Jocie and Dave: Life Project

Welcome to the Loved Called Gifted podcast.

This is your place to come for musings about spirituality, identity and purpose.

I'm your host, Catherine Cowell.

C: This episode I'm with Jocie and Dave Twine and we're actually at New Wine in Shepton Mallet in their awning.

So it's really nice to have you with us.

J: Thank you.

C: Do you want to introduce yourselves?

J: Yes certainly.

My name's Josie, I'm married to Dave and we've got a son with autism and learning difficulties and semantic pragmatic disorder which is a speech disorder.

He is now an adult and we've had an interesting journey with him.

Love him to pieces but it can be challenging.

C: Yep.

Do you want to say anything Dave?

D: We've also in our journeying been in both Cardiff and Bath and whilst in Bath we met with other parents, other Christian parents of children at the time, or young adults, with special needs and actually that was where we ended up forming a charity because we were all passionate about ensuring a Christian community for our children where there would be worship that was accessible, where they would be given value in what they were doing and also because we were all scared what would happen when we died.

All of those things were a real driving force in wanting to make sure that our child was part of a community that would continue.

J: We formed the Life Project to do a number of things to bring worship to people with special needs and to have time together that we could worship at a level that you know they wanted to engage in and people that could come and talk to them on levels and also just to meet as a group and do things.
So we have events on, we've had curry evenings are the favourites, sometimes have quizzes and just bring us together and then we can also talk to other parents and we'll sit round and sort of moan about what's happening, come up with ideas and it also makes us a community in ourselves.

We've got support from not just families because often your wider families don't necessarily understand a child with special needs and they've suddenly got a grandchild or a grandson with different needs and it's them also getting used to that.

My parents have come along to some of these events and just talked to other parents and suddenly realised that actually what was happening was quite normal.

And it does become normality because most of us have gone through the school stages and the time of having your child diagnosed is quite hard and I think we don't, as churches, support parents around that particular bit.
Usually parents have got the diagnosis by the time we've met them but actually going through that can be very traumatic because you don't have a child thinking I'm going to have a disabled child.

C: No.
So how old is Josh now?

J: Josh is 25 years old.

C: Does Josh have brothers and sisters?

J: He has a sister, yes.

C: Yeah, and how old is Josh's sister?

J: 24.

C: So you had two quite young children at the point when you realised that Josh had additional needs. Or had you already known?

J: His language was the first thing that I noticed.

I'm an occupational therapist, I qualified as an OT and worked as an OT in special schools.

He could name any noun.

We thought he was a genius to start with because he would name things that other little 12 month olds wouldn't say.

So we had bottle and flask and cup.

It was great.

Some of the things he would say, computer.

But he could never put a sentence together.

So we had just nouns because they were things that he could see.

So we ended up taking him to a speech and language therapist to try and work out how we could increase his language and things like please and thank yous and up please rather than just objects.

And they diagnosed him with something called semantic pragmatic disorder.

C: Yeah, so do you want to tell us a bit about what that is?

J: It is a language disorder on the autistic spectrum.

And they develop language in a very different way to how normal children do.

And it's all based on real things rather than the joining words.

C: Yeah.

J: So he ended up under speech and language therapy.

And they were trying to help us to help him to develop some of his skills.

So he was having regular sessions and would be given homework to do with him.

And over the time that improved, but he was still very concrete.

He still talked about concrete things and had multiple tantrums when things didn't go right.

He would drop to the floor and just be sort of almost overwhelmed with what we're trying to ask him.

And like a lot of autistic kids, Thomas the Tank became a major part of his life.

He seems to be a real thing with lots of kids with autism.

They really get into them.

I think the faces don't change too much.

And when they do, it's either a smile or a frown and there's no in between things.

And he just used to watch lots of that.

And he developed some of his language skills through watching TV and watching Thomas the Tank and various other things.

So there is a place for Thomas.

C: Yes, Yes, definitely in your household.

J: We've got the entire collection.

C: And can you remember what that felt like? That sort of process of realising there was something wrong and getting to diagnosis?

D: Josh was our first child, so we didn't know any different.

The diagnosis, I think, helped because it gave you some hope that there was techniques, there were tools, there were things that could help you with his development.

