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.

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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.

How to Support an Abused Loved One

Domestic abuse is many people’s worst fear. But how do you help a loved one who is being abused? You might not live with them or see them often, but there are still many ways you can support them.

 

Listen to Them

Often, survivors of domestic violence go unheard. They may subtly hint that they are being abused, or that their relationship is impacting them negatively. It is never right to assume one way or another, but you can listen and ask the right questions. Directly asking “Are you being abused?” may not solicit an accurate response, so be careful with your wording. Avoid accusations, and instead focus on your loved one.

 

Give Guidance if Asked

This is a difficult step, because many victims of abuse will not admit they are being abused. However, if a friend or family member asks you for advice, offer them words of encouragement and let them know that they deserve to be treated respectfully. Again, focus less on accusing the abuser, as this may push your loved one away. Also, allow the victim to make their own decisions. Abusers often control their victims, so empowering them will give them hope.

 

Offer a Place to Stay

This may not be feasible for everyone, but if you have space for your loved one, offer to let them stay with you until they get back on their feet. Many victims suffer from financial abuse, where the abuser controls all of their money. They may not have a way to leave on their own, so offering a helping hand is a great way to show your support.

 

Share Resources

There are hundreds of resources for victims of domestic abuse, such as the National Domestic Violence Hotline. Make sure your loved one is aware of the resources available to them. Also suggest going to therapy, and offer to help find a therapist that specializes in domestic abuse. Your loved one may not be ready to talk about their trauma, so respect their decision either way. They may also be more comfortable if you accompany them to their first few sessions, and this is a suggestion you may also make.

 

Educate Yourself

Education about domestic violence is the best way to empathize with your loved one. There are plenty of resources about why victims stay with abusers and many other important topics. Reading current research from psychological professionals and stories from survivors can help broaden your knowledge. Ultimately, it is your responsibility to educate yourself about domestic abuse, not your loved one’s.

 

Love Them

This is simple. Show your love and support in as many ways as you can. Do what makes your loved one comfortable. If you’ve known them for years, you likely know some of their favorite things – the movies, foods, and activities that make them feel at home. You don’t have to spend every penny on them, but the little things can add up. Let your loved one know how much they mean to you.

 

If you suspect a loved one is being abused, you can contact the National Domestic Violence Hotline online or by phone at 1-800-799-7233.

 

Isabell Agumbah is a strong advocate against domestic violence. To find out more about domestic abuse, visit her website.

Concert Going with Disabilities

Alan Rasof Concert Going with DisabilitiesFor lots of excited fans, summertime means music festivals and concerts with their favorite artists. This usually entails a good amount of wandering about a venue for food, singing along with the best songs, and more. Individuals with disabilities, believe it or not, also enjoy going to shows and concerts, but often their experience is a little different from attendees who are able-bodied.

Depending on the mobility of the individual, physically getting to the location and finding a seat can be a challenge in and of itself. Often, concert goers who use a wheelchair or power chair to navigate have to jump through lots of hoops to ensure that their seats are wheelchair accessible. Few if any ticket sale websites can “check” to ensure that the person purchasing a wheelchair accessible seat actually needs the accessibility.

Additionally, ticket sales websites like TicketFly and Ticketmaster may not communicate with the actual concert venue with any frequency, so for people in need of accessible seating, finding the right person can be a nightmare. One unfortunate soul spent a month being bounced from the ticket sales company to the venue and back and forth again before finally procuring accessible seating her her and her boyfriend with cerebral palsy.

Other disabilities can impact the concert going experience, too. Recently, one woman’s video went viral on social media after a concert goer recorded her translating an entire Snoop Dogg concert into sign language in front of a large crowd of fans. Those who are hard of hearing or live with significant hearing loss still enjoy the experience of attending concerts and seeing their favorite performers live among others who admire the artist. However, for them to fully enjoy the experience, some need friends or professionals to translate the performance into sign language for them to understand.

Holly Maniatty has been signing rap shows and festivals for sixteen years and has translated the work of such artists as Jay-Z, Eminem, and the Wu Tang Clan. Professionally, Maniatty is an independent contractor hired by the disability department of a festival or concert. To prepare, Maniatty and her team spend weeks studying the lyrics and meter of the songs so that they can sign not only the literal translations to the dense lyrics, but also provide the appropriate body language to accompany them.

