Yesterday on the Rarer in Girls Facebook page, there was a great discussion about times when we parents feel down about our children's autism. It made me think about how at times, it seems like we are being told that we aren't supposed to feel that way---that we need somehow to always stay upbeat, positive and forward-looking, that we need to never stop and feel sad or discouraged. I find blogs like that sometimes, and to be perfectly honest, they are sometimes tough for me to read, because they make me feel very guilty that I can't maintain that level of positive feelings and optimism. The discussion yesterday made me think. I think it's only human, only natural, for us to feel discouraged, sad, down and even despairing at times, and we should not feel like that makes us bad autism parents.
I think back a lot to a day when my younger son, Freddy, was almost 11. I woke that morning and checked on him, as his asthma had been acting up the day before. As soon as I saw him, I knew he was in very, very serious shape. Every breath was a struggle. His chest was drawing in horribly with every breath. We drove at top speed to the hospital, and within a minute, he was in a room being treated. The whole day was like a nightmare. They couldn't get his attack under control for a long time, and wound up giving him an IV of magnesium sulfate, a drastic measure. He was admitted to the hospital. That night, his heart rate showed signs of a possible heart defect. I remember sitting by him as he fell asleep, still breathing with trouble. I don't think anyone on earth would think that it was wrong that I felt sad that night, scared, overwhelmed. Of course I had some grateful feelings---that he was being treated, that we made it to the hospital, that he was alive. But if someone had said it was wrong for me to think "I wish he didn't have asthma. I wish this hadn't happened"---well, I don't think most people would think that. And I don't think most people would say that me feeling that way meant I wished I didn't have FREDDY, that I wished he wasn't himself.
However, with Janey, with autism, people sometimes do think that. They think that wishing she didn't have autism, wishing that none of the events that autism have caused had happened, means that I wish I didn't have JANEY. And that is not true. That is so far from true that it makes me angry to even think about. Autism is NOT Janey. Autism is something she HAS. My own personal beliefs are that autism is an auto-immune disease, in Janey's case. But whatever brings it on, it's not a choice. It's not how Janey has decided to be.
Another parallel between autism and asthma is that there is a huge spectrum. There are people with mild asthma, asthma that has never required medication, that only shows itself after cold or after a lot of running. Thank goodness, that is what Freddy's asthma had evolved into. If you have a child with that kind of asthma, you will see it very differently than the asthma that possibly could have taken my child's life. Janey's autism is on the more severe end of the spectrum. I can hope and dream and aspire to many things for her, but in reality, they are unlikely. It's very unlikely she will ever live on her own, or marry, or have children, or hold a job. I can hope for these things, but in many ways, I think that does Janey a disservice. It's denying who she is and what she needs to be happy. And even if those things happen, that doesn't change the RIGHT NOW. If I had said "I won't take Freddy to the hospital for this horrible attack, because that would be denying that he might someday live a life basically unaffected by asthma"---well, I don't think he'd have been around for the life he now leads. Being realistic about Janey's autism lets me meet her where she is right now.
The discussion on Facebook talked about the sadness of dreams for the future being changed by autism. I think this is a very valid reason to feel sad. It's not unique to autism, but the level of changed dreams is what might not be understood by some people. The term "dream" might be the issue here. When I say I feel sad that my dreams of Janey one day marrying, becoming a mother, graduation from high school or college, getting a job will not be met---those are not really dreams. They are well within what most of us do in life. It seems paternalistic, judgmental, unrealistic---all those things---for anyone to say we shouldn't feel sad that our children will not do the things that most people do. It's very different than if, for example, I'd had a dream Freddy would be a famous runner and I was sad his asthma would prevent that. Most of us aren't going to become famous runners, and although I won't judge anyone's sadness, sadness over a dream like that not coming true isn't the same as sadness that my daughter will most likely never know the joy of being a mother herself.
The bottom line is this, in my eyes---being sad about a child's autism DOES NOT MEAN YOU DON'T LOVE AND VALUE THE CHILD. I put that in all caps because I AM shouting it. I love Janey as much as I could possibly love anyone on earth. But I am sad, so often very sad, about the limits that autism has placed on her. And I won't apologize for that.