Friday, May 19, 2006

Along for the Ride

I couldn't wait to become a mother. At 24, I was ready to have that little bundle to love and when Jake arrived, I cried for joy. He was mine. I finally, was a Mom.

Jake was a happy little person, and as easy to raise as most kids are. It wasn't until he entered school that our perfect little world began to fall apart and was fraught with joy, despair, elation, and frustration. In the past 11 years as we have journeyed through three moves, the loss of Hub's job and his trek back to university, and almost losing Hubs himself to a rare illness, we were also introduced to the world of advocating for Jake with the school system. It all began in grade one. Jake couldn't print like the other kids, nor did he understand the math. However he did completely understand what was going on and instead would tour through the room, helping the other children with their work but never writing anything down himself. (which, looking back is SO Jake-he does everything orally) The teacher didn't like this, and saw it immediately as 'behavior'. Jake began to feel that he didn't belong. So as a 5 year old will do, he decided that rather then be humiliated, he would prefer to be kicked out of the classroom.

Of course the teacher was only too happy to comply. I think Jake spent much of grade one in the hall.

It wasn't ever Jake who caused us despair. He was, and has always been, such a source of joy and love in our lives. What bred the despair was a system that is all too quick to label children and fit them into neat little boxes...only Jake didn't completely fit into any box whatsoever. Jake, in all his enthusiastic glory, seemed to defy the system completely. Soon it became our job to protect him from those who appeared to want to help, but in the end only wanted our child to conform to what box they were trying to shove him into.

We began desperately trying to protect Jake from those who don't care about the him, but rather the label. The label that procured funding, or could be used to demand medication. The label that would remove the 'problem' and make things better solely for the professionals that were supposed to know how to work with kids like Jake . We never saw a problem; but rather a child whose zest for life was boundless, his curiousity never quenched, and his ability to love absolute. He is ours, and we love him just the way he is.

The list is endless. ADHD, Autism, Aspergers, Non Verbal Learning Disability, Sensory Integration Disorder, behavior problem...all were labels thrown at us with the hopes that something would stick, by unqualified and unscrupulous people. People who didn't really know Jake nor bothered to take the time to listen to us, or who surprisingly were strangers right off the street. Everyone and their dog had an opinion about Jake, and none of them, in the end, were right. Not one. We are just the parents, after all. It doesn't matter that between us Hubs and I have 45 years of working with mentally ill, emotionally disturbed, learning disabled, mentally and physically handicapped children. We are educated people who know what we are talking about, and besides that, Hubs is dyslexic himself. Advocating, for the first 5 years of Jake's school life, fell completely on deaf ears. Teachers blamed a 5 year old for not being able to print; a 6 year old wasn't fast enough for math drills and kept after school; a 7 year old (despite an assessment saying otherwise) was just "lazy", and an 8 year old who "isn't taking responsibility for his education."

I cannot even begin to tell you what this has all done to Jake. There were times where I found him curled up in a fetal position in the corner of his room under a blanket. Or the Easter where he wrapped his little body around us and begged with everything he had in him never to send him back to school. He slipped into depression and for awhile, we lost our enthusiastic, happy child. I can't even tell you what that's like; your child is missing, and when you look in their sad eyes you know that your child is in there somewhere, but you fear you'll never see them again. At one point I even almost lost all hope myself.

It's only been very recently that we have managed to get the old Jake back. Unfortunately, the entire experience has left scars that will be with him forever. He now struggles with generalized anxiety and some separation anxiety as well. The kid that couldn't wait to be rid of us so he could play at daycare, now is anxious to leave us to go to school. Not that I blame him, because Hubs and I have never completely trusted anyone else with Jake since.

Only recently did we also finally go to the top and get THE assessment to beat all assessments. The labels that have been stuck are, at long last, the right labels. Ones that work for Jake and don't just appease the professionals.

The first one?


It is especially difficult to convince people that your child is one that has different needs when they not only look perfectly typical, but are also intellectually gifted. Some don't believe it's even possible. However, the combination of challenges Jake faces every day make even the most seasoned psychiatrist shake their head.

Jake struggles with:

-Developmental Coordination Disorder (dyspraxia)-which causes sensory integration issues, makes motor tasks very difficult, and disrupts his attention and ability to plan and organize

-dyscalculia-math learning disability

-a disorder of written expression-which makes it hard for him to change thoughts to words, words to sentences, and then transfer that to paper

Add in that extraorinarily high IQ, and it presents a a pattern of strengths and weaknesses that resemble that of a roller coaster.

The roller coaster that has, and continues to be, our life. The life where one minute we are conducting high school science experiments with Jake, and the next we are in IEP meetings advocating. The high fives when a school provides the right accomodations and he soars, and the frustration when someone doesn't listen and the anxiety returns. We're the Momma and Papa Bears that will fight for Jake when we need to. It's been a ride, that's for sure.

You are more then welcome to join us.

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