It’s rare I feel this way.
For the most part my daughter and her autism are inseparable. It’s impossible to define where one ends and the other begins. And if I’m honest I’m not sure I want to.
I love her impeccable eye for detail. I love the way she delves into her passions with everything she has. And I love the way she is determined to teach others that life with Asperger’s is a good life.
Her life isn’t always easy, and stress affects her badly at times. She finds the behaviours of others hard and new situations tricky. She worries about things before they happen. But that is just her. Together we plan for eventualities, and come up with solutions.
And mostly it works.
We accept that that is part of life.
But what makes me sad is when it spoils her best days. Special days. Days she cares about.
This week it’s her birthday.
It’s something we plan carefully. Spread out the treats. Open presents as they arrive, rather than wait until the day.
She has her birthday with us, quietly at home. A meal with close family on another day. And a day with her close friends two weeks later.
We reduce the pressure.
Sometimes it works. Sometimes it doesn’t.
Today though, today was the day she was most excited about.
She opened a card containing some money.
She finds spending money hard. The combination of making a decision and getting something new is never easy.
I often ask people not to give her money. I know the stress it will cause
But after nearly three years of saving, she had decided to buy something.
She has been frantically counting the pennies, hoping she would have enough.
A camera was in her sights.
She loves to take photographs, it appeals to her sense of detail, her creativity, her need to create order in the world.
So we went to the shop and collected the one she had dreamed about.
She was anxious but happy.
Anxious that she had made the right decision. But excited to take photographs.
Until that is we got home and the strap was too strappy.
That was all it took.
Her day was ruined. The pleasure gone.
It is that, those moments we cannot prepare for.
The ones that spoil the best days. The things she really wants to do, that I will never get used to.
Because that really isn’t fair.