What is cerebral palsy?
Cerebral palsy is a group of problems that make it difficult for people to control their own physical movement. A child with cerebral palsy can’t move muscles normally. Cerebral palsy is caused when the part of the brain that controls muscle movement doesn’t work properly. How much control the child has of movements will depend on how much the brain differs from normal.
In most cases, cerebral palsy doesn’t worsen with age. This means children don’t usually lose things they have already learned. Most children benefit greatly from treatment and therapy. For more information on the different types of cerebral palsy and other words doctors or other professionals may use to describe cerebral palsy, click here.
What can I do to help my child?
Talk with other parents of children with cerebral palsy. They have gone through what you are going through now and perhaps can help. You also can get help from parent support and advocacy groups. Research tells us that the earlier we begin to help children grow and develop, the better the results for the child and family.
Below are some checklists of things to help your child.
Checklists of things I can do to help my child with Cerebral Palsy.
IN THE STATE OF FLORIDA:
Get my child evaluated (tested).
If your child is between ages birth to 3 years old, your child can be evaluated by a team of experts through the Early Steps program for free. Your child may be eligible for free services. You can contact one of the centers closest to your home.
For more information or to make a referral to Early Steps, please call (800) 218-0001
or visit the contact list :http://www.floridahealth.gov/AlternateSites/CMS-Kids/home/contact/earlysteps.pdf
If your child is 3-5 years old and has problems with learning, speaking, playing, seeing, walking or hearing, he or she can still receive free screening through the Child Find/Florida Diagnostic and Learning Resources System (FDLRS) program. They also provide testing for special education programs.
Florida’s FDLRS Child Find
Florida Department of Education
Contact Children’s Medical Services (CMS):
CMS provides local offices and sometimes will refer children to medical centers that work with CMS. Different services are provided to help care for children with disabilities, special needs or major medical conditions. These services range from early intervention program such as Early Steps, to ones for a specific medical condition.
Children’s Medical Services
Main Phone: (850) 245-4200
Contact the Agency for Persons with Disabilities
: To register for services for your child. If your child is 3 or older and has cerebral palsy, he or she is eligible for services with this agency. Examples of services for which your child may be eligible for are:
- Respite: A caregiver comes to your home so you can take a break for shopping, visiting friends and family or just to have a night out.
- Medical supplies: Van lifts, wheelchairs, strollers, adaptive eating devices, communication boards.
- Therapies: Occupational, physical or speech as prescribed by a doctor.
- Behavioral services: Teaches your child ways to deal with day-to-day problems.
- In-home supports: Personal care assistance, companions, homemaker services.
For more information on services and how to apply for them, please click here.
Work with my child’s service providers:
A service provider is anyone who works with you and your child such as your pediatrician, a physical therapist, a teacher, a principal, a social worker or any professional. Remember that you know more about your child than anyone else and are the main influence in your child’s life. Some tips for speaking with service providers:
- Feel free to ask questions and make comments. Be specific about what you know about your child and what you want and need for your child. Be honest about what you expect, any worries you may have, or about anything you don’t understand.
- If you think your child needs something in particular (such as a speech evaluation or assistive technology), keep asking until you get it or until you understand why it is not needed.
- Work with professionals in early intervention or in your school to write your child’s IFSP or IEP to reflect your child’s needs and abilities. Be sure it includes such services as speech-language pathology, physical therapy and occupational therapy if your child needs these. Don’t forget about assistive technology.
Get more information: Visit more websites. Read a book. Watch a video on cerebral palsy. Include your child and family. Talk with another parent Help Me Grow can help you meet other parents and get services.
Help my child’s physical movements and development:
Take part in family fun, recreation activities, play and all parts of your daily life. Having cerebral palsy doesn’t mean your child should miss out. You can encourage your child to learn and develop better movement and control of muscles at home and in the community. Many fun summer and outdoor activities are available to you and your child. For a list of activities and programs, see below.
Dial 211 to find recreation areas and programs
Urge your child to move around:
Do whatever gets your child moving. For example, put that favorite toy just out of reach, or try “dancing” with your child, playing, rolling on the floor, or swinging. Encourage your child to move and have fun like any child.
