PCWSN 2019 issue 5 STL

St. Louis / Volume 1 : Issue 5 / PCWSN.com

NATURE FOR ALL: How experiences in the great outdoors are helping St. Louis families thrive, connect, and grow

ALL ABOUT POOP: CONSTIPATION NEED-TO-KNOWS

“One InchStone at a Time” The Leedle Family Story

MAKING MEMORABLE VACATIONS AND MEETING SPECIAL NEEDS

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FEATURES Sponsored Feature

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All About Poop: Constipation Need-to-Knows

12

“One Inch-Stone at a Time”

18

Bedtime and Morning Routines: The Basics

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Making Memorable Vacations & Meeting Special Needs

By Elizabeth Utterson, MD

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The Leedle Family Story

By Chance Copeland

By Emily Goodwin MD

By Lindsay Devers

DEPARTMENTS

16 Arthrogryposis Healthy Living

By the Pediatric Orthopaedic Specialists at Shriners Hospitals for Children

20 Employing the Gentle Teaching Independent Living

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Model in services for adults with special needs

By Kari Wiss

22 Nature for all Therapy

How experiences in the great outdoors are helping St. Louis families with special needs thrive, connect, and grow

By Sheila Voss

26 How Does Insurance Work?

Practical Matters

By CommunityAmerica Insurance Agency, Guest Contributor

St. Louis /

On the Cover: The Leedle Family overcomes all challenges one inch-stone at a time.

Photo by Lani Palmer, LMTPhotography

NATURE FO R ALL:

How expe riences in the great outd helping fami oors are lies with special need s connect, and thrive, grow

Issue 5 / PCW

SN.com

“One Inch Stone at a Time” The Leedle Family Stor y

ALL ABOU T CONSTIPAT POOP: NEED-TO-KNION OWS

IN EVERY ISSUE

Volume 1 :

STL’s Pedia tric Healt

h and Servi

MAKIN MEMORA G VACATIONS BLE AND MEET SPECIAL NE ING EDS

ces Resou rce Guide

4 Publisher’s Letter 27 Resource Guide Letting Go

Introducing our new and growing comprehensive resources guide for St. Louis! Your guide to health & service providers for adults and pediatrics with disabilities.

PCWSN.com

Volume 1: Issue 5 / Parenting Children with Special Needs

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PUBLISHER’S

Letter

Letting Go

learning how to trust, have faith, and recognize when it was time to let go.

That meeting quickly approached, and when we found our seats in the library, I was surrounded by a staff ready to learn about Brayden and equally ready to help me transition to this new role in motherhood.

This was help we would need the entire way through, from his first day in Kindergarten to his last day as a fifth grader.

W

hen I think back on the past 11 years of my oldest son Brayden’s life, I always think about how the years have literally flown by. Reflecting reminds me that the years have brought a mixed bag of blessings: we’ve had insurmountable trials and tribulations and indescribable joys, and as he finishes his fifth grade year and prepares to head to middle school, I can’t help but reminisce about those beginning days as a mother with a medically complex elementary schooler heading off to his first days of school.

I remember prepping for that first meeting, trying to gather my planner, medical records, a substantial medication list, a wad of tissues, and a bubble I wanted to put him in so he could be protected. Before this time in his life, I was there for him 24/7. Yet before I could blink, I found myself forced to let him begin down the path towards a life of his own - a life where I would drop him off to a school full of germy children and strangers to care for and educate him.

To put it mildly, I was a mess. But it wasn’t the germs, the strangers, or the fears over what would happen while Brayden was in school that had me panicked - it was

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Kindergarten was rough. Brayden missed nearly 83 days of school, but along the way, he accumulated an army of supporters and has the memories to prove it: years of videos of his fellow students sending him get well wishes, countless teacher and staff visits, banners, support from fundraisers - all supports designed to lift him up in times when he needed it most.

As he grew, we learned a whole new way of communication, ensuring everyone was on the same page and Brayden would have successful school years with his classmates.

Looking at my son, one would likely never know all the things he has going on underneath his shirt. He’s got battle wounds of his fight up to this point, reminders of the things he had to adapt to. The school had to adapt, too - they’d never had a child who had a feeding tube or was immunosuppressed due to a kidney transplant. Yet they were willing to learn, and I was willing to help educate them. It’s been a symbiotic relationship and we’ve educated each other.

Yet the thing that strikes me most as I sit and reflect on Brayden’s life up to this point is that my boy is a fighter. There were so many challenges associated with having medical needs: challenges with self-perception, issues in socialization, and a barrage of other issues that go along with having a child who grows up really quickly.

Watching him struggle was devastating whether it was academically, behaviorally, or with depression and anxiety. I had to learn that it’s sometimes impossible to pick your child up when they fall - no matter how badly we want to.

Parenting Children with Special Needs / Volume 1: Issue 5

In the meantime, his struggles, ambitions, and personality have shaped him into an amazing young man. He’s been through every treatment or therapy available, both in and out of school. He’s developed a passion for team sports away from school.

He’s found a loving friend group, a place where he feels needed, and a love for a fishing pole. He’s worked hard to ascertain a toolbox full of coping strategies when life gets hard. Little by little, he’s outgrown that protective bubble I built for him - and he’s shown he no longer needs it.

Right now, I feel like I’m walking into that kindergarten meeting all over again, tissue box in tow. We are surrounded by unknowns and there’s no safety bubble in sight. As the locker doors close and kids run loose in the hallways, I want nothing more than for Brayden to feel at ease.

Watching our children grow up is the hardest thing we do as parents. As somebody once told me, having a child is like having a bow and arrow on your back.

We want our children to be bow, strong and successful, hitting every target every time - but we know that’s not always going to happen. Instead, we just to the best we can, give them guidance, and swallow our fears of letting go.

It’s going to be hard, that’s no lie. And as I watch Brayden walk out the elementary school doors for the last time and into the doors of the middle school, I will probably cry. But I will also remember that first meeting, the fear of the unknowns, and the progress he’s made in the past six years as he’s outgrown his bubble and proven his capability in all of life’s trying circumstances. Then, I’ll reach down, hug him one more time, whisper a word of encouragement, and do as I’ve always done - trust God and let go.

Until next time, Stephanie Myers

PCWSN.com

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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 5 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.

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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? According to the National Sleep Foundation, children between the ages of 6 and 13 need between 9 and 11 hours of sleep at night in order to function optimally.

