Life for the parents of a child with cerebral palsy is changed forever and life for a child with cerebral palsy can often be very different from that of many of their peers. Although it can be upsetting to learn your child has cerebral palsy, there are many supportive organisations and information available online to ensure you get the answers you need about living with cerebral palsy.
The ongoing health pandemic will be placing additional pressure on families caring for a child with complex needs with many of the relied on support services currently unavailable.
In this post, we are looking at the ways in which quality of life can be improved for a child with cerebral palsy. There are many different aspects of life which are affected by this neurological disorder but there are also several accessible solutions to make things just that bit easier to work with.
Cerebral palsy is a condition affecting muscle tone, movement, and motor skills. This can hinder the body’s ability to move in a coordinated manner, so children may find walking and general tasks more difficult or in some cases, impossible. Although the level at which this affects mobility varies greatly from person to person, it is still a life-long condition, so it is important to start early helping your child to move more easily and comfortably where possible.
Periods of lockdown will no doubt make this more challenging however, regular exercises in the home, garden and the open air locally will have great benefits.
- Early evaluation – making sure your child’s case is evaluated as soon as you can, can provide you with a wealth of knowledge which is key to giving your child the best quality of life. You will discover techniques and steps which you can build upon as they grow and develop.
- Orthopaedic provider and physical therapy – an evaluation should be carried out so that procedures and exercises can be put in place to help improve your child’s strength and movement.
- Medication – get the necessary tests to bring to light if any medication is needed to improve your child’s day-to-day life experience.
- Surgery – sometimes it might be necessary for a child to undergo surgery which will help them to move more freely or comfortably.
- Supporting aids – you may find that a wheelchair or other form of assistive equipment – such as walkers, canes or supportive equipment for tasks at home – will make your child’s life significantly more comfortable and make tasks easier to carry out, for example, bath lifts.
Sometimes communication can prove difficult for children with cerebral palsy and some children are actually non-verbal so need a lot of extra support. It can take a fair amount of effort to get your child communicating in a practical and understandable manner, but every step taken to achieve this is so important. Again, as with movement, starting early with your child can yield the best results.
- Patience – this can be hard, but it will make things so much less fraught and your child will not believe that they are a hindrance to you.
- Relevant treatment and speech therapy– any special treatments or therapies which will make communication easier are a must for ensuring that frustrations and difficulties are reduced.
- Assistive equipment – communication boards, tablets, augmentative and alternative communication (AAC), sign language and body language are all great ways in which your child can learn to improve their skills in this area.
- Computers – using technology to assist with conversations and interactions can make things more enjoyable for children with cerebral palsy. Text to speech, eye-tracking technology and computers with voice synthesisers can all be very beneficial. Voice synthesisers no longer have to be robotic either, there are systems now which have more human and age-appropriate voices to suit a child of any age and gender. Augmentative and alternative communication (AAC) as mentioned above, can be highly conducive to all aspects of life – communicating, learning, socialising and entertainment – with eye tracking technology and voice synthesising computers, bright children whose bodies just won’t allow them to do the things they want, can really thrive with AAC.
Mealtimes can be trying for all parents – when a child refuses to eat or is picky with their food – but a child with cerebral palsy may need extra help when it comes to dining. Often, they will need assistance with eating all of the time, and this will not change as they grow older. Special diets are also very important – nutritional meals with plenty of vegetables will help your child to stay healthy.
Maintaining as normal a routine as possible during 2021 is essential.
- Feeding – since cerebral palsy can reduce motor skills, it may be necessary to manually feed your child at every meal. Speech therapists can provide you with techniques which will help at mealtimes and suggest ways in which this can be made easier.
- Special meals – certain dietary requirements may need to be catered for to ensure your child does not experience any form of discomfort from eating the wrong foods
- Healthy foods – a nutritious diet is the best thing for everyone, so if everyone in your family can eat the same foods, your child will feel more included at mealtimes. This also helps on a practical level with only one dish required per mealtime which will certainly help to reduce stress levels. Healthy meals are also a cornerstone to building strength and getting a better night’s sleep.
Getting any child off to bed is a challenge, and getting them to sleep once they are there can sometimes be nigh-on impossible, but there are some really great ways in which you can ensure your child gets the best quality sleep possible and make bedtimes a little simpler. Cerebral palsy can make this process harder again, but here is a list of some tips which should help make bedtimes more manageable.
The pandemic will no doubt play havoc with sleep and bedtime routines. Focusing on maintaining good quality sleep, for the whole family, is key to staying healthy and well.
- Good quality sleep – this can be enhanced by making sure your child eat healthily and gets some form of exercise (ideally outdoors for fresh air).
- Correct amount of sleep
- Bedtime routine – creating a calming routine as bedtime approaches means your child should feel more settled in the evenings and the natural instincts to become tired as the daylight dissipates will kick in.
