Special Kids - Celebrating The Uniqueness of ALL Children

Premature Birth is Still on the Rise

The March of Dimes speaks up for babies every day -- and today on November 12, Prematurity Awareness Day, we make sure even the smallest babies are heard.

As a member of an Ambassador Family for the March of Dimes, I encourage you to please sign the online Petition for Preemies NOW and join the other 92,000 people who want to encourage their elected officials to make a difference in the lives of every family who desires children.

The March of Dimes has released a Premature Birth Report Card for the nation and every state. We scored a "D" overall because the number of babies born too soon in our country is 60 percent higher than the U.S. Department of Health and Human Services' Healthy People 2010 objective of 7.6 percent. State-by-state grades are also available in the Report Card. Visit marchofdimes.com and find out how your state measures up.

The only state to earn a “B” was Vermont.  Eight others earned a “C,” 23 states earned a “D,” and 18 states plus Puerto Rico and the District of Columbia got failing grades of “F.”   Pennsylvania, where I reside, scored a "D."

 “It is unacceptable that our nation is failing so many preterm babies,” said Dr. Jennifer L. Howse, president of the March of Dimes. “We are determined to find and implement solutions to prevent preterm birth, based on research, best clinical practices and improved education for moms.”

For the past few weeks, the March of Dimes has been asking everyone to sign their online Petition for Preemies and help  send a message to our newly elected local and national officials. Thousands of caring people have already responded. If you were one of them, thank you for your support! If you missed it, go to marchofdimes.com/petition. Don't forget, you can sign up for advocacy alerts to make sure you won't miss any opportunities in your area and nationally.

You can help by sending this message along to family and friends!

About Cerebral Palsy

Cerebral palsy--also known as CP--is a condition caused by injury to the parts of the brain that control our ability to use our muscles and bodies. Cerebral means having to do with the brain. Palsy means weakness or problems with using the muscles.

Often the injury happens before birth, sometimes during delivery, or soon after being born. CP can be mild, moderate, or severe. He or she may need a special leg orthotics or a cane. More severe CP can affect all parts of a child's physical abilities. A child with moderate or severe CP may have to use a wheelchair and other special equipment, such as a walker or canes/crutches. Sometimes children with CP can also have learning problems, problems with hearing or seeing (called sensory problems), or intellectual disability. Usually, the greater the injury to the brain, the more severe the CP. However, CP doesn't get worse over time, and most children with CP have a normal life span.

How Common is CP?

About 500,000 people in America have some form of CP. Each year 8,000 infants and nearly 1,500 preschool-age children are diagnosed with CP.

What Are the Signs of CP

There are three main types of CP:

• Spastic CP is where there is too much muscle tone or tightness. Movements are stiff, especially in the legs, arms, and/or back. Children with this form of CP move their legs awkwardly, turning in or scissoring their legs as they try to walk. This is the most common form of CP.
• Athetoid CP (also called dyskinetic CP) can affect movements of the entire body. Typically, this form of CP involves slow, uncontrolled body movements and low muscle tone that makes it hard for the person to sit straight and walk.
• Mixed CP is a combination of the symptoms listed above. A child with mixed CP has both high and low tone muscle. Some muscles are too tight, and others are too loose, creating a mix of stiffness and involuntary movements.

Other terms used to describe the different areas of the body that can be affected by CP include:

• Diplegia--This means only the legs are affected.
• Hemiplegia--This means one half of the body (such as the right arm and leg) is affected.
• Quadriplegia--This means both arms and legs are affected, sometimes including the facial muscles and torso.

What About Treatment

With early and ongoing treatment the effects of CP can be reduced. Many children learn how to get their bodies to work for them in other ways. For example, one infant whose CP keeps him from crawling may be able to get around by rolling from place to place.

Children younger than three years old can benefit greatly from early intervention services. Early intervention is a system of services to support infants and toddlers with disabilities and their families. For older children, special education and related services are available through the public school to help each child achieve and learn.

