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A “Special Needs-Friendly” Label Doesn’t Mean It Actually Is

Jamie Sumner
Special needs mom, author and blogger
07/29/20  2:23 PM PST
Special Needs

I waited too long to take my son, Charlie, to the dentist.

His early life was so medically complicated that I couldn’t imagine adding another thing to the already long list. He was prone to febrile seizures and required a tracheotomy to breathe and g-tube to eat. In those first few years of life, he also endured an excruciating, but necessary tongue-reduction surgery and countless other procedures to help him live more freely. He was no stranger to specialists and pain.

As he grew older, however, his medical needs lessened. No more seizures. No more trach. No more g-tube. By the time he turned four, the pediatrician became dogged in her pursuit of getting us to a dentist. But Charlie has several sensory processing issues. He can’t stand the buzzing and humming sounds of hair dryers, electric razors, vacuums and the like. The shrill whine of the dentist’s drill, I knew would be at the top of that list. He would need a calm environment where he could have a room to himself with people who understood him and his condition.

When a local dentist visited Charlie’s special needs preschool and handed out magnets that espoused their “special needs-friendly” environment, I took it as a sign.

They had separate rooms for kids who needed quiet. They had a big bubbly fish tank in the waiting room and books and puzzle tables and extra quiet equipment for the auditorily sensitive kids. They even had television screens on the ceilings.

The first few cleanings went off without a hitch – or at least a big hitch. The dental hygienists were wonderful and efficient, even if the dentist himself asked me each time what Charlie’s “condition was” and “if he has to stay in that wheelchair or can he walk?” It bugged me that he didn’t try to connect with Charlie, but like any practice, the nurses did the majority of the work. We only saw the dentist for the final parting wave.

On a sunny, cold morning in December, however, I wheeled Charlie into the office for his first big procedure—a tooth extraction. After an impromptu round of x-rays, which revealed not one, but six baby teeth that needed to be removed for his permanent teeth to grow in correctly, the dentist said, “Here’s what we’re going to do—we’re going to pull them all today. It’ll be quick.”

It wasn’t a question. As I followed the dentist and three hygienists down the hall, I asked him about the sedation, the reason I had been told not to give Charlie anything to eat or drink. Without turning, he said, “He’s not a candidate for sedation.” He didn’t explain and I was still processing the idea of removing six teeth to question it. I assumed he knew best. That’s why we saw this dentist, his expertise with kids like Charlie.

However, when he took my son from my arms without asking and laid him flat on the exam chair, it became clear that he did not know Charlie at all.

Charlie does not like to be laid flat – a residual startle reflex from infancy. He screamed and I rushed to place my hands on him. I should have left then. But I didn’t. It was a train that was already in motion and I couldn’t see my way off.

The dentist held up a cotton swab with numbing gel in one hand and a syringe in the other. Charlie screamed and the hygienists rushed to hold his head. Through a mess of Charlie’s blood and tears, the dentist administered the shots and then yelled, “get me the pediatric board!” There was no time for me to process this order or calm Charlie down before the hygienists carried in a blue stretcher and strapped Charlie down onto it. I felt the breath woosh out of me at the sight of my son’s trapped body.

I reached for him, but the dentist stepped in my way.

“This’ll be quick,” he said and yanked those six wayward teeth. I strangled a scream as Charlie wailed and snot bubbled from his nose. I rubbed his feet, the only part of him I could get to and silently cried. It’s my own silence that I regret the most. Why didn’t I say anything? Why couldn’t I find my voice and get us out of there? I let the confusion and false promises that they knew what they were doing paralyze me.

True to his word, the dentist was quick. But quick and brutal is still brutal. When it was over, I ripped the Velcro off Charlie and lifted him onto my lap. He buried his head in my neck and I felt the blood and saliva dampening my shirt. Behind us, the dentist was already leaving the room. It was only then that one of the hygienists asked, “Mom, you okay?”

I shook my head. “No. No, I’m not,” I said into Charlie’s hair. “The last time he was on one of those boards was in an ambulance on the way to the ER.” It was the last seizure he’d had at age two before he outgrew them. It was also the worst. I had never wanted to see one of those boards again.

“Oh wow, this must have been traumatic then,” she replied. I turned my back to her to put Charlie in his wheelchair. Her hindsight was no good to us. I pocketed the blood-smeared envelope filled with his six teeth and we left. They told me they would call to follow up that afternoon. They did not.

I found my voice the next day when I called to make a formal complaint and remove Charlie from their patient list.

It was too late to undo what had already been done, but they would hear what I had to say, even if they did not heed it: you cannot set up a fish tank and television screen and claim to cater to children who are differently abled. You have to see the child and take time to understand them. If you cannot do that, you are not fit to care for any child, much less one with special needs.


special needs parents

Jamie Sumner is a special needs mom, author and blogger.

Discover her new book, Unbound: Finding Freedom from Unrealistic Expectations of Motherhood.

Read her blog, The Mom Gene.

Follow her on Facebook.

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