When my son was 6 and diagnosed with autism. The Dr. told me that I would be fighting for him forever. He said "a mild developmental disorder is like a little nuclear war" people hear high functioning or mild or any other diminutive term and think no big deal. The reality is that it is still a very big deal. A little disability is still a disability, and a little neurological disability still impacts all the things that make a person who they are. How the world looks, how they sense pain, and process emotions.
I have had a horrid week. I have had appointments every day, I have had meeting with the school. I have had a police officer at the door asking about my sons outburst which I explained was a panic attack. The officer left dumbfounded that he had been called to do a well check. He has slept the afternoon away in school 3 days in a row. I now know its because he is spitting his anxiety medication out into water. For goodness knows how long, long enough for him to totally fall apart that's for sure.
That little war in his brain is there when he's frustrated, or overly happy, when he is tired or hungry, sad, or feels slighted, whether real or imagined. All those devastating misfires color his life. Whether it be a misinterpretation of a face, or hearing a firm voice as screaming. Even being happy is over zealous, like a shaken 2 liter spouting in your face. He is never just your average kid, hes the smartest, or the meanest, or the funniest one. This creates great hurdles in getting people to take me seriously, they cant picture that he might end up screaming at them or curling up in a ball on the floor. Only why would I say that if it wasn't possibly going to happen?
When people meet him he is the most engaging child in the room. I take him to school, or camp, or a sleep over and I say "he has autism, he has meltdowns. He sometimes says cuss words obsessively". I get brushed off , told how fine he will be, how smart he is. The outcome is inevitably that I get a frantic call or furtive glares as he has actually done one of the things that I had tried to tell them he would do. When someone tells you a truth that would be hard to admit to, maybe its true, maybe its not cold cynicism but rather their unkind reality. The consequence of thinking that parents are always excusing their child's behavior with a label is that the child is in turn held to expectations they will never be able to meet. Time and again my attempts to take a step back form my child are devastating.
Imagine you scout out a new school, you meet with them, say my son has autism, they look at his assessments, assure you that they have all the things that are needed to meet his needs. They show you the class room, they tell you all sorts of things that they can do for your child. About a 2 weeks in he has a complete melt down, he attempts to run away, says inappropriate things to other students. Does the school consider his disability valid? Do they account for it in his behavior? Do they accommodate the behavior? No they are, shocked, just shocked at the severity of his reaction. The psychologist explains that he is displaying anti-social aberrant behaviors. Just imagine how much you would want to scream! They literally look at you in awe and say "he didn't even know the name of the child that he struck"
I want to be a million other things, but I don't get to have a job, I didn't get to finish my bachelors degree. My child has a nuclear war in his brain, with mushroom clouds, and residual radiation and a daily reshaping of the universe. It is inescapable. All I really want is to know that someone else out there in the world is willing to accept that reality. As he rounds the corner into being a preteen, I am beginning to be plagued by what the future looks like for our whole family.
No comments:
Post a Comment