This is a post by Kimberlee Rutan McCafferty, mother to two sons on the autism spectrum and an Autism Family Partner at the Children’s Hospital of Philadelphia (CHOP). Kim is also the author of a blog about her two children with autism at autismmommytherapist.wordpress.com.
Eleven years ago, my eldest son Justin was diagnosed with moderate to severe autism. At the time I didn’t know any other families with autistic children other than the ones I’d had in my homeroom as a teacher, and those children were much older than my son. I didn’t know who to turn to for help in supplementing the scant eight hours of services Justin was receiving each month from Virginia’s Early Intervention.
I had so many questions regarding the gluten-free diet, yet didn’t know whom to ask for advice. I knew I needed a place to vent, but wasn’t sure I’d find a support group to fit into, as several had turned me away because my son was not high-functioning. Even months after Justin’s developmental pediatrician told us the news, I was still scared at what the future held, overwhelmed, and alone.
It finally hit me one day that I used to be someone who helped others, but now for my son’s sake I needed to ask for help. Fortunately I turned to the autism community, and found a wealth of support, advice and resources.
Sometimes, the people I met even provided me with a much needed laugh (and wine.)
The autism community both online and in your “own backyard” can be instrumental in helping you surmount challenges, in giving you ideas, and in being a place where you can feel surrounded by people who “get it.” Here are some of my favorite ways to integrate into the community, because we all need a place where we feel we belong:
- If you’re fortunate enough to live in a state which provides ample Early Intervention therapy hours for your child, reach out to your child’s therapists with any questions you have. I have two children on the spectrum, and their therapists have given me suggestions on developmental pediatricians, support groups, and much more. I often asked them to question their other clients for me regarding resources, and in doing so they provided me with a wealth of information. I found that even if they couldn’t answer my question, they knew who to ask.
- If you’re looking for Applied Behavioral Analysis (ABA) providers for your child, try your local colleges or universities. Talk to the secretaries in the education department and ask if you can put up a flier, or have the professors mention the opportunity to their students. We acquired several of our therapists that way, and it was a win-win for all of us.
- If you’re just beginning your journey with autism ask your Early Intervention coordinator about programs, services, and camps. We found out about several local autism organizations that way, as well as about a number of camps that turned out to be wonderful for our son.
- If your child is already in school join your local SEPTA, or Special Education PTA. The parents in mine have been extremely helpful, plus they’ve provided an important sounding board for me over the years (and I’ve made friends!)
- Check out the Autism Speaks website and Facebook page. Just their tool kits alone have helped me overcome many challenges with my kids both at home and in the community.
- Reach out to different autism organizations and attend as many workshops as you can. Many are free, and along with the information provided you might make some great contacts.
- Join a local support group. Reach out to local autism organizations and even to your child’s doctors to find one. They can be a great place (if the fit is right) to vent, celebrate your child’s accomplishments, and learn.
- If you are looking for a social skills group for your child, try nearby psychologists and psychiatrists as well as local hospitals for suggestions.
- If your child is still young ask your Early Intervention providers if they can recommend other moms with autistic children to whom they’ve delivered services in the past. I’m still friends with many of my kids’ providers (we spent so much time together after all,) and I’ve helped out a few parents over the years. I also met a few wonderful moms who were farther along than I was who turned out to be a great help.
- You will undoubtedly have a number of people try to “set you up” with other autism parents, and I used to roll my eyes at times at peoples’ matchmaking. However, one of my dearest “autism mommy friends” is from my son’s hairdresser who wouldn’t let me leave her establishment until I’d spoken on the phone to her client. You just never know!