Lilian & Michael

Lilian and Michael
Age at interview
55
Age at start of caregiving activities
37

Lillian and Michael are married and in their mid-50s with two children. Their younger son, Oliver, has several disabilities and has just turned 18 years old. Lillian and Michael both work full-time: Lillian as a consultant who travels frequently, and Michael as a professor at a university. They are worried about their son’s future and care arrangements as he transitions into adulthood. Oliver was born with severe problems (hemiparesis, seizure disorder, cerebral palsy, visual impairment) due to a lack of oxygen in utero. He lives at home with them and requires 24/7 care. They have established a variety of care arrangements for their son via volunteer and paid help, beyond the daytime public educational and social programs available for children with disabilities. These programs will no longer be available to them now that Oliver is considered an adult. 

Oliver was born with multiple, severe disabilities and spent the first several weeks of his life in hospital. At times, Lillian and Michael were not sure if he would survive, and they were upset that many of the decisions regarding his care in the perinatal hospital were made without their involvement. His early years were characterized by many seizures, which were difficult for his parents to cope with at home, and he went through several different types of treatments. As a young adult, Oliver can walk but is unstable and falls frequently; he does not speak but makes sounds and some gestures to communicate; he has a serious visual impairment; and, has limited cognitive ability – yet, medically, he is relatively stable, and trips to the hospital and doctors are increasingly infrequent. The most challenging aspects for Lillian and Michael have been the lack of emotional connectedness or reciprocity with their son, the never-ending arrangements to be made for caregiving outside of his current day school (they host ‘staff parties’ once a week for everyone involved in Oliver’s care, a team of about 15 students and young people), balancing busy work and home lives, and concerns about what will happen now that he has turned 18. They describe the transition planning to date as ‘grotesque’.

Lillian and Michael have been profoundly and positively affected by their life with Oliver. They are grateful for the gifts he has provided: an appreciation of an inclusive society that values people with all ranges of abilities, the vast network of friends and caregivers that have become ‘family’, and their own personal transformation thanks to caring for their son. Despite the challenges and day-to-day problems to overcome, they feel their personal, family and professional lives have been enriched by this experience.

Videoclips

Click on the videoclip title for a full page view. Click on the transcript button to open or close the transcript section.

View transcript

Well, I think that’s a really good point about “don’t place expectations on them.” But also the converse of that or the other side of that coin is “don’t expect that they don’t want to or don’t love” either. So, don’t just expect that because your child is disabled that nobody wants—your family members don’t want to be. But at the same time, I think it is challenging because everybody has a different ability to deal with disability. I know when I first went to the school even and Ollie was still very young—and again as I was mentioning earlier about those trajectories, like he was sort of looking more normal than some of the older kids at the school who would be screaming, or making loud noises, or moving. And I always… it’s a little bit jolting when you’re in an environment where you’ve got all these, all this difference. And now I’m so totally used to it, and so I kind of just assume that other people can find that as easy to deal with as I do. And I think that… so don’t put your expectations on other people, on your family members. But at the same time, don’t shy away from having a true family relationship because you just have to work at it a little bit differently.

I just want to come back to one thing so I can be specific about it […] about this notion of the family members. So, don’t place expectations on people, but at the same time, don’t under-estimate what their capacity is because one of the things that I think people have a tendency to do—I know I do— is “You couldn’t possibly do it.” Like, “It’s a lot more work than you think.”And you have to kind…again partly being risk averse. “Oh, I can’t imagine that person looking… ” Just release yourself. It’s like, again, these caregivers that we’ve had. These are not people who are professionals in…they’ve not been trained. […] They don’t even know how to change a diaper. One of the young people we have working with us now, a delightful young man, is studying business at the college. And I said “Ever changed a diaper?”

View transcript

Well, I think that’s a really good point about “don’t place expectations on them.” But also the converse of that or the other side of that coin is “don’t expect that they don’t want to or don’t love” either. So, don’t just expect that because your child is disabled that nobody wants—your family members don’t want to be. But at the same time, I think it is challenging because everybody has a different ability to deal with disability. I know when I first went to the school even and Ollie was still very young—and again as I was mentioning earlier about those trajectories, like he was sort of looking more normal than some of the older kids at the school who would be screaming, or making loud noises, or moving. And I always… it’s a little bit jolting when you’re in an environment where you’ve got all these, all this difference. And now I’m so totally used to it, and so I kind of just assume that other people can find that as easy to deal with as I do. And I think that… so don’t put your expectations on other people, on your family members. But at the same time, don’t shy away from having a true family relationship because you just have to work at it a little bit differently.

