#054 BONUS! One mom’s story of working towards just enough support.

#054 BONUS! One mom’s story of working towards just enough support.

You can listen to this podcast episode on iTunes or Spotify.

Karen Hunt has been listening to the Good Things In Life podcast and is a member of Inclusion Academy. Inspired by the idea that her son has potential for growth if barriers are removed, Karen has been thinking about small, important, actions that she can take to support her son to have greater autonomy, choice, and opportunity.

I’ll be adding more and more of these BONUS episodes highlighting a parent’s story. Don’t miss out. Subscribe to the podcast today.

Transcript

Genia:
Welcome to the Good Things in Life podcast. I’m your host Genia Stephen. Today I’m really excited to be here with Inclusion Academy member, Karen Hunt. Karen’s going to introduce herself, but I just wanted to sort of frame why I’m really excited that Karen is here. Karen has been listening to the podcast and learning and applying, you know, her lifelong experience as a parent with all that she’s sort of tackling now and resources and thoughts and really applying this in a just enough support kind of framework which follows really beautifully after last week’s episode with Keenan Wellar on the concept of just enough support.

Genia:
So if you haven’t listened to last week’s podcast episode, I would say you know, start here with Karen, but go back and make sure you listen to Keenan’s episode as well. It’s really valuable. Karen, thank you so, so much for being willing to do this podcast and to share your story. I’m really grateful. It’s not easy. It feels a little bit vulnerable sometimes when we are talking about our kids and also just talking about our efforts as parents because we often are feeling like, you know, we’re not doing it all or not doing it all well enough or, you know, maybe sometimes doing the wrong things. And we know that very often people just don’t get it. And so when we’re talking about our experiences and our stories and our kids, sometimes it feels really vulnerable because we open ourselves up to people’s comments and things like that. So thank you. I’m really grateful.

Karen:
Oh, you’re welcome. I’ve been, you know, really helped in expanding my thinking in some of your podcasts that in our conversations we’ve had over the last year, I guess. So, you know, I’m really excited about continuing that and amazed sometimes that what sometimes sort of subtle changes in thinking can have outsize benefits because, you know, quite frankly, all of us have limited time. So kind of learning what’s the thinking and the things you can work on that are going to be the big impacts has been really a game changer for me.

Genia:
Yeah. Yeah. I couldn’t agree more. I wish I could do all of the things, but I cannot do all of the things. And so really figuring out what are the things that are going to really make a difference and what are the things that matter most is, yeah, it’s a, it’s a game changer and a sanity saver.

Karen:
For sure.

Genia:
So Karen, can you just start by telling us a bit about your story?

Karen:
Oh, sure. So my son is named Brian and he’s 26. He was born prematurely. He was actually born 15 weeks early weighing just a little bit over two pounds. We had a four month stay in the hospital. Pretty, I mean, any baby that premature is often will have a pretty rough go. He had you know, he’s on a respirator for a long time. He had also had a brain infection or an basically a yeast infection. It went to his brain. So when we got discharged, the immuno sort of the hospital basically sort of handled me a bundle and said sort of the equivalent of, “We don’t know exactly what’s going to be wrong, but there’s going to be a lot wrong and we’ll probably see you a lot.” Now on part of that, we actually didn’t see them a lot. He’s actually been pretty robustly healthy.

Karen:
And you know, well from what I was expecting, some pretty minor stuff going compared to other kids. But you know, he has cerebral palsy. I think the I haven’t had to use the official terms, but spastic diplegia. So he can walk, took so long time to get him to walk. But he walks well on flat ground. He’s, you know, got some curvature. We did the Botox, we did, you know, all kinds of treatments. He’s also autistic. He has an intellectual disability probably closest to severe if you’re, you know, rating those things. And then later in life we, he was diagnosed as being bipolar. He’s got, so he’s, you know, he’s a pretty happy adult. He’s got rudimentary verbal communication about concrete things. You know, pretty well understood by his family. Less so if you don’t know him well because sometimes you have to know what he’s talking about to know what he’s talking about.

Genia:
Right.

