Williams Syndrome Association Ireland

WS Literary School at MIC, Limerick

MIC Lecturer and Researcher Fionnuala Tynan has recently announced plans to commence a literacy school for individuals with WS which will commence in February 2019. This will be a facility to support children and adults with WS and will facilitate research on the best approaches to support them. Further details are available by emailing fionnuala.tynan@mic.ul.ie

Positive Feedback on Launch WISHES

What people are saying about WiSHES

“I love this book! It’s so practical and positive. It’s littered with insights that resonate with my experience as a parent, helping to make sense of our son’s individual learning and developmental journey. The easy-to-navigate structure of the book invites focused reflection and prompts strategies across all educational aspects that are, crucially, centred around the unique attributes and strengths of the individual. It will, I’m sure, serve as an invaluable resource for engagement and collaboration between parents, teachers and education providers. Above all, it reminds us that our inspiring WS sons, daughters and pupils have so much to offer our families, schools and communities!”

Jon Lovell, Parent, Secretary of the Williams Syndrome Foundation (UK) and President of the European Federation of Williams Syndrome (FEWS).

Comments from parents:

“OMG this book is out of this world, it’s fantastic. Fionnuala really understands people with WS and what they and their families need to succeed. I have never come across so much help and understanding in one read to date.

I would have cherished it for all the years my daughter was at school and to help the teachers understand that her better. I love all the help and suggestions throughout the chapters … with each obstacle there is a suggested road map around it!

My daughter is now in a training centre, but yet I think the book will still be valuable to us as a WS family. It will remind us how to approach various difficulties that arise that may cause anxiety and anguish to our daughter. Also, the learning never ends and there are so many great approaches suggested in the book that we would find extremely helpful for our daughter.

I’m quite emotional after reading it as I think it’s what we have been waiting for. It’s like a user’s manual for WS. We finally have someone who has inside experience and understanding of WS. All the initial negatives coming from a diagnosis can now be erased with the guidance from this genius book, we now all have a road map for our WS people to succeed and be happy in their everyday lives of learning”.

Debbie – Parent.

 

“At Last! A positive and practical guide to understanding and motivating people with Williams Syndrome. This is the first time that every important aspect in relation to raising a child with WS has been gathered in an understandable and user-friendly format. It offers useful tips and practical hints in addressing the unique needs of these amazing children. Its step-by-step approach makes any perceived enormity of the task more approachable and achievable by any family. When our child was first diagnosed, we were advised to give him confidence in his own abilities. This book will increase any carer’s confidence in doing just that. It is a must-have guide for all parents/carers and teachers of children with Williams Syndrome to help them navigate, motivate, increase their confidence, and assist them to reach their full potential towards living their best independent life.”

Deirdre and Johnny Graham  (parents)

 

Comments from Siblings:

“I think this book will give me a better understanding of Williams syndrome. When I first heard my sister had WS I thought it was an illness like a cold but then I realised it was something completely different. The people I meet with WS are kind, funny, love music and talk a lot. I think this book is very interesting and I would like to learn more about WS.”

Jackson (sibling)

 

Comments from Teachers:

“From the outset, this book provides an uplifting and fresh minded account of Williams Syndrome. There is a superb balance between theory and practice. As a practitioner of mainstream classes and special education, this book provided me with a larhttps://www.curriculumdevelopmentunit.com/wishes.htmlge volume of practical ideas, examples, templates and became a worthwhile workbook of self-reflection. It acknowledges the individual’s strengths at the forefront and endeavours to identify and support the holistic needs of the child with WS as a focal point for systematic intervention. I would highly recommend this pragmatic book to anyone working with individuals with Williams Syndrome”

Dearbhail (teacher)

 

The book can be purchased from the Curriculum Development Unit of Mary Immaculate College. It costs €30 plus postage. https://www.curriculumdevelopmentunit.com/wishes.html

WISHES – New Book WS Learners

Recently MIC lecturer Fionnuala Tynan launched new book that has been described as “a must-have guide” for all parents and professionals working with people with Williams Syndrome.    This message is based on MIC’s press release about the event and provides a good introduction to this wonderful book and the great research underway in MIC under Fionnuala’s direction.

WiSHES – Williams Syndrome Holistic Educational Strategies – is written by Fionnuala who is a Lecturer in the Department of Reflective Pedagogy and Early Childhood Studies at MIC.  This is first book in Europe to be published on promoting inclusive learning in children with Williams Syndrome (WS). The book outlines a way forward for supporting learners with WS and moves away from a medical model of disability to a more holistic profile that acknowledge the biological, social and psychological aspects of learners with Williams Syndrome.

While primarily focused on learners of primary and post-primary school age, much of the book is relevant for younger learners and for those who have left school. The book’s underlying belief is that individuals with WS have a wide range of talents and learning abilities which need to be developed to enable high quality and lifelong learning to take place.

According to Fionnuala,  “Williams Syndrome is currently under-diagnosed in Ireland – its rarity means that parents and professionals often struggle to know how best to support the individual. WiSHES is full of strategies for promoting learning in all aspects of the child’s life. I have the privileged experience of having a brother with WS and the book is based on my personal as well as professional experiences. It is the culmination of nine years of research with individuals with Williams Syndrome, their parents, siblings, teachers, principals and inclusion support assistants.”

