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/

Advertisements

Intrepid Personal Assistant sought – job description

Great Job Opportunity for an Intrepid Personal Assistant to go on Weekend Road Trip

 

Job description:

 

  1. Fearless enough to get in the car on a Friday night and drive through 4 hours of rush hour traffic to go to Bristol for a meeting the following day.
  2. Good enough driver to do trip on own with me in the back of the car
  3. Brave enough to arrive at a hotel without having been before to check in after 11pm
  4. Still able to smile after a long journey
  5. Strong enough to lift my bags and yours straight into the hotel room
  6. Brazen enough to complain if the room isn’t right
  7. Assertive enough to ask for extras – towels, coffee, milk
  8. Positive enough to do all my personal care and have a laugh at the same time at 1130pm
  9. Organised so that when I am finally in bed, room is sorted and all my many batteries for wheelchair, communication aid, cochlear implant are charging overnight
  10. Slightly hard of hearing so able to sleep and ignore my unusual cerebral palsy night time groans and moans
  11. Early riser so can get dressed, sorted, packed up before getting me up
  12. Good at make-up and hair
  13. Fashionable and looking good – no point in me looking great if my PA has no dress sense
  14. Good at keeping on a low budget and taking me to working men’s café for breakfast
  15. Excellent time management and can get me to meeting with plenty of time to spare
  16. Plenty of stamina – able to go back to hotel, support me to get ready for a night out in a town we have never been to
  17. Not daft – orders a taxi for night on the town
  18. On the crazy side – supporting my flirting with plenty of eyeing up and chatting up guys
  19. Slim enough to take me to small loo in big nightclubs
  20. Loves music and dancing
  21. Likes staying up late
  22. Prepared to put me into bed at 415am
  23. Never complains
  24. Always positive
  25. Does not need much sleep
  26. Efficient and organised to get me up and raring to go on a Sunday without much of a lie-in
  27. Good driving skills to take us all the way back to Halifax on afternoon
  28. Likes same music as me for long car journey
  29. Arrives back and returns me to the bosom of my family safe and sound and does not breach confidentiality about what we got up to on Saturday night. My family will never know!

 

If you or anyone you know fits this job description contact me for more information

http://https://apps.facebook.com/magisto/video/a08fOAEERGs-Rg5gCzE

Independent Living Fund or bust

 

 

 

ilf

N receives a no frills basic budget through Direct Payments and Adult Social Care that pays towards a team of Personal Assistants.  The Independent Living Fund on top pays for one much needed part-time member of staff.

The closure of the Independent Living Fund has caused its recipients to stand up and challenge.  With demonstrations, discussions and debates at the Houses of Parliament, films, postcards to raise awareness, plus the 5 disabled people who are heading to the High Court appealing against Department of Work and Pensions proposals on the  22nd and 23rd October.

N has written to her local councillors to find out what is happening locally  – they have not replied.

N is seeing her local MP on Friday but I suspect that is not going to make much difference.

N has been down to London to join Inclusion London in their demonstrations showing solidarity with her disabled peers and role models.

N has been part of two films about the impact of the closure.

So, my job was to do a bit of local research and find out what was happening to the funding here in Calderdale and if it would be ring fenced.   I rang the local Authority and spoke to Adult Health and Social Care Head of Service’s Personal Assistant who said she would find the person responsible and would email me her contact details.  The email came that day with the details of a new person I had never heard of.  Perhaps the last one was beheaded.  Or, moved on to another Local Authority.  Or, given a very nice redundancy package and retired early.

I gave the number a ring.  It started off as one of those phone calls where the person with the authority uses the guilt trip first and then when that doesn’t work comes in on the defensive.

“There are others also undergoing greater cuts to budgets”   she told me, “we are an Authority whose Fair Access to Care can support people whose needs come into the Moderate, Substantial and Critical categories.”

I decided to get things straight from the beginning so I told her  “I want you to know that  I actually don’t give a shit about anyone else at the moment other than my daughter.  It is her I have contacted you about.  It’s about her independence, and her life.”   She didn’t appear too shocked at my frustration.

Then it was the old usual argument about assistive technology being there to support people in their homes – which for me is just another way of cutting support

“Assistive technology is not appropriate for a young person with severe complex needs!  She tried it.  It was a complete waste of time and money” was my response. “She needs support and Personal Assistants not an aid”.

“We will have to re-assess” she continued.

“Re-assessment is not needed.  She has been re-assessed 3 times in the last two years and has had 6 different social workers”, she was starting to infuriate me with her typical, local authority talk.

I was now in full swing and wouldn’t let her get a word in edge ways.  I wasn’t taking a breath.

