Dr Ambusha looks at me like he’s waiting for me to say something, but I don’t know what to say. I look over at Jemma and she has tears in her eyes but her lips form a wide smile. She meets my eyes, grips my hand and then turns back to the doctor.
‘Thank you so much. It’s wonderful, isn’t it, Jake? We’re so happy, aren’t we?’
I nod my head slightly but don’t say anything. I don’t feel happy. I really thought I would. When I pictured this moment, I thought my reaction would be just like Jemma’s. But it’s quite the opposite. I’m strangely devastated.
‘It can be a lot to take in. I have to say I don’t like slapping labels on children of Alfie’s age, but I think ultimately it’s all about giving you a greater understanding and enabling you to feel confident to adopt the suggested strategies. I’ll give you the details of some support groups and also refer you to a specialist for the intrusive thoughts. Hopefully, Alfie, and you, will start to get the help you need.’
Jemma looks at me again. ‘Thank you. We’re so grateful, aren’t we, Jake?’ When I don’t respond, she turns back to Dr Ambusha. ‘We’ve waited such a long time for this. For so long we’ve been judged and dismissed and told we’re just bad parents. So this is amazing, it really is. Thank you.’
Except it doesn’t feel amazing. When I first read about PDA, I felt relieved. That there was a reason behind Alfie’s behaviour. That I wasn’t entirely to blame. In many ways it’s been liberating – researching the symptoms to understand him better, adopting the strategies – but hearing the ‘official’ diagnosis, I suddenly realize I’d rather it was my fault.
I don’t want my son to have to live with this for the rest of his life. I don’t want the tiny challenges everyone has to face on a daily basis to be like mountains for him to climb. There are enough bloody mountains in this life as it is. Will Alfie ever get married? Have children? Will he ever find anyone who can understand him, who can see beyond his condition?
Jemma touches me on the shoulder and I realize she’s already standing up and ready to go.
Dr Ambusha reaches across the table and shakes my hand. His handshake is so much stronger than mine and as I remove my hand, the fingers hurting, I see the photo on his desk. Him and his wife with their three boys. Three tall, strapping, perfect boys.
‘You know, Mr Edwards,’ he says, following my gaze, ‘it might not always feel like it, but there are lots of positives to this condition. Children with PDA are often very creative, imaginative, passionate, determined; they have a great sense of humour. The key is discovering how to channel these strengths to capture their interest, reduce anxiety and promote positive engagement with others.’
I nod.
‘Take care of yourselves. It’s not easy doing what you’re doing.’
* * *
In the car, Jemma crosses her arms, turns her head to the side and sighs loudly in a clear effort to show me she’s pissed off. I’m tempted to ignore it, but I give in.
‘So what have I done to annoy you?’
Jemma makes a noise with her lips, like a horse – I’m pretty sure it means ‘are you seriously going to pretend you don’t know?’ but I wait for her to clarify.
‘Why did you act like such an idiot in there? He’s the first professional who has really listened, who’s finally given us what we’ve been waiting for all this time, and you couldn’t even say thank you.’
‘I just didn’t feel very thankful, Jem. I’m sorry that I’m not jumping up and down in quite the same way you are but I just don’t think it’s wonderful that our son is autistic.’
I deliberately use the exact term, not the acronym, not the wishy-washy ‘special needs’. Those all seem to minimize it, to cover the condition in a soft veil.
‘He’s not typically autistic, Jake. He has pathological demand avoidance. It’s very different.’
I snort. ‘If it makes you feel better to give it a different name, do so, but he’s on the spectrum, Jem.’
‘But we knew that, didn’t we? You’re the one that told me about all the PDA stuff in the first place. I thought you’d accepted it.’
‘So did I.’
‘Look, try to see the positives. Finally, other people will recognize what we’ve been going through and can help us, instead of telling us what an awful job we’re doing.’
I shake my head. ‘You think we’re suddenly going to get all this help, but they can’t wave a magic wand and change him. He’s always going to be like he is. It’s never going to get any better.’
