6 Steps to an Autism Friendly Christmas

Christmas can be stressful for an an Autistic child

As you know, my eldest son is autistic and over the years we’ve adapted how we celebrate Christmas so it’s something he can enjoy and participate in too. For all those parents out there like me, you’ll understand that it’s a constant trial and error experience!

But here are my 6 top tips for making Christmas as stress-free as possible for your autistic child.

🎄 Limit the number of presents

One thing which really overwhelms my son is when lots of people are giving him gifts and waiting expectantly for his reaction – be it gratitude in the form of hugs or words of appreciation. All of this creates sensory overload for him and you can visibly see him check out or head towards Meltdown Central. So to mitigate this, I limit gifts to one in the morning and one in the afternoon. That way he can open, appreciate and enjoy his gift with the remaining gifts being slowly distributed over the days and weeks that follow.

🎄 Keep your noise levels in check and have an exit strategy

When we’ve had Christmases with a few families over (granted not this year!), I create a safe retreat in an area of the house which is exclusively for my son. Sometimes I’ll set up Lego in there or another calming activity for him. But this is his space for when the noise might build up and he just needs to have some alone time. He knows about it in advance and on the day, I might suggest he goes there if he’s getting anxious or he might do so himself. Knowing he has this brings him a sense of comfort because it’s an escape route available exclusively to him – no questions asked.

🎄 Don’t expect Christmas food to be welcomed because it’s often different

I prepare my sons favourite meal the day before to minimise stress on Christmas Day and it’s often some type of pasta dish. For me, it’s not about the meal but about the shared eating experience and creating positive food relationships. Given my son’s difficulties with social interaction, if he’s able to sit at the dining table and interact over a family meal, then I consider that to be a huge success.

🎄 Remember your routines

It’s easy for timings to slip over the Christmas period; I like to have a later breakfast, maybe watch a Christmas cartoon with the kids before breakfast (they’re up from 5:30am!). But I make a point of explaining what the routine for that day looks like including what’s planned, who might pop over (even if it’s a doorstep present drop) and what time. That way, my son’s not caught off guard by what’s happening and any anxiety around this is managed.

🎄Don’t force them to dress up

No Christmas outfits, elf ears or Santa hats in sight on Christmas Day. My son is most comfortable when he knows what’s happening and everyday is more or less similar. Therefore if wearing a tracksuit and jersey top on Christmas Day makes him comfortable, that’s what he’ll be in. It doesn’t mean he’s any less excited or engaged about Christmas, just that there is some sameness about the day which means he can cope better with some of the other distractions the day will inevitably bring.

🎄 Start the return to your usual routine in advance

Over Christmas, we let our son stay up a bit later and let him mooch about in his pyjamas in the mornings too. But around five days before he is due to return to school, we slowly wean him back onto the usual school routine such as being in bed by 8pm and getting ready in the morning before he comes down for breakfast. That way, when he returns to school, the transition is managed much more easily.

I hope these tips are helpful. It’s been a challenging year for everybody and no less for those parents of children who have additional needs. Hats off to you parents out there for everything you’ve coped with.

May the year ahead bring our community closer together so we can continue to help our special children realise their incredible and innate potential.

Merry Christmas to you all ❤️

6 Tips on Engaging with my Autistic Son

spoiler alert: see the child before the autism

I’ve experienced an array of reactions when I explain to people that my son’s autistic – and these aren’t just random people; it could be a school mum I speak to or a family friend. Sometimes you can see their faces glaze over and their brains whirring away as they think “what do I say to that?”, “how do I acknowledge what she’s saying without making it look like pity?”, “how do I interact with her son when I have no real idea what autism is?” and there are plenty more captions I could place to the expressions I receive.

The good thing is that – and you’ll see this from the questions – they’re all coming from a place of wanting to understand and be supportive. But sadly, sometimes we get so caught up in the quagmire of what we should and shouldn’t do that often we do nothing. Perhaps that’s from a place of fear; fear of being seen as ignorant; fear of offending someone; fear of accidentally saying something that might make you seem like you’re anti-disabled people – who knows? That’s one for another blog.

But I honestly believe that if people worried less about how something might be perceived and instead, just asked what they were thinking, we’d all understand each other much better instead of constantly trying to interpret what someone’s lack of reaction or muteness might have meant. It’s not only psychologically wearing but we end up creating stories and reaching conclusions in our head about people that simply may not be true. And we’ll remember those stories the next time we see them which will play out in our interaction with them – and so there’s this whole psychological warfare thing going on when people truly only want to be on the same side.

stop wondering

Recently a friend told me her son had muscle tone issues; I’d heard of Duchenne and Muscular Dystrophy but to be honest I still couldn’t tell you much about either condition. So I asked: “sorry, but I don’t really know much about this condition, what is it and how does it affect James on a day to day basis?”.

No-one knows everything and even if you do know some things about certain conditions, unless you ask you won’t know how it affects the child you’re discussing or their parents for that matter. So, stop wondering and just ask. Whenever anyone’s asked me about my son’s autism, I’ve never passed judgement even when they described him as learning disabled or even just referred to him as naughty; at least if people say what they’re thinking it opens the way for me to correct them and explain that he experiences the world differently to you and I or whilst it seems that he’s not listening to me (he generally avoids eye contact when you talk to him so it can look like he’s not paying attention),  in fact, he’s absorbing my instructions and processing them – and he’ll respond after a short delay.

