Photo of a young boy wearing red-rimmed glasses, smiling at the camera with a grass lawn in the background.

How to talk to your child about Usher Syndrome with Dr. Ian McCubbin

Want to find out more about your child's Usher Syndrome diagnosis? How should you talk to your child about their condition? This article is full of advice and information from leading clinical psychologist, Dr. Ian McCubbin.

Earlier this year, we teamed up with Usher Kids UK to deliver a talk featuring clinical psychologist Dr. Ian McCubbin.

We covered the following topics:

  • How do talk with my child about their condition?
  • When to tell my child he/she has Usher Syndrome?
  • How to tell my child he/she has Usher Syndrome??
  • How to talk about Usher syndrome with our child who has additional needs (autism) or who might find it overwhelming
  • How to talk about an Usher Syndrome diagnosis as a family?
  • How to get the right balance between preparing for the future and making the most of now?
  • How to support and equip our child emotionally to deal with future changes / challenges?
  • Coping strategies for anxiety
  • How to prepare myself as parent for what lies ahead?

It was a hugely informative session. For those of you who were unable to attend, we have summarised the key learnings and tips below. And whilst the focus was on Usher Syndrome, much of Dr. McCubbin’s advice can be applied to anyone living with vision impairment.

What is Usher Syndrome?

Usher syndrome is the most common condition that affects both hearing and vision; it can also affect balance. The main symptoms of Usher syndrome are deafness/hearing loss and an eye disease called Retinitis Pigmentosa.

Why is it important to talk to children about their eye condition?

This is a complicated and sensitive topic but there are clearly a number of potential benefits. 

Firstly – and most importantly – if your child has become aware, or is aware of their eye condition, they may have worries they have not shared with you which may be reduced by having more accurate information. Also, if your child needs to take a role in managing their condition, for example, by taking medication, or attending appointments, their motivation to do so may be improved if they have a better understanding of their diagnosis. 

How do I tell my child they have Usher Syndrome?

This is a subject that causes many parents significant worry. Truth is, there is no perfect way to do it so try not to put yourself under too much pressure: there will be many ways to do it that will be good enough.

If you are anticipating this kind of discussion with your child, spend some time checking your own level of understanding. If you discover that there are aspects of your child’s diagnosis about which you are uncertain, contact your child’s medical team – for example – their ophthalmologist or optometrist, in order to ensure you are able to answer whatever questions arise. 

Many people envisage that there will be a big, sit down conversation where all the details of the eye condition and the future will be discussed. This is unlikely to be the case: which is probably a good thing. This type of situation invariably feels more pressured and this will up everyone’s stress and anxiety. 

What is more likely is that your child will develop their own understanding of their Usher Syndrome diagnosis by asking a series of questions over weeks, months or even years. Each of these questions represents an opportunity for you to check their level of understanding and to give them a little more information. Where possible try to answer these questions as honestly as possible but don’t feel obliged to go into great detail. It’s very possible that your child only needs to check out a couple of ideas. 

Who should tell my child that he/she has Usher Syndrome?

You know your child. You understand – better than anyone – their personality and their level of understanding and invariably that means that you are likely to be best placed to answer their questions. There are occasions, however, where a child or teenager may choose to speak to someone else: for example a teacher or a Teaching Assistant. Be open to this possibility; some young people express a preference for having this type of conversation with a professional when they feel it is more likely that they will be able to get the facts without upsetting them or you. 

Is it ever OK to tell my child white lies about their diagnosis?

Your child will take their cue from you; if you can appear confident and reassuring when you talk to them about their condition, then some elements of your child’s anxiety are likely to be contained. Exercise a little caution around trying to keep the facts from them in order to protect them. While this is a wholly understandable response it is likely that your child will notice that this has happened and this may lead to greater anxiety in the longer term, and more suspicion around any subsequent intimation you give them.

In summary

  • Take the pressure off yourself; there is no perfect way to do it and probably no need to plan a big meeting
  • Drip-feed information 
  • Think about who might be well placed to support your child

Lastly, if you would like more information, the RNIB has produced a booklet called Tough Talks; this is a brilliant summary of all the key information.

How to talk to people about your child’s Visual Impairment


Clearly there is considerable variation in the extent to which a visual impairment may be apparent to an outsider; and even if it is more obvious, the precise nature of the impact will not be clear 

This could be considered an invisible disability. 

