Saturday, January 22, 2011 at 12:07AM
My name is Christine. I am a 38 year old mother of three young children. Tom is 10, Connor is 8, and Morgan is 6. Kevin, my husband, has been my partner since I was 15, and we have been married since September 20, 1997 (over 13 years). I find myself in a time of intense personal reflection, where I am very focused on increasing my self-awareness. As of this week, I am filled with positive energy that I can only describe as overwhelming at this moment. I am having trouble sleeping because I am so full of excitement regarding the possibilities for our future. I did not feel this way last week. Last week, and for years now, I have been filled with anxiety. I have been searching for a very long time now, trying to understand where this anxiety was coming from. I believe I now have a new appreciation for the events of my life. This new appreciation is bringing me a feeling of peace and love toward everyone I encounter.
My family has been working through social issues for several years now. We have been through a huge series of discussions, with many professionals both inside and outside Nova Scotia's public education system, and our journey will continue. I believe we’ve come to an important point in our journey. At the beginning of this week, I shared a similar message to this one, with my closest family members, my children's schools, my managers, and my colleagues in the "Authentic Leadership" group in CSC. Based on feedback from that sharing, I now feel called to share my story more widely.
In the past couple of weeks, I have been reading a book called "Wikinomics: How Mass Collaboration Changes Everything", by Don Tapscott and Anthony D. Williams. In response to my sharing in this past week, one of my children's teachers, as well as my sister, expressed that I should write a book, and a colleague in the "Authentic Leadership" group suggested I should consider creating this personal blog. My manager suggested I trial SquareSpace. As I find myself reading this book called "Wikinomics", I find myself inspired by the possibilities of online collaboration with my family, friends, and the world at large.
Some of the professionals consulted along our journey felt that one of my children exhibits traits of Autistic Spectrum Disorders (ASDs). Since that was suggested, though not formally diagnosed at this time, I’ve read countless books on this topic. Since Christmas, I've read two autobiographies. The first was called "Asperger's from the Inside Out: A Supportive and Practical Guide for Anyone with Asperger's Syndrome", by Michael John Carley (http://www.amazon.com/Aspergers-Inside-Out-Supportive-Practical/dp/0399533974). I spent my time between Christmas and New Year's Eve fixated on this book. Then, this past weekend, another book really took my interest. I don’t normally read an entire novel in about a day. I've read a book called "Look Me in the Eyes: My Life with Asperger's", by John Elder Robison (http://www.amazon.com/Look-Me-Eye-Life-Aspergers/dp/0307395987). This book was written by a guy that was diagnosed with Asperger’s Syndrome in his 40s… The guy actually did some really interesting things, like modify guitars with special effects for KISS and build the electronics for the first voice-activated toys.
It’s really quite an experience for me, reading these books. As often described in the autobiographies I’ve read, it’s at times sending me on an emotional rollercoaster, as I re-think many events that have transpired over my life, but I’m adapting. I’m sure other people have seen me immediately as different, but I really didn’t fully see it until reading these books. While I’m not a trained professional regarding Asperger’s Syndrome, or other Autistic Spectrum Disorders, I feel that this is what's been happening in my family members, all to varying degrees. As we continue to consult professionals, I believe we’ll learn more. As I read each book, I can relate in many ways, but in some ways I do not. I don’t view myself as a “savant” type, as some seem to be. I’m not a mathematical wizard. I don’t long to build circuit boards or anything like that. I actually have an intense interest in psychology, learning about people’s strengths and the like. I have had my career success by learning about computers, and I am a very intense worker when I get interested in something. It’s a spectrum, so when/if you choose to read books about ASDs, I caution you to remember that not all traits apply to all people. I believe it’s not a disease, but a way of being, and people with ASDs are still their own unique individuals, with some very significant strengths.
Understand that I’m writing these things because I figure that if I didn’t know these things then there is a pretty good chance others don’t either. Until recently, I had no clue people could “be” in this way. In these books, I've seen it estimated that at least 1 of every 150 people has Asperger's Syndrome. There are MANY adults that simply have no idea. Also, most teachers or even psychologists have little or no experience with ASDs at this time.
I’m going to spell out my thoughts regarding a few things I’ve been learning. Herein, I am describing what I've been reading about Asperger's Syndrome, and I will use "AS" for short for this from here.
1) People with AS generally do not easily look people in the eyes when they speak (thus the title of the book I’ve just read). It can be frustrating if you want to speak, but are not comfortable looking at people and so people are not responding to you. I’ve only recently learned that most people, at least in North America, expect eye contact, something I didn’t really think about before reading all these books. When that doesn’t happen, a “neurotypical” person will often think that the other person is somehow hiding something. That’s not the case. The person with AS is simply more comfortable speaking without looking you in the eye. I’ve even caught people getting frustrated at times, when trying to speak to Connor and he wouldn’t look at them. It’s a social skill that needs to be learned. If you’re not born that way, I can personally say it’s a tough skill to learn.
2) People with AS often miss things like social cues. These are the things that tell you when someone is either interested or not in what you are saying, or tell you if you’re in their personal space or otherwise making them uncomfortable. I’m sure teachers have seen that with Connor – he’ll talk at length about something you haven’t even mentioned as a subject, while you’re trying to get him to focus on what you have to say. A tip here is to try to link in what he’s trying to focus on, link to what you want to cover. That’s often not going to be easy to do, but when you can do it, I’m sure you will have better results.
3) People with AS may exhibit unusual facial expressions. For example, they may smile at something when you think it’s not really the right time, or cry out of the blue when you’re thinking what on earth is he/she thinking! It might mean something as simple as a feeling of joy because whatever awful situation being described didn’t directly impact those he/she loves, or maybe you triggered some thought about something that actually upsets the person. We should not mistake lack of display of emotion as a lack of ability to experience emotions. People with AS can be intensely emotional.
4) People with AS tend to be terrible at small talk. Witness me at any meeting or party. While everyone else is talking about the latest thing in the news, I have tended to be very focused on whatever the work is that I have in mind as important at the time. I’m generally not good at paying attention to things that are not directly impacting my friends and family. This is something I’ve actually gotten better at in recent years. I was fortunate to have a manager point that out to me years ago, so I’ve made efforts since to speak more in meetings/watch the news. It’s very slowly getting easier for me, but I’m not “neurotypical” in that way. Learning to answer questions like “how are you?” appropriately is a social skill that needs to be learned by a person with AS.
5) People with AS do not easily connect with people their own age. Connor is much more comfortable with teachers than kids. My closest friends are generally people in a different generation than me. My extracurricular activities tend to involve doing things with people in other generations as well. I currently view one of my children’s teachers as my best friend. She has been an amazing confidant for me. When my friends haven’t been older than me, they’ve generally been what John Elder Robison refers to as the “misfits” – many of my friends have had issues with abuse, suicide, and the like, or just did not easily fit in with the larger school population. I’ve also gravitated to places where I could lead kids – I’ve been very involved with guides and scouting in the past. I loved the way the kids looked up to me instead of leaving me feeling like a weirdo. When a kid with AS speaks to a neurotypical kid, the other kid tends to respond with recognition that the AS kid is odd; an adult will often instead adapt, thinking the kid just needs to be re-directed. It’s easier for a kid with AS to talk to an adult. People with AS need to learn to talk to people their own age. In grade 4 and grade 6, I actually visited my teachers homes on a regular basis – how weird is that?! ;-) Beyond that, I tended to have one person I called a friend at a time during elementary school, and that one person didn’t always see me the same way. Another key social skill that’s not easy for a person with AS to learn – socialize with people his/her own age.
6) People with AS like structure. People often remark that one of my key strengths is in "arranging" or "organizing". I've been very active in organizing fundraising events. I can also say that I get very cranky when my house gets messy. My family would tell you to get out of my way when I realize the mess has hit – you need to give me space to clean up, or risk getting yelled at for being a slob. I’m working on that negative behaviour/my house is no longer the neat place it used to be all the time ;-)
7) People with AS can become intensely focused on their interests. Witness my focus on learning about ASDs right now ;-) Connor is focused on farming, how to start a business and, above all us, his computers games. He’s also very much enjoying the snow these days. I find it very hard to get him to talk about much else.
I’m sure I could go on and on even more, but I’ll stop the list here, at least for now.
I’ve been fortunate along the way in that I generally haven’t been ridiculed, despite my odd behaviours. I have generally been treated kindly. My parents are very logical as well – they instilled in me that I can learn to do anything I want to. Read a book, surf the web – it’s all there! (Not exactly true, but it’s served me well.) Not all are so lucky. I’ve encountered many such kind teachers, and I cannot thank them enough for that!
I wish to point out something that I think is very important. It’s an excerpt from "Look Me in the Eye":
“Many descriptions of autism and Asperger’s describe people like me as “not wanting contact with others” or “preferring to play alone.” I can’t speak for other kids, but I’d like to be very clear about my own feelings. I did not ever WANT to be alone. And all those child psychologists who said “John prefers to play by himself” were dead wrong. I played by myself because I was a failure at playing with others. I was alone as a result of my own limitations, and being alone was one of the bitterest disappointments of my young life. The sting of those early failures followed me long into adulthood, even after I learned about Asperger’s.”
The biggest thing I think anyone can give to a child with an ASD is patience and acceptance. If you can somehow help him or her to learn those key social skills, to look people in the eye (at least in cultures where that is considered appropriate), to respond appropriately in small talk/engage with other people in what they want to talk about, to be with kids his/her own age, etc., preferably without making him/her feel more like a misfit in the process, I believe that would represent educational success. I have no doubt that these children can do the academic stuff – reading, writing, math… it’s really the social skills they need help with. If they are helped there, I believe the rest will very easily follow, and then look out world! If they are not helped there, they are at significant risk of dropping out of school and giving up.
In addition to this, I am President for the Home and School Association in my children's elementary school. Here in Nova Scotia, the school boards were directed to do a planning exercise, to illustrate what a 22% cut to the education budget would look like. In my role with H&S and as a parent, I have spent significant time understanding - attended a meeting last night where the local board presented to parents. Good news is now cuts will not be 22%. Bad news is there will still be cuts and, though they have not said how much yet, it's my view that ANY cut right now would be devastating for Nova Scotia. There is a program here called "Learning for Life" that is as at risk of being cut. Many of our doctors have already left to go where they feel health and education is better, and more expressed last night that they are considering doing this. Cutting programs like this will lead our children to higher drop-out rates, thereby increasing the declining enrollment… I could go on. Again, I feel need to write, to express to government. I feel a very strong desire to work in an area where I can help improve the public education system in Nova Scotia.
To make things even crazier, I’m involved with Virtues Connection Nova Scotia, where we’re planning a mentorship in Halifax in early June (www.vcns.info). I am considering doing a presentation there, regarding how the Virtues Project has helped me on my journey. I am also considering becoming a Virtues Facilitator, expanding my skill set to help others identify their strengths, an area I’m very passionate about.
I've been deliberating about this ALL week. I've managed to get my higher priority work done in CSC, but at a significant price. I'm extremely exhausted. I’ve barely slept. I never thought I needed "professional help", but clearly I do. Many of my friends have told me in the past few weeks that clearly I do... all in a very caring manner. I need to learn more about this condition, so that I can help my children. I'm going to see a psychologist on Monday, Feb 7th. She specializes in helping people with Autistic Spectrum Disorders. Originally, that request was just to help Connor, but now I think it's really about much more.
I have picked up a few interesting articles on the internet this week as well.
As I am using a trial copy of SquareSpace at this time, I am going to begin by sharing this with my closest family and friends. If I feel that this is a positive experience, I will consider asking others to join this collaborative conversation that I think I would like to have with the larger world. I feel that education on this topic is key to addressing the issues in our public school systems today.
My question to you is, based on what you've just read, do you agree that I may have Asperger's Syndrome, or some other Autistic Spectrum Disorder? Also, since this is apparently a genetic condition, can any of you relate?
Thank you for all that you do!
Reader Comments (7)
I found this blog quite interesting! It tells me much more of aspergers sydrome then what I already know!
January 22, 2011 | Tom
Hi Christine!
Great Blog thanks for sending it to me!! I've read it all and wanted to thank you for the Interesting Read!! Hope you find out the Answers for yourself & your Son!!
Christine- I'm so glad you shared your blog with me. There is still so much to learn & be learned about ASDs. I'm with you that it's NOT a disease, rather a condition that so many aorund us live with. The spectrum that is covered is so broad and encompassing that mis-diagnosis is prevalent. Your sharing here will make connections to many people and I am sure is therapeutic for you as well as for your readers. We all have so much to learn & so many improvements we can make in interactions and education related to ASD. Thanks for sharing! ~Heather
Yes, this is very therapeutic for me. It's giving me clarity about what I am passionate about. I feel great!
Christine, this is an incredibly interesting and well written piece. Thanks so much for sharing with me. It makes me very happy to hear about your personal journey of self-discovery - very inspirational.
Don't know what is wrong what is rite but i know that every one has there own point of view and same goes to this one muldtr muldtr - Discount Belstaff Jacket.
Thanks Christine!! Very informative. Your blog has helped me to understand people with AS.
Saturday, January 22, 2011 at 4:40AM
I understand that people "on the spectrum" may experience times of over-stimulation. This is certainly something that I can relate to. One of my friends mentioned that her ADHD nephew doesn't sleep well at night, unless all the lights are out and there is total darkness. Normally, I am not that way. However, when I get an idea in my head that I feel a need to write about, such as when I'm working on a document for work, I go into a state where sleep alludes me. This is happening to me right now! Therefore, I am going to post a series of blog entries that have been rolling around in my mind here all night.
Saturday, January 22, 2011 at 4:44AM
Children on the spectrum are often described as lacking the capacity for imaginary play. They are logical thinkers. According to the "Bright Hub" article I mentioned in my first blog entry, Aspie "girls with the disorder often display obsessive tendencies in regard to animals, dolls, and other female-oriented interests." I remember that when I was young my Dad made me and my sister a beautiful doll house. He's since made another one for Morgan. I used to play with that with my sister, so I guess I always thought that imaginary play was not something I was incapable of. I consider this now though... If it was suggested that my doll should sleep in a sandbox, that I should pretend that was the doll's bed, I would not accept that. In my mind, that was not logical, and so that was not how to play with a doll. I have read that boys on the spectrum will play with a car in a way different from neurotypical boys - they will watch the wheels on the car move, to see how they work, and will not be interested in making up stories about driving the car around imaginary places. As an adult, I observe that I do not enjoy imaginary thinking at all. Connor is also this way. Tom and Kevin both love role-playing games and making up stories, and they leave me with the impression that they have immensely creative imaginations. I wonder as I sit here now, how would Morgan respond if I suggested that her doll should sleep in a sandbox?
Reader Comments (4)
Did I tell you the doll should sleep in a sandbox?LOL I have no recollection of that all. I do however remember Dad and our Uncle building the dollhouse in the garage. It was an amazing dollhouse! Also the lifelike kitchen that was built in the corner of my bedroom! You sure have a way with words, I wish I had this ability. I'm usually tongue tied.
January 23, 2011 | Lynn
I keep hearing that.. I have a "way with words". What does that mean exactly? Am I making everyone think I'm a lunatic? Am I stirring emotions - good or bad? I'd love to know, as I consider taking the advice that seems to come from many - advice to write a book... I remember the kitchen as well. More fond memories!
I completely made up that story about the sandbox. I was just proposing a situation when maybe someone might show play without imagination. I'm wondering if a kid can play with a doll a lot, yet still have no "imaginary play" skills.
Hi Christine,
I have been reading your blog and cannot stop. This is coming from a person that tells everyone that I hate to read. They all respond, “You are a teacher and you hate to read”. It is not that I really hate to read it is that I cannot picture what I am reading. I always told them, “It is that I do not have an active imagination”. I am a person who needs to watch the movie before I read the book. I cannot picture what is happening unless I see it first. When I read it is for the information it is not to take me to some far of place as I cannot get to that place if I have to imagine it. I am looking forward to reading more not only as your friend but as an educator.
January 24, 2011 | Dawn
No rush, Dawn! I just fell asleep on the couch for the last hour. Missed "House", which I love to watch, so you KNOW I'm tired. I'm going to bed :-)
Saturday, January 22, 2011 at 4:54AM
It seems I've also read that children on the spectrum learn by memorization. They also tend to develop strong musical interests. When I was maybe about 10, I started to spend a lot of time on my own in my bedroom. I would listen to songs playing on my little record player, over and over, with objective that I would memorize them. I would then go out into the house and seek someone to sing the song to. My Oma and Opa were often the recipients of that. Those are fond memories for me. I also went through a stage where I was part of the church choir, and I really enjoyed when I was given opportunity to sing solo in front of everyone. As an adult, I no longer like to sing in front of people. I recognize that my vocal skills are terribly untrained! However, I do find myself still memorizing lyrics. I look for songs that bring me a sense of comfort in the chaos. Here are some examples:
I Have a Dream, by Abba
I also really love songs that make me feel closer to the communities I am associated with:
- Proud Pictonians, by Dave Gunning (couldn't find this in YouTube, sorry!)
- Out on the Mira - an old song from Cape Breton, about Marion's Bridge
- Orangedale Whistle, by the Rankin Family
Does everyone memorize music like this, or is this one of my quirks?
I remember that I had one friend that I would play with from Grades 2-5. When we moved and I had to change schools, I made another friend that I would stay close with from Grade 6-8. Both of these friends seemed to me to be much like me. They didn't have a lot of friends at the time, and we seemed to be happy together. I recall now that they both attended piano lessons. In fact, they are both now very accomplished in that area. This is something that I longed to do as a child, but my parents really didn't have the time to do with me. This is fully understandable, but at the time I suppose left me feeling a bit disconnected from those two friends. Now that I have children of my own, they are attending piano lessons. It amazes me every day, how fast they seem to learn to play. As I am now working with the 3rd child in 1st year, I'm also beginning to learn, as I watch them. Our whole family seems to like to play with the keyboard. I've found that Connor and Kevin prefer to play by ear though, so Connor is no longer in structured lessons at this time, and they are both pretty good at that. Tom, Morgan, and I are learning to play piano together.
Update on Tuesday, January 25, 2011 at 3:28PM by Christine
I've added links to videos on YouTube, where I could.
Reader Comments (9)
Yes I used to also try to memorize music when I was 11 - 14 years old. I truly believed one day I would be a singer. I even tried to get my brother to teach me the guitar
January 22, 2011 | Mom
Mom, I still have the book with all of your lyrics, with many more added.
@Mom - Are you saying that you no longer have lyrics rolling around in your head all the time? I hope that's not the case. I think that is a positive part of who I am. Currently, I have lyrics playing in my mind as follows: "We're everyone's sons and daughters, Living our lives in a rage, Everyone's sons and daughters, Living in a desperate age." Also, "I want to turn this world upside down. I'll find the things they say just can't be found. I want to share this love with everyone. I don't want this feeling to go away!" Seems appropriate.
I popped an old CD into our car stereo this weekend. Here are some words from a song that Morgan wants me to play now, over and over! "When you feel all hope is gone, Look inside you and be strong, And you'll finally see the truth, That a hero lies in YOU!" Happy Monday, everyone :-)
I should have added, that's from Mariah Carey!
Yes I still find music very soothing - but I don't sit and write the words down anymore. Try some of Dan Gibson's music when you meditate.
January 24, 2011 | Mom
I don't write them anymore either. The internet is full of lyrics, already typed and ready to read :-)
As a student I always had to memorize for a test. If it wasn’t for you I would have never made it through Physics (unless Mother would make the whole test math questions). I love listening to music and when I was younger I did take piano lesson and sang in the church and school choirs. Just like you I will no longer sing in front of a crowd anymore unless it is with my students. The songs I like to listen to are ones that I can easily recognize the lyrics and sing to which tend to be your softer songs. I don’t think anyone would ever want to borrow my mp3 player.
January 24, 2011 | Dawn
I think I would, Dawn. Let's check that out sometime.
Saturday, January 22, 2011 at 5:09AM
John Elder Robison commented in his book that he has always found it hard to understand why people drink or take drugs. This one is a tough one for me. Kevin and I have always been this way. We have no interest in drinking and have never taken any sort of illegal drugs. Especially difficult for us is that we shared a best friend, Cecil. On May 7, 1994, Cecil was taken away from us by a drunk driver. We all shared an apartment together during that year, along with Cecil's fiance, and we received a call from the police, telling us that our best friend would never be home again. I will never drink, and I always ask that my friends and family think long and hard before they ever drink and drive.
Reader Comments (2)
I think you should go with your original job plan - Psychologist - you would be the greatest. You are more attuned to people than you are aware of. You have always had this gift.
Thank you for the feedback. I am a bit unsure still whether it's a Psychologist path I want to take, or perhaps just to continue to promote awareness of ASDs in other ways. Going back to school would be pretty tough right now, with three kids and all that, but maybe. I'm not going to rush this decision :-)
Saturday, January 22, 2011 at 5:12AM
The Bright Hub article about Aspie girls said that "their fascination with certain subjects can lead to them lagging behind their peers in terms of maturity and age-appropriate behavior". Interesting. When I was in Junior High, somewhere between when I had the other two girls I mentioned as friends, I developed a close friendship with a neighbour boy. He would come over to my house nearly every day, and we would shoot hoops in the yard. My memory of those times is very fond - I even put a basketball court in my own yard here so that I can do that still. As he matured, he developed a more than friend interest in me. My logical mind said that this made sense, so I agreed that I would be his girlfriend. Then an event happened that changed everything. This seems perhaps a wee bit funny to me now, because I'm older and have matured. However, what happened is simple - he tried to kiss me. This made me completely uncomfortable. I think I was about 14 at the time. I promptly told him that I could not be his girlfriend, we could only be friends. "It's not you. It's Me", I said. This pretty much ended our friendship. He stopped coming over, and he also pretty much stopped talking to me. I bumped into his once in a local grocery store last year. I'm so happy to hear that he moved on to good things :-) I later dated a boy named Jason for a while, then the same response. He died on January 17, 2007, from bone cancer, so I will never be able to articulate this to him, now that I understand. I also dated Cecil, the guy I mentioned in a previous post that was killed. I was his girlfriend for two short periods of time, with the same response. I was so relieved that he decided to remain my friend in later years! With Kevin, I broke up with him twice... third time was the charm :-) This is an example of an "emotional rollercoaster" event for me. The realization that perhaps the reason I responded as I did was because I did not mature as quickly as it seems other girls do. Good news is that eventually I did grow up!
Reader Comments
There are no comments for this journal entry. To create a new comment, use the form below.
Saturday, January 22, 2011 at 5:26AM
In my earlier years, as I alluded to earlier with mention of church choir, I was very engaged in the Catholic faith. I loved to participate in the church. I even wanted to be an altar server at one point. In my later years, I learned of an event that strongly changed my interest there. Someone I know was not treated well by a priest. I am not going to give more detail than that. It is not my story to share. Kevin has also had some negative experiences with chruch. At this point in my life, participation in a church is not for me. It has hurt those we love, and so we do not want to take our children there.
Having said that, I remember that church gave me an immense feeling of community and belonging, and the stories told by the church offer many positive moral lessons. Sometimes I think it might be nice to participate with the small church here in our village, but Kevin is not comfortable with that. So, I choose to get that experience elsewhere.
A few years ago, I chose to read a book called "A New Earth", by Erkhart Tolle. This book introduced me to a new way of thinking about God, a way that I can very much feel comfortable with. It speaks about energy surrounding all of us. We are all connected. When someone passes, their energy remains, just outside the physical body. When one person hurts, those close to them also hurt. When someone smiles, we respond with a smile. I wonder if Aspies in general think this way.
(I originally put a title of "Religion" on this. For some reason, the "Comment" button is disabled. I'm trying a rename of title, to see if that changes things... That didn't work. I wonder why that button is disabled...)
Update on Monday, January 24, 2011 at 12:23PM by Christine
I've revised this post. I didn't like the way I worded things. I hope it sounds a little bit less negative now... Still can't figure out why the "Comment" button is disabled.
Saturday, January 22, 2011 at 5:38AM
Many times up until now, I've been with people and then suddenly I'd start crying. I'd respond "I don't know why I'm crying!" I knew it was not logical, at least from what those near me had observed, but I really could not explain what was wrong with me. What I couldn't express then, that I clearly feel now, is that I was feeling anxiety from my disconnection with people. That has been changing dramatically for me lately. I feel extremely connected to many in my family and friends circle at this time. I'm also developing new friendships, born from telling my story more publically. Just in this past week, I've made a new friend in Denmark, with two children with autism, and another friend in Australia, with four children on the spectrum. I have reconnected with another friend, now in his 70s, recently diagnosed with Asperger's Syndrome. I hope that this continues. I feel very strongly that education about Autistic Spectrum Disorders could lead to a revolution of change, where people like me will not have to wait so long to discover what's been eating at them, and will be able to develop the social skills they need much earlier. As I said in my first post, I feel very fortunate that I have met the people I have on my journey. Imagine how I would have turned out if no one had taken the time to put up with my quirks. I thank all of my family and friends for their support here!
Reader Comments (1)
Hi Christine;
Great Blog. I admire you for being able to open up so much in your blog. You can express yourself quite well. I really enjoy your comments on Asbergers and I am very interested in knowing more about it. Keep it up. Maybe I will comment on some of your other blogs. I am not comfortable "talking" so publicly just yet.
Saturday, January 22, 2011 at 5:46AM
I am a project leader responsible for Desktop Systems Management engineering projects within CSC. I work from a home office in Nova Scotia. My colleagues are distributed globally. I have colleagues in Ottawa, the U.S., the U.K., India, Australia, Denmark, and get the opportunity to meet people in new places every day! My work is done now strictly with internet-based technologies. That is to say, I never actually get to see my colleagues face-to-face. I have an IP based phone, with a number based in Ottawa, though I work in Nova Scotia. My manager recently pointed out to me that this gives me a unique social skill that many people do not have. When I speak on the phone to someone, I am perhaps more skilled at recognizing emotions from inflection of a person's voice. I also get opportunity all the time to learn about different cultures. This is truly a wonderful experience. I am excited about the possibilities that techologies of mass collaboration offer. This is my first experience blogging. I wonder if people enjoy this approach.
Reader Comments (2)
Hey there Christine. Blogging is great. My mother was blind and therefore everyone's voice and separate characteristics were more profound - just as you are more astute dealing with your colleagues on the phone. You will pick up more about a person by not seeing them face-to-face. Keep up the good work. LOL Aunt Bernice
Hi Aunt Bernice! Thanks for sharing that about your mother. I think it is interesting how we are so different in person compared to when we are not. I certainly "say" a lot more to people in email, in this blog and such, than I do when I see them face-to-face. It's something I hope to get better at, a social skill that I'd like to improve :-)
Saturday, January 22, 2011 at 6:01AM
As I mentioned in my first post, I am going to be consulting a psychologist. She specializes in helping people with Autistic Spectrum Disorders to develop social skills. I especially need to do this for Connor, as he is struggling in school at this time and I do not know how to help him. I believe I will continue to learn a lot from this experience.
