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Stay Up Late: Enjoy Gig Life Independently

People with learning disabilities have the same interests, passions and hobbies as anybody else, accessing them however, is sometimes a lot harder than it should be. Music lovers may miss out on the opportunity to enjoy live music, simply due to their care plan or no one willing to go along to see their favourite band. Going out in the evening to listen to music, enjoy a show or a sports match should be accessible to everyone and the charity Stay Up Late promotes the rights of people with learning disabilities to enjoy a lifestyle of their choosing.

Stay Up Late Gig Buddies

Music with Stay Up Late

Enjoying Music with Stay Up Late

Stay Up Late relies on volunteers who want to enjoy live music and are happy to go along with someone with learning disabilities to ensure they get to enjoy the same experiences as everybody else.  Stay Up Late clients are matched with volunteer gig buddies with common interest so they can attend gigs together which might mean live music concerts but could also be football matches, church services and festivals.

Many people with learning disabilities live independently of their families but they are supported in their daily life by staff. This makes late night events difficult as many staff are tied down to rotas and therefore, if they finish their shift at 10pm, staying on at a gig until 11pm is very unlikely and the individual in question may need support in getting home and therefore would have to leave too.

Leaving events at around 9pm has become the norm for many people with learning disabilities according to Stay Up Late and this is clearly an example of the unfairness and inequality people are living with, simply due to their additional needs.

Live your Independent Life

Stay Up Late wants all its clients to know they can stay up late however they wish. Their Facebook page shows a wide range of events which have attracted people with learning disabilities across the country as well as those local to the charity’s base in Brighton.

Stay Up Late also assert that in addition to their voluntary scheme, support workers should be employed flexibly and be able to work different hours to allow late night events, going out in the evening and therefore ensuring people with learning disabilities can live the lifestyle they choose. Many support workers are happy to work different hours as long as they know in advance but red tape issues often stop companies from allowing this and this is something Stay Up Late want to change.

Share Passions and Interests

Music crowd at Stay Up Late

Music crowd with Stay Up Late

In a radio interview the man behind Stay Up Late, Paul Richards, explained the importance of the shared passions in the success of his charity. Discussing events he had attended purely because someone was needed to go, he realised just how important it was to attend events with likeminded individuals rather than just someone who’s available. Gig buddies are chosen because of their close matching interests to the clients and therefore long-term friendships are formed as well as simply someone to take along to events.

It’s also important to note that all individuals who are selected as volunteer buddies are fully checked and vetted to ensure they are safe to accompany with vulnerable adults and Stay Up Late ensure safeguarding practices are followed to the letter.

Stay Up Late and Do What You Want

Stay Up Late exists to further independence. In the interview again Paul explains how rarely you see a person with learning disabilities out at night and how Gig Buddies was setup to try and create a natural and organic process of forming friendships through shared interests and push forward the message that people with learning disabilities have every right to be out enjoying an active social life of their choosing, integrating into their chosen communities.

We think the work at Stay Up Late are doing is commendable and think their efforts should be spread nationwide to allow even more people with learning disabilities to live the lifestyle they wish, unconfined by rotas and management.

All photographs courtesy of the Stay Up Late website.

Video Transcript

The video was created using the NZ Radio interview and the mp3 can be found here http://www.radionz.co.nz/national/programmes/thiswayup/audio/20152929/stayuplate-org

A transcript of the video is available below but has also been added as captions to the you-tube video.

Simon:  Stay up late is a charity in the UK that promotes the rights of people with learning disabilities to live the lifestyle of their choice. They match clients and volunteers with common interests and then they attend gigs together everything from musical concerts to sporting events and church services.  Paul Richards is the man that set up Stay Up Late and Gig Buddies.

Paul:    I don’t know what the situation is like in New Zealand, but the UK there is lots of people with learning disabilities and autism who don’t get huge amount of funded support. So what happens is they end up spending a lot of time at home in social isolation. Loneness leads to all sorts of things around you know poor mental and physical health and it’s bad for communities to have people who are you know, lonely. And so, gig buddies is basically trying to deal with that problem by hooking social isolated people with learning disabilities up with a volunteer who loves the same music so they can go out to main stream gigs or whatever tickles their fancy together. For some people that is to go play sports, watch sport, somebody wants to go to church; doesn’t really matter. Say what your gig is and we’ll find someone later to go. But, generally it’s around about music.

Simon: And the critical bit here is having some sort of shared interest in that type of music because I guess you’ve got so many genres of live music happening that matching that up it would be problematic. There would be nothing worse than I guess one music fan having to go and sit for 2 hours through some other type of music performance that they actually hated and wouldn’t’ come back for more.

