Friday 28 September 2012

Ten Tips to Surviving Medical Appointments

Having a premature baby often means having quite a lot of appointments. I used my little group of parents on Facebook for help too, and here are my top tips.

  1. Ask about choose and book for new appointments. For our recent referral to a consultant we used choose and book. I was able to choose the time, date and location which I found really helpful.
  2. Know what the appointment is for. Sometimes other specialists will make referrals to other professionals, so its useful to have this clarified if you receive a letter on your doorstep you weren't expecting.
  3. Make a note of any questions or concerns that you have. It's ok to write these down and pass them over to the consultant. It can be helpful to ask other people involved with your child if they have anything they think needs raising,
  4. Arrive with some time up your sleeve but not too much. I made the mistake of arriving at Monday's appointment 20 minutes early and the consultant was half an hour late.
  5. For older children role play can be useful. Joseph loves playing doctors so I got him to pretend he was examining my hips and feet. Make the trip as fun as possible. We took a taxi, a tram and a bus to the hospital, and played games on the way.
  6. Take distractions. A lot of the parents who responded on my Facebook question use iPads, we don't have one. For this appointment I just had "mucky" the comfort blanket, and some books. At the Children's hospital they have an amazingly well equipped room.
  7. Bring snacks. Some mums bring chocolate buttons etc. For long appointments I tend to bring a little packed lunch. For this one I used Macdonalds as a bribe (bad parenting there but I don't care!)
  8. A great tip from one of my expert parents is that for very involved appointments ask for a play therapist to come in and keep the child busy whilst you ask questions.
  9. Bring some children's magazines, they often have toys and stickers and can provide good, inexpensive distraction. I tend to keep all ours and reuse them for craft projects too.
  10. It's absolutely fine to ask for clarification, for information to be written down, and for second opinions. Medical appointments can be daunting, and a good consultant will be able to address your concerns and put your mind at ease.

Wednesday 26 September 2012

Astute Mum? Me?

On Monday I took Joseph for his long awaited appointment at Manchester Children's Hospital to see a consultant about his walking.

Unlike many of his other appointments, I wasn't nervous. I think now Joseph is 3 I am far too busy managing him to have much time to mither about appointments. A little tiny part of me was a little concerned that perhaps something had been missed with his hips, but not too worried.

I love Manchester Children's Hospital. It's shiny and new, which helps, but its very laid out, and the waiting room for outpatients has lots of toys, and even volunteer playworkers. It's a fantastic place. I suspect my creepy child does have some sort of memory of being there, as he looked upstairs and said "please don't make me go up there again". Joseph had hernia surgery here when he was 7 months old....

We saw a really lovely consultant, who spent a lot of time talking to me, and watching Joseph. The first thing she did when we entered the room was obtain another box of toys, as she quickly realised that Joseph was a very busy little chap who needs a lot of stimulation. She started by asking lots of questions. She asked if I had any problems with his expressive language, to which I replied "he's a little too expressive at times - which she was soon to find out!

He wasn't that impressed with being examined, which helped show off his sentence structure "I can't take my shoes and socks off, its raining, and I want to go and have something to eat instead". The doctor was very impressed!

She managed to have a quick look, and thankfully, as expected, Joseph does not have any spooky hip dysplasia, which I have to admit crossed my mind briefly. He is very hypermobile, and can quite easily suck his toes, which he never did as a baby but certainly does now (ewww I know where those toes have been....)

I explained that Joseph had never really had interventions, that I've just let him develop at his own speed, with the occasional physio visit and orthotic visit just to make sure he is on the right track. The consultant asked what clinical experience I had or whether I was just an expert premmie mum!

She said that my decisions had been very astute, and she was very pleased with his progress. She said unless he was falling and hitting himself, losing teeth, bruising, bleeding she would be more than happy just to let him continue on.

I felt enormous relief. I guess any parent, whether you baby is premmie or term, has no idea what is right or wrong, and just makes it up as they go along.

When you are a member of the international premmie community and hear tales of early intervention, regular physiotherapy, occupational therapy involvement, you wonder whether the "hands off and leave em to it" approach is the right one.

Joseph was very pleased to get to the end of his appointment, and most excited to run through the puddles to "the cafe".

I am so proud of my little boy, he's a star!

Wednesday 19 September 2012


Not me, my computer. It has suffered a toddler related accident and is off to hospital.

