World Down’s Syndrome Day: Luke and Anne

This year, World Down’s Syndrome Day is focusing on the friendships and communities that develop around people with Down’s Syndrome. Anne, Service Manager talks about her experience of “My Friends, My Community” with her son Luke, who is 19 years old.

Luke was in mainstream education until he was 16 and, whilst he was ably catered-for academically, the social void between him and his peers grew exponentially over the years. Particularly at secondary school, as everyone hit puberty and hormones started racing around, it seemed as though most of the pupils had other preoccupations. Add GCSEs into that mix and inclusion went right out the window. Luke found it easier to withdraw, to the extent that he was eating his lunch outside in the middle of winter.

Despite approaches to involve him, he preferred his own company.

Luke is now in a specialist sixth form provision and seems to be generally far happier and talks about his friends. He has developed patterns of social behaviour that he uses when meeting people in different situations. These will vary depending on who he is meeting – he will play the clown or sometimes become extremely religious and pontificate about life and death. He will greet everyone enthusiastically and even have a little chat but, as soon as he is able, he will retire to the comfort of his own company, seeking space where he can be alone. When visiting friends or relations, he will prepare a bag with a couple of books to take with him.

He has a girlfriend and yet, like many blokes, does little to make it work. She has moved far away and all the calls are incoming!

Luke lights up a room. On the occasions when he has been away, we miss him. He leaves a gap behind. As he struggles to make sense of the world around him and comes to terms with his disability and the complications that brings, he never stops trying and that, I think, is what brings such joy to the people around him.

For the moment, friendships are often a result of being in a specific social setting with others. The friendships don’t necessarily exist outside of that setting. Social and communal activities for people like our son will continue to need facilitation. They will continue needing to learn and develop as individuals, to develop understanding and empathy, compassion and depth. True friendship has all these things and I believe that our son, one day, will discover this for himself – with a little help along the way.

As well as Anne and Luke below, you can also read about Marianne and her son Alex here, plus Kim and her daughter Becky here.

#WDSD16 #MyFriendsMyCommunity