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.

Read more about HBO to Premiere MISS YOU CAN DO IT Pageant Doc on 6/24 – BWWTVWorld by tv.broadwayworld.com

Solar Powered Wheelchair Wins Award

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.

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.
 

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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.

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!

<iframe width="560" height="315" src="http://www.youtube.com/embed/XCupcga5TDc" frameborder="0" allowfullscreen></iframe>
 

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!
 

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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.

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

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Navigating the World in a Wheelchair

By Crystal McClure

View similar stories.

One of the greatest challenges an individual with a disability faces is the issue of accessibility. Even today, there are still many places that are not fully accessible to those with disabilities; specifically those who use wheelchairs. Wheelchair-friendly establishments continue to be the exception rather than the rule.

Accessibility in the Home

As a child, I was often unaware of how often my wheelchair made it difficult for me to visit certain places. My parents did everything they could to ensure that my wheelchair did not cause me to be left out of many life experiences. They made modifications where necessary so places and things were accessible. My dad built ramps into our house so I could enter and exit the house on my own. When I reached my teen years, he made sure the bathroom was modified so I could do things on my own. Each time my grandfather built a new home for himself and my grandmother, he always made sure that I could get through all doors and hallways inside the house. I am very grateful to my family for always keeping an eye out for accessibility issues, whether in the home or out in public.

When I became an adult and had the privilege of purchasing my own home, only minor modifications had to be made. A ramp was installed to allow me to enter and exit. My dad installed a new high rise toilet so I would be able to use the bathroom without the need for a toilet chair over the commode at all times. This has made living on my own so much easier.

Challenges of Public Restrooms

Often, one of the biggest frustrations for those who use wheelchairs is public restrooms. During my childhood, my mother had to lift me on and off the toilet. Most times we would use a regular stall, which meant the door would not shut because of my wheelchair. This made me very nervous and I would hold it or not be able to use the restroom even though I really needed to go.

Many times, public restrooms are not big enough to accommodate larger-than-average wheelchairs, and in some cases, are not even designed to accommodate a regular size chair. This has been my experience in restaurants and hotels. Just as when I was a child, I have been in restaurants where my wheelchair barely fit into the stall and I could not close the door. When faced with this obstacle, I request to speak to the manager and am often told the restroom meets the required code.

While I understand public places meet code by having the handrails and a wider stall, that does not always mean that it is accessible for someone in a wheelchair. In my personal experience, the handrails are of no use to me as they are up too high and too far away from the toilet. When I do try to use them, I end up pulling my wheelchair under them instead of being able to pivot my body as needed. This has also caused me to jam my knees under a toilet paper holder.

Another issue I have with restrooms is my wheelchair sliding across the floor when I transfer. I have fallen many times because of this. It is very difficult to transfer when the toilet is standard height. Hotel showers are also not wheelchair accessible in many cases. This means that unless the person has someone with them who can lift them safely in and out of the bathtub, they have to sponge bathe and wash their hair in the sink.

Simple Steps to Improve Wheelchair Accessibility

There are some things that can be done to help improve accessibility for wheelchairs in public restrooms. First, persons building the restroom should make sure the stall is big enough to accommodate any size wheelchair and even scooters. Next, place rubber non-skid mats in front of the toilets. This will help secure the wheelchair into place so that it does not roll out or away from the user when he or she is transferring. Finally, all toilets in handicap stalls should be higher than a standard toilet. This will also help with the ease of transferring and reduce the chance that a handicapped person will fall.

Often times, the main door to the restroom is heavy and difficult to open in a wheelchair. I have been in some restrooms where the main door had a push button for opening. This would benefit accessibility for the disabled in all restrooms. If these steps were taken to ensure accessibility for those in wheelchairs, more issues such as these would likely be noticed and addressed.

Speak Up

As the caregiver of a child with a disability, you have the right to speak up and bring accessibility issues to the attention of management. Do not be afraid to be that voice your child needs you to be! As they say, it only takes one person speaking up to make a change. So, let’s speak up and see a change made for the benefit of the wheelchair community.

Have you or your child had frustrating experiences with wheelchair accessibility? Do you have any creative solutions or suggestions? Let us know in the comments!

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Cerebral Palsy Forum Launch!

We are so excited to launch our new cerebral palsy forum, specifically designed to give the community a place to ask and answer questions about CP. Please take some time to sign up and share this important resource. Thank you all so much for being the community you are. Now go out there and keep spreading that positive vibe and amazing information!

http://www.cpfamilynetwork.org/cerebral-palsy-forum

Speech Therapy: Vital To Opening a Child’s World

By Lee Vander LoopCP Family Network Editor

Years ago, before the invention of augmentive communication devices, children who displayed an inability to communicate were assumed to suffer from severe developmental disabilities and treated as such.

