Parenting Children with Special Needs

Kansas City / Volume 9 : Issue 5 / PCWSN.com

One Big Family Kansas City couple takes “all for one” approach

ROLL UP YOUR SLEEVES

The value of work

BACK TO SCHOOL DONE RIGHT Going the distance for all children

COVER YOUR NOSE Staying well this fall

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Volume 9: Issue 5 / Parenting Children with Special Needs

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PUBLISHER’S

Letter

The Beauty in Life’s Ups and Downs When reality sets in it can be a surprise. Sometimes it’s great, sometimes it’s good, sometimes it is bad and, well, sometimes it is just ugly. As I reflect on so many of those times in my life, I’m amazed by how even the ugliest of times became great, if not the best. It’s in the moments of reality we all face what ultimately defines who we are and who are our children are, while giving us our own unique stories in the making.

I think you would be surprised if you reached into your own heart and pulled out all those memories you considered the ugliest, when you thought you couldn’t go on. Just living in that moment seemed unbearable. However you did it. The memories show us how brave, strong, creative and beautiful we all are. As parents of children with special needs, we probably experience more ups and downs than others. Those around us have no idea who we are, where we have been, what we have gone through, when or why and how we continue to overcome.

When others say, “I just don’t know how you do it.” I reply, “How do you not? “ If you are reading this, then I know you can agree that although it’s far from perfect, it’s perfect enough for me. It’s our life, children, our story, our reality!

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.

From the day I became a mom in 2008, which I always dreamed of being, I never realized who I was going to become because of motherhood or parenting in general. After learning the facts of what we were facing with my oldest son’s first diagnosis before he was even born, I knew in my own heart that yes he may only live for two seconds. But it would be one of the greatest two seconds of my life. Then, when he overcame all the odds and proved to be the miracle baby, I was going to make every moment count. My journey of motherhood and parenting has always been unique from day one.

I heard some inspiring quotes by Dan Hall recited in the movie “Same Kind of Different as Me.” It really got to me. One of my favorites, for example, was “Our limitation is God’s opportunity.

When you get all the way to end of your rope and there ain’t nothing you can do, that’s when God takes over.” Another was, “I found out everybody’s different — the same kind of different than me.” Still, another was, “But sometimes we has to be thankful for the things that hurt us, cause sometimes God does things that hurt us. But they help somebody else.” For me, I am a mom of a miracle boy whose life has been and is going to be so delicate. But I embrace the opportunity to be thankful, while realizing its okay to have no idea what I’m doing at times.

What I have made of my “different “is that it does hurts sometimes, but I am helping somebody else. My hurt does not defined me or my son, just our reality of the road we all walk down. I believe it is in all the moments of our lives that we learn how to respond and how to live.

Until next time, Stephanie Myers

DID YOU KNOW? October is Dyslexia Awareness Month. More than 30 million adults in the United States have dyslexia.

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But the God of All Grace, who Hath called us unto his eternal glory by Christ Jesus, after that ye have suffered a while, make you perfect, stablish, strengthen, settle you. 1 Peter 5:10

We would love to hear your stories, join our blog, share with us on Facebook or email us! You never know who just might need your help, share your struggles and yet want to celebrate all the joys that life brings.

Parenting Children with Special Needs / Volume 9: Issue 5

PCWSN.com

FEATURES

Sponsored Feature

Infection Control

8 Embracing Family 14

By Emily Goodwin MD, FAAP

18

Kansas City family is integral to son’s support and growth

By Susan Fotovich McCabe

DEPARTMENTS

12

12 Inclusion: Are you guilty of missed Healthy Living

opportunities?

By Debbie Niemann, MBA

18 From Childhood to Adulthood, Parenting Adults with Special Needs

WillowTree Creates a Seamless Transition

20 Back to School 101: Kid’s Corner

Tips for a Successful Year

By Amanda Lynn, RN

21 Test your knowledge of the Interactive Corner

world of special needs.

22 Work is More than a Paycheck Independent Living

By Amy Cox

24 Missouri State Bear POWER Practical Matters

Makes its Debut

By Rachel Heinz

Kansas

One Big

Kansas City takes “all couple approac for one” h

PCWSN.com

ume 9 :

Issue 5 /

PCWSN

.com

Family ROLL UP YOUR SLEE The valu VES e of

On the Cover:

The Doty family of Kansas City enjoys the perks of a big family. Photo by Jaime Russell, Anthem Photography.

City / Vol

work

BACK TO DONE RI SCHOOL GHT

Going the for all chil distance dren

COVER YO UR

Staying

well this

fall

NOSE

KC’s On ly Pediat

PCWSN DEBU WITH SP TS ADULTS ric Heal ECIAL NE th and Se EDS! rvices Re source Gu ide

24 IN EVERY ISSUE

4 Publisher’s Letter 27 Resource Guide

Turning life’s ugly moments into inspiration.

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

Volume 9: Issue 5 / Parenting Children with Special Needs

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

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

Upcoming Fundraising Event

WineRaiser

Masquerade Ball November 3rd • 6pm - Midnight

Arrowhead Stadium • 1 Arrowhead Drive, Kansas City

Volume 9 • Issue 5 Publisher Stephanie Myers Stephanie@PCWSN.com Editor Susan Fotovich McCabe Susan@PCWSN.com Art Director Stephanie Biddle Design@pcwsn.com Business Development Devin Morris Devin@PCWSN.com Advertising Darcie Jones Darcie@PCWSN.com Contact us at 30905 E. Stony Point School Road Grain Valley, MO 64029 816-217-7486 ISSN 2168-1449

Registration is required and limited. Tickets are 100.00 per person and available until October 15th or until sold out.

Website PCWSN.com

This is a special invitation for YOU! As you are a huge part of the difference we make through Parenting Children with Special Needs, Inc. (PCWSN) Charity! “An evening of mystery and intrigue. Where identities are concealed, Inhibitions are left behind & the most intimate of desires set free.” All while making a difference for Parenting Children with Special Needs Charity at an evening you and your friends will never forget at the Annual WineRaiser, Masquerade Ball!

Social Media Facebook.com/pcwsn

Includes special dining experience and drinks at Arrowhead Stadium, casino entertainment with LIVE races, live music featuring Lost Wax and Party it Up Entertainment, great auction items, plus more to make a magical evening Masquerade Ball style! Come dressed to impress and make a difference one child at a time with PCWSN, Charity!

