Monthly Archives: August 2013
An epic summer
First day of school
Now that school has started, it gives me a chance to reflect on our summer. Each year, as school begins, it is only natural to look at our children and consider what is different from last year. For Zoe and Lena, I begin each year with optimistic expectations of new skills and greater independence. For Gray, I generally start with a healthy dose of anxiety. This year is different, though. This year, I am buoyed by the incredible gains Gray made over a summer that was filled with both new adventures and a casual ease in activities that used to cause us so much trouble.
May brought its usual anxieties: trying to get the school plan hammered out for fall, working out the camps so that Gray would not be idle at home, worry over his behavior at the pool, worry over his ability to cope with summer travel. In addition, we were also fiddling with Gray’s medications to get his mood stabilized. In our attempts to smooth out his wild swings between crazed-mania and narcolepsy, we tried 4 different medications. Each one had its own bizarre side-effects and none of them really helped very much. After a severe skin reaction, a huge weight gain, full-body tremors and hair-triggered irritability, I decided to take a break from medication manipulation and see what “Baseline Gray” might look like.
We started the summer with a decision to focus his behavioral therapies on good manners in public – especially at the pool. Last year, Gray was like a wild animal at the pool. He would fly through the entrance, attempt to jump in the pool fully clothed, swim with glee and exit the pool like a bullet with an unknown target. Last summer, I sported a huge bruise for a couple of weeks after trying to make him wait at the table while I got everyone out of their cover-ups and ready to swim. Gray was so enraged, he bit me in the stomach and then wailed on the ground to the horror of everyone around me. Last summer, Gray sported numerous bruises after running up the pool steps and attempting to sprint across the pool deck only to slip and fall. Last summer, Barry and I would have to coordinate so that one person could keep Gray swimming while the other person ordered food and had it waiting on the table lest he jump out and steal other people’s french fries.
This year, we were able to build a social story to explain how we calmly walked to the entrance, paused to gather towels, settled in at a table and waited for everyone to be ready before we walked into the pool. This year, we practiced walking slowly when leaving the pool, using the iPad to request food and walking with the iPad to the snack bar to order burgers and fries. Last Friday night, as the whole family enjoyed a calm meal poolside and discussed the lovely weather that graced our week, I beamed over my sweet boy who sat nicely at the table and ate his dinner. It is truly amazing that, through the course of the summer, we have evolved to the point where going to the pool is a fun and relaxing experience for everyone.
Having fun at camp
For camp, I was lucky to find a program that specializes in working with kids who are on the spectrum and use communication devices. I feel so fortunate to live in a city where a program like that exists, but I suspect that the demand for such programs is only growing with the autism rates. The sensory gym environment with multiple swings and trampolines at this camp helped to mitigate my guilt about having him structured and scheduled all summer long. In reality, Gray thrives on structure and schedule and the gym was pretty much heaven for him. I was very pleased with the staff and quality of instruction that he received there. So, the long drive was well-worth his happiness to go and the continuation of his skill-building over the summer. I am relieved to know that there is a place where Gray and Hope are welcome and accepted for school breaks in the future.
Of course, Hope attended camp with Gray each day. It’s funny because the only time the camp reported “problems” with Hope were when she was forced to be separated from him during the day. If he was on a swing, she wanted to be right next to him, not left at the edge of the gym. If he was at the snack table, she wanted to be right under him instead of outside the door. Her desire to be with her boy gave me comfort that a bond is growing between them. Even though Gray doesn’t seem to notice her beyond the handle on her service pack, I know that she sees him as her responsibility and he is comforted by her presence.
I have already written about our travel successes in my posts about our trips to Seattle and Portland, but I can’t emphasize enough how liberating it feels to know I can plan future family vacations without a pit in my stomach.
Of course, the problem with developmental disabilities is that you never really know what is helping your kid the most. If we didn’t have Gray in all of the therapies he has attended over the last 6 years, would he look the same? I doubt it, whenever professionals spend any time with him, they always comment on how well he is doing despite the severity of his autism. Is it just his development and age that have brought us to this new level of skills? That is probably a part of it. The trouble is that he doesn’t exactly show us when he is ready to move onto something new. His therapists and I just have to keep re-introducing things (like the social stories) to gauge when he is ready for them. Sometimes it works and sometimes it doesn’t.
