Monday, January 17, 2011

The Number Game

I'm waiting for the time when I'll become ok with Dean having evaluations of one kind or another. I mean, this is not my dog or my ability to bake a cake, it's my kid. Dean's 6-month review for Early Intervention is coming up and I'm thinking about sending a talking blow-up doll to the meeting. I love our service coordinator and really all 3 of Dean's therapists, but putting all the numbers on a person who carries your heart around with them is just not my cup of tea. I know that the numbers are necessary to get services for him, but I'd still rather they didn't exist. My skin is getting a little thicker than it was when he was first born, or 4 months old, or 8 months old, but because I just love Dean so much, there's always going to be a chink in the armor.

And honestly, you could ask me the numbers and I won't tell you because I forgot them. I'm sure it was a subconscious survival technique on behalf of my brain (thank you, brain! No, really...), but I heard the numbers and then promptly forgot them. But shaking the feeling that those numbers produce is a good bit harder.

It's like weighing yourself. I stopped weighing myself on a regular basis years ago because well, submitting my self-esteem to a stupid machine was about as good of an idea as was sticking my hand in a blender. "Good" numbers produced a false self-confidence that was actually quite vulnerable to attack, and "bad" numbers just plain ruined the day (or week... or month... bah...). So now, I don't even own a scale, and I like it.

The other thing about evaluations and children with special needs (I imagine this extends to adults as well in some contexts) is that these kids have not just to prove themselves, but to over-prove themselves. In the moment of a great accomplishment, the feelings are overwhelming - such love, such pride, such satisfaction. In an evaluation, those accomplishments become more of a "yeah, but..." followed by a list of all the other tasks that were "supposed to be" accomplished during that time frame. No rest for the weary.

I remember when Dean came home from 5 weeks in the NICU and had his first sleep study shortly after. We met with the pulmonologist for a follow-up to review the results, his main concern being the number of desaturations (drop in blood oxygen concentration) that Dean had during the night. (I should add that within just a few weeks of starting growth hormone, the desats completely disappeared!) Before taking away the pulse oximeter (machine measuring concentration of O2 in Dean's blood) that Dean was attached to since coming home, there needed to be a considerable decrease in the amount of desats during the day and night. I said to the pulmonologist, "how many typically-developing newborns are out there in their little bassinets who are having desats throughout the night just because of their delicate age... but we never know because they weren't born hooked up to monitors all the time?" He chuckled and said, "good point. Probably a lot... maybe most of them." Together we lamented that once you're born with a label, with an "issue," you have to go above and beyond to overcome the issue and be seen as good to go. Obviously there are some good reasons for this, and it gives me all the more respect for Dean and others like him. But it still stinks.

It stinks mostly because I have an amazing little boy. I look at him truly many times a day and just marvel at how wonderful he is and how grateful I am to have him. As I've said before, I think everyone should have a Dean in their lives. :) There's no point putting a number on THAT.

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