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A life unplanned......

Wed, 21 Oct 2015 18:29:14 +0100

Ha! Going so much better than planned!

Camouflage.....

Wed, 21 Oct 2015 17:51:06 +0100

The lengths that some will go to to sneak on to a disabled parking bay.....

How the body's reflexes still try to 'kick in'.....

Wed, 21 Oct 2015 15:17:32 +0100

Haha........when I'm being a little impatient in a queue or watching the numbers indicating the progress (or not!) of a lift's ascent/decent I often ‘flick a wheelie’ and hover around balancing on my back wheels for a while......

Stuck in traffic waiting to get out of a car park yesterday, feeling the frustration and impatience brewing....went to flick a wheelie.....that subtle movement of the body does not have the same effect when sitting in a car.......all four wheels remained in full contact with the road!!!!

This may sound like a ‘tale’ but I laughed to myself as I couldn't believe that I actually tried it!! A bit like going to kick a ball that's heading in your direction and absolutely NOTHING happens....amazing how the brain/body still remembers and that reflexes (try) and kick in.....

Pregnancy and early days of parenthood.....

Mon, 19 Oct 2015 16:36:27 +0100

I was recently asked to contribute to a magazine article by answering some questions about my pregnancy and the early days of parenthood….thought I’d share the answers to the questions on this blog…..

How old were you when you sustained your SCI and how did it happen?

I was 23 years old when I sustained my SCI in 1996. I was on holiday in Tenerife and there was a severe wind storm. A tree was blown down and struck me from behind. I heard the ‘crack’ of the tree and was pushed to the floor. My spinal cord was severed in three places and I was paralysed from the waist down instantly.

Did you have any concerns regarding your disability and motherhood when planning your pregnancy?

I think that when we were planning to get pregnant, I didn’t give a great deal of thought to how my disability would impact on my pregnancy and motherhood as I was just so excited at the prospect of the possibility of becoming a mum!. However, once we found out that we were pregnant, the concerns came in to my mind thick and fast! What on earth was I thinking? Surely I would not be able to be a good mum due to my disability. As my pregnancy develops, I’m going to get bigger and less independent; less mobile and more reliant on other people. I’m not going to be able to push myself in my chair while holding a baby; I’ll have to just sit still all of the time…..or push with one hand and go round in circles! Going out…I’ll never be able to go out with my baby independently as I won’t be able to lift them in and out of the car…..we will be confined to the house or reliant on others to enable us to go out. Surely when my child learns to walk they will just take every opportunity to run away from me…..another reason why we will not be able to go out as it won’t be safe…..WHAT ON EARTH WAS I THINKING??.....

How was your pregnancy and delivery of Sarah – were there any issues?

Oh my word….it could not have been any more perfect really……I had a very healthy pregnancy with no health or disability-related issues…I did not wake up one day with a massive bump that restricted my mobility! Instead, my bump grew gradually (of course!) and I adapted along the way. I remained fully independent throughout and was still transferring in and out of the bath and in and out of the car up until the day Sarah was born.

Unfortunately, my pregnancy was marred slightly by my anxieties of how I was going to manage once our baby was born. I had little peer support but was lucky enough to know a lady with SCI who had had twins a couple of years previously. I spent a day with her and her family and we discussed how they had coped at various stages. However, I still could not imagine how I would be able to manage with a new-born or a more mobile baby.

I was advised that there was no reason why a natural delivery was not a possibility and that the chances of needing to have a c-section were similar to that of an able-bodied lady.

I have to say that giving birth to Sarah was the most amazing experience I have ever had….I went 8 days past the estimated delivery date. I knew that I was in the early stages of labour on Tuesday 8^th January but stayed at home and rested. Late that evening things were clearly progressing but it wasn’t until 5:30 the following morning that I woke James up and told him that I thought it was time to go to the hospital. We were both so calm about it….I got dressed, went downstairs and had a cup of tea, a slice of toast and a chat with my Dad before making our way to the local hospital at around 7:30am. On arrival, I was examined and everything was progressing nicely. The birthing pool was available so I got in it at about 10am. We listened to Classic FM and chatted and giggled in between contractions. James got in to the pool with me at about 1pm and Sarah was born at 2pm – she was perfect…..just opened her eyes and looked up at us! The midwife did not have to intervene at all so we did not hear Sarah’s little cry until about half an hour after she was born.