Karen:
He’s got, you know, some other skills. He reads pretty well. Good word recognition and that’s, you know, one of his great joys is he really likes written, written words. He likes me to write for him. He, you know, we got him going on exercise for therapeutic purposes for his legs, but now he has an absolute treadmill theme. And you know, gets great joy of that, sometimes I hours a day if he wants to. He loves the Hulk. He’s a big food aficionado. He’s got a very, very expanded palate, which you wouldn’t expect. We say when we go for sushi, we do Australian rules sushi because you have to be pretty fast to get it from, like to get your share because he loves it so much.

Genia:
I don’t know what Australian roll sushi is. I’ve never heard that term before.

Karen:
Australian rules football. It’s kind of like, no, no rules.

Genia:
Oh, okay.

Karen:
That’s what he thinks sushi is like with Brian. He’s like he got to be too fast in playing your strategy. He loves movies, books. So he’s a, he’s a pretty happy guy but he lives parents. He does not get minute by minutes provision, but he does not have the skills to, you know, go out on his own and navigate the world. So he’s, he has kind of a guided experience.

Genia:
Right. So tell me tell me about, tell me about some of the things that you have been trying recently or maybe even just some of the ideas that prompted you to change your focus on some of the things that you’ve been working on with Brian.

Karen:
Okay. So part of the change in focus, well, I’m 58 now and I’m starting to think more deeply about what’s next. And that’s influenced by a number of things. But one of which is my mother’s experience with dementia Alzheimer’s. And realizing that for her, by the time we realized she was having problems, she was having a lot of problems. And sort of thinking myself as a parent thinking like, you know, I really need, I’m not going to have necessarily, you know, 15 year years notice on when I’m not going to be able to do this well for Brian. I need to be getting things right for him now. So that, you know, I will, we’ll be, he’ll be set up with the right kind of life. So the amount of time to get it figured out has been, you know, sort of pressing on me.

Karen:
So I was casting around and I found your podcast is one of the things. And some of the things that really started me thinking, like sort of emphasizing things that we hadn’t had a lot of focus on because we’ve been working on skills all life was a couple of different ones that I think we’re really, really influence. Al Condeluci is talking about social capital. And then Erin Sheldon’s the one that really struck me was when she was talking about using augmentative communication for choice. Now, it wasn’t the augmentative communication part that influenced me so much. It was the choice architecture and the importance of setting up experiences so that people, you know, basically could have a more adult experience with making choices in their own life.

Karen:
And then that led to thinking about, “Okay, well if Brian was living not with me, what are some of the things, what are the some of the skills and experiences he needs to have in order to make that a better experience?” Like what are the things that he might not, if he doesn’t have a certain skill set or if he’s not used to doing certain things, might make the either his options for living with his parents worse or the richness of these experiences worse. So those were the kinds of things that were, you know, were, but I was thinking about, and then some of the things we were talking about in the podcast really led me to think about, “Okay, there’s some, there’s some things I should start tweaking. And how can we do that?”

Genia:
Right. So tell me about that. Tell me about your approaches to tweaks.

Karen:
Okay. So, well, one of the things that I was starting to think about, we were talking to some other parents about, you know, with our, how could we set up our children for you know, living without us. And pretty much everyone was like, “Oh no, my kid’s going to need, you know, 24/7 support and whatever.” And so I started to think about, “Okay, well what are some of the things that if Brian could do for himself, might lead to having more options in his living situation?” So currently he, you know, will take a shower, like men got to take showers. And his mom helps him with his shower. And I, I, you know, time to get a shower. You know, you’re pretty, you’re pretty dirty. And I help him into the shower stall because he’s got cerebral palsy. So he’s a, he’s a little bit unsteady and if it’s wet, he’s pretty cautious.

Karen:
And then I, you know, turn the water on, make sure it’s not too hot. And then I use, we help wash him and help him out. All those kinds of things. So I was thinking like, “Well, you know, it’s, when you’re in a supported living situation somebody helping get your meals is one thing, helping you shower, that’s a whole different level of help. What if he could do some of this stuff on his own? So I started thinking through that. And I was also influenced by something I think Erin Sheldon had done about the least [inaudible] or presuming competence. And one of the way she talked about it was not just in the way I’d always thought it’d be before, was presuming people have the skills. It was more around the what do you need to do to set them up, to have the skills.

