Friday, 26 April 2013

What Does Good Care Look Like?



The Thoughts of Adsthepoet

I am 13 years old and I have spent more than half my life in hospital.
I've seen the best and the worst of the NHS and stayed in five regional Children's Hospitals; Southampton General; Edinburgh Children's; Yorkhill (Glasgow); GOSH and Leeds General. The care I have received in all these hospitals but one has been outstanding.  In that one, some of the care has been wonderful but some has sadly been awful. The bad care has made me ill, sad and very very scared.  I've told mum I never want to go back to that hospital again.  Last time I was there they discharged me saying I was well, but I was so poorly that I been in the great hospital where I am now for almost a month and doctors thought I was so ill I may not survive. Thankfully, I am now getting better.

I think everybody should have good care, so to help, I thought I would let you know what, from my experience I think makes good care.

In the good hospitals:-
1) Staff talk to me and involve me in decisions about my care. They ask me about what I want and don't want;
2) Staff talk to mum and dad and ask them about me;
3) Staff talk to each other and pass on important information about me;
4) If staff don't know something they are not afraid to say and ask someone who does know, sometimes that might even be me or mum and dad;
5) Staff treat me as an individual and recognise the things I can do, they don't jump to negative stereotypes and prejudices about me, because I am physically impaired; 
6) Staff have time for me, they are friendly and chatty and make me feel as if I matter;
7) Staff are friendly and chatty to mum and dad, they work with them, they treat us all as if we matter;
8)I'm never left alone when I'm seriously ill and never in a room with the door closed so staff can't see me;
9) When I'm really ill doctors come quick and do everything necessary to make me better, I'm not left critically ill for hours without care;
10)  I always feel that I am getting the best care possible, I'm never made to feel like a second class citizen for whom it doesn't matter if I live or die.

In the bad hospital they do the opposite and worse, that is why I never want to go there again, but want to send a big THANK YOU to all the staff at that hospital who have given me good care and to all the staff at the other hospitals- You are the best!

Adam Bojelian
26th April, 2013

Wednesday, 20 March 2013

World Cup Winner



I wrote this poem for my home study English course, I had to imagine I was scoring the winning goal in football match, hope you like it:-

World Cup Winner

With aching legs and a heart full of pride,
The noise of the crowd left nowhere to hide.
The clock was ticking towards the end of the game,
If it stayed a draw, it would be a shame.
In my nation’s shirt, in the heart  of  Brazil
Scoring the winning goal would be such a thrill.
In the heat of Rio, I dive for the ball,
But it hits the post, I feel such a fool!
I rally my strength and run up the pitch,
I use my right foot, avoiding a hitch.
The ball floats through the air and over the line,
The feeling inside of me is simply divine.
The ref blows the whistle, the crowd shout and scream,
I’ve scored the winner, I’m living the dream!

(c) Adam Bojelian 2013


Wednesday, 6 February 2013

Jamie and the Ceeiabs - A Modern Myth


Here is the short story I wrote for my English course, it took me quite a long time and a lot of effort to write it, so I hope you enjoy it:-



Jamie was riding his bike through the park.  Although it was June and the weekend before his school was due to break up for the summer, the weather was cold.  Jamie was wearing his wellingtons, his jeans and a red and green striped jumper

Jamie rode his bike through the park, his red hair blowing in the wind.  As he peddled, Jamie suddenly noticed he was being chased by a small Jack Russell dog. Jamie increased his speed to try and get away from the dog.

Suddenly Jamie skidded, he veered off the path directly into the pond.  As Jamie plunged in, something very strange happened, it was dry under the water.  Jamie fell down to the earth.  It was very dark, just enough light to see.  Jamie landed on the ground gently. He looked up and realised he was surrounded by some strange looking people.

The people around him were called Ceeiabs (pronounced Chi-abs), although Jamie did not know this.  They were the size of humans; their heads very similar to humans, but everyone was wearing a beanie hat, the hats were all different colours.  Everyone of the Ceeiabs had seven arms and one leg with two wheels at the bottom.

