Friday, 16 December 2011

Just To Clear Something Up... We Are Not Scroungers!

My son is disabled....
He has Down Syndrome.
He has regular health issues.
Regular check ups.
Hospital appointments.
And new problems arising everyday.
He has little speech and communication.
This causes frustration, which in turn leads to violence and tantrums.
We have had to learn new ways to communicate.
This sets him apart from his peers and he knows this causing more frustration.
We have to become translators to others... often causing even more frustration on his part.
We have to be extra aware in public due to this.
We also have the extra worry that if lost, he then will not be able to communicate who, what, why, where etc.
Due to lack of all of the above he needs constant watching and reassurance.
He also wears a hearing aid.
He has lack of understanding of his surroundings and of danger most of the time.
This causes danger to himself and others.
He has poor muscle tone.
He walks less than a few metres before he has problems mentally and physically.
He falls over a lot.
We have to use a very large buggy to cart him around if walking distances where we can't stop.
We have problems pushing him because he's so heavy as he is now 9yo.
He is too heavy and too tall to carry.
He has chronic constipation due to a lazy bowel and only goes once a week with medication.
This makes him uncomfortable, in constant pain and frustration.
He has 2 sets of clothes, 1 for when his belly is swollen (before meds) and 1 for when he's not (after meds)
This also leaves problems after his meds are given due to lack of control of his bowel (use your imagination).
His immune system is very low so he catches everything.
Winter is hell for us due to this constant illness.
We tend not to leave the house and he misses a lot of school.
This stops his routines.
This also stops him having a normal active life like his peers.
I also get ill because he gets ill... this is the way of parenthood though.
We struggle to get normal things done a lot of the time due to the problems listed above.

I struggle to find jobs flexible enough to work around his constant illness making me unreliable.
I am now and have been for 9 years, a full time, stay at home CARER.
It is a 24/7 kind of job.
It is hard mentally and physically.
I do not get paid for it.
I do not receive a single benefit to help with MY living costs in exchange for it.
Therefore we are a single wage family.
Hoff is taxed as much as the rest of the working public.
We are not entitled to any form of Tax credits.

Kyd however, receives Disability Living Allowance.... Does that make us scroungers??

I have missed so much out of this and I know other parents of Down Syndrome children and children with other disabilities, will be able to relate and add to the list as each of our children are so similar yet so different.... so be open to interpretation whilst thinking of people you know with these problems.

I have recently had a fight on my hands and I am proud to say I won. I went to a tribunal to fight for Kyd's right to have his Higher Rate Disability Living Allowance reinstated. It took a whole year with very little money, lot's of work for me to do, lot's of note taking, statement getting, research and diary writing. I got as much evidence from as many people as I possibly could to prove to the Government that Kyd was as disabled as I had told them in my forms....

That's right, I had to prove my son had the problems he had because my word nor that of ALL of Kyd's specialists were enough to get an agreement from the office workers who decide on, just by reading some badly planned out forms that need a degree to fill out, that my child actually has the generic problems that come with Down Syndrome that haven't really changed much over all these years...

Shame they can't do the research themselves about even the smallest generic problems concerning each disability and store it on a system that these office workers can reference when doing their jobs.... instead of causing heartache to the parents by making them feel like they are lying scum that are trying to fiddle the government out of the little they actually give to the disabled now.

After winning my fight we decided that the best way to ease our lives with Kyd's issues would be to get a mobility car, which we were entitled to now he had his full claim. We had been struggling not having a car and although we would have loved to, we just couldn't afford to run one anyway. With our new full claim we were able to get on the mobility scheme and by doing this we would be able to transport Kyd around and have an easier life knowing that he was in fact safer than he is walking. Those of you with cars will understand how much easier it is to have one when you need to go anywhere with children or in a rush. Those of you without cars will understand those times that you could just do with a car, if you times that by twenty, that is our everyday need for a car.... We could go on living without a car... but if one is on offer and will make both Kyd's and our family life easier, why would we turn our nose up at it?

I have come up against some prejudice about the fact that we are now on the mobility scheme from those who are obviously quite ignorant to our situation. Although not to my face which I resent quite a bit. I would like to set the story straight and give you another way of looking at it so that you can have a fully rounded opinion on the situation I hope and pray you will never find yourself in. Therefore giving you a more open view and a less one sided argument.

