Expect dont Accept

[Guest guest]

I felt as if I was reading Granny & 's story. This speech is no less

than amazing, and it carries a positive message that is too good not to

share.

Daugherty 2009 Keynote Address

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Daugherty delivered the keynote address at the Remarkable Families

Symposium on Friday, April 3, 2009 in the Cintas Center. is a graduate

of Washington and Lee University with a degree in journalism. He has worked

in Baltimore, Norfolk, Va., and Dallas and is now a columnist for the

Cincinnati Enquirer. He is an award-winning sports journalist and author and

has been Ohio's Columnist of the Year seven times. Married with two

children, is also a dedicated husband and father who has been involved

in disabilities advocacy for several years. Below is the text of 's

keynote address, provided by and posted with his permission.

Keynote Address

Thank you very very much for inviting me to speak to such a " remarkable "

group of people. Life has given you a gift. If you don't realize that

already, you will in time. I promise you.

My daughter Jillian is 19. She is a senior in high school, who will attend

Northern Kentucky University in the fall. She has performed in the school

play, she has managed the school volleyball team, she was on the junior

varsity dance team that entertains at halftimes of basketball games. Believe

it or not, she holds the school record in her weight class for the bench

press, the dead lift and the squat. (Dad already had one son. Maybe he

wanted another.) Last summer, she worked 12 hours a week in a daycare

center, making almost $8 an hour. The kids loved her, and cried when she

left to go back to high school.

And she has Down Syndrome. In some respects, that matters a great deal. In

others, it matters not at all. It's about perception, mostly. It's about

insisting on getting what you pay for, and not leaving the ticket counter or

the insurance office -- or the high school conference room -- until you get

it.

Ultimately, it's about giving your child the chance every other child gets.

People look, but they don't see. People, and I'm talking qualified

professionals, people trained in special education, too often don't look at

Jillian and see possibility. They look at a child with Down Syndrome. They

don't see who she can be. They conjure a stereotype. It's easier that way.

Jillian once had a special ed teacher who sat in an IEP meeting with us and

said, quote, she can't learn. Jillian has had teachers, too many teachers,

who could not be bothered to explore her possibility. It has been amazing,

watching these teachers, who at some young age must have though teaching was

an opportunity to change a kid's life. Presented with Exhibit A in my

daughter, most of them have attempted the bare minimum. They have missed

their calling. They're enriched only by a paycheck. My wife Kerry and I have

spent 19 years trying to change their perceptions. We will never stop. We

have been guided by one thought:

Expect. Don't accept.

We have not allowed our daughter's aspirations to be tethered to the the way

people look at her, without seeing her. We let Jillian set her own bar.

Wanna dance on a team? If you're good enough. Wanna get a summer job working

with kids? If they'll hire you. Wanna set the school weightlifting record.

Sure, great, absolutely. No steroids.

We never say never. Never is not a word. It's a self-defeating state of

mind.

We have to change the way people think before we can change the way they

act. Altering perceptions is like breaking a stone with drops of water. It

can be done, if you're willing to take the time.

It hasn't been easy. Who said raising any child was easy? Kerry and I have

blazed more trails than Boone. We have sat in countless meetings with

teachers and administrators. We have spent countless nights and hours

agonizing over homework assignments that were not modified for Jillian or

overly dumbed-down for Jillian, you know, that kid with Down Syndrome. We

have exhausted a lifetime's worth of patience in 12 short years.

We have spent an equal amount of time educating the educators. Don't just

look at our daughter. See her.

Don't put up Stop signs for my kid. Let her direct her own traffic. If you

don't, we will be there, hauling you into a meeting, demanding for Jillian

what you so freely offer every other kid: An honest chance. Let her tell you

the height of the bar. Expect, don't accept.

Great strides are made when we remove the word No from our vocabularies,

when we expand our thinking to account for the impossible. We went to the

moon, didn't we? We eradicated polio, we can take pictures with a telephone.

We elected an African-American president of the United States.

All any of it required, at base, was a disbelief in limitations. She can't

learn? No, you're not willing to let her try. As parents, we cannot let that

go unchallenged, not ever. We owe our kids that much. Expect, don't accept.

Do not give in to those who would ignore their better natures, because it's

easier to retain a stereotype than change it. Change requires work, but it's

the only way we improve as human beings. When people resist change, protest.

Scream real loud. Give 'em hell. Don't let them tell you what your kid can

do. Expect, don't accept.

Let me tell you some about the life of Jillian Daugherty, young and

improving.

On the harshest emotional night, Jillian Daugherty couldn't wait to

get out. The occasion of her birth was melancholy to everyone but her.

Jillian loved being born. Her older brother had taken his sweet time.

He slept late in the womb. Fourteen hours of labor before he emerged, wary

and wailing. Jillian couldn't wait to see everybody. It took less than an

hour. She came out like a watermelon seed between two fingers. Hel-lo world!

I think about this all the time now, whenever Jillian wakes up early on days

she can sleep late, or hears me coming into the house and screams like it's

1955 and I'm Elvis. Jillian can't wait for the next moment, the next hour,

the next chance to be Jillian. Jillian wasn't born 19 years ago. She was

unleashed.

When she was a couple months old, she developed mucous in her chest and

lungs so thick, she could barely breathe. Jillian was in the hospital 11

days and nearly to the point she needed a respirator. Then one more in a

silent army of doctors poked her in the heel with yet another needle.

Ticked her off.

Jillian screamed so profoundly, it knocked the snot from her chest.