Whereas thinking you've just got a naughty child, other people thinking you've got a naughty child.

So, yes, a diagnosis is helpful for giving you that scaffolding for knowing, being able to learn.

But of course, a child's more than a diagnosis.

So a couple of things from Josh's early years that stuck in my mind was about semantic pragmatic disorder.

When we said that a blue square was blue, that didn't mean that a blue circle was blue. Blue referred to exactly what we named as blue, which was a square. But also the way he learns language isn't like a text file, he learns it like a sound file.

So he will play with different languages. So The Lion King, he'll know the same phrase in 15 different languages because YouTube provides that comparison.

And I remember we would be walking and he'd say, "Oh, Dad, let's play Guess the Language." And I'm thinking, "I'm not as well equipped for this game as you are."

I told a support worker about this.

So the support worker said to Josh, "Shall we try this in reverse? I'll speak a different language and you see, you can tell me what it is." And he spoke and actually Josh just said, "Can you say that again? And he said it again and he knew it was Polish.

C: So you've talked really pragmatically, Dave, about the advantages to having a diagnosis, that it gives you some scaffolding, it gives you an idea of kind of what's going on, which then can help you to negotiate stuff.

And also you've talked very pragmatically about the fact that the diagnosis doesn't tell you everything.

But you also said, Josie, that you feel that people need support around that process because there's kind of two edges to it, isn't it?

That your child doesn't change at the point when they get a diagnosis, but quite a lot of your understanding and your expectation shifts.

J: Yes. Yes, it is hard when you get a diagnosis because you just hope it's a phase they're going through and they'll catch up or there'll be some other explanation as to why you've got this.

And then when you get a diagnosis like autism, it's like, that's lifelong. That's not about just giving him extra support for it, like handwriting - you can practice it and then suddenly you get better at it.

Josh just learns in a different way.

And it's about us tapping into the way he learns so that we can help him develop the skills he's got.

Now, he is a musician. Music is the thing that drives him big time. And his singing is pitch perfect. He has an amazing singing voice. He can hear a tune and then sing it back to you. And it's just amazing.

So he has some gifts that are now being used in church because he sings at church with the group there.

And he belongs to something called Music Man, which is, I think it's a national thing where people with additional needs, they do have like a choir, but he often gets solo parts because his voice is quite good. And it's a pleasure to hear him sing.

C: Yeah. You talked to me about the kind of the audio file thing and that ability to kind of hear details and then replicate them and remember them.

And I was a speech and language therapist in my previous career and had a particular interest actually in semantic pragmatic disorder.

So that's, I've not been doing speech and language therapy for quite a while. So that was a thing I've not talked about for years.

I remember somebody who was autistic talking about how she understands words. And she said you might have a, for example, about trees.

<Hi, Josh. What are we cheering about? I think it's the party bus, Josh. It just went past us, you know the one with the flamingo on the top? Yeah. Yeah, it's just gone past.>

C: Whereas you and I might have a generic idea of what a tree is and then you can apply it to lots of different trees. She said she always has like those old sort of roller decks. So every tree, almost every tree needs to have its own page. So these are all in the category of trees, but kind of generalising from that becomes difficult.

D: I quite often have conversations with people about what is the learning disability that goes with autism. And I quite often talk about how Josh's working memory has to be so full in computer terms. He has so much data to wade through that it takes him longer.
The only reason I can do it quickly is that I've forgotten half of it. Or I've got smaller files because they're text files or they've got generalised detail or what have you.
I don't think he's processing more slowly. I think he's got so much more information, both of what he's seen. I mean, we haven't mentioned his eyesight.
You know, he could spot a bird of prey a mile away and name it correctly. And we're saying there's a speck over there, I wonder what it is, you know, and his mapping skills, again, are formidable.

C: So he could probably tell you details of things that you have long forgotten years and years later.

J: He remembers everything that we've done and he'll be able to recall it.

D: And in fact, one of his favourite games is 'Let's play remembering things'.

C: I’m guessing he wins.

D: Yeah, he does. He does. And we have to confess to not remembering at times.

But I think also that part of his security is replaying things from the past.

So we're here at New Wine. He enjoys the worship. He enjoys the vibe.
But that is a huge amount of information that he's taking in.

