The CP Blog


Laura’s Tribute to Brian, Her Son

Posted in TheCPBlog® Inspiration by Denise on July 13, 2013 • Read Comments: (1)

Love Without Barriers

Years later, a child’s life brings warm memories

A Mother’s tribute to her son

Although the majority of children with cerebral palsy will live long, healthy lives, for some – like Brian McDonald, 21 – life is unfairly shortened. Most would agree, parents shouldn’t lose their child so early. Laura McDonald, Brian’s mother, reaches out – in her own words – to other families who have recently lost their child. While doing so, Laura pays tribute to the son who so beautifully shared his bright light.

“Some may ask, what was the purpose to his life?” she wrote. “Why did he have to be so challenged? What value did he have?” To which she responds that the people that knew Brian, know the answer. “He was physically flawed, but spiritually flawless,” she said. “We took the time to experience his grace, and through all the trials and tribulations we know that we have been living in the presence of an angel.”

To read Laura’s full tribute, visit Laura McDonald’s Tribute to Brian, Her Son

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Researchers link preeclampsia as a risk factor for cerebral palsy

Posted in TheCPBlog® News by Denise on July 12, 2013 • Leave a comment! (0)

In the News

Researchers from the Norwegian University of Science and Technology are urging doctors to be on high alert for early signs of a smaller-than-average baby developing in a mother with preeclampsia, a condition characterized by high blood pressure and protein in the urine. They discovered that children born smaller than usual that were also moderately preterm – between 32 to36 weeks – or very preterm – less than 31 weeks – to a mother who experienced preeclampsia are at significantly increased risk, 20 fold, of being diagnosed with cerebral palsy.

Among full-term babies, those born at normal size to a woman with preeclampsia didn’t appear to be at increased risk, while those born small for gestational age to a woman with preeclampsia were at an increased risk, 3 fold, says the study published July 9, 2013 in BMJ. Preeclampsia is a medical condition that presents with high blood pressure and significant amounts of protein in the urine of pregnant women. For the study researchers studied 849 singleton babies with cerebral palsy and 616,658 singleton children without, who survived the neonatal period during 1996 to 2006.

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Bring an inclusive park to a neighborhood near you

Posted in TheCPBlog® Product and Services by Denise on June 12, 2013 • Leave a comment! (0)

inclusive park

Across America – 23 years after the enactment of the Americans with Disabilities Act in 1990 – a person doesn’t have to be of a particular race, sex, age, religious affiliation, or socio-economic status in order to play in a park, they just have to be … able-bodied.

What?

Since the approval of the ADA, the concept of universal design standards has greatly evolved. However, the majority of neighborhood parks are not inclusive for all, namely those with disabilities.

The outdoor playscape is an important setting for development and age-appropriate activities; for physical, cognitive, emotional, social and sensory growth. Perhaps more apparent, it’s just plain fun. Playgrounds allow children to play with and alongside others, run and jump, climb and swing, leap and crawl, yell and whisper, and conquer and reign.

All one has to do is view a child in a wheelchair that is sitting off to the sidelines watching other children play to realize the true cost of outdated technology. Likewise, experiencing children of all abilities playing together, without inhibition or a care in the world, allows us to understand the magnitude of opportunity that abounds.

There is much society can learn from innocent children playing in inclusive parks.

Not convinced? Take a moment to watch a beautiful video that explains the concept born from the memory of little Shane Alexander Williams whose legacy lives on in the laughter of the children blessed to play in the special playgrounds. The mission is rather simple – to unite children of all abilities. It is possible.

Some claim there is added expense in creating universally designed parks; while others argue there is a larger cost to society – and to children both with and without disabilities – that can no longer be tolerated. The cost of updating a whole playscape has economy of scale, especially when the cost to society of not having inclusive playgrounds is factored in. Beautiful parks attract residents and businesses, and enhances property values. They fight bight, crime and juvenile delinquency.

Universally designed parks shouldn’t be a chore, an aberration, an after-thought, or an item on a wish list – it should be a reality.

Bringing an inclusive park to a nearby neighborhood could be as easy as a few well-placed phone calls. MyChildTM has identified 10 action steps to jumpstart interest in a universally designed playground, visit and Call MyChild’s call center at to request Kit No. 910 – Inclusive Playground Information Packet.

The term “play” often conjures up ideas that the time spent in its pursuit is not important, when in fact, meaningful play time in or outside a park is immensely beneficial to every child. It sets a foundation for health, fitness and well-being. Park play is a seminal part of the experience of being a child that should be available to all children, universally. By, developing children in an inclusive environment, they grow into adults filled with compassion, understanding and acceptance.

Is there a down side? Better yet, is there a down slide?

