Making a Difference: Cerebral Palsy

Most people are unaware that Cerebral palsy (CP) is actually a term that describes a multitude of disorders, not just one. The word Cerebral refers to issues that deal with the brain, and the word Palsy refers to a person’s ability to maintain balance, posture, and movement.

The main cause of CP is predominantly due to the mother catching an infection or a virus while the fetus is still in utero. These account for 70% of the cases. Some people also attribute it to a lack of oxygen flow to the infant’s brain during labor and delivery, but that is actually a very small percentage.

A child who has CP will show signs early in childhood and they may display floppy limbs, involuntary movements, or exaggerated reflexes, to name just a few. There is no known cure at this time for CP, and most sufferers will require life-long treatment, including physical therapy, medication, and occasional surgery. For many families, these are expensive and emotionally draining times, which is why there are charities to support families who have members with cerebral palsy.

United Cerebral Palsy (UCP) is a non-profit organization that works to help families with cerebral palsy members as well as other disorders. Founded in 1949, they pioneered the idea of using fundraising telethons as a means of support. The Cerebral Palsy Foundation (CPF) is another group that not only supports people, but they do it in a different fashion by partnering with schools and the media. Reaching for the Stars is focused heavily on the science behind CP and working on ways to someday formulate a cure. 

There are also organizations that are determined to ensure adequate rights for those who suffer from disabilities. The American Association of Intellectual and Developmental Disabilities (AAIDD) was founded in 1876. Their main goals are to broaden the ability of businesses to work with individuals who have intellectual and developmental disabilities and to promote and encourage the development of a society that can fully embrace people with intellectual and developmental disabilities.

In addition to these support groups, there are numerous others that assist with the neonatal and maternal sector. March of Dimes was founded by President Franklin D. Roosevelt in 1938. The original aim was to combat polio and it was called the National Foundation for Infantile Paralysis. Since funding Jonas Salk’s life-saving polio vaccine, they have steered their focus towards preterm birth-related diseases, as well as other childhood illnesses.

Finding the Right Charity for You

There are many people who want to make a difference in the world, even if it’s in a small way. There are 1.6 million non-profit organizations in the United States at the moment, and they support causes ranging from wildlife and nature preservation to battling hunger and homelessness. For every cause you could possibly care about, there is a charity to match. The problem lies in choosing which ones are legitimate and which ones will benefit your chosen issue the most.

It is very easy in today’s world to set up a GoFundMe page or a website that purports to serve various causes. The problem with the internet is the anonymity and lack of accountability that thrives in such an unregulated environment. You might see a charity that calls itself humane league without having any actual connection to the actual animal rights advocacy group, the Humane League

There are many online databases that have done a lot of this research. They examine the financial health of the businesses and their commitment to both transparency and accountability. Some examples of these websites are guidestar.org, charitywatch.org, givewell.org, and charitynavigator.org. They do the heavy lifting when it comes to exploring tax filings and present their data in a straightforward, unbiased way.

Another great tool is word of mouth. Many people have spent years volunteering their time and donating money to various causes, rewarded by a great feeling of satisfaction that comes femur helping others. You can also look to your employer or university to see if they favor a particular cause. Chances are that they are not investing in any type of unseemly organization. 

A great way to support a charity is by volunteering. Administrative costs can add up, so searching a website like volunteermatch.org is a great way to see how your time can be of use. By typing in your location, you can see where you can be of service. The website also lets you narrow down availability based on your interests. If you have a particular skill that can be of use, there is another website called catchafire.org. This space provides a way to match your skills with organizations that would greatly appreciate the pro bono work of an expert.

Cerebral Palsy and Bad Teachers

Any parent of a child with a disability will tell you that teachers are either saving graces without whom nothing would be possible, or a parent’s worst nightmare who fails to adapt to the needs of teaching a child who is differently abled.

pexels-photo-256468

A few weeks ago, a particular case went viral. Rosa Johnson is a student with severe cerebral palsy that leaves her little control of her body. Rosa’s mother Doreen had sent her to a school for students with special needs near their home in Ann Arbor, MI, where Doreen believed her daughter would be getting the best care available. However, in early November 2017, Doreen received a message from her daughter’s teacher that read “She won’t be quiet!!!!” accompanied by an image of Rosa’s mouth taped shut with blue painter’s tape. Doreen immediately looked for legal counsel and soon learned that Rosa had also been subject to other instances of abuse and neglect, including having been locked in a closet and having been slapped by a school bus driver.

