Being a carer of a young lady with special needs, means we don’t look or act like everyone else in the shopping centre. I like to tell myself, that Abbey is so beautiful, that is why people stare or gawk. They are captured in her beauty.
I know that’s not true. I am still on my journey about being comfortable when going out in public. This may entail a trip to the park, taking the boys to school or a trip to the shopping centre. Its anywhere that is not home. However, even when people come to our home to visit, they still stare.
Its hard for me to be comfortable when entertaining or visiting anywhere with Abbey. She is incontinent, she has seizures and she is in a wheelchair. They are the most obvious issues we have to manage to the passer-by. Incontinent means it’s hard to find somewhere to make her more comfortable, given she is over a metre tall and a young lady. Seizures mean I am always on edge, watching and waiting. And a wheelchair, just is a big symbol that she is disabled. It’s how we think of disability in society.
How am I becoming more comfortable? I do the following:
- I make sure I am prepared for those things above. I have the supplies and an action plan.
- Abbey likes to talk and scream in closed in spaces, especially elevators. Now I talk quietly to her and laugh with her. I don’t apologise for something she is enjoying. She is only encroaching on a social standard that should not apply to her.
- Abbey likes to move about in her chair and reach her legs and hands to outside her space. This can result in touching people, accidently in most cases. I use to apologise, now I talk about what she is doing and include that person into her world with a remark like ‘oh you found his jacket’. She does not hurt them, but Abbey is very good at invading people’s personal space. She just wants a cuddle.
One item Abbey has that really pushes my comfort zone is the wheelchair lift on the back of our car, it’s quite a sight for the uninitiated. It goes up and down, folds up and requires me to disappear into the back of the car to unhook her from 4 locations. It’s very strange and physical. People watch this process, intently. I’m not use to being watched, intently and knowing I am being watched. So I now ensure I wear clothes that you can’t see up my skirt, shoes that don’t slip and get on with getting her out of the car and onto our next adventure. I also talk to Abbey as I put her in or out of the car about anything that comes to mind, where we are going or what is happening out side. It helps me feel a bit more normal as people in public carparks watch with such fascination.
I’m getting better with the staring, but it’s my issue, not Abbeys. She does not care or know. Her world is so blissful, so in these moments I try to join her in it. And its so loving, magical and darn silly. It’s a great journey.