November 11, 2013

Too Smart to Be Helped.

“What are you going to do—die?—when you have to run the mile?” the gym teacher yelled at my 11-year-old son, as he struggled to keep up with the other kids running laps at his Blue Ribbon School in western New York state.

My son ran with his right shoulder hunched over almost if he was holding a football, running like a quarterback; he clearly stood out among his peers looping around the track.

How could a physical education teacher bully a child when she should have helped him reach his potential? Even more so, why didn’t she question that his lack of ability to perform like his classmates might be part of an Autism Spectrum Disorder (ASD)?

Only a week earlier, my son gasped for air during a late night croup attack. I frantically drove him to the hospital while listening to him throw up and struggle to breathe in the back seat of our car. I watched as the nurses and doctor worked their magic, and his oxygen rates slowly climbed to 99% before we returned home. We went back to our daily routines with the addition of oral steroids for the next week until the exasperated yell from his teacher, “What are you going to do—die?—when you have to run the mile?”

Understanding that fine line between breathing and not breathing, my son freaked out about the gym teacher’s comment because he had struggled with the very thing that keeps us on this side of death.

I called the principal to gain clarity about the alleged comment, as belittling a child is not an effective form of educating. I wondered how she treated him over the years, being that she was his only gym teacher since Kindergarten. Understandably, a croup attack is not an ASD (an acronym that would become a part of our lives about seven months later), but a child with an undiagnosed ASD may take the above comment more literally. A compromise was made to switch my son to the other section of physical education with a different teacher.

Fast forward seven months to December 2011, I received a call from the new gym teacher that my son was kicked in the chest by a classmate who had been incessantly asking my son if he was gay (over and over again).

I stood in silence looking out the front window, wondering “Why my son?”

Why does my son’s awkward gait, social difficulties, little professor attitude and fascination with certain topics (and the lists he makes of NPR schedules and train schedules) make him different?

Why does his awkward gait imply that he is gay (when he still hasn’t kissed a boy or a girl)? Why does normal for boys mean that they must perform like a jock and be heterosexual?

Even more so, the bullies would never be asked by their teacher, “What are you going to do—die—when you have to run the mile?”

You see, at that point, the administrators (in particular the principal, who was also the Chair of Special Education, and the school psychologist) should have recognized the cluster of symptoms (in particular, social awkwardness) that delineated a child on the Autism Spectrum Disorder. They should have asked to evaluate him for a 504 or an IEP at that very moment, but it was a Blue Ribbon school, and all they cared about were test scores, which my son excelled at.

I pause here in my story.

I press the mute button at the week prior to Christmas 2011, and observe my story without the volume. I watch myself, repeatedly asking the school principal and psychologist that we think our son has an ASD, but they tell me it’s a medical diagnosis. In slow motion, I go to the doctor, who tells me it’s the school’s responsibility. I ask the school again, but they tell me the same answer, go to the doctor.

After one of the school visits, I stand exhausted in the hallway, and notice posters that read “catch-a-kid-who-cares.”

I keep asking for help, but my voice is mute.

Ironically, that is what the Office of Civil Rights at the United States Department of Education told me in their letter from August 2012. I filed a complaint to investigate why the school district failed to evaluate my son for an ASD. I wanted answers after taking my son to a private psychologist who diagnosed him with Asperger’s in March 2012.

The OCR found that my complaint was “moot” because I did not ask in writing to have my son evaluated (as was the unpublished District’s policy with regards to evaluating students for IEP or 504s).

Incidentally, the district sent home a packet the following Fall (for the first time ever) about the process of asking for evaluations: it must be in writing.

Yet my complaint was “moot” because I used my voice, but not on paper.

Yes, my voice was “mute.”

Oftentimes, I want to return to that day in December on which I received the call from the P.E. teacher about my son being kicked in the chest.

I want to go back to that moment in which I felt stunned, as if by a sting ray, numb, but tingling. I want to sit down at my desk, take a white sheet of paper and pen my request with black ink that will smudge from my tear drops.

Pen words onto a tangible piece of paper that will be held in their hands, so they can be held accountable.

I want to write in thick black letters, “Please help!” I want them to hear my voice through letters that become lopsided from my quivering hand that asks to have my son evaluated for Asperger’s.

Yet I cannot rewind, but I will write these words, an abbreviated story of how a mother’s voice was “mute” and ignored, and hope that somebody will hear, so they do not make the same mistake.

Since those frigid winter days, I did what any caring mother would do for her child, and removed him from a Blue Ribbon school system that could not “catch-an-administrator-who-cares.”

The choice proved to be worthwhile, yet the struggle in relocating came at a financial and emotional price.

Today, after dropping off my son at his junior high via the public bus, I scooted the extra mile with my younger son to his elementary school. My younger son explained that he hates having to make all these changes because of Asperger’s—I explained the problem is not Asperger’s.

It is that we went for so many years of not knowing that his brother had Asperger’s, and that it takes a toll on a family—but makes them stronger and more flexible, as we scooted to his school where administrators do care.

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Editor: Bryonie Wise

Photo credit: Julie Quesnel (Pixoto)

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