What I’ve learnt from parenting an autistic child during lockdown

So COVID-19 hit us and immediately shut our school. Was this a big deal? Absolutely. My son’s autistic and his sense of security comes from his well established routine; unannounced or unplanned change is an express ticket to Anxiety station with a stop off at Angry Outbursts along the way. All of a sudden he had to absorb and process (amongst many things) that:

  • there was no school
  • mummy and daddy weren’t going to work but still said that they’re working
  • there was a complete U-turn in iPad useage from barely an hour every other day to every day for several hours
  • he could only see his teacher and some classmates via Zoom every couple of weeks for 30 minutes
  • there was no uniform but he still had to do schoolwork

I knew that the change would be challenging for him to process. It’s fine, I thought. I’m working from home, he’ll be happy because mummy will be around more and I’ll just check in on him doing his school work in between conference calls. How challenging could it possibly be having him around whilst I work? After all, there’ll be no pressure to get him up and ready by a certain time, I won’t be rushing out of the door when it’s still dark to get the early train into the City and there’ll be no more tears and pleading for me to stay at home. I laugh now at how disillusioned I was.

If there’s anything I’ve learnt from parenting an autistic child it’s that you’ll always have a nut to crack; you’ll find a way to resolve one challenge and all of a sudden a new one has appeared and brought another for company.

Reflecting on this period of time, it dawned on me how many roles I’d had thrust upon me – roles which were full time jobs of themselves.

being a teacher

I learnt the hard way that however focused he can be, some days would be harder than others. There were days he’d complete a piece of comprehension in 30 minutes, there were other days where it’d take hours. Initially I was adamant that he needed to do at least some learning everyday; I was afraid he’d fall behind and the existing difficulties he had in communicating with his peers and teachers would be exacerbated by a lower sense of self esteem because he’d start to fall behind on his schoolwork too. There were some things I learnt quicker than others, for example, if an answer was incorrect the worst thing I could do was put a ‘X’ next to it – he has a terrible fear of failure and in his world, everything must be correct. I also had to mark things immediately – irrespective of whatever I was doing at the time – because he was so anxious to know how he’d performed despite my assurances that a focused period of concentration was more important than the result it yielded. He dismissed my sentiments as mummy niceness.

The attachment to literal meanings made comprehension questions requiring inference problematic for him. To illustrate, he had no issue finding the answer in the text of how many millions of miles away the moon was from Jupiter. But the question “how would you feel if you were an astronaut travelling to Jupiter for the first time?” completely befuddled him and he couldn’t understand how any reasonable person could answer this without first becoming an astronaut and attempting this mission. And that’s when I’d stop what I was doing because I’d be drawn into a long debate about how we can try and imagine things and it can help broaden our understanding of the world and our feelings.

I also quickly lamented how militant I’d been about iPad usage in the past. Did I think I could raise my kids relying on books and encyclopaedias when in fact digital technology is now the go to for practically every sphere of learning from the traditional maths and english to the creative, making music and designing models? As crazy as it seems, it’s true. The result? My son was so overawed that he’d been handed an iPad without a time restriction that whilst starting a piece of schoolwork, when left to his own devices, I’d find him playing games, watching music videos on YouTube and randomly scrolling in frantic bursts just in case mummy remembered the iPad usage rules and quickly yanked it away from him. The learning for me? Some days he’ll learn, other days not so much and there’s no point pushing it because I want him to love learning. I quickly shifted gears and had to create new rules overnight (his world is very rule based; it gives him a sense of security and defines the boundaries). So on those days when the classwork was on the iPad, it would be handed to him with some set rules (sites he could go on, time limits and that I was allowed to seek updates on what he was working on without retaliation that I was being overbearing) and this way, we managed to reach a happy medium most of the time.

being an employee

So how did he take to me home working? Pretty much like a child given their favourite toy but having it locked in a glass cabinet out of reach. He resented me being on conference calls such that he’d deliberately put the volume up on the television or come and stand before me with a face like thunder, arms folded and eyebrows furrowed telling me quite clearly how he was feeling. He struggled to understand the concept of home working; I’m either at work or at home – how could I be doing my work whilst being at home? And so, whether I was on a video call or trying to write, being physically present to him meant that I was accessible to him (however many conversations we had where he said he understood that this wasn’t actually the case).

This led to a feeling of inadequacy at work as the constant interruptions meant I struggled to keep up with things. Every Monday, I’d dread the discussion of what I’d accomplished the previous week and despite surface acknowledgement of my home situation, the expectations remained the same. I realised that when citing my accomplishments to my manager, this didn’t extend to ensuring I went to bed early because my son woke me up twice the previous night or massively mitigating a meltdown because I was able to intervene swiftly and find his missing Lego piece just before the entire model was crushed in rage. I was expected to absorb a larger team and get them engaged and mobilised, deliver on targets and remain a source of consultation and support for others against a backdrop of an environment wholly unsuitable for executing my various responsibilities. And I don’t blame my son for this nor for repeatedly walking in whilst I was in a video conference because actually, this is his home and I’m in his space (literally – my desk is in an alcove adjacent to his toy/activity shelves).

For the first few months, stress was the standard start to the day. I’d make plans with him the day before as to which activities he’d like to do so that I could start my working day more fluidly and calmly. But then tomorrow would come and when presented with the same activities he’d chosen the previous day, he’d be indecisive and non-committal, holding my attention at gunpoint as I stood there waiting for the ‘yes’ which would permit me to set up the activity, all the while feeling my anxiety rising as the minutes ticked on that I needed to log on or someone was awaiting my call.

I quickly had to adapt from drowning out general office hubbub to drowning out noise from the iPad, TV or piano because working in another room simply wasn’t an option for me; he’s afraid of being alone and needs me or a familiar adult nearby to reassure him. He won’t even go upstairs alone. This meant that any deep work – work requiring critical thinking such as drafting documents – needed to be completed at unsociable hours when the children were sleeping; sometimes that was 4:30am, other times it could be at 10pm.

being a parent

I thought lockdown would bring with it plentiful opportunities to be a more conscious and mindful parent. After all, being at home meant that surely my time with the children would be less transactional and military in schedule. A change from: get home, prepare meal, bathe children, clean kitchen, bedtime stories interspersed with temper tantrums and protests that they’re not tired then trudging downstairs at 8:30pm to greet my husband and prepare dinner together. In many ways it did; I loved squeezing in a quick puzzle with my youngest before departure for nursery. But I was surprised to be on the receiving end of frustration, anger, backchat and attitude from my eldest. I figured he had what he wanted with me being around more so he’d be happier, no? I battled with how to respond to the seemingly random outbursts. On the one hand, I wondered whether he was struggling emotionally with all the change and whether I should just let it go or whether I should attempt to correct his behaviour and seek an apology? If I let it go, would that mean I’m lowering my parenting guard so he gets the signal to run roughshod over any engagement techniques I employ with him? Will this undo all the work we’ve put in to setting boundaries in our home with consequences that follow? This became a daily dilemma and source of several conversations with my husband.

I noticed my son’s fuse was shorter too. He often talks to himself as he’s doing an activity such as playing K’nex or Lego and I found I was in a constant state of heightened alertness, listening out for cues of distress or frustration. He’ll say things like “where’s this bit supposed to go?” and then “oh, there you are” when he finds it. Other times, if a piece isn’t fitting, the tone of the question becomes more strained “where is that bit supposed to go?”. Cue me with an innocuous “can I help with anything?” which usually brings things back on track. Sometimes I got there quick enough to intervene; other times not so by which time his hard work would be in tatters as he’d thrown his half built structure against the wall in rage.

I quickly had to learn to resist the urge to praise or acknowledge his efforts and periods of concentration because as soon as I’d do so, he considered this an invitation to come to my desk and tell me everything about his latest construction, i.e. for a Lego spaceship, what weapons it had, what speed it travelled, what powers and fuel sources it had and more. It would feel like all my efforts to encourage a bit of independence were thwarted and the reset button on the task, what he needed to do, that I’m working and needed some quiet time, all had to be reset.

It wasn’t just at home either.

We were fortunate that because of his care plan, my son was able to attend school who were providing some respite care. This wasn’t without challenge (different teachers, different children, different structure to the day basically, change all over the shop). Some days were relatively uneventful and others seemed a (relative) roaring success – and then there were days when I was called to collect him having only returned home under an hour ago.

