White Noise

Justice for Nico

A few weeks ago on Twitter a concerned and hard working woman was talking about her job training future social workers and she used the phrase a “privilege to work with their minds and values before they are set free into practice”.  This made me think about those social workers in training, their aspirations and hopes for the future.  Their yearning to make a difference in the world and their thirst to do good.

It also made me wonder at what point their training includes treating parents of disabled children and adults as if they are a blot on the landscape?  At what point are social workers told to ignore parents, belittle them, bully them and make sure that their wishes are ignored?  At what point are they taught to act as if the words of the parents are simply white noise?

I certainly can’t imagine the woman on Twitter…

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Do I press the send button or wait and make changes?

I have not sent this email yet and had to hold back from pressing the send button.

Should I?  or what changes would you make to it?

Dear Principal
Each letter we have written has taken time, energy and is full of love and respect for our daughter.
Each email we have written has taken time, energy and is full of love and respect for our daughter.
Our risk to do what most people would never dream of doing makes us better people for the experience.  We have taken risks since the day she was born.
A head teacher told us “we have never done this before, we will make mistakes, but we want this to happen.”  He took a risk and the school was a better place for it.
Sadly, I do not hear anything from yourself, little compassion, fear and silence.   No personal response to our letters and emails is downright rude.
What a shame.
your sincerely,
Katie

My daughter My Teacher

my teacher

You teach me every day:

How to smile in the face of adversity

To bounce back when I have been slapped in the face

Patience

Love

Humanity

Respect

Not to judge

Be committed and stay focused

Be Kind

To find my inner strength

To be resilient

Accept others

Being diplomatic when I could shout instead

How to really, really listen

Carrying on regardless

How to laugh and cry at the same time

How to communicate with no words

Being fearless

Taking each step as it comes with valour and courage

To dream big and to go for those dreams

Happiness

Doing small things that make a big difference

How the world needs to change not me or you

Not to let the buggers get you down

THANK YOU FOR BEING MY DAUGHTER

Rescued at Halifax Train Station

 

What do you do when you arrive on the platform at Halifax Station from a meal in Manchester at 1030pm and the lift is broken to get up to the exit  to get in your car to go home?  There are about 30 steps up to the main hallway.  Halifax Station is relatively quiet at that time of night and is definitely not the sort of place you would like to hang around at for long.

You are with your Personal Assistant (or worse on your own) and you can’t be left on your own.  There is no attendant around.

Other than panic (which the PA did slightly – god love her!) what was the option?

  • Ring someone for help? – no number available that was emergency out of hours
  • Get back on another train and get off at another stop and get a taxi back to Halifax station to pick up the car? – worry that another station would not have disabled access. Worry that another station would have no accessible taxi rank (highly unlikely)and you would be left stranded
  • Sleep the night on the platform? Undesirable place, cold and damp and therefore not an option
  • Scream for help?

 

Luckily my daughter Nadia did not actually have to scream for too long.  A tough and rough looking stranger arrived to catch his late night train after his shift at the scrap metal merchants.   Never judge or make assumptions.  His heart was as big as his physical appearance filled with kindness and compassion.

His communication with Nadia was great.  He asked her if it would be ok to lift her and carry her to the seats at the waiting area.   When she agreed he bent down and scooped her up in his large but gentle arms telling her to hook her arm around his neck.

 

He safely delivered her to the seating area and then returned down the steps to get his equally strong mate to help him lift the wheelchair.  He was told by the PA that it usually takes 4 men to lift it at which point some rather puny, younger blokes on a night out eagerly sprinted in the opposite direction – determined to get the next train rather than volunteer their services.

 

He and his mate then carried the electric chair up the steps and right up to where Nadia was waiting.  Both were sweating profusely but still managed to smile between gritted teeth and pained expressions.   Once Nadia was happily back in the wheelchair he continued chatting away to Nadia explaining he was pretty tired due to having taken four cars apart that very day.

 

He waved goodbye to run for his train – he had no mobile phone and was not on facebook so we have to thank him via this blog and hope that someone somewhere will know him and thank him on our behalf.  We owe him a beer.

 

As he left another stranger approached Nadia and PA who was extremely friendly and confident with her communication.  She had been watching what had happened and was checking that everything was ok and if Nadia was alright.   Like a long lost friend she spent a couple of minutes talking to Nadia and then left.   We would like also to thank Julie Hesmondhalgh (ex Coronation Street Hayley Cooper) for her consideration and acknowledgement of the situation).

 

In the meantime, we are trying to get in touch with Northern Rail to find out what their emergency policy is on broken lifts.

 

stranger1

 

http://www.visitsunlimited.org.uk/strangers-in-the-night/

 

 

Not sure where we fitted in but proud to be there nonetheless!

we were here 18 years ago delivering a letter to Tony Blair.

we were here 18 years ago delivering a letter to Tony Blair.

We did not quite fit into the Disabled People’s Movement as we were marched at the front of the Anti- Austerity March with “Disabled People Against the Cuts” on Saturday June 20th down to Parliament Square.

But I am not sure where we did fit in?  It would have been great to have been there with other parents of disabled children and young people although for many this was impossible  – too hard to organise, no child care, no extra money to pay for the travel, and Saturdays are a tidying up day or a family day out day or a day to recover from the busy week.

The cuts/savings have already impacted many of us and worse is yet to come.  What a powerful message it would have been to have met up and joined together to show this present government that they can no longer take away or reduce the numbers of our Teaching Assistants, our Direct Payments, our Youth Services, our CAHMS, our benefits, Independent Living Fund, our Play Services, money for playgrounds, our Wheelchair Services and god forbid our wonderful NHS.  Many of us have kids who would definitely not be alive if it was not for the NHS.  The list goes on and will go on.

