Ready?
Ready!
Here we go!
Here we go!
Ladies and gentlemen, one of the best tap dancers in the world, Elmer!
Yeah!
Here we go!
Happy surprise!
Oh, I love it!
Yeah!
One of the first things we started to notice was, Sean, for the first year and a half of
his life, he was developing normally.
He had language.
Then at about 18 months, he reversed and he became non-verbal.
And he started doing repetitive behaviors.
We didn't think autism at first.
We have other friends who have kids with speech delays.
It happens.
Sometimes it's just one of those things that means nothing.
And with Sean, what was funny was he doesn't have enough criteria for any one disorder.
He didn't have enough of the classic features of autism to have a specific autism diagnosis.
What he has is called pervasive developmental disorder.
And I've been told in layman's terms that means he doesn't have enough criteria for
any one specific disorder, but it's obvious something's wrong.
So that's kind of like the catch-all, like, we don't know what the hell's wrong with
a diagnosis.
Just given that label.
Yeah.
But it does put him on the autism spectrum.
So he does qualify for special ed services and therapy.
Then we had Todd, 16 months.
Todd is only 16 months younger than Sean.
Todd, at about a year, was non-verbal.
So we just did the same thing again, just therapy certainly isn't going to hurt them.
So we just went through the same thing.
And Todd just hasn't developed.
And Todd, when we took Todd to the neurologist, he was given an official autism diagnosis.
He's classic.
Both of them were constantly going to different positions in the house, curing things, listening
to a lot of, like Todd's favorite is anything loud.
He'll grab a door and slam it up against the wall because he loves to listen to the sound
of the door hitting the wall.
But no imaginative play, that's another strong feature.
Now Sean, on the other hand, he's starting to engage in an imaginative play.
And he has Thomas, Thomas the train and acting things out.
So that was a big relief.
To start to see him use his imagination, and...
I see Thomas.
I'm serious.
I wanted to read more.
I got him.
But when the therapists were over for Todd, we tried the same Easter Steals with early
intervention with Todd, and they were able to get him to start doing small amounts of
hand over hand.
Stacking, he can do stacking.
When you, if he'll take the blocks and kind of put them in front of himself, and if one
of us kind of puts it on the top, he'll take the next one and stack it on the top.
That was a big breakthrough for us just because he was constantly just running around doing
his own little thing.
But when they got him to sit still and start stacking things and listening to them, we
knew we were getting to him.
And we just kept, you know, more and more therapy coming to him to help him out.
And he will listen after you see his name, unfortunately, about four or five times, but...
Q-L-M-S.
Sean is a math.
He's obsessed with math and reading.
He's obsessed with reading, yeah, like numbers and letters, yeah.
Actually when he, at school, his math skills, they were going to get some textbooks for
him and computer software for a third or fourth grade level, and he's in preschool.
District wanted to put him in, was a classroom of completely nonverbal children.
Sean is, he's verbal, so I didn't think that that would be beneficial to him to be in a
completely nonverbal class.
I don't believe in lowering the bar, I believe in raising it, but the school district did
admit to us later that that school is the cheapest for them.
So they always suggest the cheapest school first, and then if the parents are unhappy
and try to fight it, then all of a sudden they'll show you the more expensive schools.
Which really isn't fair, because if we hadn't fought, if we hadn't gotten angry about it,
they just would have...
Q-It's a shame that you have to do that nowadays.
A-You know, just dump them.
It is a shame you have to get upset.
Q-The economy and everything else, too, about all the school teachers that are getting their
pink slips and everything else, and all these schools are closing down their fundings, the
children are going to suffer.
A-Yeah.
As a parent, and I'm sure all parents feel this way, whether they're kids or special
out or not, I'm not going to live forever, Tim's not going to live forever.
I need to know, and I'm going to do my best to get them to a place where they can have
a good life without me here, to do it for them, and that's an especially scary thing.
When you do have a child with disabilities, is that you do worry what's going to happen
to him when I'm gone.
So I just have to do absolutely everything I can while I'm still here to get him to
the best possible place I can, so he'll be okay.
Q-What does consuming mean?
A-Tea or drink someone.
Q-What does boisterous mean?
A-Oisean mouth.
Q-Hi, my name is Becky Bakula, I've been working as an ABA therapist for about two
and a half years.
I have four clients, all boys, across the Chicagoland area, and the first child I began
working with is Nikki.
Q-Do you need something for a long time?
A-I can't hear you.
Q-Do you want to keep doing something for a long time?
A-ABA therapy is, it stands for applied behavioral analysis, so it is, it's a very good therapy
used for children with autism.
And each ABA therapist comes in and works with the child one-on-one a couple times a week.
It could be anywhere from one time a week, up to 40 hours a week, depending on the child's
needs, depending on how severe.
So it is really completely based on each individual child.
Q-Oh, you got the highest number.
A-Look, sometimes when we are doing work or he's just not as engaged as I would like
him to be, I'll lay him on, and I'll make a game out of it, I'll lay him on the ground
and I'll give his body squeezes, that's what therapists usually call it, and I'll squeeze
his legs all the way up, and I'll squeeze his arms all the way up to his shoulders,
and he really likes getting pressed in the head.
If he's unfocused and if he's unengaged, the second I do this, just push on it, he totally
relaxes and he just loves it.
Sometimes I'll swing him back and forth with his speech therapist to get him engaged.
