Through our experiences, we've learned a lot! We've found valuable people, organizations and resources that helped us get through the hard stuff. We've also created things ourselves through trial and error.
Scroll this section for all sorts of things that may help you on your own journey!
These are all organizations, companies, and/or products that promote disability awareness and inclusion we have found helpful in our own journey. Click each icon to check them out!
IMPORTANT TO NOTE: We are not paid partners with any business or entity. We share these only in hopes they provide connection and support! We are all about sharing and supporting missions and messages that promote kindness and inclusion!
This company sells inclusive books and t-shirts that go towards funding the creation of inclusive playgrounds. The books and shirts promote messages about the importance of inclusion.
The mission of this company creates books with important messages about diversity and inclusion.
They are a non profit book series, who writes stories based on real families and the child’s condition .They are registered as a charity. All profits get put back into the production of making more books, donating books to hospital settings and charities and providing equipment and sensory room projects to schools via the abilities project. The books are written by Gemma Keir.
These books share the story of children who grow up using a feeding tube. They educate and explain tube feeding as a super power!
Rolling Into Kindergarten is an uplifting story of a little girl with Cerebral Palsy who is excited and ready for kindergarten. When Isabella encounters challenges at school, she returns home feeling disappointed. Luckily, she never gives up!
Find out how Isabella and her classmates learn to create kindness, acceptance, and inclusion together.
This book introduces five children that have medical complexities. As you get to know the characters, you learn it's ok to ask questions! It is a powerful depiction of how we all can be friends, despite our differences in abilities.
These books aim to help parents, caregivers, and families explain autism, cerebral palsy, and down syndrome in a way that kids can understand. They explain the importance of inclusion and advocacy. Search the web for places to purchase! It's sold on various sites.
A disability-inclusive book series written by mother Victoria, in honor of her daughter, Moriah. Moriah was born with a rare syndrome, CHARGE syndrome, that resulted in medical complexities. She passed away at age 7. Victoria wrote this book so children like her daughter are represented, creating a more inclusive and accepting world.
A book about a fierce little girl with cerebral palsy who doesn’t let anything stand in her way. Maya and her dog, Abby, go on fantastic adventures, seeing new sights, and learning new skills. Sometimes, Maya faces big challenges and feels very stuck. Luckily, she knows just how mighty she is. “See it,then be it,” she reminds herself, and she soon finds that there’s almost nothing she can’t do!
A children's book about adaptive equipment and inclusion. Equipment included in this story are; wheelchairs, glasses, AAC, standers, feeding tubes, trachs, gait trainers, service dogs, hearing aids, orthoses, and face masks! Authored by Shelby McCarthy, Let’s Go Play sets out to create something that could go to school with her daughter Kennedy, who uses many of these “tools” herself.
This inclusive and empowering picture book from Sofia Sanchezan 11-year-old model and actress with Down syndrome reminds readers how important it is to embrace your differences, be confident, and be proud of who you are. Imagine all of the wonderful things you can do if you don't let anyone stop you! You are enough just how you are.
Sofia is unique, but her message is universal: We all belong. So each spread features beautiful, full-color illustrations of a full cast of kid characters with all kinds of backgrounds, experiences, and abilities.
If you are Christian, this one is for you. This book shows that each person is wonderfully made my God. Included in this book are: communication devices, feeding tubes, wheelchairs, hearing devices, cerebral palsy, wheelchairs, autism, chromosomal disorders, vision impairments, and more!
This company was founded by mother, Michelle, who has a son with a disability, Eli. She began this company to spread awareness about disability as a means to supplement her income while she managed his care. It began in 2015 and continues to be a force in supporting the disability community through their products and resources!
This is a 100% non-profit brand apparel created by Bill and Victoria Strong in honor of their daughter, Gwendolyn. She was diagnosed with Spinal Muscular Atrophy (SMA) at 6 months and lived to be 7 years old. This organization aims to support projects related to inclusion and disability awareness.
This non-profit "makes apparel with purpose for upstanders who embraces differences, or rebels" as they like to call them. Their son, Wilson, has autism and he has lit a fire to create awareness and advocacy in the disability community through powerful messages on apparel.
This is a company created by fellow HIE mama, Kim Powers in support of her incredible daughter, Kennedy Blair. Like Karter, Kennedy suffered an HIE injury at birth. They have created a line of shirts and candles that spread and share inclusive and positive messages!
We love this Iowa company! They are all about spreading messages of kindness, affirmation, and compassion. These notes of kindness are a small thing that leave a big impact. We have purchased the healthcare, grief, warrior, and thankful packs. We leave these for our nurses, hospital staff, and send them to friends or family when things get tough. Check these out!
These fun, kid-friendly dinosaur stickers feature and represent a variety of medical needs including: feeding tubes, braces, trachs, blood transfusions, AAC, prosthetics, wheelchairs, gait trainers, and more! Purchase these to raise awareness and help kids with disabilities see themselves represented!
