The Good Fight / How one local mom thought out of the box, went up against DISD, fought for the rights of her child and won

WORDS
Dawn McMullan
ILLUSTRATION
Katie Galasso
PUBLISHED
February 2014 in
DFWThrive
UPDATED
January 28, 2014
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Last February, Rhoni Golden wrote down three goals for her family, centering on her 7-year-old son Gray and the autism service dog she was about to meet:
 
1. Gray needs to be potty-trained.

2. Gray needs to stop disrupting our family with his tantrums and hyper-manic episodes. It makes him miserable, and it makes everyone around him miserable.

3. We need to be able to go out in public as a family without the fear of Gray running away into a dangerous situation. We deserve to go visit friends or walk around the mall or check out a street festival like other families do.
 
“If this works,” she wrote in her blog, Hope for Gray (hopeforgray.com), “life is about to get REALLY good.”
 
Fast-forward almost a year to the Goldens’ lives with Hope, the service dog she was on her way to meet. Hope is the first service dog to be allowed into a Dallas ISD school. With Hope in their lives, the family of five – including 10-year-old Zoe and 4-year-old Lena – goes to the mall, goes to restaurants and travels together (uneventfully). Although Gray still isn’t potty-trained, goals 2 and 3 are celebrated every day.
 
With Hope in tow, life did get really good. The 50-pound black Labradoodle with soft curls – who loves to nap on her dog bed and play fetch with tennis balls in the backyard when she’s off the clock – changed almost everything about the family’s life.
 
Life with a service dog
 
Autism affects one in every 88 children (one in 54 boys) and is the fastest-growing serious development disability in the country, according to Autism Speaks. Although the disability has no cure, families frequently seek therapy, medications and communication tools to ease its effects. About a decade ago, autism service dogs became one such “tool” – still relatively unknown, even by families affected by autism.
 
Gray Golden is severely autistic, mostly nonverbal and doesn’t understand boundaries like street curbs or a table of strangers at the mall. He communicates through an iPad app. At restaurants, Gray used to run around and steal food off people’s plates. He spent a lot of time being grabbed by his parents and having tantrums on the floor because of it.
 
Now, such tantrums can be gently quelled with the phrase “get your handle,” directing Gray to take the handle on Hope’s service pack. While Hope is always “on” when she’s wearing her service pack, this action gets Gray into a similarly focused frame of mind. Hope follows her handler’s words, and Gray follows Hope’s lead.
 
Rhoni and her husband Barry first heard about autism service dogs on the Today show in the fall of 2012. Research led her to the Portland, Oregon-based Autism Service Dogs of America, a nonprofit that trains and places service dogs. A few months later, she was on a plane to Portland. Golden spent a week there training with Hope and Kati Wolfe, placement and training director at ASDA. Wolfe, who grew up having tea parties with her dogs and worked with children with disabilities at her mom’s preschool, has a degree in psychology with a minor in special education (focusing on autism) and is a certified professional dog trainer.
 
ASDA places seven to 10 dogs each year. When working, the dogs wear a clearly labeled service pack and are all business. At home, they go off-duty and are treated like any other family pet.
 
Children with autism thrive on predictability and structure. A service dog offers both. “The dogs are a constant in a child’s life, which is huge for autism,” Wolfe says. “I don’t like to call the dogs tools, but in a lot of ways they are. The dog is a tool the child has by their side all the time.”
 
Most of the dogs Wolfe has placed have gone into schools without issue. As part of the home visit, Wolfe spends three days with the dog at his or her child’s school. “We believe the more the child and the service dog are together, the more the system will work,” she says. “With any system, you’re trying to reach the child through consistency and predictability.”
 
A human aide, which DISD quickly offered up for Gray, is different from a service dog because that person isn’t constant, Wolfe says. While a school aide is in the classroom, he or she is not at the soccer game, restaurant or on an airplane for the family vacation. Hope is.
 
Hope goes to school
 
Hope came to live with the Goldens in their Lakewood Hills home in February 2013. At the time, Gray was going to a private school for children with learning differences. Not believing this particular school was a long-term solution, the Goldens began exploring their options.
 
At their first ARD (admission, review, dismissal) meeting with DISD, the Goldens explained Gray’s learning and behavioral issues: that he was a hygiene risk (Golden has an entire blog post titled “The Pooptastrophe” if you want the gory details), a flight risk and needed one-on-one attention. At the end of the evaluation, DISD officials said they believed the district could provide an appropriate education, including the one-on-one requirement.
 
As discussions continued, Golden says, the principal and teachers at the John F. Kennedy Learning Center were enthused about Hope coming to school with Gray. But things took a detour when DISD’s legal department got involved. Parents and schools nationwide have been engaged in similar discussions in recent years, with districts arguing that service dogs do not provide anything a human can’t provide, that offering a handler for the dog is above and beyond their legal mandate and that the dogs are mere companions – not truly medically necessary.
 
