Transcript

Basia Cummings, narrating: Hello it’s Basia here, and you’re listening to the Slow Newscast. 

This week, we walk through a door into another world. 

Saba Salman is an award-winning writer who often tells the stories of people who just can’t speak up for themselves. 

And she takes us to meet a boy called Elliott and his family. 

Ian Goldsworthy: Yeah so this is the airing cupboard. So we had to put locks on the airing cupboard because he was eating the foam off the hot water tank. So we’ve got locks on there to stop him doing that. Unfortunately… where the door that he’s pulled off and broken off there, the reason why he’s done that is because there’s a pump in there…

Saba Salman, narrating: Back in July, I wrote an article about the lifting of Covid restrictions, and how some people, disabled people, were being left behind. And after reading my article, a man called Ian got in touch.  

Ian Goldsworthy: He doesn’t like the noise, so he’s pulled the door off so that he can find the switch and turn it off, which means myself and my wife don’t have hot water up in our bathroom upstairs.

Saba Salman, narrating: Sometimes, as a reporter, when you start out on a story, you have a pretty clear idea of exactly where you’re headed. So when I first met Ian Goldsworthy, I thought this was a story about Covid vaccinations and about how hard it is for some people to get them. 

And it is.

We’ll definitely get to that.

But sometimes, the story takes you deeper. 

After I stepped through the Goldsworthys’ front door where Ian, Lucy, and their three children live, I entered another world. A world that millions of us never experience, never see, and never hear.

And I realised that this story was about a lot more than the challenge of getting someone vaccinated. Or keeping an extremely vulnerable person alive as we head into winter. This story is about something much more difficult to hear. 

It’s a story about anger and loss. Love and family.

It’s about exhaustion and really, it’s about resilience.

And I’m afraid quite a bit of it is going to be about shit. And cleaning it up. But it is also a story about a remarkable boy. A boy who just loves to bounce. A boy who is trapped in time. 

I’m Saba Salman, and this week on the Slow Newscast, I’m going to tell you a story about a boy called Elliott. 

***

[Clip: sound of Elliot’s iPad]

Ian Goldsworthy: This is the lounge, and we’ve got Elliot here and he’s just watching his iPad. He likes watching CBeebies. At the moment he’s watching Boogie Beebies which is the programme that he’s been watching. Interestingly, all the programmes that he watches are still the same ones that he watched when he was two, three years old but he’s quite happy so that noise you could hear was him, you know, he hits his hand, he’ll his leg, that’s his way of him just communicating that he’s in a happy mood.

Sometimes he’ll also hit his head, like he’s just doing there just hitting his face, that’s also him communicating that he’s happy. Sometimes the intensity of him hitting himself will change. And that’s him communicating that he’s not happy and obviously he can sometimes really hurt himself if he’s doing that. 

Lucy Goldsworthy: And take your tray out? Elliot do it. Elliot do it. You may well laugh but Elliot can do it. Thank you. Good boy.

Saba Salman, narrating: That’s pretty typical behaviour from a teenager – not wanting to take your plate to the dishwasher – but it’s about the only thing that’s typical about Elliott.

Ian Goldsworthy: I think he’s wetting through.

Lucy Goldsworthy: Do you want to take him up so we’ll change him?

Ian Goldsworthy: Yeah I’ll just go up… Just stay down here, just while we…

Lucy Goldsworthy: We’ll just change him. 

Ian Goldsworthy: He’s just wetting through. Elliott will you come upstairs? We’re just going to sort you out okay? Good boy. 

Saba Salman: So Lucy just to be clear, Ian’s off to change Elliott? What, what is he going to be doing?

Lucy Goldsworthy: So that will be a nappy change, complete, and then he goes into protective clothing because Elliott doesn’t have any recognition of his toileting needs so that he will get into a nappy, whatever he’s done. And we’ll take that out so that he has to, as soon as he gets home from school, once you’ve had dinner, he must get changed and he has to be in like a popper vest, a full-on onesie with the zips up the back and then usually a shirt over the top with buttons because he can’t manage the buttons in order to stop him accessing his nappies. 

Lucy Goldsworthy: We’re changed now? 

Ian Goldsworthy: He’s changed now.

And it’s worth saying as well. The consequences of if he did access his, his nappy during the nighttime, or when he’s not under constant supervision, then you get in there, he’d smear it.

