I’m a joiner – always have been. Hello, my name is Megan and I’ve attended AA, OA, Al-Anon, Weight Watchers, The Artist’s Way meetings and Co-Dependents Anonymous. (Did you even know that was a thing? It is.)
I’ve spent hours in drafty Kiwanis clubs and musty church basements, sitting on metal folding chairs and nodding my head solemnly as someone shares their deepest truths. I don’t even drink coffee, but I love the smell of it brewing in large metal urns. The display of Chips Ahoy cookies or Entenmann’s doughnuts at the folding table knows me well.
Over the years, these meetings have made me feel less alone. They’ve given me a much-needed break from the incessant mental chatter that dominates my waking hours. For the 60 to 90 minutes I’m there, I’m able to access compassion and understanding – for myself and others. I leave with a feeling that can only be described as relief, fleeting though it may be.
I’ve sought out support groups for pretty much every difficulty I’ve faced in my adult life. So, when my son, Tyler, was diagnosed with autism at the age of 5, I quickly Googled groups and found one that meets at an IHOP once a month. Perfect. Helpful advice from strangers and fluffy, golden pancakes? Yes, please!
As I entered the IHOP meeting room, a young, heavy-set man greeted me. I was struck by his firm handshake and the intensity of his gaze.
“Hello. I’m Benjamin. Welcome.”
“Thanks, Benjamin. I’m Megan. Nice to meet you.”
“Is this your first meeting?”
“Uh huh.”
“When were you diagnosed?”
Wait. What?
I looked around and noticed small groups of teens and young adults chatting at tables and booths. I turned back to Benjamin. “Is this the Asperger’s support group meeting?” I asked.
“Yes, we meet once a month and practice our small talk and social skills.”
“Oooooh, ummm, I don’t have Asperger’s. I’m here for my son.”
Benjamin nodded and directed me to a nice middle-aged woman wearing mom jeans and a burgundy blazer, who informed me that this was a support group for young adults with Asperger’s. She told me that I needed to find a group for parents of young children with autism.
Whoops. Wrong turn.
TRIAL AND ERROR
Finding the right support group can feel a lot like dating. You try on numerous outfits before you leave the house. All of a sudden, you don’t know what to do with your hands.
Dating is relatively low stakes. But when you have a child with a disability, the stakes for finding a support group couldn’t be higher. It can mean the difference between community and isolation. Isolation breeds shame, and shame is dangerous.
Having a child with a disability can make you feel like things are out of control and it’s all your fault. It can lead to problems with your spouse or partner, contribute to substance-abuse issues and provoke rage. Finding others in the same boat can help counteract these feelings.
“We are designed to be social beings,” says family therapist Chris Ioimo, director and supervisor for Journeys Counseling South Bay. “Being vulnerable is never easy, but sharing life and coregulating our emotions and knowing you are not alone can make all the difference. So be willing to try on a few groups to see which feels or fits best.”
You may feel uncomfortable at first, but your people are out there. And there’s only one way to find them.
JUST SHOW UP
One thing that has always served me well is a willingness to show up. I often have no idea what to do once I’ve arrived, but I’ve learned that the universe will take it from there. After the IHOP experience, I went back to my best friend Google and found Families for Effective Autism Treatment (FEAT), which meets monthly at the Kiwanis Club in Hermosa Beach.
I arrived at 6:55 p.m. for the 7 p.m. meeting. There were no cars in the parking lot and the front door was padlocked.
My heart dropped, tears welled in my eyes. Those early days – when we had a diagnosis but no idea what to do – were so raw and vulnerable. I constantly teetered on the brink of despair. My thoughts veered from, This meeting will be it, I will find what I am looking for, my son will be saved, to the emptiness of, Nobody’s here, I’m a failure and my son is doomed.
Then a woman wearing yoga pants unlocked the door. She was friendly and had kind eyes. She ushered me in and explained, “We don’t have a speaker today, but we’ll sit in small groups and talk about any issues we are currently having.”
Good. If there’s one thing I’ve got, it’s issues.
That first FEAT meeting set me on the right path. I heard vital information from parents who had walked this road before me. I left with a list of doctors, therapies and connections.
One important thing to note in your support-group search is that they have different personalities. Not all support groups are created equal. Some encourage members to sit in a circle and open up about their fears. Other groups invite experts to speak about a particular topic and give parents much-needed advice on therapies, doctors and Individualized Education Plans. Most groups do a little of both.
THE INFO-ONLY PATH
With autism, early intervention is the key to the best possible outcomes. When Maria Crawford’s son, Zane, was diagnosed at 18 months old, she didn’t want a pour-your-heart-out support group. The Redondo Beach mom wanted information, and she wanted it fast.
