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thrive DALL AS-FORT WORTH

VOL. 9 ISSUE NO. 5

SEPTEMBER/ OCTOBER 2017

A RESOURCE FOR FAMILIES LIVING WITH LEARNING DIFFERENCES AND SPECIAL NEEDS

HAPPY CAMPERS THE BEST STATE PARKS WITH ACCESSIBLE FUN

MEET FELECEIA+ ZOE THE ENTREPRENEUR MOM AND HER DAUGHTER

TAKE THERAPY TO THE GYM

THE GOOD FIGHT

TEXAS PARENTS BAND TOGETHER TO BATTLE FOR THEIR KIDS’ HEALTH CARE

+ 91

MUST-HAVE SPECIAL NEEDS RESOURCES

PUBLISHED BY


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pages

VOL. 9 NO. 5

8

22

features

26

departments TAKE NOTE

18 UNITED THEY STAND

How the threat to Medicaid is

7 Gym Class Heroes 8 All the Feels 8 Best Foot Forward 8 Free Speech

inspiring advocacy efforts in North Texas and beyond words Misty Jackson-Miller

22 TOUR DE TEXAS

22

11 Mom Next Door: Feleceia Benton 14 Car Repairs To Go 14 Sound Advice: Decisions, Decisions 14 Sail Away 16 Mommy Diary: Shelley Neustupa

words Jessica Myers

column

KID CULTURE

30 Life Goes On words Josh Schilling

THE BEST STATE PARKS WITH ACCESSIBLE FUN

Editorial

EXECUTIVE EDITOR Wendy Manwarren Generes MANAGING EDITOR Carrie Steingruber

CALENDAR EDITOR Elizabeth Smith

26

MUST-HAVE SPECIAL NEEDS RESOURCES

PUBLISHED BY

PHOTOGRAPHY Carter Rose Correction: In our July/August 2017 issue, in the “Naturally Controversial” article, one of the moms mentioned that her son, who suffers from epilepsy with continuous spikes and waves during slow-wave sleep, was not covered under the Compassionate Use Act. That’s incorrect. His disorder is covered.

Advertising

PR/Marketing

ASSOCIATE PUBLISHER Diana Whitworth Nelson

GRAPHIC DESIGNER Susan Horn

ACCOUNT EXECUTIVES Nancy Crosbie, Nikki Garrett, Stacy Howton, Nancy McDaniel, Susanne Nachazel, Kristen Niebes, Sandi Tijerina, Kerensa Vest

EDITORIAL DESIGNER Katie Garza

ADVERTISING COORDINATOR Amy Klembara

Art

+ 91

TEXAS PARENTS BAND TOGETHER TO BATTLE FOR THEIR KIDS’ HEALTH CARE

September & October

staff box Lauren Niebes

THE GOOD FIGHT

18

26 Directory of Special Needs Resources

Creative Director

TAKE THERAPY TO THE GYM

7

DIRECTORY

Joylyn Niebes

11

MEET FELECEIA+ ZOE THE ENTREPRENEUR MOM AND HER DAUGHTER

25 5 Things To Do in

ASSISTANT EDITOR Jessica Myers

SEPTEMBER/ OCTOBER 2017

A RESOURCE FOR FAMILIES LIVING WITH LEARNING DIFFERENCES AND SPECIAL NEEDS

HAPPY CAMPERS

REAL MOMS

Six state park campgrounds for fresh-air fun

Publisher/ Editor-in-Chief

thrive DAL L AS-F O R T WO R TH

VOL. 9 ISSUE NO. 5

AUDIENCE DEVELOPMENT DIRECTOR Candace Emerson PROMOTIONS COORDINATOR Beth McGee

Administrative

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.

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NEWS

take note

ETC.

LEFT / Daniel Stein of Special Strong does a seated low row with a client with Down syndrome.

one-on-one personal training sessions or adaptive boot camps. “Everyone gets a custom workout that combines strength exercises with endurance and brain integration in a 45-minute session or class,” Stein explains. “We work the imbalances.” That means that a program for someone who uses a wheelchair includes exercises that flex the glute muscles. Someone with cognitive delays might be asked to close their eyes and lift the left leg and right arm simultaneously “to engage the right and left hemispheres in the brain,” he says. Philip Miller, owner of Crull Fitness in Richardson, takes a similar approach with his clients with special needs in hourlong sessions or group challenge programs. He integrates a light cardio warmup with everyone then caters exercises to each individual — ranging from simple conditioning to strength training — for kids age 9 and older, who are considered moderate- to high-functioning. And Special Abilities of North Texas, a nonprofit organization in Lewisville, offers a health and fitness program that helps adults with special needs improve their overall health with, among other things, individualized physical training exercises. While there’s no denying the health benefits associated with Why exercise and structured programs Weight? like these to help make fitness part of someone with special needs’ Dr. Joyce Mauk, CEO and CRULL FITNESS , routine, too much of even a good developmental pediatrician at the Richardson, thing can be bad. Child Study Center in Fort Worth, 972/497-9900; crullfitness.com “A child with disabilities should says exercise is not just good for be given the opportunity to exerthe body but the mind as well. SPECIAL ABILITIES cise five times a week,” Mauk says. Research shows physical fitness OF NORTH TEXAS , Lewisville, “But a fair amount of that should makes all people happier, calmer, 972/317-1515; be obtained in a fun play setting.” more flexible, more focused and specialabilities.net That’s true regardless of the better equipped to handle stress. SPECIAL STRONG , child’s age. Incorporate physical “And for those with developDallas-Fort Worth area, activity into everyone’s lives. Splash mental delays, there is an even 972/836-8463; around in the pool together or higher instance of obesity so specialstrong.com race each other around the block physical activity — something in addition to enrolling kids in an they can do lifelong — is extra organized fitness program or class. important,” Mauk says. The Hise family has made Robert’s twice-aThe Dallas-Fort Worth area isn’t short on week cardio and weightlifting sessions a family options. There are lots of organizations that help affair. “He thrives on the routine and loves kids, teens and adults with special needs get teaching his sister and I the exercises at home,” (and stay) active. Flip to page 26 in this issue to his mom says. Not to mention that the regular find our directory of listings for baseball, swim, workouts have definitely helped her son channel gymnastics, cheerleading, martial arts and more. his aggression. “He’s able to take breathing stratBut there are also a handful of organizations that egies he’s learned in the gym and use them to tailor personal training and group fitness classes help him when he’s frustrated outside the gym. to kids and teens with disabilities. Instead of acting out, he makes fists with his Stein and his team train kids as young hands and takes deep breaths to calm himself as 6 who have autism, cerebral palsy, Down down. The change is incredible.” syndrome, Asperger’s or other diagnoses using

gym class heroes

local gyms offer classes and training for kids with special needs WORDS WENDY MANWARREN GENERES

Photo courtesy of Lori Wilson Photography

O

ne year ago, Jennifer Hise was desperately seeking an outlet for her son’s aggression. Sixteenyear-old Robert has autism, and the McKinney mom wanted to find some sort of program or activity that would mitigate Robert’s energy. “When he’d get frustrated, he’d hit walls,” she says. It was at a Halloween carnival resource fair that she first met Daniel Stein, founder and personal trainer at Special Strong, an organization specializing in health and fitness services for kids, teens and adults with special needs in the Dallas-Fort Worth area. Stein knew a thing or two about aggression. As a teen, he suffered from depression, mood disorder and ADHD, which sometimes led to unwarranted outbursts. And though he saw lots of therapists, doctors and counselors, even took doctor-prescribed medications, it was a basic weight bench, 15-pound barbell and an adjustable weight set his parents gave him that helped most. “It was the most effective therapy I’d experienced,” Stein says. “Working out helped my ADHD symptoms. I was able to focus better in school, and the endorphins helped alleviate my depression and improved my mood.”

