15 years ago our boys, Adem and Eren, were diagnosed at 15 months old with autism. At the time we found very little information on the internet with which to write a playbook. Our pediatrician told us that there was no “silver bullet” to change things, but he was very receptive to helping us get what we needed with assessments and therapies.
The internet had remedies.
A hyperbaric chamber, 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 who had autistic kids either. That would have helped.
Maybe it was a good thing that we didn’t know too much.
So we did typical things with our boys
With finding a lot of unproven things on the internet and not knowing what to expect, my husband and I just kept doing things that we would have done had our boys been typical.
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.
Don’t get me wrong, it wasn’t easy. We had two non-verbal, extremely active boys with sensory issues, who didn’t follow directions, and barely could wait in a line. But Hubs and I shuffled along to figure out what they could and could not do. We needed to see the limitations for ourselves and find out things the hard way.
We got help
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. Grade school and IEP’s. 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. Middle school next. As a parent, can you tell the school what vocational program they may be interested in after they learn to tie their own shoes? It’s endless—and we have yet to see what high school brings.
We kept the adventures to ourselves until we started meeting with other parents with autistic kids. We were told we were patient, crazy, saints, selfless, 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.
Deciding to create a video
So when did I write it all down? Six years ago. At work I met three other women who were working on their own creative projects. At lunch they would get together as often as they could, to review their work, critique each other and just talk. Two of those women are on my Surprisingly Complicated project. Jennifer Brooks, who plays me, is an actress and screenwriter. Adrianne Hampton, also a screenwriter, is our production manager. They encouraged me to write these zany stories down. In a matter of weeks, I had 12 screenplays about our family adventures. Next, it was months of conversations about how the scenarios that actually happened could be conveyed on film. How could we make it funnier? Is it relatable? I studied film and video in college, so telling my story in video wasn’t foreign to me, but the odds of it becoming a tangible thing for others to watch and relate to were pretty slim.
Here’s how it played out:
One day Jennifer says she has a bunch of friends she went to acting school with who can get together and read a script. With that I decide if we’re going to go that far, we may as well film it. I find a cinematographer/editor through Google. We do an actor table-read, and with the promise from my husband that he will take the boys out of the house for fun on a specific day in July of 2017, we shoot it in my house.
Never thought we would get this far, but so glad we did it.
The actors did a wonderful job, the shoot went smoothly and editing went quickly, as I knew what I wanted it to look like. The actors that play the boys are also autistic. I needed to make sure on shoot day they were comfortable, engaged, well fed, entertained. I am forever grateful to their parents for believing their boys could get through a scene. The support from those parents means the world to me in telling my story.
We just finished episode two where we tackle dentists and haircuts, Again, it’s what we truly encountered; sometimes you don’t have to make anything up!
—Guest Blog by Guzin Kurun – Email: firstname.lastname@example.org