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Kate is a mother from Iowa whose children have autism, anxiety, ADHD, sensory processing disorder and prosopagnosia. In this episode, she discusses what it was like when her son was first diagnosed, adjusting each year to new teachers, and what it is like to go through the ups and downs of parenting children who are ‘differently wired’.
Welcome to the Mothers on the
Frontline Podcast, episode 28. Mothers on the Frontline is a nonprofit
organization, founded and run by mothers of children with mental illness to
promote caregiver healing and children’s mental health justice through
storytelling. Our vision is a world in which mental health is destigmatized,
respected, and prioritized as an integral part of the overall health of
individuals, families, and communities. In this episode, we hear from Kate, a
mother from Iowa whose children have autism, anxiety, ADHD, sensory processing
disorder and prosopagnosia.
Tammy: So hello, tell us a little
bit about yourself before or outside of mothering, who are you, what do you
love, what do you love to do?
Kate: I love yoga. I’m a very
fanatic yogi and what has happened with my son has really put me in touch with
yoga and with mindfulness so I really like to do that. I like to walk, I like
to do gardening and I just, overall, I’m a very positive person, and I like to
just have fun.
Tammy: Well that’s wonderful, it’s
wonderful. So I want you to pretend you’re talking to parents. What do you
want them to know about your experiences? What can you share that may be helpful
for them to know?
Kate: So in 2014, my son was
officially diagnosed with ADHD, oppositional defiant disorder ODD and
anxiety, and we have been going through a struggle which started actually with
him in preschool. Where we had seen some of the signs but we weren’t quite
sure. He also has allergies, and because of that, he had to be on steroids
sometimes. So it was very hard to figure out what is normal two to three-year-old
behavior, what is induced by being on steroids and what is behavior that is
cause for concern. And at that time too when I would be talking to my
parents-in-law, often they would say like, well, you know your husband was
just the same when he was little. But then after a while, we were really
starting to struggle. It was hard for us sometimes to enjoy weekends. Where
you’re looking forward to Monday because it’s so draining, emotionally draining
to be around your little guy. And there comes a huge guilt complex with that
because you feel like it’s your fault, you’re not doing something right. And
after a while, my husband and I, we were just like, we need help. And at the
time he was in daycare which also had a preschool tied to it. They were very
open to working with us, so we, they said like, we’ll have somebody from Grant
Wood AEA come in, evaluate, and then we’ll just see what happens. We did that.
There was some cause for concern and then we also, on our own reached out to
psychologist and start working with her. And then in 2014, by the year
before he went to kindergarten, he got officially diagnosed. So which was for
us, a lot of things sort of all the puzzle pieces start to come together. And
we were just relieved in a way. But then, on the other hand, it’s like there’s
a huge learning curve. Because now it’s like, I know what it is, but what do I
need to know? So…
Tammy: Right. So, for parents who
are out there who are starting their journey, they haven’t had the diagnosis
yet or ones that have just got it. Like what could you talk about in terms of
barriers that you have faced that had been hard for you to get your child the
help he needs?
Kate: Personally for myself, I think
I was the biggest barrier because sometimes you’re in denial and you think like
oh it’s just the age. It will be okay. This will, well, will resolve itself
down the line but it’s not. So it just, once you come to that realization and
also give yourself a break. I think sometimes as parents, we all try to do a
really good job but we’re only humans too but we’re really hard on ourselves. And
a lot with mental illness diagnosis, there’s a lot of shame I think sometimes
connected to it as well.
Kate: So people or parents it holds
them back at that shame but it’s okay to ask for help.
Kate: And I think that sometimes
that was a barrier for myself. Like I’m always being very independent. I’m a
go-getter. I just get things done myself. But there was a point that I reached
that I was like I don’t want to live like this. This is not normal. If I’m
doing something wrong I need help and I need somebody to let me know, how I
need to adjust my parenting style because I want to enjoy the time I spent
together with my little guy.
Tammy: You brought up several things
that are really important. I mean one is it’s really confusing and you don’t
get to have a control. You have a kid, you don’t get to have a scientific
control and say okay what really is causing this. Let’s change some variables.
No, and especially for those of us who, it’s our only or first child. It can even
be, we don’t know what normal is and it’s such a wide range. So it’s hard to
know if this is neurotypical development or it’s something we should pay
attention to. Is it just quirky or is it something that’s problematic that they
need help with. So that’s just hard to know. You also brought up another
element which is the shame, right? And so asking for help and the third thing
is if your child, there’s something going on, we often have to adapt. So it
isn’t that our parenting is wrong, its our parenting is wrong for the child
with this neurology.
