thrive DALL AS-FORT WORTH
VOL. 9 ISSUE NO. 4
JULY/ AUGUST 2017
A RESOURCE FOR FAMILIES LIVING WITH LEARNING DIFFERENCES AND SPECIAL NEEDS
VIRTUAL VISITS TO THE THERAPIST
MUST-HAVE SPECIAL NEEDS RESOURCES
MEET KATIE & PALMER
THE MODERN EVE FOUNDER AND DAUGHTER
SUMMER FUN! 12 ACTIVITIES FOR ALL ABILITIES
THE CANNABIS DILEMMA
SOME PARENTS ARE BREAKING THE LAW TO FIND RELIEF FOR THEIR KIDS WITH AUTISM
Your child’s care should be
nothing less than epic Epic Health Services is Texas’ leading pediatric care continuum provider The Epic Health Services family of companies provides a pediatric care continuum, including private duty skilled nursing, therapy, developmental services, and home medical solutions, including enteral nutrition, respiratory, specialty pharmacy, and medical supplies to medically fragile children across the United States. By maintaining a focus on the highest quality care, extraordinary customer service, and compliance, Epic Health Services operates as the largest comprehensive pediatric care continuum provider, helping patients navigate through all stages of life and health. Contact us today, and let us take your family from “surviving” to “thriving!” HEALTH SERVICES: Full-service in-home care Private duty skilled nursing
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Short- and long-term care available 24/7 live on-call client service coordinators MEDICAL SOLUTIONS: Enteral nutrition Specialty pharmacy Medical supplies (incontinence, ostomy, urological, diabetic, ketogenic)
To learn more about the services provided and find a location in your area, please visit our websites below.
epichealthservices.com | epicpediatrictherapy.com | epicmedicalsolutions.com HEALTH SERVICES PEDIATRIC THERAPY DEVELOPMENTAL SERVICES MEDICAL SOLUTIONS © 2017 Epic Health Services, Inc.
VOL. 9 NO. 4
16 NATURALLY CONTROVERSIAL
For some Texas families with kids who
self-injure, medical cannabis is the only answer to help their children. words C.C. Malloy illustrations John J. Custer
departments TAKE NOTE
5 On Call 6 Speak Easy 6 Hey Mickey 6 Special Needs, Special Living
20 FUN FOR ALL
All-inclusive spots to get out and play words Jessica Myers
9 Mom Next Door: Katie Anderson 12 Superfoods To Go 12 Sound Advice: Feeling Stretched 12 Give It a Twirl 14 Mommy Diary: Vanessa Avila
27 5 Things To Do in July & August
staff box Joylyn Niebes
Creative Director Lauren Niebes
EXECUTIVE EDITOR Wendy Manwarren Generes MANAGING EDITOR Carrie Steingruber
THE MODERN EVE FOUNDER AND DAUGHTER
SUMMER FUN! 12 ACTIVITIES FOR ALL ABILITIES
THE CANNABIS DILEMMA
SOME PARENTS ARE BREAKING THE LAW TO FIND RELIEF FOR THEIR KIDS WITH AUTISM
Correction: In the “Testing … One, Two, Three” article in the May/June 2017 issue, we incorrectly abbreviated Duchenne muscular dystrophy as MDM. It’s actually DMD.
ASSISTANT EDITORS Nicole Crites, Jessica Myers
EDITORIAL DESIGNER Katie Garza
ADVERTISING COORDINATOR Amy Klembara
RESEARCH EDITOR Beth McGee
CALENDAR EDITOR Elizabeth Smith
GRAPHIC DESIGNER Susan Horn
MEET KATIE & PALMER
PHOTOGRAPHY Carter Rose
29 Directory of Special Needs Resources
JULY/ AUGUST 2017
A RESOURCE FOR FAMILIES LIVING WITH LEARNING DIFFERENCES AND SPECIAL NEEDS
VIRTUAL VISITS TO THE THERAPIST
MUST-HAVE SPECIAL NEEDS RESOURCES
34 Life Goes On words Josh Schilling
thrive DAL L AS-F O R T WO R TH
VOL. 9 ISSUE NO. 4
ASSOCIATE PUBLISHER Diana Whitworth Nelson ACCOUNT EXECUTIVES Nancy Crosbie, Nikki Garrett, Stacy Howton, Nancy McDaniel, Susanne Nachazel, Kristen Niebes, Sandi Tijerina, Kerensa Vest
AUDIENCE DEVELOPMENT DIRECTOR Candace Emerson
BUSINESS MANAGER Leah Wagner OFFICE MANAGER + DISTRIBUTION Robbie Scott
DFWThrive is published six times a year by Lauren Publications, Inc. Address: 4275 Kellway Circle, Ste. 146, Addison, TX, 75001. Phone: 972/447-9188. Fax: 972/447-0633. Online: dfwchild.com/Thrive. DFWThrive is distributed free of charge, one copy per reader. Only DFWThrive authorized distributors may deliver or pick up the magazines. We reserve the right to edit, reject or comment editorially on all material contributed. We cannot be responsible for the return of any unsolicited material. DFWThrive is ©2017 by Lauren Publications, Inc. All rights reserved. Reproduction in whole or part without express written permission prohibited.
the doctor is in (your living room) and can see you now WORDS LADAWN FLETCHER
magine this: Your child’s speech therapy session starts in 30 minutes. But instead of running around, loading the car and desperately trying to make it there on time, you settle in on the sofa with your son or daughter minutes before the session’s supposed to begin and click on the link that takes you to a secure site and opens up a portal. From here, the comfort of home, your child will have their hourlong session with the speech therapist. This isn’t the future of science. It’s reality. Telemedicine connects health care providers and patients via computer or smartphone for diagnosis and treatment. Children’s Health in Dallas has been providing telehealth services to over 100 local schools in Dallas, Collin and Tarrant counties for a couple of years now, equipping nurses with high-definition videoconferencing and digital scopes so doctors from Children’s Health pediatric group can diagnose virtually, even write electronic prescriptions. “Technology is the most efficient way for us to deliver our expertise to children no matter where they are — at home or school,” says Julie Hall-Barrow, vice president of virtual health and innovation at Children’s Health. And this anywhere-and-everywhere idea is gaining traction in other areas of treatment too, like therapies, which Children’s Health is currently exploring.
Aiden Kenny, now 9, lives in Keller and started specialized therapy when he was just 4 months old. The only caveat? The weekly auditory verbal therapy (AVT), designed to prepare the infant and his entire family for the cochlear implants he received just before his first birthday, was a two-hour drive away. (The family lived in Ohio at the time.) But the therapist offered a lifeline: He would perform the therapies virtually if the family would be his telehealth guinea pigs, so to speak. Fast-forward nearly a decade, and a University of Iowa study published late last year in the journal Pediatrics shows that children with special needs, and especially those on the autism spectrum, may greatly benefit from telehealth services. That’s because the therapies and appointments can take place in a child’s home without disruption to their routine and in a space where they feel safe. Telehealth as a whole is a field that is growing at a rapid pace. In 2014, about $17 billion was invested in the industry. That number is projected to more than double by 2020. That means as many as 300 million doctor and therapist visits
would take place virtually every year. And so more doctors and therapists are starting to offer virtual services now. Google “Dallas-Fort Worth therapist videocouseling,” and you get several options already. One being Dr. Anthony Bean, a psychologist who runs Bean Professional Psychological Services in Fort Worth. He’s been offering videocounseling services to his clients — many of them adolescents on the spectrum — for almost two years. He’s definitely a fan but is quick to point out that diagnosing and treating patients virtually is not without its limitations. “It’s a practice that takes some getting used to,” he says. “When I sit with a patient in a room, I can feel the energy and my intuition is keener. When my patient is on the other side of a webcam, I have to work harder, ask more clarifying questions. It’s not impossible; it just requires more effort.” There’s also the issue with insurance: Most providers don’t cover out-of-office therapy sessions — yet. Bean’s clients pay out of pocket for the virtual services he offers. (He charges $125 for a 45-minute session.) But that’s likely to change over the next few years as virtual health continues to grow. In fact, some insurance companies are already beginning to cover in-network virtual visits for minor health concerns such as allergies. But virtual visits can be extremely beneficial for conditions beyond common ailments. Bean says the practice is especially helpful for his patients on the low end of the autism spectrum, those battling depression and those with anxiety. Plus, teletherapy sessions make treatment a family affair. Aiden is set to begin speech therapy, and while the family is no longer far from specialists and therapists, they know that allowing Aiden to have his therapies at home, with the entire family present, makes it that much easier for everyone to better support him. “In many ways [teletherapy] is more effective,” says Tammy Kenny, Aiden’s mom. “We did the therapy in his playroom, with his toys. He moved around instead of being in a chair.” Kenny says the teletherapy setup is more enjoyable for Aiden and empowering for her. “In actuality, it put me more in charge because the therapist wasn’t sitting right there. I became better for Aiden.”