Saba Salman: When you say smearing Ian… what do you…? 

Ian Goldsworthy: He doesn’t have the same revulsion to his fecal matter that you or I might, so he will access it in his nappy and he’s just curious by it, you know and then he’s, oh, well, I didn’t want that on my fingers so it gets spread over the wall, over the bed linen, over the floors which is why he doesn’t have carpet in his room anymore cause then that all got wrecked and ruined which, you know, when you’re shattered and you just want to get off to sleep, to have to strip all the bed linen and do that is less than ideal.

Lucy Goldsworthy: His developmental delay has left him sort of stuck in this loop and he’s about a 15 month old baby and certain things like that, toileting is very much at that level, that age. 

Saba Salman: And yet to look at him… 

Lucy Goldsworthy: Yes, he is six foot four, perfectly physically well-developed so that’s even more difficult.

Saba Salman, narrating: Elliott’s sixteen, and as his mum Lucy points out, he’s six foot four. He’s big, really big. 

He towers over his siblings, over Lucy, and he’s beginning to dwarf Ian too. 

So although Elliott can’t speak, he certainly makes his presence felt.

Across two wintry nights in November, at their home in Potters Bar, I sat down with Ian and Lucy. 

Lucy Goldsworthy: So as a baby, perfectly normal, hit all of his developmental milestones, everything fine, no concerns. I think gradually, I think he’d got to his first birthday and although he babbled, there wasn’t a lot else there and then it gradually, as the months went on, it was a couple of words.

And then suddenly I think he was around about 15 months and suddenly those words completely disappeared. And in the space of two or three weeks, he gave the appearance of being unwell he would hold his head and just something wasn’t right. And he would scream blue murder if you took him swimming, which was one of his favourite things to do. And I took him to the doctors and they said, “oh, it’s a viral infection just give him Calpol,” but he was never the same after that. Lost any of the words that he did have and then Elliott is really very much developmentally, the same.

Ian Goldsworthy: Yeah. 

Lucy Goldsworthy: It’s like he’s stuck.

Ian Goldsworthy: I think for me, what I always remember is seeing him in relation to his peers. I’d suddenly realise oh gosh, he doesn’t know even how to throw a ball or, or kick a ball, or if we’re doing some arts and crafts stuff, you know, he doesn’t understand the concept of what, you know, with dipping fingers in paint and making a splodge and you know, every little thing requires support and it, you know, it felt like that, you know, death by a thousand cuts. 

Saba Salman: And what does that mean when you see friends who’ve got kids the same age? Who are the same age as Elliott?

Lucy Goldsworthy: I mean I’ll see them walk past now going up to school because they’re in year 12. So, you know, they’re doing their A-levels and knowing that that’s chronologically where Elliott should be, you know, every so often, I think you have a day when you think, it really hits you, that reality of just how wide that gulf is.

Ian Goldsworthy: In order to appreciate him and celebrate him for everything he can do and all the things he can do, you have to kind of distance yourself from looking at your friends and stuff but as Lucy said, there were times when you see them and you hear about his contemporaries going on to do brilliant, amazing, wonderful things, or even just bog standard, ordinary, everyday things.

And you think, man, I wish Elliott could do some of that. 

Lucy Goldsworthy: And no one, despite every test under the sun, everything that he’s had done and he’s had over and above what you would normally have, no one can actually find any answers. 

Ian Goldsworthy: Any cause.

Eventually you just have to come to a point where you go, well, we’ve explored every avenue that, that we think we could, you know, we spent a long time work with Great Ormond Street and stuff but none of it has ever moved us any closer to understanding why he is as profoundly disabled as he is. 

When he was diagnosed it was with an autism spectrum disorder because that’s what he was presenting with at the time but I probably made some stupid joke about, oh gosh, well, we’ll have to go and buy a piano or something because all I understood about autism at that time was watching, you know, films like Rainman or something like that and actually you realise that that’s true of a tiny, tiny fraction of the people who are diagnosed with autism and actually the way that Elliott’s life has developed, he could not be further away from that type of life if you possibly imagined it.

Saba Salman: But to the layman how, how would you describe Elliott, and his needs? The profound needs that he has?

Lucy Goldsworthy: I’d say he was a toddler in a man’s body but imagine him, who’s gone through puberty… and all that that entails, that’s where we are. And it’s a very, it’s a very strange dynamic but I think that’s the closest analogy I can give you.