“The characteristics of autism vary from one person to another, but in order for a diagnosis to be made, a person will usually be assessed as having, along with other issues, persistent and significant difficulties with social interaction and social communication.” National Autistic Society

So, I thought I’d offer some tips for when you meet my son. If you have an autistic child or know one, these may resonate with you. However, equally, because autism is a spectrum condition your reality might be so different to mine that my tips feel alien. Either way, I hope there’s some light which you can glean from these.

tips

#1. No open questions: When you come over and want to play with my son, don’t ask him what he wants to do – open questions like this are overwhelming and he’ll end up opening lots of things and flitting around for an hour trying to find the perfect activity. Instead, boldly suggest something , i.e. shall we do a puzzle together? There are only two possible answers to this which creates less confusion and so in turn, less anxiety which means he’ll be more focused and will engage with you.

#2. Be honest: If you politely say “why don’t you come over for a playdate?” he’ll ask you for the date, time, duration and what he’ll do there. He is very literal so whilst you think you’re being polite and making conversation, he’s actually making plans so be prepared to honour them or just don’t say something you don’t mean. The same applies to the language you use; colloquialisms or phrases only serve to create confusion in the literal minded – I once made the mistake of saying it was “raining cats and dogs” and it utterly petrified him.

#3. Avoid games where there are winners and losers: games such as Snakes and Ladders are kept out of sight and reach in our home because when my son loses, he loses hard – it can be literally devastating for him. In his mind, if he’s lost a game, it’s as if he’s lost at life. Melodramatic, yes. But very much true.

Instead opt for collaborative, team based games such as Articulate, Charades, or Pictionary. With these, I often manipulate the time, giving him 90 seconds instead of 30 because if he has slightly more time, he’ll answer more questions and get to the finish line sooner.  Before I get bashed by the honourable parenting brigade about not teaching my son to be a graceful loser, remember that he requires more support with social integration and interaction than a neurotypical child who gets social cues and the like; mixing with others doesn’t come naturally to my son and he’s much happier in his own company. So if tweaking the timer means he plays with others on a focused goal and can experience being a team player, well that’s what I’m prepared to do. I know this won’t work forever but for now, I can get away with it.

With everything I’ve experienced so far on my autism parenting journey I can say that I’m constantly learning and adapting – there are ‘eureka’ moments when you’ve cracked something but they pass swiftly and are replaced with new situations and challenges. So I’m going to maximise on this one whilst it lasts.

#4. Don’t expect an equal partnership: My son’s dominant in his play with others. He’ll play alongside you if you’re Lego building but not with you – not in an integrated way like children who role play mummies and daddies, engage with each other and jointly enact a situation (i.e. mummy converses with daddy and makes a plan to go to the shops whilst he cooks dinner).

My son requires play to be more structured – no surprises or reactive situations – and the only time this sort of simulation has ever worked is where he plays a restauranteur/chef where you’re the customer and he tells you the menu and what you’ll eat (you can’t choose). He’ll clear the dishes when he’s ready even if you’re mid-sandwich and outstretch his hand for payment of plastic coins. It’s all on his terms. You might get a pudding but it depends on whether he’s in the mood to keep playing or not.

Oh, and you might be required to dress up according to the customer he wishes to serve that day. So, confidently don the top hat, monacle and clip on giraffe’s tail and pretend you’re at an after dark tea party at the zoo.

#5. Cast aside your inhibitions: My son is flamboyant and doesn’t feel nervous about performing in public; in fact, he struggles to identify and label this emotion (and most others). And he thinks that everyone is just like him. He’s an exuberant showman so be prepared to be enlisted into an impromptu show – obviously he’ll be the main event but you’ll get a small role as a (non-speaking) extra and be told what to do. Warning: will probably involve Hawaiian dress up, chorus singing and dancing. 

#6. Don’t be offended: I’m very careful about where I take my son on trips out and which play dates or parties I agree to. The main reason being that if it’s going to be an assault on his senses which may send him into sensory overload, it’s better (for everyone) that I decline. Things like house parties where the kids run ragged and tear the place apart or pottery painting parties are challenging because the former has no structure so he literally doesn’t know what to do with himself nor integrate himself into others’ play and the latter is so structured that one wrong brushstroke can immensely upset him and lead to a meltdown. So if I say ‘no’, understand that I’ve definitely considered your kind invitation but it’s probably not the best environment for him.

just ask

And finally, if you genuinely want to know how he’s coping with life, ask me. If you just enquire “how are things?” or “how are you?” you’re not telling me you’re ready or willing to hear how things really are. We all have our own daily stresses and strife and might not be ready to hear about others’ difficulties – and that’s ok. I know it makes some people uncomfortable talking about autism and it’s fine, you don’t have to. But if you are ok talking about it, then ask me things like “how is he getting on at school?” or “how are you managing with so much going on?” and I promise to give you an honest answer.

If you read these tips back and eliminate the autism lens from it, that is, imagine that I’m just writing about general tips for effective communication with children, you’ll see themes of authenticity, clarity and honesty which are qualities that all children respect and respond to in adults.

Sometimes we see the disability or condition before we see the person behind it and we need to consciously rewire our thinking to stop doing this. Ultimately the call for easier communication with my autistic son is the same call as that for communication with any child; clear, meaningful and engaged dialogue.

Now, please excuse me whilst I don a silver plastic tiara, floral garland and doctor’s coat – I’m required at a piano recital of nursery rhymes interspersed with acrobatics, imminently.

 

Photo Credit: Charamelody via Flickr

 

 

 

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

How I’m turning yesterday’s pain into tomorrow’s promise

I’m the eldest of three children who grew up in a traditional Indian Gujarati household where the gender roles were squarely defined. This meant that from the age of eight, I’d stand on a brown plastic chair and wash the dishes because I was too short to reach the taps. By the age of 11, I was folding clothes, vacuuming, polishing and generally keeping house as well as being chief chopper of vegetables. I wasn’t unlike an Indian entry level kitchen porter who’d wash each spinach leaf in cold water to get rid of the mud (no one likes mud in their bhaji*) but never had the opportunity to do the cool stuff mum did like putting the array of spices in the dishes (freehand of course, no measuring).

low necklines, short hemlines

Being the eldest put a lot of implicit and explicit pressure on me. I had to be the academic role model and also the epitome of ideal behaviour (no boyfriends, alcohol, bad language, backchat, low necklines, short hemlines to name a few) because if I wasn’t our family reputation could be tarnished and no-one would marry me or my sister (cue dramatic music). At least that’s what I was told.

