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.

What can you tell me about…

One of the major issues still arising within foster care, is the lack of information given to carers.

A recent survey published by the Fostering Network, where Foster carers were asked “Are you given all the information you need about a fostered child before they move in, to look after them and others in the household safely?”

 

The survey highlights some concerning issues in the way information sharing is being dealt with, as only 9% actually said they were “always given the information needed” and 6% saying that “information sharing ‘never happened”. In fact 23% of the carers who took part; said “they were rarely given the information they needed.”  32% said “this mostly happened” and 31% were saying “they were sometimes given this information’.

 

As foster carers; we know how important it is that we have the information needed to safely care for the child. Whilst we accept that emergency placements happen with very little warning and information, this should be rectified as soon as possible.

As professionals we must be ensuring that we receive the information needed to keep both the child and ourselves safe. We need to know as much about the child as possible so that we can help and encourage them reach their potential.

 

This is an area where real change is needed. But is this really a piece of a much bigger puzzle? Does the real issue lie with how fosters carers are still viewed within the care system?

 

Clearer understanding must be shown of the key role foster carers have within the ‘Team around the child’, I love this quote from Debbie Booth a foster carer speaking at the Fostering Network’s conference 2007.

 

“If I am not a crucial part of the team who works around the child, then what am I?

 

If I am not paid for the time and skills I dedicate to the child I care for, does that mean that my time, those skills and that child are worthless?

 

I am regulated, monitored, assessed and standardised, reviewed and approved.

 

I write reports, attend meetings, submit forms, keep my paperwork in order, record my days, attend training, as well as wipe noses and bottoms, sing songs and read stories, and act as mother, teacher, taxi driver, counsellor, therapist, nurse, spiritual advisor, confidante, rule giver, cook, nutritionist, careers advisor, pillow, whipping boy, moderator, IT consultant, advocate, bank manager, librarian, encyclopaedia, legal advisor and just be there…

 

If I am not a professional, does that make me an amateur?”

 

The professionalism of foster carers is something that needs to be recognised and respected, not just within the care system, but across society as a whole. Though there is a great deal of room for growth, foster carers must also play our part, it’s essential we continue our development, undertaking relevant training and by treating all members of the care profession with the respect we so desire, and with time we will be recognised and respected for being the front line of care for vulnerable children.

 

 

My third blog post for Progress Care, read this and others over at Foster Care with Progress.

My baby is a teenager.

My baby is 13 today.

How in the world did this happen?

The cute little miss is now heading into the teenage years.

How I love this beautiful girl.

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Her sweet kind heart brightens many a day.

Her loving nature is such a gift.

I’ve watched her grow and struggle over the last few years. Losing her sister left such a scar on this precious heart. Yet her kindness and courage has been paramount on our fostering journey.

Her desire and heart to care for others is simply inspiring.

Her energy is infectious and exhausting. She throws herself into everything with such zeal. School sports teams, drama and of course singing her beautiful voice blessing us all.

I cannot believe we have reached this milestone already.

Can I hold on to her a little longer?

My beautiful new teenager, never doubt how loved you are.

Never forget what a gift you are to us and how proud we are to be your parents.

I’m excited to see what the future holds for you and so sure you will bless this world in all that you do.

I love that your biggest ambition is to help others.

Enjoy your special day my beautiful girl.

You are my baby and will always be my baby.

Love you my little wise owl.

Happy 13th Brodie Lea xxxx

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Speak life

I watched this video yesterday and loved it . The message is so simple and so true.

Words can heal.

Words can wound.

Words can make a day brighter.

Words can surround one in darkness.

Words can build one up.

Words can tear one down.

Words spoken.

Words typed.

Words in any form are powerful.

Choose your words carefully

and

Choose to speak life.

 

 

 

Walk A Mile

“Never judge a woman until you have walked a mile in her shoes”.

converse

There are many versions of the above quote but the sentiments are all the same and it’s something that’s really on my heart right now.

 I see social media full of timelines of criticism and judgement and my heart sinks. None of us anywhere at anytime knows exactly how another is feeling.

Yet we are quick to jump to conclusions.

 We need to stop and think a little.

We do not know what is happening in the lives of others so we need to learn to be more compassionate and less judgmental.

The shop assistant who is going slow may have been up all night tending to a sick child.

The driver that cuts you up maybe rushing to the hospital for the birth of his child.

There are so many things we cannot see.

Yet we are still so willing and so eager to cast judgement.

The friend that doesn’t return your call.

How easy is it to feel anger and upset.

To feel let down.

Still we need to think beyond the moment.

Does the friend normally reply straight away?

Is there a reason why they cannot?

We are viewing life from an internal perspective.  Yet to really enjoy life and be happy we need to think externally.

Think of others first.

 

When we focus less on ourselves and more on others we find that we are happier.

Remember the joy you feel when you give a gift.

The pride you feel when you help someone.

I honestly believe that loving on others is loving yourself.

Most of us wish to be nice people but it doesn’t come as easy as you expect.

Its an internal world.

Its a selfish world.

But to make it different we can only start with ourselves.

So before you react in frustration or anger remind yourself to never judge.

You never know what journey the other is on.

A woman walks with flip flops in Washington, July 15, 2003.