July 31, 2015

It has a name...

Last week Ryan received the disappointing, yet not all that surprising, diagnosis of Childhood Apraxia of Speech (CAS). CAS is a (neurological) motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. He knows what he wants to say, but his brain has difficulty coordinating the muscle movements necessary to say his words. In most cases, the cause of CAS is unknown. In fact, research on CAS has been limited and, in the past, children with CAS were often misdiagnosed as having autism.

The word "childhood" is a bit misleading as this is not something Ryan will ever grow out of. However, with speech therapy he will eventually be able to communicate more effectively.

This diagnosis has left me relieved. And frustrated. And angry. And hopeful.

A name. It finally has a name.

I know you're not supposed to do this, but every morning I step on the scales to see if that annoying red needle is going to stop any lower than it did the day before. At all. Sometimes I even step on it several times. Because maybe this time will be better. I often catch myself in the same mindset with Ryan. Maybe this time I will ask him something and get an intelligible response. Nope? Okay, let's try again... maybe this time. Let's try one more...

I go through stages with this whole situation. Sometimes I feel depressed and angry. Other times I cry because I'm thankful that CAS is all that we're up against. It could be worse. Much worse. And then I feel stupid because CAS, although a neurological disorder, is nothing compared to some of its close (or not so close) relatives. And who am I to have a pity party? What right do I have to fret about CAS when there are children raging wars against cancer and other, much scarier, disorders and diseases?

Once in a while I tell myself that if I just forget about it, maybe this will all... go away. Poof. No more emotional roller coaster rides or appointments or awkward moments in the grocery store.

Aren't you adorable? What's your name? How old are you? Are you shy? Is that why you aren't responding? My son didn't say a single word until he was 3. You just wait...he will eventually have something worth saying and he'll say it. 

No lady. He can't talk. He's full of things to say but his brain won't let it out of his mouth. It's stuck. All of it. Just stuck in there, trying to fight its way past his lips. He has CAS and can't tell you that he will be three in August and loves to play with trains and puzzles like other little boys his age. He's a sweet, special little guy who can understand every single word you say, and if he could, he would make you laugh with a silly response to your old lady question. But he can't. Because he has CAS. And so most of his words, his precious little words that sound like gobbly gook to you, are the best he can do right now.

I keep asking if he knows that his words don't sound like other people's. Or, does he truly believe that the rest of us, for whatever reason, are all a bunch of idiots who cannot understand a well-spoken word when we hear it. And why, in the name of all things holy, can't we just respond to him. Argh! Adults. What are you so worthless to me?!

I've gotten mixed responses to that question.

In a few weeks Ryan will start preschool. I'm trying not to let myself get too excited (or terrified). I know this will be extremely beneficial for him. But what if it's not? What if we put all of our hopes and dreams into the next 12 months and get burned? Again.

Last night Ryan was hot and tired and couldn't settle down so I laid in front of the fan with him on the floor until he fell asleep. I could see his little eyes in the dark. And his smile. And my heart melted for our special little guy. The little boy, who has CAS.

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