Looking back, I don’t mind that I was expected to do well at school and beyond; it made me aim high and push myself and if my parents didn’t keep reminding me of how hard they were working to enable us to have an education, perhaps I wouldn’t have such a sense of gratitude and value for their sacrifice now.

doors

But I never felt good enough; I never had a sense of worthiness. Praise was directly connected to academic achievement but even then, every accomplishment was met with a “good – make sure you keep doing it”. I formed the connection that as long as I did well academically I’d be worthy of attention from my parents otherwise that attention – however momentary – was inaccessible to me. I believed that my academic achievements were the key which unlocked the door to my self worth but the problem with this was that behind each door I opened, after the immediate high, I was faced with another door to unlock – so self fulfilment was always just out of reach.

My parents weren’t the touchy-feely type; I think post adolescence the most physical contact I had (and still have) with my dad is when I touch his feet in reverence at the beginning of each new year. I’d get birthday ‘pats’ from my mum but no bear hugs or kisses – that’s not to say they never happened when I was a child, they probably did but it just wasn’t the done thing in our house certainly from around age 11 onwards.

and?

So what, you might ask? What difference did it make because ultimately they fought all odds to provide for us, working seven days a week running a grocery shop and scraping by financially such that physical, let alone emotional, nourishment probably never even crossed their minds.

The difference is that if you don’t instil a sense of self worth in your children, they’ll seek validation from others. And if they’re not getting emotional validation from home, then they’ll look for it outside – and that’s risky.

I did just that.

searching

Although I didn’t know it at the time, I had all the usual insecurities that come with being an adolescent Indian girl  – my dark upper lip hair was growing, what was I supposed to do about that? Why was I so plump compared to my tall, elegant White British best friend? How did I navigate the world of fashion when all I knew how to wear were matching tracksuits my parents bought from the cash and carry? And so much more.

My mum and I never talked about girly things like this or feelings generally so I looked outside to learn about the world. I learnt from friends to cake my face with makeup which hid my insecurities about my appearance and to wear fashionable, attractive clothes which hid the parts I didn’t want to draw attention to. The dolled up Reena was more outwardly attractive and drew the attention of the opposite sex – finally, some validation that I was beautiful, clever, funny and worth spending time with.

This all could have gone so horribly wrong. In the wrong company, I could have had my self-esteem eroded to dust or taken a completely self destructive path in my pursuit of worthiness. Luckily, my story didn’t travel that way but I was dangerously close.

And for many young people, this is how their story might play out – regardless of gender.

nourishment

As a culture, we have to make a conscious shift to nourish the emotional and mental health of our young people. I know that it’s harder because historically our ancestors didn’t do this and so it doesn’t come naturally to many Indian parents (my father was beaten daily by his dad and my mother never had positive affirmation from her mother) – but that doesn’t mean that we can’t change.

Don’t get me wrong, we’ve nailed the ‘stiff embrace and patting’ technique – you know the one we give to friends we bump into in the street or relatives we meet at weddings. The type of contact which acknowledges someone without needing to put any feeling into it.

I’m not saying we should dispense physical contact to everyone we meet like chocolates to Trick or Treaters. It’s much more complicated than that and it starts with how we treat ourselves before we think about how we treat our children.

who’s thirsty?

You’ve heard the saying you can’t pour from an empty cup – well for me this certainly rings true. I’ve reconciled with myself not to resent what I didn’t have emotionally whilst growing up and instead to be grateful for the experiences I’ve had which make me who I am today. I’ve learnt to square up to my past without feeling shame or regret and to use my experiences as the foundation to influence positive change in me, my family and wider.

Something which the author Elizabeth Gilbert** said sums this up perfectly:

The things that have shaped me most are the failures, mistakes and the disasters but here’s a very important thing to recognise… failure, disaster, shame, suffering and pain do not necessarily make you a better person unless you participate in turning it into something good…

Never waste your suffering; suffering without catharsis is nothing but wasted pain… If you don’t transform from your pain then it was for nothing, you just suffered for no reason whatsoever… when bad things happen I think “how can I grow from this?”

We’ve all suffered some trauma in our lives – be it actual harm or the absence of something – but we’re all empowered to use what we’ve learnt from it to transform our lives for the better.

what I’m saying to my children

I’ve made a deliberate and conscious commitment to myself to raise my children in an environment of love and positive affirmation. I praise their efforts – not the result – when they draw (even if I don’t know what on earth I’m looking at); I tell them they can accomplish anything they put their minds to; I hug and kiss them everyday not in response to a good report but just because (this sometimes irritates them); I tell them I’m so proud to be their mother; I don’t label them, only their behaviour (i.e. instead of saying “you’re really annoying me”, I’ll explain “the longer you take to put your shoes on, we’ll have less time to play in the park” (don’t be mistaken, I get this wrong daily but at least I’m able to pull myself up on it and correct it).

drops creating wells

Will it make a difference? I think so. The drip effect of showing them everyday that they’re valued as people within their own right – not because of something they’ve said or done – I’m convinced will lead to an inner well of self worth where they won’t need external validation that they’re good enough; they’ll know that they just are.

