November 21, 2022 • 41 mins
In episode three, Black Feathers hosts Crystal and Shauna, along with guest Miranda Carman, a member of the Muscogee Creek Nation and a clinical social worker who’s also a passionate advocate for children with autism and their families, will discuss Miranda’s own personal experience caring for her son with autism and the challenges they faced as a family with trying to get a clear diagnosis from physicians within the Tribal community. All three women hope this episode and the resources provided, help shed light on the early signs of autism, emphasize the importance of parental advocacy for children with autism, and the importance of culturally rooted services and treatment.
For the full list of resources, please visit: blackfeathers.org
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Crystal Hernandez (00:00):
Welcome to black feathers podcast, a true
(00:02):
and honest conversation aboutdisabilities for all. I'm your
host, Dr. Crystal Hernandez fromthe Cherokee Nation,
Shauna Humphreys (00:09):
and I am Shawna Humphreys from Choctaw
Nation.
Crystal Hernandez (00:12):
Today, we have Miranda Carmen with us from
the Muscogee Creek Nation. I metMiranda a few years ago, through
our tribal autism work on anational level, we then
discovered we had so much morein common than just the love of
the work. We discovered, we bothlived in Oklahoma, we both had
children who were autistic. Andin fact, they were both
receiving services from the sameplace. So from that point on, I
(00:37):
am so thrilled and happy to callher a friend and a sister. So
Miranda, welcome.
Miranda Carman (00:43):
Thank you. Thank you for the invitation. And I am
glad to have met you as well,Crystal, and it's been a
pleasure getting to know youover the past, I guess, a couple
of years now. And just all ofthe wonderful work that you do
in Indian country.
Crystal Hernandez (01:03):
Thank you. So why don't you tell us a little
bit about yourself and in someof the work you do, but then
also your personal tie into thedisability community.
Miranda Carman (01:15):
Okay, so, Miranda, Carmen, I currently
serve as the secretary ofcommunity and Human Services at
Muskogee Creek Nation. Bybackground, I am a licensed
clinical social worker and spentthe prior to me taking this
position at the tribe served asthe mental health lead at Indian
(01:41):
Health Services headquarters.
And so in that position, I wasable to make the connection with
the interagency group at thefederal level. I'm involved in a
lot of things at the tribe thatdeal with social services and
social work. But I will saythat, since my son was diagnosed
(02:02):
with autism, it's been a bigpiece of my heart. And it's been
something that I've beenpassionate about ever since. And
just, and I'm glad to be ontoday to be able to share a
little bit about what I'velearned and a little bit about
my story and accessing servicesin Indian country. So I guess
(02:26):
I'll start just just start fromthe beginning of whenever I
first started to see warningsigns, and I hope that some of
the experiences I share todayare helpful for moms out there.
But, um, some of the earlywarning signs that I saw and my
(02:47):
son, he around age, right beforehis second birthday, he started
to lose a lot of his language.
And I, you know, was, you know,thinking and knowing that I had,
you know, not a lot ofexperience with autism, but I,
(03:08):
I'm gonna go back, so I didn'thave a lot of experience with
autism. But I did have someintroduction to autism and kind
of what to look for. And so Iwas started telling my husband,
you know, well, he's, he'slosing language. And he was
like, well talk to thepediatrician about it. And I was
(03:28):
like, Okay, I will. And so whenI went in to talk to the
pediatrician, he had a son thatwas on the spectrum. So he was
somewhat open to it. And, youknow, just kind of hearing me
out and my concerns, but then hewas still very hesitant to
provide me with any referral, oranything like that. And this was
(03:50):
here at our health clinic at thetribe. And so after seeing him a
couple more times, I think Ifinally convinced him that, you
know, I think it was at least,you know, enough to be concerned
and enough to make a referral.
And so we made, you know, hemade the referral for us. And we
were placed on a nine monthwaiting list. And so there, you
(04:13):
know, I was like, wow, okay,well, this is different. It's
not, you know, all of the timethat you have to wait nine
months to, you know, figure outwhat's going on with your child.
And so, you know, we're on anine month waiting list. And so
I would say he's probably atthat point, by the time I
(04:37):
convince the pediatrician, he'sprobably three. So another nine
months, he was almost four, bythe time that we got the
diagnosis just to kind of givea, a little bit of a timeline of
just you know how long it tookfrom two to four. For us to you
Have a door open for him to evenreceive any type of service. And
(05:02):
so I think that's, you know, alot of moms and parents, that's
their experience, unfortunately.
And I think that it's gettingbetter as time goes on, just
because of there's tons ofadvocacy work happening. But I
know that it can, continues tobe a barrier. And just lots of,
(05:24):
you know, awareness that needsto be brought to the importance
of early diagnosis, and howimportant it is that the earlier
that the child can get, youknow, that diagnosis, you know,
the greater chance they have ofmaking just leaps and bounds to
recovery. So, so after thediagnosis, of course, that was
(05:48):
something that, then we havethat and I'm doing research, I'm
learning as much as I can, I'mreading all of the time just
trying to, you know, learn andrecognize things that even I
wasn't paying attention to.
Before the diagnosis. So once wehad that, I was like, Okay, now,
I know what I, you know, I'm,I'm kind of dealing with and I
(06:13):
can kind of, now I can shift myfocus just directly to that
it's, you know, it's definitelyautism. And, and so some of the
things at that time that beganto be challenging is one where
we were right outside of Tulsa,but there was only one ABA
(06:35):
provider. And at the time, I wasworking for the tribe, and our
insurance wasn't covering it.
And Oklahoma insurance wasn'trequired to cover it at that
time. And so that really left usin a place where now we have
(06:55):
this diagnosis, and there's nota way for us to access treatment
for him. And so there were acouple of providers doing some
play therapy type models inTulsa. So we were taking him to
that we were taking him tospeech, occupational, just doing
(07:16):
anything that we could getaccess to, through our insurance
and even paying out of pocketfor some of the play therapy.
But, you know, as we're waitingfor, you know, the, to have an
insurance option, that that waskind of the path that we we had
to go on. And so I was workingat the tribe, like I mentioned,
(07:38):
and decided that I was going toapply for a federal position,
because in all of my research, Ifound out that federal insurance
plans if you're a federalemployee, that they did require
insurance companies to cover ABAtherapy. And so that's how I
ended up in the position whereI'm at Crystal with IHS and IHS
(08:04):
headquarters. And so from there,we had another door that opened
for him. And we were able to gethim into ABA therapy. A little
bit about I guess, or, you know,as he got older, and he, you
know, started to I would saywander more safety became like
(08:30):
just an increased risk for himconcern for me and my husband.
And so I just been reflecting onyou know, we had locks on our
doors that were high enoughwhere he couldn't get them. And
so it was like a separate lock,and we have locks on all of our
(08:50):
windows, because he loves to beoutside. He loves to be barefoot
still to this day, he wouldprefer to be outside who doesn't
wander now. But, you know, backthen he, he loved to wander. And
we had a couple of ponds aroundus. And I mean, lo and behold,
if you wanted to know where hewas at, you can guarantee that
(09:14):
if you didn't see him in yourfirst site that you needed to go
to the pond to because he wasprobably going to be standing
there looking, and he neverjumped in the pond. But he was
standing there looking everytime that we found him and it
was just the that was thescariest thing as a parent. And
so I want to definitely mentionthat because swimming is been
(09:40):
the biggest blessing for my son.
