thrive DALL AS-FORT WORTH
VOL. 10 ISSUE NO. 1
JANUARY/ FEBRUARY 2018
A RESOURCE FOR FAMILIES LIVING WITH LEARNING DIFFERENCES AND SPECIAL NEEDS
MEET KATE & KEVIN
THE ENTREPRENEUR ATTORNEY AND HER SON
MUST-HAVE SPECIAL NEEDS RESOURCES
ANXIETY & AUTISM THEREâ€™S A GOOD CHANCE YOUR CHILD HAS BOTH
HOW TO CREATE A SPECIAL NEEDS TRUST
5 EVENTS FOR THE WHOLE FAMILY PUBLISHED BY
Your child’s care should be
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VOL. 10 NO. 1
18 THE ANXIETY LINK
Anxiety and autism often go hand in
hand, but getting separate diagnoses— and effective treatment—is still a challenge words Julissa Treviño
thrive DAL L AS-F O R T WO R T H
VOL. 10 ISSUE NO. 1
7 How To Create a Special Needs Trust 8 Home Away From Home 8 Learn To Earn 8 Play in Progress
JANUARY/ FEBRUARY 2018
A RESOURCE FOR FAMILIES LIVING WITH LEARNING DIFFERENCES AND SPECIAL NEEDS
MEET KATE & KEVIN
THE ENTREPRENEUR ATTORNEY AND HER SON
11 Mom Next Door: Kate Cassidy 14 Modern Matchmaker 14 Sound Advice: Counsel & Criticism 14 The Best Defense 16 Mommy Diary: Heidi Angel
30 Life Goes On words Josh Schilling
23 5 Things To Do in January & February
MUST-HAVE SPECIAL NEEDS RESOURCES
ANXIETY & AUTISM
HOW TO CREATE A SPECIAL NEEDS TRUST
5 EVENTS FOR THE WHOLE FAMILY PUBLISHED BY
THERE’S A GOOD CHANCE YOUR CHILD HAS BOTH
PHOTOGRAPHY Carter Rose
25 Directory of Special Needs Resources
staff box Publisher/ Editor-in-Chief Joylyn Niebes
CALENDAR EDITOR Elizabeth Smith
GRAPHIC DESIGNER Susan Horn
EDITORIAL DESIGNER Katie Garza
MANAGING EDITOR Carrie Steingruber
ART ASSISTANT Sara Strugger
ACCOUNT EXECUTIVES Nikki Garrett, Nancy McDaniel, Kristen Niebes, Sandi Tijerina, Laura Vardell, Kerensa Vest
ASSOCIATE PUBLISHER Diana Whitworth Nelson
ADVERTISING COORDINATOR Amy Klembara
AUDIENCE DEVELOPMENT DIRECTOR Candace Emerson PROMOTIONS COORDINATOR Beth McGee 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 ©2018 by Lauren Publications, Inc. All rights reserved. Reproduction in whole or part without express written permission prohibited.
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.
A Department of Texas Health Center for Diagnostics & Surgery
(214) 778-3000 (972) 419-8190
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.
TYPES OF SPECIAL NEEDS TRUSTS
Third-party special needs trust: This type of trust is funded by someone other than the beneficiary, such as a parent or grandparent. Self-settled or first-party special needs trust: This type of trust is set up by a family member or the court, but funded by the beneficiary, perhaps through inheritance or a lawsuit. For example, if your child wins a legal settlement, he or she can put the money in a trust rather than own the money outright. ABLE account: Signed into federal law in 2014, the Achieving a Better Life Experience (ABLE) program offers tax-free savings accounts that can be used to pay for disability-related expenses without affecting your child’s eligibility for government programs. ABLE is still in development in Texas, but programs in states including Oregon and Colorado are already up and running and will allow nonresidents to open accounts. WHO IS INVOLVED
Administering a special needs trust is complicated. The trustee—usually a parent, sibling or close friend—must have a clear understanding of government programs as well as the beneficiary’s needs to make sure the trust enhances, not hurts, his or her quality of life. Hands-on Help As Hodgson can attest, it takes CONNECTING a lot of work, on top of her other THE DOTS EXPO responsibilities. “None of this hapFree informational fair with pens in a vacuum,” she says, which vendors, breakout sessions may be why many parents, like ing your child from public with experts, and family me, keep putting it off. benefits such as Supplemental fun activities. Rockwall, Luckily, we don’t have to Security Income or Medicaid. Feb. 3; Denison, Feb. 17. 972/348-1700; region10.org make it a full-time job as long as That’s why a regular savwe build a network of people to ings account might not be TAVAC CONFERENCE help. Your team should include good enough: Currently, a Booths, vendors, classes an attorney, a financial adviser person with special needs canand breakout groups on and family members who will be not have more than $2,000 in guardianships, transition planning, social security and caring for your child. “Patience assets and still receive governMedicaid. $250. Fort Worth, in the process of determining the ment aid. Mary Anne Mayer July 31–Aug. 2. tavac.org right team is essential,” Mayer Redmond, a certified financial Redmond says. “You will work planner in Addison, explains LIFE STRATEGIES with this group of people to make that unlike a regular savings WORKSHOP Two-day workshop on many life decisions.” account, a trust does not count social services, regulations, Ask people in your network for toward that $2,000 cap and estate planning and legal recommendations or contact your so will not affect your child’s processes. $499 for two county bar association and ask for eligibility for benefits. people, which includes the a referral. Many attorneys will offer A trust also provides a workshop and follow-up a free initial consultation. If you way for your child to inherit support. Irving, Feb. 17 and April 7. 972/964-3444; want to learn more before diving without losing benefits. “There forfamiliesofspecialneeds.com/ in, local nonprofits host workshops is nothing worse than seeing workshop.html (see sidebar) to help you understand an individual lose government your options. In fact, the hardest benefits because of outright part won’t be putting the team toinheritance of money,” Haiman gether, but just saying yes to beginning the process. says. But by naming the special needs trust, in“Parents get depleted,” Hodgson admits, “but I want stead of your child, as beneficiary, you can ensure to provide a quality life even after I am gone.” that your child’s benefits remain intact.
how to create a special needs trust WORDS ANGELLE GREMILLION
ILLUSTRATION JADE JOHNSON
etween doctor and specialist appointments—and, well, life—there seems little energy left to plan for your child’s financial future. Creating a trust for my daughter with special needs has been on my to-do list for years, and I feel guilty that this chore always gets pushed to the bottom of the pile. “Proper planning not only saves money but reduces stress,” says Fred Haiman of Haiman Hogue Attorneys in Frisco, who specializes in helping clients set up special needs trusts. “Not planning in the first place is a problem.” Maggie Hodgson, who lives in Sachse, says she’s so glad she finally made a trust for her 24-year-old son with Down syndrome, even though managing the trust has added more to her already full plate. “You never know when you’re going to die,” she says. “It’s like setting up a will. It’s part of being a responsible parent.” When your child becomes an adult, Medicaid will pay for some medical costs, but it will not cover additional items such as eyeglasses, dental work and rehabilitation services. Nor will it cover personal expenses like haircuts or a night out at the movies. A special needs trust can provide the financial support for these needed and wanted items—without disqualify-
WORDS NICOLE JORDAN
home away from home
2 1 // Srin Madipalli cofounded Accomable. Now he and his site’s accessible travel listings are moving to Airbnb. 2 // Airbnb’s new filters will make it easier to find accessible accommodations like this B&B in Dripping Springs.
Big news for travel junkies:
disabilities. You’ll be able to find
Airbnb just acquired Accomable,
properties with features that
an online listing service with
cater to your child’s specific travel
hundreds of accessible proper-
needs, including step-free access,
ties in more than 60 countries,
roll-in showers, grab rails and
including a few in Texas. As part
tools for people who are blind or
of the deal, Airbnb is absorbing
hearing-impaired. Hello, weekend
those listings and debuting new
getaway. Learn more about the
filters to support travelers with
new features at airbnb.com.
