Friday, 29 April 2022

Mummy's eyes and ears don't work well - Tia

I've been in many different situations in having to explain my condition to people but the hardest by far has been to Lidia. 

Mainly due to her age, it's hard for any typical person to understand the impacts so how can I expect her to? 

I also don't want to scare or cause her to worry about mummy. I feel so strongly about becoming a burden to anyone, never mind my own daughter.

But I've always wanted to be open to her and it's important she understands why mummy does some things differently and why I can't do everything she wants me to. 

The hearing has been quite easy to explain. I think the physical element of hearing aids and knowing they have a microphone to help mummy's hear things better makes it an easier concept to grasp. She knows to talk directly in my ears when I don't have my aids in or get closer to me when she's talking. 

The eyes is another story. I think she assumes glasses fixes my issues so it's a bit harder for her to understand. I try to break it down to simpler specific things - I need you to hold my hands as I can't see when you are far away or running fast. - You can't leave cupboards open as I might bump into them, remember mummy eyes don't work as well as yours in seeing things. 

It is getting harder as she gets more independent but still not old enough to understand. I feel like I set a lot of 'rules' to give her some way of knowing what and why we do things. I hope this will improve as her understanding improves with age. 

But saying that she has picked many things up naturally to help me, from 6 months she was picking her dummy off the floor when she dropped it as I could never find the bloody things, now she tells me when microwave is beeping, she regularly helps me find anything I'm struggling to look for and calls herself a master finder πŸ˜„ she tells me what colour things are when I need help, she even matches her outfits sometimes and better than me! πŸ˜„ she cuddles me when I have accidents/bumps and tells me I'm just a clumsy bum like her to make me laugh. 

Wish there was a guidebook sometimes, but I'm sure we will find our way together eventually and with a smile on our faces πŸ™‚

Thursday, 28 April 2022

WREN - Written by Greg

This poem by Greg was inspired by the Birdsong Talk that we held at SRSB in April 22. Our Creative Writing Group used birdsong as a theme:

I hear her song before the dawn

Her lively, boisterous shrill

From woodland thicket she doth churr

Rattle, rasp and trill


From bramble hedge and undergrowth

She warbles notes that ring

Her rattling chit and vibrant chat

With gusto she doth sing


She flits and flitters tween frosty hedge

And in bushes she doth hide

Her determined strain-strong and loud

Full throated, sung with pride


Now she’s busy, active, foraging

This precious troglodyte

Bobs and hops with neat cocked tail

Then nimbly takes to flight 


And still, she jounces, darts and waggles

Does this jenny ever rest?

Or snuggle neatly in her cave

Like a wee mouse in its nest?


I hear her song before the dawn

Her lively, boisterous shrill

From woodland thicket she doth churr

Rattle, rasp and trill 



Thursday, 3 March 2022

Usher Syndrome - Tia

 

Photo of Tia

We asked Tia who is one of our clients if we could share her post that she wrote about Usher Syndrome Awareness Day UK. This is her post (thank you for sharing Tia):


Sense org summarises Usher Syndrome as an inherited, genetic condition of which the main symptoms are hearing loss & sight loss due to a condition called retinitis pigmentosa (RP). Balance can also be affected.

 

There are 3 types;

Type 1: usually born with profound hearing loss in both ears. Balance is affected.  Development of nightblindness occurs in the first 10 years of a child’s life, progresses to tunnel vision & further sight problems due to RP.

 

Type 2: usually born with a mild to severe hearing loss in both ears. Balance is not affected. Sight loss is gradual starting from teens/early twenties.

 

Type 3: gradual sight & hearing loss, which occurs later in life. Balance can be affected.

 

I have type 2, severe hearing loss in both ears & sight loss from RP starting in my early teens.

 

Without going into the boring medical terms, what RP means for me;

- night blindness

- peripheral vision loss

- gradual tunnel vision

- I constantly see blinking/swirling/shimmering lights & black shapes

- I struggle with bright lights & colours

- my eyes are slow to adjust from dark to light & vice versa (think going from outside into a shop)

- I get blurred vision

- a few other symptom that even I don't know how to break down the medical terms into simpler onesπŸ™ˆ

 

And that's the medical facts summary... what they don't detail is how much it impacts everyday life, every decision, every move, every thought, every situation, every relationship, every dream... just everything.