I was proud to be with my daughter Nadia, pleased to take part and to show that we care enough to travel all the way to Halifax and back – exhausting trip with gear, electric wheelchair, extra batteries for the communication aid, rain gear, sun gear, food, drink all making up our own protest survival kit.  On Friday we were at a gig in Leeds, outdoors watching Paulo Nutini who is a family favourite so were also recovering from too much fun the night before!

For Nadia it feels a confusing time – we walk on egg shells as her 7th Social Worker has clearly told her that there is no money for her to live independently.  Thanks to Calderdale Social Care topping up the ILF they will not increase her budget any more so that she can live independently.  Imagine being told that at 23yrs old when you have gone right through mainstream school, college with plans to carry on your education, get a job, have a relationship and of course leave home.

At 23 years old Nadia does not want to have to be particularly political.  She wants to understand herself, who she is, where she fits in to society, and she wants a life.  A life full of the things that 23 years olds want to do like keep learning,  hang out, go to festivals, travel and meet new people.

No one will truly understand the challenges to having a life unless they are disabled and have been through it themselves.  So all I can do is to tell her how proud I am to have her as my daughter.  To tell her she is one in a billion!  To tell her she is the most amazing incredible person I have ever met.

http://www.itv.com/news/story/2015-06-20/tens-of-thousands-gather-in-london-for-huge-anti-austerity-rally/

The night before a birthday

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The night before each of my children’s birthdays is an emotional experience.   Lots of thoughts and reflections whizz through my mind alongside many images.

As a mum of a disabled adult with  complex needs the whole birthday experience is a roller coaster of feelings and memories.   Nothing is taken for granted .

Every minute, every hour and every day is precious.  Life and our children are only loaned to us on a temporary basis.  I know too many mums who have lost their children.

The milestones we reach together are celebrated and each one feels like we have just climbed an enormous mountain. Hard work getting there but goddam worth it for the view at the top.   Enjoying the descent down  and the times that feel easier, building our resilience, but aware of the next challenge around the corner.

After having  come so close to losing a second twin baby every time I hear an ambulance years later it still brings back a shudder down my spine.     Sirens make me cold, I can feel the air being sucked out of me, my legs feel like jelly and I breathe a sigh of relief as I automatically do a double count of where everyone is, just to check we are all safe and sound.  It is a habit.

nadia5

Family holidays, days out, Sunday dinners, seeing the kids smile together, laughter, the dogs sneakily eating the chicken sandwiches, walking to school with all 6 children, camping, driving altogether in our big green van, having a house full of friends round for a BBQ, sick children coming into our bed to feel safe and loved, and cuddles on the sofa.  That is what life is about.

Another birthday comes and goes.  Another candle for Liam.  Another year of making the impossible possible.  Another year of being amazed by my daughter.

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What’s the point of a parent carer’s needs assessment?

rightsinreality

In all the excitement of Care Act Day, it is important not to lose sight of the fact that important provisions of the Children and Families Act 2014 for parent carers of disabled children and young carers also come into force today (1 April 2015).

I plan to blog about the duties to young carers contained in both the Children and Families Act and Care Act shortly. However this post aims to answer a simple question which I have been asked a number of times – what’s the point of the new parent carer’s needs assessment (PCNA) introduced by section 97 of the Children and Families Act?

One thing is crystal clear – there is no new right to services for parent carers of disabled children, as there is for family carers of disabled adults under the Care Act. What we have for parent carers of disabled children is…

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Week 1: Campaign context #107days

please take 5 minutes to wath this film.

#107days

In our last post we re-launched #107days and shared the video that captured some of the wonderful action last year. In this post we wanted to provide some further context for the campaign. The simplest way of doing that is by sharing one key document, the #JusticeforLB Audit Report, and a Newsnight feature, both produced in response to the National Audit Office report into learning disability published at the start of last month.

So, grab a cuppa and have a watch of this, it’s only 5 minutes long, but captures succinctly the last couple of years for LB’s family:

OurAudit Report is calledActually improving care services for people with learning disabilities and challenging behaviour. You can download it by clicking on the cover below, or the link here.The report examined the challenges faced in delivering key commitments of the #JusticeforLB campaign manifesto, the extent to which these…

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Hazy and unclear

haze

 

Confusing the dreams with the reality.

The dreams are hazy and unclear.

The reality is harsh to acknowledge so escape in the dreams.

The challenges are too big to climb and the cycle starts again.

Unsure, planning, discarding the plans, nothing ordinary or really tempting so dream on, dream on.

Barriers like a barbed wire fence tempting your fate

Whilst the dreams remain hazy and unclear.

 

 

The letters we wrote and never dared send

ifnotnowSo many of us will empathise with those parents who get up in the middle of the night and scribble feverishly on scraps of paper, or sit at the computer typing madly alone with their thoughts whilst the rest of the house continues to sleep. Others lie in bed awake.  Composing an email or a letter to a friend, foe, the neighbour who has ignored them, the headteacher or teaching assistant, the educational psychologist or the consultant who never gave the diagnosis.

Bringing Us Together wants to bring those letters you never dared send together.  Some of them may be glowing with pride and positivity and informing the world of the achievements of your child.  Some may be like mine – filled with pain and passion.

Whether it is in the middle of the night, first thing in the morning, or when the kids have gone off to school drop us a line with the letter that means something to you that you never dared send.

http://bringingustogether.org.uk/letters-never-sent-02/