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Isn't She Talking Yet? - Times Online - WBLG

November 29, 2007

If you think adult carers have it bad, think again

385x185_241307a I’m not a sentimental person, and quite a lot leaves me disconcertingly dry-eyed, but reading about this year’s Sunday Times Christmas Appeal  – which I only did, belatedly,  this morning – means I am typing this with my eyelashes all clumped together with tears. The appeal this year is on behalf of young carers – children who do work no child should ever have to do, looking after their ill or disabled parents and/or siblings. Some of these children are tiny. None of them have what you or I would understand as a childhood. All of them really, really need help. They are pathetically young, from poor or deprived backgrounds, completely vulnerable, and often hug their grief and loneliness to themselves. Please read Caroline Scott’s absolutely fantastic article, which you can find in full by following the link below, but this is how it starts:

Four o'clock on a Monday evening, and a straggle of small children are trooping into the Carers Cottage, a restored council building on the edge of Howard Park, Kilmarnock. They've come for their weekly activity session, and for a couple of hours they'll play, do arts and crafts, and be given a hot meal, complete with tatties and vegetables ­ something most will not be getting at home. Some are absolutely tiny. Their hands disappear into their coat sleeves, and when they sit down on vinyl-covered benches, their feet barely scrape the floor. Despite the cheery yellow-and-blue decor and the comforting smell of cooking, this place feels starkly municipal. As if they might need reminding, a brightly painted mural above them shrieks: "Young carers just wanna have fun!" They look anxious and unsure of themselves until Jason, the centre's family support worker, wedges himself between two brothers, Sam and Luke. "So what yous all been doing over half term?" he asks. They shuffle about and say nothing. "That bad? No!" But it's a hard question because the answer for many is not much. All of these children have caring responsibilities at home way beyond their years. Their parents are ill or disabled or they've got a sibling with special needs who requires so much care that it impacts on the whole family. Sam and Luke's mum suffers from depression and their dad has multiple health problems, including chronic arthritis. He recently had a stroke, which means the boys and their two older brothers and sister take on a lot of responsibility. The centre managed to send them away for a week's break in a holiday cottage, donated by a local supporter. It was only four miles away, but there was a huge kitchen and chickens to feed, and it was a change for everybody from the chaotic conditions at home. "So, boys, what was the best bit?" Jason asks. Sam, 8, thinks about it. "There were beds with real lights you could turn on and off," he says, looking bemused.


Tonight, PC Fergie Grant has popped in to talk about graffiti and Asbos.

"Och no, they're never too young to start talking about crime," he says. But later concedes that perhaps they are. This group are all 8 to 10, and some of them are living in situations that make them very vulnerable. But when they stare at him with their round, baby faces, I don't think he has the heart to give them his drugs spiel. "What would you do if you saw someone doing something wrong?" he asks instead. "That's right! Tell your mummy." As he talks, Erin, 8, dressed in pink, with the sweetest face, traces a pattern with a finger on her skirt. Her brother, Finn, 10, stares at the floor.


After being cared for at home for months, their mummy died of breast cancer two weeks ago. PC Grant isn't to know, but I know, and my heart breaks for them.


Jane Smith, the centre manager of The Princess Royal Trust East Ayrshire Carers' Centre, began the young carers' group nine years ago with Laura Bennie. Then there were six children. Now four full-time and 10 part-time workers care for 400 children, aged from 5 to 21, at two centres, one here in Kilmarnock and one in Cumnock, 15 miles away, covering an area of 490 square miles. There are activities evenings every night for each age group, a total of 10 groups. Every time I see Jane, Jason, Lorna, who runs Kilmarnock, or Derek, who looks after Cumnock, they're carrying food. All the meals are cooked on the spot ­ soup, mince and potatoes ­ and they always overbuy, so the children who they know won't have much at home can take what's left away with them. Food is a big priority here, for everything it signifies: warmth, nurture, care. After Lorna got married in August, Jane laid on a mock wedding for all the children. Formal invitations were sent out, and Lorna, wearing an Oxfam dress, "married" wee William ­ a 10-year-old who looks after his disabled father ­ in the back garden with tables laid out, so everyone felt part of it. Jane cooked steak pie and mash and made sticky-toffee pudding and a cake. One of her absolute rules is that carers deserve the best. It's her way of caring for them. The children are never out of her mind. It's a standing joke that Jane cannot pass M&S without going in and buying pants. The office has enough pants, socks, T-shirts and jeans to clothe a primary school. And if she sees toothpaste reduced in Sainsbury's, she'll buy a basketful for distribution on respite breaks when children turn up with just the clothes they stand up in.


