Learn about Ava's journey with gait analysis and surgery at Gillette Children's.
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 cities and states across the countries are lifting the COVID-19 lockdown orders, people are returning to work at their offices. However, since the virus is still very much going around, employers must be vigilant about keeping their workplaces as safe as possible. Although we might be seeing a sense of “normalcy,” there’s still a long way to go before reaching the pre-pandemic normalcy—if we
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.
I spent many years and many hours learning how to make the body work better, how to bring it out of pain. But that's not the human being alone.
One of the things that was identified through research is that patients with cerebral palsy have higher rates of depression and anxiety than you would see in the general population.
Around the age of six all children are going off to school. Children move from explorative play, which is fairly informal to a much more formal day. That can be a lengthy day and it's quite structured. There are a lot of challenges faced by children with cerebral palsy throughout the school year.
There are a couple of key things to think about in helping children and adolescents make the transition into young adulthood and independence. One of those things is called mastery motivation and we can see mastery motivation early in life. It's the ability to persist in the face of challenge. If you're growing up with a disability, it can be harder to do things. If you are not challenged, if the environment is not set up correctly, or if you don't have the resources, then you start to feel that you can't master certain kinds of tasks.
In order to get a good education, children need to access the curriculum. That's at the heart of their education. Some of the key challenges of getting students both their education and access to their voice in the class is simply understanding. Preparation for the student with disabilities is key. We have to foster success. We have to build a sense of success in the beginning. That starts with understanding the abilities of that student.
As the COVID-19 outbreak continues to sweep through the country, there are increasing orders from local governments for residents to stay at home, unless they’re essential workers. Both professionals and students are relying on Zoom and other video conferencing software to work or learn from the comforts of their home, although such measures, in most cases, were not permitted before the pandemic.
Saturdays were special as a kid growing up in Port Washington, New York. Saturdays meant Burger King outings with my grandparents, a great big slice of trade-marked Hershey’s chocolate pie for me and piping hot oatmeal for them. And we can’t forget about the Kids Meal toys. But on this particular Saturday, everything was different - at the tender age of five, I started to notice that certain aspects of my life were just off.
I don’t know if this is just me, but my time in quarantine has made me have weird flashbacks to my childhood. As a kid growing up with CP, especially with a speech impediment and mobility limitations, my lifeline to making and keeping friends was through AIM (AOL Instant Messenger, for those of you who are too young to remember) and one of the first video chatting platforms, ooVoo. Fast forward 15 years, many of us are in a similar situation. To slow the spread of COVID-19, most of life has moved online, including friendships.
As I progress in my career as a journalist and writer, the more attention and followers I receive on social media. Every so often, I receive a direct message or email from young readers, explaining how I’ve become a role model for them. They express the inspiration they gain from witnessing me not allowing my cerebral palsy get in the way of following my dreams. It was then that I realized I am now the role model that I desperately needed when I was a young girl.
If you have any disability, then you probably have pondered on this question once, or ten times, before: should I self-disclose my disability on the job application form? Unlike going into the job interview, where your visible disability cannot be concealed, the power lies ultimately in you to check that box on the form.
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.
I’m at that age when Facebook friends begin to get engaged and married, and shortly after, have children. So, I feel the pressure to proceed onto the next stage of my adulthood. But, as anyone with cerebral palsy knows, everything in life is a tad more complicated with this disability.
When first meeting a parent who's had a child newly diagnosed with cerebral palsy, I really want to try and help them understand their baby. It can be difficult for parents to take it in all at once and many leave that first interview quite overwhelmed, but you're going to meet some really important and helpful people.