However, it is clear that Social Media (darling) and blogging have loomed too large in my days, and I have taken it as a sign that I need to get my house in order, figuratively and literally.

I am currently working on my diploma in Health and Social Care and fear I am falling behind due to life, as well as the blog, so I am going to try having a break from blogging for a bit.  My long term plan is to write a book and have a website, that contains all this information in an easy to read format rather than searching through posts. For now I am stepping away for a bit. I still very much want to be involved with Bliss, Tommy's and Sparks, but maybe using other social media more, with the blog just in the background, but we'll see.

The IBS I was diagnosed with over summer is getting harder to control and I know its because I am putting myself under too much stress to be all things to all people, and I can't keep doing that.

I am also suffering from PTSD more than I like to admit. I am dwelling more on what happened, and the ramifications, and am finding the blogger baby boom very difficult to manage personally. I am thrilled and delighted for my blogging friends and don't want to rain on anyone's parade, but for me sometimes, its really hard. (and I am crying in the library - not cool)

I feel I need some time to reassess what I'm doing and get a better balance. I want more time to glue, playdough, paint, make mud pies, collect autumn leaves, make stick dinosaurs, sew, knit.....

So we will see what happens in the coming weeks. I'll still be around with limited access either at my local library where I am now, or on my phone, and can still be reached on Twitter and Facebook from time to time.

Tuesday 18 September 2012

Chocolate Swirl Cheesecake with Total Greek Yoghurt

When Total  Greek Yoghurt asked me to take part in their recipe challenge I was delighted. I am not a food blogger, but I love to cook, and I love Total, and have been purchasing it ever since it arrived in the UK.

Toral have released 1000 recipes using Total Greek Yoghurt and are running a Treasure Hunt to celebrate. There are 30 recipes in total, across different blogs. All you have to do is find as many as you can to be in with a chance to win £800 worth of kitchen equipment. More details and how to enter are at the bottom of my post.

I chose the Choclate Swirl Cheesecake and was sent all the ingredients to try it out.

I have made a few cheesecakes in my day and the recipe made me a little nervous. I've made two types, a baked cheesecake and set cheesecake with gelatine. This only had yoghurt, cream cheese and a little bit of icing sugar so I was a little worried it might end up a gooey mess.

Resisting the urge to add a leaf or two of gelatine, I stuck precisely to the recipe.


First of all I introduced the biscuits to the food processor.
Then added the melted butter and agave nectar (more about this later) and popped it into the bottom of my springform tin (ungreased)

Now for the star of the show Total Greek Yoghurt. Now if you've never used it before Total is very different than Greek Style Yoghurt. It's very thick and creamy, think a cross between whipped cream and double cream with much less fat. 


I popped the whole carton of yoghurt in, together with the cream cheese and icing sugar into my beautiful Kitchenaid and gave it a good whipping.

 And then spread the luscious thick topping onto the base.
 Finally under the watchful eye of my sous chef I added the chocolate swirls.

After a day in the refrigerator here is the end result, which came out of the tin perfectly.

The cheesecake was absolutely divine, however here are a few pointers.
  • The Lyle Chocolate Syrup was the wrong product to use for the topping. I knew it would be as I buy this for Joseph. It wasn't rich enough or thick enough, so it formed a coating rather than ripples and didn't contribute to the flavour. When I make this again, I will make my own chocolate sauce with 100grammes bittersweet chocolate and 200 mls cream.
  • The agave nectar wasn't required. I never sweeten a digestive biscuit base and found this unnecessary. However if omitting it you will need to add a little more sugar to the cheesecake mix.
  • The recipe states that if feeds eight. What it means is it feeds 8 Tasmanian lumberjacks. For a family of four I would use a smaller tin and half the mixture. 
  • I am dying to play with the recipe. One of my favourite recipes is a Turkish Delight Cheesecake which is a fiddle and a half, and I am going to try and modify this recipe. I also think a chocolate ginger version would be divine, or lemon ripple with lemon curd on the top. 
  • This is a perfect recipe, in particular the filling, as there are no eggs, no gelatine, and its so easy to make. It will most certainly become a regular in my repertoire.  
Total have hidden away 30 TOTAL recipes on 30 different blogs across the web. Can you find them? If so, you are in with the chance of winning Paul Merrett’s Ultimate Chef’s Kit, worth over £800. On the tab you'll find clues leading to 10 of the hidden recipes and over the next few weeks, we’ll be posting additional clues on our timeline to help you find the final 20. The more recipes you find, the more times your name goes into the draw and the more chances you have to win! The recipes are part of our brand new recipe collection 1000 Ways to Love your TOTAL.  To take part go to the app on thek Facebook page.

