As a parent of a child with vision impairment, it’s not unusual to have times when you need some advice or reassurance.
You may need help from different people at various stages throughout your child’s development. For example, you may need more support as your child gets older and is perhaps not reaching milestones at the same time as other children of the same age(e.g. crawling or walking).
- You may need somebody to listen to you and provide reassurance
- You may need somebody to offer constructive advice and guidance
- Or you may need to speak to other families of vision impaired children who are going through the same experiences
Creating a support network can help to ensure you don’t feel overwhelmed and help build and maintain your confidence and resilience.
It’s not unusual to feel distressed or anxious, especially at the time of your child’s diagnosis, but if these feelings become overwhelming you should see your GP who will be able to advise you about any counselling or treatment available on the NHS. Don’t underestimate the importance of looking after yourself first as this will help you to support your child.
Who can you talk to when you need help?
You could talk to:
- Family members and friends – You may find that extended family members and friendsmay have little or no experience of vision impairment and are unsure how to help. It will help if they are able to spend time alongside you interacting with your child. Speaking to them about your child’s eye condition will help them feel more confident to offer support. Where there are local fun days arranged for vision impaired children, family and friends are usually welcome to come along too and this can be a great way for them to get a better understanding
- RSBC Family Support Service can provide practical and emotional support at every stage of your family’s experience. It can offer one-to-one support, help with discussions and questions about diagnosis; help on how to access practical support, emotional support and financial support; help to support your child’s development; and help you in making decisions about your child’s future. The team can also offer advice on toys and resources for your child. You can contact RSBC’s Family Support Service by phone on 0203 198 0210 or email at connections@RSBC.org.uk
- Eye Clinic Liaison Officer (ECLO) – There may be an ECLO in the hospital where your child was diagnosed who can help explain more about diagnosi and signpost or refer to you other services
- If your child has a QTVI, they can offer advice on local services to support you and your family. Some Local Authorities have preschool workers who will carry out home visits or stay and play groups for families with vision impaired children
- You can visit the NHS website to see what support in your local area
- Counselling services – If you are feeling overwhelmed there may be counselling services available at the hospital where your child was diagnosed). If you feel you would like to speak to somebody more local, your GP should be able to arrange free counselling for you
- Carers First – If you live in the London area or surrounds you can contact Carers First for emotional support. They work with local authorities to run local, regional groups where you can find out if you could get in-home support for an hour a week, to give you a break
Help from other families
You may find it helpful to talk to other families with a vision impaired child. If you want to speak about how vision impairment affects your child with specific things such as sleeping or eating, talking to another family can help you share ideas and experience of what can work..
- Your QTVI will be aware of other families in the area and may be able to speak to them to ask if they would be happy to talk to you. In many cases, they can connect you with a family whose child has the same vision impairment as your child – or perhaps a child who is a year or two older, which can help you to understand how your child may develop
- The support service in hospital may also put you in touch with other families
- An increasingly popular way to talk to other vision impaired families is online through website forums. There is a number which can be found through the internet. There are also groups across the country set up for families whose children have specific conditions such as the Aniridia Network and Albinism Fellowship
- You can also find out what is happening in your area by searching for the ‘SEND Local Offer’ on your Local Authority website. This will provide details of what’s on offer locally such as groups and people to contact
- Your local library’s noticeboard or Citizens Advice Bureau may also have details about support in your local area
How can RSBC help?
You can contact RSBC’s Family Support Service by phone on 0203 198 0210 or email at connections@RSBC.org.uk
RSBC is setting up a group for families of pre-school children. Please sign up here to receive an email when this is live.
Published: August 2018