And it relieves so much stressfor me and anxiety for me when
he learned to swim. Um, he's 10Now, but he learned to swim when
he was seven. And so I want tomention that piece just because
I know that parents out therethat I know that They probably
had those same concerns. Andwhen you see it on the news that
(10:01):
is, you know, unfortunately,like, that's the, just the
horrific thing that is in thenews, when something does happen
to a child, but it is very truethat, you know, he always
migrated to water, and we haveLake houses, and he would do the
same thing at the lake. And wewould have to have someone
literally, with him 24/7 When wewere at the lake, before he
(10:27):
learned to swim, and if he evergot away, or you know, took off,
he was going to be running fullspeed ahead to the water. And so
there were there wasn't going tobe any stopping if he decided he
was going in. And so it just,it's, it's so scary, but just
(10:48):
such a big, you know, if theycan learn to swim and swimming
lessons and just getting them,you know, it's It relieves a lot
of risk, and increases thesafety. But back to the
treatment. I just want tomention, I wanted to mention
that piece. So when we startedABA therapy, of course, I was
(11:10):
reading like there's, you know,some negative reviews, there's
some positive reviews, andthere's mixed reviews, I guess,
about what ABA therapy canprovide for your son. And for
our son, I had read that it was,you know, evidence based, it's
the gold standard for autism.
And, you know, as apractitioner, you're always
(11:31):
looking for the best possible,you know, evidence based
practices for your yourpatients. And so, you know, I
really was open to ABA therapy,even with the mixed reviews
because of the research that hadbeen done. And I can say today
that it worked for my son. AndI'm thankful that the doors were
(11:55):
opened at the right time. Theyhelped us with potty training.
And he was around age five,which was a huge, huge help for
us. And they came to our houseand you know, gave us all kinds
(12:16):
of tips and tricks. And we spenta couple of days literally doing
nothing but documenting hisevery move. And by the end of
that week, we were on our way,and he was fully potty trained.
And I was jumping for joy atthat point because it was
another just huge, huge, huge,huge relief. At so his his ABA
(12:41):
therapy. He was in ABA for aboutfour years. And so he started to
transition out of ABA therapyduring the pandemic. And so he's
now going to school full timewhen he was doing ABA. There
(13:03):
were points during his therapythat he would do a half day at
school and then go to ABAtherapy. So it just really
depended on, you know, some dayshe would do full days at
therapy. Some days, we reallydid, you know, try to integrate
him as much as we could intopublic school. But now he does
spend full days at school. Andit's amazing, because in the
(13:27):
beginning, that was not apossibility for him to make it
even through a couple of hourswas a big deal. And so for him
to spend, you know, full days atschool now. He's in the fourth
grade, and, of course, has anIEP and, you know, that's
(13:50):
another thing that parents, youknow, we're their biggest
advocate, we have to read andresearch and know about all of
these things that our kiddosneed. But just we're our
biggest, or we are our child'sbiggest advocate and making sure
(14:12):
that they have, you know, thebest education options in front
of them. There's, unfortunatelyin Oklahoma, not a lot of
there's not a lot of autismschools. And I husband's from
Virginia. And, you know, that'sit's a very common thing in
(14:35):
Virginia that autism schools arein every, you know, probably in
every county, and there's countyfunding for it and it just it's
it's a lot different. And soit's unfortunate that Oklahoma
doesn't have more to offer inthat area. But I will say that
(14:56):
it's important to just make Makesure that you stay connected
with your local school, and thatyou're advocating that they're
doing all that they can toprovide your child with the best
educational options.
Crystal Hernandez (15:13):
So you mentioned a couple things, you
mentioned a couple things, Ijust want to circle on, you
know, super significant thingsthat you've said, you know, you
talked about just the, the, thetime that it took to get you
from, I have some concerns orsome questions about things I'm
seeing and feeling about my, mychild, to the point where you
(15:34):
actually get number one, thereferral to have an assessment,
but then the assessment. And sodo you see that, you know, now
in your new capacity, you know,working with with tribal
citizens and in other tribalnations? And do you see that
there's a massive gap amongproviders still? Do you see
(15:55):
those long waitlist still?
Miranda Carman (15:58):
I'm not super hands on with behavioral health,
but from what I have heard fromsome parents that have tried to
access services, that yes, thereare not a lot of providers,
there are not a lot of places torefer to, and I can't speak on
(16:19):
the pediatrician. And you know,if that has gotten better or
not, but I do believe thatthere's still a significant gap
in providers and providers beingable to get those assessments
done early. Because like, weboth know, it's, it's the most
(16:43):
important thing, and thenopening up that door, you know,
so that they can have access, ifthey, you know, are diagnosed,
that they can have access tothose critical services?
Crystal Hernandez (16:55):
Absolutely.
And, you know, even to take it alittle step further as yes, we
know, there's a huge demand andnot a whole lot of supply in
terms of those professionalsable and capable of diagnosing.
But there's even less of us thatare natives, who really
understand the culture, and whocan really serve in a different
way, there's even less. And sothat is just something I'm
(17:19):
hoping we'll see change in ourlifetime.
Miranda Carman (17:25):
Yes, that would be phenomenal. And I think this,
you know, is is one place tostart. And I know you're a huge
voice crystal for this work, andjust bringing, you know, the
awareness to this issue that wedo, we do need more people. And
I know that, you know, we'remoms, so of course, we're
(17:46):
invested in this, but it wouldbe nice to see even others
outside of, you know, the momnetwork that would join in this
fight so that we are able to getmore of our native providers on
board.
Crystal Hernandez (18:03):
Absolutely.
And then the other thing youmentioned, and I just really
want to make sure that weemphasize it is the elopement
and wandering and then theinclination towards water.
Because we know research, weknow the data that's published
is that our kiddos who areautistic who do elope or wander,
they do wander towards the waterand treat teaching swimming
(18:26):
lessons is vital, because theydrown at disproportionate
massively high and terriblerites. And so that is amazing
that you took that step becauseyou knew that he was drawn to
the water, you knew that he hedid have this tendency to want
to be out. And and you took thatstep. And so I hope that others
(18:48):
can kind of step in that samedirection. It saves lives.
Miranda Carman (18:55):
Absolutely. Yes, yes. And I spent a lot of time
with my son in the water. And wedidn't do any professional
swimming lessons. But any chancethat we had we were in the water
and just giving him everyopportunity to learn and just
working with him. And I wouldsay in the beginning, even he
(19:17):
wasn't a real fan of learning toswim even though he loved the
water and I think the resistanceto the water, it was stimulating
for him and he liked the feel ofit. But there was some there was
a time I guess whenever he wasgetting over, maybe a fear when
(19:39):
it came to learning to swimbecause it wasn't natural. But
once he you know started to kindof figure it out and learning to
tread water. He he took off andhe's I mean he is a phenomenal
swimmer. He's mastered thebackstroke, he can do the
backstroke better than Probablythe majority of people in my
(20:02):
family. So it's pretty amazing.
