Letting Go of “Normal” – The Journey to Diagnosis is a Winding Road
By Heather Parrott –
Zachary was born by emergency cesarean section on a cold February night. His birth was one I don’t share with first-time moms because it was scary and difficult. For me, the end definitely justified the means. My son (we were told he was going to be a girl!) was born healthy.
I felt something was “off” about Zachary from the beginning. He had difficulty feeding and required occupational therapy in the hospital to help assist with his challenges. When he came home, each evening he spent a couple of hours screaming. It was at the same time every night. Chris, his dad, would take him downstairs, hold him, and just let him cry it out. Nothing would console him; it was as if he had to work it out for himself. Even the swing, which was his favorite place to be for the other 22 hours of the day, did nothing to soothe him. It was frustrating and a little frightening.
As soon as he was old enough to sit up, Zachary added another “quirk” to his repertoire. He would sit on his behind and use his chubby little legs and feet to propel himself in circles. He would do this for several minutes, stop to rest, then spin some more. What made other people say “awwww” and think “how cute” made me say “hmmmm.” He showed no interest in crawling or pulling up onto furniture at 8 months old but he would spin. Since he also had feeding difficulties progressing to thicker foods, my “hmmmm” soon went into full blown “is something wrong with my child” mode.
It wasn’t until he was 3 years old that someone finally saw what I saw and came to me with concerns. Zachary was in a one-day-per-week preschool. The teachers and director were educated in early childhood development and part of the reason for the early class was to catch developmental issues early. The director sat me down one day and told me that Zachary needed to be tested for Sensory Integration Disorder. She said his fine motor and gross motor skills were not age-appropriate; he often had a “deer in the headlights” look when it got loud, and the fact that he was having trouble in other areas of daily life led her to believe he should be tested. She recommended the book, “The Out of Sync Child” by Carol Kranowitz.
I went home and read the book. It was Zachary. To a T.
It was about this time we started noticing other quirks. Zachary loved to hear us count to 10 in different languages and picked up the ones we knew. He would ask us to write the alphabet over and over on the edges of the children’s menu when we went out to eat. He would line up his cars, turn his tricycle over and spin the wheels, name his stuffed animals, and talk constantly about certain topics. He also would NOT make eye contact and we didn’t know why.
I don’t remember how Chris and I found out about Asperger’s, but I do remember both of us definitely saying we knew it described Zachary. When he was initially tested, we were given a diagnosis on the autism spectrum called Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS) and Sensory Integration Disorder. Occupational therapy was recommended.
Shortly after his diagnosis, we moved from Colorado to Texas. Zachary’s first experience with occupational therapy was somewhat helpful but didn’t address many of my concerns, such as eye contact and spinning. A change in pediatricians brought new thoughts and suggestions. One suggestion was not helpful – obtain testing via the early childhood program through the school district, where we were told he would have to fail in a mainstream classroom in order to get services. Another suggestion was downright wrong – “He can’t have Asperger’s,” she said, “Because Asperger’s is autism and he talks.” Apparently, she had not read the Diagnostic Statistical Manual IV (DSM-IV) diagnosing criteria as closely as I had. She was “fired” as our pediatrician shortly after that.
Our new pediatrician was happy to refer Zachary for further testing but it was not covered by insurance. Money was an issue for us at that time. She did refer him for an evaluation for occupational therapy, which was covered. It was a thorough evaluation and therapy was recommended again. Chris and I were hesitant, but Zachary was ready to go. He had already dubbed the place “Jungle Gym” because of the large outdoor play structure in the yard.
Zachary’s therapist at “Jungle Gym” was amazing. From day one, they had a bond. After their first session, she brought out a book to me titled, This is Asperger’s Syndrome by Elisa Gannon and Brenda Smith Myles. Her exact words to me were, “I can’t officially diagnose him, but he shows the same behaviors as my other clients with Asperger’s.” I felt so validated…and so scared.
Zachary thrived at this clinic. It was holistic in its approach, weaving occupational, physical, and speech therapy into sessions. He would work individually on fine and gross motor skills, and special therapies for his oral-sensory issues. He learned how to cross the midline. Birthday parties at Jungle Gym were a chance to work on feeding difficulties. A little girl began to have sessions at the same time so she and Zachary would work on communication skills by playing games together or working on problem-solving together. I could see progress was being made.
It was during this time that Zachary started playing sports. As a mom of boys, I had dreams of being the ultimate soccer mom; games every weekend, traveling to other places, having a “soccer” family. Although he was making great progress in therapy, he was still far behind other boys his age with motor skills and that showed on the soccer field. I remember one game day distinctly…they game day I said to myself, “He will never play soccer past first grade. This is one dream I will have to let go.” I cried.
Although we were unable to pursue private testing, we were able to get an informal Asperger’s diagnosis through a neurologist in Texas. Zachary began having horrible bouts of insomnia and became quite clumsy, to the point I thought he would hurt himself by falling down the stairs. A doctor I was seeing at the time had a colleague friend who was a pediatric neurologist and got us an appointment. For insurance purposes, he could not diagnose Zachary officially, but he did “off the record.” I knew in my heart that Zachary had Asperger’s but it didn’t make it any easier. I cried.
A change in jobs prompted a move to Oregon in 2008. My husband’s insurance changed and we were able to have a full diagnostic evaluation through the support of a team of professionals. We sought therapy from Providence Neurodevelopmental Center for Children (PNCC). Zachary had sessions for occupational therapy, speech therapy, and physical therapy. Each therapist would come together and share Zachary’s progress with the developmental pediatrician. By the time she saw Zachary, she knew all about him and could give us our OFFICIAL revised autism spectrum diagnosis of Asperger’s. This time I didn’t cry.
I didn’t cry because I had finally come to realize that Asperger’s was not a bad thing; not something to be feared. It didn’t mean that Zachary wouldn’t be able to accomplish great things but that they would look differently than what I had been originally dreaming about and expecting. It didn’t mean his life would be any less meaningful than anyone else’s.
Today Zachary is 15 years old. He has an amazing memory. He has an incredible grasp of math. He can break down the code on his favorite video game apps and change them so the game does what he wants. He has several good friends and I joke that his social life is busier than mine. No, he does not play soccer (or any other sport, for that matter) but he is involved in Boy Scouts, AWANA, and church activities. He enjoys volunteering with his friends and babysitting. He still loves to spin, on his feet now, and we all know it is because it is his way to deal with the world.
Before Zachary’s diagnosis, a well-meaning family member told me that if Zachary did have Asperger’s she would pray for his healing. Asperger’s is not something to heal. Taking Asperger’s away would mean taking away many of the things that make my son who he is…a wonderful young man with a bright future.
Heather Parrott is married to Chris and is a homeschooling mom to Zachary, Ryan and Joshua. She became passionate about autism education when her oldest son was diagnosed with Asperger’s. She serves on the Editorial Advisory Board of Spectrums Magazine and enjoys writing, watching her youngest son play baseball and volunteering with Autism Empowerment and the Boy Scouts of America. You can find her blogging at ConfessionsOfABaseballMom.com
This article originally appeared on pages 14 – 15 of the Fall 2016 issue of Spectrums Magazine available in print and online through Issuu.