Lovely and Amazing

A Magical Birthday Party for a Lovely Little Girl...

2009-02-18T09:35:00.005-06:00

Well, if I say so myself, somebody had a most spectacular birthday bonanza!

I am still tired from the five year old ruckus.

Which is probably a good sign.

There were children, presents and juice boxes a plenty! Did I mention the magician who must specialize in preschoolers because wowza, did he have them wrapped around his rabbit hat. He brought tricks and glee, balloon animals and face painting for all to see!

And Miss E? Well, she was as entranced as could be.

And, somehow, the meltdowns were kept to a low roar as the dattacked Uncle Chicken Legs and swung from his body like a scene from Lord of the Flies, until he had to flee.

Come and see...

So, in short, I am thinking I am pretty darn SupaCool right now. Yeppers, I'm diggin' myself quite a bit in the afterglow of a well planned par-ty.

And I hope my not so little babe is too.

Hopefully this will make up for the notable lack of a 4 year old birthday party. Note to potential invitees - it is now official: there will be no 4 year old birthday party; we've moved on.

I plan on telling her that it was amazing, but all the pictures and video were destroyed in a horrible fire.

So, if she ever asks, it was fantabulous. You were there. So were circus clowns and an inflatable bouncy house. She had the bestest time eva (or at least until her 5th birthday party). You are still grateful you were invited, and you'll never forget it.

It's a CyberParty!

2009-02-13T10:42:00.010-06:00

Hello my beloved Blogland,

Won't you join me in celebrating Lil' Miss E's one and only 5th birthday today? As far as I am concerned, it is one of the two best days in all of the world, and I hope the magic of today touches you as much as me and mine.

Five years ago today...exactly.

A mere Five weeks later she was already a star...

And this is who she has grown into.

I couldn't be prouder.

Not one bit.

Baby, this is for you.

I love you sweepie.

Fantastic Forecast for the Frugal: Freaky Friday is Still Free!

2009-02-06T08:49:00.009-06:00

Spend less. Laugh more.

Feel better yet?

A Very Sheepish " Hey Now"...

2009-01-27T07:56:00.014-06:00

So. It's been a while. Yessiree, indeed my last post featured the pumpkins of yesteryear's holidays.

Obviously, I have the attention span of a fruit fly. Maybe I should turn the blogging over the little Miss E; she is far more focused than her older and less wise mama.

But, as always, go forward basis...

The kidlets are a ruckus and, as always, life has a pace that is difficult to keep up with. The clock marches on with absolutely no regard for my wants and needs; self centered Father Time that he is. Except when it is -22 degrees out. Then his butt is slow as molasses...if only my typing fingers could thaw enough to get down to blogging bidness.

We are nearing the Kindergarten enrollment deadline for Miss E, which has left us in a bit of a pickle deciding what is the best placement for my girl of a thousand giggles. We are throwing around the idea of having her repeat preschool, an idea that the district doesn't support at all, but, which after countless emails, arguments, and official type meetings, we have gotten her team to stand solidly behind us. We have struggled with her placement as our district refuses to offer a full inclusion program so we are now drinking from every glass we can find, and have been pleasantly surprised and completely gratified to turn around and find her team standing next to us in complete support for all of our choices. The deadline creeps ever forward and on February 28, our placement cards must be in.

As of today we have applied for a full inclusion charter school, have a card in reserving another year of preschool (much to the chagrin of the Early Childhood Special Education budget) in her current classroom, and are deciding which public school to submit on our final card.

We will see where the cards fall...

In my quest to secure the best possible education for Miss E, I have been appointed to the Special Education Advisory Council for our district, which is a parent advocacy group comprised of parents and special education staff. At my first meeting I was able to whine extensively at the director of Special Education who handles a student population of over 8,000 students, and wowza, did that feel good.

Gabers is into everything and has turned into quite the Chatty Kathy. Of course he sounds a bit like the Kathy who overstayed her welcome at happy hour, but every day I understand more of what he is telling me. Maybe if I start drinking in the evenings, I'll understand it all. Thank the gods he is, as is Emma, patient with us, and isn't hurting us to much for saying "What? Your what hurts? You want to be an airplane? Oh, Elmo. Okay."

If only there was a sign for Elmo...

Scratch that. I grow to hate Elmo. And his world.

Except we did go to Sesame Street Live with the preschool posse again this year, and as always, it was wonderful. The production was an 8 on the tree hugging scale and included a techno song and dance about moving trash. Gotta love it!

And where is Miss E you might wonder? Why she was doing her best Lord of the Flies impression and forced Pinko Grammy into an impromptu game of "Get Away".

It was Gabe's first SSL, and he vibrated the entire time. When he wasn't begging people for food.

"Is that pizza? Can I have some? I've never eaten before and my mommy keeps me locked in the basement. Without pizza."

This one pretty much says it all, no?

And, as this was what my weekend was all about, I'll leave you fine Blogland, with this image (which is now burned into my head and starting to give me anxiety attacks).

Taken via my new fancy pants touch screen yet oh so free phone!

So my dear friend, B, your friendly reminder was received and noted.

I'm back.

How do you like me now?

Finding Our Great Pumpkin

2008-10-14T08:04:00.020-05:00

This weekend marked The Fantastic Four's second annual pumpkin patch and apple orchard extravaganza. In the midst of the swarming bees, crabby cries, and plentiful hay, fun was had by all. Even though some mommies are thinking about bringing a hip flask next year to help dull the pain of the infamous "my child is havinga melt down" embarrassment. Of course that wouldn't be me. Nope. Not ever. I love it when my children scream at me.

But I digress. I know, you are shocked...

Country life at four dollars a pop.

Searching for the Great Pumpkin

Group photograph.

Yes, this is seriously the best I could do.

See how all four heads are pictured?

Yay me!

Hayride

And finish with my two hour meandering escape back to our urban abode. We only made it back thanks to Pinko Grammy's cell phone, quick mapping skills, and ability to not panic while her very adult (legally at least) daughter threw a temper tantrum that would make Gabe the Babe proud.

Thanks PG. When in doubt know that I am always striving for a kinder, gentler me, but next year, you are so coming with.

Freaky Friday Gets Schooled

2008-10-10T11:01:00.002-05:00

And not very well might I add.

Clicky click to reveal all its' glory...

And again, Clicky click to supersize. It's worth it. trust me.

But, it gets better.

Seriously.

It's first period and where are your children today?

Hopefully not in Albuquerque.

The following is a partial list of actual written excuses given to
teachers in the Albuquerque Public School System by parents:

Please excuse Dianne from being absent yesterday. She was in bed with gramps.
Please excuse Johnnie for being. It was his father's fault.
Chris will not be in school because he has an acre in his side.
John has been absent because he had two teeth taken off his face.
Excuse Gloria. She has been under the doctor.
Lillie was absent from school yesterday because she had a going over.
My son is under the doctor's care and should not take fizical ed. Please execute him.
Carlos was absent yesterday because he was playing football. He was hit in the growing part.
Please excuse Joyce from P.E. for a few days. Yesterday she fell off a tree and misplaced her hip.
Please excuse Ray Friday from school. He has very loose vowels.
Please excuse Blanche from jim today. She is administrating.
Ralph was absent yesterday because he had a sore trout.
Please excuse Sara for being absent. She was sick and I had her shot.
Please excuse Lupe. She is having problems with her ovals.
Please excuse Pedro from being absent yesterday. He had diah(*crossed out*), diahoah(*crossed out*), dyah(*crossed out*) the sh**ts

Methinks the Albuquerque Public School System may have a slightly larger problem than just truancy if they believe these notes were written by the hand of a parent.

Giggle.

Getting it Down: 31 for 21

2008-10-07T14:29:00.003-05:00

As always I'm the last belle to arrive at the ball, but I've brought my dancing shoes and am planning on Getting it Down for the next 24 days. We'll just have to see how that goes for me, my lil' toes o' weariness, and my toddler sized attention span. But, I do purport to have the highest of aspirations.

For those of you that are also late bloomers (gotta love my sistas), this is the second annual 31 for 21 challenge hosted by Tricia at Unringing the Bell. She is providing all of us challenge takers inspiration, support, and a shiny new button! Who doesn't want a shiny new button?

So Blogland, let's Get it Down!

Note to Self - that means you.

WonderShoes

2008-10-07T12:06:00.003-05:00

Lil' Miss E has laced up her ballet shoes for her second round of dance class and, as of yet, is thrilled to be back in the studio. It has been more than a year since her last session, one of fun filled wileyness and mirror inspired antics, but one that wasn't as group centered as some mothers would have prefered. And by some mothers, I mean this one.

Two classes in and it appears as though she is definitely making an effort to use her listening ears and stay with the group. Or so she says...

And, for me, cuteness overload has begun again.

The Sun Shines Again...

2008-10-07T10:31:00.005-05:00

The Fool wakes at dawn from his long, restless night to find that the wild river has, at last, come to an end, quietly floating him into a serene pool. There is a walled garden around this pond dominated by roses, lilies and splendid, nodding sunflowers. Stepping ashore, he watches the Sun rise overhead, bright and golden. The day is clear. A child's laughter attracts his attention and he sees a little boy ride a small white pony into the garden.

"Come!" says the little boy, leaping off the horse and running up to him. "Come see!" And the child proceeds to take the Fool's hand and enthusiastically point out all manner of things, the busy insects in the grass, the seeds and petals on the sunflowers, the way the light sparkles on the pond. He asks questions of the Fool, simple but profound ones, like "Why is the sky blue?" He sings songs, and plays games with the Fool.

At one point the Fool stops, blinking up at the Sun so large and golden overhead, and he finds himself smiling, wider and brighter than he has in a very long time. Since he started on this spiritual journey, he has been tested and tried, confused and scared, dismayed and amazed. But this is the first time that he has been simply and purely happy. His mind feels illuminated, his soul light and bright as a sunbeam. Like the great Sun itself, this child with his simple questions, games and songs, has helped the Fool see the world and himself anew, to wonder at and appreciate both. "Who are you?" the Fool asks the child at last. The child smiles at this and seems to shine. And then he grows brighter and brighter until he turns into pure sunlight. "I'm You," the boy's voice says throughout the garden, "The new you." And as the words fill the Fool with warmth and energy, he comes to realize that this garden, the sun above, the child, all exist within him. He has just met his own inner light.

- From The Aeclectic Tarot

I wanted to take a moment to thank all of you that reached out to comfort me while the clouds gathered in my head. The ensuing days have all been so much brighter and all of your voices were part of the warming light I so needed to feel.

Miss E is walking better of late and while my visions of a full dance card at the feet of "the specialists" appears to be true, it is only because the powers that be cannot find anything wrong. Methinks this is undoubtedly good.

My WonderBabe still speaks a language I often don't understand, but she is speaking. To me. And every word I do get is a victory; every sign a triumph. As the clock ticks away it is I who has to stop listening to its arbitrary noise so I can hear more of my daughter's burgeoning voice.

I learn slowly, for sure, but I am not unteachable.

Emma has faith in me - I just know it.

And thank you for knowing it too.

A Gray Day...

2008-09-12T10:41:00.010-05:00

Today I find myself wondering about my beloved Miss E. My lovely little girl with the gentle hands that long ago tamed all three of our cats and their intact claws; whose empathy overflows to the babies she sees crying at the zoo; my gorgeous babe ever growing, who sacrifices her toys to her little brother and crawls into bed with him every night because she likes to be near him; my WonderBabe with the bright smile and eager eyes has caused my heart to break a little this morning.

Why does it have to be so hard for her?

Emma has Apraxia and it is so very difficult for her to communicate with the world around her and it kills me. At home in her comfort zone she talks incessantly, trying to tell us all about her day. When, again, I fail to pick out enough words to know what she wants me to know, she merely pats my hand as if to say "it's okay". She comforts me as I try to keep up with her ever growing vocabulary of sign language (which has far surpassed mine), but of which is often modified and leaves me at a loss for words. Like my poor ear for speech (and not just for those with Apraxia; ask my last French teacher. That didn't go well. Not. At. All.), my poor eye for signing (combined with a memory that barely rivals the lifespan of the fruit fly) exists as my own worst enemy. And yet she rarely loses patience, telling me over and over again what is most important to her.

I wish I was that patient.

But I'm not.

I know, without a doubt, that I reach her. I can see that she is desperately trying to reach me and it is that striving that breaks my heart. She is trying so hard to get out of her head, and in truth has made great progress but still is faced with some walls that, depending on my own mental health of the day, can seem nearly insurmountable. Unfortunately they aren't the kind I can knock down for her.

And I know she knows it too.

A few weeks ago Pinko Grammy and Type A Grampy came home from yet another day of proudly parading her around the neighborhood (an activity thoroughly enjoyed by all) and there was an incident. Yes, an incident. Pinko was talking to a local cashier and explained that Emma isn't really talking yet after his questions were met with not so much response at all, and Emma's face crumbled. She looked up at him in defiance and with her clearest speech and most concentrated effort said "I talk". Apparently it was clear as day.

Pinko Grammy crumbled a bit then too.

Yesterday after not so much response at all to our questions about school, she finally looked at us and said "I o ool today" (I go school today). And she said it twice.

There is so much to her that we don't know because she is having such a difficult time telling us who she is.

And that makes me wonder why it has to be hard for her.

Last night WonderLove and I began to discuss recent developments in the homestead - how WonderGabe lives on air and timeouts, refuses to sleep anymore and is rapidly destroying our house in what I can only hope is typical two year old fashion (when WonderLove told me it was but a phase and I asked if he was sure, WonderLove replied "I have to believe it is only a phase); how both of the WonderKids look out for each other in such an amazing way, protecting and comforting each other as they play together endlessly; how they are both learning so much (numbers and letters are being conquered as I type), and how in love we are with both of them - and we discovered that we both think Emma is walking funny of late.

She has stopped walking up the stairs and now reaches up to be carried. When I forced the issue last night, there was much crying, until there wasn't, and eventually she did walk up the stairs. When I asked her if her leg hurt to which she replied emphatically "yeah. yeah. yeah." Now that she says well.

Can you hear my quivering sigh shudder through cyberspace?

Of course then she did a little dance to show me she can.

Off to the doctor she will go, as it takes a lot for WonderLove to confirm my concerns. He is the perpetual optimist issuing the never ending decree of "calm down" to my Worrywart Nelly. We both know that children with Down syndrome are more prone to developing subluxation, or in layman's terms to dislocating their hips, due to the increased laxity of their ligaments and joints. I'll be honest, this frightens me. Emma worked so hard to learn to balance on her own so she could walk without us hovering over her...to think of her own body undermining all that effort is heartbreaking.

So off to the doctor we will go. Back to the doctor from whence we just came for the final round of medical screening recommended for children with Down syndrome - the xray for AAI. This last appointment signified the big B-Bye to the "proactive" specialists Emma has seen because, after all, "she does have Down syndrome" (in case we missed that); the big "See ya, wouldn't want to be ya" to the rather victimizing world of proactive screening and testing. A sigh of relief I did breathe knowing we could finally drop some names from the roster; that the medical world finally deemed her as healthy and thriving. And now we will, I am sure, add another specialist to our refrigerator list.

And another neurosis to my bedpost.

Why does it have to be so hard for her?

And sometimes why does it have to be so hard for us?

Well.

Now that I have said it and borne into the world my fear and sadness, I will gently kill it right now. At least for today.

I am going to list five of my daughter's most endearing qualities (of which there is great competition, I assure you) and celebrate her uniqueness. Because that makes me happy.

I hope you will join me to and spread the love through Blogland.

1) Emma doesn't give affection away for free. You have to earn it.
2) Emma's care giving abilities and longings are endless. At two and half we used to catch her climbing up on a chair to stand over her newborn brother's bassinet, bottle in hand. His face would be covered in milk, and together they would laugh and laugh as she tried to feed him.
3) When Emma laughs or smiles, she does it with her whole body. Ever cell she has expresses her emotion.
4) Emma loves to dance. I love to watch her dance.
5) Emma is devastated by the time out that her little brother couldn't care less about. Her face crumples as she sits upon her lone stair step awaiting her four minute timer to go off; it's the end of the world. And, as a result, she doesn't get many.

And a bonus:

Emma is as stubborn as she is tender; as sweet as she is willful. She never hesitates to let us know exactly how she is feeling, yet she is coy and flirtatious. She is, in every way, her own little person, and that she comes by honestly.

And if you don't mind a walk down memory lane, might I share with you this little video of Emma showcasing her alphabet skills from the way back. Okay, notice the lack of a question mark at the end of that sentence. Go forward basis, people.

I would post a more current video, but as Emma is most definitely not my trained monkey, she wouldn't dream of doing this is front of a camera anymore. Definitely not. God forbid mommy gets any proof of your talents...

Now let's all talk about how incredibly cute she is and how she will be just fine.

You start, k?

Time to Get Your Ego On

2008-09-12T09:45:00.006-05:00

Me!

Who knew?

Somebody is out there reading. What I write.

Wowza.

Sarahlynn, Nicole, and Terri all have a crush on Lovely and Amazing.

And yes, I am blushing.

How you doing?

I am passing the love and props on to some of my favs:

Logan at Disposable for his left of center politics and aggressive passion.

JRS at ReJenerationS for her insight and sincerity.

Hector and Jennifer at Three's a Charm for their refreshing earnestness and team effort.

The Portas at Elijah Daniel for their humor and honesty.

Jen at I Never Thought because she didn't, but she does. All the time. And with wit to boot.

Y'all make my heart go pitter pat, pitter pat.

Tamara hath awarded Lovely and Amazing too! People love me and I am brilliant (yes, I believe I will go ahead and take this all so very personally. The ego takes what the ego needs...)

Does the day get any better?

This award isn't unconditional though. It's ruletime.

Put the logo on your blog. Link to the person you received your award from. Nominate at least 7 other blogs. Put links to those blogs on your site. Leave messages on the blogs you've nominated.

Looks like today is gonna be busy for moi, because it's airborne now.

Kim at The Congenital Heart Defects Blog for superb reporting on the most recent developments in the cardiac community and for her unrivaled advocacy for and participation in the heart community.

Patricia at Disability News for the exact brilliance of Kim, but for the Disability community.

Penny at Disability Studies: Temple U for her fantastic research and impassioned and thoughtful commentary.

Jeanne at Blogging Down for spearheading a cooperative blog dedicated to issues within the T21 community.

Tammy at 5 Minutes for Special Needs for her contributions and management of a blog dedicated to mothers of children with atypical needs. Us moms need some attention too.

Jennifer at Pinwheels for her love of words.

Jacqui at Terrible Palsy for her amazingly raw portrait of the life she lives, her undying love for those that matter, her constructive discussions, and because she, like me, wisely never wears her best pants when fighting for freedom.

May you all enjoy your well deserved props.

The Palin Effect

2008-09-11T09:32:00.003-05:00

And what didn't make it to air time...

We Remember

2008-09-11T08:48:00.011-05:00

A Field, And A Memorial

Adjacent to the crash site, tall grass was being mowed, clearing the way for cars to be parked.

Borza, whose daughter was on Flight 93 as a standby passenger, said she has gotten used to running into visitors.

"I kind of learned early on that people wouldn't know what to say to me," she said.

"I really had to take a look at what I could provide for them. And I do it in honor of my daughter. That's just my way of dealing with what's now in every cell of my body."...

"I am unwilling to have my daughter's death be in vain," Borza said. "Having you come down here continues the life of my daughter."

Today and everyday, memories haunt us.