Ian Goldsworthy: Yeah

Lucy Goldsworthy: Really. 

Ian Goldsworthy: If you say autism to someone, they have no idea of what our day-to-day life is like because they think they’ll understand autism. They might think they understand people with autism and having learning disabilities but the extreme nature in which those manifest and the amount it impacts on mine and my wife’s lives and the lives of our other children, that’s very hard to sum up in just a label of a diagnosis because none of his diagnosis, you know, he’s got a boatload of things that he’s diagnosed with just been diagnosed with epilepsy as well.

None of that actually tells you the story of Elliott. He’s got a case of the Elliotts really, and that’s all you can say.

Lucy Goldsworthy: I know. 

Saba Salman: And right now there’s some background thudding going on… c

[Clip: thudding noise]

Saba Salman: Can you tell us what that is? 

Lucy Goldsworthy: That’s Elliott’s normal jumping up and down primarily, that’ll be, jumping up and down, clapping, lying on his bed and just kicking his legs up in the air so much that he lifts off the bed, which is quite a force when you’re as, as big as he is to do that. And you’ll hear that for hours and through the night as well.

Saba Salman: And we were talking about some of the things that Elliott finds difficult and I’m thinking not so much of the health issues, but the ordinary things, going out, going to school, hair cuts.

Lucy Goldsworthy: Haircuts have very much evolved, haven’t they?

Ian Goldsworthy: They’ve evolved. So Elliot, when he was a baby and a toddler, he went to the hairdressers absolutely fine and then he started getting more and more difficult with that around about the ages of five or six, you know, and wouldn’t tolerate going, wouldn’t tolerate anything near his ears or with his hair and he ended up with this awful, you know, mop of curls. He’s got very thick hair that grows incredibly quickly and curls so it’s not easy to deal with and I remember when he was probably about five or six wasn’t he? He had some teeth removed and had to have some dental work and whilst he was under the general anaesthetic to do that, we snuck into the operating theatre and cut his hair which apparently is more common than you’d think. But, you know, we felt a bit weird doing it.

And then after that, we then struggled for a long time to really cut his hair or do anything because he wouldn’t let anyone go near it or do anything and I remember there was one time Lucy had gone away and I was left in charge of the kids and in typical dad fashion, I decided I was going to achieve something in this time and I decided I was going to do Elliot’s hair. 

So I can remember having to have one arm round him in a bear hug to try and keep him still, as he was wriggling to try and do it whilst I’d be using the clippers, you know, shearing him basically to try and get it cut and he’d be biting me at the same time. And would have bitten me so much that by the time we finished, I looked at him, I looked at me, I had scratch marks up and down my arm, teeth marks, I had blood running down my arm, and that was how we did his hair. And it was horrendous. And I came away thinking, oh, I feel more like I’ve done something horrible to my child rather than just the standard, right you’re having a haircut.

Saba Salman: What are some of the other triggers that make Elliott so upset that he behaves and his frustration comes out like this? 

Lucy Goldsworthy: Something might set him off and often it will be, you won’t know what it was. There won’t be any obvious cause, and this is why it’s so difficult. Very often it will either start with, he’ll just hit himself in the head to such an extent that he’ll burst blood vessels in his face, or he’ll bite through his hand. He has a permanent callus on one hand with a complete bite mark, where he just regularly bites through his hand. It’s become… he’ll bite his hand in a sort of more ambient fashion but then he will suddenly just go and it will be full on through, and it’s bitten through the whole hand. 

Ian Goldsworthy: I mean, I know I’ve been guilty sometimes because I’m a teacher and when you’re a teacher, you have your teacher voice, which you use to command the room and to do all that and there could be times when I, you know, I’ll see him doing something, maybe we’ve left a cupboard unlocked or something, and he’s grabbing lots of food or something and I’ll say, Elliot, no. And no is a trigger.

Lucy Goldsworthy: Tone of voice is the one thing that is probably more consistently likely to trigger him but very much you have to keep your voice modulated. The tone’s got to be very, very calm and it may be, you know, I’ve had it before where Elliott’s got me in a headlock and is ripping my hair out but you have to still keep your voice very calm. Elliott. We need to stop this now you’re going into the red zone and we need to stop this now, even though you’re thinking every aspect of you is flooded with adrenaline, wanting to go into, sort of you know, pushing him off you but he is so strong that actually that won’t work and it’s more of a case of you have to keep yourself calm.

