Real Moms Share: Overcoming Obstacles and Meeting Milestones
Overcoming Obstacles and Meeting Milestones
Molly Dellinger-Wray is a mother to her son, Patrick, who has autism. Molly shares her story of overcoming obstacles and meeting milestones on the way to Patrick’s graduation. She partnered with one of our contributors, Meme Hieneman, and together they have submitted a wonderful, informative perspective for you to read. Learn what she has to say…
The end of a long journey
Like thousands of other mothers, I planned to watch my son earn a college diploma this month. I was eager to sit in the audience like a member of every other family, eager to capture a photo of him in a cap and gown. For me, it would mark the end of a very long journey. I can’t begin to put a label to the jumbled feelings of pride, gratefulness, exhaustion, and other emotions this day conjures up for me. Thankfully, the graduate, like a victim of the tsetse fly, has little or no memory of the critical first years of his life.
Before starting my own family, I was a trained special educator with a focus on instruction of kids with severe disabilities and autism. After a few years of teaching, I used my professional skills to help families of children with difficult behaviors at home. I stopped working after having my first baby girl and, less than two years later, welcomed Patrick into our lives. Having had a talkative little girl, my concerns that Patrick wasn’t meeting some of the developmental milestones were dismissed by professionals and friends. They reminded me that it was my professional background raising antennae for a child who would be perfectly fine.
I no longer had the strength to battle it
By his first birthday, Patrick had endured more than ten ear infections, and by age three, he still wasn’t talking. The tactile sensation of clothing on his skin was so aversive to him that he ran around naked most of the time. As a stay-at-home mom with two children under the age of five, I no longer had the strength or energy to battle it. Patrick was quirky. Not aggressive, or naughty. Just different.
His diagnosis was autism. I would be lying if I said it wasn’t somewhat of a relief for me to finally have an answer regarding what was different about Patrick. But I couldn’t come to grips with the fact that my smiling, cuddly son was part of the one in seventy boys his age who were diagnosed with autism. Ironically, the doctor who diagnosed him informed me that Patrick’s behaviors would be problematic in the future, and that I should seek help from the behavioral intervention project from our local university—the same organization that employed me in my younger days. That was one of many emotional stomach punches that were going to come my way; I just didn’t know it yet. As a professional I knew a lot about what was best for my son. But as a stay-athome mom in sweatshirts and sneakers, I constantly second- guessed myself.
Traditional milestones were always worrisome
When I asked for my son to be included with typically developing children at our neighborhood school, and was asked, “Don’t you want what’s best for your son?” I had to stop and check myself. Was my insistence for the least restrictive environment that important? I can proudly say now that Patrick was the first student to receive special education inclusion services in both his preschool and elementary school… but not without a lot of sleepless nights on my part. Traditional milestones, like going to camp, school dances, and transitions were always worrisome. And the overriding questions of “would Patrick be happy and would this be the one thing that made a difference in determining a better future for Patrick?” Have always haunted us.
In hindsight, I wonder how difficult my professional knowledge, combined with my mother bear instincts, made Patrick’s school team feel about working with me. Was I a problem parent? I knew from the research how critical it was to create positive partnerships between families and professionals. I was always walking the tightrope between demanding the most for my son, and striving to maintain that positive relationship. I steeled myself before each educational meeting with the same mantra, “Don’t start to cry” I knew if my voice started to quiver just a little, my credibility as an advocate for Patrick would be dismissed. I rarely succeeded, and in my conversations with other mothers of special education students, no matter how strong they may seem, revealed the exact same sensations. Were these times truly the best circumstances for parents to be making decisions? Now I understand why parents ask for advocates to attend the meetings with them.
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