Groups of Kids with Disablities out in Public?

>> Friday, January 30, 2009

So, I'm wrestling with an issue and this post is more of me talking through that issue than providing any definitive answers.

I'm certainly not in denial that Maren has Trisomy 21. I know it is never going to go away. I know that she will have friends who are typically developing, but that as she grow older, her closest friends will be, and should be, people who share similar interests, passion, values. Heck, I am a social scientist -- we call it homophily.

Yet, I have a horrible feeling in my gut today. The Resource Room teacher at Maren's school, a woman I adore and who really gets IT, took Maren and four other children to a Special Olympics swim meet to cheer teenager with T21 who attends the middle school at Holy Spirit. Permission slips were sent home and Maren really wanted to go. I've known the girl swimming since she was Maren's age. How could I say no? She deserves all the support she can get and I'm thrilled for her! She rocks!

But, I admit I hate the idea of children or adults with disabilities in public together. It makes me shudder when group homes do it; I get angry when ARC does it, and to be honest, I'm thrilled that Special Olympics is moving towards inclusive sports -- maybe now I'll let Maren participate one day ;->.

I believe deeply in inclusion, while acknowledging that we gravitate to people who are similar to us for our closest relationships. Society needs to get out of our stereotypical ways of thinking about disability and forcing segregation. So, from my experience, these group trips, have, I think, the ability to reify the very stereotypes we want so hard to rid the world of -- that demean and degrade individuals with cognitive and intellectual disabilities. I've watched people point, stare, make horrific comments, and even feel pity (UGH!).

Yes, I want Maren to be able to go out with her friends -- just like I did as kid and teen. And, when she's in high school in oh...9 years (ack!), I want them to be able to cruise the theater together. Yet, somehow the "organized" group trips seem so offensive?.!.?

So, I'm going to talk to awesome resource woman -- I don't have the answers-- but I want to share my reservations. Last semester, the kids who use resource services (all with T21) went to a children's theater together. I said nothing then. The feeling is stronger now. So, I'll share my feeling honestly and ask if we can think of ways to make this situation work for everyone. Perhaps each child could bring a friend from class? Maybe a few of us parents can step up and chaperon since the group will be so large?

Perhaps I am a product of the very judgment I'm railing against, but I am uneasy. And right now, perhaps my friends can help me think through this.

With love, Carol being Carol


I found Maren's new theme song.... Little Victories...

>> Sunday, January 18, 2009

...And I love it not just because of my trendy new infatuation with Matt Nathanson, or even that it was featured on Scrubs, but because it is just right on! My job is to help her develop the self confidence to fail, as well as to succeed -- and maybe, just maybe, the world will catch up with her!


This time, I'll be sailing
No more bailing boats for me
I'll be out here on the sea
Just my confidence and me

And I'll be awful sometimes
Weakened to my knees
But I'll learn to get by
On the little victories

This time, I'll have no fear
I'll be standing strong and tall
Turn my back towards them all

And I'll be awful sometimes
Weakened to my knees
I'll learn to get by
And I'll learn to get by
On the little victories
And if the world decides to catch up with me
It's a little victory.

And here is the rest of it.


Fear of the Future

>> Sunday, January 11, 2009

When Maren was first born, it seemed that anyone who wanted to offer well-meaning condolences wrapped in a brown paper package of hope would tell me about the person with T21 that he or she knew from the local grocery mart of discount store. In their own way, those people were trying to allay my fears of Maren's adulthood.

But ironically, her adulthood has never scared me much. I guess I've always had such a dysfunctional extended family that I realized with my genes, there are a whole lot of things worse than an intellectual disability. So -- here I will out myself and my relatives. Depression, Bipolar Disorder, Schizophrenia, Alcoholism, Drug Abuse: All are represented in my immediate extended family.

