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Category: Disability and kids

Plans? Who needs ’em?!

Posted in Costs To Expect, Disability and kids, Disabled Parent, Does it wet the bed?, Family, Flyinglady Training, Motherhood, and My writing

They say life is what happens when you’re busy making plans and I couldn’t agree more!

Before I fell pregnant with my first boy, Jack, I started Flyinglady Training with the intention of focusing on delivering disability and equality training. I was already writing my autobiography – Does it wet the bed? – which I eventually self published in 2015. Jack kept me busy enough without having to build up too much of a client list – though I found more people were keen to book me for speeches than training and either way, I get to talk the hind legs off a donkey!

Whilst pregnant with my second little lad, Niall, I drafted my first children’s book about disability which remains a word file on my laptop for now. Being mummy to my two boys has obviously taken priority and having another baby who doesn’t sleep well, has played havoc with my carefully made plans of releasing more books!

I have decided though to park Flyinglady Training for the moment at least and to focus the energy I do have left over on this author site, blogging whenever I can and doing my talks whenever I get bookings. So if you’d like me to do a speech, please get in touch! I’m really keen to visit more schools and helping them to broach the subject of disability, as well as telling others my story to help them along their own journey.

I won’t make promises about further books (as life has a habit of getting in the way!) but rest assured, I’ll be blogging, writing and helping hubby with our Costs To Expect venture whenever I can!

Challenges of a Disabled Mum – Mummy’s “Terrible Palsy”

Posted in Cerebral Palsy, Disability and kids, Disabled Parent, Education, Motherhood, Personal, and Schools

As I promised a few months ago, “Challenges of a Disabled Mum” is back – though it has to be said that my biggest challenge at the moment is simply finding the time to blog and develop the many ideas that I have! My five month old baby boy, Niall, is a full time job and by the time he settles at night, I’m absolutely exhausted!

However, I wanted to tell you a little story about my eldest son, Jack, who is now six. Recently, my hubby suddenly told me, “You do realise that Jack refers to your disability as terrible palsy?!” I roared with laughter as I honestly hadn’t picked up on it – Jack had obviously tried to keep it a secret from me! The next day, I decided to ask Jack what disability he thought I had. With a cheeky grin, he revealed his nick name for what is Cerebral Palsy. I didn’t want to chastise him at all as I knew he was being playful and didn’t mean any harm and in all honesty, I thought it a very clever play on words for a six year old.

However, I want him to grow up understanding and embracing disability and the Social Model. As I have done in the past, I took the opportunity to explain to him that although my disability makes some things difficult, it also makes me who I am as a person. As a child, I think at the moment he tends to pick up on the things that I can’t do more so than appreciating the many things that I can do but I think this is why I’m so passionate about the talks I do in schools. Disability needs to be talked about more, both at home and in school, so that children don’t always see disability as negative. I’ve always been open and honest with Jack and will be with Niall, to ensure that their questions are answered in ways that are age appropriate and pave the way for them to advocate the Social Model.

If you’re a parent or a teacher and would like more information about my Disability Talks in schools, please get in touch.

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!

Guest Blog: Thomas Talbot – My Racerunning Story

Posted in Accessibility, Cerebral Palsy, Cerebral Palsy Sport, Disability Aids, Disability and kids, Disabled Access, Family, Racerunning, and Uncategorised

Thomas Talbot is 13 years old and has Cerebral Palsy – it hasn’t stopped him from becoming a successful international Racerunner. Here’s his story. . .

My story

Picking up my new RaceRunner

Hi – my name is Thomas. I’m 13 years old and I live near Lincoln. I am an International RaceRunner and I have cerebral palsy. I have to use a walker to get around and I sometime use a wheelchair if I get tired.

RaceRunning is an athletics discipline with a three wheeled trike and no pedals. Athletes can run on the track or use it for therapy.

I first discovered RaceRunning when I went to watch a Cerebral Palsy Sport athletics competition in Gateshead in August 2013. There were two RaceRunners competing and I was absolutely captivated by it. It looked such fun and looked like it could be something I could do. The boy that was racing was just like me – using a walker and I just loved the look of it. I badgered my Mum about it for some weeks about it after that!

My 2015 haul of silverware!

