Back to Reality

I'm so thankful spring break is over. Erik had two weeks off school and his early intervention therapy home visits. I truly believe he missed it all. EI only comes to our house twice a month now. As he has grown, his needs have changed. Since I added hippotherapy and pool therapy, I cut his home visits in half. I have yet to contact the hospital about the music therapy there.

Brian took the day off yesterday and accompanied us to school. Erik seemed slightly thrown off by our return to the building and his classroom but seemed happy to be back. He did his usual peering into each office window as we made our way down the sidewalk along the front of the building, making sure he didn't forget to greet anyone. The shiny metal strip across the floor in the doorway that we previously conquered once again caused him to stop in his tracks and tentatively stretch one of his skinny, stiff legs to the other side to make sure there was not an unseen edge or dropoff there. Other than that, it was business as usual. He unzipped his coat using his new football zipper pull, to the amazement of the staff, and when I took his coat off halfway, he finished pulling it off. I felt a little guilty making him perform his new skills like a trained monkey, but I love to show him off!

Brian and I dropped Erik off and walked down the hallway to the library for parent group. Since we were the first to arrive, I chose my usual comfy rocker/ottoman combination. Brian sat beside me in a folding wooden chair, and we enjoyed our coffee together. Soon the room was packed with mothers and three infants and became the delightful, sweltering hotbox I have grown accustomed to. There was no set topic. We discussed Easter and how there was no longer an egg hunt for disabled children in town. We discussed the hotly debated autism-vaccination connection. We discussed the latest and greatest treatments for eczema, none of which seem to completely work for us. We discussed how parents with special needs children are sometimes cruelly mistreated and judged when they are in public with their families (appalling). Thankfully, Brian and I have not had anyone approach us with such sage advice or comments as, "You should spank your child. That would solve all of his problems" or the ever popular, "Why can't you control your child?" Even worse is the fact that some people feel like they have every right to blatantly stare without saying anything at all. It was unanimous that we would much rather have a stranger ask what is wrong with our child rather than say nothing at all and simply stare. Erik seems perfectly normal to me when he is sitting in a shopping cart, but Brian pointed out there are now times when Erik talks loudly in stores and makes it obvious something is different. That in itself doesn't seem to bother either of us, but I feel like I should at least try to be prepared for the first time someone says something rude to me so I don't "accidentally" (a) punch/mace/kick/slap anyone or, even worse, (b) burst into tears at the supermarket. I don't want to be blindsided, and those types of things usually happen when you are most vulnerable. However, people have been more than kind to us so far and seem to naturally fall in love with him.

Someone made a huge generalization about children with Down syndrome being "so lovable" and "happy all of the time," and I winced as I looked at the mother dealing with Down syndrome. These comments sounded slightly condescending to me, as if she were talking about fluffy puppies, not children. The other mother politely explained that her child has violent outbursts and bashes his head into the wall at times. I feel her pain, as people often view those with Williams syndrome as being happy 24-7 with no worries in the world. In reality, our children become just as frustrated, if not more, with things as any other child would. They are perfectly aware of the fact they are wrong when they are asked to solve simple puzzles or problems and are unable to make their brain see the answer. How frustrating would that be? Adolescence can be a desperately lonely time for someone with Williams or Down syndromes, and many have no close friends. Even in special ed parent group, there are misconceptions about each condition and syndrome from one parent to the next. I don't pretend to know much about Down syndrome, but I could definitely read this mother's body language and see she felt it was important she communicate that life at home was a genuine struggle at times. These kids are human beings like anyone else with complex emotions.

The typical babies in the room at parent group nursed, played, cried, and babbled during our session. They are all adorable. Brian and I marveled at how one tried to put one foot in front of the other when he was held upright at 6 months of age (something we did not see in our own child until much later). I chose not to hold a baby this time. The last time I did, I felt surprisingly emotionless about the brief experience, and my shirt smelled vaguely like fried food all day. Gross.

When it was time to leave, Brian and I went up to the classroom and found Erik in front of a little red plate that obviously once held chips and salsa. Bev reported that once he got into these particular chips, he ate with gusto. The boy is officially a salsa lover. It's perfectly natural, as I ate probably 45 gallons of it when I was pregnant with him (hot, of course).

So life goes on now. We have a financial planning meeting this evening, a home visit tomorrow, and hippotherapy on Friday. It's nice to have things back to normal again, and I am looking forward to a weekend at home.