I just want to come back to one thing so I can be specific about it […] about this notion of the family members. So, don’t place expectations on people, but at the same time, don’t under-estimate what their capacity is because one of the things that I think people have a tendency to do—I know I do— is “You couldn’t possibly do it.” Like, “It’s a lot more work than you think.”And you have to kind…again partly being risk averse. “Oh, I can’t imagine that person looking… ” Just release yourself. It’s like, again, these caregivers that we’ve had. These are not people who are professionals in…they’ve not been trained. […] They don’t even know how to change a diaper. One of the young people we have working with us now, a delightful young man, is studying business at the college. And I said “Ever changed a diaper?”

View transcript

Lillian: Yeah I think that’s a really, another really good point. I found that period very trying when he was… and I don’t think people intended that, but it’s something that I would definitely… a message to the healthcare system in general or the care system in general is that be really careful about the kind of message that you are giving people, because there’s a fine line between being supportive and being… what’s the word I want?

Michael: Almost parental or something or…

Lillian: Well yeah, patronizing for sure, but also placing unrealistic expectations on people. We were both working at the time, we’re trying to get on with our lives—as Michael said, we have another child that we’re trying to look after, a young child—and […] the sense was you should just give up your life and devote it to this child because this child will benefit if you do that. And if you don’t his future…

Michael: Good parents do that.

Lillian: Yeah exactly, his future is hanging on whether or not you are going to do the right thing here.

View transcript

Lillian: Yeah I think that’s a really, another really good point. I found that period very trying when he was… and I don’t think people intended that, but it’s something that I would definitely… a message to the healthcare system in general or the care system in general is that be really careful about the kind of message that you are giving people, because there’s a fine line between being supportive and being… what’s the word I want?

Michael: Almost parental or something or…

Lillian: Well yeah, patronizing for sure, but also placing unrealistic expectations on people. We were both working at the time, we’re trying to get on with our lives—as Michael said, we have another child that we’re trying to look after, a young child—and […] the sense was you should just give up your life and devote it to this child because this child will benefit if you do that. And if you don’t his future…

Michael: Good parents do that.

Lillian: Yeah exactly, his future is hanging on whether or not you are going to do the right thing here.

View transcript

Michael:  So you asked the question “What would you want to say to policymakers?” I guess another thing that I find really maddening is that, as an adult now, Oliver receives around about $930 a month for disability. That’s for food, shelter, clothing, entertainment and all of his other.

Lillian:     Accommodation.

Michael:  Well, I said shelter, but…

Lillian:     Oh.

Michael:  But, so you think about it. I mean $900 a month. Oliver needs full-time supervision. Now, he likely will get onto some sort of community program through CLBC and so there may be other resources, but this crazy idea that somehow people can live on what they get through disability, that is really, really troubling. And then if you look at the legislation and the rules that are applied, there’s a subtext of it that says “You’re living off the fat of the land, and you’re not going to get a penny more. If you do make a penny more,” because some people with disabilities can make a little bit of money—but as soon as they cross the threshold, it gets clawed back.

The message is somehow like, “You’re well taken care of, and if you’re going to just become fat and lazy,” or something like that, “if we let you make any more because you’re already having such a rich and treasured life…” People should be able to make much more than they can make on these sorts of forms of assistance, because everybody’s already well below the poverty line. I just think that we need to change our culture about that. We have to get out of this idea that people on welfare are all cheating the system; they’re all having a good time at our expense. Those people by and large are struggling, and being on welfare, whether you’re disabled or not, is not a picnic. It’s not fun. it’s not fun being able to not participate in the great parade of life, to not build relationships that happen when you’re involved in work, to not be able to tell other people that this is what I do with my life. There are lots of ways in which people are completely marginalized by being on assistance for whatever reason, and yet we perpetuate this idea that they’re all just having a good time. It’s just so patently false and absurd. And I think what it speaks to is our underlying culture that, somehow, we don’t want anybody to be comfortable, except of course [if] you’ve made it by yourself.

Lillian:     Or no, it’s anybody getting a free ride. It’s this kind of notion.

Michael:  A free ride, yes.

Lillian:     This kind of notion and that’s… it’s just so absurd; you’re right. It’s for anybody who’s on welfare, whether you’re disabled or not. But the vast majority of people on welfare have some sort of disability.

Michael:  Yeah.

