Tuesday, September 29, 2009

Unofficially 100% Certain: The Diagnosis

The twin's speech therapist has recently said that she is "unofficially 100% certain" that Collin has apraxia. What that means is that he isn't trying to say enough for her to conclusively officially diagnose him, but in all her years experience her gut is telling her this (and has for some time). His comprehension is actually advanced for his age (much better than Oliver's even). But his words are nill. He possesses all the apraxic characteristics. She is 100% certain.

What is apraxia?
From apraxia-kids.org: Childhood Apraxia of Speech is a motor speech disorder. For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech. Continued, but condensed info: The brain must tell the muscles of these “articulators” the exact order and timing of movements so that the words in the message are properly articulated. Finally, the muscles must work properly with enough strength and muscle tone to perform the movements needed for speech. Children with apraxia of speech have difficulty in this aspect of speech. It is believed that children with CAS may not be able to form or access speech motor plans and programs or that these plans and programs are faulty for some reason.

Basically, boiled down, his brain can't tell his mouth how to talk.

I've been chewing on this for a little while now, as you might recall a couple past posts here (before I knew of her thoughts) and here (after I knew). She mentioned it about a month ago as a gut instinct and then last week she said the words 100% certain.

I have read some on the internet, asked my fellow twin moms, spoke to my EI specialist and just tried to process this... trying to figure out how to help my little boy. Obviously he has been in speech therapy for a while now, so we have a jump start. However, we didn't really believe it was much more than a delay for a long time and now we know otherwise.

The current plan of action is to try to add another day of speech therapy a week and possibly also add music therapy, which has proven some success with other apraxic children. This would be in addition to the OT that Collin (and Oliver) already gets. We are not sure if he can handle four days of therapy, much less if we can swing it. But, we are going to try. I am going to sit down with his speech therapist and review different tools for that are out there - such as card programs and music CDs. My EI specialist also said that some families have found fish oil to help, so that is an easy thing to add.

We already have the Signing Times dvd series, which Collin loves. The first time he saw it, I swear, it was like he felt liberated that there was an avenue for speech. We have always done baby signs with the kids, all of them, but I think seeing the kids on the video signing and branching out into new signs just really opened a door for him. This is also a recommended dvd for apraxic kids, which we actually got before we knew he was apraxic. We have a variety of whistle and recorders for him to blow through to strengthen his mouth muscles. We also have a few toy microphones just to encourage sounds and speech at all. We focus on simple sounds, so as not to frustrate him, like mmmm for more or eeee for please (along with using the sign language for it). And of course we use motivating situations for requesting these sounds.

I have joined the apraxia-kids message boards, blog, newsletter and will probably go to the support group just to gather more information and find other parents in our situation - hoping to learn things from them regarding their journey and course of therapy, share stories about their children and find support from other parents who are trying to figure out how best to help their children.

Though all children are different, with appropriate therapy these children do learn to talk and then learn how to form sentences. Some it takes longer than others. For most their speech is very hard to understand even when they do learn to talk. And most experience issues through elementary school, especially with their Rs and Ss (needing therapy then too). However, most can go on, with much work, to speak beautifully as an adult. Most.

In the meantime, I can't help but feel sad. Sad that my little boy is unable to talk. Sad that he struggles and feels so frustrated. Sad that he has to go through this. Sad when he tends to play more by himself and wondering now if it is because he can't communicate. Sad because Steve said "I just don't want him to be made fun of because of his speech" and knowing that does really happen because I read it on the message boards. Sad because I wonder if it is my fault in some way. Sad because I can't fix it with a magic wand. Just sad. (and worried, concerned, overwhelmed and the gamut) That's the emotional battle right now.

The intellectual side of me realizes that this is not the worst thing in the world. Certainly I have some great prospective for that fact. I also know that I am doing what needs to be done for him. And that in the end, he will be fine, he will talk. Even if it isn't clear or understandable to all, he will most likely talk.

Even still, I'm his mom. That is my baby. I'm human. And all the practical thought can take a backseat at times like this... while I process all this information... because sometimes that is just how you cope. Sometimes you need to feel what you feel and say what you feel and just cry and look for support... from all avenues... while you deal with this fork in the road. So, that is what I am doing right now. Because, I'm his mom and that is my baby and I'm human.


Sam said...

What a great blog. I hope you know how much impact it has. I really enjoyed reading this post. Thanks for sharing your life. Keri

p.s. come over to www.samwich365.com

not just a foodie blog, just plain fun. Love,

Amy Villwock said...

I'm sorry, I haven't read your posts in a little while and now I wish I had. You are such a great mom. There is so much love in every one of your posts. I'm keeping your little guy in my prayers. Stay positive. :)

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