Jennifer McGee: Silent voices, Loud Love and advocating for her autistic nephew

Welcome to Why Not Me? Embracing Autism and Mental Health Worldwide?
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Tune in, be inspired, and join us in transforming the
world one story at a time. Hi, I'm Tony Mantur.
Welcome to Why Not Me? Embracing Autism and Mental Health Worldwide.
Joining us today is Jennifer McGee. She's a visual artist
of over twenty five years who travels the country promoting
her business Body Pizazz, to various events. Now, her greatest
masterpiece is her autistic nephew, Isaiah, whom she welcomed into
her life as his devoted guardian at age fifteen. This
led to her book Is He Can't Talk, which follows
young Izzy, a non verbal boy using sign language, pictures
and a speech pad to connect in a heartfelt way.
She will also talk about her upcoming sequel is He
Can't Talk But He Can Make Friends, which celebrates inclusion
and the magic of connection. Today, she shares her journey
from artists to advocate, inspired by Isaiah, which has set
her on a path to amplify the neurodiverse voices moving
art and heal and unite. So before we dive into
our episode, we'll be back with an uninterrupted show right
after a word from our sponsors. Thanks for coming on.
Well, I'm so excited. I'm excited to be here with
you and to talk about autism and inclusive art house.
Yeah, so if you would tell us how it all started.
So in twenty twenty, my husband and I adopted our
nephew who was fifteen at the time. He is non speaking,
completely nonverbal, and he had not had any therapy at all.
He needed a home and we you know, we love him,
but we had no idea like what to do with autism,
what it even really entailed. So twenty twenty all of
our events were shut down. I said, I do face painting,
and so we just really took that time to learn
about autism and look for resources for Isaiah, and there's
just not a lot. So that's really how it started
us learning and seeing a need and trying to educate ourselves.
In another piece that makes total sense. Did you know
he was autistic before you adopted him?
For sure? But we really didn't know what that meant.
I mean, you know, of course, like we saw him
like at birthday parties and we spent time with him,
but not at the level of Okay, we have to
care for him and what does that really mean?
Yeah? Absolutely, I think this is really interesting. This is
a completely different scenario. Most parents find out that their
children are autistic at a very young age. Now you
have an autistic nephew that's fifteen and you're just starting
to find out what autism is all about. I think
many people would admire you for the road that you
took with this. By doing this, What path did you
see yourself going down? What was you learning?
So really that I don't know anything and I need
to just continue to learn. And so I wrote a
children's book. As I was understanding Isaiah, I wanted other
people to understand him, and so the book is called
I Is He Can't In the book, we really discussed
the communication techniques that we use, such as sign language,
a speech pad, picture card. Pecks is really big in
our life. But then also as an artist, I feel
the need to create art that is inclusive of people
with autism and also people with mental health issues and
other disabilities.
What were some of the first things that you learned
you adopted him, he's autistic, nonverbal? What path did you take?
What did you find initially you were facing the big unknown?
How did you navigate through that? What were the first
steps that you took.
So the first thing we knew that Isaiah I mean
he's significantly developmentally delayed. He could not open a water bottle.
I mean, he's level three as profound autism, and so
to us, we didn't really see it as autism. It
was just Isaiah. Isaiah is different. But it's when we
started seeking therapies that it was explained that he has autism.
So we were very fortunate to get speech therapy and
occupational therapy and then eventually find an ABA therapy that
would take him because he's older. A lot of therapists
want smaller kids or they really feel like that once
they're fifteen, they're they're too far gone. And then once
he started ABA, the BCBA started to teach us how
to teach him and how to set up his routine
and use communication and just all of the things to
really start understanding his behaviors. And that was a game changer.
Okay, so that was how long ago?
So that was twenty twenty. So we've had him for
five years.
Okay, five years. Now, what are some of the changes
you've seen in these past five years? Oh wow.
So when we first got him, even before, like we
he came to live with us, we went on a
few like small trips, and we would go to dinner
and we would may have to leave the restaurant because
he would start throwing his glass across the restaurant or
running all through the restaurant. When he first came to
live with us, breaking a lot of TVs, just aggressive
behavior that we learn is communication. He really had zero
functional communication, so not being able to tell us that,
you know, my stomach is hurting, or you know, I
want lemonade not tea, you know, just little things like that.
So once we started giving him these avenues to communicate
and along with the other ABA techniques, we really started
to see significant change in his behavior.
You said at times he got aggressive, that could be meltdowns,
that could be other various things. Have you seen a
change in that Is that more under control now with
everything that you've been doing.
Oh yeah, And for Isaiah, he's normally very gentle anyway,
So even at his worst, the meltdowns weren't as significant
as I know a lot of other families have to
deal with. But for sure, we were at a point
where we were when we first got in Okay, we
didn't think we would be able to travel for work anymore.