A 7-year-old boy in California named Caleb Ciriack and his dog, Eddy, were one such case. In 2011, a federal judge ruled that Caleb’s school district must allow Eddy, who was trained by ASDA, to come to school.
 
Barry Golden, an attorney, showed up to the first meeting on the legal issue with the Ciriack case in hand. DISD had never said Hope couldn’t go to school with Gray; the 10-day legal battle centered on who would provide the handler – the Goldens or DISD.
 
The difference between an autism service dog and, say, a service dog for the sight-impaired is that a severely autistic child like Gray is not cognitively capable of handling the dog, requiring an adult to do so during the school day. The two sides quickly resolved the issue, and Hope came to school with Gray for three days last May (as a trial run for this school year and with Rhoni there to help), returning in August. The school year started off a bit shaky. DISD did provide an aide: a 50-year-old woman who was afraid of dogs. A new aide, however, is working out well, Golden says.
 
“Sometimes we have to try things that haven’t been done before,” says Jon Dahlander, DISD media supervisor. “In this case, the school and the parents worked together to come up with a plan to benefit the student, and that’s great. Change is difficult for everyone, but we’re on the other side of that.”
 
The difference Hope makes
 
Legally, the Goldens weren’t required to explain how a service dog would help Gray. That said, the district did ask what a dog could do that an aide couldn’t. If Gray is having a meltdown, for example, it’s difficult for a person – even a parent – to console or confine him. A person handling Hope, however, can simply click Gray’s belt (which he wears around his waist) into Hope’s service pack and say, “We’re going for a walk.”
 
“It’s a cue for him,” Golden explains. “He hears that click and before he knows it, he’s standing up, taking her handle and walking out the door. That can take a tantrum from 30 minutes down to two. A person can’t do that.”
 
Just sitting at his desk at school can be a challenge. But if Gray is attached to Hope, who is in a down-stay position under his desk, he knows he needs to stay put. “There are only so many times an aide can say, ‘Sit down, Gray. Sit down, Gray.’ Then he’s mad. When he’s attached to Hope, he knows,” Golden says. “One of the biggest deficits for people with autism is they don’t see lines of delineation, like this is the sidewalk, that’s the street. They don’t have any kind of boundaries about where they’re supposed to be.”
 
That causes stress. With a service dog, kids like Gray know where they’re supposed to be: with their dog.
 
When Gray outgrew his stroller, taking him out in public was almost always a disaster, usually ending in multiple apologies. Sitting at NorthPark Mall, 10-year-old Zoe giggled while enjoying lunch from Sonic with her mom, her two siblings and Hope. She described how Gray used to be manic in public – “laughing like a madman, pinching, jumping, bouncing off walls literally.”
 
You can tell she’s still excited about what most families take for granted. “For us all to go out, that would be the craziest thing in the world,” Zoe says. “But now, it’s just normal.”
 
“It’s way more than I thought it would be,” Golden says of bringing Hope into the family. “I really thought all it would be was tying an anchor around his waist. That would be helpful enough. I didn’t know it would change his attitude about the world, that he’d be a calmer kid overall. But really, truly, it has done all of that.
 
“We’re living life. There are five of us in this family. Now it’s not an uphill battle all the time.”

Published February 2014
SIDEBAR

Be an Advocate


Rhoni and Barry Golden went from viewing a TV segment on autism service dogs to getting a dog in their home within 15 months. Obviously, Gray is lucky to have such advocates looking out for him. “No one else is going to advocate for your child with the same passion that you feel,” Rhoni Golden says. “Believe in your child's future and fight for it.” Golden offers this advice for advocating for your child:
 
• Be discerning. Only professionals who are passionate about their career may work with my son. My son needs people who are deeply committed to understanding and helping him.
 
• Keep a list. I often make lists of questions or wish lists of skills that would improve life for my family. Then I can decide which are the best people to share these questions and requests with.
 
• Keep everyone in communication. I try my best to keep all members of Gray’s treatment and educational team in contact with one another.
 
• Know your rights in the school system. Under federal law, all children have a right to a free and appropriate public education. Don't be afraid to ask for more than they offer. The district’s job is to keep costs down. Your job is to get the best education possible for your child.
 
• Know your insurance rights. In the state of Texas, children with autism have special protections under House Bill 1919, which prohibits insurance companies from limiting services such as behavioral therapy, speech therapy and occupational therapy. Mistakes in claim processing are common. Don't hesitate to ask for a supervisor.
 
• Go with your gut. If you know that the services your child receives are inadequate, speak up.
 
• Always start out friendly. Most people in the business of helping kids with special needs really do have the best intentions. If you start out winning people over and appreciate what they’ve been doing so far, they are more likely to work with you for the best outcome possible.


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