thrive DALL AS-FORT WORTH
VOL. 9 ISSUE NO. 3
MAY/ JUNE 2017
A RESOURCE FOR FAMILIES LIVING WITH LEARNING DIFFERENCES AND SPECIAL NEEDS
MEET CARLA & JACK
WHAT MAKES THE VIRAL SENSATION AND HIS MOM ROAR
MUST-HAVE SPECIAL NEEDS RESOURCES
11 PARKS AND PL AYGROUNDS FOR ALL ABILITIES
TRIAL & ERROR ARE EXPERIMENTAL DRUGS WORTH THE RISK?
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VOL. 9 NO. 3
18 TESTING … ONE, TWO, THREE
What to do when your child develops
a life-threatening disorder? Some parents roll the dice with experimental medicine. words Elaine Rogers
22 PLAY FOR ALL
Inclusive parks in Dallas-Fort Worth words Jessica Myers
34 Life Goes On words Josh Schilling
departments TAKE NOTE
thrive DAL L AS-F O R T WO R TH
7 Predicting Autism in Babies 8 Make Believe 8 Dinner Planned 8 Don’t Be Tacky
11 Mom Next Door: Carla Robbins 14 Float Away 14 Sound Advice: Making Time for OT 14 Free Your Mind 16 Mommy Diary: Jessica Green
27 5 Things To Do in May & June
VOL. 9 ISSUE NO. 3
MAY/ JUNE 2017
A RESOURCE FOR FAMILIES LIVING WITH LEARNING DIFFERENCES AND SPECIAL NEEDS
MEET CARLA & JACK
WHAT MAKES THE VIRAL SENSATION AND HIS MOM ROAR
MUST-HAVE SPECIAL NEEDS RESOURCES
11 PARKS AND PL AYGROUNDS FOR ALL ABILITIES
TRIAL & ERROR
ARE EXPERIMENTAL DRUGS WORTH THE RISK?
PHOTOGRAPHY Nick Prendergast
28 Directory of Special Needs Resources
staff box Publisher/ Editor-in-Chief Joylyn Niebes
Creative Director Lauren Niebes
EXECUTIVE EDITOR Wendy Manwarren Generes MANAGING EDITOR Carrie Steingruber
ASSISTANT EDITOR Jessica Myers
EDITORIAL DESIGNER Katie Galasso
ADVERTISING COORDINATOR Amy Klembara
RESEARCH EDITOR Beth McGee
CALENDAR EDITOR Elizabeth Smith
GRAPHIC DESIGNER Susan Horn
ASSOCIATE PUBLISHER Diana Whitworth Nelson ACCOUNT EXECUTIVES Samantha Barnhart, Nancy Crosbie, Stacy Howton, Nancy McDaniel, Kristen Niebes, Sandi Tijerina, Kerensa Vest
AUDIENCE DEVELOPMENT DIRECTOR Candace Emerson
OFFICE MANAGER + DISTRIBUTION Robbie Scott
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PROVIDING ABA THERAPY FOR AUTISM TREATMENT ACROSS THE LIFESPAN
predicting autism in babies
the brain that could lead us to actually screen children in the future in a different way,” says Craig Powell, associate professor of neurology at University of Texas Southwestern Medical Center. Powell’s laboratory research program focuses on autism and other neurodevelopmental disorders. In theory, researchers could begin developing earlier interventions to prevent these children from falling behind in their social and communication skills. After all, most experts — and nearly all parents — agree that early behavioral therapy for children with autism is key to their future success. “The earlier [kids with ASD] get therapy, the better the prognosis is,” says Nadia Suckarieh, a board-certified behavioral analyst at the Hope Center for Autism in Fort Worth. Denton mom Jill Briesch, our Mom Next Door from last year’s July/August issue, knows this all too well. At 21 months, her oldest son, Alexander, was communicating in the bottom 1 percent developmentally. But within five months of starting applied behavior analysis (ABA), he had tripled his developmental score, she says. So when younger brother William came along, Briesch Researchers at the Carostarted researching options lina Institute for Develright away, knowing her This study opens opmental Disabilities at younger son was at a up the possibility that the University of North greater risk of being dithere may be a combination Carolina performed agnosed as well. When magnetic resonance he was 7 months old, of … biomarkers … in the imaging (MRIs) on she and her husband brain that could lead us sleeping infants without trained themselves to actually screen children a family history of on physical response in the future in a autism and on high-risk therapy and hired grad infants at 6 months, 12 students who had experidifferent way.” months and 24 months. They ence with ABA. measured brain volume, surface At 12 months, William area and cortical thickness and became the youngest child ever to be found that not only did the brains of highdiagnosed with ASD in Dallas-Fort Worth. risk infants who later developed autism grow While it was a provisional diagnosis from the faster between 12 and 24 months (while autistic Center for Autism and Developmental Disabilisocial behaviors were emerging) than the brains ties at Children’s Health, it allowed him to start of those who were not diagnosed with ASD but receiving Early Start Denver Model and ABA also between 6 and 12 months. The scientists intervention therapies. By 40 months, William’s used a computer algorithm and the brain scans scores had actually fallen below the cutoff for to accurately predict 8 out of 10 high-risk infants autism spectrum disorder. who would later be diagnosed with autism. Briesch, who is an ambassador for Autism The results show that it may be possible to diBrainNet, an organization that collects postagnose children with a high familial risk of autism mortem brain tissue donations for research much earlier than they currently are, and while purposes, is cautiously optimistic about this these findings are exciting, experts caution that a new study. lot more research is needed before this technology “If we can start identifying children earlier, makes its way into doctors’ offices and clinics. and we have developed some treatments and some “This study opens up the possibility that systems, I think science overwhelmingly shows us there may be a combination of what we call biothat these kids are going to be better off,” she says. markers — or abnormalities or differences — in “To me, the implications are just huge.”
brain scans spot early signs of ASD WORDS NATALIE SMITH
hen Liz Riley’s son, Sean, was 18 months old, she began noticing the early signs of autism spectrum disorder (ASD). Having grown up with a younger sibling with autism, the Plano mother was all too familiar with the developmental disorder. Sean started losing some of the limited language skills he had developed just months earlier. Alarmed, Riley took Sean to his pediatrician, but the doctor wasn’t concerned. “We were kind of discouraged from getting a diagnosis,” Riley says. “Basically I was told to see how he would respond to [speech] therapy.” It was not until Sean was 2 ½ and completely nonverbal that he received the official ASD diagnosis. Riley’s story might sound a lot like yours. A pediatrician’s wait-and-see protocol is normal. As there is currently no medical test to detect autism, doctors rely heavily on observation, looking for behavioral symptoms such as repetition to appear before diagnosis. But most ASD symptoms don’t typically surface until a child is 2 or older. And for moms like Riley, the wait for an inevitable diagnosis means frustratingly delaying developmental interventions that could help. That all may soon change. A new study published in the journal Nature, a science publication, earlier this year is the first to show that it may be possible to predict which high-risk infants (those who have an older sibling with autism) would be diagnosed with autism at 24 months.
make believe Last December, EQ Kids Club in Frisco opened its doors and themed play stations to kids ages 8 and younger. To make the animal sanctuary, grocery market and other play areas (and complementing costumes) more accessible to kids with sensory sensitivities, owner Marcia Morales hosts Family Fun Nights on the 15th of every month from 6–7pm. She pulls the shades and softens the music as guests with special needs ages 12 and
younger practice their social skills leading Jeep tours in the safari zone and taking orders at the hot dog stand. Opportunities for tactile stimulation — like using stethoscopes or “cooking” with wooden spoons and oven mitts — abound. Kids with lots of energy can burn it off on the indoor trampoline while those who need a break crawl inside one of the tents. Admission includes tea for parents and a snack for kids; no need to RSVP. —Jessica Myers
Family Fun Nights at EQ Kids Club, $10 per child; free for siblings 12 months and younger // 3245 Main St., Suite 239, Frisco; 469/579-4926 // eqkidsclub.com
Tacky Box, $29.99 for gift set tackybox.com
Don’t Be Tacky
Thanks to PlateJoy, you can pass the meal-planning baton to a personal chef who will curate weekly menus around your child’s dietary needs. When you sign up, select your meat preferences, any ingredients to be avoided (like gluten or dairy), and how much time you have to cook each day. You’ll receive customized meal plans with snapshots and prep times; if you see something that won’t fly with your picky eater, remove it from the queue and a new recipe automatically takes its place. Plus, the Digital Pantry keeps track of the items you already have on hand so that when the week’s menu hits your inbox Sunday morning, the accompanying shopping list only includes the ingredients you need. Sign up online for a free 10-day trial. After creating an account, you can download the app for iPhone and Android to browse menus on the go. —J.M. PlateJoy, subscriptions start at $69 for six months platejoy.com
Forget the swear jar — next time your kid (or, ahem, you) says something not so nice, lock it away in a Tacky Box. The brainchild of Dallas mom Chris Kent Phelps, Tacky Box is more than just a wooden box where kids can put the tacky things they say and hear; it’s a social emotional learning tool that gives kids (especially those who don’t read social cues very well) a concrete way to understand how their words and actions make others feel. By writing down their experiences, littles learn to recognize and, over time, rein in their tacky impulses. Three local school districts use Tacky Box in their classrooms, but parents can purchase Tacky Box for home use too — gift sets come with an illustrated book that encourages kids to choose kindness. —Carrie Steingruber thrive
Photos courtesy of EQ Kids Club and Graephotography; Tacky Box; Illustration ©iStock.com/cat_arch_angel
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Mom Next Door
Robbins, 45, a self-described music lover (the entire family is), says it’s not uncommon for her to have tunes playing in the house or in the car. It’s kind of always on. But there wasn’t any background music playing the day she shot the video of Jack, then 8, singing Perry’s hit song. Robbins put WORDS ELLEN ROSSETTI the recording on PHOTOGRAPHY NICK PRENDERGAST YouTube, and it went viral, nd you’re gonna hear me quickly amassing more than roar…” Those six words, lyrics 600,000 views. Robbins and from Katy Perry’s 2013 single Jack appeared locally on News “Roar,” bring tears to Carla 8 Daybreak and were featured Robbins’ eyes even today, on Today.com too. The 35nearly four years after her son Jack, now 12, first second video that received uttered them. That’s because they were the first national attention marked a monsix words that the Frisco mom’s severely autistic umental success for Jack and brought and epileptic son spontaneously strung together. some clarity for his mom as well. And it made him an internet sensation. “It was just groundbreaking for us You may recognize him. because we realized he was in there paying
attention,” Robbins explains. “He has likes and dislikes, and he wanted us to know.” Before his online debut, Jack hadn’t been able to convey feelings or emotions. Robbins describes him as generally a very easy-going kid. She never knew if the food, clothes and activities she presented him with were things he favored or hated. He was only able express his most basic and immediate needs with single words like “snack” and “water.” Now, four years later, not too much has changed. Jack still communicates with simple words, but he is better about giving opinions: He sings snippets of songs he likes (“Macho Man” by the Village People, “It’s Tricky” by Run DMC, “We Will Rock You” by Queen and “Throwing Stones” by the Grateful Dead are
“I have always felt, from the very beginning when Jack was first diagnosed, how important it is to take mental breaks.”