The best kid at the table!
Calmly waiting for his dinner
The one thing I am sure of is that Hope has changed everything for us. Even on his worst days, we can go out in public and eat in a restaurant and walk around kid-friendly destinations because he knows what is expected of him when he is out with his dog. Overall, I firmly believe that Gray is calmer and more self-assured with Hope in his life. It’s the best medicine we could have ever found.
We are in print!
One of my favorite local magazines decided to do a story about Hope and Gray for their September issue. Today is a VERY exciting day.
Rhoni Golden and her three children claim a table at NorthPark Center’s food court to dine on Sonic. Nine-year-old Zoe and 4-year-old Lena sip blue slushies with their meals, while 7-year-old Gray sticks to his usual — a hamburger and fries.
It’s a commonplace scene, except for the black labradoodle lying calmly under the table. Dogs are not allowed at NorthPark, unless they are service dogs.
Hope is the labradoodle’s name, and she is tethered to Gray. Golden wouldn’t brave this seemingly mundane trip to Sonic without the dog, “considering how autistic my son is.”
“My husband says I should emphasize the words ‘mentally handicapped’ — severely,” Golden says. “My son does not speak, is not completely potty trained and just this morning, I had to clean poop off the walls of his room.”
Life is anything but mundane for the Golden family, who live in Lakewood Hills. Rhoni Golden and her husband, Barry, learned their second child had autism when he was 19 months old. A physical therapist herself, Golden immediately placed him in therapy, believing that it would “fix” Gray enough to ready him for a mainstream kindergarten classroom.
By the time Gray was 4, and still not talking, Golden’s dreams of a “normal” life for her son were shattered.
As long as Gray could be strapped into a stroller, the Goldens could go to the park or out to dinner without too much disturbance. That ended around the time he turned 5.
“We rarely go anywhere as a complete family. It’s just pretty much impossible,” Golden said earlier this year. “I’ve been with Gray at the park when he’s run out of the park and sat down in front of a moving car. Once I checked email for a couple of minutes, then ran through the house screaming his name to find out he’d run outside and was playing in the sprinkler naked.”
Then Hope entered their lives.
The family didn’t name the dog, and when Golden first learned her name, she found it a little sappy. But Hope has lived up to her moniker.
Autism service dogs are a fairly new innovation. The organization that trained Hope, Autism Service Dogs of America (ASDA), was founded in 2002 and was the first to specialize in training dogs for people with autism, says Kati Wolfe, ASDA’s placement training director and autism specialist, as well as Hope’s trainer.
A “Today” show episode introduced the Goldens to autism service dogs last fall, and by February, Rhoni Golden was on a plane to Portland, where she spent a few days of intensive training with Hope before bringing her home to Dallas.
Hope is only the second autism service dog in Texas; one other resides in Austin, Golden says. The labradoodle was an $18,000-plus investment, one that Golden is so grateful her family could afford because she believes Hope is worth every penny.
Perhaps the hardest consequence of autism is loneliness, not only because few others understand the situation but also because of the self-induced confinement.
“People tell me they don’t see many other kids like Gray, and I say, ‘Well, they don’t go out,’ ” Golden says. “I think a lot of people feel sort of shamed.”
Gray, especially when he is in unfamiliar settings, can become overwhelmed by sounds, noises and crowds, “which causes him to go into tantrums, to throw himself to the ground, and he might lash out at others,” Wolfe says.
“Children with autism are losing everyday skills of how to access their community, how to go into a restaurant and be quiet, because they are isolated,” Wolfe says, “and when you isolate, you build fear.”
Hope changes this dynamic. On the trip to Sonic, Golden attaches Gray’s belt to the service pack on Hope’s back as soon as they step out of the car.
“She’s an anchor for him,” Golden says, with four feet of tether acting as Gray’s boundaries. He approaches the mall holding a handle on Hope’s pack, as he has been taught, and maintains this stance most of the time. If Gray starts to unravel, Hope stands firm, and Golden, who holds the dog’s leash, feels the tugging and quickly reacts to steady her son.
“Without Hope here right now, Gray would probably be running around stealing fries off people’s plates, or running down the escalator with me shoving people out of the way trying to get to him,” she says.
