It’s time!

Almost a year to the day since my last post on here, it feels like time for an update. Maybe it’s an age thing but my mind feels slower than twelve months ago, or perhaps it’s a natural symptom of a hectic lifestyle which doesn’t leave much time for processing. The one bonus of living day to day in survival mode though, is that autism has just become ‘another thing’ which has to be factored in to all our arrangements, as opposed to being ‘the thing’ around which our whole lives revolve. Or maybe it is just a reflection of how much we now instinctively adapt and accept a muted version of family life because, at the end of the day, if Rusty is calm and happy, everything else tends to fall into place. While it may not be everyone’s idea of fun, our summer holiday is the epitome of predictability; quiet, antisocial and with minimal surprises. Yes, things have changed but it works. Most of the time.

So, the headline of August 2019: Rusty is a calm, bright, sensitive little boy with a great sense of fun. It’s basically been a walk in the park… ha bloody ha!

In all seriousness, he has matured beyond measure in the last year and his social development mirrors that. At school, we are told that he plays and works with other children, whilst also spending time on his own when things get a bit too much. I hesitate to refer to his classmates as ‘friends’ because, quite honestly, I’m not sure there is that depth of feeling from either side which is a bit sad really. A lot of that is down to perspective though, because while it might bother me that he doesn’t have any play dates, he is not particularly fussed.

What I can’t let slide is the downright ignorance that he faces, which is obviously bred through parental prejudice and and an unwillingness to understand or appreciate difference. This is nothing new but it never gets easier and is more than simply not getting invited to birthday parties. We have bumped into a schoolmate at a theme park and seen his dad physically move him away from Rusty, completely dismissing any possibility that they could play together for a few minutes. Rusty himself has been told “you need to go to a special school” which really upset him, not because of the connotation (which he doesn’t understand) but because of the implication that he would have to leave a school where he is happy. Ho hum.

On a lighter note, his relationship with his little sister had blossomed into something really rather beautiful. While Little A is a bit of a terror, she is sharp as a tack and, at the age of two, nearly on a par with Rusty in developmental terms. They bicker, they fight and they tease but they also play, chat in a very funny way and laugh A LOT. Whilst exhausting and often exasperating, it is wonderful to see the result of their closeness – she has enabled him to grow in ways I could never have imagined and I have no doubt that he will repay that in time – after all, living with an autistic brother is bound to make her compassionate, kind and non-judgmental, right??!!

Deep breath… with every high comes a low – or so it feels – and where the peaks of this season have been, in some cases, astonishing, perhaps it’s not surprising that the troughs have been immense. Mostly I am talking about the A word… not Autism (that’s old news) but Anxiety which has become a bit of a monster.

Let’s talk numbers for a moment for the numerical world is Rusty’s haven – predictable, non-negotiable and infinitely rewarding. At school, he excels in maths and it’s amazing how many calculations you can work into daily life – he loves it. His go-to conversation starter is to ask people how old they are and what time they wake up in the morning. It is amusing, sweet but so, so boring when that is your entire source of conversation – car journeys can be particularly taxing: “how old is that house… how many miles to London… what time does that sheep wake up?” What not everyone sees though, is how this need for information intensifies when he is out of his comfort zone – questions become constant, very repetitive and completely meaningless – the tension is visible in his eyes and I can’t bear to leave those queries unanswered so we enter a bit of a vicious circle.

There has been a lot of media attention over the last few years on the impact of autism on girls and the fact that they can be very skilled in the art of masking symptoms. Rusty’s situation is different in that his difficulties are very clear but that does mean his deeper emotions go unnoticed. Lateness or an unexpected change of plans can make him so agitated that he will scratch, emit odd noises, flail around and be unable to form proper words – behaviours so stereotypically autistic that it hurts. General understanding of mental health has improved so much in recent years that most now accept it is possible to be both smiley and anxious which is a huge step forward. We are not there yet because he still manages to fool a lot of people and it is probably only at home that the mask really slips but maybe that’s ok, for now.

This has really felt like the year of acceptance, when autism, although omnipresent and often overwhelming, is not always the first thing to deal with.

That’ll do for now… à bientôt!

