Emotional support

Here you’ll find advice for parents and carers about how to talk to your child about their diagnosis, and how to look after your own needs.

Talking to your child about their diagnosis

For many parents and carers, deciding how, what and when to tell their child about the diagnosis can be really difficult. Here you will find advice from experts on this topic.

In this video, 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 and young people with Usher syndrome, in discussing the diagnosis within their families;

  • 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 or family member). Doing so will allow you to ‘try out’ the words you want to use, and help you to feel calm and reduce your own ’emotional temperature’ (which your child will pick up on)
  • 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.
  • Answer your child’s questions honestly. It is fine to say that you don’t know the answer if you don’t. You could write down their question together, and make a plan 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 break the trust between you and your child (who is likely to already be aware of ‘differences’ between them and their peers, and 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.
  • 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.
  • Give your child examples of people using a variety of tools to help with their sensory loss (e.g. if you see someone out with a guide dog, explain what they are doing)
  • 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 you will just find different ways to access the things that you love”.
  • If a child or young person is going through a difficult time, think about emotional outlets which could be helpful. You could consider a counsellor (either via GP or privately), or talk with their school to find out about emotional support available in school.

There are other 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

Looking after your own needs as parent or carer

It is really important for parents and carers to be aware of their own needs. The wellbeing of the whole family is vital to a child’s sense of wellbeing for themselves. It is very natural for family members to react differently to a diagnosis. Talk with your partner, family or friends about the effect of the diagnosis or condition 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, which then allows them to respond to the diagnosis in their own way.

If you need professional support as you adjust to the diagnosis, reach out to the Deafblind UK helpline. They run a counselling service which is available to parents of children/young people diagnosed with Usher syndrome.

Retina UK has a helpline, as well as resources which address the emotional impact on family members of living with inherited sight loss. You can access their ‘Discover Wellbeing’ modules here or contact their helpline for information and support.

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Hear about the experience of individuals and families living with Usher syndrome.

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