Paul:    Exactly! Last year some of our advisory group and they are made up of people with learning disabilities, they decided that they’d like to go see the dancing on ice extravaganza at the Brighton Center [00:02:01] and I said to our project manager ‘oh do I have to go? I absolutely hate that kind of thing”. Because, I know that if you love that kind of thing the energy rubs off and if you don’t you just sort of sit there zapping everyone else’s energy away from them. So I would go and I would try to be professional and I would try to be enthusiastic, but isn’t it better to go with somebody who truly shares you passion whatever that is? And your right, that’s the hook. It’s about a shared interest but also from that it’s also finding new experiences as well. So if you think about the sort of thing you sit in a pub and you are sort of chatting with a mate and you tell him to check out an artist I’ve never heard of, you know, and it’s that stuff that you go back and you buy the record and you listen to it and it expands your horizon and so that’s part of it as well, but within what people are comfortable with.

Simon: So how do you find the volunteers, the buddies that are taking people out to these gigs because as I mentioned you have to be I wouldn’t say careful, but there must be some sort of selection criteria?

Paul:    Yeah absolutely. We advertise in a variety of different places so, universities, venues themselves, a lot of word of mouth, we sort of go to events you know sort of around social care and things like that and put the word out, but also people like social workers sort of spread the word as well, but everybody gets interviewed and find out more about them. Then we do, well we are required by law to do criminal background checks on everyone, and we also give them some training. During that process some people do drop out and they realize it’s not for them or they come back with a colorful police record, and if you’ve got a police record it doesn’t mean that you can’t be involved; it does depend on what it was and when it was for to be honest.

Simon: I am sure, I am sure. Now the Gig buddies is part of a broader charity that you set up called Stay Up Late which is essentially about reclaiming the night isn’t it? For I guess as you say this community of people that are a large proportion of them don’t tend to get out at night.

Paul:    There is so much stuff going on you know but I sort of sit at the pub every evening, and still where we live very few people with learning disabilities out in the evening and you know the pub is where you, well I met my mates and watch music or chat the night away and those sort of things; those natural sort of things. So that’s what we through Gig Buddies are trying to create is natural friendships so they sort of go on in their informal and hopefully they last for a long time. But yeah, stay up late started because we were frustrated, I was in a band with 3 guys with learning disabilities in a punk band it’s called Heavy Load, and we were frustrated that people were leaving our gigs just as we got on stage and it was classic spinal tap because we never ever thought that was a reflection on the quality of our performances which were an acquired taste and quite chaotic and hilarious. It was because typically people do have support, have staff who are this ridged router systems that finish at 10 o’clock at night so everybody leaves at 9 so they can be home tucked up in bed with their cup of cocoa and the staff go home, and we started challenging that saying ‘look people with learning disabilities have every right to be active social lives that we all enjoy and the stuff that defines us and makes us part of a community and they are being denied it.’ So that’s why we started it and it sort of all grown from there.

Simon: So as a Gig buddy I would join the organization and I would go through the vetting process and then I fill out some form and say ‘hey look I am really into Reggae’ or I like a bit of this or that and you would then say ‘okay look we’ve got someone over here who is interested that.’ What do I then go and pick that person up and then I am responsible for them for the evening?

Paul:    Yes, well what we do is we have sort of a matching process. Our project manager she’ll be thinking when she meets people, she’ll be looking at their musical interests also where they live because a lot of the areas we work outside of Bright and it is quite rural and we pull public transport link. So it’s looking at do people live in the next village or town along and do they have a car and that sort of thing. And then, then it might sometimes be around sex or sexuality, age, it’s a whole range of things go into the mix in time which work out as well as their musical tastes which is quite a complicated thing. But then we’ll always go and support the first night out so that they get to meet at first. And then we’ll go support the first night out. So it’s sort of set up in that gentle way, and then they can go on and develop their friendship, but we sort of, we guide people through that because we are fully aware that people have anxiety around going out with somebody with a learning disability and most of our volunteers are new to supporting people with learning disabilities. So you know we talk through maybe a few of the potential support issues. There might be that someone is anxious in crowds and noisy situations and things like that and what you do in situations where somebody’s experiencing anxiety and different things like that. Yeah, so we don’t just leave them to it we sort of… – and then we offer them ongoing support as well so if they are having some doubts or problems we’ll meet with them and chat through things with them.

Simon: Paul Richards is the founder of Stay Up Late and there is more information on our website right now.

Uniflow One Way Valve Straws

Clever One Way Valve Straws Make Sucking Easy

Uniflow Straws are a simple yet ingeniously designed drinking aid for those people struggle with sucking on a straw. Illness and disabilities can cause difficulties with both physical and oral motor skills, and people can find it difficult to maintain suction when using ordinary straws.

