Why Can't He Talk?

I’ve been thinking a lot lately about why Jack can’t talk. There was a time when he could say a few words (very few), but after his anoxic event (a subject that’s still tough to recall), he lost the ability to say even his few words. He was also signing a bit before his event, but he no longer has the ability or strength to lift his hands enough to sign. For a long time I wanted to believe that Jack’s inability to talk was due to him being on a vent. However, this summer at the trach conference, I met Jacob – an amazing little boy who is also vent dependent and who can talk very well.

Jack has a form of muscular dystrophy called Muscle-Eye-Brain Congenital Muscular Dystrophy because all three areas are affected. The muscle issue is obvious. Jack was also born with congenital cataracts. Jack’s brain was affected in that he has moderate diffuse cerebral atrophy and absence of the inferior vermis and cerebellar tonsils. However, according to Jack's neurologist, when you are born with missing parts, your brain is much better at working around the deficits, and the impact is less than if the same brain parts were affected later in life. So, while it's likely that Jack may have some cognitive deficits because of his brain anomalies, he is clearly not a PVS kid. As one of Jack’s doctors recently put it “Although I can see where you might find some similarities, you’ve got to know that Jack is as far from being a PVS patient as George Bush is from being a good president!” (we were discussing an article about the feelings of pediatric nurses who cared for PVS patients). Jack is clearly tuned into his environment, he displays emotions appropriately and, if you spend enough time around him you’ll get to experience his very subtle, but very astute sense of humor. Jack is considered moderately MR (mentally retarded) - based solely on his inability to communicate. Yet, I know of many children who are MR, cognitively delayed, developmentally delayed, or whatever you choose to call them, who can talk quite well. They may not be able to write their name or multiply numbers, but these children can carry on lengthy conversations. Why can’t Jack? Where's the glitch?

I’m sure I’ve asked Jack’s neurologist in the past why he can’t talk, but I’m not sure I ever got a straight answer. When we go back to St. Louis in October, I’m hoping to meet up with Jack’s neurologist for lunch. She’s always been nice enough to go to lunch with me so that I can have more of her time than the 5 minutes I get during our appointment time. I’m going to ask again “why can’t Jack talk?”

Regardless, we continue to appreciate his smile and his laughter.

~~~~~~~~~~~~~

God's poet is silence! His song is unspoken,
And yet so profound, so loud, and so far,
It fills you, it thrills you with measures unbroken,
And as soft, and as fair, and as far as a star.
~Joaquin Miller