NEWSLETTERA P R I L 2 0 1 5 • I R I S H S T A M M E R I N G A S S O C I A T I O N

Irish Stammering Association

W A L K A N D T A L K S U M M E R 2 0 1 5 • A L V I N L U C I E R • W O M E N ’ S L E A D E R S H I P G R O U PR E S E A R C H C O R N E R • A T R I P T O T H E Z O O • L E I N S T E R H O U S E • I S A Y I T ! S U M M E R C A M P

his is my last Chairman’s message because I will

be leaving Irish Stammering Association Board at the next AGM in April. After two years as Chairman and a total of six years as a member of the Board I have decided that it is time for me to step down. My time on the Board was a very enjoyable one but at times a very challenging one too. During my time on the Board ISA has grown from an Association that provided support for adults who stammer to one that provides a very wide range of supports for adults who stammer, young people who stammer and their parents and those working in a professional capacity in the area of stammering. I am very proud to have been part of that development and to have

worked alongside the other dedicated men and women of the Board and staff of ISA. I want to thank all current and past Board members with whom I served. I learned so much from each of them and I thank each of them for their help and support over the six years during my various roles including member of the Board, Treasurer and Chairman. I would like to wish the incoming Board and Chairman the very best of luck over the coming year and I am sure ISA will continue to thrive into the future under their stewardship.

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I am stepping down from the Board but I won’t be disappearing altogether. I still plan to be involved in Young ISA & ISAYiT! and am keen to be part of the development of more services for women who stammer. As a minority within a minority, women account for about one fifth of adults who stammer, women who stammer can face many challenges including isolation and lack of support so I hope to find ways that ISA can support women who stammer more.As previous years 2015 is going to be a busy year for Irish Stammering Association

CHAIRMAN’S ADDRESSWELCOME TO THE SPRING 2015 EDITION OF IRISH STAMMERING ASSOCIATION NEWSLETTER.

n the 4th February ISA had the opportunity

to present in the AV room of Leinster House to inform political representatives of the impact that stammering can have on people’s lives. Jonathon Linklater, Development Manager, Michael Ryan, Board Member and Veronica Lynch, Chairman gave a 40 minute presentation after which members of the audience were free to ask questions and chat to the presenters.

IRISH STAMMERING ASSOCIATION PRESENTS AT LEINSTER HOUSEby Jonathon Linklater

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with our regular events such as our monthly support groups around the country, our women’s telephone group, Skype group for teenagers, our conference day in April and National Stammering Awareness Day in Oct. We are planning more drama workshops and camps in conjunction with the Gaiety School of Acting for our younger members. Those who took part in our presentation skills course will have the opportunity to take part in a refresher workshop and we will be running another one during the year.One of our biggest challenges this year is to secure sustainable funding for the Association. You can read in the newsletter what we have been doing to try to secure that.

If you would like more information or want to register your interest for any of these events please give us a call on 01 872 4405 or send an email to mail@stammeringirlend.ie and don’t forget to check in regularly to our website stammeringireland.ie and on to facebook and twitter for updates and lots of news and information.

I hope you enjoy this edition of the newsletter and I look forward to seeing you over the coming year at one or more of our events.

Jonathon opened the presentation by explaining what stammering is and how it can affect people. To give people a taste of what stammering is like the audience were asked to imagine how they would feel if they wanted to order a coffee but the word “coffee” won’t come out so they have to order tea instead? They were asked to imagine how they would feel if this situation happened to them every day. They were asked to imagine what it is like for a child or teenager who takes two minutes to say their name in front of their new teacher and classmates because they get stuck on the first sound in their name. The audience were asked if, as public representatives, they were to experience difficulty saying their own name how that might impact on their political career.Michael spoke about his personal experiences of stammering and how dealing with his stammer made such a difference to his life. He went on to explain how having been helped by the support of Irish Stammering Association he is committed to helping the Association provide more supports and improved services to people who stammer.