She's never stopped expressing herself. There was a time, many, many years

ago, when I yelled at her for some transgression or another. Unfortunately,

having Down Syndrome doesn't mean you won't spill apple juice or try to ride

the dog like she's National Velvet.

Anyway, I'm airing Jillian out. During a pause in the action, she looks up

and says, " Do you want a piece of me? "

My daughter is a piece of work.

Something that we as parents have learned is, every small achievement is

worth celebrating: Tying shoes, answering the phone, writing thank-you

notes, making the bed, fixing breakfast. After each of these little

triumphs, I always ask myself: Who got the better part of this deal?

Jillian? Or me?

As parents, we've spent lots of time hearing what our kids can't do, will

never do. We heard it from the first day. She'll never be able to...

complete the sentence. We never bought into that. You get what you expect.

Not what you accept. It is the difference between settling and battling. The

difference between daydreams and real ones. You get what you expect. Not

what you accept.

Jillian would never ride a two-wheeler. That's what we heard. She wouldn't

have the coordination. Even if she did, she wouldn't have the stamina. These

Down kids, you know, they're fragile little people.

Many years ago, we got Jillian a bike with training wheels. She used it for

a summer. Then the training wheels came off. For awhile, Jillian's wheels

came off, too. It was like a guy in Nebraska, finding his sea legs.

Jillian, being Jillian, banged into this two-wheeled business with both

feet. And both knees, both elbows and a forehead or two. We spent three

months learning to ride the two-wheeler. It was like cracking a code or

something. Every day, I'd drag poor Jillian out to the driveway we share

with three other houses. I'd help her up, get her started and hold the back

of her seat as she began pedaling.

For a month at least, Jillian ran that bike the way Mike Brown runs the

Bengals. She'd sway and swerve and after about a 2-yard gain, crash.

We made progress, though, mainly because Jillian has a will like an I-beam.

The kid never quit. The amazing thing was, she wasn't doing it so much for

her as for me. She knew how much I wanted her to ride that two-wheeler. She

saw how happy it made me when she managed a few more feet than the day

before. My joy became hers.

Then one day, I pushed and ran alongside and... let go. Jillian kept going,

to the end of the driveway, dread mixed with elation. " Dad, I'm doing it. Oh

my gosh. " She was off and riding. I was in the clouds. The last time Jillian

and I went riding, we did 20 miles on the Loveland Bike Trail.

Don't accept. Expect.

What else did we hear? These kids won't read. Jillian reads at about a

6th-grade level. She's in a book club. These kids aren't good socially.

There are times I wish that were the case. In her elementary school, Jillian

was known as The Mayor. In intermediate school, she was appointed an

ambassador, a 6th-grader charged with showing the rookie 5th-graders around

the building.

Education should be the business of instilling hope. Too often, it isn't. I

don't like being a pioneer. I'm not curing polio. I'm just expecting

teachers to do their jobs. I'm not accepting any less. There are teachers at

Jillian's school now who frown at the mention of my name. And my wife's.

We're a pain in the ass. Other parents have to change diapers. We have to

change minds.

But what a payoff.

Here is what Jillian does. Here is the service she performs, by being her:

She opens my eyes to the wonder of the ordinary. I've enjoyed the little

wins with Jillian I took for granted with her brother: Using a fork,

spelling, times tables, discerning the incredibly vital difference between

homogeneous and heterogeneous mixtures. Actually, for several years, Jillian

has had homework I can't do, making me wonder who's got the syndrome thing

here.

I would never have seen any of this without Jillian's vision. I look forward

to the next generation of milestones: Jillian home alone overnight, Jillian

in her own apartment. Jillian, God help us, learning to drive.

As these kids grow, so do we. We spend less time asking why and more asking

why not. Their limitations are obvious. What's less apparent is how many of

those limitations disappear when we expect better and more, from them and

ourselves. And when we accept nothing less. Their potential is limited only

by our preconceptions.

I remember in the weeks and months after Jillian was born, listening to a

Bruce Springsteen song called Walk Like A Man. One of the lines was, " I was

young and I didn't know what to do, when I saw your best steps stolen away

from you; I'll do what I can. I'll walk like a man. "

I was wrong about that. From the instant she appeared, Jillian has never

lost a step. She doesn't get cheated, to use a baseball term. Jillian gets

her hacks. We quickly got over the immediate emotions surrounding her birth.

Jillian, happily, never got over being Jillian.

I see Jillian with different eyes. I love her with a different part of my

heart. I can't help that. But I don't expect anything less from her. And I

accept nothing less than all she has.

Life doesn't let us in on many secrets. One of them is, happiness comes to

those who do the best with what they have. The more we struggle in our

limited, human way, to make sense of things, the more we see that some

things don't come with sense included. The best we can do is the best we can

do.

It's called Down Syndrome because a guy named Down identified it. It's not

down at all, not for the kids and the teachers and classmates who choose to

embrace them. Certainly not for those of us who are privileged to know them

and love them.

As parents of children with disabilities, we face unusual challenges. But

also, unique opportunity. As we blaze the trails, bend the minds and tweak

the perceptions, we reap the rewards of knowing we've made the world a

better place. We're only as good as the way we treat each other.

It's hard. It's damned hard. But we wouldn't be here today if we didn't

believe, with everything we've got, that it's worth it. Expect, don't

accept. Carry on and thank you again for the privilege of speaking to you

today.

Peace,

D-B

Not Racist

Not Violent

Just No Longer Silent

We shall overcome, and it does not end with me.

With Faith Hope & Charity is the way I take my tea.