In the year before diagnosis, appointments with a plethora of professionals came thick and fast. But any revealing results were slow in coming and thin on the ground. The only real discovery we made was that one of us taking Isaac was better than both. A distraught child can elicit antagonism between the most harmonious of couples. With screaming and scratching focused on whoever was closest, the other parent becomes as helpless as the advice they are trying to give. A negative vortex of emotions ensue.
My wife did the lion’s share of these trips that were always met with a roar of disapproval from Isaac. Each one a nightmare with everything stacked up clumsily against him. His specific traits that we knew little of then were being completely compromised and this contaminated his mood and sensibility severely. His strict, systemised mind had to deal with variable waiting times, confined spaces, no entry zones, toys he wasn’t used to, toys he was, and toys he had to stop playing with. And his intense sensory seeking was bombarded with bright lights, beeping sounds, buttons, flashes, people milling about and more. (All this was probably even more disorientating to him than the actual therapy, blood tests, occasional scans, lights shone in his eyes, and people testing – or simply misreading – him.)
Isaac would surface from these gruelling sessions puffy eyed, exhausted and sad. This disgruntlement with the world left him out of sync and out of action for the rest of the day. The same can be said for my wife, and on the occasions I took him, me too. At least one of us had been spared, knowing that our presence would have made things worse.
My perceived clarity of these events benefits from hindsight of course. Was it that bad? Most probably. Knowing now what I didn’t then makes it all crystal clear. It also provides something very instructive – that the contrast to the visits to professionals where the environments accommodate him as opposed to alienate him is stark.
We still split activities between the two of us, as much for reasons of time efficiency as damage limitation. And Yoga is an activity my wife has been taking Isaac to that he simply adores. Now it was my turn. I would be taking him to this appointment with a professional on my own.
The instructions from my wife were, as always, deep and detailed. Isaac’s daily schedules need to be carried out to the letter – surprises spell disaster more often than not. That much we know. I absorbed the instructions, fully preparing to apply them consciously. But then I had a thought. And it came from the comparable anxiety and dread I used to experience – when I would at some point physically drag this boy into and out of meetings; him screeching, disapproving people everywhere. What’s the polar opposite of deliberately and forcefully having to navigate Isaac around when he least expects it? Letting him lead the way is.
Something he does with mummy, he knows daddy is taking him this week – why not let him apply his exacting daily schedule to this event he so enjoys. Put him in a position of control. I’d be the flexible one for the yoga trip. Ambitious and daring maybe. But, as I say, the contrast to where we were brings things into focus.
From the moment we pulled up at the yoga centre – that I’d never been to before – Isaac started to orchestrate proceedings in his (currently) clipped tones and precise manner. “Daddy, stop the car please! This is Charlotte’s house! We are going to do yoga now. Daddy can you stay outside, please. Isaac kisses knee. Now we are going up in lift. Okay??” His commentary style of speaking means that right now he resembles a 1950s TV football reporter. With a slightly higher voice. There’s a purpose and momentum to all his discourse. “Isaac, where are we going?” I asked, genuinely baffled by the different doors, stairs and alley ways. “This way, please. Through the door, daddy. To Charlotte, OK”, he said skipping adeptly through a door and up some stairs.
Inside this predictably tranquil and composed centre, Isaac ran into the arms of Charlotte. There was a shared happiness and appreciation that something extraordinarily brilliant and fun was about to happen between them. He took his shoes off in a swift way that I’d barely seen, and slotted them neatly in a box in a way I’d never seen. And then together, Charlotte and Isaac skipped into a room and closed the door. The smoothness and speed of everything left me surprised but as serene as the surroundings.
When, pre-diagnosis, Isaac was being examined or having therapy – or whatever –waiting to hear the next scream was heart in the mouth stuff. Conversely, there’s nothing more heart warming than hearing the giggles and elation of your at-peace son emanating from a room where he’s being stimulated, developed and understood.
After twenty minutes, the door opened and Isaac, with a sublime smile, eyes wide, delighted and fixed on mine, sprinted into my arms. We hugged and I held him tightly, overcome. A five year old running into a parents arms may be an everyday occurrence; probably not when the child has autism though. And whilst Isaac is hugely affectionate (with ‘learned’ cuddles the latest addition to his evolving physical language) this run and hug had a more profound feel – and felt amazing. He ran because he was desperate to tell me about what happened and I sensed that gorgeous anticipation, the connection which was so constrained in his early years. I saw it in his eyes. Charlotte read the situation immaculately, teasing out little questions for Isaac to answer and sow together a little narrative from his session: “What did you kiss Isaac?” “I kissed my knee” “What did you say?” “I said Isaac om..” “How do you feel Isaac?” “I feel fantastic!”
