Tips for Managing HomeCare Staff
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)
Sleep Challenges and Solutions: Beyond Neurotypical Interventions
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.
How to Win an Insurance Appeal
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.
Organizations we love
Minnesota Specific Resources
TheSpecialMom.com
What I Would Tell You
TheConversation.com
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.
TheConversation.com
What I Would Tell You
TheConversation.com
Katherine Rafferty, assistant teaching professor at Iowa State, sheds light on how having a medically complex child affects families.
What I Would Tell You
What I Would Tell You
What I Would Tell You
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
The Poem I Wish my Child With a Disability Would Write Me
What I Would Tell You
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.
The Poem I Wish my Child With a Disability Would Write Me
The Poem I Wish my Child With a Disability Would Write Me
The Poem I Wish my Child With a Disability Would Write Me
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!
Caregiving and Parenting are NOT the Same
The Poem I Wish my Child With a Disability Would Write Me
The Poem I Wish my Child With a Disability Would Write Me
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!