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JSH Educational Webinar 3: Power of Language
This webinar with Rachel Byrne, Executive Director of CPF, Ashley Harris Whaley, Director of Communities and Engagement at CPF and individual with with CP, and Debbie Fink, Vice President of Education and Inclusion at the Cerebral Palsy Foundation, overseeing its flagship “Just Say Hi” program, focusses on concepts and definitions addressing disability and how language has evolved.
Power of Language - Webinar Listing Image
JSH Educational Webinar 2: Making Connections
This webinar, with Ashley Harris Whaley, Director of Communities and Engagement, Rachel Byrne, Executive Director of CPF, and Debbie Fink, Vice President of Education and Inclusion at the Cerebral Palsy Foundation, overseeing its flagship “Just Say Hi” program, focusses on the terms "ableism" and "allyship" and ways to facilitate making connections in the schools and communities.
Making Connections - Webinar Listing Image
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
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.
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
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