Lillian:     But, but like $900 a month is just simply not enough to live. You can’t live. I mean, unless you’re in a rooming house—a room in a large house where there are many other people—and that would be…

Michael:  And you don’t need somebody to care for you full-time, and you don’t need somebody to prepare your meals, and…

Lillian:     To feed you…

Michael:  And dress you, and bathe you, and that stuff…

Lillian:     But it’s not a life, it’s absolutely not a life.

View transcript

Michael:  So you asked the question “What would you want to say to policymakers?” I guess another thing that I find really maddening is that, as an adult now, Oliver receives around about $930 a month for disability. That’s for food, shelter, clothing, entertainment and all of his other.

Lillian:     Accommodation.

Michael:  Well, I said shelter, but…

Lillian:     Oh.

Michael:  But, so you think about it. I mean $900 a month. Oliver needs full-time supervision. Now, he likely will get onto some sort of community program through CLBC and so there may be other resources, but this crazy idea that somehow people can live on what they get through disability, that is really, really troubling. And then if you look at the legislation and the rules that are applied, there’s a subtext of it that says “You’re living off the fat of the land, and you’re not going to get a penny more. If you do make a penny more,” because some people with disabilities can make a little bit of money—but as soon as they cross the threshold, it gets clawed back.

The message is somehow like, “You’re well taken care of, and if you’re going to just become fat and lazy,” or something like that, “if we let you make any more because you’re already having such a rich and treasured life…” People should be able to make much more than they can make on these sorts of forms of assistance, because everybody’s already well below the poverty line. I just think that we need to change our culture about that. We have to get out of this idea that people on welfare are all cheating the system; they’re all having a good time at our expense. Those people by and large are struggling, and being on welfare, whether you’re disabled or not, is not a picnic. It’s not fun. it’s not fun being able to not participate in the great parade of life, to not build relationships that happen when you’re involved in work, to not be able to tell other people that this is what I do with my life. There are lots of ways in which people are completely marginalized by being on assistance for whatever reason, and yet we perpetuate this idea that they’re all just having a good time. It’s just so patently false and absurd. And I think what it speaks to is our underlying culture that, somehow, we don’t want anybody to be comfortable, except of course [if] you’ve made it by yourself.

Lillian:     Or no, it’s anybody getting a free ride. It’s this kind of notion.

Michael:  A free ride, yes.

Lillian:     This kind of notion and that’s… it’s just so absurd; you’re right. It’s for anybody who’s on welfare, whether you’re disabled or not. But the vast majority of people on welfare have some sort of disability.

Michael:  Yeah.

Lillian:     But, but like $900 a month is just simply not enough to live. You can’t live. I mean, unless you’re in a rooming house—a room in a large house where there are many other people—and that would be…

Michael:  And you don’t need somebody to care for you full-time, and you don’t need somebody to prepare your meals, and…

Lillian:     To feed you…

Michael:  And dress you, and bathe you, and that stuff…

Lillian:     But it’s not a life, it’s absolutely not a life.

View transcript

And you talked about the financial impact?

It is really very, very significant and we’ve often talked about, because I think it [is] probably about $40,000 a year after tax dollars. We keep saying wouldn’t it be wonderful if this could be something, if the tax system could try to accommodate this by at least saying “take this stuff off first, and then calculate what your base income is for tax purposes.” And when I say after tax dollars, I mean, that’s a huge amount of money.

And then, when we go on a trip—like we just came back from a week away—well, we need 24/7 coverage for when we’re away, and it’s not as though you can say “Let’s have someone pop in and observe.” You have to have someone to give Oliver his medications, to feed him, to diaper him, to bathe him, to do everything.

If you really want somebody to do the job that you want them to do—to love and care for and nurture and enjoy—you have to pay them something that at least allows them to be in the world. I mean, I’m talking like $17 an hour right. That’s not a lot of money, but after tax dollars for a family, it’s a huge amount of money. And so, I think the issues around this are on both ends of that; partly it’s the level of care that’s required and partly it’s the level of reward that people need so that they can also live in this community. And I’m not talking about buying mansions or you know having a triple digit salary or anything like that. I’m really talking just about getting by as a young person.

View transcript

And you talked about the financial impact?

It is really very, very significant and we’ve often talked about, because I think it [is] probably about $40,000 a year after tax dollars. We keep saying wouldn’t it be wonderful if this could be something, if the tax system could try to accommodate this by at least saying “take this stuff off first, and then calculate what your base income is for tax purposes.” And when I say after tax dollars, I mean, that’s a huge amount of money.

