PCWSN 2019 Issue 3 STL

St. Louis / Volume 1 : Issue 3 / PCWSN.com

My Miracle Child Life with Robbie

EW, THAT’S GROSS Understanding and Dealing with Food Sensory Issues

THE LITTLE THINGS

A Conversation with Jenettie Kauten

DRIVING WITH SPECIAL NEEDS When and How to Best Prepare Your Child

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FEATURES Sponsored Feature

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Ew, That’s Gross!

10

“My Miracle Child”

14

“The Little Things”

Understanding and Dealing with Food Sensory Issues

By Marilyn Tanner-Blasiar, RD

24

Life with Robbie

By Chance Copeland

A Conversation with Jenettie Kauten

By Chance Copeland

Screen Time

20 Driving with Special Needs 24

By Emily Goodwin MD, FAAP

26

By Anette Maggard Lewer, MOT, OTR, CDRS

DEPARTMENTS

18 Treating spina bifida at Shriners Healthy Living

Hospitals for Children® – St. Louis By the Pediatric Orthopaedic Specialists at Shriners Hospitals for Children

22 Being a Super Parent Independent Living

in the Moment

By Kari Wiss

26 ABA Therapy: Center-Based Practical Matters

vs. Home-Based

IN EVERY ISSUE

By Angela Nap

St. Louis /

On the Cover: Robbie Small is Kay’s “miracle child.”

Volume 1 :

My Miracle Child Life wit

Issue 3 / PCW

SN.com

EW, THAT ’S GROSS

Understan ding Dealing with and Food Sensory Issue s

h Robbie

THE LITTLE THINGS

A Conversa tion with Jenettie Kaut en

4 Publisher’s Letter 27 Resource Guide

Exactly Where I Need To Be. Introducing our new and growing comprehensive resources guide for St. Louis! Your guide to health & service providers for adults and pediatrics with disabilities.

DRIVING WI SPECIAL NE TH EDS When and STL’s Pedia

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How to Prepare Your Best Child

tric Healt

h and Servi

ces Resou rce Guide

Volume 1: Issue 3 / Parenting Children with Special Needs

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PUBLISHER’S

Letter

Are You Misunderstood?

H

ow often do you share the story of the life you were given - sharing all the good, the bad and the ugly? For some of you, the answer might be never. As for me, I’ll share with anyone that listens! I’m blessed with the ability to gab, and I have an uncontrollable desire to share because I feel my story is pretty amazing.

My life can be summed up mostly in one word: “misunderstood.” Yet I don’t want to be misunderstood, so I suppose that is why I talk, write and share so much. For those who want to know me, I make myself readily available.

When you look at someone, how do you see them? Do you talk to them, stare at them, or ignore them entirely? Do you smile, or merely make eye contact and move on?

We are frequently the parents others are looking at. We may feel as though other parents are ignoring us, staring, or talking to us simply because they are curious or nosy. Removing ourselves from the comfort of our own skin to allow others to understand us can feel like an impossible feat - and it can be difficult to comprehend that feeling “misunderstood” is regularly the result of the way we feel we have been perceived, not the result of who we actually are or the stories we tell.

At times, we may find ourselves in a race to feel understood - a race which feels impossible to win. While somewhat typical, chasing the fierce desire to be understood or “feel normal” is a difficult pursuit. We can be lost in the shuffle of support groups, social media groups, and any number of activities that make our crazy lives feel normal. We can disguise our challenges and struggles in an expansive repertoire of uplifting social media posts or filtered photos that make us appear permanently happy to the outside world, all the while never admitting to our sadness, fear, or disappointment.

Here is a truth I know: as parents, we juggle a lot in our daily lives. As parents of adults or children with special needs, this juggling grows exponentially. There are days when I can’t find my coffee mug, my keys, or my mind. I know I’m not alone in this! You may 4

Parenting Children with Special Needs / Volume 1: Issue 3

reach mid-afternoon and feel tapped out, only to look up and realize it’s barely 10 AM and you have no time for a nap. Like me, you may have a long list of responsibilities: that early morning doctor’s appointment, that field trip money for your youngest which is already two days late, or distracting the kid in the backseat who is hungry because he can’t eat anything until his labs and ultrasound are complete.

For me, there are entire days which consist of getting to the doctor’s appointments and then getting through them, receiving new diagnoses and then spending the rest of the day processing. Sometimes, it may seem easier to wear those filters which cover up our emotions as we process - to plaster on a smile if only to say “I am okay.”

If there is anything I have learned along this journey, it is this: it is okay, at times, for people to misunderstand you. It is okay to display your emotions without filters, to be courageous in your fear, and to be honest about what you feel.

In my life, I have been misunderstood - but I am okay. I am not alone, even if there are times when I feel alone. I get to wake up to the sun each morning, a God that never changes, and an understanding that I will be okay regardless of trial or circumstance, because He’s got this.

My faith in Him is incommensurable - unable to be explained or measured - and this enables me to live with faith over fear, without the filters that often consume us.

So, let me ask you this: do you fear the misunderstood lives we often live?

To me, there are two choices: to fear or have faith. It takes faith to be sure of who we are, be confident in our strengths, and be assured that our conscious decisions to be faithful allow us to conquer our challenges. By exercising this faith, I have been able to set aside my worry about being misunderstood and live without filters. I have owned my struggles, allowed others to see who I truly am, and I have been truly understood - perhaps for the first time.

Will you join me?

Until next time, Stephanie Myers

PCWSN.com

No one knows bones – and kids – like Shriners Hospitals for Children.

Aniyla, age 10 Patient since 2010

Shriners Hospitals for Children — St. Louis has been bringing Love to the Rescue® to children with orthopaedic conditions and bone diseases for more than 90 years, regardless of their families’ ability to pay.

To refer a patient, please call 800-850-2960 shrinershospitalsforchildren.org/st-louis PCWSN.com

Volume 1: Issue 3 / Parenting Children with Special Needs

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Caring for Families Raising Children with Special Needs Parenting Children with Special Needs Inc. (PCWSN Charity), is a MO 501(c)(3) organization dedicated to enhancing the quality of life of local families who have a child with challenges that are associated with a medical diagnosis.We empower these special families by providing them funding, educational resources, community awareness, and support.

Among the programs funded by PCWSN Charity is the Santa’s Miracles Program, which brings gifts and good cheer to chronically or terminally ill children and their families. PCWSN Charity also hosts community events liike our Sweetheart Gala and our WineRaiser. A big part of PCWSN is that our Charity provides individual grants for technology assistance, mobility or medical equipment needs, such as sensory room makeovers, wheelchair accessible ramps, and emergency travel. All programs benefit local Kansas City families in need who have a child with special needs.

Volume 1 • Issue 3 Publisher Stephanie Myers Stephanie@PCWSN.com Editor Chance Copeland pcwsn.editor@gmail.com Art Director Stephanie Biddle Design@pcwsn.com Business Development Devin Morris Devin@PCWSN.com Advertising Darcie Jones Darcie@PCWSN.com Contact us at 30905 E. Stony Point School Road Grain Valley, MO 64029 816-217-7486 ISSN 2168-1449 Website PCWSN.com

Make a Donation or Become a Corporate Sponsor Contact Stephanie Myers 816-217-7486 or pcwsnkc@gmail.com

Social Media Facebook.com/pcwsn Twitter.com: @PCWSpecialneeds Sign up for our e-newsletter to stay current on upcoming events.

Email info@PCWSN.com or sign up on our Facebook page.

Endorsed by

Visit PCWSN’s Facebook Page & Get Involved!

Share advice, heartaches, humor, photos of your miracle kid(s) and more on the Parenting Children with Special Needs Facebook page.

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DID YOU KNOW? A survey conducted by Childwise in 2015 indicated that children between the ages of five to 16 spend an average of 6.5 hours a day of screen time.

Parenting Children with Special Needs / Volume 1: Issue 3

Parenting Children With Special Needs magazine is published by Parenting For Special Needs Children LLC. Information contained within this publication should not be considered a substitute for consultation with a licensed physician. Parenting Children With Special Needs, its affiliates, employees, contractors, contributors, writers, editors, designers, photographers, and its Editorial Board of Advisors [“Publisher”] do not accept responsibility for inaccuracies, errors or omissions or for claims made by Advertisers. The Resource Guide is not a comprehensive listing.

