The old saying is that if you have met one person with autism, then you have met one person with autism. I believe that statement to be true … I have never met anyone like my son AJ.
My AJ
AJ will be 8 years old this June. He is severely affected by autism and remains non-verbal. However, AJ is much more than his autism. He is also magnificent, affectionate, funny, quirky, intelligent and adorable. We see past his autism and into his heart of pure gold, but that wasn’t always so easy to do.
It became apparent to me that AJ was “different” by the age of 6 months old. Everyone told me I was crazy, sleep deprived or had new mom nerves, but a mom knows. When he would look at me, it was always as if he was looking through me. It was always so hard to get him to smile and when he did, it was extremely short lived. There were no typical baby babbles, only gurgles. All signs I would later learn pointed to autism. “It will come, boys are delayed, remember he was born a few weeks early.” This was happening when I was also pregnant with my younger son, Holden, who was born when AJ was 16 months old.
A Little Help
We started with early intervention when AJ was about 19 months old. A therapist would come into our house twice a week and try to engage with AJ. After the session was over, AJ was still in his own world, and the therapist was exhausted, but we had just started so I needed to allow time for this to work, right? Wrong!
Several months later, I took matters into my own hands and brought him to a well-regarded speech specialist. She worked with AJ for an hour and finally turned to me and said, “You are not crazy … there is something definitely wrong here.” My hardened mom exterior cracked, and I cried like a baby on her shoulder. After a few minutes, I dried my tears and decided to fight to give my son the best life possible.
A Lot More Help
My research took me to Autism Speaks, which connected me to resources and information to guide us through the process of supporting AJ. I learned that autism can interfere with social interaction and cause highly restricted interests and, in some people, repetitive behaviors or sensory challenges, such as sensitivity to light or sounds.
AJ was officially diagnosed with Autism Spectrum Disorder at the age of 23 months. It was both liberating and heartbreaking. There was no time for tears, questions or doubts. We went into immediate action with 40 hours a week of Applied Behavioral Analysis (ABA) therapy, including speech therapy, physical therapy, occupational therapy. We turned our living room into a preschool for AJ, complete with a therapy swing hanging from the ceiling. We had a group of nine therapists who were in our house seven days a week. AJ’s therapy schedule became a full-time job. One therapist would let herself out and the other would arrive.
This continued for several years, and we saw growth in areas and stagnation in others. With a lot of blood, sweat and tears, we began to see AJ start to stack rings, to occasionally respond to his name, and he started to smile and giggle more often. But there was always one major thing missing – his voice.
And Even More
At the age of 4, we decided we needed to make another change to help get AJ to the next level. We enrolled him in full-time preschool at the Fred S. Keller School. In that environment, we saw even more progress, but still not speech. It was around that time that we met a wonderful woman who is still with AJ today. His speech therapist, Jennifer DeMatteis, took one look at AJ and realized that he wasn’t speaking because he also has apraxia, a speech disorder that commonly affects those with autism.
This finding helped us better understand what AJ needed. Today, he is in third grade at a specialized school for autism. He is still non-verbal, but can functionally communicate through an iPad. He is making incredible gains, and our hope is that he can one day join his brother, Holden, in public school.
We have now settled into our life with AJ and his autism. He is happy, loving and has an incredible support system. As a parent, it took me a bit longer to accept the reality. I have now come to realize that AJ is who he was meant to be. Each year, we look forward to our chance to support AJ and others like him through the Autism Speaks Walk. It reminds us not to look at the things AJ cannot do, but rather celebrate his personal milestones one step at a time.
Sarah Kooluris is a stay at home mom of two boys, AJ, age 7 and Holden, age 6. Sarah serves as PTO President at AJ’s school, Devereux. She has co-chaired the Westchester Fairfield Autism Speaks Walk in 2014 and 2015. Since starting to walk with Autism Speaks, her team has raised more than $130,000. The Kooluris family lives in Pleasantville, NY.
Autism Speaks Walk: You Can Help
Sarah and her family are among hundreds of families, friends and neighbors who come together at Autism Speaks Walks to support children, teens and adults with autism. This community event provides an opportunity for families to connect with others affected by autism. There are also information tables for those who simply want to learn more about autism, its impact and how they can help.
The Autism Speaks Walk Westchester/Fairfield 2017
New York Presbyterian Hospital, Westchester Division
June 4, 2017
Registration 9 a.m. The opening ceremony and walk 10 a.m.
Register: Autis