It's
Crystal Hernandez (20:04):
wonderful.
You know, the other thing I justwant to kind of talk about, that
you mentioned is you started inyour tribal network. And you
started through thepediatricians and clinics there.
And I've talked to, you know, somany people around different
states in tribal clinics, andand that work with children. And
I've asked some of them, youknow, do you screen? Are you
(20:24):
following the guide? Theguidance? Are you doing 18
months and 30 months andcontinual developmental?
Monitoring? Are you doing thosethings? And? And I wish that the
answer was overwhelmingly,absolutely. But it wasn't. And
so. So that's one thing, I hopewe see changes that, that folks
are being taught this, thatthey're given the resources to
(20:46):
be able to do screenings. Andthen if they are doing
screenings, that actually has atrigger to a referral. And then
and then that the referraldoesn't take nine months, one
year, two years, in some places,we're hearing up to two years of
a wait in order to get adiagnosis. And really, what
we're saying is, is thatdiagnosis, like you mentioned is
(21:07):
is the key that opens the door,so that you can get the services
and supports whatever that maybe, whatever that choice may be
for the family, or the need maybe for for the individual. But
it's definitely needed and goingthrough this whole process to
wait a year or two. It must beexcruciating. For some families,
I know I went through a weightas well for my own family. So
(21:27):
I'm just curious now that you'vestepped into a different role.
Do you think that there's arenewed or expanded focus on
developmental disabilityscreenings assessment services
within tribal nations thatyou've that you've been made
aware of? are part of well,
Miranda Carman (21:44):
I will say that we've recently at Muscogee,
Creek Nation received a HERSAgrant. That is, for it's the F
two F, and so we're going to itsHealth, Health Information
Center for families. And thenI'm also hoping that we can get
(22:08):
some support down the line to beable to expand that small pot of
money, but we do have enough forone FTE for one person to come
on board, and to solely focus onDevelopmental Disabilities,
which is the first time reallythat I know that this has
happened. So I do know on thetribal side, that there is a
(22:32):
focus on it. We did a communitysurvey not too long ago, that we
were just wanting to hear fromcitizens on what was their
concern coming out of thepandemic? And, you know, where
could we best support citizensand one of the responses that we
(22:53):
received was for special needschildren. And so that, you know,
really caught theadministration's eye, and
attention. And so we'vedefinitely focused in on that.
And, and like I said, we wereawarded, I think we're the first
tribe to be awarded tribalgovernment to be awarded the
(23:13):
HERSA, F to F health informationcenter grant, I believe the
South Central bear consortiumwas also awarded. And so I'm
just I'm really looking forwardto building on that. I know
that, you know, it's everylittle step, it seems like you
just keep kind of movingforward. But in those efforts, I
(23:36):
believe that we'll have a chanceto sit down with our health
partners, to sit down with ourpractitioners inside of our
clinics, and to really talkabout what those screeners are
and the importance of thosescreeners and making sure that
(23:56):
we're making those connectionsfor our families and our
communities. Thank
Crystal Hernandez (24:00):
you. And I have one last question. And then
I'll let Shawn ago, looking atyour own journey, what would you
say to your fellow tribalfamilies that are just starting
theirs?
Miranda Carman (24:10):
I would say would you say before diagnosis
or just any?
Crystal Hernandez (24:17):
I would honestly say looking at the
totality of your journey thatyou just described to us. What
would you tell somebody who wasjust starting their journey on
the autism journey in IndianCountry? What would you say?
Miranda Carman (24:32):
I would say that be be the best advocate that you
can for your child, no matterwhat you're trying to access and
know that your activism and yourparticipation is is going to
pave the road for somebody else.
And I think that's the mostimportant thing right now is
(24:55):
that it's it's new There's, youknow, still even at the federal
level, as you know, you know,it's still we're trying to
garner support for resources. SoI think it's just continuing to
have conversations when you can,in, in all facets, to make sure
that, you know, people areknowledgeable, and are aware of
(25:18):
the barriers that families arefacing, that people are aware of
some of the challenges inside ofour health system, I think just
being open about ourexperiences, parents, but
really, knowing that it's ajourney, it's a process. But
what it looks like right now, itwill not always look like that.
(25:44):
And so just sending a bigmessage of hope that stay, you
know, stay locked in, stayinvolved, even though I know
that it's tiring, it's, it's sotiring, your efforts and
everything that you put in, willpay off and you will start to
(26:07):
see tremendous results as timegoes on. And unfortunately,
that's kind of the thing in thebackground is time and, you
know, you're waiting and waitingto see some of those small
progressions and to see some ofthose small improvements. That
just means so much like pottytraining and swimming and, and
(26:27):
so just a real message of hopethat stay locked in and remain
hopeful because it will pay off.
Shauna Humphreys (26:38):
Yeah, I had about three questions. But
crystal, I think I'm just gotone. But I'll go ahead and ask
in case, there's something likejust specific, you wanted to say
about it, but I had the biggestpiece of advice for Native
families or parents that arenewly diagnosed, my
Miranda Carman (26:55):
reaction was different than my husband's
reaction. And I imagined that,you know, each parent will have
their own reaction to receivingthe diagnosis. And so I think,
you know, like I said before,that it's this, this is not the
(27:18):
end, it is really the beginningof your journey. And to know
that the way that it looks rightnow, is not the way that it will
look in, you know, it could be ayear, it could be two years,
you're going to see progress.
And just don't give up, don'tget discouraged that you've done
(27:40):
the best thing and getting yourchild the diagnosis, even though
it hurts tremendously. To knowthat your child is going to have
some of those challenges intheir life. But at the same
time, you've opened up a door,have resources that your child
(28:01):
now has available to them, andyou're doing the best that you
can in opening that door.
Shauna Humphreys (28:13):
Thank you.
Another question I had is solike, if you could wave a magic
wand. And looking at yourjourney from going in, you have
that perspective from travel tofederal? What What could that
travel network look like tosupport families with autism?
Crystal Hernandez (28:36):
I have that I have that magic wand. I have
that magic wand. Now we talkedwe talked I mean, we've talked
plenty and I know that for methe magic wand, I'll just go and
then you can just jump on and dofor me the magic wand is is a
lot of things. It's number one,the tribes working as a blanket
in a network. So if one tribehas some strengths, and has done
(29:00):
some great work and move thedial forward, lean in and build
together collectively. Andreally, that's the strength is
coming together and learningfrom one another but also take
the systems and the things thatyou've seen states and
government do learn from it anddo it do it better. And really
(29:20):
help the families through thisjourney, whatever that resource
or that need may be because thegaps are massive. And some
places even you know have biggergaps than others, but it's
really there's a lot of piecesto that magic wand question. So
let Miranda go.