Inclusion is at the discretion of the Publisher. Publisher expressly assumes no liability for any damages whatsoever that may be suffered by a patient, purchaser, or user of any products or services advertised or mentioned editorially herein. You expressly agree that your use of information in Parenting Children With Special Needs is at the sole risk of the consumer. Photographs of any model in Parenting Children With Special Needs in no way suggests or implies that the subject had undergone any procedure or used the products showcased. Every effort has been made to ensure accuracy in the information provided. Photography and content in the publication remain the express property of Parenting Children With Special Needs. The unauthorized reproduction or distribution of this copyrighted work is illegal. Parties reproducing the publication in whole, or in part, are subject to prosecution under applicable federal, state and local criminal copyright infringement legislation. The aforesaid unauthorized reproduction, or repurposing of materials, includes any from replication of the publication, either in its entirety or portion thereof, without the written consent of Parenting for Special Needs Children LLC.

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St. Louis Public Library provides parents and children with support through: • Storytimes: Stories, Songs and More • Sensory Play Activities • Books • Toys • Resources • And More!

Visit our website at slpl.org for more information.

SPECIAL NEEDS, SPECIAL PLAN. Northwestern Mutual understands the importance of having the right financial plan in place for loved ones with special needs. With our guidance, you’ll be empowered to make informed decisions and help provide the highest possible quality of life for those who depend on you.

Kacy Seitz CLTC Financial Advisor (785) 224-9437 kacyseitz.nm.com 05-4018-1 © 2017 Northwestern Mutual is the marketing name for The Northwestern Mutual Life Insurance Company (NM), Milwaukee, WI (life and disability insurance, annuities, and life insurance with long-term care benefits) and its subsidiaries. Northwestern Mutual Investment Services, LLC (NMIS) (securities), a subsidiary of NM, brokerdealer, registered investment adviser, and member of FINRA and SIPC. Kacy Brooke Seitz, Insurance Agent(s) of NM. Kacy Brooke Seitz, Registered Representative(s) of NMIS. Kacy Brooke Seitz, Representative(s) of Northwestern Mutual Wealth Management Company®, (NMWMC) Milwaukee, WI, (fiduciary and fee-based planning) subsidiary of NM and a federal savings bank.

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Volume 1: Issue 3 / Parenting Children with Special Needs

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SPONSORED

Feature

By Marilyn Tanner-Blasiar, RD

W

hat in your surroundings triggers some of your most treasured memories? The sound of blades scraping the ice at the rink? The smell of coffee in your parents’ kitchen?

Maybe the taste of certain foods you only encountered on special occasions. If your child struggles with sensory processing issues, those same sights, smells and tastes can present a challenge — for them and for you.

Nowhere is that more apparent than at the dinner table.

We experience food with all our senses. As a Washington University dietitian with St. Louis Children’s Hospital, I see it all the time — if one of the senses is off, it can affect a child’s entire mealtime experience.

Ew, That’s Gross!

Understanding and Dealing with Food Sensory Issues

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Parenting Children with Special Needs / Volume 1: Issue 3

PCWSN.com

Smell

Before food makes it to the tongue, the smell hits the nose. And if a child does not like the smell, they likely are not going to move that food from fork to mouth.

Touch

Do the tags in your child’s shirt bother him? If so, think about orange juice. Will he drink orange juice with pulp, or does it need to be pulp-free? I have found that children who cannot stand tags or clothes that itch tend to hate pulp in their orange juice. Drinking orange juice is as tactile an experience as wearing clothes, and if your child is sensitive to clothing choices, then he’s probably going to prefer smoother textures in food.

Hear

We don’t often think about the sound of food being an issue, but consider raw carrots. That crunch, which is so much louder when we hear ourselves eating, can turn a child off.

See

Despite how delicious you know your grandmother’s noodle casserole is, it might not look as appetizing to a child who hasn’t seen it before.

Taste

5. Beware the sauce: When you’re eating at someone else’s house, they will make food a little differently. New sauces often rub kids with sensory issues the wrong way. Ask the host to set aside a small portion of plain food.

6. Encourage your child to play with his food: No, I’m not suggesting you applaud your child for throwing food on the floor, but DO allow him to explore what he’s about to eat. Part of the battle for a child with sensory issues is comfort. Let him get comfortable with the food you want him to put in his mouth.

If you are experiencing “food fights” in your home day after day, ask for guidance. Talk to your pediatrician about a feeding evaluation.

The most obvious sense at play when we eat is taste. Each person experiences food a bit differently, and that sense evolves over time. For example, young children often dislike the taste of vegetables because they find them bitter. Those same children may like vegetables when they get older and their taste buds have matured.

Managing all five senses in one meal can seem overwhelming, especially when parents of special needs children are already managing so much. To make life at the dinner table easier for your family, consider my top 10 tips: 1. Offer foods in different forms: Perplexed because your child just rejected Grandma’s mashed potatoes, but she loves mashed potatoes at home? What’s different? Could it be that Grandma’s aren’t as smooth as yours? Mash them up a little more and offer them again.

Your child doesn’t like the green beans because he doesn’t recognize the fried onions on top? Pick your battles. Offer plain green beans.

2. Look for patterns: I once worked with a parent whose child needed more potassium but wouldn’t eat bananas. The dad thought his son was being picky, but when I asked the child why he didn’t like bananas, he said, “Because they make my throat itchy.”

Sometimes children experience allergic reactions to foods, but don’t know how to describe them.

3. Plan ahead: When you’re making a meal you know your child will like, double the recipe and freeze the extra for a day you’ve spent running errands. Take your own food to parties where you know your child will struggle with the host’s offerings.

PCWSN.com

4. Check the temperature: If food is too hot or too cold, a child will reject it.

7. Slow Down: Turn off the TV. Find a mother’s room or quiet space in the mall. Make a point to sit down with your child for meals. All the commotion might just be too distracting for your child to focus on her food.

8. Don’t force food: If you ask me, the Clean Plate Club should have been shuddered long ago. Present your child with a meal. Let him explore his food.

Encourage him to try new things. But if he rejects it, lean in. The more of an issue you make of it, the more of an issue it will become.

9. Allow your child not to like certain foods: Do you have foods you just don’t like? So will your child. He or she may never grow out of those preferences, and that’s okay.

10. Advocate for your child: When we’re guests in others’ homes, it’s only natural that we want to please the host and limit potential scenes. But don’t sacrifice your child’s meal in the interest of being polite. Talk to Grandma and Grandpa about the issues you’re facing and ask for their help enforcing the standards you have developed in your home. You might be surprised at how much help — and insight — they can provide.

Generally speaking, children struggle with food sensory issues.

Special needs children, specifically, struggle with them at a higher rate. If you are experiencing “food fights” in your home day after day, ask for guidance. Talk to your pediatrician about a feeding evaluation. At St. Louis Children’s Hospital, a multidisciplinary team consisting of a speech-language pathologist and an occupational therapist performs feeding evaluations, which can include a consultation or referral to a dietitian, psychologist, lactation consultant, social worker, or other specialist. For more information or to schedule an appointment, call 1.800.678.5437.

Marilyn Tanner-Blasiar, RD, is a Washington University registered dietitian at St. Louis Children’s Hospital. She is also a mother to two young sons.

Volume 1: Issue 3 / Parenting Children with Special Needs

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PCWSN.com

“My

MIRACLE Child”

Life with Robbie

By Chance Copeland

W

hen Robbie Small was born, the prognosis was grim. Delivered at 29 weeks as a result of a placental abruption, he was diagnosed with Spastic Triplegia Cerebral Palsy and suffered a severe brain bleed which necessitated the use of a cerebral shunt. Even with emergency medical intervention, doctors did not anticipate his survival. They said he would never eat on his own, and he was not likely to ever know and recognize his parents.

“Basically, [they said] he would be in a vegetative state,” mom Kay Small said.

Despite fearing the worst, the Smalls refused to give up on their son. Since Robbie has a visual impairment, he qualified to attend the Delta Gamma Center for Children with Visual Impairments in St. Louis. She enrolled him there and watched him defy the odds, day by day and little by little.

“They were the key to making him as good as he is,” Small said. “I will forever be grateful to [them].”

Robbie’s upward trajectory continued as he aged. Although his cerebral palsy meant that he was wheelchair bound, his left arm and hand were unaffected, and he took his challenges in stride during his time in school.

“His biggest struggle [in school] was using the bathroom,” Small said. With the help of his male aid and his cell phone in case of emergency, he achieved independence – which marked one of many successes in his 23 years.

“Robbie is my miracle child,” Small said.

Since his time in the hospital when they were unsure of whether Robbie would survive, he has achieved things previously thought unimaginable.

“Robbie loves to bowl. He participates in Special Olympics and has been to state three times,” Small said. “He has also been in Children’s Tri-My-Best triathlon and [was] interviewed on Channel 4 by Laura Hettiger.”

