Telling your Child About Their Usher Syndrome Diagnosis
There’s no easy way to have a conversation with your child about their Usher syndrome diagnosis, but we hope by providing the following advice it will help to make these conversations a little bit easier and reduce overall tension
Deal with the diagnosis first. Receiving the news that your child may have/has Usher syndrome can be upsetting and can also bring a wide range of unsettling emotions including grief. It is important to take the time to work through these emotions as you digest the news, as doing this will allow you to be in a position to fully support your child.
Learn about the condition. Some parents find it helpful to learn more about the condition so they can better answer their child’s questions. We have a wide range of information here on this website. If you have any questions that is not answered here, please contact us.
Network with other parents. Connecting with other parents can be extremely valuable and help ease the isolation you may be feeling. Our page, Finding Support in the USH Community, can help you to find ways to connect with other families.
When you feel you are emotionally ready to talk with your child, we highly recommend watching this video with Dr Ian McCubbin beforehand. Ian is a principal clinical psychologist who has supported many children with progressive vision loss and their families, and provides many useful guidance tips in this video. This video was produced by Usher Kids UK and LOOK UK.