Routine and spontaneity

One of the things that I find most challenging about life with JJ is the strange juxtaposition of his reliance on routine and need for spontaneity. Sometimes both at the same time!

Routine here at JJ towers takes the form of:

 Eating meals at the same time each day: 8.30am, noon and 5pm.
Eating the same, familiar meals which look and taste the same.
(Although he sometimes has a small window of tolerance if I’m late preparing meals, it’s not a given, and can really cause his anxiety to spike.)

 Bedtime must look and feel exactly the same: fan on; blankets, pillows and plushies arranged in the correct position. Rain sounds on, me lying next to him; Peanut squeezed in between. This needs to be set up at 10pm and he will turn the light off at exactly 10.30pm.

 MindJam – JJ has got to a place where is he able to manage a regular weekly slot with his MindJam mentor. He’s been ‘seeing’ Oli for 15 months, and whilst it’s absolutely not always been plain sailing, he can manage the routine and the anticipation fairly easily most weeks.

Apart from these three things, there is *no predictability to our life whatsoever*.
What-so-ever.

This is where spontaneity comes in to play, and most of the things we do on a daily basis aren’t planned. They just happen.

But, disclaimer!!

 Just because we did an activity one day, and it was fun and felt successful, this does not mean it can/will be repeated. 

At some point, an activity which was genuinely enjoyed by JJ will ultimately morph in to a Demand. And that’s that! Even the mention of it will cause a cloud of worry to come over his face.

And I’ve been listening to JJ and drilling down into the possible reasons:

The activity has now become an expectation for me and for him – and therefore a demand – and his threat response is triggered.

He’s had the dopamine hit of performing the activity once, and he knows the next hit won’t be as strong. Here’s the often seen crossover with PDA and ADHD…

He’s had time to reflect on the activity, and remember some aspects of it which were perhaps less enjoyable, a bit challenging and which now make him reluctant to go through it again now he knows what’s coming. Because there’s the chance of failure, and that is very worrying.

There’s always the chance the activity won’t run exactly as it did last time. What if something changes? What if it’s not as easy or fun? What if it all goes wrong? The disappointment will be too much to bear.

When you lay it all out in black and white like this, it’s glaringly obvious why school is so impossible for a child like JJ.

His brain isn’t wired to be able to go with the flow, to deal with high levels of anticipation, to put his trust in others to plan his day out for them. It’s too much.

So that’s why parents like me often really celebrate those things that appear small.

Yesterday my close friend, who’s also a parent of a PDAer, was thrilled to voicenote me and share that her son had left the house with her to visit family and it was a success!

And I was equally as thrilled to voicenote her back with details of a card game that we had played with JJ and it was lots of fun (and no objects had been thrown ).

My friend and I have both learned to let go of our shared desire for routine, and our expectations for ‘what makes a good day’. And we’re both still learning, adapting and accepting this way of living.

Some days I find it easier than others. But I’m more accepting if I remember that it’s harder for JJ than it is for me.

So, we continue to live this curious combination of routine and spontaneity with our PDA kids.

Parents of PDAers are a bit like chameleons, changing our skin to suit whatever our environment demands, whatever feels safe, whatever colour is needed.

It’s extremely exhausting some days. But letting go of my expectations the best I can, and examining why it is I thought loved routine so much has helped me make sense of my life.