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Category: Disability and kids

Disability Awareness for Kids – Its not weird, just different.

Posted in Cerebral Palsy, Disability and kids, Disability Awareness, Disabled Access, Family, Flyinglady Training, Making a difference, and Personal

I was on a train recently, travelling home from visiting my sister and best friend in London.  After a good night out the evening before, I was feeling quite tired and hoped to pass the journey quietly with my Kindle for company.

At one of the stops, a mother with her young daughter got on and sat opposite me.  The daughter must have been around six or seven and was very chatty! There went my quiet journey home but I smiled as the little girl asked her mum question after question,  no doubt driving her mum mad!  Being so inquisitive, the little girl’s attention soon turned towards me and she asked her mum “why does that lady need a wheelchair?”

Staring out the window, I waited to see how mum would reply all the little girl got was “I don’t know” so I decided to try and help. “I have something wrong with my legs, they don’t work properly.” I told the little girl cheerily.  I hoped her mum might engage with me, if only a little bit.

Instead, the little girl turned to her mum, telling her “I sounded weird”.  I’d hoped mum might correct her and explain that the word weird wasn’t very polite but mum just asked her to be quiet – not too much avail.

The incident made me smile but it also saddened me.  Mum didn’t seem interested in engaging or educating her daughter but perhaps, more likely, didn’t know how to and maybe, was afraid of offending me.  But it really was a missed opportunity for the little girl, particularly as I showed my willingness to engage with her.

That’s why I’m so passionate about my “Disability Awareness for Kids” sessions and have decided to offer them for free until the end of this academic year.  Parents and even teachers may feel awkward about talking about disability, but it really is important that they understand the issues and get honest answers to their questions.

They need to know it’s not weird. Just different.

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!

Cerebral Palsy: An Introduction

Posted in Cerebral Palsy, Disability and kids, Disability Awareness, Disabled Access, Disabled Parent, Does it wet the bed?, Flyinglady Training, and Making a difference

This month is Cerebral Palsy Awareness Month so I’m going to be sharing a number of articles to raise awareness of the condition, what it’s like to live with it and the challenges that it presents.  Later this month, I’ll also be sharing advice for parents who have a child with CP and maybe some of my favourite bits from my memoir about living with the condition – “Does it wet the bed?”

What is Cerebral Palsy (CP)?

Cerebral palsy is a general term for a number of neurological conditions which affect movement and co-ordination.

Cerebral Palsy is caused by problems in the parts of the brain which is responsible for controlling muscles.  The brain becomes damaged either before, during or just after birth, or sometimes, during early childhood.

What are the three main types of CP?

Ataxiaa lack of muscle control when performing voluntary movements.  (National Institute of Health, 2011)

Spasticity Causes stiff or tight muscles and exaggerated reflexes.

DyskineticCharacterised by fluctuation in muscle tone which is either too loose or too tight.

What are the causes of CP?

  • An infection caught by the mother during pregnancy;
  • A lack of oxygen;
  • A difficult or premature birth;
  • Bleeding in the baby’s brain;
  • Changes in the genes that affect the brain’s development.

 

There will be lots more information coming over the next month, but if you’re a business who would like free staff training on Cerebral Palsy, please Contact Flyinglady to book your session.

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.

Now proud Trustee of Cerebral Palsy Sport

Posted in Accessibility, Cerebral Palsy, Disability and kids, Disability Awareness, Media, and Personal

At my book launch back in September, one of my guests told me about a charity which was looking for new trustees – Cerebral Palsy Sport.  I wasn’t sure though.  I’ve never been into sport and I wasn’t sure if I’d have the time to commit to the charity.

Nonetheless, I decided to take a look at the CP Sport website and I have to say, I was interested. The main focus of the organisation is support people with Cerebral Palsy to reach their sporting potential and to improve their quality of life through sport, physical activity and active recreation.  Having worked in a charity for seven years previously, I felt I’d have something to offer them, even if I wasn’t especially sporty!   After a phone call with the CEO, I was hooked and decided to put in an application.

After a very friendly and welcoming interview, I am proud to say that I’ve been appointed on to the board and am looking forward to the new challenges which lie ahead. My first being to support the Charity with its “Get. Set. Raise” Appeal this March – which is also Cerebral Palsy Awareness Month.