Play in Progress
Paying bills, budgeting, making investments— they’re real-world skills that are essential to being a financially healthy adult. But many kids grow into adults without a clue about any of it, and many young adults with special needs are unable to get that real-world experience through a traditional job. BusyKid prepares them for independence by putting them to work (doing chores for you, of course) and teaching money skills in an accessible and fun way. The interactive, digital interface, which works on all mobile devices, features a chore chart and allowance platform through which kids can spend, save, invest and donate their hard-earned dollars, all under your watchful eye as they learn. Think of it as their first job with direct deposit. And at $14.95 a year per family, it’s a financially sound decision for you, too. BusyKid, 14.95 per year busykid.com
Plano unveiled an impressive all-abilities playground last year, but the Dallas-Fort Worth area still has work to do before every family lives close to to a playground that’s accessible to children of all abilities. So local communities are stepping up and doing their part, fundraising and securing grants to cover the extensive costs—building any playground is a pricy endeavor, especially one featuring everything from ramps and therapeutic swings to wheelchair-accessible gliders. Join the effort by spreading the word about these three works in progress, which have already been designed and are just dollars away from being realized. // Bonnie Wenk Park, McKinney Join the Rotary Clubs of McKinney in
developing phase II of Bonnie Wenk Park with a specialized playground and equipment. Visit rotaryplayground.com. // Cottonwood Park, Richardson Richardson East Rotary Club is raising funds to replace the playground at Cottonwood Park. Gifts in all amounts are welcome. Visit richardsoneastrotary.org. // Dream Park, Fort Worth Located in Trinity Park, Dream Park will be Fort Worth’s first truly accessible playground. Visit dreamparkfw.org.
Photos courtesy of Srin Madipalli/Airbnb/Accomable; iStock.com/Maltiase; Dream Park/R. Frye
LEARN TO EARN
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Mom Next Door
5; and Claire, 4—and the happy the flexibility to drive them wherever they need chaos ensues. Kevin, who has to go and spend time with them during the day. autism, begins his day at White I love the freedom of doing what I want when Bridle Learning and Therapy in I want. It’s really lowered my stress level. I’m a Keller, while the youngest head to better mom for it.” a nearby Montessori school. Before striking out on her own, the Meanwhile, Cassidy, Southern Methodist University law 42, hits the ground school alumna worked in legal running, overseecounsel for the Dallas Stars “You can’t ing the day-toand the Texas Rangers. It was feel guilty about day operations a job she loved for more of Lotus Legal than a decade. But as her taking an hour to take Search LLC, family grew, the 60-hour care of yourself because the boutique legal search and workweeks became placement firm she launched unmanageable. you’re a better mom last year. With offices in DalWhen Kevin began the other 23 hours las and Denver, Lotus Legal regressing at age 2—losing you’re with your assists attorney candidates seekhis speech and struggling ing employment and employers with an increasing number of children.” seeking talent across the country. health issues—Cassidy’s stress “I just needed more time for my level skyrocketed. children,” she says of deciding to launch her By the time Kevin was 2 1/2, the own business. “It’s been really fantastic to have autism diagnosis was official, and so were
Kate Cassidy WORDS NICOLE JORDAN
PHOTOGRAPHY CARTER ROSE
t’s Friday afternoon and Kate Cassidy just did something she never imagined doing: She brought home a bearded dragon and its lunch—live crickets and worms—at the behest of her kids. “Life’s a circus,” the Arlington mom says. “But a happy circus. I survive on happy chaos. There’s always something going on.” Every day at 6:30am, the single mom wakes up in bed with her three kids—Kevin, 6; Don,
ABOVE / Since Kevin, 6, was diagnosed with autism, single mom Kate Cassidy has strived to create a healthy lifestyle for her family of four.
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was the answer we needed.”
diagnoses of an autoimmune and thyroid “I knew I needed to do something,” she disorder. As the family traveled from coast to says. “So I started doing more yoga and coast searching meditation, for answers, which has medical bills helped hugely.” crept into six Cassidy figures—and honed her mediCassidy’s tation practice marriage at a pricey began to transcendental crumble. meditation “It was a course in Santa very difficult Fe, but now she year and all the relies on the $10 stresses very app Headspace. much led to She likes to think our divorce,” of meditation as says Cas“a bath for the sidy, who now mind” and dedisuccessfully cates 10 minutes co-parents twice a day to ABOVE / Kate Cassidy says life’s a happy circus with with her exher practice. her three kids: Kevin, 6; Don, 5; and Claire, 4. husband. “I “You can’t got through feel guilty about that grieving process within a year or so and taking an hour to take care of yourself because I’m in the loving and accepting stage now.” you’re a better mom the other 23 hours you’re It took time. Holding out hope that with with your children,” she asserts. “Self-care is the right treatment Kevin might recover from so important. I’m finally doing a good job at autism, Cassidy waited nearly three years it, and I’m a better mom because of it.” before “going public” with his diagnosis. Today, Cassidy describes herself as “It can feel shameful at first,” she explains. “happy, balanced and in control.” In addition “You don’t want to share that you’re not to self-care, she’s realized the importance of a perfect, but I’ve gotten so much support and solid support system. freedom from sharing our story. I don’t feel To help navigate life as a special needs like I’m hiding our real life from the world parent, Cassidy relies on a network of moms anymore. It’s been incredibly freeing.” she connected with through Facebook. She Now, Kevin is thriving—in his own way. donates time and money to various autism He’s still nonverbal. And he still faces health organizations, from Talk About Curing issues. But he’s happy. “He’s a great reminder Autism (TACA), a nonprofit dedicated to that simple pleasures are the best,” says educating and supporting families affected Cassidy. Seemingly little things like walks, by autism, to Dream Park, a Fort Worth swimming and jumping on a trampoline are playground for children of all abilities. great sources of joy. Giving back is a nonnegotiable for CasTo address Kevin’s food and environsidy. In fact, 10 percent of her company’s mental sensitivities, Cassidy did a complete gross revenue goes directly to charity. overhaul of the way her family eats and lives. “I’m doing well, and I like to share with She installed water and air filtration systems others that are in need, especially in the and hired a chef to specially prepare organic, autism community,” she says. “Ultimately, I’d gluten-free meals for Kevin. Everything in like to establish a charity that gives free care the house is nontoxic, even the lawn fertilto autism families. Everyone needs a break.” izer they use. It’s just one of many things Cassidy would “I wish I had implemented all that like to accomplish. When talking about the before I got pregnant, and who knows, future, she’s optimistic. Her business is thrivmaybe it would have helped his health ing, and she’s excited to see where it goes. problems. I’ve learned so much about being She’s dating and has dreams of buying land a healthy person.” with room for Kevin to live independently as She’s learned a lot about being a healthier an adult. She’s passionate about continuing to person mentally, too. Last year, the pressure give back to the autism community she once of being a single mom of three and growing hesitated to identify with. a brand-new business became too much. “I used to be pretty rigid and things had Despite the newfound flexibility of being her to be perfect. That’s absolutely impossible in own boss, Cassidy was more stressed than my current life. I’m much more empathetic ever, experiencing physical manifestations and accepting. I’m just enjoying things as like chest pain. they come.” t
Pediatric Home Health Speech, Occupational & Physical Therapy Serving Children Ages: 0–21
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• 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
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Hello Mamas // $4.99 from the Apple App Store and Google Play // hellomamas.com Peanut // Free from the Apple App Store and Google Play // peanut-app.io
Somewhere around middle school, making new friends evolved from an effortless affair to a complicated enterprise. Fast forward several years and add grown-up responsibilities, a busy family and a full-time job to the mix, and it can seem virtually impossible. Enter our latest tech obsessions. Specifically designed to connect busy moms, apps like Peanut and Hello
Mamas operate like platonic Tinders. Connect with moms near you who share similar interests (and understand life with special needs) for playdates or moms night out or even just to have a phone-a-friend in your back pocket when you need a little support. Whatever you’re searching for, this decidedly modern approach to making friends is a must-try. —Nicole Jordan
the best defense
Sally Fryer Dietz, PT, DPT, CSTD, SIPT cert., is the founder and director of Integrative Pediatric Therapy in Dallas and author of When Kids Fly! Solutions for Children with Sensory Integration Challenges. Visit iptkids.com or whenkidsfly.com.
