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We got the diagnosis of Cerebral Palsy when Lelia was 18 months. I was really happy, as we didn’t know what was wrong with her before then. She had low tone. She couldn’t roll over. She couldn’t sit up. Of course she didn’t walk. The diagnosis gave it a name, something I could work with, and I became a kind of vigilante mother, determined to get the best care for my daughter.
Photo of Lelia Purky wearing a straw har with a yellow flower with blue doodles
Can Everyone Play? Helpful Tips for Creating Inclusive Accessible Playgrounds
Wouldn’t it be great if inclusive, accessible playgrounds were in every community for all to enjoy? Although progress is being made in certain areas, there is a lot more work to be done to literally level the playing field and help communities and designers understand what makes an inclusive accessible playground and why they are important for people of all abilities.
Smiling boy in yellow adaptive swing
Understanding children with cerebral palsy and bullying: A mixed methods approach
Almost all of us can vividly conjure up an episode of being bullied that occurred in our own lives. Hopefully, fewer of us will have memories of being the bully. These experiences and remembrances often are formative, perceived as hurtful, and can have a long term impact on our health and well-being. For me the memory of being the center of attention in a negative way never quite fades, but with age, the perspective changes to a challenge.
Icon of microscope against documents against gray background
Episode 5: Cerebral Palsy Health. Wendy Pierce, MD: What Does a Physiatrist Do Anyway?
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.
Photo of Wendy Pierce wearing a dark tan sweater on a light tan background
How important is it to control drooling and other frequently asked questions
Drooling is an important problem for many individuals with CP and there are a number of interventions available to treat symptoms. If an individual with CP or their caregiver have concerns about drooling it is important to discuss with a health care provider. Care pathways such as the AACPDM pathway can be a starting point for shared decision making. In all cases, working together as a team is important in choosing the best alternative. Children and adults with CP may have trouble with drooling, or saliva management. In the medical world, drooling is referred to as sialorrhea. Saliva plays an important role in eating but also can interfere with airway clearance and breathing, as well as social participation. When drooling has this kind of impact it becomes important to consider intervention.
Photo of a young man in a blue shirt, wearing dark sunglasses with yellow rims reclining in a wheelchair with a batman printed neck pillow around his neck. He is in a hospital room and has a feeding tube attached to the wheelchair.
Episode 1. Introduction of "Let’s Talk CP". What Questions Should You Be Asking Your Child’s Clinician?
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.
Wendy Sullivan has long blonde hair is smiling and wearing a white suit jacket, Cynthia Frisina has long brown hair and is smiling, wearing a black top and Jen Lyman has long, curly brown hair and is smiling wearing an olive green top.
CP: The Early Years
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.
A screenshot from the YouTube video, "The Early Years"
Mastery Motivation
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.
Representation of a parent cheering on their child with a text bubble above them that reads "You can do it!", while the child who uses a walker prepares to go up the stairs
Accessing the Classroom
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.
A screenshot from the YouTube video, "Accessing the Classroom"