In fact, my closest brush with fame might be my mother's younger brother Albert. Uncle Albert was a brilliant and budding young scholar with a full-paid scholarship to FSU, and yet, by the late 70s, he was dressed up like Uncle Sam (top hat and all!) and riding a motorcycle cross-country and living anyplace he could find a warm bed. A horrific accident with a deer in Steamboat Springs, CO. and a few more drugs later, and he is known as Leslie Cochran who helps "Keeping Austin Wierd." He can be seen strutting downtown Austin in women's lingerie and high-heeled shoes. Yup. Leslie Cochran is my relative. Down syndrome? Not such a big deal compared to the rough life he leads; though perhaps not a fun either ;-).

So, why all this here, today -- now? I guess I realize that T21 has seemed minor to me because of my frame of reference. Maren has learning disabilities. Others have serious mental illnesses. And, still, Archie my dear six year old...

He wants to be Richard Grieco or Chris Cattan. And, yes, I'm serious. Archie styled his hair quite adeptly tonight and said, "I want to be like Richard Grieco. He's so cool." And there you have it.

Why worry about Maren's job when she grows up? Archie admires guys who wear leather pants and spray on sideburns in Night at the Roxbury. And it doesn't stop there. When we drove down Bourbon Street in NOLA, Archie wanted to go see the naked girls. He thinks beer will taste good. He even tells us he has a Little Captain in Him -- thanks to Capt. Morgan commercials. Ugh. He's going to be a stuntman, and he's already practicing! He has a great sense of humor and an amazing wit. And, yet, I know the teenage years will be rocky and I'll be terrified about getting him through high school, let alone college, without incident. He could hang with the best of Bama Frat Boys!

Somehow, when a parent gets a diagnosis, it's easy to dwell on the could have, should have, would have been, if the child was born a 46er. I find it more productive to look at all of the fears and worries I won't have. I will never worry about Maren becoming an addict. I will never fear her making a fatal mistake of drinking and driving. I will never stay up nights pacing the floor when I know she's out at a party. I won't be trying to explain to a judge why my "child" should be given a second chance after defrauding an elderly person, or taking part in a securities fraud case. Identity theft? Never going to perpetrate that crime either! I have never heard of a person with T21 taking his or her own life, let alone the life of another individual. In fact, I've never heard of any major crime committed by an adult with T21 (unless you are offended, as Dave Hinsburg of Chewing the Fat, was), by an unsolicited hug...bahhh!

And, of course, I hope I will never have those concerns with her brothers. In my hear of hearts, I believe Jonah will become a baseball front-office person, or perhaps an Economist. Archie might actually become a stuntman or rock star, but I'm guessing he'd be a great sales rep and corporate C.E.O. Having his amazing heart, he may even become a special education teacher. Wouldn't shock me in the least!

But, I do not have the same sense of certainty as I have with Maren. So, she will become a teacher's aide, a daycare assistant, a Gap Kids Salesperson, a dance teacher, or if she has her way, the driver of the Barbie Car. And, she'll have a good and fulfilling life, even if it isn't a high-paying, upwardly mobile, divorce-causing, stress-inducing, career that most of us lust after for our own typically developing children. Hell, I won't even be able to brag about her Ivy League degree and 100,000 in student loan debt. Maybe I'll get that satisfaction from my boys ;-).

She'll leave the world a better place because of her presence and leave no harm in her wake. And, in the meantime, I have the pleasure of soaking up the joy that is my daughter.

I have to laugh when people have said, "God doesn't give you anything you can't handle." Huh? have they seen Archie?

And, if they are right, apparently God knew how much laughter and love my heart could hold with Maren. The notion that she is a burden makes me giggle uncontrollably! I've seen my family tree :-) and all the apples that have fallen very, very far from it!


We are such loveable losers, eh?

>> Friday, January 09, 2009

See, even in humiliating defeat (Alabama Sugar Bowl infamy) my kids managed to brighten my day!

And, then Camellia Grill brightened our weekend with a fun and friendly breakfast!

And of course, there is always Cafe DuMonde, Margaritaville, and the Quarter...such a vibrant town.


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