Thursday, March 10, 2011

What Sensory Processing Disorder Means To Us

Hi All,
I realize that a few posts back I left a bit of a cliff hanger, in regards to what it means for Stella to have Sensory Processing Disorder. So, I will do my utmost to explain it. Please, I am not a doctor, so this is not the gospel truth, just my best interpretation of what it means. At least as far as Stella is concerned.

Basically it means that you have a hard time, as the name of the disorder implies, processing sensation, information and stimuli. We all have the ability to regulate how we deal with stimuli. This can be new ideas, the signals that coordinate our muscles and brain, or things as basic as the five senses. The latter two are the major areas that people with SPD have to work at, and develop strategies for.

You see you can be overly sensitive to stimuli, meaning you jump when you hear loud noises and light makes you squint, even if it's not all that bright. (And so on.) You can also be under-stimulated, meaning that normal sensations don't really register with you. These are the kids who put their tongues on everything, twirl around getting dizzy until they throw up, and don't feel pain like the rest of us do.

If you are overly-sensitive the world can be quite an overwhelming place. In Stella's case the world, quite literally, was an overwhelming place, in fact. THIS is why she didn't sleep for the first 18 months of her life, or so. The very worldness of the world, I suppose, bombarded her in such a way that she literally couldn't handle it.

It all makes so much sense now. The first night we brought her back from the hospital she screamed and cried, and couldn't sleep. Aha!, I thought. I have just the thing!

Our bassinet had a vibration mode on it, kind of like a junior, junior version of the old "magic fingers" found on some of your seedier motel mattresses. (And that's saying something.) And failing that it had a curved plastic tower that emitted soft music, had lights that oscillated up and down and even a mobile with little spinning bears.

No crying child, I thought, could withstand this onslaught of soothingness.

She was so adorable, so small, so new, I just couldn't bear to see her upset. (In her little onesie, the memory, I tell you, of her back then, it makes me tear up a bit, even now.) So with great confidence I flipped the switch on the magic fingers and awaited her soft, soothed cooing sounds.

Instead she only screamed louder and longer, as if in mortal pain. Ah! No way! This could not be!

Stubbornly I kept the bassinet on "vibrate" mode for about five minutes, confident this was all just a mere misunderstanding. It was not, she wailed and wept, and would not be comforted.

I begrudgingly turned the vibration mode off, sad that it would never get to do its intended job.

But I had options! I turned on the soft music and oscillating lights, and found myself almost hypnotized by the magical effect. Stella, once more, only screamed more and louder. The spinning bears, too, did dick.

And so it went. Nothing we did soothed her for days, weeks, months. (Nothing, that is, except nursing on Randi's breast for hours at a time, until Randi began to bleed.) We had gotten a baby swing for a present, she, again, only screamed more.

I could go on, but I am sure you get it. The point is, and we didn't learn that she had a disorder that upset her thus until three months ago; she was overstimulated by it all, and those various toys only amped up the stimulation. The magic fingers probably felt to her like electric shocks or needles, or made her want to crawl out of her skin. The lights probably shone like magic cubes, the music probably pounded in her head like a hi-fi set on "annoy."

Over time other symptoms manifested. Stella was late to roll over, late to crawl, late to walk, even late to talk. (Hard to believe the talking part if you see her today, she talks a blue streak, and has a great vocabulary for a little child. Seriously, it's better than some possessed by my old customers at the dive bar I used to tend bar at.) She had and has a hard time going up stairs, or down. Her utensil skills are still fairly crude. She doesn't know how to jump.

All this is a function of her body not being able to process the signals coursing through it. There is a slight lag, the regulator inside is not quite regulating right. So external stimuli floods her and her electrical nervous impulses can't keep up with what needs to be done.

It's not all that uncommon a disorder we have learned. Something like 10-15% of all children suffer some degree of this, one way or the other. Virtually every child with autism has SPD in some way, but the reverse is not true.

With Stella the way it shows up in public is that she becomes overwhelmed in scenes with a lot of commotion. So preschool with its bright colors and busy, busy children causes her to mainly shut down. The situation is very different at home, where she is completely at ease, and comfortable, obviously, with us. I wish her teachers could see that Stella a little bit. I know they care about her a great deal, and I wish they could get to have some of that kind of fun with her.

So we are doing our best to help her learn how to cope with it, and we have to learn how to help her cope as well. Twice a week she sees a great occupational therapist paid for by the Commonwealth of Kentucky, through an early intervention program called First Steps. She is eligible for this program up to age 3. So it will end on April 14, her birthday. We are also examining other schools that have staff that are trained in developmental and socialization issues.

But for us, we want Stella to get all the help we can get for her, but we also don't want to over-react, and make this some kind of defining thing for her. It's not. She is a lovely child, so friendly, so funny, so personable, so smart too. She is truly the sun and the moon to us, the reason the world turns, why it all was created, what it's all about. She is a gift and sometimes when I go to bed it's with a smile, knowing I will get to be with her the next morning. (Sometimes I don't go to bed at all, insomnia!)

We just want her to be able to share that face, that we are so privileged to see, with the rest of the world. And so that the rest of the world gets to know the real Stella back. So she has something called Sensory Processing Disorder, but it's not who she is, it's just a thing. We'll deal with it, get used to it, and eventually, I believe, perhaps well down the road, stop thinking about it.

1 comment:

Anne Stesney said...

You guys are terrific parents. Stella is a lucky girl. She's going to do great in this world with the loving support she gets from you and Randi.