A Child’s Wish

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

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29 thoughts on “A Child’s Wish

    • Thanks. I love that Thoreau quote. Overall, it’s a happy story. The good far outweighs the bad.

      On a completely different note, where do you find those bad movies on your site? I mean, Alabama’s Ghost sounds fantastic! Your site is interesting. I love the weird and quirky.

      Thanks again for the comment. You should come back when the subject matter isn’t so serious.

      • Thank you very much for the kind words! I’ve built up a huge collection of bad movies from 20 years of being a bad movie fan. Alabama’s Ghost is every bit as much fun as it sounds. I’ll be reviewing another Hobbs film The Godmonster Of Indian Flats in the near future. “Weird and quirky” is a perfect way to describe me and my blog, I guess.

        I’ll be back here reading your stuff plenty of times! Take care!

  1. I just want to reach through my computer and give you a hug!! I sat here reading this and was wiping tears from my eyes, not just because of what you said, but because I can relate. Noah has ADHD and though I know it’s not the same as Autism, he struggles in ways “normal functioning” kids do not and it has truly been a struggle making our way through the diagnosis and finding the right treatment. He has made similar comments as what Mikey made in his essay. He has commented several times since Kai was born just 8 months ago that he really hopes Kai doesn’t have ADHD. He breaks my heart every time I hear those words come out of his mouth because I don’t want him to feel like there’s something wrong with him or to hate something about himself he cannot fix or help. I’ve been trying especially hard to point out all the positives about ADHD, things that may be seen as a negative if you look at them one way, but can also be a positive. Such as the fact that he can multi-task better than anyone I have ever seen. Granted that multi-taskign is highly frustrating when I’m trying to have a serious discussion with him and he’s got 10 other things he’s also paying attention to, but he absorbs all of it. I’m sitting there ready to pull my hair out because I can’t get him to just pay attention to ME, just me, not his book or the TV or the cat or his toys or the gazillion thoughts he has going on in his head, just me! And then he looks at me wondering why I’m so out of sorts because he can repeat back to me, verbatim, not only everything I said, but can give me play by play details on what the cat was doing, what is going on in his book and a plethora of random facts about the Civil War or some rare spider in Venezuela or hurricanes or whatever particular thing he’s interested in that particular day. I have learned that though these things drive me crazy as a parent, they are things he cannot help and can be a positive, so rather than harp on him, I’m trying to praise the positives and/or find the positives. It’s a constant struggle for me, but we’re getting there. And I’m rambling now, lol! I wasn’t saying all that with the purpose of giving advice or anything, I was initially just trying to show how I relate and what I’ve done to try to lessen some of the sting he feels. It’s hard raising kids in general, then you throw something like Autism or Aspergers or ADHD in the mix and it’s a whole different ball game! I have always noticed that Noah has an extremely compassionate heart and I honestly believe that some of that compassion results from his struggles with ADHD and not being like everyone else. It hurts us as parents when they really start to recognize that things are different for them. It hurts us to see it hurt them, but they are resilient and they will find their own way. Noah really struggles at peer relationships, for a few years this really hurt him, but he has figured out what works for him; he’s figured out ways to have friends and maintain those friendships. Most importnatly, he’s figured out how to do that with the ADHD, not trying to exclude it or be someone he isn’t. He may not have tons and tons of friends, but he has many more than he did last year. Granted most of his friends are younger than him, but that’s what works for him while still allowing him to be himself. It’s painful at times, but they get through it, we just have to be there to hold their hands when they need it.
    Again, I know having a child with ADHD is not the same as having a child with Autism, but I wanted you to know that, at least on some level, I relate and know how you feel.

    • (( )) That’s my hug back to you! Mikey is very resilient. There have been incidents that affect me far longer than they do him. Like you said, there are positives to every situation. Like Noah, Mikey is also very compassionate and I know it’s because of his own struggles. I hope that my other children will be the same way. Good luck to you and Noah!

      BTW, thanks so much for the comment. In the blogging world, it’s all about the comments, it seems!

  2. Mikey is lucky to have a mother that recognised the signs and took action so early. Don’t underestimate your own and your husband’s contribution to Mikey being at the high-functioning end of the spectrum.

    I can appreciate your thoughts on reading the names of the artists at the doctor’s office. I think I’d have had a similar reaction.

    • I adore Beethoven. His piano sonatas and Fifth Symphony are what I’m currently playing. I get that he (and Mozart and Picasso) made major contributions to the Arts, and their genius has everything to do with their “issues.” I understand the posters were trying to be encouraging and showing the positives of autism. Unfortunately, on a personal level, the cost is too high.

      I don’t want a famous musician. I want a happy child.

      • I do like Beethoven too – about the only classical music I do like, actually. I think you express what most mothers want first and foremost, despite the stereotypical “stage mother” image we see in the media. None of us push out that baby hoping for a World No. 1 tennis player or a rock star. We count the fingers and toes and breathe a sigh of relief.

        I am sure that with his parents supporting his development as you do, Mikey will be happy. Maybe not in the same way as he might if he were not autistic, but he will be happy in his way.

        I imagine the teenage years may be the most difficult. We all know the teenage angst of wanting to “fit in” and you already expressed some of that difficulty above. I trust he will learn to be inspired by or celebrate the areas he is good at and to not let the other areas worry him too much.

  3. As a Mom that just had a child diagnosed with aspergers I can feel your emotions and your horror of what that doctor did. I am glad Mikey is adjusting. I am just starting down this road even though for quite a while I have suspected something was just a little bit different. You and I ended up writing about our sons for this piece. Big hugs to you :)

    • Thanks so much. I suspected for a while before making the appointment. The first step is the hardest but after that, things move very quickly. You’ll be amazed how much you learn in a short time. The best of luck to you and your son.

  4. the difference between Beethoven and your boy may just be the mother. Life was a hell of a lot worse back then than it is now people with autism had no one to help.. There is reason for hope. Advances are being made and new ways of learning are helping to get children out of their shells. i have heard that the xbox kinect is an amazing tool for kids with autism.

    Your kid is ahead of a lot in his predicament, he has a great mom who is willing to push out of her comfort zone for the best interests of her child. Bless you.

  5. Yes – I feel like I am quickly inhaling all the information as I am talking to teachers, parents and everyone else and I have to be able to explain what is going on with my son. Just add a little water and a book instant expert over night! The things we do for our children :) They are so worth it!!

  6. Your son’s essay is very moving. Your story of the examination really shocked and appalled me. What a terrible ordeal she put you and your son through! I wonder if that was a typical exam or if her methods were pretty quirky.

  7. Wow – a very human, emotionally moving, and candid expression of a mother’s unexpected journey. A friend and sister-in-law have had similar experiences, pain, frustration, fear – and I have learned as a teacher so much from their experiences. I learn from yours as well – and can tuck these gems away for the Mikeys I will have the privilege of meeting and helping to educate. Beautifully written and riveting.

  8. I am so glad that he is doing well. May he always be surrounded by people who love and support him.

    I work with a group of kids in the summer, and most of them fall somewhere on the spectrum. They are such incredible kids, and they teach me as much as I could ever hope to teach them.

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