Autism In Real Life [Guest Post]

Miss Suzy is a writer, mother of three and step-mother of two. She blogs about the quirky side of family life, raising a child with special needs, and occassionally, doles out  a pearl of wisdom.

I watched Rain Man at the movie theater in 1988, when I was in college. I was years away from marriage and children. I had never heard of autism beyond a few “freak show-styled” Savant stories that made me think, briefly, about the wonders of the human brain.

I never thought that it was really real — real in the way that affects regular families, comes with medical problems, and creates lifetimes of challenges for people and their families.

I never thought it would affect me or anyone I knew.

I never thought I would live day in and day out with it.

I never thought I would love someone with it.

I never thought I would care.

I didn’t expect that I would think twice about autism once I left the movie theater blinking against the sun, and wiping the popcorn grease down the legs of my pants, and heading home to my desk for some studying.

Years later, after giving birth to two uncomplicated daughters ( there’s an oxymoron if I ever heard one), I assumed my son, when they placed him in my arms, would simply grow up and do what boys do.

He would play Pee on Mom when I changed his diaper. He would turn Barbies into guns, would toddle around pulling the cat’s tail, and shadow his daddy. He would grow up to play Tonka Trucks, Legos, Lincoln Logs, mud pies, and build forts and bike ramps.

I expected that I would nag him to wash behind his ears, pick up his socks, and put his skateboard away.

I thought I would spend time in the ER for stitches and broken bones.

I assumed he would play football, and soccer and baseball, and stroll down the school halls confident, funny, and a master of his words.

I assumed my son would protect his sisters, and pump iron, surf, and work on cars.

Instead, within five minutes of his birth, we were ushered down another avenue. I suspected something was wrong with him when he puffed at my breast instead of nursing, and an hour or two later, while I was holding him, he performed a magnificent hypoxic feat that turned him a shade of purple I didn’t know existed.

Within five minutes he was in the NICU, where he stayed for some days.  This was the introduction to our battle with a medically complex child.  We discovered he had a cleft palate. He had his first ear infection at two weeks of age and had one every two weeks until his palate repair at nine months. His first year was also sprinkled with a few pneumonias, a case of salmonella, chronic constipation, failure to thrive, chronic torticollis, calorie enhancement packets that cost hundreds of dollars for his alarming and steady weight loss, hearing deficits, late speech, late milestones, a hernia repair, and many other things.

I thought he was on the autism spectrum by the time he was three, and it took us nearly three years after that to get a diagnosis.

Now, years later, he is largely healthy.   Some of the things I dreamed about doing for my son have come true.  I do  have to remind him to wash behind his ears, only it is in such a way that I have to make “picture recipes” of each step he must follow in order to take a shower, from closing the shower door, to using soap, to washing his hair with shampoo, not conditioner, to wetting his hair and body before he uses the soap and shampoo.  I tape this list, which is covered in clear plastic, to the outside of the shower, so he can follow it. If I don’t switch the list regularly, or check on him, he still neglects several of the steps, most of the time. Taking a shower is actually pretty complicated, if you think about it. There is an order you must follow  to avoid flooding the bathroom, burning yourself, getting soap in your eyes, and finishing as dirty as you were when you started.  My son has a hard time remembering the proper order to execute a series of steps, even small simple ones that we take for granted, such as bathing.

Instead of protecting his sisters from lecherous guys, and otherwise rotten kids, he is protected by them, often fiercely. I remember calming a trembling eleven-year-old daughter who was begging to go to my son’s school before the bell rang, so she could physically beat up the boy who had, on the previous day,  punched my son in the stomach and called him a “faggot.”

She told me she would take a stint in Juvie any day for it. I believed she would have.

Although a love of team sports does not define all men, I know they make a lot of little boys very happy. I think it addresses something primal in them that relates to war play. I know it doesn’t float everybody’s boat, and I do not think less of a man or boy who does not play them or even enjoy them — they are a way for boys to move their bodies and stay fit. I believe this is important. I also don’t expect that my son will ever play a team sport. His motor skills are terrible, for one thing, and he is largely unsuccessful when he even attempts to catch a ball. He also doesn’t understand nuances of most sports. In order to understand a team sport, a person needs to be able to think of what others intentions are while thinking of his own short term and long term team goals:

If the ball is here, and I get it, I need to do this because if I don’t then he might get it an be in a position to score, because last time, when we were in play here, he stole the ball and drove it straight in for a goal.

That’s a lot to think about. My son, like many other people with autism, has little to no concept of theory of mind.

We have been to the ER a number of times, but it has never been for a broken bone or stitches.  He has had pneumonia too many times to count, he has eaten things that have gotten lodged in his windpipe, he had a vaccine reaction that left him with a 105-degree fever, he drank a cleaning product — when he was almost five. Around that same time, long after little boys should be finished with their  toilet fascination, we found him with his arm stuck all the way up to the bicep in the toilet of a Payless Shoe Store. We were a minute away from calling Fire Rescue when I figured out how to get it out.

And except for video games, he doesn’t really play with toys and never really has.

Still, this is a boy who will one day become a man, and he needs a lot of support to do this. He will do it without football or skateboards, without the ability to infer information, without the camaraderie of a locker room, and probably without a crew of best buds. He will likely be guided and directed by his parents, and hopefully, another adult mentor who sees his past his odd speech patterns, strange obsesssions, and loopy gait to his many strengths.   The opportunities he has for career exploration and mentoring will probably be orchestrated by us.  It is our job to identify his skills and interests and create experiences that will allow him to develop a skill set that will let him become a good worker.  We believe that if you find a job that makes you happy, and you are a good worker, then your chances of success in adulthood are high.  The details of developing  this skill set are as tiny and numerous and detailed as writing a complex computer program and sometimes this daunts me.  But we have no choice.  He can’t help having autism, and if you think it is hard parenting a child with autism, can you imagine navigating your entire life with it? And just like  with any child, he deserves whatever support he needs to be the best he can be.

Miss Suzy is a writer, mother of three and step-mother of two. She blogs about the quirky side of family life, raising a child with special needs, and occassionally, doles out  a pearl of wisdom.

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