Toolkit: A Personal Account

A huge thanks to Helen (mum) and Faye (CYP with Stargardt's) for their brilliantly honest account of their experience as a family with Stargardt's Disease, and what has helped them along the way.

Parental Support

Receiving your child’s diagnosis is a shock and coming to terms with the implications of sight loss for your child is a grieving process for your child, you, and your wider family. Understanding what it means to be visually impaired, and accepting sight loss may take years. This is to be expected. Having a progressive condition is likely to mean your child will undergo cyclical patterns of grief over time. This will undoubtably have an effect on you too.

Take heart from the fact that the visually impaired community is extremely warm and welcoming and aim to reach out to sight loss charities for support when you feel you can. They can provide reassurance, information, and hope for the future for both you and your child. Guide Dogs have a family support service and RNIB run courses for parents to support them in the early days of a diagnosis. Members of the Stargardt’s Connected community will understand specific challenges your child may face and how this may impact on you and your wider family.

In order to support your child (particularly if they are diagnosed in their teens), make sure you have someone to talk to and share your worries with. Try to encourage your child to listen to or speak to others from the VI community if they are receptive to this and continue to encourage them to access counselling or mental health support as time goes by. Sight loss is a traumatic and life changing event which shouldn’t be underestimated. That said, it’s important to recognise that your child’s life isn’t over, they will just need to learn new skills to help them achieve their goals for the future.

Don’t be afraid to gather a team around your child to support them and meet their needs. Central to this is a good relationship with your child’s school and staff members. Not all areas of the country will offer the same levels of local authority support and whilst your child may not receive a legally binding ‘Education Health Care Plan’, this doesn’t mean they aren’t entitled to have their needs met both in and out of the classroom. In time you will need to increase your confidence and ability to explain and advocate for reasonable adjustments in all areas of your child’s life.

Social and Emotional Wellbeing / Communication and Interaction

Losing your sight after what you believed to be a fully sighted childhood is huge. It is an enormous adjustment and can really rock your sense of who you thought you were and who you believed you were always going to become. Be prepared to lose both confidence and motivation at times throughout your sight loss journey.

A diagnosis of Stargardt’s is unique in that you weren’t born without sight, you didn’t lose vision as an infant, it didn’t happen overnight, no one can say exactly how quickly it will progress and at this point there is no cure. There are a lot of unknowns, and as a young person with sight loss, you are a minority within a minority disability. You probably won’t have any additional needs and to start with at least you won’t look ‘blind,’ which will make it difficult to explain what is happening to you to those around you. This may make you unlike anyone else with sight loss your family or school community has come across before. In addition, you can’t compare your sight to that of your family or friends, as you have probably never seen how they see anyway, and there are no useful ways to describe what the loss looks like to you, only how it affects you.

As a teenager you may be highly resistant to doing anything which makes you different to your peers and you may well not want to be ‘outed’ in front of your classmates or made to feel that you need special treatment. You should educate your school staff on what you need from them in terms of respect and discretion. This does not need to be done face to face and could take place through a ‘Things you need to know about me’ type document.

Having a named person within your school setting that you can go to when things get difficult is really helpful. They may be able to resolve issues of seating, resources, homework extensions etc, as well as being someone you can discuss your fears or worries with e.g. around transition, revision, and exam times.

When and how you tell people about your sight loss should be on your terms (though you will have to accept that some key adults within your life will have to know for your safety). Not everyone needs to know straight away. You could start by telling close family members and friends, and others you currently go to school with or socialise with may potentially never need to know. That said, young people tend to be both tolerant and understanding of difference, so don’t be afraid to explain your difficulties to others in simple terms and to ask for help if you need it.

It is important for your friends/school staff to know the limits of your vision e.g. that you can’t see where they are as you enter a room, their facial expressions during conversations, where they are pointing etc. Ask them to use your name rather than smiling or waving, to agree to meet you in particular places at lunch and break times, to wear brightly coloured clothing if you are trying to follow them when out and about, and not to be offended when you seem to ignore them in busy places. You’re not being rude; your vision just misses subtleties.

