Speaking for those who have no voice!

DREAMS – we all have them…

There are even charities which exist to grant dreams to children and young adults, but I discovered something yesterday which rocked my faith in charities and brought me down to earth with a big bump! It also propelled me to write this post.

First I want you to consider something.  If you have ever had children, think back to the time before they were verbal. Do you remember how you learnt to understand what they needed/wanted? How you, as a parent, were as one with your non-verbal child. Did you ever have people saying your child was hungry, when in fact you knew he/she was simply over-stimulated and needed a nap? No-one understands the needs of a child better than a parent.

Perhaps you have a dog? Dogs are non-verbal, but as a dog owner you learn to communicate with them in a non-verbal way, understanding their needs/wants.

Some children who are born healthy can develop illnesses/diseases which have a profound effect on them.  They may have a normal, happy childhood and then ‘BOOM’ everything changes.  Suddenly they are no longer able to do the things they once did.  Some are robbed of any chance of a ‘normal’ life and exist in a world where they can no longer use their voice to communicate.  Sadly, some children are born with a disease which means they will never be able to talk.

Yesterday I read a Facebook post written by the father of a non-verbal 17 year old, who has a life-limiting disorder and who is on a palliative care pathway.  This father knows that his son loves Disney characters and that a visit to Disneyland would be a dream come true for his son.  His son has not voiced this dream, of course… he has no voice to do so!  The family decided that they would take their son to Disneyland and that they would fund the trip themselves, with the help of a Crowdfunding platform.  Donations are coming in, insurance , accommodation, car hire and flights are sorted.  The family just needs a bit of help with tickets – time is running out.  So the father approached a well-known ‘Wish’ charity to ask for support with the tickets, only to be told that his son needs to express the wish himself! WHAT??? They said what?  They had been told that he can’t communicate and his inability to do so means he can’t be granted a wish! How uncharitable is that?  Another charity which grants wishes ONLY does so to children suffering from life-threatening cancers! WHAT??? I have spent years supporting charities; donating, fundraising, raising awareness, as well as working for some on a consultancy basis and whilst I understand that there has to be set criteria, insisting that a child verbalises their dream is nothing short – in my opinion – of discriminatory.  For a charity only to grant ‘dreams’ to children with cancer is beyond sad.  Mitochondrial disease kills more children than childhood cancer.  It comes in many forms – all life-limiting, some terminal.  No Voices

I spent a few hours yesterday looking at the ‘criteria’ in the small print of several ‘wish giving’ charities, whilst wondering what donors would think of these restrictive policies.  What do YOU think?  If you’re as upset as I am, please share this post and help raise awareness of this poor practice. 

If you would like to support this family, here is Kieran’s GoFundMe page 

Kieran’s father, Paul Preston, created The Children’s Mitochondrial Disease Network (CMDM) in 1998 to support other families, raise awareness and campaign for improved treatment and management of mitochondrial disorders, after the death of his own daughter, Kirsten, in 1992.  She was just 8 weeks old.  Last year, Kirsten and Kieran’s sister, Stacey, died from mitochondrial disease.  She was just 20. She was Paul’s inspiration for twenty years!  This article will tell you more.

I truly believe that Paul Preston and his wife understand their son and know that a visit to Disney would be very special to him. Would it be his verbalised dream, if he could speak? If only he could tell us… because it’s the only way he’ll get support from some of the ‘dream’ charities.

If you would like to know whether Kieran gets to go to Disneyland, please follow Kieran’s Mitochondrial Journey and Wishes Facebook page.

Kieran

 

 

 

Keeping our ‘Young Drivers’ safe on the roads.

We hear statistics every day – some pass us by, but others hit home.  One statistic which resonated with me was that “one in four 18-24 year olds (23%) crash within two years of passing their driving test.” [Young drivers at risk, The AA, 2012]

I have three children, two of whom are driving and the third was about to order a provisional licence when I heard that statistic. In addition, I was aware that there had been a number of fatalities in Gloucestershire, involving young drivers.  What could I do to help my daughter avoid being one of the 23%?

I consulted my friend ‘google’, who suggested The Under 17 Car Club’s Pathfinder Course This five day course takes place during school holidays at Throckmorton, Worcestershire.   Not exactly on my doorstep, but certainly within travelling distance. The course is delivered in conjunction with the Gloucestershire Police and Crime Commissioners Office and is operated on a ‘not-for-profit’ basis.  It costs £170 and it is possible for low income families to apply for a bursary.

