You can view the article on the magazine’s website here: Thrive Magazine Article
By Dawn McMullan
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
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.
Recently, I was asked to contribute to a magazine article about Hope and Gray. As an afterthought, the magazine editor requested that I give information for a sidebar about being a good advocate for your child. It got me thinking that this would be a good topic to talk about on its own.
As a therapist, I constantly found myself in a position to advocate for my patients. On any given day, I could find myself advising patients to report new symptoms to their doctor that they might otherwise think were insignificant; or collaborating with other therapists to decide the best way to tackle a functional problem; or arguing with insurance to cover a piece of equipment that they deemed unnecessary. In my professional life, I was very comfortable speaking up on behalf of my patients. So, as a mother, I was equally comfortable speaking up on behalf of my son. I have often said that I cannot imagine the difficulty that parents without a medical background must have when they find out that their child has autism.
Common though it may be, autism remains a mystery. This is further complicated by the fact that children with autism can vary dramatically in their symptoms, abilities and challenges. So, unlike other medical diagnoses, when a parent receives and autism diagnosis for their child, there isn’t exactly a guidebook as to what the next best steps are. In my case, the doctor just gave me a list of therapy centers that I could contact and said she would see us again in six months. Everything else, I had to figure out on my own. Even finding my way to the doctor that diagnosed Gray was a self-directed journey. I can easily see how other parents can take years to finally get to the same place.
Likewise, the tests, treatments and therapies that are recommended all cost lots of money. Without proper insurance coverage, families can find themselves in deep financial trouble. It is so important to understand your child’s insurance coverage and the laws that your state has in place to protect families like ours. In Texas, there is a state law that requires traditionally funded insurance companies to pay for therapies such as PT, OT, Speech and ABA (applied behavioral analysis) without limits to the annual number of visits that might apply to people without an autism diagnosis. Of course, I have found myself many times calling the insurance company to explain why their processing of my son’s claim is incorrect according to Texas law. If I had no knowledge of the law, I would just accept the determination that Gray was ineligible for further therapy. I would have to choose to pay thousands of dollars out of my own pocket or discontinue therapy.
With this in mind, I embraced the opportunity to share my thoughts on advocacy with the magazine editor. Here is what I gave her:
I believe that all parents of special needs children want to find the best and most helpful services for their kids. For many people, it can feel overwhelming to tackle the medical, educational and financial barriers that get in the way. It is important to remember that you are the person who knows your child best. The recommendations of medical professionals, teachers and insurance providers may or may not be appropriate for your child and your family. Don’t be afraid to ask questions about the reasoning behind recommendations. Don’t be afraid to disagree.
Here are some of my personal guidelines when assessing services for Gray:
– Be discerning. Only professionals who are passionate about their career may work with my son. I want them to love working with children who have autism and I want them to find my son particularly interesting. I have no time or patience for people who are just working for a paycheck and waiting for the weekend. My son needs people who are deeply committed to understanding and helping him. Anything less is a waste of time and money.
– 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 have been doing so far, they are more likely to work with you for the best outcome possible. Try not to create “sides” by being adversarial unless it becomes necessary.
– Keep a list. I often make lists of questions or wish lists of skills that would improve life for Gray and my family. It is helpful to have them written down so that they feel real and important. Then, I can decide who are the best people to share these questions and requests with.
– Good communication is key. I try my best to keep all of the members of Gray’s treatment and educational team in contact with one another. Whenever a big transition is coming up, I try to organize meetings where everyone can speak in person. At a minimum, I will connect everyone by email so that they can share opinions and concerns in a collaborative way.
– Know your rights in the school system. Under federal law, all children have a right to a free and APPROPRIATE public education. It is important to make sure that the education plan for your child is appropriate and adequate for their needs and will maximize their abilities to grow and learn. 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 rights with insurance. In the state of Texas, children with autism have special protections under House Bill 1919 that keep insurance companies from limiting services like behavioral therapy, speech therapy and occupational therapy. It is important to know if your insurance company must comply under the laws. Don’t expect the person processing your claims to know the laws. They often don’t. 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. If there is something more you would like to see in your child’s program, you are probably right. No one else is going to advocate for your child with the same passion that you feel. Believe in your child’s future and fight for it.
As a parent, I think it is natural to want to introduce your children to experiences that you enjoy. I’m sure we all began parenthood with visions of sharing trips and activities with our kids. Fathers think about playing sports together and mothers think about shopping and manicures. Of course, that is one of the most heartbreaking parts about learning that your child has autism: the future you envisioned just floats away. The big things take a while to let go of. Things like college and marriage and grandchildren are things that you really hope will somehow be possible, but, as time goes on, you start to accept that they likely are not.
