Hero to zero in nano...seconds

Hero to zero in nano...seconds

Inconsistency is something I often moan about when it comes to raising an autistic child & striving to help them make progress. It’s not quite the same developmental journey we are used to where one builds on stages of progress one step at a time. There are regressions, setbacks, hurdles, shifts & new sensory issues that come & go all the time.

Closely related to this & the thing that can make a parent of an autistic child stress beyond regular levels is going out and about in public for an occasion/activity/errand/trip. The intense planning; hyper vigilance; praying everything goes well; making sure we use the right words; fear of things breaking down at any given moment & getting it wrong, can be so wearying & debilitating to the point of deciding to just not go out.

No matter how much planning & preparation is done it is never a given that any trip out anywhere is going to go smoothly & that is no discredit to our incredible, brave autistic children whose brains are simply wired differently & who most often are not able to cope with the unexpected. Worst of all for me is when I know I have got it wrong that is usually at the point of no return too. It breaks my heart not only to see & experience the distress but to know I let my child down by not being able to get it right, forgetting how his brain works, in time.

Sure, all parents make mistakes & don’t get it right at times but, that can be rationalised/distracted from/negotiated/explained/bribed/apologised for resulting in recovery in minutes. The recovery with an autistic child can take hours & be both physically & emotionally draining & exhausting for them. My own son Henry can become dis-regulated to the point where he no longer knows where he & his body are in space & time, it must be petrifying for him.

Example: We head out with my parents and daughter to a pizza restaurant I know Henry likes. We go early because I know it will get busy & the acoustics in there are also shocking. Timing is key, in order to cope with extra people in the car plus a restaurant visit I had better make sure that Henry's tummy stays above half empty. All goes amazingly well, Henry is so good, so patient waiting for his pizza, copes with the noise, we get a quiet table, he eats the whole thing. We hop in the car to leave, take a few turns & he starts to show signs of distress that escalates in nano seconds to him becoming completely dis-regulated resulting in some awful behaviours to the point where I have to stop the car. We try so hard to recover, fix the mistake I now realise I made ie the last few times we have driven to this town it has been for the dentist for his sister and we have done the same thing each time. He heard me mention dentist at lunch, recognised the town & was expecting a trip to the dentist & a walk around the park, like last time. I turned around, we tried to give him that but, it was too late.

The best I could hope for was to get him home asap, total damage limitation inside the car (very brave parents of mine) and 2+ hours to recover after we got home. Henry does not like being this way, it upsets him deeply to see me frustrated/angry/upset & he needs me to be calm, ok & to invest in making him feel better, not easy to do when you’re so cross, frustrated, guilty and embarrassed by his & your own behaviours earlier.

This is just an example of what parents of autistic children find “so hard” about parenting & going out & about (away from predictability & routine) in particular. It’s not the child, not ever, it’s the never being able to fully trust that things will go smoothly & so badly wanting to avoid a negative experience for our autistic children.

You will never truly know it unless you live it & I hope this awakens a sense of proper understanding & actual empathy rather than the usual normalising of what us sen parents go through sometimes. And to autism parents, you do not have to be perfect, it's not possible, life will always get in the way, our autistic children live in our world & we must not shy away from exposing them to the things they enjoy, love, deserve to be doing, even if it means a few disasters along the way. They will recover & we will learn to help them recover better each time. I do also personally know that I have to have my A game on & be emotionally up-for-it otherwise, we do indeed simply stay at home, and that's fine too. You just somehow know too, that if we could all live in the autistic persons ideal world, it would be bloody perfect wouldn't it! 

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