Kristi Mickelson: A Mother's Crusade in Education and Advocacy for Autistic Children

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 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 is Christy Michelson. She's a romance author and
advocate for cancer, lupus, and autism. She's here to talk
to us about her life and journey with her two
autistic children. Thanks for coming on. I appreciate it.
I no, thank you. It's a wonderful opportunity.
No, it's my pleasure. So I understand that you have
two autistic children.
Correct, they're actually young adults now, okay, Yeah, we've gone
through a lot over the last twenty years.
Okay, So what's their age is now?
My son is twenty four or no, excuse me, he
just turned twenty five and my daughter is twenty two.
Okay, So at what age did you determine that something
just wasn't quite right.
Oh gosh, Okay. With my son, it was when he
was a baby. He was born four weeks premature, okay.
And when he was born, he was born not breathing.
He was turned blue. They had to do emergency surgery
through the umbilical cord to get him breathing again.
Wow.
But shortly after, it was like six months after, he
would start going into these tantrums where his face would
go blue.
He would pass out on me.
And it baffled back then, and they're like, what is
going on here? They all they could come up with
was he was having baby temper tantrums. Come to find
out later, like many he was late diagnosed. He was
diagnosed when he was seventeen. But we found out later
that it was autism meltdowns.
At birth at a young age.
Yeah, very young age.
But he would also as a toddler, spin in circles,
flap his arms.
He would bang his pared on the door.
And being a new parent, because I was only eighteen,
I didn't know. I just thought it was a young
boy being a young boy, you know, right, right. And
then my daughter was diagnosed at the age of seven,
but I kind of knew beforehand.
She would not talk.
She would talk, but it would come out as a fast,
gibberish talk. You could never understand her. And her schedule.
She had a very tight schedule. She had to watch
Tom and Jerry at eleven am, she had to eat
at a certain time. And if those schedules weren't attended to,
she would throw things at your head and she would
go into meltdown. Okay, And then when I put her
into kindergarten.
So she was having meltdowns at an early age. What
age was that and was she going to school when
that started happening.
Yeah, she was seven years old and she started kindergarten
and she was having the.
Meltdowns and everything.
And when she was in school, teachers started coming up
to my mom because I was a full time teacher,
and so people were coming up to my mom who
would take her to school and tell her, your granddaughter's
off the wall, she's strange, we don't understand her. I
my mom's so upset. She started crying and she called
me at work. I went down to the school to
find out what was going on, and they told me
they thought she just couldn't learn.
They called her stupid.
Yeah, And so I ended up fighting the school board
because they were telling me my daughter would never learn.
Well.
She ended up having to go through the testing and
the observation and everything, and they found out she was
autistic with auditory processing disorder and she has mild mental retardation.
That's tough. So did your son go through anything like this?
What was his situation when he was that age?
For him, schooling was very difficult because people didn't understand
him as well.
He was considered strange to the boys.
The teachers were okay to pen but to all the
other little boys, he was strange because he liked to
be by himself, right, he would constantly run. He loved
to run, okay, But other than that, asides learning like
he had a hard time learning as well.
So did you get to the point where you had
to go into a different school system that understood them
more so that you could get a better, better education
for him?
And that's kind of a difficult story itself back in
that time, because remember this was eighteen years ago, right,
My father was a cancer patient and I was a
full time teacher at a different school. So my my
parents took care of both of them, while I was
working and with my dad having the cancer, they were
constantly going down to a different place for cancer treatments
and stuff, and so my kids were pulled out of
school and put onto independent studies. But the independent studies
was through a charter school, and the charter school refused.
I mean, they worked with them for a little while,
but in my daughter's iep she would never graduate.
That she is like rain Mado. And I got mad
because that's just wrong.
To say that they could never learn. Yes, you know
that it's so untrue. Autistics can learn. Sure, I went
down to the school and I ended up in a
due process hearing. I mean, because they thought I was
neglecting my children by putting them through independent studies, no
matter what our situation was with the cancer treatments and
me working full time. So we ended up with a
long fight, I mean, for my children to.
Have an education.
I won a little bit with that, like they were
able to give my children six months more of education.
But I was finally able to start my own school
because back in California, at those times, when I lived
in California, you weren't allowed to independently teach your children
to homeschool what they call it, right, right.