We are all humans whose primary nourishment comes from love; love of oneself and love to others. And we’re each empowered with how we want our culture to be carried forward for generations to come. Do we want a culture where academic achievements define our children’s self worth? Or where their sense of worthiness is entirely dependent on pleasing others? Do we want to raise our children thinking they need to earn affection like a trader in the market place where self worth is traded on the size of the accomplishment, so the more you do the bigger pat on your back you get?

This is the way to go if we want society to be filled with children who are materially fulfilled at the body level but are emotionally empty at a soul level.

pouring nectar

Love can’t be assumed; it’s not translated through university fees being paid or items being bought. Pure, nourishing love which reaches your soul is felt from one heart to another.

So let’s make a commitment to ourselves to acknowledge our own past hardships and use the strength those experiences have given to us to affirm our own self worth. Once our cup is full we can pour into our children’s through our language and action; remembering that each child is a spark of divine human creation whose deepest need and soul nourishment is simply to be loved.

Without qualification.

Just as they are.

 

some notes:

*bhaji – a dry spinach curry

** taken from a podcast with Oprah Winfrey named Super Soul Conversations; Elizabeth wrote the hit Eat, Pray, Love

Photo by Hossam M. Omar on Unsplash

Don’t say the ‘M’ word

Seven years ago I lost my baby. Though others didn’t call it that. It was called a ‘missed miscarriage’, a foetus, a zygote and ‘it’ – but never a ‘baby’. Never a word that reflected what by unborn child ever really meant to me. I found out there was no heartbeat just before I was due to have my first scan.

For me, this baby was everything. I had a lovely home and a wonderful husband; my baby was the missing piece of the puzzle. When I started bleeding, I Googled every possible normal cause there could be – anything that could be an alternative to miscarriage because I couldn’t bear to think that this story ended in any other way than my child coming into this world in six months’ time.

Fantasies

I’d already imagined their features and pictured what our new life would look like. My husband and I would talk to the ‘bump’ about our family members, our lives and sing to them. I’d imagined scenes of us taking a stroll in the park, feeding them, stroking them to sleep gazing at their innocence and angelic beauty. I’d thought about their room, possible names and how loved they’d be by our family.

When it all fell apart, the way I was treated was anything but emotional or with care – a complete juxtaposition. I was processed by the hospital; just another ERCP and sent home as they worked through their list of patients in the same boat. What was for me such excruciating trauma emotionally and physically, I guess for the medical staff was as commonplace as the removal of a tooth by a dentist.

Searching

I remember feeling so desperate and alone and searching on the Internet for answers. All I came across were forums where mums were asking the same questions that I was thinking, why did this happen? Was it something I ate? Did I not take care of myself properly and thus put my unborn baby’s life in jeopardy? I just wanted to know why.

I turned to my culture. I was told by some relatives that losing this baby was actually a blessing. That according to karma (paying off the debt of your past actions) and reincarnation, conception was all the baby needed in order to achieve their ultimate realisation and merging with God. This concept was so ethereal and difficult to grasp from my limited human mind but strangely, it did provide some comfort. But not the practical answers and reasons I was looking for. What I learned much later was that there wasn’t a single definitive reason for this happening which I could hang my rationale on and point to as something I would never ‘do’ again.

I was looking for a cause; something I could blame. Then I could demonise it and cast it out of my life forever.

The logical mind looks for reasons I suppose. But what I really needed at that time was the ability to walk and talk through what I was going through with people around me.

Starvation of conversation

But people were afraid of asking me how I was and I was afraid to bring it up directly in case it made them feel uncomfortable. So here we all were circling the subject, each pretending that we were achieving Oscar winning performances wearing the ‘look’ we thought most appropriate for the occasion when the reality was a palpably awkward environment with everyone itching for an exit stage left.

So what were we all afraid of? Were people afraid that if they talked to me about it I would cry? Did they think that I was on my way to forgetting about it all and perhaps talking about it would set me off again? The irony is that the longer I didn’t talk about it the harder it was to deal with. I would’ve really appreciated those around me asking me “so how are you feeling today?” Or “how are you coping with your loss?” This would have at least told me that they were open to hearing about my feelings.

Now I realise that this is about way more than talking about miscarriage.

The problem with asking someone “how are you?” is that you never really know whether they’re asking out of politeness or whether they are genuinely enquiring about how you are coping emotionally with life.

You just don’t know how much of your feelings or experiences to offer up in response when you’re asked this question.

Realisations

I’ve learnt so much from this experience. I’ve learnt to ask people specifically how they are in relation to whatever is going on in their life. I want to be the best mother, sister, friend and wife I can be and I realise that this means being open emotionally and also being prepared to share my own experiences so that others can identify with me.

That’s one of the reasons I’m talking about this today. It’s crucial to acknowledge that it’s not only helpful to talk about emotionally destabilising experiences but that any trauma requires a healing process and internal reconciliation – not just burying it within, which like graves in a cemetery eventually crack through the earth’s surface and manifest again waiting to be dealt with.

Showing up

I remember from my childhood the days when something happened and my parents would make a phone call using the old dial telephone to offer support (you know, the one which if you got a digit wrong you’d have to start the whole dialling experience again) and then if practical, they’d turn up at that person’s house. They didn’t have a lot to offer, certainly not showing up with gifts, chocolates, flowers or any other token item. It was just them. People. They’d show up as a sign of solidarity and whether they said it explicitly or not they were telling people that they were there for them.

Sometimes I feel like we’re living in a parallel universe. How can it be that in a world where you can speak to someone through video phone on the other side of the world in a fraction of a second with complete digital clarity, we’re actually more emotionally isolated from one another than we’ve ever been?

The digital age has made it all too easy in times of suffering for us to just send a vanilla message – “sorry to hear your mum’s died, I’m here for you if you need me” – leaving the onus on the vulnerable suffering to reach out to seek support. Did we really mean that message of support or did we feel that it was something we ought to do to relieve our conscience of a societally imposed obligation? It’s uncomfortable thinking, hey? Hell, I’m no angel, I’ve been guilty of it too.