SPONSORSHIP LINK

EVENT TICKETS

https://goo.gl/yDN4Hi

also available by contacting us at pcwsnkc@gmail.com

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

Federal Tax Exempt Organization: EIN 45-4579175

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 9: Issue 5

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

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

PCWSN.com

loving-care for kids BIG and small

Celebrating 15 years of tours!!

Special Journeys is a company dedicated to providing adult individuals with special needs the opportunity to travel. We offer approximately 26 trips a year where our experienced tour leaders and staff take care of all your needs, including lodging, dining, attractions and daily cares. Special Journeys will even pick you up and drop you off at your specified location in Missouri, Kansas, Iowa, Nebraska or South Dakota!

Contact us at (913) 227-0044 or visit online at www.specialjourneys.org for more information on our exciting trips!

PCWSN.com

Volume 9: Issue 5 / Parenting Children with Special Needs

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SPONSORED

Feature

Infection Control

By Emily Goodwin MD, FAAP

The most important way to prevent spread of infection is good hand-washing.

G

etting sick is no fun.

Sometimes illness can feel unavoidable. But there are definitely some things you can do to minimize risk of infection this coming cold and flu season.

You may have seen your health care providers wear masks, gloves or gowns.

How do they decide when to wear them?

Should you wear them too? The American Academy of Pediatrics recently updated 8

a policy statement to prevent and control infections in the clinic or ambulatory (noninpatient) setting and it helps answer some of these questions.

Infection control strategies from the Center for Disease Control are based on the way an illness spreads, including: Airborne route, Body fluid, Contact and Droplets. Airborne illnesses (chicken pox or measles) spread far in the air through tiny particles after someone infected coughs, sneezes or talks.

Parenting Children with Special Needs / Volume 9: Issue 5

Droplets spread a shorter distance (less than 6 feet) in the air through sprays or splashes when an infected person sneezes or coughs droplets (pertussis, influenza).

Body fluids can also spread illness, as can contact with contaminated hands, wounds or surfaces (staph aureus, RSV, scabies, hand foot and mouth disease, c-difficile).

Based on the symptoms your child has, your health care team should take appropriate precautions to limit spread PCWSN.com

of illness. This may include wearing masks, gowns, gloves or eye protection known as personal protective equipment (PPE). The type of PPE depends on the suspected type of illness and how it is spread. Masks are required if it is a droplet or airborne illness and specialized negative pressure rooms are required when airborne illness is suspected. Gowns and gloves are needed for illness spread by contact.

The most important way to prevent spread of infection is good hand-washing. When hands are visibly soiled or for conditions like norovirus (highly contagious vomiting and diarrhea famous for ruining cruises) or c-difficile, soap and water should be used. If you do not see your health care provider clean his or her hands with hand sanitizer or soap and water, please kindly ask him or her to do so before examining your child.

If you are sitting near a child coughing in the waiting room, feel free to ask for masks to wear and try to stay at least 6 feet away when possible. If your child is immunocompromised, a newborn or medically fragile, ask your healthcare provider if they have specific precautions that can be taken or availability of rapid rooming, sick and well waiting areas or separate entrances.

Likewise, if your child is ill or coughing, ask for a mask for them to wear to prevent spread to others. Teach your children, to sneeze or cough into a tissue or elbow and when and how to wash hands.

The same principles apply if one child or person is sick in your home and others are not. Washing hands and keeping a bit of

distance where possible between those ill and not can limit spread of infection.

One reason I love pediatrics is giving guidance to prevent illness and promote safe and healthy habits to prevent injuries, accidents and disease when possible. What can you do to help prevent infections?

If you are sitting near a child coughing in the waiting room, feel free to ask for masks to wear and try to stay at least 6 feet away when possible.

1. Practice good hand washing and insist others do too. a. Use alcohol based hand sanitizer and rub until dry or wash with soap and water, rubbing vigorously for at 15 to 20 seconds and use a disposable towel to dry.

2. As my Infectious disease instructor from medical school wisely said, “if it is wet and not yours, don’t touch it!”

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Volume 9: Issue 5 / Parenting Children with Special Needs

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a. A s a parent, caring for an ill child includes exposure — You do not need to wear a hazmat suitat home around your child, but definitely wash hands often and clean and sanitize surfaces (especially kitchen and bathroom) and toys to help limit spread b. Be sure to keep bleach and all cleaning chemicals locked and out of the reach of children.

3. Limit sharing drinks and utensils.

4. Consider getting the flu shot for your child and all close contacts.

Although it is not 100 percent effective, it is the best prevention available and reduces risk of complications or death from flu.

The flu vaccine comes out usually by October and the earlier it is given, the better.

5. Be sure your child receives all childhood vaccines on time to help prevent serious illness from diseases that are more common, including measles and pertussis (whooping cough). a. M ake sure you and visitors/grandparents also up to date on vaccines including TdaP (tetanus with pertussis booster), especially if you have a new baby at home.

6. Wash hands, before eating, touching your face, after blowing your nose/coughing, after using the restroom or changing diapers, etc 7. If not a true emergency, consult with your primary care provider before heading to urgent care or the emergency room. Sometimes

they can see you in clinic (depending on the concern and timing) and may minimize waiting time (and exposure) in a busy urgent care or emergency room.

8. If you do head to urgent care, see if there is an option to wait elsewhere. Many hospitals including Children’s Mercy Urgent Cares allow you to view current wait times and “save your spot” in line so you can do most of the waiting at home.

9. Be thoughtful about what toys your children touch in the waiting rooms or in community-shared spaces, especially if they put toys in their mouth. Consider bringing your own (washable) toys.

These principles apply everywhere. Wipe your cart at the grocery store, minimize exposure to big crowds during flu season, especially if your child is at high risk for infections, ask visitors to your home who are ill to keep their distance or visit when they are better, talk to your child’s health care provider if you have questions about your child’s risk of infection, vaccines, ways to prevent illness or if you have other concerns.

Emily Goodwin, M.D., 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 Medical Center and has interests in education for both families and medical trainees.

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

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10 Parenting Children with Special Needs / Volume 9: Issue 5

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Volume 9: Issue 5 / Parenting Children with Special Needs 11

HEALTHY

Living

By Debbie Niemann, MBA

INCLUSION

Are you guilty of missed opportunities?

W

hat does true inclusion look like? How do we support our children with disabilities safely in a “typical” setting?

These were questions I asked myself a couple years ago when Cecilia was making the leap from elementary to middle school.

