“Bee, look,” I say, pointing to the laptop I have open on the table. It takes me calling her three times before she looks at me.
“Bee sit.” I point.
She sits on one of the dining room chairs and I lift the headphones off her ears so she can hear the laptop audio, which I have turned right up. Emma Watson twirling in a huge yellow ball dress fills the screen.
“Look Bee, Beauty and the Beast, Bee. You love Beauty and the Beast.”
“Falls down a hole!” She shouts.
“Yes Bee, that’s right,” I say. “Gaston falls down a hole.”
She knows the cartoon movie off by heart as it’s one of her favourites. She can, and does, recite it word for word, complete with fierce facial expressions when she’s re-enacting the part of the Beast. Of course she doesn’t look fierce, she looks cute. Achingly so.
“Would you like to go and see Beauty and the Beast at the movies today Bee?”
“Ma Cherie, Mademoiselle,” she starts to sing. It is the opening line of the ‘Be our Guest’ song.
“I’ll take that as a yes.”
I play the trailer of the film for her so that she understands what we’re going to see. She puts it on repeat and watches it over and over. This is a good sign, it mean’s she’s interested. While she’s watching it I text Albert.
Thanks for the idea, we’re heading to the theatre soon xx
He texts back. Have a wonderful time.
A text conversation kicks off.
Me: Are you ok?
Albert:I’m great Stop worrying about me
Me: Can’t help it, you have a habit of doing heroic, dangerous things
Albert: I’m blushing. You think I’m a hero?
Me: Don’t get a big head, but yes
Albert: That’s totally made my day
Me: Good
Albert: Go. Enjoy your time with Bee. I have plans for you later
Me: Sounds intriguing. Clue?
Albert: Nope. You’ll have to wait and see
The movie trailer finishes and before Bee can lose attention and start watching something else I quickly bring up the cinema’s webpage and show her what it looks like, inside and out. If she has some kind of an idea where we’re going she won’t get so frazzled once we’re there.
When we get there I see other autistic children and their families milling around. There are children of all ages and even autistic adults. It’s nice to see kind, acknowledging glances from people who understand, instead of the judgement we often face in public. I can’t control Bee’s actions anymore than I can control my mother’s. She is her own person, with her own behavioural traits. If she wants to start twerking in someone’s face she will.
With a sinking feeling I realise I forgot to go to the toilet before we left the house. Toilet trips in public aren’t desirable even under normal circumstances. Throw my sister into the mix and they become fraught with difficulty.
“Toilet Bee,” I say. She diligently follows me. There is no way I can leave Bee outside the cubicle while I pee, plus I want to make sure she also goes before we go into the theatre so I lead her into the disabled toilet and lock the door. She goes first, and after I do her pants up and help her wash her hands I give her my sternest look.
“Wait Bee. Don’t touch the door.”
She giggles as if she understands, but I know she hasn’t.
I pull my jeans and knickers down and sit on the toilet, all the while keeping a wary eye on her. She fixates on a movie poster on the back of the toilet door and I think I’m safe. It lasts two seconds. While I’m still peeing she starts fiddling with the lock.
“No Bee.” I hold up a warning finger.
She doesn’t stop, and I hear the ominous sound of the lock click.
“Bee NO.”
Too late. She opens the door and I am greeted by the startled faces of a couple of ladies at the hand basins.
“Close the door Bee,” I urge quietly, squeezing my knees together and smiling apologetically. “Close the door, now.”
She doesn’t of course. Instead she wanders out and smiles at the ladies, who have finished washing a little quicker than probably they intended, and quickly scurry out of the bathroom.
“Sorry,” I call after them. Then I add when they’re out of earshot, “You could have bloody shut the door though.”
I sigh at my sister who looks as if she hasn’t a care in the world. “Thanks Bee,” I say. “I can always count on you to keep my heart racing.”