So I opened up my own school.
I had to sign affidavit stating that I would not
use the school's curriculum or anything. And I was already
a teacher, so I was like, you know what, I
can do this stuff at home.
So I started teaching them.
And now my son, who they said could never get
an education, who can never have a job, My son
now works. He works at a local car wash, He
has medical insurance, he gets tips, he made friends. These
are as things at the school system try to tell
me that my kids can never have.
That's great.
My daughter she now cooks.
Dinners, she washes dishes, she washes clothes, She has a
support animal that she takes care of. Like they now
are able to thrive into the world today when the
school system back then told them they couldn't. So I
really want your listeners to know, follow your heart, follow
your gut as a parent, don't take nothing from other
people about what you can or cannot do with your child.
You know their voice, you know them best.
Absolutely. Yeah, that makes great sense. When you first started
finding out that they were autistic, how did you adapt
to that? Because it's one thing happened one, but then
it's another thing having two. Each autistic person is different
from themselves. How did that affect you and how did
you react to it? What was your way that you
could cope with it?
At first it was kind of shocking, but at the
same time, deep down I knew again I work special
needs for a preschool, so I knew what to look for.
But it was also shocking because you don't expect that
of your children, Like it's kind of scary. It's really
kind of scary because you don't know what to expect, right,
and then trying to learn everything about the autism spectrum
because my son was so different than my daughter. He's
very high functioning with sensory processing disorder where he can't
handle certain sounds and he can't handle certain textures of food.
But my daughter, on the other hand, she's moderate severe
but with auditory processing disorder, which is where she can't
understand certain directions. So but she loved animals and my
son couldn't handle the sounds. So it was a big
adaption trying to figure out how do I mother one
child and be completely different with the other because they
both had such different needs.
Absolutely, it was a shock.
It was a shock, and I think as a mom
you just kind of learn to adapt to it. I'm
not even sure how to explain it, Tony, but yeah,
it's a huge shock. And I think the best advice
that I can say is to do everything you can
to learn about autism. Learn about your child type of autism,
because there's different types of autism. Exactly, the spectrum is huge.
Learn about your child individual type, and do everything you
can for them.
So how did how did that affect your circle of friends?
Everything's going along, you know, you're thinking you got the
all American family, and then you find that you've got
an autistic child. Then all of a sudden, you find
that you have another autistic child. So that requires a
certain amount of dedication from you, as you just said,
but it also affects what you can do and can't
do socially because of what they need. How did that
affect that end of it for you?
That was actually very difficult, to be honest with you.
A lot of people back then and still now to
this day, didn't understand autism, right, So they thought if
my children went into a meltdown that they were crazy, right,
And so a lot of people wouldn't come over. My
husband was a truck driver, and I was alone most
of the time. I ended up moving in with my
parents just to have somebody to have my back, sure everything,
because nobody.
Would come over.
That's tough.
It was very sad, and I lost a lot of friends.
But as my children got older, I would say the
preteen area, I was able to since I had educated
in myself on autism, I was able to educate my
friends and show them how to interact with my children. Sure,
and I was able to have friends again. And it's
been amazing that when you learn and when you educate yourself,
that's when things will change for you. I mean, yes,
it's very scary and very hard to deal with things
alone at first, right because a lot of people will
not understand what you're going through. It was very emotional.
But once you learn what you need to do, I
think you just learned to go with it, and you
start teaching people about it and they start to understand
and they I get so many compliments now that my
children are very well behaved and that it shocks people
all I didn't expect that of autism.
Yeah, just because they're autistic.
Doesn't mean that they don't know manners and that they
shouldn't have manners.
You know, Yes, it's very unfortunate. I interviewed one person
that was a public speaker. He actually had people coming
up commenting to him saying they didn't realize that autistic
people could have children. So you are one hundred percent correct.
People just do not understand exactly.
And it is so sad.
And that's one of the reasons I'm an advocate for
autism awareness. People need to know that they are just
normal people.
They are people.
The only differences they think differently than we do. It
is a cognitive disability. It doesn't mean they're crazy, right,
It just means they think different.
My daughter, for instance, she thinks in pictures.
