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Saved by the Mom Squad
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
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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.
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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
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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.
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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.
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My Journey of Finding Accessible Apartments
As an undergraduate student in a major metropolitan city like NYC, the thought of finding a place to live after graduation was very daunting. I didn’t have many options for accessible dorms on campus, so I could only wonder how much more difficult it’d be to find a “real-life adult” apartment that I could afford as a 20-something-year-old. My apartment search began one year earlier than
Words "My Journey of Finding Accessible Apartments" with a picture of an apartment building with a magnifying glass over it.
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30th Anniversary of the Americans with Disabilities Act
The historic Americans with Disabilities Act (ADA) was signed into law on July 26, 1990, by President George H.W. Bush — marking this month its 30th anniversary. The ADA was the country’s first-ever comprehensive civil rights law for people with disabilities, offering protection against discrimination and imposing accessibility requirements in workplaces and the public. The passage of this law was
Text: 30th Anniversary of the Americans with Disabilities Act
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Will the “Post-Pandemic” Workplace Be More Inclusive of Employees with Disabilities?
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
Sarah Kim sitting at a desk doing work. Text is article title Will the “Post-Pandemic” Workplace Be More Inclusive of Employees with Disabilities?
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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"
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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
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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"
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What Companies and Schools Should Learn About Disability Accommodations from the COVID-19 Outbreak
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.
"Learning from Disability Accommodations for COVID-19" written in text next to an image of writer, Sarah Kim
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How I’ve Learned to Celebrate My Late Birth Mother
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.
"How I’ve Learned to Celebrate My Late Birth Mother" written in text to the right of an image or writer, Sarah Kim, as a child
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Friendships in the Time of COVID-19
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.
"Friendships in the Time of COVID-19" written in text below an image of writer Sarah Kim
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Growing Up in the 90s & 00s with Cerebral Palsy
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.
"Growing Up in the 90's and 00's with Cerebral Palsy" shown in text surrounded by images of 90's reminiscent items such as roller skates, a boombox, and a gameboy, all against a green background.
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Navigating CP and Depression at the Same Time
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.
"Navigating CP and Depression at the Same Time" is shown in text above an illustration of a person in a wheelchair colored in blue
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Supporting Reading for a Child who is Non-Verbal
I'm going to be talking about AAC and reading and some different things that you might not think about when you are doing those types of activities. When you're supporting reading for a nonverbal child, whether they use a high-tech system or a light-tech system, like a paperboard, you want to make sure that they have plenty of the opportunities to contribute to the experience. You want to be able to comment. You want to be able to talk about the people, the places, the things, and maybe the feelings that they have.
Photo of Pati King Debaun with words that say Get the child engaged in reading with you
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What Is The Least Dangerous Assumption?
Every educator needs to make a decision about technology they need to put in place. They're not sure if they should put Option A in place or Option B in place. This can be particularly difficult in the world of disabilities because there might not always be a perfect answer. Teachers can look to this solution, using the least dangerous assumption to make good decisions about what technology might be best.
White image on green background that has the word goal in the center
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