Try not to compare yourself negatively to your peers. They are probably going to have a longer concentration span than you and they can probably read and reply to text messages and complete homework tasks more quickly than you, but that doesn’t make them ‘better’. You wouldn’t expect someone with a broken leg to win the sprint at sports day, so you must accept some of your limitations, but it’s equally important to try and level the playing field, so that with appropriate support and plenty of effort you can still achieve what you’re capable of.

Self-advocacy is a key skill you’ll need going forward as a visually impaired person. Take all the opportunities you can to speak up for yourself and for others too. As your confidence grows, consider attending an online self-advocacy course through a sight loss charity like VICTA to help with this. At some point in your educational journey you won’t have a parent or trusted support assistant available to speak for you, so it’s good to start practising within your comfort zone whilst you can.

Self Help and Independence

Be aware you will need support to orientate yourself in unfamiliar or poorly lit spaces.

To keep safe, be willing to speak about your difficulties and ask for help if necessary.

Ask for support when you need it. You may need someone to check the colour of something you wish to buy, or its price tag. You might need a friend or family member to check the contents of your bag, your hair, or clothing before you leave the house.

Over time take opportunities to learn effective communication and negotiation skills.

As your confidence grows, take opportunities to make new friendships / relationships.

Show an interest in the range of technology available for visually impaired people, from talking kitchen scales to screen readers.

Learn how to plan and take journeys and to explore how APPs can help you to navigate new places. Apply for your free bus pass and buy a disabled person’s railcard!

Make the most of your VI status and get out and about. Research seat concessions at cinemas, reserved seating / touch tours at theatres, express queues at theme parks, disabled access areas in concert venues, free entry, or audio tours at museums.

Outings and regular activities may no longer be as spontaneous and may require more careful planning, but with some adjustment they will still be possible. You may just need to plan your route/meeting point in advance, book particular seats, travel with a friend and read a menu online before ordering in an unfamiliar restaurant.

Remember when sight-seeing, you can always take photos and zoom in on images to see what others can.

Take the opportunity to learn independent living skills well before you leave home and whilst you still have some useful vision.

Seriously consider habilitation support, undertaking basic cane training and possibly learning Level 1 Braille before your sight loss progresses.

Don’t place limitations on yourself or allow others to do so.

Celebrate your accomplishments and try not to worry unduly about the future.

Take chances and try new things. Ask questions about how activities can be adapted for you. You may be surprised what you’ll be able to do!

Look for volunteering opportunities and chances to gain relevant and meaningful work experience. This will look great on your university application form or CV in the future.

Above all make time to do the things that you love. Life for the next few years will be tricky as you adjust to your visual impairment, so it is important to find time for fun and joy every week, especially during stressful times in the school year.

Where possible try to find ways to relax that aren’t going to add to your eye strain or overall fatigue. Chatting to friends in person, rather than on social media, for instance going for a walk for a change of scene or closing your eyes listening to an audio book or podcast.

Cognition and Learning

Plan well ahead for transitions and visit possible new settings at least once. Don’t be afraid to ask lots of questions until you (and your parents) are satisfied with your choice.

Practice routes to a new school in advance and ask to visit before the start of term to meet key staff and begin to find your bearings.

Request to be in a tutor group with someone familiar, so they can help you feel more confident at the start of each day and orientate you in the early weeks.

Ask to sit with certain people in lessons for moral support and practical help, if you feel that will increase your confidence, access, or enjoyment of a subject.

School staff training is vital to your success, as is good communication to facilitate regular meetings between your school / teachers, parents / carers, and outside agencies.

A ‘Learning Profile’ created by your school SENCO should be given to all of your teachers and support staff to explain what you will find difficult and how they can best support you.

You will need to be at the front of class for all modelling and practical demonstrations. You will need to be able to have a closer and longer look at new things.

When reading, even short amounts of text, you may make errors and experience fatigue. You may prefer not to read aloud in front of others.

In order for you to access diagrams, they need to be made bolder, simpler, and clearer. You may need to be told what it is that you are looking at, so you can focus.

