DMP Interview
M: How many people are in your family?
L: In my immediate family there are 6. 6… and one dog
M: What do your family dinners looks like; dinners as a family
L: Ummm, cooking is pretty popular in my family, so usually it’s a homemade thing and when we’re all at home,
whoever is at home will usually sit down and eat together though now-a-days there aren’t very many people
at home. But yeah, it’s your typical LDS family sit-down dinner situation.
whoever is at home will usually sit down and eat together though now-a-days there aren’t very many people
at home. But yeah, it’s your typical LDS family sit-down dinner situation.
M: and that’s pretty much all the same when you were growing up as well?
L: Yeah I’d say so
M: Very cool. So what do you envision as the societal, idyllic family?
L: I mean, obviously there’s not just one way to have a perfect family, and none of us have a perfect family
anyway, but if we did there wouldn’t just be one way to do it. Uhh. But the ideal that I’ve generally thought
of for my own family is having, you know, a mom and a dad, some kids, not just one cause that might be
lonely, but also probably not more than 4 because that might be kinda crazy. And hopefully they get along
well together, happy, work out their differences, all that good stuff.
anyway, but if we did there wouldn’t just be one way to do it. Uhh. But the ideal that I’ve generally thought
of for my own family is having, you know, a mom and a dad, some kids, not just one cause that might be
lonely, but also probably not more than 4 because that might be kinda crazy. And hopefully they get along
well together, happy, work out their differences, all that good stuff.
M: And then, is there anything about your family that challenges the ideal?
L: Yeah, yeah, I think I see what you’re saying. I would say that my family differs from the norm in that…
well my dad’s side of the family is pretty non-traditional. For instance, his parents are divorced and he has
a fair few step siblings. One of them died a while ago, after having a son, and there was really no one else
to take care of him so my family ended up adopting him. We got JR when he was just a little, tiny baby and
we’ve really adopted him into the family in every sense of the word, but that does make things a little difficult.
He struggles from fetal alcohol syndrome. His mom drank, and maybe did drugs, while she was pregnant with
him. And also, he is racially completely different from us. We’re a caucasian family pretty much and he seems
to be, well we don’t know exactly what it is, but we’re guessing he’s pacific islander of some sort, Samoan
maybe.
well my dad’s side of the family is pretty non-traditional. For instance, his parents are divorced and he has
a fair few step siblings. One of them died a while ago, after having a son, and there was really no one else
to take care of him so my family ended up adopting him. We got JR when he was just a little, tiny baby and
we’ve really adopted him into the family in every sense of the word, but that does make things a little difficult.
He struggles from fetal alcohol syndrome. His mom drank, and maybe did drugs, while she was pregnant with
him. And also, he is racially completely different from us. We’re a caucasian family pretty much and he seems
to be, well we don’t know exactly what it is, but we’re guessing he’s pacific islander of some sort, Samoan
maybe.
Is just, just, I don’t know, the racial difference has been really interesting having JR in our family. We lived
in California for a time and in California, especially our part of California, there were a whole lot of hispanic
families. People would just naturally assume he was part of a hispanic family, not our family. In fact, I
remember at one point my mom was picking him up from school and they were going to walk home together,
and you know he’s a young kid, he’s crying, whining about something random, probably nothing very important,
but uhm... As they’re walking away crying, this hispanic woman actually approached him and started speaking
spanish to him, trying to figure if something is wrong, you know, if there’s a crazy white woman trying to abduct
him or something, and of course he has no idea what’s going on because he doesn’t speak a lick of spanish. I
don’t know. It’s just kind of funny because within our family he’s just one of us, no one cares about the racial
difference, no one hardly even sees it anymore, except to note he’s an extremely adorable child. When you get
outside the family in situations like that, it’s just funny seeing the lack of understanding that other people
sometimes have.
in California for a time and in California, especially our part of California, there were a whole lot of hispanic
families. People would just naturally assume he was part of a hispanic family, not our family. In fact, I
remember at one point my mom was picking him up from school and they were going to walk home together,
and you know he’s a young kid, he’s crying, whining about something random, probably nothing very important,
but uhm... As they’re walking away crying, this hispanic woman actually approached him and started speaking
spanish to him, trying to figure if something is wrong, you know, if there’s a crazy white woman trying to abduct
him or something, and of course he has no idea what’s going on because he doesn’t speak a lick of spanish. I
don’t know. It’s just kind of funny because within our family he’s just one of us, no one cares about the racial
difference, no one hardly even sees it anymore, except to note he’s an extremely adorable child. When you get
outside the family in situations like that, it’s just funny seeing the lack of understanding that other people
sometimes have.
