In 2003 our boys, Adem and Eren, were diagnosed at 15 months old with autism. At the time, we found very little information available to figure out what to do next. Our pediatrician told us there was no “silver bullet” to change things but he was receptive to helping us get what we needed with assessments and therapies.
The young internet, at the time, had remedies: diet protocols, mud baths to remove the metals and toxicity from their systems that autistic individuals supposedly had, and tons of info on what teaching/learning method would make them more verbal and compliant. That’s all we had. We didn’t know anyone else who had autistic kids. That would have helped.
Maybe it was a good thing we didn’t know too much. We did typical things with our boys. My husband and I just kept doing things that we would have done if they didn’t have a diagnosis. Dance lessons: ballet, tap (they hated their tap shoes), jazz. A playgroup for socializing. Sometimes they were receptive. Bowling they loved. Swimming was the jam! Learning to ride a bike took three minutes and was a complete joy to witness. Skiing? We put skis on them and pushed them down a bunny hill. Not a bad outcome. Do they like airplanes? How about a one hour flight from NY to Myrtle Beach on Jet Blue? We hear they serve corn chips, and the boys love corn chips.
A shot in the dark every time. Always an adventure.
A social worker came to our house as soon as they were diagnosed and wrote out a blue print I still follow today. Early intervention, find a school/program they can benefit from, measure progress, reassess, understand limitations, don’t aim too high or too low. We went with an ABA program, occupational therapy, speech therapy and one-on-one time with special education teachers that made home visits. Grade school and IEP’s were next. Can they tolerate a 15 minute lesson? Occupational therapy five times a week. They like deep pressure massage, speech therapy five times a week. Maybe they can learn sign language. Then middle school next. It’s endless — and we have yet to see what high school brings.
Don’t get me wrong, it’s not easy. On of my kids is nonverbal, and one is emerging verbal. Both are extremely active boys with sensory issues. Sometimes they can follow some directions and sometimes they can’t. But Hubs and I shuffle along to figure out what they can and cannot do. We need to see the limitations for ourselves to be prepared for a next time.
When they were younger, we were told we were patient, ‘crazy,’ saints, selfless. We kept the adventures to ourselves until we started meeting other parents with autistic kids. Some parents were doing the same. My favorite part of this journey has been meeting other families. There’s such a commonality and I’m comforted when a mother tells me she’s scared for when she is no longer here to take care of them, because I’m scared, too.
Five years ago, I decided to write all our adventures down. I have a degree in video and journalism, and I have a story to tell. I wanted to create a sense of normalcy around the issue of parenting children with autism, and I wanted to do it through comedy. A sense of humor has kept our marriage together and has opened our family up to getting out and just trying things with our boys. I have created a scripted show called, “Surprisingly Complicated,” based on the reality of raising two boys with autism.
Never thought we would get this far, but so glad we did it.
“Surprisingly Complicated” is a lighthearted comedy about the everyday life and true experiences of raising my twin boys with autism. Our reality. The actors portraying my boys also have autism, I wouldn’t do it any other way, and those boys are incredible.
In the early years of our diagnosis, all we needed was a safe place to tell us life would go on just a little bit different than planned.
“Surprisingly Complicated” depicts daily situations we come across with our sons, such as going to get a haircut, going to the dentist and all the “quirks” our boys have shown us through the years. The idea behind the comedy show is to shed light on raising children with autism. I think autism is shown in the media as either savants having these brilliant talents, or it’s shown as a disability that is very dark. I think there’s a need for “Surprisingly Complicated,” because families like ours are not represented on television. My series helps normalize autism and represents that the day-to-day struggle is real, but you can still laugh. The point is it can be a struggle, but it doesn’t have to be miserable. All I can do as a parent is prepare them for our world on their terms. We’re their best advocates.
You can watch it here: www.surprisinglycomplicated.com