 

And these are all made harder from the lack of understanding and society views on disabilities. Though it has improved  over time through dedicated organisations, Internet and social media helping people to share their stories, there is still more needed.

 

Any condition is so much more than it's medical terminology. I'm sure I can't be alone in feeling that greater awareness of medical conditions and their impacts would make life that little bit easier.

 

I've always wanted to do something positive with my skills and experience and so this is my way of contributing (however very small) to raise awareness and understanding for the condition.

Sunday, 31 January 2021

Robert’s Covid Year


Photo of Rob at SRSB
2020 started really well as I became a Grandad in February and my music trio made its debut at a local pub. As Chair of Deafblind UK, I started meeting with our Social Groups across the UK beginning with meetings in London, Peterborough and Belfast. I gave a talk to the Business Disability Forum in London and it is hard to imagine now there were nearly 200 people in the room! My band also enjoyed playing at a Valentine’s Afternoon Tea Party at Mappin Street and I enjoyed a couple of excellent hill-walks with the SVIWG (Sheffield Visually Impaired Walking Group).

The worsening Covid-19 outbreak and the first lockdown, changed everything.
The local pool closed and the SVIWG also stopped, and we’ve all missed our guided walks for over ten months now. The other thing we noticed was the quiet on the roads in the Derbyshire Peaks where we live. It was very pleasant and I was amazed how much birdsong I could hear when out walking with my wife Louise and our two dogs. All the more so as I’ve only been able to hear birds at all these past 20 years, because hearing aids have improved. As we are surrounded by sheep farms Louise often has our dogs on the lead, which makes it difficult to guide me as well. Consequently, I learnt to walk with 2 walking poles feeling my way behind her, whilst Louise warns me of rocks, tree roots, over hanging branches and steep drops etc. As we walk everyday, I got better at it and by the summer I was even able to cross the stepping stones across the river, feeling for each stone in turn. It is slower going at times but I enjoy the increased independence!

Aside from walking I have an exercise bike and rower at home to keep fit as well as a safe running route which I do twice a week.


We’re lucky to have all the essential shops including a butcher, greengrocer, pharmacy and a small supermarket, a short walk away in our local village. However social distancing was still difficult as I’m not always aware of others approaching or how far away people might be, especially indoors. Shops I know well became obstacle courses as I can’t make out floor and stop markings, so I may have skipped a few queues! Masks also make it impossible to lip-read shopkeepers and other customers, which resulted in some interesting conversations! However, my red and white cane is now a familiar sight in our village and most people know to give me space and some also lift their masks when talking, which is a great help. Our routine food shop now involves Louise popping inside each shop to pick up our essentials while the bag carrier waits patiently outside to carry it all home! I know how lucky we are as it must be much harder for those living in or near busy centres like Sheffield and Rotherham.


Socially not being able to see our two daughters, grandson and Louise’s elderly parents who all live close by, was very hard during Lockdown. I also missed playing guitar with my band and with the exception of some practise in the garden late summer, we have resorted to sharing songs and chat on zoom, like so many this past year.


Like many others we enjoyed the relaxation of rules in the late summer and meeting up with our family and some friends again, not to mention resuming my swims in the local pool. One sunny afternoon in August we even managed a picnic lunch in our garden with all our family together, a memory to treasure. Despite being able to meet up with others outside, not being able to shake hands or hug is not the same and whilst I’ve been luckier than most, the sense of isolation and not being in-touch is very real for many, particularly for those who also endure sight and hearing loss.


Being in a support bubble with one daughter meant we were also able to see her regularly over the winter months and Louise continues to walk in turn with her mother and our other daughter to keep in touch, which is great too. 


At Deafblind UK we’ve had a busy year video-conferencing without the need to travel to Peterborough but as with SRSB, it hasn’t been possible to keep the offices open and attend regular events.


Living a more solitary stay at home life meant I hadn’t travelled by train or bus or been anywhere busy since early March last year. When I popped into Sheffield by train over Christmas, wearing a mask was the least of my concerns as I’d forgotten how difficult it is to make things out inside the carriage. There were a lot of other passengers too so I needed help to find a seat. It reminded me of the importance of routine and how not travelling or being close to larger groups of people for a long time, really can impact on one’s confidence, particularly in these challenging times. It was worth the trip though, as Father Christmas gave me a very nice guitar Amp!