Parenting Children with Special Needs / Volume 1: Issue 5

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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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.

PCWSN.com

Volume 1: Issue 5 / Parenting Children with Special Needs

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SPONSORED

Feature

All About Poop: Constipation Need-to-Knows

By Elizabeth Utterson, MD

D

id you ever think you’d talk, think and worry so much … about poop? Parenthood comes with plenty of surprises, many unique to the child and family. But poop? That’s pretty universal. As a pediatric gastroenterologist, I hear more concerns than most, but as a mom, I can empathize with all of them.

One of the most common concerns we hear from parents has more to do with NOT pooping than actually pooping. At some point or another, every parent will probably worry about whether their child is experiencing constipation; parents of special needs children worry at an even greater rate.

What is constipation?

We define constipation in two ways: • The passage of hard stools with discomfort • Not passing stool for a number of days, usually more than three days 8

Parenting Children with Special Needs / Volume 1: Issue 3

What are the signs?

While some signs are obvious, others prove a little deceptive.

Especially if your child is non-verbal, these cues can help you determine whether your child is suffering from constipation.

• Absence of bowel movements: Child passes no stool for several consecutive days • Holding: Have you ever noticed your child standing and pushing like he’s trying especially hard to pass a bowel movement? Or maybe he sneaks off to a corner. Believe it or not, those are usually signs that your child is trying NOT to pass a bowel movement. It’s particularly difficult to pass stool standing upright or lying down.

Conversely, if your child is in a squatting position or sits in a more frog-like position, odds are greater he’ll successfully pass the stool.

• Skid Marks: If your child uses the toilet independently, keep an eye on his underwear. If he hasn’t had a bowel movement but does PCWSN.com

have skid marks in his underwear, that could be a sign that the body is trying to clear itself and either the child is holding, or an obstruction is preventing the stool from passing effectively.

What do I do?

We have many tried and true methods for helping relieve constipation, for children of all abilities. Some involve medical intervention, others are more simple lifestyle modifications.

Lifestyle

While you should never worry about calling a member of your care team for guidance, you can usually safely tweak diet at home to see if it helps.

• Hydrate: Kids almost universally don’t drink enough water.

Encouraging better hydration could be just enough to get things moving.

• Increase natural fiber intake: Adding more fruits and vegetables can help encourage the digestive process and production of stool.

In addition to natural fiber, these foods are also high in water content. Be careful of fiber, though. Supplements advertised — and often recommended — to help ease constipation in adults can be counterproductive in children. Too much fiber causes gas, which can make your child even more uncomfortable.

PCWSN.com

• Encourage Activity: This one can be especially tricky with children who have unique needs. If your child is ambulatory, encourage her to run around and burn energy. Activity and movement help spur digestion and make it easier to pass stool.

• Make time: Especially for kids who might be a little more anxious, sometimes the best remedy is a little time, patience and relaxation.

If your child uses the toilet, set aside time for him to sit and relax so the anal sphincter can relax and make it easier to pass stool. We recommend scheduling this time after dinner, when the child has had a meal and is naturally more inclined to start winding down for the day.

Medicine

In children with special needs, natural remedies often aren’t realistic. In addition to the roadblocks Mother Nature throws anyone’s way, you also often have muscle tone limitations, g-buttons and behavioral barriers to manage. In most cases, a little medicine can help do the trick.

• Stool Softeners: We often suggest things like docusate sodium (Colace) or polyethylene glycol (MiraLAX) as a first step toward alleviating constipation with medicine. These are non-stimulant laxatives. They work by drawing water to the stool, making it softer and easier to pass. They do not cause the colon to contract, and don’t result in any dependence issues.

Volume 1: Issue 5 / Parenting Children with Special Needs

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• Stimulant Laxatives: If stool softeners aren’t enough, or if the colon is stretched, your doctor may advise adding a stimulant laxative to work in conjunction with the stool softener. Over time, those medicines which do help the colon contract will improve the colon’s tone.

• Rectal Suppositories: Perhaps the most foolproof way to encourage a bowel movement is through medicine inserted directly into the rectum. This is particularly effective in cases where a blockage is preventing the stool from passing. No. No one likes to go this route. We especially prefer to avoid it in children because an unpleasant experience can cause them to hold in the future. Your doctor will help you understand if and when it’s necessary.

When to call the doctor

You should never worry about calling the doctor for advice or guidance. But there are instances in which you should definitely call your care team: • If your child has a distended abdomen: We don’t want to add more fluid and make that child even more uncomfortable

• Fever with no other indications: Just like with vomiting, if your child is running a fever and the only other abnormality you notice is constipation, call your doctor’s office As with everything when it comes to kids with special needs, we always stress the need for a multidisciplinary approach.

Treating constipation, especially chronic constipation, can require help from a dietitian, physical therapy of the pelvic floor or behavioral therapy. Your care team can assess which interventions will be most helpful in the long run. But, as with all typically abled children, treating constipation also requires a measure of trial and error. The ultimate goal is to find the best combination of interventions to increase the water content of the stool and make bowel movements more regular and easier to pass. While you’re in the thick of it, though, rest assured, you can commiserate with just about any other parent. We’ve all been there.

Elizabeth Utterson, MD, is a Washington University pediatric gastroenterologist at St. Louis Children’s Hospital.

• Vomiting with no other symptoms: If your child is vomiting and has no other symptoms aside from constipation

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.

10 Parenting Children with Special Needs / Volume 1: Issue 5

PCWSN.com

A Career in Care

During her pregnancy, Cherice found out that her role as a mom would be slightly different than most.

Her son, Isaiah, came into the world fighting for his life. After receiving 10 early surgeries because of life-threatening medical concerns, Cherice was told that Isaiah would never walk or talk. Doctors had already given up on Isaiah before he even had a chance.

For Cherice, being a young mother was stressful enough, and then she was told Isaiah also had been diagnosed with Down Syndrome.

She knew nothing about raising a son with special needs, but God gave her the strength and family support to get through the rough times.

Cherice says that she’s highly trusted working at Emmaus. She’s been in family members’ shoes and sees her clients, coworkers and parents as part of her extended family. She loves and cares for everyone as her own. When she fights for her clients, she’s fighting for the future of her son.

Today, Cherice is proud to say Isaiah has showed everyone that said he wouldn't that he could.

Want to learn more about a career as a Direct Support Professional?

