We met his new therapist yesterday for speech and we really liked her. Little Bug, as expected, was pretty upset by the evaluation- before, during, and after it. He had a couple of minor meltdowns and we had to take a couple of walks during the evaluation. On a side note, it was nice for one of his therapists to finally see this behavior in person and not just by video or in anecdotal tales.
The last time he was tested, he received a 64 in receptive speech, which rated a severe delay as the "normal" range is 85 to 115. In expressive speech, he rated a 74, a significant moderate delay. This time, his expressive speech had not changed. His receptive speech has gone up to a 71, which is amazing! As a child ages, the curve grows with the expectations raising. He made up ground! His over all score was a 72- a significant moderate delay.
It was the best bad news we have received. I imagine that one day, hearing significant moderate delay will stop hurting... eventually. Its not that we don't accept him- we love every moment with him (even when it is hard beyond belief) and everything about him. Its just as a parent, you want to give your child every opportunity. Sometimes, these situations make it hard to see what opportunities are there. He's not a victim of anything- that's not how we see him. Its hard to hear other people say that because of who he is, he is limited. We know that can't be true and will accept nothing less. Little Bug will reach his fullest potential- whatever that is.
I don't think that I can accurately capture why this hard without sounding like I am demeaning him or not appreciating the accomplishments he has made- and he has made tons! It is simply emotionally hard. I imagine many parents struggle with this feeling- of loss, of guilt, of second guessing. Often times, when I feel hurt- like by the results- I instantly feel guilty about feeling hurt. I have to defend and rationalize my feelings to myself rather than simply being. It is a dizzying maze and hard to explain. I'm sure you know what I am feeling.
2 comments:
Hang in there, Blake. You and Nick are AMAZING daddies, and I'm sure you're doing everything in your power to give Little Bug every opportunity to get to his full potential. Just remember, you too, are human, and entitled to every emotion that comes your way. And there's nothing wrong with wishing this cross had passed your door. Just don't dwell on it. :)
I think our low point was the 50 we got on one eval. That's so many standard deviations below 'normal' that the range that falls in has no minimum. IIRC - it's something like 0-55 is whatever is worse than 'severe'.
The last eval we had gave an estimated developmental age on speech rather than the score, which is just as well, though it was still depressing. At about 34 months, he tested between 11-17 months in speech development.
The good news is that in these past 6 months, he's made great strides. He's still way behind, but we're getting there. He understands way, way more speech than he can say himself, which is a giant improvement over where we were.
The downer is that his apraxia is clearly severe and he'll struggle to talk in a way people can understand for a long time. Hopefully we can get to the point this semester where he can 'graduate' to working on sound articulation rather than just picture pointing. We still have about six months until IEP time rolls around again, so here's hoping.
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