Woke this morning at 4 am, feeling rather excited. Have been a member of Autism Pictou County for several years now, yet never managed to get to any of the conferences this group has hosted, but this was the day I would go. So glad I made time for this!
At 8 am, attended the annual community pancake breakfast, hosted by Scotsburn United Church. This is always a treat. We had pancakes, sausage, baked beans, blueberries, and whipped cream, tea, and most important had the opportunity to connect with some friends. The atmosphere of fiddle music had me gratefully in a cheerful mood as I made my way to the conference at the nearby Smith Rock Chalets.
A LOT of interesting information was then shared in the next 7 hours! Will focus here on what I most took note of (I have PAGES of notes). My village is growing! You know it takes a village...
The first presentation was by Autism Nova Scotia. Learned about the "Choosing Now: Investing in Nova Scotians living with Autism" report. Among the positive aspects mentioned, the government of Nova Scotia is investing $300,000 annually to help establish resource centers. One such center is going to be established in Pictou County! Also, learned about "Better Together: The Case for Canadian Autism Partnership". The Canadian Autism Spectrum Disorder Association (CASDA), Autism Speaks Canada, and Autism Canada are three National organizations all working toward change. Rather disappointed to hear that more support is being given to ANS by the government of New Brunswick than by the government of Nova Scotia. Hopefully, this report will be part of a more positive change.
Autism Nova Scotia offers a LOT of support programs. Honestly, it was very surprising to me just how much there is that I had no clue about. The creativity in the Autistics Aloud newsletter was something special shared. Have a look and note the use of colour and the positive information in this, written by people diagnosed with autism. Note they have an "Autism Aviators" program as well. They can provide a social story book, special travel assistance, and even a tour of the airport before a trip, to help a person with autism feel comfortable before first day of a flight. Sounds like a great program for our family to take advantage of, as this week we FINALLY all managed to finish the process of getting passports and we're planning a trip!
A few weeks ago, as one of our sons was reading "Stock Investing for Canadians for Dummies", and expressing an interest in maybe starting a business, we decided to check out the "Junior Achievement Company Program" advertised to Grade 10 students at his school. We attended a first meeting, where about 20 other kids showed up and two kind volunteer leaders attempted to get the kids inspired about starting a business together. They were quite successful with all in the room, except sadly our boy who spent the evening feeling overwhelmed, asking me to take him home. He then came home and proceeded to spend much of his "free" time in the next week and since "finger knitting", a procedure we are thankful he learned during elementary school... He made notes, just as the leader had described - outlining time it would take to make a bracelet, cost to make one, and so on, with dreams of one day starting a business to sell his bracelets, but he also expressed he did not want to go back to that program. Seems he heard more than I thought that night! Today, I learned CommunityWorks Canada is an alternative! An item on the to-do list to learn more about for sure!
Still more was shared in this first session... The PEERS program is something our son's resource teacher is already starting to introduce, "clinically proven to significantly improve social skills and social interactions among teens with autism spectrum disorder", and in fact many programs to support teens in transition from high school are available. Happy to know this! PEERS and TRAACE could actually become programs in school worth credit as well - We are encouraged to advocate for the addition of TRAACE in our schools, which seems like a great idea to support!
Phew! Time for a break. Reconnected with a friend, and had the pleasure of new introduction to Janet Brand-Balignasay, Student Services Consultant for Pictou County (Celtic Family) schools. Would learn later in the day about her great intentions and steps she has made to help our kids.
A few years ago, Autism Pictou County started a swimming program. At that time, our son ended up a bit overwhelmed as he joined the swim team. He kept swimming, on his own, but not as part of this group.
Next up was Dr. Amanda F. Casey, from St. Francis Xavier University. She has been establishing a program called MAX - Motor Activity with St. FX. This is where I learned the swimming program has evolved quite a lot since we checked it out a few years ago. In partnership with Autism Pictou County, Dr. Casey and her students have evolved this program to be very different, and it sounds like also very effective! They talked about their understanding of Sensory Processing Disorder, affecting about 16% of people, and about how it's important to understand there is a spectrum of solutions - and they noted The ASPECTSS of Architecture for Autism, as described by Magda Mostafa, as a key source of information driving how they approach this now very vibrant program for our community. Think it's time to again check out this program, which now includes siblings as well!
Dr. Casey mentioned that people with SPD may experience a neurological "traffic jam". Are you there yet? This is a LOT of information in a single day.
