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.

Speak Up – A stitch in time

For the last 14  years I have been working with professionals within the social care field where there is a majority opinion that funding given in early support services would make savings later on and make a more dramatic difference to children’s lives.

Investment in the health of pregnant women leads to healthy children.

Support for young, inexperienced mother’s lead towards more educated, healthy happy children.

Guidance and support in youth services leads to less in the juvenile correction system and so on.

Yet for so long services seem to be funded in a catch up manner, fighting the fires when the fire is at full blaze.

So this is why I am getting behind a campaign being run by Action for Children, Barnardo’s, The Children’s Society, and NSPCC called “A Stitch in time”

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We say it’s time for change.

Responsible government must invest in services and support that prevent problems before they start — to improve the lives of children and families and save money for taxpayers in the long run. That is why we are calling for all political parties to make a commitment to shift the emphasis of public services to early support.

We want the next Government to focus more on early support
 to help children, young people and their families.

1.

More stability into children and family
 services – five year spending plans

Making five year funding commitments — from one election to the next — would allow the Government, local councils, and other service providers to make longer-term plans. Most importantly, children could stick with the same support staff as they grow old.

2.

Help your local £ work – promote
 Community Budgets

Community Budgets allow providers of services to pool their budgets. This reduces waste and makes it easier to work together
 to help children. It’s a relatively new way of working, so the Government needs to support its development and promotion.

3.

Show us what’s
 happening – more accountability

With spending moved towards early support, we would like to see annual progress reports. Parliament should be involved in scrutiny through the Public Accounts Committee.

4.

Acting early to avoid crisis – shift public money towards early intervention

There is so much evidence that acting early avoids expensive crises that it only
makes sense to invest a bigger slice of our public money.

 

Our support services are struggling and many are reaching breaking point, people are not getting enough support,  getting support to late or simply getting none.

Investment is needed in early support and intervention and it is needed now.

A stitch in time is asking you to Take action Now. 

Visit the website and help protect children from crisis.

 

 

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Together we can raise our voices louder.

So join me each week writing about what has touched you enough to speak out about.

Share news, campaigns, petitions and so much more.

As a community we can support and encourage one another.

After you have linked up visit at least one other blog of those who have linked up.

“Throughout history, it has been the inaction of those who could have acted; the indifference of those who should have known better; the silence of the voice of justice when it mattered most; that has made it possible for evil to triumph. “

Haile Selassie

Lets do this ……..

 

 

Speak Up on FGM.

Writing this blog and others for the last 8 years has granted me many opportunities.

I have been lucky to experience some wonderful moments and make some fantastic friends.

Still one thing I am really grateful for in this online space is the freedom to use my voice, to share my passions, my beliefs and my heart.

Yet having such freedom should never be underestimated or undervalued when still in many places in this world many do not have this opportunity or freedom.

So with this in mind I am creating a new weekly linky called “Speak up” I want us all to come together and use our voices to speak out about things we are passionate about, those we wish to change and those we wish to support.

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Together we can raise our voices louder.

So join me each week writing about what has touched you enough to speak out about.

Share news, campaigns, petitions and so much more.

As a community we can support and encourage one another.

After you have linked up visit at least one other blog of those who have linked up.

“Throughout history, it has been the inaction of those who could have acted; the indifference of those who should have known better; the silence of the voice of justice when it mattered most; that has made it possible for evil to triumph. “

Haile Selassie

Lets do this ……..

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This week I am Speaking Up about FGM or in its full Female Genital Mutilation.

What is Female Genital Mutilation (FGM)?

FGM is when parts or all of the external female genitalia are removed or injured for no medical reason.

It is also sometimes referred to as female genital cutting or female circumcision. There are no health benefits to FGM and it is recognised internationally as a human rights violation.

Female genital mutilation is classified into four major types:

Type 1 – Clitoridectomy: partial or total removal of the clitoris (a small, sensitive and erectile part of the female genitals) and, in very rare cases, only the prepuce (the fold of skin surrounding the clitoris).

Type 2 – Excision: partial or total removal of the clitoris and the labia minora, with or without excision of the labia majora (the labia are “the lips” that surround the vagina).

Type 3 – Infibulation: narrowing of the vaginal opening through the creation of a covering seal. The seal is formed by cutting and repositioning the inner, or outer, labia, with or without removal of the clitoris.

Type 4 – Other: all other harmful procedures to the female genitalia for non-medical purposes, e.g. pricking, piercing, incising, scraping and cauterising the genital area.