Genia:
To remove the barrier.

Karen:
To remove the barriers. So, for example, on the showering, so, you know, what I’d like to do is for Brian to be able to go like, “Hey, I want to shower”, then have a shower. So I started thinking through that. So some of the things that I did were I looked at the shower mechanism and said, well, you know, I could install a temperature limiter in the shower.

Karen:
That way, even if his dexterity isn’t good or you know, or, you know, if I, if he’s not able to finally adjust the temperature, I know it can only go so hot. And that’s a thing that if you had your own apartment, you could do that too. So I did that and then we looked at the shower and the knobs were a little, you know, it hadn’t been, hadn’t, knobs are a little bit crusty, so it’s kind of hard to pull out. So I got those replaced. It was easier for him to pull it up himself. And then we looked at, we had a removable shower head because, you know, sometimes when I’m, especially when I’m helping him, you know, you need to get it down, but it’s hard to get back up there. And so, you know, it sprays all over the bathroom if he tries to do it himself.

Karen:
And that’s the kind of thing that if someone else who maybe wasn’t his mom was doing it, they would just say ‘Free and I’ll do it for you.”

Genia:
Right.

Karen:
So I found magnetic shower attachments. So basically all you have to do is kind of get it sort of close to where you want it to be and it snaps on.

Genia:
Right.

Karen:
So, some of those things were around, “Okay, how can we get it, make it easier for Brian to do this under his own steam?” I then looked at stepping in and out. He’s a little bit hesitant about that. So I got a bunch more shower [inaudible] that sort of grips that you attach by suction. So just placed them in a place where he could steady himself so he could more easily step in and out. So those were all things, you know, he’s not doing it all himself, but it’s much more able to do it. And we’re slowly working towards that. I’ve got some more ideas, but one of the things I’ve finding already is that he’s telling me he needs to shower more often. And you know, used to be, I get him in the shower and he’d be wanting to turn it off right away. And now I find it like, he’s standing there and he’s standing there. It just like.

Genia:
Enjoying the shower.

Karen:
[Inaudible] And standing there enjoying a shower. So it’s the kind of thing where I, you know, I started out sort of thinking about, well, you know, what are things that, you know, normal daily activities that one, be nice if you know, might give him some options if people didn’t have to help him with. And two, I know how much I like going to have a hot shower when I want to.

Genia:
Right.

Karen:
So what if, you know, setting out to big I you can go have a hot shower where do you want? And these are all things that, you know, it’s not limited don’t things that only I could do with you. This is if you’re setting someone up to be in a situation which isn’t with your family, nothing I’ve done isn’t something you could, you could already do. So it may take us a long time before he’s totally, “Yup, I’m going. You know, I’ve decided to have a shower and then I go when I come”, but we’re closer than we were two months ago and that’s a pretty great thing.

Genia:
It is a great thing.

Genia:
Hey, I just wanted to take a minute and thank you if you are one of the many people who has provided feedback by rating and reviewing the podcast on iTunes, by sending me an email or a message on Facebook or Instagram. I really appreciate it. It makes such a difference to get your feedback and I read every single message. I am over the top, grateful for your kind words and encouragement. All the ratings and reviews are also really important in getting the show in front of other parents who are passionate about supporting their kids to have good inclusive lives. So if you haven’t already, please head on over to iTunes and subscribe, rate and review the show and share the show with friends and other parents on your Facebook page and in your parent groups on Facebook. Listen. Together, we’re better. We can’t do this alone and we shouldn’t have to. Subscribing, rating and reviewing the podcast is pretty straight forward. There will be a link in the show notes for this episode and that will walk you through the process. It will take you less than one minute.

Genia:
And I mean, I think there’s, there’s a couple of, there’s a, there’s many, many implications to immediately come to mind. Although these are not necessarily the most important. This is definitely not the most important, but even just those small variations or small decreases, I mean in the amount of support that Brian needs to get in another shower also opens up tremendous a lot more volume or variation in what kind of support might work for him if he was on his own. Right. So for example even just something like the physical size and strength of the person who was assisting him is now the, you know, there’s a lot broader options for that.