On one occasion, he threw some sticks and twigs collected for a nature activity later that day and one of them hit a child in the head. When I probed what prompted this, it turned out that the online learning portal was taking time to load in the ICT suite and he got frustrated with this. It was so difficult to know how to react to this but I looked to how I was coping and although outwardly things seemed to be working at a functional level, inwardly I felt a persistent anxiety of the unknown; what would the virus bring, would my family be ok, what will ‘normal’ life look like afterwards? And so, isn’t it possible that my son was experiencing something similar but unable to articulate it? He was reticent to explain what he was feeling so where my gut reaction was to chastise him perhaps because I had to leave a conference abruptly to collect him, I knew this was serving no-one and instead, I needed to try and get into his world and feel how things were going for him. Cue lots of conversations and lots of levelling with him, i.e. “I need you to help me understand what happened today so I can help you”. Sometimes it seemed to work and he opened up about his feelings, other times I was met with eye rolling and the most I’d get out of him was “are you finished lecturing me yet?”. Sometimes it felt like there was a glimmer of light we were travelling towards through our conversation; other times, the sky was so dense with clouds and mist, I couldn’t even see the way.

being an advocate

As I mentioned, my son has a care plan which means he obtains funding from the local authority for one to one teaching support at school. It’s invaluable on so many levels – he has someone who is able to facilitate his learning at his pace, knows when to divert him when he’s been emotionally triggered and the other children also get to learn without disruption. Every year my son’s plan needs to be reviewed formally and any changes recorded and submitted to the local authority. If I’m honest, I find completing the plethora of forms about my son’s autism hugely depressing.

The forms are genuinely a means to secure support for him but when you’re writing point after point about your child’s difficulties and setting milestones most parents of neurotypical children would see as unremarkable and part of usual child development, it does make me feel low and stokes my inner fears of his longer term prognosis.

And so, amongst lockdown, home schooling and juggling work, along came my first annual review of the care plan. Despite assurances from the school that they could see no reason why the plan would need to be removed because my son clearly required and benefitted from the support he was given, there remained a fear latent within me that the process wouldn’t ‘see’ him; that somehow a case may be made that he no longer required it. This may seem crazy but when you see your child learning and growing, for me at least, I can’t help feeling afraid that people might think his autism had somehow – gone. And I saw this annual review as my opportunity and duty to advocate for him; to explain what he needed, which challenges he’d overcome and which new ones has arrived. I treated the form like a brief to counsel in a groundbreaking national court case; leaving no detail spared and addressing every objective set out in the initial care plan. Over several evenings, I reviewed all the documentation since his diagnosis again, researched how to respond to the annual review and our legal rights (the plan is a legally binding document) then took a day off from work to draft my section of the plan, completing it at around 1am.

To the unsuspecting reader this may sound like overkill but I’ve spoken to many autism parents and they’ve been through very similar emotional rollercoasters at the time of their child’s annual review too.

So I drafted the form. Then came the meeting with the key professionals involved in my son’s care. I updated my section of the form again after that meeting to capture some more of what we discussed. And then I submitted it to the school and left it in the hands of the Gods (well, the local authority actually). At some point this term, I should receive its response but at least I know that in representing my son’s interests, I left no stone unturned. Hopefully we’ll be ok. At least until next year’s annual review.

what about me?

So with all these plates spinning, what about the one entitled ‘Me’?

Well, I used to have a daily three hour round commute; it was the one thing I always wished I could change so that I could see my children at breakfast time, not have to rise at 5am everyday and not leave the house in a frantic state every morning. Lockdown seemed to have granted my wish but funny isn’t it, how the grass always seems greener but often actually isn’t?

I used to use my commute to catch up with emails, read articles, draft blog posts and listen to podcasts to nourish my soul. It was my time. In comparison, I was now always at home, that commute time invisibly swallowed up in attending to the kids and any attempt to multitask such as listening to a podcast whilst washing up or folding laundry, would be interrupted by “who are you talking to mummy?”; “I’m hungry”; “this is boring, can I watch Peppa Pig on your phone?” or drowned out by noise from the TV/fighting/games that involve shrieking.

I started to feel guilty about wanting some time to myself because surely it’s every working mother’s dream to be around her kids more, no? Even worse, I started to resent my husband who is an NHS keyworker so was at work everyday. I resented that he got to go to a different environment, meet his colleagues and do something so valuable as serve members of the public at a time of global crisis. Even though I’d say a silent prayer for his safety every morning as he left the house, at times I wished I could swap places with him even for just a day so I could get a break. How crazy is that; that I’d be prepared to catch the Corona Virus just for a bit of peace?!

When these thoughts started to unhinge me, I realised I needed to make time for me, however challenging that was. I needed physical space and mental quietude to nourish myself so I decided to start going for a walk. Not to burn calories. Not to plan the next day’s activities. Just to be still and alone. Most of the time this went well, but I once returned from a 25 minute walk to a card made my by eldest son decorated with rainbows, hearts and flowers (all my favourite things) which said: “I missed you so much when you went for your walk; I’m so glad you’re home”. My heartstrings were pulled within an inch of their life but I knew it was written from a place of love and security and in order to keep being that source for them, I absolutely had to keep my own energy levels, mental wellbeing and inner self topped up too.

the highs?

This piece isn’t intended to be a downer; I just think it’s really important that the experience of people like me who are parents, carers, employees and more is shared – because if you can see what I’m going through, it may create some valuable considerations or conversation starters for when you next talk to a friend, colleague or employee who’s been juggling things during this unprecedented situation.

And yes, there have been some highs. I’ve loved having breakfast with my boys. I love the creations from junk modelling we’ve made and the baking too (even if I’m finding rainbow sprinkles in every nook and cranny of my kitchen for days afterwards). I love that I can eat dinner with them which is generally a pleasure except when they’re challenging each other with who can put the most blueberries in their mouth. I love that when either of them stand with their arms wide open and simply say “cuddle” at multiple times of the day, I’m able to oblige.

I’ve learnt lots from being on lockdown. The grass always seems greener but that’s just fantasy. Instead of wishing for things to change maybe your job, your commute or your circumstances, I’ve realised that it’s about taking stock of where you are, acknowledging the things you’re happy with and picking one thing you’d like to change – and doing it. In so doing, who cares if others’ grass seems green; we can be content tending our own meadow.

photo credit: Huffpost.com

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

 

 

 

What we can learn from Kipchoge’s Pace Setters

the power of championship

“No human is limited” said Eliud Kipchoge, the Kenyan marathoner, Olympic gold medalist and the first human in history to run 26.2 miles in under two hours. I watched him as he broke through the barrier and I had tears in my eyes. Not because I’m an athlete (by any stretch) but because of the power behind his message. That with confidence and concerted effort, you can achieve anything. As an aspiring writer, his words rained on me like the monsoon on parched lands.

behind every man

I was overwhelmed when I heard that 41 athletes would support Kipchoge to achieve this world record, knowing that the event they were supporting would never really be about them. These weren’t just unknown runners looking for a bit of recognition or air time; they were some of the best distance runners in the world, Olympic and other decorated medallists.

Their sole focus in this task was to help Kipchoge to achieve his.

That is, their success was inextricably linked to and defined by whether Kipchoge would create a new world record or not. Their role was to ensure they executed their V formation meticulously to reduce drag; a single second’s delay could impact the final result. They would have trained for months, probably missing other athletics competitions and opportunities as they did so. But they did it – successfully. Whilst people may not immediately think of them, there is no question that they were essential contributors to creating world athletic history on 12 October 2019.

are you a pace setter?

Watching them reminded me of several articles I’ve read about the importance of championing others – with the often unexpected result of some personal success for you. We don’t have to specifically set out to do this or search for opportunities, but if we’re aware of the power of championing others, we’ll be more inclined to do it. I’ll share a recent example with you.

