Podcast Episode 16. Everyone’s journey is very different but sometimes listening to someone else’s journey can help us on our own way. This week we talk to Carol, mother to Leo, about her and her family’s journey with him. His leaving home is still a way off for them, but there are many small steps to take along the way with which we can all identify.
Leo has had many challenges in his 10 years, but despite this his determination shines through. Finding the right school has been key to his moving forward and finding his place in the world.
While Leo’s parents have started to imagine what his future might hold, they are also enjoying the now where he is a happy boy. One reason for this happiness has been his getting more involved in community based clubs. This is facilitated by a mentor a few years older than him, who helps him navigate not only the activities but also social skills he needs.
Carol also reminds us that sometimes we need to take on the hard stuff and by that she means those family activities that stretch our children with additional needs. By not doing this, not only are our other children missing out but our children with additional needs aren’t being given the opportunity to surprise us.
[.45] – All about Carol, Leo and their family
[1.40] – Leo’s school journey
[3.00] – The achievements to be celebrated
[3.40] – Using reward systems
[4.15] – Sleeping issues
[6.00] – Current challenges
[9.00] – Ways to move forward and will cooking food lead to eating food?
[10.15] – Using holidays to aid learning
[12.00] – Enjoying the now
[14.45] – Using clubs to build confidence with the right mentor
[17.30] – Taking on the too hard things
Choosing a school for their future
DEBRA: This week we’re talking to Carol. Carol has a son with additional needs and his age 10. So, Carol’s very much at the beginning of families’ journey into independence for him. So, I’d like to talk to Carol, get a little bit about her story and also what she’s supposed to in term of her young man’s future and where she’d like might to go. So welcome, Carol!
DEBRA: Tell us a little bit about your story, where you are?
CAROL: Okay, so we adopted Leo at 12 weeks old but we knew about his birth mother when we were even told right at the pregnancy that there were probably going to be issues with Leo’s sort of capability. The birth mom was a drinker and she took drugs during pregnancy. So he actually came to us at 12 weeks old. And I think when he was about 4 years old, he actually got a diagnosis of autism with complex autism because he has severe learning difficulties as well. So it’s very difficult to know whether the problems are to do with his autism or to do with his learning difficulties. Fecal alcohol syndrome is also he’s been under a genetic doctor for that but it’s very difficult to diagnose, there’s no test for fecal alcohol syndrome.
He sort of going to school, we try to see about mainstream schools because we kind of thought Well we want him to respite to something and if he didn’t go into mainstream then what’s he gonna achieve, how can he have a goal but we were told that his disabilities were too severe and that mainstream wouldn’t be able to cope with them. So we went to see his current school and luckily, spoke to a very lovely head of education lady who said that the majority of children that go to special school have been in mainstream first and if you like they’d had to fail. They’ve not been able to cope and therefore then go to special school whereas Leo will never have that feeling of kind of failure if you like. He won’t know any different, this will be his journey in his education and so we kind of thought Well actually that’s a different way of looking at it, isn’t it? and and so we went with that.
DEBRA: What kind of skills does he have in terms of independence now? How does
he work at school?
CAROL: Okay, independent wise, he’s limited. He has support for everything. He can just about write his name but that’s kind of his fine motor skills are very delayed so he finds it very difficult to hold a pen, for example, so therefore his kind of writing is very tricky. His reading is limited, although we are getting there slowly. I think his main problem is the concentration and how long he can sit.
DEBRA: So in terms of him doing things for himself, what kind of things does he do at home that maybe you didn’t do 5 years ago?
CAROL: Okay, so toileting. He didn’t come out of pull ups on nappies until he was 8 years old and that was a massive achievement for him.
DEBRA: How do you think you achieved that? Was that just persistent?
CAROL: Yes, we did a little, it was a nice sunny day and it didn’t really matter then we would try a little bit, obviously have loads of accidents. I suppose what you would do with a 2-year-old but he was much older. And himself, he kind of realized and as he was getting older and he was the only one maybe in his class that was still in pull ups, I think he began to notice and thought Well actually I don’t want this. I’m going to give it a go.
DEBRA: Do you think he felt the sense of achievement in that as well?
CAROL: Oh yes. So yes, we got him lovely pants and things like that and he was very excited.
