LIVING WITH STARGARDTS
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James from Ashby-De-La-Zouch, UK

James’ Story – Received 19 June, 2007, updated February 24, 2009 and September 18, 2014

We have known that there was something wrong with James’ vision since he was 3 years old. Having never passed a sight test in his life we spent many years being told that he was making it up, and simply wanted to be like Harry Potter with glasses.

Eventually, last December, at the age of 10, James was diagnosed with Stargardts. Despite us, as parents, falling temporarily apart, James has coped remarkably well with his diagnosis. I guess he has always seen life pretty much the way he does now and therefore diagnosis made no real difference to him.

The educational support in our part of the UK has been, so far, good. James has been assigned a specialist teacher to work with him in main-stream education. He will shortly be taught to touch type and then given a lap-top computer to aid him in his studies, he will have extra orientation at his new school, and have all his school work professionally enlarged. Given all this, and James’ attitude, it has been hard to remain devastated.

Added to this, I recently met Miles Hilton-Barber, a man who went totally blind in his 20s, and has still managed to climb Everest, abseil down Cape Town’s Table Top Mountain and fly a micro light from Europe to Australia.

Listening to him speak, I experienced what I can only describe as an epiphany. I have been so focused on the difficulties that James will face, the Statementing process and what he will not be able to do, that I forgot to appreciate what he can do. He is an academically bright child, a competent musician, with a surprisingly advanced artistic talent – and we have lost sight of that through the shock of the diagnosis. He made me realize that I was potentially limiting James by focusing on the negative, and I was truly inspired by hearing his story.

We are now making every effort to teach James to have confidence, both to ask for help and to remain focused on his goals – I think that is by far the best thing that we can do for him.

Update February 24, 2009
James made the transition to middle school over a year ago and is doing really well. It has not, however, been completely plain sailing – we have had difficulties explaining the condition to all his different teachers and getting them to understand that just because he doesn’t wear glasses it doesn’t mean he sees well. At one point they just kept photo-enlarging his work onto bigger and bigger sheets thinking that that was all that was needed.

The local visual impairment unit supports him in school , he has been provided with CCTV systems, a lap top computer, reading domes etc. He is now a proficient touch typist and despite being a typically unfocussed 13 year old boy, he is in the top set for all subjects in his school.

We have had to learn to overcome practical issues (he has an A4 file for his work rather than exercise books), and as parents we have had to loosen the apron strings and let him have some freedom. The school make sure that he has one to one attention in subjects where he might injure himself (science, PE, woodwork etc.)

The condition seems stable for now, and as usual he mostly accepts it as just the way he sees. He is very lucky with his friends. They make the necessary compensations for him, pointing out people in the street, searching for him when he loses them in the playground and reading what’s on the board when the teacher forgets.

All in all things have been OK so far, we have accepted that James sees how he sees and that he will do well despite this.

Update September 18, 2014
James continues to be his usual pragmatic self! He is now 18, and is enjoying all the things that means in the UK including going out to the pub with his friends. He is a typical teenager, and is really good fun to be around (most of the time).

He has recently sat his A’levels (post-18 exams in the UK) and achieved the grades that he needs to attend university to study Materials Engineering. He leaves home in 3 weeks’ time to move into university halls and to start his adult life. We are so proud of what he had achieved, and more importantly he has done it without ever once blaming or falling back on his disability.

We have learned to make the small necessary adjustments such as always speaking out loud rather than make facial gestures, or giving him whispered directions to where things are when we are outside the house. His younger brother has become an accomplished guide when it comes to bathrooms in strange places – the signs are not always easy to decipher. His friends are amazing, and know to keep track of his whereabouts when they are out. Crowds present the biggest challenge for James, he simply cannot see where his friends or family are and this has probably been his biggest Stargardts frustration.

We thought that James might be upset as all his friends learned to drive, but this was not the case. In fact he has recently learned that his friends will act as an impromptu taxi service for him, picking him up from his girlfriend’s house and bringing him home!

We are very proud of the young man James has become. He still refuses to let his disability limit him, and has found a way to cope with most things. I don’t think that I am any more nervous than any other parent about to see their child off to University. To say that his Stargardts doesn’t affect us would be untrue. We refer to it almost daily, either when we check in with James to make sure he has seen something, or when we catch ourselves nodding to him instead of speaking aloud, or even when we make a joke about it. But, we have never allowed it to be an excuse, and have insisted that he achieve his best despite it.

I am terrified of him managing when he leaves home, but importantly, he is not.

Nicola Burns