Looking to learn something new? Empowering as they are practical, self-defense classes help women learn to protect themselves and others while getting a great workout and releasing stress to boot. From krav maga (the official self-defense system of the Israeli Defense Forces) to boxing and Brazilian jiujitsu, classes teach physical skills derived from mixed martial arts plus psychological tactics to mitigate potentially dangerous situations. Prices at these local studios vary, with classes ranging from weekly drop-ins to weekend workshops: Academy of Combative Warrior Arts (ACWA); 1740 N. Greenville Ave., Richardson; 469/939-2462; womens-
selfdefenseclasses.com // Chamberlain Studios of Self Defense; 2739 Bachman Drive, Dallas; 214/366-3916; 2114 Kidwell St., Dallas, 214/351-5367; dallaskenpo.com // Fort Worth Combatives; 5512 River Oaks Blvd., River Oaks; 817/455-8387; fortworthcombatives.com // Keller Self Defense and Krav Maga; 5824 Kroger Drive, Fort Worth; 682/233-5728; kellerselfdefense.com // Krav Maga DFW; 1201 Turtle Creek Blvd., Dallas; 2650 Midway Rd., Suite 204, Carrollton; kravmagadfw.com // Texas Defense Academy; 2911 Race St., Fort Worth; 682/558-7791; texasdefenseacademy.com —N.J.
Photos courtesy of William J. Neal Photography; iStock.com/Fotosmurf03; Illustration by Mary Dunn
You are constantly juggling schedules to meet the needs of your family, you have changed your family’s diet to accommodate for recently discovered food allergies, and you are a regular at the therapy clinic … so, how do you handle your emotions when someone tells you how to do it “better”? 1. Educate: Most people mean well, they just may not understand the total picture. Share your child’s strengths and weaknesses. Create opportunities for people to see firsthand what you and your child are working on. 2. Ask them for help: Wellmeaning people are usually only trying to help. Talk about how you can work together to support your child’s needs. Invite them to watch your child while you run some errands (and get some welldeserved time on your own). 3. Take time for yourself: Everyone needs a break, even before stress hits. Exercise is a great way to naturally stimulate those good endorphins. Take a brisk walk around the block, push a stroller or pull your child in a wagon. 4. Be kind to yourself: Remember you are doing the best you can. Criticism from others typically has more to do with them than with you.
SENSORY-FRIENDLY CLASSES AT A creative dramatics program for young actors with unique minds, talents and imaginations.
Jan. 12 - Mar. 2, 2018 COMEDY CLASS LOL! This is an integrated class for all students ages 13-17 who love comedy!
The Novus Academy provides an accredited and customizable educational program to students with learning differences and challenges, such as: ADD/ADHD; depression; anxiety; dyslexia; dysgraphia; and other language-based disorders. Our nurturing, innovative, and stimulating learning environment inspires confidence, respect, and self-worth in our students. They are supported as individuals through a variety of multi-sensory approaches and taught how to remove barriers to success. If your child is struggling in a school or system that is not catering to their specific needs or strengths, please call to schedule a tour and see our MAGIC in action!
TheNovusAcademy.org 204 N. Dooley St. Grapevine, TX 76051
• We invite our youth with sensory processing disorders as well as typically developing students to join us as we explore the world of comedy and clowning! • Tell jokes, learn comedy routines, try out some classic clowning gags! • Invite family and friends to a comedy show on the final class day.
Apr. 16 - May 7, 2018 MINI SESSION – ACT IT UP!
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for 4-week session
Work with DCT theater professionals and explore theater and creative drama with your class. Take on characters, act out scenes, explore emotions as you - ACT IT UP!
for 8-week session
Ages 8-12 Mondays 4:15 - 5:30 p.m.
QUESTIONS OR WANT TO ENROLL?
Contact Gina for more information 214-978-0110 ext 138 or email@example.com Scholarships available. Call for details.
SENSORY-FRIENDLY SPONSORS INCLUDE
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ANONYMOUS THE AILEEN AND JACK PRATT FOUNDATION W.P. & BULAH LUSE FOUNDATION Local community partners include the Center for Autism and Developmental Disabilities at UT Southwestern, University of North Texas Department of Speech and Hearing Sciences and the Health Science Center and the Autism Center, Children’s Health and the Dallas Museum of Art.
A Day in the Life of HEIDI ANGEL
A former teacher and current attorney, Heidi Angel and her husband, Rich, have been married for 17 years, and they have two daughters, Natalie, 7, and Emily, 5. Emily has Down syndrome and attends the KinderFrogs School at Texas Christian University. Heidi also serves as legal counsel and as a board member for the Down Syndrome Partnership of North Texas. In her spare time she runs, hikes, bikes and generally likes to be outside.
:20AM The alarm goes off and I’m out the door early to run with an old friend—one of those friends you can really be honest with so this time together is the best way to start off my week. Other days I sleep a little later depending on whether I am working from home that day and whether Emily wakes up earlier (sometimes she just has to make a pretend cake with me at 5:30am). 6:30AM I take a shower and make coffee before the kids wake up. 6:55AM Time to wake up the kids. Rich helps with breakfasts and lunches— rarely are we organized enough to make lunches the night before, and I have been known to throw a frozen burrito and a banana into a lunch bag in a pinch. 7:35AM Rich and Natalie are out the door to meet up with the “walking school bus.” (A parent leads the walk to our neighborhood school each morning on a set route.) I stay inside to try to convince Emily to put on her shoes herself and carry her backpack to the car. Her socks feel “wiggly” today so we rearrange them a few times until I finally tell her we will fix them when we get to school, hoping she might forget about the wiggling (She does! One point Mama!). She requests to listen to Moana songs in the car and tells me repeatedly to stop singing. 7:45AM I drop off Emily at KinderFrogs and get a huge smile and wave from one of the teacher-supported class-
room aides who works at the school, and I soak up all the happiness I possibly can from that wonderful place. Then it’s time for me to make the drive to my office in Dallas. 9AM My law practice focuses on wills and trusts and special needs planning, and today it begins with a phone call from a mom who wants to discuss guardianship options for her soon-tobe 18-year-old son with Down syndrome. We talk about alternatives to guardianship and try to find a good fit. I enjoy walking families through these tough decisions. Having alternatives such as supported decision-making agreements available has empowered many adults with intellectual/development disabilities, which is exciting. 1PM After grabbing lunch out, I have a will-signing ceremony and then a phone call with a potential client who wants to set up an LLC for a small business. Another attorney in the firm briefs me on some research he needs done, and I get started on that before leaving for the day. 4:15PM Leaving now means I miss rush-hour traffic. Meanwhile, Rich picks up the girls from school and takes Emily to her soccer practice. Other days of the week our beloved babysitter and friend helps with the girls. 5:30PM I work on dinner preparations while the kids watch TV. (Lately, they always want to watch Odd Squad—at least they can both agree on this one!) I take a walk around the neighborhood with the girls after dinner while Rich cleans up the dishes. Emily has a propensity to run off so I wear my running shoes to keep up with her. We linger outside chatting with our neighbors a little too late and then finally run in for bath time. 7PM The girls take baths, which looks a lot like the book The Pigeon Needs a Bath!—no one wants to get in, and then no one wants to get out. After baths, Natalie grabs a book to read in bed and starts listing all the words she knows in alphabetical order (even though I keep telling her she knows thousands of words). Emily is asking Rich to read Elmo’s My Big Book of Firsts to her. This one has been on repeat for quite a while and is falling apart, and we are kind of hoping to spark interest in something else soon. Rich says goodnight and then I stay and sing some songs with Emily. I scratch Natalie’s back and give last kisses for the night. Natalie wants to read a little longer so she uses her camping headlamp. Emily seems to fall asleep faster with the little light on,
Photo Courtesy of Angela Weedon Photography
rm: M O M M Y
All About Heidi
What she’s reading No Greatness Without Goodness by Randy Lewis. This book was written by a corporate executive and father of a son with autism. The book has good data in support of employing people with disabilities and the value of all people being included in the workforce.