ABOVE / Southwest flight attendant Carla Robbins spends the afternoon grounded with her two wingmen — her boys, Jack, 12, who’s been diagnosed with autism spectrum disorder and epilepsy, and Joe, 10.
current favorites) and asks for more food or refuses it, depending on his preferences that day. It’s progress. Slow progress, but progress nonetheless. Jack started speaking shortly after his first birthday. “Mamma,” “Dada,” “duck,” “dog” and “ball” were part of his daily verbal repertoire — or at least the beginning sounds of those words. But at 18 months, Jack stopped using his words, and Carla, a longtime Southwest flight attendant (21 years to be exact), and her husband, Brent, an underwriter at American National Bank of Texas, began to worry. “When we tried to get him to say those things, he couldn’t,” Robbins recalls. They started him in intense speech therapy shortly after his second birthday. A few months later, Jack was diagnosed with autism — right before little brother Joe was born. He began applied behavior analysis (ABA) at 3 and occupational therapy followed the year after that. And ever since, it’s been a busy, busy schedule: Robbins spends four days of her week shuttling Jack to therapy sessions and Joe, now 10, to karate or soccer practice, running the household and cooking organic and dairy- and gluten-free meals for her family. Plus, she serves as a board member for the National Autism Association of North Texas (NAA-NT), a nonprofit she got involved with three years ago that provides families dealing with autism spectrum disorder (ASD) with financial and educational support but also honors moms, teachers and therapists annually with special events like spa days, dinners and social time they may never get otherwise. “It’s such a rewarding outlet,” Robbins admits. “I love meeting other warrior moms and seeing the bravery and strength they personify. I am constantly inspired by my fellow autism moms, and it brings me immense pleasure to help them in any small way.” The other three days (weekends and one weekday) are spent in the air, an escape of sorts (she thrive
gets to wake without an alarm and skip cooking) that Robbins says helps her keep things in perspective. “[Flying] gives me a break, and I meet all kinds of people on the plane and see what others struggle with,” she says. “It reminds me that our family is not alone in our challenges.” In her scarce spare time, she tries to make herself slow down and appreciate everyday moments at Jack’s pace. Right now, she enjoys that he responds to her request for a smile with the word “cheese.” It’s the little things. She also prioritizes time with Joe, planning mother-son day dates to the movies or to get frozen treats at iCream or Purple Kiwi, both in Frisco. “It’s important to give Joe special one-onone attention to let him know he’s important too,” she says. She even manages to carve out time with her husband of 14 years. The couple usually spends their alone time snuggling on the couch watching something on DVR after both kids have gone to sleep. And on her days off, the two hours between 1 and 3pm are reserved for her. “I have always felt, from the very beginning when Jack was first diagnosed, how important it is to take mental breaks,” Robbins says. “That’s not to say I don’t have my moments, some crying moments, feeling defeated and tired. But I do make it a priority to take care of myself.” What does she do during her solitude? Sometimes she hits the gym and reads a book while climbing floors on the StairMaster. Sometimes she watches The Walking Dead. And sometimes she makes organic deodorant, a craft she started when she was pregnant with Joe and searching for natural options, to sell in her online Etsy boutique Wren’s Wellness. In the seemingly nonstop bustle of everyday life, Robbins admonishes parents to remember to take time for themselves, even if it’s a few solitary moments in the car, music blasting, singing “’Cause I am the champion, and you’re gonna hear me roar …” at the top of your lungs. t
thrive DA L L A S-FO RT WO RT H
directory a searchable, expansive database of North Texas special-needs resources search by service, condition and location
rm: H E L P Sound Advice Making Time for OT
Vis a Vis Salon & Day Spa, float sessions from $70 2815 Allen St., Dallas, 214/884-8886 spavisavis.com The Float Spot, $45 recess float; $65 reset float 3750 Long Prairie Road, Flower Mound 4040 Legacy Drive, Suite 105, Frisco thefloatspot.com
float away If an uninterrupted bubble bath is on your wish list for Mother’s Day, check out saltwater floatation therapy. A report in the Journal of Stress Management found that floating improved sleep and mood (and decreased pain, stress and anxiety). Experience it for yourself: @Peace Floatation Spa in Colleyville offers a private suite with a shower, dressing area and of course the tub — a lightproof, soundproof bath filled with 800 pounds of Epsom salt dissolved in skin-temperature water. Control lights and music during a 60-minute soak.
At Vis a Vis Uptown in Dallas, tranquility capsules contain 700 pounds of dissolved Epsom and Dead Sea salts, plus buttons to control music, color therapy lighting and the automatic door — keep it ajar if you’re feeling claustrophobic during the one- to two-hour float or seal it shut for total sensory deprivation. Or call to reserve a session in the i-sopod tank at The Float Spot in Flower Mound or Frisco, where you’ll be encased in total darkness for a 30-minute recess float or a 60-minute reset float for deep relaxation. —Jessica Myers
free your mind
Rachel Wolverton is a pediatric occupational therapist at DOTS Home Care in Dallas and mom to Jude Hass, the first male model with Down syndrome to walk the runway at New York Fashion Week. Rachel provides therapy services in home, day care and private school settings. For more information, visit DOTSHomeCare.com, call 972/895-3818 or email Rachel@dotshomecare.com.
We’ve known for several years now the positive effects meditation can have on the brain — studies report that focusing the mind and sitting in silence helps relieve anxiety and depression, among other benefits. Well now there’s a class that’s specifically designed to help stressed-out parents find inner peace. Mastermind, a meditation studio in Dallas, offers a weekly 60-minute Mindful Parent workshop starting in July that gives you tools and techniques to manage your child’s emotions … and your own, through self-control, self-regulation and emotional intelligence. Plus, it’s a chance for parents to gain some social support, which is crucial to overall well-being. Pop in to any one of the Thursday evening sessions or make it a regular commitment on the calendar. —Wendy Manwarren Generes
Mindful Parent workshop, $45 per session for one parent; $60 for both parents // Mastermind, 3858 Oak Lawn Ave., Suite 410, Dallas, 214/522-4575 // mastermindmeditate.com
©iStock.com/andresr; Photo courtesy of Mastermind; Illustration by Mary Dunn
@Peace Floatation Spa, floatation therapy from $80 1304 Glade Road, Suite 300, Colleyville, 817/485-3223 atpeacefloatationspa.com
If you’ve ever struggled to find time between caregiving tasks to complete activities recommended by your child’s occupational therapist, you’re not alone. Successful implementation of any home program is dependent on matching it to your family’s lifestyle. Routines are the primary source for incorporating your child’s therapy into your day. For example, you can use home entry and exit routines to address handwriting goals by attaching a chalkboard to the main door and having your child write their target letter every time they go through. Reframing tasks is another effective way to incorporate program activities into established routines. Substituting an ice cube tray for a plate at mealtimes encourages a child’s developing pincer grasp and offers multiple practice opportunities per day. Reviewing your routines with your child’s OT allows them to adjust your home program accordingly.
Home & Community based ABA Therapy Family-centered services with a focus on quality of life Positive Behavior Supports Corp. provides a variety of applied behavior analysis (ABA) services to individuals of all ages and diagnoses across the state of Texas. We serve clients through a variety of funding options including private insurance (Aetna, Cigna, BCBS, UHC, and more), private pay, and TX Workforce Commission. Our services are individualized and based on the specific needs of each family, and are delivered in-home by highly qualified, experienced, and dedicated professionals, including bachelor’s level (BCaBA), master’s level (BCBA), and doctoral-level (BCBA-D), behavior analysts. Behavior assistants are available to provide ongoing support under the supervision of our behavior analysts to ensure adherence to positive behavior support principles and practices. Parent training is a primary focus and our programs are designed to empower parents and other caregivers to support clients within their natural routines so they can be successful and self-sufficient. In addition, we also provide comprehensive behavioral intervention and consultation services for schools, group homes, and other agencies. Questions? Visit us online at www.teampbs.com or call 855-832-6727 to speak to your local Regional Coordinator (extensions: 3000 for North Texas, 1396 for all other Texas areas). ©
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A Day in the Life of JESSICA GREEN Former Kilgore Rangerette Jessica Green, 34, and her husband, Joe, live in Wylie with their 5-year-old daughter, Cooper, who has autism spectrum disorder, sensory processing disorder and mixed expressive-receptive language disorder. Joe is a home theater installer for Best Buy, and Jessica works from home as an I-joist designer for Universal Forest Products, runs a Facebook page for other Wylie moms with children with autism, and recently started a special needs Sunday school class at New Hope Church in Wylie.
