Symposium on Rare Disease Schooling Experience

When children with rare diseases (RD) are entering school, parents feel worried whether their children can adapt to school life. To provide more reference experience and information for parents of children with rare diseases to accompany their children to school, the Kaohsiung branch office held its first symposium on August 14. We invited mothers to share their experiences in accompanying their children to school and invited teachers to introduce the differences of current school placement and curriculum resources.

Speaking up for your child's needs is a priority when transitioning to a new environment

Experienced mothers reminded parents with a RD child that it is their responsibility to provide teachers and schools with as much information as possible about the status and severity of their child's illness. Parents should stay in contact with the school if their child has any needs and actively participate in school activities so that they can have a better understanding of their child's school life.

Placement type and course: concept clarification helps to choose

As for how to help RD children get the right education, the first step is to understand the types of education available, such as resource classes, visiting counseling, intensive special education classes, special education schools, etc. Teacher Lin clearly explained the various types of placement for parents to better understand.

Although each child has a different disease, they may encounter similar conditions. For example, a mother whose child has Pompe Disease was worried that her child's needle scars from medication would be joked about by classmates, and another parent responded how she guided her child through the questions of classmates. The meeting was a great opportunity for parents with a RD child to learn from the experience of others and to relieve their children's anxiety about going to school

Translator: David Lee (Becker Muscular Dystrophy)