And so the early afternoons, we're here in our caravan because he either wants to sleep or to watch familiar videos and just to sort of ground himself again.

J: This is where Thomas the Tank comes in.

D: Thomas the Tank comes in very nicely.

C: So the other side of that ability to remember detail is that most of us negotiate life by forgetting the detail but being able to kind of consolidate it into a general idea about things.

So you won't remember every single time you've been to a McDonald's and what you had and what flavour shake and whether they'd remembered to have the crayons there.

But you will be able to predict how McDonald's works because you've kind of built up this schema for it.

D: A friend of Joshua's, when they talk about a date of something, he'll say, "Oh yes, well that's when this episode of Top Gear was shown and this was the guest in a reasonably priced car."
The memory for the detail and what they hang things on is amazing really.

C: What impact does it have on Josh's life, his difficulties?

J: I’d say that he's quite well balanced.

He has a lot of things going on in his life and he has a lot of things that he does and a lot of things he engages in.

So I don't think he knows what he's missing or what he could be missing.

I mean he's never going to get married, he's never going to have a relationship with somebody else other than the family.

He has friends but he doesn't have that ability to form like a special friend or a special bond with somebody.

He uses us as his base all the time. He has tried moving out into a supported living place and that didn't work.

And when he was asked where he wanted to be, it was wanting to be with us. And without consultation he came back to us.

It took a while for him to settle. He's with us now but I think he's still a little bit unsettled from that time. And he does ask if he's going to be living with us and he's staying with us. And we've said yes for the time being but we're very aware that there's going to come a time when we're not going to be able to look after him because of our age and him still being quite young.

So we need to, again we're also having to think that one step ahead about what's next for him.

He has employment, he has lots of daytime activities and he's quite a busy young man.

He plays the drums, he actually plays the drums very well. He's got his own drum kit which our neighbours probably know quite well about.

D: I mean Josh does know that he can't do things on his own.

He'll say I can't do that because I'm not independent. So probably the biggest impact is actually on us.

We want him to have as full a life and as rich a life as he can. But in honestly that at the moment that depends on us being willing to support him to do that. So the impact is twofold.

We actually build relationships with parents of other adults with special needs.

We actually get to appreciate some of the smaller things in life much more than other people.

So when you don't have that great an opportunity or freedom to do things, when you do you think woohoo, we can do this. You actually give thanks for that.

J: Music Man. Music Man is one of the things that my son goes to on a Saturday morning. It's a sort of choir for adults with learning difficulties. But we love it because he's a Saturday, we get to drop him off at Music Man and then we go to Costas.

Which apparently is quite normal. And take the dog for a walk. And take the dog for a walk,
D: Without Josh
J: yes, without having to watch Josh one end and the dog the other.
There's a lot of things you do appreciate.

And times like the camp we're at in the moment, it's amazing.

They've got such a good special needs provision that it makes this an enjoyable experience for us as well.

C: Yeah, yeah. New wine are particularly good at that, aren't they?
Yes, we've found that as a family, that it's been an absolute gift over the years.

J: Yep. And just having a moan as well.

C: Yes.

J: Without feeling that you're moaning because they actually appreciate that you, because they're going for it as well.

C: Yeah. As you were talking Dave about those experiences of friends ringing up and saying, "Do you fancy coming out?" And you needing to say, "Well we can do it between this time and this time."

I was thinking that actually for all parents that is the reality when your kids are really small. And then as time goes by, that shifts, doesn't it?

So there is the sense for you that what would have been your peer group, in inverted commas, are sort of moving on.

D: We have friends that pop to Prague for the weekend.

C: Yes.

D: We have friends who go to graduations.

Facebook is kind and cruel, isn't it?

So we have friends who we keep in touch with and we see the way that their lives are. We see their children, not all, but some children moving on and gaining independence.

There's a difficulty of sounding like a martyr and I don't mean to do that, but we plod on.

C: Yeah.

D: That doesn't mean that we don't miss some of the other opportunities and things like that. But it's not something that we begrudge.

J: No.

D: I remember someone saying, "Oh gosh, your life's really hard, isn't it?"

And I said, "Well, no, no, it's quite intense. I don't want to describe it as hard.