Did you face any challenges in the early days of motherhood and if so, how did you overcome them?

For the first two weeks, James was at home with us and I guess, like many new mums, the main issues were getting the hang of breastfeeding, coping with sleep deprivation and, most importantly, learning to handle and care for our little girl.

I figured out how to carry Sarah on my lap while pushing myself in my chair and many other things like undressing her, changing her nappy and dressing her while she lay on my lap. Also learning the best techniques to lift her in and out of the moses basket or passing her to someone else without losing my balance! Also mastering the technique of lowering Sarah to the floor and lifting her from the floor to my lap in a way that was safe and comfortable for her as well as for me.

By the time James went back to work, I felt confident enough to take care of Sarah on my own and my fears were not realised.

I worked out how to travel with Sarah in the car independently and believe it or not, since she has learned to walk, she has not run away from me once!!! Crossing a busy road with Sarah walking next to me for the first time was so daunting (the dropped curb was too steep for her to stay on my lap safely)….but I explained exactly what we were going to do, and when, and she stayed right next to me and was not fazed by it at all. After that, I have never looked back….Sarah has been golden and consequently, she has remained safe. I’ve never taken it for granted though and have only recently started to reduce the amount of ‘running commentary’ when crossing roads. It’s hard not to be able to hold your child’s hand and to physically ‘feel’ that they are safe due to the fact that you need both of your hands to push yourself.

With regards to lifting Sarah in and out of the car seats, just as I was starting to struggle with lifting her weight, she was becoming more mobile and started to climb. She was soon climbing in and out of her car seat independently and only needing me to secure the straps…perfect timing!

We did not have much ‘specialist’ equipment at all – James adapted the front of a regular cot and otherwise we used regular baby equipment such as baby carriers, pushchairs and highchairs; we just had to give more consideration as to which I could use more easily……

What advice would you give to other paralysed women who are considering having children?

Firstly, I would say that if you do have a child, it’ll be the best thing you ever do! It is not easy to begin with but then I have not heard a single able-bodied woman say that having a baby and being a new mum is easy! There are just different and additional aspects of pregnancy and motherhood to bear in mind when planning for a family when you have a disability.

Secondly, and more importantly, I would say that whatever your abilities or limitations are, the best things that you can do for your child are to cherish them, respect them and to love them unconditionally. Even if you are unable to physically look after them independently, there is so much more to bringing up a child than the physical side of things; it’s the bond that you have with them that is most important.

Communication is of paramount importance too – both with your partner and your child. Since Sarah was tiny I just talked to her….telling her what we were doing, where we were going, what she was eating……infants may not understand what you’re saying in the early days but I believe that Sarah knew that I was communicating with her in some way.

Sarah is 7 years old now and she continues to amaze me every single day. My emotions for her are inexplicable and I still get caught off-guard and cry tears of joy when I see her perform at school or witness her do or say something when she is not aware that I can see or hear her.

With the right support network, you can have a great family life if that is what you desire!

Spinal Injuries Awareness Day - 16th May - Back Up Trust's campaign; 'Join The Dots'

Tue, 13 May 2014 10:22:57 +0100

The Back Up Trust are running a campaign for Spinal Injuries Awareness Day on 16th May.

The campaign is called Join the Dots and will look at the importance of wheelchair skills and how it enables people to get around their environment at home. A series of videos will be released throughout the day looking at wheelchair skills and how they enable people to use public transport and “join the dots” (on the tube map) around their city.

Please view the link on their webpage http://www.backuptrust.org.uk/jointhedots/ . There is also a competition for people to enter a video of their wheelchair skills in order to win a brand new digital camera.

They're also doing a Thunderclap, so if you could sign up to that at http://thndr.it/1iY9g3c before the day that would give them the boost they need.