The smaller day-to-day things are a little easier to accept because you just live with the status quo. You don’t sign up for any sports teams because you know it doesn’t make sense. You don’t sign up for swimming lessons because you think he won’t know how to follow the directions. You stick to fast food restaurants because explaining manners and proper behavior to your child with autism is just too ridiculous to imagine. I think that this is why so many parents of children with autism feel trapped. I’ve often commented to Barry that I feel like we never encounter other kids like Gray outside of therapy settings. His response is that, he believes, most parents of kids like Gray don’t take them out of the house unless it is for therapy or school or to a well-known autism-friendly location. I hate to presume what other parents are doing, but I think he may be right. That brings up the question: If you never take your child out into the community, how will he ever learn how to act?
Of course, I also have two other children who are typically developing little girls. For them, my dreams of bright futures and enjoying experiences together are firmly in place. Even before I was a mother, I knew that I would make it a top priority to teach my children to be good restaurant patrons and theatergoers. Barry and I really enjoy live theater, and a nice meal before or afterwards just makes the event feel special. Starting from infancy, we made a point to bring Zoe out to restaurants with us at least once every week or two. By the time she was four, Zoe had seen a number of plays at the local children’s theater and had a good understanding of proper behavior during a show. We have followed the same path with Lena and, I am happy to say, they are both very nice companions when the show is exciting and the menu has chicken fingers.
I guess all of the experiences with the girls over the years primed me for my mission to include Gray in our activities. All of our successful outings with Hope have shown me that Gray wants to be included. And, his path to learning the rules and expectations of different settings is not so different from typical children. It just takes a little more effort. Children, after all, need to be taught what is expected of them and often require corrections when they slip up. For Gray, I just keep my expectations around the same level as Lena. We talk about events before they happen with the aid of a social story and pictures on his iPad. The first few times we go to a new event, I resign myself to the fact that I am on a business trip with goals and objectives.
This has worked pretty well over the last few months. With Hope by his side, Gray is easier to manage and I am emboldened by our successes to strive for more. So, when I saw that the local children’s theater was putting on a circus show, I thought it might be a perfect opportunity to introduce Gray to live theater. Plays can be tricky. Performers and other audience members could become alarmed if someone starts throwing a fit in the 10th row. Children’s theaters are better, but Gray’s screams are much louder than your average toddler and I have cringed at the possibility of imposing his frustration on people who have paid a lot of money for theater tickets. A circus show, on the other hand, sounded like a show where noisy audience members could be more easily excused.
When the box office opened on the morning of the show, I called and told the house manager that my family would be bringing a service dog for my son. I’m really glad that I did that because she was so kind and accommodating. She told me that she would reserve some seats for us on the first row of the second section of seats. This would allow plenty of room for Hope to lay at Gray’s feet and it would give us a quick escape route if Gray could not tolerate the performance. Additionally, she gave me a few warnings about the show. She told me that there would be two dog acts in the first half of the performance. I paused for a moment and considered this. Part of Hope’s training includes ignoring other dogs when she is wearing her service pack. The most I have ever seen her do is pop her head up to look at other dogs. I told her that I felt certain Hope would not bark or rush towards the stage. She told me that wasn’t really her worry. She was more concerned by the possibility that one of the stage dogs would see Hope and rush out into the audience. THAT was a funny thing to consider. In all of my ruminations over bringing Gray and Hope to the theater, I never once thought that I needed to be concerned over a stage player abandoning his role to join us in the audience. I told her that, as soon as I saw the dog acts beginning, I would make sure Hope was tucked down flat on the floor to keep her out of view from the stage. Finally, she told me that the end of the first act would feature a group of drummers marching down the aisle in front of us. I thanked her for all of the information and felt better going into the theater with an idea of what to expect.
As for the actual performance, Gray did wonderfully. Like most of our outings these days, Gray tagged along with a happy expectant look on his face. I think that he has learned that, if all five of us are going somewhere, it’s going to be fun. I was grateful to see that his seat was a standard chair as opposed to a flip-up theater seat. Those can be challenging for most kids who struggle against being folded up inside; but for a kid with autism, a moveable seat pretty much guarantees nonstop movement and agitation. Gray climbed into his chair and Hope curled up at his feet and the show was mesmerizing. Barry and I both beamed at the peaceful look on Gray’s face when he watched the acts and enjoyed the music. If I had to guess, I would say that his favorite act was the girl with the hula-hoops who spun them in time to soothing music under purple-blue lights. He was motionless during that act.
