Join Date: Mar 2005
Location: crocheting a new tinfoil hat
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Okay, so Maura's 3 1/2 now, we've been doing the whole gauntlet of testing, are actually due back at the neurologist soon for a re-evaluation and will probably end up at a geneticist after that if the neurologist can't find anything (which he hasn't.)
So I've been scouring the internet and NORD trying to come up with ideas as to what Maura might have - the neuro said that she has SOMETHING - but what that is, we may never know.
Meanwhile, took her to a private ST who said "I'm almost positive she's apraxic." Impressive since Maura doesn't have many words and wasn't that chatty at first (though did warm up halfway through and got very jabbery.) I mentioned this to Maura's preschool teacher, who's also an ST, who nodded her head in agreement over that diagnosis.
And across town - lol - Maura's PT and OT have always constantly mentioned "motor planning" about Maura - as in "She has problems with motor planning." Well, verbal apraxia makes sense if she has motor planning problems in other areas as well.
So on a whim, looked up "Motor planning disorders" and found dyspraxia. Though it can also be called apraxia as well. But it's someone with fine/gross motor skill delays who has to almost plan out more each movement. This is SO my dd. Maura doesn't just hit steps and go. She will stop, think, then walk up. But she can crawl up with the speed of light. She could use a fork, but it's just faster to use fingers. She's trying to figure out how to tie her shoelaces and can get her shoes on, but b/c of her low muscle tone, she needs DAFO's to support her ankles. And so on.
Could it really be this simple? Could it all just be a motor planning disorder and not some chromosomal disorder or metabolic disease? It's mind boggling to think that it could all just be about motor planning. She's never lost skills, gained slow but steady, though since starting preschool, has gained more skills more quickly. And socially she's always been on target.
I'm afraid to get hopeful that this is it. I've resigned myself to the fact she has something she may never outgrow or overcome, that she may well indeed be reliant on us or her sibs for life. But if it's just dyspraxia...she could overcome most of that and become independant by adulthood maybe...
So does anyone know anything about this????