Visit www.EmmausCareers.org

“Honestly it has made our family even closer than we were before. Isaiah is key to this family and he brightens everyone’s day” says Cherice.

At first, Cherice took classes and joined different support groups for parents. Finally, in 2012, Cherice took her life experience and started a career with Emmaus Homes.

The mission of Emmaus is to enrich the lives of individuals with cognitive or developmental disabilities by fostering independence, inclusion and self-advocacy.

“I understand how it is to be a parent of a child with special needs. Working at Emmaus has prepared me for Isaiah’s journey into adulthood and proved to me he can live a normal life.”

Looking for a career with a purpose?

Visit www.EmmausCareers.org PCWSN.com

Volume 1: Issue 5 / Parenting Children with Special Needs 11

“One Inch-Stone at a Time” The Leedle Family Story

By Chance Copeland

Photos by Lani Palmer, LMTPhotography

12 Parenting Children with Special Needs / Volume 1: Issue 5

PCWSN.com

S

ome stories are easier to tell – the ones that are hopeful, maybe, or the ones that seem to have a happy ending. The ones where the parents are certain there will be an easier life at the end of a long road. Then there are those which just must be told, stories of strong families with an unshakable faith who cling together and remain strong against life’s uncertainty. This is one of those stories.

Matt and Danielle Leedle first met when Danielle was seventeen and Matt was twenty.. After three years of dating, they were married in June of 2008 with the promise that their love would survive whatever their lives had in store. Neither was certain about the trajectory of the life they shared, but both agreed on one thing: they wanted a big family.

“I’ve always wanted a full house,” Danielle said. “We both come from a family of five.”

So, after three years of marriage and difficulty with infertility because of Polycystic Ovary Syndrome, doctors put Danielle on Clomid and she had her first child, Brody – a healthy baby boy. Life was good, but Danielle and Matt always wanted a large family, so two years later, they decided to try again.

This time, it was harder. Again, Danielle took Clomid to help with conception. Shortly after she found out she was pregnant, she suffered a miscarriage. They waited six months, tried again, and this time, she had a molar pregnancy.

“We tried the medicine again, it failed, and they referred us to an infertility specialist,” Danielle said. “The third time was the charm, and that’s when we got pregnant with Harlow.”

Yet this pregnancy was anything but easy, and as it progressed, it became even more concerning.

“At 33 weeks, they found fluid on Harlow’s abdomen,” Danielle said.

Since the risk of invasive testing was far more significant than the reward, they opted to monitor her condition and avoid the more challenging procedures.

“Her fluid shrunk to a thin visible line, so they released her and ruled it as a viral infection,” Danielle explained. Although they had released her from the hospital, this was still a concerning time.

Danielle was diagnosed with hypertension and gestational diabetes, so they found it best to induce at 37 weeks – and so begins the story of Harlow Grayce, the baby that changed their lives forever.

When Harlow was born, she was seemingly healthy. However, Illinois state law mandates that hearing testing must be completed promptly after birth.

“She failed it three times,” Danielle said. This was confirmed at Children’s, where they said she has moderate to severe hearing loss and equipped her with a hearing aid.

For Harlow, things just didn’t seem easy. As the days became weeks and slipped by, Matt and Danielle became concerned that she was missing some developmental milestones, even though she’d been in developmental therapy and hearing developmental therapy through early interventions since she was two months old. They decided to have PCWSN.com

Volume 1: Issue 5 / Parenting Children with Special Needs 13

her evaluated for physical and occupational therapy, too – which they found she made a good candidate for. Yet this did not eliminate their concerns, and as her first birthday came and went, Harlow was still missing those developmental milestones.

“At one year, we did an MRI and [it] showed that she has weak myelination in the brain, also known as poor connections,” Danielle said.

Essentially, she said those connections Harlow struggled with were responsible for her reflexes and made daily living more challenging.

“Instead of our quick, natural response, it takes longer to process how to respond to a reaction than a natural reflex,” Danielle explained.

The difficult diagnoses kept coming.

Doctors told Matt and Danielle their daughter had profound intellectual disability. They said she would need special assistance for the remainder of her life. She saw an endocrinologist for hypothyroidism and was diagnosed with hypotonia, very weak trunk and poor head control. Even after 22 months of life, they still do not know what the future holds for her.

“We had a hard time with the neurologist trying to figure everything out,” Danielle said. “The only thing [he] told us is that she has profound intellectual disabilities, and they didn’t really specify. They didn’t give us any hope for anything.”

This uncertainty led them to genetic test, although the results in this case were also a mixed-bag.

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“They want to do another test, [but] they did basic testing and found out that she has one abnormal X-chromosome 20,” Danielle said.

It is hard to say what this means, but their hope is that genetic testing in the future will give them some needed answers. In the meantime, they just do the best they can, taking in stride all the ways Harlow has changed them as a family.

“We notice that you have to take things dayby-day. I am one that likes to plan ahead and I can’t do that with her,” Danielle said.

“She knows how to slow things down and enjoy things at the moment.”

In addition, her struggle with meeting developmental milestones has made each bit of progress that much more important.

“We learned not to take anything for granted,” PCWSN.com

Danielle said. “Every little thing that she does – her little slogan is ‘one inch-stone at a time – and we know that [we’re] definitely taking an inch-stone at a time for her.”

years. However, her source of optimism is never far away, and she calls on him daily for the support and encouragement he willingly and lovingly provides.

Because of this, they savor the small things: an eye surgery that enables her to track happenings in the room and a developing ability to turn her head for voices.

“My husband’s a goof,” Danielle said.

“Her little things are like big steps for us,” Danielle said. They celebrate each and every one of them to the best of their ability.

Even still, having a life filled with so much uncertainty has created its own challenges for the pair – challenges they work hard at overcoming.

“Stress has taken a huge toll on both our lives,” Danielle said, referring to the physical, emotional, and financial strain they’ve experienced in the past couple of PCWSN.com

He’s also a hard worker, although he rarely takes credit for it. He works 50 plus hours a week and then does side work on top of it, whatever is necessary to make ends meet.

Danielle works, too, and has for ten years as a waitress in Waterloo. When they aren’t working, they are caring for Harlow, but what they’ve learned recently is that they also have to be vigilant about caring for themselves. “[Life] has been playing a toll on our relationship. I hear that it’s hard on any family with kids,” Danielle said. “We’ve learned that we’ve got to make time for ourselves. Our family has been a great help [with that].”