Hope has changed the lives of Zoe and Lena just as drastically. Between tater tots, Zoe exclaims her excitement that her family can now go to movies together or pull in to TCBY on a whim, she says, and even vacation together.
“I want to have some time with my family — not just mom or just dad,” Zoe says. “We can go out with Gray now because of Hope.”
It has cost Zoe to have a brother like Gray. Until Hope, she was limited on what she could do socially by whether her family could find a babysitter (not an easy task with an autistic child) and invitations from friends, “and you can’t just say, ‘Hey, invite me over,’ ” Zoe says. Despite this, she views herself as her brother’s protector and caretaker, and ardently defends him.
“Other people think of him as horrible and bad. They don’t understand him,” Zoe says. “Some autistic children, they can’t love. Gray, I know he loves me.”
She mimics the way he tells her this — “I uh yooou.” She also knows by the way he tackles her, one of Gray’s forms of hugging. It pains Zoe that she can talk to Gray only through an iPad with a special app that turns it into a speaking device. The app allows Gray to communicate about things like what he wants to eat.
“He has a nice voice on his iPad, but I want to hear his voice,” Zoe says. “What I’ve taught my little sister is, ‘You and me are Gray’s sisters, and we take good care of him, and we will make him talk.’ ”
“Me and Zoe will help Gray,” Lena echoes.
And now that Hope is part of the family, she is Gray’s protector, too, Zoe says.
“She’s holding him, she’s taking care of him,” his big sister observes. “She wouldn’t let him run down the aisles and scream and pull people’s hair and hurt people.”
When Gray is untethered at home, he sometimes goes to Hope to pet her, and makes cooing noises, Zoe says. “I can tell he loves Hope,” she says.
The whole family has fallen head over heels for the labradoodle. Golden emphasizes that Hope is not a pet, but sometimes has to remind her children. On the walk to Sonic, Lena affectionately throws her arms around Hope and her mother chastises, “Lena, no, she’s working.”
Hope seems unfazed, however, and Gray continues calmly walking beside her.
“He stops and looks around a whole lot more,” Golden says. “Before the dog, he was so focused on moving, going, getting to the next destination. He didn’t focus on his environment at all.”
It would be easier for the Golden family to do what many families with a severely autistic child do — hole up at home, and deal with the challenges privately rather than having to deal with the frustrations and embarrassments that inevitably happen in public. But that was never an option.
Golden describes herself as an “open book — it doesn’t occur to me to hide anything.” When she realized the extent of Gray’s autism years ago, she quit her job as a physical therapist to focus on her family. But when she was helping patients, “my attitude to them was always, ‘Live your life. Go make the best of it.’ ”
She has adopted the same mantra for herself and her family, and for the most part, “everybody is rooting for us. Everybody wants to hear the happy ending about the disabled kid who gets to go out and live a normal life,” Golden says. On a few occasions, however, the Goldens have had to defend Hope’s right to be in public places.
Gray is a first-grader this year, and because of Hope, the Goldens felt confident enough to move him from Oak Hill Academy to Dallas ISD’s John F. Kennedy Learning Center near Ross and Henderson. When they tried to enroll Gray, DISD’s legal department fought them, saying the district could not provide a handler for Hope. The district thought an aide for Gray would be enough, Golden says, but she insisted otherwise.
“Wherever my son goes, the dog goes,” Golden says. “With autism, it’s gotta be consistent. It’s all or nothing.”
The Goldens were backed up by a precedent of successful federal suits involving autism service dogs, as well as by the principal and teachers at JFK, Golden says. The district eventually agreed that Gray’s aide also could be Hope’s handler.
So on May 30, Hope became the first service dog to attend a DISD school.
The Goldens know new challenges will arise as Gray grows older and bigger. One of the worst characteristics of autism is the tendency to assault strangers, Golden says, and “teenage assaults are worse than little kid assaults.”
She tends to live in the present, however, taking one day at a time. Thanks to Hope, the living is easier these days — most importantly for Gray, Golden says.
“I don’t know what life holds for him in the future,” she says, “but right now, while he’s living under my roof, I’m going to make sure he has the best life possible.”
To read about the Golden family’s challenges and victories with Hope at their side, visit hopeforgray.com. While there, click on “donate” in the navigation bar to make a contribution the “Hope for Gray” fund started by the Goldens to increase the number of children who can benefit from a dog like Hope.
