Hope McPheeters: The Challenges and Triumphs of an Autism Advocate Mom

Welcome to Why Not Me the World? Podcast hosted by
Tony Mantor, broadcasting from Music City, USA, Nashville, Tennessee. Join
us as our guests tell us their stories. Some will
make you laugh, some will make you cry. Real life
people who will inspire and show that you are not
alone in this world. Hopefully you'll gain more awareness, acceptance,
and a better understanding for autism around the world. Hi,
I'm Tony Mantor. Welcome to Why Not Me the World.
Today's guest has two children that are autistic. She started
a charity for autism and has so much information to
give us. Joining us is Hope mc Peters. Thanks for
joining us.
Hope, Well, I appreciate you having me.
Oh, it's my pleasure. So I understand that you have
two children that are autistic, if you would give us
a little information about them.
Ellen, she is eighteen now, and Luke he's fourteen. When
Ella was two, we noticed something different and we moved
to Columbia, Missouri, because they were opening an autism center,
the Thompson Center for Autism at the University of Missouri.
Both my husband and I had gone to the University
of Missouri, so we had talked to our pediatrician, and
he mentioned something about autism testing because she wasn't talking
at age two, really wasn't imitating us, not doing too
many like doing a little bit of echolabia, like echoing things,
but really not conversation, no spontaneous conversation. And so they
asked if we might want to go see the Thompson's's
so a developmental pediatrician at the Thompson Center. So and
it was brand new at the time. It was like
it opened in two thousand and six. And this was
when Ell was too So we moved, did we My
husband was able to get a job because we and
I was able to stay home with her if we
moved to Columbia, And then we were going to have
her tested because we kind of suspected something too. Almost
started doing the research, and so she was diagnosed at
the age of two at the Thompson Center. And then
Luke and we got really involved with them and started
doing therapy. And then I got pregnant four years later,
and the Thompson Center went ahead and put Luke into
a siblings study because at that time they were seeing
they were now seeing more families get double double, triple diagnosies,
So they were looking at a genetic component of autism
because we were seeing so many So that was so
Luke was diagnosed when he was sixteen months at the
Thompson Center and then from there, I just just my
family immersed themselves in the autistic community, the autism world that,
if you will, and we've been going ever since.
So when Ella was diagnosed as autistic, autism wasn't as
predominant as it is today and people didn't know about it.
So what was your approach and how did you feel
when you got that diagnosis? What went through your mind
at that point?
Well, I mean, I will remember the date to the day.
It was February sixteenth, two thousand and six. She had
just literally just turned two in December, and I I
just I just started this huge search of knowledge because
I didn't really know anything about it. She was a girl.
At the time. It was still kind of a void
predominant disorder they were there were autism speaks at that time.
Was even like three out of four boys get autism,
and so I was like, how in the world did
my one out of four be a girl like my
girl get diagnosed with autism? And so I just didn't
know a whole lot about it. So we worked really
hard at with the Top Center. I went to all
the parent trainings. You know. We were very fortunate that
we jumped on that. We just made the decision as
a family that moved to Columbia and and and be
in a community that was studying.
Okay, so Ella's diagnosed, you start doing your research about autism.
I've spoken with many people that question themselves, did I
do anything wrong? Could I change anything I'd done during
the pregnancy? Did anything like that go through your mind
at the time that you could have done something different?
In the very beginning, I yeah, I was like, what
could I have done differently? I don't understand. We didn't
really have anything that we thought in our family, like
in our family history that looked like this. But but
then as I started to like kind of get to
know my kid, I mean, I was just like, this
is just this wasn't my fault. I mean, you know,
like I have a lot of a lot of moms,
you know, do probably go through that grieving process like
what did I do? Why am I you know, why
are we going through this? You know? And I've just
kind of always a positive person. So I just had
to say, you know what it is, what it is,
and you know, like now all I need to do
is focus on how I can help my child get
to Absolutely.
I asked this question because I think that other women
that may be hearing this podcast sometimes need to hear
answers just like you gave.
Yeah. I mean, there's been just so many stuff and
there still is. It's kind of inundated on like on
the web, Sondre. In the web and on social media,
you see these like class action suits that are like
did you take tail it all when you were pregnant
and autism or you know, like all these kind of
certain things. There was a big push with like the vaccines,
you know, like I just I just had to throw
that all away. And then when I had my son,
you know, I mean it all came kind of came
full circle because my son was there, you know, with
autism earlier than Ella was diagnosed with autism. And I
mean I knew the signs right away his pregnancy. I didn't.