As far as the US has come in our care of the physically and cognitively disabled, there are still lots of areas for improvement, and some cases continue to fall through the cracks. Lucky, the advent of the smartphone has made it easier for classmates and other adults to capture evidence of abuse, but that in and of itself won’t fix the problem. In the event that you or a loved one finds yourself in a situation where you have to investigate the way an adult or superior is treating a subordinate or student with special needs inappropriately, there are a couple of best practices you can follow.

Firstly, as Doreen did, immediately seek legal counsel. For a case as egregious as Doreen and Rosa’s, lawyers are likely to take it on pro-bono and help you find restorative justice and ensure that all liable parties are held accountable for their actions and missteps.

You can also start to collect “evidence” that may prove useful in establishing a pattern of abuse and neglect. Anyone who has spent time watching Law and Order will well know the importance of having documentation, pictures, doctors’ reports, etc., that provide concrete proof that something was amiss in the school. As tedious and uncomfortable as it may be, go back through your emails, texts, smartphone pictures, and conversations with friends.

Even if you can’t win in state or federal court, you can often win in the court of public opinion. With the blessing of your legal counsel, you can write about what happened and publish it on social media, on your blog, or try to get your story to run in a newspaper or magazine. Perhaps others will come forward with similar stories and you can spare another family the heartache and trouble that you’ve had to endure. 

Ways to Support Breast Cancer Awareness in October

Alan Rasof Breast Cancer AwarenessWays to Support Breast Cancer Awareness in October

Every year, the US and other nations commemorate those suffering from, recovering from, and living cured of breast cancer throughout the month of October. Individual people and companies will wear pink to show their support for those with the disease and to raise money for research and treatments for patients. From Yoplait to the National Football League, products and people sport pink for breast cancer awareness and fundraising. If you want to personally support the people suffering from the disease or the families of the patients, here are some ways you can get involved.

Donate directly to a local hospital: A number of exposes have criticized such organizations as Susan G. Komen for spending less than 10% of the money they raise on the patients, victims, and their families. The rest of the money gets tied up in overhead, pink products, and ad campaigns. If you want to ensure that your money goes directly to the people in need, their medications, and their families, talk with your local hospital or oncological clinic and send money to them rather than to a third-party fundraising organization. You can also browse sites like GoFundMe and donate to individuals who are raising money for treatments, travel, and reconstructive surgery.

Talk about detection: Where it’s appropriate and where you’re among trusted friends, have a conversation about self-checks and proper preventative maintenance. In the vast majority of cases, breast cancer is highly treatable when it’s caught early, but catching it early is the trick. People with breasts should be on the lookout the twelve signs of breast cancer, as outlined in this handy infographic from Know Your Lemons.12+signs+of+breast+cancer+using+lemons

Help your family live healthfully: For breast tissue in particular, there are some common practices and behaviors of Americans that directly cause breast cells to function improperly and wreak havoc on the human breast. For example, certain soaps and shampoos that include parabens, which are known to disrupt breast cell reproduction. Similarly, evolutionarily, humans didn’t produce their own hormones for a long time, so breasts are to this day very receptive to any chemical that even mimics estrogen. Unluckily for us, though, plastic is similar enough that breasts absorb plastic molecules, which are well known to cause cancer once allowed into the body. Avoid microwaving in plastic or interacting with much heated plastic, including Keurig cups.

Cerebral Palsy at Prom

Alan Rasof CP PromsIt’s prom season for high schools across the United States. Pictures of teens in elegant ball gowns and expensive tuxedos posing with flowers and limousines are flooding news websites and social media streams. Sprinkled among the smiles and sequins, though, is the occasional story about the selfless teens who benevolently decided to take a student with a disability as their prom date.

It’s been a long time since I’ve had to worry about prom, but my grandson Elijah is a toddler now and prom is still in his future. As glad as I am to see so many able-bodied teens taking teens with disabilities to prom, I don’t want this to be newsworthy. Teens with disabilities aren’t novelties, and befriending one shouldn’t be novel and newsworthy.

People with disabilities don’t exist for the rest of us to feel inspired. In a poignant TED talk, Stella Young, a journalist who uses a power chair for mobility, told the audience that she doesn’t need anyone’s help or sympathy, and she certainly doesn’t want to be held up as a model citizen for able-bodied people to think to themselves, “wow, if she can do what she does, so can I.”

