Ep4: Yes to planning for the future as a parent

Ep4: Yes to planning for the future as a parent

Speaker Key:

PC              Paul Crompton

LN              Launa Novas-Hughes

SH              Sally-Ann Heap

 

00:00:00

PC              Hello and welcome to Yes to You, the Lifeways podcast. Lifeways is the UK’s largest team of support professionals who provide support for adults living in the community.

                   I’m Paul Crompton, Marketing and Communications Manager and podcast host here, and I’m speaking to Launa Hughes, an Inquiry, Referrals and Engagement Manager for the West Midlands. And we’ve also got today a special guest, Sally-Ann Heap, who’s the mother of Christopher, who we as Lifeways support at Haddon Court.

                   Haddon Court is our supported living service of around a dozen people in the town of Hampton, near Peterborough. This is the first time ever that we’ve had a family member of someone we support, on the Lifeways podcast. So a very warm welcome to both of you, and particularly to you Sally for being that family member. So great to have you both here.

LN              Thanks, Paul.

00:00:52

SH              Hello, thank you.

PC              Sally, let’s start with you. Could you give us a little journey, if you like, of external support that Christopher has received since he was a teen until now?

SH              Well, starting at the age of 13, he was at school at a special school in Knossington Grange, which is in Rutland. I had originally started him off in mainstream school, which wasn’t very successful at all and they then supported us in getting him into special school.

                   From the age of 16, he then went to the Wing Centre, which is a post-16 placement school for those 16 to 19-year-olds, and he did really, really well there. He really came out of his shell and became a young man instead of a little boy.

                   From then, he came home and that was when the interesting things began because then he was an adult and we had to move from child social services to adult social services, which meant we had to then find ourselves a social worker. That was an interesting journey in itself, which I won’t go into.

                   And then eventually, after having got a social worker, Christopher was placed into a supported living placement, which was completely different to the Lifeways setup. He had his own room in a house that was shared by people that were of varying difficulties, but most of them were more physical than Christopher and he didn’t manage there at all. It was actually a disaster and we pulled him out of there and then he came home.

00:02:46

                   From then, up until the age of 32, he’s been at home. So, over ten years, he’s been at home not wanting to be with anybody else except us. We couldn’t leave him on his own. He was just here and it was like having a very big child in the house. In fact, when he was in his mid-20s, he decided that he wanted to become independent. He literally got up one day and came downstairs and said, Mum, I’ve decided I want to be independent.

                   Well, you could’ve knocked me over with a feather because we had gone from, I’m not going anywhere without you and you can’t even go out of the house without me, to, I want to be independent. So we then worked very hard on teaching him skills that he needed. Life skills, cooking and cleaning and all of the things that he needed to know. He then self-referred in, I think it was January of this year, to Lifeways, and from then on, we’ve been working towards him moving into Haddon Court.

PC              That’s really a very interesting journey and I’m probably going to ask you a lot more questions to tease bits of that out but what are Christopher’ main support needs?

00:04:10

SH              He needs a lot of emotional support. He gets very anxious very easily. He really does not like noise and so, therefore, has to be supported if there are external noises, particularly fire alarms or sirens going off, bangs, certain types of music.

                   He also needs to be kept safe because he can’t see stranger danger and he can’t read possible scenarios in situations that he finds himself in with people. And he needs a lot of support to understand what people are actually saying, the hidden speech behind what they’re saying.

PC              So from what you’re saying, it doesn't sound then like the previous support he had at the shared house was really the right kind of setup.

SH              It was completely unsuitable and there was no transition and that really made a huge difference. Although, the whole setup was completely unsuitable for him. It hadn’t been well thought out. We didn’t know what we were looking for anyway, all we had was the picture of the Wing Centre which we knew we wouldn’t find again in the same way for an adult.

                   And so, it was a disaster but we learned a lot from that. We learned what we need to look for that Christopher needs.

PC              Did you feel that perhaps Christopher actually required more support after that experience than before, I gather from what you’re saying?

SH              Oh, definitely. He took three steps backwards. A lot of the work that the Wing Centre had done was lost because he’d lost all his confidence and he also felt that we might abandon him again, and that really posed an emotional major problem.

                   Right, it’s a post-16 school, it’s down in Bournemouth and it is specifically for those with Asperger’s, boys. It’s a wonderful place.