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Love Without Barriers

Posted in TheCPBlog® Inspiration by Denise on February 12, 2013 • Read Comments: (2)

Love Without Barriers

Finding love, starting families and living happily ever after

It’s that time of the year again; the one where the lovers and the lovelorn either celebrate their passion and respect for one another, or resolve that by February of next year, they’ll be with someone really special. But for too many people with disabilities, February 14 can be a time to focus on what one does not have. Many individuals with special needs – especially those that are young – wonder if wading into the dating pool is an option. For most teens, dating is a turning of the page; a large and transformative part of the transition from childhood to adulthood. For those with disabilities, traveling the path to love may seem like one bridge that is simply too far down the road.

Frankly, it’s easy to see why young people with special needs may be under that false impression. There are too few representations of disabled people living full, productive, happy lives in the media. In the real world, physical access is often still an obstacle that can make going out on a date seem difficult. And there’s always a nagging question of, “Is my disability simply too much for someone outside of my family to embrace?”
The good news is those with cerebral palsy seeking relationships not only date, they find love, start families, and live happily ever after.

MyChild at CerebralPalsy.org has compiled a list of tips to help with the dating process:

Tips for two

  1. Be leery of anyone asking about financial information
  2. Investigate physical access before a date, not after
  3. Make eye contact; don’t be shy
  4. Remember that being with someone is a choice
  5. Expecting to find love is practical in every way
  6. Be confident in what you can offer another
  7. Strive for improvement and shed negativity
  8. Envision your future, then strive for it
  9. Seek solutions to relationship obstacles
  10. Grow together and spend time apart

To learn more about Cupid’s bow, star-crossed lovers and tips for two, visit Love Without Barriers

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Race by Race: A Father’s Love Lifts His Son

Posted in TheCPBlog® Inspiration by Denise on December 14, 2012 • Read Comments: (1)

Rick and Dick Hoyt in Hawaii

When Dick Hoyt’s son Rick was diagnosed as a spastic quadriplegic with cerebral palsy, he was devastated. But when he and his wife, Judy, were told to place Rick in an institution, the devoted parents decided to give their son a life of uncommon opportunity, inclusion and, of course, athletics. This is Dick’s story.

A son’s relationship with his father is one that can leave an indelible mark on both parties, but there aren’t many fathers – or sons – that have the ability to leave that same mark on a community of people that, too often, have no voice.

It’s a role that Dick Hoyt could never have conceived of when in 1977 his namesake, 15-year-old Rick, asked if the pair could participate in a five-mile charity run to raise money for local track and lacrosse player Jimmy Banacos, paralyzed in an automobile accident.

The request, in and of itself, was a blessing as Rick’s form of cerebral palsy rendered him non-verbal and reliant on his wheelchair for mobility. For most of Rick’s first 15 years, Dick knew his son was intelligent, but struggled to find ways to communicate with him.

“A spastic wave of his arms, a nod of his head, or a glance in a specific direction were amongst the very limited weapons that Rick has in his communications arsenal,” said Todd Civin, co-author of Rick’s newly released book “One Letter at A Time.”

A computer they dubbed “The Hope Machine” put the wheels in motion, literally. Through the Hope Machine Rick made one of his first requests of his father—a charity run to support another with special needs.

“Rick really wanted to help the lacrosse player because he understood what he was going through,” he said. “And this was something he wanted to do with me, so I thought, why not push him in a wheelchair?”

At race completion, the phenomenon known as Team Hoyt was born. Father and son found a way to connect, bond and compete, together.

Fast forward 30 years

At the time Rick published his book “One Letter at a Time” earlier this year, Team Hoyt participated in 1,003 races, including 248 triathlons, 22 duathlons, 70 marathons (including 30 in their beloved Boston), 94 half marathons, 216 10-kilometer sprints, 157 5-milers, and 152 5-kilometer races, to name a few. Their tours include “The Trek Across America;” biking through Connecticut, Rhode Island, and Massachusetts for the “Axa World Ride ’95;” and a race from Pittsburgh to Washington D.C.

Dick, now 72, and Rick, 50, show no signs of stopping, and Dick’s dedication to his son is still a testament to the power of love.

A son’s relationship with his father is one that can leave an indelible mark on both parties, but there aren’t many fathers – or sons – that have the ability to leave that same mark on a community of people that, too often, have no voice.

Everyone says a child changes your life,” Dick said. “We knew that our son Rick was about to change our lives in ways we never could have predicted.”

This is Dick Hoyt’s story—Race by Race: A Father’s Love Lifts His Son. An amazing story!