People with disabilities have favorite artists just like able-bodied people and enjoy being in the company of others who enjoy the performers. Although their experience is a little different, they love the rush of the crowd and the acceptance they find in music.

Food: an Escape from Disability

foodFor many young people living with Cerebral Palsy, a distant goal is independence. As we all know, CP varies in severity and expression depending on the severity of the brain damage that the individual sustained. For some, their minds are perfectly in tact but their nervous systems and muscles suffer from abnormalities of form and function. For others, though, the condition can leave them nearly incapable of ever living life independently.

One common path to independence, though? Food. For many who live with CP, the food industry provides a welcome road to a more independent lifestyle, complete with repetitive tasks, support from business owners, interactions with customers, and wages. Some large-scale operations like Whole Foods and Giant have already made commitments to hiring more individuals with disabilities and providing them with the attention and training they need to be successful. In Pennsylvania, Leg Up Farmers Market trains and employs adults with disabilities and walks them through the entire process, from farming the food to marketing and selling it to customers.

On a smaller scale, though, small businesses have a greater ability to provide those with disabilities a personalized working experience that is mutually beneficial. Whereas larger stores and restaurants entertain more customers and thus may not have time to nurture an employee with special needs, small stores, local cafes, and other good-hearted small business owners can employ individuals who may need some extra time and attention.

Take, for example, Victoria Reedy of Schenectady, N.Y. NPR recently ran a story about a young woman who lives with Panhypopituitarism, a disease that drastically limits growth hormone production and can also cause some other physical, mental, and cognitive inhibitions. Reedy struggled in school with both the content and the motor skills required to perform, but as a 26-year-old woman, she’s found new life working in Puzzles Bakery & Cafe, where she participates in the food service work and enjoys some tasks like washing dishes and

In another example, one young man with CP turned his dietary restrictions into a platform for his passion as a food critic. Alex Jenkins of Charlotte, North Carolina, lives with Cerebral Palsy, and as a result, has some pretty intense dietary restrictions. In addition, Alex experiences some limited mobility and reduced fine motor skills, so he often asks his waiters to cut his food for him. Writing under the pseudonym The Dude, Alex pens reviews of the restaurants that includes discussions of their accessibility to individuals with handicaps and their ability to accommodate him. With his mother and his caregiver, Alex regularly visits restaurants, and afterwards, he and his mother draft and post reviews on his blog, Food with the Dude. In this way, Alex has harnessed his disability into a positive, informative outlet.
For many with disabilities, food is an open door to freedom and mobility. It’s a common ground, a learning space, and a way for these individuals to earn a small income.

Representation of Cerebral Palsy in Media

RepresentationAs of late, the importance of representation in the media has been a popular rallying cry for minorities of all types. Women call on the Bechdel test to determine the level of female representation in movies and TV shows. Last year, the hashtag #OscarsSoWhite drew attention to the dearth of people of color eligible to win the prestigious acting award.

Calling for better minority representation has also extended to those with disabilities. TV shows like Degrassi and Glee have depicted young people with physical handicaps who participate in everyday life with friends who care about them, include them, and are sensitive to their limitations. Arab comedian Maysoon Zayid has performed all over the globe doing stand-up related to her life with cerebral palsy. In her TED talk, she described how she auditioned for the role of a person with cerebral palsy but was turned down in favor of an able-bodied actor. When she asked why she wasn’t chosen, the casting director told her they were worried she wouldn’t be able to perform some of the actions for which the script called. This baffled her — if she, a woman with cerebral palsy, couldn’t perform the actions of the script, maybe the script didn’t accurately portray life with cerebral palsy.

Some children’s authors and illustrators have decided to take the battle for representation upon themselves and pen books about children with special needs and disabilities to help young people learn the facts about handicaps and normalize the idea of having friends and peers who look and behave differently. Especially for cerebral palsy, which can vary in severity and symptoms, representation in children’s literature can help able-bodied children recognize and normalize the appearance of the disability in their fellow classmates.

Shaila Abdullah wrote a book in 2014 called My Friend Suhana: A Story of Friendship and Cerebral Palsy to help children understand how to be a good friend to someone living with CP. In the book, an able-bodied narrator Aanyah shows how she loves and cares for her nonverbal best friend Suhana, who lives with CP, and how Suhana has just as many abilities as disabilities. The author and her 10-year-old daughter (on whom the narrator is based) volunteer weekly at a center for children with special needs, so the two of them wanted to demonstrate in a book that love and friendship transcends disability. This heartwarming books is a must-read for any child to help foster compassion and understanding.