And then, when we go on a trip—like we just came back from a week away—well, we need 24/7 coverage for when we’re away, and it’s not as though you can say “Let’s have someone pop in and observe.” You have to have someone to give Oliver his medications, to feed him, to diaper him, to bathe him, to do everything.

If you really want somebody to do the job that you want them to do—to love and care for and nurture and enjoy—you have to pay them something that at least allows them to be in the world. I mean, I’m talking like $17 an hour right. That’s not a lot of money, but after tax dollars for a family, it’s a huge amount of money. And so, I think the issues around this are on both ends of that; partly it’s the level of care that’s required and partly it’s the level of reward that people need so that they can also live in this community. And I’m not talking about buying mansions or you know having a triple digit salary or anything like that. I’m really talking just about getting by as a young person.

View transcript

Lillian: Here’s one thing that I would love to see though, is that I kind of wish that the system could recognize us when we show up. I mean, he used to be a frequent flyer at the emergency department because he had so many seizures and we were there routine, like at least once a month.
But I finally said, “You know, he’s got an MRSA infection and he’s spreading it around your emergency department. Could you just put us into an isolated unit and take the swab so that we can get out of here, get out of your hair and you can continue doing what you need to do?”
Well, because we’re known to them. And surely…but this is and again, we don’t, we are absolutely, we do not use the healthcare system unless absolutely necessary. If we could look after him and we’ve done lots with the seizures when they have you know stayed within the controlled range—not going, not, not tonic-clonic more than 15 minutes—we will look after him at home. And we know how to manage him, we do all of his medications as I say, we’re perfectly happy to do that; wound changes, dressing changes, all that kind of stuff, we’re perfectly happy to do that. But when he does have to see the system, it would be so nice if they would say, “Oh, okay. We’ll get you through quickly.” Because what happens is there’s just an escalation; he gets agitated, we get agitated, he gets more agitated, we get more agitated and it then becomes this kind of terrible escalation of anxiety and stress because he does not like to be part of the healthcare system. So as we show up at the emerg department, he hates the hospital, he hates it.
So I would love to see, just could there be a little card that says, “Special, here we are. VIP treatment!”

Michael: Of course I’m sure many people would like that.

Lillian: Yeah, I suppose that’s true. It’s just that we are known, it’s a little bit like our Nexus card. Like, we are known to the system; you can do the retinal scan. You know who we are. Look at us okay; it’s us again. We’re hardly ever here, but when we’re here it’s serious, right? You remember that.

Michael: It’s serious, yeah. On that point I think another dimension of it is that as you sit there you meet person #1, who’s the nurse, intake nurse or something. Then the resident will come in, then somebody else will come in, and then eventually a doctor comes in. Well each time, “So, tell us about Oliver.” So now you’re into the sixth telling of the story. It’s the same story you’ve just told, and then you wonder, “Am I missing pieces?” or whatever and you don’t want to be too short with people because they’re trying to attend to your needs. So you don’t want to say, “I just got done.” But for example, if we could have a video to say this is Oliver banging, this is who he is, this is his history and so forth, and we could just say, “Here, watch the video.” Everybody’s got computers and they could just keep it on file. I think not only for our son but for many people in the healthcare system, if we could move to a system where if you have a chronic illness, you tell your story once and then everybody would go to the same story and you don’t have to worry about “did you hear this, did you hear that” and so forth. They could keep it on file. It would be so much better in terms of quality of care.

View transcript

Lillian: Here’s one thing that I would love to see though, is that I kind of wish that the system could recognize us when we show up. I mean, he used to be a frequent flyer at the emergency department because he had so many seizures and we were there routine, like at least once a month.
But I finally said, “You know, he’s got an MRSA infection and he’s spreading it around your emergency department. Could you just put us into an isolated unit and take the swab so that we can get out of here, get out of your hair and you can continue doing what you need to do?”
Well, because we’re known to them. And surely…but this is and again, we don’t, we are absolutely, we do not use the healthcare system unless absolutely necessary. If we could look after him and we’ve done lots with the seizures when they have you know stayed within the controlled range—not going, not, not tonic-clonic more than 15 minutes—we will look after him at home. And we know how to manage him, we do all of his medications as I say, we’re perfectly happy to do that; wound changes, dressing changes, all that kind of stuff, we’re perfectly happy to do that. But when he does have to see the system, it would be so nice if they would say, “Oh, okay. We’ll get you through quickly.” Because what happens is there’s just an escalation; he gets agitated, we get agitated, he gets more agitated, we get more agitated and it then becomes this kind of terrible escalation of anxiety and stress because he does not like to be part of the healthcare system. So as we show up at the emerg department, he hates the hospital, he hates it.
So I would love to see, just could there be a little card that says, “Special, here we are. VIP treatment!”