Miranda Carman (29:37):
Yeah. So you kind of sparked just some
thoughts. I think, you know, thethe tribal relationship with the
federal government is a uniqueopportunity to tag on to some of
the efforts which I know crystalyou you've tapped into some of
that, but I look at some of thejust The conferences that happen
(30:01):
and the federal money that'spoured out into communities for
lots of different things. And I,I think that there's opportunity
for us to be in places and toshare information that in. So
I'm thinking maybe along thelines of like a task force or
(30:27):
something that brings usawareness, similar to how
they've kind of done a taskforce for, you know, family
violence and domestic violence,I believe there was a task force
on missing and murderedindigenous women. And so things
(30:50):
like that start to reallycirculate through Indian
country. But I love the idea ofcreating that network. And so
somehow, bringing theindividuals that are the
champions on the ground togetherin one place, that we're able to
stay connected and to sharethose experiences those
(31:16):
resources, because, you know, welearn from each other, you know,
all the time of, you know, well,in this state, maybe it's, you
know, a certain way, but, youknow, in another state, you
would have access to certainthings. So, there's just a lot
of differences, even from stateto state. And so we know that
(31:39):
our tribes are in every state,we have tribal members. And so
we have all of those differentscenarios that families are
facing. And so finding a way tobring those champions those
families together, and to sharethose experiences, share those
(32:00):
stories, and share what hasworked so that, you know, there
can be more services provided onthe ground and locally and that
that, you know, ultimately thatmore families are hopefully
getting services as early aspossible.
Crystal Hernandez (32:21):
I have one question I want to talk about
and, and we can talk about ittogether a few if you would,
like. You mentioned ABA andcontroversy, and I am very well
aware of the controversy. Youknow, I've had people write to
me and talk about ABA being akinto assimilation for our tribal
(32:42):
folks. And, and, of course, thenyou have, you know, all sorts of
other opinions about it bothdirections. And so I was just
curious if you wanted to sayanything about that we can tag
that through.
Miranda Carman (32:56):
I haven't heard that you probably talked to a
lot more people tonight.
Crystal Hernandez (33:03):
Just a few.
Miranda Carman (33:05):
Yeah. So I haven't heard that specifically.
That's interesting. That itwould be, I guess, compared in
that way to assimilation? I lookat it. As you know, these kids
need specialized services. And,you know, there's not a lot of,
(33:34):
of options. You know, there's afew, there's a few, that when
you're talking about that areactually research based that
have proven results. You know, Imean, anyone can come up with an
idea and, you know, say that,okay, yes, this is what you
should do, but things thatactually produce results. And so
(33:57):
that's what I would say is thatif, you know, if I'm a parent, I
want to know that the time thatI'm investing in the money that
I'm investing, is going toproduce results. And I know, you
know, every parent's probablygoing to look at it a little
differently. But I definitelythink it's more about this
(34:22):
treatment being something thathas proven to work because we do
not know everything aboutautism, we do not know. And so
not knowing means that you haveto go to what's shown to produce
results. And yeah, that wouldthat would be what I would say I
(34:44):
just I haven't had thatquestion. So I'm going to have
to think of that one a littlebit.
Crystal Hernandez (34:51):
No worries.
And so just for the podcastitself, ABA is applied
behavioral analysis in so forme, you No, I always look at it
because I hear both sides, youknow, sometimes it's
appropriate, sometimes it's not.
And I think just the the, thewideness of variety in need and
strength, and preference, I'malways one that I allow that
(35:15):
preference to come in. And youknow, if this works for your
family and for you, and it's,it's needed, you know, whatever
that treatment is, I believethat they should have access to
it. And so it's all for me aboutchoice and access and need. And
so Absolutely, thank you forsharing that. All right, is
(35:36):
there anything Miranda that wehave not asked you? Or that you
feel
Shauna Humphreys (35:39):
think I just have one last question. And it
may take a few minutes for youto think on it too. But you, you
mentioned that, you know, momsare kind of leading this this
fight. So what would be yourplea or kind of your pep talk to
someone or to our audience? Toget them to join the fight? Like
(36:00):
how could How could they help orwe help and joining in this
fight?
Miranda Carman (36:06):
I think awareness and people taking the
time to to learn about autism,if you have someone in your
family that you know, you know,has a child, you know, have a
conversation. You know, learnwhat you can be open to it.
(36:26):
Don't be afraid of it. It's not,you know, it's something that we
need to be afraid of it's, youknow, something that I think
that people just they reallyneed to be open to gaining more
(36:46):
awareness. And so I would just,you know, ask that people are
not just sorry, that people arenot judgmental, in what they see
if they have questions about abehavior that they see. Ask
about it. And you know, if youare aware of a child, and maybe
(37:10):
someone else is, you know,making a comment, or they're,
you know, asking questions aboutbehaviors out in public, and
what is that about? Educating ifyou're aware, those people if
you have that opportunity, andwhat you've learned about
autism, because there'sdefinitely a spectrum, but
(37:32):
that's something that I've seenjust in going out in public. We
go to football games, you know,all the time, though. I think
it's just, it's important toexplain those things to be open.
And then for, you know, otherson the other side to be willing
to to learn and then have aninterest in, you know, just
(37:56):
really joining us in this effortto bring awareness to these
issues, because they're realissues.
Crystal Hernandez (38:06):
Well, thank you, Miranda, for sharing your
story. We appreciate it, it andI can speak for myself, and I'm
sure Shauna feels the same way.
It was wonderful to have you andwe definitely appreciate the
work that you're doing.
Miranda Carman (38:21):
Well, I appreciate the invitation. I am
glad to have joined as well. AndI look forward to connecting in,
you know, however I can with ifit's moms, if it's parents that
are just interested if peoplewant to know more, I think
(38:41):
they'll have three individualshere that could definitely
provide information crystal Iknow is a wonderful resource and
can get you connected to prettymuch anything that you need. So
I appreciate it, Crystal andeverything that you've shared
(39:01):
with me. So thank you again,
Crystal Hernandez (39:03):
thank you.
Native proverb, we will be knownforever by the tracks we leave
on others. Native Americans havethe highest rate of disability
among all other groups. We havecompounded traumas, we have been
(39:26):
stripped of land, culture andlives. We have continued
barriers to care with equitableservice. There continues to be a
true lack of inclusion incrafting widespread policies,
programs, funding and systems.
When we know better we do betterand everyone deserves to have
compassionate understanding andbe their most authentic self.
Shauna Humphreys (39:59):
If you are someone you know I was
experiencing a mental healthcrisis called the 988 suicide
and crisis lifeline, whichprovides confidential 24/7
support by dialing 988.
Crystal Hernandez (40:09):
Join us next time for a discussion of
developmental disabilities andhear stories from our wonderful
guest. So black brothers podcastis a podcast that will occur on
a monthly basis. We hope thatyou will listen subscribe and
follow us on social media. Thankyou to Cherokee National
Treasure Tommy Wildcat for theuse of your flute music on this
(40:30):
podcast.
Shauna Humphreys (40:31):
I want to thank Lukas Fraser and the boys
for letting us use theirdrumming music. Please subscribe
to black feathers podcast. Youcan find us wherever podcasts
are found.
Crystal Hernandez (40:41):
We would love to hear from you and invite you
to submit your stories andquestions. Until next time.
