Caring for a Child with Cerebral Palsy

Cerebral palsy is a condition resulting from damage to the areas of the brain that control movement. It is not a disease. People with cerebral palsy (CP) can have a range of chronic movement and posture disorders. Once the disorder appears, usually in the first few years of life, it doesn't worsen. Cerebral palsy can range from mild to severe and is purely a physical impairment. However, in more than half of the cases, people with CP also have some cognitive disabilities. In addition, many people who have CP also have seizure disorders.

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.

Your child's cerebral palsy may include one or more of the following:

• 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
• Tremors
• 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

The goal of cerebral palsy parenting and caregiving is to help children reach their maximum potential. Whatever goals your child aspires to, enjoy your child for who she is. Have fun together, in whatever way your child is able.

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.

Physical therapists can help with comfort, strengthening muscle tone, and overall improvement in independent 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.
  

Splints and casts are widely used to stretch muscles and position joints to facilitate movement. Orthodics -- devices that enhance foot movement and comfort -- may also be used. Other treatments common include medications to help control muscle spasms.

In addition to being used cosmetically, Botox has been found to be very helpful for children with cerebral palsy. It can reduce their spasticity, relax muscles, and increase range of motion.

Being in the water allows many children to move more easily, since it reduces pressure on bones and joints. This then enables the children to strengthen muscles in the water through exercise. Being in the water also gives parents, caregivers, and the child an opportunity can have fun together with water play. In addition, children with cerebral palsy can work on aerobic exercises in the water, improving their overall muscle tone and cardiac health. In general, water therapy increases coordination and endurance while reducing stress.

This therapy has many advantages. It offers children a way to have fun while also improving muscle function, balance, posture and movement, and lowering blood pressure. The horse's stride is similar to a human's and accustoms children to that gait. Therapists ride behind children, holding them in the correct position. Kids who can hold themselves up adequately have the therapist walk alongside the horse. The stimulating, 30-minute therapy session gets kids out of the house and experiencing new situations, sights and feelings.

Here are some thoughts:

• 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.

Feeding issues can very complex for children with cerebral palsy and, in fact, it is estimated that 35 percent of children with cerebral palsy are malnourished. Addressing this issue is important. Have a speech therapist work with your child to strengthen mouth muscles and to use his tongue more efficiently. If the speech therapist is not successful, you can have a gastrostomy feeding tube (G-tube) inserted as an alternative to eating solid foods.

Speak to an occupational therapist about the best way to bathe your child, given your child's specific characteristics, and how best to maneuver things so that you don't harm yourself. It's important that your child feel secure in the bath. Consider a standard bath seat, a semi-reclined bath seat secured with suction cups, or a semi-inflated swimming tube that will allow your child to relax. As your child gets heavier, an occupational therapist can help you purchase or rent a hydraulic lift so you won't harm yourself while helping him in or out of the bath. For older children, a shower in a sitting or kneeling position works well. You'll also want to have grab bars in the shower along with nonskid strips on the floor so your child will be less likely to fall.

One way is to not hand your child items she wants, but to place them just out of reach, so that she has to move to grasp them. This helps stimulate your child's movements and coordination. Though she might take longer to complete tasks, letting her do them will maintain (or increase) her capabilities.

Bath time can be fun--it's a chance for your kids to splash and play. But it's also a great time for in-home therapy. Your child can practice dressing, do range of motion exercises and work on speech.While it is ideal to aim to make bath time both fun and educational, on those occasions when you are exhausted you may want to just concentrate on having fun. When you have more energy, bath time can facilitate learning, as well. Speak with an occupational therapist about how to take advantage of your child's bath time to introduce learning in these other areas.

Many kids with cerebral palsy have spastic abdominal muscles, poor muscle tone or difficulty controlling their bodies. This makes toilet training a difficult challenge. One approach is to make sure they eat lots of fruits and vegetables and have significant amounts of fiber. If that doesn't help, ask your doctor about trying mineral oil, stool softeners or laxatives. In general, though, it's helpful to always have regular mealtimes.
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.

Here are some things that may help:

• 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.

Many other parents have children with special needs. Contact your local Easter Seals chapter, which will offer you advice, contact with other families, and support. Also, your local chapter of United Cerebral Palsy should be helpful. There are also various online support groups:

• CPFamilySupportNetwork.org.
• 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.

Focus on the fact that they haven't learned about cerebral palsy and so are uncomfortable with it. Those who are educated are much more accepting.

Depending on how mild or severe their cerebral palsy is, people will follow very different paths.

• 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.

Care.com is a website that lists caregivers throughout the United States who provide assistance to people with special needs. You can search for caregivers near you and review caregiver profiles including photos, references and background checks, and work history. For specific listings of special needs caregivers, go to Care.com