We are not faking an illness to receive this benefit we quite obviously have reasons why we receive it.
We quite simply want and need to ease our life, so we can concentrate on the things that we can help, rather than worrying about the consequences of those situations we can't.
This is what this benefit is there for after all.
Hoff works bloody hard to provide for us and we are a one wage family because I currently can't help towards the situation because of the above situation, and as much as that makes me feel guilty, he does a bloody good job and works bloody hard and continuously to give us a roof to live under. 
We don't receive any other help from the government apart from this Disability Allowance to help Kyd.

I am pretty sure most of you concerned get tax credits etc which are from the government and paid for by the tax payers... just like Disability Living Allowance.

So what makes you any different to us?

We too have to save for everything we buy, for every time we go out and for everything we need because we can't afford to just spend willy nilly. We couldn't afford the car, we so desperately need, without the help of the Disability Allowance and we are so grateful for that. We do not take this for granted and we do not expect anything from anyone apart from what we are told by the guidelines of the government that we are entitled too!

... You can afford to run your cars and wear all your lovely new clothes, go out, buy new things and live your lives as a family on the money you get for the hard work you do... but you struggle...

I understand that... because we are exactly the same, except we have all the added fun of the above mentioned daily life to contend with.

If you are having problems with cash but can afford to run a car, smoke, drink, have sky, go out and buy random purchases.... maybe you should look at your outgoings rather than attacking the people who are getting the tiny bit of help that they fully deserve and are entitled to.

The negativity and ignorance you show towards my situation and the situation of others just screams at me that you have your own issues and in fact we are just a scape goat for the loathing of the situation you are in.... Bit harsh but I'm pissed off that I have even had to write to explain myself when it seems so bloody obvious to me and to most others, that parents of children with disabilities are struggling everyday with so many different things and you are begrudging me, and them, the little bit of help and respite we get from the government because you are jealous of our income??... Try walking in our shoes for a day, a week, a month, a year and then tell me that it is out of order that we get this and you don't.

Grow up and Wake up - Life isn't all equal and maybe you need to stop wallowing in self pity and respect what you have.

Think of it this way... What we get for Kyd is only a tiny percentage of what Hoff pays in Tax... meaning we are just taking out only a tiny bit of what he is already putting in!... you can call it a tax rebate if it makes you feel better...

Tuesday, 6 December 2011

The day Kyd got his KICKS.... as RFC Mascot!

This time last week I was as sick as a dog and just leaving the hospital due to a stupid infection... but at home, with a smile on his face, Kyd was getting ready to brave the cold November night, in his footy kit to live his dream on the pitch with his heroes and be mascot at Reading FC vs Peterborough Utd.

Laying in my hospital bed all I could think of was my baby, my big baby and his upcoming appearance in front of 1000's of people as the Royals (Reading FC) mascot. Would he deal with it? Would he freak out? Would he struggle to understand what he was supposed to do?... but more importantly would I be there to see his big day?

Kyd has been a season ticket holder for 5 years and in that 5 years he has watched the players come and go. He's got heroes and he's got villains (mainly the Referee). He's seen triumphant wins and he's seen hideous losses. He's met the players and he's had the tours.... But never has he wanted anything more than to step on that pitch and kick a ball with the boys!

Thanks to FreeKicks, an amazing charity offering sick, disabled and underprivileged kids opportunities with their heroes on the pitch, Kyd was able to be Mascot at a game that meant a lot to him. The charity is run on a voluntary basis by Steve Thorpe and Sam Downing. Steve’s main responsibility is fund-raising as well as using his extensive media contacts to gain publicity. Sam is the Kick Co-ordinator, she liaises with clubs, hospitals and families to ensure that the children have a day to remember. The days out, which are called ‘kicks’, could involve being a team mascot, meeting a favourite player, tour of their chosen stadium, receiving a special gift or anything football related they can organise to make it a day they will never forget.