Think of fun and normal ways to encourage your child’s use of small muscles:
(Like those found in the fingers and face.) For example:
- Let your child use fingers to eat.
- Encourage your child to finger-paint, draw, make things with Playdough.
- Practice making faces or play games using hands and/or the face.
- Computer with a touch screen to communicate (picture below).
- A spoon with a special handle so the child can feed him/herself. (See picture below.)
- A special device that holds your child’s clothes to help her or him get dressed.
Learn more about what you can do for your child: Ask questions about how and what you can do to let your child live up to a full potential while living your own life. Doing ordinary things such as eating, bath time, shopping, traveling in the car and family outings make a difference in your child’s abilities.
Help my child’s speech and language skills:
Talk with him/her: Just talking with your child can encourage speech and language skills. For example while shopping in the grocery store name you could name each item as you put it in the grocery cart. Talk about color and shape. Your child will learn to talk from listening to you.
If your child tries to speak back to you, give plenty of time to answer. He or she may have lots to say, but it may take longer to get it out.
Play with your child: Try to spend time each day just playing and talking with your child. This can be hard to arrange with big families or hectic life styles, but often helps. Music tapes with which a child can sing along also can be effective.
Read to your child: Point to the objects in the pictures to help develop language.
Ask your child’s speech and language therapist what you can do at home: Get your child’s speech and language skills evaluated (tested). Don’t worry if your child is too young to talk yet. Speech and language therapists see very young children, even infants. It’s never too early to get a communication (language) assessment (test), especially for a baby or toddler who may have an oral motor difficulty. This means they have problems talking, biting, chewing or swallowing because they don’t have very good control over the tongue, lips and cheeks.
How can I deal with all this?
First of all you need to take care of yourself
Having a child with a disability is hard work. There are times of joy and celebration, but times of heartbreak, too. It is easy to get overwhelmed.
Make a difference in your child’s life by working with your child and his or her therapists, doctors and teachers. Before you can take care of anyone else, be kind to yourself. Taking care of yourself is not selfish – but rather necessary. You can’t help your child if you are overworked and overstressed.
Figure out how to take care of your own needs. The next time friends or family say, “What can I do to help?” let them baby sit or lend a hand so you can have some time to yourself. Below are some things you can do to “recharge your batteries”:
- Do something that makes you feel happy: It could be going out with a loved one or friends, taking a long bath or a creative project.
- Exercise is vital for your mind, body and spirit: Try long walks, lifting weights, bike riding or an aerobic class. Make sure it is fun.
- Talk with other parents of children with disabilities.
- Stay hopeful: Many parents find the following poem, “Welcome to Holland,” to be a comfort. Click here to read Welcome to Holland.
What are some other ways to describe cerebral palsy?
There are three major types of cerebral palsy. Some children may have more than one type. You may hear one or more of the terms below from your doctor or others:
Spastic CP: A type of cerebral palsy that makes moving hard because the muscles go stiff. When both legs are involved, it can be very hard to walk because the muscles in the hips and legs get tight and cause the legs to turn inward and cross at the knees.
Sometimes only one side of the body has problems. Usually the arm is more likely to be a problem than the leg. The most severe type will involve the arms, the legs and the chest. Children with this kind of cerebral palsy more likely will have damage to the part of the brain that controls thinking and reasoning (lower intelligence).
Athetoid or Dyskinetic CP: Children with this type of cerebral palsy often have sudden changes in muscle tone. They may shake, have tremors, or go stiff and be unable to stop these changes. Many times these children have problems sitting and walking because they can’t control their bodies. They also may have problems with sucking, swallowing and talking if they can’t control the smaller muscles of their face and tongue.
Ataxic CP: This causes problems with balance and coordination. Children with Ataxic CP may seem clumsy and walk with their feet far apart or seem to “wobble.” They may have problems with their “small muscles” (like the muscles in the face, tongue or fingers). This can make it hard for the child to eat, tie their shoes, get dressed, or write.
March of Dimes, 2005
These words also can describe Cerebal Palsy:
- Diplegia: This means only the muscles in the legs are hard to control.
- Hemiplegia: This means half of the body (such as the right arm and leg) has problems.
