Ten years ago, Carie Bude never would have fancied herself a mom type, much less the future founder of a mother’s support group. She was a career-driven woman who thrived on chaos; she and her husband, Alain, had never even talked about having children.
When they finally took the plunge, their first son, Maxim, slipped seamlessly and contentedly into their lives. The family moved from California to Port Townsend to live a charmed coastal life as bed-and-breakfast proprietors and antique store owners.
And then Leo came along.
“Every autism mom has a story,” Bude said. “We all have a place where it started.”
Hers is one that has changed her, she says, down to her soul.
The Budes developed acute concerns about Leo, now 4, when he was 15 months old and began to display some of the behaviors commonly associated with autism. He didn’t talk, he rocked constantly when sitting, and most troubling, he started banging his head against the wall.
Leo’s pediatrician told his parents over and over that nothing was wrong. Kids love to rock, the doctor said; they love the sensation.
But managing Leo’s behavior on a daily basis had become so stressful that the Budes were forced to close the B&B. Their charmed life had turned into one of isolation and tension, with few personal, social or professional resources close by.
With no firm diagnosis of autism but a near certainty about what Leo’s symptoms indicated, the Budes began a weekly trek to the University of Washington Autism Center. After months of four-hour evaluation sessions, specialists confirmed 20-month-old Leo’s condition.
“When you get the diagnosis, the floor falls out,” Bude said. “You have no reference point… it’s like going through a death.”
Anticipating the need for ongoing trips to Seattle throughout Leo’s childhood, the Budes moved to Bainbridge for easier access. In addition to setting up their business, Bagatelle, they began putting out feelers for local resources that would help supplement the therapies they planned to pursue across the water.
What they found was that most of what they needed to help Leo thrive was right here on the island. In addition to being able to choose from a cache of talented therapists, they discovered the Bainbridge Island School District’s developmental pre-school program, which serves kids ages 3 to 5 who have physical, developmental and learning disabilities and delays.
Through therapy and preschool, Bude met a couple of other moms of kids with autism. Finding common ground personally as well as through their children, they started meeting regularly for dinner.
And despite continual promises that they weren’t going to talk about their kids, most evenings they shut the restaurants down as they lingered to offer each other the kind of mutual support that mothers with “neurotypical” children couldn’t envision needing.
“This disorder is so specific and so diverse at the same time that you had to have walked in someone else’s shoes,” Bude said.
At home, Bude had amassed an entire library of reading matter on autism, most of which was textbook-dry. Then late one night she finished Jenny McCarthy’s “Louder Than Words: A Mother’s Journey in Healing Autism.”
On turning over the final page of the actress’s humorous, practical, hopeful account, Bude knew she wanted to use the book as the centerpiece for a larger support gathering that built on the network she’d already created. She also knew the group’s name: Island Autism Moms. IAM.
Bude figured out a meeting time and place, sent email to people she knew and posted flyers around town. Then she “sat back to wait.”
Since then, over just five months, IAM has grown into a group of a dozen women who are firmly “in,” with a half-dozen on deck who possess a strong interest but are waiting for the right time. Their kids’ ages run from 2 to 15, with a range of abilities and levels of functioning.
Topics have run the gamut: getting through the holidays, managing extended family members’ response to a child’s diagnosis, vaccines, dietary supplements and nutrition.
The last has been a hot discussion item. Anecdotal evidence and some research show that dietary changes can have a dramatic impact on the behavior of children with autism. Bude herself discovered that when she removed gluten from Leo’s diet, his levels of aggression dropped, he was able to listen to music, and he started to dance.
Bude usually researches the selected discussion topic and acts as the facilitator. She says she’d love a co-leader. “It’s like being back at college sometimes and writing a thesis.” But at the same time, she has never once viewed running the group as a sacrifice.
“I never saw it as a support group in that we gripe about things. Its a positive thing in that we get together, share stories, and laugh a lot.”
Autism diagnoses are rising; Bude cites recent statistics indicating that nationwide, instances have risen from 1 in 10,000 people in the 1970s to 1 in 150 today.
As with any diagnosable condition, it can be difficult to untangle statistics like these. Rather than being an indicator of actual percentage increases, are these diagnoses a result of increased awareness and more targeted testing? Or are changes in modern living – diet, technology, environmental factors – having a growing impact on our neurological makeup, resulting in more individuals on the autism spectrum?
On the flip side, how many kids with autism still aren’t being diagnosed?
What’s clear in Bude’s mind is that “the numbers aren’t going in the other direction.”
And while she wouldn’t claim that she or IAM can answer any of these questions definitively, the group in its short lifespan has undergone an evolution from providing inward support to generating outward action.
For starters, it has organized the first island-wide Autism Awareness Day, to be held on April 2. Tables will be set up in Winslow throughout the day, with IAM representatives offering hopeful messages about living with autism – right down to t-shirts, flowers and balloons – and most importantly, information.
In addition, representatives from IAM have begun discussions with the Bainbridge Island School District about instituting new ways of supporting kids with autism, 20 of whom will graduate next year from the developmental preschool program and enter into mainstream classrooms.
Topics of discussion have included re-instituting a developmental kindergarten program to supplementing the preschool program, giving kids with special needs an extra year of tailored support beyond preschool. Another idea is the formation of a special education parent-teacher organization.
Bude says that while nothing concrete is in place, BISD has been receptive, and talks are ongoing.
Meanwhile, earlier this month Washington state passed an autism awareness bill that accounts for, among other measures, the creation of an autism guidebook for public schools; extended programming for students with autism; and more robust teacher training.
In many respects – public awareness, rising government support on local, statewide and national levels – Bude considers this the best time in recent history to have a child with autism.
And while the idyllic, small-town port-side life she wanted for her family has a different set of anchors than she envisioned, she says the work she’s done on Leo’s behalf has humbled her and given her new purpose. She believes IAM, too, has changed its members for the better.
“Our little group got together to read a funny book, and look at where we’re going with it,” she said.
BOX
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I am hope
The island’s first Autism Awareness Day takes place on April 2, with flowers, balloons and information tables set up outside Town & Country and at Winslow Mall. For information about regular IAM meetings or Autism Awareness Day, visit islandautismmoms.blogspot.com or email Carie Bude at catb@iam-hope.org. Also see Bude’s blog about Leo at www.leodances.blogspot.com.
