Encouragement Speaker Derrick Hayes gives an AUTISM Interview by asking six questions through each letter in the word AUTISM to give readers an insightful perspective from parents, experts, entrepreneurs, and other leaders in the field.
Today’s AUTISM Interview is with Chad R. MacDonald, who is a writer, speaker and autism advocate in New York who once stopped a crime in a superhero suit.
A is for Awareness
When and how did you first become aware that something was different?
Liam had delayed speech. When he still wasn’t speaking after he turned two, our pediatrician at the time referred us to speech therapy.
But even before then, I’d had more than an inkling something was up. Liam had (and still has) a habit of flapping his arms when looking at, say, a ceiling fan, or moving water, and sometimes would double over while flailing his arms. I didn’t see this behavior in any other children.
I now know that this is the phenomenon called “stimming” and why he does it. But at the time, it was this behavior that inspired me to press for further analysis, even when my family, my friends, and even our doctor kept assuring me I was worrying about nothing.
U is for Unique
How has this experience been Unique for you and your child?
Liam was super focused on the wheels of vehicles and was reluctant to engage in imaginative play or to socialize. I used my love of superheroes to draw him out of that, as the bright and colorful characters were impossible to ignore. And once he discovered how a cape would fly out behind him when he ran, Liam immediately became enamored with pretending to be a superhero.
So we became superheroes together. From the ages of three through five, Liam either had to be taken somewhere for therapy or stay at home while a therapist visited. That left us exactly one afternoon, on Wednesdays, for him to have free time to play. We both loved superheroes, so would go to Central Park in full regalia, capes, masks, accessories, the whole bit. There, we would run and play and just have Dad and son time.
To this day, Central Park remains an Event Day for us, whenever we decide to go. Now other factors get involved, like baseball or stomp rockets, but we still break out the capes once in a while.
T is for Tools
What tools are there now that were not there in the beginning that could help other parents?
This depends upon where you are, of course, but here in New York, there is so much available to parents. Mind you, it takes patience and persistence to deal with the red tape, but if you stick to it and stay organized, the rewards are tremendous.
Liam received speech therapy at home as well as Applied Behavioral Analysis (ABA) therapy. He met with occupational therapists to improve his core strength and fine motor skills. He would attend sessions at Educational Alliance on the Lower East Side with other children to help his socialization and to fine-tune his speech and ABA therapies.
As a result, when Liam reached pre-school, and then Kindergarten, he hit the ground running. He was already used to the structure of a classroom and perfectly comfortable with listening to and respecting the instructions of his teachers. That meant that he actually had a leg up in school, and has even been a star student.
I is for Inspire
As a parent when you look at your child or children what inspires you?
What inspires me is that he’s happy. There is no greater measurement of success for me than to see him happy. He loves his life. He loves where we live. He loves his family. He loves going to school, or to camp, or to swimming or to skating. He creates art. He plays sports. He reads comic books. He builds robots!
Before Liam came along, I could measure my growth as a person by inches every year.
Now, I can see myself grow by miles every day.
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S is for Support
Are there things you struggle with or have struggled with and what types of support do you still need?
Helping Liam would have been impossible if I hadn’t transitioned to a Stay at Home Dad and then a Work at Home Dad, to ensure he made all of those therapies and was ready for his visitors.
As a result, for a long time, I had a difficult time dealing with the fact that I wasn’t the primary breadwinner in my family. While I’m perfectly aware that this is a gender stereotype, it would bother me that I wasn’t contributing more financially.
Also, Liam craves motion and speed. Because of this, he’s incredibly active, and always needs something to do, or to be occupied with. He has not napped since he was two yars old, and even then, he fought naps tooth and nail, and he’s always on the go. He literally runs circles around other children. He has three cousins, and he outlasts them all every time we get together. At the playground, other parents marvel at how he is in perpetual motion.
I try to walk with him everywhere, and he usually runs ahead of me, runs back for a high five, and then runs ahead of me again. Repeat ad infinitum. I normally have him wear a backpack full of snacks and toys, and it does absolutely nothing to either slow him down or tire him out.
It. Is. Exhausting.
Still, the decision to stay home with Liam remains the best one I’ve ever made in my entire life. I would do it again.
M is for Manage
What keys to success can you leave with parents so that they can better manage their day to day efforts?
Organization is key. Nobody likes homework, but in this case you need to have it done. This is where my wife has been amazing.
Review your files often, and with your partner. Take the expression “get on the same page” quite literally. When it’s time for a therapy session, a meeting, or a doctor’s appointment, you’ll be ready.
Create files for everything pertaining to your child, documents in a cabinet, and files on your computer. Put chalkboards or whiteboards up somewhere, have a weekly schedule and a daily schedule. This will not only help your child adjust to transitions and feel more confident about that day’s plan, but it will boost your own confidence as well.
Because if you miss some of these meetings, or are unprepared for them, you will set your child’s progress back immensely. It will be your fault he/she isn’t getting the help needed.
Connecting with Chad R. MacDonald via social media
This article was featured in Issue 95 – Managing Autism Together