My Son With Autism Was Born to Soar
Where did 10 years go? My first-born son, Javier, is now in the double-digits. Motherhood has been the biggest blessing, although full of more challenges I thought I’d ever face! At the end of my pregnancy, I watched a talk show featuring celebrities speak about their children with autism. Not being very informed, I listened intently, not fully knowing how diverse it was. I never thought that my son would later be diagnosed with autism spectrum disorder (ASD).
Navigating through the road of autism has been a winding one. My son was diagnosed at five years old with Asperger’s syndrome, which was then changed to high-functioning autism. He was diagnosed later than usual because the doctors who examined him did not see the behaviors that we did at home. To them, he was just hyper, and most doctors used the words “hyperkinetic” or “ADHD.” He was finally diagnosed with attention deficit hyperactivity disorder (ADHD), anxiety, obsessive compulsive disorder (OCD), and sensory processing disorder. My husband, a physician, didn’t encourage me to get his diagnosis, which may seem ironic. Maybe it was him being the proud father, not wanting to admit the challenges Javier faced, and acknowledge his neurological differences. I look back on how fast 10 years have passed and I wish I documented our journey more. The fact is, this fast-paced winding road didn’t leave me much time to write much since his brother, Diego, was born when Javier was only 22 months old. I was juggling a newborn and a toddler showing signs of autism, and trying to help Javier in the midst of little family support as we were living on a military base in Arizona.
Javier was a very emotional baby and still is an emotional kid. He is able to calm himself down now that he’s older. I was in labor 26 hours, which was too long of a wait to meet him! When the nurses brought me my “little prince,” he seemed to be hard to calm down. He wasn’t able to latch on to nurse, which made him even more frustrated. Working with a lactation consultant for a couple weeks, along supplementing with formula became the plan. He finally was able to breastfeed, which made for a happier baby since the formula was too hard on his digestive system. I noticed Javier was an insatiable eater, and frustrated easily, but was a happy baby besides the tantrums. He also was always watching spinning objects, loved to be constantly rocked or in a swing, and was always moving his feet in a circular motion. He was able to make eye contact as a baby, but with his distractibility it was hard to sustain for long. In his infancy I didn’t know he would be diagnosed with autism, although I felt he was different, but had no other children to compare him to yet.
As he grew, my instincts prompted me to research further into what was going on with Javier. He was constantly sick with ear infections, colds, or allergies. He had a hard time sitting still and was always on the move. He was able to focus on activities he was interested in like his trains, books, or movies. His social behaviors concerned me significantly since he played alongside children most of the time and was not confident with interacting. He seemed more comfortable in small play dates with one or two children than in larger groups. I also noticed Javier had certain obsessions with certain toys and movies. He loved toys with soft textures, and I attributed that to his sensory processing disorder since he was a “sensory seeker.” In preschool he would seek out girls with long blonde ponytails to touch their hair, not only for its feel but because at that time he had watched and become fascinated with the movie Tangled. Javier’s toddler and preschool years presented me with many questions for which I searched for answers. Our journey down the winding road of autism was taking me on a ride for which I was not fully prepared.
Little did I know how much I would learn about myself and about being a proactive parent than by parenting my son. Javier has taught me to be patient, understanding, tolerant, silly, and to always search for answers. I have never met a more curious and determined kid than him! When he sets his mind to something, he gives it 110 percent! Never did I think my son would be a level-5 competing gymnast when he was first diagnosed. I attribute all our hard work together to his success as a student and athlete. It wasn’t an easy road to get here, and we still have our days. Countless doctor appointments to pediatrician and specialists, lab work, supplement and medication trials, special diets, and therapies have been part of the journey. Finding a doctor I trusted was the first step in helping with a plan with Javier’s treatment. She gave me books and magazines about autism, support group information, as well as diet and nutrition resources. She has an adult son with autism and has been through the journey herself, which gave her instant credibility in my book. I’ve learned through this journey that every child on the spectrum is different, although there are many similarities. A specific diet, therapy program, and medication may work for one child but not for another.
After many labs, Javier was showing an elevated ammonia level. It was hard to diagnose why that was happening, but after adding in digestive enzymes, probiotics, vitamin C, and changing his diet, that level started to drop. I tried a variety of different supplements, but saw too many negative side effects with some. For instance, vitamin B12 would cause his hyperactivity to go through the roof! I ended up keeping him on an organic, whole-foods diet that is also gluten free and limits dairy—no processed foods with dyes or artificial sugars, fast food, or soda.
Javier entered an applied behavior analysis (ABA) program that was fortunately covered by our insurance. He had some behavioral issues such as not recognizing personal space, disrupting and interrupting, and running away and hiding when frustrated. After a year and a half of ABA, he was released from the program. He wanted to take gymnastics classes at the same time we started ABA, which greatly improved his motor skills and strength. The other benefits of the gymnastics team were improved social skills, focus, and teamwork values. His dedication and focus to the sport caused him to move up quickly within team levels. He has big goals of becoming an Olympic gymnast, and I fully support his dreams.
All we ever want is acceptance, love, and validation. I can see this is what my son wants from not only his family, but from his peers and teachers. Children with autism have a difficult time expressing this desire. Spreading awareness among those around us, especially to those around the diagnosed child, is important. I will never stop being my son’s loudest advocate and supporter. Javier is such an inspiration, and this mom is so proud!
This article was featured in Issue 69 – The Gift of Calm This Season