Who cares?

Photo of Quinns sitting in his Squiggles pack watching tv beside his Big Sister who is sitting on a bean bag. They are facing away from the camera and both are wearing hoodies.

Who cares? We all care; I do, Dad does and Big Sister does. As parents and sibling of Quinns that is our role in Quinns life. That’s the same as any family except that it’s rarely thought of in that way. Quinns’ needs bring our caring positions to a whole other level. 

My caring role is fairly obvious. As he gets older it becomes more and more distinct from what I would do for my child anyway. At four years old you’d expect him to get himself dressed and feed himself (perhaps with a certain amount of persuasion, cajoling and frustration but dressed and fed all the same.) I have to do all that for Quinns just as I have done since the day he was born. Only now he’s a busy four year and we have a full family life. 

On top of that there’s appointments, equipment, meetings, paperwork etc plus the communication difficulties which often leave me completely in the dark about what Quinns’ needs. There’s little doubt that all this takes up a significant amount of my time.

But what about Big Sister? It’s harder to quantify her young carer role. She loves her brother like any Big Sister. She loves to read to him and play with him. She has household chores to do like any other eight year old. She’s also quick to point out the unjustness of having to do those chores when Quinns does not. ‘It’s not fair!’.

I depend on her a little more than perhaps I should. Together, when Dad’s travelling, we get the three of us out to school in the morning. As well as being the time keeper to make sure we’re not late she cleans Quinns’ teeth, brushes his hair and fastens the Bundlebean (cosy toes) to the Bug. She’s an extra pair of hands that I couldn’t do without. 

She has the patience of a saint. Quinns eats orally. Meal times are long and she has to wait till Quinns is finished before we can move on to the next activity. Transferring Quinns from one piece of equipment to another, making sure every single strap is fastened so he’s secure, takes time. It all takes time.

Our world revolves around Quinns. We had to move house to suit his needs and now we need house adaptations for Quinns. Days out and holidays are all about where we can go that will fit Quinns’ needs. Parties, even her own, are dictated by his needs. Not hers.

The appointments and people are all for him. She’s been around for all sorts of appointments with physios, OTs and equipment set ups. You can ask her to help with any chair, tray etc and she will know. As we start to welcome professional carers into the house she is a great source of help and support for them.

She understands Quinns. She makes the cheeky requests on his behalf ‘Quinns wants to watch TV’ or ‘Quinns wants a snack’. She keeps it real and us in check to make sure it’s all fair. As well as picking up his non verbal signals she instinctively knows how to model language on the eye gaze computer. She’s even helped train the staff at school and shown them how the eye gaze works.

She sings him to sleep when I just can’t do it anymore. She sits with him when he is poorly. She fetches the thermometer, draws up medicines and prepares his thickened water. She accepts that she must entertain herself while we look after him. 

All she wants to do is spend time with him and do the things that any other siblings do without a fuss and without a fight. She sees my tears and rage when it feels like the world excludes her brother. She now points out the lack of accessibility and is willing to challenge anyone who parks in a disabled parking space without a blue badge.

Her drawings, voice and images helped shape our fundraising campaign for accessible play equipment. Her passion and enthusiasm for raising awareness for accessible play equipment and Changing Place toilets (despite her eye rolling at yet another photo of a toilet) are difficult to ignore.

She loves her brother and is so proud to be his sister. She takes her caring role so much in her stride that it’s easy to forget that she has a heavier burden to bear than some. I couldn’t do it without her. She is a young carer. In fact she’s a super sibling!