Sarah Palin: Disability Advocate or Rhetorical Cloud?

2008-09-07T19:34:00.010-05:00

I decided to launch the promised (or threatened depending on your perspective) political discussion of our 2008 presidential tickets with the infamous addition of Sarah Palin to the McCain campaign. It would seem more logical to begin with an exploration of both party platforms, but as it is her nomination for Vice President that has incited repeated and painful, as one Lovely and Amazing commenter has deemed "interwebbian fistfights" (and yes, while I desperately want to avert us from that fate, welcome to my new catch phrase) across the T21 corner of cyberspace, it only seems appropriate to begin with her.

Last night's CNN news segment did not show a bounce in the polls following Palin's nomination, but admittedly they were tabulated before Palin's much celebrated RNC acceptance speech. Methinks, at least within the T21 community, there has been a bounce following the speech, though it might not have followed to the larger disability community. Our T21 community is just but a microcosm of the larger disability community, but wowza, are we loud. The echo of those voices rings both with admiration and criticism of Governor Palin. Palin and the crowd pleasing speech she deftly delivered, certainly seems to be the topic of conversation 'round these parts.

And thus I am logically disavowing the logical platform approach and embarking on analyzing Palin's promise to the disability community.

There is no doubt in my mind that Palin delivered an excellent speech with the poise and confidence of a true politician. It was energizing, inspiring, and invigorating. She was well spoken and knew exactly how to address her constituents while still appealing to the ever courted Independent, Libertarian, and Undecided voter demographics. She had me on the edge of my seat, and much like many other Americans, hanging on to her every word.

And, among many other things, this is what she said.

We were so blessed in April. Todd and I welcomed our littlest one into the world. A perfectly beautiful baby boy named Trig.

You know, from the inside, no family ever seems typical, and that’s how it is with us. Our family has the same ups and downs as any other, the same challenges and the same joys. Sometimes even the greatest joys bring challenge. And children with special needs inspire a very, very special love.

To the families of special needs – (crowd rises to its feet applauding) –- to the families of special needs children all across this country, I have a message for you.

For years you’ve sought to make a America a more welcoming place for your sons and daughters. And I pledge to you that if we’re elected, you will have a friend and advocate in the White House. (cheers)

But what did we hear?

What did you hear?

I also heard this:

Government is too big ... he (Obama) wants to grow it...What does he actually seek to accomplish, after he's done turning back the waters and healing the planet? The answer is to make government bigger...

I fail to understand how a candidate who disavows Big Government will be able to advocate successfully for the disability community; a community that has historically lobbied for more government, not less. The disability community has spent decades trying to pass more legislation protecting the rights of those with disabilities; to create more publicly funded programs to provide support of and access to those rights; and to increase budgets allocated to to self sufficiency programs. Disability history is ripe not with government handouts, but with the end goal of creating more tax payers and more active participants in society. These programs in of themselves have created and will create an entire industry which has the ability to bring further economic growth to all Americans. This is an investment that should Big Government place in the disability community, will return a profit. That profit is dependent on the full force of the investment, and if we allow the current trickle of funds to continue - a trickle down theory that doesn't support the very legislation it is bound to - there won't be anything to reap.

Is that fiscal responsibility?

The disability community today is faced with many critical issues which may not reveal themselves fully to those of us who do not have children transitioning to adulthood. We are all probably aware that IDEA has never been fully funded at the federally mandated percentage of 40%, today sitting at a meager 17%, and that Special Education and Early Intervention programs across the country have seen their budgets repeatedly cut as a result of this. It is a definite plus that under Sarah Palin's administration Alaska has seen an increase in Special Education funding, but is is also valid to point out that Alaska has overflowing coffers today as a result of oil revenues, which brings me to a few other points:

1) It has been questioned whether the Alaskan special education budget has done enough, quick enough and I simply don't know the answer to that. I know that increased funding is usually good, but I don't know whether or not there has been an relational increase in students receiving special education services either.

and 2) Would Palin continue to make the same budgeting decisions regarding education when confronted with an astronomical deficit instead of the surplus her state has been lucky enough to have?

I do know that the ticket Palin is running on has not addressed IDEA funding at all. Barack Obama, however, has promised to fully fund IDEA (the Individuals With Disabilities Act), a revolutionary commitment in its own right.

Other pivotal issues facing the disability community are job training and accommodations, employment opportunities, transition programs, independent and group housing programs, access to therapies and medical care through medicaid, and Social Security. Or rather shall I say the cycle of poverty system commonly referred to as Social Security; one which allows for a maximum monthly benefit of $637.00 providing an applicant isn't receiving more than $940.00 in other funds nor has more than $2000.00 of assets to their name. The $637 figure is based on no other income sources, and the more that an applicant receives in other monies will directly reduce the amount received through Supplemental Social Security. That monetary amount may also, at the state's discretion, be further reduced for programs and housing received.

I fail to see how, considering the deficiencies that people with disabilities are faced with today, anyone promising disability advocacy in the climate of now, could ever disavow Big Government. Really - why in the world would anybody from the disability community want to reduce the relatively small investment our government is making in the disability community.

So, that leads me to question what exactly Sarah Palin, as a self proclaimed advocate for "special needs families" defines as Big Government. It is also important to note that while Governor Palin is against Big Government, she is Pro-Life even in the extreme cases of rape and incest. The only exemption Governor Palin supports to her Pro-Life stance is a doctor's determination that a pregnancy would end (mind you not harm) the life of the mother. She also is also against gay marriage. The abortion and lifestyle debates aside, I would suggest that criminalizing reproduction freedom and excluding an entire demographic of citizens from the legal rights of marriage is, by definition, Big Government. I fail to understand how government can get any bigger once it has legislated what can and cannot occur inside the bodies of half of its' population. A population which includes the disability community, some of whom may face unique medical challenges (though not necessarily life threatening) in the event of pregnancy. And before I go any father, please let me be very careful with my words. The point I am trying to make (albeit likely poorly) is not about the right to life, the right to abortion, or the right to marry, but instead the result of federal regulation of personal decisions, some of which have long been considered outside the realm of governmental control. The result namely being what I would define as Big Government.

I assume we can infer what Governor Palin doesn't define as Big Government by virtue of her aforementioned values and subsequent rally against Big Government. But what exactly does it mean to her?

Furthermore, what does advocacy represent to and for Governor Palin?

Sarah Palin is running on John McCain's ticket, a ticket that to date has made few promises to the disability community. We know that McCain will not support the Community Choice Act, which would not create a new entitlement program, but would rather allow for more flexibility in determining the housing and care resources afforded by Medicaid. Obama, conversely, does support the Community Choice Act. We know that both McCain and Obama support the ADA Restoration Act, which personally I am thrilled about. However Obama does seem to be the candidate whom is actively courting the disability community. Just a visit to both candidates websites and a look at their declared issues will confirm that.

I also find myself questioning the wisdom of Palin's pointed jabs at Obama's experience by means of belittling community organization within her RNC speech.

I guess a small-town mayor is sort of like a "community organizer," except that you have actual responsibilities.

Of course it is more than relevant for her to question Obama's qualifications as he applies for the most powerful position in the United States; for one of the most important positions in all of the world. However to question the validity of community organizing during a convention night dedicated to "Service" seems less than appropriate. Interestingly, she continued to declare:

But we are expected to govern with integrity, good will, clear convictions, and ... a servant's heart.

This was said above a sea of Service signs waiving high and proud amongst the crowd.

So am I to conclude that service is good...unless you are Barack Obama? Is it that community organizing somehow doesn't qualify as American service? Or should I deduce that community service simply isn't preformed by those possessing a servant's heart or integrity?

How is community organizing not what a disability advocate does? Is that not service? Is that not the work of one with a servant's heart?

But lets not get too caught up in the details...or should we? Is this not the time to get caught up in details?

There is no doubt that Sarah Palin has increased the visibility of the disability community, and personally I have been incredibly excited and oh so gratified to see the Governor embrace her son with that same lil bit o' extra that my daughter has. It was been wonderful to watch her showcase him in her full mommy pride to the world. I have loved seeing Trig up on the dais of American politics, without shame or excuses, but with the full force of love and support behind him. How great is it to see the face of Down syndrome embedded in American politics?

However it is, as many in the blogosphere are doing, a valid question to ask whether the way baby Trig is being politicized in the media is actually beneficial for the disability community. I invite you to read this piece and decide for yourselves if the image of Sarah Palin as a champion of pro-life values will have a positive or a negative effect on the disability community. It certainly asks an interesting question, especially in light of the Palin campaign's insistence on personal privacy while continuing to place Palin's personal choices and family in the spotlight. And, might I add that while today her supporters have decried the media's invasion into her personal life for its questions regarding her ability to balance her family and her campaign, it was she herself who showed no sympathy for Hilary Clinton during the primary. In fact, I believe she actually used the term "whining".

But I digress (will wonders never cease).

Is exposure really the same as advocacy?

Of course I realize that Palin is a brand spanking new candidate; one who has yet to provide the disability community with the details of her proposed advocacy. While it would have been reassuring to hear some of them in her invigorating speech, I don't judge her for their absence. Rome certainly wasn't built in a day either. However, I now challenge her to earn my vote; to make me believe in the promise she made to those of with "special needs children".

I want to believe.

I want to believe that somebody will advocate for my children and for myself. I want to believe that a politician, with the full benefit of a research and speech writing team will at least discover People First Language when courting my vote. I want to believe that all of us with children with special needs do have the same goal - to make this world a better place for our sons and daughters; to provide them with every resource possible to thrive, live up to their full potential, and become as self sufficient as possible. I want to believe that Sarah Palin holds the same definition of advocacy as I do, and that she would utilize the full force of her power to break through the cement celling that has held people with disabilities for so long.

I need her to show me that, in light of her infamous "What Does the VP Do" soundbite, she would have the power to promote the change we need. Cheney redefined the scope of the power afforded the VP office; I need Palin to convince me that not only could she continue that newly minted tradition, but that she would use her power for the good of all.

These are the comments and questions that the National Down Syndrome Congress is making and recommends asking this election season. This is what I need to hear Sarah Palin address in the next sixty in order for me to take her promise seriously.

Major issues for persons with disabilities include getting a quality education, access to community-based quality residential living services (including housing and transportation) and getting a meaningful job which offers some economic self-sufficiency.

As you decide who will get your vote in November, learn where candidates stand on these important issues by asking questions. Start by asking candidates if they have a written position statement on disability policies. (If they don’t have one, ask why and offer to share your expertise as a parent or family member of a person with Down syndrome on critical issues that your family faces.)...

Education and Employment

Prior to 1971, public schools had no obligation to educate children with disabilities and many did not. The Education for all Handicapped Children Act of 1975 (later renamed the Individuals with Disabilities Education Act (IDEA) guarantees all children the right to a free and appropriate public education in the school they would otherwise attend if they did not have disabilities. The goal of education for all individuals is to prepare them for a meaningful career, economic self-sufficiency and a meaningful life in the community. Despite the fact that this law was passed over 30 years ago, the unemployment rate for individuals with disabilities remains at about 90 percent.

Question for Candidates

• What do you think should be done to improve the quality of educational services to students with disabilities?
• What would you do to improve employment opportunities for individuals with disabilities?

Community Living Services for Adults with Disabilities

The federal/state Medicaid program funds most adult services such as housing, transportation and support staff who provide assistance to individuals with disabilities with the activities of daily living. It also provides services to some children with disabilities. It is a funding stream that is biased towards costlier institutional care and under siege at the federal and state levels.

If you want those safety-net services to be in place when your child grows up — or to remain in place if your family member with Down syndrome now uses them — then you need to know where candidates stand on funding adult services.

Question for Candidates

• What would you do to bring the Medicaid program in line with the goal of full community participation for individuals with disabilities?
• What would you do to ensure that federal and state budget shortfalls do not harm programs for individuals with disabilities?
• What do you see as the role of the federal government in disability policy?
• What do you think of the trend to limit the role of the federal government in disability policy?

Key points…

• Most Medicaid dollars go to support long-term care for the elderly, not services to individuals with disabilities.
• From 2002-2004, per person Medicaid spending rose 6.7%, almost half the rate of the private market (12.5%) despite serving a sicker and needier population. Medicaid covers people with the greatest needs and its funding is essential to the nation’s public health infrastructure.

You can view what the National Down Syndrome Society defines as National Legislative and Policy Priorities here.

So Sarah, if you are the bulldog in lipstick you have said you are, put the lipservice away and bring it on.

Because we need more than a friend.

We need an advocate.

But when the cloud of rhetoric has passed ... when the roar of the crowd fades away ... when the stadium lights go out, and those Styrofoam Greek columns are hauled back to some studio lot - what exactly is our opponent's plan

So Sarah, what exactly is your plan? What languishes behind your own cloud?

My eyes are open and my ears are listening. I am waiting for you.

Until then my lipstick is blue.

And, in all fairness, those Styrofoam Greek Columns were likely borrowed from the GOP, apparently a fan of Hollywood too. You know what they say about them there stones and those fragile little glass houses...

Blogland, let the games begin.

We Need to Talk...

2008-09-06T08:37:00.004-05:00

Following the announcement of Alaska Governor Sarah Palin addition to the McCain presidential ticket, the online Trisomy 21 community has been rife with debate. Hostility and hurt feelings have been here, there, and nearly everywhere! Cries from the anguished scream "Stop it! Stop it right now!" coupled with pleas to take the politics elsewhere so they might not infringe on our friendships and unity.

Oh I understand. I so understand. But I disagree. Somewhat.

Yes, it is not nice to poke your friends repeatedly in the eye with a sharp metaphorical stick while pointing fingers and foaming at the mouth...after all, that is why we have Fox News. Let's not take their bread and butter away; they have to eat too. So, yes, let's not do that, k?

However, while it is inherently true that there are a million and one places I can cyberzoom to debate politics, I have no desire to go to www.youraliberalbutthead.com or www.republicansarecheap.com because I don't want to discuss the impact of the election with polarized red or bluers, nor do I want to address your Average Joe or Jane Doe (no offense meant to Jane and Joe). I want to discuss this with my community; with the same community that the legislature has a profound effect on; with my brothers and sisters fighting for disability rights and security. Yep, I have no shame in whipping out the ol' Power To My Peoples fist - largely because I am shameless but also because we, as a community, are fooling ourselves to think that we can affect change if we are unable to even have a discussion about how to do it.

I mean seriously.

Seriously.

Let's try not to belittle each other or become to personally involved with the candidates. We are the little people, and they are politicians (i.e. they once were people too...I have to believe that), but our commodity is our vote and they want it. What they have to do to get it is a defining illustration of the political world. Compromise is the nature of politics, for both those that solicit and those that buy. It is we, the people, who need to decide how much we can compromise before we sign on the dotted line. Political history has proven that the disability community has oft been compromised and if we want it to stop we need to talk about it.

And by talk about it, I mean with each other.

I have deliberately kept politics off of Lovely and Amazing (or as rather avoided it as much as I possibly can, which for me, is no easy feat) because they, like religion and the notorious abortion debate, carry an inherent potential for division, destruction, and doom. It has been gratifying for me to hear from new parents of children with that lil' bit o' extra that they have found a piece of comfort in my stories of life with the ever growing E or usefulness in the link in the link library I try to maintain (occasionally). I haven't wanted to sacrifice them, and this has been a difficult decision for me to make because of that. Not to mention the possible backlash from the significant portion of my readership that worship at the feet of different political gods than I. Visions of furious fingers deleting subscriptions, links, and bookmarks have haunted me.

However, there are those of us who aren't new to Down syndrome. True, it is not as though I am an old hat by any means, but the support I find myself needing from the T21 community and the larger disability community is one that encourages me to envision the future and Miss E's place in it. It is one that encourages a critical eye and promotes sincere questioning of issues that will affect and help determine that future. And that, that is exactly what I plan on opening this wee lil' blogspot up to.

This post will serve as my declaration of intent and as a fair warning to all. I hope my readership (dare I use the term?) will see this through and come out on the other side with me (i.e. October). I will begin to post about the election and those postings will involve my opinions, observations and questions. It may be one post, it may be a hundred - we will see where the rest of the election season takes us.

I am looking not to shout my opinion, but instead to refine, challenge, and rebuild that opinion. I am looking for facts and reasonable interpretations of them. I am looking for your voice as well as mine, and I encourage to begin this exploration with me, regardless of what side of the aisle you are sitting on.

I am choosing to look at the next sixty days as a unique opportunity to have a constructive conversation with my peers. If I get snippy, know now that is not my intent and that I invite you to help remind me. I want this conversation to be all inclusive - of people, of views, of resources, of facts, and most of all I want it to be one where it is acceptable to question and admit ignorance. There is much I don't know now and I am asking you, fine Blogland, to help me find it out, so that come November, I do know.

Let us all remember it is not a weakness to question either candidate, political party, or ourselves. It is a strength to be able to step back and view the larger picture; if that picture leaves you uncomfortable with the ticket you have aligned yourself with, that is okay. And if doesn't, that is okay too. But if we don't take the time to view all of it with a critical eye, an important detail or two might slip by us, unnoticed now, but left to haunt us in the future.

I will leave you with the infamous words of Samuel Adams as I begin to prepare my next post.

"Let each citizen remember at the moment he is offering his vote that he is not making a present or a compliment to please an individual--or at least that he ought not so to do; but that he is executing one of the most solemn trusts in human society for which he is accountable to God and his country."

And, because I am cheesy (I don't fight it anymore)

Power to us, baby.

The Mystery Begins to Unravel: The Science of Trisomy 21

2008-09-05T10:37:00.007-05:00

BBC News has published an article today on their website today about British cellular research showing that the addition of that extra twenty first chromosome changed the embryonic stem cells they studied.

The study, in the American Journal of Human Genetics, says the extra chromosome sets off a chain of genetic changes in the developing embryo...

The international team of researchers, which also included scientists from the US, Australia, Spain and Switzerland, looked at embryonic stem cells from mice which had been genetically engineered to carry a copy of human chromosome 21.

They discovered that the presence of the extra chromosome 21, known as trisomy 21, disturbs a key regulating gene called REST, which then disturbs the cascade of other genes that control normal development at the embryonic stem cell stage.

The scientists also found that one gene (DYRK1A) which is present on chromosome 21, acts as the trigger for this disturbance.

Dean Nizetic, professor of cellular and molecular biology at Barts and the London, said the work could one day lead to molecule-based therapies which could alleviate the effects of Down's syndrome.

"We hope that further research might lead to clues for the design of new therapeutic approaches tackling developmental delay, mental retardation, ageing and regeneration of brain cells, and Alzheimer's disease.

He said he believed the genetic effects continue throughout life.

"I suspect that it's not just important for the development of brain cells but for their maintenance throughout life; how cells age and how they can cope with stress.

"That's an area that could be approached with regard to therapies."

And thanks to Jeanne at Blogging Down, I discovered this interesting piece on brain development in Down syndrome. As Jeanne wisely warned, this video does not utilize People First Language, and as we all know, it irks me to no end when Down syndrome is defined as a disease ( For the love of god, what part of syndrome is misunderstood?), but my own issues don't negate the value of this research. They just make me crabby about it.

Food for thought, eh?

This Just In...

2008-08-29T11:27:00.003-05:00

While this announcement doesn't change my vote, I couldn't be more thrilled to see another mother from the Down syndrome community nominated as the very first Republican female vice presidential candidate. It looks like this is the year both parties entered the twentieth century (if only they realized it is already the twenty first century).

