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.

July 21, 2015

CDD again...

In a few days Ryan will return to the Center for Disabilities and Development. Some of you might remember that when he was first evaluated there last December he passed (most of) their exams with flying colors. He literally tested off the charts in his cognitive abilities but struggled with speech.

CDD asked us to bring Ryan back this summer so I honored their request and scheduled a follow-up visit. Honestly, when I made the appointment I did so kind of halfheartedly. I was almost positive that by July the appointment would no longer be necessary. In fact, I didn't even schedule everyone who wanted to see him because I hated to hog time slots that I figured we would never use.

And now, here it is. July. The week of Ryan's appointment. And it is still scheduled.

Ryan has made some progress, but not so much that I can, in good conscience, throw caution to the wind and cancel the appointment with CDD.

I feel like I'm back to where we were last fall- confused and completely clueless.  At least this time we have a support group of people who know Ryan and want to help him. But still, I can't help but feel a bit helpless. And I'm not sure why. Perhaps its because I originally took the ostrich approach to this and wasn't prepared. Or, maybe I've done too much research and scared the crap out of myself. Either way, I feel like I need some answers. Why is that? Why must we insist on getting answers or naming everything that we don't understand?

Whenever Ryan forms a new word or communicates a new thought, I can't help but be excited for him. And then he moves on to the next word or phrase or story or whatever it is he wants to say in his Ryan-esk language, and I feel frustrated again. And he feels frustrated because I don't understand his super exciting story.

I have often wondered if Ryan thinks that all of the people he sees on a regular basis are just showing up, bringing cool toys for him to play with, giving him their undivided attention for an hour, and then leaving. But, lately he has proven to me that he gets it. He seems to know that these people are teaching him to speak. To talk. To communicate. I think he appreciates all of their help, and tries really hard to use what they have taught him. He's pretty smart like that.

Hopefully the next few weeks will provide us with more answers than questions. Hopefully we will continue to march down this path of progress (perhaps with a quickened pace even). Hopefully by this time next year we will be able to turn around and see how far we have come.

July 2, 2015

Life as a child is pretty good...

I would never willingly choose to suffer through junior high again. And although high school was fun, I do not miss trying to be cool or hip or whatever it is kids call it these days. I would, however, consider being 2 or 5 again. Back when summers were longer, ignorance was bliss, and the world was still my oyster.

My kids have it pretty good, and here are 10 reasons why some days, I would rather be them...

1. My 5-year-old daughter defines a bad day as one without dessert or the right blue crayon. Yeah, life is tough when you're five.

2. Birthdays are still fun to celebrate. And "feeling old" means they can now reach the kitchen sink.

3. Their daily schedule: get dressed, play, eat, play, nap, play, eat, play, bedtime. I mean...who wouldn't want to go back to that schedule? Can I get an Amen?

4. Too tired to walk somewhere when you're two? No problem. Slow down, fall way behind, and let mom or dad's legs do the walking for you.

5. Too tired to get dressed? Also not a problem. Just don't. All you really need to do is hold your arms in the air and sing while someone else does all the work.

6. Rachel knows that we pay bills to keep a roof over our heads and the TV on. But, in her mind happy unicorns deliver rainbow colored bags of magic coins that gleefully dance into the mailbox.

7. Gnats and humidity. What are those to a child? Nothing.

8. A nickel is just as exciting as a quarter since all money is equal. But a dime isn't very fun because it's so small. And bills don't make a neat clinking sound when they are smashed into a piggy bank.

9. When clothes no longer fit my kids it is because they grew taller. Not wider.

10. Rachel wants to be a people doctor and a science teacher and a pirate when she grows up. Ryan most likely wants to farm or race cars or be an engineer. May they never run out of time to pursue their dreams or discover their passions.


This post inspired by:
Prompt #5: Who has it better, kids or adults?