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Category archive for: Does it wet the bed?

Why I love being a trustee of Cerebral Palsy Sport

Posted in Cerebral Palsy, Disability Awareness, Disabled Access, Does it wet the bed?, Fighting for Change, Making a difference, My writing, and Personal

At the book launch of my memoir, Does it wet the bed?, someone happened to mention to me a Charity, Cerebral Palsy Sport and how they were looking for new trustees. I almost dismissed the idea; I had never been a sporty person, much to my regret. I wasn’t sure how much I’d have to offer such a charity.

Then I thought back to my time working for another disability charity who focused on helping disabled people into employment.  As an employee, it was sometimes frustrating as I’d have a vision for how I thought the organisation should go but no real authority to influence it’s direction.  When the charity struggled financially and my job was hanging by a thread from month to month, all I could do was do my job and hope funding would come our way – even though I had endless ideas for stabilising the charity and indeed, expanding it.

So I realised it didn’t matter that I didn’t spend my weekends by the side of a pitch – what mattered was I had the drive, the passion and the enthusiasm to make a difference to a charity. I could help other people with Cerebral Palsy to reach their sporting potential and that was what inspired me to apply.

I was thrilled to take up my role as Trustee last January and though it’s a big responsibility, I can honestly say that I’ve loved every moment so far.  I’ve put my current skills to good use and am continually developing my skills and experience, which will only strengthen my CV.  I’ve met some brilliant people and most of all, I hope, I’ve made a difference for the people using our services.  Every day is different, challenging and rewarding – even it is just a simple “thank-you” and a smile.

Yes, the role takes up my time. The usual commitment is 6 Board Meetings per year, plus 4-6 Sub-Committees Meetings per year but if you have this time to give, there’s nowhere better to give it! All your expenses will be paid and you’ll be invited to some brilliant sporting and fundraising events that are family-friendly and lots of fun!

So why not come and join us?!  To apply to be a trustee, please follow this link or you can contact me for a chat if you’d like more information.

Challenges of a Disabled Mum: Finding support & information

Posted in Cerebral Palsy, Disability and kids, Disability Awareness, Disabled Parent, Does it wet the bed?, Family, Motherhood, My writing, and Personal

Before I became pregnant with Jack, I wanted to see a medical professional who would be able to advise me on the impact that pregnancy might have on my condition, Cerebral Palsy. I wasn’t naive, I knew it would be physically tough but I wanted reassurance I suppose, that it was possible and I wanted advice on the birth. Would my spasms and general movements make a natural delivery difficult?  Would I be able to have an epidural if I wanted to? Most of all, I knew what I wanted – reassurance that the events of my own birth, which caused my CP, wouldn’t repeat themselves. I knew it was unlikely, I knew there were no guarantees in life but I also knew talking to a professional about my fears would at least help in belittling them.

But despite asking my GP and searching online, I couldn’t find anyone who seemed to specialise in supporting disabled mothers. Eventually, we decided to go private and booked an appointment with a Harley Street Consultant in Obstetrics. He specialises in high-risk pregnancies, though thankfully he assured me that I wasn’t high-risk at all!  He assured us that a natural birth would be entirely possible and that my CP shouldn’t impact much at all.  He said an epidural shouldn’t be an issue and even recommended it. We were left wondering why we’d troubled him at all!

Nonetheless, it was just what I needed to hear and shortly after that appointment, I became pregnant.  At this point, I began looking for other types of information and support.  I wondered how I would cope with feeding, dressing, changing nappies and though I was aware of a couple of other disabled parents, panic set in!  Just how would I manage?!

But again, finding information was absolutely fruitless. It was as if disabled people just didn’t have children, like it wasn’t normal. Most of the support I found was for parents of disabled children and not the other way around.  I emailed the Disabled Parent’s Network but never received a reply and their website didn’t really provide much insight into the practicalities of being a disabled parent.

When our gorgeous boy finally arrived, I still wasn’t exactly sure how I’d do things but with the enduring support of hubby, I was determined to find MY way and in fact, it’s amazing how quickly and instinctively I learnt. I wore holes in all my jeans pushing Jack around the house in his moses basket because I couldn’t lift and carry him.  As he got bigger, my knees continued to suffer as I carried him short distances whilst walking on my knees!!

Although I developed my own ways, I still think it would have helped my confidence to talk to other disabled parents and chat about how they manage. That’s why I wrote my book and started this regular blog – even now, there needs to be much more awareness of disabled people and what we’re capable of.  We should be sharing our stories, good and bad, in order to support and encourage each other.  And as always, society as a whole needs to be more aware, as many people have been very surprised to learn that I’m a mummy!

If you’d like to share your story as a guest blogger, I’d love to hear from you!

Writing is lonely but feedback helps!

