Autism, Airports and Indians

Autism creates an interesting reaction amongst Indians.

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

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

Icebergs

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

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

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

Being autism-travel-savvy

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

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

Where’s his father?

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

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

Me: “Err, yes”

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

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

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

Rise up

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

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

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

Hello

Well I’m calling it out.

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

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

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

Pride

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

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

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

Foundations

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

Education

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

Yes, I have a son who’s autistic.

Yes, he’s different.

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

photo by Alexander Hafemann on Unsplash.com

 

Handling Grief

Cancer

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

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

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

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

Wonky chappatis

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

Smelling the coffee

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

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

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

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

The new ‘me’

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

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

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

Pausa

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

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

Until next time,

Reena

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

 

Accepting Life’s Lemons

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

The regime

alex-loup-397220-unsplash

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

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

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

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

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

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

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

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

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

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

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

The bump in the road

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

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

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

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

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

My survival 101

1. Accept help.

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

2. Make lists.

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

3. Sleep.

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

4. Read.

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

5. Reflect.

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

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

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

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

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

Until next time.

Photo by Alex Loup on Unsplash

 

New Year, New Start

2019 resolutions

Reena Anand

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

About me

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

Background

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

A perfect world?

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

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

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

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

so what’s next?

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

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

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

Reena