Michael: Of course I’m sure many people would like that.

Lillian: Yeah, I suppose that’s true. It’s just that we are known, it’s a little bit like our Nexus card. Like, we are known to the system; you can do the retinal scan. You know who we are. Look at us okay; it’s us again. We’re hardly ever here, but when we’re here it’s serious, right? You remember that.

Michael: It’s serious, yeah. On that point I think another dimension of it is that as you sit there you meet person #1, who’s the nurse, intake nurse or something. Then the resident will come in, then somebody else will come in, and then eventually a doctor comes in. Well each time, “So, tell us about Oliver.” So now you’re into the sixth telling of the story. It’s the same story you’ve just told, and then you wonder, “Am I missing pieces?” or whatever and you don’t want to be too short with people because they’re trying to attend to your needs. So you don’t want to say, “I just got done.” But for example, if we could have a video to say this is Oliver banging, this is who he is, this is his history and so forth, and we could just say, “Here, watch the video.” Everybody’s got computers and they could just keep it on file. I think not only for our son but for many people in the healthcare system, if we could move to a system where if you have a chronic illness, you tell your story once and then everybody would go to the same story and you don’t have to worry about “did you hear this, did you hear that” and so forth. They could keep it on file. It would be so much better in terms of quality of care.

View transcript

So another side of this—what is a joy—but professionally it’s completely changed my life. So I’m an academic and for the first 15 years, 14 years of Oliver’s life, there was no way that I was going to confuse my research and interests with disability. Partly because I felt that was self-interest and partly because I felt that I had other things that were really more interesting to me. And over time, that feeling of self-interest has given way to other sensibilities, but also just my own understanding of disability. And I’ve had a chance to start teaching course and perspectives on disability and injury and so forth. And that has been so enriching for me because it’s getting myself out of the mindset of “everybody with a disability is just like our son”. Trying to understand this vast diversity of things that come under this label “disability”, and the consequences that has for the human condition, both positive and negative, has been rewarding, hugely rewarding for me professionally. And it’s gotten me into all kinds of new relationships with different people who work professionally in this sphere of academia. Again, those are relationships that I otherwise wouldn’t have made, but I’m so glad that I’ve made them.

View transcript

So another side of this—what is a joy—but professionally it’s completely changed my life. So I’m an academic and for the first 15 years, 14 years of Oliver’s life, there was no way that I was going to confuse my research and interests with disability. Partly because I felt that was self-interest and partly because I felt that I had other things that were really more interesting to me. And over time, that feeling of self-interest has given way to other sensibilities, but also just my own understanding of disability. And I’ve had a chance to start teaching course and perspectives on disability and injury and so forth. And that has been so enriching for me because it’s getting myself out of the mindset of “everybody with a disability is just like our son”. Trying to understand this vast diversity of things that come under this label “disability”, and the consequences that has for the human condition, both positive and negative, has been rewarding, hugely rewarding for me professionally. And it’s gotten me into all kinds of new relationships with different people who work professionally in this sphere of academia. Again, those are relationships that I otherwise wouldn’t have made, but I’m so glad that I’ve made them.

View transcript

Lillian: But I think having a disabled person in a family network—so what do my siblings or his siblings think about our situation and our son?—because I think when you think about caring for older adults, like when you care about your, when you’re caring for your parents who are aging as caregivers, there is a whole set of factors that emerge, right? So, who becomes the good daughter or the good son who’s looking after the parent and making those sacrifices in terms of that, and how do those play out and how do you balance that between. But this is a different kind of orientation when you have a child that you’re talking about. So, Michael was mentioning about our older son, who initially was really—I mean, when he was very young he was, I think I mentioned, at the birth he was quite visibly concerned, and when he had to come in and sort of look at this infant with all these tubes, he was quite concerned and upset by that. I think it was a bit traumatizing for him. And then he went through a period of being kind of, “Uh yeah, that’s my disabled brother,” like he’s nothing, He’s just kind of like not interested. And…

Michael: Benign indifference in a certain way.

