Down Syndrome Clinic

We made our third trip to the Down Syndrome Clinic today. Justin really did well and impressed all the therapists and the new physician in charge of the clinic. We were able to see the PT and the Speech therapist. With the new schedule, they do not have any clinic days with both the PT and OT available, so if we have any concerns we are able to have a phone consult with the therapist we missed. (This time we missed OT.)

We found out that the blood work that was done at his year appointment showed that he has low thyroid (very common in DS) but not too far out of range, so the doctor wants to repeat the labs. She is also requesting the test for celiac disease, which occurs more frequently in people with DS. This is something I have been dreading slightly because of this is something that seems tough to handle, but if it's something we are called to face, I know God will provide. We have to go for the blood draw tomorrow, so please pray for an easy stick.

The PT was pleased with Justin's crawling, but she was concerned that he is not weight bearing on his legs. That is something he has never really wanted to do, and it is something Miss Penny works on every week, but it still isn't something he does on his own. He will not stay standing next to the couch or a table if we help him get there. He will not pull himself to standing. He will stand for a short time with help, but then he collapses. She tried several different ways to get him to weight bear, and just like Miss Penny, she couldn't get him to stand for more than short periods of time. This hasn't really bothered me, but she seemed a bit disturbed, which of course made me more concerned. I am a bit anxious to see what her assessment will say.

Since there was no OT, the doctor did a lot of those tests. It was funny since Justin had just had his OT evaluation, I could see the things she was testing and knew which he could do. The first thing she brought out was a bell, to see if he knew what to do with it, and he went to town with it! There was no doubt that he knew to shake, shake, shake that bell! It was difficult to get him to give it up so we could move on to other tests. He could find the bell under the cloth, he could pick up the small bead (not with pinchers though...), and he fit the circle into the puzzle. He could color with the crayons and fit the peg into the hole. He knew what to do, even if he couldn't always make it work exactly.

Speech was actually Justin's stand out area. The therapist was very impressed with his babbling and sounds. She actually said the words, "I am very impressed" which I get the feeling don't get tossed around very lightly or very often. By this time Justin was getting tired (and even fell asleep while we were talking) so she didn't get as much time with him as she has hoped. We discussed some feeding issues, and she gave us some things to try. We have seen her now three times, and she gives us the most feed back and most ideas in her reports, so that will be helpful.

I brought up the "Magic Age of 2" that the geneticist mentioned when Justin was born. Not because I am wanting their predictions, but because his next DS Clinic appointment will be right after he is 2 and I want to be prepared if there is some big announcement that starts out, "And now we are prepared to tell you how your child will turn out..." When both my kids were born I avoided the words, "always" and "never" for about 6 months because I just didn't think that I had enough experience with them to be able to judge that. Two years seems like a reasonable age, but I wanted to know how the doctor makes the assessment. She said that it is based on how he is doing up until then. For example, Justin was determined to be at about 8/9 months of ability when he was 13 months of chronological age. So using 8.5, that works out to be about 65% of chronological age. If he continues on that same curve, there is a scale that marks his level of impairment (a person who functions at a level of 65% of his chronological age is mild MR- mentally retarded). I am not entirely clear if that is how it usually works, or if there is a chance that he could slide up or down the scale. And I asked if there is any correlation between physical and mental capacity, or if one usually supersedes the other. She said not really, but if there is a choice, it is probably better to focus time and attention to improving speech. You know how little kids are difficult to understand, and people unfamiliar with a child need the parent to "translate"? That's how I envision it being with Justin, and that makes me nervous because I don't want to leave him in a situation in which he cannot communicate his needs or wants. I think that has to feel like abandonment.

I tend to leave the DS Clinic with conflicting emotions. I want them to fix out problems because they are the experts, but when it really comes down to it, Randy and I are the real experts on Justin. They offer some good suggestions, and I am so grateful for that. I am glad we have the DS Clinic and all the other resources we have here because I know so many places have so little to offer. I counted the days to Justin's first DS Clinic visit, thinking we would walk away with a treasure trove of information. Now I think of it more as an opportunity for them to gather information to help others. Sharing what works and what doesn't can only help those who come after us. I think we are so blessed, and I want to pass that on to others.