My journey growing up with Cerebral Palsy: The Early Years

 

Growing up with Cerebral Palsy (CP) presented many challenges, but it also shaped me in ways I could never have imagined. It took me decades to truly understand and accept my condition. Here, I share my journey through the early years, my school experiences, and the lessons I've learned. 

Early Years and Physical Therapy 

From a young age, I was immersed in physical therapy. Weekly sessions were a part of my routine until I turned 11. These early interventions were crucial for my physical development and instilled a sense of perseverance within me. Through the support of skilled therapists, I learned to push my limits and celebrated every small victory. 

School Life: A Mixed Environment 

My educational journey began in a school that embraced both disabled and able-bodied children. This mixed environment taught me the value of diversity and inclusion. It was a place where differences were acknowledged, yet everyone worked together towards a common goal. I was fortunate to be among the first wave of children with disabilities integrated into my local mainstream school around my 10th birthday. This experience was both exciting and daunting, opening up new possibilities and challenges. 

The Boarding School Experience 

Transitioning to boarding school was a significant and difficult chapter in my life. Being away from home was a stark change, and unfortunately, I faced bullying, which made the experience even more challenging. Feelings of homesickness were frequent companions, but they also taught me resilience. Despite these struggles, I learned to advocate for myself, a skill that continues to serve me well. 

Finding My Footing

The year before what we call GCSEs in the UK, I changed schools once more. This new environment proved to be a turning point. The supportive atmosphere and understanding peers made a world of difference, allowing me to cope better and focus on my studies. It was here that I began to find my footing and gain confidence in my abilities truly. 

Lessons Learned 

Looking back, these experiences have taught me invaluable lessons: 

Resilience and Perseverance: Every challenge I faced built my resilience. I learned that setbacks are not the end but an opportunity to grow stronger. 

Advocacy: Speaking up for myself became a crucial skill, empowering me to seek the support and accommodations I needed. 

Inclusion and Empathy: Being in diverse environments fostered a deep sense of empathy and a commitment to advocate for inclusivity. 

While my journey with Cerebral Palsy has been filled with ups and downs, it has shaped me into the person I am today. Each experience, whether difficult or rewarding, has contributed to my growth. I hope that by sharing my story, others may find solace and inspiration in their journeys.

Clinical Depression With Cerebral Palsy

Cerebral palsy is my main disability but as I have mentioned for me clinical depression is one of my secondary health concerns.

More often than that though it is the feelings because of my disability that cause me more problems.

It causes me to feel like I can't be bothered to write or anything. I can't even read or watch TV. Sometimes I eat as much as possible or nothing at all. Which in turn makes me feel guilty for not doing anything. This means that it often is a vicious cycle and why I have not written much.

The move and settling in to my new house has caused some unforeseen problems physically with my body and cerebral palsy which is why I have not written as much as I would have liked or needed to make this site professional or financially respectful. 

However I don't do it for the money, I do it for the chance to teach people about life with cerebral palsy and what comes along with it. So in the next series of posts I will be going through how both bits affect me. I hope you get information about how one or both affect my life. And maybe understand both or just one of the conditions. I hope you learn or understand a bit more about life with cerebral palsy and what comes along for me. 

Moving forward with cerebral palsy

Cerebral palsy is a neurological disorder that affects movement, muscle tone, and posture. Living with cerebral palsy can present challenges, but with the right mindset and support, it is possible to move forward and live a fulfilling life.

One of the first steps in moving forward with cerebral palsy is to develop a positive mindset. This means focusing on what you can do, rather than what you can’t. It’s important to remember that everyone has limitations, and that having cerebral palsy does not define who you are as a person. By focusing on your strengths and abilities, you can build self-confidence and a sense of purpose.

For me this is the blog and ability to talk about my conditions. Both cerebral palsy and endometriosis. From a personal point of view. In order to educate others.