I knew having an adult constantly hovering nearby would be social death for her. Yet, with her severe dysautonomia (that can be life threatening at times), significant vision impairment, inability to react timely to moving objects and limited verbal skills, an adult needed to be with her at all times.

At the same time, Cecilia was acting just like any other tween — wanting more independence, becoming frustrated with hovering adults and revolting against the adults who controlled her life.

I couldn’t blame her. I remember being dropped off by my parents with my friends in public places. I stayed home alone for a few hours and babysat other kids, as well

as my younger siblings. While Cecilia has the physical skills of an infant, mentally and cognitively she is very close to her sameaged peers. I knew in middle school, the last thing a kid wanted to be was different.

I started with her educational team. She may be in special education and spend time in a more restrictive classroom a few hours a day, but the other students in special education were not only classmates. First and foremost, she was a 6th grader. The special education students and peer models wore special t-shirts. But no one else in the school or her class wore them. Special education is not a club. Cecilia did not need a “special” shirt and a “special” picture put into the yearbook to point out she had “special needs.” The wheelchair signaled that.

With good intentions, her special education teacher created “special” outings to promote social interactions outside of school for students with special needs. A few peer models attended. I wondered how these

12 Parenting Children with Special Needs / Volume 9: Issue 5

outings would foster true friendships for Cecilia when the only time you see this person outside of school is for extra credit and community service. I opted to not have her attend. At lunch, I told her para to sit across the cafeteria with the rest of the staff.

She could watch her without sitting next to her and her friends. I reminded her para that she was there as a support, not a peer or friend. I reminded Cecilia’s teachers in the general education classes that the para was not to be her partner when students grouped or paired up. Cecilia would have fellow classmates as her partners, just like everyone else. Again, I asked the para to sit across the classroom, not next to Cecilia.

Finally, I reflected on how friendships outside of school are fostered. It’s through extracurricular activities, not the “special” kind for students with disabilities. I knew how much Cecilia loved cheering for teammates and her siblings through the years, so I reached out to school administration and the staff to find out how accommodations could PCWSN.com

next class. The para walked behind and kept them just in eyesight. Other students wanted to be the one to carry her backpack or hand her pompons. They weren’t doing it out of pity nor for extra credit or community service hours. They did it because this was a teammate and a friend.

be made so Cecilia could participate. Even better, none of her friends from her tight knit group of elementary school went out for the team. This allowed Cecilia a chance to show other students who she was.

Students who didn’t previously know her quickly realized Cecilia was “all there.”

She was simply trapped inside a body that didn’t work like theirs. She would belly laugh and sometimes even let out a snort at their sarcasm and jokes. While she may not have communicated much with words, she very clearly spoke with eye gaze and facial expressions. Soon, cheerleaders were walking up and asking to push her to her

Not long after this, text messages and phone calls came from friends asking what she was up to on the weekends with invitations to join the group. I found myself dropping Cecilia off at the movie theatre, bowling and the pool with friends. Often I sent a care giver to be onsite or I stayed nearby, just in case. But with cell phones and the development of deep friendships, it became apparent her friends knew her well.

True inclusion is proven not by what happens within the walls of the school, but rather outside of the educational structure.

It requires a parent to loosen the reigns and get rid of the protective bubble. A parent must let go of some control to facilitate social growth in a child with disabilities. I know I have done this readily with my other two children, but I always was over-protective

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of Cecilia. Regardless of the safeguards I have in place for my other two children, I cannot protect them from every horrible thing that potentially could happen. The same is true for Cecilia. For all three of my kids, the freedoms I have allowed have occurred gradually over time, based on age and maturity. Is it scary for me? Yes. Have my children continued to grow and surprise me with these opportunities? Yes. I have touted inclusion for years and demanded it of others for Cecilia, but I finally had to look at myself and say, “Are you promoting or hindering inclusion for Cecilia?”

Debbie Niemann is mom to Cecilia, Lucy and Loren. Her family resides in Overland Park. Cecilia has cerebral palsy, relies on a wheelchair and others for all forms of mobility, and suffers from severe dysautonomia. The family has traveled the U.S., promoting inclusion and breaking down barriers for people with disabilities.

Debbie is a financial representative at Northwestern Mutual and specializes in special needs planning.

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For more information about our Outpatient Therapy services, please contact Jean Hoyt, lscsw, rpt at (913) 557-4000 or jhoyt@lakemaryctr.org

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PCWSN.com

Volume 9: Issue 5 / Parenting Children with Special Needs 13

EMBRACING FAMILY

14 Parenting Children with Special Needs / Volume 9: Issue 5

PCWSN.com

Kansas City family is integral to son’s support and growth

By Susan Fotovich McCabe

Photography Jaime Russell

W

With a big family and a busy schedule, every child in the Doty family needs attention. Brad and Teresa Doty of Kansas City, Missouri juggle the ups and downs of family life relatively smoothly with their six children — Matthew, 18, Alex, 15, Elena, 12, Thomas, 10, George, 8 and Jack 1.

This past August, they experienced “a first” — sending Matthew off to college at Creighton University in Omaha. Yet, there’s still plenty to do at home, including meeting the needs of Alex who was diagnosed with a pervasive development disorder (PDD) and a seizure disorder at age 3.

“We used to spend more time adapting and integrating Alex’s needs into the family routine, but now we don’t have to do that as much,” Teresa said.

“His siblings won’t let him get away with special treatment. He’s learned to roll with things.”

Today, Alex “rolls” with trips to Worlds of Fun, weekends at the lake, movies, trampoline parks, a full spiritual life with the family’s church, St. Thomas More in Kansas City and so many other activities. But it wasn’t always so easy. Teresa and the kids spent several years commuting to Chicago and San Francisco in order for Alex to see a neurologist to treat his seizures, while Brad stayed in Kansas City to oversee his Independence, Missouri chiropractic practice, Back and Neck Pain Center. Teresa and the kids even spent three months in Peachtree City, Georgia to access support from the Atlanta-area Brain Balance. The Doty’s are now part owners of Kansas City’s Brain Balance location, where Alex receives additional academic and organizational support.

Likewise, school was difficult for Alex for a number of years. While attending the public school system, Alex struggled verbally, with staying on task and coping with the challenges of integrating into the general education curriculum and population.

“I was getting calls almost every day to pick him up because he was just shutting down,” Teresa said.

Eventually, Teresa discovered Sherwood Autism Center, where Alex now attends school and receives services through its special education program.

