PCWSN 2021: Volume 11, Issue 4

FREE Publication • Also available online at PCWSN.com

Ready to Soar: ONE MAN’S MISSION TO GIVE OTHERS WINGS

HOW DO I PARENT MY ADOLESCENT WITH SPECIAL NEEDS?

GENTLE TEACHING ARTICLE FOR PARENTING CHILDREN WITH SPECIAL NEEDS

I SCREEN, YOU SCREEN, WE ALL NEED OUR EYE SCREEN!

IEP ADVOCACY: TAKE ACTION NOW DESPITE PANDEMIC UNCERTAINTY

Missouri’s Comprehensive 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.

The Center for Advanced Pediatric Limb Reconstruction & Lengthening at Shriners Hospitals for Children — St. Louis

The Center for Advanced Pediatric Limb Reconstruction and Lengthening at Shriners Hospitals for Children — St. Louis takes pride in providing high-quality care in a family-centered environment.

We believe every child is unique and treat each as such, so our care is personalized for each patient and family. Our teams of health care professionals work closely together to ensure seamless care for your child. We look forward to serving your child’s limb difference needs and answering any and all questions you may have.

Conditions Treated Angulatory Problems • • • • •

Blount’s Disease Bowed legs Knees turned out Knock knees Others

Leg Length Discrepancy

Other Problems

• Acquired

• •

• •

Rotational Problems • Femoral Anteversion • In-toeing / out-toeing • Tibial Torsion • Toe walking

Know a Child We Can Help?

314-692-6443

Osteogenesis Imperfecta Congential Pseudarthrosis of the tibia Metabolic Bone Disease Rickets

LimbLengtheningSTL@shrinenet.org

STLShrinersLimbReconstruction.com

PUBLISHER’S

Letter

Letting Go of Expectations

L

ately, I’ve been spending a lot of time thinking about expectations. Do you ever think about the expectations you feel like exist in your roles as a parent, caregiver or a provider? Sometimes, I feel like the word expectation can be a set-up for guaranteed disaster. I’ll come back to that later.

happy. I think I can even say that these are my passions in life. My biggest heartbreak is feeling like I let someone down, hurt, or otherwise failed them. I often tell myself that if I make others happy, I’ll be happy, too. Usually, that’s a wonderful combination, but it can also be one more difficult-to-achieve expectation.

Responsibilities are not the same as expectations. We all have responsibilities -- I have yet to meet a person who doesn’t.

We all want to live the best life we can, but responsibilities - and the choices that come along with them - are part of that life. These days we are making more choices than ever, feeling expected to choose for a future we may feel no control over while being held responsible for whatever choice we make. Living with those choices, at least for me, can be really scary - and sometimes it feels like the wrong choice is all too easy to make.

Here’s why: I know that I can’t control another person’s happiness, or control the future outcomes that may or may not make them happy. I know, logically, that I’m not made to do things all alone, nor am I expected to. The Bible tells us that.

Yet I try, over and over again, to rise to the unrealistic expectations I have for myself and make everyone happy -- often sacrificing my own happiness in the process and setting myself up for sure disappointment.

But, what about happiness? I’ve always told myself that serving, helping others, and caring for others is what makes me 4

Parenting Children with Special Needs

In my recent ponderings, I’ve come to realize that a lot of us do this -- we set expectations that are too high and become personally responsible for their outcomes.

Today, I ask you this: what expectations do you have that set you up for disappointment, add responsibility to your plate, or are otherwise detrimental to your mental health? What keeps you from living in the moment? Can changing your expectations better your life?

I know resetting my expectations can better mine, and this is something I’m working on. Seeing each moment as its own, each decision as self-contained, based on the needs and wants in the “here” and “now” can be hard. But chastising myself for not living up to expectations that were unrealistic in the first place can often be harder.

So, try something new. Ditch your expectations. Spend a day without trying to make someone else happy. Sit a while with uncertainty and recognize that we often only have control over how we respond and not what happens in the first place.

Breathe, and take the day in stride. I’ll be alongside you doing the same.

Until next time, Stephanie Myers

PCWSN.com

Volume 11 • Issue 4 FEATURES

Sponsored Feature

8

I Screen, You Screen, We All Need Our Eye Screen!

8

By Cynnthia Chow, DO, FAAP

Ready to Soar: One Man’s Mission to Give Others Wings

12

By Chance Copeland

Do I Parent My Adolescent 22 How with Special Needs?

18

By Dr. Liz Matheis, PHD

DEPARTMENTS

18 Gentle Teaching Therapy

By Kari Wiss

20 IEP Advocacy: Take Action Now Practical Matters

Despite Pandemic Uncertainty

By Samara Klein

FREE Publication

22

On the Cover:

SOAR exists to transform the lives of special families and empower them to SOAR in their local and faith communities.

IN EVERY ISSUE

• Also available

online at PCWS

N.com

Ready to So ar: ONE MAN’S MISS ION TO GIVE OTHERS WINGS

HOW DO I PARE NT MY ADOLESCENT WITH SPECIAL NEED S? I SCREEN, YOU SCREEN, WE ALL NEED OUR EYE SCR EEN!

GENTLE TEAC HING ARTICLE FOR PARENTING CHILDREN WITH SPECIAL NEED S

Missouri’s Com prehensive Heal

IEP ADVOCAC Y: TAKE ACTION NOW PANDEMIC UNC DESPITE ERTAINTY th and Services

Resource Guid

e

4 Publisher’s Letter 29 Resource Guide

Letting Go of Expectations

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

PCWSN.com

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 11 • Issue 4 Publisher Stephanie Myers Stephanie@PCWSN.com Editor Chance Copeland pcwsn.editor@gmail.com Art Director Stephanie Biddle Design@pcwsn.com Business Development & Sales Director Stephanie Myers Stephanie@PCWSN.com Contact us at 30905 E. Stony Point School Road Grain Valley, MO 64029 816-217-7486 ISSN 2168-1449 Website PCWSN.com Social Media Facebook.com/pcwsn

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

Twitter.com: @pcwsn Instagram: @pcwsn1 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

Parenting Children with Special Needs

Specialty Pediatric Orthopaedic Care

DID YOU KNOW?

According to the National Eye Institute, Refractive error is the most frequently diagnosed eye condition in the United States.

Shriners Hospitals for Children — St. Louis has been bringing Love to the Rescue® to children with orthopaedic conditions and bone diseases for more than 95 years, regardless of their families’ ability to pay.

Conditions Treated: • Spine/scoliosis

• Hip and lower extremity (foot, ankle, leg) • Upper extremity (hand, arm shoulder) • Limb length differences

• Juvenile Idiopathic Arthritis • Fracture care

(non-emergent) 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 • Metabolic bone diseases (Rickets, Blounts, brittle Children With Special Needs, its affiliates, employees, contractors, contributors, bones) writers, editors, designers, photographers, and its Editorial Board of Advisors • Orthopaedic conditions related to Cerebral Palsy [“Publisher”] do not accept responsibility for inaccuracies, errors or omissions or and Spina Bifida 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 Call Today to Schedule for any damages whatsoever that mayan be Appointment: suffered by a patient, purchaser, or user of any products or services advertised or 800-850-2960 mentioned editorially herein. You expressly agree that your use of information in Parenting Children With Special Needs is at shrinershospitalsforchildren.org/st-louis 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

Parenting Children with Special Needs

7

SPONSORED

Feature

I Screen, You Screen, We All Need Our Eye Screen!

By Cynthia Chow, DO, FAAP

V

ision screening is an important part of your child’s health checkup. This is the first line of defense to help detect vision problems, and findings can be early indicators of your child’s general health. Healthy eyes and proper vision play critical roles in childhood development. During an exam, the doctor will check vision, test if your child’s eyes are working together correctly, and assess visual behavior. Examination of the eyes and visual system begins right after a baby is born and continues throughout childhood and adolescence during the routine well-child visits. The American Academy of Pediatrics and the American Academy of Ophthalmology recommend that children have their eyes examined by a pediatrician during these following stages.