And it’s usually a case also that if the other children are around, it’s like right, you leave Mummy now it’s fine, please could you just go into another room, take yourself off.

And they know to do that. That’s not a normal set up, if it ever happens, it’s usually in the morning before school and that’s happened a few times and then they have to go off to school and Elliot will go off to school and everyone will readjust and it it’s, that’s just life.

***

Lucy Goldsworthy: I’ve realised now that I’m monitoring my heart rate. I don’t give any impression that it’s going up but I’ve realised that my heart rate, when I put him on the bus, goes up to about 130, everyday.

And then once I’ve got him on the bus and he’s safely driven off, then I’m back down to about 70. And I don’t give any outward indication that that’s the case but it’s obviously, I’ve got conditioned to being in that sort of state of, this could happen… this could happen. It hasn’t okay.

Saba Salman: All of these stories of your sort of family life, what would you say so far has been the kind of, lowest moment for you both?

Lucy Goldsworthy: I’m not sure if I actually have one event, I think because I’m usually, it’s me the whole time. To me it was just a slow gradual burn of realising increasingly where things were and how difficult things were and every time that Elliott would have another big episode or an outburst, it chipped away at you a little bit more and a little bit more and a little bit more. So I think I got, got to a point probably a lot earlier than you did of just… there’s a deadening where Elliott’s involved that I don’t feel anything quite the same with Elliott, which is why I’m able to deal with him.

A good day is… and we have many of them as well..

Ian Goldsworthy: Most days, most days.

Lucy Goldsworthy: Which is, you know, Elliott is fundamentally, he’s very happy.

Ian Goldsworthy: We have to say as well, as when we’re thinking about this, we’re thinking about stuff from largely three, four, five years ago, we’ve worked very hard and had support…

Lucy Goldsworthy: We really have tried. 

Ian Goldsworthy: … from some behavioral people and I think a lot of it was him going through puberty as well, and those were very challenging years and he’s come out the other side and, you know, we’re back to the point where you have 95 percent of the time he’s absolutely lovely and very sweet natured and aside from his personal needs he’s you know, fairly easy to look after it in that regard, 

He loves being active so he loves going on his trampoline that we’ve got in the garden. He loves going swimming, absolutely adores going to the beach that’s his favourite place in the world to be. 

There is no place that Elliot is happier in the world than being in the surf at Rhossili Bay.

He will run down the dunes to get there, the tide goes out an enormous long way there but he will sprint just across the beach and it’s hard to keep up with him. And he’ll get in the water and he will just throw himself down on the ground, letting the water splash over him with his legs kicking up in the air, just in absolute delight because that is his special place where he adores being… and so days like that are just absolutely joyful. 

Saba Salman: There was one thing I wanted to ask about, which was the bite mark in Elliott’s hand and I wonder if you could describe when that happened, when you tried to put a plaster on it and what happened with that?

Ian Goldsworthy: He won’t let you put a wound dressing on it and there have been times when we’re just trying to put a plaster on because it’s… something that’s, that’s obviously sore and bothering him and, you know, because how could it possibly not… will then cause him to react aggressively again so you end up, ignoring is not the right word but turning a blind eye to injuries and conditions that you would never tolerate in one of our other children or in ourselves. You’d be like, oh, straight away okay we’ve got to get plaster on that, we’ve got to get a dressing on that… well that looks really nasty. We’ve got to get that looked at… We can’t do any of those things with Elliott, he won’t tolerate them and it’ll just make things so much worse if you do it. 

Saba Salman: So what would happen if a doctor came towards Elliott with a needle, a bandage? 

Ian Goldsworthy: So he’s had two big seizures recently and after the seizures, very very sleepy afterwards, an exhausting experience for him to have to go through but even in that moment, when he’s still not entirely conscious and he’s coming around afterwards, you know, like last time the paramedics arrived about an hour or so after he’d had the seizure and he’d been asleep at that time but they couldn’t get anything. I knew they couldn’t do bloods, they couldn’t do blood pressure, even though he was struggling to stay conscious, he did not want these people he did not know doing something he did not understand to him and so he was going to push back against that. No matter the fact that he was already exhausted and struggling to keep himself awake after the seizure.

Saba Salman: But he had it in him to push people away or to make those noises? 

Ian Goldsworthy: Yeah. And to stumble away from them and to go and find a corner to go and lie in. 

