PCWSN 2018 issue 6

Kansas City / Volume 9 : Issue 6 / PCWSN.com

Better than Normal

Blue Springs Family Sticks Together Through It All

SENSORY INTEGRATION AT HOME Are you doing enough?

TAKE A BREAK What is Respite Care, and How Can It Help You?

AT YOUR SERVICE

Fast Facts about Service Dogs

RESIDENTIAL CARE IN MISSOURI

What You Need to Know

SAVE A LIFE The Signs of Suicide

KC’s Only Pediatric Health and Services Resource Guide

CELEBRATE THEIR INDIVIDUALITY. EMBRACE THEIR FUTURE. From smiles to hobbies to goals, there’s so much that makes your child special. We created the Special Needs Planning Center with your child’s dreams in mind. Our unique approach to special needs planning allows us to set up a strategic path to lead your child to whatever future they want— whether that’s education, financial stability, or true independence.

Learn more at SNPCenter.com

816.741.1100 | snpc@cacu.com Securities and advisory services offered through CommunityAmerica Financial Solutions, LLC (“CAFS”), Member FINRA/SIPC. CAFS is a SEC registered investment advisor. Products offered through CAFS: are not NCUA/NCUSIF or otherwise federally insured, are not guarantees or obligations of the credit union, and may involve investment risk including possible loss of principal. CAFS is a wholly-owned subsidiary of CommunityAmerica Credit Union.

Serving all of Jackson County with program sites in Kansas City, Independence and Lee’s Summit

Developing Potential’s mission is to provide quality services to adults having developmental disabilities and support those individuals to reach his or her fullest potential while achieving an adult, dignified lifestyle.

DPI is a holistic program focused on the mind, body, and spirit in an environment that builds strengths and fosters independence.

Developing Potential, Inc. offers individualized, medical model services through a Day Program, Community Integration Program, and Supported Community Employment Services.

816.525.6000 • developingpotential.org PCWSN.com

Volume 9: Issue 6 / Parenting Children with Special Needs

3

PUBLISHER’S

Letter

Exactly where I am needed treatment. His health was serious and his grave condition required him to be transported by ambulance to a trauma hospital in Chico, California.

We were thankful to get there when we did, yet we were also blinded by what we were walking into with my dad’s illness and the unforeseen ups and downs that followed our arrival.

Surrounded by prayers and support, we hoped to get him stable enough to return him to Kansas City. It was a waiting game - and a time which changed my life forever.

Sometimes, where we need to be is where we least expected to end up. Writing this letter in Chico, California, I am intensely aware of how quickly one’s perspective of tragedy, devastation, and thankfulness can change - just as it did for me.

There are times in our lives we all go through tragedy or devastation. We see it on the news, we hear it on the radio, we are bombarded by it on social media. It is our human nature to feel empathy for those involved in the situations beyond our control.

We usually see someone else’s life flipped inside out. Stories like those are the most heartwrenching: stories of the parent, child or loved one fighting for life and losing the battle, leaving their loved ones behind. Then, there are the stories of families standing in floodwater after a hurricane, the aftermath of terrorism, the rumble of an earthquake, the winds of a tornado or the ashes of a fire. Ultimately we identify with their shock, the brokenness, and feelings of confusion about how to move on. We know their lives as they have previously known them have been lost forever. In those moments, the normalcy they recognize is traded completely for a new and unfamiliar beginning in the aftermath of tragedy.

Yet sometimes the roles are reversed, and amidst our own tragedies, we become the stories others are reading or hearing about - stories of loss, illness, or struggle that take a toll on us or those we love. In the blink of an eye, while gasping for air and searching for sanity, we sometimes realize we have morphed into a survivor amidst the chaos of it all.

I am used to seeing this firsthand with our family.

It seemed normal to me, and has since the day of our son’s first diagnosis. Life is life, and struggle is inevitable. We are all survivors in our own ways.

But some tragedies are still unexpected.

On November 4th, I left my family in the middle of the night to be beside my mom. My dad was out of town in California, and a health scare required he receive immediate emergency 4

Although I thought I could not handle anything else, God really did have me where I was meant to be. The morning of Thursday, November 8th and the days following changed everything for everyone in Chico, and it changed my heart.

That particular morning is a morning I am not likely to forget. While we were sitting bedside with my Dad, there was a glow from in the dark, smoke-filled sky stirring conversation everywhere. The conversations were unsettling, yet little was known at 7am. By 8am it was confirmed there was huge fire nearby in the town of Paradise, California. When we heard the news, the entire town was aflame and everyone was being evacuated. Seeing everything unfold was mind-blowing. There were people leaving everything behind: people who were driving or running to safety with nowhere to go except for the nearest town - Chico.

Everywhere I looked, people were in tears of panic as the fire grew rapidly with no way to contain the two-thousand degree flames. It was just about saving lives; nothing more, nothing less. That was it. Our own panic set in about the same time. I needed a plan too. How were we going to evacuate with my dad if need be?

Where would we go? I could not leave my parents behind with no clue where I was or how to escape.

I just needed to stop, breathe, and begin to cope.

We all cope and heal differently. Everyone offers suggestions, and all we can do is figure out what we can apply to ourselves and accept what we can’t.

In other words, we must decide to get through the moment, survive the day, and let the rest go, repeating the process until our feet stabilize on the ground and our hearts return to our chests.

Everyone seems to know what to do while in survival mode amidst a tragedy. But then what?

What do we do in the moments where we have lost our minds just trying to make sense of what is happening? What do we do when our own emotions feel like too much to handle, yet we are also trying to support and deal with the emotions of our loved ones?

Parenting Children with Special Needs / Volume 9: Issue 6

Here are my suggestions: 1. Stop, slow down and breathe.

2. Pace yourself, rest and take a break.

3. Be patient with yourself.

4. Forgive yourself for not being able to control your situation.

5. Deal with your emotions in a healthy way, and know that your feelings need to be expressed and addressed.

6. Come to terms with the notion that you can only do so much every day, and be okay with that.

7. Be grateful to yourself. You made this journey from completely lost, broken, humiliated, and destroyed. Now, you have a NEW powerful story of life that defines you and who you are.