Yes, so if you tell her, if you tell her
a direction like please go get me a cup of water.
In the beginning, when she was learning what.
That meant, I had to use what it was called
a PEX board, right, And a pechs board is basically
a board with visual cards on it, and you teach
them through that and then they start to adapt to
these visuals and they'll learn.
Right now, what's the age difference between your son and
your daughter?
Three?
Years three years. Okay, so with three years difference. They're
both autistic, both at different levels of the spectrum. How
do they get along? Do they interact? Well, actually, I'm
very surprised. They are almost best friends.
My son is very, very very protective of his sister
and she is very protective of him.
And they think about.
Each other all the time, Like if he gets something
from the store, like if he gets a paycheck for more,
he makes sure that he buys his sister something, which
I think is wonderful. Oh yeah, And she's the same way.
She's always thinking about what can I do for Josh,
you know. And they're best friends and I absolutely love that.
I'm very proud of that of my kids. They've grown
up to protect each other, love each other, and they
understand each other.
Yeah, that's awesome. That's a very integral part of family.
And sometimes when you have one autistic child, let alone two,
that can disrupt the family dynamic and cause a lot
of issues.
And you know, that's actually correct. My husband did not
understand my children when they were younger. And you got
to remember too, he's a truck driver who really isn't home.
So when he would come home and one of them
was in meltdown for some you know, for some reason
when they were younger.
He thought at the time, he goes, why aren't you
disciplining them?
Right, I go, honey, there's certain there's certain ways to
discipline them, but right now, when they're in a meltdown,
they need that few moments to gather themselves.
Right.
A meltdown isn't them throwing a temper tantrum because they're mad.
It's because they don't understand what's happening around them exactly.
It took a lot for my husband to finally understand
what was going on, how to work with them, how
to tease them, how to play with them.
It's very hard on a marriage.
It is because the mother's fully and and the fathers sometimes.
Don't get me wrong, there's a lot of fathers out
there that are fully invested in their children too, but
I think it takes them just a tad bit longer
to fully understand because of the mother, you know, constantly,
you know.
Being a mom, right, right, Yeah, that's true. I've talked
with a lot of a lot of parents and it
took them a while. There's one parent I spoke with
and he knew a lot about autism, so he accepted
it a lot quicker. And then there was another one
I spoke with it almost destroyed their marriage. And then
because I talk with several people where it has because
I think it's I can't remember the numbers, but I
think it's like in the eighty percentile range of divorces
of autistic children. Yes, it's high, yes, And that's sad
it is.
And I want to correct myself because I don't want
to offend anybody or anything like that. I am absolutely
not saying that any fathers out there have a hard
time accepting it or take longer. What I do mean, though,
is the mother naturally has their child in their belly,
you know, in their womb for months, right, and you
already form connection.
And that's what I mean by that.
It takes the father just a little bit longer because
they haven't had that connection, right. But I have met
from several wonderful AUNTI them dads, because sometimes it's the
mom who couldn't handle it, yeah, and the mom ends
up leaving, right. So I tip a little parents of
all special needs, autism, anywhere, any kind of special need,
all parents, I tip every single one of them because
it's very hard to deal with.
But we love our kids.
It is can't You just can't give up on them
because they don't know and they didn't ask to be different.
They just turned out that way. So you have to
learn how to adapt, how to develop it and make
it work. I mean, sometimes depending upon where they land,
they can make it work and others sometimes can't. You know,
it's unfortunate. Yeah, it's a collective effort from everybody, that's
for sure.
Absolutely absolutely.
You said that one had textures issue, the other one
had issues with sound. Have they got that under control
now where they can at least come into something that's
a little bit different than that's not their comfort zone,
but they can still work through it and be okay,
Oh pretty much.
My son, it took a lot longer, and we tried
everything because he can't handle sounds.
Like we have a turtle that is a water turtle.
He stays in the water tank and that turtle would
scratch the rocks on the bottom of the tank and
that would just irritate my son.
Well, it took a long time for us.
We would have to have him sit in that room,
even though he would throw a melt down, sit in
that room for five minutes at a time until he
can gradually learn to deal with it. And a lot
of parents, I'm gonna be honest with you, a lot
of parents would not agree with my method on that,
but it worked for my son. You have to know
your child, right. I would try earphones with my son.