The curriculum is designed to support students in acquiring and improving developmental skills in critical areas, such as socialization, language and communication, daily living activities, community inclusion and functional academics. While some students return to the public school setting after gaining new skills at Sherwood, Teresa says Alex will continue to attend its special education program.

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Volume 9: Issue 5 / Parenting Children with Special Needs 15

“Alex is calmer and his anxiety has dropped significantly,” Teresa said. “The school’s sensory-friendly climate allowed him to finally start learning. After just one year, he is a different kid.”

Beyond the classroom, Alex engages in social groups and participates in Blue Valley Special Olympics sports. And then, of course, there’s the big Doty family.

“We are extremely blessed to have six kids.

We have an entire social network built right into our home and the neighborhood,” Teresa said. “Alex has just blossomed. I used to not be able to take him to parties because it bothered him. Now I can. He’s a happy kid.”

Teresa also credits her family’s biomedical approach to Alex’s physical health for his academic and functional success. Brad oversees his chiropractic health, while Teresa devotes attention to his diet.

“Once we embraced a healthy brain, gut and body, nothing got in the way of his learning,” she said.

Teresa has become one of Sherwood’s biggest fans. As such, she regularly volunteers at school and recently chaired Sherwood’s inaugural Beat the Blues fundraiser. The February cocktail gala raises awareness of Autism and funds for the organization. Beat the Blues 2019 is scheduled for February 16.

Sherwood Autism Center provides special education services through age 21 and then transitions many individuals into jobs and community programs. The Doty’s will have Alex attend Sherwood through the age of 21, thanks to the success he has already achieved.

Of course, Brad and Teresa stay equally busy caring for a baby, as well as keeping up with school and extracurricular activities for Elena, who is involved in competitive dance and Thomas and George, who compete in multiple sports. All three attend St. Thomas More School. Even Jack is busy, Teresa says.

There’s never a dull moment with a big family.

“Jack likes to test Alex’s patience by running up and turning off his Xbox while he’s playing. Years ago, Alex would have had a meltdown, but now he just says, ‘Jack you are bothering me’ and he picks him up and brings him to mom,” she said. “He has done incredibly well with the baby and even tries to help care for him. I credit Sherwood’s intervention with helping him handle a toddler.

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PCWSN.com

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

Alejandro, age 7 Patient since 2011

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

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

Volume 9: Issue 5 / Parenting Children with Special Needs 17

PARENTING ADULTS

with Special Needs

By Amanda Davidson

From Childhood to Adulthood, WillowTree Creates a Seamless Transition

S

chool-aged children receive special education services as they grow. But adults with special needs require assistance, as well. WillowTree Supports offers adults with special needs a number of opportunities. WillowTree began as a spark of an idea fueled by an obvious need in the special needs community — the opportunity to experience the same human rights, responsibilities and opportunities as others in society. This includes the ability to develop meaningful relationships, find their valuable role in their community and experience their own personal growth in the process.

WillowTree co-founder Patty Long spent over 30 years as a special educator helping children with special needs thrive and grow into many of the skills they need for a successful and fulfilling life. There was a gap, though, between the end of the school-aged program and adulthood. This results in many adults exiting the programs they grew up with without a way to use the skills they learned. The lack of valuable options for community involvement caused many of these individuals to experience a stagnation of development and sometimes a loss of what was previously learned.

18 Parenting Children with Special Needs / Volume 9: Issue 5

In 2014, Long partnered with Connie Morris to launch WillowTree.

Morris had over 35 years of experience in the healthcare field working with countless people of all different physical and developmental abilities. They opened the doors to WillowTree with the commitment to give every individual with a disability nothing less than a rich and inclusive adult life.

So what does a rich, meaningful life of community inclusion look like? WillowTree has a variety of ways to bring these aspects to life.

When you walk into the WillowTree Supports day service, you’re welcomed by the sound of the door chime reminiscent of church bells and at least one smiling face eager to say hello and brighten your day. You might also be greeted by one of WillowTree’s tiny and tough canine friends.

Of the roughly 50 adults with differently abled abilities that receive services during the day, every one of them comes to day service ready to engage and fulfill personal development goals. One of these goals is to complete a daily chore at some point in the day.

This includes prepping lunch in the kitchen, sweeping the floors, washing the windows or taking out trash and recycling. These daily PCWSN.com

chores reflect many of the house keeping responsibilities that come with independent living.

Providing meaningful employment opportunities is a passionate focus at WillowTree as it is a chance to use valuable skills and take an active role in personal accomplishments. WillowTree has partnered with two community businesses to offer part time work for pay during day service hours, which plays a huge part in finding a valuable role in the community.

Other chances for community involvement include delivering Meals on Wheels everyday and visiting retirement homes throughout the week.

WillowTree also offers residential services to adults who are ready to venture onto the path to supported living. We believe a home is an essential part of a person’s life. It’s a personal anchor in our lives where we feel secure and have a sense of pride.

In 2015, WillowTree created the WillowTree Support Foundation to better

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financially support the services it provides and fill needs of individuals in the community with healthcare products and equipment that are not always available to those who need it. In the past, it has funded wheelchairs, walkers, personal hygiene items and many other supplies necessary to many lives.

WillowTree is making a difference in so many lives. Caroline is a young woman who has been with WillowTree for several years, enrolled in both its supported residential and day services.

“I usually wake up every day around 6:30 a.m. I take a shower and get ready for the day without any assistance from staff, though I do need staff to remove my roommate’s shower chair. After that, I get ready for the day and get dressed independently. I head downstairs to make breakfast which is normally toast, cereal or a bagel, though sometimes my staff will make a home cooked breakfast like pancakes or cinnamon rolls. After

breakfast I finish getting ready and have some free time while staff prepares and hands out morning medicines. Around 7:30 a.m., day service staff picks up the residential individuals and brings them to WillowTree. When I arrive at WillowTree, the first thing I do is begin filing time sheets,” Caroline said. “We have Work for Pay at 10 a.m. I really enjoy taping and cutting bubble wrap for Amazon. After Work for Pay we have lunch and free time. Later, I start doing my chore. I don’t mind doing any chore I’m assigned.”

The remainder of Caroline’s day is equally busy. For Caroline and others, WillowTree Supports dreams have come to fruition and are continuing to surpass what everyone committed to those dreams could have imagined. All lives are enriched when people work together to create an inclusive community where everyone has the right to an empowered life.

