Monday, July 18, 2011

Childhood Apraxia of Speech

We came home from our little vacation up in Maine today and in our mailbox was the final paperwork from the Children's Hospital we took Little Man to a few weeks ago.  In black and white, it stated that he does indeed have Childhood Apraxia of Speech (CAS) as well as Temperament variation vs. Regulation Disorder: Hyposensitive/Underresponsive subtype...basically in real language - he knows what words are - he hears them - he knows things have words, however he can not produce them right now.  It's a motor planning disability where he can not get his brain to function to his mouth, tongue, lips, etc to produce the sounds that make the words.  The second diagnosis...well, he's laid back, easy going, and passive - if he doesn't make the sound, for him it's not the end of the a classroom setting, he'd be seen as the "good" kid who doesn't talk out, doesn't call attention to himself, doesn't mind if he doesn't get his own way sometimes...he's always been our "good" baby - quiet, good eater, good sleeper, happy-go-lucky...and this sort of explains his passiveness.  The combination of the two is tricky - basically, he isn't motivated to make the sounds and would rather let others do it for him or just walk away completely.

So, what does this all mean?  We're not 100% sure right now.  He's going to get a ton of speech services.  Right now, he'll get 2 hours of speech a week from Early Intervention and an hour from a developmental specialist.  The specialists at the hospital want him to also have OT at least once a week and possible outside speech therapy an additional 2-3 times a week.  So we're talking possibly 5-7 appointments of therapy a week for our little guy.

Some things I do know and people who I know and love have been giving me a ton of advice, and I hate to be frank and vent - but this is what it does mean...I do not know when he will talk in complete sentences.  It's not going to just "click".  There is no instant cure for this.  We have no prognosis, except that with therapy it will get better, we just don't know how much better.  He's not going to "just talk when he's ready."  I don't want to hear from people who has a second cousin twice removed who's kid didn't talk until he was three and then started talking in complete sentences shortly after his 3rd birthday.  He may not be "typical" and potty train at 3.  He is going to grunt and point and DO NOT GET FRUSTRATED when he does this.  It is his current means of communication.  Feel free to try to get him to produce a sound and encourage him, but if he's frustrated he may not look at you and he may walk away.  His tantrums may look different from your kid's tantrums, but just because he's not yelling or screaming, he's frustrated and he's showing it in the way he can (even though it's nice and quiet). 

The past few days, I really thought about this - and any time I think about it, I cry...I guess I'm grieving through all of this - which is insane because it's not like he has a disease that will kill him - but when you hold your little baby in your arms, you have a picture of what things are going to be like and after 28 months, it's not completely what you pictured.  I look back at Big Girl's toddlerhood and much of her time was all about her talking and communicating with us.  It's difficult to hear silence from Little Man - people who know me know I love to talk and I love to hear others's frustrating to be with someone and not know their emotions because they can't verbalize them.  Yes, I can tell when he's happy or sad, but I don't know why he's happy or sad.  I can't ask him, "What would you like for dinner tonight?" without displaying predetermined pictures or prompts while I wait for a smile and a head shake.  Little Man is such a great eater - I would love to ask him, "What's your favorite food?  If you could have anything you want for dinner right now, what would it be?"  I can guess that it's spicy Mexican rice, or pasta, or chicken dipped in ketchup - but I can never be 100% sure.

We do know is that he's a very smart little boy - and I have the paperwork to prove it ;) He loves his family - especially if you are a male in this family, he will follow you around to learn everything you do - if you have a screwdriver in your hand, even better!  He loves trucks - his first word was "ruck" and you can hear him say it almost any time he sees one.  He loves our dog Buddy - he loves to cuddle him and kiss him and snuggle him, and thankfully, Buddy loves him back.  He worships his big sister - he will seek out her toys and want to play with her whenever he can.  He blows the biggest kisses and gives the fiercest hugs around the neck.  He loves life - he wakes up every day and doesn't know what's in store for him and he takes it all in stride to the best of his ability.  He has a great team of people who are going to advocate for him and be his voice until he can find his own.  He has parents who will fight for everything we can possibly give him so he can be successful.  He has the best big sister, who I know will look out for him and be his therapy buddy (whether he likes it or not). :)

1 comment:

Dala said...

I'm so sorry. I remember that first week (ok, at least three weeks) after diagnosis. I cried all the time too. That diagnosis was the thing my mind wandered to in every quiet moment.

You're doing better than I was. You have been really proactive and have so many services set up for him already.

I hope the emotions even out for you soon. It got better for me after a few weeks. -Hug- You are not alone.

Good luck!