Aaron Philip also wrote an autobiographical story called This Kid Can Fly: It’s about Ability (NOT Disability about his own life with Cerebral Palsy. A 14-year-old African American native of the Bronx, Aaron is a disability activist and advocate for helping the general public understand the reality of living with CP and how to help others with the condition. His memoir, written with the help of Tonya Bolden, delineates his life story and how he has embraced his different life.

By including books with a healthy representation of children with disabilities in schools, libraries, and homes, we can help normalize CP and make children more open and compassionate.  

A Different “Quality Time”

A Different -Quality Time- Alan Rasof

When faced with the inevitable rocky patches of life, most couples are given the same time-tested advice: “Spend some quality time together.” Nothing at all is wrong with this; escaping for a nice hike in the woods or a cultural excursion can bring you closer as you are reminded of what brought you together in the first place.

But what about going against the grain? Sometimes the challenges that life throws at us are not so easily cured by your typical “quality time” movie date on the couch. Perhaps you’re going through something and your mind feels restless. What would it look like if you and your spouse actively worked against expectations of “quality” time? Instead of going on a trip that’s relaxing, what if you were to take up a challenge that’s taxing? Often times finding a distraction that you can participate in actively and together, is just the kind of cure you need to take your mind off the troubles of day to day life.

Few things can bring us together like the bonds formed during the journey towards a common goal or solution. So next time you want to spend some quality time, make the conscious decision to take the road less traveled. Sure, it may be harder, but coming out on the other side will leave the bond between you stronger than ever. Also, doing so is not something that can usually be completed in a single afternoon or a long weekend. No, these challenges weigh on you, force you to come up with creative solutions, and— most importantly— cause you to rely on your greatest love as a pillar of strength.

Maybe you need to get into shape. Try making quality time a joint exercise session, or time together in the kitchen trying out a new healthy recipe? If you’re battling certain vices, maybe your journey would include opening up to your spouse and starting a journey towards getting the help you need. And, all things permitting, if there is a problem at work that needs solving, why not get their opinion on it?

Remember, marriage is a partnership. So saddle up and help one another ride on to catch your dreams. The road may be tough, but the destination will be sweeter than that of any single vacation.

Common Forms of Cerebral Palsy

Common Forms of Cerebral Palsy

Cerebral Palsy is an umbrella term covering a group of non-progressive and non-contagious motor conditions that cause physical disability in human development, mostly in the various area of body movement. Signs and symptoms of cerebral palsy usually show in the first year of life, sometimes even before birth.

The medical community has identified 3 types of cerebral palsy (however some people may have symptoms associated with different types, a condition known as mixed cerebral palsy.)

Spastic Cerebral Palsy

Spastic cerebral palsy causes great tension in the muscles. Normally, muscle groups work in pairs. When one pair tightens, the opposite pair relaxes. Interruptions in messages between the brain, nerves and muscles cause difficulty with movements.

Ataxic Cerebral Palsy

Children with ataxic cerebral palsy usually walk with their feet far apart. They find it hard to move quickly or precisely. They have trouble writing or buttoning their clothes. Ataxic cerebral palsy also causes something called intention tremor. If a child with this symptom reaches for a book, his hand and arm start to quiver. The movement grows worse as he gets closer to the shelf.

Athetoid Cerebral Palsy

Children with athetoid cerebral palsy have problems controlling the movement of their hands, arms, feet and legs. It can be hard to sit or walk. Their movements may be slow and writhing or rapid and jerky. If the face and tongue are affected, the person has a hard time sucking, swallowing and talking. Muscle tone can change from too tight to too loose.

Things to Know about Cerebral Palsy

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Cerebral palsy (CP) is the most common motor disability in childhood, and children with CP and their families need support.

Learn more about CP and what signs to look for in young children:

  1. Cerebral palsy (CP) is a group of disorders that affect a person’s ability to move and maintain balance and posture.
  2. CP is the most common motor disability of childhood. About 1 in 323 children have been identified with CP according to estimates from CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network.
  3. CP is more common among boys than girls, and more common among black children than among white children.
  4. Most (about 77%) children with CP have spastic CP. This means that their muscles are stiff, and as a result, their movements can be awkward.
  5. Over half (about 58%) of children with CP can walk independently.

