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Jen was born 11 weeks early and weighed only 2½ pounds. The doctors were surprised to see what a strong, wiggly girl she was. But when Jen was just a few days old, she stopped breathing and was put on a ventilator. After 24 hours she was able to breathe on her own again. The doctors did a lot of tests to find out what had happened, but they couldn’t find anything wrong. The rest of Jen’s time in the hospital was quiet, and after two months she was able to go home. Everyone thought she would be just fine.
At home, Jen’s mom noticed that Jen was really sloppy when she drank from her bottle. As the months went by, Jen’s mom noticed other things she didn’t remember seeing with Jen’s older brother. At six months, Jen didn’t hold her head up straight. She cried a lot and would go stiff with rage. When Jen went back for her six-month checkup, the doctor was concerned by what he saw and what Jen’s mom told him. He suggested that Jen’s mom take the little girl to a doctor who could look closely at Jen’s development.
Jen’s mom took her to a developmental specialist who finally put a name to all the little things that hadn’t seemed right with Jen–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, like Jen, soon after being born.
CP can be mild, moderate, or severe. Mild CP may mean a child is clumsy. Moderate CP may mean the child walks with a limp. He or she may need a special leg brace 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.
Sometimes children with CP can also have learning problems, problems with hearing or seeing (called sensory problems), or intellectual disabilities. 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.
Cerebral palsy occurs in approximately 2 per 1000 live births. This frequency rate hasn’t changed in more than four decades, even with the significant advances in the medical care of newborns (eMedicine, 2009).
There are four 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 form of CP occurs in 50-75% of all cases.
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. This form occurs in 10-20% of all cases.
Ataxic CP involves poor coordination, balance, and depth perception and occurs in approximately 5-10% of all cases.
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. (March of Dimes, 2007)
More words used to describe the different types of CP include:
Yes, there’s a lot of help available, beginning with the free evaluation of the child. The nation’s special education law, the Individuals with Disabilities Education Act (IDEA), requires that all children suspected of having a disability be evaluated without cost to their parents to determine if they do have a disability and, because of the disability, need special services under IDEA. Those special services are:
Under IDEA, children with CP are usually found eligible for services under the category of “Orthopedic Impairment.” IDEA’s definition of orthopedic impairment reads as follows:
…a severe orthopedic impairment that adversely affects a child’s educational performance. The term includes impairments caused by a congenital anomaly, impairments caused by disease (e.g., poliomyelitis, bone tuberculosis), and impairments from other causes (e.g.,cerebral palsy, amputations, and fractures or burns that cause contractures). [34 CFR §300.8(c)(9)]To identify the EI program in your neighborhood, ask your child’s pediatrician for a referral. You can also call the local hospital’s maternity ward or pediatric ward, and ask for the contact information of the local early intervention program. To access special education services for a school-aged child, get in touch with your local public school system. Calling the elementary school in your neighborhood is an excellent place to start.
Get to Know Your Parent Center!
You’ll also want to get in touch with the Parent Center that serves your state or a given region within the state. Every state has at least one such center. Parent Centers specialize in connecting parents and others with local resources and providing them with information and training on disability topics, such as what rights you and your child have under federal and state law, how to work with service providers and schools to support your child’s development and learning, the network of knowledge associated with your child’s disability, and much, much more.
To find your Parent Center: Visit our Find Your Parent Center page.
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. 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.
All of these are available as related services in both early intervention programs (for very young children) and special education (for school-aged children).
Children with CP may also find a variety of special equipment helpful. For example, braces (also called ankle-foot orthoses, or “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. It’s also important to understand that cerebral palsy is not contagious, not inherited, and not progressive. The symptoms will differ from person to person and change as children and their nervous systems mature. (Healthcommunities.com, 2007)
A child with CP can face many challenges in school and is likely to need individualized help. Fortunately, states are responsible for meeting the educational needs of children with disabilities.
As we’ve said, for children up to the 3rd birthday, 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:
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.
Learn about CP. The more you know, the more you can help yourself and your child. The resources and organizations listed at the end of this publication have a lot of information on CP to offer.
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!
Learn more about CP. The resources and organizations listed organizations listed at the end of this publication have a lot of information about CP to offer.
This may seem obvious, but sometimes the “look” of CP can give the mistaken impression that a child who has CP cannot learn as much as others. Focus on the individual child and learn firsthand what needs and capabilities he or she has.
Tap into the strategies that teachers of students with learning disabilities use for their students. Become knowledgeable about different learning styles. Then you can use the approach best suited for a particular child, based upon that child’s learning abilities as well as physical abilities.
Be inventive. Ask yourself (and others), “How can I adapt this lesson for this child to maximize active, hands-on learning?”
Learn to love assistive technology. Find experts within and outside your school to help you. Assistive technology can mean the difference between independence for your student or not.
Always remember, parents are experts, too. Talk candidly with your student’s parents. They can tell you a great deal about their daughter or son’s special needs and abilities.
Effective teamwork for the child with CP needs to bring together professionals with diverse backgrounds and expertise. The team must combine the knowledge of its members to plan, implement, and coordinate the child’s services.
Resources of More Information
Find an incredible wealth of information and connections at UCP, including the chapters working in your state and publications and resource pages for parents and professionals in English and in Spanish.
United Cerebral Palsy | 1.800.872.5827 | http://www.ucp.org/
Each of Us Remembers: Parents of Children with Cerebral Palsy Answer Your Questions
A 27-page guide from United Cerebral Palsy, 2013 edition
Medline’s Fact Sheet on CP | https://medlineplus.gov/cerebralpalsy.html
The CDC | Centers for Disease Control and Prevention 1.800.CDC.INFO | Information in English and Spanish. https://www.cdc.gov/ncbddd/cp/index.html
NINDS | National Institute on Neurological Disorders and Stroke | 1.800.352.9424 | Information in English and Spanish.
Woodbine House | 1.800.843.7323 | Visit this commercial publisher to connect with a book series on CP, including a guide for parents; a children’s book; and a guide to teaching motor skills to children with CP. Read more about these resources at: http://www.woodbinehouse.com/Cerebral-Palsy.220.127.116.11.htm
SOURCE ARTICLE: Center for Parent Information and Resources
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