Cerebral Palsy Family Network

HBO to Premiere MISS YOU CAN DO IT Pageant Doc on 6/24

noreply@blogger.com (Anonymous) — Wed, 05 Jun 2013 19:48:00 +0000

HBO to Premiere MISS YOU CAN DO IT Pageant Doc
on 6/24

One special weekend every year, the small Illinois town of Kewanee (population 12,916) turns into a place of celebration and delight, as the annual Miss You Can Do It pageant spotlights young girls with disabilities from around the country. Abbey Curran, Miss Iowa 2008, started the pageant in 2004 to offer these girls, who like herself have special needs, the opportunity to be celebrated for their inner beauty and spirit.

Directed and produced by Ron Davis (“Pageant”), MISS YOU CAN DO IT tells Curran’s story and follows eight heroic young girls with physical and mental disabilities as they participate in the pageant when it debuts MONDAY, JUNE 24 (9:00-10:15 p.m. ET/PT), exclusively on HBO.

Other HBO playdates: June 27 (11:30 a.m.) and 30 (8:30 a.m.), and July 2 (1:30 p.m.) and 6 (3:00 p.m.)

HBO2 playdates: June 26 (8:00 p.m.) and 28 (5:15 p.m.), and July 9 (11:35 p.m.), 25 (7:40 a.m.) and 27 (8:40 a.m.)

HBO Documentary Films presents another weekly series this summer, debuting provocative new specials every Monday, June 10 to Aug. 12. Other films include: “Pussy Riot: A Punk Prayer” (June 10); “Love, Marilyn” (June 17); “Gideon’s Army” (July 1); “Gasland Part II” (July 8); “The Crash Reel” (July 15); “The Cheshire Murders” (July 22); “First Comes Love” (July 29); “Casting By” (Aug. 5); and “Americans in Bed” (Aug. 12).

Diagnosed with cerebral palsy at age two, Abbey Curran never accepted her physical limitations. She admits her disability comes with lifelong challenges, but none that hold her back, playing sports (she “just falls more”) and driving a car with a special steering wheel and brake. Curran’s resilience and determination to pursue her dreams led her to become the first woman with disabilities to compete in the Miss USA Pageant(R) in 2008.

MISS YOU CAN DO IT highlights the extraordinary work Curran is doing with the pageant she founded. Curran and a team of enthusiastic volunteers give participants a chance to be celebrated for all they are inside, not just defined by what the world sees on the outside. For one special weekend the young girls, along with family and friends, some who have traveled far distances, spend time in an oasis of fun, femininity and celebration.

No one leaves the pageant empty-handed, with each girl receiving a special award. The real winners of the pageant might be the families and friends, who proudly cheer them on from the audience.

Among the girls and families profiled are:

Five-year-old Tierney, who gleefully zips around in a powered wheelchair in excited anticipation of the pageant, while her mom explains that she’s never walked and will progressively lose movement throughout her body. Tierney has spinal muscular atrophy type II, a slow deterioration of all muscles.

Natasha, 14, who was born with cerebral palsy and suffers from seizures, and Kenna, her younger sister, who has intellectual disabilities. Despite these challenges, “they are a happy-go-lucky family,” according to their proud parents.

Precocious six-year-old Ali, who has four best friends, one mischievous and imaginary, and three in their 60s: Judy, Judy and Rock, who enjoy watching Ali’s physical therapy sessions on a horse, which helps with her balance. Ali was born with spina bifida, a hole in the spine that caused paralysis of her lower body.

Teyanna, a smart and creative preteen, whose mother says that after she was born, a nurse suggested they put her in an institution, but they refused and raised her at home. Teyanna has speech difficulty due to cerebral palsy.

Seven-year-old Daleney, whose parents say her biggest frustration is her lack of independence. Still, she never shows it, even if she takes 15 minutes to tie her shoelaces. Daleney is a quadriplegic with a spastic form of cerebral palsy, causing her to have too much muscle tone and making her limbs cross her midline when she walks.

Tiny Meg, who is shy, except when she’s with her brothers. Wanting Meg to have a sister to connect with, her parents adopted Alina, a girl from Ukraine. Both Meg and Alina have Down syndrome.

MISS YOU CAN DO IT celebrates the heroism of their parents and families, who openly describe how the heartbreak of learning that their child was different quickly gave way to loving patience, dedication and a new appreciation for the joys and challenges of raising a child with special needs.

Says Curran, “I hope that my Miss You Can Do It girls leave this pageant knowing that, okay, we might fall down, or someone might stare at us, but I just did something amazing. Something that not very many people get to experience.”

Pageant volunteer Jan Selman adds, “Miss You Can Do It is not about what’s wrong with these girls. It’s about celebrating what’s right with them.”

Ron Davis began his filmmaking career at the New York Film Academy, where his first two short narrative student films, “The Business Traveler” and “The Garden,” earned him a top-ten finalist spot in the 2004 Esquire Magazine Celluloid Style film competition. His first documentary, “Pageant,” garnered ten film festival awards.

Solar Powered Wheelchair Wins Award

noreply@blogger.com (Anonymous) — Tue, 28 May 2013 14:32:00 +0000

Solar Powered Wheelchair Wins Award
By Energy Matters

A team from University of Virginia’s School of Engineering and Applied Science recently won first place in a 2012 World Cerebral Palsy Day competition for their solar powered wheelchair design.

We first reported on solar wheelchairs back in 2010, when Haidar Taleb had just begun a journey to take him across the United Arab Emirates.

Inspired by roofs on convertible cars, the lightweight solar panels on the U.Va. team’s wheelchair are retractable and don’t significantly add to its length, width, height or weight when stored. A system of hinges on both sides of the chair controls the deployment of the solar panels. The three panels have a conversion efficiency of 15% and a capacity of 160 watts.

Here is a link to a video demonstrating the chair in action!
http://youtu.be/GRr6O-1-Jqk

When fully deployed, the custom solar panels cover an area of over one square meter. The wheelchair can operate for more than 4.5 hours at a speed of 8 kilometres per hour on a fully charged lead acid deep cycle battery, a range increase of more than 40 percent over batteries alone. At a speed of 1.6 km/h and suitable light exposure, the wheelchair and can run “indefinitely”; without needing to utilise battery power.

Built with lightweight materials, while the system may look fragile, it has been designed to operate under conditions more extreme than would be experienced in normal use. The panels and retractable mechanisms account for less than 15% of the completed wheelchair’s unoccupied weight.

Anyone with enough physical dexterity to use a joystick can operate the chair; including retracting and deploying the solar panels. In addition to standard features common to this type of wheelchair, USB power outlets are provided that can power a wide range of small devices.

In a wonderful display of generosity, the team will use their prize money to perform some final tweaks to the chair give it the individual in Turkey who submitted the initial suggestion for a solar-powered wheelchair.

The remaining prize money will be returned to United Cerebral Palsy in support of future World CP Day competitions.

View original article.

St. Louis Doctor with Cerebral Palsy Offers Hope

noreply@blogger.com (Anonymous) — Fri, 24 May 2013 16:19:00 +0000

St. Louis Doctor with Cerebral Palsy Offers Hope

ST. LOUIS - Dr. Jan Brunstrom-Hernandez gently but sternly admonishes a teenage cerebral palsy patient who clearly hasn’t been doing his exercises, stressing the importance of keeping muscles loose and limber.

“We know it’s not fair, but that’s the way it is,” Brunstrom-Hernandez tells 15-year-old patient Sam Ward. “Do you hear me? I know what I’m talking about.”

Brunstrom-Hernandez, who founded the Cerebral Palsy Center at St. Louis Children’s Hospital 15 years ago, has cerebral palsy, giving her a special empathy for the people she treats.

Cerebral palsy is a broad diagnostic term referring to disorders that affect movement and posture. It is caused by injury or abnormal development of the brain, usually before birth. Many patients suffer from other afflictions, too, such as speech or hearing difficulties. Symptoms vary greatly.

Brunstrom-Hernandez, 50, was surrounded by doctors from a young age as she coped with the disorder. She figures that’s a big reason she knew as a small girl she wanted to be a doctor. Still, she initially balked at specializing in treating others with cerebral palsy.

“I didn’t want to be surrounded by more of me,” she said. “I didn’t feel good about myself because of my disability.”

A chat in 1997 with Dr. Mike Noetzel at St. Louis Children’s Hospital changed all that. At the time, Brunstrom-Hernandez was doing research on cerebral palsy and was surprised to learn treatment hadn’t progressed much beyond the treatment she received in the 1960s. He suggested she launch a cerebral palsy clinic.

“All I said was, ‘You’ve got some good ideas. I think people would listen to you. Let’s at least try to start something,’” he recalled.

The clinic opened in May 1998.

Many clinics in the U.S. treat cerebral palsy among many other neurological disorders, but the St. Louis center is unique in its singular focus, said Kaelan Richards of United Cerebral Palsy.