Genia:
Then if he required you know, 100% assistance. So that’s like a little thing. But also the, I think the implications, one of the things I think is so exciting about this is that the implications of Brian now actually saying, “I’m allowed to choose to have a shower”, like that’s something that I get to do that that’s been introduced as a, something that’s under my control now because I have some influence over the steps, that’s really exciting. And that’s got to feel really good for Brian and likely is like will apply to other areas of his life as well. You know, like his feeling of autonomy and choice is not just about the shower.

Karen:
Yes. And you know, while we’ve been working, we’re kind of working on that in a number of ways, but I have noticed sometimes interesting things that he gets up in the morning sometimes before me. Sometimes he comes to get me. So when he gets up before me and doesn’t come to get me, that’s actually a win. But you know, I go down and there’s like a beer on the counter and he’s gotten a beer out. And first he was like want me to open it for him. But then a few days later I noticed that he figured out how to open it himself. You know, beer in the morning, maybe not. But just the, it’s just sort of like he can sort of see some of the things slowly developing of, “I can go get a beer, I can open it.”

Karen:
And similar other things for like an orange doesn’t have really strong control over his fingers. But I have noticed that, you know, he always wants me, he always wanted me to peel an orange. And now he’s been peeling his own orange. And in 10 minutes he makes a big mess of it. If there, he might ask me to help, but you know, if he’s down there and he wants an orange, he’s getting it done. And even last week he all of a sudden, he was making a big mess because sometimes orange just don’t feel nice. So he need a bowl. But you know, it just, it just some of those things you can sort of see. I can sort of see the, it’s like, “Oh, I can, I can make this happen.”

Genia:
I just, I just want to pause and sort of circle back just to make it clear. So Brian was peeling an orange something he, like historically has not done himself, was making a mess and then observed that this was an issue and requested a bowl. That’s what happened. And that’s, that’s a new thing for Brian to problem solve that and to make that request. It just wasn’t clear when you were telling the story that he, he was like, “Huh, this is an issue that I need to solve a problem.” And then he figured out how to solve the problem, made the request.

Karen:
And then i said, “Well, you know, go get. Oh you need a bowl. It’s in the cupboard.” But yeah, so all of those kinds of things of, you know, multi-step activities. And I have noticed, you know, Brian often more than one step instruction or carrying something out is, it’s hard for him. But I’ve noticed when it’s in the service of something he wants done, he can manage it better. So he’s decided we have, we have white shoes and black shoes. He’s decided that sometimes he wants the light shoes and sometimes he wants to black shoes.

Karen:
And that’s happened over the last few months. Like, you know, he need the white shoes and I’m like, “Well, I think they might be upstairs. Go find the, like you want them? Great. You can have the white shoes, no problem. I’ll wait for you to get the white shoes”. But so you can kind of see some of this stuff slowly turning on of, you know, I get to say what shoes but all these things, you know, as I was listening to, you know, Erin’s thing talking about the five levels of choices, just the ability to make little choices, you know, snowballs some, sometimes in a, in a slow way, but leads into, “Oh, I get to make a choice here. Oh, I want to make a choice there too.”

Genia:
Yeah. And I think it’s, choice making is something that we, you know, most people do all the time. But for somebody, for many, many people that have a disability and who have received a lot of support and who require a lot of support and not a lot of opportunity over time to make choices, they, I think part of what you’re alluding to is that people may not even understand that choice is a thing. Right. And then the more, like when they get, when people get opportunities to make choices, then all of the, then that does tend to snowball and expand to other areas of your life. And then the skills that are required in order to make choices and then follow them through like figuring out where the white shoes and what do I have to do to get them and all of the tasks that go along with that means that in pursuit of whatever one is choosing one then also has to develop a whole bunch of other skills and exercise their autonomy in order to bring that choice to fruition, which is a pretty, pretty important aspect of adult life for sure.

Karen:
Yeah, that’s one thing I think we, you know, weren’t really doing well enough and I think probably a lot of parents of people who need substantial help do as well is that because Brian needs a lot of help in managing his life, there are areas where we were deciding things for him. And you know, reasonably, you know, so I think, well, you know, could a 26 year old reasonably expected to be able to decide on their own, you know, what they do in this situation. Now, you know, so we had over aired on the, well, while I’m helping you with this thing, we’ll help you with that other things.

