Podcast Episode 14. Knowing when to take the stabilisers away, and not just on a bicycle, is key to moving towards achieving an end goal.This is the view of Jackie, mother to Joe who has additional needs, including a speech and language disorder.
Jackie explains what works for Joe is repetition and chunking (breaking tasks into chunks) so that they are never too daunting and that achieving the task is realistic. Of course it is easier if it’s something he likes doing but even if it isn’t Jackie talks about the using rewards and sometimes resorting to negotiation to get things moving.
Providing support for each small step along the way brings small successes. Achieving even a small goal builds Joe’s confidence and helps him feel ‘grown up’ enough to try more things. Jackie recommends this type of approach as well as figuring out the end goal and then working backwards by breaking tasks up into easy to do parts. Then, and this is so important, trust yourself to know when it’s time to take away the stabilisers.
[.30] – All about Jackie and her son Joe
[1.40] – Developing independence skills through repetition
[3.20] – Using visual aids
[4.00] – Utilising your negotiation skills
[4.40] – Using computer games to build confidence
[6.00] – Taking away the support gradually
[7.40] – Working on relationships in a safe environment
[9.00] – Developing those relationships skills during holidays
[12.30] – Starting new friendships can be hard and will only come with time
[15.45] – When Joe turns 16
[17.30] – Dealing with a young person’s vulnerability by helping then learn responses
[19.00] – Trusting your own judgement when it’s the right time to the stabilisers away
Using chunking and repetition
Find the right time to take the stabilisers away
DEBRA: Welcome to this week’s episode of the Journey Skill podcast. This week we’re talking to Jackie whose son has additional needs. Welcome, Jackie.
JACKIE: Hi Debra.
DEBRA: Tell me a little bit about yourself, where you are right now, how you get here?
JACKIE: Sure. I am a mom of two, I have Joseph who’s 13 going on 14 and Millie who’s 10 going on 11. I’m also an independent support worker so I support families with additional needs’ children. Joseph has special needs. He has a diagnosis of a severe in specific speech and language disorder, epilepsy, hyper-mobility syndrome, genetic rearrangement, sensory processing disorder and he’s about no point no one on the percentile rank of tankful language. So that’s who he is and that his difficulties.
I suppose what it means to us is that what goes in and what comes out of Joe is slightly different to a regular child. What he understands and how it is processed in his brain and how it comes out again, it’s jumbled and mixed and can be crewed with frustration. It impacts on every aspect of his life; it impacts on his education, his relationships, his mental health and also his physical ability.
DEBRA: Okay, lots of different challenges. So, you’re looking at sort of him moving on and becoming more independent, what kind of things do you do to help him develop more independent skills?
JACKIE: To try and develop Joe takes a lot of repetition. He needs to be able to practice things time and time again because it takes him a long time to actually secure any kind of learning. He’s probably more willing to be independent in areas that he gets something else off. So, changing his bed and putting his washing away is really not on his top of his list. But we try and celebrate the things that he wants to do so if he wants a bar of chocolate, he has to go and walk off the shop and get it. So, that sort of increasing his independent skills. But it’s just about finding those things that he has a need to do and want to do and then allowing him to do them. So just being able to give him the freedom to be able to take that one step further.
I may have been given him a challenge. His challenge at the moment is breakfast. So he needs to prepare his own breakfast and that’s not cook breakfast, it’s just some toasts and peanut butter or it’s just some cereals or something simple as that. But, you know, he has that challenge and once he masters it, he’s usually there but it can take a good 6 months, 2 years depending on what it is.
DEBRA: Okay, so the key there is repetition?
JACKIE: Yes! Lots and lots and lots of repetition.
DEBRA: Now it sounds like the things that he likes to do is gonna be much easier, do you use visual aids?
JACKIE: Yes, I mean when he was very small, the best thing for him was pictures and it wasn’t even a mock tone picture of a stick man, it was a picture of the actual item which helped. So, to get him to school with XY&Z, he would have to have a little key ring of pictures that are all laminated and he had to check off those things that he was taken them to school and bring them home from school. He then had pictures on his locker and he had pictures in his books at school, so it was all visual because he’s a visual learner. If I said to him, “Pick up one, two, three, fourth items”, he wouldn’t be able to compute that. It’s one at a time, chunking. So yes, we use visuals, we use mock tone, we use a lot of weird and wonderful hand gestures and things like that. But also, it’s about mannerism as well because if he doesn’t want to do something and I say to him in a really lovely smiley way, “Please do it, Joe.”, he’s more inclined to do it than me saying, “Got to do it!” So, it’s all of those, really.