There must have been about fifty Ceeiabs surrounding Jamie.  They were all taller than him.  Jamie felt scared, he did not know what was going to happen.  He had lost his bike and all the Ceeiabs were staring at him, but not saying anything or making any noise.  That made Jamie even more scared. Some of the Ceeiabs started playing with Jamie’s hair.

Just as Jamie was beginning to panic, one Ceeiab came towards him from out of the crowd. He was exactly the same as the others, except he was not wearing a beanie hat, he was bald.  The bald Ceeiab waved to the others to go away, but they just stood and stared at Jamie. The Ceeiab then pushed Jamie sideways through the crowd, Jamie was terrified. The Ceeiab used his seven arms like swords to make a path through the crowd. The other Ceeiabs were so surprised they did not fight back.

Once through the crowd Jamie began to run, he could go much faster than the Ceeiabs on their small wheels.  But when Jamie glanced back, he saw the friendly Ceeiab being chased by all of the other Ceeiabs.  Jamie didn’t know what to do.  Should he run off by himself or go back to help his new friend? Jamie knew the right thing to do was to go back to help.  He ran back to his friend and dragged him by one of his arms, pulling him along behind him.  Together they escaped from the other Ceeiabs. 

Once Jamie thought the unfriendly Ceeiabs were far enough away he stopped running.  He was out of breath. Jamie had been running with the Ceeiab for about five minutes and they had travelled almost a kilometre. 

Just as he was feeling more comfortable, in front of him Jamie noticed another group of Ceeiabs.  At first he felt scared again, but they waved to him and his new friend, with all their seven arms.  They looked really happy and friendly. His friend waved back with his seven arms and also looked really happy.  It is clear to Jamie they knew each other. Jamie pulled his friend over to the group.  The Ceeiabs all hugged each other.  Jamie’s friend introduced Jamie and all the other Ceeiabs started hugging him.  Jamie was delighted he has got his friend who had helped him, safely home. He then wondered how he would get safely home himself and felt scared again.

Through the group of Ceeiabs a small Ceeiab, about Jamie’s size appeared pushing Jamie’s bike.  Jamie noticed that the handle bars were a bit bent, but otherwise it looked fine.  The Ceeiabs encouraged Jamie to get onto the bike. His new friend, the bald Ceeiab also handed him a navy blue beanie hat, which Jamie put on his head.  Jamie climbed on to his bike and peddled hard. As he did he felt the bike rising up out of what would have been the pond.  Jamie turned and waved to the Ceeiabs, they all waved back using all their arms. They all looked happy.  As he peddled Jamie got higher and higher, until he found himself out of the pond and back on the path where he had been chased by the wee dog.  Jamie was very happy to be back.  He was surprised by his adventure, he wondered if he had imagined it, but he could feel the navy blue beanie hat on his head, so he knew it had been true.

(c) Adam Bojelian 2013


Friday, 1 February 2013

Caledonia Dreaming

My school asked me to write a poem about Scotland for Burns Night (25th January) and here it is:-




Caledonia Dreaming

What is Scotland? Tourist say
Saltire, tartan and Hogmanay.

But what does Scotland mean to me?
Mountains, handsome cities and roaring sea.

Without Scots inventors where would we be?
No telephones, no penicillin and no T.V.

Our footballers may not bring much joy,
But my sporting heroes are Murray & Chris Hoy.

Edinburgh's Book Festival is my favourite place to go,
I love meeting great authors, Duffy and Morpurgo.

I love my friends at Forthview school,
Making me laugh, acting the fool.

But best is mum and dad, my cousins too, and
Charlie Dog sniffing out at bone to chew.

Scotland is not a country of fried Mars Bars.
It is a great nation, full of shining stars!

(c) Adam Bojelian 2013

Thursday, 29 November 2012

A Christmas Dream Come True....





