Autism is about cherishing the smallest of victories

                                      
                                          Ross with his eldest brother Micah

I’M coming to the end of a fortnight’s holiday with my youngest son Ross, and it has been absolute bliss.

A couple of years ago we spent a fortnight in a caravan on the south of France along with my dad. Then it was tough. Trying to look after a fully dependent child in a small 35 foot caravan in sweltering August heat with not all of Ross’s essentials to hand was tricky.

This time, it’s been a couple of weeks at home in relative sunshine on the Costa del Eastbourne and for long spells it has been just myself and Ross; no-one else. At times it has frustratingly meant no adult company, so bar a quick trip to the shops to pick up some provisions, I’ve not spoken to anyone.

The upside is that this has been concerted and focussed quality time, without distraction, without the clock ticking as it does on his weekend visits when no sooner have we unpacked than we're thinking about the following day and packing up to go home.

The holiday didn’t start off terribly well when Ross’s mum packed just a handful of nappies instead of two weeks’ worth.

You can’t buy nappies for a 15-year-old in a supermarket, they have to be ordered. So when I contacted the manufacturers and parted with an exorbitant £56, next day delivery turned out to be three days’ delivery once the nappies had travelled from Telford to Dorset, back to Telford and onward to East Sussex because the telephone operator mistook a BN Eastbourne postcode for Bournemouth’s BH postcode.

For Ross, his staple daily activity is sitting in front of the laptop working his way through a collection of YouTube videos; Thomas the tank engine, Barney, Mr Men, Postman Pat, using the mouse to play scenes over and over again. He will sing along to the songs, laugh at the images and sometimes cry at some of the sketches while using the Google search engine to type in the video he wants to play next.

This is Ross’s way in his unfathomed cotton-wool world of controlling his environment and making his own choices. It may seem dull, boring and even overly repetitive, but this simple routine provides him with a challenge, offers a sense of order and gives him the power of choice. What we can never truly know is what is registering in Ross's brain. 

Every day we’ve hit the seaside; playing on the stony beach, paddling in the sea, or sitting on a blanket, leaning against the groynes to read stories or throw a ball.

We’ve read together too. Ross will point to words and ask me to read them to him; sometimes he has tried to read himself. He can’t annunciate the words, instead he imitates the sound of the word - again whether Ross understands the meaning of the word, matching it to the image, or whether he knows the order of words by memory remains unclear.

Success has been Ross grabbing my hand to count to 20 by high-fiving, reciting his ABC, or trying to sing “Three Blind Mice”.

Success on this holiday has also been shaving Ross for the first time.

For the last couple of years, shaving has been a constant worry as we slowly prepare our son for adult life – only recently I have managed to cut his finger and toe-nails without a struggle. Going to the hairdressers can also be awkward, especially when clippers are applied to the back of his neck, but by and large we get by thanks to the patience of the ladies at the barbers he goes to in Warsash.

We once thought about electroylsis treatment to stop the facial hair growth. Ross’s mum also bought a new electric shaver for him, as yet unused. But then last week, in a moment of bravado, I tried Ross with my razor, lightly running the back of the razor across his top lip to see how he reacted. Rather than recoil, Ross smiled. It was an unexpected positive reaction since I fully expected him to fight at the sight of the blade.

We repeated this practice at bathtime on a couple of occasions before turning the razor over and letting the blade skim off the hairs on his top lip. Again, no recoil. A major result. So now we have been doing this nightly. I can't imagine Ross ever shaving himself, even with an electric shaver, but maybe this is an opening which can be exploited.

A small moment, maybe, but a huge, huge victory. Up until now we’ve been applying a lady’s hair remover cream to get rid of Ross's unwanted facial hair, but from this simple moment is a building block which can act as another foundation for his future.

With Ross, life is constantly about small victories and overcoming adversity. In the real world they are all part of life's natural progression, recordable milestones which are reached and passed with barely an acknowledgement. Here, those milestones are richly savoured and used as momentum towards the next step.

It is hard at times because at the age of 15, Ross should have been playing with his friends during the summer holidays, getting excited over Dr Who, Top Gear or the start of the football season, preparing for year 11 at school and his GCSEs. Instead, he lives in a dream world and an uncertain future in which he requires constant attention. A world where few people understand why that child is walking awkwardly down the street with his fingers stuck in his ears.

Just now as I’m writing this blog, Ross grabbed my hand encouraging me to sit down on the floor with him while he is watching a Spot video on his laptop. This one is Spot telling the colours – up pops a colour with its name emblazoned on the screen. For Ross, we’ve recited the letters of each of the colours, and he’s just tried to say the word.  “Grey” was “day”, but it's close enough. It’s a far cry from where he should be, but then you try not to think about that.

It's a meaningful victory and for Ross I hope he feels he is communicating, that he is getting the interaction and responses he wants. It must be very lonely at times in that world he inhabits.

Yet with all of these travails, when you look at Ross's sweet, cherubic face, with the long eyelashes and his winsome smile, Ross is special. 

I love it when I see Ross swimming. He is in his element, engaging in a media where he is an equal with others; Ross can swim - not quite front crawl or butterfly, more doggy paddle and kicking off his back, and he is happy lazing about in the deep end. He loves to be thrown in the water and then to swim back to you, slipping his arms around your neck and giving you a cuddle before the next effort. For a son who has never ever told you he loves you, this is the next best thing.

Because there is one key factor about Ross how, unlike everyone I have ever known, he never lets you down. Life is frequently about disappointment, expectations shattered often by the thoughtless actions of others. I can always rely on Ross. He may be autistic, but his personality remains reassuringly uncomplicated, permanently reliable.

Yes, Ross can be enormously frustrating at times such as when he woke up at 3am three mornings last week to have a chat. You groan when he spits out food he doesn’t like, when he suddenly stops walking and drops to the floor in the middle of a shopping centre, and even his latest, frustrating habit of releasing his bowels in the bath. Yes, nice one, and stinky pooey nappies don't get any easier after all this time.

We live with the constant Damocles’ Sword of Ross’s epilepsy and a worry of what the future holds for him as he moves into adulthood. Somehow, those fears have to be parked. Deal with today and work towards tomorrow. He's started cycling at school and now the challenge is to find a tricycle, somewhere to store it, so that he can enjoy cycling at home.

But that is Ross. There’s not a vindictive, malicious bone in his body; just endless fun and energy. Why can't everyone share those traits? 

Sometimes I’m glad he is blissfully unaware of the terrible travails facing our world, that he is ignorant of the self-induced and sometimes mindlesss pressures facing teenagers, that he is sheltered from the outrageousgreed and stinging meanness which is rife in this time.  Instead, Ross lives in a protected, coveted environment.

Ross’s love is unconditional so when you reap those precious wins, such as with the shaving, such as with Ross singing “Three Blind Mice”, and when in hospital 14 months ago just after recovering from a major epileptic fit when he started writing words on Google for the first time, then those priceless moments are ones to cherish. http://peekay-passingshots.blogspot.co.uk/2011/06/now-tell-me-theres-god.html

At the end of the day, Ross will often come and sit on my lap, put his arm around my neck and pull me close wanting a kiss on the cheek before going to bed. You know what, it really doesn’t get better than that.