00:06:34

PC              That’s obviously being Bournemouth and you’re living around Peterborough…

SH              Yes.

PC              That’s also not far away from where Christopher is right now, so it’s obviously quite a big move.

SH              Absolutely.

PC              Were you quite happy to have Christopher, or was Christopher happy, to live a little bit closer to you than Bournemouth?

SH              Yes, he was. Bournemouth was a bit of a challenge to start with because, of course, Christopher felt very, very homesick but we felt so right about the Wing Centre. It just felt right for him, that we persevered and got him through the homesickness bit and then he was absolutely fine.

                   Moving back, of course then he had to get used to living with us again and we had to then readjust to him living here. Although he came home for holidays, all the school holidays, it was readjusting again.

00:07:28

PC              Moving forward to the present time from about January, how would you then describe, very briefly, how the transition went this time for Christopher to move into Haddon Court?

SH              It was perfect. It really went well. We had worked for a long time with Christopher about how he should become independent and what to do. And the fact that… We had to face our own mortality. We know that we are not going to be able to cope forever with all the physical and emotional challenges of having a child with Asperger’s and we had to plan for the future.

                   And so we decided that we would work towards him becoming independent. And so he knew somebody who was already living in Haddon Court, he had a friend there and so he’d seen what Haddon Court was about, and it wasn’t a completely new quantum for him. That made a huge difference. And he was able to visit, and he was able to settle in and do things at his own pace. That was the key issue.

PC              Let’s get a view here from Launa, who I understand helped with the transition. So Launa, former wartime general and later US President, Dwight Eisenhower, once said that plans are worthless, yet planning is everything. Does this rather paradoxical statement apply to planning transitions for families?

LN              Yes, certainly. Planning and communication are key. With Christopher being a very capable young man, he didn’t need the extensive transition that some individuals… Like building the rapport with staff or complex routines that staff needed to learn. He was pretty much ready to go, he knew what he wanted. And as Sally said, he’d already seen what we had on offer at Haddon Court.

00:09:38

                   But there are other aspects that need to be considered, especially with young people with Asperger’s or Autism, that aren’t always immediately thought about. Things like being clear about what’s needed to set up your own home.

                   So we made it clear that the flat that we were offering Christopher was partly furnished. So we made it clear that there were white goods available to him but everything else, from curtains to absolutely everything, needed to be sourced by him. And Christopher was fortunate enough to have a very supportive family, so mum and dad mostly helped him with that.

                   But we do always offer other resources to young people, such as Freecycle or supporting them around charity shops like British Heart Foundation, things like that, to get cheaper three-piece suites and things so that they can set up their own home environment.

PC              Let’s look then at what Christopher’ support looks like. So from what you’ve said, Christopher lives in a flat that’s part of the supported living service. So that, for example, means he’s got his own living room, kitchen, and dining area, bedroom, a bathroom and so on, that he’s furnished himself. And then he also receives support from our support workers, who visit him in his flat and support him when he needs that, is that right?

LN              Yes, yes, that’s correct. Yes, so he has daily support at times that are convenient for him. We make sure that if there are certain activities that he has planned that he needs support with then we can assist him with that, like accessing the community, meeting new people.

00:11:34

                   Specifically with Christopher, as Sally said, his main area of need was in social situations because he sometimes has difficulties in reading people’s intention, which makes him very vulnerable to exploitation.

                   So it’s about trying to get him out in the community, meeting people. With him being a young man, perhaps giving him opportunities to meet individuals of a similar age of the opposite sex so that he can have, what he perceives to be, that normal lifestyle. And giving him that opportunity to meet like-minded people in safe situations, safe environments, so that he’s not going to be taken advantage of.

PC              And Launa, could you give us a little bit of detail about how exactly you fitted into Christopher’ transition to Haddon Court?

LN              Yes. So my role when it comes to a transition is mainly that of a coordinator. So I ensure that everybody knows what’s happening and try to keep them informed and as up-to-date as possible. Social workers are usually the main port of call for families but they have very high caseloads and they’re not always bang up to date with everything that’s going on. So sometimes, it’s easier if families can access me directly. I’ll always make sure that I leave a business card if I haven’t already established that direct contact.

                   I then go and liaise with the landlord, so set-up the tenancy applications and things like that, make sure that they are getting the housing benefit and things behind the scenes applied for. I’ll then coordinate with the service manager and make sure that family and Christopher is in direct contact, so that all of that, setting up the Wi-Fi, which is vitally important, can happen by liaising directly with the service manager so that they can come and go as often as they need to.