Brunstrom-Hernandez and her team of doctors and therapists see patients of all ages — babies to adults — from across the world. The center has treated about 2,000 people since opening 15 years ago.

Sam, at the clinic recently with his parents, is in many ways a typical teen. He wore a T-shirt, shorts and sported a sly grin as Brunstrom-Hernandez examined him — even through her motherly admonitions.

“She helps me walk better,” he said. “Just be better.”

Anna Marie Champion of Atlanta has been bringing her daughter, Morgan, on the 11-hour trip to the St. Louis clinic for 10 years, since Morgan was 3. Morgan uses a walker but is scholarly and motivated, a seventh-grader who already has earned a college scholarship.

“We went to St. Louis, and it was a whole different approach,” Champion said. “It has turned her life around completely.”

Brunstrom-Hernandez stresses the need for exercise and communication. From childhood, movement was difficult for her.

“If the wind was blowing hard enough, I’d fall down,” Brunstrom-Hernandez recalled.

Her mother made her keep moving, even requiring her to stand in the kitchen to do dishes when it was the last thing the little girl wanted to do.

“She insisted that I not be dependent,” Brunstrom-Hernandez said. “She insisted that I pull my weight. It’s a good thing. It made me tough, and it made me strong.”

Strong, yes, but Brunstrom-Hernandez acknowledged she sometimes felt embarrassed by cerebral palsy. She recalled how she would recoil if she caught a glimpse of mirrored glass showing her struggling to walk.

It wasn’t until she started the clinic that she embraced who she was and what she could do to help others.

“I have gotten as much or more out of taking care of these patients as they have ever gotten from me,” she said. “It changed my life. They saved my life. They taught me how to believe in myself. They taught me how to look at myself differently.”

Moving around the clinic, only Brunstrom-Hernandez’s gait shows any effects of her cerebral palsy, though rheumatoid arthritis causes her pain. She acknowledges it can be physically exhausting.

“I have to work all the time to stay on my feet,” she said.

It’s a dedication that doesn’t go unnoticed by her colleagues.

“I think the empathy does come through,” Noetzel said. “Her line is kind of a tough one: If you really want to do best, this is what you need to do. I think there’s a much greater acceptance coming from her.”

Read original article.

Summer Heat Safety Tips

noreply@blogger.com (Anonymous) — Thu, 16 May 2013 14:33:00 +0000

Summer Heat Safety Tips

By Lee Vander Loop
CP Family Network Editor

Summer is nearly here! Kids are anxiously awaiting the end of the school year and families are beginning to plan summer outings, vacations and outdoor adventures. It’s a time of sports, outdoor play, family gatherings, and warmer weather.

With the additional sun exposure, we as parents have the responsibility of keeping our kids safe during the long, hot days of summer. We’ll highlight some of the risks the summer heat poses and what you can do to protect your children and family for an enjoyable, healthy and safe summer.

Protecting Kids from Sun Exposure

Many of us are all too familiar with the pain of sunburns. For parents of children with special needs, extra vigilance is needed. A non-verbal child cannot communicate to you when they are thirsty or feeling the effects of excessive sun exposure. Kids don’t have to be at the pool, beach, or on vacation to get too much sun. Their skin needs protection from the sun’s harmful ultraviolet (UV) rays whenever they’re outdoors. The American Academy of Dermatology estimates that kids get 80 percent of total sun damage by the age of 18. Sunburn also affects your body’s ability to cool itself and causes a loss of body fluids. Follow these tips to keep your family safe this summer.

Timing is Everything

Seek shade. UV rays are strongest and most harmful during midday, so it’s best to avoid outdoor activities during this time. If this is not possible, seek shade under a tree, an umbrella, or a pop-up tent. Remember, it’s important to take precautions before a sunburn occurs, not once the damage is done.

Cool and cloudy? Children still need protection. UV rays, not the temperature, do the damage. Clouds do not block UV rays, they filter them—and sometimes only slightly. Make sure to take proper precautions even when the sun isn’t shining.

Cover Up

Protective clothing. Clothing that covers your child’s skin helps protect against UV rays. A T-shirt, long shorts, or a beach cover-up are good choices—but it’s wise to double up on protection by applying sunscreen or keeping your child in the shade when possible.

Get a hat. Hats that shade the face, scalp, ears, and neck offer the best protection. Baseball caps, although popular among kids, don’t protect their ears and neck. If your child chooses a cap, be sure to protect exposed areas with sunscreen.
Wear sunglasses. Sunglasses protect your child’s eyes from UV rays, which can lead to cataracts later in life. Look for sunglasses that wrap around and block as close to 100% of both UVA and UVB rays as possible.

Sunscreen

Apply early and often. The CDC recommends the use of sunscreen with at least SPF 15 and UVA and UVB protection every time your child goes outside. For the best protection, apply sunscreen generously 30 minutes before going outdoors. Since no sunscreen is truly waterproof, reapply again after they’ve come from the pool or other water sports activities. Don’t forget to protect ears, noses, lips, and the tops of feet. Keep in mind, sunscreen is not meant to allow your kids to spend more time in the sun than normal, it’s meant to reduce damage from UV radiation. It doesn’t eliminate the threat.

Protecting infants. Although babies younger than 6 months should be kept out of direct and indirect sunlight because of their increased risk of heat stroke, The American Academy of Pediatrics now advises that sunscreen use on babies less than 6 months old is not harmful on small areas of a baby’s skin, such as the face and back of the hands. Your baby’s best defense against sunburn is avoiding the sun and staying in the shade.

Precautions for Special Needs Children

Medication precautions. Children on a variety of prescription medications are especially vulnerable to heat related illness. Check your child’s prescriptions for warnings in relation to sun exposure. The risk for heat-related illness and death may increase among children using certain medications such as drugs: (1) which affect psychic function or behavior; (2) medications for movement disorders or seizures, because some medications can inhibit perspiration; and (3) diuretic medications or “water pills” that affect fluid balance in the body.

Wheelchair users. For children who are non-ambulatory and stroller or wheelchair dependent, extra caution is needed. Seek shade for your wheelchair dependent child and take all other necessary precautions listed here. Wheelchairs make heat even more unbearable. The cushions heat up and the plastic covers may cause excessive sweating, which can lead to dehydration and skin breakdown. Also be mindful that the metal portions of a wheelchair or stroller can become extremely hot in a very short period of time when exposed to direct sun. Protect your child from contact burns by covering any accessible arm rests and metal frame portions of the chair that your child may come into contact with. Wheelchair umbrellas are one way to provide added protection.
Be prepared. If you plan on an extended outing, be sure to pack a cooler of ice and cold drinks. If you have a child who is tube fed and will need to be fed during the course of your outing, packing formula in a cooler with ice is a safe way to prevent spoilage. You’ll also want to keep small bottles of water in a cool place for any needed tube flushes, before or after feeds.

Conclusion

Avoiding sunburn and heat related illness is relatively straightforward if you follow these basic precautions. Being prepared, paying attention to weather conditions, and monitoring your child’s reactions to the heat and sun can help ensure your special needs child can enjoy outdoor activities this summer.

Additional Information

CDC Protecting your Child in the Sun

American Academy of Pediatrics, Baby Sunburn Protection

Join Our Family

Family Vacations for Children with Cerebral Palsy

noreply@blogger.com (Anonymous) — Thu, 16 May 2013 14:31:00 +0000

Family Vacations for Children with Cerebral Palsy

By John Lehman

Planning a vacation is an exciting but sometimes difficult task for any family, particularly families who have children with cerebral palsy. Special considerations must be taken into account well before the plane tickets are purchased. Fortunately, the task is not impossible. With a little bit of research, homework and proper planning, you can rest easy knowing your cerebral palsy child will have a fun and relaxing experience during your family’s vacation.

How to Prepare

There are many things you should keep in mind when deciding on a destination for your family vacation. Perhaps the most important step you can take when planning your vacation is to call your destination in advance and make sure they can accommodate your child. This includes potential hotels, restaurants or any attractions you are considering.

For example, will your hotel have adequate wheelchair accessibility? What about allergy risks? Are there hospitals nearby in the event of an emergency? All of these questions should be answered by calling your hotels or destinations ahead of time, well before you book your rooms. If the accommodations aren’t satisfactory, you’ll want to consider a different location.

Being in a new place may be disorienting for your child. You’ll want to be prepared in the event that your child panics or becomes upset. Some families combat this by trying to stay true to routines that their child is used to. If your child takes a nap in the afternoons, make sure you set aside time to allow him or her to do so. Of course, if your child is taking special medications, you’ll want to bring these along and have them take the medications at the appropriate time. Make sure you bring extra pills or dosages, just in case.

Where to Go

In today’s world, vacation destinations have proven to be much more accommodating towards special needs families than in decades past.