Lucy Goldsworthy: He kind of pulled himself up and staggered off all wobbly, and then just sort of collapsed somewhere else but just to get away from them.

Ian Goldsworthy: Hello Elliott. 

[Clip: music playing]

Ian Goldsworthy: Elliott, could you go around the other way? Would you like something to eat, is that what you’re saying? Okay come on, I’ll get him something… 

Saba Salman: I wondered if Elliott wanted to join us and I haven’t seen him bouncing before, you described the bouncing. 

Lucy Goldsworthy: Yes. 

Saba Salman: And that’s a real happy signal. 

[Clip: Elliott in the background]

Lucy Goldsworthy: Yes that’s him… very happy, hebounces along, does a lot of jumping and he’s always done that.

[Clip: Ian talking to Elliott in the background]

Lucy Goldsworthy: We used to call him Tigger because he just bounces constantly but yes, that’s why the whole house you’ll feel reverb because as he’s getting bigger, everything shakes but yeah, that’s just, that’s a happy Elliott.

Happy Elliot can take a lot of work to make sure that he gets the opportunities to burn off some of these excess energy, and also just to have a change of scenery, which he benefits from greatly.

[Clip: music playing]

Lucy Goldsworthy: Don’t you, Mr.

Not up your nose…  

***

Saba Salman, narrating: By the end of 2019, life at the Goldsworthys’ had reached a sort of equilibrium. Elliott had made it through puberty and was generally happy at his special school. Ian and Lucy were learning to calm him down by stepping back – rather than always intervening but then, in March 2020, when the pandemic hit, it began to dawn on them that life was about to get much tougher. Their carefully-managed harmony was about to be shattered.

We all struggled in lockdown but imagine being stuck at home with a six foot four toddler, who you’re desperately trying to keep safe.

Ian Goldsworthy: As a family, we pulled the other two kids out of school. We pulled Elliott out of school. I said, I couldn’t go to work and we stayed inside, you know, trying to limit how we could go out as much as possible, which was very, very challenging. Elliott couldn’t understand why he couldn’t do any of the things that he would normally do.

Lucy Goldsworthy: You know, going to school, going on his school bus, just going to the swimming pool that he would do once a week, all of those things suddenly had gone by the wayside and he couldn’t understand why those things weren’t there anymore. And he would find pictures of cars, pictures of swimming pools, to communicate that these are the things that I would like to be doing.

Ian Goldsworthy: And when Lucy says, you know, he’d find pictures… this isn’t a, he’d find a picture, he’d bring it to you and you’d say, oh, we can’t do that. It would be that conversation repeated hundreds of times an hour, every hour he was awake during the day.

In his bedroom he’s got a picture of a beach because he loves going to the beach and oftentimes he’ll point at that to indicate that, you know, he’d like to go and often we’ll say, no it’s the middle of December we can’t go to the beach… there was one time, I remember him when I was saying, no, we can’t get to the beach and him turning around and attacking me and him getting aggressive.

So the only solution we could find to break that cycle was to take that picture and we had to go and hide it. So in a sense, we were robbing Elliott of his way of communicating what he wanted to do but because that was leading him down to an obsessive behaviour, which was also leading to aggressive behaviours because he couldn’t understand why he wanted to do it.

It’s the days where nothing happens, that he ends up, you know, being more aggressive, being more difficult, presenting, more challenging behaviours. Lockdown was difficult as well because there was no, obviously we had no respite we had no carers. We had none of the other things that we normally rely on to help us.

Lucy Goldsworthy:  Luckily he was able to go eventually back to school, they were able to take some of the children back at his special school.

[Clip: Elliott’s iPad playing

Lucy Goldsworthy: And he was included in that because by that point we were struggling terribly. 

Ian Goldsworthy: And when we decided to send him back we agonised over that decision a lot because we were having to weigh up the comparative risk to Elliott of sending him back to school with the benefit to the whole family. 

We can’t pretend that we weren’t very, very nervous and worried when we had to do that, because we knew that there was nothing essentially protecting him

Saba Salman: What was going through your minds? You’re hearing the news about the increased risk, tell me about what you understood of those risks to people with learning disabilities and autism like Elliott?

