The Full Spectrum: I’m A Support Group Dropout
The Full Spectrum focuses on the trials and tribulations of raising a child who ranks on the autism spectrum.
Readers of this column will remember that one of my big goals when my oldest son S. was diagnosed with Aspergers was to connect with other moms and families with kids on the spectrum. Everything felt so overwhelming to me and I really needed other people to share with and help guide me.
My best friend, whose son is anaphylactic, had been running a fantastic education group for parents of kids with allergies for years and she strongly encouraged me to find or start a support group to get the connections I was looking for. The problem was that after searching for a year or so I hadn’t found anything for parents of kids on the spectrum and looking for a group was starting to feel like another full-time job.
Just when I stopped searching a support group fell in my lap. It was a social skills group for S. that included a parent education group at the same time. Jackpot!
In retrospect, I should have known that some things really do sound too good to be true.
The program was held at a psychiatric hospital and on our first night there we got lost, wound up in the emergency room and although I am extremely sympathetic to the challenges of mental illness this was really scary stuff . The room was packed with people in crisis as well as some police officers and the odd person strapped to a stretcher. Luckily S. was oblivious to the unusual surroundings and was happily skipping along the padded hallways (okay, that is an exaggeration, but I’m trying to paint a picture here).
After we found the waiting room for the group we were instantly greeted by a teenage girl from the program who was very sweet but who spoke extremely loudly right in our faces (no exaggeration here: she was literally right in my face!) about who she was, where we needed to go, how many times she had done this group and more. All without taking a breath or showing any real interest in us.
The waiting room was filled with a whole bunch of kids who were playing video games, negotiating video game time with their parents or watching the other kids play video games. What really struck me in the first moments were the older kids – teenagers who didn’t seem much different than S. or any of the other younger children. This was shocking to me. As S. is still only eight years old, his behaviors are not totally off the spectrum (no pun intended) of what is normal for his age.
Seeing teens behave in many of the same ways as S. was really dramatic and a little scary to me. I hadn’t ever really envisioned what Aspergers would actually look like on an older kid and I realized that the challenges can increase with age. My anxiety level rose as the waiting room got more crowded and I had to fight the urge to bolt (I made a meeting place with my husband just in case the urge got too strong).
I relaxed a bit once we were alone with the adults but the whole thing just seemed surreal. They say Aspergers is genetically linked, so you have to imagine that a family support group is going to have its own cast of characters and this group did not disappoint. Part of the awkwardness was that many of our kids were newly diagnosed and it felt strange to share intimately with strangers. But there was something more going on. The group never seemed to get into a rhythm. Only two topics seemed to break the awkward silences between guest speakers and instructions about filling out forms: the challenges of public school and bullying. Neither of these was an issue for us and after three or four discussions it was hard to feign interest. It didn’t help that the clinical boardroom we convened in was constantly boiling hot and the chairs were designed to drive a person crazy.
I started to dread Wednesday nights (which ironically had been our date night for six years before joining this group) and would offer to drop off S. and my husband at the front door so I could “look for parking,” which meant arriving 15 to 20 minutes late. One week we got trapped in the basement (not to stereotype but the basement was seriously One Flew over the Cuckoo’s Nest) with a motley crew of families from the program and a few inpatients. I was asked to wait in the stairwell while everyone else was ushered up to safety and sitting alone in the depths of the “institution,” I finally cracked. My husband generously offered to finish up the final sessions while I sat at home feeling guilty and totally lame about being a support group quitter.
They say it takes a few times of trying to actually quit something and maybe that is the reason why I signed us up again for the next session. I couldn’t find another group therapy for S. and I felt like my discomfort was a selfish reason for not doing something beneficial for my child. This time we went in with a sense of humor and zero expectations – but that didn’t help the situation. We did meet some nice people but I was done for good. I was a support group dropout.