:45AM My alarm goes off, and I snooze for an extra 15 minutes. 7AM Now I absolutely have to get up. My husband has already left, and my wonderful 5-yearold daughter is already awake — I can hear her babbling through the baby monitor in our bedroom. She is nonverbal according to professionals, but that sure doesn’t stop her from using her voice as much as possible. 7:05AM I negotiate, with the help of a tablet, to get her to sit at the table while I pop a waffle into the toaster. While that cooks, I scramble her egg so it can cool off while she eats her waffle. 7:25AM After a few “Come on, finish eating” remarks from me to keep her on schedule, she finally finishes. She has to eat so she can take all her vitamins — there are ones for breakfast, afternoon and before bed. While she eats I pack her mid-morning snack and water bottle and put them in her backpack, and I also set her communication tablet, which we have nicknamed her “talker,” next to her bag. She takes it with her all day to be her voice, so I try really hard not to forget it (though I do on a rare occasion). 7:40AM I need to do her hair, brush her teeth and dress her (this happens at the kitchen table), so we can get out the door. 7:50AM And we’re off. It’s a 10-minute drive to her first stop of the day, her applied behavioral analysis center. She spends 25 hours a week there. I drop her off, and then I pick up breakfast on
the way home. From the comfort of my sweatpants I check my emails and begin my workday. 10:55AM I start Cooper’s lunch. Due to her sensory processing disorder, she is, shall we say, particular about her food. No meat or veggies for that girl, so I have to get creative in hiding them in things. Recently, we’ve also chosen to keep her on a gluten- and dairy-free diet; statistics I’ve found say around 60 percent of kids with autism show improved behavior, development and speech when eliminating gluten and dairy, so we are giving it a shot. I have 15–20 minutes to get her lunch prepared so she can consume it when it’s hot and fresh. 11:15AM I leave the house to make it back to her ABA center to drop off her lunch before their 11:30 lunchtime. Then I go back home and see what else I can complete for work before my daily alarm sounds. 12:25PM My alarm rings. It’s a 10-minute warning before I have to leave to pick up Cooper. Snooze. 12:35PM It rings again, and I head back to her ABA center. I have to allow 10 minutes for a pickup tantrum — they don’t always happen, but when they do, allowing any less than 10 minutes will make us late for our next stop. 12:45PM I arrive at the ABA center. Thankfully, no issues occur, so I spend five minutes talking to the therapist about Cooper’s day, her progress and any struggles she had. 12:50PM We head out and make the five-minute drive to her second therapy location. She sees her speech therapist for 30 minutes, then her occupational therapist for 30 minutes immediately after. I drop her off and go home to do more work, run a quick errand and grab some lunch before returning to pick her up. 2PM Her day officially ends at 2pm, and then we drive home. She requests four snacks in the next few hours and I turn the TV in our office-playroom combo to Dora the Explorer so I can finish working while she plays. A multipurpose room for an office and a playroom sounds odd, but it works for our needs, as I can see and talk to her while I work. 5PM I clock out and immediately walk into the kitchen to make two meals for dinner, one for the picky tiny person and one for my husband and me. Hubby comes walking through the door. He helps to entertain Cooper while I make her a quick dinner first; while she eats I move on to our dinner. We sit in front of the TV for dinner because we’re lazy
Photo Courtesy of Allison Duckworth/Eleven Thirty Six Images
rm: M O M M Y
All About Jessica
What she’s reading Cure Your Child With Food by Kelly Dorfman Yearly destination We go to Broken Bow, Oklahoma, once a year, but also somewhere else that varies. Restaurant she frequents with the family We love Yen Jing and Ta Molly’s, both in Greenville. Favorite date night spot Usually B&B Theatre in Wylie, in their reclining seats in the Marquee Suite Biggest challenge Asking for help instead of trying to be Superwoman, then actually allowing people to help me Next big purchase Another round of in-vitro to try for baby No. 2 Favorite indulgence Moscow Mule Hobbies Refinishing furniture, redecorating, cooking
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Greatest fear That our daughter will never live her own, independent life Snack provided by
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like that, and by the time we eat, my daughter is done with her food so she hangs out with us on the couch. 8PM Time to give Cooper a bath. She soaks and we go over her ABCs and counting and other vocal attempts they are working on at her therapies. She babbles on while she splashes and plays with her 53 bath toys. 8:20PM She gets out, and then I put her jammies on and brush her hair and teeth. She goes to cuddle with her daddy for 10 minutes and then she is in bed. 8:30PM I am exhausted, so I flop back on the couch to bond with my husband over our long DVR list. 10PM Hubby heads off to bed, but I stay up for another two hours. I like the silence in the house to recharge and watch cheesy shows while everyone else is asleep. 12AM I head to bed to get some much-needed rest. t Diaries are penned by moms (and dads) in the Dallas-Fort Worth area. The authors volunteer to share a day of their choosing and are not paid or endorsed by Thrive. Send your diary to firstname.lastname@example.org. All submissions are subject to editing and may be cut for space.
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Testing … One, Two, Three WHAT TO DO WHEN YOUR CHILD DEVELOPS A LIFE-THREATENING DISORDER? SOME PARENTS ROLL THE DICE WITH EXPERIMENTAL MEDICINE.
WORDS ELAINE ROGERS
STARTED SEVEN YEARS AGO WHEN
Matthew, then an active, bright 7-year-old, began complaining that it was hard to walk. Though he’d had some developmental delays as a toddler and received on-site physical therapy through his child care center in Lewisville, this malady was new. He’d suddenly collapse in the parking lot and lament about numbness in his feet. His mother, Teresa Wood, 47, made an appointment with a neurologist. Matthew was diagnosed with Duchenne muscular dystrophy (MDM), a rare, incurable condition that attacks muscle function, gradually robbing a person of the ability to walk, move their arms and care for themselves. And eventually, lung and heart function fall prey to its deadly grasp. “When a doctor tells you your child has a terminal illness, you go into hyperdrive with research and finding Facebook groups of other parents dealing with the same diagnosis,” Wood explains. “You become part of this whole community of families facing the same fears and challenges. You find out where the best specialists in the country are who are dealing with this disease. And you learn about the clinical trials that can give you access to the newest treatments. It’s just what we all do.” That’s because, for some, like Matthew, whose DMD is caused by a specific nonsense mutation, there aren’t any approved therapies to treat it (at least not right now). And understandably, Wood is not content to accept losing her son to DMD. C O N T I N U E D O N T H E N E X T PAG E
A STUDY IN PARTICIPATION
Desperate for answers, Wood and parents in similar situations frequently turn to clinical trials as a way to receive access to experimental drugs when other options have failed or simply haven’t been presented. Clinical research trials are studies that help doctors better understand diseases and explore potential new treatments or prevention. In a clinical trial, typically led by a doctor, participants receive specific interventions, which might include drugs, devices, procedures or a regimen of dietary changes, for instance. Dr. Drew Bird, the director of the Food Allergy Center at Children’s Health in Dallas and an associate professor of pediatrics at University of Texas Southwestern Medical Center, oversees several clinical trials, including studies on patients with life-threatening reactions to allergens such as peanuts. “The way trials are designed, they require large numbers of individuals with the same disease to be studied in multiple places by multiple doctors using a standard approach,” he explains. “This determines whether the effect of that intervention is actually valid or whether it’s like snake oil — where, whether it’s a placebo or the treatment, it didn’t make any difference in the kid.” Clinical trials have a very specific participation criteria, so all patients with a given disease or condition may not be eligible. Luckily, there was a clinical trial already in progress at Cook Children’s in Fort Worth that
Sign Me Up!
Ambrea Jones’ then 5-month-old “The medical [staff] didn’t tell daughter, Atia, was eligible for. us anything about treatments or The infant was diagnosed with choices we might have or clinical Pompe disease, a rare inherited trials,” she says. “Either they neuromuscular disorder that didn’t know or they didn’t considcauses progressive muscle weaker them effective, but we realized ness and swelling of vital organs. pretty quickly that we were going The condition is caused by a lack of to have to become medical experts the enzyme acid alpha-glucosidase about this on our own.” and makes it impossible for the Turning to the internet for body to break down glycogen, information about DMD and the molecule used to store enerdrugs that were being tested for gy from sugars. As a result, the treatment of it, Wood glycogen builds up frequented Clinicalin muscle tissues, Trials.gov, a regincluding the istry of ongoing THEY heart, where studies around HOLD OUT THIS it did in the world Atia, with organized CARROT. IF YOU deadly conby categosequences. ries such as STICK WITH IT, THEY’LL Accorddisease and EVENTUALLY LET ing to Jones, location. 28, the now Researching YOU GET THE 18-monthclinical trials old Atia’s based in Dallas DRUG… only chance for and elsewhere, she survival is continued began pursuing studaccess to an experimental ies for patients with DMD treatment with the drug Lumicaused by the same nonsense zyme through the ongoing enmutation that Matthew has. zyme replacement therapy (ERT) Wood educated herself on poclinical trial at Cooks Children’s. tential treatments in various stages Researchers hope it will slow the of research, including heart mediprogression of the disease. cations and steroid treatments “Our bottom line is that if there used with some success on other wasn’t a clinical trial, we wouldn’t DMD patients. She took Matthew have access to this drug and it would to a renowned DMD specialist in mean certain death. That would be Cincinnati and sought a prescripit,” says the Fort Worth mom. tion for ataluren, marketed in the United Kingdom as Translarna by GOING IT ALONE PTC Therapeutics, Inc. and not Unfortunately, things didn’t fall available in the United States. into place quite as seamlessly for THE WAITING GAME Matthew. Wood says she learned Matthew had to wait “four terrible pretty early after the diagnosis years” to gain access to ataluren. that they were on their own.
