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Apr 2 2014

As My Son Turns 18, Looking Back On a Life With Autism

By at 10:20 am

hannah-brown

When I turned 18, I had my first legal drink–a strawberry daiquiri–at Windows on the World, the bar/restaurant that was located on the top floor of the World Trade Center.

When my oldest son, Danny, turns 18 next week, we will take a train from Jerusalem to Haifa, and then we will ride the Carmelit subway for a good part of the day.

Danny loves trains and has ever since he was diagnosed with autism when he was 3. In addition to marking his birthday with a cake in the evening, his father and I will become his legal guardians that day. When he was born, there was no World Autism Awareness Day, but it’s hard not to see the irony in the fact that April 2 is just six days before his birthday.

We moved back to Israel about a year after the diagnosis because Danny’s father is Israeli and wanted to head back home. Because of his autism, Danny won’t be drafted into the Israel Defense Forces, like most 18-year-olds here, but will stay in a school he loves, where he is learning and progressing. When he finishes up there, at the age of 21, he may or may not be high-functioning enough to serve in one of the IDF special-needs units.

When my ex-husband and I first thought about moving back to Israel, I thought (and worried) a lot about what it would be like to have my sons drafted–Danny has a younger brother, now 14, who was born six weeks before we received Danny’s diagnosis.

I never guessed that I would envy mothers whose children are healthy enough to serve as soon as they finish high school.

Danny

When I imagined having children, I thought about all the conventional milestones: a baby learning to walk and talk, a child starting first grade, a teenager graduating from high school and going off to college, and an Israeli boy joining the army.

Because of Danny’s autism, the milestones have been very, very different.

He is considered medium-functioning, and so he can talk, read and write, and is actually bilingual, which is unusual for people with autism. He has a great smile and has many skills– swimming, horseback riding, singing, playing piano. But he still can’t cross the street on his own–he is simply too impulsive. A typical phone conversation for him is, “Hi, I love you, bye.” There is nothing else worth saying, in his opinion.

When he learned to lie, that was a big moment, because it showed he understood what is called, “theory of mind,” that other people know and want different things from what he wants.

Another recent triumph was when he overcame his fear of vacuum cleaners. For years, he was scared of the noise of the vacuum cleaner, and for years I told him that they wouldn’t hurt him. They cleaned the carpets. They just made a loud noise. They were good things. Eventually, he internalized this to the point where he now loves vacuum cleaners, and vacuums the house every day, as many times as I will let him.

He has changed a great deal in the decade and a half since his diagnosis, but my role hasn’t. Just as when he was 3, I am responsible for making sure he learns, stays safe, and doesn’t get too frustrated when he can’t understand the world.

Although he knows how to read, he still wants to be read to before bed, and tucked in, like a much younger child. When his routine changes, even in a simple way, he is terrified and nervous. He likes talking about the cats we have and the cats we used to have. And he likes to be told before he falls asleep exactly what his schedule will be for the next day.

A long time ago, like many parents of children with autism, I believed the promises of experts who told me that if I followed their program religiously, he would be mainstreamed within two years. Or three.

Now I know that this terribly hard and also very rewarding work of raising him will not end any time soon.

I also know that if he were a typically developing teen, I would be fretting, like my friends here, about what he would do in the army, or, like my friends in America, about what his college life would be like.

I would be talking about the empty nest. Maybe I would have a midlife crisis.

Instead, on his 18th birthday, I will wake him up by playing a CD of cowboy music and we will head out for our train rides. Back at home there will be some cake, and vacuuming.

I know he will never have a daiquiri at Windows on the World, but I still hope and pray that a drink with friends will be part of his future–someday.

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