When the carer becomes the care-ee…

“I’m having a bad day,” texts Martha. When I get home I give her a hug and say, “I think there might be something wrong with your engine, I’m going to have to check your oil with my dipstick,” and she laughs. And then I say the thing that she’s been longing to hear all day:

“Do you want to go to bed?”

This has everything to do with her recharging her batteries and nothing to do with me discharging mine – I will the keep the kids between the ditches for a few hours. Continue reading

The Crystal Haze

I’m sitting on my usual packed commuter bus when this wonderful wisp of a woman comes up the stairs and scans for a seat. She’s like a living, breathing Orla Kiely pattern. Lovely, but full of notions.

The only seat left is beside me, so she wisps over and floats into it. I continue with my usual bus activity: leaning my head against the window and regretting every decision I’ve ever made that has led me to being on a bus at that hour of the morning.

Halfway through the journey another passenger who is sitting a few rows up gets off at their stop. Then Niamh gets up and moves to that seat, not so she could sit by herself (the first class of Irish travel), SO SHE COULD SIT BESIDE SOMEONE ELSE! Away from me. Continue reading

World Autism Awareness Day – Julia

Martha and I planned to have an awesome family, like The Brady Bunch but even cooler, if that’s possible. I would be the dad who enlightened and entertained, somewhere between an extremely hip Pa Ingalls and a self-aware Homer Simpson, while Martha would teach the kids how to eye-roll at their dad’s bad jokes.

Then we discovered that both of our daughters, Ailbhe and Sophie, are on the autistic spectrum. Like most parents, at the start, we only understood autism as a movie trope: social ineptitude married to marvellous maths. ‘No, Aidan, you can’t bring the girls to Vegas,’ Martha would often say. She had a point. They’re not good at maths. We would have lost everything. Continue reading

Fart!

We were at the cinema today watching “Ferdinand.” It was good. By “good” I mean that it was adequate enough to keep my ten-year-old autistic daughter, Sophie – who is normally agitated at an atomic level – relatively still.

There was one very tender part in the movie, where the entire cinema of fifty-or-so families quietened down and then…

FART!

“Fart does not do it justice,”
She did an arse-raspberry
An extended R-rated trailer
for a poo that was soon to be.
I thought,
“Maybe they won’t know it was her?”
then I saw
that she had lifted up both feet.  Continue reading

Bus Mammy

It’s one of those days that doesn’t know whether it wants to freeze you or fry you. At the bus stop, a murderous black cloud tries to drown me and my fellow commuters. But on the way home, the evening sun, aided and abetted by the magnifying effect of the bus windows, is broiling us alive. I sit, steaming, on the clammy, packed top deck, in the standard Irish commuter position: head against the window, contemplating the misery of existence.

Suddenly, there’s a clenched cry of human anguish. I look up, and it is quickly apparent that a young guy four rows ahead of me is having serious convulsions. For a second, no-one seems to know what to do.

Then a woman two rows in front of the young guy wheels around, although I soon realise that this is no ordinary woman: she is, in fact, a sentient command-and-control centre.

She is Bus Mammy! Continue reading

Jupiter Poos

My ten-year-old daughter does Jupiter poos. While your children are doing their lovely little Plutos, Sophie is releasing toilet-blocking planetoids into the universe. Sometimes, they hang around so long that we have to name them.

I’m not sure if this is something to do with her being autistic, or if it’s some sort of family trait that has skipped a few generations. It’s not the sort of thing you bring up in polite conversation: “By any chance, did Great Grandad Comerford do poos so big that your bum would hurt just looking at them?” “Your Great Grandad, BigShits Comerford? No idea.”

The other night, Sophie made a dash for the toilet saying, “Sophie poo!” in her usual two-word English. A few minutes later she hadn’t come back so I went to check on her. She isn’t quite consistent about privacy yet, so the door was open. “Are you okay?” I asked. She was straining. It’s not surprising; just the thought of her poos gives me constipation.

“Don’t go,” she said. Also, not surprising. If I had to do one of her poos I would want someone with me for moral support. After a minute of obviously painful trying, I finally heard a splash that would put a depth charge to shame. She was relieved. I was relieved.

Then, with a delighted smile, she put her hands in the air and shouted, “I WIN!”

Sophie’s Song

The ten-year-old autistic girl sits at the piano for the first time in her life. She stretches her fingers, and takes a deliberate breath, precisely copying the preparation she has probably seen in a Youtube video.

And then she plays, with feeling, and without fault, her fingers falling on the keys, with such ease, like raindrops. And, as if that weren’t enough, the girl who struggles to speak, who will not hold a conversation, suddenly sings, and holds every note, perfectly. And from Bach to Bacharach there has rarely been a more beautiful melody. And the words she cannot say are finally flowing. And the eyes that will not look at you are brimming with joy.

At first relatives and friends come to see, and eventually she ends up on one of those TV talent shows, and Simon Cowell says, “It’s a big yes from me.” And everyone in the world marvels at this miracle.

That’s the movie version, anyway. The one that reinforces the well-worn trope that autism comes with a gift bag, usually some marvellous, mathematical ability. (After all, fundamentally, music is just maths.) Continue reading