We get to appreciate different things and it's different and there are times that we're very tired or something like that.

But, you know, hard is refugees. Hard is people who are in war zones.

We've got incredible support in this country and we must never forget that we're not thinking we need to support a child with special educational need or we need to feed the family.

We don't make those choices.

J: No.

D: We know of people in other countries who do.

C: Yeah. Camping opposite you, as we have been this week.

My sense has been that yours is a very peaceful family, that there's a really good understanding between you both, between Josh. There's a sense that he's very comfortable in his own skin, that you all know how new wine works.
We met up yesterday and you were a bit bored because Josh was having a nap and there wasn't much to do whilst he was having a nap because you need to be here when he wakes up.

But there's a real sense of peace around that and I'm wondering what the journey has been to get to that point and what are some of the sort of challenges internally in you that you've needed to face to get there?

J: Well, there are a few things. I mean, we're good as a tag team.

Before we had kids, we worked in a place in Cardiff called Ely, which is quite a rough estate with a lot of street children and we loved it. Absolutely loved the kids and we've still got quite a few of them on our Facebook pages that we talk to even though they've now got their own kids. And they refer back to us and say, "I remember when you took us on camps and did all those sorts of things."

So we had a big grounding with a lot of people with different needs in that sort of environment. And I think having our own children and having Joshua around, he is challenging but we've also kind of built a back store from that.

We got some of our ideas from working with other children and finding out what worked, what didn't work.

And Josh was with us when we had these, he was very little, he was about three, and the children absolutely loved him to pieces. And they would really look out for him and they'd also help him to do things he struggled with. So he's had a lot of other people around us and church has been amazing.

Church has been great. We've not had any, not too many problems, we've had a few issues but not massive ones. And church has been quite welcoming as a whole.

I feel that a lot of people feel open to be able to come to us and say, "Why is he doing that? What is this autism thing?" It's not what we thought it would be. Rain Man is the one that people go to with his genius and we're like, "Mmm, that doesn't happen."

And also I worked in the field so I kind of knew what we'd got as an occupational therapist. It was, "Thanks God, didn't ask for this one, could have given us a heads up there.”.

D: I think you're right that we are quite a peaceful family, but also we have to be a peaceful family, because otherwise Josh will pick up on any emotion.

And he can misread grief for anger.

J: Which he did.

D: So the second year we were here was the year after my mum had died and actually one of the things that is an issue with parenting an autistic child is that we couldn't grieve.

It's hard to show, I mean, if you get cross, Josh gets crosser. He reflects back.

We had huge support from Breathe. We grieved at the back of Breathe.

And what I would say now is that we're content to make use of Josh's routine. So we go to the family worship. So we're there at quarter to nine. Then Josh goes to access. We get time in Breathe. We have the afternoon where it's much more chilled. And then in the evening, again, Josh is cared for and we're able to go to worship. And then because Josh wants it, and we're not that against it, after chips we get an early night. And actually we do need that as well.That's our pattern.

Along with meeting up with old friends, and you, of course.

C: So part of the gift of the life that you've got now is that you have to take it at a slightly slower pace.

J: Different pace.

C: Different pace. Yeah.

J: It's not slow. You still have to watch out for him. You still have to make sure that he's got the things he needs to be able to pace himself. So he's got CDs and things like that.

So we have a pattern here which we've built up over the years because we've been going for a number of times.

And yes, what they offer here for special needs is amazing. It's really good. It's really supportive.

D: Some of the things that are more difficult is when things have to finish or change.

So Josh was able to be part of the youth provision for adults with special needs that's here. But then that ended. And the question is, what next?

And at home it's the same. You know, he's school, college and now he's needing to have work placements and what were after school, after college clubs.

Around 25 they end looking for other things.

So we're really lucky that we found another organisation that does supply things.

The school holidays used to be a nightmare because everything, all the social things as well as others stopped.
And so one of the advantages of Josh being an adult is once we have transitioned him into those things, they can more or less tick on the whole time.

C: Yeah. Yeah.

D: And that's great. But we do currently end up being a taxi service quite a lot of the time.

C: Yeah. So what do you do about the fact that you need to be quite, at least on the surface, really quite level and quite peaceful? Do you have spaces where you are able to kind of process your emotions or go and rant?

