Snare Drums and Socks

Autism – Abandoned socks, broken snare drums and other daily trials


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Autism, not Aspergers

Again, it’s been a long time between posts.

 

I have so much to say, often in my mind, subjects and insights that I feel may, just possibly, be beneficial to the greater good of autism awareness – yet my exhaustion very much gets the better of me.

Also, after a lengthy, yet sporadic self-analysis as to why I lack the desire to write for “pleasure”, it occurred to me that my life is so hefty in existential weight, it almost seems flippant to do so, as I am unsure if the levity of our situation can be expressed with a casual blog post, without trivialising the temerity of the overwhelmingness of it all.

Living with autism in your life is like gaining a new sun to which your own personal Earth revolves. Everything I do, everything I witness, is, I’ll be honest, tarnished by autism.

Starting each day between 2 and 4am aside, because this has in fact become an “aside” in my life, as it is very much now just a given I barely sleep each night, and no friend, nor professional seems to be able to grasp the significance of this aspect as I apparently cope with it “too well”; my daughter’s autism is that of the classic form.

Too many times so far, her issues have been dismissed instantly as when I bring her difficulties in to a conversation, as people wrongly understand due to their media-driven ignorance, that my daughter has Aspergers Syndrome.

Autism, in the broader understanding in regards to the general public, means a fancy way of saying Aspergers.

I make note, at this juncture, that of course one and all should indeed not trivialise the daily hurdles met by those with Aspergers and their family and friends, however, when it comes to classic autism, we’re cooking entirely different kettles of fish.

I almost can not fathom a way to start to express the differences between Aspergers and classic autism.

DSCF8141.jpgI can not fathom, and I don’t know if I have the strength of mind nor the time and brevity to do so.

Here, however, is a nice example of how not understanding the difference can cause a few extra issues in one’s already stressful life:

The cat has fleas. I don’t know this yet, as I did de-flea the cat one month ago, yet unbeknownst to me, these are evolved super-fleas we’re dealing with, and as it turns out, they are now immune to the standard, over-the-counter flea killers you’d normally use.

However, my daughter’s body knows there are fleas first – she has an innate desire to either sit on the floor constantly and examine the specs of dust and debris that live there, push her face against the warm, purring body of the cat as he lies in his basket (and sing “Ding-Dong-Bell – Pussy’s in the Well!”), or lie front-down and place stickers all over the laminate flooring.

So, due to her desire to reside so close to the ground, she ends up with flea bites on her ankles. With the flea bites, comes incessant scratching, which draws alarming and somewhat gratuitous amounts of blood.

Hence, I call the doctor.

(Of course, by this point I understand what is the initial cause of the rash, and I would like to add that the flea situation was well-and-truly dealt with!)

Before seeing a doctor face-to-face, I must converse with a stand-in doctor via the phone, and the conversation goes like this:

Mamma Socks : I believe my daughter has flea bites from our cat [I reiterate profusely for them that, out of sheer embarrassment, of course the fleas have been dealt with] – they are on her ankles, and because they’re itchy, she’s scratching them until they bleed.

I can’t tell her to stop scratching them because she has autism, so I was wondering if there’s something you could do to help with the itching, as I think that would alleviate the problem.

Doctor : [tone somewhat dismissive and unapproving] I’m sorry, you say she has autism – why does that mean you can’t stop her from scratching?

Mamma Socks : She’s non-verbal. My daughter doesn’t understand what “stop scratching” means.

Doctor : Oh, I’m sorry, I assumed she was verbal with her autism.

The doctor assumes, instantly and wrongly, that when I say “autism” I mean Aspergers- as children with Aspergers do not generally suffer from extended speech delays, and this is often the reason Aspergers Syndrome is not diagnosed until children are much older.

Now, I’m sure that at this point many parents of fully-verbal children with Aspergers could argue that it may be a task to tell your child exactly why they shouldn’t itch, but when your child is non-verbal, the story is really elevated to another level.

“Don’t” – stop, perhaps, my daughter will understand.