 

Christmas passed by pleasantly though our son was unable to join us as he lives in London and the Government announcement the weekend before meant he had to stay at home. We just had time to post his presents, so we were able to share giving and receiving gifts on-line together.


Now we are back in Lockdown again and rediscovering the quiet and a more solitary life again. The weather isn’t as good as last spring and whilst I am missing the pool again, there are some bad weather days when I miss it less! 


However, there is light at the end of the tunnel with the roll out of the vaccine and like most of us, we will follow the rules and allow the NHS to do their magnificent work. 


Stay safe, well and positive everyone, we will meet again!
Robert

Thursday, 10 December 2020

Picture Sheffield Website - Graham


Graham here! As people who know me know, I am a long term user of SRSB’s services, but I do have enough residual sight to enjoy looking at photos if they are blown up large enough. I used to be a keen amateur photographer before my sight put the mockers on this. I still have enough sight left though, to enjoy looking at photos on a large PC screen, so I still get a lot of pleasure from family snaps, scenery and more recently looking at old historical photos.


I was recently ‘tipped off’ about the Sheffield Archive which now has an extensive collection of old mostly black and white photos of the Sheffield area through the ages. It is FANTASTIC.

 

The website is Picture Sheffield and for partially sighted users, the pages and links are pretty bold and obvious and the site works with speech software.

 

If you have some residual sight and are interested in local history or just curious about what ‘old sheffield’ looked like, check it out.

 

Particular pics that I was impressed with include Chesterfield Road Toll Gate. A then rural area where B&M is now. A burning building in the city centre with an abandoned tram in silhouette I think on the high street. The Bombed out old Redgates Building on the Moor. The old Classic Cinema, one of my favourite old haunts as a teenager, burning to the ground with firemen sillouetted against the flames coming through the roof.


And particularly for me at Chapeltown  loads of photos of Newton Chambers works all gone but for a much smaller cleaner ‘Business Park’ within sight of our home.

 

One particularly relevant picture that has relevance to my earlier life is the photo of the clothing shop Tramps on King Street. I bought my first wedding suit here. Black shiny crushed velvet £9.99. I looked AMAZING!!!   .. Errrr I think....

 

Picture Sheffield is a fantastic free site to explore for you if you have some sight and for the rest of the family.


Cheers
Graham

Friday, 16 October 2020

Pattison the Ghost at Tapton Mount School _ Carol

Carol shares a story about their school ghost!

“I don't remember how old I was when I first heard about Pattison's existence but, memories of having to go down into the cellar to have showers still stick in my mind. I must have known because I never wanted to be the last one to go back up from the cellar. I remember when I had to stand in the corridor for being naughty and being scared that Pattison would come and get me. I vaguely remember it being a threat from the housemothers if we did anything wrong.

“We were all scared of the thought of him, we knew he had been there for a very long time. I don't ever remember anyone saying they had heard or saw him except for adults.”

Memories from Tapton Mount School - Carol

We recently did an online presentation about our long history with Sheffield to celebrate our 160th Anniversary. Some of our clients attended, and it prompted some memories – these memories are about the school Tapton Mount from Carol:

“I remember how big the school seemed and how the corridors echoed at night.

“I looked forward to the tape lessons when I was very little, this was wearing head phones, which were extremely big and heavy which were connected to a tape recorder. You had to Braille on your Perkins Braille machine, which was also big and heavy. Everything that the person on the tape said, for example, bag (b a g), write a line of the word bag and so on. That's how we learned our Braille.

“I loved the drama room and the musical movement things we use to do. The assemblies where we would sing hymns and I loved and the choir.

“When I first started we had to do basket weaving which I found extremely boring.

“The library was a big room that smelled funny but had many books in Braille.

“I loved going to Brownies and getting out of the school once a week to take part in the Sheffield Junior Choir's rehearsals. We did a big concert at the City Hall and Albert Hall for Christmas which was an amazing experience. That's where I first made friends with sighted girls my age.

My memories of Tapton Mount School were great, much better than my next school at Tapton Comprehensive, except for the house we stayed in called Hallam Lodge on Tapton Crescent Road.

At Tapton Mount there were kids from all over the country, and we played all sorts in our dormitories including with a football.”