But reflecting on this has led me to commit to myself that where I can, I’ll make the special effort to make that phone call or to drop by. No chocolate; no flowers; just me. Being present – showing up. On the days when the only time I come up for air from a frantic day is before 5am or post 10pm (generally accepted as times one oughtn’t ring people) I’ll leave a recorded message on WhatsApp. A meaningful dedication with depth expressing what I need to and offering a practical hand of support (N.B. I’m good at popping over with a macaroni cheese).

It’s my small commitment to making this life as rich and deep with meaningful relationships as I possibly can.

And you?

I’d encourage you to reflect on whether your relationships are as nurtured as you’d like. And anyway, you don’t need to listen to me, I’m just some random person spilling out my thoughts and feelings onto the page and hoping you’re not throwing tomatoes at your screen. But various spiritual texts talk about sharing love, speakers qualified to talk about relationships like Jay Shetty, Brenee Brown, Marisa Peer, even Oprah talk about investing in your relationships, listening to hear; not to respond, and being your authentic self.

They must be on to something… surely?

Photo by Robert Anasch on Unsplash

Autism, Airports and Indians

Autism creates an interesting reaction amongst Indians.

There’s the Fix-Its who’ll say “we’ll find a doctor in India that will have a cure” (because obviously all other doctors pale in comparison), the Spiritualists who say “we’ll pray that it goes away” and the Ostriches that say “he’ll grow out of it / he looks normal / he’s just a typical boy”. I’ve heard it all.

I think the one that probably annoys me the most is when someone who’s spent an hour or so with my son says “he seems fine to me, you’d never know he was autistic”. Telling me that he doesn’t seem autistic trifles my three year battle banging on the doors of medical professionals looking for answers, to the mere wave of a dismissive hand.

Icebergs

They say still waters run deep. Well never has a truer word been said about my son. He can go from playing a boardgame quite merrily, humming A Million Dreams from The Greatest Showman to full on tears, tantrums and rage in about the time it’s taken you to read this sentence. Oh, and it was probably caused by something as predictable and innocuous as landing on a snake during a game of Snakes and Ladders.

The spectrum in autism spectrum disorder is so apt; today a meltdown could be caused by his brother stepping on a Lego model by mistake when yesterday it was shrugged off. Or me climbing the stairs ahead of him making me the ‘winner’ when normally he’s running up them oblivious to who’s around.

Suffice to say that everyday is an adventure where we learn new things about him, what he likes, dislikes, sets him off or creates anxiety. A few years of this has enabled me to tune my antennae to look for ways to help him be as comfortable as possible wherever we are.

Being autism-travel-savvy

After a few painful travel experiences involving queuing, lots of frustration and my head teetering on the brink of explosion, I’ve learnt to scout out the facilities at every place we travel to and from to minimise the anxiety and bouts of infuriation – for all of us.

When we recently travelled from Heathrow, I was so impressed at the care we received to help us have a smoother journey, from wearing a lanyard as a cue that we needed a bit of extra help and prompting staff to offer it, the border staff who took us straight to the passport checking desks and the stewards that let us board early so we could settle our son.

Where’s his father?

So it was quite a contrast when I rang the airline (who shall remain nameless – being sued isn’t that appealing) ahead of our departure to see what facilities were available upon landing. I explained what triggers can lead to my son’s meltdowns and what facilities I’d experienced previously to give them an idea of what I was enquiring about. I received this response: “but isn’t his father with him?”. I paused. Maybe I didn’t explain my question clearly enough. I tried again. I slowly explained who was travelling, my son’s condition and what can help us have a smoother journey. I was again met with:

Operator: “but ma’am, you just said his father was there right?”

Me: “Err, yes”

Operator: “then can’t the father deal with him?”

I gleaned a few insights from these comments. This operator knew as much about autism as I do about the diet of the Lappet Faced Vulture (don’t scratch your head; the answer really is zilch). He also harboured a somewhat archaic and paternalistic outlook that the ‘man’ of the family could surely save the day and deal with any of his son’s issues (I’m only the mother, pah! In his eyes I probably shouldn’t even be making the call to the airline, far too official for my rank). This airline evidently hadn’t rolled out any hidden disability awareness training for its staff (I also think the general customer service training is questionable…). But I don’t blame the operator.

Ignorance is no defence but equally, education about hidden disabilities is our collective responsibility if we want to create an understanding and tolerant society.

Rise up

In the Indian community, we don’t talk about problems with our children or the difficulties we have raising them. We love to shout about our children getting into the best schools or being inaugurated into one of the holy trinity professions (doctors, lawyers and accountants) but we won’t say how hurt we feel if they’re excluded from school or in any sort of trouble.

There’s a palpable fear of seeking advice out of shame that we will be judged as being inadequate parents.

This cloud that hangs upon our community is serving no-one. Not the child who could be missing out on support and resources they’re entitled to nor the parents whose mental wellbeing is at risk keeping up this Little House on the Prairie charade of perfect family life whilst secretly imploding within.

Hello

Well I’m calling it out.

Yes, I have an autistic son and yes, it’s incredibly challenging. There are days when I have to scream because every single request is met with protests, tears, backchat and foot stamping – and it might only be 8:00am. The other day in all the din I told myself to go to my happy place – but I couldn’t even remember where it was because I didn’t have a second’s peace to collect my thoughts when the diatribe I was being subjected to was just so loud.

Yes, there are times when we eat out that I want to shrink away because he won’t stop pouring the salt, waving the knife or the wine glass or anything else on the table, simultaneously making boisterous noises, whilst the family on the next table eat in peace stopping occasionally to quip with their children about the day’s adventures. Seeing what ‘normal’ family life could be like can feel like the sharp sting of a needle.