“Scratch” – maybe she knows what I mean by this, but it’s unlikely. I can indeed scratch her and say “scratch” over and over again until she understands the meaning…

However, “don’t scratch” actually means, in typical social understanding: please stop tearing away tiny bits of your skin so that unsightly blood floods from your beautiful, precious legs and leaves you looking like a child that nobody loves: other people don’t like to see blood on people and it makes them scared and alarmed, it’s going to stain your white summer school socks and by scratching your skin, you’re going to make everything so much worse and perpetuate the situation, and even perhaps your unrelenting nail-against-flesh action (nails that were earlier picking up snails from the garden and placing them on the wheeled garden kneeler, so they could go “driving in a car” [thanks Yo Gabba Gabba!]) is going to occur in a skin infection.

However, as you might be able to imagine, if my daughter is going to struggle understanding the basics of the two words “don’t scratch” in their basic, dictionary-definition state, my prosaic social diatribe will mean absolutely zilch to her.

She doesn’t care what you think of the blood streaming down her legs, she doesn’t understand the abstract consequence of what invisible [tiny, ugly – Yo Gabba Gabba!] germs might do to her body, stains are an inconvenience she is blissfully unaware of, she is fearless of almost everything, including blood, as blood is only an indicator of the finality of life force to those whom understand the workings of the human body – her ankles itch and she needs to scratch them – that’s all there is to it.

That is… autism.

There’s no grey area in her understanding of being alive – it’s all instant gratification, it’s all here and now, it’s survival and she is the centre of her own universe.

And, in my tired state, this leaves me at the perfect point to say (just as my daughter awakens crying from supposedly sound-sleep, found slumped reasonless at the top of the staircase, moments before I go to bed) that perhaps she’ll never know, but she has usurped me as the centre of my own universe.

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Still Waking Up

I sometimes have moments of lucidity. I think “have I been dreaming?” My daughter has one of the most profound disabilities there is, but due to the time said disability takes up, I often find I’ve neither the time nor concern for the semantics of the situation.
What is the future for, but worry and strife?
I do not have a future, for I decide not to account for it.
It needn’t exist at this point, because today is already immeasurably uncertain minute-by-minute.
I can not plan an hour ahead, let alone a year or twenty. I could try, but I may cease to function presently if I did so.
There is nothing but now, this second, and all beyond is insignificant or unbearable, and everything before still not yet processed nor accounted for – as the past was my dream and I am still waking up.


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Autism Altruism

I want to give my blog an update, but I am unsure what exactly there is worthy of mentioning at this time.

I’ve been struggling with my perception of humanity over the past year, having found that a large portion of people I meet do not fall in the “intrinsically good” grouping that I always believed to be the case.

I’ve actually found many people, in terms of dealing with my daughter and when seeking help or assistance, to be profoundly selfish.

I actually have recently come to the conclusion that good and bad aside, people are intrinsically selfish.

I regularly question whether my mindset is due to exhaustion and stress, however with all the hurdles I must jump on a daily basis to ensure my daughter has a happy and fruitful existence, many more obstacles are often placed in my path due to the selfishness of others.

I believe that everyone is selfish in some regard, due to self-preservation, however occasionally I will have the misfortune of being reluctantly involved with a stranger of some type that almost blows my mind with their conceited attitude.

Have people always been like this? Were people so self-serving when I was a child? It certainly didn’t seem that way.

Time and money seem to govern the majority, and if you happen to get in their way on their quest to gain or save either, then you are treated as though you are nothing more than an insentient obstacle that they must vanquish or evade.

My life is a mess at the moment. I don’t sleep. We don’t sleep. We have not slept, as a household, since Acorn was born.

Those first few months of baby-sleep were easy to deal with; knowledge in our minds that eventually patterns would shift and we would one day all align to a regular routine of what I would consider to be “normal” sleep.

However, it has only got worse as time has passed.

A screaming, immobile baby is nothing in comparison to a fully-mobile, screaming 5 year old who likes to turn on all the lights and loud music at 2am.

I am not really alive anymore. My new role is akin to a spectre, slowly disappearing, floating around somewhat aimlessly during periods of childless inactivity, yet having to regain my opacity, mentally, once I’m again on-call for caring.

My work has always been a mix of fiscal savviness combined with creativity – yet these two areas of my mental agility do not fare well under the current strain I am experiencing.

