Wednesday 1st February 2017
I have been attending the Starfish Project, a speech therapy programme in East Sussex, since August 2012. It is there that I learnt, and continue to work on, a coastal breathing technique, a short deep breath taken from the chest every three to five words whilst maintaining eye contact. This technique helps alleviate and control my stammer – although like many things stammering-related, nobody really knows why this works!
The Starfish Project, run by Anne and David Blight, has helped increase my confidence and gain better control over my speech – without Starfish, I doubt I would have had the confidence to join the Youth Panel at Action for Stammering Children!
Anyway, background over, and fast forward to a couple of months back – David at Starfish rang me and asked if I wanted to be interviewed for a Daily Mail article about stammering. This would discuss my journey through Starfish and that of a fellow Starfish ‘graduate’. Of course, I accepted, and took part in a pretty lengthy telephone conversation talking about my time at Starfish, my return visits to work on my own speech and helping teach other stammerers the technique. We also talked about other things such as my time as Head Boy at my secondary, and my time on the ASC Youth Panel so far – including my speech at the Palace of Westminster! It was a great opportunity to talk about Starfish, stammering, and ASC – and the article was featured in the health section of the Daily Mail on the 14th February!
A day later, I had another call from David Blight – BBC Radio Essex had seen the article, were really impressed, and wanted me to come in to the studios and give an interview! This was a real surprise and a great opportunity to spread awareness even further. So, last Friday, I headed down to the BBC Essex Offices in Chelmsford, and took part in a 10-minute radio interview with Ronnie Barbour.
I won’t deny that the nerves were there both as a stammerer and someone who had never been on radio before, but I used the costal technique as best I could, relaxed as best I could, and tried not to say anything stupid!
Fortunately, it went well and I had a great time spreading the word about stammering. Then, I went with the Social Media Officer at BBC Essex to record a short video relaying a lot of the same points made during the interview, the video of which was later circulated on Facebook, and has now racked up 35,000 views! You can see the video here:
This just goes to show the public interest which stammering has, and the positive thoughts and feelings people have about stammering. One thing I talked about at the radio station was that stammering doesn’t have to hold you back – and my time at Starfish and ASC are what prepared me to stand up and spread some awareness about all things stammering. I may never be lucky enough to do anything like this again – but I’m happy I took the jump, got involved and did my best – because you can’t let your stammer control you – however hard that may be!
ASC Youth Panel
At the Michael Palin Centre parents often tell us that Christmas can be a tricky time for their child who stammers – they may have been progressing well in therapy and then the stammering increases for no obvious reason over the Christmas period.
The first thing to say is that parents don’t cause stammering and we can only guess at the reasons for the changes that happen, but there are some common sense possibilities that can be addressed relatively easily, as follows:
Excitement: it can be fun to build the anticipation of Christmas, but this excitement can also result in a child becoming hyped up, speaking more quickly and potentially stammering more. Maybe a measured, calmer approach would be a good idea this Christmas.
Sleep deprivation: we often relax bedtime rules at holiday times and allow children to stay up later (despite the fact that they still wake up at the same time). Children may be already tired at the end of a term in school or nursery. Parents often say that children stammer more when they are tired, so insufficient sleep over several days might be having an impact.
Busy, full households: visiting friends and relatives may be fun but they also mean there are more talkers to compete with. This might be harder for the child who stammers, so some quiet, one-to-one time might be helpful. And while visitors are staying we could try to balance things by also getting those relatives to take turns to talk!
Different routines: some children like a predictable routine and this typically will change at Christmas, in terms of mealtimes, bedtimes, even where they are sleeping. Sometimes it helps to prepare a child ahead of the changes, so they know what to expect.
Illness: a child who is feeling unwell may also struggle more with talking, so don’t be surprised if you hear more stammering when your child is poorly.
These ideas may be helpful for your child, so do experiment. And one last thing – we know that a child’s stammering ebbs and flows, so even if you do notice more at Christmas, there is a good chance that things will settle down again when life returns to normal.
For some useful tips on helping your child please see http://www.stutteringhelp.org/content/7-tips-talking-child-who-stutters
Head of the Michael Palin Centre
Youth Panel Meeting – 5th November 2016
Another Saturday and another successful meeting for Action for Stammering Children’s Youth Panel. Now over a year since our first meeting, seven of us from up and down the country met at a new location in Central London. LRW Tonic had kindly invited us to hold our meetings at their new offices in Old Street.