Many people that experience dysphagia, a difficulty with swallowing and eating, find the innovative one way valve useful. These non return drinking straws allow a pause and rest between sips. It makes it easier to drink and reduces the risk of choking on liquids.

How Do Non Return Valve Straws Work?

Uniflow one way straws use basic physics to provide a rather smart solution to drinking and swallowing with a straw.

Image of a green Uniflow Straw with liquid inside the straw

Uniflow one-way valve straws keep unconsumed liquid in the straw itself in between sips.

The basic principle is to ensure the liquid can only travel one way once suction is in place, and these non return straws feature a small valve in the base that helps to reduce air intake when in use. This then keeps any unused liquid in the straw itself in between sips.

The diameter of each no return straw is also slightly smaller than that of an ordinary straw of this size, which helps to maintain a reduced yet steadier liquid flow rate. This is ideal for those who may feel overwhelmed when drinking liquids due to their dysphagia.

Who May Benefit From Using Straws with a One-Way Valve?

There are a number of conditions where the risk and discomfort of dysphagia plays a major role in the sufferer’s quality of life. People with multiple sclerosis, or MS, can have have difficulty with swallowing and sucking. This can lead to not only coughing, choking and discomfort whilst drinking, but can then lead to further complications of health such as lung infections and dehydration.

Image of a brown-haired toddler in a sunny garden, drinking from a cup using a straw

Uniflow’s one-way valve design is ideal for teaching little ones to use a straw

The innovative design of the Uniflow one way drinking straws ensures liquids are consumed at a steady and slow pace. This helps to remove the fear of choking or coughing fits, and to provides piece of mind to those with swallowing difficulties.

Using One Way Valve Straws with Children

Straws with a one-way valve are also ideal for young children and toddlers who are learning to drink from a straw. Below is a step-by-step guide on how to make the introduction to straws more simple for children. However, the non-return valve featured in each Uniflow straw actually provides the same outcome without the need to alter ordinary straws, which is perfect for busy parents of children keen to master straw-drinking.

1. To start, cut a regular straw in half.  Not only is a shorter straw easier to handle, but it also takes less strength for a child to suck liquid from a shorter straw.
2. Dip the straw into a cup with liquid preferred by the child. Place the tip of your finger over the top of the straw to keep the liquid in the straw. Remove the straw from the cup, keeping the top of the straw covered with your fingertip.
3. Place the straw on the child’s lips at a slightly tilted down angle (so that if you release your finger, the liquid will flow into the mouth).
4. Remove your fingertip, allowing the liquid to flow into the child’s mouth. The goal here is for the child to comprehend that he/she is getting liquid from the straw.  As you are doing this, tell the child to “take a sip.”
5. Once the child comprehends the idea of getting liquid from a straw, instruct him/her to close his or her lips around the straw. When the lips are closed around the straw, release your fingertip for the liquid to come out.  You may have to provide lip closure exercises to assist the child with this skill. Pinching the lips together may help.  Stretching the lips prior to straw drinking may help as well.

Read more…

 

A Really Useful Everyday Invention

Image of a bunch of Uniflow Straws in many different colours

Uniflow No Return Straws are designed to be fun and inclusive.

The design of each one way drinking straw is simple and inclusive, with very little visual difference to ordinary straws. The Uniflow no

return straws are sold in packs of 15. Each pack includes several bright and cheery colours that will appeal to adults and children alike. The straws are also disposable, so are ideal for popping in your bag when out-and-about.

Image of a red Strawberi straw holder, holding a green straw attached to a glass

Strawberi straw holder and Uniflow straws make the perfect companions

Although these one way straws are not recommended with fizzy or thick drinks (such as smoothies and fiber supplements) they are perfect for warm drinks, juices, cordial and water whether at home or on the go.

The perfect companion to the Uniflow non-return valve straw is the Strawberi straw holder. The Strawberi is a small yet very smart invention that clips on to the side of your glass or cup, and holds your straw in place. This is ideal for hands-free drinking and keeping mess and stress to a minimum when drinking.

Customer Quote from Amazon

These straws are great. My 92 year old mother was finding it increasingly difficult to drink from a cup and didn’t have the strength to keep sucking liquid up through an ordinary straw. These just need sucking up the tube once and then the liquid stays up the tube – she is now drinking lots more liquid. Thoroughly recommend them.

To buy your one way valve straws please click the box below:

 

 

Ingenious Ideas: Wrist Straps

A customised mobile phone wrist strap

At Living with Disability we’ve been impressed by the work of @touretteshero on Twitter and in the newspapers, battling against prejudice and ignorance. We have been looking at her blog has some pretty interesting and useful gadgets if you have Tourettes Syndrome or in fact a range of conditions which may result in tics such as Myoclonus or Distonia. Some of her ideas could also be considered if you have a stereotypic movement disorder. Today, we’re going to have a look at a simple item which wasn’t designed for those living with disabilities in mind.