In addition, Robbie found solace at Camp Independence, a camp run through St. Louis Children’s Hospital for children with Cerebral Palsy.

“The best years of his life [were] going to Camp Independence,” Small said. “He was their first camper and never missed.” Robbie aged out of Camp Independence, but hopes to return one day as a volunteer.

Although Robbie has flourished in an amazing way, caring for an adult with special needs presents its own unique challenges. “[Robbie] is as tall as me and weighs more,” Small said.

Since her husband is physically disabled from a motorcycle accident, she is responsible for the physical demands of Robbie’s care.

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“I am no spring chicken, and it scares me to think what will happen when I am gone,” Small said. “This is every special needs parent’s worry, I’m sure.”

daughter and son-in-law frequently take Robbie out and spend time with him, and their active role in their church community has helped them through the hardships over the years.

For now, they focus on what they can control: helping Robbie live life to the fullest and ensuring his environment is what it needs to be for him to thrive. To make daily life easier, they built a house when Robbie was three that is accessible, and they have a van with a lift for when he needs to be transported somewhere.

“Faith Church in Columbia [has] embraced him and our family,” Small said. “Our faith has helped us through all the nightmares.”

Robbie also participates in a program called TEAMWORK that helps special needs children transition from high school into the outside world. There, he can socialize with peers and learn the skills he needs to prosper in adulthood. Like any other young adult, he has dreams for the future and aspires to be a motivational speaker.

“Just because he is in a wheelchair doesn’t mean he is not capable,” Small said. “He is a regular guy that wants to marry someday and have children.”

“He wants to be like a normal guy,” Small said. “Robbie’s spirit shines on us and everyone who comes in contact with him.”

His physical struggles mean little in the way of mental limitations.

At home, he is fondly referred to as the life of the party, has an incredible sense of humor, and never lets anyone forget about anything.

“We laugh a lot,” Small said.

The Smalls also have an excellent support system to make their daily life easier: their daughter, her husband, and the church. Their

Robbie is 23 now – and more than anything, he wants the world to know that he is capable.

Although caring for an adult with special needs can be physically and mentally tough, Small offered words of encouragement to those who may be facing similar circumstances.

“Explore every option available to your child. Don’t listen to naysayer doctors – find a new doctor. Connect on social media with other parents. Never give up [and] keep the faith,” Small said.

“It is a struggle to raise a special needs child for sure, but so very rewarding.”

At 29 weeks, no one would have guessed Robbie would become everything he is – and now, each day 23 years later, he proves that a prognosis is just that – merely a prognosis.

Call Today!

Don’t miss your chance to reach or support our community of children & families with special needs.

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“The Little Things” A Conversation with Jenettie Kauten

By Chance Copeland

T

here are things which one notices about a person immediately upon meeting them. In many cases, they are trivial: the way one wears his or her hair, the shoes on one’s feet, or any number of inconsequential observations. Yet when I met Jenettie Kauten in a crowded coffee shop three days after Christmas, my first observation wasn’t of her appearance – it was of her poise.

Calm and intentional, she pushed her daughter MacKenna’s manual wheelchair with ease through an unyielding crowd as if she’d done it at least a thousand times before, MacKenna’s dad trailing closely behind her. She moved with purpose, and when she found me in the back of the shop at the only handicap accessible table, she navigated MacKenna to a halt beside me, extended her hand, and sat down to tell her story – a story that begins thirteen years ago in Branson.

“I was 18 when I got pregnant, and 19 when I had [MacKenna],” Kauten said.

As far as she knew, it was a relatively normal pregnancy and a typical delivery. She’d given birth to a beautiful baby girl and did not anticipate the challenges she would face. When MacKenna was born, Kauten recalled that she was almost immediately taken for evaluation by doctors and medical professionals.

“I got to kiss her on the forehead and out the door she went. By that time, she went from looking like a newborn to her head swelling up,” Kauten remembered. “She didn’t look like she was living, not really.”

Almost immediately, the diagnosis arrived.

Doctors said if she lived more than 24 hours, she would have cerebral palsy. She was transported to the ICU and placed on a ventilator, but the odds of her survival were relatively small.

“She spent two weeks in the ICU,” Kauten said.

“She didn’t open her eyes for several days, and when she did look up, it was like she was looking through you.”

Thirteen years later, as Kauten sat across from me sipping on a hot coffee, no one would have ever guessed that she’d been in a position of uncertainty. From time to time during our conversation, she adjusted MacKenna in her seat, leaned over to offer her affection, or briefly paused just to ensure she was alright. Each time she interacted with her daughter, she did so with the confidence of a full-time caregiver. She knew what to do, when to do it, and how to do it correctly.

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Yet when MacKenna was first born, Kauten was devastated.

house and walking through the store is what keeps me going.”

“[I] spent the first two years doing a lot of bawling,” Kauten said.

At home, she hangs paper leaves from the ceiling in the fall and puts up her “winter wonderland” as soon as December comes around. They are little things, but they distract Kauten from the daily struggles of single parenthood.

It was hard for her to adjust to the challenge of being a young parent with a medically complex child, and she was uncertain of the path that lay before her and how she would make things work.

“Once I adapted to it, all that kind of calmed down,” Kauten said.

However, adapting to the new life Kauten had taking care of her daughter created difficulties in her relationship with MacKenna’s dad that were only heightened by the circumstances of their lives. “[We] didn’t realize what we were getting into,” Kauten said. In time, the stress of navigating a romantic relationship and the care of their child resulted in their separation and left Kauten as a single parent.

MacKenna’s dad works out of town and is gone for many months of the year. When he is in town, he does what he can, but when he is gone, Kauten is personally and single-handedly responsible for the care and well-being of her daughter. She manages breathing treatments, vest treatments, stretching, and a barrage of other home therapies. At least once or twice a week, MacKenna has various therapies or doctor’s visits outside the home. Currently, they are working on getting into Ability KC for more intensive treatment. If it can be named, Kauten has probably done it (or will try).

“Every day is different,” Kauten said. “Some days we’re home doing therapies all day.

Other days, we’re on the road all day getting household stuff taken care of.”

“I keep going for her,” Kauten said, and MacKenna’s improvement over the years is an indicator of this success. “[There have been] a lot of [therapies], a lot of appointments, a lot of doctors saying ‘she won’t do this, she won’t see, she won’t comprehend what you’re saying.’ [But] she tracks everything. She loves lights. It’s amazing to see the difference.”

While Kauten revels in each of her daughter’s accomplishments, she maintained that the most rewarding part of having MacKenna is something as simple as seeing a smile on her face and knowing that MacKenna is truly hers. “[It’s rewarding] to know that you created something that is imperfect, but perfectly perfect,” Kauten said. “She’s opened up my eyes to a whole world of things I didn’t realize. Even just talking, and the moving, and the normal stuff that we pick up on a daily basis takes her twice as long to learn and twice as quickly to forget…you can’t take any of it for granted.”

Despite being overwhelmed at times, Kauten takes every day and each new challenge in stride. When the specialists near her home in Branson retired, she moved to the Kansas City area in search of better opportunities for herself and her daughter.

“We just followed at the time where we felt we had to go,” Kauten said. “I moved a lot when I was growing up, and I didn’t want that for [MacKenna]. [But] we had outgrown our space and everything in the area, and we came up here hoping for bigger and better things.”

Kauten has lived the past thirteen years with this mindset. MacKenna requires constant and around-theclock care, and Kauten sees to that care primarily on her own.

“I don’t have people up here to help go out and do stuff with,” Kauten said of her support system.

“For me, just getting out of the 16 Parenting Children with Special Needs / Volume 1: Issue 3

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In parenting, Kauten follows her own advice. She does as much as she can with her daughter, whether she is pushing her down the clearance aisles in Target to scout for good deals or taking her fishing on a sunny day, a pastime that MacKenna particularly enjoys.

Perhaps that love for her daughter is what allows Kauten to walk courageously with grace and poise, with the triumph and determination of a mother’s love. It is a love that enables her to keep faith amidst difficulty and confidence amidst uncertainty – to push forward when life is difficult, to rejoice when life is easy.

“It’s the little things,” Kauten said. “There’s always something little.

Always.”

Whatever the challenge may be, the love Kauten has for her daughter MacKenna will almost certainly see her through – and that in itself is something to be celebrated.

When Kauten was 19, she was unsure of the way her life would play out. Now, she knows that being unsure is okay.

“We just try to see day-to-day,” Kauten said, yet she maintains high aspirations for her daughter. “What I would love to see is for her to have her own independent way to communicate with other people and at some point hopefully operate her own chair – but that [requires] getting into the right clinics with the right people to push her where she needs to be.”

