GB was diagnosed with autism almost six months ago. If I close my eyes, I can still feel the wash of lightening through all the nerves in my body, followed by them shutting down, leaving me with only the psychologist’s voice. Her voice faded into the background and I could no longer make out her words. My heart said NO! She doesn’t need any more difficulties to make her life harder. My head said Oh! That explains a lot.
The Dad is coming to a place of acceptance. In the fall, he wanted to sign up GB for NT soccer. I said absolutely not and because I provide the transportation, I had final say. At Challengers (Little League for Special Needs) last Sunday, The Dad thoroughly enjoyed watching GB be happy, content, and actually play softball.
I wish I could say I have found some acceptance in the last months. I am thrilled she is enjoying softball, happy at school, and making slow, but steady progress in learning new skills. So, what’s my problem? Better yet, why do I have a problem? I have a problem because I am jealous.
I have a couple of close friends with all NT kids, close in age to my girls. I am jealous of how easy it is for them to take their girls and just do things. I want to be able to do
all most of the spontaneous things they do. One of my friends called this morning at 7:30 (first off, I never can take phone calls while getting them out to school- it is hard enough when I give it 100% of my attention) and left a message that they were taking their kids and checking into a local motel for a night of swimming and movies. It sounds great- except Hope only functions at home, GB can only handle an hour or so with the big group inside, and they are both asleep before eight o’clock. I totally get how a break from routine refreshes people. I just can’t navigate this one. And yeah, I am jealous. I am jealous that they can go to a movie without having to watch the movie first and consider the triggers in the movie and if their kids can handle them. Their kids don’t have triggers. We go out to eat and they look at a menu and talk about what they feel like eating. I have to help my girls pick out food that won’t lead to a melt down or a manic. GB is pretty good. She knows what she likes and she knows what she has to avoid. As long as I am watching, she will avoid it. Hope is difficult. After eight months, Hope is still unable to choose food from a menu that she likes. Before I wised up, Hope picked macaroni and cheese three times straight. Each time the macaroni and cheese showed up, Hope melted down. What did she want to order the fourth time? Macaroni and cheese of course. The meltdown came early, when I told her see couldn’t order it.
Hope is repeating kindergarten in September. It is a good decision for her. Between all that she has gone through in the past year and where she started, I never really expected her to pass kindergarten this year. But when conversations with my friends start with how unreasonable the amount of homework their kids have is, I am jealous. They have not had to go to school at all this year to make sure a problem gets solved.
My friends NT kids can play outside in the yard without somebody sitting there and watching them. They can put in a DVD on a rainy day and their kids watch it all the way through. I am jealous of the quiet and the time to themselves they get from a DVD. My girls won’t watch a DVD all the way through even when a captive audience on a car trip.
My friends are always helpful when I have a child melting down. I am jealous because that child is never theirs. It is always mine. They are very flexible and understanding when I have to change plans at the last minute. I am jealous because I am never the one who gets to be flexible and understanding. I am always the one that changes the plans.
A lot of what I feel can be considered grief. I grieve the things that will never be easy for my kids and the experiences that they are not having because, right now, they can’t handle them. The jealousy I feel is real, too. It has nothing to do with the girls. I want to be able to just do things. I want to let things ride and be able to assume everything will work out, have a cup of tea and know without looking that the girls are fine for that ten minutes, or send a note to a teacher to take care of a problem. It is certainly about wanting things to be easier, being tired, and wanting to fit in. I have no doubt that these jealous feelings are rooted in selfishness and that I would be a better person without them. I try not to let them get too tight a hold of me. So far, though, I am unable to get rid of them.
Each morning, when I wake up, I check inside me, looking for that place of acceptance and the peace I am sure will come with it. So far, it hasn’t been there. So jealousy remains an uncomfortable inhabitant of my body, mind, and soul. I believe I am a work in progress, but God and I have a long way to go.