M: And how does your family find happiness despite/through/because of the differences?
L: Ummm. I mean, I’d say finding happiness has been something of a struggle considering that we picked up
another kid way after my parents were done having children. Not so much because of the race differences that I
was talking about before, but, uhm, I don’t know, I’d say in a large part because of the medical challenges, like JR
having fetal alcohol syndrome gives him some serious behavioral issues that take a lot of patience, I think, from
everyone involved and can sometimes cause problems. Like I know my parents sometimes have a hard time going
out with JR just because he’s so prone to get really easily bored or angry or upset or whatever it may be. Uhm.
But I think that’s kinda gotten us to be more creative about things we do, you know, finding activities everyone can
all enjoy together, making an effort to look at what the other people in our family need. Say when any of the kids who
are at college go home for a while we try and help out, babysit, and stuff like that to give mom and dad a little bit of a
break. Despite his challenges, JR loves being helpful. He loves getting in the kitchen with me, he’s always begging
me to make lava cake with him when I’m home, haha, which is fun. And yeah, I think we’ve just kinda learned to find
things that we can do and enjoy together and live good times to the fullest and bear with the struggles as they come.
another kid way after my parents were done having children. Not so much because of the race differences that I
was talking about before, but, uhm, I don’t know, I’d say in a large part because of the medical challenges, like JR
having fetal alcohol syndrome gives him some serious behavioral issues that take a lot of patience, I think, from
everyone involved and can sometimes cause problems. Like I know my parents sometimes have a hard time going
out with JR just because he’s so prone to get really easily bored or angry or upset or whatever it may be. Uhm.
But I think that’s kinda gotten us to be more creative about things we do, you know, finding activities everyone can
all enjoy together, making an effort to look at what the other people in our family need. Say when any of the kids who
are at college go home for a while we try and help out, babysit, and stuff like that to give mom and dad a little bit of a
break. Despite his challenges, JR loves being helpful. He loves getting in the kitchen with me, he’s always begging
me to make lava cake with him when I’m home, haha, which is fun. And yeah, I think we’ve just kinda learned to find
things that we can do and enjoy together and live good times to the fullest and bear with the struggles as they come.
M: It’s funny because when I was talking to Sasha I had to ask really specific questions to get any kind of story out
of her. I wonder if it’s because we get so used to what our families, and we’ve already gone through the process of
realizing that families are different, or growing up with our families the way they are. It’s hard to say what makes
your family unique because it’s the only family you’ve ever known.
of her. I wonder if it’s because we get so used to what our families, and we’ve already gone through the process of
realizing that families are different, or growing up with our families the way they are. It’s hard to say what makes
your family unique because it’s the only family you’ve ever known.
...
L: Yeah, one of the other challenges my family has faced growing up, as we’ve all grown up together, aside
from my little brother, is that actually pretty much all the kids in our family are in some form or another disabled.
That wasn’t really obvious from the start, except for me, I’ve got SMA and I’m a power wheelchair user, right?
