Episode 293-Balancing Family Life and Advocacy Efforts with Inclusive Dad Podcast Host Aaron DeVries
October 29, 2024 • 30 mins
Aaron DeVries, a devoted advocate for disability inclusion, brings his heartfelt journey to our conversation, inspired by his daughter's battles with epilepsy and cerebral palsy. As a father navigating a predominantly female advocacy space, Aaron shares the importance of belonging over merely fitting in, urging more fathers to lend their voices to the cause. We explore how personal experiences, including his upbringing, have shaped Aaron's advocacy approach, encouraging others to question societal norms and embrace emotional sensitivity.
Facing the daunting transition from pediatric to adult care, Aaron offers invaluable insights for parents of children with disabilities. We discuss the challenges of managing medical and educational environments that change with age, underscoring the need for proactive advocacy and early planning. Through Aaron's experiences, we learn the importance of balancing family life with therapy demands, and recognizing the human side of medical professionals to ensure the best care for children.
Aaron's Inclusive Dad Podcast becomes a beacon for promoting a more inclusive world through honest conversations and small actions. We delve into the unexpected opportunities that arise from following one's passion, like starting a podcast, and the empowerment it brings to those who share their stories. Wrapping up with a lighthearted weather chat between Minnesota and Utah, we find appreciation for the changing seasons, much like the transformative change in attitudes towards inclusion that Aaron champions.
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Episode Transcript
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Speaker 1 (00:04):
Welcome to the SJ Child Show, where a little bit
of knowledge can turn fear intounderstanding.
Enjoy the show.
Hi, and thanks for joining theSJ Childs show today.
(00:31):
I'm your host, sj Childs, andtoday, oh, I guess we won't be
joining you shortly.
We are here now.
Hello, take the banner down.
We are here with Aaron, and isit DeVries?
Devries.
Devries it's so nice to meetyou and have you here today.
(00:51):
I'm really looking forward tothis conversation.
Tell us a little bit aboutyourself, introduction, and what
brings you here today.
Speaker 2 (00:59):
Yeah, so my name is Aaron DeVries.
I live in Minnesota.
I have all my life.
Today it's pretty nice out.
I got down to 25 earlier thisweek so I'm already feeling some
cold weather here, but I'velived here all my life.
I have two children.
My son is, let's see, 23.
My daughter just turned 22.
(01:20):
Wow, she was diagnosed at threemonths old with epilepsy and
then cerebral palsy after that,so got introduced to the
disability world through mydaughter and then learned about
inclusion later on and beenfighting for her to be included
since that point in time and I'mjust wanting to spread the word
(01:41):
about inclusion.
I've given two TEDx talks oninclusion.
I started my own podcast acouple months ago talking with
people about inclusion.
So I have inclusion tattooed onmy arm, so I'm kind of all in
on inclusion.
Speaker 1 (01:55):
I love it.
I love it.
You're the inclusion dad, justlike the logo says, and so what
a wonderful way to represent andit sometimes is for my story as
well my son fueled our passionsand our desires to help educate
(02:16):
and bring change in our societyfor the purpose of being
included.
You know, I heard on thispodcast the other day somebody
saying the difference betweenbelonging and fitting in, and
when you belong, you don't haveto fit in, you don't have to try
(02:39):
to fit in.
When you belong, you're just apart of it.
When you fit in, then you'remasking, then you're having to
wear the certain clothes oryou're having to speak a certain
way, or I just thought that was.
I hadn't really looked at itthat way and thought what a
wonderful perspective and greatway to teach, especially kids.
(03:00):
You know that you want to findwhere you belong, where you can
be yourself and let your masksdown, and things like that.
How hard was it, as a dad, tofind a sense of community and a
sense of belonging?
Speaker 2 (03:18):
I mean as a dad.
I guess, if I'm being honest, Ihaven't, I mean I don't have a
pretty like a dad communityaround me.
Honestly, it's mostly evenstill a lot of.
Any meeting I go to, it'susually, I mean, if there's
other guys there.
It's kind of surprising to me.
So, like the disability world,at least where I'm at, it's
(03:41):
heavily female, so it's which is.
I mean I'm, I'm comfortable inthat setting.
It's just interesting howheavily female in my experience
it's been.
But as far as I mean, I have asense of community with, you
know, other parents, probablymostly moms, but there are some
dads who I hang out with thatyou know have children with
(04:04):
disabilities or on IEPs, so I doget that community from them as
well.
Speaker 1 (04:10):
Great.
It is tricky, isn't it?
And it can be so isolating, andespecially when every human
goes into having children with,oh we're going to do this and
we're going to do that, and youhave ideas in your head of what
you might do and, um, it's neverlike anyone's fault or, you
(04:33):
know, guilt or anything likethat, but the ideas are still
not being able to move forwardand you have to let those go,
and that can be tricky.
But creating, like your owncommunities and things I mean
that can be really hard too, butit is necessary sometimes when
you find yourself in these typesof things.
(04:55):
So, just like you're doing withyour podcast, I love that idea
and I think it's reallyimportant to have the dad
representation and I hear whatyou're saying how there's so
many you know moms out therebeing the advocates and being
(05:16):
the fighters.
And it's not to say that thedads aren't.
They're just not as vocal oropen about it, and we'd love to
see that.
We'd love to see the idea ofbeing an advocate change.
What do you think is maybe like, what is a drawback that some
(05:38):
of these guys might have, beinga guy yourself, to be able to
say why aren't enough peopledads coming to the tables?
Speaker 2 (05:51):
um, I mean, I don't.
That's a great question, I, andif I think to myself, how did I
, how did I get?
What about me, led me down thisadvocacy path?
I'm not really sure either.
I mean my dad growing up wewent to church, every time the
doors open, and my dad wouldalways.
(06:11):
If the preacher was up theresaying something during a sermon
, my dad that week would go andyou know, look for himself, see
what his view on the Bible wasor what he thought it said, and
then, you know, bring it up.
So I kind of have that rolemodel of you know not just
taking everything at face value,maybe questioning things.
(06:31):
That thing, I'm not sure ifthat, you know, comes into it.