At 1pm on Saturday 5th November we began our sixth meeting. After a short warm up session, we jumped straight in to one of three conference rooms for a presentation by Zain Ghani, the eldest member of the Youth Panel. Zain discussed a variety of points with us, including roles within the panel, regional meetings, social media and Skype meetings. He then focused on our exciting, up-and-coming schools campaign, where he discussed outreach methods and the progress of our leaflets and posters – something we would come back to later on. This presentation was a great opportunity to discuss some of the future plans for the panel, and gave us all a good idea about where we were going.
After a short lunch break, we then moved into a second meeting room to record a video presentation to be shown to the Board of Trustees at Action for Stammering Children. Here we presented our ideas and progress around the website and the campaign in schools, which had been the main focus of our meetings since April last year.
Once this was completed it was time for our creative discussion, led by Seyi Matthews from LRW Tonic. We discussed various aspects of our leaflet and website design during this session, including making changes to branding and the structure of our leaflets and posters, which by now are well on their way to completion. We wrote content for our posters and discussed how this would vary depending on our target audience. Once we were happy with where the posters were heading, we looked at our website, and made key decisions about layout and design, including moving to a different platform and adding FAQ pages. Some excellent progress was made during this session, and we’re now getting excitingly close to everything being ready to launch.
So finally, to finish our meeting, we looked at our next steps as a panel. Getting the website live and completing the posters and leaflets were of course top of the agenda, but we also discussed possible press releases, designing of business cards and a possible launch event, and what this would involve.
By the end of the meeting, we definitely felt closer than ever to completing our branding and campaigns, and we all had a good idea of where we were going in the future. Another successful Saturday under our belts, we were now all looking ahead to January for the next meeting to continue progressing further, and get closer and closer to launching our work from the past year.
By Thomas Broom,
ASC Youth Panel Member
From the Youth Panel first forming in September 2015, things have begun to kick off. The Youth Panel, consisting of 15 young individuals have met six times in the last year at Tonic Insight Offices in London. From the first few initial meeting, the youth panel was introduced to Lucy Hayes (Charity representative) and Seyi Matthews (Creative at Tonic Insight) to establish the role of the Youth Panel, and to help create their vision. The Youth Panel vision is:
“To create a society where having a stammer isn’t a barrier to success for young people.” ASC Youth Panel
At first, only male members had applied and were recruited for the youth panel. All members thought it was in the best interest to recruit female members to better the panel and make stronger connections. In January 2016, the launch for recruiting young women to join the youth panel begun. As a result, three female members had joined the panel which was great!
Throughout the past year, the panel have developed skills in research and problem solving to tackle any barriers that may oppose them. The panel have also created a short facts video and are applying the finishing touches to their very own website with the help of Seyi. The panel’s social media has taken off on Instagram and Twitter by posting photos and tweeting about meetings and events. The panel have been fortunate to have a guest speaker at one of their meetings with Dr Cameron Raynes from the University of South Australia coming up to talk about his experiences with having a stammer.
The Youth Panel will be campaigning in schools to help children who stammer. The purpose of the campaign is to raise awareness of stammering in schools, and educate teachers and pupils on how stammering can affect a young person’s school experience. All panel members have encountered previous experiences with dealing with their stammer and how it effects their lives throughout school. Thus, making the panel a strong group of young people to help and give advice to those going through the transitional points through education and into the world of work.
A lot has happened in a year, all of which has been very productive and has pushed the panel closer to achieving their vision. The panel are growing stronger and will continue to grow and accomplish their aim to raise of awareness of stammering.
Monday 17th October was my first day on work experience with the charity, Action for Stammering Children (ASC). I was very excited to embark on my new mini adventure working with Phil Pyatt (ASC Chief Executive) and the other members of the charity. Once arriving in London, I met Phil who brought me to where (ASC) are based, a charity which has the vision that ‘children and young people who stammer have the same opportunities and quality of life as their peers’. The charity also help fund assessments, therapy and training, and support the Michael Palin Centre (MPC) in improving the lives of children who stammer. As I was situated in the MPC it was truly rewarding to be working here over the next three days.
On this day, an event called Stammering therapy Changes Lives was held at Speaker’s House. This building was truly fascinating! Reminding me of the set in the Harry Potter films. It felt amazing being able to work and help at an event at such a grand place. I was introduced to Norbert (British Stammering Association CEO) who assisted in handing out name tags and directing people to the main room. Norbert was a character who I found quite inspiring when speaking with the use of quirkiness and humour. My speech therapist Teresa Howarth even showed up which was a treat! In addition, I was introduced to Ben Bolton (Specialist Speech & Language Therapist) who will be leading the residential for teenagers who stammer at Bewerely Park, Harrogate, also funded by ASC. It was lovely to meet him before offering my help on one of the days of the residential in a few weeks.
