Thursday, December 30, 2010
As I write this, I am trying to remember if I've exceeded the maximum daily dose of Advil Cold and Flu... and if I have, how am I going to get through the rest of the day?!?! The flu has made its way leisurely through the entire family starting the week before Christmas and not letting up on the kids until now, ending with my husband and I this week. Simon lost 10 pounds in 5 days.
I'm retreating back to my bed and Kleenex Lotion tissues, but if you'd like to stop by and check out my latest post at Hartley's Life with 3 Boys you can find it here. It's about that old saying: Love Means....
Wishing everyone a very Happy New Year! I'll see you all back here in 2011!
Sunday, December 12, 2010
Not long ago I wrote about the many hopes and fears I have for inclusive education. I wasn’t sure that Simon’s school would be able to successfully achieve the kind of inclusivity he needs, in any kind of reasonable time frame. I had a gut feeling that we would be looking for a new school before Christmas... and here we are.
There are so many things Simon’s current school just can’t see: they don’t see the comfortable, relaxed, well-regulated little boy I discovered during our time homeschooling last year; they don’t see the stark contrast between that happy child and the frustrated, angry little boy we now have. In just over 3 months, public school has - despite their best intentions - brought back the meltdowns, yelling, self-loathing, and new OCD behaviours into our home.
No one can call that successful inclusion.
For kids like Simon, with significant sensory processing challenges, I’m not convinced you can ever have successful, meaningful inclusion with class sizes that are allowed to reach 30+. It seems so painfully clear: inclusive education shines a spotlight on the failures of the system for all children – because while you may not see typical kids melting down as the result of overstuffed classrooms, you also won’t see them learning to their full potential either.
There was a story on the local news here not long ago, triggered by the release of a new book on public school inclusion. The book has ties to a powerful conservative think-tank, which vehemently opposed inslusive classrooms years ago when the legislation first passed.
The two… guys…. (most respectful term they’ll get from me) who wrote the book were interviewed for the news story, and they used their 15 minutes of fame (or 15 seconds, in this case) to state that inclusive schooling doesn’t work because – essentially – “the bottom” drags down “the top”.
Yup, you can guess where our kids are in that equation.
I was relieved that the story also included plenty of counter-points from special educators on the values that ALL kids learn from having a diverse classroom. But still. There it was. Never mind that my son’s IQ scores beat 90% of the other kids in his class. He’s still left down there, at the bottom, with all the other kids who's unique gifts don’t fit this middle-of-the-road public school mold.
That interview was a bit of a breaking point for me. Combined with the fact that Simon's coping skills and emotional health are getting progressively worse with every school day, I knew that this experiment had gone on long enough. While I will continue to speak out and work with organizations that support inclusive education, I know that Simon can’t wait for those changes. He needs an environment that works for him, and he needs it sooner than later.
And I think… hope… we have found it. Simon has been accepted to a highly respected, small private school here, a school created by a mother and father who – 15 years ago – couldn’t get the public school to understand how their son needed to learn. So they made a school that would.
Can we just pause a moment to imagine how much effort that would have taken – to make your own school? The red tape, the paperwork, the regulations, the financing… I’m exhausted and inspired all at once just thinking about it.
Simon’s class will have roughly 5 or so kids… and TWO specially trained teachers.
There are no bells or buzzers between classes. Teachers simply guide students from one lesson to the next, one subject to the next. There is a cafeteria – small, not loud – where he can stay to eat lunch with his friends. And after lunch – no recess requirement. Some kids need to run off their energy, but Simon – and many other kids on the spectrum – can get so wound up from freerange recess activity that it becomes impossible to calm them down once classes start. This has been one of Simon’s greatest challenges. At this school, each child does what works for them personally, so there is a “club” you can participate in after lunch, if recess just isn’t your thing.
Right now, Simon is a vibrating stress ball from the sensory overload and social demands of public school, so we’re going to give him time to decompress at home (homeschool) before starting his new school next fall.
I am full of hope, and hopefully, full of realistic expectations. I'm not expecting perfection from the new school. Just... an environment conducive to Simon's educational needs. We’ve had Simon out of public school for only a week, and already I see him transforming back into himself.
Perhaps most importantly, in a new school custom designed for different learners, Simon won’t constantly feel like he’s on the outside looking in. Or more specifically, like he’s at the bottom – looking up.
So raise your glass if you are wrong
In all the right ways
All my underdogs, we will never be, never be
Anything but loud
So if you're too school for cool (I mean...)
And you're treated like a fool (treated like a fool)
You could choose to let it go
We can always, we can always
party on our own...
Sunday, December 5, 2010
Today when I opened up my Internet Explorer to start my daily lap top addiction, I was confronted with a news story that takes us back to a profound tragedy - the kind that, when contemplated in too much detail, takes mothers and fathers to those dark, dark places we fear the most.
In a few days, one family on the beautiful east coast of Canada will mark a painful anniversary. They will begin their holidays without their little boy. And it's fair to say, that autism killed him.
James looks a lot like Simon. He was Simon's tender age of 7 when he wandered away from his family's home, and spent two days and two nights - TWO NIGHTS - in the frigid December woods, all alone.
Don't allow yourself to dwell too long on thoughts of what those long nights must have been like for such a young, vulnerable child. Don't imagine how cold he was without so much as a winter coat to keep him warm. Don't think too much about the elation his mother and father felt when he was found - only to watch him succumb the next day, his small body ravaged by extreme hypothermia. Those are the dark places that just hurt too much.
Stories like these shake us all to our core, but they are especially challenging for parents, self-advocates, and bloggers who endorse a perception of autism as a 'different way of being', rather than an affliction that needs to be cured. I count myself among them.
Simon is not a wanderer. And the tragedy of James does not change how I feel about my son's autism, or my passionate views on the need for the world to accept autism as a different way of being. But it does give me a good hard shove toward understanding why autism is such a charged topic, why there are so many families desperate for 'a cure'. And why, despite the fact that I do not share their perspective, I am compelled to respect it.
There are no easy answers in the alternate universe of autism. A neurological dimension that fascinates and confounds us, uplifts and enriches us, and breaks our heart all in the same day.
Please keep James' family, and all families who's love for an autistic child has been shattered by tragedy, in your hearts this holiday season.
Nature's first green is gold
Her hardest hue to hold.
Her early leaf's a flower;
But only so an hour.
Then leaf subsides to leaf.
So Eden sank to grief,
So dawn goes down to day.
Nothing gold can stay.