April 29, 2007
Cerebral Palsy: Etiquette When Discussing Disabilities?
An interesting idea from the Indiana University- using “proper etiquette” describing a person disabilities.
Do you agree or disagree with their suggestions? Do you have any you would add? Is this a bad idea that further emphasizes our differences- a case of political correctness gone too far? Please post your thoughts in comments section.
Speaking of disabilities. “People first” is the most important principle in communicating with and about people with disabilities, said Vicki Pappas, director of the Center for Planning and Policy Studies at the Indiana Institute on Disability and Community. This standard applies in a literal sense when describing people — “person with autism” is appropriate; “autistic person” is not — and in a figurative sense when interacting with someone who has a disability. “People with disabilities would prefer to be seen as people, not as objects of pity or as heroes who have overcome adversity,” she said. “When you meet someone who has a disability, say hello, make eye contact, and give yourself time to get to know that person like you would with any new acquaintance.” Below are more of Pappas’s tips for effective communication.
DO use person-first language, especially in print. Regardless of the particular disability, put the person before the condition in every description. For example: “man who has cerebral palsy,” “girl who is deaf,” “teacher with epilepsy.”
DON’T mention a disability if it is not relevant. “If you are writing an article about a professor’s research, and that person happens to use a wheelchair, you don’t need to mention it unless it relates somehow to the research process. This is just the same principle you would use in deciding whether to mention that someone is Jewish or Latino,” Pappas said.
DO use specific terminology. If it is important to describe a person’s disability, be straightforward and avoid terminology like “handicapable,” “differently abled” or “special.” This type of verbiage comes across as condescending, Pappas said.
DON’T make someone a hero for an ordinary feat. Avoid characterizing everyday activities as huge accomplishments for people with disabilities. “I’m all for including a bride with hearing loss in a wedding special, but when the headline is ‘Deaf Woman Gets Married,’ that’s insulting,” Pappas said.
DO greet people at their eye level. When talking with a person who uses a wheelchair, it is appropriate to sit or crouch down in order to talk face-to-face, Pappas said. “Even if you are speaking through an interpreter, it’s important to make that direct eye contact,” she said. Similarly, it is best to approach a person who is blind by announcing your presence.
DON’T worry about common phrases. “It is not a big deal if you say ‘See you later’ to someone who is blind. No one is going to be offended by these types of expressions. Relax and use your natural manner of speaking,” she said.
DO respect personal space. “It’s okay to offer assistance in a polite manner such as holding a door open. Beyond that it is best to ask first rather than to rush in and grab a person who appears to be struggling,” Pappas said. A final note on personal space: a wheelchair should be approached as though it were part of the body — don’t sit or lean on someone’s wheelchair unless you know them very well.
To read entire article visit http://newsinfo.iu.edu/tips/page/normal/4988.html
Woman with Cerebral Palsy will Fly Around the World Raising Awareness
Templeton, CA, April 29, 2007 Adele Schneidereit, a courageous woman with Cerebral Palsy has declared she will fly around the World to spotlight the urgent need to find a cure for CP.
MS. Schneidereit, not yet a pilot, will video-chronicle the trials, tribulations, and successes of a person with Cerebral Palsy preparing for her first flight, the rigors of a flight physical, successive learning flights, ground school, testing and finally a flight around the world.
Inspire the World Foundation (www.inspiretheworldfoundation.org), a non-profit organization co-founded by MS. Schneidereit, is dedicated to raising global awareness and money for research to find a cure for CP. Although other nonprofit organizations claim that Cerebral Palsy is incurable, they respectfully disagree. The cure for Cerebral Palsy exists; it just hasn’t been found yet. They believe the cure will be discovered through new technologies. MS. Schneidereit looks forward to fund-raising and learning to fly for the purpose of wiping out the disorder world wide. Her voyage is set to take place in the Spring of 2009.
To stay up to date with Adele’s flight progress or to help support Inspire the World Foundation, visit them online at: http://www.inspiretheworldfoundation.org
April 28, 2007
Portable Potty for Children with Cerebral Palsy and Special Needs
A product recommended by many moms – “On The Go Potty .” It is a portable potty that works well for children with special needs. Its totally portable and comes with self absorbing liners and disposable bags. No public toilet seats! It is great for travel or to take anywhere that you may not have access to a sanitary bathroom. It’s a clean potty for your child no matter where you go.
Sturdy well-balanced base helps your child feel secure.
Legs lock into place when opened.
Folds flat so it can fit in a purse or diaper bag.
A great potty to keep in your car, boat, camper or RV.
Uses self-absorbing, disposable liners that discard like a diaper.
Disposable liners hold up to 5 ounces of liquid.
Liners are lightly scented to absorb odors.
Liner handles secure to the potty and tie closed for disposal.
Drawstring carrying bag included.
Comes with 3 super absorbent, leak-proof and easy-to-use disposable liners
For ages 2 years and up to 50lbs
Order Brachiation Ladder Kits Online
I have written about Ben before, ( article on brachiation ladder kits here) here and how he began building brachiation ladders kits after his grandson was diagnosed with cerebral palsy. You can now order his kits ( and see photos too) online on his website : http://www.brachiationkits.com/index.html
The kits are made almost at cost- they really are a labor of love for Ben.
April 27, 2007
Cerebral Palsy and Children with CVI (Cortical Visual Impairment)
A large percentage of children with cerebral palsy also have CVI (Cortical Visual Impairment). In fact, 80% of children with cerebral palsy also have CVI.
The definition: Cortical Visual Impairment (CVI) refers to visual impairment due to damage to the visual cortex, the posterior visual pathways or both.