While she is still looking for the right clinics, Kauten is confident that life will play out as it is supposed to. In the meantime, she focuses on the blessing of being a parent to an exceptional child.

“It’s a choice to be a mom,” Kauten said. “But to be a mom of a child with cerebral palsy is a privilege.”

Sitting across from Jenettie Kauten three days after Christmas reminded me of something Maya Angelou once said: “Love recognizes no barriers. It jumps hurdles, leaps fences, penetrates walls to arrive at its destination full of hope.”

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HEALTHY

Living

Treating spina bifida at Shriners ® Hospitals for Children – St. Louis By the Pediatric Orthopaedic Specialists at Shriners Hospitals for Children

S

pina bifida, which literally means “cleft spine,” is the incomplete development of the brain, spinal cord and/or meninges (the protective covering around the brain and spinal cord). It is the most common neural tube defect in the United States affecting 1,500 to 2,000 babies born each year.

Types of spina bifida

There are four types of spina bifida: • Occulta (hidden spina bifida) is the mildest and most common form in which one or more vertebrae are malformed. In this condition, the gap in the spine is small and a dimple, hairy patch, dark spot or swelling may appear on the skin over the gap. This form of spina bifida is present in 10–20

18 Parenting Children with Special Needs / Volume 1: Issue 3

percent of the general population and rarely causes disability or symptoms.

• Closed neural tube defects are a diverse group and occur when the spinal cord is marked by malformations of fat, bone or meninges. In most instances there are few or no symptoms; in others it causes partial paralysis with urinary and bowel dysfunction.

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• Meningocele occurs when spinal fluid and meninges protrude through an abnormal vertebral opening; the malformation contains no neural elements and may or may not be covered by a layer of skin.

• Myelomeningocele is the most severe and occurs when the spinal cord/neural elements are exposed through the opening in the spine, resulting in partial or complete paralysis of the parts of the body below the spinal opening. The impairment may be so severe that the affected individual is unable to walk and may have bladder and bowel dysfunction.

Complications of spina bifida

Spina bifida complications can range from minor to very severe physical and mental disabilities. However, most people with spina bifida are of normal intelligence. The higher the malformation occurs on the back, the great the amount of nerve damage and loss of muscle sensation and function.

Many children with myelomeningocele also experience Chiari II malformation – in which the brain stem and hindbrain protrude downward into the spinal canal or neck area. This can compress the spinal cord, causing many difficulties with breathing, feeding and upper arm function.

Chiari II malformation can also cause hydrocephalus, which is commonly treated by implanting a shunt (hollow tube) in the brain to drain the excess fluid into the abdomen.

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Some children will have a tethered cord, which prevents movement of the spinal cord during growth. It can cause pain, increasing paralysis and spasm in lower extremities. In these cases, a tethered cord release may be required.

Children with both myelomeningocele and hydrocephalus may have learning disabilities, including difficulty paying attention, problems with language and reading comprehension, and trouble learning math.

Treatment of spina bifida

Treatment for children with spina bifida at Shriners Hospitals for Children® — St. Louis is comprehensive. A full team of neurologists, urologists and other specialists are on hand during clinic days for patients with spina bifida so that families can have all the services they need under one roof in one day.

Treatments vary with the severity of spina bifida, but the common denominator is that a high level of parent and family involvement is required.

Possible treatments for spina bifida: • Shunting for hydrocephalus

or prevent spinal deformities such as scoliosis and kyphosis • Bladder and bowel training programs which may include clean intermittent catheterization coupled with medication to increase bladder tone and possible urinary diversions • Our specialists teach children and families the techniques of frequent skin checks, pressure relief techniques and keeping skin dry and clean, as well as how to treat pressure sores.

• Occupational and physical therapy helps strengthen muscles and trains children in activities of daily living, use of adaptive equipment, providing orthotic devices and training in use of equipment such as braces, splints, standing frames, walkers and wheelchairs.

• Family and patients are trained to recognize the symptoms of shunt malfunction such as lethargy, nausea, vomiting, headaches, irritability and decreased strength in arms and hands.

• Nutrition is also an important part of the treatment plan; children are encouraged to eat a diet high in fiber, fluids and to maintain weight control.

• Treating bone deformities and muscle weakness with braces, crutches or walkers to aid ambulation; surgical correction of the hip; or orthopaedic surgery to reduce Volume 1: Issue 3 / Parenting Children with Special Needs 19

Screen Time

By Emily Goodwin MD, FAAP

L

et’s talk about screen time.

Remember life before smart phones? Most of us parents are quite attached to our own screens for a variety of reasons. Screens can be helpful tools for receiving and tracking information, communicating with others, reminders, directions, organizing info, and entertainment.

Likewise, technology can be addicting, distracting, and ironically make us less engaged with the people around us. Not only that, but more time on screens usually means less time is spent being physically active, getting enough sleep, or engaging in other ways that promote development.

High levels of screen time are associated with increased risk of obesity and poor sleep. Increased screen time is also associated with decreased parent-child interaction as well as cognitive, social and emotional delays.

Screen time is a prevalent part of our lives. Screens can be beneficial and are used for everything including education and communication. Tablets and assistive technology such as augmentive communication devices have been wonderful resources for children with special needs.

Too much screen time can be detrimental though. Parents often turn to technology as strategies for distraction or calming children. Even I use screens to distract or calm during medical procedures, but it is important that kids learn other ways than screens to calm down or cope with boredom. Reliance on screens can lead to difficulty with limit setting or selfregulating emotions.

Engaging in hands-on learning, interacting with others and the environment and being active are essential to healthy development.

I am certainly not suggesting that you eliminate screen time, but I want to provide

20 Parenting Children with Special Needs / Volume 1: Issue 3

some practical ideas of ways to limit screen time for your child(ren).

The American Academy of Pediatrics (AAP) has a policy statement as well as many great resources about screen time including tools to make your own media use plan for your family (www. healthychildren.org/MediaUsePlan). Be sure to check it out!

The AAP recommends: • Avoid screens under age 2 years. If less than 18 months, avoid use of screen time other than video-chatting (think with grandma and grandpa).

• Between 18-24 months, avoid if possible but if you introduce limited screen time choose high-quality programming.

Watch it with your children and engage them throughout to help them understand what they’re seeing.

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• Ages 2-5 years, limit to no more than 1 hour per day of highquality programs that you watch with them.

• For children ages 6 and older, place consistent limits on the time spent using media, and the types of media, and make sure media does not take the place of adequate sleep, physical activity and other behaviors essential to health.

• Designate media-free times together, such as dinner or driving, as well as media-free locations at home, such as bedrooms.

• Have ongoing communication about online citizenship and safety, including treating others with respect both online and offline and not sharing personal information with strangers.

If your child has developmental delays, these rules still apply including setting time limits and co-viewing high quality programs.

What counts as “high quality programing?” High-quality programing refers to media that is developmentally appropriate, educational or teaches good values and intrapersonal skills.

This applies to apps as well. Some are more educational than others.

Ensuring content is appropriate is yet another reason to watch with your child. You can use TV ratings to help avoid exposure to sex, drugs, and violence. I recommend looking at https://www. commonsensemedia.org for tips and recommendations. Of course, use your best judgment. The website also has many educational app recommendations including for kids with special needs and

instructions on how to use accessibility settings on your devices for particular needs such as vision or hearing impairment or specific learning needs (https://www.commonsensemedia.org/guide/ special-needs).

When screens are used as augmentive communication devices, this does not mean you need to remove this communication method!

However, it may mean limiting time or access to any games that can be played on the device. It is important to also engage your child in other activities where the communication device is accessible if needed, but is not the focus of the activity.

Ways to limit screen time: • Utilize parental controls and settings to both monitor screen time and/or set time limits on use • Consider a screen free day or week • Charge devices away from children’s access (not in their bedrooms) at night • Identify times the device must be off or in do not disturb mode (recommend mealtime, 1 hour before bedtime, etc) • Turn off “background” TV (allow silence or music or white noise instead) • Use only one screen at a time

Find out why Every year-shortly after delivery, thousands of children are admitted to Neonatal Intensive Care Units. Often doctors or hospitals are too busy to review the records and tell you why this happened to your baby. We can help you obtain the records and find the answers.

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Volume 1: Issue 3 / Parenting Children with Special Needs 21 21

INDEPENDENT

By Kari Wiss

Living

F

rom the moment we wake up to the moment our heads hit the pillow, our days are busy…busy with work, school, preparing meals, doing dishes, and laundry. As a parent of an adult child with a disability, these days also include various therapy appointments, specialized doctor visits, therapy exercises to do at home, making foods your child can safely eat, ensuring adaptive equipment is ready for use, medication oversight, and so on and so on. All of these tasks lead to an overwhelming sense of stress…and stress is a leading factor in health-related problems among caregivers.

