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Category: 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.

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

Bringing Disability into the media spotlight

Posted in Cerebral Palsy, Disability Awareness, Does it wet the bed?, Equality & Diversity, Fighting for Change, Making a difference, Media, My writing, and Personal

 

Having a speech impairment, I’ve always hated the sound of my own voice. Not only that, but I have at times, struggled to make other people understand me.

So when I started promoting my first book, “Does it wet the bed?”, my publicists, Literally PR, asked what types of activities I’d be comfortable doing.  “Anything,” I replied, “except radio.” I feared other people disliking my voice as much as I did and turning off their radios in frustration at not understanding a word I said.

But then I paused just to think about it. Disability is still misunderstood and disabled people are still overlooked. And why? Because disability is shied away from in every aspect of life, but especially by the media.  Yes, we occasionally see disabled people on TV but I can’t never help feeling that this is a “token gesture” – disabled people are seen which is great but we are very rarely heard.  Disabled characters in my favourite soaps are a massive step forward but their lives and the issues they face on a daily basis are rarely highlighted or explored.

By shying away from radio, I realised, I was feeding the problem. So what if my speech is slow and people need to listen a little more carefully?  So what if a few impatient listeners tune out? Society needs to be more exposed to disability in order to be more understanding and accepting of it.

Since then, I’ve done two radio interviews and received brilliant feedback from both.  I’ve actually enjoyed them!  My confidence is definitely growing and I’m proud to be helping to bring disability into the media spotlight.

Interview anyone?!

Legislation doesn’t improve knowledge of disability

Posted in Disability Awareness, Does it wet the bed?, Equality & Diversity, Fighting for Change, Making a difference, and Media

Since “Does it wet the bed?” was released, I’ve done several interviews for newspapers, magazines and radio shows. Each has focused on different aspects of the book and my life but nearly all of them have included the following (or similar) question: “Have attitudes towards disability changed since you were a child?”

My answer has always been yes; things have definitely improved in the past 30 years but we still have a long way to go. Although we now have legislation to protect the rights of disabled people, this isn’t as useful as it could be because people simply don’t understand disability. They still make wild assumptions without actually knowing any fact.

I’ve never been more certain of that than when scrolling through my twitter feed this morning. I follow Cherylee Houston, the actress who plays Izzy in Coronation Street. I was outraged to read her recent tweets, describing how a complete stranger knocked on her front door and informed her partner that she was a “benefits cheat” and he was going to the papers.  Why, you might ask? Because he had spotted Cherylee, who uses an electric wheelchair, dare to take a few steps.  She therefore, must be according to him, a cheat and a liar who is only pretending to have a disability. And oh, she has a disability so she must be claiming benefits.  Ever heard the phrase, to make an assumption is to make an ass of you and me?!  He’s the only ass in this case.

Hats off to Cherylee for taking it all in her stride but this is just one incident which highlights just how much work we still need to do in this country to raise awareness of disability and stub out the ignorance which is blighting the lives of disabled people. Who gives anyone the right to knock on someone’s door and abuse them in this way?  I’m glad Cherylee wasn’t home at the time and wasn’t directly subjected to this utter trash but no doubt it was equally as upsetting and disturbing for her partner.  I hope this low-life does go to the papers as it may help to highlight the pure ignorance and stupidity which is holding disabled people back.

We can have all the legislation we like, but there is so much misunderstanding about disability and until people are educated, disabled people will continue to be the subjects of hate crime.

Giving people with Cerebral Palsy a voice

Posted in Accessibility, Cerebral Palsy, Disabled Access, Does it wet the bed?, Equality & Diversity, Fighting for Change, Making a difference, Media, My writing, and Personal

This week is Cerebral Palsy Awareness Week and today, 7th October, is World CP Day.  As someone with Cerebral Palsy, I’m delighted to be part of such an occasion that will highlight Cerebral Palsy, raise awareness of the condition and celebrate the achievements of those who have CP.

I’ve always found that disability and Cerebral Palsy are viewed in a negative light and both are hugely misunderstood. My recent book, “Does it wet the bed?” highlights the misconceptions that I’ve fought against, the pity which I’ve tried hard to ignore and the discrimination which I’ve refused to let destroy my confidence.  It was really important to me that people knew that having Cerebral Palsy hasn’t held me back or ruined my life.  Far from!  I’ve enjoyed a mainstream education and got a 2:1 Honours degree; held down a full time job before venturing into self-employment and most importantly to me, I’ve become a wife and mother.

As a society, I don’t think disability is discussed enough and World CP Day is a fantastic opportunity for people to learn more about the condition and hopefully, challenge their own perceptions about people with Cerebral Palsy.  I’ll be hosting a live Q&A session on Twitter between 1-2pm GMT (@Aideen23Henry)  so that people can ask questions about Cerebral Palsy, what it’s like to live with the condition and the experiences I’ve had as a result of having Cerebral Palsy. I really hope people will take this opportunity to learn more about it and that this whole week gives people with CP a voice.

But it must go beyond that.  When this week is over, we shouldn’t just forget about it.  We need to get our politicians to understand the issues which people with CP (and other disabilities) face and get them doing more to remove the barriers which still exist within society.  We need to raise awareness with employers and ask them to provide more opportunities to those with Cerebral Palsy. And we need to constantly challenge the perceptions of the general public so that eventually, there are no barriers to people with Cerebral Palsy living fulfilling and rewarding lives.

Why I love having Cerebral Palsy

Posted in Accessibility, Cerebral Palsy, Disability Aids, Disability Awareness, Disabled Access, Does it wet the bed?, Equality & Diversity, Fighting for Change, Media, and Personal

This week is Cerebral Palsy Awareness Week, with tomorrow being World CP Day.  I’ll be live on Twitter between 1-2pm GMT to answer your questions about cerebral palsy, my life living with the condition and about my memoir, “Does it wet the bed?”.  But in the meantime, here’s why I love having Cerebral Palsy. . .

I get to drive without a licence

I’ve failed my actual driving test SEVEN times! But I don’t really mind as I still get to speed around in my Spectra XTR2 wheelchair and go anywhere that I want to go.  Who needs a car?!

I get free botox injections

But not for cosmetic reasons!  Botox can be used to help tight and stiff muscles which is a symptom of cerebral palsy.  I had it to relieve tightness in my arm and it was really effective, giving me back the full use of my arm.

Watching people’s reactions as I get out of my wheelchair and start walking

One of the major misconceptions I come across is that people who use wheelchairs can’t walk.  I love watching the surprise and sometimes apprehension on people’s faces when I suddenly get out of my wheelchair!  After a few seconds of watching their reaction, I reassure them that I’m absolutely fine!

Not having to queue at theme parks

Probably my favourite reason!  I’m a real dare devil, the bigger the ride, the happier I am and not having to queue is certainly a good perk to having a disability!

Being able to disguise when I’m tipsy

My cerebral palsy causes me to tremble quite a bit but when I have a few drinks, it calms my spasms and makes my speech much clearer!  Nobody can tell when I’m a bit worse for wear!