8. Show yourself the respect and appreciation you deserve while accepting it from others.

9. Keep the faith.

The journey we make back to solid ground after the rug is pulled from beneath us is the journey that ultimately defines human history. Life is full of tragedies and setbacks, but our struggles teach us resilience. They teach us to take the days one breath at a time, to identify our strengths, work on our weaknesses, take control of our lives, and learn the art of giving and receiving love, compassion, and kindness. Regardless of what we are going through or the paths we may be on, we must possess courage and keep faith that there will be a better day ahead of us. God hears our prayers, sees our brokenness, and responds “Thy will be done.” When faced with tragedy, we have the unique opportunity to become who we were always meant to be.

After two weeks, I made it back home from Chico to the people in the world I am most thankful for. Despite being surrounded by devastation, I was keenly aware that for whatever reason, I was meant to be in Chico. I was meant to see that fire, to pray with those families, and share the one thing nothing can take away - love.

It reminds me of part of St. Francis’s Peace Prayer: “Lord, make me an instrument of your peace: where there is hatred, let me sow love; where there is injury, pardon; where there is doubt, faith; where there is despair, hope; where there is darkness, light; where there is sadness, joy.”

Whatever darkness, tragedy, or struggle you may be facing in your life currently, may you find the light amidst darkness, the hope in despair, and the faith in doubt. You are strong enough to overcome whatever is in your path.

Until next time, Stephanie Myers

PCWSN.com

20

FEATURES Sponsored Feature

Suicide Prevention

8 Better than Normal 14

By Emily Goodwin MD, FAAP Blue Springs Family Sticks Together Through It All

By Chance Copeland

18

Sensory Integration at Home Are you doing enough?

By Belinda Peister

18

DEPARTMENTS

12 Take A Break Healthy Living

What is respite care, and how can it help you?

20 At Your Service Kid’s Corner

Fast facts about service dogs

21 Test your knowledge of the Interactive Corner

world of special needs.

22 Transportation is Key Independent Living

By Amy Cox

24 Residential Care in Missouri Practical Matters

By Hannah Bray Clary

Kansas City

/ Volume : 9 Issue 6 / PCW

SN.com

On the Cover: Brian and Kethy Zittlau are thankful for their unique family.

Photos by Kylie Smith

IN EVERY ISSUE

Better than Normal

Blue Sprin gs Fami Together Thro ly Sticks ugh It All

AT YOUR SERVICE

Fast Facts about Service Dogs

SENSORY INTEGRATIO AT HOME N

RESIDENTIA L CARE IN MISSOURI Need

Are you doin

g enough?

What You

TAKE A BR

EAK

What is Resp How Can It ite Care, and Help You?

KC’s Only

PCWSN.com

Pediatric

to Know

SAVE A LIF E

The Signs

Health an

d Services

Resource

4 Publisher’s Letter 27 Resource Guide

Exactly Where I Need To Be. Kansas City’s only pediatric health and services Resource Guide for parents of children with special needs.

of Suicide

Guide

Volume 9: Issue 6 / Parenting Children with Special Needs

5

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

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

Volume 9 • Issue 6 Publisher Stephanie Myers Stephanie@PCWSN.com Editor Chance Copeland pcwsn.editor@gmail.com Art Director Stephanie Biddle Design@pcwsn.com Business Development Devin Morris Devin@PCWSN.com Advertising Darcie Jones Darcie@PCWSN.com Contact us at 30905 E. Stony Point School Road Grain Valley, MO 64029 816-217-7486 ISSN 2168-1449 Website PCWSN.com

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

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

Endorsed by

Visit PCWSN’s Facebook Page & Get Involved!

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

6

DID YOU KNOW? According to the National Organization on Disability, approximately one-fifth of Americans have some form of disability. This equates to over 54 million men and women.

Parenting Children with Special Needs / Volume 9: Issue 6

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 6 / Parenting Children with Special Needs

7

SPONSORED

Feature

Save a Life: The Signs of Suicide

By Emily Goodwin MD, FAAP

S

uicide is the second leading cause of death in young people age 1034 years-old per recent data from the CDC and the numbers are only rising. Anyone, including children with special needs or intellectual disability, can be at risk for depression and suicidal ideation.

• are bullied

• personality changes

• abuse alcohol or drugs

• low self-esteem

• have access to potentially lethal medications or weapons (particularly males with access to a firearm)

• change or decline in performance or grades, talk or wishes about death, and loss of interest in activities-especially those once favored.

Certain children may be more vulnerable to suicidal thoughts than others.

Unfortunately, children or teens with intellectual disabilities are at higher risk for depression, anxiety, abuse, neglect and stigma. Populations at increased risk for suicide can include persons who:

• have recent major life stressors

• identify as LGBQT • are gender non-conforming • have an emotional or behavioral disorder • have a chronic medical condition 8

• have history of suicidal gestures • were recently exposed to suicide (close friend or family member or even exposure on media such as the controversial series “13 Reasons Why”).

What are signs of depression?

Signs can include: • changes in sleep patterns

• changes in weight or appetite • sad or irritable mood

Parenting Children with Special Needs / Volume 9: Issue 6

All teens may show some of these signs, but if they have multiple signs together or signs that are present for more than a few weeks, it is important to seek help.

What do I do if my child is showing these signs? When your child shows signs or symptoms of depression, they may not directly tell you, so it is important you ask. Asking your child if he or she has had thoughts of wanting to die or hurting themselves lets them know you care and creates an opportunity to talk and for your child to get the help they need and deserve.

PCWSN.com

Ask questions such as: 1. Have you wished you weren’t alive anymore?

2. Have you thought about killing yourself?

3. Have you ever done anything to try to kill yourself?

If they share specific thoughts or plans, seek help immediately. Dr. Leslee Belzer, child psychologist at Children’s Mercy, cautions that if your child has an intellectual disability it is important that you only ask these questions if your child’s cognitive level allows them to understand and respond. If you are noticing concerning changes in your child’s behavior, but you are unsure if your child will understand or communicate his or her feelings, talk to your child’s medical provider for further guidance.

Again, take any threat of suicide very seriously and seek emergency medical attention. It is important to make a safety plan for treatment and know who to call. The National Suicide prevention lifeline is a 24/7 free and confidential resource: 1-800-273-TALK (8255) or https://suicidepreventionlifeline.org/ for help and there is even a text hotline through https://www.crisistextline.org: Text HOME to 741741 to reach a trained crisis counselor.

Safety planning is important whenever risk factors are identified but should also be considered as a safety measure in all homes.

Suicide is often an impulsive decision in adolescents and limiting access to things that can be used for self-harm (known as means

restriction) can help ensure overall safety at home. This can include but is not limited to medications, alcohol, cleaning supplies, knives, sharps (razors), ropes, and especially firearms.

