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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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Mental Wellness Among Adults with Cerebral Palsy
Mental health care should be included at the outset, as part of discussions around physical, occupational, and speech therapies. I’ve seen studies on cerebral palsy’s effect on caregiver mental health — and that is important. Caregivers are part of the cerebral palsy community, too. It’s an interdependent one. There’s not enough about the nuance around how having cerebral palsy affects mental health.”
Drawing of the profile of a person with a heart in the center of the brain
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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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Head Over Wheels: His Story
Dating can be scary, all of the questions that go through your head before a first date can often be overwhelming. What do I wear? What do we talk about? Does my breath stink? These are common concerns before any normal date. My brain was wrapping itself around the idea that this was my FIRST DATE EVER.
Photo of David Stoner, wearing a blue shirt, sitting in his black wheel chair with a tree in the 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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State of the Evidence Traffic Lights 2019
Purpose of review: Cerebral palsy is the most common physical disability of childhood, but the rate is falling, and severity is lessening. We conducted a systematic overview of best available evidence (2012-2019), appraising evidence using GRADE and the Evidence Alert Traffic Light System and then aggregated the new findings with our previous 2013 findings. This article summarizes the best available evidence interventions for preventing and managing cerebral palsy in 2019.
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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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People with Disabilities Also Have Diverse Sexualities and Gender Identities
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.
"People with Disabilities Also Have Diverse Sexualities and Gender Identities" is written in text above a representation of different people, some using wheelchairs, some using crutches, some standing without assistance. The representations of people are all in different colors reminiscent of the pride flag
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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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