Faced with a lack of local resources, Bayfield families created their own resource-sharing group to better support children with conditions such as autism, attention deficit disorder or Tourette syndrome.
The group, called the Parenting Information Exchange, or PIE, is a place where parents can swap strategies, share concerns and find new resources. It comes with the guidance of a special education professional, dinners and free child care. Before the PIE group started last fall, these families were often left on their own to learn how to help their “neuro-diverse” children.
“We don’t get a lot of exposure in our town for what these diversities look like,” said Angie Scott, a Bayfield mom whose son, Stirling, 7, was diagnosed with autism this fall. “I don’t need you to be sad that he’s autistic, but I’d love you to recognize that he’s still a lovable and amazing person and be willing to see that he just communicates a little differently.”
Scott, a part-time pharmacy technician working remotely, helped start the group.
Before her son’s diagnosis, her family knew something was different with him, but no one could put a finger on anything, she said.
“Stirling is very verbal, affectionate and a bright kid. He gets along with adults because they find him adorable and quirky,” Scott said. He’s caring and empathetic and a big fan of trains and music. (His favorite song is “Chicago” by Crosby, Stills, Nash and Young.)
“But as he gets older, it becomes clearer that his peers find him unexpected or awkward,” she said.
They started to see impacts on his school work and social experiences. The family tried parenting classes, reading books, talking to doctors and different socialization tools. He was diagnosed with attention-deficit/hyperactivity disorder, but they decided to do an autism evaluation. In August 2020, a private evaluator concluded Stirling had Level 2 autism spectrum disorder.
“It was encouraging. It was scary, but it finally made sense,” Scott said. “It really felt like now we can get a big support under him and he can really thrive. I was naive to think, once you get a diagnosis everyone knows how to help.”
She started to reach out on Facebook groups, looking for activity and family support options for kids on the autism spectrum.
“It was like crickets,” Scott said.
That’s where The Community Treehouse in Bayfield began to help. Scott mentioned the lack of resources to Nicole Johnson, founder of the nonprofit, who also began reaching out. She connected with Denisa Marshall, a special education teacher with the Bayfield School District, who jumped on board to help with the group.
They began holding meetings at the Treehouse – at first attracting one or two parents, then reaching up to 12. They reached out to local businesses to provide dinner and set up child care in the playroom at the nonprofit.
“I feel, when I see the families talking and exchanging information and stories, what they’re most getting out of this group is support,” Johnson said. “They’re sharing amongst each other more than anything, besides having a professional there to guide them.”
The group meets every other Thursday, diving into different topics each week. They have covered how to explain to neurotypical siblings what’s going on, how to handle meltdowns in the middle of a grocery store and individualize educational program meetings. Sometimes, they bring in speakers, such as a counselor and an adult sibling of a child with special needs.
“Sometimes, we just laugh about things that other people might find crazy,” Scott said. “Although we have different needs in our children ... we kind of speak the same language in the way we have to deal with our parenting relationships.”
For Scott, the group has served as a support system while she has navigated the difficulties of accessing health resources in rural Southwest Colorado.
To get a diagnosis, she faced wait lists of about six months, some lengthened to a year because of the COVID-19 pandemic. Schooling was another challenge because of the specific legal and state requirements to set up a special needs learning plan. Their insurance also covered only one therapist in the region, someone who was wonderful but not the right fit for her son, Scott said.
“To look for a specialized therapist, I’m now on a two-year waiting list,” she said.
Marshall, who has 27 years of experience working in three different states, said it would make sense mathematically that rural areas might have fewer resources than cities.
“Having just moved to the area from a metro setting with more than 7 million people, the differences in available resources are very noticeable,” she said.
The PIE support group provides a “sense of belonging” for families who may feel like they are outsiders looking in, Marshall said.
“What the families are realizing is that we all have struggles and we all have experience, strength and hope to offer to others,” she said. “The bond that has developed between these families is indescribable.”
Scott encouraged other families to “just be open.” Periods like Autism Awareness Month in April help with community education, and there’s a movement to accept the diversity of autism and to embrace the skills that autism can bring.
“For my son, we call them superpowers,” she said. “We can ignore the autism that is happening around us and hope that they get by, or we can really learn about it and encourage people with autism to thrive because they have a lot to contribute.”