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Met w/DFS's (1) neurologist yesterday to get the results of his MRI - his entire brain is underdeveloped. It's smaller than it should be, loosely packed, and has some underdeveloped structures. All in all, it's all there, so there is no specific indicator of a skill that he will not be able to gain, but its just generally...underdeveloped.
So, my understanding of his prognosis is that he will likely continue to make progress, but is not likely to "catch up," per se. Though the neurologist did say that she has seen normally functioning children with similar MRIs, so it's not the end of the world, but...it's definitely depressing. Our hope is that someday he will live independently...he's almost 2 and just learned to walk and is functioning at about 15mos, but is non verbal, except for one sign. Considering where he was developmentally when he came into care, he's made up almost month for month (no acceleration, maybe a little loss of time). Right now he's enrolled in 8 therapy sessions/week - 2 through EI, and 2 each of PT, ST and OT. It's exhausting...but I feel like the time is NOW to get him the most help he can stand.
I don't know why I'm venting all this - there really isn't a question at the end. I could just use some support, I guess.
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I hear you. We haven't had any testing done beyond early intervention (going in Oct for genetics), but my fs is very behind.
He will be 2 in August, and still walks with that unsteady gait that brand new walkers have (even though he's been walking since January), he does not use any words functionally, although he can repeat about 10 words, and does not use any signs functionally, although he will repeat about 5 signs if you model for him. He woke up for about a week when he got glasses, but now is back to his old ways of just sitting down on the floor with a book. I have to literally take the book away and start a chase game with him or something similar to get him up and moving!
Sounds very much like your little guy-- he is progressing, but very slowly, and I don't know that he will ever catch up. I am interested to hear what genetics has to say when we take our little guy in. His weekly appts are exhausting, and I constantly wonder if he would do better in a foster family that doesn't already have 1 special needs child, even though his early intervention therapists say he learns tons from my kids.
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I understand your concerns. my son (now almost 5) was born severely premature, drug affected, down syndrome a heart defect and now diagnosed severely autistic.
He went through developmental milestones very slowly, didn't crawl until almost 2, walked at 26 months. learned to say a few words at age 3. Just recently started using PECS communication system,and is able to take our hand to show us something , or bring a toy to us.
But he is the most delightful child!everyone in our family loves him.. he may never be a fully functioning adult, but he has come a long way.
We were told he would never crawl, walk or communicate... and here he is.. surpassing all the Dr.'s predictions.
My advice is NEVER give up ! Even with the most grim prognosis, you never know what a child is fully capable of.