Imagine the heartache and frustration of a child with sound cognitive abilities or mild to moderate learning disabilities trapped in their body as a result of their inability to communicate. Augmentive communication devices have opened doors and given new lives to many individuals, providing a means of speech communication for those who would otherwise have no means of expressing themselves and their needs. Thankfully, speech therapists and augmentive devices are common today and can help most any child communicate in some way with the world around him or her.

The Basics of Speech Therapy

Speech therapy is the treatment of communication disorders, regardless of the origin. Therapists that work in the field of communication disorders are known as speech therapists and speech-language pathologists. Therapy can consist of a series of exercises and drills to strengthen the muscles involved in speech, and improve oral motor skills needed for speech as well as swallowing. Speech therapy may also include sign language and the use of picture symbols or augmented and alternative communication devices.

Many children with cerebral palsy experience some level of challenge with speech. Their challenges could be due to cognitive delays as in the case of mental retardation and learning disorders, or may be the result of damage to the area of the brain that facilitates speech. The speech center of the brain is referred to as the Broca’s area and is located in the left side of the brain for right-handed and most left-handed people. Nerves from the Broca’s area lead to the neck and face and control movements of the tongue, lips, and jaw.

Children learn speech from parroting what they hear in their environment. Children with hearing disabilities also experience challenges with speech because they cannot clearly hear sounds they and those around them are making. Children with cerebral palsy and speech challenges also commonly suffer from feeding disorders. Therapy to strengthen speech muscles also greatly benefits eating and swallowing.

Issues Involving Specific Types of Diagnosis

With children diagnosed with spastic cerebral palsy, muscle tightness (hypertonia) may cause the tongue to constantly push up against the roof of the mouth, or palate, making speech all but impossible. Children diagnosed with hypotonia (low muscle tone) likewise would experience challenges with speech, since the muscles of the mouth and tongue work together to form sounds.

The tongue is the primary organ involved in speech. It is also the primary organ of taste, chewing and swallowing. In chewing, the tongue holds the food against the teeth; in swallowing, it moves the food back into the pharynx, and then into the esophagus when the pressure of the tongue closes the opening of the trachea, or windpipe. It also acts, together with the lips, teeth, and hard palate, to form word sounds. Early intervention in this area is vital to a child’s development.

What to Expect From Your Child’s Therapy/Therapist

Communication-Your child’s physical or speech therapist should be communicating openly with you as to what they are doing, what muscles they are working with and why they are taking the approach they have chosen. In the case of oral motor and swallowing skills, your child’s therapist should take every precaution to minimize the risk of choking and aspirating.

You should also expect the therapist to communicate with your child. Most young children are anxious and fearful with strangers. The therapist should be working and communicating with your child to win your child’s trust and confidence. Regardless of whether your child is capable of comprehension or capable of communication, the therapist should be treating your child with respect, patience and compassion. If you meet a therapist that treats your child like an OBJECT and not a human being, FIND ANOTHER THERAPIST!

Teaching-Your child’s therapist is not only working with your child, but should also be teaching you so that you can be consistent in your child’s care and contribute to help your child achieve and maintain goals.

Questions to Ask:

• Communication works both ways. You should be communicating any concerns and questions you have to the therapist. If necessary, keep a journal and note problems and challenges you see your child may be experiencing between therapy sessions.

• Ask the therapist what you can do between therapy sessions to help your child maintain their progress.

• Ask how often you should work with your child and the duration of each session.

• If your child has been prescribed adaptive or augmentive equipment, inquire as to how often you should use the equipment and the duration of each session.

Compassion and Patience-You have the right to expect compassion and patience from your child’s therapist. If you feel a therapist is being overly aggressive and seems to be traumatizing your child… STOP THEM. Effective therapy should not be traumatizing. This is contradictive and will result in your child relating therapy to pain.

Accountability-Your child’s therapist should have written goals. You should be provided with the results of the first assessment and goals the therapist hopes to achieve in addressing issues and challenges your child may be experiencing. The therapist should do periodic assessments and provide you with goals for improvement and notify you of progress or regression on a regular basis.

Coordination-You have the right to expect your child’s therapist to work with your child’s educators in developing your child’s Individual Education Program (IEP) and to be an active member of your child’s IEP team. In the case of a private physical therapist not associated with your child’s school, he or she should be communicating with your child’s teachers and involved in the IEP process to make sure everyone is working toward the same goals.

