NICHCY Disability Fact Sheet #2 June 2010
Jennifer’s Story
Jen was born 11 weeks Jen’s mom told him. He ability to use our muscles early and weighed only 2½ suggested that Jen’s mom and bodies. Cerebral means pounds. The doctors were take the little girl to a doctor having to do with the brain. surprised to see what a who could look closely at Palsy means weakness or strong, wiggly girl she was. Jen’s development. Jen’s problems with using the But when Jen was just a few mom took her to a develop- muscles. Often the injury days old, she stopped breath- mental specialist who finally happens before birth, some- ing and was put on a ventila- put a name to all the little times during delivery, or, like tor. After 24 hours she was things that hadn’t seemed Jen, soon after being born. able to breathe on her own right with Jen—cerebral again. The doctors did a lot palsy. CP can be mild, moder- of tests to find out what had ate, or severe. Mild CP may happened, but they couldn’t What is CP? mean a child is clumsy. find anything wrong. The rest Moderate CP may mean the of Jen’s time in the hospital Cerebral palsy—also child walks with a limp. He was quiet, and after two known as CP—is a condition or she may need a special leg months she was able to go caused by injury to the parts brace or a cane. More severe home. Everyone thought she of the brain that control our CP can affect all parts of a would be just fine. child’s physical abilities. A child with moderate or severe At home, Jen’s mom CP may have to use a wheel- noticed that Jen was really chair and other special sloppy when she drank equipment. from her bottle. As the months went by, Jen’s is the Sometimes children with mom noticed other things National Dissemination Center CP can also have learning she didn’t remember for Children with Disabilities. problems, problems with seeing with Jen’s older hearing or seeing (called brother. At six months, Jen NICHCY sensory problems), or intellec- didn’t hold her head up 1825 Connecticut Avenue N.W. tual disabilities. Usually, the straight. She cried a lot and Washington, DC 20009 greater the injury to the would go stiff with rage. 1.800.695.0285 (Voice / TTY) brain, the more severe the CP. When Jen went back for 202.884.8200 (Voice / TTY) However, CP doesn’t get her six-month checkup, [email protected] worse over time, and most the doctor was concerned http://nichcy.org children with CP have a by what he saw and what normal life span.
Disability Fact Sheet #2 (FS2) How Common is CP? loose, creating a mix of determine if they do have a stiffness and involuntary disability and, because of the Cerebral palsy occurs in movements.2 disability, need special approximately 2 per 1000 live services under IDEA. Those births. This frequency rate More words used to special services are: hasn’t changed in more than describe the different types of four decades, even with the CP include: • Early intervention | A significant advances in the system of services to • Diplegia—This means medical care of newborns.1 support infants and only the legs are affected. toddlers with disabilities What Are the (before their 3rd birth- • Hemiplegia—This means day) and their families. Signs of CP? one half of the body (such as the right arm and leg) is • Special education and There are four main types affected. related services | Services of CP: available through the • Quadriplegia—This public school system for • Spastic CP is where means both arms and legs school-aged there is too much muscle are affected, sometimes children, including tone or tightness. Movements including the facial muscles preschoolers (ages 3-21). are stiff, especially in the legs, and torso. arms, and/or back. Children Under IDEA, children with this form of CP move Is There with CP are usually found their legs awkwardly, turning Help Available? eligible for services under the in or scissoring their legs as category of “Orthopedic they try to walk. This form of Yes, there’s a lot of help Impairment.” We’ve included CP occurs in 50-75% of all available, beginning with the IDEA’s definition of orthope- cases. free evaluation of the child. dic impairment in the box The nation’s special educa- below. • Athetoid CP (also called tion law, the Individuals with dyskinetic CP) can affect Disabilities Education Act To access early interven- movements of the entire (IDEA), requires that all tion services for a child up to body. Typically, this form of children suspected of having his or her 3rd birthday, CP involves slow, uncon- a disability be evaluated consult NICHCY’s State trolled body movements and without cost to their parents to Resource Sheet for your state low muscle tone that makes it hard for the person to sit straight and walk. This form occurs in 10-20% of all cases. Definition of “Orthopedic Impairment” under IDEA
• Ataxic CP involves poor Under IDEA, cerebral palsy is considered an “orthopedic coordination, balance, and impairment,” which is defined as: depth perception and occurs ...a severe orthopedic impairment that adversely affects in approximately 5-10% of all a child’s educational performance. The term includes cases. impairments caused by a congenital anomaly, impair- • Mixed CP is a combina- ments caused by disease (e.g., poliomyelitis, bone tion of the symptoms listed tuberculosis), and impairments from other causes above. A child with mixed CP (e.g.,cerebral palsy, amputations, and fractures or has both high and low tone burns that cause contractures). muscle. Some muscles are [34 CFR §300.8(c)(9)] too tight, and others are too