I did everything different during his pregnancy. I was like,
you know, stayed away from certain things that like people
were you know, insinuating, oh this might be a cause
of autism. You know, I did everything different. I didn't
vaccinate him right off of that because there was there's really,
you know, no reason to vaccinate him with he B
and its first shot. But I don't believe that that's cause.
But I just said, I'm going to space them out
and see if that makes a difference. And it didn't.
It didn't make any difference. And you know, Ella is
my you know, my high eror functioning. I try to
stay away from khole labels, but like high air functioning.
She's verbal. She just graduated from high school. She walked
across that stage in battered diploma, you know. And my
son is nonverbal still, he's fourteen. He has he has
a lot of sensory issues and he communicated to the
right back. So they're just both very different on the spectrum.
But you know, I wouldn't go back and change anything
that I did. And sometimes I think God gave me
Las so I could be a better mom.
For lou So Luke's nonverbal. Did Ella go through that
nonverbal stage? And having two autics of children, what were
the differences in them growing up that you saw?
Well, I mean Ellis started talking, so she was nonverbal
until she was about four and a half or five,
we started ABA therapy and speech therapy, and we always
knew Ella was smart. She was doing she was doing stuff.
She was spelling at age two and a half. She
would see she would see words on blues clues, you know,
or like a cartoon. She would you know, talk good
and spelling and she we had these bathtiles and she
would spell those words on the floor. And so she
was really you know, like we knew she was. She
was reading, We knew she was. And then we figured
language would come.
So did language come the way that you was hoping
that it would come?
They did come. They I mean lots of therapy. We
did lots of ABA and speech therapy with her. But
it was kind of amazing because she did. She was
one of those kids that went from I have a
video of her that she said. The first word she
said was bubble because we were in therapy and we
would ully bubbles and and I'm in the video with
her because I was I was always trying to like
be trained by the therapist so I can just continue
to help her at home. And so I would I
held the bubble wand up to my mouth and I
wouldn't blow it until she said bubble.
So did you finally get her to say the word?
We had sat? I mean there is times that we
sat for a long time and if she didn't say it,
we would have to kind of give up, or we'd
make her sign it, or we would she We used
like pecks where she would like point to a picture
if that's what she wanted. And so then the first
time she said it, she said bubble, and I just
blew the heck out of the bubbles. And then later
on we have a video over we continued with therapy.
One time we same thing like we had been swimming
at the pool and I'd walked her down home because
we had a neigh broad pool and I walked her
down home and stroller and I strolled her in and
she literally this was after the bubble incident, but she
literally was like more pool please, And I had to
honor it.
I had to turn that stroller around and go back
to the wall because I had just had to honor
you know, her voice and so and so that was
in them and then she and then.
The third video that we have, we're talking She's like, Mom,
blow me bubbles please. So her language went from like
words to sentences in a matter of months, you know.
And then we just realized how smart she was and
artistic and she's she's a whiz at math and so
those were kind of you know, the things that we
focused on with with her.
Oh, that's great that she turned around. You saw such
a change. So what was the difference between her and Luke?
Now? With Luke, we heard a lot of babble from Lune,
which we didn't hear from Ella, so it was interesting.
And he he went about, let's see, till kindergarten, he
went and he used a text system. He did a
picture system where he would communicate with picking pictures out
and showing where he wanted and why not. He did
pretty good about that, and that's what we got him
an iPad, and then we realized he could read because
he could read site words on the iPad, and so
now he uses a communication device for output.
So his communication now is primarily iPad. Does he verbalize
it all?
Yeah, he can communicate pretty well at dirt iPad he does.
He does. He is able to verbalize some of it,
like he is able if he touches for the able,
like if he touches like chicken nuggets, So he like,
I want chicken nuggets. He can he can actually do
the whole sentence. It's it's an icon and it's like
and words site words like he can say I want
chicken nuggets, and so we know he's reading, we know
he's recognizing those words, and then he can output like
he would say like nugget, canna repeat some words after
he's output in it.
Well, okay, that's pretty interesting. So now what do you
see for Eli's future?
