What would I tell a parent of a child with Cerebral Palsy?

I cannot begin to imagine what it is like to hear the words "your child has cerebral palsy" because I have always been the one to have CP, and I guess it is all I have ever known, but does that have to be a bad thing?

Initially, it is probably expected that you will have thousands upon thousands of questions about expected progress, attainment, abilities/ disabilities, meeting milestones and so much more. Now if you have been in this situation I expect you know that these questions cannot be answered in any great detail- with the vast majority left to the 'waiting game' and approximations made. Like any ordinary parent, you may research CP in the hope of finding these answers or at least a bit of support in this new unknown world for you and your child. Everything I can tell you is purely based on experience over the last 18 years (as CP is unique to everyone and part of quite a large spectrum), but I hope it can at least give you a possible glimpse into the future: highs, lows and everything in between.

1. They will surprise you 
A very baby Chloe!
Doctors have a way of airing on the side of caution and making predictions based on little information right from the start. However, people with CP are often determined, even a little bit stubborn, to challenge these predictions which they have been given. I may not have received my CP diagnosis until the age of 7 but being 8 weeks premature made even surviving a matter of fighting the odds. At at that moment in time, it would have been impossible to write the next 18 years and all the challenges which have come my way, but also all of the victories- because there has been plenty of them! It may have taken longer to walk, run, ride a bike, tell the time..... but woe betide anyone who says I cannot do anything. Even if it may take them longer, I guess that can make it even more special when they get there. Your child will have their own unique of milestone and their own victories, no matter how small this is. 

2. There will be frustration 
Love- hate relationship with an AFO
I would be lying if I was to say it was all plain sailing- but isn't that the case with everyone? The hospital appointments, the physio- therapy, the urge to fit in with peers. At times, it can be incredibly difficult and I can ensure you that many tears have been shed on the subject. When I was younger I was such a girly- girl, EVERYTHING had to be pink and pretty- trainers and a splint didn't really fit the look I was going for.... all I wanted was nice pretty shoes. The hours which would be spent in shoe shops (maybe even a few shoes thrown in sheer anger as the 'perfect' pair of shoes wouldn't fit over my newly cast AFO splint). Or maybe the frustration will come from coming last at a sports day running event when all you wanted to do was win for once. People with CP are resilient, we have to be, but that doesn't mean it is all progress.
Family on holiday :)


3. Family and friends are all the support they will need 
The support which you can get from friends and family can be fundamental. At the end of the day, we all need a little helping hand- I guess some people just need a little more help/ support. Also, I have found that having friendships with other young people who have CP can be incredibly valuable. The opportunity to share similar experiences/ advice and to know you are not alone in all of this can certainly help when you are having a rough day. By having other people with past experiences (who may even be older than you) can be another possible glimpse of how things may be. For example, I am currently planning university (along with the challenges which may occur) and I have found speaking to other young people who are at university at the moment really reassuring and supportive about this.

4. They will be amazing at adapting 
Handstand and AFO- no problem!
Who says that you have to do everything just like everybody else? From personal experience, I know that sometimes it is actually easier to do things in your own way- in order to get the same result as everyone else. This could be mastering tasks with one hand (left- hemiplegia!), that includes tieing shoe laces or eating a meal. Adapting is often part of every day and at times can be difficult to come up with solutions, but you do get there. For some people adapting can include the use of certain equipment in order to gain independence, and from experience I know this can sometimes result in a love- hate relationship. However, it can allow loads more freedom and the ability to achieve much more- it can just take time to adjust to these adaptions.
We take everything very serious....

5. Humor will get you through 
Sometimes you just have to laugh, even if that is just so you don't cry. Laugh at the fact that you have ended up on the floor.... again! or laugh at the fact you did something and might have looked a bit silly. Yes, at times this can be hard, and laughing isn't always the answer- but it will certainly help. "When you find humor in a difficult situation you win" I believe this is so true and certainly a quote to live by!

6. The diagnosis is a very small part of your child 
Because who doesn't want a selfie with Minnie!
Your child is not the diagnosis which they have been given, they are not solely the label put on them without permission. First and foremostly, they are your child, who just happens to have Cerebral Palsy, just like they happen to have blue eyes or brown hair! A diagnosis may seem like it is taking over at times but really it is only one piece of the thousand piece puzzle which makes up a child. Having Cerebral Palsy can open so many doors and opportunities, it can make your child unique in the best way possible. The diagnosis is what you make of it, and if I was to pass on one piece of advice it would be to turn those obstacles into opportunities, don't look back and never ever put a limit on what you can achieve.

~ Chloe x

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