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When all this is a distant memory…

Nearly half-way through the summer holidays and restored by a few decent nights’ sleep, the flood of emotions that followed the end of term is just about sinking in. Sheer relief at surviving Rusty’s first year of school (and my tenth as a teacher) mingled with pretty nauseating pride at his glowing reports and handwritten notes from teachers and assistants, positively gushing about his endearing personality and almost unfathomable progression – it is more than we ever dreamed was possible. But while I am immensely proud and relieved, there’s also a lingering sense of unease because, although extraordinary, this has been but one year. Those early weeks and months, when he almost stopped talking, could barely be coaxed into engaging with the real world and exhibited signs of intense anxiety, are still such a raw memory that it is painful to think the pattern could repeat itself indefinitely. So whilst determined to enjoy every moment of this summer break, I might not start shouting from the rooftops quite yet – one day at a time.

I have been thinking about memory a lot lately, having come to the realisation a little while ago that, while Rusty has an enviable capacity for recalling processes and sequences as well as a strong association with place, he doesn’t actually seem to remember much about his life before about a year ago. Why this particular point in time? Because the explosion in his speech that began last Spring changed everything. The neurological link between language development and conscious memory is a well-trodden field of study and, when you think about it, makes complete sense. Not only was he previously unable to verbalise his thoughts but the lack of language would have, in all likelihood, severely limited his ability to process memories.

Just consider how the world must seem when your own recollections, far from providing reassurance, points of reference and perhaps most importantly, warnings, only actually serve to confuse – like an album documenting your whole life where the photos are unorganised, without any labels to provide context.

And memory is nothing if not fickle; subjective, often selective and prone to distortion, depending heavily on the emotional connection to an event. Whilst we are busy #makingmemories or feeling nostalgic because our babies are #growinguptoofast, the ability to forget trauma or blank out periods of intense stress, upset or pain is critical to maintaining a healthy mind. Based on our experience so far, I would also imagine that an underdeveloped emotional intellect can exacerbate the situation further, meaning ASD children are particularly poor at selecting which memories to keep and which to filter out. This may explain why, for the longest of times, Rusty showed no sign of remembering even his closest of relatives but knew beyond any doubt that a hand-dryer would frighten him.

Pause for thought.

Not surprisingly, our house is littered with photos of Rusty and Baby A and just recently, he has started to recognise himself and understand that they show him at different ages which, to begin with, took him right to the point where anxiety and excitement collide – a nervous assertion “that’s Rusty when three” accompanied by a slightly maniacal smile. He also got his hands on an album of his baby photos and studies it intently, telling us all about the images with a well-rehearsed narrative “R when zero (years old)… Daddy hold baby R… R asleep, as though he is piecing together his past, rather like an amnesia sufferer following an accident.

So now it’s time to build on a solid(ish) foundation; to effectively re-introduce him to people and to document his experiences in a way that helps him understand the world and his place in it. Piece of cake!

A few choice words.

Our choices define us.

So what happens when the responsibility of making choices, especially the right choices, becomes overwhelming? When choice is no longer empowering, but frightening and confusing?

Ever since our very first contact with speech therapy, we have used the language of choices with Rusty as a means of giving him confidence and ownership over situations. From those very early days with the Picture Exchange Cards System (PECS) where getting him to express a preference between two pictures was a colossal achievement to where we currently find ourselves – huge strides in communication but still having real difficulties with expressing anything other than statements of fact. Every single day, I come home from work and ask “Have you had a good day?” only to be met with a blank look. Alter the question to a choice: “School good or not good?” and there is a faint chance of eliciting a response. While the desire for him to make his own decisions is wholly well-intentioned, I have begun to wonder how much it actually contributes to his anxiety levels. After all, plenty of neurotypicals willingly (proudly?) describe themselves as indecisive, myself included – I dread being in a restaurant with an enormous menu and an incoming waiter 😱

But choices are everywhere, and making the right choice often requires us to judge how the consequences will affect others. Can you imagine a more stressful situation for our autistic friends? It is a sign of the times that behaviour at Rusty’s school is described, not as sensible or naughty, but rather as demonstrating good or not good choices. Having replicated this language at home, the effectiveness is obvious but also a little concerning. As I mentioned at length in my last post, Rusty has no lack of empathy and seeing the upset on his face on becoming aware that he is not making good choices is heartbreaking (but also necessary?!)

This is also probably the aspect of SEN parenting that many find the most stressful – the responsibility of acting in the best interests of your child alone, in spite of any ramifications and judgement. 4 years ago, when I realised that Rusty was displaying symptoms of autism, I had to choose whether to confront those suspicions or bury my head in the sand. Over the following months, I had a choice of whether to talk about his difficulties or keep things under wraps (think we all know how that turned out!)* and so many more decisions: How forceful to be with different services, which school to attend, whether to have more children… And then there is the (still) constant choice of how far to push him so that he is challenged but knowing when to stop. This evening over tea for instance, in my determination to extract some information about his day at school, my questions became so convoluted and choice-based “play with J today, yes or no?” that I completely lost him; no responses, no eye contact, no evidence that he could even hear my voice. This is not uncommon.