Lillian: Benign indifference, yeah. Not, not, not…. He didn’t want to try and put a blanket over his head. I mean, like siblings do that sort of thing to one another, but he didn’t want to do anything that way to Oliver. But I think he did feel very much like a lot of attention was devoted to his brother. And then when Oliver first started at the special school I was telling you about, they wanted to try a day of integration because integration is sort of where everybody’s at. So, they wanted to try to integrate him into the local school, which happened to be the school that his big brother was at.

View transcript

Lillian: But I think having a disabled person in a family network—so what do my siblings or his siblings think about our situation and our son?—because I think when you think about caring for older adults, like when you care about your, when you’re caring for your parents who are aging as caregivers, there is a whole set of factors that emerge, right? So, who becomes the good daughter or the good son who’s looking after the parent and making those sacrifices in terms of that, and how do those play out and how do you balance that between. But this is a different kind of orientation when you have a child that you’re talking about. So, Michael was mentioning about our older son, who initially was really—I mean, when he was very young he was, I think I mentioned, at the birth he was quite visibly concerned, and when he had to come in and sort of look at this infant with all these tubes, he was quite concerned and upset by that. I think it was a bit traumatizing for him. And then he went through a period of being kind of, “Uh yeah, that’s my disabled brother,” like he’s nothing, He’s just kind of like not interested. And…

Michael: Benign indifference in a certain way.

Lillian: Benign indifference, yeah. Not, not, not…. He didn’t want to try and put a blanket over his head. I mean, like siblings do that sort of thing to one another, but he didn’t want to do anything that way to Oliver. But I think he did feel very much like a lot of attention was devoted to his brother. And then when Oliver first started at the special school I was telling you about, they wanted to try a day of integration because integration is sort of where everybody’s at. So, they wanted to try to integrate him into the local school, which happened to be the school that his big brother was at.

View transcript

Absolutely. The young people that we have met, they are just so wonderful. And we actually have something now; we’ve instituted something called family dinner. So every Wednesday, because our older son and our nephew who lives with us are home—they don’t work, and they’re not at classes on Wednesday night—any of the caregivers who want to come will come for dinner. And we just make the table huge and we just put on a big something or other or whatever it is—each week it’s different—and then we sit around and talk or play a game of some sort; card games or a board game or whatever. And we just so thoroughly enjoyed it, and I think they enjoy coming and we just all kind of… So, it’s not obligatory, it’s just whoever’s around on a Wednesday night and wants to come for dinner. So, it’s just been really neat and staying in touch with these people, it’s just very heartening to get these e-mails and letters from them.

View transcript

Absolutely. The young people that we have met, they are just so wonderful. And we actually have something now; we’ve instituted something called family dinner. So every Wednesday, because our older son and our nephew who lives with us are home—they don’t work, and they’re not at classes on Wednesday night—any of the caregivers who want to come will come for dinner. And we just make the table huge and we just put on a big something or other or whatever it is—each week it’s different—and then we sit around and talk or play a game of some sort; card games or a board game or whatever. And we just so thoroughly enjoyed it, and I think they enjoy coming and we just all kind of… So, it’s not obligatory, it’s just whoever’s around on a Wednesday night and wants to come for dinner. So, it’s just been really neat and staying in touch with these people, it’s just very heartening to get these e-mails and letters from them.

View transcript

And similarly, for us to have a social life it really means inviting people here because it’s easier for us to do that than to try to find care in the evening and all that sort of stuff. But part of the learning is to—so we often will do the meals and so forth, and our friends might say, “Well, why don’t we, why don’t we just bring the meal?” “No, no, no. It’s okay.” Well, now it’s like, “Okay.” So Christmas dinner, friends are bringing a turkey and putting it in the oven early in the day and then coming back and having dinner with us. And I think that that’s an important part of it too. You can still have a life and your friends want to be supportive, and I think we sometimes, I think our friends feel like, “God, stop doing this for us, because every time I come over here, you provide the meal, you do this and you do that.” And so, I think we’re learning to say, “Okay, come on over and bring the meal.” Happy to do that. You want to entertain us? Do it. But entertain us here so that we can meet Ollie’s needs and do those sorts of things. And that’s been pretty cool. So, this holiday we’ve just been on, the friends that we went with, they made almost all the meals. And it was a way for them to take care of us. And learning to step back a bit and just accepting that, is I think a bit of a trick—certainly for folks like us, it’s a bit of a trick.