I eagerly read-up on the course, to see ‘how’ it could help young people with their driving skills and was surprised to find that they would spend over half their time on the course actually driving! The programme covers:-

Essential Car Control

Speed Awareness

Parking and Manoeuvring

Understanding Risk

Highway Code

Observation

Peer pressure

Brake and Avoid

The downside, or at least so I thought when reading about the course, was that I would have to attend with my daughter, thereby spending the whole week at Throckmorton! I’m self-employed, so that meant booking a week out of my diary (no-income) and overcoming my nerves about being in a car with her, as she learnt to drive! But if it meant she would ultimately become a better driver, it would be worth the sacrifice…… wouldn’t it?

My main concern was that she would turn 17 on the weekend before the course started and the literature states the course is open to 15 and 16 year olds, but a quick call to John Beckford, one of the masterminds behind the course, reassured me that she would be eligible to attend. So I booked a place for her.

We were both nervous and excited on the drive to Throckmorton. We had packed a delicious lunch (the course takes place on a disused airfield) and I drove my son’s Picanto, rather than Blossom – my pink Nissan Micra C&C, on the pretext that is was a smaller car and easier to drive. The truth was that I wasn’t at all sure I could trust my daughter to drive Blossom, but please don’t tell her!

Arriving at the airfield, we saw 100s and 100s of cones which we discovered marked the various course routes. We headed to a large marquee to sign-in and waited for the plenary session to begin.  Looking around, I noticed the other parents appeared as nervous as I felt.   Many were accompanied by sleepy-headed teenagers – some of whom appeared quite disinterested in the proceedings. That all changed when we headed for our cars and the youngsters finally had the opportunity to sit behind the wheel, whilst their nervous parents sat next to them in the passenger seats. We had been instructed to drive slowly around the predetermined course. Some were able to drive away immediately, but we were slower due to the fact that I first had to explain the pedals to my daughter…. and the gears…. and everything else! I felt negligent for not having done any prep with her.  After a few false starts, we were off.  I noticed one young lad becoming overly confident and driving too quickly, but in an instant one of the Instructors flagged him down and had a chat with him.  That made us both a lot more confident.

Some Instructors observed, whilst others took it in turns to join the drivers in their cars and give instruction and advice, whilst assessing the driver’s ability. The morning flew past and soon we were back in the marquee for lunch, a Highway Code test and another plenary session, before going back out on the course for further practice.

It was fascinating to see the young drivers becoming more and more engaged with the programme, eagerly completing their theory tests and listening intently to the advice and instruction given during the plenary sessions.  I have to say that I learnt a lot during my week at Throckmorton.  I particularly enjoyed the demonstration on braking distances, where the Instructors drove a variety of cars at different speeds and then applied the brakes.  A marker was placed at the point the vehicles stopped, so that everyone could see the distance travelled before vehicles came to a standstill. The ‘brake and avoid’ exercise will, I am sure, be invaluable in the quest to help young drivers become safer drivers.  Peer pressure was addressed and valuable advice given on how to deal with it.  The ‘beer goggles’ illustrated the effect of alcohol and/or drugs on performance.

Towards the end of the week, parents were encouraged to ‘share cars’, providing the students with an opportunity to drive a variety of vehicles.   This probably sounds horrific to anyone who hasn’t attended a Pathfinder Course, but you may find it surprising to read that we were all happy to do so.  My biggest surprise of the week was seeing my daughter driving a small truck, calmly and confidently.

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On completion of the Pathfinder Course the students said their “goodbyes,” whilst proudly clutching their certificates of achievement.  Grateful parents thanked the Instructors, knowing that the skills and knowledge passed to their teenagers would help to keep them safe on the roads.  Learning to drive is not something that can be rushed; I have to say that I am not impressed when I hear that someone passed their driving test within days or weeks of their 17th birthday. The reality is that once they have passed their driving test, they will be in sole control of a dangerous weapon and we need to ensure that they realise the implications of their actions.  I would urge anyone with eligible teenagers to sign up for the Pathfinder Course, prior to taking any driving lessons.  They will learn essential driving skills, not covered by driving lessons, together with an understanding of risk awareness and road safety.  As Martin Surl, Police and Crime Commissioner for Gloucestershire, says “Every road accident is a potential life changing or life threatening incident and we have to do all we can to prevent them from happening.  Pathfinder is designed to address this issue by making young drivers more aware of the dangers they’ll face when they get behind a wheel unaccompanied.  Things they learn now could keep them out of danger later.  I warmly recommend the Pathfinder Project to parents.”

When I last checked, there were a few places still available on the October 2015 Course (26th to 30th).

The provisional dates for 2016 are 4th to 8th April, 25th to 29th July and 24th to 28th October.  Please remember places are limited, so I would urge anyone considering the course to act now.  More details can be found on the Under 17 Driver website.