Shauna Humphreys (40:46):
Thank you for joining us on this month's
journey. Remember, none of uswalk this Alone Together we are
stronger and it is the rootsthat bind us. Follow us on black
feathers.org
Welcome to black feathers podcast, a true
(00:02):
and honest conversation aboutdisabilities for all. I'm your
host, Dr. Crystal Hernandez fromthe Cherokee Nation,
Shauna Humphreys (00:09):
and I am Shawna Humphreys from Choctaw
Nation.
Crystal Hernandez (00:12):
Today, we have Miranda Carmen with us from
the Muscogee Creek Nation. I metMiranda a few years ago, through
our tribal autism work on anational level, we then
discovered we had so much morein common than just the love of
the work. We discovered, we bothlived in Oklahoma, we both had
children who were autistic. Andin fact, they were both
receiving services from the sameplace. So from that point on, I
(00:37):
am so thrilled and happy to callher a friend and a sister. So
Miranda, welcome.
Miranda Carman (00:43):
Thank you. Thank you for the invitation. And I am
glad to have met you as well,Crystal, and it's been a
pleasure getting to know youover the past, I guess, a couple
of years now. And just all ofthe wonderful work that you do
in Indian country.
Crystal Hernandez (01:03):
Thank you. So why don't you tell us a little
bit about yourself and in someof the work you do, but then
also your personal tie into thedisability community.
Miranda Carman (01:15):
Okay, so, Miranda, Carmen, I currently
serve as the secretary ofcommunity and Human Services at
Muskogee Creek Nation. Bybackground, I am a licensed
clinical social worker and spentthe prior to me taking this
position at the tribe served asthe mental health lead at Indian
(01:41):
Health Services headquarters.
And so in that position, I wasable to make the connection with
the interagency group at thefederal level. I'm involved in a
lot of things at the tribe thatdeal with social services and
social work. But I will saythat, since my son was diagnosed
(02:02):
with autism, it's been a bigpiece of my heart. And it's been
something that I've beenpassionate about ever since. And
just, and I'm glad to be ontoday to be able to share a
little bit about what I'velearned and a little bit about
my story and accessing servicesin Indian country. So I guess
(02:26):
I'll start just just start fromthe beginning of whenever I
first started to see warningsigns, and I hope that some of
the experiences I share todayare helpful for moms out there.
But, um, some of the earlywarning signs that I saw and my
(02:47):
son, he around age, right beforehis second birthday, he started
to lose a lot of his language.
And I, you know, was, you know,thinking and knowing that I had,
you know, not a lot ofexperience with autism, but I,
(03:08):
I'm gonna go back, so I didn'thave a lot of experience with
autism. But I did have someintroduction to autism and kind
of what to look for. And so Iwas started telling my husband,
you know, well, he's, he'slosing language. And he was
like, well talk to thepediatrician about it. And I was
(03:28):
like, Okay, I will. And so whenI went in to talk to the
pediatrician, he had a son thatwas on the spectrum. So he was
somewhat open to it. And, youknow, just kind of hearing me
out and my concerns, but then hewas still very hesitant to
provide me with any referral, oranything like that. And this was
(03:50):
here at our health clinic at thetribe. And so after seeing him a
couple more times, I think Ifinally convinced him that, you
know, I think it was at least,you know, enough to be concerned
and enough to make a referral.
And so we made, you know, hemade the referral for us. And we
were placed on a nine monthwaiting list. And so there, you
(04:13):
know, I was like, wow, okay,well, this is different. It's
not, you know, all of the timethat you have to wait nine
months to, you know, figure outwhat's going on with your child.
And so, you know, we're on anine month waiting list. And so
I would say he's probably atthat point, by the time I
(04:37):
convince the pediatrician, he'sprobably three. So another nine
months, he was almost four, bythe time that we got the
diagnosis just to kind of givea, a little bit of a timeline of
just you know how long it tookfrom two to four. For us to you
Have a door open for him to evenreceive any type of service. And
(05:02):
so I think that's, you know, alot of moms and parents, that's
their experience, unfortunately.
And I think that it's gettingbetter as time goes on, just
because of there's tons ofadvocacy work happening. But I
know that it can, continues tobe a barrier. And just lots of,
(05:24):
you know, awareness that needsto be brought to the importance
of early diagnosis, and howimportant it is that the earlier
that the child can get, youknow, that diagnosis, you know,
the greater chance they have ofmaking just leaps and bounds to
recovery. So, so after thediagnosis, of course, that was
(05:48):
something that, then we havethat and I'm doing research, I'm
learning as much as I can, I'mreading all of the time just
trying to, you know, learn andrecognize things that even I
wasn't paying attention to.
Before the diagnosis. So once wehad that, I was like, Okay, now,
I know what I, you know, I'm,I'm kind of dealing with and I
(06:13):
can kind of, now I can shift myfocus just directly to that
it's, you know, it's definitelyautism. And, and so some of the
things at that time that beganto be challenging is one where
we were right outside of Tulsa,but there was only one ABA
(06:35):
provider. And at the time, I wasworking for the tribe, and our
insurance wasn't covering it.
And Oklahoma insurance wasn'trequired to cover it at that
time. And so that really left usin a place where now we have
(06:55):
this diagnosis, and there's nota way for us to access treatment
for him. And so there were acouple of providers doing some
play therapy type models inTulsa. So we were taking him to
that we were taking him tospeech, occupational, just doing
(07:16):
anything that we could getaccess to, through our insurance
and even paying out of pocketfor some of the play therapy.
But, you know, as we're waitingfor, you know, the, to have an
insurance option, that that waskind of the path that we we had
to go on. And so I was workingat the tribe, like I mentioned,
(07:38):
and decided that I was going toapply for a federal position,
because in all of my research, Ifound out that federal insurance
plans if you're a federalemployee, that they did require
insurance companies to cover ABAtherapy. And so that's how I
ended up in the position whereI'm at Crystal with IHS and IHS
(08:04):
headquarters. And so from there,we had another door that opened
for him. And we were able to gethim into ABA therapy. A little
bit about I guess, or, you know,as he got older, and he, you
know, started to I would saywander more safety became like
(08:30):
just an increased risk for himconcern for me and my husband.
And so I just been reflecting onyou know, we had locks on our
doors that were high enoughwhere he couldn't get them. And
so it was like a separate lock,and we have locks on all of our
(08:50):
windows, because he loves to beoutside. He loves to be barefoot
still to this day, he wouldprefer to be outside who doesn't
wander now. But, you know, backthen he, he loved to wander. And
we had a couple of ponds aroundus. And I mean, lo and behold,
if you wanted to know where hewas at, you can guarantee that
(09:14):
if you didn't see him in yourfirst site that you needed to go
to the pond to because he wasprobably going to be standing
there looking, and he neverjumped in the pond. But he was
standing there looking everytime that we found him and it
was just the that was thescariest thing as a parent. And
so I want to definitely mentionthat because swimming is been
(09:40):
the biggest blessing for my son.