View transcript

And similarly, for us to have a social life it really means inviting people here because it’s easier for us to do that than to try to find care in the evening and all that sort of stuff. But part of the learning is to—so we often will do the meals and so forth, and our friends might say, “Well, why don’t we, why don’t we just bring the meal?” “No, no, no. It’s okay.” Well, now it’s like, “Okay.” So Christmas dinner, friends are bringing a turkey and putting it in the oven early in the day and then coming back and having dinner with us. And I think that that’s an important part of it too. You can still have a life and your friends want to be supportive, and I think we sometimes, I think our friends feel like, “God, stop doing this for us, because every time I come over here, you provide the meal, you do this and you do that.” And so, I think we’re learning to say, “Okay, come on over and bring the meal.” Happy to do that. You want to entertain us? Do it. But entertain us here so that we can meet Ollie’s needs and do those sorts of things. And that’s been pretty cool. So, this holiday we’ve just been on, the friends that we went with, they made almost all the meals. And it was a way for them to take care of us. And learning to step back a bit and just accepting that, is I think a bit of a trick—certainly for folks like us, it’s a bit of a trick.

View transcript

Well, so one of the things that we do is—we have many smaller and then bigger things, but we certainly—we have a holiday every year. So we’ve now started, this is the 4th year we’ve taken a winter holiday, just one week, and it’s when our son’s at school. So we have, you have to have the supports all in place. It takes a lot of work to get up there because you’ll see there’s all kinds of notices; there’s a schedule of who’s going to work because we have to have 24/7 coverage. So it takes a lot of work, but again, once you’ve got that system in place, then each year—and this is the beauty of computers, I’ve got file folders and you kind of go in okay and then you just have to change the dates and change things around a little bit and update them according to what’s happening—but take the time to put that system in place because once you’ve got it, you can just brush it off and use it every year kind of thing. So we take a holiday, got the systems in place now, go away and, and we’re again, financially we can afford that. But I think there might be other ways that you could do it.  Like for example, if there was a place, somebody had a…you could go and stay in a different town or a different…There are some programs here in town like that, I’ve forgotten what that vacation one is called. Anyway you can have a couple of nights off or whatever. So we do a holiday, a winter holiday every year and we try to do a cultural holiday of about a week to 10 days. Sometimes, again always while our son’s in school because that at least it, the burden of then the care is a little bit less intensive. If we were to go away in the summer, then it would be hard.

View transcript

Well, so one of the things that we do is—we have many smaller and then bigger things, but we certainly—we have a holiday every year. So we’ve now started, this is the 4th year we’ve taken a winter holiday, just one week, and it’s when our son’s at school. So we have, you have to have the supports all in place. It takes a lot of work to get up there because you’ll see there’s all kinds of notices; there’s a schedule of who’s going to work because we have to have 24/7 coverage. So it takes a lot of work, but again, once you’ve got that system in place, then each year—and this is the beauty of computers, I’ve got file folders and you kind of go in okay and then you just have to change the dates and change things around a little bit and update them according to what’s happening—but take the time to put that system in place because once you’ve got it, you can just brush it off and use it every year kind of thing. So we take a holiday, got the systems in place now, go away and, and we’re again, financially we can afford that. But I think there might be other ways that you could do it.  Like for example, if there was a place, somebody had a…you could go and stay in a different town or a different…There are some programs here in town like that, I’ve forgotten what that vacation one is called. Anyway you can have a couple of nights off or whatever. So we do a holiday, a winter holiday every year and we try to do a cultural holiday of about a week to 10 days. Sometimes, again always while our son’s in school because that at least it, the burden of then the care is a little bit less intensive. If we were to go away in the summer, then it would be hard.

View transcript

Lillian: Actually that’s a really important point, being on the same team. That’s really hard when you have somebody who does not speak and who does not communicate well with you. We’ve had a quite a few. This is actually a fairly important point. Dilemmas, one recently about how to manage his head hitting, and Michael was of the view that we should be taking him off his medications because he’d reached adolescence and so he should be able to be off the seizure medications. And my view was he’s well-controlled, there’s no side effects so we should be keeping him on because why… if it ain’t broke, kind of thing. And so, we ended up going with decreasing the medications with a view to eventually getting him off, and he started to head hit a lot more. So this gave rise to me calling the neurologist and saying, and I was quite concerned because this becomes an issue when we’re in the store and he starts hitting himself and there’s blood going everywhere and it’s a grocery store; you don’t want blood flying all over the place.
 