Saturday, January 22, 2011 at 6:09AM
If you are just joining to read this blog, please read this post, and then navigate all the way to the first post I made, and read them in time order. Each blog entry has a time stamp.
I am hopeful that people will collaborate with me by sharing some of their stories, by responding to what I've posted here today, telling me if they saw me differently perhaps as I was growing up. Note that you can participate in a completely anonymous fashion. I have intentionally not included my last name, nor the names of my children's schools or the name of the village I live in. I'm not comfortable being fully "out" with this information, at least yet.
Having said that, I would find it interesting to know approximately where in the world people are as/if they respond. Perhaps you could start each message by stating a name and something to indicate where you are... I'd begin a post with "This is Christine in Nova Scotia." As I said, you can make up your name. If you are someone close to me, and you make up your name, please consider telling me who you are via email or some other method, so that I can make that connection.
Through all of my experiences, I have found ways to cope and develop social skills for myself. I have done this by learning relaxation techniques, such Tai Chi and Qi Gong. I am an active volunteer in my children's schools. I am involved with my local Women's Institute group. I participate as a board member with Virtues Connection Nova Scotia. I have volunteered with the local United Way. And more!
People often remark that I do so much. How do I do it all, they say? I now recognize that I have a passionate desire to be involved with improving the public education system's approach, to find ways to help our children develop social skills early, to want to stay in school and become active members in society. I enjoy identifying new approaches to education. As I find them, perhaps I will share them here. If you have ideas in this regard, please consider sharing.
Now that I've told some of my story, perhaps I can get some sleep :-)
Reader Comments (4)
Thank you Christine for sharing this. It is very enlightening to everyone who reads it. I agree that you should consider doing a book. You still have some research to do, but it could be part of the book. There are people who need to see someone walking through the process(action research) in order to be able to understand. Having suffered from depression and feeling like your standing on the outside looking in, and "faking it" for the rest of the world....I can relate.:)
Hi Christine, and congratulations on beginning this project. It is a big undertaking and very typical of you in that you are so caring of others and hope to help others through the sharing of your experiences. I have always felt connected to you and appreciated who you are.
@Cindy - I had no idea. Thank you for sharing. I feel a new connection with you now. Thank you for that. You are a very compassionate person.
@Larissa - Our connection began as you taught me how to breastfeed my children - I appreciate all the time and attention you've paid to my expressions of concern over time! Are you diagnosed with Asperger’s? What about the rest of your family? Can you relate to the differences between boys and girls, as I’ve been reading about? If you're comfortable sharing online, please consider doing that. I think many can learn from your story! I've missed you, friend. I'm so pleased that you are re-connecting with me now!
I am hoping more will choose to share their stories online here. So much is happening offline – so many conversations. My inbox is definitely no longer at zero, something I generally strive for :-) It’s really something, the response I'm getting. I feel like I’ve tapped into energy that I have been searching for, sort of a calling I've felt for a very long time.
So many questions being answered for me, and so many more being raised! I intend to add more posts over time. I'm trying to hold myself back a bit, to let my family and friends catch up, then I will maybe aim to do a post per day for a while.
Thank you, everyone!
I haven't been diagnosed with Asperger's syndrome and, knowing what I do about Asperger's, I am sure that I am not "on the spectrum". Mason has been diagnosed, however, shortly before Connor, and you may recall how he had difficulty playing with other children at La Leche League meetings when he and Tommy were about 2 years old. My husband is pretty sure that he has undiagnosed Asperger's (and I would agree with him there :-) and both he and Mason have sensory processing disorder. I always figured that Carli's "anxiety disorder" is actually Asperger's too, but she is more socially aware and capable than Mason so I would consider it mild. All these issues cause me anxiety and I've suffered from that but have been working on getting myself healthier again. That's a whole other story....
It's been a very interesting journey, sometimes heartwrenching and always stressful (but not always bad stress, sometimes excitement, sometimes worry, sometimes anger) with many experiments and many changes. I've got to say that parenting children with Asperger's is not easy if you're stuck on the conventional "good parenting" that people expect. In that way, my connection with LLLC has helped me a lot as I have learned to respond to the needs of my children, not the conventions that society expects. Some needs were long to be outgrown, raising some eyebrows, or my responses sometimes were not what people would expect, but I tried to ignore that follow my heart and intuition were telling me to do.
Loving someone with Asperger's is really a good lesson in true love. You love them for all that they are, their wonderful qualities, their quirks, their sense of humour, and you accept their not so wonderful qualities because it is part of who they are. They love they give you in return is whole and unconditional and a truly wonderful thing.
Saturday, January 22, 2011 at 10:04PM
Okay, I said I was going to hold back posting for a bit, but I feel need to share this anyway... It's a podcast about Temple Grandin. Click here to view it.
Click here for another video about Temple Grandin.
Sunday, January 23, 2011 at 4:02AM
Before last night, I had slept a total of about 5 hours, all week! I've just now woken from a 4 hour sleep. I feel I must share the rest of the story of the most significantly impacting time of my life...
I already mentioned that on May 7, 1994, I lost my best friend, Cecil. At that time, in separate incidents, I also lost two other friends.
On April 25, 1994, a girl that had lived next to me in dorm, during my second year of university, was in a car accident. Her name was Tara Lynne Tousenard. As I already mentioned, I did not connect well with peers my own age along my journey. My university roommates actually barely knew me. Tara lived next to me and I watched and admired her from afar. I didn't get to know her all that well, but I cherish a cassette that she gave to me as a gift. She was a fiddler. Perhaps some of you reading this actually knew her? Click here to see one of her videos. I reflect now that in August of 1993 someone else was born. This girl is now an amazing young woman in our community. I wonder if she is reading this. I wonder how Tara's story will touch her life now. Perhaps she would like to respond to this post?
As if this was not enough, during that same time period (I've lost sight of the date), I recall that another of my friends passed. Cecil, Jason and I would swim regularly with him and his faterh. My father would take us all swimming, at times every evening in a week. Again, very fond memories for me. Some of you will realize that I joined the Master's Swim team here, and that this year I stopped going. I stopped because my time was feeling too full. I needed space. I also stopped going because it was stirring many memories for me. This friend struggled all through when I was in high school, and shared many touching lunch time talks with me that I'm sorry I do not recall details of anymore. He had many hopes and dreams that touched my soul. This boy's name was Billy. He died from a brain tumour, after a battle with cancer. I didn't get to his funeral, I think because I was reeling from all the other events of the time. I wonder if someone out there could share this blog with his father, who also swam with us, and let him know that I remember Billy. Perhaps it's time for us to re-connect?
I remember that in high school I ended up taking a Sociology course. That course taught me about topics like child abuse and incest. I was so fascinated in that class, because I actually knew people who experienced those situations. I expressed to some at that time that I thought I'd like to be a Child Psychologist. They reflected to me that if I did that then I would have to hear stories such as these every day, all day. Would I really be able to do that? They cautioned me that I should think long and hard before making a decision to go that route, and I thank them for that perspective. I really would not have been ready. I had also developed a love for computers by that time, so I chose instead to go in that direction. I'm thinking now that perhaps I had to do that, to get this perspective that I have now shared with all of you. I wonder now, should I perhaps go back to school? Is that really what I was born to do? Maybe I was born to become a Child Psychologist, to share my stories as I'm doing here, and to help children who are struggling with mental illness and neurological conditions in school here. What do people think? Am I onto something?
Update on Wednesday, February 9, 2011 at 8:16AM by Christine
I re-connected with Billy's father this week, and also Jason's wife, an old friend from high school that I had lost touch with, and my university dorm roommates. It's wonderful - so many positive events have happened in the last 20 years for the people I have known. Billy's parents have both become nurses, and become parents again. At the same time, I'm taken aback by the recognition that Billy didn't die in 1994... It was February 25, 1991! At any rate, it's been hard for me to let go of the more tragic events of my past, and I've read that this is often the case for girls with AS... so I guess that's one more detail that seems to indicate I may have Asperger's Syndrome. I no longer think I'll go after a formal diagnosis for myself, at least in near future - doing this for my son will be very expensive and I don't think knowing that detail about me is critical right now. Good news is that all this "talking" (all in email) with people from my past is really helping me move forward. I've even stopped biting my nails :-)
Reader Comments (1)
I can tell by your writing that you feel deeply about anyone and anything that comes into your life. You are number one a family person. You can relate to anything that comes up and you deal with it. Candida - I had the same problem quite a few years ago - ovrflow of yeast. By changing MY diet a little I was able to conquer this. I feel great. Keep up the good work. LOL
Sunday, January 23, 2011 at 7:06AM
Along my journey, there have been many suggestions to me that I and my children need to change our diets. It's been suggested that a Gluten Free / Casein Free diet would clear up a lot of our issues. I attempted to do this for a short time a few years ago. I tried to eliminate both gluten and casein from our diets. This proved far too challenging for me. I had so many other things to consider, I just couldn't focus on total diet transformations as well. My children did not want to cooperate either. They are generally very picky eaters.
For a long time, I experienced mood swings and bowel issues. These are symptoms that are often mentioned related to autism. I've found that drinking lots of water eliminates my bowel issues - those are generally gone now. A month or so ago, these issues with mood swings became so intense that I decided to consult a local naturopathic doctor. I cried all over her, I was so messed up.
She listened supportively to me. She heard my full medical history, my very large family's history (Mom is youngest of 13, Dad is youngest of 8, and I have MANY cousins), and about many of the experiences I mention in this personal blog. She reviewed my latest bloodwork reports from my traditional doctor as well. My traditional doctor had indicated there was no indication of any physical issues with me, but suggested I seek professional help from a psychologist. Of course, he was right, but there is more to it.
Dr. Gabrielle Kropp's response was this.
Because I had a lot of ear infections as a child, and therefore had taken a lot antibiotics, my system is now full of yeast. She explained to me that, with my body in such a hypersensitive state, ANY eating of food to increase insulin levels, such as eating white bread and sweets, would cause me to become very emotional. She further said that she thought I might also have bacteria attacking my brain stem. This is an alarming statement, but it certainly led me to think! After consulting my bloodwork, she also said I seem to have issues with vitamin and mineral deficiencies.
She recommended I begin getting B12 shots immediately, and I have done that and it does seem to be helping. She also prescribed Vitamin C, Magnesium, and a few others with odd names I'd never heard of. I am following her advice here. She provided me with information to transform my diet as well. This is where I am currently stalled. I need to muster up the energy to do this. The diet is very similar to the candida diet, or the GFCF diet, that I have already become familiar with.
While I don't think diet change is likely to be a total "cure" for my family's condition, I do think I need to work on that. I reflect that MANY in my family of relatives have conditions like diabetes, heart conditions, MS, and cancers. I now wonder if it's all a result of a neurological condition that we all share.
Reader Comments (2)
We travel similar paths, Christine, provinces apart. Not surprising that we became friends....
I have been seeing a naturopathic MD since July 2010, after my family doctor said that my hormones and digestive system were so messed up he didn't know what to do with me. I was walking at Costco through the book aisle (something I never do so I believe it was divine providence that led me there that day :-) and found a book called "The Hormone Diet". I read it cover to cover in a couple of days and showed it to my doctor. He agreed that all my symptoms were in the book - as if it had been written about me - and that I NEEDED to see that doctor. For any of you that are interested, www.clearmedicine.com will lead you to more information and Dr. Natasha Turner's book. I'd need my own blog to detail all that I have experienced leading to and since my first appointment with Dr. Amy Tung at Clear Medicine in July, but the book will give a lot of insight into how having hormones in balance, a healthy digestive system and managing stress leads to wellness, both physical and emotional.
Yes, Larissa. I've read that one, too :-) Another captivating read for me was "Women's Bodies Women's Wisdom", by Christiane Northrup M.D. I've been gradually working toward doing everything she recommends on pages 745 and 746, where she details the vitamins a woman should be taking. Many (and rather expensive if you do it right)! She also covers many other interesting topics in her book.
Sunday, January 23, 2011 at 8:19PM
Often people on the spectrum are described as having "obsessive compulsive disorder" or OCD. This is when a person is fixated on something, and can't help him/herself from doing that something.
I think I exhibit OCD behaviours when I'm cleaning the house. I start out just picking up a few things, and next thing I know I'm hand washing all the downstairs floors. I can't seem to stop until I'm done, despite deadlines like trying to get to a meeting on time. I actually did that this morning. We were a bit rushed to get to 4-H today, but the house looks pretty good right now :-)
I recall that when Connor was younger he would line up his cars and he would play with his trains for hours. At one point, everything seemed to involve a circle... round train tracks, round foods like chicken nuggets and green peas. He outgrew that, and now his obsessions are more about computer games. His father is the same way - rather obsessed with computer games all the time. Our household has a XBox, XBox 360, Wii, two DSs, a DSi, a PSP, two iPod Touch devices, my work computer, my laptop, kids' computer, Kevin's computer, and a web server. We are clearly obsessed with computer technology in this house.
We also love board games. We have two long shelves that run over our washer and dryer, and they are filled overflowing with board games. When people come to visit, that's what we tend to do together. We have a similar pile of puzzles.
I have always loved card games as well. I very much enjoy my weekly bridge games. It's a complex game to learn, but I enjoy the challenge. It seems there is no end of things to learn to play bridge well. I really value my time with the bridge group, not just because of the games, but because of the social time I get with them. This particular group is a very warm and caring group of women. Despite the fact that I'm of a different generation (he he), they always make me feel welcome. I've seen them go through tough times, and always with a seemingly endless flow of positive energy. I've learned decorating techniques. I've discussed career choices. I've shared a love of baking and sewing with some of them. I feel I have learned much from them, and will continue to learn.
Now, a quirk of an obsession that I have had... When I was in about Grade 5, my mother sat me down to help me with a school project. I needed to put a title on the front page of a book about Canada's Food Guide that I was preparing. She taught me to count the letters, to find the middle letter to write in the center first, then to print left and right from there. What's quirky is that now, when I'm sitting bored in a waiting room or something like that, I'll actually find myself looking for a title on something and figuring out the center. When I catch myself doing that, it's good for a laugh ;-)
Obsessions can take many forms. Some obsessions are good, and some should really be dealt with. We will likely be consulting an Occupational Therapist for some issues.
Sunday, January 23, 2011 at 8:42PM
Connor went through a brief time when he would move his eyes, without moving his head, while watching TV. His gaze would appear to shift left, though he was still watching the TV. We were informed that this is one form of tic behaviour.
There are many very wonderful people "on the spectrum" :-)
Reader Comments (1)
I have had family members diagnosed with tourette's syndrome and OCD. I am a person you likes having everything on order and as I am getting older I find things not in order bother me more.
January 24, 2011 | Dawn
Sunday, January 23, 2011 at 8:49PM
I find myself reflecting tonight that I've had very little sleep this past week. More interesting is how much energy I seem to have. I'm not sure anyone else is really all that interested in all this writing I'm doing (good thing I'm a speed typist), but it is serving to help me sort out many thoughts I've gathered over time and put them in one place. I hope that someone else also finds all this info somehow useful.
The story of Ram Bahadur Bamjan is interesting to me. He apparently went without food or water for a VERY long time - just sat in a meditative state. Click here to view a video of his story.
I've experimented a bit with meditation, as well as things like Tai Chi and Qigong. I've purchased the Silva Life System, and I can say that techniques in there have also helped me. When I can't sleep, I use these other methods to relax and get my energy levels back. Ten years ago, to be honest, I would have said those methods were silly. Now I know better!
Reader Comments (2)
I agree - two weeks ago for the first time I visited a psychologist to learn how to deal with anxiety. The meditation techniques he taught me I can honestly say seem to be helping a lot.
In fact he mentioned some parents comment that they should be teaching this stuff in Schools.
January 24, 2011 | Mom
I totally agree. I've seen some indications of exploring this, but the funds to get someone in to do it regularly are not there right now (and at risk of getting cut further). It would be wonderful if the school system taught how to manage personal finances as well - stuff like different types of mortgages, savings vehicles, stock markets. I digress now :-)
Sunday, January 23, 2011 at 9:05PM
Another way I keep my energy levels high is through "service learning". I hadn't heard that term until a few years ago, while working with the United Way and NSCC. I had actually done lots of "volunteering" long before then, with my involvements with the Terry Fox Run, Guides and Scouting, but I didn't really view what I did as "learning" through "service" at that time. I just thought I was having fun and raising money for good causes.
One of the coolest experiences I've had with service learning was with my volunteer work for United Way. I was chair of a Haunted Hall of Horrors fundraiser for 5 years. I led the project through many stages each year. We'd design room plans, take a big transfer truck of panels and tarp to the college gym, build rooms in the gym, wire those rooms for light and sound, and then decorate each room with a scary or surprising theme and actors/actresses, put on the cool show, and then take it all apart and return it to storage via transfer truck for another year. We also had a Witches' Kitchen (canteen) and a Pumpkin Patch (supervised area for little kids). I learned a LOT from my experiences with Haunted Hall. I learned skills related to project planning and organization, presentation skills, as well as important social skills. The creative energy with the projects was amazing. I gave up my role with Haunted Hall because it was a LOT of work each Fall, during a busy time in my life, but I encourage anyone interested in learning such skills to volunteer with a group like United Way. I'm learning now that 4-H is also a great place for service learning, as are many other great places where I have and now volunteer.
So, if you're looking for a way to develop social skills as an adult, or even as a child, I recommend service learning!
Sunday, January 23, 2011 at 9:16PM
Many people on the spectrum are quite shy. They lack confidence to speak to other people. I was certainly shy in my earlier years. I've mostly overcome that now, because I've become much more self-aware.
I've done MANY exercises in raising my self-awareness over the years. I presented on this topic to my Women's Institute group in November.
- I enjoy my work more when there is harmony, when people are generally agreeing with what I am doing, and I like to be surrounded by people with opinions that lead me to positive results.
- I have strong arranger interests, in that I enjoy starting up new projects and then working alongside people who are honest and hard-working to achieve the objectives of the project. I get impatient when I need to work with people who are not also excited about what we are doing.
- I love responsibility, so I often volunteer to take on new tasks.
- I am an achiever – I thrive when I’m busy, and I like to be able to see (measure) what I’ve accomplished, to know that what I’ve done has a measurable result.
- I am an includer in that I like to make everyone feel they belong to the team, I prefer working on things that appeal to a broad market, and I enjoy working with social agencies that help to make the community a better place to live.
* I completed an IDAK career assessment, through with the JobJoy career counsellor, George Dutch:
- In communication, my strength is in writing. I can also use conversation, group moderation, and present information, but generally I prefer to write things out first.
- I relate best with repeated meetings with people - better than when left completely on my own or with brief encounters with new people all the time.
- From a function perspective, my strengths are in organizing, physical activities, helping, numeric calculations, and classifying info. I can also research, troubleshoot, and synthesize information, but that takes more effort and is somewhat less enjoyable/natural for me.
- I'm not naturally artistic, creative, persuasive, or decisive. That's not to say that I'm never artistic, creative, persuasive or decisive, just that enjoyment comes more often from activities where I'm not expected to excel in these areas.
Still, I think I have much to learn!
I wonder if all this fits the "profile" of someone with an Autistic Spectrum Disorder. I tend to think no, but I can relate to many of the Asperger's traits I've read about.
As I learn, I sort of think maybe we're all on the spectrum in some way!
I'm not sure we need to label all of this, but that's the only way to get a child help in school. Seems wrong!
Reader Comments (4)
I have help off commenting here (though I have followed it all) so far because I couldn't come up with what I thought was an appropriate response. You have certainly started some good conversations here. I think your last sentence here says it all. We have all known for a long time that there is something wrong with Connor, why is it that the system (especially medical) can't seem to recognize that also. Many of the things you have listed in your blog seem to me to be the normal things that we all have to deal with in life and death. I don't think that we need to label it but just learn how to deal with the situation we find ourselves in and then move on. When the door closes some things are better left forgotten as long as you have dealt with it in a personally satisfying way. If not find someone to talk to (family, friends or other) Hopefully this method for you will help.
I am finding it interesting also the things you all have remembered about growing up. Funny how little things have an impact on us all, doll houses, kitchens, a night out swimming etc.
I wish I had had more time while my kids were growing, and am so pleased that all of my kids are finding that time to spend with their families, I gues that is what we all wish for our families. I wonder if we ever think we have done enough?
January 24, 2011 | dad
Yeah, sometimes it takes me a while to get to the point, Dad :-)
I tend to believe that everyone is on the spectrum in some way but because everyone copes with things differently you don’t see it. Being in the education system, I wish the labels did not have to be given to give each child in the classroom what they need to succeed but to get the support you need you need to have the labels. As an educator I try everyday to make sure what I am doing in class is the best for everyone but you are always aware that someone needs more then what you alone can give to them.
January 24, 2011 | Dawn
Teachers have the most difficult job on earth!
Sunday, January 23, 2011 at 9:50PM
Many on the spectrum apparently have issues with motor skills. I'm not sure if I had issues with that at a young age. Maybe Mom or Dad can tell me that?
I do know this. If I did, I must have overcome my issues. I'm a speed typist (or I'd never write all this in a weekend). I have also enjoyed tole painting, crocheting, embroidery, knitting, latch hook, corking sewing, and even tiling a bathroom. (Probably more I'm not thinking of right now.) I made my own prom dresses a few times, and I've made Morgan a few dresses this past year. I never shy away from crafty or building activities. I do seem to need a pattern/instructions though - I don't come up with new ideas on my own really. I think my motor skills are great! I owe my Mom and Oma a great deal of credit and thanks for that.
I have started to teach Connor some of these things. Connor tole painted a cow in 4-H today. He REALLY seemed to enjoy that. He also has a barn he's made from cardboard, and he wants to make more animals to add to his farm. I think doing this may help with his motor skills and confidence over time.
Connor seems to struggle with writing his thoughts directly to paper. The school has given him a recorder, so now he speaks into that, and then takes time to replay and write his thoughts. He seems to be showing some success in writing with that approach.
For 4-H, Connor needs to write and deliver a speech next month. Yesterday, I asked him what he was going to write about (as I was falling asleep on the couch). He was so animated, talking about his My Farm game for his DS that I had to jump up and write down what he was saying. I think people will find his speech about "My Farm" rather interesting :-)
Connor also struggles in gym class. His skills with things like throwing and catching seem to lag behind other kids. He's starting to enjoy basketball.
I wonder what else we could do to help him with writing and other motor skills...
Reader Comments (1)
No painting for me today and a little quiet at work:-)
I don't recall you having any problems with your motor skills as a child. Seemed like you would do anything you put your mind to.
I too have problems putting my thoughts to paper - have to really think about them, sometimes I have to write them several times before I get them the way I like.
A speach is something I could never do in school. I think I managed to get away with only one in high school.
January 24, 2011 | Mom
Monday, January 24, 2011 at 4:20AM
If you look at the right pane of this blog, you will see a few new links that I added last night, so that you can access RSS feeds for posts and comments. If you click one of those, you can "subscribe" to the feed, then use the orange icon that probably appears somehow in your browser (at the top of my Internet Explorer).
I think it's especially interesting to see all the comments I'm getting from people. Click that comments link, and I'm sure you'll also find it interesting.
Some statistics:
· 55 Visitors (Past 24 Hours)
· 107 Visitors (Past 7 Days)
· 324 page views on Saturday
· 360 pages views on Sunday
Wow! For the moment, I feel I'm out of topics to write about. I'm sure that I'll have more as or after we visit the psychologist on Monday, February 7th. I may go quiet here for a bit. New week - new work to be done :-)
Thank you, everyone, and please share with your family and friends to keep the dialog going. Children everyone need to be treated as individuals. The time for a single approach to every child is LONG past! As I said before, if this is Asperger's Syndrome that we're dealing with, it's not a disease!
Happy Monday!
Monday, January 24, 2011 at 8:28AM
I went into the school this morning to drop off my kids. I was a bit nervous doing that, because I wasn't sure how people were reacting to what I've been doing. The reaction was an outcry of concerns. Are you sleeping yet? Why were you up at 4 am? ... The truth is, I haven't felt this good since I was about 10 years old. Back then, I was always authentic. Honest to a fault at times! What you are witnessing is just me going back to being the "real" me. I hope my story somehow helps others to do the same. I feel great, so stop worrying about me and live your lives! If you relax, I will relax!
Reader Comments (4)
Be the real you, Christine!
Continue to be brave and be patient with other people. (AL ABC rephrase)
The best time to discuss how anyone feels is not when picking & delivering the kids.
It's a bit odd, but you can look miserable and not be. You may look ok, but be miserable. Wonder if the last is the worst option...
I've read a small sampling of your postings. Very interesting and informative on AS. My 17 year-old son named TOM ! ; ) has moderate learning disabilities so it is interesting to hear about your own children and their challenges.
re: Sleeping problems ?
Excitement and overstimulation are my sleeping impediments. Get off the compute mid-evening at latest and read a book or watch the history channel ! : ) online reading can keep me awake half-the-night. Try warm milk too with that book : )
God Bless you !
I've discovered "Sleepy Time" tea. Sipping it now. You were (and still are, just not to me directly) an awesome manager, Peter!
@Jesper - I'm reviewing comments here and just realized I somehow missed your previous comment. I think I'm "out" here now, really being the "real" me as you say. I look forward to getting to know you better, as we continue our discussions about Authentic Leadership and StrengthsFinder. These are very exciting and hopeful times for me, and I hope you share my enthusiasm. You have been a source of inspiration for me. Keep up your good work as well, and remember to have fun, too!
Monday, January 24, 2011 at 10:56AM
Morgan was playing a song called "Connected" from the Barbie Diamond Castle soundtrack this morning. I opened my inbox. I had a message here from "down under" (Australia), where the flooding is pretty devastating right now. This mother wrote that teachers make an extraordinary difference. She has been taking one of her children to a child psychologist because he was having a lot of problems with frustration/anger/anxiety at school. She said it has made an amazing difference having someone teach him some new skills to deal with bullying, anger and to understand his feelings - it is ongoing, but great progress to date. Most importantly, he seems more settled and was generally happier at school (although the kids are on summer holidays at the moment). It had been suggested to her a while ago by a doctor friend, but she (like me) tried other treatments first.
Isn't that great?!