Ian Goldsworthy: If every day of your life is faced with the struggle of trying to get Elliott to do basic things and basic level of healthcare, you know, if we can’t put a plaster on him, if we can’t give him basic medication, it’s not difficult to extrapolate from that, that him going into hospital to require treatment for something which is flooring otherwise perfectly healthy people would be a very difficult thing  to do.

So if he were to get it and he got it badly enough that he needed to go to hospital, he would not be able to receive the same level of treatment just practically because of the nature of his learning disabilities.

And there was a chart which I remember coming across, talking about how they score patients when they come into A&E. And.. if you scored above a certain point, then there was no guarantee that they give you a ventilator that they might manage you through to the end. 

He would have scored at a point where they might have said, we’re not going to resuscitate him. We’re not going to give him the same care that we might give somebody else who was coming in, who didn’t have his learning disabilities. And there are many, many examples of families who lost loved ones with learning disabilities through that exact process. 

Obviously now we know what the data says and we know that if you have learning disabilities, you can be so much more likely to die of coronavirus. I think it’s something like six times more likely.

And so that was one of the reasons why we locked down so hard as a family, even though it was very, very difficult living in that situation was because we couldn’t bear the thought of something happening and him going to the hospital and not getting the treatment that he should.

Lucy Goldsworthy: It’s an awful feeling because you know that, you know, pragmatically, Elliott is viewed as less. Less than an equivalent of the same age child and less than our other children. We don’t view him like that. It’s unfair and there’s no other way of putting it. It’s not fair. But then, you know, Elliott’s, his life’s not fair. He might be happy in it, but it’s not fair. 

Ian Goldsworthy: I think it’s also true to say that the near two years now of living with coronavirus has unfortunately conditioned Elliott to have a smaller life.

If you’re a person with a disability, you know, you often have a… quite a small life anyway in terms of what you can access and what you can do and it’s limited and what the Covid era has done is shrunken that even more for lots and lots of families and people with disabilities and that’s a real sad, unexpected offshoot of all this that you have conditioned his behaviour to expect less. 

Saba Salman: So tell me about the vaccination because that would have made a massive difference to Elliott? When did you get an invite?

Lucy Goldsworthy: We didn’t get an invite when perhaps we should have done because he is on the learning disability register with the GP so we’d started following this up and certainly once he had turned 16, we were in contact and trying to find out where can we take him? How does this all work? And that’s when it all started to become quite clear that, that there hadn’t really been any other thought gone into what the alternative was, what other methods we could use to try and sort of ameliorate the problems and we’re just left… Elliott still unvaccinated, despite us trying every avenue open to us at the moment. 

Ian Goldsworthy: We’ve spent all these months banging against doors and trying to find some way of him having the vaccine which is a critical importance because he can’t wear a mask, he can’t understand social distancing, he is more vulnerable to catching it. He is more likely if he caught it and required hospital treatment for that to be of severe consequence because of his difficulties in being treated.

Preventing him getting it in the first place with the vaccine is absolutely crucial and nobody, not his pediatrician, not his GP, not anybody else disagrees with that. And yet there is no facility for him to have the vaccination in a way that he can access it. We have only ever been able to have him have any of his other vaccinations or have any blood tests through the use of gas and air, which will have a mask over his face. Myself and my wife will be there with him, we’ll be reassuring him, making him happy and when he gets to the point where he’s quite happy having the gas and air, it’s not stressful for him, he’s normally quite enjoying actually then a nurse can come in and give them the vaccine.

Lucy Goldsworthy: And the last time we went, we left the room, Elliott all smiles, he actually then ran back into the room and picked up the face mask, which at least for us was a sign of, well, this was something that he was associating with quite a nice experience. It wasn’t traumatic, whereas everything that otherwise would be suggested would be horrendously traumatic for him and I’d be concerned about somebody else’s safety if I’m being honest.

Ian Goldsworthy: And we’ve used that three times before, I think in the past, and yet nobody will do that for us now. Places that would do that for us previously are now saying either because he’s got older, or because of Covid restrictions, oh no, we don’t do that. Oh no, we’d never do that. And then we’ll come back to us suggesting the same thing. Oh, have you tried a social story which has pictures to help him understand what’s going to happen? Well, yes, we’ve tried all those things with Elliott and never been successful.

Have you tried doing it in an environment that he’s familiar with? Yes. We have tried doing it in and environment… the immunisation team go into his special school every year to try and give him his flu vaccine and every year, they come away saying we were unable to give him the flu vaccine and that’s just the nasal spray one.

