Wednesday, March 25, 2009

Our Quirky Baby

I haven't forgotten my Little Girl series. I'm coming back to that. But this post, though about Baby Boy, actually is going to tie in to Little Girl's story later. So bear with me. :)

Little Girl was the perfect baby. She was happy and content, bright and active, always met all her milestones right when she should, if not a little early, would go to anybody -- she was just wonderful. Baby Boy, on the other hand, is a different story.

Baby Boy was born with a problem. I actually knew before he was born that the chances were pretty good he was going to have it. Sensory integration disorder. When I graduated eleven years ago with a master's degree in speech-language pathology, I had never heard of it. That is unfathomable to me now. It's become a big buzzword in early intervention and with good reason: so many kids now suffer from it. Huge increases in recent years. In fact, most of the children I see have it to some degree or another.

I first heard of sensory integration at an inservice my very first day of teaching in the fall of 1998. I sat there in rapt attention as the symptoms of the disorder were described by the school occupational therapists. They were describing my life.

Thus began my obsession with neurology. I sought out more and more information on sensory integration and how to treat it in a desperate attempt to treat myself. And somehow I got really lucky and my haphazard self-treatments did some good; this was one huge factor in my personal journey to healing from depression, though not the only one.

Three years ago, coincidentally enough (God's timing is never a coincidence!), I attended a workshop on sensory integration disorders for early intervention, and it was the absolute best training I have ever attended in my life. Except for the one I flew to Florida to attend a month later from the same speaker because I was so impressed and eager to learn more, more, more. And the one I attended the next year when she returned, and the next.

I knew the day Baby Boy was born that he was indeed afflicted with this cursed disorder, which runs in our family and can be ultimately be traced back to my grandfather. (I never knew his family so I can't trace it back any farther than that.) And my suspicions were only confirmed in the weeks to come.

Poor Baby Boy had a rough first few months. He was allergic to absolutely everything, and covered in rashes and eczema as a result, and put on all sorts of medications to try and control the allergic reactions, which caused his beautiful head of thick dark hair to fall out. He cried and he cried and he cried. Nobody could hold him except his mother and even then he cried a lot. He was absolutely miserable (and so were his parents!)

Thanks to that training I attended, I had a whole notebook full of activities on how to treat an infant with sensory integration disorder, and I shared these with my brother and sister-in-law, and he gradually grew better and better. Were it not for those activities... had I never attended that conference just months before his birth... I am convinced Baby Boy was well on the road to autism.

But we saved him from that. Unfortunately, sometimes when you treat children young for problems, they make so much progress that they don't qualify for any special help... and yet without the help, they don't make the continued progress they should get. My big beef with the system, whose rules and regulations are invented by people who sit in an office and never see a child.

So when I had his parents contact early intervention to get Baby Boy some occupational therapy so he could have a trained specialist to continue to treat him instead of just me who had attended a conference or two on the subject, things didn't go well. He barely qualified for services, and he had to wait several months more for an occupational therapist, and then they'd only give him one visit a month. Like so much can be accomplished once a month... Then he ended up doing so well that they dismissed him entirely, saying he had no more sensory integration problems.

I knew better. He was definitely doing much better but I could still the subtleties. And now his speech wasn't developing properly, as a result. And now here he is, at two and a half, suffering from apraxia and "quirkiness".

Quirkiness? I don't know what else to call it. Except sensory integration disorder, which he supposedly no longer had. Baby Boy is quirky and there's just no other word to explain it. Most people would write it off -- others in my family even write it off.

"Look at how he runs... there's something just kind of awkward about the way he moves," I point out. My sister says, "Oh, he just runs like Dad. That's how Dad runs." Okay, to me it is a problem if a 2 year old boy runs like an overweight man in his 50s... but she just puts it off on genetics.

He eats french fries with a spoon and fruit snacks with a fork. He won't finger feed, everything must be eaten with a utensil. Not because he doesn't want to touch the food either -- he will actually pick up the french fry and put it on the spoon. Everything, once put on his plate, must remain that way on his plate. If he eats his mashed potatoes, you cannot turn his plate around so he can reach his green beans better. He will turn his plate right back to the position it started in.

He develops routines and rituals for everything, and does them the same way every time. If he enters my parents' home, he must go straight to the tv and turn on Wiggles. If he enters my grandmother's home, he heads for the Country Roads CD, puts it in the CD player and turns it on, pulls out a stool and sets a mat in front of it, and goes around and around in circles, climbing on the stool and jumping onto the mat. If I teach him a new game, he plays it with me. If someone else tries to play it with him, he'll return to me to play it. Everything must be done the same way with the same person in the same place.

See what I mean? Quirky. But I know it's just me seeing this stuff. And his parents are aware that something's not quite right, thank goodness; at least I don't have to fight to convince them something's wrong because that would be really awkward. Telling someone there's something wrong with their child is never fun, especially if they don't even see it...

So the past couple of weeks I have been on a mission to get occupational services back in place for Baby Boy. I've interviewed OTs in the area and selected someone I think will actually be able to help him. (My brother and sister-in-law are all for it, lest you think I'm being the pushy aunt. :) They want to do anything they can do to help him!) And she's aware that the issues are subtle and hopefully that means when she comes out to see him, she'll qualify him for services.

You may think Baby Boy is a really weird kid based on the things I'm saying, but if you saw him, you wouldn't. Most people would look at him and say, "I don't know what you're talking about, he looks fine to me. Maybe he doesn't talk quite as well as he should, but other than that, he's great."

And they'd be right. But with my background, and the knowledge I have, I see the subtle problems -- the problems that may not be so subtle on down the road. And I know that NOW is the time to fix them, not later after they've escalated into much bigger problems.

Well there happens to be a superb OT in the town I've just moved from that I wish could work with him but the distance is far too great. But I decided last week to pick her brain a bit, and out of that conversation came a book recommendation.

I ordered the book, received it in the mail yesterday, and thus the decision to post about Baby Boy's problems... and about Little Girl's problems too. Because this book has opened my eyes to the real problem underlying both of their issues: a brain imbalance.

And the solution to that problem. I hope!!

I will return after finishing the entire book for part four... the potential solution. So if you have a kid like Little Girl, or a kid like Baby Boy, please stay tuned... the answer is coming.

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