Episode 3: Damien Lane – Caring for a severely autistic son

We speak with father, Damien Lane about his experience of caring for his severely autistic son, Alex who is now in his 20s. Damien shares the ups and downs of their journey together and talks openly about fatherhood and raising a child with autism, from recognising autistic traits in Alex as a baby, through to the emotional decision to move him into specialist care. Listen now and find out more about how Damien and Alex have adapted to the changes and challenges they have faced as a family.

 

Transcript

00:00:08 – Alis Rocca

Nip in the Bud is a charity that works to support children’s mental health by working with mental health professionals of the highest standing, producing free, short evidence-based films, podcasts, and fact sheets to help parents, educationalists, and others working with children to recognize potential mental health conditions.

In today’s episode, we’ll be talking to Damien Lane. Damien is the father of Alex, and he’s been a carer of his son, who is severely autistic. In this podcast episode, we’ll talk about all things fatherhood, how Alex has changed Damien’s life beyond recognition, the trials and the joys of their journey. So welcome, Damien. Thank you for your time.

00:01:07 – Damien Lane

Hello. It’s nice to be here. Thank you for inviting me on.

00:01:10 – Alis Rocca

Damien, we’ve had a chat earlier, and you talked a little bit about being “a mess” at times on your journey, would you be able to give more detail from your journey from “mess” to being the amazing carer you’ve become?

00:01:25 – Damien Lane

Well, it’s nice to be able to say that. I don’t know whether I am, an “amazing carer”. I mean, obviously now Alex is in supported living, but when he was born, he’s the eldest of my two children, Naya is 17 and Alex is 20.

I didn’t know whether I was coming or going. I had no… There is no manual for parenting, obviously, and neither should there be, I don’t think. But I wasn’t ready for it. I didn’t come from a family that had any real background in big families or anything like that. I was the youngest in my family. There were no benchmarks, there were no real role models, and I struggled. I missed a lot of time off work when Alex was just a few months old. Dilek, my wife, bore that burden mainly on her own. I had this successful career and I had no idea about children, about babies, even though I was a teacher. Then one day, I just had to just face up to it. Really, either you stay or you go in the end, ultimately with children, there’s no real half-measures. And the long, hard curve and… I just had to get used to it.

I wasn’t ready. I don’t think society 20 years ago, though it was going in the right direction, certainly didn’t have the attitudes. I had a week’s paternity leave when Alex and Naya were born. There was nothing really encouraging me. There was nothing to… You had to do it all by yourself essentially, which is fine. You learn more that way. But there are days when I’m still a mess where I find it really hard to function. But these days I tend to be able to get over it through sheer bloody-mindedness and experience sometimes.

00:03:40 – Alis Rocca

So it really is learning on the job. You’ve said that your life changed beyond recognition after Alex came into it. Can you expand on that for us?

00:03:51 – Damien Lane

Well, I’ll refer you back to my first answer for the first part of it. Just there’s this irrevocable change from being basically a glorified teenager with a responsible career and the money that goes with it. I was very responsible in work as a Head of department, Head of year and a principal examiner at GCSE. My career was fine. But other than that, I still basically enjoyed playing football, reading books, and buying CDs. And then all of a sudden, bang. As the months grew on, I realized that this couldn’t… that some things had to give naturally and fairly.

Alex, we started noticing Alex had problems about three to six months old. Whether those problems were connected late to the later issues of autism, it’s hard to tell. It’s a murky area.

00:04:54 – Alis Rocca

What sorts of things did you notice?

00:04:56 – Damien Lane

Weight loss. Weight loss, he had to be taken into hospital and he was given milk that was so full of whatever – that it actually was only prescribed by the doctors. This wasn’t stuff that you buy off the shelf in a chemist or a supermarket. There were other issues, so we knew there were problems. We’re at about two years of age, we knew that there were problems. By this stage, I’d started taking him out more, and what would be the thing that really forged my relationship with him, was doing stuff with him, making sure that he was active and as happy as possible. Then his sister came along and he was about two and a half, Naya came along, both of them are an absolute joy. But she’s one of the most remarkable people I know because she’s just come into this situation never having known any better. And obviously, Dilek was busy with Naya and therefore, well, I had to sort of like… And the best way I can encapsulate the difference would be, when Alex was born, the midwife said, “Yeah, he’d be better off back at work, wouldn’t he?”