Will wonders never cease?

Regardless of who crosses the 2008 presidential finish line, this will certainly be an awesome race.

Maybe both tickets will support fully funding IDEA. And maybe, just maybe, whomever is elected will actually fully fund IDEA.

I know, I'm a daytime believer...

This I believe...

2008-08-28T14:16:00.000-05:00

I believe it too.

Do you?

Magical Moment Monday

2008-08-25T11:27:00.006-05:00

It has been forever and a day since I have posted a Magical Moment Monday entry, but as today as been decidedly magical, it couldn't be more appropriate. And it couldn't be more inappropriate.

When I began blogging and Lovely and Amazing was borne into cyberspace, my intention was to have it serve as a reference for the Down syndrome community. It wasn't to be impersonal, as it was where I planned to share my very dear Miss E with the world and how her entrance in my life had changed the very way I saw the world, but it was most definitely not to be about me. I was a subplot in Emma's story, and that was what I planned to give to my new found community. But, as time has proved, our stories are forever linked, and even in the way I write about the lovely and amazing Miss E and in my ruminations about WonderGabe, the words I chose present as much insight into them as into me. How delusional I was to think I could separate the two.

Thus the object lesson - it is not possible for me to share my experiences with my children without bestowing the intimate knowledge of myself I once thought I could reserve.

Today, and without shame, I surrender completely.

Welcome to all about me - and of the most random nature too.

Magical Moment Monday has not a thing to do with the WonderBabes, excepting their wondrous gift to leave me be and abandon themselves to the watchful eyes of Sir Snores Alot so I could have an evening and morning to remember the me who was before them. Last night and this morning I was given the gift of literature. I was actually able to read a novel (translated to mean not a trash magazine or community newspaper), and like an addict that has long ago forgotten her vice only to stumble upon it again by chance, I devoured it. Wholly and completely.

‘Life is compost. … All my life and all my experience, the events that have befallen me, the people I have known, all my memories, dreams fantasies, everything I have every read, all of that has been chucked onto the compost heap where over time it has rotted down to a dark, rich, organic mulch. The process of cellular breakdown makes it unrecognizable. Other people call it the imagination. I think of it as a compost heap. Every so often I take an idea, plant it in the compost, and wait. It feeds on that black stuff that used to be a life, takes its energy for its own. It germinates. Takes root. Produces shoots. And so on and so forth, until one find day I have a story, or a novel.’ (Vida Winter to Margaret Lea)

I just finished The Thirteenth Tale by Diane Setterfield and it was wonderful. It was filled with what can only be described as prose crafted by a lover of the English language. Her sentences reminded me of the beauty of the written word and of the missed opportunities evident in contemporary communication. She reminded me that I love words and that they have the power to consume me, completely losing myself in them, alternately skimming them in my need to be in the story and lingering over their inherent beauty and the world they have created.

They have reminded me of the child, girl and eventually young woman I once was who lost herself endlessly in the pages of books, mourning the inevitable ending and of my sad goodbyes to the characters I had come to know. Sometimes to love.

And why am I posting such a bizarre entry - so out of tune with the tone of this blog and the tone of myself? Because having the chance to remember one of the various versions of myself, one that is all too often sacrificed in my roles as wife, mother, daughter, worker, friend, housekeeper, chauffeur, advocate, and accountant (notice the obvious absence of cook? Suffice to say, not so much. For the love of god, not so much), while bittersweet, is definitely the stuff magic is made of. Childhood and youth is too easily forgotten, and being able to transcend my body and lose myself in the story, how ever fictitious it may be, was integral to the girl I once was. It is so easy to lose that girl, that child we all once were, that finding her hand again, even for such short a moment, and being able to believe in the power of a story...in the power of make believe, is like having fairy dust sprinkled around you.

And now, with made up characters dancing in my head and wisps of language floating about, leading my fingers to type of their own accord, I will take my leave. There is much to do today and I look forward to my favorite WonderBabe embrace, but for a moment, just a moment, there was no clock, no bills to pay, no laundry to do, no IEPS to plan, no sad bedtime cries...there was no me; there was only the naive faith of a child in world that doesn't exist.

And that, that made my day.

And in that vein, I hope your Monday is touched by the finest of fairy dust too.

Let's All Give Colin a Chance

2008-08-22T08:56:00.007-05:00

Colin Gets a Chance by author, Brian A. Beale, is an inspirational look into a day in the life of a special needs little boy and how the acts of a child's peers can have such a significant impact. Colin has Down syndrome. Colin Gets a Chance is based on the premise that children with Down syndrome and other special needs have so much to offer society if just given a chance. It's a book about awareness regarding a delicate subject many parents and teachers find challenging to discuss with their children. The story centers around Colin's baseball team and takes place on the day of the biggest game of the year. The bigger story is how Colin's teammates rally behind him to finally give him a chance, which is all Colin's ever wanted since the day he put on his uniform. Not only is it a chance to play but, for Colin, it's a chance at life. Colin Gets a Chance is based on the author's son, Colin Beale. You'll be cheering for Colin from the time you open the book to the very last word. The best part about Colin Gets a Chance is that every illustration was completed by individuals with Down syndrome, which truly exemplifies just what these individuals can do if given a chance. This book is sure to open up the lines of communication with your children as they learn more about Down syndrome and how much these individuals are really just like them; once they're given a chance.

For more information about this inspirational project, just put your drivin' shades on and cruise on over to the author's website.

And then, buy, Buy, BUY!

Freaky Friday hath Miracously Survived...

2008-08-22T08:23:00.012-05:00

Its baaaaack!

General Audiences
PG13

An R rating, for sure...

And yeppers...still freaky.

Wordless Wednesday

2008-08-20T08:10:00.000-05:00

Go. Read.

2008-08-20T07:56:00.003-05:00

When Words Wound by John Franklin Stephens

So, what's wrong with "retard"? I can only tell you what it means to me and
people like me when we hear it. It means that the rest of you are excluding us
from your group. We are something that is not like you and something that none
of you would ever want to be. We are something outside the "in" group. We are
someone that is not your kind. I want you to know that it hurts to be left out
here -- alone. Nothing scares me as much as feeling all alone in a world that
moves so much faster than I do.

Right Now.

Bring on the Thunder

2008-08-18T13:26:00.011-05:00

Episode II:

More Ruminations on the National Boycott of Tropic Thunder

In case you missed Episode I starring some aggression, a lot of hostility, and my favorite soap box, just clicky click!

Of course parts of Tropic Thunder are funny. I have no doubt satire is present in the movie. Unfortunately the ongoing "retard" gag completely misses its alleged mark because the script doesn't make the separation between the classic Hollywood portrayal of people with intellectual disabilities and actual people with intellectual disabilities obvious enough. The Simple Jack scene at the beginning of the movie is obviously a satirized take on Hollywood's presentation of mental retardation:

The DreamWorks marketing site www.simplejackmovie, now taken down, referred to a trailer. The site featured lushly photographed footage of Stiller as Jack romping through fields of wheat hitting butterflies with a sledgehammer, and blowing the seeds off a dandelion. A woman’s voice was heard saying, “Chet, I’ll talk to any retard I like.” And an accompanying plot synopsis described the “Simple Jack” film this way: (Text from the now-removed DreamWorks marketing site)

Set in the depression era midwest, down on their luck farmers Chet Chetkinson and his wife Rebecca get dealt a winning hand when a traveling carnival leaves a “freak” behind. The stitching on his shirt says “Simple Jack,” but Rebecca quickly learns that he is anything but simple when a ferocious junkyard dog lunges for her and Jack calms the growling beast with a few soft words and some hand gestures. Rebecca runs to tell Chet, who is hard pressed to believe her stories of an “idiot” that can “talk to animals.” Chet succumbs to Rebecca’s pleas, and they take Jack in.
Testing Jack’s “ability,” Chet makes him train and groom their wild, unbroken mustang, Nutmeg. Sure enough, after a few short weeks, Nutmeg is the pride of the Dust Bowl circuit. Things are looking up, but how will Chet deal with Rebecca’s growing platonic love for Jack? Can he “simply” let it be? Tugg Speedman stars in what one critic called “one of the most retarded performances in cinema history.”

Methinks this is obviously tongue in cheek - an obvious jab at Hollywood and its all too common patronizing portrayal of intellectual disabilities. This could have actually presented an (albiet in the worst of taste) an opportunity to have a constructive conversation about that portrayal.

But, in the context of the movie, it doesn't. It just doesn't.

Not. At. All.

Take the now infamous Never go full retard scene because it is a perfect illustration of a script that doesn't deleiver. From Patricia Bauer's website:

The “full retard” scene between Stiller’s Speedman and Robert Downey Jr.’s Kirk Lazarus is more extensive than the clip distributed on the internet. Among the lines not included in the Internet version:

Stiller: You know, it was an intense experience, you know? I just did the work. I watched a lot of retarded people, spent time with them,observed them, watched all the retarded stuff they did …..

… In a weird way, I had to free myself up to believe that it was okay to be stupid or dumb.

(Exchange with Downey Jr.) To be a moron. to be moronical. To be a moron. To be an imbecile. To be the dumbest M**** F***** that ever lived … Stupid ass Jack.

Stiller: By the end of it I was like, wait a minute. I’ve flushed so much out … how am I going to jump start it up again?

Downey: Yeah, you was farting in the bathtub, laughing your ass off …

Tell me where, exactly, in the context of this dialogue, exists the separation between Tugg Speedman as the punchline and those with mental disabilities? Implicit in the scene is the premise that it is funny because it would be retarded to act so retarded...a premise that has devalued people with intellectual disabilities right out of the gate.

It would have been so very easy, especially considering that Ben Stiller worked on this script for a full decade, to negate the negative portrayal of mental retardation that the Never Go Full Retard scene relies on. Had Ben Stiller included an actual person with mental retardation to the cast (God forbid! Employ people with intellectual disabilities? Bite your tongue!) to contrast Tugg Speedman's interpretation of a person with mental retardation, this bit might have vilified the one dimensional presentation of people with intellectual disabilities found in Hollywood. Instead the painful absence of such balance in the movie leaves Tropic Thunder aiming it's laugh track at the disability community. Think, just for a moment, of the impact an actor with an intellectual disability would have had in a scene criticizing Tugg Speedman's portrayal of Simple Jack. How simple would it have been to add something like this:

"I saw your movie, Simply Jack"
"Yeah. Did you like it?" (said slow, loud, and patronizingly in tune with the character of Tugg Speedman)
"No. It wasn't retarded. It was stupid"

A plot device such as the above would have driven home the separation between laughing at Hollywood and mocking people with intellectual disabilities; it would have helped balance the entire Simple Jack story line. This is exactly the same technique Ben Stiller employed when he wrote in the character of Alpa Chino, played by Brandon T. Jackson, an actual African American actor whom acted as a control factor next to Robert Downey Jr's outrageously black faced Kirk Lazarus.

Speaking of which, as every mainstream critic and blogger seems to be shielding their glowing reviews of Tropic Thunder's Simple Jack storyline with the cliched "Equal Opportunity Offender" defense and parading Robert Downey Jr.'s black faced Kirk Lazarus as evidence of such, I would like to point out an essential difference: relevance. When is the last time you saw an actor appear in a film in black face? As a Hollywood technique, it hasn't been employed since the 1930's yet Stiller and Dreamworks were still very conscientious about how far they were taking the gag because even they realized it might still be too soon.

Conversely, when is the last time you hear "You're so retarded" or "That's so retarded"; was it as long ago as yesterday? Where did you hear it? On the playground, from a cashier at the grocery store, on prime time television during dinner? As far as I can see, the only place I haven't hear it yet is Sesame Street and the nightly news. I have faith that Sesame Street will stay strong, but I wish I could say the same for the news...

If you are going to satirize a current cultural phenomenon, you have to take extra care to insure the audience is laughing at the right target. This was less challenging with the black face gag because it is less likely that someone would take something so old school and outrageous seriously, but degrading the intellectual disability community isn't outrageous. It isn't old school. Apparently, as we are finding out, it isn't even surprising.

It happens every day, thousands of times over at the behest of every kind of person. Occupational therapists and teachers have allowed themselves to buy into the slang definition of retarded as meaning "ugly, bad, and stupid"; professionals and adolescents alike carelessly use it without any idea of the impact it has on the disability community.

As Tropic Thunder has.

I have no doubt that it this blunder wasn't intentional, nonetheless, it is what it is (though it certainly didn't hurt their media exposure, did it?). Had Ben Stiller and Dreamworks examined the Simple Jack/ Tugg Speedman storyline with the same critical eye they viewed the black face gag, they could have prevented this self declared "misunderstanding". Because such foresight was not put into the Simple Jack gag, here we are today. Complete with a bewildered Ben Stiller awkwardly explain that no offensive was meant, k?

After the offense was brought to the studio's attention, before the movie was even released, they had an opportunity to minimize the damage. It would have been unrealistic to think they would re-cut the movie, but concessions could have been made. How easy would it have been to place a PSA in front of the movie? In fact, Blueberry Shoes had already put one out...Dreamworks would only have had to add the reel to the projection booth.

How about issuing an apology? And by apology, I do not mean the self defense statements currently floating about, but one that actually acknowledged the validity of the disability community's concern; one that didn't of paint us as the over reactionary politically correct thought police? Accepting the tiniest about of responsibility would have gone a long, long way towards toning down the argument. Of course, then Dreamworks wouldn't have been able to milk the press coverage like a farmer milks a cow (oh peanut butter! Is my cynicism showing again?)

But it is what it is.

And that is a studio whose only concession was pulling the Simple Jack marketing campaign. That is a studio who sent a message when it didn't make make an effort to minimize the damage inherent in the slander present in its 100 million dollar production. We in the disability community have received that message, and to say I am underwhelmed would be compliment to the studio. I choose to believe that message is "Not our problem" but I wouldn't debate someone who argues it is "F off".

Which sucks.

It sucks because I couldn't agree more with Stiller and his assessment of the hypocrisy inherent in a Hollywood that would never dream of parading a white actor out in black face, but does the same for characters with intellectual disabilities. Those roles should be reserved for actors with disabilities. Not only would that kind of casting standard bring authenticity to the portrayals of mentally disabled characters, it would represent actual integration of the disability community in a media sorely lacking in both sincerity and inclusion.

Honestly, it astonishes me that a movie the purports to expose the Hollywood hypocrisy of using self important actors pandering to an Oscar audience by exploiting people with intellectual disabilities, doesn't actually have any people without developmental disabilities in the cast. How is that not the teapot calling the kettle black? How is Tropic Thunder not a symptom itself of the culture it is indicting?

However, because Tropic Thunder truly blundered and was so sloppy and careless with the Simple Jack storyline, Tropic Thunder completely missed it's mark. Instead of creating something that could feasibly actually exist in synchronicity with some disability rights advocacy, it has done far more harm than had it never attempted to tackle such a tricky subject in the first place.

And nowhere is that damage more evident than in the backlash against the Tropic Thunder boycott. Wowza - as offensive as Tropic Thunder is, is has nothing on some of the commentary sparked by both a valid and an important debate regarding Hollywood's portrayal of people with disabilities. (How is that for irony? Tropic Thunder did spark the same discussion it purports to have intended ...it's just on the crappier side of the debate.)

Point in case:

John Says:
August 16th, 2008 at 10:01 am
It amazes me now many well-intentioned folks are going full retard over a stupid movie. It’s like a Special Olympics event to see who can generate more publicity and make the phrase *more* popular, because, just like the Special Olympics, no matter who “wins”, you’re still retarded!

“Never go full retard!”

SimplerJack Says:
August 14th, 2008 at 11:24 am
So why the big fuss? Retarded people won’t even know they’re being made fun of. No harm, no foul.

Have you seen the comments left at Chewing the Fat?

And that, my blogging friends, that is why we are bringing on the Thunder.

If you're bringing on the thunder too, just post your link below and I'll add it to the Master Thunder list.

* And as a final and more personal note, might I add that until recently, Robert Downey Jr. was my boyfriend? True, he didn't know it, but we've been together since the eighties. I was there for him when he was jumping into unsuspecting neighbor beds hopped up on the white stuff, and thrilled when he made a comeback on Ally McBeal. Jack Black, though he has made some absolute crap, was brilliant in Be Kind Rewind, and that, now that, was a piece of film. Ben Stiller has been known to make me giggle too.

This breakup hasn't been easy for me. I was so ready to work with Tropic Thunder and its beloved cast, but my ethos (which is often suspect itself) cannot excuse the delivery of the movie because they allege good intent. My demographic was pooped all over and my daughter was treated like antibiotic resistant E coli. And I am pissed off.

They hath forsaken me (sigh; grasps tissue and blots at eyes) and a divorce is pending.

I am going to try to get every single cent I can.

Never Go Full Stiller...

2008-08-15T18:08:00.004-05:00

Unless you live under a rock delightfully free from the modern day media and maybe a little less delightfully free from the information superhighway (I love me some Internet), you have probably heard all about the new Ben Stiller and Dreamworks Studio film, Tropic Thunder. You have probably been told about it's satirical take on Hollywood exploitation and the self absorbed, ego maniacal nature of its' biggest stars. And lucky you, you found out about its movie within a movie premise, the Simple Jack character and tag line "Once upon a time there was a retard". Of course you probably have even seen the now infamous scene starring Ben Stiller and Robert Downey Jr. in which Downey Jr.'s character (in full black face) gives the sage advice to "Never go full retard".

If you know all about Tropic Thunder, then you definitely know about the national boycott of the movie for it's usage of the word "retard" and it's portrayal of people with mental retardation. The National Down Syndrome Society in conjunction with the Special Olympics, and a host of other disability rights advocacy groups have drawn a line in the sand and they won't be crossing it. Ever.

Let's review:

And let's not forget the official marketing campaign:

Of course there is also the offshoot merchandise you can purchase for a mere $14.99 on the Internet:

This concludes the review section of today's rant.

Now for the goods...

Here is a collection of some recent "film" criticism regarding the movie and it's notorious controversy. It is a perfect example of the backlash against a campaign seeking respect and dignity for people with intellectual disabilities. Suddenly the movie, which certainly is not in the same category as film, has champions across the main stream media looking to defend, get this, its integrity as social commentary. Seriously.

I'm not making this up.

* "Not only is 'Tropic Thunder' guaranteed to offend, it already has. One of the mock films it references, 'Simple Jack' and its story of a developmentally challenged young person who talks to animals, uses the tag line 'Once upon a time . . . there was a retard.' This has so upset advocacy groups that news reports say a coalition of them is intending to call for a nationwide boycott to protest 'the movie's open ridicule of the intellectually disabled.' But it would be regrettable if 'Tropic Thunder's' undeniable excesses, including having an actor indulge in the 21st century version of blackface, blinded viewers to the reality that, like it or not, there is genuine humor and palpable satiric intent underneath the waves of unnerving bad taste and political incorrectness." -- Kenneth Turan, the Los Angeles Times.

