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:
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:
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:
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.
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