DEBRA: It’s a bit of negotiation, then?
JACKIE: Oh, negotiation, yes. He’s very good at negotiation.
DEBRA: What kind of things does he do to negotiate then? Does he negotiate for rewards?
JACKIE: He negotiates for rewards, yes. So…
“If I do that, can I go and buy that bar of chocolate?”
“If I make it down to the shop and back as quickly as you’ve asked me to, does that mean that I can eat it when I get home or eat it on the way?”
It’s not complicated negotiation though. He procrastinates rather than negotiate so he will find the cat distract or something to do rather than actually doing it there. Or computer to go on, he’s into computer, he likes doing Minecraft.
DEBRA: So, it’s quite into computer games?
JACKIE: Loves computers, yes.
DEBRA: In terms of independence, how do you think that helps him with that?
JACKIE: Yes, it helps because it gives him something to brag about. It gives him something to celebrate the he’s good at. We don’t allow him on to the sort of chat rooms or whatever it is because we did try Facebook once and that was just a disaster but independence because he feels more grown up. And with Joe, if he feels that he’s doing something right or he’s more independent in himself whether he’s a reason, having stabilizers on but he doesn’t realize it then he will try other things.
DEBRA: So, one part of independence leads to another for him.
JACKIE: Yes, yes. If he feels that he’s grown up enough to do X, then he would try X. And he will try again the next time because he knows he’s had success. So, it has be built on success.
DEBRA: Okay, so can you give me an example then when he had something small and he’s built on that and going on to something bigger?
JACKIE: Probably just going to shop, actually. He’s always been motivated to talk to people. He’s never been somebody who shied away from communication, even though it’s quite apparent that he has a communication disorder. But the shop thing was something that he wanted to do and we did it so we walked together and then we sort of relax behind when he went in the shop. He took certain cards in with him. If he gets tongue-tied then he can bring out the card and say, “I have a speech and language disorder so could you please help me?” And then he has a shopping list of what he wants to buy but now we’ve taken those away, so yeah, it’s slowly, slowly, slowly. And now, he’s just “Mom, I’m off down shops so I’ll see you in a minute” and that’s good, it’s fine.
DEBRA: Is it kind of scaffolding thing then that you’re talking about? Really, just building up, getting him to do something and then taking that card away?
JACKIE: Yes, yes, absolutely. So, it’s chunking it so it’s not so scary for him and it’s making sure that the end result is realistic for him to achieve because otherwise that could be really bad for him and you have to take stock I think when you want to do something like this. And we want to achieve something, like the breakfast or going to the shop or something simple or even just wearing appropriate clothes because you have to look at the end goal and then work back on that and then put things in place to support him to get to each and every step of that.
DEBRA: Okay, so he goes to the shop by himself, what other things does he do that are quite independent that he has worked his way up to?
JACKIE: Going to shops, having a cup of tea, going more milk (because he has a very milky brew), he’s happy to wander around the big supermarket by himself and find what he needs and come back but as far as trying to build relationships with people, he’s that still really, really, really underdeveloped. He will gravitate towards the younger person and so he feels the bigger person, so although that’s both independence because he thinks he’s looking after that younger person, it’s an easy cope out for Joe because of the language difficulty isn’t there.
DEBRA: What things do you have in place to try and help him with that? Do you have any strategies that you’ve used?
JACKIE: For relationships, we just use our friends’ kids actually as guinea pigs. My friends who have kids that don’t have difficulties, they’re the ones that Joe practices on. Plus, his sister, he’s probably learned more about relationships from a sibling than he has from anyone else because they argue and they try to sort it out and that’s been hard to leave them to sort it out.
DEBRA: What kind of things do you think would push him; I suppose (‘push’ is a wrong word) but sort of help him move forward?
JACKIE: I think if he had a friend on, they go on a bus and go to the shops, I’d love that. His ten-year-old sister does that but he doesn’t. I think if he had a great need or want him to do and he kept asking me for it, then I would probably try and make it happen somehow but he doesn’t, he’s quite happy, Mom and Dad in his world and it’s hard to sort of pushed that away.
DEBRA: Do you think that’s because what you talked before about the independence and what once he’s been independent at one thing, he then moves to the next, do you think that would come naturally?
JACKIE: Yes, I’m sure it’ll have to come because he will have to be part of society and be part of community and we will make it happen but it’s just a case of picking each piece of life. We try and do it in holidays with Joe because he’s not home so when go away like in our caravan and that’s quite a good independence because he can have his bike and he can go run camps and do what he needs to do and go and see other people and go and try and try with other children. So, that’s a really good thing. So, we try and do things in the holidays so that there’s us to pick up the pieces if he goes wrong and to interpret for him. He needs it.
