So there are two important stories that I want to put down here. Maybe one day Jack and Lottie will read them and remember quite how many times I repeated these stories to them.
So for years and years now our family has struggled to carry an emotional cauldron. The source of heat has been shared amongst us but the Jack’s fardel has been the brightest burning. It’s been a long and difficult experience for everyone involved. Tempers fray. Voices are raised. Children shout and swear at adults whilst adults shout and swear at children. Everyone curses. Precious objects get smashed. They might be five people either in tears or beyond tears. And there in the centre of it, always, Jack. Ever since she was Ella. And then since he is Jack. Or Tom. I always liked the name Tom because it sounded like Tim.
Also most especially because the name Tom was a cipher name used by Rosie, my mother, when she used to tell stories to myself and Melissa. Tom and Miranda stories they were called. Now she was a storyteller.
So there’s been an ugly story going on in our house for over a decade. A very common gruesome tale of parents not being able to manage successfully the needs and behaviour of one of their children in particular. Jack has had many years of a sort of anxious insomnia. I doubt that Jack has gone to sleep independently more than one night in 100 over the past years. Every night since he was very very small myself or Saskia have needed to lie down with him, comfort him, tried to find some way to settle him down. We’ve not always been particularly good at that. Impatience comes through. Fatigue has built up. Jack became a cipher him self for things going wrong in our house. Jack can’t sleep. Jack keeps us up every evening. We are so tired.
It must be 10 years ago that we stopped inviting people over to eat in our house. Saskia and I are thought of as a sociable couple. We have a lot of friends. But we gave up bringing people to our house to eat dinner with us because we were so aware of the tinderbox that we lived with. We couldn’t trust ourselves to manage the circumstances and we certainly knew that until we could, Jack couldn’t. Tempers might fray, absurd demands for intention might arise at any moment and we couldn’t face the public humiliation of failing so openly. So we stopped asking people over. And we stopped going out anywhere with our children. Holidays were a horrible thought for me. Going over to somebody’s house to eat with the children became something that filled me with dread at any rate. It might not have filled Saskia with dread but certainly both of us avoided events like this as much as we could. Unable to go as a family, parents with children, into a situation where we just couldn’t manage to carry our boiling pot without it slopping onto the ground. It’s been really exhausting.
It’s been incredibly divisive between us all. Pressures between Saskia and I, between all of the children and the adults. And oddly enough. Sometimes there in the eye of the storm might sit Jack. Jack who would, so it felt, push and push at boundaries until the boundaries gave way. Always creating new territory admittedly. But the new territory strangely enough was densely wooded. Often it had very steep ravines into which one could easily fall. Especially as nighttime came on.
But none of this is the main story.
We’d thought about doing this before but about a year ago, perhaps a year and a half we finally went to children and adult mental health services. CAMHS. We were lucky enough to meet and work with a young woman called Helen Wood. She’s already left her post after having been given funding to progress to doctoral level and qualify as a consultant psychologist. She clearly deserves this because she managed to help us. She’s helped Jack. Right from the beginning, from the very first sessions Jack came out of them with some sort of weight taken off his shoulders. Just in a good mood. Somehow light-hearted. A sort of confidence that he gained. He didn’t talk about what was going on. Jack’s rarely talked about what goes on in his mind. Jack has rarely talked to us about what he does school. Or how he feels about things, about anything. We got a lot of angry words directed at us.
But seeing Helen, somehow the air began to clear. Only for brief periods. But they were there. Some difference was being made. It was reassuring. We’d gone there I seem to remember really because of real concerns about aggression. Because we simply couldn’t manage Jack’s moods. He was flying off the handle about such small things which were descending into such vast arguments and we were lost.
As the weeks moved on and more sessions with Helen took place, Saskia and I attended some of them. Both alone and with Jack. Gradually Helen started to introduce the idea that perhaps some of the behaviour patterns that we were seeing with Jack were elements of ASD, autistic Spectrum disorder.
Yes perhaps, we thought. Maybe. But at the same time what does that mean. We’re just bad parents. I’m just a bad parent. But then yes. Maybe there is something there. We’d thought about it seven or eight years ago. The idea came out in a particularly negative fashion when I might say cruelly to Saskia when Jack was not in hearing (hopefully): he’s fucking autistic.
The idea came up in more positive circumstances when we both wondered if there was something autistic about his behaviour. But those ideas were quashed when we discuss them with some close friends, who really suggested that Jack was just fine really and that we needed to be patient, or perhaps we needed to find a way of managing things better. However we never did. We never did find a way of managing it. We never did find a way of understanding it.
So there with Helen for Jack some difference was taking place some effect to the positive. The effects didn’t last very long. Perhaps on the way back in the car Jack might be chatty almost conversational. And then by the time we got back to the house things may have already started. Somebody needed to use the computer. Somebody else needed to use the phone. Somebody else wanted to watch the television. And there in the centre of it, in the eye of an oncoming storm, Jack absolutely full in certitude that he was going to do what he wanted to do. And really he didn’t give a fuck about anybody else.