8

Parenting Children with Special Needs

Newborn:

All babies should have their eyes checked before leaving the hospital. The pediatrician will examine a baby’s eyes, eyelids, pupils, and light reflection from the back of the eye (known as the “red reflex”) to look for any problems. If detected, babies are referred to a pediatric ophthalmologist, who specializes in treating childhood eye problems with medicine and surgery. Premature babies with retinopathy of prematurity (ROP), high risk medical problems, metabolic conditions with associated eye abnormalities, or babies with a family history of eye conditions (such as childhood glaucoma, cataracts, or retinoblastoma) should also be evaluated by a pediatric eye specialist.

PCWSN.com

Infant and Toddler:

Throughout the first year of life, a baby’s vision develops rapidly and is regularly checked by the pediatrician during well visits. In addition to examining the eyes, your doctor will check for visual development milestones, normal eye movement, and appropriate eye alignment. At about 3 months of age, babies start to use the eyes together to fixate on and follow an object such as a toy or ball.

Although intermittent eye crossing can be normal and resolve by 5 months of age, if after 4 months of age the eyes move inward (crossing) or outward or are unable to maintain steady focus, children should be referred to a pediatric ophthalmologist. Starting at 1 year old, instrument-based screening with photoscreeners are often used to identify risk factors that can cause decreased vision. These instruments take pictures of the eyes’ red reflexes and estimate refractive error, which occur when the eye has trouble focusing resulting in blurry vision. Photoscreeners help detect causes of poor vision like eye misalignment, the need for glasses, or intraocular abnormalities. Instrument-based screening can be repeated each year during well visits between 1 and 3 years of age.

Preschool:

Once children can cooperate and read an eye chart easily (often around 3 years old), they will complete visual acuity testing as part of their routine vision screening. Visual acuity tests help determine the sharpness of their vision by having them identify symbols, pictures, or letters while standing a standardized

distance away from the chart. Children who cannot cooperate, are nonverbal, or are developmentally delayed can use instrumentbased devices for preschool vision screening. Those who fail either test should be examined by a pediatric eye specialist. All kids should complete regular visual acuity screening each year from 3 to 5 years of age.

School-Age and Adolescent:

Children with learning difficulties, behavioral concerns, or inability to read at grade level should have their eyes checked for vision issues. Common clues to look out for include headaches, difficulty reading, poor focusing, or blurred or double vision. You may also notice your child squinting or sitting too closely to the TV. If these are present, children should be examined right away so that any eye conditions can be corrected early. After age 5, vision screening is repeated every 1 to 2 years with visual acuity letter charts. This is part of their routine eye screening which can be done at school and/or with your pediatrician.

Common Vision Problems

Several common eye problems that affect kids can be detected during their vision screening.

Refractive error is the most frequently diagnosed eye condition in the United States. This includes nearsightedness (myopia), which means trouble seeing things far away and commonly develops in school age children. Other types include farsightedness (hyperopia) with trouble seeing things up close, and astigmatism, where uneven focus and

913.227. 0440 • cherubmedical.com • Cardiac Apnea Monitors Kansas City’s only full service, exclusively • Mechanical Ventilation pediatric medical equipment provider.

Locally owned and here for you!

• Tracheostomy Supplies • Oxygen • Cardiac ApneaAdministration Monitors • Cough Assist Devices • Mechanical Ventilation • Oximetry Monitoring• Enteral Feeding Pumps & • Tracheostomy Supplies Gastrostomy Supplies • Suction Units • Oxygen Administration • Medication Compressor & • Oximetry Monitoring • Cough Assist Devices Nebulizer Supplies • Suction Units • Specialty Equipment

• Enteral Feeding Pumps & Gastrostomy Supplies

Cherub Medical Supply will work with your doctors, hospital staff, and home nursing agencies to • Medication Compressor & Nebulizer Supplies provide the training you need so that you can care for your child at home. We know that each child is • Specialty Equipment unique, so we adapt to support your individual needs, while keeping your out of pocket costs in mind.

...the small company devoted to the smallest patients...

Children of all ages can wear glasses and contact lenses to correct refractive errors and optimize vision. Their prescription can be measured by an optometrist or ophthalmologist. distorted vision happen at all distances. These conditions are treated with glasses or contacts.

Strabismus is eye misalignment where the muscles of the eye do not move together. The two eyes look in different directions and fail to focus on a single point. This is often referred to as a “lazy eye” and parents may notice it as eyes crossing in (esotropia), turning out (exotropia), or one eye moving up or down compared to the other. This misalignment can sometimes result in poor visual development (amblyopia). Patching therapy can be used to prevent amblyopia while the muscles work to realign. In some cases, special glasses and surgery are needed to help with eye alignment.

Amblyopia is decreased vision in one or both eyes due to abnormal development of vision in childhood. It can be caused by refractive error, strabismus, or other childhood eye diseases (ROP, cataracts, or droopy eyelids). Amblyopia is best treated as early as possible, though some children benefit from treatment started even in the early teenage years (through 14 years). Treatment can include patching, glasses, drops, or even surgery, and is often managed by a pediatric ophthalmologist. Vision screening with your pediatrician is the first line of detection for these problems.

Types of Eyewear

Children of all ages can wear glasses and contact lenses to correct refractive errors and optimize vision. Their prescription can be measured by an optometrist or ophthalmologist.

Glasses come in a variety of frame and lens options. Plastic frames are most popular for infants and small children since they are affordable, flexible, and less likely to hurt children when they fall. Kids can also wear elastic straps attached to the glasses or use wraparound designs to keep them secured while active. Metal frames stand up well to wear and tear and are suitable for older kids.

Young children should always get polycarbonate lenses as they are shatterproof and durable—essential features for young children and those who spend time outdoors and play sports. Other popular lenses include high index lenses, which are thin, lightweight, and often more comfortable for those with high prescriptions.

Encourage kids to pick their own frames to increase chances of them wearing glasses consistently.

Contact lenses are convenient and suitable options for children older than 10 years of age who play sports or prefer to wear contacts for cosmetic reasons. They will need to know how to properly insert, remove, and clean their contact lenses. Contact lens misuse is the number one cause of corneal ulcers, so it is important to choose contacts only after children have demonstrated a commitment and ability to maintain good contact lens hygiene.

However, with proper use, contact lenses can be a safe alternative to glasses—even babies undergoing cataract removal or serious eye procedures may wear contact lenses after surgery.

10 Parenting Children with Special Needs

Cynthia Chow, DO, FAAP provides primary care for children with medical complexity and their siblings at the Beacon Program at Children’s Mercy Kansas City. She is a board certified Pediatrician and Clinical Assistant Professor at University of Missouri Kansas City School of Medicine and University of Kansas Medical Center. She has interests in general pediatrics including preventive care and treating acute and chronic conditions from birth to young adulthood.

Resources for further learning Basics of Vision and Eye Health. Centers for Disease Control and Prevention. Last updated May 13, 2019, accessed 5/2/20. https://www.cdc.gov/visionhealth/basics/index.html

Comprehensive Pediatric Eye and Vision Examination.

American Optometric Association. Last updated February 12, 2017, accessed 5/2/20. https://www.aoa.org/news/clinical-eye-care/aoa-releasesnew-evidence-based-guideline-for-pediatric-eye-care

Cortical Visual Impairment. American Association for Pediatric Ophthalmology and Strabismus. Last updated November 2017, accessed 5/26/20. https://aapos.org/viewdocument/cortical-visualimpairment

Recommendations for Preventive Pediatric Health Care. Bright Futures/American Academy of Pediatrics Periodicity Schedule. https://downloads.aap.org/AAP/PDF/periodicity_schedule.pdf

Vision Screening Recommendations and Guidelines.