The therapist should also be coordinating and communicating with your primary care doctor about any needed adaptive equipment or communication devices, and should keep the doctor informed of your child’s progress or problems. If the therapist feels your child would benefit from a specific communication device or piece of adaptive equipment, it is their responsibility to communicate the need to the physician and to follow-up in obtaining the device.

Continuity of Care-You have the right to demand continuity of care for your child. This means that the same therapist works with and follows your child throughout the therapy process. Of course, this isn’t always possible, but it should be the goal of any agency you work for. If your therapist belongs to a group or agency and they are sending a different therapist with each session, find another agency. This is not acceptable.

Visit our website!

http://www.cpfamilynetwork.org

References

Scienceclarified.com

National Speech/Language Therapy Center

Health Science

Physical Therapy Basics, Rights and Cautions - Cerebral Palsy

Physical Therapy Basics, Rights and Cautions

By Lee Vander Loop

Some children with cerebral palsy require physical therapy. Some don’t. Once the diagnosis is made, and the type of cerebral palsy is determined, a team of health care professionals will work to identify specific impairments and needs, and then develop an appropriate plan to address the core disabilities that affect the child’s quality of life.

Physical Therapy is a branch of medicine directed at the rehabilitation of muscles and the muscular skeletal system.  Physical therapy helps improve mobility, and uses a variety of equipment and exercises to help patients achieve or improve abilities. There is no standard therapy that works for every individual with cerebral palsy.

Children who require physical therapy will be referred to a private therapy group and, when they’re older, also receive physical therapy at school. Therapists who work with children are called Pediatric Physical Therapists, and are accredited through theAmerican Physical Therapy Association.   Physical therapy programs use specific sets of exercises and activities to work toward two important goals: preventing weakening or deterioration of the muscles that aren’t being used (disuse atrophy), and keeping muscles from becoming fixed in a rigid, abnormal position (contracture).  Early detection and management of muscular problems is crucial in early childhood development.  If left untreated, muscular issues where cerebral palsy is concerned can lead to contractures and long- term debilitation, compromising your child’s ability to walk, bend, dress, and possibly degrading a child’s quality of life long term.

• Physical therapy, usually begun in the first few years of life or soon after the diagnosis is made, is a cornerstone of cerebral palsy treatment.
• Resistive exercise programs (also called strength training) and other types of exercises are often used to increase muscle performance, especially in children and adolescents with mild cerebral palsy.
• Daily exercise routines keep muscles that aren’t normally used moving and active and less prone to wasting away.  Exercise also reduces the risk of contracture, one of the most common and serious complications of cerebral palsy.

Children normally stretch their muscles and tendons as they run, walk, and move throughout the day.  This insures that their muscles grow at the same rate as their bones. But in children with cerebral palsy, spasticity prevents muscles from stretching.  As a result, their muscles don’t grow fast enough to keep up with their lengthening bones.  The muscle contractures that result can set back the gains in function they’ve made.  Physical therapy alone or in combination with special braces (called orthotic devices) helps prevent contractures by stretching spastic muscles.

What Parents Need to Know

• Not all children with cerebral palsy require physical therapy
• Although vital in some cases,  physical therapy alone may not be adequate in preventing contractures and complications of some movement disorders
• In the case of severe spastic cerebral palsy, the maximum benefits of physical therapy can only be realized when the muscle spasticity is addressed and reduced to the extent possible
• With cases of Ataxic or Athetoid cerebral palsy, physcal therapy is a vital tool in addressing muscle strengthening and range of motion issues.

Your Child’s Rights

You and your child have the right to certain expectations. The Model Practice Act for Physical Therapy developed by The Federation of State Boards of Physical Therapyaddresses the standards, rules, regulations and patient consumer rights in regard to physical therapy.

• Team approach –When working with your child’s physical therapist you should be made to feel like a part of a team.  It is a team approach between you, your primary care physician, the therapist and your child.
• Communication – Your child’s physical therapist should be communicating openly with you as to what they are doing, what muscles they are working with and why they are taking the approach they have chosen.  You should also expect the therapist to communicate to your child.  Most young children are anxious and fearful with strangers.  The therapist should be working and communicating with your child to win your child’s trust and confidence.  Regardless of whether your child is capable of comprehension or capable of communication, the therapist should be communicating with your child and treating your child with respect, patience and compassion. If you meet a therapist that treats your child like an object and not a human being, find another therapist.
• Teaching - Your child’s physical therapist is not only working with your child but should also be teaching you so that you can be consistent in your child’s care and contribute to help your child achieve and maintain goals in the absence of the therapist.

