PCWSN 2021: Volume 11, Issue 2

FREE Publication • Also available online at PCWSN.com

Into the Unknown:

BLOOD DONATION. YOU CAN SAVE A LIFE!

Quinton’s Story SENSORY PROCESSING: How it Affects Learning, Behavior, and Daily Functioning

USING TECH TO IMPROVE HEALTH

FIRST AID TIPS FOR DENTAL EMERGENCIES 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.

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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.

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PUBLISHER’S

Letter

Reflections and New Heights.

I

’ve been spending a lot of time over the last few weeks thinking about what to say in my reflection of the past year’s events.

In my head, I’ve written and rewritten my thoughts a million times, only to discover that there isn’t really a good way to describe the last three-hundred-something days; instead, it’s all been a sort of cataclysmic blur - one day blending into the next, and each day equal parts challenging. For many, 2020 could be considered the most unpredictable and challenging year to date.

Yet here we are. Just as we did before, we’ve been powering through our trials and dealing with everything as it comes along.

Even with the madness 2020 brought us, we each somehow managed to come out the other side - perhaps not perfectly, but whole nonetheless - almost as if the challenge of being a caregiver 24/7 prepared us for the last year’s events.

If you’re like me, you might have pondered how being a caregiver to an individual with special needs equipped us with the tools to adapt in the pandemic - almost making it easier. Okay, perhaps not easier - but I often feel like we have to excel at facing obstacles, altering life, and finding resilience in the face of adversity. It was my life long before the pandemic, and I suspect this trajectory will continue in the future.

Before the madness of 2020, I already felt like an expert at wearing a “mask” of perfection and perseverance - working hard to make the unimaginable look easy. But I never saw myself as a huge decision maker.

I never saw myself being unemployed in 2020, or taking on the role of an at-home teacher/principal, homemaker, and nurse - yet I’ve been all of those things before or since our son was born.

Most of all, I never saw myself receding into the shadows, spending less time in the community, or taking a break from the magazine I love when the pandemic made challenges seem insurmountable. If 2020 taught me anything, it’s the profound truth that none of us hold a magic crystal ball, none of us see the future or know how we’ll react in every situation, and none of 4

Parenting Children with Special Needs

us know what each day will bring. At the beginning of March 2020, the pandemic had yet to take hold in our part of the country - and in March of 2021, I am forever changed, and I had no idea it was coming.

led us to redefining the very depths of our own strength. We reevaluated how to best serve you and how to continue forward in a post-pandemic world where so many organizations have ceased to exist. We changed and we grew.

Here’s what I do know, though - I am a faith-filled and fearless woman of God. Part of me knew that no matter what, my faith would carry me to where we are now - that it was ultimately where we were supposed to end up. The last year, although wildly unpredictable, was full of small blessings.

We spent more time with family, learned to find pleasure in even the simplest things, and, like so many of you, had moments that

As Nelson Mandela once said, “the greatest glory in living lies not in ever falling, but in rising every time we fall.” For many of us, 2020 was a great fall that seemed never-ending. But for all of us, 2021 can be a faith-filled, beautiful and glorious rise to new heights - and I’m looking forward to sharing it with you.

Until next time, Stephanie Myers

PCWSN.com

Volume 11 • Issue 2 FEATURES

Sponsored Feature

8

By Emily Goodwin MD

The Lymphatic System

26

Into the Unknown: Quinton’s Story

14 Intervention Enrollment is Down, 18 Early But Here’s 3 Steps For How Parents Can

By Chance Copeland

Help Their Own Late-Talking Kids

By Marci Melzer

Stress, PTSD and Parents

24 of Kids with Disabilities

By Liz Matheis, Ph.D.

Blood donation. You can save a life!

26 Congenital Heart Defect Awareness: 28 Izzy B’s Story

30

By Cindy Aldrige, F.N.P.

By Abbie Engelhardt, R.N.

DEPARTMENTS

12 First Aid Tips for Dental Emergencies Practical Matters

Sponsored by My Kid’s Dentist and Orthodontics

20 Sensory Processing: How it Affects

FREE Publication

Therapy

Learning, Behavior, and Daily Functioning

By Deborah Herzog, OTR/L

23 The Center for Advanced Pediatric Limb Healthy Living

Lengthening & Reconstruction at Shriners Hospitals for Children – St. Louis

Sponsored by Shriners Hospitals for Children – St. Louis

30 Using Tech to Improve Health Independent Living

By Kimberly Ladish, COTA/L, Gabby Scheuler, OTR/L, MOT, Heather Brock RN, BSN, CDDN

PCWSN.com

Into the Unknown:

On the Cover:

• Also available

online at PCWS

N.com

BLOOD DON YOU CAN SAVE ATION. A LIFE!

Quinton’s Sto

ry

The Griggs family works hard to balance the very unique needs of each of their children.

SENSORY PROCESSING:

How it Affects Behavior, and Learning, Daily Functioning

USING TECH IMPROVE HEAL TO TH

FIRST AID TIPS FOR DENTAL EMERGENCIES

IN EVERY ISSUE

Missouri’s Com prehensive Heal

th and Services

Resource Guid

e

4 Publisher’s Letter 33 Resource Guide

Reflections and New Heights.

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

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 2 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.

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Parenting Children with Special Needs

Specialty Pediatric Orthopaedic Care

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.

DID YOU KNOW? There are between 500-700 lymph nodes in the body.

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.

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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!

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Parenting Children with Special Needs

7

SPONSORED

Feature

The Lymphatic System

By Emily Goodwin MD

What is the lymphatic system?

The lymphatic system is a part of the body’s immune system designed to help fight infections. The lymphatic system also helps the body maintain fluid balance. It includes a network of channels that drain and collect fluid and proteins from all over the body. The lymph system helps return fluid to the body that leaks from vessels and tissues in the body. Organs in the lymphatic system include the spleen, bone marrow, thymus gland, tonsils, adenoids, lymph nodes and even tissue in the gut. The body has over 600 lymph nodes and are most easy to feel in the neck, armpits and groin. Contained inside of lymph nodes and tissue are special infection fighting cells called lymphocytes. Lymphocytes are a types of white blood cell 8

Parenting Children with Special Needs

that help fight infections and include T-cells and B-cells. B-cells make antibodies and T-cells help to both fight and remember infections. I like to think of the lymphatic system like a waste management system that helps both filter and recycle, but also take out the “trash” by fighting infections in the body.

Why should I care about the lymphatic system?