 

Its hard to get your head around isn’t it.

 

Honestly I read this and still cannot accept or understand why this is still happening.

I was actually talking to a friend a week or so ago and somehow we got onto the subject of what injustices we struggle with in this world today. When I mentioned FGM she asked in which countries that this still happened now. She was shocked when I replied here in the UK.

My friend like many others were under the belief that this abuse had been outlawed here in the UK. The fact that FGM has been illegal here since 1984 would allow you to believe this.

But you would be wrong.

A  local Birmingham hospital has dealt with 1,500 cases of FGM in last five years.

This means that six victims have been treated each week.

The fact that this is illegal seems to have no effect on the amount of mutilations occurring.  In 2014 regardless of the rise in hospital cases and reports given to the police there was not one single conviction in the UK.

This is appalling, even the fact that since 2003 anyone taking a child out of the Uk for the barbaric practice could face up to 14 years in prison has not slowed down the rate.

In fact The Female Genital Mutilation Act 2003 makes it

•illegal to practice FGM in the UK

•illegal to assist a girl to mutilate her own genitalia

•illegal to take girls who are British Nationals or permanent residents of the UK abroad for  FGM whether or not it is lawful in that country;

•Illegal to aid, abet, counsel or procure the carrying out of FGM abroad;

An offence under this act has a maximum penalty of up to 14 years in prison and/or a fine.

Yet still no convictions.

Girls as young as five are being subjected to this heinous act.

Let me share with you some more figures.

60,000 girls under 15 are at risk of FGM in the UK

137,000 girls and women are living with the consequences of FGM in the UK

Over 130 million girls and women worldwide have undergone FGM

FGM is practiced in more than 29 countries across Africa, parts of the Middle East, South East Asia and countries where migrants from FGM affected communities live.

This needs to stop.

So that is why I am Speaking Up this week against FGM in hope to raise public attention to the fact that this is still happening right now in 2015.

Speaking up to support organisations like Forward UK who are working hard in the UK, Europe and Africa to safeguard girls at risk of FGM and support women affected.

Speak up against FGM with me.

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Join in with my new weekly link up and Speak Up for something that moves you and don’t forget to go visit the other linked up. blogs

When we speak we are afraid our words will not be heard or welcomed. But when we are silent, we are still afraid. So it is better to speak.

Audre Lorde

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Newlife- Making a difference

A number of years ago Alan and I were parents surviving on little or no sleep. This wasn’t due to the demands of a newborn as you would expect but because of our severely disabled daughter and her severe epilepsy.

Every night we faced the dreaded pounding of the cot sides as our daughter whacked her arms ravaged by a seizure.

We were in desperate need of a specialist bed but the words “not funded” were becoming the norm.

Well that was until the community nurse asked us if we had heard about a charity called Newlife Foundation for disabled children.

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Well we hadn’t but they soon became known to us as the ones who gave us our first night sleep in years.

So now ten years later when I was asked as a blogger if I wanted to go behind the scenes and learn more about the charity I jumped at the opportunity.

So this is me telling you about the amazing charity known as Newlife.

Since its beginning in 1991 Newlife have kept at their heart the needs of disabled children and their families.

Raising funds to support and advocate for disabled children and terminally ill children across the UK.

Newlife is rather unique its its fundraising “actually earning most of the funds needed by operating a successful recycling company which offers environmentally sound services to major retailers, manufacturers and brand holders from across the High Streets of the UK sf increasingly in Europe. All profits from this recycling company are donated to Newlife.”

My girls and I take advantage of this recycling company getting some great bargains.

Newlife are a fantastic charity and offer support and guidance with real compassion. After only spending a few hours with the staff I could see and feel the passion for what they do.

They have four key national activities.

Nurse Services

A free national helpline which supports and informs families. Its confidential and trusted. Nothing is too important or trivial to discuss with a Newlife nurse.

A Newlife nurse can help discuss the grants needed for essential equipment and progress those which may be funded straight from Newlife funds or help provide information of grants available nationally from other sources.

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The nurse service has provided families with a professional listening ear since its origins in 1993. Since 2004 the service has directly helped over 35,000 people at the number of families continue to grow.

I know I have spoken to friends who have disabled children who tell me that this service has been a lifeline for them. Even when they cannot physically help, their kindness and willingness to listen has really supported them. One friend told me that she was at rock bottom and it was a Newlife nurse that lifted her up.