Typically, children with CP may need different kinds of therapy, including:

• Physical therapy (PT), which helps the child develop stronger muscles such as those in the legs and trunk. Through PT, the child works on skills such as walking, sitting, and keeping his or her balance.
• Occupational therapy (OT), which helps the child develop fine motor skills such as dressing, feeding, writing, and other daily living tasks.
• Speech-language pathology (S/L), which helps the child develop his or her communication skills. The child may work in particular on speaking, which may be difficult due to problems with muscle tone of the tongue and throat.

The child may also find a variety of special equipment helpful. For example, braces (also called AFOs) may be used to hold the foot in place when the child stands or walks. Custom splints can provide support to help a child use his or her hands. A variety of therapy equipment and adapted toys are available to help children play and have fun while they are working their bodies. Activities such as swimming or horseback riding can help strengthen weaker muscles and relax the tighter ones.

New medical treatments are being developed all the time. Sometimes surgery, Botox injections, or other medications can help lessen the effects of CP, but there is no cure for the condition.

What About School

A child with CP can face many challenges in school and is likely to need individualized help. 

For children up to age three, services are provided through an early intervention system. Staff work with the child's family to develop what is known as an Individualized Family Services Plan, or IFSP. The IFSP will describe the child's unique needs as well as the services the child will receive to address those needs. The IFSP will also emphasize the unique needs of the family, so that parents and other family members will know how to help their young child with CP. Early intervention services may be provided on a sliding-fee basis, meaning that the costs to the family will depend upon their income.

For school-aged children, including preschoolers, special education and related services will be provided through the school system. School staff will work with the child's parents to develop an Individualized Education Program, or IEP. The IEP is similar to an IFSP in that it describes the child's unique needs and the services that have been designed to meet those needs. Special education and related services, which can include PT, OT, and speech-language pathology, are provided at no cost to parents.

In addition to therapy services and special equipment, children with CP may need what is known as assistive technology. Examples of assistive technology include:

• Communication devices, which can range from the simple to the sophisticated. Communication boards, for example, have pictures, symbols, letters, or words attached. The child communicates by pointing to or gazing at the pictures or symbols. Augmentative communication devices are more sophisticated and include voice synthesizers that enable the child to "talk" with others.
• Computer technology, which can range from electronic toys with special switches to sophisticated computer programs operated by simple switch pads or keyboard adaptations.

The ability of the brain to find new ways of working after an injury is remarkable. Even so, it can be difficult for parents to imagine what their child's future will be like. Good therapy and handling can help, but the most important "treatment" the child can receive is love and encouragement, with lots of typical childhood experiences, family, and friends. With the right mix of support, equipment, extra time, and accommodations, all children with CP can be successful learners and full participants in life.

Tips for Parents

• Learn about CP. The more you know, the more you can help yourself and your child. See the list of resources and organizations at the end of this publication.
• Love and play with your child. Treat your son or daughter as you would a child without disabilities. Take your child places, read together, have fun.
• Learn from professionals and other parents how to meet your child's special needs, but try not to turn your lives into one round of therapy after another.
• Ask for help from family and friends. Caring for a child with CP is hard work. Teach others what to do and give them plenty of opportunities to practice while you take a break.
• Keep informed about new treatments and technologies that may help. New approaches are constantly being worked on and can make a huge difference to the quality of your child's life. However, be careful about unproven new "fads."
• Learn about assistive technology that can help your child. This may include a simple communication board to help your child express needs and desires, or may be as sophisticated as a computer with special software.
• Be patient, keep up your hope for improvement. Your child, like every child, has a whole lifetime to learn and grow.
• Work with professionals in early intervention or in your school to develop an IFSP or an IEP that reflects your child's needs and abilities. Be sure to include related services such as speech-language pathology, physical therapy, and occupational therapy if your child needs these. Don't forget about assistive technology either!

Source: The National Dissemination Center for Children with Disabilities

WWBOD? Obama and Special Needs Kids

We congratulate President-elect Barack Obama. Though many parents of children with special needs felt that they had a "friend" in the White House if Governor Sarah Palin was elected alongside Sen. McCain, we are confident of that  many of the policies that the new President will initiate will bring change to the poor performance and inaction of the current administration on vital children's issues.

I am not solely blaming President Bush. Both parties lack of meaningful progress with regard to children's health and education issues will impact present and future generations.

