Tag Archives: cerebral palsy

Being a working mum

E smiling with a hat onGuest post from Sonia, a single mum to a 10 year old with cerebral palsy. She’s started a blog for families of children with additional support needs

Victoria Beckham talked about the difficulties of being a working mum and though we’ve nothing else in common, I can empathise with her on that.

My bright, articulate, humorous daughter has cerebral palsy and needs help to sit, stand, walk and with all aspects of her personal care.

I’m a single mum and really had no experience or expectation of disability before my daughter was born so not working was never on my radar. Here are some of the things that have helped me to be a working mum:

A supportive workplace

I changed career four years ago and now work full time as a teacher. During term time is a full time job but the school holidays help make it manageable.

From day one in my current job, I have been upfront and open about the difficulties of being a parent of a child with disabilities. I don’t believe I get treated any differently from another employee who has children but I think I am more conscious of my different needs.

There are some things that just can’t be arranged outside school hours. The big one being school review meetings. Yes I still feel awkward asking for the time, but my workplace are very supportive and I’m never in any doubt that the time will be allowed.

Our nanny

To be honest, without our nanny, I couldn’t work at all.

Having a nanny means that I can ensure specific things get done. Yes she is able to work through a weekly physio programme and attend appointments and home visits for equipment, support clothing measurement and the like. But as a nanny rather than a care assistant, she is able to support the social side of childhood, creating opportunity to cement the friendships my daughter makes.

I got my nanny through and agency and she’s been with us for seven years. We’ve been able to do all the moving and handling training and assessment on the job as my daughter’s needs changed. I also ensure that she is invited to all of the therapy and review meetings as when working, she is effectively me.

Communication

If you have a child with additional needs then you will have your own long list of therapists, specialists and consultants that are involved in the care of your child. When writing my blog, I started to make a list of everyone we see and I realised just how challenging trying to juggle them all could be.

I cope in two ways. Firstly I’ve made sure they all know my working arrangements and secondly I write things down.

All the therapists know and understand the situation. So they are happy to communicate by e-mail and will always offer home appointments at the end of the day and start blocks of treatment during school holidays. This runs like clockwork to be honest.

Consultants again once the situation is accepted, recognise that we can’t come every three months to a Monday morning clinic. Again this is currently running really smoothly to the extent that when an appointment was rescheduled, they specifically only offered dates in the school holidays.

Tracking and planning

You can’t keep all the dates and information in your head, or at least I can’t.

I have a smartphone to deal with e-mails as they come in and a Filofax for everything else. The Filofax is used for appointments, therapy tracking, recording concerns between appointments and creating agendas and tracking actions from meetings/appointments. It’s always there for the nanny to see and use too.

Read Sonia’s blog, All Born In. If you’re a working parent, what things have helped you?

Harry’s cards

Anna, Harry’s mum, talks about how they came up with the idea for Harry’s cards, and the benefits he has found using them.

“After chatting with him about what to do, we came up with the idea of a set of small cards designed just for him, about him. Each card would have a question and a simple answer to that question. To make them personal we picked a photograph or picture that meant something to Harry.”

In Harry’s own words…

“I came up with the idea when people started asking me “why do you talk funny?” and “what is epilepsy?” so instead of trying to explain it I made these cards and gave them one. It has the question on the front and the answer on the back. They are my very own as they are about me and have a photograph of me on them as well. They help me.”

Anna continues, “We had them designed and sets printed. They are business-card size and a set of them can be kept in a little plastic box. Now when Harry is asked or even if he wants to volunteer the information, he can simply hand over a set and let people read. They also act as a good ice breaker and support in other discussions on cerebral palsy.

“He has presented them in his class and sets of them are available at his school, they are small enough to carry around in his bag or even his pocket. They can over time be added to and changed as Harry grows and develops.

“A simple idea but one which has proved to be very useful in removing the ‘elephant in the room’ (discussing his condition).”

Inspiration without condescension

Guest post from Nick who blogs as Marzipanman. You can also follow him on Twitter.