American Association for Pediatric Ophthalmology and Strabismus. Last updated 2019, accessed 5/3/20. https://aapos.org/members/guidelines/ vision-screening-guidelines

Visual System Assessment in Infant, Children, and Young Adults by Pediatricians. AAP Policy Statement. Last updated January 2016, accessed 5/1/20. https://www.healthychildren.org/English/health-issues/ conditions/eyes/Pages/Vision-Screenings.aspx

PCWSN.com

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

Ready to Soar:

One Man’s Mission to Give Others Wings

By Chance Copeland

12 Parenting Children with Special Needs

PCWSN.com

M

y second meeting with Doc was nearly two years after the first. This time, in a post-pandemic world, we faced each other on computer screens, but even through a screen on a couch at home he displayed the easy-going calm of a man who knows his purpose.

“Everyone knows me as Doc, but that’s not my real name,” he began. “Stephen is my real name. I was an ER pediatrician, and I got sick taking care of my patients. I almost died, and I spent 46 days in the ICU.” Doc’s story is incredibly unusual: the ICU forgot to give him nutrition, and he lost 75 pounds of muscle mass. He spent nine months in rehab and went home to find that he couldn’t climb the stairs without help. As soon as he could, he went back to work, and despite having a flu shot ended up in the ICU again -- this time with influenza.

“It was then determined that I was the only known person in the world where the diaphragm was half paralyzed on the right. If I had abnormal lungs I would be dead,” Doc explained. “God had his hand on me with that. [The doctors] don’t know why or how that happened, but that’s what happened.”

Against all odds, Doc survived that hospitalization, and shortly after that his second son was born.

“His name is Mark,” Doc said. And Mark is where Doc’s story begins.

“I was out for a week for paternity leave, and on my first day back to work I got a call from my boss to go to a very important meeting at the main hospital.”

As soon as Doc entered the room, he realized that something was amiss. All of his bosses, an entire HR department and two rows of attorneys that he’d never seen before stood before him. They directed him to have a seat and began their meeting.

“They told me that I’d been a wonderful physician, but that I had become a medical risk to the hospital,” Doc said. “They were ending my medical career and I could no longer practice medicine. I tried to change specialties [and found] I couldn’t do anything, so I took the hardest job I ever had in my life: I became Mr. Mom.” Doc loved staying home, but soon realized that Mark had challenges of his own.

PCWSN.com

Parenting Children with Special Needs 13

“When Mark was 8 months old, he had his first seizure and it lasted over 4 hours.”

Doc continued to grow this ministry as a volunteer and care for his son at home until the unexpected happened.

They took Mark for treatment, and although Doc was convinced that he had a brain tumor, it ended up being something much different. At 18 months, Mark was diagnosed with Dravet Syndrome, an incredibly rare genetic seizure disorder. Six months after that, he was diagnosed with autism.

“On November 1st, 2010, my son Mark was cured of his autism and Dravet syndrome when he was born into heaven at the age of 5 and a half,” Doc said. “Every day, he would come home from school and he was just so worn out that we’d lay down for a nap.”

“[My wife and I] went from being physicians taking care of children with special needs to being parents of a child with special needs,” Doc said. “The stress is sky high, and you can’t get the neighbors to babysit for you. It’s even difficult to get grandparents to babysit for you.”

All of a sudden, Doc and his wife were plunged into a world where they essentially felt as though they were left on an island.

“We couldn’t go out,” Doc said.

“When we did we would have the stares, the gawks, and the comments. I can’t tell you the number of times complete strangers came up to me and said I was a horrible parent.”

For Doc, it revealed a problem all too often ignored: lack of education regarding special needs.

“I would have police officers come up to me [during a meltdown] and think I’m endangering my child. This is everyday life for every family with a child who has a disability,” Doc said. “Society doesn’t understand, and we need to help them out.”

Soon, Doc found an opportunity to do just that.

“God opened the doors and made it clear I should be a children’s pastor,” Doc said. “I grew the ministry from one hundred to one thousand kids.”

Having Mark in church with him illuminated another path, too: ministry for adults and children with disabilities. He went to the senior pastor, shared his vision, and was struck by the response: a resounding no.

“He said, ‘I don’t want those kinds of people there,’” Doc explained.

“It was my first experience with [the notion that] churches of all faiths are really not open to accepting families and individuals with disabilities. We had to agree to disagree.”

He continued to serve, and a year later Doc was again called into the office -- this time to remove three adults with disabilities who were loud and vocal from the church service. It was his time to create something new, so he did: a Sunday school class for adults with disabilities.

This day was like any other until Doc put Mark down for his nap.

“He immediately sat straight up in bed and started singing ‘Jesus Loves Me.’ I always called him Bubba, and I said ‘yeah, Bubba, Jesus loves you and so does Daddy.”

Doc covered him back up and sat down in the rocking chair. Two minutes later, Mark jumped out of bed, crawled into his lap and hugged him.

“I can count on one hand the number of times he initiated a hug like that,” Doc said. “I gave him another hug and told him I loved him. He went to sleep and never woke up.”

Despite being shocked, Doc said that God gave their family a true peace that surpasses all understanding.

“You can’t really explain it until you experience it,” he said, and despite the time after Mark’s death that he coined the “year of suckage,” he felt that the only way to heal emotionally, physically and spiritually was to serve others.

“When I get my mind off of myself and I can think of others, it helps me,” Doc said.

So, he decided it was time to leave his church and he set out on a new adventure at Christ Church. After meeting with the Children’s Pastor, he got a conference call from one of the men on staff and his path was made clear.

“They said, ‘Doc, we’ve been praying for years to have a world-class children’s ministry and we believe God brought you to us to start a disability ministry.’ I [told them] ‘I don’t know what I’m doing, but I’d love to try.’”

The rest is history. Ten months after Mark’s death, Doc launched Soar, which stands for “Special Opportunities, Abilities and Relationships.” They started with what they knew they had: three individuals with disabilities. Doc came on board as a volunteer, and in the years since grew the ministry to over 800 individuals. Now, they offer respite, camps, and sponsor a national conference.

In December 2019, SOAR became an individual nonprofit and a local outreach partner of Grace Church, thanks to their support.

PCWSN.com

“Today, SOAR exists to transform the lives of special families and empower them to SOAR in their local and faith communities. We answer three main questions: will my child be able to provide for himself/herself? Who is going to take care of my child once I’m gone? And who is going to take care of me as a parent or caregiver?

These are the questions that kept me up at night with Mark, and it wasn’t until after his death when I talked with my wife and found out they were hers, too,” Doc said.

To answer those questions, SOAR does a lot of work with its families. Monthly, they offer respite for families with children or adults who have special needs. They have a full medical team on staff to help. They also offer a sibling night.

“We give [siblings] a chance to be with other kids who get it,” Doc said. “We also host a summer camp each year to focus on abilities, not disabilities. It’s not just special needs -- it’s mental health, and medically fragile individuals too.”

Doc also continues the work he started in his own church by helping other churches become more inclusive of all people regardless of ability.

“I firmly believe that every family with an individual with a disability should be allowed to go to a place of faith of their choosing. Only 11 percent of churches welcome families PCWSN.com

with disabilities. The big reason is lack of understanding and education, so SOAR comes along to assist and train churches in creating disability ministries. Our goal is to assist 1,000 churches in the next 5 years,” Doc said. “We’ve already assisted 400 in the US and other countries.”

To put it simply, Doc is someone who dreams big. In the next few years, he has ambitions to open a job training center, create independent living facilities, and continue partnering with outreach programs in other countries. He wants to create a mentorship program where new parents of children with special needs can pair up with an established parent. Why, one may ask?

He can answer this question, too: “I’ve had a lot of stuff go on in my life. I’ve lost my health and two major careers, I lost my son. I could take the perspective of woe is me, but instead I choose to ask how I can help others. I thank God for everything that has happened in the past that allows me to do what I’m doing,” Doc said. “Soar is Mark’s legacy living on within us.”

Every day that Doc gets up, he proves that it is another day to share Mark’s legacy by teaching others how to SOAR. To find out what SOAR is doing and how you can help, please visit https:// soarspecialneeds.org/.

