Thursday, 18 December 2014

The Question

I am being asked The Question every day, often multiple times a day.  It is always asked with an eager smile, a friendly outlook and hugely well meant by everyone who asks it.  And so, I respond in kind - with a friendly smile and a conversational outlook.  But without fail, my response always causes confusion, disappointment and, in some cases, discomfort for those who have asked.  But for me, The Question and the Conversation that follows hurts every single time. 

The Question goes like this:

"I suppose your little one must be looking forward to Christmas?  He must be very excited!"

And my answer, without fail, though always with a gentle smile, is this:

"No, I'm afraid not.  Adam doesn't understand what Christmas is.  He has no understanding of what this day means and so no, he is not excited or even aware that Christmas is coming."

In turn, the response often goes like this:

"Oh, but surely he will enjoy his presents!  Children always love presents."

And my reply:

"No, unfortunately presents are very stressful for Adam.  It's a facet of his autism you see.  People with autism often need routine, for things to stay the same.  If something new is introduced, they must prepare for it, practice and their parents must help to manage their stress over the unexpected.  If a present is given to someone with autism, it's often much better if the present isn't wrapped or at least, it's only one present at a time so they can adjust to having something new."

Many people then ask whether or not Adam will "grow into it, perhaps in a year or two?" They need to know that, one day, we will fit into the expected pattern, one day, Adam will behave as they expect a child to do.  One day, we will have a "normal" Christmas.  

This conversation is happening every day at the moment.  Every single day.  And the thing is that the people asking the questions truly and genuinely mean well.  They are happy and excited themselves, or at the very least, they want to share in the joy they presume I must be feeling at this season.  Because of course there are really two times in life when Christmas is expected to be deeply joyful - one is when we are children ourselves and the other is when we have young children around us and so can share in their joy.

But few, if any, people who ask this question understand that it hurts me - and they absolutely do not intend to hurt me or to be unkind in any way.  Many are truly shocked by my response and struggle to understand.  They cannot know that while I absolutely, unconditionally love my son exactly as he is, that I still feel very, very sad that he cannot share in the joy of this season.  And, because I am surrounded by children who are experiencing Christmas in "the normal way" - with excitement, anticipation and fun - I feel sad for Adam and I feel sad for myself, his father and his brother because for us, Christmas cannot be the way it is for many people.  And no, it probably never will.  Oh, I understand that the myth of the perfect Christmas is in many ways a myth sold to us by Hollywood and that many people find Christmas to be difficult for as many different reasons as there are people, but this is a reason I never expected.  All of the ingredients would appear to be there - a tree, presents, young children, it's the perfect recipe....except that, in our case, it's not.

Most parents understand that for the first year or two, Christmas is more for the parents than the child because they are just too young to understand.  But there does come a point at which most people expect that there to be a level of understanding, development, excitement and enjoyment.  Adam, unexpectedly, enjoyed his first Christmas and so did we.  As the symptoms of his autism became more obvious, it also became clear that he hated his second Christmas.  This year, so far at least, he is just oblivious but next week, things could go either way.  It's a very poignant thought for me.

Adam's disabilities have completely changed our lives in ways we never expected.  Each time we come across something new, it takes a period of adjustment and it often hurts as we learn to accept that things are different now.  They're not necessarily bad, they're just different than we might have expected.

I can't help thinking that, this year and probably for many years to come, we're celebrating Christmas in Holland.


Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. 

The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. 

And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned." 

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things... 

...about Holland.

Are you struggling with Christmas and how to help someone with Autism cope with it?  If so, there's a fantastic article on the website of the National Autistic Society and you can find it here:  Ten Ideas for a Happy Christmas

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