I went to a Cerebral Palsy Sport taster day in February 2014 and tried it for the first time. Wow – it was so exciting and I loved the feeling of being able to run without my walker. Then I went to a couple more taster days through 2014 and I told my parents I wanted my own RaceRunnner which we fundraised for and in April 2014 I collected my very own RaceRunner.

I don’t think at that time I knew where it would lead. The physio I had then kept saying that she thought I was getting a little stronger by using it and all I knew was that I loved doing it and it was better than painful physio.

I competed in my first RaceRunning competition in May 2015 in Manchester and then competed the whole season in different places including the CP Nationals. I won four events for Under 13’s and I was also awarded the Colin Rains Trophy for endeavour in my first season. I also won my District Young Achiever of the Year Award in 2015.

European Championships 2016

Sadly I had to have a big hip operation in January 2017 and I was in a hip spica for 6 weeks as they took some bone from my leg and grafted it into my hip. For all those days in the hospital and then recovering at home, all I wanted to do was be back on the RaceRunner (and also watching my beloved Manchester United). During my recovery we worked hard to build up strength as I have quite a leg length difference and this meant hydrotherapy as well as painful physio. But thanks to a good friend I got to see England and Manchester united play football!
I wasn’t able to compete this year until September and I really missed my friends. When I returned back to track racing at the Nationals, I won four golds in the Under 16 age group and nearly beat most of my PBs. I did not expect that!

The RaceRunnner helps me move so easily when I am on the track. I can run with the RaceRunner but can’t do that as easy with my walker. It gives me freedom. I use a chest plate and back strap so my physio also says it helps with my posture and the strength around my middle. I just love to run!

I train two to three times a week in Lincolnshire depending on homework and also what competitions are coming up. If I have training or a competition at the weekend I only train twice in the week.

European Championships 2016

I’m hoping to be selected to go to the CP World Games in Spain in 2018 and represent England. I have made the long list so really crossing fingers for final selection. I was too young when it was in Nottingham in 2015. To be selected – well that would be fab!

I wouldn’t be where I am today without the support of my family and friends. I’ve made so many friends who are just like me and I don’t feel quite so alone. I know when I get to the track or at a competitions I’m going to see them and enjoy having a laugh with them…as well as racing. It has made me much fitter since I started RaceRunning.

I feel much better about myself and more confident. I have made a lot more friends and love spending time with them at the track. I think it has made me believe in myself abit more. I am much more outgoing than I was before I started RaceRunning and I like going to different places to compete. The trip out to Denmark as an England team was awesome and we did have lots of fun!

Building an inclusive, more tolerant future

Posted in Accessibility, Disability and kids, Disability Awareness, Education, Equality & Diversity, Fighting for Change, Media, and Schools

I just posted on my Flyinglady Website about how I love going into schools and doing Disability Awareness sessions for the children; I’m so passionate about it that I offer the sessions for free wherever I possibly can.

The sessions help kids to understand that everyone is different and that’s a good thing; life would be incredibly boring if we were all carbon copies of each other.  I go on to try and help the kids to understand how they help people with disabilities and explain how including everybody is so important.  Inclusiveness, in simple, age appropriate language.

Now, as I sit watching the news of yet another, hate driven, evil terrorist attack, I feel despair the same of everyone else. I fear for my little boy and a friend tweets her advice that “All we can do is be the change and teach our children better. The majority of people are good.”

And we are.  The world is full of good, kind, peace loving people and we need to teach our kids – our future – to be the same. Teach them that it’s OK to ask questions, to be curious and that they must be accepting of differences. We need to teach them from a young age about diversity and that age, sex, disability, ethnicity, sexuality and religion make each of us who we are. We’re all different, all unique but ultimately, we’re all human beings and that’s the bottom line which needs to be respected.

So let’s have Disability Awareness on the curriculum but let’s also give Equality and Diversity generally a higher priority from a young age.  Let’s invite a range of people, from all walks of life, to give presentations to schools and allow our children to explore these issues. Let them ask the questions that perhaps their parents would struggle to answer. Let them learn from personal experiences, not just teachers and books.  Perhaps adopting such an approach will help us create a much more tolerate society for our future.

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!