My sister is 3 years older than me and has William’s syndrome. When I was 14 – 17 years-old, these were some things we would do together.
When I was too young to take her out, we spent a lot of time doing activities at home. I always tried to do something that we both enjoyed too!
- A card game that was simple, like clocks or snap, using a traditional deck.
- Uno was also great as it was simple for her to follow, using just colours and numbers.
- Story Cubes – this involved rolling two dice with pictures on and making stories up using the prompts. Great fun and easy to do, particularly good for imaginative people!
- Baking was something I loved doing myself and was simple enough for my sister to join in with. I would do the trickier parts, or sometimes she would just help me decorate.
- Dancing! Something that she absolutely loved to do, and I found it fun as well. We would make up dance routines/ performances. It was a fun way to move around and stretch or release energy.
- Colouring was a more relaxed activity. If I was feeling tired or low on energy but still wanted to spend time with my sister we would colour and listen to music or chat.
- ‘Spa day’ – we would do things like manicures, foot massages, face masks, hairdos (I would mainly be doing them to her). I would make the room look and feel like a spa by using candles, relaxing music, incense and wearing dressing gowns and slippers.
- Sleepovers – we would move her mattress into my room and do activities together, which always included a film and a ‘midnight feast’ in bed. We would chat and gossip which she loved too.
- Treasure hunts – I would write clues and hide them around the house, making a treasure hunt. I made sure the clues were easy enough for her to read, but I would always be there to help her too. I hid treasure at the end, like fun snacks or some coins!
- Reading, where I would read to her. I could always choose a book that interested me too so we could relax together.
The activities that we did most frequently were ones I also enjoyed, as it just made it more fun for both of us! If I was doing something that I knew my sister would be able to join in with, I would always involve her, too.
However, if it was something that wasn’t really my hobby, we would plan and arrange a certain day and time for it. It would feel more like I was looking after her as I had to facilitate some things (like in the treasure hunt or spa day). I would say that because we were both girls and had similar interests it was easier to get along during these activities.
When I was old enough to take her out we would do things like bowling, crazy golf, shopping, go for lunch out, a walk in the park, or going to a theme park, cinema, aquariums, museums or shows.
Looking back, it was very easy to take on too much responsibility for my sister, as I saw myself as more responsible than her. However, that didn’t take away from the fact that I wasn’t even an adult myself. I remember being aware that I looked really young whilst caring for my sister, but feeling in charge and like the adult.
When we were at home I don’t remember feeling responsible for her, as there were less dangers and we were just playing games and doing things I enjoyed too. It was easier to get along as sisters rather than the carer-sibling dynamic at home.
Parents could help their teen sibling by working together to create a list of their hobbies, and then devising different ways to involve their disabled brother/sister. That way, the sibling leads it and prioritises what they like to do too, ensuring that they are having fun as well.
Also, taking the pressure off really helps. It can feel like a big responsibility to entertain someone with needs, especially as a young person. So not underestimating activities like watching tv, or being in the same room together while doing separate activities is key. I still think these ways are a great way to bond, as you can discuss favourite tv characters or just relax in each other’s presence.
Furthermore, even when I used to help care for my sister, mundane things like helping her with her showers, choosing clothes for the day, or packing her bag for school or a trip were different ways that allowed me to spend nice time with her. It wasn’t always positive of course, but we were largely able to chat or listen to music whilst doing it. Even making a cup of tea for her would often result in her helping me, and having a little moment together too. Highlighting these little moments to the sibling can make them feel more positive about their relationship, as they may be doing more than they think – as I said before, quality time doesn’t always have to be a pre-planned activity.
My sister also really liked routine and would very easily grasp onto doing the same thing every night with me. My parents helped by explaining to her that I wasn’t available every night, and not to expect routine. They would distract her and often spent time with her instead, which really helped to relieve the pressure too.
Another way that my parents supported me was in a situation where my friends were at the house. My sister wanted to join in with my group which meant I had to facilitate her and couldn’t relax with my friends. My parents were aware of this and made it fair, so that my sister could spend some time with us and feel involved, and I also could have some time just with my friends.