Screen Shot 2019-10-16 at 13.17.52 Mexican tales

In the summer I was in Mexico and had the once in a lifetime opportunity to swim with a whale shark – only I don’t swim well at all. Nevertheless, conscious that I may never get this chance again, I donned my snorkelling gear and life jacket and boarded a speedboat which took over an hour to get to the point in the ocean where the whale sharks congregate to feed. I was instructed to jump off the boat and swim hastily behind the guide who would lead me to a point where I could swim alongside a whale shark. Every possible alarm bell was ringing in my head; what if the vegetarian whale shark upon seeing me today, decided that he’d like to try some meat? What if I bob away with the current and can’t keep up with the guide, ending up somewhere I can’t be found? What if my life jacket deflates? It’s possibly the most counter intuitive thing to do for someone wracked with fear, to jump from a boat and plunge into the ocean – but I did it.

And it was the most horrendous experience of my life.

My heart was racing so fast that I thought it would burst out of my chest, simultaneously I wanted to vomit but needed my snorkelling tube to breathe and whilst I was paddling quickly, I was barely keeping up with my guide in his red wetsuit some feet ahead. I saw the gentle giant that is the whale shark (fortunately it was around 10 ft long so I couldn’t exactly miss it) and was ushered back to the boat where I resigned that this experience wasn’t for me. I relayed this to my husband and said I wouldn’t do my second dive and he could have an extra one instead. He looked at me and knowing me as he does said “you’re one of the strongest people I know; you’ll regret it forever if you don’t go back in”.

solidarity

As I was deliberating what to do and conscious that my name would be called in a matter of minutes, a lady climbed the ladder into the boat, visibly flushed, upset and bordering on hyperventilating. In an attempt to show some solidarity, I said “it’s tough out there isn’t it? Took my breath away too having to keep up”. She replied “I don’t do the sea, swimming pools are fine, I can swim for ages but the sea, no way. I knew it would be difficult but my husband insisted I give it a try because he loves these things but there’s no way I’m going back in; I don’t do the sea”.

I looked at her and responded: “that’s not true. You can’t say you don’t do the sea. You just jumped off a boat in the middle of the ocean and swam alongside a 10 ft sea creature; in fact, I’d say you didn’t just do the sea, you rocked the sea”.

She looked at me and for the first time since she’d returned to the boat, she smiled at the realisation of my words. It was fact, I hadn’t made it up; I’d just pointed out the magnitude of the achievement she’d just accomplished.

lifting others

Why is this relevant?

Because when we champion each other, we grow ourselves.

In the above situation, my husband championed me and I championed the lady. By pointing out her achievement I realised my own in plunging into the ocean despite every instinct telling me not to.

So what happened next? I jumped back in for my second dive, this time consciously switching off the negative internal chat and focusing on the beauty I was surrounded by; the crystalline ocean, the graceful whale sharks, the warmth of the beating sun on my shoulders. It was utterly incredible; I jumped in right next to a whale shark and swam with it, admiring it as we travelled together. I actually started laughing when we were face to face, marvelling at this most extraordinary situation.

It was a truly exhilarating experience and one I’d happily have again.

sisterhood

Selene Kinder* says:

“I wish that more women realised that helping another woman win, cheering her on, praying for her or sharing a resource with her does not take away from the blessings coming to them. In fact, the more you give, the more you receive. Empowering women doesn’t come from selfishness but rather from selflessness”.

Traditional images of masculinity at work subscribe to brutishness, crushing others to get to your goal, the end justifying the means and all that, but as many have attested, it can be lonely at the top if you’ve trodden on everyone around you to get there. Kipchoge’s pace setters defy this image; they were running for someone else’s glory.

Comparatively, women have been depicted for centuries as self sacrificing, subservient and inhibited. We know the tide’s changed and to a degree, it’s a more level playing field with opportunities abound for those that strive, irrespective of gender. But as we collect our baton, it’s important for us to also consciously bring others along with us on our journey so they may follow in our footsteps and eventually take over from us.

can you feel it?

There seems to be a subtle movement underway, bubbling away under our feet so gently we barely know it’s happening. Things are reverting from the complicated to the simple.

We’re moving away from highly processed food to growing our own vegetables.

We’re scheduling our screen time to make way for more wholesome pursuits or to be more present.

We’re stepping out of the whirlwind of commercialism to pause and question what we’re spending our money on and the true meaning of our existence.

We’re realising that true happiness comes not from obtaining but by yielding, in direct proportion.

We’re starting to see each other not as commodities to achieve a decided aim but wholehearted beings, repositories of infinite talent and potential.

mirroring

Coach Emily Madill*, articulates this:

“…When I see the goodness and potential in you, I’m recognizing that it also exists in me. When I champion you, I also champion me – we rise together.”

So it seems that there is something ethereal yet completely practical about using our language and intention to recognise the efforts of those around us, to acknowledge them for it and to champion them in their cause.

We can be a voice that celebrates the victories of others regardless of gender for in doing so, we are retraining our own internal language and behaviour to:

  1. exemplify the qualities and attitude which will ultimately feed our own inner contentment;
  2. not use others’ perceived failures as the basis upon which we measure and extol ourselves and our abilities but instead create a foundation based on knowledge of our true worth;
  3. be a living example of authenticity in thought and action, thus enabling ourselves to feel truly aligned and live our ideal life.

This all may sound pretty deep and arguably intangible, however when we break it down to its simplest form, all it means is that:

♦  we do our thing to the best of our ability; and

♦  we champion those around us who are trying to do theirs.

When we reach our destination, we’ll see that along the way we’ve created our own community of well-wishers whose happiness is genuine and directly drawn from our accomplishments.

Being a pace setter actually seems quite glorious when you see it through this lens. Where do I sign up?

 

Acknowledgements:

photo credits – whale shark: copyright Walt Stearns, https://underwaterjournal.com

Kipchoge and Pace Setters: https://news.sky.com/story/eliud-kipchoge-marathon-star-bidding-to-make-history-with-sub-two-hour-run-11832252

Selene Kinder: https://empoweringwomennow.com

Emily Madill: https://thriveglobal.com/stories/when-women-champion-each-other-they-rise-together/

 

 

 

The Disease of Slander and How to Cure it

Bollywood times

As an Indian Gujarati, I grew up watching Hindi movies depicting stereotypical gender roles and personalities such as: the domineering mother-in-law who believes no woman is good enough for her son; the dutiful daughter-in-law submissive, obedient and never speaking out for her rights; the interfering aunt who makes it her business to know everyone else’s; the son with no real backbone who just wants to be adored by his wife and mothered by his mother; and either the quiet and deferential father-in-law or the father-in-law who rules the household with an iron fist and against whom no-one can speak.

And the typecasts go on.

is TV an influencer?

This isn’t a one woman crusade against the Indian film or TV series industry, however I do believe that given its pseudo worshipped status amongst the Asian community, it has a role to play in how it depicts the various familial characters on screen, and the typical conflict and conspiracies which transpire between the personalities.

In a study of the effect of TV violence on children’s behaviour, Palermo* concluded that: “…it is not the programming per se that creates violence, but that the violent programs may influence negatively those individuals who are already violence-prone…”.

Taking the essence of this, would it not be fair then to say that if you were gossip prone and regularly following those TV series which promote patriarchy, familial infighting and power struggles, then you’re more likely to be negatively influenced and exude those same qualities in your own daily life?

keeping up with the Patels

Growing up, I noticed that in my community there was always a lot of interest in what others were doing; be it comparing one’s station in life or their children’s academic  performance. The effect of this was that others’ successes became the yardstick against which one had to measure up to show that they were equal, good enough or worthy to be in the same company.

Factors for comparison between families could be anything tangible such as money in the bank, property owned, accolades achieved, countries travelled to, parties hosted – if it was measurable, it counted – and was talked about.

The problem with this is that the bar isn’t static; people keep achieving things, buying things, travelling to new places. As such, many of us Asians are constantly striving, never being content with what we’ve achieved and where we are in life, because it doesn’t fare as well compared to some other person in the community.

Growing up, it was rare to see or hear someone simply being happy for another at their success – and leaving it at that. It always became the gauge for the next endeavour.

I recall as a child being unjustifiably chastised that so-and-so’s child had achieved 10 A’s at GCSE and am I really doing enough studying to ensure that I bring home the same results?

Constant comparisons.

About everything.

It was like being in a race – I an unwitting participant – and every time I approached the finish line, it moved.

self-examination

What is it that stops us from simply celebrating another’s success without immediately employing it as a barometer to measure how we’re doing? And why do we look for the negative in every success story – and then talk about that with others?

