Notes from the Cookie Jar
http://cookienotes.blogspot.com/
 
“Scattered Mom”

“Scattered Mom” is a 30 something, west coast living, cookie baking, road tripping, key misplacing, perpetually lost blogger who can sniff out a Starbucks in a 50 mile radius.

Stick around..you’ll either pick up some great recipes or laugh at her forgetting where she parked the car. Again

Scattered Mom is a beautiful writer and shares insightful stories and information on Dyspraxia and Sensory Integration Issues as well as other aspects of her life.

Sample Post:

http://cookienotes.blogspot.com/2005/10/jakes-story.html

Wednesday, October 12, 2005
Jake’s Story
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 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 curiosity never quenched, and his ability to love absolute. He is ours, and we love him just the way he is.

The list of labels was endless. ADHD, Autism, Aspergers, Non Verbal Learning Disability, Sensory Integration Disorder, behavior problem…all were 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 never mattered 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 all of that did 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 almost lost all hope myself.

Slowly, after a move to another school district and finally finding some people who were willing to listen, we began to get the old Jake back. The road was long and hard, with many bumps along the way. Jake no longer trusted schools nor anyone associated with them and neither did we. There were many morning where anxiety would get the better of him, and I would have to literally peel a screaming child off of me and leave him at school, sobbing.

I’d then retreat to my car and sob myself. All I wanted; all I EVER wanted, was a happy, productive, normal school experience for Jake. It always seemed so elusive.

In 2006, we finally went to SunnyHill Health Center here in BC for an assessment. The gold seal, top of the line, can’t argue with that assessment. We’d had enough. This time, we were not going because we thought there was something additionally wrong with Jake, but instead to prove to a school system once and for all that the labels they had in mind were WRONG.

The results?

-Developmental Coordination Disorder (dyspraxia)-which causes sensory integration issues, makes motor tasks very difficult, problems with perception, and disrupts his attention and ability to plan and organize. Up until the diagnosis, I had never heard of this disorder.

-Math Learning Disability-Jake has most trouble with sequencing and patterns, although over time he has been able to compensate for this well and is presently functioning at grade level.

-Highly Intellectually Gifted-some people would think “great!” but gifted, in this case, creates such a huge degree of highs and lows in Jake’s profile that even the most seasoned psychologists shake their heads. He’s a kid that was teaching himself the Periodic Table of the Elements at age 7, knew all the inner workings of a v-8 engine at 6, and whose curiosity is exhausting to everyone around him.

Life was a huge roller coaster, but since the diagnosis, things have leveled out somewhat.

In June 2008 Jake was the recipient of a laptop loaned to us by SET-BC, and I can’t even begin to tell you the impact is has made in his life. The diagnosis also carries some weight with his teachers, who now see things through the “dyspraxic” lens instead of the “behavior” one. He still struggles with some issues; socially, kids don’t understand what dyspraxia is and accuse him of being lazy. He still has trouble with some life skills and organization, but we’re working on those. Since his diagnosis I’ve tried to learn more about dyspraxia through books and websites, but unfortunately there is precious little available on the subject. In a lot of ways, I feel like we’re in unchartered territory.

My reason for writing about our story is two fold. Firstly, I want to spread awareness about Developmental Co-ordination Disorder/Dyspraxia because if more people had known what it was, then maybe we would have been able to get Jake diagnosed and into therapy when he was young. I was so thrilled when Daniel Radcliffe came out and said that he is also dyspraxic, because now Jake can tell his friends that someone they admire and look up to has the exact same disability.

Secondly, it’s been a long, hard road to get here, full of things that I’d love to do over. Unfortunately, in life there are no “do overs”, but I can at least share my experiences for people who are at the beginning of their journey. The one thing I remember best from the dark days was feeling that I was alone. I know now that I’m not.

And neither are you.