I love you, but...

It takes her a long time to get ready for bed.

She has rituals to follow; little rules and formalities that must be observed before she can tuck up, balled up like a wombat, her pointy face poking up from her quilt. The usual procedures of course: teeth brushed; PJs on; hair tied up. But there are other rites that would be less familiar to parents not versed in autistic traits as we are: her homemade cardboard flat screen TV must be positioned under her pillow like so (although how she sleeps with it like that I don’t know); her Big Green Vanessa (or BGV) must be rolled up next to her bed; her collection of favourite soft toys must be located and tucked up with her; and finally, she must do her choosing.

Which parent will tuck her up this evening? She deliberates carefully.

“I think… Mum! Mummy can tuck me up tonight!” she declares this as if she has just announced the winner of the Best Actress Award.

I agree that I will tuck her up, and I will be down in a minute. She tromps downstairs to her room, and five seconds later I hear her yelling for me. If I ignore her for a minute or two, she will just yell louder, so I call back that I am coming, and tromp down after her.

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Her tuck up rituals also take a long time. First, she curls up, as she has her entire life, in a ball, looking exactly like a little wombat baby. She has slept like this since she was a baby. When we were new parents, we were terrified by all the advice given to us by the Anti-SIDS brochures, and tried to turn her over, again and again. Babies should not sleep on their stomachs! But she would roll back over and curl up again. We gave up turning her, and she did not die of cot death.

After I cover her, and her big cardboard flat screen and her five or six toys, with her many blankets and quilts, she immediately wriggles them off again, and I cover back her up.

“Cuddle?” she asks, so I lie down beside her.

“Triple Four?” she asks, and we start her deep breathing exercises: a deep breath for four counts, hold for a count of four, breath out for a count of four, repeat. She tells me how many Triple Fours she wants to do, and I comply, knowing that this is the only way she will relax enough to go to sleep.

“Happy Place?” she asks, and I tell her what my Happy Place is for today, a mindfulness exercise that lets her go off to sleep thinking of somewhere happy. She won’t do her Happy Place until I have done mine. She likes it best when our Happy Places are the same, although they are not, always.

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“Don’t go yet,” she pleads. I promise I won’t go yet.

I lie there for a few minutes, and she peeks up from her pile of quilts and toys. Her face is elfin, with large blue eyes fringed with enormous lashes inherited from her father, a button nose sprinkled with freckles, and a smile crooked with front teeth that were chipped from an accident when she was five. Although she is now almost 17, her expression is a combination of impishness and utter innocence. I give her a one-armed squeeze, because although this is a double bed, with all the toys and the cardboard flat screen and the fact that she has been taller than me for at least two years now, I barely fit.

“You can go now,” she informs me, sleepy now.

“Okay. I love you.”

“I love you too, Mum.” I pause. Waiting.

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“But I love Vanessa more than you. I still love you a fair bit though.”

I give her a kiss, and get up from the bed, groaning a little. I still have dishes and washing to do. “Night.”

“Night, Mummy.”

Vanessa. Her best friend. Friend is not even the right word. Passion. Vanessa is her passion. When she says she loves Vanessa, she means it. When she says she loves Vanessa more than me, she means that, too.

Vanessa has been a part of this family now for at least three years. She first met Vanessa at the After School Care program she attends while I am working. I know a lot of people think that we parents of kids with disability spend our lives caring for our kids (and we do), but we also have jobs. When she is not at school, and we are both at work, she is at her After School Care, which specialises in caring for kids with intellectual disability.

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Vanessa is a Panasonic 37-inch 2009 Viera flat screen television. A TX37LXD80A model. Vanessa sits on a trolley, hooked up to an Apple TV. She was not too happy about going to this place, until she met Vanessa and fell deeply in love. Now she can’t wait to go. Every day she is not there, is just a day she is away from Vanessa.

When she is not near Vanessa, she makes Vanessas. At her school, which is a private special school for kids with intellectual disability and autism, she has her own TV trolley upon which rests Cardboard Vanessa, complete with cardboard remote control. Her great joy at school is to wheel Cardboard Vanessa around.