Tammy: So there’s no one right way
to parent. It depends on the child’s needs. I love that you brought up all
that. I just wanted to go back. Oh, yes, I think that’s a really important for
us trying to go through it. It gets all mingled up. So I love that.
Kate: And then there was what I had
to like I was going by how I was raised by my mom and dad, and I think they did
a superb job, but I was a very easy kid. I will always, I listened, I didn’t
fuss a lot and I was also raised and I think a lot of people of our generation
are raised like that. If mom and dad ask you something, you do it and that was
the hardest for me. Like why is my kid not listening to me? And because of his
ODD diagnosis, he’s not as much defiant towards the dad but it’s more towards
me. Which is weird too because they always say like they will be less defiant
to the authoritative person in the relationship but that’s actually me [laughs]
who’s the one that [inaudible]. He’s like yeah if go to mommy and asked her
that, I’m not going to get away with that. I’ll just go to dad. [laughs]
Tammy: [laughs] You know but
that’s another thing. Just like all kids and all human beings they are
different with different people and it can be really, it can hurt our feelings.
Like it can be really hard when we’re the ones seeing the symptoms, right? And
so that can be really hard and often it could be because we’re the parent they
feel safe with or the person they feel safe with in terms of they know they’re
not going to not love me if I act up. As opposed to like a stranger, a teacher
or something like that. They might hold it in more or something. Yeah. No. It’s
really hard. So, same thing. Thinking about parents out there, what has worked
really well in getting help for your child? What had been some successes or
things you’re like, thank goodness that that happened or is available or–?
Kate: The number one thing for me
was first, I had to change myself before I was able to help my son. I had to
let go of control. I had to let go of worrying and that goes often with control
because you want to know, oh, what’s going to happen then? Well, how is this
journey going to be? Is it always going to be like this? And after a while, I
just let go of all of that. I’d lived day by day. I take one day at a time. If
we sometimes have a bad day, I always say, tomorrow is another day and we start
with a clean slate. And I tell my son that as well. For myself too, I let go of
emotions because I had such an emotional kid, and he still is but we’ve really
worked hard with him on helping gauge his emotions better or that he’s just
more aware of them and then he will be able to stop himself. And I think
sometimes maturity helps with it as well. But at the time when we were
struggling, I would always get like asking put your shoes on. It was like World
War III. And it’s the battle you engage and you get worked up and you get upset
and you start yelling, which I hate to do or you hear yourself the whole time
just saying no, no, you can’t do this because he’s like all over the place.
That for me was just letting go of that control and just being aware of that.
Like I’m not going to go invest my emotions in that. I’m going to be very
patient. I’m just going to take a step back and stay calm. And that has really
helped like it’s not always successful.
Tammy: It’s not easy.
Kate: Sometimes I have to dig
really, really, really deep or I’m thinking like, oh, I really want to do this
or this and this right now but no, I don’t look good in orange so I’m not going
to do that. But then again, that helps me just sometimes to get through it
because the sense of humor. Just being aware of like this is a very tough
situation and I’m just trying to do my best. And sometimes I can’t do that and
I walk away. And I give myself that break then I’m just like I can’t handle
this. I just walk away and it’s okay.
Tammy: It’s not only okay it’s
great modeling for your son.
Kate: I try to. Yeah.
Tammy: And it’s really important for
you and me and all mothers and caregivers. It’s wonderful that you’re doing
that. But it’s hard.
Kate: It is hard. It is extremely
hard and sometimes you feel like I am on top of the world, I got this down, I
like my new parenting style, I become calmer, more patient, I don’t let my
emotions get a hold of me that much anymore and other days you’re just like oh,
I suck at this.
Tammy: Right now, it sounds like
you’re talking about when it was really rough, but even when things are going
well, we recognize, they change from moment to moment and so we like to ask
right now, do you feel like you’re swimming, drowning, treading water, where
are you at right now?