These items should be under lock and key or out of the home for safety. Suicide by hanging and by firearm are the most common methods. To help prevent intentional or unintentional injuries, firearms should be removed from the home or stored unloaded and locked with ammunition locked and stored separately.

Preventing access to firearms is one of the most protective factors against suicide. If you or a family member have guns needing to be safely stored, Children’s Mercy security has free gunlocks available, no questions asked. Consider storing medications in 7-day (or less) pill box (some even have locks) to limit access to an entire bottle.

What else can you do to help prevent suicide? Communicate with your child. Family connectedness can be protective against suicide.

Help them understand your expectations and not to demand too much of him or herself. Share your feelings and ask about your child’s feelings. Let them know you are available to talk and other people that are also available (pediatrician, mental health provider, school counselor, social worker etc). Keep in mind, some kids may feel more comfortable talking to someone other than a parent due to fear of consequences (I won’t be allowed to go to the movies this weekend if I tell, etc). Help your child identify 1-2 people (again think school counselor, trusted family member or adult who is not a peer or significant other) to whom your child can talk to if

Ability KC Outpatient Therapy Clinic Supporting children with special needs in reaching their greatest ability through physical, occupational and speech therapy.

Contact us today for more information at 816.756.0780 or info@abilitykc.org

www.abilitykc.org PCWSN.com

Volume 9: Issue 6 / Parenting Children with Special Needs

9

needing help. Let those people know your child identified them as a person your child can go to if help is needed and that he or she will respond as a parent would. In addition to communicating with your child, encourage participation with an activity or passion to help provide sense of purpose and improve self-esteem.

Children’s Mercy takes this topic very seriously and is expanding suicide screening to help save lives. (more info here: https://news.childrensmercy.org/identifying-risk-inteens-prevention-is-possible/). Screening can help identify those at risk and connect them to mental health resources. If you are worried, please reach out to a mental health provider or seek emergency care. As a caregiver of a child with special needs, it is equally critical that you too seek help if you need it.

Remember you are not alone. As a parent and a pediatrician, prevention is the one of the most powerful tools available to help keep children healthy.

REFERENCES AND RESOURCES:

CDC Suicide prevention: https://www.cdc.gov/violenceprevention/suicide/ index.html CDC Ten Leading Causes of Death and Injury: https://www.cdc.gov/ injury/wisqars/LeadingCauses.html Children’s Mercy News Story Suicide Screening: https://news. childrensmercy.org/identifying-risk-in-teens-prevention-is-possible/

Healthychildren.org Talking about 13 Reasons Why. Accessed Sept 2018. https://healthychildren.org/English/family-life/Media/Pages/TalkingAbout-13-Reasons-Why-Teen-Suicide.aspx.

H. Sheftall, Lindsey Asti, Lisa M. Horowitz, Adrienne Felts, Cynthia A.Fontanella, John V. Campo, Jeffrey A. Bridge. Suicide in Elementary School-Aged Children and Early Adolescents. Arielle Pediatrics Sep 2016, e20160436; DOI: 10.1542/peds.2016-0436 Ludi E, Ballard ED, Greenbaum R, et al. Suicide Risk in Youth with Intellectual Disability: The Challenges of Screening. Journal of developmental and behavioral pediatrics : JDBP. 2012;33(5):431-440. doi:10.1097/DBP.0b013e3182599295. https://www.ncbi.nlm.nih.gov/pmc/ articles/PMC3464013/ Shayla Sullivant. Lean in: Addressing Teen Suicide risk lecture. Clincal Advances in Pediatrics Symposium. 26 September 2018.

Sonja A. Swanson, Ian Colman. Association between exposure to suicide and suicidality outcomes in youth. CMAJ Jul 2013, 185 (10) 870-877; DOI: 10.1503/cmaj.121377 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.

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

10 Parenting Children with Special Needs / Volume 9: Issue 6

PCWSN.com

Leaders in in Listening Listening and and Spoken Spoken Language Language Leaders At St. St. Joseph Joseph Institute, Institute, we we believe believe that that children children with with hearing hearing At loss, and and their their families, families, define define their their own own success. success. That’s That’s why why our our loss, mission has been to provide innovative services since 1837. mission has been to provide innovative services since 1837.

Indianapolis St. Louis Louis iHear Tele-Therapy Tele-Therapy Indianapolis St. iHear 9192 Waldemar Waldemar Road Road 1314 Strassner Strassner Available across across the the US US 9192 1314 Available Indianapolis, IN 46268 Brentwood, MO 63144 with an internet connection Indianapolis, IN 46268 Brentwood, MO 63144 with an internet connection (317) 471-8560 471-8560 (314) 918-1369 918-1369 (314) 918-1369 918-1369 (317) (314) (314) Every child.

Everywhere.

Every child. Everywhere. www.sjid.org www.sjid.org

PCWSN.com

Volume 9: Issue 6 / Parenting Children with Special Needs 11

HEALTHY

Living

By Chance Copeland

Take A Break What is respite care, and how can it help you?

A

nyone who has ever been a caregiver for someone else knows the challenges it can pose for a family unit. At its best, it can be rewarding to know that your loved one is getting the care they deserve. At its worst, it can be difficult, time-consuming, physically demanding and emotionally exhausting – and that is where respite care can come in handy.

Disabled-world.com defines respite care as “the provision of short-term, temporary relief to those who are caring for family members who would otherwise require permanent placement in a facility outside the home.”

Respite care comes in multiple forms. There is in-home respite, out-of-home respite, overnight respite, and emergency respite, but all have a similar goal: providing the necessary relief caregivers need so they can meet their own needs, because when one’s own needs are not met, they cannot meet the needs of those they are responsible for.

Respite care is growing in popularity, but some caregivers still have reservations about leaving their loved ones in the care of another.

In the article “RESPITE: Time Out for Caregivers,” caregiveraction.org lists four common fears associated with respite care: fear the temporary caregiver will do a bad job, fear they will do a better job than the family caregiver, fear of an emotional void when their family member is removed from their care, and fear that taking respite is a failure to meet the commitment made to the loved one being placed in respite care.

While all of these are valid fears, it is important to note that respite care can help the relationship between a caregiver and the one receiving care. As caregiveraction. org points out, “the presence of a third person…enables the caregiver and the person cared for to have a new conversation, see things from a different perspective, and occasionally even vent their feelings in confidence.”