This is leaving me creatively nullified and quite out of pocket.

I can not see an end nor a solution to this issue.

I am giving every part of myself to ensure my daughter survives. With this, I can say with some assurance that I am not wholly selfish. Hitherto this date I have, of course, done many selfish things in my life and thus I would call these acts my mistakes, and I take the time to try my best to learn from them and not do them again. This takes effort, and thought, and it is not easy to be as selfless as required when leading a life like my own. I don’t always succeed but I at least try.

Once you view the world from this very particular angle, it allows the light to cast upon the ruination of humanity, illuminating from this lesser-viewed angle, what the roots are of our collective problems, as we veer forwards into tumultuous times.

I believe that without life-problems of this magnitude, it can be so easy to forget what a problem actually looks like. Everyone thinks the slightest misalignment of their happiness is classifiable as a bonafide problem. If there’s a solution, then I would say, it is hardly really a problem you’re dealing with.

So many are swept away upon a sea of petty grievances, caused by boredom, the influence of throwaway media and a true lack of anything worthy of indignation – I see people wasting their potentially perfect lives on the most unimportant of quotidian trivialities.

Selfishness seems, to me, to be the biggest problem the civilised world is going to have to overcome before we can progress any further.

Selfishness encompasses everything that is a negative obstacle that would otherwise ensure a positive status quo for all.

Prove me wrong, please – be great, be courteous, be humane and civilised.

If you get to sleep all night, you’ve already got an upper-hand on me in creating your own happiness. If you are selfish and unhappy, clearly it’s doing you no favours. Perhaps now would be a good time to oust the selfishness and allow the altruistic in.


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Lending a Hopeful Heart

Hello.

 

It’s more than a year since I last wrote on my blog. It’s amazing how your lifestyle can go through such metamorphosis in only one year. Yet, seemingly, remain almost the same product and experience it was beforehand.

We’ve seen a lot of positive changes in Acorn in the past 9 months. I write this as a declaration for all parents of very young children whom have been diagnosed with autism.

 

I must state at this point, I am talking to those parents whom have never heard a single word leave the beautiful lips of their precious child. For the parents who haven’t slept past 3am since their little one was born. The parents who strive to transform this sometimes unforgiving world to accommodate the needs of their very special little girl or guy who doesn’t understand the basics of human interaction. Those of you who spend every evening searching the internet for the whys and wherefores of autism; bleary-eye, exhausted in body, mind and heart.

 

I write to tell you to be positive. I am writing to tell you that you are doing it right – if you’re doing your best, heck you’re doing better than most other people on this planet.

You want to know the truth? Autism is a multifaceted puzzle and each and everyone one of our kids is a piece of it.

You know that your child is different from the other children with autism you’ve met along your journey.

 

The key is this – you know your child better than anyone else, be it professional or judgemental. Never, ever negate that personality trait in your child that reminds you of yourself as a child. Don’t allow anyone to regard the personality of your child as a symptom of autism.

 

That twinkle in their eye, that subject they love, the way they touch you or hold a strange affinity with something otherwise deemed unusual – these are all authentic aspects of your child’s personality – and believe me, they absolutely, most definitely have one uniquely of their own.

 

Elephants and Eggs - not the average interests of an average child

Elephants and Eggs – not the average interests of an average child

I know in the beginning, it can be hard to separate those autistic traits from what you hoped you’d experience from your child. What is paramount at this stage is that you don’t give up looking for your child through the misty screen of autism.

Even the smallest inkling of a personal interest displayed by your child should be cherished, developed-upon, utilised as a tool and nurtured.

Alarming as it may be that your child fixates upon inanimate objects, or particular words – use those as a tool to break-in to your child’s world and show them that you can traverse the same psychological ground as they.

 

At this point, I will tell you this: my daughter is starting to talk. I will not candy-coat the progress we’ve made; she’s still massively trailing behind her peers.

Yet, given the way she has functioned socially for the past 4 years, even hearing a single noun from her mouth would be a colossal developmental achievement worthy of mention.

 

However, she is now starting to put words together – and whilst doing so, looking us in the eyes to garner our reaction or approval.