Monday 17 September 2012

Borrowing Blogger's Bumps - Spark's Charity Bump Campaign

Beautiful aren't they?

Sparks Charity asked me to share my bump photo and talk about my bump, and what it meant to me. My hopes, my fears.

But I didn't get one. A bump that is.

I delivered my baby at 27 weeks, I didn't get a bump, I got a baby in a box. Pre eclampsia is one of the conditions that Sparks is researching, the very reason my bump was robbed from me.

Did you know that in the UK over 3000 babies will die before their first birthday.

1 in 30 babies are born with a condition that may affect them for life.

Sparks are laumching their Bump campaign and there are some fantastic ways to get involved, find out more here.

Sparks fund research in many conditions affecting mums to be, babies and children.

Every mum to be deserves that bump, and every baby inside that bump deserves a happy and healthy future.

I can't thank enough all those who let me borrow their bumps. I have more who offered to help too, and will share these later in the week. If you have a bump picture you would love to share, please get in touch.

Huge thanks to the following.

A Mummy Too

Circus Queen


Emmys Mummy

Ghostwriter Mummy

Little Lilypad

Looking for Blue Sky

Mummy from the Heart

Missy B & Family

The Mummy Adventure

Mummy Alarm

Ramblings of a Suburban Mummy

Seasider in the City

Stars & Roses

Stephs 2 Girls

Thursday 13 September 2012

Parenting - What is all the fuss about?

There is no way to be a perfect mother, but a million ways to be  a good one......

Lately I have read a few posts and comments about people sick of feeling criticised. The big buzz word in parenting at the moment is Attachment Parenting. I read a lot about this when I was pregnant and pretty sure that that was the way I wanted to roll. Extended breastfeeding, babywearing and co sleeping. I wanted to baby led wean, and use cloth nappies, I wanted that closeness with my baby, that secure attachment, I had waited so long to become a mum, I couldn't wait to experience all that.

And then, clang, it happened. My baby was cut out of me at 27 weeks and put into a plastic box and there he stayed, in variations there of for 3 months. About the most opposite to attachment parenting as you can get. There was a deep pain in my heart, that even holding my baby required military  like precision, not to mention permission, which could be denied at any time, for sometimes spurious reasons.

But this taught me something. Above all parenting needs to be pragmatic, not dogmatic. Every baby is completely different, every situation is different, each parent comes with their own set of philosphies, ideas and principles, and that's ok.

For me, I had to pick and choose. Co-sleeping for us was out, as Joseph was an extremely low birthweight and premature, so we didn't do it. We compromised and co slept on holiday, which we still do. I did baby wear a lot but not all the time, we did use a pram as well. Breastfeeding, as is well documented, didn't work out for us in the end, despite trying hard. And that's ok too. We used cloth nappies, much to the amusement of my neighbours. Some parents thought I was passing judgement on them, but its not for everyone and that's ok.

I found having a premature baby liberating, in that everytime someone queried or even criticised what I was doing I would just say "its different for prems".

But now I have a preschooler I am finding it happen more and more. I am not going to link to it, but I was completely shocked when I wrote my post about why I don't use the naughty step/corner at the strength of feeling at those who do, like I'd taken them to parenting court and had them charged!  I thought I was just writing a post about my own thoughts on the matter, not being judge, jury and executioner. I think its a shame we can't talk about parenting in a non emotive manner, and live and let live

Raising kids is hard. It's hard to know what to do, and I love sharing ideas and experiences. With the potty training and the poo issue talking to other parents has been invaluable. Whoever would have thought about giving poo a personality? I wouldn't have done, and my talks with Joseph about poo and what it likes and doesn't like  has made a huge difference (as well as a touch of old fashioned bribery!)

I love finding out the different ways people do things, and I like to think that I am not judgemental, just because you may not do things the way I do, doesn't mean they are wrong. I do think though, its important to think things through, and find out the rationale for different approaches, not just do things because that's the way Gina does it or Supernanny. Parenting as in life, its good to make informed choices.

