Podcast Episode 11. Andy, father to a son with ASD and ADHD, takes a strategic view of independence, rather like a business plan. Because he does this, he and his wife have a clear vision of what they hope their son will be able to do age 21.
If their plan needs a little longer to be achieved, Andy is ok with this. He says, ‘Being a kid is just a 15 year period of their lives, but they are going to be adults for 50 years.’ It doesn’t matter if his son takes more time to achieve the same independence as his siblings.
But by focusing on where we want our children to be at 21, it’s a much longer plan. It relieves some of the frustrations we all feel by being in a hurry for our children to reach the same milestones as quickly as other children. Small steps with low expectations but with long term goals with high expectations is a balanced approach that we could all learn from.
[.45] – All about Andy and his son George
[1.15] – The role of siblings leading by example
[3.00] – Planning for the long term
[4.45] – Setting up challenging scenarios to learn coping behaviors
[7.25] – How independence actually decreases vulnerability
[8.15] – Using routines
[9.50] – Long term objectives come from the short term strategies
[12.20] – The dilemma of holding on or letting go
[14.00] – Explaining why you’re pushing them toward independence
[15.00] – Going at their speed
Small steps towards long term goals
DEBRA: This week we’re talking to Andy who is father of George who’s 16 and has ASD and ADHD. So welcome, Andy!
ANDY: Thank you.
DEBRA: Tell me a little bit about your background, yourself, your son, your family?
ANDY: Okay. Well, George is the youngest of four children. We got a 30-year-old, a 21-year-old girl, a 18 year old girl and George 16. Yes, large family, eldest son’s now left home. Basically, we discovered George’s issues quite early on. We were fortunate at the nursery he was at, picked him up when he was around 3. So, he had an early diagnosis and so I guess the point is when we refer into independence, the fact that George had three siblings that he could use as role models, I think that is quite important.
DEBRA: What kind of things that they do to help with him?
ANDY: They led by example, basically. So, we explained to them, even though at the time by themselves were quite young, Phoebe who is the closest to George was only 5 but totally took on board George’s diagnosis. And we sat them down and explained that what it meant it was going to change our lives, clearly. But they were very good at rallying around George in helping us in the early formative years to set examples, really, of what good looks like. So, they bench-marked, the behavior, the expectations.
DEBRA: When you say you sat them down, what kind of things did you say to them because it must be quite hard to explain?
ANDY: I think at the time, we just explained it to them that it’s just behavior issues and so that’s why it was important for George’s independence moving forward to see what good looks like, basically, from the other three. Being a kid is a very, is just a period of your life, 15 years of your life. What perhaps you’re trying to do is to make these kids into adults where they’re going to have 50 years. And so if you’re focusing on where you want them to be at the age of 21, then it’s a much longer-term plan than trying to get them to just be independent for 6-month period before they grow mature in something else because they’re all very short-term goals and you’re completely changing your down expectations fortunately every 6 months whereas if you’re focusing on or as he is 21 years old. Even though he might only be 5, you think “What is the behavior I want from him as a 21-year-old? What type of independent characteristics do I want to see?” And when something you’re thinking like that to the 5 or 10-year-old, you’ve got more time to plan the strategy. Whereas if you’re taking the short-term look right, he has to be doing this by the time he’s 12 to overcome the transition, let’s say from junior school to senior school. Which is yes, it’s important but don’t ever lose sight of the long-term independence.
DEBRA: I see. What you’re saying, really, is that you set the long-term goal: This is what I want him to be when he’s 21. If the hasn’t reached a certain point by 14 or 15, I’m not going to worry about that, I’m going to think I’m still gearing towards 21.
DEBRA: So, what goals would you have for him when he’s 21 then?
ANDY: Well, that’s interesting because it’d be nice to think that he can commute, a big brilliance to think, he could be dropped off at the station. We’ve clearly got to overcome the scenarios where the strikes, delays, timetables don’t work because if they’re in a routine and that’s thrown out later, that is asset test of independence. Can they cope with change? I think that is the biggest challenge because they can’t, in a nutshell. The minute the timetable, the routine gets thrown out, that’s when they panic and I guess part of our strategy will be to simulate that alteration by deliberately dropping him off two minutes after train left the station, perhaps. And so you have to try to teach him how to read timetables, to read through maps to understand stations perhaps where that is going to, to find the station he really wants to go to and then join the colors up from the chamber.
