Usher syndrome: what do I tell my child? 

This page tells you what you need to know about when, how and what to tell your child about a diagnosis of Usher syndrome. 

It also includes information on making practical changes at home, special educational needs and disabilities support, benefits, counselling, sharing experiences and looking forward to a positive future.  

On this page:

When a child is diagnosed with Usher syndrome, each family deals with it in their own way. 

Reactions can depend on the child’s age and the extent of their hearing and sight loss, and balance problems.

As a parent, you might feel it’s your fault and that you should have known sooner. It isn’t and you couldn’t. 

Usher syndrome is genetic, so it’s nobody’s fault. It’s also rare and goes underdiagnosed by healthcare professionals.

Supporting a child with Usher syndrome can be challenging, but with the right information, guidance, changes, adaptations and support, your child can live a full and independent life. 

Is telling my child about their diagnosis the right thing to do?

The short answer is yes. 

Most people with Usher have said they needed to be told about their condition.  

It often came as a relief, because they already felt something was different but they didn’t know exactly what.  

They might have felt different to their peers, including other D/deaf children.  

Even so, they might not have realised they couldn’t see what others see, especially at night. 

Maybe they felt clumsy or anxious in the dark outside and in cinemas or dark restaurants.

When children understand what’s going on, it can: 

  • Help to take away some of the worry.  
  • Stop them jumping to the wrong conclusions. 
  • Stop them looking for their own, possibly wrong, answers on the internet.  
  • Help them develop a sense that Usher is part of them. 
  • Allow them to ask the right questions for themselves. 
  • Help them to understand what they can do and the changes they need to make. 
  • Better equip them to explain Usher and how it affects them to their friends. 

Am I the right person to tell my child?

As parents, you are the most important people to your child.  

Your child likes and needs to learn from you or someone with whom they have a close relationship. 

If you need support to tell your child, you could ask at their school, a specialist teacher, a counsellor, close friends or a healthcare professional such as your GP. 

It can be helpful to keep in touch with someone who can answer your questions about Usher. 

The Sense Usher Service can support you and your family. Contact us at [email protected] for more information. You can also follow us on Facebook

It is also good idea to think about who needs to know about your child’s condition. Who do you feel sure will treat this information sensitively?

What might my child worry about? 

Every child will have worries and concerns, including: 

  • Protecting their family from being upset or worried about them. 
  • Not fitting in with friends. 
  • Losing friends or not wanting to tell their friends. 
  • Having somebody to talk to and somewhere safe to discuss their anxieties. 
  • How they’ll communicate with family and friends in the future. 
  • How changes in their life due to Usher might affect relationships. 
  • How Usher might affect having a family of their own. 
  • The same worries that all young people have around popularity, attraction to others, sports and ambitions. 

When should I tell my child? 

Children are often ready to learn but you need to be emotionally ready, so: 

  •  Immediately after diagnosis may not be the best time.  
  • Give yourself enough time to build confidence to tell your child in the way you feel is best. 
  • One way of doing this is to learn as much as you can about Usher first.
  • Talking to other parents who have a child with Usher can also be valuable. Sense can support you in reaching others. Contact us at [email protected] for more information.  
  • It’s also worth stressing that you don’t want to leave it until your child finds out some other way. You might then have to confront the issue, feeling unprepared.  

What should I say to my child? 

Here are a few simple things to keep in mind: 

  • First, learn as much as you can about Usher syndrome.
  • Always be open and honest.  
  • Your child’s sight is likely to change, so talk realistically about what might happen.
  • Make sure that everything you tell them is right for their age. For example, you could tell a young child that they have an eye problem and won’t be able to see so well to the sides, up and down or in the dark.  
  • Don’t use words such as “blind”, as that can be more frightening and may not be completely accurate. Very few people with Usher lose all their sight and most have some sight for a long time. 
  • If you don’t know the answer, tell them that and find out together. An older child may like to search for information with you. 

How do I tell my child? 

Every family is different but here are some useful ideas: 

  • Gently ask questions to find out what your child already knows.  
  • Think about the times your family normally talks to each other and use these to have conversations about Usher. People often do this at mealtimes. 
  • Don’t have a one-off, sit-down event. Instead, talk little and often to help your child get used to the idea and feel ready to ask questions.  
  • Also, think about your child’s brothers and sisters and what information is right for their age and what support they might need. 
  • Conversations about Usher might just happen naturally. If so, use them as a good opportunity. 
  • Always be ready to talk again about topics you’ve already discussed. 
  • Make sure your child knows it’s OK to ask questions whenever they want.  
  • Be realistic but try to keep your sense of humour and stay positive. 

How do I support my child? 

There are a number of steps you can take to support your child if they have Usher syndrome. 

Practical changes

Practical changes at home and at school, in lighting and acoustics, and through the use of canes, vision aids, hearing aids and assistive technology can make a big difference.

You might find these pages helpful:

Special educational needs and disabilities support 

Children with a combined sight and hearing loss are entitled to special educational needs and disabilities (SEND) support in England, and Additional learning needs in Wales, SEN in Northern Ireland and Additional support needs for learning in Scotland. 

Read more about all aspects of SEND support. [LINK]

Benefits 

If your child is under 16, you can apply for financial support through the Disability Living Allowance (DLA).  

If they are 16 or over, you may be entitled to claim the Personal Independence Payment (PIP)

Counselling or therapy 

Counselling may help, as some children and young people may need a safe place to talk about the emotions caused by Usher.  

It’s normal for teenagers to show moodiness or anger, and for Usher to be the target of their anger. 

But they might also stop talking, withdraw or become unusually emotional. 

If you want to find out about counselling or therapy services, speak first to your GP.  

Sense also holds details of counsellors and therapists with some experience of Usher. Contact us at [email protected] for more information.

Sharing experiences and raising awareness 

Having a rare condition can also create feelings of isolation or social exclusion.  

Accepting the condition can be the hardest part. The support of family, friends and other people who share and understand your experience is important. 

For other people, Usher syndrome is often a “hidden disability”. They can’t see it, so it’s difficult for them to understand or accept it.  

Being open and telling them the facts about Usher is crucial to helping them become aware of, and understand, the condition.  

When they understand deafblindness, they can make changes and adaptations to support you. 

What about the future? 

None of us knows what the future holds.  

With Usher, it’s best not to get bogged down in the “ifs, buts and maybes”. Above all else, it helps to stay positive.

  • Don’t try to think too far ahead. Take it day by day. 
  • Don’t limit what your child does. If they were riding a bike yesterday, don’t stop them riding it today. 
  • Support your child to aspire to a positive future. Today’s challenges might be easier, or disappear altogether, with tomorrow’s technologies and other advances.  
  • Young people with Usher can pursue a wide range of careers and hobbies. 
  • By being aware of their environment, making changes and adaptations, people with Usher can live a safe, happy, fulfilled and independent life. 

The Sense Usher Service

We’re here for everyone with Usher syndrome and their families.

This content was last reviewed in April 2022. We’ll review it again next year.