Down Syndrome effects roughly 1 in every 1000 babies born in the UK. It is a condition caused by the presence of an extra chromosome in a baby’s cells. Despite popular belief, Down Syndrome is not an illness or a disease – individuals living with the condition are not ‘sufferers’ or ‘patients.’
Here, in honour of Learning Disability Awareness Week, Courtney Lange, whose older brother Tom lives with the condition, shares her experiences.
Steps Training: Tell me about your brother, Tom
Courtney: Tom has always been mischievous. He could always be found where he shouldn’t have been – trying to ride the goats usually! Tom has a wicked sense of humour. He used to hide in the kitchen cupboards to avoid having a row after misbehaving when he was younger!
He’s also very gentle; he’s always been a very nurturing sort of person.
ST: Does Tom have any obsessions or compulsions?
R: He collects plastic bottles under the bed. Mum has to clear them out when he’s got too many.
ST: When did you first realise that Tom was different to other children?
R: I knew from a young age. I remember being a bit worried that people would bully him, but I noticed the staring more than I noticed his differences. I never knew why people were staring.
When we were little, I remember someone cutting in front of Tom in a queue – they said ‘he won’t care, he doesn’t know what’s happening.’ It’s just so ignorant. Of course he’ll care. He’s got a learning disability, he’s not completely unaware of what’s going on around him!
You can forgive children for staring, most of the time they’re just curious, but adults should know better. Some people look disgusted and it’s just so judgmental. They don’t know my brother.
I noticed the staring more than I noticed his differences…
ST: What about in school?
R: Tom attended the same mainstream school as me until he was 12. He was never bullied – everybody loved him!
ST: Tom is your older brother. Does it feel this way, or do you have to take responsibility as though you were the elder sibling?
R: I feel I’ve grown up more quickly because of Tom’s disability, but it’s never felt like a chore to me. I love him so I’m happy to care for him. He’s my older brother – he calls me his ‘little baby’, but I have always had to take responsibility over him.
ST. Did you ever suffer as a result of Tom’s disability?
R. I never missed out on any big opportunities because our parents always treated us equally. Sometimes we (Courtney and her younger brother Morgan), had to go to our grandparents’ when Tom was in and out of hospital, but we never missed anything major.
ST: What are the best and worst things about your brother?
R: The best thing is his wicked sense of humour. He once left the house, we couldn’t find him anywhere. When we eventually caught up with him, he was in the corner shop, being given free sweets. He gets away with everything!
When he was younger, Tom would get frustrated. He didn’t understand why he wasn’t physically able to do certain things, which would lead to him becoming emotional. He would throw tantrums which could be quite scary – I knew he wouldn’t hurt me, but Morgan was always nervous when it happened. It was awful seeing how upset he would get because things were just too difficult for him, then seeing how sorry he was. I’d say that’s the worst thing about his condition.
ST: What does Tom do now that he’s an adult? Is he capable of working? Does he have a partner?
R: Tom is not dependent enough to have a job, or a relationship, but he refers to the day centre as ‘work’ because he wants to be like Dad! He even has a few ‘girlfriends’ there! Now that our parents are getting older, we’re looking at respite care, but I have my reservations.
ST: Why’s that?
R: Tom used to attend a day centre in Porth. One day he got bored and left. He just walked out. We weren’t contacted for an hour or two. The police were called and Dad went straight out searching for him. Tom was found on the duel carriageway, visibly shaken. He was trying to find his way home. It’s awful that the people we trusted to look after him didn’t. Tighter security has been put in place since then.
I feel we’ve been let down a lot by services.
ST: How do you feel about the services available to Tom and your family? Would you change anything if you could?
R: I feel we’ve been let down a lot. It’s only because my parents are learning disability and mental health nurses themselves that we’ve come so far. I think there should be training available in work environments and schools, especially for people who work with the public. The more people know about learning disabilities, the more they accept it.
At the moment, we don’t have the right balance between integration and care. One or two services have been good but when Tom left school, nothing was put in place for him. My parents had to take charge.
People ask me what it’s like, having a brother with learning difficulties. It’s all I’ve ever known. To me, it’s no different from the norm. Children bring joy no matter what, Tom was the smiliest baby I’ve ever seen – he was so happy!
It’s clear to me that Courtney could go on talking about her brother for hours – he is obviously very loved and supported. However, Down Syndrome is not the only learning disability we see in today’s society, with some disabilities more visual than others. Despite vast improvement in the treatment of individuals with various learning difficulties in recent years, ignorance and judgment are still rife. Courtney’s account of growing up with Tom was touching, filled with obvious affection, joy and gratitude. With perseverance, more people will feel this way in future.