Skip to content

Category: Disabled Parent

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!

Challenges of a Disabled Mum: The School Run

Posted in Accessibility, Cerebral Palsy, Disability Awareness, Disabled Access, Disabled Parent, Education, and Family

How the time flies! It doesn’t seem five minutes since I was breastfeeding and watching my little boy learning to walk. Now, he’s just started school and I’m just like any other mum doing the school run every day.

Well, not quite. The school run can be stressful enough but add a wheelchair to the mix and stress levels go through the roof! Luckily, Jack went to nursery school last year so he loves school and has settled into Reception brilliantly. But the rush of excited children and their parents has made the morning drop off quite difficult. Particularly as the route to Jack’s classroom is through the nursery area and the door had been propped open with a box of toys, limiting the width of the door!

However, I knew the school were very supportive of me so a quick email sorted out the door issue. Now to just try and drop little man off without running over any little toes! I try to get to school early so that we’re first in and at least I can say goodbye to Jack and then very slowly make my way out, facing the stampede of children!

I try to leave Jack at the classroom door as if I do go in, I find it difficult to manoeuvre around and watch for little people, who don’t yet have an awareness of me!! Then I try to find a quite space to let everyone else pass, before leaving the building. By the time I get home, my nerves are shot and I’m just relieved to have done another successful drop off without incident!

There’s no answer to this, children are children and it’s on me just to be very careful. But I do wish I had eyes in the back of my head!

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!

 

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!

Challenges of a Disabled Mum: A to B

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

I knew when I fell pregnant with my son that motherhood would present more challenges to me than most and the thoughts about how I would cope gave me a few sleepless nights. I knew that I wouldn’t be the same as other mums, that I’d have to think creatively to overcome my disability in motherhood.

My hubby was amazingly supportive and even when I doubted myself, he refused to believe that there was anything I wouldn’t be able to do. His stance gave me so much confidence and from then on, we’ve focused on the solutions and ignored the problems.

Most parents have a pushchair at the top of their shopping list but that wasn’t even on our list. Two sets of wheels don’t work.  So to ensure I could get out and about with Jack, albeit never too far from home, we brought a baby harness which strapped to me and worked really well even though I was sat down.  It wasn’t perfect as I still needed help with all the clips but it at least allowed me to visit family and friends and take Jack for short walks. Jack loved riding on my lap and I called him my little joey!

 

Jack soon grew out of the harness and I had to look for other ways of getting us out and about safely. For a while, I strapped Jack on to my lap using the wheelchair seatbelt, which was long enough to go around us both.  Hubby also brought us some reins but we found that they were too short – if Jack stopped suddenly or fell over as he sometimes does, he’d be in danger of being caught by my wheels.  We had to give him more slack, so reluctantly, we replaced the strap on the reins with a much longer dog lead!  It meant that Jack could go further ahead of me and I’d have more time to stop if needed. I told you we had to think creatively!

More recently, as Jack is now at school nursery and approaching his fourth birthday, I started to feel that Jack had outgrown the reins.  Most mums, by now, would just be able to hold their child’s hand but there’s still a risk that Jack will run into the road and being in a wheelchair, it’s not that easy for me to react as quickly as other parents.

So we’ve now invested in a wrist strap, which finally allows me to “walk” holding Jack’s hand but gives me the security of knowing that he can’t run off! I can’t tell you the joy I’ve experienced, holding his hand in mine, just like any other parent and I think it’s probably something that we all take for granted.

Being a disabled mum isn’t easy – it took me about 20 minutes last night just to put a clean duvet cover on Jack’s bed! – but I wouldn’t change it for anything!

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!

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,

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?!