NICHCY: 1.800.695.0285 2 Cerebral Palsy (FS2) (available online at: http:// such as dressing, feeding, the effects of CP, but there is www.nichcy.org/families- writing, and other daily living no cure for the condition. It’s community/states/). You’ll tasks. also important to understand find a listing for early inter- that cerebral palsy is not vention under the first • Speech-language pathol- contagious, not inherited, section, State Agencies. The ogy (S/L), which helps the and not progressive.3 The agency listed there will be child develop his or her symptoms will differ from able to put you in contact communication skills. The person to person and change with the early intervention child may work in particular as children and their nervous program in your community. on speaking, which may be systems mature.4 difficult due to problems To access special educa- with muscle tone of the What About tion services for a school- tongue and throat. School? aged child, get in touch with All of these are available your local public school A child with CP can face as related services in both system. Calling the elemen- many challenges in school early intervention programs tary school in your neighbor- and is likely to need indi- (for very young children) and hood is an excellent place to vidualized help. Fortunately, special education (for start. states are responsible for school-aged children). What About meeting the educational Children with needs of children with Treatment? CP may also find disabilities. a variety of With early and ongoing As we’ve said, for special equip- treatment the effects of CP children up to the ment helpful. can be reduced. Many chil- 3rd birthday, For example, dren learn how to get their services are braces (also bodies to work for them in provided through an called AFOs) other ways. For example, one early intervention system. may be used to hold infant whose CP keeps him Staff work with the child’s the foot in place when the from crawling may be able to family to develop what is child stands or walks. get around by rolling from known as an Custom splints can provide place to place. Individualized Family support to help a child use Services Plan, or IFSP. The his or her hands. A variety of Typically, children with IFSP will describe the child’s therapy equipment and CP may need different kinds unique needs as well as the adapted toys are available to of therapy, including: services the child will receive help children play and have to address those needs. The fun while they are working • Physical therapy (PT), IFSP will also emphasize the their bodies. Activities such which helps the child de- unique needs of the family, as swimming or horseback velop stronger muscles such so that parents and other riding can help strengthen as those in the legs and family members will know weaker muscles and relax the trunk. Through PT, the child how to help their young child tighter ones. works on skills such as with CP. Early intervention walking, sitting, and keeping services may be provided on his or her balance. New medical treatments are being developed all the a sliding-fee basis, meaning that the costs to the family • Occupational therapy time. Sometimes surgery, will depend upon their (OT), which helps the child Botox injections, or other income. develop fine motor skills medications can help lessen
NICHCY: 1.800.695.0285 3 Cerebral Palsy (FS2) For school-aged children, by simple switch pads or difficult for parents to imag- including preschoolers, keyboard adaptations. ine what their child's future special education and will be like. Good therapy related services will be The ability of the brain and handling can help, but provided through the to find new ways of the most important "treat- school system. School working after an ment" the child can receive is staff will work with the injury is remarkable. love and encouragement, child’s parents to de- Even so, it can be with lots of typical childhood velop an Individualized Education Program, or IEP. The IEP is similar to an IFSP in that it de- Tips for Parents scribes the child’s unique needs and the services that • Learn about CP. The more you know, the more you can have been designed to meet help yourself and your child. See the list of resources those needs. Special educa- and organizations at the end of this publication. tion and related services, which can include PT, OT, • Love and play with your child. Treat your son or and speech-language pathol- daughter as you would a child without disabilities. ogy, are provided at no cost Take your child places, read together, have fun. to parents. • Learn from professionals and other parents how to meet In addition to therapy your child’s special needs, but try not to turn your lives services and special equip- into one round of therapy after another. ment, children with CP may • Ask