Above all, be true to yourself and your family, and if you don't like an article, close the book, shut the browser and move on. Life is too short. 

Wednesday 12 September 2012

Prejudice and Having a Husband with a Disability

At the age of 8 I first experienced prejudice. My friend's mother fought for her child to attend mainstream school, this was the big bad 1970's. This little girl had down's syndrome. The principal of the school called her "a mongol". I raged.

Our page boy Ethan at our wedding

At university a lecturer came to see me. He said he had a student recently diagnosed with MS, his office was on the 3rd floor of the building, there was no lift. He suggested they hold the meeting on the stairs. She complained, he asked for my advice. I told him to apologise profusely and borrow an office on the ground floor. He was only trying to be accommodating but he was patronising - a form of prejudice.

I worked in the disability field and I saw two types of prejudice, the grinding societal inbuilt prejudice, and individual episodes of prejudice - people refused service in bars on the basis of their disability, refused to fly, turned down on dates. I had many an argument with bar owners or restaurant managers. "No this person is not a fire risk. Yes they are in a chair. The chair has these things, you know wheels? I can get him out in a fire quicker than you can walk". Or "Yes this person can have a drink, they are older than me, older than you even. Now give us a beer there's a good man".

Prejudice like that riled me, made me angry, spurred me into action. I have been a (voluntary) citizen advocate for people with disabilities, I've chosen to work in various paid and unpaid fields, and then.....I met Corey.

The first time it happened was when we were walking back from the pub one Friday night. Some hoodies through a glass at us and shouted abuse. Because my husband has a disability. The cute thing is, some people assume his disability is intellectual because of the way he looks (which is due to falling off a bike as a child and having stitches in his lip!) and are shocked when he comes back at them. We called the police and the matter was dealt with. But it left me shocked. I had never seen anything like this before. I was angry, and a little scared. People have strong feelings about disability, even in the 21st century.

The second time was also at a pub (lesson number 1 disabled people must not go out at night), we had been for a meal and were meeting friends in a local establishment. I was allowed in Corey was stopped. "Sorry you can't come in". He was ready to walk away but I was having none of it. "Why?" I asked. "Because he's drunk" said the bouncer. "Ok, how have you arrived at that?" I challenged. "Surely you can see the way he is walking, clearly inebriated, no service." I was riled. "Corey has arthrogryposis mulitplex congentia, would you like me to spell that for you? He walks like this as his legs have been broken and reset several times, he also has metal pins in his wrists, would you like a medical report before you let us in?", magically the doors opened.

Another form of prejudice is the "hero" tag. I often get "aren't you amazing?" I am not amazing. The first thing I noticed about Corey was his cute bum. I didn't notice the disability, it never concerned me. Apart from other people's attitudes, we do just fine. Yes Corey has some limitations but we get Disability Living Allowance to help us overcome those. Corey's car has adaptions. We are lucky.

Perhaps the worst, and something that hurts to this day, was when I was diagnosed with the pre eclampsia. I gave consent at 2pm. Everyone was positive and ok about things. At 8pm the midwife walked in with some paperwork. I could see some printouts about Arthrogryposis Multiplex Congenita. I knew what was about to happen, and I was furious. "What on earth is that?" I demanded to know. "This is a hard conversation to have but we need to discuss the possibility that the baby may have this condition and you will need to think about whether you want us to withdraw treatment."

Dear reader, for only the second time in the life of this blog I am going to use the "f" word. I said to her, and I'm not proud of it "well you can fuck right off with your print outs, not up for discussion". I was so angry. My own anger scared me! You see, all over my notes was "declined pre natal testing". My husband and I were both crystal clear we were having a baby, whatever the outcome. The thing about arthrogryposis is is that it is rarely genetic, and it should be picked up at 20 weeks anyway. We had had two scans with no abnormality detected, so it was highly unlikely Joseph would have had arthrogryposis anyway. If he had we would have dealt with it.

Now reader, I am not passing judgement on those who have had medical terminations. We live in a world where there are choices. I may not always agree with the choices people make, but I defend their right to make them. Not everyone can bring up a child with a disability, the outcomes are not always happy ones, and thankfully we can do much better now, that putting children into loveless institutions. There are choices.

I fear though, that for tomorrow's adults with disabilities, prejudice will get worse, not better. Had ultrasound been around when Oscar Pistorius was a foetus, would he be here? The lack of bones in his calves would have been detected. Will we see in 20 years time a Paralympics with acquired disability only?