DEBRA: Do you back off then when you go on holiday and let him go?
JACKIE: Yes, much much more. He takes along his sister with him and I think what he doesn’t realize that she interprets the world for him. But he feels like he’s being the big brother looking after her.
DEBRA: So, when he goes the caravan sites, does he then just go and find friends? Or does she help him?
JACKIE: Yes. She usually if you watch them, the scenario is that they go over to the playparks, swimming pool, whatever there is kids hanging around and Millie will find a friend easily and then Joe will tie along and if Millie’s friend that she’s found also got a friend then he’ll tag along and do that as well. So, that’s usually how the introductions happen. Because what has happened in the past is if he’s interactive with boys his own age, he can’t keep up with the processing, what the speed of what they’re trying to do; the game they’re playing, the rules. Football and team games have never been part of Joe’s life because it just works too fast for him. So, being on a swing and being something that is quite simple; running around the field and playing it is a simple thing to do. So, he does that but usually with younger child.
DEBRA: So, he feels more mature and more grown up because he’s protecting someone?
JACKIE: Yep, he’s looking after them and he’s got a huge amount of empathy for a boy of his age. He will look after make sure that they can walk properly, talk properly, get what they need and he go over the top really and other parents think it’s wonderful because their little child, their little toddler is being looked after by a very able 14-year-old. So, it’s nice for Joe because he gets that praise.
DEBRA: Building confidence.
JACKIE: Yes, yes it does.
DEBRA: And maybe in time he’ll then work up to someone slightly older.
JACKIE: Yeah, let’s hope so.
DEBRA: Possibly. So that’s sort of a big challenge then, isn’t it? The next steps in independence. Walk us through sort of 5 years’ time, where would ideally, you’d like him to be?
JACKIE: Yes, so he’d be 19. I think I can see him still in educational training. I think he probably be doing something that is a practical job as something where he’s learning on the job, perhaps getting qualification while he’s going along because sitting in exams is going to be very hard for Joe. Or something perhaps outside. I’d love him just to earn a wage and it could just be a very nominal wage that he brings home but that would be superb. And I’d love him to have a friendship group that he independently sorts out and he independently arrange to see because at the moment that doesn’t happen.
DEBRA: You mean his own sort diary?
JACKIE: Yes, or even just to say to me “Mom, I’d like to see John. John says he’s around on Tuesday because I faced time him, can we see him?” And I would say, “Great! I can facilitate that, that’s not a problem.” He has got a mainstream friend here from his old school who lives a few miles away and we get them together but it’s always me saying, “Can you Facetime him? Can you arrange this? Will he be at so and so that we’re going to be at the same?” So, I hope that will come. I hope he’s part of the community. I hope he has some sort of job and I’d love to think that he could drive because that would just give him a huge of independence.
DEBRA: Okay. How do you think you can help him then, you say you organize his relationships and friendships, how do we help them do that themselves, you think there’s a way?
JACKIE: That’s a really hard conundrum I think for most parents that got kids that have communication needs because they don’t know how to stop those relationships. It’s not like you and I that can say, “Well, I’m moving to a new area and I’m gonna find a club at the village”. Because one Joe doesn’t really understand what his interests are, so to seek out what he enjoys would be maybe Minecraft, so he doesn’t understand social communication niceties. So, if he did turn up to village all to do flower-arranging, they would find him odd. And he would not want that kind of rejection so he probably wouldn’t put himself in that place.
DEBRA: Okay. When you say odd, is it just because of the way he interacts?
JACKIE: Yes, because he talks differently because he doesn’t have the same grammar and the amount of words that we have. He can’t process quick enough so the conversation we’re having now would be far too quick for Joe to understand. And also, he doesn’t have the social appropriateness. So, he has a wonderful charm that wants to cuddle and squeeze absolutely everybody but of course, that was quite cute when he was sort of 7 or 8 but now, he’s a big hulking 14-year-old and it’s not quite so appropriate to squeeze and touch people. So, he’s in people space.
DEBRA: Have you tried to sort of talk to him about that?
JACKIE: Yes, yes. I mean because Joe’s very black and white, gray areas don’t really mean much to him. When explaining things that are definitely wrong and Luke and I will come down, like a ton of bricks on certain things that he must not to do. “You must not do this; this is not allowed.” And that’s that. So, at the moment, we’re still with that. We’re still agreeing to that and but yes, there’s no gray area. Gray areas are really confusing.