00:13:33

                   And setting up with furniture delivery, anything. Anything that you don’t necessarily immediately think of, I’ll make sure that everybody is in touch with everybody so that we can hopefully all work towards the same move-in date and it all be well-coordinated.

PC              Fab. And how long then did the transition process take, literally from… I know Sally, you said that Christopher had self-referred, but then essentially from self-referral to getting everything ready and putting the kettle on and being completely done with that transition, how long would that be?

LN              Unfortunately, in Christopher’ case it was quite an extended period but that was because we didn’t actually have any voids at Haddon at the time, so the service was full. We did have some people that had intended to be moving on from the service and Christopher and his family were obviously aware of that.

                   So we went ahead with the assessment and then he had to be placed on a waiting list, which is why communication was even more key because obviously, that was a very anxiety-inducing time for Christopher. And I know that Sally and dad felt that anxiety coming from him.

00:14:49

                   So all we could do was keep everybody very well-informed, letting them know as we were progressing through those stages. I think that there were some minor repairs, some redecorating that needed to happen once that individual had moved on. So we were just being very careful to try and keep everybody updated as frequently as we could to try and make that a little easier.

                   And as soon as the flat was available, then we were coordinating those visits so that Christopher could really see what was happening. Because I think that was very important to him because he was getting told a lot of stuff, he was being informed of a lot of things but he wasn’t seeing what was happening. It wasn’t very tangible for him, so it was a very difficult time for him.

PC              There’s a studied observation that most people… If you ask someone how happy they are on a scale of zero being miserable, ten to being delighted, most of the time they’ll tell you seven out of ten. And I bet as I’ve said that, you might be thinking, oh, it’s probably about the same.

                   But Sally, regarding your Christopher living at Haddon Court, how happy would you say you feel about that, about the support he receives today compared to how you used to feel when he was previously receiving support at the shared house?

SH              11. No, seriously, he absolutely loves it. I was in yesterday visiting him and he absolutely is just so happy and so content, it’s wonderful, and that takes so much stress off me. It makes such a major difference to me, knowing that they are dealing with anything that might arise and that he is happy there and that everything is set up the way that Christopher is happy. That makes a difference to me. I hadn’t realised how stressed I was until he actually moved out and now it’s like, I’m free as a bird.

00:16:47

PC              I see. Some parents we speak to, I’m guessing you might fall into this category, are surprised that their relationship changes a lot once their family member moves into a supported living or a residential service. So for example, we’ve heard people say that their parental bond has changed more to friendship, away from say, caregiving.

                   So how would you say your relationship with Christopher has evolved since he moved into Haddon Court?

SH              It’s certainly far more relaxed because I’m not worrying all the time about how he’s going to respond to any given situation. I would say we’re much closer than we were. It’s still early days, of course, because he’s only been there for less than a month, but certainly, already things have changed for the better. Much more relaxed, much more friendship than, as you say, a mum and son.

PC              And how often do you visit, or how often does he want you to visit?

00:17:52

SH              He’s already got a bed settee so that when I want to stay overnight, I can do so. I haven’t taken him up on that offer yet, I want him to learn a bit more independence yet. I have been going every few days but he can always phone me if he needs me meantime. But I’m trying to give him a chance to be independent and to be an adult in his own right, rather than being mummy chasing him up all the time.

PC              And as you said, it’s early days but have you already seen more and more signs of Christopher embracing this independence?

SH              Oh, yes. Absolutely. His flat is spotless. If you had seen his bedroom here at home, the difference is phenomenal. Before, forget it. If I gave him a duster, he’d have wondered what it was for. Now, he’s washing up and he’s cleaning and he’s decorating his flat in the way that he wants and he’s just so much more confident and so much happier in himself.

PC              It sounds like a lot of it is that sense of ownership, isn’t it? It’s like, this is my space and [inaudible].

SH              Absolutely.

PC              Launa, we know that every transition and move to a supported living or residential service is completely unique but what are some things that transitions like Christopher’ have in common with others? As in, are there any common emotions that are expressed, common concerns, common happiness?

LN              Yes, some of the common emotions obviously are hurt, [?] anxiety. It’s a very difficult time, the fear of the unknown, the fear of that change. There is often an element of sadness, especially when children are moving out for the first time, that can be a difficult time for parents.

