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I count my blessings most days. I’m lucky that my kids are high-functioning. I’m thankful that they are learning some independent skills. I’m grateful that they are not (yet) paralysed by fear and anxiety. I appreciate that, so far, we’ve managed to handle what has been thrown at us and we have been able to continue moving forward.
I know that we could be far worse off.
But that doesn’t mean that life is easy. It doesn’t mean that we don’t struggle. It doesn’t mean that we don’t regularly have those days where everything seems all too hard.
It’s all about the little things. Those little elements that, on their own, mean little. But when put together can represent an avalanche of feelings, emotions and stress.
It’s all the little inconsequential things that crop up continually every day that make things so hard for us. When battles over those little things pile up on top of each other and multiply, that’s when the true weight of our autism experience is felt.
Daily battles like getting dressed in the morning. Putting shoes on. Going to the toilet. Doing homework. Eating healthy food. Sitting still. Not interrupting. Venturing on an outing. Driving in the car. Making a small change to routine. Accepting visitors in the home. Going on a picnic. Getting to school on time.
None of it sounds hard but when you face the same battles day in, day out, after a while it can all seem insurmountable. Endlessly trying to manage and cope with little, seemingly insignificant things, feeling that progress is never made, can be relentless and draining.
Here’s a recent example. During the holidays my husband and I wanted to do something nice with the kids so we decided to buy some takeaway and have a picnic in a local park. We thought it would be nice to spend some time with them out of the house, in the fresh air. Easy, huh?
Think again, it’s never quite that easy.
Gilbert complained the whole HOUR we were out (yes, we are talking a single hour here). He didn’t want to leave the house, not even the idea of hot chips and a swing made him embrace the outing. The complaining and the acting out and the bad temper did not let up for the entire outing.
Meanwhile, Matilda was over-excited and wouldn’t listen to anything we said to her. And Delilah acted like a typical 2 year old, getting into absolutely everything. Our dreams of an enjoyable outing with the kids quickly turned into a nightmare. Soon we were grumpy with them and with each other. It wasn’t much fun.
None of it was major but having to deal with a lot of little things eventually took it’s toll. The chip sandwiches didn’t taste the same because we didn’t bring along margarine. The ground was scratchy on the edge of the blanket. The wind kept blowing the takeaway wrapping around. You get the picture.
At times like these I try to remember that they are all still little things. I try to remind myself that there are good reasons for what we are going through. And I do accept that we could be dealing with far worse.  You know, counting my blessings and all. And it is true, we ARE lucky.
But the fact remains that some days it doesn’t matter how little the problems seem to be, when the little things keep piling up on top of you (yet again) it can be hard to see past them to recognise the real blessings beneath.