Most CP is related to brain damage that happened before or during birth and is called congenital CP. Some of the factors that increase the risk for congenital CP are:

cerebral-palsy-11-things_a250pxEarly Signs of Cerebral Palsy

From birth to 5 years of age, a child should reach movement goals―also known as milestones―such as rolling over, sitting up, standing, and walking. A delay in reaching these movement milestones could be a sign of CP. The following are some other signs of possible CP. It is important to note that some children without CP also might have some of these signs.

In a baby 3 to 6 months of age:

  • Head falls back when picked up while lying on back
  • Feels stiff
  • Feels floppy
  • Seems to overextend back and neck when cradled in someone’s arms
  • Legs get stiff and cross or scissor when picked up


In a baby older than 6 months of age:

  • Doesn’t roll over in either direction
  • Cannot bring hands together
  • Has difficulty bringing hands to mouth
  • Reaches out with only one hand while keeping the other fisted

In a baby older than 10 months of age:

  • Crawls in a lopsided manner, pushing off with one hand and leg while dragging the opposite hand and leg
  • Scoots around on buttocks or hops on knees, but does not crawl on all fours

Resources:

http://kidshealth.org/en/parents/cerebral-palsy.html

http://www.cerebralpalsy.org/about-cerebral-palsy/

Three People With Cerebral Palsy Who Are Changing The Game

Cerebral Palsy is a neurological disorder that currently is currently affecting 764,000 people in the world today. Each year, about 8,000 to 10,000 babies and infants get diagnosed with this disorder according to cerebralpalsy.org.

Cerebral Palsy occurs as a result of a brain injury or malformation that occurs during a child’s development. The result is typically physical impairment. While many people with cerebral palsy are physically impaired, the way this symptom shows up is different for each person. There is a difference in the type of movement dysfunction, the location and number of limbs involved, and the extent to which the person is impaired from person to person.

Cerebral palsy is permanent and incurable, therefore those with cerebral palsy live with it for their entire lives. While many able-bodied people would think of this as something that stops people with cerebral palsy from doing what everyone else can, this is far from true. There pioneers are showing the world that cerebral palsy doesn’t have to stop anyone from reaching success.

  1. Bonner Paddock, the world’s first ironman with cerebral palsy

Bonner Paddock completed the 2012 Ironman Triathlon in Kona, Hawaii, making him the first person with cerebral palsy to complete the race. He was also the first person with cerebral palsy to climb Mount Kilimanjaro. Paddock was very active as a child, playing competitive soccer and baseball. His CP was mild, though he would drag his feet and often lose his balance. He was not correctly diagnosed until the age of 11.

Paddock did not talk about his disability publicly until he was 30 years old. He went on to run a number of marathons in addition to the Ironman Triathlon. He also founded the One Man, One Mission Foundation, a nonprofit that raises money to build early-learning centers for children with disabilities.

2. Maysoon Zayid, comedian and inspirational speaker

Maysoon Zayid is a comedian, writer and actress who works hard to spread the word that cerebral palsy doesn’t have to hold you back. After experiencing obstacles in the acting world due to lack of representation of people of her race and with her disability, Maysoon became a comedian and is now making millions of people laugh. She has worked with many soap opera stars as well as Adam Sandler and Dave Matthews. Maysoon also founded Maysoon’s Kids, a charity that works to help Palestinian refugee children. She is also the co-founder of the New York Arab-American Comedy Festival.

3. Ollie Nugent, UK football player

Ollie Nugent is one of the most talented players within the world of Cerebral Palsy UK football. Nugent suffered a stroke when he was born, thus leading to cerebral palsy. Despite what his parents were told to expect, Nugent walked at only 10 months. He later began kicking a ball and the rest is history. He began playing at Tranmere Rovers at the age of eight.

Nugent’s cerebral palsy affects his eyesight (mainly peripheral) and his right side. He has adapted to this over the years. After years of determination, Ollie Nugent wants to become the first player with cerebral palsy to go professional. Nugent is working hard to show the world that cerebral palsy cannot stop him from reaching his goals.

Cerebral palsy may last a lifetime, but that doesn’t mean it has to hold people back. These icons are paving the world for people who live with cerebral palsy to show them that anything is possible.