As a parent of an adult child with a disability, you are a Super Parent. And as a Super Parent, you are Super at taking care of everyone else. In the New Year, take time to also care for yourself so you can be the best Super Parent to your family: • Slow Down. There are way too many things bombarding our time each and every day. Take time to consciously slow down. You know the saying “stop and smell the roses”? Well, I’ll take that one step further…stop, smell the roses, and then put them in a vase so you can enjoy them.

• Smile. Did you know that endorphins are released when you smile?

Endorphins make us feel happier and less stressed. Endorphins are also released when we exercise. Hmmm…run a mile or smile for an hour to release some endorphins? I’ll take smiling.

22 Parenting Children with Special Needs / Volume 1: Issue 3

Being a Super Parent in the Moment

• Laugh a little…or a lot. Laughing expands our lungs and gets oxygen running through our bodies. Hey—that’s like exercise, too, right??

• Be in the moment. Being in the moment, even in challenging moments, means being connected to the now in all its heartache or glory. As a parent of a person with special needs, you can’t always control the moments, but you can be in charge of them.

Take charge of your moments. They are all we truly have.

To learn more about Developing Potential, please visit www.developingpotential.org.

Kari Wiss, Director of Operations/Staff Training and Development at Developing Potential, Inc. Kari holds a bachelor’s degree in Psychology from the University of Central Missouri and has been with Developing Potential since 1999. Kari is a Certified Gentle Teaching Mentor and a member of the Heart of America Gentle Teaching Mentoring Network. She provides training at community events to educate stakeholders about people with developmental disabilities. She has presented at local and national conferences for both Therap and Gentle Teaching.

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“His Smile Lights Up the Room”

An Interview With Kimberly Franklin, Pediatric Nurse for Craig HomeCare We hear from many Craig HomeCare parents that their child’s nurse is like family. At this time of year dedicated to hearts and love, we talked with a pediatric nurse about the loving bond between nurse and patient.

Kimberly Franklin is an LPN (Licensed Practical Nurse) who cares for one 12-year-old boy through Craig HomeCare. She is married to her high school sweetheart and they have two boys of their own, Clint (20) and Pete (17). A Hughesville, MO native, Kim and her family live on a farm complete with cattle, dogs, cats and chickens. Kim has been a nurse for 10 years.

Tell us about the child you care for and your responsibilities.

My kiddo is in 7th grade, and I’m with him all day at school. He is wheelchair-bound with very little movement on his own. He has a traumatic brain injury and is completely nonverbal. I am responsible for total patient care, including feeding, toileting, diaper changes, medications— anything he needs.

Are there any special activities you like to do with patients for Valentine’s Day? Last year, in the elementary school, my kiddo and I fingerpainted Valentine’s Day cards for his mom and sister. Now, we do things to help Mom and the family feel like they are there, like sending selfies. We make things out of clay.

Anything with TOUCH. My kiddo loves to feel and touch everything.

If your child has to stay in the home, make homemade decorations and do anything to make the day a little different than normal. Ask teachers and friends to send Valentine’s Day cards. Leave your Christmas tree up and hang hearts. Christmas lights are good for some kiddos because they draw attention.

My kiddo and I take many trips to the school cafeteria during the holiday season so he can feel the Christmas tree.

What do you love about being a pediatric nurse?

I take him to classes and help him with position changes throughout the day. I read books to him, hold his hand to help him draw, and to interact with friends. His twin sister is able to come see him throughout the day and interact with him. The noises in the classroom and the school bring him lots of joy.

My kiddo has a smile that lights up the room. If I can make him smile with something I’ve said or done, it makes my world. His smile puts the little stresses of life on the back burner. It never gets old to see his face light up when he hears my voice.

What inspired you to go into nursing?

Every single day he teaches me. He reminds me to stop and take a minute to enjoy my surroundings. Being a nurse at Craig HomeCare has taught me that the simple things are sometimes more important than the big things. I don’t take as much for granted. It has humbled me and makes me want to get up every day and go make his day that much brighter.

My mom was a single parent and my younger brother was sick a lot with severe asthma when we were little. I remember us spending Thanksgiving one year in the hospital. I was my brother’s nurse when my mom couldn’t be. It ingrained in me the desire to help others.

I’ve wanted to be a nurse since high school. I always had a desire to try to make a difference in people’s lives.

We hear a lot from parents that their child’s nurse is like family. How does this loving care impact the children?

It’s changed my life, and I hope it’s changed his.

Kim Franklin is an LPN that has worked for Craig HomeCare for two and a half years serving the same client. She provides services in both the home and the school.

Kids’ emotional health is just as important as physical. My kiddo and I have had a bonding connection and love since day one which makes everything easier. The kiddo feels safe and taken care of and moms and dads feel less pressure because they know the child is being taken care of. It’s truly special.

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Volume 1: Issue 2 / Parenting Children with Special Needs 23

Driving with Special Needs

When and How to Best Prepare Your Child

A

By Annette Maggard Lewer, MOT, OTR, CDRS

s a parent, you tend to worry about your child’s future.

What will their life will be like when you are no longer around? A parent of a child with special needs often feels even greater concern when they ponder this question.

Will my child with special needs be able to live on their own? Will they have a job? Will they be able to drive? This last question often can impact the success of the first two questions. If the child is not able to drive to work, school, errands, or the grocery store, life can be more challenging.

In my profession as a certified driving rehabilitation specialist, I am finding that adolescents of all abilities may be less equipped to learn to drive than in previous decades. There seems to be more hesitation and fear surrounding driving for the adolescents of today, whether they have special needs or not. There is a lack of awareness of driving habits, rules, and routes. The loss of driver’s education in many school systems contributes to these issues.

So how does a parent decide when to their child may be ready to learn to drive? What options are out there for learning? What if the child needs adaptive equipment? Are there things parents can do to facilitate the process? Here I will help you sort through these questions.

When Is My Child Ready to Drive?

There are minimum ages before states will allow instruction to begin. In Kansas (http://www.ksrevenue.org), this is 14 years old and in Missouri (http://dor.mo.gov/drivers/) it is 15 years old.

However, this really is the minimum. This does not mean that all adolescents will be ready at that time.

24 Parenting Children with Special Needs / Volume 1: Issue 3

Many factors play into when a child is ready to try learning to drive: maturity level, physical abilities, cognitive skills, visual skills, and child’s schedule. Will they have the time and energy, judgement, and desire to learn?

I often recommend that parents wait to approach driving until their child shows responsibility to do their homework, is compliant with medication schedule, is able to shop and pay independently, and completes chores without constant reminders. There should also not be a safety concern with leaving them alone for several hours.

Many states, including KS and MO, are adopting graduated driver’s licenses. This involves increasing driving privileges by age and driving record. Specific details can be found on the websites for your state.

According to The National Highway Traffic Safety Administration (NHTSA- www.nhtsa.gov), “Young drivers, particularly 16- and 17-year-olds, have high fatal crash rates because of limited driving experience and immaturity that often result in high-risk behavior behind the wheel. A more comprehensive program – the graduated driver licensing (GDL) system – gives novice drivers experience under adult scrutiny and protection by gradually introducing more risky driving conditions. In fact, multiple studies report GDL systems reduce the number of 16- and 17-year-old-driver crashes.”

For the child with special needs, they may require more time than their peers to reach the milestones required for safe and independent driving. Your physician, educators, or school professionals may be good resources to help you determine when it is appropriate.

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What Are the Options for Learning?

When you decide that your child is ready to learn to drive, there are various options. An online or classroom only driver’s education course can help solidify knowledge of rules of the road. There are also online activities provided by insurance companies or auto safety organizations to address teen safety. A parent or trusted adult may teach the child. Driving instruction through the school system or private lessons may be pursued.

If the new driver is unable to pass DMV testing after several attempts, there are numerous collisions or moving violations, lots of anxiety about driving, parents have safety concerns, the child has visual limitations, may need specialized equipment, or alternative teaching approaches are required, then they may benefit from seeking out a driving rehabilitation specialist.

A certified driving rehabilitation specialist is someone who has received specialized training and passed a certification examination to show they are qualified to address driving needs for individuals who have an injury, illness, or development delay that has or may impact their ability to drive. In this role, the DRS typically will evaluate the person’s physical, cognitive, and visual abilities in order to determine potential ability to drive.

