Would It change what I believe? 

As I placed my lottery this weekend I was wondering about what I would do if I won the jackpot. A dream i’m sure we all have had at one time or another. I was wondering if being a millionaire would change my political view point. 

It’s easy I guess to say tax the wealthy when you are poor. Would my view be the same if I was one of the elite?

I didn’t have to think about it that long because I truly think my answer would be no.

I don’t think my viewpoint would change.

You see no amount of money can replace my compassion or my empathy.

But most of all money couldn’t replace my need to feel part of something.

You see we have all been sold the lie that being individualistic is the only way to live. To only think about oneself and our own wants and needs. But this only leads to one thing loneliness. 

The consumerism lie that things can make you happy has been pushed down our throats way to long.

Yet the truth is far from it. 

The newest model phone can be fun, but will it hug you close as you fall asleep?

That gorgeous designer handbag will look good on your arm but will it laugh out loud at your stupid jokes or wipe away your tears when you are sad?

Community and relationships are the greatest of things and money cannot buy them. 

Having money won’t stop me loving on children who have no place to call home.

Stop me fighting for services and support for my friends who are either disabled or raising disabled children.

Having a full bank account will not stop me encouraging those who need support or guidance. 

I’m not going to lie and say winning the lottery wouldn’t be amazing. My adapted home on a farm depends on it. 

Yet whilst the money would make life easier it wouldn’t make me complete.

It’s my, family, friends and passions that do this. 

   

I’m on the T.V

So a few weeks ago I blogged about my youngest daughter winning the Mayor Civic award  due to this amazing achievement Brodie and I were asked into our local tv station to share more about the award and Livvy.

Take a look at our interview here.

Be kind, I love to talk and Brodie bless her got stage fright.

 

 

If you want to learn more about Livvy’s Smile check out our website Livvy’s Smile and if you are interested in joining us to celebrate Livvy’s 16th Check out the facebook event here…

Autism awareness week – Speak Up

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This week is World Autism Awareness Week and we are Speaking Up and standing up for autism.

Its not just about raising funds for autism support it is about spreading the word and raising awareness.

Here are some facts and statistics about autism.

  • Autism is a serious, lifelong and disabling condition. Without the right support, it can have a profound – sometimes devastating – effect on individuals and families
  • It is a spectrum condition, which means that, while all people with autism share certain difficulties, their condition will affect them in different ways. Some people with autism are able to live relatively independent lives but others may have accompanying learning disabilities and need a lifetime of specialist support.
  • Autism is much more common than many people think. There are around 700,000 people in the UK with autism – that’s more than 1 in 100. If you include their families, autism touches the lives of 2.7 million people every day.
  • Autism doesn’t just affect children. Children with autism grow up to be adults with autism.
  • Autism is a hidden disability – you can’t always tell if someone has it.
  • While autism is incurable, the right support at the right time can make an enormous difference to people’s lives.

 

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Raising two children who both have a diagnoses of autism has made me really realise how vast the spectrum is and its this degree of variation that leaves many struggling with little or no support.

There need to be more investment placed in early and true diagnoses and support given.

There also needs to be more support to those who care for children and adults with autism.

I can honestly say that why I love my children with all my heart at times autism has led me to some isolated places. Its hard watching your children struggle to understand, get frustrated or anxious. Its also hard when you are the receiver of their frustrations. Having the right support and guidance is invaluable.

So that is why this week I am Speaking Up to raise awareness of Autism.

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Please visit the The National Autistic Society and learn more about Autism

 

 

Don’t forget to join in with this weeks Speak Up and tell me what your are passionate about and let us support and encourage each other.

Nowhere to call home.

Over the year or so my husband and I have needed a new bed.

Springs in our backs and aches and pains all over from the old mattress.

A month or so ago this situation became desperate when our bed broke and only one of us could sleep on it at a time.

Thankfully last week we finally purchased a new bed and I cannot express how lovely it has been to sleep comfortably, waking without aching joints.

This has led me to really think about those that have no comfortable bed to sleep on.

