The following is an essay I submitted to “Real Simple” magazine. They have a contest called “I never thought I’d…” I’m posting this on our blog to detail a journey that many may not know our family has gone through. Here’s that essay…
“I never thought I’d be the parent of a special needs child”
I was never one of those girls; the kind that dreamed of someday becoming a mommy. When I was a child I did not carry around baby dolls, dress them up, and nurture them. Don’t get me wrong. I role played. But I was more likely to pretend I was a superstar basketball player with crowds of people cheering me on. It never had anything to do with nurturing or caring for anyone.
In adulthood I continued to dream of fame and notoriety. I left behind the security of a college education, fully funded by my parents, for the complete unpredictability of pursuing a music career in New York City. I was out of my comfort zone but still, the challenge of it all inspired me.
After a 12 year successful run in the music industry as a recording engineer, my focus shifted. What was I doing with my life? What was the point of everything? Why was I here? I knew that the world did not revolve around me, as I had thought in my youth. I also knew that working 80 to 100 hours a week would probably not bring me happiness. But what would? A family? Yes, I wanted a family. In particular, I wanted someone to share life’s adventures, successes, and failures with. I knew I would never look back on my death bed and think “Boy, I sure wish I had worked more hours.” I knew that life was about the people you loved while you lived it. And up until then, I had been fairly successful at living it alone and only loving myself.
I embarked upon a search for companionship and found it in the most unexpected place, an online dating service. Finally, I had met the man that I knew I wanted to start this new life with. We married within a year of meeting and started talking about children. Children were such a mystery to me. I started to internally doubt my ability to raise a child. Nurturing was not something that came naturally to me. Heck, I couldn’t even keep a plant alive. But none-the-less I still had this new desire to start a family.
Three years into our marriage we found out we were pregnant. We were overwhelmed with joy, and a bit scared.
The birth of our son, Orion, was a long, laborious process. There were complications that lead to induction and a c-section. But after 34 hours I finally held my beautiful son in my arms and our new dream started. What could be more perfect than this?
But when Orion was just an infant I started to perceive differences about him. I joined a local mom’s group and observed how other mom’s kids behaved. Their children reached milestones that Orion did not. Their children could be consoled in situations where Orion simply could not. I remember clearly the transition from nursing to solid foods being a particularly blaring difference. Orion refused all solids. He only wanted to nurse. I tried everything but he would go into a complete fit when a spoonful of food came toward him. I wondered if it wasn’t the food but rather the food delivery method. He loved to nurse. It was the only thing that consoled him. So when my girlfriend jokingly suggested I put yogurt on my nipples in attempts to get him to try new foods, I was desperate and willing. That plan backfired. He flew into a complete rage and started screeching at the top of his lungs. I put him in his crib to calm him down and he proceeded to work his way over to the crib rails and start banging his head forcefully. Why would he hurt himself that way? What was going on? I may not have had nurturing instincts, but my “something was wrong” instinct was in tact.
I pleaded with the pediatrician to help me understand my overly sensitive child. She insisted that on the weight scale he was fine and that he’d likely grow out of it. She also suggested that his delay in development was probably just because he was a boy. I knew better.
It wasn’t until we moved and found a new pediatrician that the mystery started to unfold. At our first Doctor’s visit I was voicing concerns about how my child would only nurse and had major aversions to food or anything coming toward his face. It was at this point that the Doctor attempted to look inside my child’s mouth with a tongue depressor. Orion flew into a massive fit. The Doctor looked stunned and I could see on his face that this was far from a typical child’s reaction. He started to probe further. Did Orion respond to his name? No. Did he point when he wanted something? No. Did he sit up, rollover, crawl late? Yep. Did he use any language? No. Finally, the Doctor suggested that I take Orion to an Occupational Therapist for an evaluation. “Occupational Therapist?” I said confused, “But he doesn’t have a job yet.” “Oh yes he does” he said. “He has the job of being a kid”. I came to learn that he meant that Orion had the job of developing his skills, both physically and socially, so that he could play with peers. He needed to acquire the basic skills to navigate life.
After a long evaluation with the Occupational Therapist, we finally got the first diagnosis of Sensory Processing Disorder; a disorder where the brain doesn’t properly interpret sensory input and usually results in erratic or inappropriate responses and behavior. To Orion, everything was magnified. Smells were offensive. Sounds were louder. Lights were unbearably bright. It was all too much for him.
Here I was, out of my element, mothering. But now it was a whole new can of worms. I never thought I would be parenting a special needs child. That happened to other people, but not me. In my mind, those parents of special needs children must have been specifically hand-picked by God because of their enduring patience and amazing nurturing instincts. I had no such skills. Still, here I was.
We contacted a local organization that helped us develop an intensive therapy schedule for Orion. We did Occupational Therapy twice a week and Speech, Behavioral, and Cognitive therapy once a week. We also started him on a home therapy called Wilbarger’s Brushing Protocol where we stripped him down and brushed his skin every 2 hours to help him accept physical touch. This was just the short list. It was an intensive and exhausting schedule for all of us. And still, he continued to have extreme reactions to things. I wore the proof of this on my arms and legs that I covered up to hide the bruises he gave me in his fits of anxiety.
By age 3, Orion was evaluated by a Neurologist and found to have PDD-NOS (Pervasive Developmental Delay – Not Otherwise Specified). He was considered to be on the autism spectrum. Our child had autism – gasp! We could no longer imagine what his future held.
We continued therapies and little by little saw progress. We switched diets, joined support groups, joined playgroups, and pushed Orion continually past his breaking point. He grew stronger and more tolerant with each push. We learned not to put limits on him because he would constantly amaze us and do what we thought was impossible for him. We pushed harder, he tried harder. There were times we all cried in frustration, but we got back up and tried again. And as much as his diagnosis seemed to be only my struggle, I knew it was mostly his. He had amazing strength and encouraged me to go on when I should have been encouraging him.
Flash forward four years to where we are today. Orion will be turning seven next month and starting 1st grade in a typical classroom. He communicates quite well, has friends, has a huge imagination and a great sense of humor, is particularly gifted in art and yes, still has sensory meltdowns. But the difference is that now, I allow myself to dream of his future. It’s been a long road and definitely one I never planned to go down. But I now know that God did hand-pick me to raise this child. Not for Orion’s sake, but for my own. I have learned more about loving another person than I ever could have with a typical child. With a typical child, I am convinced that I would have continued down the road of self-focus. But our autism journey forced me to come out of that shell and learn to desire to understand another person’s perspective and needs. And that is what I’m convinced God wants to grow me in. Sometimes the road we never planned on is the road we really need to go down to become a better person.