Blogger Angi* says:

“… When I’m suffering a scarcity in the fulfillment department, seeing others thriving can sometimes create a twinge of jealousy. That’s a subtle tap on the shoulder for me, a reminder that it’s time to search out more purpose in my life.”

GoodTherapy* says:

“People might gossip for a variety of reasons. Sharing negative information about others can be a method some individuals use to feel better about themselves… Sometimes gossiping can also be a way to get attention—knowing something no one else knows about another person can make a person feel important. In some cases, people may engage in gossip in order to feel accepted. If other people in a social group are spreading gossip, it may feel necessary to participate in order to fit in.”

Could it be that inherently, we feel a sense of unworthiness or a lack of purpose in our lives and the only way to reconcile this with ourselves is to look outwardly and bring others down to our miserable soul level? Is this so inextricably weaved into our culture that we don’t know how to function, i.e. how and what to say to people, if we don’t have gossip as a common denominator as the basis of our conversations?

If this is true, then it’s time to take stock and change gears if we want to leave behind us a culture which is all embracing, unified and wholehearted.

that aunty

Growing up, I recall an animated aunt (who doesn’t?) who’d circle the room at weddings  and download exactly what was happening in everyone’s lives; where the kids were studying (and what, after all, media/business/travel studies weren’t proper subjects), how many bedrooms their house had, what holidays they’d been on, extracting every bit of information which could be cooked up into salacious gossip and then redistributed to listening ears.

There was a running (not publicised) joke amongst us that if there was any key announcement to be made such as a birth, death or marriage, one needn’t inform people individually, simply let this aunt know and the news will have spread to all and sundry by nightfall.

Human nature is such that people love to talk about themselves so when my aunt was  providing her undivided attention, people wouldn’t think twice about responding to her intense and persistent questioning.

It was only after she’d left the conversation that they’d realise they’d imparted information their own extended family didn’t yet know and that apart from learning that the aunt’s son was marrying a doctor (“by God, they’re so wealthy; they live in a six bedroom house in Windsor, far out of our humble league”) they hadn’t gleaned anything about her family’s movements.

And then after all the mingling, the well wishing of the bride and groom and goodbyes to everyone who should know that she’s now leaving, she’d get in the car and and before the car exited the car park, the post mortem would start. It would go something like this:

“Did you see Chanchal Masi? She’s walking with a stick now. Her legs must be giving up on her. Anyway, she’s 72 now so she’s had a good life if it all ends tomorrow. God, Bharthi has put on so much weight! She had her baby three years ago so she should have lost it by now. After I had Manisha, I was back in my clothes within six months! And Harsha’s son is going to Oxford university this year. Funny how she was less quick to talk about her other son who was recently cautioned on drugs charges I heard. And that Magan Kaka’s son has bought a villa in Spain. His dad must have left him a good inheritance to suddenly be able to afford that. I remember when he got married, Magan Kaka only gave saris to Kaki’s sisters, no laani* or gifts for anyone else. It’s all people could talk about for ages; doesn’t bother me in the slightest, just what everyone else was saying. I tried to tell them these things aren’t important but you know how people can be…”.

And so on, recounting every last detail of the conversations had and her take on things in a one way diatribe all the way from Birmingham back to London.

who’s gossiping? we’re just sharing information

Those of you from a similar background can possibly identify corresponding members of your own family who resemble my late aunt. In fact, there are some who expect and even consider it endearing when they hear their elders rambling on about others in this fashion.

Some consider it a facet of our community – but I reject this.

Often people engage in this type of talk to feel good about themselves. But this isn’t true contentment; it’s oneupmanship at play and it’s superficial, so is quickly displaced compared to true happiness which yields “the experience of joy, contentment, or positive well-being, combined with a sense that one’s life is good, meaningful, and worthwhile.” (Sonja Lyubomirsky*).

For the Asian community to be a close knit one which our children will want to be a part of, we need to understand that inane and purposeless gossip is mindless and damaging.

We need to demonstrate and inspire our children to commend others’ successes and genuinely be delighted for them without drawing any reflective interpretation on themselves or their own abilities.

Furthermore, we need to teach them to filter out and consciously reject idle chit chat about others. But it starts with us.

all change!

Situations don’t change, people do – through the choices that we make.

We are each the custodians of our culture; we can choose how we react to information and situations – and we can choose to change our emotional responses too. It’s not just me saying this; there is significant commentary from people who’ve studied this topic, about the difference we can make to ourselves and others by reframing how we react to situations.

The incredible writer, speaker and research professor Dr Brené Brown says:

“… A lot of times, we share things that are not ours to share as a way to hot wire connection with a friend, right? …Our closeness is built on talking bad about other people. You know what I call that? Common enemy intimacy.

What we have is not real. The intimacy we have is built on hating the same people, and that’s counterfeit. That’s counterfeit trust….”

By being more mindful when we speak and by consciously rejecting low level conversations about others, we can empower ourselves to  feel healthier emotionally and psychologically as well as role model to those around us – young and old alike – what it means to be truly content and live in a positively charged state.

let’s be practical

“This is all very theoretical, how does this actually work in practice?” I hear you wondering. Here’s one suggestion, if someone starts tattling on about another to you, you can choose to:

  1. change the subject completely
  2. pick out the positives from what they’re saying and focus your discussion on those
  3. be bold enough to say it’s best not to talk about this because it’s nothing to do with you.

the BMW story

Not long back, my dad bumped into a family friend, Hansaben, whilst shopping for Indian groceries; he’d not seen her in about eight years. She and her husband had always been a quiet, salt of the earth couple and he received word that her husband had passed away last year. Hansaben exchanged a few words with my dad and then walked to her silver BMW 1 Series (latest reg) car. When recounting the interaction to me he said: “You should have seen that car, so beautiful and brand new. Bharatbhai must have had some good insurance policies to enable Hansaben to buy a BMW car!”.

Not wanting to instigate a conversation about what possible assets Bharatbhai may or may not have had here and in India, I replied “isn’t it lovely to see that since Bharatbhai’s passing, Hansaben has adapted to being independent and is shopping and managing all the things which he used to do. Well done to her”.

And that was literally the end of the conversation.

Gossip thrives when it has an active audience. But if the conditions aren’t present for it to grow, that is, if there’s no-one to entertain it and give it attention which enables it to spread, it’ll die its death swiftly.

be the change

“When words are both true and kind they can change the world” – Buddha

We’re so conscious about upgrading our technology; we need to ensure that we are also regularly checking in and upgrading ourselves; an internal audit where we question ourselves and our beliefs and check the needle is where we want it to be on our inner compass.

By doing this, we can consciously create a rich and wholesome culture for our children where they are fulfilled and energised by others’ accomplishments and where their own efforts are genuinely championed without worrying about how others may perceive or speak of them.

Now that’s something worth talking about.

 

Acknowledgements:

laani = traditional gifts given to all guests at pre-wedding functions often comprising organza bags of mixed nuts or sweets, something for the home, saris, money or other tokens.

Palermo, G. B. (1995). Adolescent Criminal Behavior — Is TV Violence One of the Culprits? International Journal of Offender Therapy and Comparative Criminology, 39(1), 11–22.

Angi (blogger): http://www.mindfulandmama.com/blog/2017/9/12/when-women-support-each-other-incredible-things-happen

Sonja Lyubomirsky, positive psychology researcher and author of The How of Happiness

Dr Brenè Brown, The Anatomy of Trust, speech transcript available on https://jamesclear.com/great-speeches/the-anatomy-of-trust-by-brene-brown

GoodTherapy: http://www.goodtherapy.org/blog/psychpedia/gossip

photo credit: ‘Gossip at the West Gate’ by cowyeow on http://www.flickr.com/photos/cowyeow/8061307642/in/photostream/

 

“It’s not abuse if he didn’t hit me”

I recently attended a panel discussion where representatives from Women’s Aid and Surviving Economic Abuse [SEA] talked about raising awareness and responding appropriately to economic abuse and coercive control; politically, socially and professionally. SEA have been instrumental in pushing for the concept of financial abuse to be broadened out to include economic abuse – within the overall policy definition of domestic abuse.

The government has responded to this and in January 2019, the draft Domestic Abuse Bill was published aimed at supporting victims and their families and pursuing offenders. The new legislation will specifically include “economic abuse and controlling and manipulative non-physical abuse”. [source: http://www.gov.uk]

what’s financial abuse?

