Thursday, July 17, 2008

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


Sarah said...

This is definitely an interesting question. The lack of all the brain components definitely makes things difficult. I can never get direct answers from Keturah's Neurologists either, other than, "The brain is very complex, and there's no way to tell which parts of the brain work, and which ones don't." I hope you will have a good lunch with the Dr. when you are back in StL. I really hope her answer will be able to give you peace. The laughter clip was truly precious!

Faith said...

Jack communicates in other ways, correct? The reason why I ask is I've been concerned about Faith's lack of communication lately. She doens't make noise b/c of her airway but she doesn't communicate non verbally either. She was evaluated a few months ago and her receptive com. level was the same as a 22 day old baby. (Don't you love how they come up with those numbers?) I really believe this is due to brain damage caused by one of her many hypoxic events. So I too share in your frusteration and must be espeically troubling for you since Jack used to talk. :( I hope you find some answers soon.

julie w said...

Very bewildering. I can understand your frustration, it is something I wonder about with Sam too. I hope that Jack will soon be able to talk to you through his eye gaze system. ((((HUGS))))

Melisande said...

Hugs, Ann! We'll be making a trip to SLCH the end of August. Definitely want to see you in October if I can!!

I discussed the cerebellum issues with our rehab doc who sees Donovan outpatient once in a while. She says the cerebellum is more to do with coordination than intelligence as it were. I would say that is true for Donovan too.

Anonymous said...

You know Christopher keeps asking me why Brian doesn't talk and I really have no answer to that. He can understand what we tell him, so what part of his brain isn't allowing him to put sounds together to make words? I should look into brain research a little more closely to try and understand.

I love that you are getting out more as a family. I bet Jack really enjoys that.