This page tells you what you need to know about when, how and what to tell your child about a diagnosis of Usher syndrome. <\/p>\n\n\n\n
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. <\/p>\n\n\n\n
On this page:<\/p>\n\n\n\n
When a child is diagnosed with Usher syndrome, each family deals with it in their own way. <\/p>\n\n\n\n
Reactions can depend on the child\u2019s age and the extent of their hearing and sight loss, and balance problems.<\/p>\n\n\n\n
As a parent, you might feel it\u2019s your fault and that you should have known sooner. It isn\u2019t and you couldn\u2019t. <\/p>\n\n\n\n
Usher syndrome is genetic<\/a>, so it\u2019s nobody\u2019s fault. It\u2019s also rare and goes underdiagnosed by healthcare professionals. <\/p>\n\n\n\n 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. <\/p>\n\n\n\n The short answer is yes. <\/p>\n\n\n\n Most people with Usher have said they needed to be told about their condition. <\/p>\n\n\n\n It often came as a relief, because they already felt something was different but they didn\u2019t know exactly what. <\/p>\n\n\n\n They might have felt different to their peers, including other D\/deaf children. <\/p>\n\n\n\n Even so, they might not have realised they couldn\u2019t see what others see, especially at night. <\/p>\n\n\n\n Maybe they felt clumsy or anxious in the dark outside and in cinemas or dark restaurants.<\/p>\n\n\n\n When children understand what\u2019s going on, it can: <\/p>\n\n\n\n As parents, you are the most important people to your child. <\/p>\n\n\n\n Your child likes and needs to learn from you or someone with whom they have a close relationship. <\/p>\n\n\n\n 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. <\/p>\n\n\n\n It can be helpful to keep in touch with someone who can answer your questions about Usher. <\/p>\n\n\n\n The Sense Usher Service<\/a> can support you and your family. Contact us at usher@sense.org.uk<\/a> for more information. You can also\u202ffollow us on\u202fFacebook<\/a>. <\/p>\n\n\n\n It is also good idea to think about who needs to know about your child\u2019s condition. Who do you feel sure will treat this information sensitively?<\/p>\n\n\n\n Every child will have worries and concerns, including: <\/p>\n\n\n\n Children are often ready to learn but you need to be emotionally ready, so: <\/p>\n\n\n\n Here are a few simple things to keep in mind: <\/p>\n\n\n\n Every family is different but here are some useful ideas: <\/p>\n\n\n\n There are a number of steps you can take to support your child if they have Usher syndrome. <\/p>\n\n\n\n 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. <\/p>\n\n\n\n You might find these pages helpful:<\/p>\n\n\n\n Children with a combined sight and hearing loss are entitled to special educational needs and disabilities (SEND) support in England. This is called Additional learning needs in Wales, SEN in Northern Ireland and Additional support needs for learning in Scotland. <\/p>\n\n\n\n Read more about all aspects of SEND support<\/a>.<\/p>\n\n\n\n If your child is under 16, you can apply for financial support through the\u202fDisability Living Allowance (DLA). <\/p>\n\n\n\n Find out more about benefits for parents of disabled children<\/a> and benefits for disabled adults<\/a>.<\/p>\n\n\n\n Counselling may help, as some children and young people may need a safe place to talk about the emotions caused by Usher. <\/p>\n\n\n\n It\u2019s normal for teenagers to show moodiness or anger, and for Usher to be the target of their anger. <\/p>\n\n\n\n But they might also stop talking, withdraw or become unusually emotional. <\/p>\n\n\n\n If you want to find out about counselling or therapy services, speak first to your GP. <\/p>\n\n\n\n Sense also holds details of counsellors and therapists with some experience of Usher. Contact us at usher@sense.org.uk<\/a> for more information.<\/p>\n\n\n\n Having a rare condition can also create feelings of isolation or social exclusion. <\/p>\n\n\n\n Accepting the condition can be the hardest part. The support of family, friends and other people who share and understand your experience is important. <\/p>\n\n\n\n For other people, Usher syndrome is often a \u201chidden disability\u201d. They can\u2019t see it, so it\u2019s difficult for them to understand or accept it. <\/p>\n\n\n\n Being open and telling them the facts about Usher is crucial to helping them become aware of, and understand, the condition. <\/p>\n\n\n\nIs telling my child about their diagnosis the right thing to do?<\/h2>\n\n\n\n
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Am I the right person to tell my child?<\/h2>\n\n\n\n
What might my child worry about?<\/strong> <\/h2>\n\n\n\n
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When should I tell my child?<\/strong> <\/h2>\n\n\n\n
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What should I say to my child?<\/strong> <\/h2>\n\n\n\n
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How do I tell my child?<\/strong> <\/h2>\n\n\n\n
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How do I support my child?<\/strong> <\/h2>\n\n\n\n
Practical changes<\/h3>\n\n\n\n
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Special educational needs and disabilities support<\/strong> <\/h3>\n\n\n\n
Benefits<\/strong> <\/h3>\n\n\n\n
Counselling or therapy<\/strong> <\/h3>\n\n\n\n
Sharing experiences and raising awareness<\/strong> <\/h3>\n\n\n\n