Financial abuse is “a pattern of controlling, threatening and degrading behaviour which restricts a victims’ freedom”. It’s usually experienced alongside other forms of abuse.

“Financial abuse involves a perpetrator using or misusing money which limits and controls their partner’s current and future actions and their freedom of choice. It can include using credit cards without permission, putting contractual obligations in their partner’s name, and gambling with family assets.

Financial abuse can leave women with no money for basic essentials such as food and clothing. It can leave them without access to their own bank accounts, with no access to any independent income and with debts that have been built up by abusive partners set against their names. Even when a survivor has left the home, financial control can still be exerted by the abuser with regard to child maintenance.” [source: http://www.womensaid.org.uk]

and economic abuse?

As well as the above, victims can experience restricted access to things like food, clothing or transport as well as opportunities to upskill themselves. The charity Surviving Economic Abuse [SEA] describes it as:

“Economic abuse is designed to reinforce or create economic instability. In this way it limits women’s choices and ability to access safety. Lack of access to economic resources can result in women staying with abusive men for longer and experiencing more harm as a result.”

relevance to me

Throughout my life, I’ve met many Asian women who are not just compliant but actively and consciously submissive to their husbands out of fear.

They may work but their husbands control the finances and make all key money related decisions.

They sign papers where told without the opportunity to read them or have a conversation about what they’re agreeing to.

They couldn’t tell you whom their mortgage is with or where their savings are kept.

They can go shopping with friends with their husband’s permission – but have no access to funds to buy things for themselves.

Sometimes their husbands aren’t physically violent; never a finger laid on them. But they’re met with spontaneous and erratic verbal vitriol without cause so they never know what to say or when, in case it triggers an explosive response.

Such a woman may not recognise herself as a victim of domestic violence, economic abuse or coercive control – but under the updated legislation, they very much are.

The sad truth is that even if they identify themselves as a victim, for reasons such as keeping the family together, fear of what society will say and a multitude of other shame related explanations, they won’t leave their husbands or speak out for themselves.

We all know such a woman.

In reality, the change in legislation will probably come and go – and they won’t even have heard of it.

We might not be able to help them exit their situation if they don’t want to, but we can be there for them, support them, listen to them, love them.

From attending the forum, hearing about the proposed legislative changes and reflecting on the ladies I’ve met who have experienced different forms of domestic abuse, I was motivated to write this poem:

I Know A Lady

I know a lady…

….who’s afraid to go out in case her husband needs her to do something and she’s not there to comply 

…who’s too embarrassed to speak to the neighbours because they hear her husband shouting and she worries they’re talking in hushed tones about her

…who awaits her instructions each morning as to what meal she is expected to prepare; she can’t volunteer any suggestions

….whose husband is praised by family and friends for his likeable manner but who never utters a word of love or kindness – or even meets the gaze of – his wife

…whose once broad and active social circle has now diminished to passing platitudes on the street because she’s been told not to maintain friendships with “troublemakers” who speak against him

…who is criticised by her husband when she offers to help and accused of deliberately belittling him

…who goes to the supermarket with her husband but isn’t allowed to choose anything

…who didn’t know that there were works starting at her home until she opened the door to the builders one morning

…who has no idea how much her mortgage is or how much money is in the joint bank account

…who relies on money from her children to buy clothes, shoes and food

…who experiences shouting, door slamming and controlling behaviour everyday but will say she’s not an abuse victim because she’s never been hit

…whose inner circle knows the truth about her reality but no-one talks about it

…who experiences physical symptoms of anxiety when she hears his footsteps descending the stairs, afraid of what mood he’ll be in

…who is only allowed to speak when addressed by him directly

…who can’t shake off his influence so even when she’s out, she’s anxious to return home

I knew a lady.

She was incredible.

A reservoir of love – always celebrating your achievements and commiserating your losses.

She’d cook up a feast for 20 in a couple of hours and serve you with the warmest smile.

She gave love in abundance to everyone she met but her heart ached for acknowledgement from her life companion.

She left with a heart full of promise of the places he’d take her and what they might see together.

She longed for the touch of his hand, a softly spoken word or a look of affection. To be included and noticed, to have an opinion that counted.

She had no appetite for material things and she eventually succumbed to emotional starvation.

She believed that God would make it all alright in the end.

Do you know a lady?

what can I do?

If you know of anyone suffering from domestic or economic abuse or is under the control of someone else, please offer to talk about it. You can provide practical support such as referrals to organisations that can help; or take them to a safe place where they can talk and unburden themselves; plan respite trips such as to a meditation class or for a coffee; help them realise their own self-worth by reminding them of what they’ve accomplished; and avoid platitudes such as “everything will be ok, don’t worry” which serves only to tell the victim that you’re uncomfortable talking about the problem.

The reality is that many (especially older) Asian ladies won’t leave their husbands following decades of marriage; they’ve become used to living in an unequal partnership and have grown to be dependent on their abuser husband. And there are many women who simply won’t reach out to organisations offering support because of shame and fear of judgement by the community.

listen

But we can each make a positive difference to the life of someone we know who is a victim of domestic abuse or coercive control. We can offer support and the gift of our time to hear their story.

I was once walking with my two year old son on a cobbled path at night in Africa and concentrating on where I placed my feet so I didn’t fall and take him down with me. He exclaimed “look up mummy!” and I followed his finger to the night sky which was bursting with millions of brightly shining stars. It was utterly magical. I was so consumed by the cracks in the floor that I almost missed the star studded spectacle above my head.

I learnt a valuable lesson that day.

We are one humanity; let’s look up from our lives and see what’s going on around us.

Let’s look after each other.

 

Acknowledgments:

Women’s Aid – https://www.womensaid.org.uk/research-and-publications/dame-project/

Surviving Economic Abuse [SEA] – https://survivingeconomicabuse.org

photo credit: bbc.co.uk

 

Period Dramas: calling out menstruation discrimination

I was chatting with a friend recently and as I often do, I innocuously asked “so what’s on the menu tonight, you cooking or date night?” with a cheeky glint in my eye. “Looks like a takeaway in the living room for me tonight” she replied with a degree of resignation in her voice and releasing an all-too-telling sigh. My senses were tweaked, I knew something was up so I asked “oh, how come?”. “You know, time of the month and all that” she said rolling her eyes.

And then I remembered. For the last 10 years of knowing my friend, I’ve also known her monthly period. Reason being, she lives in a household where her menstrual cycle is a monthly update for everyone. It tells her mother and father in law that progeny has not yet been conceived; it alerts her mother in law that she’s responsible for the family meals for the next week and gives notice to her four brothers in law that they can organise a mid-week lads night out with her husband since he’s not sharing a bed with his wife so not a lot else will be going on.

being untouchable

You may be wondering how on earth anyone would be alerted to my friend’s menstrual cycle but she lives in a household where periods are considered ‘dirty’ and so when mother nature pays her a visit, she’s not allowed to go in the kitchen, use the waste bins in her house whether it’s to dispose of a sweet wrapper or yesterday’s contact lenses (yes, even in the dead of winter), touch anyone or share a bed with her husband (there’s a double mattress permanently propped up against the bedroom wall ready for it’s monthly seven day usage).

She’s been married for so long and this situation has played itself out so many times that I can see her initial anger and resentment towards it all has now boiled down to forlorn acceptance of her situation. We’ve talked about her moving to her own place where her periods can become less of a public event but her husband is the eldest son and maintains that it’s his responsibility to look after his ageing parents. And but for the whole period publicity, she actually has a very happy relationship with her rather strict in-laws which is significant because she came from a liberal family where no one knew (or asked) about her periods and life was free and easy – from what she studied, to whom she hung out with – so the transition to this household required concerted adjustment.

reflections

Our chat caused me to reflect on how periods were treated in my own household when I was growing up and for other girls I knew at the time. I remembered one girl whom I went to Gujarati classes with (generally the only exciting activity on the weekends when I was a teenager) who had to leave home every month when she got her period and stay with her aunty. It never made sense to me that if periods were dirty, why would it be ok to sully someone else’s home but not your own?