Veronica spoke about the work of Irish Stammering Association and services provided. She explained that ISA’s catchment group is much wider than adults who stammer; it includes

young people who stammer and their parents as well as professionals working in the area of stammering. Veronica also outlined the need for a sustainable source of funding for ISA and other organisations in the Health and Disability sector. There is a review in process between the Dept. of Environment, Community & Local Government, An Pobal, the Dept. of Health and HSE to establish such a fund for organisations like ISA. At present ISA is in receipt of bridging funding until the end of June 2015 from the Scheme to Support National Organisations. If the review does not result in a positive outcome and sustainable funding for ISA it is likely that our services will need to be considerably reduced.After the presentation on 4th February a number of TDs and Senators and one Government Minister have been in contact with ISA offering their support in

f you are aged between 8 and 16 we want to hear from you! ISAYiT! Summer Camps offer a place for young people who stammer to meet people and make friends with others who also stammer in a relaxed and fun environment. In conjunction with the

trying to achieve a sound financial footing.Irish Stammering Association would like to thank Senator Martin Conway and his colleague Karen Dempsey for assistance in organising the presentation and access to the AV room. It was a valuable opportunity to raise the profile of stammering and Irish Stammering Association among the decision makers in Leinster House.

ISA encourages you, our members, to get in touch with your local representatives! Contact your TDs and Senators asking for support for better services for people who stammer and for Irish Stammering Association. Let them know what stuttering means to you and how it might have impacted on you, or those around you. Contact details for TDs and Senators can be found at http://www.oireachtas.ie/parliament/contact/

WE WENT TOTHE ZOO

find out more on page eight

lvin Lucier is one of the foremost

composers of modern experimental classical music. A contemporary and collaborator with the likes of John Cage and Morton Feldman, he has performed internationally as well as holding down an academic post as professor of music in Wesleyan University. He is also a person who stutters. As well as that, his most famous piece, which is widely regarded as a classic of twentieth century music, directly involves his stuttering. I am sitting in a Room was first performed in 1969. It involves the recital of a piece of text which is recorded; the recording is then played back and the playback is recorded again. This second recording is then played back, and this playback is then recorded. This continues until the recording mutates in an acoustic drone, no longer distinguishable as speech, transformed by the resonant

frequencies of the room the recordings are made in.The score for I am sitting in a Room includes the text that is transformed through playback during the performance. It is a short text and the last two lines are of particular interest: ‘What you will hear, then, are the natural resonant frequencies of the room articulated by speech. I regard this activity not so much as a demonstration of a physical fact, but more as a way to smooth out any irregularities my speech might have’.This is a direct reference to his stuttering which is evident on the original recording as made at the beginning of the piece. However, as the piece progresses and the original recording is transformed through the playback and re-recording, his stuttering disappears into the acoustic drone. His speech irregularities do disappear but unfortunately

by David Heney

into sometime verbally incomprehensible, which explains why there are no courses offering his cure to stuttering!

He performed the piece last year in Drogheda Gaol, but I only found out about it on the morning it was on. The performance went on to ne noted as one of the cultural highlights of the year in the Irish Times end of year lists. Not bad for an eighty three year old man with a stammer.In his recent book, Music 109: Notes on Experimental Music, he refers humourously to how in the seventies, he found a lot of people were envious of his stutter. They used to tell him that they stuttered too even though it might be not be obvious from hearing them talk. He never believed that they did in fact stutter secretly and was bemused why they would want to experience all that went along with having one.

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ALVIN LUCIER

f you are aged between 8 and 16 we want

to hear from you! ISAYiT! Summer Camps offer a place for young people who stammer to meet people and make friends with others who also stammer in a relaxed and fun environment. In conjunction with the Gaiety School, workshops will be run at this successful camp in July of this year.

If you are interested in taking part in this innovative camp please call 01 872 4405 or email mail@stammeringireland.iefor more information.

Check for updates on the ISA website also www.stammeringireland.ie.