Monday 3rd December will be a very exciting day for me, as it is the day Christmas Gibbons music and vocals by LA musician and composer Tom Harrison, words by, yes incredible as it seems, me, Adam Bojelian is launched on iTunes to raise money for Children's Hospice Association Scotland (CHAS)


You can preview it here but do please tell the world to download it from iTunes from Monday, as 50p of every download goes to CHAS and help children who like me, live with very serious, life threatening and life limiting health problems.

Talking of which I'm in hospital at the moment, so I've asked mum to tell you the Christmas Gibbons story:-



Dreams Do Come True - The story of Christmas Gibbons, as told by Adam's mum Zoe:-

With a Brit Writer’s Award; a gold Blue Peter badge; a Young Scotland “Rising Star Award” and this year’s Young Scot “Arts” award, all to his name,  as well as letters of congratulations from the Queen, the UK Prime Minister and Scotland's First Minister, I didn’t think my 12 year old son Adam could surpass his amazing achievements.  But from Monday he will also be able to add lyricist to his precocious cv, when Christmas Gibbons, the wonderful poem Adam wrote in 2010, is launched on iTunes with music and vocals by LA based film and T.V. musician and composer Tom Harrison and animation by Jess Connell and Nikki Godley 

As those of you who follow Adam’s poetry blog and his twitter feed will know, Adam’s creative achievements are all the more remarkable in view of the fact Adam lives with very complex and serious health problems and severe physical impairment. Adam is currently in hospital.  He has been in four different hospitals in the UK in the last few months.  Indeed he has spent more of his life in hospital than out,  including more than half his Christmases.  Without question, a difficult life for a child, but at the same time the only life Adam has ever known and one our whole family have always been determined to make as happy and fulfilling as the restrictions of Adam’s health allow.

So how did a 12 year old living with more far more challenges than most, come to be the lyricist of a potential Christmas hit?  The story begins when Adam was a baby.  After a difficult start, Adam spent most of the first 18 months of his life on ward G1 at Southampton General Hospital in Hampshire. Ward G1 was then and from Adam's brief revisit this summer, it appears still to be, a very special place.  It is a hospital ward you definitely want to find yourself in if you are unlucky enough to have a baby with serious health problems.

The doctors and nurses were kind, compassionate, supportive, and informative, as I said recently elsewhere of another hospital, wrapping our whole family in a huge blanket of support and yes,  I would even say love.  It was also a place of laugher and fun.  To this day, I believe the care, support and most importantly the way the staff treated Adam as a much valued child and recognised, even in the first months of his life, signs of early skills and abilities, laid the foundation of Adam’s achievements now reached, at the eve of Adam's teenage years.

While still in Hampshire, Adam made his first efforts at blinking to communicate.  I was asked earlier this year to write an article for “Special Children” magazine on how Adam developed his blink communication. I posted the article on Adam’s poetry blog and you can link to it here.

Adam has also told in his blog of his love of books and poems from a very early age, especially the joy he gets from visiting the Edinburgh Book Festival, something he has done since the age of 18 months, missing only one year because he was in hospital for the whole of August.  Adam has never been able to run about; climb trees; play sport, things many boys his age take for granted.   His physical abilities now are limited to, when he is well enough, turning his head and blinking.  Instead, Adam’s life has been full of words, poems, stories, books; audio CDs and downloads.  Adam has always listened to stories and loved them. Paddington Bear; Maisie (the Scottish cat not the mouse); Dr Zeus; Roald Dahl; C.S. Lewis; Harry Potter; Lord of the Rings; Spy Dog; Astrosaurs; Lucy and Stephen Hawking; Charlie Fletcher and current favourite Michael Morpurgo are just some of the many books and authors that have brought joy, excitement and childhood pleasure into Adam’s life.

Adam has, for as long as I can remember, loved playing with words and learning. Reading and listening are his passions.  He has also always loved rhymes and poems and the poetry group at St Mark’s Unitarian Church in Edinburgh was the next stepping stone in the Christmas Gibbons story.  In 2009 we began going to the monthly group as a family.  Adam was the only youngster there, but loved hearing the poems being read and discussed.  One time we were told the “topic” for the next month’s meeting would be summertime. Group members were encouraged to bring along much loved poems to share including, for those brave enough, ones they had written themselves.  Adam and I were choosing a poem or two to take to the group when Adam said he wanted a go at writing his own.  Summer Time was the result.

