The regular kind of pain

So Leo is now a pre-schooler. It has gone rather well (aside from a mini-saga of is he/isn’t he entitled to funding for one to one support, see below). I keep reminding myself (and everone else) that I predicted a good start, with not so good things later on. I so often feel like I am the voice of gloom, but I have learnt the hard way the difference between a mindful approach that is observant and respectful, and mindless optimism that can march along cheerfully, sometimes trampling the child on the way. Like most children, Leo loves a room full of new toys and activities, and that can override any distress he feels about the overall situation. However, once the toys are no longer new to him he will become agitated, probably within half an hour. Faced with the same set up again, the signs of distress will start within 10 minutes. A few more attempts and he is screaming as soon as he realises where we are going. I am looking forward to being proved wrong on this one, but if it does hit, I want everyone to be problem-solving rather than surprised.

The first day of pre-school was also the start of the ‘funding for one to one support’ saga. I have to say I maintained a zen-like calm in the face of all this. A lot of effort and professional time had gone into arranging this support: observations made, forms completed, a special report written up. I was mightily confused as to why any of this had been done when, according to pre-school,  Leo was simply too young to qualify for extra support. However, the pre-school would try to provide the support themselves despite the lack of funds. Leo seemed to understand immediately that this nice lady was his special person, and was non-verbally bossing her around within minutes.

I sat on a tiny chair in the middle of the nursery while I filled in yet more forms. Occasionally a child would sidle up and try to get my attention. We have been away from toddler groups for a while and I had forgotten what children are like, how strongly they seek interaction. A little glance from under a hat, a toy presented on the table, a sideways look to see if I have noticed. One boy took the seat next to me and proceeded to seranade me with jaunty toy piano music. It is the ease of interaction that surprises me when I meet ‘typically developing’ kids. Leo does interact, but it has a different quality. His effort is so intense it is palpable, and he almost seems surprised, as if he is trying something very new and strange. I noted the difference between these kids and my son, and not so long ago it would have upset me, but that day I didn’t feel upset at all. They are themselves and Leo is himself. The feeling that we have wandered into this world by accident has all but gone. This world of autism, special needs, diagnoses, statements, therapies, theories. It is what they call acceptance I suppose, although it is not acceptance of a particular destiny, but simply of the way things are now. And of the many many possibilites that still exist for both of us.

There is also relief at dropping out of the race of childhood. No more comparing friendly notes with parents whose children are on a different developmental timeline to mine.  They are all different anyway, yes, but I was having to explain too much, too often. Sometimes I said autism, but sometimes I just said he’s a bit behind. Quite a lot behind actually. Repeating that refrain was becoming increasingly painful and was not doing either of us any favours. Yes, it is isolating to take yourself out of the mummy and baby social scene, but we were not keeping up anyway.

I have been in the regular kind of pain the last few weeks. A mistimed drop onto the sofa and I was in the realm of back pain. I expected it to be gone by the next day but it wasn’t. Or the next day, or the next. I fought the pain, complained, cried, lay on the floor, stamped my feet. And at the end of all that the pain was still there, carrying on exactly as it had been. In the end I had to accept it. Acceptance hasn’t helped either, but I couldn’t keep up that kind of resistance. It became like white noise, an unpleasant soundtrack to my life. The osteopath laughed when I said I had a low pain threshold. Apparently everyone always says they have a high pain threshold. So, yes, well done me. She didn’t disagree though.

I was so preoccupied by my new job of being in pain that I forgot the Specialist Nursery Nurse was coming round at 9am. She found us all in pyjamas, tv on, Leo engrossed in mindless kindle apps, toast in hand, with a side order of dry cheerios. Crumbs on the floor, toys everywhere. I dread to think what else she saw. Initially resistant, Leo eventually perched on the side of the table and took part in the activities with his own brand of detached enthusiasm. He would not accept that the coloured pegs should go in straight lines. I do hope she appreciated the irony of trying to create straight lines of one colour while the autistic kid insisted on a random configuration.

The other bonus was that she sorted out the pre-school funding confusion. The pre-school had applied to the wrong department: the 3 year old section rather than the 2 year old section. You would think that would have been reasonably obvious. I’m glad I didn’t waste time getting upset about it anyway.

Anyway, aside from more chaos and more screen time, the pain has had other side effects. I have slowed down. I can’t ‘do activities’ with Leo, I can’t do activities of any sort really. I spend a lot of time just sitting on the sofa surrounded by heat packs, and not tidying up. I am even speaking less. Maybe this has made me more approachable, or maybe it has just provided a pause in the action. Whatever it is, there has been a shift in Leo. He has been looking at me in a particularly clear-eyed way. He is less intense, not so quick to become agitated. He carries so much tension in his little body and that has eased. His movements are smoother. He has even attempted a word: cockadoodledoo! (since everyone has started saying it he has of course stopped). Maybe the main difference is that I can’t go to him, so he is coming to me, and when he finds me my attention is his.

(I should probably say that this week, although the pain has improved slightly, I have been considerably less zen-like, slightly more average. Below average if I’m honest). Okay, I’ve learnt my lesson, can I get better now – pleeeeeeeease!


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