Beth Milofsky, speech and language therapist and founder of SWAN Ireland (Syndromes Without A Name)
6.30am: I like to give myself some time over breakfast to check SWAN’s social media accounts and respond to queries about SWAN Ireland, a new support group that I established for people, and parents of children, affected by “a syndrome without a name” in Ireland.
I welcome new members, share information, post about upcoming events, and connect with other relevant organisations, such as SWAN UK and Rare Diseases Ireland.
7.30am: I commute from Clonskeagh to ‘Stewarts Care’, an organisation that works to support and empower people with intellectual disabilities and their families.
8.30am: I touch base with our early services team, speech and language colleagues, families, key workers, care staff, educators, and healthcare professionals in Stewarts and within the community, to co-ordinate care for service users and families.
9am: Clinic gets under way. I see children from birth to school-going age to support different aspects of their development, including speech, language, communication, feeding, eating, drinking, and swallowing (FEDS) skills.
It was through this daily interaction with families that the need for SWAN Ireland was identified. SWAN Ireland aims to create a community for people to identify with and share experiences.
10am: A child and family may attend a group or individual appointment, where they meet with one or more therapists.
Our focus is on working alongside the child and family to identify meaningful goals to maximise a child’s participation and learning in everyday settings such as the classroom, communicating with peers and families.
2pm: After a quick lunch, I may meet with an adult to review and support their FEDS skills.
I spend some time promoting and preparing for Rare Disease Day 2020, on February 29. Stewarts Care and SWAN Ireland are registered friends of the campaign, getting involved in raising awareness via events and social media.
In Stewarts, we are hosting a coffee and entertainment morning. Families in SWAN will have chance to share their stories.
4.30pm: I head to the gym, before heading home to work on my MSc in clinical speech and language studies at Trinity College Dublin.
See: Rare Disease Day www.rdi.ie; email@example.com