Reader Comments (2)
Hi Christine,
Providing Asperger kids and young adults with social tools to understand and cope with what is deemed normal social situations is key.
My two boys and my family have had the support of TUOI (Trait-d'union Outaouais - http://www.traitdunionoutaouais.com). They have a toll free number and may have a Canadian Listing of organizations in your area that provide similar services) for the past 7 years and the results are evident.
My Eldest is now at College studying Technical Documentation (archives, libraries and document management skills) and has his group of close friends - some with Learning difficulties or various syndromes and some without. He also has a part time job in a convenience store/gas station. The social toolkit that he picked up with TUOI provided him with ways to deal with social situations that he cannot analyze by himself and deal with. Its true that even if these learned social skills are helpful, there will always be situations where there is no learned social scenario available, but 90% of the time is better than no way to handle a situation all the time.
Needless to say that seeing a psychologist is required to get a firm diagnostic but the real work is in identifying your child's specific needs, providing them with the social tools and also sharing the knowledge with your child's surroundings: teachers, daycare workers and with proper simplification for the children in their classes. Ages between 8 and 15 are the most difficult since some other kids are extremely skilled at picking on the kid-that-is-different. Only when the other kids reach the 15-16 years of age bracket can you expect them to understand and accept the difference in your child. Its not easy seeing your child come back home angered by kids in their class/daycare/bus.
Bottom line is that with the right social tooling and your support, your kids can achieve their goals at their own pace.
Hope this helps ...
Encouraging, Claude. Thanks!
Tuesday, January 25, 2011 at 3:09AM
Temple Grandin wrote:
"Unlike those of most people, my thoughts move from video like, specific images to generalization and concepts."
When I work on an architecture paper for my work, I always think in pictures first. Many of my papers have complicated pictures showing computers in networks and other designs that take me hours to draw on my computer. I seem to enjoy spending great amounts of time on 'pictures' (block diagrams, flowcharts, project plan outlines, etc.). After that, I go to the even more lengthy, busy work of adding words to explain the pictures. I never realized that's what I was doing!
I also seem to think in "lyrics". I woke with this playing in my head:
It seems that Barbie movie has a whole new meaning for me now. Children are so great!
I had 7 hours of sleep last night. I'll go back to bed after I write these thoughts - I seem to need to write my thoughts when I think they might be worth sharing. When I'm writing a paper for work, I often end up sleeping less. This must be why! Progress!
41 people read 507 pages here yesterday. That's about 12 pages per person. I've only written 5 pages. What does that mean?
I wonder what today will bring.
Does anyone else think in lyrics or pictures like this?
Still wondering, is this Asperger's Syndrome? If so, why does it seem to need to be "diagnosed" and treated like a disease before a person can be helped to understand this? Really, why not call people with AS "visual thinkers" instead, if that's what all this is about?
I believe I work with MANY very talented "visual thinkers". I think that must be why I like the people I work with so much!
Right now, I think I'm visualizing a world where we're all authentic, open people. I've been going to my busy work of trying to explain that picture to everyone :-) Is my message clear yet? Is everyone reading this now ready to speak their minds to me, or do I have to write still more?!
Update on Tuesday, January 25, 2011 at 4:19AM by Christine
It occurs to me:
* In junior high, I once visualized a door cover for a contest, and then had several people involved to decorate that door with the cover from "Black Beauty", and we received first place.
* For 5 years in a row, I visualized a Haunted Hall fundraising event for United Way, and then wrote detailed plan and led people into action to make that event a reality.
* I've visualized Silent Auctions, Book Fairs, Pancake Lunches, and the like, and also led those to take place.
* Last year, I visualized the teams all coming together for the Race on the River, and then I led those teams to their race locations and such.
* I've visualized installation script steps, and then written software program scripts to automate tasks for installation.
* I've visualized the architecture elements for CSC's SMRC (Bomgar) and Desktop Protection (McAfee) services, and then written papers and project plans to make those a reality.
... and the list goes on!
What's next?!
I suppose for me a picture is worth a MILLION words!
I see a world where everyone is authentic and open, focusing on their strengths and virtues, and letting go of the negative energy that seems to eat everyone alive. How do I make that vision a reality?
Oprah would be proud. I think I've just had my AHA moment :-)
Update on Tuesday, January 25, 2011 at 2:07PM by Christine
Reflecting on what Temple Grandin said in the podcast:
... 1) Photo Reality Visual Thinkers - "think in pictures"... might fit me, but I was not poor in algebra as she describes
... 2) Pattern Thinkers - music and math minds... more abstract, tend to be engineers, computer programmers... that might be me (but I don't have issues with reading)
... 3) Verbal Thinkers - know every fact about everything (sounds like Kevin with trivia, when he's interested in a topic)... make good journalists and stage actors (Kevin is a good storyteller) ... so NOT me!
Perhaps I'm a combination of Visual and Pattern Thinking?
I "can" write articles for newspapers and such, but I would not say that's a natural talent for me. I take too long to get to the point ;-)
Update on Thursday, February 10, 2011 at 10:00PM by Christine
I just watched the movie "Temple Grandin". She is one very smart lady. I let all three kids stay up late tonight to watch the movie. Their teachers may not appreciate it tomorrow, but the kids were VERY interested and I felt it was one of those teachable moments that could not be let to pass. It was an excellent opportunity to discuss how different people can be treated inappropriately, and how different people can rise above that and do amazing things. The message in the movie is fantastic, in my opinion. Connor is now thinking he wants to not only be a farmer, but also save animals from cruelty in general.
References (1)
References allow you to track sources for this article, as well as articles that were written in response to this article.
at Secteur mr on July 14, 2012
[...]An Experiment with Globally Distributed Mass Collaboration - Is It Asperger's Syndrome? - Thinking in Lyrics[...]
Reader Comments (2)
This is from a song called "We are the children of tomorrow". It's from an episode of "Fraggle Rock" (great show! :-)
January 25, 2011 | RC
That's right! Thanks for reminding me, RC! I loved that show!
Tuesday, January 25, 2011 at 5:11AM
Please help me form another vision...
What can we do so that the Nova Scotia government (and governments around the world) will INCREASE social skills training and support in education, so our children's creativity is not smothered, while still balancing our financial budgets?
If you can help me visualize what could be done, I think I want to make it my life's work to make it a reality :-)
Update on Tuesday, January 25, 2011 at 5:26AM by Christine
Tuesday, January 25, 2011 at 10:02AM
I think the school curriculum should be completely re-vamped, so that all the things kids need to go outside to get are brought into the schools somehow. 4-H, Girl Guides, Scouting, Ballet, Swimming, Hockey, Soccer, Service Learning, Raising Self-Awareness, Personal Finance Management, ... all of it!
Why are those phrased as "extra"? I know I learned FAR more from these activities than in school. Sorry teachers, but I forget most of those facts you had me memorize and record on tests.
Why is it that the kids have to sit in school all day - many of them bored - and then have to continue along after hours to do the educational stuff that is fun?! It's wearing everyone out! I think that if we somehow brought those activities, along with social skills training as provided by the psychologists, etc., directly into our schools, we'd eliminate a LOT of the problems people face today with parental burn-out, and everyone would be better off for it.
Am I dreaming in technicolour?
Financially speaking, I can't afford to "quit my day job", but I'd love to work on this project!
If this makes sense, how do I get there?
Update on Tuesday, January 25, 2011 at 10:52AM by Christine
Perhaps figure out what it's costing parents now to pay for all the extra-curricular stuff, including costs for gas and supplies, medical costs due to extra stress, and then increase taxes to cover these things and bring them it into the schools, using more than just people with a B.Ed. degree? I know, that would be a huge change, but could that work?
Reader Comments (5)
If there was a "Like" button here, I'd hit it!
January 25, 2011 | RC
I applaud your passion and desire to improve the state of education in NS. It can certainly use people with ideas and a real love for kids. But regarding this I will say you are dreaming in technicolor. NS is already one of the highest taxed provinces. We don't need higher taxes. The cost would be astronomical. The gov't can't be trusted to run all of these institutions efficiently or in a cost effective manner. School boards are already out of control without giving them more programs to administer.
Schools already have phys ed programs which should be teaching soccer and basketball, etc. There is a learn to swim program in many schools around grade 3. There are health classes that could be part of learning about ourselves. I have never been in guides or 4H so I don't really know what they do but there may be elements of them that could be brought into the classroom without bringing Guides or 4H into the school.
To put all of these programs in the schools would require more facilities. We already can't get the proper ice equipment up in the highlands and now Halifax wants to keep what they were finally supposed to get so they can keep their oval.
And you would need to look at why these other groups started in the first place. what is their philosophy? It may differ from the public system.
There is also the fact that a lot of these organizations are mostly volunteer run. You'd be taking opportunities from people who may want to be involved in the community in such systems by making it run by paid staff. Not to mention that some people homeschool and look to these activities as ways to get out in the community and expose their kids to the wider world.
And I think the questions that need to be asked are "What is the purpose of the education system?" "What do want your kids to learn?" 'Why are private schools so successful?" And what about other systems of learning such as Waldorf and Montesorri? It is dissatisfaction with the public system that people homeschool or put kids into private schools. I don't think that bringing the community into the school in this fashion is the answer. The school is part of the community. It can't be the community.
Believe me, I think there are problems in the school system. But the school system cannot afford to be all things to all people. And some of the problems reside not with the schools but with the parents. Some parents just don't care about their kids education and don't encourage them to learn. If the parents don't care about education that will rub off on the kids and they won't care either.
January 25, 2011 | Bev
I appreciate your response, Bev. I agree, we would not want to eliminate ALL extracurricular activities, and I wouldn't suggest "4-H' exactly be brought in... What I meant was, there are elements of these programs that could be brought in more often, to make the learning experience more interesting. Also, I see no reason why we cannot ask community volunteers to come into the schools to demonstrate some topics (actually our school is doing that a bit now). My feeling is that there needs to be more "interesting stuff" in the schools, and borrowing ideas from those other programs could lead to that, as could trolling the internet for neat stuff like the snow experiment. As for higher taxes, my suggestion was that parents are already paying "extra" for "extra"curricular activities, so putting it into taxes shouldn't make a difference. I see your point about government management of finances, at this moment, but I also think there is room for changes there and that we should all be working together to get there, rather than always blaming the politicians. In my view, politicians are just people like you and me, often educators in my experience, and they are doing what they think is right, most of the time. Yes, there are exceptions, but I've met a lot of very kind, smart politicians who I believe really are good for society as a whole.
Furthermore, (before I start a flame war here), I don't REALLY want to raise anyone's taxes. I agree there are probably ways the government can be more efficient with the funds already available. I've proposed technologies like Bomgar to avoid fuel costs to fix computers, as well as other ideas. I also think there is opportunity to use less paper and ink (more computers), to further save on costs. We'll see where my ideas go, if anywhere :-)
You know, it's supposed to be a paperless society but we get more paper now than ever. It doesn't make sense.
I can agree that some people enter politics for the right reasons. But I think the system is wasteful as a whole, as opposed to individual people. I worked for the Dept of Justice long enough to see the administerial waste. Anna's principal believes that 50% of the school board could be gone without hurting the kids. I don't blame the individuals who have the jobs, but the system that created unnecessary jobs. It's like an expensive make work project.
I agree there could be more interesting ways to teach kids - and they all learn differently and have different aptitudes. I have seen arguments made for letting some kids leave school at 16 and become an apprentice. Not everyone needs to go to university. I don't think they should be free to just go sit at home and play xbox, but to do perhaps another kind of training. Mentoring programs could be quite helpful.
But gifted and passionate teachers can make all the difference. My chemistry teacher was so excited about chemistry he practically bounced around the room. And I had an amazing math teacher. It's hard to make quadratic equations fun but a teacher with a passion for math can make the class interesting. And we could all use Bob MacDonald from "Quirks and Quarts" with his props to help teach science. But not every teacher is so gifted or excited about teaching. And some kids are going to hate it no matter what.
I really don't have the answers to fixing the education system. It seems suited for the lowest common denominator. I think kids with special needs are at a disadvantage and that includes gifted kids. I also think the school culture of drugs everywhere is just as big a problem. Talking to someone "in the know" and it seems like you are unusual if you aren't doing drugs in high school. I do consider that the day may come when mine are no longer in the public system. I think the idea that "bigger is better" in terms of schools isn't working. It is when you put 500+ teenagers together that real problems turn up and spread.
Anyway, this is getting long and I'm tired. G'night. :-)
January 25, 2011 | Bev
Tuesday, January 25, 2011 at 2:09PM
Temple Grandin is awesome!
Ideas from her TED podcast, to help children on the spectrum:
1) Show children interesting stuff, like science! I think I got a lot of this from Girl Guides growing up! The Grade 5s did a fun experiment at the school yesterday, and made the CTV News. They did this based off a YouTube video. I'm not sure exactly which one that had seen, but here's one that gives the idea: http://www.youtube.com/watch?v=k_k13fo4pr4) I'm trying to get a copy of the podcast from CTV News as well.
2) Give children lots of jobs with specific tasks, at a young age! This teaches children to be on time, good manners, and to learn to do "assignments" (instead of fixate on other things). I reflect now that I had LOTS of jobs when I was younger... wash the dishes, clean own room, babysitter, flyer stuffer, waitress, door painter, toilet cleaner (more than one part-time job at a time in high school)... maybe that was how I managed to get past the condition :-)
3) Expose children to lots of good social stories (or role playing)! She didn't put it quite that way, but that's how I'd put it, based on other reading I've done... From this, they can learn social skills (how people like other people to behave). We watched Disney movies, Fraggle Rock, Little House on the Prairie, etc. every Sunday night at our house! Too many shows for kids today show bad manners!
NSCC has a "Service Learning" program. I think it's excellent, but now I think it belongs as early as elementary school!
Reader Comments (2)
Don't you wish that more shows like that were made I don't think it is necessary to teach kids how to curse or jump into bed with every available You havé to sonder chat values we are teaching them
January 25, 2011 | Dad
Don't you wish that more shows like that were made I don't think it is necessary to teach kids how to curse or jump into bed with every available You have to wonder what values we are teaching them
reposted as I was having keyboard trouble with the ipod and could not correct for some reason
January 25, 2011 | dad
Tuesday, January 25, 2011 at 3:18PM
I need to get off this computer for a while. Before I do, these are the songs I now have playing in my mind:
and
I think it ties it all together very well.
Have fun!
Tuesday, January 25, 2011 at 10:30PM
I think there is one more message I need to make very clear...
My son, Connor, has been known to have social skills issues since pre-school. When we entered the public school system, this was recognized, but we were unable to get him an Educational Assistant. We were told that an EA could only be assigned to a child if that child is formally "diagnosed" with a "label" indicating a condition that requires support.
We have consulted:
- A family doctor
- A pediatrician
- A private psychologist
- Another pediatrician (referral for brain scans)
- A neurologist (brain scans)
- A school psychologist: psychoeducational assessment- Difficulty with responding when he thinks he may not be correct – most likely extreme thinking (help with uncertainty and low-self-confidence). Verbal skills are not as well developed as his non-verbal. Frustration and meltdowns.
- A speech-language pathologist that does autism support did some observation
- Another family doctor
- Another pediatrician
- An autism specialist - indicated not autism (seems may not have assessed Asperger's)
- An interim intake/referral coordinator in the child & adolescent services division
- An individual therapist with the child & adolescent services division
- Another registered psychologist with the child & adolescent services division
- A psychiatrist
- A group therapist (participated in a social skills program outside school)
- Back to first private psychologist, to discuss re-assessment since 3 years have passed
- Suggestion to go back to the IWK and look for an Asperger's assessment
- Suggestion we find a private psychologist that specializes with Asperger's Syndrome
- .... going for our first appointment with this private psychologist that specializes in the area of ASDs on Feb 7th!
We have been very fortunate to have had very caring teachers support Connor during the past 6 years, and also to have EAs each year assigned to another child in his classes, and a Resource Teacher available, willing to lend support outside their job responsibilities. If there didn't happen to be another child in his classes that needed support (which is quite likely to be the case next year), or there wasn't a Resource Teacher available (as provided by the "Learning for Life" program), Connor would have been without that support.
I reflect that, even if the class size was very small, Connor would still need one-to-one support, which the classroom teacher could not give while teaching the other children. I believe that Educational Assistants and Resource Teachers are critical to the success of my child.
I would like to see the "Learning for Life" program in Nova Scotia expanded, to include social skills support for ALL children that seem to need it, and not just those "diagnosed" and "labelled".
Update on Sunday, January 30, 2011 at 5:16PM by Christine
My friend in Denmark added: "The predominant offering in DK is TEACCH But we disagree, that the best treatment is to rearrange the world around the child with (or without ASD), but strongly believe that we should train and guide then to be more active in the world. Give them tools, and help them to learn what they have trouble learning naturally."
Something more to consider / so much to learn :-)
Thursday
Jan272011
Thursday, January 27, 2011 at 6:33AM
If you've gotten this far in reading my blog, I hope you understand my position.
I feel strongly that elementary school education should include formal social skills training and support, in classrooms everywhere, beginning at the Primary/Kindergarten level (if not earlier), to ensure that ALL children are able to develop social skills, even when they are not formally "diagnosed" or "labelled" with a specific condition.
Earlier this week, I opened a "petition" online, as another means of raising awareness on this topic. I recognize that politicians will not look at such petitions (they want hand-written signatures only). I feel sending this petition around Facebook could still have some benefit in raising awareness.
If you support me, please consider signing my petition, and also consider sharing it with your friends.
Thank you!
Friday, January 28, 2011 at 12:26AM
I wasn't going to share this, because I honestly feel quite embarassed that things got to this point. However, I had a conversation with someone this evening that told me clearly that my sharing is helping her, and she felt probably also many others as well.
Today marks one week since I started this new way of addressing my issues. I took these pictures for myself, so that I would have something to look back at one day, to remember just how much I had gone through.
At the beginning of today, my office looked like this:
By supper time, it looked like this:
Before bed, I found myself rolling primer on one of the walls I had patched earlier in the day.
So it goes... I am "patching" all sorts of things in my world, both literally and figuratively.
I observe that, as I begin my second week with this blog, I have had 220 unique visitors to this site, and 1905 page views. I've had some life-changing conversations, and yet I'm left feeling that so many more such conversations are yet to occur! So many people I know still have not yet fully read this story, and so have not yet processed what's going on with me.
This leaves me with feelings of anxiety like I've never felt before, but also feelings of hope and excitement about the possibilities for my future. I have not had a single negative response from anyone! In today's world, I feel that's a very big, positive thing to be celebrated.
I hope more people will learn something from my story, and choose to come "out" as I've done, to talk to each other and get things out into the open.
Have a great weekend!
Reader Comments (9)
Congratulations on a great job already - both pratical and otherwise. Go with the drive when you have days like this, and don't feel bad about days with little progress. The journey is never over and will consists of small steps one day, huge leaps in other days.
Hi again Jesper :-) I'm curious... Since you have had experience with autism, are you learning anything from what I'm writing, or is this "old hat" to you? Are there other ideas/topics I haven't thought of/shared, worth exploring?
I read it everyday, just not so great to get my thoughts on paper. You guys are so good to get your thoughts out!
January 28, 2011 | mom
Technical comment: Would be nice if the pictures actually opened when clicked on.
Other comment: lose ends are great to give you quick wins on feelings of accomplishments. Looking around at all the lose ends you have... not so much ;-) My philosophy is that you can't eat a cow in a single sitting... during the course of your life, you probably eat the equivalent of many cows and it's not so painful (at least not for you - I can't speak for the cow). I make lists and depending on the magnitude of the accomplishment - I'll celebrate them -- can be as small as treating myself to some ice cream or buying something purely for myself.
I can't seem to figure out how to get the pictures in there clickable... I could post them on another site I suppose, then link to them... Instead, I've made them a wee bit larger. Hope you can see them now :-)
You should see my music room. It's where I dump the stuff I have to shift to keep the rest of the house tidy. Unfortunately I don't have enough time for music and if I did, I'd have a lot of clearing out to do first!
January 28, 2011 | Mike
Mike & Christine: I have a LEGO cave in our storage room, not much but worth every minute clearing up for. I should go there more often to unwind.
Christine: I have just started as well, keep posting. As I have written you on C3 you put it to print very well. I can handle the occasional recap ;-)
Jesper and Mike, I think that there are very few houses without at least one trouble spot - I still have another room to go... my basement is a nightmare still ;-) Having said that, I think perhaps you are both also "pattern thinkers" (a.k.a. music and math minds), which stands to reason since you are both enjoying your career success working in CSC in roles similar to mine. What do you think?
If someone notices a post from "Tom", then another from me (same text), that's just because I forgot to click "Login" before typing, and Tom was on this computer before me. He's my 10 year old son. I've deleted the accidental comment post, so you shouldn't be able to see it outside the RSS feed now.
Friday, January 28, 2011 at 6:11AM
I wrote in my post called "Thinking in Lyrics" about different types of thinking. I've reflected quite a lot on this since that time. Someone else this week told me that she felt that children should be helped very young, to understand how their minds work - to identify if they are visual, pattern, verbal, or ? thinkers.
I now think I am a "Pattern Thinker", or perhaps better described for me as a "systems engineer" ... I am a "Systems Thinker": http://en.m.wikipedia.org/wiki/Systems_thinking?wasRedirected=true
Earlier this week, I placed an online order for some books and a DVD about Temple Grandin:
Estimated delivery time: Mar 21-24, 2011! I didn't notice that until now, re-reading the email saying when I'd received the items... so far away! :-)
Does anyone know if these resources cover this area of study - types of minds, how to identify them, and how to help children understand and develop them? I think this could be a fascinating area for any educator to study. I wonder if knowing Connor's type of mind could lead to help for him somehow.
Happy Friday!
Reader Comments (2)
Where did you purchase these from? Canada / USA? Good to shop around at times. If you have a kindle / iPod Touch / iPad etc... you can often get titles immediately buy purchasing from the Amazon.com store (if you don't mind digital editions - but that's a whole different discussion).
Esthetics comment: if you bought online - it's considerate to link to the book's page from the store you bought. This allows the reader of your blog to get much more detail about the item in question. Example - your 1st book (and it has a kindle edition ;-) so you could be reading it tonight): "Thinking in Pictures, Expanded Edition: My Life with Autism"
I've gone through and re-done the various book/song references, so they link as much as I could figure out. I've chosen to get regular books because I want to be able to share them with our school. I have an iPod Touch, but I don't enjoy reading for long periods on it. One day I hope to get an iPad instead :-)
Friday, January 28, 2011 at 12:22PM
I've created a new page on this blog site.
You can access this page using the "Interesting Stuff!" link, or click here.
Sunday, January 30, 2011 at 5:07AM
If you are a parent of children "on the spectrum", chances are you've heard about the MANY symptoms of these conditions. Chances are you have shook your head many times, so overwhelmed and confused, and wondering all the time, is this really happening?!
Click here to read one of many good documents that seems to summarize this.
For this post, I'll focus on the onset of ASDs... Officially, most people only identify Connor as "probably" having an ASD... More recently, at age 8, I think most people feel very strongly that he has Asperger's Syndrome. Regarding Tom, at age 10, I reflect often that the most common feedback I get is that he's very hyper - perhaps he has ADHD. Regarding Morgan, age 6, people will often say to me, "Do you really think Morgan might have an ASD? She's so sweet and calm!" Yes, I do think so, if there actually are such thing as "disorders".
Here's where I'm coming from, when I say that I think all of my children are "on the spectrum". Again, no one is formally "diagnosed" or "labelled" yet. We have an appointment with a psychologist on Monday, February 7th, where I hope this will begin to be confirmed, so that I can ensure my children have assistance as necessary in school.
When Tom was a baby, he was extremely difficult to settle. We would spend nearly every hour of the day trying to settle him. Doctors would tell us, "He's your first child! Try to be patient. It will get easier." I would go home and cry, I was so frustrated and exhausted! We would walk the large, open concept house we had at the time, bouncing him up and down, and then put him in his bouncy chair, and bounce that chair ALL THE TIME with our foot or hand. We'd go for long drives, just to get some peace while he was in the car seat. Using the vibrating feature did not work. Singing did not work. Those automated swings did not work. So much, DID NOT WORK! He was very difficult to breastfeed. After I think about 4 months of this, I became a Discovery Toys consultant, finding myself searching for someone else in my situation, anyone that could help me understand and deal with it all. That's when I found my first La Leche League Canada leader, and I have to say that woman saved me! She helped me with Tom. After several months, I was finally able to breastfeed him and get a bit of rest myself. (It turns out now that her son Mason, also a baby at that time, has been formally diagnosed with Autistic Specrum Disorders. She knew exactly what I was going through!) When Tom's tummy was full, he would sleep for a few hours, and so would I, and then we'd start again. I think the change really happened somewhere in his second year, where we were finally able to settle him down and get several hours of sleep in a row. Now, at age 10, he's described as hyper. He doesn't focus on teachers well. On the other hand, he's a very smart boy, very artistic and creative (I will never be able to draw or write stories like he can already), and his personality is marked with intense positivity. I reflect that his eating habits have all been pretty balanced as well, pretty much like the "books" say you should expect. Thank goodness for small miracles!
When Connor was a baby, he was rather a treat in comparison. I recall that I was very taken aback by how much easier it was. I'd put him in that same bouncy chair, and he'd snuggle down and sleep! I was able to nurse him while sleeping on my side. It was so very pleasant. I actually became antsy for something to do with myself in that year that I was able to stay home! I continued as a Discovery Toys consultant. I also became a Norwex consultant in that time, finding myself always NEEDING to get out of my house and always looking for new mothers and grandmothers to talk to. However, at about age 2, things with Connor changed. Suddenly, he wouldn't sit quietly at supper anymore. Suddenly, he seemed to be screaming about everything. At age 8, he still seems to be a very frustrated little boy, though in this past week or so I have seem some very encouraging calmness at home. On the other hand, he's an intensely loving little boy. He will carry one of our kittens, Yang, around the house, nuzzling him close and saying "ah" all day long. He will come up to us, and his teachers at school - seemingly out of nowhere - and just give you the biggest hug you've ever had! In Primary, he actually tried to kiss and hug other kids as well, but we guided him away from doing that, and mostly he now complies. I reflect that his eating habits seemed to start out okay, but then he switched and now we seem to fight every night because he no longer wants to eat his vegetables or meat. Despite having and enjoying foods like "sloppy joes" MANY times before, we have the same LONG discussion every time we serve that food (or anything else, for that matter)... He'll say "I hate that." and jump around in his chair. We'll say, "No, you don't. Remember, Connor? You had that last week. You sat here for an hour and we had the same discussion. You loved it after you had one bite. Just take one bite, and if you really don't like it then we'll get you something else." Finally, usually after about 30 minutes to an hour of this coaxing, he will take a bite and switch: "I love this!" Very frustrating!
