Who’s said that in response to a question of “how are you?” Pretty much all of us I imagine at some point.
Now, who’s said that when they are patently anything but fine? Still pretty much all of us?
Yeah, I thought as much. It seems to be that the worse the situation the more likely we are to brush on a stiff smile and utter the above words while inwardly dying a little bit. Sometimes it’s literally all we can say without the threat of tears. And then we make an excuse to rush off (busy busy, must dash) and on we go, keeping the real response inside.
It can be anything that makes us feel this way. Work, lack of sleep, worry over exams, worry over the future (in general) or worry about specifics. Sometimes I can’t even tell myself why I am anything but “fine” and I am an allegedly intelligent 40-something woman who outwardly appears to be in control of my life.
So, how much worse must it be for some of our children on the autistic spectrum? I am thinking today of my 6 year old daughter – she has severe sensory issues – and how she struggles so often with everyday events that other people take in their stride. On her worst days just getting out of bed will put her “wrong” and she can be crying that her pyjamas hurt before she even down the stairs. Then her weetabix, which is made the same way as the day before, is too hot, or too lumpy, or the spoon (and she always has the same one) is bending her hand.
And so it goes on. But actually, I welcome the days when she can tell me what is wrong as it helps me to be extra patient with her, and take more time. If she has a morning like this, I will spoon feed her (sometimes literally) through her morning routine, undressing, washing and re-dressing her, and finding her school bag, zipping up her coat and strapping her into her car seat. I do everything I can to lessen her load if I know.
Sometimes though, she can just be “grumpy” for no obvious reason. She isn’t particularly whiny or clingy but she is (it seems) full of anger and pent-up aggression. These are the days I hate, when I know something is wrong but I cannot work it out. If I ask her if anything is wrong I get the barked answer, “No, I’m fine” and then I do really worry. I can see it’s not fine, but however I try to rephrase my question I meet a brick wall.
She is an academically bright child, who can speak well, BUT, and it is a big but, she has desperate problems with verbalising anything that is important to her. It can be her version of important, like yesterday when she spent half an hour before we finally worked out she was referring to Yorkshire puddings, to a much more essential problem like what is precisely wrong at school that has turned you into a screaming nightmare every morning for the last 10 days? I was confident (wrongly it would appear now) that it couldn’t be anything that had happened at school because once I got her there she appeared to be perfectly OK, and she was not in this state after school, which is when the bottled up emotions used to pour out, in a stream of violence and anger and frustration. I even went as far as calling the school to ask if they’d had any new equipment delivered (no) or had someone moved all the desks (another no) and I was getting desperate for an answer.
I turned to an autism parents group that I am a member of and asked for brainstorming. A chance remark hit the target. We have two new children at the school. Now let me explain, it is a very small school – fewer than 30 children – so any newcomer is obvious from the start. These two children are brother and sister and have joined the infant class. They came for several visits over the course of two or three weeks, and they are quite delightful, quiet, well behaved and basically I defy anyone not to like them. Each visit, M had a note on her visual timetable to show her when they’d be coming. All was well.
I realised that the school had totally overlooked to put their permanent arrival on her timetable. Ten days ago they turned up at 9 am and are now in situ all day every day. M has been playing with the girl at break times in a small group (I can’t believe I can write that last sentence, it seems so magical) and is happy to call her a friend, but she has not been able to process the transfer of these children from occasional visitors to permanent additions.
I spoke to her about it when I realised, and took care with wording my questions. However I asked her she denied that she had any issue about it at all.
Interesting then, that since our talk, and my explanation of how sometimes new people join a group, and that’s OK if you like them, and also OK if you don’t, and that it takes time for it to feel like it did before, and indeed sometimes it will never feel like it did, but it might even be better, that she has not had one screaming fit or tantrum.
In fact, this was her yesterday after a regular day at school and a fantastic evening outside with the Beavers. She was tired after a hectic day but still coped well with some social interaction “after hours” I am so proud of her.