Some destinations are specifically designed with special needs families in mind. One such location is Morgan’s Wonderland, located in San Antonio, Texas. This amusement park’s mission is to provide an environment where all children can have fun together, regardless of their disability (or lack thereof). Activities include fishing, carousels, playing musical instruments, watching shows performed hourly and taking part in more traditional park activities, such as swing sets, sandboxes and slides. All of these activities are fully accessible for both children and adults with a variety of conditions.

Resort vacations aren’t out of the question, either. Some families with special needs have enjoyed visiting the National Ability Center in Park City, Utah. The center has many different active and outdoor activities for you and your family to enjoy year round, such as horseback riding, hiking, skiing, swimming and more. The center prides itself at offering these activities to children of all ages and ability levels, with the hopes of improving self-esteem, confidence and physical strength in the process.

Even famous resorts, such as Disney World, are renowned by special needs families for their excellent accommodations. Lodging at one of Disney’s many resorts are fully equipped for children or families with special needs, including text-to-speech devices, detachable showerheads and safety bars. Many of their biggest attractions have accommodations for special needs families as well.

Join Our Family

Obama Administration Looks To Improve Transition Outcomes

noreply@blogger.com (Anonymous) — Tue, 14 May 2013 20:03:00 +0000

Obama Administration Looks To Improve Transition Outcomes

By Michelle Diament

In an effort to identify better strategies to help young people with disabilities transition from school to work, a handful of federal agencies are seeking public input.

Starting Monday, the U.S. Departments of Labor, Education and Health and Human Services as well as the Social Security Administration are kicking off a two-week so-called online dialogue.

The agencies are asking policymakers, educators, service providers, families and youth with disabilities themselves to share their thoughts through a Web interface on how to improve transition outcomes.

Federal officials say they hope to learn about regulatory and legislative barriers that young people with disabilities are facing in accessing employment, education, Social Security and health and human services. Ultimately, the input received on the website may help shape future policies and practices, they said.

“We must ensure that our federal programs and resources support our nation’s youths and young adults with disabilities in reaching their dreams of economic empowerment and independence, and we need to hear from many people,” said Kathy Martinez, assistant secretary of labor for disability employment policy. “Speaking up online can help us identify barriers as well as opportunities that may exist at the federal level and also help us develop solutions.”

View original article.

Join Our Family

Student with Cerebral Palsy Named Prom Queen

noreply@blogger.com (Anonymous) — Mon, 13 May 2013 18:43:00 +0000

Student with Cerebral Palsy Named Prom Queen

By Misty Watson

In many ways, Desaray Carroll is a typical high school teenager.

She texts nonstop, hangs out with her friends, goes to the movies and out to eat.

The 19-year-old Coahulla Creek High School student is surrounded with a family and friends who love and support her, so much so they campaigned for the student body to elect her prom queen a few weeks ago.

Everyone except Carroll seemed sure she would win. But after a lifetime of being picked on for being different, she never thought she could be the same as those around her.

“At my old school, I got made fun of,” she said. “I didn’t want to go to school. It was really hard. At one point I quit school, but I came back.”

Carroll has cerebral palsy, a disorder that affects muscle tone, movement and posture. People with cerebral palsy can have exaggerated movements, rigidity of the limbs, involuntary movements, unsteadiness while walking or any combination of those symptoms.

She struggles with her speech — though after a few minutes with her, she becomes easier to understand — and movements on the right side of her body.

So going from the person being picked on to the point of quitting school to being given a title that comes with such an implication of popularity seemed like a stretch for her.

When her name was called out on prom night announcing she had been named prom queen, Carroll was naturally and genuinely shocked.

“I didn’t believe it,” she said. “I really like it here. They don’t look at me like I have cerebral palsy.”

Carroll’s friends and her teachers said they believe it is a great testimony to the student body at Coahulla Creek.

“Their heart is in the right place,” said Josh Swiney, Carroll’s math inclusion teacher. “They’ve been around her and wanted that for her. She’s awesome.”

Andy Toth, a sign language interpreter of the school and adviser to the sign language club, of which Carroll is a member, said he knew the student body was rallying for Carroll.

“I prayed all weekend she’d get it since I couldn’t vote,” Toth said. “She is a perfect pick for it. We’ve got a good student body. They’re not caught up in stereotypes. We realize what’s real.”

A Girl with Determination

As a very young girl, Carroll fit in with other children, including her foster family.

“She was accepted by them, and they love her,” said Jennie Byars, Carroll’s foster mother, who became her legal guardian in 1997. Byars had four children naturally, has adopted several and has even more that refer to her as “mom,” including Carroll.

“I didn’t want her when they first called me,” Byars said. “Then I thought, ‘Why am I doing this if I can’t help the ones that really need it?’ When they brought her to me (when Carroll was 16 months old), I saw a handicapped child. But then I saw a girl with a lot of determination. She bonded with us quickly. After a couple of weeks, I didn’t see her as handicapped.”

Byars and her late husband, Slim, encouraged Carroll’s independence from an early age.

“I tried to let her do what she could,” Byars said. “They wanted to give her a walker, and I said, ‘No. She doesn’t need one.’ They wanted to give her a board to talk for her, but I wouldn’t let them. We treated her like one of the kids. I tried not to limit her. You have a tendency to want to coddle her, but she didn’t want you helping her.”

Byars spent many hours taking Carroll to physical therapy and working with her to make sure she could walk and talk and live a normal life. Byars believed in her daughter, pushed her where she needed to be pushed, and comforted her when she needed to be comforted.

“Her therapist said she was stubborn, but I said she was determined,” she said. “If she hadn’t been determined, she wouldn’t be where she is now.”

As a child, Carroll could only walk on flat surfaces, not inclines. But she used a mulch pile to learn to walk on an incline.

“She was determined, struggled, but she climbed that mountain — in more ways than one,” said family friend Nancy Reynolds.

Carroll says many things in her life have been hard.

“But it could be worse,” she said. “It’s hard talking, but when people get to know me, they understand me better.”

She can’t even pull her hair back in a ponytail because she doesn’t have full use of her right hand.

She knows she’s made it as far as she has because of the support from her foster parents.

“They’ve been there for me,” Carroll said. “I’m lucky to have them.”

Coming Out of Her Shell

When Carroll hit middle school, she faced bullying.

Her friends sat at her side talking about how they were all bullied throughout middle school and into their early high school years. Zenaida Torres remembers other students being especially mean to Carroll. The two became friends passing each other in the counselor’s office where they went to talk through the problems they each faced.

Three years ago Slim Byars died. Jennie Byars was diagnosed with stomach cancer soon after. (She recently had a PET scan, which came back clean of cancer.)

Carroll hit a really hard time facing so many trials in just a few years.

“She was really a daddy’s girl,” Byars said. “These last two years (when she enrolled at Coahulla Creek), she has really come out of her shell. The kids are great. They’re more accepting here.”

Carroll said she changed her outlook on life and those who were mean to her after her dad died. That’s when she found a strong faith in God.

“I know God won’t put me in anything I can’t go through,” she said.

Now if a student picks on her or if she’s having an especially hard day, she simply “doesn’t let it bother” her. She has been inspired by Nick Vujicic, a motivational speaker and author who has no limbs. He is a reminder to Carroll that she is not the only one who faces struggles or who is different.

‘An Awesome Friend’

Her hope and positive outlook serves as an inspiration to not only the student body and faculty at Coahulla Creek, but to many who have met her.

“Today I had a bad day,” Torres said. “She sends me excerpts from Nick Vujicic’s book. It helps me a lot. Even though she had a bad day, she never got sad.”

Carroll is someone Savannah McCraw looks up to and thinks more people should become friends with.

“We had some classes together,” she said. “A lot of people are too shy to talk to her. I decided I wanted to get to know her. She’s really an awesome friend. She always knows how to make me feel better.”

Even if Carroll is having a terrible day, she is sweet and kind to everyone.

“I never hear her say anything mean about anyone,” McCraw said. “You can never tell if she’s having a bad day.”

Carroll may struggle with some everyday tasks, but she possesses many traits her friends don’t.

“She’s able to do stuff we’re not able to,” Torres said. “She stays strong. She has people here that love her and support her.”

View original story.

Join Our Family

Boy with Cerebral Palsy Takes First Steps after Life-changing Operation

noreply@blogger.com (Anonymous) — Fri, 10 May 2013 20:12:00 +0000

Boy with Cerebral Palsy Takes First Steps after
Life-changing Operation

By Emma Innes

A two-year-old with cerebral palsy has taken his first steps after undergoing a life-changing operation.

Abe Astur has spastic diplegia which tightened his leg muscles, restricted his movement and, until recently, forced him to use a walking frame.

His family raised £50,000 to pay for him to have a selective dorsal rhizotomy operation, in the U.S. because the procedure is not widely available in the UK.

The operation involves severing the nerves in the spine that send messages to paralyse the leg muscles. With the tensed muscles free to resume normal movement, the patient is then able to walk.