Parenting Children with Special Needs 15

ADVERTISEMENT

Experiencing the Unknown: the Hatch Family Story

By April Hatch

he would go home, eat, and be asleep by 8 pm. He was exhausted right? No big deal after a long day of school and football.

It wasn’t until 3 am that I woke up to my son crying and gripping his head, “My head hurts! My eyes!” As a previous ER nurse, I immediately realized I missed the mark, and I should have put him on concussion protocol as soon as I heard those words in the car.

I should have made sure he was in a dark room without access to screens, and I should’ve been checking on him frequently.

On September 10th of 2015 my life changed. My son’s life changed.

Our whole family’s life changed. What would go from a young boy having fun playing on a freshman football team with his friends would turn into a nightmare we never expected.

That late afternoon I went to watch my son play football and it honestly seemed like any other game. I wasn’t paying too much attention but was instead chatting it up with other parents in the stands. I would shout, “Yay!” when they scored and quickly went back to my conversation. So, I don’t remember seeing him being assisted off the field by his teammates or being evaluated by the trainer on the sidelines.

The first indication I had that something was wrong was when I picked him up at the school and he confessed he got hit pretty bad, was dizzy and had a headache, and probably should’ve stopped playing. But complaints of pain or a minor injury after a game were pretty typical. In the past it was an elbow we would put ice on or a skin abrasion that would get some antibiotic ointment.

I had Tylenol and Ibuprofen in my car at all times and it wasn’t uncommon for me to say, “Here, take this,” and that would usually be the last time I would hear about it. On the night of Sept 10th 16 Parenting Children with Special Needs

After a while my mom and nurse tricks worked, and I was able to calm him down and get him back to bed. I was sure it was “just a concussion” and sat up and waited until a local sports medicine clinic was open to find out what we needed to do next. Fortunately, we were able to get in a few hours later. I was tired, worried, and experiencing some serious mom guilt when I watched him complete the Impact Concussion Test and the physician complete his physical exam.

I don’t remember all of the details, but I gathered he didn’t fare so well, and we were to follow-up in two days. No school and definitely no football. At that next appointment is where it all starts to become a blur. He was worse so there was a cat scan, a prescription, speech therapy, and physical therapy. At each appointment there would be something new-another test, another medication, another referral. As a nurse who had worked for ten years in healthcare, I had lost a lot of confidence in that system, but I still believed the doctors had the answers. I hoped that it would quickly run its course and life would go back to normal in no time.

It wasn’t until four years later that it would be. See, what I did not learn in nursing school were the silent symptoms of a traumatic brain injury (TBI) or what post-concussion syndrome was. As PCWSN.com

ADVERTISEMENT

a mom, no one warned me that my son could get hurt playing football and it could lead to him having to leave school, me having to quit a job and that each and every night I would be scared to fall asleep. Not because he was dizzy or had a headache, but because his behavior and personality changed so drastically that I was worried he would choose to no longer continue his life. Now, it didn’t get to this overnight. First it started with what reminded me of a toddler throwing a tantrum, then the holes in the wall, the incident on the highway, and the suicidal thoughts and attempt. He had seen three specialists at this point, had regular appointments with a psychologist, and was on three different prescriptions, but things just continued to get worse. I was neglecting my husband, my other children, and myself. I said good-bye to a good income, benefits, and a life I really enjoyed and felt fulfilled professionally.

I thought I was doing everything I could, worried if I wasn’t doing enough or worried, we were doing too much. Was there something I could do or a doctor out there who could fix him? Did we need different medications? None at all knowing the risk of putting teenagers on psychotropics. Around this same time there were a lot of stories in the news about children taking CBD for seizures or adults consuming medical marijuana for anything from migraines to cancer. Maybe there was a safer alternative out there? Maybe cannabinoids like CBD and THC actually could bring him and our lives back into balance?

cannabis worked when before I didn’t know the difference between CBD and THC. I was scared of the potential consequences on his young, developing brain. I just wanted him to live a regular life, so we decided to give it a try. We started with making infusions and edibles at home that I would try on myself. I was scared of losing my kids and nursing license, but I was more scared to lose my son.

Today, my son is a successful young adult. He has achieved what I never thought he would. Trying those infusions myself quickly showed me I didn’t need a drink to get to sleep, that I could enjoy my family and myself again. Every person in my household can tell you that cannabis changed everything for us and we are honored to share our story with others.

April Hatch is the Co-Founder of Cannabis Care Team, an organization dedicated to providing the education, support, and advocacy patients need to consume cannabis safely and effectively. For questions about medical cannabis, call 888-810-WELL (9355).

Thank you to

We talked to a few doctors about it and got the same answer from all, “Well, we really don’t know.”

I wanted to know so I decided to find out for myself. I read study after study, books filled my bedside table, and I learned how PCWSN.com

for sponsoring this editorial.

Parenting Children with Special Needs 17

Therapy

Gentle Teaching

Photo courtesy of www.gentleteaching.com

By Kari Wiss

I

n a world where we have faced the unimaginable and there continues to be so much unknown, there is one thing that keeps us on our path…our children. As parents, we continue to navigate these unchartered waters because we love our children and, well, because we must. As difficult as it may be for any parent, the struggles and worries are doubled for those who parent children having special needs.

Parenting children with various needs poses additional challenges on an everyday basis. No one knows that better than you. From juggling school, therapies, doctor’s appointments, dinner…oh, and your other children who also need you, it can be exhausting.

‘When you are with me, you are safe and loved’—Dr. John McGee. These two words, safe and loved, are the basis of caregiving at any level and were introduced in the 1980’s by Dr. John McGee. I was fortunate to know Dr. McGee for many years before his unexpected passing in 2012. His whole presence was focused on helping people to feel safe and loved. Through Dr. McGee’s teachings, countless lives were touched and changed for the better. Gentle Teaching is now in countries worldwide and continues to become more recognized as a true way of supporting people who are vulnerable, including our own children in today’s world.

18 Parenting Children with Special Needs

Loving our children, although exhausting at times, can be an easy concept for us as parents to understand. Of course we love our children! Safe, on the other hand, can be more challenging especially in our ever-changing times.

The Gentle Teaching philosophy starts with a basis of helping children to feel safe, not just be safe. There are many aspects to helping a child feel safe…comforting words, a blankie or favorite stuffed animal, the lap of a parent. To get to that point, there must also be an understanding of helping children to physically be safe…having enough food to eat, adequate clothing for the weather changes, and a roof over their heads. However, we know from our own experiences we can be safe, but not necessarily feel safe.

I happen to be deathly afraid of the dark. In my own home, where I’ve lived for over 20 years, I am convinced monsters come out when the lights are off. I logically know this is not true, but my underlying fear of the unknown in the dark supersedes any logic in the moment when the electricity goes off. I distinctly remember an incident when a freak accident caused our lights to go out when my children were young, probably around the ages of 4 and 7. Being the parent, I wanted to be strong in the moment and comfort them. As my palms instantly became sweaty and my heart began to race, my kids seemed unphased by the sudden darkness. My PCWSN.com

oldest knew where the flashlight was next to my bed and made his way there bringing back a stream of light to his younger brother and paralyzed mother. In that moment I realized how our fears, no matter how illogical or crazy they may seem, are our own true and very real fears. I knew I was safe. My brain told me I was safe, but my heart and physiological senses were telling me otherwise. And this leads me to the question we are all facing…as a parent, how can we help our children feel safe, in all the unknown?

Consistency, compassion, and unconditional love are keys in helping our children to feel safe with us. Dr. McGee once said, “Gentle Teaching is about unconditional love…it focuses on teaching (them) a sense of companionship.” According to the Gentle Teaching International Website, ‘Feeling safe is the foundation for building trusting, meaningful relationships; this includes feeling emotionally, physically, psychologically and environmentally safe’.

One story I learned about in my one of my undergrad courses kept with me all these years and I come back to it often when I think of how Gentle Teaching’s philosophy of helping people feel safe really boils down to the simple acts of human connection. Less than 100 years ago, a study was conducted to determine if babies could survive without affection. Forty newborns were split into two separate groups of twenty each. Both groups of babies received basic care…food, clothing, roof over heads, etc.