And it relieves so much stressfor me and anxiety for me when
he learned to swim. Um, he's 10Now, but he learned to swim when
he was seven. And so I want tomention that piece just because
I know that parents out therethat I know that They probably
had those same concerns. Andwhen you see it on the news that
(10:01):
is, you know, unfortunately,like, that's the, just the
horrific thing that is in thenews, when something does happen
to a child, but it is very truethat, you know, he always
migrated to water, and we haveLake houses, and he would do the
same thing at the lake. And wewould have to have someone
literally, with him 24/7 When wewere at the lake, before he
(10:27):
learned to swim, and if he evergot away, or you know, took off,
he was going to be running fullspeed ahead to the water. And so
there were there wasn't going tobe any stopping if he decided he
was going in. And so it just,it's, it's so scary, but just
(10:48):
such a big, you know, if theycan learn to swim and swimming
lessons and just getting them,you know, it's It relieves a lot
of risk, and increases thesafety. But back to the
treatment. I just want tomention, I wanted to mention
that piece. So when we startedABA therapy, of course, I was
(11:10):
reading like there's, you know,some negative reviews, there's
some positive reviews, andthere's mixed reviews, I guess,
about what ABA therapy canprovide for your son. And for
our son, I had read that it was,you know, evidence based, it's
the gold standard for autism.
And, you know, as apractitioner, you're always
(11:31):
looking for the best possible,you know, evidence based
practices for your yourpatients. And so, you know, I
really was open to ABA therapy,even with the mixed reviews
because of the research that hadbeen done. And I can say today
that it worked for my son. AndI'm thankful that the doors were
(11:55):
opened at the right time. Theyhelped us with potty training.
And he was around age five,which was a huge, huge help for
us. And they came to our houseand you know, gave us all kinds
(12:16):
of tips and tricks. And we spenta couple of days literally doing
nothing but documenting hisevery move. And by the end of
that week, we were on our way,and he was fully potty trained.
And I was jumping for joy atthat point because it was
another just huge, huge, huge,huge relief. At so his his ABA
(12:41):
therapy. He was in ABA for aboutfour years. And so he started to
transition out of ABA therapyduring the pandemic. And so he's
now going to school full timewhen he was doing ABA. There
(13:03):
were points during his therapythat he would do a half day at
school and then go to ABAtherapy. So it just really
depended on, you know, some dayshe would do full days at
therapy. Some days, we reallydid, you know, try to integrate
him as much as we could intopublic school. But now he does
spend full days at school. Andit's amazing, because in the
(13:27):
beginning, that was not apossibility for him to make it
even through a couple of hourswas a big deal. And so for him
to spend, you know, full days atschool now. He's in the fourth
grade, and, of course, has anIEP and, you know, that's
(13:50):
another thing that parents, youknow, we're their biggest
advocate, we have to read andresearch and know about all of
these things that our kiddosneed. But just we're our
biggest, or we are our child'sbiggest advocate and making sure
(14:12):
that they have, you know, thebest education options in front
of them. There's, unfortunatelyin Oklahoma, not a lot of
there's not a lot of autismschools. And I husband's from
Virginia. And, you know, that'sit's a very common thing in
(14:35):
Virginia that autism schools arein every, you know, probably in
every county, and there's countyfunding for it and it just it's
it's a lot different. And soit's unfortunate that Oklahoma
doesn't have more to offer inthat area. But I will say that
(14:56):
it's important to just make Makesure that you stay connected
with your local school, and thatyou're advocating that they're
doing all that they can toprovide your child with the best
educational options.
Crystal Hernandez (15:13):
So you mentioned a couple things, you
mentioned a couple things, Ijust want to circle on, you
know, super significant thingsthat you've said, you know, you
talked about just the, the, thetime that it took to get you
from, I have some concerns orsome questions about things I'm
seeing and feeling about my, mychild, to the point where you
(15:34):
actually get number one, thereferral to have an assessment,
but then the assessment. And sodo you see that, you know, now
in your new capacity, you know,working with with tribal
citizens and in other tribalnations? And do you see that
there's a massive gap amongproviders still? Do you see
(15:55):
those long waitlist still?
Miranda Carman (15:58):
I'm not super hands on with behavioral health,
but from what I have heard fromsome parents that have tried to
access services, that yes, thereare not a lot of providers,
there are not a lot of places torefer to, and I can't speak on
(16:19):
the pediatrician. And you know,if that has gotten better or
not, but I do believe thatthere's still a significant gap
in providers and providers beingable to get those assessments
done early. Because like, weboth know, it's, it's the most
(16:43):
important thing, and thenopening up that door, you know,
so that they can have access, ifthey, you know, are diagnosed,
that they can have access tothose critical services?
Crystal Hernandez (16:55):
Absolutely.
And, you know, even to take it alittle step further as yes, we
know, there's a huge demand andnot a whole lot of supply in
terms of those professionalsable and capable of diagnosing.
But there's even less of us thatare natives, who really
understand the culture, and whocan really serve in a different
way, there's even less. And sothat is just something I'm
(17:19):
hoping we'll see change in ourlifetime.
Miranda Carman (17:25):
Yes, that would be phenomenal. And I think this,
you know, is is one place tostart. And I know you're a huge
voice crystal for this work, andjust bringing, you know, the
awareness to this issue that wedo, we do need more people. And
I know that, you know, we'remoms, so of course, we're
(17:46):
invested in this, but it wouldbe nice to see even others
outside of, you know, the momnetwork that would join in this
fight so that we are able to getmore of our native providers on
board.
Crystal Hernandez (18:03):
Absolutely.
And then the other thing youmentioned, and I just really
want to make sure that weemphasize it is the elopement
and wandering and then theinclination towards water.
Because we know research, weknow the data that's published
is that our kiddos who areautistic who do elope or wander,
they do wander towards the waterand treat teaching swimming
(18:26):
lessons is vital, because theydrown at disproportionate
massively high and terriblerites. And so that is amazing
that you took that step becauseyou knew that he was drawn to
the water, you knew that he hedid have this tendency to want
to be out. And and you took thatstep. And so I hope that others
(18:48):
can kind of step in that samedirection. It saves lives.
Miranda Carman (18:55):
Absolutely. Yes, yes. And I spent a lot of time
with my son in the water. And wedidn't do any professional
swimming lessons. But any chancethat we had we were in the water
and just giving him everyopportunity to learn and just
working with him. And I wouldsay in the beginning, even he
(19:17):
wasn't a real fan of learning toswim even though he loved the
water and I think the resistanceto the water, it was stimulating
for him and he liked the feel ofit. But there was some there was
a time I guess whenever he wasgetting over, maybe a fear when
(19:39):
it came to learning to swimbecause it wasn't natural. But
once he you know started to kindof figure it out and learning to
tread water. He he took off andhe's I mean he is a phenomenal
swimmer. He's mastered thebackstroke, he can do the
backstroke better than Probablythe majority of people in my
(20:02):
family. So it's pretty amazing.
It's
Crystal Hernandez (20:04):
wonderful.
You know, the other thing I justwant to kind of talk about, that
you mentioned is you started inyour tribal network. And you
started through thepediatricians and clinics there.
And I've talked to, you know, somany people around different
states in tribal clinics, andand that work with children. And
I've asked some of them, youknow, do you screen? Are you
(20:24):
following the guide? Theguidance? Are you doing 18
months and 30 months andcontinual developmental?