Kate: I feel like I’m swimming but I
also know due to his ADHD and his ODD, especially at the beginning of the
school year can be quite challenging. He knows the principal, he knows his
special ed. teacher but it’s always like he has a new teacher. So he tries to
kind of figure out like what can I get away with and this is where the
behavioral issues like the defiance will come in. He doesn’t want to do his
math which he’s really good at but he has a love-hate relationship with it. And
he’s just trying to testing the waters so I know maybe by next week, the week
after that, we’re going to hit that wall where they’re going to say well, he
did this today and he did that today and then after a while, by October,
November, he’ll be like, no, the teacher, she sticks to her guns. I can’t
manipulate her. I’ll just comply. I’ll just do my math. I’m good but I always
am aware of that. Like last year, we hit a wall again to where his medication
that he was on for his anxiety was not working anymore. So we really saw,
because he was older, so we had to switch medications.
Tammy: Which happens a lot when kids
Kate: Yes, exactly because the
current dose like what he was on was no longer working and we just saw certain
behaviors reappear again that we were like, oh, we thought we were done with
this. But then we were aware of that and then we informed the school about it.
We said we’re going to go to the psychiatrist. We’re going to explain this and
probably we’ll switch medications, which happened but then most of his
medications, it takes about at least four to six weeks so we communicate that
to the school. Then it was like “hang in there, we know it’s rough. We’re with
you because what you’re experiencing in school, we’re experiencing at home,”
but then the medication started to work and he’s been doing great. So I know
down the line, we will always hit rough patches but I’m aware of that. It’s
almost like an expectation that I know like, yeah, we’ll go there.
Tammy: Let’s talk about that a
minute because I think that’s really important. It seems to me a common
thing, I know in my own experience when I talk to other mothers and other
caregivers. The first time is devastating, when you first have symptoms erupt
and then things happen – maybe a
therapy, maybe a medication, things seem to do a little better and then things
happen again and that seems to me the most devastating because you first
thought we’ve knocked this like we have this imagination–
Kate: We got this down.
Tammy: — we solved it.
Kate: Yeah. We solved it. [laughs]
Tammy: Like it’s cured. No. And so
but then there’s a kind of confidence that comes with going through a few
cycles knowing you can do this. You got it. It’s hard but you got through in
the past. You’ll get through again. Take it a day at a time. That’s how you do
it so I think that’s a really important thing for people to hear who are just
having the first time or what I think is even harder is that second time things
start to get rough. To know it will ebb and flow and you’re okay, you’re gonna
Kate: Yeah. Exactly. And it was how
you described it. That’s exactly how it is because I think even if you get a
diagnosis in a way you have the expectations. You’re like I know it’s really
rough right now but later on, they will be okay and all of this is just
magically going to go away. No, it’s not. It’s just going to be a day they
become older. A lot of again, maturity helps a lot with some of the
disabilities that my son has – but my
husband actually got diagnosed a year afterwards because he said, well, I’ve
been having a lot of these struggles that I see in our little guy now. And a
lot of the behaviors I was like that when I was little. So I think I’m going to
get myself tested as well. So he has ADHD as well but it was a good thing. It
was kind of knowing like and for him especially, going on medication, that
helps so much.
Tammy: And this is another common
thing. It happens for a lot of parents because there’s a lot of genetic passing
down many of these conditions and our generation and generations before us
didn’t have the knowledge and the outreach on this issues so I know many people
who are getting diagnosed after their kids are do. It can help everybody so
much. So that’s really wonderful that happened.
Kate: For us, it’s been a real, a
real positive like you go through that, you sat on that journey and then you
were like a lot of things and especially for my husband, a lot of things
started to make sense in his world as well then. And then some of it was a
little bit grief knowing that I remember when he went the first day on his
medication, by noon, he said like I’ll never forget it. “Wow, is this what it
feels like to be normal?” And then the second thing that he said was, ”I wish I
would have had this medication when I was in college.” And that to me just
showed how much of a struggle it can be and that explains also the stigma that
is still on mental disabilities because often people, they will look at a
person, they’re like, well, I don’t see anything wrong with them.
Tammy: Invisible disabilities are
Kate: It’s really tough and then
there’s the behavioral issues and then kids start to act out but then if you
don’t understand the disability like people are well, why are they doing this
wrong? It’s okay. It’s normal because I always say, there’s a lady that actually
wrote a book this year which I’m a big fan of and I would strongly recommend to
parents, especially to moms to read it. It’s
Differently Wired: Raising An Exceptional Child in a Conventional World.
It’s by Deborah Reber. And she calls her kid ‘differently wired’.
Tammy: I like that.
Kate: And I call my kid ‘differently
wired’ too or an ‘atypical kid’. It’s like they’re just a little bit
differently wired. Their brains make a little bit, there’s different
connections in there but overall, they’re still good kids. They’re fun kids.
