27 March 2018
We’re marking World Down Syndrome Day with a guest blog.
It’s been written by Louisa. Her brother Jeremy, who is 25 and has Down’s syndrome and Type 1 Diabetes, has just completed his Gold Duke of Edinburgh Award and is a member of the Swindon DSActive team.
It’s always been important to Jeremy to achieve the same things as his siblings. He doesn’t see himself as any different from myself and his two brothers. He wanted to do his Gold Duke of Edinburgh because we had. When he started, none of us had any idea of the impact it would have on him.
Nearly two years ago, when he was 23, he moved home after his supported living placement collapsed. He needed something to do, a reason to get up in the morning and something to achieve…and the Duke of Edinburgh Award appeared came at just the right time.
He needed to finish it before his 25 birthday. He’d started his bronze but hadn’t been able to complete it and he had to decide whether he would try to finish his Bronze or head straight to Gold. Going direct to Gold was going to take longer and be harder, but there was a potential trip to Buckingham Palace at the end of the Gold award, so it was an easy decision!
He had to choose a physical activity to do for 18 months, learn a skill for 6 months, and he had to volunteer for 12 months as well as going on an expedition and a residential trip. He chose Zumba for his physical, cooking/mindfulness for his skill and helping out at our local elderly lunch club for his volunteering. For his residential he went to Poland for a week with a youth charity.
Moving home was a big step for Jez, and it took him a while to settle in. He missed being around people his own age, and he craved friendship. Half way through his Duke of Edinburgh he lost his paid job in a local supermarket. His confidence, mood and motivation hit rock bottom and it was as though he’d lost his identity along with his job. To him, his job meant everything: he was working and earning and being as close to totally independent as possible, just the same as everyone else.
We needed to find something that would help him to come to terms with his loss, as well as creating some kind of new identity and get him back on track with his Duke of Edinburgh. At almost crisis point, we discovered DSActive Football! I drove Jez up to the Swindon Town DSActive group and immediately saw a change in him. He finished his first session with a ‘new signing’ photoshoot, Swindon Town kit and a team of new friends as well. As I drove Jez home, he told me about his new plans to become a professional player. His mood, and ambition, was completely changed – he was back to being himself!
This was just the beginning. Ever since that first session his confidence has grown as have his football skills! None of us, his siblings, ever really played much football so this is something unique to him which is also fantastic for his sense of self-worth and his ability to directly compete with us to be his own person.
For his Gold expedition in August last year, he had to camp for six nights and walk for five days in the Brecon Beacons with a team of people he’d never met before. We were worried he wouldn’t cope. However, except for not showering for the duration (his choice!), he survived and even managed his own blood sugars the whole time by himself.
At the end of January Jez finished his year of volunteering, the last element to complete of his Gold Duke of Edinburgh. The whole experience has been incredible: all the challenges he’s had to overcome to finish it have made for an exciting 18 months. His confidence, his ability to achieve things he didn’t think he could, and his pride at achieving the same thing as his siblings have all contributed to a huge positive change in him.
Jeremy has been invited to collect his Gold Duke of Edinburgh certificate from Buckingham Palace in May. He’s hoping to go up to London in a pink stretch limo! That’s a real indication that not only has his usual level of ambition and confidence returned, but after a long two years, so has my brother.
A huge well done to Jeremy on his achievements from the DSActive team! If you would like to send us a story so we can celebrate your achievements then email us on dsactive@downs-syndrome.org.uk