And then there's Morgan. As a baby, Morgan was much like Tom. She was VERY difficult to get to sleep. The challenge we had with her was that she was even more unsettled than Tom! She didn't like the bouncy chair. She wanted to be held instead. I don't mean sit down and snuggle held either. She wanted to be walked, night and day! Approaching age 2, she loved to eat EVERYTHING. She'd eat stew, chili, carrots - you name it! Then, again suddenly, she changed. At this point, I'm lucky if I can get her to eat macaroni and cheese (with very specific ingredients... don't even bother trying to change that!) or a bowl of oatmeal WITH raisins in EVERY bite, or some toast with peanut butter. She'll eat some fruit and dairy products. She'll try all day to get you to let her have "high carb" foods, like crackers, and "high sugar" foods, like apple juice. The nutritionists will tell us not to give in. Let me tell you, I've tried not giving in. I've literally gone through short periods of 5 or 6 days, where I'd refuse to give her those "bad" foods. She always went into severe shakes and just refused to eat anything! As a mother, I've now decided that I need to "cave in" and just let her choose from the variety of milk, fruit and grain products that she will eat. She won't touch meat or veggies, except peanut butter, and except the eggs I slip into the almond flour based pancakes that I often make for breakfast. So far, she seems to be doing pretty okay with. Lately though, she's gone back to crawling into bed with me again often, she's very hard to get settled into sleep, and she's getting more and more cranky.
As you perhaps can understand now, all of my children seemed to experience a marked change in personality after about the first year or two. This is commonly described as a symptom of autism. This is why I think all three of my children are probably "on the spectrum" somehow.
Monday, January 31, 2011 at 1:56AM
Based on responses I received last night, I feel there is a point that I've not made clear, so I'll say it clearly here:
I do NOT think that anyone in my family has any "syndrome" or "disorder" or "disease".
I have chosen my words in the title of my blog very carefully. I have also worked very hard to try to never actually say that my children "have" ASDs. Sometimes I've failed to do this in my posts, because actually at this point so many people have told me they think so that I've sometimes believed it myself. I've strived to say that my children have been "described as", but never that they "have" any disorders.
"Disorder" though could be viewed in a positive light. If you feel your child fits the descriptions of "autism" as a "disorder", I hope I do not now leave you feeling like I've just broken a connection that I've expressed that I feel we have. Quite the contrary. I feel a strong connection to people with children given the "label" of autism. However, I assert that I think your children may merely approach things in an "order" that is different ("dis") from the majority. From my viewpoint, I think this can be a VERY positive thing, but can also make your child have negative feelings, and of course those need to be dealt with.
The title of my blog is a question that I've been forced to pose to myself every day for quite a long while now. It's been a source of intense frustration and anxiety for me. Because I was led to this place, I developed some very negative feelings about myself, feelings that I feel now I am overcoming. Based on feedback I've received, I am not alone, and so I have felt need to share my personal story, in hopes that someone else somewhere will relate and also feel better, and perhaps this will lead to positive change!
My stories are intended to illustrate a point. Based on all I've read about ASDs, I think that I could make a case to state that pretty much anyone I know is "on the spectrum" in some manner, and I'm using my personal experiences to illustrate this point.
- Is it that a child "does not easily look people in the eyes" or is it that a child is "more easily able to think when focusing on the subject at hand instead of someone's facial features"?
- Is it that a child "cannot make small talk" or is that a child prefers to use his/her energy to "talk about things that have a stronger purpose" in his/her mind, or perhaps has been left feeling insecure about saying anything?
- Is it that a child "does not have imagination" or is it that a child actually is just more "focused on logic" than the other children he/she is playing with?
- Is it that a child "does not easily connect with people their own age" or it is that a child "does not think the same way as the majority in his/her generation" or perhaps "relates more to people who have had more life experiences" or "wants to be looked up to by those with less life experiences"?
- Who on earth doesn't like "structure" in some form?
- Who on earth doesn't rather focus on his or her own "interests" over other things?
- Who hasn't felt confused during the teen years, as he/she learns about the "facts of life" and especially if he/she seems to be learning those facts later than others?
- Who hasn't found himself/herself "obsessed" with something for a while?
- Who would not feel anxiety for a long time, if that someone had gone through traumatic experiences?
- Who doesn't have "quirks" that other people would find odd if they knew?
- What child doesn't go through a "stage" where his/her behaviour changes in marked ways at about age 1-3?
- What child would not benefit from the suggestions made to "help children with ASDs"?
- Why does society generally feel need to say that a child is "different" or has a "disorder" just because he/she does things dramatically differently from other people?
My point is that I think that the strategies offered to help children described as "on the spectrum" should be used with EVERY child in the public school system. I think EVERY child could benefit from more "interesting stuff" in school. I think EVERY child could benefit from skills learned by doing "jobs". I think EVERY child could benefit from good "role playing" or modeling of what good behaviour should look like. I think EVERY child could benefit from being taught to be authentic and learn relaxation techniques. I think EVERY child at times could benefit from an adult mentor (educational assistants), close at hand, to help him/her stay focused on the teacher. I think EVERY child could benefit from more self-awareness about how he/she thinks - visually, with patterns, verbally, etc. I think EVERY child approaches food differently, and there is too much obsession about "fixing" that - I believe I have focused on that too much and just made matters worse, and sobeit/now I need to accept that and move on.
EVERY child is different. Put yourself in the place of a child like Connor... He went through a stage where he was constantly being told (including by me)... Sit still! Be quiet! Don't hug/kiss other people like that! Look at me when I'm talking to you! ... His positive energy has really been squashed significantly over time. Wouldn't you be frustrated?! Now, imagine you've been dragged to specialist after specialist, and they are all saying you are "different" and "might have a disorder"... Geez! No wonder he has anxiety!
I think that the need for the public system to have a child get a "label" before he/she will be taught such skills for positive social development is ridiculous!
I am only continuing through this process with yet another specialist because I want to see this change. I want to continue to hear what the specialists in this area have to say. I'm sure they are very smart and have many great ideas to help our children grow in positive ways. I'd like to see them more directly involved with our chidlren. If I can, I want to be a part of eliminating all this anxiety - to change the public system's approach so that no child or parent is left in the state I and my children have been in!
Do I make sense? I am VERY interested in parent feedback on this.
Update on Monday, January 31, 2011 at 1:10PM by Christine
Dad said the "label" just "kicked him" in "the gut".
Reader Comments (3)
Today's entry is amazing! It puts into words exactly what I've been feeling about your blog but just didn't have the words to express. I think EVERYone could benefit from reading this!
January 31, 2011 | Lynn
what se said ;-)
Great POSITIVE bullet list
Hi Christine: I read your blogs..actually twice... they are very good and make people think about how quick we are to categorize people...I'm with you..we are all quirky in our own way, we all have fears, anxieties, and issues in our past that affect who we are and how we think...I also think there are many types of intelligence and as hard as we sometimes try... we don't always tap into these because of the way we have designed schools...from your blog your children don't seem much different at all than many of the children we have in our schools...being in my position I can tell you we have many children who are in great need because of issues such as Fetal Alcohol, physical and emotional abuse, lack of parenting, severe behavioral issues etc... we also have quite a few children in our system who are very high on the autistic scale and need constant adult supervision...your children are very lucky to have such a supportive and caring mom...as I mentioned above we do have severe ASD children, multi-hadicapped children, children with FAS, children with other diagnosed syndromes such as Downs and children with cognitive challengs...one of our goals in student services is to create independence for these children as they go from grade to grade...another goal would be to treat them as"only as special as necessary"...to do this we need education for all involved ...especially teachers who have the daunting task of creating a differentiated classroom...talk is good...I hope I made some sense in the above...thanks, Ron
Monday, January 31, 2011 at 9:05AM
One of my best friends responded to my story sometime last week. She wrote: "I'm pretty sure you won't mind me saying now that I thought you were an "odd bird" when I first met you. You had trouble with eye contact and with small talk. However, I found you likable and trustworthy (and incredibly hard-working) so that was what was way more important to me. And here we are still in contact after all this time (-: so I hope you know I don't mean that as any kind of a slight, just an observation."
I honestly laughed out loud when I read that! A few years ago, I likely wouldn't have laughed, but I can now. Really, I think we are all "odd" in that no two people are exactly alike. So the saying goes, "It takes ALL kinds to make the world go around." Just as you find something "odd" about me, I'm certain I can find something "odd" about you ;-)
Still, I have sometimes wondered why I was SO very quiet back then. If she were to see me in person now, I think she'd be struck by just how much I've changed in that respect. Sure, I am still often quiet with people, but I now believe that is just my way of dealing with very intense emotions. It's very hard to go around all day chatty and cheerful when you've been through what I have. I've had a lot of "life experiences" that have led me to a lot of intense thinking!
*** Warning - This next part is quite graphic... But it explains a LOT about me, I think ***
- When I was a baby, apparently there was a fire in my parents' apartment. For years, I had nightmares about fires, until my parents mentioned that to me.
- During my early years, we moved around a fair bit, so I'd need to learn to make new friends often. I wonder if that's why in my early years I would avoid making a lot of friends. Maybe I didn't want to have to say goodbye again.
- As I got into my teen years, I seemed to "mature" a bit slower than many, at least in the social skills department. I felt out of place. I think that's true for many people.
- In my high school years, some of my friends had intense life experiences. I knew someone raped by her father, and I watched one my best friends attempt suicide once by sitting on the floor in front of me with a sharp pen cap on his wrists. Thank goodness I stopped him! After twenty years, I'm beginning to re-connect with some of those friends, and some have passed on to the next phase we all most go to someday. It's really wonderful to be re-connecting with those I can now! It's been way too long, and so much has changed/I believe we all have such wonderful (grown-up) new perspective now!
- I've known of people who chased their families with shot guns.
- I've known of men who were very violent towards their families, where their families suffered for years.
- I've known alcoholics who made their families absolutely miserable.
- When my husband was a child, his father went to work on a loader and it flipped over and he was lost.
- I watched a dog run out of a house once and get hit by a car and die.
- I watched a man grab a tiny bird out of the air once and throw it to the ground, he said because it was "disturbing" him.
- I've been told that a woman hung herself in my childhood bedroom closet.
- A friend's brother murdered his children with an ax.
- I lost a friend to a brain tumour.
- I lost a friend to bone cancer.
- I lost my best friend to a drunk driver.
- ... There are MANY more stories like these in my life experiences.
Is it really any wonder that I seemed "odd" or "quiet"? I think NO.
Sometimes I wonder to myself, how on earth can I get up out of bed in the morning and face all of this?!
Then, I remember... It takes ALL kinds of people to make the world go around. If we were all the same, life would be incredibly boring! There are MANY life experiences that are SO wonderful, and we can learn from the ones that are not! Generally, I am able to do my best to focus on the positive. I have an amazingly loving family, and an ever-growing wonderful circle of friends.
Writing this blog is leading me to meet MANY wonderful new people. With 267 unique visitors to this site as of this morning, and 2332 page views, I feel an amazingly positive connection with the world. Not one person yet has replied to tell me to say that I'm an idiot and that I should stop writing such nonsense, so I figure being "odd" like me is okay. People have told me that what I'm doing is a good thing. I hope that somehow my sharing of my experiences helps someone. It's a very small world, and we are never alone.
I've often received advice that it's better to "not share" - some things are better off unsaid. Reflecting on that now, despite all the negativity that surrounds the stories I know, I have to say that I generally disagree. I think it's a mistake to keep things "bottled up" and untold. I think it's much better when people are "open" and "authentic" and say what they are really feeling, even when sometimes it may hurt others. I can say that clearly I feel better for discussing, and I wish that others in my life would do the same.
Now, I must go focus on my "work work" :-)
Happy Monday!
Reader Comments (2)
Good morning Chris,
You wrote: "... A few years ago, I likely wouldn't have laughed, but I can now."
And that's exactly why it never even occurred to me to say anything until now. Not that I was ever dying to say anything. It didn't matter to me. But at this time, in this setting, I thought it was appropriate.
You also wrote: "Really, I think we are all "odd" ..."
Couldn't agree more. You don't have a monopoly on "odd". There are plenty of folks in that club. Yours truly included. (-:
RC
January 31, 2011 | RC
I know, RC :-) Have a PD!
Monday, February 7, 2011 at 9:59PM
Today, we had our first consult with a psychologist that is very familiar with Autistic Spectrum Disorders. This involved a 2.5 hour drive, then 2 hours in the office, and then another 2.5 hour to get back home, plus breaks along the way. Long day.
In the office, the first hour was spent discussing what we had done before. On Friday, she had spent time reviewing all the reports from other assessments done in past, so she was well versed in our history. Essentially, she summed it up to say that she could tell we had been advised that there are MANY possibilities to explain Connor's behaviour at this point, and she agreed that much more would need to be done to get to a diagnosis, IF a diagnosis was even possible!
She advised we go through a process called "School Age Developmental Assessment". The process usually takes 16-17 hours (including her time to do things like type a report).
The first apppointment, which we went through today -- 2 hours. I had to answer MANY questions... while Connor played on the floor between us, rather distracting/showing her all sorts of disruptive behaviours... As he played, mostly happily, but wanting to share everything he was doing... She asked: When did he walk? When did he start to speak his first words? When was he potty trained? When did he form sentences? Have you ever seen him wave at anyone? Does he walk normally? Does he have appropriate facial expressions? and ON and ON :-) It's a good thing I had written a lot of these details down already, because my memory is terrible when it comes to remembering all these details.
Next step... Kevin and I, and Connor's teacher, are being asked to individually fill in some rather lengthy questionnaires and mail those back to the office, before our next appointments, which could not be booked for another two months.
On Friday, April 8th, and Monday, April 11th, we're scheduled to go back to her office, so that Connor can go through two 3 hour assessments... reading, writing, math, and other areas, and also there will be another 1 hour parent interview, plus a 1 hour discussion of her findings. It seems later there will likely be a meeting with the school as well, and perhaps more will make sense after that.
In the meantime, an Occupational Therapist has been assigned to observe Connor in school. Perhaps some good will come from that as well.
Reader Comments (1)
I remember taking many afternoons off for those lengthy meetings with the many questions... some of which are so specific to a timeframe that it its really hard to remember... stay the course - sounds like you're on the right track.
Tuesday, February 15, 2011 at 9:14PM
I've been continuing to reflect on this detail since that time in January, really thinking a lot... Could this mean that my daughter also has Asperger's Syndrome? More and more, I'm thinking this could be the case, and others in close interaction with my daughter are starting to express similar thoughts. Scary.
First, I note that my daughter has had long-standing issues with food, since she was about two. Before that point, she seemed to want to eat everything - stew and chili included! Note that those items include meat and vegetables. Suddenly, at about age two, she switched... She wouldn't eat anything much except macaroni and cheese. Now, it's very slightly better than that... her main meals are peanut butter toast, macaroni and cheese, or oatmeal with raisins, made in VERY specific ways, in a rotating fashion, and some fruit, grain and dairy products on the side. She will not touch meat or vegetables, except the eggs I hide in almond pancakes (which she's begun objecting to lately). Sure, she's doing "okay" nutritionally, and professional nutritionists have advised me not to push her/assured me she will be fine, but I am left with concerns about the dark circles under her eyes and the general crankiness that seems to be getting worse... I throw into that reflective thoughts that Temple Grandin (albeit at the other end of the spectrum if this is AS) just ate yogurt and jello - it strikes me that serious food issues might be part of being "on the spectrum". I spoke with an OT about this last week, and she said it could be "sensory" issues, and those are linked to AS... I'm not at all thrilled with this news.
Next, I read on... From the article above, I note this passage:
"In elementary school, these girls often cope by finding one good friend. This friend is often kind and motherly, and her friendship is a lifeline to the girls with Asperger's Syndrome. In fact, if she moves away, it has devastating consequences. Another way that young girls cope with their disorder is by playing with boys. Male games are rule-oriented and do not require as much social and emotional understanding as female interactions do."
I realize that she seems to like to play with one girl in particular (though talks about others as friends, making me question the depth of my concerns). This other little girl has been formally diagnosed with AS. I'm also recognizing that she doesn't like to share with most kids... She tells me she gave just TWO of the many butterfly stickers she brought to school to share for decorating, and those two went to the one friend she seems to play most with. She seems to really want to be in her own world in many ways, but "plays along" in a friendly way along with the others? [I also note that I generally had one girl friend at a time, when we moved I found it VERY hard to get past "losing" that friend, and tended to prefer to play cars and basketball with the boys, rather than dolls with the girls. I'm now in a male-dominated career.] Interesting?
The little girl that is formally diagnosed with AS apparently has lots of tantrums. I'm seeing this more and more with my daughter... I don't recall doing this to my parents, but I could just be forgetting it... [I remember my sister giving them a hard time at bedtime, but not me :-)] Last night, she was up throwing tantrums about bedtime until about 9 pm. Her bedtime routine used to be "easy", but these days it's definitely not, it seems unless I go out at night and leave the routine to someone else (Dad, Grandma, anyone but me... so I look forward to my nights out, right or wrong).
Those of you with little girls formally diagnosed with AS... What should I be watching for? Could my daughter actually have AS and need professional support as described in these articles? Am I about to embark on yet another very LONG diagnosis journey, this time for my daughter?
Not sure where I'll find the energy. Must be time for bed :-)
Thursday, February 17, 2011 at 8:39PM
A friend loaned me another book this week - "Scattered", by Gabor Mate, M.D.
In the first few chapters, I've learned that this doctor, and his three children, have all recently been diagnosed with Attention Deficit Disorder (ADD), which is another condition that can be present in people "on the spectrum". She loaned me this book because, while reading it, she felt that it perfectly describes Connor and it may have some good advice.
I have to say, just a few chapters in, the descriptions are every bit as striking as they were when I began reading about Asperger's... So much so that, once again, I'm seeing myself and my son in the pages in this book, to a significant degree, though in varying ways.
I'm not far in, but I believe there are people reading my blog that would probably like to know about this... Here's a passage:
"The hallmark of ADD is an automatic, unwilled "tuning out," a frustrating nonpresence of mind. A person finds he has heard nothing of what he has been listening to, saw nothing of what he was looking at, remembers nothing of what he was trying to concentrate on. He misses information and directions, misplaces things and struggles to stay abreast of conversations."
The book goes on to talk about things like... reading an entire book to your child and not having any idea what you've just read (I do that often - seem to think of other things, but somehow still read and cannot answer my daughter's simple questions about something I've "just" read)... situational differences - experiences may vary greatly from one circumstance to the next - very focused in some situations, and very scattered in others (again me - I can be very focused on writing, yet read a story and have no clue what I've read?)... impulsiveness/poorly controlled emotional reaction (certainly me with my crying jags as a child, and certainly my son - especially in group classroom situations)... hyperactivity showing not always in ways I would have thought, like biting nails, tapping feet, etc. (again, me... and my son in much more obvious ways)
The doctor/author of this book also expresses how he feels he made it through medical school... He'd be driven by deadlines. Medical school is apparently a series of short deadlines and tests, and it seems that drives a person with ADD... (again, me) If you watched me study for any exam, you'd know that I make lots of notes for a very long time (and don't generally retain what I've written down), then cram-study all those notes in a VERY focused manner (don't interrupt me/I can be a real grouch) for just a day or so, before going to the exam/because I'm driven by an intense fear of failing. (I'm NOT fun to be around when I'm in study mode, so I avoid that as an adult.) I always did that in school. I always crammed (then promptly forgot most of the info after the test, unless I really felt there was value in retaining the info.)
Doesn't everyone do these things? I always thought so... It seems it becomes a "disorder" when the "order" in your life is disrupted by all these behaviours, and you can unconsciously do all this and not know you're screwing up your kids.
I'm not far into this book, but it apparently has advice to help people with these behaviours... One bit of advice appears where the author writes "mostly I regret what I did not do: give my children the gift of a mindful, secure and reliable parental presence. I wish I had known how to allow myself to relax, to release myself from the compulsions driving me and to fully enjoy the wonderful little persons they were."
People often tell me I take on too much, and I respond by saying that I enjoy what I do, and I do... but perhaps I am exhibiting a form of "compulsion" and in the process not being "mindful" and a "reliable parental presence". Hindsight is 20/20, and if it's true then I can say that really sucks! "Can't go back... gotta move on", as the song goes... I've just spent 45 minutes reading the book/writing this, when I could have spent quality time with my 10 year old. Darn!
I wonder if I actually stand out as "over the top" in the behaviours described related to ADD, or am I much like other parents. Behaviours to consider: Am I overly distracted (especially in my interactions with my kids)? Am I impulsive/do I show poor emotional control? Am I hyperactive?
... If you know me well and feel you can comment, please use the "comment" button included with this blog post to give me your thoughts now. You can put a fictitious in name in the "name" field, if want to remain anonymous. Thanks!
This book is certainly interesting, but tomorrow is another day and I'm trying hard not to work past 9 pm anymore :-) Have a good night!
Saturday, February 19, 2011 at 8:27AM
I record Oprah on the PVR… Yesterday’s Oprah was about childhood rage: http://www.oprah.com/oprahshow/Children-Dealing-with-Violent-Rage/1 The kids are with their grandmother right now, so I decided to tune in this one episode this morning…
I think this is a very important story for any parent to hear. We certainly see moments of rage in Connor, and I know from speaking with other parents that this is more common than many realize. Cononr's rages are not quite to the extreme described in this story, but they are still cause for significant concern for us as parents. I think that if our experiences had gone in a different direction then we could certainly have become this family.
This Oprah story asserts that the children that go through these rages are just the children more sensitive to negative energy. We all feel and react to negative energy with differing levels of intensity. The advice is for the parents to stop worrying so much about the negative ways the child could turn out, and instead think positive thoughts about the child's future, and to teach the child to also think positive thoughts when the negative thoughts start to come in. When I do this, I do see improvements in our household, so I think it’s very good advice. I like the strategies taught to me by The Virtues Project. If you're interested in learning about those strategies, they are described at www.virtuesproject.com, and information about facilitators to further train you in employing these strategies in Nova Scotia is available at www.vcns.info.
Reader Comments (4)
Hey Christine - this is so true. I struggled with this with Skye when she was younger and once I started a reward chart, things changed immediately. We never even got to the reward part, it was just the focus on the positive that changed everything so dramatically. Thanks for the reminder, cause we need a little more of this around here with our younger girls these days!
I love this blog, and think it's so great that you're putting all of this out there. Can't wait to read the next one!
February 19, 2011 | Susan
First, Susan, I want to say thank you for responding to my post. There are times when I feel like I’m falling on “deaf ears”, so it's good to know that someone finds value in what I'm doing, beyond me :-)
We tried the reward charts with our kids. This didn't seem to do much in our house, but until recently I hadn’t considered that maybe the way we presented the chart might have been at issue…
I am a “scattered” person, I’m realizing more and more. I have always thought of myself as a pretty positive person, but I may not be conveying that clearly enough to my kids. Being present and focused is key.
Christine & Susan:
Focusing on the positive behavior and rewarding that is key to better behavior. This is integrated into ABA training programs. Rewards & token economy, though, must be both implemented cautiously and withdrawn over time. Consider to implement it with a supervisor, family guide or what assistance you may have locally.
From time to time we use sticker rewards for when the boys behave at the dinner table. After 5 stickers they get to play a special game on the DS. First time around it was 2 stickers that got the price, later on we could fade the rewards by only giving every now and then fade the rewards away.
Just a little positive attention can do a great deal :-)
Thanks, Jesper. I'm curious - as a parent, have you gone the route of going through ABA-related training for yourself, or do you fully rely on professionals. I see courses available to parents, but I wonder if they would be worth the time/money investment. There are so MANY books and resources available, I find it hard to pick and choose. Any recommendations in that direction?
Friday, March 11, 2011 at 10:05PM
I haven’t written in a while. I’ve found myself very busy and distracted, mostly a workaholic, as has been my general state for most of the time for years, and so this blog went to the wayside, though never far from my mind. Being a workaholic has its benefits - I was promoted this week - but also has its price. I am now on vacation for a week, and so I feel I have time for this, which I feel is an important part of my world now.
To begin, I want to share a video that explains a condition I’ve experienced at times (as I think many people do) - anxiety disorder: http://www.youtube.com/watch?v=_tNfrTSdeXM Many people witnessed me going through this with full intensity when I began this blog back in January, when I was intensely anxious and unable to sleep for about a week. Sharing my story, as well as meditation and continuing to become more self-aware, has helped me to work past this condition. So MANY people are like me and beginning to share their stories. This is Michael Kimber’s mission, to have people “Come Out” about mental illness. I think it’s wonderful. Please watch this video. I’m now back to sleeping normally and generally in a better place, though I will alwys have more to do to improve myself.
In my last post, I wrote about childhood rages, which are really the most negative side of my experiences with mental health disorders with my son. Tonight, I want to share a more positive side...
My husband gave me a very soft, red blanket for Christmas this year. I rarely get to use it. My son absolutely loves it. Most evenings, he'll wrap himself in it, and then come sit very close beside me on the loveseat in the living room. This is our quiet time together before he goes to bed. Tonight, I played some of my favourite quiet songs on my iPod for him, something I actually haven’t done before because he usually says he hates to sing and wants nothing to do with it. I persist in trying to share music with him, because music has helped me so much.
One song in particular really caught his attention. I first heard this song at a Home and School conference I attended last year. I cried then, as did many others in the room, and I still tear up every time I hear it. It's called "I Wish", by RONNO. You can purchase here, along with another song I love and that I gave as a teacher gift last year: http://www.ronnosong.com/m/products/details.php?product_id=10 A few words from this song... "I wish I could tell you your dreams would come true...", "This alone I can promise you...", and "I will be your friend." It's written as a song from parent to child.
His response? After hearing a few other songs, just a few words into hearing "I Wish", he leaned over very close to me, snuggled right up, looked right up at me (recall that he rarely makes eye contact), and said, "Mom. This is the best night I've ever had. I really love this." ever so softly and with the most gentle tone in his voice. So beautiful. He touched my soul and I had to leave the room and settle my own emotions. These are the moments that make it all worthwhile. He is an intensely loving little boy.
I’ll save my additional comments about this book for a future post, as it’s now getting late, I have 20 pages of notes I've made for myself from reading this book, and I have been advised to make my posts shorter! Perhaps I'll come back here later this week.
Happy March Break!
Reader Comments (2)
Thanks for the link to the Cure Video!
Jesper (yeah, I still follow you)
Great, Jesper. I hope all is well with you!
