Saturday, 13 May 2017

What is LD:NorthEast



I’ve just returned from an exhilarating black tie fundraiser at North Shields Masonic Hall, on behalf of Learning Disabilities NorthEast.  As I am a Trustee and Vice-Chair of the charity I was asked to ‘tell them where the money is going’.  Here’s what I said ...

Ladies and gentlemen welcome to our fundraiser for Learning Disabilities North East. 

Clodagh has asked me to say a few words about the charity.

It’s quite hard to say what LD:NorthEast actually does in a few words because it does so many different things for people of all ages:
From newly diagnosed babies and their parents
To people in their fifties and sixties and older whose parents have passed away and whose families may have drifted away.
Including younger people for whom education has ended and work is neither available nor appropriate.

Maybe if I make it personal ...

My autistic son is in his twenties. 
His ‘care plan budget’ covers a couple of days a week in a centre, but he likes being out and about and loves shops and shopping centres. 
I hate shopping. 
On a Friday Younus from LDNE takes my son out to do whatever he likes. 
Yes a little break for me, but more importantly the boy gets to go out and do something with someone he likes, and is closer to him in age.  No twenty year old wants to spend all their time with their grey haired old mother.

When my boy is out with Younus I go to LD:NorthEast’s Knit and Natter group. 
Ladies of a certain age with learning disabilities who get together with a couple of volunteers to knit and natter. 
The knitting isn’t that important - the nattering is.  
Once upon a time they went to special schools and day centres together -   
but changes in policy and provision, and cuts, mean those centres are no longer available to them. 
Knit and natter gives them somewhere to go and socialise with friends - something most of the rest of us take for granted. 
Other activities organised by LDNE include the Northern Notes Choir, darts, archery, dominoes, crafts, theatre and cinema trips
In fact LDNE will organise almost any activity the service users request (within reason) including short breaks and holidays. 
You name it and they’ll have a go at organising it – the staff are brilliant.

They also help with practical and serious issues like dealing with forms and official things.
Health advice and getting to the doctor, dentist etc,
Recognising and dealing with hate crime 
– almost anything a person might need assistance with.

Then we have the BBC Children in Need Early Years Play project which helps preschool children with complex disabilities learn and develop through play.
LDNE helps families deal with health and care professionals, provides group and one to one support and puts families together so that we can help and support each other.
There are playgroups, sign and sing sessions and school holiday activities which including other family members.
As the child grows LDNE is still there to help parents and carers deal with officialdom, education, social services etc

If I tried to cover everything we’d be here all night.
What I can say is LDNE has and does make a huge difference to the lives of children and adults with learning disabilities, and us parents –
And it all takes money. 
I won’t bore you with talk of local authority grants and funding, how it’s vanishing and how social services try to get charities to do more and more for less and less.
But I would ask you do dig deep to help LDNorthEast help families and people living with a learning disability to live as full a life as possible.

Thank you and have a lovely evening.

If you would like to find out more about, donate to or volunteer with LD:NorthEast look at the website

Thursday, 4 May 2017

May Day Memory



When I was a morris dancer I would dance at dawn on Newcastle’s Town Moor.  A couple of times I I persuaded Thunderthighs to come with me.  Thanks to facebook timehop here’s what happened in 2009.

Got up at 3.45, got Thunderthighs up, got coffee/gingernuts/juice and then got out to Town Moor to dance at dawn. Lovely red sunrise, real "Rosy fingered dawn has thrown the stone that puts the night to flight" (the Obayat of Omar Kayaam for the non-cognoscenti)

I’m not as erudite as I think I am. "Rosy-fingered Dawn" is an epithet from Homer's Odyssey not the Rubaiyat of Omar Kayaam.
Miss Fiddle - I wouldn't know - I'm even less erudite!
Bentonbag -  I googled
Ms Exlibris -  I don't even know what erudite means
Bentonbag - … and you a trained librarian ...
Ms Exlibris - I only put the books on the shelf I don't read them!
Bentonbag - Do you get stamper's wrist like Phil did?
Ms Exlibris -  Not any more, computers put paid to that but certainly used to. Do you think there is a condition called Librarians wrist?
Bentonbag -  If there's Housemaid's Knee, Tennis Elbow and Jogger's Nipple there certainly should be.