* "The scene in which the derisive Alpa Chino [Brandon T. Jackson] nails Lazarus' recitation of black-uplift homilies as nothing more than the lyrics to the 'Jeffersons' theme is funny; but the one in which Lazarus quietly explains to Speedman that his 'Simple Jack' character failed because he made the mistake of going 'full retard' -- rather than softening his character with cuteness in the manner of 'Forrest Gump' -- is so on-the-nose accurate, it takes your breath away." -- Kurt Loder, MTV

* "A coalition of disability-advocate groups is organizing a boycott of 'Tropic Thunder' based on what they see as the offensiveness of the 'Simple Jack' gags. . . . But comedy needs the right to be offensive, and Stiller at least has the courage of his convictions: When he uses the word 'retard,' it's deliberate, not casual." -- Stephanie Zacharek, Salon.com

I am not exactly sure which is more insulting - the assumption that because I find the usage of the word "retard" offensive in the context of this script I am inherently incapable of understanding satire; the open acknowledgment that a bigoted slur is repeatedly used but is excused under the guise of satire, or that Ben Stiller is actually courageous for writing a screenplay that relies on degrading an entire class of people to send the outstandingly original message that Hollywood is corrupt.

Rest assured I get satire. I love satire. Satire, when done correctly, is an incredibly effective social commentary tool, and usually very funny. The more subtle it is, the funnier it gets.

This is not satire. Satire would be a movie featuring the characterization of a white Hollywood movie star lobbying for a choice African American role whom foolishly appeared in blackface and used the N word repeatedly amongst actual African Americans in an attempt to become the character. That would be satire. Interestingly enough, in a Tropic Thunder story from The August 15th issue of Entertainment Weekly, this was said:

EW: Your Costar Brandon T. Jackson told me there was a scene in the script where Osiris (Robert Downey Jr. in blackface) uses the N-word and that he said it went over the line.

Downey: Brandon might have saved the movie that day.

Stiller: For sure.

That dialogue was cut because it crossed the line (i.e. satire fans everywhere - it wasn't worth the risk of alienating the African American demographic to make it's point), but the derogatory use of the slur "retard" is used 17 times. 17 times because the powers that be (i.e. the holder of the almighty checkbook) decided the million or so people in this country affected by intellectual disabilities and mental retardation didn't constitute a big enough demographic to worry about offending. Or maybe they think we are poor as hell.

Satire, when done correctly, makes its target obvious. Unfortunately Tropic Thunder, in its misguided attempt at satire concerning mental disabilities, fails to do so like nobody's business. Let's examine (just for kicks, k?) the phrase (and merchandise) touting the line "Never Go Full Retard". This outrageous slur fails to make the separation between the one who would act retarded and the one who is mentally retarded that satire requires. The end message is that nobody should ever act retarded or be retarded because both are presented as undesirable and comical.

As we all have heard (endlessly, might I add) from Ben Stiller and his Dreamworks croonies, the film isn't mocking people with intellectual disabilities, just the actors who would portray them in film. I am sure that every 12 year old who gets a hold of a shirt that says "never go full retard" will wear it thinking "I am making fun of an actor and his misplaced Oscar aspirations". That's exactly what will be on the lips of every adolescent on the school bus this fall. Really.

Ultimately this is a cheezy slapstick movie going for the cheap laugh in over the top scenes. This is not a"film" nor in any way is it associated with art or constructive social commentary. It's a frat boy fart movie that a studio sunk ninety million dollars into betting that a unconscientious audience would turn it into a goldmine, regardless of ethics.

And in that bet, the studio completely wrote off the demographic of the intellectual disability community...as though those with mental retardation, learning delays, autism spectrum disorders, brain injuries, physical disabilities resulting in oxygen deprivation, and those that love them, have no spending power. As if we are too busy trying to stay alive and learn to read that we would never, ever consider going outside, yet alone going to the movies. As if we didn't even exist except as a punchline.

My money is as good as anyone else. I buy movie tickets. I buy t-shirts. I buy into media hype too.

Just not Tropic Thunder's. I will never "go full stiller" again. I would rather poke myself in the eye with a sharp stick than pay eight dollars to see a poorly disguised disability slur made at the expense of an entire class of people. All so I can come to the not played out at all conclusion that Hollywood is corrupt and insincere. Wowza - that's a revelation. Oh, I'm sorry - is my sarcasm showing again?

And then there are the bloggers. Yes...apparently every morally bankrupt excuse for humanity in the country has an Internet connection. Yippee.

Tropic Thunder's Retard Saved From Political Correctness

That's right, calling your buddy a "retard" is now hate speech. The next time one of your friends does something stupid, think before you verbally lynch him...If you don't like the word, don't use it. Don't see Tropic Thunder. Or see the movie and hate it. You're not required to like it, but that doesn't give you the right to stop the rest of us from using it, or from seeing the movie if we want to. That's what living in a free society is supposed to be about. Leave retard alone. We're taking it back.

No he didn't.

He is taking back the word retard. Never mind that this self proclaimed owner of words never had a right to it in the first place, but it would just really bum him out if he didn't feel comfortable using it as a synonym for "ugly, bad, and stupid". Never mind that it is a medical diagnosis that many people have; never mind that it kills most people in the disability community to hear it used in such a disrespectful way. Regardless of the endless words in the English language dedicated to insulting other people, it would be a travesty to have utilize one that didn't assume that mentally retardation is the very worst thing that could ever happen in all of the world. It's all about him and his right to slur others. In fact, it would be a violation of his first amendment rights to ask him to stop using the word retard as a slur. How dare we even think we could ask?

And if I read one more "My auntie works with the mentally retarded so if this movie was offensive, she'd know it. She thinks it's hilarious" comment I will vomit. If, by chance, I am lucky enough to have any such nieces or nephews reading right now, please know three things:

1) Your auntie isn't "in the know".
2) Your auntie desperately needs a new job.
3) If I were you, I wouldn't actually admit to anyone, ever, that my aunt is Nurse Ratchet.

So the bloggers that be are wrapping themselves up in founding principle of our country - the first amendment. An amendment that was designed to protect those that have been disenfranchised and persecuted for the beliefs and ideas; one that offers shelter for those that make a stand for their rights those around them. The first amendment is one of the most noble of all amendments and this is what is being used to justify what amounts to tired bullying and bigotry.

Unbelievable.

Do I think that Tropic Blunder should be banned? No, I don't. Do I think that the word "retarded" should be banned? No, I don't. The right to free speech is an integral part of my belief system and because of that, and only because of that, I don't. I don't think the N word should be banned either, because I don't think words should be banned, but I sure as hell would be furious to hear it used in the same context that "retarded" is being employed in Tropic Blunder.

Lord knows using the word retarded as a slur is far more damaging than the F-bomb, and we, as a society, have made all kinds of restrictions concerning that word. That you won't ever hear on prime time, but the same is not true for the "R" word.

I think people should choose not to use it in the pejorative sense because that is the right thing to do. That is why racial and sexual oriented slurs and epithets are frowned upon in the public eye of society. We, as a society, have decided it is not okay to belittle and humiliate a historically oppressed people based on characteristics beyond their control...at least not outside the privacy of our own homes.

However I do hope that Tropic Thunder flops like no one has failed before. I hope that the stand the disability community is making hits Hollywood and society right where it hurts - in their pocketbooks. In my perfect Utopia this movie will make "Waterworld" look positively successful.

Ultimately this movie and the controversy around it have made one thing painfully clear. People with intellectual disabilities, whom have a rich history of imprisonment, institutionalization, abuse, forced sterilization, public humiliation, segregation, and exclusion are still, in today's society of IEPS and mainstreaming, second class citizens. Forty years after the disability rights movement began in earnest, after the Individuals with Disabilities Act was signed into law, this movie proves that people with intellectual disabilities are still fair game to denigrate and mock in the full eye of public society; that it is still so socially acceptable to use mental retardation as a comic prop that a significant portion of the movie going population is shocked by the disability community's response.

The turn of the century saw the feminist fight for the right to vote; the middle of the century was rife with the fight for civil rights - both legally and socially. There have been great victories on both of those fronts, and while neither sexism nor racism is by any means dead in this country (in fact both are alive and kicking today), we have drawn important boundaries regarding social treatment of women and ethnic groups. Imagine, for a moment that the tag line for Tropic Blunder was "Never Go Full N*gg*r". Can you? Can you even imagine a major studio releasing a movie containing that kind of volatile racial slur with all it's connotations of historical abuse, segregation, and prejudice, in that context?

I think not.

Then riddle me this - why, for the love of god, should another class of disenfranchised people with a history that is also rich in suffering at the hands of a society that has dehumanized them, accept it?

Tropic Thunder, with it's unabashed disability slurs continues to propagate a negative stereotype of people with intellectual disabilities as stupid and embarrassing buffoons in a world doesn't take them seriously as it is. The nature in which Tropic Thunder has presented people with disabilities unfortunately is typical of a world that has failed to successfully integrate people with intellectual disabilities into society. We live in a country that doesn't often employ them, only occasionally houses them, and defines a monthly maxium benefit of $666 from Social Security (as long as you don't make more than $800 a month of your own accord, of course) and access to a publicly funded education as "inclusion". If people with intellectual disabilities were fully integrated into society, their medical diagnosis would be treated with the same dignity other diagnoses are; parents of typically developing children wouldn't keep complaining about all the resources spent on Special Education Students or publicly discuss whether the addition of children with special needs to mainstream classes will suck the smarts right out of their own children. Certainly if people with intellectual disabilities were full integrated in society, a major studio would never dream of actually promoting a film with the tag line "Once upon a time there was a retard".

Maybe you want to see the movie before you judge it, which is of course, reasonable criteria for any judgement. Please know though, that the minute you buy a ticket, you are buying into a caste system our society has forced people with mental retardation into...one that exists as the very bottom tier.

And should you decide to chance it and buy into this system of prejudice, know it is at my daughter's expense. Know that they are talking about her when they use the word retard. Know that she is their "retard".

Know that this is the R word that society should be utilizing.

Friends don't let friends see Tropic Thunder because friends don't let friends go full Stiller.

After all, how Stiller would that be?

Oh, and by the way...the mainstream bloggers have got it wrong. We are taking the word retarded back. It was never yours to begin with so quit yer bitchin'.

And no, you can't borrow it.

Cue theme music.

I Hath Returned...

2008-08-15T08:07:00.019-05:00

Ahhh...summertime. I feel I barely knew thee before you began to run away.

So obviously I am a bad, bad blogger. The long summer days and warm nights are a jealous lover; The summer haze stole me from my cyberspace love and forced me to leave the desktop all alone; abandoned in the land of nada with nary a playmate.

It's not my fault. Summer is a high maintenance mistress.

But, I have pulled myself from her humid grasp long enough to announce my return. Hopefully a nice long return...but as my attention span is my own worst enemy (fruit flies have longer life spans) and time keeps chasing me down (with the constant tick of the tock - my lord, enough already!), just know that I have the best of intentions.

The WonderBabes have fared well this summer. Playdates, beaches, and dirt, oh my! They have been busy little bees and are growing so fast. Miss E now uses her own "shopper in training" cart at the grocery store and has finally taught her little bro-ham how to jump (and by jump I don't mean the classic crouch and stand up while screaming - I'm talking wind beneath his legs). As for my little squeaker Gabe (also known as the brand new two year old), well this is the season he officially has just no time for eating and sleeping...the child is living on air and timeouts.

For you, my cyber peeps, I have a treat. In fact, I have a deal to make. If you can hear the echo of my long lost typing through the halls of cyberspace and decide to come back for a 'lil status quo check up on Lovely and Amazing and the Case of the MIA Blogger, I'll post some of the best WonderBabe photographs to grace the walls of Blogland and maybe...just maybe, a video.

What was that? You'll come back? Why, of course I'll make good on my end of the deal.

Our Floridian Vaca...

Gabe's very first time seeing the ocean (they became the bestest of friends)...

Cousin Sophie

A gaggle of cousins...

Apparently Emma can make friends at the speed of light....

Gabe's Birfday Toddler Ruckus...at an amusement park no less...

Two and already driving...

And for the Grand Finale, A great meeting of the minds!

So. for my Blogland 'peeps o' mine, come out, come out wherever you are!

Greetings and Salutations from SlackerLand

2008-06-26T14:18:00.029-05:00

Also known as it is finally summer. Thank. God.

So...what has BlogLand missed during my unexpected sabbatical? The WonderBabes did return from their family vacation in the Southland and I found out that five days really is too long to live without wonder. Thankfully during their absence I only embarrassed my self slightly (what with the girlfriends, whine, and empty abode) and avoided jail time completely. Whoo Hoo!

What happens in the empty house, stays in the empty house. Who needs Vegas?

Since the Fiercesome Twosome jumped back into my arms we've had long summer days filled with stroller rides, swings in the park, afternoon ice cream, the screams of transition accompanied by the infamous Drop and Flop (that would be all Gabe; Emma played the Dead Weight card back in her toddling days) and the first official wading pool visit of the season. A visit that, might I add, proved an almost two year old can drown in a mere two feet of water. Yeppers, I have discovered that when Gabe falls in the pool he doesn't stand up, but just sinks helplessly to the bottom of the pool (OMG! Why don't you stand up!). So a healthy fear of water has emerged for Danger Babe and his neurotic mother has finally calmed down again (I still have images of him slowly sinking beneath the less than knee deep water, somehow aligned perfectly horizontal to the concrete pool floor).

Little Miss E is out of school for the summer and excepting the Monday program she and Gabers are enrolled in, it looks like the Wonder Parents (as in I wonder what we'll do today? Where are the Arts and Crafts people?!!!) will be responsible for filling a dangerously empty schedule (theirs, not ours). May the force be with us.

We have decided to start with a family vacation to the beautiful state of Florida where we will introduce Gabe to the ocean and be thankful for his new found fear of water. We will be staying on the beach with family and dreams of hot tubs and waves are already running through my head. That adventure begins this weekend and will last through the firecracker holiday. Can anyone say Pina Colada?

So now, for the WonderBabe fans, I have kept you waiting long enough with all of the "blah, blah, blahing" - it's time to git your picture on!

The WonderBabes also joined me to celebrate their Godparents' ten year anniversary by renewing their vows in front of their loved ones. I was the official image maker for the day and tried not to wince too hard as I completely shirked in my supervision duties and Pinko Grammy and Type A Grampy picked up the slack. They fielded the Fiercesome Twosome during their numerous escape attempts as I remained safely behind the shutter muttering "some people's kids" to everybody I could. Pinko Grammy and Type A Grampy miraculously survived.

And the (still) happy couple

Now that you are all caught up - go forward basis, baby! Stay tuned for the next exciting installment of Summer 2008 which could answer such burning questions as Will Gabe ever tire of Time Out? Will Emma finally learn to use the big girl swing all by herself? Will their mother invoke a moratorium on the all too familiar Drop and Flop? And of course, the best one yet - What does a vacation look like?

Hello Prime Time

2008-05-29T08:27:00.004-05:00

"It's not about wining or losing, it's about having fun."

I couldn't agree more.

It's All About Me

2008-05-22T14:40:00.003-05:00

Yep. That's me. Prove it isn't.

I love the Internet.

Archie hath tagged me with the Me Me Meme. This is all his fault.

What I was doing 10 years ago: Desperately trying to find a phone company that would take mercy upon me and give some service to the college poor after returning home from a month abroad while Pinko Grammy (not so patiently) awaited the promised phone call of my safe return. After receiving some not-so-nice messages my employer logged (as in "you need to call your mother right now. I cannot repeat what she said"), she finally did receive the anticipated reunion call. About a week late.

That was when she found out I had begun living in sin with a boy who didn't have a phone.

I am definitely going to hell for that.

But, on the plus side, I did eventually marry Sir Snores Alot, didn't I?

5 things on my "to-do" list today:

1) Work

2) Make sure Sir Snores Alot and WonderBabes actually make their flight

3) Make sure Sir Snores Alot and WonderBabes make it off the flight

4) Realize that I am home alone. As in a.l.o.n.e. Not even a babysitter. Just me and our three high maintenance felines. Wowza. Seriously.

5) Uncork wine bottle and run amok in my skivvies with loud offensive music blaring as I shout obscenities at the cats.

Did I mention that I'll be alone?

*Note to self - don't forget to draw down the shade*

And I'll add a bonus item too:

6) Call Sir Snores Alot and WonderBabes at bedtime for a virtual goodnight kiss and remind them how much they miss me.

Bad habits: None. Whatsoever. Didn't you see my picture above? I'm off on another goodwill mission tomorrow. I'm thinking of buying a third world country and setting it free.

Ok, it is possible that I have a bit of a problem with fibbing. Just a tiny bit.

Of course, there is the issue of my to do list, item 5.

You make the call.

5 places I've lived:

1) In my head

2) Outside of my head

3) In Brad Pitt's head (again, refer to aforementioned picture)

4) In a closet

5) In the Cheese Belt

And for the viral part of this meme - 4 people I want to know more about:

Jen at I Never Thought, Anne at Archie's Room, Carey at Dream Big; and Pam at Rhett's Journey.

I apologize in advance.

Kinda.

Lions and Tigers and Bears, Oh My!

2008-05-19T10:24:00.012-05:00

Okay, I may be lying just a little bit about the bear part.

The Fantastic Four and their tired mamas toured the local (and imported) wildlife at our free zoo yesterday. Great fun was had by all...which is impressive because yet again, Gabe's zest for life and little legs led gleefully him away from the group...again, and again, and again. Insert childish happy laugh followed by a most unhappy authoritarian (or so I like to think) "Gabe, come here!"

As Mama C said "That kid is running his way right into a child leash".

My sentiments exactly.

Barring the restraints that li' G might soon find himself in, here are a few Kodak moments from our animal fest.

Not only did Emma and Gabe get to ride on the train, Emma also got to ride on her first official "real" amusement park ride...right next to moi. We, along with all the other trusty four and five year old fire fighters, put "out" a fire blazing from a "burning" building (and by fire and burning I mean paint and paint). We stood in two person fire carts that went up and down, round and round while we held our fire hoses and sprayed to our hearts' content. Fake fire - real water. Emma loved it.

Lil' G and Baby A were too wee to join us. Baby A handled it much better than Gabe. He really put some force into that tantrum. Luckily I was on an amusement ride...feeling nice and amused.

The return home brought snores aplenty and this little adorable scene.

How cute is that?

This will be the Summer of the Fantastic Four. I can feel it already.

Amy Harmon Gets Her Props

2008-05-18T19:45:00.005-05:00

2008
EXPLANATORY REPORTING

For a distinguished example of explanatory reporting that illuminates a significant and complex subject, demonstrating mastery of the subject, lucid writing and clear presentation, in print or in print and online, Ten thousand dollars ($10,000).

Awarded to Amy Harmon of The New York Times for her striking examination of the dilemmas and ethical issues that accompany DNA testing, using human stories to sharpen her reports.

Can anyone give me a whoo-hoo?

And from my Lovely and Amazing Friend Nancy:

New York Times Reporter wins Pulitzer for Disability-related Articles

Amy Harmon has received a Pulitzer Prize for explanatory reporting, awarded for “her striking examination of the dilemmas and ethical issues that accompany DNA testing, using human stories to sharpen her reports.” Ms. Harmon’s on-going series “The DNA Age” explores the impact of genetic technology in every day life. In 2007, she authored ten articles in this series, several of which focus on genetically-related disabilities.

Among the articles is “Facing Life with a Lethal Gene” detailing the experience of Katharine Moser, an occupational therapist who has tested positive for the Huntington Disease gene and who has yet to develop symptoms. Another article, “After DNA Diagnosis: ‘Hello, 16p11.2. Are You Just Like Me?’” explores the modern ability of those with rare genetic mutations to make connections with other families.

Two related articles in the series, “Prenatal Test Puts Down Syndrome in Hard Focus” and its follow-up, “Genetic Testing + Abortion = ???” brought national attention to the complex subjects of prenatal testing, abortion, Down syndrome, parental advocacy, and the ethical dilemma of many liberals who are both pro-choice and pro-disability rights.