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take note

BEST FOOT FORWARD

To help your child talk through his feelings — and to help you understand what he’s going through — play A Penny For Your Thoughts, a therapist-developed card game for kids who are learning how to recognize and regulate their emotions. The game’s color-coded cards illustrate emotions, places and people, and players use the cards to make up stories or

recount actual situations, such as “I felt mad at school when my friend took my pencil without asking.” Then skills cards teach healthy coping mechanisms such as using controlled, deep breathing or identifying nearby sights, sounds, smells and textures. Order your set online, where you can also find poster-worthy, 11-by-7-inch prints of skills cards to hang in his room as a constant reminder. —Jessica Myers

A Penny For Your Thoughts, $29.99 // 541/972-3458 // apennyforyourthoughtscards.com

Livox, $250 Available from Google Play livox.com.br

Free Speech

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John’s Crazy Socks 631/760-5625 johnscrazysocks.com

When his daughter Clara was born with cerebral palsy, Brazilian software developer Carlos Pereira created Livox to help his daughter express herself. (The name Livox fittingly means “liberty through voice.”) Unlike other apps that use pictures to help people communicate, Livox doesn’t overwhelm your child with endless icons to choose from; instead, the app uses machine learning to pick up on your child’s routines and show only pictures that fit the time and place. The app also adjusts to your child’s needs — if she has motor impairment and can’t easily touch the icon she wants, the app corrects her touch; if she thrives on routine, the app has a setting to keep icons from changing positions. Livox has partnered with Florida Hospital in Orlando to test the latest functions, but for now, the app is available to all ages (and in 25 languages!) from the Google Play store for $250. —C.S. thrive

september/october 2017

Photos courtesy of Kathryn Snell-Ryan; John’s Crazy Socks; Livox

all the feels

To celebrate Down Syndrome Awareness Month in October, snag a pair of on-theme socks from John’s Crazy Socks. Co-founder and long-time sock enthusiast John Cronin, a 21-year-old with Down syndrome, helped design the Down Syndrome Awareness Sock, which is patterned with “3 [heart] 21” to celebrate that extra chromosome. $12 for crew or $15 for knee socks; sales benefit the National Down Syndrome Society and the Association for Children with Down Syndrome. Before you check out, browse the rest of Cronin’s inventory, which includes other charity socks and more than 700 colorful styles. See a lot you like? Sign up for the new Sock of the Month Club to receive a pair on the regular. Subscriptions start at $12.99 per month (with discounts if you prepay for six or 12 months), and 5 percent goes to the Special Olympics. Shop online. —Carrie Steingruber


Home & Community based ABA Therapy Family-centered services with a focus on quality of life

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Now Open in Trophy Club


LOCAL

real moms

Mom Next Door

Agency (named for her 7-year-old daughter), five years ago. She has a laundry list of side gigs — a quarterly magazine, a weekly podcast and a second book in the works — and is a working thespian. All this, and she’s a handson single mom. Zoe, who has Down syndrome and was born without fingers on her right hand, is thriving in her own right, starting first grade this fall. “She’s fantastic,” says the Dallas mom. “She’s the funniest person I’ve ever met in my entire life.” Though Zoe’s father is currently in the picture, he was absent for her first five years. Benton says it was an “oops pregnancy.” A model daughter from a deeply religious fam-

Feleceia Benton WORDS NICOLE JORDAN

T

PHOTOGRAPHY CARTER ROSE

wo years ago, Dallas mom Feleceia Benton wrote and published her first book. “I did it on a whim,” she says. “I just wanted to see if I could.” It’s a move perfectly characteristic of Benton, who brings a can-do attitude to nearly everything she does. The 34-year-old mom launched her own Dallas-based company, Zoe Communications

STORIES

ily, she was “traumatized” when she learned she’d become pregnant out of wedlock. “I was the really good kid in my family,” she says. At the time of the pregnancy, she was working for her parents as the director of operations at the school they’d founded, Turning Point Christian Academy. “I found out I was pregnant at 4–5 weeks and didn’t tell them for another month.” When she finally revealed her secret, her family rallied around her in support, which became invaluable months later when Zoe was born, and Benton found herself navigating life as a parent to a child with special needs. Benton didn’t know anything about Down syndrome before Zoe. In fact, when doctors told her they suspected the infant had the disorder, she couldn’t muster a reaction.

“It’s funny how hardship makes faith come alive.”

ABOVE / Single mom Feleceia Benton is very hands-on with her 7-year-old daughter, Zoe, while running a successful communications agency, authoring a book and acting on the side.

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8/8/17 11:55 AM

FELECEIA BENTON

“I didn’t know what it meant.” She credits her sister, who works with children with special needs in prosthetics, with helping her navigate those early days. After five days in the neonatal intensive care unit, Benton and Zoe went home and started their life together. Packed with therapies and doctors’ appointment, it was far from the freewheeling way of life Benton was accustomed to, but she shined as a parent — and as a businesswoman. In early 2012, with a toddler at home, Benton felt an entrepreneurial itch and decided the time was right to create something of her own. She took a leap and founded Zoe Communications Agency, specializing in branding, brand management, graphic design and marketing. Though her foremost love is musical theater, her father urged her to study “something more practical.” So she double majored in musical theater and advertising/public relations at Texas Christian University. Her instinct was on point. Benton launched the company as a small communications agency, and it’s since grown to service communities and city governments. For Benton, it’s the perfect intersection of life and work. “My job is my hobby and my hobby is my job,” she says. As if she weren’t busy enough, she’s working toward a master’s degree in public leadership from University of North Texas at Dallas. On the rare day off, she enjoys brunching with Zoe or stopping by one of their favorite spots around town: Dallas Farmers Market or Malai Kitchen in West Village. She has a boyfriend, whom she’s been in a relationship with for two years. And she’s a fierce advocate for the special needs community. Each year on World Down Syndrome Day, she hosts an event called “Think Out, Be Light,” which gives local children the opportunity to walk a runway wearing clothes from local designers.

It’s a full plate, but Benton still makes time to keep the creative juices flowing. She writes often and hosts a weekly podcast on LifeChat Radio. Then there’s her favorite pastime: theater. A self-proclaimed “theater geek,” Benton was bitten by the acting bug her sophomore year of high school, when she landed a role in Godspell. Her love for performance art never waned, and to this day she makes it a point to act in at least one production a year. And she’s good. Google her name and a slew of credits and reviews come up. Over the past couple of years, she’s played lead roles in Les Misérables and Aida on local stages including Uptown Players in Dallas, Dallas City Performance Hall, Dallas Theater Center and Bass Performance Hall in Fort Worth. Her schedule is hectic at times, but Benton manages it all with the help of a “small circle of support.” To stay grounded, she works out twice a week. She’s a firm believer in maintaining some semblance of calm at home for Zoe, regardless of what’s going on in her own life. “I know that she feeds off of my energy,” she says. “So I believe in keeping our house as stress-free as possible. I choose to not be stressed out about things.” The mom strives to maintain perspective and to stay focused on her faith. “It’s funny how hardship makes faith come alive,” she says. “Zoe has taught me the reality of a lot of things: faith in action, purpose and requiring wisdom in order to navigate life.” Benton is optimistic about the future — both for herself and for Zoe. She’s focused on growing the agency, which she views as her legacy for Zoe and any children that may follow. “I believe firmly that to those whom much is given, much is required. I want to leave my kids with something when I’m not here anymore. I’m passionate about that and that pushes me. Sometimes, you’ve got to be willing to do a little extra.” t


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rm: H E L P Sound Advice Decisions, Decisions

car repairs to go When your pesky check engine light comes on but you can’t fit the auto repair shop into your calendar, for, like, months, try Your Mechanic, a service that comes to you seven days a week, rain or shine. Visit the website or iOS app to see profiles and reviews for vetted local mechanics, and make an appointment based on their posted availability. (Pro tip: The

highest-rated mechanics show up first, so no need to scroll and scroll.) Every car guy or gal has at least 10 years of experience and will meet you at your house, therapist’s office or even the grocery store parking lot. And the mechanic can do more than cure whatever’s ailing your vehicle — when you enter your car’s make and model in the app, you can view a manufacturer-recommended maintenance schedule and get a quote for an oil change or brake pad replacement. —Jessica Myers

sail away

Gabriela “Gaby” Garcia is the founder of PSP Professional Services, Inc. in Fort Worth, where she and her colleagues provide individual, group and family counseling. Services are available in English and Spanish. For more information, call 817/626-6401 and visit pspcounseling.com.