On days they do slip away, you might find them on a motorcycle – reconnecting in the same way they did when they first met.

“There are people I’ve talked to at [work], my customers, who say that 90% of relationships with a special-needs child end in a divorce,” Danielle said. “It makes me paranoid, because I don’t want to be one of those statistics.”

So, they do their best to work as a team.

They go on motorcycle rides, give each other breaks, tag-team parenting, and cling tightly to each other when things feel too overwhelming to handle alone.

Although no one really knows what the future holds for Harlow, one thing remains certain: they will arrive at that future together, just as they always have – and it will be glorious.

Volume 1: Issue 5 / Parenting Children with Special Needs 15

HEALTHY

Living

Arthrogryposis

A

By the Pediatric Orthopaedic Specialists at Shriners Hospitals for Children

rthrogryposis is a number of rare, nonprogressive muscle disorders causing stiff joints and abnormal development of muscles. From the Greek word meaning “curved joint,” children with arthrogryposis are born with a limited range of joint motion.

Types of arthrogryposis

Amyoplasia – The most common type of arthrogryposis is an overall lack of muscular development and growth with contracture, a loss of joint motion and deformity of most joints. Babies diagnosed

with amyoplasia have dense fibrous tissue and fat instead of skeletal muscle.

muscle weakness which contributes to the limited movement.

Distal arthrogryposis – This type affects only several joints, usually in the hands and feet, and range of motion may be mildly limited.

Syndromic arthrogryposis – This type affects the internal organs, as well as the muscle and joint systems. Internal organ involvement can include breathing problems, feeding problems, possible speech disorders and in some cases, mental retardation.

Classic arthrogryposis – This type usually affects the hands, wrists, elbows, shoulders, hips, feet and knees in varying degrees of severity. The most severe can affect almost every body joint, including the back and jaw. Joint contractures, or loss of joint motion, is frequently accompanied by

16 Parenting Children with Special Needs / Volume 1: Issue 5

Some factors that can limit joint movement before birth include: • Improperly or incorrectly developed muscles

PCWSN.com

• Limited room in the uterus for normal movement • Improper formation of the central nervous system and spinal cord

Some infants diagnosed with arthrogryposis may have facial deformities, curvature of the spine, genital deformities, cardiac and respiratory problems and skin defects.

• Abnormal development of the muscles, tendons, bones or joints

Diagnosing arthrogryposis

• Genetic, the condition is passed from parent to child

There are several ways to diagnose arthrogryposis:

Signs of arthrogryposis

Blood tests – A simple blood test can detect if a newborn has arthrogryposis.

The specific joint contractures in infants vary, but there are several common characteristics that include:

X-rays – In many cases, X-rays are taken to confirm an arthrogryposis diagnosis and to evaluate stiff or dislocated joints.

• A child’s arms and legs are affected, with the most deformity in the wrists and ankles

Muscle biopsies – Another method to diagnose arthrogryposis is to take a muscle sample where any joint deformity can be detected.

• Arm and leg joints may not be able to move • Arm and leg muscles are thin and sometimes absent • A newborn’s hips may be dislocated

the improvement of the range of motion of the affected joints. In addition, patients may need: Splints – Splints are made to increase the stretching exercises and increase the range of motion. Casting is frequently done to improve foot position. Removable splints can be used on knees and feet to allow exercises, but some patients experience significant results by wearing splints at night.

Surgery – Some children may require surgery to address any deformities that the child may have been born with and can include elbows, feet, hips, knees and wrists.

Surgery is generally recommended if more range of motion is needed after therapy has achieved maximum results.

If you know a child who may have these symptoms, call 1-800-850-2960 to schedule an appointment today!

Evaluation and treatment of arthrogryposis For most types of arthrogryposis, a rigorous treatment of physical and occupational therapy can be successful in

Call Today!

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

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Volume 1: Issue 5 / Parenting Children with Special Needs 17

Bedtime and Morning Routines: The Basics

By Emily Goodwin MD

B

edtime and wake up time can be stressful. Developing a consistent routine can smooth the process. Determine your ideal bedtime and wake up time for your child and family to ensure your child(ren) catch enough zzz’s. The American Academy of Pediatrics (AAP) endorsed the American Academy of Sleep Medicine’s guideline of recommended sleep per 24 hour period: • Infants 4 months to 12 months should sleep 12 to 16 hours (including naps) • Children 1 to 2 years of age should sleep 11 to 14 hours (including naps)

18 Parenting Children with Special Needs / Volume 1: Issue 5

• Children 3 to 5 years of age should sleep 10 to 13 hours (including naps) • Children 6 to 12 years of age should sleep 9 to 12 hours • Teenagers 13 to 18 years of age should sleep 8 to 10 hours Consider having the same bed and wake times even on weekends as to not throw off their sleep schedule (don’t even get me started on daylight savings!). If it is a new routine, add some extra time as a buffer for the morning until it becomes habit. Routines that are predictable and applied consistently help your child(ren) know what to expect.

BEDTIME

AAP healthychildren.org has several tips including considering the “The 4 B’s of Bedtime” including Bathing, Brushing, Books, Bedtime. Baths can be soothing and act as a cue to your child that it is time to calm down and start the bedtime routine. If you don’t bathe your child every night, even just washing your child’s face can act as this cue. Next give night-time medications or treatments if applicable that have to occur before bed followed by brushing teeth. Next is reading! The library is an excellent source of physical books (which I encourage if possible) as well as electronic and audio versions. Avoid use of bright lights and screens including TVs before or during bedtime as much as possible as they can be very stimulating to young minds and interfere with sleep. You may even have to have a place they go to charge outside of the bedroom to avoid tempting your child. Sharing books and stories, especially those with pictures, helps language development and is a great way to interact with and give your child individual attention before

Some children with special needs have difficulty sleeping and may need medication to help them sleep at night. bedtime. Some children (like mine) will try to drag out bedtime.

When possible, keep the routine to about 30 minutes or less. Offer (limited) choices when you can to help your child feel in control (pick out a book from a few options for example). With children over age one, it is ok to have a comfort object (favorite blanket or stuffed animal without choking hazards such as ribbons, buttons etc.) Using visual cues or a visual schedule or song can also help prompt your child to know what is next, instead of you nagging. If able, gradually over time your child can become more in charge of the bedtime routine.