When another caregiver is involved, it can lessen the strain of being a primary caregiver and provide an outlet for the person receiving care, who may not often have exposure to those outside the home.

Still, there are other benefits with allowing someone to intercede in the care of a loved

12 Parenting Children with Special Needs / Volume 9: Issue 6

one. According to Disabled World, respite care has been linked to improvements in caregiver health, the decreased likelihood of “out-of-home placements,” and a reduction in abuse and neglect. There is also science which suggests that respite can help marriages.

If you or a loved one needs respite care, there are multiple resources which can match a caregiver to a family. ARCH, the National Respite Network and Research Center, has a respite locater that makes it easy to find a provider in your area.

They also have a respite funding search and tips for finding a good respite care provider.

Taking the first step and recognizing when you need help is never easy, but November is National Family Caregivers month – a time to recognize and celebrate those who dedicate their lives to making the lives of their family members better. Why not celebrate by taking a break?

For more information on respite care or to find a respite care provider near you, visit archrespite.org.

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 6 / Parenting Children with Special Needs 13

Better than Normal Blue Springs Family Sticks Together Through It All

14 Parenting Children with Special Needs / Volume 9: Issue 6

PCWSN.com

By Chance Copeland

S

tepping into the Zittlau house feels like home. The walls are covered in picture frames and paintings and the couch in stuffed animals and blankets that serve as a gentle and steady reminder of the life lived there – a life that, by most accounts, seems normal – if not for Brian and Kathy Zittlau’s extraordinary son, Wally.

Kethy’s first pregnancy was relatively normal. Nine years ago, she delivered a healthy son she named Harry. Although he was also born early (at 30 weeks), he spent 35 days in the NICU and went home without any major complications. Six years ago, she had another baby – but this pregnancy was a little different, and at 25 ½ weeks premature, Wally entered the world. At first, they thought Wally was healthy despite his size. “[Wally] was just two pounds, so he was in one of the incubators…the NICU,” Brian said.

However, the Zittlau family quickly discovered Wally’s situation was anything but typical. Weeks of tests revealed that Wally was not breathing adequately on his own. He was dependent on the respirator he received in the NICU, and each time they attempted to remove it, he struggled to breathe.

“He almost died,” Brian said. “They couldn’t get [the respirator] back in.”

This was a frustrating time for the Zittlau family.

Despite understanding Wally was not breathing on his own, doctors could not find the cause.

“They couldn’t figure out why [nothing was] working,” Kethy said, referring to the multitude of solutions doctors posed which failed one by one.

Simultaneously, Brian and Kethy were navigating challenges in their own lives – the care of their son Harry, Brian’s job in Alaska, and mounting medical bills as they grappled with trying to decide where the best place to receive care would be. This continued for two months, and in this time, Wally received multiple life-threatening diagnoses: MRSA and CMV (cytomegalovirus infection).

PCWSN.com

Volume 9: Issue 6 / Parenting Children with Special Needs 15

According to the mayo clinic, CMV is a relatively common infection which occurs in many people. It is an infection that most frequently lays dormant for one’s entire life.

“Once you have it, you always have it,” Kethy said.

For those fortunate enough to have healthy immune systems, there may never be any symptoms. For those with compromised immune systems, cytomegalovirus can be deadly. In Wally’s case, a scope revealed that the CMV destroyed the cricoid cartilage of his larynx.

“What the cricoid is,” Brian said, “is a cartilage right above the voice box that keeps open the windpipe. Since [Wally’s] got damaged, all the tissue in his throat essentially fell on top of the voice box, and the hole going down to his lungs was actually smaller than a coffee straw.”

This meant that Wally needed a tracheostomy tube to keep his throat open, a feeding tube to get nutrients since he was unable to swallow, and specialized care to create a plan going forward. Since they lived in Alaska at the time, the family had no choice but to split up.

Brian had to go back to work, Harry to his grandparents, and Kethy had to stay with Wally to ensure he received the care he needed in the hospital. He ended up at Seattle Children’s Hospital while Brian worked in Alaska.

“I was probably the most depressed in my life,” Brian said, speaking of being without his family.

Of the six months Wally had been in Seattle Children’s hospital, Brian had never been able to see him due to the high demands of his job.

He worried about his sons, worried about his wife, and worried about the future.

When Brian finally did make it to the Children’s hospital, he had an experience that changed his life and shaped the family’s perspective going forward: he saw the things other children were also going through.

“It was like a light bulb went off in my head ,” Brian said. “I got dealt a pretty dirty hand, but in the other sense, what the heck are these parents going through? I really learned, right then and there, that I just had to accept this and we needed to go on.”

Since that day, the Zittlau family has done just that: accept life the way it is and move on.

They’ve seen many doctors in many hospitals who said they did not know how to treat Wally’s rare condition. Each time, they moved on, until they ended up in Cincinnati at the 16 Parenting Children with Special Needs / Volume 9: Issue 4

PCWSN.com

children’s hospital there where the staff was adequately trained to handle his case.

Wally is now six, and with each passing day, he grows a little bit stronger and the medical interventions get a little better. But the extensive care needed comes at a price which makes it necessary for Kethy and Brian to budget carefully and live modestly. According to Brian, it is not uncommon any given year to spend over half their income on medical bills.

“We’re not materialistic,” Kethy said. To trim expenses, she frequently uses coupons, shops during sale times, and keeps track of the best prices in all the local grocery stores. When Wally is home, she plays the role of nurse and mother, as their insurance only covers a private duty nurse 90 days a year. When he is in school, she works from home as an accountant and part time in the Blue Springs school district.

Despite the struggles they have faced over the years, the Zittlau family is the epitome of resilience. Wally is successful in school, has a lot of friends, and with his parents’ help has learned how to manage his condition. He is active in a lot of his own trach care, he can swallow some solid foods, and he has made consistent progress over the past few years. The doctors used cartilage from his ribs to create a cricoid ring, and most recently, they added a stent to widen the trachea as he grows. In December, Kethy and Wally plan to return to Cincinnati for a trach-cap trial, and if it works, he could potentially have his trach out by Spring.

He is a normal child – a child with an active social life, a zest for exploration, and an unceasing energy who is uninhibited by the challenges he has faced. He loves to wrestle his older brother Harry, is quite the manipulator when it comes to sneaking his Netflix into the bathroom, and he could spend all day playing outside if he was allowed.

“He has such a great personality, a great sense of humor, and he’s very independent,” Brian said.