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ISAYIT! SUMMER CAMP IS BACK!

Irish Stammering Association

Irish Stammering AssociationCarmichael Centre, North Brunswick Street, Dublin 7www.stammeringireland.ie http://twitter.com/IrishStammeringhttp://www.facebook.com/stammeringireland

by Ian Hickey

A TRIP TO THE ZOO

n Saturday 10th January, Young ISA

went to Dublin Zoo! It was a very cold but bright and sunny morning when we all met at the zoo’s entrance. We had young people come from many places throughout the country and it was great to see so many familiar faces. After the essential group photo, we proceeded to navigate our way around the first part of the zoo.

Straight away our animal instincts kicked in and we found ourselves sheltering from the bitter winter air in the heated monkey house. Everyone was enjoying searching for the miniature monkeys hidden in the trees when, before we knew it, it was time to meet our first zoo keeper! Taking a route past the red pandas (which we got to see out and about

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exploring their habitat), we met up with Eddie, one of the head zoo keepers at the zoo. Eddie took us on a walk past the zoo’s new sea lion development and explained all about what was going on, before bringing us over to the Amur tiger habitat to meet zookeeper Aisleen. We were treated to our very own tiger experience and watched as Aisleen let them out into the enclosure where she had hidden some food to find, while she gave us a really interesting talk all about the tigers. We then met up with elephant keeper Brendan, who told us all about the elephant herd at the zoo. We got a real treat seeing all the herd (including the three new babies!) searching for food that Brendan was throwing them. By the time the talk was over, there were a lot of hungry faces

so we trekked off in search of the restaurant and a much needed sit down. After lunch, we decided to split into three groups to make sure everyone had a chance to see their favourite animals, while of course learning some animal facts along the way with our very own quiz sheets! Some of us were more lucky than others

with the routes we chose – one of the groups made everyone else jealous when they told us how they got to the giraffe paddock just in time to see them being fed! Before we knew it, it was time to for everyone to meet up and make our way back to the main entrance where parents collected them. Everyone seemed to really enjoy themselves, so much so that we hope to do more days like it in the future! So keep a look out on the ISA website for more details. Thanks to Dublin Zoo for a great day, and to Aine, Bevan, Dan, Dean, Lee, Paul and Tom for coming along and giving the adults an excuse to go to the zoo!

PSYCHOLOGY AND STAMMERING

SHAME WAS FOUND TO PLAY AN IMPORTANT PART IN THE STAMMERING CYCLE

RESEARCH CORNERby Tríona Lanigan

hame, embarrassment, fear, anxiety, low

self-esteem, loneliness…just some of the psychological aspects of stammering. Throughout my involvement with the ISA and my attendance at a number of group speech therapy courses I have been privileged to hear many poignant stories from people who stammer, highlighting the significant emotional impact that stammering can have. My interest in researching the psychological aspects of stammering began during my doctorate training as a counselling psychologist and was further fuelled following a review of the counselling psychology empirical literature where I found a scarcity of articles relating to stammering. It became clear there is a need to gain a deeper psychological understanding of stammering from the perspective of the person who stammers. My research explored the life story experiences of 10 adults who stammer and the impact of stammering on the life of a person over time. The overall finding was that stammering had a profound impact on the lives of participants. This impact varied in relation to life stage and life events. The experience of stammering was found to be very unique

S with a need for treatment to be individually tailored for each person depending where they are at in their lives and their life stage. The link between anxiety and stammering was strongly supported with the narratives of participants revealing anxiety as a prominent response in stammering experiences. In addition, shame was found to play an important part in the stammering cycle, adding to the struggle and tension experienced by some participants during moments of stammering.

