In our house, the C word sends shivers down my spine and makes my blood pressure rise... but it's probably not the one you're thinking of -- that one is definitely banned! This C word is still enough to bring many special needs parents out in a cold sweat and results in a few sleepless nights though... the word I am talking about is 'Christmas'.
When your bundles of joy enter the world, most people have a wonderful vision of what parenthood will be like -- how you'll capture every moment on camera, fill out every section of the baby's year book and spend Christmases savouring every beautiful moment. Not to mention the visits to Santa's grottos, school nativities and all the fun and excitement of the festive season. Now I'm not saying that we hibernate from November to January, but life in our house has meant one or two 'adjustments' to say the least.
We have two beautiful daughters; our eldest is almost 11 and the youngest has just turned 7. Our eldest at the age of 6 became the owner of an ASC diagnosis and the youngest not wanting to be left out quite recently was diagnosed ADHD and MLD. All these conditions come with their own challenges, and my husband and I had to become experts pretty fast!
I love the Christmas season, always have, but as a special needs parent, what I find hard is the 'idea' of what Christmas should be like. We get so caught up in desperately wanting those few days (or weeks as it now seems) to be what society considers to be 'perfect'. Those ideas of perfection often don't include you and your child both in tears before breakfast though, because he or she just can't understand why everything is so different this time of year.
The run-up to Christmas is probably harder to deal with than the day itself; the school 'dress up' days which cause meltdowns because they're 'not normal' (getting your child to wear school uniform can be hard enough)... the school nativity which causes sleepless nights, tummy aches and plenty of tears... Christmas fairs that are too noisy, jumpers that are too scratchy and as for the shops/lights/music this time of year, let's not go there. And sadly, the disapproving stares, 'tuts' and unwelcome comments, handed out freely because your child's disability isn't obviously visible, can be the last straw.
So in our house, we've redefined the perfect Christmas. Shopping is done online, the kids eat what they want for Christmas dinner and we stay home where they feel happy and secure. We have no expectations of them other than to be happy and remember to say please and thank you. I'd be lying if I said it's how I imagined my Christmases would be -- I didn't -- but now, it's more important just to be together and make it to January with our nerves relatively intact.
It's so easy to lose sight of the important stuff; I'm pretty sure that all those years ago in Bethlehem there were no flashing lights, crowds fighting over Black Friday deals or the last parking space. In fact, I reckon that first Christmas would have been pretty perfect for my girls!
So this Christmas, let's remember all those families fighting their own battles, whatever they may be. And when you see that child having a complete meltdown in the supermarket, remember some of those struggles are invisible, so why not give the Mum a smile, and maybe point her in the direction of the wine aisle? ;)
By Michala Dominey