When my patient is on the other side of a webcam, I have to work harder.”
HEY MICKEY If taking your crew to “the most magical place on earth” seems like wishful thinking, locally based Crazy Imagination Travel can help you make that pipe dream a reality. The authorized Disney vacation planner provides free travel expertise for families, including those with special needs. Request
While there are plenty of speech therapy apps out there, there are not a lot specifically designed for kids younger than 5. Speech Blubs is a new app that targets late-talking and nonverbal toddlers, letting these little ones explore oral motor movements by watching other kids. Here’s how it works: The child chooses an animal (from
22 options) and watches videos of other children making that animal sound. Next, the camera turns on them and they’re encouraged to imitate that sound while they watch themselves as, say, a pig (they get the snout and all). The app is free, but the animals will cost you — $6.99 for the menagerie or 99 cents per animal. —Nicole Crites
Speech Blubs by Blub Blub // Free to download on iOS and Android // blubblub.org
to work with a member of Taylor’s Team, a group of agents trained on-site at Disney World to help visitors with cognitive, hearing, mobility and vision impairments. During one-on-one consultations over coffee or by phone, your agent helps you take advantage of Disney’s special needs resources, book lodging and tickets, create a step-by-step itinerary, navigate FastPasses and even snag dinner reservations at Cinderella’s Royal Table.
Special Needs, Special Living
—Beth McGee Crazy Imagination Travel 817/307-9906 crazyimaginationtravel.com
There’s a demand for living communities for adults with special needs. Dallas couple Clay Heighten and Debra Caudy are spearheading the development of a Denton community for people with autism, and in May, Daymark Living broke ground in Waxahachie on North Texas’ first residential community specifically designed for adults with intellectual and developmental disabilities. The company is building 28 cottages to house nearly 200 residents ages 18 and older in apartmentstyle living. Public areas like the pool and dining hall aim to improve social skills, and classes in personal finance, technology and other topics promote greater independence and cognitive growth. Monthly expenses are expected to average $3,500 for rent and utilities, groceries, transportation, entertainment and classes; call or email to start the application process. —N.C. thrive
Photos courtesy of Blub Blub; Daymark Living; Illustration by Katie Garza
Daymark Living 816 Cantrell St., Waxahachie 972/525-2727 daymarkliving.com
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
Helping families sleep soundly
At the Pediatric Sleep Institute, we understand that a sleep or neurological disorder of a child affects the entire family. Our team of board-certified specialists provide a comprehensive evaluation of Neurology and Sleep and Wake Disorders in children ages newborn to 18 years of age. For those requiring an over-night sleep study, we offer five child-friendly rooms equipped with a second bed for a caregiver to spend the night. Talk with your physician about a referral to the Pediatric Sleep Institute. We look forward to helping your family sleep soundly.
pediatric sleep institute A Department of Texas Health Center for Diagnostics & Surgery
phone (214) 778-3000 fax (972) 419-8190 PediatricSleepInstitute.com
At the Pediatric Sleep Institute, children with special needs such as developmental delays/ intellectual disability, and neurodevelopmental disabilities are tested in a warm and caring atmosphere. Medical conditions which may require a sleep study include:
ADHD Asthma Cardiac disease Depression/anxiety Diabetes Down syndrome GERD Hypertension Hypertrophy of tonsils Obesity Pulmonary artery hypertension Seizure disorder Sickle Cell Anemia
Texas Health Center for Diagnostics & Surgery is a licensed physician-owned hospital as defined by Federal Law. The hospital is affiliated with, but not controlled by Texas Health Resources or its subsidiaries. Some of the physicians on the medical staff own a financial interest in the facility. Physicians on the medical staff who provide services operate as independent medical service providers.
Mom Next Door
Lake Highlands mom of two girls: Beckett, 3 and Palmer, 8 months. “I started to meet other bloggers across the country and on social media, and it just evolved.” Blogging is a far departure from Anderson’s planned career path. After graduating from Southern Methodist University, she studied biblical counseling at Dallas Theological Seminary but never used the degree vocationally. She opted instead to use her corner of the web to muse on everything from wellness and beauty to home decor and fashion. And she had a talent for it. Her voice resonated and her following grew. “I love curating things and researching,” she says. “I love finding beauty in everything, whether it’s fashion or food.”
Katie Anderson WORDS NICOLE JORDAN PHOTOGRAPHY CARTER ROSE
ore than a decade ago, Pinterest and Instagram didn’t exist and the blogosphere was just gaining steam. Katie Anderson, 33, one of the first to successfully spin blogging into a career, was settling in to marriage with her husband Dave (they’ve now been married for 10 years) and launching her online journal, Modern Eve. “I didn’t even tell anyone I had a blog back then because it was so embarrassing,” says the
Eleven years later, Modern Eve’s content has changed considerably. Along with posts featuring tablescape inspirations and trend reports, you’ll now find thoughts on motherhood and mommy-and-me style. In honor of World Down Syndrome Day this past March, Anderson wrote a tribute to other parents of children with Down syndrome. “The hard stuff may chart our course, but I will not let it define our destination,” she wrote. Anderson had little familiarity with Down syndrome just a year ago, but it’s a topic she’s come to know well since Palmer’s birth. Her pregnancy was typical and the birth went according to plan, but she realized quickly after that something was amiss.
“I didn’t want our whole life to revolve around our kids. I intentionally carve out time for Dave and I.”
ABOVE / Katie Anderson — with her husband, Dave, and their girls, Palmer, 8 months, and Beckett, 3 — keeps her plate very full as a wife, mother, blogger and part-time operations manager but always finds some time to carve out for herself.
Family Care Clinic Family Practice specializing in the diagnosis and treatment of ADHD Dr. Laws, being diagnosed in medical school with ADHD, has real passion for treating ADHD. He works with your child’s individual needs and can help with a child’s struggles in school, organization, discipline, and learning styles.
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Verbatim, the doctor’s words were: “There are signs that lead me to believe she has Down syndrome.” Anderson’s response? “OK. We can handle that.” “I instantly felt very protective of her,” Anderson says. “I couldn’t stop thinking about her relationships and imagining her being rejected because she was different. I worried she might not have the sister relationship with Beckett that I dreamed of. I was terrified that if other people believed she was less valuable because of Down syndrome she might believe it too.” These feelings persist. But while Anderson admits there have been struggles, she says she “hasn’t dealt with anger or denial.” There was no mourning period. “There are little things I’ll grieve about her whole life,” she says. “But this is who she is — and she is valuable and worthy and I love her regardless.” If anything, it’s been a catalyst for personal growth, shaping Anderson into the type of woman she aspires to be. “My heart is more sensitive, empathetic and inclusive,” she says. “It’s helped me see value in all people in a way I didn’t even realize I needed. That has been a huge blessing.” She’d like to use her experiences as fodder for her blog, which she hopes to evolve into a space that holds thoughts on faith, motherhood and day-today struggles. But it can be hard to find time to write. Anderson works part-time with her husband, helping with the operations of his remodeling company. Beckett goes to school three days a week (and Palmer will start at Rise School of Dallas in August), but most of this mom’s days are a blur: Work, playdate, naptime, therapy. Repeat. “It’s a lot of juggling,” she says. “But that works for me. It’s kind of messy and I’m OK with that.” As a family, the Andersons can often be found at the Perot Museum of Nature and Science, where they’re members, the Dallas Museum of Art and Klyde Warren Park.