After various conversations and meeting new people the speeches began with the Speaker himself introducing the event. Following on, speeches from Ed Balls, George Freeman (MP), Joe Allen (ASC Youth Panel Member), Olly Wilkinson (MPC User), Walter Scott (Employers Stammering Network), and Amanda Littleboy. All the speakers did a magnificent job of sharing their life experiences and how therapy has helped them to tackle any barriers and build in confidence. The event was a success with more meeting and talking to new people of all stammering background. Not to mention I got a picture with Ed Balls!
A great end to a great day is what I can say. It was an honour being able to meet and communicate with therapists, stammering charities and MP’s, all in such a highly reputable venue. First day of work experience was definitely a success!
Action for Stammering Children has released the results of two surveys we carried out to find out what parents and therapists think of the services available for children and young people who stammer. We were pleased with the number of responses we received to the surveys – 82 parents or carers responded, and 144 speech and language therapists.
We asked parents of children who stammer at what age they first identified a communication difficulty in their child. Over half (56%) said this was between the ages of 1-3, and 32% said it was between the ages of 4-7. Only 12% said they first identified a difficulty when the child was 8 or over. The most common difficulty children experienced at this stage was social and out-of-school activities, and attending nursery of school was the second most common difficulty.
When we asked parents about the quality of the therapy their child had received for their stammer, a high proportion of parents told us they were unhappy with the service they had received. Amongst parents who had used a therapist in their local area who specialised in stammering, only 35% said they were happy with the service. A high number (29%) said there was no service available locally to help their child. As many as 21% of parents said they had paid for private therapy for their child, and more than half of these parents said they were unhappy with the service their child had received.
In our survey of speech and language therapists, 98% said they worked with children and young people and 47% said they were specialists in stammering. We asked therapists what changes would help them provide better support to children who stammer. Therapists told us they would like more research and evidence regarding what works, and more specialist training in relation to children who stammer. They also said they would like to see more practical support for parents.
Speech and language therapists also told us they faced a number of challenges in their work including a lack of appropriate skills, insufficient staffing levels, funding issues, high waiting list, and the difficulty of working in rural areas and with multi-lingual families.
The findings of the two surveys formed an important part of a strategic review by Action for Stammering Children of our aims and activities as a charity. We want to make sure we are doing all we can to support children and young people who stammer and their families across the UK, particularly at a time when some NHS services are being cut back. We also want to do more to support speech and language therapists around the country who are providing such an important service, often in the face of considerable professional challenges. This will be the focus of our work in the months and years ahead.
If you would like to receive a copy of the full summary, please email ASC@stammeringcentre.org
Written by Lucy Hayes, Communications and Youth Engagement Manager
ASC’s mission is to transform the lives of young people who stammer, and so we believe that they should be at the heart of everything we do. In October we set up our Youth Panel to give young people who stammer a voice on the issues that matter to them, and give them the opportunity to have their say on what ASC should do to help more young people. After the initial round of recruitment, the panel consisted of 10 great young men aged between 12-21.
Now after a second round of recruitment specially for young women, we now have 5 new members of our Youth Panel, who all talked passionately in their applications about why they wanted to join.
Alex, aged 13 said she joined “to make decisions to help people to understand what it is like to have a stammer and how to cope with a stammer.”
Maya, aged 19 said “I am committed to helping people who have a stammer, and can apply my drive and enthusiasm to the Panel.”
Emily, aged 18 said “I think that raising awareness of stammering through campaigns is equally important in reminding young people that they aren’t alone, and I think social media campaigns are great in this way as they can reach so many people”
Becka, aged 19 said “I really want to raise awareness of stammering because not many people know a lot about it. I want to tell who stammer that they can do it!”
Sami, aged 16 said ”Joining the youth panel would be an utterly amazing experience for me as I really want to help bring a voice to others that stammer and ensure that no one else ever feels that they are the only one that has to deal with this in their everyday lives”
We are so excited to announce our new members on International Women’s day and to have a panel who are a representative voice of young people who stammer.
By Lucy Hayes, Communications and Youth Engagement Manager
Ben Cleary is a film writer and director from Dublin and his recent short film ‘Stutterer’ has been nominated for an Oscar. We spoke to Ben about making Stutterer and his Oscar nomination.
Tell us about your film-making journey- where did it all start?
Well I’ve been scribbling ideas for films and characters since I was about eight, but I finally decided to get serious about it in 2010 when I applied for a screenwriting masters to the London Film School. It was a great year and I learnt a load about the craft. From there I began writing shorts for other people to direct and finally saved some money to write and direct my own one.
Why did you choose to write a film in which the main character has a stammer?