Isaac took me to the big, clunky lift (I remembered that going up in the stairs and down in the lift was the routine) and we waved goodbye to Charlotte. Then barely keeping up with him, we went to the car. And as we drove off, I reminded myself of the disgruntled, out of sorts, sad boy of pre-diagnosis, and then looked at this now calm and collected boy. He was content, I imagine, as much from the yoga as from knowing that his specific plans had been executed with the precision he yearns.
But as with all things autism, I made a note to appreciate the moment and not look too far ahead. A trip to the opticians with all its discomfort, unpredictability and need for Isaac to be flexible is on the horizon.Leave a Reply
This blog will try to be truthful. There will be painful episodes. That are tinged with regret and envy, frustration and the need to forget. Equally posts will talk of promise and potential. My wonder at the workings of my son’s brain. The many triumphs that autism brings. The positive tears.
Because what I want to share is the everyday role autism plays in my life. When it takes centre stage, like the end of term school play with all its associated anxieties. Or when the parts played by a supporting cast of family, friends and professionals inspire, impact or irritate.
And as if to demonstrate the non-linear, ever changing nature of autism, I may flit from the current to any time since diagnosis, in January 2011, and back again. Themes may be revisited. In the colourful world of autism, discipline is never black and white, and always something to discuss, evaluate and discuss some more. Likewise learning and language. Not to mention denial. What about what ifs? They exist and will be personally examined for sure.
My first post is about the organisation, Ambitious about Autism, and more specifically their online resource, Talk About Autism, who’ve kindly agreed to promote the blog within their community and beyond:
When I first heard Ambitious about Autism, I thought ‘what an alluring alliteration’. But this was before autism affected me in any way. The advertising agency I’d previously worked at had done the charity’s branding, and I’d always kept an eye out for their work. I liked what I’d seen. Marketing wise.
So when my son, Isaac, was diagnosed in early 2011, and we emerged from the paediatrician’s meeting drained and drowning in a sea of information, that alluring alliteration rose to my mind’s surface and proceeded to be a lifeboat of sorts.
Eighteen months on and my wife and I are fully immersed in the organisation as Parent Patrons. And it’s Talk about Autism (TAA), the vibrant online community within Ambitious about Autism that has perhaps been most critical to helping us come to terms with Isaac’s autism.
In its most basic form, TAA is a forum (ever so gently) moderated by the brilliantly enthusiastic Mike. Where questions are posed and answered, conversations launched and new people nurtured with the help of the community champions. It’s actually a lot more than that. It’s a safe haven from the everyday assault course of discrimination, generalisations, judgements, ignorance and, well, exhaustion and difficulties, that parents of children with autism battle with (to varying degrees) day in, day out.
The sense of isolation that we feel having a son with autism is quite subtle. Friends and families are accepting and alert. But we can’t expect them to appreciate or even understand the intricacies that can be so defining yet, if handled wrongly, debilitating. Rigid routine, peculiar diet and sensory stimulation are on the face of it easy concepts to digest, right? Wrong.
There’s the Isaac who people see as grumpy, bad tempered, and badly behaved – and therefore unable to sit and interact at a birthday party. Then there’s the real Isaac who we know is disorientated because the room looks radically different to when he was last there, over stimulated by bright lights, noise and a plethora of unknown people – and therefore unable to sit and interact at a birthday party.
In the TAA community, everyone knows that we are living the latter; and that reassurance literally gives us strength. It can also give us answers. Pushing scooters the wrong way, flapping flannels, licking, microwave obsessions, repeating words, requesting that I smile many times a day to confirm I’m happy (because in his specific mind, if I’m not smiling I’m not happy), Isaac’s autism changes from month to month. Someone in the community will always be able to explain or empathise or both.
TAA stretches beyond the forum of course. It acts as a diligent and discerning curator of the multitude of autism information online. A measured number of relevant stories are posted that help us to continue our understanding. Only recently Mike posted a piece that articulated succinctly the difficulty people with autism have with discriminating stimuli. How they struggle to ignore what may be irrelevant because they are visually bombarded by lots and lots of stuff all the time.
This helped me understand – and explain – why Isaac might find himself focussing on a book on a crowded bookshelf as opposed to the big and loud children’s entertainer performing in front of the barely noticeable bookshelf (let alone book). It’s his way of making sense of his environment at that point in time.
And one last point to make about TAA, is that it puts people with autism’s well-being at the heart of everything – by enabling healthy debate. People have different views and experiences. Which will happen with this complex, life-long condition. By listening to other’s advice and choosing to agree or disagree, discount or discuss, we are all moving in the right direction towards a better life for the whole autism community.Leave a Reply