Pcwsn magazine 2016 issue 5

Parenting

FREE

Volume 7 : Issue 5 / PCWSN.com

Children with Special Needs

Small

, That s All

OCTOBER

Brachial Plexus and Dwarfism Awareness

Internet Research: Proceed with Caution

Start at Home

KC’s Only Pediatric Health and Services Resource Guide

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PUBLISHER’S

Letter

Bad Rap?

M

It’s ok to be an imperfect parent oms and Dads, first and foremost, I want you to know that you are normal, awesome, and incredible! Got it? Yes, there are going to be days where we’re ready to throw in the towel and walk away. But we can’t. Because we’re the parents and someone has to be there.

I just went to go see a very adult movie, Bad Moms, and I laughed so hard! The characters in the movie are stressed-out moms dealing with everyday trials of parenting and an unrealistic ideal of what being a good mom is supposed to be. In the movie, they call it quits on parenting for a few wild days. As I watched this movie, I kept thinking, what would the characters do if they were a parent of a child with special needs?

That got me thinking about the typical situations we, in the real world, often find ourselves in. How did you respond? Got any you want to share? Join the conversation on Facebook.

1.

2.

3.

When you are informed that the doctor has no available appointments for six months. YOU refuse to take “no” for an answer and get in within two weeks.

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.

Already, we have more than 10,500 fans (and STILL growing) who have joined us – find out what they are saying and join the conversation!

When your beautiful child is having a completely incomprehensible conversation with you. YOU nod and pretend to understand, just because you’re enjoying the moment.

When your child melts down in a restaurant, mall, movie, etc. YOU shoot the death glare at the people around you, which says more than words, “I don’t have time to explain this to you, but now is not the time to stare buddy!”

4.

5.

When potty training fails, YOU resolve, once again, to start trying again next week. Or the week after.

Or after his birthday...

When dealing with insurance coverage, that never seems to cover anything you need. YOU lose it with the representative, screeching into the phone, “I HOPE YOU NEVER HAVE A CHILD WITH SPECIAL NEEDS!!!”

6.

7.

8.

9.

10.

Despite the joy it gives your child, when the therapeutic toy that plays the world’s most annoying music is on your last nerve. YOU hide the dang thing for a few days.

When you need some alone time. YOU hide in the bathroom with magazines or your child’s IPad just for a second of peace.

When you look at your calendar, and realize today is another IEP meeting. YOU briefly consider calling in sick.

When your child’s latest obsession (Chuck E. Cheese, the car wash, etc.) is your torment. YOU lie and tell your child it’s closed, even though it’s not.

When you just need to get out of the house. YOU act like there’s something you need to get at the store, but really you’ve fabricated the whole thing just to get away for a while.

Until next time, Stephanie Myers Publisher and proud mother of a child with special needs 4

Parenting Children with Special Needs / Volume 7: Issue 5

PCWSN.com

Inside THIS ISSUE

FEATURES

8

Knowledge is Power

8

10

Sponsored Feature

The internet is a wonderful resource and often the first place we start when researching a topic. But when it comes to your child’s health, does Dr. Google really know best?

By Dr. Emily Goodwin

10 Short Person Tall World

Teen with achondroplasia dwarfism rises above the crowd to help others celebrate their differences.

By Tracy Bennett

to Recognize October as 14 Missouri Brachial Plexus Awareness Month

14

Brachial plexus injuries occur to an infant at birth due to shoulder dystocia combined with excessive force. Know the risk factors for prevention.

By Virginia Cullan

DEPARTMENTS

18 Learning Social Skills Begins at Home Independent Living

By Judi Mattix

22 Encouraging Kids to Practice Healthy Handwashing Habits Healthy Living

23 Heil Family Receives Grant for Transportation and Lodging Charity Update

18 FRE E

s Sp ec ial Ne ed Ch ild ren wi th

On the Cover: Zack Aubuchon

Small

, That s All

Liz Tilden / Elizabeth Tilden Photography

OCTOBERand

Brachial Plexus ss Dwarfism Awarene

rch: Internet Resea tion Proceed with Cau

KC’s Only Pediatri

c Health and Serv

PCWSN.com

IN EVERY ISSUE

5 / PCWSN.com

Parenting Volume 7 : Issue

Start at Home ices Resource Guid

e

4 Publisher's Letter 25 Resource Guide

Kansas City’s only pediatric health and services Resource Guide for parents of special needs children.

OCTOBER Brachial Plexus and Dwarfism Awareness Month

Volume 7: Issue 5 / Parenting Children with Special Needs

5

Caring for Families Who are Raising Children with Special Needs PCWSN Charity is dedicated to enhancing the quality of life of 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.

Its programs are funded by corporate sponsors, individual donations, and revenues from Parenting Children with Special Needs magazine.

PCWSN Charity is a MO 501(c)3 organization operated by a volunteer board of directors. All funds raised are spent to enhance the families PCWSN Charity supports with its programs.

Upcoming Fundraising Event

Tees for Tots Golf Tournament New Date!

Sunday, October 9, 2016 • 2 pm - 5 pm Topgolf, 10611 Nall Ave., Overland Park, Kan. This annual event will be held at the state-of-the-art Topgolf facility, where prior experience as a golfer is not required. Catering to all skill levels, even non-golfers, opens this important fundraising event up to the whole family.

Volume 7 • Number 5 Publisher Stephanie Myers Stephanie@PCWSN.com Editor Tracy Bennett tbennett@mightymomedia.com Art Director Karla King king409@comcast.net Contact us at 30905 E. Stony Point School Road Grain Valley, MO 64029 816-217-7486 ISSN 2168-1449 Website PCWSN.com Social Media Facebook.com Parenting Children with Special Needs Twitter.com @PCWSpecialneeds Sign up for our e-newsletter to stay current on upcoming events. info@PCWSN.com or sign up on our Facebook page Endorsed by

Watch PCWSN’s Facebook page for updates.

Make a Donation or Become a Corporate Sponsor Contact Stephanie Myers 816-217-7486 or pcwsnkc@gmail.com 6

Parenting Children with Special Needs / Volume 7: 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, contributors, writers, 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.

PCWSN.com

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It is our mission to work with your doctors and your insurance company to provide the equipment, supplies, and training you need so that you can care for your child in your home. We know that the needs of each child are unique and we will tailor our follow-up support to your individual needs, while keeping your out pocket costs in mind.

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Stephanie A. Marx MD Kathyrn Hauptmann MD Melissa J. Beard MD Stephanie R. Bays DO Heather J. Malone MD Kathleen Ballenger PNP

Volume 7: Issue 5 / Parenting Children with Special Needs

7

SPONSORED

Feature

KNOWLEDGE is

POWER

Online research of your child’s health condition requires a dose of caution

By Dr. Emily Goodwin hen a question arises about nearly anything, these days our tendency is to Google it! Maybe you’re comparing prices while shopping or looking for maintenance instructions for your dishwasher. But when it comes to your child’s health, does Dr. Google really know best?

The internet is a wonderful resource and often the first place we start when researching a topic. It is okay and even encouraged to look up health information online. Knowledge can be power. But caution must be exercised.

You cannot believe everything you read online and following advice solely from the internet can be dangerous. In spite of this, using accurate and reliable sources of information on the web can be a great supplement to the guidance you receive from your child’s healthcare provider.

Emily Goodwin, MD, FAAP specializes in caring for children with special health care needs. She is a board certified pediatrician at Children’s Mercy in the Beacon Program, which provides a family-centered primary medical home for children with complex medical needs and their siblings. Dr. Goodwin recently completed her training at Cincinnati Children’s Hospital and Medical Center and has interests in education for both families and medical trainees.

Contact Beacon Program and Clinic: 816-960-8040, beaconprogram@cmh.edu

8

Parenting Children with Special Needs / Volume 7: Issue 5

Research and the evidence

With so much information at your fingertips, where do you start? Your first step should be to seek out information provided by trusted resources. How do you know if a website is one you can trust? Health On the Net Foundation has done some of the work for you! It is a non-profit organization that provides standards for health information online. Start your search at healthonnet.org, which will generate a list of trustworthy websites on the topic you are researching.

As you read about a case or treatment, in addition to considering the source, it is also important to weigh the level of evidence. The lowest levels are expert opinions and case reports, which are often the best information available for rare conditions. The highest level of evidence includes randomized controlled trials or systematic reviews of multiple trials. Medical recommendations and guidelines change regularly based off the latest evidence.

How much research should you do and what kind of questions should you ask? The right amount of research to do is the amount that helps you best understand your child’s condition. Ask questions such as: What is known (about this condition, disease, test, surgery, treatment)? What treatment options, if any, are available? What are the benefits compared to risks? Where is more research needed?

Getting started!

First, remember kids are not little adults so be sure to look for material PCWSN.com

specific to children. Here are some of my top recommendations for general pediatric health topics. These are just a few of the many great websites available. Many of the sites mentioned in this article are available in Spanish and other languages.

Using accurate and reliable sources of information on the web can be a great supplement to the guidance you receive from your child’s healthcare provider.

For information on development, behavior, safety, sleep, nutrition or specific conditions and symptoms, visit kidshealth.org, which includes a section for Parents, Teens and Kids. Healthychildren.org, hosted by the American Academy of Pediatrics, is also a reliable resource.

For vaccine related questions, information on a specific disease, or the latest travel updates and warnings go to the Center for Disease Control and Prevention at cdc.gov.

Your local hospital can be a great place to find answers, too. Websites like Mayo Clinic (mayoclinic.org) provide reliable and updated information.

Some hospitals, including Children’s Mercy, have health libraries for parents and families staffed by medical librarians that can guide you. Local hospitals are also great places to find out about community resources for your child and family.

Every child is unique and so are his or her health needs. When it comes to children with special health care needs, it can be difficult to find information that fits your child’s situation. However, here are a few places I like to look.

