Cerebral Palsy

Sixteen-year-old Matthew Walzer's heartfelt letter to Nike's CEO, Mark Parker, is quickly spreading across Twitter through the hashtag campaign #NikeLetter. Walzer posted the letter on his blog Tuesday afternoon, hoping to make Parker aware of a "great need" for supportive, easily-fastened shoes for people with cerebral palsy.

For most children, a clear sign that a ventriculoperitoneal (VP) shunt is not working is a painful headache. Because Braden could not communicate his pain to me, I quickly had to learn to look for other symptoms.

I am a twenty-eight-year-old woman with spastic Cerebral Palsy. This means that I have very tight muscles and heightened muscle tone, which makes walking difficult. As a result, I use a wheelchair to be mobile. By looking at me, the only way to tell there is something wrong is my wheelchair. Most who know me do not call attention to my physical limitations; they simply make accommodations to include me in whatever they may be doing at the time. I am a very smart and driven individual. If I were able to walk, there would be absolutely no difference in you or me.

Most children have a preconceived notion that every day of summer should be exciting and adventurous. Children with special needs are no exception. As parents, we feel an obligation to provide our children with memorable summer breaks, without breaking the bank! Determining how to manage that day-to-day challenge can be exhausting for parents of a special needs child, especially when you factor in possible accessibility issues that may arise for children in wheelchairs or with mobility challenges.

Many families raising a non-ambulatory child face the challenge of finding appropriate transportation when their child becomes wheelchair-dependent and can no longer be transported in a car seat. Parents struggle with questions of where to find financing, what vehicle to choose and what modifications are needed. The process can be overwhelming, but we have some suggested questions to ask and what to look for as you begin your search.

When a child with cerebral palsy is unable to attend school, parents may opt to have the school come to them. By law, Home and Hospital Teaching (HHT) is a program that must be offered to students who are unable to attend a regular school program due to a physical or emotional condition. Normally, these programs are offered for a short period of time, but in some cases are appropriate for long term education.

Dublin study assessing Sleep disorders in children with cerebral palsy

PubMed Abstract: OBJECTIVES: To thoroughly examine the literature dealing with life expectancy in children with cerebral palsy and mental retardation. This review paper comprehensively reviews the literature relating to survival in children with cerebral palsy and developmental disability. CONCLUSIONS: Literature review definitively shows that children with CP and DD have a diminished life expectancy, which can be assessed based on simple clinical examination findings.

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American Bar Association - Commission on Law and Again

U.S. Department of Health and Human Services - National Clearninghouse for Long-Term Care Information

Medicare.gov - Caregiver Information and Resources

"Welcome to the Long-Term Care Planning tool. The primary goal of this tool is to help you understand:What long-term care services are available, How much you can expect to pay for long-term care, and What financing options are available to support your long-term care costs. The results of the Long-Term Care Planning tool are general in nature and not intended to replace comprehensive financial and other long-term personal planning. This tool will ask between twelve and twenty questions and will then provide you with the long-term care results you need by comparing your answers to those of individuals with similar profiles."

"The primary purpose of this tool is to provide names, addresses, and contact information for suppliers that provide services or products under the Medicare program.

The Offician U.S. Government site for Medicare

"The mission of the American Music Therapy Association is to advance public awareness of the benefits of music therapy and increase access to quality music therapy services in a rapidly changing world

The Administration for Children and Families (ACF), within the Department of Health and Human Services (HHS) is responsible for federal programs that promote the economic and social well-being of families, children, individuals, and communities. ACF programs aim to achieve the following: *families and individuals empowered to increase their own economic independence and productivity; *strong, healthy, supportive communities that have a positive impact on the quality of life and the development of children; *partnerships with individuals, front-line service providers, communities, American Indian tribes, Native communities, states, and Congress that enable solutions which transcend traditional agency boundaries; *services planned, reformed, and integrated to improve needed access;*and a strong commitment to working with people with developmental disabilities, refugees, and migrants to address their needs, strengths, and abilities.

"Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Through our national network, we provide families tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care.

The Council for Exceptional Children (CEC) is the largest international professional organization dedicated to improving the educational success of individuals with disabilities and/or gifts and talents. CEC advocates for appropriate governmental policies, sets professional standards, provides professional development, advocates for individuals with exceptionalities, and helps professionals obtain conditions and resources necessary for effective professional practice.

The Association of Maternal and Child Health Programs is a national resource, partner and advocate for state public health leaders and others working to improve the health of women, children, youth and families, including those with special health care needs.