I am blessed to have a wonderful mother that is not only supportive in words, but also in her actions. She has made autism more bearable by helping me in exactly the way I need it. When I need her, she comes running.....especially if it has to do with Lizzie. Mom, you really are the "wind beneath my wings".....even if you had to wait almost 38 years to hear it! Thanks Mom. I love you.
See Me Beautiful…..A Grandmother’s Journey with Autism
By Marilyn Statler
The piercing scream had heads turning in the McDonalds play area. The beautiful little girl with the huge brown eyes and brown curls was standing in the middle of the area screaming at the top of her lungs. She didn’t appear to be hurt or even unhappy—she was just screaming.
My heart stopped. I knew at that moment that something was terribly wrong with my precious granddaughter, Lizzie.
Lizzie’s birth in 2002 was a cause for rejoicing—our first granddaughter! She was healthy, beautiful and a welcome addition to our family. The first year she seemed to develop normally—lots of babbling, eye contact and happy smiles. Although she had an unusually high number of ear infections that were treated with antibiotics, we weren’t concerned. All kids get ear infections, right? And she had high fevers after some of her immunizations.
On her first birthday, we all remarked how sober Lizzie was, even when presented with new toys and birthday cake. Her nose was runny and gunky—maybe she wasn’t feeling well. Every photo we have from that day shows an unsmiling little girl in a pretty pink dress and birthday crown.
Julie commented many times how “easy” Liz was compared to her high maintenance older brother. Lizzie would sit by herself babbling nonsensical words and turning pages over and over again in her favorite book.
Julie suspected something was wrong when Lizzie stopped babbling, didn’t look up when her name was called and seemed to retreat in her own world. We all thought that she was just a quiet little girl—yet, in retrospect, the screaming in McDonalds may have been a cry for help.
Take-charge-Julie decided not to accept the well-meaning advice,” she’ll outgrow it,” and called ECI for a speech evaluation. A few months later, a pediatric neurologist diagnosed Lizzie with “moderate autism.” Our world crashed.
Autism was not even in my vocabulary. I remember reading something years ago about autism being caused by “refrigerator moms,’ but Julie was a loving and caring mother. Autistic kids were put in state homes for the mentally retarded—was this Lizzie’s future? While I grieved, I can only imagine the immense heartbreak, guilt and fear that Julie and Greg must have felt. Life would never be the same.
My grieving was not helping Lizzie or Julie—Julie needed help and she needed it NOW. Julie didn’t have time to do research so I immediately volunteered and got online. There was a wealth of information as government statistics said that 1 in 166 children would be diagnosed with autism (the number now is 1 in 99). I checked out books from the library, spent hours at Barnes and Nobles (love those comfortable chairs and Starbucks), and wrote Mom’s Cliff Notes, condensed versions of my research for Julie to read.
I learned about ABA, Floortime, OT, sensory issues, homeopathic remedies, a leaky gut, Thirmersol, gluten-free/dairy-free foods, play therapy, etc. And I suddenly had more compassion and empathy for families with special needs children.
As a “hands-on Grandma,” I attended meetings with Julie, did Floortime with Liz and sat with the boys while Julie took Liz to therapy. My husband and I spent several long week-ends taking care of the kids so Julie and Greg could have some “time-off” from Autism (though I doubt that happened).
Through the ensuing years, Julie was tenacious in finding the right therapy, the right nutrition. and the right school setting for Lizzie, while at the same time fighting insurance companies, moving twice and taking care of her other two kids, including one with severe food allergies. Talk about a Super Mom!
If you read Julie’s blog, you know some of the poignant and even funny stories of the Hornok family’s Life with Autism and how well Lizzie is progressing.
In my research I came across “See Me Beautiful” lyrics by Red Grammer, which describes Lizzie…and ALL those with special needs:
See me beautiful, look for the best in me
It’s what I really am, and all I want to be
It may take some time
It may be hard to find
But see me beautiful.
See me beautiful, each and every day
Could you take a chance? Could you find a way?
To see me shining through
In everything I do
And see me beautiful.
I see Lizzie beautiful and always have—she is my granddaughter and I love her. I know God has a special plan and purpose for her life, and I am honored to be a small part of that plan.
Marilyn Statler has been happily married for 43 years. She is the proud mother of 3 grown children and has 9 grandchildren. Spending time with her grandchildren is her greatest passion.