Parenting is a challenge in itself, but when your child has a severe disability things can be a lot more difficult.
In the UK one in every 400 children are born with Cerebral Palsy – it is a disorder which affects muscle control and movement which is usually caused as a result of an injury to the brain either before or after birth.
Understanding the condition
There are a lot of rumours and misinformation surrounding Cerebral Palsy, so if your child has been diagnosed then it is important for you to separate the facts from opinions.
Your first point of call should be your GP; they can give you a lot of information on different support networks and groups which have been set up to help carers and parents dealing with the condition not to mention the condition itself. While there is no cure for the condition, there are lots of things that can be done to improve the day to day life of someone diagnosed with Cerebral Palsy. While the internet can be one of the biggest pitfalls of misinformation, it is undoubtedly one of the most useful places to explore too.
There are a number of very informative sites which provide free information and a platform for parents in the same position as you to discuss any issues or concerns, connecting with people in a similar position as you and knowing that you are not alone will help you understand and cope with the challenges you are facing.
Once you understand the condition and the impact it can have on your child’s development, you can start to work around it and encourage your child and family to have a normal life.
Finding a balance
Having to adjust to life caring for someone with any disability is tough. There are a lot of changes that you will need to make in order to accommodate for their needs but it is important not to lose your own identity in doing so. A healthy balance between their needs and yours is vital in maintaining a happy environment. If you are the main carer then it can be beneficial for you to take a little break now and again, sharing the responsibility will ease the pressure on you and make family life more relaxing.
This seems like an obvious point to make, but there is a very fine line between being supportive and being over protective. Depending on the severity of their condition they may need constant care but it is important to help them develop and gain a level of independence. It is all too easy to want to do everything for them and wrap them in cotton wool but the best thing you can do for your child and your family is to ensure your family life is as normal as possible.
Stimulating your child’s motor skills can be beneficial in limiting the effect that their condition has on their day to day life as they grow, even exercises as simple as stacking blocks will help with hand eye coordination and muscle control. This can also be tremendously rewarding for all of you if your child responds well to the play and shows signs of progression. Reward their small achievements to encourage them to develop and explore their own limitations.
Cerebral Palsy is not a progressive disorder, so your child’s condition will not typically worsen with age. This means they can adapt very well to life with the condition and live a normal life. From help with modifications to your home to specialist travel insurance for taking your family abroad on holiday there are numerous companies which can make your life easier.
Do what works best for your family
Different doctors and specialists will give you different opinions on how to care for your child and how to deal with their condition. Every parent you meet will have their own view on what you should be doing. It is important to gather as much information as possible but to ultimately make your own decision to best care for your child.
In the end, you spend the most time with your child and you know them better than anyone. If you feel they would benefit from being pushed and stimulated in a certain way then try and see how they react to it. It will not take long to establish if the approach is the right one for your child, if not experiment. Like all parenting it is very much trial and error. Your doctors and specialists can advise and give suggestions, but every child is different.