The aim of the appeal is to raise £10,000 and there’s 3 main ways that people can get involved:

  • “Do your bit in your sports kit”  – go to work or school in your sports kit and make a donation;
  • Organise a sports themed event – bake sale, sports quiz or a mini-Olympics;
  • Take on a personal challenge – the choice is yours!!

 

I’m proud to be apart of this brilliant charity and would urge you to get involved too!

New writing projects – feedback very welcome!

Posted in Accessibility, Cerebral Palsy, Disability and kids, Disability Awareness, Disabled Parent, Does it wet the bed?, Flyinglady Training, Making a difference, and My writing

This time last year, my new year’s resolution was to get my memoir, “Does it wet the bed?”, published. It was an ambitious goal as the manuscript was barely finished. But with lots of hard work and determination,  I fulfilled my resolution . . . for once!

This year, I have two writing projects which I want to pursue, though I am not going to promise that either will be finished, as I have other work projects in mind.

Firstly, I plan to write a “Disability Etiquette Guide”, to help people gain a better understanding of the issues surrounding disability. I know from experience, lots of people find disability awkward; they don’t know how to approach disabled people and worry about doing or saying the “wrong” thing.  The aim of the guide will be to put people’s minds are rest and to honesty answer the questions that they have.  The guide will cover communicating with disabled people, how and when to offer assistance, the correct language as well as the language to avoid and best practice in a number of situations.

This is my basic plan for the book but I’d really like suggestions from you as to what you would like to see included.  If you have a few minutes and would like to help me, please consider the following questions and contact me with your thoughts:

  • What would you most like to know about disability?
  • What concerns you about interacting with disabled people?
  • What do you think are the common misconceptions about disabled people?

 

I’d really love to hear your thoughts and will do my best to cover all the points I receive.

Secondly, I plan to start a Children’s Book to help teachers and parents to explain disability.  I recently spoke to a mum who was unsure about how to answer her son’s questions about me – she wanted to give him the answers he needed but was worried about offending me. I hope I was able to offer her some reassurance as I explained the best things to say and it cemented my desire to write a book which will help parents to answer those tricky questions with confidence. I haven’t quite decided on the format or style, but if you’re a parent and have any thoughts, please get in touch.

With other training projects and my new role as Trustee of CP Sport, 2016 is set to be a very busy year

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.

“Don’t take my baby” – Disabled Parents under Scrutiny

Posted in Cerebral Palsy, Disability Aids, Disability and kids, Disabled Parent, Family, Motherhood, and Personal

I recently sat down to watch, “Don’t take my baby”, a factual drama which tells of a disabled couple’s fight to keep their newborn baby daughter.  It’s a subject close to my heart as a disabled parent myself.

The mother had a physical, life-limiting disability whilst the father was partially sighted and his condition was expected to deteriorate.  As soon as their daughter was born, social services began accessing their capabilities as parents and their every move was scrutinised.  Rather than being supported in their new role as parents, they were automatically assumed incapable and put under the enormous pressure of having to proof that they could look after their little girl. Any parent, disabled or not, would struggle to cope whilst their every move was being observed and their every little mistake noted down.

After four months of cruelling assessment and observation, the couple were eventually deemed capable parents and they were allowed to keep their little one.  The programme brought me back to the early days of my pregnancy, when I used to fret that I could be deemed an unsuitable parent and that “someone” might try and take my baby away from me.

I remember voicing my concerns to my midwife during my first appointment.  Even though I had a supportive family and an able bodied husband, I worried that my disability would raise concerns.  My midwife assured me that nobody would be taking my baby from me and that everything possible would be done to enable me to look after my baby.  I felt reassured and I was confident that once my baby was born, I’d find my own ways of caring for him and that my disability wouldn’t prevent me from being a good mum.

Although I had a lot of support during my pregnancy and special arrangements were made for the birth, this is where the support stopped.  My husband Dean and I went home with Jack and as a family, we found the best and safest ways for me to care for Jack.  It wasn’t easy to begin with but Dean took time out from work to be with me so that I could gradually build my confidence in doing things for Jack.

Nobody offered us any help or an assessment for things which may make life easier. It was just assumed that we were OK and although this was true, I am left wondering who makes the decisions about who should be assessed and who is left to get on with it.