In Anderson’s precious free time, she likes to surf the web, search for inspiration on Pinterest, shop and read parenting articles. She prioritizes time with girlfriends — dinner, brunch, sometimes just a quick drink. And she’s not afraid to try new things. She’s dabbled in weaving, watercolor painting and sewing. She loves yoga, though she isn’t able to practice as much as she’d like. Anderson’s held tightly to her identity outside of mom, a decision she made before becoming pregnant with Beckett. “I didn’t want my entire identity to become Mom,” she says. “And I didn’t want our whole life to revolve around our kids. I intentionally carve out time for Dave and I.” A graduate student from Dallas Theological Seminary helps with the girls, so she and her husband can squeeze in the occasional date night. True Food Kitchen and AmberJax Fish Market Grille are favorite spots, but Anderson’s happiest when trying somewhere new. “I could go to a new restaurant every Friday and Saturday night and be content,” she says. But really, the destination is trivial. Wherever they end up, the couple’s focus is on reconnecting, something they’ve made a priority since Beckett was born and emphasized even more since Palmer’s arrival. Having a child with special needs can undoubtedly put strain on a marriage, but Anderson says she and Dave are “on the same page.” They’re teammates. “We’re very different,” she says. “He’s the silly guy and I’m the disciplinarian, but somehow it works.” The couple hopes to grow their brood by at least one, if not more. Reflecting on motherhood, Anderson likens it to having a mirror on you at all times. “It makes me think, ‘Am I prioritizing things in my life that are in line with what I want to be about?’” she says. “I don’t want my daughters to get caught up in comparisons. I want them to be confident in their own skin and bodies, to pursue their dreams and passions.” t
Home & Community based ABA Therapy Family-centered services with a focus on quality of life
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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). ©
rm: H E L P Sound Advice Feeling Stretched
superfoods to go It’s not easy being green — that is, chopping and blending produce every morning to make healthy smoothies. Fortunately, Daily Harvest smoothies has streamlined the prep-chop-blend process for families with tight schedules and diet restrictions. Daily Harvest sends weekly packages of single-serving recyclable cups with pre-portioned
ingredients; just add almond milk or coconut water and blend (for smoothies) or broth and heat in the microwave (for soups). Each cup is gluten-, dairy- and soy-free and uses mostly organic ingredients so you don’t have to worry about additives, preservatives or members of the Dirty Dozen creeping in to your child’s breakfast or lunch. Subscribe for up to 12 cups per week. We did, and we love the new blueberry, fig and hemp smoothie that tastes like blueberry pie. —Jessica Myers
give it a twirl
Shannon Thomas, LCSW, is the owner and lead therapist of Southlake Christian Counseling and best-selling author of Healing from Hidden Abuse: A Journey Through the Stages of Recovery from Psychological Abuse. Visit shannonthomas.com.
Coloring may be one of the hottest trends in stress relief, but it’s not the only childhood activity that can help busy parents unwind. “Doing things that are playful like coloring or dancing can help activate the part of the brain that brings about relaxation,” says Dr. Jennifer Baggerly, a professor of counseling at the University of North Texas at Dallas. If dance was your thing as a child, check out adult classes in ballet, jazz and more. Contemporary Ballet Dallas’ beginner, intermediate and advanced classes are ongoing, so drop in to a session, or sign up for an eight-week basics series. Denton Dance Conservatory also offers six-week sessions for beginners or ongoing drop-in classes for more experienced dancers. And in Fort Worth, Dance Connection has evening classes for all experience levels. —Nicole Crites
Contemporary Ballet Dallas, adult classes from $20 // 5400 E. Mockingbird Lane, Suite 207, Dallas // 214/821-2066 // contemporaryballetdallas.com Denton Dance Conservatory, adult classes from $70 per month // 4103 Mesa Drive, Denton // 940/383-2623 // dentondance.com Dance Connection, adult classes from $15 // 5519 S. Hulen St., Fort Worth // 817/292-3703 // danceconnection-fw.com
Photos courtesy of Daily Harvest Smoothies; ©iStock.com/FatCamera; Illustration by Mary Dunn
Daily Harvest Smoothies, from $6.99 per cup daily-harvest.com
How much is too much? For most of us, we know we’ve been stretched too far when anxiety, tears or anger appears. Knowing our personal capacity is vital to our well-being. Capacity is like an internal rubber band — we stretch for our demands until we snap in different ways. What if we saw it coming and took steps to prevent it? Try these three steps to keep your rubber band from stretching too far: 1. Notice what pulls on your patience. What small, practical steps can you take to make these moments less chaotic? 2. Are you getting enough rest? Sleep is like a bank account — the little deposits add up. If you can’t get a full night’s sleep, try to find 5–10 minutes during the day to rest. 3. Exercise doesn’t have to be in a gym. Set aside a couple of minutes for things as simple as stretching and breathing. Physical movement does so much for our bodies’ health. Making major life changes isn’t going to help us live within our capacity. It’s the small, almost unnoticeable adjustments that allow us to not feel stretched beyond what we can manage.
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A Day in the Life of VANESSA AVILA Vanessa Avila is the director of client reporting for McGowanGroup Asset Management, a financial services firm in Uptown. She and her husband, Micky, senior chemist for the city of Dallas, live in Lewisville with their 4-year-old son Nathan, who has autism, and their 1-year-old diva in training, Joslyn.
:20AM Our daughter starts to whine through the baby monitor. My husband leans over and sighs. She is sitting up. He gets out of bed to go lie with her so I can get a little more rest. 7:10AM I hear my son’s sweet babbling through the baby monitor. I pick it up and see him burying himself in his pillows. 7:20AM By the time I’ve washed up, my husband has already taken our son potty and has Mickey Mouse going in the playroom. I hand my son his cup of milk and smother him with kisses. My daughter crawls to me; I pick her up and smother her with kisses too. 7:30AM We drink our coffee while getting a breakfast snack going, and the kids play. 8:30AM After breakfast, it’s a crazy rush to get the kids dressed and out of the house for swim. 9:25AM We arrive at Emler for swim. Joslyn and Daddy are first. She loves the water. She is still unsure about going underwater, but is up to two seconds. I cheer her on while Nathan waits restlessly for his turn. 10AM Daddy starts drying and changing Joslyn while I take Nathan to his teacher for his turn. He excitedly gets in. He also loves the water. He has made so much progress since he started lessons last summer. He is swimming up to 14 feet and holding his breath for up to 10 Mississippis. (They are fast Mississippis, but he is still doing awesome.) 10:30AM Swim class is over and Nathan is tired, but he still has a huge
smile on his face. We get him changed and head to IHOP. 10:50AM We get seated and order our usual: buttermilk pancakes with chocolate chips in the batter for Nathan, breakfast platters for my husband and me. We give bits of egg and toast to Joslyn. It’s been a good morning. 11:45AM After breakfast we head to Walmart for our groceries. Ordering online and curbside pickup has seriously been a game-changer. 12PM We get the groceries unloaded and put away. Now it’s bathtime. We get them in the bath and all cleaned up and let them play. Joslyn starts splashing so Nathan starts splashing — which means bathtime is over! 12:15PM All dried off and dressed. It is time for Joslyn’s nap. I rock Joslyn to sleep, and, since she is a light sleeper, let her nap on me. I scroll through Facebook and play some word puzzles. My husband plays with Nathan and starts sorting laundry. 1:45PM Joslyn wakes from her nap with this adorable “What just happened?” expression. We go to the living room to join Dad and brother. Time to get lunch going. 2PM We get lunch on the table and Nathan signs for his iPad and points to the counter where we leave it. He is nonverbal, but he’s mastered that sign. We give the iPad to him and he watches his videos and happily chows down. Joslyn starts lunchtime in her booster seat but after 15 minutes is screaming to get out. Daddy holds her while I finish, then we switch off. 3PM After lunch, it’s time for Nathan to give his iPad a break. Since the weather is yucky out, Play-Doh it is! We sing (horribly off-key, but he still likes it) and he uses his stencils to carve out the numbers 1–10 in Play-Doh, just like his YouTube videos. We work on things like reinforcing eye contact and responding to his name. Joslyn goes back and forth from our laps to playing with her toys in the living room. 4PM Snack time. We give Nathan his choice of snack. He signs for cookie so he gets a cookie. We spend the rest of the afternoon playing with the kids and doing laundry. 5:30PM We start heating up dinner. This is a practiced dance of one of us in the kitchen and the other “walking” Joslyn around the kitchen, and then trading off. We get seated and Nathan signs for his iPad. Dinnertime is a deja vu of lunchtime. 6:30PM My husband starts getting Joslyn ready for bedtime. I finish in the
Photo Courtesy of Shawn Walther/Charisma Photography
rm: M O M M Y
Having Spina Bifida doesn’t stop us from just being kids. We Are Living #beyondlimits!