Dental Care for your Special Loved One Anna Willison, DDS
People with disabilities often need special care to maintain their dental health.
What’s on her DVR Born This Way
Dr. Willison is a member of the Special Care Dentistry Association and is trained to provide her patients the attention and care they deserve. Our state-of-the-art office with trained staff is available to treat most of our patients.
Favorite date night spot The Usual Guaranteed to make her laugh “You Made It Weird with Pete Holmes” podcast; anything with Amy Poehler
In-office sedation is available by a board certified anesthesiologist. Dr. Willison is also on medical staff at the Medical City Hospital in Dallas, where she can safely complete the necessary dental treatment under general anesthesia in the operating room.
Guaranteed to make her cry Cara Jacocks’ TED Talk, “Socially Constructing Down Syndrome: Confessions of a Rockin Mom” Greatest fear People underestimating my daughter with Down syndrome, the effect that this also has on my typically developing daughter and the difficult future that this creates for both of them.
We recognize that caring for special needs patients takes compassion and understanding. We focus on meeting those needs, both for the patients and the care givers.
Dallas Center for Oral Health & Wellness
Where to find her on girls night out WineHaus or Grand Cru
Medical City Hospital Dallas, 7777 Forest Ln., Ste. A-309
972-566-6300 • yourprettysmile.com
Biggest pet peeve People having pet peeves. I mean, can we just cut each other some slack?!
knowing sister is still up (to fend off the monsters, of course). 8:30PM Once the kids are asleep, I sit by the fire and listen to music with Rich for a while before getting in bed. The last thing we do before going to sleep is to make sure the doors are locked and the chains we have attached high on the front and back doors are latched—as my fellows special needs parents can appreciate, we sleep more peacefully knowing our little escape artists cannot wander off at night. t Diaries are penned by moms (and dads) in the Dallas-Fort Worth area. The authors volunteer to share a day of their choosing and are not paid or endorsed by Thrive. Send your diary to firstname.lastname@example.org. All submissions are subject to editing and may be cut for space.
Serving STAR Kids Members Throughout Texas!
Incontinence Urological Ads with © are © of Lauren Publications, Inc. 2017.
Photos courtesy of J. Randolph Lewis; ©iStock.com/Katrusya/nikamata
What she does when life gets stressful Bike! I love to ride my bike—for exercise, for fun, for competition—it’s my escape!
Enteral Nutrition Ostomy Wound Care Breast Pumps
To place an order, please call 800.407.8982 For helpful information, please visit: shieldhealthcare.com/grow/thrive thrive
ANXIETY AND AUTISM OFTEN GO HAND IN HAND, BUT GETTING SEPARATE DIAGNOSES—AND EFFECTIVE TREATMENT—IS STILL A CHALLENGE WORDS JULISSA TREVIÑO
ext to the fridge in Hilda Ruiz’s kitchen, a calendar reminds her 12-year-old-son Daniel of upcoming appointments—swimming lessons for him and his two siblings, twice-a-week therapist visits, a dermatologist appointment, a baby shower. The calendar helps keep her entire family in the know, but for Daniel, it helps manage anxiety. The Grand Prairie family has known since Daniel was a baby that he fell on the autism spectrum. (He was diagnosed at age 2.) They’ve since learned that changes in his daily routine lead to troubling, anxious behaviors. He repeatedly asks about scheduled events coming up, and sometimes he refuses to do things that aren’t on the calendar. “A therapist comes [to our home] once a week, but one time she had to change the day she came, and I forgot to make the change on the calendar,” Ruiz says. “He freaked out. He has to know [about changes] ahead of time, otherwise he gets very anxious.” Though he hasn’t been officially diagnosed with an anxiety disorder, Daniel, who falls on the low-functioning end of the autism spectrum, is one of a large percentage of children with autism who exhibit anxiety behaviors. Growing evidence suggests there’s a strong link between the two disorders. Anxiety is considered a comorbid disorder of autism, meaning patients often have the two simultaneously. In fact, research published in the journal Neuropsychology found that up to 80 percent of children with autism spectrum disorder (ASD) experience clinically significant anxiety,
particularly social phobia, generalized anxiety disorder (GAD), obsessivecompulsive disorder (OCD) and separation anxiety disorder (SAD). That’s a far larger percentage than in the general population, says Patricia Evans, a neurologist at the Center for Autism and Developmental Disabilities at Children’s Health in Dallas. “Children on the spectrum tend to exhibit much more anxiety [than neurotypical children], and it tends to show up in unusual ways,” she says. For example, a child with autism might be more likely to exhibit anxiety through repetitive movements, like flapping their hands or flicking their fingers. But while research and expert knowledge on the two disorders are gaining traction, managing—and even detecting—anxiety in kids on the autism spectrum remains a challenge. SYMPTOM, OR SOMETHING MORE?
Ruiz says anxiety has always been a part of her son Daniel’s autism. “Kids with autism, they look for comfort,” she says. “And to comfort themselves, they do repetitive behaviors. I think anxiety is part of the autism.” When he’s anxious, Daniel repeats words like “home,” a signal that he is uncomfortable and wants to go home but can’t explain what’s wrong. Because repetitive behavior is an inherent part of autism, experts admit it’s incredibly hard to differentiate between anxiety disorders and expected autistic behaviors. Behavioral analyst and licensed counselor Kimberlee Flatt does research on repetitive behaviors and works as the adult intervention C O N T I N U E D O N T H E N E X T PAG E
coordinator at the University of North Texas Kristin Farmer Autism Center. Flatt, who has a high-functioning 15-year-old with autism, explains that autism often looks like anxiety. “We see little kids all the time, they’ll pick up a train and instead of playing with the toy the way it’s designed to be played with, they’ll just play with the wheels or isolate one part in a restrictive or repetitive way,” she says. “In those instances, it’s not necessarily related to anxiety. It’s just a selfstimulatory way to play with a toy. “Other times we see obsessive rearranging of things or reordering things, and that’s also hard to tell because sometimes it’s just a preference or the way they choose to spend their downtime. It can be a fun hobby or a manifestation of anxiety,” she says. Flatt adds that a child’s verbal ability and genetics and whether their parents have anxiety traits can also increase the chances of exhibiting anxiety behaviors. Anxiety in the ASD population looks different from person to person, but it can manifest in a wide range of behaviors, including obsessive repetition, aggression, lack of patience, constant worry and even depression; and it can sometimes bring about physical symptoms, like headaches, tremors and muscle aches. Diagnosing these behaviors is further complicated by communication difficulties, says Fort Worth psychologist Nesli Chandler, who conducts assessments for learning disabilities, including autism and anxiety. “The way we diagnose anxiety is through self-reported measures; we get feedback about how the child is functioning,” she says. “But children with autism
THE MORE WE KNOW
often have verbal delays, so they can’t communicate that to us. I think that’s the biggest obstacle that we face as clinicians.” For that reason, it can go “unrecognized or misdiagnosed,” according to a 2009 study published in Research in Autism Spectrum Disorders. So how do parents and, most important, experts tell the difference? The diagnostic criteria for autism include restrictive or repetitive behaviors, Chandler says. “That can be things they do with their bodies, or if they do the same thing over and over again, and the restrictive part is if they become obsessed with something, like become hyperfocused on baseball,” she says. “A lot of that can overlap with anxiety, so it’s hard to tease out.” Flatt says she can usually spot anxiety in a child with autism if they become anxious or exhibit repetitive, obsessive behaviors at specific times or in specific places. Refusal and protest behaviors can also be early warning signs that anxiety is a factor. But “when [those behaviors are] constant or across all settings, it’s less likely to be indicative of anxiety,” and is probably just an autism behavior, she says.