Next time you need a little one-on-one time to reconnect with your sweetie, reserve two seats aboard Scott Self’s hand-built catamaran, the Seawolf, for a 90-minute excursion around Lake Ray Hubbard in Rockwall. While he offers moonlight and daytime cruises, we recommend the romantic Sunset Cruise, which departs daily at 7pm from the dock in front of the Hilton Dallas/Rockwall Lakefront. Pack a picnic and a bottle of wine to share. Book online for $30 per person. —Nicole Crites

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Photos courtesy of Your Mechanic; Sail With Scott; Illustration by Mary Dunn

Your Mechanic, labor rates from $60 per hour plus the cost of parts Dallas-Fort Worth area, 215/260-5574 yourmechanic.com

As a parent, you are excited about the new adventures that each developmental stage brings; however, that excitement can quickly turn into fear and anxiety as your child with special needs becomes a teen, then a young adult. Questions cloud your mind, leading to confusion and difficulty making decisions. These feelings are normal. It’s important to know that there isn’t only one correct decision. Talk to families that have transitioned their teen into young adulthood. Ask questions: What helped you decide whether your teen would thrive best in your home or in a group home? Did you seek full guardianship, or are they able to make some of their own decisions? Consult with experienced professionals such as an attorney and a financial planner, and attend workshops with resources for parents. Finally, trust your decision. What works for one family may not work for another. You have been your child’s advocate for their entire life and have gotten this far. Know you are not alone. If you are feeling overwhelmed, talk to a counselor to help you navigate this important journey in your family’s lives.


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DIARY

A Day in the Life of

SHELLEY NEUSTUPA Shelley Neustupa works from home in Highland Village and runs the national mentor program for Camden Property Trust. She is the mother of two boys — Cody, 4, who has autism, and Cameron, 15 — and wife of 19 years to her high school sweetheart, Brad, a senior regional distribution manager for Anvil International. She blogs about her journey to better understand autism through the eyes of her nonverbal son and his neurotypical older brother at autismawarenesseveryday.wordpress.com.

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AM I wake to laughter — this goes on for 38 minutes. I just smile, watching and listening to Cody through the monitor until he falls back to sleep. This is when I get the most vocals from my son, as he carries on a full-blown conversation of random jibber-jabbers to himself. Oddly, I love hearing it, even at 1am. 6AM I haven’t had an alarm clock in four years. I don’t need one — I have Cody. Today he’s up at 6am. Sometimes it’s 5am. 6:20AM Mornings are a delicate dance, and every minute counts in getting out the door on time. Grooming and dressing is a high-anxiety time for us. We recently started a picture schedule in our home and it’s hard to predict the time needed to do this effectively. I keep trying to remind myself that anxiety isn’t always a bad thing. In fact, the right dose of anxiety is just what we parents of kids with autism need to help us encourage our children’s independence instead of enabling them to always rely on us. 6:30AM The race is on, and my husband and I divide and conquer. I feed our four-legged girls, Molly and Lily, and let them out. At the same time, I open the hen house door for our seven chickens and FaceTime my oldest son, Cameron, who’s still asleep upstairs, to tell him it’s time to wake up. 6:45AM I start preparing Cody’s breakfast and take my first sip of coffee. He is my no-meat, very picky yet pretty

healthy eater who has some texture issues, so we get pretty creative. He takes his multivitamin and Omega Complete in Greek yogurt — yogurt is typically part of all his meals. 7AM Cody is my multitasker and likes to be doing a few things while he is eating. I take advantage of this and run a few ABA programs with him between bites. I enjoy my now semiwarm coffee and assist Cody with receptive and expressive labeling. I ask him questions or give him directions, and he responds by signing the answer or pointing to the object I ask him to identify. 7:15AM My husband takes Cody to communications class, while I brush my teeth, throw some clothes on and take Cameron to school. 7:30AM Back at home, I conduct conference calls for work before leaving to pick up Cody. 10:45AM I arrive at Cody’s school, discuss successes and work areas with his teachers, and rush back home for Cody to start ABA. 11AM While I work, Cody cycles through 2–3 therapists over a six-hour time period. 3:30PM I have another pause in work to go pick up Cameron from school. 5PM I get back to my desk, finish up loose ends and relieve Cody from therapy. This is when I put my multitasking skills to work: I juggle laundry, dinner, and running to the grocery, cleaners and bank all while meeting Cody’s needs. I like to think I am as powerful as Wonder Woman. 6PM Cody’s iPad is his communication device. He requests to go outside. Both our kids love the outdoors. We live near Lake Lewisville, so Cameron goes off to fish, and Cody and I head out for a walk. This is his time with less structure, so I let him take the lead. 6:45PM We sit down for dinner as a family. Cody stays for most of our meal then goes to play. We don’t fight it because this gives us time with Cameron to discuss his highs and lows for the day. 7:30PM Visualize a La-Z-Boy chair — that would be me. Cody loves to lie on me with his arms crossed behind his head and his legs draped down mine. I love this snuggle time with him since he is not a very affectionate child. 7:45PM Bathtime! This is Daddy and Cody time. This kid loves the water! Cameron heads upstairs for the evening to finish up homework and play video games with his friends. I finish cleaning up the kitchen and get lunches ready for tomorrow.

Photo Courtesy of Christina Ahlfs Photography

rm: M O M M Y


All About Shelley

A Walkto Remember

What she’s reading The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism by Naoki Higashida

A ceremony to acknowledge and remember our babies who died due to miscarriage, stillbirth or early infant death

Restaurant she frequents with the family Anamia’s

Saturday, October 7

No. 1 item on her bucket list Intimate concert with Kenny Chesney on one of the Florida Keys

1 pm / Check-in from 12-12:45 pm Calvary Church 4401 N. State Hwy. 161 Irving, TX 75038

Words she lives by Too blessed to be stressed.

Visit our website to register.

Favorite app Prisma. If I am not writing my blog, I love editing photos. Workout she manages to squeeze in Kickboxing at 9Round. Their 30-minute program works since I can go last-minute. Favorite scent Essential oils and anything coconut

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She wishes she had more time to Spend with my best friends

Mommies Enduring Neonatal Death 972-506-9000 • rebekah@mend.org

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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 editorial@dfwchild.com. All submissions are subject to editing and may be cut for space.