J: Pretty good at talking to each other about it.

It's our time in, before we go to sleep at night, we might have a bit of a whinge to each other about things that have gone wrong or what we should do next. What our next plan can be.

If we've hit a bit of a brick wall, we tend to kind of mumble through those to start with. As you're going through the kitchen, what about, you know, have we thought? And we'll end up sort of coming up with different ideas and throwing them around for a while and then decide to at least try one route and see what goes. And our thinking as to why that might work as opposed to that one.

So I think actually having a really good relationship with your partner or my husband in this case, but it's really essential. And knowing that we've also got support around us.

My parents are amazing, but they didn't quite get autism for a long time. And the same with your parents, really. They know the words. They know what it kind of looks like. But as to living with it, it's different.

It does affect everything you do in life, everything you have to do or do together. You have to plan and re-plan. And sometimes that's you don't realise how much you're planning until someone else says, "Oh, good grief. It took you that long to get ready."

C: Yes.

D: One of the things that actually Josh seeks when he has been upset to help him and to help us is that he suggests that we pray about it. And albeit we have to do it in strict rotation. Mum first, then me, then Josh.
But he does. He will make use of prayer. He may repeat a prayer that he's heard and therefore we've heard lots of times. But he will change the odd word. And it may sometimes be only through that that we learn that this behaviour was because he was concerned about a friend and he didn't know how to express it. And so the way he expressed it was through frustration, through anxiety.

But it's only then when he's gone through this cycle of behaviour and is beginning to come down that we can use that. And at one point in the last New Wine, Josh actually used worship songs to help himself to come down, to behave.

So when Josh is helping himself, we're able to do the same.

There are things that Josh does without us that does mean that there are times that we are able to talk and pray together.

C: Yeah.

D: Sometimes you just have to have times like New Wine that stock you up because sometimes you are the tag team, as Josie said. You're sometimes you're on the go.

J: At Dave's church that he works at, they have a toddler group and one of the mums has gone down the process of an autistic diagnosis for her toddler. And Joshua comes in and helps out with that.

And she was like, if he turns out anything like Josh … I don’t need to it to carry on - it was lovely.

C: Yeah. Yeah.

J: I think when you first have a diagnosis for your child, it's good to be around other people who understand and maybe have walked it as well.

C: Yeah.

J: Because it's one of those things that once you get a diagnosis, you know it's for life. It's not like an illness or a...

C: Yes.

J: And you're never quite sure which directions it's going to go or what disability your child would have because the word autism can cover a lot of things.

C: Yeah.

J: And then also on top of that, it's whether they've got a learning difficulty. So it's kind of like layers on things. And on top of that, they've got sensory difficulties.

All autistic children will have, but a lot of that is not registered.

So you see children not wanting to wear certain clothes or stripping. And it's not about their behaviour being bad. It's about the fact that the clothing makes them itch or it's too tight or it's... And there are certain parts of autism, part of the diagnosis that isn't talked that much until suddenly you've got a child who is taking clothes off in the middle of public because they can't cope.

It can make a huge difference to the way even as a parent approaches it.

If you know that you wouldn't... if a child's limping because they've broken their ankle or done something, you don't screen them to walk properly because you know they can't.

C: Yes. Yeah.

J: It's almost that sort of thing. They're behaving that way because there's an underlying reason.

If we deal with that, if we work on that, you won't see that problem as much.

And autism is just peppered with those sorts of things.

C: Yeah. Yeah. You're speaking with great passion about supporting other parents. Has that been a growing call?

J: It was part of my job to start with.

As an occupational therapist, I worked in special schools and that's my baseline, that's where I've been.

I started off with adults with learning difficulties who were in the old institutes. And it was my role was to move them out of the institutes into their own houses.

And I just learned so much through that, through working with those.

They were now adults to elderly almost and they'd been in this environment since they were four or five.

As soon as a child was diagnosed, they got put into a space because there were no school provisions.

And that just really hit me that we moved on for that, but we need to make sure we really have moved on and we just don't create lots of little institutes.

I feel that we could do a lot more as Christians across the world to minister to these children who can’t… I mean, the Romanian children, the parents couldn't afford to keep them at home because it means they couldn't work and there was no benefits or anything for them at that time.

