From the age of 4 to 16, I lived next door to a family who had a son with Down’s Syndrome. I would say the overall feeling I remember when coming into contact with him (his name was Wayne), was: fear. To me, he was a giant man-baby, who had large, rough, dry, twisted hands that he would want you to touch. I did not want to spend time with Wayne. His mother, Betty, was (still is) a friendly lady with a cheerful voice and she was devoted to her family. She had two sons, (the younger was married with children), but Wayne remained at home, as intellectually he was possibly at the stage of a 2 or 3 year old and he was still in nappies (he was in his 20s/30s).
Sometimes my mum would send me next door to pay Betty some ‘catalogue money’ (she ordered things for us through her catalogues, god this was the 80s/90s, but sounds like the dark ages!). I distinctly remember that Wayne was more often than not, sat with large headphones on, listening to “his music”. As I grew older, I felt sadness for Betty. Her husband died at some point during our time there and so she was alone caring for Wayne.
My mum is a one for repeating stories, so I’ve heard 100s of times how when Wayne was born, the doctors left him on the side and told Betty he was like jelly, that he wasn’t worth her bothering with… she should call an institution to take him away… and how she held him and told them they were wrong, he was her baby and she was keeping him. She loved him instantly and unconditionally. I always thought it was amazing that she dealt with this ‘burden’ so well. I recall she had someone come for respite care – so she could go to bingo or just have time to herself and it just seemed like such a rough deal. Rough that as an old woman (old to me), she still had a ‘child’ to look after.
I also heard stories of how she had taken him out of a bad nursery because they had just dumped him in a corner and not worked on his development at all. Of how she had been advised to have a second child quickly so that Wayne would have a sibling to learn from. And how he had exceeded expectations on many fronts – because doctors had said he would never walk and also that he would die at a very young age. Wayne actually died a few years ago and he was in his 50s. I suppose it wasn’t that long after that Audrey was born. Betty was keen to meet her and I was really keen for her to, too. It’s funny how you become part of this club. Someone new joins the club and you’re so excited to welcome them, but you know from their perspective it’s not a club they wanted to join… But it won’t be long before they’ll be the ones excited to welcome a new member.
When Betty did meet Audrey, she kept saying how she was ‘high functioning’ and definitely more advanced than Wayne at that age etc. It was very sweet of her and of course I’m pleased to hear it, but I realise how it doesn’t matter. Of course I don’t want Audrey to be in nappies in her 50s and I want her to be able to hold a grown up conversation – in fact I have very high expectations for her… but…. I also know that no matter what, we will love her and be happy having her around. She is amazing and a joy to us. Just as Wayne was to Betty. I know she was happy to have had him. Her life was not the burdened one I imagined from the outside.
So the next time you see a mother or father dealing with their child with special needs, don’t feel sorry for them. Don’t think they are burdened. Just remember, there is love there and love is a very powerful thing. Huey Lewis knew it. I know it. Now you do too.