Yes, playdates are anything but fun for me; I spend the entire time checking he’s emotionally sound, fearful that an innocent push or shove from another child might lead to a crying, foot stamping meltdown that will take the best part of 40 minutes to recover from.

Pride

But in every challenging moment I have with him, I can draw from an abundance of times that he’s made my heart swell with pride and made me feel so grateful to be his mother.

His eyes see what the rest of us miss. We turn a door handle and walk through a door. He stops to observe the mechanism within the door and the effect of the turning on it. He identifies the scents of flowers. He can create stories on the spot with a theme, purposeful characters and structure whilst simultaneously acting out the parts. He can recall details from two years ago and link them to something that happened today (the memory thing is usually my undoing because he never forgets what I’ve promised him (usually chocolate) as a last resort to getting something done).

And I challenge anyone to beat him at a game of eye spy.

Foundations

My husband and I might be the foundation of our little family but no house was built on foundations alone. You need walls and a roof. For a long time the perfectionist in me said I could cope with anything life threw at me, alone (see my previous post on Handling Grief). It took me a long time to say ‘I need help’. The people around me had no idea because I’d mastered my Little House on the Prairie charade but when I reached out, sure enough, many hands outstretched to grab them. These pillars and roof safeguarded the foundations.

Education

I explained to my extended family what autism was and how it affects my son – and me. Now when they call, I can freely say if I’m having a good day or not, have a rant about how the incessant form filling for support for my son feels like I’m banging my head repeatedly against a brick wall or how tired I am because he wouldn’t sleep alone last night. The conversations I love are the ones where I can say he’s had amazing feedback on his concentration in class or how well he played a board game with his peers. The point is that I can just be me. No shoving things under the carpet or walking around with a painted smile on my face out of fear of judgement.

Yes, I have a son who’s autistic.

Yes, he’s different.

And yes, I’m going to keep talking about it until such time as the sense of awkwardness around the subject no longer exists.

photo by Alexander Hafemann on Unsplash.com

 

Handling Grief

Cancer

When I was 22, I stopped my Masters degree to became a full time carer for my terminally ill mum; she had cancer. She’d first been diagnosed at the age of 41 and had chemotherapy and radiotherapy which succeeded – together with an iron determination – in keeping it in remission for around 12 years. Like the world’s most toxic boomerang, it returned with a vengeance twice more in less than two years and the third time it ultimately defeated her. She was 54.

If I reflect on her last moments, I can remember with a clarity of vision far superior than any curved TV, holding her hand and hearing her breaths slowly being further and further apart whilst my heart raced faster and faster at the truth whose light was blinding but to which I refused to open my eyes and acknowledge. And then she left – finally released from the tortuous prison of physical pain to a world, I choose to believe, of spiritual serenity and every freedom imaginable.

So as mum’s physical life ended, that’s when the next chapter of my own, began.

I couldn’t cook, drive, hadn’t ever paid a bill or run a household before. But in the wake of the trail left by the unwanted boomerang here was its gift to me. I’m the eldest of three siblings; at the time, one was at university and the other was two months away from his GCSE exams. My father is a traditional Gujarati man (think dhal, bath, shak, rotli* most nights, Indian TV series and cricket and you’ll get the idea). So I stepped up; not like the steps you use at a circuit class, I mean I stepped up (imagine the furthest your right leg can reach on a staircase whilst your left foot is rooted to the bottom step, and you’ll get an idea of what I’m talking about).

Wonky chappatis

I learned to cook (the rotlis* resembled a politically incorrect and geographically questionable world atlas but were edible nonetheless), took driving lessons, kept my home in order, supported my siblings through their exams with innumerable pick ups and drop offs to the middle one’s halls of residence and the younger one’s exam sittings, took over the administration of my dad’s business and resumed my Masters degree. I was doing great; all systems going simultaneously and everything in order. I mean who needs a break when you’re functioning on permanent autopilot mode?

Smelling the coffee

I was living a lie and the worst thing was that I was both the perpetrator and the victim of it. When mum died, in the flick of an emotional switch, the blinkers came on – I was in survival mode and no peripheral emotions or distractions were going to take me off track. So far in life I’d conquered many challenges and this was going to be just another thing that I’d do – successfully of course because there was no alternative. We had to eat, get to places, survive and so much more.

Nearly 20 years later I’ve learned that the way I’d dealt with everything back then was that I hadn’t actually dealt with them.

I prioritised everyone else’s needs not stopping to consider what mine actually were. I thought I was performing a service by being self-effacing and devoting myself to the progress and happiness of those around me. But the truth is that I hadn’t grieved; I denied myself the breathing space to understand what was happening and allow the support network I had around me, in. I was afraid that by showing my vulnerability people would assume I wasn’t coping and would try and take over, threatening the stability of my family.

What a fanciful story I told myself; I had an answer for every scenario, an excuse to hand perpetually as to why I should just keep my head down and keep going. I was a super charged landmine waiting to be triggered before an epic explosion. I’ve learnt this through lots of reflection and coaching conversations that have helped me to grieve for the loss of my mum and for the girl who lost her youth but which has also enriched my relationships and taught me to feature in my own life.

The new ‘me’

Now, I’m much more attuned to my own feelings; if I keep having a recurring thought I know that something’s bothered me and I’ll do something about it. I make time for me without a side dose of guilt that my children will be psychologically damaged because I’ve missed a bath and story time. I’ll sit in a café reading the latest No. 1 Ladies Detective Agency instalment or meet up with friends for a nice meal knowing that by investing in my own well being, I’m best serving those around me because they get a fulfilled and happy mummy, wife, sister, friend and daughter.