Those who have no bed at all.

As winter strikes and the weather reports show freezing temperatures I cannot envisage how truly awful it must be to be sleeping outside in these conditions.

While we are all getting excited about the falling snow imagine the cold white stuff being your pillow throughout the night.

With charities seeing the amount of people sleeping rough in the UK rising each year it is a situation that needs addressing.

As I watch my daughters sleep in the warmth of their beds  and the safety of their bedrooms, I cannot imagine that children their ages are sleeping out rough, have no where to call home.

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But latest findings from http://www.homeless.org.uk show that this is the case.

  • 52% of those seeking help with homelessness are under 25.  
  • Councils are preventing homelessness amongst homeless young people in just 1 in 5 cases.
  • More than half of young people become homeless because of a relationship breakdown, mainly with their parents.
  • Homeless young people face a range of complex problems – more than 6 in 10 are not in education, employment or training for example.  
  • Half of agencies believe the problems faced by young people have got worse since last year. 
  • Charities report that homelessness caused by financial problems due to benefit reductions has increased six-fold. 90% believe sanctions have affected young people’s ability to access accommodation.  
  • 74% of homelessness organisations were unable to support a young person due to limited capacity.

I confess these figures actually left me in tears.

I am a foster carer and I am aware of the breakdown of relationships within families etc but was not aware of the scope of this issue.

So much more needs to be done, homelessness is on the increase and more support, services and advice need to be in play.

This is why I encourage you all to visit http://www.eyh.org.uk and sign the petition and add your support to the coalition of charities and businesses working to end youth homelessness.

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No young person ever asks for the circumstances that lead them to becoming homeless.

 

Stop hating on Band Aid 30 and start loving those dying from Ebola.

So Its official I am getting serious peeved with all the negativity surrounding the Band Aid 30 single.

 

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It’s as if whatever people try to do someone will have a moan.

From comments regarding the tax status of the singers to the rampant disregard for the devastation Ebola is causing.

Let me state a few things here.

The tax status of the singers involved has no place being discussed alongside the single.

If Sir Bob or Bono are evading taxes then that’s a issue for the government to deal with.

They will be tax evaders regardless of our spending of 99p to buy the single,

If we don’t buy the single in protest the only people that will lose are those dying from Ebola.

If you have an issue with the wealthy receiving tax breaks well then us your vote wisely at the next election.

Those dying from this disease in Africa right now well they don’t make government policy.

Secondly I don’t give a damn if One direction are flying about in separate planes because they don’t get on.

Does this effect the support we can provide to fight this disease “No.”

Should the singers involved in the single be donating their money not their time?

Maybe they have !

Who knows why are we jumping to the conclusion that it’s one or the other.

Let’s be honest if they were out in the media shouting about their donation we would be ripping them apart for this too.

Damned if you do damned if you don’t. 

There are also many other entertainers out there who have done jack shit let’s not beat up on the ones that have.

So what if Sir Bob swore on television maybe he was annoyed that a reporter decided to take the subject matter away from the real issue “the people dying”.

We can all take cheap shots over tax breaks another time maybe when this devastating disease has been beaten.

It’s crazy it’s a 99p single.

It’s not about the singers.
It’s not about the lyrics.
It’s certainly not about the tax returns of the performers

It’s about a devastating virus which has so far infected over 13,000 people and claimed the lives of over 5000.

I’m tired of excuses.

Like the single or don’t that your choice.

Buy it or don’t.

But stop telling others how they should help and do something yourself.

Imagine if we all waited for others to act.

How many lives will be lost due to our inaction.

Donate today and let’s stop the outbreak in its tracks.

Let’s not lose anymore lives to Ebola.

Fostering is a career.

I’m excited to share with you the news that I am now blogging over at the Fostering with Progress blog where for the next 6 months I will be writing a number of articles on a variety of foster care subjects.

As many of you know I have been fostering now for over five years and I am extremely passionate about what I do.

Here is my first post which I am also sharing here; as I think it is interesting for all not just foster care professionals.

