Today, until tomorrow

The front door of my house

I was such an easy kid. Ask my mom. Happy, mostly, at least until middle school. Not a rule breaker. An awkward people pleaser.

The woodwork in the door way of my son's closet has the halides of the periodic table carved into it. He did it when he was five. "What a smart kid," they tell me. "How am I going to get this out of the woodwork?" I think.

For three years we had BCBAs and ABA therapists over the house. You know, on top of working a job that had me on call about a week a month or working an extra half a day managing a staff in India, had to keep the house clean enough for these young women to come into our house, tell us how to be parents. Not covered in our insurance anymore. So much for autism laws. There's a loophole. Insurance companies find a loophole.

"Super heroes are stupid," my son says. He plays with a shirtless Pablo Picasso doll covered in marker. I see writing on my basement door "Here Comes the Son." I must not have gotten all the crayons picked up the night before.

I wake up on the couch most mornings. My daughter refuses to sleep alone. I end up downstairs. Trust me, we've tried everything.

Sisyphus pushes a rock up the hill, continuously. I have three floors in my house. I can only clean two of them a day when I work. I can only clean two on a weekend when I am with the kids most of the time. When I clean one floor, one is bound to become trashed, ending with my children having a breakdown when i tell them to clean up. Threatening to throw away toys, dolls... I've done it a few times. They remember exactly what I threw away.

My recently-turned six-year-old daughter watches youtube videos of other young girls playing. Later she'll mimic their conversation. You wouldn't notice it. She's just acting it out. "I love you the most of all," my daughter says to me. "I know you do," I respond.

My wife has been crying. Her eyes are red. It is not allergy season. She goes to her room. Bookbags and folders and shoes and jackets are flung on the stairs. The kids ate at 11:00, so they are starved by four. An hour later my wife emerges from the bedroom. "I don't know what to do," she says. She's been on the phone with social works, psychiatrists, our advocate.

We are at the football game. It's too loud. Both kids want to leave. It wasn't like the time I was working at Fenway Park and it was empty and my son ran around the infield without a care - he was young. Who would have known differently? But at the game they cover their ears. My son puts his hands all over me. He pulls on his pants, eats peanuts off the ground. I try to talk to him. We'll leave at halftime.

We've been through two special education directors, a lawyer, an advocate. Two schools. The teachers and staff, they always care .They usually do the right thing. So do the service providers. Doesn't matter.

"An IEP is just a piece of paper," said the Superintendent of our town's school system said. Try telling that one to a lawyer. We have a para for our son. We have a 504 for our daughter. The services on the IEP are gone with the new special education director. Legally it is a PPT decision to remove those services, but they just disappeared. Is the new special education director incompetent? Or is she trying to screw us over?

We say autism. Some people say Rainman. Some relatives don't even know, ones that know the children. And you'd think in time they will know. I'm embarrassed a lot. We've had to leave playdates. I've met up with friends and left early. Their sons do boy things. Normal things. Why can't they be normal kids that watch TV? So creative, it's a curse.

As I pick up my kids, the assistant principal meets me at the door. My son is in the office. I want to say "he did WHAT?" when he tells me. At a festival at school other kids tell me about my children. It's not always good things. The crying. The disruption of class. "He's the smartest kid in class." "She's the kindest girl in class".

Everyone says their kids are unique, but no one I've met has ever said my kids aren't. So much potential there, but so much room for error as well. Smart kids. Creative kids. Wild kids. Bad kids. Good kids. They could be anything or they could be nothing. Or worse.

Turned my back for two minutes to eat my lunch. It's the end of the November and they are now playing in a stream. I don't have more clothes for them. How am I going to get them home?

You love them all the same. You are a parent but with no margin for error. Make them great today. That's what I say. Don't take the lows too low but live for the highs.

All the reports are that the kids were great today. I didn't have carry my daughter on to the bus kicking and screaming. My son was happy when we got home and he's doing his homework on his own. Then, the kids play together. They put on matching outfits and call themselves twins. They play a creative game where they have invented a time machine. My daughter imitates the loving things I said to my wife and pretends that her dolls is her baby. Today has been great, until tomorrow. Who knows about tomorrow. At least we won today. 

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