– See more at: http://lakewood.advocatemag.com/2013/08/27/first-dallas-isd-service-dog-aids-lakewood-familys-autistic-child/
Just a regular family flying back home
As I write this post, my heart is giddy. I know that might sound silly for me to get so emotional over a travel day. Most people would not be giddy at all after living this day, but I can’t help it. Today’s flight exceeded my wildest dreams. Through great teamwork, some luck, and a miracle dog we tackled our travel day with great ease.
Once again, I scheduled this flight for the afternoon so we could have some time to burn off some of Gray’s energy. After breakfast, Haley took Gray and Lena to the hotel swimming pool while Barry entertained Zoe, and I packed up in peace. We instructed her to just keep moving Gray to the center of the pool so that he had to swim non-stop. About 90 minutes later, Haley showed up in the room with a tired boy and a cheerful girl.
We may have cut it a little too close, but we boarded the plane with plenty of snacks just as they made the final boarding call. Hope was much more relaxed with take-off this time around. She did not shake or try to get into the seats. She just sat up and looked out the window. Meanwhile, Gray calmly ate his lunch while he looked out the window. After a few snacks and some time looking at family pictures on his iPad, Gray peacefully dozed off. For the next two hours, I typed on my computer, took the girls to the bathroom, and chatted with Haley while Gray snoozed away with his head on the window. I was like a regular person on a flight. It was actually pretty pleasant and relaxing. It killed me to know that everyone else on that plane was just taking this stuff for granted.
About an hour before landing, Lena got restless and started playing musical chairs. She wanted to sit with me and then she decided to climb over Hope to look out of the window that was next to Gray. Of course, this woke him up. My heart raced a bit as I readied myself for his response. He just bent over, ran his fingers through Hope’s fur and rested his head on the tray table. The look on his face was purely peaceful. I couldn’t believe how calm he was. After a few more minutes, he took his iPad and requested a trip to the bathroom. He walked nicely down the aisle with his hands to himself (Gray’s therapist made a nice social story about flight etiquette). When we returned to our seats, Gray sat beautifully eating snacks and watching videos until our flight landed.
At baggage claim, a woman approached me to ask about Hope. She said that she had a friend whose son has autism. She wondered if Hope had made much of a difference in our lives. I resisted the urge to laugh. It was a legitimate question, but it seemed like such an understatement after the week we had just completed. Instead, I gave her the website address for this blog and invited her to share it with her friend. I mean, that is the whole point of this blog, right? Someone sees this beautifully behaved boy and his dog and they have no idea how far we have come. While I talked to her, I realized that I had the perfect example to share right in front of me.
Hope lay on the floor at my feet and Gray calmly stood next to her watching the baggage carousel spin. He did not run towards it or jump or squeal. He just stood next to his dog and watched while Barry and the girls grabbed our luggage off of the belt. I turned to the woman and said, “I know you will think I am exaggerating, but this right here is a miracle. If someone would have told me a year ago that I would be standing here having a conversation with a stranger while Gray stands by my side, I would have thought that person was delusional.” I really made a point to stop and appreciate the freedom I felt. I was standing in baggage claim after a very long travel day with no screaming, no fighting, no panic to escape. My hands were free and I was having a casual conversation with a stranger while we waited for our bags.
On the drive home, I just kept thinking about how much I love this family. We may be crazy, but we are growing and getting better by leaps and bounds. Who can say that a long travel day is almost as good as an actual vacation day? I can. I am blessed with the gift of contrast. I know how far we have come, and I am thrilled.
River Fun
Kati’s parents live in a house on a river just south of Portland. One evening, after camp, they invited us along with another family and some of the puppy raisers to come for a boat ride. It sounded like a fun evening, but I was a bit apprehensive about taking Gray out on a boat. Coming from Texas, we have lots of friends who go boating on the various lakes around the state, but the unpredictable nature of Gray in new (and possibly dangerous) situations has always prevented me from accepting an invitation. In addition, with Hope added into the mix, I have felt even more uncertain about how she would fit into the boating experience. Of course, I knew that if I ever wanted to try out the whole “boat trip with the family” thing, there was no safer place to do it than with Kati.