A salient theme throughout the life story narratives was the silence surrounding stammering with a number of aspects to this silence; the silence where participants held back in speaking situations due to a fear of stammering, the reluctance to discuss stammering with other people and the lack of acknowledgement from others towards stammering. Breaking this silence is likely to ease the emotional pain involved with stammering.An interesting finding was that although all participants had an ingrained wish not to stammer, participants

typically attributed a number of positive aspects to having a stammer such as a belief they are more compassionate, sensitive, empathic, self-aware and understanding of others. Positive psychological aspects such as determination, tenacity and resilience were evident throughout the life story narratives. It is clear that treatment plans should involve more than a focus on fluency. The key to psychological intervention in the treatment of stammering is to target

interventions to restore, regulate and ameliorate against the emotional impact of stammering. Building on the positive aspects of stammering is also an important consideration in treatment.

Many thanks to the participants in my study for sharing your brave and inspiring stories, my research would not have been possible without you

have stammered since childhood. Although

statistics show that more men stammer than women do, this is something I was never aware of in the past. In my mind I was the only person in the world who stammered, which is a feeling many other stammerers might relate to. None of my family, friends or anyone I knew stammered. But I wasn’t alone, as 1% of the population stammer, or about 45,000 people in Ireland.

Stammering presented challenges, especially when I was younger. At school I refused to read out loud in class, as I would struggle to say the words. As far as possible I avoided making telephone calls, and would even run away from a ringing phone as sometimes I found it hard to say “hello”. Ordering food in a restaurant could be problematic as there were some words and sounds I would get stuck on. It was difficult when as a teenager I got a part time job as a lounge girl in a pub, and couldn’t say “Guinness”.

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by Deirdre McCabe

Speech therapy didn’t work for me, mostly due to my own reluctance to face my fears. Some years later when I did the McGuire programme I made progress. The breathing and speaking techniques helped me to speak better. Having a support system of other people who stammered was very beneficial. Special mention to Michael O’Shea, a great friend of the ISA, who is a very kind and wise man with extensive knowledge on the subject of stammering.

Also the McGuire programme showed me how to have an assertive attitude about my speech, and to seek out as many speaking situations as I could. I joined a Toastmasters public speaking club 5 years ago. In a friendly and supportive environment members are encouraged to make speeches and do speaking roles, ranging from reading out a poem to being a master of ceremonies. This has helped me to become a more confident public speaker. More recently I did acting and improvisation

classes. It was great fun, and I found I was really enjoying speaking - something I would never have thought was possible in the past. Last summer I was invited to take part in the ISA’s Women’s Leadership Project. It was a pleasure to meet other women who stammer, and be inspired by their successes and focus towards their future goals. We worked with a coach Ann Flaherty, who took us through personality tests to highlight our individual strengths and preferences and to how to develop these. People who stammer often believe that stammering holds them back from leadership roles. However this project showed us that once we know what we are really good at we should develop it, and that there is nothing to stop us from becoming leaders in these areas. Thanks to Veronica Lynch and Ann Flaherty for letting me be part of this project.

WOMEN’S LEADERSHIP GROUP

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he Growing Up in Ireland (GUI) project

is the implementation of The National Children’s Strategy (2000) from the Department of Health and Children. The development of the procedures used and the organisation of the framework to the collect data for the GUI project have been ongoing since 2006. This is first major longitudinal study of children in Ireland, providing the opportunity to learn about significant factors affecting children at various ages, factors that contribute to or that may hinder children’s wellbeing. The research was conducted by teams from the Economic and Social Research Institute (ESRI) and Trinity College Dublin (TCD). The major objectives of GUI are to chart the progress and describe the lives of Irish children, to establish what is typical and atypical in their development. Factors explored include early childhood experiences, parental influences, the child’s views and opinions on their lives, educational attainment, and factors that may lead to social disadvantage and exclusion, educational difficulties, ill health and deprivation.The parents/guardians of children in the study were invited to be involved in the study, and with the cooperation of school principals, parents and children were interviewed and involved in completing questionnaires and/ or assessment procedures. No child was involved in the

T study without both parent/guardian consent and child assent, in adherence to strict ethical regulations, and they could withdraw at any stage, no questions asked.

