When you have cerebral palsy you cannot escape the fact that health professionals will be a part of your life. You will meet them in loads of different health departments, often seeing different people within one department. Also, with certain aspects of CP (like vision or speech impairments) mean you will be referred from one person to another. Trusting the health professional’s advice may be hard if this is a new experience for you, or if you feel they do not see the full picture – so here is my advice to health professions when having a patient with cerebral palsy.
We live in our bodies 24/7 so knows what works, and what doesn’t. So is the advice we get given sometimes unrealistic or unhelpful? Cerebral palsy is a massive spectrum of a condition and affects everyone completely different. This is one aspect which can be challenging when listening to health professionals. Sometimes I wish they would listen to what we have to say and not just what typically should be happening with our progress.
This was apparent when I was younger; it was all about meeting milestones and keeping on track. Yes, I appreciate this is important, but it is not always possible to do everything correctly. Similarly, I clearly remember being told by my Year 4 teacher that if I practised my 8 times tables then I would learn them. At the age of 19, I still do not know my 6, 7 or 8 times tables, nor can I tell the time that well- not that it stopped me getting a maths GCSE or getting into university! Yet when I was younger I believe what this teacher had told me, I felt like I had failed every time it just didn’t work.
Another piece of advice that I would give health professionals would be to expect cerebral palsy to change. I know it is considered a non-progressive condition, and this is true for the brain damage that causes the condition itself. However, I know from first-hand experience that CP can change the way it affects your body. I also know that I am not alone in experiencing this. Cerebral palsy can often change as we grow, with me dreading growth spurts as it would just make my muscles even tighter. When we say this is not our ‘normal’ and we feel that things are starting to deteriorate please take us seriously, even if it is ‘what you expect from cerebral palsy’. At the end of the day, we want our bodies to be as functional as possible and know when things aren’t the best that they can be.
Cerebral palsy may be a physical disability, something that can impact many physical aspects of our life, but please don’t forget the mental side to any physical condition. It can be extremely frustrating when we feel stuck in a body that doesn’t seem to listen to us. Unfortunately, there is only so many times we can trip up over our own feet and find it funny. Despite our positive attitudes it can become too much at times. So if we seem quiet or distant please keep in mind this is probably not due to us being uninterested, merely just the fact we have gone through this process many many times before. We really do appreciate what you do for us.
Thank you to all the professionals who make our lives easier. You will never know how much you really do help and the vital differences that mean we can live a fuller life.
To find out more about my educational journey please visit my blog at http://cpstudentblog.blogspot.com.au