A week or so before the Paralympic Games started, comedian Laurence Clark wrote in The Guardian:

“I came to realise that the less fortunate you are perceived to be, the less you have to achieve before you’re labelled ‘inspiring’. It was a polite way of people telling me they thought I probably wouldn’t amount to much, but had somehow surpassed their low expectations.”

When I first read this I thought it made perfect sense. After all, what frame of reference do I have on which to base any kind of disagreement? I could see his argument – why should his achievements (or otherwise) be considered any more inspiring than anyone else’s, just because he happens to be disabled?

But then the Games started and something unexpected happened – I started to disagree with Laurence, for a very specific reason.

My daughter Robyn

Robyn was born two years ago, the younger of twins and eight weeks premature. Two days after she was born we were told that she had experienced a severe bleed in her brain before, during or after her birth and that this was likely to cause her permanent damage. We were told that the prognosis was not particularly good.

Happily, Robyn is developing well, far better than that early prognosis. She’s not walking yet and has limited mobility down her left side, but thanks to support from NHS professionals and an undoubted strength of character she is shuffling around on her bottom, developing her vocabulary and generally taking over the household!

That said, I worry about her. From the moment we were told Robyn would probably have some form of disability, most likely cerebral palsy, I pictured her in a wheelchair, maybe learning disabled, maybe unable to ever live independently. I didn’t want to read about the condition or its effects because I was scared about what lay in store for my daughter.

And you know what? I felt sorry for her. I know that’s not the right thing – but it’s how I felt. She’s my daughter, and I want the best for her – and with the best politically correct will in the world, being disabled doesn’t necessarily fit in with that.

The Paralympics

During the Paralympics I’ve been watching athletes, swimmers, footballers, rowers and other Paralympic competitors, and I’ve paid particular attention to those with cerebral palsy. And you know what? They’re sensational. And not just in a “hasn’t she done well for a disabled person?” way, they’re just sensational.

Hannah Cockcroft has cerebral palsy as a result of two cardiac arrests at birth. Her parents were told that she would never be able to walk, talk or do anything for herself or live past her teenage years. On 31 August she won GB’s first track and field gold medal of the 2012 Paralympic Games in the T34 100 metres race with a Paralympic record time of 18.05 seconds.

Hannah Cockcroft, Olivia Breen, Sophia Warner and others are inspirational to me, and no doubt to parents across the country, because they remind me to look beyond the disability and the struggles that our children will no doubt have, to the chance – no, the likelihood – that they will have lives where they can fulfil their ambitions, whether that’s to be a champion sportsperson, to have a successful career or a great education, to get married and have children or even be a stand-up comedian.

Changing attitudes

I think the London 2012 Paralympic Games has done more for the public perception of disability in this country than any number of well-meaning campaigns or training courses ever could – this is especially timely given the current government’s clear agenda to stigmatise disabled people as benefits scroungers or burdens on the economy.

And it’s also done something for me. It’s made me positive for Robyn’s future. I’ve always seen what a fighter, what a character, what a person she is (and what a pain in the arse she can be as well) but now I have far more confidence that other people will see the same things as well.

Inspirational? Oh, go on then.

Sorry, Laurence.

 

Drummonds residents sensory garden

Drummonds gardeners

In 2011 leading designer and manufacturer of ergonomic tools, PETA UK, donated a selection of Easi-Grip® gardening tools to the residents of Scope’s Drummonds residential care home in Feering to enable them to make the most of their beautiful sensory garden.

A year later, PETA Managing Director Genny Crockett visited Drummonds, which is home to 39 adults with physical disabilities and other needs associated with cerebral palsy, to see how they are getting on with the tools!

Resident Karen, who has lived at Drummonds for 30 years, explained that Drummonds approached Writtle College and asked if they could help with a new garden design to create a sensory garden. “It was a wonderful idea because it gives us something different and fun to do. It took about five years of planning and a lot of fundraising, but it was all well worth it. We thoroughly enjoy it, sitting out in the evenings when it’s nice, and everyone chips in and helps with the gardening. We get out as often as possible and have gardening lessons once a week which is really interesting. The garden gives us a bit of peace and quiet too! I love it because it reminds me of my dad who always enjoyed gardening so it’s a nice way to remember him.”