Overall, the internet can be a great tool, but it is not a substitute for your child’s team of health care providers. Do not rely exclusively on what you read online from even the most trustworthy sources. Share your questions and search results with your child’s doctors and care team. Sometimes they will know a lot about a given topic. Other times, your doctor will need to look up information and learn with you. Remember, your child’s health care team includes you! You are an expert in your child and your provider is an expert in medicine. Together, you can apply what you have learned to make better and more informed decisions.

For genetic or rare conditions, try Genetic and Rare Diseases Information Center at rarediseases.info.nih.gov, National Organization for Rare Disorders at rarediseases.org, and Genetics Home Reference at ghr.nlm.nih.gov.

Medicine is always evolving. Even if you looked up information about your child’s health in the past, it may be worth searching again periodically to learn the latest updates.

Rare conditions and specific questions

I suggest searching published medical and scientific literature on sites such as PubMed Health at ncbi.nlm.nih.gov/pubmedhealth for a very specific question or topic.

Complementary and alternative medicine

I am often asked about over the counter supplements, herbs, diets or remedies. Generally, I advise sticking to treatments that are well studied or approved by the Food and Drug Administration (FDA). Treatments with FDA approval must undergo very rigorous standards and are generally safe and effective. Many over the counter supplements do not undergo the same standards and therefore it is often difficult to make any recommendations for use without further research. If you are interested in starting a new over the counter treatment, discuss this with your child’s doctor first, in case it may interact with other medications or treatments your child is receiving.

When considering complementary or alternative medicine, here are two trusted resources.

• National Center for Complementary and Integrative Health at: nccih.nih.gov/health/children • For information on drugs, herbs, and supplements, visit MedlinePlus at: medlineplus.gov

Be cautious

When you read about a treatment or cure that sounds too good to be true, it probably is. Sometimes suggestions or remedies stem from well-intended family, friends or social media acquaintances, but they may not be appropriate for your child. Unfortunately, others may try to take advantage of you by offering (expensive) magical tests or treatments that may not be proven and could be potentially harmful. Please read with a critical eye and be cautious before sharing your child’s personal health information online.

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Volume 7: Issue 5 / Parenting Children with Special Needs

9

Short Person

TALL WORLD Teen rises above the crowd to help others celebrate their differences

By Tracy Bennett hy fit in when you were born to stand out?” That’s a quote from Dr. Seuss, which Zach Aubuchon, age 15, uses in a presentation he makes to elementary and middle school students about Achondroplasia Dwarfism. The title of his presentation: “Don’t be afraid to be different.”

“W

Zach’s confidence is contagious. Currently measuring just under four feet tall, Zach says, “I was born to be short. There’s nothing I can do about it. It’s who I am.

Living life as a short person in a tall world can be difficult, but no one has ever said that success is linked to height.”

Zach is a freshman at Grain Valley High School. He likes to fish, play sports and video games, and hang out with his friends. He’s also hoping that being featured on the cover of this magazine catches the eye of teenage girls and scores him a few dates. Zach is fortunate that he has had relatively minor health complications as a result of achondroplasia dwarfism. Except for avoiding activities that could cause damage to his spine, like trampolines, playing football, or riding roller coasters, he stays busy playing lots of sports. Baseball. Tennis. Golf. In 2013, he competed in the Olympic-style World Dwarf Games in Lansing, Mich., where he earned five medals including one Gold Medal. This fall, he’s also the manager for the Grain Valley Eagles football team. Zach’s favorite subjects are science and social studies. He wants to either be a veterinarian or elementary school teacher.

Awareness, resources needed Zach’s siblings and parents are all average height. His three older sisters are each in their twenties and have families of their own. Zach has three nieces and one nephew, also average height. Achondroplasia is caused by a gene mutation in the FGFR3 gene, which makes a protein called fibroblast growth factor receptor 3 that is involved in converting cartilage to bone.

Because of her advanced maternal age of 38 years, when Anita Aubuchon was six months pregnant with Zach, her OB/GYN ordered a series of blood tests.

The blood tests showed a false positive for Trisomy 18 or Edwards syndrome, a chromosomal disorder that is often associated with life threatening complications before or at birth. Anita was urged to see a genetics counselor, who recommended abortion. “The blood tests were inaccurate. And the genetics counselor gave advice based on faulty information. We didn’t know that at

10 Parenting Children with Special Needs / Volume 7: Issue 5

PCWSN.com

Dwarfism Awareness Month

ACHONDROPLASIA is the most common form of dwarfism What is it?

A genetic disorder where cartilage does not convert to bone, particularly in the long bones of the arms and legs. The result is short stature. Other complications can occur.

+200

The number of different types of skeletal dysplasia.

30,000

People living in the United States with dwarfism.

80%

People with dwarfism who have average height parents and siblings.

4'4"

Average height of adult male with achondroplasia.

Zack with his parents Anita and Curtis Aubuchon.

Elizabeth Tilden Photography

the time, but regardless, aborting this child was not an option for us,” says Anita, who still feels angry over the way the situation was handled.

At the time, there was not a test that could identify dwarfism. Now there is. Even so, it would not have made a difference to the Aubuchons.

Anita says she proceeded with her pregnancy because of her Christian faith and a belief in the sanctity of this child’s life. Ultimately, monthly sonograms would reveal that Zach’s limbs weren’t developing at the same rate as his trunk. “We had a few months before Zach was born to get prepared,” said Curtis Aubuchon, Zach’s dad. “I was angry at God when we first learned what was wrong, but that all went away the second I saw Zach,” he said. Then and now, the resources and information available on dwarfism are limited. “There is not as much attention given this genetic disorder because the overall number of people affected is relatively small,” said Curtis.

Today, it is often recommended that babies with dwarfism be delivered by cesarean section to avoid birth trauma associated with a large head.

After birth, parents need to protect the child’s spine and neck. “No sitting in baby swings or jumping in a bouncy seat,” said Anita. “It’s also

PCWSN.com

common for infants with dwarfism to suffer respiratory problems due to small lungs,” she added. Before he was one-year-old, Zach had both pneumonia and RSV. Other complications include compression of the brain stem, excess fluid on the brain, breathing problems, ear infections and joint pain. Little People of America (LPA), of which Anita is President of the Central Star Kansas City Chapter, recommends parents of children with dwarfism make sure their pediatrician has reviewed “Health Supervision for Children with Achondroplasia.” The article, written by the Committee on Genetics of the American Academy of Pediatrics, was updated in 2005.

’

’

I m just small, that s all Little People of America, which celebrates October as Dwarfism Awareness Month, strives to bring solutions and global awareness to the issues affecting individuals of short stature and their families. For his part, Zach is proud to have been asked to speak at local schools. “When I started middle school, 6th grade was especially traumatizing. The boys were starting to hit puberty and getting taller,” he says. Zach found it annoying that he was suddenly considered ‘cute.’ Rather than being

Volume 7: Issue 5 / Parenting Children with Special Needs 11

Patrons and staff of Mike & Jake’s, a local restaurant, raised funds for a Segway, that will someday help Zach get around college campus.

Zack says,

“I was born to be short. There’s nothing I can do about it. It’s who I am.”

There are some things Zach can’t do, like reaching the peddles on a go-kart.

taken seriously by his peers they treated him as if he was a younger child, patting his head and picking him up.

Each year Zach sells bracelets to classmates to educate others about dwarfism and to raise money to attend LPA conventions in various states.

He says the bracelets have been very popular.

One year they were imprinted with the phrase, “I’m just small, that’s all.”

Even Zach’s parents admit that sometimes it’s hard for them to let go. “I forget to treat Zach according to his age, not his height,” said Anita. Curtis continues, “We’re overprotective. We have trouble turning loose.” Curtis retired in 2010 from a job he held for more than 30 years. “This gave me an opportunity to become a school bus driver. I’m able to be active in his life, active in school, and keep an eye on Zach,” he said. While his parents worry some about bullying, they worry more about Zach getting hurt because he’s trying to keep up with his peers. “He’s a dare devil,” said Anita. Once when he was young he climbed on top of the refrigerator in order to reach something he wanted.

There are many things that average height people take for granted that individuals with dwarfism

12 Parenting Children with Special Needs / Volume 7: Issue 5

At the Dwarf World Games, Zach competed in Javelin, Discus, 40- and 60-meter dash, and basketball.

PCWSN.com

have to work around. Reaching elevator buttons, opening heavy doors, using the urinal in men’s bathrooms, reaching straws and ketchup at a fast food restaurant, and keeping up with others while walking in a crowd are just some of the concerns.

The current challenge is learning to drive. Anita has ordered pedal extensions for an SUV that will become Zach’s, but before he can start to practice driving, they also need to get a letter from Missouri Department of Transportation giving permission to disengage airbags. Because of his size and weight, an airbag deployment could cause serious injury to Zach.

According to Anita, the Grain Valley School District has “bent over backwards to accommodate Zach.” A 504 Plan provides longer passing time between classes, lower level lockers, and more bathroom breaks for Zach. In 2007, during construction of a new elementary school, the principal frequently checked in with Aubuchons to inquire about modifications to make to the building that would make life easier for Zach.

He is also the proud owner of a Segway transportation device, provided to him by Variety Children’s Charity of Greater Kansas City, which is useful in keeping pace with longer legs when walking long distances, such as on field trips.

PCWSN.com

Not without controversy In the last decade, reality television has shined a light on dwarfism. TLC’s Little People, Big World and The Little Couple, are just two of half a dozen that have aired on various networks. Asked what they thought of these shows, the Aubuchons agreed that some have more value than others, but in general they feel the attention has increased sensitivity among average height people regarding dwarfism and offensive terms, such as midget.

The Aubuchons joined LPA right after Zach was born. “The organization does a good job of tackling the social issues and highlighting the facts about dwarfism, but we need more medical information on complications and procedures and we need lists of experts in other specialties that are well-versed in dwarfism,” said Curtis.

Zach has had two surgeries to put plates and screws in his knees and ankles in order to direct straighter bone growth. These types of orthopedic surgeries are not uncommon, as are surgeries to correct curvature of the spine or to repair degenerative hips. Extended Limb Lengthening, however, is much more controversial in both the medical and Little People communities.

