Your child and vision impairment - first steps
Finding out that your child has a vision impairment is often unexpected and can be worrying. This section explains who can help you and your child.
Coming to terms with your child’s eye condition
There's no "normal" response to finding out your child has a sight condition - different people respond in different ways. There is a lot of support available to help you come to terms with the diagnosis, and continue to support and enjoy your child's growth and development into a young person and adult. A good first step when you find out that your child has a vision impairment is to make sure you have access to all of the information and support that is available.
Information resources to support families of children with a vision impairment
Early Support is the government initiative to provide information and support to families of children with disabilities. RNIB has developed the Early Support information materials relating to blind and partially sighted children.
You can find out more on the Council for Disabled Children's (Early Support) website, it gives wide-ranging advice about all aspects of raising a child with a vision impairment. They cover home life, learning life skills and developing independence, education provision including assessment, "Statementing" and the various ways that children and young people are supported in schools. There are booklets about a range of generic issues to do with having a child with a disability, and four specific booklets about vision impairment that are specific to the age of the child or young person. Download information booklets from the Early support website.
Early Support also produce Developmental Journals, which can be used by families and the professionals working with children to celebrate and document their progress and suggest helpful play and learning activities. There is a specific Developmental Journal for babies and children with vision impairment available on their website too . Your Qualified Teacher of (children with) Vision Impairment (QTVI) is likely to introduce you to the Developmental Journal and work with you on using it, download the Developmental Journal for babies with vision impairment.
People who can support families of children with vision impairment
There could be a lot of people involved in the care of your child, especially if he or she has any additional difficulties or disabilities. Our Who does what in eye care? A guide for parents explains whar the different professionals do and how they can help. Regarding vision impairment, there are some key contacts who can make sure that you have access to all of the information and support that you need:
Action for Blind People Children and Families Service
Our partner, Action for Blind People, has a network of Children & Families Support Co-ordinators in England who provide a range of services to blind and partially sighted children and their families. This service includes information and advice, and a programme of regular and one-off activities and events. They run Actionnaires clubs which meet regularly to provide leisure and social opportunities for children with vision impairment and their siblings. See the activity calendar for more information. A similar service is provided in Scotland, Wales and Northern Ireland by RNIB.
Your Local Authority should have at least one Qualified Teacher of (children with) Vision Impairment (QTVI) to work with you and your child both at home and at school. QTVIs work as part of Local Authority specialist teaching services, sometimes called "The VI Service" or "Sensory Impairment Service". QTVIs work on a "visiting" or peripatetic basis, having a caseload of children and young people that they visit regularly in home and/or at school. These are teachers who have additional qualifications and experience in working with blind and partially sighted children.
This is an important contact, and the referral should be made automatically by the Eye Clinic when your child is diagnosed with a vision impairment.
At an early stage, ask your Local Authority to put you in contact with a QTVI if you are not already. They will support you and your child as soon as an eye condition is suspected or diagnosed (they support babies from birth if appropriate). If you have difficulty getting help, or need the details of the specialist teacher in your area, contact the RNIB Helpline on 0303 123 9999.
Counselling, emotional and peer support for families of children with vision impairments
If your emotions are causing you difficulties in any way, contact our Emotional Support Service, which offers confidential support, information and counselling. 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. Phone the RNIB Helpline on 0303 123 9999 or search the Sightline Directory. Also, VICTA's family support network, Through Scarlett's eyes is there to support families with visually impaired children.
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 – they 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. They provide ongoing support to rare condition groups and to answer enquiries on eye conditions. An A-Z of eye conditions is available on the Contact a Family Website and there are also details of how to contact specific support charities for different conditions. Telephone helpline: 0808 808 3555 (Mon-Fri). See our short list of support groups for rare eye conditions.
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