I’m no expert; I can’t dispense educated advice on why you behave the way that you do or whether you feature enough in your own life. That’s a path for you to explore when it feels right for you. But from my experience I can say that it’s absolutely worth pausing to reflect on your life experiences, your fears and whether you are your authentic self or wearing the personas you think that others expect to see.

In my case, I didn’t get a handle on my grief and instead let it handle me by shaping how I featured in my relationships. My grief wore a Harry Potter-esque invisibility cloak that was so convincing even I didn’t know it was there. But it was deceptive because it seeped into every aspect of my life and bore itself out in many shapes and forms – it created an inner neediness that led me into destructive relationships, created a feeling of heightened paranoia and sat on my sense of worthiness like an elephant on a daisy craning its neck towards the sun.

Pausa

I’m inviting you to stop, reflect and take stock of your own relationships. How do you feel when you see or speak to the people that matter most to you? Then ask yourself why – is it because you can show up as your no-holds-barred true self or is there a tension within, an inner rod in your back that stiffens and causes you to behave a certain way? If it’s the latter, you can live with it or you can do something about it.

Truth doesn’t have to be painful. Unless it’s your little sister telling you, you look like a demon from an ancient Indian legend because yes, your hair really was that long, black and poofy when blowdried. Maybe she could have kept that one hidden. Or at least introduced me to anti-frizz spray.

Until next time,

Reena

*staple Indian meal of pulses (dhal), rice (bath), a dry vegetable curry (shak) and flatbreads also described as chappatis (rotli)

 

Accepting Life’s Lemons

So, like most working mums, I pretty much work at full throttle 100 percent of the time. A typical day looks a bit like this:

The regime

5:30am – rise and get ready (interspersed with getting kids ready because of course they’re also morning kids – sigh). If it helps, picture me precariously holding an eyeliner brush between my teeth whilst helping #2 take his pyjama top off because apparently only mummy is allowed to do this

6:45am – leave for work and a 1 hour 20 commute where I listen to something inspirational on YouTube (like a talk by Marisa Peer or Brenee Brown for the 20 minutes I’m overground)

8am to 3pm – work with a verve that would give Tim Cook something to think about, eating lunch al desko (anything that can be eaten with one hand) whilst challenging my bladder with the ultimate endurance tests (I just need to respond to this last email before I absolutely have to pee)

3:30pm (because who actually leaves on time) – return commute home and of course normal people don’t travel at this time so there are no ‘fast’ trains or ‘short’ platform exits, no no, it’s the full travel experience the scenic way

4:30pm – home, put the kettle on, quick hugs and hello’s whilst hearing both parties’ representations about how the other has aggrieved them (not easy when they’re doing this simultaneously), express my sympathy and feign understanding at their pain, remind them that they are brothers that actually love each other and there’s no need to quibble over that one toy because there are 999,999 in that pile over there they could choose from

4:45pm – kettle boiled, put (some variety of) pasta on – change into home clothes (the dry cleaning bill would outstrip the cost of my work dresses within a week otherwise)

5:15pm – serve up the kids’ dinner with a dose of ‘why is he eating faster than me, that’s not fair!’ on loop

5:45pm – clear up then upstairs for bath and pyjamas (this bit can take as long as you like because it’s dictated by numerous factors including how long they’re on the loo, if they discover a toy in their room they have to play with straight away, if it’s a hair washing day (God forbid), if the older one decides to practice his gymnastics routine – in his pants or naked; somewhat different to the TV gymnastics most people are familiar with – and of course, mood

7:00pm – upstairs for reading time (again this can vary from one book to five however slow and monotone I make my voice)

8:00pm – If I haven’t accidentally nodded off with one of them (happens a lot) then it’s downstairs to root around in the fridge for the world’s speediest dinner or ingredients to achieve the same end (omelettes and stir-frys are a firm favourite) and I’m usually ably assisted by my darling husband who’s also returned home from saving the world (he’s a hospital based optometrist so only comes home after he’s seen the last patient – not a job you could boil an egg by…)

9:00pm – dinner done, we settle down for some TV time but I’m usually robbed of this and fall asleep a mere 15 minutes into watching a re-run of Gogglebox (why is it so compelling watching others watch TV?!)

The bump in the road

Any of it sound familiar? Well, you can imagine my horror when I recently had to undergo emergency knee surgery (I’m fine, don’t panic) and was told that I wouldn’t be walking properly for up to three months. I was in complete denial with a leg locked at 40 degrees yet still messaging my team from A&E to say I’ll be a “bit late” – that was five weeks ago and I still haven’t made it in.

I was obsessed with getting back to work and managing my household because my body knew no speed other than road runner mode. The thought of being ‘idle’ sent shivers through me; what was I going to do? I’m the matriarch, the one people come to for help when they need looking after; the one who can whip up tasty meals for unexpected guests and can host an impromptu kids party with innumerable activities that could give a vaguely decent entertainer a run for their money.

I was so focused on how I’d return to my crazy normality that I ignored my needs in the here and now.

Well, they say everything happens for a reason (I’m not sure who ‘they‘ are but ‘they’ feature in my life a lot and seem reliably knowledgeable). In my case, my injury provided me with the gift of time and a forced halt to the 1200W blender that is my life.  Instead of focusing on surviving through my convalescence, I used the time to take stock and make some really powerful life changes (more of that to follow in later blogs).

So, I thought I’d share some tips for any similarly highly charged people to avoid derailment if you’re stopped in your tracks for some reason.

My survival 101

1. Accept help.

I know on a normal day you can juggle plates on a scale worthy of the Moscow State Circus but acknowledge that things aren’t ‘normal’ temporarily and so it’s ok to allow your loved ones to cook/clean/tidy/nurse you to recovery – they’re only doing it to reciprocate the love you’ve showered upon them so really, fair’s fair.

