Could Christmas get Isaac’s vote?

I rarely reminisce about Isaac’s pre-school years. In fact, in my more subdued moments I feel robbed of having fond memories, a victim of autism’s indiscriminate nature. Where there are few landmarks to joyously recall; just some shaky ground of part relief, part fear when Isaac’s words trickled then tumbled awkwardly and interaction was intermittent at best.  There are no magical times conjured by a curious crawler and chatty toddler. Comparisons with proud parents as wide eyed as their experimenting offspring sent me into mild torment. They grow up so quickly, people would preach. Cherish it. Really?

Any traces of what could well be warm collections are clouded by what I know now but didn’t then. I shudder at the sheer vulnerability of my family battling with Isaac’s behaviour, blind to what was going on. Holidays and birthday parties in my mind are the stuff of nightmares.

Christmas could so easily fall into this camp; the one before last probably does. When, unlike his peer group, presents were too abstract for any kind of appreciation. Sparkly trees and decorations were invisible or irritating to him. And the XMAS dinner, where sitting with all the extended family, pulling crackers and cracking up at simple and silly word play was as alien to him as the gravy-drenched turkey and trimmings that didn’t pass his lips.

But quite gloriously I have wonderful memories of last Christmas – that stand toe to toe with my maudlin memories of Isaac’s early years. It glows like a diamond in my mind and I am all the more grateful for it.

Christmas 2011 came just shy of a year after diagnosis. A time when the recalibration of our lives was taking shape, if not complete. Crucial to his development and learning was actually our learning. Of him and his mind. And it was this which enabled the Christmas I wasn’t sure we’d ever have. At a time when all the Christmas mores of countdowns and anticipation and present giving still made little sense to him (they do now in an endearingly methodical manner –using them as an information gathering and processing exercise.)

My wife would prove to have the most liberating of revelations at the most relevant of times. Planning for the unknown can be as paralysing for us as experiencing the unknown can be for Isaac. We catastrophise what may happen to such an extent that we end up stuck mentally and stuck indoors.

The elation of being invited to a once-in-a-lifetime Christmas party at Downing Street was swiftly replaced a swirling, spiralling avalanche of anxieties – Isaac not wanting to go in, then not wanting to leave, being in a place seething with protocol, rooms that were strictly no entry, realms of other children roaming, hailing a  taxi in a busy street. Our catastrophising left us on the cusp of not going all together. But we did. My wife had the revelation. We allowed ourselves to not be overwhelmed. To think of how great it could be. How much Isaac’s come on. How we would be denying ourselves and him. How we’d have strategies in place for all eventualities. Maybe what also pushed us in the end was the fact that we were invited as guests of the Special Yoga centre that was soothing and nurturing Isaac so well. Which meant Isaac was invited as he was a child with autism. Not going to ‘number ten’ would have been criminal.

We prepared meticulously of course. Isaac was ‘going to Samantha’s house, which has a black door that says 10, in a black car’. There would be ‘balloons and chocolates and cakes and singing and no bed and no bath’. Father Christmas would be there too, but we didn’t dwell on that – Isaac wasn’t a fan.

It’s a strange sensation, doing something personally historic whilst fretting about Isaac. I only half took in the imposing portraits of Prime Ministers. I breezed through number ten to keep up with Isaac, instead of slowly, deferentially shuffling in. But this day was not about deference, it was a free for all in the best sense of the phrase. A democratic and dreamy event where all the kids could be free and just be.

Isaac loves to scamper around which, despite the grandiose chandeliers and ornate sofas, this slightly creaking, ludicrously vast space practically encouraged. We let him bound around confident that nowhere was ‘out of bounds’ – with no despairing glances from other parents saying Isaac had no boundaries.

The whole party was fantastically autism friendly. Christmas oozed, but only if you seeked it. Bright balloon trees, tinsel, treats were in abundance. Equally there was space, quiet, a floor to lie on, air to breath. A sensitive natural light in side rooms.  There was none of the claustrophobia and sensory intensities of parties that are so punishing for children like Isaac.

In places he’s never been to before, Isaac seeks familiarity. It’s his oxygen for staying serene and composed. Hence the presence of delightful kid-loving adults who he knows so well with their smiley and cuddly personas – from Mr.Tumble, Fireman Sam, to TV presenters – was fortuitous. Samantha Cameron actually played a back seat role, engaging with the children more than the adults. No pomp or greeting.

Many children, with myriad needs, milled about calm but excited. You could practically sense the relief of parents that here, in this monument to law, rules and etiquette, no-one was judging anyone. For parents whose lives must be more exhausting and challenging and upsetting than ours, there was a joy and, perhaps, contentment.

Isaac wanted to know that Father Christmas was there, but didn’t want to see him. Instead we played games in the side rooms with giant, multi-coloured balloons which he adored –  him letting them float up to the chandeliers; me jumping up to grab them. Chandeliers in peril? Samantha Cameron smiled, willing us to carry on playing. By the end, Isaac defaulted to ‘self-stimulating’ behaviour, running up and down the oak walls, intently staring. His version of downtime. And handled sensitively, our time to take him home. Which he understood would be in ‘another black car’, with the promise of ‘trains on the computer’ when we got home.

And in the black car, as we ventured home through a Christmas lit-up London, our faces lit up with euphoria at a party to remember for ever.

I was on the verge of tears from start to finish at this Christmas party that considered its guests exquisitely. For probably the first time since diagnosis, we genuinely felt that nothing could go wrong. We witnessed Isaac have a little bit of the heady thrill of a kid’s party for the first time.

At the last party we’d braved, I was on the verge of breaking down from start to finish – it was cluttered, chaotic and therefore cataclysmic for me and Isaac. And it’s the fear of those cataclysmic episodes that makes us catastrophise forthcoming events. But our lesson – thanks to my wife’s revelation – was to plan for the unplanned, not be scared of it to the point of inertia. That was liberating.

Equally as liberating is knowing that sometimes it’s ok to not go out. We do a risk assessment; too many imponderables mean we can make an informed choice to stay at home, safe in the knowledge it’s the right thing to do.

The upshot?  Leaving the house, for however tiny a trip, will leave us with the memories we’ve so yearned for and will reminisce about for years to come. Whatever’s round the corner.

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Does Isaac need to be flexible for yoga?

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