Volume 9: Issue 5 / Parenting Children with Special Needs 19

KID’S

Corner

By Amanda Lynn, RN, Craig HomeCare

Back to School 101: Tips for a Successful Year

G

oing back to school is a time of excitement, but also apprehension for kids and parents — even more so if your child is medically fragile. You want your child to have the education and socialization that come from attending school. However, you worry if that care will be provided. If your child can’t go to school, you’re concerned that he or she will miss out.

As a former school nurse and current branch administrator for Craig HomeCare, these are familiar concerns. Here are practical tips for making this school year a success.

Advocate and collaborate

The key to success is working as a team with all those who will teach and care for your child. It’s extremely important to educate teachers and school nurses on: • What procedures must be done during the school day • What to look for in your child to alert them to a possible emergency • What types of forms need to be completed and medications filled prior to school starting One of the things I most appreciated as a school nurse was when parents would call me and provide a brief rundown before the start of the school year. Most school nurses and teachers start a few weeks prior to school, so that’s a good time to connect.

Even kids who have the exact same diagnosis are all different, so making staff aware of what to expect with your child is effective and helpful.

Common challenges and solutions

backpack and folders can go a long way in establishing that.

Being pulled out of class for procedures can make it difficult for medically fragile children to learn. Work with your child’s teacher and school nurse to eliminate as many distractions as possible. Plan your child’s procedures during natural transition periods, such as restroom breaks, heading to lunch or recess. We also know that the world isn’t always a kind place. Empower your child to answer questions about his or her condition from peers. Let them be involved with one another to educate everyone in the process.

Helping homebound students feel part of back to school

Set your child up for success by setting a routine

Craig HomeCare partners with families and schools for client success

Implementing the school routine at least a month ahead of time is important for all kids, but especially those with cognitive disabilities. Talk with your child about what’s coming and what to expect during the school day. Even if he or she is going to have homebound services, it’s important to stick to a routine.

Back to school supplies and equipment

Medically fragile children need to have an emergency bag with extra supplies, such as their g-tube, emergency trachs and suction catheters. Adaptive supplies, such as tablets, will allow children to work better and are a great option. In some cases, schools supply these.

Your child should also have the “typical” school supplies used by his or her peers.

Just like any other child, medically fragile children need and deserve the most typical school experience possible. A colorful

20 Parenting Children with Special Needs / Volume 9: Issue 5

Even if your child can’t attend school, take him or her shopping with the rest of the family to pick out school supplies and school clothes. It’s important to share that excitement. One month prior to the start of school, talk with your child about his or her new schedule. Starting school-like activities, such as nightly reading and flash cards will help him or her feel like part of the big picture.

Our in-home pediatric nurses act as caring partners with parents to meet educational goals. They are there to advocate for the client if he or she is learning too quickly or not learning quickly enough. In some cases, our nurses even attend school with their clients.

Education and the ability to socialize is extremely important. The best way to learn is from and through each other. School allows medically fragile children their childhood—the chance to be a kid.

Amanda Lynn is a nurse with Craig HomeCare who believes in the mission of the company and supports its dedication to providing the children it serve with the best possible care Craig HomeCare can provide.

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INTERACTIVE

Corner

Try your hand at finding words that are common for families raising children with special needs. Look forward, backward and diagonally Parenting Styles Word Search - WordMint to see if you can spot them all.

9/6/2018

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Parenting Styles

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Volume 9: Issue 4 / Parenting Children with Special Needs 21

INDEPENDENT

Living

By Amy Cox

Work is More than a Paycheck

T

hinking back over my years of work, I consider all the decision making that went into choosing which jobs and what career path would be best for me. Work really is a very complex decision with many implications in our lives. Work is definitely more than a paycheck for each of us. For individuals with special needs, work is no less complex, no less important. In many aspects, work can hold a higher importance for individuals that may have limited access to their community and to opportunities to create relationships.

What shall I do?

The first step toward work is assessing skills, personality, needs and interests in order to find the right fit. For individuals with special needs, this is a very important step in order to be successful in the work environment. Many adults with special needs have the skills to do the work for which they applied, but may need additional supports with some of the soft skills that are necessary to be successful in the work environment, including managing work relationships and managing policies, procedures and paperwork. Communicating reasonable accommodations that are necessary to their success or advocating for “job carving�1 may be something the individual can do on their own. Or, it may be something they need the support of an employment service, such as DPI Employment Connections, in order to be successful in the work environment.

With or without additional supports, finding the right work match is critical to being successful and feeling good about the work the individual is doing.

Work is being valued

We all want to feel valued in the workplace. Individuals with special needs are no different. Everyone wants to feel like they are part of a team and that their role on that team is moving the entire business forward. This is where finding the right employment is critical. Ensuring the individual has the necessary skills to perform the job or can acquire them on the job, finding an environment that supports and recognizes the contributions of persons with special needs and having management that models healthy supports for individuals with special needs in the work environment, all lend to the feeling of being successful and 22 Parenting Children with Special Needs / Volume 9: Issue 5

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being valued at work. For an individual with special needs, being treated like all other employees and having the same expectations for success, regular reviews and opportunities for advancements are also important in feeling valued.

individuals with special needs, being in an environment where they can connect with others, both co-workers and perhaps customers, has an enormous impact on their overall health and wellness.

Work is connection

I have heard from so many individuals that working with someone with special needs has positively impacted their life, as well. Working with someone with special needs allows them to develop the tools to be supportive, not only of that person at work, but also with other individuals in the community. Many people report feeling more competent in creating relationships with persons with special needs after having developed the skills to do so at their place of employment.

The school system has really made great strides in increasing connections between individuals with special needs and their typical peers. This has led to many great outcomes for everyone in the school system. High school graduation is a time of great change, and for individuals having special needs, it can also be a time when they disconnect from peers.

Many peers will go off to college or begin working in the community, while some individuals with special needs may not be able to accomplish those things as easily. Work is an important connection point. Outside of the school system and churches, work is the greatest connection point in an adult’s life and is where they spend a great deal of their time. For

Work is impact

Persons with special needs continue to have more opportunities to be valued in a wide variety of workplaces. Everyone in the community can help individuals feel valued and supported in these roles that are so much more than a paycheck.

Griffin Hammis Associates, GriffinHammis.com: Job carving is the act of analyzing work duties performed in a given job and identifying specific tasks that might be assigned to an employee with severe disabilities. While full-time employment is certainly a reasonable outcome, job carving, or job creation, is typically utilized with individuals in Supported Employment who, for a variety of reasons, including physical disability, psychiatric illness, intellectual capacity, medical fragility, available supports and choice, may not be in the market for full-time employment (Griffin & Winter, 1988).