Monitoring? Are you doing thosethings? And? And I wish that the
answer was overwhelmingly,absolutely. But it wasn't. And
so. So that's one thing, I hopewe see changes that, that folks
are being taught this, thatthey're given the resources to
(20:46):
be able to do screenings. Andthen if they are doing
screenings, that actually has atrigger to a referral. And then
and then that the referraldoesn't take nine months, one
year, two years, in some places,we're hearing up to two years of
a wait in order to get adiagnosis. And really, what
we're saying is, is thatdiagnosis, like you mentioned is
(21:07):
is the key that opens the door,so that you can get the services
and supports whatever that maybe, whatever that choice may be
for the family, or the need maybe for for the individual. But
it's definitely needed and goingthrough this whole process to
wait a year or two. It must beexcruciating. For some families,
I know I went through a weightas well for my own family. So
(21:27):
I'm just curious now that you'vestepped into a different role.
Do you think that there's arenewed or expanded focus on
developmental disabilityscreenings assessment services
within tribal nations thatyou've that you've been made
aware of? are part of well,
Miranda Carman (21:44):
I will say that we've recently at Muscogee,
Creek Nation received a HERSAgrant. That is, for it's the F
two F, and so we're going to itsHealth, Health Information
Center for families. And thenI'm also hoping that we can get
(22:08):
some support down the line to beable to expand that small pot of
money, but we do have enough forone FTE for one person to come
on board, and to solely focus onDevelopmental Disabilities,
which is the first time reallythat I know that this has
happened. So I do know on thetribal side, that there is a
(22:32):
focus on it. We did a communitysurvey not too long ago, that we
were just wanting to hear fromcitizens on what was their
concern coming out of thepandemic? And, you know, where
could we best support citizensand one of the responses that we
(22:53):
received was for special needschildren. And so that, you know,
really caught theadministration's eye, and
attention. And so we'vedefinitely focused in on that.
And, and like I said, we wereawarded, I think we're the first
tribe to be awarded tribalgovernment to be awarded the
(23:13):
HERSA, F to F health informationcenter grant, I believe the
South Central bear consortiumwas also awarded. And so I'm
just I'm really looking forwardto building on that. I know
that, you know, it's everylittle step, it seems like you
just keep kind of movingforward. But in those efforts, I
(23:36):
believe that we'll have a chanceto sit down with our health
partners, to sit down with ourpractitioners inside of our
clinics, and to really talkabout what those screeners are
and the importance of thosescreeners and making sure that
(23:56):
we're making those connectionsfor our families and our
communities. Thank
Crystal Hernandez (24:00):
you. And I have one last question. And then
I'll let Shawn ago, looking atyour own journey, what would you
say to your fellow tribalfamilies that are just starting
theirs?
Miranda Carman (24:10):
I would say would you say before diagnosis
or just any?
Crystal Hernandez (24:17):
I would honestly say looking at the
totality of your journey thatyou just described to us. What
would you tell somebody who wasjust starting their journey on
the autism journey in IndianCountry? What would you say?
Miranda Carman (24:32):
I would say that be be the best advocate that you
can for your child, no matterwhat you're trying to access and
know that your activism and yourparticipation is is going to
pave the road for somebody else.
And I think that's the mostimportant thing right now is
(24:55):
that it's it's new There's, youknow, still even at the federal
level, as you know, you know,it's still we're trying to
garner support for resources. SoI think it's just continuing to
have conversations when you can,in, in all facets, to make sure
that, you know, people areknowledgeable, and are aware of
(25:18):
the barriers that families arefacing, that people are aware of
some of the challenges inside ofour health system, I think just
being open about ourexperiences, parents, but
really, knowing that it's ajourney, it's a process. But
what it looks like right now, itwill not always look like that.
(25:44):
And so just sending a bigmessage of hope that stay, you
know, stay locked in, stayinvolved, even though I know
that it's tiring, it's, it's sotiring, your efforts and
everything that you put in, willpay off and you will start to
(26:07):
see tremendous results as timegoes on. And unfortunately,
that's kind of the thing in thebackground is time and, you
know, you're waiting and waitingto see some of those small
progressions and to see some ofthose small improvements. That
just means so much like pottytraining and swimming and, and
(26:27):
so just a real message of hopethat stay locked in and remain
hopeful because it will pay off.
Shauna Humphreys (26:38):
Yeah, I had about three questions. But
crystal, I think I'm just gotone. But I'll go ahead and ask
in case, there's something likejust specific, you wanted to say
about it, but I had the biggestpiece of advice for Native
families or parents that arenewly diagnosed, my
Miranda Carman (26:55):
reaction was different than my husband's
reaction. And I imagined that,you know, each parent will have
their own reaction to receivingthe diagnosis. And so I think,
you know, like I said before,that it's this, this is not the
(27:18):
end, it is really the beginningof your journey. And to know
that the way that it looks rightnow, is not the way that it will
look in, you know, it could be ayear, it could be two years,
you're going to see progress.
And just don't give up, don'tget discouraged that you've done
(27:40):
the best thing and getting yourchild the diagnosis, even though
it hurts tremendously. To knowthat your child is going to have
some of those challenges intheir life. But at the same
time, you've opened up a door,have resources that your child
(28:01):
now has available to them, andyou're doing the best that you
can in opening that door.
Shauna Humphreys (28:13):
Thank you.
Another question I had is solike, if you could wave a magic
wand. And looking at yourjourney from going in, you have
that perspective from travel tofederal? What What could that
travel network look like tosupport families with autism?
Crystal Hernandez (28:36):
I have that I have that magic wand. I have
that magic wand. Now we talkedwe talked I mean, we've talked
plenty and I know that for methe magic wand, I'll just go and
then you can just jump on and dofor me the magic wand is is a
lot of things. It's number one,the tribes working as a blanket
in a network. So if one tribehas some strengths, and has done
(29:00):
some great work and move thedial forward, lean in and build
together collectively. Andreally, that's the strength is
coming together and learningfrom one another but also take
the systems and the things thatyou've seen states and
government do learn from it anddo it do it better. And really
(29:20):
help the families through thisjourney, whatever that resource
or that need may be because thegaps are massive. And some
places even you know have biggergaps than others, but it's
really there's a lot of piecesto that magic wand question. So
let Miranda go.
Miranda Carman (29:37):
Yeah. So you kind of sparked just some
thoughts. I think, you know, thethe tribal relationship with the
federal government is a uniqueopportunity to tag on to some of
the efforts which I know crystalyou you've tapped into some of
that, but I look at some of thejust The conferences that happen
(30:01):
and the federal money that'spoured out into communities for
lots of different things. And I,I think that there's opportunity
for us to be in places and toshare information that in. So
I'm thinking maybe along thelines of like a task force or
(30:27):
something that brings usawareness, similar to how
they've kind of done a taskforce for, you know, family
violence and domestic violence,I believe there was a task force
on missing and murderedindigenous women. And so things
(30:50):
like that start to reallycirculate through Indian
country. But I love the idea ofcreating that network. And so
somehow, bringing theindividuals that are the
champions on the ground togetherin one place, that we're able to
stay connected and to sharethose experiences those
(31:16):
resources, because, you know, welearn from each other, you know,
all the time of, you know, well,in this state, maybe it's, you
know, a certain way, but, youknow, in another state, you
would have access to certainthings. So, there's just a lot
of differences, even from stateto state. And so we know that
(31:39):
our tribes are in every state,we have tribal members. And so
we have all of those differentscenarios that families are
facing. And so finding a way tobring those champions those
families together, and to sharethose experiences, share those
(32:00):
stories, and share what hasworked so that, you know, there
can be more services provided onthe ground and locally and that
that, you know, ultimately thatmore families are hopefully
getting services as early aspossible.