Lillian: So anyway, I called the neurologist and said, “What’s going on?” and talked to the physician assistant, who was just marvellous. And he walked through the whole thing with me and he said the drugs that he’s on, in fact, one of the salutary effects is that they actually control migraines. So, if there’s an underlying migraine, like maybe he’s having migraines and maybe that’s why he’s whacking himself. I didn’t think that was, that theory was going to hold true,  but nonetheless these medications do have a behavioural component to them, which is kind of a positive side effect; they control seizures, but they also can have some sort of behavioural control. So, he suggested stepping them up rather than back. But we went to visit the neurologist and we talked a little bit about it, and she prescribed a new medication specifically for the head hitting. And it became apparent and there were some side effects associated with this, including some irritability—no, I don’t think it was for the [irritability] because it was meant to control irritability—but there was…

Michael:Lethargy, falling asleep.

Lillian: Lethargy. So the first night he was on them, he fell asleep in the bathtub and we had to physically move him to bed. And suffice it to say, he was on the medications for 4 days. The head hitting got way worse; it was just terrible. So now he’s back to the same medications that he’s been, on same level of medications. But here was a situation where you have different opinions about what we should do, what the intervention ought to be, and that becomes really hard because sometimes you just have to, “Okay.” Like, I had to suppress my instinct of what I wanted to do in terms of stepping him down off the medications. I didn’t want to do that. We had a bad experience with stepping him off medications a number of years ago. We had a massive tonic-clonic seizure and ended up in the hospital for…

Michael: But that was after a year and a half of no seizure activity and where he was drug free for the first time in his life.

Lillian: Sure yeah, yeah.

Michael: So it was kind of…

Lillian: Yeah, so it’s just kind like weighing the consequences and the risks, and that kind of thing. And there are different degrees of risk aversion. Like, I happen to be quite risk averse when it comes to that kind of thing. I do not…For me a seizure is something that I do not want to, in any way, precipitate.

View transcript

Lillian: Actually that’s a really important point, being on the same team. That’s really hard when you have somebody who does not speak and who does not communicate well with you. We’ve had a quite a few. This is actually a fairly important point. Dilemmas, one recently about how to manage his head hitting, and Michael was of the view that we should be taking him off his medications because he’d reached adolescence and so he should be able to be off the seizure medications. And my view was he’s well-controlled, there’s no side effects so we should be keeping him on because why… if it ain’t broke, kind of thing. And so, we ended up going with decreasing the medications with a view to eventually getting him off, and he started to head hit a lot more. So this gave rise to me calling the neurologist and saying, and I was quite concerned because this becomes an issue when we’re in the store and he starts hitting himself and there’s blood going everywhere and it’s a grocery store; you don’t want blood flying all over the place.
 

Lillian: So anyway, I called the neurologist and said, “What’s going on?” and talked to the physician assistant, who was just marvellous. And he walked through the whole thing with me and he said the drugs that he’s on, in fact, one of the salutary effects is that they actually control migraines. So, if there’s an underlying migraine, like maybe he’s having migraines and maybe that’s why he’s whacking himself. I didn’t think that was, that theory was going to hold true,  but nonetheless these medications do have a behavioural component to them, which is kind of a positive side effect; they control seizures, but they also can have some sort of behavioural control. So, he suggested stepping them up rather than back. But we went to visit the neurologist and we talked a little bit about it, and she prescribed a new medication specifically for the head hitting. And it became apparent and there were some side effects associated with this, including some irritability—no, I don’t think it was for the [irritability] because it was meant to control irritability—but there was…

Michael:Lethargy, falling asleep.

Lillian: Lethargy. So the first night he was on them, he fell asleep in the bathtub and we had to physically move him to bed. And suffice it to say, he was on the medications for 4 days. The head hitting got way worse; it was just terrible. So now he’s back to the same medications that he’s been, on same level of medications. But here was a situation where you have different opinions about what we should do, what the intervention ought to be, and that becomes really hard because sometimes you just have to, “Okay.” Like, I had to suppress my instinct of what I wanted to do in terms of stepping him down off the medications. I didn’t want to do that. We had a bad experience with stepping him off medications a number of years ago. We had a massive tonic-clonic seizure and ended up in the hospital for…

Michael: But that was after a year and a half of no seizure activity and where he was drug free for the first time in his life.

Lillian: Sure yeah, yeah.

Michael: So it was kind of…

Lillian: Yeah, so it’s just kind like weighing the consequences and the risks, and that kind of thing. And there are different degrees of risk aversion. Like, I happen to be quite risk averse when it comes to that kind of thing. I do not…For me a seizure is something that I do not want to, in any way, precipitate.