1

Amy Cox is Developing Potential’s Capital Campaign Development Director. She oversees DPI’s presence in the communities in which they provide services, also advocating and networking for the Community Employment Department.

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Volume 9: Issue 5 / Parenting Children with Special Needs 23

PRACTICAL

Matters

By Rachel Heinz

Missouri State Bear POWER Makes its Debut

C

urrently, there are over 270 programs within higher education settings across the country for students with intellectual and developmental disabilities (IDD), and starting in January, a new inclusive program will start at Missouri State University in Springfield, Missouri.

developmental disabilities. The program was created to offer a post-secondary education opportunity for students transitioning out of high school. Bear POWER is a Comprehensive Transition Program (CTP) approved by the United States Department of Education and is listed on thinkcollege.net.

Known as Bear POWER (Promoting Opportunities for Work, Education and Resilience), the program is a two-and-ahalf-year (five semester) inclusive college program for students with intellectual and

Students will live on campus while attending college courses and will experience learning both in academic and social settings. Bear Blazers are student mentors who provide a “circle-of-support”

24 Parenting Children with Special Needs / Volume 9: Issue 5

to each Bear POWER student with a fiveto-one ratio. Within the Bear POWER program are four pillars with a major focus on goal-setting and learning outcomes.

The Bear POWER program is structured and centered on employment goals and focused on job readiness. The ultimate goal of the program is to transition students into meaningful jobs following graduation from college. All Bear POWER students who complete the program will have the opportunity to walk in a graduation ceremony with their peers.

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The Four Pillars of Bear POWER include:

Academic Students engage in the equivalent of 12 credit hours per semester through the combination of audited courses, support sessions and internships. They choose an “area of concentration” using personcentered planning methods. After completion of five semesters in the program, students will get a Bear POWER certificate and walk in a graduation ceremony with their peers.

Social Bear Blazers are Missouri State student volunteers who provide a “circle of support” and integration within academic and social settings for each Bear POWER student. Mentors provide support in the areas of academic, social, health and wellness.

Independent Living It is a requirement for students to live on campus during their enrollment in the program. This provides them with countless opportunities to learn independent living skills. Through hands on experiences they will learn time management, basic cooking, cleaning and chores while living in a shared space.

Job Readiness Career guidance and support is a critical part of the Bear POWER curriculum. Students will create a Person Centered Plan and identify their interests in employment areas upon graduation.

Support sessions will assist students in developing a resume and practicing interview skills. Students will also be required to participate in internship experiences, both on campus and within the community.

A total of eight students will be in the first Bear POWER cohort, and each January a new cohort of up to 10 students will start in the program. Bear POWER has its own admissions process which consists of an application, interview with student and parent/ support person(s) and the Bear POWER admissions committee and attendance at the annual Bear POWER Summer Leadership Retreat. Students stay on Missouri State campus for three days and two nights to have inclusive academic and social experiences to see if college is a good fit for them.

Bear POWER Admissions criteria, checklist and a timeline can be found at missouristate.edu/bearpower.

Email your questions to bearpower@missouristate.edu and “like” us on Facebook for program updates at facebook.com/msubearpower.

Because the Bear POWER program is an approved Comprehensive Transition Program (CTP), students can qualify for federal financial aid if they meet all criteria. Bear POWER also accepts scholarships and has private scholarship opportunities available for students in the program. Program cost and scholarship opportunities are listed on our website missouristate.edu/bearpower.

Within an inclusive higher education setting, students with intellectual disabilities positively impact other students. Following our first Bear POWER Leadership Retreat, we had a student volunteer say that being involved and getting to know future Bear POWER students has been her favorite experience at Missouri State. The benefits of having students with intellectual disabilities on college campuses creates a “ripple effect,” generating higher expectations for individuals with intellectual disabilities, increased opportunity for inclusion in other settings, an appreciation of diversity and acceptance and more compassion and understanding.

Missouri State University is excited to offer this opportunity and to be part of a shift in higher education toward the inclusion of students with intellectual disabilities.

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Volume 9: Issue 5 / Parenting Children with Special Needs 25

9 13. 2 27. 0 4 4 0 Kansas City’s only full service, exclusively pediatric medical equipment provider.

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Our equipment, training, and follow-up are all tailored for babies, children, and their families. We know that each child is unique, so we adapt to support your individual needs, while keeping your out of pocket costs in mind.

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• Oxygen Administration They know who they are serving and they do it with precision and attention to detail. They are • Oximetry Monitoring truly dependable. They care and it shows in everything they do!

Thank you to the great team at Cherub!”

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26 Parenting Children with Special Needs / Volume 9: Issue 5

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ResourceGuide

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doctorspracticinglaw.com Asthma/Allergy

Allergy and Asthma Network Mothers of Asthmatics Strives to end asthma deaths and suffering on a national level. • aanma.org • 800.878.4403 Asthma and Allergy Foundation of America Improves the quality of life for people with asthma and allergic diseases through education, advocacy and research. • aafa.org • 800.727.8462 The Food Allergy Network (FAN) Raises public awareness, provides advocacy and education, advances research on behalf of those affected by food allergies and anaphylaxis • foodallergy.org • 800.929.4040

Arthrogryposis/Arthrogryposis Multiplex Congenita

Provides and encourages understanding and mutual support among anyone affected with the diagnosis of arthrogryposis multiplex congenita (AMC) • amcsupport.org • 800.929.4040

Attention Deficit Disorder

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 Alphabet Soup Support Group Helps parents raise children with disorders like ADHD, LD, autism and more. Meets monthly at the Presbyterian Church of Stanley, in Overland Park. Free childcare. • helpersinc.org • 913.402.0533 Behavioral Health Specialist 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.

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Includes easy.to.use software and personal support. Contact Avner Stern, PhD. At913.906.9559, ext.106 • Bhsks.com • 913.906.9559, ext.106 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

Autism

Autism Society of the Heartland Provides support, education and advocacy for the autism community. • asaheartland.org • 913.706.0042 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 The Behavior Project An early intervention clinic serving first diagnosis to age 7, located just minutes of HWY 69 in south Overland Park, Kansas. Specializing in individualized ABA programming, your little one will get the therapy, education, and support needed to create a thriving, safe and fun-filled life.

• www.thebehaviorproject.com • 913-257-5185 Successful Sounds 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.