Chandler says doctors look at diagnosis as a pathway to help patients. Is the anxiety so prevalent that it requires specific attention in addition to autism treatment? If so, that’s when a separate diagnosis of anxiety is needed. LATE BLOOMERS
Cameron Lorzadeh’s anxiety can get so bad that the 24-year-old acts out, throwing a tantrum or sometimes hitting himself. But his mother, Pam Lorzadeh, who lives in Frisco, says those problem behaviors didn’t get serious until Cameron was 19, the year his father (Lorzadeh’s husband) passed away. “There was a lot going on,” she explains. “His dad went through a lot of medical issues at the end that Cameron had to be exposed to. When his dad died, I was overwhelmed.” Both Flatt and Evans say that prominent anxiety doesn’t always manifest in a child’s early years and that it can show up in the child’s teen years or even early 20s, triggered by hormonal changes associated with puberty, stressful events or life changes. Those factors were at play in Cameron’s life—shortly after Cameron’s dad died, Lorzadeh’s family (her other son, 25-year-old Doran, has autism too) uprooted from Katy to Frisco, another life change.
“HE’LL GET FRUSTRATED AND ANXIOUS BECAUSE PEOPLE WANT HIM TO COMMUNICATE, BUT HE CAN’T.”
➽ TO FILL IN SOME OF THE GAPS IN AUTISM RESEARCH, including comorbidity, the Simons Foundation Autism Research Initiative has partnered with hospitals around the country (including Texas Children’s Hospital in Houston) to launch the nation’s largest ever survey of people with autism. The project, called SPARK , hopes to enable and facilitate new and expansive research on autism by increasing the number of people available to participate in studies. SPARK wants to collect genetic samples from 50,000 families that will allow researchers to study the impact of genetics on the disorder. Once they register, SPARK families will be able to receive invitations from researchers who are conducting studies. To learn more or join the project, visit sparkforautism.org.
It’s been trial and error to calm Cameron’s anxiety. A change in his routine can be devastating. “I interrupted his routine one day for lunch, and he had this huge meltdown,” Lorzadeh says. “He started picking at his skin around that time. That was probably four years ago.” (Dermatillomania, a disorder characterized by repetitive picking of one’s own skin, has close ties to both OCD, which is a form of anxiety, and autism.) Lorzadeh realized that in trying to help her son become less dependent on routine, she was just contibuting to his anxiety. “The more I started trying to change his routine to make him more flexible, the more anxious he would get,” she says. He has other anxiety behaviors too. When the family eats out, he wants to eat exactly eight chicken nuggets, for instance, and he acts out when he can’t. Now that he lives in a group home, he gets very anxious about when he’ll get to visit his mother, Lorzadeh says. A calendar helps him keep track of how many days are left until he gets to go home. The hardest part about Cameron’s anxiety? He’s on the lowfunctioning end of the spectrum, and he can’t communicate his anxieties. “He’ll get frustrated and anxious because people want him to communicate, but he can’t,” his mom says. This isn’t uncommon. In children or adolescents on the lowfunctioning end of the spectrum, “we can’t always figure out what the triggers are,” Flatt says. That can turn into a vicious cycle: A child’s comprehension and communication difficulties
can fuel even more anxiety and worry, Flatt says. That’s where experts can help. EASE THEIR WORRIED MINDS
Many children with autism use ABA, or applied behavior analysis, which can help improve social skills and generally ease autism behaviors, including anxious behaviors like self-injury. But Chandler says people with autism and anxiety might also benefit from CBT, or cognitive behavioral therapy. “CBT is not indicated for people with autism, but it does help anxiety,” Chandler says. However, because CBT relies on talking through issues, the therapy is only ideal for people on the spectrum with strong verbal abilities. Chandler says experts, even if they are not psychologists who use CBT, should be able to treat all symptoms of a child’s autism, including anxiety. And if you turn to a therapist who specializes in anxiety, they need to have autism experience too, Flatt says. “There are tons of counselors who treat anxiety across the board, but you definitely would have to find someone who has expertise in autism because there are differences in how you implement. [People on the spectrum] may need more visual support; they may not have the verbal skills.” While Ruiz’s son Daniel has never been diagnosed with anxiety, the family has worked with professionals who’ve offered treatment that seems to be working. Ruiz has learned how to help her son Daniel cope with and prevent anxiety after years of trial and error. “You have to tell him exactly what’s happening and put everything on a calendar,” she says. “Sometimes [when we’re out], we go from one place to another, and you expect them to be OK with changes. But for them, it’s not what they want. It’s very hard to cope with change.” Nonetheless, Ruiz says they’ve learned to manage her son’s anxiety triggers by keeping to a routine. On the other hand, sometimes it’s much harder to manage
the repetitive, obsessive behaviors that characterize anxiety. Right now, there’s no FDAapproved medication specifically designed to treat symptoms of autism. But anxiety medications like Abilify are often prescribed for people on the spectrum who also have anxiety behaviors. Pam Lorzadeh put Cameron on medication four years ago—first Depakote, a seizure medication that is used in the ASD population to help address impulsive behavior, aggression and problems with language and social interaction, and later duloxetine and Abilify. The results? Inconclusive. “I can’t tell you for sure if the medication is helping,” Lorzadeh says. But there may be a more effective medication out there. In a 2016 study in which Evans (the Children’s Health neurologist) participated, researchers found that buspirone, another anxiety medication, reduced anxiety in some children with ASD. Buspirone works by increasing serotonin activity in the brain. “Children who have autism typically do not have sufficient serotonin in their brains for the first 10 years of life,” Evans says. “We know that serotonin is an important neurotransmitter that, in reducing anxiety, prompts young children to learn new things, especially language and social skills.” The study looked at the impact of buspirone on autistic behaviors, as well as social competence, repetitive behaviors, language, sensory dysfunction and anxiety, in children ages 2 through 6 with ASD. However, experts, including Evans, say medication should be a last resort only if treatment programs don’t ease symptoms of anxiety and autism. Often, therapy is enough. And Flatt says early intervention is key to long-term success. “It’s easier to treat children than adults,” she says. “These aren’t traits that go away without treating them. There’s no less exposure.” Given that anxiety is one of the most common traits research-
FINDING SURE FOOTING ➽ If your child with autism is exhibiting anxiety behaviors that haven’t yet been addressed, she may or may not need a separate diagnosis of anxiety—but you do need to seek out help. Behavioral analyst and licensed counselor Kimberlee Flatt, who works as the adult intervention coordinator at the University of North Texas Kristin Farmer Autism Center, offers these steps for parents: Document everything. Write down potential triggers and behaviors you think are associated with anxiety, even if they don’t seem like a big deal. If your child throws up every time she has a test in school, for example, it could be a sign of anxiety. A list of behaviors can give you some insight into patterns that may signal a bigger problem. Help your child come up with a list of soothing activities, whether it’s listening to music, taking a walk or experiencing a specific smell. Write the list down (or use pictures or representative items if your child has limited communication abilities) for easy access. Develop a consistent routine. Develop a structured routine with visual support. Once you start to understand what triggers the anxiety, you can selectively deviate from the routine. Talk to the professionals. Make appointments with your child’s doctor and therapists to discuss the anxiety behaviors you’re seeing. Professionals should be aware of behavioral changes, and they’ll be able to track and address the behavior over a longer period of time. If the anxiety is impacting multiple areas of your child’s life on a frequent basis and the strategies you’ve implemented aren’t working, you may want to try for a separate diagnosis of anxiety, which can open the door to other forms of treatment, such as medication.