Abe’s mother Leigh, 35, from Winchester, Hampshire, said: ‘We are thrilled it went well.

‘It’s now a case of building up Abe’s muscles he has never used before and we are pleased we went through with the operation in America.

‘His surgeon says Abe will walk independently within six months of the procedure.

‘This is the best prognosis we could have wished for and Abe has been amazing.

‘The surgery was tough and we spent a week in the hospital in St Louis, Missouri, as part of a month out there.

‘But because he is so young he didn’t fully understand what was going on and he accepted everything and handled it very well.’

Ms Astur added that the surgeons believed Abe will even be able to play sports in the future.

She said: ‘This procedure should be more accessible and medical people should be more knowledgeable in the UK.

‘It’s an operation which parents in England should be aware of but it’s just so difficult to get funding.

‘We have been talking to Steve Brine, Winchester MP, about taking this issue to Parliament and he has been a fantastic help.

‘It makes my blood boil to think children have grown up with difficulty when they could have had this operation.

‘Hopefully between us we can change another child’s life by alerting people to this procedure.’

The family, including Abe’s father Gavin, 38, and sister Thea, four, held a party to thank people who donated towards the cost of the operation.

View original story.

Join Our Family

Woman with Cerebral Palsy Wants to Help the Blind

noreply@blogger.com (Anonymous) — Thu, 09 May 2013 15:02:00 +0000

Woman with Cerebral Palsy Wants to Help the Blind

By Rachel Belle

When Kirkland’s Tania Finlayson communicates, what you hear is a series of beeps.

“I have cerebral palsy, which occurred at birth. My disability makes it hard for me to control my body movements. I have always been non verbal.”

Those words came out of a speaker, in a woman’s computerized voice, attached to her wheelchair. Tania tilts her head back and forth to trigger a couple of devices that allow her to use Morse Code to communicate. The Morse Code is translated to type on a screen in front of her, and then the words come out of a speaker. She started using Morse Code when she was 11 or 12 and it changed her life. She could finally communicate.

“My mom did not dress me in plaid anymore. I could tell on my brother. And I finally had the chance to annoy my dad with question after question about the world.”

Tania is out in the world. Always smiling, she met her husband Ken in a skydiving chatroom. Yes, skydiving. She has jumped from planes countless times.

“We have been together for 15 years and seven years ago we became parents to the most wonderful boy in the world. I have the best family. It still amazes me at times, how lucky I am.”

Tania was at a Flight For Sight Fun Run in Everett, an event that benefits Guide Dogs of America, when she realized just how lucky she was to have her vision.

“I am able to help others despite my physical challenge and I wanted to do more to help. So I thought driving to Spokane would challenge me and something that I could do almost on my own. I told Ken and my son first. Ken thought I was off my rocker but he supports me even so.”

From June 8th through June 11th, Tania will take to the open road and drive her wheelchair 300 miles from Kirkland to Spokane, with a goal of raising $42,000. That’s how much it costs to provide a blind person with a guide dog.

“I thought that she was crazy,” Ken said. “But, I mean, she’s come up with a lot of crazy things, I mean we met skydiving. One thing I learned about Tania is that it’s a lot more comfortable and safer to get behind her when she gets her mind in something, than get in front of her. Because if you get in front of her she’ll probably just run you over.”

Of course, Tania won’t be alone. Ken will ride his bike alongside her, as much as he can, and they’ll have a support van filled with family and friends.

When I asked Tania about where she gets her determination, she credits her family.

“A few doctors told my parents I probably wouldn’t amount to anything and would cause great distress to the family. They suggested my parents put me in an institution. But my parents did not take the advice and took the challenge. My family’s greatest gift to me was they raised me like a normal child and did not expect any less of me throughout my childhood.”

Ken says Tania designed her Morse Code translator herself, despite having a degree in recreation, not engineering, and she now markets the product to others with physical constraints.

Ken thinks she can do anything she puts her mind to.

“People say driving to Spokane is an amazing endeavor,” Tania says. “But in my eyes it is just a pebble in my journey in life to lend a helping hand to Guide Dogs of America. Hopefully I will be able to help knock a boulder out of someone’s path in their journey in life.”

To sponsor Tania’s journey, A Spokane Dash For Puppy Cash, click here or check out the Facebook page.

View original story with audio.

Cerebral Palsy Doesn't Stop This Girl From Dancing!

noreply@blogger.com (Anonymous) — Wed, 08 May 2013 21:52:00 +0000

Jenn Solomon sent us this video of her daughter, Rachel, participating in a dance at her summer camp!

"Here is a video of my little girl Rachel, 7 years old. She made a wish at her summer camp this summer (Double H in NY) that she would be able to be in a Hip Hop recital and be on stage like a regular kid. Well, here she is! And if I do say so myself she is better than a regular kid."

http://www.youtube.com/watch?v=eRmzMCrO8OI&list=LLo60IQwMxS6xminBbofb83g&feature=mh_lolz

Abilities Expo: Enhancing the Lives of People with Disabilities

noreply@blogger.com (Anonymous) — Mon, 06 May 2013 14:49:00 +0000

Abilities Expo: Enhancing the Lives of People with Disabilities

By Stacey Bucklin

We recently posted an “In the News” story from CNN about assistive technology called“Rule Your Computer with a Head-Mounted Laser Beam.” The product intrigued me (who doesn’t love laser beams?), but what really piqued my interest was the event where it was featured, something called the Abilities Expo. I did a little digging and couldn’t resist sharing this resource with the CP Family Network community.

THE Event for People with Disabilities

The Abilities Expo, presented by Abilities365.com, plugs itself as “THE event for people with disabilities.” They even have programs targeted specifically for kids. Registration is FREE and grants you access to exhibitors offering the latest products and services, the opportunity to participate in free workshops, and world-class events and activities for all ages.

Their website states “For the past three decades, we’ve dedicated ourselves to making a better life for the 1 in 6 Americans with disabilities. This unique forum brings the Community together to learn, network and be empowered.” Expo exhibitors cater to children and adults with disabilities and their caregivers, offering products such as:

Assistive technology
Daily living aids
Medical equipment
Mobility products
Essential services

This video from www.karenkain.com seems to sum up the Expo pretty well. Karen is a Parent Ambassador for the 2013 Abilities Expos and has been attending the events for 17 years!

Upcoming Expos

Abilities Expo events are held across the United States (and even abroad!) every few months. Chances are there’s an Expo coming to a city near you. Here’s a list of upcoming events:

NY Metro – May 3-5, 2013
Chicago – June 28-30, 2013
Houston – August 2-4, 2013
Boston – September 20-22, 2013
Singapore – November 8-10, 2013
San Jose – November 22-24, 2013
Los Angeles – February 28-March 2, 2014
Atlanta – March 14-16, 2014

Share Your Story

Have you been to an Abilities Expo or a similar event designed to serve people with disabilities? What did you think? Share your thoughts in the comments below!

Join Our Family

CP Daughter Inspires Mom’s Passion for Photography

noreply@blogger.com (Anonymous) — Fri, 03 May 2013 16:28:00 +0000

CP Daughter Inspires Mom’s Passion for Photography

By Sara Sprague

View similar stories.

Being very career focused in my 20′s, I obtained my RN rather young. I went on to spend more than a decade dedicating my life to caring for and healing critically ill children in the Pediatric Intensive Care Unit, all the while dreaming of the day I might have my own child. After marrying my Prince Charming in 2008, it wasn’t long before we were expecting a precious baby girl.

Perfect Pregnancy Ends in a Heartbreaking Birth

In June of 2009, I had succeeded at a very healthy full-term pregnancy. Thirty-two hours after I was admitted to the hospital for labor, I knew something didn’t feel right. With each passing contraction I could feel that I could not advance the fetal head. After pushing for an additional one and a half hours, my caretakers realized that our daughter was not in a position for birth. She presented ear-first instead of crown of head-first. Much more concerning than her position was the discovery that her umbilical cord was completely prolapsed, cutting off her circulation and oxygen supply. I watched helplessly as her heart rate fell from 60 to 30 to 20 to reading nothing at all. I was whisked to the operating room with the OB riding in the bed to hold the fetal head off of the umbilical cord. Just before I was put under general anesthesia, I remember thinking I needed to prep myself for the possibility of waking to the news of a stillborn.

When I woke and was taken off the respirator, I was told that “Lyric,” named for her father’s musicianship, had survived.

When I was well enough to see her for the first time, I was still in a fog, but I noted abnormal newborn posturing right away. After having her evaluated by a Pediatric Neurologist, my fears were confirmed and Lyric was diagnosed with mild cerebral palsy and double left hemiparesis. In her infancy, she was not able to use her left arm/hand much at all and kept it tucked tight to her body.

Exhausting Schedule of Treatments and Therapies

All of Lyric’s developmental milestones were delayed and as she came into her toddler years, she required extremity braces, physical, occupational, and speech therapies five to six days a week.

