I went to Grandma and Grandpa’s house to swim. When I got out of the pool I used a towel to dry me off. I like to push Dad on the bum then Dad jumps in the pool. Dad does a cannonball. I went to buy strawbairese with my Daddy. The strawbairse look good. They taste yummy. I was going to play in the sprinkler. I was going to get wet. I was going to have a drink of water from the sprinkler. Daddy turned on the sprinkler. It was a great day.
Jon
Because of Jon’s disabilities it’s sometimes hard for people to figure out how relate to or talk with him. This is a very informative and detailed list that Jon’s teacher Tami gave us to educate acquaintances, friends and family. The first five tips are the most important, and specific to communicating with Jon; the rest of them are also important, but are more general parenting/babysitting/teaching pointers. A big, heartfelt thanks to Tami for putting these together!
Andy at the RASC Public Observing night at the Ontario Science Centre
Congrats to regular commenter Andy (aiabx) Beaton, who just won the Royal Astronomical Society of Canada’s Bertram J Topham Observer of the Year award for his variable star and public education work. Yay Andy!
So Jon has been somewhat emotional these days. He’s had several tantrums of late: explosive, sometimes physical, and very intense.
The weird thing about them is that he was turning on a dime. After the Sunday one, he turned around and did 16 pages of tough reading homework; cheerfully, anger completely evaporated.
Now, Jon has had tantrums before, and even waves of tantrums, but that was years ago. And all through all of them, none of his teachers had ever seen anything; they could barely believe that such an angel would ever do this.
This included Tami—until Monday, when Jon decided to try his new attitude at school. To sum up: demanding and surly, then kind of weepy when challenged on what was going on and why he was doing this.
He has been under a heavy workload at school. And there was the humidity. And he’s going through a new social phase, so he may be testing the waters. But we suspect there’s something else too.
Tami mentioned that it seemed “almost hormonal”, and the EA’s have noticed some other things that lead us to a new fact. New to us anyway, and we like facts. So how is it that we never learned—and no one ever told us—that it’s common for kids with CP to hit puberty early?
When I heard this interesting fact, I nonchalantly googled “cerebral palsy early onset +puberty”, thinking maybe one scientist had a study or two. 42,100 returns. Oh crap.
It’s called precocious puberty. (Of course it is.) Common in kids with brain injury, including kids with autism and FAS. For the boys, it tends to start early and end at the usual time, and the likelihood is inversely proportional to the amount of body fat. Oh craaap.
Looks like the future is now. With more coming soon. Anyone got some raw meat and a chair?
Jon sure loves his Spyro the Dragon video games! In the “Sunny Flight” level Daddy does the steering while Jon mans the gun. And Jon was showing Bachan how to get a dragon, not the other way around. —L)
After the bus goes away like this
voooooooooooooooooooooooooooooooooooommmmmmmmmmmmmmmmmm I do some reading. After I do some reading I get some play station. I do spyro one. In spyro one Dad goes to Sunny Flight. In Sunny Flight Dad gets a train. Dad gets another train. Batchin showed me how I get a dragon. I do Spyro two. In Spyro two I go to Metropolis. I get the ox. I love going to the first elevator. I am about to go to the next elevator. I’m about to go get the space ships.
Jon
From what I can see, one of the common pitfalls of parenting a special needs kid is despair. There’s no explaining how draining it can be at times. I can’t know for a fact, but I suspect that parents of regular, store-bought kids don’t have as many moments where you fall into a little mental “What is to become of us?” cell.
Autism’s Parent Trap is a thoughtful article by Cammie McGovern in the New York Times that was spawned from a truly tragic subject: Three recent cases of autistic children murdered by their parents. Essentially, they died in the wake of parental frustration borne of doing everything they could and not getting much progress despite their efforts.
The article hits some poignant beats for us. Jon’s isn’t autistic—his challenges stem from physiological damage and the resultant developmental delay—but some of his behaviours are not dissimilar. We see a lot of progress, but much of it is gradual: socialization is slow to root, some aspects of math, like simple addtion and subtraction, aren’t rooting much at all. Toileting for #1 is pretty close to fully ingrained; for #2 it just does not seem to register.
The physical aspect of the cerebral palsy reminded us from six months on that there’s no “cure”. We knew we were striving for Jon to be the best he could be, given what he could work with. (To quote Clarence, cradling the infant Jon, “We’ll make him the coolest little guy with cerebral palsy ever.”*) We’ve come very, very far. Still, there are days.
Since the Times won’t keep the full text up forever, I’m going to pull a quote or two from Cammie McGovern:
I don’t mean to sound pessimistic about the prospects for autistic children. On the contrary, I see greater optimism in delivering a more realistic message to families: Children are not cured, but they do get better.
And better can be remarkable… I remember thinking maybe we’d laugh someday at the lengths we went to when we were teaching him language — the flashcards, the drills, the repetitions. Now he’s 10 and talking at last in his own quirky ways, and we don’t laugh about the drills (though we laugh about plenty of other things). Language is a victory. So is connection and purposeful play. So are the simpler things: a full night’s sleep, a tantrum-free day.
Parents working toward these goals will one day be surprised and delighted by their children’s funny new obsessions, odd fixations, and tentative but extraordinary connections with other children. Being more realistic from the start might make it possible to enjoy the journey and to see it for what it is: helping a child who will always function differently to communicate better and feel less frustrated. To aim for full recovery — for the person your child might have been without autism — is to enter a dangerous emotional landscape.
Hear, hear. One thing we have learned from Jon is that the fancifiul “What If” is a painful crock. There is no point in considering what could have been. You’ll simply be consumed by grief rooted in a fiction.
Play the cards you are dealt. Work with what you’ve got. And take joy in the little things.
*Given his father, this wasn’t going to happen easily.
(This is the text of an email he sent to his teacher Tami right after he saw the movie Cars)
I watched Cars. I didn’t re wind the movie because It was in the theaters. I was eating pop corn and I was drinking pop and I was having a chocolate bar. I saw tralers. I saw a short called One Man Band. I will go see Cars again soon.
Love Jon