All About Vanessa
What she’s reading American Sniper (on audiobook) Where she goes for retail therapy LuLaRoe — I am so addicted! Favorite date night spot Chamberlain’s Fish Market Grill in Addison. They have this amazing goat cheese salad!
The Rise School
Beauty product she can’t live without ChapStick and mascara
What she does when life gets stressful Cry in the shower Dream vacation Disney World and Harry Potter in Florida with both sides of the extended family
Find out more about Camp TLC and the other programs we offer for persons with spina bifida at www.spinabifidant.org
She wishes she had more time to Sleep and get pampered (mani, pedi, facial, massage) Greatest fear Not having a good enough plan in place for the kids after I am gone
Support, Programs, Advocacy & Awareness Since 1973
Illustration by Katie Galasso
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 email@example.com. All submissions are subject to editing and may be cut for space.
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.
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
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972-238-8755 • firstname.lastname@example.org www.spinabifidant.org ©
kitchen and sit with Nathan while he finishes eating. My sweet boy takes his time. A few minutes later, Dad and Joslyn rejoin us. 6:50PM Joslyn reaches over for me; she is ready for bed. I grab her milk and her blankie and head to her room to rock her to sleep. 7:30PM Even though Nathan already had a bath, we keep his evening routine the same as on a weekday. Dad gives Nathan a shower, brushes his teeth, gets him dressed for bed and gives him his milk with melatonin. I lay Joslyn down and then head to Nathan’s room to lie down with him until he falls asleep. 8PM Now, it’s husband-and-wife time. I pick up toys so we can have a safe path for any middle-of-the-night walks. We eat ice cream and then snuggle in bed to watch a couple of episodes of Narcos. 9:30PM We get washed up for bed. Today was a good day. t
FOR SOME TEXAS FAMILIES
WITH KIDS WHO SELF-INJURE, MEDICAL CANNABIS IS THE ONLY ANSWER TO HELP THEIR CHILDREN. WORDS C.C. MALLOY I L LU S T R AT I O N S J O H N J. C U S T E R
ALKER MCCAIN, 22, WHO IS SEVERELY AUTISTIC, started his self-
injuring behavior when he was 5. At Sunday school in Carrollton, he would sit and repeatedly punch himself in the face. And it only got worse as he got older. He banged his head, pulled his hair and bit his hands so hard they bled. He eventually developed cauliflower ears, a deformity caused by blunt trauma and typically seen on wrestlers and boxers. Walker caused his by excessively slapping the sides of his head. Walker’s communication is limited. He’s basically nonverbal, so banging his head is how he gets attention. No one knows for sure what triggers this behavior, but it seems as though even simple changes in the weather can bring on his self-harming tendencies. And according to the U.S. Centers for Disease Control and Prevention, 28 percent of children with autism disorders are also self-injurers. Walker’s mom, Tracy McCain, 50, calls him “a toddler in a man’s suit,” which can be dangerous. Just like some toddlers, Walker expresses frustration with aggression, usually directed at himself, but he’s big and strong, and his mom worries he might unintentionally hurt someone else too. Managing his behavior has been a daily challenge that McCain has endured for nearly two decades. From the time her son was in kindergarten, McCain worked closely with Walker’s teachers. By 12, Walker’s behavior was deemed severe, and he risked being sent to a residential living facility. Some applied behavior techniques, like positive reinforcements, and a total reconditioning plan helped reduce the hitting but did not eliminate the self-injury. Now, 17 years later, the frustrated mom continues to meet with neurologists and behavioral specialists but none have found success C O N T I N U E D O N T H E N E X T PAG E
in ceasing Walker’s self-abuse. In that time, doctors have written over 30 prescriptions. Antipsychotic drugs risperidone and olanzapine, typically used for schizophrenia and bipolar disorder, provided temporary relief but wore off quickly. Both caused significant weight gain and caused Walker’s breasts to grow, so his mom weaned him off. She also tried antidepressants such as Prozac and a variety of seizure medications, but his behaviors and moods worsened. A CHECKERED PAST
Marijuana has a long and controversial history. For years, it was the biggest villain in America’s war on drugs because it was known as the gateway drug, a habit-forming drug that, while not addictive itself, may lead users to try — and subsequently get hooked on — other addictive drugs. On June 1, 2015, Gov. Greg Abbott signed Senate Bill 339, known as the Compassionate Use Act, which cracks the door for those who need medical marijuana in the state of Texas. The law goes into effect starting September 1 of this year. Under the new law, authorized doctors may prescribe low-THC cannabis that has 10 percent or more cannabidiol (CBD) — a cannabis compound with purported medical benefits — and not more than 0.5 percent THC, the psychoactive chemical in marijuana that gets people high. This law, however, only pertains to patients diagnosed with intractable epilepsy — a fancy term used to describe epilepsy that traditional medicine doesn’t seem to help — who have tried at least two FDA-approved seizure drugs that have proved to be ineffective. Dr. Scott Perry, medical director of neurology at Cook Children’s in Fort Worth, is in the process of conducting clinical trials for medical cannabis for children with tuberous sclerosis complex, a genetic
disorder that causes benign tumors to grow on organs such as the skin, kidneys and brain, potentially leading to seizures. These children may be able to get relief under the new law, but it’s leaving out plenty of others who are fighting for legal access to cannabis oil. For patients with severe autism, there is very little scientific research to go on, so it is, in fact, still illegal to use medical cannabis as a form of treatment for kids — or adults — with severe autism. SHARING STORIES
A couple of years ago, McCain, feeling completely defeated, decided to take matters into her own hands. She pored through studies, articles and stories online and came across a YouTube video featuring a boy with self-injuring tendencies that mirrored Walker’s. The boy in the video was being treated with wholeplant THC and CBD oil. The boy’s parents documented positive changes in his behavior using the cannabis. Really, there’s no shortage of anecdotal evidence online. Google “CBD and autism,” and the search results include pages and pages of blog posts and videos highlighting parents’ positive results using CBD oil as a form of treatment for their severely autistic children. One such video that appears on the first page of search results happens to belong to Richardson dad Mark Zartler. Earlier this year, he posted a video of himself treating his 17-year-old autistic daughter’s self-injurious behavior with vaporized marijuana. It went viral.
