Social media group unites ASD moms
By Sonia Duggan
Raising a child with autism without a strong support network can be very isolating for many parents. The symptoms, much like the spectrum of the disorder, can vary widely leaving some parents frustrated as they attempt to integrate and navigate a whole new world of therapies and programs to aid their children.
For over 100 Wylie moms of children with Autism Spectrum Disorder, a social network is providing community support and resources — and even new friends for many — as they journey through the trials and tribulations of parenthood.
The group’s founder, Jessica Green, launched Wylie ASD Moms in 2017, three years after learning about her daughter’s diagnosis. In the beginning Jessica said she didn’t know another soul with an autistic child. “It was really hard and very isolating, so I’m thinking I don’t know what I’m doing,” she said, adding, “I quickly realized other moms didn’t get it.”
Only one in four children diagnosed with autism are girls, and over a third of them are non-verbal. Jessica said her daughter Cooper was nonverbal until the age of four, which, for a period of time between the ages of 2-3 years old, often resulted in Cooper screaming in frustration because she could not communicate with her parents.
Because the disorder is on a spectrum, children often have similar traits, said Jessica, but they don’t all look the same. A small percentage have epilepsy, and in Cooper’s case, Jessica said hers is in the area of the brain that controls speech.
Cooper attended the preschool program for children with disabilities (PPCD) at Hartman Elementary from ages 3-5. During that time, Jessica said she began to think about the other moms dropping off their kids at school.
“Doesn’t this seem silly that I don’t know any of these people and we’re not connecting,” she said. “I’d pull into the parking lot and I’d see the same women week after week.”
Initially, Jessica started a generic special needs parent group on Facebook as a way to connect. She also let the school know so they could communicate it to anyone who wanted to participate.
“There was communication on the page for a while, then it became apparent to me that the moms who were really crying out for support and really needed it were the autism moms,” she said.
When planning the group, Jessica said she kept the guidelines pretty specific “just to have that close-knit community.”
“The important part for me was creating a community where I didn’t feel alone, my kid didn’t feel alone and then I didn’t want other people to feel the way I felt either,” Jessica said.
To be a member of the group, members must adhere to a policy of not sharing anything discussed within the group.
“A lot of (ASD) kids have a hard time potty training up until 9 and 10 years old,” she said. “People can post really private questions like that – and people offer help. The number one thing that the group has created is that safe place to ask those personal questions and people to answer them with no judgement.”
In the beginning, there were only 10 women in the group. One member, Shelly Cooper, recalled some of their first meetings at the Wylie Rec Center as just a Q&A discussion with smaller group of moms. Around the same time, Sharon Vigneau of Murphy discovered the group after Jessica posted about it in a larger DFW autism moms’ group.
“It was amazing to find someone that would understand what I was experiencing with our kids — the good and the bad,” she said.
The group has since grown to 108 members, and anywhere from 10-15 women routinely get together once a month for mom’s nights for dinner and the opportunity for ample face-to-face conversation. Jessica said while it can be incredibly intimidating to go out to dinner with a bunch of moms you don’t know, “the Wylie moms are the most welcoming, nonjudgmental (group) of all cultures and races. It’s a nice melting pot.”
The monthly nights out are a favorite of the moms.
“I really enjoy spending time with the moms, catching up on what’s happening with our families and meeting new moms that have joined the group,” Sharon said.
“The dinners are always fun,” says Shelly, “because not only can we share successes of our kiddos, but we get to enjoy each other’s company and just have fun with the girls.”
Like groups everywhere, Wylie ASD Moms has had virtual meetings due to COVID-19, but Jessica is trying to encourage moms to return to meeting in person.
Most moms work full time, said Jessica, who is the operations pastor at New Hope Church in Wylie. “It’s interesting to see how working moms juggle everything going on but still being present for their needs,” she said. “I think that’s the kind of thing that brings us together. It’s OK – you’re not alone.”
Wylie ASD moms, children and husbands benefit from the group. The moms get the support and friendships they need, the children make new friends, and the husbands are grateful their wives have the opportunity to fellowship with other ASD moms.
“My husband is glad when I can have a night out with the girls,” Shelly said. “He understands that he can’t always provide me with all the support I need, as much as he tries, so he is grateful for me to receive the support I need.”
Sharon said her husband thinks it is great to have this group of friends, adding, “He knows how much it has helped us, and he is grateful about it.”
The group is not closed to dads. Jessica says, dads are welcome and thinks they could benefit from the group as well.
“Dads don’t always share all their feelings in a group,” she said. “Moms need the emotional support more so.”