Zach knows one individual who underwent the

procedure over the course of five years, ultimately standing at 5 feet tall. Zach asserts that the decision to undergo limb lengthening is an extremely personal choice, one that can’t be made lightly.

LPA provides a position statement on the matter at LPAonline.org/ell-position-statement.

Zach’s advice is one young people with any number of physical or mental challenges can prescribe to. He says: “No matter what makes you different, be honest, respectful, polite, and humble, and you should never feel insecure about your difference.”

Tracy Bennett is a freelance writer and owner of Mighty Mo Media Partners, a public relations, media strategy, and event planning company. She specializes in connecting small businesses to media outlets, especially in niche or trade industries. She is mother to two teenagers, one of which has ADHD. Contact her at tbennett@mightymomedia.com.

Cover and Family Photos: Liz Tilden, Elizabeth Tilden Photography, stays busy with four children and their sports, music, and church activities. She recently relocated to Kansas City from Texas, but has been shooting children, families, weddings, and senior portraits, professionally since 2013.

Contact her at 816-304-8576 or liz@elizabethtildenphotography.com.

Volume 7: Issue 5 / Parenting Children with Special Needs 13

Missouri to Recognize October as

Brachial Plexus

AWARENESS MONTH Know the risk factors for prevention during birth

By Virginia Cullan or the first time this year, Missouri will recognize October as Brachial Plexus Awareness Month. Often brachial plexus injuries occur to an infant at birth due to shoulder dystocia combined with excessive force.

October. Thanks to efforts of State Representative Rob Vescovo, Missouri passed House Bill 1538 in June, to bring attention to this issue. Representative Vescovo has a brachial plexus injury himself. He knows how important early diagnosis and treatment can be in prevention of brachial plexus injuries to infants.

Many pregnant women have never heard of obstretic brachial plexus injuries (OBPI), but unfortunately, they are quite common, affecting as many as 3 per 1000 births. In the United States, that’s nearly 12,000 babies per year who sustain injuries that can often be prevented.

What are brachial plexus injuries?

F

Prevention is based upon reducing the occurrence of shoulder dystocias.

Increasing awareness among pregnant women and doctors is the goal for

The brachial plexus is the major bundle of nerves that starts at the base of the neck and runs through the shoulder and down into the arm and hand.

Injuries occur when the baby’s shoulders come down the birth canal in an unusual position, and the “top” shoulder gets stuck the cartilage connecting the right and left pelvic bones. The bundle of nerves, which consists of trunks (primary nerves...think tree) and cords (smaller and thinner...think

Shoulder Dystocia with Brachial Plexus Injury Brachial plexus

Pubic bone

Cervical vertebrae

Sagittal (cut) view of a full-term uterus

Copyright 2016. Nucleus Medical Media. All Rights Reserved. www.nucleusinc.com

14 Parenting Children with Special Needs / Volume 7: Issue 5

PCWSN.com

branches), become stretched or ruptured. Injuries can range from mild and recoverable to serious and life-long, affecting the use of hand, wrist or whole arm.

A stretch injury is just what it sounds like: the nerve tissue gets stretched and swells, and causes things like decreased movement or sensation. But as the swelling goes down, nerve functions return. This type of injury is most likely to have a full recovery, but often, only the passage of time will tell you if it’s a stretch injury or something more serious.

Frontal View Nerve injuries vary in severity depending on whether nerve was severely stretched, torn or ruptured.

The nerves can also rupture, which is a complete or partial tear. If there is a partial tear, the nerves attempt to grow back together. The severity of the injury depends on how difficult it is for the body to form scar tissues and nerve fibers to reconnect the disrupted nerve supply. Sometimes an EMG has to be used to determine whether there’s a meaningful reconnection of the nerve impulses that used to flow through the injured portion of the brachial plexus.

A complete rupture is when the nerve is torn apart and there are no connecting nerve fibers left. While the body will attempt to heal itself, it’s unlikely that will happen. Surgery is therefore sometimes needed to repair a complete or partial rupture.

An avulsion is the most serious type of injury. Picture a tree ripped out of the ground by a tornado, and the churned up earth in and around the hole where the roots had been. The “hole” that is left when the nerve root is torn out of the spinal cord can impair the flow of the nerve impulses which are

Copyright 2016. Nucleus Medical Media. All Rights Reserved. www.nucleusinc.com

There are times when a child’s intellectual/ developmental disability coupled with challenging behaviors leaves their natural family unable to cope.

When this happens these families turn to Lakemary. We work to broaden the circle of loving care by matching and placing special needs children, ages 5-21, with a Lakemary-trained therapeutic foster family.

Lakemary is turning to you. Are you interested in changing a child’s life by welcoming a boy or girl into your home and being their “real-life superhero”?

Will you be my su p e r h e ro ?

Placements are long-term and the involvement of the natural family is always encouraged.

More Superheros Needed.

Contact Lakemary’s Supported Family Living Coordinator at (913) 671-1800 ext. 207 today.

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www.lakemaryctr.org Volume 7: Issue 5 / Parenting Children with Special Needs 15

supposed to be going up and down the spinal cord. That can cause a reduced ability to move the arm on the same side as the injury, and even a reduction in the growth of the arm. The only known cause of avulsion injuries is extreme traction (pulling) applied to the brachial plexus.

You may have heard of Erb’s Palsy, Klumpke Palsy, or Horner Syndrome. These describe brachial plexus injuries according to where they are in the body. The location of a brachial plexus injury determines what functions are impaired or lost.

Causes and prevention

There are two causes for virtually all brachial plexus injuries at birth: (1) a shoulder dystocia combined with (2) excessive force.

To get the baby out, traction is applied, that is, the baby is pulled on, usually in a down and out direction. Excessive force pulls the baby’s head away from the shoulders, stretching the brachial plexus, and possibly leading to the types of injuries described above.

Since virtually all permanent brachial plexus injuries are caused by excessive force when a shoulder dystocia occurs, prevention is based upon reducing the occurrence of shoulder dystocias.

The main risk factors for shoulder dystocia are:

1. Macrosomia (a large baby) 2. A small or misshaped pelvis 3. Excessive weight gain by the mother 4. Gestational diabetes 5. Short maternal stature 6. A shoulder dystocia at a prior birth 7. A brachial plexus injury at a prior birth 8. Slow dilation/descent 9. Use of forceps or vacuum extractor

During pregnancy, women should be proactive and discuss the seven pre-birth risk factors with your doctor well before labor starts. Use this information to determine if a cesarean section should be planned. If you have a prior history of shoulder dystocia or brachial plexus injury (Factors 6 and 7), you should insist on a caesarean section. If your doctor refuses, find a new doctor. Medical literature proves that if shoulder dystocia has happened once it is likely to happen again. There is no reason to attempt a vaginal delivery in this setting.

In addition, the greater the number of pre-birth risk factors, the greater the risk of a permanent brachial plexus injury. Remember that a shoulder dystocia is an emergency. When it occurs there is the risk that the doctor 16 Parenting Children with Special Needs / Volume 7: Issue 5

will use excessive traction, thereby injuring your baby. It is better to avoid this risk if at all possible.

It is well-established that abnormalities in dilation or descent should alert the delivery team to the fact this particular baby might be a tight fit through this particular birth canal. The risk of shoulder dystocia in this setting is well known.

Sometimes the mere fact of slow dilation or slow descent will cause a doctor to immediately decide to use forceps or a vacuum extractor to speed the birth. It’s crucial, though, that before using either device, the doctor has to rule out a “tight fit” as the cause. If the doctor wants to use forceps or a vacuum extractor without having first evaluated the fit of your baby through your pelvis, ask for a caesarean section instead.

After an injury

If your child’s brachial plexus injury is severe, there is unfortunately, a very long list of possible long-term complications. A partial list includes: • reduced strength and stamina; limits to the range of motion and dexterity in joints at the shoulder, elbow, wrist and fingers; muscle atrophy; • impaired bone growth; discrepancies in limb length and size between the injured and non-injured side of the body; • impaired balance and coordination, and decreased ability to coordinate the movement and function of both hands when they need to work together, as in assembling something or just typing.

Whether a brachial plexus injury is unavoidable or caused by negligence, the most important thing to remember is that treatment can make a major difference in how well your child recovers. When a parent is made aware of a brachial plexus injury at birth or if the parent suspects that their child’s fingers, hand or arm are not moving properly, they should consult with their pediatrician as soon as possible and ask for a referral to a specialist. Do not wait until the child’s 4-6 month check up to ask for a referral. Early intervention and treatment can be critical to obtaining the best recovery possible.

Sometimes it’s hard to get good information about long-term complications. A physician or therapist may not want to be pessimistic in describing future effects. Sadly, some doctors are just unaware of long-term complications because they are not pediatric specialists. It’s therefore vital for you to understand the possible consequences many years after your child is born.

Knowledge won’t prevent those consequences, but knowledge will allow you to prepare both you and your child for them, and help to reduce their impact to the greatest extent possible.

So, when do you seek help? Immediately. As soon as you know your child has a brachial plexus injury, get to a specialist in the field. If a referral is required to get an appointment, be as aggressive as you need to be in order to get it. Remember, early diagnosis and treatment are critical for maximizing your child’s potential.

Virginia Cullan is an attorney who thinks there is nothing more important than family. She practices law with her two brothers Dr. Sam Cullan and Dr. Gene Cullan as well as two nephews, Dr. Pat Cullan and Dr. Joe Cullan. The firm primarily handles cases involving children injured at birth, serious injuries or wrongful death occurring in vehicular accidents, and medical negligence cases.

For more information, visit DoctorsPracticingLaw.com or call 816-861-7600.

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Volume 7: Issue 5 / Parenting Children with Special Needs 17

INDEPENDENT

Living

Begins At Home

T

By Judi Mattix eaching social skills to children is among one of the top concerns parents have for the healthy development of their kids. In many cases this happens naturally. The minute a baby is born we make eye contact and smile at them, then months later when they smile back we have taught them a social skill. Smiling and talking to your baby face to face is teaching them they are valued and it teaches them about reciprocal communication. Likewise, when a parent and child play with a toy or engage in an activity together is it called “joint attention.” During joint attention parents tend to talk to children about the activity and engage in eye contact.