 

One of the most common misconception’s regarding foster caring is that it’s just like raising your own children. A agonizing stereotype I know, yet this limited perspective of what is really involved, also leaves many believing that you need to have raised your own children to be a foster carer which actually is not the case. 

Quickly I shall dispel other common pigeonholed viewpoints, yes; you can be a parent already, no you don’t need to previously have had a child of your own. Your marital status, sexuality, religious or cultural background will also not prevent you from fostering.

Fostering is a profession, it involves a skill set that extends well beyond the typical parenting prowess, yet the only real qualification you need to have is the desire to support and guide children. There are various types of fostering; including Emergency, Short- term, Long-term, leaving care, short break, parent and baby, and specialist care, yet all share an identical factor, the placement of children, whom through no fault of there own have been separated from their birth family and are often vulnerable, damaged and hurt. 

In the best cases you are dealing with bereavement, while the worst circumstances can involve abuse and, or neglect, at first this seems a rather bizarre assertion, the cold reality however, is a child who has suffered neglect / abuse, or even both, often suffer with more psychological stresses and fears.   

Unlike most caring professions, fostering gives a new meaning to the term full-time, it’s far cry from shift based employment, and you don’t get to go home and leave it all behind. Fostering isn’t easy and to be truthful it shouldn’t be, it’s a profession, which holds the wellbeing of a child in its hands. Yet as a foster carer you can lead a fulfilled career whilst making a difference in the life of a child, plus you can achieve personal development and qualifications that are suited across the care sector. Though each company is different, my agency; Progress Care; certainly encourages us to extend our skill set and education.

While money should never be the reason you become a foster carer, an income is necessary for the majority to be able to foster, the provision of a living wage enables us carers to flourish in a role that can be exhausting and challenging and yet personally for me, has been so rewarding.

You get to make a difference in the life of a child, complete job satisfaction. 

 

 

Tweet with kindness or don’t tweet at all.

I must admit that the last week or so i have been glued to my chair watching the antics of the housemates in “Celebrity Big brother” while I have no interest in the counterpart “Big Brother” there is something about the celebrity version that has me hooked.

 

It’s just the inquisitiveness part of me that just wants to know what these people are really like. The truth not just what we read or hear about them in the media.

 

So when I heard that Deirdre Kelly aka white dee was entering the house i was so excited i could have wet myself.

 

Since Benefit Street was shown I have loved this lady. While others saw a benefit scrounger I saw a lady with so much compassion.

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I really admired her courage entering into the big brother house not knowing how she was going to be received.

 

I also knew that finding herself on show could have really affected her depression but give it up for the lady she wants to better life for her and her children so she walked up those famous steps.

 

I have loved watching the show, there are characters i am already loving to hate, James for one. Honestly if that man says “let me explain how it was” once more i may scream and surprise ones that i have taken to my heart, George for example. But the front runner and still my favourite is Mrs Kelly.

 

I love that lady.

 

So imagine my disgust to come across tweets laughing at her sadness that was shown on last nights episode.

 

The lady may or may not ( I can’t speak for her) seems to be finding herself on a roller coaster of emotions. Missing her kids, wondering how she got there and generally fighting the evil of depression.

 

I have seen tweets finding this funny.

 

Tweets accusing her of faking it for the money

 

And the worst ones saying that depression is the biggest con of all time.

 

I wonder what is going wrong in this world when people can say such things.

 

Why do some thing its ok to tweet such vileness?

 

Tweet with kindness it won’t kill you.

 

 

I only hope that Dee’s children are not reading such crap and are watching the television being super proud of their mom.

 

I think the world needs an education regarding depression, I have heard it quoted as “rich persons syndrome’. “Benefit scam” and a lot worse.

 

Depression is a devastating illness which can and does rob life from many.

 

As for those tweeters i hope everyone unfollows you and that way you can stay being sad and horrid in your own little world.

 

While i believe and advocate for the freedom of speech I do not believe that people need to be so cruel.

 

It’s not just about Big Brother its about so much more.