The anecdotal evidence McCain combed through on YouTube, Facebook and other social media platforms of autistic children helped by CBD oil sounded and looked very similar to the stories she read and heard of children with epilepsy who have responded positively to CBD. Alexis Bortell, 11, is one of them. She was born healthy, but at 7, she was diagnosed with rolandic epilepsy, which caused multiple seizures a day. For two years, Dean Bortell, Alexis’ dad, tried a range of FDA-approved drugs at the recommendation of different neurologists. But the seizures only seemed to get worse. And for elementaryage Alexis, having seizures at school, in front of her classmates, was scary and embarrassing. Not to mention, she wasn’t able to attend many birthday parties or sleepovers because the seizures at night were relentless. Then in 2014, CNN News aired Dr. Sanjay Gupta’s documentary Weed 2. It featured a child with severe seizures whose symptoms were seemingly reversed with CBD oil. Bortell was watching. In Colorado on business that same year, Bortell consulted a neurologist and two doctors, all of whom spoke about CBD oil and whole-plant cannabis and the potential to treat Alexis with it. Bortell tried medical cannabis on his daughter and noticed a reduction in seizures right away. The problem, however, was that Bortell and his family lived in Rowlett at the time, where doctors said brain surgery or Felbatol, a
drug with known liver failure risks, were potentially the only options after Alexis endured a particularly bad eight-minute seizure that intermittently stopped her breathing. Her doctor did mention that cannabis would likely be a lot safer. That was all Bortell needed to hear; he moved his family to Colorado. But relocation to Colorado or one of the 28 other states where medical marijuana is legal isn’t an option for most, including the McCains. RISK VS. REWARD
Even though Texas passed the Compassionate Use Act, which allows kids with epilepsy to use CBD oils, the law mandates that the level of THC be exceptionally low, almost nonexistent, which doesn’t help Alexis, who has been seizurefree for 700 days (as of press time) with a higher dose of THC. “Knowing what I know now,” Bortell says, “if all I had was illegal access [to Alexis’ medicine], I would still do it. It saved my daughter.” So is that the only answer for moms and dads with severely autistic children — to administer medical cannabis illegally? McCain started following Mothers Advocating Medical Marijuana for Autism (MAMMA), an online Facebook community started by Texas moms “who have children with autism and are interested in legally pursuing medical cannabis as a safe, effective and therapeutic treatment option for their kids.” Here, McCain has found lots of information and support. Because not all parents in Texas are as forthcoming as the Zartlers, who were reported to Child Protective Services (CPS) after their viral video made national headlines. Fearing incarceration or losing their children, lots of local parents keep quiet. Even so, McCain says she’s at the end of her rope. “Self-injury
“KNOWING WHAT I KNOW NOW, IF ALL I HAD WAS ILLEGAL ACCESS [TO ALEXIS’ MEDICINE], I WOULD STILL DO IT. IT SAVED MY DAUGHTER.”
“SELF-INJURY IS THE WORST THING I’VE EVER BEEN THROUGH AND TO WATCH MY GROWN SON BEAT HIS FACE IN, YES, [THE CONSEQUENCES WOULD BE WORTH IT].” is the worst thing I’ve ever been through and to watch my own son beat his face in, yes, [the consequences would be worth it].” Jessi French, a board-certified behavioral analyst with Crosspoint Autism Therapy in Plano, agrees. She works a lot with kids on the spectrum who self-injure. She understands the need for a better quality of life for these patients and supports whole-plant medical cannabis for the treatment of severe autism. French says keeping medical marijuana illegal actually makes it more dangerous, since well-meaning parents take matters into their own hands, potentially exposing their children to greater risks than the cannabis poses. She knows plenty of parents who order it online or visit less-thansafe neighborhoods in Dallas-Fort Worth to purchase it. She says she knows desperate parents who buy CBD oil labeled “dietary supplements” from a “head shop,” slang for a store that sells drug-related paraphernalia. “People have no idea what’s in that bottle, and parents should be careful about what they buy [and then give to their kids],” she warns. Perry says these over-theinternet supplements carry unknown risks: How do they affect a child’s cognition? How do they interact with other medications? “None of these supplements have been rigorously tested so while they may be safe, we don’t have research to prove that,” he explains. “There is no standardization or oversight on quality [of these products].” Cecilia McCoy, whose name has been changed, understands the dangers but opts to treat her 10-year-old son, who suffers from epilepsy with continuous spikes and waves during slow-wave sleep (not covered under the Compassionate Use Act), with CBD oil she purchases online anyway.
Her son’s seizures started when he was 5. Three neurologists and trial-and-error treatments brought no relief. He missed school constantly and by second grade was already two grade levels behind in reading and math. The Collin County mom took her son’s chronic condition into her own hands. Online, she found other parents dealing with the same diagnosis, some using CBD oil with success. She brought her findings to her son’s doctor, who dismissed the idea, even refused to discuss it because of the legal ramifications that could be brought against him. In March 2015, she placed her first online order — on the recommendation of another parent in her virtual community — from Bluegrass Hemp Oil (formerly Kentucky Cannabis Company): a supplement derived from highCBD and low-THC hemp plants. (The less than 0.3 percent THC means it’s legal to ship it across state lines.) “Parents might be able to buy it legally online but are still shooting in the dark as to what will be a beneficial dosage,” French cautions. Since McCoy hasn’t found a doctor to support her chosen treatment for her son, she takes dosing recommendations from the botanist at the dispensing company. She administers it to her son through a syringe two times per day. She’s been doing this for two years, and she’s seen dramatic results. Her son has far fewer seizures, is currently in fourth grade and reading at grade level. He still requires some special education services, but even those have lessened in frequency. RESEARCH AND RECOMMENDATIONS
GW Pharmaceuticals, which participated with Cook Children’s in successful clinical trials using Epidiolex, a CBD oil, to treat
children with epilepsy, is now working on something similar to help children with severe autism. Stephen Shultz, vice president of investor relations for GW Pharmaceuticals, says, “It is our intention to start clinical trials in the second half of this year for autism and Rett syndrome [using a drug] containing CBDV.” (CBDV is a non-psychoactive cannabinoid very similar to CBD.) And this might be just the beginning. Other diseases that could potentially benefit from wholeplant cannabis include cancer, neurofibromatosis and fragile X. Texas lawmakers filed bills in both the House and the Senate this year that would legalize marijuana for autistic patients, but neither passed. Families advocating for medical cannabis were actually pretty close to winning House Bill 2107, which would have allowed patients with “debilitating medical conditions” (autism was listed as one of the conditions) access to whole-plant treatment. It received unprecedented support from legislators. It was, however, declared dead because of a technicality: It didn’t make the calendar deadline. Frustratingly, parents like McCain have to wait until the next legislative session in 2019 to plead their case. Matthew Eshbaugh-Soha, professor and chair of the political science department at the University of North Texas in Denton, says the fact that the bill got as close as it did shows real promise. He suggests that parents with severely autistic children contact the governor, lieutenant governor and any member of the House who expressed support for the bill. “The foundation is there now,” he says. “Make the argument that additional groups could benefit.” But Sen. José Menéndez, who authored the senate bill, has said that this is an uphill battle. “[Some politicians] don’t want to be seen as pro-pot.”
