Skip to content

Category: Motherhood

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!! 

 

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!

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!

Facing a diagnosis of Cerebral Palsy: Hope for Parents

Posted in Cerebral Palsy, Disability Aids, Disability and kids, Disability Awareness, Disabled Access, Disabled Parent, Equality & Diversity, Family, and Motherhood

 

I must admit to being a bit of a soap addict.  I was thrilled to see “Emmerdale” doing their bit for Cerebral Palsy Awareness Month, following the difficult birth of Megan and Jai’s baby girl.

The doctors have advised the new parents that due to complications during the birth, which meant the baby suffered a lack of oxygen, she may now have Cerebral Palsy. Though I remember that “it’s just a story,” I have much sympathy with the characters who have no clue about what Cerebral Palsy is or what the future might hold.

It’s scary.  Hard to believe. You don’t know where to turn and at this stage, the doctors can’t make any promises or offer any kind of reassurances. The future now seems like an up hill battle, with the summit seeming unattainable.  That’s how many parents feel when being told their child has Cerebral Palsy – a condition for which there is no cure.  I have no doubt that is how my own parents felt, thirty something years ago, when they were told the same thing about me.

There was no internet back then, nowhere to seek reassurance and all they could do was take one day at a time.  They could only hope and pray that the dim view that the doctors painted of my future was wrong. And indeed it was.

Despite my physical limitations, Cerebral Palsy didn’t rob me of either my intelligence or my desire to lead what some might call, a “normal life”.  Despite many sceptics, I enjoyed a mainstream education which ended in me graduating with a 2:1 Honours Degree from Oxford Brookes University.  I went on to secure full-time paid employment and became a successful manager in a small Disability Charity.

But I also had other dreams and ambitions that when I was born, 33 years ago (almost!), would have been deemed impossible, unthinkable even by those who knew of my fiery and determined personality.   I daren’t even voice my dreams but I knew that I wanted two more special roles:  A wife and a Mother.

Who would have thought, all those years ago, that those dreams would also be realised? On 3rd September 2011, I took some shaky steps down the aisle and became wife to Dean, with the most amazing wedding. Then on 28th June 2013, I became Mummy to the most beautiful little boy, Jack James.

If my parents could have looked into the future and known the life that lay ahead of me, that diagnosis of Cerebral Palsy wouldn’t have seemed half as bad. Yes, there were challenges and it wasn’t always easy but my parents and I maintained two things: hope and determination.

So what would I say to parents facing the same diagnosis?  Firstly, don’t jump to conclusions.  Cerebral Palsy affects everyone differently and it’s important not to make assumptions before you know the facts.  Secondly, a disability isn’t the end of the world and if you don’t believe me, read “Why I love having Cerebral Palsy.” Finally, just don’t give up.  It can seem hopeless, like your life or your child’s will never be the same.  But with hope, determination and a good sense of humour, the future can and will be brighter than you imagine it to be!

A knock for working parents

Posted in Accessibility, Disability and kids, Disabled Access, Disabled Parent, Family, Making a difference, Motherhood, and Personal

For almost two years now, our little boy has attended the local nursery and I’ve always said, it’s the best decision we’ve made.  Jack absolutely loves it and has developed so much under their care and I’ve never worried about him being there.  The nursery offered concessions that other local nurseries didn’t and most importantly, it’s fully accessible, unlike most of the other local nurseries.

So you can imagine our distress and disappointment recently when we received a letter, stating that not only were prices increasing but that almost all of our concessions were now being removed.  These include:

  • Changing the opening time from 7.30 to 8am and expecting parents to pay more for this reduced service. Opening at 8am puts working parents under immense pressure to get to work on time, particularly those who don’t work locally.
  • Expecting us to pay for a service when we can’t access it.  Every year, the nursery closes for two weeks at Christmas and up until now, we didn’t have to pay for this.  Now we are required to pay for the Christmas break, all bank holidays and times when we take our children on holiday – we used to get 2 weeks half price for holidays.  This totals four weeks of extra fees for a reduced service.
  • Fees are now payable upfront from September, meaning that in August (peak holiday time) parents are expected to pay double their fees.

These decisions have a massive impact on us and our families and yet they have all been taken without any consultation and without any thought or consideration for how parents will manage these changes, either practically or financially.  This is both arrogant and offhand.

As a wheelchair user, this nursery is the only nursery that I am able to get to which is fully accessible.  To make all of these changes without consultation is very upsetting, given my very limited options for childcare.

There is a meeting next week for parents to voice their concerns but we have been told already that non of these decisions will be reversed. I think this is extremely arrogant and disrespectful to parents – the people who are paying to keep their “business” afloat.  The Government offer various incentives for parents to work and then we have these changes enforced upon us – it doesn’t make any sense.

Casting Call for Extraordinary mums-to-be

Posted in Cerebral Palsy, Disability and kids, Disability Awareness, Disabled Access, Disabled Parent, Family, Fighting for Change, Media, and Motherhood

On behalf of Curve Media

Few mums-to-be would say that pregnancy is easy or stress-free, but for some women, having a baby presents exceptional challenges.

 

Curve Media have been commissioned to make a second series of 6 x 60 minute episodes for Discovery, on the subject of pregnancy called “My Extraordinary Pregnancy”.

 

This factual series will take a look at unusual pregnancies around the world- meeting mums-to-be who are juggling the excitement and anxiety that pregnancy is expected to bring, but who might have an extra ‘something’ to take into account.

 

We’re looking for women who are experiencing their pregnancy with a pre-existing condition or disability of their own (such as dwarfism or visual impairment) or have a condition brought on by the pregnancy (like extreme cravings, or severe morning sickness).

 

We’re also looking for mums-to-be who, might have previously been told they were unlikely to conceive due to unusual gynaecology.

 

Across this observational documentary series, we’ll follow these women through their unusual pregnancies, as they and their families prepare for the birth of their baby. We’re hoping to film with the pregnant mum’s medical practitioners to help the audience understand how the expectant mother’s condition affects her experience of pregnancy medically, while the mum-to-be and their loved ones will take us through the day to day realities of their unusual pregnancy.

 

If you think you may have members, or know of families or individuals, who would be interested in the possibility of our helping them share their pregnancy story, please do call or email the My Extraordinary Pregnancy producers on 0203 179 0099 / extraordinarypregnancies@curvemedia.com – we’d love to hear from you.

 

Please note: We will use and store the personal details contained in your email and any further response, in accordance with the Data Protection Act 1998, for the sole purpose of producing the programme.