How my autistic child made me a better communicator

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

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

something’s not right

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

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

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

searching for answers

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

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

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

the prodigal son

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

And then I had another son.

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

realisation

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

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

what’s normal?

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

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

feelings

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

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

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

literal translations

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

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

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

domination

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

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

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

contrasts

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

Ash’s just permanently messy.

broken record syndrome

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

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

Intense, hey?

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

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

my take-away

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

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

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

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

And adopt the existential persona of a cucumber.

There’s not many that can boast of that.

 

Photo by Harshal S. Hirve on Unsplash

*names changed

Don’t cut your nails on a Saturday

To understand the context of this statement let me tell you a bit about me. I’m a Hindu Gujarati. My father was born in the Indian state of Gujarat and was one of six children whilst my mother was from Kenya and one of seven children. Both grew up with every imaginable hardship – financial, hard discipline, emotional starvation – and their marriage was arranged via elders. There was no dating; they simply saw a photo of each other. Hinduism and Gujarati customs were an everyday part of theirs (and my) childhood; certain days were observed as ‘vegetarian’ or ‘semi vegetarian’ (fish but no meat), certain foods were prepared on particular days and I was completely accustomed to hearing what not to do to avoid bad luck.

The language of Gujarati is my mother tongue but I confess that whilst I can speak it, understand it and read a little, unless I’m speaking to someone (usually) elderly, I default to speaking English even when I’m being spoken to in Gujarati.

My parents brought me up to follow many things (including the nail thing on a Saturday   which effectively reduced my weekend opportunity to get my nails done by more than 50% when you take Sunday trading hours into account). It’s only later in life and especially after I’ve had my own children and am more spiritually inquisitive and aware, that I’ve started to question why we say and do certain things in our culture.

walking the tightrope of luck

The beliefs I was taught were a mix of what I would loosely call religious and cultural. Religious practices included praying, going on pilgrimages and observing key festivals whereas cultural practices would include things like:

  • Not putting the household rubbish out after dark because good fortune would leave through the open door
  • Never leaving a shoe or slipper upturned because it attracted bad luck
  • Not washing your hair for the entire nine months of your pregnancy to protect mother and child from infections (dreadlocks anyone?!)
  • Not tapping/waggling your foot because it invited bad luck
  • Eating a tablespoon of natural yoghurt before an exam for optimum performance

And hundreds more practices like this. To this day, I’ve never found a universally accepted reason for the ones I was taught – or even a rational reason at that.

do as you’re told

I was also taught obedience and that parents are the personification of God so you do as you’re told and don’t challenge – which limited the possibility of conversation around why. Add to that the difficulty of reverence to parents who sometimes behaved in ways that were morally questionable and you get a flavour of the emotionally conflicting and stifling aspect of my childhood which was probably an unwitting resemblance of their own.

I’m forever grateful to my parents for the material sacrifices that they made. Like many parents of their generation, they slogged night and day to create a life for their children which would be far enhanced materially and educationally than their own. This was the dream; this is what they lived for. But, being a parent is about so much more than this too.

parenting through fear vs. love

I don’t believe that being a parent in itself qualifies you for reverence and even if you do achieve this from your children, if it’s motivated by fear then the depth of loving feeling won’t necessarily accompany it.

Respect and admiration from your children is earned; it’s not owed.

For me being a parent is an opportunity to demonstrate those qualities which you value and want to see in your own children – truth in speech and action, acceptance, compassion towards others, manners, promotion of self-worth, tolerance – and so much more.

why?

I’ve come to realise that relatability is everything. Unlike my younger self, I encourage my children to enquire and be inquisitive whether it’s about our culture, the world and everything in between.

I want to leave my children the legacy of my culture in such a way that they treasure it and pass it on for generations to come. But I know the way I was taught to follow things won’t fly with them.

Immersive appreciation – not blind obedience – is the only way forward.

For example, I observe the Sheetala Satam ritual. On this day, we don’t use the cooker (so usually eat cold food) and light a diya (sacred lamp) offering prayers to Goddess Sheetala. There are many stories about why this day is observed; some say it’s about protecting children from chickenpox, others say it’s because back in the day, people only had a basic earthen stove and it was an opportunity to thank God for the resources He’d provided for us to survive. I’m not sure which version is correct but the reason I observe it – and tell my children about it – is because it teaches me humility. In not using the cooker all day I’m reminded how fortunate we are to have the food and resources we do and to be thankful for them.

For me, this is the take home message; it’s relatable and whatever the future brings when I’m no longer around, the message of gratitude and humility is everlasting.

my banned womb

I’m also happy to observe this custom because I’m not harming anyone by practising it.

By comparison, I was recently told that I wasn’t allowed to participate in a traditional  Shrimanth ceremony* (baby shower) because seven years ago I’d suffered a miscarriage (more in my blog Don’t say the ‘M’ word). I couldn’t believe that the same people who comforted me with assurances that my unborn child was actually a gift from God fulfilling their last karma** were now using my miscarriage as a reason to exclude me from being present and joining my family on such a happy occasion – and citing our culture as the reason for this. Apparently, even though I’d successfully delivered two healthy children my earlier miscarriage meant I wasn’t considered whole.

This experience made me question what messages and legacies we want to define our culture for generations to come.

To take someone’s past unfortunate experiences and use them against them isn’t just a sure fire way for future generations to reject our culture, it’s an affront to humanity at its core.

I’m not prepared to subscribe to any aspect of my culture which alienates or denigrates people. To me culture means inclusivity, celebration of heritage and strengthening bonds based on the foundations of mutal love, promotion and pride.

I don’t want to shed my culture, I want to celebrate it but I want to define my culture positively and set practices and beliefs which enhance and promote people and their wellbeing – not use it as a tool to divide.

To me, culture is captured by togetherness and servitude. It’s sharing meals and resources, celebrating each other’s successes, offering a hand when life gets tough and observing customs which tighten this thread of humanity between us.

looking ahead

Future generations won’t accept legendary tales or customs which shun members of the community. We live in an age where children want answers backed up by reasoning or the satisfaction of their innate sense of justice fulfilled. My humble advice? Be prepared to be asked questions and don’t be afraid to say you don’t know but you’ll find out. And when you do get an answer to your question about why you do certain things, pause and ask yourself if you agree with the message you’re conveying to your children.

We are the beholders of how we define our culture to our children – we’re not slaves to following things we don’t want to or don’t agree with just because that’s the way it’s always been done.

When we’re at the crossroads we can choose the ignorant path of fear or the illuminated path of education and enquiry.

In Sanskrit the teacher is known as Guru which translates as the remover of darkness/ignorance – we are the primary teachers of our children so let’s use this empowerment to shed practices which harm others and redefine our culture so that it’s exclusively rich in love, acceptance and service to all.

some explanations:

*also popularly known as Godh bharai/Khodo Bharavo which essentially translates as “filling the lap” of the mother-to-be with abundant good wishes for a safe and healthy delivery.

**In Hinduism it’s believed that the cycle of birth and death continues until all past misdeeds have been compensated for through good action thereby enabling a person to merge with God and be truly free of this world.

Photo from post.jagran.com – image shows seven chillies and a lemon often placed outside homes and businesses and believed to ward off evil 

 

 

Don’t say the ‘M’ word

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

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

Fantasies

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

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

Searching

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

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

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

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

Starvation of conversation

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

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

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

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

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

Realisations

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

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

Showing up

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

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

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

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

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

And you?

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

They must be on to something… surely?

Photo by Robert Anasch on Unsplash