This schedule grew exhausting fast and I felt like we had little life outside of the intensive therapies and focusing on what Lyric couldn’t do or should be doing at her age.

I decided we needed an OUTLET. An outlet that allowed me time with Lyric, that could perhaps CELEBRATE Lyric, and help me to see some positives instead of living in the perpetual state of what she “could not do.”

Channeling My Creative Energy through Photography

I had always dabbled in photography and found great joy in dolling Lyric up, experimenting with lenses, lighting, adding silly props and setting scenes. I took a few photos and submitted customer appreciation photos to the various children’s clothing designers from whom I had purchased. Before I knew it, I was getting requests from more and more designers for photographs.

By the time Lyric was 12 months old, I figured it was time to get some photography education under me and some professional equipment along the way. I took various classes/mentoring, began networking with area photographers, and taught myself Photo Shop – THE MOST UN-USER FRIENDLY program on Earth! As Lyric grew, so did the demand for my photography. By the time she was 18 months old, I launched a Facebook fan page to reach a larger audience. Soon after, I was requested by area mommies to photograph their little sweet peas and as it turns out, I had a bit of a knack for I, a talent I NEVER would have realized if it weren’t for the birth of my special needs darling.

Appreciating the Irony of Life’s Little Surprises

I realize my multitude of blessings now… to be a mother to a child who has come so far in her short life to become what you see today…to be married to the most incredible father and partner I could have chosen in this journey, to be a photographer on a full time basis and an RN only part time, and to be networked with literally hundreds of like-mamas who have taught themselves to sew, build websites, and pursue numerous other entrepreneurial endeavors to help them stay at home and available for their special needs children while still supporting their families.

It’s so very ironic how life unfolds with little surprises along the way. Lyric is now 3 years old and is more inspiring and amazing to me by the day. As her parent, the fear of the uncertain future can be overwhelming but I’ve had gentle hands to guide me along this path and take one day at a time… and a photo to cherish every day.

About the Author

Sara Sprague is a Registered Nurse of 10 years dedicated to Pediatric Intensive Care & Neonatal Intensive Care. After the birth of her own special needs baby, she decided to pursue her passion for photography on a professional level so that she could be more available at home. She now runs SAS Photography, a boutique baby photography company.

Is Constraint Induced Therapy Right for Your Child?

noreply@blogger.com (Anonymous) — Thu, 02 May 2013 14:28:00 +0000

You may have heard the term Constraint Induced Therapy (CIT) in a special-needs moms’ circle or during a therapy session with your child. Perhaps you’ve heard of its potential benefits in recent news stories. How much do you really know about CIT, and how do you determine if it’s right for your child?

Constraint Induced Therapy Defined

Pediatric Constraint Induced Movement Therapy or CIT is a type of treatment that teaches the brain to “rewire” itself following a brain injury. The focus is to restrict a child’s good extremity (arm, hand, leg, etc.) in order to force usage and improved function of the extremity needing rehabilitation. CIT often involves intensive training of the more-impaired extremity for a certain number of hours per day for a designated period of time. Children with a more severe level of spasticity or mobility impairment may require more daily hours of constraint and a longer period of intense therapy.

The CI Research Institute states that Constraint Induced Movement Therapy is the only rehabilitation technique shown to markedly change the organization of activity in the brain. Various studies have shown favorable outcomes suggesting that CIT may be a useful tool in the treatment of upper-extremity dysfunction in hemiplegic CP and other forms of CP.

Depending on the specific goals and level of achievement, it may take multiple sessions to realize the intended benefit. Remember, you’re re-training the brain!!! Be patient.

Is Your Child a Candidate?

CIT is not appropriate for every child with cerebral palsy. Talk with your pediatrician, therapists and orthopaedic specialist to discuss whether or not your child could achieve positive results from Constraint Induced Movement Therapy.

Your child will need to be monitored throughout the course of treatment to check for any complications. Discuss with your therapist what “trouble signs” you need to look for, such as chafing, rash or skin breakdown with the restrained limb. Check fingers and toes to make sure there’s no impediment of blood flow as a result of a cast or restraining device that is too tight.

Goals

Your therapist should have a Care Plan mapped out, detailing the specifics of your child’s therapy plan, including hours per day, additional therapies being implemented and the overall duration of the CIT sessions. Request a copy of the Plan. You may want to create a chart or journal tracking and annotating your child’s daily sessions. Detail the length of time the constraint device is used and what skills your childed work on during the session. Make notes of improvement and struggles. This will give the therapist a better picture of your child’s progress or need for additional assistance.

Coping Mechanisms

What is CIT like for a child? Here’s an analogy. If you’re right-handed, imagine someone casting that hand, forcing you to do everything with your left! Keep in mind, you probably have normal abilities and range of motion in your left hand. What if you didn’t? What if you had no good function in your left hand and now your right hand is immobilized! While adults you have the maturity and psychological skills to cope with frustration, many children do not. Couple that with a child’s immaturity and possibly an inability to communicate and you can imagine the reaction your child may have to this type of therapy.

There will be tears! Ask your therapist how to help your child establish coping mechanisms and ways to help your child get past the frustration. Make it fun! Incorporate play therapy in your CIT sessions! You want these sessions to be productive and fun, not a screaming match between you and your child. For children with developmental disability and cognitive delay, discuss with the therapist the best ways to introduce this therapy to your child.

For children with the cognitive skills to understand, have your therapist help you explain to your child the concept and goals of the therapy. Explain the number of hours per day the constraint session will last and try to set a schedule that everyone can agree with. Be sure to consider whether or not any of the constraint hours will overlap hours your child is in school. You may want to start out small and work up. Also try to schedule hours when you can play an active roll in your child’s session. Pediatric therapy based on stringency is unrealistic. You need to be consistent but flexible. There may be days when your child just isn’t being cooperative, and you find yourself skipping an hour here or a day there. Discuss with your therapist some ideas that will give you flexibility for the unexpected.

Conclusion

As with any new therapy, consult your child’s doctors and care providers before embarking on a treatment plan. Do your research and weigh the benefits and risks before deciding whether or not Constraint Induced Therapy is right for your child.

Join Our Family

How to Take Time for Yourself

noreply@blogger.com (Anonymous) — Tue, 30 Apr 2013 18:11:00 +0000

How to Take Time for Yourself

By Denise D. Aggen

View similar stories.

Respite care. How many parents really take advantage of this short-term break from caring for a family member with cerebral palsy? As a single mother, I was offered this many times, but never took advantage of it. My main concern was who would stay with my daughter with CP and could I trust them. My family is not able to help me with my daughter, so I have to depend on outside care for help.

With the demands of the world, you find that your plate gets too full and your shoulders begin to ache from all of the stress. Taking one evening, one day, or one weekend can help with that stress. I try to take one weekend every couple of months and do something for myself. I have a caregiver that stays with my daughter at my house for the weekend, and I plan time away.

Recently, I have found a little remote lodge and retreat in a country side location in Idaho about two hours away from my home. I rented a cabin with my own screened in porch and personal hot tub. This was located directly next to a creek in a beautiful area full of trees and peacefulness. Now you do not have to go to the extreme of traveling far away or going to an expensive retreat. Maybe plan a weekend with a friend and go sightseeing, or stay in a nice hotel suite and catch a movie. Anything that you can do that does not require you to have any responsibilities of taking care of anyone else but yourself is the whole point of respite care.

Once when I took one of my weekends away, I signed up for a watercolor painting class in a mountain location. The drive there was beautiful and the fresh mountain air was relaxing. I came back home relaxed and excited about learning something new. Finding a craft or a hobby can help with decreasing any stress that one may feel. Finding that one thing that you truly enjoy will help put a smile on your face and take the stress out of your body.

What makes you happy? What are some of the things that you like to do that help you to relax? Are there any hobbies or crafts that you have always wanted to try, but have just never found the time to do? Take that respite care time and relax. Taking care of yourself is important, because you want to be able to be healthy so you can be around to take care of your special someone with cerebral palsy. Be happy. Make it fun.

About the Author

Denise D. Aggen is a single mother of two daughters who are 23 and 16. Her oldest daughter has cerebral palsy. She is a blogger and writer and is currently working on her Bachelor of Science degree in Psychology. She keeps a blog about raising a child with disabilities and a personal blog about “random things.”

Join Our Family

Gray Matter Grows in Brains of Children with Cerebral Palsy Following Therapy, Study Finds

noreply@blogger.com (Anonymous) — Wed, 24 Apr 2013 16:56:00 +0000

Gray Matter Grows in Brains of Children with Cerebral Palsy Following Therapy, Study Finds

BIRMINGHAM, Alabama — What’s a little gray matter between researchers?
A lot, it seems, as University of Alabama at Birmingham scientists become the first to show that a certain type of rehabilitation can remodel the brains of children by adding gray matter.
The findings are published today in the journal Pediatrics.

