One of my son’s former teachers recently posted on Facebook, “Why can’t I find a local ASD support group for parents? HELP!”
I answered, “Didn’t you know that parents of kids with ASD are too overwhelmed at home to organize a support group?”
To Tired To Network?
Parenting a child with special needs can be isolating and frustrating work on some days. Sometimes I am so focused on meeting my son’s needs that I don’t have much contact with other adults. I’m usually so tired at the end of the day that I don’t even want contact with other adults. But that also means I don’t have anyone other than my equally exhausted husband with whom to share my daily triumphs and catastrophes. The companionship of other parents who are walking the same walk relieves my isolation and frustration, inspires my creativity and helps me become a better parent.
What about support groups?
It’s not easy to find a good fit with a support group. Each group has unique goals and interpersonal dynamics. Some groups are specific to a medical diagnosis such as hydrocephalus or Down Syndrome. Other groups work toward better communication with school administration, or provide information about medical or therapeutic options.
Here’s a breakdown of different types of support groups for parents of children with special needs:
1. Schools, Local Non-Profits & Children’s Hospitals
Start with your child’s school, non-profit organizations and local children’s hospitals (Example here). These groups may meet monthly all year round, or once a week for six weeks, usually in the evening. Some groups are led by a facilitator, some groups have a guest speaker followed by a discussion period. The only way to find out when and where is to call or e-mail for details.
2. Create your own support group
Consider rounding up a few acquaintances for an informal support group. I used to go to a “Ladies’ Night Out” for female caregivers of children with disabilities, held monthly at Applebee’s. One time I sat next to a woman who drove 90 miles for the Ladies’ Night Out, and the stories she told revealed how much she truly needed moral support. The conversation was always lively and went off in diverse directions.
The woman who organized it was extroverted and had an infectious positive attitude; she herself had a child with multiple diagnoses, and she clearly enjoyed meeting other parents in the special needs community. Her vivacious personality was the key to the group’s success: when she moved out of state, I tried to continue the group, but my bookish, introverted personality meant that no one else showed up!
3. Impromptu Support Groups
The waiting room at the therapy clinic or adapted recreational facility (like the Friendship Circle) often turns into an impromptu support group. Small talk quickly turns into something deeper in those circumstances – don’t be afraid to strike up a conversation.
4. Go Online
Online support groups can be a lifeline for those of us who are needed at home 24/7 with very little time alone. My Aunt Sally, who has an adult son with disabilities, told me that she has seen the internet transform the disability community. Facebook and Twitter make it especially easy to find other parents quickly, just by typing in a few keywords related to a disability.
There are some disadvantages to online groups. Plenty of inaccurate information is shared. Plenty of unwelcome opinions are shared, too. But most of the time, I’ve found interesting ideas to research, and I’ve been uplifted by the experiences of other parents in my situation.
For me, the biggest benefit of online support groups has been learning about the perspective of adults with disabilities. They can explain what helped them when they were children, what they struggle with day-to-day as adults and how they solve real-life problems.
5. Support By Phone
Phone support groups offer the comfort of other human voices with flexibility of time and place. These groups are usually led for a fee by a psychologist or holistic healer (Example Here), and they work well for people who want to work as a group toward a specific goal of acceptance, self-empowerment or stress relief.
6. Parent Advisory Councils
A special education parent-teacher association (PTA) or parent advisory council for special and medical needs can act as a liaison between parents and school administrators, and assist with collaboration between the two parties. This type of group is perfect for those who are well-organized or activists who want to improve their school community.
How support groups can effect policy
Last week I attended the school board’s committee meeting on food allergy policy — with my peanut-allergic 4 year old on my lap. Many of the parents at the meeting were agitated and emotional, and the school district representatives became impatient, as the meeting kept veering off on tangents and individual anecdotes. My child was behaving better than some of the adults!
It occurred to me that the parents in the room had not been able to form a collective plan before the meeting because we had no way to reach out to one another — privacy laws keep parents of students with medical needs separated from each other. The meeting would have run much more smoothly if the parents had drafted a single statement signed by dozens of families.
Empowering Special Needs Parents
Shannon Des Roches Rosa writes about starting a special education PTA in her essay “How I Met Jennyalice” from the book My Baby Rides the Short Bus: “We realized that forming a special education PTA was the most straightforward way to empower parents like us and children like ours, to give us the power and knowledge to protect our kids from being trapped in inappropriate educational environments.
We also provide a support network for the other special needs families in our district…not that we embody altruism. We are avenging Furies when our children are mistreated or misperceived. My friend Elaine says that our PTA slogan should be ‘Where angry women come together.’ Thankfully the PTA gives us a way to channel our ire into socially acceptable good deeds and projects.”
I think that’s the objective of any support group for families of children with special needs: to absorb our bad days, our negative experiences, our headaches and sadness, and by doing so to renew our sense of purpose through fellowship.