Any parent will do their level best to give their children everything they deserve and I do not really regret any of our actions to date, even if others think that we are taking advantage of our situation which, although sometimes hurtful, it is completely understandable; I would never have been able to sympathise with parents like me before all this started.

I have just read an interesting, slightly gut-wrenching article (ref: below) which explains some research showing that certain autistic traits could potentially be reduced or even eliminated through state-of -the-art gene editing techniques. Can you imagine the weight of responsibility brought by that choice – would you really choose to have the less desirable traits of autism edited out of humanity? I have said many times that life with Rusty, whilst being joyous and fun and infinitely surprising is exhausting and has moments of immense sadness. Knowing that, despite his almost unbelievable progress over the last year, the statistics and assessments still say that he is significantly delayed in almost every area of development, with no guarantee that he will ever really catch up properly. I love my boy the way he is but, would I choose a life for him which didn’t revolve around autism? Yes, a thousand times over.

Dumbledore knew that: It is our choices, Harry, that show what we truly are, far more than our abilities.”  Carry on choosing folks, but choose wisely.

*As a side note here, I have actually made a conscious choice to talk about Rusty less, because often an assertion that he is fine will generally suffice.

https://www.telegraph.co.uk/science/2018/06/25/autism-traits-significantly-reduced-breakthrough-gene-editing/

How would you feel?

Empathy: The ability to understand and share the feelings of another or, as I first had it explained to me as a child: “feeling sorry with someone, rather than feeling sorry for them”.

One of the great paradoxes of autism is that those on the spectrum are often assumed to lack empathy and yet, they face the significant challenge that many people are either unable or unwilling to walk in their shoes.

Think about that critical early stage of development in babies – prolonged eye contact and social, reciprocal smiles – and imagine that those most of basic of interactions, far from being natural and comforting, actually make you feel physically uncomfortable and even frightened. (Look at that, barely a paragraph in and I am demanding empathy of you – ironies!) Rusty did not respond to his name with appropriate eye contact until he was nearly 4 but that is only half the story. Over the years not many things have upset him as much as being cajoled to engage with facial expressions which he obviously understood to be loaded with meaning but could not decipher. He did not draw any kind of face – “eye, eye, nose, mouth” – until he was nearly 5 and could not recognise even the most familiar people. I still remember a few years ago, walking back into the house after spending a couple of nights in hospital and, rather than being greeted with affection, I got a cursory glance as he took a momentary pause from his important business.

However, persistence with the games and bribes means that he will now actually identify people both in the flesh and in photographs (his baby sister is doing this at the age of 16 months, by contrast!) and can tell you whether a crudely-drawn face is happy or sad. There has been significant research to show that children’s interaction with facial expressions can actually be improved by using robots, which are more predictable and less frightening than real people (amen to that!) With time, practice and probably lots of over-acting on our part, the hope is that Rusty will be able to engage with more complex emotions and tricks like identifying Duchenne markers may even allow him to judge whether feelings are genuine. I can’t even imagine how we are going to introduce him to the concept of fake expressions and dishonesty – answers on a postcard please.

I have digressed slightly from my point here but think about it: If Rusty can not read a facial cue, how on earth can we expect him to empathise, especially when his comprehension of emotions is limited to 😃 and 😞? Well, we can dispense with the ludicrous notion that autistic people do not feel for a start because, if anything, he actually experiences many things more deeply than the rest of us and I suspect that intensity is sometimes terrifying – easier to just bury those feelings in routine and repetition maybe? It’s not difficult to see where those stereotypes come from. Genuinely though, because he has always been such a self-sufficient and content little boy, seeing him in emotional pain can easily bring me to tears. We never use the word naughty to describe his behaviour as that sends him into hysteria and introducing time-out on THE STEP for serious misdeeds was simultaneously brilliant for its effectiveness and heart-wrenching because the impact of a one minute exile is so profound – there is no way this child does not register the repercussions of his actions. In much the same vein, his anxiety often manifests itself in a desire for praise or reassurance that “Rusty good boy? Rusty not naughty?” and we have to be oh-so-careful with our choice of words because any implication that “Mummy sad” will see concern etched upon his face and slightly clumsy attempts at comfort (usually by patting/stroking but occasionally an actual cuddle!) -and “Rusty make mummy sad” has to be reserved for really major incidents because of the devastating consequences. If that is not empathy, I don’t know what is.

