Friday, November 18, 2011

Early Ignorance

Karen Velez
solodialogue.wordpress.com

My son was diagnosed with autism in April of 2010.  He was almost four years old when we received this news.  It was not the shocking blow that I’ve heard other parents describe.  For me, that blow came at Christmas 2009.

To me, my son was always a “sensitive” child.  I never baby sat and, literally, had no experience with children.  I knew no one with autism.  I knew no one with children with autism.  I was, truly, the epitome of autism ignorance.

For the first three (nearly four) years of my son’s life, I had rearranged my own. Previously a trial lawyer working 45-60 hours a week, I cut back my hours to 9-12 hours a week. I thought this was “normal” for new mothers.

My son was obsessed with space. I bought every book on the planets. I ritualistically pointed to Mercury, Venus, Earth…. at my son’s urging so he could recite them. I cringed when newer books left out Pluto because it was part of our “routine.” That was how we “played.”

Around my son, I learned not to say certain words or sounds to avoid a very nasty reaction. This was okay with me: I reasoned that at least he was communicating his dislikes. Some of the things my son rejected: hearing me make the sounds of animals, horns, or sirens; counting numbers also set him off.  Pretend play was non-existent. My son had other quirks: he required me to keep both lights in our bedroom, either “on” together or “off” together. We took  escalators up and down and up and down. We rode elevators four to six times in a row, while I apologized to those who got in my son’s way when he insisted on pushing the buttons. All the while, I never thought these behaviors were indicative of something. Something big, something important.

My son spoke, but not in sentences. He repeated lines from TV. I counted how many words were in his vocabulary, as requested by my pediatrician. It was within the low end range. I introduced new words. I fudged the numbers to fall within “normal.” I was fooling myself. Clueless.

About two weeks before Christmas 2009, my son had an ear infection. We went to the doctor. Oftentimes, our regular pediatrician would not be available. We saw many different doctors. It was never pleasant. There were always tears and loud crying. But this was not Disneyland. This was the doctor’s office. That was normal?

On this occasion, my son was particularly fussy. As usual, I intervened. “Oh, Dr. B, please don’t use the word ‘moo,’ or he will get upset,” I said, while she tried to scope his ear.  Too late. He was upset. He started to spell.

One of the paths to a “meltdown” for us was always to spell. “T-R-U-C-K!!” His inflection and volume would rise. He was spelling by the time he was two. Now, here in Dr. B’s office,  spelling escalated to crying, screaming, and a full-fledged meltdown.

That’s when Dr. B sat me down and suggested an evaluation. She did it as gently and kindly as she could. She told me that UC Davis Mind Institute, nearby, was one of the best facilities in the country. She would make a recommendation. She kept using the words “quirky behavior.” She tried to soothe me. She told me that his autism was “mild” and “borderline.” She told me about other children with autism and how they were in “regular schools.”

But by this time, my head was reeling.  I was panicked.  I only half heard her words. Something was “wrong” with my precious, beautiful baby boy?  My joy, my life. How dare she suggest my son might not attend “regular” school?!  And, profoundly, to the forefront, the question, what is autism?

At the time, I had heard that children could “get autism” from vaccinations.  I heard that Jenny McCarthy had “cured” her son of autism by some diet.  I knew nothing.   I had absorbed only bits of myths.  I was mad!  At Dr. B, at my husband for not being there when I was given this news, mad at the world.  The reality was I was mad at my ignorance.

After Christmas, I filled out paperwork for an evaluation with UC Davis. I mailed it in. Every day, I was researching, looking for treatments and answers. I found private speech therapy for autistic children nearby. I obtained referrals. First, a hearing evaluation. Then speech therapy.

Looking back now, if I’d only understood what autism was from the very beginning, maybe I could have started intervention earlier. I wish I had not been so profoundly ignorant. I wish I had known more. I still have so much to learn, to accept, and to understand.

Now, my son has therapy five days a week. He has made significant progress. Meltdowns are few and far between and almost (knock on wood) a distant memory. He is phenomenally smart but we have our daily struggles. I am grateful that I was blessed with all the right pieces falling into place.

A lot of parents who blog and tweet make a point of telling the world that autism does not have their child -- their child has autism. It’s almost as if, in using the word autism, in defining our children, we envelope them with a blanket of fog to others. Instead of recognizing our children as individuals, our kids are cast into a stereotypical bin and avoided by those too ignorant to understand.

The word “autism,” in my limited experience, remains a mystery to the general public.  Unless your life has been affected, you simply don’t know. There is nothing to motivate a person to know.

That’s where each of us who do know come in. Each of our voices is a weapon against ignorance. As parents, with each blog, each story, we announce to the world that our children are diverse, varied, multifaceted, individuals with interests, talents, and personalities just like any person.

I want everyone to know, to understand, to recognize.  Because, ironically, it is the power of communication -- the very power that so many naive about autism assume autistics don’t have -- that can, and will, save autistics in the end. Save them from prejudice, bullying, discrimination and isolation. Knowledge is power and communication is the key.

A version of this essay was previously published at www.solodialogue.wordpress.com/