Students with Cerebral Palsy especially don’t want to be looked on pitifully or as pets. Many are active members of their communities, participating in events and making friends as their conditions allow. Several people with CP have taken to blogging and vlogging to normalize and humanize their disabilities but also illuminate how difficult it is to navigate a world designed for able-bodied individuals.
As Elijah grows up, I don’t want one of his classmates to take him to prom out of pity or as a grand gesture of selflessness and altruism. Elijah has a wonderful personality. He loves to play and laugh and interact with people. When he grows up, I want someone to take him to prom because they’re friends, not because it’s a kind gesture. I’m sure he’ll be giddy to pick out flowers and bowties, and I can already picture his face lighting up when the DJ plays his favorite song. I don’t ever want to see him as a prop or the object of charity, especially at his prom.

Sports Illustrated Honors Teen Who Led Cerebral Palsy Walks

In my last blog post, I wrote about the inspiring and heart-warming story of Hunter Gandee, a teen hero who has brought tons of attention and awareness to Cerebral Palsy, a disease that affects his younger brother, Braden Grandee.

On Monday, Sports Illustrated announced its annual list of accolades. Earning the first High School Athlete of the Year award was the 15-year-old high school sophomore, Hunter Gandee.

“What an honor! I’m truly blessed!” Hunter tweeted Monday afternoon.

Hunter was 14 and Braden was 7 when the brothers first walked 40 miles together to raise money for a handicap-accessible playground at Braden’s elementary school, as well as increased understanding of cerebral palsy — a brain injury that affects movement, posture and muscle coordination.

Throughout the entire June 2014 walk, Hunter carried his brother on his back. One year later, the duo was back at it — this time walking 57 miles. The second “Cerebral Palsy Swagger” event was a step up challenge-wise, but the goal was the same.

“One thing I wanted to show through this walk is the power of the youth in our society,” Hunter says. “We saw a problem, we had an idea to create a solution, and the only difference from us and a lot of other kids is that we went out and tried it.”

Since completing the walks, the brothers have received attention from national media organizations, hoping to share their story. Hunter has received countless awards for his strength and determination, including most recently the Sports Illustrated accolade.

Hunter’s story will be featured in the Sports Illustrated magazine issue that hits the stands Dec. 21. He has also been invited to an awards dinner in New York to honor the athletes featured in the magazine, including cover athlete and tennis legend Serena Williams.

Here is a 10 minute video I found that shows the beautiful relationship between these two brothers. Enjoy:

 

Community Rallies Together To Build Accessible Playground For A Student With Cerebral Palsy

hunterandbraden

Douglas Road Elementary in Bedford township has a brand new playground, inspired by Braden Gandee, 9, who has Cerebral Palsy.

NBC News first introduced the Gandee brothers’ story in June 2014 when the pair set off — with Hunter carrying Braden on his back — from their home in Temperance, Michigan, and walked forty miles to the University of Michigan’s Ann Arbor campus to raise awareness about cerebral palsy. Along the journey, people cheered them on.

The story of Braden and his brother Hunter made national news with what they called the “CP Swagger.”

All that attention brought generous donations from individuals across the country, including from teams of engineers who offered to build a new playground for the community, accessible to people suffering from disabilities.

Inclusive+Playground1

Braden Gandee always had a simple dream: to play at recess alongside his classmates.

“I just had to sit back and watch them [friends] have fun,” said Braden “I really wanted to do what they did.”

With the help of dozens of volunteers, including his big brother, Braden and all his classmates can now play together.

“Before at recess, Braden was only able to do a few things: ride his power chair around the blacktop or use his walker,” Hunter Gandee, Braden’s brother said. “He had one handicap accessible swing.”

But now the possibilities seem endless.

“It’s just a good feeling,” Braden said. “Now I can go out and play with my friends.”

Kids with all different abilities can set sail on the new pirate themed, inclusive playground set.

“What’s really cool about it, is that Braden is going to be able to play with his friends,” Hunter told NBC. “It’s got special equipment he can use with his friends and he’s going to have so much fun.”

“3 weeks ago it was a dirt pile and an empty field,” Donnie Stevens, the president of the Parent Teacher Association at Douglas Road Elementary said.

The playground idea started some 18 months ago. The PTA spearheaded the fundraising after being inspired by the Gandee’s.

“The moment it became reality is when you see Hunter walking with Braden down that long hallway,” Stevens said.

He says the community really rallied around the effort, donating time and money to make it all possible.

“Piece by piece we got to where we’re at now,” he said.