 

So very far down the spectrum she was at the time of her diagnosis at 2, unofficially, and 3 for paperwork purposes, it was assumed she would never gain the ability to meaningfully communicate in her lifetime.

 

I am now proud to tell you, that finally, I am “Mummy”.

 

I am not Mummy everyday, I am not Mummy when she’s requesting nor when she greets me, but when I’m not there – that’s when I’m finally vocalised as my Mummy-moniker.

 

Life is still very difficult, we still have behavioural issues, meltdowns, confusion, endless sleepless nights and moments of public prejudice – but our relationship – with each other – has transformed to provide us with moments of pure parental bliss that I feared would never transpire.

Summertime Gingham, Chewelry - School Stuff

Summertime Gingham, Chewelry – School Stuff

She’s 5 now. She’s been full-time in mainstream school with a full-time 1-to-1 since January this year.

The past 5 years of my life are nothing more than a painful, exhausted blur. I have lost some of my mental ability due to sleep deprivation – even writing this trying and testing me in a way I’ve never experienced before.

I’ve lost friends, I’ve lost business, I’ve lost a part of me that was naive, splendid and luminescent.

 

However, I’ve gained a new way of looking at life – I am irreverent towards the status quo, I have a tiger-heart instead of the fragile, weak one of a mouse. I spent the majority of my life before my daughter listening to everyone, to my detriment – and now I have a filter for the irrelevant, the biased, the selfish and the intolerant.

 

Your child is, in someways, an anomaly: “oddity, peculiarity, irregularity”.

They are a “deviation, a quirk, a departure, a divergence”.

They are “an exception to the rule”.

But… rules were made to be broken, and our kids broke the mould. It’s ok – it’s really ok, they will get through this, and so will you – it will take all the strength you never even knew you had in you. It’s going to take so much thankless hard work that you will periodically, and naturally, question if there is much point in continuing. You’re going to have to radically change your perspective on what life is supposed to be all about – and I know, I get it, I understand. We’re all fed the same life-lessons as we develop from childhood to adulthood – but don’t dismay that your child isn’t the child you were expecting.

 

They will become more than you’ve ever even imagined if you can stay strong and continue to fight with a tiger’s heart, I am promising you this – every page you turn in an autism book, every attempt you make to break your child out of their world and forcefully drag them into yours, every tear you shed in frustration – it’s all leading towards something so important – the happiness of your child, and small steps towards children with autism being accepted and better understood in the wider-world.

It will never be perfect, but perfect is entirely overrated and dull.

Don’t hide them away, don’t be ashamed, and don’t be afraid – give them every opportunity you wished for them before their diagnosis. Every supermarket meltdown, every guileless glaring glance of ignorance thrust in your direction – it’s a learning curve for you and them.

A bag of surprises as a reward for sleeping without waking until 5am.

A bag of surprises as a reward for sleeping without waking until 5am.

You are one of a select few parents on this planet who will experience the extremes of parenting. It’s going to try you, you’ll ask yourself if you can carry on – and although I’m not religious, I can tell you that I’ve very rarely met the parent of a disabled child I didn’t like, almost as if they were chosen by the universe for this very important role.

Whether that’s because they’ve been humbled by their child’s experience of the world, or that perhaps, just naturally, they were destined for the challenge, the truth is this : you are doing an amazing job, you’re witnessing the world from such a unique, niche angle that you’re above and beyond many people.

Humility, love, acceptance, guidance and hope – those are your tools, and whenever you start to falter, rest assured that there are people here to lend a hopeful heart.


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How to Spot an Autistic Kid

Hello dear readers.

It’s been a long time since I last wrote here, and there have been many-a reason for that. However, of late, I’ve felt increasingly inclined to sit and write a post that I think would benefit many people.

Of course you will understand from the get-go that the title of my post is somewhat facetious in nature. Or perhaps you didn’t understand that, and have stumbled upon this post looking for an answer to your question.

The question being: how to spot an autistic kid?

I’ll start by clarifying something for you – there’s no way to instantly spot a child who happens to be autistic.

Every single child with autism I’ve met thus far has been completely different to my daughter. Yes, some share similar traits, interests, even a similar personality, however most of the time, it is quite difficult to spot a child who has autism, especially when visually comparing them to their peers.