At Christmas there are parties for each age group, a huge dinner, and all the children and their brothers and sisters get a sack of presents. Parents who are ill often buy something from a catalogue ­ a pair of boots or a toy ­ but end up handing it over beforehand, so a child has nothing to open on the day. Many won't be getting Christmas dinner at home either; there'll be nothing to differentiate it from any other day. Jane tells a story about an eight-year-old girl, Kerry, who, when her mum was ill, regularly heaved her baby sisters up to the Foregate shopping centre in Kilmarnock in a double buggy. Kerry came to the young carers' Christmas party wearing a pair of thin leggings and a Mickey Mouse T-shirt she was very concerned about. It turned out it was her only Christmas present, and when she got home she had to wrap it up again for opening on Christmas Day. One of the few remaining pieces of furniture in the house was a highchair. Half the floorboards had been ripped up and burnt because there was no money for heating. Someone once criticised Jane for giving some children more than others. "Yes I do," she retorts. "I don't apologise for it either."

You'll no doubts have your own thoughts after reading that, but here are two of mine: 1) it is simply extraordinary that saintly and spirited people like Jane Smith and Laura Bernie should do this wonderful and important work and not have enough money to fund it properly; and 2) this is happening up the road, not in some Third World country where you sometimes feel that all the money in the world isn't going to help the problem, because the problem is of such epidemic proportions (which isn't to say you shouldn't donate money to Darfur as well, obviously). These are, in a  real sense, our children, and it is our collective responsibility to help them. You can do so here, and read Caroline Scott's brilliant article in full too.  I know newspapers stress everyone out around Christmas time by constantly demanding they put their hand in their pocket, and I know how  easy it is to think 'Oh dear, how sad' and turn the page.  But really, I defy anyone to read the Sunday Times article and not set up a standing order. If you need to be persuaded further, you can read 11-year-old  Lauren Mallins talking about what happened when the Sunday Times magazine ran her Life In The Day story earlier this year, which resulted in a flood of donations from our kind readers, here.  Lauren is just one child. There are thousands of others, going about their broken lives unheard, and uncomplaining.

You can watch videos of Christian Lunn (pictured with his mum above, left) and Lauren Mallins (pictured, right) talking about their lives by clicking on this link.

Once you've made your donation, you can read about how your money will be spent here. Thank you.


The Princess Royal Trust for Carers www.carers.org - and young carers, www.youngcarers.net




 

Posted by India Knight on November 29, 2007 at 11:51 AM in Charities | Permalink | Comments (7) | TrackBack (0) | Email this post

August 16, 2007

Robert Plant's guitar up for grabs

Dscf0044So, this is pretty cool. I'm a trustee of Harrison's Heart Foundation, which I've written about before here.

We're having a fund-raising dinner in London on October the 8th, at which there will be an auction. Rock god and nice person Robert Plant, formerly of Led Zeppelin, has very kindly donated one of his spare acoustic guitars - exactly like the one he uses -- and has even more kindly signed it for us. (Pictured doing so hanging out with Nell when she didn't have much hair but was quite good at tuning the strings). Tickets for the event are extremely limited - contact the website (HHF, not this one) for details. Otherwise, you can email me with a bid. Please put 'auction' in the subject line, otherwise my spam filter will do its thing. The address to use is india.knight@sunday-times.co.uk.

Dscf0054

Posted by India Knight on August 16, 2007 at 11:09 AM in Charities | Permalink | Comments (2) | TrackBack (0) | Email this post

June 05, 2007

If you could change one thing....

The Every Disabled Child Matters (EDCM) campaign is currently working on a new briefing called 'If I could change one thing'. Over to them:

"This briefing will allow parents and children and young people to tell MPs, Government Ministers and key decision makers directly what they think needs to change.

So - we need to know from all our parent supporters and young supporters - What would YOU change for disabled children and families?

We are keen to capture as many views as possible from all our different supporters and particularly want to get views from as many children and young people as possible. So please do ask your children, families and young people that you know to let us know what THEY would like to change. We are very keen to receive comments or views from all disabled children and young people in any format - including pictures, photos or drawings.

Do you work with children, young people or parents? If so we would be delighted if you could let them know about 'If I could change one thing...' and ask them to feed back their views to us directly. Or perhaps you are aware of existing projects or research that have gathered similar information from parents and children? If so we would love to hear from you and feed through these views into our "If I could change one thing..." publications where appropriate.

The deadline for responses is Friday 22nd June 2007. Please send your answers to info@edcm.org.uk or you can post your answers to EDCM, c/o Council for Disabled Children, 8 Wakley Street, London, EC1V 7QE.

More information about the 'If I could change one thing...' project is at:

http://www.edcm.org.uk/onething (for children and young people)

http://www.edcm.org.uk/parents_carers (for parents and carers)"

Posted by India Knight on June 05, 2007 at 10:50 AM in Charities | Permalink | Comments (1) | TrackBack (0) | Email this post

February 20, 2007

SIDS charity walk

Fsidlogo Someone I know from my other blog has founded a charity in support of research into cot death, following the death of a little girl called Maude, who died in her sleep during her afternoon nap seven weeks ago. She was two years old. On May 12th, children and parents are doing sponsored walks all over the country in her memory and to raise funds for the Foundation for the Study of Infant Deaths. Full details of how to participate, make a donation, etc on the website, A Mile For Maude.

