Toolkit: Social and Emotional

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Diagnosis of Stargardt’s typically happens between the ages of 10-20 although it can happen when younger or older. A diagnosis can feel like a grieving process for the Child / Young Person and the family.

Families can often feel a sense of shock on diagnosis. This is because being a rare condition, they may have never heard of the Stargardt’s before. In addition the CYP would not have been born with sight loss and the family are having to adjust to this new way of life.

The progressive nature can mean the CYP and family are facing the unknown as are unsure when and how the vision will be change. This undoubtedly will cause anxiety as will need to review new skills.

As well as adaptations for the school, there are a lot of adaptations needed to consider for the CYP and their family. The progressive nature of the condition can cause anxiety and the constant need to review the needs of the child as well as the CYP having to learn new skills.

Stargardt’s can be seen as a hidden disability. This can cause issues when the CYP is trying to advocate and explain their needs to peers and staff. Know that not all disabilities are visible and that visual impairment is a spectrum.

The child / young person's voice is so important. Ask them what is helpful to them; teaching staff to have a conversation at the beginning of academic year, to make the CYP feel comfortable, to talk about what is useful and helpful for them.

Having a key person to speak to within education setting that the CYP can go to is really helpful.

Learning self-advocacy is a key skill and the CYP may take time and need support from their wider support circle to develop. It is crucial that the education setting listens to the CYP needs and wants when they do self-advocate.

Self-advocacy can take different forms. This could be communicating through email, face-to-face or using their key person to express their needs to other staff if need be.

Develop their own 'bank of phrases' to explain their condition with the support of parents and professionals.

Opportunity to meet other people with Stargardt’s and Vision impairment so that they are not isolated and can share experiences: These links may be useful:

Peer awareness training on regular basis (this does not have to name or be specific to a CYP, but can be with general reference to visual impairment)

This needs to be considered in consultation with the CYP / family, and in accordance with their preference. The strengths of the CYP should be acknowledged as well as their needs.

Encourage open and honest discussions (see also Parent / Carer Support).

School to consider the CYP having a named older mentor / buddy to support and facilitate social situations if needed.

Advocacy development: boundary setting with peers.

Option of therapeutic avenues such as play therapy / talking therapies / counselling to talk through feelings and emotions etc.

Support the CYP where they can meet friends at lunch and break-time.

In their own words

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

Having a bank of phrases which I can easily use to explain my condition has made it so much easier to let new friends know.