The official verdict is what I've suspected for almost 2 years now. Micah has severe verbal apraxia. In addition to that he's battling speech inconsistencies related to Down syndrome, and has a great lack of sensory development at the front of the mouth. The last thing seriously hinders his forming his mouth into shapes to make sounds. And is why he is incapable of drinking from a cup at the age of 7.
In a nutshell, the boy's odds of talking are on the slim side. But the good news is that speech is not an impossibility. It'll take a lot of hard work on his part and ours. And it'll take just as much faith. I'm game, because he's my son. And there are no other options.
The doctor was straight up honest. He said that Micah needs to use his Voice on a regular basis because it'll teach him grammar and sentence structure. He said that we need to raise our expectations of our youngest son and not let him slack in anything verbal. He said that signing isn't a lifelong solution and that he'd need the Voice as a communicative device in the long run.
He asked what expectations I had of Micah's speech in the future. I told him what I'd decided long ago. Micah will talk, but he most likely won't ever speak clearly. He said that was a very realistic prediction.
Can I tell you how good it is to know what problems we're facing? For years I've been looking for answers, and for years I'd been told that he has Down syndrome. I knew it was more than that. I pushed onward, and sought answers, and visited specialist after specialist in my quest.
Finally. I know. And knowing is half the battle.
There is bad news, though. See the right side of his mouth be more animated than his left? Remember that question I had in regards to that? Yeh, still no answers there. I asked.
16 comments:
I'd love to know what sorts of activities they suggest for this stuff. I'm in the middle of reading "the brain that changes itself" and have been blown away by the stuff that has been done to improve people's sensory issues.
Mine is speechless. He recently learned to say "muh" and says it about practically everything. I consider that progress.
Knowing gives you a plan of attack. You guys will overcome this.
Not outgrown, but overcome (to different degrees), with intense (and specialized) therapy.
DS complicates it, certainly. I do recommend the book The Late Talker.
There is an apraxia conference (for professionals and parents) in the Philly area in April. I'm not sure if it's a real possibility for me to go, but you could spend the night here if you were interested. It's an hour away. I can give you details if you are interested.
That is great that you are getting answers. I hope he can give you some specific strategies to help Micah. I didn't know he doesn't drink from a cup. Goldie drinks thickened liquids through a straw cup. Right now, I see no end to this in sight. The thought of teaching her to drink from a cup makes me want to hide under the kitchen table.
Am I the only one who noticed the bare feet and the snow? :) Cracked me up given that my 2yo apparently played outside barefoot today, but no one knew it because he had on his big brother's pants and they covered his feet. Sigh.
I'm glad you have answers. That is so empowering, isn't it?
Answers are half the battle! I get so frustrated when people blow you off with "oh, it will happen".
I'm so glad you have some answers. And I'm glad to hear Micah will talk one day, even if it won't be very clear. I know you want to be able to TALK to him. Verbally. And even if others will have trouble understanding him, you and your family won't. Oh, and thank goodness for his voice. We are still working on that problem.
This is awesome.
That's good that someone could give you some answers.It is very aggravating not to know the why of something.
I love the picture of Micah in your header :)
Tara - the snow just refuses to go away despite the fact that it was almost 60 degrees yesterday. I was out in bare feet, too. It was gloriously warm.
Oh praise God. It's so good to hear an answer to the speech, even if it's not pixie dust magic. Awesome.
Apraxia-Kids is holding their annual conference in Pittsburgh this year. I have not yet seen the agenda. I am planning on attending. Have you had any success with those pictures I sent? I know you have been time-strapped lately :)
Katy-Have you read the out of sync child and it's sequel-The out of sync child has fun? LOTS of sensory information and activities..for all sensory needs. Once you get past the "theory" stuff it is parent-friendly and great activities (the "theory" is good-but I had someone tell me it wasn't as easy a read as I thought it was)
Also-I have heard this is a good book-I have not yet read it. It focuses just on the mouth:
Out of the Mouths of Babes: Discovering the Developmental Significance of the Mouth
Answers, when you have gone as long as you have with questions, would HAVE to be such a relief! I am so glad you've finally got some!
For now, let's just say Micah has a quirky smile. ;-)
Found your blog "hopping" from several others. Your son is adorable and I'm so glad you've found somebody willing to do their job. Good luck in the future and kudos for being such an advocate for your boy!
You are an amazing mama.
I'm glad you got some answers and found a specialist who really did his job! You are such an amazing advocate for you child. You keep pushing to find answers and keep working with your boy!
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