Sometimes that worked and it didn't. He can't handle dogs barking,
so we tried the earphones, right, and the sound for
him amplifies, So if a dog barks, it amplifies and.
It would hurt his ears.
Yeah, now that he's older and he's around more noises
because he's also a huge wrestling fan, and he tried
out for professional wrestling, okay, and he had to learn
the sounds of the wrestling, so he learned to deal
with it. Like he forced himself to sit in those
rooms with those loud noises for a while until he
was able to handle it. And like I said, dumb
parents will not agree to that method, but it worked
for my child.
You just have to know your child.
Yeah, you have to. You have to do what works
for each individual. You can't there's not one size fits
all exactly.
My daughter, she doesn't really have any sensory issues, but
she does have the auditory processing, and that that's something
we can't change. She just has a hard time understanding.
So like if you were to say get me water
like I used earlier, all she's going to hear is otter.
Okay, she only hears part of what you're saying.
Right, you have to use visuals and so they get
used to hearing those those strange words, then they understand it.
Right now, you mentioned one had texture issues.
That would be my son.
Yes, he would have a hard time with the tags
on his shirt. Okay, he would We constantly have to
cut those off or he likes to chew, so he
would chew his shirt. He would chew on his nails, okay,
chewing on pens. And he also has issues with textures
of food.
Yeah, that's my next question.
Yeah, he can't stand on meat loaf, but he loves hamburgers.
It's the texture of it. Yeah, and my daughter's very picky.
She has a very minimal menu. It's grilled cheese, pizza
or burritos pretty much.
That's what my daughter loves.
Okay. What do they do for just chill time? They work? Now,
they get out there they intermingle with other people when
they want to just take and relax. Do they have
anything that they just immerse themselves into.
My son is he's the one that's able to work.
He's very high functioning. Okay, He to just relax. Loves
to watch video blogs, blogs blogs, I'm sure, and I
forget what they're called, okay, but he loves to watch
those on reptiles because one of his obsessions is reptiles,
especially snake okay. And he loves wrestling, so he'll sit
back and he'll watch WWE for hours and learn the
moves by visually watching it.
And then my daughter to relax. She loves her dog.
Her dog is her emotional before animal.
His name is really what kind of dog?
He's a jack Terrier?
Okay?
And then she loves to play her xbox and just
to chill for a while. She loves to watch I
Love Lucy Ree Runs.
Okay, all right. Now, They say that a lot of
autistic people will get very focused and when they get
that bullseye that they've zoomed in on, they're going to
learn everything and immerse themselves and everything they can possibly know.
Are they both that way as well? My son is okay.
He's like again, very into the wrestling.
My daughter is severe or moderate severe with the mental retardation, right,
and she doesn't focus like that. It's a completely different
level with both of them.
Yeah. Now you say that he's into wrestling and tried
out for wrestling. How did that work out for him?
He was actually in top of Texas Pro Wrestling training
for quite a while and then unfortunately with him being autistic,
both kids when they were younger, dealt with some bullying.
Oh yeah, well, unfortunately, when you're in wrestling, you have
to do it's called paying your dues. And my son
was doing head of secure or not head of security,
but he was in security one night working for the
head of security and he was left alone for a
few minutes due to the head of security had an
murdency to go deal with, right, And one of the
people in the audience started calling him retarded, started calling
him a dummy, started telling him why is he.
Doing a man's job when he was just a little boy.
My son was twenty one I think when he started,
and it really hurt him to the point where he
came home and he cried and he cried and he said, Mom,
I'm tired of being stupid, and I had to tell him, Son,
You're not stupid. Nobody in this world is stupid. I'm sorry.
That's how I field. There is no one in this
world that is stupid. He ended up leaving wrestling because
he didn't want to be a part of something where
people can make fun of you. And when he's done that,
all you know he'sat metal Life.
Yeah.
Yeah, he left wrestling, but thankfully the people that he
trained with, and I have to give a shout out
to his ex trainer, Nathan Briggs, hired him at his
day job, his shoot job is what they call it Okay,
and he now works with his ex trainer at a
little car washer in our local town of Amarillo, and
he made friends and he's came out of his shell
tremendously and he has learned so much from that experience.