These two activities are very important for children to develop relationships and build social skills.

While many foundational social skills are established when children are infants and toddlers, the lessons really never stop. Many of the activities that parents engage in with younger children adapt as kids become more independent.

Parents may discover that their child has social deficits. Developmental milestones may help you identify if there is a problem. Pediatricians, daycare providers and organizations like Parents as Teachers can help identify these social milestones. Certain activities and techniques can help children develop social skills. Here are few activities I often suggest to parents.

PRETEND PLAY, ROLE PLAY

For toddlers and young school age children, pretend play is a fun way to practice every day skills. When a toddler picks up a block or toy phone, puts it to his ear and jabbers away, he is demonstrating imitative skills. For children under the age of 2-1/2 years, pretend play imitates the actions of the adults in their lives. Engaging toddlers in everyday activities is the best way for them to observe and imitate skills we use in the home. Encourage your child to copy you and offer praise or feedback when he does.

Judi Mattix is the Home Based Specialist for Children’s TLC. She has been a Head Start teacher and a parent educator for Parents as Teachers. She has a BS degree in Home Economics from Oklahoma State University.

Contact Children’s TLC at 816-756-0780 or childrenstlc.org.

18 Parenting Children with Special Needs / Volume 7: Issue 5

Don’t forget to use and label emotions in your play. Using statements like “I am so happy” or (sad, mad, scared)” can help children learn to label emotions. Pretend play gives children a safe place to practice managing feelings.

If you want a laugh, let them pretend to be the parent and you assume the role of the child. You will see how your child sees adult behavior.

Role play is especially useful for older children. Elementary school children still engage in pretend play until middle school. Children still act out every day activities and deal with stressors in their environment through play.

Parents can help children advocate for themselves by engaging in role play.

An example of this might be helping your child talk about a special device they use (glasses, hearing aid or wheel chair) on the first day of school to educate their class mates on their special need. Or help them practice answering questions about their disability.

Teens are often very uncomfortable talking to adults in official situations such as returning an item to the store, opening a savings account or applying for a job. Use role play to let them know what questions they may expect and how they should answer them. Mock interviews are a great way to help teens prepare for questions employers may ask. Teens often have trouble reading emotions and understanding the perspective of others.

Let them try to role play the adult if they will. Once again you will get the perspective of how teens see adult behavior!

GAMES

Generations of parents have engaged in baby games like peek-a-boo and pat-a-cake for a reason. These games provide children face-to-face interaction and practice making eye contact. These activities facilitate social skills and language skills. They also help strengthen the bond between parent and child. Babies learn best when parents are their play partner.

As children get older, board games are a great way to teach language, cooperation, taking turns and self-regulation. This is also how a child learns to be a gracious loser or gracious winner, which takes practice for preschoolers. Don’t let your children win all of the time. Bouncing back after losing PCWSN.com

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Volume 7: Issue 5 / Parenting Children with Special Needs 19

INDEPENDENT

Living

a game is an important lesson in resilience, and a very important life skill! Discuss how they played instead of whether they won or lost. By the same token congratulating our opponent on a game well-played when we win is just good sportsmanship! Point out good sportsmanship where you can.

For older children and teens organized sports are a wonderful way for children to develop social skills and learn about teamwork. Children learn to work cooperatively with other children, listen to direction from adults, and master skills needed for critical thinking. Remind your children that it is not as important to be the best player as it is to improve their personal performance. They should also focus on having fun and making friends!

If your child is not interested in sports or cannot compete in physical sports don’t forget team activities such as debate, band, choir, robotics teams, flag team and cheerleading. They will still be part of a team and learn the same principles. The YMCA has adaptive sports and cheer clinics through the Y Challenger program. Check with your child’s health care providers for more options for adaptive sports opportunities.

SOCIAL OUTINGS

Children depend on parents for enriching social opportunities outside of the home. Children need to interact with people both inside and outside of their family. Every day errands can teach a variety of social skills. Babies can be taught to say “Hi” and “Bye” to fellow shoppers or the cashier. Pre-

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816-501-5138 20 Parenting Children with Special Needs / Volume 7: Issue 5

schoolers can learn to ask for the free cookie offered by most grocery stores or order their own ice cream. If your child is shy practice ahead of time and support the child as they interact with adults in the community. Let your child speak for himself when you can with the language skills he possesses (including sign language and/or word cards).

This is especially important for children with developmental disabilities.

It is important for children with special needs to know how to engage with their community. Dr. Temple Grandin, a noted authority on autism, has said, “We have to keep these children engaged with the world.” Give children with special needs the words to talk with people and advocate for themselves when strangers ask questions.

Many organizations in Kansas City have social events for children and teens with developmental disabilities. YMCA Challenger has social opportunities for teens 12 and up. The Down syndrome Guild STARS program offers many social activities for people with Down syndrome and their families.

They also offer cooking classes for independent living skills.

FAMILY DINNER TABLE

Research shows that there are many benefits for families who eat together.

It increases language skills, self-esteem, and children tend to have a higher grade point average. For teens there is evidence for lower rates of substance abuse, teen pregnancy, and depression.

The Family Dinner Project (thefamilydinnerproject.org) has great ideas for family dinners, cooking and research on benefits of eating together as a family. Eating together is also a great place to model table manners, encourage conversation skills, take turns and get to know your children. Remember to use your manners. Children learn best by modeling adults.

CHORES AND SELF-HELP SKILLS

Chores don’t have to be drudgery. When children help around the house they are contributing member of the household. Chores teach responsibility and a sense of self-esteem. Small children love to help parents and are often offended when told they are too young to help. They feel so proud when they are capable of helping adults.

One of the most important things we can teach our children as they grow up are skills for living on their own in the future. Our goal as parents should be helping children to live as independently as possible. Older children should know how to do laundry, cook, use the vacuum and clean PCWSN.com

Cooking together helps children learn to follow instructions, (added bonus, cooking exposes children to literacy, language, math, and science). They are also much more likely to eat what they help prepare. Let them help you choose what make for dinner. Let teens look at what ingredients you have in the cabinets and what you can make out of them. Knowing how to cook gives them self confidence in their abilities and it is a skill they will use for a lifetime.

SIBLING RELATIONSHIPS

Don’t discount the lessons your children can teach each other. Give your children a chance to practice conflict resolution on their own, coaching them if arguments get too heated. Give them words to use to negotiate when conflict arises. Playing cooperatively will be one of the most important life skills they can learn.

a bathroom. Start by doing the chore with them and doing a small part of the chore. As they become more proficient add onto the chore until they can do the whole chore by themselves. An example of this would be having small children match socks in the laundry. As they reach preschool age they can sort everyone’s socks and shirts. As teens they should know the whole process from sorting laundry into hot, cold and warm loads, using the machine, drying, folding, and putting away.

PCWSN.com

Children with special needs will rely on peers to help them learn. Siblings are their first peers. Don’t make your children give into your child with special needs all of the time. You will encourage learned helplessness in your child and build resentment with his siblings. Your child will rely on his siblings throughout his/her life and siblings will be their biggest advocate.

Apply the same behavior rules to your child with disabilities as you would for your other children. Their future teachers and employers will thank you.

Finally, the best advice is to model the behavior and values for the adult you want your child to become. Our kids are watching us. A quote from author Clarence B. Kelland sums it up: “My father didn’t tell me how to live; He lived and let me watch him do it.”

Volume 7: Issue 5 / Parenting Children with Special Needs 21

HEALTHY

Living Encourage kids to practice

Healthy Handwashing Habits Teaching children good handwashing habits is one of the most important steps you can take to keep them healthy.

Keeping hands clean prevents the spread of germs that cause illness.

How to do it right

Wet hands with clean, running tap water (cold or warm).

Apply regular soap.

Antibacterial soaps are not necessary in the home.

Scrub for 20 seconds (the time it takes to sing “Happy Birthday” twice).

Rinse well under clean running water.

When to use hand sanitizers

Dry hands with a clean towel or let them air dry.

If you don’t have soap and clean running water, hand sanitizers containing at least 60 percent alcohol can reduce the amount of germs on your hands in some situations.

Hand sanitizers are not as effective as soap and water if your hands are dirty or greasy. Hand sanitizers work well against some germs, but handwashing with soap and water is best.

For more health tips, visit uclahealth.org/mattel 22 Parenting Children with Special Needs / Volume 7: Issue 5

Lather hands. Be sure to get the backs of your hands, between fingers and under nails.

it begins with PCWSN.com

CHARITY

Update

Sunday

Oct. 9

Heil Family Receives Grant for Transportation and Lodging

Register for Tees for Tots Our next event is the Tees for Tots golf tournament. This year it will be held at Topgolf, Overland Park, Kan., on Oct. 9 from 2 pm to 5 pm. Tickets are $100 to $600.

Register online at EventBrite.com.

Need a Christmas Miracle?

Applications for Santa’s Miracle Program are due Oct. 15.

To qualify, the child must be under the age of 18, have a complex medical issue that is considered chronic or terminal, reside within the Kansas City metropolitan area, and not be receiving assistance from any other organization.

Santa’s Miracles provides a private, home visit with Santa Claus, who comes bearing gifts for the entire family.

Swing dancing and carnival games rounded out the fun at the 5th Annual WineRaiser.

T

his summer, PCWSN Charity, a MO 501(c)(3) organization, has held several fundraisers to benefit families who have a child with challenges associated with a medical diagnosis. The WineRaiser and Silent Auction, held July 21 at Thompson Barn in Lenexa, Kan., featured a vintage carnival theme. Guests took swing dance lessons and played old fashioned games. Then on August 20, a Luau held at Centerline Beach Volleyball in Blue Springs, Mo., featured a sand volleyball tournament, live music, and pig roast.

JW Heil

PCWSN.com

These two events raised more than $14,000, which supports grants for medical equipment, transportation, modifications for home living, and other medical expenses. The most recent family to receive a grant was the Heil Family.