The Join the Dots campaign aims to raise awareness on 16^th May but Back Up are also going to keep this going after the awareness day and it will be the future theme of wheelchair skills as they start to teach wheelchair skills in the community and also organise the first ‘jail break’ fundraiser where teams attempt to navigate Europe without spending any money. It’s a very exciting campaign with so much potential!

Please support this fantastic charity and their exciting campaign!

Thank you! Ali

Ability to find and remain in work when you have a disability...

Sun, 26 Jan 2014 22:15:54 +0100

Recent article in The Guardian and some of my thoughts.....

http://www.theguardian.com/society/2014/jan/25/disabled-charities-fit-to-work-tests-benefit

Some people out there must make out they can't work when they can......but for those with conditions/disabilities that are unable to work, even if it's because their condition fluctuates, making their work ability unpredictable, there should be support made available in a timely fashion.

However, it must also be borne in mind that, for those that COULD work, whether we like it or not, if a potential employer knows that a candidate has a condition/disability, it can sometimes (some people would argue that it's often) be the candidate's 'job' to prove somehow that their condition/disability does not make them 'unemployable'.

It can also be difficult for people with disabilities to change jobs or move up the career ladder as some people have the view 'you should just be grateful you've even got a job' ........

Disabilities (physical, cognitive or mental health - related.........and let's face it, people with any disability have to deal with so much that mental health can be compromised as a result) that are 'invisible' to others are more difficult to explain to others (not that it's everybody's right to know) and people often assume that if you're 'walking and talking' you are 'able-bodied' and do not have a disability.

Employing people with 'hidden disabilities' can be very difficult for employers and they often need some form of 'education' to better understand their employee's condition/disability. This is true of 'visible disabilities' too as there can be 'more than meets the eye' with regards to the issues involved.

Some would argue that employing people with 'hidden disabilities' provides no explicit 'glory' to employers and we need to rely on them not requiring such 'glory' and just treating people equally......

I do believe that the extent of 'equality' is improving......I've noticed a difference in the last 18 years.......but there is still a way to go. I also think that applying for a job when you have a disability requires a high level of confidence......such confidence is often hard to gain, is so easy to lose (especially in the event of an unsuccessful job application) and very difficult to rebuild.....often over a long period of time.

Support (practical, physiological and financial) should be afforded to all....

I feel lucky that I have a decent job and have met people that recognise my skills whilst also acknowledging my disability......must go & prepare for an important meeting that I'm presenting at tomorrow......

Ali x

We are all wonder-women!.....

Sun, 26 Jan 2014 20:57:27 +0100

We are all wonderful women!.....
https://fbcdn-photos-e-a.akamaihd.net/hphotos-ak-prn1/1009975_666615096734820_2056593710_n.jpg?dl=1

I'm not 'wheelchair-bound'.....

Fri, 24 Jan 2014 21:21:10 +0100

Being 'wheelchair-bound' is one misconception of living with paralysis.......my wheelchair actually gives me my freedom to be mobile.....everyone else sees my chair more than me, as the majority of the time, I'm looking at anything but my chair - do you spend time looking at the chair you sit on at work, in a restaurant, on the train, in the cinema etc.??????

As for being wheelchair-bound, let me assure you....I do not sleep in my wheelchair, I do not bathe in my wheelchair, I do not drive from my wheelchair (although some people do), James & I do not curl up together on my wheelchair to watch a movie at home.........and there is nothing wheelchair-bound about me when I'm swimming & splashing about with my family at the local leisure centre!

Looking forward to the weekend!........ Xx

Being realistic about my limitations.......