“I know, as well as you do, how much it would cost to fund the right support package for N.  It is not rocket science.  It is easy to work out.  There is no point in re-assessing.  Last time she filled the form with the social worker, without us being involved, the indicative amount came out at moderate to low.  The social worker was pressurising her to sign it.  I told her not to.  She has critical needs.  It goes without saying.”

“With ILF and her Direct Payment N achieves a better quality of life through employing her own team of PAs.”  I continued “But she is worn out by the worry of her funding, the cuts, her constant recruitment of staff, she just wants to get on with her life with the right support.

We finished the conversation slightly in a better mood as she agreed to find out what was happening with the future of the Independent Living Fund in Calderdale.  She said she would go off and get an update from the Finance Department.

Later that day we got an email with this response:

Thank you for taking time to speak to me this afternoon. I have had a chance to catch up with our finance manager now and can confirm that the ILF transfer to councils will be subject to a “top slice” from government – that is to say it will be lower than the current ILF amount. Sorry to be the purveyor of bad news”. 

I looked up what top slice meant thinking it some juicy part of the Sunday Roast.  The Oxford Dictionary says: Take (part of a budget or fund) and allocate it to finance a specific project, service, etc.    That sounds like taking something that belongs to someone and using it for a different purpose.

With great respect I will be following what happens to those disabled adults who will be in the High Court next week.   For my own daughter’s future and for theirs.

“ATISHOO, ATISHOO, ALL FALL DOWN”

nads

We never 100% totally relax.  N is healthy 98% of the time.   Although if you didn’t know her and you came in on a “good day” you might well be slightly perturbed at the amount of sneezing, snuffling, spluttering that goes on.

For anyone who has experienced emergency ambulances and critical care then you will know that feeling never goes away.   Even now when I hear an ambulance I do a head count of where she probably is at this very minute and actually even evaluate which direction the ambulance has come from.  It brings tightness in my tummy.

Things seem to happen on holiday.   Five years ago N was the first swine flu victim in the North of England to be ventilated and on critical care.  It was only my mum, N, Ruth (PA) and myself staying for a long weekend back in Northumberland where we used to live before we moved to get N into mainstream school in Halifax.

We were seeing friends we had not seen for many years and were enjoying lots of reunions when she got incredibly ill very quickly.  The Old Bag at the Bed and Breakfast was more worried about her bloody sheets being covered in vomit rather than our fears that we needed to urgently get hold of Tamiflu.   Our PA was brilliant – she had already at a young age sadly had to nurse her mum who had died of cancer and with N she also went straight into nursing mode.    She has actually just got onto a nursing degree and starts in January!

Ruth took N’s temperature every half hour and when it started to go through the roof we called an ambulance at 5am (which woke the Old Bag up, ha ha).   Ironically it took N back to the same hospital she was born in – before being transferred up to North Tyneside Hospital.  We cancelled our camping holiday in the Italian Lakes and instead booked into the Travelodge near to the hospital in Whitley Bay.  Slightly different than Lake Garda.  We stayed there for 3 weeks whilst N was in intensive care with lots of visits, home cooked food and our washing done by our old friends.

After another week in hospital back home she then began college on a Health and Social Care Course wearing a bright scarf fashionably wrapped round her.  This was to hide the scars of her war wound and the tracheostomy that had been performed as an emergency procedure – and thankfully had just been taken out.  Onwards and upwards.

This year’s holiday was in a stunning villa in the hills of Cyprus.  The trauma of 5 years ago was well and truly in the past and when booking I had never even thought of length of time to the nearest hospital.

That is until she began feeling unwell on the first day.  N’s airways are the most vulnerable bit of her.  Already narrow sometimes I can hear her breathing at night like a ghost train trundling through the darkness – it is not a whistle but more like a horn blowing.   She was doing her usual bringing up the mucous, drinking heaps and bringing up even more.  Scary night.  Andy always stays remarkably calm – we both knew that if we took her down to the hospital in Pathos half an hour away they would take one look at her and want to stick a tube down her.

N remaining as relaxed as possible and not panicking is a key to keep her breathing properly.   We did not want to risk anything of course, but in any of these situations we weight up the damage of medical intervention with little understanding of her health needs by doctors with whether we can nurse her through the night ourselves.  The best way she could sleep was for us both to sit bolt upright on the sofa together with her head on my shoulder.  Uncomfortable, but it did help with her erratic and noisy breathing and when the sun came through at 5am we knew we were on the straight and narrow road to having escaped another emergency situation.   Having known people with sick kids and family members in hospitals abroad we knew this was best avoided if at all possible.