Prejudice is real. I think the Paralympics have been great for making people think twice, but they are over now. Are we going to take these lessons and apply them to all walks of life? Are we going to make real, worthwhile employment for people with disabilities a reality? Are we going to preserve the benefits that give people with disabilities real opportunites?

It's time we had frank discussions about our attitude to disability. We pretend its no big deal, we cheer when someone with a disability does something amazing. But what sort of future will the little boy at the top of this post have?

It's up to us, isn't it?

Tuesday 11 September 2012

Stop the Press! Hold the Front Page!

I can't not blog about this. I have previous for blogging about poo and this just has to be said. I was wondering how to approach this blog post about poo and I found, rather fortuitously, that the lovely Karin from Cafe Bebe had posted these blog prompts for Britmums, Pride and Prejudice. Prejudice might be for another day. This post is about Pride. Pride about poo, never did I think I'd see the day I blogged again about poo.

So in the summer holidays, like parents around the country, we decided to tackle the big P. Potty training. Joseph took to it easily and got the hang of wee very easily, to the point where on day 1 we were able to go the the supermarket without a problem. I have been amazed at how easily Joseph has trained and *touch wood* hasn't had an accident at pre school as yet!

But our nemesis has proven to be poo. In the heady early days Joseph did a big one on the potty and I was really happy, but it was an accident. For weeks and weeks he's been pooing into a baby wipe, on the floor, a rather spectacular one on a window, and most recently on the grass outside. The problem with toilet training an older child I guess, is you can't just physically pop them on the potty. Joseph just refused to sit on the potty or the toilet, and there was little I could do about it.

I turned to my parenting forum for help and found the refusal to poo is not uncommon. Most suggested bribery, which hasn't worked so far. One friend suggested giving poo a personality! Explaining that the poo doesn't like to be squashed in knickers or smeared on the floor, it likes to splash in the loo or plonked in the potty and flushed away.

I made a point to make Joseph aware of when I was going to the toilet. We practiced poo faces and pushing, and we talked about poo. I also said that when he did a poo on the loo or the potty he'd get a spiderman toy.

And yesterday he did the same thing he always does came to me and said "there's poo coming" I suggested I take him to the toilet and he said "no mummy I poo on the floor." I thought for a moment and said "ok, mummy is very disappointed that you won't use the poo or the toilet like a big boy, but ok". And I walked away. Next thing I heard was a gleeful "mummy I pushed my poo in the potty!" And there it was. (I have spared you a photo!!!)

We danced, we laughed, he rang daddy straight away, we're so happy!!!

So moving forward, he's getting a spiderman toy, and I'll start a sticker chart, and once he has 10 stickers spiderman can get a friend!

I am just so relieved. The little preemie voices were in my head saying "maybe they were right maybe there are lasting problems" etc etc, so I am just so glad it was normal toddler obstinance and fear and not anything sinister!

Monday 10 September 2012

Wait and See - Don't Write My Baby Off Just Yet

For a while now I've been thinking about a post about doctors and very premature babies in the NICU, and then discovered to my delight the gorgeous and talented Jessi at Life with Jack had got there first. I love it when that happens! I wanted to add my thoughts.

Dear doctor, my baby is 2 weeks old. You have just told me he will never eat or drink and be tube fed for life. I am scared. You see, I have worked with children and adults with special needs, and I have assisted with feeds before, and I don't want that for my son. Please, don't write him off just yet, let's just wait and see.

Dear doctor, my son is 3 years old. I am constantly trying to find ways to eat his broccoli, to try some peas, to eat something other than fish fingers, cakes and ice cream. He spills his drinks everywhere, leaves half eaten apples in parts of my house I never knew existed, and throws a tantrum if his banana breaks whilst he's eating it. But it's far preferable than being fed by a tube.

Dear doctor, my baby is 4 weeks old. I know, the pooing is an issue. He's not pooing regularly enough, he gets bloated. But really? Do you really think he'll need a colostomy bag? You see I've looked after people with colostomy bags. It's not the end of the world, I know, but they split, they don't like being hit with footballs, finding the right device and adhesive is such a pain. Can we just wait and see?

