There is little that I can add to the conversation that has not been written before with far better prose. In fact, my assessment of the situation and the events that lead up to this morning is, at best, naive and more likely, out right rejection of the plain truth.
My oldest daughter, of 3 years, has Autism.
Well, I’m so new to this that I don’t know what I’m even supposed to say…
Does she have Autism?
Is she is Autistic?
“On the spectrum” seems rather pejorative.
If I say my daughter has a learning disability that’s somewhat misleading since it does nothing to address the missed social cues, difficulties with communication or negative behavioral traits.
She doesn’t have Autism. That should be reserved for kids stemming in the corner of the room.
There I go. Falling into the trap of us vs. them. As if somehow THEY are different. Somehow they are only the sum of the labels we put on them. Those people, the ones with Autism. Will you see my daughter that way? Will I awake tomorrow and see her that way? See her for a disease, a label and not a bright, talented, creative young girl?
We played at the park tonight. My pain was stamped down by fake smiles and words of encouragement, she knew it too. But she played along. When Mom came around we showed off how well we can climb now.
She can’t tell us what she wants yet.
I am a bad parent. Everything I’ve done before. The times I’ve yelled. The times I’ve hauled her off to her room for pushing her sister. The times I’ve held her tight to keep her from slamming her head on the ground as she threw a massive tantrum. She’s been telling me the whole time that she couldn’t tell me. I never bothered to listen.
I am ashamed.
I should have pushed sooner. She’s normal. Just a bit delayed. “This is all about the speech” I would say as I dismissed my wife’s concerns.
The doctor told us he was disappointed in them, the pediatrician, the speech
therapists, for not getting us to a behavioral therapist sooner. I’ll tell
you how that came off … he was disappointed in US. We didn’t know better.
We still don’t.
He just sat there and said the words that we came to him to hear. The words we paid good money to hear him say. “My diagnosis” he began …. “is Autism”.
I keep coming back to knowing the truth. We’ve known all along that things did not feel right. The panic she exhibited at her first birthday party when everyone sang Happy Birthday. Things were wrong then. Well not “wrong” … every time I say that I put her and everyone that’s ever been diagnosed in a box with a giant fucking sticker on it that reads “AUTISM”.
I’m mad. She’s worried. She knows though that I am writing about this. The scotch that has been knocking the edges off this sharp pain is working for me. I’m sorry I’m hitting the keys so hard. I’ll type softer. Please don’t worry. Our daughter will be OK. She is safe. We know now.
Actually, we don’t know a fucking thing. The only thing we have is an open door. We have options, and treatments, and 20 hours of school, and behavioral therapy and I’m typing loud again. I’m sorry.
What about #2. The other daughter. The one who’s birthday is going to come and go without celebration because we will be sleep depriving the one with Autism so she can get an EEG on the first birthday of #2.
The second one, she is strong. She knows it. She doesn’t understand how much she will be helping her older sister learn. But I can tell you she will be strong. She is strong. But this can’t be her burden. She can’t take a back seat to her older sister’s AUTISM.
That word. Have you read it enough?
AUTISM AUTISM AUTISM AUTISM AUTISM AUTISM …
Where’s my scotch. Maybe some more single malt will cut out this cancerous sore.
I just wanted normal kids. I said it. I don’t get it. I don’t get what I wanted here. I want to blame someone. This has to be someone’s fault.
Each breathe, slowly bobbing the laptop up and down. My keystrokes are softer. The feverish hammering subsides.
I’m sorry. I was not supposed to be a bad parent. I don’t know how to do this. I don’t know how to keep people from feeling sorry for her. Want to pity her. Fuck them and fuck you. I’m sorry. I don’t mean that. I do … Fuck Me, actually. For every time I’ve put them in a box. The disease and the person are not the same thing. “The person is so much more than the disease” they say. I guess so. My little girl, she’s the one with the disease now. The label.
Part of me hopes. You know, she can decide later if she wants to wear that label. For now we’ll keep it cause it will let us get you help little girl. It will let us get us help. We need help.