Status Report #2

The appointment with our new PT went well yesterday. Ms. G depantsed Erik and let him frolic in the therapy room with the various toys while she watched his legs work. She also evaluated his spine. All of the obnoxious, noisy toys were put to the side by the time we entered the room, which I found quite thoughtful, and although Erik was initially unsure about the squeaky horn on one toy car, she worked with him and he was honking it himself by the time we left.

We will begin therapy in the pool next Thursday. I'm a little concerned about how I am going to cram three PT sessions a week into my already maxed schedule, but I know it's best for Erik. We will alternate pool therapy and hippotherapy in one therapy session each week from now on, in addition to his early intervention program (EIP) therapies twice weekly. Erik will straddle a horse for the very first time in two weeks. Insurance will apparently not cover everything, but at this point I'd sell my own blood if I had to for this kid of ours. The facility we are using features a trampoline, goats, cats, dogs, and another therapy room with equipment. It's kind of like Joe Dirt meets Scrubs. Some of the children who have used this facility have eventually competed on horseback in various competitions against children who have no disabilities whatsoever. As Ms. G told us, "Everybody is the same on a horse."

Some of the muscles in Erik's ankles are atrophying from disuse in his orthotics. Ms. G told us it was time to let him go without them for a little while each day. If I had not gone outside of EIP, I would have not known this, so it is already paying off. I missed my little boy's feet so much and forgot how adorable they are. We will allow him to play without orthotics on at home, but he seems to need the extra stability when he is away, as he seems overwhelmed physically and mentally in those environments.

I am officially entering a new phase in all of this. It's a new feeling of isolation, and I'm halfway embracing it, as I know it's part of this natural but messed up process, and most of it will pass eventually. All of these phases I have experienced I have successfully plowed through, although they all visit me again from time to time for various lengths of time without warning. This particular feeling stems from living in a world that is generally not geared for or gives a lot of value to people who are different. Period. While it is time to look beyond myself and reach out to the world again, it turns out I don't like some of what I see at all. When I grew up, I felt just different enough that I didn't feel I truly fit in anywhere, although I pretended like I did, and a typical childhood was hard enough without living with a severe disability. I see a long, challenging road ahead for Erik. Frankly, being around typical kids is still a special form of torture to me. I feel lonely and isolated unless I'm in the middle of a special ed class anymore. It's ironic because that was the last place I wanted to be at the beginning of all of this!

On the other hand, though, I have been in contact with two new families here in the state with little boys like Erik, and I can already tell I will like them immensely. We will hopefully meet for the first time in April at Sophie's Run. At this particular event, I find it impossible to feel isolated or alone.

And that makes me smile.