Well, she has joined, so that's kind of right. Mission
now as my teens, as my kids have grown, we
started very early on with advocating for early intervention and
you know, and throughout this process now we're advocating for
more services for teens and adults because we have found
that in latches and well, the little guys get a
lot of services.
So it's around twenty one that most age out for
some of these services.
Is that correct, Well, not all, like a lot of
our maje out at eighteen of school, Like Ella aged
out at eighteen because she was that and I said,
so my son, he's in a self contained classroom and
more essential skills classroom and so he will have the
right to education until twenty one. Ella graduated, but she
is going to the transition program for one year, which
is employment skills, and she'll be working as an intern
at Embassy Suites and they'll they're teaching her all of
the ropes of all the jobs of the hotel. And
she does that with seven and your kids that are
on the autism spectrum that she's been with in school.
So the big issue is finding programs that can help
them along. Is that tough to find some of these programs.
There's not a lot of programs out there like that,
and so and then after that, you know, it's kind
of it's up in the air. So that's my mission.
Now I have since left the classroom. I was a
French teacher until this year, and now I've left the
classroom and I'm looking for autism support now behavior all services,
and I'm working on getting more programs for teenagers.
Now before autism support, now, you actually had a charity
of your own, is that correct?
I did. That's thirteen twelve years ago. Twelve years ago
we started Ellis Hope for Autums and and we're still
running that. We did that in two thousand and six. No,
we did that in two thousand. We started in two
thousand and seven, but we really grew it and we
were able to establish the non profit in two thousand
and eleven. And we really advocated because between the years
of two thousand six in two thousand, probably about that
ten two than ten, insurance didn't cover a lot of
therapies for autism. Yeah, so we did that so because
we could help with the cost, We helped parents with
the cost of therapies because a lot of times if
the insurance wasn't covering it, people could not afford it.
So we raised monny for area local families. We also
raised advocacy for them, and then we've then we helped
UH fight for the bill, the mandate and Missouri has
a mandate where now insurances have to cover autism autism therapies.
So that's really good that you was on the front
end of this, UH, so that you could help others
and really build more awareness for autism.
We stayed really close with the Tomson Centers, so you know,
they they were the groundwork with it, with the with
the legislation with Governor Nixon. But we helped as parents,
we helped, we helped tell them what we needed. We needed. Yeah,
So we were a group of parents that went down
to Jeff Verson Study and talked to the legislation that
we need speech, we need O T, we need a
b A, you know, like these are the things that
we need.
That's one thing I hear from everybody I speak with
is that there is a need for the government to
get involved and help autistic families deal with things that
they have to deal with with insurances and and just
varied things for for helping their children. So do you
ever see that coming on a national level?
Oh? I wish it did. We were hoping that I would.
We were, I mean, enough states are doing it, I mean,
but it would be really nice to be a federal mandate.
We write letters all the time for you know, certain
funding through you know, Medicaid and whatnot. So we try,
but it would take a special, special someone to get
a federal one done.
So tell me a little bit about autism support now
that you're working on and what you're doing that.
Doesn't support now as an a BA Behavioral Therapy c MINIC.
But it actually my husband and I actually co founded
it under our charity and now it's not it's not
a nonprofit, but we have nine clinics across the state
of Missouri. We just want to help as many people
as possible, as meeting kids and teens as possible, and
so I have taken on the role of director of
Community Engagement, and so I'm trying to and and also
a parent, kind of a parent advocate because I do
all the intake for parents, and so I'm giving in resources.
I just talked to a parent today that lives in
Saint Louis and I used to live in Saint Louis
and her son was diagnosed and we're going to get
him into one of our clinics. But I was telling
you about all the resources that I used to use
in Saint Louis, and she was just like, thank you
so much. She's like, you know, I this is the
best conversation I've had since his diagnosis, because I just
don't know what I'm doing.
It's really tough for those just starting out and finding
that their sons or daughters are autistic.
I'm sure it's a marathon. It's not a spread. You know,
like you don't have to know everything at once, and
you know, like she's I said, call me anytime with
a question, and I do my best to answer it
because I've been doing this for I've been I've been
advocating for my kids for you know, sixteen years. I
love it's diagnostic too, So I just so I'm trying
to I'm trying to incorporate that into into the job.
What's the toughest part of the job. I know there's
a lot of tough parts, but you're trying to help people.
