Cerebral Palsy – 8 lesser known facts

It’s now come to the end of March and only the beginning of what is a very difficult time for the whole world. It’s crazy how quickly all of this has happened and feels so surreal… This month has also been National Cerebral Palsy Awareness Month. In some ways it doesn’t feel right to be talking about anything other than coronavirus – is it the right time to be trying to raise awareness? But I started this post a few weeks ago now and wanted to finish it. And perhaps people may want to read something non coronavirus-related. I know writing it is certainly a good way to take my mind off things anyway, so I thought I would go ahead and share this.

Although I have mild cerebral palsy (CP) in addition to dyspraxia, I don’t tend to focus on it in my blog as much as I do on dyspraxia. That’s mainly because I feel my dyspraxia affects me more, something which may be surprising to some as they may assume that CP is likely to affect someone more. That’s one of many assumptions that may be made about CP. Although cerebral palsy is something that almost everyone has heard of, there remain a number of misconceptions about it. So I thought that I’d write a blog post on some of the facts about CP which are perhaps lesser known about. I’ll admit, there are a number of these I didn’t realise myself for a while. There is a reason behind that though, which I’ll mention later in this post.

1. Cerebral palsy is an ‘umbrella term’ – there are different types.

Cerebral palsy doesn’t refer to just one disability, under the category of ‘cerebral palsy’ there are different types. These are: spastic cerebral palsy, athetoid/dyskinetic cerebral palsy and ataxic cerebral palsy (which is the type I have). Spastic cerebral palsy is the most common type. Under the category of ‘spastic cerebral palsy’ there are further subcategories, depending on the number of limbs which are affected. These categories are: monoplegic, diplegic, tetraplegic and quadraplegic. Some people may have more than one type of CP, known as mixed cerebral palsy.

2. CP is caused by damage to the brain, not damage to a person’s limbs.

Although it is said that the different types of cerebral palsy affect a certain number of limbs, it isn’t actually the limbs themselves which are affected. CP is caused by damage to a person’s brain (which is why a number of individuals with cerebral palsy experienced complications at birth) which then affects the way the signals are sent to muscles in the limbs. As Sophia Warner explained in this article, if you gave my arms and legs to someone else they would work fine!

 “I always say that I have brain damage, and that my arm and legs are fine – it’s just the connection. I explain that if I stuck my limbs onto their bodies, then they would work. I explain that it’s just like a stroke but at a young age. People seem to understand this.”

Sophia Warner – Life with cerebral palsy: a Paralympian’s perspective

3. Not everyone who has CP uses a wheelchair or has an obvious disability.  

There have been times before where I’ve told someone that I have CP and they seem surprised. It seems that when you say the words ‘cerebral palsy’ there is this automatic assumption that the person must be severely disabled and use a wheelchair. What people don’t realise is that there is such a wide spectrum of severity of cerebral palsy. Whilst some people may be severely affected and unable to walk, sit up, or talk, that’s not the case for everyone who has CP. For some people, as is the case for me, cerebral palsy isn’t an obvious visible disability.

4. Fatigue is common for those of us who have CP.

As a result of the difficulties CP causes with balance, coordination and muscle movements we use up extra energy when carrying out movements. This means that fatigue is a common difficulty, albeit a hidden one. For me, personally, this is one of the most frustrating aspects too. Sometimes it feels like there is no reason at all for me to be tired but then I need to remind myself that my body is using up more energy than everyone else’s.

5. Many people with CP have an increased startle reflex.

The startle reflex is a reflex that all people have from birth but which normally disappears by the age of six months. However, in CP this reflex can remain. This means that we can appear ‘jumpy’ at certain triggers, including loud noises, in a more pronounced way than others would and at what may seem like ‘smaller’ things. Chloe explained this well in her series of tweets she did a while back about the hidden aspects of CP, I’d definitely recommend having a read of the rest of them!

Screenshot 2020-03-31 at 19.37.18

6. CP can affect our thought processing.

Whilst many people know that CP affects a person physically, what they may not realise is that it can affect our thought processing too and can mean that we are slower to process information. It doesn’t mean that we can’t process information, it just means that it takes us a bit longer than everyone else.

7. Not everyone with CP was diagnosed at an early age.

Not everyone who has CP was diagnosed at a young age. Although it is likely that the majority are, some people aren’t diagnosed until they are older. I, for example, didn’t find out I had CP until I was 13, despite being diagnosed with dyspraxia at a young age. It was then when I began to find more out about CP and how it affects me. Many of these facts I’m writing about now are things I wouldn’t have known before the age of 13, despite having CP myself!

8. CP isn’t progressive but it can vary from day to day.

CP itself is not a progressive condition but some people experience increased difficulties with mobility as they get older as a secondary effect of having a disability which affects their muscle movements. In addition, the effects of CP can vary from day to day – as was a common phrase amongst some friends with CP, some days are just ‘CP days’! These days it will feel like your CP is affecting you more, perhaps you trip over things more or have tighter muscles. It’s often little things – for example, some days I’ll randomly notice I’m more shaky when picking a drink up, some days my legs/feet hurt more quickly than usual and other days I’ll feel really tired and low on energy.

As I mentioned at the beginning of this post, it’s not often I blog about CP. In some ways it can be harder to blog about in relation to my personal experiences, as it can be difficult to tell what is due to dyspraxia and what is due to CP. Even quite a few of the things I’ve talked about in this post are things which overlap with dyspraxia anyway (if you’re wondering what the similarities and differences are between dyspraxia and CP, this is a topic I blogged about a few years ago). I have enjoyed writing this post though and hope that awareness continues to improve! Not so much awareness of the words ‘cerebral palsy’ but awareness of what it means for different people and of those aspects which are not so well understood. Remember how much more there is to a person’s disability than what you may initially think when you hear the words ‘cerebral palsy’!

