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Category archive for: Making a difference

Why I love being a trustee of Cerebral Palsy Sport

Posted in Cerebral Palsy, Disability Awareness, Disabled Access, Does it wet the bed?, Fighting for Change, Making a difference, My writing, and Personal

At the book launch of my memoir, Does it wet the bed?, someone happened to mention to me a Charity, Cerebral Palsy Sport and how they were looking for new trustees. I almost dismissed the idea; I had never been a sporty person, much to my regret. I wasn’t sure how much I’d have to offer such a charity.

Then I thought back to my time working for another disability charity who focused on helping disabled people into employment.  As an employee, it was sometimes frustrating as I’d have a vision for how I thought the organisation should go but no real authority to influence it’s direction.  When the charity struggled financially and my job was hanging by a thread from month to month, all I could do was do my job and hope funding would come our way – even though I had endless ideas for stabilising the charity and indeed, expanding it.

So I realised it didn’t matter that I didn’t spend my weekends by the side of a pitch – what mattered was I had the drive, the passion and the enthusiasm to make a difference to a charity. I could help other people with Cerebral Palsy to reach their sporting potential and that was what inspired me to apply.

I was thrilled to take up my role as Trustee last January and though it’s a big responsibility, I can honestly say that I’ve loved every moment so far.  I’ve put my current skills to good use and am continually developing my skills and experience, which will only strengthen my CV.  I’ve met some brilliant people and most of all, I hope, I’ve made a difference for the people using our services.  Every day is different, challenging and rewarding – even it is just a simple “thank-you” and a smile.

Yes, the role takes up my time. The usual commitment is 6 Board Meetings per year, plus 4-6 Sub-Committees Meetings per year but if you have this time to give, there’s nowhere better to give it! All your expenses will be paid and you’ll be invited to some brilliant sporting and fundraising events that are family-friendly and lots of fun!

So why not come and join us?!  To apply to be a trustee, please follow this link or you can contact me for a chat if you’d like more information.

I’m just Mummy, despite my disability

Posted in Cerebral Palsy, Disability and kids, Disability Awareness, Disabled Parent, Equality & Diversity, Family, Making a difference, Motherhood, My writing, and Personal

My little boy is now three and a half and he really is the apple of my eye. To Jack, I’ve always been just Mummy.  It doesn’t matter that my speech is a bit funny or that I walk differently to everyone else. My wheelchair is just part of me and Jack doesn’t care about any of it, all he cares about is Mummy’s cuddles!

He’s grown up with my disability and although he’s starting to realise my limitations, they thankfully don’t matter.  I’m his mum and that bond is as you’d expect, as strong as any other mother/son relationship.

I know there may come a day when Jack will ask questions about my disability and I’ve been giving a lot of thought as to how I might answer them.  With honesty and humour, that’s my plan. I want Jack to be able to ask any question he wants and know he’ll get a honest answer.  I don’t want a lack of knowledge to make him fearful of anything in life.

That’s what has inspired the book I’m currently working on. Too many children are not exposed to disability and then when they do come across it, they are unsure what to do. I’ve overheard so many conversations,  where a child is asking mum or dad why I’m in a wheelchair or why I speak like that. The parent’s embarrassment often leads to both a hushed and a rushed response and I think children need and deserve more if they are going to be equipped to manage situations in the future.

As well as raising disability issues within the context of a story, my book will also offer nuggets of advice for teachers and parents, who may understandably struggle to answer those awkward questions. I hope it will enable children and parents to initiate open, honest and fulfilling conversations which help to satisfy children’s curiosity and give them both much needed “disability confidence”.

Watch out for further information, title and release dates!

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.

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.

Support for young disabled people and their families

Posted in Accessibility, Cerebral Palsy, Disability Awareness, Equality & Diversity, and Making a difference

It’s sometimes hard for young disabled people and their families to find the support that they need and even harder to make their voices heard.

SENDIAS is a project in West Berkshire which aims to support young disabled people, up to the age of 25 and their parents/carers.  They want young people and those who care for them to have more of a say in how services for disabled children are shaped and delivered.

The service is free and confidential and advisors can help guide disabled young people through the development of Education Health and Care Plans.

 

For more information, please visit www.westberkssendiass.info

Even if you’re not in West Berkshire, they can help you find support in your area.