So today, for parents like the McCains, the dilemma is still real: Let their son beat himself up, and they’re negligent. Give him medical marijuana to soothe him, and they’re criminals. “This is not about stoning our children,” McCain says. “We are fine with it being regulated and want it researched for longterm effects.” t
Just Say Yes
Making medical marijuana more than a pipe dream for autism and other disorders means staying informed and being an advocate. Here are a few ways to do just that: Search clinicaltrials.gov often for cannabis trials. Even if your child isn’t eligible for a study such as the current one looking at cannabis and severe autism in Israel, know what’s going on and follow the study to get the results. Let your voice be heard. Calling is the most effective way to have your voice heard. So make a phone call to Gov. Greg Abbott and Lt. Gov. Dan Patrick. Gov. Greg Abbott 512/463-2000 Lt. Gov. Dan Patrick 512/463-0001 Read the recently published Let’s Talk About Medical Cannabis by Alexis Bortell to get information on advocating for medical cannabis from her family’s experiences. alexisbortell.com Follow Mothers Advocating Medical Marijuana for Autism (MAMMA) on Facebook to get the latest news, legislative results and calls to action in the fight for medical cannabis for autism in Texas. facebook.com/ TexasMammas
all-inclusive spots to get out & play WORDS JESSICA MEYERS
raci Goldenbaum, 38, sometimes feels like she’s just not measuring up. She often feels like she doesn’t provide enough opportunities or new things for her 9-year-old son, Grayson, who has Joubert syndrome (a disorder that affects brain development) and uses a wheelchair, to try. Navigating activities suited to his likes, needs and abilities proves tricky. “He’s not afraid of a lot,” the Dallas mom admits. “I’m the chicken mom.” But there are now lots of local businesses that let kids like Grayson do just that — try something new — by hosting sensory-friendly and all-abilities events and activities that take place weekly, monthly or quarterly. We found indoor playgrounds, museums, water parks and more with times set
With rides, tunnels, an arcade and lots of music and games, Chuck E. Cheese is a playtime paradise for kids but can be overwhelming for children with special needs. New this year, locations in Allen, Denton, Fort Worth, Garland, Grapevine and Plano host Sensory Sensitive Sundays the first Sunday of the month two hours before they open the doors to the public. Kids try their hand at Whack-A-Mole, Skee Ball and other games in a fun space that’s less crowded, quieter, with dimmed lighting and soft music (or no music if you request it). Chuck E. Cheese himself also makes limited appearances. COST: Play Pass Packages from $10 WHEN: First Sunday of the month, 9–11am; the next one is July 2 WHERE: Multiple locations; chuckecheese.com 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, cafe 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 for
an hour. 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 playing with sand at the Dinosaur Table 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 a tent. Admission includes tea for parents and a snack for kids. Call to RSVP. COST: $10 per child; free for siblings 12 months and younger WHEN: 15th of every month from 6–7pm WHERE: 3245 Main St., Suite 239, Frisco, 469/579-4926; eqkidsclub.com Join your kiddo (for free) at Jumpstreet Indoor Trampoline Parks in Allen, Colleyville, Dallas and Plano when they host a monthly private hour of bouncing for kids with special needs. Kiddos swim through the foam pit, score points at the trampoline basketball court or experience the bounce houses and wavy trampoline. There’s a designated area for ages 3 and younger too. And when they need a break, kids can take a seat right where they are (something that’s not allowed during normal business hours). COST: $4 for ages 3 and younger; $8 for ages 4 and older WHEN: First Saturday of the month, 9–10am WHERE: Multiple locations; gotjump.com
PHOTOS COURTESY OF CHUCK E. CHEESE; EQ KIDS CLUB/GRAEPHOTOGRAPHY; AMON CARTER MUSEUM OF AMERICAN ART; DALLAS MUSEUM OF ART; DAVID ALVEY/ HAWAIIAN FALLS
UN N FF U OR R FF O A LL LL A
aside exclusively for children who are on the spectrum, have sensory disorders, use wheelchairs or have other needs. (For places that host these special events less frequently, check out the “5 Things To Do in July & August” on page 27.)
The Amon Carter Museum of American Art invites children with visual impairment and children on the spectrum to two different education programs specially designed for them. Sign kids with low or no vision up for Close Encounters, which takes place every other month. Docents help set the scene that appears on the canvas using tactile renditions (pictures with raised lines) of the artwork and sensory objects such as velvet cloths or lassos. Exploring the collection on your own? Ask the front desk for a tactile tool bag to accompany your selfguided tour. Or reserve a spot for the monthly Sensory Saturdays, a free program for children with autism ages 5–12 and their parents and siblings. Families tour the galleries, learn about the works then do a hands-on project. COST: Free WHEN: Close Encounters: Wednesday, August 9, 2–3pm; Sensory Saturdays: July 8 and August 12, 10:30am–noon WHERE: 3501 Camp Bowie Blvd., Fort Worth, 817/738-1933; cartermuseum.org The Dallas Museum of Art hosts two-hour, themed Autism Access programs four times a year. During the July 1 event, families will sculpt together, move to tunes from a music therapist and listen to stories. Also on hand: a quiet room filled with sensory activities and facilitated by occupational therapy students from Texas Woman’s University. Before the museum opens to the public at 11am, visit the Center for Creative Connections on the first floor for a semi-private tour of the interactive activities. Register in advance online.
COST: Free WHEN: Saturday,
July 1, 9–11am WHERE: 1717 N. Harwood St., Dallas, 214/9221200; dma.org
Partnering with the Autism Society, AMC Theatres offers family- and sensory-friendly animated films on the second and fourth Saturday mornings. Mark your calendar to see Despicable Me 3 on July 8, Spider-Man: Homecoming on July 22 and The Emoji Movie on August 8. COST: Prices vary by location WHEN: Second and fourth Saturday mornings; times vary by theater WHERE: Multiple locations; amctheatres.com Dubbed “Alamo for All,” movies at Alamo Drafthouse shown before 2pm on Tuesdays feature a sensory-friendly format. Seating is reserved, so save your seat preferences ahead of time — whether your crew needs to be close to the exit or far from the screen. Order a burger, pizza (gluten-free options available) or a warm chocolate chip cookie and have it delivered to your seat during the show. COST: $5 per person WHEN: Tuesdays before 2pm WHERE: 1005 S. Lamar St., Dallas, 214/914-4443; 100 S. Central Expressway, Suite 14, Richardson, 972/534-2120; drafthouse.com B&B Theatres in Wylie shows a sensory-friendly film once a month on a Saturday at noon. See Despicable Me 3 on the big screen with brighter house lighting, quieter audio levels and no previews. COST: $7.45 for kids; $8.55 for adults
WHEN: July 1 at 12pm WHERE: 711 Woodbridge
Parkway, Wylie, 972/412-9999; bbtheatres.com/wylie-12 Dallas Children’s Theater is wrapping up its season of sensoryfriendly shows for kids ages 5 and older, but you can still catch one last viewing on July 8 of Mufaro’s Beautiful Daughters: An African Tale at 1:30pm. Enjoy free face painting, clown performances and arts and crafts an hour before the curtain goes up. During the show, pop in to the quiet room if your kiddo needs a break. To prepare them for the show, download the social story, parent tip sheet (which outlines specific details about the production) and show synopsis. The next season, opening with an adaptation of Goosebumps in September (tickets go on sale August 1), features 10 adapted shows including two matinees. And enroll kids ages 8–12 who prefer to be on stage in Blue Pegasus Players, an acting class for children with autism, Asperger’s and sensory processing disorders. Register for the class by phone. COST: $5 per person for shows; $75 for a three-day class WHEN: July 8, 1:30pm; classes ongoing WHERE: 5938 Skillman St., Dallas, 214/740-0051; dct.org Studio Movie Grill (SMG) provides free sensory-friendly movie screenings 2–3 times a month on select Saturdays at 11am. Take advantage of the dinein theaters with kid-approved options beyond the standard popcorn-and-candy fare. The menu includes gluten-free burger buns and pizza crust. Order the kids’ mac ‘n’ cheese, quesadillas
or a mini cheeseburger while watching Despicable Me 3 on July 8. COST: $6 for adults; free for kids WHEN: Varying Saturdays; call ahead for day and time WHERE: Multiple locations; studiomoviegrill.com
Pack beach towels and sunscreen and suit up for Champions Day at Hawaiian Falls Waterparks in Garland, Mansfield, Roanoke and The Colony. Twice a summer, the park opens up two hours early (and for free!) for kids with special needs and their families (not free). Ride the tube slides, swim in the wave pool or float in the lazy river. Lifeguards use whistles only when necessary and turn the music down too. COST: Free admission for champions; $10 companion tickets WHEN: Saturday, August 5, 8:30–10:30am WHERE: Multiple locations; hfalls.com Get up early — and come hungry (Chick-fil-A serves breakfast) — to ride the water slides, frolic in the spray ground, wade in the shallow pool and more at Wet Zone Family Waterpark in Rowlett during monthly Angel Swims for kids with special needs and their families. Don’t miss the Water Wars station for some water gun fun, then take a break in the grassy area or get out of the sun under one of the umbrellas or pavilions. COST: Angels are free; $4 for family members and caretakers WHEN: July 29 and August 12, 8:30–10:30am WHERE: 5304 Main St., Rowlett, 972/412-6266; wetzonewaterpark.com t
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SPECIAL ADVERTISING SECTION
830 Parker Square Rd. Flower Mound, TX 75028 972-410-5297 www.abc-pediatrics.com
Now through August 25th
C A MP G U I D E
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.