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8PM Off we go upstairs for Cody’s bedtime. First, he grabs his lovey from his room. Then he runs to his brother’s room, stands at the door and waits for the prompt from his brother before throwing himself on Cameron for a hug and kisses goodnight. Cody then runs and jumps into his bed for me to tuck him in. We sing bedtime songs (or should I say, I sing bedtime songs). I am still looking for opportunities for him to vocalize, so I embed some therapy while singing and pause so he can say the next word. We say our prayers, and I tuck all his stuffed friends around him and turn on his Mozart and his nightlight. 9PM I get excited because I think of this time as “me” time. But in reality, I get snuggled into bed to watch a show on my DVR and boom! I fall asleep in 10 minutes flat. t

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17


United They Stand

T

HOW THE THREAT TO MEDICAID IS INSPIRING ADVOCACY EFFORTS IN NORTH TEXAS AND BEYOND WORDS MISTY JACKSON-MILLER

WELVE-YEAR-OLD VICTOR LEEMAN HAS

cerebral palsy, epilepsy and scoliosis; he’s legally blind; and he has no known syndrome to account for his challenges. His story isn’t unlike others that have recently made news. In fact, his story did make local NBC 5 in April of this year. That’s because the Colleyville preteen requires full-time care, which comes with a very hefty bill: Last year, his family’s private insurance covered about $317,000 of his medical expenses. Medicaid paid another $300,000. Yet now with Medicaid funding’s uncertain future, Victor’s care comes with lots of question marks. But Victor’s mom and so many other parents of kids with special needs — all of whom depend on Medicaid for at least some help — aren’t content to wait and see. Caring for her son has been Laura Leeman’s full-time job since he was born, and with the proposed Medicaid cuts, advocating for medically fragile children and those with disabilities tops her daily to-do list. “There are a lot of misconceptions about who is using Medicaid,” she says. “I’m not afraid to say, ‘This is not right!’” OPPOSITE PAGE Laura Leeman and her son, Victor, rallied with

other famlies at the state Capitol in March to urge lawmakers not to cut funding for kids on Medicaid.

You may recognize her name. Leeman speaks to small groups and at meetings around town about the issues Texas’ fragile kids face since the state privatized Medicaid and handed over the contracts to private insurance companies. She appeared in a segment on NBC 5 about how some parents (not her) have had to institutionalize their children with special needs as a result of a lack of funding, and she was even a guest speaker at a Bernie Sanders rally at the Verizon Theatre at Grand Prairie. Leeman schedules appointments with policymakers whenever she can. Sen. Ted Cruz’s regional office is near Texas Scottish Rite Hospital for Children in Dallas, where her son goes for regular therapy treatments — so she’s become a regular in his office too. And when she’s not in front of people physically, she makes sure she is virtually. Leeman uses social media platforms like Twitter to amplify her message, using hashtags like #MedicaidMatters and #MedicaidSavesLives in the posts she shares. Follow her, and you can retweet the slides she creates such as one that reads: “My son didn’t ask for his health to be so challenging. In spite of it, he smiles.” She also serves on the leadership team of Protect TX Fragile Kids, a nonprofit started last year as a coalition of parent-advocates that has now grown to over 1,500 members. The group has been at the forefront of the Medicaid conversation in Austin and was formed in response to STAR Kids, a Medicaid managed care program that went into effect a year ago and has proven to be problematic for some kids with disabilities. POSITIVE STEPS

Leeman is just one mom in this Medicaid funding battle, and her efforts (and those of others like her) might just be working. In the 2015 Texas legislative session, pediatric therapies for kids with

C O N T I N U E D O N T H E N E X T PAG E

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disabilities saw drastic cuts. The Medicaid reimbursement rates of acute therapy services were reduced — a $350 million funding cut — which put a huge financial strain on speech, occupational and physical therapists. As a result, clinics and private practices were quietly shuttered, leaving some children with disabilities or developmental delays without services. In fact, Easter Seals of East Texas (with locations in Texarkana and Bryan), University of Texas Medical Branch in Houston, and Hill Country MHDD Centers in Kerrville all notified Texas Health and Human Services that while they would continue to offer therapy services, they were ending their Early Childhood Intervention partnerships due to financial reasons. During a special session at the beginning of August, the Texas House passed a measure that would partially reverse this controversial cut. House Bill 25, authored by Rep. Sarah Davis, R-West University Place, would restore about $160 million of that funding. (As of press time, HB 25 had been received by the Senate at the end of the special session. By the time this magazine is printed, a second special session may have been called, or the bill may have failed simply because lawmakers ran out of time.) HURDLES REMAIN

Even as this potential partial reversal begins to take shape, the 85th Legislature presented setbacks for organizations like Protect TX Fragile Kids fighting for Texas’ kids with special needs. Senate Bill 1927 would have increased transparency in STAR Kids’ managed care programs by making data regarding enrollment and services publicly available. The bill sailed through the Senate and even passed through the House committee on human services. However, SB 1927 never

went to the House floor for a vote; To put it into perspective, it got lost in the House Calendars Victor’s lifetime limit was set at $2 Committee. A committee member million. He hit $600,000 when he had anonymously tagged the bill, was 3, Leeman says. which prevented it from being For Texas, the passage of added to the full legislative calenBCRA would have meant a loss of dar. And just like that a bill does $10.5 billion in federal Medicaid not become a law. funding between 2020 and 2026. As a group, Texas children with For their part, the Congresspecial needs stand to lose even sional Budget Office concluded in more in the national conversation their June 2017 report that states surrounding Medicaid and the would have to “commit more of future of their their own health care. resources, cut “The payments to [original] cuts health care made by the providers and Texas Legislahealth plans, ture amounted eliminate to $350 million optional serover a two-year vices, restrict period,” says eligibility for Adriana Kohler, enrollment or the senior adopt some health policy combinaassociate at tion of those Austin-based approaches” Texans Care for under BCRA. Children. “[The Children ABOVE Leeman shares her message U.S. Senate’s] who rely on stages across North Texas and on Better Care Recon Medicsocial media. onciliation Act aid waiver (BCRA), which failed in late July, programs to receive in-home care would have cut Texas Medicaid by would be an especially vulnerable over a billion dollars each year.” population to annual and lifetime Under BCRA, Medicaid would caps, rewritten formularies, have been slashed by roughly income requirements and more. $772 billion, largely through per There are approximately 19,000 capita caps. With per capita caps, cases on the interest list (what an average amount of medical Health and Human Services calls benefits is calculated per enrollee the waiting list) for the Medically and then capped at that amount. Dependent Children Program The average funds per enrollee (MDCP), which provides aid for are bundled together and then ischildren with extreme maladies sued as a lump sum to each state. who require round-the-clock Because these funds are not set to nursing facility care. These cases grow with inflation, nor with the can take months or even years cost of medical expenditures, over to process. So in the event of a time, federal Medicaid spending significant Medicaid funding would have shrunk — by $772 shortfall, the waiting list could billion, according to BCRA. While grow exponentially. anyone’s health care spending can But even with BCRA’s summer vary significantly from year to failure, 43-57, with nine republiyear, children with complex medicans and all democrats opposing cal needs often require care that it, Medicaid funding issues still hit far exceeds these averages. Texas families hard.

FEELING THE EFFECTS

After the rollout of STAR Kids last November, Jennifer Hall’s 9-year-old son, Preston, who has craniofacial disorder and a genetic disorder that affects multiple systems and causes developmental delays, lost his pulmonary physician because the provider was not willing to accept any STAR Kids plans “due to previous issues with reimbursements.” The Grapevine family had to find a new pulmonologist, one who was in-network. They also experienced a delay in getting continuous positive airway pressure (CPAP), a ventilator that uses a steady stream of air to hold Preston’s airways open and help him breathe while he sleeps. The delay in getting approval for CPAP triggered a behavioral and emotional regression in school. “He wasn’t sleeping [well] at night, which meant bringing in more aide time and more time in special education,” says Hall, who is also the director of Protect TX Fragile Kids. And more recently, in July, Preston was denied renewal of occupational therapy and speech feeding therapy “for the first time ever,” Hall laments. They are currently in the process of appealing. Arlington mom Holly D. Gray likes the current Cook Children’s Health Plan caseworker assigned to her 9-year-old daughter Caleigh, who has short bowel syndrome and cerebral palsy. But after a trip to Boston Children’s Hospital (a national hub for rare, childhood diseases) in April, Caleigh’s pediatrician had to rewrite all the orders and prescriptions Caleigh received there, as Texas Medicaid doesn’t cover out-ofstate services, her mom explains. Matt Cobb’s 8-year-old twins both have muscular dystrophy. One of the boys, William, requires a trach and a ventilator, which must be replaced monthly. Primary insurance doesn’t cover the ventilator but Med-

“IT’S A MISTAKE TO MAKE THE NEEDS OF THESE CHILDREN A HEALTH CARE ISSUE. IT IS A MORAL ISSUE.”