Autism is a complicated disorder that is often recognizable in young children by the time they reach their third birthdays. In Sharon’s case, her youngest son Ben was diagnosed at 2 ½ years old, and at the time she said she didn’t know much about autism. “Although our family and friends were supportive, we didn’t know anyone local that was going through the same thing we were.”
Her son Matthew, who is just one year older than Ben, was almost 8 years old before he was diagnosed.
“Just before going into kindergarten he was diagnosed with ADHD,” Sharon said. “Once the ADHD was under control, then we noticed some of the autistic (Asperger) characteristics.”
Participation in the group has been helpful, says Sharon. “Our group is a great source to find doctors, therapies, entertainment… you name it. The ladies have also been a great help with resources available at our schools.”
Because therapies are so beneficial for children with autism, it is a common topic among the Wylie group “ASD Moms,” says Jessica, but they can be “really, really expensive.”
Aquatic therapy, behavior therapy, occupational therapy, speech therapy, music therapy …“When you see all these potential things that could really help your child, it’s hard to be content with just sending your kid to school,” Jessica said.
Applied Behavior Analysis, also known as behavior therapy or ABA, is private therapy that can cost thousands of dollars a month. If insurance doesn’t cover it, Jessica said families can apply for $500 – $3,500 grants that can help cover the cost of some or all of the therapies. For that reason, she keeps a file in the group with the grant list for the moms.
“It’s been one of the best therapies we’ve ever done,” she said, calling ABA “a game changer.”
Shelly, a Garland ISD dyslexia therapist, has been a member of the group since her son Silas first began ABA four years ago.
“Finding this group of moms made me feel like I could breathe,” she said. “I didn’t have to be so uptight or on edge – they got what I was going through. We were able to share similar challenges, as well as triumphs of our “littles” that others might think are odd, or not a big thing at their age. It was refreshing.”
Because making friends is a common struggle for children with autism, the group has become a community where their children can all get to enjoy activities together. When the weather is nice, they will often meet up at a local park.
“It is great seeing our kids interacting and enjoying each other,” Sharon said. “The kids park dates are amazing because I love seeing my boy playing with his friends,” Shelly commented, adding that Silas has branched out and done more (activities) as a result of the community sharing those opportunities. “We’ve gone to sensory friendly painting days, Dallas Symphony Orchestra programs, carnivals, and many others.”
“Even if they don’t make any other friends, we have a group of moms and friends here, says Jessica. “They’ve come to my kid’s birthday parties and we’ve gone to their kids’ birthday parties, so it’s created this community.”
East Side ASD families
For ASD families seeking support who do not live within Wylie ISD, Heather McMullin of Garland is one of three admins who manages the private Facebook sister group called East Side ASD Moms.
The group has 303 members and is open to families with kids on the Autism spectrum in Garland, Sachse, Murphy, Rowlett, Rockwall and surrounding areas to connect, share and meet up in order to help support each other and their children.
“There’s a lot of moms out there in Rockwall and almost all the way up to Greenville that are way more isolated than us little East Side girls,” Heather said. “They need help and we’ve opened it up to even them. We have people traveling an hour to meet us.”
Jessica met Heather through another DFW moms group years ago. They both acknowledged there were moms outside Wylie that needed help and driving across the Metroplex is not an easy option.
“The Wylie Moms included us and that’s how the group began,” Heather said. “She (Jessica) couldn’t run two groups, plus do her job.”
Heather’s story about how her son Jamie received a received a late diagnosis at 8 years old is not all that different than some of the other moms, but most of all she remembers feeling isolated after the diagnosis.
“Where do you go, what do you do, who do you talk to? I had no clue,” she said. “That’s what a lot of us (in the group) were talking about – that we didn’t want any mom to feel like that.”
Like Jessica, Heather is a great resource for other moms needing support and information. She is an advocate of starting therapies (for ASD kids) as soon as possible, “because it will help in the long run and builds a stronger foundation.”
The East Side group also plans a monthly night out and kid-friendly activities and they freely share any information that might be helpful to other moms in the group, such as new service providers, therapies, Spring Break specials and more.
“I want every mom to have as much knowledge as they can,” Heather said.
Sometimes it takes social media groups to create that village of support, friendship and community to ASD moms on their journey.
“We’re just autism moms,” Jessica said. “We’re not better than you. We don’t know all the answers but if you put a group together, almost everyone can answer one of your questions. So, that’s the cool part about it.”
Grant opportunities for therapies
Masonic Home and School of Texas www.masonichometx.org
UHC (United Healthcare) www.uhccf.org
Act Today www.act-today.org
Blooming with Autism www.bloomingwithautism.org/faq
Orange Effect Foundation www.theorangeeffect.org