Christmas & New Year 2016
The song goes, ‘It’s the most wonderful time of the year’ and, for the majority of us, Christmas is. But for families who have a child on the autistic spectrum, having fabulous festive fun isn’t always quite so easy.
Here mum Rebecca McAlister shares her experience and asks if we can share a little goodwill to every child this December…
“The familiar comforting aroma of cinnamon sticks, kangaroo burger grease and chocolate covered churros waft through the air to tease us as we wait impatiently freezing, huddling in the queue by the gates of the Christmas market. Eager to participate in the festivity of the season, the atmosphere of the crowd at the gates is electric; young couples smooching, kids shrieking and bouncing up and down, desperate to see Santa. Serene faces staring admiringly at the dazzling Christmas lights which hug every lamp post.
Then the crowd thrusts forward unexpectedly as a middle-aged lady stumbles forward, the glow of a few too many mulled wines reddening her cheeks. Some teenagers laugh. After all, it's all part of the fun, right? Wrong.
The knot in my chest tightens and I dare to look down at my gorgeous ten-year-old son, Luke, who was so excited at the idea of a trip to the Christmas market. Ear defenders at the ready, he is doing so well so far, yet I fear that each extra minute of waiting in the queue and each burst of excitement from the crowd; the shrieks and laughter, the bright lights and entrancing tune of the merry-go-round, will prove crippling to the strain on his anxieties and senses.
The anticipation will build and build, and will eventually build a wall of exclusion around him. He will not be able to participate. The sensory overload will be transformed into a frantic panic and his super-spidey senses will not only tingle, but explode. Then will come the dreaded words:
'No I need to go home, this is too much for me mummy.'
Luke starts to shake and close his eyes. On go the ear defenders and then his little hands reach up to cover the top of them and block out the noise further.
When the gates finally open, the family behind us look on with judgemental stares, tuts and eye rolls. They can't walk past us into the market as Luke has frozen to the spot with fear and cannot move ahead. My paranoia imagines them thinking: 'Why can't he just behave and go in like our children?'
I look at Luke properly, deeply into his eyes, and see what it has taken for him to do this, and the realisation hits me hard. He is without doubt a complete superhero, a little soldier battling every day to try to fit into the pressures of society in a world which doesn’t quite make sense to him. An invasive world which gives him too much information and then treats him like he's the one who's wrong for struggling to cope with it. He has tried so determinedly to overcome such anxieties and to enjoy these activities in a world which doesn't often adapt or make them accessible to his enjoyment.
Don’t get me wrong, my son adores Christmas. He talks about it from the moment he goes back to school after the summer holidays. He talks of that Christmas feeling in his tummy and it is plain to see that what he really longs for is to be part of the spirit of this holiday. He wants to indulge in hot chocolate at the Christmas market; see a pantomime, and admire the 'awesome' Christmas tree lights at Belfast City Hall. He wants to enjoy it all but on so many occasions he just can't. He just can't at times when there is such an overload of sensory stimulation all at once; the lights, the screeches, the crowd; teenagers letting off bangers, stressed and busy workers ruthlessly pushing through the crowd, knocking him sideways out of balance, out of control.
I try to imagine what it's like for him, buried low down in the crowd with the view of grown-ups' backs around him. Darkness surrounding him down there with amplified sounds and lights coming from above, where their heads are. No grasp of what is going on, obsessing about what dangers or risks may be present around us. Like a tiny toy soldier, always alert but too low down to see. Armour at the ready, desperately seeking cover before his safety and senses are ambushed. It must be both exhausting and terrifying to be in constant fight or flight mode when out and about, especially during the festive season.
I get the pressures for everyone at Christmas. People are desperate to be the first in the queue to make sure they get exactly what they need in the shops; others are hyper, buzzing to begin indulging in the festivities. Some are stressed financially, busy workloads turning them into zombies, just going through the motions to make it through the season. I GET IT. I have been there myself, tunnel-vision mode just plodding through the city centre, doing what I needed to get done, done.
Before the diagnosis I was also the parent with a very restricted understanding of my son when arranging ' fun' activities' I thought he should enjoy, telling him; ‘I loved this when I was a child’; ‘But I paid money for this’ or, ‘You’re missing out here'.
I now know that these frustrations missed the point entirely. Luke was not 'being difficult,' it had taken up all of his energy to try to partake in these activities, without the additional pressure of trying to work out why he couldn't just do it, why he couldn't just relax and please his mummy.
The thing is, we all know a little better now and with more knowledge comes a deeper understanding of children on the autistic spectrum. These children are not limited, they simply see the world in a different light, perhaps a more intense light, exposing a superpower that we just cannot grasp. It is our patience, resources and understanding as a society that is limited.
Let’s find a way for kids on the spectrum to enjoy Christmas on their terms, let’s promote this understanding further and at least meet them halfway.
Some organisations have already adapted their programmes to be all inclusive of children and adults on the spectrum and indeed across a range of special needs, reducing the fear of the 'fun' events. Many theatres now host a 'Relaxed' showing of their annual pantomime; with lowered sound effects and lights up in the auditorium during the performance. At the MAC in Belfast, an information session is also available to groups attending the show; demystifying the unknown aspect for the children with facts and visuals. There are also relaxed cinema screenings and priority queuing / free entry for carers across different centres and venues throughout Northern Ireland, e.g. Belfast zoo; museums; farms, W5; Titanic Belfast and The National Trust 'Access for All' cards.
It is a long road, but we are getting there with slow, gradual steps. None of our kids should miss out on these special experiences at Christmas time. So when you're out and about, just be aware that the child kicking and screaming on the pavement may be going through a war that you cannot understand and be kind. Let’s provide all our kids with the best armour possible as they battle to enjoy the Christmas spirit in their own way.