[Clip: Elliott’s iPad playing]

Ian Goldsworthy: What makes me really cross and really angry is not with our own GP or our own pediatrician, my frustration and my anger is with the system that accepts that people like Elliott should just rely on herd immunity. And that is something that was even said to us, uh, at one point where we said, well, what should happen for children like Elliott? They’ll just have to rely on herd immunity and being told you’ve got to rely on herd immunity when you also cannot take any of the other reasonable preventative steps that you and I, and everybody else has been taking for the past 18 months to keep ourselves safe is akin to just being basically thrown to the wolves and thrown to chance. 

We’ve been trying for six months now to get this organised. To book our jabs, it’s a text message. It’s going onto a website, it’s done in seconds.

And you have parents like us spending six months of their time fighting to get what everybody else can get with the click of a mouse.

Lucy Goldsworthy: I think generally, it’s an oversight I don’t think anyone ever even thought about anybody that would be more challenging to give a vaccine to and that’s the only thing I can put it down to is an oversight and then nobody’s willing to sort of say, actually, you’re right. There is a gap there. We’re not talking a huge number of people this would affect but these are the most vulnerable people. 

Saba Salman: And you mentioned lots of other people and adults like Elliott who have still not had the vaccination and I’ve been speaking to an academic Professor Chris Hatton at Manchester Met University and he’s estimated that there’s over 32,000 people over 16 who have still, like Elliott, not had the vaccination.

What are your thoughts on, on that number? 

Lucy Goldsworthy: That’s fairly damning really. I think it shows that that is exactly the problem that we’re saying and it clearly Elliott then from our point of view is the tip of the iceberg. This is a much bigger thing and it’s just, they’re not maybe groups that have much of a voice. And for anyone, f I’m being blunt, is that fussed about.

Ian Goldsworthy: There are 32,000 people that have been given up on that have been othered that they just think, well, they are different, they are challenging, they can’t access it in any of the ways that are set up, therefore cast them into the wind and hope they’re okay rather than saying they’re 32,000 people who are loved.

Lucy Goldsworthy: But we are aware, you know, going forward, this… Elliott’s always going to need something. There’ll be a point that he hurts himself or that he requires some type of treatment. And if we have this issue with a vaccine, this is symptomatic of a much bigger problem and if that isn’t addressed now that we’re just kicking that stone further down the road.

Finished? Elliott take it out to the kitchen please. Thank you… good boy. 

[Clip: Elliott in the background]

Lucy Goldsworthy: Do you want a drink? Shut the fridge Elliott, come on. 

I know… 

[Clip: Elliott’s iPad playing]

Lucy Goldsworthy: It’s still a scarecrow. You remember this. 

You want something else to eat? 

***

Saba Salman, narrating: Now we’re heading into winter, if Ian and Lucy can’t get Elliott vaccinated, their main worry will be keeping him out of harm’s way.

So the first job is making it through the pandemic.

But that isn’t the end of it.

Lucy and Ian know that the next big challenge for their family is already looming. 

Lucy Goldsworthy: We’re starting to think ahead about what life will look like for Elliott and what he will need because I think we’ve probably got into a… okay, we’ve got all these things in place. We’ve done this, we’ve done that… and then we’re realising that actually because of his age, these things are starting to come to an end. You know, he won’t be at school much…

Ian Goldsworthy: Two and a bit years left. 

Lucy Goldsworthy: Yep, you know, his respite facility only goes up to 18. The Saturday clubs only run up to 19 and then there’s a, there’s a bit of a void that we’re trying to proactively look at what that means going forward and long term for Elliott’s care.

Ultimately looking probably at residential care at that point because his care needs clearly are never going to lessen but are likely to increase and there’s only so much, I think, that we could do.

Ian Goldsworthy: We’ve talked about it a lot and one of the things we’re really keen to avoid is having to make choices for Elliott’s future long-term care needs in crisis. The easiest thing to do would be that we just carry on sacrificing everything we’ve sacrificed in our lives to keep him at home and look after him but there’ll come a point where we can’t do that anymore. And the last thing we want to have to do is to make a decision about his care needs because we can’t do it rather than because we’ve spent a long time looking for it and we’ve found the perfect place for him.

But trying to find that and find the right place is scary and daunting because you do hear all the awful tales of the abuses and the things that are happening and amongst all the awful things that have happened through Elliott’s condition, the one I don’t think I could ever come to terms with is if we’d entrusted his care to somebody else and that trust was abused.