Further poems followed soon after, some being composed relatively swiftly and some taking weeks and months to complete,with Adam having to take rests and stop and start as his health allowed.

Very soon the recognition started, first the 2010 Brit Writers “Outstanding Achievement Award”; the gold Blue Peter badge (the award Adam’s doctors seem to covert most); then the 2011 Young Scotland “Rising Star Award” and this year the 2012 Young Scot Arts Award.  With Adam as our son we have got quite used to attending glittering awards ceremonies, which have brought so much happiness and joy to Adam and us his parents, as well as wonderful memories to treasure forever.

The flip side to this story is of course that Adam does live with very serious health problems and his future is a very uncertain one.  Like other children living with serious health problems Adam accesses Rachel House run by Children’s Hospice Association Scotland.  Ironic as it may sound, Adam is often too poorly to use Rachel House, so only does so occasionally and with us, at Rachel House’s request, near by “just in case”.  This year he has also enjoyed some visits from the Rachel House “at home’ team, a brilliant initiative as they visit children and young people who can’t get to Rachel or Robin House, either because, like Adam, their health can often be too turbulent, or because geographically it is too far to travel.  Adam loves to beat members of the team at board games when they visit.  Very sick children are often offered the chance to make a wish or for their dreams to come true and earlier this years Rachel House staff asked Adam what his dream would be.  Many children choose trips to Disney parks or similar but Adam’s health makes such a trip impossible. His wish, when asked, was something much closer to home, for his poem Christmas Gibbons to be turned into a Christmas song. 

Adam had written Christmas Gibbons in 2010, as a poem to send to family friends for Christmas.  However, it is a poem that seems to have caught the public imagination.  The Minister at St Marks loved it and decided to include it in her children’s Christmas service that year.  She mentioned this to Unitarian colleagues and suddenly we heard of it being read in churches across the UK and even in Boston, USA, appropriately enough by Rev Gibbons.

One morning I also awoke to a ‘google alert' telling me that Adam’s poem was on the Scottish Government GLOW website, a site providing educational materials and support for schools.  Children are asked to learn the poem as an aid to learning English.

Adam's story of gibbons swinging across roof tops delivering presents for Santa certainly seems to grab the imagination of all who hear it.  When Adam was awarded his Young Scot award earlier this year, it was Christmas Gibbons which featured in the Young Scot film about Adam.

CHAS approached one of the wish making organisations, the aim being perhaps to get Christmas Gibbons performed at one of the Christmas concerts Adam so loves to visit, when he is well enough.  But Adam was once more in hospital and the request did not progress.  About this time, one evening as my husband and I were dithering in the street about where to grab a bite to eat on our way home from the hospital. Kim and Gary Harrison, friends whom we had met while walking Adam's dog Charlie in the local park, happened to pass on their way to the local newly opened Italian and invited us to join them.  It was a meal that was to see the birth or at least conception of Christmas Gibbons, the Christmas hit.  Kim and Gary who have both always taken a keen interest in Adam, asked, as we dined, how Adam was doing. We up dated them on the latest from the hospital and also told them about Adam’s wish.  The magic began as Kim and Gary told us of their son Tom (who we had met very briefly the previous Christmas) working as a composer and musician for the film and television industry in LA.  They were sure he would love to set Christmas Gibbons to music for Adam.  A couple of days later I received a delightful email from Tom, telling me how he had read Adam’s poem Christmas Gibbons and absolutely loved it.  Further emails exchanges told of the fun Tom was having creating the awesome music and recording the lyrics.  Adam couldn't wait to hear it.

A couple of months or so later, Adam was in a different hospital, 50 miles from home and I was staying with him, when an email from Tom dropped into my inbox with a recording of Christmas Gibbons attached.  I knew we wouldn’t be home for a couple of weeks and was eager for Adam to hear “his song”, as indeed I was, as soon as possible.