Like today, he flies, he travels with us, actually a
good bit. He's not with us right now, but he
travels a good bit. That's a complete, you know, change
for him.
So tell me a little bit about how he travels
with you and what that looks like.
I really want to reiterate how well he travels. And
for our lifestyle, we really thought we were going to
have to give up our career. I've been doing events
for over twenty years. We just didn't think that we
were going to be able to do it. Or working
with him and introducing him to travel and doing it slowly,
he really enjoys it. We've taken him to Disney World,
and that's how we we know he loves roller coasters,
trying those different things. And I feel that is something
that our family really can help other people with is
don't be scared to go into the community. You do
have to navigate it with safety, of course, but it's
your community too, and Isaiah has every right to live
his best life as anybody else, and we don't have
to keep him hidden away. And I think there's a
lot of families that feel like they're embarrassed or they're
worried about what their loved one is going to do.
Do it anyway. The world needs to see you. This
is your living, Your life is your advocacy. So I
think that's really really important. And little by little again
he flies. We never thought we'd be able to take
him on a plane. Slowly, we went to the airport
several different times, getting him familiar with the things. Delta
has a wonderful program and using those different things. The
TSA has a special line that you can go through.
Those accommodations make it possible for Isaiah to fly and
enjoy life.
Have you had any issues with people they didn't understand
anything about autism? And for lack of a better word,
they would just rude because of it.
Very little. We did have an issue one time, and
I think we were in Florida, I don't remember. We
were somewhere and Isaiah loves the hot tub, so we
try to stay in hotels and resorts that have hot tubs.
So we get to the hot tub and there was
a young man in his mid thirties. His girlfriend started
to leave and he was in the hot tub and
he said, don't leave me, or don't leave me. He
made some comment like that. We just ignored it. Isaiah
got in the hot tub, he moved a little close
to the guy. Not he didn't touch him. I mean,
he wasn't in his bubble. He jumped out of that
hot tub like he was going to get pooties or
like he was going to catch autism. It was really disgusting.
That was horrible. But most of the time, and I
would say over ninety five percent of the time, people
are really kind and accommodating. So it's very encouraging to see.
And that's why I say people need to get out.
Don't be scared to get out.
Yeah, that's great. Now, is he still non verbal only?
Recently, we've started to hear a few syllables MA, that's
his most we got. He hums a lot, but no
speech at all.
Okay, now he's twenty correct.
Yes, yes, he's twenty.
So what do you see in the next few years
for him. You're continuing do things, You're continuing to help
him evolve. What do you see coming down the path
for him in the future.
Well, with the syllables that we've heard, we're really hoping
that we will get some speech. I mean, we would
be thrilled if we even got a few words. That
would be phenomenal. But I just enjoy seeing Isaiah embracing
his own life. For example, we know that he loves music.
We were in Florida walking along the beach and there
was a restaurant that had a live band. He went
right in, sat down, and he didn't want to leave,
and you could just see on his face how much
he was enjoying the music and so discovering these things
that he likes. It's very rewarding for us, and it
also gives us the path to put more things like
that in his day.
Now that you are five years into this, things are
starting to work out more. Did you have any reservations
when you first started this because you was getting overwhelmed
by the autism and not having a grasp on what
it was.
Yes, Oh for sure. I mean I've probably had a
couple of milldowns, and actually I know I did, just crying,
just feeling hopeless and we wouldn't be able to take
care of him, and how scary that is for him
and also for us. It's very emotional, you know.
And yeah, yes, I hear that all the time. That's
a very natural response. How has it changed from the
time that he first came to live with you to
now five years later.
Well, it's definitely more of a connection. Like I know
that he enjoys our company. There have been times that
he's actually come and sat down beside me. He really
is connected to my husband Brandon, and there have even
been times that he's like laid his head on his shoulder.
In the beginning and all throughout his life. I was
in the room when he was born, so I've always
been around Isaiah, but we've never had any kind of
connection like that. He's never had a and we didn't
understand autism. We thought he was more comfortable with us
being far away from him. So to see him now,
you know, enjoying our company and of course he still
likes his space. But yeah, but just knowing and having
that confidence and that he does want affection and closeness.
He will even give us a hug we asked for
for a hug.
Yeah, that's great. That actually was one of my next questions,
texture and touching. Does he have an issue with either
one of them?
So he'll he'll hug us. That's it, you know, and
then he wants to go and you know, sit down
in his spot. Not so much texture. I mean, he's
pretty tolerant of most things. Yeah, but he definitely likes
his space.
Yeah, I get that completely. What did his school look like?
Was it private? Was it public? What happens there?