For a full description of this Pulitzer Prize category, Ms. Harmon’s autobiography, and the prize-winning articles, see the Pulitzer website. All of Ms. Harmon’s DNA Age articles can be viewed here.

Whoo Hoo!

*many thanks to Nancy for writing and submitting the bulk of this entry*

Look Out Hollywood - There is a New Diva in Town

2008-05-18T09:14:00.007-05:00

One day Max declared that he wanted his mum to dance with him. I froze, but Max announced: "No, not her - my other mum!"

I felt mortified that Max was demanding Cate Blanchett, his mother in the film, dance with him.
But she rose to the occasion with charm and elegance - the two of them danced with abandonment as the cast and crew cheered and clapped.

Were they indulging my precocious son? You bet, and I love every one of them for it.

Max has now landed his second screen role in a major movie - playing the part of a key witness in a thriller. So, now we have a Hollywood movie star in our small family unit.

Max fits the part perfectly - he's a diva to the core.

To Max, life is one big adventure: he chooses to see his cup as half full, positively overflowing, never half empty. Perhaps we could all learn a lesson from that.

Perhaps we could.

Perhaps we should.

Perhaps we will.

Have I wet your appetitite? Are you hungry for more?

Just click clicky to read all about Max Lewis through the lens of his mother, and biggest fan, Sandy Lewis.

Friday is Freakishly Fantastic...

2008-05-16T12:56:00.007-05:00

Seriously?

I highly recommend clicking on the above "job application" so it's full glory can be revealed.

Seriously.

This week's theme was brought to you by the "Winner's Circle".

Note sarcasm.

Let's Get This Caucus On...

2008-05-14T09:04:00.014-05:00

Republican Congresswoman Cathy McMorris Rodgers (Eastern Washington) is blazing through the house with her just premiered Congressional Down Syndrome Caucus. Apparently she too has become fed up with societal attitudes about Down syndrome and is taking it out on the house.

Good for her.

Rep. Pete Sessions (TX-32), Rep. Patrick Kennedy (RI-01), and Delegate Eleanor Holmes Norton (DC-AL) are all co-chairing with Ms. McMorris Rodgers.

FOR IMMEDIATE RELEASE
May 8, 2008
Back to press releases

McMorris Rodgers Announces New Congressional Down Syndrome Caucus (Washington, D.C.) Today, Congresswoman Cathy McMorris Rodgers and other members of the Congressional Down Syndrome Caucus held their first briefing. Today’s briefing marks the first official event of the bipartisan caucus since its launch last week.

McMorris Rodgers co-chairs the caucus. She and her husband Brian have a one-year-old son, Cole, who has Down syndrome.“The news of Cole’s Down syndrome was at first difficult to get our arms around and we were eager to learn all we could,” McMorris Rodgers said. “I’m often asked how being a mother has changed my life and changed my priorities, and I can assure you that it’s all been for the better. I have a new passion and a new energy for everything that I do. We have every intention of doing everything possible to ensure Cole has every opportunity to reach his full potential. I believe the Congressional Down Syndrome Caucus will be a vehicle to help bring this information to the forefront so all families of children and adults with Down syndrome can lead happy lives.”

From McMorris Rodgers' website:

Mission of Congressional Down Syndrome Caucus

The mission of the Congressional Down Syndrome Caucus is to educate members of Congress and their staff about Down syndrome. The Caucus will support legislative activities that would improve Down syndrome research, education and treatment and promote public policies that would enhance the quality of life for those with Down syndrome.

The Congressional Down Syndrome Caucus will:

Urge relevant authorizing committees to support Down syndrome programs and patient care through letters and testimony.

Hold informational events for Members and staff here in DC to increase awareness of the disorder among Members.

Ensure Down syndrome is adequately addressed in all relevant legislation and regulations.

Continue to build House Congressional Down syndrome Caucus into a sustainable, dynamic political force and informational clearinghouse by increasing membership and activities.

Work with National and Local Down syndrome groups to develop leading edge educational, medical and work related initiatives that support individuals with Down syndrome.

Identify and strike down barriers in the law for person’s with mental disabilities.

Expand opportunities for the Down syndrome population in education, the workplace and society at large.

Goals of Congressional Down Syndrome Caucus

To raise expectations and improve outcomes in education.

To eliminate barriers to economic opportunity in employment and in programs that promotes savings and investment.

To promote and fund research that accelerates the development of effective treatments and therapies.

Promote the translation of Down syndrome research into effective new treatments through interdisciplinary cooperation among the various NIH institutes, the FDA, the CDC and privately funded scientists and clinicians.

To promote inclusiveness for people with Down syndrome.

To help provide family support services and a community of care model.

Advocate for the rights of those with Down syndrome and make sure those rights are being enforced.

Clicky click here for the press release from the National Institutes of Health regarding their research plan for Down syndrome.

The National Institutes of Health has developed a research plan to advance understanding of Down syndrome and speed development of new treatments for the condition, the most frequent genetic cause of mild to moderate mental retardation and associated medical problems. The plan sets research goals for the next 10 years that build upon earlier research advances fostered by the NIH.

Rep. McMorris Rodgers sent out an email to her constituents about the first caucus meeting which sounds delightfully successful.

I'm especially encouraged to see the coordination and emphasis on cross disciplinary institutes -- National Heart, Lung, and Blood Institute supporting studies of the genes that contribute to heart malformations (it's interesting to note there is no documented case of a person with Down syndrome having a heart attack) and sleep apnea; National Cancer Institute investigating various types of leukemia; National Institute of Aging targeting ways to treat Alzheimer's; National Institute of Allergy and Infectious Diseases involved in immune response; National Institute of Mental Health focusing on treatment for mental disorders including autism, obsessive-compulsive disorder, depression, and psychosis; and the National Institute of Neurological Disorders and Stroke (NINDS) looking at how the brain is developed and affected). Congress requested this plan in 2007. I want to get more information.

And yet another great resource that emerged from the launch of the caucus was Standford Dr. Bill Mobley's PowerPoint presentation on neurology and Down syndrome. You can review it here.

He challenged us to approach Down syndrome research as a special, biologically unique opportunity as breakthroughs in Down syndrome will explain the cause of the same diseases in people who do not have Down syndrome. "We're not just asking what our country can do for people with Down syndrome; we're asking what studies of people with Down syndrome can do for our country and the world."

I will leave you with these parting cyber words from our pioneering representative:

"It was exciting to see the politicians, researchers, and Down syndrome community coming together to coordinate and advance our shared goals. "

First we take the house, then the world.

Ta Da!

2008-05-12T20:41:00.006-05:00

Thanks to the most Lovely and Amazing Rebecca, my lil' blogspot has gotten some new digs. Hopefully this format will be a bit more readable and a little less crowded...note the fancy pants tabs up top. For those of you looking for something new, I highly recommend Rebecca. Not only did she pimp this template, she also had to work with me on the new design. Just call me Nit Pickin' Whiney Pants. Anyhoo, obviously the woman can do anything.

In fact, just clicky click to see some of her other creations.

Kwisteena's Kwaziness

Life with Bubba and Chicky

Life with My Special K's

Mauzy's Musings

Megan's got 47

My Three Ankle Biters

Not that you asked

Pinwheels

Prince Vince Meets the World

Rhett's Journey

Ten Squares three squiggles

The Flege Family

Three Little Ladybugs

Hope you enjoy the new look!

The Cat's Out of the Bag...

2008-05-11T21:29:00.004-05:00

Yep. That sounds about right.

Happy Mother's Day fellow SuperMoms (that means you).

And Pinko Grammy, thanks for letting me borrow your cape for the last four years. It may have some new me-made holes in it, but it flies with the best of them.

Before Motherhood

2008-05-09T08:57:00.012-05:00

A long time ago in a galaxy far, far away, this was the reigning Lil' E:

And then I grew up and transferred the princess baton to my lil' E.

Note to readers: For all you snickering out there ("Lookie look! She is old as time"), these pictures may look like they were taken in the 1950's, but I assure you that was all my grandmother's doing...how I really rolled as a child can be found here.

In honor of our most sacred of holidays, Mother's Day, I have a meme to spread through Blogland. It's time to play tag everyone! Please don't hate me.

Before I was a mother I was:

1) Fearless

2) Self Centered (still true, but now the world revolves around the WonderBabes...and my trash television shows)

3) Pierced

4) Impulsive

5) Pretentious

As a mother I am:

1) Anxious

2) Nostalgic

3) Patient

4) Accepting

5) In possession of an ever increasingly bizarre sense of humor

Would the me of yesteryear like the me of today? Not so much. But that's cool, because the me of today would have to put on my slappin' gloves and go to town on lil' me.

However I'm thankful I once knew lil' me, because she grew into big me.

I wonder who I'll be next year?

Note to self - Less anxiety, more fearlessness.

So, for Michelle at Downblogger, The Portas (ok, this is just for one Porta) at Elijah Daniel, Me at Outnumbered by Kids, Nicole at All 4 My Gals, and Jodi at Reimer Reason, spill it...as in Tag! You're it!

May the force be with you.

And happy (almost) Mother's Day.

Go. Watch.

2008-05-08T09:22:00.005-05:00

Including Samuel looks like the goods. This documentary was made by not only photojournalist Dan Habib, but also Samuel's father. YouTube has an abridged preview available, which I'm inserting for the link challenged (ok, for me), but the official preview can be found here.

Did I mention that I loved, Loved, LOVED this preview and can't wait to get my hot little hands on the full feature film?

Methinks this is truly an important contribution to the disability community which explores the issues of inclusion and disability rights in depth and without fear. Inclusion has been the battle cry of the Disability Rights Movement since it's inception (and a great cry it is), but often those that choose an alternate route are frowned upon by their parental peers. From the snapshot of the preview, it doesn't seem as though the film is advocating either way, but rather sharing the very different experiences of four unique individuals and their families. Dare I say this appears to be well rounded and unbiased. Did I mention how touching and insightful our tiny little snapshot is? Definitely hankie time.

As we approach Emma's transition to Kindergarten, I couldn't have stumbled on this at a better time.

Samuel, I wonder if you know how adoring your fans really are...

I'll bet you do.

Speech, Speech!

2008-05-06T10:36:00.008-05:00

Meredith at Cornish Adoption Journey hath presented lil' ol' me with an award. A blogging award.

I don't even know what to say...

I guess I'd like to thank the little people in my life (those under four feet tall that go by the name WonderBabe) and, of course, their adoring fans (or minions, if you will). Without them I'd be blogging about my morning bagel (snore fest) and new shoes (less boring).

1. You have to pick 5 blogs that you consider deserve this award for their creativity, design, interesting material, and that contribute to the blogging community, no matter what language.
2. Each award has to have the name of the author and also a link to his/her blog.
3. Each award winner has to show the award and put the name and link to the blog that has given her/him the award itself.
4. The award winner and the one who has given the prize have to show the link of Arte y Pico blog, the origin of this award.
5. Post these rules.

Now that my speech is done (try not to be overwhelmed), I must pass the torch on...

Without further ado, I'd like to present this award to to some fine blogging friends. Get your trophy cases ready, ladies!

Awesome Mom at Adventures of an Awesome (sometimes) Mom. I'd like to amend that to Adventures of an always awesome mom. She makes me laugh out loud, and as far as I am concerned, what better contribution could a anyone make to the blogging community?

Nicole at All 4 My Gals - Design, content, regularity - definitely a deserving blogspot if I ever saw one.

Shannon at Gabi's World embodies creativity.

Kim at Congenital Heart Defect Awareness has single handily designed a gorgeous blog with buttons and elements galore and is chalk full of heart resources and information. Of course, would anyone expect less? It is the CHD blog, after all.

Nancy at Are We Having Fun Yet? keeps it real, which is no easy feat. Did I mention that she keeps it fresh too? Those are two major contributions to Blogland, sho' nuff!

So...tag ladies! You're it!

Oh, note to the gentlemen...where are you?

BADD Grand Rounds

2008-05-05T12:35:00.005-05:00

Well, I guess Grand Rounds is a bit of an exaggeration. That list is posted at Diary of a Goldfish, our fine Blogging Against Disablism Host. This years BADD has been phenomenal with so many essential insights and pivotal questions posted across the blogosphere, that I had an incredibly difficult time picking my favs amongst such fine work. These are just a few of the most notable standouts of this year's superb collection.

Note to readers - I haven't yet finished reading all of this year's entries, so this is likely a work in progress.

Kyron in the Special Parent posted this excellent examination about the impact of prenatal testing on society; one devoid of the abortion date but chalk full of ethical questions and considerations inherent in world that has the ability to choose which children should be born. Eugenics in today’s society is a BADD must.

The Room At the End of the Hall: When Integration = Segregation is Twinkle Little Star's insightful and thought provoking on inclusion shouldn't be missed. It is long, but so very worth it.

A big ol' shout out to Ms. DasiyBones, whose badd: blog against disablism day post you have to see to understand. You go with your crazy sexy badd self!

Frida Writes about visible societal perception of disability and invisible disability allegiance in Invisible People. Or, Compare and Contrast: WiMPS and GIMPS. Nicely done, Frida.

All 4 My Gals handed over the blogging reigns this BADD to Miss Tarenne in I Hate That Baby Talk. Let this be a lesson to all that haven't yet learned it:

"Even in Kindergarten when I wasn't much shorter, they would bend down and put their hands on their knees and talk to me like I was a baby. They looked so stupid and I would just roll my eyes at them."

I would roll my eyes too.

Against The Glass posted this amazing last minute entry that I fear may be overlooked because it was one of the last to arrive at the ball, but wowza, does it dance. “Off With Their Heads!” “Give us Barabbas!” and Other Musings About The Culture of Retribution shares this logical wisdom:

"It’s simple economics that an ounce of prevention is worth a pound of cure. Compassion is, therefore, the most economical way to create a better world. It’s time to grind the torches and pitchforks into plowshares, to lose our insatiable appetites for retribution, and hunger instead for a world of universal justice and love."

But it is the undeniable argument that will really speak to you. I hope the world is listening.

And finally, for now, I give you the strongly worded (translated - not for the faint of ear) Corrosive from Down In Me and SeaHorse's Look Back in Anger, both of which delve into the murky waters of the emotional impact of their disability related experiences. These are not good feeling power to the people posts; these are honest examinations of coping abilities in a climate of discrimination. They should not be missed.

Now, which were your favorite BADD posts and why?

Help me progress.

Dancing Around The Maypole

2008-05-05T10:21:00.027-05:00

Every year on the Sunday following May First there is a huge MayDay celebration in our corner of the globe. The last three years have rained out the festivities so this year was both Emma and Gabe's very first Mayday parade.

Once upon a time, in a galaxy long, long ago I was past of the festivities. Now, years later, I brought my children to enjoy a great community tradition.

Miss E had the best of seats...though Sir Snores Alot's shoulders beg to differ. Can anybody say Tylenol?

This festival also marked the first time we discovered that toddling Gabe is a runner - which is no small feat for a child that doesn't really know how to run yet. Gabe decided it was time to be free as the birdie kites around him and whoosh...he was gone. Again. And Again. Considering that a significant portion of the city was surrounding him, color me not thrilled. I actually fell down chasing him. Needless to say, the minute I could strap him down, I did.

Time to get our freak on!

Little Miss E was positively thrilled.

And for Sir Squeaks Alot...our before picture

And after.
Thank God.

And the fishy led the way home...

For Gabe's MayDay Cracker Smack Down clicky click here.

My Own Demons

2008-05-01T08:57:00.011-05:00

When Emma was about a year and a half I had a dream, a nightmare of a dream really; one that will stay with me forever.

I don't know about your nighttime escapades, but my dreamworld is a vivid world of (all too obvious) metaphor that dance across my pillow at night, ensnaring me in its web of never ending weirdness. It is a world that I have a hard time waking from and an even harder time shaking off. I can't shake it off because my Freudian dreamworld has the ability to provide my conscious self with insights that, apparently, my waking self would prefer to leave unsaid.

Stupid waking self.

Always getting me into trouble.

Years later the memory of the dream is faded and the details have blurred, but the sense of horror remains. The terror tore my tired body from sleep with a sense of urgency as if it were screaming "Don't forget me!". I woke up with tears streaming down my face, wrapped in sweat soaked blankets and with the realization that I needed to face some of my own demons...and soon.

I had always been proud of Emma's long flowing locks and, as odd as it may sound, her lovely round head. By the time she was just a year old her locks were already remarkable...especially for such a young child. They flowed to her shoulders by the the time she was a mere eighteen months old, silky and smooth, the color of wheat in the shade. Her head, as tiny as it was (and as it still is - you should see that growth chart; it's like a fall from a cliff) was perfectly circular, undaunted by sleeping on her back (which can create a bit of a lopsided head. You can read all about it in the newest parenting books. I kid you not). As her hair grew and thickened I would read of the oft quoted physical characteristics of Down syndrome, of which Emma had, and has, many. The two glaring absences were that of a flattened backside to her head and thin hair.

When Emma was a newborn I clung to those absent characteristics as though they foretold of a future for Emma that I feared less as I learned to accept the shape of her eyes, her foreshortened arms, her low set ears, and the extra skin on the back of her neck. Her neck fat dissipated by the time she was a few months old, and before long I found myself falling in love with the shape of her eyes and their brilliant color; her ears that showcased her pretty barrettes, and her chubby little hands that sat at the end of arms I no longer thought of as short.

Yet as Emma grew more beautiful by the day, I still clung like a mother bear with the force of a full set of claws to her typical traits; not realizing how tightly I was holding on. By the time that Emma turned one, I was fully in the throws of the Milestone Game. I insisted that Emma's extra chromosome wasn't nearly as a big of a deal as everyone made it out to be (which is still true...sometimes...in some ways) and that we would show the world how inherently unlimited and enabled Emma was (and still is). Emma was to be a WonderBabe that not only we couldn't deny, but one whose prowess couldn't be denied by the rest of the world either.

When it became obvious that she was struggling to climb back onto the dreaded milestone chart instead of soaring amongst it's peaks, I still believed, deeply, that while she was unique in every way, she wasn't truly different from other children. Or maybe a better way to put it is that her minute differences could be overcome; negated by all of her similarities - everyone could see that, couldn't they? Even better yet our life wasn't really affected by her extra chromosome; it wasn't all that different at all. We weren't all that different. And today, in many ways, that is still true.

And then I had the dream.

I am with Emma, feeling so proud indeed of her beauty and charm. I grab a nearby brush and begin combing her flowing locks when much to my utter horror, her hair comes right off with the brush. I pick up her fallen hair and realize that it is a wig. A long beautiful wig, but not a part of my Emma. I look at my lovely little girl and I can see now that all she has is just a few whisps of hair sticking out of her flat and misshapen head.

And she is crying.

In the dream I am horrified. I am disgusted, but not because Emma doesn't have any hair and the back of her head is flat as a board (as in you could play chess on it); I am horrified because I realize that she never had long flowing locks and a perfectly shaped head at all; all along it has been a wig. A wig I made her wear so the world would think her head was just like everybody elses, except, of course, more beautiful. I realize that I have forced her to cover herself for her entire life with the disguise of being somebody else.

And she is crying.

And I know I have failed her more than I ever thought possible. The guilt I feel is as overwhelming as the sadness I feel as I watch her cry.

I wish I could take it all back.

I throw away the wig and try to comfort her.