00:19:55

                   But obviously then, that happiness of being independent, of developing, of moving onto that natural progression in life and reaching that milestone of moving on and getting your own independence. Sometimes there can be emotions of guilt, which is completely natural. Feeling guilty that, maybe we’ve held him back or her back, or maybe feeling guilty because they’re so happy that the child has now moved out, but it’s all for the right reasons. That happiness is because parents are watching their son and daughter move onto that next natural stage of their life.

                   Usual concerns are… A question that I often get is, how are these people that don’t know my son or daughter going to take care of them? Are they going to do as good a job as I can? And quite simply, the answer is always no. No support worker is going to take care of your son and daughter like you can as a parent.

                   But the great thing about the Lifeways support staff is that they know that. They know that they’re not going to be looking after this individual as a parent, as their own son or daughter, they’re looking at them as an individual that they are going to help support to progress and be independent and do it themselves. If you don’t sweep your floor, we’re not going to come and do it for you. We’re going to encourage you, we’re going to motivate you, and we’re going to give you that empowerment to sweep your own floor.

00:21:35

                   So that is something that is often concerning for parents immediately but as soon as they see that development and they see that reward and that person taking pride in their own space and their own self and developing ambition. Wanting to level up in a sense. Wanting to, okay, I’ve achieved that, what else can I do? And that’s very rewarding, both for the individual and for their parents.

SH              I think what Launa said is really important. The Lifeways staff are wonderful but they are staff. They don’t take the place of the parent. The parent is still there to be the parent. The care staff are there as care staff and that’s something that’s very clear, certainly to Christopher.

                   It’s very clear that I’m always here, I’m at the end of the phone. He can call me in whenever he wants me but we’re working together as a team, he, us as parents, and the Lifeways staff, to do the best for him and help him to progress.

PC              And Sally, from this conversation, I’ve gathered from you Sally that there’s definitely been, in the last few years, to put it very mildly, a learning experience. Probably in some cases, a very steep learning curve. What would be one or two pieces of advice that you would give to other people in your situation or in Christopher’ situation?

SH              Firstly, admit your abilities. Admit firstly that you’re getting a little more mature and you’re not able to deal with things forever. You do have to plan. Planning is absolutely crucial. Ask around, ask other parents who have offspring in care or in supported living, what their experiences are. Look around and plan and organise and take things slowly. Don’t rush anything. And also, the transition is absolutely crucial.

00:23:49

PC              That certainly sounded, from the way that you said, it’s some very hard-won truths, I might say if that sounds right. And the last question I’ve got here is really just for both of you and that is, from your own perspectives, it’s the wrong word, but what’s the endgame here in the case of Christopher and his support?

                   We don’t want to put anyone in a box but what would we normally expect people to achieve where they are, hopes and goals and dreams? Whoever could open the floor there to whoever wants to say anything.

SH              Golly. Now, Christopher has some quite interesting ideas of what he’d like to do in the future. He’d like to run his own media empire. I don’t expect that to ever happen but if it does, then well done him.

                   I think the big thing is to achieve his potential, whatever that is. He certainly is quite able in a great number of ways but he still needs support emotionally to make sure that he’s safe and that he knows what to do in any given situation.

LN              One of my favourite expressions is, aim for the moon and you’ll fall amongst the stars. So I think that if Christopher aims to be the CEO of a big media empire, then I think that’s fantastic. If he doesn’t achieve that, then I know that he will be very well supported to come close to that.

00:25:39

                   But when I assessed Christopher, I saw that there was excellent potential for full independence and I think that would be a huge goal from our point of view, from a support point of view. Just watching him walk out those doors one day to live in the community completely independently after building those life skills.

                   Knowing how to keep himself safe, knowing how to manage the emotions of others as well as controlling his own emotions, I think would be a huge achievement. I think that would be wonderful for him.

PC              Aiming for the moon and falling among the stars, definitely words to live by. So I just want to really thank both of you for taking the time to appear today on this podcast and thanks for speaking to me.

LN              Thank you, Paul.

SH              Thank you.

PC              And thanks to you, the listener, for tuning into this episode of Yes to You, the Lifeways podcast. We’ll be releasing new episodes all about adult supported and residential living every month. So if you haven’t already, please do subscribe. See you next time.

00:26:40