And what's the number one thing that you see on
the list.
There's always a wait list. So many people. I mean,
I mean, like so many people want the help, and
it's just we can't. We can't. We can't provide the
help fast enough. And I mean, I I my heart sinks.
What I'm like, we have like a two to four
month wait list, maybe longer. Wow, my heart sinks for
these parents. And that's a hurdle probably across the board
with ABA, with speech, with OT, with developmental pediatricians, even
with DIAGNOSISMS. There there are parents out there way for
a diagnosis and they can't be seen or the clinic
for six to twelve words. And without a diagnosis, you
just can't get services. There's just not a lot of resources.
Up there, So what do you do in that case?
I've been trying to give our parents that we have
resources that I didn't have at the time that's been
developed so well in the last sixteen years, you know,
like because because parents like us are the ones fighting
war it, so you know, I look for the online
resources we you know, like there's toolkits out there. I'm like, parents,
you just need to get on every wait list you can,
and it doesn't matter if it's ours or it's been
you know, neighboring. I try to refer people to places
that you know that maybe they can get in faster.
It's just I know, the parents want to help now,
and you just, you know, like it breaks my heart
and we just can't provide it.
And that's really sad because so many people need to help,
and there's so many people out there that really want
to help, and the people just don't know what to do.
It's it's tough.
For everybody, and there's a lot of hard work and
people doing it, but it's just really hard to find
sometimes and a lot of you know, a lot of states,
more rule areas, they're even and you know, kind of
worse conditions because you know, there's just not enough resources
in small towns, especially around our area. Like we're in
Kansas City. We're in a free, you know, big city,
and so we have some we have lots of area resources,
but we put a clinic in Plat City, which is
a small, you know, small town, and there's just it's limited.
And you know that's those are the longer wait lists.
Okay, So now let's switch to the school systems. How
has that changed and how did it work for you
with Ella and your son.
I think everybody's experience is different. I mean, my kidos
have a great school experience. They were both on individualized
educational plans. They had a team of people that were
and still are, you know, I call them Team Luke
and Team Ela. I you know, I was pretty adamant
about what I wanted into their ips, into their individualized
education plans, and so I was kind of that mom.
I hear from parents that some parents struggle just depending
on the school district or what the needs are, because
sometimes that needs can't be mad at the school, and
that's a problem, you know, like that's a problem. And
sometimes schools are staffed or equipped enough for some levels
of autism. So sometimes they have to go for some
outside help.
Did your kids have any any issues like in high
school like some do. How was their experien was there?
High School's pretty good? But to be fair, I was
a high school teacher at the school, as I mean,
there are a lot of parents get you know, get
that that inside kind of connection. I was very but
we did have a few incidences, but I tried to
use those those kind of incidents it's more of an
education We deal with some anxiety. And that was really
like kind of the the heart of the behaviors at school.
Like she would get anxious and I don't know if
kids would bully her, but they didn't understand her behavior,
so you know, I mean they would just kind of
not you know, not get at her space and like
and and and they kind of back off. And whereas
at and she wasn't meaning to be that way. She's
you know, they you know, like they thought she was
kind of rude at one point, Like a couple of
kids thought she was rude, you know. And I kind
of used that as an education sho like platform to
be like, well, that's just kind of because she's a
very abrupt person, like she she'll just say what she thinks,
because there's no filter with autism sometimes, so I kind
of educated them on that she yes, and she's autistic.
And then you know, like most of the kids that
at Leasta that I saw her interacts with art were
really nice. But I know it goes on.
So how did you find the school system for Luke?
Luke is a little bit different. He kind of is
protected in his like a essential skills self contained classroom.
We don't worry about him going to the high school.
But and he had a fabulous middle school experience, but
it was because of the teacher, and so we were
really blessed. And so you know, like everybody's spend, I know,
everybody's experience is different. And I know there's probably a
lot of people out there listening and are like we
did not have that experience, you know, and and and
I feel for them because I know that I have
been very lucky.
Now, I've talked with some parents that tell me that
their kids tend to go into what I like to
call their comfort zme and that could be their room
or wherever they go to just be by themselves. Do
you have that issue at all?