JW Heil is a first grader who is battling a second round of Neuroblastoma. His treatment includes Metaiodobenzylguanidine Therapy (MIBG) that will take place in Texas.

The PCWSN Grant and an additional, generous donation from the Jake Cavanaugh Foundation, will assist in covering the Heil Family’s transportation and lodging costs.

JW will be in Texas for up to 21 days. The Jake Cavanaugh Foundation supports funding for osteosarcoma research and provides support to children and families affected by cancer. Learn more at jakecavanaugh.com.

Download the application from our website at pcwsn.com/about-our-501c3/ or email stephanie@pcwsn.com for more information. Community organizations that would like to get involved can help by adopting the family PCWSN Charity selects for Christmas 2016.

Contact us for more information.

PCWSN Recognized by Total Pediatrics

PCWSN Charity and Parenting Children with Special Needs magazine was recognized in August by Kentucky-based Total Pediatrics, as one of the best 115 resources for parents of children with special needs. Total Pediatrics provides occupational, physical and speech therapy, as well as behavioral and mental health services to children.

Volume 7: Issue 5 / Parenting Children with Special Needs 23

Providing

Compassionate Care for Your Child

Providing care for your child with special healthcare needs can place tremendous stress on you and your family, but you are not alone.

Integrity partners with families to provide specialized pediatric and neonatal nursing care, education, support and peace of mind. Our trained Pediatric team consists of Personal Care Aides, LPNs, and RNs that are available 24 hours a day, 7 days a week.

Integrity can also help at School

Throughout their education, we can help your child with all their medical and personal care needs at school. Depending on your child’s needs, we can help with: • Daily transportation assistance to and from school including riding the school bus • Nursing care throughout the school day • Facilitating daily tasks, such as writing or turning pages • Assisting with personal care tasks, such as toileting, eating and mobility We accept many funding sources, including: Medicaid, KanCare, Private Insurance and Self-Pay

Contact us today! 888-793-1795 | integrityhc.com 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.

24 Parenting Children with Special Needs / Volume 7: Issue 5

PCWSN.com

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

n

Cullan & Cullan m.d., j.d.

FRE E

ResourceGuide

Parenting Volume 7 : Issue 5 /

Ch ild re n wi th Sp ec ial Ne ed s

Small

, That s All

OCTOBER

Brachial Plexus and Dwarfism Awareness

Internet Research:

Proceed with Caution KC’s Only Pediatric

n Allergies 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 • 816.333.6608

Food Allergy Research & Education (FARE)

Raises public awareness, provides advocacy and education, advances research on behalf of those affected by food allergies and anaphylaxis. • foodallergy.org • 800.929.4040

n Arthrogryposis/Arthrogryposis

Multiplex Congenita

Amcsupport.org

Provides and encourages understanding and mutual support among anyone affected with the diagnosis of arthrogryposis multiplex congenita (AMC).

• amcsupport.org

n Attention Deficit Disorder Accelerated Schools of Overland Park

Provides individualized learning programs for students of all academic levels and various special needs, including ADD/ADHD, Asperger’s syndrome, attachment disorder and more.

• acceleratedschoolsop.org • 913.341.6666

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

Cognitive Training for Attention and Learning Problems Evidence-based, computerized five- week training program designed by leading neuroscientists to help improve attention, concentration and focus for ADHD and memory deficits. Includes easy-to-use software and personal support. • Contact Avner Stern, PhD. astern@bhsks.com • 913.906.9559, ext.106

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

Children’s Mercy Hospital and Clinics

The Developmental/Behavioral Science Clinic offers monthly family trainings on topics associated with autism. See ad page 2 • www.childrensmercy.org/ autismparenttraining • 913.696.5711 Provides an array of services for children diagnosed with autism and their families. Services include Early Intensive Behavioral Intervention (EIBI), inclusionary preschool, Positive Behavior Support (PBS), autism waiver, targeted case management and behavior consulting services. • clokan.org • 913.341.9316

Joshua Center

Provides services and support for the social, emotional, medical and educational needs of neurologically impaired children, including children with Asperger Syndrome, Obsessive Compulsive Disorder and tourette Syndrome, and their families. • joshuacenter.com • 816.763.7605

Milestones Academy

School for special needs children specializing in working with children with autism and severe behavior disorders.

Provides year-round, 1:1 academic instruction using progressive Applied Behavior Analytic programs for individuals aged 5 to 21. See ad pages 9, 20 and 31.

• pbmkc.com • 816.501.5138

Successful Sounds

Parenting the A.D.D. and A.H.D. Child Support Group

Parent support group. Sponsored by Olathe Medical Center and Olathe School District Meets Tuesdays from 7:00-8:30 p.m. at Olathe Medical Center. • 913.780.7002

n Autism Autism Society of the Heartland

n Batten Disease Batten Diesease Support & Research Association

PCWSN.com

Start at Home

Health and Services Res

ource Guide

n Birth Defects or Injuries March of Dimes Kansas/Greater Kansas City Chapter

Strives to improve the health of babies by preventing birth defects, premature birth and infant mortality through research, community services, education and advocacy to save babies’ lives. • marchofdimes.com/ Kansas • 913.469.3611

n Blindness or Vision Disorders Alphapointe Association for the Blind

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

• alphapointe.org • 866.240.1352

American Federation for the Blind

CLO Children’s Autism Network

Provides a variety of social and leisure group opportunities in relationship to behavioral and social-emotional development for children with autism ages 4-10.

Sessions include indoor and outdoor games, music performance and singing, swimming lessons, sports, camp crafts, camp snacks, picnics, family style meals/ etiquette, shopping, parties, bowling, movies, arcade and more. • successfulsounds.com • 913.383.8465

Provides support, education and advocacy for the autism community. • asaheartland.org • 913.706.0042

PCWSN.com

Provides information, supporting families and promoting research efforts for families of children and young adults with Batten Disease. • bdsra.org • 800.448.4570

Expands possibilities for the more than 25 million people with vision loss in the U.S. • afb.org • 1.800.AFB.LINE (232.5463)

Children’s Center for the Visually Impaired (CCVI)

Prepares Kansas City area children with visual impairments, including those with multiple disabilities, to function at their highest potential in the sighted world.

• ccvi.org • 816.841.2284

Kansas State School for the Blind

Empowers students with knowledge, attitudes and skills needed to assume responsible roles in society and to lead fulfilling lives. • kssb.net • 913.281.3308

n Brachial Plexus Injury/Erb’s Palsy Birthinjury.org/Midwest Brachial Plexus

Grain Valley-based nonprofit support group started by parents of children who have brachial plexus injuries, cerebral palsy and birth injuries. Parents mentor other parents. Provides education, support, financial and other practical resource information. • birthinjury.org • 816.914.1957

n Brain Injury Birthinjury.org

See our listing directly above.

Brain Injury Association of Kansas

Provides services and supports to those living with all forms of brain injury, awareness and understanding of its effects, as well as prevention. Support group meets the third Monday of each month from 6:00-7:30 p.m. at Johnson County Library, 9875 W. 87th Street in Overland Park and also every Tuesday at 6:00 p.m. at Johnny C’s Pizza, 11200 W. 75th Street, in Shawnee. • biaks.org • 913.754.8883

Full Guide Available on PCWSN.com

Volume 7: Issue 5 / Parenting Children with Special Needs 25

ResourceGuide

SPONSORED BY

Guide also available on PCWSN.com See ad pages 19 & 24.

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 7:00 p.m. at two locations - Hillside Christian Church, 900 NE Vivion Road, Kansas City, and Truman Medical Center-Lakewood, 7900 Lee’s Summit in Kansas City.

• biamo.org • 800.444.6443

n Brain Tumors 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

Brain Tumor Survivor Support Group

Focues on those diagnosed with a brain tumor and their family. Support group meets the second Tuesday of every month from 7:00-8:30 p.m. at St. Luke’s Hospital in Kansas City. • 816.932.6220

National Brain Tumor Society

n 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.FACE

Cleft Palate Foundation

Strives to enhance the quality of life for individuals affected by cleft lip and palate and other craniofacial birth defects. • cleftline.org • 800.665.3223

n Crohn’s & Colitis Crohn’s & Colitis Foundation of America

CCFA is a non-profit, volunteer-driven organization dedicated to finding the cures for Crohn’s Disease and ulcerative colitis. Kansas City Chapter Support Group meets 4th Tuesday of each month (Jan-Oct) from 7:00 p.m. – 8:00 p.m. at North Kansas City Hospital.

• ccfa.org • mlarosewicks@ccfa.org • 314.863.4747

Comprehensive resource (research and patient services) for patients, families, caregivers, researchers, and medical professionals. • braintumor.org

The J-Pouch Group

Pediatric Brain Tumor Foundation

n Cystic Fibrosis Heart of America Chapter of the Cystic Fibrosis Foundation

National non-profit that supports medical research, increases public awareness, aids in early detection and treatment, provides support for children and families.

• CureTheKids.org • 800.253.6530

n Cancer/Oncology Leukemia

Leukemia & Lymphoma Society Mid-America Chapter • lls.org/mid • 913.262.1515

Survive & Thrive

Long-term follow-up program at Children’s Mercy Hospital for childhood cancer survivors. Offers a comprehensive clinic 4 times a month and provides medical, emotional, and ongoing care. Contact Wendy McClellan at childrensmercy.org/surviveandthrive • 816.460.1053

n 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 • 1.800.4MYCHILD

Birthinjury.org

Grain Valley-based nonprofit support group started by parents of children who have cerebral palsy and other birth-related injuries. Parents mentor other parents. Provides education, support, financial and other practical resource information. • birthinjury.org • 816.914.1957

Facebook KC Cerebral Palsy Parent Support Group

Shares tips, information and support for Kansas City area families affected by cerebral palsy. • Contact Christy at ouryellowbrickrd@gmail.com. • facebook.com

UPC of Greater Kansas City

Provides support services to promote “life without limits for people with disabilities.” Support groups for “respite care” and “sib shop” meet the first Friday of every month at the Leawood Baptist Church. • ucpkc.org • 816.531.4454

Website dedicated to the Ileo-anal anastomosis, or “J-Pouch” operation. • j-pouch.org

Serves Kansas and Western Missouri families affected by Cystic fibrosis. • cff.org/Chapters/heartofamerica • 913.384.8997

n Deaf and Hard of Hearing Able Hands Interpreting Services

Provides interpreting services with flexibility and choice.