I can’t imagine a worse scenario than that and to have that hanging over us, knowing that no matter how I feel about that, I’m going to have to trust somebody to look after him because we cannot do it forever, is a scary thought.

You’ve often said that whenever he does leave home, whether it’s when he’s 18, 20, 24, whatever it is, he will still be a toddler and imagine sending your toddler off to go and live somewhere else, nobody else would ever do it. And he’s still going to be our baby.

He’s not ever going to come to us and indicate that he wants to go and leave home as far as he knows, this is all he’s ever known and this is his family and we are the ones who look after him. And one of the things I struggle with is how he’ll interpret that and how he’ll feel about that.

You know, of… will he make the adjustment to understanding that, oh, actually my home’s now here and… whatever facility he ends up in and as long as he’s happy? Or will he always wonder, why aren’t I at home with mum and dad?

That’s my home, why am I not there? 

Saba Salman, narrating: For all the really tough stuff that the family have to deal with, now, and in the future, this is a home full of love.

Saba Salman: And how often do you two get to go out… birthdays, things like that? 

Lucy Goldsworthy: I think it would probably be birthdays… 

Ian Goldsworthy: Birthdays and anniversary I think we probably do those…

Lucy Goldsworthy: We try to keep those. 

Ian Goldsworthy: Yeah. We probably see each other about three times a year.

Lucy Goldsworthy: Yeah. which is enough. 

Ian Goldsworthy: Yeah, you know, there’s a reason the marriage has lasted so long, if we saw each other anymore then…. 

Saba Salman: You both talk at times with a sort of such humour in a way, kind of macabre humour. I wonder if that’s a way to get through it. I mean, how, how do you get through it? 

Ian Goldsworthy: We only do it because we love our son and we have to do it… if you’d said to us when we became parents in our mid twenties, if you’d said, this is what you’re going to do, and this is how much it’s going to take from you and how much you’ll sacrifice, we’d have said no we can’t do that. That’s impossible. I’ve got dreams. I’ve got things I want to do. I’ve got a life that I want to get out for but when it’s your child, you know, the one that you love more than anything… despite anything and everything we could say and describe about Elliott, the big thing is, you know, we love him more than, more than anything.

I know I’m angry every single day and that you can’t do anything with that anger. There’s not any use, you can’t rant and rave and get it out of your system and then somehow make it better. You can’t reckon with anyone or do anything but there is, you know, something every single day where I will look at my boy who I love, you know, dearly, and… I’ll look at him though and say, I’m just furious for him.

He’s been denied so much in his life and, and will be denied so much in his life… you know, he’ll never live independently, he’ll never work meaningfully, he’ll never have a family of his own and you have to bottle that anger and put it there because if you just lived in that resentment all day every day. Yeah. You’d end up a very unhealthy and unhappy person.

Lucy Goldsworthy: But you do have to find the humour in it because a lot of it is so ridiculous and some of the things you land up doing that become part of your daily life. When you take a step back, you think this is unbelievable.

This is just not, this is just not normal. 

You’ve got to go with it so yeah, you do get a particularly dark sense of humour because you have to.

Laugh or cry and it’s easier to laugh 

Saba Salman, narrating: Stepping into Lucy and Ian’s home was like going into a different world. Unimaginable challenges for most of us are just the everyday for them and I’m not sure if it was for my sake or theirs, but I needed to end on a joyful note. 

So I asked them to describe Elliott in just a few words…

Lucy Goldsworthy: Giggly, cheeky..

Ian Goldsworthy: Yeah that’s the first word I thought of. 

Lucy Goldsworthy: …and lovely. Actually. 

Ian Goldsworthy: Just big.

Lucy Goldsworthy: Big.

Ian Goldsworthy: Everything’s about it. Big, big appetite, big boy, big loves big hugs. I mean, you know, he’s 16 years old and he’ll still give me a kiss If I ask him to, there aren’t many dads who get a kiss from their 16 year old boys.

And so, you know, him being stuck in that childlike state, even though he’s basically a man now…

Lucy Goldsworthy: There’s an innocence to Elliott still which is quite refreshing. 

Ian Goldsworthy: There’s a sweetness there which is utterly unique to him and, and you don’t get that in any other way, but yeah, I think that’s right. Yeah. 

***