SOAR General Ad - no bleed - purplepng.pdf

1

9/22/21

One group of babies were nurtured, cared for and comforted when they cried. The other group had caregivers who were instructed not to make eye contact or touch the babies more than necessary.

The study was stopped after only four months, at which that time half of the babies in the second group died. It was recorded that shortly before death, the babies stopped crying or trying to engage with caregivers. Later, researchers believed the babies suffered from failure to thrive. Think about the NICU at the hospitals. Volunteers spend hours upon hours just holding babies and soothing them.

The human connection is so important and vital to our world, and it’s such an easy solution.

It all truly comes back to safe and loved. The ripple effect of helping our children to feel safe and loved will trickle through our world and can be both mesmerizing and impactful. For me, through Gentle Teaching I became a better mother, spouse, coworker, and teacher. I will forever be grateful to Dr. John McGee and Gentle Teaching. For more information, visit the Gentle Teaching International website at www.gentleteaching.com.

Kari is a Special Education teacher and has over 20 years experience working with individuals having intellectual and developmental disabilities.

8:33 AM

C

M

Y

CM

MY

CY

MY

K

PCWSN.com

Parenting Children with Special Needs 19

PRACTICAL

Matters

IEP Advocacy:

By Samara Klein

Take Action Now Despite Pandemic Uncertainty

By Samara Klein, Attorney

F

ew of us imagined that the pandemic caused by Covid-19 would still be impacting education as children return to school in the fall of 2021. Many parents of special needs children are dealing with a reality that their children have made minimal progress or may even have regressed. Parents are also still struggling to get an appropriate IEP and sometimes incorrectly being told that because of the pandemic certain services cannot be provided or even that accommodations cannot be made.

In the meantime, parents and guardians of children with disabilities are trying to find their way through many uncertainties in a dynamic situation. These uncertainties include ongoing issues with masking, covid rates, whether vaccines will be available to younger children, in-person vs. online learning.

Some parents might understandably but wrongly assume that because of how fluid and ever changing the covid pandemic is that it might make sense to take a passive approach to the IEP process or to 504 accommodations. However, being passive now is the worst approach to take in ensuring your child gets the maximum benefit from special education and may

20 Parenting Children with Special Needs

determine services to your child in the future even if the pandemic subsides.

Unfortunately, children and especially children with special needs may be permanently impacted by going without services and accommodations during crucial stages of their development.

Moreover, because of how the IEP process works, being proactive now will likely determine the quality and degree of services your child gets in the future even if the way services are delivered needs to be modified.

The best way to be proactive is to know your rights and your child’s rights. The United States Department of Education has offered guidance during the pandemic through joint memos of both the Office of Special Education Programs and the Office of Civil Rights.1 Here are some key points to know that came from this guidance and from other legal authorities moving forward: IDEA and 504 have never been on lock down. All the rights children and their parents and guardians have to receive a free and appropriate education under both the Individual with Disabilities in Education Act (IDEA) are Section 504 of the Rehabilitation Act have remained in place from the start of the pandemic. There were

proposals to put a freeze on services under IDEA in the earliest phases of the virus, but importantly that never happened. Likewise, accommodations under 504 were never put on freeze.

The methodology of how services are delivered has often been altered but that does not mean that what is being worked on with the student and what the students should be accomplishing has changed.

Identification and evaluation of suspected disabilities and reevaluations required under IDEA has never been lifted. If you have put off asking for your child to be identified for an IEP or getting or being evaluated. The methodology may have changed, but the district should still be being resourceful in moving forward.

Children who have disabilities have been entitled to a free appropriate education from the beginning of the pandemic. A free and appropriate education under IDEA requires an IEP with ambitious objectives in light of the child’s circumstances. This is the standard that was set by the supreme court in 2017.2 This standard is really based on many factors but is higher than the standard than “a floor of education” which most courts applied to cases in the past PCWSN.com

Many children may be entitled to a compensatory education/ or compensatory services because of the pandemic. This may be one of the most important things to know. A “compensatory education” is a right that has been recognized by the Supreme Court as an equitable remedy when there has been a denial of FAPE. It has been described as “services prospectively to compensate for a past deficient program”. 3 At the beginning of the pandemic, the Department of Education (DOE) used the term “compensatory services”. That is probably because the term “compensatory education” is usually ordered through a third-party, like by a hearing officer at a due process hearing. However, when the DOE used the term “compensatory services” it seemed like it was referring to the same idea of making up for a deficiency. The difference is due the pandemic school districts have been instructed to consider compensatory services as part of the IEP process when needed for the child to receive FAPE. Do not take “loss of funding” because of the pandemic as an excuse by a school district to refuse services and do not let it make you feel guilty. School Districts have received funds through three different stimulus disbursements during the time period of the pandemic and may actually have more funds than pre-pandemic. Of course, IDEA has never been fully funded by congress and this has always been an ongoing issue that parent advocates should push for full funding. However, the pandemic has not left districts less able to cover special education. Like anything, whether the funding that Districts received goes to IDEA services and accommodations is a matter of speaking up. It also should not mean that the entire burden of providing a FAPE falls on the teacher to just do more.

The schools need to provide support and resources so that the District is providing a FAPE. Finally, IDEA is data driven. However you or the District may subjectively feel about a child’s progress, documentation and measurement are crucial at every stage. Without data it is difficult to measure what progress a student has made, when the progress was made, and what is and is not working.

Given the above principles, let’s walk though how acting now makes a difference. Focus on ensuring your child has challenging goals and objectives and then work on getting the best data you can to track your child’s progress.

If your child has already been identified under IDEA, you need to try to develop strong IEP goals for your child even if you have many concerns and unknowns about the year ahead. What happens in terms of Covid-19 may change the location and methodology and even timing of achieving those goals, but if the goals were reasonably ambitious for your child in the first place, then you have a strong argument for expecting to see those goals achieved or to receive services to make up for what is lost.

The goals should be specific, well-written, and measurable. Having the goals broken down into objectives to be achieved and time frames for when progress will be measured is important.

The challenging goals should be based on where your child is now and how much can be expected in terms of your child’s progress.

It is true that goals are not set in stone and sometimes goals are simply not reached and may have not been realistically achievable.

However, the assumption starts with that a goal was achievable and if a child fails to achieve many goals or is not making progress PCWSN.com

on objectives within the goals, as the parent or guardian you have a much better chance of arguing that the child did not receive FAPE. Under the guidance from OSEP, the district may still need to provide compensatory services and should discuss that as part of the IEP process itself.

If your child has not been evaluated for an IEP, the evaluation itself will also give you a baseline for where your child was at when you asked for the evaluation. You can also present information you already have to the district to review. If you disagree with the district’s evaluation you can ask for an independent evaluation.

Going through the evaluation process, you will have a baseline to gauge your child’s progress by and goals with further data collection to track your child’s progress.

If you decide to not pursue an IEP because of pandemic uncertainty, you are losing significant ground in not only starting services but in having any good way to document what is turning into a large portion of time without services. There is still an argument that can be made that the district was required to identify your child under IDEA child find requirement, but this argument is harder to make and still results in a deficit in terms of tracking your child’s progress.

Special Education can be difficult to understand, even without an ongoing pandemic. There are many good online resources where you can learn more about issues such as writing good IEP goals or getting a good independent evaluation. You can find a list of resources here: http://sklein-law.com/klein_law_firm_008.htm

References 1 Department of Education, Questions and Answers, March 2020, Department of Education, Supplemental Facts, March 2020, and Department of Education Questions and Answers September 28, 2020.

2 Endrew F v. Douglas County School District, 137 S. Ct. 988 (2017).

3 Draper v. Atlanta Independent School, 518. F3d 1275,1280(11th Cir. 2008)

SAMARA KLEIN is owner of The Klein Law Firm.