So he was in school, he was in public school,
but his level of communication and ability, we were recommended
that he get full time ABA at home so that
he could develop his daily living. That really changed everything
for our family and for Isaiah. They started working with
him on his morning routine, helping him learn to shower,
and us how to help him shower and how to
build on those skills and brushing teeth, I mean everything,
even setting the table unloading the dishwasher. I never thought
that those were skills that he would be able to do.
So we know, before the ABA, we didn't even try
to implement chores or him you know, helping bring in groceries,
those type of things.
Okay, so when you go to school, you go through
the grades, you graduate. Now, how has his journey been
from school to ABA therapy and doing everything he's being taught.
How have you seen him change on that? And most important,
how is he doing now?
So when we don't work on a skill all the time,
there's some regression, but very little. We've really I'm really
proud of him. For example, we practiced going to the doctor.
That was something really big that the therapist worked on him,
you know, putting the monitor in his ear, doing a
tongue depressor. And when we've actually had to go to
the doctor, he was so comfortable. And we use com
counts and we're right there with him doing com counts.
So that's been really good. I haven't seen a lot
of regression, but some.
Okay, what are some of the things that he really
excels at?
You know, it's so funny. We have seen him balance
like a guitar on the back of the couch and
none of us, none of the adults, none of the
other kids, could do it. But he just balanced that
guitar on the back of the couch. He also took
a chair and put it on one leg and balanced
it in the kitchen and we were all just amazed, like, Isaiah,
how did you do that? And we couldn't do that.
So that is something that he's really excelled at. Just
his personality evolve. He loves roller coasters and we have
a golf cart. He loves writing the golf cart and
if I stop, he's trying to push the accelerator and
make it go.
That's great that he enjoys all that. Now, you just
brought up his personality. How would you describe his personality?
What's it like?
Oh, he's very laid back. He's very much an observer.
He likes to just sit in his spot and just
chill out, just like anybody else. I mean, there's times
that he wants to be mischievous and funny and we
know that and we can see those grins on his face.
He's very much a foodie and we love to eat,
we love to travel, so we know he loves tacos.
You just know that he loves these things, so his
personality is very chill though.
Yeah, that's great. With all this going on, did this
lead to you starting a charity?
No, it's actually it's not a charity. We're actually working
on that. So I have a business of face painting business.
When I wrote the book, I created Inclusive Art House
as a business because I didn't really know, like I
really know what to do. I just knew I wanted
to create art, and I created the business to protect
the art. But as I've evolved with this, we don't
really bring in very much revenue. I support it with
my other business. It's just become a passion of our family.
Just make the art and the books and do library
readings and different things for advocacy.
How do you see that evolving? Do you see that
getting to the levels of being a charity? What's the
plans on that.
Yeah, that is what we're thinking to turn it into
a charity. Currently. I'm working with other charities, for example,
the Art of the United States. We did some design
work for them for a fundraiser that they have, and
I work with a lot of libraries, like I said,
in schools, so just partnering with them. I'm hoping that
we can get enough revenue to sustain our expenses. We
have a couple of full time artists that do illustrations
with the book and the art. I want to show
you one of the pieces here, so I know your
listeners can't see, but this is one of the pieces.
You see the green ribbon for mental health in the background.
You can see there's a sign language the sun flowers
represent invisible disabilities. This is just I feel like this
is our signature piece because it represents all disabilities and
everyone has the right to be themselves and have support
and acceptance.
So what are some of your goals? What are your
plans for the next three, four or five years from now?
So I'm really interested with the charity work in helping
autistic people find work and purpose. For like, for Isaiah,
what that would look like maybe helping stock shelves for
a food bank or you know, he doesn't have a
lot of technical skills, but he can put things on
a shelf and just that makes him feel good. So
finding ways to help autistic individuals find purpose and work,
even though it may not be like traditional work, really
important to me.
Yes, I think that's a great thing to be passionate about.
So what do you see in your future for the
advocacy that you're trying to do. What are your plans,
what are your thoughts? Can you expand on your plans
for the future.
So I attend a lot of conferences. I still feel
like I'm new and I'm educating myself. And as I'm
on this journey, I'm trying to write, do podcasts, make
the art and put it out into the world. But
I'm still very much learning myself. So my advocacy is
learning and educating others as I'm learning. I went to
the Profound Autism Summit in Boston this year. It was
really amazing. That's a great group. If any of your
listeners can go to the Profound Autism Alliance and there's
just a wealth of information there for people that have
profound autism. I went to the International Conference for Autism
and Neurodivergent Persons in Orlando this year. Temple Grandon amazing.
Just her story is so inspiring and she just hits
so even though her diagnosis was so long ago, it's
still very relevant today and so much to say. So
that's what I want to continue to do and really
find ways to help in the community that are profoundly
autistic kids and adults can participate in the community in
some way to give them purpose.
What are some of the things that you've learned from
these conferences that you've went to. You went there just
to learn a little bit, meet a few people, engage.