Fri, 10 Feb 2012 11:06:13 +0100

I'd like to think that there is nothing I cannot do for my daughter and for the most part that is true....there is very rarely (to the point where I can't think of an example) a time when I have had to ask someone to take the reins because of me being unable to do something for Sarah.
I have always been aware that the weather can emphasise my limitations - if it's really wet outdoors, controlling the speed of my chair on anything but a flat surface is tricky. To slow down my wheelchair I must grip the push rims and when both they and my hands are wet, this tends to be a bit 'hit and miss'....something akin to the good old 'kangaroo petrol' we all experienced when we were learning to drive!
Anyway, I digress........the long anticipated snow arrived last weekend and it never crossed my mind that there was even a question over whether I would take Sarah to her friend's birthday party or whether I would ask James to step in...he did, of course, offer but I said we would be fine...and we were....but I was keenly aware that if we did get in to trouble (getting stuck in the snow or skidding into another car etc) I would not be able to get out of the car very easily or be able to take care of Sarah's needs at the level I would ideally strive for. I would not be able to scoop her up in my arms and take her to safety.........all of this made me feel that we were vulnerable....more vulnerable than other people.
We did skid and slide about a bit and my heart rate increased beyond my comfort zone a few times...but we got there and back safely and I was relieved when we got back on to the front drive that evening. The snow didn't last long and my episode of feeling vulnerable was short-lived...
However, last night we had 'freezing rain' and a sprinkling of snow. The weather news reported severe road conditions and I was glad that I had not travelled to Preston for work (220 mile round trip) but had worked from home instead. Sarah goes to a pre-school nearby on a Friday morning and I normally escort her up there and collect her at lunchtime. It is within pushing distance so we go 'on foot'. However, one of the first things I thought of this morning was the weather - what were the pavements like? You see, it is one thing for me to slide about a bit but I cannot hold Sarah's hand while I am pushing and therefore I would not be able to assist her to stay upright if she slipped. James offered to take her up to pre-school and part of me really wanted to say 'No, no, we'll be fine thanks' but I had to step back and accept his offer because it wasn't about me being able to make it up there and back...it was about me being able to ensure Sarah's safety. I accepted James' offer and watched them toddle off up the road hand in hand.......I would be lying if I said that no part of me wished that that could have been me and Sarah - we may not be able to walk along holding hands but there are plenty of other special little things that we can do that make up for that.
I made a cup of tea and pottered about and then James came home - he confirmed that we had made the right decision as the pavements are laden with ice and there were several times that Sarah slipped and she would have fallen if James had not got hold of her hand.
This has really shown me that that are times when it's not about how I feel about me potentially missing out on things because of my disability but more about how it impacts on others and trying to make the right decisions......we made a good call this morning...thank you James for stepping in xx

Sweet Sixteen.....

Mon, 30 Jan 2012 11:43:09 +0100

It was a rare occasion this morning that I took Sarah to pre-school as James has a day off work. (Normally, he takes her in the morning and I collect her in the evening). I went in to take Sarah a cup of tea and she said "What are you doing Mummy?" I said I'd brought her a cup of tea and she clambered out of bed and on to my lap....."I'm having a game Mummy...that I lost my home and someone had to help me find it".......I asked her how her toe was (as she stubbed it yesterday) and, after a coming up for air from her cup of tea, she replied "F for Fine!" with a grin on her face. "Oh, that's good" I said and she said "D for dog, D for Diamond, D for Daddy!" (I could tell that she had been awake for some time!!).

"Are YOU taking me to pre-school today Mummy?" "Yes, darling, is that OK?" "But you can't Mummy because there is a step...there are two steps Mummy" (she has her breakfast in a different room to the pre-school room that I collect her from in the evenings, but you can get to it two different ways, one of which has level access). "It's OK honey, there is another way".

How sweet that she should even consider that, never mind at that time in the morning!

We got her dressed and ready to go and on the journey, out of the blue she said very earnestly "Mummy? I think I have stopped talking about willies now" "Oh, have you, what on earth made you think of that?" "I don't know, I just think I have stopped now Mummy".

This is pricelees! She has, of course, gone through the whole 'You've got boobies and Daddy's got a willy' thing and I did mention to James the other day that she had mentioned willies quite a few times of late but we haven't made a big deal of it to Sarah so this 'development' came as a surprise!

When we arrived at pre-school and I parked in a different car park to where James normally parks, Sarah said "Oh, I remember this way, you're right Mummy, there is no step!" and sure enough, I was able to drop her off fine.

It's 16 years ago today that I had my accident and I have all that I could ever hope for. You are the icing on the cake Sarah and I feel very lucky and privileged to be your Mummy xx