This is what woke me in the middle of the night, gasping for air and trying to remember who I was and the reality of my life. When the real world came flooding back and I remembered that Emma's lovely locks were real (or more poignantly that I hadn't been forcing my baby to wear a wig for the entirety of her existence), my relief washed through my entire body like a wave drowning away the terror of my nightmare and comforting my pounding heart.

Kinda.

That, that was my dream.

It was in that moment that I realized how precarious the path I walk with Emma can be. As her mother, her greatest advocate, and her biggest fan (though, in all honesty, I'm not the only one to lay claim to that status) I have to always remember to see her for her, in every single way. Her uniqueness, while certainly not bad, is different and can't, nor should it, be hidden away. She should be celebrated, not merely accepted, and in order to do that I have to always be honest about who she is. To deny the challenges that her extra chromosome present is to ignore the joys that wouldn't be possible without her little bit of extra. While I don't want to lower my expectations because she has Down syndrome, I also don't want to hold her accountable to unrealistic expectations that would eventually make her feel like a failure.

Ultimately her life should be about her expectations, not mine.

Life is hard enough as is it without tagging a child with that kind of baggage; especially my child. Because I love her. So. Much.

I desperately want Emma to be proud of who she is, in every way. She will never be able to do that if she sees me hide who she is under a wig of "normalcy", tucking her differences away so they only come out under the covers while I sleep. That is just as dangerous as the opposite - assigning her deficiency before she has even begun.

It is Emma who will determine her fate; it is her story to make. I may tell it, but it is she who writes it.

And every day I am making my fate; writing my own story, but always remembering the power my pen can have over hers.

Indeed freaky Dream O' Past, I will never forget. And if by chance my memory slips a little and somehow that nightmare isn't always just under the surface every time I slip into my old competitive ways, I know that you'll come back and remind me. And it won't be pretty.

Nor should it be.

Go. Do.

2008-04-30T09:21:00.004-05:00

Tomorrow is May 1st - an age old honored day representing the rebirth of spring and the emergence of growth. This will be the second year that Mayday isn't just celebrated by heathens and spring fanatics alike, but the blogosphere will be ripe with insight because it is also Blogging Against Disablism Day.

Blogging Against Disablism Day is an annual event in which disabled and non-disabled bloggers throughout the world unite in the cause of equality. On May 1st, bloggers shall write about their experiences, observations and thoughts about disability discrimination (disablism, sometimes ableism) and what we might do about it.

On my schedule for tomorrow:

1) Go to work (but my heart will be with Mother Nature)
2) Find a Maypole and dance around it with the WonderBabes.
3) Blog Against Disabilism.

Not necessarily in that order.

What is on your plate for tomorrow's festivities?

Go. Do.

Heartbreaking.

2008-04-30T08:38:00.006-05:00

Yesterday's Wall Street Journal published the heartbreaking article When Crisis Hits the Disabled: Limited Options for Support and Housing Exist for Aging Caregivers and Their Children.

Sigh.

This article begins with 79 year old Anna Dromgoole arriving at a Plano, TX hospital with leg wounds, accompanied by her son, 41 year old Kent Dromgoole, who has Down syndrome. She refused to be admitted unless Kent could stay with her - which he could, so she was. Sadly (so very, very sad), Anna went into respiratory and now Kent is alone. All alone.

Ms. Dromgoole refused to be admitted unless Mr. Dromgoole could stay with her.She, like thousands of other aging caregivers across the country, had no place for her developmentally disabled child to go. When crisis hits, they find themselves at the mercy of strangers.

This is one of my worst nightmares...leaving my precious Emma is such a frightening grief stricken situation without any supports. This cannot happen to her. Ever. It is so many shades of not okay I don't even know where to begin.

An estimated 2.9 million people with intellectual or developmental disabilities or some significant functional limitation live with caregivers -- mainly parents -- who are 55 years or older.

About 80,000 people with developmental disabilities nationwide are on waiting lists for various services to help them live in the community. Texas, alone, has about 35,000 people waiting for home and community services, in spite of funding last year to serve additional people.

Social Services at Plano Specialty Hospital in Texas are desperately trying to find a place for Kent to go. Beth Lambdin, Plano Specialty's clinical liaison, a stranger three short weeks ago, has taken Kent under her wing and has become his sole support. If no other means are found for him, she will take him home with her.

Ms. Lambdin continues to search for an appropriate local residence for Kent. If nothing materializes, she will bring Mr. Dromgoole home to live with her husband and three young daughters, ages 11, 9 and 5. The stairs on their split-level home would be hard for Kent, who weighs about 260 pounds, but not impossible.

"I've got feelers out everywhere," says Ms. Lambdin. "Unless by some miracle, someone comes in and says they have him covered, he'll come home with me."

Thank the gods for Ms. Lambdin. But not everyone has a Ms. Lambdin.

Not at all.

Profiles in Down Syndrome: Big D and Lil' K

2008-04-28T13:09:00.006-05:00

If you haven't yet met Daniel Drinker, you absolutely must.

Seriously.

Right now.

Daniel and his brother William are making a documentary together about Dan's life. A few of my favs are Dan's endorsement of Obama, My Brother Lifts Me Up, and, of course, Dan's First Date With Sarah.

As a parent of one with an extra chromosome and one without, wowza, this is like the Holy Grail.

*Note to the ensuing theory that it is a sociological law that the siblings of those with special needs will inevitably feel burdened by those needs - stick this in your pipe and smoke it.

Have met Kaia yet? Not only is Li' K one the most adorable little girls on the face of the planet (I kid you not...and I know the planet offers some stiff competition), but she has rhythm that should make us all jealous. For a three year old, none to shabby, eh?

Yeppers, Emma is 'bout to get a lesson in botty shakin' for sure.

You can learn all about her and her family at Outnumbered by Kids. Pretty much says it all, doesn't it? Ha Ha on them.

Note that I can only say that because while we feel outnumbered by kids, apparently the parent team to the kid ratio in my home is somehow evenly split. Considering that the score is usually Parents: 0, Kids:1, I'm in no position to be laughing at anyone.

So...what are you still doing here?

Oops...My Politics Are Showing Again

2008-04-28T10:18:00.008-05:00

I try to keep politics off my little blogspot as much as possible because Lovely and Amazing isn't about politics, but is about my adventures raising an atypical little girl in a society that revers normal. But, of course, since so much of what I write about is about ensuring a better future for Miss Emma Jayne, politics is inherently conjoined to inclusion in my quest - to the quest of all of you, like myself, trying to make the world a better place. However, my readers (dare I say I have readers - Whoo Hoo) are all from such vastly different backgrounds and ideologies, I oft worry that letting the true colors of my politics show through would be great for some...not so great for others. In a word - divisive.

Today I am taking a cue from B at Indoprism and letting my rainbow shine - just a tiny bit.

1) I am pro-choice. As in the ability for one to determine their own fate in all aspects of life is an integral part of my belief system. Yet, that doesn't negate the fact that every time I hear about the 90% termination rate concerning prenatal diagnoses of Down syndrome, my heart breaks a little more. It kills me to know that such a large percentage of the families in this country want a little girl - just not one like mine. I have a hard time believing that such a ginormous percentage rate isn't a reflection of society's acceptance of Down syndrome, disability, and cognitive impairments as a whole. The math doesn't paint none too pretty a picture.

2) I am against the death penalty - I don't believe the state should mandate birth or death. It's just too much power and the price of error is too high. Of course I say that as somebody who has never been personally involved. Personal vengeance seems all to appealing when I think of the unthinkable.

3) I am not a fan of the current administration. Not at all.

Those of you who read Lovely and Amazing regularly may have met my mother, Pinko Grammy. It turns out I may have not fallen so far from the tree after all.

Pinko - this is for you.

Even in spite of how contrived it is; how ridiculously improbable it is; let's review last Thursday's episode of Boston Legal.

You are going to love it.

I am not a dirty hippie. I swear.

Beyond the Valley of Cute

2008-04-26T12:09:00.005-05:00

First the promo:

Then the show...

I love this girl. So. Very. Much.

Plenty O' Praise for Perez

2008-04-24T13:29:00.007-05:00

Perez Hilton, infamous celebrity gossip (celebrity juice, not from concentrate) posted this on his blog today.

Note the label Inspiration.

Note the tone of, shall I dare say, sincerity.

Who knew?

Perez - I'm liking you more today than yesterday, and yes, Paris Hilton still sucks.

Insert smiley face.

*Note: Said smiley face doesn't negate the frowny face that a certain gossip king earned with the birth (or am I over crediting?) of the "celbutard"*

Emma and the Terrific, Happy, Extra Good, Very Perfect Day

2008-04-22T11:34:00.007-05:00

Sunday spring finally arrived. Sunshine, green grass, heat rays, the squeals of children, and the loafing of teenagers could be seen as far as they eye could take you. It was wonderful.

In honor of Madam Spring (apparently Mother Nature has stopped hating on us so much), Sir Snores Alot and I decided to pack the WonderBabes into their favorite double stroller (also known as their only double stroller) and journey to the park. The minute the stroller came out of the closet they couldn't get into it fast enough (seriously - Gabe is the dreaded Drop and Flop stage when he doesn't get exactly what he wants when he wants it; needless to say I was dragging that child to the stroller when I failed to deposit him in it within his alloted timeframe - 0.002 seconds after the reveal. Lovely stage. Really). After Gabers was securely strapped down (oh yes, he needs to be in restraints), he began patting Emma's seat in case we forgot where she goes.

And we were off!

Smiles were abundant; Emma's so wide that her eyes barely opened and Gabe's excited grunt spoke more than words ever could.

The park was overflowing with wild children as they ran like a wild herd. We tried not to get trampled. And yes, you should be frightened by a hundred children under ten. Very, very frightened.

Emma immediately ran to the baby swing of yesteryear - a swing which we had finally gotten her to give up for Gabe last summer.

Dangnabit.

"Emma, lets swing in the big girls' swing, okay? Then Gabe can swing there" and much to my shock, my willful wee one came running over and climbed right into the big girl swing. Color me impressed. She swang and swang as I pushed and tried to get her to pump with her legs (not so much); she was having the time of her life.

Doesn't she look happy?

And she was...until three minutes later when, on the height of the upswing, she fell right off the swing, somehow the playground gods turned her right over in midair, and left her to execute a bellyflop that made all the other children groan in empathy.

"That hurts" said one grubby li' kiddos as I picked up my sobbing girl.

Fast forward three minutes. Emma sighs heavily (you know, the shudder kind that only a crying child can make), visibly sucks it up, uncontorts her face, and climbs out of my arms. And she is off...

Thats my girl.

Off to the big kid equipment. Surprise! I'm not ready yet.

In case you missed Miss E because she is SO HIGH UP, here's a close up of my little speck on the horizon (can you tell she is my first?).

After the children had completely exhausted us, we lured them away from the playground with the promise of ice cream to come. Unlike the neverending "promise" of another five minutes (it's not my fault that ten seconds is the same as five minutes to them), this was one bribe we made good one. Yippee! I'm not always a liar.

When Gabe inhaled his ice cream in mere seconds (Warning Will Rogers, Warning), we decided to abort as soon as possible, get off the sugar high and take the WonderBabes home. After Gabe's obligatory Drop and Flop (which would be so much more effective if he weighed more than twenty five pounds), yet again we were off.

Once we arrived back at the homestead and our eyes adjusted back to sight from sun blindness (a common side effect of nine months of winter), I decided to do something special with Emma. Unfortunately our schedules more often collide than mesh, and it isn't often that we get to spend time together as a foursome. What's even more unusual is to spend time as a twosome (the rarest subset, of course, being Sir Snores Alot and me - apparently thats what the young folk call a date?). Emma loves her brother so very much, but it is important to have some girl power time too.

Much to Miss E's delight I packed her right into the car and took her to her very first theater movie. We saw Horton Hears a Who, ate popcorn, and drank Hi-C, as I tried to pry Emma out of her seat every time it tried to eat her (apparently there is a weight limit for keeping theater seats down and thirty five pounds isn't it). She was so good - staying with me the whole time, riding escalators and elevators, holding my hand when I asked her too. She was T.H.R.I.L.L.E.D; seriously - she was vibrating with excitement. I kept thinking my phone was ringing...but nope, it was just little E quaking in her seat.

After the movie, our date was still far from over. I took my lovely four year old out to dinner at a moderately fancy pants restaurant. Alright, it was the Cheesecake Factory so maybe it's not fancy pants at all for some people, but if I have a child wearing pants at the dinner table at all, we are wearing our best. Some Sliders, Pot stickers, Macaroni balls and half past bedtime later, it was time to call an end to Emma's Terrific, Happy, Extra Good, Very Perfect Day.

Did I mention that it was my Terrific, Happy, Extra Good, Very Perfect Day too? Yep, I'm feeling pretty darn tooted good about my parenting skills right now...and, of course, about my li' Emma Jayne.

And lord, is there anywhere I can take that child without people trying to get a piece of her? Seriously - in all my life I have never seen fawning like that. Though, in all fairness, Gabe's 'fro is giving her a run for her money (insert cheeky grin).

Disability in History: Aristotle Sucks

2008-04-21T10:42:00.013-05:00

How much do you know about Down syndrome in history?

Most of us know that John Langdon Down first described the characteristics of Down syndrome in 1866 and that Jérôme Lejeune in 1959 was the first person to identify the presence of the extra twenty first chromosome in people with Down syndrome. Most of us know that that until the seventies it was unheard of to raise a child with Down syndrome at home and that until the parent revolution of the seventies and eighties, it was virtually guaranteed that a child with Down syndrome would be institutionalized. Not that their weren't exceptions, of course; there were always those renegades who didn't buy into the prevailing thought easily summed up as "let us shun difference" of the nineteenth and and early twentieth centuries. Those renegades were truly the pioneers of disability advocacy.

Unfortunately they were far and few between as society lumped those with disabilities into the same category as other "incurables" and "wantons"; criminals, beggars, orphans, unwanted children, and those with mental illnesses all fell into the category of "degenerates". Degenerates that must be contained...first to protect them from the ills of society and then, in a nasty turn that coincided with the beginning of the twentieth century, to protect society from them.

As I have found out though, the specific history of Down syndrome and disability is much richer, and so much more horrid than the general history most of us became familiar with when we found ourselves in this community. As with the history of any group, there are early bloomers and stars in between the tyranny of societal perceptions and designations. Eventually, I would like to introduce them to you, if you haven't met already. But that is another post for another day.

Why, why for the love of god, would I want to share the sordid history of the oppression and brutality suffered by the ancestors of those we love? Because blogland, my favorite blogland, it is essential that those of us advocating for the rights of our children and our loved ones to be included with the full force of individual rights in a society that was borne of segregation and disempowerment. As with any minority that has suffered at the hands of a history fond of social constructs, in order to have a cohesive identity we must understand from whence we have come.

Might I add that it is also fundamental for the State of Florida understand the history of the those with developmental disabilities in order to fully grasp the rage I feel every time I hear about yet another Floridian special education class designed for "trainables" and "untrainables"...which of course makes me wonder which class much of the Floridian administration would be placed in.

The historical legacy of prejudice forced on the disability community still lives on today and that blogland, that is why I am posting today.

(Steps down from soap box pulpit, but reserves right to climb back up again)

Disability in History: Part I
______________
In The Beginning

Congenital malformations, defects, and differences have been long recognized through history and prehistory, long before they were identified and subcategories.

Written records of congenital malformations have come down from Babylon in the form of clay tablets from the Royal Library of Nineveh which was assembled by the Assyrian King Asshurbanipal (c.700 BC). These tablets include a list of sixty-two human malformations with their associated prophetic implications. It is believed that these records date back to 4000 BC.

The Maltese skeletal archaeological record shows evidence of congenital abnormalities which date to the Palaeolithic era, circa 18,000 years ago. Two teeth with taurodontism were found in association with remains of Cervus (deer). Taurodontism was a common feature in Homo neanderthalis, but in a minor form is also found in modern man, particularly in association with genetic anomalies such as the presence of an extra X or chromosome 21 and Prader Willi syndrome. 1

And. according to Charolotte Roberts in Never a Society That Suffered No Illness published in British Archaeology:

A 10th-11th century child with Down's Syndrome, who seems to have survived to about the age of nine, has been found at Breedon-on-the-Hill, Leicestershire; while a similar example dating from the Late Iron Age, at c 350BC, was found in Germany. Skeletons of people who survived with numerous other types of disabling illnesses are known...Life in the past has been described as `nasty, brutish, and short', but there is plenty of evidence of the survival of individuals in the past who were deformed or crippled from birth, suggesting some kind of care in the community.

It is generally assumed that modern society inherited our preconceptions of the "burdensome" impact of disability from the ancient Greeks, and, as the Romans stole everything they could get their greedy little hands on, this image of disability flourished under their empire. According to the Parallels in Time: A History of Developmental Disabilities (truly a fantastic overview of disability history)

While our Ancient Era is well-known for its contributions to philosophy,literature, and medicine, these were not the best of times for individuals with disabilities.

In Rome, children with disabilities were treated as objects of scorn. Children who were blind, deaf, or mentally retarded were publicly persecuted and reported to have been thrown in the Tiber river by their parents. Some children born with disabilities were mutilated to increase their value as beggars. Other children born with disabilities were left in the woods to die, their feet bound together to discourage anyone passing by from adopting them. In the military city of Sparta, the abandonment of "deformed and sickly" infants was a legal requirement.

And here you can find this:

Aristotle also recommended that there should be a law "to prevent the rearing of deformed children." In his Politics, Aristotle wrote "As to the exposure and rearing of children, let there be a law that no deformed child shall live."

(if I bought into the ancient definition of deformity which would most definitely include the lovely Miss Emma Jayne, I would throw her life in the face of Aristotle's tomb and yell "Suck on this!"...but I don't, so I won't.)

The Catholic Encyclopedia adds in Foundling Asylums, written by John A. Ryan and published in 1909:

Lycurgus and the Decemviri decreed that deformed children should be killed in the interests of healthy citizenship. Aristotle advocated the enactment of laws which would prescribe the exposure of deformed infants and also of all infants in excess of a socially useful number, and which would make the practice of abortion compulsory whenever it was required by the public welfare. In his opinion these measures should find a place in the ideal state, and in every existing community where they were not already approved by the laws and customs (Politics, vii, 16). Even Pliny and Seneca thought it wise sometimes to allow deformed and superfluous infants to perish. In the city of Rome two places were formally set aside for the exposure of infants who were unwelcome to their parents. The proportion of abandoned children that was rescued was very small, and the purposes for which they were rescued were cruelly selfish. Under Roman law they were slaves.

Before the rise of Hellenistic culture, Egypt was the man in the ancient world

and represented the first great civilization of the ancient world. Unfortunately, the classic ideal of beauty in Greek culture usurped the Egyptian one and it is a predominately Hellenistic discrimination against those with disabilities that the western world inherited. R. Sullivan in his paper Deformity - A modern Western prejudice With Ancient Origins, states that "In Ancient Egypt deformity was viewed favourably, even as a mark of divine beneficence, elevating those affected from all social strata to important magico-ritualistic positions." He further quotes Egyptologist Warren Dawson as saying "The Pharaohs of Egypt and their nobles, from the earliest times, had in their households dwarfs and other misshapen human beings". Archaeological evidence has ascertained that dwarfs were held in high regard in ancient Egypt and that their size was not viewed as a handicap.