Based on federal data, 13.9% or approximately 10,000,000 U.S. children have special health care needs. This figure accounts for almost 22% of all U.S Households - and growing.

Special Education has been a federal issue since 1975, when President Ford signed the law now known as the Individuals with Disabilities Education Act -- IDEA. While IDEA has been improved and strengthened over the years, its primary funding commitment has never been met. Congress set a maximum target for the federal contribution to special education spending equal to 40 percent of the estimated excess cost of educating children with disabilities. Thus, if the program were "fully funded," the states would receive their maximum grants, calculated at 40 percent of the national average per pupil expenditure (APPE) times the number of children with disabilities served in the school year 2004-2005, adjusted for population changes. Under the act, the count of children with disabilities cannot exceed 12 percent of the state’s total school population. 

For FY 2008, IDEA federal funding covered 17.1 percent of the estimated excess cost of educating children with disabilities, the same as in FY 2007 and less than in FY 2006 when federal funding covered 17.7 percent of the cost. The FY 2006 funding represented a significant decrease from the FY 2005 appropriation, which covered 18.5 percent of the excess cost—the first decrease in the federal special education contribution since FY 1996. IDEA Part B "full funding" for FY 2008 would have amounted to approximately $25.47 billion, or roughly $14.54 billion more than was actually appropriated. The shortfall in IDEA funding has been assumed by the states and local school districts

The President of the United States is often judged on "The First 100 Days" of his term. I hope that among his priorities, and there are many, he addresses these key "special needs" issues:

• Special Education and IDEA
• Childrens Health Care and Insurance Reform
• Increased Funding for Autism Research

President-Elect Obama has offered his policies on a variety of related issues. We certainly hope that his promise to create and open dialogue with the American people is a promise kept.

Feel free to read the following issue statements:

• SUPPORTING AMERICANS WITH AUTISM SPECTRUM DISORDERS
• CHILD ADVOCACY
• EDUCATION
• AMERICANS WITH DISABILITIES

Following this week's historic election, Children's Defense Fund President Marian Wright Edelman commented in an open letter, "Now the real hard work begins. As President-Elect Obama charts his course during this transition period, I urge him to place our nation's children at the center of his administration’s priorities. We must fight to create a level playing field for every child in every corner of America and invest in our human capital, which will determine the vibrancy of America`s leadership in the new century. It is a new day in America, and it is a time for all of us to step forward together for children since they own the future"

Research Shows Rehabilitation Benefits of Using Nintendo Wii

A University of Medicine and Dentistry of New Jersey (UMDNJ) case study focused on use of the Nintendo Wii for rehabilitation of a teen with cerebral palsy is believed to be the first published research showing the physical therapy benefits resulting from use of the wildly popular gaming system.

“Use of a Low-Cost, Commercially Available Gaming Console (Wii) for Rehabilitation of an Adolescent with Cerebral Palsy,” an article reporting the case study results, will be published in the October print issue of the American Physical Therapy Association’s journal Physical Therapy. It is available now online for journal subscribers.

In this case study, the patient was a 13-year-old male with spastic diplegic cerebral palsy. In a school-based setting, he participated in 11 training sessions, over a four-week period, using the Wii while continuing to receive physical and occupational therapy. The sessions were each between 60 and 90 minutes long and used the Wii sports games software, which offers boxing, tennis, bowling, and golf. He trained in both standing and sitting positions.

“Improvements in visual-perceptual processing, postural control, and functional mobility were measured after training,” the researchers reported.

To the authors’ knowledge, this is the first published report on using the Wii for rehabilitation, though there have been numerous press reports about use of the Wii in clinical settings as well as some scientific articles on the physiological effects of using the Wii.

Karen Huhn, PT, MHS, and Phyllis Guarrera-Bowlby, PT, MEd, PCS, instructor and associate professor, respectively, at the UMDNJ-School of Health Related Professions (SHRP), and doctoral students Megan Borbely and Jenny Filler were researchers on the team led by Judith E. Deutsch, PT, Ph.D., professor and director of Research in Virtual Environments and Rehabilitation Sciences (Rivers) Lab in the Department of Rehabilitation and Movement Science at UMDNJ–SHRP.