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icaid does at $3,000 a month. The Arlington family also keeps a backup ventilator, in case the regular one fails — another $3,000. “Beyond that, are several thousand dollars more each month in supplies and services (including therapy and nursing),” Cobb reveals. And those are the costs for just one of his sons. “It would be financially devastating not to have these resources.” Before STAR Kids took effect, parents were invited to attend question-and-answer sessions hosted by Health and Human Services. It was at these sessions that parents like Hall and others started talking to one another and sharing their issues with the program. This network of parents began to grow — and act — reaching out to elected representatives in Austin, networking with other parents across the state, and in a few short months, this grassroots group became Protect TX Fragile Kids. They hosted a rally in Austin last March and met with lawmakers. The goal? Visibility; participants wore red. Leeman, Victor, a few friends, Victor’s nurse and all of his critical support medical equipment attended. One family from San Antonio brought their son in his medical bed. STRENGTH IN NUMBERS

For most of these parents, advocating on behalf of their child is nothing new. From the day they received the diagnosis, they organized a team of health care providers and navigated the morass of insurance legalese. But for many, banding together with other parents for a larger cause is something new. “It’s not complicated,” says Hannah Mehta, Protect TX Fragile Kids’ executive director and a Flower Mound mom whose son, Aiden, a triplet, has a combination of birth defects including digestive and respiratory issues. “It’s a mistake to make the needs of these children a health care issue. It is a moral issue.” And so these parents started telling their stories, first to each other, then to friends and neigh-

bors, always expanding their circle of influence. “People can do small things that turn into big things,” explains Jill Bradshaw, an Austin mom with a 4-year-old daughter who has Charge syndrome and is deaf-blind. “I knew nothing when my daughter was born, but I got to know a lot of families, see their hardships, hear about their daily struggles.” She never set out to be a parent-advocate, but now she serves on the board of Allenbased Texas Chargers, Inc., an organization for those living with Charge syndrome. She’s also on the leadership team of Protect TX Fragile Kids. “I’m here because other families can’t be.” Hall reaches out to other parents of medically fragile children. “[I encourage them] to become advocates, to keep their children from losing their specialized care teams and services,” she says. She became a parent-advocate out of necessity. “I felt no one else was speaking for my son, for our family or families like ours.” Mara LaViola, whose 14-yearold son has autism, cerebral palsy, epilepsy and a mitochondrial disorder, has been active in public advocacy for over a decade. “You don’t have to be incredibly articulate,” the Frisco mom explains. “Speak from the heart.” STEPS TO MAKING A DIFFERENCE

Join a group and be informed. Whether it’s finding a disabilityspecific support group like Bradshaw did when she joined Texas Chargers or a more politically active organization, joining a group connects you with other parents who understand your journey and who can help put you in touch with resources and information. Put your talents to work. Gray, an artist, started an ongoing “One Day” project. She photographs a tray filled with 24 hours of medical waste from one child and turns the visual statements into postcards she sends to legislators — with an explanation of the image. Start a relationship with your representatives. “If you can go [to

Austin], go,” LaViola advises. If you can’t, get to know your local representatives when they’re at their home offices. “Make appointments to see them and introduce them to your child,” she adds. Share your story. Keep a draft of your personal statement handy. You can use it as a template for letters you draft to elected officials. And when Medicaid makes the news, use your statement as a calling card to send to local media outlets. Leeman calls her representatives whenever she gets a moment. “I was so nervous [when I first

started calling],” she laughs. “Now I call when I’m sweeping the floor or vacationing on the beach.” It would be tempting to think that with the failure of BCRA, the threat to Texas Medicaid is over. But the truth is, the future of Texas Medicaid is still so uncertain. Baby steps like the one made in the House help, but it’s not enough. And so even after a long day of caring for her son, Leeman sits down, not to relax, but to tweet #MedicaidMatters on his behalf or to post calls to action on various pages. “The fight never ends!” she says. t

Get Connected, Get Active! Joining with others is one of the first steps into public advocacy. This list of groups and resources is by no means exhaustive, but it’s a good place to start to become more publicly engaged on issues that impact the families in our community. PROTECT TX FRAGILE KIDS

ABILITY CONNECTION

Ability Connection provides A grassroots group of parent- a full range of services and education for children and advocates that strives to connect with policymakers and adults with disabilities. Sign reach out to local communities up on their website to receive about the impact of managed a newsletter with regular updates about news items that care on Texan families. They impact people with disabilities. have a very active Facebook community, where parents can Dallas, 214/351-2500; abilityconnection.org make local connections and receive regular updates about advocacy opportunities. COVER TEXAS NOW! protecttxfragilekids.org A coalition of organizations that promotes access to quality, affordable health care for THE ARC OF TEXAS all Texans. Discover how public With area chapters in Dalpolicy affects the lives of Texas las, Haltom City and Denton, residents on their site. The Arc of Texas advocates covertexasnow.org for the rights of Texans with intellectual and developmental disabilities. Find the Project TEXANS CARE FOR Move advocacy toolkit, which CHILDREN introduces newcomers to Based in Austin, Texans Care advocacy, on the website. for Children is a nonprofit, Dallas, 214/634-9810; policy-focused organization arcnorthtexas.org that works to promote the Denton, 972/436-8471; health and well-being of Texas arcofdentoncounty.org children and their families. Haltom City, 817/834-7700; Austin, 512/473-2274 arcmidcities.org txchildren.org

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S;( , Tour % deTexas Six state park campgrounds for fresh-air fun

e

T

WORDS JESSICA MYERS

e

he hot summer likely deprived you and your crew of lots of outdoor activities, including camping. Well, now that summer’s over (OK, not technically) and school’s back in session, we have an idea for you — six to be exact: Spend a weekend in one of Texas’ beautiful, family-friendly, accessible state parks with playgrounds, programming for children of all abilities and more. Whether your brood likes to pitch a tent or rest in an air-conditioned cabin, there are a number of campgrounds near (and a little farther away) to suit your family’s comfort, needs and interests — some sites loan rods and tackle boxes to young anglers, for instance. All admit kids 12 and younger for free and all lend littles Junior Ranger Explorer Packs with binoculars, pencils, watercolors and more. Book online at tpwd.texas.gov and have your older (13 and up) child’s disability card in hand to receive 50% off his entry fee.