You may never give a second thought to the lymphatic system when you or your child is healthy. During an infection however, you may take notice or see a new lump arise. When the body faces an infection, germs collect in the lymph nodes. Lymph nodes in the neck are often swollen when fighting an infection inside the lymph node or nearby infection PCWSN.com

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Parenting Children with Special Needs

9

If your child has a swollen lymph node, don’t panic! It is most likely part of the normal response to an infection. The lymph node swelling and tenderness should disappear after the illness is gone, but may take weeks to shrink back down to normal size. in the head, neck or throat. For example, if your child has a throat infection, the lymph nodes in the neck may swell (lymphadenopathy) and are typically tender and easily moved (mobile).

Infection is the most common reason for lymph node swelling but unfortunately, lymph nodes can enlarge in other conditions including cancer. Cancers that start in the lymphatic system are typically called lymphoma. Some cancers that start in other areas can spread (metastasize) to the lymph system. Fortunately, cancer is a much less common cause for lymph node swelling, but still a serious consideration.

What if my child does not have part of the lymphatic system?

Whether born without it, surgically removed, or no longer functional related to a chronic medical condition, some children don’t have all lymphatic organs such as a spleen, or tonsils, or adenoids. The good news is that these children can still fight infections. Tonsil removal (tonsillectomy) is still a very common surgery and most children do fine without their tonsils. Children without a spleen or who have an immune system disorder may need certain medications, infusions (of antibodies for example), prophylactic antibiotics or vaccines to help prevent or limit infections. Consult with your child’s medical team if your child has immune disorder to find out ways to help prevent infection and stay healthy. Some children may also be born with dilated or malformed lymphatic channels (lymphatic malformations) that are usually identified at birth of first few years of life and treatment depends on location and is individualized. If part of the lymphatic drainage system is missing, blocked, or removed (as part of a surgery) that area in the body may tend to have swelling (lymphedema) since the lymph system helps with fluid balance. Measures such as repositioning, special garments, and sometimes medications or procedures can be used to help your child manage the fluid.

How are swollen lymph nodes treated?

Treatment for lymph node swelling depends on the cause. If the lymph node is swelling as part of fighting a viral infection, no particular treatment may be needed other than supportive care for your child for comfort and hydration during the illness. Sometimes lymph nodes are swollen as part of a bacterial infection and antibiotics are needed. Be sure to let your child’s doctor know if your child has had any signs of infection such as fever, runny nose, cough, skin changes or animal exposures including cat scratches or bites, tick bites or bug bites as these can be clues to the cause.

Not all swelling is a lymph node, so it is best that your child be examined if unsure. For example, in the head and neck, sometimes the spit (salivary) glands (like the parotid gland) can get infected or a contain pus (abscess) needing drainage. If lymph node swelling doesn’t get better as expected, further testing may be needed that may include blood work, imaging such as ultrasound or even sampling the tissue (biopsy) to determine the best next steps.

10 Parenting Children with Special Needs

If your child has a swollen lymph node, don’t panic! It is most likely part of the normal response to an infection. The lymph node swelling and tenderness should disappear after the illness is gone, but may take weeks to shrink back down to normal size. If your child is young or thin, you may even be able to feel their nodes even when your child is well. They feel small and roll beneath your fingers, like a pea.

Please consult your child’s doctor if your child has these signs or symptoms: • Lymph nodes that stay large or not decreasing in size after a week • Enlarged lymph nodes that are hard, hard to move (fixed), or not tender • Swollen lymph node just above the collar bone (supraclavicular) • Lymph node swelling with weight loss, night sweats, or fever more than 4 days • Rapidly enlarging lymph node • Skin color changes over the node or draining pus

Where can I learn more?

Check out Healthychildren.org and Kidshealth.org for more information and as always, I encourage you to ask your child’s medical team if you have any concerns about your child’s immune or lymphatic system.

Resources and References:

Friedmann, Alison. Evaluation and management of lymphadenopathy in children. Pediatrics in Review. February 2009, 29 (2) 53-60 Lymphatic Malformations. Kids Health by Nemours. Reviewed by: Craig M. Johnson, DO. https://kidshealth.org/en/parents/lymphaticmalformations.html. Accessed February 3, 2020.

Spleen and Lymphatic system. Kids Health by Nemours. Reviewed by: Larissa Hirsch, MD Date reviewed: August 2019. https://kidshealth.org/ en/parents/spleen-lymphatic.html?ref=search. Accessed February 1, 2020.

Swollen Glands. Healthychildren.org from the American Academy of Pediatrics. https://www.healthychildren.org/English/health-issues/ conditions/ear-nose-throat/Pages/Swollen-Glands.aspx. Accessed February 1, 2020.

Emily Goodwin MD, 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 Kansas University Medical Center.

She has a special interest in education for patients, families and medical trainees.

PCWSN.com

Now Open | FREE

User-centered and inclusive design

45th & Oak | nelson-atkins.org/design | Design: Nouveau shown in Charcoal + White.

Model: Emery Vanderburgh. Photo: ALLELES Design Studio

Access+Ability was organized

by Cooper Hewitt, Smithsonian Design Museum.

PRACTICAL

Matters

First Aid Tips for Dental Emergencies Sponsored by My Kid’s Dentist and Orthodontics

D

ental emergencies seem to happen during the busiest times of the year and with the holidays quickly approaching, it’s a good idea to keep your nearest Smile Generation®-trusted pediatric dentist’s number on hand. Little mouths are known to get into dental accidents, which may include broken teeth, loose appliances, cuts in the mouth and more. Here are some tips on what to do in case your child experiences a dental emergency. However, the most important thing to do is to remain calm and call your nearest My Kids’ Dentist & Orthodontics office as soon as possible.

Bleeding After A Baby Tooth Falls Out

Fold and pack a clean gauze or cloth over the bleeding area. Have your child bite on the same gauze with pressure for 15 minutes. Repeat once. If bleeding persists, take your child to see the pediatric dentist.

Knocked Out Permanent Tooth

Time is of the essence in this situation.

Find the tooth as quickly as possible, being careful not to touch the root, and try to place it back in your child’s mouth if possible. If that doesn’t work, place the tooth in milk or water and immediately visit your nearest pediatric dentist. The tooth must be reimplanted within 60 minutes.

12 Parenting Children with Special Needs

Broken Tooth

Place a cold compress over the face where the injury is present. Locate and save any broken tooth fragments and put them in milk or water to keep them moist. Contact a My Kids’ Dentist & Orthodontics office in your area for an emergency visit.

Cut or Bitten Tongue, Lip or Cheek

Apply ice to bruised areas. Apply firm but gentle pressure with a clean gauze or cloth if bleeding occurs. If the bleeding has not stopped after 15 minutes or if you cannot control the bleeding by applying pressure, take your child to a hospital emergency room.

Cold or Canker Sores

Take over-the-counter medicine for cold or canker sores as directed for relief. Avoid spicy or acidic foods and stick to bland foods like dairy. If sores persist more than occasionally, see the pediatric dentist for evaluation.