Personally I think this is an incredible service and one I know is highly regarded in the disability community.

Equipment Services.

One of the biggest issues when raising a disabled child is the cost of equipment. This is a major area of a families life and can effect everyday. The constant battle to get what your child needs is something I am so aware of. The time needed for assessment through statuary services left us struggling every night for a number of years only to reach the end of the assessment to find that although they agree there is a need they do not have funding left us exhausted and in pieces.

This was when Newlife came to our rescue and to the rescue of over 7000 children nationwide.

I really want to state that the equipment I am talking about isn’t just added extras that would make our children’s life brighter. It is vital equipment that is essential to a disabled childs life.

These have included pain relieving beds, wheelchairs, communication and other aids.

Newlife grants have funded over £10 million in equipment changing the lives of disabled children and their families all over the UK.

We were one of the families that was helped right at the beginning. On my visit I found out that Olivia’s bed grant was number 147. I cannot describe in words the impact that having a bed that protected my little girl when she slept when she seizured made to us as a family. To be able to sleep without fear was such a gift to us. To able to sleep without hurting herself made such a difference to Olivia.

Newlife also offer an amazing ‘Just Can’t Wait Service’  this provides loan equipment to terminally ill children nationwide. This is an incredible service as it has allowed terminally ill children to be cared for at home rather than in hospice. As one who knows the importance of every second counts I know this loan scheme has really blessed many families.

Newlife also offer a ‘Play Therapy Pod’ scheme this is the free loan of specialist development toys for families who care for a disabled or terminally ill child. Each pod consists of a variety of specialist toys that suitable for the age and ability of the child. Some of the greatest teaching can be achieved through play, so again a fantastic service.

Medical Research

This was a something I was not aware that Newlife were part of so I was extremely surprised and encouraged to learn that over the years Newlife has funded over 220 research projects at over 50 leading institutions around the UK funding around 15 million in research.

Can I get a collective WOW.

Chatting to the staff from Newlife it was evident that they were really passionate about this area hoping that one day grants won’t be needed as treatment and cures for disabilities will be so advanced.

I know I too have this hope.

Let me show you some numbers

15 million invested in child health medical research

70 young doctors directly supported through investment in research training, leading to improved child care and research.

50 genes identified, through Newlife research, aiding diagnosis and treatment.

220 grants funded for pioneering research.

59 The number of leading institutions where Newlife has funded medical research.

How amazing are Newlife !!

Campaigns & Awareness

Raising a disabled child is hard work there is no way to hide from that but at times what makes it worse is the constant battles we face just to get the help that we need. Newlife listen to parents and carers and take these messages, these struggles to the policy makers through their campaigns and awareness activities. They have become the voice of the families on important issues and they have helped to overcome the isolation many face.

As a leading charity Newlife are often consulted by Government on major issues around healthcare, services and policy. They also liase with local authorities and local health care providers to ensure policies regarding provision are fair and reasonable. The excellent relationships they have with these professional bodies allow them to raise awareness about the needs of children and their families.

 

Seriously I attended my visit to Newlife believing I knew most of what they did as a charity but honestly I hadn’t a clue. The work and the people they support is simply marvellous.

On my visit to their superstore the staff at Newlife asked me for two things.

Firstly and in their words ‘most importantly they wanted me to raise awareness of what services they offer. They honestly wanted more families to be informed about how they can help them.

Secondly like every charity they need our help. They need people to come forward and support the charity and help change the lives of disabled children and their families.

Newlife receive no government funding so every equipment grant, every research grant and every policy change has been funded by their supporters. So obviously the more support they get the more difference they can make in the lives of children and their families.

They have a great number of ways you can support them.

Visit the Newlife stores

Run a marathon

Hold a cake party

Host one of Newlife’s Sparkle parties

Be part of Newlife’s annual Santa Dash

Leave a legacy gift.

Visit the Newlife’s Facebook page for more ideas on how to get involved.

There are seriously so many ways you could get involved. Get your workplace on board, your school.

Every penny raised makes a difference, I know this personally. Newlife gave our family peace of mind. We could finally get some sleep knowing that Olivia was safe from harm. I cannot stress how much that meant to us.

Newlife is an incredible charity and although this is a rather a long post I haven’t touched on all they have to offer.

Over the next few weeks I will be continuing with a series of blog post regarding Newlife. I want to share some of the fun ways that you can support them.

So stay tuned there is more to come.

Lastly I want to leave you with a short video that really shows how much Newlife changed our lives.