ers see in the ASD population, experts agree more research is needed on the connection between the two, including proven methods to diagnose and treat the comorbidity. But Flatt says there are a few things parents can do: First, try to identify the root problem. If your child exhibits anxiety when using a public bathroom, try to figure out why. If your teen has anxiety over driving, what is it about the experience of driving that fuels the worry? Second, implement a regular schedule with predictable hours for eating and sleeping and a system your child can rely on, like Ruiz’s calendar. Creating an environment that’s not overly stimulating can also go a long way, Evans adds. Another part is realizing that your child can’t manage anxiety or autism on their own or even thrive
just with one person’s help. “A big part of our job as parents is to teach them to build a support network,” Flatt says. “[Teach them] how to contact their doctors, reach out to people that aren’t just mom, talk to friends and counselors at school. You’re teaching them to use this support network because no one manages it on their own.” Lorzadeh says Cameron is doing much better these days. He recently moved from a group home in Fort Worth to a home in Little Elm, where his schedule is much more routine and where he’s given the opportunity to be more independent. “I don’t see him as anxious. I see him a little more relaxed and happy,” she says. “I hope the environmental change was good for him.” t january/february 2018
BEST EVER e Fre T N EVE
YOUR ROADMAP TO AN
Parish Episcopal School 4101 Sigma Rd.
Botanical Research Institute of Texas 1700 University Dr.
Saturday, February 24 10am–2pm
Sunday, February 25 12–3pm
Explore more at dfwchild.com
T R AV E L
WORDS ELIZABETH SMITH
things to do in
january & february
The Colorful Eric Carle
Dallas, 214/740-0051 dct.org/sensory
P L AY
Treat your kids to a rich performance of 75 larger-thanlife puppets in The Very Hungry Caterpillar Show, the Dallas Children’s Theater's newest all-ages show inspired by Eric Carle stories including The Artist Who Painted a Blue Horse and The Very Lonely Firefly. Reserve your seats online for the American Sign Language interpreted show on Jan. 28 (tickets from $17) and call for tickets for the sensoryfriendly show on Feb. 17 (only $5).
Dancing on Air
Mandy Harvey in Concert Snag your tickets for a concert by Mandy Harvey, an America’s Got Talent contender who lost her hearing at age 18. Harvey is now a motivational speaker and author of Sensing the Rhythm – Finding My Voice in a World Without Sound. Don’t miss this live show with Mandy and her interpreter on Saturday, Jan. 6. Tickets from $26.
The Superstar Treatment
Richardson, 972/744-4650 eisemanncenter.com
The big day is not till Saturday, March 10, but now is the time to sign up your child for the North Texas Angels Pageant, pageant for guys and
The Tim Tebow Foundation’s Night to Shine event, a prom night and party exclusively for people with special needs 14 and older, returns to churches nationwide on Friday, Feb. 9. Look online to find a participating church near you (about nine across North Texas) to request an invitation for your teen or young adult, or go online to refer your home church as a host. Activities vary by location. FREE
girls of all ages with special needs or lifethreatening illnesses. Miss Texas 2012 and others emcee the event at the Eisemann Center
Multiple locations, 904/380-8499 timtebowfoundation.org/ministries/night-to-shine
for Performing Arts,
Photos courtesy of Carol Rosegg; Mandy Harvey; North Texas Angels Pageant; Tim Tebow Foundation; Chisholm Challenge
and all contestants get
For more events tailored to you, check the Special Needs Friendly option on our online calendar at dfwchild.com/ calendar.
the star treatment of a
crown, sash, trophy and
Join friends and family in packing the seats inside the John Justin Arena where 220 local equestrians with disabilities compete for the coveted ribbons and belt buckles in the annual Chisholm Challenge on Jan. 8–10, a few days before the Fort Worth Stock Show and Rodeo. Opening ceremonies begin on Tuesday at 8:30am, and at 1pm attend a special presentation by Michael Richardson, a paraplegic, motivational speaker and owner of Broken R. Ranch in Hico, Texas. FREE Fort Worth, 817/877-2420; chisholmchallenge.com thrive
the option of beauty prep free of charge. Space is limited so register online by Feb. 1. Free to the public; donations accepted. Richardson, 870/314-3647 ntxangels.org
UNLEASH YOUR SUPER POWERS! 2018
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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 DallasFort Worth as we could find. 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 25 add & adhd 25 advocacy 25 asperger’s & autism 25 child care 25 cystic fibrosis 26 developmental disabilities 26 down syndrome 26 dyslexia 26 epilepsy 26 equestrian therapy 26 hearing impaired 26 mental illness 26 muscular dystrophy 26 obsessive compulsive 26 recreation 28 respite care 29 sibling classes 29 tourette’s syndrome
Photo courtesy of Rays of Light
29 vision impaired
ADD & ADHD
Attention Deficit Disorders Association (ADDA) Southern Region Mesquite, 972/467-9299; adda-sr.org. Designed to be a resource network to support individuals with ADHD and/or related conditions and to advocate for community resources. Support group meets every other month during the school year (the second Tuesday of the month in February, April, September and November) at the Mesquite ISD Professional Development Center. Children and Adults with Attention Deficit/Hyperactivity Disorder (CHADD) ntxchadd.com. Works to educate and empower others with information about ADD/ADHD by providing parents with tools and information to help their child reach his or her full potential. Farmers Branch support group meets the third Wednesday of each month from 6–7:30pm in the Farmers Branch Library Conference Room. Call 469/767-6866 for more information. Tarrant County support group meets the fourth Monday of each month from 7–9pm. Call 817/707-6264 for more information.
Disability Rights Texas Dallas, 214/630-0916; disabilityrightstx.org. Nonprofit organization that works on the state and community levels to protect and advocate for the legal rights of people with disabilities in Texas. The group provides legal services to people with many different kinds of disabilities. Family and Youth Involvement Initiative Statewide, 512/944-9972; texasfederationoffamilies.org. Works to provide family-to-family support in the community, serving the needs of children with mental, emotional and behavioral health challenges.
ASPERGER’S & AUTISM
Autism Speaks Nationwide, 888/2884762; autismspeaks.org. The nation’s largest autism science and advocacy
organization. Offers resources, support and advocacy for families in the autism community while increasing awareness of autism spectrum disorders and advancing research into causes and better treatments for autism spectrum disorders. Families for Effective Autism Treatment (FEAT-NT) Richland Hills, 817/919-2228; featnt.org. Provides resources, support, education and advocacy for families in the autism community. National Autism Association of North Texas Plano, 214/925-2722; naa-nt.org. Seeks to increase public awareness about daily issues to advocate for appropriate services and to provide the latest information about autism 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 information on Facebook.
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 on-site if necessary. Children accepted case by case. BrightStar Care Multiple locations, 866/618-7827; 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.
all-day programs for teens and young adults (ages 13–22) with special needs. Easter Seals North Texas Child Development Center Carrollton, 817/424-9797; easterseals.com/northtexas. Provides a preschool program for children with autism ages 18 months–6 years and typically developing children to learn alongside each other. 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. 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. The Kristine Project Plano, 469/2124254; thekristineproject.weebly.com. A private child care, preschool and respite service on the east side of Plano with 35 years of experience serving children with special and medical needs. Full-time, drop-in or respite care available. Email email@example.com. 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, 228/341-0403; bluecaboose4cf.org. Provides back-toCalab, Inc. school assistance, a Multiple locaChristmas toy drive tions, calabinc. and a community com. Provides parent network for quality individualthe families of ized child care children with cystic that encourages fibrosis. The adultsindependence in only support group individuals with meets on the second NIGHT LIGHTS / page 28 disabilities. Monday of each month (location varClubhouse ies; see Facebook page for details or for Special Needs, The Bedford, email firstname.lastname@example.org). 817/285-0885; theclubhouse.org. Cystic Fibrosis Foundation Dallas, After-school programs, school holiday 214/871-2222; Fort Worth, 817/249programs, summer programs and
directory 7744. cff.org. Works to cure and control cystic fibrosis and to improve the quality of life for those with the disease.
ticipate in hippotherapy, exhibition and drill teams, Special Olympics equestrian events, and shows like the Chisholm Challenge for Special Riders Horse Show.