Likewise, encouraging him to express his own feelings is tricky, requiring a choice of “happy or sad?” and, even with those cues, I’m far from convinced that he actually understands what he is saying as he often claims to be happy when seeming anything but. Having said that, hearing his very occasional, spontaneous declarations of “I’m happy” (yes, he has actually used the first person pronoun a few times!) is reward enough for all the extra effort.

But this is what autism does. It flips life on its head and makes the mundane and simple seem ridiculously challenging, whilst bringing humour and joy in the most bizarre scenarios. It also makes parenting feel like a crazy cocktail of following instincts, borderline telepathy and a whole load of guesswork!

I hope with all my heart that Rusty will one day find the words to explain his perception of life and is rewarded with empathy because the world needs more people like him; who are kind and funny, who love unconditionally and want to be loved.

Enough of the pretence.

As World Autism Awareness Week draws to a close, I’m feeling like something of a fraud. For the first time since our autism adventure began, I have not gone blue, promoted videos about sensory overload or actively looked to develop understanding within my various communities and here is a slightly garbled attempt at explaining why.

It is hard to disagree with the premise of improving autism awareness and the intentions behind the week are noble and genuine but my more cynical side can’t help feeling that if thousands of lives, including ours, have to revolve around this strange condition 24/7, why should the rest of the world get away with being aware for one measly week every year?

Obviously I’m preaching to the to the converted here because anyone reading this is already aware, compassionate and willing to learn about autism. However, with diagnosis rates rising year on year and ever-increasing media attention on the autism community, it seems absurd that ignorance and prejudice are still commonplace and that awareness is actually not enough. Chances are every time you walk down the high street, you will encounter someone on the spectrum, so here are a few things they (and their champions) may want you to appreciate:

a) People with autism have feelings, even if they can’t always express them well. Those school parents who are actively discouraging their children from being friends with Rusty are breaking his heart and we are left trying to make him understand why ______ doesn’t want to hold his hand anymore. Following on from that…

b) Kindness goes a long way. My heart sang the other day when a cashier at a supermarket actually took the time to engage with Rusty, having noticed that he was fascinated by the beep of her scanner and the changing numbers on the display. In his words: “Thank you, lady.”

c) Using the stories which appear on the tv or social media at this time of year to diagnose your child with ASD is not cool. Not every slow talker or child with behavioural problems is autistic and autism is not just a fad. Which leads me nicely on to…

d) Unlike other subjects of awareness events, autism can not be foreseen, prevented or cured so just pause a moment before telling your friend about a fashionable new diet or therapeutic technique that you saw on Facebook, and suggesting that they have a go at it with their child.

Along with the regular bouts of anger and frustration, this bitterness is probably just another inevitable stage of a life filled with battles, worry and periods of intense exhaustion, wahey! Or maybe it’s a bit like a new relationship… the early days and months are filled with excitement and efforts to promote the very best version of yourself – it’s wonderful but also quite hard work and completely impossible to maintain. So you begin to let down your guard a bit; show your competitiveness, slobbish habits and any other baggage and accept the flaws in your partner because they are far outweighed by the bits that you were drawn to in the romantic early days. It shouldn’t be a case of settling or lowering standards, just an acceptance that life is not always perfect and it is worth digging your heels in for the really important stuff. Basically, we are in the comfy pyjamas and public farting stage of our relationship with autism!

Second chances

23rd February. Today I celebrate, or at least acknowledge, The Day of Revelation. Four years ago, I suspected, understood and accepted almost in the same instant that Rusty was autistic. I will never forget that moment, nor it’s consequences, and time does not dilute the intensity of emotion; in some ways, it actually heightens it. Rusty was 16 months old on that life-altering day and he is now 64 months. A quick bit of maths tells me that I have now been conscious of his autism for 75% of his life and that percentage of time that we lived in ignorance is becoming smaller all the time – whether that is positive (knowledge is power, after all) or just plain heartbreaking mostly depends on my mood on a particular day!

Recently, I had a thought for which instantly berated myself. Then I tried to justify it and half succeeded. Then I got confused and put it to the back of my mind and now I am writing about it.

