All Jellybeans are Alike and Different

>> Tuesday, October 02, 2012

I never blog these days. I seem to get busy with work, and sports, and laundry, and work, and loving my kids and more laundry.  But, it is time to share my heart yet again.

Maren is thriving in 5th grade. Her math skills are soaring and her reading blows me away. I love hearing her read every sign we pass, and the novelty of that just doesn't wear off. I grin when she wants to read the entire menu at Cheesecake Factory before she orders (15 or so pages), and the server can just wait while she does it (and I know he or she will be well compensated for his or her patience). Lately, she reads me bedtime stories instead of the other way around.

I delight in the things that might otherwise frustrate or annoy other parents. Maren has truly taught me to appreciate the small things and follow my bliss. So, when she ordered Papa John's a few weeks ago, I reveled in her amazing self-help skills, and when I see her basket full of purchases at Amazon, I'm grateful I removed my credit card number from their files :-).  I let her pay at grocery stores and if she holds up the line a bit while she remembers the pin to my debit card or counts the change, so be it.

But, last weekend, I learned something amazing -- the lessons Maren teaches aren't just for me.  She and her brother,Archie, were in a local production called The Jellybean Conspiracy, which brought together people with special needs and typically developing individuals.  The first night of rehearsal, a man with Down syndrome asked me to take a picture of him and Archie. I didn't think much about it, but I did so happily.

Within days, Chris (the adult with DS), and Archie formed an incredible bond. They hung out during practices, talked, and worked on their dances together. By the time the show rolled around, they were inseparable. When Archie was on stage, Chris waited in the wings. When they were on stage at the same time, they were together. When Chris had snacks, he shared them with Archie. They talked about music, games, and Alabama football. And, when I asked Archie how he felt about Chris having Down syndrome and being considerably older than he is, he looked at me with an "are you kidding, lady" look. He said, "Mom. I like Chris and he is my friend. We have a lot in common." Of course, I couldn't just leave well-enough alone and I prodded, "Archie, you do know Chris is 35, right?" Disgusted with me Archie replied, "He is my friend and I don't care how old he is. We have fun together."

Well there you have it. He sees Chris as Chris, just as he sees Maren as Maren. He doesn't care about their label or their disability. Though he may be mad when Maren gets away with ordering pizza, and get annoyed that she always gets to run the debit card and hold they money, he gets IT -- the big IT --the IT most of us will never really get because we are so busy trying to label other people and force them to fit into our socially constructed boxes. He can see past the categories and preconceived notions. He is everything I am striving to be. And, for him, it just comes naturally.

They say your children are part of your heart, but somehow Archie's is already bigger than mine, and I can only hope that mine will continue to grow to accommodate all the love and acceptance he holds in his.  I guess he deserves to order a pizza now and again, too.  :-).


Great beginning chapter books for girly girls!

>> Monday, October 03, 2011

Lately I have had several people ask me about Maren's reading skills. She loves to read and keep up with what is cool with her peers. So, she'll check out the iCarly and Justin Bieber books, not to mention Fly Guy and Captain Underpants. She'll even come home with Babysitter Club books. And, I'm THRILLED because she can read them all!

Now, the more difficult chapter books she cannot read from start to finish. We co-read them; that is, she'll read a page, and then I'll read a few pages. I have watched her phonics skills grow by leaps and bounds when she is reading the "cool" books. But, when it comes to her Accelerated Reader tests, she has some problems with the longer books. The AR tests often have inferential questions that she will miss, or ask for details that didn't stick with her as important. So, we try to choose books she can do well on for her AR tests. Her higher scores boost her confidence and keep her motivated to read a variety of material. Sometimes, that means she is test on easy, easy books (like 10 page books about Frogs, or Police Officers).

So, what easy chapter books make for good reads for Maren -- ones that she wants to and can read independently, yet retain enough to take AR tests on and pass (fingers crossed)?! Well, to begin, the Mercy Watson series is fantastic. The stories are funny and the details are presented in memorable ways (like Mercy the pig loves buttered toast!). The stories are ones she can tackle all on her own and take the test with confidence. The stories keep her grinning from ear to ear. Kate DiCamillo, the author, has a few other wonderful chapter books that an early chapter book reader can tackle with confidence, like Cowgirl Kate and Cocoa stories. These stories are charming, and like Mercy Watson, don't overwhelm Maren with Details. Bink and Gollie have been great because they push her inferential skills just a bit further than they are because the books often require inferential leaps and an understanding of basic irony.

