Caring for a loved one with cerebral palsy can be a challenging and at times overwhelming experience, as in some cases the carer is very much a lifeline for the cerebral palsy patient – as well as being the main source of human companionship and mental stimulation or entertainment.
Not all people with cerebral palsy require 24/7 care, however – and many children born with varying degrees of disability as a result of cerebral palsy adapt and carry on, enjoying active and fulfilling lives.
Some of the daily tasks a carer for a cerebral palsy patient may have to carry out include:
For many parents and grandparents, welcoming a child with cerebral palsy into the family is a profoundly life changing experience but they often discover they have the resources to cope and the experience is more positive than they might have expected.
With a severely disabled child, there will be both physical and emotional challenges and it is important to get the help you need, and also talk about how you feel with family and friends – and especially your partner.
The inevitable “Why did it have to happen?” question may be tinged with guilt. Some parents may blame themselves, and again this is only natural. But speak to your GP if you find you are unable to shake off feelings of guilt or sadness, as counselling may be available at your GP surgery.
Children with cerebral palsy often deal with their disability extremely well – and like all children, will most likely turn out to be positive and resilient. As your child grows and develops at their own pace they will make their likes and dislikes and interests and feelings known, just like other children.
Your child will develop a unique personality and many children with cerebral palsy make an enormous contribution to family life and have a real zest for making the most of their own lives, getting involved in activities like sports or theatre groups.
If your child was born with cerebral palsy as a result of medical negligence, this can make the early years particularly difficult if you have to pursue a claim for medical negligence.
These are made through a personal injury solicitor – and these often have contacts with agencies and organisations who can help you deliver the care your child needs, including support for the whole family.
When your child starts school, you may have to apply for a Special Educational Needs (SEN) statement to ensure that any extra help available is put in place. Statementing can be a stressful process if there are limited resources available in your LEA so again contacting an education solicitor who can guide you through the process and handle any appeals can relieve the pressure of applying for SEN. The government’s own website GOV.UK also has more information about statementing.
In most cases, children with cerebral palsy are no less intelligent as a result – but communication may be difficult and they may also have other physical impairments such as sight and hearing impairment and problems with speech. There are many toys now available for children with cerebral palsy – and for children with sight problems, these can help offer stimulation using touch, textures and sounds. Specialist online toy shops offering toys for children with cerebral palsy include Toy Shop UK.
The UK organisation Scope offers support to families who have a loved one with cerebral palsy – and for families whose relatives or friends may have just had a child who has been born or newly diagnosed with cerebral palsy, being there to talk and lend a hand with caring for the new arrival can help with acceptance and adjustment to the situation. Scope can also advise on local groups in your area where families caring for a loved one with cerebral palsy can meet up and share their experiences.
Caring for someone with cerebral palsy can mean you become extremely close to them and it is important for both of you to have a break from the situation, so that your child can become independent and you can also refuel. There is no guilt in having a break from your caring duties – and your child will become much more their own person if they also socialise without you occasionally and are allowed to have some independence, especially when they are older.