Around 2,000 babies are diagnosed with cerebral palsy every year in the UK. Cerebral palsy is the name for a group of lifelong conditions that affect movement and co-ordination, caused by a problem with the brain that occurs before, during or soon after birth.
The symptoms for cerebral palsy are not usually obvious just after a baby is born. They normally become noticeable during the first two or three years of a child’s life.
Delays in reaching development milestones – for example, not sitting by eight months or not walking by 18 months.
The severity of symptoms can vary significantly. Some people only have minor problems, while others may be severely disabled.
There is currently no cure for cerebral palsy, but treatments are available to help people with the condition have a normal and independent life as much as possible.
Treatment may include physiotherapy, speech therapy and/or occupational therapy and in some cases surgery might be a possibility to treat movement or growth problems. There are also various aids and adaptations available to make daily living less difficult.
Cerebral palsy affects each person differently and it may be very difficult to predict what the outlook will be for you or your child.
Children with cerebral palsy face a lifetime of challenges and although your child’s doctors and therapists handle much of this treatment, there are ways you can help to make your child’s life easier.
Cerebral palsy affects each person in a different way, so no two families have the exact same experience when they become involved in their child’s care. Whether your child has mild or severe cerebral palsy, there are a number of ways that you can help your child to reach their true potential.
Your child may see a number of healthcare providers, from Paediatricians to specialists, to therapists and beyond. One doctor will probably refer your child to others for treatment and keep tabs on the care that they receive, but it is wise for you to stay informed about your child’s health to in order to ensure continuity of care which will help achieve the optimum outcome for your child.
With guidance from doctors, physiotherapists and other healthcare workers, therapy time does not have to end when your appointment is over. If you are instructed in the proper ways to help your child exercise at home, you can help them stretch their muscles, build balance and reduce pain between hospital visits. You should also encourage your child to be active, expand their mind, focus on diet and most importantly stay positive. It is also a good idea to try and get to know other parents. You are likely to meet other mums and dads during your child’s care. It can help to build friendships with parents who are faced with the same challenges.
Other parents of children with cerebral palsy might be able to offer you advice and support. They might help to lift your spirits on tough days and not only that your children may become friends.
If you would like help and support and an opportunity to meet other people we would be delighted to hear from you on our forum.
Chris Gresswell-Green is a volunteer committee member for the Lincolnshire Cerebral Palsy Society and a specialist cerebral palsy lawyer at Bridge McFarland Solicitors.
My earliest memory of having, what I would later discover was cerebral palsy, was Christmas 1985. I was about to appear in my school’s nativity play, in the somewhat lesser known role of ‘snowflake* #5’. The acting brief was simple, ‘gently spin around the assembly hall on tiptoes, whilst wiggling fingers, on outstretched arms’. Simple!
[*please note: for those reading in 2018- ‘Snowflake’, as in frozen water, not a liberal viewed youth].
Less than two minutes into the dress rehearsal and I am called to the side by a rather perplexed teacher. She repeated the acting brief again, as apparently I was either spinning around or wiggling my fingers, but not simultaneously, I was only using my right arm and my ‘walking on tiptoes’ was not winning any awards either. After several minutes of one-to-one ‘snowflake tuition’ it was decided that perhaps just watching would be a more suitable role for me.
At the end of the day, the teacher wanted to speak to my parents. I was asked to wait outside, whilst my mother and father were ushered into a room followed by the school nurse (this was the 1980s, therefore she was actually a nurse- not the school receptionist with a first aid qualification). Well, I was either in trouble, or I had nits. Sometime later, the door opened and the nurse was finishing her conversation with ‘so, I’ll make the referral straight away’. They all seemed pretty happy and as I wasn’t in trouble or being quarantined for nits, so was I. At home, I was reliably informed by my parents that the act of wiggling one’s fingers and walking on tiptoes was simply a case of ‘some kids can and some kids can’t’. I don’t remember asking why. I guess it seemed a reasonable explanation.
Looking back now, I remember having a Teaching Assistant in my early years at school (It was the 1980s, so this was usually a class mates’ mum who volunteered to come in). They helped me with things like, speech (by sounding out words on bits of card), teaching me to hold a pencil and reminding me to occasionally use my left arm.
I don’t remember much about seeing any doctors or having any tests. My Mother said, she first raised concerns when I was still not walking after 18 months old, which gained me the title of ‘a late developer’. When I did start walking, I gained the more flattering and somewhat more permanent title of ‘flat footed’.
After I left school, my mother was cleaning out some drawers at home and handed me an old letter. It was from a paediatrician, informing my parents that I was diagnosed with left sided hemiplegic cerebral palsy. My first question was ‘why didn’t anyone tell me?’ My parents simply explained they didn’t want to risk me using my ‘cerebral palsy’ as an excuse not to try things or not to do my best. They of course were absolutely right! I imagined myself as a younger teen saying things like ‘I can’t do P.E. today sir, I’ve got cerebral palsy or ‘I didn’t do my homework miss, I’ve got cerebral palsy’. I actually liked and appreciated their decision not to tell me.
Being an adult with cerebral palsy (with symptoms, which would possibly go unnoticed by most- unless you see (or more likely hear) me walking after a long day at work or I’m too tired to hold my arm down, resulting in what I call ‘palsy arm’) it hasn’t held me back much. From the boy, who needed help speaking and writing, I’m now a health professional, about to graduate from university for the 4th time. I have in the past, temporarily needed to use a walking aid, but this has only helped me gain a huge respect for any of my patients needing to use a Zimmer frame. Trust me, it is really hard!!
I would be really interested to know how other parents have approached talking about cerebral palsy with their children, with more information and less stigma, have times changed?
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