Image of a Mother with her child sat on her knee with a doctor looking at the child with a stethoscope, above them in an eye under a magnifying glass. Early Years Parent Advice workshop, What can I do when my child is identified as having a vision impairment and what support can I expect? Tuesday 28th June at 7:30pm on zoom, www.look-uk.org

Early Years Parent Advice Workshop – What can I do when my child is identified as having a vision impairment and what support can I expect?

LOOK UK and VICTA have teamed up to host a parent advice workshop focused on managing the emotional and practical challenges following diagnosis of a young child with a vision impairment. The workshop will also consider the early years and support pathways available from diagnosis.

Our panel for this online event will include both professionals and ‘lived experience’ experts from within the VI community.

Paula Thomas, Eye Clinic Liaison Officer at Great Ormond Street Hospital and Barbara Dunn, Young People and Families Coordinator at Vision Norfolk will discuss how they offer tailored support to families whose child is diagnosed with a visual impairment.

We’ll hear from Sydney May, Sussex Mentor Officer for LOOK UK who lost her sight as a baby to retinoblastoma, a form of cancer of the retinas which is rare to get in both eyes. Syd will discuss how hospital visits and diagnoses have been a regular fixture in her life but also how she has tried her best not to let them define her.

Syd’s Mum Mel will share how she managed the appointments, new diagnoses, relationships with hospitals and professionals, and her life bringing up a blind child.

Eunice, a parent with a delightful blind toddler, Ella, will reflect on what she has learnt in the last few years, the best advice she has received and how she and her husband ensure Ella reaches her milestones and takes a full and active role in family life.

The workshop has been designed to be both informative and supportive – full of useful ideas on how to navigate the new world you enter after diagnosis and who can help.

There will also be a follow-up session on Wednesday 6th July where participants can share practical advice and tips based on their own experiences.

Meet the panel

Paula Thomas- Eye Clinic Liaison Officer at Great Ormond Street Hospital.

Paula in a blue hooded top with guide dog Inca and leading a horse called Bertie.

I have been the ECLO at GOSH for ten years and support any family whose child is a patient with us in ophthalmology.

I have been the ECLO at GOSH for ten years and support any family whose child is a patient with us in ophthalmology.

This support can often start with a phone call or email prior to the appointment, being present during the clinic and the early conversations with the ophthalmic team.

I offer emotional support as well as practical advice during the appointment but also via email and telephone conversations afterwards.

Often, questions and concerns come up between appointments and I recognise that support needs to be available when these questions arise. No question is ever a silly one, for me it’s about what you can do rather than what you can’t do, helping parents think about how to make small changes to make big differences.

The early stages of a diagnosis are always the hardest and so for me, tailoring the support for each individual family is massively important. Every child is different, every family is different, and there is never one answer.

Barbara Dunn- Children, Young People and Families Coordinator, Vision Norfolk.

I joined Vision Norfolk in November 2019, but I have been familiar with Vision Norfolk as a client for several years before then as my son Marcus (then aged 7) lost much of his sight when he was diagnosed with an aggressive form of leukaemia in 2014 receiving treatment at GOSH.

When Marcus lost his sight I found it very difficult to accept that he was no longer able to take part in some of the sports and activities that he and his friends would usually do.

I discovered Vision Norfolk by accident when I went to purchase some visual aids and started attending the activities and events for Children, Young People and Families.

I was delighted to be offered the position of Children, Young People and Families Coordinator, and I have since then undertaken the Eye Clinic Support Studies Course at University College London, to enable me to provide more support to families as a Paediatric Eye Clinic Liaison for Norfolk.

I liaise closely with local and national agencies to support families and to ensure that the needs of Vision Impaired CYP are met as fully as possible.

Sydney May- Sussex Mentor Officer, LOOK UK

Sydney sat in a restaurant with her laptop on the table in front of her wearing a black floral shirt.

I’m Sydney, 30, blind, a loving guide dog owner, musician and life coach as well as Sussex mentor project officer for LOOK.

I lost my sight as a baby to retinoblastoma, a form of cancer of the retinas, very rare to get in both eyes. Cancer has a nasty habit of reappearing which meant I had to have regular check-ups to make sure it didn’t reappear throughout my childhood.

The radiotherapy which killed the cancer also unfortunately did a good job of destroying my eyes meaning they have been deteriorating over the years. Last year I had my right eye removed and as I write this, my left is being removed the day after tomorrow.

As you can tell, hospitals have been present throughout my life, and I am sincerely hoping their presence in my life is about to dramatically reduce with the absence of those problem eyes.

 I will tell you all about my experiences of long periods in waiting rooms, the tension every time you’re expecting to receive bad news, the less expected deteriorations, as well as the good news, because of course it’s not always bad news.

While hospital visits and diagnoses have been a regular fixture, I have tried my best not to let them define me. I have used my experiences and trained to be a life coach and mentor. I have managed, for the most part, to turn my experiences into positives, and used them to help me appreciate the life I do have, after all, I had cancer, I may not have had a life at all.

I’m also a musician as I mentioned and play bass in a signed band where I am based in Brighton.

It’s hard to be grateful for the life you do have in some moments, particularly the ones in hospital rooms, but we need it to keep us going.

How to register

To register your interest in attending this workshop please click on the link below.

Event Details

Tuesday, 28th June 2022, 19:30

FREE

Online

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