Loose Baby Tooth

If your child has a very loose baby tooth and it won’t come out from wiggling alone, front teeth often come out easily with simple rotation, whereas back teeth come out more easily with a side-to-side motion.

Lost Filling or Crown

Take your child to the nearest dentist immediately to take care of your child’s crown or filling so they aren’t in pain.

Swelling or Abscess in or around the Mouth

This typically indicates an infection. Take your child to see the pediatric dentist as soon as possible. If swelling is severe, take your child to the nearest hospital emergency room.

Toothache

Clean the area around the sore tooth as thoroughly as possible. Rinse with warm salt water or use dental floss to dislodge trapped food or debris. Do NOT place aspirin on the gum or on the aching tooth.

You can apply a cold compress to any swollen areas on the face. Take children’s ibuprofen for pain and call the pediatric dentist.

Don’t be caught off guard by a dental emergency. Find the nearest My Kids’ Dentist & Orthodontics office by visiting www. smilegeneration.com.

PCWSN.com

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Parenting Children with Special Needs 13

14 Parenting Children with Special Needs

PCWSN.com

Into the Unknown:

Quinton’s Story

By Chance Copeland Photos by Jaime Russell, Anthem Photography

I

f there is anything I’ve learned in the time that I have been telling the stories of our readers, it’s that every story begins differently - and some are more surprising than others. Quinton’s story begins on April 7th, 2010 at St. Luke’s East Hospital. Naomi Griggs, Quinton’s mom, had been in the hospital since the day before with preeclampsia.

When her water broke, she was ready to welcome her little baby into the world. He was born at 7:14 PM, weighing 8 pounds and 6 ounces.

They thought all was well, but when the umbilical cord was cut, Quinton went limp.

They immediately took him to the NICU and put him on oxygen, where he seemed to recover. Naomi eagerly anticipated holding her baby for the first time.

“We did not know he had a heart defect,” Naomi said. “It went undiagnosed for almost 24 hours.”

Naomi held and fed Quinton for the first time, and things progressed as anticipated. She fed him once more. But by the time the third feeding rolled around, nurses wanted them to wait because his breathing had increased.

When his breathing didn’t improve, they ran some tests to determine the cause.

“They called in a cardiologist because he had a heart murmur. He had hypoplastic left heart syndrome and needed to be transferred immediately,” Naomi said.

Quinton rode by ambulance to Children’s Mercy, where they learned more about his condition.

“The lower left chamber of his heart is very underdeveloped,” Naomi explained. “It is a

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third of the size it should be and will stay that way forever. To fix it, there is a series of three separate surgeries.”

Quinton had the first surgery at seven days old. To recover, he was put on ECMO. “[That] is basically life support,” Naomi said.

But Quinton was strong and had a will to recover. He went home in May, and Naomi adjusted to life as the parent of a newborn.

He had his second surgery in September and seemed to be doing well.

“He was right on track [and] they were super happy with him,” Naomi said. “His cardiologist even referred to him as his photo child.”

He met milestones, days turned into months, and before they even knew it, Quinton’s first birthday came and went.

They thought they were out of the water, until one night changed the rest of their lives: May 16th.

“I woke up early because I heard [Quinton] on the baby monitor, kind of rustling in his sleep,” Naomi said.

His dad went to get him because he was going to work, but found Quinton unresponsive in his crib.

“His eyes were bouncing around and he started vomiting,” Naomi said.

They called 911 and an ambulance took him to the hospital while Naomi followed.

When they got to the ER, Quinton began having seizures.

“He wasn’t breathing [and] he was turning purple. So we yelled to the doctor,” Naomi said.

Parenting Children with Special Needs 15

They ordered an EKG and an MRI and put Quinton on oxygen while they waited for the results. Ultimately, the MRI revealed that at some point during the night, Quinton lost oxygen to his brain, which caused his seizures.

“It caused severe brain damage, and he just continued to have seizures while he was in the hospital,” Naomi said. “May 19th was his first day without seizures. They ended up having to give him enough seizure medication for a man who was 250 pounds.”

When Quinton did wake up, things were very different. “His eyes were still wandering around [and] he couldn’t focus on anything,” Naomi said. “He had zero strength. He couldn’t hold his head up, lift his arm, [or] talk.”

The doctors told Naomi that Quinton was blind and they began physical therapy, speech therapy, and occupational therapy. He was also choking on anything they put in his mouth, so on June 16th they did surgery to input a G-tube.

“On June 19th, we came home with a child nothing like he was 30 days prior. Once we were home, being blind was ruled out, but he was diagnosed with cortical visual impairment.”

For the Griggs family, life has been different ever since, but they’ve remained focused on quality of life for Quinton. He goes to school, enjoys the outdoors, and loves to spend time with his family. Since he’s nonverbal, he communicates mostly via the use of switches, but they’ve learned to understand what he needs with an amazing degree of accuracy. At the end of the day, they just want their entire family to live a good life.

“We’re just trying to give him the most ‘normal’ that we can,” Naomi said. “We spend summers at the lake. We’ve taken him tubing. We try to keep Quinton’s life as a ten-year-old boy like what other 10-year-old boys would [have].”

Yet despite their success in parenting, Naomi and her husband have also had to face and overcome a lot of challenges in providing care for Quinton. One of such challenges has been nursing care.

“The future is unknown for everybody,” Naomi said, “But especially for [Quinton].

We don’t know what the future is going to bring for him. Our main goal is just continuing to do the most normal things for our girls as well.”

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

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Quinton’s sisters have also learned from growing up with their extraordinary brother.

“In the world we live in now with all the meanness, I have two gentle, caring little girls,” Naomi said. “They’re very accepting of anybody.”

The Griggs family story is far from over, but a lot remains uncertain and change is inevitable when caring for a child with medical complexities.

“The future is unknown for everybody,” Naomi said, “But especially for [Quinton]. We don’t know what the future is going to bring for him. Our main goal is just continuing to do the most normal things for our girls as well.”

“We had a nurse from 2012 to 2019, and we lost her after 6 years because she found a better opportunity,” Naomi said. “If it wasn’t me [caring for Quinton], it was Ms. Lisa. They had a very close bond.”

Then, there are the financial challenges. Naomi works as a hairstylist, teaches fitness classes, and sells cosmetics. They have a gutter company and Naomi’s husband also lays water main. In total, they have five jobs but one vision: a good life for themselves and their three children.

“You know, we’re trying,” Naomi said. “[These challenges] have brought a lot of fear. But [they have] also made [us] stronger, mentally and physically.”

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So, how do they achieve that equilibrium? How do they navigate uncertainty and juggle the needs of all of their children simultaneously? This is something Naomi has spent a lot of time thinking about and talking over with her husband.