DEBRA: So, was there a reward system in place?
CAROL: Yes, we did. We kind of said if he had 3 kind of dry days then there would be a treat at the end of that and then it would go to 5 dry days and then so forth and the gap got bigger and bigger until he kind of cracked it.
DEBRA: Are other things around the house that he does that sort of independent that you’ve seen him grow?
CAROL: Sleeping, we had lots of issues with. We’ve had lots of investigations into his sleep and whether there was any kind of anything going on to his sleep. I’ve had sleep studies up in London and so forth but basically that I think the conclusion was that it was more to do with the reassurance and needing us more than actually having a sleep problem. So, from the age of 18 months to about 2 years ago, he would wake up and then we wouldn’t be able to settle in. And he also struggles to get off to sleep so that initial kind of getting off to sleep and then we were given melatonin which obviously is the medication that they give to trying to get him off to sleep but obviously doesn’t maintain sleep. So, he would wake up 3 or 4 times a night and not be able to settle. So, in the end to make life easier for everyone, we would bring him into our bed and that reassurance of being with us would then settle him and he would go off to sleep.
DEBRA: A couple of things you’ve said when he has got to the age, do you think that was almost him becoming…?
CAROL: Yes, I think was him becoming more aware. Maybe more aware of things going on around him whereas before that, he was still not conscious of his surroundings and things like that whereas as he’s got older, he’s thinking about things more and also maybe his siblings were getting older and doing more, so he’s got two younger sisters. Obviously both of them are probably more achieving than he is so as they were getting older, he was wanting to be a little bit like them and so again I don’t know, that might have been something that he was kind of thinking Oh they were doing it, I want to do it which has helped in a way.
DEBRA: So, they’re nice sisters. What’s the biggest challenge at the moment with him in terms of independence?
CAROL: One is eating. I think I mentioned that right from the beginning. So, he’s never been an enthusiastic eater, shall we say. He’s hypermobile. So, he’s hypermobile in all his joints. So, his wrists, he finds it very difficult to hold the knife and fork which doesn’t help and he just doesn’t seem to have an appetite or he’ll have something, a tiny bit of something and then he doesn’t want to carry on.
We are still having to supervise meal times. Breakfast is probably the worst. He never ever wants breakfast. He is a little bit better with finger food so if you can do it himself and he would probably manage a plate of food himself but we would be having to say, “Come on, Leo. Have another mouthful.” He wouldn’t ever sit and just eat a whole plate full of food.
DEBRA: Because I was wondering whether it was the fact that the skills, motor skills were the issue because I, from my experience, my daughter was a little bit similar when she was younger. She would happily eat any type of pizza but if it involves cutting things up, it was so much more difficult and it took so much more effort.
CAROL: Yes, I think the effort on the skills is a major part but then I just think he’s not above it. The other thing is he will eat absolutely anything, so whatever we give him, he’ll eat it. As long as we put it in his mouth but I am wondering whether he doesn’t have much taste. So whether the food doesn’t taste of anything so therefore, that’s why he’s got no interest in it because he will happily put a lemon in his mouth. So, I’m wondering whether that might be a taste thing. But no one has really kind of helped us with that at the moment. They’ve just said we got to persevere. We’ve been given special cutlery to try and help and all this kind of thing but if you haven’t got the enthusiasm there, it doesn’t matter whether you’ve got a knife and fork there, he just doesn’t want to eat.
DEBRA: You think if you’re hungry, you’ll pick it up?
CAROL: Yes, exactly and I think that’s the problem. We’ve seen dietitians. He’s not underweight but he’s like right at the bottom of his centiles for his weight. But he is in proportion. He’s not at all ladder either. He’s quite short but we were wondering whether he needed supplements and things like that but they’ve said just high calorific food and just keep going.
DEBRA: He’s a lucky man.
CAROL: Exactly. He can eat chocolate without being worried about it. Apparently in school, he’s a little bit better but I think that’s because again he is sitting on a round table and everyone is there. We do try to eat together as much as a family here, that’s an ongoing challenge, shall we say.
DEBRA: And what are the skills that he needs to develop to live?