• ablehands.net • 816.838.HAND

Diabetes Center Family Support Group

Four times a year, Children’s Mercy Hospitals and Clinics offers group support and free dinner to families, siblings, caregivers, and patients with type I diabetes.

• childrensmercy.org/Content/Pediatrics/AdolescentMedicine/ • 816.234.3882 (Lara Simon) • 816.802.1251 (Heather Feingold)

Diabetes Teen Girl Support Group

Group meets monthly from 5:00-6:30 p.m. in the diabetes education room at Children’s Mercy Hospital.

• childrensmercy.org/Clinics_and_Services/Clinics_ and_Departments/Endocrinology_and_Diabetes/Diabetes_Team/Child_and_Family_Support/ • 816.234.3882 (Lara Simon) • 816.802.1251 (Heather Feingold)

Juvenile Diabetes Research Foundation Kansas City Chapter Strives to find a cure for diabetes and its complications through the support of research. • jdrf.org • 816.472.7997

Kids with Courage Foundation

Encourages children and young people battling Type 1 diabetes by providing positive support programs.

• kidswithcourage.org • Daphna@kidswithcourage.org • 816.478.0253

n Down Syndrome Down Syndrome Guild of Greater Kansas City

Provides support and resources for individuals with Down syndrome and their families. • kcdsg.org • 913.384.4848

Down Syndrome Guild of Greater Kansas City Support Groups:

American Society of Deaf Children (ASDC)

African American FRIENDS Down Syndrome Guild program serving African American families throughout the Kansas City area.

• Petrice Welch at 816.531.7265 • chelwelch@yahoo.com

Deaf Cultural Center and William J. Marra Museum

Dotte FRIENDS Down Syndrome Guild program serving families living in Kansas City, Kan., communities, such as Leavenworth, Bonner Springs, Edwardsville and Piper. Meets monthly.

• Becky Mesler at 913.788.9013 • abecky529@kc.rr.com

Kansas Association of the Deaf

Eastland FRIENDS Down Syndrome Guild program serving families living in Lee’s Summit, Independence, Blue Springs, Raytown and other suburbs in Eastern Jackson County. Meets monthly.

• Jenni Bryan at 816.347.0994 • kjmmbryan@yahoo.com

Provides support, encouragement, and information to families with deaf children, supports sign language at home, school and in the community. • deafchildren.org • 800.942.ASDC Community resource. Brings deaf culture to life. Unites deaf and hearing communities in a common bond of understanding and appreciation. • deafculturalcenter.org • 913.782.5808 V/TTY; 913.324.5348 VP Helps and encourages deaf people by securing moral, intellectual and social improvement of their education and vocational opportunities. • deafkansas.org

Kansas Parents Association for Children who are Deaf or Hard of Hearing

Support group based in Overland Park. • 913.362.4860

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 whenever necessary. • mcdhh.mo.gov • 573.526.5205

n Diabetes American Diabetes Association Kansas City Office

Strives to prevent and cure diabetes and to improve the lives of all affected by diabetes. • diabetes.org • 913.383.8210

26 Parenting Children with Special Needs / Volume 7: Issue 5

Esperanza: Cada niño trae un rayo de luz especial al mundo. Todos merecen un futuro brillante. Visión con Esperanzqa 360º fué creado pensando en el futuro de los niños y sus familias. Está dirigido a los niños latinos que tienen discapacidad en el desarrollo. Lleva esperanza a sus familias. Hay algo en lo que esta programa le puede ayudar? Llámenos. Nos vá a dar mucho gusto responder a sus preguntas: • 816.241.3780 Family Advocacy Center for Educational Support (FACES) Down Syndrome Guild program meeting monthly in Olathe to discuss educational issues.

• Debbie Horn at 913.768.6717 • debbie@horns4.com

PCWSN.com

ResourceGuide

SPONSORED BY

Guide also available on PCWSN.com n Epilepsy CeCe Cares Pediatric Epilepsy Foundation

See ad pages 9, 20 & 31.

Johnson County FRIENDS Down Syndrome Guild program serving families living in Johnson County. Meets monthly.

• Debbie Yost at 913.814.9739 • deb.opks@gmail.com Lawrence and Topeka FRIENDS Down Syndrome Guild program serving families living in Lawrence and Topeka. • Anne Martinez at 785.354.8243 • richard-anne@sbcglobal.net Northland Buddies Down Syndrome Guild program serving families living in Kansas City North, Liberty, Smithville, Kearney, Parkville and other surrounding Northland cities in Clay and Platte counties. Meets monthly.

• Kris Plubell at 816-792-4671 • kdkb@plubells.com Rural Missouri FRIENDS Down Syndrome Guild program serving families living in Brookfield, Chilicothe, Keytesville, Meadville and other rural communities. Meets quarterly. • Kathy McCurry at 660.258.7204 • kmccurry@shighway.com St. Joseph FRIENDS Down Syndrome Guild program serving families living in St. Joseph. • Stephaine Mefford • 816.364.0003 Teen Club Down Syndrome Guild program serving teens and their families living in Eastern Jackson County. Teen Club meets the fourth Saturday of each month for social activities and group outings. • Diane Chrisman at 816.229.2034 • dianesingsforjoy@comcast.net First Downs for Down Syndrome Teams with the Kansas City Chiefs Offensive Line to raise money, awareness and create positive images of those with Down syndrome. • fdfds.org • 913.722.2499 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

n Dwarfism Little People of America Central Star Kansas City Chapter Provides support and information to people of short stature and their families. Short stature is generally caused by one of the more than 200 medical conditions known as dwarfism. • lpadistrict7.org/centralstar

Brain Balance Center of Overland Park

Provides individualized and comprehensive approach to helping children with neurobehavioral and learning difficulties surmount their unique challenges.

• brainbalancecenters.com • 913.627.9400

Children’s Center for the Visually Impaired (CCVI) See Blindness or Vision Disorders

EXCEL (Expanding College for Exceptional Learners)

Johnson County Community Colleg Project CLEAR

Oley Foundation

LeeAnn Britain Infant Development Center

n General American Association of People with Disabilities

Provides non-credit continuing education classes for adults with developmental disabilities or severe learning disabilities. • jccc.edu/home/depts.php/5112 • 913.469.8500 Serves children with developmental disabilities from birth to six years of age. Provides a unique program that involves parents and siblings in the process of therapeutic treatment and education. Services provided to any child in need of the program regardless of their family’s ability to pay. • shawneemission.org/health-services/ britain-infant-development-center • 913.676.2253

Milestones Academy See Autism.

PCWSN.com

Enriches the lives of those requiring home IV & tube feeding through education, outreach, & networking.

• oley.org • 800.776.OLEY

Ensures economic self-sufficiency and political empowerment for the more than 56 million Americans with disabilities. • aapd.com • 800.840.8844

Best Network

Creates communities of kindness and inclusion through performing arts, integrating people with and without disabilities. • thebestnetwork.org • bestnetarts@earthlink.net

Provides education for all children birth to kindergarten and early intervention for children with special needs.

• neeckids.org • 816.420.9005

Aids children in Missouri between the ages of 0-22 to who have serious or chronic medical conditions obtain medical treatment they cannot afford. • dhss.mo.gov • 1.800.451.0669

University of Central Missouri THRIVE Prgram

Catholic Charities of Kansas City-St. Joseph

UMKC Adult Continuing Education for Persons with Developmental Disabilities (ACED)

Catholic Charities of Northeast Kansas

Allows young adults with intellectual or developmental disabilities to participate in a two-year residential college experience in Warrensburg. • ucmo.edu/thrive • 660.543.4204

Offers adults with special needs the opportunity to attend non-credit classes in an educational and social environment. Designed to teach independent living skills and provide life-enhancing experiences.

• ihd.umkc.edu/aced/ • 813.235.1754

n Employment Reaching for Independent Successful Employment (Project RISE)

Helps children and families address and manage personal challenges, big or small, with a focus on healthy, productive solutions. Specialized training and treatment for attention deficit and learning disorders. • bhsks.com • 913.906.9559

Connects parents of children with tube feeding issues.

• tubefedkids.ning.com

Bureau of Special Health Care Needs

Northland Early Education Center

n Education Accelerated Schools of Overland Park Behavioral Health Specialists

Offers an effective medical online service for children with early eating behavior disorders, especially tube dependency. • notube.at

Tube Fed Kids – Deserve to Eat

University of Iowa REACH

See Attention Deficit Disorder.

n Feeding Tubes NoTube.at

Integrates individuals with intellectual disabilities into the Kansas City community through higher education and a commitment to an inclusive society. • excelkc.org

n Dyslexia Kansas-Missouri Branch of the International Dyslexia Association Helps individuals with dsylexia, their families and the communities that support them. • ksmoida.org • 816.838.7323

Provides comfort to children diagnosed with Pediatric Epilepsy, helps families burdened with the high cost of medical care, and funds research. • cececares.org

Creates 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

Supports individuals with a history of care from Children’s Mercy Hospitals and Clinics by establishing employment and volunteer opportunities for young adults with disabilities. • childrensmercy.org/ProjectRISE • Kathy Smith at kssmith2@cmh.edu • 816.983.6994

Protects and nurtures children and youth through adoption counseling, after school programs, parent education, foster care, pregnancy support, child abuse prevention and more. • catholiccharities-kcsj.org • 816.221.4377 Assists those in need by helping them help themselves.

Programs include emergency assistance and housing, mother and baby home health, dads enrichment program, foster care and supported family living, foster grandparents, friendly visitors, marriage keeps, pregnancy counseling and adoption, St. Benedict’s Early Education Center and parent child learning center and more. • Catholiccharitiesks.org • 913.433.2100

Camp Fire USA Heartland Council

Challenges parents and youth to build character, adopt strong values, develop positive life skills and exercise responsibility to family and community.