Yeah, I’d be better off back at work. By the time Naya came along, as I was going back to work after my week’s paternity leave, Alex was crying at the door, as was I, as I would have to go in the morning. There was no choice in that. There’s no, Well, whatever. It was just, I’m dad, I got to go to work. It just is what it is. And you’re working in a tough, comprehensive school. I love the kids there, but you’re working in a tough, comprehensive school. About half an hour, 40 minutes every morning, travelling up the valley, by the time I got out of my car, I had to make sure that all my tears were wiped away and I put my teaching head on, because otherwise, that was just my day, gone. That for me, that encapsulates the change and it was a gradual process, but here was somebody, and I never thought this, it never would’ve occurred to me, that somebody would want to spend that amount of time with me and actually, perhaps even need me. It just never occurred to me. It just wasn’t a thing, you know? There he was.

00:07:32 – Alis Rocca

How did he manage with you going back to work and not having that time with him for that period?

00:07:41 – Damien Lane

He obviously managed because he’s got a wonderful mother as well. We had friends and things like that. And you manage, you have to learn to cope. But leaving one parent alone with two young children, particularly one that has been recognized has got lots of problems – is problematic. It’s problematic. You’ve got to go out to work. You can’t not go out to work because you’ve got to pay the bills. And to this day, that sticks in the craw for me, because if I… You know, if I could have, we can’t have our time again. But what I would like to see in the future is, and it would be mainly men, even now, no dad should be put in the position, no parent should be put in the position of having to make those choices. It was absolutely gut-wrenching. I knew I was leaving my wife with two children, one of whom had great issues and a baby, and there was nothing I could do about it. I simply was powerless. It’s a really quite emasculating feeling, that there’s nothing that you can do because you’ve got to go to work.

00:08:53 – Alis Rocca

Was there ever a period where you were at home and, Dilek your wife, was at work and you were with the children?

00:09:00 – Damien Lane

No, not in that time, no. Because I’m older, so teaching works. You’ll know, it works on pay scales. I’d been in teaching longer. So there wasn’t only the obvious factors that Dilek’s a woman, when she couldn’t breastfeed and things like that. I can’t do any of those things. I know there are supplements, but you can’t really replace those things.

In the first few months of life, you can kind of replace Dad. You can’t really replace Mum. I’m interchangeable. I was there because they’re my kids, don’t run from your own kids. But I was certainly replaceable. Mum’s not replaceable at that period in life. And I think that’s where Dads really have to forge their relationships with their kids, because it’s in those early months. And looking back, I’d love to have had some time with them. It would have been a great joy for me, but I just couldn’t.

00:10:03 – Alis Rocca

So when he got older, and you talked a little bit just now about taking him out and the fact that he liked to be active, tell us a little bit about those times and how you managed to really create that bond and that relationship that you’ve got with him now.

00:10:24 – Damien Lane

I think initially it started out because I had to… I had to do something to help and I didn’t know exactly what I could do because as I said I just felt useless, just felt a mess and useless. But a very close friend of mine had a son just a few months younger. Excuse me, what we do is we, on Saturday mornings, we’d take them on the train from Newport to Cardiff and we’d go around a corner from the station and into a little coffee shop and we’d have breakfast and then we’d bring them back. We’d be gone the better part of the morning. And this friend of mine, Greg, who helped me edit the book that I wrote about being Alex’s dad, we built up from there. We built up activities. I realized that Alex loved being on the move. He loved being on the move. And then it kind of just morphed. I mean, we did try a footballing session, Soccer Tots. It was an unmitigated disaster. And so we haven’t tried that again. It was an unmitigated disaster. It really was. If you know your football, you’ve got two dads turning along, one’s an Ipswich fan and one’s a West Brom fan, the kids have got no chance, but…

00:11:48 – Alis Rocca

So when you say he liked to be on the move, was that things like being on the train, being in the car, walking?

00:11:56 – Damien Lane

Yeah. You hear this a lot with parents. I’ve heard it quite frequently when children, autistic children, severely autistic children, is what I can comment on, I feel, that if there’s an absolute meltdown, into the car, off we go. An hour later, you’re back home and everything’s better again. And that became the thing that I did with him. And what eventually, over the years, what started out as a little journey along the railway, 15 minutes, and he loves Thomas, the Tank Engine. It’s the lines, it’s the predictability of it. What morphed into that, ended up in me taking him everywhere, including twice when Dilek went ahead to France to see her family. She went a week ahead and I twice took them over by myself in the car, without really any hints of a problem. There’s this bloke – like I had gone from being utterly, really, I can’t emphasize how useless I actually was … I took them to France by myself, the two of them, staying a night in a hotel with all their stuff and all the rest of it.

00:13:10 – Alis Rocca

That’s amazing.

00:13:12 – Damien Lane

And you just assume you just do these things.

00:13:17 – Alis Rocca

And I suppose that relationship that you’d built meant that they both trusted you. And that’s why you managed to do it without any incident on the way, that there was that mutual trust in the relationship.

