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.

In the spring of 1993, like a good mother, I began creating my baby daughter Kelene’s photo book. I purchased colorful paper, stickers and stamps to decorate the blank pages. I pasted in her newborn photo, where she smiles so much her nose squinches and her chubby arm hugs her stuffed Lamb Chop doll. I saved a lock of her curly hair from her first haircut, with plans to put it in the book on its own page.

Within 15 months, I had my second child, a baby boy, and only 15 months after him, I had twin boys, one of whom was soon diagnosed with autism. In four years, my husband and I went from thinking about what our first child would look like to being surrounded with four little people who had starkly different needs. The needs of Marcus, the twin with autism, swallowed up the lion’s share of my attention and time. Marcus is nonverbal and requires constant supervision.

I never finished the memory book project I had so carefully started for my first daughter. For years, the parts of the book I had not put together stayed in a Walmart bag, stashed in the promise-to-get-to-soon corner of my closet. I have never asked my daughter whether she felt slighted over not having a baby book. I have never asked her how seeing images of her earliest days of life encapsulated in a carefully crafted album might have shaped her self-worth.

I did not ask many questions of my other children in those days of raising Marcus, especially not questions about their well-being as they lived side-by-side with him. My focus on Marcus was required to prevent incidents as benign as him stealing pizza from someone’s plate at Chuck E. Cheese, or as serious as him running full-speed into traffic. The interventions were frequent, many were critical, and they did not allow me the luxury of giving equal attention to my other three children.

Still, my other three children were there, and they deserved more. What can parents in similar situations do? Plenty. And a host of clubs and workshops for siblings of children with disabilities are vibrant across L.A. County, providing a place where these kids can be the focus of all the attention and support.

Talking About Feelings

The sibshops at McRory Pediatric Services, Inc. in Tarzana serve children ages 4 to 12 and meet once a week in six-week cycles. Family counselor Jenny Pendleton facilitates the groups and combines play with therapy. “I play a wheel-of-feeling bean bag game,” she says. “The bag lands on a feeling, like ‘disappointed.’ The child then shares about a time when she felt this way.” It’s the type of activity that helps siblings feel seen.

Pendleton says parents of children with disabilities have no intention of ignoring their other children. But when parents are focused on taking a child with challenges to various appointments and therapies, siblings can feel pushed aside. “Their interests are left out,” she says.

My son Nathan, Marcus’ twin, expressed these types of feelings. “I began to distance myself from family when Marcus’ behavior became aggressive and when you guys started calling the paramedics and it seemed like he was not getting better, but worse,” he says. “I felt isolated then.”

My husband, Wes, whose sister has a physical disability, says a sibshop might have helped him feel less alone, less alienated. “I saw things as unfair toward me, but no one talked about it, and I felt I couldn’t talk about it, either,” he says. “I think I would have had less insecurity and felt like I belonged.”

Talking About Challenges

Sibling programs also help typically abled siblings learn about their siblings’ diagnoses and the particular challenges they face. These conversations can help families create a more inclusive environment at home.

Club 21 Learning and Resource Center in Pasadena serves individuals from birth to age 24 with Down syndrome and their parents, along with continued support for siblings. Teaching siblings to appreciate each other’s differences is an important part of Club 21’s sibshops program for ages 8-12. “The overall feeling of children who attend our sibshops program is, they all feel like they have been heard and understood,” says Laura Schoonover Stoner, executive assistant at Club 21. “When they are together, they feel known in their deep love, protection, concern and advocacy for their sibling.”

Emma Lee, a high school junior from Irvine, has a sister, Abby, who was born without irises in her eyes, a condition called aniridia. Emma says she often forgets about the struggles and surgeries her smart, talented sister, who is a high school senior, has had to endure. She forgets how Abby, who is quiet and reserved, might feel alienated socially and advises parents to communicate with their children about the lives of their siblings with disabilities. “Try your best to have in-depth conversations about what the differently abled sibling is going through,” Lee says. 

Space to Play

One strategy sibling programs use to create a welcoming environment for siblings of children with disabilities is to give them space to play. Professional Child Development Associates in Pasadena hosts Sibling Saturdays for children ages 5-12 who have siblings with developmental disabilities. “Making food, making Play-Doh from scratch, scavenger hunts, tag and pretend play” are among the activities offered, says Amanda Calderon, who supervises the program.

My husband recalls that because his sister’s mobility was restricted, he felt restricted also. A sibling workshop such as the one at PCDA can offer children with similar frustrations a sense of freedom to be themselves.

Play is also front and center at The Sibling Club at Harbor Regional Center in Torrance, with monthly gatherings for various age groups. Maria Elena Walsh, who helps facilitate the Sibling Club and is assistant manager of the resource and assistive technology center there, says the idea is to keep siblings from feeling lost in the shuffle. “We want them to not feel alone,” she says. “We let our clients know they have similarities and differences. That usually sparks conversation. When our clients play, we want them to feel safe and know that it is a confidential place.”

Support at Home

My daughter’s unfinished baby book and the ballet lessons I could not give her because of time and energy too often diverted to support her brother still cause me heartache. A sibling program might have helped fill the gap. Experts from these programs also suggest strategies parents can do at home to navigate the complexities of showering all of the children in their households with love and attention.

Start by knowing your children well. “Know each child’s individual differences,” says Amanda Doma, a PCDA program supervisor. “Your child with disabilities will have their own specific needs, interests and challenges; as well as your typical child.”

It can be truly helpful to find someplace where your typical child can connect with other families who have a child with the same disability, such as an advocacy organization connected to that disability, or a sibling program. “Finding your community is key, and normalizing that they are a part of a bigger family other than their nuclear family,” says Stoner. Pendleton advises parents not to expect siblings to always include siblings with disabilities in all of their activities.

It is also important for parents to pay attention to and nurture the talents of all siblings. “At the appropriate time, communicate how some of the skills of living with a person with a disability gives skills that they will use the rest of their lives,” says Stoner, “that your family shapes you and gives you gifts and talents that will shape them in careers and relationships.”

Along with strengths, discuss the challenges posed by a disability. “When appropriate, it is helpful to discuss with your typical child what are some of their sibling’s challenges and strengths, so they are aware of how their sibling with a disability needs to be supported and how they can support as a brother or sister,” Doma says.

Pendleton recommends dedicating certain times – perhaps a movie date or bedtime – to spend with your typical child and using some of that time to discuss feelings, including any anger or resentment your child feels. Share your own feelings as well. But also carve out dedicated family time. “Provide time and space to do pleasurable activities as a family, where both children can interact,” says Doma, “even if it is through sharing the same space and engaging in parallel play or going out somewhere as family that both children will enjoy.”

The message you want to send to all your children, through your activities as a family and the time you dedicate to them individually, is that everyone is of value and needs support.

Darlene Kriesel, a Southern California-based writer and educator, holds an MFA in creative writing from UC Riverside-Palm Desert. She writes on education, social justice and the family.