When parents are told their child has one of the most complex conditions they could face, they need emotional support to soothe their hearts, and accurate information about what they can expect and what they can do about it.
One small group of American parents has harnessed their own intense experiences with cerebral palsy to create a tool kit that delivers on just that yearning.
Michele Shusterman, Founder and President of CP NOW, was (and still is) married to a doctor when their daughter was diagnosed with cerebral palsy in 2008. And even with this medical expertise right there at home, easily available, the Shustermans struggled to develop more than a basic understanding of cerebral palsy.
The volume of information widely available was seemingly wonderful, but there was a lot of confusing and misinformation.
Together, the Shustermans explored numerous journals and spent hours reviewing them. They had the background and expertise to really understand what they were reading but still, while it strengthened the way they supported their daughter’s development, it was not nearly the whole picture.
“I realised that even the little information we had access to – information that many others didn’t have – potentially gave our daughter better opportunities for reaching her greatest potential,” says Michele.
“This realisation weighed heavily on me and motivated me to develop supportive and vetted educational resources for families and adults with cerebral palsy.
“I wanted everyone to be in the best possible position to advocate for their loved one, or for themselves, and to live their best life,” she says.
Developing the tool kit
Michele says the intent was to improve knowledge about cerebral palsy among families and to help them interact with clinicians less familiar with its impact on the child and family.
“We also wanted to give clinicians a tool to help them in delivering the diagnosis to families,” she says.
A natural starting place for these efforts was with the formation of a group of parents prepared to help drive the tool kit’s content development.
The group discussed their different experiences and perspectives in receiving the diagnosis, and what they felt they needed at the time and didn’t receive.
These discussions gave solid foundations to the tool kit’s content.
“By providing positive examples of adults living with different severities of cerebral palsy, easily searchable keywords and detailed, yet easy to understand information, we created a resource that works for all parents and caregivers,” says Michele.
CP NOW recruited a wide variety of professionals to lend their expertise with cerebral palsy to the tool kit’s development. These professionals included:
- developmental pediatricians
- orthopedic surgeons
- speech therapists
- physical therapists
- occupational therapists
- special needs estate planners.
“The combined voices of these experts and parents allowed us to present understandable, accessible, thorough, hopeful and scientifically correct information,” Michele says.
“One of the primary mechanisms for connecting as many families as possible with this information has been to make it publicly available for free on the CP NOW website.
“Rather than having to work hard to spread the word about this tool kit, we’ve found that many hospitals, therapy centres and professionals are reaching out to us,” she says.
“But we continue to leverage our relationships with other organisations and industries to improve awareness about, and access to, the tool kit.”
Is the tool kit really helping families?
It would seem the proof is very much in the pudding on this one. Families are accessing the tool kit in droves and leaving phenomenal reviews in their wake.
There have been more than 800 copies sold on Amazon, 200 copies purchased directly by Nemours/Alfred I. DuPont Hospital for Children, and 50 by Mission Children’s Hospital in North Carolina.
It has been downloaded in over 65 different countries including Australia, the United States, Canada, Zimbabwe, Japan, Israel, Spain, Brazil, Romania, Germany, Kenya, Vietnam, Greece and Thailand.
On the Amazon website, you will find just a fraction of the feedback Michele has received about the tool kit. Feedback like:
“When my son was born, I scoured the internet for helpful resources for cerebral palsy. There is wonderful information and there is misinformation, lots of it. I am so glad this resource is available, it exactly what would have met my needs then.”– By Nicholas on June 24, 2016
“I hope that every parent of a child with cerebral palsy, and every clinician treating a child with cerebral palsy, finds this book. Nowhere else can you get such a clear and supportive overview of what you need to know and what you can do to help your child and support your family. The author has pulled together resources from clinicians and therapists around the world that you don’t have to be an expert to understand.” By Other1 on April 7, 2017
“It is the most informative book I have ever read to help people understand and navigate the many challenges facing those with CP.” – By Mary M. Bower on April 22, 2016.
In 2016, Michele and CP NOW were awarded the American Academy of Cerebral Palsy and Developmental Medicine ‘Making a Difference’ Award.
What’s next for the tool kit?
“Our ultimate and ongoing goal is to connect as many families as possible around the world with reliable and comprehensive information about cerebral palsy and its related conditions in an emotionally supportive context,” says Michele.
“We want to empower families with knowledge in order for them to advocate on behalf of their family member and become a more confident, active partner in their care and treatment.
“CP NOW has partnered with professionals worldwide to translate the tool kit. A Spanish translation has just been published, and a Hebrew version is on the way. And, professionals in Holland are eager to begin working on a Dutch translation as well.
“We are a young organisation and we need financial support to expand our reach into other countries who wish to access the tool kit in their own language,” Michele says.
As a companion resource for the tool kit, a wellbeing guide for parents and caregivers (developed in partnership with Dr. Elise Davis from the University of Melbourne) has just been made available for download on the CP NOW website.
Plans are also underway to create educational flyers containing bite size pieces of the tool kit, and to release two new resources later this year.
Download the tool kit for free from the CP NOW website.