But it must be lots of other places and people needing things that they can't get.

Even in this country, there are things that their parents might not understand about their autistic child and therefore see it as naughty when it's not.

There is training out there, but you need to be able to get it.

C: You started to talk about the Life Project. So what was the moment that you thought this is what we should do?

J: I think it was a progress. It was one of those things that kind of, we knew there were other people with children, young adults, well, most of the children at that time, had special needs. And we knew not all churches are really switched on to how to do that.

They'll kind of say, we'll accept them.
C: Yeah,
J: they can come, but they don't always behave the way the rest of the children do.
They don't sit still.
They don't sing in the right places.
They might not get up.
They might throw things at you.

The idea of the Life Project was to be able to do things with other parents as well.
So we'd be there as like a support network for each other and we could winch to each other and know that they weren't going to judge us because they're going through it as well.

We've got about 25 families, I should say, people with learning difficulties plus a few and they bring friends.

And we meet together and it's just a time that we'll sit with each other and we'll eat.

And we talk about how, you know, what works for us and what doesn't work for us.

So a lot of my friends now are putting their autistic kids in sleeping bags to sleep because that pressure helps calm them down.

Weighted blanket cells should have gone through the roof and I think I deserve a cut of that.

From this we've started our first housing.

So the Life Project has benefits as well as housing.

And they're supporting Christian people with disabilities to live but also appreciating their faith.

And we have evenings, social evenings, but also we have worship evenings together.

And then they take it back to the churches that they go to.

C: Much earlier you were talking about the fact that you have a concern about what happens when we die. So is the housing project kind of connected with that?

J: Yes, there was some of that.

It was about making sure that our young people with disabilities would have somewhere to go and that we would feel happy with that situation.

And we also want them to honour their faith because Josh has a faith. He has an understanding of God. Okay, it's his understanding.

And he listens to things and he gets little bits of things about being, like some of the parables he gets. And he understands more about being nice to people. Good Samaritan, he's talked to me a few times about what that meant and how we have to help other people. And he may have a simpler version of it but he certainly has an understanding of it.

And same with other sorts of things that he's heard at church.

He'll come and ask you about it and say, you know, 'What happened in this story? Lying was the other thing.' And we said that's not telling the truth is. You know, what actually happened. And we had a time when he'd say, 'It's not a lie!' when he'd tell us something. We'd kind of go, 'Really? No, it's not a lie! Are we sure?'

C: What are the things that helps Josh to feel close to God?

J: Singing, I'd go for. He has a superb voice. He was gifted with pitch perfect. He hears it, he can repeat it and he will tell people if they hit the wrong note.

C: And you get the real sense of some of his best connection moments.

J: His gifting is singing. He is a beautiful singer and he can sing like the person. Like Ed Sheeran was one of his. You'd put them on together and you wouldn't know who was singing what. He even pitches his voice the same as the guy does.

And he loves singing. He absolutely loves it and he becomes part of what he's singing.

It's a real gift.

And drumming.

C: I was going to ask about that.

J: Yeah, he drums. We've stupidly bought him a drum kit.

He will put music on YouTube and he'll drum along to it.

And he's very good. We tried to give him lessons but it didn't work. So he does it by ear. It's a gift.

Thank you God - it could have been a quieter thing.

C: Yeah. And what about, I was going to ask about your faith and how your parenting journey has shaped that.

J: Well there was a lot of conversation with God when we found out that Josh was autistic.

Yeah, we adopted Joshua and our daughter because we couldn't actually have children.

So we'd already said that we would like to have our own children but we'd also like to adopt a child as well.

But God had a different plan.

So we decided to go down the adoption route.

And we started, you know, we just filled out the forms and waited for the responses.

And Josh was, you know the story of the child before they come to you.

But Josh was very young. He was three weeks when we had him.

C: Wow.

J: So he was a real baby baby.

Because obviously at the time when we had him there was no idea that he had special needs at all.

A tiny baby gives you no clue. They don’t come with a tag on their foot saying this one's autistic.

He was only, as he developed, noticing that things weren't quite maybe how we thought the book said. But being a first child, who knows, everybody develops differently.

