What kind of future will my child have?

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Cerebral Palsy ranges in severity from mild to severe. Someone with mild spastic hemiplegia, (i.e. difficulty in only one hand or foot) has every chance of leading an active and independent life. Someone with severe quadriplegia (all limbs affected) on the other hand, may graduate with a first from Oxford, but may be entirely reliant on a wheelchair and need additional help with daily living tasks.

Parents often say how frustrating it is not knowing what to expect. Doctors and therapists are understandably nervous about setting expectations that could end up entirely wrong.

The truth is, your child’s capacity is best judged as they grow and their brain becomes fully developed. Closer to age 3 or 4, it is much easier to see how cerebral palsy might constrain their movement or learning.

Focus on doing as much as you can each day, follow the advice of your health team, keep asking questions, find help and opportunities near you, and talk to other parents who have experiences they can share.

Mobility

Many children with CP will experience difficulty moving around in their environment. This can range from problems turning over in bed to not being able to move on the floor or difficulties with walking. A child may need more time to get around, or need to use a walking aid or wheelchair. As the child becomes older, adaptions to the house may be needed.

Will my child be able to walk?

Your specialist is best placed to give you this advice, but as a general guide:

Almost all children with hemiplegia will walk

About 3 in 4 diplegic children will walk

Less than 1 child in 4 quadriplegic children will walk

Communication

It is so important to be able to communicate, to inform those around us how we are feeling, what we need, like and don’t like, even as a baby. A child with CP may have difficulty with any one of the verbal or non-verbal means of communication we typically use, and as a result may need additional strategies such as the use of symbols books, voice output devices etc. These will take time and specialist training to integrate into the child’s everyday life.

Nursery and school

The aim is for every child with cerebral palsy to achieve their potential. This may mean they need help to participate in play and learning at home, nursery or school. Some children will cope well in mainstream settings while others may benefit from being in specialised settings.

Mealtimes

Mealtimes can be very stressful, can take a long time and can be a source of worry e.g. is the child taking on enough nutrition, are they managing to swallow comfortably? Physical help, special preparation of food and drink, equipment such as supportive seating and adapted cutlery may be needed for the child to eat and drink.

Personal care (dressing/bathing etc.)

These activities can be a real challenge to a child with CP and their family. Often parents say that there is not enough time, as it can take longer, especially if the child needs more assistance or uses specialised equipment for the bath and toilet. This can have an impact on other members of the family who need to get ready.

Medical and therapy appointments

It is fair to say that a child with CP and their family will have more appointments than most. In the beginning these may be more frequent, but as the child gets older, may particularly relate to specific times of their life e.g. if needing orthopaedic surgery.

Focus on ability

With so many health professionals involved in the early years it is easy for conversations to focus on what needs to be ‘fixed’. But it’s important to focus on what your child can do, not just what they can’t. Your child’s development might be different from that of other children, but they still need your love and guidance to have dreams, learn from their mistakes and weather life. As a parent, you will learn a great deal about their physical condition; you’ll always be the one they rely on to stay positive and determined. Even the score by praising even the smallest positives.

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