When we arrived at their house, it was a relief to be met with so many friendly and helpful people. Even with close friends, I have to take on the entire Gray-Hope unit because no one else really knows what to do with them. This is generally not a problem for me since Barry takes the girls and we have our system down. But, in Portland, everyone we we had contact with felt equally comfortable with Gray and Hope. I barely got everyone out of the car before people showed up to take Gray and Hope inside to get ready. It was so luxurious to change into my bathing suit in a room by myself! By the time I got down to the dock, Kati’s parents had already chosen a life vest for Gray and Kati was putting it on him. To my surprise, he did not protest at all about the tight fit or bulky vest.
I put vests on Lena and Zoe, and we all loaded onto the boat: Kati’s parents, Kati, 2 of the puppy raisers, Haley, Barry, Zoe, Gray, Lena, me AND Hope. Yes. Hope came along on the boat. It was actually my request because I figured that, if this went well, and we could secure another invitation for a boat ride back home, I needed to be prepared to bring Hope along. Kati said that she hadn’t brought one of the service dogs on the boat before, but she felt confident that it would be fine.
Gray was thrilled to get on the boat and immediately scrambled to the front to take his seat for the ride. He squealed a little when the engine started and we pulled away from the dock. We moved to the center of the river and Kati’s father threw out a 3-seat inner tube to pull behind the boat. Three of the riders climbed onto the tube and away we went. I held onto Hope and Gray sat next to Kati at the front. As soon as we picked up speed and started making turns, Gray sat 
up on his knees and craned his neck up to catch a face-full of wind and water spray. He was smiling from ear-to-ear and raised his hands up in the air like Leonardo DiCaprio in Titanic. I really did not know what to expect from him, but it was clear that he was in heaven.
After a couple of riders took turns on the inner tube, Kati said, “I’m going to take Gray!” Of course, Lena immediately asked if she could join. That made me nervous. How could Kati protect Lena if Gray got out of control? How could Kati manage Gray if Lena fell off? Kati’s father assured me that he would take it slow and easy and, before I knew it, Gray was climbing onto the tube with Kati. I handed Lena over the back of the boat and waited to see how everyone would react when the line grew taut and the boat took off. I’ve never seen a look quite like the one I saw on Gray’s face. I’m sorry that I didn’t have my good camera on that boat with me to catch a close-up. I can only describe his expression as what you might see on a person who rubbed a bottle and watched a genie spring out. He looked surprised and ecstatic and incredulous. I think it may have been the most exhilarating experience that kid had ever felt. With Kati’s hands across their laps, both Gray and Lena did not move an inch during their ride. 
They both just laughed and laughed at the speed and the water spraying up into their faces.
I sat at the back of the boat with a perma-grin on my face and tears streaming down my cheeks. I told the other girls that I felt so lucky to be able to give Gray an experience like this. I am sure that there are few other kids with impairments like Gray’s who get to ride on inner tubes behind a speed boat. There was nowhere else in the world I would have tried this without having to swallow my fear. Even Hope joined in on the fun when she jumped from the doc into the river to swim with one of the other dogs. Here on this river outside of Portland, I just knew that the situation would be under control. I am a brave mom, but Kati makes me more brave. And, we all benefit from a bit of bravery…especially on a day like this one.
ASDA camp photo journal
Because there were so many great pictures at camp, I decided to dedicate an entire post to our photo album. Enjoy!
Back to Portland
The main reason why our family vacation took us to the Pacific Northwest this year was to attend camp with ASDA. Every year, the organization puts on a camp for kids who have an interest in animal training. This year, the organization decided to do a separate one-week camp for the kids who have received autism service dogs and their siblings. When I heard about this, I knew it would be a perfect way to spend our vacation this year. The camp is structured so that everyone gets what they need: The service dogs get some time with trainers to brush up on any skills that have gotten rusty. The whole camp goes on a field trip each day, so the kids with autism get to practice community outings with their dogs. The siblings get to spend time with other siblings who are in a similar situation with the unique family dynamic that having a brother with autism creates. All the kids (with autism and without) get to be in the same camp together – a situation that would be virtually impossible anywhere else and felt special to my girls who often want to do things with their brother but can’t. And, most importantly for vacation purposes, Barry and I got about 5 hours each day of grown up time to explore Portland.