No matter what your home’s arrangement or the developmental level and age of your child, it is a critical skill for your child to learn to fall asleep independently (even if room sharing) without the need for rocking or feeding or you. If your child cannot safely sleep in a typical bed for their age and size due to fall risk for example, talk to your child’s health care provider to see if your child may benefit from a safety bed or rails. Depending on your child’s medical needs, he or she may also need an awake caregiver at night (if your child has a tracheostomy or ventilator for example). If this is the case, it is super important that that night time is for rest and sleeping and not playtime (even if medications, treatments, diaper changes or toilet breaks have to occur at night). In order to facilitate that, if your child wakes, be as boring as possible. If they need you, address the need, and your child should go immediately back to bed. Playing may inadvertently entice your child to want to stay awake at night instead of sleeping. The same goes if your child wakes and wants you. Ensure there is not a physiologic need and reassure them but be as boring as possible. If you know they are safe and are just wanting your attention, it is okay to wait a little to see if they will fall asleep. Video and/or audio monitors can help you check on your child without physically going in the room.

Some children with special needs have difficulty sleeping and may need medication to help them sleep at night. Additionally, if your child snores, they may need to be evaluated for sleep related breathing disorders (sleep apnea). Talk with your child’s health professional if your child has trouble sleeping despite following a routine or if snoring is present.

Think about the most hectic parts of your mornings. Incorporate some of the morning needs into the evening routine. Gather the morning essentials including picking out clothes for the morning, packing meals, medications and supplies, etc. Consider engaging your child in this process when able.

MORNING

Consider cues to help your child know it is time to wake up (alarm clock, turning back covers, turning on lights or opening curtains/ blinds or even “time to wake” light clocks). You can again use a visual schedule (bathroom, brush teeth, get dressed, breakfast). If you have to drop your child off and say goodbye whether at the bus stop, daycare, school or with another caregiver, have a process for saying goodbye. Like bedtime, some children (mine) try to drag out the goodbye. Just as having the 4 B’s can be cues for sleeping, have a routine for goodbye time. When possible, involve your child in the process and you can even practice. Make up a special wave, handshake or phrase that signals you are leaving now, but will see them again soon.

Above all, please remember that bedtime and morning routine struggles are a rite of passage for all parents. Once you think you have it figured out, changes in life (developmental changes, storm outside, illness, hospitalization, daylight savings, travel, a new sibling, changes to school or work schedules, etc.) will mean you may have to adapt the routine. The key is that you have one for your family.

References:

Laura A. Jana, MD, FAAP and Jennifer Shu, MD, FAAP. The 4 B’s of Bedtime from Food Fights, 2nd Edition (American Academy of Pediatrics) https://www.healthychildren.org/English/healthy-living/sleep/Pages/The4-Bs-of-Bedtime.aspx. Accessed March 30, 2019.

American Academy of Pediatrics. Bedtime Routines for School-Aged Children. From Sleep: What Every Parent Needs to Know. https://www. healthychildren.org/English/healthy-living/sleep/Pages/Bedtime-Routinesfor-School-Aged-Children.aspx. Accessed March 30 2019.

American Academy of Pediatrics The importance of Family routines.

From Caring for your school-age child: ages 5 to 12.. https://www. healthychildren.org/English/family-life/family-dynamics/Pages/TheImportance-of-Family-Routines.aspx. Accessed March 30 2019.

Healthy Sleep Habits: How many hours does my child need? American Academy of Pediatrics https://www.healthychildren.org/English/healthyliving/sleep/Pages/Healthy-Sleep-Habits-How-Many-Hours-Does-YourChild-Need.aspx Accessed March 31 2019.

Emily Goodwin MD, FAAP provides primary care for children with special health care needs. She is a board certified pediatrician at Children’s Mercy in the Beacon program, a family-centered medical home for children with medical complexity and their siblings. She has an interest in education for both families and medical trainees.

19

INDEPENDENT

By Kari Wiss

Living

Employing the Gentle Teaching Model in services for adults with special needs

S

upporting adults having developmental disabilities within our day program comes with a variety of challenges.

Each person is unique, and requires complete attention to detail in order to support his or her ever changing needs.

But the basis of how to support people with their needs is where Gentle Teaching comes into play.

Safe and Loved. Those two words are the foundation of Gentle Teaching and where it all begins. Gentle Teaching is all about helping people to feel safe and loved, not just be safe and loved. We understand that many of the individuals we support are physically ‘safe’ in their everyday lives…they have enough to eat, receive their medications, have a safe place to be during the day. But feeling safe 20 Parenting Children with Special Needs / Volume 1: Issue 3

is very different. In order to help someone to feel safe, we must develop a relationship built on trust and kindness. Developing a culture of gentleness is the foundation of our services at DPI. Dr. John McGee, the founder of Gentle Teaching, based all of his teachings on helping people to feel safe, loved, loving and engaged with tools we carry with us each and every day…our eyes, hands, words and presence.

• Eyes—some say our eyes are our windows to our soul. Eyes can share kindness and compassion, they can also show when we are hurting or sad. Our goal as Gentle Teachers is to use our eyes to express warmth and gentleness.

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• Hands—sometimes when people don’t understand the words we say, or can’t see our inflection in our eyes, they can feel a pat on the shoulder, or the warmth from being wrapped in a hug. Touch is a very important communication tool we use at DPI in order to help people feel safe and loved.

• Words—our words should be uplifting and encouraging; however, it’s not just what we say, but how we say it. The inflections in our voice and our intended meaning behind the words are equally important. Being mindful of our words can go a long, long way.

• Presence—there are people who when they enter a room suck the energy right out of the air. And then there are people who are warm and inviting; people others want to be with. A culture of gentleness teaches us that to be with us is good, to be with others is good, and to All people crave companionship and a sense of belonging. Our goal at DPI is to help each person feel safe, loved, connected and engaged through supports provided in a culture of gentleness.

To learn more about Gentle Teaching, please visit https:// gentleteaching.com.