Continuing she said: “I could not be happier or prouder to have launched this book. The response has been overwhelming. I have had requests from parents and teachers in the US, Canada, Australia, New Zealand, Spain and Slovakia, wondering how they can get the book. Their hunger to support a child with WS is hugely encouraging. I feel very privileged to be involved in the lives of so many inspiring people with WS who continue to challenge the way I think about education. My ‘WiSH’ for this book is that it will enable parents and professionals to work together to best support a child with WS. I also ‘WiSH’ that parents of a newly diagnosed baby will see they have much to look forward to and a child who is full of incredible potential.”

Congratulating Fionnuala on her new book Dr Patricia Daly, Head of the Department of Educational Psychology, Inclusive and Special Education, MIC said: “Now and again we are really lucky when a book like this is published that fills a particular niche in a unique way. There is a need for basic information on Williams syndrome for families and educationalists. More importantly, we need to know how to best support individual children and young people with WS in fun, meaningful, interesting, appropriate and creative ways. This book does that.”

WiSHES is published by the Curriculum Development Unit (CDU) at MIC. Congratulating Fionnuala on her new book Eucharia McCarthy, Director of CDU said: “We are delighted to add this unique and rich text to our growing suite of resources to support inclusive and special education. From all of us here in CDU we want to commend Dr Fionnuala Tynan on her long term dedication to improving outcomes for children with Williams Syndrome and her passion and commitment that permeates every page of this book.”

Speaking about the support she received from her colleagues at MIC Fionnuala said: “I consider myself very lucky to be in a work environment that supports my work on behalf of individuals with WS and to be surrounded by friends and colleagues who are generous in their enthusiasm for my projects. MIC is home to a week-long summer camp for children with WS and their siblings. Students from the B Ed programme volunteer at this camp and can use it in tandem with the summer camp for adults with WS as their alternative education experience.”

The book was launched during the first national symposium on Williams Syndrome which was held in Mary Immaculate College on Saturday 24 November. The day-long event, funded by AdaptPharma (Dublin) and PRISEM (MIC), had sessions for parents, professionals and also people with WS.

Speaking after the event Fionnuala said: “The feedback from parents was hugely positive. Some had travelled from as far as Belfast to learn new ways to support their child with WS. This highlights the void in supports for parents of rare conditions. Attendees were delighted with the inclusive nature of the symposium, which allowed for parents, family members and professionals to come together and where they left with practical ideas for helping their child with WS to reach his/her potential.”

WSAI Annual General Meeting 2018

This years Annual General Meeting will take place in Mary Immaculate College Limerick on Saturday the 24th of November at 4pm following the First WSAI Annual Symposium which will also be held in the College beginning at 10.30am.  During this event Dr Fionnuala Tynan will launch her book WISHES (Williams Syndrome Holistic Educational Strategies).  We are indebted to Fionnuala and Mary Immaculate College for hosting WSAI at what should be a very special event.

Please confirm your attendance with WSAI Secretary Debbie Brannigan (deboraghbrannigan@hotmail.com) if you haven’t done so as room bookings and catering will be based on the number of attendees? Please let her know how many of your children will attend also.

 

 

First National Symposium on Williams Syndrome

Mary Immaculate College will host the first national symposium on Williams syndrome (WS) on Saturday 24th November. WS is a rare genetic neurodevelopmental condition that affects 1:7500 people but it is currently underdiagnosed in Ireland. Its rarity means that parents and professionals often struggle to know how best to support the individual. The day, which begins at 10.30 has parallel sessions for parents, professional and individuals with WS. Inputs include how people with WS perceive their condition, supporting positive behavior through Collaborative Proactive Solutions, developing dynamic parent-professional partnerships, harnessing the power of everyday technology for learning and meeting the needs of professionals to meet the needs of individuals with WS. The book WiSHES (Williams Syndrome: Holistic educational strategies) by Dr. Fionnuala Tynan (MIC) will also be launched on the day by Dr. Patsy Daly, head of the Department of Educational Psychology, Inclusive and Special Education. The symposium will be of value to parents, professionals and anyone seeking to support an individual with WS. There is very limited availability for this symposium left. Please email deboraghbrannigan@hotmail.com to secure a place.

Please see the Formal Invitation to the Symposium including the agenda for the day;  2018_WS Symposium

Autumn Edition of the WSAI Newsletter

Please see the Autumn edition of the WSAI Newsletter

WSAI Newsletter Vol 23 Issue 2 Autumn 2018

 

Online Resources for Physical Therapy for WS

Please see a number of on-line resources which deal with physical movement and posture for people with WS.

Skillsforaction.com

Understandingwilliamssyndromeblogspot.com/muscles-and-bones

Understandingwilliamssyndromeblogspot.com/Muscles

Regards,

Debbie Brannigan, Secretary WSAI

WSAI Newsletter Spring 2018

Please see the Autumn edition of the WSAI Newsletter

WSAI Newsletter Vol 23 Issue 1 Spring 2018

 

Study on Social Interaction with Disability

Please note that our friends at Durham University and undertaking a new on line study of the social interaction of children with disability including Williams Syndrome.  Debbie Riby and her team are looking for parents to fill in an online questionnaire on social interaction in order to develop better intervention methods to support children with disability.  As you may recall this team from Durham previously put on a very valuable workshop for WSAI on managing anxiety in children with WS.   If you can assist with this questionnaire please read the information flyer  which will tell you about the research and provide the link to the on-line questionnaire.

Many Thanks   -  WSAI Committee

 

Music/Activity Camp 2018 Details

The Volunteer Application Form for Music/Activity Camp 2018 is now available on this site. Go to the Music and Williams Syndrome page for details.