Karen:
So we’ll be given examples, but you know, just all kinds of choices about what you, what you do and when you do it. He’s not he’s not, you know, fully capable of making all those decisions, but you know, wherever we can, we’re now a lot more, a lot more focused on, well, sure, you know, you want that thing. Sure. When I said not going to have him have a, you know, all beer diet, I don’t think he’d want that anyway. But you know, like [inaudible] you can set up to the, “Oh, you want bubbly water? Yeah. It’s in the fridge. Go have it. No problem. You want this? Yeah, sure. You know it, it’s yours.” You want to wear those, you know, all those kinds of things really trying to be focusing more on why can’t he pick.

Genia:
Right.

Karen:
And purposely setting up more opportunities to pick.

Genia:
Right. Yeah. That’s great. So do you have thoughts then on actually, sorry, before I ask you that question, can you talk a little bit about how the other kinds of tweaks you’ve made around Brian’s interest and skill on the treadmill and as an athlete and how you are trying to also kind of tweak that and expand his life in that realm?

Karen:
Okay. Yes, sure. So said Brian he’s not interested in sport. He doesn’t quite understand sports, but over the years we’ve got them interested in using the treadmill. He really likes it. He wants to use it big way, sometimes winning more hours than I’d like him to. But that’s a solitary thing he does in our basement. And you know, I go down with him and I, you know, do stuff. He and I interact around it, but it’s, it’s a solitary thing. So we started we joined the YMCA recently and I used to, I used to go there years and years ago. And I’ve started trying to make that into a social experience. No, not in the, you know, he’s not chatting up the other people, but it’s an experience where he uses the treadmill and he sees other people using the treadmill, and the people see him using the treadmill. We get a chance to acknowledge the staff there. We go through routine of, you know, like you get changed, you have to gather your stuff. We are working towards using weights. It’s going to take a while, but you know, we’ll walk around and we’re talking about various people who are doing various things and look how strong that person is and look how healthy that they’re going to be.

Karen:
I’m hoping to work up towards getting some selfies with some of these guys because Brian would like to see pictures and you know, that kind of would cement the idea of, well, I’m a guy who exercises and here are these other people who exercise. And so kind of build into some of that because Brian is not a very social person. Like he likes my company but he doesn’t miss it or he doesn’t go out of his way to socialize and it’s hard for the people to understand them. But we’re already, I’m already seeing, like yesterday he was like go to YMCA. So even though he’s got lots of opportunities to use the treadmill, he’s starting to get the idea of, well we go and we have the coffee afterward and we have certain activities. But he’s getting into that. So I’m starting to think about, well how can we make this an experience you can do more of on his own. Part of that is in how we’re acting at, at the, at the gym.

Karen:
So last time there he was an hour on the treadmill and I, and some of the cases he could see, I was doing some weights and he could see where I was, where I was. But I also had one point where I was about 20 minutes. I was sitting somewhere where I could see him and he couldn’t see me. I’m trying to get the idea of, you know, you’re a guy uses the treadmill or the guys don’t have their mom there. But they we’re doing things like right now I swipe his card for him. Something about, well, how can I make it easier for him to swipe his card? So again, it’s not a experience where he just accompanies me somewhere without thinking it through. We’ll have to have getting about, “Well, when I go to the gym, I have a card. I could use my card to get in.” Like I make him carry his own bag now. It’s a bit of a, bit of production, but again, you go to the gym, you’re a guy, you get your stuff, you carry your own bag. We’re changing how we pack the bag so he can more easily see you know, he’s got a little Superman bag that goes inside the bag. So that’s where his gym shorts go.

Karen:
So all those things are around making it easier to be a bigger part of the experience. You’re not just, I take you there, you go on the treadmill, you leave. And I think you know, just judging from the fact that he’s now starting to say he wants to go to the YMCA that it is having, you know, it’s helping expand his world in the, in his, you know, in ways. So those are some other things I started really starting to think through. So in the past I might’ve just been, “Well, we’ve got a treadmill. That’s good enough.” I started to think about, “Well, okay. What are the other parts of the experience of being, of being a guy who can go like him, go like hell on the treadmill. Well, when is he going to wreck place as an athlete? And get some of the things around that and you get to go for coffee afterward at the coffee shop next door.

