I had the pleasure of experiencing an extremely pride filled day this week. In the morning, my youngest was selected to perform for the school’s annual talent show, and later that night, awarded as the overall outstanding student in her seventh grade gifted program. Her father and I were beaming.
I’ve written before about the simultaneous highs and lows parents like us experience on days like that. In the same instance that your heart soars at the accomplishment of one child, it almost instantaneously breaks at the absence of it for another who will never experience it. Her older sister is that sibling.
Other families like ours are going through the same thing right now. The end of the school year is particularly tough for many reasons. Award Nights. School Dances. Graduations. Concerts. Recitals. Art Shows.
Our friends and neighbors paste their social media walls with beautiful photos of their healthy children experiencing these milestones. While always happy for them, it can sting, repetitive photographic evidence of what your child has lost and continues to miss out on.
Would that have been her friend? What dress would she have chosen to wear tonight? What would she look like now if she didn’t lose her muscle tone and coloring? What award would she have received?
The unfairness can sometimes feel overwhelming, and even though you can always turn off your phone or computer to look away for protection, when the stark differences live in your home among siblings, you can never truly protect yourself anyway. I know families with twins for example, one on the spectrum and one not, who live this difference even more profoundly than we do.
While I have come to a place of great acceptance that the milestones she reaches while different are just as admirable, important, and amazing, I came to the stark realization yesterday that the rest of the world hasn’t come to the same conclusions yet.
It hit me like a ton of bricks while waiting to enter the gymnasium for the talent show. Students from two separate hallways were merging into one forcing a group of students to stand and wait while the other group passed. I had to wait as well.
The group waiting with me was from the special education department. I recognized the teachers and aides and waved. They were always wonderful to our family and I was happy to see them.
As I stood there, I scanned their group for the boy to girl ratio, like I often do. True to reported statistics, the boys far outnumbered the girls not only in amount but also in severity. At least three of the boys were profoundly affected by autism. They were staring at their fingers, moaning or yelping out, and rocking back and forth while they waited.
As we made our way into the gym, I immediately became concerned. The entire school had almost entered already and it was loud. Junior high students were competing to be heard while extremely loud dance music pumped through a professional speaker system. The fluorescent lights above us were on at an annoyingly bright level, shining off of the highly varnished wood floor.
Students and teachers were everywhere, janitors and staff rushing around to set up more metal folding chairs, creaking and screeching as they popped open, scratching the floor loudly as they got shoved into place.
I looked to the teachers and aides I knew well, hoping to get their attention. They were across the gymnasium now, too far to notice me staring them down.
“Get them outta here!” My eyes beamed in their direction.
“It’s too freakin’ loud in here! It’s too much! Bring them in when it’s settled down! What the hell is wrong with you guys?”
One of the boys increased his rocking and yelping. Another was covering his ears. One just bent over in his chair.
“Damn it!” I thought feeling helpless.
My attention went to the band directors who were in charge of the music. How could they not know this was way too loud? How could they not realize some of these kids have sensory processing problems? It’s 2017 for crying out loud!
And then I realized, duh. They don’t have those kids in band.
The show got underway, and to my knowledge, no one had a melt down or needed to leave for any reason. Perhaps I was overreacting, I wondered. My mamma bear instincts calmed down for a moment.
And then something else occurred to me. Not a single special needs student was in the talent show. Not a single one.
At home I forgot about my concerns, gleefully uploading a video of my daughter performing Chopin’s “The Minute Waltz” from memory. We’ve been told it’s one of the hardest pieces to learn on piano. She has practiced for months and did it flawlessly. For a few hours, I got to enjoy the feedback from friends and family who watched it.
Only a few hours later we head back to the school. She had been selected to receive an award, they notified us last week. We didn’t know which one, but we knew which one she had her heart set on, and we were hopeful she would win it.
She did. Overall outstanding student.
More video. More happy tears. More smiles. Congratulations from all of the parents we’ve come to know who were sitting around us. For over an hour, all of us got to enjoy the moment of watching our children be recognized for their hard work, success, and perseverance.
And then it hit me again. Not a single special needs child was at the awards night. Not a single one.
While my daughter receiving the award definitely worked hard to receive it, I can honestly say I don’t know a child who has worked harder at everything in life than her older sister.
I don’t personally know a child who has been through more crap in her first sixteen years on this planet than her. Toxic encephalopathy. Loss of the ability to speak. Loss of muscle tone and strength. Loss of gross and fine motor skills. Years of therapies and treatments. Ear and spinal surgeries. I could go on.
In fact, just as this award show was taking place, she was home doing private tutoring. In addition to school and the homework she gets from there, she does four to five hours of additional work every week. She knows that if she wants to get into a college experience program post high school for students with a disability, she has to show mastery of her baseline skills.
She requested the private tutoring for extra help when she realized she needed more practice. She chose to stay home so she could do that and prepare for a final exam today.
And yet, she doesn’t have a single award from elementary, middle, or junior high school to recognize her extraordinary hard work. Not a single one.
There was no award for overcoming obstacles the likes of which most of us will thankfully never face. There was no award for learning how to write with the wrong hand because one side of her body is now weaker than the other.
There was no award for being a happy, loving, caring child in spite of being bullied, left out, and completely aware of the fact she is different.
There was simply no award.
Because no one is thinking of our children as being the most incredible, dedicated, hard working, inspiring individuals on the planet. But we should be.
And all of them deserve to be recognized for it. All of the parents, like us, who never got an invitation to the awards night, should have had the red carpet rolled out.
If the Language Arts, Math, and Science Departments are giving away awards for excellence in their programs, then our kids should be included in those awards too. If the gifted program gets to award an overall outstanding student, so should the special education department.
Awareness of the special needs students among us has increased profoundly in the last decade, and that’s a wonderful thing. But in my experience, recognition of the amazing accomplishments these kids have achieved still lags far behind.
It’s time for that to change.
Julie Obradovic is a Contributing Editor to Age of Autism and the author of the book “An Unfortunate Coincidence: A mother’s life inside the autism controversy” by Skyhorse Publishing.