She has more than 25 years of experience as an attorney, leader and advocate in the nonprofit community. Ms. Klein has advocated for individuals with disabilities throughout Missouri, in the metro Kansas City area, and in the United States. She has fought for and secured services for children in special education cases under the Individuals with Disabilities in Education Act (IDEA) and Section 504 of the Rehabilitation Act and has also served as an administrative hearing officer for four years for the state of Missouri in special education cases. As the executive director and cofounder of a nonprofit organization advocating for health care benefits for children with special needs, Ms. Klein also has acquired extensive knowledge of advocacy in the healthcare system. Ms. Klein is admitted to practice in Missouri and before the U.S. District Court, Western District of Missouri and Kansas. She earned her J.D. degree from the University of Kansas Law School. sklein@sklein-law.com • www.sklein-law.com • 816-682-3080

Parenting Children with Special Needs 21

How Do I Parent My Adolescent with Special Needs?

Helping parents grow healthy teens.

By Dr. Liz Matheis, PHD Originally Published July 21, 2021 on Psychology Today. Used with Permission from the Author

Key Points:

• Communication with your adolescent child is key to their growth.

• Setting expectations can help them build self-esteem.

• You may want to make life as easy as possible for your child, but some amount of struggle will help them.

Raising an adolescent is hard. Their moods change quickly—one minute they’re angry and raging, and the next, they’re a pile of tears in your lap. They want independence and freedom and yet they are afraid of it. They want you to tell them what to do, but they don’t want your advice. They want you to listen, but then they tell you to go away. The mixed messages are intense. I know. I have two adolescents, one of each gender.

But what happens when that teenager is a child with special needs? For many children with special needs, the developmental milestones and struggles are the same but on a different timetable.

If you have a comparison point with another child—a niece or nephew—you are likely going to notice that your teen’s development is not all that different.

22 Parenting Children with Special Needs

What are My Teen’s Needs?

For many teens with special needs, the main areas of growth and development are in the areas of: • Becoming independent • The need to feel heard • The need to feel validated • Building an identity • Have a sense of self and self-esteem These are the areas that neurotypical adolescents struggle with as well. Our goal as parents is to understand what our children need from us in an effort to guide them through their growth.

And if you don’t know, ask your teen • “What do you need from me?”

• “How can I support you?”

PCWSN.com

Ask these questions instead of guessing or trying to figure them out on your own. You will gain information directly from your child which will give you clear-cut communication. Your teen will also feel heard and you may notice a sense of relief, decreased anxiety, and agitation. This will also keep the conversation with you open and direct.

Hold Your Teen to Standards

As a parent of a teen with special needs, we often recognize their struggles and areas of weakness and attempt to lower our demands for them so as not to make them “feel bad”. The truth is, we need to hold our teens to standards, high ones. Because when we do, they tend to grow. You may not expect your child with a learning disability to write a novel or your child who has physical or motor struggles to run a marathon, but your teen can take out the garbage, contribute to family meals, or empty the dishwasher.

Ask your teen about their goals: socially, physically, academically, artistically, athletically. Help them to create a plan to reach those goals. Help them to see that there are steps in between the end goal and the start point.

Give your teen responsibilities even when they moan and groan about how they “can’t” or “don’t want to.” That piece

is normal. Offer an allowance or pay for their household responsibilities, if that’s motivating. You may find yourself wanting to make life a little bit easier, but don’t. That will actually inadvertently communicate the message that your child is not capable or needs help.

Each time you set the bar for your child, he or she will reach it and feel good about their ability to accomplish tasks and goals. This also helps to build executive functioning skills of time management, prioritization, and scheduling.

Raising teens is a tough job. Their need for care has changed from physical to emotional and on their time and their terms. Challenge them and help them grow at their own pace.

Dr. Liz Matheis is licensed Clinical Psychologist and certified School Psychologist who specializes in treating the whole child, adolescent and young adult which includes home and school, emotionally, socially and behaviorally. She has built her practice, alongside her husband, Robert Matheis, who is also a Clinical Psychologist, in 2008. The practice remained part-time until 2012 when Dr. Liz left the school system and worked out of her home office for 5 years!

Call Today!

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

Call Stephanie @ 816.217.7486

NEW! PCWSN Magazine is now available online!

Visit our new website

PCWSN.com

DON'T MISS OUT! Sign up for the Parenting Children with Special Needs Emails!

Get the newest issues right to your email.

Plus events and special editorial just for you!

Kansas City

FREE Publication • Also available online at PCWSN.com

/ Volume

10 : Issue

Kansas City / Volume 10 : Issue 3 / PCWSN.com

1 / PCWS

N.com

Kansas City

HOW TO PARENT TOGETHER: How to Create a Parenting Alliance For Your Child with Special Needs

ENHANCING TRANSPORTATION ACCESSIBILITY

It's All About Teamwork:

How a Dream Changes Lives

St. Louis / Volume 1

“The Little Things”

: Issue 3 / PCWSN.com

Kansas City

My Miracle Child

ADVOCACY AND AWARENESS IN 2020

Life with Robbie

10 : Issue

DRIVING WITH SPE CIAL NEEDS:

EW, THAT’S GROSS

Understanding and Dealing with Food Sensory Issues

BEING A SUP THE LITTLE ER PARENT IN THINGS MOMENT THE

A Conversation with Jenettie Kauten

KC’s Only Missouri’s Comprehensive Health and Services Resource Guide

id of My I’m Not Afra Mental With a Daughter Afraid of Illness. I’m Doesn’t World That gh.

Care Enou

When and How to Best Prepar e Your Child

SEX ED: YOU Pediatric Health andWHAT TO ServDices Res NEE ource Gui de KNOW

PCWSN.com

ce Guide

N.com

The NATURE FOR JoALL: hnson

Family and the connect, and grow Pursu of “Bette it r”

“Go Get ld, the Wor HOW TO ” ild Ch NAV IGAT

ey with EvyE A Journ MED ICAL TRANSITION S DING UNDERSTAN LTH: HEA OR BEHAVI PORTING REMEMBER SUP LD ME? TheYOU SpeciaR CHI

of a Child

l Needs of Siblings with Specia l Needs

KC’s Only

When and How to Best Prepare Your Child

and Services Resour

4 / PCWS

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

DRIVING WITH SPECIAL NEEDS

STL’s Pediatric Health

10 : Issue

SN.com

2 / PCW

A Conversation with Jenettie Kauten

OCCUPATIONAL THERAPY: An Evidenced-Based Intervention for Children and Adolescents with Developmental Delays

/ Volume

/ Volume

and Ser ic Health y Pediatr KC’s Onl

vices Res

Pediatric Health and Serv

ource Gui

“Nothing Holds Him Back” A Story of Survival

BEDTIME AND MORNING ROUTINES: THE BASICS MAKING MEMORABLE MANAGING VACATIONS AND BEHAVIORS TOUGH MEETING SPECIAL MEANS NURTURING NEEDS BRAINS & BONDS KC’s Only Pediatric Health and Services Resource Guide

READY, SET , GET WET Medical Equipm : ent and Swimming

ices Resour

ce Guide

de

Parenting Children with Special Needs 23

How to Stay Healthy through Cold and Flu Season November is the perfect time of year. The air is cool, the holidays are coming, you’ll soon be with friends and family…and everyone is getting sick. It’s just what happens in late fall. At least that’s what we’re led to believe. But could you and your family stay healthy during cold and flu season (not to mention COVID-19)?

One of the best ways to not get sick this year is, of course, to not be around others who are sick. But with work and school in full swing, in addition to holiday get-togethers, that can be a little challenging. Here are some of the next-best things you can do to stay healthy as we head into the holidays.

Wash Your Hands We touch a lot of things during the day, and kids definitely touch a lot of things that other kids have touched. Getting everyone in the habit of washing your hands for 20 seconds before and after meals, after blowing your nose, and before you touch your face will go a long way in helping to keep colds and flus at bay.