• campfireusa.org • 816.285.2010

Capper Center of Kansas City

Enhances independence of people with physical disabilities, primarily children, through assistive technology, speech therapy, and more. • capper.easterseals.com • 785.272.4060

Volume 7: Issue 5 / Parenting Children with Special Needs 27

ResourceGuide

SPONSORED BY

Guide also available on PCWSN.com The Children’s SPOT (Speech, Physical and Occupational Therapy) Gives children with developmental disabilities and delays the best possible start in life through early, intensive and comprehensive pediatric therapy services. saintlukesgiving.org/spot • 816.932.3832

Children’s Therapeutic Learning Center (TLC)

Provides therapeutic and educational services for children with disabilities in an environment which fosters their independence and celebrates their successes. See ad page 13. childrenstlc.org • 816.756.0780

Children with Special Health Care Needs (CSHCN)

Aids children in Missouri from birth to age 21 who have serious or chronic medical conditions obtain medical treatment they cannot afford. • dhss.mo.gov • 800.451.0669

Coalition for Independence

Provides independent living services for individuals with disabilities, their families and caregivers in Johnson, Wyandotte and Leavenworth Counties in Kansas as well as the entire Kansas City metro area. • cfi-kc.org • 913.321.5140

Collaboration Works

Collaboration Works was created as a brokerage/distribution service of medical supplies, medical goods and equipment. Available free to caregivers, seniors, and individuals with special needs. • collaborationworksonline.com • 816.421.1305

Community Works, Inc.

Assits people with disabilities in the Kansas City area to live, work, and play in the community by setting up support systems that give control back to the consumer. communityworksinc.com • 913.789.9900

Concerned Care, Inc.

Hosts recreational sports, youth day camp and vocational day camp for young people with developmental disabilities. Maximizes the capability of individuals to manage their own lives and minimize their dependence on others. • concernedcarekc.org

Dream Factory

Making dreams come true for Kansas City children.

• kcdream.org • 913.905.2900

Encouraging Families with Special Needs Together (EFECT )

Provides education, information, encouragement, support and pathways to services to families of children with disabilities. • efect.org • 816.600.8395

Empowering Our Children

Weekly radio program. Provides education and advice to parents on physical and mental health.

• empoweringourchildren.com • 913.344.1500

Family Partnership

Providies information and support to children and youth with special health care needs and their families.

• dhss.mo.gov/FamilyPartnership • 1.866.809.2400

Families Together MC Mentor

Assists Kansas parents and their sons or daughters who have disabilities. • familiestogetherincorg • 913.790.8580

See ad pages 19 & 24.

Hyperbaric Healing Institute, Inc.

Provides hyperbaric oxygen therapy for problem wound care, complications from radiation therapy. Freestanding clinic may also treat a variety of other indications, which HBOT has been shown to benefit, including Cerebral Palsy, Multiple Sclerosis, stroke, traumatic brain injury, RSD, autism, sports injury and surgery recovery.

• hhi-kc.com • 816.801.7878

Jewish Vocational Services

Strengthens the well-being of individuals, families ,and the community by promoting successful social, cultural and economic integration. • jvskc.org

Kansas City Bishop Sullivan Center

Provides basic necessities to people who are unable to do so and to move those who are able to become self-sufficient. • bishopsullivan.org • 816.231.0984

Kansas City Pediatric Alliance

Supports collaboration among pediatric professionals and families of children with special needs. Member meetings held every other month in the Kansas City area. • kcpaforkids.org

KidsTLC

KidsTLC, recognized in the top 1% of charities by Charity Navigator, transforms thousands of children’s lives each year through innovative and successful psychiatric treatment, outpatient behavioral health, homeless teen outreach, autism, and parent support programs.

• kidstlc.org • 913.764.2887

KU Kids Healing Place

Provides pediatric services for infants, toddlers, children and adolescents living with chronic, life-limiting or life-threatening health conditions.

• 2.kumc.edu/kids/healing_place • 913.588.1227

Lakemary Center

Provides psychiatric residential treatment for children from both Kansas and Missouri who have severe developmental disabilities and concurrent psychiatric disorders. Provides supported living, infant toddler programs, Lakemary School and more for children with special needs. See ad page 15.

• lakemaryctr.org • 913.557.4000

Make a Wish Foundation

Committed to granting the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy. Kansas City office serves the northern and western counties in Missouri, as well as Johnson, Wyandotte, Miami, Leavenworth, Linn and Franklin counties in Kansas.

• kc.wish.org • 913.341.9474

Metropolitan Council on Developmental Disabilities

“Grassroots” advocacy organization for individuals with developmental disabilities and their families residing within the following Missouri counties: Bates, Cass, Clay, Jackson, Johnson, Lafayette, Platte, and Ray. • mcddregion4.org • 816.889.3422

Missouri Developmental Disability Resource Center (MODRC)

Offers a network of support options so that individuals and families are well informed, hopeful, connected

28 Parenting Children with Special Needs / Volume 7: Issue 5

within their communities and know they are not alone in their experience with disability. • moddrc.org • 816.235.1763 • 800.444.0821

Missouri Parents Act (MPACT)

Assists Missouri parents in their effort to effectively advocate for their children’s educational rights and services.

• ptimpact.org • 800.743.7634

Parents Offering Parent Support (POPS)

Connects experienced families whose children are treated at Children’s Mercy. Hospital and Clinics with newly diagnosed families. Parent mentors talk and offer support to other families who are going through a similar experience. • childrensmercy.org/fcc • 816.983.6957

Partners in Behavioral Milestones

Creates meaningful change for individuals with disabilities and their families. Located in the Greater Kansas City area, PBM incorporates the principles of ABA and Positive Behavior Supports in all services. See ad pages 9, 20 & 31. • pbmkc.com • 816.501.5138

Partners in Policymaking

Leadership training program designed for self advocates and parents of young children with developmental disabilities. • 800.500.7878

People First of Missouri

Educates members in their schools, work places, homes and communities on how a person with a developmental disability has the right to live, work and play as every human being does. • missouripeoplefirst.org • 800.558.8652

The Shadow Buddies Foundation

Helps children view themselves in a positive manner.

Shadow Buddies® are condition-specific dolls designed to be a friend “just like me” for seriously ill or medically challenged children. • shadowbuddies.org • 913.642.4646

Skills to Succeed

Offers a spectrum of services for individuals with clinical, developmental, and social needs, and their families. From assessment of needs to therapeutic groups and social skills groups to day support care, it provides resources and solutions to help individuals and their care givers develop the skills to thrive.

• theskillstosucceed.org • 913.254.0001

Songs of Love

Provides free personalized songs for children and teens facing tough medical, physical or emotional challenges.

• songsoflove.org • 800.960.SONG

Special Needs Planning Center

Coordinates legal and financial planning for families who have children with special needs.

• specialneedskc.com • 816.741.1100

Special Needs Scouting with Troop-11 in Leawood

Offers traditional Scouting and outdoor-themed activities for boys (age 6-adult) and girls (age 14-adult). From tent camping to scuba demonstrations, our members and families enjoy a wide range of challenging experiences. • hoac-bsa.org • Contact Bill Haner at bill.haner@ sealedair.com • Rob Wheeler at rgwmbeck@aol.com or 816.405.3283 (Northland/Lee’s Summit)

PCWSN.com

ResourceGuide

SPONSORED BY

Guide also available on PCWSN.com See ad pages 9, 20 & 31.

Teen Clinic at Children’s Mercy Hospitals and Clinics

Adolescent medicine experts care for young individuals, ages 10-19, transitioning to adults through a comprehensive program that assesses and treats physical and emotional issues as well as acute and chronic conditions.

• Childrensmercy.org/Content/AdolescentMedicine/ • 816.960.3050

Triality, Inc. and Triality Tots Early Intervention Center

Provides day habilitation services for Clay and Platte County residents with mental and physical disabilities, and therapies, education and child care for medically fragile and/or developmentally delayed children. Triality Tots Early Intervention Center in Pleasant Valley is an integrated preschool providing wrap-around child care to meet the needs of the families in our community.

• trialityinc.org • 816.476.4011

Turning Point

Empowers and transforms the mind, body, and spirit of individuals, families and friends living with serious or chronic physical illness. • turningpointkc.org • 913.383.8700

UniqueConnect.org

Dedicated to creating and building a social network that shares educational, social, and entertainment opportunities for individuals with disabilities who are interested in greater interaction and inclusion with other like minded people and organizations. • uniqueconnect.org

Variety – The Children’s Charity of Greater Kansas City

Improves 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 • 913.558.2309

The Whole Person

Assists 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

Unlimited Play

An award winning non-profit organization that builds universally accessible playgrounds to promote health and wellness while transforming communities by providing the freedom of play for ALL children and families. • unlimitedplay.org • 636.757.3978

YMCA Challenger Program

Recreational and social program for individuals 4-30 with physical, developmental and intellectual disability.

Provides opportunity to learn, grow and thrive.

• kansascityymca.org/youth-deveopment/challenger special-needs

n Grief and Hospice Programs Alexandra’s House Perinatal Hospice House and Infant Refuge Provides active management and hope for families pregnant with or who have a baby with lethal anomalies and who is expected to die near or shortly after birth.

• alexandrashouse.com • 816.931.2539

PCWSN.com

Hipbaby Yahoo Group

Carousel Pediatric Hospice and Palliative Care and Perinatal Program

Provides specialized care at home for infants, children and adolescents with serious illnesses or for families who find out their baby will be born with a life-limiting condition. Services include nursing, social work, chaplain, music and art therapy, child teen specialist and volunteers. • Kansascityhospice.org • 816.276.2708

Compassionate Friends

Assists families with the resolution of grief from losing a child at any age. • compassionatefriends.org • Kim Kirk 785.748.0079 (Douglas County) • Barbara Starr 816.229.2640 (Johnson County)

Solace House

Provides hope and healing to grieving children and their families. • solacehouse.org • 913.341.0318

n Healthcare Funding First Hand Foundation

Provides funding so individual children may have access to healthcare where insurance and other financial resources have been exhausted; includes clinical necessities, equipment, travel. • Mary Nelson or Alexis Strother • firsthandfoundation@cerner.com

Parenting Children with Special Needs Inc. (PCWSN, Inc.)

