Update on Sam : Still Not Speaking

August 5th 2010 -

In two days Sam will be seven and he is still not speaking. I have come to terms with many, many things these past seven years, but this is not something I am willing or able to come to terms with. There has to be a way that he can learn to speak intelligibly! It isn't for his lack of trying, though he does tend to give up pretty easily these days. I imagine he's thinking," Why bother? I can just show them what I want." That statement in itself is kind of sad, don't you think? The fact that I have to imagine what he might be thinking just makes me so sad for him because I know he isthinking!

We have been told over and over again that his speech defecit is not due to the Down syndrome, but rather it is a resultr of the cleft in his soft palate, which was repaired when was 6 months old. Well, I beg to differ. How can the Down syndrome not be a part of it? His craniofacial structure is different from that of a "typical" child his age. His mental abilities, although they are sharp. are not as sharp as those of "typical kids his age. So when we try to tell/show him, for example, that a certain sound should be made by putting your tongue up against your teeth and blowing out a sound, well... that may not be something he can easily comprehend.

Sam's cleft palate was not discovered until he was seen by his pediatrician at two weeks old, eventhough he spent 11 days in the NICU with wet lungs, losing weight, spitting formula out through his nose.

The pediatrician who discovered it referred us to a plastic surgeon who said he would probably repair it at round 6 months. That was done. What was the next step? Well speech therapy once a week and wait and see. The plastics guy said we would have to wait until Sam started talking a bit. Then he could be tested for something or other and if he could pass the test (i.e. make an approximation of an 's' sound, then he could have more surgery to help him make the sounds properly. What that tells me is that his cognitive abilities play a large role in whether or not he will get this other surgery. Am I wrong to be upset? Shouldn't he have just as much opportunity to learn to speak as any child who has a cleft palate?

did I know there was such a thing as a Cleft Palate Team (a team of professionals who specialize in the care of a child with a cleft palate? No! Why not? Because the Down syndrome came above all else? Because no one knows about these teams? I don't know, but I am saddened to think about all the time that was wasted doing pretty much nothing.

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