for help from family and friends. Caring for a child need what is known as with CP is hard work. Teach others what to do and give assistive technology. Examples them plenty of opportunities to practice while you take a of assistive technology break. include: • Keep informed about new treatments and technologies • Communication devices, that may help. New approaches are constantly being which can range from the worked on and can make a huge difference to the quality simple to the sophisticated. of your child’s life. However, be careful about unproven Communication boards, for new “fads.” example, have pictures, symbols, letters, or words • Learn about assistive technology that can help your attached. The child commu- child. This may include a simple communication board nicates by pointing to or to help your child express needs and desires, or may be gazing at the pictures or as sophisticated as a computer with special software. symbols. Augmentative communication devices are • Be patient, keep up your hope for improvement. Your more sophisticated and child, like every child, has a whole lifetime to learn and include voice synthesizers grow. that enable the child to “talk” with others. • Work with professionals in early intervention or in your school to develop an IFSP or an IEP that reflects your • Computer technology, child’s needs and abilities. Be sure to include related which can range from elec- services such as speech-language pathology, physical tronic toys with special therapy, and occupational therapy if your child needs switches to sophisticated these. Don’t forget about assistive technology either! computer programs operated
NICHCY: 1.800.695.0285 4 Cerebral Palsy (FS2) experiences, family, and References friends. With the right mix of support, equipment, extra 1 eMedicine. (2009, March). time, and accommodations, Cerebral palsy. Available all children with CP can be online at: http:// successful learners and full emedicine.medscape.com/ participants in life. article/310740-overview
2 United Cerebral Palsy. Tips for Teachers (2001). General information: Cerebral palsy facts and figures. • Learn more about CP. The resources and organizations at Available online at: the end of this publication will help you. www.ucp.org/ ucp_channeldoc.cfm/1/11/ • This may seem obvious, but sometimes the “look” of CP 10427/10427-10427/447 can given the mistaken impression that a child who has CP cannot learn as much as others. Focus on the 3 Healthcommunities.com. individual child and learn firsthand what needs and (2007, December). Cerebral capabilities he or she has. palsy. Available online at: www.neurologychannel.com/ • Tap into the strategies that teachers of students with cerebralpalsy/index.shtml learning disabilities use for their students. Become knowledgeable about different learning styles. Then you 4 Ibid. can use the approach best suited for a particular child, based upon that child’s learning abilities as well as physical abilities. Resources and Organizations • Be inventive. Ask yourself (and others), “How can I adapt are listed on the next page. 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’s 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.
NICHCY: 1.800.695.0285 5 Cerebral Palsy (FS2) Organizations and Resources
United Cerebral Palsy NINDS | National Institute on Neurological 1.800.872.5827 Disorders and Stroke http://www.ucp.org 1.800.352.9424 Information in English and Spanish. Find an incredible wealth of information and http://www.ninds.nih.gov/disorders/ connections at UCP, including the chapters cerebral_palsy/detail_cerebral_palsy.htm working in your state and publications and resource pages for parents and professionals in English and in Spanish. 4MyChild 1.800.469.2445 http://www.cerebralpalsy.org/ Medline This service of the National Institutes of Health is an excellent place to learn about CP and keep Woodbine House on top of the latest medical treatments and 1.800.843.7323 therapies. Two web pages in particular to visit Visit this commercial publisher to connect with are: a book series on CP, including a guide for parents; a children’s book; and a guide to • Medline’s CP fact sheet teaching motor skills to children with CP. www.nlm.nih.gov/medlineplus/ Read more about these resources at: cerebralpalsy.html http://www.woodbinehouse.com/ Cerebral-Palsy.12.0.0.2.htm • Medline’s interactive tutorial on CP www.nlm.nih.gov/medlineplus/tutorials/ cerebralpalsy/htm/index.htm Cerebral Palsy Guide This guide offers extensive information on CP from a medical perspective. http://gait.aidi.udel.edu/gaitlab/cpGuide.html The CDC | Centers for Disease Control and Prevention 1.800.CDC.INFO Information in English and Spanish. http://www.cdc.gov/ncbddd/cp/index.html
FS2—June 2010
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This publication is made possible through Cooperative Agreement #H326N080003 between FHI 360 and the Office of Special Education Programs, U.S. Department of Education. The contents of this docu- ment do not necessarily reflect the views or policies of the Department of Education, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government.
NICHCY: 1.800.695.0285 6 Cerebral Palsy (FS2)