The Gandee’s hope this will encourage other school districts and neighborhoods and most importantly educate people about Cerebral Palsy.

Watch this video to learn more about this inspiring story:

To read more about this story, click here

 

High School Students Use Their Engineering Club To Help A Fellow Classmate With Cerebral Palsy

A group of high school students in Green Township, Ohio, created a project for themselves that would help a fellow classmate, Jerry Potavin. Jerry is a student living with cerebral palsy.

Alan Rasof

Members of the Oak Hills engineering club designed and built a table to help classmate Jerry Potavin.

What started out as just another project for the engineering team at Oak Hills High School turned out to be much more then that for classmate, Jerry Potavin. Jerry is sitting easier now thanks to the selflessness of his peers at Oak Hills.

“I have always loved helping people, it’s just what I like to do,” says Oak Hills, senior, Dylan Noble. Dylan along with 5 other engineering students were contacted by their high schools engineering teacher to build something that would make Jerry a little more comfortable. “Once we finally delivered it to him, it was exactly what they wanted” says Dylan.

Alan RasofJerry has to spend a lot of time in his wheelchair every day and because of this he needs to spend a certain amount of time a day stretched out on a flat mat. Dylan and the engineering club built a table that would make it easier for Jerry to move around.

Laura Velasquez, one of Jerry’s teachers at Oak Hills said that when they brought the table down to show Jerry, their faces were lit up with joy and excitement. Their faces were just glowing, you could feel the overwhelming positive energy that they had, said Velasquez.

Velasquez said that the table has already made a difference for Jerry. “It makes him feel a lot more included, so that’s really wonderful,” she said.

Dylan Noble, along with the rest of his engineering team, have set such a great example for their peers. They have found a way to combine the skill sets that they have learned in engineering class with giving back to their community to most importantly, help a friend.

To read more about Jerry and his classmates, or to watch a video on this story, click here.

 

Types of Cerebral Palsy

Alan T. RasofTypes of Cerebral Palsy are classified by which areas of the brain are affected and therefore which movement disorders occur. The following movement disorders are the most common to those affected by CP: stiff muscles (spasticity), uncontrollable movements (dyskinesia), and poor balance and coordination (ataxia). There are four main types of Cerebral Palsy categorized by these various movement disorders.

The first type of CP, and the most common, is called spastic Cerebral Palsy, which affects 80% of those diagnosed with CP. According to the CDC, “People with spastic CP have increased muscle tone. This means their muscles are stiff and, as a result, their movement can be awkward. Spastic CP is usually described by what parts of the body are affected,” (Cdc.gov). Spastic diplegia/diparesis, spastic hemiplegia/hemiparesis, and spastic quadriplegia/quadriparesis are all categorized under Spastic Cerebral Palsy.

Spastic diplegia predominantly occurs in the legs and most who are diagnosed under this category have normal movement and range in their arms. Many people who have spastic diplegia have trouble walking because their leg and hip muscles are extremely tight; and often times their will turn inward and cross at the knees. Spastic hemiplegia, on the other hand, affects only one side of a person’s body and the arm tends to be affected more heavily than the leg. Spastic quadriplegia affects all four limbs, the trunk, and the face of a person – it is the most severe form of spastic SP. Most people who have spastic quadriplegia cannot walk at all and have developmental disabilities, difficulty with their vision, and seizures.

Dyskinetic Cerebral Palsy is the second type of CP. Those who have dyskinetic CP have difficulty controlling movement of their legs, feet, arms, and hands, which results in having trouble walking and sitting down. According to the CDC, “Sometimes the face and tongue are affected and the person has a hard time sucking, swallowing, and talking. A person with dyskinetic CP has muscle tone that can change (varying from too tight to too loose),” (Cdc.gov).Alan T. Rasof

The third type of Cerebral Palsy is ataxic, which correlates with balance and coordination. Those diagnosed with this type of CP usually have a hard time with quick movements, or movements that require stability. Walking can be be unsteady and they may have trouble controlling their hands if they are reaching for an object.

Last, mixed Cerebral Palsy is the fourth type of CP, and happens to those who are affected by more than one type of CP. Most commonly, spastic-dyskinetic CP occurs as a mix, resulting in an individual’s increased muscle tone and difficulty controlling movement in their hands, arms, feet, and legs.

It is important that we are all aware of these different types of Cerebral Palsy so that research can be conducted to help ease pain and aid in controlling muscle movements on an individual scale. Each human being is affected differently by their CP, and the more we can understand as a society, the more help we can offer.