Passion for gardening

Karen’s passion for gardening has been somewhat restricted over the years as she struggles with standard gardening tools: “It’s frustrating because I know what I want to do but can’t do it! Conventional gardening tools are out of the question but, because of the way they are designed, the Peta tools give me the ability to do gardening and enjoy it.”

Debbie Foster has been a tutor at the Drummonds Centre for six years and teaches the weekly gardening lessons. “We were delighted with the donation from Peta last year! We have so many different physical challenges among residents so it’s difficult to find products they can all use, but they adapt the Peta tools to a way that suits them. They have definitely helped the residents, who find getting out in the fresh air and actually doing something for themselves gives them a real sense of well-being.”

Genny Crockett was delighted to visit the centre and see the residents enjoying their garden with the use of Peta tools: “It really is great to see how our tools are helping the residents enjoy their garden and achieve something they wouldn’t otherwise be able to. They have done a fantastic job developing their sensory garden and I can see why they all love spending time in it. Our ergonomic tools cater for a wide spectrum of users, so it’s important for us to understand how people of all abilities find our products, and it was really interesting to see how each resident had their own method and style of use.”

Peta products, including gardening tools, kitchen utensils and scissors, have been designed in response to feedback from occupational therapists.

Review of GASP

Guest post from Judy Riley – Full House trustee and local arts journalist at the Beds on Sunday

GASP drummer

I just wanted to share my thoughts on this show. I went to see GASP in Bedford at 12.30pm on Saturday, July 21 on what was then the hottest day of the year so far.

I took my husband, my sister and her husband along. While my husband knew what kind of experience he would be likely to have, having seen Cirque Fantastique last year, my sister and her husband had only a sketchy idea of what was in store.

Whereas the impressions that I was left with of Cirque Fantastique were of fun, exuberance, positivity and brightness, at this performance of GASP, in the darkened space of The Place theatre, the atmosphere was altogether more focused and profound. Yes, there was fun; yes, there was energy but it was an experience that went much deeper into the souls and deepest feelings of the young performers involved. It was one of the most moving shows I have ever seen – and I’ve seen a few! The actors were given the opportunity to explore their hopes, fears and dreams in a challenging way but it never felt as though they were being patronised or marginalised. The filmed excerpts were incredibly powerful and the drumming exciting and liberating.

Bedford and District Cerebral Palsy Society actors

As for the input of the Full House practitioners I can honestly say that it was amazing. The sensitivity that Ben, Harriet and the other actor/musicians – displayed was exceptional. I will never forget Ben, through his eyes and his spirit, wordlessly encouraging young actors with massive speech problems to articulate their innermost thoughts. Moving soundlessly across the stage, each member of the team guided the Bedford and District Cerebral Palsy Society actors purposely but with utter thoughtfulness through the action. The show was uplifting and wholly enlightening; anyone who saw it will have been touched by something very special.

I am known for being reduced to a soggy pool of tears at the slightest provocation so it comes as no surprise that I was reduced to racking great sobs within minutes of the show starting but Chris had to wipe his eyes at the curtain call, as did my brother-in-law – and my sister got through at least a handy pack of Kleenex too.

GASP was an inspirational show – not only, I’m sure, for those young actors who took part – but also for every member of that audience.

Congratulations Full House: for me, it’s what being involved with the company is all about…

My personal experiences of Cerebral Palsy

Melissa Parker is 20 and, as a result of a break from education due to surgery, is undertaking A-levels with hopes of earning a place on a law programme in 2013.

I first became interested in writing about my personal experiences of Cerebral Palsy when I read Andrea Dworkin’s article “Through the Pain Barrier” – it provided a forthright, fiercely earnest and human account of pain, disability and aging.

