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. We will continue to add content along the way. Scroll this section for all sorts of tips, files, and things that may help you on your own journey!
When you have a child with a severe neurological disability you will need help at some point. As in SKILLED help. People who can provide the care to your complex child. Every caregiver I have talked to recognizes the need for consistent, reliable care. The reality is, this often comes from nurses or personal care assistance (PCAs)
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.
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....
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.
We've also found many local resources. Below are some of our favorites in Minnesota.
My dear friend, Melissa, shares her perspective on what it's like raising a child who is severely affected by a rare genetic disorder. Her positive outlook and attitude are key factors in her resilience and accomplishments.
Katherine Rafferty, assistant teaching professor at Iowa State, sheds light on how having a medically complex child affects families.
Julie Keon is an accomplished author and blogger. She uses wordsmith and experience to bring readers into the world of raising a medically complex, severely affected child. She sent us a copy of her book when Karter was born. It's available for purchase on her site.
Firefly is a company that specializes in making functional, quality products for children who have physical impairments. They also feature a blog, capturing so many insights from special needs moms all over the world.
Samantha Isaacs brings us to tears as her words beautifully describe what all special needs moms feel, think, and wonder about their child who a disability. If you haven't read this, please take a few minutes to do so!
I saw this article by Erin Croyle, and could have written it myself! This article makes the very important distinction between a caregiver and parent. When your child requires 24/7 care, the role and life is very different. Great read!