Of course, Kate DiCamillo isn't the only author of good entry-level, girl-oriented chapter books. Maren has also adored Amelia Bedelia, a little girl who takes everything literally! Again, these books have helped build Maren's inferential skills as she realizes the humor in how Amelia responds to the world! Oh, and Ivy and Bean by Annie Barrows wonderfully engaging best friends who have a fabulous fashion sense! So, if your child isn't enthralled by Frog and Toad, and Mr. Putter and Tabby, or even the Magic Treehouse or Schoolbus, keep looking. There are some great girl reads ready to motivate your girl! Now, Maren is loving Judy Moody and with a little help, she can make it all the way through in a few days! She can tell me all about the book and the big details, but AR tests? Not ready for those yet!

Do you have favorite books for your child? Chapter books, read-alouds, co-readers? Easy readers? Challenging readers? Let's share!


The power of persuasive appeals: lessons from a 10 year master manipulator

>> Sunday, October 02, 2011

Little Miss Magic has always gotten what she wants. Truth be told, she rarely hears the word "no." Part of that is that she is the middle child and only girl, and the other part is that she is just so darned cute and funny! We hate saying "no," and when we do, she puts on the saddest face you have ever seen...and her tears are so genuine, until a few seconds later when she hears "Yes," and starts to giggle. Then, I realize I have been taken for the 9000th time! Here's the face that breaks my heart! Photobucket

Lately, she's gotten a bit snotty and has begun rubbing manipulation skills into her brothers face with the standard, "Ha, I got x and you didn't." When we have caught her, we have realized that she is getting obnoxious -- but in such a cute way ;-). Regardless, we have decided to try "no," and "wait," just a little more often, even if it hurts me more than her. She's gotten the hint, and is learning her tears don't always work.

Well, she wants her room painted a pale purpleish blue. We bought paint at Sherwin Williams 40% off sale two weeks ago. Oh, is she getting impatient!!!! But, after asking and sobbing, and realizing that "when we get time," means "your tears don't work," she wised-up and stopped the daily pestering.

This morning, she walked into our room in full Little Miss Magic mode, chipper and cute, funny and affectionate. Oh she was turning it on. Then, she turned and said, "Am I a hero?" Why Maren, do you think you are a hero? She replied, "Yesterday, I caught the dogs by myself." Ah, she is right. The dogs pushed through an open window and while we were frantically looking in the woods behind our home, Maren spotted them down the street. She somehow got ahold of their collars and waited until Jon emerged from the woods and called to him. He went and grabbed the 70 pound jailbreakers :-).So, yes Maren, you ARE a HERO!

Well, we should have known...her follow up was, "I am hero. I saved Cubby and Tiki. Can we a big breakfast?" Simple enough request, it is a Sunday. So sure! "Can I go watch TV?" Again, it this weekend, so no problem. "Can I vacuum my room?" Wow, girl, go right are so grown-up!

Then, she finishes us off: lowers the bomb. "Today can we paint my room?" She had us. She gave us a reason to congratulate her, asked us a series of yes questions, the came in for the kill; she used the foot-in-the door persuasion tactic! And, of course, we caved.

Today, her room will be a lovely shade of light purpleish/blue!


31 for 21 begins! AKA Creating equality through friendship.

>> Saturday, October 01, 2011

Lately life has been in high-speed and I have failed to post much in the past year or two. Truthfully, our daily life with three kids seems to focus very little on our daughter's extra chromosome. As she gets older, it gets so easy just to see her as Maren, a girl who loves iCarly, playing with her two dogs, drinking from the OJ jug (gross!), blasting Katy Perry and Justin Bieber tunes, and obsessing over her wardrobe and matching headbands! She is 10. Oh boy, is she ever a tweener!

But, then there are moments when I stop and get teary-eyed. Those moments when I realize that Maren is such a typical girl because of her friends who see her as a typical girl -- who include her in their gossip and girl-chatter -- who sit with her at lunch and invite her to their parties. These girls don't hang out with Miss Magic because they have been forced to by well-meaning adults, nor because they have been shamed into by teachers or administrators. At their age, they haven't decided to sign-up to be a buddy for her because it would look good on their college applications.

They chill with Maren because they genuinely like her; they enjoy her company. Sure, they know she is different in some ways, but they see the "more alike." Why? These girls are popular girls, truthfully, the kind I never hung out with as a child. I have lots of ideas and it is probably a combination of all of them: the girls come from good homes where there parents have always valued individuality and don't speak ill of others based on superficial differences; they go to churches or community organizations that focus on what being a good person really means; they have been in inclusive settings since they began school and don't see disability as foreign; and when they have questions about difference, they can ask them and get honest and heartfelt answers.

These girls just "get it," and when they are old enough for Camp PALS or Best Buddies, chances are, they will embrace them. They won't see it as resume fodder or a compulsory activity. I believe in my heart of hearts they will join because they know the value of friendship and respect, and understand that it goes both ways in a relationship. Archbishop of Canterbury Rowan D. Williams is quoted as saying, Friendship is something that creates equality and mutuality, not a reward for finding equality or a way of intensifying existing mutuality."

