When "normal" is "special"

>> Thursday, August 09, 2007

About 6 1/2 years ago, I was in a hospital bed in Park Ridge, Illinois holding onto to Maren and drinking in her every baby smell and nuzzling my cheek against the fuzz on her little head. I held her and loved her, and tried to imagine what Down syndrome really meant in our lives.

I had visions of Life Goes On, and smiles came to my face. I remembered Corky working at the movie theater, and wondered if Maren would find a job like that. I remembered how hard it was for him when he couldn't drive like his girlfriend, who also had T21, and wondered what would be in her future.

I thought about Special Olympics, and I thought about Special Education. Those were good and happy things in my mind. And, still, they are. But, what I was lacking was a vision of the "non-special" things that Maren would do, as well. I lacked the concepts of everyday life with my Little Miss Magic that would make her life, our lives, more "normal," than different or "special."

Certainly, I never thought that at 6 years old, she'd be on ballet recital number three, or that she'd have a wardrobe and personal style that I would love to have, or that she'd fight with her friends over who got to be "Gabriella and who had to be Sharpay" in High School Musical re-enactments. I never thought that she'd like Pink and Barbie (goodness knows I detest both and swore that I'd never allow either in my house, LOL), and I never imagined that on her first day of kindergarten, she'd be embarrassed to hug me goodbye.

Yes, it's true, Maren has already decided hugging Mom and Dad isn't cool. She won't even blow kisses on school grounds. But, Coach Mike and Mrs. Whitley, and Sister Elaine --- now they get HUGE hugs -- apparently, it's cool to hug them; parents: not so much. UGH. How is that for typical? Jon, my husband, thought surely Maren would kiss him goodbye today. Heck, she even dropped his hand when they approached the door. She wants to be the big girl on campus. And, two days into Kindy, it certainly looks like she is to us.

So, now, I think back on those hours I held Maren and thought of the few "Special" things that I knew about, and realize that nothing is as a special as the normalcy of every day life with my Little Miss Magic. I really wish I would have known then what I know now, that life is life - with or without an extra chromosome. Certainly, there are some differences, but it is all in our focus. I will focus on the beauty and charm. And, here she is, with her handsome brother Jonah who began the third grade!


Surfer girl, ballerina, beautician, biker and birthday girl!

>> Tuesday, June 12, 2007

Wow! I really thought I'd keep up on my blog once school let out, and answer my dear friends' emails (that I've put on hold waiting for real quiet time, LOL), but when free time came -- it became family time. After a year of major trials and tribulations, I finally feel free and happy. And, Jon and I have made time over the last two months just to love our kids and one another. So nice! And, during our retreat from the world, Maren has continued to grow.

She was a beautiful birthday girl, celebrating her sixth birthday in style with a Barbie (yuck!) celebration at home and a High School Musical party with her friends. She got her first real bike (a purple Trek Surfer Girl!) and is riding it so well we are going to try to ditch the training wheels this summer! She painted her own nails for the first time. Okay, truth be told, she painted her fingers, including the nails :-). She lapped up the sun on the beach and loved fighting the waves in SanDestin, Florida.

And, most importantly, Little Miss Magic had her THIRD dance recital. She was a Little Mermaid and danced to Part of Your World. Well, year 1, she did a few twirls and kisses at the end of the routine. Last year, she improved quite a bit, dancing much of the routine and getting a huge round of applause -- even bigger than the first year. Well, this year I had high, high hopes. In fact, as the soloist from the Company performed, rather than have a pit in my stomache that Maren would never be a soloist, I actually wondered what song her solo will be set to when she's a teen! I saw her dancing and beaming, adoring the dance!

Then, several pre-k groups came out and several girls cried. As Part of Your world started, dancers came on the stage one by one. I was giddy with anticipation, and then I saw Marla -- a teacher -- carrying Maren out. She was in tears and holding on for dear life. My heart dropped. I felt so bad that she was so scared.