“Balance. Balancing a healthy relationship, balancing all three kids and managing three [sets of] needs,” Naomi said. “As the girls get older, they’re going to want to be involved in sports and dance…so making sure they get to do what they want to do and still providing everywhere else [is a priority].”

With that in mind, the uncertainty becomes a bit more bearable, allowing the Griggs family to be certain of one thing: they’ll travel into the unknown together - no matter what lies in store.

Parenting Children with Special Needs 17

Early Intervention Enrollment is Down, But Here’s 3 Steps For How Parents Can Help Their Own Late-Talking Kids

By Marci Melzer Marci@WavesofCommunication.com WavesofCommunication.com

E

arly intervention is a federal program that provides support to children under age 3 who show signs of delays in cognitive development, physical development, communication development, social or emotional development, or adaptive development. The program also covers children who have a diagnosed physical or mental condition that is likely to cause delays.

It’s a program that was designed to help kids overcome delays early in life, to lower the need for special education services in school.

Normally the referral process would involve families, daycare centers, and doctors to work together to identify potential delays, followed by multidisciplinary developmental evaluation organized by the Early Intervention agency. Enter COVID, and while the data hasn’t all been collected, there are signs that professional participation has declined significantly. In New York City, Early intervention referrals fell 82% in March last year, and they haven’t fully rebounded. It’s a concern, because parents who suspect their children have delays often feel very worried and do need support.

The shutdowns and closures due to the pandemic are highlighting a truth that is worth exploring. The systemic early intervention services offered may not fit every family. In 30-years of therapy practice I’ve noticed that when parents are concerned by their child’s delay, they want to understand why it has happened and

18 Parenting Children with Special Needs

what they can do to fix it. Under the federal program, the children are given scores and a diagnosis, and the parents are given a report that highlights troublesome behaviors and delays followed by a long list of therapy appointments. Often the process causes more questions than answers.

Here’s an Easy Process That’s Helping Parents Find Speech Without Early Intervention: Skip the diagnosis and find your child’s listening blockages

Listening is key to learning. Sometimes, physical, environmental, and even emotional/mindset blocks cause childrens’ minds to wander instead of listening to parents and others who are trying to teach them. This can create communication and learning breakdown which stalls or stops development and results in frustration for both the parent and the child.

Parents of kids who are late talking must look at the situation from the child’s perspective to understand the habits, patterns, and environments that are blocking your child’s motivation to listen to you. For example, a child who spends a lot of time listening to repetitive music and high-energy visuals on technology, may become habitually more “satisfied” by looking at the device than they are when trying to focus their attention on listening to their parents. This child will likely be a late talker.

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Put in more language than you try to pull out When parents realize their kids are late talking, they often go overboard pressuring their kids to say words. Exchange-based tactics such as withholding objects or food until the child does a sign or says a word works for therapists to pull words out and get kids talking. However, parents should know that this sort of training does not help kids learn how to listen. Instead, it trains “listening for reward” and over time kids just learn the minimum they must do to get the object of their desire. As soon as they do, the child will then immediately shift their attention back to their own ideas. This blocks progress!

Kids are a lot more likely to be motivated to listen when parents put aside expectations for performance and take the time to completely understand their feelings and ideas. Real listening happens in the “language facilitation zone”. This is the moment when the parent and child are thinking and focused on the same idea at the same time. Parents know kids are listening when they stay near, look at the object of focus, and smile, sometimes with fleeting true eye-contact.

Neuroscience research shows that when kids are listening to their parents talking, their neurological language learning systems light up.

Problem-solve with your child instead of professionals.

All children start training their parents to understand nonverbal communication as they communicate their wants and needs from birth. Kids can only learn to turn those behaviors into functional speech, after they hear parents demonstrate how to use the words

they know functionally. Talk about your child’s feelings when you see big behaviors and use slow, calm speech to empathize with their drama. Share your opinions and feelings with your child, even if they aren’t talking yet. When your child is happy, calm, and listening, they will learn quickly from your speech models.

The kids who start talking early have been exposed to a lot of functional speech models about their interests during exploration and play before they are trained to memorize words or practice academics. Kids who are assisted through their struggles will be more attentive and happier. Listening to peers and adults express their opinions and excitement about life will spontaneously prompt any child to want to try harder to share their own wisdom with the world. Language facilitation is easy and super-effective “early intervention” for late talkers and the easy strategies are available right now to every parent around the world.

Marci Melzer, M.Ed./SLP is an Intuitive SpeechLanguage Pathologist Consultant who has been helping people develop the ability to use spoken language functionally for three decades. As a speech therapist, Marci found the health care system to be increasingly disempowering for both herself and her clients. She has now established herself as an online global influencer and resource, helping parents teach their children to talk themselves through her Waves of Communication platform. Marci is the author of If It Isn’t Fun, It Isn’t Fun: Teach Your Child to Talk Faster than Speech Therapy. Visit her website or connect with her on Facebook @wavesofcommuncation.

DSP/CNA positions available immediately at our Independence, KC and Lee’s Summit day programs. Work in a positive enviroment with adults having developmental disabilities.

All staff support program participants with personal care needs, lunch, ROM, sensory needs, etc. Must have a valid driver’s license and High School Diploma or equivalent.

These are full-time day shift positions working Monday - Friday. Apply online at Indeed.com and searching “Developing Potential”.

CONTACT 816.525.6000 or JOBS@DEVELOPINGPOTENTIAL.ORG

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Parenting Children with Special Needs 19

Therapy

By Deborah Herzog, OTR/L, Edited by Mallory Fellows

Sight

Hearing

Smell

Taste

Touch

Vestibular

Proprioception

Interception

Sensory Processing

How it Affects Learning, Behavior, and Daily Functioning Gain a better understanding through a sensory perspective

B

ehaviors and academic learning are the “visible expressions of the invisible activity” within our nervous systems (A. Jean Ayres), 1979) “Learning and behavior are the visible aspects of sensory integration” (A. Jean Ayers, 1979)

Our Nervous System and Brain

What does our brain have to do with our sensory systems? The brain is connected to and a part of our sensory processing systems. The brain is part of our nervous system and is set up with lower and higher brain centers. These brain centers are equally important for 20 Parenting Children with Special Needs

receiving incoming information from our senses so that we can respond or react appropriately. The lower brain center is mainly comprised of the brain stem and cerebellum. The higher brain centers include the two cerebral hemispheres and cerebral cortex. The nerves throughout our bodies and spinal cord are also part of our nervous systems. All parts of the nervous system work as team so that we can do all the things we do throughout life. The important piece to remember is that the sensory information needs to pass through the lower brain centers so that the higher brain centers can make meaning of it.