A mobile phone wrist strap may seem like a simple invention which helps any mobile phone user keep their phone close at bay and in most senses it is, but reading this great blog post from Tourettes Hero, you can see how useful a wrist strap would be for her situation as it would ensure the phone was safe and accessible whenever it was needed.

There are a huge range of different mobile phone wrist straps out there, as there are with most mobile phone accessories. You can find simple black ones, those that can be adjusted to different lengths and those which keep your phone firmly attached to your wrist. Whichever suits you best is dependent on your own situation and how you access your phone. A wrist strap will ensure it never goes missing or becomes out of reach and you won’t have to worry about it going missing whilst out and about. The wrist strap has been

A Smartphone Wrist Strap

revolutionised as the picture shows, so now even the newest generations of smart phone can be safely secured to your wrist to ensure you have access whenever you need it.

An ingenious idea as Tourettes Hero says and something that you wouldn’t even imagine could be such a help until you look at it in more detail and think how such a simple little thing can be used effectively on a daily basis. There is a huge range available at a range of different prices so you’ll be sure to find one which suits your circumstances. You can even use wrist straps for other gadgets including your camera. Other people might find a wrist strap for walking sticks useful or for an ipod, digital camera or purse.

Thanks Tourettes Hero for this great idea. If you think so too, you might want to look below the comparison table for exciting news about her forthcoming book “Welcome to Biscuit Land: A Year in the Life of Touretteshero”.

 

image
title NYLON 13cm WRIST STRAP LANYARD – GREY OP/TECH Cam Strap QD for Compact Cameras and Binoculars – Black Walking Stick Wrist Strap – Corded NEW IPOD NANO 6 SOFT SILICONE FLEXIBLE WRIST WATCH BAND / STRAP for GENERATION 6G 8GB 16GB – BLACK Gossip Girl – Beaded Clutch Evening Prom Clubbing Lipstick Purse Wrist Strap 3 Sizes – BLACK SILVER
price 1.29 5.70 1.10 3.99 14.99
reviews Read Reviews Read Reviews Read Reviews Read Reviews Read Reviews
link More Info More Info More Info More Info More Info
Brand Speed Trade OP/TECH Homecraft Blue Duck Shopper Gossip Girl
Feature
  • Wrist lanyard strap
  • Ideal for small mobile phone ,card readers,camera,mp3, usb sticks
  • Approx length: 13cm (excluding palstic fastening & loop)
  • # Ideal for small cameras and electronics
  • # Fits tight connection area with 1.5mm cord
  • # Mini quick disconnect offers added versatility and convenience
  • # Secures comfortably around wrist
  • # Made in the USA
Title NYLON 13cm WRIST STRAP LANYARD – GREY OP/TECH Cam Strap QD for Compact Cameras and Binoculars – Black Walking Stick Wrist Strap – Corded NEW IPOD NANO 6 SOFT SILICONE FLEXIBLE WRIST WATCH BAND / STRAP for GENERATION 6G 8GB 16GB – BLACK Gossip Girl – Beaded Clutch Evening Prom Clubbing Lipstick Purse Wrist Strap 3 Sizes – BLACK SILVER
Reviews Read Reviews Read Reviews Read Reviews Read Reviews Read Reviews
Link More Info More Info More Info More Info More Info

Search for all wrist straps

TourettesHero has a new book coming out about a year in her life called “Welcome to Biscuit Land: A Year in the Life of Touretteshero”.

With a forward by no other than Stephen Fry it looks really interesting:

Meet Jess, aka Touretteshero. Jess has Tourettes Syndrome, which means that she makes sounds and movements over which she has no control. Jess swears, she s one of about 10% of people with Tourettes who do. She says biscuit a lot, about 16 times per minute (that s 6 million a year!), and then there are the sometimes life-threatening arm and leg tics… Tourettes can be tough to live with, often bringing out unpleasant behaviour in people who don t understand it, but it can also be inspiring and, above all, funny. Jess s verbal tics are often truly surreal Leisurewear Velociraptor Training Party! , Capital letters talk to themselves at night or If all the hoofed animals could count there wouldn t be a banking crisis. These excerpts from Jess s personal blog follow a year in her life and the whole spectrum of her experiences. We re introduced to her support network of close friends, including Fat Sister, Leftwing Idiot and King Russell, as well as strangers who can be unpredictably helpful or hurtful. Moving, funny, shocking, tender, and inspiring, Jess s words are courageous and optimistic in the face of the major challenges she faces. Welcome to Biscuit Land.