2018 Get-together of Angelman Patients

This year, with TFRD’s arrangement, Angelman Syndrome (AS) patients’ families got together in Taichung, and had a great time in a series of sense and sensibility activities. Since the gathering in 2012, they have been supported each other and shared the newest medical information via Facebook and Line groups, giving the families which had been in the same situation the warmest embrace.

Taichung Disabled Service Centerhas spacious rooms, and its facilities and services are all in place to providea barrier-free environment. There are 16 families, 62 people from all around Taiwan getting together here. As usual, the courses are special design for parents to release the burden off their shoulders temporarily, and AS patients can also enjoy the happy moment themselves to the fullest with teacher, both mentally and physically.

The parallel course shares by a Special Education Teacher Lin Yu-Yi about “parenting skills” and “interact with siblings”. When there are kids with rare disease or disability in the family, parents usually face with a great deal of disappointment, including expectations, parenting roles, self-esteem, original values, the way of life, andthe sense of belonging. The main purpose of these two courses are how to find ways to deal with themselves, their spouses, kids, relatives, and the society, and make severely disabled AS kids can still connect with the society under their parents’ help. Teacher Lin also use Family Constellation Therapy as the healing moment to help parents returning their focus on themselves temporarily, and strongly perceiving their own emotions and mental status.

Translator: Jazz Chen (Wiskott-Aldrich syndrome), Reviewer: Joy Yin