Saturday, March 12, 2011 at 10:08PM
Here I am, at the end of another typical day. I woke this morning as I always do – with optimism and a vow that today will be different. Today, I will enjoy my time with my children. We will have lots of quality time together, enjoying each other’s company. This is always my intention. At the end of the day, however, I almost always seem to sit back and reflect, and realize that once again this was largely not the case.
As I imagine is true in many homes, my children are often “unmotivated” to do anything I am asking them to do, seemingly unable to provide me with any attention toward getting breakfast, dressed, or to wherever we need to be on time. I hear similar stories from school. Sometimes, the experiences are also marked with intense emotion – outbursts that they simply do not want to do what is asked, and my own frustrated responses. I’m always looking for some way to make such experiences less common in our house.
In the book “Scattered”, by Gabor Maté, the “unmotivated” child is said to likely have Attention Deficit Disorder, or ADD, and a "counterwill" that leads to the automatic "no" events that I experience daily. Interesting in this book is the explanation for how a person may come to have such a condition, driven to distraction, and what can be done about it. I’ll try to briefly give my interpretation here.
In the first few years of life, if a mother had (even unintentionally and unaware) experienced anything leaving her distracted in her interactions with her child, the area of the brain required for attention and emotional regulation would not develop in the “normal” way, and so the child would end up less attentive and more emotional than a “normal” person. In a MRI, this can apparently show as smaller than normal structures in the right prefrontal cortex of the brain.
Of course, if a mother is distracted, the baby would experience a feeling of “detachment” when trying to get the mother’s attention, and experience negative feelings because the mother is not responding as requested. There is no blame with this – it’s beyond the mother’s control. A mother simply cannot be consistently and lovingly attentive when distracted.
I recall hearing in Sociology class in high school... around age five a child's brain will change in a way that he/she will not have explicit memories of things that happened before that time. I'm told that as a toddler I once fell on a heating grate and severely burned my leg, to the extent that my parents were concerned I’d be permanently scarred (though I’m not), but I have no memory whatsoever of that. Dr. Maté explains that, for situations where we experience negative emotions in our early years, what remains are implicit memories of feelings, and apparently these memories can be triggered at times that seem out of context because we’ve lost our explicit memories.
I agree this could pose as an explanation for my children feeling as they do. They could be showing me that I have not been consistently attuned to what they needed most – consistent, loving attention. I recognize that I have issues with attention and emotional regulation, so it makes sense that I would pass this on to my kids, if I choose to do nothing about it.
Regarding emotional regulation, as an example, anyone that has gotten close to me will be able to tell you that I cannot say goodbye and remain in a stable state. It’s very embarrassing for me, so generally I will do everything in my power to avoid saying goodbye to anyone. I always dreaded the end of the school year, when I’d say goodbye to friends for the summer. As I reflect on the assertions in this book, regarding how issues with emotional regulation can develop, I recognize that when I was just one, on Christmas morning, my grandfather suddenly died from a heart attack. While I don’t remember that event explicitly, I imagine that intense emotions surrounded that event, and so I agree that it’s possible that implicit memories of feelings from someone leaving could be triggered whenever someone is saying goodbye to me. As I get older, I’m getting better with this, but it’s still very hard for me. You do not want to be around me when I attend a funeral.
What does a person do with emotional regulation issues? Well, the same thing you would do in any negative situation – find a way to make it seem to go away! Because the pain experienced from the lack of control is so intense, the person with this issue will find ways to avoid negative feelings. Most people with this condition will apparently become “addicts” in some manner… exercise or helping people makes them feel good, so they might become exercise fanatics or intense “people pleasers”; drinking might dull the pain, so they might become alcoholics; working offers distraction, so they might become workaholics. Notice that some of these “addictions” can seem very positive to the outside world… To the person with the addiction though, if you take away their “drug” of choice, “withdrawal” is the result.
It seems to me that with self-awareness the biggest challenge then begins… As a person with this issue myself, Dr. Maté states that I must learn to “self-parent” – to give myself the attention that is needed to allow my brain to develop in this area. There is much advice offered in the book, which I will not list in detail. I recommend that you read the book if you want this information, as I would not do it justice here. Key is to not avoid feelings, but to experience them and grow as a result.
I’ve begun to make changes in my life with Dr. Maté’s advice in mind. In recent weeks, I have changed our morning routine. I no longer rush to get to the bus on time. I often miss the bus, and so just drive my kids directly to school. This allows me to focus more positively on my kids, and so the day generally starts in a more relaxed manner now. I have changed my diet as well – completely cut gluten for a month now, and sugar for the past few weeks – I’ve lost about 9 pounds in the past month and feel gradually more healthy, so this is a positive change for me. I have begun again to practice a bit of meditation, and cut down on my evening computer time, to try to help myself be more relaxed. I intend to restart my exercise routines as well. My personal email is piling up, but I’m trying not to let that get to me! My house is rather messy – that work too is waiting a bit longer (though I feel my basement calling me with intensity this week)! Because I believe that my children need more consistent and loving attention, I am going out much less often during evenings as well. To fight my addiction to work, I now keep my formal work to 40 hours per week and I am also beginning to volunteer less. I’m trying to stay focused on my kids more. It’s a lot of change at once, so most certainly a time of challenge for me, and rather exhausting at times, but I believe my awareness should lead to positive change, given proper time.
As this is March Break, prime time to focus on my kids, this will be my last blog post for a while!
Reader Comments (2)
For now I just need to say, there is not a thing in this world you could tell me that would convince me that you were in attentive to your children as babies. The fact that you breasfed them in itself is more time than many babies get attention from their mothers. The fact that you work from home may have led to some inattentiveness but I don't see how that could be any worse than the rest of us being absent completely. The fact that you are now so attentive on finding a way to help them to be the best of themselves that they can be is testament to the love you have for your children. The biggest thing I've struggled with as a mother is trying not to change who my children are as people, trying to convince them to do it my way," they'll be much happier". OK I have control issues. I try to remind myself now that they are who they were born to be. I recognize that you are having some very real struggles in your home, I wish that I could make that easier for you. I think your focus should be not on what has caused the issue but how to help your family cope and thrive. Because even if there was a trigger of some sort it is past.Or maybe you need to figure this out to find the help? What I do know is that you should not be blaming yourself. Your children are beautiful, smart, loving and exactly who they were meant to be.
I realize I have no answers for you here, and that is what you are seeking. It must be so frustarting.
As far as the not coping well with funerals, I'd say that must be linked to a chomosome we share!
March 13, 2011 | Lynn
Thanks for responding. For me, it's not about blaming anyone - it's about looking for explanations so that I can hopefully find a solution that I believe in. I agree, I have been very good at being "attached" to my kids - breastfeeding and other actions have been a big part of my belief in that approach to parenting. Where I feel I am learning to do better is in the area of "attunement" (as the book describes). You can be physically present (attached) to your children, without being emotionally present (attuned). I reflect that while Tom was a baby I was focused on selling Discovery Toys, while Connor was a baby I was focused on selling Norwex AND Discovery Toys, and then while Morgan was a baby I was active with United Way. I loved doing all those things/carried my babies everywhere with me, thinking I was doing what they needed. I think the reasoning makes sense. With that in mind, I've been looking carefully at what I do and, if an extracurricular activity that I've been engaged in doesn't allow me to be "attuned" most of the time to my kids, I'm generally dropping that activity, at least for now. I'm not dropping every extracurricular activity - that would destroy me - I like people far too much for that! I'm just considering more carefully now before I take on the extras. No parent is perfect - there are always opportunities to become more self-aware and do better. Does that make sense?
Wednesday, April 6, 2011 at 3:46PM
We're continuing to go through many ups and downs in our journey, very much looking forward to rather lengthy assessment discussions with a psychologist as scheduled on Friday/Monday this week. As we wait, I of course continue to look for ideas to help us. Nothing worse than waiting in a negative situation and doing nothing!
From this article, I note:
"Putting an eye patch on the right eye at any point during the negative thoughts instantly slows down left-brain activity, making it impossible for the brain to keep the thoughts going and thus releasing the mind from its obsession. People with obsessive negative thinking-particularly those suffering from depression, chronic anxiety, compulsions/obsessions, or excessive mind chatter-benefit particularly from eye patch therapy to help stop negative habits of the mind."
Could it be that simple? I'll have to try this one on myself!
If you also have experience with this, I'm very interested in knowing about this. Click "Comment" to let me know :-)
Reader Comments (6)
Not sure if it works or not. But a really nice find. If you get a chance to try it, let me know your findings. I know couple of guys who definitely need to try this :-)
I have an eye patch here. I will leave it with Kevin this morning.
April 8, 2011 | mom
Internal chatter is my problem. I don't have an eyepatch so I covered the right lens on my glasses. I started yesterday morning. So far it does seem to reduce both internal chatter and the hightened emotions it stirs which leads to anxiety.
It's difficult to really evaluate because I don't normally wear my glasses so I need to get a patch. However, I am surprised that it appears to be helpful. Mindful meditation has helped in the past but is hard to start meditating when you're wound up - or can't spare 20 minutes to chill out. Patching is quick to apply and seems to calm things down to where only a little meditation technique is needed to keep things from firing up for a while. I didn't believe it would work so quickly or have lasting effects - a couple of hours of clarity from 20-30 minutes of patching.
It's freaky as it doesn't conform to my understanding of brain function - I'd always thought the problem was "right-brain" interference but it seems to be some kind of feedback loop in the "left-brain" functionality or some other effect of the left hemisphere receiving visual stimulus from the right eye and then receiving a possibly delayed and pre-processed signal from the left eye. What isn't clear is why it should affect internal thoughts that are not at all related to incoming visual stimulus. Maybe the input to one's "puzzler" from the excited neurons that trigger internal thoughts shares a path with or feeds into the right eye signals to the left hemisphere so when the left hemisphere turns its attention to the corpus callosum those signals get ignored. Interesting stuff!
I also feel that eye patching helps with clarity of thought. I seem able to choose what I think about which is normally difficult to do. It's early days to know if that is true but I certainly hope it is. They are right when they say it is unsettling. It's not a bad feeling but definitely a strong hmmm.
I'll keep on with the experiment to make sure it's not that I happen to be feeling mellow at the moment! I also intend to try covering the left eye to see what effect that has.
April 8, 2011 | me
The last few nights, I've tried closing my right eye while I go for my 30 minute walk. I'm smiling a LOT more than I had been lately. I can't decide though if it's this change or the blue skies we're finally seeing. Either way, I like the results :-)
After a very mellow weekend, patching wasn't quite enough for work this morning and other stress mitigation behaviours cropped up. However this afternoon went better. The thing I like best is that there is less stress directed at the family. Issues that recently would have gotten me annoyed have been dealt with calmly. Also it is much easier to do the things that need to be done.
By the way, what I've heard is that the brain knows when you're winking so it's not as effective as patching an open eye.
April 11, 2011 | me
Good to know about the winking! I'll have to test with the patch from Mom :-)
Friday, April 8, 2011 at 9:51PM
I'm currently reading a book called "A Mind at a Time", by Mel Levine, M.D. I'm not very far into this one yet... It's tiny text and quite long, and I find the outdoors are calling me more now. However, I am already finding encouraging information... The basis for the book is that the mind is made up of many systems: Attention Control System, Memory System, Language System, Spatial Ordering System, Sequential Ordering System, Motor System, Higher Thinking System, and Social Thinking System. Most people are less developed in some area of their mind... In my case, I'd say it's my Memory System and Social Thinking System that most often fail me. For any system in our mind, there are actions we can take to improve the system. I think this book is going to spell out those actions.
Today was day 1 of 2 scheduled for assessments for our son. What I found interesting was that the tests conducted seemed to be focused on pinpointing dysfunctions that might occur in each system in a mind, separately. We drove for 2 hours to get to the assessment. He was pretty tired by the time we arrived, but VERY excited to get started. He knew she would give him tokens each time he completed a task, and he was able to redeem them for small prizes when he collected 5 or 15 tokens. Throughout the activitities, there were signs of issues with his Attention Control System - lots of standing and fidgeting. The promise of tokens frequently helped him gain a small amount of control over his Attention Control System. He was very pleased to be getting things like gum and quarters throughout the day. I watched from a separate room, through a one-way window and sitting in the dark. Long day for me, but not at all boring!
The morning involved 3 hours of tests. He was asked to read words, complete math problems, read a story and then answer verbally asked questions, spell, read "silly" words (not real words), and look at pictures and answer verbally asked questions. So far, I think good. I was only able to observe, and was not provided any formal indication of results today. Next, he was asked to name words in categories - he struggled here quite a lot - named a few words and went silent for long periods. After that, he was asked to provide a single sentence in various situations - again he struggled, and actually totally shut down for about 20 minutes. I think this indicates he may have a disability in the Language System. Later in the day, I was told that it was obvious that he struggles with writing. After this, he went on to hear words and sentences, and identify related pictures. He looked at a picture and heard a phrase, then had to give a single word to fit both. For example, she's say "not crooked" and show him a picture of a line, and he'd respond "straight". He had to repeat what she said... often not doing so accurately, but changing words like "no one" to "nobody" - again perhaps indicating an issue in the Language System, I think. He seemed okay with looking at pictures and then telling a story - I think his short term Memory System is okay. He provided instructions step-by-step, so the Sequential Ordering System seems okay. He seemed to be able to copy drawings, point at matching pictures, and complete dot-to-dot pictures. By the end of 3 hours, he was very happy to leave for a fast food lunch!
After lunch, he went through another hour of testing, this time I think focused mostly on the Social Thinking System, and he clearly showed issues there. If she made a personal remark about herself, he seemed to ignore her and move on to talking about something else, like details of a computer game. He couldn't explain the difference between a friend and someone you go to school with - they are all friends to him. She also asked him about things like his March Break, and he didn't seem to recall much - perhaps indicating issues with long term Memory System?
Monday will bring another long drive and still more testing... 3 more hours. After this, she will spend an hour starting to write a report, will speak to me for an hour with hopefully some guidance, and then she'll spend another 4.5 hours writing a formal report. Motor System will apparently not be tested... I think his cursive writing is okay (when he chooses to try) and I've seen him play piano, so I'm thinking fine motor skills are okay. I have concerns with gross motor skills though - he gets very upset with most sport activities, so I will be discussing this further. I'm not sure if she's testing the Higher Thinking System or not - I'm thinking this probably depends a great deal on the other systems.
After the long two hour drive back, where he complained most of the way that he was bored... I went for a refreshing Spring walk. It was really quite beautiful out there! I feel new optimism. Perhaps this latest book will offer guidance, even if the psychologist does not... I do think she will have ideas though - offering still more hope here.
Have a good weekend!
Wednesday, April 20, 2011 at 1:42PM
When I last posted, I indicated we would undergo another day of assessment in the morning of April 11th, and then we expected to get results for our son during that afternoon. Well, that didn't happen, exactly... She had concerns that ASD was not right area to focus on, so she wanted to look more in-depth at some other things she was seeing. I was given the choice of skipping that additional assessment and just getting her report right away, or postponing getting results. I decided it was better to be more thorough - to perform additional assessments in the afternoon. Our report would be provided the next day anyway, so I thought. Then... our doctor hurt her back and couldn't report... SO frustrating! Oh well, such is life, I told myself! At least she seems to be understanding him and seems to be forming some ideas, though she wasn't sharing much with us yet... I ended up spending the next week trying very hard to be patient (not all that successful)... Reporting was delayed... until today.
After a VERY long journey, starting between 4 and 6 years ago (depending on how you count) and involving over 20 professionals in the health system, and countless others in the education system (notice how I'm dragging out this story to show you just how LONG it's been - he he)... we finally have answers that could make a signficant, positive difference for our son.
Note as I write this that this is my personal interpretation of what the psychologist told me today. If you're from the school, you will be getting a formal report from her, with much more detail. I expect you will develop your own interpretations and questions, and very likely (hopefully) have your own good ideas for moving forward as well!
Now, as a person that prefers to focus on strengths, and with thoughts that we ALL have our challenge areas that we need to work on, I want to begin there... Our son is a "superior" visual learner - two ranges above average in the area of perceptual or visual reasoning - so he learns best when graphical representation is involved (sort of like Temple Grandin). Similarly, he is "superior" in the area of math reasoning - just one percentile from "gifted" - operating at about Grade 5 level, while he's in Grade 3. His reading comprehension is also "very high average", around Grade 6 level. His visual perception in the area of visual motor integration is also "high average". While we had concerns that perhaps his issues might be motor skill related, she indicated that his motor coordination in general seems to be "average" - there is no issue with him controlling a pencil, and I think also this means he should be able to perform okay in sports, if he can get past some other issues.
Challenges?
He struggles with processing speed. It takes him longer than most kids to get written work done. He will need extra time to think things through, and tasks need to be broken into smaller parts, with deadlines set for each part. Don't ask him to write a speech all at once... ask for the first sentence of the introduction, take a break, ask for a few more sentences, break... and so on. We actually learned this through trial and error recently. He's doing a speech about "Obsidian" at school tomorrow. Looking forward to meeting that goal :-)
His oral language skills are also delayed. Without steps listed out, ideally with pictures, he faces challenges in understanding sequences of spoken instructions. We need to slow down and give him instructions in smaller amounts. He's currently operating at about a Grade 2 level in this area (though he's in Grade 3). With some work, perhaps he'll be able to catch up here.
His skills in the area of written expression are also somewhat delayed, currently at about the mid-Grade 2 level. This is evident when he tries to write something. I can tell you, it's a challenge to get him to sit down and even write a few sentences. He'll need support to get past that.
He "exceeds the cut-off for clinical diagnosis of Autistic Spectrum Disorders" in the areas of communication, socialization and repetitive behaviours as well. She said he most definitely meets the profile for high-functioning austism.
In summary, the ever-important "labels" that will be reported:
* learning disability, especially in the area of writing
* Asperger's Syndrome
* Attention Deficit Hyperactivity Disorder (ADHD)
She asked... Are you surprised? ... Uh, no, I replied. I mean - really? It's what everyone's been saying for years now. All kidding aside though... Through all of this, I have long understood his challenge areas. The detail in her report has given me new insight and ideas to help. She has MANY recommendations, and I think the school will find the ideas very helpful, though also will find (as I'm reflecting) that we're in for a lot of very hard work yet to help him learn and get past his challenge areas.
Some of the recommendations?
A stimulant could help with his focus. Yes, we did try that at one point... now we should perhaps try some alternatives, so he can focus and learn important social skills. This would be temporary, just to help him learn other skills.
Develop a token system for home and school... He likes games. He can get points when he does what's important and lose points when he isn't focusing as needed. When he gets enough points, we can give him a reward - computer time at home. Develop a way to cue him in the classroom when he's about to lose points. Give him ways to earn points back as well. I think this will be a LOT of work to adjust to, but I also think I see the value in trying.
Clean his desk often... He'll need this more than most kids. Schedule time for this... maybe get all kids to clean their desks more often. Assign an organized kid to help him (he didn't like it when Mom did it last time with other kids around).
Use visuals whenever possible... There are many types of graphic organizers that outline steps for writing. Take advantage of them! Sentence starters, fill-in-the-blanks, pictures for cue writing, etc. The school probably has lots of these already, and might even be using them. Use the more!
Scribing... Sometimes it will be better if someone else does the writing for him, to get his ideas down, and then he can focus on formalizing the writing.
Co-writer... This is computer software that can learn as a child uses the software, and can predict how a sentence might be finished. It can help him learn to write. A computer will be a good tool for him.
Short work periods/lots of breaks... Again, break down tasks into smaller parts, shorter sequences.
Focus on social skills... After he learns to get his attention focused, he will benefit from more focused talk about core social skills, initially one-to-one and then in small groups.
Printing basics... He needs to go back and spend focused time learning to print "properly"... letters should be formed top to bottom, not bottom to top, and spaced properly. He can print now, but he's doing it the "hard way".
Social stories... Use social stories to pre-describe situations. For example, before gym, explain what a good gym class would typically involve, and tell him what he can do when he doesn't like what's going on.
As I've said on many occasions... It really does take a village to raise a child properly. I could not do all of this to the level he needs on my own. We have been VERY fortunate in our journey, in that our son has had excellent, patient teachers and support. Imagine where we'd be if they weren't patient! Shudder!! People have gone above and beyond their job descriptions (what they are paid for), to help ensure that our son did not fall further behind in school than necessary, given the limited resources available. I am forever grateful for everyone's support! Now that we have some "labels", I do hope the school system will be able to assign proper support to help with the specifically identified challanges, so that his teachers can also receive support and, therefore, he will achieve his full potential. Again, there's that virtue of patience that I need to call on! It will be at least September before this happens... I'm being optimistic here!
Reader Comments (3)
Thank you for sharing the journey - should be so helpful for others on the trip.
I know the journey, and the struggles along the way. I hope the suggestions will be well received by the school. Always remember two things: you know your child best and it will always be worth the effort you have to put in to see that your child meets their full potential.
I am always here if you need someone to lend an ear.
Cynthia
Thanks, Cynthia. The "school" has always been very good to my family. We've discussed together and they've taken many of my own personal suggestions to heart on many occasions. My purpose in all of this is to get additional support assigned. Without a label for the issues observed, CCRSB has been unwilling to assign an EA or provide any official additional support, so he's been left with less support than he has needed for quite a long time. As I imagine you are quite familiar with, a teacher alone in a classroom cannot possibly support him, while also meeting the needs of the other kids in the class. We've been fortunate until now that an EA has been in the room, assigned to other children, but willing to help a bit with him as well. The issue is that he needs much more support than that EA can provide - he needs someone to be more dedicated to him, to coach and help him for a while, so he can learn to absorb and understand the instructions as easily as most kids do, and also work separately on some areas that most other kids have already grasped in his grade. It's challenging, because in other areas he is "ahead" in the grade. Given about 1 in 6 kids are now described as having learning disabilities, it honestly baffles me that it is so hard to get support in the school system. It rather annoys me that we had to put him through so much to get a label assigned to all the areas we know he has difficulties with, when everyone in contact with him already knows he needs additional support with writing and to develop social skills. If a kid clearly needs support, even if it cannot be readily labeled as a specific disorder, I simply do not understand why the school system doesn't take that as seriously as when a kid finally gets a label. It's quite possible that he has some other condition that just looks like Asperger's... allergies not fully understood, seizures in the frontal lobe, etc... I've read many theories about what might be the "cause" of a profile like Asperger's... Science in this area is so vague that I think the label has little meaning, other than a check mark on the school board's piece of paper to say "take me seriously". C'est la vie - I have my check mark now and I'm anxious to see if it really helps. I sure hope it does :-) Thanks for "lending an ear" here. I'm not much of a talker ;-)
Thursday, May 5, 2011 at 8:11PM
Every year, at about this time, the company I work for requires managers to review and provide formal feedback about employee performance. Many university students are also receiving report cards, and in just a few months the public school system will also issue report cards. I'm reading "The Way I See It", by Temple Grandin, a book full of short articles regarding various topics related to Autistic Spectrum Disorders. About half way into the book, the book includes several articles about how autistic people think differently... I think this is good information to reflect upon at this time of year.
As a kid, I don't think I learned a great deal from report cards. Typically, the report card would give you a mark in each individual subject, but did little to advise you regarding how you could get a higher grade. Your mark was good, or it wasn't, and it was largely up to you to figure out how to get the mark higher, if you decided that was important to you.
As an adult entering the "real" world though, I found I could learn a lot from performance reviews. I think I've been fortunate - I've had managers that also had good "people skills". My managers knew how to provide "constructive criticism" - to provide feedback in a way that did not put me down, but actually guided me in a way that made me feel at least a little good about myself, while guiding me to improve. (I am now in a position where I am learning to do the same. Hope I do as well!)
So, what did I learn from work performance reviews? I already mentioned that once I received feedback stating I needed to learn to speak more. I was "non-verbal" in meetings. This is interesting, since being non-verbal is a sign of being autistic... I was never completely non-verbal, but I certainly did need to learn to be verbal in some situations. This is forever a skill I need to work on.
Another trait of autism I've read about struck me even more tonight...
Temple Grandin writes: "People on the spectrum think differently than non-autistic or "typical" people. They are "bottom-up" or "specific-to-general" thinkers."
I had to stop and really think about this. When I learn a concept, how do I really learn it? Upon reflection, I now realize, I always think about details first, then (if I choose to try to) I can generalize. Feedback I received from managers? Usually went something like this: "Christine, You have excellent skills in attention to detail. I can tell that you really know your subjects well. However, I would really appreciate if you'd learn to summarize what you write." Doesn't that make sense! A "typical" manager would look at things I write, with so MUCH detail, and long for less detail -- probably because they learn general-to-specific instead... They like to get a general idea, then add details, while I tend to focus on details a lot.
Now, I'm putting that into context with my children. It's been very hard to teach my children not to run across the street. In fact, when they were small, we opted to build a fence in our backyard to essentially corral them, because we just couldn't seem to teach them not to bolt for the highway! I went into panic attacks at times, after our son started school, because he'd keep trying to leave the school grounds, where there was no fence. Fortunately, through lots of time and experience, he's outgrown that behaviour at age 8, but not without a lot of pulling our hair out first! Temple explains in her book... Telling a child on the spectrum that it's not safe to run across the street just will not be enough. Singing a song about what you should do when you get to a street is also not enough. You have to give the austistic child "details", and lots of them! You need to help them "visualize" what a street actually looks like. Showing them one street is not enough - they need to actually see lots of different streets, so they can visualize streets in many forms, and then generalize. Telling them it's not safe to enter traffic is not enough. You have to help them visualize what could happen if they went into the street. Temple says she didn't learn until she saw an animal squished on the road!
Then, just after reading this, it was time for us to go for a drive. Here's a conversation I actually had with my son tonight (maybe not exactly worded as it went, but pretty close), which I think illustrates quite well that he needs "details" to understand:
"Time to buckle up!" I said. No action.
"It's not safe to drive unless you're buckled," I reminded him. No action.
"It's also illegal for me to drive if you're not buckled," I added. Still, no action.
"If you don't buckle up, you could get hurt," I tried further to coax. (I'm starting to lose patience here, taking LOTS of breaths and trying to keep calm, as I've been advised I need to do in such situations. I don't want to threaten taking away the computer, yet again, but I know that's often what I need to do to get action...) Finally, he speaks...
"Oh, Mom? How is that?", he asks. He want to know how he'd get hurt. (I think to myself. Really? You don't know how you could get hurt if you don't buckle up? I decide that he might be "playing me", but experience says maybe not... I humour him at least.)
"What do you think could happen?", I ask.
"I don't know.", he says.
