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/

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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!

Ding, ding, round 3!

On Thursday night, I sat down to write and just couldn’t. After spending the last three months in a kind of haze where most of my conscious thought has been distracted by worry for Rusty and the rest focused purely on putting one foot in front of the other, the relief at reaching the Christmas holidays was immense. Proud does not even come close to describing how we have felt over the last few weeks because, to coin a phrase, the boy is smashing school life. Not only has he adapted to new routines and people, but he has also made huge progress in lots of aspects of day-to-day life and there are even some tentative friendships forming, with a couple of little girls who seem to particularly like the company of a quiet, mysterious type.

He has participated in everything from PE lessons to the recent nativity play (where he may or may not have been distracted by a sign which was badly blu-tacked to the wall) and has developed his own coping mechanisms, a lot of which centre on timings: Coat on at 8:16, Daddy’s car at 8:18, snack at 10:00, Daddy come back at 3:00 and so on… So far, it has been relatively easy to stick to his regimental structure but who knows what will happen when something interferes, definitely a case of crossing that bridge when we come to it.

Although the latest report states that his speech is currently at the level of a typical two-year-old, it is developing at a gallop and, while an awful lot is still very difficult to understand unless you are attuned to his pronunciation and style of discourse, he is making himself understood and that is priceless. His constant commentary on the world around him is very sweet and often amusing “man talking to lady… lady cleaning… very noisy bus”  but can also send you slightly crazy when it’s your only source of conversation. When he is worried or excited, he repeats the same phrases over and over and over and over again and the vocalisation seems to help him process ideas and give him some ownership of the situation. At the opposite end of the developmental scale is his absolute love of numbers and growing interest in maths which is closer to the level expected of an eight-year-old. Talk about a walking, ‘talking’ stereotype!

But, more than anything else, he seems happy… ish… most of the time. It is not all fun and games, not surprisingly, and the bad days continue to be epically bad with tears, horrible silences and not being able to get through to him when he becomes fixated on something unreasonable; a frequent source of agitation being Baby A’s highchair which he immediately wants to sit in, whenever she is installed and becomes very upset “highchair now, highchair now, highchair now”

There are more subtle changes in his behaviour though, which make him more manageable; he is less flighty and more predictable in his reactions and he actually tells us what he wants rather than just lunging with no explanation or flopping on the floor when he does not want to do something. All these developments are small in themselves but add up to him simply blending in more and drawing less unwanted attention and, therefore, judgement.

What about home life then? Well, at home we plan our arrival and departure times and stick to them, come hell or high water. We go to the park, safe in the knowledge that he will want to play with a gate rather than a slide. We take unnecessary trips to the petrol station so that he can watch the numbers and most of all. Either Daddy D or I is present all the time, to provide interpreting services and most of all, we keep things simple, whilst all the time chattering away and teaching him how to be kind to his sister who, thankfully, seems to have absolutely zero autistic traits – it has been quite a strange experience to watch her neurotypical development!

And now, having successfully negotiated the term of darkness, we are faced with the prospect of CHRISTMAS. Holidays… food… visitors… decorations… presents… new smells and sounds… a break in routine… an assault on the senses… ooh err! After last Christmas was such an unmitigated disaster, to say we have been cautious in our planning this year would be an understatement. Seeing him involved in decorating a tree was really lovely and one of those things I thought may never happen but that is pretty much the extent of our festive efforts, apart from a few twinkly lights which appeal to his special interest. There has been no Santa visit – much as I would have loved a photo opportunity – and visitors are being kept to a minimum, with arrival times agreed well in advance.

Advent calendars have proved to be an unexpected source of comfort as they have created a routine (apart from having chocolate for breakfast!) and he can see that the days are building up to an event. He knows that “number 24, calendar finished… number 25, lots of presents” so we shall see how the actual day pans out.

Every so often, I am caught off-guard by the feeling that our family life is so different to what we might have expected and the festive season definitely adds to that. When we talk about Christmas it is with trepidation rather than anticipation, predicting confusion and over-stimulation instead of excitement. How we are going to balance this with his sister’s more conventional needs in years to come is still a mystery but Rusty is nothing if not surprising, how ironic is that?!

