James has routines, lots of routines, routines for many of the key moments of the day; there is the ‘getting up’ routine, the ‘breakfast’ routine, routines for ‘going to the toilet’, ‘having our lunch’, ‘having dinner’ and ‘going to bed’. The bedtime routine is quite complex as it involves physical items, songs, and prayers, there are lots of things to remember.
This reliance on routines is not unusual for children, young people, or young adults (like James) who journey with a range of additional needs and differences. James is Autistic, has Learning Difficulties, Epilepsy, and Anxiety; and those are just the ones he has a formal diagnosis for. There’s plenty more going on for James beside those, but many of these play a part in James needing routines to help him navigate a safe way through the day.
Sometimes, however, the routine doesn’t quite go to plan. Sometimes, like a couple of days ago, when the routine falls apart, things become very hard for James indeed… Here’s the story of what happened… you will see as you read it why I’ve called this ‘The Domino Effect’…
To go to bed, James needs an eclectic mix of items to head upstairs with as we help him get into bed and settle. An old book, some empty DVD cases, balls of PlayDoh, a sensory tough chew bar (or more if he has more than one at the time), a couple of old wooden ‘Noah’s Ark’ dominoes, and a tin with biscuits in (we don’t leave the tin with him, but James sometimes chooses one of the biscuits).
As there is quite a lot to carry, we sometimes use the tin to carry the PlayDoh, chew bar(s), and dominoes, along with the biscuits. This is what I did the other night. Usually, I decant all of the items out of the tin when we arrive at James’ bedroom, prior to us heading to the bathroom first (another part of the routine!)… usually I remember everything and check the tin… usually…
Having settled James into bed I left him happy and settling down to squeeze all the balls of PlayDoh together. Everything seemed fine. I returned the biscuit tin to the kitchen and made myself a bedtime milk drink, feeling the day had ended well. I had no idea…
About 30 minutes later, I went up to check on James, and when I went in he was looking worried… I started to look worried too… what was up? James has very limited verbal communication, but he communicates through gestures, facial expressions, sounds, etc. He was communicating that he had lost something under his bed. I looked, there was nothing there. James insisted that I look again; I did, there still wasn’t anything there. James started to get agitated, why wasn’t I finding what he had lost? Well, because right then I didn’t realise what was missing… I checked around and saw his book, the DVD cases, the PlayDoh, the tough sensory chews… everything was there right? Wrong, I had overlooked that the dominoes were missing, and so was still trying to convince James that everything was OK.
I even got a torch and shone it under his bed to show him nothing was there… James looked but still kept gesturing under the bed for me to find the missing items. He got more and more agitated and wouldn’t settle, even if I left him to calm for a few moments. He then decided to continue the search downstairs and got me to look around in his den. I was still under the misapprehension that nothing was missing and that James was imagining it… I was wrong, James was right, but I didn’t realise it!
James eventually exhausted himself and collapsed onto a chaise longue that he has in his den. Too upset to do anything, too upset to go back upstairs to bed. I got some blankets and settled him where he was, but it took until 1:30am for him to eventually fall asleep (and for me to then get to sleep too)… An evening that had seemed to be going well had crashed!
After such a hard night, the next day actually went better than I had expected. James, unsurprisingly, slept in, but had a fairly calm day. He seemed to have either accepted that nothing was missing or had given up asking me to look. I brought his collection of items downstairs, still not spotting what was missing, and the day continued relatively uneventfully.
I had trepidation as bedtime neared, what would happen this time? I stated gathering the items for us to take with us, lastly fetching the biscuit tin from the kitchen. As I opened it, resting against some shortbread, were the two wooden dominoes, the items James had known were missing but that I had totally overlooked.
When I gave James the wooden dominoes it was wonderful to see the sheer delight on his face, he beamed with joy, finally they were found. I realised in that moment what had happened and how my oversight had caused James such unnecessary distress. The bedtime routine went very smoothly that night
Routines are important, really important, they are the links of certainty that form a safe chain to follow through the day. Breaking one of those links, even inadvertently, can cause real trauma.
I don’t want to put James through that again, so I will be extra careful to check that everything is in place next time… including the wooden dominoes!
Peace,
Mark
All text and images © Mark Arnold / The Additional Needs Blogfather, and James Arnold
See also:
Helping Our Autistic Children Recover From Meltdowns
https://theadditionalneedsblogfather.com/2021/07/26/meltdowns/
The Additional Needs Blogfather 