Unbridled Horse Therapy Flower Mound, 817/319-7778; 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.
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.
Denton County MHMR Center Denton, 940/381-5000; dentonmhmr.org. Provides services to individuals with mental and behavioral health care needs. Easter Seals North Texas Fort Worth, 888/617-7171; easterseals.com/northtexas. Centers in Dallas, Carrollton, Fort Worth and Grapevine provide services including outpatient rehabilitation, personal assistance, autism programs and respite care for children and adults with disabilities and other special needs. Jewish Family Service Dallas, 972/437-9950; jfsdallas. org. Offers a support group for parents and provides extensive services for children with special needs and their parents and siblings, including assessment of abilities and needs, diagnostic testing, counseling, play therapy, social skills groups and school consultation. MHMR of Tarrant County Fort Worth, 817/5694300; mhmrtarrant.org. Provides services to individuals with behavioral health care needs, intellectual and developmental disabilities, and substance abuse disorders.
Down Syndrome Guild of Dallas Richardson, 214/2671374; 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 the Facebook page. International Dyslexia Association – Dallas Branch Dallas, 972/233-9107; dal.dyslexiaida.org. Nonprofit, scientific and educational organization dedicated to the study and treatment of dyslexia. The Dallas branch provides information and resources concerning learning differences to parents, educators, professionals and anyone who wants to be more informed about dyslexia. The group meets 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 Foundation Texas Addison, 214/420-2737;
AUTISM SPEAKS / The national science and advocacy organiza-
tion hosts annual walks in Dallas and Fort Worth to raise money for autism research (page 25).
eftx.org. Nonprofit organization that strives to improve the lives of children and adults with epilepsy.
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. Riders have the opportunity to participate in the Texas Special Olympics and in exhibitions, including the Chisholm Challenge for Special Riders Horse Show held in Fort Worth each January. Equest Dallas, 972/412-1099; equest.org. Works with riders to develop independent skills that carry over to their everyday lives. Riders are encouraged to set individual goals ranging from holding the reins for one full circuit of the arena to more complex challenges, such as qualifying for and competing in the international arena. Grace Lake Ministries, Inc. Anna, 972/837-4621; gracelakeministries.org. God-centered therapeutic riding program with the goal of developing wholeness in the lives of the people served. Riders include anyone in need of hope and healing, including children and adults with disabilities or social challenges. ManeGait Therapeutic Horsemanship McKinney, 469/742-9611; manegait.org. Provides a fun, enriching and supportive environment for riders to reach their potential. Offers group, semiprivate 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. New Hope Equine Assisted Therapy Argyle, 817/729-5315; newhopeequine.com. Provides therapeutic horseback riding services for people with a wide variety of disabilities. Program is designed to bring hope, healing and happiness to riders through encouraging the horse and human connection. Riding Unlimited Ponder, 940/479-2016; ridingunlimited.org. Provides small-group and individual lessons for ages 4 to adult. Students can par-
Victory Therapy Center Roanoke, 682/831-1323; victorytherapy.org. Cares for the physical, mental and emotional needs of children, adults, veterans, first responders and their families through the healing power of horses.
Dallas Hearing Foundation Dallas, 972/424-7711; dallashearingfoundation.org. Nonprofit foundation dedicated to giving the gifts of hearing and speech to children and adults with hearing loss through surgical treatment, hearing technologies, rehabilitation and educational support to those in financial need.
Mental Health America of Greater Dallas Dallas, 214/871-2420; mhadallas.org. Works to stop the stigma around mental illness and build awareness of mental health issues while providing resources from established providers in the community. Offers multiple support groups at varying times. National Alliance on Mental Illness (NAMI) Dallas, 214/341-7133; namidallas.org. Provides support and education to families and friends of people with serious mental illness.
FACES of North Texas parentprojectmd.org. Families 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. Visit the Facebook page.
OCD and Anxiety Support Group DFW Bedford, ocdsupportgroupdfw.wordpress.com. Support group for families and friends of individuals with OCD and other anxiety disorders. Meets on the second and fourth Thursday of each month (except on holidays) from 6:30–8pm at Texas Health Harris Methodist Hospital Hurst-Euless-Bedford. OCD Support Group Richardson, 214/906-1692. Professionally led support group serving the Dallas/ Richardson/Plano area for parents of children with OCD, adults with OCD, family members/friends of people with OCD and teens with OCD. Meetings are held the second Monday of each month (except December) from 7:45–9pm at the Methodist Richardson Medical Center – Bush/Renner Campus, second floor, Education Room B. Email email@example.com for more information.
ACEing Autism Dallas Richardson, 214/901-9010; aceingautism.org/locations/dallas-tx. Nonprofit organization that provides a weekly program to
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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 Richardson; email dallasfasd@ gmail.com for more information.
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.
Express Cheer Frisco, expresscheer.com. Offers a cheerleading team for children with special needs that meets on Monday evening from 5–6pm. 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 Sunday at 5pm. Jumpstreet Plano, 972/378-5867; gotjump. com/texas/plano. Hosts a semiprivate event on the first Saturday of the month for children with special needs and their siblings.
Aqua-Tots Swim School Multiple locations, aqua-tots.com. Offers the basic survival swim program and a beginning stroke development class for children with special needs.
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.
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.
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.
Bachman Recreation Center Dallas, 214/6706266; dallasparks.org/facilities. Provides an accessible facility for all individuals age 6 and older with disabilities.
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.
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 six to seven weeks; sports include basketball, baseball, soccer and field hockey. Camp Summit Paradise, 972/484-8900; campsummittx.org. Camp for children and adults with disabilities ages 6–99. Traditional camp activities are adapted to each individual, provided in 100 percent barrier-free facilities and implemented by trained, caring staff. Challenge Air for Kids & Friends Dallas, 214/351-3353; challengeair.com. Offers motivational and inspirational aviation experiences to children and youth with physical challenges. Crull Fitness Richardson, 972/497-9900; crullfitness.com. Personal and group training for children and adults with various physical and cognitive disabilities through the Champions Challenge program. 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.
Miracle League of Irving Irving, 972/9868898; irvingymca.org. Provides children with disabilities age 3 and up the opportunity to play baseball, regardless of their ability level. The spring season runs March–May, and the fall season runs September–November. RISE Adaptive Sports Irving, 469/762-5075; riseadaptivesports.org. Promotes independence for individuals with physical disabilities through sports, recreation and other outdoor events and programs. Soaring Eagle Center DeSoto, 972/223-1873; soaringeaglecenter.org. Serves young adults with developmental disabilities and their families through Special Olympics, social activities, 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 Abilities of North Texas Lewisville, 972/317-1515; specialabilities.net. Supports adults with disabilities through programs and events, including a health and fitness program, creative arts program, and opportunities to visit local attractions and sporting events. 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, 512/8359873; sotx.org. Provides year-round sports training and athletic competition in a variety of sports for children and adults with intellectual disabilities. Special Strong Dallas-Fort Worth area, 972/8368463; specialstrong.com. Specialized health and
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teach children (5–18 years) and young adults (19–30 years) on the autism spectrum the game of tennis while improving their gross motor skills, hand-eye coordination and social skills. Sessions are held in the fall (mid September–mid November), spring (February–early April), and summer (June–mid July).