This is our life now. We will always have to prepare him in advance for every eventuality of everything we do, we will have to live our lives ruled by his obsessions, his need to control everything around him. I’ll always feel suffocated and exasperated and now I’ll also feel extreme guilt for feeling that way. Because he can’t help it, and it must be even worse for him, living with that sort of anxiety.
Jemma reaches over and puts her hand on my thigh. ‘It will get better, Jake. They can teach us techniques. They can work with him. I know they can’t change him completely. Of course I wouldn’t want them to. But I’m sure they can help to improve things. Come on, this is a good day. Try to be happy.’
Her hand feels too hot. I want to get out of the car. ‘I’m sorry. You’re right.’
Jemma moves her hand away and looks out of the window. ‘I think we should invite Emily to dinner. To say thank you. Without her, we’d never have got the diagnosis.’
At the mention of Emily’s name, I feel a flutter in my chest. I definitely do not want to have dinner with Emily and my wife. It feels like a test that I’m not sure I can pass. But, God, do I want to see her.
‘Well, um, I’m not sure …’ How can I explain to Jemma that Emily doesn’t want to see me? ‘I’ll ask her. See what she says. I’m sure Alfie would love to see her.’
Jemma fiddles with her seat belt and I already know what she’s going to say next. ‘Perhaps we should do it after Alfie’s in bed. Then we can talk properly without him monopolizing Emily’s time.’
‘Sure.’
‘Great. If you sort out which night suits her, I’ll cook that duck in plum sauce that I do. She’s not vegetarian, is she?’
‘No. That sounds good. I’ll give her a ring when we get home.’
Jemma studies me and it feels like she has Superman’s X-ray vision and can see my rapidly beating heart straight through my skin.
* * *
I try on a selection of tops and then settle on my favourite short-sleeved navy Farah shirt. I run a small amount of some supposed wonder cream through my hair – apparently it styles, holds, nourishes and prevents your hair from falling out – then spray aftershave on to my neck and across my chest.
When I walk into the dining room, Jemma is setting the table using the ‘special’ tableware that we used to use for dinner parties but haven’t got out for years. She is wearing her ridiculously expensive tight-fitting black-and-white dogtooth dress. I know it was ridiculously expensive because I remember sitting in bed with my laptop on my knee asking her why eight hundred pounds had mysteriously been taken out of our joint account. She’d gone red, giggled, taken a shiny carrier bag from the top of the wardrobe and taken it into the bathroom with her. A minute or so later, she’d emerged in the dress and, before I’d had time to give her a lecture about sensible spending, she’d hoicked it up and pounced on me. I can’t help thinking her wearing it tonight is an intentional reminder of that occasion and possibly a thinly shrouded act of one-upmanship towards Emily.
‘You look great.’
At the sound of my voice, Jemma turns around and there’s such gratitude in her eyes that I wish there’d been more feeling behind what I said. I walk over to her and kiss her on the cheek.
‘And the table looks amazing. The food smells delicious. You really didn’t have to go to all this effort. It’s only Emily. She won’t …’
I’m about to say she won’t care about any of this, that she’s not interested
in image or pretence, but I know that will make Jemma feel I’m saying she shouldn’t care about any of this too.
‘Emily won’t expect it, but it’s lovely,’ I continue. ‘I’m sure she’ll appreciate the effort you’ve gone to. It’s a really thoughtful gesture. Thank you.’
I hug her and then help her to finish laying the table.
By the time Emily arrives, I’ve worked my way through my first beer. She knocks on the door and Jemma almost leaps off the sofa.
‘You stay there. I’ll get it.’
I’m not sure why she’s so desperate to get the door, but I’m more than happy to avoid an awkward conversation with Emily in the hallway.
‘Welcome. Come on in. Can I take your jacket? Do you want a glass of wine?’
Jemma sounds like she’s on a first date. I want to tell her to rein it in, not to sound so eager to please.
‘Thank you. I’m driving, but a soft drink would be great.’