When we go shopping at the supermarket, she insists on wheeling the trolley. In the trolley sits Big Green Vanessa (BGV), a Vanessa made of bits of green paper laminated and taped together. BGV has a big smiley face. BGV loves to be wheeled around. If we are driving somewhere, BGV is seat-belted into the car (for her own safety and that of other passengers).

She has other Cardboard Vanessas at home. She has a Vanessa t-shirt that she got for Christmas. It has a photo print of Vanessa on it, with ‘Vanessa’ printed on it underneath. I had it made for her in a vain attempt to stop her from graffiti-ing her clothing with pictures of Vanessa in permanent marker.

It didn’t work.

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And she also has TV Exactly. Like. Vanessa. After months of nightly autistic meltdowns about how much she missed Vanessa and how desperate she was to have a TV Exactly Like Vanessa of her very own, we began searching on eBay and Gumtree (Australia’s Craigslist) for a Panasonic Viera TX37LXD80A. One Sunday morning, I found one, and without even thinking, without even checking the listing properly, I bought it. It was in Sydney. We are in South Australia. For those who don’t know anything about Australian geography, that is almost 1,500km away.

It was ‘pick up only’. The seller was adamant: he was not going to ship it. Thus began the Vanessa Odyssey, involving a friend’s cousin, buying and then shipping an empty Panasonic TV box to us and then to Sydney, and the friend’s cousin kindly picking it up and shipping it back to us. TV Exactly Like Vanessa ended up costing us more than a brand new Smart TV. And yet because she is not Vanessa — even though she is identical in every single way — she is known as TV Exactly Like Vanessa.

When our daughter is separated from Vanessa, she frets.

What if Vanessa breaks down?

What if After School Care burns down?

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What if another student throws a chair at Vanessa, or hits her?

What if?

What if?

We try to reassure her. If Vanessa breaks down, we will pay to fix her. If she was broken, the staff would call us. Every day that she has After School Care, she approaches the door of the centre with trepidation, calling out to the staff: “Is Vanessa okay? Is she still there?”

“Yes!” they reply, “She’s okay. She’s still there.”

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They all call the TV ‘Vanessa’ now. Everyone does. All our friends and family and school staff know Vanessa. It’s a shared psychosis.

One day, one of the less experienced staff tried to take Vanessa away. Our daughter was misbehaving, and the staff member tried using Vanessa as leverage. The resulting meltdown ended with our daughter in hysterics, and I had to leave work to come and get her. Vanessa is not leverage.

What’s so great about Vanessa? Vanessa is not a glamorous TV. She is over five years old, positively geriatric in electronics terms. She is not internet-capable. Her picture quality is average at best, although it was probably great for pre-OLED TVs. She’s dusty and smudged up from the fingerprints and general crud of dozens of kids touching her every day.

But — try to explain what is so great about the person you love. Quite often it is difficult to quantify, and when you do put it into words, it sounds trite. ‘He has a great sense of humour.’ ‘She’s kind’, or, ‘He makes me feel beautiful’. I say that my husband is the best man in the world, but there would be at least a billion other women who would say that about their husbands. We can’t all be right.

Or maybe, we can. Because I think that love is feeling the necessity of a person. Love is knowing that their absence would be a presence in your life. I once had a dream that my husband of almost 20 years and I were breaking up. “But who am I without you?” the Dream Me asked my Dream Husband. It wasn’t a statement of my dependence, it was a recognition of the gap he would leave in my understanding of myself. I don’t have to understand why Vanessa is beloved. I just know that Vanessa is necessary.

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My daughter loves Vanessa more than me. There are many parents for whom that would be painful, even hurtful. Sometimes, having a child with autism is filled with truths that can be painful. But I don’t feel hurt. Because she always tells the truth.

And the truth is: she still loves me a fair bit.

Do you have a child with special needs? Can you relate to this story? Share your experiences with us.

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