I am grateful that nobody thought it necessary to interfere; my baby is now 2 years old so I think I’ve proved that I am very capable of being a mum.  But I am also saddened and angry that other disabled people are being presumed incapable just because they have a disability and are being put under such intense scrutiny.

Disabled people have just as much right as anybody else to become parents.  As a society, we should be providing as much support as possible and enabling disabled people to fulfil their potential; not automatically and naively judging them based on nothing more than assumptions.

Disability Awareness for Children

Posted in Cerebral Palsy, Disability and kids, Disability Awareness, Does it wet the bed?, Equality & Diversity, Making a difference, and Personal

Last week, I went to a primary school to deliver my Disability Awareness for Kids workshops. The children were taking part in a Disability Awareness week but I was apprehensive about their reaction to me; a lady in a wheelchair who didn’t speak especially clearly. I realised that talking to a group of children was much more nerve wracking than a room full of adults.

But I needn’t have worried at all. The children were very receptive and I could tell from their reaction that they were understanding me. I explained all about my own disability, Cerebral Palsy, and then talked generally about other disabilities. I really wanted the kids to understand that disability isn’t bad – it’s actually a positive thing that we’re all different, disability or not.

It’s important that children are encouraged to ask questions and have them answered as honestly as possible. I expected questions like, “How fast does your wheelchair go?” or “What’s it like to be in a wheelchair?”   But I was blown away by some of the thoughtful, sensitive questions that some of the kids asked.

“Do you like being so independent?”, came one. I was glad that the children realised that being in a wheelchair wasn’t limiting me in any way. One question puzzled me to begin with, “Do you intend to make your own community?” I wasn’t sure what the pupil meant at first but with a little cajoling and input from his teacher, I realised what he meant. I explained to him that part of Flyinglady’s aim is to help other disabled people to achieve as much as I have and that I would be working on this aspect of my business in the future.

The children kept the questions coming and always seemed content with my straight forward, honest answers. They were especially surprised to hear that I have a little boy of my own and am releasing my own book, “Does it wet the bed?”, shortly. I left each classroom with clapping and a chorus of “thank-you” ringing in my ears. It’s always good to know that I’ve made a difference.

From September 2015, the Disability Awareness for Kids sessions will be available for free to schools in the Birmingham area. To book your session, please Contact Flyinglady.

 

“Mum, why is that lady in a wheelchair?”

Posted in Disability and kids, Disability Awareness, Disabled Parent, Equality & Diversity, Flyinglady Training, Making a difference, and Uncategorised

“Mum, why is that lady in a wheelchair?”

It’s a question I’ve overheard being asked by innocent kids hundreds of times.  The child looks quite weary of me and I pretend not to be listening as Mum quietly explains I have something ‘wrong’ with my legs.  Or that my legs don’t ‘work’ properly.  Mum is a little embarrassed whilst their little one remains unsatisfied.  These hushed conversations always make me smile.  None of the answers given offend me and I understand Mum’s embarrassment but I sympathise with the child’s curiosity.

As a child, I experienced bullying at school on a number of occasions.  Nothing too serious but it was bullying all the same.  At the time, it hurt although I tried to rise above it.  As an adult, it’s easier to understand why these other kids picked on me.  They simply didn’t understand why I was different, nobody had explained disability to them.   For unless children grow up with a disabled sibling or relative, it can be difficult for them to understand why someone is disabled and how they should react to disability.

And it’s these experiences that have inspired me to develop my Disability Awareness for Children Sessions.   Equality and Diversity are now vital issues in every workplace and it’s important that children, particularly teenagers, are given the opportunity to explore these issues before they enter into employment.  The sessions provide participants with an opportunity to ask me any questions they have and dispel some of the myths which still surround disabled people.

I recently provided one such session for a group of teenagers who were hosting a sporting  event for a number of people, many of whom had disabilities.  The group weren’t particularly fond of classroom sessions, much preferring to be outside so I was a little apprenhensive about holding their attention.  I need not have worried.  The group were very attentive and I was later told, it was the most engaged they had been in a classroom for a long time!

Their tutor said:  “Aideen delivered a fantastic session that focused very much on an interactive session.  The feedback was fantastic…and they learnt alot about working with others with disabilities.”

To find out more, please visit Flyinglady