Being “normal”

It was also overwhelming because, having had Cerebral Palsy all of my life, it is difficult to remember that my experiences are not “normal.” They do not conform to other people’s experiences and perceptions. It was a moment of clarity, transparency, lucidity to remember certain times in my life that have been shaded, positively or negatively, by experiences such as these.

As a child I grew up with a mother who was determined that I would be “normal”, I did not in point of fact think there was anything out of the ordinary about myself until I was nine, and why would I? I had most of the customary childhood experiences: I played Mary and hit Joseph on the head, with a providentially, plastic baby Jesus. I would amuse myself by wearing toy high heels on my hands rather than on my feet, I would spend most of my early years as a quintessential tomboy complete with knee-length football shirt, which my mother had bought me as an Easter present, and quite naively as I then thought, assumed I would allow her to return it purely because it was too big. There were moments when my disability would affect existence, though I was apathetic about it, after all I knew and, as I realised when I read the aforementioned article now know no different. I had camouflage splints and a wheelchair which was yellow with red stripes. As I have grown those things have altered and as a consequence physically, emotionally and socially so have I.

I think numerous people automatically assume that disabled children are naturally angelic and my mother has always told me she did not know what to expect of a child diagnosed with Cerebral Palsy. However, what she got was, in all probability, the child most unlike the child she imagined, in terms of temperament, determined, stubborn and inquisitive. I would most often question all and make observations to an, in general, taken aback audience.

Side-effects of surgery

When I had the second surgery, I did have hallucinations I was an axe murderer, vivid dreams where, I admit, my wickedness took on an atmosphere akin to a Robert Louis Stevenson novel. This was as a result of potent painkillers and was a contributing factor in my decision to stop using them soon afterward. I refer to that period as my “Yellow Submarine” phase. Looking back I was a sixteen-year-old girl who had been pumped full of drugs it is no wonder they effected me so significantly furthermore it is also accurate to say that realism is difficult when your perceptions are so altered.

I remember a few things exceedingly, and sometimes dreadfully, distinctly so much is ambiguous and might not have happened, I remember most evidently the one split second of regaining consciousness, an overwhelming understanding that it was going to be arduous, laborious and exhausting nevertheless I was going to get on with it. This feeling occurred after both surgeries it was just, I believe, an innate knowledge that I had to.

I am fortunate to have had my mother as my supporter, the stoic woman I know, from the youngest of ages I wanted to emulate that strength, she has inspired me to fight regardless.

I was recently told that my disability made me determined to succeed I was initially offended by the remark it was so indifferent, listless. I can, after all imagine that any disability gives people determination, fortitude and resolve.

Botulinum toxin A

The one memory I will always retain, etched into my remembrance indelibly, is my experience of Botulinum toxin A, also known as Botox, anyone is considering trying it to treat Cerebral Palsy should not be put off by the following narrative, I am aware that it has helped many. However as I writing about my understanding of the events to inform others I believe it is important to give a sincere account of my experience. I was a young child when I had my first, and only, treatment with Botulinum toxin A, it was not effective however it was a distressing experience. I recall the first sharp pain, just as evidently as I do my Winnie the Pooh backpack, I remember being held down as the others were injected into my legs and I recall, most vividly, wondering why my mother and god-mother, who were both present, did not intervene. I have been asked since whether the fact that the treatment was not effective contributed to my antipathy toward the experience. I do not know. I do know, however, that I am pleased I tried it. One day there may be something which alleviates Cerebral Palsy and it is that knowledge that makes experiences such as these worth it.

The experiences which have built what I refer to as ‘character’ have been numerous and thus far I have been exceedingly fortunate that my physical world has been, comparatively, unaffected however there are instances when one is aware of physical barriers, mobility lessens when pain is enhanced is a truth as I have acknowledged

The one emotion I felt through the years, especially as a teenager, is frustration. It has motivated me immensely; I believe the teenage years are the most arduous phase emotionally, which has made me consider writing something that will be, I hope; an earnest and human account. I recently read Ernest Hemingway’s A Farewell To Arms and was most conscious of the following quote: “The world breaks everyone, and afterward, some are strong at the broken places.” It sums up my views and beliefs about my own disability and experiences.