It's just I also get from mymom.
I mean, if she watches aHallmark movie she's crying, and
I have similar, not Hallmarkmovies because I don't watch
them, but if it's somethingwhere it's, you know, more
emotional, I'll tear up.
So maybe just DNA, that kind ofstuff.
(06:59):
For what I was around, where mystrengths lie, which I feel like
in a mom-dad-child relationship, you kind of have to whoever is
best at which piece of the youknow responsibility, maybe have
them be able to do that I'm notsaying that I'm better than my
daughter's mom in the situation.
(07:20):
It's just something that I likedigging into, like spending
time on, and early on in myjourney I realized that I mean
she was having 90 minute grandmal seizures.
So I'm like this I'm not goingto work 60, 80 hours a week,
never be home.
I mean I could.
(07:40):
I don't want to be doing thatSomething happens and I'm not
able to spend time with her andI'm not able to spend time with
her.
So early on I kind of got overthe misconception that I should
be working all the time as a dadand just doing that.
So maybe that helped.
I'm not exactly sure, but Ifeel like maybe it's just the
roles that we still have insociety and dads versus moms.
I guess I haven't come with agood answer, it's just.
(08:05):
I mean it's kind of interestingthough.
Speaker 1 (08:06):
Well, it seems to me like your parents probably
instilled um, a really greatsense of emotional intelligence
in you for one, which gave youthe um I, you know, the ideation
that you could do more for yourchild than other people with
society.
(08:27):
Right, it's just crazy Really.
When you're in the disabilityworld in any way, you very, very
quickly realize that societyisn't a lifestyle that your
family lives by and that allthat goes to the wayside.
I'll tell you, I used to jokethat it was like my house had
(08:49):
round walls instead of corners.
That's how different it was.
Over here, nothing even lookedlike a real house.
I mean, of course it is just aregular house.
But the inside and the peoplethat exist in it, they exist in
their own dimension of the world, not in society's idea of what
it is.
And giving space to that andmaking that environment your
(09:12):
number one intention is soimportant for the development of
that child, of thatrelationship.
I love what you said about beingresponsible and accountable,
kind of, for the role that youprovide, because, yeah, I had
(09:33):
careers.
I could have made great moneyand kept working, but my husband
also had a fine career.
That could be fine.
I wanted to stay home.
I always wanted to be a mom.
We both knew it'd be great, youknow, for for me to do that and
being responsible andaccountable to say, okay, well,
I don't, I'm going to have toforfeit those careers, those
(09:54):
ideas to stay at home and createthis environment.
You go to work.
I trust this.
You know part of your plan, ofyour role, so I think that's
really smart.
Parenting or co-parenting, ifthat's what you're doing, yeah
for sure.
Yeah, I love that.
What are your plans for what?
(10:18):
Do you see that kind of needsto change?
Are there any?
I know that's that's a bigloaded question, but change, are
there any?
Speaker 2 (10:28):
I know that's, that's a big loaded question, but in
regards to what just do you?
Speaker 1 (10:31):
think I and I guess that's a really good question to
ask too, in regards to what sothey're.
They're adults now, so let's goback to when they were kids and
like maybe when she was gettingmedical care as a child.
Has that changed till now asfar as, like, the amount of
(10:52):
support you get from medicalproviders, or is it worse and
harder with insurance?
Speaker 2 (11:01):
I mean early on, she, she, I mean I feel like okay, I
mean I feel like definitelywhen she was younger, especially
medical care, she, I mean Ifeel like it definitely is
different, because you go fromlike the pediatric age stuff to
(11:23):
the adult and then it does lookdifferent.
So I feel like it's definitelydifferent.
The support I feel is stillthere.
Oh good, we have, I meanMinnesota, there's a hospital,
medical facility called GilletteChildren's Hospital, and then
they have like a transitioningto adults and they're I'm one of
the leading, they're pretty,pretty well known for like
(11:46):
cerebral palsy, those types ofthings.
So it's proportion in thataspect.
So they have a pretty goodprogram.
Um, the school stuff to me ismore scary because like, yeah,
we mean I didn't know anythingabout disability, um, anything
about special education beforemy daughter.
So you know not knowinganything, you just go along with
(12:07):
what they tell you and then yourealize like this isn't.
I don't think they'rewithholding stuff from me on
purpose, but just not sharingeverything that's out there.
So you learn.
And then, um, we wanted to herto be fully included after she
had already gone down the pathof, you know, like a separate
special education room.
So we had that um battle prettymuch her whole school career,
(12:30):
getting her more and moreincluded.
But even that, how not much funit was like.
Now it's, you know she gets tothis age she ages out of that
school system and then thesupports in place for um for her
when she's an adult are muchless available than in the
school setting.
So there's definitely um somegetting used to that or how do
(12:53):
you navigate that part um andlooking back, I mean we should
have been thinking about it morediligently earlier, planning
better.
But I mean you can only do whatyou can do.
I mean there's only so manyhours you need to balance as a
family in your life.
I mean, what's the mostimportant?
I don't want to work all day,get done, take care of therapies
(13:16):
and all this other stuff andthen sleep and not spend time
with each other.
Speaker 1 (13:20):
So you have to balance this stuff, but
definitely for me.
Speaker 2 (13:23):
Early on I was like I said I didn't know anything.
I also had a um thought thatyou know doctors, teachers or
their positions.
I couldn't question them.
Um, like they, like I didn'thave I'm not sure where it comes
from, but didn't have theknowledge to question what they
were doing.
(13:43):
Until things would happen whereDr A would treat a seizure this
way, dr B in my mind the samething was happening would treat
it differently.
And I was like, yep, they arehuman, just like me.
They went to school, they madeI mean, they're just making
guesses or the best judgmentthey can, given the information
they have.
(14:03):
And then I was like, okay, well, I mean it's okay, I'm her
parent, if something doesn'tfeel right, I'm going to
question it.
So once that happened, itdefinitely opened my eyes,
opened doors, startedquestioning Doctors don't not
all doctors like it when youquestion them, but I mean I'm
her dad, so if I see somethingthat doesn't make sense, I'm
(14:25):
going to ask a question.
