Special Needs
Profile - Skyler's Eyes:
One Local Mom's Personal Story of Her Son's Autism
Boy or girl, I knew I wanted to name my firstborn child Skyler. Nickname, Sky. I had no idea how fitting this name would be until my baby boy's eyes turned a shade of blue so light I have only found its equal in the midsummer sky. I could lose myself in those eyes, if he would only give me the chance. His gaze does not rest on mine long enough to do so, although his eye contact has improved tremendously over the past year of his treatment. Skyler, my intelligent, affectionate, and imaginative four-year-old son, has autism.
Skyler & Vicki
I have come to know that Skyler's eyes see the world differently from yours or mine. At our dinner table, in a state of food euphoria, he will stare off into space, smiling radiantly at some feast for the eyes that is obviously hidden from my view. He visits this alternate reality often, a realm
I imagine is filled with his favorite cartoon characters. There he can solve mysteries with Scooby, explore with Dora and, of course, drop in on Mickey whenever he wants. I ache to go there with him, to experience the wonders that lure him away from me so frequently. But guests are not allowed. The price of admission is autism. It is too high a price to pay.
As happy as he seems in his own little world, I am committed to pulling Skyler back into mine. I have seen the dramatic effects of his intensive therapies – the way they have made the real world easier for him to bear. I will take full advantage of these special services in order to make his actual life as fulfilling as his imaginary one.
Skyler is doing extremely well. We are among the lucky ones. The key was in discovering his autism early and getting treatment during the most critical time in his brain's development. Looking back, I'm glad I trusted my instincts over the well-meaning reassurances of family and friends. "He'll talk when he's ready," was a comment I heard almost every time I confided my worries. They thought I was overreacting, as first-time mothers are apt to do. I hoped they were right. Still, I voiced my concerns to our pediatrician. She did not take them so lightly. Per her suggestion, I called Early Intervention for a free evaluation.
Skyler was just a year and nine months old when the first of many therapists entered our home. I finally allowed myself to ask the dreaded question, "Could it be autism?"
"He's so social," one of the therapists said as Skyler charmed her with his striking blue eyes and infectious smile. "I wouldn't be worried about that." In fact, she and her colleague deemed him within "typical parameters" that day, despite his almost complete lack of speech.
Instead of happily accepting their positive review, I asked them to reconsider. I was nearly due with my second child, after all, and Skyler's silence was starting to frustrate him as much as it did me. I imagined his tantrums mingling with the ever-present cries of a newborn, and my survival instinct emboldened my request. The two women empathized, rechecked Skyler's scores and approved him for one hour of speech therapy per week. I was relieved and grateful.
During the next few months, I watched the magic show of Skyler's speech therapy and marveled at his therapist's seemingly bottomless bag of tricks. Wielding her craft like a wand, she summoned forth my son's voice from where it had been locked deep within his core. She did this in the simplest of ways – through play. I studied her techniques and became my son's private tutor, drilling him for hours each day. His progress was staggering. My worries began to slip away – briefly.
Then we introduced Skyler to a daycare setting, two days per week. Every time I picked him up, his teacher's words added unwelcome ballast to my spirits, dragging them down from their rightful place in the sky. My son was not interacting with the other children in his classroom, and he wasn't using the language he had worked so hard to acquire. When his speech therapist visited him there, she agreed something was wrong. Skyler was a completely different child in that setting than the boy she had come to know and love at our home. I trusted her judgment, so we scheduled another evaluation – this time at Kirch Developmental Services Center at Strong Memorial Hospital.
Skyler was two years and nine months old at the time of his appointment, and he was in top form that day. He talked and talked. In fact, he wouldn't shut up! He used his language exactly as he did at home – to provide a running commentary on what he was doing and seeing. But when it came to asking and answering questions, he was at a loss. Still, I was never more proud of my happy, inquisitive boy.
When I heard the diagnosis, I accepted it without tears. Skyler had Pervasive Developmental Disorder: Not Otherwise Specified (PDD-NOS), one of the five conditions referred to as Autism Spectrum Disorders. I knew this diagnosis did not change who my son was or how much joy he would continue to bring to my life. Having mentally prepared for this eventuality, I considered myself lucky that Skyler's autism seemed so mild. Confirming this opinion, the doctor used the term "high-functioning" and said we should pursue typical classroom settings for him in the future.
"How often do children with this diagnosis fall off the spectrum?" I asked.
"I don't know of any studies that have published that statistic," the doctor said. "But perhaps as many as twenty percent."
That was all I needed to hear – my goal was set. If there were anything I could do to secure Skyler a spot amid that twenty percent of children who were no longer considered autistic, I would do it.
Monroe County has made it easy for my husband and I to pursue that objective, providing an unbelievable amount of support. You may need to pinch yourself after you hear just how much – I know I did: Skyler's diagnosis entitled him to an intensive level of special services, completely free of charge.
From that day forward, he has received fifteen hours per week of special education, speech therapy and occupational therapy - a treatment plan that could cost as much as $6,000 per month if not for the good fortune of where we live. I know luck has nothing to do with it, and I no longer complain about paying New York State taxes. That money is being put to good use improving the lives of children like Skyler.
My gratitude has led me to share our story. I especially want to reach other local families who suspect a developmental delay in their child. Trust me, you have everything to gain by seeking help. Ask the hard questions of your pediatrician. Call Early Intervention for a free evaluation. Put aside any stigma you may associate with special services. Early diagnosis is the key to securing a brighter future for your child. That is all that matters.
Skyler is blissfully unaware of his difference. He adores his special teachers who make learning fun for him. Through their outstanding efforts, his speech and cognitive abilities are exactly where they should be for his age. He still struggles socially and has some sensory issues, but most people who meet Skyler for the first time have no idea anything is amiss.
My son brings great joy to the world around him and derives immense pleasure from it. But he still visits his fantasyland, from time to time. While he is there, I watch his whole body quiver with excitement. His smile beams. His blue eyes dance. Oh, how I wish I could see through Skyler's eyes.
Vicki Schultz lives with her husband and two sons in West Henrietta, and is a member of the Rochester Walk Now for Autism planning committee. This article originally appeared n the September 2008 issue of Genesee Valley Parent Magazine. Copyright 2008.
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