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 email@example.com 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.
Look for these camps and more online at dfwchild.com/camps thrive
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PROVIDING ABA THERAPY FOR AUTISM TREATMENT ACROSS THE LIFESPAN
SPECIAL ADVERTISING SECTION
Child Care & School Directory Feeling overwhelmed by local child care and school options? It’s tough to find the right people to care for your child when you’re not around. Here’s a handy guide to make that important decision easier.
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Achievement, Balance, Community, LLC Multiple Flower Mound locations 972/410-5297 abc-pediatrics.com
Our program focuses on individual intensive therapy in a social environment. We provide ABA and other therapy services. See ad on page 26.
Fusion serves 6th–12th grade students in a flexible, customized learning environment. Each classroom is one-to-one: one student, one teacher. This allows personalized curriculum and teaching for each student’s individual strengths and learning style. We offer rolling admissions and customized scheduling. See ad on page 10.
Utilizing small class sizes, multi-sensory teaching methods and a welltrained and caring faculty, GLA is an excellent school choice. See ad on page 13.
18 mos–8 yrs
Marigold is an accredited program offering ABA therapy, early intervention, indoor motor lab, social skills, parent training, exciting summer program. See ad on page 33.
Notre Dame School educates children with developmental disabilities and facilitates their integration into society. See ad on page 33.
We provide a learning environment that nurtures students as individuals. Students receive focused attention, positive reinforcement, and an education that matches their true potential, through three distinct educational tracks: talented/gifted; learning different; and cognitive difficulties with high academic achievement. See ad on page 31.
The mission of Oak Hill Academy is to provide specialized education for students, pre-k through 12th grade, who exhibit or are at-risk for learning differences and/or social challenges, preparing each student for individual success in life. See ad on page 11.
6 mos–6 yrs
The Rise School provides individualized learning to children with and without disabilities through a therapeutic environment. See ad on page 15.
18 mos–8 yrs
We specialize in full-time center-based ABA therapy for individuals with autism and other developmental delays. Call us today: 866/437-2165. See ad on page 4.
Christian school for students with learning differences. We recognize the unique learning style of each individual. Our redemptive Christian environment is innovative and multi-sensory. We meet them where they are and move them forward while providing hope/support for their families. See ad on page 30.
Doing school differently: We look to maximize learning in a motivating, dynamic, and generalizable environment. See ad on page 28.
Dallas, Plano and Southlake 214/363-4615 fusionacademy.com
Great Lakes Academy
6000 Custer Rd., Building 7, Plano 75023 972/517-7498 greatlakesacademy.com
Marigold Learning Academy ABA Therapy Center
401 W. Washington St., Rockwall 75087 972/722-3892 marigoldlearningacademy.com
Notre Dame School of Dallas 2018 Allen St., Dallas 75204 214/720-3911 notredameschool.org
Novus Academy, The
204 N. Dooley St., Grapevine 76051 817/488-4555 thenovusacademy.org
Oak Hill Academy
9407 Midway Rd., Dallas 75220 214/353-8804 oakhillacademy.org
Rise School of Dallas, The
6000 Preston Rd., Dallas 75205 214/373-7473 risedallas.org
Shape of Behavior, The
4235 Cedar Springs Rd., Dallas 75219 866/437-2165 shapeofbehavior.com
St. Timothy Christian Academy 6801 W. Park Blvd., Plano 75093 972/509-7822 staplano.org
Teach Me Academy
1529 E. Hebron Pkwy., Carrollton 75007 469/892-7500 therapyandbeyond.com
P L AY
WORDS ELIZABETH SMITH
things to do in july & august
Green Hot Chile Peppers
Southlake, 214/288-5438 neuroassistance.org/ events/hot-hatch-r-w-r
Get a helping of mouth-watering breakfast tacos made with freshly roasted Hatch chiles at Central Market Southlake on Saturday, August 26, during the Hot Hatch Chile Run, Walk and Roll. The 5K and 1-mile event benefits the Neuro Assistance Foundation, a Kellerbased nonprofit that provides assistance to those with spina bifida and spinal cord injuries. Registration starts at $20; free for those using hand-cycles or wheelchairs.
Flight Crew Drop off your teen for a short excursion at the American Airlines C.R. Smith Museum on Saturday, July 8, for the Down Syndrome Partnership of North Texas’ Teen Scene. Not yet a club member? Call the DSPNT to register and join for free to check out the museum’s vintage planes with new friends. $5 for event admission. Fort Worth, 817/390-2970 dspnt.org
Never Say Never
The students of Starcatchers, the Plano Children’s Theatre’s therapeutic drama program for children and adults with special needs,
The boy who would not grow up, and the man who dreamed him up, are coming to the Winspear Opera House for a live musical production of Finding Neverland (recommended for ages 7 and older). Book your tickets now for the open captioning show on Sunday, July 16, or American Sign Language interpreted show on Thursday, July 20. Call the box office to secure seats closest to the ASL interpreter, located on the orchestra terrace ($80). Photos courtesy of Neuro Assistance Foundation; Down Syndrome Partnership of North Texas; North Texas Performing Arts; Carol Rosegg; The Purpose Connection
That’s So Metal
are ready to rock in a production of Rock Star (loosely based on the 2003 comedy School of Rock). On August 22, bring the music lovers in your
Dallas, 214/880-0202; attpac.org
family to support the students as they
For more events tailored to you, check the Special Needs Friendly option on our online calendar at dfwchild.com/ calendar.
Pets for a Purpose
perform on the key-
Special needs educator Stephanie Grisham, formerly of Grisham Farms Petting Zoo, returns with a new nonprofit (The Purpose Connection) and monthly pop-up events featuring her smaller farm animals. Join sensory-friendly Collin County Critter Cafes on July 16 and August 26 (locations change each month) for kids’ activities and cuddle time with rabbits, birds, lizards and guinea pigs, plus adoptable cats and dogs. Free admission; donations are encouraged. Multiple locations, 214/544-7255; thepurposeconnection.org thrive
board, bass guitar, drums and more instruments they learned to play over the summer. $10. Plano, 972/422-2575 northtexasperformingarts.org/ starcatchers july/august 2017
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 firstname.lastname@example.org.
AT A GLANCE 29 add & adhd 29 asperger’s & autism 29 celiac disease 29 child care 29 cystic fibrosis 29 developmental disabilities 30 down syndrome 30 dyslexia 30 equestrian therapy 30 obsessive- compulsive 30 recreation 32 respite care 32 sibling classes
Photos courtesy of Challenge Air
32 tourette’s syndrome
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. 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 817/707-6264 for more information.
ASPERGER’S & AUTISM
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. 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, 214/632-1878; 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.
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-bycase basis. Children’s Health Child Development Program 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.
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.