Genia:
That’s right. Yup. And connect with other athletes over time as you develop those relationships. Yeah. And it’s coming in, let me think about this. Coming, so in February Darcy Elks is going to be teaching about roles. And that I think, I think you’ll, you’ll find that really practically helpful around thinking around Brian’s role as a YMCA member and his role as an athlete. And then in March, Al Condeluci is going to be talking and teaching again about social capital. And hopefully that presentation is going to be kind of with a how focus, you know what I mean? Like what do you actually do to make that happen? You know, to build that up. And then in April, hopefully all this is going to, all these seats are going to work out perfectly. But Tom Doody is going to be giving a live presentation on extending invitations.

Karen:
And sort of like in that moment where you’re standing at the Y and there’s the person who smiled at you a few times, but there’s never been any other, you know, interaction. And it’s that moment where you have to reach out and say something in order to next level up that kind of connection and access the gatekeeper to build the social capital. You know, how do you do that? So I’m really excited. I imagine that you know, Brian’s experiences over the last little while. I think in a year it’s going to be really fun to look at what Brian’s life is like in his you know, experiences at the Y and his role of athlete. It’s going to be really fun to look at that and see how far he’s come from, let’s say one or two years ago and the unexpected pieces of that. You know, because of course we can’t predict what that’s going to be. You know, we can’t, we can’t know what that’s going to be, but I think it’s, I’m excited to, I’m excited to be a year or two from now and looking at that.

Karen:
Yeah, I am too. And I’ve been encouraged that, you know, once I started thinking about some of the steps there, each incremental thing is pretty small. But over time it can have a big impact. Well, another thing, I don’t know if we have time for this, but for example, one of the ways I was starting to change my thinking. So one of the ways I was thinking was, you know, eventually, you know, Brian doesn’t go out on his own now. I was thinking, well maybe in the future he might live in somewhere. If there was a coffee shop, like next door, he could work up to him being, you know, trusted and able to just go next door.

Karen:
So right now we go for haircuts and I started out with, you know, I take him to my hairdresser and I kind of sit there and make sure that he’s interacting well. But I started to think about, well, you know, maybe I should be backing off here. And then I started thinking about like, is there any reason I couldn’t leave and go get a haircut or go get a coffee or something like that. Why don’t I start with backing off with, you know, your guy getting a haircut. You guys figure it out to, you know. Is anything bad really going to happen? Like, it’s not like the hairdressers abduct him.

Genia:
Right.

Karen:
But you know, those kinds of things. I started thinking about like, why can’t I do more of this, or eventually haven’t done this yet, but you know, when we go to a friendly coffee shop, you know, maybe I could walk away for 10 minutes and just kind of get those sort of experiences of being someone who’s not being supervised by his mom. Even though, you know, right now, we, yeah, I mean, I, you know, he does need a fair amount of help, but maybe, you know, maybe he’s getting more help than he needs, so we’ve got to keep pushing the boundaries on that.

Genia:
Right. Yeah. Yeah. It’s, and it’s, it’s funny as you’re talking about it, I’m, on the one hand, I’m sort of enthusiastically agreeing. And then on the other hand, I’m so sensitive to how scary that is. And it’s really scary and intimidating. And there’s pieces where there’s sometimes where I think I’m just, I’m just overly involved because it’s a habit and, and it’s a mindless habit. So it’s not that I’m scared. It’s not any of those things. It’s just I’m just overly, I’m have a habit of doing some things that probably don’t need to be done for my son. But then there’s the pieces where we get really scared. And that’s I think where some of the, that’s where, that’s where the building of relationships and connection within community gets really, really critical.

Genia:
Because, you know, let’s say you and Brian go to a coffee shop and you know, the first stage is that Brian goes up in orders for the two of you. And has a tap card or exact change or something like that. And then maybe eventually because he’s doing that, he gets builds up an acquaintanceship sufficiently with the barista that it’s reasonable for you to walk away, you know and out of the coffee shop, but it’s going to probably be the relationship with the barista or whomever, right? Another patron or whatever that is going to be that bridge to feeling like that’s an okay thing to do. Although I guess there’s some situations where we just really have to accept that the risk is okay for our kids to go off and do things on their own, even when there isn’t.