According to Kethy, Wally is also incredibly empathetic and cares deeply about how those around him feel – but he is not the only one. Having a medically complex child led the Zittlau family to taking strides in helping other families of children with tracheostomies. They participate in a Facebook group where they send their extra supplies to families who may need them, and in return, they reach out for support when they have a need. This network allows people who understand to their situation to lean on one another for help when times are challenging.

Wally, Harry, Brian, and Kethy have proven they can weather any storm and face whatever challenges arise. They have seen numerous hospitals, numerous states, and months of separation on their journey to better health for Wally, and their key to success is relatively simple: holding tightly to each other.

“You really figure out what’s important in life,” Brian said. “And you figure out that having new shoes or material things doesn’t make you happy. We love being a family. Period.”

Lakemary’s Outpatient Therapy

Lakemary’s Outpatient Therapy provides individual, family, or group therapy to children and adults with intellectual/developmental disabilities and mental health concerns. Licensed therapists provide treatment services in both Johnson County and Miami Counties in Kansas.

We can help with

• Emotional Regulation • Social Interactions • Impulse Control • Obsessive Thoughts/Behaviors • Anger Management • Grief/Loss

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

www.lakemary.org

PCWSN.com

Volume 9: Issue 6 / Parenting Children with Special Needs 17

Sensory Integration at Home Are you doing enough?

By Belinda Peister

W

hat do a crowded room, itchy clothes and music playing all have in common?

They can all be very overstimulating to children who have an oversensitive processing system. A child who has an under-sensitive processing system may seem like they are sluggish or tired all the time, or as though they are in a daze. If you ever have concerns about your child’s processing system, make sure to discuss it with their pediatrician. Children who have an oversensitive or under-sensitive processing system can benefit from sensory integration at school and at home.

In this article, I hope to share some ways you can work with your child at home.

Working in the field of Early Education for over 20 years has provided me many different opportunities to see how sensory integration can help children regulate their processing systems and develop selfregulation.

Sensory integration can be beneficial if used properly. It is very important to understand what you do with children can either help them calm down or wake up their sensory systems. Some of the things suggested could do both depending on the child, so be aware of that and know every child reacts differently given different circumstances.

Stimulation is key for children who have an under-sensitive processing system. Below are some tips to try to alert your child’s system.

• Bouncing on a large yoga ball • Using a vibrating toothbrush to brush teeth • Exploring sour (lemon, grapefruit wedges), chewy (beef jerky, Twizzlers), or spicy foods (jalapeno chips, horseradish dip). It doesn’t take much, so do this in moderation.

• Barefoot exploration allows the child to explore using part of their body that may not typically get to feel textures.

• Rolling bumpy textures across the child’s arms, legs and core.

A child with an over-sensitive processing system is easily stimulated and will need help calming down. This can be done in many ways and different things work for different children.

18 Parenting Children with Special Needs / Volume 9: Issue 6

PCWSN.com

• Lighting - Switch the lighting to lamp lighting only or shut it off completely and use only natural light from window.

• Rubbing lotion in a downward motion from core of their body out will help sooth their system. Soothing smells are typically vanilla, lavender, and even cocoa butter. Unscented is also a safe option.

• Heavy lifting activities such as pushing a box with heavy items in it or pulling a wagon full of heavy items.

• Swinging • Bear hugs until you see your child’s body relax and then let go.

• Talking in a quiet voice and shutting off any other noises happening.

Finally, messy play and sensory bins are great ways to incorporate sensory integration into your child’s play at home. Messy activities can be contained by using a tray, and plasticware with a lid works well for sensory bins. Always provide your child with items that interest them as part of the activities. Below are some great activities to explore with your child. Please note that it is important to pay attention to your child’s cues and observe his or her reaction (i.e. whether the activity is calming or stimulating).

Messy Play

• Finger painting • Oblique (Mixture of cornstarch and water) • Water play (add sponges, cups and funnels) • Shaving cream (place cars, animals, or other items of interest in the shaving cream to peak their interest) • Play dough • Slime (simple recipes can be found online)

Sensory Bins

• Dried Beans • Dried Pasta

• Oatmeal (not cooked) • Shredded paper • Water beads (can get at most craft stores) • Sand (regular or kinetic) • Dried Rice Sensory integration is one way to help your child process the world around them. Although these activities seem simple, they can be very effective. It is important to remember that children learn through their senses and through play, so make the activities fun as you discover what works best for your child and tweak the activities to suit their liking.

Belinda Peister is a lead teacher at Ability KC who has worked in Early Education for over 20 years. She has an Associates in Early Education with an emphasis in Special Education and a Bachelor’s degree in Human Services.

Working with children and families who have special needs is her passion.

PCWSN.com

Volume 9: Issue 6 / Parenting Children with Special Needs 19

KID’S

Corner

At Your Service

S

Fast facts about service dogs

ervice dogs work hard each and every day to protect their human counterparts. Not only are they constant companions, but they are hardworking animals that can help reduce stress and anxiety levels, which can help lessen the symptoms of posttraumatic stress and traumatic brain injury, for example.

However, a survey by American Humane, the country’s first national humane organization, suggests that employees are not educated about the unique needs of customers with service dogs. Nearly seven in 10 (69 percent) retail employees said they never received training from their employer on the questions they are legally allowed to ask customers to verify an animal is a service dog.

In honor of National Service Dog Month, consider these facts about the four-legged service animals:

Further adding to confusion is a lack of understanding of the difference between service dogs and other assistance animals.

Emotional support dogs and therapy dogs assist people in their daily lives, but they do not have the same responsibilities as service animals. For instance, therapy dogs provide affection and comfort to their owners, but they do not have special rights of access in all buildings or public areas. Since service animals often provide mobility assistance or communicate medical alerts, they should always be allowed to accompany their owners.

Common Misconceptions About Service Dogs

Because they’re often cute and cuddly, it’s not unusual for people to forget that service dogs are working animals, not pets, and they have been individually trained to help people with disabilities. Guide, hearing and service dogs typically accompany a person anywhere the general public is allowed, including restaurants, businesses and on airplanes, providing support as their owners go about their daily lives.

A Helping Paw

At times, these innocent misconceptions can lead to discrimination against those

20 Parenting Children with Special Needs / Volume 9: Issue 6

who rely on the support of a service dog. To combat this problem, American Humane and Mars Petcare, the world’s leading pet nutrition and health care business, created resources, such as training videos, to help businesses better accommodate patrons who have service dogs. Aligning with the Better Cities For Pets™ initiative, the videos and other resources help provide an understanding of the roles service dogs play to help create a world where pets and working animals are welcome across all communities.