00:13:30 – Damien Lane

What I would hope so, and obviously, Naya, she’s just wonderful. She’s known from a young age ‘I’ve ‘got to……’ She’s had more responsibility in that. I said to her I can’t remember, she must have been about eight or nine and said, Well, I’m going to be in the passenger seat on the front, on the French motorways. If I pull in close enough, you’re going to have to put the card in on the toll thing. She would, and she would. She would be absolutely fine if she could help in any way, then she would come along and she would help. She helped in the best way another child, a sibling can in these situations, is by not being a problem herself. I can’t say any more than that for her … But I found out that I just had to learn. There was no real… Nobody really taught me about the places that I would take him. I would take on suggestions and all the rest of it. I’ve driven tens of thousands of miles with him. A lot of it alone in the car.

00:14:33 – Alis Rocca

Have you got any tips that you would give to your earlier self, looking back to those early days when they were both young?

00:14:43 – Damien Lane

I probably would be quite harsh on myself, say pick yourself up and get going a lot sooner than I did, firstly. Secondly, I would say, keep him active, do the things, I would say, do the things that I did. In the earlier days, I would say have a lot more patience, a lot more patience, a lot more patience. I was in my early to mid-30s and the difference is I think we all get more patient. A lot of us get more patient as we get older, but he’s extraordinarily challenging. One of the lucky things I had was that I didn’t… The one thing I wouldn’t say is, Do you know how severely autistic he is? Because not really realizing that just meant I had to muddle along. If I’d have realized quite how severely autistic he was, it might have changed my mechanism. The other advice I would give is the only advice I’ve ever heard from any expert, because experts in autism is almost a contradiction in terms. Once you’ve met one person with autism, you met one person with autism, and that is it.

00:15:59 – Alis Rocca

Okay, so what does that look like in Alex? What does autism present itself like in Alex?

00:16:06 – Damien Lane

Well, there’s a caveat to that. There’s the prepubescent Alex and the postpubescent Alex, which is a fundamentally different person.

00:16:20 – Alis Rocca

Start with the prepubescent. Have a bit of a description of the types of behaviours that you were seeing.

00:16:31 – Damien Lane

Essentially totally nonverbal. Bright was the first in his primary nursery class, it was the only year he spent in any form of mainstream education. Was still in nappies, but could write, could spell his name, could do alphabets in French and English, can understand French and English. Brilliant input, summed up best by brilliant input, extraordinarily limited output. Interest, many classic interests, as I said earlier, Thomas the tank engine. There’s a program that was deliberately created and voiced by Stephen Fry called the Transporters that was sent out to families like ours, about 15 – 17 years ago. He would love things like Postman Pat and I would read him those. So nonverbal, very good understanding, very, very limited interests or the “Triad of Impairments”, they call it. I can’t remember what they are off the top of my head, but people can look them up. So limited communication, limited interests, no real interest in spending time with other people, even his own sister. But also extraordinarily affectionate. The most beautiful smile, a pub landlady once said when he was very small and he was walking up and down on the same line of bricks or something on the pathway in this country, in this pub, down near Bath where my great aunt lived, and said, “he’s got a smile like a waterfall”. I mean, “a laugh like a waterfall”. It was one of the most beautiful things I ever heard. So you had these upsides and downsides.

00:18:23 – Alis Rocca

How did that change in puberty or after puberty?

00:18:31 – Damien Lane

This has made me think a lot as a teacher, mainly secondary teacher over the course of my career, that this happens to all our boys. All boys and men, it happens to all of us. But the change in Alex was particularly stark, and it’s made me think a lot about being a teacher. Obviously, it’s made me think about the ramifications in education and society more generally and the way we address our boys.

00:19:06 – Alis Rocca

What were the changes that you saw?

00:19:09 – Damien Lane

Well, essentially, he went from being this gentle, kind boy who had a really quite loving relationship with his sister. He’d twirl a ribbon around her… He’d spend his days walking and twirling ribbons around a straw and you could take him anywhere, you could go anywhere. There were meltdowns, yes, there were, but you could do anything. Then he was diagnosed with epilepsy. Some drugs were administered. He was given drugs that made him more aggressive. But then, of course, the testosterone, it’s like this huge hit, drug hit. You don’t know whether you’re coming or going some days. It’s in your body 24-7, 365 days a year. You can’t avoid it. It’s there all the time. I’m a man. I get these feelings, the sense of aggression and anger when things are going tough, when things are tough. Now, I sometimes struggle to control it and sometimes I can be quite articulate. I can go and play football; I can talk to my mates over a pint. Alex can do none of those things. All of a sudden, we had this complete degeneration in his behaviour that I’ve seen in secondary schools as well. I’ve seen happen in secondary schools, but not to this extent.