Dedicated to enhancing the quality of life of KC-area families who have a child(ren) under 21, with challenges associated with a medical diagnosis. Provides funding, educational resources, community awareness and support. See ad page 6. • PCWSN.com

n Heart Disease and Defects Congenital Heart Defect Families Association

Offers support and sharing, as well as activities to raise awareness of heart defects. Support group meets at Children’s Mercy Hospital or North Kansas City Hospital.

• chdfamilies.org • 913.535.4970 • info@chdfamilies.org

n Hemophilia Hemophilia Federation of America

Assists and advocates for the bleeding disorders community. • hemophiliafed.org • 800.230.9797

Midwest Hemophilia Association

Promotes awareness; provides group support; educates and facilitates communication for the bleeding disorders community of Kansas and Missouri.

• midwest-hemophilia.org • 800.431.7960

National Hemophilia Foundation (NHF)

Strives to find better treatments and cures for bleeding and clotting disorders and to prevent the complications of these disorders through education, advocacy and research. • hemophilia.org • 1.800.42.HANDI

n Hip Dysplasia International Hip Dysplasia Institute

Encourages parents, grandparents and former “hip babies” to share experiences, ideas, tips on care, and to offer comfort and support. • groups.yahoo.com/group/ Hipbaby/

n Hydrocephalus Pediatric Hydrocephalus Foundation

Works to find a cure for hydrocephalus.

• hydrocephaluskids.org

n Kidney Disease National Kidney Foundation Serving Kansas and Western Missouri

Strives 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

PKD Foundation Kansas City Chapter

Provides research, education, advocacy, support and awareness for the 12.5 million people around the globe with polyCystic kidney disease (PKD). Support group meets regularly from 6:00-8:00 p.m. at the Kansas City Public Library - Plaza Branch.

• pkdcure.org/kansascitychapter • 816.931.2600

n Learning Disabilities Learning Disabilities Association of America

Advocates for individuals with learning disabilities.

• ldaamerica.org • 888.300.6710

n Lupus Lupus Foundation of America Kansas City Chapter

Works to eradicate lupus through support of research, alleviate suffering through patient services and early detection of undiagnosed cases through awareness promotion. • lifewithlupus.org • 800.9LUPUS6

n Marfan Syndrome National Marfan Foundation

Strives 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

n Multiple Sclerosis Mid-America National MS Society

Mobilizes people and resources to drive research for a cure and to address the challenges of everyone affected

by MS. Self-help groups share common life experiences for support, education, and mutual aid.

• ksg.nationalmssociety.org • 913.432.3926

n Muscular Dystrophy Jett Foundation

Works to find treatments and a cure for Duchenne muscular dystrophy (DMD) while improving the lives of those affected by DMD. • jettfoundation.org • 781.585.5566

Muscular Dystrophy Association Kansas City Office

Aims to improve the health and quality of life of those afflicted with hip dysplasia. Provides standards of care for treatment, educates doctors and provides information to caregivers. • hip-baby.org

Fights against neuromuscular disease. • mda.org • 913.451.3230

Parent Project Muscular Dystrophy

Fights Duchenne muscular dystrophy by funding research, raising awareness, promoting advocacy, connecting the community, and broadening treatment options.

• parentprojectmd.org • 800.714.5437

Volume 7: Issue 5 / Parenting Children with Special Needs 29

ResourceGuide

SPONSORED BY

Guide also available on PCWSN.com n 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

Neurofibromatosis Midwest

Promotes scientific research to creates awareness, find treatment and cure. • nfmidwest.org • 630.945.3562

n Obsessive Compulsive Disorder International OCD Foundation Support Group

Providing a support group every Thursday from 7 to 9:30 p.m. at St..Luke’s South, 12300 Metcalf in Overland Park. • ocfoundation.org • 816.246.1105

Joshua Center See Autism. n Rehabilitation The Rehabilitation Institute of Kansas City (RIKC)

Helps individuals achieve greater independence at home, school or work, and in the community. A comprehensive team of professionals provides the support, encouragement, knowledge, and skills needed to help individuals succeed in their rehabilitation process. See ad page 13.

• 816.751.7700 • rehabkc.org

n Residential Treatment Programs Gillis

Assists troubled children and their families to become healthy and self-sufficient through campus-based treatment, community-based intensive family counseling and social services and school-based day treatment.

• gillis.org • 816.508.3500

KVC Health Systems

Serves children and families who need guidance with cognitive and emotional abilities. KVC operates multiple Residential Intensive Service Programs for children ages six to 18 on KVC’s campus in Kansas City and at the Wheatland Psychiatric Hospital in Hays.

• kvc.org/kansas • 913.334.0294

Marillac

Provides a safe haven for children with special emotional and behavioral needs through psychiatric hospitalization, residential treatment and therapeutic education for children up to age 17. • marillac.org • 913.681.KIDS

Ozanam

Offers programming and therapy for youth with emotional, behavioral and learning disabilities that require out-of-home treatment. • ozanam.org • 816.508.3600

Shelterwood

A licensed therapeutic boarding school providing individual, group and family therapy along with an accredited school for at-risk youth, including those with attention deficit disorders. • shelterwood.org • 800.584.5005

Spofford

Provides prevention and therapeutic treatment services with children ages 4-12 suffering the effects of physical and sexual abuse, neglect and mental health disorders.

• spoffordhome.org • 816.508.3400

See ad pages 19 & 24.

Two Rivers Child Psychiatric Program

Offers a comprehensive treatment approach that stabilizes acute child mental and behavioral psychiatric problems. Designed to treat children, ages 5-12 experiencing serious behavioral, psychological and/or cognitive disturbances. • tworivershospital.com • 816.382.6300

TNC Community

Provides housing/residential care for adults with intellectual/developmental disabilities in group homes and individualized supported living sites across the Kansas City Metro. • tnccommunity.com • 816.373.5060

n Rett Syndrome International Rett Syndrome Foundation

Funds research 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

n Savant Syndrome Savant Academy

Supports the education of people with Savant Syndrome, including musical, linguistic, mathematical and artistic savants. Encourages scientific research into and awareness of Savant Syndrome. The initial focus of the Savant Academy is on helping blind musical savants, and in particular, on children with the Optic Nerve Hypoplasia (ONH) diagnosis. • savantacademy.org

n Scoliosis CAST (Casting as an Alternative for Scoliosis Treatment) Support Group

Provides communication and support for families affected by progressive infantile scoliosis, especially during the early treatment process.

• health.groups.yahoo.com/group/infantile_scoliosis

Infantile Scoliosis Outreach Program

Connects families of children with progressive infantile scoliosis to resources and information needed to make the best choices possible in the care of their child.

• infantilescoliosis.org • 866.417.4873

National Scoliosis Foundation (NSF)

Helps children, parents, adults and health care providers with the complexities of spinal deformities such as scoliosis. • scoliosis.org • 800.673.6922

n Sickle Cell Disease Sickle Cell Association of America Uriel Owens Chapter Strives to create awareness about sickle cell disease by supporting research, advocating for those affected, and providing parents and patients with additional medical information through Children’s Mercy Hospital.

• sicklecellkck.org • 913.735.2622 • owens@sicklecellkck.org

n Spina Bifida Spina Bifida Association

Strives to enhance the lives of those with Spina Bifida and those whose lives are touched by this challenging birth defect through education, advocacy, research, and service. • spinabifidaassociation.org • 800.621.3141

Spina Bifida - Kansas City (SBKC)

Spina Bifida Kansas City is made up of children and adults living with the challenges of Spina Bifida, as well as parents, guardians, family, friends, healthcare providers, and other supporters. SBKC is dedicated to helping families affected by Spina Bifida emotionally, educationally, and financially. • sbkc.org • 816.227.9087

n Tourette Syndrome Joshua Center

Provides services and support for the social, emotional, medical and educational needs of neurologically impaired children, including children with Asperger Syndrome, Obsessive Compulsive Disorder and tourette Syndrome, and their families. • joshuacenter.com • 816.763.7605

Tourette Syndrome Association Kansas City Support Group

Strives to identify the cause of, find the cure for, and control the effects of Tourette Syndrome. Support group meets in the Kansas City area. • tsa-usa.org

n Transportation Angel Flight Central

With the help of over 400 volunteer pilots, have flown over eight million miles and have helped transport over 22,000 passengers. Visit our website for qualifying criteria and requests. • angelflightcentral.org • 866-569-9464

Mid-America Coach

Offers a wide selection of wheelchair accessible Chrysler, Dodge, Honda and Toyota minivans from BraunAbility.

New and preowned, sales and service, trades accepted, financing available. Exceeding customer’s expectations since 2001. • midamericacoach.com • 816.945.6122

n Turner Syndrome Turner Syndrome Society of Kansas City

Improves the quality of life for individuals and families affected by Turner Syndrome through the provision of public and professional awareness about the needs and concerns of individuals and their families. • tsskc.org • 913.220.8177

n Williams Syndrome Williams Syndrome Association

Strives to enrich the lives of individuals and families affected by Williams Syndrome through support, research and education. • williams-syndrome.org • 800.806.1871

n Wolf-Hirschhorn Syndrome wolfhirschhorn.org

Provides information, discussions, stories, events and pictures of the people that are touched by WolfHirschhorn Syndrome. • wolfhirschhorn.org

4p-Support Group

Offers support networks, newsletters, bi-annual national conferences and regional gatherings for caregivers of children with 4p-, including Wolf-Hirschhorn Syndrome. • 4p-supportgroup.org

Visit PCWSN.com for the FULL Resource Guide and other great information!

30 Parenting Children with Special Needs / Volume 7: Issue 5

PCWSN.com

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Volume 7: Issue 5 / Parenting Children with Special Needs 31

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