The study focused on 10 children who were given Constraint-Induced Movement (CI) therapy over a course of three weeks. One MRI was taken three weeks before the therapy; one right before therapy started; and the last one after it was over, said Chelsey Sterling, a graduate student in medical psychology and first author of the study.

“Following therapy we saw increases in the kids’ gray matter in the sensorimotor cortices and in the hippocampus,” Sterling said. “We don’t know exactly the cause, but it is correlated with improvements in motor skills.”

Gray matter is part of the central nervous system and is made up of neurons, glial cells and dendrites
One of the study’s co-authors, Gitendra Uswatte, described gray matter as the brain’s computer chips, and the therapy adds circuits to those chips.

Constraint-Induced Movement therapy was pioneered by Edward Taub in stroke rehabilitation. Taub is a university professor in the UAB Department of Psychology and co-author of this study.
CI therapy involves constraining the good limb so that the subject is forced to use the impaired limb.
For this study, researchers focused on children who had hemiparetic cerebral palsy, or CP that primarily affects one side of the body, Taub said.

The children’s good arm was placed in a cast to induce the restraint.
But the restrain aspect is only one small part of CI therapy, Taub said.
Successful therapy also involves the continuation of work at home involving family members to help the child focus on daily living activities: brushing their teeth, combing their hair and putting on shoes.
It’s not always easy, Taub chuckled, remembering when one child was asked to do something.
The child responded: “I have CP. Hasn’t anyone told you!”

While the study found a correlation between the increased gray matter and improved motor skills, it’s too early to which one caused the other, researchers said.
“The brain change could cause the motor improvement or the motor improvement could cause the brain change,” Taub said.
Uswatte is preparing to embark upon a study which may get closer to answering that question.
In the pending study, researchers would combine CI therapy with the administration of Prozac, or fluoxetine.

The study, he hopes, “will go some way to showing there is a causal relationship.”
Unfortunately, Uswatte said, the $2 million grant for the study is on hold due to sequestration – that series of automatic budget cuts directly caused by Congress not agreeing on a budget.
“There’s lots of research that is ready to go that can help people and help patients that can’t be done because of the stalemate over the budget,” Uswatte said.

Jack Carroll, 14-Year-Old ‘Britain’s Got Talent’ Contestant And Comedian, Is Our New Hero

noreply@blogger.com (Anonymous) — Wed, 24 Apr 2013 16:42:00 +0000

Jack Carroll, 14-Year-Old ‘Britain’s Got Talent’ Contestant And Comedian, Is Our New Hero

From The Huffington Post

“Dont worry, I know what you’re thinking: Harry Potter’s had a nasty quidditch accident.”
Fourteen-year-old Jack Carroll opened his audition for “Britain’s Got Talent” with this line, and the act that followed was easily one of the most memorable — and hilarious — of the popular British reality show. The young aspiring comedian has cerebral palsy and faced Simon Cowell and the other judges using a mobility aid on last week’s episode.

But the teen didn’t want his cerebral palsy to be what he called “the elephant in the room.” Instead, he used his short stand-up routine to poke fun at himself and the challenges he faces having a physical disability.

When the teen finished, he received a standing ovation from the audience and judges, and David Walliams called him a “comedy genius.” Watch Jack’s incredible performance in the video above.
“A lot of times in comedy, your weaknesses are your strengths,” he explained backstage, adding that his other strength was “bring[ing] joy to the world.”

We couldn’t agree more. Jack, you rock.

Was My Daughter’s Cerebral Palsy Preventable?

noreply@blogger.com (Anonymous) — Mon, 22 Apr 2013 20:56:00 +0000

Was My Daughter’s Cerebral Palsy Preventable?

By Ellen Robertson

View similar stories.

Every parent of a child born with a brain injury asks themselves, “Was my child’s birth injury preventable?” Very few find the answer to that question. Why? Many times, they’re convinced by the physicians and other medical personnel involved in their child’s delivery that “these things happen.” How many parents actually take the steps to investigate their child’s birth in spite of assurances that their child’s birth injury was “unavoidable?”

Taking on Goliath

I remember having a conversation with a family member several months after our daughter was born. My daughter suffered a severe neurological injury at birth due to “complications of unknown origins.” During this conversation with my cousin, he suggested that I should have my daughter’s birth investigated. He also suggested that if investigators found that my daughter’s injuries were “preventable,” that I should sue for damages. I reminded him that he was suggesting I take on Goliath! I would not be suing a small, home town hospital. I would be suing one of the largest entities in the free world! I laughed at his suggestion and asked him if he knew any really, really good lawyers who would take such a case! I dismissed his suggestion and our conversation.

Making the Call

Fast forward almost 3 years. While watching television one afternoon, a commercial came on. It was a malpractice law firm with an advertisement about cerebral palsy and birth injuries. I don’t know why, but I tuned in to that commercial, as voices from the past filtered through my mind. The conversation I had with the Attending Pediatrician the morning after my daughter’s birth was as clear in my mind at that moment as it had been that morning 3 years previous. The words “this was preventable” echoed through my mind. He had explained to me that, had the staff used a fetal heart monitor during my daughter’s delivery, they would’ve seen her distress and been able to physically stop the vaginal delivery and perform an emergency C-section, possibly preventing the severe birth injury she sustained.

As I copied down the 800 number, the doubts and inhibitions crept in. I remembered the conversation I had with my cousin and the disturbing reality of what I was contemplating started to set in. Did I really want to take on this fight? Would a lawyer even take our case? I didn’t know. I knew one thing though, we had nothing to lose! My daughter was severely brain injured and I wanted answers! It was already becoming evident, as early as 6 months of age, that my daughter’s brain injury was going to have a profound negative impact on her life. I wanted to know exactly what happened during those 40+ minutes that robbed my daughter of a normal life. I made that call.

Getting Answers

I had no knowledge of “statute of limitation” laws, but learned in my discussions with the lawyer that we were just 3 months away from the statute of limitations expiring. The resulting investigation by our lawyer provided the answers I needed. It was found that my daughter’s birth injury was the result of gross negligence on the part of the medical staff involved in her delivery. The negligence was such that our lawyer told us he was prepared to take our case to the Supreme Court if we had not won. As it turned out, we did win the case, and the ensuing settlement helped to provide a level of care and quality of life for our daughter that would not have been possible otherwise.

If your child was recently diagnosed with a neurological injury that you suspect occurred during their birth and you don’t have the answers you seek, MAKE THAT CALL. It may make the difference between you having to fight for services for your child their entire life, or being able to provide all the services and interventions they may need without government restraints or restrictions.

Join Our Family

Margaret Jones Conference on Cerebral Palsy Forum

noreply@blogger.com (Anonymous) — Fri, 19 Apr 2013 18:32:00 +0000

Do you live in Southern California? Interested in trying out XBox technology for our CP kids? On Saturday, April 20, a family forum will be held at UCLA Santa Monica Medical Center where you will be able to play with this new technology. CP Family Network has been watching this project and provided support for the CP Research Foundation and UCLA to build this technology. Make your reservation soon so you don’t miss out on this great opportunity!

http://www.cpfamilynetwork.org/blogs/margaret-jones-conference-on-cerebral-palsy-forum

Study Points To Treatment For Cerebral Palsy

noreply@blogger.com (Anonymous) — Fri, 19 Apr 2013 15:09:00 +0000

Study Points To Treatment For Cerebral Palsy

By Shaun Heasley

April 16, 2013

A new technique being heralded as a breakthrough could have significant implications for the treatment of cerebral palsy.

Researchers say they’ve found a way to transform ordinary skin cells into brain cells that are missing or damaged in individuals with cerebral palsy and related disorders like multiple sclerosis. In such conditions, so-called myelinating cells — which help the brain send instructions to the rest of the body — cannot naturally be replaced.

In a study published Sunday in the journal Nature Biotechnology, scientists say they have successfully used the technique to alter cells from mice and are now looking to test it on human cells.

The approach dubbed “cellular reprogramming” is particularly promising, researchers say, because it relies on fibroblasts, a type of cell found in skin and many organs, that is abundantly available.

“We are taking a readily accessible and abundant cell and completely switching its identity to become a highly valuable cell for therapy,” said Paul Tesar, assistant professor of genetics and genome sciences at Case Western Reserve School of Medicine and a senior author of the study.

Noninvasive Brain Stimulation in Adolescent Cerebral Palsy Treatment

noreply@blogger.com (Anonymous) — Mon, 15 Apr 2013 14:18:00 +0000

U of M Researchers Utilize Noninvasive Brain Stimulation in Adolescent Cerebral Palsy Treatment

April 11, 2013
By Brian Johnson

U of M assistant professor Bernadette Gillick, Ph.D., appeared on WCCO Radio to discuss how her lab, only one of two in North America, is testing a ground-breaking brain stimulation therapy on children with Cerebral palsy.