CAROL: Well yes, at the moment, we haven’t even really gone into him preparing his own food because we need him to eat it first and I think once we crack him actually having a bit of enthusiasm for food then maybe. But then again just thinking about it, that might be a way of encouraging him to eat. He’s made something himself then he might actually think Oh well, I’ll eat it.
DEBRA: Yes, because certainly at school when you sense that he’s a little bit more, slightly more enthusiastic because of the peer group pressure and that you maybe right. It maybe useful to get him to cook or to at least cut things up so then he feels he’s got something he’s invested in a little bit more than perhaps just someone giving him food.
Another areas of independence skills, is he building up any of those?
CAROL: He is much better in kind of getting dressed and things like that. Although, easy things so if we lay out his clothes then he’ll do his best to kind of put them on and if we let him go and choose his clothes, he’ll tend to go for nice easy things to kind of put on. We still struggle with shoes, obviously laces, there’s no way we’re at a point where we could even attempt that at the moment. But we were wondering whether he’d ever be able to get his clothes on and he can and takes me a bit of time and things normally come back and his tshirts on back to front, but it’s on. It’s just giving him time to do it and I think that’s the key.
DEBRA: When you go away as a family at the caravan, do you find that sort of he has more time then?
CAROL: Yes. I mean we do. We’re much more sort of relaxed. We lay things out, we’ll put it in a little pond and say “Okay, these are your clothes, Leo. So when you’re ready, have a go” and things like that said.
DEBRA: And you haven’t got time constraint so you can…
DEBRA: So, a little bit of dressing and food issues, is he wanting to do things by himself? So when for example when you’re away, he is pushing the boundaries a little bit with you now?
CAROL: Yes, I think we haven’t quite got there. I think he’s still in a phase where if one of us will do it, I think he’d quite happily let us just do it. He doesn’t often say Oh let me do it, mommy. It’s normally “Can I have some help?”, he’ll happily ask for help, he’ll just get frustrated. When he’ll get angry if he can’t do something so then we obviously intervene.
DEBRA: Do you think that frustration is a sign that he is actually understating that he wants he wants to do it himself, though? Because if you get frustrated because you can’t do something, it’s quite suggesting to me that you want to do it, but you’re not quite able to do it.
CAROL: Yes, maybe. To be honest I think, sometimes he just gets angry with life in general, so it’s difficult to know whether he’s frustrated or whether he’s just in one of his bad moods.
DEBRA: So in terms of what you might see his future, what are the things do you really want to see him push forward, you want him to achieve?
CAROL: I think obviously being able to go and choose some clothes and put his clothes on correctly, personal hygiene, again he needs a lot of support with that; if he can go and have a wash his hair, clean his teeth. Again, at the moment, we’re still needing to support him with all of those.
DEBRA: Is that reminder and actual support?
DEBRA: In terms of his sort of future there, because he’s 10, so he’s got quite a number of years before he’s really got that independence, what are some of the questions you have about what might happen? You just said before about not being around which is the question, we all think about.
CAROL: To be really honest, we haven’t really thought about it. Because we feel he’s in a great school at the moment. We know that he’s going to be in the school now to he’s 20. We’ve got 11 years potentially to kind of worry about that.
DEBRA: So, you’re just enjoying the fact that he’s in the school.
CAROL: Yes, that we don’t need to think about it. And I think that’s where we’re really lucky and he’s been in the schools right from the beginning so it’s all he is ever known, really. I suppose that’s gonna be tricky for him because obviously, he will have had the whole of his education in the same school. So, he won’t have really any changes but then again, I’m sure that they’re going to prep him for that, aren’t they? And that’s the whole point of being in a special school.
We talk about it occasionally and I suppose what we hope is that he will stay in school and then… I don’t know. I really don’t know. At this point, I think he’s going to need support throughout his life unless he dramatically kind of improves and goes forward.
DEBRA: If you had a crystal ball though, what would you like to see when he’s age 25?
CAROL: He loves the outdoors, he loves being outside, he loves pottering. So, in my little imaginary world, I’d love him to be on a farm or somewhere where he can be outside with animals, having growing things and that kind of thing rather than just stuck in a room in a building in a town.
DEBRA: Would you think he’s going to live with you then when he finishes school? Would you want that or would you prefer something different, or genuinely haven’t thought about it?