I mean that's my, I feel it'smy job and role.
So definitely, once I got overthat thought or you know that,
whatever that was thendefinitely changed things for me
, then definitely changed thingsfor me.
Speaker 1 (14:38):
I can completely agree with you and I think that
when we, as parents, are curiousI think it's a great way to put
it Like you need to staycurious.
You need to be constantlyasking is this therapy helping?
(14:59):
Is it my child growing?
Is it restricting them?
Is it?
You know all types of thingsmedical providers, therapies,
counselors.
There's just so many differentmodalities and resources that we
use and services, and there'snot just one fits all.
(15:20):
There's not one fits all foranyone.
Naturally, as you're probablyvery aware of, there's several
at a time and it can be sooverwhelming to be and, like you
said, you go in.
You're, I think, like you said,maybe taught to trust what a
(15:40):
professional says and that'swhat you believe and that's what
you go off of.
And I can hear my dad sayingyou know right now, oh well, if
the doctor says so.
You know, kind of and I'm like,well, but and I have a medical
paralegal background and so Iwas constantly questioning
(16:00):
things that were coming onto mydesk.
That was my job, and so I seehow that is.
It's tricky for people untilthey're taught, or until they
learn how to stand up and dothat for themselves.
Speaker 2 (16:14):
Yeah, and the story that brought that to head for me
was she was having like a90-minute grand mal seizure.
She's in the ER.
They tried all the I mean,they've tried the normal rescue
meds and then they're going forsomething else which was in a
syringe.
So they brought it in and theythe doctor said you know, we're
going to put this in the line.
We got to like slowly put it inover five minutes or it's going
(16:37):
to burn her veins.
So they did that way.
Way.
The next time, same thing.
They took it, they brought thesyringe in, stuck it in the line
, went shh, and I was like whoa,I'm like what just happened?
They're like what?
I'm like the last time she washere in the same situation, the
doctor had them put it in overfive minutes.
Now you just shot it in theline in one shot.
So either last time you tooktoo long or this time you burned
(17:01):
her veins and they're like theyjust were not happy with me.
But I'm like, hold on.
I mean something was different.
So what's going on?
So yeah, did they answer that?
I don't think they answered itin the moment.
We ended up having to like meetwith the head of the ER and got
like a protocol in place to likemeet with the head of the ER
(17:23):
and got like a protocol in place.
So the inner file there waslike a protocol everybody would
follow.
So but then you're also, yourparents are in, she's in the ER,
the seizures aren't stopping.
I mean, how much, how muchquestions do I want to ask
because I don't want them to,you know, get upset or take
their time away from trying to,you know, help you get better.
So then you're like in thatposition Do I bring it up now?
Do I bring it up later?
Like what's the best time tosay something?
Speaker 1 (17:45):
Oh my gosh, I can't imagine what a like resilient
daughter and father, brother,sister, mother, whatever,
whoever all the pieces are.
You guys are just so resilientto get, to have to go through
these things over and over againand and to be able to share the
(18:06):
stories and the education.
Tell us a little bit more aboutthe inclusion dad podcast and
what you talk about, the kind ofguests you have on things like
that, or, if you don't, if youjust do yourself.
Yeah.
Speaker 2 (18:18):
Um, so what I've been doing is I just I've gotten
only two of them where I've doneshort like episodes by myself
talking about stuff.
Otherwise it's getting parentsof children with disabilities on
, or people with disabilities,and it's just like a short
conversation.
I just want to talk aboutinclusion.
So I always ask my guests likewhat's your definition of
(18:38):
inclusion?
About inclusion, so I alwaysask my guests like what's your
definition of inclusion?
And then another question Ialways ask is what is something
that we can do today to make theworld more inclusive and that
one comes more from?
For a long time, I mean, I lookinto the laws.
The law says, in my opinion,they should start off being
included and then, if thatdoesn't work, you know they
can't with with supports in thegen ed class.
(18:59):
If that doesn't work, you knowthey can't with with supports in
the gen ed class.
If that doesn't work, you knowmaybe back off and move to a
different setting.
But so that's kind of my viewof it.
But just me alone saying thatto my daughter's school didn't
make them want to do it, andthen I would get like upset,
like this is the law, this iswhat you should be doing.
Why aren't you you?
So I'm trying to shift, um youknow, my thought process or my
(19:21):
energy more into like, how can Imake the world more inclusive
daily, by small things, um,spread that message so
everybody's more people aredoing it and then I'm hoping
that, or I know that will, youknow, make the world more
inclusive overall.
So it's more of like an energywhere do I, where do I want to,
you know, put my energy towards?
So that's um, what I want to dojust with the podcast is just
(19:44):
talk about inclusion, getpeople's stories out there.
Um, a lot of I mean, um, my,I'm divorced and my partner, um,
we've been together, I thinkalmost three years and um, she
didn't have this much exposureexposure to somebody with a
disability before we gottogether.
So, just you know, she saidseveral times about, I mean
(20:06):
about ADA or different things,like I mean there's laws in
place so I thought everythingwas okay, you know, fine,
there's no issues.
But just you raise sharing mystory, raising, sharing other
people's stories, just to makepeople aware that especially
students like my daughter, who'sconsidered she qualifies for
(20:27):
special education under multiplecategories, like in those
situations, the number of kidsin the gen ed setting, with
those.
You know classifications ispretty low numbers.
So just getting that awarenessout and, you know, trying to get
them more included.
Speaker 1 (20:45):
Yeah, absolutely.
Well, I love this.
Let's turn your questionsaround on you.
What is your definition ofinclusion?
Speaker 2 (20:55):
Oh man, my girlfriend asked me that too and I'm like
I need to figure this out.
So I mean my definition ofinclusion is just, I mean to me
it's kind of like you talkedabout belonging or I think.
I mean I'm old enough toremember the show Cheers, where
you just go, everybody knowsyour name and they're glad you
came, yeah, that where you justgo someplace and you don't have
(21:22):
to, you know, for us you don'thave to make sure it's
wheelchair accessible, you don'thave to, you know this isn't
accessible.