Another important step is to build a support network. This can include family, friends, healthcare providers, and community organisations. By connecting with others who understand your challenges and can offer support and encouragement, you can build resilience and overcome obstacles. I was always taught "there's no such word as can't"

Physical therapy and assistive devices can also be helpful in managing the symptoms of cerebral palsy. Physical therapy can help improve mobility and muscle strength, while assistive devices such as braces, walkers, and wheelchairs can help with mobility and daily living activities. It’s important to work with healthcare providers to find the right treatment plan for your individual needs.

Education and employment opportunities can also play a key role in moving forward with cerebral palsy. There is a lot more to do in this section as it's not always considered as an adult condition.

Pursuing education and career goals can provide a sense of purpose and fulfilment, while also improving financial stability. It’s important to advocate for yourself and seek out opportunities that align with your interests and abilities.

Finally, it’s important to practise self-care and prioritise your physical and mental health. This can include getting enough rest, eating a healthy diet, staying active, and seeking out mental health support if needed. By taking care of yourself, you can better manage the challenges of cerebral palsy and live a full and meaningful life.

This is why at times I don't post. As I feel mentally drained because my CP has caused problems either the night before or days before. And more often than not endometriosis has also interfered

In conclusion, living with cerebral palsy can present challenges, but with the right mindset and support, it is possible to move forward and live a fulfilling life. By focusing on your strengths, building a support network, accessing appropriate treatment and assistive devices, pursuing education and career goals, and prioritising self-care, you can overcome obstacles and achieve your full potential.

For me this is having a fantastic family of my own and my blog here, podcast and books which you can get from Amazon.

As I have said I'm in a bit of a stable place at the moment so I will be pivoting slightly on the blog back towards things I like and do as I had been through different things all mentioned here in previous posts. What have I got planned for now regarding the blog? You will have to find out by reading more.

When everyone else's dream is not your own

It can be difficult when your dreams don't match up with those of your peers or the people around you. It's important to remember that it's okay to be different and to strive for something that is uniquely yours. 

Don't be afraid to take the road less travelled and to follow your own path. You may find that it leads you to a place that is even more amazing than you ever imagined.

So what is stopping you?

The biggest thing stopping me is feeling overwhelmed by the task at hand. I'm trying to break it down into smaller steps that I can focus on one at a time, so that I can stay motivated and make progress.

And this has been most prevalent with the move that is coming up. Which is why I have been mentally exhausted and unable to write or even record my podcast when I know that I should. 

But I thought while in a bit of nomansland regarding it I thought what the heck. And thought that knowing and accepting that my dreams are different to everyone else would make a good post. 

Realising that my dreams are different.

In my last post a longer wait than I thought! I mentioned the situation and what's happening so I won't mention it again. 

But realising that my dream is not the same as everyone else is ok. 

There are people who have disabilities such as mine, cerebral palsy, and are able to get the dreams that most people aspire to but I never aspired to what was expected of me by my peers. 

Because of the uncertainty of what cerebral palsy does to the body as you get older. Each case and person is different. It is also not very well documented about the adults who have cerebral palsy as it is considered a childhood disability. 

Which is why I am here to show people how the condition affects people on a personal level as I age. I have written previously about what happens in a broad sense in the seasons and how they affect the body with cerebral palsy. And its series.

There is so much more!

There is so much more because everyone has a reason to be on this planet. 

I think I know that my reason is to be a voice for those who don't. And to help those who have family with the condition. But they feel that they don't understand what the condition is and how it affects us from a personal view. 

And that's part of my dream to be that voice and bridge between.

What next?

So although it is a quiet and stagnant time. Along with personal feelings of inadequacy and depression because of the situation I really wanted to write this post and be positive for the future.

For the future?

Well this at the moment is completely uncertain. And I can't plan ahead too much. That is doing my head in to a degree because I can't. Then again I know it is a lesson that I need to learn. So I am taking each day as it comes.

My hope!

Is that there will be some sort of stability after the holidays and that the home that I have will be the one. but if not then it's ok! Because nothing is truly final.

So what is next?

My aim is to continue writing about what is happening throughout this period. And beyond because that is my dream.

Cerebral Palsy A disease or condition

 Disease or Condition

So there are various ways that cerebral palsy has been boxed as either a disease or a condition. Below are the definitions by dictionary.com of each word or group of words.