ENCOURAGING NEWS RE. PREVALENCE OF STUTTERINGThe sample size for the first wave of the study was approximately 14% of all nine year-old children in Ireland, or about 1 in every 7 of the 9-year-olds resident in the country, and therefore considered representative of Irish 9 year olds. The information analysed for this short paper, includes sample data (n=8,568), collected in the first wave, initial cohort of nine-year old children which was matched with data collected in the second wave (n=7,525) 13 year-old cohort.

Of the 8,568 children included in the first wave of the study, there were 66 children who stuttered (stammered) (CWS). This figure is 0.78% of the total representative sample, which is lower, but similar to, the range of prevalence estimates reported by Yairi & Seery (2015), who reported the prevalence means of subgroups of school-going children as follows: studies presented during 1970s, mean prevalence = 1.18%; early 20th Century

ENCOURAGING NEWS RE READING ABILITY AND SCHOOL ACHIEVEMENTAssessment of reading ability using the Drumcondra Reading Subtest shows that the 9 year old CWS answered a significantly lower percentage of correct answers across categories (CWS M=62%, CWNS* M=71%, p<.01). Reading disability has been reported in c. 8% of CWS (Blood et al, 2003), with other speech and/or language disorders reported to co-occur in as many as 60% of CWS. By age 13 years, however, the Irish CWS showed no differences in test scores, between themselves and CWNS*, on the Drumcondra Verbal Reasoning Test, The Drumcondra Numerical Ability Test and British Ability Scales. Again, the pattern of recovery suggests that earlier difficulties are overcome, significantly reducing academic differences between CWS and their peers at school. This has to be major encouragement for CWS, parents, teachers and other involved with CWS. This report is only the beginning of analyses of GUI data regarding CWS, but clearly, there are positive indications that prevalence of stuttering is reducing, and that the educational

achievement of older CWS is on a level with other children. Good news indeed from the GUI project.

* children who do not stammer.

References: Blood, G.W., Ridenour, V.J., Qualls C.D., Hammer, C.S. (2003). Co-occurring disorders in children who stutter. Journal of Communication Disorders. 36(6):427-48.Yairi, E. & Seery, C. (2015). Stuttering. Boston: Pearson.

studies: mean prevalence = 0.83. There is a significant reduction, however, in prevalence of stuttering in the Irish 13-year olds, where prevalence is calculated as 0.35% (n = 26), representing a major recovery pattern. A Chi Square test shows that the difference between the age groups is statistically significant significant (x2(1)=12.726, p<.000). It should be noted that data from 2 of the 13-year old CWS was not available, so these 2 may have withdrawn from the study, or may have been absent from school on the interviews/assessments days. In any event, the missing data (n=2) from the 13 year-old dataset does not impact the statistical significance of these results. The prevalence of Irish 13-year old CWS is well below the means reported by Yairi & Seery and this is encouraging for CWS, parents and therapists. It also opens a challenge to the estimated prevalence of stuttering in adults, which for many years has been reported as 1% of the population. This certainly needs to be reviewed in light of the much smaller prevalence reported in 13-year old children.

WALK AND TALK SUMMER 2015 by Callum Wells

LOCATION: HOWTH, DUBLIN • DATE AND TIME: JUNE 21ST - MIDSUMMER’S EVE, 2015 • MEETING POINT: HOWTH DART STATION, CO. DUBLIN. • LENGTH OF WALK: A LEISURELY 2 HOURS

his will be a social gathering and will

provide an opportunity for those who stammer, their family and friends, or those with an interest in stammering to Walk and Talk as they take in the stunning views of the Howth Coastal Path on the longest day of the year. As the group will walk for between 2-3 hours, it is not suitable for children under the age of 10. Children under 16 should be accompanied by an adult.How do I take part?

Please express your interest in this event before the 7th of June 2015 by contacting mail@stammeringireland.ie

What should I bring?Please ensure to bring: Walking boots, raingear, snack and fluids.Please contact mail@stammeringireland.ie for further details.

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