So you don't feel like you sureit's accessible, like I said,
(21:43):
and just go and enjoy it and nothave to think about all the
inaccessibility and that type ofthing.
And even being invited.
Just if there's a party or ifthere's a family thing and
they're having a birthday party,well I mean, if it's not at a
place where my daughter with awheelchair can get into, then I
mean you makes you feel like youdon't want us to participate.
(22:07):
So just, you know, making sureyour events are accessible for
people in wheelchairs or othermobility needs or sensory needs
and stuff like that.
Speaker 1 (22:17):
So important and that's a.
It's a really big question howcan you change the world?
And you kind of answered italready and as far as, like you
know, you're trying to makechanges yourself and I think
that that's the best we can dois is make changes ourselves to,
in the way we model ourbehavior towards all humans.
(22:41):
You know, I hope that mychildren see that some of my
best friends out in the worldare the baggers with Down
syndrome and the people at thegas station that are, you know,
taking the garbages out, and I'mlike, thank you, if you didn't
do this, oh my gosh, what wouldbe happening right now there,
would you know?
(23:01):
Like your, every job, everyperson's piece that they give to
society and productivity isvalue, and not enough people
give value and see value andoffer that.
You know, handout or whatever,not even like that.
I don't mean it like that, but,like you know, they don't see
(23:22):
them and I love to do that.
I love to just acknowledgepeople and say thank you to them
(23:49):
and I hope that my kids seethat she has compassion,
especially for those that shesees may be underserved, and I
think that it comes so much likeeasier almost for a sibling and
she is autistic as well as herbrother, who is profoundly
(24:12):
autistic and has many moresupport needs than her.
So she can see that challenge,if you will, and in where we
need to give supports.
But, just like you said, we, wewe'd love to go anywhere and
not have to be double looked atthree or four times to see why
somebody in our family might beacting differently than everyone
(24:35):
else.
You know, or it's, yeah, it'stime for change in, in
perspective, like perception forothers, not just like they need
to take action and they need totake mental like actions to
start stop treating people badly.
(24:57):
I don't know, yeah for sure it'scrazy yeah what kind of things
um do you have that you'reworking on in the future, any
programs or ideas or things thatyou have coming up?
Speaker 2 (25:11):
um, right now there isn't anything really else in
the pipeline.
I just kind of started thepodcast a couple months ago.
It just felt like the universewas telling me I should.
So I did that and now just wentthrough that door, so just kind
of seeing where it goes.
I mean, it's just been reallygreat meeting people such as
yourself, um, sharingconversations, um you know that
(25:33):
piece, I'm not exactly surewhere it's gonna end up it.
Just right now this is theright place to be, so we'll see
where it goes.
Um, there's just so many.
Part of my thing is I see somany things that could, you
could work on or need to beworked on, and then you get kind
of overwhelmed with where's thebest place to spend my energy.
So right now it's the podcast,for sure.
Speaker 1 (25:56):
Yeah Well, I think you're doing the right thing and
and congratulations on startingit, and I really can't wait to
see how wonderful it is in thefuture.
I'd love to check back in withyou and see how it's been going
and, of course, there's so manywonderful people I'd love to put
you in touch with that.
(26:17):
I think you would find value in, and vice versa, so that'll be
fantastic.
It's one of my favorite partsreally about podcasting is the
connections that you can make,um some without ever even
knowing that they will be a partof your life or that it will
have an effect on them.
Um, so it's really.
(26:39):
It's really interesting theopportunities that can come out
of it, out of being passionateabout your, that, your drive,
whatever drives you.
Speaker 2 (26:48):
So there's been a couple I mean more than once,
probably close to five now, justin the short time I've been
doing it already where just I'vehad guests on or been on
somebody's show and they're like, just by you sharing your story
, it's helped me be able toshare my story.
So stuff like that where youknow you're doing the right
thing or stuff like that, soit's pretty fun.
Speaker 1 (27:08):
That's the best.
Yeah, I think that I do likeautistic events where I host
autistics to come and speakaround the world and some
opportunities that come out ofthose things.
Oh my gosh, my heart, it just,it just melts all over the place
because you know they'll calland they'll be like whoa.
(27:29):
I got in touch with thisemployer that you interviewed on
, you know had in this event,and now I'm starting this job
and I'm going to have the youknow the income I deserve and
I'm being you know.
There's just there's so much tobe gained from coming together
(27:49):
and really what we're doing fromcoming together and really what
we're doing creating a sense ofbelonging and inclusion.
So please join us, please joinus and join the.
The light that we're trying tospread and, you know, show onto
everyone.
So, yeah, wonderful work thatyou're doing.
And, before we go, telleveryone where they can go to
(28:10):
find you and look for thepodcast, have a website, all
that good stuff.
Speaker 2 (28:17):
Sure, so my website is theinclusivedadcom.
Has all my links to my socialson there, and then the podcast
links are on there.
It's on podcasts is on Appleall the big platforms, just the
inclusive dad.
If you look that up, it's onthere.
It's on podcast is on um appleall the big platforms, just the
inclusive dad.
If you look that up, it's onthere.
Speaker 1 (28:34):
So I misspelled it.
I'm like, yeah, that mighthappen once in a while.
Right, the inclusive dadcom.
I think I got it that time.
Yeah, bam perfect, there you.
Oh, it's been such a pleasureand such a great conversation
(28:54):
with you today.
I hope we can stay in touch andyou know, catch up with one
another and share guests and allof those things, because it's
such a wonderful way to bringeducation and share, because,
like you said, so many peoplecan gain things from
conversations with others and Isurely love that about
(29:17):
podcasting as well.
Speaker 2 (29:19):
Yeah.
Thank you so much for having me.
Speaker 1 (29:21):
Yeah, it's been a great conversation.
Thank you so much.
And yeah, it's, we're headinginto.
Where are you at?
Oh, you said Minnesota and it'sgot.
You said it got down to 25 thismorning.
We also got our first snow lastnight.