 

Often I wonder if the world would be a little more understanding if there was some sort of visual indicator that a child has autism, yet, unless I dress my daughter in a garish jigsaw-puzzle print dress and unwittingly place a little hat on her that says something cringe-worthy like “I’m AWE-tistic!” on it, people are not going to be able to tell straight away.

(Please note, if my daughter decided of her own volition to don an “awe-tism” hat, well, I’d have no qualms whatsoever)

 

The reason I’d like to get this post off my chest is because sometimes, believe it or not, being a parent to a child with autism can be pretty trying. Often the most mundane and pedestrian of everyday tasks can somehow be transformed in to surrealist public sideshows using the innate powers of annoyance possessed only by children, with autism serving as the glacé cherry on top.

My advice, as follows, is more an account of how we firstly came to realise that our daughter had autism, with a few examples of traits that are considered to be autistic, to further illustrate what may occur on a daily basis in our lives.

 

PART 1 – Noises, Speech and Talking in General

My daughter is 4 years old, and is currently classified as non-verbal. She’s been non-verbal all her life, yet, she is now less non-verbal than she was about a year ago.

As a baby, especially moving-on to toddlerdom, my daughter had a fantastic range of noises she would create for different circumstances. Both my partner and I have very fond memories of what we used to call the “tribal baby yell”.

At around 9 months old, my daughter would swing her head either left or right, her sideways glance transfixed on us, stick-out her tongue from the corner of her cheery grin, and squeal with delight when she was happy about something. It was absolutely darling to witness, and it was abundantly clear that she was really quite pleased. However, as time progressed and we learned more about her difficulties, we realised that this tribal baby yell was a precursive sign of her autism.

Now that she’s 4 years old, she’s finally starting to build a vocabulary. When we attended a Hanen group this time last year, she had around 5 words in her vocabulary, however now, I would find it hard to count how many words she can say. 

So, herein lies the tricky bit about autism. To an on-looker my daughter may seem totally capable of talking. Perhaps we’re out for a walk; her in the buggy (we’ll cover this later), me behind, dutifully pushing my giant 4 year old down the street.

She may turn around and say “We’re going to the park to feed the ducks?” and I will say “No, not now. First shops, then feed the ducks”. At which point my daughter will more-than-likely explode like a small human bomb, writhing around and screaming “GOING TO THE PARK TO FEED THE DUCKS!!!” over and over and over again, until I do indeed acquiesce upon realising that the shops just ain’t happening today.

Music is a language with more meaning than words.

Music is a language with more meaning than words.

Now, there’s a lovely fully-formed sentence leaving the perfect little lips of my daughter. A stranger would possibly contest her supposed lack-of speech, yet, that exact sentence is rote-learned. I’ve basically sing-said the words to her every single day for the past year once approaching the park – when we’re going to feed the ducks (something she loves to do, although feeding the ducks mostly involves me feeding them, whilst she dances for them singing “Too Much Candy” from Yo Gabba Gabba!).

Language is learned almost like a musical phrase for my daughter. There is no definition of each word in my daughter’s mind, except perhaps keywords, like “park” and “ducks”. I can only tell you that although this use of speech is simplistic, it is a giant leap from her having no functional language whatsoever for the previous 3 years.

Also of note is that my daughter can not as of yet, transpose this sentence for other uses – for example, she has yet to say something to the effect of “we’re going to McDonald’s to eat some food” or “we’re going to the kitchen to pour some drink”.

Therein lies the mystery of autism and language delay. My daughter is absolutely driven by music, and although there’s a lot of gibberish amongst the lyrics, where she’s yet to formulate the correct sounds needed to sing the words verbatim, she can repeat huge sections of songs with no problems at all (at this point in mostly English, but she has an unusual predisposition for Japanese also). 

My daughter will use these chunks of song to comment upon her everyday life, and again, it may seem to an onlooker that she is capable of speech – the truth is, she is capable of physically talking, but using these noises we call “words” to communicate is a very different kettle of fish.

When a child has only rote-learned phrases to allow them to communicate, it basically negates any possibility of a conversation.