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<100 Miles DINOSAUR VALLEY STATE PARK

Glen Rose, 254/897-4588 THE PITCH: Programs such as archery for kids 5 years and older, birding, dinosaur digs, river walks and painting with a ranger entertain children of all abilities in Dino Valley. On weekends (Friday– Sunday), Eagle Eye Ranch Carriage Company takes kids on 10-minute trail rides for $20. If your child uses a wheelchair, help lift him onto the saddle and walk beside the horse; reserve online or by phone. After dismounting, visit the accessible playground; walk


»

PHOTOS COURTESY OF DAVID OWENS; TYLER STATE PARK; BRIAN HEID

LAKE MINERAL WELLS STATE PARK & TRAILWAY

Mineral Wells, 940/328-1171 THE PITCH: Part asphalt, part crushed limestone, the 20-milelong Trailway is never too steep or treacherous for a ride or stroll. Since it was built on an abandoned railroad, its surface is even with gentle grades, and four trailheads offer accessible restrooms. Take a nocturnal hike to learn about the park inhabitants’ nighttime sounds, or attend story time on Saturday evenings with cowboy poet David Owens in the accessible amphitheater. GOOD TO KNOW: Call ahead to reserve one of the four accessible campsites with paved sidewalks,

and borrow rods, reels and tackle boxes from the check-in location to catch catfish, crappie, sunfish and bass from one of the six piers. COST: Accessible campsites with water and electricity, from $24 per day; adult admission, $7 per day NEARBY PERK: Take the kids and spend a morning 10 miles west at Mineral Wells Fossil Park to dig in the dirt for shark tooth fossils from 300 million years ago (or thereabouts).

<200 miles » TYLER STATE PARK

Tyler, 903/597-5338 THE PITCH: The Northside Day Use Area adjacent to the accessible playground with rubber flooring is the most popular area of the park for families because you can get to the beach and fishing pier via ramps. Catch trout, catfish and bass in the 64-acre springfed lake or rent a canoe, kayak, stand-up paddleboard or peddle boat. Or embark on the short, easy Whispering Pines Trail that leads to a shallow wading pool (not for swimming) where kids can observe tadpoles, frogs and snakes. Along the way, discover trees that produce natural bug repellent and flowers you can pickle and eat. GOOD TO KNOW: Explore every inch of the lake on the Lakeshore Trail (which is not wheelchair accessible) and cross the bridge with a view of a working beaver dam. There are two restrooms along the 2-mile walk and plenty of spots to picnic and rest. On Saturdays, children of all abilities join interpretive programs for lessons on bats, stargazing, park history, birds, forest ecology and more. COST: Accessible campsites with water and electricity, from $20 per day; adult admission, $6 per day

are made at the Southwest Dairy Museum just 25 minutes south of the lake. The accessible museum is open Monday– Friday 9am–4pm; docents offer guided tours by appointment.

NEARBY PERK:

The largest house made of salt can be found at the Salt Palace Museum in Grand Saline, 40 minutes west of the park. Join an accessible tour Monday–Saturday 9am–4pm.

COOPER LAKE STATE PARK — SOUTH SULPHUR UNIT

>200 miles GARNER STATE PARK

»

the cleared Children’s Trail with six lift-the-flap signs that teach kids about the park’s native species, including raccoons, skunks, deer and more; or traverse the wet, rocky riverbed (pack rainboots; the riverbed can be anywhere from 6–24 inches deep) in search of prehistoric tracks. GOOD TO KNOW: Every year, the park hosts the Mammoth Adventure Trail Run, a fundraiser for children with learning differences at Lake Pointe Academy in Granbury. Roll, walk or run 1 kilometer (just over half a mile) across the flat, mowed field on Oct. 14 starting at 7am. COST: Accessible campsites with water and electricity, from $25 per day; adult admission, $7 per day NEARBY PERK: Book a guided tour or steer your own safari ride along the 9.5-mile Scenic Wildlife Drive to see rhinos, giraffes and other animals at Fossil Rim Wildlife Center, 15 minutes south of the park. Open daily from 8:30am– 4:30pm; drive admission from $21.95 per adult, $15.95 per child age 3 and older. Guided tours from $30.95 per person.

Sulphur Springs, 903/945-5256 THE PITCH: The few remaining areas of Texan tallgrass prairie can be found two hours northeast of Dallas-Fort Worth on the south side of Cooper Lake. Walk the easy, 30-minute Honey Creek Trail, and use the Junior Ranger Pack binoculars to spot bald eagles, bluebirds, white-tailed deer, bobcats and beavers. Then head to the accessible amphitheater for Dutch-oven cooking demonstrations (with samples!), nature journaling, squirrel school (everything you ever wanted to know about the nut-loving creatures) and night programming such as Milky Way viewings and nocturnal animal sound identification. On warm days, book a guided one-hour canoe tour on the lake for $12 per canoe (each seats two) or rent a kayak from the new vending machines. GOOD TO KNOW:

Every camping loop has a number of accessible paved trails and picnic tables (one side extends further to accommodate wheelchairs). COST: ADA-designated campsites, from $18 per day; adult admission, $5 per day NEARBY PERK: Let kids see how ice cream, butter and cheese thrive

Concan, 830/232-6132 THE PITCH: Five-and-a-half hours southwest of Dallas-Fort Worth, camp along the Frio River at the Pecan Grove or Oakmont campgrounds, where kids find sand volleyball, an accessible basketball court and putt-putt golf for all ages and abilities. From here, gain access to the easy, half-mile Blinn River Trail that promises lots of wildlife sightings, or drive north to the Frio Canyon Trail, a dirt road more suitable for wheels. Rent a kayak and a life jacket to fish. And download the geocaching app to your smartphone to get the coordinates of hidden treasures (a terrain rating of 1 means the path to the cache is accessible). GOOD TO KNOW: There is only one ADA-designated cabin so reserve early by phone. COST: Campsites with water and electricity, from $22 per day; adult admission, $8 per day. ADA cabin, $143 per night for four people. NEARBY PERK:

From October to November, the maple trees of Lost Maples Natural Area, one hour north of the park, put on a colorful show. Make a day trip to see the striking leaves along the Maple Trail (which is not wheelchair accessible). september/october 2017

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P L AY

WORDS ELIZABETH SMITH

5

things to do in

september & october

Wheels & Water

Grapevine and Lewisville, 469/762-5075 riseadaptivesports.org

Rest up before a weekend of fun at RISE Skate & Ski Texas, a two-day sports party organized specially for those with physical disabilities and adventurous souls. Register online by Sept. 27 for one or both events: wheelchair skating at Lewisville’s Scion Skate Park on Sept. 30, and on Oct. 1, water skiing and boating at the RISE Adaptive Water Sports Park, a section of Meadowmere Park in Grapevine with a new dock exclusively for RISE athletes.

No Fear If neighborhood trick-ortreating has your child spooked, do a dry run at It’s a Sensory World. Boo Bash on Friday, Oct. 27, is designed for kids with sensitivities to practice by going trunk to trunk. Wear costumes for a shot at winning the costume contest. Free for trunk or treat. Carnival admission: $5 per child; free for adults. Dallas, 972/239-8100 itsasensoryworld.org

Stage Fright

Experience the thrill of the catch when the Northwest Tarrant Lions Club and Fort Worth’s YMCA Camp Carter open the gates to

Break out your Halloween costumes early when Dallas Children’s Theater opens Goosebumps the Musical – Phantom of the Auditorium, a comical cross between Phantom of the Opera and the books by fright master R.L. Stine. Call to reserve your seats for the American Sign Language-interpreted show on Oct. 1 or for the sensory-friendly show on Oct. 14 with brighter house lights, less sound and access to a quiet room. Tickets from $21; $5 for sensory shows. Dallas, 214/740-0051; dct.org/sensory Photos courtesy of RISE Adaptive Sports; It's a Sensory World; YMCA Camp Carter; Lawrence Jenkins; Penny Howard/Hope4Harper

Nature’s Click-bait

local families for the Special Needs Fishing Derby. The friendly competition begins at 9am on Saturday, Sept. 23. Bring your own gear, if you have it, or

For more events tailored to you, check the Special Needs Friendly option on our online calendar at dfwchild.com/ calendar.

