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Category: Personal

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!! 

 

Open Letter to Uber: Your failure of a Disabled Customer

Posted in Accessibility, Cerebral Palsy, Disability Awareness, Disabled Access, Equality & Diversity, Fighting for Change, Making a difference, Media, Personal, and Public Transport

Last weekend was rare for me. I was really looking forward to a short break in London, visiting one of my oldest friends and my sister. I have Cerebral Palsy and a four year old son, so taking a break is a real treat.

We’d arranged a night out and as a wheelchair user, this takes some planning but my best mate had it all in hand. As there was a large group of us, we booked two of your taxis in advance. One to take the majority of our group and the other, an accessible vehicle to accommodate me and my friend; we even got a text to confirm our booking.

As I believe is your standard practice, five minutes before our requested slot, we got another text indicating that you were on your way. So we piled outside just to be ready and the other taxi for our friends arrived. However, our advanced booked accessible vehicle was nowhere to be seen. We waited and waited. No more texts pinged and still we waited. Half an hour later, it was evident that we had been forgotten. There was no way of contacting you to let you know that a vulnerable, disabled customer had just been left high and dry. For had I been alone (as I mostly am in my travels around the country), that’s exactly what I’d have been. Alone and vulnerable, with no way of letting you know of your unforgiveable mistake. Luckily for you, I had my friend to ensure that I wasn’t just left on a dark street, in an unfamiliar city with no way of getting to my destination.

In case you’re interested, we did eventually get to where our party had been waiting over an hour. However, because we couldn’t get an accessible cab, I had to go without my electric wheelchair, which made it difficult and took the shine off what should have been a great night out with my friends.

But I’m afraid my complaint doesn’t stop there. Your initial response when my friend made contact was, as he described it, lacklustre:

So sorry to hear that you did not meet your friends on time.

Although you have requested uberAccess in advance, unfortunately, there’s no available driver-partner to accept your requests that is why it was unfulfilled.

Feedback like yours helps us optimise the pickup experience. We appreciate your patience and understanding.”

 

So if there wasn’t a vehicle available, why did we receive a text five minutes beforehand?

And secondly, you don’t have our patience or understanding. You left us waiting, with no way of contacting you or of getting to our destination. And you ruined our night.

Your response shows a total disregard and ignorance for what you actually did which was to ignore the request of a vulnerable, disabled wheelchair user. Had I been alone, I wouldn’t have known where to go or what to do.

In further correspondence, you go on to suggest we may have misunderstood how the Uber App works and the messages it generates. This is your issue, not ours and the fact remains you have let down a disabled customer at a time when your very presence in London is under threat.

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.

Open Letter to All Bus Drivers – from a Wheelchair User Passenger

Posted in Accessibility, Cerebral Palsy, Customer Service, Disability Awareness, Disabled Access, Education, Equality & Diversity, Personal, and Public Transport

You see me waiting at the bus stop and I try to search your face for a clue as to which camp you fit into.  You see, you fit into two camps and sometimes I can’t tell until you pull up and open the doors. All the time, I’m filled with dread and anxiousness, wondering if this time I’ll have a fight on my hands. Whether I’ll be welcomed or made to feel like a complete and utter nuisance.  Quite often it’s the latter.

Some of you are friendly, welcoming and seem to understand that I have as much right as anyone else to use public transport.  You go out of your way to gently lower the ramp for me, to ask where I’m getting off and to make sure that the wheelchair space is clear.  If it’s occupied by a pushchair, you politely ask them to move or fold it up.  You kindly help me to position my chair into the sometimes stupidly difficult spaces which aren’t really suitable for wheelchairs at all.  When I get off, you share a friendly word and wish me well.  I feel like a valued passenger.

Unfortunately, I don’t feel as welcomed by some of your uneducated colleagues who openly grimace when they see me waiting for their bus.  One of two things can happen at this point.  They either refuse to let me on, saying their bus is too full or that the wheelchair space is full.  They seemed to have completely missed the memo that the wheelchair space is for the use of wheelchair users and that this is law.  They refuse to ask other passengers to move, for fear that heaven forbid, their bus might end up late or their shift might overrun.

Or they make it crystal clear that I’m a nuisance for needing their assistance.  They huff and puff as they climb out of their cab, then slam the ramp down in front of me. They don’t care if other passengers are blocking the wheelchair space, which I’m supposed to reverse into.  That’s my problem, I’m supposed to ensure I’m safe and ask fellow passengers to move, even at peak times.  I’m made to feel like an inconvenience, a problem and I’ll tell you now – it makes me feel like utter crap.  That’s probably the first time I’m sworn on my blog but it’s the only way to convey how it makes me feel.

How I feel when that treatment makes me late for work or late to collect my son from school.  Yes, that’s right, I’m just like you. I have commitments and I’m trying to get somewhere just like everyone else.  I’d like to get home after a day’s work, just like you.  I’d like to get home without dealing with your attitude because it STINKS.

So thank-you so much if you fall into the first camp; you make my life as a disabled wheelchair user so much easier.

May I suggest, that if you sadly fall into the second, that you consider a career change.  You’ve clearly misunderstood that your job isn’t about just driving a bus. It’s about transporting passengers – whether we’re disabled or not.

