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Coming to terms with your child's sight problem - Parents' Place

Summary: First steps to take when you find out your child has a sight problem, including dealing with difficult emotions.

• First steps
• Emotions
• What you can do
• Local support
• Support from teachers and organisations

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First steps

Finding out that your child has a sight problem can feel like a ride on an emotional roller coaster. There's no "normal" response - different people respond in different ways. Here are some of the first steps you might take.

Emotions

At different times, you may feel disbelief, anger, sadness, worry and frustration in addition to the joys and pleasures that your child gives you. Different feelings come and go and sometimes catch up with you when you least expect it. All the while your child’s need for food, love, warmth and security continue to demand your energy, care and attention.

When an older child loses their sight, it may take a long time to adjust. Remember that it's possible to become independent again - you might like to talk to others about their experiences.

What you can do

Get informed

A good first step is to make sure you have access to the information and support that is available. Our Eye Info section has articles about common eye conditions and advice on what to expect from eye clinics and health professionals. VI Scotland also has medical information about a number of eye conditions, aimed at parents.

You can prepare for visiting a specialist by reading our questions to ask at the eye clinic.

Rare conditions

If your child has a rare syndrome or a particular condition which may affect more than their vision, get in touch with Contact a Family. Contact a Family provides ongoing support to rare eye condition groups and to answer enquiries on eye conditions. Their Rare Eye Conditions Directory is available from the Contact a Family shop, priced £15.

Talk about how you feel

Talking to friends or family can sometimes be a useful first step. There may also be a support group in your area.

Join our Parents' Place forum to talk to other parents with sight problems.

If your emotions are causing you difficulties in any way, contact our Emotional Support Service, which offers confidential support, information and counselling.

Find a support group

See our short list of support groups for rare eye conditions.

Contact a Family can put you in touch with support groups for people and families affected by particular eye conditions such as albinism, retinoblastoma, nystagmus or retinitis pigmentosa.

Local support

RNIB has a network of local family services officers, who organise family weekends, family days, vacation schemes and play schemes. We can also give information on benefits.

There are many local societies for people who have a visual impairment. It is worth getting in touch with them to find out if they have any activities for children and families. Look on our Agencies database for your nearest society, or phone the RNIB Helpline on 0845 766 9999.

Support from teachers and organisations

See our Who's who guide to find out what the different professionals do and how they can help.

Specialist teachers

Your Local Authority should have at least one Qualified Teacher of Visually Impaired children (QTVI) to work with you and your child both at home and at school. These are teachers who have additional qualifications and experience in working with blind and partially sighted children.

At an early stage, ask your Local Authority to put you in contact with a QTVI. They will support you and your child as soon as an eye condition is suspected or diagnosed. If you have difficulty getting help, or need the details of the specialist teacher in your area, contact the RNIB Helpline on 0845 766 9999 or 020 7388 2525.

Other organisations

• Download our list of useful organisations for parents (Word, 362 KB) who support people affected by sight problems.
• LOOK, the national federation of families with visually impaired children, brings together families of children with visual impairment. It has contact with parent support groups around the country.
• The National Blind Children’s Society (NBCS) runs events for children too and can help with resources.
• Visually Impaired Children Taking Action (VICTA) offers practical advice and support, grants for equipment, and vacation schemes. It also helps set up and fund local support groups.

People experience sight loss in very different ways. Please let us know if you find the information on this page helpful or not - email parents@rnib.org.uk.

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Content author: parents@rnib.org.uk

Last updated: 20/11/2008 11:13