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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9 comments:

  1. I hope this Christmas brings more happy memories to you. Merry Christmas to you all.

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    1. Many thanks and a very merry XMAS to you. Matt

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  2. Another excellent blog, Matt! We've put some tips for having an autism-friendly Christmas together on Talk about Autism made with help from the members on our community. Hopefully they might help some of your readers: http://www.talkaboutautism.org.uk/page/news/article/index.cfm?articleId=15

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    1. Thanks, Mike! The tips you've put together are really great. I'm sure everyone will find them incredibly useful - us included. Matt

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  3. What a beautiful piece of writing. I have been working with a little 5 year old boy with autism, who is non-verbal, for the last eight months and it has been the most rewarding experience of my teaching career - as well as the steepest learning curve. There are many days when I know that I learn more from him than the other way round, and long may that continue. I wish you and your family a happy and peaceful Christmas together and that, as Kirsten says, many more happy memories are created.

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    1. Thank you so much. And it's wonderful to hear that you are being rewarded so much from teaching a little boy with autism. A very happy XMAS to you.

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  4. what a lovely experience for you all :) I totaly understand, i hav few 'happy' memories (or photos!) of bdays, cristmas, days out (or not) :( Love the honesty of your blog. So refreshing for someone to admit the saddness & struggle & painful other feelings of having ASD child. After 18years of my son being treated so negatively (usually by professionals!), I tire of hearing 'my childs a blessing'. Anyway, Have a Great Christmas that suits you All

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    1. Thank you for those honest words. It helps to know how similar people's experiences are. Have a great XMAS.
      Matt

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  5. I finally figured out that getting my relatives exposed to my son is the best thing for them both. Each time it gets easier and this year was the best ever. Yes, there is space in this world for children to party in their own way.

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