I'm in utah and our mountainsare all covered in their first
light snow and, yes, we had toturn our heaters up a little bit
(29:44):
this morning you can keep thesnow for now yeah, yeah right.
Oh, thanks, I'd like for it toget back to 70.
Actually, that would be nice tofinish fallout, but no, it's
great.
Well, thank you so much foryour time and I look forward to
staying in touch.
Yes.
Welcome to the SJ Child Show, where a little bit
of knowledge can turn fear intounderstanding.
Enjoy the show.
Hi, and thanks for joining theSJ Childs show today.
(00:31):
I'm your host, sj Childs, andtoday, oh, I guess we won't be
joining you shortly.
We are here now.
Hello, take the banner down.
We are here with Aaron, and isit DeVries?
Devries.
Devries it's so nice to meetyou and have you here today.
(00:51):
I'm really looking forward tothis conversation.
Tell us a little bit aboutyourself, introduction, and what
brings you here today.
Speaker 2 (00:59):
Yeah, so my name is Aaron DeVries.
I live in Minnesota.
I have all my life.
Today it's pretty nice out.
I got down to 25 earlier thisweek so I'm already feeling some
cold weather here, but I'velived here all my life.
I have two children.
My son is, let's see, 23.
My daughter just turned 22.
(01:20):
Wow, she was diagnosed at threemonths old with epilepsy and
then cerebral palsy after that,so got introduced to the
disability world through mydaughter and then learned about
inclusion later on and beenfighting for her to be included
since that point in time and I'mjust wanting to spread the word
(01:41):
about inclusion.
I've given two TEDx talks oninclusion.
I started my own podcast acouple months ago talking with
people about inclusion.
So I have inclusion tattooed onmy arm, so I'm kind of all in
on inclusion.
Speaker 1 (01:55):
I love it.
I love it.
You're the inclusion dad, justlike the logo says, and so what
a wonderful way to represent andit sometimes is for my story as
well my son fueled our passionsand our desires to help educate
(02:16):
and bring change in our societyfor the purpose of being
included.
You know, I heard on thispodcast the other day somebody
saying the difference betweenbelonging and fitting in, and
when you belong, you don't haveto fit in, you don't have to try
(02:39):
to fit in.
When you belong, you're just apart of it.
When you fit in, then you'remasking, then you're having to
wear the certain clothes oryou're having to speak a certain
way, or I just thought that was.
I hadn't really looked at itthat way and thought what a
wonderful perspective and greatway to teach, especially kids.
(03:00):
You know that you want to findwhere you belong, where you can
be yourself and let your masksdown, and things like that.
How hard was it, as a dad, tofind a sense of community and a
sense of belonging?
Speaker 2 (03:18):
I mean as a dad.
I guess, if I'm being honest, Ihaven't, I mean I don't have a
pretty like a dad communityaround me.
Honestly, it's mostly evenstill a lot of.
Any meeting I go to, it'susually, I mean, if there's
other guys there.
It's kind of surprising to me.
So, like the disability world,at least where I'm at, it's
(03:41):
heavily female, so it's which is.
I mean I'm, I'm comfortable inthat setting.
It's just interesting howheavily female in my experience
it's been.
But as far as I mean, I have asense of community with, you
know, other parents, probablymostly moms, but there are some
dads who I hang out with thatyou know have children with
(04:04):
disabilities or on IEPs, so I doget that community from them as
well.
Speaker 1 (04:10):
Great.
It is tricky, isn't it?
And it can be so isolating, andespecially when every human
goes into having children with,oh we're going to do this and
we're going to do that, and youhave ideas in your head of what
you might do and, um, it's neverlike anyone's fault or, you
(04:33):
know, guilt or anything likethat, but the ideas are still
not being able to move forwardand you have to let those go,
and that can be tricky.
But creating, like your owncommunities and things I mean
that can be really hard too, butit is necessary sometimes when
you find yourself in these typesof things.
(04:55):
So, just like you're doing withyour podcast, I love that idea
and I think it's reallyimportant to have the dad
representation and I hear whatyou're saying how there's so
many you know moms out therebeing the advocates and being
(05:16):
the fighters.
And it's not to say that thedads aren't.
They're just not as vocal oropen about it, and we'd love to
see that.
We'd love to see the idea ofbeing an advocate change.
What do you think is maybe like, what is a drawback that some
(05:38):
of these guys might have, beinga guy yourself, to be able to
say why aren't enough peopledads coming to the tables?
Speaker 2 (05:51):
um, I mean, I don't.
That's a great question, I, andif I think to myself, how did I
, how did I get?
What about me, led me down thisadvocacy path?
I'm not really sure either.
I mean my dad growing up wewent to church, every time the
doors open, and my dad wouldalways.
(06:11):
If the preacher was up theresaying something during a sermon
, my dad that week would go andyou know, look for himself, see
what his view on the Bible wasor what he thought it said, and
then, you know, bring it up.
So I kind of have that rolemodel of you know not just
taking everything at face value,maybe questioning things.
(06:31):
That thing, I'm not sure ifthat, you know, comes into it.
It's just I also get from mymom.
I mean, if she watches aHallmark movie she's crying, and
I have similar, not Hallmarkmovies because I don't watch
them, but if it's somethingwhere it's, you know, more
emotional, I'll tear up.
So maybe just DNA, that kind ofstuff.
(06:59):
For what I was around, where mystrengths lie, which I feel like
in a mom-dad-child relationship, you kind of have to whoever is
best at which piece of the youknow responsibility, maybe have
them be able to do that I'm notsaying that I'm better than my
daughter's mom in the situation.
(07:20):
It's just something that I likedigging into, like spending
time on, and early on in myjourney I realized that I mean
she was having 90 minute grandmal seizures.
So I'm like this I'm not goingto work 60, 80 hours a week,
never be home.
I mean I could.
(07:40):
I don't want to be doing thatSomething happens and I'm not
able to spend time with her andI'm not able to spend time with
her.
So early on I kind of got overthe misconception that I should
be working all the time as a dadand just doing that.
So maybe that helped.