Questions to Ask

• Communication works both ways.  You should be communicating any concerns and questions you have to the therapist.  If necessary, keep a journal and note problems and challenges you see your child may be experiencing between therapy sessions
• Ask the therapist what you can do between therapy sessions to help your child maintain any progress realized
• Ask how often you should work with your child and the duration of each session
• If your child has been prescribed adaptive equipment, inquire as to how often you should use the equipment and the duration of each session
• Ask about what adverse side effects you should be aware of. For instance, in the case of adaptive or custom orthopedic equipment, AFOs, wheelchairs, standers and similar equipment, you should watch for any chaffing, pressure sores or skin break down indicating that an adjustment needs to be made.

Compassion and Patience

• You have the right to expect compassion and patience from your child’s therapist.  If you feel a therapist is being overly aggressive and seems to be traumatizing your child… STOP THEM.
• The term “No pain, No gain” DOES NOT apply to children with cerebral palsy.  Effective physical therapy should not be painful.  If a therapist is being overly aggressive and causing pain, this is contradictive and will result in your child relating therapy to pain.

Accountability

• Your child’s therapist should have written goals.  You should be provided with the results of the first assessment and goals the therapist hopes to achieve in addressing issues and challenges your child may be experiencing.
• In the case of Range of Motion (the extent to which a muscle/limb can be extended) the therapist should do periodic measurements to assess your child’s range of motion, and provide you with goals for improvement and notify you of progress or regression. Perhaps your child has contractures of his/her lower extremities and a range of motion of 60%. The therapist should provide you with goals for achieving a higher percentage of range and a time line for achieving those goals.

Coordination

• You have the right to expect your child’s therapist to work and coordinate with your child’s educators in developing your child’s Indepedent Education Program (IEP)and to be an active member of your child’s  IEP team.
• In the case of a private physical therapist not associated with your child’s school, your child’s therapist should be communicating with your child’s educators and involved in the IEP process to ascertain that the goals created are being worked on in your child’s educational setting.
• The therapist should also be coordinating and communicating with your primary care physician in obtaining physician’s orders for any needed adaptive equipment or devices and should keep the physician informed of your child’s progress or challenges.
• If the therapist feels your child would benefit from custom made orthopedic shoes (AFOs), or other adaptive equipment, it’s the responsibility of the therapist to communicate with the physician the need and to followup in acquiring custom equipment/devices deemed medically necessary.

Continuity of Care

• You have the right to demand, and the therapist has an obligation to provide, continuity of care in relation to your child’s therapy. Continuity of care means the same therapist works with and follows your child through out the duration of the therapy process until your child either no longer needs the therapy and has reached set goals, or it’s determined that your child has achieved the maximum benefits of the therapy.
• If your therapist belongs to a group and you’re finding they send a different therapist with each session, tell them this is not acceptable and if necessary, change agencies.

BE AWARE – Controversial physical therapies

Not all forms of physical therapy are considered effective for children with cerebral palsy.

• “Patterning” is a physical therapy based on the principle that children with cerebral palsy should be taught motor skills in the same sequence in which they develop in normal children.  In this controversial approach, the therapist begins by teaching a child elementary movements such as crawling — regardless of age – before moving on to walking skills. Some experts and organizations, including the American Academy of Pediatrics, have expressed strong reservations about the patterning approach because studies have not documented its value.
• Experts have similar reservations about the Bobath technique (which is also called “neurodevelopmental treatment”), named for a husband and wife team who pioneered the approach in England .   In this form of physical therapy, instructors inhibit abnormal patterns of movement and encourage more normal movements. The Bobath technique has had a widespread influence on the core physical therapies of cerebral palsy treatment, but there is no evidence that the technique improves motor control.  The American Academy of Cerebral Palsy and Developmental Medicine reviewed studies that measured the impact of neurodevelopmental treatment and concluded that there was no strong evidence supporting its effectiveness for children with cerebral palsy.
• Conductive education, developed in Hungary in the 1940s, is another physical therapy approach that at one time appeared to hold promise.  Conductive education instructors attempt to improve a child’s motor abilities by combining rhythmic activities, such as singing and clapping, with physical maneuvers on special equipment.  The therapy, however, has not been able to produce consistent or significant improvements in study groups.

Joint Contractures in Children with CP

By Drew Dillard

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Joint contracture is the abnormal and essentially permanent shortening of a muscle resulting in the loss of normal joint movement. It is an especially prevalent condition in patients suffering from spastic cerebral palsy. Learn how to recognize joint contracture in your child and what treatment and therapy options are available to help alleviate the condition.

