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Marcie's Diary Entries Diary Navigation: Choose A Diary Entry -------------------- Latest Entry: 8/26/99 -------------------- 8/19/99 8/10/99 8/5/99 8/5/99 7/29/99 7/27/99 7/15/99 -------------------- Marcie's Introduction

August 10, 1999

Well, today was an interesting day. Justin had his last developmental evaluation; this was his occupational eval, where they look at his motor skills and over-all physical abilities. The specialist was very nice, and Justin warmed right up to her. She had read the previous reports, so she knew what she wanted to look at. I brought my husband a lunch (he met us there), so we had Justin eat some raisins so she could watch how he pinched them and chewed them. Then he cut paper with scissors, put puzzles together, colored, stacked blocks and strung beads on a piece of yarn. In between these activities, he was playing on an indoor jungle-gym. He kept trying to jump from the top stair, then he would hang from a bar and lower himself to the ground. The specialist noted how very strong he is.

Unfortunately, strength is not what he needs. She explained to us that he has "soft muscle tone," but it isn't how it sounds. The mass of the muscles, and the strength, aren't a problem -- the problem is neurological. This is how she explained it: The brain sends signals to the muscles, telling them to contract in a certain way so that the body can do things. Then, the muscles send messages back to the brain that basically confirm that the action is being performed. In Justin's case, his brain isn't sending strong signals and isn't picking them up from the muscles well. So, when Justin wants to try to hold someone's hand, for example, his brain tells his muscles to only contract to a certain point (which is pretty loose), then his brain reads his grip as strong, instead of the actual medium strength it really is.

When a trained pair of eyes looks at Justin, they see a little boy with soft tone all over the body. His little cheeks are loose; his hands are softer and more padded than they should be, etc. Because of the neurological mis-readings, Justin has side-effects, or symptoms, that come during everyday activities. For example, he consistently shoves a ton of food into his mouth when he eats. This is because his mouth isn't telling the brain, "Hey--I am full here!" Of course, this effects his speech. He is a very bright little boy, so vocabulary isn't the issue; the issue is getting the mouth to move in the subtle ways that make speech clear and clean.

While we listened to the specialist tell us these things, Justin unknowingly demonstrated some things for us. The first was something I had wondered about for a long time: he was trying to string beads on a piece of yarn, and he was very determined to do this. About ten seconds into his efforts, he began to drool excessively. The specialist pointed it out to us and explained that it is just an indicator of how hard he has to work to get his hands to cooperate. Later, he stuck his tongue half-way out and she compared this to when Michael Jordan has his tongue out when playing basket ball.

When Justin was stacking blocks, she showed us how tense his shoulders were (he had them hunched up to his ears!) and said that kids with soft muscle tone do this because they are balancing their whole body, not just the arms. She said when he reaches his arms out, it is like fumbling around for balance unless he has his entire upper body tense. This explains why it is so hard for him to use his utensils at the table; he can't balance and have smooth motion without moving his upper body.

So, we now know that he needs physical/occupational therapy in addition to speech therapy. It is hard to understand that this type of problem isn't fixed by strengthening the muscles. We have to train him to compensate for how his brain and muscles communicate. When I asked what would happen if he wanted to play the guitar five years from now, for example, and she said he would be able to do anything he wanted -- he would just have to work harder than others to make the muscles do what he wanted them to.

I guess this all needs to sink in for a while. I am having a hard time with it because everyone has always said it wouldn't be hard for him to catch up, and now we have a problem that could affect him indefinitely. This was very out of the blue. But, the specialist didn't make to big a deal out of it, and I think this is more common than I think, so I just need to read the final report (which I will get in a few weeks) and start him in therapy. Until next time!

Marcie