Stay home and stay safe everyone!

Natalie 🙂

Specific Learning Difficulty vs. Learning Disability – What’s the difference?

Something I so often see in various places – social media, presentations and in general conversation – is the confusion of the terms ‘specific learning difficulty’ and ‘learning disability’, where ‘specific learning difficulties’ are often referred to as a ‘learning difficulty’ or ‘learning disability’. It is something which does frustrate me, as I feel it’s important that both categories of disability get the understanding and recognition they deserve. Equally, it’s something I’m passionate about. I have talked about it briefly in my blogs before but having seen more and more of this confusion, I thought I would dedicate a blog post specifically to cover it. For clarification, this is in relation to the terminology in the UK (the terminology in America is different, which is something I will cover in this post).

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Dyspraxia and Organisation – A different perspective

Disclaimer: This is just my personal experience and, although some dyspraxics may be able to relate, it certainly isn’t the case for everyone. For many dyspraxics, organisation is something they struggle with a lot.

One of the common traits of dyspraxia is difficulties with organisation, which I can relate to to some extent. However, a comment I have had on more than a few occasions is “Wow, you’re so organised!” This isn’t something you would commonly associate with dyspraxia, but for me I feel that having dyspraxia has actually contributed to me being more organised.

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Plastic straws – but what about us?

This is a topic that I’ve been wanting to write about for a while. Although it is something which isn’t discussed as much in the media now as it was a couple of years ago, it is still an important issue – particularly for those of us with disabilities. And I’m not talking about the use of plastic straws, I’m talking about the fact that they have been banned.

Initially, when there was talk about reducing the use of plastic straws, with some news articles stating that they would be banned, I didn’t think that much of it. Surely it was just an idea that had been taken out of context? They couldn’t just ban plastic straws altogether without coming up with a suitable alternative…

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Dyspraxia and Maths Difficulties

Happy New Year everyone! I honestly can’t believe I have now been blogging for over 5 years! Although I haven’t posted as much recently, I’m hoping I’ll be able to be a bit more active on my blog this year. This post is one I actually started writing earlier last year, back in March! My Master’s, particularly my dissertation, then kind of took over and I just never got round to finishing it. This post is in fact related to my Master’s though, as it’s based off something that was mentioned in one of my lectures (I was sat there in the lecture trying to not get distracted by planning this blog post in my head…). The lecture was on number development, where it was mentioned that individuals with dyspraxia often show difficulties with maths and the reason behind this was explained.

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Dyspraxia, self-understanding and acceptance

A couple of weeks ago I attended the Dyspraxia Foundation adult conference in Birmingham. It was a great event with some brilliant speakers and really important messages. One of the key messages put across by a few of the speakers was the importance of self-acceptance and understanding. It was said that, due to dyspraxia being a hidden disability which isn’t very well known, in order to be able to advocate for yourself you have to have an increased self-understanding of what dyspraxia is and how it affects you. In addition to this, the importance of self-acceptance was also emphasised, particularly its importance for your wellbeing.

Coincidentally, this is a topic I had already begun to write about. Everyone’s journey of self-understanding and acceptance is different for all sorts of reasons. This could include the age at which you were diagnosed, your experiences at school, along with many other factors. I am thankful for the fact that I was diagnosed with dyspraxia at a young age (3 years old) so it’s something I’ve always known about. Many individuals with dyspraxia aren’t diagnosed until later on in life and I can’t imagine how difficult that must be. I’ve heard some people say that when they are diagnosed it’s almost like a lightbulb moment – it explains why they do things in the way they do and everything suddenly makes so much sense.

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Dyspraxia Awareness Week 2019 – 10 Things I Wish People Knew About Dyspraxia

So, it’s been a while! January, in fact, was the last time I blogged! It’s been a very busy year for me as I’ve been studying for my Master’s degree. Normally I get to have a break over the summer, but my dissertation was due at the end of August – so not this time! A week after submitting my dissertation, I started my new job as a Learning Support Assistant. So now I’m getting used to the routine of that, I’m hoping to start blogging more regularly again. I have missed blogging!

What better timing to get back into blogging than now, with it being Dyspraxia Awareness Week this week? The focus of this year’s awareness week is adults. So, as an adult who has dyspraxia – I thought I would write a blog on 10 things I wish people knew about dyspraxia. Generally, I have found that as I’ve got older I have been surrounded by more understanding people – so some of these things are based more on past experiences. Other things come from knowing others with dyspraxia and the experiences they’ve had. Nonetheless, they are still things that I feel are important for people to know about dyspraxia.

Continue reading “Dyspraxia Awareness Week 2019 – 10 Things I Wish People Knew About Dyspraxia”

As soon as I saw that Melanie Jessica was looking to feature a few bloggers who have less spoken about difficulties, such as dyspraxia, dyslexia, autism and ADHD I thought it would be a great opportunity to raise awareness! Here’s the post I’ve written on dyspraxia: https://melaniewithanie.com/2019/01/30/dyspraxia/

I really enjoyed writing this post! Well, I enjoy writing all my posts (of course!) but it was great to go back to how I started my blog – with giving a more general overview of dyspraxia.

Hope you enjoy reading it!

Natalie 🙂

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