To the kids who develop friendships with children with Down syndrome and other special needs, you are creating equality! And, to the parents who raise children who can see the friendship potential in all children, thank you for making our journey so beautiful.

Now, in honor of DS Awareness month, I'm going to try to blog more regularly as part of the 31 for 21 challenge! I'll talk about the daily life of my Little Miss Magic...and anything else I can think of to honor this wonderful month!


Maren, her boys, and Flex Luthor

>> Saturday, July 30, 2011

Just a short post...not so much about Maren, but about her new "limo;" she needs to be driven in style, you know ;-).

After driving myself bonkers looking for the perfect vehicle for us, I finally jumped into the Ford Flex, and here is Flex Luthor -- his name just fits him (his bald head, and our wonky family!). And, each kid has enough outlets and ports to run his or her own DS, ipad or ipod....ahh....peace at least!


A few recital pics

>> Tuesday, June 22, 2010

So many things have kept us busy lately. Maren wrapped up 2nd grade in style and turned 9 in May! Archie is done with 1st grade, and Jonah is heading into 6th. How did that happen?

The boys both made the YMCA's All Star baseball teams for their age groups and had a great time, though they both got creamed in the first round of the playoffs :-(.

And, Maren had her 6th Dance Recital! A busy few months we've had around here.


I was not chosen; she is not "special;" and she is certainly no angel!

>> Sunday, February 28, 2010

Tonight I was leaving Publix (a Southern grocery store) and a the face of a gorgeous young boy grabbed my attention from the cover of a magazine. But, my immediate thought was "ugh!"

Why? Well, two weeks ago I picked up a Birmingham Parent Magazine and inside saw they had a cover model contest. Cool, eh? But, they showed a winner from a few age groups and then a "special needs" category winner. What a blow to my gut? Hey all you people with Special Kids -- they aren't cute enough to win a "real" contest, so let's tokenize them and throw y'all a bone -- a category of your own.

Now, I know some of you can't believe I'm saying this and think it is just great! I'm not buying it. I'm angry that as I fight for inclusion, children with special needs are being excluded everywhere I look. And, here's the rub, if you don't think Miss Magic is cute enough to win a contest, don't pick her! Just like you probably wouldn't pick 2 million other kids whose eyes are big enough, whose lips aren't full enough, whose skin isn't creamy enough, etc. Just don't patronize me but adding a special category for kids "like" her and call it "special needs" when we all know you mean "visible disabilities that may detract from typical expectations of attractiveness." Certainly, a child with autism wouldn't have one that category because you couldn't see his or her disability!

So, back to tonight (breathe Carol, breathe). The little boy who one the special needs category is now the cover model for Birimingham Parent, and across his chest are the printed words, "Chosen to Love A Special Child."

Dear Parents: at some point, I know we have all wrestled with the WHY question. Some of us find our answer in biology, some in God, some in the fates. But, we have to remember there is a world out there forming opinions of our children's rights to participate in this society based on how we frame them. Saying you are "chosen," indicates others are not. It gives them an "out." They can sit back and think "I wasn't chosen, so why should I be bothered by you and your child, who were."

And, while I'm on the language issue, let me let you in on a little secret. My child with T21 is not an "angel," another metaphor I find haunting, creepy and downright unproductive. How can your child be included if people are in the midst of someone divine and holy? A friend of mine talks about "discrimination through deification," in a completely different context. I think it works quite well here, too.

Let's get real:

* My child has additional resources needs; given the proper supports, they can be met.

* My child does not have the natural ability to be a professional dancer; neither do 99.5% of the other kids in her dance studio, so leave her with her peers!

* My child will have a few more melt downs than most; big deal -- put on your big people pants and practice your best parenting/teaching skills.

* My child will have areas of relative strengths and weakness; so will any child.

See her as "special" or an "angel, " or as in need of her own groups (even beauty contests!) -- and she'll always be excluded. It is time to admit that my daughter has delays in comparison with the typical child. YUP. Some biggies too. I'm not ashamed to say she has significant cognitive impairments. I refuse to wrap it in pretty bows or lovely labels to make other people feel better. All children are different. There would be no typical if atypical did not exist. Typical doesn't mean right, good, or better. Goodness know, with my college students, the biggest insult I could hurl at them would be that they are gasp -- average!

Let's pull together and stop defining disability in terms of ability and creating new standards and categories. Let's take each disability for what it is -- an interrelated set of issues that require different accommodations than your typical child.

Different you say...not just "accommodations?" Different accommodations. Children who are "typical" get the "accommodation" of pencil and paper. Children who are nonverbal get the "accommodation" of PECS. Children who are sighted get the "accommodation" of lights; children who have hearing impairments get the "accommodation" of sign language.