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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Volume 1: Issue 5 / Parenting Children with Special Needs 21

Nature for all

Therapy

How experiences in the great outdoors are helping St. Louis families with special needs thrive, connect, and grow

By Sheila Voss, Courtesy of Missouri Botanical Garden

T

here is a Zen saying, “You should sit in nature for 20 minutes a day…unless you’re busy. Then you should sit for an hour.” Far from just a feel-good adage, this prescription is rooted in science and data. A growing body of research from multiple disciplines points to the restorative powers of nature to human health and well-being. At a time when so many of us are time-strapped, digitally addicted, and overwhelmed, quality time in nature-rich environments can be the salve we desperately need. For families with children who have special needs, time together in the outdoors can have even deeper impacts, enabling families to thrive, connect, and grow in personally relevant, meaningful ways. Here are a few of our favorite examples:

Thrive

Some days are harder than others, right? For children with different abilities and needs, some days are harder than most can imagine. Making it harder is the reality that these families often feel marginalized, not able to give their kids all the enriching experiences that others so freely and easily get to experience. Nature can be the great equalizer. In nature, all kids can breathe in fresh, clean air and feel the cool breeze while resting under a shady tree.

Nature is one ginormous sensory adventure, offering up something for everyone – birdsong and frog calls, sweet ripe wild berries, cool grass underneath our feet, the earthy smells of soil in our hands, the vibrant colors of wildflowers in bloom.

22 Parenting Children with Special Needs / Volume 1: Issue 5

In nature, kids of all abilities can thrive. Studies point to increased abilities of children to focus in better and longer ways in outdoor settings. Open-ended, unstructured play in nature, whether on their own, with family members, or with groups of other youth can spark the imagination and help build social skills. In addition, when encountering the all the animals and plants that live in woodlands, ponds, creeks, and gardens, children respond with their natural instincts of empathy. In nature, kids have countless opportunities to demonstrate patience, nurturing, and caring for someone or something other than themselves – all traits needed more in the world.

The medical community in St. Louis also understands how spending time outdoors impacts human health, wellbeing, and recovery. Locally, more hospitals are adding healing gardens, therapeutic gardens, and nature-rich green spaces for kids and families to get outside during their hospital stay. Research shows patients heal faster when exposed to natural environments, even simply to views of nature from their hospital room.

Connect

When families with special needs journey out into the community, it can feel intimidating and incredibly stressful. Across St. Louis, cultural institutions and public destinations are increasingly investing in strategies that ensure their places and programs welcome people of all ages, backgrounds, and abilities.

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At Missouri Botanical Garden, several intentional strategies help create a more inclusive environment. Front-line staff are trained on inclusion and accessibility best practices, each person equipped with tools and tactics to enable meaningful experiences for all visitors. In the Children’s Garden, staff developed a visual schedule and child’s guide to help families prepare their children prior to visiting this popular nature play space. The Nature Explore Classroom features musical instruments accessible at multiple heights with a variety of tones, raised beds with sensory plants, and a natural materials art table with different tactile materials. Nearby, an indoor Calming Corner provides a perfect space for families who need a chance to step away from the excitement. Elsewhere in the Garden, visitors can enjoy the Zimmerman Sensory Garden, a vibrant outdoor space filled with multi-sensory plants, engaging smells, and fun textures, complete with braille and raised-letter signage. On select nights throughout the year, the Garden also plays host to community groups like Easterseals Midwest or St. Louis Crisis Nursery who come for special, customized Family Nights designed just for them and the families they serve. Among the many benefits of these Family Nights is the opportunity for parents and children to connect with other families with similar abilities, expanding their social network and sense of community.

Grow

Momentum is growing across the St. Louis region. The inclusive playground movement is becoming more and more the norm in city parks and schoolyards. Not only are new playgrounds-for-

Family-Friendly

Fun!

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all popping up, but many cities and school districts are investing in renovations and retrofits to existing spaces, a testament to the priority they place on inclusion. More energizing proof can be found in the growing coalitions forming, from the St. Louis Arts & Culture Accessibility Collaborative to the St. Louis Zoo Museum District Accessibility Working Group made up of staff from the Missouri Botanical Garden, Missouri History Museum, Saint Louis Art Museum, Saint Louis Science Center, and Saint Louis Zoo. Even niche experiences, like the Canopy Climb experience led by Vertical Voyages offers adapted programs to meet people’s special needs.

Finally, personal growth. Personal growth in the great outdoors can take many forms. When immersed in nature, kids and families can feel part of something bigger than themselves. They can experience awe and wonder. Their hearts and minds can be touched by the living world in ways that calm their spirit, spark their curiosity, and re-energize them for the next day, the next challenge, the next adventure. This is where nature’s true brilliance shines. So cheers to every family! Let’s get outside!

Sheila Voss is a St. Louis-based environmental educator and lover of mossy rocks, old trees, tiny mushrooms, and birdsong. She leads the education programs at Missouri Botanical Garden, collaborating with local and global organizations to advance biodiversity conservation in science-driven, community-based, and citizen-activated ways.

Missouri Botanical Garden (314) 577-5100 | mobot.org Sophia M. Sachs Butterfly House (314) 577-0888 | butterflyhouse.org Shaw Nature Reserve (314) 577-09555 | shawnature.org

Volume 1: Issue 5 / Parenting Children with Special Needs 23

Making Memorable Vacations & Meeting Special Needs

By Lindsay Devers

F

amily vacations can be more stressful than the travel itself, especially when you have a child who needs some additional support. With some advance planning, creative thinking and team effort, you can smooth out many of your worries and enjoy the prospective of making fun vacation memories this summer.

Along with handling the vacation logistics – booking a hotel or camping spot, renting a car and buying airplane or amusement park tickets – you also need a game plan to handle any emotional, behavioral and social issues that can threaten to derail the vacation.

According to Carrie Campbell, coordinator for Great Circle’s Incredible Years program, planning that incorporates flexibility and the child’s point of view can help everyone enjoy the positive family moments and avoid worrying about what might go wrong.

Campbell says, “It’s important to honestly assess how your family’s special needs or issues can impact the length of the vacation, what or how much you can do, and everyone’s tolerance for ‘the unexpected,’ and then build a vacation that matches.”

Vacations take us out of our routine, which can stress out everyone in the family. No matter our age, most of us value a routine

to guide our daily living. For children with special needs, especially those with an autism spectrum diagnosis or other communications or social disorders, a routine helps smooth out life’s daily bumps.

• Enlist siblings’ help. Siblings generally know the warning signs of discomfort or agitation in their brother or sister. They can be a valuable support during vacations to calm things down or be an extra set of hands to help.

So how do you create a vacation and a routine that serves all family members well?

Here are some tips.