I was really worried that when Jack heard mention of the word autism he’d flip. But no. He was quite calm about it. No discomfort. No outrage.
And so over the succeeding months we adults wondered what was happening, what all this meant. Jack actually started to act more autistically for want of a better expression.
Jack has always found it difficult to hug people. He has always put his arms against you rather than around you. He finds it uncomfortable to shake hands, he is someone whose fingers stay limp and he doesn’t easily hold on tight to things. This was accentuated. Something in the way he walked. And then something in his eyes. But it was a relaxing. I experienced it as him relaxing in to the way he was.
At the same time it also almost felt like he was putting it on. That was the potential crash which I do believe we’ve avoided. The sense that both Saskia and I had that Jack was acting autistic. Somehow, and this is so obvious, that he could use it as an excuse for his behaviour. The carrying on. For not changing.
We carried this round like a very dark and brutal secret. Knowing that it was a horrible thought. Yet looking at our now perhaps autistic son. Wondering if it was a cruel act.
But it wasn’t. It isn’t. Certain things aside from what remains of our good sense confirmed this.
In one of the sessions with Helen, or perhaps over several sessions, Jack developed a one-hour routine to help him go to sleep independently, something he had barely ever done. He is 15 or nearly 15 at this point. The routine started at 10 in the evening and involved going up to bed at 10, perhaps some light reading, stopping screens, sitting in the quiet, I can’t remember all of it but it ended at 11 with sleep. The first day after that session with Helen Jack asked us to tell him when it was 10 o’clock. He went up to bed on his own, got on with his routine, and by 11 was fast asleep. My god it was like heaven. The house was so calm. Everybody was able to manage that evening. Children went to bed quietly. Adults relaxed. This went on for two weeks. It felt like two weeks anyway. Every night at 10 o’clock Jack independently starting his routine and going to sleep. And then one day he noticed that actually it was 10:05 that evening. Oh no, I can’t do it, he said hugely anxiously. I can’t do it. I have to start at 10 it won’t work. And from that evening onwards the routine broke down and he’s been unable to re-establish it. Now if that’s not a behaviour within the spectrum of autism I don’t know what is.
And that for me was a great moving forwards.
So on we go struggling with all these doubts. Unable to find a way of navigating these stresses between all the three children and ourselves. Lottie constantly furious with this, unable to deal with the extra attention given to Jack, furious with the way we were unable to stop Jack doing what he wanted to do. Lottie sick of having to give way. Furious with this shouting at us, swearing at us. Spending as little time in the house as she could and furious furious when she was here.
Kaius somehow there in the background younger and also displaying really aggressive behaviour at times but still in a pattern that slightly separates him from the worst elements of the arguments. But at least once, possibly twice or even three times a week Kaius would be reduced to screaming fits of tears as everybody in the house was shouting at each other. Things flying.
And then two events took place over the past two weeks which have allowed me to see a way forwards.
Conversation with Jack.
So one evening I think a couple of days before Jack’s birthday there was a major meltdown and everyone was heartbroken and distressed. Saskia carried on talking to Jack. Saskia and I always have clashed appallingly over how we manage this situation. We both try to curb the worst aspects of the others behaviour and tend often to make things worse in doing so. Although not always. Sometimes the children have needed protection from the fury of one of the parents. This particular evening Saskia was really upset. Late nights leading up to it. Great fatigue. But Saskia was persistent and asking Jack questions – always hoping, like me, that suddenly would make a breakthrough with him. And Jack wasn’t just slamming his door and hiding in his room but was coming out of his room to try and answer the question. But the answers were shouted loud and aggressively and screamed. Saskia’s questions stayed the same. And I was at the bottom of the stairs not involved at this point. And for some fateful reason able to hear what Jack was saying.
A conversation something like this:
Saskia: but it’s just that we want to know what it is that makes you so angry like this, if only we could understand?
Jack: (always screaming) yes but that’s the whole problem I don’t know what makes me so angry.
Saskia: yes but if only we could understand what it was that made you so angry then we might be able to help?
Jack: (screaming) yes but that’s the problem I don’t know what makes me so angry. You just think I’m weird.
Saskia: no darling we don’t think you’re weird.
Jack: (screaming) yes you do. You think I’m weird but you just don’t want to admit it. You’ve got to just accept it and learn to deal with it.
This general tenor of conversation went round and round and round.
I repeated this conversation at the next meeting with Helen, in the presence of Saskia and Jack. For me it was a complete and very naive revelation. Jack gave an absolutely coherent response to what was being asked of him.:
Yes I am weird (yes I have autistic spectrum traits). You don’t want to admit it (you’re not accepting this). You’ve got to come to terms with this and find a way to manage it. The precise nature of autism is that the person with autism can’t manage certain circumstances.
It was a wonderful eye-opening conversation. Saskia hadn’t been able to hear what was being said because she was there in the middle of a fire desperately trying to not get burned.
Conversation with Lottie.
