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Milwaukee's Daily Magazine for Wednesday, Nov. 26, 2014

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In Kids & Family Commentary

Emma, Jayne and Jackson Hickey.

Meeting autism at home


There are a lot of emotions that roar through someone, including me, when you hear the word "autism."

Fear, curiosity, sympathy, wonder, sorrow, are all in the ballpark of response to the concept of autism. We may have heard about the autism spectrum and we may have seen one of those television spots where someone with autism plays piano like a genius or can do complicated mathematics problems at the snap of a finger.

But there is nothing like living with someone with autism, even for a brief time, to understand both the difficulties and opportunities of the disorder.

I have a great nephew, Jackson Hickey, who is the 15-year-old son of my niece Jayne. We recently spent a week together on a beach in Charleston, S.C. Jackson has both Down syndrome and autism. It was a fascinating, educational and emotional experience. I would never even come close to saying I understand the disorder and the effects on an individual and a family, but it was a window that gave me a glimpse of an rarely understood disorder.

Autism is a neurodevelopmental disorder characterized by impaired social interaction,verbal and nonverbal communication, and by restricted and repetitive behavior. Autism affects information processing in the brain by altering how nerve cells and their synapses connect and organize. But it's not well understood how this happens.

Here's what Jackson is like.

The beach house where we stayed came with a long table with seating for a dozen. Jackson sat at the table almost continuously, an iPad in front of him and monopolizing his attention.

He played with it, being able to translate his schedule for the day from pictures in one program, he watched videos of professional wrestling that captivate him and he plays a FIFA soccer video game.

Jackson's movements are erratic. You can see him respond to what's happening on his screen. There are moments when he rises from the table in what I think is exultation or anger, but I don't really know, nor does his mother or his stunning sister, Emma, a 17-year-old who is a caregiver well beyond her years for Jackson.

Jackson's head bobs as he plays with his Lego men or the small figurines of wrestlers or warriors. He becomes totally engrossed in these simple pleasure.

I found myself puzzled by Jackson. I wonder how the electrical impulses in his mind are so different from mine. Jackson is not an empty vessel but a fully operational and functional mind, just operating and functioning in a way we don't understand.

Jackson's Down syndrome, a genetic disorder, is obvious, not only from his appearance but from the occasional displays of tenderness, for example when he says hello to my 2-year-old grandson Casey. There is an unexpected sense of warmth that he exhibits and that only adds to the mysterious wonder about this disorder.

Nobody seems to know definitively what causes autism. Theories abound. Jayne thinks it has something to do with vaccinations he had at a young age. But nobody really knows.

The learning experience for me was not just about Jackson and his disorder but about his mother and sister and the way they approach this whole thing.

If you can find a phrase like hyper-aware matter-of-factness that might capture how they deal with Jackson. There is no real coddling or obvious protective behavior, although I'm sure those emotions are strong.

Instead they have what can best be described as tricks. They try to make sure that there are no surprises in Jackson's life. If brushing teeth is on the menu, Jayne gives him a 10-minute warning, a five-minute warning, a one-minute warning and then its time for Action Jackson.

If they are headed to the beach Emma asks him early about bringing one of his little men, then she asks again and once again. It seems like Jackson responds with relative equanimity when something seems to be on his schedule.

The CDC estimates that about 36,000 children out of four million children born in the United States each year have some form of autism. The whole thing has always sounded to me like a sentence to unbearable familial stress and a hopeless life for a child.

Spending a week and lots and lots of hours with Jackson has taught me something different. There is nothing about this that is unbearable. You need to learn some unique skills but hopeless is not a word either for the family or for the child.

I guess I feel sorry, a little bit, for parents and siblings where an autistic child is present. But my incredible level of sympathy has now devolved to a new level of understanding and appreciation for the gifts that everyone brings to the table of life.

Jackson calls me "Bigdog." Whenever we see each other he just says "Bigdog." Then, if I offer, we touch knuckles. It's always a moment of pleasure for me. There is, however, one very troubling thing for me with his autism and one thing I would change if I could.

I don't know if Jackson knows how much I love him, not because he has autism or Down syndrome, but because he's Jackson.

I'd like to think he knows that.

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