Our 8 Sensory Systems

Most of us have heard we have seven senses. Well there’s actually eight that are recognized. The 8 senses are: • Sight • Smell • Taste • Hearing • Touch • Vestibular • Proprioception • Interoception PCWSN.com

It’s easier to understand the first five senses of sight, smell, taste, hearing, and touch. The other three need a little explaining.

Remember that the brain and sensory systems work together? The sensory information that comes into our bodies from all our senses travels along the nerves, enters the spinal cord, then goes through the lower brain center, and finally reaches the higher brain centers.

When the lower brain center has difficulty interpreting the sensory information or misperceives it as not safe, then the information doesn’t all get to the higher brain centers. For example, your child that has perfect hearing and vision, doesn’t seem to hear his/her name or has difficulty deciphering the teacher’s directions. When this happens, your child sits in his desk for forty-five to sixty minutes without starting the assignment while the other children finish. You know that your child has perfect hearing and sight; yet when the information traveled up the spinal cord to the lower brain centers, the lower brain centers couldn’t make sense out of it. So bits and pieces of the information arrive at the higher brain centers.

When this happens your child doesn’t know what to do.

Imagine this is what your child’s ears heard: “First step and turn in when completed”. At that point, your child has that dear in the headlights look and has difficulty processing that they need to go ask the teacher to give the directions again. This is one example of our hearing and vision sensory system not being well developed.

Oh, and in case you’re wondering why doesn’t my child ask the teacher for help? After all, the teacher says to ask for help when needed. When the sensory system is not well developed, this affects the child’s executive functioning and ability to determine that he/ she needs to ask for help. For example, the child needs to process: 1.) “I didn’t understand the directions,” 2.) “What do I need to do about that?” and 3.) “I need to ask the teacher for help.” Instead, 40-50 minutes go by, and your child hasn’t set pencil to the paper.

One strategy is for the teacher to routinely check in with your child to make sure the directions were understood.

The other side of this when your child takes in every sound in the room and has difficulty filtering out all of the extra sounds to hear the teacher’s directions. These are the extra sounds that most people can block out. The sounds could be the wall clock ticking, sounds of bright lights, footsteps, teacher’s voice, kids making small noises, or noises from the hallway. When this happens, there’s too much information all at once for the brain to interpret, especially with a disorganized sensory system.

Vestibular Sense

Our vestibular sense has to do with our body movements. It tells us where our body is in relation to gravity, if we are moving or still, if we are going fast or slow, and the direction we are moving in.

Vestibular movement helps us with our posture and balance, and the sense receptors are located in our inner ears. Our vestibular senses start to develop while in the womb and are stimulated by the mother’s movements. Here’s an example of when a child’s vestibular system is not working well. Even though your child has good enough vision to see what’s in their surroundings, they may frequently bump into walls, others, or fall out of chairs. It’s not because they’re clumsy. The reason is that their vestibular senses are not providing the correct information to adequately know where their body is in relation to gravity, in which direction they are moving, or the speed of movement.

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Proprioception Sense

Our proprioception senses are located in our muscles and coverings of our bones to help us move. When proprioception is not well developed in a child, they move slower and with more effort and less coordination. Children with poorly developed proprioception senses don’t get enough information from their hands to hold and manipulate items such as a crayon or pencil for writing, manage buttons or zippers on clothes, sense the keys on the computer for typing, or move the body during sports and running. Your child might compensate for the underdeveloped proprioception sense by using their eyes to locate the keys on the keyboard. So when your child has difficulty with typing and writing, it might be because their muscles are not sending the correct information to the lower brain center or it’s misperceived.

Therefore, the higher brain center will have difficulty with motor memory for where the keys are on the keyboard. This is when your child uses the hunt and peck method.

Interoception sense

Interoception is also referred to as visceral or somatic sense.

This sense is located in our internal organs, blood vessels, bones, muscles, and other tissues. It has to do with how we feel inside our body. Interoception helps to regulate breathing, digestion, hunger, blood pressure, or even when you need to use the restroom. When the interoception sense is developed, your child has better selfawareness, self-regulation, problem solving, intuition, mental flexibility, and social skill awareness. When interception is not well developed, this contributes to increased anxiety, undesired behaviors, and difficulty attending and learning.

Learning and Behavior

Our sensory systems work together and act independent of each other. The lower brain center needs to do its job so that the higher brain centers can correctly take in the information, organize it, make a plan, and carry out the task. The higher brain centers specialize and work together for optimal learning and behaviors.

Learning and behavior difficulties are more pronounced in children with inefficient working sensory integration within the lower brain centers. Imagine yourself in a room, and you’re the only one speaking English. You need to complete directions given in a different language that you know bits and pieces of. Everyone else in the room has about completed the assignment, and you’re having difficulty understanding the language before you can process what to do. Your sensory system and brain are trying to make sense of it all; yet, you feel your stress increasing, and you just want to escape out of the situation. What you just felt is what your child probably feels like when their sensory system isn’t developed and appears to avoid a given task. The information filters into the higher brain centers in an unorganized fashion and becomes more disorganized. So you can see what happens with learning when your child’s sensory processing is challenged.

Fight, Flight, or Freeze Parasympathetic Responses When the incoming sensory information is not detected well at the lower brain center area, a fight, flight, or freeze response can be set off. So does this mean that some sensory information coming into to your child’s system can be misinterpreted as a threat? Sure does. This then further affects the information that gets to the higher brain centers. Fight, flight, or freeze responses take blood

Parenting Children with Special Needs 21

and focus away from our brain so that it can go to our muscles to prepare us for running from danger. When your child overly seeks vestibular movement or demonstrates avoidance behaviors to complete schoolwork, homework, and transitions, an internal fight or flight may be going on. Hence the yelling, kicking, hard hugs, knocking things over happens when your child is trying to escape what doesn’t make sense to them. The freeze response works along the same lines. After given directions to complete a task, your child may appear as though they don’t know what to do and so does nothing to initiate the task.

Kandel, Eric R., Schwartz, James H., Jessell, Thomas M. (2012). Principles of Neural Science, Fifth Edition. New York: Elsevier Science Publishing Co., Inc.

Occupational Therapy and Sensory Processing for Optimal Learning and Behaviors

Miller, Lucy J., Fuller, Doris A. (2014). Sensational Kids: Hope and Help for Children with Sensory Processing Disorder (SPD). New York: Perigee Book.

Can an occupational therapist enhance your child’s sensory processing? Yes. Will this enhance and increase the effectiveness of how your child’s lower brain center and higher brain centers work for optimal and desired behaviors, activities of daily living, and new learning? Absolutely, there is good research on the brain’s plasticity and building new brain connections. Remember that your child’s sensory processing is connected to his/her nervous system.

References

Ayres, A. Jean (2005). Sensory Integration and the Child: Understanding Hidden Sensory Challenges. Los Angeles Western Psychological Services.

