Caring for a Child with Cerebral Palsy
Advice for families and caregivers
How do I adjust to having a child with cerebral palsy?
What are some characteristics of cerebral palsy?
What goals should parents and caregivers have for their children?
How will physical therapy help?
Are splints and casts still used to treat cerebral palsy?
How can Botox therapy help children with cerebral palsy?
How does aqua therapy help children with cerebral palsy?
How does hippotherapy (horseback riding therapy) work?
How can I help my child to have fun and enjoy life despite his limitations?
What can I do to solve feeding and nutrition issues?
What can I do about bathing challenges?
How can we help children develop their abilities?
Is bath time a fun time or a time for learning?
How can I toilet train a child with cerebral palsy?
How can I be a more patient parent or caregiver?
Where can I find support for parents and caregivers of children with special needs?
What can I do about people who are uncomfortable around my child?
What special care issues apply to adults with cerebral palsy?
How can I find someone to care for my child with cerebral palsy?
The four types of cerebral palsy are:
- Spastic-- the most common, characterized by difficult or stiff movement
- Ataxic -- characterized by a loss of depth perception and balance
- Athetoid/Dyskinetic -- characterized by uncontrolled or involuntary movements
- Mixed -- involves more than one of these types
It is normal to go through a painful period of adjustment upon learning that your child has a special need. Here are some guidelines that may be helpful:
- Grieve the loss of the child you expected or dreamed about and begin to develop new dreams for the child you have.
- Recognize your child's strengths, as well as his or her limitations.
- Focus on helping your child to be "the best he can be." Avoid comparing your child with others.
- Seek help -- with emotional issues, finding a caring health care provider, and creating an educational program that meets your child's needs.
- In addition to health care professionals and various therapists, other parents in your situation may be wonderful resources. They can provide one-on-one support, and many have written personal stories about their adjustments and coping strategies.
- Lack of muscle coordination when performing voluntary movements (ataxia)
- Stiff muscles and exaggerated reflexes (spasticity)
- Asymmetrical walking gait with one foot or leg dragging
- Variations in muscle tone from too stiff to too floppy
- Excessive drooling or difficulties swallowing, sucking or speaking
- Difficulty with precise motions, such as writing or buttoning a shirt
- A range of cognitive disabilities
- Inability to walk and need for a walker or wheelchair
- Need for extensive, lifelong care
- Seizure disorders
Depending on the level of cerebral palsy challenges your child has, reaching your child's goals may require a multidisciplinary team of professionals that can include physicians, therapists (physical, occupational, and speech), psychologists, educators, nurses, special education teachers, and social workers. Ideally, these professionals will work together to address issues of social and emotional development, communication, education, nutrition, and mobility.
- Occupational therapists will work with your child to foster the maximum degree of self-care and functional independence possible.
- Speech therapists can help through oral motor work to enhance sucking, eating, etc. This work will facilitate communication, both through facial and verbal means, making speech as intelligible as possible. If lack of muscle control makes speech too difficult, speech therapists may help teach use of an augmentative communication device or sign language.
- Physical therapists will work on strengthening muscle tone and fostering independence in movement.
- For stiff and tight muscles, working and stretching the muscles should increase comfort.
- Weak muscles can be strengthened. Depending on your child's abilities, a physical therapist could work with your child to gradually enable walking, use of a wheelchair, standing, climbing stairs, throwing a ball, and more.
- As you get to know your child, you will naturally learn to have fun together, whether by playing peek-a-boo, as you would with any infant, or tickling games, etc.
- Another way to have fun is through exercise. Find out from your child's physical therapist which exercises are safe, and then try them out. Exercise will help your child strengthen muscles and relieve stress. Some forms of exercise that children with cerebral palsy may enjoy include: ball games, swimming, yoga, dancing and horseback riding.
Try to place your child on a potty chair a half hour after a meal. Reward him if he's able to use the toilet successfully.
- Acknowledge that your situation is a frustrating one and that anyone could become impatient.
- Focus on how achieving small goals will your child become more self-reliant.
- Build some time for yourself into your daily schedule. Get respite care, either from a family member, friend, volunteer or paid provider.
- Join a support group where you will encounter other parents in the same situation.
- If you try this and still find yourself frustrated and impatient, speak to a counselor.
- Daily Strength Cerebral Palsy Support Group.
- Living with Cerebral Palsy would offer support for your child.
- KidPower.org is a resource for families whose children have cerebral palsy and other disabilities.
- Mildly affected people may go on to live independently and find jobs in the workplace. They find a broad range of jobs: some go on to become writers; some earn master and doctorate degrees.
- Moderately disabled people may be able to function at certain jobs in the workplace, with special accommodations made. Easter Seals and United Cerebral Palsy may have special work options available and they may need attendants while performing those jobs.
- People who are severely affected by cerebral palsy may live at home until their parent dies, and then move to live with another relative. Or, they could move to a nursing home, which would be covered by Medicaid.
Parents should designate a guardian in their will if they have children who don't live independently so that there's always someone to find and oversee the caregiving. They also should set aside funds to pay for the care, along with a reliable overseer who will ensure the money is spent truly meeting their child's needs.