 

The fact that we have so many turning to social media to breed hate rather than love.

 

It’s just wrong.

 

As for me I will be ignoring such crap and will be rooting for Dee to win Celebrity Big Brother and hope that the millions of viewers get to see what I see, one damn fine lady.

 

I will also being trying to share love and kindess from now on.

 

[Tweet “Tweet kindness or don’t tweet at all “] is my new motto.

 

 

The crazy bunch of people I love.

So after I  had published my countdown post to Special Kids in the UK I found myself re-reading it from the perspective of someone who didn’t know the people I was writing about.

 

I wondered if I had given you the impression of a camp that was about disability and only disability.

 

Now after spending a crazy wonderful week there I want more than anything to give you a little more insight into who we really are.

 

Yes Special Kids is a charity which was formed by parents with children with disabilities for the use and support of other parents in the same situation.

 

It is true that this is the life we live, but it isn’t all we are.

 

We are fun crazy people that have somehow found ourselves in the world of disability.

 

Yet we aren’t just parents and carers of children of disabilities and our children are far more than just syndromes and conditions.

 

We are a diverse group of people.

 

From wine drinkers to tee-totals.

 

Drag queens to doctors.

 

We are sporty, creative, energetic,caring, imaginative and eccentric.

 

We have parents with full time careers and we have stay at home parents (a full time job in it’s own right.)

 

We are each unique and that’s why it works.

 

We are different but united.

 

Please don’t imagine this camp as a group of people sitting around a camp fire full of woe me for life.

 

You will find us sitting around that said fire laughing at the antics of our young adults, roasting marshmallows chatting into the small hours.

 

You will find us dressing up in weird and wonderful ways, wheelchairs transforming into race cars and families transforming back into the stone ages.

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Sharing life with others that understand that really get it.

 

Life is about living and the people that I camp with understand that more than most.

 

Special kids in the UK camp is about support and compassion but mostly it’s about friendship and laughter.

 

I am so blessed that I get to call this crazy bunch of people my friends.

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So thankful that one day about 9 years ago i came across Special Kids in the UK.

 

I love these guys xxx

 

*Credit for the photographs go to members of Special kids xxx

 

My A-Z of Special Kids in the UK camp.

The last few days I have been having a fantastic time at Special Kids In the UK camp.

I wasn’t sure how to describe my time away until I wandered past a group of campers playing the A-Z game in a rather unique way.

So here is my time at camp from A-Z.

 

A – Amazing

B –  Beer o’clock

C –  Caring

D –  Drag queens

E-  Enjoyment

F-  Friendship

G –  Games

H-  Hugs

I-  Informative

J-  Jumping

K-  Karaoke

L- Livvy & Lucy- Mai

M-  Memories

N- New friends

O-Old friends

P- Pig roast

Q- Quality

R- Restore

S- Special

T- Tea tent

U- Ugly bug ball

V- Volunteers

W- Wobbly walkers

X- X-citing

Y- Young & old

Z-zzzzzzzzzzzzz

 

Is it my fault my child is disabled?

When my late daughter was born I contracted MRSA and was so very ill. I was trapped in hospital in isolation not allowed to see my children including my precious newborn.

 

I blamed myself for such a long time as I knew how important those first days of bonding were.

 

When Livvy’s regression started I was told so many things including “I have to accept that not all kids are the same and that I should be grateful for two bright kids”. “Are you lonely and want attention” “you are neurotic” to the worst one from a doctor “I think you want there to be something wrong with your child”.

 

I was broken I had this child who had gone from a pleasant baby, toddler into a screaming child

who wouldn’t even look at you.

 

The doctors eventually diagnosed global learning but I wasn’t convinced they just wouldn’t listen when I told them she used to walk, talk and engage with you. They just smiled and brushed over the subject.

 

I honestly thought I was going mad. Yes I was exhausted I had a 5, 4 and 2 year old to care for. I started to let the words of the doctors convince me I was wrong. Maybe I had missed the signs, I mean I did have my hands full.