“Zane was an awesome baby. He met all his physical milestones,” Crawford says. “But there was always something a little off with him.” She realized what it was after watching a video of a boy with autism exhibiting the same quirky behaviors that Zane did. “That night I broke down, cried and grieved the loss of Zane,” says Crawford. “By the time he was officially diagnosed four months later, I had accepted the diagnosis. I didn’t have time to waste. I wanted to know what worked and get started right away.”
Crawford immersed herself in the data and shadowed families who already had services in place. She also attended a conference at which a panel of parents spoke about their experiences with Applied Behavioral Analysis, or ABA, a method of therapy used to improve or change specific behaviors. “Hearing those stories of recovery and success gave me hope,” Crawford says. “I made some real decisions at that conference.”
She became fluent in ABA, which led her to FEAT. As her son grew and continued meeting his milestones and social goals, Crawford spent less time in crisis mode. She became the president of FEAT as a way to give back to the organization that had given her so much, and now serves as a board member.
“We arm parents with the facts and give them right strategies to help improve their kids’ lives,” Crawford says, noting that not every parent is open to this. “I often get frustrated because some parents want a quick-and-easy solution and it’s not like that with autism.”
A SAFE PLACE TO SHARE
Rancho Palos Verdes mom Jessica Patay has a 14-year-old son with Prader-Willi syndrome (PWS), a rare and complex genetic condition. At some point between ages 4 and 6, kids with PWS experience extreme anxiety coupled with an insatiable appetite that can cause life-threatening obesity. They have low muscle tone, developmental delays and must be watched constantly.
“When Ryan was 2 months old, we went to the Prader-Willi California Foundation,” Patay says. “We were scared. We met people that were so warm, so friendly and so caring – people that we actually felt a connection with. We were so relieved. They are still our friends to this day.”
Patay knows firsthand how hard it is for parents of children with disabilities to show up. “You’re isolated because your schedule is filled with appointments, therapy, conferences and trainings,” she says. “Some moms are literally stuck at home and it’s too hard to go to parties or even your other kids’ sporting events. Then there’s the subconscious part of isolation: the cyclical grief, the expectations unmet. We almost need to make peace with it in order for it to lose its power over us. If we get stuck in the what-ifs, and compare ourselves to Pinterest, it perpetuates that feeling.”
Ioimo agrees that having a child with disabilities can bring about many challenges and negative emotions, and says finding community can make a huge difference. “Seeing that someone understands the challenge and is either farther along, just beginning or at the exact same place as you can create the space needed for us to grow and care for each other along the way,” he says.
Based on her experiences, Patay founded We Are Brave Together (WABT), a support group for moms of children with all kinds of disabilities. “I’ve always had a passion for the friendship of women. That passion collided with the burden of knowing the journey of special-needs moms,” she says. “I’d experienced the Prader-Willi support group and didn’t feel like there was a need to focus on one disease and one disorder. It was important to hear each other’s stories, be exposed to each other’s daily lives and learn about other diseases and diagnoses.”
Instead of meeting in hotel ballrooms or chain pancake restaurants, WABT gathers monthly at different members’ houses – from South Orange County to Palos Verdes. “Some support groups meet in uninviting locations. I really care about atmosphere,” says Patay. “I want moms to walk in and go ‘ahhhh’ and not feel a sterile environment. Good food, flowers, balloons, decor – a feel-good thing.”
While FEAT is all about autism, WABT is about the moms, not the kids. “It’s not a group to learn how to help your kid, even though you will get some of that,” Patay says. “It’s about empowering the moms. It’s information and inspiration. It’s a place where you’re understood, your story matters, you can say anything and not be judged. That is my hope.”
THE GIFT OF PERSPECTIVE
Before I left that first IHOP meeting years ago, I looked back at all those young people pushing past their awkwardness, trying to connect. I thought, Maybe I’ll bring Tyler here in 10 years to practice his social skills. It felt like a wrong turn at the time, but now it feels like a helpful tool I might need down the road.
Nothing is ever wasted.
That meeting led me to FEAT, which led me to WABT. Both have played important roles in my quest to provide my son and myself with the support we need to navigate autism.
Parenting is hard. Parenting a child with a disability is even harder. Whether they’re data- or emotion-based, meeting in a ballroom or a basement, there are no right or wrong support groups. When you’re willing to show up and willing to learn, they’ll give you what you need, when you need it.
Megan Dolan lives in Long Beach with her husband, son, daughter and nine tropical fish. Her solo show, “Lemur Mom (because we can’t all be Tiger Moms)” is playing at the Whitefire Theater in Sherman Oaks through June 2.