There are a number of resources to turn to, to find clinical trials in the Dallas-Fort Worth area. Here, a few places to check. They say at CHILDREN’S HEALTH that research is a way of life. In conjunction with the University of Texas Southwestern Medical Center, current research focuses on sickle cell disease, psychiatry and more. Find more information by searching “Children’s Health” on clinicaltrials.gov. Dallas, 214/456-7000; Plano, 469/303-7000 Follow the link on COOK CHILDREN’S website under “Specialty Services” then “Clinical Research”
Roadblocks included being too young for a study, then being too late — a study was already underway — and finally, receiving a placebo once he finally qualified. “You have to stay with a [placebo-based trial] for 46 weeks even if you’re getting worse and know you’re not receiving the treatment you were hoping for,” Wood bemoans. “It’s extremely frustrating. … They hold out this carrot. If you stick with it, they’ll eventually let you get the drug by putting you in an extension study.” Now Matthew, 14, takes ataluren in a powder form dissolved into a bowl of applesauce, three times a day, “and it has helped him a lot,” she says. This long and frustrating process that Wood finds herself in is not unusual. The Food and Drug Administration’s approval process requires testing and retesting potential treatments — drug companies conduct four phases, which typically last years, of clinical studies in the slow march to marketability and FDA approval. “I understand that they have to test drugs for safety as well as efficacy, and they want to make sure there aren’t any dangerous side effects,” Wood says. “But from where I sit, testing a drug for 10 years seems a little insane. A lot of people are dying from the disease during this time, and if there’s a drug out there that could be helping them and significantly improving people’s lives, at some point, they’ve got to move forward and save lives.” During a congressional hearing in March, Janet Woodcock, the FDA’s director of the Center for
to find a list of their current clinical trials. Fort Worth, 682/885-7491; cookchildrens.org To find a list of current research trials underway at MEDICAL CITY CHILDREN’S HOSPITAL, visit clinicaltrials.gov and type “Medical City Children’s Hospital” into the search bar. Dallas, 972/566-6060 Or go straight to the source. You can search clinicaltrials.gov by your child’s condition. A recent search in the Dallas-Fort Worth area, for instance, yielded open studies for autism, cerebral palsy and epilepsy, among others.
Drug Evaluation and Research (CDER) said the FDA is trying to shorten approval times by working with drug companies to help them plan their clinical trials to yield the best scientific results and shorten the drug development phase. And while FDA press officer Sally Walsh was unable to comment specifically on the timelines for medications such as ataluren, she did point out that another drug for the treatment of DMD, eteplirsen or Exondys 51, recently received “accelerated approval,” granting earlier patient access while the manufacturer conducts additional clinical trials to verify the predicted benefit. The term “accelerated approval” makes for a happy headline, but Walsh explains that drug development is conducted by the drug manufacturers, and their timelines vary widely. “And even under the best circumstances, accelerated approval may lead to decisions that are not verified upon further examination,” Walsh explains. According to the FDA, 70 percent of drugs generally move from Phase I, which only seeks to determine a drug’s toxicity, to Phase II, where the drug’s efficacy is tested. That percentage falls dramatically after that. Only about 33 percent of drugs make it to Phase III, which includes testing hundreds or thousands of patients. And Phase IV trials occur after a drug has achieved FDA approval and vary drastically based on what specifically the FDA wants to test or prove about a treatment. FINANCIAL ROADBLOCKS
It costs about $2.6 billion to develop a drug and win approval from the FDA, according to a 2014 report from the Tufts Center for the Study of Drug Development. Thankfully, federal law requires most health insurance plans to cover routine patient care costs in clinical trials, assuming the study is approved, the patient is eligible and the trial doesn’t involve outof-network doctors or hospitals. Atia currently receives biweekly intravenous infusions of
Lumizyme, of kids in the which her near future insurance but also for covers. generations,” Her mom, Bird explains. however, “[They’re] notes that incredibly OUR BOT TOM the toddler important for showed betchanging the LINE IS THAT IF ter muscuface of how lar control we deal with THERE WASN’T A when she some of these received diseases we’re CLINICAL TRIAL, weekly trying to treat.” WE WOULDN’T doses, but Parents insurance like Wood HAVE ACCESS TO won’t cover and Jones can the expense THIS DRUG AND IT appreciate of the more this, that these frequent clinical trials WOULD MEAN dose may pave an because the easier path for CERTAIN DEATH. FDA’s rectreatment for ommended other children guideline diagnosed limits the with DMD dosage to 20 milligrams per or Pompe, respectively. But for killigram of body weight every now, they view these experimentwo weeks. tal drugs and treatments as the “We’ve been really grateful to potential magic potion to probe able to participate in the clinilonging life for their children. cal trial and get this treatment,” Yet some clinical trial drugs Jones says. And Atia is doing may prove to have harmful side well. She can’t walk due to her effects down the road. inability to lift the front part of So parents have to weigh the her foot, a symptom of Pompe, benefits against the risks of adbut it doesn’t bother the toddler, verse side effects of the treatments who still seems intent to try. they agree to — some known, Jones, however, is still underothers undiscovered. standably frustrated. “It’s scary “Everything comes with risks when you can’t get the weekly and drawbacks,” Wood says. dosage of something you believe “That’s just part of this. It’s a real your child needs because it’s still interesting process for parents to considered experimental.” figure out what you’re willing to do and what you’re willing to live LOOKING AHEAD with as a result of getting on these Doctors look at clinical studies as a different drugs.” way to expand medical knowledge. Matthew has taken growth An essential part of the clinical hormones and steroids, the trial process revolves around data only FDA-approved treatments collection and the idea that parcurrently at his disposal, and ticipants’ responses to treatment endured side effects like osteowith an experimental drug will be porosis and delayed puberty compiled and shared by researchalong the way. His mom signed ers so they can determine effective him up for both the heart mediand safe doses for future use on cine and steroid clinical trials patients with the same condition, she found, he’s taking ataluren, or others. and they travel each year to Bird calls this aspect of trials Florida to participate in a study the “global footprint.” that measures muscle function “What we learn from these with MRIs rather than painful trials can really affect the lives muscle biopsies.
For now, Wood says she’s grateful that Matthew’s disease hasn’t progressed as far as it has for other DMD patients the family knows. Her son can still walk (he uses a power scooter at school, “his safety bubble,” his mom says). But she also stays vigilant in her pursuit of news about other investigational drugs she finds on ClinicalTrials. gov. She believes she must, in order to “fight for [Matthew] and give him the chance at a longer life.” t
Doctor Approval Before enrolling your child in a clinical trial, talk to your child’s doctor. A physician can provide background information that may help you make a more educated decision about participation. They may also be able to help you obtain insurance coverage or financial aid. You should also get answers to the following questions before signing up: 1. Why do researchers believe the intervention might be effective? 2. What are all the possible interventions my child might receive during the study? 3. How will it be determined which interventions my child receives? 4. What are the possible risks and side effects? 5. How often will we have to make hospital or clinic visits? 6. How long will the study last? 7. Who pays for participation? 8. What does follow-up care look like? 9. If my child benefits from the trial, will he continue to receive it even after the trial ends? 10. Who will oversee my child’s care during the study? thrive
PLAY PLAY FOR ALL FOR ALL
E USIV IN CL S IN K PAR FORT A SA D LL R TH WO
WORDS JESSICA MYERS
ALLAN SHIVERS PARK, DALLAS
What makes it special: Located at the Texas Scottish Rite Hospital for Children, this wheelchair-accessible playground features a padded rubber surface and lots of sensorystimulating stations. Encourage kids to move between levels using a fireman pole and hydraulic platform or hide in a cocoon when they need a break. Other park perks: There are several covered pavilions with ceiling fans, water fountains and a restroom with changing tables. Good to know: Call ahead; the park is sometimes closed for special hospital events. Location: 2222 Welborn St., Dallas. 214/559-5000; tsrhc.org
ALISON HARDIN PLAYGROUND AT THE JO KELLY SCHOOL, FORT WORTH Hope Park, Frisco
What makes it special: Designed for the medically fragile students at
Jo Kelly School, this playground is open to the public after school and on weekends. Try the wheelchair swing that allows a child to soar without having to get out of the chair. Other park perks: A shaded path leads to slides, rock climbing walls and more. Good to know: Park on a residential street and follow the paved sidewalk to the park. Location: 201 N. Bailey Ave., Fort Worth, on the corner of White Settlement Road and Linden Lane. 817/8155900; fwisd.org/JoKelly
AL RUSCHHAUPT PARK, MCKINNEY
What makes it special: Four tree house-themed landings with slides and sensory-friendly puzzles are connected via ramps and transfer points (places where kids can safely get on and off the structure). Tiered spinners keep kiddos on the AstroTurf busy. And two adaptive swings are located in a wood-chipped lot adjacent to the playground. Other park perks: Play in one of
PHOTOS COURTESY OF FRISCO PARKS & RECREATION; CITY OF ALLEN; TEXAS SCOTTISH RITE HOSPITAL FOR CHILDREN; JESSICA MYERS
The world is not necessarily a child with a disabilityâ€™s playground. But thanks to federal requirements, play structures built or renovated after 2012 must include equipment, materials and designs that provide children with disabilities the same play opportunities as their typical peers. And the Dallas-Fort Worth area is home to several of these colorful, whimsical, all-inclusive play sets that feature ramps, therapeutic swings, wheelchair-accessible gliders, smooth surfacing, retreat zones for overstimulated kiddos and more. Here, some of our favorites.
Allan Shivers Park, Dallas
the rubber-surfaced soccer, lacrosse or football fields or just cool off in the park’s spray ground. Good to know: There’s a concession stand, water fountains and restrooms. Location: 2708 N. Brook Drive, McKinney, immediately west of the 96-acre soccer complex and along the Wilson Creek greenbelt. 972/547-2687; mckinneyparks.org
CASEY’S CLUBHOUSE AT DOVE PARK, GRAPEVINE
What makes it special: Wheelchair users easily maneuver around this play space’s foam surface to head to the seesaw glider or the two supported swings. The clubhouse is home to a sensory station with pictures that make sounds when touched. Other park perks: There are three slides, a 3-foot-high zip line and misting dolphins. Good to know: Other amenities include a partially shaded spray ground. Location: 1509 Hood Lane, Grapevine, on the corner of Hood Lane and Dove Road across from Dove Elementary School. 817/410-3450; playgrapevine.com
CHILDSPLAY AT BACHMAN LAKE, DALLAS
What makes it special: Watch flights land at Love Field just across the water. Swing on the wheelchairaccessible glider, bounce on a Southwest Airlines spring-loaded airplane or walk through the discovery garden exploring scented plants, textured leaves and flowering shrubs. Other park perks: Two slides, a chain ladder and a lake frequented by ducks keep kids entertained. Good to know: There is a restroom, water fountains and a 3mile paved trail that is partially under construction.