So a couple of days ago, two weeks after a conversation with Jack another meltdown took place in the house. This time, not unlike other times recently, the meltdown has actually come from Lottie. Incensed at the way we manage the situation when Jack becomes unwilling to change his behaviour (in this instance I can’t even remember, perhaps turn the television off or something like that). It was a horrible horrible shouting match that took place that evening. But it ended up, once again, with the ever and capable Saskia speaking to Lottie upstairs and me sitting on the stairs listening.
The conversation went even more viciously round and round:
Saskia: yes but Lottie I don’t know if you quite realise how angry you are with us all the time?
Lottie: (always screaming) yes I know that I’m angry all the time.
Saskia: yes but Lottie I don’t know if you quite realise that actually you’re angry with us all the time, every time you come home.
Lottie: (screaming) yes I know that I’m furious with you all the time absolutely furious.
Saskia: yes but I’m not sure if you quite realise that you’re angry all the time and I don’t understand why?
Lottie: (screaming) yes I know that stop telling me that I know I’m angry all the time but I don’t understand why that’s the problem.
Saskia: yes but you tell us all the time that we dealing with the situation with Jack so badly but what do you expect us to do whatever we do you’re just angry with this.
Lottie: (screaming) I don’t know what to do. I’ve no idea what to do all I know is that whatever you’re doing is it’s fucking useless all the time.
Saskia: but what do you expect us to do then? What do you think we should do?
Lottie: (screaming) I don’t know what you should do. I’m a child all I know is that what you’re doing right now is completely fucking useless. You’re the adults you’re supposed to know what to do. But whatever it is you’re doing it is useless.
So there it was. Answered in black-and-white. Well presented. Neatly spaced lines. Punctuation accurate. Lottie had hit the nail precisely on the head. Not just in a banal fashion (you are adults and I am a child and it’s up to you to find a way of managing the circumstance and not expect me to). It was much more profound than that. Lottie too was saying that we’ve really got to deal with the circumstances as they are.
Conversations with Saskia.
So I’ve listened to my son and my daughter. And they’ve taught me a really deep lesson. And shown me a way through.
And I’m really grateful to Lottie for everything she’s done to help the circumstance. For years when Jack was younger and was being aggressive and violent and nasty because we were trying to, I don’t know, stop him watching the television. Lottie once the argument started, even if she had been furious with Jack in the first place, would take Jack’s side. And get angry with us for the way we were treating him. She protected Jack for so many years in the face of our fury and failure to manage. Our lack of understanding. She’s always stood right by Jack’s side. When we would lose our tempers, me in particular and just say that we were useless parents. Lottie would always say but look at me and Kaius? We’ve got the same parents and we don’t behave like that why are you blaming yourself. And now still Lottie plays games, sometimes when she doesn’t want to, in order to humour Jack. She has tried so hard. And now it’s time for us to help her. Thank you Lottie.
We’re going to treat Jack differently. I’ve told him that. I’ve told Lottie that. I’ve told Jack that. I’ve told Saskia that. And I don’t even need to repeat it to myself. Yes we going to treat Jack differently because Jack actually is different. And is not offended by that. He’s actually comfortable with it not because he’s trying to get away with something but because he does react differently in certain circumstances. We can’t control him. We can’t always stop him doing things he wants to do. He is obsessive about certain things and can’t let go. He’s not being bloody-minded. He just can’t let go. So when we move towards areas of conflict with Jack we’ve all got to develop techniques and a willingness to sidestep the circumstances. Not to drive Jack into a humiliating rage that leaves everyone stressed and feeling like such profoundly failing human beings. Jack is different. We’ve got to work with that difference and recognise and love those aspects of Jack’s character which are lovable. And which are at times different. And which are behaviours which require those people around Jack to manage their needs and desires in order not to bring about a pointless conflict. It even gets to the point of thinking that children who are more obviously different, for example good friends of ours have a son the same age as Kaius who was born with Downes syndrome. Nobody gets cross with him because he can’t speak. Because he can’t communicate in any easy way. Because he can barely hear anything. Because he hits himself with a plastic bottle on his head as he walks around the room and moans to himself. Everybody sees the deeply lovable traits in this little boy. And they love him for how he is. And everybody’s behaviour around him is adapted. We need to do that. We need to allow Jack to be the way he is and not interrupt him with such great emotional disturbances purely and simply because we can’t manage.
And that really is this particular story. When I tell it it is so mundane. And so obvious. But it’s taken me 15 years to get to this point and I feel like there really is some chance of gaining the trust and respect of my children and Saskia. It’s been very hard the past years. I’m really hoping that over the next months and years we can manage to live a little better and perhaps even happier together. All because we just accept that one of our children just isn’t the same as other children.
I have always had a very straightforward attitude towards my oldest child Columbine. I’ve always trusted her to find a way through. I’d lost trust in Jack. I was losing faith. Starting to really question. And now it’s not that I’m thinking there’s an easy answer. But more that everything has to start from accepting Jack as he is.
Here endeth today’s lesson. Let us sing a Him.