Posted in Cerebral Palsy, Disability and kids, Disability Awareness, Disabled Parent, Does it wet the bed?, and Family

I love writing and always have. I remember being in the final year of primary school and winning a writing competition for a short story.

My last book, “Does it wet the bed?”, had been in my head for years before I finally began putting it on paper.  For those of you that might not have read it yet, the book tells my story of living with Cerebral Palsy and becoming a disabled mum. Though emotionally difficult at times, as I relived painful events, the book was relatively easy and a joy to write.  Though I wanted to get a message across and raise awareness of Cerebral Palsy, writing my life story was also therapy. It gave me fresh perspective and helped put to bed issues which had played on my mind for years.

My new book is a children’s book which I hope will help to educate kids about disability and encourage them to ask the questions that come to mind.  It’s very different to my first major writing project – a complete shift in mindset is needed. I’m not writing for myself anymore and am constantly trying to think like a child!  From the words I use, to the style and overall message, it all has to appeal to a world that I’m struggling to remember!!  There’s also other issues, such as the illustrations to think about so the process of producing this book is very different to the first. It’s been said that writing is a lonely job and it’s easy, I think, to lose confidence in yourself and your work.  But I’m so passionate about the fact that kids need to understand these issues in order to help shape their future attitudes. That’s what keeps me going when the doubts try to put me off.

However, reading to my little boy Jack, is helping in focusing my mind and generating ideas. Though I’m aiming my book at children slightly older than Jack, his school have kindly agreed to “test drive” the book and provide some valuable feedback.

I’d welcome hearing from other parents and children who would be happy to do the same! Please contact me if you’re willing!

Yes, I’m Disabled but don’t think I’m stupid

Posted in Cerebral Palsy, Disability and kids, Disability Awareness, Disabled Parent, Does it wet the bed?, Equality & Diversity, Family, and Fighting for Change

It’s 2016 and I’ve now been living with Cerebral Palsy for 33 years.  Attitudes towards disability have changed and largely improved over that time. Yet, it still amazes me how ignorant some people can be and resist being educated.

Yesterday, I was out and about with my mum who has always insisted that she will not speak for me – if somebody wants to know something, they can ask me, not her. As we waited for a bus a fellow passenger asked mum if I was her daughter. Mum politely confirmed that I was, before being asked the old age question, “How old is she?”

I quickly told the woman my age, hoping she would get the message that just because I have a disability, it doesn’t mean that I can’t speak for myself. Far from!  Anyone who knows me or has read my memoir, will know I have my own views and opinions and that I’m not shy in voicing them!

I was hoping to have made my point with this lady but sadly she hadn’t got the hint. She continued to quiz mum about me as if I wasn’t even there! Having experienced this type of ignorance more times than we would have liked, Mum and I were both mildly irritated but also amused by the woman’s inability to take a hint.

Mum decided to put it bluntly: “Actually, SHE is a university graduate with a 2.1 honours degree and is also a married with a child of her own!”

“Where’s her child now then?”

Argh!!!! Some people will never understand or even attempt to put themselves into my shoes but if you’re the lady at the bus stop reading this, let me say this:

 Yes I am disabled, No that doesn’t mean I can’t think or speak for myself, and No it doesn’t entitle you to ask me personal questions that are none of your business!

How many other complete strangers at the bus stop did you ask their age?!

Cerebral Palsy: An Introduction

Posted in Cerebral Palsy, Disability and kids, Disability Awareness, Disabled Access, Disabled Parent, Does it wet the bed?, Flyinglady Training, and Making a difference

This month is Cerebral Palsy Awareness Month so I’m going to be sharing a number of articles to raise awareness of the condition, what it’s like to live with it and the challenges that it presents.  Later this month, I’ll also be sharing advice for parents who have a child with CP and maybe some of my favourite bits from my memoir about living with the condition – “Does it wet the bed?”

What is Cerebral Palsy (CP)?

Cerebral palsy is a general term for a number of neurological conditions which affect movement and co-ordination.

Cerebral Palsy is caused by problems in the parts of the brain which is responsible for controlling muscles.  The brain becomes damaged either before, during or just after birth, or sometimes, during early childhood.

What are the three main types of CP?

Ataxiaa lack of muscle control when performing voluntary movements.  (National Institute of Health, 2011)

Spasticity Causes stiff or tight muscles and exaggerated reflexes.

DyskineticCharacterised by fluctuation in muscle tone which is either too loose or too tight.

What are the causes of CP?

  • An infection caught by the mother during pregnancy;
  • A lack of oxygen;
  • A difficult or premature birth;
  • Bleeding in the baby’s brain;
  • Changes in the genes that affect the brain’s development.

 

There will be lots more information coming over the next month, but if you’re a business who would like free staff training on Cerebral Palsy, please Contact Flyinglady to book your session.