He went to attack and he started going for his sister that she wouldn’t even go in the same room. I don’t know how that must feel that this brother that you’ve absolutely loved and all of a sudden (and it’s nobody’s fault), then he’d be having a go at his mom. Then probably the eye surgeon at Bristol Eye Hospital, he noticed he was blind when he was 16 in late 2019, and that was probably self-harm, and we’re still getting quite a lot of self-harm.

00:21:04 – Damien Lane

For me, the change since puberty has been one of the most gut-wrenching things personally for me. During this period, both my parents had split over that period, the lockdown certainly didn’t help because all these activities were curtailed. Quite literally, they were just cancelled overnight. I lost both my parents in that period, but the changes in Alex were far more emotionally impactful upon me, than even losing my own parents. Just the transition. There’s the tale that one day and we, and Dilek and a carer friend took him to the local children’s centre, where the specialists see children.

And it’s an excellent centre, the specialist had said, No, there’s no problem with drugs. There are no side effects, which is a fairly bizarre statement to make. But we were seeing these bouts of aggression in him. I didn’t go to that appointment. Sometimes it was me, sometimes it was Dilek. I didn’t go to that appointment. I jumped for joy when I heard that he walked, the first week, he still had sight at this point, when I heard that he walked into her office and kicked a computer, monitor off her desk. About Bruce Lee, I’m guessing. But it took that for this supposed expert to realize. We’re giving him drugs on top of this huge drug that’s already gone into his body, into his system that has changed everything about him. I’m not a medical expert, but I’m his dad, and the transition coincided with puberty, and it guts me that I couldn’t, I didn’t, I don’t know the powerlessness, just… There are no words. There are no words.

00:23:09 – Alis Rocca

Thank you. I know that Alex had a fabulous speech therapist and that these sessions were more about communication skills. How did this help him? And what advice would you give to a parent or teacher listening on how important this type of therapy is?

00:23:27 – Damien Lane

We had this wonderful speech therapist who worked patiently with improving… Speech therapy is almost a misnomer. I mean, the full title is a speech and language therapist. And what it is, it’s about building communication more generally. And she absolutely did that. And this goes on to what we might talk about later about Alex’s school in Penarth. They had this holistic approach where there were speech therapists and occupational therapists who work together, these people are real experts. And what they can do is quite remarkable in building trust, patience, and skills into people like Alex so that life can become less hard for them through really quite innovative ways of thinking. There’s no miracles in any of this. It’s just really hard legwork. We’ve got one lady who works with him currently, and she’s a music therapist, and it’s the same thing. Through music, he responds so much better than he does in many other circumstances. It’s about getting the right therapist to provide the right relationship because we’ve had different ones. When we found the right one, it was a joy to behold, and the progress was palpable.

00:25:02 – Alis Rocca

What was the progress you saw in his communications?

00:25:07 – Damien Lane

Just had this patient relationship, and it was being able to get him to do things, actually getting him sitting down doing stuff without having to get… One of the best phrases I’ve ever heard is “it’s like herding cats”. It really is. Like, take your cat, we got a cat. I mean, we’ve got a cat. And so if she doesn’t want something, she just disappears. It’s a similar… You’re working on similar… In some ways what you’re doing is quite similar, but the ability to get someone like Alex to sit down and to focus on a task, and I don’t know where he got it from. I don’t know quite where he got it from, but before he lost his sight, he was quite capable. He grew into being able to do 500-piece puzzles by himself. It was quite remarkable.

00:25:58 – Alis Rocca

So he could sit and focus.

00:26:01 – Damien Lane

He could sit and focus. I think a lot of that must have come from the work done with him, this ability to just sit down.

Obviously, when you’re autistic as extremely as Alex is, and you get into something, it’s actually sometimes going to be quite difficult to pull him away from it. That could equally be a problem, and it’s that ability to be able to communicate with other people, because though the burden of communication should be on the carer or the people around, there also has to be some, if you can, some attempt on Alex’s side to be able to understand that the world around him won’t always function to his requirements. You can’t go everywhere all the time and expect people to… even in a country like Britain where things are on the whole, people are pretty understanding in this country, and it has to be said. But you can’t always expect, you don’t have a right to expect. And the better you can… I don’t really know what the term would be. Training, I don’t really like. We all socialize our children as parents and teachers. You’re not going to get that level of interaction from Alex, but if you can help him understand situations.

And the speech therapists did that, and it worked well in those years before puberty came along like a bullet train.

00:27:31 – Alis Rocca

Thank you for that. So advice out to parents and teachers would be to find the right therapy and the right therapist that can build those relationships.

