Mummy Doesn’t Always Know Best; the Benefit of Coaching in Parenting

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.

boo!

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.

no surprises

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”.

what?!

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.

cross examination

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.

who’s going?

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.

chop chop

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.

life’s lessons

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…

Photo by Annie Spratt on Unsplash

How my autistic child made me a better communicator

We were over the moon when our son was born five years ago. After my earlier miscarriage – see Don’t say the ‘M’ word – I was in a heightened state of stress wondering if I’d get pregnant again or be able to carry a child to term.

When he was born I was still in a state of shock that he’d actually arrived (the 22 hour labour did make me wonder if he ever intended to appear) until he was physically given to me naked and scrawny and I enveloped him in my arms in a way that told him he was the new love of my life and into whom I’d pour every aspect of myself to nurture him. Like a mere 2% of the population, he was born on his due date which just made him more special (I value punctuality in everybody) but little did we know how special.

something’s not right

We suspected something wasn’t quite right when at every parent’s evening we were told that he’d met or exceeded all his EYFS goals except one – social and personal development. He struggled with sharing and could be dominating and loud, sometimes hitting out but I just put this down to being an active little boy.

Another parent’s evening came and went and then another. Two years passed; the feedback was the same. Jay* was different – and displaying increasingly challenging behaviour. One day the nursery sent me a video of him throwing books and chairs around the classroom; the rest of the children had to be evacuated whilst the staff tried to calm him down. As a parent I’d constantly ask myself if I’d spoiled him because he was our only child; maybe we missed the cues when we ought to have been firmer setting boundaries. Maybe we’d created a child who was totally out of control and would never conform to an educational establishment; the guilt and anxiety seemed to pile on exponentially with each nursery report.

They told me that in its 15 year history, they’d never seen a child like him before – that was a stab in the heart if ever I’d had one.

searching for answers

For two years I knocked on the doors of every relevant medical professional; clinical psychologists, speech and language therapists, occupational therapists and paediatricians. In my outwardly ordered life, I’d plan our family meals and weekend events, ferry Jay between singing, dancing, martial arts and music classes, but inwardly I was in a state of complete uncertainty. Something was happening to my son but I had no idea what, or why, or how to fix it.

Every out-of-the-ordinary tantrum would be calmed with distractions such as YouTube nursery rhymes or biscuits and lots of reminders of how much we loved him. He was our only child and his behaviour is all that we knew. I’d use other kids’ behaviour as a comparator and rationalise Jay’s behaviour against this, always keeping that inner monologue going that he was just an active, clever and exuberant little boy and explaining any seemingly irrational behaviour away.

Finally we obtained a diagnosis of autism in 2018; Jay was aged 4.

the prodigal son

For most of his life, Jay was the only child. Between his parents and grandparents not to mention his aunties and uncles, Jay was doted upon as if he were the first child born in the world – ever.

And then I had another son.

This one (at least so far, although he has his moments) is neurotypical. This is just the science-y way of saying he’s not autistic and what in base, common language would be called “normal”.

realisation

It was only after the birth of Ash* and over the past three years that I’ve learnt and understood what “normal” child behaviour actually is (though there are days when I think he’s auditioning for a devil child movie role; he’d get the equivalent of an Oscar for a three year old).

I’ve also seen how Jay’s autism has influenced his brother’s behaviour. As the big brother, Jay is idolised. But with that comes the need to play with the same things Jay plays with, draw with the felt tips that Jay uses and copy the behaviour which Jay displays when he’s frustrated. The latter is extremely tricky; how can you explain to a three year old that the reason you’ve given Jay more latitude to let off steam when he’s kicking and screaming is because he’s neurologically different but that it’s totally unacceptable when he does the same and will initiate the warnings – timeouts – repent process?

what’s normal?

Up until Ash was born I didn’t realise I was an autism parent – I thought I was just a parent going through the usual motions of having a child who didn’t listen, would test me with his behaviour and drive me to every parenting resource on the market to do with establishing good feeding habits or a sleep routine. Ash’s arrival showed me how different my parenting experience was from those with neurotypical children.

Here are just a few examples of their differences and how they manifest:

feelings

Jay has an extraordinary vocabulary way beyond his years; he can tell you the rules of English grammar with the parlance of a prim and proper school teacher. But he can’t label his feelings beyond happy, sad, angry and more recently, bored (is it a rite of passage for kids to learn this word and use it at every possible opportunity?)

So when he came home and said he felt ‘devastated’ I thought “that’s it, we’ve cracked it – he’s mastered how to express himself!” (I had parked asking about the actual cause of the devastation momentarily) for this was a momentous occasion. Except it wasn’t and he’d heard the story of Romeo and Juliet at the Year 5 assembly and the word ‘devastated’ was used to express the feelings of the Capulet and Montague families at this union. [Note to self: (i) emotional labelling won’t just hit him like a meteor and (ii) remember that he has a razor sharp memory which can often mislead people to think he actually knows what he’s talking about…].

In contrast all Ash ever talks about are his feelings, like a Hollywood diva that’s overacting and to whom I have to offer a lens of realism, i.e. you’re not starving; you ate your lunch 30 minutes ago.

literal translations

The other week I said to Jay “you’re the apple of my eye” and he looked at me with the  most confused expression. “What are you talking about mummy?” he said. I replied “it’s just an expression, it’s a way of telling somebody that you really mean a lot to them”. “Oh” he said and looked up and away in thought as he often does. “In that case mummy” he said with a beaming smile, “you’re the cucumber of my eyebrows”.

