Let’s be the friend we all need.

Over the last few weeks on social media there has been a lot of conversation about the way we talk and represent our children with disabilities. Some I have agreed with and some I haven’t. Yet I have avoided entering into the conversation as its been rather fractious and in all honesty I’m been overwhelmed by just doing life. Yet another message I’ve received today has made me feel like I need to speak up. Because when a point of view or a fear of being wrong stops people from asking for support, stops people reaching out for help, well in my eyes that’s a failing. We cannot educate or make real change in an atmosphere of fear. When the anxiety of being judged stops you from asking questions you are actively stopping progress and development.

Firstly, I want to say that being any kind of parent is hard and I can guarantee that a perfect parent does not exist. Yet for the most of us our children are our world and we wake up each day trying our best to love them and raise them to be decent humans.

Being a parent of a child who has disabilities is all this and more. Beyond typical parenting we often have to become medical experts, voices and advocates for our children.

So secondly, please be kind to yourself, life is a journey of learning. How boring would it be if we all knew everything, though believe me I am beginning to believe that some seem to think that they do.

Thirdly I just want to share my opinion, my own thoughts, maybe not unique to me but honestly it is coming to a point that I do feel that my posts need to have this disclaimer.

Anyhow I’ve had the gift of parenting a child with disabilities in two different decades and I do feel this gives me a perception of change.

When Livvy was born in 1999 disability was still very much a hush hush pity situation. The number of times someone would apologise for my child to me was appalling. You see social media wasn’t a massive thing in my world and actually it was rare to come across an image of anyone with a disability. If it was it was often a portray of limitations for fundraising etc. This made my world small, there wasn’t anyone I could celebrate my child with, in fact I think many would have preferred if I hid her away. No one talked about what she could do always what she could not.

Limitations not achievements.

This simply sucked and this was the reason I actually first started on social media in hope of changing the narrative. My daughter was a beautiful, inspiring, intelligent, amazing girl and I wanted to share and celebrate all her achievements just like I did with her sisters. So that’s what I did and slowly and surely the conversations around Olivia began to change. I stopped the pity party being the narrative of her life. Unfortunately, Livvy passed away when she 9 and a half but when we share memories of who she was they are joy filled, adventure packed, flirting moments of a life that was such a gift, such a blessing.

Still it was hard and it was a struggle and I often felt extremely lonely. I did have to hide the pain, exhaustion to keep the true joy of Livvy. It was rather a one-dimension conversation, I couldn’t risk being open in case the pity party started again.

Fast forward a decade and a bit I am now parenting Daniel in a world where yes discrimination still very much exists but it is definitely not as lonely. I love that my social media is full of children being celebrated for their differences. That disabilities are not being hushed away in a corner hiding, shame filled world anymore. That I can share a photo of a Daniel and my comments received are full of joy and celebration and the ” oh isn’t it a shame” mentality is leaving the framework of acceptance.

Yet what I really love is the community of people who reach out to love and encourage one another. Parenting is hard but fellowship and having a squad of cheerleaders chanting in support makes it a lot easier and a lot less isolating.

So where am I going with all this?

The fact that the world is more inclusive is a fantastic thing, whilst there is a long way to go for full equality believe me, I’ve seen a lot of change in the last decade. Advocating for our children is definitely what we should be doing yes the conversations regarding disabilities should be changing. People are not their syndromes, conditions or abilities. They are their hearts and minds. Yet let’s not allow this desire for equality stop the support that we give one another. Let’s not strive so much for correct terminology that we lose hearts.

The reason I have written this is because over the last few weeks I have been contacted by parents of children with disabilities who are scared to share. One had shared a family photo with a caption that caused her backlash, there was no reason. It was another’s need to educate that distracted from the truth. The photo shared was a family filled with love and laughter. Their children were all together enjoying life, making memories. That one parent is now scared to post again. Her words to me were “it feels like whatever caption I write would be wrong. I need this space to share my life, I accept the comments from people who don’t get it, but now from those who should has made me feel really low”.

Another parent asked me how she should word a post asking for some advice as she had seen others face criticism for what one had said “degrading her child”. Yet the thing is who else can she ask? It wasn’t degrading it was sharing reality in hope of advice.

You see those that live in the disability community we do have a lot to learn but our mess ups are based in inexperience, lack of knowledge and in my case often life fatigue. But we are and always will be our children’s greatest cheerleaders. We love and cherish the very bones of our babies. So, as it all forms of parenting we will screw up, but for the most part it is done with love. If our children are cross or annoyed with us when they are older, we can remind them of this and that as human beings we live to learn and as they mature I hope they realise that parenting isn’t easy and cut us some slack.

Yet as a community we need to be careful, I’m all for progression and I strive for equality for all but let’s not lose what’s special about this world we live in. Let’s love one another, support one another and be a safe place for all those trying their best in a world they wasn’t expecting. My Grandad often said “be the friend you need”.

Let’s be the friend we all need in this wonderful totally unplanned life.

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 ……..

——————————————————————————————————–

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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