Disease

noun

a disordered or incorrectly functioning organ, part, structure, or system of the body resulting from the effect of genetic or developmental errors, infection, poisons, nutritional deficiency or imbalance, toxicity, or unfavourable environmental factors; illness; sickness; ailment.

any abnormal condition in a plant that interferes with its vital physiological processes, caused by pathogenic microorganisms, parasites, unfavourable environmental, genetic, or nutritional factors, etc.

any harmful, depraved, or morbid condition, as of the mind or society:

His fascination with executions is a disease.

decomposition of material under special circumstances:

Condition

a particular mode of being of a person or thing; existing state; situation concerning circumstances.

state of health:

He was reported to be in critical condition.

fit or requisite state:

to be out of condition; to be in no condition to run.

 

Cerebral palsy

noun Pathology.

a form of paralysis believed to be caused by a prenatal brain defect or by brain injury during birth, most marked in certain motor areas and characterized by difficulty in control of the voluntary muscles.

My thoughts

As a person with cerebral palsy, I don’t consider it as a disease as it's not like an illness such as a cold or cancer which has two different options of either getting better or not.

I use those examples as the simplest form of the disease because they are the most common. Although there are many more.

But cerebral palsy in my point of view is a condition as the initial brain damage has already happened but its secondary effects continually change as the person gets older. 

It also means that there are differences in every different case of cerebral palsy and there is no way to cure a person with it. Whereas with a disease you can be cured or not. But a condition you live with. 

And things change daily and you either have a good or a bad day. And you have to continue with whatever you are doing. The same goes on with people with fibromyalgia or MS and other lifelong conditions. Whereas someone with some types of cancer has limited time, not decades. Although that is possible.

The Effects of Cerebral Palsy

I talk about those throughout the whole of this blog as I live with the condition and the following is a list of some of the posts

What is spastic cerebral palsy?

Ataxic Cerebral Palsy What is it?

Life with diplegic mixed cerebral palsy

Common Questions for me

And many more just check them out.

Final Thoughts

So you see it's slowly changing as the effects are less evident unless the initial brain damage is severe enough when the cerebral palsy is spotted. Especially if the condition happens as a baby during the early months. Or when it occurs from an accident later.

But also seasons and age affect the way cerebral palsy reacts within the body. This is mentioned in the series of posts that started with The Seasons and how they affect cerebral palsy. 

I hope you see my point of view and understand why I class it as a condition, not a disease.

The Seasons and How They Affect The Body With CP

 

What do I mean!

In the next series of posts, I am going to be going through the ways how the seasons affect the way cp affects the body on seasonal and weather types. This will include the way the affects the muscles and moods.

The following is brief outlines of each post. That will be up weekly.

Winter:

This is a particularly hard season, for many of us with cerebral palsy. As its weather and temperatures affect us quite severely. I will be discussing these in the next post. Which is out next week.

Spring:

This post is about the way this seasons weather and temperature affect us.

Summer:

Again this post is about how the season in all its types and how it affects the body when it has cerebral palsy.

Autumn:

This will be the final post about how the affects the body with cerebral palsy in the series although I have posted about the way ages affect the body with cerebral palsy. These areas follow:

• Challenges Ahead Part 1

• Challenges Ahead Part 2

And in this following series that starts with the following  about Depression and Cerebral Palsy

Final comments:

I hope you enjoy these posts.

CP and depression in your 30s

So the 30s have hit and you’re feeling low again:

So looking at what you have and the thought of why you. And the feeling of being a burden is another problem because you are not able to do things that the people who you live with can. 

Remember that these are also issues that occurred when you were a child, teen and in your 20s 

Ok, the feeling is there again!

This is when you are going through another bout of depression because of the feelings. But you are not alone. There are lots of people who are in the same box.

What to do?

Ok so the feelings are there and you've been given all the cues to get the help in your 20s. Now is the time to use them again. 

If on the other hand, you're reading this post then it's ok. I've been through the same things and didn't know anything until I was in my 30s 

What I did!

It was at this age I finally started getting the help I needed.

