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!

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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.

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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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Better late than never, right?

>> Monday, October 02, 2006

Well, to make a long story short, this weekend my three kids were baptised. In the Roman Catholic Church, as in many others, this should have been done shortly after birth. Given my propensity to procrastinate, my geographical distance from family, and quite honestly, my own debates about religion, I wasn't sure when it would happen. But, the fact that Jonah is supposed to make his First Reconciliation and First Holy Communion this year (the former next month!!), I ran out of excuses.

The day was absolutely lovely. My sister, with the same list of excuses, brought her two children, Matthew (12) and Ayla (7) to be baptised as well. My mother would have been so happy -- or perhaps she is. Now, all of her grandchildren have been baptised and have had original sin cleansed away. Archie, in fact, thinks his "meanness" was washed away, LOL, and Jonah had to ask Monsignor Gracz if "his sin went away all at once or if he had to wait a little while for it to happen?" LOL!!

Maren was just delighted by her gorgeous white slip dress -- that matched Ayla's -- and freaked a bit when it was time to have the water poured over her head. As Monsignor said "in the name of the Father, "in the name of the Son, "and in the name of the Holy Spirit" as he poured water on her head" Maren said, "no," stop," and "all done" in unison with him. It was quite funny!

I'll post pics soon, I hope~ but now I must start packing for our Disney vacation. A whole week with my sister and her kids!!! I'm ecstatic, and having cousins around made my kids so happy. Archie even astutely noted that Maren needs a big sister...she adores Ayla. Ah, but that's something I can't do anything about right now :-).

Happy Fall! Carol

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It finally happened

>> Tuesday, September 19, 2006

Archie (nearly 4), stormed down the stairs about 30 minutes after I put him to bed, "Mom, I wish Maren didn't have Down syndrome." My heart sank...how could my baby boy say this about his sister -- Down syndrome is a part of her I'd never want to take away. "Why Archie?" With a disgusted huff and folded arms, he responded, "Because she won't stay out of my room so I can go to sleep." Bahhhhhh! Apparently, for Archie, Down syndrome means "annoying sister activities." Well, I laughed, and explained to Archie that all sisters and brothers annoy one another, and this has nothing to do with T21. Oh, said Archie, "so if I take away Down syndrome Maren would still come in my room?" Yes, Archie, she will still come in your room. And with that, he returned to bed, and moments later I hear the pitter patter of little feet as Maren snuck back to Archie's room to snuggle her brother. Sorry Archie, your stuck with a sister who loves to be with you. Must stink, eh? To be too loved....what a problem he has!

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Maren's First Prom Picture!!

>> Saturday, September 16, 2006



I never went to my prom. I was the girl that just didn't get asked. I had lots of boy "friends" but never a "boyfriend" in high school. So, the possibilty of my daughter not going to prom never seemed like a T21 thing. But, Maren just has the fabulously magical personality -- hence my blog name. And, boys and girls alike seem to gravitate to Maren. At soccer, even, I've had moms and dads come up to me to tell me how much they adore watching her, and some even have told me that they remember her from the dance recitals!! And, really, it's not a T21 pity thing, it's a "that kid just radiates" thing -- but to understand, I guess you'd havae to be there, LOL.

Anyway, RISE is doing a Save the Date Card for a New Year's Fundraising Ball. And, here's the pic from the card -- Maren's first of many prom pictures, I'm sure :-).

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Sick of soccer yet, LOL?

>> Wednesday, September 06, 2006






Well, two weeks in and I'm holding up. I'm having to work on my identity issues a bit...but hey, the kids are having an awesome time and I adore the coaches. Coach Mike is a colleaugue's husband and is simply phenomenal with kids. Each time Maren is supposed to go to a different coach for drills, she somehow winds right back up with Mike...she adores him.

So,here are some shots of the kids, and in particular check out Maren's kick...it's a hoot!

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Labor Day

>> Monday, September 04, 2006


So, it's labor day and what am I doing? Laboring! Yes, that's right. While Jon is out having fun with the kids, I'm in my office working. Taking a quick break, I thought I'd share a pic from this time last year that always brings a smile to my heart!


Roll Tide Roll!!

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Yes, It's true. I'm officially a Soccer Mom.

>> Friday, September 01, 2006

Well, we made it through week 1 of soccer practice. And, quite sheepishly I admit that I rather enjoyed it :-). Jonah is in the 8 and under group, Maren and Archie are in the 6 and under group. The practice times are actually quite fun for the kids. There is no goalie, no scorekeeper, no real competition. The parks and recreation department has set up this soccer league for kids to learn the rules, and to enjoy playing soccer. My kids are having an awesome time, and hence...I am loving it too. I don't have to listen to competitive parents screaming at their children to be more aggressive. I don't have to watch coaches berate children because they kicked the ball too far away from their bodies.

Instead, the young kids play "kick the coach" and try to chase the coach with their balls. They play "chicken nuggets" as they try to learn to change feet on the ball. They play "soccersauraus" as they try to keep the ball away from the coach so he or she doesn't "eat" their ball and walk around with it under his or her shirt. The kids squeal with delight and are learning to play a sport under optimal conditions. Who could ask for more?!

So, then, you ask, how is Maren doing? Well, on Tuesday I'll take some pictures because a picture truly is worth 1,000 words. She's decked in her pink Diadora soccer shoes, pink shin guards, pink shirt, and pink glasses. She's the soccer diva!!! She is loving playing out there and though she certainly isn't the best player -- she isn't the worst - BY FAR, LOL.

And, again, as I watch her play next to Archie who is just so athletic and natural, my heart swells with pride and love admiring them both -- just trying their best to be their best. What mom could ask for more? And, as an added bonus...I get an hour where they aren't bickering...peace!

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Ah, the end of summer.....

>> Wednesday, August 16, 2006





This summer, I resolved to spend less time on the computer and more time with my own work and with the kids. I think I was quite successful given the date of the last blog post :-). Now, back to reality -- and cyberreality, YEAH.

We had a great summer. Jonah tried skiing for the first time and is now begging for a seadoo boat. Dream on Jonah! But, we will find a place to ski more often next summer. He has started second grade and will make his First Holy Communication around Easter. He is about finished DragonRider, and is looking for more great books about dragons, knights, wizards, and intrigue. I'm so blessed to have an avid reader!

Archie (my would rather throw books than read them kid) has learned to read a bit, and has become quite a little man. Archie Baby is long gone. Well, he still has is Archie-isms: pian-e-o, vessert, porcupines (pincones), and volukus (blokus). He's a hoot that kid! All of a sudden, he likes books and adores puzzles. Who would have guessed??

And, Maren, well, that girl just shines. She is reading her sight words, understanding phonics, and loves going FAST in boats. She is starting soccer, in addition to ballet, this fall. So now, I'll have three kids in soccer. A minivan, a soccer mom....UGH.... I promised I would never become THAT mother. Oh Boy!

So, rather than bore you with all the details of summer, I'll share my two favorite pics. The kids sleeping in the hotel, and the kids ready for some skiing action.

Happy School! Carol

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