Use Hand Sanitizer There are some times when washing your hands just isn’t feasible, namely when you’re out and about. Keep alcoholbased hand sanitizer in the car, diaper bag, and your purse to help your family stay healthy. For school-aged kids, put a small bottle of sanitizer in their backpack.

Don’t Touch Your Face (Unless You’re Covering a Sneeze or Cough) Kids are notorious for touching their faces—a lot. Starting them early with a habit of not touching their faces can be hard, but gentle reminders are definitely helpful. Also, be sure that you’re aware of touching your own face, as you’re the best role model for good behavior.

Keep It Clean: Disinfect High-touch Areas High-touch areas can hold on to germs, and since everyone—healthy and sick alike—touches them, they should be cleaned regularly. These areas include, at a minimum, doorknobs, faucets, and toys. If your children use your mobile devices or hold on to your keys, add those to the mix as well.

Update Your Vaccines One of the very best ways to stay healthy during cold and flu season is by keeping your vaccinations up to date.

These include the standard childhood vaccines, as well as an annual flu shot and the COVID-19 shot. Approval for children as young as six is expected for the COVID-19 vaccine this fall, and infants from six months are eligible for the flu shot. If you haven’t yet updated your children’s vaccines, call our office to schedule your appointment.

We’re Ready!

A safe and effective vaccine to protect our 12+ patients is here now!

Raintree • Blue Springs • Lee’s Summit 28 providers between three locations

Tel. (816) 524-5600 Fax. (816) 525-2697

communitychoicepeds.com

ResourceGuide

Advertise Here and Online!

Kansas City / Volume

10 : Issue 3 / PCWSN.

com

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

BEDTIME AND MORNING ROUTINES: THE BASICS

doctorspracticinglaw.com

Adults with Disabilities

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

Asthma/Allergy

Allergy and Asthma Network Mothers of Asthmatics Strives to end asthma deaths and suffering on a national level. • aanma.org • 800.878.4403 Asthma and Allergy Foundation of America Improves the quality of life for people with asthma and allergic diseases through education, advocacy and research. • aafa.org • 800.727.8462 Asthma and Allergy Foundation St. Louis Asthma and Allergy Foundation of America Improves the quality of life for people with asthma and allergic diseases through education, advocacy and research • 314.645.2422 • Aafastl.org The Food Allergy Network (FAN) Raises public awareness, provides advocacy and education, advances research on behalf of those affected by food allergies and anaphylaxis • foodallergy.org • 800.929.4040 Gateway Asthma and Allergy Relief • 618.277.1413 or 314.421.0663 • www.asthma-allergyrelief.com Allergy, Asthma & Immunology Institute of St. Louis Resource for the diagnosis and treatment of patients with allergic conditions and immunologic illnesses. • 314.833.5309 • www.allergyasthmaimmunologyinstitutestl.org

PCWSN.com

Arthrogryposis/Arthrogryposis Multiplex Congenita

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

Attention Deficit Disorder

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

Autism

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

“Nothing Holds Him Back”

NATURE FOR ALL:

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

KC’s Only Pediatric

A Story of Survival

MAKING MEMORABLE VACATIONS AND MEETING SPECIAL NEEDS Health and Services

Resource Guide

BCBA to work with your child in developing skills and addressing behavioral needs.

• autism.concepts.com • 800.345.0448 Autism Concepts Offers behavior analysis (ABA) and verbal behavior analysis (VBA) for children with autism spectrum disorders, language delays, challenging behaviors and other developmental delays. In-home ABA services that includes a team of therapists and a BCBA to work with your child in developing skills and addressing behavioral needs. • autism.concepts.com • 800.345.0448 Great Circle Provides educational (K-12) and in-home/in-facility respite services, and 24/7 residential care for ages 6-21. Highly trained therapists use behavior analysis (ABA), provide developmental/social and life skills/occupational training, psychiatric care, and parent education and supports.

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

• 1.800.780.6545 • www.judevine.org MO-FEAT MO-FEAT (Missouri Families for Effective Autism Treatment) provides an outstanding 187-page Statewide Autism Resource Directory. MO-FEAT also coordinates the “A-List,” a “parents only” discussion list about Missouri special education resources and issues in autism. Parents can apply to join by contacting MO-FEAT at info@mofeat.org or call 314.993.0806 or 800.275.8988.

Autism Society of the Heartland Provides support, education and advocacy for the autism community. • asaheartland.org • 913.706.0042 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

Parenting Children with Special Needs 25

ResourceGuide

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

BECOME A SPONSOR!

Guide also available on PCWSN.com

Contact Us: stephanie@pcwsn.com

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

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, 26 Parenting Children with Special Needs

Kansas City, and Truman Medical Center.

Lakewood, 7900 Lee’s Summit in Kansas City.

• biaks.org • 800.444.6443 Brain Injury Foundation of St. Louis Provides innovative community-based solutions to meet the specific social and vocational needs of individuals with brain injuries. • 314-645-7230 • bifstl.org

Brain Tumor

American Brain Tumor Association Strives to eliminate brain tumors through research and to meet the needs of brain tumor patients and their families. • abta.org • 800.886.2282 Pediatric Brain Tumor Foundation We offer free educational resources about brain tumors, a toolkit for newly diagnosed families, college scholarships and much more • curethekids.org • 800.253.6530 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 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 American Cancer Society/St. Louis • 314.286.8100

Cerebral Palsy

4MyChild Provides a comprehensive resource and compassionate voice for all things related to caring for a child with Cerebral Palsy, Erb’s Palsy, and other neurological injuries. • cerebralpalsy.org • 800.692.4453 Cerebral Palsy (CP) Center at St. Louis Children’s Hospital The CP Center at St. Louis Children’s Hospital helps children with cerebral palsy achieve maximum physical, intellectual and emotional development. Sports programs and Camp Independence offer fun ways to grow and develop throughout the year!

• 314.454.KIDS (5437) • StLouisChildrens.org

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

• 314.454.KIDS (5437) • www. StLouisChildrens.org Cerebral Palsy (CP) Center at St. Louis Children’s Hospital The CP Center at St. Louis Children’s Hospital helps children with cerebral palsy achieve maximum physical, intellectual and emotional development. Sports programs and Camp Independence offer fun ways to grow and develop throughout the year!

• 314.454.KIDS (5437) • StLouisChildrens.org St. Louis Children’s Hospital Cleft Palate and Craniofacial Institute The largest and oldest center of its kind in the Midwest. The team has treated more than 4,000 patients with cleft lip and palate, and another 2,800 with major craniofacial anomalies.

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

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

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

PCWSN.com

SPONSORED BY

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

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

Cystic Fibrosis

Diabetes

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

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

They specialize in excellence in auditory-oral deaf education for children birth to 12. Generous private support makes CID affordable for families of children with hearing loss who qualify, regardless of ability to pay. • 877.444.4574 • www.cid.edu Able Hands Interpreting Services Provide interpreting services with flexibility and choice. • ablehands.net • 816.838.4263 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 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

PCWSN.com

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

National Down Syndrome Society Serves as the national advocate for the value, acceptance and inclusion of people with Down Syndrome. • ndss.org • 800.221.4602 Down Syndrome Guild of Greater Kansas City Provides support and rescourses for individuals with Down Syndrome and their families.

• kcdsg.org • 913.384.4848 Down Syndrome Association of Greater St. Louis Benefits the lives of people with Down Syndrome and their families through individual and family support, education, advocacy and public awareness.

• 314.961.2504 • www.dsagsl.org

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

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

ResourceGuide

Guide also available on PCWSN.com 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

First Steps First Steps offers coordinated services and assistance to young children with special needs and their families. First Steps is designed for children, birth to age 3, who have delayed development or diagnosed conditions that are associated with developmental disabilities. Families can contact their local First Steps office for more information by calling toll free: 866.583.2392 • 573.751.5739 • www.mofirststeps.com Great Circle Provides accredited K-12 education for children with emotional/behavioral challenges, communications disorders, autism spectrum diagnosis, and Missouri’s only high school program for teens in substance use recovery. Each classroom blends academics and therapeutic services to help children who struggle in a traditional classroom setting.