Then, out came Maren, bouncing with full joy! The crying girl was a friend -- not my Maren. Maren got into position with a big smile, and then, turned to talk to her friend to check on her. Then, without looking for cues, she picked right back up and danced. After a plie and a fairy turn, she comforted her friend, and then sashayed into her circle. She did her perfect Mermaid pose, checked on her friend, did the routine and hit her final pose. She bowed, blew kisses, and brought down the house.

After three years of dance, Maren has learned how to dance, how to memorize a routine, and how to work a crowd. But, more importantly, she has taught me to appreciate those events -- and not to expect them, like so many mothers. In fact, one mom, whose daughter cried during dress rehearsal, kept her daughter off stage altogether rather than risk being "embarrassed" by her daughter during the recital. So pathetic...she'll never get it! Maren's success is all the more sweet because of the effort it took to get there. She couldn't embarrass me if she fell to the stage and bawled. I love Maren not for what she does, but the heart with which she does it.

So, at six, she's riding a bike, starting her 4th year of dance, swimming in the Gulf of Mexico, sneaking kisses from Troy Bolton on television, playing soccer decked in pink from head to toe, preparing for kindergarten at a Catholic School (she loves wearing her brother's shirts around the house). She plays Barbie and High School Musical with her friends (and argues quite skillfully if they won't let her be Gabriella). She is making real friends -- reciprocal friends -- who love and appreciate Maren as much as she loves and assists them. Who could ask for more? And, certainly this is a life worth living!


Reorganzing my mental files

>> Monday, April 30, 2007

Whenever I teach about cognitive schema theory in my undergraduate courses, I use the metaphor of a filing cabinet and tell students that schema are our filing cabinets and prototypes, stereotypes, and constructs are our file folders that help us organize our information. As detrimental as stereotypes might seem, they are often simply "necessary" to organize information -- stereotypes allow us to predict the actions, thoughts, skills, etc. of another based on their "group."

We need to know professors will come to class and teach, that firefighters will rescue us from burning buildings and that friends will provide us with support when we are down. Yet, stereotypes and their related schema are dangerous when we fail to question those categories when they take on a valence, either positive or negative.

So, what does that have to do with disability, particularly Trisomy 21? Ah, good question and though it is 2 am and I'm exhausted, I'll attempt to make a coherent connection. :-). We tend to think of stereotypes as "bad" yet the cognitive process, is by itself, "normal" and needed to make sense of our world. Yet, sometimes, we need to think about how "good" stereotypes can be just as harmful as "bad" ones.

Here is where I get controversial -- be prepared. What are angels? Well, for one, they are dead people -- or created without physical form to begin with. And, second, they are somehow closer to God than mere mortals, in Chrisitian beliefs. So, with all the talk that individuals of children with T21 and other disabilities, particularly cognitive, do about having their children included as part of everyday society, as part of everyday life, as part of "normal" with difficulties, it seems to me to be counterproductive to "deify" the very children we want to be seen as "fully included."

Deities are important, but angels are still not part of everyday life, in public schools, on soccer fields, and in dance recitals. Angels are "above" mortals, perhaps watching over us. Perhaps protecting us. Perhaps showing us grace. But, they are not a visible part of everday life.

I'm afraid that as advocates and parents of children with disabilities, we need to be careful of our attempts at image making for our children. If we truly practice unconditional love and want full inclusion, why do we fear saying, "my child learns more slowly than yours," "my child is not very athletic," "my child has a cognitive disability" without feeling the need to wrap it in a "blessing" or deification.

If we really want equality for all people with disabilities, I think we need to embrace all that is different as okay. It is okay that my child will never get a Ph.D. It is okay that my child will never be a graceful ballerina. It is okay that my child may never speak clearly or perhaps walk -- even talk. Why? Because he or she is a "gift" or a "blessing?" A "message from God" -- or an Angel?

No, it's okay because each and every person is inherently valuable -- brilliant or delayed, athletic or immobile, attractive or homely, loquacious or silent. At this late hour, I can't help but think of the student who turns in a paper with the preface, "I know it's not my best, but please consider my effort. I worked hard," as if I can grade effort -- and should. The student "wraps" the paper before I ever read it, and after that presentation, I can't help it, I look at the paper differently. And, sadly, I generally look for the faults the student has acknowledged.