Read Dick’s story

For Dick Hoyt: Part I – Race by Race, a Father’s Love Lifts Son
For Dick Hoyt: Part II – The Basics
For Dick Hoyt: Part III – Transcending Limits

Join the MyChild discussion of the Hoyt’s on Facebook,
CerebralPalsy.org on Facebook

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Josh Blue Takes “Cerebral” Out of “Cerebral Palsy”

Posted in TheCPBlog® Inspiration by Denise on November 30, 2012 • Read Comments: (1)

Josh Blue with Mouse

JOSH BLUE

Comedian, Cerebral Palsy is a Laughing Matter

Josh Blue’s quirky view on life, and cerebral palsy, helped him win top “Last Comic Standing” honors and a full-time career as a comic. But please, don’t call him an inspiration, he says.

“The word ‘inspiration’ is actually a swear-word for disabled people,” he said.

“You’ll run into situations where someone will tell you you’re an inspiration just for walking around out there. “What if I told them that I was on my way to the liquor store?” Josh jokes. “How inspirational would that be?”

Josh Blue incorporates his memories as a U.S. Paralympian Men’s Soccer Team competitor and his own life experiences in a humorous manner that brilliantly educates the audience on aspects of living with disability. “I just want to get people with disabilities into the limelight,” he said.

“Regarding having cerebral palsy, I know realistically that I can’t go up there on stage and ignore it,” Josh said. “But the feedback that I get after a minute or two has nothing to do with cerebral palsy.”

“A life of pursuing my dream and rocking the microphone every night, and receiving a standing ovation is not a bad way to live your life,” he said. “I wouldn’t have it any other way.”

“Even growing up I knew that more or less my condition is a really small issue in terms of the rest of the planet,” Josh said. “I’ve enjoyed food on my table and shelter for my entire life, and a lot of people don’t have those things. My cerebral palsy is a miniscule issue for most of the planet.”

Josh Blue, while waiting in an airport hanger, updates MyChild on his successful career and most recent insights. To learn more, visit Josh Blue – Comedian, Cerebral Palsy is a Laughing Matter

The Ultimate Blog for Everything Cerebral Palsy™

Business Owner’s Generosity Provides Relief for Boy with Cerebral Palsy

Posted in TheCPBlog® Inspiration by Denise on September 21, 2012 • Read Comments: (2)

David Scarbrough, 12, from Susanville, CA, has cerebral palsy. When his doctor prescribed an in-home hydrotherapy tub to relieve chronic pain, joint inflammation and rigidity David’s mother Ronette wondered how she was going to afford the tub without sufficient financing or health insurance. To date, they surpassed many obstacles including birth complications that threatened both their lives when David was born prematurely at 27 weeks weighing only 18 ounces.

In an effort to provide the care her son requires, Ronette turned to the power of the internet. She posted her plea on a fundraising website in hopes of soliciting donations from family, friends and strangers by telling David’s story.

Upon hearing of David’s dilemma, Mike Duffer, owner of Safe Step Walk-In Tub Company, rushed to assist. Duffer donated their top-of-the-line GentleJet Therapy tub and unit installation at no cost, stating “the opportunity to relieve some of the extreme pain the family suffers was payment in itself.”

Due to this generous donation, David and his family are able to release body tension and soothe aching muscles and joints by enjoying the calming, refreshing escape that the GentleJet Therapy tub provides. The 16 air bubble streams and 10 water jets are strategically designed to provide a relaxing and methodical massage to the entire body, or specific areas of the body (i.e, legs, feet, back…). The walk-in feature is designed to avoid bathroom and lifting injuries. The tub also features chromotherapy, aromatherapy and personal hygiene (bidet). Other features that assist those with special needs include anti-slip floor, built-in and wall-mount grab bars, anti-scald technology, No-Strength locking handle, and bacteria- and mold-resistant sanitary gel-coat surfaces.

Kudos to Mike Duffer and Safe Step Walk-In Tubs! What a generous, thoughtful and kind donation. In honor of such thoughtful and generous acts, MyChild is announcing the MyChild Blue Ribbon Challenge urging others to come forward to share stories of those that greatly contribute to the quality-of-life of an individual with cerebral palsy.

For more information on Mr. Duffer and Safe Step, visit Safe Step Walk-In Tubs. To see before and after tub installation photographs, visit Safe Step Walk-In Tub Installation

To contact Mr. Duffer (to thank him for such a wonderful gesture) or Safe Step:

Mike Duffer
Safe Step Walk-In Tub Company
1650 Elm Hill Pike, Ste. 5
Nashville, TN 37210
1-800-NEW-TUB (1-800-639-8827)

About Safe Step Walk-In Tub Company: Safe Step tubs are manufactured and built in America, using American-made components. Their quality is backed with the best warranty in the business, including a lifetime warranty on the tub, the door seal and faucets. Servicing all of the US and parts of Canada, Safe Step Walk-In Tub is a family company, headquartered in Nashville, Tenn.

