The hardest part of raising two children with Cerebral Palsy is the fact that we live in a world that refuses to adapt to anything beyond ordinary. And I have always -- always -- known that Benjamin and Mason were far beyond ordinary.
Students with disabilities often need extra support throughout the day to access their environment, the academic materials, and learn alongside their peers. A Personal Care Attendant in the school setting is often utilized to support the students needs.
Children and teens with cerebral palsy and other disabilities may need the assistance of an individual who has a background in healthcare and the skills to provide the services essential to quality care.
Personal Care Attendants for adults with cerebral palsy and other disabilities provide a variety of essential functions that ensure safety, health, wellbeing and overall impact quality of life.
An employment agreement spells out the rules, rights and responsibilities for both the Personal Care Attendant (the employee) and the individual with cerebral palsy or family who is hiring the Personal Care Attendant.
Author David Stoner provides insight into his experience with Personal Care Attendants through the years as his needs and his family's needs have changed.
Access2CRT is here to empower advocates with the information and resources needed to promote and protect access to Complex Rehab Technology (CRT) access for people with disabilities and Cerebral Palsy.
Mental health care should be included at the outset, as part of discussions around physical, occupational, and speech therapies. I’ve seen studies on cerebral palsy’s effect on caregiver mental health — and that is important. Caregivers are part of the cerebral palsy community, too. It’s an interdependent one. There’s not enough about the nuance around how having cerebral palsy affects mental health.”
We rely on assistive technology for everything from holding utensils better to using a complex communication device. Makers Making Change is helping to create both custom and affordable assistive tech for all abilities and needs.
LittleWins harnesses the power of community to empower people with disabilities with the tools they need to thrive! From buying, selling, and donating medical equipment and supplies, to obtaining needed information and connecting with others – LittleWins is the one-stop community resource for families, parents, caregivers, in-home nurses, and all people with disabilities.
Don't miss Part 2 of this very special podcast series when podcast host Cynthia Frisina dives deeper with Michael Kutcher into his life growing up with cerebral palsy, his "coming of age" as the twin brother of actor Christopher "Ashton" Kutcher, and what Michael is doing now with his new "diffability" concept and continued advocacy work on behalf of people with disabilities and organ transplants recently featured in Forbes Magazine https://www.forbes.com/sites/karlmoore/2021/07/08/michael-kutcher-on-turning-obstacles-into-opportunities/?sh=6ed0e70f722f
A parent's perspective as she recalls the moment she realized that a wheelchair meant freedom for her son and not a barrier to his progress.
Dating can be scary, all of the questions that go through your head before a first date can often be overwhelming. What do I wear? What do we talk about? Does my breath stink? These are common concerns before any normal date. My brain was wrapping itself around the idea that this was my FIRST DATE EVER.
On this episode, I have the honor of talking with Wendy Pierce, MD, a pediatric physiatrist at Colorado Children's Hospital about physiatry, also known as Physical Medicine and Rehabilitation. This fantastic field of medicine can be helpful for individuals with cerebral palsy across with lifespan, but it has a confusing name and sometimes a confusing job description. So we set out to help listeners better understand what a physiatrist does.
Wonder what it's like to grow up as Michael Kutcher? On this episode of "Let's Talk CP" Michael Kutcher and host Cynthia Frisina dive deep into Michael's childhood and journey to adulthood - including the good, the not so good and the very surprising. You won't want to miss what Michael has to say in this very candid and intimate conversation.
Our “Let’s Talk CP” podcast series kicks off with a great conversation about what questions to ask your child’s clinician when your child has cerebral palsy. How should you prepare for a medical appointment? What questions should you ask? Should you get a second opinion? Join Cerebral Palsy Foundation host, Cynthia Frisina as she shares candid talk, lessons learned and great advice with fellow moms, Wendy Sullivan and Jennifer Lyman. This episode is made possible with the support of Ipsen Biopharmaceuticals.
As your child with CP is becoming a teenager, there are a couple of things you may want to think about.
It's important for all of us who are imposed with certain physical boundary conditions to push those boundary conditions as far as possible and maintain as much independence as absolutely possible.
All adolescents and young adults experience some peer pressure to engage in drinking or other risky behaviors. Adolescents with cerebral palsy engage in risky behaviors just like other teenagers. Some families find it helpful to sign what's called, a Contract for Life, or a Contract for Safety, with their child. The parent agrees not to yell in the moment and to have a conversation about it the next day. That's one way that adolescents and parents can create some zone of safety around drinking.
Children with cerebral palsy have more complex self-management and self-care demands than children who are typically developing. They have to learn how to deal with medications and they may have to deal with medical equipment. At some point, they're going to have to learn about medical appointments.
A year ago, I wrote in my Forbes column about the decades-long pattern of Pride Month celebrations excluding people with disabilities. The underlying reason why Pride events were (and still are) mostly inaccessible for people with disabilities, both in terms of physical spaces and social acceptance, is that mainstream media and public don’t see them having identities outside of their disabilities.
I have cerebral palsy spastic diplegia. So it affects my legs and sometimes my fine motor skills. I walk with two canes. I do things a little slower, but I get things done.
One thing that parents can say to start a conversation with their kids is, "Let's talk".
As we all know, becoming a teenager means significant upheaval, not only physically, but in terms of friendships, in terms of learning, and life outlook. This is also true for adolescents with cerebral palsy and other developmental disabilities. We know that whilst we may of spent a lot of time focusing on their physical abilities and other difficulties it is not the only part of their life.