“Dogs have incredible abilities, including saving lives and making the world a better place,” said Angel May, corporate citizenship lead at Mars Petcare.

“Service dogs are animals that should be celebrated for the good they bring to society, and we hope that increased awareness of their working nature leads to a deeper understanding of their important role.”

For additional information on service dogs, visit bettercitiesforpets.com/servicedogs.

PCWSN.com

INTERACTIVE

Corner

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

TIC TAC TOE

Name:

PCWSN Crossword Complete the crossword below 1

2

3

4 5

MOM CHILDCARE 6 TURKEY HOSPITAL Name: DAD7 ANIMALS PCWSN Crossword FOOD NEW Complete the crossword below 1 THANKSGIVING YEARS 8 9 10 HOLIDAYS MISTLETOE 3 4 PRESENTS SANTA 5 11 FAMILY MIRACLE

2

Name:

PCWSN Crossword

6

12

Complete the crossword below

Created with TheTeac hers Co rner.net Cro s s wo rd Puz z le Generat

2

Across

7

1

3

4 5

6

7

9

Down

3. an o rgan in the bo dy that pumps blo o d thro ugho ut the entire bo dy.

5 . a ho rmo ne that is secreted by the pancreas. It helps to 8 regulate the metabo lism o f fat and carbo hydrate in the bo dy. 10 6 . a substance used to pro vide immunity against o ne o r mo re diseases.

7 . the flexible co nnective tissue that co vers the ends o f 11 bo nes at a jo int.

9 . medicatio ns that treat infectio ns caused by bacteria.

11. the heart rate. It tells the number o f times the heart beats per unit o f time, typically o ne minute.

12 12. the hereditary material that is fo und in the cells o f humans and nearly all o ther o rganisms.

1. a co nditio n o f the bo dy that happens when the lo ss o bo dy fluids is greater than the amo unt o f fluids being taken in.

2. a sensatio n o f disco mfo rt in the upper sto mach that makes a perso n feel as tho ugh they are go ing to vo mit.

4 . an abno rmal immune system respo nse to basically harmless substances.

8. a medical test in which a small amo unt o f cells o r tissue is remo ved to examine it fo r signs o f disease.

10 . the co ntro l center o f the nervo us system. It co ntro ls practically everything the bo dy do es.

Created with TheTeac hers Co rner.net Cro s s wo rd Puz z le Generato r

Across

Down

8 the bo dy that pumps blo o d thro ugho ut the 3. an o rgan in 1. a co nditio n o f the bo dy that happens when the lo ss o f entire bo dy. bo dy fluids is greater than the amo unt o f fluids being 9 10 5 . a ho rmo ne that is secreted by the pancreas. It helps to taken in. regulate the metabo lism o f fat and carbo hydrate in the 2. a sensatio n o f disco mfo rt in the upper sto mach that bo dy. makes a perso n feel as tho ugh they are go ing to vo mit.

6 . a substance 4 . an abno rmal immune system respo nse to basically 11 used to pro vide immunity against o ne o r mo re diseases. harmless substances.

7 . the flexible co nnective tissue that co vers the ends o f 8. a medical test in which a small amo unt o f cells o r Created with bo nes at a jo int. tissue is remo ved to examine it fo r signs o f disease.

TheTeachersCorner.net 12 10 . the co ntro l center o f the nervo us system. It co ntro ls 9 . medicatio ns that treat infectio ns caused by bacteria.

Crossword Puzzle Generator practically everything the bo dy do es.

11. the heart rate. It tells the number o f times the heart beats per unit o f time, typically o ne minute.

Created with TheTeac hers Co rner.net Cro s s wo rd Puz z le Generato r 12. the hereditary material that is fo und in the cells o f Down humans and nearly all o ther o rganisms. the bo dy that pumps blo o d thro ugho ut the 1. a co nditio n o f the bo dy that happens when the lo ss o f PCWSN.com Volume 9: Issue 6 / arenting Children with Special Needs 21 bo dy fluids is greater than the amo unt o f fluids being that is secreted by the pancreas. It helps to taken in. etabo lism o f fat and carbo hydrate in the 2. a sensatio n o f disco mfo rt in the upper sto mach that

P

INDEPENDENT

Living

By Amy Cox

Transportation is Key

T

ransportation is a key factor in reaching many levels of independence for adults with special needs and can mean the difference between becoming isolated or being a vibrant member of the community. Transportation allows us to connect with employment, with community resources, and with other people. Transportation can also be a barrier that is very complex, both on an individual level and on a community level and is being addressed in a number of ways.

Transportation needs

While classes and other resources are available to help some teens with special needs learn to drive, the majority of adult individuals with special needs rely on public transportation to help them get to work, to purchase the things they need to live, and to participate in activities in their community. As our transportation systems are evolving, there is still a gap between the services available and the needs in the community. In some cases, even when transportation is available, it can be cost prohibitive or physically challenging for some individuals to access transportation.

Some of the transportation resources do not cross county or state boundaries, even within a metropolitan area. This can create

significant barriers in getting to work for individuals with special needs and make coordination of transportation a challenge.

Transportation resources

In general, people have the option of private or public transportation. In the public sector, individuals can take advantage of the more traditional modes of transportation like the bus, or they can engage with other forms of transportation such as Uber.

Here are just some of the transportation resources available to individuals with special needs in the Kansas City area: RideKC is a service of Kansas City Area Transit Authority, KCATA. RideKC offers bus service and paratransit services and offers special supports for individuals having special needs. More information can be found here: http://ridekc.org/mobility-services OATS offers transportation for seniors and individuals having special needs in 87 counties. For more information, visit http:// www.oatstransit.org/ Adults with intellectual and developmental disabilities in Jackson County may qualify for transportation services via Medicaid waiver services and some specialized funding through EITAS. More information on their transportation services can be found at: https://www.eitas.org/transportation/

22 Parenting Children with Special Needs / Volume 9: Issue 6

Finally, for some, services such as Uber or Lyft are an option. Since these services are private drivers contracted with the companies and are not specific to persons having special needs, they may be lacking the specialized training or physical accessibility of some of the services. These services can also become cost prohibitive if used as the sole form of transportation for individuals.

Transportation trends and future

Technology and those that develop it are always working to solve problems and allow us to think differently about situations.

