Skip to content

Category archive for: My writing

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!

I’m just Mummy, despite my disability

Posted in Cerebral Palsy, Disability and kids, Disability Awareness, Disabled Parent, Equality & Diversity, Family, Making a difference, Motherhood, My writing, and Personal

My little boy is now three and a half and he really is the apple of my eye. To Jack, I’ve always been just Mummy.  It doesn’t matter that my speech is a bit funny or that I walk differently to everyone else. My wheelchair is just part of me and Jack doesn’t care about any of it, all he cares about is Mummy’s cuddles!

He’s grown up with my disability and although he’s starting to realise my limitations, they thankfully don’t matter.  I’m his mum and that bond is as you’d expect, as strong as any other mother/son relationship.

I know there may come a day when Jack will ask questions about my disability and I’ve been giving a lot of thought as to how I might answer them.  With honesty and humour, that’s my plan. I want Jack to be able to ask any question he wants and know he’ll get a honest answer.  I don’t want a lack of knowledge to make him fearful of anything in life.

That’s what has inspired the book I’m currently working on. Too many children are not exposed to disability and then when they do come across it, they are unsure what to do. I’ve overheard so many conversations,  where a child is asking mum or dad why I’m in a wheelchair or why I speak like that. The parent’s embarrassment often leads to both a hushed and a rushed response and I think children need and deserve more if they are going to be equipped to manage situations in the future.

As well as raising disability issues within the context of a story, my book will also offer nuggets of advice for teachers and parents, who may understandably struggle to answer those awkward questions. I hope it will enable children and parents to initiate open, honest and fulfilling conversations which help to satisfy children’s curiosity and give them both much needed “disability confidence”.

Watch out for further information, title and release dates!

Meryl Streep should be applauded for challenging Mr.Trump

Posted in Accessibility, Cerebral Palsy, Disability Awareness, Disabled Parent, Media, My writing, and Personal

I don’t normally write about anything remotely political on my blog – preferring instead to make the odd rant on Facebook, if something really bothers me.  But this week, something and someone political has tipped me over the edge because it’s more than just politics – it’s about equality.  Anyone know where I’m at yet?

Yes, that’s right: Donald Trump, our US president-elect. Meryl Streep has used her Global Globe acceptance speech to attack Mr. Trump for mocking a disabled journalist working for the New York Times, Serge Kovaleski, who dared to report on Trump’s claim that thousands of US Muslims celebrated the collapse of the World Trade Centre.

Streep said she was heartbroken by Trumps imitation of the journalist and I absolutely applaud her comments. I am extremely proud and thankful that someone who has influence has been brave enough to bring this to the forefront of the media’s attention again.  But her comments have also being endlessly criticised, with many saying Streep could have used her to speech to urge Trump to promote equality and unity going forward. Many people were extremely critical of this pitiful man during the election campaign, but now, suddenly we’re meant to get behind him and hope against hope, that everything will be OK?

I strongly disagree. It is wrong and cowardly for anyone to sweep this behaviour under the carpet, just because in 7 days time this rude and ignorant man will be the (so-called) most powerful man in the world.  Why does that give him the right to abuse woman, mock disabled people and generally disrespect anyone who doesn’t agree with him?

In Trump’s defence, people have claimed he’s mocked others in exactly the same way and Trump himself has said he wasn’t mocking him but I think I may just send Mr. Trump a dictionary as an inauguration gift. Claiming to “not know” about Kovaleski’s condition is no excuse (not that I believe him) – when you’re in the position Trump was and is now in, you make it your business to know.

As a disabled person with Cerebral Palsy and a woman, Trump has shocked and offended me numerous times; the fact he is about to become US President is unbelievable. But this is what’s worse: disabled people have fought for years and are still fighting for equality and to be accepted into society. Yet Trump, the soon-to-be most influential man in the world, and his fans think it’s acceptable to mock disability and then defend his actions. And then they attack someone who is prepared to make a stand for disabled people.

I fear for America and equality over the next for years.  Well done Meryl for making a stand,

New writing projects – feedback very welcome!

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

This time last year, my new year’s resolution was to get my memoir, “Does it wet the bed?”, published. It was an ambitious goal as the manuscript was barely finished. But with lots of hard work and determination,  I fulfilled my resolution . . . for once!

This year, I have two writing projects which I want to pursue, though I am not going to promise that either will be finished, as I have other work projects in mind.

Firstly, I plan to write a “Disability Etiquette Guide”, to help people gain a better understanding of the issues surrounding disability. I know from experience, lots of people find disability awkward; they don’t know how to approach disabled people and worry about doing or saying the “wrong” thing.  The aim of the guide will be to put people’s minds are rest and to honesty answer the questions that they have.  The guide will cover communicating with disabled people, how and when to offer assistance, the correct language as well as the language to avoid and best practice in a number of situations.

This is my basic plan for the book but I’d really like suggestions from you as to what you would like to see included.  If you have a few minutes and would like to help me, please consider the following questions and contact me with your thoughts:

  • What would you most like to know about disability?
  • What concerns you about interacting with disabled people?
  • What do you think are the common misconceptions about disabled people?

 

I’d really love to hear your thoughts and will do my best to cover all the points I receive.

Secondly, I plan to start a Children’s Book to help teachers and parents to explain disability.  I recently spoke to a mum who was unsure about how to answer her son’s questions about me – she wanted to give him the answers he needed but was worried about offending me. I hope I was able to offer her some reassurance as I explained the best things to say and it cemented my desire to write a book which will help parents to answer those tricky questions with confidence. I haven’t quite decided on the format or style, but if you’re a parent and have any thoughts, please get in touch.

With other training projects and my new role as Trustee of CP Sport, 2016 is set to be a very busy year