Definition

Normal muscles work in pairs. When one contracts, the other relaxes. This allows for conventional movement in the desired direction. In children with spastic CP, because brain-to-muscle communication is compromised, muscles have a tendency to work against each other, thus inhibiting effective movement. Over time, the pathological result of this muscular conflict (hypertonic spasticity) is a tightening or shortening of the joint. When muscle fibers are shortened (dystonia), the nearby joint can remain fixed in one position.  This, in part, is what causes the abnormal gait and postures seen in some spastic CP patients.

Hands, wrists, elbows, shoulders hips, feet, the back and even the jaw can be affected. Sometimes it affects only one or two joints, but in more extreme cases it can affect nearly every joint in the body. Untreated, it can lead to extreme pain and frequent bone fractures. Although spastic CP is not thought to be a progressive disorder, as brain damage does not get worse over time, spasticity in muscles can increase over time.

Symptoms and Diagnosis

In children with spastic CP, the process of growth often acts against them, making contractures more problematic. Symptoms may include a loss of motion in one or more extremity, joint inflammation, abnormal movements, disrupted growth (especially longitudinal growth) or an inability to stretch.  Discomfort is another symptom, as pain can result even without voluntary joint movement.

A healthcare professional skilled in joint mobilization will be able to test your child for indications of restricted structures within the joint. They might use a goniometer to measure the motion capabilities of a particular joint or use X-rays to reveal visible decreases in joint space, which could be an indication of a tight, contracted joint.

Prevention

As with anything, early detection is key. The best way to increase and maintain joint elasticity and prevent joint contracture is through joint mobilization and stretching. This can best be done with the guidance of a qualified physical or occupational therapist. Your child’s treatment regimen will depend on the severity of the condition and the child’s prior physical development. The sooner physical therapy is introduced into the child’s routine the better, because once joint contracture has taken place, it cannot be stretched or exercised away.

All physical therapy for cerebral palsy patients should include activities and education aimed at improving flexibility, strength, mobility and function. Cerebral palsy patients suffer from increased muscle tone (in the correct use of the term, muscle tone is an unconscious, low-level muscle contraction while the body is supposedly at rest). Tight muscles are the enemy of CP patients.

A physical therapist can also work with a client on “positioning” (placing the body in a specific position to attain long stretches) or suggest or provide adaptive equipment. A good physical therapist will teach the care-giver how to continue exercising, stretching and positioning at home.

Newer techniques, such as aquatic-based rehabilitation, have achieved impressive results in recent years. In addition to its restorative and detoxifying properties, water provides buoyancy that makes aerobic and anaerobic exercises easier and, in many cases, safer. Some of the documented benefits include improved neuromuscular responses, better muscle synchrony and improved range of motion in joints.

Treatment

If joint contraction has taken place, physical therapy and therapeutic massage will remain major parts of the treatment. Anything that increases mobility, joint elasticity and muscle strength can prevent the contraction from worsening, prevent additional contractions and provide pain relief.

Other treatments that may get introduced include: casts or splints, medication, nerve blocks and electrical stimulation and/or surgery.

• Casts or Splints. Casts or splints can hold a body part in place in an effort to stretch the soft tissues surrounding an affected joint and keep it in a more functional position. They need to be examined and changed regularly to reassess joint position and avoid skin breakdown.
• Medications. Baclofen infusion, a relatively new procedure, involves inserting a pump into the abdomen that distributes baclofen (a muscle relaxant) to muscles, thus temporarily reducing spasticity. Another relatively new treatment involves botox (a muscle paralyzer) injections into overly tightened muscles. In successful cases, the botox was able to weaken the group of muscles and reduce spasticity for periods of up to 4 months.
• Nerve Blocks and Electrical Stimulation. Because the root problem in spasticity is muscles not working in tandem as they should, in some cases, opposing muscles can be alternately blocked (anesthetically numbed) while others are electrically stimulated. This treatment is usually combined with casting.
• Surgery. When a contracture is unresponsive to other treatments, it may become necessary for an orthopedic surgeon to surgically lengthen or release certain tendons or muscles to improve range of motion.

The treatment for spastic cerebral palsy can vary greatly depending on the condition and prior development of your child. Assembling and consulting with a treatment team, including physical therapist, pediatrician, physiatrist, neurologist and orthopedic surgeon will aid in the decision making process. Started early, a well-managed and determined therapy regimen can prevent joint contracture from ever occurring.

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