Crystal Hernandez (32:21):
I have one question I want to talk about
and, and we can talk about ittogether a few if you would,
like. You mentioned ABA andcontroversy, and I am very well
aware of the controversy. Youknow, I've had people write to
me and talk about ABA being akinto assimilation for our tribal
(32:42):
folks. And, and, of course, thenyou have, you know, all sorts of
other opinions about it bothdirections. And so I was just
curious if you wanted to sayanything about that we can tag
that through.
Miranda Carman (32:56):
I haven't heard that you probably talked to a
lot more people tonight.
Crystal Hernandez (33:03):
Just a few.
Miranda Carman (33:05):
Yeah. So I haven't heard that specifically.
That's interesting. That itwould be, I guess, compared in
that way to assimilation? I lookat it. As you know, these kids
need specialized services. And,you know, there's not a lot of,
(33:34):
of options. You know, there's afew, there's a few, that when
you're talking about that areactually research based that
have proven results. You know, Imean, anyone can come up with an
idea and, you know, say that,okay, yes, this is what you
should do, but things thatactually produce results. And so
(33:57):
that's what I would say is thatif, you know, if I'm a parent, I
want to know that the time thatI'm investing in the money that
I'm investing, is going toproduce results. And I know, you
know, every parent's probablygoing to look at it a little
differently. But I definitelythink it's more about this
(34:22):
treatment being something thathas proven to work because we do
not know everything aboutautism, we do not know. And so
not knowing means that you haveto go to what's shown to produce
results. And yeah, that wouldthat would be what I would say I
(34:44):
just I haven't had thatquestion. So I'm going to have
to think of that one a littlebit.
Crystal Hernandez (34:51):
No worries.
And so just for the podcastitself, ABA is applied
behavioral analysis in so forme, you No, I always look at it
because I hear both sides, youknow, sometimes it's
appropriate, sometimes it's not.
And I think just the the, thewideness of variety in need and
strength, and preference, I'malways one that I allow that
(35:15):
preference to come in. And youknow, if this works for your
family and for you, and it's,it's needed, you know, whatever
that treatment is, I believethat they should have access to
it. And so it's all for me aboutchoice and access and need. And
so Absolutely, thank you forsharing that. All right, is
(35:36):
there anything Miranda that wehave not asked you? Or that you
feel
Shauna Humphreys (35:39):
think I just have one last question. And it
may take a few minutes for youto think on it too. But you, you
mentioned that, you know, momsare kind of leading this this
fight. So what would be yourplea or kind of your pep talk to
someone or to our audience? Toget them to join the fight? Like
(36:00):
how could How could they help orwe help and joining in this
fight?
Miranda Carman (36:06):
I think awareness and people taking the
time to to learn about autism,if you have someone in your
family that you know, you know,has a child, you know, have a
conversation. You know, learnwhat you can be open to it.
(36:26):
Don't be afraid of it. It's not,you know, it's something that we
need to be afraid of it's, youknow, something that I think
that people just they reallyneed to be open to gaining more
(36:46):
awareness. And so I would just,you know, ask that people are
not just sorry, that people arenot judgmental, in what they see
if they have questions about abehavior that they see. Ask
about it. And you know, if youare aware of a child, and maybe
(37:10):
someone else is, you know,making a comment, or they're,
you know, asking questions aboutbehaviors out in public, and
what is that about? Educating ifyou're aware, those people if
you have that opportunity, andwhat you've learned about
autism, because there'sdefinitely a spectrum, but
(37:32):
that's something that I've seenjust in going out in public. We
go to football games, you know,all the time, though. I think
it's just, it's important toexplain those things to be open.
And then for, you know, otherson the other side to be willing
to to learn and then have aninterest in, you know, just
(37:56):
really joining us in this effortto bring awareness to these
issues, because they're realissues.
Crystal Hernandez (38:06):
Well, thank you, Miranda, for sharing your
story. We appreciate it, it andI can speak for myself, and I'm
sure Shauna feels the same way.
It was wonderful to have you andwe definitely appreciate the
work that you're doing.
Miranda Carman (38:21):
Well, I appreciate the invitation. I am
glad to have joined as well. AndI look forward to connecting in,
you know, however I can with ifit's moms, if it's parents that
are just interested if peoplewant to know more, I think
(38:41):
they'll have three individualshere that could definitely
provide information crystal Iknow is a wonderful resource and
can get you connected to prettymuch anything that you need. So
I appreciate it, Crystal andeverything that you've shared
(39:01):
with me. So thank you again,
Crystal Hernandez (39:03):
thank you.
Native proverb, we will be knownforever by the tracks we leave
on others. Native Americans havethe highest rate of disability
among all other groups. We havecompounded traumas, we have been
(39:26):
stripped of land, culture andlives. We have continued
barriers to care with equitableservice. There continues to be a
true lack of inclusion incrafting widespread policies,
programs, funding and systems.
When we know better we do betterand everyone deserves to have
compassionate understanding andbe their most authentic self.
Shauna Humphreys (39:59):
If you are someone you know I was
experiencing a mental healthcrisis called the 988 suicide
and crisis lifeline, whichprovides confidential 24/7
support by dialing 988.
Crystal Hernandez (40:09):
Join us next time for a discussion of
developmental disabilities andhear stories from our wonderful
guest. So black brothers podcastis a podcast that will occur on
a monthly basis. We hope thatyou will listen subscribe and
follow us on social media. Thankyou to Cherokee National
Treasure Tommy Wildcat for theuse of your flute music on this
(40:30):
podcast.
Shauna Humphreys (40:31):
I want to thank Lukas Fraser and the boys
for letting us use theirdrumming music. Please subscribe
to black feathers podcast. Youcan find us wherever podcasts
are found.
Crystal Hernandez (40:41):
We would love to hear from you and invite you
to submit your stories andquestions. Until next time.
Shauna Humphreys (40:46):
Thank you for joining us on this month's
journey. Remember, none of uswalk this Alone Together we are
stronger and it is the rootsthat bind us. Follow us on black
feathers.org
Popular Podcasts
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com
24/7 News: The Latest
The latest news in 4 minutes updated every hour, every day.
Therapy Gecko
An unlicensed lizard psychologist travels the universe talking to strangers about absolutely nothing. TO CALL THE GECKO: follow me on https://www.twitch.tv/lyleforever to get a notification for when I am taking calls. I am usually live Mondays, Wednesdays, and Fridays but lately a lot of other times too. I am a gecko.