There is often a general lack of understanding about what it means to have a visual impairment or an eye condition. Many people will think ‘visual impairment’ means something that can be fixed with glasses; people will think that “blind” means zero perception of light. 

See for yourself

The website; seenow.org uses your mobile phone camera to simulate visual impairments including macular degeneration or diabetic sightloss.

Searching ‘vision simulations’ by Vision Aware on YouTube will reveal videos portraying Retinitis Pigmentosa, Macular Degeneration, Cataracts, Glaucoma, and Diabetic Retinopathy. 

How important is it for other people to have an accurate understanding of your child’s visual impairment?

Are members of the family upsetting your child by continually expecting them to be able to perform tasks that their visual impairment makes impossible? Are people confused or upset by your child’s non-attendance at family gatherings (when they are choosing not to go because they find it difficult to perceive faces)?


This is clearly at the discretion of your child; can they find a way to communicate it to the person who has not understood? You can support your child to create an information sheet.

Two ways to encourage your child to create an information sheet

Write the following sub0headings on a pice of paper:

My name is… 

I am a pupil at

I like… 

My diagnosis is

I have an eye condition that…

Summary

  • This type of issue is really common and is rooted in misconceptions about what a visual impairment is
  • The best way to address this is by finding or developing a resource (leaflet, information sheet, website) that you and your child can direct people too

Can talking about their eye condition help my child?

Yes!


Think about it in terms of adjustment 

When something is upsetting, aversive or traumatic, the natural human response is to avoid it, just as we would rationally do with physical pain. But by avoiding we don’t develop a sense that it is understood or manageable. 

Talking about it would help.

A positive adjustment to chronic illness usually helps your child maintain a positive emotional well-being, age-appropriate behaviour and developmentally appropriate self-esteem/self-worth at the same time as coping with all the requirements of the diagnosis.

Coping with an event (like a diagnosis) ‘well’ involves working out (through doing things!) what we think about the diagnosis and then considering what we do about it. Lazarus and Folkman (1984) suggested that this is a two stage process; firstly appraising how harmful it is and then considering whether the ‘threat’ of the diagnosis can be overcome to either minimise the consequences or optimise adaptation.

How children, young people and families appraise this threat will influence their ability to cope with the situation (Folkman, 1999).

So talking about your child’s condition is an opportunity to promote independence; face challenges, overcome and develop resilience. 

Empowering a child to discuss or describe their eye condition to others, in person, again via an information sheet – to family members, or classmates, or teachers – can be enormously powerful in helping this adjustment. 

Should my child give a presentation about their condition to their school?

This can be a therapeutic process for some children.

Support them to do a little research. Do it with them. Find stuff out together. 

We talked about building resilience earlier; this type of task can not only help with their adjustment, but can build resilience too.

Summary

  • Talking about it, in whatever form feels acceptable to your child, can be a useful approach to help build resilience
  • Think about ways they can do this; in person, in a video call, with their peers or teachers
  • Remember to address the two processes from Lazarus and Folkman; try to discuss the nature of the diagnosis and what things or strategies can be put into place to optimise their engagement with everyday life

What is the difference between confidence, self esteem and resilience? 

When people talk about the emotional well-being of children these ideas tend to be used a little interchangeably, but they do refer to different processes.

They are all closely tied to the idea of identity. 

Your identity is made up of all the different things that make you ‘you’ – this can include where you come from, what you like doing and what you are good at.

Self esteem is how children think about themselves. Having positive self-esteem means that, on balance, a child mostly feels good about the self. Good self esteem is associated with having good psychological well-being. 

When we talk about resilience we are thinking about how children cope when things are difficult. Resilience is like a resource that they can drawn upon when faced with challenges and stresses.

Self confidence is the extent to which a child believes in their own judgement or ability; this is not only closely tied to their experience of being effective or successful in the past, it is also closely related to their self esteem, and has a bearing on their resilience. 

Why might children with eye conditions/VI experience difficulties with self esteem, resilience and self-confidence?


Living with an eye condition can have significant implications for a child’s emotional well-being and how they feel about themselves.


The impact of sight loss on an individual can vary according to a number of different variables including their age, severity of visual impairment, age of onset, etc.

Vision-loss will, inevitably, impact on a child’s relative level of independence; potentially impacting on developing social skills and social relationships and also their ability to participate in some activities with their peers. Clearly these peer relationships could also be impacted by how much a visual impairment impacts on a child’s ability to read facial expressions, body language, etc.