I often fall into the trap of using abstract language or terms when I’m talking to Jay and which his brain struggles to compute because he takes things so literally; for example, if I say I’m coming in a minute, he’ll start counting to 60. The use of expressions or common phrases is particularly unhelpful and can make a standoff situation worse but on this occasion, I’m glad I tripped up. Jay found a new way to express love for me. And it was the first time ever I’d been called a cucumber.

Ash on the other hand chooses to express his love by parping on my lap. Go figure.

domination

Sharing doesn’t come naturally to Jay. I’ll tell him to share, he’ll acknowledge my request, tell me he’s sharing (and believes he is) but he’s really not. Jay has an innate need to control proceedings. If it’s a tea party he’s in charge of the setup, menu and guests. You’re welcome to come with your teddies and toy characters but you don’t get a say in what you’re eating or where you’ll sit. Kind of like a tea-party-throwing-child -dictator; and this applies to everything. For example, he loves to play Articulate but the sand timer empties at 30 seconds. Because this simply isn’t acceptable to him, whilst everyone gets 30 seconds to answer as many questions as they can, Jay gets 1 minute 30 seconds. He’ll unabashedly (remember the emotions thing, he doesn’t feel embarrassment) turn the timer over until he’s completed 1 minute 30 seconds.

Invariably due to a combination of his intelligence and his cheating, he wins the game. And this is the result he expects every time because in his mind everything is polarised; win or lose; black or white – grey just isn’t a thing.

Ash however doesn’t care who wins Articulate (we simplify the questions for him). He loves the end of the game because it means he can put the triangular playing pieces on his fingers and pretend to be a witch.

contrasts

Oh the paradoxes, I could rattle off new ones everyday. Jay loves a loaded cheese toastie but doesn’t like melted cheese on his pasta; he insists on wiping every bit of food from his fingers when he eats so they’re immaculately clean but will happily pick up all sorts of unknown rubbish from the streets or dig soil with his hands. His room must be clean and tidy right down to the positioning of his favourite Lemur toy but his activity shelf downstairs is permanently at risk of collapse because of what he hoards there; one day the slight shift of a pencil is going to cause a paper hurricane complete with tumbling yo-yos, plastic medals and paraphenalia from the CBeebies magazines.

Ash’s just permanently messy.

broken record syndrome

At one point I wondered if I’d mastered invisibility because it seemed everything I’d say to Jay just wasn’t heard. I’d repeatedly say he needed to get ready for school (translation: put your shoes and coat on and wait by the front door) and even after the tenth request – nothing. The little one however, upon the first request, completes this and is now swinging from the bannisters trying to entertain himself whilst he’s waiting for his older brother. So I’m getting more stressed, we need to have left for school and I’m worried my morning plans will be thwarted by a hospital visit courtesy of the bannister swinging child attempting a trapeze act.

Many versions of this going wrong later and me generating red mist, I now have a better understanding of how the autistic mind works; I’ll split my generic request into three specific ones and only deliver one at a time. First shoes, then coat then door. Job done, well for the purposes of exiting the house. This manner of communication needs to be applied to every interaction with Jay, whether it’s a request to come to eat at the dining table, do his homework or get ready for bed.

Intense, hey?

But actually I’ve come to learn that this isn’t about dumbing down communication with an autistic child or heightening communication with a ‘normal’ child. It’s about clear communication – and everyone benefits from that, children and adults alike.

Don’t we all like to be told what’s required of us, why, the objective and then be acknowledged when we’ve executed something well? That doesn’t mean we’re  autistic.

my take-away

I believe that being more mindful in my communication has made me a better parent to both children. I take my time to explain what needs to happen, why it’s happening, coach them through the consequences of not doing so and acknowledging them positively when they do what’s required, especially if it’s off their own backs.

In doing so, I’m showing them that I respect them as people within their own right; they may be little but their voices are as valid as anyone else’s. I don’t adopt the role of a parent-dictator whose orders must be obeyed; just as this wouldn’t empower or elicit engagement with my team at work nor would it do so at home.

Having to pale back the language I use and be really clear on my intention when I’m trying to communicate something has benefitted me in all my roles as a parent, manager, friend, wife, daughter and sibling. This method has helped me to go inward and understand if I’m asking for something because it’s comfortable and the way it’s always been done or because there’s a necessary value in doing so. And it’s enriched my relationships as a result because there’s purpose and rationale in what I’m communicating.

Yes it’s stressful and sometimes overwhelming being in a high octane household coping with the din of light sabre fighting with intermittent stopping to make armoury out of construction bricks or do an impromptu dance to Rita Ora – all before 8am. But I’m so grateful for the challenges I face as an autism parent; it’s forced me to tap into my inner reserves of strength, to question and to adapt how I communicate and gain a better understanding of how people like to receive information. It’s made me a better parent, a kinder person and an empathetic team leader.

And adopt the existential persona of a cucumber.

There’s not many that can boast of that.

 

Photo by Harshal S. Hirve on Unsplash

*names changed