The cinema is kindly allowing attendees to the special screening to bring in their own food and drinks, recognising that so many autistic children have very clear likes and dislikes. I have brought Bee’s favourite snacks with us, but decide I will treat myself to a ridiculously priced coke and a choc top ice-cream. Bee won’t touch either of them. The coke is too fizzy and the ice cream too cold for her. While we wait in the queue I try and remember the last time I was here. For most families a trip to the movies is a fun day out. For autistic children though it can be too much; too much noise, too dark, and too many strange people. It can make them anxious.
I have never been to the cinema with my sister. In fact, I haven’t been since I was a child full stop. The theatre still has that familiar smell from my childhood memories of popcorn and excitement. Or maybe it’s just pee from too many excited children. I’m not sure. There are certainly suspicious stains on some of the seats.
Bee starts to get excited at being around people. She is wide eyed and starts vocalising loudly, flapping her hands and grinning. She leans forward in her seat and fake coughs on the person sitting in front of us. Right on the back of their head, loudly, parting their hair with the force, and then she taps them on the shoulder.
“Hello,” she says. “Hello.”
The lady turns and smiles. “Hi.”
I smile at her gratefully. So many people don’t know how to react around Bee. I know some are just scared of doing or saying the wrong thing, and I know there is a stigma that autistic children can be violent or aggressive. But that’s like saying all dogs are savage. It’s pigeon holing. And it pisses me off.
As promised in the newspaper article, the lights dim but stay on, and the movie comes on at a volume slightly lower than it normally would. Still some of the children immediately rise from their seats and start wandering around the theatre, pacing up and down, spinning and tip toeing. It is interesting to see some of the methods they use for stimming. There are a few theories as to why autistic children stim, but the main one, and the one I think relevant when it comes to Bee, is that it’s a way to self calm when they are facing a sensory overload. Bee flaps her hands and fingers near her face. I see one boy who taps his ears repetitively. Quite a few start rocking in their seats. A few start to express themselves audibly, scripting phrases from movies and TV shows, or squealing and making other strange sound effects. Normally, as a family member, that would be our cue to remove them from the situation, but that’s normally more for the benefit of the people around. It avoids the tuts and the stares that we get. I always feel like telling them that autism doesn’t come with a remote control, we can’t just push a mute or pause button.
Not today. We are all in the same boat today. We all know what it’s like, we all understand, and no one bats an eyelid at anyone else.
It’s incredibly refreshing.
I revel in the fact that Bee seems to be enjoying herself. She still wears her headphones because they are like a security blanket, but she can hear the movie and she knows every single word. I marvel once again at her memory, but I also feel the usual sadness that she knows all these words, and can recite an entire movie, but she cannot have even the simplest of conversations with me.
She sings along. When her favourite song, Be our Guest, comes on, she climbs onto my lap and sings at the top of her voice. She grins broadly at me, and I feel like my heart might explode with my love for her.
Albert
“Where’s Maddy?” Mum asks, fussing
with my sheets as usual even though they are perfectly fine, she just needs to feel useful.
“At home. I told her to spend some time with Bee.”
Mum makes an ‘aww’, sound. “She’s such a good girl, looking after her sister like she does.”
“Maddy says that’s just what you do for family.”
“Wouldn’t the world be a better place if everyone felt like that.”
“Mm.”
“Are you ok?”
“Yes.”
“You look a little flushed.”
“It’s hot. They turn the heat up so high at night it’s like a sauna.”
“It is rather hot,” she agrees, looking up at the ventilation hole in the roof where the hot air pipes out from. She feels my forehead. “It’s warm,” is her verdict.
“Good. That means I’m alive.”
She gives me a soppy look. “Don’t joke. Oh my boy, you gave me such a scare. When I got that phone call it felt like my world stopped turning.”
“Sorry.”
“You should be. You’ve given me more grey hairs.”
“Where’s dad?”
She turns her attention onto a bouquet of flowers on the table beside my bed, fussing over them. “Oh look at these poor things, they’re wilting in this heat.”