- Quadriplegia: This means both arms and legs can’t be controlled. It also can mean the child has problems controlling muscles in the face and chest.
Do many children have cerebral palsy?
About 3 children in every 1,000 have cerebral palsy. This means that it is slightly more common than diabetes. In the United States about 500,000 children and adults have cerebral palsy. Cerebral palsy affects males and females equally. Children are often 2 or 3 years old before a doctor can tell if a child has cerebral palsy.
March of Dimes, 2005
What does this mean about intelligence and learning?
By definition, having cerebral palsy doesn’t tell us anything about a child’s ability to learn and reason (intelligence). But how much and how fast they learn may be different. Your child may need special supports and more time to learn some things.
Sometimes a child with severe cerebral palsy may have lower intelligence because there is damage to the part of the brain that controls thinking and reasoning. A thorough evaluation (testing) by a qualified psychologist can tell you if your child’s ability to learn has been affected by cerebral palsy. An evaluation is painless, and usually relatively brief. You can have your child tested at several places.
Is there a cure or treatment for cerebral palsy?
Remember that cerebral palsy occurs when there has been damage to the brain. The damage to the brain can’t be reversed. But many interventions (types of therapy, surgeries or medications) can help your child grow and develop to the greatest potential. Some possible interventions:
- Physical therapy helps children with the motor skills that use the large muscles in the body. These are used for things like sitting and walking. Therapy can improve your child’s muscle strength and help prevent muscles from shortening. Begin therapy as early as possible.
Your child should get an evaluation (testing) from a physical therapist. A physical therapist also can show you exercises that you and your child can do at home. The therapist may suggest assistive devices to help your child with movement.
- Occupational therapy helps children with joint and muscle problems learn how to do daily living activities — for example, eating, dressing and bathing.
- Massage therapy also can help with daily activities by reducing spasticity or rigid and stiff muscles.
- Assistive technology or assistive devices can be any device or tool to help someone with a disability or special need. Many devices can help your child do what other children can do. Some examples:
- Computer with a touch screen or board with letters to help your child communicate.
- A spoon with large handle to help your child eat.
- A leg brace or walker to help your child walk.
- Speech therapy may be necessary if your child has problems speaking, communicating or swallowing. A licensed speech and language therapist, sometimes called a pathologist, will evaluate your child and help with language issues.
- Surgery may be done if there is a need to lengthen certain muscles.
- Medication may be given by mouth or by shots to reduce spasticity (stiff muscles) or uncontrollable muscle movements. Discuss treatment possibilities with your child’s doctor.
Some children with cerebral palsy have seizures. A seizure can range from having uncontrollable movement of arms and legs, fainting or just “spacing out,” staring at nothing and looking although the child is not paying attention. Your doctor usually can help prevent seizures with medication.
Adapted from March of Dimes, 2005
Who are some professionals my child may need to see?
Your child may need to see many different health care specialists. For example:
- Pediatrician: A doctor who specializes in treating children. The word “pediatric” in front of a professional’s title means he or she works with children.
- Pediatric physical therapist: A professional trained to help children make muscles stronger and the joints in their arms, legs and chest more flexible.
- Pediatric occupational therapist: A professional trained to help children with joint and muscle conditions as well as helping to figure out what problems these joints and muscles will have on a child’s daily living, e.g., getting dressed, eating. The therapist also can design and suggest assistive devices to improve problem areas.
- Pediatric speech-language therapist: A professional who evaluates and treats communication disorders (problems with speech) and swallowing problems. A speech-language pathologist is sometimes called a speech therapist or speech pathologist.
- Pediatric audiologist: A professional trained to evaluate hearing loss and related disorders, including balance (vestibular) disorders and tinnitus (ringing in the ears). The audiologist also helps overcome hearing loss.
- Pediatric psychologist: A professional who will test your child’s ability to learn and reason. A thorough evaluation (testing) by a qualified psychologist can tell you if your child’s ability to learn has been affected by cerebral palsy. An evaluation is painless and usually relatively brief.
- Social worker and counselor: A professional who provides counseling and emotional support for the child and family, and may help coordinate services, too.
- Care coordinator: An individual responsible for organizing the details across agency lines and serving as your contact to help you and your family get services and assistance.