2. Make lists.

Writing down the things that you want to get done rather than bottling it up in your head, will make you feel like you’re doing something and then you can either delegate the tasks or if you’re up to it, do them yourself. I took the time to put a bit more effort and research into gifts for the three upcoming kids parties my son would be attending as well as booking a long overdue fridge and oven clean. Amazing what you can do with wi-fi, a credit card and an armchair.

3. Sleep.

Seriously, when did you last have the house to yourself and the freedom to do this guilt-free? My last proper night’s sleep was definitely before my kids were born so nestled with my favourite fluffy pillow and a snuggly blanket, I’ve made my own daytime den in the living room where I can keep Come Dine with Me on low volume whilst I snooze (I can’t reconcile sleeping in my bed during the daytime because it just feels wrong). For the days I need a cat nap but just can’t get to sleep, listening to Dr Wayne Dyer’s Everyday Wisdom on low volume sends me gently to la la land.

4. Read.

Anything – be it trashy magazines, that book you’ve always wanted to read, recipes to finally use up that packet of buckwheat you bought knowing it’s a super grain but having no idea what to actually do with it; just read. When was the last time you read for pleasure or read something which was entirely unconnected to one of the hats you wear (mother, wife, employee), just reading for you. Indulge yourself, you deserve to and you’ll feel great for it.

5. Reflect.

‘Normal’ life is manic, you’re spread so thin across all your roles and responsibilities that you’re practically transparent.

You’re so busy doing all day long that you don’t get the chance to think about simply being.

Here’s your chance. Close your eyes and think about you; what did you aspire to be when you were a child? Did you achieve that? If not, what happened? What excites you? Do you have excitement or passion in your life? What does it look like? If you don’t, can you make some space for it?

Reflection and coaching during my convalescence has helped me to realise that I love to write and whilst my life and career are happily geared towards the service of others, actually writing is also a medium I can use to achieve this. And this is how my blog was born and I’m sitting here writing to you all, sharing my experience from my warm sofa den whilst my leg is bandaged up.

I hope you’ve enjoyed this post. I’d love to hear your thoughts and feel free to share your own survival tips with me!

Until next time.

Photo by Alex Loup on Unsplash

 

New Year, New Start

2019 resolutions

So it’s the start of a new year (well a Hindu one anyway) and like everyone who sees the new year as a time to make resolutions and set some personal goals, this blog is the first step towards achieving one of mine – more about that in a bit.

About me

So who am I and why am I here? The non-existential answer to this (apologies if you were expecting something more abstract) is I’m Reena, a lady within touching distance of her 40th birthday, wife and mother of two amazing boys who loves to dance, wear outrageous lipstick and… write.

Background

I grew up in a traditional Indian household, did well at school and went to a world class university where I studied Law and subsequently became a property lawyer. I got married and moved to suburbia where I spend my time constantly playing catch up as to whether its Christmas Donation Day or some other ‘Day’, ferociously shopping on Amazon Prime for last minute costumes for the kids’ various school ‘things’ (whilst berating myself and affirming with iron resolve that I’ve got a year to prepare for next year’s event), mastering the under 30 minute meal prep time (hint: usually pasta) oh, and actually working for a fantastic not-for-profit organisation helping to restore justice when things have gone a bit awry. Chuck in a bit of socialising with old uni friends and fellow harangued mums and the odd bit of random Bollywood dancing in the kitchen reminding me of my youth, and that’s pretty much me.

A perfect world?

Sounds idyllic doesn’t it? Happy family, good health, means to pay my bills and a job that makes me feel like I’m righting the wrongs of the world. But (there has to be a ‘but’ otherwise this would be as boring as sin) something didn’t feel right. I kept wondering in those rare moments of peace (you can literally count them on your hands post-children) if this was it. Was this my story to be played out until I retired? And how come the more I devoted myself to my children, the more I seemed to detach from me? What’s that all about because I sure didn’t read any sections on this when I was swotting up on night time routines and baby led weaning?

Zoom forward and I met a super amazing coach (happy to share details). In my first call, I said “I’m not feeling right, I think I need to change my job” and rather than shake her head in the “that’s what you think” manner, she helped me explore my childhood ambitions and my life’s journey. Turns out, I’ve always loved reading and writing which is why I’ve gravitated towards careers where I could do this (how did I not know this?!) and I remembered with crystal clear clarity that I’d always wanted to be a journalist. I’d written articles and published my school’s first ever year book but when faced with university choices and eager to please my parents, I took the safer and more perceptively respected route – and I don’t regret that.

But here I am faced with a choice of carrying on my perfectly pleasant – albeit somewhat disorganised – life or dipping my toe into the unknown.

And this is how this blog was born (I had to Google search what the word blog actually meant – it’s a document logged on the web for those dinosaurs like me who still miss ring binders of paper and colourful tags).

so what’s next?

Now enlightened by the knowledge I’ve buried for over 20 years that I love to write, I’ve decided to put fingers to keyboard and see what comes out. Handing in my resignation and declaring that I’m now a self-professed writer would be neither practical financially or emotionally healthy because all I’d do is stress about writing, not write, stress and so on. So I’m going to do this slowly and see what happens, and I’m inviting you to join me on my journey because it’s always better to have someone with you when you’re walking alone in the dark (that must be an ancient proverb or at least a message from the Metropolitan Police). If you can relate to how I’m feeling or have that inkling of “what would happen if I tried…?” then hopefully you’ll take some inspiration from this and please feel free to share your stories with me.

So this is my maiden blog. It’s quite cathartic (and a bit scary) putting myself out there but I also know that whatever happens, I never want to look back on my life and think “what if…?”. Are you with me?

Until next time, bon voyage (and that is literally the extent of my knowledge of French),

Reena