Reflected about the past few weeks as well, where I learned that in a Career Development class in school our son was struggling to complete the assigned task of preparing a resume. His teacher truly wants him to do well and has been trying all sorts of methods to make this a success. Today, was in for a treat after lunch, and the chocolate dessert at lunch was pretty great, too! At this point in the day, it was 2 pm, and thought I was going to be unable to focus for the rest of the day. Pleasure to learn I was wrong...
Summer Street Industries was next on the agenda. Enter Dorothy Doyle, another great contact for our family! It was VERY reassuring to learn about all the great support in our community that exists for people after high school. SSI has over 200 clients and is supported by over 60 employers in our community. Knew they were a great organization, but really did not know just how far they reached into helping people here! They offer intensively client-focused and client-directed programs, to point where the clients decide what the programs will be and even who will be hired to provide them! So MANY programs!
Dorothy spent some time advising us as well, about how we can help our kids get ready for entry into Summer Street, if we choose that path. She described the importance of creating a Portfolio for our kids. Had heard about these before, but more for "neurotypical" people - more in the form that the school has been trying to get our son to create. (When a kid is asked to write down external activities, you come up with one, and the kid insists he did not even start the Chess Club - though he sort of did from the point of view of adults involved - and refuses to write that down because he insists the teacher really did that.. you rather get stuck writing a traditional resume!) Anyway, now I have a different format that we can try to put together. Awesome! Perhaps another challenge for our teenager is resolved!
Portfolio format includes:
- a page with a picture and/or words about an objective (e.g. want to learn music - pix of a musical note)
- a page about strengths (e.g. if he helps someone, write it down right away!)
- a page about what the person wants (e.g. Driver's license, learn to cook)
- pages capturing life experiences (any certificates received, etc.)
- pages of assessments done that help understanding of the person's skills
- pages about interests - pictures of artwork, papers the person is proud of, etc.
Neat also was Dorothy's description of how she teaches adults about WHMIS. Those of you in DXC Technology with me may recall training videos we recently watched about this. Her method is MUCH more interesting, and probably more effective as well! She has a method involving showing her fingers to remember the 7 parts of a label... holds up her thumb (label has a name), holds out her pointer finger (shape is like a gun) - 2nd part of label is about dangers, adds here middle finger (now it's a W) - the label has ... Wish I could remember the rest. She had interesting ways to teach about safety, and we learned that recently the clients were engaged and did research - taught her about why eCigs blow up (when they interact with a quarter in your pocket!)... Strikes me as a very inspiring teacher. We want more of people like her in all of our lives!
Another recommendation was to create a one-pager. On this page, include:
- a picture of the person
- a list of what the individual enjoys
- a list of what other people admire about the person
- a list of what is most important to the person
- ideas about how to support the person
This will help support workers. Great idea!
Dorothy closed with a recommendation to check out a series called "Born this Way" on A&E, something else on the to-do list!
Break time! More food and good conversation!
This brought us to about 3:30 pm, where we got to really meet Janet! She is our Student Services Consultant, as mentioned earlier. At this point, there are about 100 autistic children in Pictou County, and she supports them as well as ALL other children in schools requiring services, including those who are both challenged and those who are gifted. That is one BIG job for her and her VERY small team! She mentioned the PEERS program is starting, but not comprehensive as intended, and that some schools have implemented TRAACE, but not here! She encouraged us to advocate for this - to try to get funding so that staff can be hired to run these key programs for our kids. She shared about the challenges with getting enough Education Assistants for our kids, most importantly with the right skills - they are NOT hired with "education" training, but only really for non-violent crisis intervention and to help with severe behaviour. More is needed! She shared about the small team she has to work with - ONE behaviour specialist, ONE autism consultant, ONE Program Planning and Autism lead, and then some Speech Language Pathologists and School Psychologists, for ALL those children! No wonder many of us feel under-supported in school... She became noticeably emotional as she shared the challenges - We appreciated that she clearly just wants what we all want, and she needs our support to advocate for improvements!
At this point, it was time to wrap up. There was some sharing of stories of challenge from parents and professionals in the room. Things became rather emotional, as we all have gone through a lot together and know this will continue. Again, good to know we are not alone.
Left the day with so MANY ideas. The to-do list now is very long. Want to support related to all of the above (but first I need some rest)! Even want to help spackle and paint the new office that is being opened, so we can save $2400 in rent (first 2 months) by doing the work for our community ourselves and use those funds for advocacy and setup of programs like CommunityWorks instead!
To all those supporting Autism Pictou County, and especially to Allison and Rachel - organizers of this conference, a huge THANK YOU, THANK YOU, THANK YOU!
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