For the girls, it was exciting to see the place where I spent my week of training with Hope. For me, I felt so happy to return to the city where I had my most life-changing experience to date. Portland felt like a second home. The girls from ASDA felt like family and friends. I was so happy to come back and reconnect with them.
Because I wanted to maximize my ability to be social with the ASDA crew, I made a last-minute decision to invite one of our babysitters to come along with us for the Portland portion of our trip. It felt like an insanely indulgent thing to do, but I rationalized that this would be our first family vacation where there wasn’t a kids’ club that would care for Gray or the other kids. I didn’t know how easy or exhausting Gray might be on this trip and I didn’t want to take a chance on Barry and me taking turns caring for Gray while the other got to go out and do fun things with Zoe and Lena. I also really wanted to have the opportunity to enjoy these people beyond camp drop-off and pick-up and I wanted Barry to come along. We have never traveled with a “nanny” before, so I wasn’t sure what to expect. Fortunately, we were traveling with Haley, our college-aged babysitter who has been with my kids for almost 4 years. I often say that an autism mom’s best friend is a great babysitter. Haley definitely proved that point.
Haley became part of our lives through her older sister, Lauren. Lauren was in school to become a speech therapist when Gray was in preschool at Callier. She answered an ad I had posted looking for someone to do some extra work with Gray in the afternoons. Her response email was so warm and sincere that I knew she would mesh well with our family. That was 6 years ago. What followed was 2 years of devoted care from Lauren and, when she graduated and became a licensed Speech Therapist, Haley (then a high school student) stepped in to seamlessly fill her spot. Over the years, Haley and Lauren have become a big part of our family. When I told the girls that Haley would be joining us in Portland, they cheered and, when Gray saw Haley in this strange setting, his face lit up with glee.
Our first morning of camp proved to be a bit hectic and we were very grateful for the extra set of hands. Getting 3 kids and a dog down to breakfast and off to camp took a lot of effort, but everyone was excited to see Kati and the other people who have worked so hard to get these dogs ready for their big jobs. The girls were eager to spend a week at camp with their brother and they were even more thrilled at the idea that they would help with training the puppies who had not yet graduated. Gray was happily rolling along with us. He loved the new setting, sleeping in the same room with Barry and me, eating unlimited Froot Loops at the hotel breakfast, and he quietly gazed out the window as we drove off to camp.
I immediately relaxed when I saw the set up that ASDA had put together. Anticipating that Gray would be a handful, Kati had assigned one of the puppy raisers (who is also an autism specialist) to be Gray’s shadow for the week. She told me that she had lots of experience with Proloquo on the iPad and I knew within minutes of meeting her that she and Gray would do just fine together. In addition to Gray’s shadow, Laurel – ASDA’s program administrator, is also an autism specialist in the school district. The program was set up so that the kids with autism would get some therapy work in the morning while the trainers took their service dogs for some “tune-up” training. Meanwhile, the siblings got to work on an art project and socialized. Every afternoon, the whole group went on a field trip to different kid-friendly places (Pump It Up, the Portland Children’s Museum, a movie theater, a mini-amusement park and an arcade/jungle gym fun center).
When I picked the kids up each afternoon, they were brimming with stories about how great the day had gone. Zoe was proud to report Gray’s good behavior and accomplishments. Lena was exuberant over her assignment to share puppy training duties with Zoe in working with a dog that was set to graduate in the next class. At the end of the week, Kati met with each family to give a report of what their service dog had worked on and gave us exercises to continue at home to keep the skills sharp.
When I look back on my selection process for finding the right organization to provide Gray’s service dog, I’m not sure I fully realized how lucky I was in picking the right one. Most of the other service dog organizations that I looked at provided animals for a variety of disabilities including autism. I chose ASDA because they were the only organization who focused solely on autism. Looking back, that appealed to me because I knew that the needs of a child with autism are very different than other disabilities. For example, I’m pretty sure that this is the only disability where the person being served is likely to run away. I was thinking about the service animal and her training. It never occurred to me that I also needed to consider the relationship that the organization would have with my son and our entire family and our training. After spending a week back in Portland at camp, I am convinced that ASDA is uniquely qualified and committed to serving families like mine. The level of care and expertise that they bring to their clients is unparalleled.
I guess we have a new annual summer plan…Portland, we will see you next year!
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