Tag: autism

Difference making: I Can Bike

In 2004, we had somehow managed to get (and stay) pregnant during a conjugal visit while Dad was away at teacher’s college 3 hours north for the year.  We were paying rent on two different apartments, I was massively pregnant and leaving teaching for maternity leave, Dad was looking for a first-time teaching job and we needed to leave our cute apartment for something with onsite laundry.  When we first had our son, we were living in an apartment in the countryside above a 3-car garage.  In August it looked fantastic: 2 bedrooms, storage, parking and laundry, and peace and quiet.

By December, my son was all ready to meet those tummy-time goals but I was afraid to put him down on the freezing cold floor.  As anyone who has ever explored their abdominal core muscles will tell you, you need a soft but not too soft surface to be able to press into.  I couldn’t both warm up the floor area and provide those conditions so I truly believe that I didn’t give him enough floor time. These are the manic thoughts of a new mother.  Yet when he struggles now to do something at age 14, this lack of tummy-time is one of those things I still beat myself up about.  We moved into our first house a few months later.

When my son was about 3 years old, the staff at our publicly-subsidized childcare centre noticed some differences.  One of them was that he hid under the table with his hands over his ears during fire drills, rather than listening to the instructions about how to leave the room.  Another difference was that he was having a really hard time using scissors.  My thought was “Scissors!  I’ve never given my child scissors!  They’re sharp!  What could he possibly need to cut at the age of 3?”  Well, as a secondary educator of over 20 years that shows you what I know about preschool and primary curriculum.  Zero. Zilch. Bupkis.  Everything I’ve learned is through the eyes of a parent of a son with special needs.

One of the choices we made many years later was to live on a cul-de-sac with very little traffic. When viewing the house I could overlook all sorts of other problems with the house because I was imagining the safety and security that our son would have playing on that street.  It’s a sort of fortress to invite people into or keep bad things out.  In fact, other families come down to our end of the circle to learn how to rollerblade, or to jump on the snow pile or to learn how to bike.  Maybe all parents feel this way, but in a neighbourhood like ours, the kids growing up together, all seem to hit a lot of the same milestones together.  Except for our son.  It’s those goddamn milestones that separate us.

Blogger Andrea Haefele shared a post this week which included a video called Ian by TheCGBros which is award-winning for its animation.  Just take 10 minutes to watch so you can kind of get into the headspace of where I am today in writing this post.

Andrea’s post tackles the idea of an accessible playground which is working really well for her child, but how the culture of other families still needs to be adjusted.  So our friend Doug Peterson picked up this blog post and one of mine to talk about special education this week, and his guests picked up on a key theme right away: It’s not about the rocket ship (or playground or the cul-de sac) it’s about changing the culture.

To me what is so brilliant about the movie Ian is that the character tries multiple times to be that difference maker himself.  But not until his new friends experience what life is like on the other side of the fence, can they really understand the barriers that he is facing.

Likewise, the cul-de-sac couldn’t provide the answers for our son as he watched the other neighbourhood kids get their first vehicles: scooters, skateboards, and anything that involved being mobile at high speeds.  We got him a mountain bike.  We tried balancing and teaching, but sometimes the cul-de-sac feels like a fishbowl where all the neighbours can watch you try and fail.  So our son has balance issues, and anxiety about balance.  He couldn’t seem to feel comfortable enough with his feet at a low enough seat level to touch the ground and at the same time high enough to give him room to pedal.  My rheumatoid arthritis means I just can’t hang on to the back of the bike very long without pain so our spurts of running with me hanging onto the back for stability were very short.  He was crying, I was crying.  It sucked ass.

We got him a Plasmacar.  Very cool, and easy to use right away.  He was zooming down the driveway into the circle immediately.   It just wasn’t very fast….very juvenile. I mean look at the age of the kids in these promo pictures.  The neighbourhood kids on bikes younger and older than my son soon were even further apart in cool points.

An important parenting lesson I’ve learned: sometimes you just need to farm out the teaching to other teachers.  He clings to me and cries and then that breaks my heart and I just enable the clinging.  One of the best things that one of our first caregivers taught me: just let him go as if putting him into the arms of someone else was the most natural thing ever.  Prolonging the handing over made it worse to say good-bye, for both of us, than ever.   I have always been REALLY choosy about who babysat or got to work with my son.  If you’re on the shortlist, you know you’ve gone through rigorous scrutiny to be there.

Insert: Kidsability.  I’ve ranted about the distance we travel for quality programming for my son before but there are sometimes when it is just worth it.  So I committed that I would join my son in my running shoes and drive the distance to the program every day  and not take off during the 3 hours to do errands for a week so that he could learn how to ride a bike in their program.  As usual when we arrived, I am immediately struck by how easy my life is.  There are parents and children with way more challenges than we have.  It’s continually humbling to work with and near children with developmental challenges.  I love it.

We arrived at the designated arena and a Kidsability staff member, an I Can Bike staff person and a young, athletic volunteer were assigned to us.  That’s a ratio of 3 helpful people to 1 child…and then as I hoped/feared, I was asked to watch from behind the plexiglass.  Being peripheral is both liberating and exhausting.  I can see him, he can see me, but the distance is enough that he realizes that he has to meet the challenge, and I realize that I need to respect the process and not ‘be helpful/in the way’.  Oh yeah, they also loaned him this bike and had a full-time technical staff that were constantly making adjustments to the vehicles to individualize them for the kids.  Keys to making it work: upright body position (not mountain bike), BMX-style handles so that hands are comfortably able to grip, and the there are no brakes on here yet….we eventually went to hand brakes.  You can’t just walk into Canadian Tire and buy this model off the rack.