FreeKicks is a Peterborough based charity and they work closely with Peterborough United (known as 'The Posh'). We have close ties with the Posh too as a very close friend of mine, Phil Adlem, is their trusted Press officer of 10 years. Phil nominated Kyd to get his Kicks at the Royals vs Posh game as he knew Kyd would love it and that he would remember it forever more. Kyd was also mascot for the Challenge 42 world record breaking attempt done by other Posh and Royals fans who raised £1250 for Freekicks this summer, by playing a 42 hour non stop footy game... it was very tiring even to watch so they did so well to keep it up in the heat, we were very proud to be involved. If it wasn't for the funds raised at events such as this kids like Kyd wouldn't be able to get their Kicks so we are ever so grateful to all the boys (and girls) involved.

Kyd's day began as usual as he went to school all excited. My day began with several more pills and the announcement that I'd be OK to be there at the game for his big day.... but only if I wrapped up warm and took it easy... hard to do at a football game as I tend to shout a lot... but I agreed and was just relieved that I wasn't going to miss it.

He was picked up from school and as he entered the house to find his full kit and training gear, including boots ready and laid out on the sofa he began to get very excited. Today was the day! He ate his tea and got dressed into his kit.... included in that kit was a weather proof vest as it was the end of NOVEMBER and bloody freezing after all! Then with an excited squeal he got in the car ready for his adventure!

On arrival we met up with Gill Jacobs, the Royals mascot coordinator and Steve and Sam from FreeKicks at reception. We made our way upstairs and had a drink in one of the lounges. We got Kyd ready for his big moment and he received a few goodies from both FreeKicks and Reading FC. We made our way downstairs and here was where the fun started...

He started to get very excited. His rocking backward and forward excited movement began and his face became a picture. The smile melted my heart as he spotted Kingsley and then our manager Brian Mcdermott. We then went pitch side and with his training gear he put on his shiny new boots..... then that moment came.... I said 'you can go on the pitch now'... the reaction again melted my heart... 'Really?' he said with an amazed face... He must have thought I was lieing all these weeks when explaining what he was going to be doing there! As he walked on the pitch his face lit up. They kicked him the ball and he looked at me like he was asking for permission to kick it back... at this point he was just warming up with some of the staff so I couldn't wait for him to there with the players. He then returned into the tunnel, stripped down to just his kit and there he was... my little football star... looking all grown up.

There he was ready and waiting and the excited rocking backwards and forwards began all over again... but now it was because he was getting ready to go in the changing rooms and meet the players he'd watched for all these years!... I might add I wasn't allowed in the changing rooms, for obvious reasons! Which was devastating! Damn it!... He looked at me with a gleam in his eye and then walked in... I waited outside and when he returned he had a notepad full of signatures and a big black arm band on. This particular game we were doing a minutes applause for the late and tragic Gary Speed. Some of our players played for Gary speeds Welsh team and as respect to him the whole team were wearing their black arm bands in memory of the amazing footballer and man that he was. Noel Hunt thought that Kyd deserved to show his respect as much as the others as he was 'one of the boys' as he later tweeted (I am really grateful to Noel for making him feel so special he was so in love with that arm band he showed it to everybody!).

He was then ready to go out on the pitch, and as the team were being announced I could see Kyd standing there with our captain Jobi Mcanuff looking around like he was in heaven. He held on to his hand and made his way up the steps. All my fears were gone and here emerged THE most confident 9 year old ever to step out onto the pitch. He lined up with the team and walked the line to shake hands with the officials and the Posh boy's... a few of which he had met before. His little legs must have been freezing but the adrenaline was enough to keep cold out for that short time. As he reached the end of the line with Jobi by his side, he ran straight into the centre circle clapping his hands above is head like a real pro. From accounts of others in the stands he looked as though he played for them every week. Jobi kicked him the ball he stopped it and passed it back to him with great precision. I was being tweeted from left right and centre telling me how brilliant he was. He had his photo's taken and made his way off the pitch with Kingsley the Lion... We then stood for a minutes applause for the late Gary Speed pitch side. It was lovely to see everyone honour a man that had made such a difference in the football... however he died, whatever his mental state of mind, he lived for the game and we should all remember that mental health issues can affect anyone, both men and women, even those who seem to have everything... this is the sad reality we live in. RIP Gary Speed.