That day she took it easy and joined her brothers and sisters soaking up the much needed Greek Cypriot sun rays outside on the balcony area overlooking grape and tomato vines, apple trees, and hot chilli pepper plants.   The next few nights were easier.  By day four her lips were sore from the sun because she had not wanted to put a hat on and she lived to tell the tale enough to enjoy the rest of the holiday.

Her emergency plan for moving out of home will ensure that it takes into account Andy being on the end of the phone to reassure any nervous personal assistants who have their fingers resting on the numbers 999 ready to dial.

Back to Havoc in Halifax and since we got back I had one of the kids in hospital for removal of a boil (far bigger job than we ever imagined) and one of the others has had 4 days of stomach cramps and diarrhoea.    Typical.

BIG SHOULDERS NEEDED FOR SMALL PERSON

Big shoulders for a small person

You need big shoulders to be a parent.

In my house I get blamed for all sorts of things:

“can’t find my leotard – I put it in the wash last week and it hasn’t come out” – you can do the  washing next time

“there is no food in the house” – you can do the shopping next time

“you didn’t wake me up”  – don’t you have your own alarm clock?

“I am going to be late” – so organise yourself more

“there are no socks” – yes there are lots and they need matching by one of you kids

“I’m hungry – when is tea”  – you know where the fridge is, why don’t you make it for a change?

“You haven’t filled that form in for school”  – you get a pen, you fill it in and I will sign it.

“All my other friends mothers let them stay up late” – well go and live at someone else’s house

 

It was not in the original job description under Essential

Mother wanted.  Needs very big broad shoulders and not to take things personally

But it comes with the role.

As they get older the blames get greater and the shoulders need to be even bigger.

“I am rubbish at exams and that’s your fault.  I must have your brains and not dad’s”

“Why can’t you be like other mothers?” – oh you mean the boring mothers?

All this is getting has been getting me in training for the big punches.  I totally understand that it’s the mother that is blamed and the father (who avoids deep discussions and confrontations) is the Angel of the House, the Popular Person of the Year.   I totally understand that the kids are taking their frustrations out on me.

And better to take them out on someone who loves them dearly, who is always there for them – than to shout at their best friend, or to hit a passer- by, or swear at the bus driver, or be rude to their form teacher.  I know all that.  I can take it – well most of the time.

What is harder and what I have been practicing for over the last 20 plus years is  the big ones.

“It’s your fault I have a shit life and that I am disabled”

“I blame you for me struggling to get a job and putting it on facebook and making it sound like it’s taken me 23 years to get a job”

I am sure there is a lot worse to come.  It is a bit like a marathon  or should I say Motherthon.   I am just working my way towards it and I am less than half way round.  Pretty knackering and sometimes it takes the wind out of you.

It’s normal – my psychologist husband tells me as he continues to eat his breakfast as the words pour out of my daughter’s communication aid blaming me for her disability.    “Am I failing miserably?” I ask my husband as he focuses on eating his breakfast.  He did a PHd and studied psychology for 7 years and then tells me “It’s all normal stages of life until the kids get their full independence you will be to blame for most things”.

Time for reflection, time to look at my never ending parenting journey, time to look at how I can be a better mum.   So they can blame the dogs instead next time.  Or even their father!

TEACH YOUR CHILDREN WELL, TEACH YOUR PARENTS WELL.

 

 

teach our children

 

https://www.youtube.com/watch?v=ztVaqZajq-I

 

Many of us around the country, without thinking about it, are already keeping our young people safe by including them in all sorts of ways whether it is from joining Brownies;  going to the local park; being part of the local swimming pool; after school clubs; youth groups; getting jobs locally; or volunteering.  They are visible.

I felt that when Nadia was little she was very cute racing round in her electric wheelchair.  I also knew that she would no longer be cute when she was 18yrs old and would grow up into the world which ultimately would disable her. http://www.fairsociety.org.uk/2013/10/a-fair-start.html

We know that our young people grow up facing prejudice, discrimination, and negative attitudes and where society makes it challenging for our sons and daughters to have a purposeful life.

I had read something very early in Nadia’s life something written by Jenny Morris

It said that “disabled children who were non-speaking  were 9 times more likely to be abused than non-disabled children”.   That was enough to scare me and sent me down a road of learning as much as I could about Augmentative Alternative Communication.  That’s a big mouthful to say especially if you have a speech impairment which is a bit bizarre!   It’s shortened to AAC.   AAC covers a huge range of alternative ways to talk such as sign, symbols, gestures, boards or high tech electronic communication aids.

Part of my personal parenting mission has been that each of our 6 kids should feel nurtured and good about themselves, to feel  loved and cared for, to feel they belong, have identity, confidence and belief in themselves.  To feel proud of themselves and not be afraid to have an opinion.   That is not a lot to ask for but takes a lot of work to happen!

