The journey to and from diagnosis can be difficult for you and your family but we’re here to support you through it, every step of the way.
We’ve put together this guide to help you understand the process of diagnosis, the emotions you might be feeling and to direct you to important sources of information.
Mia wanted the same as her friends - to go out and enjoy life independently. Find out how we supported her and her family so that she could do just that.
After they diagnose your child, the ophthalmologist will send a letter to your GP explaining their findings and any treatment, tests or procedures.
The ophthalmologist also refers your child to the local authority Education/Sensory Support Team (the name may differ, depending on the local authority).
The Education/Sensory Support Team is there to support you and your child, now and for the next few years. Through this process you will meet and talk to a lot of specialists, all with the same aim; to help your child live their best life.
The specialists may include:
You will be sent a copy of the ophthalmologist’s referral letter, but if you haven’t, ask the ophthalmologist or their receptionist to send you it for your records.
Once the Education/Sensory Support Team has received the referral, they’ll make an appointment to visit you and your child at home. This is an important step in getting practical help.
Your ophthalmologist may talk to you about having your child certified as sight impaired (partially sighted) or severely sight impaired (blind).
This is often a time that parents find particularly difficult, as it’s not always clear exactly what your child can see and the level of vision they may have.
Your ophthalmologist may not be able to give you precise answers to questions such as ‘exactly how much can my child see?’. It’s only time, regular hospital visits and your observations of your child that will make the whole picture clearer. For this reason, they may decide not to certify your child until they're older, when the responses to the tests may be more accurate. Even if your child has a diagnosed vision impairment, they may not meet the criteria for certification.
It’s your choice whether to have your child certified as having a vision impairment but it can help with accessing further support from sensory services - amongst other benefits. Find out more about the certification process in our guide.
At this point, you’ll have been told that your child has a vision impairment and you may know the name of the eye condition.
It’s normal to experience many different emotions, which may include bewilderment, a sense of loss, profound sadness and confusion. You may feel angry and start to want answers. All these emotions are valid but it's important to remember that with the right support, your child can and will have a happy life.
You may not know what services you can access to support your child and be looking for information, advice and guidance. Emotional support and someone with experience to talk to about your worries can help you, your child and your family with the diagnosis and with the many different emotions you’re feeling. For this emotional support, call our specialist team.
It’s also perfectly understandable to want to know more about your child’s eye condition; you may be tempted to use the internet to read more information before you get a firm diagnosis from the doctor. But take care, as although the internet can be a good source of information, some of it may be inaccurate and not relevant to you.
Attending your first eye clinic appointment with your child can be daunting. The clinics are often very busy and several different people may complete a variety of tests with your child.
You’ll be asked many questions about your child’s vision. You too may have questions you want to ask – it’s a good idea to make a note of your questions before you go to the clinic, so that you don’t forget anything vital. And if you don’t fully understand the answers they give, ask them to repeat themselves.
Some suggestions of questions you may want to ask:
Once the ophthalmologist has all the information, they’ll be able to diagnose your child’s eye condition. Have a pen and paper with you, so you can take notes. It’s very easy to forget the details when there’s a lot of new information to take in. You can also ask for written information to take home with you.
Your child may have had to undergo various tests and that can mean waiting longer for the diagnosis.
These could be electrodiagnostic tests (which aren’t invasive and measure the amount of electrical activity in certain areas of the body) such as:
A blood test might also be done to determine whether your child has a specific gene related to an underlying condition that might be affecting your child’s vision.
It’s natural to be concerned when your baby doesn’t make eye contact with you. However, it can take a few weeks for a new-born baby’s vision to develop and for your baby to make direct eye contact with you when you’re talking or playing with them.
The lack of eye contact doesn’t automatically mean that there’s a vision problem but if you’re concerned, contact your doctor and ask them to check your baby’s vision. If you’re still concerned, ask your doctor for a referral to an ophthalmologist.
After Alma received her final diagnosis, I decided to call Guide Dogs and see what support they could offer us. I spoke to Wendy, the National Family Support Manager, who understood what we were going through and reassured me that we could help the girls live their lives to the full, just like other children.
Your child is unique and so is their eye condition. Even when children have the same eye condition, the severity will differ, as will the way each child experiences the condition.
After your child is diagnosed, you might our need help with:
It’s natural to have concerns about your child’s future and to want to make sure all possible support is in place. You may be worried about even knowing what support and services are available. Or you know what support your child needs but you’re finding it difficult to find a way to have it put in place.
Our specialist team can talk through your concerns and tell you about the support you need to be aware of.
Once your child has been diagnosed, it’s natural you’ll want to know more about their specific eye condition. There are some really useful support groups for specific eye conditions and they often hold family days, where you can meet families with children who have the same condition.
Toys that have reflective surfaces, lights, bright colours and a noise such as a bell or rattle, all help your child to find and enjoy playing with their toy. Have a look at what’s available in specialist toy catalogues first but be aware that they can be expensive, you may want to find similar alternatives. You need to be mindful of safety, so make sure the toy is safe for your child to play with.
Here are some examples of specialist toy catalogues:
We’re here to help if you’d like more advice on appropriate toys for your child.
There’s no right or wrong time or way of telling people about your child’s diagnosis. First though, you need time to absorb the news yourself, so that you can gain a little resilience before discussing the situation with family members and friends.
Often, once parents have spoken openly and honestly with people, they discover that those people were already aware of the child’s vision difficulties but had accepted them without comment.
Of course, there are occasions when the diagnosis of vision impairment comes completely out of the blue. In that situation, you should only start conversations with your family and friends when you feel ready to do so.
Speaking about your child’s diagnosis can help everyone involved, including you and your child. However, try not to talk constantly about the diagnosis with your child, particularly if they’re old enough to understand. Try to keep it normal and not something they need to worry about.
Relationships often become strained during times of stress and uncertainty and the diagnosis of your child's vision impairment may be one of those times.
Not everyone feels the same emotion at the same time and individuals can be in a different place emotionally at different times. Some parents can be quite pragmatic and accepting of the diagnosis, others may be extremely emotional and upset, and some may feel a sense of guilt and bewilderment.
Talking to each other to discuss the diagnosis and your feelings about the situation can help you both to understand each other’s position. It will help you to support each other and to move forward emotionally, giving you both the resilience to negotiate the way ahead for your family.
If your child has been diagnosed with a specific eye condition and only has vision in one eye, this is known as monocular vision. It affects their 3D vision and depth perception, and can cause difficulties as they get older in moving safely around steps, stairs, kerbs and different floor or surface levels. It’s not uncommon to have significant sight loss in one eye and normal vision in the other eye.
Some children with severe vision impairment may experience difficulties with sleeping. That’s because the body’s natural, internal process that regulates the sleep-wake cycle (known as circadian rhythm) is affected by light and darkness. If your child has little or no light perception, they’re likely to experience difficulties with the sleep-wake rhythm and will have disturbed sleep patterns. One option is to speak to your doctor, who may be able to help make your child’s sleep-wake rhythm more manageable.