- Early childhood special educator/special-education teacher: A teacher trained to work with your child, focusing attention on your child’s development and working with you to learn techniques to benefit your child.
- Assistive technology specialist: This person works with individuals with disabilities to provide assistive technology solutions. Assistive technology or assistive devices help a person with a disability with daily living tasks, such as eating, speaking, getting around, working, playing. An assistive technology specialist knows many different options to help your child live life the fullest. Some services and assistive devices are covered under Medicaid.
- Pediatric neurologist: A doctor who specializes in treating conditions of the nervous system and the brain in children, such as seizures. Children with cerebral palsy sometimes have seizures that can be controlled with medication.
- Pediatric orthopedic surgeon: A doctor who specializes in treating conditions of bones, muscles and joints in children. Sometimes surgery is necessary when children have shortened muscles.
- Pediatric otolaryngologist: A doctor who specializes in treating conditions of the ears, nose and throat in children.
What are some websites where I can learn more about cerebral palsy?
Bandaids and Blackboard http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/sitemap.html A great site for kids, teens and parents of kids with medical challenges.
March of Dimes http://www.marchofdimes.com/pnhec/4439_1208.asp Provides quick reference and fact sheet.
NICHCY http://www.parentcenterhub.org/repository/cp/ Fact sheet on cerebral palsy.
NIH MedlinePlus http://www.nlm.nih.gov/medlineplus/cerebralpalsy.html A comprehensive source of links, this is a service of the U.S. National Library of Medicine and the National Institutes of Health.
United Cerebral Palsy http://www.ucp.org Search the site for a quick reference and fact sheet on the condition, research and interventions as well as local programs.
Teachnology: The Web Portal for Educators http://www.teach-nology.com/teachers/special_ed/disabilities/cp/ This website provides links to many excellent resources on cerebral palsy for teachers.
Touch Research Institute, Department of Pediatrics at the University of Miami http://www.miami.edu/touch-research/ The Touch Research Institutes are dedicated to studying the effects of touch therapy and have researched the effects of massage therapy.
What are some books to help my family and I learn more about cerebral palsy?
Books for Children
Stuck in Neutral by Terry Trueman (2001). This book is written in the first person telling the story of Shawn McDaniel, a 14-year-old boy with cerebral palsy. (Ages 11 to 15)
Books for Parents
Children with Cerebral Palsy: A Parents’ Guide (Second Edition) edited by Elaine Geralis (1998). A revised and updated edition of this classic primer for parents provides a complete spectrum of information and compassionate advice about cerebral palsy and its effect on a child’s development and education.
Family Guide to Assistive Technology by Katharin A. Kelker, Roger Holt and John Sullivan (2000). This guide is intended to help parents learn more about assistive technology and how it can help their child. Parents have a much better chance of meeting their child’s needs if they are involved in selecting and planning assistive technology choices.
Cerebral Palsy: A Complete Guide for Caregiving by Freeman Miller and Stephen J. Bachrach (1998). This book was written by a team of experts associated with the cerebral palsy program at the Alfred I. duPont Institute in Wilmington, Del. The chapters are: What is Cerebral Palsy?; An Overview of Child Development; Medical Problems Associated with Cerebral Palsy; Intellectual, Psychological and Social Development; Hemiplegia; Diplegia; Quadriplegia; The Adult with Cerebral Palsy; How the Health Care System Works; Financing Care of the Child with Cerebral Palsy; Navigating the Educational System, and Being an Advocate for Your Child: Using the Legal System.
My Left Foot is the story of legendary Irishman Christy Brown (Daniel Day-Lewis) who, despite having cerebral palsy, learned to use his one controllable extremity — his left foot — to become an accomplished artist and writer. This movie won Academy Awards in 1989 for Best Actor (Daniel Day-Lewis) and Best Supporting Actress (Brenda Fricker) and earned Oscar nominations for Best Picture, Best Director and Best Adapted Screenplay.
Gaby: A True Story. Based on the real life story of writer Gaby Brimmer (Rachel Levin). She was born with cerebral palsy and unable to move anything but her left foot . Despite this she finished high school, attended university in Mexico City, and became a well-known author.