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. • milestonesacademykc.com • 816.501.5138

Batten Disease

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

• bdsra.org • (800) 448.4570

Brain Injury

Brain Injury Association of 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 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 ofeach 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. • biaks.org • 800.444.6443

Brain Tumor

American Brain Tumor Association Strives to eliminate brain tumors through research and to meet the needs of brain tumor patients and their families. • abta.org • 800.886.2282 Pediatric Brain Tumor Foundation We offer free educational resources about brain tumors, a toolkit for newly diagnosed families, college scholarships and much more • curethekids.org • 800.253.6530

Volume 9: Issue 5 / Parenting Children with Special Needs 27

ResourceGuide

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National Brain Tumor Society Comprehensive resource (research and patient services) for patients, families, caregivers, researchers, and medical professionals. • braintumor.org • 617 924 9997

Cancer/Leukemia/Lymphoma

Leukemia & Lymphoma Society Mid.America Chapter Leukemia & Lymphoma Society exists to find cures and ensure access to treatments for blood cancer patients. We are the voice for all blood cancer patients and we work to ensure access to treatments for all blood cancer patients. • lls.org • 800.955.4572

Cerebral Palsy

4MyChild Provides a comprehensive resource and compassionate voice for all things related to caring for a child with Cerebral Palsy, Erb’s Palsy, and other neurological injuries. • cerebralpalsy.org • 800.692.4453

Crohn’s & Colitis

Crohn’s & colitis Foundation of America (Kansas City) CCFA is a nonprofit, volunteer driven organization dedicated to finding to cure for Crohn’s Disease and ulcerative colitis. • ccfa.org • 314.863.4747

Cleft Palate

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

• aboutfaceusa.org • 800.665.3223

Daycare and Day Services

Special Journeys, Day Programs Special Journeys is a company dedicated to providing adult individuals with special needs the opportunity to travel. We offer approximately 26 trips a year where our experienced tour leaders and staff take care of all your needs, including lodging, dining, attractions and daily cares.

Special Journeys will even pick you up and drop you off at your specified location in Missouri, Kansas, Iowa, Nebraska or South Dakota! Call or visit online for more information on our exciting trips! • www.specialjourneys.org • (913) 227-0044

Disablities

UPC of Greater Kansas City Provide support services to promote Life without limits for people with disabilities. Support groups

for respite care and sib ship meet the first Friday of every month at the Leawood Baptist Church.

• openoptionskc.org • 816.531.4454

Cystic Fibrosis

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

Deaf and Hard of Hearing

Able Hands Interpreting Services Provide interpreting services with flexibility and choice. • ablehands.net • 816.838.4263 American Society of Deaf Children (ASDC) Provide support, encouragement, and information to families with deaf children,supportssign language at home, school and in the community • deafchildren.org • 800.942.2732 Deaf Culture Center and WilliamJ. Marra Museum Community resource. Brings deaf culture to life.

Unites deaf and hearing communities in a common bond of understanding and appreciation. • museumofdeaf.org • 913.782.5808 Missouri Commission on the Deaf and Hard of Hearing Advocates for public policies, regulations and programs to improve the quality and coordination of exsting services for indiviuals with hearing loss. Promotes new services whener necessary. • mcdhh.mo.gov • 573.526.5205 St Joseph Institute for the Deaf We believe every child, everywhere, has the right to select a communication method with their family.

When it’s a Listening and Spoken Language option, St Joseph Institute for the Deaf (SJI) has been helping children with deafness since 1837. Our only job for 182 years has been to teach children to listen, speak and eventually, read. Our world-wide tele therapy program, iHear, provides Listening and Spoken Language education and support for your child, your family and in tandem with your School District.

Look us up on the web to view videos, parent stories, images, and more at our website, Facebook page and Instagram. Call us today to see how we can help your child! • www.sjid.org • 314-918-1369

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

28 Parenting Children with Special Needs / Volume 9: Issue 5

Juvenile Diabetes Research Foundation Kansas City Chapter Strives to find a cure for diabetes and its complications through 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 • 816.478.0253

Down Syndrome

Down Syndrome Guild of Greater Kansas City Provides support and rescourses for individuals with Down Syndrome and their families.

• kcdsg.org • 913.384.4848 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

Dyslexia

Horizon Academy Provides specialized education for students with dyslexia and other diagnosed learning-disabilities (Auditory Processing Disorder, ADD/HD, dyscalculia, dysgraphia) in grades 1-12. Other programs include: tutoring center, summer school, free reading screenings, and professional development opportunities.

Also an accredited instructional program through the Orton-Gillingham Academy of Practitioners & Educators. • Horizon-Academy.org • 913-789-9443

Education

EXCEL (Expanding College for Exceptional Learners) Integrating individuals with intellectual disabilities into the Kansas City community through higher education and a commitment to an inclusive society. • excelkc.org • 816.363.4968 Horizon Academy Provides specialized education for students with dyslexia and other diagnosed learning-disabilities (Auditory Processing Disorder, ADD/HD, dyscalculia, dysgraphia) in grades 1-12. Other programs include: tutoring center, summer school, free reading screenings, and professional development opportunities. Also an accredited instructional program through the Orton-Gillingham Academy of Practitioners & Educators.

• Horizon-Academy.org • 913-789-9443 LeeAnn Britain infant Development Center Serving children with developmental disabilities from birth to six years of age, the Center provides a PCWSN.com

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See ad pages 25 & 26 unique program that involves parents and siblings in the process of therapeutic treatment and education. The Center provides services to any child in need of the program regardless of their family’s ability to pay. • shawneemission.org/lee.ann.britain. infant.development.center • 913.676.2253 Northland Early Education Center Providing education for all children birth to kindergarten and early intervention for children with special needs. • neeckids.org • 816.420.9005 University of Central Missouri THRIVE Program Allowing young adults with intellectual or developmental disabilities to participate in a two.year residential college experience at University of Central Missouri in Warrensburg, building skills to transition from home to independence.

• ucmo.edu/thrive • 660.543.4204 University of Iowa REACH Creating a living.learning campus experience where young adults with multiple learning and cognitive disabilities are empowered to become independent, engaged members of their community. • education.uiowa.edu/reach • 319.384.2127

Epilepsy

CeCe Cares Pediatric Epilepsy Foundation Providing comfort to children diagnosed with Pediatric Epilepsy,helping families burdened with the high cost of medical care and funding research focused on finding a cure. • cececares. org • 312.207.2369 Ext. 225

General

American Association of People with Disabilities Ensuring economic self.sufficiency and political empowerment for the more than 56 million Americans with disabilities. • aapd.com • 880.840.8844 Best Network Creating communities of kindness and inclusion through performing arts, integrating people with and without disabilities. • thebestnetwork.org • 913.663.9936 Catholic Charities of Northeast Kansas Assisting 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 PCWSN.com

Capper Center of Kansas City Enhancing the independence of people with physical disabilities, primarily children through assistive technology, speech therapy and more.

