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.
Lisa Steppan is a single mother of 16-year-old Sam, who was diagnosed with autism spectrum disorder (ASD) at the age of two. Lisa is originally from Nashville, Tennessee, and has lived in Park City, Utah, for 20 years with her family, including her two other children, Julie and Jamie. Lisa is a certified Early Childhood and Elementary school teacher with over 10 years of experience in the public and private school systems.
A is for Awareness – When and how did you first become aware that something was different?
At age two, Sam was not talking at all. At home, he was banging his head on hard surfaces and laughing about it. Apparently, he was seeking that “zing” that only a knock on the head can give you.
In public, he was coping in the only way he knew how: trying to shut out the world by covering his ears. Sam would cry at unexpected times. I just didn’t see it coming; I missed it and could have prepared both of us for success.
I recall once in the grocery store when he was three, his body stiffened and tears quietly rolled down his face. As his language was minimal, he just couldn’t express his feelings verbally, so I scooped him up and we left. As soon as we got in the car, smiles and calm returned.
I realized Sam could hear and see things I rarely noticed. The colors, the shapes, the lights, the smells; it was all coming at him at once! Sensory overload! Most children with autism are so in tune with the slightest of noises, smells, and sights. The squeaky wheels on a grocery cart, the baby crying in aisle four, the music piped in from above, the hum of the fluorescent lights, the smell of the rotisserie chicken. Yes, leaving the grocery store was the only option. And that was okay.
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U is for Unique – How has this experience been Unique for you and your child?
“When you meet one child with autism, you meet one child with autism.” That’s something a therapist once said that has stuck with me since Sam’s preschool years. No two are alike, even though some exhibit similar characteristics. Each child and each family situation is inherently unique.
Early on, I decided Sam was a gift to me, even believing that he chose me to love him through this world. I chose to know him as he is and guide him through that. Taking that stance gave me strength and therefore gave Sam strength.
T is for Tools – What tools are there now that were not there in the beginning that could help other parents?
I have to mention attitude—your own, deep-down, honest attitude. My journey started as one with a quiet sadness and quiet “whys?” Those did not serve me or my child. I had to get outside of myself to find hope, support, and some sign that I wasn’t alone.
It would have been hugely helpful if our pediatrician had identified Sam’s behaviors as a spectrum disorder earlier on and guided us to autism specialists and resources for behavioral intervention. She just didn’t seem worried, which at the time was a relief to me.
It was a friend of mine who suggested a specialist. Find a compassionate pediatrician who is well informed about autism and who has resources to guide you.
There are so many resources now: books, magazine articles, local and virtual groups for parents, behavioral therapists, diet specialists, nutrition intervention, parent training, community programs with structured physical activities, and social programs your child can join. There are even places of business that will welcome your neurodiverse child.
The public school system is so much better equipped now. Schools can aid in early intervention and devise appropriate strategies to give your child the coping methods to manage daily stressors and sensory overload, so he/she can learn to function in a group and eventually acquire knowledge.
Public schools are required by law to service your child’s specific needs. Use them; insist on every single resource and service your child might benefit from! We have been blessed with many wonderful, knowledgeable teachers.
I is for Inspire – As a parent, when you look at your child or children, what inspires you?
There are so many things Sam has taught me. Sam is an optimist! He captures joy in the most unusual of places, and it’s contagious. The world looks so different when I look at it through his eyes. If we could all be as happy and “in the moment” as Sam, we would certainly be more content human beings overall.
Sam inspires me to be fully present with all people, to slow down, to languish in the small joys and the big ones. Moments of joy with Sam run at full speed. I don’t want to miss any of them!
S is for Support – Are there things you struggle with or have struggled with, and what types of support do you still need?
“Supports” are something you aren’t sure you need, mostly because you don’t really know what to ask for or who to ask. That’s the tricky thing about “support” for your special needs child. You know you need something, someone, a lifeline to stay hopeful and positive and strong, giving your child all the opportunities possible. That’s why your local school system is incredibly important.
I found out rather late, mostly by accident, and because I didn’t ask the right questions early on. Schools can extend support to parents by sharing resources for programs like the Division of Services for People with Disabilities (DSPD), vocational rehab, comprehensive healthcare options, nutrition counselors, small social groups, and organized recreational outings specifically for children with autism as early as possible in the child’s educational journey.
Parents get tied into the day-in and day-out functioning and routines, which are essential. But, I know now that there is financial, physical, emotional, and recreational support close by.
I didn’t know about government agencies for planning ahead or healthcare options for early intervention. I didn’t even know about functional medicine doctors who could provide supplements to maximize my child’s health and minimize unwanted behaviors.
As data continues to be shared and more and more people are touched by autism, whether at a distance or close to home, many are learning they are not alone. And isn’t that what all of us really need to hear on some days?
Autism is like the ocean tides. Some days it drowns you and you are barely staying afloat, and some days you’re paddling frantically just under the surface. And then, there are days you jump in just for the simple fun of it and find joy in the waves washing over you.
M is for Manage – What keys to success can you leave with parents so that they can better manage their day-to-day efforts?
Flexibility and enthusiasm! You must let these be your guide. I’ve heard it said that “what you believe about your child’s autism is possibly the single biggest factor in their success.” Guidelines and information are helpful for sure, but it is essential to know YOUR child’s autism.
For instance, my child could not walk into a clothing store at age three without ducking and covering his ears. I thought holding him would ease his senses. It didn’t, so we left. And the key to all that is that I wasn’t disappointed or upset with him. We left the store, and I had to be flexible and let him know that I can give him what he needs and be happy about it. He needed to leave, and so we did.
Author and autism activist Temple Grandin once wrote: “Being in Wal-Mart is like being inside the speaker at a rock and roll concert.” Other children can manage Wal-Mart for a short period of time or with no issues at all.
Again, you love your child best, so you owe it to him/her to know his/her autism best. And this takes a lot of pre-planning so success can be achieved in day-to-day living.
I would also incorporate physical activity into every day! Exercise releases chemicals that are natural stress relievers. Always remember that your child’s stress may not look like our stress. One way we stay active is through the National Ability Center. Their specifically designed adaptive programming creates a level playing field for people of all abilities and has been an incredible resource for my family.
We participate in the NAC’s programs regularly and Sam enjoys paddle sports, skiing, and outdoor rock climbing the most. He’s ridden in the annual Summit Challenge for the past four years and also trains with Team Flyers for the spring ski races.
You can pre-empt stresses and sensory overload by giving your child a dose of physical activity. It’s like putting reserves in his/her tank, so he/she can draw on it if needed.
This article was featured in Issue 124 – Autism Around The World