Dear doctor, we've been potty training for 8 weeks now. Joseph loves his potty and his toilet, he has a funky toilet seat, he's great. He wees at pre school, he loves to get "caught short" so he can wee on the grass. But won't poo on a potty or toilet. He prefers the carpet, if I'm really lucky the laminate, or if I am really really lucky the grass outside. But it's far preferable than a colostomy.

Dear doctor, I know Joseph has taken a while to get off CPAP, I know his breathing is an issue and he desaturates at night, but really can you tell at 6 weeks old that he'll need oxygen at home? I know its not the end of the world, it means having a cylinder in the house, and a transport one for out and about, I know we will manage, but can we just give him a chance?

Dear doctor, my son won't stop singing and shouting, he blows candles out in church, and other kids birthday cake candles. He is full of hot air (some would say like his mother). But I wouldn't change it for a minute.  

Dear doctor, yes I know Joseph is 18 months corrected now, and really should be walking. I know you are worried, but honestly he's just on tip toes because he wants to reach your sink, and your chairs are too high. My son comes from a long line of late walking, really, don't call it cerebral palsy yet, it's far too soon, give him until he is 2 then you can worry, please?

Dear doctor, I am very concerned as my son runs faster than I ever can, in the supermarket, on to roads, dangerously near rivers. He is never still. He climbs up walls, on to window ledges, over fences. He is racing about everywhere, and I need eyes in the back of my head. But it is far preferable than him being in callipers or a wheelchair.

Whilst this is somewhat tongue in cheek, my point is this. All of the above was said to us. It was said in a factual way never with a "in my opinion" or "in my experience". Opinion is important in medicine, of course it is, but it needs to be put as that to parents. In our case the doctors treating Joseph had not had a large amount of experience with 27 week gestation babies. I had enough medical background to ask the right questions "on what are you basing this?", "what are the chances of Joseph needing PEG feeding/home oxygen/ a colostomy bag?"

When we have a premature baby we are thrust into an alien world of machines, staff, terminology and opinion. It's hard to navigate through all that, and keep positive.

Our primary job as NICU parents  is to believe in our babies, even when things are looking less than bright. Babies are amazing resilient little creatures, and sometimes doctors can forget that.

Believe in your baby. 

Thursday 6 September 2012

4 Years Ago Today - My Wedding in Pictures

I have serious wedding envy at the moment. I loved planning our wedding, and I love our photographs, taken by two dear friends Jen and Chris. I tasked Jen with taking the minutae of our day, all the little details, and Chris with bigger shots, and it worked great! So here are some pictures of our day.

My sister Penni and her daughter Frederique

Bridesmaid's bouquet in the window

My gorgeous husband on the left with the dashing best man

My sister @eglantinescake reading poetry

Some of our guests

Walking to the train station

Enjoying the sun waiting for the train

Stealing a kiss on a stolen train!

Never travel to Ramsbottom without a brolly!

Having 5 minutes before heading to the reception

Silly wedding t-shirts!

Tuesday 4 September 2012

What The Paralympics Has Taught Us

And what some of us already knew!

I love the paralympics. I have worked in the disability field as a volunteer and then in paid employment, on and off for 25 years. The Paralympics is a rare opportunity for the general public to see people with disabilities do remarkable things. Some of us are lucky enough to see people with disabilities do amazing things every day. During the course of my career I have seen amazing things. A man who could not speak given a computer at the age of 13 and suddenly able to communicate and attend university. Another young man with spina bifida and rods in his back doing indoor rock climbing.  My husband happens to have a severe physical disability, arthrogryposis multiplex congenita, the same condition as Will Bayley

I think a lot of these lessons can absolutely be applied to us as parents, and to our children, especially those born prematurely. 

Sport is amazing therapy - It's no surprise to me that the Paralympics started at Stoke Mandeville Hospital. Sports like swimming are so popular because swimming is a major part of rehabilitation following injury or sudden onset of illness. Sport is fun, promotes achievement, and gives a warm fuzzy glow, whether you win or not. Paralympics is sport at an elite level. Not every person with a disability will be a paralympian, but sport in some way can be enjoyed by us all, whatever our limitations.

Disability is not the end - it can be a stunning new beginning  Who hasn't been moved by Martine Wright who lost her legs in the London bombings of 7/7? Her injury occured the day after London's winning bid had been announced, and she kept the paralympics in her sights as an integral part of her recovery. Bradley Snyder lost his vision whilst in Afghanistan in just September 2011 and here he is winning gold in the Paralympics in 2012. One of the most powerful things I learnt in my disability training course in my early 20s is that all of us are just an accident away from a disability. But we can still fulfil our potential and have an amazing life worth living.

