Chris and I have often wondered why we keep going back since there is always something that bothers us about the visit. In previous posts about our visits, I have talked about the negative ways in which they refer to Colin's development, particulary when seen by the physical therapist and speech therapist.
Every visit involves a series of measurements that are taken including weight (17 lbs. 12 ounces) height (I actually forget this number!), and head circumference (I think it was 44") in a room with the nurse. She plots his numbers on the typical growth chart as well as the chart for "little boys with Down Syndrome". Colin falls less than 10% on the typical chart for all of his numbers but generally around 50% for the Down Syndrome charts.
The visit also includes a stop in the room with the speech therapist and the physical therapist. We have been very unhappy with the PT that we have seen the past few visits because we always feel as though she is repremanding us, does not have much of a personality (especially when dealing with out cutie pie), and does not highlight any positives. She is very negative and her evaluation takes about 2 minutes (literally). The speech therapist also has a 2 minute evaluation. This time the PT that was there had a little bit more of a personality when interacting with Colin, but again, she did not focus on anything positive. Fortunately, we are in a place now where we know that Colin has some difficulties, we know that he has low muscle tone, and we know that he will get to where other children already are. Therefore, we do not need to worry about the things they say.
Also, I'm not sure if you remember from last time about the discussion of Colin's head, but the PT looked at his chart and Colin's head and said "I see he still has a flat head, are you doing anything about this?". Geez lady, some gentleness would be nice. I immediately responded that I had addressed this with the pediatrician and she did not have any concerns.
We were very happy with our time with the developmental psychologist. Her job was to perform lots of different tests with Colin during play activities. Some of these tests were things that Colin has been able to perform well on for months now, and some things were supposed to be above his age level.
Some of the tests that were performed:
- She took out objects like a cup, showed Colin that she was pretending to drink out of it, and wanted to see what he would do when given the cup. He played with it at first, and then eventually tried drinking out of it!
- She used a small baby doll and got excited about the baby. First, she took out a small comb and handed it to Colin. In my head I was thinking that there was no way he would know what to do with it since we have never used a comb on him. He looked at it for a few minutes moving it around and such and then started combing the baby's hair!! Chris and I were shocked! She then handed him an adult sized spoon which he enjoyed banging on the table. Then, he started taking the spoon and putting the right end to the baby's mouth as though he was feeding it. We couldn't believe that he was doing these things!
- She took out one of those puzzles that contains large shapes and handed Colin the circle. She pointed to where the circle was supposed to go several times telling him to put "in". We have been working on this with Colin with blocks in a box, but he hasn't been able to let go when putting "in". He inspected the circle for a little while and then started tapping the circle shape over the spot it was supposed to go in.
- She had some small blocks in cube shapes and a cup that they were in. She would dump them out several times, put them back in and then dump them out and take them away. She would show Colin the empty cup and then he started looking for the blocks.
- She took out a blank piece of paper and a crayon and handed it to Colin. His teacher told me that Colin enjoys coloring and always knows what to do with it, but I wasn't quite expecting his reaction. He took the crayon and immediately started scribbling on the page with intent, the way he was supposed to. We were so excited!
There were many different little tests that were performed and fortunately it was Colin's best time of the day. He was very happy and social with her (once he warmed up to her) and subsequently, she was very happy with his scoring on the test. What we really liked was that she explained everything she was doing as she was doing it so that we understood what she was doing.
I don't think we need to keep going, but there is something about it that I don't want to let go of just yet. I feel that there are advantages (like seeing the developmental psychologist), but at the same time, some of the things I really don't like include the fact that they are mostly negative and don't give any tips or suggestions. They point out the things that he isn't doing (which we already know), but don't really say this is what you can do. They don't give out literature on the topics, they don't refer us to research or readings of interest, etc. So, we keep going, but we will see how future visits pan out. Right now we know we are doing what we are supposed to and a little extra monitoring doesn't hurt.
Next month we will be visiting the Trisomy 21 clinic at the Children's Hospital of Philadelphia. We have been on a waiting list for months now and are excited to venture out there to see what they have to say.