I’ve been wearing a dress today in honour of May Day, but am now going to change into trousers and do some gardening before it rains.
 
I’ve just had a shouting match with Fester.
Me downstairs trying to ascertain whether Felix is in or out.
Him upstairs thinking I was referring to Ferretfingers.
Culminating in him bellowing
"What's he doing out?"
and me screaming
"He's a bloody cat”



So like the homelife of our own dear Queen ...

Wednesday, 3 May 2017

St George’s Day



Even a Welsh raised Morris dancer should celebrate England’s St George’s Day.
Facebook’s time-hop brought up this interesting form of celebration

I have shaved my legs and painted my toenails to celebrate St George's Day

Ms Exlibris: Good God!  If that's what you do for St George's Day what do you do at Christmas??

Bentonbag:  Depends on the weather - with last year being so lousy I don't think they've seen daylight since last Mayday. Talk about shins like a pit-pony - I had to break out a new Bic razor.
 


Friday 24 April 2009 at 22:28 ·
LBe the BrilliantBoyMinder has confirmed she's up for Sunday so Cinderella shall go to the Baltic for St George

 Saturday 25 April 2009 at 12:48 ·
I have a dress on - it must be spring!

Have just wallowed in a hot foamy bath after dancing for St George at the Baltic

Tuesday, 2 May 2017

HOW MY CARING ROLE IMPACTS ON MY LIFE

The time has come, or rather a few months ago the time came, to review Ferretfinger's "Care Package" and today his Enablement Officer came around to fill in the part of the form about me, as a carer, and my needs.  This is a good thing but hard to face up to.  So this morning I sat down at the keyboard and wrote an essay on ''How My Caring Role Impacts On My Life".  I thought I would share it so that those who do not have a learning disabled person to care for might understand why we who do sometimes seem a bit frazzled and less than patient.



Ferretfingers, 22, needs constant supervision and is vulnerable because of his communication difficulties.  I cannot do anything without considering its impact on Ferretfingers, and I am always on alert.

When Ferretfingers is at a day centre or out with his 'Personal Assistan', then I have to ensure that either I, or another responsible adult, is at home to see him off and when he gets back.  Which means anything I want or need to do has to be timetabled between 10am and 3pm, unless his father is at home.   
This includes shopping, doctors/dentists appointments, yoga, meetings, meeting friends or anything a woman of my age might reasonably expect to do.  There is always an element of stress fearing I won’t get home in time.

When I go out with Ferretfingers then I am constantly watching him and the people around him.  He loves buying DVDs and collecting brochures, catalogues and dictionaries.  The house is full so I have to try and stop him.  This can be embarrassing, depending on the attitude of other shoppers and shop assistants.  Then there are the starers ...

If his father and I want to go to a social occasion, or just go out, together we have to arrange someone to ‘mind Ferretfingers’.  We seldom socialise together and I usually attend family events alone.  This makes me feel the odd one out and sad:  being aware of people’s pity is also demoralising.

When booking accommodation for family holidays I have to always ensure we have either a family room or 2 twin rooms.  This is so I can sleep in the same room as and supervise Ferretfingers.  Our other son shares a room with his father.  We have never holidayed outside Britain as I don’t think we could cope with airports and the uncertainties and stress of air travel.

Ferretfingers’s aural hypersensitivity means he tries to control all or any music.  We do not play music, or the piano or sing.  I now watch television using cordless headphones so that he can’t hear incidental music or adverts.

I feel responsible for Ferretfingers’s physical welfare.  I make all his appointments, accompany and speak or interpret for him at the dentists or doctors or barbers.  I ensure he puts on clean clothes and cleans his teeth.   
His father supervises bathing and hair washing.  
I do all his laundry and ironing.

When he was a small child this was appropriate and a normal part or parenting.   
This is no longer the case.