I was diagnosed with clinical depression at this point. So I was put on medication. I also went through a course of counselling. For a long time, I managed to be content enough and came off the medication. 

When my family grew and my children were eventually off to school I noticed that my body has started to get a bit more worn. Slowly I also noticed that I was getting more and more tired. However, I ignored all the warning signs and carried on and let life take over.

In that sense, I should not have left myself got at this point but I did. For some of the stuff I was dealing with I got healing thanks to the counselling but there were things I was dealing with and didn’t know.

If you have those sorts of feelings realise that everyone has these and it doesn’t matter if you have a disability or not.

Last words

My thoughts are if you have not got the help you need then push for it but if you have it then use it. There are so many apps as well that can help you. But not everyone is the same so it is best to search on your phone and try as many as possible till you find the ones that work for you.

Moving forward with Cp

Ok so you have a child with Cp:

Or you are a young person with the condition. There will be lots of people who are older than you. These people have the best intention in the world and yet get things wrong particularly about your condition. These people may be members of your family but don’t understand the condition. They may think they don’t. You must realise this.

Comments they make:

• Close your legs.

• Come on hurry up!

• You can do better than that!

• Pick your feet up.

• Stand still.

These are just some of the ones I have encountered growing up. Even now decades later these confuse me.

You may wonder why I say that. You’ll see.

Growing up and feeling out of place!

Whether you are a single child/part of a bigger family that you live with. You are a member of the family who is reading this with another member with cerebral palsy. Take in mind what is said as it does not matter what people say. There is always a sense of being out of place because we are not classed as normal. There are signs of it in every part of life. This includes clothes, looks, dreams, work, movies,  how we eat and drink, how we speak. But the thing is we are the same as everyone else but parts of our body don’t work the way we want. That can be a real pain sometimes. I want to make sure that everyone understands that it is not always easy to do, what is expected of them because it is not part of their dream. it could be completely different to what is expected. 

What is normal?

What is the question of being normal? Because being normal mean nothing? As a human being. I would have thought being able to give some purpose to the world and each other was better than not being able to do anything or being criticised. Some people who think that being different is not ok are wrong. Wanting to be normal is is a perception and that means being yourself is not acceptable. There are options to be sure to show that being yourself is better than being what everyone else wants. Because it proves that you are what you are meant to be no matter what.   the whole system of being normal is also being portrayed too much on TV  and film because there are not people enough people should I say who are betraying people who are different and this is where the perception becomes the norm.

Growing up!

Personally, I had very much the perception of wanting to be normal but then questioning that whole thing because I was on my own a lot. I watched a lot of TV and films where sexism and racism were the norms and it is not in my eyes until I was older that it made me question myself because  I am different because of cerebral palsy. Growing up despite being an only child and was treated no different than everyone around me. I found it incredibly difficult because I thought I was normal and was able to do stuff but later found that actually, I couldn't. And that made things very difficult and depressive for me because of the feeling of inadequacy.

Trying to be a people pleaser and follow their example makes it very hard on yourself and I have learnt this myself. Now shows that actually being yourself is stronger than r following the Sheep in human Society as a whole. Although at times of medical interventions such as the pandemic right now it is best to follow the guidelines. however, it does not stop you from being yourself within the confines of society.

Teaching people that being different is ok!

Being yourself and showing that being different is out is ok and good for the environment and for Humanity shows that equality in the human race can be done. It may sound stupid but there are still people who perceive that different is not ok and it makes it harder for those of us who want our own dreams and goals to be heard very hard to actually be heard to get what we want within our life.

What next?

What Next? is the question that should be on everyone's mind right now but in every situation. However, cerebral palsy and other disabilities need to be shown that they are accepted and we are valued because whatever is said meant by family members and others make us feel that we're not. So what is next? They might even try and say that but they're trying to help but actually, they're not! The best thing for you to do is firmly but politely say sorry I can't do that. Because the more people learn about the condition and other conditions will be able to be more accepting of other people.

Final thoughts

My final thoughts on this would be to educate people and educate people continually until it is done. however, I don't think it will be at least in my time but hopefully, in my family's next generation. There is such a long way to go to make equality for everybody on this planet.