New Speech and Language Resource for SETBP1-HD

The team at the Speech and Language Centre of Research Excellence at Murdoch Children’s Research Institute partnered with SETBP1 Society to provide a new resource for SETBP1 families. This resource focuses on the identified speech and language difficulties experienced by children with SETBP1 haploinsufficiency disorder (SETBP1-HD). SETBP1 families often ask for guidance with helping their children learn to communicate. They want to know what has worked for other children and what speech and language challenges have been identified for our SETBP1 children. By providing children the ability to communicate their needs and wants, the frustration levels experienced by both the children and the parents decrease.

This resource can help parents with questions like the following:

• What types of speech and language challenges have been identified for children with SETBP1-HD?
• Could an augmentative and alternative communication (AAC) device or sign language help my child communicate? Or will it postpone or prevent verbal communication development?
• When should I consider looking into speech therapy for my child?
• What resource can I share with my child’s speech therapist or pediatrician?