00:27:41 – Damien Lane

I think you have to find the right school, and often local authority. Alex went to school in Penarth because here in Newport there wasn’t a provision. There is now, and I understand it’s a very good one, but you’ve got to find somewhere with a holistic provision. And again, it’s something, as a teacher, that I would say, particularly in secondary, that I think there is some fairly profound issues that we have with mainstream education in this country, having worked at a global assessment level, right down to working in the tough valleys comp. But also one thing that we do extraordinarily well when we do it well, is special education. But to do that, you need the holistic team around you. It’s not just the teacher or the learning support system. They’re all important. Everybody’s as important. The occupational therapist, the speech therapist, the teacher, the support workers, everybody’s important.

00:28:38 – Alis Rocca

Can you tell us a little bit about his schooling? So you said at the beginning that he started off in mainstream school. What was your thinking around that? Why did you want him in mainstream school from the beginning?

00:28:51 – Damien Lane

I always wanted my kids to go – my mum sent me up the train line in South London, up to a grammar school when I was 11. I wanted my kids to be educated locally in their local comprehensives and all the rest. Right. I was absolutely gutted when at the end… He went to nursery in the local primary school when Naya just went through. I was in no… I just… It never occurred to me that my child would do anything but. And it took his godfather, who was at that time, a deputy head in a primary school, in Hertfordshire, I think it was, and Andy explained to me that he said, “Look, he’s my godson, but I couldn’t have him in my school because the provision isn’t there”, because everybody was saying that he needed to go to a special provision within Newport. And there was a unit, and it turned out to be the best thing for him. But it took Andy and a visit to the pub, to ram that through my thick skull – because I knew no better. I didn’t have any bearings. I didn’t know. I just didn’t know. I’m only speaking personally.

Obviously, my wife and I spoke of this, it’s about this at some length, but these are my personal recollections, I didn’t know. I had nothing. I’m so glad I had people like that around me that could say, Look, you’ve just got to do this. There’s no way around it. And it turned out he had a wonderful teacher. She was absolutely brilliant.

00:30:27 – Alis Rocca

What was so good about him going into special provision? What changes did you see from the professionals around him? But also how those changes impacted on Alex?

00:30:41 – Damien Lane

I think you have to accept that when you’ve got a child whose needs are as severe as his, and it was becoming clear, even to me by then. And his sister was, of course, grown up, and she was doing all the things that all other kids do, most kids do at the time that she was meant to be doing them. Even I was thinking, All right, I get it now. It was like, takes a bit of a while to get it through to me. The first thing that you’ve got is the staffing ratio. The classes were very small. They were set up in a way that was conducive. It was all boys in this unit at the time. There were 12 boys in the units to the boys’ needs. The staff had been trained and they understood what the requirements were. Everything, absolutely everything was geared to helping them understand the world around them. But importantly, the school, the unit was attached to a local primary school where the boys could share facilities when they could – like the canteen. That was the thing that got Alex learning, one of the things that got Alex socialized and being able to go out more easily, was eating with the other kids in the canteen.

I heard a tale, because I became a governor at school for a couple of years, and I heard a tale from one of the other parents who said, “Yeah, Damien, we had this new kid in the mainstream unit. And we said, Who are they?” Pointing at the boys doing their odd things because that’s what they do. It’s like they do stuff that’s different. It is what it is. I said, “Oh, they’re the autistic boys. They’re part of our school.” Job done. You don’t need hours and hours and hours of knocking kids over the head about talking to them about equal rights and everything. You just do that. Job done. You don’t need to like, pontificate at them. They were there. They weren’t in the mainstream classes, because it wouldn’t have been fair on the boys or the kids in the mainstream classes, obviously. But where they could be, they were together, where they could be. And that interaction is magic. It’s magic because everybody gets something out of it. The boys learn to socialize. They learn to become… They learn that, most of them manage to become part of that school in some way in a way that in previous generations that they would have been completely isolated somewhere else.

00:33:10 – Alis Rocca

So what advice, if any, do you have for parents choosing the right school? And if they’re able to have that choice to go into special school, but there isn’t the ability to mix with the local comp as your Alex did, how would you get that socializing? And how would you choose the right school for your child?

00:33:34 – Damien Lane

There was no secondary provision that we were happy with for Alex, so we had to go to tribunal to get him into Ysgol Y Deri, in Penarth, which has figured in a BBC documentary called “A Special School”, and it cost us, but it was some of the best money we’ve ever spent. You don’t get the money back, win or lose. Mercifully, we could find the money wherever, looking under the bed or whatever.

But we found money. I’m aware that a lot of parents wouldn’t be aware or wouldn’t be able to find the money. It’s a long, hard slog. Some of this, and most of the problems that I face as a parent has been bureaucratic, deliberate, intransigence, thoughts, just obfuscation. It’s just really depressing at times.