Karen:
Well, I found it with my, I started taking to my hairdresser in the last six months. Like, and you know, I found that initially when I started, I asked him like, “Are you okay on my son’s autistic? Are you okay with cutting his hair?” And he was like, pretty unsure. And then I noticed after a time or two it was like, “Oh, this is fine.” But you know, it was that relationship. Like I think now, you know, he’s more comfortable, know we’re dealing with, and that’s setting up the stage for, you know, what more can we do? But you know doing it on somebody who hasn’t had a chance to go, yeah, I have a relationship and I know what this is about and yeah, this is, this works. I think working to build up the, that kind of a social capital is pretty important.

Karen:
I’ve been pretty disappointed that the closest coffee shop at the top of our street is open hours that don’t really work for us because it would be perfect to expand more on that. It’s like a hundred yards away. And you know, like some of those kinds of situations, I’ve been very much more attuned to, okay, where are places that it’s going to be easier for us to bring to be really known and then to jump off a little bit on some of those situations where you can set it up for, you know, for him to think is okay. And for everybody else I think is okay too.

Genia:
That’s right. Yeah. Yeah. Well, Karen, you’re well on your way. Is there anything else that you want to add?

Karen:
Well, maybe just, so one thing that I found a bit challenging is in some I’ve been, you know, working hard at encouraging Brian to make more choices and to be more assertive. And I have found at least getting a little bit of reaction about you know, are you just doing what he wants you to do all the time. And you know, I’m not doing that all the time, but I have been definitely trying to err on the side of, “You want to do this thing? Yeah, we can do that thing.” And have fewer of the, I’m trying to create a well-developed child here. Therefore you have to learn there are rules and blah, blah, blah, blah, blah.” And you know, so sometimes it feels, it feels a little bit going against the grain, especially with some people who are thinking a little bit more about your adult as a child.

Karen:
Especially since, you know, at the skill, you know, the average skill level. Yeah. They’re a little bit more like a child. But they’re not a child.

Genia:
But their not a child. Yeah.

Karen:
And so things you do to keep your three year old in line is not the same things that are appropriate for your adult. So some of those things are challenging too because you know, the reaction a bit is, you know, a bit, a bit like you’d get if you were catering to your three-year-olds every whim. And I find that, you know, catering to whims versus let’s set you up too so you can really get the idea of you can make things happen in your world by telling me what you want is a bit of a line to walk.

Genia:
Yeah, I think it’s an important point and it speaks, it speaks to so many, so many issues that we can’t cover in this conversation. But I think it’s relevant and important to acknowledge that when you start trying to help your son or daughter to lead a typical life that people will probably object whether they’re, whether they are three or whether they’re 30. You know, that when we go against the grain of what is a, what is a deeply held a deeply held belief about what’s appropriate in how we treat or support people with intellectual disabilities, we’re going to get kicked back. And it’s, you know, it’s hard to, I think for people because a lot of this stuff is so ingrained. And we were taught that people, we’re taught that people kids are manipulative and we’re taught that people with intellectual disabilities are manipulative and childish and all of those things. So it’s a really common objection. Thanks for raising it. I think it’s important.

Karen:
Okay.

Genia:
All right, well thank you very much Karen. I’m really, really grateful. This is the first time that we’ve done parent story, parent highlights, membership or member highlight. I would love to keep doing this. If people who are listening feel like they have a story to tell about how they are applying some of the concepts that we talk about in order to support their son or daughter with an intellectual disability to access the good things in life, I would love to hear from you. And some of these extra episodes and story episodes will be published on the podcast as a bonus episode, which means I’m not going to email you if you are on the email list. The only way of finding out about them when they are released is if you subscribe to the podcast. So please subscribe to the podcast on whatever app you use to listen. There is a button in the show notes to give you a hand with that. Thank you very much everybody for listening and have a great week. Thanks.

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Special thanks to Karen Hunt for joining me this week. Until next time!

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