So it was a good thing a bad thing at
the same time.
Yeah. Yeah, So how is the family handle it all?
We've gone through the friends and how you went through
that and because your parents handled it really well because
you moved back with them. Do you have any other
family that was questionable in the way they addressed it?
Most have actually been pretty accepted with it. My husband's
parents are no longer with us. Oh okay, so they
weren't around my children long enough to actually know most
of it.
Right.
My husband's sister is very good with it, and my
brother is absolutely wonderful with it. And my daughter's name
is Cassie, and ever since she was a baby, I
guess to him she looked like a little cabbage patch,
so he called her cabbage And okay, they have this
wonderful little uncle and niece relationship that it's been absolutely wonderful.
And of course I give a lot of shout outs
to my parents who helped raise my children.
Oh yeah, yeah, that's tremendous. I mean, you've got to
have good role models in there that can help them grow,
help them build, learn things, be compassionate. It takes a village,
as they say, right.
Absolutely, And unfortunately I lost my father back in twenty eleven.
That he was a huge role model to my son
because my husband, again was a truck driver, so my
father would go out and he would try to teach
my son, like how to throw a ball, how to
moll a on on, like typical man things.
Yeah, it's wonderful.
To have my parents there and I tip my hat
and I thank both of them, even though my father's
no longer here.
Yeah, yeah, that's that's unfortunately part of life. How do
they handle, you know, speaking of just life, so many
different things in this world upside down now and different
different things happen and we have to scratch our heads
and the way people look at things, how do they
handle that? Because part of life is being able to
deal with with the bumps in the road that can
come your way. Unfortunately, sometimes that's losing a family member
or whatever. How is their ability to handle that?
Developed With my son, he takes the loss of a
family members through death very very very hard. He gets
angry and he gets very emotionally upset, like he understands
that person is alonger here, but he takes it as they.
Left him, right. Yeah. And my daughter, it depends on
who it is.
If it was somebody in the family that she was
close to, such as my dad, she knows and she
understands and she cries. And when she lost her first
the first support dog, she cried. But with my husband's parents,
she didn't really know them, so it really didn't affect
her at all.
Yeah, Yeah, what do you see for them in the future.
Now they're in the twenties, they're doing what they do.
Where do you see the development going to well?
With my son, I can honestly see him maybe a
little bit longer down the road because he does think
a little bit slower, and that's hard for some people
to understand.
But I see him.
Actually getting married, maybe pontantly, going back into the wrestling
world now that he's a little bit older. He still
loves it and he's very into that world. And with
my daughter, her hopes are to work in a zoom
Oh okay, so maybe I can get her into a
volunteer program or something for that, but unfortunately she is
unable to actually work, yeah, because of the way she functions.
Right, So if she was to work at a zoo,
how would they have to approach that, What would your
thought process be on how that she would have to
be handled to be able to do that kind of thing.
She's very patient and very understanding, Okay, when you talk
to her at her level, So basically with her mentality,
she is not twenty three mentally, She about twelve mentally,
So you have to talk to her in that aspect. Sure,
and sometimes even lower. It depends on the subject. So
when it comes to teaching her something, I have to
actually teach her at a kindergarten level.
Okay, So that's how they would have to approach it, right, And.
This place is out there that will do that. You
should have to find the right place absolutely.
And I have to say, back when we lived in
California about four years ago, and I lived there most
of my life, there wasn't a lot of opportunities for
autistics out there. But when I moved here to Texas,
I have to tip my hat to Texas on this.
I moved here to Texas and all of a sudden,
both of my kids were getting opportunities for things great.
So I think as a parent, you need to find
out is the place that you're at suitable for your children.
And if you're putting them in school, check out your
school and see how they treat autistics, because there are
some schools out.
There right that are very mean and they're abusive.
And like I guess my words of the vice dra
all for anything in life with your children with autism,
make sure you research everything.
Yes, that is the biggest she is.
Research everything from schoolings to homes, to cities, to people,
just research everything.
Yeah, well, that's good that your son's doing well. It's
good that your daughter is finding her place. This is
something that comes up not every podcast, but several the
parents worry about their kids on what happens when we're
not here. Have you kind of looked in the future
a little bit? Does that scare you? Or do you
think everything will be okay? If you got plans? What's
your thoughts on that?
