Thursday, February 12, 2009

Apraxia


This thing that has robbed my son of language as a name. It is called Childhood Apraxia of Speech. Even though we don't have an official diagnosis yet, all the signs point towards neurological disorder as the culprit. But even with a scary name attached to "he's not talking yet" there is a light in there somewhere. There has to be, right?

The speech therapist who came to the house today (yay for house calls!) played with him for at least an hour - mostly on their own while I was working on a deadline - before saying "I don't feel comfortable giving a diagnosis yet, but this really looks like Apraxia. But it doesn't seem severe. We'll know more next week." One of the reasons she wants to take more time is because of how he plays. He starts out ordering things and then creating absolute chaos. While this points to part two of his issue, he is someone who seeks sensory input thus the hugging strangers thing, it also shows that any sensory issues he may have are not as severe as they could be. The other good news, kids like Sammy, when caught early, go on to speak. Not all of them do, but most.

OK, enough of calm mom and time for freaky Lisa. I can read every statistic out there having to do with this disorder and become the poster spokesperson for Verbal Apraxia but that won't make this any easier. I was just told today that even with really hard work there is a chance, however small, that my son will never be able to communicate with the world around him without props an tools. I just realized today that very thing may make it so I NEVER hear the words Mama directed at me by my own son. I think that alone has made me cry the most.

But I also cry because my son is stuck in this gilded cage - or at least his speech functions are. How do you explain to a 2.5 year old that we can't understand what he's saying without frustrating him? How do we explain to his friends that they should treat him like any normal friend, just know he is going to hug you and probably won't speak because he can't make noise on command? How do we know when the problems with his behavior are related to the Apraxia and wen they involve him being 2?

But most of all, when will we find the keys to the horrible cage that has captured his tongue and release it so he can say "Mama?"

Thinking about that make my tears roll even more strongly.

3 comments:

Katherine said...

I'm sorry you are facing this. It must be very hard to live in such uncertainty. I hope access to good resources in the DC/Baltimore area maximizes the chances that the problems can be addressed.

downtown dc resident said...

I am thinking the best for you and your family.

Lisa Moore said...

Thank you, both!