Think of it like this: You’ve been given only half a text book of everyday French phrases. Inside, the English definitions and translations are at their most basic. Perhaps one of them is

“Je voudrais un grand verre d’eau avec de la glace et de citron s’il vous plaît” – English translation reads: drink of water

Now, you could quite easily go to a French café and request your water, but you’re still not quite sure exactly which part of what you’ve said indicates that it is water you desire, and even if you could fathom that d’eau translated as water, you definitely don’t understand what the rest of the words mean.

Perhaps the waitress brings the water to you, but then tells you, in French, that they haven’t got any lemon, but you can have lime instead, and they only serve small glasses of water…

It would be at this point you would meet a language barrier. It seems to be very similar for my daughter and her general understanding of language. This is why I simplify my speech especially for her – I disregard most idioms, colloquialisms and even pronouns, to present her with the information in the most straight forward way possible.

“Would you like a drink of orange juice or milk for breakfast?” would simply be “Drink? Orange or milk?”

Which brings us onto yet another difficulty. Perhaps I do offer my daughter orange or milk. Due to the time it takes her to process the spoken word, she would almost always say “milk” – and this is because it is the last word she heard. She understands it is a question, and as I would almost always hold out the items in question in front of her whilst I ask, she may be staring intently at the orange juice, yet vocalising an apparent desire for milk.

At which point, I will ask again, yet swapping around the choices of drink:

“Drink? Milk or orange?”

This time, I will probably say it slower, and make it clear with the drink cartons as visuals which one is orange, and which one is milk. If she says “milk” again, then milk it is… however many-a-time she has lurched forward for the orange carton and finally said “orange”…

 

So, how would you know that my daughter is autistic?

Well, unless you tried to talk to her directly, you probably wouldn’t know. We have worked for years with simplified speech, PECS (Picture Exchange Communication System) and moreover, I have basically learned from her how best it is for us to communicate with each other. Therefore, although we are not conversing in the traditional sense, we are having our own special conversation.

There are a number of sound and speech-related quirks she possesses, such as her penchant for singing at the top of her voice no matter where we are, or her affected American accent when reeling-off sections of dialogue from Yo Gabba Gabba! – however, most strangers would simply see her as a little girl who likes to sing and repeat fun-things from TV – which in many ways, is the truth of the matter, autism or not.

 

(Embarking upon writing this post, I was planning to cover a number of subsections about autistic traits, however once I started typing-away it became quite clear I would be writing for 4 days solid if I were to cover everything in one post! Hopefully I will get time to add further parts to this post in the future. If you have any questions about our autism experience please do leave a comment below!)

 


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Everyday Autism Awareness

I have decided to give my daughter the alias of Acorn – because that’s quite symbolic of who she is, and the stage she is at right now. My little Acorn who will grow, change and flourish.

 

Yesterday I took a necessary yet somewhat stressful trip to the supermarket to pick up 3 items. I usually limit my shopping trips to less than 5 items when I’m with my daughter, not only because it means I can use the fast checkout, but because Acorn really doesn’t enjoy the environment of shops.

There are some chains that bum her out more than others – the high ceilings and industrial-style lighting of Tesco branches really cause her anxiety, Sainsbury’s meandering isles seem to overwhelm her and I find she always insists on running about to release the tension. In Aldi the close proximity of other patrons seems to cause her personal space issues. That doesn’t really leave me much choice on where to quick-stop for my grocery shop, so I just bite the bullet and take her where I need to go – as long as I can “get in and get out” in record time, we may both survive unscathed.

A rare sleeping Acorn

A rare sleeping Acorn

It’s taken me quite a few years to figure out that I simply can’t do a “proper shop” with my daughter, and I’ve managed to ease some of the tension with chocolate buttons and smart phones, but there are still occasions (other than mid-isle meltdowns) that cause me to want to burst into tears.

When shopping yesterday, I squeezed my unusually large 3 3/4 year old into the seat on the shopping trolley, whizzed around the supermarket grabbing smoothie and baby wipes like a human whirlwind, then proceeded straight to the self-checkout.

As I scanned my items through, Acorn was using her feet against the side of the checkout to push the shopping trolley around violently, right into the path of other patrons. Luckily most were understanding, or managed to swiftly strafe sideways to evade the wheeled danger in their path, but other than this nothing had caused too much of a problem.