Then all of a sudden you found things out that
you said, WHOA, I didn't realize this.
Add etonia was something that I didn't realize was such
a big thing that parents are dealing with, and I
think a lot of times people don't understand or know
what that is. I'm still like learning about it, but
just getting tested for that and change how you're treating
the autism, because it can be more than just autism
and the behavior. So that was really eye opening, and
it's so hard what some families have to go through.
I feel really blessed even though our struggle is hard.
Yes, it's very tough for many different people. It all
just depends upon the spectrum of where they fall and
how the families have to deal with it.
Autism is such a large spectrum and there's a lot
of misconceptions about autism. So these conversations are really really
important for sure.
Yeah, that's absolutely true. Now you wrote a book, it's
been out for a while. Can you give us a
little more information about the book?
So, yeah, Is he Can't Talk. I wrote it in
twenty twenty three. Yeah, it was published at the end
of twenty twenty three, so it's gotten some good feedback. Actually,
just finished the second book, Is He Can't Talk But
He Can Make Friends. So the first book we talk
about the communication the different ways, and in the second
book we talk about the social part of autism and
what Isaiah experiences like when he meets a new person
and kind of the processes that he goes through. And
that will actually be released in November.
That's great. Can you tell the listeners where they can
get this?
They can get it on Amazon of course, but also
our website, inclusivearthhouse dot com has all of our books.
We have three coloring books.
Oh, that's good. Can you give us a little more
information about that.
The color books are really cool. They're activity books. They
kind of back up the book with activities that you
can do to reinforce the learning the communication. We have
some word searches that are done in sign language.
And Yeah, that's really good. Now, what do you see
happening when he meets someone new? You just brought up
the social part of it. How is his social activity
and interaction? How does he react when he meets someone
for the first or even possibly the second time.
Yeah, so it's he takes time to warm up. The
key to Isaiah's heart is food. He's a foodie. So
I'll tell you a little story. We were traveling with
that with some of our artists and they did a
chick fil A run and got themselves chick fil a. Well,
one of the girls ate all the chick fil A
and Isaiah was sitting right there. One of the guys
gave Isaiah some of his chick fil a. So for
the next few weeks, anytime the girl would come up
and say hey, Isaiah, he just he would not acknowledge her.
But the young man that gave him the chick fil a,
he was all about the high fives, and it was
really really funny. He finally did warm up to andre
or the young lady, but it was really funny. It
was very clear that he was upset that she snubbed
him and didn't give him any chick fil A.
Oh, that's interesting. Yes, well, that's a big part of
interacting because at least by doing that, he's interacting and
evolving exactly.
And we've seen that develop over the years. For sure.
In the beginning, very much just to himself. As a
matter of fact, the BCBA told me that she had
never seen a person that she had no idea how
to motivate him, and so she's started with gummy bears
and that's how she won him over, was with gummy bears,
and then from there she was able to build on that.
So with everything that you've been learning, what you've been
going through for the past five years, You've been going
to the forums, the conventions, everything that you can do
to find out more about autism. Now, how do you
see this all blending together to help him, help your
advocacy and continue to build on what you've learned.
You know, I feel like that this is my duty
and my purpose, and I'm really excited and grateful that
I have the ability to do this work, so I
really want to keep building on it. I feel like
that there's so many parents that are just struggling to
survive and they don't have this platform that I have,
So I'm very, very grateful, and I really just want
to continue connecting with other PAS parents and also with legislators.
I feel like that we really have to reach out
to our representatives so that the laws can that there
can be support in the system. So that's where I
feel like my work is really headed.
So have you got in that arena yet? Have you
spoken with any legislators? How's that progressing?
I've tried. I went to Washington a few months ago
actually being part of the Profound Autism Alliance. They do
a lot of advocacy in Washington and they encourage all
fifty states, support in all of the fifty states, and
give a lot of guidance about how to participate in
your states. So I'm getting more involved with that.
Yeah, I think that's really great. The more you get
involved the better, especially when you get into the legislative
part of it. So what do you think is really
important that our listeners here on what you've been through,
what you're going through now, as well as your plans
for the future. What do you think that they need to.
Hear just never give up and really just keep trying
different things and reach out for support. There is support there.
You may have to look for it, but just don't
give up. In terms of what we're doing. I would
love to hear from anyone. I enjoy doing readings and
coming to events.
I think that's really good. How do they find you?
It's easy to find me. My website is inclusivearthhouse dot com.
Yeah that's really good. Well, this has been great, great conversation,
great information. I really appreciate you taking the time to
join us today.
Yeah. I'm so grateful for the work that you're doing
talking about mental health and autism. This is how change
and acceptance happens is having these conversations. So I really
appreciate the work that you're doing.
Oh it's my pleasure. Thanks again. Thanks for taking time
out of your busy schedule to listen to our show today.
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