What Autism Means for Mothers

A Post by Merrick Egber

With May 14 being Mother’s Day, we wanted to share the stories of three mothers from different backgrounds who have worked for the Els for Autism Foundation® to give people with autism better lives.

Our first mother is Liezl Els, the Co-Founder of the Els for Autism Foundation. She is the visionary of the one-stop-shop model for any autism treatments and therapies and the mother of Ben Els. Liezl is hard at work validating our Global Mission and Vision statement ‘Where Possibilities are Endless.’ In addition, her daughter, Samantha ‘Sam’ Els, runs a sibling support group called Sam’s Sibs Stick Together Room that meets every third Tuesday monthly.

Our second mom, Pam Minelli, founded the Autism Project of Palm Beach County. Without her presence, the wealth of autism services in Palm Beach County would be more impoverished. In addition, she serves on the Board of Directors at the Els for Autism Foundation.

Our third mother is Shelly Hedge, who has been our point person for accounting for eight years. She was hired around the time that I was and now has the position of controller. Her son, Collin Hedge, has participated in many of our programs and services. Her daughters also have supported him and other individuals with autism through their work with autism communities.

What were your first impressions upon hearing the son’s diagnosis of autism?

Liezl: “My reaction when Ben was officially diagnosed was not very dramatic as it was a mere formality for us at that stage. We already knew/suspected he was on the spectrum. But, for most parents, it probably comes as a bit of a relief as it gives you direction and support going forward.”

Pam: “It took us a while to diagnose Andrew. All the experts told us he didn’t have autism because he had excellent eye contact. We were finally relieved to get the diagnosis, so he could receive more services and enroll in preschool.”

Shelly: “Honestly, I was somewhat devastated to think he would not experience the same joys, love in relationships, and long-term independence. It was a flood of emotions.”

How did you adapt to your son’s new challenges?

Liezl: “We were lucky in the sense that Ben was an easy baby and toddler. Our lives didn’t have a        drastic change other than the interventions. Our changes came gradually over the years as he slowly fell further and further behind his peers in his development.”

Pam: “I speak for most parents in that your entire world revolves around caring for and advocating for your child. Those first few years of tests, assessments, ABA, speech, OT, and physical therapy were all-consuming. So early on, my husband and I established Wednesdays as our date night, which made a massive difference over the years.”

Shelly: “Collin was diagnosed at 13 months, so we immediately sought resources and programs to help him with his educational and therapeutic programs. We entered him in Early Intervention Program at St. Mary’s and subsequently found ABA, SLT, & OT for him as supplements. It was pretty overwhelming but gave us focus on his future goals.”

What was most rewarding about having a son with autism?

Liezl: “Ben’s laugh and constant wish to make others laugh was definitely the biggest blessing. He made all of us appreciate the smallest things in life. Things that before we took for granted, like crawling and walking, every milestone hit became a celebration.”

Pam: “Probably the unconditional love we receive from Andrew every day. I still get to snuggle and smother my 25-year-old son with kisses every day. We didn’t have to go through the terrible teens with Andrew. He hugs us every time he sees us!”

Shelley: “The community of individuals who have come into our lives, including therapists, teachers, parents, neighbors, co-workers, and even those in the community who have a unique understanding of or interest in autism and what the needs associated with it are.”

What advice would you give new mothers about having a child with autism spectrum disorder?

Liezl: “I think the most important thing to remember is that, just like no two individuals on the spectrum are the same, no two families will cope with it the same way. Forgive yourself for your mistakes and make peace with them. Love your child unconditionally and cope with life in the best way for YOUR family. You must find the rhythm for your family and make it work. We are all just trying our best to keep things together.”

 Pam: “I always advise Mom – get your child on the Medicaid Waiver waiting list with the Agency for   Persons with Disabilities!”

Shelly: “Consider the diagnosis a gift in understanding that not everyone is the same, allowing you to alter your goals for the future. Also, it is not the end of the world, as there are so many considerations to consider. You will find support along the way, and it will be manageable.”

What would you say if you came face-to-face with yourself in the beginning stages of motherhood?

Liezl: “If I saw myself, I would say, ‘RELAX,’ you will be OK.”

Pam: “If I came face-to-face with myself, don’t worry much about Andrew. You’ll all be OK.”

Shelly: “There is no time limit on the successes or growth of Collin. At the time, we thought if he did not speak before age 5, he would be non-verbal. However, each person has individual strengths, and even if he does not follow the ‘typical’ growth, he will still have a happy, joyful life that may not match the standards. Also, the people you will encounter on this journey will surprise you!”

What resources did you use to support you as a mom and your child?

Liezl: “At the start, just after being diagnosed, we used Autism Speaks. Over the years, we would try whatever worked best with Ben as we were living in the UK, and the resources were far more limited than in the US. We eventually moved to the US to start his school life at The Learning Center. Ernie had announced at one of his tournaments that Ben was on the spectrum, and from that point on, we had so many e-mails from people wanting to help. It was both heartwarming and overwhelming. A lot of excellent information came out of those letters, and if it weren’t invasive, we would try it. You quickly learn that you must ensure these suggested methods are evidence-based, or you will drive yourself and your child insane.”

Pam: “The Learning Center and The Learning Academy charter schools were a great source of support for many years for Andrew and our family. Andrew was supported in our home through Positive Behavior Support’s ABA services, and FAU-CARD was a great resource over the years. Our friends and family were also a loving support system!”

Shelly: “When he was little, our entire focus was to improve his learning skills. We enrolled him in over 30 hours of services for all modalities.”

What resources do/did you use that are provided by Els for Autism?

Liezl: “We, as a family, use just about everything we can from Els for Autism. Ben is a happy member of The Learning Academy and has also started with a few hours per week in the Adult Day Training program. Our favorite thing is the rec programs with dance being his all-time favorite.”

Pam: “Andrew attends Els for Autism’s Adult Day Training program Monday through Friday. We are all very excited about the opening of the new Stoops Family Foundation Adult Services building, where Andrew will have more opportunities to work on his communication, social and vocational skills. We are so grateful to Ernie, Liezl, Samantha, and Ben Els for everything they have done for our family and many more families in Palm Beach County and worldwide.”

Shelly: “So many, including the Adult Day Training program, speech language therapy, and all the rec programs (tennis, fitness, golf, yoga, kickball, music, and art). He has also participated in vocational rehab. We are so grateful and fortunate to have these programs available to him as an adult! We are so looking forward to the continued growth of the Adult Services with the new building and programs!”

Thank you Liezl, Pam, and Shelly for sharing your stories. Show your appreciation to the mothers who cared for you, showed you support, and guided you when you needed to find a way through.

This month’s podcast has a special guest, Gyasi Burks-Abbott, who wrote “My Mother’s Apprentice: An Autistic’s Rites of Passage,” where he will talk about being raised by a single mother. His journey as a child with autism is one of the many reasons he received the 2022 Autism Spectrum Award from Els for Autism. My Co-Host, Dr. Nate Shanok, will also discuss a study that measures the impact of mothers on children with autism.