He's always like, more, more, more, and also with all these things that meet his sensory
needs, they promote engagement, and he likes it, so he needs to ask for more, so it's also
great in communication.
Nicky, did you like that?
Yeah!
Do you want me to do it again?
Yeah!
Okay, what do you say?
Becky, swing me again, or Becky, I want to do upside down monkey, so when he wants
something, his communication is awesome.
So this is a drill in the ABA program, it's listening for absurdities.
I tell him a sentence, it's funny pictures and a funny story that goes along with it,
and it's just what's wacky, or what's silly, or what's wrong with it, and he has to tell
me the correct sentence instead of the wrong one.
So usually we're sitting at two chairs in a table, but he took over his room with the
toys, so we'll just sit down for today.
Okay, ready Nick?
You for what's wacky?
Yeah!
Okay.
Becky, the cow likes to bark.
No.
Becky, the cow likes to move.
Good.
Good.
Miss Mavis took her pet fish for a walk.
A lot of kids with autism don't like to be touched, they don't like to be hugged, they
don't like affection, but Nicky sits in my lap, he cuddles with me, he puts his head
on my shoulder, he loves piggyback rides.
Sometimes when he's sitting watching a computer, I have my hair in a ponytail, and he'll have
his arm around me, and he'll just play with my hair, and play with my ponytail, and twirl
it around his finger, and I just really like that, it's good bonding.
All the effort and work I'm putting into him now is in hope that in the future he could
have a job, he could, I mean he'll probably, he'll always need some form of assistance,
but he has so many talents and knowledge that I don't understand why he wouldn't be able
to have a job working at this zoo, cleaning, you know, giving the elephants baths, he would
love that.
He so much relies on other people to give him love and give him attention, because he needs
that so much, and he wants that so much.
In every interaction I see, even if it is negative interactions, it's because he wants
attention, and he wants to interact.
Sometimes he doesn't always know how to approach a person, or how to talk to a person, or say
hey let me join in your game, so that's something I'm really, really working on with him, it's
okay to go up to somebody and say hi, my name's Nikki, can I join in your game?
What really took me by surprise, I'm trying to think of how old Taley was, maybe around
ten years old, I took her to the dentist, and she says mom do you remember we were here
last year on May 5th, and you were a purple blouse, and we ate at the oak tree, and I
just looked at her, and I thought what May 5th last year, and I went up to the receptionist,
I says would you look and see when the last time is that we were here, and she looked
at that, and she said we were here May 5th last year, and I said oh my gosh I'm having
a moment now, my daughter's been logging things, and it was around two, oh she started talking
a little bit after one, maybe a year and a half old, very little, but she would say people
are coming mommy, or truck bus, whatever she would see, and it was a little after two that
she started drifting off, you know when she went into that world of autism, one of the
teachers recommended to me just to keep talking to her, even though she may not seem like
she hears you or she's listening, just keep talking to her, and it's something I did
do with her, and years later I realized that she was absorbing a lot of what was being
said to her.
My favorite music artists are ACDC, Enigma, Roy Orbison, Stevie Wonder, and Coldplay.
I'll see Rush CD is The Trees, Subdivisions, Time Stand Still, and Seal is amazing, Van
Halen is Jump and Panama, and another Kanye West song is Love Lackdown.
You know when Haley was in the early childhood program and Haley said well she has a disability
and I said you know what, now she has the ability to learn.
You just have to teach her in a different way, you know I would work with her like
to connect the dots, you know, it was very challenging for her when she was three, four
years old, but she knew her ABCs, you know first you learn your ABCs, you connect the
dots, and the same thing with the math, she wasn't getting math at all until they taught
her touch math, and she said oh now I get it, and she was going through math, you know
with flying colors then, so I hate to say they have a disability, they do have the ability,
they just have a different way of learning it.
You know it just seems like it's just been a slow steady climb, you know I remember for
years just wondering am I ever going to be able to have a conversation with my daughter,
and little by little you know she and her speech came along, and then I think it was
a day that we were having a conversation actually back and forth, and I was just wowed by it,
so I think there were six sentences back and forth and I thought this is big.
It has happened before where children very young start ABA therapy up to 40 hours a week,
and a year later they don't have a diagnosis anymore of autism, they've been brought out
of that autism.
I remember when before my daughter was born, and a lot of people do, people out in public
see somebody with a disability and they try to ignore them, and you know I think I was
kind of one of those people and I wondered why, and the reason is because I just didn't
know how to, I was afraid to interact with them because I didn't know how, so I think
that has taught me something very valuable with people with disabilities now that I try
to make an effort to say hello or acknowledge or you know say a kind word or just not run
away but to recognize them and not be afraid.
I was reading an article about a woman who said that you have all these dreams, as soon
as you decide that you want to have children, I've wanted children ever since I was a little
girl, and in your head you have all these dreams and fantasies about who you want them
to be and what you want their life to be like, and then when it turns out to be something
like this, which is something you never imagined, there is a greeting process you have to go
through.
How old are you?
Five.
You're five.
How old is Tati?
Six.
Tati's not six.
Three.
Three.
Well, Tati's not six.
Three.
Three.
Four.
Two.
One.
Tati's not eight.
Tati's not nine.
Tati's not 10.
That's how they attached them.
I don't look like Tati.
They attach them like that.
Tati was 8 and Collaborative.
They are five.
They are six.
There's so much to be somebody here to most people together.