Like I said, he spoke in nouns. So we were kind of going, he's quite clever.

C: He knows many nouns.

J: Oh, but he's not joining them. And as for things like hello and hi, that didn't come into it because hello isn't a thing.

C: No, it has no purpose.

J: It doesn't. Shaking hands does. Shake hands would get that.

C: Yeah.

J: And he would come up and shake hands because that was a thing.

You're kind of sitting in your head going, well how else does that work? What else is he going to be picking up on? What else is will it - what's real and what's not real? “hello” is real, but it's not because it's not a thing.

That was his first diagnosis. And then, I think it was five when he actually got diagnosed with autism.

D: But we didn't know before.

J: We did know. We'd already sussed at that point that he was that way.

And he's tactile defensive, so he struggles with textures on his clothing on his body.

So he's in track suits and t-shirts. Labels used to have to be cut out. He's got used to those.

But he doesn't like things that are tight on his body, so everything has to be soft.

C: So I was asking you kind of how your faith journey has shifted or what impact your parenting journey has had on your faith.

J: I was cross.

C: Yeah, absolutely. How long were you cross for? Are you still cross?

J: No. Not now, but it's kind of when you've gone through the IVF route and then you get an autistic kid at the end.

But I think that was a plan.

I think that if we hadn't had Josh, we wouldn't be where we are now. Well, we definitely wouldn't be where we are now.

And I think that I love my life now. I mean, I've always loved, pretty much loved my life.

But I'm saying this is, we're here and we're content with what we've got.

We love Josh's pieces.

We've now been in a community of other people with special needs.

And there's something amazing about that group of people.

And loving and giving that you often don't see in other places.

There's lots of forgiveness in the disability world.

There's a lot of love out there as well and a lot of looking out for other people.

And it's almost the world that I think God would have wanted.

That's the one that he would have got.

With a disabled child, there is a lot of gifts that they bring and they're willing to share.

And that some of the things that we don't see with us as a non-disabled group, is that often we keep things to ourself and overthink things.

Whereas, I'd say Josh thinks and says almost in the same breath.

C: How has your image of God shifted?

J: Got a few questions for him.

I think he's still a loving father.

And there's also, a bit of me definitely feels that God knows what you can handle. And sometimes we don't know what we can handle. And I think Josh was meant for us. But at the time I wasn't happy. Because I knew what processes we'd go through. But God got it right.

And because of being part of, having a disabled son and now being part of the larger disabled world.

It's an amazing place to be in.

If you haven't been part of it, you should get your act together.

It's just, there's more loving and giving and forgiveness that you see in the special needs groups.

Because they've had to be through, they've gone through a lot more than most of us have.

Even from a younger age.

They've had to face things that other children don't.

And their life has been a bit tougher.

And I'm not saying they don't have their difficulties, they do.

But the groups of people, certainly the Life Project that we've been part of, they're an amazing group of people.

C: What about you Dave? How would you say your faith is different now, at this point of the journey?

D: I don't know that it has changed that much.

My sister died when she was 20, when I was 18.

And I kind of had to make my mind up, pretty much there and then. Whether what I'd learnt about God was still true.

And with Josh, my understanding is that God doesn't make life easy for you. God is with you in the struggle.

And I think that actually, my experience is that you feel closest to God in the struggle.

Because it's like, I don't need God when the good times are there. I'm not saying we don't need God when the good times are there. But that's often the way we think.

So there are struggles in life, but I don't think for either of us there have been struggles in faith.

J: There's been questions.

D: Yeah, there's been, yeah, yeah.

I'm privileged to be able to work in a church.

And there are times that I've taken the Psalms literally and gone into the sanctuary and shouted at God about things.

J: And you haven't got kicked out yet.

D: Yeah, I haven't got kicked out yet.

What has it done? It's made it more real.

C: So it's really been a case of living through that decision that you made very early on. Which was about the fact that God is with us in the midst of the struggle and that doesn't necessarily mean the struggle's going to go away.

D: Yeah, and God being there doesn't mean, yeah, it doesn't mean it's fixed.

God is with us.

J: Both of us had a childhood where we had other things happening.

D: I think it's fair to say that we are both carers/rescuers.

J: Yeah, it's changed our life.