I'm not exactly sure, but Ifeel like maybe it's just the
roles that we still have insociety and dads versus moms.
I guess I haven't come with agood answer, it's just.
(08:05):
I mean it's kind of interestingthough.
Speaker 1 (08:06):
Well, it seems to me like your parents probably
instilled um, a really greatsense of emotional intelligence
in you for one, which gave youthe um I, you know, the ideation
that you could do more for yourchild than other people with
society.
(08:27):
Right, it's just crazy Really.
When you're in the disabilityworld in any way, you very, very
quickly realize that societyisn't a lifestyle that your
family lives by and that allthat goes to the wayside.
I'll tell you, I used to jokethat it was like my house had
(08:49):
round walls instead of corners.
That's how different it was.
Over here, nothing even lookedlike a real house.
I mean, of course it is just aregular house.
But the inside and the peoplethat exist in it, they exist in
their own dimension of the world, not in society's idea of what
it is.
And giving space to that andmaking that environment your
(09:12):
number one intention is soimportant for the development of
that child, of thatrelationship.
I love what you said about beingresponsible and accountable,
kind of, for the role that youprovide, because, yeah, I had
(09:33):
careers.
I could have made great moneyand kept working, but my husband
also had a fine career.
That could be fine.
I wanted to stay home.
I always wanted to be a mom.
We both knew it'd be great, youknow, for for me to do that and
being responsible andaccountable to say, okay, well,
I don't, I'm going to have toforfeit those careers, those
(09:54):
ideas to stay at home and createthis environment.
You go to work.
I trust this.
You know part of your plan, ofyour role, so I think that's
really smart.
Parenting or co-parenting, ifthat's what you're doing, yeah
for sure.
Yeah, I love that.
What are your plans for what?
(10:18):
Do you see that kind of needsto change?
Are there any?
I know that's that's a bigloaded question, but change, are
there any?
Speaker 2 (10:28):
I know that's, that's a big loaded question, but in
regards to what just do you?
Speaker 1 (10:31):
think I and I guess that's a really good question to
ask too, in regards to what sothey're.
They're adults now, so let's goback to when they were kids and
like maybe when she was gettingmedical care as a child.
Has that changed till now asfar as, like, the amount of
(10:52):
support you get from medicalproviders, or is it worse and
harder with insurance?
Speaker 2 (11:01):
I mean early on, she, she, I mean I feel like okay, I
mean I feel like definitelywhen she was younger, especially
medical care, she, I mean Ifeel like it definitely is
different, because you go fromlike the pediatric age stuff to
(11:23):
the adult and then it does lookdifferent.
So I feel like it's definitelydifferent.
The support I feel is stillthere.
Oh good, we have, I meanMinnesota, there's a hospital,
medical facility called GilletteChildren's Hospital, and then
they have like a transitioningto adults and they're I'm one of
the leading, they're pretty,pretty well known for like
(11:46):
cerebral palsy, those types ofthings.
So it's proportion in thataspect.
So they have a pretty goodprogram.
Um, the school stuff to me ismore scary because like, yeah,
we mean I didn't know anythingabout disability, um, anything
about special education beforemy daughter.
So you know not knowinganything, you just go along with
(12:07):
what they tell you and then yourealize like this isn't.
I don't think they'rewithholding stuff from me on
purpose, but just not sharingeverything that's out there.
So you learn.
And then, um, we wanted to herto be fully included after she
had already gone down the pathof, you know, like a separate
special education room.
So we had that um battle prettymuch her whole school career,
(12:30):
getting her more and moreincluded.
But even that, how not much funit was like.
Now it's, you know she gets tothis age she ages out of that
school system and then thesupports in place for um for her
when she's an adult are muchless available than in the
school setting.
So there's definitely um somegetting used to that or how do
(12:53):
you navigate that part um andlooking back, I mean we should
have been thinking about it morediligently earlier, planning
better.
But I mean you can only do whatyou can do.
I mean there's only so manyhours you need to balance as a
family in your life.
I mean, what's the mostimportant?
I don't want to work all day,get done, take care of therapies
(13:16):
and all this other stuff andthen sleep and not spend time
with each other.
Speaker 1 (13:20):
So you have to balance this stuff, but
definitely for me.
Speaker 2 (13:23):
Early on I was like I said I didn't know anything.
I also had a um thought thatyou know doctors, teachers or
their positions.
I couldn't question them.
Um, like they, like I didn'thave I'm not sure where it comes
from, but didn't have theknowledge to question what they
were doing.
(13:43):
Until things would happen whereDr A would treat a seizure this
way, dr B in my mind the samething was happening would treat
it differently.
And I was like, yep, they arehuman, just like me.
They went to school, they madeI mean, they're just making
guesses or the best judgmentthey can, given the information
they have.
(14:03):
And then I was like, okay, well, I mean it's okay, I'm her
parent, if something doesn'tfeel right, I'm going to
question it.
So once that happened, itdefinitely opened my eyes,
opened doors, startedquestioning Doctors don't not
all doctors like it when youquestion them, but I mean I'm
her dad, so if I see somethingthat doesn't make sense, I'm
(14:25):
going to ask a question.
I mean that's my, I feel it'smy job and role.
So definitely, once I got overthat thought or you know that,
whatever that was thendefinitely changed things for me
, then definitely changed thingsfor me.
Speaker 1 (14:38):
I can completely agree with you and I think that
when we, as parents, are curiousI think it's a great way to put
it Like you need to staycurious.
You need to be constantlyasking is this therapy helping?
(14:59):
Is it my child growing?
Is it restricting them?
Is it?
You know all types of thingsmedical providers, therapies,
counselors.
There's just so many differentmodalities and resources that we
use and services, and there'snot just one fits all.
(15:20):
There's not one fits all foranyone.
Naturally, as you're probablyvery aware of, there's several
at a time and it can be sooverwhelming to be and, like you
said, you go in.
You're, I think, like you said,maybe taught to trust what a
(15:40):
professional says and that'swhat you believe and that's what
you go off of.
And I can hear my dad sayingyou know right now, oh well, if
the doctor says so.
