Kristian is the close friend of a friend, a hardworking single Dad, a gaming expert, a cheeky comedian and the nephew of a man who has Down's Syndrome.
Please read his heartfelt words about his Uncle Martin who is nearly 50, and how times have changed for those with the condition. But have we got our priorities wrong?
My Uncle Martin is approaching his 50th Birthday. He was my grandparents second child, following a gap of almost 10 years after his sister (my mother). They had already started their family later than many at the time following my Grandfather’s enlistment in the Army during WWII. There were no controversial screening programmes back then so they didn’t know he had Downs Syndrome until he was born.
I don’t know exactly when it was that I became aware that my Uncle had Downs. As a child yes labels do exist, but until you understand them they aren’t how you define something or someone. To me he was always just Uncle Martin. The one who would sit with me for hours watching The Dukes Of Hazzard and Knight Rider, amongst others, and get the same excitement from them as I did. Always picking me up for hugs joining in with whatever game I’d decided to play.
He has not achieved what many would consider great things in his life. He has no qualifications. Has never been the face of a brand or broken down barriers. Has never had a job and he has never lived independently. Aspirations I’m sure many of you reading this will have for your child. Sadly they won’t all achieve them. But does this mean their life will be unfulfilling? That they will not be happy and content? Ask Martin.
He was born in the mid 60’s. A very different time for people with disabilities. Most of his education came from my grandparents at home. He attended little if any mainstream school. Certainly nothing beyond Primary level. His interaction with other children beyond the neighbours was done at groups and centres where all the other children were similarly disabled or were siblings of children with a disability. Into adulthood he attended day centres which were not just about respite for my grandparents. Working alongside other people with disabilities he would normally attend Monday thru Friday, transported to and from the building by mini-bus. From what I understand it was almost like a normal work environment. They would produce jigsaws and similar products that were sold to help raise funds for other activities. Sadly over the years, government funding for things like this has all but evaporated. He still attends a much more limited version to this day, although it is now only two part days per week.
In late 1988 my Grandfather, who had been providing sole care for Martin since the death of my Grandmother only a couple of years earlier, died suddenly. For a while his older brother who lived close by took Martin in. However as a man of nearly 70 in deteriorating health himself, this could never be a long term solution. My mum was in no position to take him into our home as a single parent with two children under ten. Much as I could see, even then, that the alternatives were limited and not very appealing to her as his sister.
Thankfully, through a friend’s recommendation, she found a place at a very, very special residential home. It was family run and catered for people with a variety of mental disabilities. He would have his own room and be encouraged to live as independently as he wanted to. Residents were offered the opportunity to take part in the preparation of all of the meals that would be eaten together. In the grounds of the house the owners kept chickens and grew vegetables, which again were activities that everyone could be involved in.
He has lived there now for 24 years, many friends have come, and sadly gone in that time. It very much feels like a family when you visit as familiar faces greet you and ask how you are. He has been very lucky to find such a warm, family orientated environment. Whenever I see him he always has something to tell me about what he’s been doing or what he’s looking forward to doing. He takes great pride in taking part in community events where the home opens it’s doors to the public to sell excess fruit and veg grown in the ever expanding corner of the garden dedicated to that activity.
Even now his sight is weakening and his legs give him all sorts of discomfort there is always a smile on his face and a practical joke to be played. He doesn’t like it that I’m now the one who picks him up for hugs though...
I’m sure that many of you who read this will be horrified by the thought of your child ending up in a residential home. That there is no way that is something you could/would ever contemplate. My grandparents would certainly have been too. But for me, the years he has lived there have been the happiest and most inclusive of his life. He operates more independently now that I ever believe he would have had he continued to live with family. He comes out every Saturday and spends the day with my mum and now my son, who my mum provides childcare for while I work. I’m proud to say that he, like me, doesn’t see the label. He knows Martin as the one who watches Doctor Who and Transformers with the same excitement as he does. I supposed in that sense Martin has achieved barrier breaking. My son will be more understanding of disabilities as a result of their time together.
So, back to my point. The reality is that despite all the wonderful, positive changes today in how it is handled, not every child born with Downs will achieve everything their parents aspire for them. Certainly I feel that including people born with the condition in mainstream education with support and encouraging them to play whatever part in society they want to is the right thing to do. Who knows what a difference having that opportunity would have made to Martin’s life. But do I think that not having those chances has made his life any less fulfilling and, for want of a better word, ‘happy’? No I do not.
And for me, that last part is the most important. Surely that is everyone’s dream? To be happy. Not just those that are not as able as the majority.
Today there are so many options for adults with Down syndrome. I talked to a person recently, also with an uncle with DS, and he said when his Uncle moved into the group home he genuinely blossomed from the new-found independence and friends surrounding him.
I'm glad he has you to give him picking up hugs.
My son my move into a group home someday, but I'm in no rush :)
Thank you Mardra. I will pass on your thoughts to KDelete
what a lovely storyReplyDelete
I too am so glad K shared it with us all.Delete
Thank you for sharing your uncles story.sending your uncle a big hug from Barnsley xReplyDelete
I will pass the hug on to K. Thank you for reading his story.Delete
Thank you so very much for sharing yours and your Uncle Martin's story. I agree wholeheartedly with all that you say. I also feel very keenly all the emotions you refer to; my 7 year old, Jake has DS and his presence in our family has enabled his 3 older siblings to grow into tolerant and understanding, patient young people. I am very proud of them all. I think we're making some great progresses in society right now, but there's still a way to go to ensure there is sustained support out there for all.ReplyDelete
You have hit the nail on the head. Our children teach those around them so very much. We make strides forward, with set backs now and again. But we will get there :)Delete
I feel the depth of the love. I came across the downssideup blog in a magazine and am sitting down to read. Inspirational happy people. I salute you all.ReplyDelete
Thank you for taking the time to visit Downs Side Up. I'm glad you enjoyed what you found. Much loveDelete