00:34:24 – Alis Rocca

Where would you get support as a parent? I’m not talking financial, but where would you get support to find out your rights and what choices you have? Who would you go to? What would be the first steps?

00:34:38 – Damien Lane

The first one would be somewhere like the National Autistic Society. Look on their website, ask to contact them, ask to speak to people there. And then there will be local organizations and charities. We fell into a couple of local groups. I can’t remember exactly how, but now obviously with social media, look online, look locally, Facebook, Google them and they will come up. Those groups will be there. Those people will be available for support. They will happily support you. That’s what they’re there for. I know there’s one group where they gave me a specialist ‘hug box’ for Alex – this lady had recently managed to get a job lot of them. The one thing the parents need to understand, the choice of schooling is going to be extraordinarily limited. In many ways that’s normal as it should be, because we’re talking about a very specific, very small section of the population, mercifully. He could have gone to a school in Newport that was very much in secondary term, special-needs based, but we didn’t feel that the classes for severe autism in that school at that time were conducive to these needs. My wife was much more clued up on this than I was.

I went along with what she was saying, because she’d done much more reading up on it than I had. And it was the right decision and one of the best decisions that we ever made. So in summary, look what’s out there. Go to the National Autistic Society, who might be able to guide you locally. If you need to seek legal advice, we sought legal advice often, but if you’re going to do that, make sure you’re looking for a firm versed in education law. You don’t just go to any solicitor. If you’ve got a friend who’s a solicitor, ask them, they might know somebody and they’ll usually give you half an hour to an hour as free or cheap advice. But look online, look for support. Primary provision quite often is better than secondary provision, but that’s a failing within our more generic education system as well. But the school in Penarth is from 3 to19.

00:37:02 – Alis Rocca

It’s all through.

00:37:03 – Damien Lane

Yeah. As it became clear that his primary school provision was going to close, we always wanted him to go to this school in Penarth anyway, that just hastened the process for us. I hope that’s been helpful.

00:37:24 – Alis Rocca

Thank you. Yeah, that’s really helpful. So Alex is now in an assisted living space. Can you tell us how you came to that decision for him to move out? And I’m sure that wasn’t an easy one. But what are the positive aspects of this arrangement?

00:37:44 – Damien Lane

In about September of 2020, so we had a few months of lockdown and there are no words to describe the completely callous, callous is the only word, shutting down life of people like Alex. One day with two carers during lockdown, we were at Cardiff Bay, and this PCSO came up to us. He was eating, he was being spoon-fed an ice cream because he couldn’t see. This PCSO came up to us and said, “Can’t you take him home to eat that?” That encapsulates the cruelty. The cruelty of… and I say that because it’s important. That’s an important thing because that sped up Alex’s decline at home in terms of behaviours. It was one Friday evening, he was being particularly difficult. I took him out in the car. Dilek had cooked tea. I timed it to get back in time for tea. He had his tea. We thought that would calm him down. He was being difficult again, so I said, “Right.” I was quite forthright with him in French, “in the car, now go”. He started kicking off in the car really quite badly. There had been a few incidents like this before. This is the final moment.

I got him home. I don’t know how, but I did. Saturday came around. I would go up to the Monmouth, like we often did on a Saturday and the journey up was hell. I don’t know how I got to Newport. I had to cut, I had to take some time off. He was sat in the back and he was almost kicking me in the head. I got to Monmouth, parked up. Went to the cafe where we normally go and he had his bacon sandwich, wolfed that and some cake, as he normally does and that was all alright. He was being very noisy and very agitated, but it was okay. It was manageable. Back to the car, journey back. I don’t know how I got back to Newport in one piece. I can’t get in the last five minutes so I call a friend who’s a carer and she’s at home, she’s nearby. She comes out. We get him in her car. I leave my car parked on the side of the road and we get back to the house and I’m in tears. I’m just gone. I’m just gone. Dilek drives me, our carer friend stays with him and then Dilek drives me back down to get my car and I’m in tears and that’s the moment when I write an email to family social worker saying, ‘This has just happened,’ because I’m not… It doesn’t matter who the person is, it’s irrelevant. It just happened to me because I’m bigger than him. It wasn’t anything I was doing special or anything. I’m not special in any way, but it just happened to be I’m the bigger one, the bigger one. But if he suddenly, if there isn’t one person in family that can manage it, you got no chance.

