Cerebral palsy: guide for parents

Some children with cerebral palsy manage to lead near-normal lives, others need constant care. Here is what parents of cerebral palsy children can do to give their children the best chance in life.

Learn more about the condition
A child who has cerebral palsy has difficulty with posture and movement. This is because of problems in the area of the brain, which control movement. This can either be the result of brain damage or sections that have not developed properly. This damage can take place during pregnancy, childbirth or during childhood. But the end result remains the same: the brain is unable to control muscle co-ordination properly.

There are many different types of cerebral palsy – in fact no two children with cerebral palsy are precisely alike. Some are so lightly affected that they have little more than a slight weakness or a limp, while others can have difficulties crawling, walking, sitting, talking, feeding or using their hands.

Some children are affected on only one side of their bodies; others are affected mainly in the legs, while others are affected all over their bodies. A worst case scenario is when a child cannot control his/her muscles at all and will need to be looked after for the rest of their lives.

But not only movement is affected by cerebral palsy. Other areas of the brain could also be influenced. That is why many children with cerebral palsy also can have mental impairment, epilepsy, have difficulty swallowing or controlling their facial expressions, have difficulty speaking and could have problems seeing and hearing properly.

But that paints a very bleak picture, which is often far from the reality for a child with cerebral palsy. About half of all children with cerebral palsy have above average, average or only slightly below average intelligence and can therefore benefit from formal education, often in mainstream schools. The rest of the children have moderate to very severe intellectual disabilities. These children benefit from admission to training schools or special care centres.

In some cases the associated difficulties may be more handicapping than the movement problems. Probably the most devastating disability is the inability to communicate. Where a child does not have the use of his/her hands nor intelligible speech, it often requires considerable time, patient observation and experience to determine the child’s true intellectual level.

How is it treated?
It may be difficult to diagnose cerebral palsy in very young infants. The condition can often not be detected until a child does not develop the movement, posture and balance necessary for sitting and standing. Some types of cerebral palsy rarely become obvious before the child reaches two years of age.

There is no cure because damaged or underdeveloped brain cells cannot be restored. But treatment early in life can greatly improve the quality of life of these children. One person alone cannot manage cerebral palsy – ideally there should be team involved in the treatment. Apart from a doctor, occupational-, speech- and physiotherapists, other important members of the team include other medical specialists, the social worker, the psychologist, teachers and other caregivers.

But it is the parent who plays the most important role. The treatment team should give parents home programmes so that treatment can continue at home.

What you can do at home
One of the many things parents can do, is to help their children to communicate as best as they can.

Here are a few tips:

• Speak slowly and clearly.
• Make eye contact when you speak.
• Discuss whatever your child is interested in.
• Use gestures, facial expression and body language when talking.
• Label all items. For example, during bath time, label the bath items around such as soap, tap, towel and water.
• Stick to the same words. For example, if the family uses the word “coat”, use it until your child understands and/or can say the word, then introduce the word “jacket”.
• Improve vocabulary. For example, if the child says “car” the adult might say “mommy’s car” or “fast car” depending on the child’s interest.
• Model the correct words for your child. If a child says something wrong, never say that it is wrong, rather repeat the word in the correct way. For example, if your child says “tock” for “sock”, you must repeat the right word.
• Use words that express your child’s feelings, wants and intentions. For example, if your child points to a tap, you might say: “Drink/want drink”. Or if your child falls, you could say: “Ow, that hurt”.
• Pause often and give your child a chance to process the information.
• Use open-ended questions to encourage responses. For example: “I wonder who’s in the box?”.
• Use as many words in a sentence as your child can or with one or two extra words.
• Talk to your child about what is happening at the moment.
• Take turns when you communicate - encouraging your child to respond.
• Read to your child.

Most importantly, learning should be fun and not pressured.