Autism Mom

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Our son, Luca, began to read at eighteen months. By the time he was two, he had taught himself phonics and words that were exceptions to the rules like the words “through” and “phonics”. At check-ups his pediatrician would ask us if he had a certain amount of words in his vocabulary and he always had well beyond that. This was quite remarkable for a child of his age, but what was more remarkable was that despite all this, Luca could not say “hello“ “goodbye” or even tell you his own name.

Our son was born with a rare life threatening congenital heart defect. He had had two open heart surgeries before the age of one. A cardiac anomaly was found at five months gestation. Doctors could not accurately determine what it was, but something was brewing. We expected a “situation” but were quite unprepared for his life after birth. 

As a result of Luca’s condition, he received early intervention in the form of physical and occupational therapy from when he was six months old. He continued with early intervention until three years of age. Shortly after his second birthday, Luca’s occupational therapist told me that he had what is called “splinter skills”. This means there are some skills the child meets beyond expectation and others for which they are markedly delayed. This is how the conversation about autism began. No one ever says the word outright to you, they dance around it until it comes out of your mouth so that they can agree. I am a direct person so I did not let the dance go on very long. “You’re saying he’s autistic.” She, also refreshingly direct, said “yes, I think he could be. You will need to get him evaluated.” The rest of what she said about his being high-functioning and having a ton of skills came like little whispers under a bellowing sob in my head. I shed one tear in front of her and asked what we should do next.

I am not a callous person nor am I particularly strong. I knew that if I had let go at that moment, there would be no end to the grief and anger that would have poured from my soul. After Luca’s second open heart surgery I could feel it welling up inside of me and that’s when I began to push it down. By that point, I had already learned that my plans for my child and myself had died. 

I distracted myself from these feelings by  focusing on solving problems. I got on the phone immediately to schedule an appointment with his neuro-developmental pediatrician. A child cannot be diagnosed with Autism Spectrum Disorder until he or she is two and Luca was slightly older. We were fortunate to get an appointment relatively quickly; some parents wait months to get an initial evaluation.

First we saw a nurse who then referred us to the doctor who asked us questions while keenly  observing Luca. She pronounced him brilliant and autistic.  I was more surprised she could determine a child’s brilliance at two and a half than I was about the diagnosis.

When you’ve watched your child suffer unspeakable things, nothing surprises you. What I was, was pissed. I was angry, irate, and livid at everyone, especially God and myself. It was pure arrogance on my part to believe that it was God’s duty to protect my child from his own anatomy. It was self aggrandizing to believe that I could have taken matters into my own hands and made Luca something other than what he was. Nonetheless, if given the power to unleash a flame, I would have set the world ablaze.

I created my own special brand of denial based on Luca’s medical condition. Fifty percent of children who have had more than one open heart surgery before one year of age will have physical and developmental delays such as delayed physical and motor skills, delayed speech and social interaction, sensory issues, and the list goes on.  Although the list is extensive, what is not included is delays in cognition. Does this seem familiar? These are signs of autism. There is little research about school age children with severe congenital heart defects because until ten years ago, they were not surviving until school age. As far as we know, Luca is the only living child with his particular anatomy and no one quite understands why. I did not want my son to have two struggles in his life. This seemed insurmountable. I continue to believe that his autism is a result of his heart condition and emerging research tells me that I am correct. I normally thrive on being right, it gives me a sense of control in my outward spiraling world, but in this case it doesn’t really matter, does it?

I did not hesitate to attach the ASD label to my son. It opens the door to many services at the most important early stages of development. Luca was transferred from an OT to a Board Certified Applied Behavioral Analyst. A BCBA records and analyzes behavior and applies different strategies to decrease the undesired behaviors and increase the desired ones. Behavioral analysis can be a divisive topic within the ASD community. Early behaviorists were extremely rigid and would often cause trauma in their patients. We have been fortunate to work with behavioral therapists who Luca trusts and enjoys. Luca is what behaviorists call “self-directed”. If you read between the lines that means stubborn.  This is an inherited trait and is quite likely why he is still alive. Rather than try to hammer a square peg into a round hole, Luca’s therapists give him choices and play games that help him to be more flexible. Just like his mama, he needs to feel in control to feel safe.  

Just before Luca turned three, we moved to a school district that offered a self-contained ABA classroom starting in pre-school. Luca made tremendous progress in the program and his teachers loved him like he was their own. Everyone who has ever met Luca has fallen in love with him. His name means light and he truly carries it with him. I was an atheist before I met Luca. Now I tell him every night before bed “God walks with you.” If you met him, you would know it’s true. 

In September of 2019 we got walloped by the third open heart surgery. The doctors at Columbia decided to send him to one of the country’s preeminent surgeons at Stanford and even he had not seen a case like Luca’s.  Nonetheless, by the grace of God, the surgeon insisted on taking on Luca as a patient. We arrived in February 2020, just before the pandemic hit.  What was one open heart surgery became two. What was a three week hospital stay became six. Then we were stuck in California for the first wave of the pandemic. We did not return home until three months after arriving.  Luca had to learn to breathe, drink, eat and walk again.  The medical team didn’t believe he could do it before leaving the hospital. They had not met us. The day before we left the hospital, he was breathing by himself, eating like it was the last supper and running in the courtyard. 

When he started virtual school again he had unsurprisingly regressed. It was a stressful time but just like at the hospital, he picked up steam and began to run, then to soar. He rapidly gained back his previous skills and began working on new ones. The problem was his behavior. Since being at the hospital, he had become prone to tantrums, and was using far more motor and oral stereotypy, some people call this “stimming”. It is the repetitive physical or vocal patterns that an autistic person can get stuck in in order to block out or receive more stimulation from his or her environment. He also had to be re-potty trained. I knew virtual school was not enough, so, with the help of his case manager, I set about finding another solution. 

I was able to hire an in-home behavioral therapist for twenty-five hours a week through my insurance. This is highly unusual but I’m a teacher and we have excellent insurance. Since the therapists have been coming to our home, we have witnessed a sea change in Luca. He is far more independent, communicative, and involved in the world around him. He still is potty  training, he still has food aversions, he still needs to be prompted to interact and his speech is still developing, but believe me when I tell you, this child is the fire setting the world ablaze that I so longed for.

Here is what I can tell you about ASD. Every experience is different. We have broken free of the “high” and “low” functioning labels because every person with autism has their strengths and struggles, just like every neuro-typical person. It is a spectrum, not a meter. You may see autistic people as weird; they are and so are you. Perhaps you imagine that autism parents are exhausted and fretful. Well, aren’t you? Our kids have personalities and moods just like yours. They drive us nuts, make us laugh and bring us unfathomable joy, just like yours do. I have fought with superhuman strength for my Luca. Together, we have brought towers crumbling down to rubble. You may not ever find yourself in my position but believe that you and your child are capable of the same.

Luca has brought with him a great deal of uncertainty. We know nothing about the future for our family and cannot even make assumptions. When asked how he is doing medically, my husband and I say “He is currently stable and happy as a pig in shit.” Those who know, know not to ask about his progress with autism; they simply comment on the positive changes they see and bathe themselves in his light. We live in moments of surprise, fear, joy and excitement. This is a life with autism. This is a life with medical fragility. This is a life.

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