And my parents tried to come up with all the ways to have as normal a life as possible. For instance, when I
was young we didn’t know medically what we know now, and one of the bug things that’s come out in disability
research is the idea that children need to be able to move around to develop properly while they’re young. You
know, they need to be able to crawl, to start walking. And that wasn’t something I was able to do which could’ve
severely limited my development except that my dad, and of course my mom also, were so committed to helping
me have that mobility and that normal life. I’ve actually heard this story from my dad a few times. He likes to talk
about when they were working with doctors and insurance companies when I was a very very small child to get
me a wheelchair. Practically unheard of at the time, I was 2 years old. And my dad says he was on the phone
with the insurance company at the time and they said, “Uhh, sir? We’re really not in the habit of providing power
wheelchairs to two year olds.” and my dad says, he says “Well, I just straightened up and said” (and while he’s
saying this I can see the little smirk he totally would’ve had on his face at the time) “I said to them, ‘well, this is
going to be an exception for you, isn’t it?’” And that’s just kinda the attitude my parents had when I was little until
I was old enough to adopt the perseverance for myself, is the attitude that there was no real reason I can’t live a
normal life in the society we live in and they were going to go out of their way to make that possible. It’s… we’ve
kinda had to develop that idea and carry it further as the rest of the family has gotten older. For instance, my older
brother has aspergers, which is a mild form of autism, and led to him, he’s very, very intelligent and hyperfocusses
on somethings. Like he can work really hard at certain things and just know everything about them because he
loves them so much. But if it’s something he doesn’t care about, he just doesn’t do anything for it. So he took some
really bad grades in high school I think, I’m not sure whether he failed or anything or not, but it’s just that struggle,
again, at having to come at things from a different direction, having to figure out what’s going to work for you and
your family. And I think we’re kinda going through that revolution one more time. Well, with my little brother with
fetal alcohol syndrome, and also with my older sister, which it turns out, we found out relatively recently, she also
has autism, and women tend to mask it much better than men so we weren’t really aware of it until just a few years
ago. And she’s changed in those years. She’s stopped masking as much, she’s started acting the way she feels
and it’s been quite an adjustment. Not so much for me and my brother since we’ve always been more aware than
most of what’s going on inside each other. Just going through that process one more time of figuring out how we
can take these non-ideal things, and make them work for our family so can build all these really strong relationships
that can last us a lifetime, and hopefully after.
from my little brother, is that actually pretty much all the kids in our family are in some form or another disabled.
That wasn’t really obvious from the start, except for me, I’ve got SMA and I’m a power wheelchair user, right?
And my parents tried to come up with all the ways to have as normal a life as possible. For instance, when I
was young we didn’t know medically what we know now, and one of the bug things that’s come out in disability
research is the idea that children need to be able to move around to develop properly while they’re young. You
know, they need to be able to crawl, to start walking. And that wasn’t something I was able to do which could’ve
severely limited my development except that my dad, and of course my mom also, were so committed to helping
me have that mobility and that normal life. I’ve actually heard this story from my dad a few times. He likes to talk
about when they were working with doctors and insurance companies when I was a very very small child to get
me a wheelchair. Practically unheard of at the time, I was 2 years old. And my dad says he was on the phone
with the insurance company at the time and they said, “Uhh, sir? We’re really not in the habit of providing power
wheelchairs to two year olds.” and my dad says, he says “Well, I just straightened up and said” (and while he’s
saying this I can see the little smirk he totally would’ve had on his face at the time) “I said to them, ‘well, this is
going to be an exception for you, isn’t it?’” And that’s just kinda the attitude my parents had when I was little until
I was old enough to adopt the perseverance for myself, is the attitude that there was no real reason I can’t live a
normal life in the society we live in and they were going to go out of their way to make that possible. It’s… we’ve
kinda had to develop that idea and carry it further as the rest of the family has gotten older. For instance, my older
brother has aspergers, which is a mild form of autism, and led to him, he’s very, very intelligent and hyperfocusses
on somethings. Like he can work really hard at certain things and just know everything about them because he
loves them so much. But if it’s something he doesn’t care about, he just doesn’t do anything for it. So he took some
really bad grades in high school I think, I’m not sure whether he failed or anything or not, but it’s just that struggle,
again, at having to come at things from a different direction, having to figure out what’s going to work for you and
your family. And I think we’re kinda going through that revolution one more time. Well, with my little brother with
fetal alcohol syndrome, and also with my older sister, which it turns out, we found out relatively recently, she also
has autism, and women tend to mask it much better than men so we weren’t really aware of it until just a few years
ago. And she’s changed in those years. She’s stopped masking as much, she’s started acting the way she feels
and it’s been quite an adjustment. Not so much for me and my brother since we’ve always been more aware than
most of what’s going on inside each other. Just going through that process one more time of figuring out how we
can take these non-ideal things, and make them work for our family so can build all these really strong relationships
that can last us a lifetime, and hopefully after.
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