High Hopes

borrow the camp’s

Join the Run4Hope Festival and 5K on Sept. 16 for pony rides, food trucks and a doughnut dash inside the kids’ corral. The sixth annual event at Trivium Academy carries on the legacy of Harper Elle Howard, whose parents founded the run when she was diagnosed with CDKL5. Though Harper died last year at age 5, the festival still funds groundbreaking research into CDKL5 and epilepsy. $40 for the 5K trail run; $25 for 1-mile; $30 for family pack or groups of four or more.

loaner poles and bait and stick around for the food and prizes. Free. Fort Worth, 817/738-9241 campcarter.org

Carrollton, 214/529-6952; hope4harper.com/run-4-hope thrive

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directory

JOIN

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 editorial@dfwchild.com.

AT A GLANCE 26 add & adhd 26 asperger’s & autism 26 cerebral palsy 26 child care 26 cystic fibrosis 26 developmental disabilities 27 down syndrome 27 dyslexia 27 epilepsy 27 equestrian therapy 27 fragile x 27 hearing impaired 27 mental illness 27 muscular dystrophy 27 obsessive compulsive 27 recreation 28 respite care 29 sibling classes 29 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. 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

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 spectrum disorders. Our Children’s Circle McKinney. Support group of parents, educators and community leaders that strives to provide resources for parents of children with autism spectrum disorders. Find them on Facebook.

CEREBRAL PALSY

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United Cerebral Palsy (UCP) 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.

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CHILD CARE

Achievement Center of Texas Garland, 972/414-7700; achievementcenteroftexas.org. Nonprofit day care and 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. Fully inclusive day care for nonaggressive children with special needs ages 0–12. Medications and breathing treatments can be given onsite if necessary. Children with special needs accepted case by case. BrightStar Care Multiple locations, brightstarcare.com. Offers in-home care for high-functioning children with special needs, including autism, cerebral palsy, spina bifida and more. Availability of services is evaluated on a case-by-case basis. Children’s Health Child Development Program Irving, 972/7908505; 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. 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, 817/424-9797; easterseals.com/northtexas. Provides a preschool program for children with autism ages 18 months to 6 years and typically developing children to learn alongside each other.

SUPPORT

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.

CYSTIC FIBROSIS

Blue Caboose Children’s Fund Dallas, 214/929-8281; 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, 817/249-7744; cff.org. Works to cure and control cystic fibrosis and to improve the quality of life for those with the disease.

DEVELOPMENTAL DISABILITIES

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 in the Activities Center at First Baptist Church in Richardson; email dallasfasd@ gmail.com for more information.

Denton County MHMR Center Denton, 940/381TEXAS CUTEZ / page 28 5000; dentonmhmr. org. Provides services to individuals with mental and behavioral health KinderFrogs School at TCU Fort care needs. Worth, 817/257-6828; kinderfrogs.tcu. edu. Early childhood program (ages 18 Easter Seals North Texas Fort months–6 years) designed to accomWorth, 888/617-7171; easterseals. modate children with Down syndrome com/northtexas. Centers in Dallas, and other developmental delays. Carrollton, Fort Worth and Grapevine provide services including outpatient Mary’s House Dalworthington Garrehabilitation, personal assistance, dens, 817/459-4494; maryshouseinc. autism programs and respite care for org. Provides before- and afterchildren and adults with disabilities school care (Monday–Friday), day and other special needs. habilitation, activities and therapeutic options for teens ages 13 and older Jewish Family Service Dallas, and adults with disabilities. 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. 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

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, 817/3902970; dspnt.org. Provides information; social and educational activities and events; and support for new parents, families and caregivers of those with Down syndrome.

DYSLEXIA

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; dal.dyslexiaida.org. Provides information and resources concerning learning differences to parents, educators, professionals and anyone who wants to be more informed about dyslexia. The group meets from 7–8:30pm on the second Monday of each month (except July). Discussion topics change monthly; check the website for the meeting topic and location.

EPILEPSY

Epilepsy Foundation Texas Addison, 214/420-2737; eftx.org. Nonprofit organization that strives to improve the lives of children and adults with epilepsy.

Photos courtesy of Texas Cutez; Equest

EQUESTRIAN THERAPY

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.

Born 2 Be Therapeutic Equestrian Center Aubrey, 940/595-8200; born2betec.org. Dedicated to safe and affordable horseback riding and carriage driving for children with disabilities through small-group or private lessons.

Advocating, Connecting, Educating and Supporting is the parent-led outreach initiative of Parent Project Muscular Dystrophy. FACES provides mentoring, 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.

Equest Dallas, 972/412-1099; equest.org. Works with riders to develop independent EQUEST / The nonprofit organization strives to help kids and skills that carry over adults with a variety of special needs through horse-assisted to their everyday activities and therapies, page 27 lives. Riders are enOBSESSIVEcouraged to set indiCOMPULSIVE vidual goals ranging OCD and Anxiety Support Group from holding the reins for one full and the use of physical, speech and DFW Bedford, ocdsupportgroupcircuit of the arena to more complex behavioral therapy. dfw.wordpress.com. Support group challenges, such as qualifying for and Victory Therapy Center Roanoke, for families and friends of individuals competing in the international arena. 682/831-1323; victorytherapy.org. with OCD and other anxiety disorders. Provides therapeutic riding, physical Grace Lake Ministries, Inc. Meets on the second and fourth therapy and counseling services Anna, 972/837-4621; gracelakeminisThursday of each month (except on through the relationships riders form tries.org. God-centered therapeutic holidays) from 6:30–8pm at Texas with horses. riding program with the goal of Health Harris Methodist Hospital developing wholeness in the lives Hurst-Euless-Bedford. of the people served. Riders include FRAGILE X anyone in need of hope and healing, Texas Fragile X Association Dallas, RECREATION including children and adults with 972/757-8939; txfx.org. An associaAngel League Baseball Program disabilities or social challenges. tion made up of families and profesRockwall, 972/722-6001; angelsionals who provide resources and ManeGait Therapeutic Horseleague.org. Baseball program for education on Fragile X issues. They manship McKinney, 469/742-9611; boys and girls with physical or mental organize family activities and educamanegait.org. Provides a fun, enrichdisabilities ages 4–15 and adult tion events throughout the year. ing and supportive environment for league for individuals with mental riders to reach their potential. Offers disabilities ages 16–60. HEARING IMPAIRED group, semi-private or private lessons Aqua-Fit Swim & Fitness Family Deaf-Blind Multihandicapped taught by certified riding instrucWellness Center Plano, 972/578Association of Texas (DBMAT) tors with the assistance of volunteer 7946; aquafitplano.com. Aqua-Fit’s Dallas, 972/285-5912; dbmat-tx.org. aides. As much as possible, riders Mimi Conner offers swimming lessons The mission of DBMAT is to promote participate in pre-mounted and postfor adults and children with special and improve the quality of life for mounted horse care. needs on Saturday and Monday. all Texans who are deaf-blind multiRiding Unlimited Inc. Ponder, 940/ handicapped. DBMAT provides deafAqua-Tots Swim School Multiple 479-2016; ridingunlimited.org. Provides blind multi-handicapped individuals locations, aqua-tots.com. Offers the small-group and individual lessons for and their families access to other basic survival swim program and a ages 3 to adult. Students can particimembers, training opportunities, beginning stroke development class pate in exhibition and drill teams. social events and resources. for children with special needs. Stable Strides Farm Therapeutic ASI Gymnastics Multiple locations, MENTAL ILLNESS Riding Flower Mound, 940/595-3600; asigymnastics.com. Offers GymMental Health America of Greater stablestridesfarm.org. Children and mie Kids, a recreational gymnastics Dallas Dallas, 214/871-2420; mhaadults ages 2 and older with physiprogram designed to enhance motor dallas.org . Offers multiple support cal or cognitive disabilities learn to skills, provide social interaction and groups at varying times. become effective, competitive riders. build the self-esteem of children with Students are encouraged to ride National Alliance on Mental Illness special needs. independently as soon and as safely (NAMI) Dallas, 214/341-7133; namias possible. Bachman Recreation Center Dallas, dallas.org. NAMI Texas, 512/693-2000; 214/670-6266; dallasparks.org/facilinamitexas.org. Provides support and Unbridled Horse Therapy Flower ties. Provides an accessible facility education to families and friends of Mound, 469/319-2599; unbridledfor all individuals ages 6 and older people with serious mental illness. horsetherapy.com. Aims to effectively with disabilities. intercede and encourage unrealized potential for those with special MUSCULAR DYSTROPHY Best Buddies Statewide, 214/242needs and disabilities through the FACES of North Texas 800/7149908; bestbuddies.org/texas. Proconnection between horse and rider 5437; parentprojectmd.org. Families vides opportunities for one-to-one

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directory 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; sports include basketball, baseball, soccer and field hockey.