Because I think sometimes there are so much attention is being given to their
negative behaviors and these kids so much need to positive reinforcement. They
need it so much more than your regular wired kid.
Tammy: Absolutely. Absolutely. And I
think that’s true and also sometimes, the differently wired comes with benefits
that we don’t talk about enough too. I think that’s one the things as well. So
we’ve been talking a lot about your journey with your child but what is your
self-care routine or if more appropriate ‘survival technique’? I know you
mentioned yoga and mindfulness which are so key I’m sure. So do you want to
talk a little bit more about that? How does that help you or are there things
you do to sort of take care of you?
Kate: Sometimes it’s easier than
other times. I feel sometimes when things are going really good, you’re very
motivated to go to yoga class and being mindful, but I know there’s one year
more like in the survival awareness or survival mode. It’s like I’m tired. I
don’t want to go do this. No, I don’t feel happy right now. I don’t want to go
to a yoga class – but for me, if I’m
aware of it and I can have that conversation with myself then I push myself to
yes, you got to leave everything right now because you talking to yourself or
having this little mind games going on, that means you need to get your butt to
yoga and go relax for an hour and then usually, by the end of that class, I’m
like, oh, I so needed this. [laughs]
Tammy: I’m me again. [laughs]
Kate: And for me also, I have great
friends. They understand. They’re part of my gang. They don’t judge and
sometimes when I’m struggling because at sometimes you don’t want to
necessarily talk to your husband because their going through the same thing.
You’re talking about it but you always need that perspective. You always need
to talk to other people that have gone through the same experiences or
understand and that really helps like when I’m sometimes struggling and I’m
like, oh, what am I doing wrong? Or not just that. You just hit a rough spot
again. I just I’m like okay, we’re going to have breakfast. Get together with
my friends and then after a two-hour talk, I’m like, I got this.
Tammy: That’s a really good point
because as you said it changes and I know with my own sisterhood of friends,
right? We’ve been lucky that we’re not all crashing at the exact same moment
somehow. I don’t know how that works out. It’s only happened once where we’re
all like oh, no, what do we do? We’re all drowning right now but so you’re
right. Because if you’re talking to someone like a spouse, a partner, even a
mother or father, if they’re helping you take care of your children, if they’re
involved with it and they’re going through the same thing at the same moment,
they’re going through it too. So having that outside group that understands is
so helpful to have that support and I think that’s right. So we like to end
with this question. And we feel like anyone raising kids, this has nothing to
do with neurotypical or not. There are some funny things those kids have done
or that have happened in our lives that make us smile. So we like to ask, what
is your most laughable moment when you think about your experience with your
son? Anything that makes you smile or–?
Kate: He just makes me, he’s got a
great sense of humor. I’m always so surprised because sometimes you get so much
negative feedback what goes on in school and the school he goes to, they’re
really great about also they celebrate the good things and we tell them to
please don’t only you tell us when things are going wrong. We need to hear it
when he is doing great because at school, they make a big deal about it and we
make a big deal about it at home too. And usually, it’s a sense of humor. He will
say this, I can’t quite recall thing but he’s just funny. There’s one thing,
yeah. When he was little, I have a friend and she’s called Mary and she would
come and babysit him at times just when we wanted to go get a break or, and she
was very understanding. She was unjudging or anything and he knew how to handle
him. And then one time, I was like yeah, Mary is coming a later on and he’s
like Mary? He’s like, my Mary? And
I’m like, yeah, and he looked at me very seriously and he’s like well, you need
to get your own Mary.
Tammy: [laughs] I love it.
Kate: And I’m like, okay.
Tammy: No sharing Mary. [laughs]
Tammy: That’s great. Well, I really want
to thank you for taking the time to talk to us and share your story and really
appreciate hearing about it and how you and your family are doing. So thank
Kate: Thank you for giving me the
Thank you for listening to the
Mothers on the Frontline Podcast, copyrighted in 2019. Today’s podcast host was
Tammy Nyden. The music is “Olde English”, written and performed by Flame Emoji.
For more podcasts related to children’s mental health go to MothersOnTheFrontline.com
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Definitions of terms or acronyms used in this interview:
AEA – Area Education Agency – A regional education
service agency created by Iowa Code to provide education services to public school
districts and nonpublic schools within the AEA’s geographic boundaries. They provide many services, including
special educations support.
Book recommendation in this interview:
It’s Differently Wired: Raising An Exceptional Child in a
by Deborah Reber.