Usher information for families

Usher syndrome is a condition that affects every person, and their family, differently

Supporting a child with Usher syndrome can be challenging, but with the right guidance, small changes and adaptations, your child will be able to live a full and independent life.

Reacting to an Usher diagnosis

Every family will deal with Usher syndrome in a different way, and there is no right or wrong way to feel if your child is diagnosed with Usher syndrome.

Some people find Usher easier to accept than others, while some need a lot of support. Speaking to friends, families and professionals, and sharing your concerns, can help.

How you may feel

"It’s my fault."

No, Usher is genetic. You didn’t choose your genes and you had no choice.

"It should have been me."

It was not your fault or choice.

"I should have known sooner."

Usher is rare and difficult to diagnose. Genetic testing is not widely available, and traits of Usher, especially sight loss, may not be obvious for many years.

When should I tell my child?

You should take time to get to grips with your own feelings before you talk to your child. It’s important that you are emotionally ready to explain Usher and what the diagnosis means.

It’s good to be prepared and tell your child at a time, and in the way, you feel is best.

Parents tell us that it helps to learn about Usher first and, in some cases, speak to other parents in a similar situation. We can put you in touch with other families.

How do I tell my child?

Every child is different. Consider their age and the way the family normally talks to each other. It might be useful to plan ways to include the rest of the family, especially brothers and sisters.

It can be helpful to talk little and often so that your child gets used to the idea and can ask questions. To be told everything at once can be overwhelming.

Find out what they know already and don’t make assumptions. Ask questions to check their level of understanding and give them time to process the information. Be there to talk and make sure they know it’s OK to ask any questions.

What should I say to my child?

Learn everything you can about Usher before talking to your child. You can get information from professionals (medical, education, social care), family support groups, conferences, leaflets and recognised research.

Make sure that everything you tell them is age appropriate. For example, you may say to a young child that they have an eye problem, which means they aren’t able to see so well to the sides, up and down or in the dark. An older child may like to search for information with you.

Always be honest and open, and explain that no one knows exactly what the future will hold. If you don’t know the answer, tell them that and find out together.

How do I support my child?

Practical changes at home and at school, such as lighting and acoustics, can make a big difference. Access to assistive technology, such as hearing aids and canes, can also help.

It’s important to get support from your local authority. Children with a combined sight and hearing impairment should have access to specialist teachers at school.

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 may help, as some children feel need a safe place to talk about the emotions caused by Usher. Having a rare condition can also create feelings of isolation or social exclusion. Networking, blogging and finding other young people with Usher can also help.

What about the future?

Don’t limit what your child does. If they have been riding a bike don’t stop them now just because they have Usher.

Support them to aspire to and achieve a positive future. Young people with Usher can pursue a wide range of careers and hobbies, and developing technologies provide lots of practical assistance.

With the right support, small changes and some adaptations, your child will be able to live a fulfilled and independent life.

What might my child worry about?

Every child will have worries and concerns. Some of these may include:

  • 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.
  • Communication with family and friends in the future, and how changes will affect relationships.
  • The same worries that all young people have around popularity, attraction to others, sports and ambitions.
  • Having a family of their own.

Get in touch

Get in touch for information and advice about Usher syndrome

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