Hi all! It took me a while to get this posted b/c there is a lot of info so hope you're comfy b/c this is a long one. (side note: i have listed some interesting links/blogs on this page so when you have time & if you are interested, take a look)
Grayson had his evaluation with Dave Hammer, a renowed speech therapist(SLP) here in Pittsburgh, he is a nationally recognized leader in the evaluation & treatment of childhood apraxia of speech (CAS). He also coordinates research efforts at the hospital related to speech sound disorders in young children. He is just simply phenomenal! Anyway, he has given us a "working" diagnosis of childhood apraxia of speech. A "working" diagnosis means, they think this is what he has going on but because he is so young, their opinion/diagnosis may change in 6-9 months as he gets older.
Ok, so what is CAS? I talked about this briefly in another post but it is a neurologiacally based speech disorder that interferes w/ the child's ability to pronounce sounds, syllables & words. There is nothing wrong w/ the muscles themselves. The area of the brain that tells the muscles how to move & what to do is either damaged or not fully developed. He knows what he wants to say but can't say it when he tries. Either the wrong sound comes out or no sounds come out at all. This is involuntary & he has no control over it. No one really knows what causes it. This same problem in the brain can also cause problems with fine motor skills as well, which is why he is in OT as well.
So that is the clinical info. There is a TON of more information on the apraxia website: http://www.apraxia-kids.org/ if anyone has more questions. It is a great website. Now for the emotional side of things. Here is my pre-emptive warning: I am putting this out there not to ask for sympathy or pity, but because I am hoping this blog will make it's way to other families with similar issues and that they can find solace knowing they are not alone.
With that said, this has been a huge blow to all of us. I didn't know what outcome i was hoping for from the evaluation but i definitely wasn't expecting this wave of fear and emotions. I have been heartbroken since. I guess although i knew there was a good chance Gray had apraxia, deep down i was hoping he was just a late talker like Ryan. It breaks my heart that something that comes so natually for most other kids, Grayson has to struggle with all day, every day. It's not fair. He is the sweetest, kindest most amazing person, besides Ryan i have ever been blessed with in my life. The kindness, gentleness and just overall goodness that radiates from this little man is astounding. And yet, he has a rough road ahead of him. We all do. He just plain can't do things other kids his age can do. He can't catch a ball. He can't say "mama". He will have to work hard to do these things. Luckily, so far, he is willing & eager to try. We are all learning signs to help him communicate. And as if all this wasn't bad enough, poor Easton (who has his own issues, i will get to that in a minute) sometimes gets left out. Grayson requires so much attention (& not in a typical child wanting attention manner)that E doesn't get NEARLY as much attention as he should. He is the baby after all. I worry that he is going to have to be in special education when he gets to school & will have to deal with that stigma. Luckily, Gray started his speech therapy early and we caught this relatively early, in comparison to many other kids, so I am hopeful we will have things under control once he starts school. There are so many other things we need to be careful about, that you don't even think of until you are faced with them. Things that other parents don't have to worry about. Things like finding babysitters, teachers, etc. that can handle a non-verbal child. A (*gulp*) special needs child. When we go out in public, he can't yell for us or for help, or if he gets lost, can't tell people his name, etc. BUT, he really is so smart & so aware of everything that is going on. There is no doubt that he understands everything you're telling him and what is going on around him. Which is wonderful but also worrisome, because i don't know if it's a good ting or a bad thing if he understands what is going on with him. I think right now if anything he either doesn't know or just thinks his mouth/hands won't work. So, that's the hand God has dealt us & we just have to play it to the best of our ability.
Now, on to Easton. He has only seen his new OT twice, therapy 1 time. He will make some progress, then step back, then progess, then step back. I'm guessing that's somewhat typical. He has at least been taking solids at least once a day. We did stop thickening his bottles a couple weeks ago and he has been doing really good with that so far. That has helped with his constipation too (which would sometimes lead to his lack of appetite) which are all good things. I did introduce a sippy cup to him last week and though he doesn't do much with it, he grabs hold of it great & does bring it to his mouth. he mostly just chews on it, but again, all good things. he is getting over a sinus infection and at the same time, he is FINALLY getting 2 teeth. Yay!! He is sitting up by himself for long periods now and is soooo close to crawling. It'll be any day now and the wild child will be mobile, LOOK OUT! I am going to have to re-do all my baby proofing b/c Gray is so good, he just leaves most stuff alone. Not E, he is into EVERYTHING.
I never thought i'd be a mother to a special needs child, let alone 2. Let alone 2 this young and this close in age. As hard as it is at times, and BELIEVE you me, it gets HARD, each of the boys gets frustrated, we get frustrated, we're tired &/or hungry, impatient, i cry, the boys cry, what have you, i wouldn't trade it for the world. I have THE best family in the world. Besides, i've always welcomed a challenge. :-) Now I have to go find the critter running around in my walls...
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