It’s your fault

Having a child with disabilities means I often find myself meeting with professionals who are supposed to be in place to support and guide me and make sure my child’s reaches his full potential. I use the world supposed because sometimes and some would say often this doesn’t happen.

I have met some amazing people who are incredible at their jobs and I have met some doozies who seriously need to either consider a career change or at least attend a training course on compassion, respect and understanding.

Yet thankfully I have never come across one like the one my friend has met this week. My dear friend is at breaking point she adores and loves her child with every breathe she takes but after literally sleeping for less than three hours on a good night for the last how many years she is broken. After asking again for the numerous time for a little support and respite she actually told a professional that she is close to breaking, she is physically and emotionally on her knees. To which the so called professional replied “well how is that going to benefit your child, you have a responsibility to keep yourself well for your child”. What the **** seriously I’m not sure how my friend stayed calm in this situation without demanding a manager or someone at a higher level but she did (I actually think she is just too tired to fight anymore). Yet how, just how can a someone say this, it’s not as if my friend wouldn’t love a good eight hours sleep each night, the chance to spoil herself and have a haircut, a night out on the town with the girls. She would desperately love this but as a sole carer, her child has and and always will be her priority. How is her exhaustion her fault?

I’m sorry but do people really believe this ? That parents of children with disabilities just cannot be bothered to take care for themselves.

Let me give you a little breakdown of my day,

It’s starts pretty much where yesterday finishes, I have medication to give at 12am, 6am, 8am, 12pm and 6pm. I also have an overnight feed to prepare from 12am till 7am, also another 8 Bolus feeds to give throughout the day.

I have a minimum of 10 nappy changes each day with all nappies weighed and recorded.

My child sleeps maybe 3 hours max at a time needing comfort, moving and generally loving throughout each night and that’s on a normal night. This can double or treble if unwell in any way.

To leave the house, besides feeding, changing and lifting my child into his wheelchair I also have to pack feeds, meds, and emergency protocols and emergency meds. I cannot ever just wing it and just grab my handbag and leave. His life depends on me carrying the medication he may need.

Let’s also realise that normal chores are often doubled or tripled, washing for example does not consist of the normal one outfit a day but the numerous we need from unexpected changes, sheets bedding etc etc.

Add to this caring for my child’s needs, dressing him, bathing him, moving him, lifting him and of course playing, amusing him and loving him.

Oh I almost forget I’m also my child’s personal assistant arranging, rearranging and chasing his numerous medical appointments, the EHCP paperwork, ordering his medications, his equipment and so on. I’m also his advocate fighting for the things that he needs to live with a quality of life he deserves, his voice and his fiercest defender.

So please tell me where or when I am supposed to take care of myself? And guess what I have a supportive husband, great older children and actually a care package that is working for me. For a professional to suggest my sole carer, 4 hours each month respite friend literally is bringing her ill health on herself makes me see red.

Times are hard, right now we have a government that believes everyone can make do a little more, well everybody besides the top 1% of course. My friend already has to make choices between sleeping and eating but hey I guess she can make do a little more. I mean who needs food? She loves and adores her child and so wants the best for him but all she was asking for was a little compassion and support, is that too much to ask?

If she does break and her child goes into a residential facility where he will need 2 carers to support him at all times he certainly will be costing this government so much more.

I actually didn’t know what to say to my friend when she told me what had been said, part of me wanted to go in kicking and screaming and demanding an apology for her. Yet I’m realising the problem is a lot wider.

When you have train companies believe it’s ok not to make trains accessible for disabled people, when you have superstores using disabled children for advertising whilst depriving them of the basic facilities to have their care needs met, I realise this world needs to change.

When you live in county where almost three quarters (72%) of carers have said they had suffered mental ill health as a result of caring, while well over half (61%) said their physical health had worsened.

You know things have to change.

I welcome the news released yesterday that a joint report by two Committees of cross party MPs, the Housing, Communities and Local Government and the Health and Social Care Committee, calls for new contributions from individuals and employers into a dedicated fund to be ringfenced to help pay for the growing demand for social care in the future. Highlighting the immense strain that the current system is under, including families providing unpaid care, the MPs have proposed a series of measures including a new “Social Care Premium”.

But there is a long way to go..

Figures released by Carers UK show that

1 in 8 adults (around 6.5 million people) are carers

By 2037, it’s anticipated that the number of carers will increase to 9 million.

Carers save the economy £132 billion per year, an average of £19,336 per carer

Over 3 million people juggle care with work, however the significant demands of caring mean that 1 in 5 carers are forced to give up work altogether.

Carer’s Allowance is the main carer’s benefit and is £64.60 for a minimum of 35 hours, equivalent to £1.85 per hour – the lowest benefit of its kind.

People providing high levels of care are twice as likely to be permanently sick or disabled

72% of carers responding to Carers UK’s State of Caring Survey said they had suffered mental ill health as a result of caring.

61% said they had suffered physical ill health as a result of caring.