I know for Nadia that her resilience and her self- esteem are her essential life skills in keeping herself happy and safe.

 

So my code of being a mum has been:

  • to be there to boost her self confidence
  • to encourage her friendships,
  • to teach her about rights and justice, and the social model,
  • to introduce her to disabled adult role models and encourage her to be part of the disabled people’s movement,
  • to support her and facilitate her to be an active communicator – requiring skills from all those around her (British Sign Language and understanding of Augmentative Alternative Communication) and to “use that bloody dynavox because when you are 16yrs  I may not be around so you will need to have your own voice”
  • to know the difference between good and poor support and to know about how to run her own team of Personal Assistants
  • to teach her to say “NO” and to know what good support looks like and no way “Accept the Unacceptable” and to be able to say “fuck off” using the Dynavox and British Sign Language,
  • be included in the same schools as her brothers and sisters,
  • to feel strong enough to want to make a difference to others,
  • to feel proud to be deaf and disabled, and proud to be a communication aid user
  • to have dreams and aspirations and a can do attitude,
  • to be caring, compassionate and thoughtful to others,
  • to try not to judge others,
  • to feel part of her wider community,
  • that it is ok to make mistakes as long as you can learn from them,
  • to want to make a difference.

 

feeling proud

TEACH YOUR PARENTS WELL

It sometimes feels as if there is no end to it

 

party

 

Sometimes it feels as if there is no end to it.  We just can’t see it not happening.  It is perpetual.  Constant recruitment.  Until N gets a full time person that they are going to take on the job as a life-long role then this will always be the case.

We spend hours and hours sorting out the rota as someone has gone on holiday or is about to leave, or needs to change their hours that week.  Finding new PAs especially at the last minute is an arduous process.  Sending out emails with an updated Job Description to Universities contacts; Deaf Jobs UK;  through Facebook yet again.  It is a regular occurrence and part of our lives.

How does that make N feel?  She woke up last week in the middle of the night having a bad dream that she had gone into a Care Home.  She signed to me – what happens when you are not around?

We work  hard at keeping her spirits up and keeping her resilience going.  She goes down a slippery slope at each change of PA.   We are there to push her back up that very steep hill.

Then there is the effort of interviewing.   Being nice to people who come round and giving time and effort to each of  them – N does it all on her own with her PA.  She has set questions to ask on her communication aid but then also there is lots of casual chatting and signing.   She has to organise her calendar to make sure she is at home that day to recruit.   It is not a simple process and she seems to be going through it every couple of months.

She interviewed a very  nice, pretty, outgoing girl with great signing skills the other week called A.  We all thought she was fab.   A was going to start shadowing last week as part of her induction.  The Thursday afternoon she cancelled saying she was working late the day and would not be able to come that evening.  “Ok” we texted back “we will see you on Sunday as arranged”.   We got a text back on the Friday cancelling the Sunday.

How does that make N feel?  Shitty and angry.  Who does she take it out on?   Me of course.

It is bad enough being dumped by school friends who decide that they are too cool to be friends with a disabled person around the age of 9, 13, 15, 17 or older…..   It is bad enough being discriminated against and facing negative attitudes as part of your life.  It is hard enough remaining strong when you require people to wipe your bum for you and get you out of bed, brush your teeth, brush your hair, put your make up on etc etc.  And N requires PAs with signing skills on top.  But then to be dumped by PAs before they have even started must be incredibly tough.

Lauren wrote her blog on her experiences – http://laurenfordham.wordpress.com/2014/06/18/when-pas-move-on/

How do we support each other and more importantly how do our young people support one another?

We had friends round for a BBQ.  Our 4 young people were connected through the knowledge and insight into each other’s challenges around “independence” – there was a clear commonality.  As parents we are going to try and support our young people to keep up the contact and have a night away, somewhere accessible,  to talk and be together.   As parents we will continue to get together , have a stiff drink and share experiences to keep ourselves strong.    Yet, what are the alternatives?

When PAs move on

Fordham's Forum: On Disability, Theatre, and Life

The sun just slipped its note below my door
And I can’t hide beneath my sheets
I’ve read the words before so now I know
The time has come again for me

And I’m feelin’ the same way all over again
Feelin’ the same way all over again
Singin’ the same lines all over again
No matter how much I pretend

Another day that I can’t find my head
My feet don’t look like they’re my own
I’ll try and find the floor below to stand
And I hope I reach it once again

Norah Jones ‘Feeling The Same Way’

It is time for my current PA to move on to pastures new. And although the feelings that this juncture almost invariably provokes are familiar to me, (after 7 years of employing PAs), this doesn’t make them any easier to cope with. I feel a multitude of emotions when good…

View original post 384 more words

Our Rock of Gibralter – the Main Man in the Clarke Family

dads

 

On Father’s Day I am reflecting on the main person in our family today.