Register online at www.cscfw.org Registration 7:00 am 1 Mile Fun Run 8:00 am 5K & 10K 8:30 am Awards in multiple categories by age group and overall winners. 5K and 10K are certified races.

SATURDAY, OCT. 14, 2017 Amon G. Carter Stadium Texas Christian University

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, 817/5527946; 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 Dallas and Frisco, 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 (MAWS) 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, 817/7336076; mldfw.org. Provides an opportunity for children with physical or mental challenges to play baseball. Miracle League of Frisco Frisco, 214/295-6411; friscomiracleleague.org. Offers a variety of sports for children ages 5–19 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.

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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.

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Soaring Eagle Center DeSoto, 972/223-1873; soaringeaglecenter.org. Serves young adults with developmental disabilities and their families through 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 (SWAA) 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 and up). 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.

RESPITE CARE

Adventure Kids Playcare Multiple locations, adventurekidsplaycare.com. Offers hourly dropin child care that is inclusive to children with special needs. 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, 817/481-2559; 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 support services for children affected by HIV/ AIDS and their families as well as children with other special health needs.


services SPECIAL ADVERTISING SECTION

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 on the third Friday of the month. 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. 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. Loving Hands Ministry Coppell, 972/462-0471; fumccoppell.org. Respite care for children with special needs up to age 16 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.

a resourceful guide for your special needs NOW OFFERING SPEECH THERAPY! Behavioral Transformations is a leading provider of ABA and speech services for individuals with autism. We believe every child is an individual who can learn given the right environment and teacher. We strive to develop relationships with our clients as well as their families. Behavioral Transformations 2701 Sunset Ridge Dr. Ste. 303 Rockwall, TX 75032 469-458-9021 • www.btrockwall.com

Movers, Makers and Gizmo Makers Summer Camp Summer Day Camp is a theme based, fun and safe environment with opportunity for movement, problem solving, positive social skills and friendship development with emphasis on ABA principals. ABA Therapy • Indoor Gym • Social Skills Take action and save your spot today! Marigold Learning Academy 401 W. Washington St., Rockwall, TX 75087 972-722-3892 • MarigoldLearningAcademy@gmail.com www.MarigoldLearningAcademy.com

No Limits, Just Possibilities Notre Dame School educates students with developmental disabilities and facilitates their integration into society. As the only school in Dallas exclusively serving this student population, Notre Dame is a unique educational resource with 160 students ages 8–22. You are invited to attend our fall Open House on November 14 at 9:30–11am. RSVP to Cindy at creynolds@notredameschool.org.

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.

Notre Dame School of Dallas 2018 Allen St., Dallas, TX 75204 214-720-3911 notredameschool.org

SIBLING CLASSES

A Piece of Your Autism Puzzle

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 available for parents and children to check out.

Speech TX is a private practice providing speech-language assessment and intervention, specializing in pragmatic language disorders and individuals with autism. Located in West Plano and traveling to day cares/private schools depending on availability, sessions are tailored to meet students’ unique needs and are dependent on parental involvement.

Cook Children’s 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.

HEROES Sibshops Richardson, 972/663-5853; heroesdfw.org. Program for the siblings of children with disabilities to participate in fun and exciting activities in a safe environment.

TOURETTE’S SYNDROME

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.

t

Speech TX Julie Liberman, M.A., CCC-SLP 214-336-9342 contactspeechtx@gmail.com To advertise in the Services section, call 972-447-9188 or email advertising@dfwchild.com

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life goes on

W

e’re just getting back into the back-to-school groove. We sent our youngest, Ethan — and his nurse — to the second grade. Our daughter, Kiersten, just started the fifth grade, and Nick, our oldest, ages out of the system this year; he turns 22 in October. Beyond different grades, our three very different children have very different needs. Our two boys receive special education services, and Kiersten has a 504 plan (she has ADD and anxiety). We look at these remarkable teachers, therapists, counselors and so much more as partners in this year’s journey for each of our children. These people are responsible for so much, but it’s important to remember that these educators are human too. We always hope that some of the staff members remain the same. Those individuals already know our children well. New teachers, therapists and counselors need time to learn what motivates each of our children, what needs they have and how to meet them and how to differentiate the instruction to make sure my children are successful in their respective classrooms. As an educator myself, I understand the Texas teacher struggles — the lack of support and funding — and what that translates to inside the classroom. Each new school year brings high expectations from parents and educators alike. As parents, we need to pick our battles thoughtfully. Believe

30

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Back to School WORDS JOSH SCHILLING

me, my wife and I could start each year with a list of about 100 things we want addressed, but we maintain perspective and focus on what’s really important — our kids’ health, safety and maximum participation in each of their classrooms. From the other side of the desk, as an educator who has taught in multiple districts, I can say that most of my students’ parents are like my wife and me and want to partner together to make their child’s year successful. But there are always a handful of parents with the highest of expectations that border on unrealistic. You probably know them. (Hopefully you aren’t one.) These parents

september/october 2017

make a huge deal because their high school student didn’t write down their assignment; they expect for us, the teachers, to do that for them. Or the parents become angry because the classroom can’t accommodate their child’s diet — a diet of choice, not necessity. I believe that kids in general education high school classes should be responsible for their own assignments; they’re almost adults. And as for those classroom snacks? Those aren’t required by districts — they come out of the teachers’ pockets, and teachers typically need to stretch their dollars as far as they will go.

“As parents, we need to pick our battles thoughtfully.”

SHARE

So my advice to parents? Do what my wife and I do: Prioritize the top five issues for each of your kids. For example, Nick and Ethan both require nursing support. Nick gets it round-theclock; Ethan receives it during the day, every day. Their needs are unique, and it is vital for their health and safety, and for them to participate fully in their instruction, to have nursing care. So when one of their nurses passed away and another nurse was away, my boys missed over a month of school. No one from the school bothered to call or check in on the kids or share that they were ready, willing and able to support them. Another example: How do teachers accommodate a reading assessment for a nonverbal child? How does the teacher know what my son is comprehending? The teachers struggle with how to make sure accommodations are met in order to see the true level and where support is needed. These are the issues that we devote time and energy to; we let the little stuff go. Educators literally put their blood, sweat and tears into their jobs for your children. We clearly don’t do it for the money. We do the best we can with the resources we have. So, parents, when you’re preparing to send an email or make a phone call to request a conference with your son or daughter’s teacher, please ask yourselves if the request you have is something your child needs or it’s something that you want.

©iStock.com/Maltiase

REFLECT


Pediatric Nursing and Therapy

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Thrive September/October 2017  

A resource for families living with learning differences and special needs

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