- Comfort – discovering a sleeping position which is most comfortable for the child will do wonders for sleep quality and quantity. A physical therapist will have suggestions on how best your child should be positioned to get the best/easiest sleep.
Teaching your child the importance of good hygiene is a must and starting from a young age can be extremely beneficial for a child with a neurological disorder. As they grow and develop, they will want more independence, so teaching these habits early will give your child a great start in life.
- Routine – developing a good routine for daily hygiene practices (using the bathroom, bathing, getting dressed, brushing teeth, washing hands) is key. This regular way of doing things should stick and become a habit, which is great for preparing for adult life.
- Self sufficiency – if it is possible to teach your child to do certain self-care tasks independently, it is worth doing so and start teaching this early. For example, you may find that your child can dress on their own by laying on their side, sitting against a wall or holding onto something sturdy.
- Supports – sturdy handles for bathing or using the toilet should be installed, these will benefit your child as they get older so they can benefit from more privacy (if they can do these tasks alone).
- Safety – non-slip pads are also an ideal addition to showers, baths or wet room floors.
- Introduce games – when children are younger, making their daily hygiene routines fun and memorable can be instrumental in ensuring they continue to practice basic self-care. Songs for getting ready for bed, flashing toothbrushes with timers or toys in the bath, can all be good ways of keeping your child engaged.
- Make your child feel part of the routine – additional to the above addition of fun, your child will want to feel as though they can do things themselves, let them join in with the things they can manage to do.
Stress the importance of these practices – children should learn that these daily tasks are essential and cannot be skipped or done to a lesser level. A grasp of good hygiene from a young age is ideal.
Taking time to enjoy the little things is a great way to bond with your child and playtime is the perfect time to do this. We all respond to positive stimuli and enjoy doing the things that make us happiest, so including fun activities in a child’s day is a positive way to improve quality of life for a child with cerebral palsy.
The health benefits of this are particularly enhanced during challenging times.
- Daily activities – this does not mean spending an arm and a leg on taking your child out somewhere, this can be something as simple as throwing a ball back and forth, drawing or even telling stories.
- New experiences – as children grow, they crave the unknown and want to have new experiences whenever possible. Introduce different activities or a new way of doing something to help with their development.
- Limitations – playtime activities can depend on the level of cerebral palsy and the mobility of your child, but play is important for all children, so should be included in their day-to-day schedule.
- Seeking help – working with a physical therapist is a great way to learn the best way to work with your child’s specific condition, they will advise on the methods of play that are best suited to your child.
Some levels of cerebral palsy can affect a child’s ability to learn, so you may have to get help from a specialist who will help you develop ways in which your child can learn from home, as well as finding the right educational institutions (which we look at a little more in the next section). Learning doesn’t have to mean sitting studying a book, there are so many ways that learning can be incorporated into everyday activities.
- Daily – develop strategies for home education. This could be something as simple as reading stories or teaching your child daily living skills which can be implemented in the future.
- Start early – the sooner your child starts learning, the better. Grasping things from a young age allows you to get a good routine set up with your child, especially if they can do certain daily tasks on their own.
- Specialist education – home learning should be combined with specialised schooling as this will give your child the chance to socialise with children like them.
- Communication – cerebral palsy can cause some children to struggle with communication, this can range from difficulty with muscle coordination to non-verbal. Speech therapists will help to develop ways to help your child verbalise (if this is something they are capable of) or techniques that can be adopted for non-verbal children such as communication boards or computers (as mentioned and detailed earlier).
- Practice and reassurance – getting things down to a fine art takes practice and time. Also, if your child is receiving praise and being reassured regularly, this can help them to build skills faster and instill them with confidence.
- Using communication boards – boards with letters, words or images can be a great learning tool for children with cerebral palsy. Visual representations of emotions, activities or general needs can be extremely helpful when dealing with non-verbal children.
- Reading or making up stories – these will help with developing communication skills and imagination.
Setting your child up for their future is so important and teaching them the skills they will need as they grow is imperative.
- Teach independence early on – start young, make sure they understand the importance of everything you do and everything they can do too. Forming good habits relies on consistency, so if they have done something all of their lives, it will be more likely that this behaviour will continue.
- Build up their skills all of the time – let them do the things that they can themselves and always encourage them to try new things if possible.
- Confidence building – learning from mistakes and practicing to make perfect are all key elements of growing up. Make sure that praise is given for independence and doing good things, this helps with development of skills and self-determination.
Although life may be far from “normal” for some children with cerebral palsy, it can still be high quality and full of fun. Ensuring that you have the best measures in place for your child’s particular condition will automatically improve their quality of life, but providing the love, support and attention your child needs will always be a positive place to start. There is a wealth of support and help available, so don’t be afraid to ask!