Just recently I was talking to someone about Niece. Well, I say talking, but in reality I was ranting about something she had done. And I was told in no uncertain terms that they had no sympathy for me, I was ungrateful, and should feel blessed by any little thing that she does. The tirade concluded with comparing her behaviour to another mutually known child of the same age, quick to point out that Niece accomplishes so much more. And some words were exchanged.
And coming from out of the blue like that, it hurt. It hurt a lot.
But it's okay, I can understand their frustration and anger at their own situation and I can forgive them for that. But that didn't stop the fact that the words hurt.
But you see, being a carer is tough and while I may look like I live the life I don't. Not really. True, while she is at school I'm free to do as I please. And that means housework, study, going out to the shops, watching television, whatever I want and with far less restriction than a 9 to 5 job. But the whole point of being a carer is that while she is home she requires some sort of care. And here, that's constant supervision.
So it's a bit like that old adage of comparing apples and oranges really. One might CHOOSE to not think for herself, Niece simply CAN'T. Child A can be left alone to fend for herself. Child A can go out for a walk to the shops, grab a taxi/bus/train, go visit a friend. She can, if she chooses, cook herself a meal or do a task and you could expect that task would be done properly. And by properly I don't mean to a high standard, I mean completed and you wouldn't expect to have to go back to make sure you don't have to redo it from scratch.
Niece CAN'T do those simple everyday things. She can't cook herself a meal. She can make a sandwich of sorts, she can boil the jug and make a cup of noodles. She can use the toaster. But she can't use the microwave. Or the oven. Or the stove. She thinks she can microwave because hey pressing buttons, any buttons, will get her the result she wants. Because that's what she's seen us do. And she gets angry and frustrated when I pull her up and make her treat it with respect because she needs to remember that it's an oven. Porridge this morning took 20 minutes for a less than five minute task.
I can't send her into the supermarket to pick up bread or buy milk. She can't remember which milk we buy, she can't tell the difference between the use by dates, she has to be prompted to think about which is bigger, 2 litres or 3 litres. And she can't do money. She has to be prompted to look at how much, round up, collect the change. She doesn't know how to use coin because she can't count it. *i've a sneaking suspicion she can do more than she lets on because when it becomes clear after a time that i will not count it for her, she suddenly arrives at the answer*
She can't grab a transport card and jump on a bus. She can't call a taxi and go out. However, she can call an ambulance in an emergency so I think that, at least, is a blessing.
If it's part of her normal routine she can remember do it without prompting. Like wipe up in the morning and empty the dishwasher. But I still have to check to make sure the dishwasher is actually empty. Once she dried and put away all the dishes in the top shelf. But not the bottom because she could see they were dirty. It never occurred to her the dishes in the top shelf would be dirty too. She has to talk herself through whether or not the dishwasher is actually going before she opens it. Is that light flashing or not? Because if she doesn't, she's likely to open it while it's still running. She only needed to be told a couple of times to remember that Saturday is the day she changes her sheets. But every day I still need to remind her to use a hair brush and not her hands to pull her hair back into a pony tail.
She wears incontinence pads, and if I don't remember to check every day, she's just as likely not to wear one. Or even if she's not, she'll tell me she is. And it's just as likely I won't find out she's had an accident until I do the next laundry load and wonder why it smells.
She doesn't help with dinner preparation any more and hasn't for a while. Because I got tired of telling her she needs to wash the potatoes after they're peeled and before they're cut. And emptying the dirty water out of the saucepan, washing them best as I could, and redoing the water/salt. Every night. Without fail.
And every task is the same. Every day. Here at home, at school, and at work.
So yes, when I look at what some of the other carers have to do I do consider myself very lucky. But that doesn't mean the constant repetitiveness doesn't become frustrating occasionally. Especially when combined with all the preteen behaviour which - and I know this is part of the condition - is not at all charming in an 18 year old girl.
She appears to be high functioning but the more time you spend with her the more you realise she really is not. Most definitely not. Every day little things you could expect from someone high functioning on the spectrum are so far beyond her capability. Every. Day.
I've already been told she'll never be high functioning enough to hold a paid job with any of the providers. Not even one of the repetitive ones as she makes too many mistakes and can't be left alone to complete her task. When she does complete her task, she stands there without thinking to ask what she should do next.
So friend, forgiven for getting tired of my venting. I will try to remember that you have it tough too and not complain about mine so much. xxx