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Empowering Parents of Children with Autism

Lisa Steppan is a single mother of 16-year-old Sam, who was diagnosed with autism spectrum disorder (ASD) at the age of two. Originally from Nashville, Tennessee, Lisa has lived in Park City, Utah, for 20 years with her family, which includes her two other children, Julie and Jamie. She is a certified Early Childhood and Elementary school teacher with over 10 years of experience in the public and private school systems.

During an Autism Interview, Lisa reflects on her journey with Sam and the various stages they have navigated together.

A is for Awareness – When and how did they 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 him.

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. Lisa felt blindsided by these moments; she wished she had seen them coming, as it could have helped both her and Sam prepare for success.

She recalls an incident at the grocery store when Sam was three. His body stiffened, and tears quietly rolled down his face. With minimal language to express his feelings, Lisa scooped him up, and they left. As soon as they got in the car, smiles and calm returned.

Lisa realized that Sam could hear and see things she 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 attuned to 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, and the smell of the rotisserie chicken all contributed to the overwhelming experience. Yes, leaving the grocery store was the only option. And that was okay.

U is for Unique – How has this experience been unique for them?

“When you meet one child with autism, you meet one child with autism.” This statement, made by a therapist during Sam’s preschool years, has resonated with Lisa ever since. No two children are alike, even though some may exhibit similar characteristics. Each child and each family situation is inherently unique.

From the outset, Lisa chose to see Sam as a gift, believing that he chose her to love him through this world. She committed to understanding him as he is and guiding him through life. This perspective provided her with strength, which in turn empowered Sam.

T is for Tools – What tools are available now that weren’t there in the beginning to help other parents?

Lisa emphasizes the importance of attitude—one’s deep-down, honest attitude. Her journey began with quiet sadness and questions that ultimately served neither her nor Sam. To find hope and support, she needed to step outside herself.

It would have been immensely helpful if their pediatrician had recognized Sam’s behaviors as indicative of a spectrum disorder earlier and guided them to autism specialists and resources for behavioral intervention. At the time, the pediatrician’s lack of concern was a relief to Lisa. However, it was a friend who eventually suggested seeking a specialist. Finding a compassionate pediatrician knowledgeable about autism can make all the difference.

Now, there are countless resources available: books, magazine articles, local and virtual groups for parents, behavioral therapists, diet specialists, nutrition interventions, parent training, community programs with structured physical activities, and social programs for children to join. Some businesses even welcome neurodiverse children.

The public school system has also improved significantly. Schools are now better equipped to aid in early intervention and devise strategies that help children manage daily stressors and sensory overload. This allows them to function in a group and eventually acquire knowledge.

Public schools are legally required to accommodate children’s specific needs. Lisa encourages parents to use these resources and insist on every possible service that could benefit their child. She has been fortunate to encounter many wonderful and knowledgeable teachers throughout their journey.

I is for Inspire – As a parent, what inspires Lisa when she looks at Sam?

Sam has taught Lisa countless lessons. He is an optimist, finding joy in the most unusual places, and this happiness is contagious. The world appears dramatically different when viewed through Sam’s eyes. If everyone could experience life as joyfully and “in the moment” as he does, they would likely find greater contentment.

Sam inspires Lisa to be fully present with everyone, to slow down, and to savor the small joys along with the big ones. Moments of joy with Sam move at full speed, and she is determined not to miss any of them.

S is for Support – What struggles have they faced, and what types of support are still needed?

“Supports” are often elusive; many parents don’t know exactly what they need or who to ask. This can complicate the journey of raising a special needs child. Parents know they require something—a lifeline to remain hopeful, positive, and strong in order to provide their children with every possible opportunity. That’s why the local school system is so important.

Lisa discovered various resources mostly by accident, due to her initial lack of understanding and not asking the right questions. Schools can extend support to parents by sharing information about 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. It is crucial to access this support as early as possible in a child’s educational journey.

Parents often become consumed by daily routines, which are essential for functionality. However, Lisa has learned that financial, physical, emotional, and recreational support is available nearby.

Initially, she had no knowledge of government agencies for planning ahead or healthcare options for early intervention. She was also unaware of functional medicine doctors who could offer supplements to maximize her child’s health and minimize unwanted behaviors.

As more data is shared and more people are touched by autism, whether from a distance or up close, many are learning that they are not alone. And isn’t that what everyone truly needs to hear on tough days?

Lisa likens autism to ocean tides. Some days, it drowns one, making it feel as though they are barely staying afloat. On other days, it’s a frantic paddling just below the surface. And then, there are days when they jump in just for the sheer fun of it, discovering joy in the waves washing over them.

M is for Manage – What keys to success can Lisa offer to help parents better manage their daily efforts?

Flexibility and enthusiasm should be guiding principles. “What you believe about your child’s autism is possibly the single biggest factor in their success,” she states. While guidelines and information are undoubtedly useful, it’s essential to understand one’s own child’s autism.

For example, when Sam was three, he couldn’t enter a clothing store without ducking and covering his ears. Lisa initially thought holding him might ease his senses. It didn’t work, and they ended up leaving. Importantly, she wasn’t disappointed or upset with him. She had to be flexible and let him know she could give him what he needed while remaining happy about it. Leaving the store was the right choice.

Renowned author and autism activist Temple Grandin once wrote: “Being in Wal-Mart is like being inside the speaker at a rock and roll concert.” Some children can manage a trip to Wal-Mart for a brief period or not experience issues at all.

Ultimately, parents know their children best, and they owe it to them to understand their individual needs. Achieving this requires significant pre-planning to ensure success in day-to-day living.

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