Posted by India Knight on February 20, 2007 at 11:38 AM in Charities | Permalink | Comments (1) | TrackBack (0) | Email this post

January 18, 2007

Hooray!

The Daily Mail/Royal Bank of Scotland charity giveaway winners are announced in this morning's paper. Ninety charities get £10,000 each, but the utterly wonderful Unique, for parents of children with rare chromosomal abnormalities, gets a big fat £100,000. I am ridiculously pleased about this, not least (selfishly)  because Unique was such a godsend when Nell first was diagnosed.

The winning charity was voted for by the paper's readers - and, I'm fairly sure, by more than a few readers of this blog. Result! And if you're one of them, thank you!

Posted by India Knight on January 18, 2007 at 07:50 AM in Charities | Permalink | Comments (1) | TrackBack (0) | Email this post

December 21, 2006

Quick, go to the Daily Mail website!

Counter-intuitive (and then some), I know, but they're doing this really great charity thing, whereby they've teamed up with the Royal Bank of Scotland to donate £100,000 to one of several shortlisted charities. You go to the site, which is right here, to vote for the charity that you think is most deserving.

Obviously this is a bit tricky, since charities are by definition deserving. But one of the shortlisted ones is Unique, a brilliant support group for parents of children with rare chromosmal abnormalities. Unique does fantastic work. Also  a) chromosomal abnormalities are on the rise, and b) Unique could do with the publicity this Mail thing would bring, since they're small and little known.  Having said that, a girlfriend who's involved with the admirable Treehouse, an educational charity for children with autism that's also on the Mail's shortlist, has just emailed me urging me to vote for them... maybe you can vote twice. But vote you must, whoever for - it only involves a mouse-click and an email.

Posted by India Knight on December 21, 2006 at 03:28 PM in Charities | Permalink | Comments (0) | TrackBack (0) | Email this post

November 10, 2006

Harrison's Heart Foundation

Hhf3 is a wonderful charity, of which I am a Trustee. The little boy in the picture is Harrison Tull, in whose memory his parents, Richard and Helen, started the foundation. Helen's written a little bit about it below.

I know that - obviously -  all charities are worth supporting, but I personally like to involve myself with smaller, more specific ones, on the basis that enormous multi-national charities - ones that are constantly in the public eye - get their fair share of attention (though, sadly, that isn't necessarily enough). If you enjoy this blog and have some spare pennies, please make an online donation to Harrison's, which is doing really good work via the Royal Brompton Hospital in London, a place that is very close to my, er, heart, given that they saved my daughter's life, and will do so again. I really love the Brompton, and everyone in it, but that's another story. Here is Helen:

"There is an old adage that says, “While we try to teach our children about life, our children teach us what life is all about.” My son Harrison has taught me more about life and living than I ever thought possible.  And although he was only with us for only 15 months, his laugh, his courage, his unwavering spirit, his determination in the face of insurmountable odds have been a blessing and gift to me and his father, Richard.

Harrison was born five weeks premature with an improperly formed oesophagus and a heart murmur.  Doctors quickly operated to fix these problems, giving us the hope that he would survive. Like most of us, we assumed that in the 21st century babies that get sick will be cured. A few months later Harrison went into heart failure and received emergency open heart surgery. It was discovered that he had Pulmonary Vein Stenosis – a usually fatal condition that caused the veins in his tiny heart to narrow, rendering them unable to deliver enough oxygen. Despite surviving 8 surgeries in 9 months, the Stenosis returned and Harrison died in his father’s arms shortly after his first birthday.

The fact is that almost 1% of all babies are born with some sort of heart defect but despite this virtually no research is being done to investigate their causes. Richard and I decided to do something about this and together with family members, one of Harrison’s doctors and some other parents whose children have survived heart problems, we created Harrison’s Heart Foundation. Our mission is to raise awareness and fund research that will advance methods of treatment of these deadly conditions. At present we are funding a unique research initiative at the Royal Brompton Hospital that we believe is the first step towards this goal.

Although our son died, we believe that our efforts can make a difference and touch the lives of parents and children worlds away, and give them hope and life where they once had none. If you would like to find out more about our foundation or to help us please contact me by email at harrisonsheart@optonline.net or visit our website here."

Posted by India Knight on November 10, 2006 at 10:17 AM in Charities | Permalink | Comments (1) | TrackBack (0) | Email this post

India Knight


  • India Knight was born in 1965. She lives in London with her three children, writes a weekly column for The Sunday Times and has written two fiction books, My life on a plate and Don't you want me? and a non-fiction book, The Shops. After writing an article in The Sunday Times about her daughter's special needs (Nell has a cardiac condition called truncus arteriosus, and DiGeorge Syndrome, aka 22q11 deletion) she was so inundated with e-mails that she has launched this weblog as a forum for parents in a similar position to keep in touch, compare notes and help each other. You can read about India and her daughter here.

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