Being a mum of an autistic child I’ve learnt to flexibly adapt my plans to suit my eldest’s mood – often it works but sometimes I end up with slapped-palm-to-forehead woe when I’ve missed something blindingly obvious (like taking him to a fancy restaurant sans iPad, toys or any other variation of distraction so his attention becomes naturally focused on the dainty glassware and heavy cutlery).
having a plan for your plan
Over the years, I’ve learnt to make a plan A, B and even a C for most things; from sandwich fillings to activities. For example, my eldest loves climbing (walls, trees, rocks, furniture – if it can carry his weight, he’s climbing it). So, if I’ve agreed to a trip to the local climbing centre, and this can’t take place, it can only be replaced by a trip which achieves the same aim so, perhaps to one of the local parks which has a climbing wall (this still requires significant explanation and evidenced based rationale as to why said plan needs to be amended but if undertaken sensitively can still lead to a positive outcome).
Ultimately, climbing has to happen because that was the verbally binding contract I entered into and there are no exclusion clauses; I’m well and truly committed. Any retraction of my agreement would be a betrayal in his world of the gravest kind and lead to mistrust, anger and heightened anxiety because the ‘plan’ has been changed so critically.
In practice, this means that spontaneity doesn’t really have much of a place in my home. An example is when I’ve forgotten an ingredient I need to cook a particular meal and need my eldest to come with me quickly to the supermarket to pick it up. If I am to traverse this path, I need to be prepared for intense questioning as to what exactly I need to buy; how – when knowing I was making this dish – I managed to miss a vital ingredient and why an alternative dish can’t be prepared; accompanied by the qualification that I need to wait for whatever activity he’s engaged in to reach an appropriate point when it can be left (this can be anything from five minutes to twenty) or for the episode of whatever is on Disney Junior or CBBBC to have ended.
One of the classic manifestations of his autism is that there has to be an explanation for everything; nothing just ‘happens’. And trying to fob him off with a half hashed explanation is a false economy; if you omit detail you can bet your last penny that he’ll find the loopholes and put your own argument back to you, creating further explanations (or hole digging in my experience) and inevitable delay.
Not unlike a chief prosecutor intelligently unhinging an unreliable witness.
It goes without saying that the old Indian way of parenting (the one I certainly grew up with) of “just get in the car or else” is a huge no-no because it stokes the fires of anxiety, creates stubbornness, foot stomping/door slamming rage and lots of tears – if we’re in this zone, no-one’s going anywhere and nothing’s going to get cooked anytime soon.
All this for some basil to make a basic pesto. I could probably have ordered and have had my food delivered to me on Uber Eats in the time taken from the initial request to accompany me, to our actual exit from the house.
tipping the scales
One thing that puts my son on high alert emotionally is the prospect of being in an unfamiliar environment with people he doesn’t know. He thrives in familiarity – with everything. He has a visual timetable at school so he knows every activity he’s doing and when his breaks are. He likes knowing the rota for his teacher helpers and when one’s off unexpectedly, it can cause him anxiety and derail his day as his insecurity manifests through outbursts of frustration and anger.
He needs to know any changes to the usual schedule (at home and school) in advance so he feels ready for them; he needs to feel like he’s part of the planning process, not like events are being done to him. Through his beautiful eyes there is no discrimination or hierarchy; everyone’s equal. But this means that he wants to be involved in any decision affecting him; from what he eats to where we holiday.
Whereas many neurotypical children love the excitement and anticipation of surprises, for my eldest this is akin to hell. You couldn’t say you’re taking him somewhere but keeping it a surprise without him stressing the whole time as to where he’s going. And until he arrives he’ll guess relentlessly and ask inumerable questions in his quest to know what’s going on.
Knowing things gives him security. It enables him to feel in control and minimises the anxiety that comes with anything unexpected.
His preference for familiarity pervades everything. He loves all foods and will try new varieties of cuisine but if you’re going to change something he likes, you need to tell him beforehand. I once blended spinach into a quiche mix and it turned the whole filling green – he wasn’t impressed and instead of digging in, he spent at least 20 minutes asking for an (adequate) explanation as to why I altered the recipe whilst poking it from various angles to ensure a nether beast wasn’t hiding in the pastry waiting to make an impromptu appearance. Well intended variations from the usual, generally, quickly lead to me being apprehended for my divergence.
So with experience – this is a new journey for me as well as him – I’ve learnt how to make him feel involved and encourage more peer level type coaching discussions rather than trying to flex my parental obedience muscle.
the plan that put all other plans to shame
Recently, feeling smug and content that for once I was ahead of the parenting curve (a rare occurrence), I told him he’d be spending the Easter break at a gymnastics club. I thought this was a foolproof holiday plan. He’d love it because:
- he went to the gymnastics holiday club last year and loved it;
- it was the same gymnastics club he frequents every week and he already knows the teachers;
- his gymnastics training is massively boosting his confidence, flexibility and balance and he’s regularly chosen for demonstrations – which appeals to the showman in him.
However, instead of the awaited ‘thank you’, I was met with a look of pained disappointment and the statement “but I don’t want to go mummy”.
This was plan A; there was no alternative – I was so sure of plan A’s success that I had flippantly discarded the requirement for a plan B let alone C.
Alarms started going off in my head; I was thinking “but he has to go, there’s no alternative” whilst knowing that there is nothing I can make him do. My part time work means that my annual leave is pro rata’d and quickly consumed by half term holidays, a bit in summer, Christmas and inexorable medical appointments.
I felt that my unpreparedness had completely exposed me as a failed autism mum. If I couldn’t predict what my son wants and likes then no-one could.
