Thursday, November 6, 2008

How? Why? . . . and what now?

How I wish I knew! SPD seems to follow a similar pattern of emersion as autism-spectrum disorders, and many of the same treatments (and theories on causes) apply as well. Lots of kids show no symptoms before several months, or even a year or two of age, and many of these parents attribute a large part of the blame to vaccines, and I believe them, which is why we have avoided vaccinating JoNo. But that does make it more perplexing to me where it came from for him!

Oh, despite having done as much as we could to give him a healthy start in life (breastfeeding, even when we discovered his dairy/soy allergy, cloth diapering, no vaccines, etc.), we have lots of possible culprits but no real definitive answers. Was it the forceps used in his delivery, that may have smushed his brain or tweaked his spinal column and affected his neurological system? Was it the handful (3?) we had done during the pregnancy? Is it due to environmental toxins (offgassing from household items, packaging, etc.)? Is it just bad luck, or genetics?

Looking back, I'm convinced he had SPD problems beginning at birth -- the only time they took him from me the first night was to wrap him in heat packs and blankets because he wasn't maintaining his body temperature well. Common for a lot of normal babies, I know -- also common, and continuing into childhood, for SPD kids. And there were other early signs -- he screamed in the car and hated his baby swing; he would startle, even from a dead sleep, at someone opening the blinds in the next room; he chewed on every inanimate object he could get ahold of, but rarely put food items into his mouth; even at nearly a year old, anything we tried to feed him was gagged on, and it took months of sensory therapy to teach him to tolerate food in his mouth, to learn to chew it up instead of just storing it in his cheeks, and to coordinate swallowing it.

At first we believed (or just wanted to believe?) that any "problem" he had was just an immature neurology, and that it only affected his mouth, and would go away. In fact, when he "graduated" from early intervention therapies at age 3, he seemed to be doing fine. But over the next few months I started seeing things that bothered me -- he didn't seem to be making much progress in learning to dress himself, or use eating utensils or writing utensils. Despite a keen interest in them, and several attempts, he could never get the hang of pedaling a tricycle -- even though kids half his age could do it. I could no longer use the "he's just not interested in that skill" excuse, which is true in many cases but was clearly not the case in many of his self-help and tricycle related challenges. And then there were the meltdowns and outbursts of anger and frustration. I tried dozens of parenting tools, and after a few months, even posted a question to my "positive christian attachment-parenting" moms group asking for help. The first, and only, reply to my post asked: have you ever had him checked for sensory issues?

The realization hit me like a ton of bricks. Harriet's (she was JoNo's therapist through early intervention) words regarding eating habits rang in my ears: "If discipline just isn't working, it's a sensory issue." And then the wave of mommy-guilt washed over: "Duh! How could I not have put the two together?"

I borrowed "The Out-of-Sync Child" from the public library, and even before I finished it, I bought my own copy. I could hardly believe it -- those vignettes, the before-and-after stories, sounded just like JoNo. Cowers from loud noises? Check. Overreacts to unexpectated touch or sound? Check. The story that really hit me was of a kid who just didn't seem to "learn" not to touch the cat; despite several scratches from the family pet, the child repeatedly tried to touch, cuddle, and lay on the cat (laying on things gives you loads of deep-pressure sensory input, especially if what you're laying on is warm and soft). I thought the author had been watching our family's trials with a new kitty for the last few months and outed us in her book.

So how do you deal with sensory processing challenges? You create opportunities for loads of sensory input, combined with understanding what/when sensory overload is coming and pre-empting (or at least managing) it with some calming and/or sensory-organizing tools/techinques. In most cases, that means getting occupational therapy to stretch those sensory boundaries under the guidance of someone who knows what they're watching for, when to push and when to let up, and what sensory experiences will help most. The good news: we live nearby an occupational therapist who specializes in sensory processing disorders and is excellent at what she does. The bad news: the wait list was LONG!

Those four months on the wait list were tough. Not everone around us was immediately convinced or supportive, and even those who were didn't really know how to help. And all the skepticism pounded in my head, creating doubt and inspiring second-guessing. I knew deep down that this was the problem, but the skepticism, parenting advice ("you just need to show him who's boss") and even well-intentioned "I'm sure everything is fine -- he's just spirited/being a boy/not interested/will grow out of it" comments pestered me. I almost crossed our name off the wait list a few times. I kept reading parts of the book out loud to my husband, or asking "don't you think this sounds like JoNo?" until he was ready to tear his hair out. And even though I didn't want to need it, I was desperate for the definitive opinion of an expert.

And finally our name came to the top -- and the expert said everything I knew and so needed to hear. "Most people would never look at him and think there's a problem. He's so smart he compensates a lot, and he relies really heavily on the one system that actually works for him. But I can look at him and know what's working and what's not. And I can see that most of his sensory systems are not working for him very well at all." I left that appointment overjoyed -- I knew the discouragement of the diagnosis would come, but at that moment I was relieved. I could trust myself again -- my motherly instincts, my critical thinking skills, my compassion. I could know and understand my child again. I could love him without fear that I was loving him too much for his own good.

It's as if I finally gave myself permission to view his behavior through this lens. I immediately started studying JoNo again. I watched the way he responded to sounds and touch, and especially to movement. I joined an online e-mail group for parents of children with SPD and learned that his sleep and night sweats were probably also related to the SPD. I spent hours at my sewing machine making weighted blankets and vests for firm deep pressure (calming) and at my computer studying up on dietary recommendations. And we started therapy -- an hour a week of sensory smorgasbord.

I've honestly not really asked "why us?" I don't really wonder why we're faced with these challenges. I already know the answers. God knew we'd figure him out, we'd make good choices for him even before we knew of his struggles, we'd nurture him the way he needs to be nurtured. And more importantly, He knew what we need to learn and how we need to grow ourselves -- in growing up JoNo, he's growing us up, too.


Caeseria said...

My understanding is that the cause depends on the child. Some are more sensitive to vaccines maybe. My son was born three months premature and we think that's where his issues came from - just being subjected to sooooo much so suddenly with that very immature nervous system. It would explain why as soon as he left the hospital he was a very different baby. In the hospital, he slept fine all bundled up normally - within a week of coming home, only my husband could wrap him tightly enough to induce sleep.
The picture of your son sleeping is so CUTE! That blanket just looks so comfy.
I love your blog!

JoNo and family said...

Welcome, Caseria! I'm glad to hear you're enjoying reading my blog :) If you ever have ideas for topics you'd like to hear about, please let me know.