Discussions around self-driving cars and assistive devices to help individuals drive on their own could create opportunities for individuals with special needs. The key is keeping focus on individuals having special needs while these technologies are evolving in order to address their specific needs and allow first-hand input.

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.

PCWSN.com

All In This Together: Family Dynamics With Typical and Special Needs Children An Interview With Jessica Wagers, Mother of Three and Craig HomeCare Client Relationships between siblings are complex—often challenging even on the easiest days. When one or some—but not all—of the siblings have special needs, that complexity reaches a new level.

Jessica Wagers has three children, two of whom have special needs. We asked Jessica how her family handles the dynamics of typical and special needs siblings.

1. Tell us about your children.

Our oldest, Isabella, is 14 and a freshman in high school. She’s involved in cheerleading, band, FFA and our church youth group.

She’s a very loving, great big sister to 8-year-old twins Harrison and Hamilton.

Harrison has a rare genetic condition (P10, OCD, ADHD, photographic memory). He’s incredibly smart with a huge vocabulary, has a super fun personality, loves to sing, and works electronics very well. He participates in OT, PT, speech therapy, and therapeutic horseback riding. Harrison doesn’t need in-home pediatric nursing but does spend some time in the hospital.

Hamilton has a different genetic condition (PMS22Q13, diagnosis of autism) and requires a lot more assistance, including a feeding tube. He is non-verbal but working on speech, and he also participates in OT, PT, adaptive PE, horseback riding and aquatic therapy. Hamilton used to need 24 hour nursing care but is down to about 45 hours per week now, including time at school.

2. What are some concerns parents have regarding the relationship between typical and special needs siblings?

There’s a lot of stress on typical siblings. Isabella is overprotective and always looks out for her younger brothers. I worry that she will make sacrifices in her future to take care of them and do whatever she needs to do to make sure they’re included.

3. Special needs children can feel left out of activities, while typical siblings can feel they get less attention. What are some ways your children all enjoy time together?

How has having special needs siblings helped your typical child learn, grow and develop?

Isabella was 6 when Hamilton and Harrison were born. She knew how to suction out a trach at age 7. She can work a feeding tube, dispense meds, and administer an inhaler. I have no doubts that she will take care of her brothers.

This experience has helped Isabella see people with special needs in a different way. She has volunteered with a special needs church group and she has a heart for it. She even wants to be a pediatric surgeon one day. This has changed her perspective on people in general, and she’s one of the most mature teenagers I know.

Is there anything in particular she struggles with?

Isabella is very put together for her age, but of course there are things that are difficult for her—like Hamilton not being able to talk and answer her questions. They can’t always do the same things that other siblings do together.

Some of our favorites: • Games and cards • Playing catch • Horseback riding • Swimming • Dancing • Watching movies • Going to football games • Living room “camp outs” • Playing outside in the sprinkler and with water balloons • Going on walks (Hamilton looooves being outside!)

I know Isabella would like their world to be a little bit easier.

We like routine; it makes everyone’s world easier. We get up at the same time, eat breakfast together as a family before school, read bedtime stories together, and say prayers together.

Special needs kids are constantly changing. What’s wrong today might not be wrong tomorrow. Always trust your instincts.

I always want to end an activity on a good note. Both Hamilton and Harrison get overwhelmed and overstimulated at times, so I need to stay in tune with when they’re reaching their limit.

PCWSN.com

What advice would you give other parents?

You need to take care of yourself—you need breaks. Find someone you can trust to leave the kids with if need be. Go get coffee, go on a shopping run—those little things are important. You may feel you can’t get away but you need to make sure you as a parent are healthy and happy, too. It’s critical.

Have a good support system: family, friends and nurses. Our Craig HomeCare nurses are like family.

Give them the tools to be successful. “Independent as possible” is always my goal.

Every day is a new day. Hang in there because it does get better and easier.

Volume 9: Issue 6 / Parenting Children with Special Needs 23

PRACTICAL

Matters

By Hannah Bray Clary

Residential Care in Missouri

M

aking the difficult decision to pursue residential care for a child is an emotional one.

Parents believe that no one can provide their child with the love or care that they can. However, when necessary, it is a decision that can improve the quality of life for an individual by offering him or her increased medical care, supervision, and opportunities for socialization and independence. This article will cover what residential care is, where to start with the process, and what to look for in a residential provider, from the perspective of Missouri provider, the Austen-Dooley Company.

The Austen-Dooley Company has been providing care for individuals with disabilities in the state of Missouri since 2001. Currently, ADC operates in Kansas City, St. Louis, and Springfield metropolitan areas. Austen-Dooley cares for children and adults with varying degrees of mental and physical disabilities

such as G/J tubes, wound care, vent care, Prader Willi syndrome, down syndrome, spinal cord injury, and more. Currently, ADC has 30 group homes and ISL’s and cares for 91 individuals.

What is residential care?

Residential care is a long-term care option for the developmentally disabled.

Residential care means a person lives in an agency owned group home or ISL (individualized supported living) with 2-6 other individuals with disabilities.

They can receive up to 24-hour support and supervision, based on the individual’s needs. Residential care is different from in-home care, in that in-home care allows a person to remain in their own home, and personal care assistants come to the home for a set number of hours a day.

Residential care is an option for individuals with disabilities needing specialized care above and beyond what in-home care can offer and/or as a person grows and begins

24 Parenting Children with Special Needs / Volume 9: Issue 6

to seek independence. It gives people an opportunity to receive the care they need from dedicated, trained direct support professionals. It can often give parents a chance to feel like a parent again and not a caretaker. In a group home or ISL, people may receive up to 24 hours of care from a DSP (direct support professional) CNA, LPN, or RN, depending on the level of care needed. Staff provide specialized care and encourage independence. They help them with activities of daily living like grooming, housekeeping, meals, and transportation.

Those living in residential care remain a part of a community, socializing, and developing a routine.

Where to Start

In Missouri, the first step when considering residential placement is to contact the regional office for the Missouri Department of Mental Health’s Division of Developmental Disabilities. The Kansas City Regional Office phone number is 816889-3400. If living elsewhere in Missouri, PCWSN.com

the Missouri Department of Mental Health website, dmh.mo.gov, has a tab titled “Developmental Disabilities.” In addition to other great information, there is a bulleted menu with an option titled “Regional Offices.” A drop-down county menu provides phone numbers for all Missouri regional offices.

