Our son Joshua was born with oculo-cutaneous albinism in 2003. It was a surprise to both our families as no one on either side had any recollection of anyone in the family having albinism.
The thing that has affected Josh most is his visual impairment. His eyes let in too much light due to the reduced pigment and he has nystagmus.
Josh was diagnosed aged 2. We had no idea there was anything wrong. We wondered why his eyes moved from side to side but he had coped perfectly as a toddler, learning to do everything when he was expected to and generally being loud and laughing a lot.
“Where have been some mile stones in our 13 year journey so far, with many more to come I’m sure!” Jamie Fuller
The key for us is to build strategies for situations and approach everything with a ‘how can I do that?’ attitude. Yes, we have to modify and adapt, but most of the time it works and even if we don’t ever do it again at least he can say ‘I’ve done that’.
We are now two years into senior school and Josh is in top sets for everything. He no longer has support in school and is fiercely independent. He uses an iPad and his teachers are aware of his needs.
The one area that remains difficult is team sports. From an early age we never discouraged team sports, but directed Josh towards sports he could do with a group of people rather than in a team. At the age of 9 Josh achieved his black belt in Tae Kwon Do. From a very early age he could swim like a fish. He has dabbled in other sports like kick boxing, but his main and true love has always been skiing.
Josh learnt to ski on family holidays from the age of 3 and immediately enjoyed the freedom and speed that came with it. Year after year he became more competent and about 2 years ago he asked if he could race in competitions.
“All the things Josh can’t do well evaporate the moment he gets on the slope.” Jamie Fuller
Josh skis with me as his guide. We communicate through headsets with me describing the terrain, the direction and obstacles to avoid. Getting into competitive skiing was difficult. We approached our local indoor ski centre but they were, at that time, unwilling to take a visually impaired person in their classes. We then approached Disability Snowsports. We joined them every month for a recreational session but this was not enough for Josh, he wanted to race!
Through contacts at the organisation the Paralympic Team GB Coach became aware of Josh and after many meetings, tests and discussions Josh was advised that he was not visually impaired enough to be classified by the IPC. So what now? Not visually impaired enough to be trained by that team and too visually impaired to ski without a guide.
We approached the ski race team at our local ski centre and asked if we could join them. We explained the situation, and they were very accommodating. Finally proper slalom race training began. Training is great, but Josh still wanted to race! Many emails later and with the help of lots of other enthusiastic people we are now racing in able bodied competitions. We have to abide by their rules and Josh doesn’t get any allowances in time for his visual impairment, but he regularly hits middle of the group for his age, something he is very proud of and something that boosts his confidence.
We have seen Josh progress at such a rate through skiing. He can’t ride a bike at 10mph and yet he can ski at 40mph easily and freely. Although Josh is awesome he is not alone, we ski with several visually impaired skiers, some far more impaired than Josh and they too experience freedom on snow.
“So there is something in this. I urge you to come and give it a go!” – Jamie Fuller
Do you want to learn to ski?
We have organised a few trial days for complete beginners and some sessions for those who already ski and would like to improve.
Learn to ski from just £11 per hour in Manchester, Hemel Hempstead, Milton Keynes or Castleford.
If you can already ski, string several turns together and stop confidently, we can offer monthly sessions of 1-2 hours for around £15 for you and your skiing guide.
Please contact us here to register your interest and we’ll let you know when and where.