Blue Caboose Children’s Fund Dallas, 469/338-7695; bluecaboose4cf. org. Provides back-to-school 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 Dallas, 214/871-2222; Fort Worth, 817/2497744. 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 Clubhouse for alcohol spectrum Special Needs, The disorder. Meets Bedford, 817/285the fourth Monday 0885; theclubhouse. of every month org. After-school (except December) programs, school CHALLENGE AIR / page 31 from 7–8:30pm holiday programs, at Council of summer proFamilies for Chilgrams and all-day dren; email email@example.com for programs for teens and young adults more information. (ages 13–22) with special needs. Easter Seals North Texas Child Development Center Grapevine, 817/424-9797; 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.
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 pro-
directory vides 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.
“When fear was edging out hope, St. Timothy’s wonderful ministry was the answer we needed.” A Christian School for Students with Learning Differences Serving Grades K–12 Individualized Instruction Low Student-Teacher Ratio Positive, Nurturing Environment Multi-Sensory Approach to Teaching Social Skills Integrated Into the Curriculum
ST. TIMOTHY christian academy
6801 W. Park Blvd. Plano, TX 75093 972-509-7822 staplano.org
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.
Impacting Dyslexia Education Awareness and Support (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, 972/233-9107; dallasida.org. 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.
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. Victory Therapy Center Roanoke, 682/8311323; victorytherapy.org. Provides therapeutic riding, physical therapy and counseling services through the relationships riders form with horses.
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.
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.
NIGHT LIGHTS / page 32
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, 469/742-9611; manegait.org. Provides a fun, enriching and supportive environ-
Stable Strides Farm Therapeutic Riding Flower Mound, 940/595-3600; 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 as soon and as safely as possible. Riders participate in the Special Olympics and other competitions and shows.
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.
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.
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.
Blue Sky Therapeutic Riding & Respite Krugerville, 469/450-9594; 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.
ment 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.
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.
EQUEST / The healing power of therapy horses helps improve
the quality of life for kids with a range of physical, cognitive, social and learning disabilities. (page 30) Best Buddies Statewide, 214/242-9908; bestbuddies.org/texas. 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. Challenge Air Dallas, 214/351-3353; challengeair.com. Offers motivational and inspirational aviation experiences to children and youth with physical challenges. 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 familyfriendly events throughout the year. Express Cheer Multiple locations, 972/731-5888; 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. 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. 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. Miracle League of DFW Arlington, 817/733-6076; mldfw.org. Provides an opportunity for children with physical or mental challenges to play baseball.
Photos courtesy of Rays of Light; Equest
Miracle League of Frisco Frisco, 214/295-6411; 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
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, 817/4812559; firstmethodistgrapevine.org. Monthly respite care for children with special needs and their siblings held at First United Methodist Church.
KINDERFROGS SCHOOL AT TCU / Children in the pre-K program
Bryan’s House Dallas, 214/559-3946; bryanshouse.org. Provides respite care, child care and support services for children affected by HIV/AIDS and their families as well as children with other special health needs.
learn through self-directed play such as the art project these two selected. (page 29)
Special Olympics, social activities, 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. Special Olympics Texas Statewide, 512/835-9873; sotx.org. Provides year-round sports training and athletic competition in a variety of sports for children and adults with intellectual disabilities. 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-of-season trophy. Visit their Facebook page. 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. 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 drop-in child care that is inclusive to children with special needs.
Calab, Inc. Multiple locations, 972/263-2112; calabinc.com. Provides quality individualized child care that encourages independence in individuals with disabilities. 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. 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. 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. 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.
on the second Friday of each month. Reservations required. 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. Night Lights Dallas, 214/706-9535; raysoflightdallas.org. Children with special needs ages 6 months–21 years and their siblings ages 6 months– 13 years 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 and every first Friday of the month at White Rock United Methodist Church. Free respite care for Spanish-speaking families on the third Friday of every month at the Christ Foundry United Methodist Mission. Registration required. Night OWLS Dallas, 214/523-2284; hpumc.org/ night-owls. Respite program for children ages 3 months to 13 with identified special needs and their siblings on the first and third Friday night of each month at Highland Park United Methodist Church. 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. Respite Care at Irving Bible Church Irving, 972/560-4613; irvingbible.org. Respite night one Saturday a month for children with special needs from 5:30–8pm. Reservations required.
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 FEATNT Resource Center and Library. Library books on sibling issues, autism and a range of other disabilities and related topics 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.
Harvey’s Kids Carrollton, 972/492-2432; hcumc. org. Arts and crafts, food and other activities for MIRACLE LEAGUE OF DFW / page 31 children with special needs and their siblings every second Saturday of the month from 5–8pm. TOURETTE’S SYNDROME Reservations required. North Texas Tourette Syndrome Support Kids Night Out Plano, 972/941-7272; plano. Group Irving, 281/238-8096; tourettetexas.org/ gov/408/Adapted-Recreation. Respite night for dallas-northtexas. Serves North Texas families children ages 1–10 with special needs and their with Tourette’s syndrome and its associated dissiblings; meets monthly (except June and July) orders. Visit the website and contact the group at Liberty Recreation Center from 6:30–9:30pm leader for meeting times.
Photos courtesy of KinderFrogs; Miracle League DFW
APT G: A Place to Go Allen, 214/3858850; 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.
SPECIAL ADVERTISING SECTION
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life goes on
t’s that time of year again. Summertime means kids of all ages play baseball, swim and spend days running around carefree. That’s not the case for my boys. It took me a long time to be OK with this. And even now, after I’ve come to terms with the fact that my boys won’t ever participate in typical activities, reminders still sting. And unfortunately, reminders come daily for the three brutal months of June, July and August. Man, would I love for my boys to play baseball. I would love to watch them on the field, cheering them on from the bleachers. I’d be a bundle of excitement and nerves as they approached the plate, rearing the bat back and staring down the pitcher. Unfortunately, that’s not our reality. I’ve spent many columns telling you about Nick’s many diagnoses that keep him in and out of the hospital. This time, I’m going to share some things about my son Ethan. He’s 7 and he had brain surgery. A piece of his skull was removed and there’s a mesh patch in its place, so he can’t
Cruel Summer WORDS JOSH SCHILLING ILLUSTRATION MARY DUNN
play sports with head injury doting uncle I am, but inside, I’ll risks — contact sports and be swallowing that painful feeling anything involving balls are that swells in my throat, knowing definitely prohibited. this developmental milestone will It feels like be something else such a letdown Ethan has to miss. that he won’t Swimming, on “I’ll be swallowing the other hand, experience the camaraderie is something that painful of teammates, that Ethan can feeling that swells do. He requires hitting a home run or getting the a lot of support in my throat, honor of receiving and someone to knowing this the game ball. monitor his vitals developmental I have three constantly. He nephews, all near has ichthyosis milestone will Ethan’s age. Two of vulgaris, a genetic be something them are playing skin disorder summer T-ball this that limits his else Ethan has year. They love it, sweating so he to miss.” and they’re both overheats quickly. excelling. I am so Being outside proud of them, but for even a short honestly, the thought of watching amount of time means we bring them play makes me anxious. the oxygen tank and extra water Of course I’ll attend any games to potentially push through his I can and cheer them on like the gastronomy tube in the chance
he overheats, gets dehydrated or has difficulty breathing, all of which happen quite a bit during the summer months. So we stay indoors as much as possible. When we leave the house, we make sure we have everything on a multi-page checklist. Oxygen? Check. G-tube supplies? Check. Extra diapers? Check. Medications? Check. I’m exhausted before I even get out the door. Then I stop thinking about my summertime blues and start thinking about Ethan. Would he even want to play baseball? Does he even like to swim? I refocus on my blessings and all the things that Ethan can do. He can dance. He took a hip-hop class this past spring; the recital was in May and he did great. He may not have always been in sync with the rest of the dancers, but he sure thinks he’s Justin Timberlake out there. This summer, I will proudly watch Ethan do his thing on the dance floor and my nephews do their thing on the field. I have to remember, it’s not about me. It’s about coming together as a family and accommodating him in anything he wants to do. Ethan doesn’t see his limitations so I shouldn’t either.
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