CAROL: Haven’t really thought about it, no. I think, it would be nice to have a mixture of both so that he could be with us but then if we needed a break or whatever, then you could potentially go somewhere. But obviously I’m saying that now haven’t really thought about that.
DEBRA: What kind of skills you think he needs most then to be more independent? What else do you… in terms of frienships, is he good at making friends?
CAROL: School is saying that he’s very popular, his peers like him but he doesn’t really play with people. He does his own thing but people are kind of around him. So, I think that’s gonna be a struggle for him to make friendships. We try as much as we can to get him into outside of school activities, we have struggled a little bit with that trying to get the right support into the activities. For example, he goes to cubs, we were struggling a bit with cubs, they kind of gave him someone to help him but the volunteers and she was an older woman and he didn’t really connect with her and so then we kind of looked into it. So, we arranged for somebody in the villager’s older son who belongs to scouts as well and so what we do now is give him a little bit of pocket money but he goes along in his support slayer in the cubs and he loves going now. Because Mary is going to be there and when he feels like Oh, he’s a big boy and he doesn’t feel like he’s standing out I suppose but I think that will help him in the future because obviously, potentially he’s going to be having to be mixing with other people and so forth. So, we’re trying to do that as much as possible.
DEBRA: That sounds a really good way for him to develop his communication, social skills.
CAROL: Yes, and he goes with younger boys out. Not at a similar level but he can kind feel more like he can join in a little bit more. He tends to stay at the side and just watch but I think even that is better than not being there at all and stuck here at home with us.
DEBRA: So, would you recommend that way of finding a mentor or someone to support him?
CAROL: Yes, definitely, yes. Without that, he wouldn’t be able to join in.
DEBRA: So, he’s got support without it being obvious that he’s got support for him. So that’s a good thing. So, you talked about the outdoors, what do you do for that to do with him? I mean things like forest school…
CAROL: So, he did forest school at the nursery and I think that’s kind of way he’s got the liking of outdoors, but no, he doesn’t really do any activities. That’s the tricky thing is to find clubs and things where he can go along and kind of join in. He seems to be more relaxed when he’s outside and can just go off and do things at his own pace and at his own time.
DEBRA: So that’s what a long-term future. That’s what you look for?
CAROL: Yes. We probably need to work on that a bit more. I’m sure there are other clubs and things we could look into.
DEBRA: Yes, sounds very easy to provide doing all these things but actually going through the time is almost difficult for all of us.
CAROL: And I think one of our main problems is actually fitting the things that Leo needs in around our routine, day to day life.
DEBRA: While supporting him for the things that he’s not yet capable of doing. Do you think that then becomes the focus? What he can’t do rather than what you’d like him to do?
CAROL: Yes, and I think it’s very easy to say “Oh we won’t do that because Leo can’t do it.” It’s easy to say that, isn’t it? “Okay, we won’t go there because it might be a bit tricky and so forth.” Whereas in fact, those are probably the things we need to do. We miss out, we should try.
DEBRA: Does it happen? Because I can think of occaassions where we were probably be like that. “Well this is going to be just too hard.”
CAROL: Just at the top of my head, there are 2 things that we really like to do as a family which we struggle with. One is swimming. We’ve not been able to find a specialist swimming teacher. It’s an ongoing kind of battle that we’re having to trying to find him because I’d love him to be able to swim. Something that I love doing, something that we all love doing.
And the other one is riding a bike and again we’re struggling with that. We’re hoping that school are going to intervene and they do some specialist groups and cycling courses. He has had a balance bike and he’s great on a balanced biked. It’s just the peddling that we’re struggling with at the moment.
DEBRA: Is that the core strength?
CAROL: Yes, and I think that’s his hypermobility, his core being able to do it. For us all to be able to go for a bike ride again would be a lovely goal that we would like to respite.
DEBRA: Yes, because it’s quite a nice thing to do as a family.
DEBRA: Okay, Carol, thank you very much for your time.
CAROL: It’s a pleasure.
DEBRA: Key takeaways this week? Well, patience because as you listen to Carol’s story, you hear where things weren’t happening and then they suddenly did. So be patient and things will come to you. And also, I think just generally thinking about things like what school you choose, those kinds of things because really that’s come up as an issue that’s really helped Leo as well.
Learning to cycle guide
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