I had my laptop with me, but couldn’t get a signal in or around the hospital.  I ended up one evening listening to Christmas Gibbons for the first time having down loaded it using the free wi-fi in a nearby cafĂ©.  It was August and the other customers did turn and stare, no doubt thinking I was getting into the Christmas spirit just a little too early.  I held my phone up to my laptop to record the track so that I could play it to Adam back at the hospital without the need for an internet connection.  I rushed back to the ward to play Christmas Gibbons to Adam.  He loved it!  Tom had brilliantly captured Adam's brief to create a  Christmas song that would appeal to all ages, but especially to young kids and a song where children of all abilities could participate, singing, blinking or shaking their Christmas bells.  Adam has fond memories of joining in Rudolf the red nose reindeer at nursery and wanted Christmas Gibbons to have a similar vibe.

Things got even more exciting as Gary found animators Jess Connell and Nikki Godley who, as everyone involved as done, donated all their time and and considerable professional skills free of charge, to produce the wonderful Christmas Gibbons animation. They even managed a cameo role for Adam’s much loved dog and star of another of Adam's poems Charlie.  Once more Adam and I were in a hospital away from home, this time 450 miles or so away, when the animation landed in my email box.

Christmas Gibbons does seem to be born of happy and lucky chances; the chance meeting with Kim and Gary for dinner; the original poem and Tom both having connections to Boston; CHAS being chosen as the charity to support, having been (unbeknown to Tom, Gary & Kim at the time) the charity which had originally been hoping to arrange Adam’s wish in the first place.  Another serendipitous connection is actor Ewan McGregor, who is not only a long time supporter of CHAS but has also met  Tom.  He  heard about Adam, Tom and the Christmas Gibbons, and was quick to throw his support behind the venture.  Ewan says, “It’s quite incredible to think that Adam shares his vivid imagination with us through poetry written by blinking.  I love the idea that Santa is assisted at Christmas by gibbons!  I hope lots of people will download this track at Christmas and help to raise some money for CHAS at such a poignant time of year.

Monday 3rd December 2012 is the big day when Christmas Gibbons will be on iTunes with 50p from every down load going to support the work of the Children’s Hospice Association Scotland.

Enjoy the preview of Christmas Gibbons, but do please also down load it from Monday from iTunes and encourage all your friends, families and colleagues to do the same.  If you have children yourself I'm sure they will love it and I am sure being a parent will also make you appreciate all the more the work CHAS do.  If hundred, thousands, even millions of people download Christmas Gibbons from iTunes, that way, Tom, Adam, Jess and Nikki and everything Gary and Kim have done, and not forgetting Charlie Dog will make this Christmas an extra special one for the Children’s Hospice Association Scotland and all the children, young people and families they support. 

Tom, Jess and Nikki have made Adam's Christmas wish come true, together we can do the same for other sick children. Happy Christmas!

p.s. If you would like to make an additional donation to CHAS, Adam has a Just Giving Page for donations to CHAS, which you can link to here

Monday, 26 November 2012

UPDATE ON MY FUNDRAISING FOR BOBATH SCOTLAND


I am delighted to tell you that with a little help from my friends, well a lot of help really, I have raised £1,1160.15 from my Book Bring & Buy For Bobath Scotland and my Big Name Book Raffle.

So thank you to Michael Morpurgo for donating a signed copy of War House, to Ian Rankin for donating signed copies of Set In Darkness and Dead Souls and to Clare Balding for donating a signed copy of My Animals and Other Families.

Thank you also to everyone who donated second hand books for the sale and everyone who purchased tickets for the raffle or bought books.  A special thank you to the very kind gentleman who donated £800 and the very kind gentleman who donated £50.

Unfortunately I was to poorly to attend the sale but thanks to all my family and friends who worked so hard to make the day a big success.

If you want to learn more about the brilliant work Bobath Scotland do, take a look the blog I wrote last year when I visited for a block of therapy.

Although I missed the sale, I really loved working with mum on this fundraising project and I already working on something new and very exciting which hopefully you will hear about very soon.