Location: 2755 Bachman Drive, Dallas, next to Bachman Therapeutic Recreation Center. 214/670-1923; dallasparks.org
COTTONWOOD CREEK PARK, IRVING
What makes it special: Long ramps and wider play decks make for easy movement and wheelchair access to the 6-foot-tall spiral slide. Games on the ground include sensory panels with racecars, gears and tic-tac-toe. Plus, there are two harnessed swings and rock climbing walls. Other park perks: Navigate the paved paths around two ponds (less than a mile total) to fish or feed the ducks. This park also has restrooms. Good to know: Register kiddos age 3 and older to play inclusive baseball for free for the Miracle League (their rubber-surfaced ball field is next to the park) through the Irving YMCA. Location: 4051 N. Story Road, Irving. Turn into the large parking lot off North Story Road. 972/721-2600; cityofirving.org/parks
FANTASY LANDING AT KIEST PARK, DALLAS
What makes it special: The playground offers shade, smooth paths and three play structures easily accessed via ramps or low transfer stations. Other park perks: The accessible play area for older kids (ages 5–12) has five slides and four swings. The 250-acre park is home to 16 tennis courts, two basketball courts, a sand volleyball court, four baseball and softball fields and 10 soccer fields. Good to know: Water fountains and restrooms, which have changing tables, are located across the parking lot inside the Kiest Park Fieldhouse, which is closed on Sundays.
Location: 2185 Perryton Drive, Dallas, adjacent to the tennis court complex on the north side of Kiest Park. 214/670-4100; dallasparks.org
HOPE PARK, FRISCO
What makes it special: Set kids loose to cruise ramps, slides and tunnels. Let them ride the non-staticproducing steel slides, specially designed for children with cochlear implants; soar on adaptive swings; spin on a merry-go-round with seat supports; and explore sensory walls. Other park perks: Little ones become ticket sellers, ice cream vendors, even Frito-Lay truck drivers in the fairground-themed playhouses. Other structures include a four-seated seesaw, climbing wall and sandbox. Good to know: Frisco Commons Park also has an accessible spray ground (opens May 15) with restrooms, pavilions, picnic tables, a stocked pond and paved trails. Location: 8000 McKinney Road, inside Frisco Commons adjacent to Friendship Park. 972/292-6500; friscofun.org
KIDMANIA AT CELEBRATION PARK, ALLEN
What makes it special: KidMania features over a dozen climbing structures connected by wheelchairaccessible ramps. Let kids get lost in the maze of tunnels and educational panels or reach new heights on the therapeutic swings. Other park perks: Kids can climb a rock wall and cool off at the accessible adjoining spray ground (closed on Wednesdays). There are on-site
restrooms and water fountains. Good to know: The park doesn’t offer much shade, so take advantage of the trails, four tennis courts, two basketball courts and a complex of lacrosse, baseball and soccer fields in the morning. Location: 701 Angel Parkway, Allen. Turn in to the parking lot off Angel Parkway. 214/509-4700; allenparks.org
MARY HEADS CARTER PARK, CARROLLTON
What makes it special: Kids can run or roll across the synthetic, grass-like surface to hop on features such as the accessible merry-go-round, adaptive swings or pirate ship that rocks. Ramps lead to racing slides and educational stations — kids can learn to fingerspell using the American Sign Language alphabet board. Other park perks: There are tunnels, rock climbing walls and web-like cables. Good to know: The park has restrooms and water fountains too. Location: 2320 Heads Lane, Carrollton, near Kelly Boulevard and Keller Springs Road. 972/4663000; cityofcarrollton.com
PATRICIA LEBLANC PARK, FORT WORTH
What makes it special: The twostory playground features multiple landings and slides and a sensoryfriendly zone. Kids move from climbing walls and tire swings to drum sets and adaptive swings. Other park perks: There’s also a spring-loaded dinosaur ride and an inclusive merry-go-round. Good to know: The dedicated rest area in the parking lot includes two clean port-a-potties and a water fountain. Location: 6300 Granbury Cut Off St., Fort Worth, off Granbury Road next to Oakmont Elementary School. 817/392-5700; fortworthtexas.gov t thrive
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SPECIAL ADVERTISING SECTION
June 5th through August 25th
830 Parker Square Rd. Flower Mound, TX 75028 972-410-5297 www.abc-pediatrics.com
Our Summer camp program is an inclusive program with a responsive, developmentally appropriate approach to child growth and learning. We provide individualized attention to support each child’s emerging communication and learning skills. We work on communication, sensory integration, social relatedness, gross and fine motor development, play and self-help skills.
C A MP G U I D E
We are offering a 10-week long SUMMER CAMP that will include social skills groups, early start and school readiness programs. Using a unique curriculum, developed by The Behavior Exchange, experienced behavior trainers use ABA therapy techniques to engage students in fun learning activities that enhance their individual behavior goals and socials skills. Two Locations: Plano 6105 Windcom Court, Ste. 400 Plano, TX 75093 Frisco 8501 Wade Blvd., Ste #330 Frisco, TX 75034 www.behaviorexchange.com
Our camps will focus on: • Communication • School Readiness • Group Participation • Social Skills OUR PROGRAM IS COVERED BY INSURANCE IN MOST CASES.
D AY & O V E R N I G H T C A M P S / C L A S S E S / S P O R T S
Camp Summit is a one-of-a-kind camp for children and adults with disabilities where the emphasis is on the campers’ abilities rather than their disabilities. Traditional camp activities are adapted to each individual and are provided in our barrier-free facilities and implemented by trained, caring staff. Our campers are grouped by age, providing the opportunity to make friends within peer groups while having fun and experiencing new adventures. 270 Private Rd. 3475 Paradise, TX 76073 972-484-8900 firstname.lastname@example.org www.campsummittx.org
Camp Summit is located just north of DFW on 460 beautiful acres of land. We are accredited by the American Camp Association and licensed as a Youth Camp in the State of Texas.
Eat • Talk • Play With Us This Summer At
Frisco Feeding & Speech Therapy There is no reason for your child to fall behind this summer! We build on the progress your child made throughout the school year to ensure they are prepared in the fall.
Frisco Feeding & Speech Therapy 5000 Eldorado Pkwy, Ste. 150-170 Frisco, TX 75033 469-630-2328 www.friscofeedingslp.com
We offer the following pediatric therapy services: • Speech – Language Therapy • Comprehensive Evaluations • Social Skill Groups (4–6 & 7–10 yrs) • Feeding Therapy Our skilled therapists will develop a personalized program targeting your child’s speech and language needs. Summer is the perfect time to focus on fundamental skills needed for academic success.
Margherita Flatbread Feature Four Brownie Sundae Buffalo Chicken Pizza Coconut Chicken Tenders
Giving back tastes so good. Order one of our chef-inspired menu items marked with the SMG Chefs for Children badge and SMG will donate 5% of the proceeds to non-profits in your community serving Special Needs Children.
Pediatric Home Health Speech, Occupational & Physical Therapy Serving Children Ages: 0–21
Terapia de Lenguaje, Ocupacional y Física
• Highly Experienced Clinical Team • Specialized Feeding Program • Achieving your child’s greatest potential • Ethical Practices Our therapists create a fun and nurturing therapy experience for children with special needs. Serving the greater DFW area
Se Habla Español
P L AY
WORDS ELIZABETH SMITH
things to do in may & june
Reaching Your Stride
Fort Worth, 605/342-0266 striderbikes.com/events/ special-needs
If riding a bike is your child’s ambition, don’t miss the Strider Cup on Saturday, May 6, exclusively with Strider brand no-pedal balance bikes, which are lightweight and designed for easy maneuvering. Register online in advance to join the special needs races through Sundance Square from 11:30am–12:30pm. Don’t have a Strider bike? Loaner bikes and helmets are available first come, first served. Free.
Playing It Cool
Life’s Better at the Lake Head to the North Texas Expo Tour at Grapevine’s Oak Grove Park on June 17 when Christian nonprofit Access-Life brings a boatload of free activities for those of all ages living with disabilities. Register online to join the boat rides across Lake Grapevine, adaptive sports such as kayaking and archery, and more from 10am–2pm. Grapevine, 352/455-9926 access-life.com/north-tx
Bring noisemakers and pompoms to cheer on thousands of statewide athletes competing in the Special Olympics Texas Summer
Slip into your suits during AquaStars, Irving’s open swim times exclusively for kids with special needs. Monthly sessions continue on May 14 at the Heritage Aquatic Center indoor pool ($1.50 adults; $1 kids), and on June 10 switch over to West Irving Aquatic Center’s mini outdoor water park ($3 adults; $2 kids). Both locations are equipped with chair lifts, zero-depth pool entry and access to waterproof wheelchairs.
Games at the University of Texas at Arlington. Opening ceremonies begin at 7pm on Friday, May 26, at UTA’s Maverick Stadium,
Irving, 972/721-2501; cityofirving.org Photos courtesy of Strider Bikes; Access-Life, Inc.; City of Irving; David Alvey
Fans in the Stands
and competitions in basketball, gym-
For more events tailored to you, check the Special Needs Friendly option on our online calendar at dfwchild.com/ calendar.
Hawaii by Proxy
nastics and more run through May 28.
Book your flight, er, road trip, to the nearest Hawaiian Falls Waterpark for Champions Day. On Friday, June 23, (and Saturday, August 5), all four North Texas locations — Garland, The Colony, Mansfield and Roanoke — open from 8:30–10am with free admission for kids with special needs and $10 each for family members (up to four). Then stay to play all day, or until you’re sufficiently waterlogged.