 

That was until a well-meaning checkout assistant picked-up the plastic toy cow my daughter had dropped on the floor. As I was grabbing my receipt, I heard “here you go love, your toy cow was on the floor”.

I turned to see the man trying to hand the cow to my daughter, who was, of course, completely ignoring him. I interjected “Look Acorn, cow toy” and repeated the phrase with a few different intonations until I passed my attention to the somewhat niggled checkout man. His face seemed confused, and quite put-out.

He held the toy cow within inches of her little face, and still, no reaction (she was more concerned with my interaction with the touch-screen checkout).

I took the cow from the man, and thanked him sincerely for picking it up, and then he said it – “What is it? Is she shy or something?”

There was no real malice in his enquiry, because of course he was just confused, but I could feel my eyes welling-up.

I walked away and under my breath muttered “no, sadly she’s not shy”. The moment I muttered that utterance, I immediately hated my myself for being so immature.

It’s not sad that she’s autistic instead of painfully shy, and why didn’t I just say “no, she has autism”?

I find it difficult to tell strangers that Acorn has autism, because I’m not sure how they will react. Believe me, I’ve tried before, and mostly it makes people feel uncomfortable.

They don’t physically back away from us, but mentally I can sense it.

“Oh, I’m sorry” is the usual reply.

“It’s really OK” I will tend to rebut. What else am I supposed to say? I mean, I could start with a diatribe about how wonderful my daughter is, how she’s smart and funny, loving and joyful. How I’m in love with her and I accept that she views the world in a different way to some of us more typically-minded folk – but I doubt that would remove any discomfort from the situation, nor would anyone appreciate the time I would take-up with my radical speech.

Yet, I realise it is my responsibility to spread awareness of my daughter’s condition, and educate the seemingly infinite uninformed masses to the idiosyncrasies that make Acorn who she is.

That sets-up another quandary – to spread awareness, and start to lay a path of perhaps less tension and social exile for future parents and children who are living with autism, or on a smaller, more immediate and intimate scale, forevermore have my daughter labelled as “the autistic kid” by those I spread the information with.

You see, whether it’s because I’m super-positive or entirely deluded, my daughter is very much more than her autism to me. Acorn is all of the above adjectives I used, and more.

I think as I type this blog post, I really know what the answer to my predicament is – I need to learn to accept that people may not always be able to accept the word autism.

Autism isn’t going anywhere anytime soon. My daughter certainly isn’t going to be removed from the confused gaze of the public eye, and if I want to avoid tear-jerking checkout moments, it is up to me and every other parent who has a child with autism to start educating those they meet about exactly what autism can look like.

Sometimes it’s when Acorn is singing “I Like Fish!” gleefully at the top of her voice in a pet shop. Perhaps it’s when Acorn will innocently try to make off with a confused and worried new mother’s baby in its buggy at the park (Acorn likes to push buggies at the moment). Maybe it’s when somebody tries to return to Acorn a discarded toy cow without thanks.

I am lucky because I have a special connection with Acorn, not only because I’m her mum, but because I’ve taken the time and patience to try and understand how she views the world. I know how to tease out her dazzling, heart-melting smile. I have learned how to prompt Acorn to use her cute voice, and have grown to understand her often dramatic but always entertaining forms of communication.

Perhaps if I were stronger, I could teach the rest of the world how to see my daughter as Acorn, and not just as autism.

 


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Setting the past free

I love cats, cats are great

I love cats, cats are great

Earlier in the year, I made many of my blog posts private – we were going through too much – with the house, cats, operations, autism and all.

 

I felt a little bit like people were quietly stalking my blog, watching my car-crash of a life unfold – there were page hits, but no comments or contact – even from people I knew.

 

I didn’t feel comfortable with that. Maybe everything was so mind-blowing shitty that people just didn’t know what to say, or maybe our problems made people feel a little better about their life – without being too negative, what else would I think without any input?

 

Anyway, here’s a test post I did when I started my blog, that I didn’t publish, because basically it’s just a really big photo of one of our cats.

 

But I’m letting you know I am here, and I’m setting some of the past free.