Wednesday, December 7, 2011

EI Results Today

Our EI results meeting went well. As expected, Sunshine has both a speech and a social delay. What wasn't expected is that her social delay is more pronounced than her speech delay- she has a 20% speech delay and a 25%+ social delay. I didn't ask what the true figure of her social delay is, and can't figure out the algorithm used. I guess knowing that she has a standard deviation of -2 is enough. It means it's a severe delay, which is a little hard to conceptualize in the face of such a bright, beautiful child.

She'll be getting speech therapy once a week, which is the maximum they offer as EI can't afford more. If we wish, we can get additional speech through some of the various places in town. I've read, that for the under-three set, speech therapy weekly is about as intensive as you want to get, but I've also read the opposite. After we have our first meeting with her SLP we can think about adding more. It's unlikely that we'll know what's at the core of her speech problems- is it oral motor? Is it structural? Is it auditory? We likely will not get a clean answer with that.

As far as the social delay goes, we weren't offered anything, specific or general. Mr. Husband and I have discussed hiring one or two adults to come in and play with her on a weekly basis as "play helpers." We've not had great luck with socializing her outside the home. She does surprising well at the hellish play area at our local mall, but any amount of structure added to out-of-home activities is asking for a meltdown.

We think her meltdowns are largely sensory in nature, and have an OT eval in two weeks to set up her sensory diet and determine if she might benefit from monthly OT appointments to help her self-regulate and give us new/better ideas of how to help her reach her full potential.

At this point, my anxiety is much less than even a week ago- I think bumping my Zoloft up to 25mgs (how's that for a "therapeutic dose!") has helped a lot. I'm not married to the idea that she has autism right this second, though it's becoming increasingly more difficult to think that it could be anything else, as I don't know what else could possibly cause such disconnect in a healthy, smart girl.

Social delays are caused by things like lead poisoning, malnutrition, neglect.

And autism.

Could it really be that a neurotypical child simply has such an independent personality that she will play happily by herself for 4+ hours? Can a child not react to the extreme emotions of a parent and then go on to form deep, meaningful bonds with others? Could she really be *just* that quirky, but not autistic?

Anything's possible.

I go back and forth on this. Thinking of her as "just speech delayed" or "just quirky" sure feels good. It really does. Thinking that there's nothing *wrong* with her development feels nice and warm and safe. Then I think, yes, that feels lovely, but what if you're setting yourself up for heartbreak? What if you convince yourself that she's typical, that's she's fine, and the day comes when she's given a numerical code that signifies not so much typicalness, not so much fineness. Doesn't it make sense, logically, to come to terms with the "worst" case scenario? Then, if after being evaluated by people who really know what they're doing, we learn that, yes! She's just quirky! Then I'll feel *wonderful!* I'll feel relief! But if the results are more on the 299.00 level, then I won't have all these dashed hopes.

Not that it will really matter. We know that, as of right now, she has a moderate speech delay and a severe social delay. That means we have words for what we already knew, nothing more. We don't know why she's delayed, and we could live our entire lives not knowing. Making peace with the unknown is a terrifying concept to someone, like me, who thrives on knowing exactly why things happen. It's not enough that the toaster toast my toast- I need to know why and how.

You don't get closure with diagnoses. You don't get to close the book on your kid's issues and move on to something completely different. You don't get answers, which is just as well, as you don't even know what the questions are. You just keep living, you just keep loving your child. It's all you can do. It's all any parent can do for any child.

And it really sucks, because that's not enough. It's not a satisfying answer and it brings no sense of movement.

But it has to be enough, because that's all there is.

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