While much of this impact can be mitigated with thoughtful support and planning, it can impact on a child’s self esteem; particularly if it results in feelings of loneliness or ostracism. 


At what ages are these difficulties likely to be most apparent?


When we discussed the importance of identity earlier, we acknowledged that this consists of all the different elements that make up “you”.

Developing this self-identity is an ongoing process and it emerges through a child’s developmental process; children develop this in relation to how they are treated by their main attachment figures and how they see others.
There are certain developmental stages where some of these issues may be more apparent. 

Certainly by the time that a child goes to school in the UK, around the age of 4, they will be beginning to be more aware of the difference between them and their peers, but this awareness will become more acute as a child approaches adolescence and peer acceptance becomes increasingly important.

Rather than focusing solely on age, it may be more helpful to try and be attuned to the challenges associated with milestones, as these tend to be moments when children are most aware of the difference between them and their peers (and also milestones can be stressful). Milestones could include starting school, moving to secondary school, or learning to drive. 

Being aware of the potential significance of these milestones and anticipating that your child may need extra help around them can help to reduce their impact. 

How can parents help their child develop confidence? 

As adults, where do we get our confidence from? Where do we get our positive self-image from? We get these things largely from two sources; from relationships and competencies, by which I mean the jobs, skills or sports that we feel good at. 

Help your child to identify and then engage in activities that give them a sense of mastery; things that they enjoy or are good at. This could be sports, crafts, or playing a musical instrument. In order for the benefits of these type of activities to “stick” it is important that any achievements they make can be noticed and celebrated; by them and by their parents, too. Clearly fostering greater engagement in a hobby or sport can also help to develop peer relationships and, as mentioned above, these relationships can be really important in building confidence. 

It’s really important to avoid being overprotective. Children will intuitively notice if their parents are protecting them and will interpret it as a sign that the world is unsafe, that they are not equipped to cope; or possibly both. Facing adversity and overcoming something can be a terrifically empowering experience for children. Allowing your child to encounter and manage difficult challenges safely, can really help to develop their confidence. 

How do I build self-esteem in a child?  


Try to develop other aspects of your child’s identity; particularly when so much focus may have been on their eye condition. Spend time talking to them about how they see themselves; their talents and what is important to them. Write down their ideas; ask other members of the family to contribute too: what do they think are the child’s most positive qualities and skills? Identify some examples to illustrate these; positive memories that you share – and then create a collage of these affirmations, decorated with printed out photos of when the child displayed that attribute. 

Independence is a strong predictor of self esteem in children with a visual impairment, so where possible try to nurture this. Precisely how you do this may vary depending on the needs of your child but think about what tasks they could learn; for example cane training so they could safely find their way to the local shop, cooking a meal, or travelling alone on public transport. 

As parents, how can we help children to be resilient in the face of significant challenges?


Resilience is primarily based on the strength of the relationship that a child has with their parent or guardian. Nurturing this relationship is a really good way to strengthen the child’s resilience.

Practicing a technique called ‘love-bombing’ can help with this. In summary, ‘love-bombing’ is about giving a child the chance to take control and define some quality time with their parent; giving your child the chance to decide how they would like to spend some quality time with a parent; uninterrupted one-to-one time for as long as is possible – at least for several hours at a time but ideally for a day or more. Let your child choose the activities, the food, everything!

This type of activity can be important for a number of reasons. It communicates to a child about how important they are, it gives them a sense of control when other domains of their life may be out of control and it provides opportunities to discuss and explore how the child has been, how they have been coping, to validate their emotions and potentially try and develop some ideas around how to address some challenges that they may be experiencing. 

Relationships are really important in building resilience in children. While the relationship with the parent or guardian will be the most important, relationships with peers and professionals can be enormously helpful too. Anywhere that a child can feel listened to and supported can help to develop the kind of resilience that may mitigate the impact of some of the challenges. 

Lastly, it is important to note that when concerned about a child; if they really seem to be struggling, if they lack confidence or they seem to have really low self esteem, it is always worth discussing it with the professionals involved in your child’s care; their ophthalmologist, optometrist or just their GP. These professionals will be well placed to discuss your concerns and potentially refer your child for support, from Child and Adolescent Mental Health Services (CAMHS) or a Hospital paediatric psychologist like Dr. Ian McCubbin.

Videos

How to talk to your child about Usher Syndrome

How to talk to your child about Usher Syndrome

Education, Health and Care Plans for Children with Usher Syndrome

Education, Health and Care Plans for Children with Usher Syndrome

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