• Greatcircle.org • 844.424.3577 (GCHELPS) 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 unique program that involves parents and siblings in the process of therapeutic treatment and education. The Center provides services to any child

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

BECOME A SPONSOR!

Guide also available on PCWSN.com

Contact Us: stephanie@pcwsn.com

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 Delta Gamma Early intervention services for children with visual impairment. • 314.776.1300 • www.dgckids.org Special School District Resource Center - St. Louis Knowledgeable staff and a wealth of information for families of children with disabilities. • 314.989.8100 • www.ssdmo.org/cool_tools/fcrc.html

Epilepsy

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

• cececares.org • 312.207.2369 ext. 225 Epilepsy Center at St. Louis Children’s Hospital A Level 4 epilepsy center, Children’s Hospital has the expertise and technology to provide the highest-level medical and surgical evaluation and treatment for patients with complex epilepsy.

• 314.454.KIDS (5437) • www.StLouisChildrens.org Epilepsy Foundation of the St. Louis Region Prevention, education, and advocacy services to people with seizures, their families, and the community. Includes employment, independent living, and social services. • 314.781.4949 or 800.264.6970 • www.epilepsyfoundation.org

Fragile X

Fragile X Resource Center of Missouri Provides support and information to individuals with FXS and their families. • www.fragilex.org/ 28 Parenting Children with Special Needs

community/community-support-network/southwest/fragile-x-resource-center-of-missouri/

General

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 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

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

• capper.easterseals.com • 785.272.4060

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

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

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

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 Missouri Developmental Disability Resource Center (MODDRC) Offering a network of support options so that individuals and families are well informed, hopeful, connected within their communities and know they are not alone in their experience with disability. • moddrc.org • 800.444.0821 Missouri Parents Act (MPACT) Assisting Missouri parents in their effort to effectively advocate for their children’s educational rights and services. • missouriparentsact.org • 800.743.7634 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

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 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 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

PCWSN.com

SPONSORED BY

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)

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

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

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

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 Easter Seals Disability Services Services to adults and children with disabilities, including early intervention, play therapy, camping, respite care, leisure activities, child development, and family support. • 314.432.6200 • www.eastersealsmidwest.org Family Resource Center Located on the 3rd floor of Children’s Hospital.

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

• 314.454.2350 • www.stlouischildrens.org Great Circle Offers a wide spectrum of behavioral health services for children and families who are facing difficult life challenges. Programs include accredited K-12 education with therapeutic services, 24/7 care, intensive outpatient therapies and community counseling services, and in-home/community-based programs to strengthen families and reduce at-risk behaviors.

• Greatcircle.org • 844.424.3577 (GCHELPS) Kids Enjoy Exercise Now (KEEN) Provides free one-to-one recreational opportunities for children and young adults with mental and physical disabilities. • 314.259.5980 • www.keenstlouis.org

PCWSN.com

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

• 573.659.0678 or 1.800.392.8667 • www.moadvocacy.org MPACT Parent Training and Information A statewide parent training and information center serving all disabilities. MPACT’s mission is to ensure that all children with special needs receive an education that allows them to achieve their personal goals.

• 1.800.743.7634 • www.ptimpact.org

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

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

• Supplemental Security Income (SSI) benefits are payable to children under 18 years old who have disabilities and limited resources.

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

• 1.800.772.1213 • www.socialsecurity.gov/ applyfordisability/child.htm

ResourceGuide

Guide also available on PCWSN.com St. Louis Arc Support and services to adults and children with intellectual and developmental disabilities, and their families. Belle Children’s Services of St. Louis Arc offers an inclusive Center-Based Preschool that allows children with disabilities opportunities to be included in a typical classroom. They also provide outreach services offering therapy for children in the community, parent education programs on topics like development or legal issues, and workshops that help support parents and siblings of children with disabilities. • 314.569.2211 • www.slarc.org St. Louis Children’s Hospital Center for Families (formerly Family Resource Center) The Family Resource Center (FRC) provides free resources about a child’s specific illness, diagnosis or developmental stage. Staffed by pediatric nurses and librarians, the FRC creates customized health information packets for families. The FRC is 100% funded by generous donors to the St. Louis Children’s Hospital Foundation. • 314.454.2350 • www.StLouisChildrens.org/FRC St. Louis Public Library Provides parents and children with support through storytimes, sensory play activities, books, toys, resources and more. Visit slpl.org for more information.

St. Louis Regional Center Service coordination for anyone with a developmental disability, such as mental retardation, cerebral palsy, head injuries, autism, epilepsy, certain learning disabilities. • 314.244.8800 or 1.800.358.7665 • www.dmh.mo.gov/dd Team Activities for Special Kids (T.A.S.K.) T.A.S.K. provides year-round instructional sports program that provides athletic and social opportunities to kids with special needs. The purpose of the program is to help build self-esteem and skills in children with special needs. • 636.343.TASK (8275) • www.tasksports.org

Genetics

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

Grief and Hospice Programs

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

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

BECOME A SPONSOR!

Guide also available on PCWSN.com

Contact Us: stephanie@pcwsn.com

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

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

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)

Learning Disabilities

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

• 314.872.5050 • www.stlouischildrens.org/

Hemophilia

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

Hydrocephalus

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

Legal

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

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

Kidney Disease

National Kidney Foundation Serving Kansas and Western Missouri Striving to prevent kidney and urinary tract diseases, improve the health and well.being of individuals and families affected by these diseases, and increase the availability of all organs for transplantation. • kidneyksmo.org • 913.262.1551 PKD Foundation Kansas City Chapter Providing research, education, advocacy, support and awareness for the 12.5 million people around the globe 30 Parenting Children with Special Needs

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

Marfan Syndrome

National Marfan Foundation Striving to save lives and improve the quality of life for individuals and families affected by Marfan syndrome and related disorders through research, education and support services. • marfan.org • 800.8.MARFAN

Multiple Sclerosis

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

Muscular Dystrophy

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 Muscular Dystrophy Association Fighting against neuromuscular disease.

• mda.org • 913.451.3230

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

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

• tsa.usa.org 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

Rehabilitation Services for the Blind Rehabilitation Services for the Blind (RSB) provides services to people with varying degrees of visual impairment, ranging from those who cannot read regular print to those who are totally blind.

• www.dss.mo.gov/fsd/rsb/ Alphapointe Association for the Blind Provides rehabilitation, education, and employment services for the blind and visually impaired • alphapointe.org • 866.240.1352 Missouri Council of the Blind A support group that provides information and support. Information provided includes scholarships, summer camps, special services program, adaptive technology information, health benefits, employment and legislation issues and public awareness programs. • 314.832.7172 • www.missouricounciloftheblind.org

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

PCWSN.com

L O R E N J. D E C K E R , C P

PerSOnal care from Our FaMIlY to YOur FaMIlY We will treat your family with the same care we treat our own families!

Orthotic Services

Prosthetic Services

Pediatric Orthotics

Pre-surgical Counseling

Scoliosis Bracing

Post-operative Fitting

Custom Leg Braces

Upper & Lower Extremity Prosthesis

Custom Knee Braces

Partial Hand & Foot Prosthesis

Off-the-shelf Bracing & Splinting

Pediatric Prosthetics

Spinal Bracing

Myo-Electric Prosthesis

Club Foot Bracing

Bionic Knee and Foot Prosthesis

We are committed to providing patients with the highest quality orthotic and prosthetic care through Decker Intergrated Orthotics & Prosthetics. www.deckeriop.com 8931 W. 75th St. | Overland Park, KS 66204

913.341.2661

LOVE WILL STOP AT NOTHING TO KEEP HER HEART BEATING.

Ziah was born with half a heart. Thanks to an at-home heart monitoring app invented by Children’s Mercy, her parents enjoy these smiles every day.

It’s another way that love drives lifesaving innovations to give families more moments just like this. See Ziah’s story at childrensmercy.org/lovewill.