In my own example, as a family we used to pray together everyday and so when I was on my period, I wasn’t allowed to enter the mandir* for five days after which I’d have to wash my hair and then my access would be reinstated. I was never told what the significance of the hair washing was but I assume it was symbolic of cleansing.

And no-one ever explained to me what the cleansing of hair on my head had to do with what was going on in my uterus.

religion vs. culture

From my experience, I can see a conflict between religion and cultural practices which we just seem to have accepted without question. I say this because in the Hindu religion the feminine aspect is considered holy; Shiva (part of the Trinity) is said to be completed by Shakti; the female aspect. During Navaratri, the three female energies of Laxmi, Saraswati and Durga are worshipped.There are female deities and these are worshipped with the same degree of reverence as the male representations.

In the Asian community a fertile woman is considered to be a blessing because after all, periods reflect the potential to conceive a child. But our present treatment of menstruating women doesn’t reflect this same reverence and respect – and we don’t seem to question this.

old practices, outdated thinking

In an article by Mythri Speaks [mythrispeaks.wordpress.com], the author talks about the ancient reasons why women were secluded from their homes and avoided cooking and eating with others at this time. She says that the reasons were all generally positive and spiritually enhancing but these scientifically Vedic based reasons aren’t the ones we hear today in our community. Instead the words associated with periods are “dirty” and “impure” and serve only to cast out the afflicted female enduring a process created by nature and into which, she didn’t have any input.

o great man!

We really need to question what message about our culture we’re delivering to our children; in many cases, are we even providing a culture based explanation for this treatment or are we just telling our daughters that they’re dirty? Whilst it may be rooted in ancient culture or historical practices, we need to consider the wider impact of this treatment on the self-esteem of our girls, in today’s society. By blindly following anachronistic practices, it seems to me that we’re inadvertently reinforcing gender inequality because men don’t suffer the same ‘dirtiness’ warranting segregation and by default, are the more superior.

shame

We have a duty to empower our daughters but also to educate our sons, fathers in law and other male figures around us not to malign the image and respect they give to women because of a sense of impurity associated with periods. If we don’t correct this, then periods will continue to be synonymous with shame and don’t we already have enough battles with shame without adding more to the pile?

Dr Brene Brown** defines shame as: “the intensely painful feeling that we’re unworthy of love and belonging”. Ultimately, by maintaining practices which reinforce this ‘shame’ feeling in our girls, we’re reinforcing an inner dialogue in them that they are not enough; that they must subscribe to these rituals to maintain their worthiness and place in society and the Asian community.

Brene Brown says if you were to put shame in a petri dish and “douse it with a little secrecy, silence and judgement then it will grow exponentially”. She describes shame as “lethal” and that we’re often “swimming in it” however, she also says that shame cannot survive being spoken about. Therefore, in western society where hygiene is no longer a problem, I think it’s time for us girls to openly question why we’re following these practices and be brave enough to make choices based on what reinforces our self-worth; not choosing to follow something because we’re afraid of the consequences but positively electing to do something because we want to do it.

nurturing the inner, not just the outer

As parents we do a grand job of nurturing our children physically – preparing fresh food, ferrying them to extra curricular classes, clothing and accessorising them and more, but we need to put as much focus and attention on how we’re nurturing the self worth of our girls.

We could take the perspective that we’ll continue with these familiar, age old customs and then allow our girls to choose what they want to follow once they’re married and independent. But this seemingly liberal stance serves only to condition our girls to do things a certain way whilst growing up and then feel guilty or conflicted when the opportunity presents itself to make choices for themselves, i.e. once they’re in their own marital homes.

This leaves women feeling guilty if they don’t follow what their mothers have taught them and quick to assume the blame should anything unforeseen happen in the family as bad luck brought on by their violation of the cultural ‘rules’.

Shame, shame and a dollop of more shame.

choosing authenticity

As parents and carers we get to choose how we parent our children – and it’s ok to change track midway if after we look inwards and ask questions of our behaviour we realise something feels counter intuitive.

Another friend’s mother in law knows when she’s on her period because after marriage she lived with her for a while. Now in her marital home, she does as she pleases and has left all period discrimination and related practices behind. However, every month she’s on guard and ensures during that time that no pans with freshly prepared food are left on the stove and the spare room is made up and looking to be ‘in use’ just in case mother-in-law come over. It’s a monthly charade that’s kept up because like a sentinel, she wanders around the house for a general nose about. I can’t imagine anything more stressful than having to prepare to enact a scene on a monthly basis and my concern is the effect of this wearing of different personas for different audiences leading to us losing sight of our own identity [more about this in “Did you hear about her son?” – Shattering the Stigma around Autism in the Asian Community].

Authenticity is so paramount to our own well being and our self-nourishment – by just being whom we are regardless of the audience – we don’t just value ourselves, we give permission to others to do the same.

beetroots

In another case, a London friend was recently invited to a cousin’s baby shower in Ahemdabad. A week ahead of the event, her dad received a call to ask whether she was likely to be on her period at the time of the event lest she should have to sit outside of the main religious proceedings. Her dad’s cheeks reportedly went an interesting shade of beetroot as he digested what he’d been asked to do – to enquire of his 40 year old daughter for the first time in his life whether she was on her period. So he approached her sister to undertake the reconnaissance and then feed back the reply for him to deliver to said relatives in India. I found the whole episode superficially comical but at it’s core, fundamentally degrading.

I’ve been able to easily relegate my period experiences to the past and not carry them forward into my married life because I’ve married into a family where period discrimination simply isn’t a thing. For a long time, I assumed this was a thing of the past  but from the conversations I’m having with friends and wider, I’ve learnt that this is far from the truth.

Historically, Asian women would have shouldered these rituals and accepted them as a symptom of their gender, but today women are outwardly conforming but feeling inwardly divided about why they’re still subjected to such archaic rituals; they’re afraid to stand up and disagree or even to bring it up as a topic of conversation because of the perception that they’re abandoning their culture and inviting bad luck upon the family.

baaaa!

We need to stop the sheep-like mentality of just doing things because they’ve always been done like that. We also need to stop thinking that whether we do something or not won’t make a difference in the grander scheme of things. In the words of Anita Roddick: “If you don’t believe one person can make a difference, you’ve never been in bed with a mosquito”.

Each one of us has the power to influence and role model and by following period discrimination practices we don’t believe in, we’re not serving anyone wholeheartedly; at best we’re just poor excuses for actors enacting a charade for a non-fee paying, judgement doling audience. Essentially, accessories to a crime against women’s self-worth.

If you don’t believe in it, then it’s time to stop. And the choice is entirely in our hands.

Period.

photo credit: http://www.sbs.com.au

*mandir = shrine room where deities are kept

**Brene Brown talks to Ophrah Winfrey on Super Soul Sundays, the podcast

 

Why your back pocket isn’t as secure as you think: choosing creativity over compliance

hairdressing talk

So I was sitting in the hairdressers recently – the greys in my roots meant I’d started taking on a zebra-esque appearance which required swift attention – and the hairdresser serving the client next to me enquired about her daughter. I observed the following conversation (C is client; H is hairdresser):

C: “She’s doing so well with her acting; in fact, today she has another audition to be in a film and there’s only a couple of others in the running. She’s been acting and dancing… she just loves it and she’s really doing well”.

H: “Ah how lovely- you must be so proud! It sounds like she’s going to be a star. Does she want a career in acting?”

C: “Oh yes, she talks about it all the time. And I don’t mind her trying it out but I’ve told her she needs to stop for the next 3 years and complete an academic degree in something so she has something in her back pocket in case it doesn’t work out”

say what now?

When I heard that last sentence it took all of my energy not to turn around and say “what are you doing?!”. Here’s a girl who’s clearly talented and you’re telling her to cut her creativity and success mid-flow and park her ambitions to complete a degree in anything academic just so she has something to “fall back” on? Where would that leave her acting career in three years time and how is she supposed to switch her attention to something “academic” if she’s not persuaded that it’s going to serve her future ambitions?