Gillick, who studies children who have had strokes before, during, or immediately after the time of birth, is implementing a new noninvasive technique on the child’s scalp to “excite” brain cells around the stroke area or equalize what’s happening in brain cells on either side of the brain to contribute to movement.

Her lab has recruited kids between the ages of eight and 18 years old, and so far, eleven children have met the stringent criteria to participate in the study with an end goal of having 20 children complete the study.

“I keep the criteria very strict because I want to keep the children as safe as possible,” Gillick said.

The brain stimulation treatment, which is painless, doesn’t have any severe side effects. In most cases, children haven’t reported any abnormalities.

“The most commonly reported side effect is a tingling sensation while brain stimulation is occurring,” Gillick said.

The therapy has shown positive effects on its participants. Kids who previously could not use their right arm are now able to brush their teeth with their right hand or even drive.

The most important thing when it comes to performing rehabilitation therapies with children, Gillick said, is to determine what their goal is.

The interview begins around the halfway mark.

To learn more about Gillick’s study please contact the Gillick Lab at 612-626-6415.

View original story.

Cerebral Palsy Diagnosis

noreply@blogger.com (Anonymous) — Thu, 11 Apr 2013 14:41:00 +0000

Cerebral Palsy Diagnosis

Many parents of children diagnosed with cerebral palsy are given little explanation of the cause, severity or future implications of the disorder. Surprisingly, many children may not receive a cerebral palsy diagnosis until they are school age, even though there may have been circumstances at birth that indicated risk of cerebral palsy. Many pediatricians take a “wait and see” attitude when parents present issues of delayed development.

Most cerebral palsy conditions are caused by lesions on the brain. These lesions may be caused by:

Injuries that occurred during pregnancy or birth (congenital cerebral palsy)
Injuries sustained in the months or years following birth (acquired cerebral palsy)

While symptoms range from mild to severe, the condition does not get worse as your child gets older. Depending on the level of severity however, a child may be at risk for complications related to cerebral palsy such as developmental delays, failure to thrive, joint contractures, scoliosis or seizures.

Cerebral Palsy Diagnosis

Spastic Cerebral Palsy

Known as the most common form of cerebral palsy, spastic cerebral palsy causes tightness in the muscles. Patients have stiff and jerky movements and will often have difficulty letting go of something in their hand. Many children with spastic cerebral palsy rely on medications, therapies or surgical interventions to manage their spasticity and prevent secondary complications.

Athetoid Cerebral Palsy

Athetoid cerebral palsy (fluctuating tone) is a neurological disorder resulting in a variety of movement disorders that result in involuntary and uncontrolled movements. A child may be shaky and unsteady and may make frequent, abrupt movements. Due to the mixed muscle tone involved in athetoid cerebral palsy, a child may experience difficulty with fine motor skills and maintaining torso control.

Ataxic Cerebral Palsy

A less common form of cerebral palsy is ataxic cerebral palsy. Ataxic CP disturbs a child’s sense of balance and depth perception, resulting in jerky, uncoordinated movements. A child with ataxic cerebral palsy may exhibit mixed tone and experience challenges with controlled movements.

Healthcare Concerns

Depending on the level of severity, cerebral palsy may result in a variety of healthcare concerns including inadequate oral motor skills and compromised ability to consume adequate fluids and nutrients. Untreated, severe oral motor dysfunction can result in dehydration and failure to thrive. Other healthcare concerns may include childhood osteoporosis, movement disorders, gastro- esophageal reflux disease (GERD), contractures of the extremities, and scoliosis.

Neuromuscular Issues

These affect the nerves that control voluntary muscles. “Neuro” indicates the origin of the disorder is at a neurological (brain) level. Left untreated, neuromuscular issues can severely impact a child’s quality of life and future development.

Seizures

Not all children with cerebral palsy suffer from seizures, just as not all children who experience seizures have cerebral palsy. Seizures result from abnormal and excessive discharges of nerve impulses originating from certain brain cells. Some of this excessive activity reaches the skeletal muscle fibers and triggers the violent contractions typical of many seizures. Seizures differ depending on the portion of the brain involved. Seizures that occur in only one hemisphere or part of the brain are known as “focal seizures.” Seizures that occur in both hemispheres are referred to as “generalized seizures.”

Range of Motion Issues

Range of motion (ROM) is the measurement used to describe the degree of flexion (how far it can bend) and extension (how far it can stretch or extend) in a joint. ROM is usually measured by degrees. Many children, especially those with spastic cerebral palsy, experience limited range of motion. Children with hemiplegia may experience limited range of motion involving the extremities on one side of their body. Children with quadrapalegia may experience range of motion issues with all extremities including the trunk, putting them at risk for spinal scoliosis.

Early Intervention

Receiving a cerebral palsy diagnosis allows parents to move forward and begin to pursue treatment and therapy options for their child. Early intervention is key to providing children with cerebral palsy the highest quality of life possible. For information about managing your child’s cerebral palsy, visit our Cerebral Palsy Treatments and Therapies page.

Selective Dorsal Rhizotomy: The Right Treatment for Spastic CP?

noreply@blogger.com (Anonymous) — Mon, 08 Apr 2013 17:15:00 +0000

Selective Dorsal Rhizotomy: The Right Treatment for Spastic CP?

By Lee Vander Loop
CP Family Network Editor
View similar stories.
The surgical procedure known as Selective Dorsal Rhizotomy (SDR) has gained considerable public attention within the cerebral palsy community. It is a neurosurgical procedure performed with the goal of improving motor function by decreasing spasticity in children with spastic cerebral palsy. Numerous news articles have published stories of children who have experienced life-altering benefits from SDR surgery, such as regaining the ability to walk after being confined to a wheelchair since birth.

What is Involved?

Spastic cerebral palsy, left untreated, can have a severe impact on a child’s development and can lead to serious musculoskeletal deformities. Spasticity is caused by abnormal nerve impulses traveling down the spinal cord. Selective Dorsal Rhizotomy aims to correct this through neurosurgery at the spinal cord level.
During an SDR procedure, surgeons identify and cut selected dorsal nerve roots in the spinal cord that are responsible for abnormal movement in the lower extremities. These nerve roots are identified using electrical stimulation. Identifying the correct nerve roots is vital. If nerve roots coming into the spinal cord from the skin, bladder or bowel are cut, then the patient may develop numbness or bladder or bowel incontinence.
Just as every child’s level and severity of spasticity is unique, every child’s surgery is also unique. Some children may only need 10% of the designated nerves cut where another may require a higher percentage for positive results.

Eligibility

There are strict criteria used to determine a child’s eligibility for Selective Dorsal Rhizotomy. A multi-team assessment is made which typically includes a physiotherapist, a pediatrician and surgeons. The procedure is usually recommended for young children with CP spastic diplegia without dyskinesia or ataxia. Additionally, children who are without significant cognitive disability and those with a walking capacity within reach are considered candidates. This is an extremely complex surgery, and like all surgeries, presents risks. Parents need to be made aware of all the factors involved in this potentially life-altering procedure.

Benefits of SDR

Reduces or eliminates the need for long term pharmacological intervention, such as muscle relaxants and antispasmodic medications.
May offer immediate reduction in muscle tone in adductors, hamstrings and dorsiflexors with no recurrence of spasticity.
Reduced need for other orthopedic surgeries to correct joint contractures.

Risks of SDR

The procedure is irreversible.
Post operative weakness and loss of some motor ability have been noted. Intense physical therapy is required to regain strength and mobility.
May lead to deterioration in walking ability or bladder function, or later complications including spinal deformity.
Commonly reported post-op side effect includes abnormal sensitivity of the skin on the feet and legs lasting up to 6 weeks.
Prolonged physical therapy (specifically physiotherapy) and aftercare is required.
Additional surgery may be required.
The full benefits of SDR may not be realized until up to a year after the surgery.
Possibility of excessive weight gain. (I found this weight gain side effect to be true with my own daughter. As a result of significantly reducing her spasticity with ITB therapy (Intrathecal Baclofen Pump) she gained 40 lbs in the first year after the pump placement!)

Is SDR Right for Your Child?