If I'd started to write what I wanted, this wouldn't have come into it.

C: No.

J: But I also know that's also the joy of being part of a bigger group with people with special needs.

That you've got the other parents who are in the same book as you and you can also winch to each other without them thinking, "Oh, my word." Because they've walked the same path. Sometimes we don't appreciate each other as much as we should.

C: Yeah.

J: Maybe we tell people the nice stories and forget all the, you know, we got punched a lot because we're trying to get them in the bath.

Those are the things that we almost carry without discussing it.

And I think we should be able to go to each other, "You know, I've just had a whole load of, I've been showered on with hitting because of I got the wrong bread." Or, "I got something," you know, something that people don't even think could cause an issue.

And I think that's the other side that when people think about special needs, often it's Down syndrome, they see Down syndrome or cerebral palsy and don't see that as the front.

When actually, there are so many other things in the back that we struggle with.

C: Yeah.

J: And what else is needed to support that person? And it's a full-time job.

And it can just drain you sometimes.

C: Yeah.

J: And churches hear you and they go, "Oh, you're doing ever such a good job." And there might be taps on the back and the hugs I've had saying, "You're doing really well.

Would you like to take him for the afternoon?"

D: Every church we've been part of, Josie has ended up helping with the children with special needs, which is a gift.

But that then means that she's not getting fed.

And that's both from Josie being happy to have a role, but the church also thinking, "Well, someone's got experience of it," can do it all.

C: Do you feel like there's anything that you would still like to say?

D: One thing I'd like to say is that part of our thing is to see not only Josh, but also other adults with special needs in meaningful occupation. Meaningful as in useful, productive for them.

Josh volunteers in a cafe at a church, my church, and is normal for adults with learning disability to be part of the volunteers in the cafe. You can imagine Josh knows almost everyone by name that walks into the cafe and greets them. And for those people to be recognized and known is amazing.

C: Yeah.

D: So yes, there are the times to need to withdraw to regulate, but there are times to be active and part of.

C: And that's very much what you were saying earlier, Josie, about your work helping people to integrate from institutions into society and asking the question, "But do we still keep these people to one side rather than acknowledging that we are all part of the same community and that includes everybody?"

J: Yeah, I agree. Yes, I think I've seen that side of it and it wasn't pretty.

Everybody needs somebody that loves them. And if you're dumped as a special needs person somewhere, you almost need extra love because you need to work out what life is about. And that was what was missing.

Care was there, but there was no love.

C: Yeah.

J: I think now having also had a child that's gone through special needs education, there is much more understanding and much more love out for people with additional needs.

And not everybody understands it, obviously, because there's a lot of people who still stand back and say, "Oh, doing a very good job."

C: Yeah.

J: But there is more understanding or willingness to be part of something.

And I feel that they're more included in community.

And you see, sort of, costers now will employ somebody to clear the tables. And they think more about what they can actually do rather than all the things they can't do.

And I think that that has started to also change thinking so that there are more people out there who they can be employed to do things that they can do.

And yeah, it's huge.

I mean, also, taking it back a bit, my mum used to work in a place called Bell Orchard in Lebry.

And that was where all the people with special needs got put straight away. And it was, well, she said it was awful looking back on it now. But there were lots of, these were now adults with special needs. And there was no, they just lived in there. They weren't even allowed out on the streets. And that just sounds, that sounds horrendous.

So we've come on so much in so many years. But we need to also move on again.

C: Absolutely. Absolutely.

J: Sorry, Bell Orchard. I think it's closed now.

C: We're still living with that kind of fairly recent history, aren't we? And so moving from that takes time.

J: And also the memories of people because they'll still be living. We might have got them out of those places, but have we helped them through it?

C: Huge trauma.

J: Amen.

C: Thank you so much. Thank you so much for the conversation.

D: Thank you.

J: Thank you.

I have to go wake Josh up now.

C: Hope you enjoyed this episode of the Loved Called Gifted podcast.

If you'd like to get in touch, you can email lovedcalledgifted@gmail.com.

You can find a transcript of this podcast at lovedcalledgifted.com.

And that's also the place to go if you're interested in the Loved Called Gifted course, or if you'd like to find out about spiritual direction or coaching.

Thank you for listening.