Register online for your free spectator ticket or sign up to volunteer as a family. Arlington, 817/332-3433 sotx.org/ summergames
Multiple locations, 972/999-1625; hfalls.com/championsday thrive
WE KNOW SHOPPING FOR RESOURCES PROBABLY ISN’T AT THE TOP of your day-off to-do list, so we’ve packed this handy directory with as many local support groups, recreational activities and respite programs in Dallas-Fort Worth as we could find. Didn’t come across what you’re looking for? Visit dfwchild.com/thrive/directory for an expansive database of local special needs resources in our online Thrive directory. Search by service or condition for the inside scoop on everything from specialty schools to government agencies and advocacy groups. If you know of something we missed, or have an idea for a new listing, send your recommendations to email@example.com.
28 add & adhd 28 advocacy 28 asperger’s & autism 28 celiac disease 28 cerebral palsy 28 child care 29 cystic fibrosis 29 developmental disabilities 29 down syndrome 29 dyslexia 29 epilepsy 29 equestrian therapy 30 fragile x 30 hearing impaired 30 helpline 30 mental illness 30 muscular dystrophy 30 obsessive- compulsive 30 recreation 31 respite care 32 sibling classes 32 tourette’s syndrome 32 vision impaired
ADD & ADHD
Attention Deficit Disorders Association (ADDA) Southern Region Mesquite, 972/882-7519; adda-sr. org. Support group meets every other month during the school year (the second Tuesday of the month in February, April, September and November) at the Mesquite ISD Professional Development Center. Children and Adults with Attention Deficit/Hyperactivity Disorder (CHADD) ntxchadd.com. Works to educate and empower others with information about ADD/ADHD by providing parents with tools and information to help their child reach his or her full potential. Farmers Branch support group meets the third Wednesday of each month from 6–7:30pm in the Farmers Branch Library Conference Room. Call 469/767-6866 for more information. Tarrant County support group meets the fourth Monday of each month from 7–9pm; call 817/7076264 for more information.
ADAPT of Texas Austin, 512/4420252; adapt.org. National grassroots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities. Disability Rights Texas Dallas, 214/630-0916; disabilityrightstx.org. Nonprofit organization that works on the state and community levels to protect and advocate for the legal rights of people with disabilities in Texas. The group provides
legal services to people with developmental disabilities and mental illness. Family and Youth Involvement Initiative Statewide, 512/944-9972; texasfederationoffamilies.org. Works to provide family-to-family support in the community, serving the needs of children with mental, emotional and behavioral health challenges. Federation for Children with Special Needs Nationwide, 617/236-7210; fcsn.org. Provides information, support and assistance to parents of children with disabilities, their professional partners and their communities. National Organization for Rare Disorders (NORD) Nationwide, 800/999-6673; rarediseases. org. Provides information about rare diseases through its publication and website. NORD also administers copay assistance programs, earlyaccess programs that allow patients with serious or life-threatening diseases to access investigational products under certain conditions, and travel assistance programs. Partners Resource Network (TX) Statewide, 800/866-4726; partnerstx.org. Nonprofit agency that assists families of children with all types of disabilities. Special Needs Assistance Partners (SNAP) Grapevine, 817/5459456; ntxsnap.org. Advocates for people with cognitive disabilities. Creates and supports a variety of programs that assist individuals 17 and older living with intellectual disabilities in achieving and sustaining full lives. Texans Care for Children Statewide, 512/473-2274; texanscareforchildren.org. Nonprofit organization that seeks to improve the well-being of Texas children through advocacy, child-serving agencies, public outreach and other resources.
ASPERGER’S & AUTISM
Autism Speaks Nationwide, 888/288-4762; autismspeaks.org. The nation’s largest autism science and advocacy organization. Offers resources, support and advocacy for families in the autism community while increasing awareness of autism spectrum disorders.
Families for Effective Autism Treatment (FEAT-NT) Richland Hills, 817/919-2228; featnt.org. Provides resources, support, education and advocacy for families in the autism community. National Autism Association of North Texas Plano, 214/925-2722; naa-nt.org. Seeks to increase public awareness about daily issues, to advocate for appropriate services and to provide the latest information about autism. Our Children’s Circle McKinney, occ.deltos.com. Support group of parents, educators and community leaders that strives to provide resources for parents of children with autism spectrum disorders. Coffee and Conversation events for parents meet monthly from 9:30–11:30am. To contact the group, visit the website and email the president.
Gluten Intolerance Group of Greater Dallas Dallas, 214/6321878; dfwceliac.org. Nonprofit organization devoted to sharing and providing information to help those with celiac disease. Group meets from 10am–12pm the third Saturday of every month. Gluten Intolerance Group of North Texas North Richland Hills, 817/3193282; northtexasgig.com. Supports those living with gluten intolerance diseases by increasing awareness, providing up-to-date information and education, and hosting kids’ camps and support group meetings the first Saturday of the month.
Ability Connection Texas Statewide, 800/999-1898; abilityconnectiontexas.org. Offers a variety of programs to ensure that people with cerebral palsy and similar disabilities have the opportunity to participate fully and equally in all aspects of society. United Cerebral Palsy Nationwide, 800/872-5827; ucp.org. One of the largest health charities in America whose mission is to advance independence, productivity and full citizenship of people with disabilities through an affiliate network.
Achievement Center of Texas Garland, 972/414-7700; achievementcenteroftexas.org. Day habilitation center for children and adults with disabilities
or other special needs. Also offers arts exploration, educational assistance and community inclusion. Brighter Day Academy Dallas, 214/265-8585; brighterdayacademy. com. Fully inclusive day care for nonaggressive children with special needs ages 0–12. Medications and breathing treatments can be given on-site if necessary. Children with special needs accepted case by case. BrightStar Care Dallas, 214/2954667; brightstarcare.com. Offers care for high-functioning children with special needs and autism. Availability of services is evaluated on a case-by-case basis. Clubhouse for Special Needs, The Bedford, 817/285-0885; theclubhouse.org. After-school programs, school holiday programs, summer programs and all-day programs for teens and young adults (ages 13–22) with special needs. Easter Seals North Texas Child Development Center Grapevine, 972/939-3909; ntx.easterseals.com. Provides a preschool program for children with autism ages 18 months to 6 years. KinderFrogs School at TCU Fort Worth, 817/257-6828; kinderfrogs. tcu.edu. Early childhood program (ages 18 months–6 years) designed to accommodate children with Down syndrome and other developmental delays. Mary’s House Dalworthington Gardens, 817/459-4494; maryshouseinc. org. Provides before- and afterschool care (Monday–Friday), day habilitation, activities and therapeutic options for teens ages 13 and older and adults with disabilities. Mom’s Best Friend Carrollton, 972/446-0500; momsbestfriend.com. The nanny agency and babysitter service provides referrals for in-home care for children of all ages with special needs throughout the Dallas-Fort Worth area. Our Children’s House at Irving Irving, 972/790-8505; childrens.com/ och. Licensed child development program, day care and academy for pediatric therapy that serves children ages 6 weeks to 5 years with special needs and their siblings.
Blue Caboose Children’s Fund Dallas, 469/338-7695; blueca-
boose4cf.org. Provides back-toschool assistance, a Christmas toy drive and a community parent network for the families of children with cystic fibrosis. The adults-only support group meets on the second Monday of each month at La Madeleine on Mockingbird Lane. Cystic Fibrosis Foundation Nationwide, 800/344-4823; Dallas, 214/8712222; Fort Worth, 817/249-7744. cff. org. Works to cure and control cystic fibrosis and to improve the quality of life for those with the disease.
Arc of Texas, The Statewide, 512/454-6694; thearcoftexas.org. Chapters in Dallas, Denton and Tarrant counties provide services and support for people with intellectual and developmental disabilities. Dallas FASD Support Group Richardson. Support group for parents of children and adults with fetal alcohol spectrum disorder. Meets the fourth Monday of every month (except December) from 7–8:30pm at Council of Families for Children; email firstname.lastname@example.org for more information. Denton County MHMR Center Denton, 940/381-5000; dentonmhmr.org. Provides services to individuals with mental and behavioral health care needs. Easter Seals North Texas Fort Worth, 888/617-7171; ntx.easterseals.com. Centers in Dallas, Carrollton, Fort Worth and Grapevine provide services including outpatient rehabilitation, personal assistance, autism programs and respite care for children and adults with disabilities and other special needs. Jewish Family Service Dallas, 972/437-9950; jfsdallas.org. Offers a support group for parents, and provides extensive services for children with special needs and their parents and siblings, including assessment of abilities and needs, diagnostic testing, counseling, play therapy, social skills groups and school consultation. MHMR of Tarrant County Fort Worth, 817/569-4300; mhmrtarrant.org. Provides services to individuals with behavioral health care needs, intellectual and developmental disabilities and substance abuse disorders.
Down Syndrome Guild of Dallas Richardson, 214/267-1374; downsyndromedallas.org. Provides accurate and current information, resources and support for people with Down syndrome, their families and the community. Down Syndrome Partnership of North Texas Fort Worth, 817/390-2970; dspnt.org. Provides information, social and educational activities and events and support for new parents, families and caregivers of those with Down syndrome.
Decoding Dyslexia Texas Statewide, decodingdyslexiatx.org. Grass-roots movement driven by Texas families concerned with the limited access to educational interventions for dyslexia. The group aims to expand the public conversation about dyslexia and increase the awareness of dyslexia and the need for appropriate remediation services in all Texas schools. Visit their Facebook page. Impacting Dyslexia Education Awareness (IDEAS) Plano, ideasplano.org. Promotes awareness and connects parents, caretakers and teachers with resources and information to aid children with dyslexia. Visit their Facebook page. International Dyslexia Association – Dallas Branch Dallas, 972/2339107; dallasida.org. Nonprofit, scientific and educational organization dedicated to the study and treatment of dyslexia. The Dallas branch provides information and resources concerning learning differences to parents, educators, professionals and anyone who wants to be more informed about dyslexia. The group meets on the second Monday of each month (except July). Discussion topics change monthly; check the website for the meeting topic and location.