You may particularly struggle to interpret graphs or scientific diagrams if they are not large or clear enough.

You are allowed a margin of error when reading / measuring scales, angles, or lines.

You may struggle to see the lines or squares in standard school exercise books and may need to use lined paper with thicker black lines.

You may find it hard to read your own writing back unless you use thick black pens.

Learning to touch type is a vital life skill and will be useful for you moving forwards. You should begin to learn to do so as soon as possible, even though you may prefer to continue to write when you are first diagnosed.

You will require adapted worksheets and resources in all lessons. Printed materials should be presented in your chosen font size (which will change over time), on A4 paper.

Simply enlarging A4 worksheets up to A3 doesn’t work as the font size is usually too small, which can be both frustrating, and tiring to read.

In high school it may be useful to have PowerPoints emailed to you in advance of lessons, so that you can read them beforehand.

All PowerPoints for lessons must be presented to you with high contrast and using bold, dark colours. Teachers may forget, but it is important that they are reminded of why this is necessary for you. E.g., “I really struggle to see pale colours or similar colours together. This means I can’t read yellow text on a white background, or orange text in a red text box.”

Whilst accessible versions of revision guides and textbooks are available, school staff should be aware that it will take you longer to locate pages/extracts electronically.

You will require extra time to access all tasks. Following information will take you longer and require more effort. School staff should be mindful of your workload.

You may be entitled to extra support – e.g., revision classes, in key school years.

All exam and revision materials need to be enlarged and modified appropriately.

You may be entitled to 25%-50% extra time in assessment situations. This includes class tests and mock exams as well as formal examinations.

You should take your exams in a smaller room, to restrict distractions. You are entitled to reasonable adjustments like a digital clock at your table or scheduled rest breaks.

Revision can be difficult if all your friends are reading textbooks and using flashcards, but there are some excellent online resources to help. Seneca Premium costs extra, but the text can be read aloud, which will save eye strain at the end of the day.

There are also some excellent teachers on YouTube. For example Mr Salles (GCSE English), GCSE Maths Tutor and Free Science Lessons.

Physical and / or Sensory Needs

A diagnosis of Stargardt Disease means you will lose your central vision. This may require you to look at things in a different way to make the best use of your peripheral vision. In a classroom you will need to be seated near the front /centre of the class and you may need to move during lessons to see better. You may also have to adjust your head position to look at the whole of an object or a worksheet.

Physical and emotional exhaustion are a key feature of having a visual impairment. You are likely to have to put in more effort than your peers, you may work significantly more slowly than you once did, and you may also need regular rest breaks during the day.

Your vision will be reduced, but it may also fluctuate due to the time of the day, the lighting, and the stress you are under. This will lead to you missing information in both work and social situations and there may be no way for you to predict how well you will cope with lessons / tasks each day.

Visual fatigue may mean you experience headaches and strained eyes at the end of a long day. This can make completing extra work and revision at home very challenging.

Though you may wear glasses, they will be unable to fully correct your vision.

You will need to wear dark prescription sunglasses when you are outside, to help preserve your remaining vision.

You will need good lighting to be able to see. Light needs to be evenly spread around the room, without dark spots, shadow, and glare.

You will have significantly reduced vision in dim lighting and difficulty when moving from different lighting conditions, e.g., light to dark, as your eyes take time to adjust.

As your distance vision and visual field is likely to be reduced, you will require verbal cues, praise, feedback, and verbal descriptions from teachers rather than gestures.

Written materials will need to be adapted appropriately, and when presented electronically you should be able to change the contrast and use magnification tools.

If you need to use an iPad to access lessons, this may well slow your ability to find and access materials at speed and affect your ability to keep up with the fast pace of some lessons.

Fast moving objects and people will also be much more difficult to keep track of, which may impact your ability to access and enjoy certain aspects of PE, e.g., ball sports.

Risk assessments should be carried out and acted upon in advance of any extra-curricular or non-standard school activities (e.g. school trips, activities involving water, overnight stays, night time activities etc).