Well I saw something online on day that stayed with me. It was a gentleman with a stutter who was speaking about his experiences. He had gotten to the point where the stutter was almost imperceptible when he was speaking to someone face to face, but once he got onto the phone, it came flooding back and he found phone calls immensely difficult. This really struck a chord with me and I began considering how someone faced with the difficulties presented by a speech impediment might navigate through life. And it is this image that opens the film. An extreme close up of a mouth struggling to get words out to an impatient phone operator. But also, growing up I had a friend who had a pretty severe stutter and I remember how difficult that was for him. So you could say I had a bit of a personal connection to the issue too. The more I explored the idea, the more excited and passionate I became about telling this story.
How did you do your research and what resources did you find most helpful?
The vast majority of my research was done online. I would spend hours and hours looking at sites and going through videos on youtube watching these incredibly brave people speaking about their speech difficulties to try to help others. I was sitting in a shared desk studio at the time and there were so many instances where I’d be watching a video and start to tear up and desperately try to hide my tears from the people sitting around me. I still don’t know if they noticed or not! But yeah, it really moved me and it still does even thinking about it now. But also, a lot of my knowledge about it came from experiences of knowing someone with a stutterer and seeing what it can be like from day to day and in certain situations.
What have you learnt about stammering through producing ‘Stutterer’?
Well, I learnt that there are a lot more people suffering with a stutter than I had been aware of. And of course I learnt some other things like the fact that it’s not necessarily just an anxiety thing or that some people find they can sing perfectly or other interesting things like that. But I think I also learnt something that I already suspected. And that’s the fact that I think a lot of people don’t really understand the issue and sometimes don’t have the sensitivity about it that they should have. Although our lead character, Greenwood, finds it impossible to communicate with people face to face, he has this wonderful inner voice that we get to hear through voice over, and he’s very eloquent and charming and witty. I was very interested in exploring this element of it, and I hope with Stutterer that we’ve represented the issue in a sensitive, insightful light and if it gets people to look at the issue in a new way, that would make me very happy.
What would it mean for you if you won the Oscar?
Well we never thought our little film could ever get this far so even being nominated feels like we’ve won you know? Winning the Oscar would of course be an indescribable honour but we’re just going to go and enjoy ourselves and see what happens.
We’ll keep our fingers crossed! Good luck to Ben at the Oscars in a few weeks time!
By Lucy Hayes, Communications and Youth Engagement Manager
In October 2015, ASC launched it’s Youth Panel who’s purpose is to represent the voices of young people who stammer. The panel is currently made up of 10 young men aged between 13-21 and in their first meeting decided that the group needed to be more representative of the stammering community.
We have decided to reopen applications for young women to join the panel, and current panel member Michael Scott wants to tell you why you should apply:
“As someone who has stammered for as long as I can remember, I know how draining it can be at times, particularly during a child’s time in the education system – and this is one of the key reasons that led to me applying to be a member of ASC’s youth panel. After seeing the promotion of the panel my mind was cast back to one of the worst times I have been through with my stammer; which was during high school and I realized that I couldn’t pass up on the chance to influence one of the most prestigious speech therapy organisations in the country, and hopefully work on a national campaign in order to increase the overall awareness of stammering not just for me; but for anyone else who had ever been in that place. One of my main issues during my time in high school was consistently coming across teachers who were unaware of how to help someone who stammers and hopefully a national campaign will help us reach the end goal – stammering people being able to thrive in whatever environment they are in. This panel has given every member the chance to make a huge difference for stammering people as a whole and to ensure that the thoughts of the people who receive the services of the ASC are deeply embedded within the organisation’s policy.
However the panel isn’t currently representing the extremely diverse community of people who stammer as a whole; in order to encompass the perspectives of all stammering young people we need to recruit more young women who stammer as this will result in the voices contributing to the policies of the ASC being a full unification of a varied community of stammering young people. The panel so far has been very fun to be a part of, the meetings aren’t all serious! The topics are important to the panel as a whole but we have fun working together in order to produce something (for example in the last meeting we worked on putting a mission statement together) and each topic usually results in some jokes and stories being shared.
To conclude, I’d like to show you this quote from an amazing article about stammering awareness day – “I imagine that for the non-stammerer, language must be a little like air, a medium so compliant that most of the time you forget you’re moving within it. But for the stammerer, speaking is like moving through water – you are constantly aware of language because it constantly resists you.” I do partially agree with this, because physically a stammer will always feel like walking through water, however in this panel we can work to change the attitudes of people so it doesn’t mentally feel like walking through water, and our own thoughts don’t stay as thoughts because of fear of how the person we are speaking to will react to stammering. The first step towards achieving this is for more young women to join the panel. ”
For more information and the application pack go to http://www.ascyouthpanel.com/