Hi, I’m Beth and I have recently started SWAN Ireland – a support network for families, living in Ireland, affected by a syndrome without a name.
The need to establish SWAN Ireland first came to my attention in Autumn 2017. I was working with two families (in my current role as a Speech and Language Therapist on the Early Intervention Team) who highlighted the lack of dedicated support for parents of children with no known diagnosis in Ireland.
I conducted research, both among my colleagues and online, to see what support existed in Ireland and abroad for families without a diagnosis. A team of us from the Speech and Language Therapy Department created and shared a survey to find out from parents how supported they felt, if they were interested in being connected with other families in a similar position and what they would like to get from a support group. After this, I, along with the help of my colleagues at Stewarts Care (an organisation that provides services to children and adults with an intellectual disability), SWAN UK and other organisations, established SWAN Ireland.
We held our first SWAN Ireland meet up on 25 July 2019, in the Maldron Hotel, Tallaght.
The event was a great success. Six families attended the coffee morning and some of them brought their children along. The morning was facilitated by myself and three other people who work as Home and Preschool Liaisons on the Early Intervention Team at Stewarts Care.
There is now a SWAN Ireland Facebook Group which currently has nine members. The members are parents of children with no known diagnosis from a number of counties around the country. I would like to acknowledge and thank SWAN UK, Stewarts Care. and SWAN Ireland’s founding members for their ongoing support and guidance in setting up SWAN Ireland.
We would love to hear from more families and continue to grow the SWAN Ireland community.
Let’s meet some of the SWAN Ireland families:
‘Hi, I’m Rosemarie and this is my little boy Samuel.’
‘I’m Emma, this is my daughter Faye who will be four years old in November. To date she is undiagnosed. She is a very independent, strong willed little girl. She loves the water and music.’
‘Hello, I’m Ash and this is my son Isaac. Issac loves trains (Thomas and friends are his favourite), cats (especially creepy ones), movies and playing with water! He loves to explore, especially when he can run free in the wind.’
‘My name is carol and this is my son, Danny.’