It’s nearly a year since Matthew was diagnosed is LHON so I thought I’d update what has happened in that year.
Well life carried on!
Matthew loves comedy so during the fringe we saw several comics.
He went back to school last August. It had been decided that he would drop physics and just take four subjects. In music and drama the teachers had known Matthew since S1 and adapted to help him through the course. In maths Matthew had help from a learning assistant who had worked with another teenager with the same condition several years previous – this was a distant relative. In English he had help from the learning support teacher. During the year we kept in close contact with the school having regular young person planning meetings. In May Matthew sat his higher English, Maths and Drama plus advanced higher Music. He had a reader, scribe and extra time for all the exams though he did have practicals in music and drama. The school have been amazing as have the support Matthew has had from the visiting teaching service and educational psychologist. We won’t know until early August with how he got on in his exams. In sixth year he plans to study advanced higher English and Drama hopefully using the extra time to build up his use of technology.
Matthew has been learning how to use a long cane thanks to Grant from Blind Children UK. He has made great progress. Matthew is able to get himself to drama at the Lyceum on his own every Tuesday. He uses an app on his phone to tell him when to get off the bus. He is currently taking part in Summer on Stage at the Lyceum.
Not being able to play Xbox games Matthew has picked up his guitar and improved his playing. Last August with his dad he took part in the beach busk at Portobello. They raised nearly £60 for RNIB. They will be back this August this time raising money for Blind Children UK. Occasionally they can be seen busking in the Meadows Middle Walk – look out for them.
As well as still enjoying his comedy Matthew has continued to attend concerts. In the past few months he has been to The Who, Manic Street Preachers and Taylor Swift.
He has still managed to go to the cinema, though not all films are audio described. A recently opened Odeon has been the best cinema we’ve been to so far.
So although live has changed it has gone on!
Thank you for all your thoughts and prayers. We are adapting and moving on each day.
It wounds pretty much how my son progressed 18 years ago. He completed college, then went on to graudate school. He received his masters degree in English. He also played guitar throughout and was able to attend the Lighthouse Music School. He has just completed hi tenth year of teaching Enghish at a New York City High School. It hasn’t been and isn’t easy, but he accomplishes great things. Nothing is impossible if you put in the work and have a positive attitude. Believing in oneself goes a long way. Life certainly do go on for my son Nick and all of my family, I send you all my best regards as you continue on this journey.
Bronx, New York
SSorry about my post – typos and some English erros: i.e., It was (not wounds); completed his, not “completed hi;” Life certainly does, not “do; family.-not”,”.