A significant portion of my time each week is spent at various therapy appointments with Aaron. He currently goes to therapy four times a week for an hour each visit. He goes to physical therapy, occupational therapy, speech therapy and feeding therapy. Before Aaron was born, I didn't have a clue why all of these therapies might be necessary. After three years, I can say I understand why they are absolutely essential.
In an earlier blog post, I mentioned that the average life span of a person with Down Syndrome has increased from age 25 in 1983 to age 60 today. That is over double the lifespan in less than three decades. Does anyone else think that is just incredible? Can you think of any other condition that has shown that kind of improvement with no medication or vaccine? So what has happened in the past three decades to make this possible?
Personally, I think it's because doctors, researchers and even parents finally woke up and realized that people with DS are capable of learning and contributing to society. Rather than just being allowed to survive in institutions, people gave them to chance to live and grow into worthy members of their communities.
So, now that I'm off my soapbox, I wanted to explain why we spend so much time going to therapy. Aaron started therapy when he was six weeks old. Every state provides an Early Intervention program that helps parents of children who are developmentally delayed get connected with therapists. These therapists typically come to the family's home and provide therapy for the child to teach them the skills they need to develop. When he was six weeks old we started with physical therapy once a month. His therapist would come to the house and show me how I could help him by using infant massage, joint compressions and various other tricks to improve his gross motor skills. With her help, he learned to hold his head up, roll over, sit up, combat crawl, crawl on hands and knees, pull himself to stand, cruise along furniture and finally (about six months ago) walk. There are so many other skills he had to learn to achieve all of those goals that it still amazes me. Things that most kids do automatically and parents don't even notice are things that we had to put significant effort into learning. Each one takes time and kids can't do things like sit, crawl or walk without mastering all of these smaller steps first.
He now goes to physical therapy at a clinic because they have more equipment that they can use to work with him and it's good for him to get out of the house and interact with other kids as well. He is working on walking up and down stairs and reaching up to grab things without losing his balance. He really has made a lot of progress looking back on it and his therapists are a big part of that.
As for his other therapies, his feeding therapist is working with him on his sensory issues with his mouth and helping him learn how to feed himself with utensils. He has no problem feeding himself with his hands, but using spoons and forks is still pretty tricky - and messy. He has some serious aversions to certain sensations in his mouth and flat out refuses to let me get near him with a toothbrush. Although I am happy to report that he went for his first dentist's appointment this week and it wasn't a complete disaster!
His occupational therapist works with him on fine motor skills. We got a new OT just a few months ago and since then he has made amazing progress. He is finally able to make a pincer grasp with his fingers and is actually doing phenomenally well manipulating small objects. This new OT has a lot of experience with children with sensory processing disorder and has several family member with Down syndrome, so he is a great match for Aaron.
His speech therapist obviously works with him on speech, but it is a lot more than teaching him how to talk. She works on total communication, so she is teaching him to verbalize, sign and visually identify objects. He has made a lot of progress in this area recently as well. He is learning to identify some of his colors by signing, trying to say the words and pointing. It's so amazing to see that he understands when we talk about the color of something. If you think about it, color is sort of a difficult concept for a child because it is not an actual object, it is a description of an object. But he is getting it. And it's fantastic.