“He’s avoiding me, isn’t he.”
She pulls the flowers out of the vase and sniffs inside. “Thought so. Only a smidgeon of water and it’s gone rank. I know it’s not the nurses’ job to replace the water but still, these aren’t cheap flowers by the look of it. Who were these from again?”
“Uncle Fred and Aunt Marge.”
“That was nice of them.”
“It was.”
She sighs. “It’s not that your father is avoiding you, it’s just he hates hospitals. He has a lot of dealings up here with his job, and none of them usually any good.”
“It’s ok. Doesn’t bother me.”
We both know this isn’t true.
If I’d thought my coming close to death might shock my father into realising how much he’s actually, deep down, fond of me, I was mistaken. I’m fairly sure he visits only because it’s expected of him and when here, sits in the corner reading his paper until an acceptable length of time has passed and he can leave again.
“Can you open the curtains?” I ask quietly. “I like to see the stars.”
She opens them and switches the big light off, leaving the room dim.
“You can get going if you like,” I say.
“Not yet.”
“You’re not in a hurry to get home to him are you?”
She gives me a wry smile and changes the subject. “Is Maddy coming up later?”
“I’m not sure. Can you pass my phone? I might check on her.”
She opens the drawer on the bedside cabinet and lifts out my phone. “You care about her a lot don’t you?”
“I love her,” I state simply, shrugging my shoulders lightly.
“And she loves you too, I can tell that by how she looks after you. I think it’s wonderful, what you two have.”
“Yeah I’m thinking about asking her to marry me.”
I say it so casually it takes her a moment to register what I’ve said and then she splutters.
“Marry? Don’t you think you’re a bit young for that?”
I laugh. “Yeah. Probably. But it was funny to see your face.”
She smacks my arm playfully. “You just concentrate on getting better.”
“Yes mum.”
“Good boy.”
“There is something I’ve been thinking about asking her though.”
“Oh?”
“She’ll probably say no. And even if she did say yes we’d have to ask her mother. It might be too weird for her.”
“What might be weird?”
“Well if Maddy can’t leave her sister, which I completely understand, then I was thinking maybe I move in there. With them.”
She frowns. “You don’t think it’s a bit soon for that?”
“Maybe,” I concede. “But this accident has made me realise how quickly things can change. Literally in an instant. I love Maddy. I want to help her, and her mother. And Bee is great, she really is. If I can help them out with looking after her and be with Maddy at the same time it’s a win-win as far as I can see.”
“Oh love.” She tilts her head and looks at me with a mixture of pride and affection. “When did you get so grown up? You have to be sure though. It’s a big thing, looking after someone with disabilities. I’d hate for Maddy to say yes and then in a month or two you decide you don’t want to do it anymore or it’s too hard, because I’m sure it has its difficult moments. It wouldn’t be fair on them. You have to be sure it’s what you really want.”
I look at the stars stretched across the sky. So endless and magnificent.
“I’m sure.”
Maddy
Bee is not herself. She is pale and quiet. Mum also looks tired.
“She had so much fun today,” mum says. “So I don’t want you to feel guilty for taking her. But I think maybe the excitement was a bit much. She’s been missing you, so having you back to herself and seeing her favourite movie on a big screen all on the same day has probably just left her more tired than normal.”
“Yeah I think you might be right. Why didn’t you tell me how much she was missing me?”
“Sore head,” says Bee.
“I didn’t want to worry you, but she’s not been sleeping well and she keeps looking for you at the window.”
It’s the first time in her life that I haven’t been here, so of course she’s noticed. It doesn’t take much of a change in routine to upset Bee, and my absence is a pretty big change.
“Sorry Bee,” I say, cuddling her. “I was looking after Albert.”
“Oh I go demented,” she says.
I look at mum. It’s a new one to me.
“Beatrix Potter, I think” she shrugs.