"Well, you could get thrown through the window if I drive and then suddenly have to stop. What do you think that would be like?" He gives me a big shoulder shrug. He really doesn't seem to care about it. "You could die," I add... Still, no response. He doesn't seem to be able to visualize what dying would mean to him... I decide that he needs to be able to visualize what it would be like to be dead. A bit exasperated, where do I end up?
"You wouldn't be able to play computer games ever again", I say.... IMMEDIATE ACTION!
Now, he had something he could visualize AND that he cares about.
In summary, if I want to teach him something, I need to give him lots of details, to help him visualize what that something looks like. I further think that, when he can't visualize, that's when anxiety kicks in.
So much to learn. Have a good night!
Saturday, May 21, 2011 at 1:54AM
Warning. This is by no means a cheerful post, but I feel it must be "said"... I want my story heard.
It's 2 am in the morning as I begin to write this post. Simply put, I feel broken. I can't sleep. In the past few days, actually, I haven't slept more than a few hours each night. I'm very upset and unfocused. This is not just affecting me, but my whole family. My daughter (age 6) has had a cold for about a week now. I can hear her alternating in her bed between coughing and crying. While I try to hide it from her, she can sense that I am upset and she is experiencing nightmares as a result. My oldest son (age 10), has been exhibiting more and more behaviour issues in school. His teacher tells me that he's unfocused and disorganized. He is also affected. What is going on?!
If you've been following my blog, you know that I have been fighting very hard, for years now, to get help for my middle son (age 8). Since about age 2, he's seen countless professionals, as we've tried to help him with serious behaviour issues. Throughout this process, the professionals available in the school system have told me, over and over, you must get him a diagnosis, if you are going to get more support from the school system and, by the way, we fully agree that he needs that support. We are sorry that we cannot help you more. They often say this with tears in their eyes, it is SO frustrating!
I've watched my son go through so much pain. He cries suddenly and uncontrollably, often seemingly out of nowhere. He throws himself onto the floor in a screaming rage. He has issues with sitting still, makes unusual noises, and on and on. Again, if you've read my blog or know me (as most reading this do), you are quite familiar with his behaviours. We have been unable to find the trigger for his behaviours. He is NOT the only kid like this. I'm told by many who have been in the school system for longer than I have, that the number of kids like my son has been increasing dramatically. It may be as high as 10% of kids now! Typically, you'll find 1-3 kids like my son in a standard classroom.
Anyway, as I mentioned in another recent post, we finally have a diagnosis for our 8 year old son. He has Autistic Spectrum Disorder and, as many professionals before our psychologist have also said, he needs support, and lots of it, if he is going to be a successful member of our society. The literature related to his diagnosed condition says that, without this needed support, he's at very high risk of being depressed, to the point of being suicidal and perhaps violent, and a burden on society.
What I have not yet mentioned in my blog in any detail is another area I have explored to try to help him. Despite the fact that I feel it is completely unnatural and I know it is very high risk of having bad results, I agreed to try medicating my son. When you watch your child go through this, quite frankly, you will try almost anything. In Primary, we tried a double blind trial with Dexedrine. In one week, he had no medication, one week a very low dose, and then another week a bit higher dose. We didn't know which week was which, but we noticed in two of the weeks that he was very over-stimulated and could not sleep. We later learned those were the weeks with Dexedrine, so we stopped that approach. We explored other things... In August of this year, now Grade 3, we felt things were escalating sufficiently that we had to try again. He was prescribed an anti-depressant, Celexa, because he was crying so often and we believed he had depression. This reduced his anxiety somewhat, but did not really address his other behaviour issues. Worse than that, in March, he began telling us that he wanted to die, he would build a house of Lego by adding blocks each time he felt bad, and when it was built he would decide if that was when he would "do suicide". After all we'd tried, I felt even more miserable.
As our journey with professionals converged on this moment, our psychologist (not an expert/able to provide us with a prescription as our psychiatrist was doing), told us that many kids with ADHD will benefit from a stimulant medication. He's complex though, she said, more of a puzzle... We should discuss this again with our psychiatrist/consider other options perhaps as well. I did LOTS of reading on this subject. There are so MANY medication options, with so many warnings about risks! Asperger's means that a stimulant may not entirely help on its own, but she felt we should try. He might need a combination of medications... an anti-depressant and a stimulant. Given his negative thoughts, we elected to wean him off Celexa (cleary it wasn't the "right" medication, but also you're not supposed to just stop giving him this/he will experience bad withdrawal effects). We decided to try something else. Biochemistry is complicated and you have to try various options, until you find the right medication, IF you are lucky enough to find one that can help... There is no test to find out which chemical in the brain (if any) is in need of assistance. He is now taking Adderall, for a few days. You're supposed to be able to see progress in the first few days. He seems every bit as easily frustrated as he was, though in these first few days I think he's crying a bit less and actually has asked me to give him worksheets to work on. He's always hated writing (has a disability in this area), so this feels like perhaps progress.
Now, on Wednesday, the psychologist presented her assessment to the school. In the meeting, because her diagnosis involved Autistic Spectrum Disorder, we had the Autism Support person for our school board. That's right, you are reading correctly (assuming my facts are straight, which I am in process of confirming)! ONE person seems to be assigned to support ALL kids with ASD in our school system. The kicker? She's assigned only 50% of the week to this role. The other 50% of the week, she is a Speech Language Pathologist... though next year she'll be assigned 75% to ASD.... Also in this meeting was the Resource Teacher for our school. She is assigned to provide "additional resource support" to ANY kid in the school of about 130 kids... one person, assigned to help with extra support in academic subjects (reading and math), as well as any social programming support necessary. Did I mention she's not trained to provide social skills programming for these kids (most teachers are not trained), and there are other kids clearly identified as in need in this area in the school (though generally undiagnosed like my son, and so cannot be formally identified and more fully supported)! The ASD support person indicated she could provide teachers with training in this area, but it would not be immediate and would take some time... I could attend this training as well, I think she said probably in October. The classroom teacher was also there. She has a room of about 25 kids, and she cannot focus on the class properly when left alone with those kids, without sending my son out of the room for "extra support"... support available only very part-time because there is only ONE resource teacher and she already has a pretty high workload. There is an Education Assistant in that room this year, assigned to another kid (in Grade 4) that would not be in his class next year. This year, she is also a help. He's in Grade 3, in a multi-age class, and the child with EA support in the room now will move to a new room for Grade 5 next year, leaving him in Grade 4 without the side-effect/very limited support he's been lucky to get. Anyway, we go on to discuss. I learn that there is a system for assignment of Educational Assistants to classrooms... level 1 kids are those that need the most support (like diaper changes), level 2 kids are not high-functioning (like fully non-verbal or austistic in the full spectrum of traits), and then there are level 3 kids... Not counting my son, there are 3 other kids in the school that are actually diagnosed as level 3 kids (and a few others that perhaps also should be diagnosed in order to get support). There are currently 3 educational assistants funded to support classroom teachers in the school (one of them only part-time)... They are stretched to support the classroom teachers, to do things like calm down kids undiagnosed like my son, as well as support the 3 kids actually diagnosed, but they are not trained to provide the social programming either.
We already heard earlier this year that funding for education was not going to increase this year - it would be decreasing in many areas... This all wraps up to one big point...
Unless something is done to change things, the government funding provided to my son's school will not allow for proper support for my son, or for supporting several other kids properly in the school. Worse, this story repeats in every school in Nova Scotia (and globally). I've had so MANY people write to me to tell me that they suspect their kid has ASD, and ask if I felt they should go through the process to get a diagnosis. While it's huge work, I have always advised yes, because without it I've been told there would be no support. I've had people advise me that I need to petition the government to provide additional funding if I'm going to even get an EA to support my son. This funding wouldn't even help with provision of social skills training necessary. Still more funding will be necessary if he's going to get the sort of social programming in school that he needs... Without action, my son and others like him (about 10% of the school) will not get the support they need, and will be at high risk of not succeeding, of wanting to kill themselves, or being a burden.
THIS is why I cannot sleep. I have meetings scheduled to discuss with people to check my facts and regarding what I should do. This blog is not read by enough people - and certainly not by those that need to know my story. I want to make my story heard. I want others in similar situations to also make their stories heard. We need the school system to change to support our kids. We all know what happens when kids in need do not get support they need. We see it happening now... increased violence, increased drug use, etc. We cannot afford to keep quiet about this. This is a key area where we need full government support. We need our school system to change, to provide our kids with social skills training and support.
What would you do now? Use the "comment" button to give me your thoughts. If you are in my local community and want to work with me on my petition to government, I encourage you to also think about writing to government to request support for provision of social skills programming/lessons in our schools, to give our teachers the support they need to be able to teach our kids. Our teachers need training in provision of programming to teach social skills.
I will certainly appreciate any and all efforts!
...I feel a wee bit better after spending this hour writing this. It's 3 am. My daughter is not coughing/has drifted off to sleep. Now, I think I can get some sleep.
Monday, May 23, 2011 at 4:48PM
After my post early on Saturday morning, I pretty much kicked my family out of the house. I needed some space and quiet time, and my mother-in-law had invited us for lunch :-) I spent the entire day just sitting around by myself, reflecting on all the events of the past while. When they came back for supper, I managed to keep my composure, mostly, but I was still extremely tense. As luck would have it though, a friend asked me to take care of her dogs for the night... Rather than spend the night frustrated and cranky at home, not sleeping again, I up and left. I knew that if I didn't then things would not turn out well, and my husband was in a much better state than I was. I put myself to bed and, 12 hours later, it was like I was a whole new person. I can't thank her enough for that time. I went back home and I'm certain my family can tell that I needed that sleep and time away. We've had a wonderful Sunday and Monday here, full of generally positive energy (though there are still the spells of frustration from our 8 year old son).
Every parent hears it... Children need structure. Children need chores. Children need fresh air and exercise. Well, in our house, we've tried for years to assign chores and get our kids outside more. If you do XYZ, we'll give you allowance at the end of the week. Our children just didn't respond to that. Simply put, they very rarely earned any allowance. Very frustrating, because I know full well that I need that exercise or I'm cranky. Yes, they too could benefit from more exercise, but how do I get them to do it? Playing with them helps, but I cannot spend what seems to be the 3-4 hours per day they need exercising. I have my own chores ;-)
In all the advice from professionals that we've received, we've heard it now repeated... Children with ADHD often benefit from introduction of a "token system". I was a little uncertain about this. It seemed overwhelming... I mean, what activities should you put on the system? What should each activity be worth? Do I really have to "reward" every time the kids do an activity? I was a bit frozen, thinking about all the what ifs and trying to decide how to approach this. I managed to find a few samples in books and on the internet, but they didn't fit my kids. For example, if they earned enough tokens then they'd get to ride their bikes... my kids don't like to ride their bikes!
After a good night's sleep though, my head cleared and I was able to focus on this. I started small, but in the past 24 hours the system has evolved very quickly. Here's what I have right now:
We purchased glass beads: white = 5 tokens, green = 10 tokens, blue = 25 tokens.
The kids seem to really be enjoying this. Their activity levels are WAY up... They were outside ALL day today, spent a long time seeming to enjoy helping me with the garden and also playing hockey, basketball, on swings, and various other actitivities. Intermittently, they even took turns running on the treadmill, just to get extra tokens. Yes, they are cashing them in quickly, going back to the computer a lot, and even cashed in to get a small treat at the convenience store. In the balance, I do like what I see though. There's been very little expression of frustration today! I wonder how long the excitement will last?!
If anyone out there has experience with such a system and wishes to provide advice, use the "comment" link :-)
Reader Comments (8)
I hear your frustration! We have used varying token systems with our 2 boys who are on the spectrum and have had varying success. The key is not to be too static. The motivators will change, so when you see their enthusiasm waning try adding a special bonus for the week- a reward not usually offered, to draw them back in. I think of these games on facebook- they are very good at today only bonuses or needing certain things to get to different levels. My guys are old enough now that they will negotiate new rewards or what gets them 'points' I let them be involved and it helps their motivation. You also have to be very consistent (another word |I am sure you have heard a bit) so the kids know the rules do not vary.
I have also used bristol board shaped like a reward they are saving for. Example: my oldest used to like having birthday parties when there were no birthdays. So when he participated in his required activities he would get candles to put on the cake. When he had all the candles on he would receive his reward (he was VERY visual)
Please be patient, the activities you choose may need to be altered, maybe they never unpack their schoolbags but do use the treadmill. Make a double bonus week for backpacks to get them going. Don't beat yourself up if the rewards aren't used as you hoped or their chores aren't imporving in every area. You are very creative- so find a way to make it work.
All of this is very tiring. I do spend a lot of time with my boys at the gym or playing catch or shooting on the net but we all need our exercise, and yes my other chores suffer as a result but I only have one chance to get these guys on track. I try to put in as much as I can.
I too get a little over-cooked some days. My guys are not as understanding if I need time to myself and some days I wonder if I will actually make it to the end of this road with my sanity intact.
I know that the effort you are putting in now will be so rewarding for you and for your beautiful kids. Even without the interventions you are adding now, you have raised smart healthy and very fun children whom I enjoy very much!
Dear Christine
All the very best of wind from this side of the pond regarding the issues you face. Sometimes.. no ofte ... it seems we need to be our own socail worker, knowing the law, the interpretations and how to apply. Government wants to cut or undersupply according to the initention of the laws. I wonder how some social workers can face themselfes.
[rant off]
The youngest had a cool Star Wars LEGO set for birthday, and the oldest wanted one as well. So we started a small enforcing system here: lay the table 1kr, sorting laundry 1kr / minute, ...
It's a matter of creditting the behaviors you want, and disregard the behaviors you don't want. - not easy though
Thanks, Cynthia and Jesper. Correct - not easy and very tiring. I'm finding the hardest part with this system involves remembering to give the tokens in a timely manner... I suppose I need to shorten the list/simplify. On the plus side, the kids now seem to be able make their beds more consistently and neatly than I do myself, but don't tell them I said that ;-)
I so admire how you can be so open, within such a public format!
The courage you are showing speaks volumes as to the commitment you have made to be the best mum you can be for your children!
The love you have for them motivates you to go to any lengths to find the help you and they need! Grace will reward you with the knowledge and support that is required.
I applaud you for knowing your personal needs and stepping back taking time for yourself. Being a fulltime Mum, and working from your home makes it difficult to keep clear boundaries. I remember the frustrations of working from home for 5 years when I had three small children. 1980-85
Sounds like you are doing so much outside the home also so that adds such a further demension to "the pulls" for your time. Keeping a good balance is so important to keep my serenity. For years I was involved with everything my three children were involved with and a few things they weren't and it took a toll on me. I finally realized that I didn't have to do everything....that was an eye opener for me.... for sure. Things did get done...not always as I thought they should but the detachment I learned allowed others to find their way of doing things.
Hang in there Motherhood is worth every second of it in the long run.
I do know the heart ache of watching your child struggle and it isn't easy. With the help of you; their Dad, all their family, all the other supports for you and them, you will see the rainbow at the end of each struggle.
My Grandson is 14 and in grade 7 with an I.E.P. without ever having an individual E.A. and for likely the first time having a great year. He too has benefited by the shared E.A. in his classrooms over the years. It is frustraing no two ways about it but hang tight to your hope and trust that grace will be there for each child if we walk with them, surrounding them with the love so they know that they are enough.....just as they are!
Hugs from here to there
Christine, I think what you are doing is great. You have clearly stated for your kids what your expectations are and how they will be reinforced/rewarded. It is all visual so you don't need to verbally prompt which always encourages the possibility of more independence. I did this in my Learning Center at school, called it the Penny Pot program, kids got pennies for anything "good" (work and deeds) that they could spend once a week in my store. It was amazing what they did for the penny! Your kids are doing amazing things for glass beads! A lot of it is the immediate recognition of something well done and the lack of you having to focus on what was not done! Carry around a pocket full of glass beads! From my experience you may have to change the reinforcer as time goes on, and it may have to be different for each child as it must be someting they are personally going to work for. Good luck!
Blogs are so informative where we get lots of information on any topic. Nice job keep it up!! fjyjiu fjyjiu - Chaquetas Hombre Belstaff.
Blogs are so informative where we get lots of information on any topic. Nice job keep it up!! obkhmm obkhmm - Belstaff Coats Outlets.
your artical looks like food taste so delicious, much information is very useful to me. thanks obhwfe obhwfe - supra footwear.
Tuesday, May 31, 2011 at 9:53PM
Here is a letter that I just emailed tonight...
To: 'charlieparkermla@ns.aliantzinc.ca'
Cc: 'peter.mackay@parl.gc.ca'; 'Education Minister'; 'premier@gov.ns.ca'
Dear Mr. Charlie Parker,
Re: Education Budget for 2011-2012
I'd really appreciate your help with this.
My son, Connor, is 8 years old and in Grade 3. In May, he was diagnosed with Asperger’s Syndrome, ADHD, and a learning disability in the area of writing. He requires resource support that so far he has not been able to sufficiently receive in school, yet I have been informed that the Nova Scotia government will very likely be cutting funding for special needs support in the coming school year.
Over the past 6 years, knowing Connor has issues in need of support, I have consulted over 20 professionals (family physicians, psychologists, psychiatrists, neurologist, speech-language pathologist, autism specialists, therapists, and more!) and completed countless questionnaires and other documents to try to get my son’s diagnosis. It has been a VERY time consuming, exhausting, and expensive process, to finally receive a diagnosis for Connor in May. We persisted in this process because we were under impression this would lead to special needs support for Connor in school.
All involved with Connor know very clearly that he is very strong academically (math and reading), but that his attention control and social skills are very poor. Left unassisted by an adult, Connor cannot sit still, gets very easily frustrated with most assignments, and often ends up crying or hiding in a corner. This especially happens with tasks involving writing or group interactions. We’re told that, with support, this could all be improved for Connor!
Until now, we have been fortunate that another child requiring support happened to be in Connor’s class. In the coming year, Connor will move to Grade 4 in the 3-4 classroom and she will move to Grade 5 in a separate classroom. The extra support that has been present in the classroom will no longer be there, unless something is done to assign additional support personnel to the school. Several professionals have advised me that Connor needs full-time support in the coming year, to help him learn attention control and other social skills. As the classroom teacher is not currently trained to provide this additional support, along with teaching the standard academic curriculum to the other kids in the classroom, additional support seems to be required if Connor is to achieve positive educational outcomes. In short, we need an EA to be assigned to Connor’s classroom.
I do recognize that our government has limited funds to work with. I have also read Mr. Ben Levine’s report, where he recommends that additional special needs support and training be provided for classroom teachers, and then EA support could be reduced. I hope that you will take my story into account and ensure that special needs support is not decreased, but in fact is increased, in this year’s budget for Scotsburn Elementary School.
I look forward to hearing from you soon and appreciate any help you can provide.
Sincerely,
Christine MacKenzie
c.c. Hon. Peter Gordon MacKay, Conservative MP for Central Nova
Hon. Ramona Jennex, Minister of Education
Hon. Rosalind Penfound, Deputy Minister of Education
Hon. Darrell Dexter, Premier of Nova Scotia
If you also have a child in public school in Nova Scotia, please consider sending your own letter to express concerns about the potential (and apparently very likely) reduction of special needs support in schools. I have had several people tell me that it is now estimated that between 10 and 15% of kids in school have special needs, though many are undiagnosed and not receiving support. Our teachers and principals are stretched to their limits! Even if you do not have a formally diagnosed special needs child, consider that you would be impacted by lack of support for special needs children. These children are our future and, without our help, they will not become the positive people they can be in our communities, and we will all be left to deal with the consequences.
Thank you for any and all support!
Update on Friday, June 3, 2011 at 6:16AM by Christine
I have received my first response...
Charlie is out of town this week, but my email has been forwarded to him and Hugh Miller in his office has been asked to start to see what help may be out there for Connor.
When they have some answers (or need to get additional information), they will be emailing or calling me.
This mentorship invites us to use the virtue of unity to harmonize our energies, time, talents and opportunities to spread The Virtues Project™ to others. It encourages us to honor our spirits through music, art, poetry and dance. This professional development conference is for facilitators and others who have attended Virtues Project Intensives.
As I practice my use of the virtues of assertiveness, caring, patience, purposefulness, and trustworthiness, I am having some fun with harmony and unity!
Reader Comments (1)
That's a start - at least you know they read it:-)
June 3, 2011 | Mom
Saturday, June 4, 2011 at 9:53PM
I am currently attending the East Coast Mentorship sponsored by Virtues Connection Nova Scotia - Harmony in Unity, in Halifax, Nova Scotia. Along with 56 delegates attending, representing six countries, I have had opportunity to spend a great deal of time on personal reflection. I have heard the very personal stories of many courageous and generous people, and this is an experience for which I will be forever grateful and will surely never forget. Many of these people have begun reading my blog, and have been getting to know my mind and soul in a very personal way as well, and so I submit this journal entry with my newest friends in mind.
If you've been following my blog all along, then you recognize that I have identified myself as someone that could be described as fitting the definition of a person with "Autistic Spectrum Disorders". I reflect now that in my childhood I was signficantly non-verbal, compared to many of my peers, and this is a trait often associated with people with ASDs. I was the child that was labeled as "shy", and I think for a very long time I identified with that label, and so kept very much to myself. I had a few friends, but even when I was with those friends I tended to say very little. I was not comfortable with looking people in the eyes, not terribly good at small talk, and never really spent much time hugging anyone, other than my immediate family.
I was told today that every single day has 20,000 moments. These moments can be positive or negative - we need both to be productive. Each of these moments have potential to be teachable moments.
Tonight, I had opportunity to visit for just 10 minutes, for the first time in a few years, with a woman I consider to be one of my best friends. We have somewhat gone our separate ways in recent years, but I feel I'm changing - going through my mid-life crisis, as they say :-) - and I felt drawn to re-connect with her. Remember, I barely spoke to anyone, even her, in our school years. I imagine she remembers me as a very quiet person, always quite uncomfortable with social interactions, though I most certainly enjoyed her company. When I visited her house, I mostly just observed her. I'm not sure I had ever hugged her before, in all the years I've known her. If I did, I'm sure it was brief and awkward. During this time with her tonight, I experienced something that demonstrates just how much I'm changing. In the very brief time I was with her this evening, inside just 10 minutes, I hugged her four times! This woman embodies the virtues of grace and courage at this time, and I felt significant gratitude this evening in her presence, not just for our moments together, but for all of the thousands of moments this weekend.
That is the power of the virtues in action! I can't wait to get home and see what I do with this!
Reader Comments (7)
I would like to honour you for your courage in opening up to new experiences, your patience and steadfastness with me in last night's 'journey'. I look forward with enthusiasm to hear about
'what you are going to do with this' and hope to share 'what I also
can do with it' on returning to my current home. lots of love, Sandy
Christine, I too would like to honour you for your courage and also your honesty. You show such growth and loving awareness for the person you are becoming and you show such joyful enthusiasm for what each day will bring. I too look forward to hearing and sharing these experiences with you. :)
BIg Love, Carmie
Christine, wow! The power of the virtues in action is truly awesome and life changing. Thank-you for sharing your beautiful story. It takes such wisdom and discernment to achieve the level self-awareness that you describe so eloquently. I honour you for your honesty and mindfulness...
"20 000 times a day!"
Denise!
Hi Christine,
Having met you this weekend for the first time(and not the last) I was aware of your purposefulness and gentleness. I can't thank you enough for your contribution in the creation of a masterpiece, a peice of my heart has opened up this weekend!!
With Gratitude,
XO Joanie
Hi Christine:
Your courage and openness are so evident. I want to acknowledge you for sharing your personal feelings with us - I feel trusted and loved. Your virtues and the many others we witnessed and experienced during those wonderful, awe inspiring days are what help build and sustain Unity. I look forward to many more moments out of the daily 20,000 in the days to come, to continue to share and grow and be sustained through each others virtues.
Those are super cute. I like you on Facebook. flxhqc flxhqc - tenis supra.
i come here first time. Thank you for sharing your admin would get ready a severely beneficial write-up I congratulate.s I very agree with your views from here. tfzouc tfzouc - moncler jacket doudoune.
Friday, June 10, 2011 at 10:16PM
After 4 days away from my family, I arrived home on Sunday night at about 11 pm. The kids were all tucked in bed, so I had to wait until morning to see them. Oh, the anticipation of it all! I went off to bed and found I basically couldn't sleep. So many positive and heart-warming things to remember from the weekend! I crawled out of bed at about 5:30 am and heard Connor stirring, so I went into his room to give him a hug. "Oh, Mom, you're home?!" He jumped out of bed, pretty excited, and headed downstairs. "I'm really glad to have you home, Mom."
I decided it was still too early to wake Morgan, so I headed downstairs to start making breakfast. As I did this, I informed Connor that I had some things on my computer to share with him from the weekend, but I said I'd like to wait until the rest of the family was out of bed. I asked him if he knew where I was, and he just shrugged his shoulders as he often does, as if to say "Nope, and I don't know if I care to know." I told him anyway ;-) I was at a conference where people from around the world were talking about ways to help people feel good about themselves and each other, to work together in harmony. Would you like to know more? He shrugged again, so I asked him if he knew what virtues are. "They are something good," he said. I informed him that yes, that is true - and I added that they are something good in everyone. "Even me?" he asked. "Yes, of course," I told him. I could see he was getting a bit more interested now. I mentioned "kindness" and "honesty" as some of his virtues, then I let it be for a while, knowing that too much talk often upsets him.
Morgan came along and I hugged her and basically had the same conversation with her. "Friendliness" is a virtue, too," she informed me. (I guess she has been listening to the virtues talk around her for the past few years.)
Finally, Tom came downstairs. Note that so far the mood is very upbeat. Everyone seemed to be very happy to see me. Tom was as well, though not too pleased to be hauled out of bed "so early" - He's proud to be a "pre-teen" and feels that it's important that they sleep in ;-)
I started my brief presentation by sharing the song that was written for our conference. "That's a good song," Tom responded. The song is all about "Harmony in Unity", of course! Still, things were pretty positive in the house, but now Connor started to show some anxiety. This song seemed to have stirred something in him a bit, and it seemed he wasn't sure what to do with this new feeling, which I think was a feeling of wonder perhaps? He was rather squirmy and jumping around the kitchen, making noises as he sometimes does. I decided to move on, to feed everyone breakfast and give him a bit of a break.
As the kids were eating, and Connor had left the room, I decided to share with them what happened in downtown Halifax on Friday night. You can click here to see for yourself: http://www.youtube.com/watch?v=pDAZFJ2MubM (It's a bit hard to see... At the end of this video, each of I think 120 dancers is holding up a sign with either a virtue or a flag for a country somewhere in the world. Virtues in action at its best!)