You know, kind of and I'm like,well, but and I have a medical
paralegal background and so Iwas constantly questioning
(16:00):
things that were coming onto mydesk.
That was my job, and so I seehow that is.
It's tricky for people untilthey're taught, or until they
learn how to stand up and dothat for themselves.
Speaker 2 (16:14):
Yeah, and the story that brought that to head for me
was she was having like a90-minute grand mal seizure.
She's in the ER.
They tried all the I mean,they've tried the normal rescue
meds and then they're going forsomething else which was in a
syringe.
So they brought it in and theythe doctor said you know, we're
going to put this in the line.
We got to like slowly put it inover five minutes or it's going
(16:37):
to burn her veins.
So they did that way.
Way.
The next time, same thing.
They took it, they brought thesyringe in, stuck it in the line
, went shh, and I was like whoa,I'm like what just happened?
They're like what?
I'm like the last time she washere in the same situation, the
doctor had them put it in overfive minutes.
Now you just shot it in theline in one shot.
So either last time you tooktoo long or this time you burned
(17:01):
her veins and they're like theyjust were not happy with me.
But I'm like, hold on.
I mean something was different.
So what's going on?
So yeah, did they answer that?
I don't think they answered itin the moment.
We ended up having to like meetwith the head of the ER and got
like a protocol in place to likemeet with the head of the ER
(17:23):
and got like a protocol in place.
So the inner file there waslike a protocol everybody would
follow.
So but then you're also, yourparents are in, she's in the ER,
the seizures aren't stopping.
I mean, how much, how muchquestions do I want to ask
because I don't want them to,you know, get upset or take
their time away from trying to,you know, help you get better.
So then you're like in thatposition Do I bring it up now?
Do I bring it up later?
Like what's the best time tosay something?
Speaker 1 (17:45):
Oh my gosh, I can't imagine what a like resilient
daughter and father, brother,sister, mother, whatever,
whoever all the pieces are.
You guys are just so resilientto get, to have to go through
these things over and over againand and to be able to share the
(18:06):
stories and the education.
Tell us a little bit more aboutthe inclusion dad podcast and
what you talk about, the kind ofguests you have on things like
that, or, if you don't, if youjust do yourself.
Yeah.
Speaker 2 (18:18):
Um, so what I've been doing is I just I've gotten
only two of them where I've doneshort like episodes by myself
talking about stuff.
Otherwise it's getting parentsof children with disabilities on
, or people with disabilities,and it's just like a short
conversation.
I just want to talk aboutinclusion.
So I always ask my guests likewhat's your definition of
(18:38):
inclusion?
About inclusion, so I alwaysask my guests like what's your
definition of inclusion?
And then another question Ialways ask is what is something
that we can do today to make theworld more inclusive and that
one comes more from?
For a long time, I mean, I lookinto the laws.
The law says, in my opinion,they should start off being
included and then, if thatdoesn't work, you know they
can't with with supports in thegen ed class.
(18:59):
If that doesn't work, you knowthey can't with with supports in
the gen ed class.
If that doesn't work, you knowmaybe back off and move to a
different setting.
But so that's kind of my viewof it.
But just me alone saying thatto my daughter's school didn't
make them want to do it, andthen I would get like upset,
like this is the law, this iswhat you should be doing.
Why aren't you you?
So I'm trying to shift, um youknow, my thought process or my
(19:21):
energy more into like, how can Imake the world more inclusive
daily, by small things, um,spread that message so
everybody's more people aredoing it and then I'm hoping
that, or I know that will, youknow, make the world more
inclusive overall.
So it's more of like an energywhere do I, where do I want to,
you know, put my energy towards?
So that's um, what I want to dojust with the podcast is just
(19:44):
talk about inclusion, getpeople's stories out there.
Um, a lot of I mean, um, my,I'm divorced and my partner, um,
we've been together, I thinkalmost three years and um, she
didn't have this much exposureexposure to somebody with a
disability before we gottogether.
So, just you know, she saidseveral times about, I mean
(20:06):
about ADA or different things,like I mean there's laws in
place so I thought everythingwas okay, you know, fine,
there's no issues.
But just you raise sharing mystory, raising, sharing other
people's stories, just to makepeople aware that especially
students like my daughter, who'sconsidered she qualifies for
(20:27):
special education under multiplecategories, like in those
situations, the number of kidsin the gen ed setting, with
those.
You know classifications ispretty low numbers.
So just getting that awarenessout and, you know, trying to get
them more included.
Speaker 1 (20:45):
Yeah, absolutely.
Well, I love this.
Let's turn your questionsaround on you.
What is your definition ofinclusion?
Speaker 2 (20:55):
Oh man, my girlfriend asked me that too and I'm like
I need to figure this out.
So I mean my definition ofinclusion is just, I mean to me
it's kind of like you talkedabout belonging or I think.
I mean I'm old enough toremember the show Cheers, where
you just go, everybody knowsyour name and they're glad you
came, yeah, that where you justgo someplace and you don't have
(21:22):
to, you know, for us you don'thave to make sure it's
wheelchair accessible, you don'thave to, you know this isn't
accessible.
So you don't feel like you sureit's accessible, like I said,
(21:43):
and just go and enjoy it and nothave to think about all the
inaccessibility and that type ofthing.
And even being invited.
Just if there's a party or ifthere's a family thing and
they're having a birthday party,well I mean, if it's not at a
place where my daughter with awheelchair can get into, then I
mean you makes you feel like youdon't want us to participate.
(22:07):
So just, you know, making sureyour events are accessible for
people in wheelchairs or othermobility needs or sensory needs
and stuff like that.
Speaker 1 (22:17):
So important and that's a.
It's a really big question howcan you change the world?
And you kind of answered italready and as far as, like you
know, you're trying to makechanges yourself and I think
that that's the best we can dois is make changes ourselves to,
in the way we model ourbehavior towards all humans.
(22:41):
You know, I hope that mychildren see that some of my
best friends out in the worldare the baggers with Down
syndrome and the people at thegas station that are, you know,
taking the garbages out, and I'mlike, thank you, if you didn't
do this, oh my gosh, what wouldbe happening right now there,
would you know?
