Thursday, September 30, 2010
Tuesday, September 28, 2010
I watch intently as my grandma sits on her vanity bench, carefully applying her makeup. She puckers up as she puts her lipstick on and it makes me giggle. With one hand she gently touches up her hair while she bats her eyes at the mirror. She is beautiful, and I am mesmerized by her. She looks at me and asks if I want some blush for my cheeks. I nod and cuddle close to her while she applies the pink color to my face. I smile and gaze into her hazel eyes.
My grandma and I sing together in the car. We have our own special and favorite songs. She is the only one that never criticizes my singing. I feel so free, so accomplished. I love our car rides together.
Once, my grandmother gets pulled over. The officer approaches the car and my grandmother bats her beautiful eyes at the young officer. He shakes his head with a smile and tells her to “be careful.” He too, has fallen to her charm. I understand, for I am under the same spell and will do anything for her.
My grandmother sings on the stage at one of her recitals. She wears a long, velvety, maroon dress. A grand piano in the background and a full house of spectators, all gathered to hear her sing. She invites me up on stage and I hold on to her leg. I am so proud of her. And she is mine, my grandma.
We sit on her bed, playing “kitchen.” I think she has just as much fun as I do. I forget that she has a weak heart, and that she needs rest. We laugh together, and I offer to put on a play for her. I perform and she claps for me, she tells me it was the best act she has ever seen.
Sitting on a kitchen stool I watch as my grandma separates the yoke from the white. One smooth motion as she cracks the egg and separates its contents. She pours the yoke into a small china cup and dumps a couple of teaspoons of sugar and hands it to me. I enjoy the sweet treat while she continues to bake. Later, we make flour tortillas together. We like to spread butter and sprinkle sugar on them. It is our weekend tradition.
My parents say I am being disobedient. She asks, “Ellen, won’t you do that for me?” I do, I do in a light year second, no questions asks.
I grow up, and find that I cannot stop talking to my grandma about life. I want to know what she thinks, I want her advice. She listens, she asks questions, and then I lay down with her as we watch a Mexican soap. She needs some rest, but her presence is peaceful, comfortable, and familiar. She has always been there for me.
She greets my husband with a hug and a kiss. She tells him “Pero que guapo eres mi chulo!” forgetting Andy understands some Spanish and loving that she calls him handsome. She says she is proud of me, of how I have lived my life. I want her to be proud.
I see her sitting on a chair looking outside her window, watching as birds fly by. A rosary in her hands and her lips moving. I know she woke up early and has been praying for her family, for me, my husband, my girls. She has always prayed.
Today she has closed her eyes for the last time. She celebrated her homecoming in Heaven, the life of the party. I imagine her hazel eyes sparkled as she met Jesus. Her heart, always weak, has now been restored.
But I miss her. Oh how I miss her. I wish you would have met her; you too, would have fallen to her charm.
Monday, September 27, 2010
I will try to post every day, and I really do need some ideas! So join me in celebrating people with Down syndrome!
Sunday, September 26, 2010
Saturday, September 25, 2010
Anyone can participate with an Act of Unity. You don't need to attend or host a big event. Your Act of Unity can be as simple as:
Friday, September 24, 2010
The picture above is Nina with one of her teachers (which I cannot say enough how awesome her teachers are!) they were singing about loving Nina and God making her special (something like that!)
And my big girl Ellie. Both girls are in the same "group." They actually play together very well at school (and sometimes at home)
When my girls are leaders, I like to come to their school for the day. It was so sweet to see how all the kids look after Nina. Nina has one special friend who takes care of her with such tender care! All of kids are wonderful! They make sure Nina has her walker, they pat her gently on the back, they get things for her. A very sweet thing to watch as a mom. My prayer as a mom, is that Nina and Nichole always have friends like that.
Thursday, September 23, 2010
Wednesday, September 22, 2010
Saturday, September 18, 2010
The picture of Ellie and Nichole watching a movie is just cute! At the hotel while we were getting ready for bed the girls were having some down time.
Our biggest group get together was at a restaurant. I have "known" all these ladies since Nichole was a baby as their kids are all older than Nichole.
And here it is all of us moms at the restaurant. I think a few were missing. But what a fun group huh?
One night, we got to go hang out at Braska's house. Jack came over to play too. All three kids enjoyed signing time (I have to say it is pretty sweet to be around a group of people that all sign! Incredible!)
I wrote a post earlier today, so if you did not get to read it, make sure to read Special Needs: They are all so Different.
Friday, September 17, 2010
Thursday, September 16, 2010
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.
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.
We have spent an equal amount of time educating the educators. Don't just look at our daughter. See her.
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.
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.
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.
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.
Expect, don't accept.
Wednesday, September 15, 2010
Thursday, September 9, 2010
I dropped the girls off. I was very anxious about Nina and how she would handle school and the other kids. Fortunately she is in the same class as Ellie and they are in the same small group. It just happened that their group was assigned to the play-doh station. And wouldn't you know it, Nina loves play-doh!