Deutsch’s work during the last eight years has focused largely on virtual reality-based stroke rehabilitation. She helped to develop, in collaboration with colleagues at Rutgers University, two systems that consist of a combination of robots used to enter virtual environments. Individuals, post-stroke, use these robotic-virtual reality systems to perform different tasks designed to stimulate movement. The group has shown that this type of training translates to improved walking in the real world.

Considering the cost and time delay from development to testing to implementation of virtual reality systems, Deutsch wondered if use of the Nintendo Wii, a relatively low-cost, commercially available, interactive gaming system, could provide an alternative to the high-cost, high tech virtual reality rehabilitation robotic systems.

“This case study shows that the Wii may give us additional tools to complement the standard of care, perhaps make it more diverse,” Deutsch said.

While the Wii complements physical therapy, it will not replace standard of care (traditional) rehabilitation techniques, Deutsch said. “We have a sense that the Wii is going to be useful even though it was not specifically designed for rehabilitation. We’re really just learning the system’s possibilities as well as its limits.”

Eager to find out how applicable the Wii can be following encouraging results from the first study, Deutsch’s team is conducting another study using existing Wii games, including the Wii Fit, in rehabilitation for post-stroke patients. Deutsch said she also wants to explore the potential rehabilitation benefits for other populations, including persons with Parkinson disease.

The University of Medicine and Dentistry of New Jersey (UMDNJ) is the nation's largest free-standing public health sciences university.

MDA Telethon Breaks Record For Special Kids

Despite an uncertain economy and Hurricane Gustav pounding the Gulf Coast, contributions and pledges to the 43rd annual Jerry Lewis MDA Labor Day Telethon totaled a recordbreaking $65,031,393 — $1.2 million more than last year.

 

These contributions will enable the Muscular Dystrophy Association to fund research to find treatments and cures for muscular dystrophy and related diseases.

 

Funds also support hundreds of MDA medical clinics; send thousands of children to MDA summer camp; and provide assistance with the purchase of equipment such as wheelchairs and leg braces.

MDA National Chairman and Telethon star Jerry Lewis said he is grateful for the outpouring of support from Telethon viewers.

 

"Each year I tell myself, 'This has got to be it. There's no way we can do better.' Then, the following year, I'm astounded to see that generosity driven by love and compassion has a greater capacity than I thought possible," Lewis said. "I am awed and humbled by this response."

 

For the third year, the 21 ½-hour event originated from the South Point Hotel, Casino & Spa in Las Vegas. The show was broadcast to nearly 40 million viewers by some 180 television stations that comprise MDA's "Love Network." Millions more worldwide had access to the Telethon at www.mda.org via RealNetworks.

Veteran showman, MDA Board member and Telethon anchor Ed McMahon made his 42nd Telethon appearance.

 

The Telethon schedule included live interviews with families sharing their experiences living with a muscle-wasting disease and their hopes for the future. Other guests described the exciting progress being made in medical research to fight those diseases.

 

Viewers were entertained throughout the legendary extravaganza by a top-notch array of singers, dancers, musicians and comedians. Included in the lineup this year were Celine Dion, 3 Doors Down, Kid Rock, Sugarland, Ludacris, Tracy Lawrence, Menudo, Will Downing, Billy Bob Thornton, Jimmy Wayne, Lance Burton, Bo Bice, George Wallace, Gloria Gaynor, Joshua Bell, Maureen McGovern, Pat Monahan of Train, Ronn Lucas, Starship, Terry Fator, Tony Orlando and many more.

 

A highlight of the show was China''s Disabled People's Performing Arts Troupe, which performed selections from "My Dream," a musical dance performance created for the Beijing 2008 Olympic Games. The troupe brought 27 of its members, each of whom have vision, hearing or physical disabilities, from China to Las Vegas just for the Telethon.

MDA is a national voluntary health agency working to defeat muscular dystrophy and related diseases through programs of worldwide research, comprehensive services and far-reaching professional and public health education.

 

MDA's programs are funded almost entirely by individual private contributors.

 

Source: mda.org