I say it's time to say, typical is just that -- "typical." It is not better or worse. Let's stop trying to wrap disability as a blessing in disguise, a divine gift, an angel in action, or even, a secret we know that others don't. Now, in our hearts, we might be thinking, "of course we know we struck it rich," but that language -- those thoughts that we convey to others, might simply set us, and more importantly, our children apart from others rather than work for inclusion.

It's easier to include a child with significant learning disabilities in a kindergarten class than it is to teach an angelic being whose purpose is to show others grace and teach tolerance and acceptance. Heck, if someone is already an angel, why waste our efforts on worldy pursuits anyway?? Like any human being, all children with T21 are different -- images that convey a unified appeal or message decreases the individuality and increases the ability to separate and stereotype further.

And, though I certainly don't want to "go there" right now, angel imagery and "so loving" imagery makes it easy for some potential parents to "give an angel his wings," "not punish such a loving soul," and even "return a gift." It's much harder to say, "I don't like children with IQ's below 75, or I can't handle a child who won't talk until he is 2 or 3, even later." One focuses on the stereotypes, the other forces people to take responsibility for individual interpretations and expecations.

And, while, I'm on my reorganizing -- declutting of files, rearrangement of mental paperwork, and dusting of the cognitive cobwebs, I also think of the fact that we, even as parents of children with disabilities, are so eager to use words like "high functioning," and "low functioning" even as we say those words are offensive, point to our own need to categorize. Though dealing with indivdual papers may seem more cluttered than neatly labeled file folders, perhaps we need to "deorganize" and make things messier!

Rather than saying "I hate the term, but other's see child X as high functioning," why not just say, "Child X has strengths in verbal and fine motor skills?" All high functioning really means is "more normal appearing" to others. UGH. Those generalizations are useless. Certainly they are neat and tidy, but oh what they miss............ And, they serve only to divide the already marginalized.

Parents who have children who walk after a particular time, or who stay nonverbal, or use assistive technology, must deal with the further isolation of having a child who is "low functioning;" read: not as good as a "high functioning" child. Yet, in all reality, all children with disabilities are seen as "different in the same" way from the abled others. And, conversely, parents who have children who excel in some areas might hide achievement for fear of alienating those whose children do have greater weaknesses. Ah,,,,,it never ends. But, we can make steps by talking in specific ways, in specific domains, rather than in global terms.

I'll come back and edit for grammar, spelling, and offensiveness when I'm more awake :-).

May you choose to disagree -- to find my post outrageous --- that is okay. As we work to end disabilism from outside, I think we need to look internally to see what it is that we do to contribute to the ongoing bias. And, if you come to a different conclusion, GREAT -- let's start a real dialogue!


Will the real princess please stand up?

>> Thursday, April 12, 2007

Ah, Maren met her favorite princess. But, before she could get to Snow White, we had to see Belle and Cinderella. Though they both finally got a smile from her, she quite bluntly told each of them, "Not you. I love Snow White." When Belle asked her, "Don't you like my movie?" Maren said, "No, I like Snow White and the Dwarfs." Well, there you have it -- a girl not afraid to stand up for herself -- or perhaps a princess in preparation for Mean Girls II, LOL.


Grand Family Fun

>> Friday, March 16, 2007

Hi all! Yes, I've been horrible about staying current with my blog. Switching back to dial-up to save$$ makes this a bit harder :-). But, right now I'm sitting at my sister Darby's house (the brunette in all the pics with her husband, Brent) and decided to share some pics from our Out West Excursion.

As you can see, we went to the South Rim of the Grand Canyon, went boating on Lake Powell, and even hit the Caesar's Palace FAO Schwartz Toy Store and the Margaritaville (home to our Little Miss Magic's song-sake) after our flight into Las Vegas!

These extra 2 cuties in the pics are my sister's kids, Ayla (8) and Matthew (12). My kids adore their cousins and are heartbroken that we are leaving in the morning -- back to Alabama -- and school :-).


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