DEBRA: Which means that he can’t be appropriately affectionate in a situation which demands it as supposed to situation that doesn’t demand it?
JACKIE: Yeah, yeah. He’s 14 and kind of 14 year-old-boy and he has seen a lot of information about what he should be doing as a 14 year-old-boy and his body is changing, he’s supposed to have a girlfriend and obviously in relationships at school happen all the time, so he finds that probably the most challenging thing in his life at the moment because he does not understand that he can’t be as tactile with girls as he used to be because it means something different now and the more able the girl that he’s cuddling, the more she will probably find that strange.
DEBRA: Have you talked to him about that sort of…
JACKIE: We’ve talked to him and again it goes right back to the beginning where I’m saying about repetition is the key. Joe will learn these things I’m sure but it will take him a lot longer to learn the niceties of an appropriate necessities of life than it would most kids.
DEBRA: Just got back to what you were saying before about him wanting… because he seen everyone else’s as 14, thinks I’ve got a girlfriend, how do you talk to him about that? Does he come home and say, “So and so has a girlfriend.”
JACKIE: One of the first things that we found out about Joe and what he understood about sex was that he was taught that when you were sixteen, you’re allowed to have sex. So, he wrote down that “When I’m sixteen, I’m having sex.” So that’s him black and white, no gray areas. I don’t quite know how it’s gonna happen. I don’t wanna know but that’s how he feels and it progresses. And he’s good in the fact that he understands that sex is about relationships and about the loving relationship of two people and he’s really great with boy-boy, girl-girl, girl-boy, whatever it may be that works for somebody. He hasn’t got any problem with that! That’s quite simple for Joe. Two people together in a relationship. But yes, sex and what he should and shouldn’t be doing, his body is working wonderfully but the cognition behind what he should be doing with it is something that he needs to catch up.
One of Joe’s biggest challenges is his vulnerability. And because of his development, he’s very vulnerable, he doesn’t understand a sheep in wolf clothing. So, if someone’s got a walkie talkie, they’re perfectly fine. So that is something that Joe’s gonna have to learn big time and pretty soon.
DEBRA: So how would you teach that though? Because that’s almost…
JACKIE: I don’t know. I really don’t know. Any help on that would be great because he doesn’t understand laughing at and laughing with him and that’s has got him to trouble before. So, he is vulnerable, socially vulnerable but as he’s getting older, he’s obviously vulnerable to other things that could be part of his life and his independence. The more he’s independent, the more he could be open to that vulnerability and that’s what scares me as a parent.
DEBRA: The most.
DEBRA: Because as you say, if you’re black and white like he is, then walkie talkie is okay.
JACKIE: Yes, walkie talkie.
DEBRA: I think that would be the same for my daughter as well. It should be very similar because she’s almost got that script that if it’s someone that looks like they’re in the position of power, then you have to listen to what they say.
JACKIE: If you said to Joe “There’s a man in a car with a puppy. Do you want to go?” and that’s the usual scenario, he would say “Yes, I want to go in there”. But if I said “There’s a policeman in the car and the mommy’s been hurt”. Of course, he would.
DEBRA: But then, a lot of children will be taken by that. So, is almost just giving them warning, signals check? Because that’s what you would say to another child, you’d say “If that happens, you always phone Dad.” You almost have a script for everything.
So, you if you’re going to give everyone a tip for parents in similar situation looking to help their young person become more independent, what would the one thing that will stands out to you?
JACKIE: Take the stabilisers off. You have to do it in a way that you think about it first because I’ve made mistakes where I’ve taken stabilisers off and thought “Oh just going to do it!” and it has gone wrong and has put us back a while. So, you have to have timeout to talk to somebody whoever it is that supports you, in my case it’s my husband. We have to talk about what the next thing is that we’re taking the stabilisers are for. Take some timeout to work out exactly where you want them to go next and do it, so it’s scaffolded. Also, just celebrate what they can do. If you can make them feel good about celebrating what they can do, then hopefully they’ll go up to the next step.
DEBRA: Okay, Jackie thank you very much for your time.
JACKIE: Thank you.
DEBRA: So, my key takeaways this week are about chunking and repetition. Those are seemed to be something that if you do that, then it helps young people to learn what they need to learn day in an efficient way, as an efficient as you possibly can be. And also, take the stabilisers away and I think that means that in most cases you need to think about the right time to do that and when is appropriate and talk about how you can do it.
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