“Focus on how you can work together as a family unit to support each other,” says Campbell. “But remember, the siblings also deserve some special times to just have fun and make special vacation memories.”

Before your trip:

• Encourage your child to express his/ herself about the vacation and participate in the planning. Does she have any concerns or questions? Make sure he feels heard and understood. Have her help develop the vacation routine, which increases buy-in and control of her environment. If it won’t add to the stress, talk about the changes in routine a few times beforehand or try practicing while still at home. Keep as much of the routine (bedtimes, naptimes, mealtimes, comfort items, etc.) as possible to avoid meltdowns.

Involving your child with the packing also increases buy-in. One helpful tip is to organize each person’s clothing by days – shirt, pants/skirt, underwear and socks – in separate Ziploc bags. And whether you’re traveling by car or plane, make sure all clothing is comfortable.

Involving your child in the decision-making about what clothes or comfort items to pack for a trip helps her feel more control of her environment, especially if she’s uncomfortable with changes in routine.

24 Parenting Children with Special Needs / Volume 1: Issue 5

• Arrange signs to help your child express his feelings. Sometimes, kids are reluctant to say they’re uncomfortable or unhappy, especially in front of others. So, choose an appropriate object or signal and give it meaning. For example, you may tell the child, “If you’re feeling upset while we’re on vacation, hand me the red crayon, and I’ll know you need a break.”

• Plan smartly around predictable issues.

If someone in the family has trouble going to sleep with unfamiliar sounds or too much stimulation, don’t forget to bring soft earplugs. Consider booking your hotel room away from the lobby, elevator, swimming pool or restaurant. And don’t forget to pack some familiar objects, such as a blanket or stuffed animal, for comfort and continuity.

“Discuss behavioral expectations in public places, such as hotels and restaurants,” says

Discuss ahead of time what behaviors aren’t allowed on the vacation – and be prepared to stick to your guns. In close quarters, such as a car’s backseat or airplane seat, de-escalation works much better than yelling or anger.

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Campbell. “All adults need to be ‘on the same page’ with discipline and responses to behavior. And practice de-escalation, because yelling only makes backseat arguments worse.”

During your trip:

• Bring fun activities and comforts of home. Favorite games, books, blanket or pillow can help calm a child headed toward a meltdown. This is a good time to enlist the help of a sibling. Bring headphones so the child can listen to music or a movie without the distraction of plane or road noise.

• Make meals and rest breaks consistent.

Try to keep foods and snacks familiar.

If possible, bring “extras” of favorite foods, as a reward for positive behavior or to supplement at mealtime. Enjoy the occasional vacation treat, but smartly.

Consider splitting the treat to minimize sugar overload. And remember – every family member should abide by the same treat-sharing rules! Consistent naptimes are essential, and don’t forget to adjust if you’re in a different time zone.

• Stop at points of interest that fuel imagination. Plan some time to visit family-friendly museums or other kidappropriate activities. Many attractions have added sensory-friendly spaces and experiences especially for children with autism, so take advantage of them. If you’re driving through a town, look for a park or playground. It’s a brief stop that can be a spontaneous moment for parents to relax and the kids to release some energy!

• Remember to relax. Vacations are about togetherness, not perfection. “Maybe the car trip takes six hours instead of five or

Up in the Air

Flying with children, especially those with special needs, can present certain challenges. Fortunately, there are ways to smooth out the ups and downs normally associated with air travel.

Use role playing and teaching stories to familiarize your child with the airport experience – the security process, boarding, and sights and sounds of takeoff and landing.

Allow kids to choose their favorite books or toys to pack into his bag. He’ll feel calmer and more in control.

Keep the environment calm by bringing ear plugs, noise-cancelling headphones or MP3 players to help kids deal with the unfamiliar noises of air travel.

Ask for airport guest services help to assist with advance boarding times, special meals, rental equipment and pre-registration of emotional support animals.

Use TSA Cares, the Transportation Security Administration’s helpline to assist travelers with disabilities, medical conditions or special needs. Visit tsa.gov/travel/ special-procedures to learn more. the water park wasn’t as much fun because it was a cloudy day,” says Campbell.

“Focus on the time spent doing something together – that’s the memory everyone wants from vacation.”

After your trip:

• Encourage kids to keep a trip journal.

It can help them remember important landmarks or an activity and become a treasured memento for years to come.

• Have your kids retell their vacation stories to other family members or friends. You’ll probably be surprised to hear what was most memorable about the trip from your child’s perspective. You’re also nurturing her communication skills and giving him a head start on that “what I did on my summer vacation” essay!

Vacations are most memorable when everyone works together as family unit to support each other.

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Final advice

Children’s responses to situations often are influenced by the behavior of adults around them, especially in unfamiliar surroundings.

Campbell encourages parents to check their own emotions and actions during a vacation to keep things on an even path.

If you need extra support, Great Circle offers a variety of programs and counseling services to equip parents with the tools they need to be successful both at home and on vacation.

Visit www.greatcircle.org to learn more.

With more than 20 years’ experience in the behavioral health field, Lindsay Devers is a licensed professional counselor overseeing Great Circle’s community counseling centers across Missouri. She vacations at least twice a year with her two adolescent children.

Long car rides don’t offer much opportunity to release energy. So, consider a spontaneous stop at the local playground when you’re passing through a town. It’s a great way for parents to relax and the kids to release some energy!

Volume 1: Issue 5 / Parenting Children with Special Needs 25

PRACTICAL

Matters

By CommunityAmerica Insurance Agency, Guest Contributor

How Does Insurance Work?

Used with Permission Courtesy of Community America Credit Union

I

nsurance, at its most basic, is an investment in a future risk that may or may not happen.

When you take out an insurance policy, you are making an agreement with the insurance company that you will pay premiums and in exchange, the insurance company will take care of you in the event of a claim. Policies determine the criteria for what is covered, for how much, and all the details in between.

The policy states the value of the insurance— for instance, you could be covered for up to $10,000 worth of flood damage. But the premium is the cost—for example, each month, you will pay the insurance agency $10 as your end of the flood damage coverage. A premium is calculated based on factors like the specific type of risk and your likelihood to make a claim. Meaning, the premiums for flood insurance would be pretty different for a person that lives at the bottom of a flood plain versus one who lives at the top of a hill.

Monthly premiums are paid by you and all the other insurance clients. Carriers create a large pool of money and when a client files a claim, the money awarded to cover the damages of that claim come from the premium pool.