It was from that process in late 2020 towards that we then had this company come in, so I’ve outsourced care of my child to a private company. It sounds pretty callous, but actually they’re brilliant. We had this managed move and in February 2021, he went into this supported living outside Newport and it’s a lovely house. The care team are brilliant. But there’s, rarely a day goes by –  when I see his photo, I’m looking up from the computer and he’s smiling at me, there’s rarely a day goes by when I feel that I’ve failed. That on my own, people will rarely see me crying, but I do. I do, Christ. Yeah, I do.

There’s rarely a day goes by when I feel that I’ve failed him, that I’ve failed as a parent because I just couldn’t do it anymore. It’s not because physically, I can’t. It’s just one of the most horrible feelings when you say, I couldn’t look after my own child. It’s a really, really… I don’t know whether I feel different to mums, but dads feel it too. We really, really do when you get to these points. It’s just appalling. It’s one of the most… But you have to do what’s best for him. And he’s happy. Today, he’s been down on the beach at Barry and there, we’ve seen some of these wonderful photos of him lying on the beach and that.

00:42:29 – Alis Rocca

And although that decision was so difficult for you guys to take, the description you’ve just shared with us and the process that you went through to reach that decision, is so clear that you didn’t fail him as a parent. But also, what you’re saying now that he’s happy where he is and he’s enjoying his new circumstances, his new life, being able to get to the beach, how often does he come home?

00:42:59 – Damien Lane

It’s important to say that he still has severe issues. There’s been a lot of self-harm. I’m not going to go into details, but there have been some really quite profound issues that we obviously deal with together along with the team in the house. My wife attends multidisciplinary teams meetings more often than I do. But sometimes the bureaucracy, again, there can be really stifling if something needs to be done. It’s remarkable how slow some things can be. But he comes home a couple of times a week. He comes home for an afternoon, because at the moment, he can’t really manage much more than that. It’s that challenging at the moment. This is somebody that is deemed to be 2:1, 24:7, that he needs two adults 24:7. That’s what the current legislation seems to be. That gives you an idea of the level of severity that we’re talking about here. And obviously, you add in the epilepsy and the blindness as well. We’re talking somebody with some of the most profound needs, one of the most profoundly vulnerable people you will ever meet. But there have been… He’s well cared for. He’s as happy as he can be, bearing in mind everything I just said.

00:44:27 – Alis Rocca

Yeah, thank you. You talked a little bit there about your emotional situation, about crying. What do you do for your own mental health and well-being, Damien?

00:44:43 – Damien Lane

I’m currently going through some counselling. There are broader aspects to that, which there’s more to that there. But a lot of it focuses in and around Alex, obviously.  I play football, I read. One of the upshots of Alex being in supported living is that I’ve managed to spend a lot more time with Naya. Because before that, it wasn’t quite that simple. It wasn’t quite this simple. But Dilek would do evenings and nights and I would do days. It’s never that simple, but she did more than me in the night. Then I would take him out for whole days, and evenings. When I was in work, I would take him out for evenings. That means I could go for weekends when I’d only seen Naya fleetingly. I’ve been quite lucky in that respect, and that’s helped me a lot because I realize what a wonderful person she’s developing into. It’s nice to be able to have that dynamic with a child, with your own child. I’ve never had that, obviously. I’ve just had for all the things that he’s taught me. I’d give anything for him to not have taught me any of those things and just have a normal life. I go to the pub with my mates and we talk about football.

00:46:27 – Alis Rocca

And do you… Do you have friends that you can talk to these sorts of things about as well?

00:46:36 – Damien Lane

Yeah, I do. I’m very lucky. I’ve mentioned a couple of them already in this podcast. And I think that I’ve written a book about being Alex’s dad. My other friend, Greg, that I was telling you about earlier, has had his own tribulations and he’s written plays and stuff like that. And we talk. I find that really helpful. I just try and keep going. I try and do stuff.

00:47:12 – Alis Rocca

Do you think that writing was a bit of an outlet as well for you?

00:47:17 – Damien Lane

That writing was really strange. I think it was. It was quite cathartic because it started off as an MA thesis down here at the University of South Wales, and my lecturer at the time, she said, “Oh, I’m an avowed feminist, but there’s a distinct lack of literature in this regard”. There’s a Professor Emma Langley at Warwick University who’s done some research into male carers and the impacts upon us and the broader family, because it’s not just us, obviously. Then I realized I couldn’t afford the time or the money. So Dilek said, “Well, why don’t you just write it?” So I did. Then I asked Greg because I knew he’d had stuff performed, “Can you help me edit it?” And he did. And then it just rolled through and I got it published by proper publisher, proofread everything. So all of that was quite cathartic. Naya wrote a chapter as well because I think that we… It was cathartic to the point that it dealt with what had gone. But obviously it’s still a very, very hot situation. It’s still very, very now.

00:48:27 – Alis Rocca

Yes, I understand.

