The people, places and experiences that have formed the puzzle pieces of my life
In Support of Support Groups
March 22, 2015
When John Matthew was diagnosed with autism at the age of 4 1/2 years, the neurologist who diagnosed him basically told me, "Your son has Asperger's Syndrome. He'll probably need special education. Have a nice day." Before that day, I had never even heard of the word autism. I knew of noone who had a child with autism. I had no idea on how to help my son with his autism. One vivid memory that still haunts me from that time in my life was how incredibly terrified and alone I felt.
In my initial panic mode, I remember looking in the phone book and contacting virtually every nonprofit organization listed, including the March of Dimes, to see if they could help me to understand this disability. Finally, after spending way too many weeks crying, telephoning, and then reading anything I could find on autism, my family met with a psychiatrist who confirmed the autism diagnosis and recommended a local psychologist. This referral finally set off a domino effect in finding John Matthew the proper services.
Soon thereafter our days and weeks were filled with nonstop appointments for social skills development, occupational therapy and speech therapy. While the parents of typical five and six year olds were busily carpooling their children to Little League sports games, I was exhaustively driving John Matthew across town to his many therapy appointments. It was during these appointments though that i began to experience something truly magical. As I sat week after week beside other moms who were going through similar experiences, I started to realize the immense satisfaction that came from sharing information and stories. The realization that I wasn't alone in this journey was truly empowering.
About a year into John Matthew's diagnosis, I met a wonderful mom named Danielle Wendel. Her daughter Mattie and John Matthew attended weekly social skills group sessions at a local psychologist's office -- the first and only group of its kind in Las Vegas. Our friendship grew stronger with each passing week, and we soon found ourselves even traveling out of town together to attend autism workshops. We also discovered a local autism support group called FEAT of Southern Nevada.
Although this support group provided us with much needed information, at that time they mostly focused on families whose children were more severely affected by autism and who needed more intense therapies than Mattie and John Matthew. However, the satisfaction of sharing resources and stories with other parents made us realize the benefits of being part of a support group.
It was at this time when Danielle and I looked at each other and said, "we need to start a support group for families of children with Asperger's Syndrome." Our first meeting took place in September 2002 inside of the FEAT building. The small room was filled to capacity with families whose thirst for knowledge, solutions and support was as intense as mine and Danielle's.
Shortly after our initial support group meeting, we moved into a larger space in Summerlin Hospital and later at an NV Energy conference room where we held monthly, 2-hour support group meetings. Our attendance grew consistently and included parents, adults with Asperger's Syndrome, and educators. Over the years we held "meet the professionals" nights and invited panels of local autism professionals to speak about their respective services, distribute their brochures, and even set up appointments.
Because we knew how very difficult it was for parents to travel out of town to attend autism-related workshops, we worked with autism publishing companies to bring their authors and speakers like Dr. Tony Attwood and Temple Grandin to Las Vegas. Our support group efforts soon expanded into developing a website and e-mail list, holding yearly carnival-themed picnics, organizing play groups, and answering daily telephone calls from desperate parents who, like us, just wanted someone with whom to talk.
The Asperger's Syndrome/High Functioning Autism Support Group was borne out of a need to get together with people who "totally understood" the challenges and triumphs involved in having a child with autism. During its run from 2002 through 2014, I was truly blessed to get to know and work with some of the most courageous moms, dads, children, educators and professionals in our community. Any effort that I expended into running this support group has come back to benefit me and my family more than100-fold. It has been one of the most rewarding experiences of my life.