Epilepsy Foundation Texas Addison, 214/420-2737; eftx.org. Nonprofit organization that strives to improve the lives of children and adults with epilepsy.
Blue Sky Therapeutic Riding & Respite Krugerville, 469/459-9594; blueskytexas.org. Provides a safe, happy and healthy therapeutic community that works to empower and
propel citizens with special needs to their fullest potential through therapeutic horseback riding and respite, vocational and entrepreneurial opportunities. Born 2 Be Therapeutic Equestrian Center Aubrey, 940/595-8200; born2betec.org. Dedicated to safe and affordable horseback riding for children with disabilities through small-group or private lessons. Riders have the opportunity to participate in the Texas Special Olympics and in exhibitions, including the Chisholm Challenge for Special Riders Horse Show held in Fort Worth each January. Equest Dallas, 972/412-1099; equest.org. Works with riders to develop independent skills that carry over to their everyday lives. Riders are encouraged to set individual goals ranging from holding the reins for one full circuit of the arena to more complex challenges, such as qualifying for and competing in the international arena. Grace Lake Ministries, Inc. Anna, 972/837-4621; gracelakeministries. org. God-centered therapeutic riding program with the goal of developing wholeness in the lives of the people served. Riders include anyone in need of hope and healing, including children and adults with disabilities or social challenges. ManeGait McKinney, 469/422-6374; manegait.org. Provides a fun, enriching and supportive environment for riders to reach their potential. Offers group, semi-private or private lessons taught by certified riding instructors with the assistance of volunteer aides. As much as possible, riders participate in pre-mounted and post-mounted horse care. Riding Unlimited Inc. Ponder, 940/479-2016; ridingunlimited.org. Provides small-group and individual lessons for ages 3 to adult. Students can participate in exhibition and drill teams, Special Olympics equestrian events, and shows like the Chisholm Challenge for Special Riders Horse Show. Stable Strides Farm Therapeutic Riding Flower Mound, 214/6160870; stablestridesfarm.org. Children and adults ages 2 and older with physical or cognitive disabilities learn to become effective, competitive riders. Students are encouraged to ride independently
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directory as soon and as safely as possible. Riders participate in the Special Olympics and other competitions and shows. Unbridled Horse Therapy Flower Mound, 469/319-2599; unbridledhorsetherapy.com. Aims to effectively intercede and encourage unrealized potential for those with special needs and disabilities through the connection between horse and rider and the use of physical, speech and behavioral therapy.
Saturday, May 20 Reverchon Park Take Steps for Crohn’s & Colitis is the national walk for the Crohn’s & Colitis Foundation. You can make a difference. When you walk, you’ll help raise funds for cures! To learn more about Take Steps, call Amelia Avery at 972-3860607 x4, or email her at aavery@ crohnscolitisfoundation.org.
FRAXA Research Foundation Nationwide, 978/462-1866; fraxa.org. The national nonprofit’s mission is to push progress for more effective treatments and a cure for Fragile X. The Dallas chapter provides referrals and information on local resources. Texas Fragile X Association Dallas, 972/7578939; txfx.org. An association made up of families and professionals who provide resources and education on Fragile X issues. They organize family activities and education events throughout the year.
Dallas Hearing Foundation Dallas, 972/4247711; dallashearingfoundation.org. Nonprofit foundation dedicated to giving the gifts of hearing and speech to children and adults with hearing loss through surgical treatment, hearing technologies, rehabilitation and educational support to those in financial need. Deaf-Blind Multihandicapped Association of Texas (DBMAT) Dallas, 972/285-5912; dbmat-tx.org. The mission of DBMAT is to promote and improve the quality of life for all Texans who are deaf-blind multi-handicapped, deaf multi-handicapped and blind multi-handicapped.
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2-1-1 Texas: Finding Help in Texas Statewide, 211; 211texas.org. Free, anonymous and confidential information and referral line answered by nationally certified specialists 24 hours a day, seven days a week. When callers dial 211, they are connected to information centers in their region.
Mental Health America of Greater Dallas Dallas, 214/871-2420; mhadallas.org. Works to stop the stigma around mental illness and build awareness of mental health issues while providing resources from established providers in the community. Offers multiple support groups at varying times. National Alliance on Mental Illness Texas Dallas, 512/693-2000; namitexas.org. Provides support and education to families and friends of people with serious mental illness.
FACES of North Texas 800/714-5437; parentprojectmd.org. Families Advocating, Connecting, Educating and Supporting is the parent-led outreach initiative of Parent Project Muscular Dystrophy. FACES provides mentor-
take-steps-dfw-child-magazine-third-page-ad-final.indd 14/6/17 12:38 PM
ing, support and advocacy to families living with muscular dystrophy. Muscular Dystrophy Association Nationwide, 800/572-1717; mda.org. Offices and clinics in Dallas and Fort Worth provide medical services and research into muscular dystrophy and related neuromuscular diseases.
OCD and Anxiety Support Group DFW Bedford, ocdsupportgroupdfw.wordpress. com. Support group for families and friends of individuals with OCD and other anxiety disorders. Meets on the second and fourth Thursday of each month (except on holidays) from 6:30–8pm at Texas Health Harris Methodist Hospital Hurst-Euless-Bedford. OCD Texas Statewide, 214/906-1692; ocdtexas. org. Nonprofit support and advocacy organization that brings together people with OCD, their families and researchers across Texas. Visit the website for local contacts.
Angel League Baseball Program Rockwall, 972/722-6001; angelleague.org. Baseball program for boys and girls with physical or mental disabilities ages 4–15 and adult league for individuals with mental disabilities ages 16–60. Aqua-Fit Swim & Fitness Family Wellness Center Plano, 972/578-7946; aquafitplano.com. Aqua-Fit’s Mimi Conner offers swimming lessons for adults and children with special needs on Saturday and Monday. Aqua-Tots Swim School Multiple locations, 214/771-3133; aqua-tots.com/locations/usa/ texas. Offers the basic survival swim program and a beginning stroke development class for children with special needs. ASI Gymnastics Multiple locations, asigymnastics.com. Offers Gymmie Kids, a recreational gymnastics program designed to enhance motor skills, provide social interaction and build the self-esteem of children with special needs. Bachman Recreation Center Dallas, 214/6706266; dallasparks.org/facilities. Provides an accessible facility for all individuals ages 6 and older with disabilities. Best Buddies Statewide, 214/242-9908; bestbuddies.org. Provides opportunities for one-to-one friendships, integrating people with disabilities into their communities. Buddy League Garland, 972/414-9280; buddyleague.org. Provides recreational opportunities for children with special needs, allowing children with disabilities to learn baseball with their typical peers, or “buddies.” Buddy Sports at Cross Timbers YMCA Flower Mound, 972/539-9622; crosstimbersymca. org. Specialized program for athletes ages 5–15 with learning and physical disabilities. Athletes meet once a week on Sunday afternoon to have fun, exercise and be part of a team in an understanding atmosphere. The sport changes every 6–7 weeks.
Emler Swim School Multiple locations, 817/552-7946; emlerswimschool.com. Teaches the lifesaving skill of swimming to children with special needs in a fun, positive environment. Especially Needed McKinney, 214/499-3439; especiallyneeded.org. Builds a strong sense of unity for individuals with special needs by offering family-friendly events throughout the year. Express Cheer Multiple locations, 972/7315888; expresscheer.com. Offers a cheerleading team for children with special needs. The Feast Dallas, 214/521-3111; hpumc.org. Worship service at Highland Park United Methodist Church that is a welcome place for those with special needs, their families and friends, and all who have a heart for special needs. The Feast takes place on Sundays at 5pm.
educational classes and a day program. Young adults with special needs work at Soaring Eagle Thrift Store to gain life skills. Southwest Wheelchair Athletic Association Multiple locations, swaasports.org. Provides wheelchair sled hockey, fencing, track and other sports for people with disabilities. Special Needs Gymnastics Multiple locations, 806/438-3227; specialneedsgymnastics.com. Coaches work individually and in groups with students of all ages and skill levels who have disabilities to help athletes achieve success.
Keller ATA Martial Arts Keller, 817/337-9493; kellerata.com. Offers classes for children with special needs and participates in tournaments that offer divisions for special abilities competitors. Instructors have experience working with students with autism, Down syndrome, cerebral palsy and other conditions.
Wet Zone Waterpark Angel Swim Rowlett, 972/412-6266; rowlett.com/parksandrec. Open swim for members of the community with special needs and their families during summer months.
Miracle League of DFW Arlington, 817/7336076; mldfw.org. Provides an opportunity for children with physical or mental challenges to play baseball. Miracle League of Frisco Frisco, 214/2956411; friscomiracleleague.org. Offers a variety of sports for children with special needs, with attainable goals set and assistance provided by a buddy or volunteer. Miracle League of Irving Irving, 972/986-8898; irvingymca.org. Provides children with disabilities ages 3 and up the opportunity to play baseball, regardless of their ability level. The spring season runs March–June, and the fall season runs September–November. RISE Adaptive Sports Irving, 469/762-5075; riseadaptivesports.org. Promotes independence for individuals with physical disabilities through sports, recreation and other outdoor events and programs. Soaring Eagle Center DeSoto, 972/223-1873; soaringeaglecenter.org. Serves young adults with developmental disabilities and their families through Special Olympics, social activities,
The Rise School of Dallas at the Moody Family YMCA is an NAEYC-accredited preschool serving children
with and without special needs in an inclusive environment for ages 6 months to 6 years.
Texas Cutez Lewisville, 469/233-2882; texascutez.com. Serves children with special needs of all ages and abilities as they learn and make friends on a cheerleading team. TOPS Soccer Arlington, 817/229-0629. Free soccer program for ages 5–25 with special or adaptive needs. Fall league includes Saturday games and two groups (ages 5–12 and 13–15). Each player receives a uniform and end-ofseason trophy. Visit their Facebook page.