Dalgliesh, Carolyn (2013). The Sensory Child Gets Organized. New York: Touchstone.

Koomar, Jane; Kranowitz, Carol Stock; Szklut, Stacey; and others (1999).

Answers to Questions Teachers Ask About Sensory Integrati.

Kranowitz, Carol Stock (2005). The Out-of Sync Child: Recognizing and Coping with Sensory Processing Disorder. New York: Perigee Book.

Mahler, Kelly J. (2015). Interoception: The Eighth Sensory System. Lenexa: AAPC Publishing.

Deborah Herzog is an Occupational Therapist and the founder of St. Nicholas Children’s Therapies in Roeland Park, Kansas. While she treats a wide range of areas and disorders, her specialties are learning disabilities, ASD, ADHD, dyslexia, social skills, visual perceptual with the eyes working together for learning and reading, sensory processing, primitive reflexes, and development of the client’s sensory system for increasing abilities to take in and process new information Deborah is an adjunct faculty at Cleveland University and a presenter at area groups. Website: www.snctkc.com , email: Deborah@SNCTkc.com

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Living

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

T

he 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.

Our mission

We have a mission to provide specialized pediatric orthopaedic evaluation, diagnosis and surgical intervention with a

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collaborative team-centered approach in conjunction with advanced nursing care and therapy services. Our goal is to improve the function, mobility and independence of children in accordance with evidence-based practice, while advancing research in the science of limb reconstruction. This care is provided in a compassionate, patient and family-centered environment, regardless of the families’ ability to pay.

Conditions treated

The Center for Advanced Pediatric Limb Reconstruction and Lengthening at Shriners Hospitals for Children — St. Louis provides the best in pediatric orthopaedic evaluation, diagnosis and surgical intervention for children with

limb differences and deformities. Through the collaboration of our staff, including advanced nursing care and rehabilitation services, our goal is to improve the function, mobility and independence of each child.

Some common conditions treated include: • Knock knees • Bowed legs • Blount’s Disease • Limb length discrepancies (one limb shorter or longer than the other) If you know a child we could help, call us today at 314-692-6443.

Parenting Children with Special Needs 23

Stress, PTSD and Parents of Kids with Disabilities Originally Published in The Mighty, June 2019

By Liz Matheis, Ph.D., Special Needs Mom, Clinical and School Psychologist

A

s a Psychologist, I am in the business of receiving phone calls from parents worried about their kids with disabilities. During that initial phone call, parents give me a quick run-down of their child’s symptoms, the struggles the family at large is facing, and the specific goals they would like to work towards.

During that initial phone call, I’m often left thinking, “How are you, as the parent, doing?”

Parents are often surprised when I ask that question during the intake. Several parents have responded with silence, a confused, “Fine,” or “No one has ever asked me how I’m doing.” As a parent of a child with disabilities, the process of gaining a diagnosis and then figuring out life and supports and medical conditions can be overwhelming and often traumatizing. In my experience, many parents of children with disabilities and other medical needs are experiencing symptoms of post-traumatic stress disorder (PTSD).

24 Parenting Children with Special Needs

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How Does a Parent Develop PTSD?

For the parent, the initial trauma can come from realizing that “something isn’t right” with their child, researching, and ultimately gaining the diagnosis. This trauma is perpetuated when a parent begins to mourn and grieve the loss of the child they thought they would have. The next phase is accessing medical supports or services and not being entirely sure how it will work and what the outcome will be. Then, adolescence hits and some children with disabilities develop anxiety or depression.

sleeping, poor focus, and being easily startled. You may also feel irritable and worry about your safety and the safety of your child/ children. Your spouse or other children may even perceive you as being easily frustrated or sounding angry often, but the truth is, you are spent.

These symptoms may result in difficulties in your daily functioning, such as: • Difficulty falling asleep.

For example, for some parents of children with autism spectrum disorder, their children may become aggressive. Some kids have been aggressive all along. As a result, parents are often concerned about safety, often hiding bruises or staying at home to protect their child so that others don’t witness the physical aggression. This becomes even more complicated when there are other children in the home and parents struggle to give them attention, nurturance and time, something they often can’t do successfully because taking care of their sibling can sometimes be a 24-hour, 7 days per week job.

• Difficulty staying asleep.

Raising a child with disabilities can also take a toll on a marriage.

Parents care for their kids leaving little time for themselves as a couple. Finding someone else to care for the child can be difficult.

That caretaker or babysitter needs to be trained and OK with possible meltdowns, behaviors or medical needs. And the icing on the cake is that some families become one income households so that one parent can take care of the multiple needs and therapies for the child, meaning that money can be tight, which is another source of distress for parents. Sometimes the marriage doesn’t survive due to the stress and lack of supports.

• Not being able to enjoy social or leisure events as much as you used to.

Parents are also left anticipating what might trigger their child and are constantly accommodating and modifying the environment to help their child stay calm or regulated. For some children, as they become older and their needs become more complex, some parents have to make a tough decisions about whether or not to find a residential program. Throughout this process that takes place over years and years, parents can become burned out, distressed, anxious, depressed and sometimes even feel hopeless and helpless.

What Are the Signs?

PTSD is an anxiety-based disorder that occurs when a person has experienced trauma, witnessed trauma, has been exposed to the details of a traumatic event experienced by another person, or by repeated exposure to trauma.

For parents of children with disabilities, they may be are reexperiencing traumatic events, sometimes through vivid recall of memories, maybe not every day, but several times per week. That re-experiencing can be sudden and without an obvious trigger. It can be due to an odor, a word or a color with which you have developed an association. The re-experiencing comes with intense emotions, such as guilt, fear or even anger. And because the re-experiencing can be so overwhelming, you may find that, as a parent, you try to avoid certain places, people, clothes, odors so that you just don’t go there.

You may also find yourself feeling hypervigilant or functioning at a high level of anxiety and arousal, which can result in difficulty PCWSN.com

• Feeling tired but wired all day long.

• Having a low frustration tolerance.

• Feeling tearful or angry or both often.

• Having a low appetite.

• Eating to self soothe.

• Isolating yourself from others.

• Feeling alone and not understood by other parents.

• How to Get Help for PTSD For families that are eligible, finding community and state-based resources such as Division of Developmental Disabilities (DDD) can offer respite care. That is, for a few hours per month, a DDD representative will take care of the child so that parents can have a break. (To find the DDD in your state, do an internet search with the terms “division of developmental disabilities” and the name of your state.)

For parents who feel distressed, seek help. Consult with a psychologist to help you process your emotions and your experience, and offer you support throughout your journey. If feelings of nervousness or sadness become overwhelming, it is OK to consult with a psychiatrist for anti-anxiety or anti-depressant medication. It is OK for parents to seek help for themselves instead of maintaining a 100 percent focus on their child.