Smashing fashion with function, BILLY Footwear incorporates zippers that go along the side of the shoes and around the toe, allowing the upper of each shoe to open and fold over completely. Thus the wearer can place his or her foot onto the shoe footbed unobstructed. Then with a tug on the zipper-pull the shoe closes and secures overtop t
Smashing fashion with function, BILLY Footwear incorporates zippers that go along the side of the shoes and around the toe, allowing the upper of each shoe to open and fold over completely. Thus the wearer can place his or her foot onto the shoe footbed unobstructed. Then with a tug on the zipper-pull the shoe closes and secures overtop the user's foot. Shop with our link to receive 10% off every order!
Madeline Cheney provides real, honest, raw topics regarding parenting a child with medical complexities. Her son Kimball and her journey since his arrival inspired the show. Episodes consist of her experiences in special needs parenting, parent guests sharing their stories, and education provided by professionals. Visit the website or any streaming app to tune in!
In her book, Julie Keon shares her journey and insight on raising her daughter who experienced a birth injury that lead to a lifetime of medically complexities and grief. She gifted us a signed copy when Karter was born. Her advice and perspective is spot on (in our opinion).
Kids Beyond Limits includes success stories of children with a vast range of difficult challenges—from autism to complex genetic issues. It helps all children maximize their potential, no matter what their diagnosis. Anat Baniel Method® NeuroMovement® is truly holistic and in accord with how the brain grows.
World-renowned experts provide the latest information for parents and grandparents caring for a child who has cerebral palsy.
Through deeply personal conversations, Oprah Winfrey and renowned brain and trauma expert Dr. Bruce Perry offer a groundbreaking and profound shift from asking “What’s wrong with you?” to “What happened to you?”
A great read on neuroplasticity! This books includes stories from experts on the cusp of Brain Science!
These stories of children’s recovery and improvements are a revelation―surprising, inspiring, and illuminating. They offer real hope for some of the world’s most vulnerable children and a better understanding of how the baby brain grows and recovers.
One in five people in the United States lives with a disability. Some disabilities are visible, others less apparent—but all are underrepresented in media and popular culture. Now, just in time for the thirtieth anniversary of the Americans with Disabilities Act, activist Alice Wong brings together this urgent, galvanizing collection of contemporary essays by disabled people.
An approachable guide to being a thoughtful, informed ally to disabled people, with actionable steps for what to say and do (and what not to do) and how you can help make the world a more inclusive place
Did you know sleep deprivation is an actual form of torture? And yet, special needs parents are one of the most sleep-deprived groups of people on the planet. When you research the health effects of sleep deprivation, it's alarming. Everyone needs sleep to function. It's vital to your physical and mental health. But when you have a child with a neurological disability, independent sleep can be very challenging to accomplish for both child and caregiver alike.
For children with cerebral palsy or other severe neurological conditions, muscle tone, body pain, muscle spasms, seizures, anxiety, and respiratory problems all contribute to sleep problems. Couple this with a child who can't explain with words or communicate what is going on, and it's no wonder parents experience caregiver burnout. It's exhausting and defeating for everyone.
Of course we try all the "sleep tricks" such as essential oils, weighted blankets, bedtime routines, sound machines, black-out curtains, etc. But for "our" kids, there sleep challenges go beyond what is typical. Sometimes, or most of the time, kids like Karter need more specialized supports.
We have yet to find the perfect solution for Karter. However, some supports do exist! They may help improve your child's ability to achieve independent sleep. Click on the link below to view some of our sleep solutions. Perhaps there may be something that can make a difference for your child.
There's nothing that makes our blood boil more than when an insurance denies a necessary service or equipment. But in our world this is bound to happen.
So what do you do? You roll up your sleeves and get to work. The first time this happened I wasn't sure where to start. Here are some things to help you get started winning your own appeal...
1) You will likely need letters of support from specialists and physicians. Make a list of all the provider(s) that could support your need. Then contact them ASAP! It can take doctors weeks to put together a letter. Call once a week to keep them working!
2) Think about all the reasons why the denied support is necessary for your child. How will he/she benefit? Every reason matters.
3) Everything is about money. Show the how it will be cost effective for them to pay for this support. When nursing care was denied I went through all our insurance statements (Yes...this took HOURS). I included exactly how much it costs for medications, therapies, EEGs, hospitalizations, etc. I then explained in detail, bullet by bullet, how homecare nursing can help prevent the need for MORE. And, consequently, save them money.
Here is a link I used to help structure my own letters: Writing Winning Insurance Appeal Letters.
The Minnesota waiver system is complicated, inconsistent, and cumbersome for families to access and navigate. Still, our state does it better than most. If you're beginning this journey, here are some helpful FYI's and resources. And some other tips based on our experience!
Minnesotans with disabilities or chronic illnesses who need certain levels of care may qualify for the state's home and community-based waiver programs.
Thus, if you are a parent and are wondering how the heck to access this system please know....