We eat dinner. Bee shakes her head in refusal more than normal and I can barely get her to eat anything. Her face is fretful, and she won’t let me out of her sight. She flaps her hands constantly and follows me everywhere, even when I go to the bathroom, so I toilet with the door open.
“Sore head,” she says again sorrowfully. “Ouch.”
I get a text from Albert asking if I’ll be back in tonight. As much as I want to say yes, I can’t. My sister needs me more than he does right now, so I text back and tell him Bee isn’t well and I need to stay home, but I’ll be up to see him in the morning.
I get a sad face emoticon back. I miss you, he says. But I understand. Hope you guys had a good time at the movies and that Bee is ok xx
We’ve all been in bed barely half an hour when I hear mum yell out. I run to her room and she has the light on. Bee is convulsing on the bed, her lips blue and her eyes rolled back. She is jerking, her hands and wrists twisted like claws.
“It’s a bad one,” mum says.
“Call an Ambulance?”
“Not yet. Let’s give her a minute, see if she comes out of it.”
I drop to the floor beside the bed. It’s the most awful, helpless feeling in the world to see my sister like this and to not be able to do anything to help.
“We’re here Bee,” I reassure her, trying to keep the panic from my voice. “It’s ok baby girl, Mummy and Maddy are here.”
She continues to jerk, her body rigid. I hold her hair back from her face so I can watch to make sure she is breathing. Her tongue is lolling in her mouth and I worry as always that she will choke on it. She takes a sharp breath through her nose, then another one.
“That’s a girl Bee, keep breathing. Good girl. Mummy and Maddy are here.”
Mum rubs her back, frowning.
“How long has it been?” I ask.
“Not long, a minute maybe? Two? I called you as soon as it started.”
I feel completely powerless and I see it reflected on mum’s face. The person we love most
in the world, her skin white, the tendons in her neck taut and stretching as her face cranes upwards, and there is nothing we can do to stop what she’s going through. I wouldn’t wish this on my worst enemy.
“It’s ok Bee, it’s ok girl. Mummy and Maddy are here.”
Another ten seconds pass but it feels like hours, then something changes and she stops jerking. I register the moment she comes back to us as her eyes try to focus and she frowns and starts to whimper.
“Hey Bee, it’s ok baby, we’re here. Just breathe.”
She blinks rapidly and tries to get up but we hold her down gently. She is always weak and disoriented after a fit. She takes short shallow breaths.
“Big breaths Bee, come on. That’s a girl,” Mum tells her.
She starts to moan and tries to speak but nothing that comes out of her mouth makes any sense. We straighten her body and roll her onto her side. Mum rubs her back while I gently rub her forehead. We reassure her that we are here and that she is ok.
It is all that we can do.
Mum calls work the next morning and tells them about Bee and they give her the day off. She is quiet and complaining of a sore head, but she is ok. Or at least she will be. Right now she is sad and understandably feeling sorry for herself.
“Go and see Albert,” mum says after I finish clearing the breakfast dishes. She has intuitively guessed I am torn between my sister and Albert. She and Bee are snuggled up together on the couch, a blanket over them. Bee is watching Noddy on her MP3 player.
“Are you sure?”
She nods and pulls Bee in tighter, kissing her on the head. “Yes. We’re fine. Honestly.”
“I’ll just go for a little while,” I say gratefully, grabbing my keys from the bowl. “But I’ll have my phone on so if you need me just call and I’ll come home straight away.”
I am tired but I can’t wait to see Albert, and I almost break into a run the closer I get to his room. It’s been twenty four hours since I’ve seen him, the longest since his accident.
“Miss me?” I ask loudly as I burst through his doorframe.
He’s not there. His room is completely cleaned out. No sign that he was ever there. Even his name has gone from the door. At first I get excited, thinking maybe they’ve discharged him. But then I realise that he would have let me know if that was the case. So I figure he’s been moved, like they’ve mentioned might possibly happen as his condition has improved.
Differently Normal Page 17