And even if she does complete a degree and then pursues acting, the fact that she hasn’t utilised her degree or gained any practical experience might make her qualifications effectively redundant if there’s no connection between her qualified subject and her acting. I’ve experienced enough rejection from recruiters to know they can smell commitment from beyond your LinkedIn profile – try explaining that you’ve completed an International Relations degree and then trained as an actor for a few years but really all your heart ever wanted was a job at the UN or Foreign Office.

let’s talk (on my terms though)

I wondered whether the mum had entertained thoughts of a year out, a part time degree or a vocational qualification perhaps for her daughter? Or better still, allowing her the freedom to express her creativity and then revisiting a return to academia at some point in the future. I pondered if it had been a mutually agreed two way conversation or whether the mum thought she was actually being very generous, accommodating and even forward thinking, by letting her daughter have the option of going back to acting after her academic degree had been completed.

Because I (a) wasn’t supposed to be listening and (b) thought if I said something and it wasn’t received well the next two hours would be rather painful and awkward, I kept silent. Maybe I oughtn’t have. I’m something of a reflector so making spontaneous decisions like whether to intervene or not, doesn’t come naturally to me and I replay scenarios over and over in my mind before I often actually decide anything.

what’s actually going on here?

But I did reflect on it and the possible motivations and mindset of this lady.

It was abundantly clear that she loved her daughter and wanted her to be successful – in whatever made her happy. But to me it seemed that there was a fear which perhaps unwittingly was driving her decision making.

In the Asian community we place great pride in academics. Perhaps it’s because as the children of migrant families we’ve been able to establish ourselves, access education and create opportunities which otherwise may not have been available. And as beneficiaries of this we consider academic achievements as the hallmark of success.

I’ve seen the hardships of my own parents in establishing themselves in this country and the tenacity and resilience they’ve shown, to be able to provide opportunities for me and my siblings, is both laudable and inspiring.

But the landscape of success for our children doesn’t have to be confined to academic prowess.

looking within

What if we asked our children to look inwards, identify the skills which come naturally to them and encourage them to pursue what they’re passionate about? From hairdressing to fashion design to engineering and computer programming – if we look closely at the people whose names are synonymous with success we’ll see a combination of talent, persistence and truck loads of passion. These people don’t work to live; it’s not even considered work for them – they are living their passion everyday which is what gives them the edge over everyone else in their field.

Steven Pressfield talks about each of us being born with the most unique identity and nothing – however powerful – can change it. In his book The War of Art, he postulates upon our existence:

“We come into this world with a specific, personal destiny. We have a job to do, a calling to enact, a self to become. We are who we are from the cradle, and we’re stuck with it.

Our job in this lifetime is not to shape ourselves into some ideal we imagine we ought to be, but to find out who we already are and become it.

If we were born to paint, it’s our job to become a painter. If we were born to raise and nurture children, it’s our job to become a mother. If we were born to overthrow the order of ignorance and injustice of the world, it’s our job to realise it and get down to business”.

If it’s sounding a bit deep, it’s because it probably is. I love the idea that each of us is so incredibly unique holding an abundance of talent which isn’t replicated in a single other body in this universe. And yet, culture and societal norms unwittingly lead us to shoehorn our children down a path which might not serve their true calling on this earth.

my journey

Taking my own example, I always loved to write. I recall writing an essay until 3am at the age of 12 because I simply couldn’t stop riding the buzz of words flowing from my brain to my finger tips. I created my school’s first ever year book at the age of 14. I took photos of every single girl in my year group (it was a girl’s school), interviewed teachers, procured quotes from pupils and raided the art submissions for the past year to create a collaged outer cover. I had no experience of putting a publication together – but I did it. There was a fire in my belly and it came so naturally to me.

And then I got good grades and was pondering what path to take. I wanted to become a journalist but I had no idea how to go about this and had unsuccessfully approached many newspapers for work experience only to be told ‘no’. My careers officer at college produced a compatibility report having asked me some basic questions about things I was doing well at. The report recommended a career in law amongst other humanities based jobs which I now can’t recall – but journalism wasn’t on there. Added to that, family and friends started to ask which illustrious profession I was going to pursue. It felt like such a burdensome question to answer – that once I’d declared my chosen path that was it; I’d be wedded to that career for life. There was lots of encouragement to be a lawyer and the seeming financial incentives – having come from a thrifty background – made it attractive.

So that’s the path I took.

to law or not to law

I won’t say I didn’t enjoy it, I did enjoy parts of it – I loved research, writing essays and I made some lifelong friends. But I didn’t ever feel complete or aligned from within. I never felt I was an excellent lawyer; I was a hard worker and certainly competent and thorough but I didn’t have the flair and exuberance as some of my colleagues who loved to debate points of law until the small hours, got excited about tax issues and were giddy with excitement when the Human Rights Act was about to become ratified into UK law.

I followed the path; I became a lawyer and I felt that now this was my career, any deviance from this into another career was a big no-no. I didn’t just tell myself this story; I contacted several organisations about policy or other public sector work and the feedback was always that my experience was only legal and this is what I was best suited to. Thankfully, the employment industry has since evolved to take better account of transferable skills.

square peg, round hole

But this feedback and feeling that I was destined for a life as a lawyer and nothing else, left me feeling inadequate and dented my self esteem because it seemed to me that I had to work so much harder than my peers to achieve the same results they did. It didn’t occur to me that perhaps I wasn’t in a job which I felt aligned to and through which I could achieve my life’s purpose.

Fast forward and I ended up working for a public sector organisation when the markets crashed and every property lawyer I knew was clinging on to their job. It was a refreshing change where I learnt more about myself; I loved to write, serve people through my work and feel like I was making a difference – lots of continuities from being a lawyer but I felt better about this job and could feel some inner alignment coming through – but not completely.

Finally, following my operation [see Accepting Life’s Lemons] I took up writing. Now I can see how everything I’ve ever enjoyed has led me to this moment; the first year book, the numerous articles for the college magazine, the dissertations and legal arguments – the thread which bound everything together was my love of words and writing. So here I am, I want to write and to serve through my writing – I’m doing it and it feels good. I’m feeling pretty aligned right now which is a feeling that’s quite incredible. Sometimes I don’t know what I’ll write about but I’ll sit down and it all flows out – it isn’t dragged out or jostled along – I feel like a mechanism from which my inner creativity pours.

setting up our children

Maybe on some level as Asian parents we think that if we’ve put our children through university then in the eyes of society, we’ve properly discharged our parental duties. Forcing our children to study an academic qualification just to satisfy a checklist which we’ve had no input into is both an insult to the creativity of our children and is potentially damaging for their long term outcomes, including their mental health and sense of fulfilment.

If we accept that we all have at least one gifted talent, then forcing our child to compete with others for whom the area is one of interest, passion and purpose is setting them up to fail – because they’ll never have the edge those children have; the edge that comes from working alongside and harnessing your innate talent – the edge that makes work hardly feel like work.

are you excited?

So I’d invite you to ask yourself and encourage your children to do the same; what makes you excited? What things do you do that come so naturally to you you don’t even have to think about it. Maybe you’ve always loved creating fusion food or drawing still life pictures; maybe you’re into animal welfare, writing poetry, applying make-up, creating handicrafts or creating a travel blog – whatever it is, it’s fine if it’s just a hobby and you’re happy with that.

But don’t rule out turning your hobby into something more just because you’re afraid it’s not the “done thing”. In the end, you are harnessing something within you which no-one else in the world can offer. Aren’t you even a little tempted to see the impact your talent could have on the world? Don’t wait for society to tell you to pursue your dreams; society praises results and likes predictability and conformity. If you ask others, they’ll ask why you want to upset the apple cart because presumably things are quite organised in your life (you have a regular income, a loving partner and maybe a kid or two – it’s all quite a pretty picture).

If I had any advice for my younger self it would be this: trust yourself and just try. It might work out, it might not – but you’ll always learn something about yourself from every experience and you can build on this.

“Let go of who you think you’re supposed to be; embrace who you are.”

Brenè Brown

now what?

So if you’re thinking, where do I start? My humble advice is:

  1. Question your purpose.
  2. Carve a way to experiment with what you love, i.e. if you want to write, start a blog. If you like to paint, buy some paint and set aside one hour to just see what happens.
  3. Follow your instincts – how did the activity make you feel? Enjoy it? Then do it again.

It’s said that no-one ever regretted the things in life that they did; only what they didn’t have the courage to try.

Be brave and try; if we come to the world with nothing and leave in equal measure then by definition, you’ve literally nothing to lose.

Photo by jarmoluk on canva.com

 

“Did you hear about her son?” – Shattering the Stigma around Autism in the Asian Community

What is it that makes us Asians so uncomfortable talking about autism?

