A blog for Carers

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Here at PAMIS we thought we would give the opportunity to carers to share their achievements, experiences and thoughts.  Many carers have given up their careers to care for their sons and daughters and are often isolated in their homes, however  PAMIS would like to celebrate and recognize their expertise and skills.  So please send us a line or two to PAMIS@dundee.ac.uk with a photo and we will share it on our carers’ blog. Someone out there will really benefit from hearing your thoughts and it could make all the difference.

A Message from Lauren

An Introduction from Pat, the mother of Lauren

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Pat and Lauren

I’d been thinking about trying to write a poem for a while.  I’d made a presentation for the PAMIS Train the Trainer course which I called ‘Lauren’s Blog’ and my aim was to try to see the world through Lauren’s eyes; an exercise which was enlightening and thought provoking.  A few things struck home; firstly that Lauren has a terrific sense of humour and secondly that I probably sometimes get on her nerves.

It occurred to me that it would be interesting to try to distil a presentation with slides, videos and music down into a poem.  For months, I had the phrase ‘My name is Lauren’ going round in my head and other snippets would occasionally come to me so I started writing them down.  By the time I attended the PAMIS Therapeutic Workshop a few weeks ago, I had the outline of a poem but the workshop gave me the incentive to get it into a readable form for the second day. There was much scribbling in the train on the way home on the first night.   I’ve tidied it up a bit since then and added a few more verses, but I’m done now!

I’ve never in my life written a poem before and am unlikely to ever do so again, but I was pleased to write some words which I hope will make people pause for a minute to consider how much of a struggle life for a non-verbal person, and to realise that they still have a voice even though their words don’t come out of their mouth.

“Most people do not listen with the intent to understand; they listen with the intent to reply.”

Stephen R. Covey, The 7 Habits of Highly Effective People: Powerful Lessons in Personal Change

Many people with a profound learning disability are non-verbal and so are unable to communicate by speech.  They will try to communicate with you using their other senses so if you would like to understand them, you will need to listen with your other senses too.

My Name is Lauren….

My name is Lauren.  I don’t have much to say

Some sounds and signs,  pictures cards to give away

It’s truly a journey of discovery

Who knew I’d be able to write poetry

 

My name is Lauren.  What did you see?

A wee girl with bunches and a gap in my teeth

Pretty tartan ribbons and blue dungarees

I was so cute it could make my mum greet

 

My name is Lauren. I’m not so small now

I’m a bit of a Viking so don’t mess me about

I grew up to be tall with really big feet

Very cool shoes though and smart trendy breeks

 

My name is Lauren.  My sister Jenna’s the best.

She could! But she doesn’t make me feel like a pest.

I love  when she reads me my picture books, although…

She always reads her own favourite, The Gruffalo!

 

My name is Lauren.  Did I do something wrong?

This shopping trip was lasting so very long

Those chips were just sitting on that woman’s plate

And I was so hungry I just couldn’t wait

 

My name is Lauren. On my swing I can fly

I can see treetops and birds flying by

The ground swooshing past me; the  wind in my hair

Mum shouts go slower but she knows I don’t care

 

My name is Lauren. Do I like to sing!

Disney, Singing Kettle and even some swing

It’s all in my head so you maybe can’t hear me

But I sure make some noise on my big tambourine

 

My name is Lauren.  What’s all that racket?

All sparkly like fireworks and loud as a train

It’s scary and shoots through me like a rocket

If only it wasn’t right inside my brain

 

My name is Lauren.  Where did my family go?

This house is full of people that I don’t know

No one here gets me. They can’t hear what I say.

I don’t understand why they expect me to stay.

 

My name is Lauren.  Where do all the good things go?

I’ve looked in the cupboard and under the bed

No pink pig, chocolate or my special ted

I could only find dust balls and pieces of thread

 

My name is Lauren.  I’ve misplaced my gran

They thought I wouldn’t notice. A really daft plan.

I guessed she was hiding cos she’d been gone so long

But mum brought her back with photos, stories and songs

 

My name is Lauren.  My family’s not gone at all.

I go to visit them all the time, without fail.

They’re still just down the road.  What a great big relief!

I can ride my own swing and mum still brushes my teeth.

 

My name is Lauren.  Proud that I’m a Pamis guy

Music and dancing and stories, and games to try

Swimming and skating and lots of fun in the park

Cycling with Alan until it gets too dark

 

My name is Lauren. And you’ve been really kind

Listening to all of mum’s terrible rhymes

But the moral of this story is quite clear to see

The harder you listen, the louder my voice will be.

 

 

Sibling Carers

It is sometimes hard to cope with changes.  We all face changes in life it is normal.

Adam, twin brother of Robert writing a letter

Adam, twin brother of Robert writing a letter

Adam's letter

Adam’s letter

Adam's Letter to his brother's social worker

Adam’s Letter to his brother’s social worker

Postural Care Event

Friday 3rd June, our invitation to speak to healthcare consultants and professionals at the Cerebral Palsy Integrated Pathway Scotland event

Kara and her brother

Kara and her brother

 

Frances and I have been involved in developing resources on postural care alongside other carers and healthcare professionals in Lanarkshire. Part of this work has been our postural care film and we were keen to promote this at the annual Cerebral Palsy Integrated Pathway Scotland (CPIPS) event. This was the first time that the healthcare professionals had invited speakers along from outside their field of practice.” Kate Jordan

 

Robert and his brother

 

It was great to hear about practice from across the UK on addressing the issue of hip surveillance although most of the speakers were speaking from a surgical perspective. This was really interesting as both Robert and Kara have had surgery on their dislocated hips. Lots of the presentations discussed pain and this was of particular interest too as both Kate and I have had to help our children have their pain identified. Kate and I didn’t speak until the end of the day so I think it was great way to end the event with our film. Everyone enjoyed the small sneak peek we played and we will send on the full film to all of the attendees as soon as we have this ready.” Frances Cadzow