It feels weird to hear the sound of Emily’s voice in our house again. It makes me realize how much I’ve missed it. I didn’t think she was going to come. She didn’t answer her phone at first and then when she did, she seemed desperate to hurry me off the line. When I told her Jemma wanted to make her dinner to thank her for all her help with Alfie, she went quiet and I thought she was using the time to fabricate an excuse, but then she agreed to come.
‘Schloer?’
‘Perfect. Thanks.’
They walk into the kitchen and I can just about hear snippets of conversation – about the weather, the food, how lovely the house is. I can imagine it’s killing Emily, with her aversion to small talk.
When I join them, Emily is sitting at the breakfast bar with her back to me while Jemma puts the finishing touches to the meal. Emily’s wearing skinny jeans and a grey turtlenecked jumper and it makes Jemma look like she’s dressed for an interview.
‘I was just about to call you. I’m plating up,’ Jemma says.
Emily looks over her shoulder and, for a minute, it’s like Jemma’s not even in the room. ‘All right, Jake?’
‘Yeah, I’m OK. It’s nice to see you.’
Before Emily has a chance to respond, Jemma takes off her oven gloves and strides through the middle of us carrying two plates of steaming food.
‘Right, dinner’s served.’
At the table, the three of us exchange uneasy glances, as if we are all waiting for someone else to be the first to talk. After a while, Jemma accepts the challenge.
‘So what sort of things did you two get up to while I was away?’
‘Uh, well, we didn’t see each other much as you were working, weren’t you, Jake?’ Emily looks over at me and her eyes seem to be pleading with me to help her out.
‘Ships that passed in the night.’ I laugh awkwardly.
Jemma’s eyes dart from me to Emily. ‘I meant you and Alfie.’
Emily’s face turns a telltale red. ‘Oh, sorry. Of course. Well, as you know, with Alfie, it’s all about the Lego really.’
Jemma nods, finishing her mouthful. ‘Yep, he loves that Lego.’
‘We started making these stop-motion films. It was just for fun, really – they’re not exactly masterpieces – but he seemed to enjoy it.’
‘Yeah, he’s shown me all of them. About fifty times.’ Jemma laughs but there’s more than a hint of hostility in it. ‘Like you say, they’re not going to win any film awards, but he’s proud of them.’
For a few minutes, none of us speak. It’s so quiet I can hear myself chewing the duck. It’s perfectly cooked, of course, and the sauce is as good as anything you’d get in a restaurant. It puts my roast to shame.
Jemma sets down her cutlery. ‘So we invited you here to say thank you for helping us to get the diagnosis.’
Emily holds up her hands and shakes her head dismissively. ‘You really don’t have to thank me. I just happened to be watching the right programme at the right time.’
‘And you managed to convince my stubborn husband here to consider it. That’s no mean feat, I know. I’d been trying to tell him something wasn’t right since Alfie was a baby.’
Emily shifts her weight in her seat and offers an awkward smile. ‘He didn’t listen to me either. I think I just planted the seed, but like Alfie, you’re not going to be told what to think, are you, Jake?’
I can physically feel the animosity in the room building and I can’t help feeling I’m the target.
‘Mind you, you are quite impulsive, aren’t you?’ Jemma says. ‘You tend to jump on new things, get all excited about them for a short time and then forget about them weeks later. Hopefully you won’t do that with the PDA stuff though, of course.’
What Jemma’s saying doesn’t even make sense and I wonder what point she is trying to make. ‘No, I don’t.’
‘You do. Like paddleboarding. I spent all that money on getting you the equipment and then you only went about twice.’
‘I just never had any free time.’
‘And Breaking Bad, remember how obsessed you were with it?’ Jemma turns to Emily. ‘Seriously, he was like Alfie, going on and on about it. We had to watch an episode a night without fail, didn’t we, Jake? Then suddenly you just gave up on it.’
‘The third season wasn’t as good,’ I say, exasperation making my voice louder than I intended.
Why is she being like this? I don’t understand. But as soon as everyone has finished their food, I look for an out.