My “PIP” journey: Please don’t treat me as a number

Posted in Accessibility, Cerebral Palsy, Disability Awareness, Disabled Access, and Personal

Tomorrow is my PIP assessment and for those who are not familiar, PIP stands for “Personal Independence Payment” and is replacing Disability Living Allowance (DLA).

I’m nervous for two reasons: a) I’ve heard and read about many people who have had a bad experience of the PIP assessment process and b) my experience thus far hasn’t been great. When I phoned to start my application, the delightful lady I spoke to was more like a robot than a human being. She refused to listen to me or answer my questions until she had completed her “script” and the whole conversation felt very impersonal and forced. It didn’t fill me with confidence for the rest of the process, put it that way.

Regardless of the assessment outcome, I just hope I’m listened to tomorrow and not just treated as a “number”. I hope the assessor understands the complexity of disability and isn’t just fixated on the medical side.  I hope they take the time to listen to my speech and not rely on my husband as an interpreter. I hope they appreciate that my disability is different from day to day and that 15 minutes cannot paint an accurate picture of living with Cerebral Palsy every day.

Most of all I hope I’m treated as a human being!! More to follow!

Challenges of a Disabled Mum: Capturing Memories

Posted in Accessibility, Cerebral Palsy, Disability and kids, Disability Awareness, Disabled Parent, Family, Motherhood, and Personal

It’s something most parents don’t even think about. Quickly grabbing the camera to capture your child’s first of something is what every parent has done at some point. Indeed, my hubby has thousands of pictures capturing everything from Jack’s first taste of sweet potatoes to his first attempt at writing his own name.  Each are being kept safely for the day he brings home his first girlfriend!

But for me on my own, it’s not so easy to capture these precious moments, though I do my best. By the time I get my phone or camera out and then steady myself enough to take a decent photo, the moment is often lost. On Jack’s first day of school nursery, Jack very nearly threw an understandable tantrum as I begged him to keep still, click after click, until I managed to keep steady enough.

 

 

I was therefore very touched at a recent Mother’s Day assembly when another parent kindly offered to take some videos and photos of Jack and send them to me.  Each child had to stand up and say a line about why they loved their mummy and it was a moment I wanted to focus on (pardon the pun!) rather than be worrying about recording it.  I was able to laugh as Jack told the whole assembly that I “put on her lipstick and then she dances!”   Two things I definitely never do but a moment to treasure forever, none the less!

Thanks so much to the parent who was so thoughtful and enabled me to just enjoy a wonderful Mother’s Day assembly!

 

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!

Challenges of a Disabled Mum: A to B and beyond

Posted in Accessibility, Cerebral Palsy, Customer Service, Disability and kids, Disability Awareness, Disabled Parent, Motherhood, Personal, and Public Transport

Last week’s blog talked about the challenges I’ve faced getting my little boy from A to B as a disabled mum.  With some creative thinking, we’ve managed to get out and about locally, visiting friends and family.  However, going any further has presented bigger challenges which aren’t so easily resolved.

Since the age of 13, I’ve been regularly going over to Ireland by myself to visit family and friends. I’ll never forget that first time, when Mum entrusted me into the care of the airport staff, with my uncle waiting to meet me in the Arrivals Hall of Dublin Airport. I felt so grown up, travelling all by myself! It’s something I began taking for granted, as airports are obliged to provide support for disabled travellers.

That was until Jack arrived.  As he grew bigger and Dean returned to contracting, I thought I’d be able to pop home for long weekends and half-term breaks, once Jack started at school. Unfortunately, this wasn’t to be as I discovered that the airlines didn’t allow disabled travellers to travel with minors.  Well, technically I could book the tickets and not declare that I need support until arrival at the airport but even for me, pushing boundaries as I do, I’d fear I’d be on very dodgy ground!

So the first time this came up, we decided Dean would fly over with us and then return home for work.  Two weeks later, darling hubby drove back over to Ireland to bring Jack and I home. On other occasions, we’ve managed to work things so that Jack and I travel over with Dean and then return with my parents or sister.  As you can imagine, this takes planning and I find myself having to fit into other people’s plans, rather than making my own.  It has obviously been more expensive and on occasions, I’ve had to miss family events because Dean is working and there’s nobody to travel with.

Whilst in some respects, I accept these limitations as a disabled mum, it is frustrating that it has kerbed my independence! I know that, God forbid, in the case of emergency, Jack and I would need assistance but on the other hand, I don’t think the airlines, like much of society, have considered that yes, disabled people do have children!!  What if I was a single parent wanting to take my child away on holiday? Would I have to wait until Jack was 11 to do what the majority of parents take for granted? 

Whilst it’s not a huge problem, it’s something I didn’t think of when I was considering all the challenges I would face as a disabled parent and once again, we’ve had to think in a different way to other parents. 

I wonder whether airlines and businesses as a whole, could consider ways that they can support people like me, thus raising awareness that disabled people are parents too?  Maybe offering a £20 chaperone service which would be cheaper and easier than the arrangements we currently have to make, would be a start!