This is Day 1.  See what they do here?  They test out a back wheel roller which is going to slow down the bike, stabilize it and give him some immediate confidence.  Teaching reflection point: how many times do we offer our students an opportunity to really shine before increasing the difficulty?  My son in this picture is showing you that he feels safe, and cool and confident.  The I Can Bike program makes adjustments to that particular bike two or three times in a session.  The person in the red shirt is a volunteer that ran with his bike for the full 3 hours.  He had a fresh volunteer the full time.

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Here is day 3.  I just want to repeat that for emphasis:  Day 3.  In about 7 hours, this program has taught my kid to ride a real bike.  My post of that day says this:  “What did you today? I watched my kid ride a bike for the first time!!! Thanks Kidsability and I Can Shine.”  I’m sweaty, I’m bawling my eyes out, I’m sitting behind the plexiglass, and there is a Kidsability person near me to hold my hand and I am so glad that I didn’t go grocery-shopping and miss this moment.  He’s shouting: “I found my balance!”

Fortunately for our son, Dad is a mechanical monster so he went to the local scrap heap with a former bike-crazy student and sourced a comfortable frame, BMX-style handlebars, painted it colours like Ironman for cool points, and bought a squishy seat.  Since then we’ve always modified for hand brakes.  That’s the ticket.  Our kid has grown up in the neighbourhood with the rest of them riding bikes.

So if you want to make a difference: give a kid some wheels. Any way you need to.

Useful links:

Our program provider Kidsability brings in this program annually: https://www.kidsability.ca/icanbike

If you want to watch more joyful videos of

https://www.facebook.com/KidsAbility/

If you want to bring I Can Bike to a program near you:

https://icanshine.org/

Homework for Mom

Max started grade 7 yesterday and he came home with a sealed envelope for me.  In it was a piece of paper with just one sentence on it:

Homework Assignment #1

In a million words or less, tell me about your child.

…and I knew it was going to be a good year.

Max will be 12 in a month and his feet are already bigger than mine.  His most identifying trait is his face full of freckles.  He and I have daily discussions about the invention that he’s going to make to save humanity. I’d be happy if he would just invent an app that would identify plants, but he always puts this grand pressure on himself. Every one of his passions involves science…plants, animals (he calls himself the animal whisperer), how the world is made…this summer’s favourite book was all about phobias. This is why we have daily conflict during the school year about catching up in math…because I’d like him to pursue whatever path he wants.  He doesn’t see the correlation yet between doing work today and how it will affect his choices later…but who does at age 11?  Still at the end of the day, he does seem totally worn out and I hate to see him cry. Last night he even offered to learn about Canadian history 3 times a week through Kayak magazine rather than math  So we’ll put math studying on the back burner for a couple more weeks.

Max swims once a week and is good enough now that I feel that I can watch from the side sometimes.  He loves the water, and sand and snow…anything tactile.  He loves building and has a table dedicated to Lego.  He has inventions in tape and paper and cardboard all over the house, so much so that we painted his room into a science lab last summer.  Of course one of his favourite games is Minecraft and I catch him watching Minecraft parodies on YouTube all the time.  He loves to laugh and has a great sense of humour.  He loves laughing so much that he can get stuck on a joke for days repeating it over and over to himself and then having this huge fake laugh-track laugh.

He has both an eidetic memory and also can’t remember where he put his shoes 30 seconds after taking them off.  He forgets to eat, forgets to drink, and forgets to sleep so routine is a big part of our life during the school year.  During the summertime, I invite him to cook for himself and he has a toaster oven that he uses almost exclusively for his various kitchen creations usually involving toasted cheese.  He only goes to bed because he’d rather not be lonely staying up by himself.  We had a good time on the weekend because at an old cottage we visited, they had a stack of retro comic books.  We really enjoyed looking at the old ads for 1990s video games.  He said to me the other day that he wishes that he had the technology from the 80s, like me,  because it was so simple…he likes the dials and tubes and buttons.

He gets attached to the dialogue of movies, tv shows and the stories that he reads.  There seems to be an uncertain veil between how those worlds are separated from ours, in Max’s mind, as he will often bring things that I haven’t read or seen into our conversations assuming that I’ll enjoy hearing about them just as much.  In fact, part of Max’s diagnosis is called hyperlexia, an attachment to letters.  In fact, I swear that he was reading before he could walk…that would place reading somewhere between 12 and 17 months of age…and those first words were the things we could read along the street on our way to the post office…”Open” “Closed” “Stop” “Canada Post”.  He tricked us all into thinking that language was a gift so I first enrolled him in French Immersion at the JK entry point in our board.  With a first year teacher and my inexperience as a parent, we didn’t realize that his language was regressing until January of that year and quickly moved him to the mainstream program.  The trick about Max is that although he can pronounce words easily and memorize their spelling, he takes longer to comprehend their meaning and even longer to communicate his understanding of what he reads.

It will be quite an adventure seeing what the year brings as the scope of what he’s learning broadens.  I’m looking forward to hearing about new friends as his school is a hub for the neighbouring communities for grades 7 and 8, so his peer group has just tripled.  Max has no trouble making friends but prefers to play alone mostly and can become really worn out in social situations. I’m hoping to engage him in a monthly teen group at Kerry’s Place in Guelph this year, where he has enjoyed a one week camp each summer. Still, it’s good for him because if he’s going to solve humanity’s problems with one invention, he needs to get to know humans.

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