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Category archive for: Disabled Parent

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!