The dog acts were a non-issue for Hope. I made sure to move my feet in front of her face when they began and I’m sure she never even knew that there was a dog on the stage. The only problem occurred when the drum line came down our aisle. I know it startled Hope from her sleepy down-stay at Gray’s feet. The spot light and very loud drums completely unnerved Hope. She tried to get up and leave, but I was already wrapped around her telling her that she was safe. I don’t think she believed me. The drummers were marching towards us and I thought she might dislocate her shoulders to pull free of her service vest. I wrapped my legs around her and held her close until the drummers had passed. Hope spent the second act curled up completely beneath Gray’s chair. She wasn’t taking any chances.
So, I guess the lesson is that everyone needs an opportunity to learn how to handle themselves out in the community. You pick what is important to you and your family and you practice. I’m not sure if we are quite ready for Shakespeare yet, but I hear that the Dallas Symphony is doing a kids’ series soon. Hmmm…
I have always dreaded Christmas Day. I like the holiday season…the houses look festive and people are friendly and parties abound. But, Christmas Day is usually pretty lonely feeling for me. I guess it goes back to the pre-text message and email days when the only way to reach people was to call their house phone or show up in person. Of course, calling or showing up at people’s houses on Christmas Day is not proper and I was taught at a young age to leave my Christian friends to their family time. In addition, just getting out and driving around on Christmas Day has an eerie feeling of post-apocalyptic solitude. That explains the age-old Jewish tradition of going to the movies and out for Chinese food. There is a sense of community in the crowded restaurants and theaters.
In recent years, even people who celebrate Christmas seem to have caught on to the idea of patronizing the only businesses that are open. Text messaging even makes it possible to set plans without worry of being disruptive. Unfortunately, until this year, our family was hit with the double dose of Christmas isolation. Having a child with autism can be isolating on any day of the year. But, on a dignified day like Christmas, it feels completely impossible to risk a bad scene when people’s options are so limited.
Christmas Day can feel like solitary confinement to a family whose child is prone to tantrums, maniacal laughter, aggression or generally unruly behavior. Unfortunately, these behaviors are quite common on days where the child’s schedule has been thrown off. Children with autism count on consistency and Gray counts on engagement from others to know what to do with himself.
About 4 years ago, we started the tradition of taking the kids to the Jewish Community Center for swimming in the indoor pool. This is a great activity for burning an hour or two. Surprisingly, there aren’t many other people who act on this idea. We can generally count on a pretty open swimming pool with lots of room to splash around. This year was no exception. Even though Barry had stitches after he sliced his hand open while preparing a bagel for Gray, he bandaged it up and swam those kids hard. (He’s a good dad, but a terrible chef). Of course, after the swimming is done, there are still several hours to kill and hanging around the house isn’t a lot of fun when Gray is bored.
Emboldened by Gray’s new affinity for dining out with Hope at his feet, I decided that this would be the year we try to return to the Chinese restaurant scene. Freshly showered and tired out from our swimming session, we showed up just as the restaurant was opening to ensure we got a table right away. My parents got to the restaurant ahead of us and secured a large booth in the back. It was the perfect set-up. The place quickly filled with patrons and I was delighted to see many familiar families. We had a great time. The food was fabulous and people we knew stopped by to chat. My kids tried foods I never thought they would.
Another family with small children sat at the table behind us. It was amusing to see the difference between their dining experience and ours. They had a two-year-old who kept squealing and crying and thrashing around throughout the meal. Meanwhile, Gray sat nicely and munched on an egg roll. My mother was so agitated with the other family that I had to laugh. She kept asking me if there might be something wrong with the child at the other table. “Why is their normal kid behaving so badly when your autistic son is able to sit so nicely?” Barry and I exchanged a chuckle. We both knew that we were just one dog (and a boatload of therapy) away from having a much worse scene at our table.
Of course, my favorite part of leaving a restaurant these days is the look on people’s faces when we get up from the table and a big black dog emerges from underneath. It’s hilarious to see the shock and hear the exclamations, “Oh my! I didn’t know there was a DOG in the restaurant! Isn’t that amazing!” It is amazing. I soaked in every step to the door that garnered a look of kindness or admiration from other diners and employees. We peacefully made our way through the crowd of hungry customers waiting at the front for a table to open. Gray and Hope easily navigated the crowd and a smiling man held the door for us to exit. We all stepped out into the brisk night with big smiles on our faces. We were all so happy. It was, indeed, a very merry Christmas!