As I watched Baby A playing and interacting, following instructions and mimicking sounds, something inside me said: “thank goodness we get a second chance at parenting”. Horrible, right? Downright ungrateful really, because we have already had the chance to be parents to a truly wonderful son. Or maybe just relief that we are not going to have to go through the trauma of the assessment-diagnosis-treatment cycle again (if this baby turns out to be on the spectrum, I will question everything I believe!) Or perhaps it is simpler than that. Those stages of anger, denial and acceptance that we have gone through in the last four years – that our version of family life will not be how we always imagined – mimic grief in that the underlying sense of sadness will never ever go away and there will always be something ‘missing’. Having watched with a pang of envy while so many friends experience a slightly simpler version of parenthood, it also feels as though we deserve a chance to get it right. Not that anything about Rusty is wrong, obviously (this is a flipping minefield!) but the prospect of not having to fight tooth and nail for everything is definitely something to relish.

So we get to try our hand at neurotypical parenting but who gives Rusty a second chance? His disability is here to stay so he may never have the the same kind of life as his sister and surely that should entitle him to the benefit of the doubt more frequently than not?

But the world and society do not always work like that. Already, he is encountering prejudice almost every day and when children grow tired of trying to get him to play the right way and move on or adults pose questions and think him or us rude when he does not answer quickly or intelligibly.

It boggles my mind to think how this will play out in the future… schools, job interviews, everyday social situations and finding love sometimes seem completely unattainable.

Today, on our fourth Autism-versary, I am so very thankful for the people who have stuck by Rusty and us through the journey so far. Be kind, folks. Be thoughtful. Look beyond the obvious. Give second chances.

Just keep on…

So Christmas happened and, dare I say it, it was GOOD! Rusty actually seemed to enjoy himself with a few favoured new toys and a generous helping of dinner and all signs of festivities were removed, ready for the recycling collection on the 29th, aaahh. Visits to and from family and friends were planned to the minute and, having stuck to our guns in the face of very irritating pressure from people who should know better, a general sense of calm prevailed. This was definitely a Rusty-orientated Christmas and it worked for us, for this year. Reconciling his needs with those of his sister in years to come is not a prospect we are particularly relishing but that’s not a worry for January.

If Christmas could be classified as a success, the start of term has been verging on failure. Anxiety levels are through the roof, emotions are going haywire and the repertoire of stims is expanding rapidly. What this means in practice is that we are on hyper-alert at all times because anything could either send him into a supercharged cycle of spinning, running and loud noises or else into completely unforeseeable tears of anger or fear. And when I say anything, I mean ANYTHING: YouTube buffering during the millionth repeat of his favourite numbers video, hoovering at the wrong time or not being able to do something “NOW” (a recent and not particularly welcome addition to his vocabulary!) and the list goes on…

To add to the general edginess, we are also being bitten in the backside by echolalia as he has begun copying the noises his sister makes. “It will help him so much when she starts talking properly” is a frequent refrain, in the face of a duet of screeches, gabbling and banging,

AAAAARRRGH!

School, on the other hand, is full of reports of “settling back into routine really well… good listening… participation in activities… initiating communication with others…” which is obviously great but slightly galling. I will never get used to the idea that we might not see the ‘best’ of our own son behind closed doors even though I know deep down that the fact he can let loose at home is because we have created a safe space, free from pressure to conform.

Ho hum… by my count we will only have to negotiate the start of term another 75 times to get the boy through his compulsory education. I’m being flippant here because the truth hurts. Since Baby A came storming into our lives last year and threw everything into utter chaos, I have tried to be absolutely honest about how breathtakingly awful the first few months with a newborn really can be – it still makes me shudder to think of those early weeks – but there is always a silver lining to these horror stories: “it does get easier”.

Having said that Christmas was enjoyable, I have slightly glossed over the fact that the holidays as a whole were tough. Physically, this is a hard time of year after a long teaching term and being on-the-go for three solid weeks with the boy almost broke me. I swear, anyone who is able to sit their child in front of a film for an hour every day and is not grateful for it, deserves a slap! Then there is the mental exertion of being alert to danger from every angle – any parent of a toddler will be familiar with this! Finally, there comes the autism factor which is what tends to tip the balance a bit further towards sheer exhaustion: Not being able to get a reply to the most basic of questions, needing the foresight to prevent disasters and being the sole point of communication as well as provider of boundaries, sanctions and comfort when things go wrong can be all-encompassing and draining.

Undoubtedly things will change with Rusty and, fingers crossed, there will be more positive developments like we have been privileged to witness over the last year but, the underlying difficulties may never resolve. I thought I had accepted the reality of our situation a long time ago but maybe that was the pragmatist talking because the last few weeks have felt like a real period of realisation that “it might never get easier”.

2018… a year to be filled with days of defeatism, a good dollop of humour and a whole lot of just keeping on!