 

I had lost my baby girl into a world that she wouldn’t let me access I was devastated. Maybe it was my fault. If only I hadn’t got ill. I hated myself and was sure I was the worst mom in the world.

 

I sat at toddlers groups watching Livvy scream when other children came close. My heart was in pieces.

 

In the end I retreated, my own world was safer.

 

Then Livvy’s seizures started. The first one scared me so much I nearly dropped her. Febrile convulsion I was told, twenty more later the doctors were confused.

 

The same doctor who had accused me of wanting to believe my child was ill was now informing me that I had a very poorly child and was looking worried.

 

Was this my fault again?

 

Life got crazy, nobody had any answers until a community paediatrician handed us the words Rett Syndrome.  A week later the neurologist confirmed it.

 

I didn’t want this diagnoses but the more I read into it I realised i wasn’t to blame.

 

I couldn’t have caused it.

 

Something inside of me changed right then as I read the research into the condition.

 

“Baby girls are born “normal” but begin to lose acquired skills between the ages of 1-3 years old. ”

 

See I wasn’t wrong.

 

This gave me so much strength. I wasn’t a bad parent, I hadn’t let her down.

 

It wasn’t my fault,

 

This realisation gave me the courage to break the chain of lies that were in my head.

 

No more.

 

I was determined to do as I had been.  Being the best mom I could to my now four beautiful girls. I armed myself with knowledge to quieten those who shared their ignorance with me and believe me many still did. I don’t believe it was with malicious intent but my goodness some people do need to think before they speak.

 

The darkness began to lift and I realised that it had been the fear that her condition was my fault that was slowly eating me up inside robbing me of my joy.

 

It’s not easy when you realise your child is disabled. You question everything you did. I ate healthily when pregnant. Didn’t drink or smoke.

 

Yet somehow the comments from people and professionals had cast doubt in my mind.

 

Was it my fault that my daughter was disabled?

 

No it blooming was not.

 

It was one of those things in life that just happens it was caused by a single gene mutation that leads to underproduction of an important brain protein.

 

I couldn’t be responsible for that.

 

This knowledge set me free and the fear dispersed.

 

I was then able to live life for the gift it was.

 

Livvy emerged slowly from her own world and her mischievous spirit started to show.

 

My other daughters just grew and bloomed.

 

Life was good.

 

Then in 2008 we lost my beautiful girl.

 

As the pain tore into my soul the words “it’s your fault ” returned to mind. “You should have seen, you should have known.”

 

Thankfully, I can’t believe I’m writing this but thankfully the inquest told me otherwise. Livvy had lost her battle to a rare virus and the complications of Rett Syndrome.

 

There was nothing I or anyone could have done.

 

One thing I have learned this last few years is that even with the truth in their faces some people will believe what they want to believe.

 

Maybe it’s ignorance maybe at times it is spite.

 

I can only be responsible for my own mind and my own thoughts.

 

I was blessed to be Livvy’s mom and nothing or no one will ever take that from me.

 

 

I honestly believe the whole process of the diagnosing of children’s disabilities need to be looked at.

 

Doctors, health professionals need to listen closer to parents. We may not have the medical degree but we do know our children.

 

If doctors had listened closer to me when Livvy first went into her regression her diagnoses would have come sooner. But also I personally wouldn’t have had to face the internal pain believing it was my fault.

 

I’m sharing this today after reading my friends blog over at Autism and love. Although our journeys are very different again I see how easy you can be left believing your child’s disability is your fault.

 

The time up to Olivia’s diagnoses was so hard. Hearing words like “naughty child” or “attention seeking” leaves you feeling so very lost.

 

Health professionals need to be more aware of the impact that statements like this leave on a parent . To be aware of what they must be feeling. No one plans to walk this pathway so more support is so needed.

 

Finding out your child has a disability is so hard. You have to let go of many dreams you had for child’s future. Let go of the life you used to have.

 

But with the right help, support and friendship your life can and will be a good one.

 

My life is so different because I got to be Olivia’s mom and for that I am truly grateful.

wonderful gift