How to Help Your Child

It's hard knowing that your child may face hardships in her life. Maybe you felt upset or depressed when you first found out. That's normal. But you are not alone. And there are many things you can do to help your child.

Telling your child he has Usher Syndrome
One of the hardest things for parents to do is to tell their child that he will lose some of his vision. Some parents feel like they have to do this right away.

But you can wait. If your child is very young, he might not understand anyway. For now, just tell him just enough to keep him safe:

  • Tell him that he might have more trouble than other kids seeing things at night. Tell him to be extra-careful when he crosses the street or rides his bike.
  • Or tell him to ask mommy or daddy to hold his hand if he's ever afraid of falling down.

Helping your child in school
A lot of people with Usher Syndrome do very well in school. With the right help, they can graduate from high school, college, graduate school, and get very good jobs. But your child will need extra help:

  • Get your child help through an Early Intervention program.
  • Make sure his IEP says that he has Usher Syndrome.
  • Tell your child's teachers that your child has Usher Syndrome. Explain what it is to them. They may never have heard of it.
  • Give your child's teachers names of websites, articles and books about Usher Syndrome. That way they can learn more on their own. Show them this page, and the list of links at the bottom of the page.

Helping your child deal with Usher Syndrome
Maybe your child is upset about losing her sight. Many children with Usher Syndrome feel that way. It's especially hard for these children when they're teenagers. But you can help. Here's how:

  • Help your child talk about his feelings. Sometimes children see that their parents are upset and feel bad. A child might think that it is his fault his parents are sad. Tell your child it is not his fault. He didn't do anything wrong.
  • If your child is depressed for a while, have her talk to a psychologist or a psychiatrist. These are people that know a lot about how children and teens cope with medical problems. They can help him with his feelings.
  • Help your child meet other children with Usher syndrome. Meeting these children will help your child know that she's not alone. Help her stay in touch with these children through e-mails, letters and visits.

Read our section on depression to find out more ways to help your child if he is sad or angry.

Find out what kind of Usher Syndrome your child has
Knowing what kind of Usher Syndrome your child has can help you know what to expect. So get her tested.

There are 3 kinds of Usher Syndrome.

  • Each kind is caused by different genes.
  • The 3 kinds affect people differently.
    • For example, 1 kind usually makes people lose more vision than the other kinds.

To find out what kind your child has, a doctor can do genetic tests on your child.

Get your other children tested
Usher Usher Syndrome runs in the family. So get your other children tested for it. But try not to worry - there's only a very small chance that they have it, too. (Chances are higher when the other children also have a hearing loss.)

Learn more about Usher Syndrome

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National Institute on Deafness and Other Communication Disorders

Children's Hospital of Philadelphia
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