So why bother to go through insurance instead of a savings account or using your out of pocket money, if your risk factor is low?

The financial difference between having and not having insurance is substantial, even if you have emergency savings. For example, if there is a house fire that burns down a home, without insurance that homeowner would not only be responsible for replacing their stuff and finding a new home entirely out of pocket—they’d still be responsible to pay off the house that burned down.

However, with a homeowners policy, that same homeowner will pay their deductible and that’s it. Everything else is taken care of. Suddenly that low monthly payment and several thousand dollar deductible cost don’t seem like much—not compared to two mortgages and replacing everything you own!

26 Parenting Children with Special Needs / Volume 1: Issue 5

The moral of the story is this: Even if you believe you are low risk for an insurance claim, there’s still a chance you’ll have to pay for reparations that savings would have a hard time covering. Both in the amount of money and time invested towards self-insuring through a savings account, insurance becomes a no-brainer because, among other reasons, you can get the full amount of funds when you need them—instead of saving and hoping you can hold off emergencies until you have enough money to cover it. Insurance companies are able to manage this because they pool premiums from many policyholders together and know that each policyholder will not have the same claim and may not have any claim at all.

Policyholders get piece of mind, insurance carriers can spread their risk.

If you have questions about how to make sure you’re covered, contact your CommunityAmerica insurance advisor.

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ResourceGuide

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P a re n t i ng C hi ld re n w i t h S p e c i a l N e e d s

St. Louis / Volume 1 :

NATURE FOR ALL:

How experiences in the great outdoors are helping families with special needs thrive, connect, and grow

ALL ABOUT POOP: CONSTIPATION NEED-TO-KNOWS

doctorspracticinglaw.com

STL’s Pediatric Healt

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 Gateway Asthma and Allergy Relief • 618.277.1413 or 314.421.0663 • www.asthma-allergyrelief.com

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“One InchStone at a Time” The Leedle Family Story

SPONSORED BY

Adults with Disabilities

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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

$WWHQWLRQ 'HƓFLW 'LVRUGHU &KLOGUHQ DQG $GXOWV ZLWK $WWHQWLRQ 'HƓFLW 'LVRUGHU (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 Great Circle Provides educational (K-12) and in-home/in-facility respite services, and 24/7 residential care for ages 6-21. Highly trained therapists use behavior analysis (ABA), provide developmental/social and life skills/occupational training, psychiatric care, and parent education and supports.

• Greatcircle.org • 844.424.3577 (GCHELPS) Judevine Center for Autism Services to people with autism, including therapy, residential care, education, family support.

• 1.800.780.6545 • www.judevine.org

MAKING MEMORABLE VACATIONS AND MEETING SPECIAL NEEDS h and Services Resou rce Guide

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

• braintumor.org • 617.924.9997

Volume 1: Issue 5 / Parenting Children with Special Needs 27

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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 (CP) Center at St. Louis Children’s Hospital The CP Center at St. Louis Children’s Hospital helps children with cerebral palsy achieve maximum physical, intellectual and emotional development.

Sports programs and Camp Independence offer fun ways to grow and develop throughout the year!

• 314.454.KIDS (5437) • 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

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 St. Louis Children’s Hospital Cleft Palate and Craniofacial Institute The largest and oldest center of its kind in the Midwest. The team has treated more than 4,000 patients with cleft lip and palate, and another 2,800 with major craniofacial anomalies.

• 314.454.KIDS (5437) • www. StLouisChildrens.org

Cystic Fibrosis

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

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 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

Diabetes

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 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 Down Syndrome Center at St. Louis Children’s Hospital At the Down Syndrome Center, our goal is to help children reach his or her full potential. Our center focuses on each child’s medical, developmental and psychological needs. We care for patients before birth through age 21. Families with a prenatal diagnosis are welcome to visit the Center before birth.

• 314.454.KIDS (5437) • www.StLouisChildrens.org

28 Parenting Children with Special Needs / Volume 1: Issue 5

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 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 Great Circle Provides accredited K-12 education for children with emotional/behavioral challenges, communications disorders, autism spectrum diagnosis, and Missouri’s only high school program for teens in substance use recovery. Each classroom blends academics and therapeutic services to help children who struggle in a traditional classroom setting.

• Greatcircle.org • 844.424.3577 (GCHELPS) 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.

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

Epilepsy

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

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See ad pages 7 & 11 Epilepsy Center at St. Louis Children’s Hospital A Level 4 epilepsy center, Children’s Hospital has the expertise and technology to provide the highest-level medical and surgical evaluation and treatment for patients with complex epilepsy.

• 314.454.KIDS (5437) • www.StLouisChildrens.org 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

Fragile X

Fragile X Resource Center of Missouri Provides support and information to individuals with FXS and their families. • www.fragilex.org/ community/community-support-network/southwest/fragile-x-resource-center-of-missouri/

General

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 Great Circle Offers a wide spectrum of behavioral health services for children and families who are facing difficult life challenges. Programs include accredited K-12 education with therapeutic services, 24/7 care, intensive outpatient therapies and community counseling services, and in-home/community-based programs to strengthen families and reduce at-risk behaviors.

• Greatcircle.org • 844.424.3577 (GCHELPS) Kids Enjoy Exercise Now (KEEN) Provides free one-to-one recreational opportunities for children and young adults with mental and

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physical disabilities. • 314.259.5980 • www.keenstlouis.org 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 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 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 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 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 Children’s Hospital Center for Families (formerly Family Resource Center) The Family Resource Center (FRC) provides free resources about a child’s specific illness, diagnosis or developmental stage. Staffed by pediatric nurses and librarians, the FRC creates customized health information packets for families. The FRC is 100% funded by generous donors to the St. Louis Children’s Hospital Foundation. • 314.454.2350 • www.StLouisChildrens.org/FRC St. Louis Public Library Provides parents and children with support through storytimes, sensory play activities, books, toys, resources and more. Visit slpl.org for more information.

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

Volume 1: Issue 5 / Parenting Children with Special Needs 29

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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

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

Spina Bifida

Learning Disabilities

Tourette Syndrome

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 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

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 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

Multiple Sclerosis

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

Muscular Dystrophy

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/

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 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

30 Parenting Children with Special Needs / Volume 1: Issue 5

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

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Volume 1: Issue 5 / Parenting Children with Special Needs 31

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