4100 Alpha Rd., Ste. 1150 Dallas, TX 75244 214-257-8883 firstname.lastname@example.org
services SPECIAL ADVERTISING SECTION
a resourceful guide for your special needs Barrier-Free Outdoor Experiences, Since 1947 Camp Summit is a one-of-a-kind camp for children and adults with disabilities. Campers enjoy activities like horseback riding, archery, swimming, ropes, photography, arts & crafts and more. Weeklong overnight sessions in spring, summer and fall, for ages 6–99. Financial assistance available. Registration opens January 16. Camp Summit 972-484-8900 campsummittx.org
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. We are now accepting applications for the 2018–2019 school year. Please contact Cindy Reynolds at email@example.com.
Starcatchers multiple locations, 972/422-2575; starcatchers.org. Provides youth and adults with opportunities to shine through drama, music, dance and visual art. Opportunities range from large theater productions to intimate art classes and further the development of social, communication, motor and cognitive skills. 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 the 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. 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 (all ages) and siblings (ages infant to 12 years) on the third Friday of the month throughout the year (excluding June, July and December). Registration is on a firstcome, first-served basis.
Speech Therapy In-Clinic and In-Home!
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.
Puzzle Piece Kids Pediatric Therapies, LLC 502 W. Kearney St., Ste. 600, Mesquite, TX 75149 972-288-KIDS (5437) • fax 1-800-921-7173 puzzlepiecekids.com
Creative and integrated approaches to speech and feeding therapy We believe in a multi-sensory holistic approach to therapy to meet individual needs by embracing the PROMPT philosophy. Reshaping speech movements and phrases liberates our patients, who become more effective communicators in motivating play and social interaction routines. WalkEZ TalkEZ Rebecca L. Dana, MS, CCC/SLP, PC, SIPT-C 7002 Lebanon, Suite 102, Frisco, TX 75034 469-408-4634 • F: 972-618-1051 firstname.lastname@example.org • www.walkeztalkez.com To advertise in the Services section, call 972-447-9188 or email email@example.com
fitness services, including private training and boot camps for children and adults with special needs.
Notre Dame School of Dallas 2018 Allen St., Dallas, TX 75204 214-720-3911 notredameschool.org
Puzzle Piece Kids Pediatric Therapies, LLC’s mission is to enhance children’s lives by providing therapy that is unique to their communication goals so they may successfully participate within their communities. We offer articulation, language, voice, fluency and feeding therapy to children ages 0–20.
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. Friday Night Fun and Night Vision at Lake Pointe Church Rockwall, 469/698-2310; lpkids.com/rockwall. Friday Night Fun is a 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. Night Vision is for older students with special needs one Friday a month from 7–9pm. Nonchurch members accepted when space is available. Email firstname.lastname@example.org to register. SOAR, the special needs ministry, offers other programs for children and adults with special needs. 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 during services at 9:30 and 10:50am. 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 and teens ages 11–15 with special needs and their siblings meets at Liberty Recreation Center from 5:45–8:45pm on the second Friday of each month (except June and July). 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 from 5:30–8:30pm. 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
Having Spina Bifida doesn’t stop us from just being kids. We Are Living #beyondlimits!
M.E.N.D. 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 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.
Mommies Enduring Neonatal Death
Night OWLS Dallas, 214/523-2284; hpumc. org/night-owls. Respite program for children ages 3 months–13 years with identified special needs and their siblings from 6–10pm on the first and third Friday night of each month at Highland Park United Methodist Church and the second Friday night of each month at Munger Place Church.
We are a Christian, non-profit organization that reaches out to families who have suffered the loss of a baby through miscarriage, stillbirth or early infant death. We publish free bi-monthly newsletters, hold two commemorative ceremonies each year and host support groups in the Dallas-Fort Worth area.
Parents’ Night Out Allen, 972/727-8241; fbcallen.org. Respite program with music, games, movies and snacks for grade schoolage children and their siblings one night a month during the school year at First Baptist Church Allen. Respite Care at Irving Bible Church Irving, 972/560-4613; irvingbible.org. Respite night one Saturday a month for children, teens and adults with special needs from 5:30–8pm. Reservations required.
Find out more about Camp TLC and the other programs we offer for persons with spina bifida at www.spinabifidant.org
Support, Programs, Advocacy & Awareness Since 1973
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 and a group for ages 8–12 meets every other month; there are occasional field trips and camps for ages 13–20.
972-238-8755 • email@example.com www.spinabifidant.org ©
Which dentist is right for my child?
FEAT-North Texas Sibshops Richland Hills, 817/919-2228; featnt.org. Sibshop held annually 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. HEROES Sibshops Richardson, 817/925-9434; heroesdfw.org. Program for the siblings of children with disabilities to participate in fun and exciting activities in a safe environment. Workshops take place one Saturday a month (excluding June, July and August).
We have an answer for that.
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.
Get your most-trusted special needs resource delivered to your inbox. Sign up at dfwchild.com.
American Foundation for the Blind Dallas, 214/352-7222; afb.org. Provides information and referrals to blind and visually impaired persons and their families. Dallas Lighthouse for the Blind Dallas, 214/821-2375; dallaslighthouse.org. Nonprofit organization that focuses on improving and enhancing the lives and opportunities for individuals with visual impairments in North Texas.
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life goes on
ately, and around the holidays especially, our family has felt isolated and alone. As a family living with disabilities, we are already part of a segregated group, yet as Nick’s health continues to deteriorate we feel like we are moving further and further away from people, even other families like us. That is what stings the most. There are many support groups out there—autism groups, Down syndrome groups and many more—but we do not fit into any of them. We need a “cluster of random issues” support group. We used to go meet friends out of the house. We would plan for events and actually get to attend them. But as the years have progressed, and we’ve gone from having one child with a disability to having a second, and now the excessive hospital stays and medical support, time spent with friends and acquaintances has dwindled significantly. There are fewer invitations to go out with friends, and our lives are consumed with the care of the boys and just making life work. This isn’t what we imagined, is it? For families like ours, everything we do must work around the care of our fragile children. If the planning doesn’t align
when the calls stop WORDS JOSH SCHILLING
with all their needs, then we are stuck. We are stuck on the inside looking out. Every time we are back in the hospital, the calls and visits diminish, and the lonelier it becomes. Why do the calls and visits stop? Are people uncomfortable with the situation? Do they not know what to say? Are they fearful that they will get stuck in another conversation about medical equipment, nursing and procedures? (Believe me, we do want to talk about our children, but we also want to have adult conversations.) Times like these are when we need friends and families the most. Yes, friends can and have said the wrong thing at times, but it’s not their fault, and they
have not even realized they said something that hurt. Just their presence and the bond of friendship helps the soul. Nick still has a few friends that visit him weekly. They’ve graduated college now, but they love Nick so much that they continue to visit, and we pay them out of pocket to spend time with him. They love Nick for sure and would do anything for him. Sometimes, I feel a part of it is for me as well. I have known them for a while, and when they come over, it’s also my time to visit with the guys and just talk about life. But as they grow up and attain steady jobs, their visits become less. I don’t fault them. Who would want to spend their little free time at our house help-
For families like ours, everything we do must work around the care of our fragile children.
ing with daily living skills and social skills? I cherish the few days we have together, because afterward, it is just us again, alone in the house with nurses, equipment and procedures. My inclination has always been to stay strong, act confidently and not show any weaknesses. It is how I am made and how I feel I can best support my family. But I have learned that every now and then it is OK to show your vulnerability and ask for help. After all, if you do not take care of yourself, then you are no good to the people who require your help as well. Nick has been given a shortened timeline here on this earth. Being able to spend each day with him is a blessing. There are times, however, that my wife and I want to plan a family vacation, but it is just not possible for us. So for now, we wait. We wait and plan vacations for when Nick is no longer with us because it is not a matter of if, but of when. Sure, it is lonely, but we are thankful for the abundance of blessings we do have. It is a unique life, one we were not prepared for, but our family is strong. And at the end of the day, we have each other to fall back on. The loneliness spikes at times, but we work through it each day it sneaks in.
Published on Dec 19, 2017