If you believe your child may be a candidate for SDR surgery, speak with your child’s pediatrician, therapists, orthopedic specialist and neurologist. Be prepared for the long haul. Gather all the information you can. Make lists of every question that comes to mind.
As with any major surgery, there are risks and threat of complication. Do the research to ask the right questions!As you research, write down questions and concerns that you encounter in your reviews. Think of all the details of pre-op, the initial surgery, post-op, long term rehab, therapies, pain management, educational needs and adaptations, mobility, assistive technology needs post-op, and other issues of importance that may come to mind. Remember the only “dumb question” is the one you don’t ask!
Further Reading:
Long-term Outcomes Five Years After Selective Dorsal Rhizotomy
Selective Dorsal Rhizotomy
Growth in Children with Cerebral Palsy during Five Years After Selective Dorsal Rhizotomy: A Practice-based Study
About Selective Dorsal Rhizotomy

Join Our Family

Learning to Embrace Life’s Little Moments

noreply@blogger.com (Anonymous) — Thu, 04 Apr 2013 14:51:00 +0000

Learning to Embrace Life’s Little Moments

By Julie Ufema
View similar stories.
The holidays brought me an unimaginable gift this year. One that I never could have anticipated.
My Mom drove in from Maine and was able to join me as we volunteered to be ‘room mothers’ for my son Dane’s Christmas party. She was thrilled. I, admittedly, was apprehensive to say the least.
Earlier this year I was able to spend a day in the life of a kindergartner when my son’s home health aide called off sick, and although an invaluable experience, by the end of the day I was exhausted and happy to head home. But this would only take a couple of hours, and was a party to boot! I love a good party. How tough could it be?

Let the Party Begin

We walked into the classroom and all heads turned in our direction. Everyone now knew that I was Dane’s mom, an avid, amateur photographer and always willing to do something slightly unorthodox to meet my son’s special needs – two things that five-year-olds find highly entertaining.
The ‘head’ room mom announced that we would be making a Christmas ornament, reading a story and then playing some games. That seemed easy enough.
My mom and I set about opening up Popsicle sticks, squirting glue and sticking googly eyes where they belonged. Dane’s snowman looked like it was melting, but he’s never been one to follow the rules and I have never been one to make him.
The story was delightfully uneventful. The children all sat ‘crisscross-applesauce’ and listened with bated breath to find out if ‘Grumpy Santa’ would snap out of his funk and finish delivering his toys to all the good little girls and boys.

Game Time

Next up – the games! Dane squealed with delight and clapped his hands. A moment of terror swept over me. What games? How hard could they be? Dane has cerebral palsy, limited use of his hands and is in a wheelchair. It just hadn’t dawned on me that these ‘games’ might fall slightly outside of his wheelhouse. I so often forget that Dane is any different than anyone else that reality sometimes sneaks up on me.
And boy was this one a doozy! We were to push a Styrofoam ‘snowball’ the length of the classroom (and back!), with a wooden spoon, in an all-out, head to head relay race. When it came time to split into teams, I tried inconspicuously to hang back with Dane. Not a chance. The excited students pleaded with us, “Come on Dane!” “Dane, come be on our team!” “No, he’s closer to our side. He should be on our team.”
As it had time and time before, my heart sank. I thought quickly, grabbed a piece of paper, rolled it up into a cone and handed it to Dane. “Here,” I said confidently.“You can be the director!”
My mother and the aides looked relieved. That should work for sure! Dane had definitely inherited my bossy pants gene and this should totally satiate his need to participate.
No dice. Out came the lip.
Before the first tear could fall I hurriedly unbuckled him from his wheelchair, mustered up all the strength I could, grabbed my 4-foot, 50 lb. baby boy and carried him over to the end of the line.

Part of the Team

Our turn came. I grabbed the wooden spoon, swooped down towards the ‘snowball’ and gave it all we had. I managed to give the ball one pretty decent whack, and with a couple more awkward and labored dips to the floor, we were just able to stumble across the finish line, dead last, to a raucous round of applause.
As I looked around the room I saw laughter, empathy and maybe just a little disbelief. I looked down at Dane and he grinned ear to ear. Panting, I trudged back over to my mom who quickly pushed Dane’s chair into position. She was smiling too.
She leaned into me, “We could see your bum.” She giggled.
“Won’t be the last time!” I laughed.
And it won’t be. I decided that from that day forward, I would attend all of Dane’s parties, not to protect him from disappointment, but to celebrate the moments that pass too quickly, often unseen by the adult eye. And if I have to show a little bum in the process, so be it. I’d rather teach my kids that to participate and risk looking foolish is always better than not participating at all.

About the Author

Julie Ufema lives in Central PA with her husband, Jason, in-laws and two sons. After deciding to start a family, Julie and Jason found themselves plagued with fertility problems. They had just about given up when their first son, Jett, was conceived. Julie and Jason were quickly blessed with a second son, Dane. Within days of Dane’s birth they received the shocking news that Dane had cerebral palsy and Jett was diagnosed with autism. Julie has written a narrative memoir chronicling the ups and downs of raising two children with special needs and continues to write and make films as time allows. Find her at www.julieufema.com and www.facebook.com/JulieUfemaWriter.

Join Our Family

Urge Congress to Fund Cerebral Palsy Research

noreply@blogger.com (Anonymous) — Mon, 25 Mar 2013 15:17:00 +0000

Cerebral palsy affects more children than muscular dystrophy, multiple sclerosis, cystic fibrosis or childhood leukemia. But CP receives only a fraction of the government research funding these other disorders receive. I wish I knew why. I only know it isn’t right.

Not that these organizations deserve any less research support. I just believe cerebral palsy should warrant more attention. In the U.S., 1 in every 303 eight-year-olds has cerebral palsy. The odds are 1 in every 270 among African-American children. Yet, the cause of 80% of CP is still unknown.

I work with families of children with cerebral palsy on a regular basis. I know what kind of challenges they face, and what it costs to provide children with the kinds of therapies and services they will need the rest of their lives. I present these numbers in courts and around settlement tables. I am well aware that science has not found a way to prevent most cerebral palsy, or to cure it.

Without more research funding, it is unlikely this will occur anytime soon, which is a travesty. Dedicated research funding is practically nonexistent, according to the Academy for Cerebral Palsy and Developmental Medicine. The Centers for Disease Control and Prevention (CDC) has no specific funding for CP, and funds dedicated for CP by the National Institutes of Health (NIH) (only $22million for this year) is not for innovative, curative research, the academy notes.

Today is National Cerebral Palsy Awareness Day. Do your part to urge Congress to dedicate more funding to preventing, curing and developing effective therapies for cerebral palsy. Contact your elected officials. The 800,000 Americans who are living with CP today are counting on you.

For more information about the causes of cerebral palsy, read my blog “Your Child’s Cerebral Palsy: Preventable Mistake or Not?“

Let’s Talk About Cerebral Palsy Myths

noreply@blogger.com (Anonymous) — Thu, 21 Mar 2013 17:43:00 +0000

In acknowledgement of National Cerebral Palsy Awareness Day on March 25, I wanted to talk about some common CP myths: children with cerebral palsy are mentally disabled, will never walk or talk, can never live independent lives, and developed cerebral palsy from an unknowable and unpreventable neonatal condition.

The thing about myths is that they originate in a grain of truth. Although cerebral palsy, by definition, is a disorder that affects motor function, some children with CP also experience damage to the part of the brain that controls thinking. They suffer from lifelong cognitive disabilities. Others, because of the extent of damage to the area of the brain that governs movement, will need a walker or wheelchair to get around, and may need technical aids to help with speech. And yes, the reason why some children develop CP is never determined.

But, the bigger truth about cerebral palsy is that it is a disorder characterized by a range of function, from mild to severe. Many children with CP are very bright. I read a story recently about Mike Berkson, a college student with CP who compares himself to a blind man: his lack of one sense has given him heightened capabilities in other areas; in his case, diminished motor capacity has led to heightened mental acuity. Berkson, while confined to a wheelchair, has made headlines with his insights into friendship and living as a person with disabilities.

By far the most common challenge faced by a child with CP is learning to walk, and then to walk with a steady gait. But many do, to the extent that you wouldn’t know they were ever impaired. This goes for talking, too. Just Google “famous people with cerebral palsy” and you’ll find a long list of actors, authors, artists and comedians.

The last great myth about cerebral palsy is that it is never the result of doctor, nurse or hospital error. According to the medical community, the origin of cerebral palsy is mostly a mystery, but never anyone’s fault. This argument becomes full-throated when it comes to evidence that labor and delivery staff misinterpreted tracings from an Electric Fetal Monitor (EFM) showing the fetus was in trouble and failed to take the required action.

I regularly disprove this myth and others in court. (You can read more about this issue in my article “How Electronic Fetal Monitoring Can Prevent Cerebral Palsy” that first appeared in CP Magazine.) I present evidence that shows if a doctor or nurse had followed approved medical procedure, a lack of oxygen to the fetus and brain injury would not have occurred and the child would not have cerebral palsy. A winning verdict or settlement provides the family with the money they need to care for a brain-injured child the rest of his or her life, which is the fair and just outcome.

Join me in cerebral palsy “myth busting” this week. Wear a green ribbon to show your support of the cerebral palsy community.

Howard Janet has been representing plaintiffs in complex civil litigation for more than 30 years in the areas of medical malpractice, birth injuries, “whistleblower” lawsuits, and environmental litigation. Best Lawyers in America® honored him as the 2012 Lawyer of the Year–Personal Injury, Baltimore, MD. READ FULL BIO