If your child’s school offers parent support groups, participate in them. Talk to the other parents who are also experiencing the same types of stressors and emotions. Find solace in each other. Have play dates with each other. Offer respite to each other.

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!

Parenting Children with Special Needs 25

Blood donation.

You can save a life!

By Cindy Aldrige, F.N.P., Provider for Lee’s Summit Physicians Group.

D

onating blood is something that my family has always done and felt was important. I grew up with my parents working in EMS and helping out in the school health room. I’ve been around healthcare literally my entire life.

As soon as I was old enough to donate blood, I knew it was something that I wanted to do REGULARLY. I hate needles, but one little stick is all I have to endure to literally help save a patient’s life. I decided that was the least I can do to help my community. I pray that someone would donate for me if I needed it at some point, therefore I should help others.

Let me introduce you to my mother, Carol.

Carol is a patient here at LSPG, and with her permission, I would like to brag on her. She has donated 12 gallons of blood over her lifetime and is currently working on #13. That means she has donated blood at least 96 times! She has gone to every traveling community blood bank collection that has ever come to our hometown and now regularly goes to a donation center to give as often as they allow her to.

When I asked her how she got started donating blood, she said, “The first time I gave blood was at Western Electric where I was working. I was around 20. Then I was a health room volunteer at school and we helped on the blood drives here in town.

26 Parenting Children with Special Needs

This is what started me giving a semiregular basis.”

Then I asked her why she donates and she said, “I knew there was a need and I wanted to help. It doesn’t bother me at all to give, and I get to help someone else. I’ve also given double reds and plasma a few times.”

Donating blood is voluntary and it helps people in local hospitals and trauma facilities.

You can donate blood every 8 weeks. You must be 17 (or 16 with parent consent) and weigh at least 110 lbs. You must be feeling well. Make sure you drink plenty/extra noncaffeinated drinks 24 hours prior to donation or at least the morning before donation. And bring your photo ID with you.

The process of donating blood is pretty simple. You can walk in or schedule an apt.

They ask you a series of personal health questions and ask about any foreign travel, then do a quick vital sign assessment and prick your finger to make sure you are eligible to donate. After that, you lay back and relax on a bed while they prep your arm then collect the blood. Afterward you get a snack! (that’s my favorite part – Nutter Butters!)

They run tests on every pint of blood that is donated and notify you if they detect a concern like hepatitis or HIV. Sometimes they run promotions that they do free cholesterol screens on your blood as well, so you get a benefit of not having to pay for

that at the doctor’s office on your annual physical. Sometimes organizations like the Royals give free tickets or discounts for donating blood as a thank you for supporting our community.

I can’t think of a better gift than the gift of life. Please consider donating to help others and potentially someone you love!

For more information, check out your community blood center or the American Red Cross.

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Find out why Every year-shortly after delivery, thousands of children are admitted to Neonatal Intensive Care Units. Often doctors or hospitals are too busy to review the records and tell you why this happened to your baby. We can help you obtain the records and find the answers.

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Parenting Children with Special Needs 27

Congenital Heart Defect Awareness: Izzy B’s Story

By Abbie Engelhardt, R.N. for Lee’s Summit Physicians Group

T

his is a personal story about my niece and congenital heart defect awareness. I wanted to share this story to raise awareness… congenital heart defects week is February 7- 14.

My sister, Lori and I were both going to blessed with baby girls around the same time, how exciting!

Everything seemed to be fine.

My beautiful niece, Isabella Rose (aka Izzy B), came early at only 33 weeks, born on September 17, 2009. She weighed 3 lbs 6 oz. I visited her in the NICU before leaving for a cruise and she was doing well.

Upon returning to American soil a few days later, I had heartbreaking messages from my family. Isabella was diagnosed with a congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS).

She now had 3 options.

1. Comfort care.

2. A series of three heart surgeries to correct the defect.

3. A heart transplant.

This was devastating news. She was only 13 days old when it was discovered.

At that time, there was no cardiac screening for newborns.

Luckily, she was premature and being monitored in the NICU or she would’ve died before they found out she had HLHS. Beginning January 1, 2014, Chloe’s law came into effect, which required all babies in Missouri to have mandatory screening for critical congenital heart disease (CCHD). CCHD screening is a simple bedside test to determine the amount of oxygen in a baby’s blood. Low oxygen levels can be a sign of CCHD. The test is done using a machine called a pulse oximeter. It’s painless and takes just a few minutes.

Isabella’s parents chose the surgical route.

Since she was so tiny, she spent three months in the NICU at Children’s Mercy with a feeding tube to help her gain weight. She needed to gain weight before she could have her first surgery.

She had to be 7 lbs before they could do the Hybrid Norwood 28 Parenting Children with Special Needs

procedure. Surgery was done on December 9th, 2009 and everything went well. We spent the day in the Ronald McDonald room, which is a huge blessing for families. She spent about two weeks on the vent while her body rested and recovered, she came off it on Christmas Eve. There were setbacks, but she finally made it home for the first time in January 2010, just days after I had my baby girl, Addilynn. The girls met and bonded (as much as infants bond.)

Isabella’s family tried to have some normalcy, which was hard with numerous appointments (at Lee’s Summit Physicians Group and Children’s Mercy), home health, feeding tubes, medications, etc.

She was a fighter, and continued to grow and make an impact on those around her.

She was able to go on vacations, go to the zoo, try ice cream for the first time (her dad snuck it to her) and get some snuggles. She was PCWSN.com

spunky. I’ll never forget the sound of her cry. We enjoyed watching the girls play together (they loved their Johnny Jumpers), along with their cousin, Blake, who was glad he was no longer the only grandchild.

Another Surgery

Time went by and the second surgery was booked for July 6, 2010. It was scary leading up to surgery as you never know what the outcome will be. We soaked up every moment we could with her. This surgery is called the Hybrid Glenn and is an open heart surgery. We again spent the day in the Ronald McDonald room waiting for updates.

Isabella made it through surgery but had some rough moments.

After surgery, she wasn’t tolerating movement, her oxygen was lower than they wanted, and her heart rhythm was more irregular.

Over the next few days, while her chest remained open, they made more adjustments. She was so swollen. On July 15, 2010 I got a call that she was crashing. The rest was a blur.

We all headed to the hospital. When we arrived, they said she was stable on ECMO (life support). Their plan was to keep her on ECMO for a few days to let her body rest. While she was lying there struggling, my daughter was winning a baby contest at the Cass County fair. It was so hard to be happy for my daughter and glad that she was healthy while Isabella wasn’t. They were supposed to be healthy and grow up together.