That, is an ultimate goal but you have to let it time and time to increment steps and the way we’ve done it is just by giving him the experience so he gets what it’s going to be like but I’d be honest, it’s really, really difficult getting him to focus. He doesn’t understand. “If you’re with me, why do I need to do it?” That’s quite a challenge because you’ve got to bait it to teach to be independent but if you are there, he doesn’t think he needs to learn to be independent because you’re there. He hasn’t worked out but you’re not going to be there every moment of the day.
DEBRA: Does he now have the desire to be more independent?
ANDY: I think he talks a good story but when first comes to a shaft, I think he needs that reassurance that you’re there which is why we continually practice.
DEBRA: I think what you were saying before was interesting as well about putting in place, I guess, challenges for him, so the train not being there. Is that something you’ve tried yet?
ANDY: Not deliberately. Whenever we have got into those situations, as you going to plan it’s just like I’ve heard things like, for example, put him on the track but then get into the carriage alone, just watch him, see what he does. Now I haven’t done that yet but I’ll definitely be doing that this summer.
DEBRA: But it sounds to me that it’s something that you wouldn’t to do for your own child.
ANDY: The way I see it is you have to deliberate trip them up, it is mean but it’s in the controlled environment.
DEBRA: Mean is probably the wrong word, but I’m thinking that it’s something that I want to do, I would do it and I think I agree; I think it’s a very good idea and I would do it with y daughter as well. But it just feels like something that it goes against natural parenting, doesn’t it?
ANDY: But there is that saying: You got to be cruel to be kind. And ultimately, the goal is at 21 of age: can commute to a job. And if you achieve it, one of those…
DEBRA: The pain is worth it.
ANDY: Absolutely. It is because ultimately the pain would be even greater when he’s 21 if he can’t do it. Because let’s be honest, we’re doing this for them because we don’t want George living an isolated life in a bedroom watching tv screen. We want him to interact as best he can with society. Rely less on strangers than perhaps they would do if they weren’t independent.
DEBRA: That’s a good point, isn’t it? You don’t want them to be relying on people, they might take advantage of them.
DEBRA: So, the more independence we give them, the more they are able to…
ANDY: Absolutely. Because unfortunately, there are people that will see them as opportunities to exploit. So, the more independent they are, the less chance there is of them being prone to those people by relying them.
DEBRA: Commuting is always seeing a big thing as part of work, what other things do you want him to able to do independently that he’s working on?
ANDY: Well, actually, Deb, it’s been fantastic getting him into routine. So, routines help independence and so showering, getting himself ready, get himself dress for school. We still have to lay out his clothes and I think that’s more helpful. You just still have to say to him, “Come make your own breakfast.” So, at first, we would go down and have the bowl with the cereal in it so all he had to do is add the milk. And then, week of week, you just leave the cereal, pack it out with the bowl. And then the cereal pack would be in the cover and just the bowl out. And then finally, there’s nothing out.
At the over the course of the couple of months, he’s gone from having it or ready to go and you just undo one step at a time until eventually just saw that George come and sit for breakfast. I mean it’s exactly the same but he still has but there’s still this type of things that we’ve done same with cleaning the teeth, dressing himself, showering. They are all processes but you have to take small steps at a time. We don’t have high expectations (it’s a basic advice). If you got lot of expectations, he’s going to be frustrated and disappointed because it’s more chance of happening.
DEBRA: You mean low expectations for an individual task as suppose to…?
ANDY: Yes, absolutely, no not lower. See, have high expectations for longer term plan but don’t have those high expectations and quick wins, they’re not just going to come. So have a lower expectation of the speed that they can learn things, the strategy has to have sufficient time allocated to it for success to happen. I mean, he speaks like a business plan, isn’t he? Long-term, short-term strategies. But long-term strategies at 21, he can have reasonable element of independence but to get there, there’s a bite-sized strategy that build confidence and build a profile of independence.
DEBRA: In some ways, that goes against everything that we get taught with children which is they have milestones and you have to reach a certain thing: we’re here…
ANDY: Society is full of setting the milestones. We’re living in a extremely competitive society where there’s a race to Mikey’s the first to read a book, Mikey’s the first kid to write his own name. I don’t get caught up in that, I mean I’m the most competitive person but I’ve don’t feel so insecure that I have to force my children to be the first to do at thing. The will all learn. And I think this is the benefit of having 4 kids. You know, if George have been up first, we might be having a very, very different conversation but because we have three before George, we realized that You know what, they’re different but I will achieve top it’s a different time. None of the first three reads the same target at same age. So, when George came along, we just re-calibrate the dials. We had no expectations of what he had to do things and understood because again, one of the advantages we had with an early diagnosis, we changed our expectations a lot earlier.