Over 1.3 million people provide over 50 hours of care per week.

Again I will stress there is a long way to go.

Yet how hard or how little would be needed for those professionals in the lives of carers to actually think before they speak. To actually show compassion without passing judgement.

My dear friend hasn’t the energy to ask for an apology and right now is literally holding it together in her words “with Gods grace and the love of my boy”. But how many more are out there struggling feeling alone and broken?

I know how hard it gets and as I have said I am one of the lucky ones.

All I hope is that change will come but until then if you are struggling, if you are feeling alone please get it touch because none of us can do this alone but together we can and will make it.

#BeBoldForChange – International Women’s Day

Today is International women’s day, a day where we celebrate the social, economic, cultural and political achievements of women. But also a day which marks a call to action for accelerating gender parity.

This years theme is #BeBoldForChange. A challenge for all to take a bold step towards achieving gender parity.

Being a mom to four girls it was obvious from an early age that it would be a fight to get them to not fall into a stereotypical box labelled “roles for woman.” That from school sports to toy adverts everything seemed to try and define them from an early age. 

I didn’t want this for them I wanted them to know that with hard work and determination anything was possible. That gender roles were a creation of society, not a must be. That being a woman is wonderful thing but should never be the reason to allow the world to treat you unequally.  

It’s far from easy being a woman in today’s society, whilst the barriers are falling they are taking their time. Woman are taking some of the top jobs in this country we only have to look at our current prime minister yet many woman are still having to make sacrifices that men would never consider.

Have you ever asked a man if he wants a “career or a family?” Probably not because for men the two are not mutually exclusive. Yet for a woman they often are.  

#BeBoldForChange. 

I want my daughters to be bold in all they do. To reach for their dreams, to become who they wish to be, not what society tries to conform them too.

I want a world where violence and sexual assault is never about what the girl wore or how much she drank.

A world where who they love is not judged. Where love is love regardless of sexuality.

I want my children to grow up in a world where every girl has the right to an education. 

A world where no man ever has the right to beat his wife and marriage is about love not ownership.

A world where no girl is at risk of Female genital mutilation for the illusion of purity. 


A world of equal pay and equal respect.


A world with no gender bias. 

It’s quite symbolic that a 100 years on we are still in need of an International Women’s Day it actually speaks volumes. 

That it is definitely time to #BeBoldForChange

I hope and pray that in less than a 100 years time women will be able to look back and see what we have achieved whilst living in a world of gender equality. Where gender parity is a given and a world where all are treated equal with respect and dignity regardless of their gender. 

Until that day 
#BeBoldForChange

No means no

It’s not new for me to find myself p*ssed off at some tripe spoken by someone in the public eye.

Be it the fat hating Katie bitch Hopkins or the disability hating spew of Ian Duncan Smith . You can guarantee that someone will annoy me I am rather passionate that way.

But to be fair I do believe in the freedom of speech and I accept that even idiots get voice boxes, but when singer Chrissie Hynde suggested it can be a woman’s fault that they are raped I have to shout out, what the hell.

Seriously in this century and in this society we shouldn’t have to face such ignorance as this. 

Women have the right to wear whatever they wish without the fear of rape.

Also this isn’t just a women’s perspective I have spoken to many men that feel this way. Men who hate to be portrayed as creatures than cannot control themselves when faced with a mini skirt and high heels.

“Lucy Hastings, director of Victim Support, said: “Victims of sexual violence should never feel or be made to feel that they were responsible for the appalling crime they suffered – regardless of circumstances or factors which may have made them particularly vulnerable.

“They should not blame themselves or be blamed for failing to prevent an attack – often they will have been targeted by predatory offenders who are responsible for their actions.”

Chrissie Hynde seriously, you state that you feel responsible for the sexual assault you suffered. 

No and No

The only person responsible for sexual assault is the one doing the assaulting.

I don’t care if a woman walks around in underwear or naked this does not in any way make them less of a victim.

No means no.

I wouldn’t mind if the statistics actually matched up with this theory but they don’t. Sexual assault happens to all, polo necks or G-Strings. 

It happens in marriages, workplaces and it also happens to men as well. 

Over 90% of rape victims know their perpetrator.

I’m sorry Chrissie Hyde but my respect for you has just left the building. Comments like yours lead woman rights back in to the dark ages.

Would you ever say to a male rape victim he is to blame because his jeans were too tight? 

I am furious right now and I am appalled that all those who have suffered such assaults have to deal with ignorant comments like this.

I respect woman and I respect the rights of woman to wear whatever they want, when they want. 

A tight miniskirt isn’t an invitation to be raped.

High heels, crop tops don’t say yes please.

Sex should always be consenting if it isn’t it’s assault.

It doesn’t make any difference what you are wearing or what you aren’t.  

No means no. 

If you are a victim of a sexual assault please speak to someone who can help and support you.

    

http://rapecrisis.org.uk

  

https://www.victimsupport.org.uk

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.

 

 

speak up

 

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 ……..