"Do you know what grit means? Well, my mom says I have it. Having grit means you keep working toward your goal even when it's hard. Someone who has grit is fearless and unstoppable." - Frankie
Graham Hale Gardner died before turning twenty-three and never learned to walk or speak due to severe cerebral palsy complicated by epilepsy. Yet he left a legacy of love and compassion that deeply moved scores of people from widely different backgrounds.
Do you need a way to discuss Cerebral Palsy with your child, friends, family, or caregivers? Xander explains about cerebral palsy, what causes it, the 4 types, and how it affects him and his friends who also have cerebral palsy. He also shows how he is an important member of his family and how what HE can do MATTERS.
A bold and contemporary discourse of the intersection of disability studies and queer studies
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 accessible, inclusive place.
Judy Heumann’s candid, intimate, and irreverent memoir about resistance to exclusion, invites readers to imagine and make real a world in which we all belong.
Author Andrew Soloman proposes that being exceptional is at the core of the human condition—that difference is what unites us.
Written by cerebral palsy specialists, Drs. Peter Rosenbaum and Lewis Rosenbloom, this book gives a comprehensive, yet accessible and readable overview of cerebral palsy across the lifespan.
Comedian Zach Anner opens his frank and devilishly funny book, If at Birth You Don't Succeed, with an admission: he botched his own birth. Two months early, underweight and under-prepared for life, he entered the world with cerebral palsy and an uncertain future.
Written for both clinicians and families, this comprehensive guide to complex cerebral palsy utilizes the ICF to organize and guide the subject matter in order to assist both clinicians and families to maximize participation for those who are impacted more significantly by cerebral palsy.
For three editions now, a team of experts associated with the Cerebral Palsy Program at the Alfred I. duPont Hospital for Children have shared vital information through this authoritative resource for parents, who will turn to it time and time again as their child grows.
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.
My boys were exactly the same amazing, lovable, adorable, brilliant little boys after the diagnosis, that they had been before it. The exact same.
Shelby Nurse discusses how pain has been part of the reality throughout her life. In this video Shelby talks about what strategies and pain management techniques have worked for her and how this have changed and different times.
I suppose there has to be one silver lining that comes out of being sheltered in place for months on end (due to Covid-19): I’ve finally been catching up on sleep. The recommended nightly hours of sleep is between 7 and 9 hours . For me, getting a good night’s sleep has been the best way to regain a sense of control and ease during such unnerving times. Not only does sleep improve mood and
There is insufficient research on adults living with cerebral palsy, (as referenced in my previous blog post on cerebral palsy and adulthood). Although there is a paucity of studies examining mental health in this population, medical researchers have speculated that the rate of depression is three to four times higher in people with disabilities such as CP than it is in the general population.
Receiving early diagnoses or high‐risk for CP classification is a parent priority. Alignment between parents and providers exists for International Classification of Function domains of body functions/structures and activity, but less for those of environment, personal, and participation.
My name is Nathalie Maitre, I work at Nationwide Children's Hospital. I'm a physician and a researcher
Owen is our third baby and after a healthy pregnancy and making it to 38 weeks, I thought we would coast into life with three kids and adapt to the beautiful chaos that is life outnumbered by little ones. Somewhere in between, I ended up watching as my newborn baby was packed up into a life-flight helicopter and whisked away before I even got a chance to hold him. I would do whatever it took to get to Owen at Nationwide Children’s Hospital, I would will him from hundreds of miles away to hang on, to fight long enough for me to get there – and then we could do “whatever it took” together.
As a physician and researcher, I skeptically looked forward to learning more about mindfulness practice, because there is evidence it helps with stress management, self-regulation, focus, productivity and happiness. As a mom, I felt that weird mix of guilt that I was going to focus on “not-my-children” for a whole day, excited anticipation and anxiety that maybe I would be a complete failure at this. It turns out all the mental baggage I took into the workshop was the exact opposite of what mindfulness tries to achieve. The daily practice has since changed my life.
What we learned from our defensive lifestyle is that it’s normal to feel this way. It is a lot of information to process all at once and it’s an emotional rollercoaster immediately following a CP diagnosis. We realized that our diagnosis wasn’t what defined our child. She is an amazing little girl who is full of personality, she isn’t a fragile flower that needs to be sheltered, and by realizing this we were able to go on the offensive, and attack the challenges head on.
PTSD can be common in parents after a child with Cerebral Palsy has left the NICU. One of the hardest days of my life as a NICU parent was not what I would have expected it to be. It was the day I went home without my baby, after spending every waking moment since my emergency C-section by his incubator. I never knew I had a dream about what it would be like to have a baby until that dream was taken away.