Some people that aren’t fortunate enough to get a right diagnosis must have a lot of time comparing their special needs child to everybody else, not realizing that he’s a special needs child. I’m wondering, why is my child is not doing XY&Z? But of course, that’s maybe again even worse if it’s their first child. Whereas, we’ve been fortunate enough to have three, we understand life isn’t perfect and you’ve just got to go with the flow. Set target. Sometimes, the times goals are excessive and they achieve the target before they get there. That’s a fantastic win, celebrate the win. Congratulate yourself actually and congratulate the child. I think it’s important they know that they’ve done something. So as a parent I guess, the idea is that you’re trying to put space between you and them, so that they’re not always looking to you to do what they have to do.
DEBRA: It strikes me with the kind of things that we’re talking about really is that as parents we’re pushing them to be more independent. Whereas with other children often as they learn to this age, you’re pulling them back and hoping that they’ll stay with you and they’ll talk to you because they’re never home. And I find that, I’ve got two daughters so the older one is clearly away and try to move away and we’re sort of going, “Come back, come back.”
ANDY: That’s very, very true. Because you don’t want your kids to grow up too quickly and you want them to go through youth and you want them to enjoy it, so you hold them back from becoming adults as long as you can. But with the special needs child, with George, it’s the exact opposite which is quite…
DEBRA: Yeah because I think you are thinking trying to push them to be more independent because, as you say, it’s a long-term goal and you want to be able to help at those steps.
ANDY: Well, I think as a parent you have different style where you want all your kids to be and every base and every set will be different. And of course, Phobe and Millie were ahead of the baseline so we would them pull them in the back. George is behind the baseline and we’re pushing him forward to. But the baseline, it is a very personal thing that every set of parents just gonna have a different definition of. But say you have to do it to your own baseline, I guess, but yes, that’s all what it is.
DEBRA: I do that. What we’re doing at Journey Skills is about independence. Is there one thing that you can give advice to another parent because you’ve got a sixteen-year-old boy and as a dad, what’s one piece of advice that you would give to help them on that journey of independence?
ANDY: I guess it’s trying to explain to them the reason you’re doing it without it sounding apologetic almost.
DEBRA: What do you say to him?
ANDY: Well, it’s just like, the worst thing you can say to George is “Look, Georgie one day I’m not going to be here to be doing it for you.” and that’s wrong. It’s wrong but it’s ultimately, in your head as a parent, that is where I’m at because one day, I’m not going to be there for him. He needs to know that he’ll cope without us. So, then you start thinking “Am I doing this for George or am I doing this for me, for my conscience?” I guess the answer is a little bit of both, really. So, my advice would be: Don’t get too wrapped up in your own goal setting. Just try to keep the whole thing to a level the child see is appropriate and don’t rush it harder than that child wants it to be rushed. Be patient, I guess is the advice. These things take a lot longer than you expect and don’t push it harder that the child wants to go.
DEBRA: So, you talk to us as well about setting long term goals, I think that was useful and then small chunks or small steps. So, when he’s 21, hopefully commuting to London? Would you like him to live independently in his own place?
ANDY: Well, I don’t want any of my kids at 21, so no. But yeah, ultimately, I want him to be able to live on his own, to drive would be a nice option. To basically, to go out to a pub with couple of friends, he can do it, not a problem. But I’m really sticking out to know that to get him there in the next five years. It’s going to be very difficult. They’re probably 3 years behind where everybody else would be, I guess with George’s diagnosis. So, we’ll see. Having the goal doesn’t mean if you don’t achieve it, you fail. It just means at least you’re going in the right direction.
DEBRA: Okay. Thank you very much, Andy for your time.
ANDY: Thank you. And best wishes to anyone who’s going through what we’re going through because I wouldn’t change it, to be honest.
DEBRA: My key takeaways this week. Well, small steps and long-term goals. Basically, have low expectations for your small steps and then have high expectations for the long term. Set those long-term goals and take the time to reach them and not expect that you’re a going to reach them as quickly as maybe you’d like to but one day you will get there.
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