I’ve found that there’s a lot of misunderstanding – and a general lack of understanding – in the Asian community about hidden disabilities. I remember telling an aunty that my son was autistic and she replied: “There was no such thing in my day; it’s just the concoction of over thinking by western doctors who have nothing better to do. Parents just need to be firmer with their children”. Sound familiar?

I’ve noticed that it’s far easier to discuss physical disabilities with others in the community because they’re more obvious. And people seem more sympathetic and able to reconcile the child’s condition with God’s will – but that’s not the case with hidden disabilities like autism.

Asian ways

Even though we may live in Britain, we’ve kept a lot of our Asian ways for example, through celebrating rites of passage, observing religious days and practices and cooking traditional food. But in other ways, it seems we still need to progress our thinking about the world around us.

I’ve observed that as a community, we place a lot of weight on how others perceive us – and sometimes make counter intuitive choices based on what we think we should be doing.  And talking about having an autistic child ventures into the realms of extreme discomfort because many Asians don’t know what it is, how it manifests and why you need to engineer your life differently around your child compared to others.

Crossroads

But we have a choice; we can seize this opportunity to educate those around us about autism and break down some of the misconceptions about our children. Or we can carry on as normal, telling no-one, putting our children’s behaviour down to simply not listening and contributing to a future where they fail to be understood and are marginalised for not fitting in.

The impact of the choice we make is not to be underestimated. By not talking about our autistic children we create a sense of nervousness and shame around the subject. And so, we show up as introverted and uncomfortable. We tell ourselves stories that people might be judging us behind our backs and perceive our family negatively and that our children’s marriage prospects will be restricted. And because we present laden with all this emotional baggage, we end up attracting negative misconceptions from those around us.

Choosing a different path

I’m not prepared to subscribe to that.

Instead of shying away from my son’s autism, I’ve told everyone in our family what it is and how it affects him. Because of this, people now ask me how we are from a place of genuine concern. However my day’s been, I can be honest and authentic talking about it because by bringing them into the world of autism, I’ve effectively given them permission to ask.

By wearing different personas for the different people we’re meeting, we run the risk of losing touch with whom we really are because we’re so obsessed with ensuring the right persona is in place for the group of people we’re interacting with; whether it’s the aunties at the mandir* or the relatives at a wedding.

By committing to just being you – raw and authentic – you can conserve all of the energy spent trying to be the person you think others want you to be and instead spend it on the person who deserves it most – you.

But, how?

 “Ok but if I’m going to a function and I know my child struggles with big crowds, what am I supposed to do?”. The answer is, whatever it takes so that he’s comfortable and so are you. If that means no Indian clothes, wearing ear defenders, arriving towards the end of a ceremony so that he doesn’t have to hang around for hours with unfamiliar people or asking the host to seat your family somewhere specifically – then so be it. You’d be surprised how accommodating and understanding people can be when we let them into our world and show them how these changes can make such a difference to the experience you and your family have.

Tailoring experiences

Last week, I took my six year old autistic son to a bhajan sathsang* which I’d never before done. I’d attempted to run simple family prayer sessions at home previously and gave up because he just couldn’t sit still and was only interested in touching the bells, idols and the artificial (and real) tealights. Despite that, I thought I’d give this a go. I told the host family I was coming with my autistic son and I’d like a place near the front so he can watch the musicians, to which they happily obliged. My son sat for over an hour attempting to sing the songs and enraptured by the orchestra playing around him. By being open and honest, I created a completely different experience for us.

Great expectations

There’s a lot of expectation in our community of mothers being strong and holding it all together but being the parent of an autistic child is exhausting; anticipating their needs and creating a world around them where they feel comfortable and secure takes a lot of energy. So it’s important that we stand up to the stereotyped Mother India* image and ask for help.

Asking for help isn’t a sign of weakness; it’s a sign of strength because it shows that you’ve identified what you want to achieve and you’re using your resources to make it happen.

If your boss asked you to put a pivot table together urgently, would you bury yourself in online tutorials or ask your Excel proficient colleague for help? We’d utilise the resources around us unashamedly to deliver the task. So why don’t we do this for ourselves?

What do you need?

You can’t pour from an empty cup. It’s important to think about what matters to you and to move things around to make it happen. I need time and quietude to be able to write. But my kids are like bulls in china shops and I don’t want to silence them with movies. Instead, my husband has moved his weekend run from Sunday mornings to Saturday afternoons so he can drop my eldest to drama (whilst toddler naps), go for a run and then collect him. This gives me one and a half hours to write. And I’ve created similar pockets of time across the weekend to dedicate to exercise, writing and self care by asking for support from those around me.

United we stand

There is so much strength to be derived from being part of the Asian community. But unless we’re prepared to be bold and go out there, sharing our experiences and talking openly and proudly about our autistic children, the community won’t move ahead with us and we’ll end up abandoning it as archaic and rigid all because we were afraid of how people might react.

Our children deserve to benefit from India’s rich, cultural heritage as much as any other; let’s pave a path together in the world where they’re embraced and celebrated – just as they are.

 

This piece was written for and published by Anna Kennedy Online – an Autism Awareness Charity

*temple – a Hindu place of worship

* bhajan sathsang – a public gathering at someone’s house where religious songs are sung

*Mother India – 1957 Bollywood movie about “a poverty-stricken village woman who, in the absence of her husband, struggles to raise her sons and survive… Despite her hardships, she sets a goddess-like moral example of an ideal Indian woman”. (source: Wikipedia)

Photo by Kristina Flour on Unsplash

How I learnt to direct the movie of my life

This piece was written for an internal publication at work – it was published in May 2019.

kal-visuals-1104603-unsplash

I read an insightful article on LinkedIn about the importance of women having other strong women in their support network, to bounce ideas off, go to for advice and an honest opinion and pick you up when you’re down.

It got me thinking about my life, Black, Asian and Minority Ethnic (BAME) women more generally and the backgrounds we’ve all come from. Of course we all have our own unique stories to tell, and I’d like to share my own experience with you.

sacrifices

I was the first child on both my mother’s and father’s side that attended an extremely prestigious university and became a lawyer. I was acutely aware of the cultural burden I was carrying on my shoulders to make something of myself and honour the sacrifices my parents had made to get me to this point and beyond; getting up at the crack of dawn to run a shop seven days a week so that we could all have an education without saddling ourselves with debt. My parents worked hard physically so that their children could have a future with more promise and opportunity. But it wasn’t all perfect.

As a BAME woman, there were lots of things I wasn’t taught and which didn’t come naturally. I didn’t know how to walk up to a senior partner and speak with confidence and aplomb about my achievements. I always batted away recognition with statements that underplayed my achievements. I didn’t know how to build a network, what was a network anyway? When you have these social do’s, what are you supposed to walk up to random people and say and why would they want to talk to me anyway? I kept my head down believing that hard work will pay its dividends later in life through promotions etc. I didn’t need to feign interest in what others did on a weekend or be a burden on anyone by asking too many questions.

waiting in the wings

Looking back, I now realise that the place this came from was a lack of acknowledgement of my own self-worth. I never allowed myself to enjoy the journey of learning or work; I was constantly trying to prove myself to my parents, my employers, everyone. I was always taught to strive – and I don’t disagree with ambition – but if you’re never taught to stop and take stock of everything you’ve achieved, your life will become a movie film directed by others; a film where you don’t have a voice.

As a BAME woman, I don’t think my traditional Gujarati culture and home life leant itself to promoting my inner greatness. It was all about academics and actual achievements; not about the nurturing of one’s inner self, promotion of contentedness and finding one’s purpose in life.

building networks

Like many BAME women, I had to balance caring responsibilities with my studies and other roles in the family and community. So what can we do to help each other? I’d say look around you. Are there skills you can see in others that you’d like to develop? Ask them for help; whether it’s mentoring you or a one off chat so you can start building a support system of empowered women around you.

The richness of their personal experiences and cultural heritage make BAME women such incredible and empathetic ambassadors and leaders. I’ve realised that I’m not defined by what I didn’t have growing up but by the paths I’ve chosen to take into the future.

I’m directing this movie. And it’s going to be amazing.

 

Photo by KAL VISUALS on Unsplash

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