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Category: My writing

Challenges of a Disabled Mum: Game of Cat & Mouse!

Posted in Accessibility, Cerebral Palsy, Disability and kids, Disabled Parent, Family, Flyinglady Training, Motherhood, My writing, and Personal

Like most parents, I’m breathing a sigh of relief now that the kids are back at school. It’s a challenge for any parent, trying to keep kids entertained whilst not spending an absolute fortune. This was also the first time that I felt confident in taking Jack out and about independently, using public transport – though you might like to read more about that particular issue here. Jack is now of an age where, for the most part, he listens to me and understands the need to stay close to me when we’re out. With the exception of the soft play, that is.

On the last day of the holidays, I decided to treat him to a McDonald’s followed by a session in the soft play centre. We normally go and meet other kids and their mums, so he has someone to play with and I have the moral support of other parents. I wasn’t entirely sure if it would work on his own but as the weather was dodgy, I decided it was a good way to pass a few hours.

I made sure Jack knew where I was and that he needed to listen out for the lady, who would call out our colour when it was time to leave. All was well and I kept an eye on him from where I was sitting. Jack kept coming back to me, mostly to complain that he was hungry! But time ticked on and it was almost time to go so I decided to gather our things and get Jack out.

As it had got slightly quieter, they weren’t enforcing the time limit so Jack had no way of knowing when to come out. So I went to the edge of the play area and starting trying to get his attention. But do you think I could catch his eye or make him hear as I called! Nope! It was like a game of cat and mouse – he’d run the other way just as I’d got in a position to catch his eye! He couldn’t hear me call him above all the noise and after 10 minutes or so, I was ready to give up! Then another mum kindly offered to go in and tell him to come to me.

Another cat and mouse game commenced as she entered the soft play and tried to find him for me. She was anxious about approaching the wrong child, as I tried to follow her and she pointed kids out! I was now trying to keep track of two people from the ground and directing her towards him! It was all quite funny but eventually the kind lady tracked Jack down and he came out.

It’s not a major issue and it provided some entertainment but it’s just one of the things that make me slightly anxious about venturing out alone – those unexpected challenges!

Happy New Year – That’s life!

Posted in Cerebral Palsy Sport, Family, Motherhood, My writing, and Personal

Happy new year!! It’s that time again when we make promises to ourselves about how we’ll lose weight or give up something and yet we all know, by the end of January it’s all long forgotten! 

Last New Year, I made a very public resolution that I would get my second book published.  As it’s a children’s book and I’d already started it, I felt absolutely sure that I’d set myself a realistic goal. Until around about the 15th January when this little thing called “life” began getting in the way! Firstly, I unexpectantly became Chairman of Cerebral Palsy Sport.  Don’t get me wrong – it’s a role I’m very proud to hold and I love the challenges it throws at me. But it is a time consuming role which I’ve been getting used to.

Secondly, at the beginning of April, my hubby had to take a contract away from home for 3 months, leaving me to look after our little lad during the week. It was a challenging time for us all, particularly as it was unexpected and the energy I poured into keeping things ticking over left me little time for my own work.

Before I knew it, Christmas was within sight and I felt like I’d failed – despite everything that I had achieved in other ways.  “Life” had won and taken me away from where I’d liked to have been but in a funny way, I was glad. I was and still am enjoying my role as Chairman and I’m learning so much.  Hubby working away was probably one of my toughest challenges of 2017, especially as little man still hadn’t grasped the idea of sleeping through the night! But we both look back on it now as a positive experience which pushed me as a parent and really boosted my confidence.

So there are no resolutions this year, no feeling like I’ve failed – I’m just going to go with what life decides and be grateful for whatever I learn along the way!

Though that’s not to say that I won’t try my best to get that book closer to publication!! 

 

Cerebral Palsy: The good, the bad and everything in between

Posted in Accessibility, Cerebral Palsy, Disability Awareness, Disabled Access, Education, Equality & Diversity, Fighting for Change, Flyinglady Training, Making a difference, My writing, Personal, Social Model of Disability, Uncategorised, and World CP Day

This is my life, my feelings, my achievements and frustrations of living with Cerebral Palsy

Campaigning – I’ve spent the last ten years supporting and campaigning for the rights of Disabled People. I ran a campaign to improve the accessibility of my local area – taking it as far as No. 10 Downing Street.  Find information about my “Great Barr Great” Campaign here

Exhausting – Having CP means every day tasks can take me longer and I get tired easily. But I don’t let it stop me!

Rebel – You tell me, “You can’t” and I’ll tell you, “Just watch me!” I thrive on proving people wrong and achieving what might be considered the impossible!

Exciting – I truly believe my life wouldn’t be as fulfilling and as exciting as it is without my Cerebral Palsy. Life has taken me down many exciting paths so far and I’m grateful for that.

Brave – Please don’t call me brave. I’ve always had CP and I’m just living my life the only way I’ve ever known – I’m not brave or special. I’m just Aideen.

Regrets? – Would I have a life without CP if I could? Not a chance. It’s made me who I am and I wouldn’t change that.

Awareness – My training business is focused on raising awareness of disability and making life easier for other disabled people by changing attitudes. And believe me when I say, here in 2017, that there’s still a lot of work to be done in changing how people view disability.

Living – I’m just trying to live my life. I hope World CP Day will make that a little easier by making people more aware of CP and it’s implications.

 

Passionate – I’m guessing you know by now the passion I have for making a difference to the lives of others with disabilities. The Social Model of Disability made huge headway in changing the way society views disability but unfortunately, discrimination is still occurring regularly. This has to change and disabled people have to be put on an equal footing with everyone else in society.

Accessibility – Getting around in a wheelchair is far from simple and I think I’m getting a name for myself in trying to identify and put right the problems! The Equality Act 2010 intended to address such issues and yet I still find accessibility issues a major barrier to me leading a “normal” life – whatever that is!

Lonely – I don’t mean this in the traditional sense, but sometimes it can feel quite lonely fighting for change and it can feel like an uphill struggle. World CP Day is an opportunity for people to pull together and raise awareness in oppose to being a lone voice, as it often feels.

Scary – There are times, when as confident as I am, having Cerebral Palsy can be scary. When I’m meeting someone new and not sure if they will understand my speech; when I’m in a new environment and unsure how others will react to me. Awareness of CP really helps take away that fear.

Yes – My mum always told me there was no such word as can’t so if I can find a way to do things, the answer is always yes!

 

See what I did there?!

 

If you or someone you know has CP, please get in touch and if there’s anything I can help you with just let me know.

Corporate training and support also available – please contact Flyinglady.

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

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?!

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.