You know, Tony, that's some thing that I worry about
on a daily basis.
Again, my son takes everything very hard. My daughter sometimes understands.
It's very emotional on some things. And for a long
time I.
Couldn't figure out what I would do because my son,
he's high functioning all that, and he can work, but
my daughter cannot. Right, So I've been going through friends like, hey,
you know, if anything ever happened to me, do you
think you can handle this? And truthfully, most of them
said no, that they could not handle it. But however,
my son's boss, his ex wrestling trainer, he looked at me,
what about three weeks ago, Actually this is a very
new subject that we were actually been talking about, and
he goes, what are you going to do if something
ever happens? And so I told him what my worry was,
and he goes, well, you know, Josh, your son, he's
able to be okay.
But we had a little house in the back.
We'll put him in the little house in the back,
and we'll put Cassie in the front and you know,
in the main house with us. And they know us
and they're willing to take on the challenge. And I
thought that was absolutely fabulous and wonderful.
That is that is Truely.
It touched my heart because you don't hear too many
people offering.
Them no, no, I mean we're unfortunately, we're a me
world right now. You know what's in it for me exactly,
not what's in it for you or how can I help.
But there's a lot of good people out there. I mean,
this just just proves that you've got one right there,
right in your backyard. And that's a great thing. So
it just shows that even though we can look find
bad every day on the news and in the world,
there's still some.
Good, absolutely, and I tip my hat to the good
ones out there because people like us, people that are
special needs families, we need good people like you to
just offer a little help.
Sometimes you never know just what you could be doing
for that family.
Absolutely, So what's some words of advice that you would
give to Let's say you you come across a person
they just found out that they they've got an autistic
son or daughter. What's some words of advice that you
could give someone's listening to this podcast that's just new
to the autistic world and now they're trying to figure
it out. What's some tips that you could give.
I think my very first tip, and I think the
most important one is to love your child regardless. Number one, sure,
Number two definitely again, research everything that the internet's wonderful,
Talk to doctors, talk to schools, Research everything you can
on the autism spectrum. Research how your schools in the
local area treat autistics. It.
Research is the key for everything. And I think the.
Third one would be to be the voice for your child,
right be the voice and make a difference for your
child because they may not have a voice for themselves
and they're going to need someone who can stand up
for them.
That is the hugest part right there.
And again, show your child und love and try to
have patience because it is very nerve wracking.
Sometimes you'll want to pull your hair out.
Yeah, but have patients, love your child, and try to
educate your friends a little bit in a nice way
so that they understand and you don't lose your friends.
Sure, because it's the great unknown exactly when people are
first starting out, they don't know anything about it. There's
nothing worse than not knowing anything about it. Because you
can do your research, You're going to find fifteen different
ways of approaching something, but you don't know which one
is the right way exactly.
You have to know your child, like as you go,
you'll know what your child can and cannot handle, right,
And I think that's the most important thing is And
if you have two children in the house, don't try
to discipline them both the same way, right, because it
doesn't work.
One can handle it and one cannot.
You have to find your personal you know your needs
for that child, right.
Absolutely. Well, it's been a great conversation. I've really enjoyed it.
I really appreciate you taking the time to come on.
Thank you so much.
It's been an absolute pleasure, And I really hope that
somebody gets some kind of something out of this. Because
autism we need more acceptance out there, Tony.
We really do.
People know about it, but they don't really know what
it is. And I hope people listening to this get
a little bit of knowledge and know that they're not
strange people. They're just people that think a little differently
than we do. Yeah.
Absolutely, Actually, my podcast slogan is autism awareness, acceptance, and understanding.
I did a lot of research myself before I started this,
and the biggest thing I found that was the understanding
part of it. So that's kind of what I'm pushing
with this podcast, is the understanding part. And hopefully each
one will have a tidbit of information that somebody can
use if it helps one person as a win.
Absolutely change the world, you know, changes the way that
everybody thanks one person at a time, And I'm not
saying to change the entire world, but right one person
at a time, that's all we can help.
For exactly exactly. Well, good, I think we've got that.
Thanks for coming on, Thanks for taking the time out
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