Special Olympics Texas Statewide, 512/8359873; sotx.org. Provides year-round sports training and athletic competition in a variety of sports for children and adults with intellectual disabilities.
Grisham Farms Therapy Zoo McKinney, 214/544-7255; grishamfarms.com. Safe, private place for children and adults with special needs to learn about and spend time with all types of animals.
Metroplex Adaptive Water Sports Dallas, 214/803-9955; youcanski.org. Nonprofit organization dedicated to providing opportunities for persons with all types of disabilities to experience water sports.
The Rise School
Student-to-staff ratio 3–4:1 + Occupational, Speech, Physical and Music Therapy in the classroom setting + Educational assessment + Year-round schedule + Full day program 8:00a–2:30p + YMCA after-care available 2:30–5:30p 6000 Preston Rd., Dallas 75205 214-526-7293 // www.risedallas.org
YMCA of Metropolitan Dallas Multiple locations, 214/880-9622; ymcadallas.org. Puts Christian values into practice through programs that build a healthy spirit, mind and body for all. Various club locations offer camps, swimming lessons and sports programs for kids with special needs.
Adventure Kids Playcare Multiple locations, adventurekidsplaycare.com. Offers hourly dropin child care that is inclusive to children with special needs.
“When fear was edging out hope, St. Timothy’s wonderful ministry was the answer we needed.”
APT G: A Place to Go Allen, 214/385-8850; fumcallen.org. Free monthly respite night for children with special needs in grades six and up. Held the third Saturday of each month (September–May) from 7–9:30pm. Register online by the Wednesday before. Breakaway – Special Needs Ministry Fort Worth, 817/546-0876; ccbcfamily.org. Free respite night for children with special needs (ages infant to 21 years) and siblings (ages infant to 12 years) 10 nights per year. Registration is on a first-come, first-served basis. Bryan’s Buddies Grapevine, 817/488-9141; firstmethodistgrapevine.org. Monthly respite care for children with special needs and their siblings held at First United Methodist Church. Bryan’s House Dallas, 214/559-3946; bryanshouse.org. Provides respite care, child care and
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Challenge Air Dallas, 214/351-3353; challengeair.com. Offers motivational and inspirational aviation experiences to children and youth with physical challenges.
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Calab, Inc. Multiple locations, 972/263-2112; calabinc.com. Provides quality individualized child care that encourages independence in individuals with disabilities.
Parents’ Night Out Allen, 972/727-8241; fbcallen.org. Respite program with music, games, movies and snacks for grade school-age children and their siblings one night a month during the school year at First Baptist Church Allen. Reservations required.
Emma’s House. Irving, 972/839-1502; emmashouse.net. Provides functional, vocational and life skills to promote independence and self-sufficiency for teens and young adults with disabilities. After-school and summer programming is also available.
Respite Care at Irving Bible Church Irving, 972/560-4613; irvingbible.org. Respite night one Saturday a month for children with special needs from 5:30–8:30pm. Reservations required.
Friday Night Fun at Lake Pointe Church Rockwall, 469/698-2310; lpkids.com/rockwall. Monthly parents night out for children with special needs (6 months–13 years) and their siblings from 6–9pm. Register in advance. SOAR, the special needs ministry, also offers programs and respite care for older children and adults.
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Friday NITE Friends Plano, 972/618-3450; fridaynitefriends.org. Respite program for families with special needs and medically fragile children (ages birth–15 years) and their siblings (up to 12 years) on Friday evening from 6–10pm.
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Gary’s Angels Plano, 214/291-8024; standrewumc.org. Sensory activities, a quiet room and Sunday school activities for children with special needs and their siblings at St. Andrew UMC.
Harvey’s Kids Carrollton, 972/492-2432; hcumc.org. Arts and crafts, food and other activities for children with special needs and their siblings every second Saturday of the month from 5–8pm. Reservations required. Kids Night Out Plano, 972/941-7272; plano. gov/408/Adapted-Recreation. Respite night for children ages 1–10 with special needs and their siblings; meets monthly (except June and July) at Liberty Recreation Center from 6:30–9:30pm on the second Friday of each month. Reservations required.
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Loving Hands Ministry Coppell, 972/462-0471; fumccoppell.org. Respite care for children with special needs and their siblings up to age 10 one Saturday a month. A registered nurse will be on hand to offer support while the children engage in various activities.
Friday night of each month at Highland Park United Methodist Church.
Night Lights Dallas, 214/706-9535; raysoflightdallas.org. Children with special needs ages 6 months–18 years and their siblings enjoy arts and crafts, computer games, live entertainment and more at this free respite night from 6–10pm every first, second and third Friday of the month (except January and July) at the Lovers Lane United Methodist Church. Free respite care for Spanish-speaking families provided on the third Friday of every month at the Christ Foundry United Methodist Mission from 6–10pm. Registration required. Night OWLS Dallas, 214/523-2284; hpumc.org/ night-owls. Respite program for children ages 3 months to 13 years with identified special needs and their siblings on the first and third
Cook’s Children Sib2Sib Program Fort Worth, 682/885-5872; cookchildrens.org. Free program for siblings of patients with a chronic illness or a life-changing injury. Workshops use crafts and games to encourage open communication. A group for ages 5–7 meets quarterly and a group for ages 8–12 meets every other month; there are occasional events for teens. FEAT-North Texas Sibshops Richland Hills, 817/919-2228; featnt.org. Sibshop held on Saturdays for four weeks at the FEAT-NT Resource Center and Library. Library books on sibling issues, autism and a range of other disabilities and related topics are available for parents and children to check out. HEROES Sibshops Richardson, heroesdfw. org. Program for the siblings of children with disabilities to participate in fun and exciting activities in a safe environment.
North Texas Tourette Syndrome Support Group Irving, 281/238-8096; tourettetexas.org/ dallas-northtexas. Serves North Texas families with Tourette’s syndrome and its associated disorders. Visit the website and contact the group leader for meeting times. Tourette Syndrome Association of Texas Richmond, 281/238-8096; tourettetexas.org. Raises funds to directly assist Texas families and children in crisis, 24 hours a day, 365 days a year.
American Foundation for the Blind Dallas, 214/352-7222; afb.org. Provides information and referrals to blind and visually impaired persons and their families. Dallas Lighthouse for the Blind Dallas, 214/821-2375; dallaslighthouse.org. Nonprofit organization that focuses on improving and enhancing the lives and opportunities for individuals with visual impairments in North Texas. Texas Workforce Commission Dallas, 800/6877017; twc.state.tx.us. Works with Texans who are blind or visually impaired to help them get high-quality jobs and live independently. Prevent Blindness Texas Dallas, 214/5285521; preventblindnesstexas.org. Dedicated to preventing blindness and preserving sight for all Texans through vision screenings, education and free voucher programs.
SPECIAL ADVERTISING SECTION
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life goes on
f you have a medically fragile child or one fighting a chronic illness, you spend a lot of time in hospital rooms, and you’re familiar with the chair. The chair isn’t just a place to sit, it signifies so much more than the square footage it occupies. For the days, weeks, months or more that your child remains in the hospital, the chair is your workstation; your breakfast, lunch and dinner seat; your bed; and your prison. I am sitting again in the local hospital for the 32nd time in three years. Nick remains a medical mystery to the entire medical community, and the puzzle pieces involved continue to become more complex. Upon admittance, he was diagnosed with pneumonia, then they added sepsis, which extended our stay — and my sentence to the chair. So here I sit watching the rainbow of scrubs-wearing personnel enter and exit, fill orders, check vitals then repeat. By now, I know the nurses by name — and Nick does too; he signs each of their names — and we’ve become regular patients of the specialists treating Nick. We are back on the sixth floor, but we have a new room this time. Of the 36 rooms on this floor, Nick has been an occupant in 26 of them. He gets excited when we add a new one to the list of beds he’s been in. He knows which ones he prefers, which have the best views and which ones he’s hoping never to go back to. For me, the rooms are the same. The chairs are all the same. They may have a different
Take a Seat WORDS JOSH SCHILLING ILLUSTRATION MARY DUNN
orientation in the room, but that’s it, so I assume my post. The hospitalist, a physician whose primary focus is the general medical care of hospitalized patients, enters the room. This person sees my child the least but seems to hold the most power, doling out signatures for consults, medications and discharge forms. The hospitalist is, my friends, my worst nightmare as the parent of a disabled adult child. The hospitalist literally comes in for maybe 5–10
minutes a day and looks at me like I have two heads and am speaking a foreign language when I ask questions or voice concerns. When he’s in the room, it’s obvious that the chair exacerbates my limitations. He sees me as nothing more than a worried parent. I may not have a medical degree, but I’ve been caring for my son for several years now. I know which drugs need to be administered through an IV and how much to give and how to hep lock
“So here I sit watching the rainbow of scrubs-wearing personnel enter and exit, fill orders, check vitals then repeat.”
a central line, among lots of other things. The nurses and techs that serve Nick around the clock, on the other hand, allow me to relax — dare I say, get comfortable in the chair? Thank God for them. I breathe better when they’re in the room and release my tense grip on the chair’s armrests. These men and women humanize a hospital stay. They pop in just to say hi and they genuinely care about my son. From where I sit, these are the most important people in the room, aside from Nick, of course. It’s when I am awaiting test results and follow-ups that I hate the chair the most. It’s almost like the place I’ve been sent to for a timeout. Each passing minute feels like an eternity. I pray the test results produce answers. Tell me why Nick’s health continues to decline, why he gets worse instead of better. With each hospital admittance, I come in with such high expectations, that this time, the doctors will be able to pinpoint the cause of Nick’s health woes, and every time, I meet disappointment; the doctors just don’t know. I actually hope that there aren’t too many readers who can relate to my relationship with the hospital room chair. For those of you who can, I know that you sit and you wait and you watch your incredibly strong children fight. And from where you sit, you do everything you can to protect, care for and love them. Thankfully, these seats are on wheels, so you roll up right next to the bed to comfort and hold your child and sit for awhile.
Pediatric Nursing and Therapy
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