Right, let’s do this…

Merry Christmas one and all, see you on the other side!

It’s not the same thing… a story of survival

Hello gang,

Sincerest apologies for the lengthy absence but the last couple of months have been a balancing act of epic proportions, centred on Wednesday 6th September 2017: D Day. School.

I will never forget the feeling of leaving the house that morning, with Rusty in his uniform and knowing there was absolutely nothing I could do to support him through the next 7 hours.

Those early days and weeks were some of the most difficult we have ever had, not because he suddenly became a horror but because he seemed so sad and that is not an emotion we have ever associated with him. At the lowest point, it felt like we were losing him as he withdrew completely, hardly spoke at home and seemed far more prone to tears. I would have given anything for him to be able to vocalise his feelings at that point in time but instead we got silences, not wanting to leave the house at the weekends and a hideous sense of guilt that we had made a terrible mistake somewhere along the line.

Although things have improved a lot, there are still days when he is extremely quiet and seems tearful, with Sunday afternoons a key point as he repeatedly reminds us “School tomorrow“. I look at him now and he suddenly seems much older; his face is slimming down and he looks so serious. In our regular check-in with his paediatrician this week, we were actually using the term anxiety and discussing how his symptoms could be managed. He is five years old, for goodness sake! Sometimes, just sometimes, it all seems so spectacularly unfair.

In spite of the huge emotional burden, school have been pleased from the word go. I strongly suspect that his teachers and assistants were expecting more behavioural problems and general awkwardness and so being faced with a boy who actually craves routine, enjoys structured activities and is mostly compliant was probably a really pleasant surprise. It is only now the dust has started to settle and they are catching glimpses of Real Rusty that they can appreciate why we have been so frightened for him up to now.

There was a real turning point though, on his fifth birthday in October. This is the first time he has ever shown any interest in the occasion and because my birthday is just before his, we were able to do a bit of a practice run to see how he would react to balloons, cake and presents. Incredibly, he was actually excited and spent the entire day telling anyone who would listen: “Rusty’s birthday…  birthday number 5… very big balloon… birthday cake” It was pretty amazing, to be honest and you never know, he may even cope with Christmas this year, provided we can keep sensory stimulation under control.

In terms of social development, moving school may have ended his previous friendships but there have been tentative steps towards his building relationships with some other children with reports that they are kind to him and join in with different activities. This will never be simple so if he is content, so am I – the awkward conversations with other parents will come soon enough, I’m sure.

The other thing which has proved invaluable in settling him down is that he has mastered time-telling and we are therefore able to tell him exactly when different things will happen and allow him to process transitions more easily. What remains to be seen is how he will react to unexpected changes to timings as, up to now, we have kept things pretty rigid… time will tell I suppose.

Academically, his understanding of number is far exceeding what is expected of him at this age in that he can recognise and type out pretty much any number between 1 and 9999 and is starting to do a bit of basic mental arithmetic when telling the time: “8 minutes, 3 o’clock” He was right, it was 2:52. Numbers come easily to Rusty, language less so. Whilst his mathematical knowledge is roughly three years above his chronological age, his communication is more than three years below it – that’s a pretty impressive disparity in any book! Although his speech has improved beyond anything we could have imagined 12 months ago, there are major issues: His pronunciation of most words is simply not right and he doesn’t seem able to correct himself, no matter how much repetition we do and so, if you don’t preempt what he is trying to say, understanding him is very difficult. The structure of his sentences is also far from conventional – he has a particular problem with where not should appear in a clause – and his language is very scripted with the same phrases being used in the same situations over and over and over and over and over and over again.

Perhaps not surprisingly, given the huge changes he is contending with, his obsessions are growing with one being particularly dominant: The joy on his face at seeing Big lights (street lights to the rest of us) turn on in the evening or catching a glimpse when he wakes up, makes the dark mornings and early dusks seem much more manageable. As fixations go, this is quite a charming one.

That’s enough for now. Every day, I wish that we could ask Rusty how his day has been and who his friends are and actually get an answer. I wish he could ask us to do things for him and show us why some things are so essential and others are a complete no-go.

This is the start of a long old slog for my boy but there are no words for how proud he is making us every day, survival of the fittest and all that.