Ancient Egypt is not the only place people with Down syndrome and other disabilities were, if not necessarily revered, then at least not ostracized according to some historians. It has long been theorized (and disputed, and theorized again) that the Mexican Olmec tribe which flourished from 1500 BC to AD300, created carvings, figurines, and sculptures represen ting adults with Down syndrome. Their wall reliefs often showcase the mating of their sacred totem, the jaguar, and their local women resulting in the birth of divine children. These children, in modern times, have been interpreted to have Down syndrome.

a) They were more frequently born to older and therefore more senior members of the tribe, b) only a few would survive which would give them something of rarity value, and c) they had the striking physical and facial features which represent Down syndrome, a phenomenon which called for reason. These characteristics were accommodated into the community and the differences regarded as sacred, giving people with Down syndrome religious and superhuman significance. 2

You can see some more pictures here.

As much as I love the idea of people and children with Down syndrome being revered as sacred peoples in the Olmec culture (worship Emma - now! Yes, gifts will be accepted), the similarities between the artifacts and characteristics of trisomy 21 are, in my amateur opinion. vague at best. That said, the theorists have presented a logical response to the emergence of genetic differences by ancient peoples. Really, what was any ancient cultures response to that which they didn't understand? A mythos which explained the randomness the ancients must have felt existed all around them. A mythos that is definitely preferable to Aristotle and the birth of Eugenics.

Now here, here is an example that I think is unavoidably a portrait of an infant with Down syndrome.

Terra-cotta portrait of an infant with Down syndrome from the Tolteca culture of Mexico cicrca the year 500. From the collection of Dr. Celso Rodriguez (1938-2001). Picture from The Real Earliest Historical Evidence of Down Syndrome written by Maria Luisa Martinez-Frias.

Long before the modern concept of Art for Art's sake, Art for Beauty's sake, and Art for Commission's sake, art was created to preserve history. This portrait was labored over because this child's story was important. Somebody loved this child and sought to immortalize him (or her...we could go either way on this, no?) for generations to come.

How cool is that?

Maybe it wasn't all bad, after all.

Thus it is a possibility (don't you agree) that disability wasn't totally abhorred outside of the western, Hellenic world. What exactly gave birth to the classical world's rejection of disability?

The Greeks and Romans in particular held a very narrow sense of self-image, believing they exemplified the ideal human type. With their contributions to art, philosophy, literature, and science, they viewed themselves as superior to all other races. Physical difference, in the form of a different ethnicity or a disability, was seen as a mark of inferiority. 3

Deformed children in Ancient Greece were viewed as an expression of divine anger according to the works of Hesiod. That's great. Just great. My child was born with a disability because I hath angered the gods. Talk about parental guilt. Might I point out how familiar this feels? Through both of my pregnancies I have a distinct recollection of eyeing up the peanut butter jar while contemplating the likelihood that I would subject the baby to a peanut butter allergy so horrible I couldn't even fully grasp it (and it's true - peanut allergies are horrible) if I dared to ingest such a substance.

You'll never know. Neither babe, as of yet, has demonstrated anything other than a ravenous admiration for what was once their foe; the peanut butter jar. Truly a gateway food into all the other no-nos of pregnancy - lunch meat, unpasteurized cheese, beer, and the list goes on.

But, I digress. Try to hide your shock.

At the end of the Archaic period in Greece (480 BC) the classic ideal of beauty began to emerge; an ideal that is epitomized by the search for physical perfection and the rejection of disfigurement. The physical being began to be seen as a reflection of the soul, and when deformity was depicted in classical art, it was that of mental anguish. This then, was a legacy the Romans, along with every other bit of Hellenic culture they could find, preserved well. Plato took it a step further in decreeing that the condition of the physical self was important for accession of the soul, and Cicero believed that the shape of the body determined the shape of the soul. 4

This then, this was the foundation for the prejudice assumed by modern society.

Great, Just great.

I am sure it was a difficult foundation to maintain, seeing as how the ancient world was often crippled by disease and famine. Which is exactly why the ideal persisted.

As if allowing a person with a disability to live in harmony with Roman society (or at least not be thrown to the lions or exposed on a mountaintop) was what brought Rome to its' knees. Rampant debauchery, political corruption, and excesses of every imaginable kind had nothing to do with the fall of Rome. Nope, nope, nope...in a world where a vomitorium just a piece of real estate, the last thing society can handle is someone with mental retardation or missing an arm.

As if.

How did the societal construct of disability change with the rise of Christianity and with a compassionate savior, known as the Great Healer? Did anybody ever slap Aristotle silly? Are there depictions of Down syndrome and disability in the great art of the Renaissance? What did the rise of the era of institutions means for the disability community? Will I get back on my pulpit again? Will all of this finally make me cuss?

Stay tuned for all this and more in the upcoming installments of Disability in History; a series that apparently isn't writing itself. Bad series, bad!

__________________________________________________
1 Savona-Ventura, Charles ( ) Historical Perspective Congenital Malformations: a historical perspective in a Mediterranean community
2 Stratford, B. & Gun, P. (1996) New Approaches to Down Syndrome, pg 4-5. Cassell: London, New York.
3 . Parells in Time: A History of Developemental Disability; The Ancient Era 1500 B.C - 475 A.D.

4. R. Sullivan, Deformity - A Modern Western Prejudice with Ancient Origins, pg. 1-2.

Welcome to the World Trig Paxson Van Palin

2008-04-21T09:11:00.012-05:00

Alaskan Governor Sarah Palin brought Trig, her fifth child, into the world Friday morning. She went into labor at the Republican Governors Association convention in Texas (I'd go into labor too to get a day pass out of there) and flew home.

The Palin family issued a statement that read: "Trig is beautiful and already adored by us. We knew through early testing he would face special challenges, and we feel privileged that God would entrust us with this gift and allow us unspeakable joy as he entered our lives."

For more clicky click here and for the current rumor that Trig has Down syndrome, clicky click here.

The name Trig is a Norse word meaning "true" and "brave victory," Leighow said. Paxson is an area of Alaska that both Palin and her husband, Todd, feel is "one of the most beautiful spots in Alaska," she added.

Congratulations Palin family! Whether or not Trig's special challenges are the result of an extra chromosome or not, welcome to the road less traveled. Our path has been paved with light...even when it is night. I hope your path will be paved with beauty as well.

And, blogland, keep your eyes on that there Governor.

Palin was asked at the forum whether or not she would accept an offer by Republican presidential candidate John McCain to share the national ticket as vice presidential nominee.

She said she would accept, according to reports from a Texas newspaper.

The world, it is a-changing.

Clown Car

2008-04-16T12:09:00.001-05:00

We have a clown car. It is our family car.

I kid you not (the choices you make as an unmarried, childless, twenty something couple...free, free as the wind).

When four human beings emerge from the shallow depths of our clown car, you can hear the jaw drop of everybody lucky enough to witness the Clown Car.

"No they didn't."

Yes, yes they did.

But the best thing about a Clown Car (no, no it's not the struggling to get inside or escape it's low riding clutches; it's not it's lack of storage capacity or the fact that Sir Snores Alot's head chafes against the sunroof) is not how many people we can cram in, but how close our quarters are.

Before.

After.

How cute is that?

*Note to cutest kiddlets - no poopy diapers or peanut butter sandwiches allowed. Please, for the love of god.

So. Very. Disappointed.

2008-04-14T10:42:00.009-05:00

Where o' where to begin?

Flashback to nine pm Saturday night. Two little kiddos in their footie jammies, tucked carefully into their beds for the night; one tired mommy making popcorn and positively twitterpated with excitement; one Pinko Grammy opening soda pop and curling up with a blanket.

There we sat as we began Lifetime Television for Women's movie version of The Memory Keeper's Daughter by Kim Edwards. Our expectations were low, but our giddiness couldn't be contained as we hit play on the infamous Tivo remote and began to watch a favorite novel unfold via the cheesiest and most stereotypical station on cable (yet, I do love it so).

Too Young to be a Dad and Dying to Belong - classic Lifetime movies. Just the right amount of trashiness, melodrama, and fingerpointing. If these movies were ever even books (dare I say novels even), I would find it hard to believe that they were readable or even aimed at an adult audience. Perfect Lifetime material.

The Memory Keeper's Daughter - not so much. This is actual literature; not one picture to be found amongst the plentiful pages. Oh Lifetime, I am so. very. disappointed.

To be blunt (because that's how I roll), Lifetime butchered an eloquent and subtle novel that illustrated the longlasting effects of entitlement, deception, and secrecy. When both the novel and the movie open we meet David and Norah, a young married couple awaiting the birth of their firstborn in 1965. Due to a tremendous snowstorm David, a "bone doctor", but a doctor in his own right, is forced to deliver the baby with the assistance of his nurse, Caroline Gill. Or shall I say babies. While Norah is high on the labor gas the medicos were so fond of before they began to realize that forceps are bad, much to David and Caroline's surprise twins are borne. Baby number one: perfect in every way; a boy, Paul. Baby number two (cue doom music): born with Down syndrome; a girl, Phoebe.

And, according to Lifetime, born at about 14 months gestation with lots of grape jelly.

Entitlement: David takes it upon himself to decide baby Phoebe's fate.
Deception: David sends Phoebe away in the arms of Caroline Gill to an institution where, as a mongoloid with a shortened life span, she will inevitably die. Alone. Not in front of her mother whom David has told lost her baby girl in childbirth; a lie told to spare her mother the pain of watching her "half brained" daughter die and to spare her father the pain of watching her live.
Secrecy: The deception is a secret that David and Caroline hold close to their hearts, away from the light of day.

The novel unfolds from this single moment, the moment that David sends Phoebe away and steals a daughter from his wife and his own life. The pages describe a deepening gap between David and Norah as his guilt and her grief tear their intimacy apart and leave them as virtual strangers under the same roof. Norah's pain takes the form of recklessness (can anyone say Happy Hour?) and emotional detachment while David becomes lost in photography; in trying to capture a moment (or rather re-capture the most important moment). Their son Paul grows up confused by their complicated relationship, jaded by love, and is forced to find his own way.

Phoebe, in comparison, thrives. Caroline Gill tried to obey the Doctor's calling (a Doctor whom she had the most serious of hots for), but couldn't justify leaving an infant in such a horrid place; in the institution David told her to abandon Phoebe in. Instead, she whisks Phoebe away and begins a new life as her mother.

The only one who is safe from guilt...whom is truly Innocent is Phoebe. And, the book wasn't about Phoebe; it was about the power of deception.

Obviously the novel shouldn't be underestimated, which is exactly what Lifetime did. It robbed the story of any nuance and subtlety and replaced them with painfully obvious metaphors and handholding as it led the (victimized) audience through wooden character renditions. All in all, a very poor attempt to convey the power of Kim Edward's words.

Essential supporting characters were removed from the movie as Norah's grief and David's guilt were glossed over and virtually ignored. The movie was awkward with rough transitions and little explanation. The character development that defines the novel was absent from the movie with the exception of Phoebe's character.

Now this, this is the only reason to watch The Memory Keeper's daughter - Krystal Hope Nausbaum, the ingenue who plays Phoebe as a young woman. Wowza! She was FANTASTIC and excepting Emily Watson (so, so underutilized as Caroline Gill) provided the only natural and engaging performance in the entire movie. Like Phoebe, Ms. Nausbaum also has Down syndrome and man, do I look forward to seeing her career skyrocket. Seriously. She was that good.

Of course, Google her name - nada. Google Gretchen Mol or Dermont Mulroney and you get hit after hit after hit...where is the justice in the world?

Their was one stellar scene between the younger Phoebe (played exceptionally well by newcoming cutie Emma Colbert) and Caroline. Phoebe curls up with her mother and asks for the "Funny Bunny" story; a story about a Funny Bunny that was really a Honey Bunny after all (no matter what the other bunnies said). How cute is that?

But back to what sucked.

1) Norah, in a freakish turn, never ages. The actress who plays Norah (Gretchen Mol) is maybe twenty five years old. The movie covers two decades...two decades in which her hairstyle never changes and while everyone around her grows older (signified only by the presence of gray hair, but signified nonetheless), she, if anything, actually gets younger.

Lifetime Television for Women, why o why would you ever try to present The Character Who Defied Time as a someone the audience, the almost exclusively female audience, is supposed to identify with or feel sympathetic towards? What is wrong with you? How much more could you alienate your target audience? Could she be rich, successful and in love too Oh wait, I just described Lifetime's Norah to a tee.

2) The wig. Oh. My. God. For some reason unknown to anybody but the gods, Lifetime felt it was necessary to cut down a hay field and make into a wig (likely sewn with yarn) for the unsuspecting Phoebe and Paul. I can only assume that this was a sad, sad attempt to emphasize their very "twin-ness" and liken them to each other. Apparently the ten dollars it would have cost to obtain a wig not made from straw way a deal breaker for Lifetime. After all, they did have to spend all that money on the fountain of youth for Norah's character.

Oh. My. God.

3) Filmed in Canada, yet set in Lexington, Kentucky. Need I say more about their accents? "Out in aboot in Kentucky". Very authentic.

4) The shortsighted editors (or was it a director sans any vision to begin with) cut out both the character of Norah's sister (who was a heavy player and whose inclusion bespoke much of Norah's own development) and the experience David has when he goes all looney like and runs off to the hillbilly hills of his childhood. There he stumbles upon a hostile and even better yet, pregnant, runaway living in his homestead shack. Through her, David searches for a redemption he will never find and tries to fill the void of Phoebe's absence. Obviously a pivotal character, yet again, completely absent from the movie. And by movie, I mean "movie".

I could go on, but what's the point? My heart goes out to Kim Edwards and the mockery that Lifetime Television (obviously not) for Women has made of her masterpiece. Dermont Mulroney should slap his agent silly, and Gretchen Mol's agent should slap her silly.

Someone definitely needs to be slapped.

Yay for Krystal Hope Nausbaum! She is one of the movie's few saving graces and is a discovery the casting director should be proud of. I know I am.

The other saving grace is one not so prominent in the novel. The novel is truly about the enormous and lifelong impact this deception had on everyone it touched, but the movie is much, much more focused on Phoebe's life and successes; sort of f"ear not special needs for ye don't know what ye has" kind of message; one reinforced by the happiness in Phoebe and Caroline's life and the distance in Norah and David's. As always, it's hard for me to watch a movie adaptation make such a significant change to the original text, but at least this message reached millions of people this week. Lifetime has a huge audience and they have spent a pretty penny promoting this movie. A movie that sucks and hijacks the novel for it's own means, but it is also a movie that showcases a beautiful, talented, and competent young actress with Down syndrome and tells the world "fear not". That is always a message I am up for hearing.

As long as women age.

If I have to do it, so does everyone else, dangnammit.

MakeOver Maddness Rages On

2008-04-11T13:27:00.005-05:00

Well, apparantly I own the little kitchen that couldn't. Hopefully by um, some time next week, the debris will have magically disappeared and the new face of our kitchen will proudly be displayed in Episode 3: The Kitchen That Could.

Today, instead I present you with (drumroll please)...

Episode 2: OMG! I Be a GrownUp

and I have a Home Office to Prove it

This, blogger friends, this is the room that once housed both of our children. Yeppers, it's about 9X10 and once we moved them out I immediately resigned myself to eternal damnation for making two children share such a small space for more than a year and a half.

But before the everlasting pit of fire consumes me, I'm taking all of my timeouts here. With a minute for each year I've lived, I'll be gettin' me some good time outs too!

Where I play computer. WonderLove does it too, except he calls it "working".

My shrine to county resources and medical care. Try not to be jealous.

Yes. That is a A.D.U.L.T loveseat in my purty office. Notice the lack of peanut butter, poop, and crayons. Purty. This is what I imagine retirement looks like.

A lifetime of craft projects and alter egos. Once upon a time I was a photographer, a writer, a painter, and a dancer. Now I am just covered in poo.

OMG! I have a craft/ girft wrapping station. Seriously. I'm so cool I can't get over myself.

Maybe now I'll finally start giving gifts...

Stay tuned eager beavers for next week's edition, hopefully starring a kitchen. Or, if things go bad, you may just see some crabilious self portraits, an adding machine, and the basement of woe.

*Would you like some woe? I have tons in my basement. Broken lamps, garage sale "treasures", fat clothes, skinny clothes, and all the crap Pinko Grammy keeps dumping on my porch. Just say the word and the woe can be yours!*

Friday's FREAKY Fortunes

2008-04-11T10:47:00.020-05:00

Ahh...Fortuna. How I love thee.

Even when you've been drinking.

Speaking of Friday's Freakiness, did you forget that we need to:

It's A Contest!

All the sordid details are here.

Whoo Hoo!

2008-04-10T23:00:00.004-05:00

You have got to see this commercial produced by The Foundation For A Better Life. It's called "Homecoming" and it makes my heart go pitter pat.

The mission of The Foundation for a Better Life, through various media efforts, is to encourage adherence to a set of quality values through personal accountability and by raising the level of expectations of performance of all individuals regardless of religion or race. Through these efforts, the Foundation wants to remind individuals they are accountable and empowered with the ability to take responsibility for their lives and to promote a set of values that sees them through their failures and capitalizes on their successes. An individual who takes responsibility for his or her actions will take care of his or her family, job, community, and country.

Amen.

But wait, it gets better!

If you happen to be one of the umpteenth million people that watch American Idol, you probably saw it in your living room tonight, because that was where it was aired.

Do you know how many people watch American Idol?

Whoo Hoo!

Unacceptable. Period.

2008-04-10T10:10:00.008-05:00

This morning as I drove to work, I made the mistake of listening to NPR...again. Now, don't get me wrong, I love NPR but wowza - do their stories get my blood a-boilin'.

So, by 7:15 am I was thoroughly pissed off.

What, you may ask, was the cause of my early morn saltiness?

SCHIP, baby, SCHIP. And by SCHIP I mean the State Children's Health Insurance Plan.

Kinda.

Or rather the changes that have been made to SCHIP and the children that are, once again, being left behind.

I highly encourage you to cruise over to NPR, read the intro to Proposal Favoring SCHIP's Poorest Kids Criticized by Julie Rovner and then listen to the actual story. May the shame begin.

During the course of the three minute story you will meet Paula Novak from Ohio. Because of this letter sent out last August by the Bush administration via the Center for Medicaid and Medicaid Services, Mrs. Novak has no found all three of her children without health insurance. Her youngest son, Seth, has Down syndrome.

Last year Seth had open heart surgery and today he is without health insurance. To date, among other numerous health services, he has missed his one year cardiology followup, his appointment for PE tube replacement, and no longer receives speech therapy.

This child is non-verbal and isn't allowed to have speech therapy.

This child had open heart surgery and isn't able to see a cardiologist for a followup visit. We found out that Gabe needed a second surgery within nine months of his first open heart surgery at a routine cardiology follow up appointment.

For the love of god, what are we becoming?

There are 44 million people uninsured in this country meaning they have no access to preventive health care at all, and the access they are afford is emergent only. If they can make it to the ER in time, that is. Of that 44 million people, 8.4 million are children, at least according to the US Census Bureau as of 2004. Whether or not the Census Bureau's figures are remotely accurate or if the Bureau even has the ability to provide accurate numbers, is a whole 'nother bag of worms. We'll just stick to this one, thank you very much. It's big enough already.

The new federal requirements for SCHIP, which need to be implemented by August of this year and met to receive funding, have reduced eligibility en masse and already forced many states to cancel their SCHIP expansion plans. Ohio is one such state.