After this evaluation, a plan is developed. That plan may entail activities for the family to complete, additional therapy, or simply more time to mature and develop strategies. The plan could suggest driver’s training to be provided for compensatory techniques, laying a foundation of good driving habits, and/or use of specialized equipment to control the vehicle.

Unfortunately for some, driving may just be a bad idea. In that case, the DRS can help guide the family toward transportation resources.

More information about ADED (The Association for Driver Rehabilitation Specialists) can be found on the website http://www. aded.net.

What If Adaptive Equipment is Suggested?

A DRS/CDRS can help determine if adaptive equipment is needed to help control the vehicle or access turn signal, wipers, etc.

Training on safe and proficient use of the equipment should be completed prior to any installation in a vehicle.

Depending upon the type of equipment recommended the cost can vary from a simple mirror of $5.00 up to a van conversion of $80,000. Vocational rehabilitation services in KS and MO may help with costs if they are actively working with the individual.

Some nonprofits that advocate for individuals with disabilities offer programs that may help pay for adaptive devices. Automotive insurance may cover all or part of the cost of adaptive equipment if the need for such equipment is a result of a motor vehicle crash.

In addition, most major vehicle manufacturers offer rebates on adaptive equipment, usually up to $1,000, provided you purchase a vehicle less than one year old. Your local automobile dealer can supply information on these programs.

National Mobility Equipment Dealers Association (NMEDA- www. nmeda.com) members are also familiar with vehicle manufacturer rebates, can help you apply for these rebates — and can provide prepurchase advice about the type of vehicle that will accommodate your adaptive equipment needs. Some states waive the sales tax for PCWSN.com

adaptive devices if you have a doctor’s prescription for their use.

The cost of adaptive equipment may also be tax deductible.

How Can Parents Facilitate Driving?

I suggest working on pre-driving skills at a young age. My daughter was given the task of locating our car in parking lots from the age of about 4 years old and now at 9, she comments when vehicles stop in the wrong places, don’t use signals, or drive too fast. Predriving activities that enhance skills can make it easier to learn to drive. They allow the child to focus more on the actual control of the vehicle and integrating rules of the road while in motion more smoothly than if they must worry about how to turn while thinking about where to turn.

Motor activities to work on coordination and body positioning in space such as dance, yoga, karate, riding a bike/tricycle, or participating in sports are good to consider. Visual activities to work on scanning skills are also helpful such as games looking for state license plates, “slug bug”, and car bingo. There are also more involved passenger activities as the child is older such as reading traffic signs, finding all the cars of a specific color, spotting all the red lights, or looking for addresses.

Work on route finding from your house to commonly travelled places such as a friend’s house, favorite restaurant, or school. Ask your child to give you directions as you drive or walk. Many parents assume their children know these routes, but often find it is not the case.

Set a good example in your own driving. A child often spends more time in a vehicle with their parent than other drivers. If we are asking them to be more attentive to driving skills, be prepared for them to watch you. Talk to them about the choices you make when driving. Get a copy of the driving handbook for your state and read it with them. It never hurts to brush up on the rules.

Most of these activities will obviously involve transitioning their attention away from electronic devices and onto the road and their environment. There are also some supports out there such as AutoCoach, a free app to help a parent of a teen with special needs lesson plan for learning to drive in their state.

Some families may have to make several different attempts over time to find success. Each time what is learned can help with moving forward. Even with individualized, professional training, some new drivers may require several trials in our driving program at Ability KC over a span of years to get the self reliance they are seeking. But what a pay off when they are safe and independent with driving!

When that child who thought they could never get behind the wheel is actually there, the feeling of freedom and possibility is evident. When they are driving down the road, you can’t tell if they are in a wheelchair, using hand controls, or special strategies. With some effort, many people with special needs can find their road to independence.

Annette is the Driving Program Coordinator for Ability KC. She holds a Bachelors and a Masters degree in Occupational Therapy, and is a Certified Driver Rehabilitation Specialist. Annette has been at Ability KC since 1992.

Volume 1: Issue 3 / Parenting Children with Special Needs 25

PRACTICAL

Matters

By Angela Nap

ABA Therapy:

Center-Based vs.

Home-Based The Inside Scoop

A

s a Board Certified Behavior Analyst (BCBA), I receive a great deal of questions when I meet parents for the first time. “How many hours a week will they receive?”, “What will you work on?” and “Is centerbased or in-home therapy better?”, are just a few of the questions I hear. In this piece, I want to focus on that third question, and the answer isn’t one size fits all. It really depends on the needs of your child.

There are many factors to take into consideration when it comes to deciding the best environment for your child to receive ABA therapy. When I began my career, I spent the majority of my time providing ABA services in an in-home setting. As I began to expand my experience into center-based learning, it became clear that both settings provided specific benefits to the ABA experience.

While I will discuss a few of the advantages of each option, some of the other factors to take into consideration are family transportation; scheduling availability and unique treatment needs of your child.

What are the advantages of center-based therapy?

Center-based services increase the opportunity to work on socials goals with peers. This may include turn taking, sharing toys or working on conversation skills. This environment allows the therapists to minimize or even eliminate distractions otherwise found in home settings. The goal is to teach skills in this structured environment and then transfer them over to more natural settings such as the home or community.

Center-based is especially advantageous when preparing a child for school. Some of these skills can include engaging in group activities, completing daily routines (i.e. hanging up their backpack and coat), and waiting in line to transition to the next activity.

26 Parenting Children with Special Needs / Volume 1: Issue 3

What are the advantages of home-based therapy?

Home-based therapy allows our therapists to provide services in everyday situations in your home. Services that are provided in the home have many advantages as well. More family involvement is one of the leading benefits, as parents are able to watch therapy and ask questions to RBTs or BCBAs in the moment. Parents tend to find this setting more accommodating to their schedule, especially if the center is a great distance away.

This setting is also ideal for teaching daily living skills. Depending on the age and skill level, these can include making the bed, brushing teeth, or learning to cook. These skills are best targeted in the environment in which they are most likely to occur. And while center-based therapy is a great way to avoid the distractions that occur in the home, home-based therapy is a good way to acclimate your child to coping with those distractions.

Can my child have both in home and center based?

Autism doesn’t affect just one area of your child’s life, so receiving both in-home and center-based services can be a well-rounded option. At Patterns Behavioral Services, we strive to provide parents with all of the necessary information to help them decide which environment is most beneficial to their child. No matter what location your child receives therapy, their goals will be set up to achieve them in the home, center, community and school as applicable to promote independence with these skills.

Angela Nap is a Licensed Behavior Analyst and the Clinical Director of Patterns Behavioral Services, Inc. Patterns provides ABA center based and in-home services throughout Kansas City and outlying areas. Patterns employs registered behavior technicians to provide direct therapy and offers parent training as well.

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ResourceGuide

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Paraquad Information and referral service about resources for people with disabilities including: • Accessible Housing Clearinghouse • Financial assistance with home modifications, rental and mortgage payments, • Employment program, • Benefits planning assistance • College for Living including continuing education, supported education, supported employment. • DEAFWay Interpreting Services • Deaf and Hard of Hearing Services – develop independent living plans • Personal Assistance Services – people with disabilities hire, train and supervise their own personal attendants. • Youth and Family Program • Public Policy Advocacy Program • 314.289.4200 • www.paraquad.org

Asthma/Allergy

Allergy, Asthma & Immunology Institute of St. Louis Resource for the diagnosis and treatment of patients with allergic conditions and immunologic illnesses. • 314.833.5309 • www.allergyasthmaimmunologyinstitutestl.org Allergy and Asthma Network Mothers of Asthmatics Strives to end asthma deaths and suffering on a national level. • aanma.org • 800.878.4403 Asthma and Allergy Foundation of America Improves the quality of life for people with asthma and allergic diseases through education, advocacy and research. • aafa.org • 800.727.8462 Asthma and Allergy Foundation St. Louis Asthma and Allergy Foundation of America Improves the quality of life for people with asthma and allergic diseases through education, advocacy and research • 314.645.2422 • Aafastl.org The Food Allergy Network (FAN) Raises public awareness, provides advocacy and education, advances research on behalf of those affected by food allergies and anaphylaxis • foodallergy.org • 800.929.4040 PCWSN.com

Gateway Asthma and Allergy Relief • 618.277.1413 or 314.421.0663 • www.asthma-allergyrelief.com Arthrogryposis/Arthrogryposis Multiplex Congenita Provides and encourages understanding and mutual support among anyone affected with the diagnosis of arthrogryposis multiplex congenita (AMC) • amcsupport.org • 800.929.4040

Attention Deficit Disorder

Children and Adults with Attention Deficit Disorder (CHADD) Provides education, advocacy and support for individuals with ADHD. • chadd.org • 301.306.7070

Autism

AFA Academy (Formerly Howard Park Center) ACTION FOR AUTISM (AFA) is a St. Louis-based 501(c)(3) charitable organization, founded in 2008, to address the growing need to assist children and their families with Autism Spectrum Disorders (ASD). AFA serves children and families who reside within a 250 mile radius of St. Louis. ACTION FOR AUTISM provides financial support to families, while also facilitating therapy and learning, as well as preparing children for a successful future, within its AFA Academy facilities, providing services for children through age 21. • 636.227.2330 • 636.405.2701 • www.afastl.org Autism Concepts Offers behavior analysis (ABA) and verbal behavior analysis (VBA) for children with autism spectrum disorders, language delays, challenging behaviors and other developmental delays.