(23:01):
Like your, every job, everyperson's piece that they give to
society and productivity isvalue, and not enough people
give value and see value andoffer that.
You know, handout or whatever,not even like that.
I don't mean it like that, but,like you know, they don't see
(23:22):
them and I love to do that.
I love to just acknowledgepeople and say thank you to them
(23:49):
and I hope that my kids seethat she has compassion,
especially for those that shesees may be underserved, and I
think that it comes so much likeeasier almost for a sibling and
she is autistic as well as herbrother, who is profoundly
(24:12):
autistic and has many moresupport needs than her.
So she can see that challenge,if you will, and in where we
need to give supports.
But, just like you said, we, wewe'd love to go anywhere and
not have to be double looked atthree or four times to see why
somebody in our family might beacting differently than everyone
(24:35):
else.
You know, or it's, yeah, it'stime for change in, in
perspective, like perception forothers, not just like they need
to take action and they need totake mental like actions to
start stop treating people badly.
(24:57):
I don't know, yeah for sure it'scrazy yeah what kind of things
um do you have that you'reworking on in the future, any
programs or ideas or things thatyou have coming up?
Speaker 2 (25:11):
um, right now there isn't anything really else in
the pipeline.
I just kind of started thepodcast a couple months ago.
It just felt like the universewas telling me I should.
So I did that and now just wentthrough that door, so just kind
of seeing where it goes.
I mean, it's just been reallygreat meeting people such as
yourself, um, sharingconversations, um you know that
(25:33):
piece, I'm not exactly surewhere it's gonna end up it.
Just right now this is theright place to be, so we'll see
where it goes.
Um, there's just so many.
Part of my thing is I see somany things that could, you
could work on or need to beworked on, and then you get kind
of overwhelmed with where's thebest place to spend my energy.
So right now it's the podcast,for sure.
Speaker 1 (25:56):
Yeah Well, I think you're doing the right thing and
and congratulations on startingit, and I really can't wait to
see how wonderful it is in thefuture.
I'd love to check back in withyou and see how it's been going
and, of course, there's so manywonderful people I'd love to put
you in touch with that.
(26:17):
I think you would find value in, and vice versa, so that'll be
fantastic.
It's one of my favorite partsreally about podcasting is the
connections that you can make,um some without ever even
knowing that they will be a partof your life or that it will
have an effect on them.
Um, so it's really.
(26:39):
It's really interesting theopportunities that can come out
of it, out of being passionateabout your, that, your drive,
whatever drives you.
Speaker 2 (26:48):
So there's been a couple I mean more than once,
probably close to five now, justin the short time I've been
doing it already where just I'vehad guests on or been on
somebody's show and they're like, just by you sharing your story
, it's helped me be able toshare my story.
So stuff like that where youknow you're doing the right
thing or stuff like that, soit's pretty fun.
Speaker 1 (27:08):
That's the best.
Yeah, I think that I do likeautistic events where I host
autistics to come and speakaround the world and some
opportunities that come out ofthose things.
Oh my gosh, my heart, it just,it just melts all over the place
because you know they'll calland they'll be like whoa.
(27:29):
I got in touch with thisemployer that you interviewed on
, you know had in this event,and now I'm starting this job
and I'm going to have the youknow the income I deserve and
I'm being you know.
There's just there's so much tobe gained from coming together
(27:49):
and really what we're doing fromcoming together and really what
we're doing creating a sense ofbelonging and inclusion.
So please join us, please joinus and join the.
The light that we're trying tospread and, you know, show onto
everyone.
So, yeah, wonderful work thatyou're doing.
And, before we go, telleveryone where they can go to
(28:10):
find you and look for thepodcast, have a website, all
that good stuff.
Speaker 2 (28:17):
Sure, so my website is theinclusivedadcom.
Has all my links to my socialson there, and then the podcast
links are on there.
It's on podcasts is on Appleall the big platforms, just the
inclusive dad.
If you look that up, it's onthere.
It's on podcast is on um appleall the big platforms, just the
inclusive dad.
If you look that up, it's onthere.
Speaker 1 (28:34):
So I misspelled it.
I'm like, yeah, that mighthappen once in a while.
Right, the inclusive dadcom.
I think I got it that time.
Yeah, bam perfect, there you.
Oh, it's been such a pleasureand such a great conversation
(28:54):
with you today.
I hope we can stay in touch andyou know, catch up with one
another and share guests and allof those things, because it's
such a wonderful way to bringeducation and share, because,
like you said, so many peoplecan gain things from
conversations with others and Isurely love that about
(29:17):
podcasting as well.
Speaker 2 (29:19):
Yeah.
Thank you so much for having me.
Speaker 1 (29:21):
Yeah, it's been a great conversation.
Thank you so much.
And yeah, it's, we're headinginto.
Where are you at?
Oh, you said Minnesota and it'sgot.
You said it got down to 25 thismorning.
We also got our first snow lastnight.
I'm in utah and our mountainsare all covered in their first
light snow and, yes, we had toturn our heaters up a little bit
(29:44):
this morning you can keep thesnow for now yeah, yeah right.
Oh, thanks, I'd like for it toget back to 70.
Actually, that would be nice tofinish fallout, but no, it's
great.
Well, thank you so much foryour time and I look forward to
staying in touch.
Yes.
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On Purpose with Jay Shetty
I’m Jay Shetty host of On Purpose the worlds #1 Mental Health podcast and I’m so grateful you found us. I started this podcast 5 years ago to invite you into conversations and workshops that are designed to help make you happier, healthier and more healed. I believe that when you (yes you) feel seen, heard and understood you’re able to deal with relationship struggles, work challenges and life’s ups and downs with more ease and grace. I interview experts, celebrities, thought leaders and athletes so that we can grow our mindset, build better habits and uncover a side of them we’ve never seen before. New episodes every Monday and Friday. Your support means the world to me and I don’t take it for granted — click the follow button and leave a review to help us spread the love with On Purpose. I can’t wait for you to listen to your first or 500th episode!