More Information on HLHS

HLHS is a birth defect that affects normal blood flow through the heart. As a baby develops during pregnancy, the left side of the heart does not form correctly. It affects a number of structures on the left side of the heart that do not fully develop.

On July 19, 2010 they began to wean Isabella from ECMO. They were able to get her completely off ECMO on July 21st at 9:47 a.m. They said she was doing well. Later that evening, my sister and her husband went to the cafeteria for a brief time. When they came back to the PICU, they were coding Isabella. Her sweet little body couldn’t take it anymore. She earned her angel wings on July 21, 2010.

We all held her and cried. It was too soon. She was only 10 months old, but her story doesn’t stop there. She touched so many lives in her short time on earth. She will always be remembered, and I’m so thankful that more people are becoming aware of Congenital Heart Defects. There has been more than a 33% decline in infant deaths from states mandating screening. And as of 2018, all US states have policies supporting newborn screening for CCHD.

Fly high Izzy B! You will always be loved and missed.

Resources:

For example:

https://www.cdc.gov/ncbddd/heartdefects/hlhs.html

• The left ventricle is underdeveloped and too small.

https://health.mo.gov/living/families/genetics/birthdefects/cchd.php

• The mitral valve and/or aortic valve is not formed or is very small.

• The ascending portion of the aorta is underdeveloped or is too small.

The CDC estimates that each year 1,025 babies in the United States are born with HLHS. In other words, 1 in every 3,841 babies born in the US annually is born with HLHS. Hypoplastic left heart syndrome, along with other CHDs, are a hidden condition and most kids look completely healthy.

As I mentioned previously, cardiac screening is simple and inexpensive. If the results are negative, the baby’s test results didn’t show signs of CHD. This type of screening doesn’t detect all CHDs, so it’s possible to still have a CHD with a negative screening result.

If the results are positive (fail or out of range), it means that the baby’s test results showed low levels of oxygen in the blood, which can be a sign of CHD. This doesn’t always mean that the baby has a CHD, it just means that more testing is needed.

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https://www.cdc.gov/ncbddd/heartdefects/features/newborn-screeningpolicies-for-cchds.html

Pulse oximetry screening is most likely to detect seven specific CHDs. These include: • Hypoplastic left heart syndrome • Pulmonary atresia • Tetralogy of fallot • Total anomalous pulmonary venous return • Transposition of the great arteries • Tricuspid atresia • Truncus arteriosus

Parenting Children with Special Needs 29

INDEPENDENT

Living

Using Tech to Improve Health

By Kimberly Ladish, COTA/L, Gabby Scheuler, OTR/L, MOT, Heather Brock RN, BSN, CDDN

T

echnology is a part of everyday life, integrated in nearly everything we do. While there are many legitimate concerns related to the negative impact of overuse and exposure, technology can also support healthy lifestyles including social, emotional and physical health.

There are many accessible and financially viable options. At Developing Potential, our team is consistently exploring creative ways to support healthy lifestyle and create interactive, personalized and motivating options for individuals to take ownership and pride in their health journey. The following information is gathered by our Registered Nurse and Occupational Therapy team to demonstrate some of the unique and newer ways technology can be implemented to support healthy lifestyles.

30 Parenting Children with Special Needs

Nurse perspective:

Telemedicine is the remote, or offsite, delivery of healthcare related services such as health assessments, consultations, and urgent care needs. Telemedicine allows healthcare providers to evaluate, diagnose, and treat patients using everyday technology: video conferencing and smartphones. That being said, telemedicine is not a substitute for in-person treatment or emergency medical care.

Remote patient monitoring allows patients with chronic conditions to be monitored in their homes with mobile medical devices that collect data about blood sugar levels, blood pressure, or other vital signs. Remote caregivers can review the data instantly and are able to make adjustments to care.

Electronic Health Records, lets providers share patient information, such as lab results, with other physicians at another location. This helps to streamline care and also allows for the healthcare team to collaborate with other professionals worldwide to ensure that the best course of action is being taken.

Interactive telemedicine, allows physicians and patients to communicate in real time.

These sessions can be conducted at home or in a nearby facility using the telephone or the use of video conferencing software that complies with HIPAA regulations. Utilizing this type of services allows patients to access specialties that may not be available in their communities.

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Occupational Therapy Perspective:

From an Occupational therapist’s perspective “overall health” includes, social, emotional, spiritual, and physical health.

This is greatly impacted by a person’s ability to interact with, access, and engage with their environments and communities.

Creating this ability is something that technology can aid in doing.

Some very interactive and more commonly available technology is in the form of smart home devices that can be very helpful for families. Some of the benefits include allowing alone time for a child with the use of monitors, encouraging social interaction with devices that will tell a joke or respond to a question and by playing music. These devices also have environmental control options that allow for individuals to turn on lights or adjust temperature of the home.

Health tracking apps can be integrated with social media to encourage greater participation and accountability in a motivational way. Step and heart-rate tracking technology synchronized with smart-phones enable a person to connect with a wide range of other people on health

related topics including diet, exercise, motivational quotes and goal-setting.

The great range of options can be overwhelming. In Missouri, we are fortunate to have Missouri Assistive Technology (MoAT) as a resource, specializing in all things Assistive Technology related. This organization has a wide variety of resources available to the public to both access technology and learn ways to use it as well as possible financing options.

The following information was provided directly from MoAT and highlights a few of the programs they have to offer!

•T AP (Telecommunications Access Program) and iCanConnect programs are all distance communication programs available, with some qualifications, to Missourians with a need.

• Demonstration centers around the state (11 of them) as well as the Recycle & Reuse centers (9 of them) are available to everyone. These resources offer education on use of equipment and gently used durable medical equipment/ AT for purchase to the public. This is also the best way for individuals and

families to access inventory of local items as well as gain access to an entire lending library of equipment.

• The Show Me Loans, KAT and ATR funding are great resources for parents. Show Me Loans are low interest options to fund AT needs. The KAT program is for qualifying children. The ATR funding is specifically for schools, but parents can inform schools who do not yet use this resource. For these programs families would want to contact MoAT directly.

• And lastly, Power Up, our statewide assistive technology conference, is coming up on March 30 and 31. It will be held in Columbia, MO and registration is now open and available on MoAT website.

More information on all of the above can be found at: https://at.mo.gov/services.html As technology continues to expand and more opportunities are created, there are more and more options for individuals having special needs to explore. Knowing the right resources and using the right technology for you can positively impact health and connection to the community.

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

Locally owned and here for you!

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

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

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

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

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

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

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

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

Thank you to the great team at Cherub!”

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

32 Parenting Children with Special Needs

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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

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Arthrogryposis/Arthrogryposis Multiplex Congenita

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

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”

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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 33

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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, 34 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

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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

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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 35

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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/ 36 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

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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

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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 37

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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 38 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

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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.