In-home ABA services that includes a team of therapists and a BCBA to work with your child in developing skills and addressing behavioral needs. • autism.concepts.com • 800.345.0448 Judevine Center for Autism Services to people with autism, including therapy, residential care, education, family support.

• 1.800.780.6545 • www.judevine.org

MO-FEAT MO-FEAT (Missouri Families for Effective Autism Treatment) provides an outstanding 187-page Statewide Autism Resource Directory. MO-FEAT also coordinates the “A-List,” a “parents only” discussion list about Missouri special education resources and issues in autism. Parents can apply to join by contacting MO-FEAT at info@mofeat. org or call 314.993.0806 or 800.275.8988.

Batten Disease

Batten Disease Support & Research Association Provides information, supporting families and promoting research efforts for families of children and young adults with Batten Disease.

• bdsra.org • 800.448.4570

Brain Injury

Brain Injury Association of Missouri Provides support, education, recreation, referral services and advocacy for persons with brain injury and their families as well as professionals and the community. Support group meets the second Tuesday of each month at 7 p.m. at two locations . Hillside Christian Church, 900 NE Vivion Road, Kansas City, and Truman Medical Center, Lakewood, 7900 Lee’s Summit Road in Kansas City. • biaks.org • 800.444.6443 Brain Injury Foundation of St. Louis Provides innovative community-based solutions to meet the specific social and vocational needs of individuals with brain injuries.

• 314-645-7230 • bifstl.org

Brain Tumor

American Brain Tumor Association Strives to eliminate brain tumors through research and to meet the needs of brain tumor patients and their families. • abta.org • 800.886.2282 Pediatric Brain Tumor Foundation We offer free educational resources about brain tumors, a toolkit for newly diagnosed families, college scholarships and much more.

• curethekids.org • 800.253.6530

Volume 1: Issue 3 / Parenting Children with Special Needs 27

ResourceGuide

Y O U R C O M PA N Y C O U L D B E H E R E

Guide also available on PCWSN.com

BECOME A SPONSOR! Contact Us: advertise@pcwsn.com

National Brain Tumor Society Comprehensive resource (research and patient services) for patients, families, caregivers, researchers, and medical professionals.

• braintumor.org • 617.924.9997

Cancer/Leukemia/Lymphoma

American Cancer Society/St. Louis • 314.286.8100 Leukemia & Lymphoma Society Mid America Chapter Leukemia & Lymphoma Society exists to find cures and ensure access to treatments for blood cancer patients. We are the voice for all blood cancer patients and we work to ensure access to treatments for all blood cancer patients.

• lls.org • 800.955.4572

Cerebral Palsy

4MyChild Provides a comprehensive resource and compassionate voice for all things related to caring for a child with Cerebral Palsy, Erb’s Palsy, and other neurological injuries. • cerebralpalsy.org • 800.692.4453 Cerebral Palsy Sports Program Coordinated by physical therapists at Children’s hospital, provides sports opportunities for children with CP. • 314.454.KIDS or 1.800.678.KIDS • www.stlouischildrens.org

Crohn’s & Colitis

Crohn’s & Colitis Foundation of America CCFA is a nonprofit, volunteer driven organization dedicated to finding to cure for Crohn’s Disease and ulcerative colitis.

• ccfa.org • 314.863.4747

Deaf and Hard of Hearing

American Society of Deaf Children (ASDC) Provides support, encouragement, and information to families with deaf children, supports sign language at home, school and in the community • deafchildren.org • 800.942.2732 Missouri Commission on the Deaf and Hard of Hearing Advocates for public policies, regulations and programs to improve the quality and coordination of existing services for individuals with hearing loss. Promotes new services when necessary. • mcdhh.mo.gov • 573.526.5205 St Joseph Institute for the Deaf We believe every child, everywhere, has the right to select a communication method with their family. When it’s a Listening and Spoken Language option, St Joseph Institute for the Deaf (SJI) has been helping children with deafness since 1837. Our only job for 182 years has been to teach children to listen, speak and eventually, read. Our worldwide teletherapy program, iHear, provides Listening and Spoken Language education and support for your child, your family in tandem with your school district. Look us up on the web to view videos, parent stories, images, and more at our website, Facebook page and Instagram. Call us today to see how we can help your child!

• www.sjid.org • 314.918.1369

Down Syndrome Association of Greater St. Louis Benefits the lives of people with Down Syndrome and their families through individual and family support, education, advocacy and public awareness. • 314.961.2504 • www.dsagsl.org St. Louis Children’s Hospital • http://www.stlouischildrens.org/our-services/ down-syndrome-center Pujols Family Foundation • http://www.pujolsfamilyfoundation.org

Education

University of Central Missouri THRIVE Program Allowing young adults with intellectual or developmental disabilities to participate in a two-year residential college experience at University of Central Missouri in Warrensburg, building skills to transition from home to independence.

• ucmo.edu/thrive • 660.543.4204 University of Iowa REACH Creating a living/learning campus experience where young adults with multiple learning and cognitive disabilities are empowered to become independent, engaged members of their community. • education.uiowa.edu/reach • 319.384.2127 Delta Gamma Early intervention services for children with visual impairment. • 314.776.1300 • www.dgckids.org

Cleft Palate

AboutFace USA Assists all persons with facial differences to have a positive self-image and self-esteem so that they can participate fully in their communities.

• aboutfaceusa.org • 800.665.3223

Central Institute for the Deaf Central Institute for the Deaf is a fully accredited auditory-oral school where hearing-impaired children learn to listen, talk, read and succeed.

They specialize in excellence in auditory-oral deaf education for children birth to 12. Generous private support makes CID affordable for families of children with hearing loss who qualify, regardless of ability to pay.

• 877.444.4574 • www.cid.edu

First Steps First Steps offers coordinated services and assistance to young children with special needs and their families. First Steps is designed for children, birth to age 3, who have delayed development or diagnosed conditions that are associated with developmental disabilities. Families can contact their local First Steps office for more information by calling toll free: 866.583.2392 • 573.751.5739 • www.mofirststeps.com

Cystic Fibrosis

Diabetes

IEP (Individual Education Plan) pamphlet Helpful guide on navigating the IEP process from start to finish, as well as problem-solving tips for when problems arise.

Heart of America Chapter of the Cystic Fibrosis Foundation Serves Kansas and Western Missouri families affected by Cystic Fibrosis • cff.org/Chapters/ heartofamerica • 913.384.8997

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Juvenile Diabetes Research Foundation Strives to find a cure for diabetes and its complications through support of research • jdrf.org

Down Syndrome

National Down Syndrome Society Serves as the national advocate for the value, acceptance and inclusion of people with Down Syndrome. • ndss.org • 800.221.4602

28 Parenting Children with Special Needs / Volume 1: Issue 3

Special School District Resource Center Knowledgeable staff and a wealth of information for families of children with disabilities.

• 314.989.8100 • www.ssdmo.org/cool_tools/ fcrc.html

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Missouri Developmental Disability Resource Center (MODDRC) Offering a network of support options so that individuals and families are well informed, hopeful, connected within their communities, and know they are not alone in their experience with disability. • moddrc.org • 800.444.0821

Epilepsy Foundation of the St. Louis Region Prevention, education, and advocacy services to people with seizures, their families, and the community. Includes employment, independent living, and social services.

• 314.781.4949 or 800.264.6970 • www.epilepsyfoundation.org

Missouri Parents Act (MPACT) Assisting Missouri parents in their effort to effectively advocate for their children’s educational rights and services.

• missouriparentsact.org • 800.743.7634

CeCe Cares Pediatric Epilepsy Foundation Providing comfort to children diagnosed with pediatric epilepsy, helping families burdened with the high cost of medical care, and funding research focused on finding a cure.