The MyChild Blue Ribbon Challenge: If you know of other generous donations or gestures which improve the quality-of-life of an individual with cerebral palsy, we would like to hear from you. Contact MyChild at or share your story at Share Your MyChild Blue Ribbon Story.

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Living With Disability is a Road Block.
Choose to Go Down Another Path.

Posted in TheCPBlog® Product and Services by Denise on August 29, 2012 • Read Comments: (1)

Born in the 50’s, I was slow to develop. My parents consulted a local doctor who advised to “give it some time.” In 1968, armed with what little available resources my parents could save, my mother consulted with doctors at a leading hospital in Baltimore, Maryland. After a series of tests, it was determined that I had brain damage without a whole lot they could do to change the damage. They suggested I be institutionalized.

Mom then found another facility in Philadelphia, Pennsylvania. They focus on the achievement of human potential. After another round of tests, they developed and implemented a program to suit my needs. For the next three years I endured a battery of exercises involving body movement, eye exercises, and breathing. The purpose of these exercises was to stimulate the blood more efficiently to my brain. Every three months we drove to Philadelphia for a progress evaluation. I improved steadily over time.

In 2007, and nearly 50-years-old, I was diagnosed with autism. This was a shock to me, but I developed the “life goes on” mantra. I read a book authored by Temple Grandin, an American doctor of animal science and professor at Colorado State University. She is known for her work in autism advocacy. I then watched her award-winning biographical film, Temple Grandin, which motivated me to write my own memoir.

The purpose of my book, Living Life with Autism: The World Through My Eyes, is to help, inspire and educate others, especially those whose journey is similar. For those with autism, cerebral palsy, or any number of other impairments or disabilities I offer this message: Living with a disability is not a death sentence it is a road block, so go down another path. Instead of letting autism over take you, over take it.

To learn more about my book, Living Life with Autism: The World Through My Eyes, visit Living Life With Autism: The World Through My Eyes. The book is available at can be purchased at Amazon and Barnes and Noble.

Sincerely,
Marc Pulver
Author

Robert Shostak, Contributor

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My Disability Gave Me Abilities

Posted in TheCPBlog® Inspiration by Denise on August 28, 2012 • Read Comments: (1)

Tonight my heart was heavy and I began searching and was overjoyed to find this website. God has been nudging me to share my story for quite some time but in the back of my mind I have always “counted it out” as a story not worth telling.

Tonight is different and I am here to encourage the people that my story might impact. My name is Misty and I am 31 years old with Mild CP. At a very early age my mother noticed that I was not as mobile as I should be. I began completing tasks in non-traditional ways more suitable for my “gift.”

Now keep in mind….I didn’t always view it as a “gift”. As a matter of fact it was quite the opposite for me…most especially during those painful physical therapy appointments that seemed to go on and on, or the kids and teachers in class that just didn’t quite understand me. However I continued to defy the odds by doing all the things that the specialists did not think I would ever be able to do. Talking, eating by myself, tying my own shoes, riding a bike, participating in gym class…the list is endless but I had a plan that differed from theirs.

My plan was to live my life making the best of every situation and not allowing my CP to define who I was as a person. That plan continues today and I strive to help others that are in my shoes. I refuse to call this a disability because in my eyes it is just the opposite.

This “disability” gave me ABILITIES….abilities to love, to care, to see beyond, to reach higher when I was told I couldn’t, to strive through pain because I saw what was on the other side and most importantly to share my story when I would never have had the opportunity to otherwise.

With Love-
Misty
Tucson, Arizona

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Adventure, Hope, Love and Cerebral Palsy

Posted in TheCPBlog® Inspiration by Denise on May 30, 2012 • Leave a comment! (0)

I have a 9 yr old son that has spastic quadriplegic cerebral palsy and cortical vision impairment. When he was diagnosed at 4 months we had no idea of all that this diagnosis entailed and how it would affect our lives.

Let me just say that it has been a different type of whirlwind. We have had our ups and downs with the ups winning. My son is totally dependent on us with all things like feeding, bathing, he is still in diapers, etc. He has started talking some which is wonderful.

Despite all this my son has made a positive impact on our lives. He has introduced my husband and me to a special world with wonderful people. Through my son I have met some of the most amazing children and adults that I would not have otherwise had the opportunity to meet.

We have experienced things and people that would have been lost to us otherwise. We have our moments of frustration like any other family but overall life is great. My son has opened my eyes in ways I never thought possible. I know he will probably always be with us and I will tell you that I look forward to a lifetime with him.

We all feel frustration, it is normal. In life there are all types of situations and ours is just a special one that adds adventure and hope and love. Our son is truly a blessing and will continue to enhance our lives.

Deana B.
Adairsville, GA

Visit Deana’s Website: http://teamlittlejake.wordpress.com

The Ultimate Blog for Everything Cerebral Palsy™


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