 

Racing With The Hamiltons: Nic In The Driving Seat

The BBC’s new disability season starts on Tuesday 6 March at 10.35pm withRacing With The Hamiltons: Nic In The Driving Seat.

Becoming a racing car driver isn’t easy for anyone, especially when you have cerebral palsy and your older brother is the world’s youngest F1 winner. In a sweeping one-hour documentary that captures the highs and lows of starting out on the racetrack, Nic hits the competitive Clio Cup to see if he has what it takes to make it as a driver. With his family on the track and brother Lewis on hand for advice, Nic is determined to prove that he can go beyond being disabled to kickstart a career as a driver. But his cerebral palsy and lack of driving experience means that he’s facing tough odds just to finish each race in one piece, let alone do well enough to continue beyond just the one tour. When a high-speed accident threatens to end his career before it’s really begun, it takes every ounce of Nic’s courage to get back in the driving seat. A moving documentary that looks at how one ordinary young man pushes beyond being disabled to take on an extraordinary challenge.

Young disabled people from our Trendsetters project met Nic Hamilton during the making of this documentary, and here’s what happened:

BBC documentary

Increasing numbers of disabled young people have been looking up to Nic Hamilton as a role model, and they were keen to explore this in the programme. They asked Scope if we could arrange for Nic to meet some young disabled people and to film this for the documentary. We thought the Trendsetters would be an ideal group of people to meet Nic so of course we said yes!

It was very short notice but we managed to get Bradley and Kayne to Scope’s head office to meet Nic, and be filmed interviewing him. Jamie Robertson from the Scope campaigns team came along too. Bradley, Kayne and Jamie had some interesting questions for Nic and asked him about his racing career, his adapted car, his experiences of growing up, school and bullying, and his relationship with his brother Lewis Hamilton, the Formula 1 racing driver. We found out that Nic and Lewis play a competitive car racing computer game when they are apart, and that both of them want to win!

Trendsetters project

Nic asked Bradley and Kayne about the Trendsetters project, and they talked about living with cerebral palsy and the attitudes of other people towards them. Nic told the boys that being different isn’t a bad thing, and explained how he deals with any challenges he faces with a positive attitude.

“A wicked day”

The filming took nearly two hours, and we are hoping that some of the footage will get used in the documentary… so look out for Bradley, Kayne and Jamie, they could be famous! Everyone enjoyed the experience, Bradley’s Mum and Kayne’s Dad got to meet Nic and chat to him over lunch and as Kayne’s Dad said afterwards, “What a wicked day!”

Kayne told us that he went go-karting a few months ago, but crashed his go-kart and didn’t want to go again. But after talking to Nic he felt inspired to go back to go-karting and he was getting ready to search the web for places where he could go and get involved.

Thanks to our London Trendsetters and their families for joining us at such short notice, and for proving to be such good interviewers.

Let’s hope we get lots more opportunities like this!

Scope celebrates UK Disability History Month

As part of UK Disability History Month, Scope has worked with British Library Disability Voices to include over 200 hours of recorded testimonies by people with cerebral palsy, aged 50 and over, recorded for our Speaking for Ourselves: an Oral History of People with Cerebral Palsy project.

This two-year partnership with the Heritage Lottery Fund trained 16 disabled volunteer interviewers to record the life stories of people living with cerebral palsy, and now these life story interviews are available to listen to online.

Disability Voices contains unique and moving memories from disabled people recalling childhood, family life, education and work experiences. There are insights into their treatment by medical professionals, the daily challenges of the workplace and of the attitudes of wider society, and their involvement in disability organisations and communities.

As well as providing useful learning material, Disability Voices expects to challenge and inspire a wide range of users: to help people relate their own experience to others in similar circumstances, but also engage with those who have little knowledge of the lives of disabled people in our society.

Ann Pridmore was one of the volunteer interviewers on Speaking for Ourselves: “It’s an exciting and valuable project. Why? Because disabled people are not included in social history. As a disabled woman with cerebral palsy this opportunity to record our history is long overdue.”