• cececares.org • 312.207.2369 ext. 225

Fragile X

Missouri Protection and Advocacy A federally mandated statewide system which provides protection of the rights of persons with disabilities through legally based advocacy.

• 573.659.0678 or 1.800.392.8667 • www.moadvocacy.org

General

MPACT Parent Training and Information A statewide parent training and information center serving all disabilities. MPACT’s mission is to ensure that all children with special needs receive an education that allows them to achieve their personal goals.

• 1.800.743.7634 • www.ptimpact.org

Fragile X Resource Center of Missouri Provides support and information to individuals with FXS and their families.

• www.fragilex.org/community/communitysupport-network/southwest/fragile-x-resource-center-of-missouri/ American Association of People with Disabilities Ensuring economic self-sufficiency and political empowerment for the more than 56 million Americans with disabilities. • aapd.com • 880.840.8844 Capper Center Enhancing the independence of people with physical disabilities, primarily children, through assistive technology, speech therapy and more.

• capper.easterseals.com • 785.272.4060 Easter Seals Disability Services Services to adults and children with disabilities, including early intervention, play therapy, camping, respite care, leisure activities, child development, and family support.

• 314.432.6200 • www.eastersealsmidwest.org Family Resource Center Located on the 3rd floor of Children’s Hospital.

Provides a wide array of literature focusing on resources devoted to children’s health and parenting.

• 314.454.2350 • www.stlouischildrens.org Kids Enjoy Exercise Now (KEEN) Provides free one-to-one recreational opportunities for children and young adults with mental and physical disabilities.

• 314.259.5980 • www.keenstlouis.org

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Parents as Teachers Providing a fun, free, early learning-program for soon-to-be-parents and parents of children up to 3 years old. PAT programs provide home visits, playgroups, screenings and resource networks.

• parentsasteachers.org • 314.432.4330 Ranken Jordan Provides care for children with complex medical and developmental needs regardless of ability to pay. • 314.872.6400 or 1.866.845.6400 • www.rankenjordan.org Recreation Council of Greater STL Clearinghouse for information on leisure, recreation and socialization opportunities for individuals with developmental disabilities who reside in the Greater St. Louis Area. • 314.772.2299 • 636.477.7704 • www.recreationcouncil.org Social Security Office A child might be eligible for 3 types of Social Security benefits • Social Security Dependents Benefits (SSDI) for children of disabled or deceased parents.

• Supplemental Security Income (SSI) benefits

are payable to children under 18 years old who have disabilities and limited resources.

• Medicaid automatic for patients with severe impairments regardless of parental income.

• 1.800.772.1213 • www.socialsecurity.gov/ applyfordisability/child.htm St. Louis Arc Support and services to adults and children with intellectual and developmental disabilities, and their families. Belle Children’s Services of St. Louis Arc offers an inclusive Center-Based Preschool that allows children with disabilities opportunities to be included in a typical classroom.

They also provide outreach services offering therapy for children in the community, parent education programs on topics like development or legal issues, and workshops that help support parents and siblings of children with disabilities.

• 314.569.2211 • www.slarc.org St. Louis Regional Center Service coordination for anyone with a developmental disability, such as mental retardation, cerebral palsy, head injuries, autism, epilepsy, certain learning disabilities. • 314.244.8800 or 1.800.358.7665 • www.dmh.mo.gov/dd Team Activities for Special Kids (T.A.S.K.) T.A.S.K. provides year-round instructional sports program that provides athletic and social opportunities to kids with special needs. The purpose of the program is to help build self-esteem and skills in children with special needs.

• 636.343.TASK (8275) • www.tasksports.org Variety – The Children’s Charity Improving the lives and mobility of physically and mentally challenged children. Grants are awarded to select children’s agencies each year, while families are assisted through the Kids On The Go! mobility program, which provides vans with lifts, wheelchairs, adaptive bicycles, prosthetic limbs, medical procedures and more.

• varietykc.org The Whole Person Assisting people with disabilities to live independently and encouraging change within the community to expand opportunities for independent living; providing Independent Living Services to residents of the states of Kansas and Missouri.

• thewholeperson.org • 800.878.3037

Volume 1: Issue 3 / Parenting Children with Special Needs 29

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Genetics

Genetics Home Reference Website developed by the National Institue for Health to educate parents about the ways genetic variations affect health. • ghr.nlm.nih.gov

Grief and Hospice Programs

Compassionate Friends Assisting families with the resolution of grief from loosing a child at any age.

• compassionatefriends.org WINGS Seeks to enhance a childs’ quality of life during his or her last months, weeks or days, by offering pain and symptom management and comfort care.

• 314.872.5050 • www.stlouischildrens.org/

Hemophilia

Hemophilia Federation of America Assisting and advocating for the bleeding disorders community.

• hemophiliafed.org • 800.230.9797 National Hemophilia Foundation (NHF) Striving to find better treatments and cures for bleeding and clotting disorders and to preventing the complications of these disorders through education, advocacy and research.

• hemophilia.org • 1.800.42.HANDI

Hydrocephalus

Pediatric Hydrocephalus Foundation Working to find a cure for hydrocephalus • hydrocephaluskids.org

Legal

Children’s Legal Alliance – Legal Services of Eastern MO Free legal assistance to income eligible children who have special education needs. Services include representing children at IEP meetings, due process, suspension or expulsion hearings. Other services include ensuring homeless children have access to education, advocating for access to appropriate special education services, correcting inaccurate or misleading school records. • 314.534.4200 ext.

1311 or 1.800.444.0514 ext. 1311 • www.lsem.org

Kidney Disease

National Kidney Foundation Serving Kansas and Western Missouri Striving to prevent kidney and urinary tract diseases, improve the health and well-being of individuals and families affected by these diseases, and increase the availability of all organs for transplantation. • kidneyksmo.org • 913.262.1551

Learning Disabilities

Learning Disabilities Association of America Advocating for individuals with learning disabilities. • ldaamerica.org • 888.300.6710 St. Louis Learning Disabilities Association (LDA) Services for people with learning disablities and their families, including information, referral, community education, resource library and individual consultation. • 314.966.3088 • www.ldastl.org

Marfan Syndrome

National Marfan Foundation Striving to save lives and improve the quality of life for individuals and families affected by Marfan syndrome and related disorders through research, education and support services.

• marfan.org • 800.8.MARFAN

Multiple Sclerosis

Mid.America National MS Society Mobilizing people and resources to drive research for a cure and to address the challenges of everyone affected by MS. Self-help groups are held to bring together people who share a common life experience, for support, education, and mutual aid. • ksg.nationalmssociety.org • 913.432.3926

Muscular Dystrophy

Muscular Dystrophy Association Fighting against neuromuscular disease. • mda.org Parent Project Muscular Dystrophy Fighting Duchenne muscular dystrophy by funding research, raising awareness, promoting advocacy, connecting the community, and broadening treatment options.

• parentprojectmd.org • 800.714.5437

Rett Syndrome

International Rett Syndrome Foundation Funding research fund for treatments and a cure for Rett syndrome while enhancing the overall quality of life for those living with Rett syndrome by providing information, programs and services.

• rettsyndrome.org • 800.818.7388

Tourette Syndrome

Tourette Syndrome Association Striving to identify the cause of, find the cure for, and control the effects of Tourette Syndrome.

• tsa.usa.org

Tumor/Neurofibromatosis

Children’s Tumor Foundation Improves the health and well being of individuals and families affected by the neurofibromatosis (NF) and neurofibromatosis type 1 (NF1).

• ctf.org • 800.323.7938

Vision Impairment

Alphapointe Association for the Blind Provides rehabilitation, education, and employment services for the blind and visually impaired.

• alphapointe.org • 866.240.1352 Missouri Council of the Blind A support group that provides information and support. Information provided includes scholarships, summer camps, special services program, adaptive technology information, health benefits, employment and legislation issues and public awareness programs.

• 314.832.7172 • www.missouricounciloftheblind.org Rehabilitation Services for the Blind Rehabilitation Services for the Blind (RSB) provides services to people with varying degrees of visual impairment, ranging from those who cannot read regular print to those who are totally blind. • www.dss.mo.gov/fsd/rsb/

Williams Syndrome

Williams Syndrome Association Striving to enrich the lives of individuals and families affected by Williams Syndrome through support, research and education.

• williams.syndrome.org • 800.806.1871

Spina Bifida

Spina Bifida Association Striving to enhance the lives of those with Spina Bifida and those whose lives are touched by this challenging birth defect through education, advocacy, research.

• spinabifidaassociation.org • 800.621.3141

30 Parenting Children with Special Needs / Volume 1: Issue 3

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