The smile and the enthusiasm beaming out of him, made standing in that cold winter chill well worth it. He was grinning from ear to ear. We made our way around the pitch to our seats where he changed out of his boots and put on layer after layer to keep him warm. Here is where the mascot package usually ends and we would watch the game and go home.... BUT Kyd had been given a special job for half time which would see us back by the tunnel picking the Golden Gamble tickets. He ran back around the pitch and waved at the players as they went for their half time team talk. Even the Posh players smiled and waved at him as I tried to stop him following them into the tunnel. Phil met us pitch side to see how Kyd was getting on and he beamed at him too. They announced Kyd's name and asked him to give the fans a wave. He waved at the west stand... then right back at his home boys in the East stand (where we sit)... the announcer thought this was brilliant and began to laugh over the microphone... he was acting like a celeb pressing the big button on the lottery! He picked out 2 tickets... both from the East stand! I was praying that he hadn't picked out any of our mates as that could've been seen as a fix... lol. But after a Hot chocolate and another wave to the crowd we returned to our seats ready for the second half....

I was shattered as I was still technically ill. He was shattered. The players were shattered. It was a long and exciting 3-2 finish. at the beginning of the game I had asked Kyd what the score was going to be... he said 3-1 and it looked like it was going to be 3-1 finish until Posh got a late last goal... ruined it for him... how very rude of them! We even managed to score in the first half breaking the first half 'No Goal' glitch we'd had ALL season! Making the fans ecstatic. If I'm honest Posh were the better side during the game but our boys brought it to a win for Gary Speed and for Kyd....

Just to add... I had tried to get Gabs Zakuani (one of the posh players) to score an own goal on Kyd's behalf and although he almost did in the first half, much to our delight and amusement.... he failed to see it into his own net! Boo Hiss Gabs you spoil sport! Maybe next time! lol... Gabs also gave us one of his #everydayimtackling t-shirts in which Kyd was sporting at the end of the game... thanks for that Gabs.

Kyd was named the 'Lucky Mascot', by his fellow fans and he sure felt lucky....

He was still beaming when we got home. We struggled to get his kit off him and he kept his black arm band in his hand as he fell asleep. Luckily he had no school the next day due to the strikes so he had a lie in. He was still excited as he woke up and as the Reading FC website added his photo's to his very own Gallery on their site and tweeted and facebooked about him, his excitement grew. I have never seen him act like such a Diva before, demanding to see the photo's again and again!

Here ends the story of Kyd's Kick. I managed to watch it without ending up back in hospital and Kyd... well, Kyd will love this day forever.

He would like to say thank you to all involved in FreeKicks, Challenge 42 and Reading FC. He loved the whole experience and it will be one he takes with him for the rest of his life. He would also like to thank Phil Adlam for all the support and for nominating him for the Kick, Noel Hunt for his all important black arm band and Jobi and the team for making him so comfortable on the pitch....

If you know anyone who you think deserves a Kick (not literally) or you'd like to fund raise for them don't hesitate to contact Steve or Sam at FreeKicks they would be happy to try and make their dreams come true- click here

Follow FreeKicks on Twitter to keep up to date with the charity and show your support!

Monday, 5 December 2011

ONCE UPON A TIME... I wrote a story for Save The Children

This story was to be part of a book, a book made up of stories written by other Mummies and Daddies.
made up of Characters both goodies and baddies!

The book would raise money to help children far and wide,
to let those children know that we are all, right there, by their side.

I am so proud to be a part of such a great and lovely idea
and would like to make the next part ever so clear...

All the profit from this book goes straight to Save the Children
Non of the Mummies and Daddies have even slightly billed them.

We took time out in our busy and hectic day,
To write our little stories and shout out loud and say,

'We Care about children whether they're ours or not,
and we will do what we can to help the lot'

But now we need you to make this worth while,
Just click on the link, buy the book and just Smile!

as by buying this book for yourself or a loved one,
You've helped Save the Children and let their healthy lives live on.

From all of us Mummies and Daddies involved with this book,
We'd like to Thank You for both buying and taking a look.

Now could you promote it as much as you can,
without making it look like some dodgy spam.

To share the page hit the button below,
what are you waiting for? come on, lets GO!