We all get accommodations -- we just see them as rights. We don't need new categories for everything; we just need to stop judging everything that is "typical" as "right" and "good."

End of my rant . . . and perhaps tomorrow I will see things differently. For now, though, I feel a bit sad that for as far as people want to say we have come, we still have an awfully long way to go.


Pinky Swear and "real" swears...sigh...

>> Wednesday, January 27, 2010

All of a sudden, telling Maren that we'll do yoga together on Monday night after school, or that we'll make pizza together on Tuesday just isn't good enough. I guess I've broken too many promises to the Princess. So, now, when I tell her we'll do something, she makes me Pinky Swear.

Great and cute, right? YES. Until on Tuesday I can't find the yeast and tell her we'll have to have spaghetti instead.

"DAMN!" comes flying out of her mouth.

Should we Pinky Swear to stop swearing?

The life of an 8 year old going on 18!


And back to Bama we go....Roll TIde...

>> Friday, December 11, 2009

I haven't posted this semester because my heart has been torn. I adore living back in a city! Growing up in Miami, Salt Lake, Las Vegas, and Orlando, small towns have never sat well with me, so of course for college and grad school it was Chicago, Miami, and Boston -- then GASP -- Lafayette, IN. I kept telling myself it was only for 5 years and I could make it through that.

So, when we moved to Tuscaloosa for Maren to go to RISE, I kept telling myself, "It's only for 3 years." Then, I found out I really loved UA -- and the Tuscaloosa community is great (see ALL OTHER POSTS, LOL). But, it is still a small college town, and I'm a big city girl.

But, alas, I'm a mom first and foremost, and sometimes it means making choices that are best for my kids. So, back to our old house we go (luckily? it hasn't sold yet!). Jonah is devastated because he has learned more this year than ever, and he's had an amazing time. His teacher is involved, creative, passionate, and he comes home and actually has an answer to the tired question, "What did you do today?"

Archie has tons of friends and birthday parties, and a great trio of teachers, too. He's gotten addicted to Bakugan (UGH!), and is really developing a great little "cool kid" personality he certainly didn't get from HannahMOMtana, LOL.

And, Maren loves, loves, loves her teachers and friends --- has a cute crush on little boy Isaiah, and has picked up on the Littlest Pet Shop toys, and even got to go to the Nutcracker with her class this week. She has really adjusted well. But, after this year, we'd be forced to homeschool Maren -- and take her away from her friends and classmates. If any of you know Maren - that would be devastating! Here, an IQ test is required for services, and that is just one point this mom won't back down on. So, our options are homeschool -- or just move back to Alabama -- where I have a career I love and an already established community. And, Jon can commute -- and I'll just dig in and learn to embrace college town life.



So long, So many changes -- a move, a new school, a flood

>> Wednesday, September 23, 2009

In a 4 month nutshell, Jon got a job in the Altanta area on July 1 and on July 15th, we were moving in to a new home in Cobb County, Ga. And, lucky me -- I commute 3.25 hours each way to work -- but only 2 days a week. And, truthfully, I don't mind it. In the big scheme of things, I'm in the car less than many daily Atlanta area commuters :-). Our master bedroom got some minor flooding in this Atlanta flood -- yeah for renting!

The kids are in a new school and loving it. There are 850 kids, which freaked me out, but it has a great feel, and of course, within the week, as soon as we pulled up, kids and teachers alike were saying "Hi Maren," "What's up Maren," "Hey Maren, want to come play." In fact, Archie and Jonah think it is hysterical that everyone knows Maren, and only their classmates know them! Luckily, they take it in stride and see having Maren as a sister an honor, not a detractor! They like the perks they get from her popularity.

Maren started ballet and tap at a studio close to our house, and she loves her new tap shoes. UGH. I do not...but she's a pretty good Happy Feet kid! Jazz is on hold for now -- we can only do so much :-).

Worst thing about the move...well, now it is not "Can we go to Outback?" me: "no." "How about Chili's?" me: "no."

Now it is, "Can we eat at Bucca Da Beppo?" me: "not tonight."
"Can we got to Dave and Busters?" me: "Of course not, and don't ask about ESPN Zone either Maren."
"How about Blue Moon Pizza?" me: "um, no. we are eating at home."
"I like Tijuana Joe's." me :::::: silence and an eye roll.
"How 'bout Willy's?" me: "Maren, I said no!"
"Okay, I'll go to Fuddruckers." me: "For the last time. I said no. We are eating at home." "Fine...... I'll just go to Chili's." Sigh....

And, then, as she eats the dinner I have prepared -- "Tomorrow I go to the zoo." And, yes, like Finnegans Wake, we begin again!


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