‘I fancy going out to build a fire. If either of you want to join me, you’re very welcome.’
The two women look at each other, waiting for the other to either accept or decline my offer first. Finally, Jemma shakes her head.
‘I hate the cold. And let’s face it, you’re not the best at lighting fires. Do you want dessert, Emily? I’m afraid it’s shop-bought, but it looks pretty good. Chocolate cheesecake?’
‘Sounds great, thanks.’
‘Jake?’
‘I might save mine until later, I think. I’m stuffed.’ I rub my stomach in the universal gesture of being full. ‘You ladies enjoy.’
Then I’m out of there, terrified about what they’re going to say to each other while I’m away but desperate to escape.
After about twenty minutes, Emily comes out to join me. She sits down on the bench opposite me by my meagre fire. Within a few minutes, her teeth begin to chatter, like those wind-up plastic mouths.
‘I’m sorry, my fire’s shit. I’m trying my best. Do you want to go back inside?’
Emily shakes her head. ‘You need to stop putting that wet stuff on. It’s just dampening it every time you start to get it going.’
‘Well, I didn’t know you were such a fire expert. Here you go.’ I hand her my pile of kindling, twigs and newspapers.
‘There’s a lot you don’t know about me.’ She rolls the newspaper and places it carefully on the fire, followed by the kindling, tossing the damp twigs on to the decking. The fire starts to blaze.
‘So what other delightful things was Jemma saying about me while I was out here?’
‘Nothing. It’s not all about you, you know?’
‘I know. I just thought …’ But then I see from Emily’s face that she’s teasing me.
‘We were just talking about Alfie. The PDA. Nothing bad.’
I poke at the fire with a stick and it immediately starts to fade. ‘You know, I’m scared I’m not getting things right with Alfie without you around. I keep thinking, What would Emily do? But I’m nowhere near as good as you are with him. He misses you. I mean, Jemma’s trying. She really is. But he misses you like crazy.’
And so do I.
‘I’m sure you’re doing a fantastic job. I’m no expert. I guess I just tried to give him the benefit of the doubt whenever I could. But you know what you’re doing.’
‘I hope you’re right.’
‘I’m always right, remember?’ And there it is. Her beautiful smile. ‘Besides, the diagnosis should help. You should start getting t
he support you deserve.’
I nod and I can tell by Emily’s face that she knows exactly what I’m feeling without me saying a thing.
‘It’s not a life sentence, you know? Yes, he’ll always have the condition and it will bring with it its challenges, but it also makes him amazing and driven and sensitive. He’ll see the world a different way to other people, but it might just make it all the more beautiful.’
I love how she sees Alfie. I always want to see Alfie through her eyes.
‘I’m not sure I’m the right person to be his dad. When we got the diagnosis, part of me was gutted for him, but I think a big part of me was also gutted for me. I’m a selfish arsehole, Em. He deserves someone like you.’
‘Probably,’ she teases. ‘But he’s stuck with you, so you best stop feeling sorry for yourself and see that you have an amazing child, diagnosis or no diagnosis. He’s the best kid I’ve ever known.’
At this, her voice quivers and I quickly change the subject, because thinking about how much she misses Alfie makes me hate myself.
She puts another bit of kindling on the fire. ‘By the way, just so you know, I’m moving.’
It feels like I’m on a free-falling rollercoaster. Despite the fact I don’t see her any more, the thought of her moving away is intolerable.
‘Where are you going?’
‘South Devon. I need a change.’
‘But … I don’t want you to go.’
Emily sighs. ‘I never see you, Jake. Why does it make any difference if I’m around the corner or a hundred-odd miles away?’
‘Because I still want to see you. It wasn’t my choice, remember?’
‘Wasn’t it?’
‘I told you I still wanted to be friends, Em. I didn’t want to cut you out of our lives.’
Emily runs her hand through her hair. She’s let it grow again and, looking at her now, I can’t believe it took me so long to realize how stunning she is.
Saturdays at Noon Page 33
