Thursday, February 19, 2015

A different voice...

What an unexpected joy!
I turned the last page night, and I had to flip around the book for more! I had no idea what to expect from this book, except that it was popular and I had picked up the second book (The Rosie Effect) and started to thumb my way through it when I quickly realized that I should read the first book, first.
It is a quick, enjoyable, crisply written novel.  Although never expressly revealed, the protagonist likely has Asperger's syndrome and is quite high functioning.  Don has a refreshing voice, and there are some lovely character reveals along the way.  It is funny, and light-hearted, and at times, a little more serious.  Well worth a read.  I am not sure when I will read the next book - I think that Don would get old if you read too much of him all at once, however, don't take that as a detraction of this novel.
Speaking of Autism... I have read a few books now that deal with Autism... and it seems that the face of Autism we are getting through literature are those that could be diagnosed with Asperger syndrome (high functioning, highly intelligent, emotionally detached, etc) in books such as "Look me in the Eye" (another good book) or "The Curious Incident of the Dog in the Night" (didn't leave a huge impression for me).  Autism is a spectrum, and the kids I have interacted with that have autism are a different breed again from the portrait being portrayed in these novels.  I couldn't imagine the challenges for parents with low functioning autistic kids.  Like anything, you get used to your 'new normal', but the rewards are so different.  Communication would be so tough - especially with non-verbal or violent kids.  You would question so much of yourself as a parent, it is a tough road to walk.  I am learning interesting lessons in my own journey.  Having a son with a gross motor disability isn't always easy and our journey is different than that of other parents.  I am struggling a bit with the part that we participate in "teachable moments" to help people understand his type of cerebral palsy and why he walks different or why his balance is off, and that there are 3-4 other kids in his class with behavioural disabilities and it never gets spoken about.  In the classroom, these kids have EAs, but no one ever explains to the other kids why they hit, or run away out of the classroom, or why these kids get time in a "sensory room" and they don't. For me, there is a bit of a disconnect, especially even for younger kids, who frankly don't have the language or the experience to understand why they can't do all the things that these kids can (such as in a kindergarten classroom).  Yes, the other kids are accepting of these kids (they don't have a choice), however, they aren't also being given a lot of tools to understand rather than just "tolerate" the other kids and how their behaviours may or may not impact their own day.
I am developing some of my own personal theories about all of this - behavioural or psychological disabilities are in your face, and these people are a problem as a result.  They are hard to ignore, and can often be a safety concern.  A kid like my son, he may fall in to you, or get tired, or not move as fast, but otherwise he is easy to blend in. There is a lot of intervention therapy for autism, but for kids like my son that are high functioning gross motor, there isn't. With two working parents, and a kid that is a rock star, there is limited help, financially or otherwise.  There is such irony, it can choke a person at times.  For my son, the more physical interventions we do, they better his whole life path will be and the less interventions that will need to take place when he is older... but the supports just aren't there unless you can't feed, cloth, or bath yourself.  My son is part of a quiet group that isn't fully understood, well researched, or properly funded. I am not sure how best to voice this, and for now, I do take those teachable moments when they work out in his classrooms. I ask questions whenever I can, and I try to pull out whatever information I can to assist us. It has not been easy, and our greatest supports have been grassroots, and limited and more from the communities we have created or touch upon.

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