About 30 seconds into this, I realized I'd triggered a change in Connor. Suddenly, he was very frustrated, and he let me know it. "Quit talking the virtues, Mom!" and he stomped out of the room again. Tom and Morgan enjoyed the video. Following this, it was very difficult to get Connor dressed and off to school. As we headed out the door, Connor continued to express his distaste for it all. He seemed to think that this "new thing" was just awful. "This is going to ruin my life," he said... (This is a response we've come to accept as part of Connor, whenever there is a "change" in his world. As is true generally for many people with ASDs, he does not easily accept change.)
After I get the kids to school, I easily move on with my day. It's pretty hard not to feel good when people are emailing you frequently to send you virtues acknowledgements, after all! I handled about 400 email messages on Monday.
After school, I realized that something positive did actually happen that morning. Connor told me about something he had worked hard on in school, and so I informed him that he really used a lot of perseverance to get that done. "Perseverance. That's a virtue, isn't it, Mom!" and he walked away with a huge smile on his face.
... Message: Even when it seems it might be too much of a good thing, it's very hard to tell if it is or is not!
I continued to spend the next 24 hours or so walking around "feeling like a 12 year old" and generally enjoyed myself. It was pretty empowering, as I received so many messages of encouragement from the conference attendees.
Still, I think sometimes the universe likes to tell me that there can be too much of a good thing... Reality needed to set back in at some point as well... My poor husband came home on Monday night, "sick as a dog" with the flu the kids had shared with him while I was away!
Wednesday was also a big day for us. This was the day we needed to re-visit the psychiatrist. I consulted various people involved with Connor in the past few weeks, and general consensus seemed to be that it was hard to say that there was any particularly big change with him, to indicate that the medication was having a positive impact. After all, Connor and the rest of the family had had the flu (except me - yay!). He still seemed to get easily and excessively frustrated... Still, we needed to decide if we would continue. After sharing this with our psychiatrist, he said that if the medication had been worthwhile then we would certainly know, so he felt we should stop, and perhaps consider something else. Until now, Connor seemed pretty pleased to be trying to find a way to make school easier for himself - he actually seemed excited to take that pill each morning! As Connor was hearing us talk though, he let out... "You know, Mom, a pill is not going to change anything! I'm me and that's that!" (or something like that). Pretty smart kid, I think. I could see that medication was no longer a positive approach, and so could our psychiatrist. Advice at this point was that we wait at least 3-6 months before trying anything else... Maybe in the Fall we could consider a trial with Strattera, if we think he needs something. I agreed, and so Connor is back to going through his days without medication. Hopefully we will be able to find a way to help him cope better than last time, some way that doesn't mean we need to resort to more medication trials.
Another big event this week was announcement of the latest education budget for Nova Scotia: http://www.ccrsb.ca/?q=node%2F593 I was so NOT impressed! "CCRSB’s overall funding reduction, plus net cost pressures, means a $3.8 million budgetary shortage for 2011-2012." I wrote another letter to government... and now I'm again waiting to see what response will be. I am trying to be optimistic that Connor will get support he needs in school next year.
I'm sure I could write more - it's been a big week for us here! More importantly though, it's time for some much-needed "Dreamland" (this link is to one of my favourite songs, by Mary Chapin Carpenter). As I continue to try to practice Speaking the Language of the Virtues (as explained in more detail if you click this link), inspired by all the stories of positive change I'd heard last weekend from doing so, I hope everyone can awaken their peacefulness, and thank you to those who have practiced patience as I said I'd post earlier in the week ;-) Yeah, some have told me that you can do this type of speaking too much... There can be too much of a good thing?! "Quit talking the virtues, Mom!"
Wednesday, June 15, 2011 at 9:15PM
Anyone that's come in contact with me in the past week is very likely well aware that I was very inspired by many people and stories from the Virtues Project conference that I attended in early June. I have so many memories from the conference... As I am aware that some people are now following my blog because I write about ways to increase self-awareness, I wish to share an activity we did during our final day... an exercise in discernment. To get some formal instructions regarding this exercise, you can click here: http://www.virtuesproject.com/FiveSpread.html?personallife, and you can also do this exercise yourself, by clicking the links provided in this page!
Now, what happened when I did this exercise?
Well, first I needed to think of a question to ask... Of course, I had to ask the number one question I always find I'm asking myself (and I think most parents do ask this): How do I help my kids become high-functioning adults?
Next, I needed to perform something called a "five card spread"...
I started by randomly selecting my "core" virtue in response to this question... The intention is that this virtue should be at the heart of anything I do related to making this happen. LOVE ... I need to treat the kids as I want them to treat me, to say kind and loving things. (I note that I could have just as easily picked one of many virtues from http://www.virtuesproject.com/virtueslist.html. Sure, things like "obedience" and "honesty" could also be good, but I have to say that this particular virtue sure seems like the right "core" virtue for this situation.)
Following this, I needed to randomly choose my "guiding" virtue... This virtue should set my direction to move forward. TRUSTWORTHINESS ... I need to do the things I promise to do, even when I want to do something else, and think before I promise to do something, to be sure I can do it. Isn't that excellent guidance? I keep saying that I need to re-find my "pace of grace". I have so much I want to do, but I have to be careful not to take on too much. In the end, I need to trust that I will choose to do what I can, and accept what I cannot find time for.
Here I moved on to selecting a "strength" virtue... the one to keep me strong and purposeful in my quest to help my kids. ENTHUSIASM ... Of course, everyone can find strength from smiling, laughing, and enjoying what they do! This is a reminder to let myself look forward to the future! Not always easy, when your kid is getting frequently frustrated and upset!
Now things needed to get more serious... I needed to select my "challenge" virtue... Something I would need to be mindful about. FORGIVENESS ... The advice on the card? Stop giving uncaring people the chance to hurt me. Hmm... I'm not sure I know many uncaring people right now, but I do recognize that I need to keep myself from focusing on the bad stuff that has happened in past, to move on.
Finally, I needed to select a "sustaining" virtue... This is the virtue I should call on when I need extra support... when things seem to be getting tough, and I'm unsure what to do next. DETACHMENT ... If unsure what to do, stop and meditate before taking action, and then choose to do what is right. It is good practice to "detach" yourself from a situation for a while, to think before you act.
Well, I have to say that I've taken this to heart in the past 1.5 weeks. I've practiced "love" by making sure that I put time and attention into providing my children with regular virtues acknowledgements, and I see positive energy in them building as I do this. I've practiced "trustworthiness" as I have been contemplating my next steps, and trying not to jump and do everything I think I want to do at once. I've practiced "enthusiasm" as I've shared my stories about the conference, and I've certainly enjoyed all the virtues acknowledgements and even hugs that have come my way - all I can say is "wow" to all that! I've practiced "forgiveness" as well, as I've spent much less time thinking about the bad stuff from the past - easy to do when I'm focused on the possibilities I see now. Finally, I've practiced "detachment", as I've waited for a response to my letters to government and others. All in all, I have to say it's had a very positive impact in my world. I have received responses to my pleas for support, and I do have much reason for optimism, something I expect to be able to share in more detail in another post in a week or so :-)
I encourage others to try out this "exercise in discernment" - I'd enjoy hearing you share your results using the "comment" option here, or privately if you prefer!
Saturday, June 25, 2011 at 8:51PM
Thursday night... 30 minutes of sleep! That was so not how it was supposed to be! I'd had such a good day! This week was certainly an interesting week. So, what happened?
I've just come back from what I try to make my daily walk, where I get to ponder whatever is going on in my busy world in peace. This is typically about 30 minutes walking up a hill, mostly dragging our basset hound, followed by a faster perhaps 15 minutes to come back down the hill. I found myself tonight reflecting... Just what kept me up all night on Thursday? I wasn't feeling bad, I wasn't filling sick, I honestly thought I'd had a very good day, maybe it was a wee bit warm, but generally I don't think there was a great reason for it... Then it dawned on me... On Thursday night, I watched George Stroumbolopoulos interview Jodie Foster (click this link if you want to see the same episode). In this interview, Jodie Foster mentioned that some people (including her) are going through a "spritual crisis" and are "obsessive ruminators" - "people who think about something dramatic and cannot let it go, have to find out everything about it", etc. "It's hard on other people. I'm really enjoying this", she said. I'm thinking now that she described me pretty well on Thursday night.
I booked Thursday and Friday this week as "vacation" days. I did this because I volunteered to help with the Grade 5 Graduation Dinner in our school, where I was helping make turkey dinner for about 85 people on Thursday. This involved helping to remove about 150 lbs. of turkey from four half turkeys, as well as cooking about 55 lbs. of potatoes, among other things! Lots of work, but work I always seem to oddly enjoy :-) You'd think I'd be exhausted and easily fall asleep after something like that, wouldn't you? The next day, I also had a variety show and piano recitals to attend, so I felt going back to work would be pretty pointless - I wouldn't be focused there anyway!
Well, Thursday also marked what I think represents a step toward some major, positive change in my "finally diagnosed Aspie" son's world. We had him go through all this process for a reason, and this day marked achievement of that reason. This was the day when we had a meeting that we've been working toward having for a very long time - a meeting where the school board formally recognized that our son needs accommodations in the regular school curriculum. In the meeting, present were the coordinator for student services, the student services consultant, the autism support specialist, and our son's various/already supportive teachers. You can imagine that this is a bit overwhelming. I found myself giving responses when asked, but mostly just listening, trying to take in and remember all that was being said. It was so good to have it acknowledged that, yes, they recognize that our son needs accommodations, and they plan to do something positive with that information!
So, what will they do differently with him from here?
First, they formally announced that there will be more support in the school next year... There will be 3 full-time Education Assistants in the school next year, where this year there are the equivalent of 2.5. This means that when our son needs support because he's getting overly frustrated or unable to focus, there will be someone to help him. There will be someone to take him out of the room to do some "heavy work" to help him calm down or (better yet) avoid getting overloaded to begin with, someone to coach him when he's not focusing or unable to understand the verbal instructions, and someone to just be there if he needs to get away from the group for a while!
They also recognized that he needs help with social skills. This is an area that no one in the school is formally trained to help with, and an area where actually it seems only ONE person in the whole school board seems to be trained to provide formal support. That's right, there is only ONE autism support person assigned to help kids "on the spectrum" for the entire school board! Well, good news here is that there are materials available to help teachers learn to teach social skills as well. Also, more importantly, there is a teacher in the school willing to learn to teach these skills! Over her so-called "vacation" this summer, she plans to study materials written by Michelle Garcia Winner. You can learn more about those materials here: http://www.socialthinking.com/ Isn't that exciting! I believe she will bring this program not just to our son, but to other children also in need in the school!
Next, we talked about gym. Gym has always been a source of frustration for our son... He has always just seemed to get very easily frustrated and upset by this. Little good seems to come from making him attend gym, though he always says he "enjoys" gym! We have not been quite sure why, but we do suspect there may be sensory issues at play... We discussed that an Occupational Therapist is planning to do something called a Sensory Integration and Praxis Test (SIPT) with him this summer, ("just" in time before his 9th birthday, because it's only for up to 8 years 11 months old!), where she may help us more clearly understand what exactly may be frustrating him. We also talked about a "new" program being brought into Nova Scotia schools, a program that it is expected may be good for kids on the spectrum, based on something called the "Active Start" program (originally for ages 0-6): http://www.canadiansportforlife.ca/ltad-stages/active-start In this program, our son would be (hopefully temporarily) removed from the "regular" gym program, and instead taken to a program with less kids simultaneously involved. Here, he would hopefully face less sensory overload, and so be able to attain some of the skills he's been delayed in attaining, then perhaps re-join the regular gym program someday. Here, the gym teacher seemed to light up. She tells me she is very excited to try this, as it's been very frustrating for her to watch as our son has been so upset, when he seems to really want to be part of gym! She also sees opportunity in our son!
We also talked about music. Here, the suggestion was perhaps not as positive, but I do see it as appropriate. At least for a while, he will be exempted from attending music class, as the school board is not currently sure how to help him there. Here is where I brought an idea... I had just heard, from the band teacher at our other son's school, that the iPad2 can be loaded with many free apps that teach music skills. This band teacher plans to share with me the list of apps she has become aware of in this area. I am inspired by the possibiliities with this, because our son did very well with piano until he needed to start doing more theory writing, but he loves computer games! I think that in lieu of being forced to learn music within a group, it may be better for him to learn these skills in a more solo way, so this is our idea in this area.
Finally, we talked about additional autism support. The autism support specialist also has ideas... There are training opportunities for the teachers, which she will gradually share. Really, the only "negative" here, again, is that she is the ONLY one currently assigned to provide this support for teachers. Seriously, Nova Scotia government, this is a key place where change needs to happen! We need more "autism support" people to help our teachers! It will be mid-October before she can really get involved and speak to them. In the meantime, there may be some training available elsewhere during the teachers' summer vacations that they are considering.
I'm sure there were other ideas also mentioned in this meeting... I'm probably forgetting something. Still, to me this is such a big leap forward from where we were that I feel it's much reason for optimism. Much to "obsessively ruminate" about, I must say!
At least last night I did sleep - 11 hours! Looking forward to seeing what happens in school in the Fall :-)
Reader Comments (3)
Christine, I would say this was a very positive meeting and sure hope they are able to implement all of the great suggestions for accomodating your sons needs. You didn't mention an IPP which must mean he is meeting all the expectations for regular academic programming. That is good.Have they really gone back to 1 Autism Consultant for the whole Board? Just a couple of years ago it was one person for Pictou County, Celtic Family. This is a disgrace.
All the best, keep track of how well things are going with the Accomodations, maybe a follow up mtg in October. Hope you have signed a copy of the Accomodations Form.
I love that the social skills component is of interest to this teacher. Thank you for providing the links also!
Jean, There was talk about an IPP, but no formal paperwork has been done/signed yet. I think we'll get to that in the Fall. I am on excellent speaking terms with the school, so I'm not concerned about that right now. Based on your comment, I possibly need to check my facts about the autism support... perhaps she is assigned to just the Celtic Family, as you say - still a LOT of responsibility for one part-time person. Also, as I know you have connections and have suggested so... if you have thoughts about how I might go about writing for a magazine, let me know? I might be interested in that, but I'm not sure how I'd start. Who would I contact? What would a good approach be? Have to think about that :-)
Karen, The teachers in my children's school really are VERY good. They obviously have the kids' best interests in mind in all that they do. Of course, you might already know this... I can't tell for sure because I know several people named Karen and you might be the one I know from the school...
Thank for your time and attention!
Thursday, July 21, 2011 at 10:31PM
My initial purpose in starting this blog was to raise awareness about Autistic Spectrum Disorders, to try to increase support for my children in school. As this seems to be happening now, I wonder if I should continue with this blog. If you have been reading this blog, I would appreciate if you would respond to my single question survey.
Thanks in advance for your time and attention!
Reader Comments (2)
Seeing the changes in Connor lately it might be interesting to see the changes followed up in the fall. He seems so much more in control.
July 22, 2011 | Dad
Dad, While I agree that Connor seems more in control, I think it's just that... he gets to be in control more now... He gets to choose to go outside or on the treadmill, so that he can have his computer time when he wants it. I expect school to be quite a pain to start again in the Fall, because he'll no longer get to pick his times for things as freely. His schedule will look much less like he wants it. Time will tell though :-)
Saturday, July 23, 2011 at 8:03PM
Responses to my survey in my last post seemed to indicate that people are finding my stories helpful, so I guess I'll continue sharing :-)
I mentioned in a recent post that an Occupational Therapist (OT) wanted to complete Sensory Integration Praxis Testing (SIPT) with our almost 9 year old son, to see if this could give us some new information regarding some of his ASD-like traits. As this testing is to be done before a child turns 9, we acted quickly... It took about 4 hours to complete the tests, spread over the past two Fridays.
Some of the testing seemed pretty easy for Connor, as he did things like draw lines between dots and move blocks around following directions. He seemed to me to have no trouble with even the more complicated tests involving puzzles. He showed that he writes "bottom up" still - not a surprise, but apparently that is more cumbersome than if you write "top down" - still something I think might be worth taking some time to try to correct, with her help. There were tests related to balance, where he'd need to do things like walk a line or hop on one foot, and he seemed to do quite well with those as well, as far as I could tell.
Also, several tests were quite frustrating for Connor (making the testing especially on the last day feel like it would never end). However, she was very patient and they did finish... and then I realized those tests required him to do things without use of his sense of sight - things like note where she touched his hand, without seeing her do that, and then he'd have to touch the same spot. Given we are told that he relies a lot on visualization, it should not really come as a surprise that he gets upset when he's asked to do something without sight.
One piece of information I'm finding very interesting! It seems very likely that Connor has "vestibular hyposensitivity" ... yeah, a mouthful. Simply speaking, she said, it means he doesn't seem to get dizzy after spinning, as "normal" people would. The vestibular system is about balance, and there seems to be something different about this system in Connor. To learn about this, she did a pretty simple test... She positioned him sitting on a board with wheels, and then she turned him around several times (he loved this). When she stopped spinning him, she looked at his eyes, and they didn't jump side-to-side. Interestingly, I just did this with our oldest son Tom and found the same response - no jumping motion in the eyes after spinning! To try to confirm I was watching for the right thing, I then had my husband do this (pretty funny), and his eyes did move as I thought they normally would. I'm obviously not a professional, but I do think I'm making an interesting observation here...
Now, if this is the case, what does this mean - "vestibular hyposensitivity"? I decided tonight to do a quick Google search on this topic, and there is a lot of information available about this... One page has really caught my attention: http://www.child-behavior-guide.com/vestibular-dysfunction.html. From here, I note the following text:
"Vestibular Hyposensitivity to Movement(2):
• Unaware of being moved
• Lack of motivation to actively move
• Swing for long periods of time without getting dizzy
• Unaware of sensation of falling and failing to protect him/herself by extending hands or feet to catch him/herself
Sensory Seeking Vestibular Sensations(2):
• Loves amusement park rides
• Described as hyperactive – always running, jumping, and hopping
• Engages in rocking or rhythmic movements
• Trouble sitting still or staying seated
• May vigorously shake head or rock rhythmically
• Crave intense movement including jumping, upside-down positions
• Enjoy swinging very high
• Loves seesaws, teeter totters or trampolines more than other children
• Can’t seem to sit still
• Likes spinning in circles"
Connor and Tom do seem to like to go in the backyard on the swings, but I honestly didn't think that was for any reason other than they are kids.
I think it is interesting though that often I have a lot of trouble getting Connor to move, for example, to get his shoes on or get dressed... he just seems to sit there and ignore me, more so than our other kids, who do not seem to have ASD traits quite as intensely. This could explain that?
I note that at the Pictou Lobster Carnival or Crystal Palace my kids seem to be nearly insatiable... They want to go on the rides for hours! They were on there 5.5 hours at the Lobster Carnival this year, between 2:30 and 10 pm. And that involved mostly the fast rides! Nothing seemed to shake them up, while I did observe that many other kids their age would get rather ill after some of those rides.
Teachers - how many times have I heard that my kids refuse to sit still in class?! Seems this condition might explain that as well!
I need to check my daughter tomorrow (she's in bed now) :-)
I am now anxiously waiting to hear more from the OT. If this is all as I understand now, I'll want to discuss with her regarding options to help with this, including perhaps the Wilbarger brushing protocol. That sounds like a nuisance/might be tough to get them to do, but I suppose it might be worth the work it would take for a few weeks! There were a few other things that I think she observed during testing that perhaps I did not understand. I must now practice that virtue of patience again, as she is doing all this outside of her regular job/during her days off, evenings or weekends - in training to do this testing with more kids.
This seems to have so many good possibilities! Can you tell I'm excited about this? ;-)
I'll also add here that the reduced token system that we introduced at the beginning of the summer seems to be working VERY well in our house. Connor goes outside to play for 30 minutes, or on the treadmill for 10 minutes, so he can go on the computer for 10 minutes. He uses an online stopwatch to track his own time, and he seems to be very honest about it. It seems that because he's in control of this he is much more relaxed. He also seems to really like our 13 year old babysitter, as she plays with the kids every morning (mostly outside with a soccer ball or in the basement playing pool) while I'm working. There are still more moments of intense frustration than I'd like/too much hitting and kicking, but overall things are going better than last summer.
As always, I'm interested in any "comments" people wish to make regarding this post. While dialog so far regarding my posts has been pretty sparse, it does give me a little positive boost every time someone responds, as I know I'm not just talking to myself here ;-)
Reader Comments (2)
Reading about the journey you're all on is fascinating and inspires much wonder in me. I love the creativity of your spinning tests and the openness of your curiosity! I, for one, hope you continue to blog. As you say, this is partiallly your journal to self awareness. The walk that you walk is your song to sing.
with Gratitude :o)
Hi Christine,
Blog does provide great awareness on syndrome.
Even though these are much anxious moments, but you are still taking out time to share all information of your experience with others, which really is exemplary.
Based on Connor responses for all the tests, sounds really positive. He might be slow in few activities for now, but sure he would pick up the pace soon.
"Optimism is the foundation of courage."
Wednesday, August 3, 2011 at 5:15PM
If you have a kid with ASD, you'll be very familiar with the literal thinking trait. Kids with ASD seem to be very "literal" in their thinking. If you ask them to do something, they often seem to have a hard time thinking past that, to figure out what you really mean.
Here's a short story to illustrate how this affects our everyday life...
On Sunday, we decided to take the kids on a day trip. We had a 2 hour drive there, and a 2 hour drive back. We asked the kids to get ready and get in the van. "Make sure you use the bathroom, then go get in the van," we instructed.
About 45 minutes later, our son announced he had to pee... 45 minutes from home, that is! This is when we discovered he wasn't wearing any shoes. It's true what they say: "No Shirt. No Shoes. No Service!" We had to buy him some shoes so we could go for lunch at the restaurant that day.
Parents of children with ASD must choose their words very carefully! (This is true sometimes of kids without ASD as well, but I think more so here.)
Others have examples of stories like that? Use the "comment" button so I don't get another experience like that ;-)
Thanks!
Friday, August 19, 2011 at 10:01PM
Toward the end of the school year, the autism support person for our school loaned me a comic book that she thought our son might enjoy and benefit from. Several times, I've pulled out the book and suggested I read to him, but he's always been quite uncooperative about it. I had put it aside for the past month, but tonight on a whim I decided I'd try again. After all, he is still very impulsive, pinching and punching his sister and sometimes other little kids over very minor situations. I am forever looking for ways to stop this behaviour!
"Superflex takes on Glassman and the Team of Unthinkables" is part of a curriculum about social thinking that is available from Michelle Garcia Winner:
The story begins by introducing you to a team of "Unthinkables", characters that can invade and control the brains of people in Social Town. Superflex is the super hero in the story, and he attended the National Superflex Academy to learn strategies to defeat the Unthinkables and teach others to do so.
I don't think I recall ever getting Connor's attention as I read to him for longer than about 15 minutes. Tonight was different. We spent an entire hour tonight, reading this book together and discussing answers to the short quizzes in the book. This was an excellent way to open conversation about his "huge reactions", as "Glassman" causes those, and his "tendency to get ideas stuck in his head", as "Rock Brain" causes that... There are many members in the team of "Unthinkables", and you can read about them here: http://www.socialthinking.com/components/com_virtuemart/shop_image/product/superflex-comic_page-2.jpg
The comic book offers simple strategies to defeat each of the "Unthinkables", and Connor seemed rather optimistic that he could use some of the strategies in school this year! I think spending more time with this book, and perhaps the full curriculum that seems to be available for $49, might be a good next step for us.
Thursday, August 25, 2011 at 6:58PM
On Monday, a friend sent me a link to an interesting podcast:
It caught me at a time when I was rather cranky, because I was watching my son again alternating between being fixated on the computer and going outside with the others/hitting and punching them instead of practicing good social skills. It's very frustrating to be stuck in my home office working sometimes, unable to intercept all the little "teachable moments" that happen and to try to correct these behaviours. I provided a rather strong response to my friend: "Yes, technology is wrecking my family." (I later calmed myself down and moved to a bit more rational thinking.)
Now, here's a story that again speculates that, because Kevin and I are both "math-minded" types (a.k.a. computer geeks) we were at high risk of having kids with Asperger's:
I've actually reflected on these stories quite a lot this week...
I think that "math-minded" people are more likely to become more involved with technology, leaving them much less time to practice important socials skills. If I observe my family, I see a correlation between computer time and social skills. More time on the computer seems to equate to less developed social skills.
Therefore, my theory is not that when two "math-minded" people marry they produce kids with ASD... Instead, my theory is that kids develop Asperger's when they learn to play with technology before they learn to play with kids... They developer Asperger's when they fail to spend enough time developing social skills first. Compounding the issue is the fact that, once a kid really gets to enjoy technology, it's hard to get them away from it and learn to play with other kids, so it's very hard to reverse the situation. After all, technology is permeating our entire world! Technology is in our homes, schools, libraries, businesses... everywhere!
My son did not really present symptoms of ASD until he was two years old. During his early years, whenever I was bored (which seemed to be often because I like to be around people and I was home a lot), I would go over to my computer and start emailing friends. My husband did similar - he loves his computer games. I think this means we interacted less perhaps than we should have with our son. My son was always physically with me, almost always nursing, but I admit that I was not always as focused on him as I now think I should have been.
With that in mind, I don't think it makes sense that marrying someone "math-minded" pre-disposes them to having ASD. I think it's much more likely that the environment causes the condition, than that a person is born with it due to genetics. Yes, I'm saying that I believe we caused this in our son, because we were (are) addicted to technology. We have missed many teachable moments in our son's early years, when we could have been more focused on teaching him social skills, and now we're in a state where we must change that.
Do others out there with kids with ASD see "technology addiction" as prominent in their households? In my world, that's a very big situation to change :-)
Reader Comments (4)
We have always had computers around, and sitting at them also when the kids where small. That's very normal for DK IT workers. If it was to cause ASD, even more would have it, also ASD also comes up in less IT savy families. We experienced a lack of interest for the social interaction even if we tried hard.
Look up refrigiator mom - I don't have the impression you are like that...
