Deciding how/what/when to tell your child about their diagnosis can be one of the most difficult issues faced by the families of children with Usher syndrome. Here you will find resources and information on this topic....
Update october 2021
A research project has been launched in October 2021 to identify approaches different parents / caregivers and families take to talking to their child about their diagnosis. The insights gained will help give a voice to our community of families, and used to identify ways to support parents / caregivers better in the future so they feel more equipped for these important conversations. Please consider participating in this research to share your experiences. Details on poster below or contact the researcher directly (jonesL155@cardiff.ac.uk) or chloe@usherkidsuk.com for more information.
In the video below, we hear from Ian McCubbin, clinical psychologist (Oxford Children’s Hospital and Fight Against Blindness) who shares his experience of supporting children and families adjusting to progressive vision loss
The advice below has been found to be useful by parents of children with Usher syndrome in discussing the diagnosis within their families;
There are some useful resources available to help you decide how you want to talk about Usher syndrome in your family. Sense has created a guide to help parents in talking to their children about Usher syndrome. The Royal National Institute of Blind People has also created a booklet to provide parents with advice around this topic. Finally, Guide Dogs UK also has an information sheet on the subject.
- Talk about it little and often (rather than one big 'sit down' event) so that Usher syndrome becomes a regular part of family life.
- If you feel very emotional at the thought of discussing the diagnosis with your child, try to have a trial run of the conversation first (with a friend, family member). Doing so will allow you to check you have all the information that you need, and help you to feel calm and reduce your own 'emotional temperature' (which your child will pick up on).
- Give your child examples of people using a variety of aids to help with their sensory loss (e.g. if you see someone out with a guide dog, explain what they are doing), so they can access practical examples they can relate to.
- Use language and concepts appropriate for your child's age. Many parents choose to talk about their child's vision 'changing' rather than talking about eventual vision loss. Again, it can be helpful to talk about some of the 'tools' available when vision changes happen (e.g. guide dogs).
- Educate your child about vision loss. In most cases, people with severe sight loss or described as 'blind' have some vision they can use. Give your child an understanding of the language of vision loss, so that they feel confident when they hear people talking about it.
- In many cases, your child will already have experience of adapting to changes with their hearing, long before they experience changes in their vision. Use this experience to their advantage, e.g. "You know how you use your hearing aids/implants etc. to help you hear? Well, if your vision changes we will find other ways to help you".
- Answer your child's questions honestly. It is fine to say that you don't know the answer if you don't. You may be able to make a plan with your child to find out the answer, by contacting one of your professional team, or asking other parents via Usher Kids UK (Facebook page or Contact Us).
- The occasional 'white lie' is OK, but don't use these often, as they can build mis-trust between you and your child (who is likely to already be aware of 'differences' between them and their peers, and so may sense a difference between the information you are giving them and their own experiences).
- If you become upset when talking about Usher syndrome to your child, don't worry. If this happens, it is helpful if you can identify how you are feeling (e.g. "I feel sad") and talk to your child about how you deal with that (e.g. "I know that being able to cry and talk about it will help, and then I'm going to go for a walk which always makes me feel better"). This helps your child develop their own awareness of their emotions and strategies which help manage them.
- Be aware of your own needs. No child is an island, and the psychological wellbeing of the whole family is critical to a child's sense of wellbeing. It is very natural for family members to react differently to a diagnosis. Talk with your partner or family/friends about the effect of the diagnosis on you, and agree coping strategies and practical ways to incorporate these into family life. Allowing yourself time to process the diagnosis - with professional support if needed - is an important step in becoming ready to fully support your child, and allowing them to respond to the diagnosis in their own way.
There are some useful resources available to help you decide how you want to talk about Usher syndrome in your family. Sense has created a guide to help parents in talking to their children about Usher syndrome. The Royal National Institute of Blind People has also created a booklet to provide parents with advice around this topic. Finally, Guide Dogs UK also has an information sheet on the subject.