4/15/2010

A Journey: The Bright Boy, The Garden Girlies, Autism, and Letting Loose, Just a Little Bit (an update)

Bobby, 2003, first Special Olympics

This is my bright boy; he's got a smile that radiates out of him so that he often dazzles. His sisters are radiant, as well, gorgeous flowers; they are my garden girlies, named for two of my favorite flowers.

I've written what I think were positive pieces, one of which Autisable ran a couple weeks ago, and an interview with Cafemom that ParentDish picked up, so I have new visitors to this blog that, in my bright boy's own words, I wasn't quite expectin for. I've learned over the last year of blogging that without a doubt, you're going to run across people who are snake-bit mean, and there isn't anything you can do to prevent it; you have to ride it out. It's almost always worth it, as the good and decent people always outweigh the bad. Besides, the ones who are ugly almost always show they really didn't read what you wrote, so it makes it a bit of comic relief, thankfully.

I wrote this post a couple weeks back in response to one of them folks who likes to come around and instead of actually reading my words, reads what he wants to see and argue that fine strawman he builds instead of anything I've actually written. 
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When I look back on the last twenty years and some change, my bright boy and my time with him dominates. I had him young; in fact, this year marks the point where my life can be split cleanly in two: before the bright boy and after. There is a comfort, a deeply satisfying feel, to the realization that half (and more, with my husband) my life has been spent with two of the people I love most in the world, an abiding joy that I am, in fact, fortunate to live with and surrounded by my entire family (with my parents and brothers right here, as well).

I've held on tightly to my bright boy this last two decades and I love him with a fierceness that surprised me and scared me at times with its intensity. I've spent more time with him than I have anyone else, in sheer number of hours, and worked hard with him to help him learn, to help him grow, to give him the tools to be successful in life.

Even before his stroke at nine, I held on tightly, afraid for him, but after the stroke and finding out he has a blood clotting disorder, my grip tightened. I homeschooled him, which made us both happier people and allowed him to avoid bullying and for me to use my time with him more productively (before,  I was in the classroom with him trying to keep him contained and focused). I was terrified of injuries, anything that could cause clotting.


 
      Bobby, 2005, Justin Snow's Football Camp

We moved back home in the summer of 2002, and in 2003, needing some kind of socialization for the bright boy, we found the day program for the disabled that he now attends fulltime. Because of the diversity in ages (all the way through senior citizens), I was scared to let him go all day, so we started out meeting them at the bowling alley for two hours each week. I was pregnant with the littlest garden girlie, while the bigger garden girlie was not yet two. We sat and watched him bowl and interact, and I began to loosen my grip a little. That summer he attended their summer program and I drove him there and back each day, spending much of the time worrying; we'd been in each other's back pocket for so long, it was scary to let him go and navigate that world.

Since he started there, in 2003, going  part time during the school year and more often during the summers (and finally, two years ago, full-time year round), he's made lots of friends, and I've learned to let go in increments over the years. First field trips, Special Olympics Bowling, then Special Olympics Bocce, then track, which really scared me, and finally basketball, which terrified me most. In 2005, we finally loosened up enough to let him go to the short football camp that Justin Snow puts on for the disabled, even though that really scared me. He's gone every year since and had a blast.
Bobby 2006

The bright boy's grown, developed new skills, done better than we would have ever imagined, if not as well as we'd have hoped and wished for. But most important, he's happy, he's safe, and he's loved. He has friends, and even if he's rare to initiate, he'll talk for long hours on his cell phone with his friends from the day center when they call; his speech when he's talking to friends is rapid, no stuttering, no difficulty in expressing himself, so different than it is most of the time. You can tell how happy and excited he is. And slowly, but surely, we are both learning how to loosen the knot in my belly as he ventures out into the world. Each success he has, each new skill he achieves, lets me know that he will find a way to navigate the wider world out there beyond the day center. Perhaps he'll never do it independently, but I've had twenty years to adjust to that idea, to make the peace I needed to, in order to appreciate his every accomplishment while not bemoaning the milestones missed.



Bobby 2006 Special Olympics

There are people out there on teh dreaded curebie side who like to misrepresent what people who identify with the concept of neurodiversity believe. They like to cast parents who believe in respect for all individuals, who advocate acceptance, as do-nothings. I faced that, over at autisable, by an individual who has read enough of my blog to know the assertion he was making was point blank false: 

"Ms Wombles does not want to change her child. She wants her child to retain the deficits that result in a Pervasive Developmental Disorder.  I have no right to oppose her choice as strange as I may find it to be.  But more than that she wants to impose her choice on other parents seeking to find treatments and cures for their own children. Her position, if I can borrow an expression from Mr. Ne'eman is "morally reprehensible".  And it is indefensible.  All the kudos and backslaps she gets from the ND world will not alter those facts."


Bobby 2007, laughing at something I've said.


To write that I would want my child to retain the impairments that stand in the way of allowing him to achieve the things he wants to, well, it says a whole lot more about the writer's issues than it does mine.


The bright boy and me, Christmas 2008


I've been blessed to have my three wonderful children, issues and all. I wouldn't change them for all the world, but I will move heaven and earth to help them achieve their full potential, whatever that might be. And I will, with all the breath I have, work to make the world more accepting, more appreciative, and more accommodating for them and other children and adults like them. And I will do it despite those individuals who would try (and ultimately fail) to stand in my way of that by spewing rhetoric that is so absurdly false on the face of it that anyone reading such lies has no choice but to shake it off and laugh.
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To those readers who have wandered over from ParentDish, I welcome you. If I'd have know you were coming, I'd have put out the welcome mat. :-)





1 comment:

Shantel said...

This post just made me cry. Having aspbergers - I was not an easy child to raise. Thankfully, I grew up in a small farming town,a nd when I ran away - it was safe. My school was so small, that when I did get overwhelmed in class - I just left and took a break. I went through alo of verbal and physcial abuse from my Mother - becuase she just couldn't "fix" me. Those parents who just are so hell-bent on cures instead of encouragement, finding a cause or something to blame rather than putting their eneregy into helping thier child learn through nuturing and love. I just think they are wasting thier energy in the wrong places. Children with autism are EXTREMELY perceptive - when you are struggling with their Autism - you are struggling with THEM. You will make more progess with any help you are giving them, but nuturing, loving everything about them, and showing them how to love because you loved them. Not verbally bashed others about what is wrong with them. They know, and it hurts. You are doing such a great job withyour children, they will be blessed.