The first point of contact at the Regional Office is intake. They will ask questions over the phone to begin the application process. It is very important to be as honest and detailed as possible about the care needed and why as this will determine if your child qualifies for assistance and how much he or she qualifies for. If qualified, your child will receive a service coordinator/case manager who will aid in developing an individual service plan and searching for support options and agencies. Lesa Tracy, Assistant Director of the Kansas City Regional Office, is also available for any additional questions at 816-889-3481.

Kendra Shoop, Executive Director of Austen-Dooley with over 20 years of experience in the industry, urges parents to “Get involved with DMH (The Department of Mental Health) as soon as possible to get a service coordinator. They will help you figure out what services your child qualifies for at that point in time and they will continue to do so as they grow and may need increased supports.” She also suggests parents get involved with their child’s school to develop a plan for after graduation. Some day programs/ workshops have waiting lists, and day programs can provide daily structure that your child may miss after graduation.

Living in a new home can be a difficult transition for your child.

Make sure to look for an agency that is dedicated to pairing individuals with other residents that would be a good fit. Residents should have similar lifestyles and enjoy or be content with each other’s company. When considering the staff who will care for the individuals in the home, ask about staff ratio and schedules to see how many caretakers there are per person and when they will be coming and going from the home. Also ask how often managers are in the homes. Managers work with the staff and service coordinators to ensure care plans are being followed.

During a home tour, ask to see the bedroom your child would have. Look around the house to make sure it is clean and organized. Do not be afraid to thoroughly examine the home, checking things like the refrigerator to make sure it is stocked.

Ask what type of meals would be served and how that is decided.

Residents may have specialized menus based on diet, and personal preference is also considered.

It may be difficult, but parents need to be patient with the process. Finding the right home and caretakers for an individual can take time.

Ask how transportation to medical appointments, day programs, and personal outings is provided. Ask to see the vehicle that would be used to transport your child. Ask if the van is dedicated to that specific home or if it is shared between multiple homes. Be sure to ask what type of community activities individuals participate in, and how often. If your child attends a day program, ask the agency if they have a location close enough to transport them to that day program.

It may be difficult, but parents need to be patient with the process. Finding the right home and caretakers for an individual can take time. An individual’s service coordinator, the selected agency, and the state must work together every step of the way, and some approvals take time. Once an agency is selected, that agency will work to find a suitable roommate(s) and home for the person.

Before selecting an agency, Kelly Creek, co-founder of Austen-Dooley Company, strongly recommends asking the agency for a list of parents and guardians of individuals who currently receive services. Contact the references and see how they feel about the services their loved one receives from the agency. Do as much up-front research on an agency as you can to avoid problems or surprises later.

What to Look for

Residential care is often a last choice for parents, but it is a big first step in ensuring your child is receiving life-long quality care.

If considering residential care, parents need remember that they play a vital role in their child’s transition to a new home, and their support and encouragement is needed before, during, and after the move. It can be an emotional time, but it does not have to be a scary one. Parents, service coordinators, and agency staff all work together with one common goal: to help people be happy and meet their full potential.

When selecting an agency, there are many things to look for that will indicate a quality provider. The most important is to look for an agency who has the trained staff to provide supports for specific needs. Some agencies specialize in behavioral needs while others specialize in medical. Service coordinators can help guide parents to appropriate options. In the beginning, parents should make a list of non-negotiables that they expect from an agency. Detail what is important to you and your child.

Austen Plain, co-founder of Austen-Dooley Company, says to parents, “Don’t be afraid to ask for a site tour. Tour multiple homes with multiple agencies. Gather a list of questions and concerns and speak to the staff that would be directly caring for your child. Talk to them about what the day to day is like.” He recommends that you pay attention to how the residents are dressed and groomed. Make sure that residents appear happy and well cared for.

PCWSN.com

Hannah (Bray) Clary has a master’s degree in Mass Communication from the University of Central Missouri. Hannah is Project Manager for the Austen-Dooley Company. She also serves as Board Secretary for Take Flight Kansas City, a nonprofit with the mission of providing children and adults with physical and developmental disabilities opportunities to experience cultural and community activities.

Volume 9: Issue 6 / 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.

Locally owned and here for you!

Make sure to visit our brand new website at cherubmedical.com.

Our Services Cherub Medical Supply will work with your doctors, hospital staff, and home nursing agencies to provide the training you need so that you can care for your child at home.

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.

Having a special needs child comes with a variety of challenges … I can honestly say that

Cherub makes it as simple as possible. As a parent you ‘don’t know what you don’t know’.

• Cardiac Apnea Monitors Cherub has been a wonderful support in trouble shooting and preparing us for life’s situations.

• Mechanical Ventilation They truely go above and beyond to serve the children. When we have had health challenges • Tracheostomy Supplies with our son, they have fully supported us. Cherub is one of the few companies that is truly competent; they get it right—from taking orders to billing insurance to delivering the right stuff!

• 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!”

• Suction Units — Beth • Cough Assist Devices • Enteral Feeding Pumps & Gastrostomy Supplies • Medication Compressor & Nebulizer Supplies • Specialty Equipment

26 Parenting Children with Special Needs / Volume 9: Issue 6

PCWSN.com

ResourceGuide

Advertise Here and Online!

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

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

$WWHQWLRQ 'HƓFLW 'LVRUGHU

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 &KLOGUHQ DQG $GXOWV ZLWK $WWHQWLRQ 'HƓFLW 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.

PCWSN.com

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 6 / Parenting Children with Special Needs 27

ResourceGuide

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

Guide also available on PCWSN.com

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

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

Cancer/Leukemia/Lymphoma

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 $PHULFDQ 'LDEHWHV $VVRFLDWLRQ .DQVDV &LW\ 2IƓFH 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 6

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

ResourceGuide

SPONSORED BY

Guide also available on PCWSN.com

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

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

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

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

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

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 6 / Parenting Children with Special Needs 29

ResourceGuide

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

Guide also available on PCWSN.com

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

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 6

6SLQD %LƓGD 6SLQD %LƓGD $VVRFLDWLRQ 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

7XPRU 1HXURƓEURPDWRVLV

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

Want to list your business in our Resource Guide?

Interested in advertising?

Contact: advertise@pcwsn.com or call 816-217-7486 PCWSN.com

WHAT WILL TURN THE IDEAS

OF TODAY INTO THE CURES OF

TOMORROW? LOVE WILL.

Inspired by love, we’re striving to discover the innovations and breakthroughs that will help us see medicine not only for what it is — but what it could be.

LO V E W I LL.