One of the major causes of CVI is asphyxia, meaning that the oxygen supply to the brain was at some point disrupted. Because the visual cortex part of the brain is furthest from the main blood supply (which is how oxygen reaches the brain), the visual cortex is most vulnerable in case of interruption of oxygen. When oxygen is not allowed to get to the brain other areas are also affected which is why CVI rarely occurs on its own without other problems.
Other causes of CVI are developmental brain defects, birth injuries, head injuries and infections of the central nervous system such as encephalitis or meningitis.
If your child suffers from CVI or cerebral palsy- and you are not sure if it was because a birth injury please contact 4MyChild Live CareCenter Specialists for help.
April 25, 2007
Cerebral Palsy: Learn to Ride a Two Wheel Conventional Bike!
The program “Lose the Training Wheels”
is taught at several different locations and camps throughout the United States using different adaptive bikes. The goal of Lose the Training Wheels is to have children- and adults- with physical limitations such as cerebral palsy be able to ride a 2 wheeled conventional bike.
You can visit their site to get a current list of camp locations and where you can sign up for the program.
April 21, 2007
Cerebral Palsy and Stem Cell Treatment- Dramatic Results in China
Dramatic Improvement for 19-Year-Old Hungarian Cerebral Palsy Sufferer After Stem Cell Treatment
World-Class Stem Cell Treatment Facility Follows up Parkinson’s Successes with Another Medical Triumph, Brings New Hope of Effective Treatment for Thousands with CP
BEIJING, April 19, 2007 — Tiantan Puhua Neurosurgical Hospital, the world’s leading center for effective treatment of Parkinson’s disease and stroke, today here announced a breakthrough in the worldwide treatment of Cerebral Palsy (CP) by introducing neural stem cells through a safe, non-evasive procedure to 19-year-old Gabor Bocskai from Hungary.
The stem cells are introduced into the patient’s spinal cord fluid (via Lumbar Puncture) and by the spinal fluid circulation goes directly into the brain. The successful procedure, performed at China’s top stem cell facility, makes Mr. Bocskai the first teenage European CP patient to see rapid improvement through stem cell therapy. Unedited videos taken before and after Mr. Bocskai’s injections dramatically demonstrate the profound improvement in his 19-year battle to walk, write, focus his eyes, concentrate and overcome the many other detrimental effects resulting from the CP he acquired at birth. More details and the videos have been published on China’s leading Stem Cell News site at http://www.stemcellschina.com.
Some of Mr. Bocskai’s most noticeable and immediate physical improvements after the eight-week stem cell therapy program include improved vision, increased eye focus and better concentration on one subject. He also reported clearer writing, enhanced muscle tone, the ability to sit up unsupported and a new capability to walk and swim in an unassisted manner. As a lifelong quadriplegic with paralysis in his lower limbs, Mr. Bocskai was never able to walk independently, using a wheelchair for transportation. Within four months of the initial treatment, he stated that he was able to walk with the help of a walker and no other support, and at a rate three times faster than ever before with increased maneuverability in his legs and torso. Even his speech became clearer and faster.
To read complete article visit http://www.ereleases.com/pr/20070419006.html
April 20, 2007
Florida to Cut Funding for People with Disabilities?
The Florida Legislature is considering capping services provided by the Agency for Persons with Disabilities. Advocates for the disabled – and several Democratic lawmakers – have urged budget writers to dip into reserves, often called the “rainy day fund,” to avoid making cuts that will severely affect people who are among the state’s most vulnerable.
The state’s Agency for Persons with Disabilities is facing a $150 million reduction in funding.
Hundred of families converged on the Capitol carrying umbrellas despite the sunshine- a call to continue to dip into the “rainy day fund.”
The House has already voted to shift some people out of a state program that provides up to 33 services, such as home nurses or guardians. About 8,500 people would be shifted into a new program with just 11 types of services.
The Senate is proposing deeper cuts to programs funded by the agency that would affect more people, including people in group homes.
Joe Aniello, president of United Cerebral Palsy of South Florida, said about 20 group homes with about six residents each in Miami-Dade, Broward and Palm Beach counties stand to lose their funding and would have to close if the Senate’s proposal is adopted as is.
He has no idea where the residents would go, and said he doesn’t think lawmakers do either.
Several lawmakers have said they don’t want to hurt people enrolled in the program. However, the agency has outspent its budget. That, in turn, prevents new families from getting services and keeps the agency in the red.
Legislative budget writers and Gov. Charlie Crist promised to try to find money to help.
April 16, 2007
Getting a Donated AmTryke Therapeutic Tricycle for Children with Cerebral Palsy
The website www.ambucs.com offers children with disabilities the chance for independent movement by donating Amtrykes to special needs kids. For years, the AmTryke has benefited and delighted children with disabilities. It gives children the opportunity to experience the fun and independence of riding a bicycle with their siblings and friends.
This unique tricycle is hand and/or foot powered. It improves motor coordination, increases self-esteem and is fun to ride!
You can buy the tryke directly from them, get a partial donation or ask for a tryke to be donated. In return they ask that you donate the trike back to them when your child outgrows it so it can be placed with another special needs child.
A form will need to to be filled out by your child’s therapist requesting the Amtryke describing your child’s needs.
Vacation and In-Home Respite Care
Professional Education and Respite Service LLC is unique in that they will travel to come to your home.
They have 12 professional staff members ready to travel to you via bus,
train, plane, etc. to provide 24 or more hour vacation respites for
you and your family. They will either stay with your loved one or
accompany you on your trip. You can visit Professional Education and
Respite Service LLC at www.vacationrespite.com for more information or
call toll free at 888-664-9886. Costs start from 16.00/hour for licenced, fully
insured, experienced Special Educators or Mental Health Professionals
who have worked extensively and provide educational and meaningful
activities with children and adults with a variety of disabilities, including cerebral palsy.
