I try not to think about futures, about certainties, about “what if?” – those thoughts create waves of anxiety that wash away my ability to cope with the everyday reality of our life. They make it harder for me to prioritise. Sometimes though, I get blindsided and the thoughts rush in. Like recently, during an impromptu trip to the shop after school.
Melon went to take something from the hand of a lady stood behind us – she was holding some coloured paper, Melon thought it was sweets. I asked Melon to stop, and she drifted away to organise toys on a shelf.
I apologised. The lady stood quietly, then said:
“I’ve got learning difficulties. Has she got learning difficulties?”
“sort of, she’s autistic”
A look of hurt and pity passed across her face, then a look of understanding…
“oh, Ok, that’s why she wouldn’t look at me, and that’s why she likes to organise things”
My goodness, she gets it. Is she on the spectrum? Has she lived with autistic people?
“yes, that’s right. She can listen better if she’s not looking, and the organising helps her stay calm”
“my name is jillian. I’m moving house soon. We have to move because there’s only two of us in our home and I’ve got no one to talk to”
Why? Why have you got no one to talk to? What happened to your family, your friends? Are the staff kind to you?
“will the new house be better?”
“yes, I went to see it. It’s bigger and nicer.”
“Do you think you’ll be more happy there Jillian?”
I hope you are, it must be awful to want to talk and to have no one.
“I will. It’s going to be better. Is Melon happy?”
“yes, she is Jillian. Sometimes she gets sad, but she’s mainly happy”
“where will she live when she grows up?”
Pause. All of a sudden there’s a lump in my throat.
Jillian, I don’t know. I really don’t. The truth is, we had plans and dreams for Melon. We built castles in the sky. But they were the wrong castles, they weren’t meant for her. When we got her diagnosis last year we had to let the sky castles drift away. It was tough to let go of them, they were precious to us at one time.
But we couldn’t keep them, we had to move on, we had to let go.
Since then we haven’t built castles, we’ve been living day by day, fighting fires, learning, assimilating. We gather the moments of joy and progress, and form them into a shield that we hold against our hearts, to help us through the difficult times.
“I don’t know jillian. That’s a long time away. It depends how much she can learn at school, and how good she gets at looking after herself”
It’s only recently that we’ve started to think of futures again, to make plans, but this time we’re doing them for Melon, not for us. We get overwhelmed sometimes by the enormity of some of the decisions we have to make – schooling, interventions, where we live….
“well I hope she’s happy like I’m going to be. I hope people love her”
There’s that lump again. Blink away the tears.
“that’s really kind jillian, thank you”.
Jillian – you know what I would LOVE? And this may seem strange to you. I want Melon to be able to do what you are doing right now. I want her to be able to connect, to have some independence, to understand the value of friendship, love and happiness, to have plans and dreams of her own, to seek understanding, to trust.
As we were paying, jillian trapped her finger in the door. She cried, like a little child would cry. I talked her through it, till she calmed down. Then she went off to wait for her bus, a small determined figure, still clutching that little bundle of coloured paper. We headed to the car.
What is going to happen in the future? For Melon, for all of us? We don’t know. All we can do is our best now to help her learn the skills and knowledge to live as independently as possible.
Will she be happy? Will she be loved?
My god, I hope so.
With every fibre of my being.