I have been on Cloud 9 since Bryan came back from Sea World. We learned more about the trip and he seemed to have managed well. He even tried to push his aide away during mealtimes so he could eat with his friends. ALL GOOD. Today is a quintessential day in the life of a family with autism. Weekend was nice, Bryan seemed very proud of himself from his trip. He “did a great job” at speech and soccer. He actually slept late on Sunday. I left for work at my regular time this morning. Earl takes the boys and I usually check in with him after to see how things went. He told me Bryan was crying a lot. He cries every Monday morning and truthfully although this does pierce my heart a little, I know he will be fine by 8:15 so I am not really sidetracked by this news.
Our sitter called me at 2:15, she had just gotten the boys off the bus and realized she forgot her house key. Rather than driving 40 mins roundtrip I asked her to come get the key from me at the office. Knowing how much the kids love the vending machines at my office, I got them each a snack and with that ammunition, I headed downstairs to meet the 3 of them. Bryan was a wreck. He was screaming and crying that I should come home by 5 and that he wanted to stay at my office. It was ugly. He was pinching and I was worried. Worried he might hurt Jason or me, and to be totally candid, I was worried some work people might see. I am not embarrassed about the autism, because if you know me, you know Bryan has autism, I just don’t really want to feel those looks, the stares and the pity. The pity and the judgment are the absolute worst. I got him in the car and went back to work. The giant balloon of sea world happiness is having a slow leak. About an hour or so later, Earl instant messaged to me that Jason called him that Bryan was out of control. Two steps forward and one step back, always. Always. Someone posted an article on facebook today about having a child with autism “wrecks your life”. It was an article from the UK and this person was observing friends with their child and all of the issues they face, from failed careers, fear of having another child, aggression, extended family pressure, financial pressure, etc. The writer explored the concept of a test for autism as a precursor for terminating a pregnancy. He was posing this question to the audience. This is heavy. I can’t even conceptualize the idea of not having Bryan if we knew he would have autism. We didn’t even really know what autism was before him, it wasn’t even on our radar of things to be concerned about when having a baby. Colic, that was my fear. Oh man was I naive back then. But if we knew he would have had Downs we might have had to really consider what that would mean. That was what I was “afraid of” as I got my amnio results. Now we know a boy who has Downs in our area and I love that kid; he is loving and sweet. He has a job and is doing pretty well. People have chimed in on that article with all kinds of comments. A few were very honest, saying that they would still want to have their child, but wish things were easier and that they are not grateful for the disorder but still love their kid. Isn’t that what you sign up for as a parent, unconditional love? It’s hard and I guess that’s the thing.