Friday, November 11, 2011

Communication Breakdown

We've had a rough week. Jesse is at a point where he knows what he wants, but has a hard time communicating it. He points and goes, "me, me, me!". I have about 15 seconds to figure out what he's pointing at before he starts freaking out and having a 20 minute temper tantrum. Good times.

He has a very small vocabulary. There are just a small handful of words he uses that we can understand. I'm sure he's saying more than we know, but we can't understand him. The problem here is that he can't make sounds that involve blowing. We are talking about words that start or contain the letters /b/, /d/, /p/, /c/. I am sure there are more, but those are the main ones. What Jesse does, is he replaces those letters for /m/ or /n/. Our dog Coda, he calls Nona. That one we figured out. A ball is a "mo" and a pumpkin is a "momo", milk is also "mo". So as you can see, this translating can get quite confusing, they are all much different words that get the same label.

There's a lot of frustration around our house right now due to the communication breakdown. Jesse is frustrated because we can't understand him and we are frustrated for the same reason. When one of these cleft related challenges arises, I can help but get sad about things. I always get this feeling of guilt because I realize that we wouldn't be going through this if he wasn't born with clefts. Yes and no. Some kids go through this even if they weren't born with clefts, but of course in a moment of frustration, I don't reason that way. I also begin to wonder if his palate surgery was a success. Yes, this surgeon closed the hole, but is it working properly? My son can't blow. I know this. Maybe it's something he needs to learn, or maybe it's the muscles in his soft palate not working right. I just don't know, and time will tell. For now, we will try to use sign language as much as we can.

His speech therapist is well aware of all this, she gives us excercises to do with him that encourage blowing and making the sounds he has troubles with. I gave him a harmonica the other day to see if he would magically blow in it, but no. He held it up to his mouth and hummed. It was kind of cute, but did not accomplish the goal I was hoping for. I try random things because of our experience with the honey bear straw. I gave that to him and within minutes he was sucking through the straw, which he had never done before. Blowing is harder to teach. I blow in his face, I blow cotton balls of my hand, I blow bubbles for him, but nothing....yet! I have not given up! We will keep trying.

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