00:48:29 – Damien Lane

Sometimes I just feel emotionally numb, Alis. I just feel there are just days when I don’t feel anything. Then there are moments often, when I’m on my own…last week, it hit me when I was down walking on my own with my headphones on, listening to music, and it just hit me there at that particular point, this place where I used to take Alex down by the estuary. I don’t think I’ll ever get over it. I don’t think you should. It was largely on my watch that he poked himself blind. I don’t really know how you deal with that. There are days when I’d say, ‘well, he did’, yeah. He would have done it anyway, and that’s what everybody tells me. It’s true, and I can’t change it, but it doesn’t mean that there aren’t moments where it’s like, as I said, how men feel as well. I don’t know whether we feel the same or differently, but it just feels to me sometimes that our feelings are not… I’ve got the impression, and this is not my wife’s fault or anybody’s, but I just get the impression that our feelings just are not considered to be as important. It’s as though we just have to kind of… Everybody has to deal with this situation. But I’ve been at meetings where I’ve been looked through and over and past. And then they say they want us to get more involved and then we’re in. Excuse me, I’m here!

00:50:12 – Alis Rocca

Damien, what advice would you give to any other fathers that might be listening with regards to looking after their own mental health and well-being during such a difficult time?

00:50:26 – Damien Lane

Well, the first thing I’d say is don’t run. Don’t cut and run. I know a lot of blokes do. Because it’ll be even worse. I’m guessing it would be even worse unless you don’t care, then I can’t really account for people like that. I’m sure they’re out there. So, this is advice for the men that do stay. It’s going to be hard. There’s times you’re going to be treated like a second-class citizen, not by your relatives, not by family, but by the system. But stick in there. Because whether it’s worth it or not, you chose to have kids. They’re your responsibility. They’re not the school’s responsibility. They’re not social services responsibility or the government’s. They’re your responsibility. That’s the first thing. The second thing is try and seek as much support as you can along the way. If people want to look me up on Facebook, I’m there and contact me or whatever, I’m quite happy to do that. Stick in there, get the support that you can, talk to a friend, talk to your mates. I think it’s important to talk to anybody that’s going through this, because ultimately, whether you’re a mom or a dad, you are going through the same thing. You might be experiencing it differently, but you’re going through the same thing.

You’ve got the experience of the difficulties. Your whole life has been thrown upside down by a child with severe learning difficulties and disabilities. It’s a gut-wrenching thing, but there will be moments of utter joy along the way, the laughter like a waterfall, the winning of a Christmas card competition, as I recall, the trips up to highest, up two and a half thousand meters of French Alps and all that kind of stuff that I’ve taken him on over the years. The learning to swim that started with gut-wrenching howls that I just walked away from and had to ignore, to loving the water. There are moments along the way that are just pure joy, but they’re going to be interspersed with many more hard moments. The moments of joy are often in a period of a year, few and far between. But the fact that you are there with your child is the joy. That is what it took me time to learn. That’s what I struggled to learn to begin with. But that is the thing. You decide to have kids, then you stick by your responsibilities and you will get something out of it yourself.

00:53:12 – Damien Lane

Not that that’s the aim, but you will. You will learn. And look out for local dad’s groups. We got a superb one here. I don’t go as often as I can, as I might like. But talk to other men in your position. Talk to other men, because I think it’s important that us men learn to talk and learn to express our emotions and learn that we can do the same things – with the obvious exception of giving birth – that we can be as good parents, not better or worse, but as good as Mum, that Dad can be as important as Mum. We’ve got to learn that,  we’ve got to tell our boys that they can do those things. Because they can.

00:53:56 – Alis Rocca

Damien, thank you so much. You’ve been amazing. Loads and loads of jewels of wisdom throughout our conversation. And thank you for being so candid, so open in sharing your journey. And we wish you and your family well. Thank you, Damien.

00:54:14 – Damien Lane

Thank you very much.

00:54:17 – Alis Rocca

I hope you enjoyed today’s conversation and are able to take something interesting and positive away from it. Our podcasts are sensitively produced and give evidence-based information, whether from academic research and experts in their fields or from lived experiences. They are created to help others spot early signs of distress and may require further monitoring and information on how to follow up and get help. Learning about child mental health and understanding how to recognize potential disorders is an important first step for everyone caring for children and young people.

Please visit our website, nipinthebud.org and go to our ‘where to get help’ page for organizations which can provide both support and further information to help you and those you care for. Any specific links that we’ve spoken about today can be found in the show notes.

Finally, you can find Nip in the Bud on all the socials and get more information and further support. Don’t forget to subscribe, like and share with someone who you think may benefit from all that Nip in the Bud has to offer. See you next time.

Back to Podcasts

Related Films