If Ella could be by herself, most of the time
she probably would be perfectly happy, but I don't let
her even as it's interacting with me or Dad or
you know, like we go on a walk or whatever,
and so all I mean basically especially now when she's
an adult. She is an adult and so and then
so you know, social activities for her are you know,
we've we've sought them out. We are in a program
at ku MED that's called Girls' Night Out and it's
specifically for girls on the autism spectrum. And they do
community events and they do and she does classes with them,
and so like they just went to the zoo last
week and you know, spent you know, about fifteen of
them spent the whole day at the Kansas City Zoo
together and they were socializing. And they have people that
provide you know, provide some instruction or some you know,
social skills with them.
Now we've evolved into a world of computers. So that's
a huge thing now because everybody communicates and socializes on that.
Has Ella done a lot in computers. Do you see
that helping her out as well?
She lest computers. She likes to make videos. She's she's
actually like a YouTuber. I don't understand it at all.
I can relate to that.
They're very into their videos and she she creates videos
on going anime or yan and she puts them up
on YouTube, and you know what, it's actually been really great.
She has a whole community on YouTube.
Awesome.
They interact, they interacting comment, and to me, that's not isolating,
that's actually communicating with people. So find that strength. I mean,
because I was like, okay, well, as long as you're
safe online, you know, like, and I can keep an
eye on it, you know, because online is kind of
scary for kiddos because they're they're trusting, but but I
kind of keep an eye on it. But I realized
that she's socializing and she has to post to Instagram
and people comment, and you know, like, I'm like, that's socialization,
that's not isolation. You know. So nowadays, especially since COVID,
I feel like we were all online, you know, so
so really like that that is kind of her, you know,
like kind of a way to to for me to
not to not think that she's isolating.
Yeah, that's that's just so great.
You know.
This has been just so great because we we've talked
about so many different subjects and the school system and everything,
and it's just too bad that we can't actually get
more integration and teach more understanding in schools to those
that aren't autistic to understand those that are.
Yeah, and I love that because I think there's like
an old say, we teach our kids to interact with
typical kids, but why are we teaching the typical kids
how to interact with our kids? So true, you know,
we have to blend our kids into that world, but
you know, it would be nice to see more change
that for inclusion and more you know, more typical people,
you know, coming into our world.
Yes, absolutely, I've got to say that this has been
a tremendous conversation. The biggest thing that I've really enjoyed
about talking to you is the fact that you have
so much knowledge because you're part of not only the
autistic community and having two children that are autistic, but
you also have a charity and you help others as well.
So I really want to take and bring that into
perspective and ending this and telling about the challenges and
the things that you tell people when you when they
first find out they have a child is autistic.
Yeah, it's pretty overwhelming. Back this week, I've talked to
several several moms again, just several moms that just got diagnosis,
like two or three year old kiddos, And and what
I do tell em I do say, I say, it's
a marathon and it's not a sprint. You do not
have to know everything or do everything now. You can,
you know, like decide on what if you think a
is going to be something that you want, get on
some wait lists, look into speech, look into OT, you know.
And then I do send. I have several resources that
I send them. And then I just say, find a
support group. There's a bunch of support groups online, like
on Facebook, on social media. Honestly, I joined a Kansas
City Autism spat Facebook group when when in twenty eleven,
that's what I got on Facebook, and you know, they
were already for me then and I got on there,
I don't know, maybe not two eleven. In a couple
of years after that, and I interacted with other moms
and I was like talking, we were talking about we
just shared all of our experiences and and that for me,
that has been why I have actually like kept the
way like my normal became.
The autism community just great information. So in ending this,
I think I have one more question. Do you have
any outgoing words of wisdom for all the people that
are listening today?
Just don't get about BAM. I mean just I just
you know, like I just, it is a totally different world.
You know, find their strength, find their you know, be
their voice if they don't have long you know it,
times do get tough. It's really hard, I know, but
you know, I just we just made a pack that
we would never give up on our kids and we
would always continue to make sure that they are happy
and healthy. And they are happy and healthy, you know,
like I mean, they just you know, they just need
a little extra support and you know you'll find it
out there. I mean, you just have you just just
for it absolutely.
And I want to thank you again for coming on
because you've given so much solid, good information for people
to listen to, and I feel like we only touched
on some of the subjects that you could really help
people on. So thanks again for coming on.
Well, I again thank you for having me word to
listening and it's going really fun.
Yes, I've truly enjoyed it with my pleasure, and thanks
again thanks for taking the time out of your busy
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