Walkathon fundraiser for Tourette, service dog groups
Mother of man with neurodevelopmental disorder organizing Bay Farm Island event set for Oct. 21
As Lauryn Adams prepares to hold the 5K “TicTalk-Bark-Walk” on Oct. 21 to raise awareness about Tourette syndrome, one could say the Alameda resident has been running a 23-year endurance challenge of her own.
Adams' son, Ben Moran, who is now an adult, was born with the neurodevelopmental disorder (britannica. com/science/Tourette-syndrome) that involves repetitive movements and unintentional vocalizations commonly referred to as “tics.”
Parenting Ben with his father, Dan Moran, has included all the usual struggles and many of the joys of raising a child — but the journey is undeniably far more intense due to his primary diagnosis and other conditions often associated with Tourette syndrome: attention-deficit/hyperactivity disorder, obsessive-compulsive disorder and autism spectrum disorder.
From 9 a.m. to noon Oct. 21, the walkathon (bit.ly/tictalkbarkwalk) will start and end on Alameda's Bay Farm Island in the Harbor Bay Ferry Terminal parking lot at 299 Adelphian Way. Adams says dog costumes and dogs on leashes are encouraged.
The walk, in addition to raising awareness and the canine costume competition for “cool prizes,” is a fundraiser for Little Angels Service Dogs (littleangelsservicedogs.org) and the Tourette Association of America Northern California & Hawaii Chapter (tourette.org/ chapter/ca-no).
The money raised will be split equally between the two nonprofits, with half going towards providing people on the Little Angels waitlist with service dogs and the other half supporting a special day camp for young children with Tourette syndrome that is held annually at Camp Arroyo in Livermore and run by the Taylor Family Foundation.
Adams says even though more people in the Bay Area have become familiar with Tourette during her son's lifetime, misconceptions and gaps in awareness remain considerable.
“I've come across people who think all it is are the swearing tics,” Adams says. “They don't understand the details, but the famous people who've come out to reveal they have Tourette (syndrome) or people on TikTok who explain what it is get noticed.
“There's a singer who has tics and during a performance couldn't finish his song and the audience finished for him. It was moving and got a lot of attention.”
The example Adams referred to was of Lewis Capaldi, a 26-year-old singersongwriter from Scotland who was unable to complete his performance while headlining and singing “Someone You Loved” at the Glastonbury Music Festival near Pilton in Somerset, England. The audience took up the tune and helped Capaldi to the finish line.
At the walkathon, anyone needing to help Ben reach the finish line is unlikely. He's been hiking lately in the Oakland hills with his dad, going on 10-mile bike rides and walking in Alameda with his service dog, Dallas.
Ben received his canine companion in part due to funds raised by a previous walkathon. Fees for service dogs are about $40,000, and Adams says the family raised about $24,000 of the total amount through the previous walkathon and other fundraising activities. Little Angels Service Dogs provides free service dogs to disabled children and adults, and though the group doesn't ask or require recipients to raise funds, donations to the organization help move individuals up the list.
Adams says Dallas provides multiple benefits for
Ben, including “deep therapy.” This is when the Labrador-golden retriever mix lays and spreads his whole body weight on Ben at home, the pressure of which calms and distracts Ben from stress that can trigger Tourette behaviors, she says, adding that Dallas acts as a social ambassador in public.
“Ben can be kicking up a storm, clapping or saying inappropriate tics, and people are quick to assume it is intentional. But if someone sees the dog, they switch gears entirely and have positive interactions. They see Dallas is a service animal, and they get it.”
Adams knows her son's greatest problems when he's in public are because his verbal outbursts and utterances don't sound like tics.
“They're full sentences,” Adams says. “He's had even the nicest people complain about it because they think it's intentional. He also says words that trigger people.
“He had three guys take him up on the sidewalk and punch him; he's been pepper sprayed, threatened, chased, had his backpack taken and had things thrown at him while riding his bike in Oakland. When he gets attacked, sometimes people see the little kid in him. They see he's deathly afraid so they stop.”
The exact cause of Tourette syndrome is unknown. Experts say it is likely caused by inherited and environmental factors and may involve how the brain transmits nerve impulses. There is no cure, but some people benefit from pharmaceutical treatments, lifestyle adjustments that reduce stress and therapy to lessen the symptoms.
In addition to the deep massages and companionship Dallas offers to Ben, Adams says Dallas is “the friend who always forgives.” Many people living with pets in their homes can relate, but Dallas is an exceptionally accepting animal, she says.
“Little Angels trains the dogs, and they were amazing. When I told them that Ben has a screaming tic, the trainer took the dog to the beach. She said she'd scream and scream and the dog eventually got used to it. Sometimes now, Dallas will just go into another room when Ben does it. Then later, when Ben calls out, he comes right back.”
Adams says that thankfully Dallas has added immense value to her life too.
“I slept for years on a trundle because Ben couldn't sleep alone until he was 14 years old. Ben, when he was
little, was never able to be away from me, but he would go independently into the neighbor's yard to be with the dog. So Dallas was a real break for me.”
The anti-psychotic medicines Ben's doctor prescribed to improve sleep patterns failed to work and actually caused him to rev up and remain awake. No adult programs exist to meet his needs, which means Adams, who has a full-time job, remains his primary caretaker and most energetic advocate.
“Every time I talk to someone about the walkathon, I'm trying to raise awareness about what Tourette syndrome
is,” she says. “The biggest thing I want everyone to know is the behavior is not intentional.
“Tourette (syndrome) is a compulsion, not an intention. It's like being a chocolate lover on a diet and having chocolate cake in your fridge. You're probably going to eat it if you open that door. Acknowledging or ignoring the tics; not “opening the door” by causing stress: and then treating someone with Tourette like you treat anyone is best.”