I started rapidly scanning options in my head. All the holiday clubs locally would have been booked months ago and the choice of going to just any one isn’t a luxury we can avail ourselves of; I need somewhere that can accommodate his needs and where I can spend at least the first day settling him in and ensuring he’s getting enough one to one attention and is comfortable.
But why didn’t he want to go? Like a barrister mentally trying to work out all the possible answers to the question before completing my sentence whilst simultaneously tiptoeing the line between aloofness and incredulity, I asked: “what’s wrong? why don’t you want to go?”. He replied “the place is different, it’s a girl’s school and I won’t know anyone”.
Oh heck – he was right (cue slapped-palm-to-forehead woe again).
Yes, it was the same gymnastics club and teachers but they relocated the holiday club this year to another school ten minutes away. This was a change in his world and I’d not prepared him for it at all. Damage control was needed for sure, but this was still a concern I felt I could reassure him about. I explained that the place was different and on the first day he’d need to learn where the toilets and lunch rooms are but after this, it would all be familiar. He was contemplative – a good sign.
With point two, I explained that usually it was a girls’ school but in the holidays it was for everyone; this explanation created no extreme reactions – another positive.
I explained he’d know other children from the club. “Who?” he asked, his interest peaked and wide eyes expectantly awaiting my reply. I was stumped. I couldn’t say for sure who’d be there; I don’t know any of the children’s names because there’s so little interaction with the parents at the class.
Generally when the children are reunited with their parents, it’s akin to a swarm of ants being released, each running to their respective carers who bustle them up and usher them out of the door whilst their arm is still half way through their jackets. (I’m as guilty of this as anyone, steering him to the car whilst he practices gymnastics moves in the car park, so I can get back to my tired toddler and avoid the looming 10 minute catnap which will recharge him and make sleep elusive for everyone).
To add to my ignorance, some parents elected for the odd gymnastics day and others (like me) put their children in for the whole Easter break. I expected that on a balance of probability someone either from his school or the gymnastics club would be there but I couldn’t specifically say whom or on what days.
‘Probably’ is not an answer my eldest can understand; it’s too uncertain. In his world things are black and white – it’s either happening or it isn’t, it’s guaranteed to be fun or it’ll be as boring as sin.
the failed oracle
In this case his gym buddies would either be there or not and why, as the mummy, do I not have this critical data? In his world, I know everything; I’m the supreme oracle, knower of everything with mental arithmetic abilities akin to Gauss, artistic abilities in the region of Van Gogh and the singing skills of Ava Max (he totally loves her). So on top of being fairly mediocre in these categories at the best of times, today, I didn’t have the answers to his concerns either.
“I don’t want to go” he said. “I’m scared that I won’t know anyone”.
Now what? It was Friday and the Easter break had started. My racing mind (and heart) flitted between “I need a back up plan” to “what other clubs did I know?” to “if I ignore it and wait until Monday, what if he plainly refuses to get ready?” to “I’m expected to be in training at work, how can I negotiate this when I’m perpetually self-conscious about working part-time?”.
In that moment I had a choice about how I was going to react to this situation. I could create a frenzy around me (and within me) or I could see it for what it was – my autistic child who looks to his mummy for security was telling me he was scared and supporting him was my priority.
So I cut the negative self talk and told myself “If he goes happily on Monday, great – that’s plan A. If not, we’ll work it out whether that means I stay with him at the club or at home – and everything else will be dealt with once I know he’s ok”. I needed to say this to myself to (a) be ok with the absence of planning involved in this ‘plan’ and (b) acknowledge that I succeed as a mum everyday and not to allow negative self-talk to unhinge me when things haven’t gone the way I’d intended.
With this clarity of mind I told my son I had a proposition. He could counter it if he disagreed with any part of it (as if he needed permission) but he needed to hear it first; this was the peer level coaching in effect.
I had his attention.
I acknowledged that his feelings of nervousness were valid but unless he tried a day he wouldn’t know if he liked it or not. I proposed that he attempt one day – I’d stay with him until he felt comfortable – and if he didn’t like it, he wouldn’t need to go to any more; no questions asked.
It was a successful negotiation which ultimately resulted in him completing two weeks there and even obtaining two grade promotions. But even if it hadn’t played out that way, he’d have still had a happy time with a quickly cobbled scheme essentially consisting of being ferried between my husband and I, his doting grandparents and someone else I could rope in (that he likes) to exhaust the local climbing, soft play, cinema and trampolining facilities.
I learnt two things from this situation:
(1) my son’s autism makes him so hypersensitive to change that as much as I’d love to plan for every eventuality, this is plain unrealistic. I need to get comfortable with this knowledge because it’s so counter intuitive to my highlighting-Post-it noting-mind mapping-diary managing self;
(2) whenever something purportedly goes wrong with my son, I turn to myself to ask what I did to cause it. And yet when it goes well I don’t credit myself with equivalent speed. Listening to my inner dialogue, cutting it as soon as the ‘blame’ conversation starts and replacing it with the question of what I can learn from the situation has literally saved me from self destruction.
Steve Chandler insightfully says “Only two things can result from having expectations. One: the other person will not meet your expectation and you’ll be disappointed (or even betrayed). Or, two: they will meet your expectation, and because you expected it, you won’t feel anything, because, after all, it was what you expected. So your states of feeling will either be Disappointed or Nothing” – Crazy Good.
So the me of today is planning not to over plan and not to hold expectations of others – including my son.
I should probably do a quick mind map to make sure I’ve explored the remit and ramifications of my new plan…