• capper.easterseals.com • 785.272.4060 The Children’s SPOT (Speech, Physical and Occupational Therapy) Giving 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 Collaboration Works Created as a brokerage/distribution service of medical supplies, medical goods and equipment. This service is available free to caregivers, seniors, and individuals with special needs.

• collaborationworksonline.com • 816.421.1305 Community Works, Inc. Assisting people with disabilities in the Kansas City area to live, work and play in the community by setting up support systems that gives control back to the consumer. • communityworksinc. comcommunityworksinc.com • 913.789.9900 Hyperbaric Healing Institute, Inc. Providing hyperbaric oxygen therapy for problem wound care, complications from radiation therapy, As a freestanding clinic, the Hyperbaric Healing Institute 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 Strengthening the well.being of individuals, families and the community by promoting successful social, cultural and economic integration.

• jvskc.org • 816.471.2808 Lakemary Center Providing psychiatric residential treatment for children from both Kansas and Missouri who have severe developmental disabilities and concurrent psychiatric disorders. Lakemary Center also provides supported living, infant toddler programs, Lakemary School and more for children with special needs. • lakemaryctr.org • 913.557.4000 Missouri Developmental Disability Resource Center (MODDRC) Offering a network of support options so that individuals and families are well informed, hope-

ful, connected within their communities and know they are not alone in their experience with disability. • moddrc.org • 800.444.0821 Missouri Parents Act (MPACT) Assisting Missouri parents in their effort to effectively advocate for their children’s educational rights and services. • missouriparentsact.org • 800.743.7634 Special Needs Scouting with Troop.11 in Leawood Offering traditional Scouting and outdoor.themed activities for boys from age 6 through adult and girls from age 14 through adult. From tent camping to scuba demonstrations, our members and families enjoy a wide range of challenging experiences. Contact Bill Haner at bill.haner@sealedair. com to learn more. Families in the Northland and Lee’s Summit can contact Rob Wheeler at rgwmbeck@aol.com or 816.405.3283 for information on possible new troops in those areas. • hoac.bsa.org • 816.405.3283 (Rob Wheeler) TLC for Children and Families Providing opportunities that encourage positive growth and change for children, youth and families while ensuring a safe environment.

• kidstlc.org • 913.764.2887 Turning Point Empowering and transforming the mind, body, and spirit of individuals, families and friends living with serious or chronic physical illness.

• turningpointkc.org • 913.383.8700 Variety – The Children’s Charity of Greater Kansas City Improving the lives and mobility of physically and mentally challenged children. Grants are awarded to select children’s agencies each year, while families are assisted through the Kids On The Go! mobility program, which provides vans with lifts, wheelchairs, adaptive bicycles, prosthetic limbs, medical procedures and more.

• varietykc.org • 913.558.2309 The Whole Person Assisting people with disabilities to live independently and encouraging change within the community to expand opportunities for independent living; providing Independent Living Services to residents of the states of Kansas and Missouri. • thewholeperson.org • 800.878.3037

Volume 9: Issue 5 / Parenting Children with Special Needs 29

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Grief and Hospice Programs

Carousel Pediatric Hospice and Palliative Care and Perinatal Program Providing 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 Assisting families with the resolution of grief from loosing a child at any age. • compassionatefriends.org • 785.748.0079 (Kim Kirk for Douglas County) • 816.229.2642(Barbara Starr for Johnson County)

Hemophilia

Hemophilia Federation of America Assisting and advocating for the bleeding disorders community. • hemophiliafed.org • 800.230.9797 National Hemophilia Foundation (NHF) Striving to find better treatments and cures for bleeding and clotting disorders and to preventing the complications of these disorders through education, advocacy and research. • hemophilia.org • 1.800.42.HANDI

Hydrocephalus

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

Kidney Disease

National Kidney Foundation Serving Kansas and Western Missouri Striving to prevent kidney and urinary tract diseases, improve the health and well.being of individuals and families affected by these diseases, and increase the availability of all organs for transplantation. • kidneyksmo.org • 913.262.1551 PKD Foundation Kansas City Chapter Providing research, education, advocacy, support and awareness for the 12.5 million people around the globe with polycystic kidney disease (PKD).

Support group meetings for the Kansas City area are held regularly from 6 to 8 p.m. at the Kansas City Public Library. • pkdcure.org/kansascitychapter • 816.931.2600

Learning Disabilities

Learning Disabilities Association of America Advocating for individuals with learning disabilities. • ldaamerica.org • 888.300.6710

Marfan Syndrome

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

• marfan.org • 800.8.MARFAN

Multiple Sclerosis

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

Muscular Dystrophy

Muscular Dystrophy Association Fighting against neuromuscular disease.

• mda.org • 913.451.3230 Parent Project Muscular Dystrophy Fighting Duchenne muscular dystrophy by funding research, raising awareness, promoting advocacy, connecting the community, and broadening treatment options. • parentprojectmd.org • 800.714.5437

Parent Groups (General)

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

• parentsasteachers.org • 314.432.4330

Rett Syndrome

International Rett Syndrome Foundation Funding research fund for treatments and a cure for Rett syndrome while enhancing the overall quality of life for those living with Rett syndrome by providing information, programs and services. • rettsyndrome.org • 800.818.7388

30 Parenting Children with Special Needs / Volume 9: Issue 5

Spina Bifida

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

Tourette Syndrome

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

Support group meetings are held in the Kansas City area. • tsa.usa.org

Tumor/Neurofibromatosis

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

• ctf.org • 800.323.7938

Turner Syndrome

Turner Syndrome Society of Kansas City Improving the quality of life for individuals and families affected by Turner Syndrome. This is accomplished through the provision of public and professional awareness about the needs and concerns of individuals with Turner Syndrome and their families. • tsskc.org • 913.220.8177

Vision Impairment

Alphapointe Association for the Blind Provides rehabilitation, education, and employment services for the blind and visually impaired • alphapointe.org • 866.240.1352

Williams Syndrome

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

• williams.syndrome.org • 800.806.1871

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