The pressure’s on. Do I tell Joe now or wait till the last minute? Do I give Joe chance to get used to the idea, or will it just give him time to work himself up into a concrete wall of impenetrability? Normally I discuss everything with Joe because I have found, that in the main, it is better for him to be well prepared than to have things sprung on him. But there are some things I know he finds so stressful, that I am not sure what to do for the best.
I struggle with the rising feelings inside. If this was a single isolated case, there would be no issue, but this is a learned response from years of experience. Early on, the things I was hoping Joe could bring himself to cope with were not very important in the grand scheme of things – have his photo taken by the nursery/school photographer, take part in children’s parties instead of hiding behind a door, have a go at an activity he had not tried before. I would cajole, talk through, explain, joke, try everything to coax Joe into taking part – but these were all things that I wanted for him, not things that he wanted for himself. Although within me there was a rising feeling of frustration and disappointment, I would reason with myself that it didn’t really matter.
Coincidentally, I was reminded of one of these experiences today – I have just spent 45 minutes crushed into a train, an experience I have not repeated to that degree since returning up North from London on the day of the opening ceremony of the Olympics. Struggling to expand my ribs enough to breathe, I asked Peta if she remembered the day. We relived memories of walking through the gardens of the British Library on the way from St Pancras to Euston, bumping into one of the Olympic torches. Earlier that year, Joe, along with the rest of our family, had braved almost monsoon conditions to watch as an Olympic torch had been carried through our nearest town, Joe had been visited at school by Wenlock and we had all followed the preparations for the Olympics along with everyone else in the country. Joe was so excited to see the torch, but being offered the chance to hold it and have his photograph taken with it sent his anxiety off the scale – there was no way he was going near it. Peta (aged 5 at the time and barely bigger than the torch itself) had her photo taken with it. I shouldn’t have cared that Joe could not have the experience or the photograph for the future, but I did care. I found it so frustrating.
Again, I tried to make myself feel better – it was me wanting him to have these experiences, not Joe feeling he was missing out. I was feeling disappointed because I wanted him to be able to say he had held the Olympic torch, just like I wanted the school photo and I wanted Joe to enjoy the party. But gradually, as the years moved on, the stressful things I asked him to do became more serious – there was more at stake; I needed him to go into an optician’s appointment, clear airport security, take an ADHD test using a computer and a headset (that one has never been resolved after Joe set of the fire alarm and threw the very expensive equipment in the bin.) And as the stakes become higher, so does the anxiety in me. It’s hard to describe the feeling as you see everyone else’s children breezing through these experiences, parents whose whole soul doesn’t sink at the mention of what is perceived by most as normal, run of the mill events; it’s not that I want Joe to be different, but I would like his burden of anxiety to be lifted so his life was not fraught with stressful situations. As a parent of an autistic, PDA¹ child, the pressure caused by my child not being able to handle these everyday events is hard to manage. All my other children cope with getting on a bus, having a school photograph, getting their eyes tested and I barely give it a second thought. I want to tell Joe just to get on with it, just do the thing that is causing him stress and get it over and done with, but I can’t do that – it’s pointless. Even strategies that work for most autistic children do not work with Joe because of the rigidity of his PDA¹. It’s like firing mud pies at a concrete wall and hoping it will crumble. It’s constantly living life on the edge of a stress crater, teetering on the rim, shoring up the edge so we don’t go crashing into complete overload.
So here is the most recent problem, looming higher than the daily hurdles of keeping Joe on an even keel. For two years Joe has been due his booster injections for tetanus, diphtheria and polio, and his meningitis and septicaemia vaccine. Immunisation nurses have come to school, but he has just not been able to go through with it. Joe finds the idea of something foreign being injected into his muscle terrifying. He knows all the science, all the reasons why having these immunisations is both important and beneficial, but he is scared the injection will kill him. Somehow, I have to get him through this if at all possible. I have learned to distance myself from the situation and feign unconcern, I even take myself out of the equation where possible in case Joe picks up on my anxiety; but it’s still massively stressful. There’s three days to go to the injection appointment and I still don’t have a plan A, never mind a plan B. Plan non-existent then – we will go to the wood, walk, breath in the fresh air, try to find some calm… and take it from there.
¹ Pathological Demand Avoidance