The kid’s dad.  They share the same dad which is pretty good and convenient.

He is the one:

  • Who edits my snotty emails before I press the send button
  • Who is doing all the paperwork for our audit for Direct Payment
  • Who sorts out the pay role and wages for the Personal Assistants
  • Who drives when we are abroad
  • Who sorts out all the boring stuff such as household insurance, PA insurance, wheelchair insurance.
  • Is the one that gets blamed for everything that:-

o   Should have happened but hasn’t

o   Has happened but went wrong

o   When the kids misbehave (“you are the bloody psychologist – you sort them out” – he works for the NHS as a Child                                  Psychologist!

o   When things are tricky

  • Who goes to the meetings with the social worker instead of me
  • Who used to sit there quietly at all the meetings in the early days with school when I used to rant and rave
  • Who is good at writing the very official letters
  • Who remains calm, cool and collected whilst there is Havoc in Halifax
  • Who always remembers to send flowers to both our mums on their birthdays and Mother’s Day – but who forgets to get me flowers!
  • Who is the Doctor of the family – getting splinters out of fingers, bandaging, telling me not to call 999 for Nadia and that she will come round in a few seconds, our advisor on sports and dance injuries.
  • Who helps with homework
  • Who is there as the Rock of Gibralter keeping me sane through very hard times with Nadia
  • Who persuades me not to worry/or get mad/or blame everyone else
  • Who puts up with the swearing about this “bloody person “  or that “bloody person”
  • Who reads the newspaper from back to front on Saturdays and tells me about Tim Dowling’s article
  • Who has just hung my washing out!!

Thank you Andy.thank you!

Personal Assistants – Comings and Goings

comingsgoings2

As soon as we have a team of PAs and I am able to relax with the knowledge that N is safe and sound, and well supported something happens.
If it is not someone getting pregnant, it is someone leaving to go travelling, getting a job in a school, heading off to do masters at University, or it is just time for them to move on.
It is like the earth has rumbled and we feel the eruption that is about to happen. Phone comes out of the pocket, back onto the internet to google “ PA Wanted”on Gumtree. This is inspite of our past experience and our own evidence showing us that only 1 in 4 of people interviewed for a PA job in Gumtree are suitable candidates.
having fun

Good ones include:
• H who had just left school, lived in Todmorden and was in a gap year before going to Uni.
• Deaf E who applied about 6 months before she moved to Yorkshire and came for an interview with no experience, sat on our sofa and signed away to N like they had known each other for years. She is so in love with her partner and her beautiful bump is often the centre of attention on her facebook page. Her partner D plays international standard sports for the Deaf GB team, and their egg doner lives in London.
• F came up from near Birmingham to be a live in PA one year – went home at Xmas and fell for a guy and never came back at the same time I was out of action with a broken foot.
• G lived in for a year and arrived knowing no sign language and left to work in a special school and to run the signing choir.

Going to interview these guys for sure

Deaf Jobs Uk is a good site and N is a regular contributor to their job vacancy site. We have had some very wonderful and committed PAs through this avenue. There is something about female British Sign Language signers that makes them amazing Personal Assistants.
They have the following qualities:
• Excellent communication skills both receptive and expressive
• Motivated individuals
• Want to make a difference
• Understand the importance of empowering people to have a voice
• Think on their feet
• Expressive and creative
• Intelligent
• Compassionate
• Good sense of humour (vital to work in our house)
• Led by the deaf (disabled) person
• Confident and outgoing
We have employed staff since N was 8 years old. Before that we had local girls who came and helped at tea time and the holidays. Our first ever “extra pair of hands” helped us out when N was just out of special care and was still seriously ill and very fragile. She was called A and would sit holding our sick baby next to the oxygen cylinder calm, cool and collected whilst I dashed around making tea or cleaning or looking after our 18 month old son Sean.
We even managed to get a few hours out to the pub round the corner for a much needed drink in those days thanks to A and her strength of character and her trustworthy nature. It was this good experience of being able to “let go” very early on that we have continued welcoming wonderful women who have supported N to have an enriched life and to go for her dreams.
Each of these women has given us all something very special. And N has changed their lives too. They have come and gone. Some have stayed as good friends to us all especially with N. They have seen her as a person and have believed in her, and supported her to feel good about herself in a world where many people disable her and have a poor attitude.

out on the town