But I do think that it autism & "nerdy parents" are related. like stated here: http://translate.google.com/translate?js=n&prev=_t&hl=en&ie=UTF-8&layout=2&eotf=1&sl=da&tl=en&u=http%3A%2F%2Fing.dk%2Fartikel%2F120184-hollaendere-paaviser-autisme-foelger-de-tekniske-fag&act=url
ASD people are just wired differently (Tony Attwood)
also read "The Geek Syndrome
Autism - and its milder cousin Asperger's syndrome - is surging among the children of Silicon Valley. Are math-and-tech genes to blame?" http://www.wired.com/wired/archive/9.12/aspergers_pr.html
Jesper
Great to hear from you again, Jesper! These articles are both interesting reads. I fully agree, it's perfectly normal for IT workers to be on computers a lot - it's how we make our living, after all! Still, I find myself paying attention to stories I've heard from some people who have visited, for example, Guatemalan orphanages. In such places, it seems the children are much more relaxed and calm than they are in our area. This leads me to believe that, if we in the IT world exposed our children less to technology at such an early age, perhaps our children would not develop Asperger's. Perhaps they would have standed a better chance at developing those much-needed social skills. As the song goes though, "We can't go back so we've gotta go on. Stick together staying strong. There's a Diamond Castle in my mind, and someday soon, I'm gonna find it!" This is obviously purely a guess on my part - I've not done any research to back up my theory that avoiding technology in the early years can prevent Asperger's. I know that when my son is away from a computer, he can't function well. He's seriously addicted to the computer, and so I wish I'd never introduced him to a computer. I wonder sometimes, if I was to quit my job and to move to an area where there are no computers, would he effectively be cured after some period of time/would develop those much-needed social skills. I look forward to the research that comes next. Too many parents (usually mothers, as the articles state) end up having to quit their jobs to deal with it all. There are days when I feel I may need to do that. I hope I don't have to quit my job to help my son, at least until/unless I figure out something else I can do to keep up our lifestyle :-)
I understand your position. I have a different situation, however. While I have socially impaired children who are on the spectrum, computers were not around our home during their early years. I spent a lot of time with the boys, encouraging their play with other children. Their issues with social interactions were quite evident. Now having this technology in my home, it is a struggle to keep them (and my husband) off the computer and out in the big world. Yes, I am math smart and yes, my husband is math smart and also has noted his own Aspergers traits. I strongly believe that the qualities of Autism/Aspergers are inherent in my children and that they are drawn to the technology as a result. It is true though in my mind- and in agreement with your observations- that this technology can make it much more difficult to provide socially rich opportunities that our special children will enjoy. Using the token system has been a big help for us, always rewarding social interaction and role modelling it as well.
Don't fall into the trap of blaming yourself. Your son is who he is, even if you had done things differently. Just look forward at what opportunities you can provide to maximize his potential and have a happy life.
You are a great family, focus on your strengths and and always move ahead.
Thank you for your understanding. I am working very hard to focus on the strengths now. Moving ahead, as you say! Have a great week :-)
Monday, September 5, 2011 at 8:20PM
Tomorrow is the big day. So glad it's finally here! School starts in the morning, and for the past week my son has been really stressed out, and so I have been as well. He's been especially fretting about all the "new" things that will be happening. He's really upset that he will need to start learning French. He's not pleased that he will have new kids in his class. and so on...
Then I received a recommendation tonight that was so great! One of his teachers called me and suggested I talk to him not about what will be "new" but about what will be the "same". So simple! Honestly, I don't know why I wasn't focusing on that already. It's pretty obvious that a kid that doesn't like change would want to hear about what will be the "same".
Anyway, as I was tucking him into bed tonight we talked all about what will be the same... I'd be there when he gets up at 6:30 to help him get breakfast, I'd pack his lunch, he'd get dressed, if he's okay with it I will take his picture like we did last year, he'll take the bus, he'll go in the front door of school, he'll take off his shoes and carry them/go to the coat hook to hang up things, and he'll go to his classroom to see his teacher. It's a blessing that he will be in the same classroom and with the same teacher - a Grade 3/4 multi-age room where he will now be in Grade 4. He was smiling as he went to bed.
Good advice for others that might be struggling with similar kids tonight. Talk about what will be the "same" and not what will be different!
Sunday, September 18, 2011 at 10:00PM
School's in now, and generally going pretty well because more support has been put in place this year. I attended a local school board presentation on Thursday evening, following which I met a special ed teacher that said she’s decided she’s nervous about having kids of her own because she’s met many parents of kids with ASD and they always seem to be trying to solve a difficult puzzle. She's not sure she could handle that all evening, given she already deals with it all day long. I couldn’t help but at least partially agree with her, as I like to think that my 9 year old son’s issues represent developmental delays, and not a permanent condition - essentially a puzzle to be solved. She has one of the most difficult teaching jobs there are! Many books offer lots of encouragement, and so I again find myself back to reading, trying to solve that puzzle!
I’ve again picked up “A Mind at a Time”, by Mel Levine, M.D., and now I’m in Chapter 6 of 13. It’s still a very difficult book for me to stick with, because it’s packed solid with lots of detail and, like all parents, I find my days are already very full. Still, I think I may be able to learn a lot from this book, so I’m pushing through it, a few pages at a time.
I’ve been told that my son has very strong “visual” skills, but is challenged when it comes to need to follow “verbal” instructions. This particular chapter is about sequential ordering - I'll try to paraphrase (but again recommend you read the book if you want full and proper detail). We all know that children are not born immediately knowing how to follow instructions from adults. We must gradually develop the area of our brain responsible for this, by going through stages of development. For the “sequential ordering” area of our brain, we must learn to:
1. perceive
2. remember
3. create
4. organize, and then finally
5. develop higher thinking.
We must progress through all of these stages of development, one at a time, before we can really follow instructions properly and in a way that ensures we are thinking them through.
As I was reading about this, I reflected that I’ve been trying to teach my son for quite a long time now to remember his phone number, and he still seems to be unable to do that at age 9. Similarly, he could not yet tie his shoelaces. I decided to do another “test” in this area – so I asked my son to recite the months of the year in order… It turns out he is challenged to even name a few of the months, and cannot yet name them in order, though I made assumption he understood that long ago!
Since going through this exercise, I decided to spend some focused time with my son, to try again to teach him how to tie his shoes. I started by talking about the characteristics we must “perceive” – cross laces, make loops, pull, etc. He seemed to understand that, so I moved on. To tie shoes, you must “remember” a series of those characteristics. I suggested we focus on the “first” step only – I showed him to hold the two laces and cross over - no problem. Next, I suggested he try to do two steps. This is where the “frustration” kicked in. “Mom, I can’t remember that!”… It seems he was having trouble with “remembering” the steps in order. It’s not that he couldn’t “perceive” what I’d said, it’s that he couldn’t “remember” more than one step in a row. I have discovered that we need to spend a LOT of time repeating steps, and showing him visually, before he can “remember” the steps. After about two hours of patiently showing him the steps, letting him take lots of breaks and try when he wanted to, I’m very proud of my son – he has learned to tie his shoes at last!
I feel now that we need to strengthen this area of his brain, so that he can “remember” sequences and will be ready to move to the next level, “creating” sequences, which I believe is essential to writing. Perhaps doing this will allow him to get past his disability in the area of writing?
How can we practice “remembering” sequences? I suppose we need to teach him more “sequences”… Teach him to learn the months of the year in order, remember and dial his phone number, learn to tie a neck tie, learn to print according to instructions that state that you should move your pencil “top to bottom”, learn to do cursive writing according to instructions, recall family member birthdays in the order they occur during the year, reduce fractions, and perform simple daily routines like getting dressed by putting his socks on before his shoes. Only AFTER he learns to “remember” sequences does it now seem likely to me that he will be able to “create” his own sequences – stories about things that have happened to him, for example - stories that depend on "remembering" sequences of events that happened. After that, perhaps he can learn to organize items involved in sequences – to organize his time and materials. Finally, after that, perhaps he will put it all together for reasoning and problem solving.
As the author puts it, I think it makes sense… Perhaps we need to address the areas of the brain one at a time, a level at a time, and “a mind at a time”. With all this complexity, it’s no wonder the school system is full of so many kids with challenges. Every kid develops at his or her own pace, yet too often we expect them to perform all at the same "Grade" level at the same time. I’m not the only person that is thinking this, so I'll share one of my favourite videos on this topic here: http://www.youtube.com/watch?v=zDZFcDGpL4U&feature=share
Now, to find time to teach him more of these "sequences" :-) As always, I look forward to any "comment" entries you wish to submit!
Update on Sunday, September 18, 2011 at 10:29PM by Christine
Saturday, October 1, 2011 at 6:29PM
A friend shared this video with me today:
I think this video is full of excellent advice for teachers (and parents), and is perhaps even a "must see" for all teachers. I wish I had seen this video years ago. The ideas resonate strongly with me, describing very well how I have learned (often the hard way) that I must interact with our children.
Most interesting to me tonight was the statements about handwriting... Our 9 year old son is still printing at what I view as about a Grade 1 level, although he is in Grade 4. He becomes very frustrated when he needs to print his thoughts on paper. I've tried to encourage him to learn to print top-to-bottom and smaller, to practice, but so far I have not been successful in leading him to do this. It's like he's stuck, like he will always print in larger size and in bottom-to-top manner. I keep telling myself, well, at least he can print if he needs to! Does it really matter that much if he changes in this area?
This video asserts that, even with lots of practice, my son is not likely to learn to print any better than he is doing now. I wonder if that's true... Instead, those in the video recommend that we re-focus our energies to teach my son how to type on a computer.
Interesting thought... Given that as adults we are now much more often required to type than print, should "Keyboarding" be brought into Elementary School as a skill that must be learned? I'm thinking yes, though I recognize that today many teachers are not trained to do this. Perhaps it could be brought in as a specialty class, sort of like "Music" and "Gym". What do other parents think about this?
Reader Comments (3)
Christine I agree, this is probably the best 37 minute video I have seen dealing with autism and education. The presentation is inviting and appealing, I didn't learn a lot I didn't know but I liked that it was all explained without all the Jargon & lingo. They were all speaking from real life experiences and you had a sense of the personal investment they had in the children they spoke of.
Your blog is such a wonderful addition to the video. For some children keyboarding skills should be in their IPP. There are some excellent pieces of software to teach kids keyboarding skills. A step beyond that for kids who have lots of great thoughts they just can't get down on paper, is a piece of software called Dragon Naturally Speaking. I had it in school here 10 years ago and I am sure it has been revised since.
Good luck with the keyboarding.
Thank you for the support, Jean. I will open some dialog to discuss further with the school, regarding whether or not we can/should add keyboarding to his IPP. As a parent volunteer assigned to help kids in the computer lab in Grade Primary, I used to bring in a free program called TuxTyping (http://tux4kids.alioth.debian.org/tuxtype/index.php) and the kids seemed to enjoy it. The problem I had with it was that it didn't reinforce "proper" keyboarding - hand positioning. I will need to explore what other programs are available for this purpose. (I have also been watching for an iPod Touch game that would require my son to draw letters with this finger, but haven't found a good one for that yet either, to my surprise.) I believe I can consult the school board's technology specialist. Open to other suggestions as well!
Just found an app for the iPod touch to teach printing: http://itunes.apple.com/ca/app/abc-tracer-alphabet-flashcard/id324616399?mt=8
Monday, January 23, 2012 at 11:13PM
It's been a year since I started this blog! Great time to reflect and celebrate some of our successes, right?
As I look back at this past year, I first think about where I was a bit before I started this blog. Really, I was in a very frustrated state, and growing quite depressed as I felt at a loss to get my son help that I knew he really needed in school. I had consulted over 20 professionals and seemed to be getting nowhere. I couldn't seem to get a written diagnosis, which I was told I'd need to do to get him more support in school, and I was hearing talk about proposals to make significant cuts to the school system's budget at the same time. I felt I needed to do more. I had heard about autistic spectrum disorder, and found myself reading books on that subject. As chance would have it, I was also learning about mass collaboration technologies through my work. It seemed to me like I was being called to write, to share what I was thinking more publically, and so this blog was born.
I began by sharing many thoughts of personal reflection. As I read about ASD, I related to many of the traits described. In many ways, I fit the description of a person with ASD. By the end of January, I had shared over 20 posts on this subject. I was overstimulated and barely sleeping. I wrote about how people with ASD tend to be more logical than imaginative, more music-minded, experience social skills development differently, have issues with emotional regulation, and tend to gravitate toward careers that involve less social interaction. I also shared my passionate interest in improving the public education system's approach to helping children like my son. I was further energized to write, as I was hearing that proposals had been made to make significant cuts to funding of the public education system in Nova Scotia, cuts that would make support for my son (even with a diagnosis) in jeopardy.
By the end of January, I found myself reflecting deeply on many events of my past, looking for answers in my own experiences, explanations for what my son might be going through. I wrote about how we had explored diet changes with my son, to no avail. I wrote about how people with ASD tend to have obsessions and food issues, mentioned our experiences with tick behaviours, identified many celebrities also diagnosed or believed to have ASD. I reflected that meditation and other calming activities can have surprisingly positive effects. I wrote about how service learning helped me grow, to overcome my shyness and raise my self-awareness. I mentioned how focused work on activities that involved use of fine motor skills was something I learned a great deal from as a child.
ALL of the above, I had written and posted in just a few short days, and managed to cause a bit of worry amongst my family and friends! Still, on January 24th, a year ago today, I felt so great! I felt like I was finally making progress. I started hearing from people around the world. Amazing support, for which I will forever be grateful!
I was spending a fair bit of time learning about Temple Grandin, a person who would really change my perspective. I was learning that a diagnosis of ASD does not mean that you are not intelligent. Quite the contrary, people with ASD can be very high-functioning, even to the point of "savant" status. So inspiring, to read that my son could be in the same category of intelligence as people like Einstein! I developed even more intense feelings, that the public education system needs to change, to focus less on memorizing facts, and much more on helping people develop social skills during the early years, to help the many people with ASD in our society fit in with the so-called "neuro-typical" people. I really enjoyed Temple Grandin's TED podcast on this subject.
By January 25th, I had also started writing letters to government, further petitioning to try to get help for my still undiagnosed son, and for other kids like him. Social skills should be a focus in education, just as academic skills in the areas of reading, writing and arithmetic are given attention.
I wrote about how people with ASD are "pattern thinkers" or "think in systems", and about how science tends to be very interesting to kids with ASD. I identified with my own family experiences, as I learned that traits of ASD tend to be experienced as a sudden change onset at about age 2.
Many times, I expressed my feelings of frustration with need to "label" my son with having a "disorder" or "disease". So many people in this world can be described as having ASD now that I have been developing a feeling that it's really a personality condition more than an disorder, although I do fully recognize that this particular personality has a much harder time "fitting" in the current public school system's approach. Many times, I shared my frustration regarding how LONG it's taken to get a diagnosis, to get my son the support he needs.
We consulted a private psychologist in early February, after being told waiting for the public system to help us could literally mean waiting more than another year. She advised us to go through another assessment process with her, about 17 more hours of questions and tests. I continued reading as I waited for that, learning more about how ASD presents differently in people, especially in girls. With recognition of my daughter's eating issues, I began to feel that not only did my son have ASD, but perhaps all of my children. I continued to question whether it is really a disorder, or merely a personality. I wrote about how people with ASD can sometimes come across "scattered", according to another book I was reading. I shared our experiences with childhood rages and emotional outbursts.
I had a very long wait, until April finally arrived and we went through those assignments. Finally, we had our diagnosis of Asperger's and ADHD for our son, on April 20th. Finally, I thought we would be assured that we would get all the support he needed in school. Taking some of the advice I started to receive, I entered into a new approach with my kids, bringing "token" systems into the house. I also shared our experiences with medications in past, and our decision to try again. Later, that would lead to decision to stop all medications, as our son began talking about suicide at the age of 8!
Unfortunately, May just brought me more frustration, as I heard further talk of cuts planned in the school system, and fears developed that there would not be enough funding to allow support to be provided to my son in school. I wrote to government, and also to key people in the school system. I made still more people aware of our situation.
I got away from home for a weekend, attended a virtues conference, where still more people heard my story. I was filled with positive energy from that conference, filled with gratitude! Toward the end of June, just as school was wrapping up, I shared that we had a positive meeting at the school, where things were most certainly looking as though they were developing toward a more positive approach for our son in the Fall. Our son would have a helper in his classroom in school and also a resource teacher more focused on helping him. Such a relief! I also shared my disappointment regarding how few people are really trained and available to help kids like my son. We have a long way to go yet, to really help him and others like him!
In the summer, we began working with an Occupational Therapist as well, recognizing that it might be that our son might benefit from us having more understanding regarding where his challenges come from. Some had indicated that he might have sensory integration issues, and so assessment in this area seemed appropriate. We learned he may have a hyposensitive vestibular system, and are still learning more as we meet with her.
I wrote about a family trip, where we were reminded that people with ASD often think quite literally. I had told our son to use the bathroom and go to the van, so he did just that, and left his shoes home. True story! We can look back and laugh at such moments, though at the time they are rather stressful. I shared that we had read about the "Team of Unthinkables" as a way to work on his social thinking skills. I noted that stories were beginning to pop up in the media, regarding how when geeks marry they tend to produce kids with ASD as offspring. Can relate to that as well ;-)
I shared the apprehension that comes with starting a new school year with ASD. I shared a few more posts, regarding still more topics I'd read about ASD, about how everyone's mind can be so very different, and about how typing might be easier to teach a kid with ASD than writing. Then I slowed down :-) October 1st was my last post, until tonight. I have often thought since then that I wanted to write more, especially about book I've been reading, written by Dr. Heather MacKenzie. (I'll save that for next post.)
Tonight, as I started when writing this post, I wanted to take some time to say thank you. I have apparently had 827 unique visitors to this site in the past year. My pages have been viewed 2,749 times. I have a personal inbox of email that is overflowing with stories from people around the world, people who relate to what I've shared, many thanking me for my perspective. I apologize if I have not yet replied to your message - there are 654 messages in my inbox right now that I have not replied to... My intentions are good, but I simply cannot seem to keep up. Really, I cannot say thank you enough to all who have taken the time to write to me! YOu have all helped me so much to move forward.
One year later, I think I have a much more positive outlook and perspective. I really feel that we can help my son succeed. I feel that he has a personality of his own, making him the unique and very intelligent person that he is, and that we simply need to keep being patient and helping him learn that it takes ALL kinds of people to make this world go around. Yes, he does need to catch up with many of his peers, to learn important social skills that they have somehow intuitively learned without so much effort, but I believe that will come, with time and patience. People with ASD just have a different way of looking at the world, compared to neuro-typical people, and so I think it's on all of us to help them "fit" - to not try so hard to change their perspective, but to help them also see everyone else's perspective and connect. His heart is very much in the right place!
In summary, thank you very much to everyone who has supported me in this past year. I look forward to reading more of your stories, and sharing more with you! I'm always happy to hear from you, even if I don't always reply directly to you!
Reader Comments (3)
I watched a news story the other day that concerned me. Apparently because of the high occurance of autism, the medical society in the states is considering dropping Aspergers as a condition as though it doesn't even exist. This would supposedly allow them to concentrate on autism specifically and save a lot of money in support payments to help these people. It seemed to feel that aspergers was not a serious enough condition to persue medically. Wish I could remember the name of the book that they published re this.
January 24, 2012 | Dad
I've heard suggestion that one label be used for all on the spectrum, but not suggestion that people with Asperger's would no longer be labeled as having a condition that needs support... Instead, they'd be described as having Autsitic Spectrum Disorder or perhaps Sensory Integration Disorder. There would be less names, not less decribed as having a disorder. I think any condition that disrupts the neurotypical order of society likely still should be identified, so support for all people with such a condition, labeled or not, can be made available. The public systems need to recognize the differences in people, strengths and learning preferences, and adjust to teach children in a way they are able to relate to. I do observe some teachers attempting to do this. Not at all easy. A very tall order! Know what the news source was?
http://www.wrongplanet.net/postt150983.html seems to be about this proposal to remove Asperger's as a label. I think ASD would remain in its place.
Saturday, February 18, 2012 at 11:12PM
Back in October, I was fortunate to attend a conference in my community, where Dr. Heather MacKenzie spoke. She has a Ph.D. as a speech-language pathologist and educator, and has spent the past 15 years understanding autism. As a result of hearing her, I was inspired that still more can be done to ensure our son grows to his full potential, and so I picked up a copy of one of her books, called "Reaching and Teaching the Child with Autism Spectrum Disorder".
In her book, Dr. MacKenzie shares her "Learning Preferences and Strengths" approach to helping children with ASD. I have written in past about Myers-Briggs personality types, and indicated that I related most to the ESFJ profile. After hearing Dr. MacKenzie, and reading her book, I now think I relate more to the ISFJ profile. She shared that she was "struck by the parallels between the features of Introversion-Sensing-Thinking-Judging (ISTJ) type and the key characteristics of autism". She also shared that she has observed that children with autism seem to most frequently show Musical-Rhythmic, Visual-Spatial, Verbal-Linguistic or Bodily-Kinesthetic strengths in their learning preferences (less frequently Logical-Mathematical, Interpersonal or Intrapersonal preferences). Based on reading her definitions, I think I learn more easily via Verbal-Linguistic, Bodily-Kinesthetic and Intrapersonal approaches, as she suggested focus on a person’s top three. As my profile seems to align pretty closely with her suggested profile for people with ASD, I think it makes sense that I can easily feel empathy for people labeled as having ASD. I think this profile also aligns pretty closely to describe our son, now labeled with Asperger’s Syndrome and ADHD (forms of ASD).
As a person with a preference for Introversion, I find that I need quiet time, away from other people, to take in and reflect upon information that I need to learn. I am not the sort of person that can sit in a classroom and just listen to someone speak and then easily recall what they say. I generally cannot easily learn new information while someone is looking over my shoulder, but prefer to take information away with me to read and write on my own. As I have observed our son’s behaviour when sitting next to other people, compared to when he is able to go off by himself to work on something, I have certainly observed that he seems to be more easily able to learn when other people are not close. He can work well with just one person near him, as long as he knows the person well. Therefore, he seems to have a learning preference for Introversion as well. In contrast, a person with a preference for Extraversion tends to prefer to speak out loud to other people in order to learn easily.
With a learning preference for Sensing, I tend to learn best when I can use my senses. I prefer to watch someone perform a task before trying it myself. I tend to take a detail-by-detail approach to tasks, before noticing the bigger picture, preferring to understand the steps to complete a task before taking on the task, to know that there will be a tangible result at the end. I also see this in our son, as he wishes to really understand all the rules of a game or assignment, to know the steps to get done and that he will do a task very well, before attempting to even try. In contrast, a person with an Intuiting preference may see the bigger picture first, and be much less interested in the details of a task.
I tend to value harmony and unity among people I am with, as a person with a preference for Feeling. In contrast, I think our son has a preference for Thinking. He often comes across as much more blunt and to the point. People often tell us that our son certainly makes it known what he thinks, while I’m often told that I need to stop worrying so much about what people think and make a decision already. Our son still cares what people think and feel, but focuses more on facts and rules.
I most certainly have a preference for finishing when I decide I need to learn something. It really bothers me when I have a list of topics piling up that I wish to understand better and cannot find time to learn. This seems to translate to strength in learning via Judging. In contrast, a person with a Perceiving preference may be much less bothered by such a situation, quite happy to keep options open and with little concern for whether or not there is structure, and may simply begin to get bored as a task proceeds, as the work becomes less challenging. I tend to get satisfaction from knowing that I’ve overcome the challenge in a task, in knowing that I have mastered information. I think our son also prefers to finish what he starts, especially when he’s learning to play a new game… I observe that he has a very hard time getting away from a game when he decides he wants to master it. He’s already finished the full “Skylanders” game, and many others, and tells us in great detail about all the things he’s learned by playing “Minecraft”! I tend to not want to get involved with video games, perhaps because I do not tend to do well playing them and do not like it that I seem to be unable to complete them.
I think the fact that I like to write about what I learn demonstrates very well that I have a preference for Verbal-Linguistic learning. The fact that I like to write by hand in point form when I want to remember something, and then walk around and read what I’ve written, I suppose demonstrates my preference for Bodily-Kinesthetic learning. As I find myself very interested in raising my awareness about myself, to have a deeper understanding of my own strengths, this seems to indicate that I also have a preference for Intrapersonal learning. I think Interpersonal learning is also a reasonable preference for me, as I also find I’m interested in understanding other people’s strengths, so that I can empathize with other people I interact with regularly as well. In contrast, I do not think that I have Musical-Rhythmic strengths, as I have not found it easy to learn to play piano. In comparison, my son labeled with ASD seems to learn piano easily (though he’s given up lessons due to challenges with the written work at the moment). I think our son may have Logical-Mathematical learning strengths as well, as I’ve observed him quickly complete games that I viewed as requiring some pretty advanced logic skills, such as “World of Goo”. I’m not entirely sure where his learning preferences are yet. He seems to like graphs in Math, so I suppose he may have a Visual-Spatial preference.
Dr. MacKenzie’s learning preferences and strengths approach involves paying attention to a person’s learning preferences, and choosing teaching methods to align with those preferences. Children will learn much more easily if you use approaches that they prefer, rather than try to force the children to learn in ways they do not prefer. The book gives many examples of how to teach with learning preferences in mind. I think much of what she says makes a lot of sense. Much to learn yet from this book, I think!
I’ve also been reading and learning about Sensory Integration Disorder, another proposed explanation for our son’s behaviour. It’s been suggested that some exercises for his Vestibular and Proprioceptive systems may help him. Much more I need to learn about that, to know if that makes sense! As I learn more, I may share about that another day :-)
Reader Comments (1)
Hi Christine
I'm with you that there are more people with asperger with introversion, and probably more people with ADHD with extroversion. It's probably significant, but the other types are there too.
I'm INTJ - http://jlottosen.wordpress.com/2012/02/04/my-strengths/
MBTI is a tool that can act as a key to understanding - as you write very well. But it's just a model, failable and not the real thing.
Oh, by the way this will probably interest him:
http://legocuusoo.posterous.com/announcing-lego-minecraft-micro-world-the-thi
Thursday, October 4, 2012 at 10:12PM
As I no longer seem to find time to post in this blog, it's costing me money, and I've not received an indication of anyone reading this in quite a long time, I've decided it's time to retire it.
I want to say a very sincere thank you to all who have followed my posts. For me, this blog was very helpful to move forward. We are doing much better now than when I started sharing my story, though we know we will have many challenges ahead (as all of us do).
If you wish to stay in touch, please locate me in FaceBook. I now tend to post my thoughts as short "tweets" there instead.
Someday, when I have some "free time", perhaps I will endeavour to write articles for a magazine, as some have suggested, or perhaps write a book. Not likely soon though :-)
Many thanks to everyone!
· Interesting Stuff to Show Kids!
These are random links to "interesting stuff" we can show our kids:
Teachers can create an online, virtual classroom, and work together from globally distributed locations.
This is a robotic system. The site offers free software and programming instructions, and Lego parts for devices. There is a 3-D modeling program that lets you design a virtual toy, using as many bricks as you want, and then you and others can order you
