“Why doesn’t she do that for me? Are you sure? She really seemed fine. I’ve never seen her behave like that, maybe you’re reading more into it than there is. You’re just sensitive. She only does it around you, coincidence?”
These are all reasonable questions. Actually, not they’re not, they’re kinda rude. But they’re questions and statements that I’d like to cash in that fabled dollar for every time they’re asked.
There might not be enough to retire on, but there would certainly be enough for a new designer handbag, a few pairs of shoes and a night on the town. And really, what more could a girl want?
Why does she behave for you and not for me? Believe it or not, it’s actually you that’s the problem. Yep, your read that right. It’s you. Not me. So there. *sticks tongue out and sings childish song*
You see, we’ve learned that she’s a bit like a cup, one of those opaque ones. There’s only so much capacity, but while you stay below the rim, the contents don’t spill over. You never know how close you are to splashing the contents all over the floor, making a huge mess, often until it’s too late.
Each day she goes out into the world, and little by little, the cup fills up. She knows there is an expectation for her to behave in a certain way, so instead of acting in the way that makes her feel most comfortable, she tucks it away into the cup. Hiding her feelings away, each new thing splashing into the depths, as it comes ever closer to the top.
Eventually, as cups are prone to do when you keep putting things in them, it spills.
If we’re lucky it happens at home. We don’t worry about the mess, we’re used to mopping it up. It’s safe here, she knows we’ll love her anyway, no matter how often it happens.
We’ll spend some time; sometimes hours, sometimes days, sometimes weeks, cleaning it up, calming her and then it starts again. Drop by drop until we repeat the process.
As she’s gotten older, the cup is slightly bigger and different things add to it in different ways. She’s learning to recognise the signs that the cup is getting closer to the top, and learning ways to help siphon some of it out, releasing the pressure before the inevitable happens.
But it’s hard. Every day is hard. And it’s easy to forget, looking at her interacting with the other kids, running around the yard, eating at your table, that she’s different to the others. That she’s doing her best to just be normal. How utterly exhausting.
So please, before you throw those questions around, take a moment and remember that’s she’s holding it all in. She’s trying with her everything to fit in with those around her, as the contents of the cup gets ever closer to the rim.
And if she seems fine to you, you know what, that’s freaking awesome. Maybe compliment her on that instead.
Absolutely brilliantly put!
And so freaking true.
Thanks Karen – I’m sure you’ve heard this a bajillion times too!
Renee Bugg recently posted..Her cup runs over
I certainly have – and with my older one before he was diagnosed and then the pressure of school got to him. School were pretty quick to ring me when he exploded during the time they had him.
But like you say, we mop up the spills and reassure and get on with it 🙂
I think the diagnosis should come with a packet of Chux xx
Renee Bugg recently posted..Her cup runs over
Some people really are idiots aren’t they!? And sometimes, those comments come from people who really should know better! Grrrr!
Yeah they are – but sometimes I honestly think they just don’t know any better… x
Renee Bugg recently posted..Her cup runs over
Thank you immensely for describing the best way of daily life with an high functioning child – when I read this being mother of two high functioning kiddies I thought at last someone has expressed exactly how it is and with analogy that others can maybe understand more rather than judging or assuming….
I’m really pleased that this resonated for you Debbie. It can be so hard… Big hugs to you and thanks for taking the time to comment x
Renee Bugg recently posted..Her cup runs over
I’m looking forward to my daughters cup to get bigger. At the moment its around the size of a childs toy teacup. It doesn’t take long to fill at all.
She had a particulary bad day at kinder this week, my mum was called to pick her up as she wasn’t able to calm down and was breaking things. The lady at the office said she probably acted that way for attention so she could get picked up. I didn’t know if I wanted to slap her or just walk away. I think the fact that she was still melting down when mum got there, and for 15 mins after, would be enough to show her that it wasn’t bad naughter behaviour. Know it alls need to keep their opinions to themselves.
Oh sweets – it will get bigger, I promise. And then it will get smaller again, and then bigger again – one step forward, one backwards. Not very inspiring, I know!
I really hope you have a better finish to your week than the start. And yes, more people learn to keep their noses out of things they don’t understand x
Renee Bugg recently posted..Her cup runs over
You know how much I get this xx
I do Suz, I do. xx
Renee Bugg recently posted..Her cup runs over
This analogy really helped me to understand more of what you (and poss) experience. You’re doing a mighty fine job my friend xx
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Our conversation inspired this post – but I know it always comes from the best place with you my love. xx
Renee Bugg recently posted..Her cup runs over
This post is perfect Renee, the absolute perfect description of exactly what life is like for our little people on the spectrum. Am off to share it everywhere. Thank you. xx
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Thanks so much Jane – both for your kind words and support. Big love to you and your special princess xx
Renee Bugg recently posted..Her cup runs over
This is exactly how it feels to me. You have described it perfectly.
I think what I have learned in the years since my diagnosis about how to manage the cup is – it is all about timing for me. When I worked 5x 8 hour days, that was simply too much for my cup. I can do a 9 day fortnight in the right circumstances but those right circumstances are few and far between.
However, if I have a bad interaction on day 1, that is going to limit my cup capacity until my next day off. And usually a bad interaction leads to further bad interactions, plus, even in my downtime I will be turning that bad interaction over and over in my mind, trying to figure out where I went wrong.
So I think a useful point is – anything that can distract me from turning that interaction over in my mind is like gold, and for me that has always been computer games. My cup will empty in half the time if I can spend it playing a game that I love.
But come bedtime, there it is again.. what I usually do is read until I am too tired to keep reading. Even if it is a book I know back to front (and could totally write out from memory!) it takes my mind off That Thing, which is again, like gold.
It is completely exhausting to try to be “normal” for 40 hours a week. It is even worse when someone tells you “it is ok to be who you really are, truly, trust me and be yourself” because the actual truth is, it is not ok to be who I am in a workplace. It is not ok to say what I really think. And while I think I have become good at pretending, they can *always* tell that I am holding back, because my poker face pretty much sucks.
So then I do the thing they have asked me to do – be myself – and all of a sudden, my personality is a “problem”. Why anyone thinks that is ok to say to someone.. I do not know. But that has happened to me more than once, sadly. I even got asked to lengthen my probation and the fact that my personality was a problem was put in writing for me to sign!
Having said all that.. my number one piece of advice to the parents of people on the spectrum would be to seriously consider what your child might want to do when they are old enough to work, and find a way within that wanted field that they can be their *own* boss instead of having to deal with people in the workplace.. 🙂