People with disabilities are not angels and should not be put on a pedestal just because they have an impairment.  Many moons ago I did an amazing course about Wolf Wolfensberger's theory of social role valorisation. It was all about challenging the roles we put people with disabilities into, and about empowering them to achieve their full potential without these contraints. The reactions of Jody Cundy and Oscar Pistorious remind us that people with disabilities are just like any other athlete, they have their ups and down, and aren't always gracious, and that's ok. Sometimes its ok to be pissed off, whether you have a disability or not. I think its disappointing that the coverage of such outbursts by the media has been so over the top, and I think this gets back to my point, that sometimes we think people with disabilities are angels, are better than us, and should be grateful, and when an athlete like Jody loses it, it becomes a spectacle.

Humans are incredibly adaptable I was watching the high jump on Monday night. Now I have two perfectly good legs and have never mastered the high jump. To see what these athletes can achieve with one leg is truly inspiring. Their actions are each completely different, they find the technique that suits them the best. Whilst devices like Oscar Pistorius' blades or Jody Cundy's amazing leg are awesome, it's the human body's ability to adapt to adversity, and to overcome which is truly inspiring.

The media are still well behind the diversity 8 ball I think some of the coverage has been wonderful, and The Last Leg show with Adam Hills, who himself has a physical disability, is boldly breaking down stereotypes and taboos. However some of the coverage in the media has been pretty woeful. Sometimes just ignorance about the impact of impairments, or making too big a deal about the impairment rather than the achievement have let the side down. I think the remedy is to have more coverage of positive stories about people with disabilities in the media all the time, rather than just 10 days every 4 years. Practice makes perfect. But, at least the UK is trying, and the coverage is sound, in Australia they are having just 2 hours a night of highlights.

Technological improvments are not universal Looking at the medal tables, and even just the athletes parading our in the opening ceremony, it's clear that rich countries are at an advantage. If you look around at some of the wheelchairs and other adaptive equipment, some athletes are doing it tough. We need to do much better at making technological advancements made available to people with disabilities around the world, whether they are athletes or not. It's not a level playing field.

Disability isn't always obvious Often disability is hidden. The Paralympics, with its classification system, makes it clear who has what and what the impact is. But you often can't tell who has a disability and who hasn't. 

Believe and you can achieve It may be a cliche, but the biggest obstacle any of us have is in our minds, our self belief, it's not our physical limitations, it's our mental ones that hold us back. The Paralympians teach us that if we do not believe in ourselves, we have lost.  

Monday 3 September 2012

A Carer's Thoughts

A few months ago I did a training course, and was shown this film.

The poem is doing the rounds on Facebook lately, no one knows for sure who wrote it, but it is very moving and I would love you to view it first. You can find whole print outs of the poem should you wish to read it. These thoughts came to me at work today. It is not based on any one in particular.

You did not choose me, you do not know me
You let me into your home, into your most intimate rooms
I can see the photos on your wall, your family
I observe the way you stroke your clothes, looking at the seams
Once you worked in those dark satanic mills we sing about in Jerusalem
And now you are living your own version of hell.
You can't remember your name, or where you live, but you can sing "Danny Boy"
You cannot move, you cannot walk, you cannot follow through with a thought to its completion.
I lift you up with a standing frame and you have no idea how you are moving. You are scared.
I reassure you, keeping my voice level, my tone light.

I see my grandmother, my mother, myself. 
Dementia, Alzheimers disease, stroke, they are no respectful illnesses, they strike anyone.
One day this could be me, with a fresh faced carer, brightly undressing me, washing me, feeding me.
I bring you magazines, I show you pictures. You love looking at the frocks.
A memory, of floral dresses, tea dances, of friends, of courting. 
This memory is old, 40 years or more but it could be yesterday. It is precious.
I get a notebook, I write as you talk, I clip the picture out that has prompted this.
I put it away safely in your file, a tangible record of a once precious memory.

When I see you, I see a mother, a friend, a lover, a sister, a daughter, a worker, a homemaker, a dancer.
Dementia might have threatened to take these things from you, 
But we won't let it win.
We must not let it win.  
I see you.