Frontline Initiative Autism Spectrum Disorder
My experience parenting autism:
A journey of challenges and joys
I can count on one hand all the words my daughter spoke before her third birthday. She never called us Mommy and Daddy and we generally referred to her as ‘wild’. We often compared our situation to wanting a cat but instead going out and trapping a raccoon.
When doctors confirmed her diagnosis, I remember crying for several days. I felt as if she had died. A parent’s dream of a future for her child was crushed by a simple word: autism.
June was a healthy and strong little red head born just one month premature. When June wasn’t sleeping, she was crying. She almost never slept. June completely stopped looking at us when she was around 18 months old. She jumped off the back of the couch, climbed bookcases, and spun. We were in the emergency room for head injuries more times than I’d like to remember.
June loved to watch cartoon shows over and over again and also had a quick temper. She threw uncontrollable fits that sometimes lasted for hours. There are times I had to sit on her so she wouldn’t hurt herself.
Tensions were always high. My husband and I fought a great deal and were at our wits end. We were tired and confused. We thought we were winners of ‘The Worst Parents Ever’ award.
When June qualified for state services at age two and a half, I ran out to the nearest bookstore and purchased a book on speech delays. It was while reading this book that I found that June was possibly on the autism spectrum. I also learned there was a diet that worked for about half of the people who tried it.
My husband and I felt a wave of relief that we weren’t the terrible parents we thought we were we might actually be able to help our daughter. We were afraid to medicate her at such a young age so we decided to try the gluten and dairy free diet*. June began to make eye contact with us within a month or two. It was as if a fog had cleared away and she could finally see us!
June still didn’t have any spoken words, but she began using some sign language that she had learned from watching Baby Einstein videos. We quickly graduated her to using the Picture Communication System (PECS). Before we knew it, the words started to come. Today as I write this, she talks to me endlessly.
It has been a long road these past 7 years. When we first received June’s autism diagnosis, we were very afraid. We felt sad, lost and helpless. We were scared. We didn’t know anything about autism outside of the movie Rain Man.
We are thankful for every therapy June has received. One of June’s Early Intervention therapists, Rebecca, asked me to participate in June’s sessions. Rebecca taught me how to carry over activities from the therapy session to our everyday life. I felt like I was an important part of June’s program.
It is critical to include any willing family members in a person’s support program. This simple step can help change parents’ feelings of helplessness into feelings of empowerment and optimism of a successful future for their child.
June will always face challenges. She has heightened auditory and visual senses that sometimes interfere with her ability to focus in her environment. She occasionally wears a weighted vest to help her with those challenges. June is emotionally and socially behind her peers right now but her academics are two grades above and she is catching up socially.
June makes amazing progress with each passing year. We have worked hard to ensure a happy future for her. We hope she goes to college and possibly even gets married and has a family of her own someday. We are proud of June.
To our family, autism is just another word. It has its challenges but it does not mean the end of a dream.
*FI Editorial Note: Dietary changes are one approach to autism treatment. Specialized diets do not have the scientific support needed for widespread recommendation. Changes in diet might help one person with autism, but may not help another.