You can learn a lot from a child’s essay…

I have a dream that everyone will be happy in this world.  Nobody would have disabilities.  Nobody would have hunger problems.  So nobody would have any problem on the planet.  My true wish would be that this planet would be happy.

This is an essay written by my son, Mikey.  It’s a lovely sentiment and I’m proud that my son is able to think enough about others to envision such a world.  A funny thing about this essay, though.  That second sentence is not one I would expect to find in an essay by a 10-year-old boy.  Hunger, yes, but disabilities?  Well, my 10-year-old is special.  He knows all about disabilities.  Mikey has autism.

Mikey was diagnosed with autism when he was three years old.  I had seen the signs–loss of acquired language, a refusal to walk barefoot on carpet, clinging to DVD cases as if his life depended on them, repetitive hand movements.  Oddly enough, the suggestion of autism didn’t come from my pediatrician, it came from a women’s magazine in an article sandwiched between health and beauty tips and 30 recipes for 30-minute dinners.  I remember reading it aloud to my mother-in-law in her car as we were driving down Highway 17 while Mikey stared out the window, laughing at nothing.  I could tell she wasn’t surprised.  She had suspected something was wrong for a while.  Moms are different.  I didn’t want to see it, even though it was painfully obvious.  If I ignored it, it might go away.  That article prompted me to make an appointment with a pediatric neurologist.

The visit was a nightmare.  I was sitting in a waiting room reading the posters on the wall boasting the creative geniuses that were most likely autistic–Vincent Van Gogh, Ludwig van Beethoven, Wolfgang Amadeus Mozart.  Was this list supposed to make me feel better?  A penniless, insane painter who cut off part of his own ear and died by suicide at age 37?  Two brilliant composers known for their violent mood swings or inability to function like normal people?  Beethoven was an angry, intolerant man who suffered from depression his entire life.  And Mozart was a sickly, dissolute genius who died at the age of 35.  I was not encouraged.

It got worse when the doctor came in.  The first thing she did was get right in Mikey’s face and try to make him look her in the eye.  Then she handed him this spiky toy that vibrated like crazy and when he immediately dropped it, thrust it into his hands again.  Mikey was in agony.  I told myself that she was trying to get honest reactions out of him.  When she held him tight against her and started rocking him violently back and forth, I felt the hair on the back of my neck rise.  The final straw came when she grabbed him by the ankles and hung him upside down.  He freaked and I jumped up and grabbed him and started rubbing his back with as much pressure as I could muster, as it was one of the few kinds of physical touches he could endure.  At the time, I didn’t know that this was yet another sign of his autism.  It wouldn’t be the long before I realized the “quirks” I noticed in his interactions with people all pointed to the same baffling disorder.

The doctor didn’t say anything for at least 5 minutes.  She sat scribbling away on Mikey’s chart while I tried to calm him down.  When she finally finished writing, she had the nerve to get in Mikey’s face and say, in a stern voice, “We don’t scream like that.  You have to calm down or I’m going to make you sit at the table I have in the corner over there.”  I was livid.  I didn’t care that it worked and Mikey got very quiet and very still.  All I could think of was his terrified little face while he was hanging upside down.  How dare she reprimand my son when it was her fault he was upset in the first place!  My anger didn’t last long once she started to speak.  I was too shocked.

She apologized for putting Mikey through the “examination.”  Examination, I thought.  Yeah, right.  Then she explained that normal functioning children enjoy hanging upside down and have no problem holding on to vibrating spiky balls.  It was a baby’s toy, after all, and Mikey is hardly a baby.  I conceded the point, albeit grudgingly.  The she started throwing words around like autism spectrum disorder, sensory processing disorder, echolalia, hyper/hypo-responsiveness, stimming, and idiosyncratic language. Now I was just scared.  By this time, Mikey had made his way to the little table in the corner to look at the DVD case (yet again) that he had brought with him.  I looked at him and he held it up for me to see.  I smiled.  He didn’t.

When I looked back at the doctor she was headlong into a list of tests that would have to be run on my baby.  EEG, EKG, MRI, CAT scan, Genetic testing (i.e. blood work) and a hearing test (finally one that didn’t involve hooking my baby up to wires and electrodes or poking him with a needle).  The hearing test is mandatory as a lot of symptoms of autism coincide with deafness, but we both knew Mikey could hear just fine.  I would also have to fill out a bunch of questionnaires and see speech and occupational therapists.   Because of his age, he would be getting these services in the public school system, which had a special autism class.  He was barely three, for God’s sake, and he would be going to school.   I was also told to put him on a regimen of high dosage vitamins, including fish oil.  The child already had a particular gift for vomiting if anything remotely displeasing to him got near his lips (another symptom).  The next thing I know, I have a stack of copied handouts, a list of phone numbers, a laundry list of prescriptions, and a piece of paper that said “Autism spectrum disorder” in exactly that color ink, and I’m leading Mikey out the door.

I strapped him in his car seat and handed him his DVD.  He looked out the window and smiled.  Not at me.  At nothing.  I broke down in tears.

That was almost 8 years ago.  I don’t think about that day very often because Mikey has done well.  He’s on the high-functioning end of the autism spectrum and early intervention (speech, sensory, and occupational therapy) worked wonders.  Fortunately, in the early years, all the pain and worry about the disorder rests in the hands of the parents.  Small children are more accepting of others and less aware of their own “quirks.”  Unfortunately, it can’t last.

Now, as Mikey gets older he’s beginning to understand that he’s not like everyone else.  There have been heart-breaking conversations about girls and marriage.  Exclusion from an advanced learning class, not because he wasn’t smart enough, but because he couldn’t pass the “creativity” section.  Apologies for ”melting down” when he was eliminated from a spelling bee.  The pain of autism is no longer mine alone.

And now the essay.  Maybe I’m reading too much into it.  He’s smart and very observant.  Maybe he’s talking about a severely handicapped child he knows in school.  I want that to be true, but all I can think about is Nobody will have disabilities….this planet would be happy.

A child’s wish. MY child’s wish.

“If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music he hears, however measured or far away.”   ~Henry David Thoreau 1817-1862