Now, in order for states to provide enrollment in a program designed for those that fall into the ever widening crack between private insurance (as in not affordable) and Medicaid (as in they exceed income requirements) they must prove that 95% of families whose income is 2oo% or below the poverty level. Translated that means that before states are able to enroll higher income (oh, so subjective isn't it? Still not high enough to afford private insurance rates) they must have 95% of all of the families in their state that make $35,000.00 or less for a family of 3. Only after that has been documented may states continue to enroll families with an income of 250% above the poverty level (and by 250% I mean $44,000.00).

Yes, good luck proving a 95% enrollment rate for a demographic that the Census Bureau often cannot even locate and that may not seek access to government programs because of (just for example):

1) They may not have the resources to even be aware of such programs
2) They may not have obtained legal residence in this country
3) They may not reside at the same residence long enough to be counted

*Feel free to throw some more in*

These standards have been levied across the nation regardless state specific of cost of living or unemployment ratios.

Because $44,000.00 for a family of 3 in New York City is rolling in cash, ain't it?

Did I mention that states now have to prove that those that actually do qualify for enrollment in SCHIP have been uninsured for at least one year?

This is not okay. This will never be okay.

In 2007 Jeff and Paula Novak testified about their insurance nightmare to advocate for raising Ohio State's SCHIP income levels. Yesterday Paul Novak again testified because now her children have no insurance at all. You can also read about their advocacy efforts in 2007 (back when they still had health coverage) in The Columbus Dispatch's article Senate debates health-insurance options for children and in The People Behind the Numbers – A Message to the Ohio Legislature .

In the NPR story Dennis G. Smith of the Center for Medicaid and Medicaid Services (and the author of the aforementioned letter informing states of the newly minted SCHIP requirements) has the audacity to say that the new requirements will not be a problem as "9 states will meet the new threshold."

I kid you not.

Mr. Smith declines to comment on the effect the policy change will have on the other 41 states in the union.

Alan Weil, of the National Academy for State Health Policy, disagrees.

Higher eligibility is an effective means of attracting lower income children into the program. Broadening eligibility reinforces that health insurance programs are not tied to welfare and are designed for working families.

Obviously I disagree as well.

If I had a dollar for every insurance nightmare I have heard, especially from families of children with Down syndrome and Congenital heart defects, I would insure the world. Of course, I have my own story too and maybe, one day I will share it. For now, know that we are one of the lucky families - premiums through the roof, a high deductible, and insurance exceptions for (seriously - I'm not kidding) "Mental health care, intrauterine contraception, and (yep, our policy goes there) preventative health care", but the kids do have supplemental insurance through the state. God help us if I finally drive Sir Snores Alot bonkers, but Gabe is still able to have his cardiology followups.

For now at least.

Totally and completely, one hundred percent unacceptable.

We be ashamed.

Why Do They All Look The Same?

2008-04-09T14:55:00.005-05:00

Answer: Because you don't know how to see.

From the UK Shifting Perspectives calender project.

Hankie Warning Ahead.

It is a beautiful world, ain't it?

Wordless Wednesday

2008-04-09T10:33:00.011-05:00

It's a Contest!

2008-04-08T14:00:00.007-05:00

And you, my fine blogger friends, are all invited!

Freaky Friday is in need. Great need. Freaky Friday needs a button. Can't you just imagine it (cue fade in)...a button across cyberspace that in one single click takes both the unsuspecting and the suspecting too the entire collection of Freaky Friday posts! Wowza! There will be some much needed laughter in the world the day that happens...(cue fade out)

Unfortunately, I am not a button maker. It almost killed me to put words in the picture above. Which of my fine graphic friends can help Freaky Friday Find Its' Face?

I propose a contest of epic proportions (and I use epic only because it's been a while since I've used it and being a contest virgin, any submission would be epic)! You send me your buttons (with codes people, codes...let's not let me hurt myself trying to make them up myself, k?) and I'll dillgently post them for the masses to vote on. It will all be very democratic and civilized, no?

There will be prizes people, prizes. What will they be? That's a work in progress, but I can assure you that it wouldn't be anything packed away in my towering basement of terror. Nope, nope, nope - I would never do that...

This contest is a two weeker. Y'all have 14 days to submit your entries to moi. (clicky click)

The link to embed in the code is:

http://wonderbabe.blogspot.com/search/label/Freaky%20Friday

Let the countdown of creativity begin!

Spread the word cyber friends - let the button making world know there is a blog in desperate need of help!

Heartbroken

2008-04-08T08:07:00.015-05:00

Melissa Riggio, a songwriter, poet, and self advocate in the Down syndrome community, lost her battle with Leukemia yesterday morning at the tender age of 20. She was featured in the National Geographic Kids' article I Have Down Syndrome—Know Me Before You Judge Me in 2007 and inspired a whole generation of parents and children.

Her father, Stephen Riggio, is the CEO of Barnes & Noble and a prominent member of the Down syndrome community as well. It is because of the effect Melissa had on her family that Barnes & Noble picked up and gallantly promoted the Gifts book.

I only hope that Melissa knew how many lives that she touched. We will forever feel the vibrations of such a powerful life.

Please take a moment to think of Melissa, her family, and what the world lost yesterday.

The Ring

I'm in the Ring outside
I'm following my belief
I'm looking at the sky
I saw God following my heart
I'm an ordinary woman

The Ring is falling down my way
The wind is blowing me away
The Ring is falling down, down my way
The wind is blowing me away

And so I came back to
The center of the Ring
Am I just a broken angel?
God has sent me here to heal
To be an ordinary woman

- Melissa Riggio

Love is a Potion

Love is everything
Love is all around
Love is not hopeless
Love is passion
Love will not stop
Love is an ocean

- Melissa Riggio

I Heart The New York Times

2008-04-07T13:07:00.011-05:00

2008 marks the year that The New York Times began exploring prenatal testing and the impact it is having on the Down syndrome community. This recent interest was spurred by The American College of Obstetricians and Gynecologists and the recommendation they released in 2007 that all women, regardless of age, should screen for Down syndrome. And thus the birth of a great controversy and ongoing debate about genetic testing and it's ethical implications ensued...yada, yada, yada". Yes, we have all heard about that by now, but what was a pleasant surprise was all the positive press that the Down syndrome community generated. There is no better venue that this has been illustrated other than the nationally renowned New York Times.

Here is a taste.

Amy Harmon wrote the groundbreaking article Prenatal Test Puts Down Syndrome in Hard Focus which featured many advocates in the Down syndrome community and followed that up with a video piece entitled Down Syndrome: Concerns Over Genetic Testing which you can watch here. Another video story is also up on the New York Times website which has been aptly called Difficult Diagnosis : A Positive Perspective.

While three features may not seem all that impressive - it truly is.

The NY Times is my new boyfriend. I am so in love right now.

Yeah, baby!

*Oh...let's not share this with Sir Snores Alot, eh? I'm pretty sure he won't be thrilled to compete with a newspaper for my affection.*

Where Will You Be Saturday Night?

2008-04-07T10:55:00.010-05:00

I will be planted on my couch, snuggled up with munchies and Kleenex, eagerly anticipating the premiere of Kim Edward's The Memory Keeper's D aughter in technicolor by Lifetime, Television for Women.

Even in spite of the Lifetime logo, I have high hopes. They would be higher if Lifetime (my favorite vice - but not one known for quality as much as over dramatization of evil men) wasn't involved, but maybe this is the one they got right.

This stunning novel begins on a winter night in 1964, when a blizzard forces Dr. David Henry to deliver his own twins.

His son, born first, is perfectly healthy, but the doctor immediately recognizes that his daughter has Down syndrome. For motives he tells himself are good, he makes a split-second decision that will haunt all their lives forever. He asks his nurse, Caroline, to take the baby away to an institution. Instead, she disappears into another city to raise the child as her own. Compulsively readable and deeply moving, The Memory Keeper's Daughter is a brilliantly crafted story of parallel lives, familial secrets, and the redemptive power of love.

Might I add that I loved this book? Kim Edwards' character development, for the most part, is a thing of beauty. While I admired her depiction of Phoebe, the child with Down syndrome, I did think her character was the most under developed - the only one that wasn't three dimensional. I also felt the end was rushed and felt anti-climatic after such a dramatic build up. However, even in light of the misses in the book, it is still a great novel...a piece of literature. I am thrilled to see it realized on the little big screen and am so giddy I can hardly wait.

I've already bought my popcorn and picked out my movie watchin' jammies.

Forty Years later

2008-04-04T12:23:00.026-05:00

Today is the 40 year anniversary since the assassination of Dr. Martin Luther King, Jr.

It has been forty years since this man gave his life for a great cause - that of equality.

We are all living his legacy today. We should all honor his name and never forget his most profound words:

"Injustice anywhere is a threat to justice everywhere."

The last speech of Martin Luther King, Jr.'s life

April 3, 1968

I am happy to join with you today in what will go down in history as the greatest demonstration for freedom in the history of our nation.

Five score years ago, a great American, in whose symbolic shadow we stand today, signed the Emancipation Proclamation. This momentous decree came as a great beacon light of hope to millions of Negro slaves who had been seared in the flames of withering injustice. It came as a joyous daybreak to end the long night of their
captivity.

But one hundred years later, the Negro still is not free. One hundred years later, the life of the Negro is still sadly crippled by the manacles of segregation and the chains of discrimination. One hundred years later, the Negro lives on a lonely island of poverty in the midst of a vast ocean of material prosperity. One hundred years later, the Negro is still languished in the corners of American society and finds himself an exile in his own land. And so we've come here today to dramatize a shameful condition.

In a sense we've come to our nation's capital to cash a check. When the architects of our republic wrote the magnificent words of the Constitution and the Declaration of Independence, they were signing a promissory note to which every American was to fall heir. This note was a promise that all men, yes,black men as well as white men, would be guaranteed the "unalienable Rights" of "Life, Liberty and the pursuit of Happiness." It is obvious today that America has defaulted on this promissory note, insofar as her citizens of color are concerned. Instead of honoring this sacred obligation, America has given the Negro people a bad check, a check which has come back marked "insufficient funds."

But we refuse to believe that the bank of justice is bankrupt. We refuse to believe that there are insufficient funds in the great vaults of opportunity of this nation. And so, we've come to cash this check, a check that will give us upon demand the riches of freedom and the security of justice.

We have also come to this hallowed spot to remind America of the fierce urgency of Now. This is no time to engage in the luxury of cooling off or to take the tranquilizing drug of gradualism. Now is the time to make real the promises of democracy. Now is the time to rise from the dark and desolate valley of segregation to the sunlit path of racial justice. Now is the time to lift our nation from the quicksands of racial injustice to the solid rock of brotherhood. Now is the time to make justice a reality for all of God's children.

It would be fatal for the nation to overlook the urgency of the moment. This sweltering summer of the Negro's legitimate discontent will not pass until there is an invigorating autumn of freedom and equality. Nineteen sixty-three is not an end, but a beginning. And those who hope that the Negro needed to blow off steam and will now be content will have a rude awakening if the nation returns to business as usual. And there will be neither rest nor tranquility in America until the Negro is granted his citizenship rights. The whirlwinds of revolt will continue to shake the
foundations of our nation until the bright day of justice emerges.

But there is something that I must say to my people, who stand on the warm threshold which leads into the palace of justice: In the process of gaining our rightful place, we must not be guilty of wrongful deeds. Let us not seek to satisfy our thirst for freedom by drinking from the cup of bitterness and hatred. We must forever conduct our struggle on the high plane of dignity and discipline. We must not allow our creative protest to degenerate into physical violence. Again and again, we must rise to the majestic heights of meeting physical force with soul force.

The marvelous new militancy which has engulfed the Negro community must not lead us to a distrust of all white people, for many of our white brothers, as evidenced by their presence here today, have come to realize that their destiny is tied up with our destiny. And they have come to realize that their freedom is inextricably bound to our freedom.

We cannot walk alone.

And as we walk, we must make the pledge that we shall always march ahead.

We cannot turn back.

There are those who are asking the devotees of civil rights, "When will you be satisfied?" We can never be satisfied as long as the Negro is the victim of the unspeakable horrors of police brutality. We can never be satisfied as long as our bodies, heavy with the fatigue of travel, cannot gain lodging in the motels of the highways and the hotels of the cities. *We cannot be satisfied as long as the negro's basic mobility is from a smaller ghetto to a larger one. We can never be satisfied as long as our children are stripped of their self-hood and robbed of their dignity by a sign stating: "For Whites Only."* We cannot be satisfied as long as a Negro in Mississippi cannot vote and a Negro in New York believes he has nothing for which to vote. No, no, we are not satisfied, and we will not be satisfied until "justice rolls down like waters, and righteousness like a mighty stream."¹

I am not unmindful that some of you have come here out of great trials and tribulations. Some of you have come fresh from narrow jail cells. And some of you have come from areas where your quest -- quest for freedom left you battered by the storms of persecution and staggered by the winds of police brutality. You have been the veterans of creative suffering. Continue to work with the faith that unearned suffering is redemptive. Go back to Mississippi, go back to Alabama, go back to South Carolina, go back to Georgia, go back to Louisiana, go back to the slums and ghettos of our northern cities, knowing that somehow this situation can and will be changed. Let us not wallow in the valley of despair, I say to you today, my friends. And so even though we face the difficulties of today and tomorrow, I still have a dream. It is a dream deeply rooted in the American dream.

I have a dream that one day this nation will rise up and live out the true meaning of its creed: "We hold these truths to be self-evident, that all men are created equal."

I have a dream that one day on the red hills of Georgia, the sons of former slaves and the sons of former slave owners will be able to sit down together at the table of brotherhood.

I have a dream that one day even the state of Mississippi, a state sweltering with the heat of injustice, sweltering with the heat of oppression, will be transformed into an oasis of freedom and justice.

I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin but by the content of their character.

I have a dream today!

I have a dream that one day, down in Alabama, with its vicious racists, with its governor having his lips dripping with the words of "interposition" and "nullification" -- one day right there in Alabama little black boys and black girls will be able to join hands with little white boys and white girls as sisters and brothers.

I have a dream today!

I have a dream that one day every valley shall be exalted, and every hill and mountain shall be made low, the rough places will be made plain, and the crooked places will be made straight; "and the glory of the Lord shall be revealed and all flesh shall see it together."²

This is our hope, and this is the faith that I go back to the South with.

With this faith, we will be able to hew out of the mountain of despair a stone of hope. With this faith, we will be able to transform the jangling discords of our nation into a beautiful symphony of brotherhood. With this faith, we will be able to work together, to pray together, to struggle together, to go to jail together, to stand up for freedom together, knowing that we will be free one day.

And this will be the day -- this will be the day when all of God's children will be able to sing with new meaning:

My country 'tis of thee, sweet land of liberty, of thee I sing.
Land where my fathers died, land of the Pilgrim's pride,
From every mountainside, let freedom ring!

And if America is to be a great nation, this must become true.
And so let freedom ring from the prodigious hilltops of New Hampshire.
Let freedom ring from the mighty mountains of New York.
Let freedom ring from the heightening Alleghenies of Pennsylvania.
Let freedom ring from the snow-capped Rockies of Colorado.
Let freedom ring from the curvaceous slopes of California.

But not only that:

Let freedom ring from Stone Mountain of Georgia.
Let freedom ringfrom Lookout Mountain of Tennessee.
Let freedom ring from every hill and molehill of Mississippi.
From every mountainside, let freedom ring.

And when this happens, when we allow freedom ring, when we let it ring from every village and every hamlet, from every state and every city, we will be able to speed up that day when all of God's children, black men and white men, Jews and Gentiles, Protestants and Catholics, will be able to join hands and sing in the words of the old Negro spiritual:

Free at last! Free at last!
Thank God Almighty, we are free at last!³

Kennedy's sorrowful announcement of Martin Luther King, Jr.'s death

Forty years later, he is still a hero.
One hundred and forty years from now he will be a hero

He changed the world.

Instead of living on his knees, he died on his feet.

What a way to live.

Martin Luther King, Jr. 1/5/29 - 4/4/68

Thank you.

Friday is Freakishly Fun!

2008-04-04T09:33:00.014-05:00

Seriously.

If I didn't already have a sufficent supply, this is something I might advertise for

Taunt, much?

No they didn't.

Flattery Will Get You Everywhere...

2008-04-03T12:41:00.009-05:00

Imagine my surprise when I opened my email in the not so distant past and discovered what was in essence, a press release from an author promoting his new book. A press release with my name on it. Me, often suffering from blog abandonment and possessing the attnetion span of a piece of bellybutton lint. Little ol' me...just running a personal parenting blog catered to the disability community.

Wowza. Color me flattered.

I have recently received the promised promotional copy of The Short Bus: A Journey Beyond Normal written by Jonathan Mooney, complete with a note from his agent.

Wowza. Color me impressed.

I have only just begun reading the novel, but so far I am LOVING it. The language is often strong and may offend more fragile ears, but it's honest. Honest and earnest (two of my favorite qualities in just about anything, especially writing). Honest, earnest, and funny. Laugh out loud funny.

I am on the fence about the repeated use of the term "tard", a term which normally makes me shudder in disgust and go off in a frantic search for my slappin' gloves (quite a pretty pair, if I don't say so myself), but my reaction in this case has been negated; negated because this book, so far, presents a perfect example of the sort of "take the word back" movement that has been seen in oppressed demographics all over the country, most notably in the gay community...for now at least. Obviously as a parent of someone likely to be called a variation of the term as she gets older, my natural instict is to destroy whomever would hurt my baby, but if Emma was to grow up and use the term herself in reference to the way she has been catagorized by society, I may feel a bit differently. However I feel though, it will always be as a parent of a child with Down syndrome, never as a person with Down syndrome growing up in a society where I am so the minority. Our experiences may be intertwined and ever connected; empathetic and important, but not the same.

In light of the realization of what will be Emma's entirely unique experience, I may want her to say whatever the h*ll she wants.

Continuing on...here is an excerpt from the beginning of the book that I believe is just so on point. In fact it is so on point that I am willing to give Mr. Mooney the benefit of the doubt when employing the word "tard"; that he is using his power for good and not evil; that he is using his power to describe how fundamentally alienating it is to be labeled as something that society views as defective and as a threat to the allmighty normalcy we should all want to achieve; that he is using this word with pride in many cases as he rejects the notion of normalacy altogether.

I realized what the short bus is all about: It serves a social function. Our myth of who we are, who we should be, is actually created by categorizing people with disabilities. Disability is inherently a negation. In our culture, people with disabilties standmore for what they are not that what they are - not normal, not whole - a negation that calls into being its opposite: the normal. The normal looms over all of our lives, an impossible goal that we are told is possible if: if we sit still, if we buy certain consumer goods, if we exercise, if we fix our teeth, if we...The short bus policies that terrain; it patrols a fabricated social boundary demarcating what is helathy and sick, acceptable and broken, enforcing normalcy in all of us. What had I lost in trying to belong to the other side?

And the synopsis from the jacket itself:

A young man once labeled “severely learning disabled” journeys across America to find others who have used humor, imagination, and resiliency to create satisfying lives beyond “normal.”

When his teachers decided Jonathan Mooney needed special ed because he couldn’t follow directions, sit still, or read well, he feared he’d lost his chance to be a regular kid. Suddenly he was “not normal.” Suddenly he was a short-bus rider destined to travel a harder road, a distinction that screamed out his “difference” to a hostile world. Along with other kids facing similar challenges, he was denigrated daily. He almost lost hope. Yet ultimately, Jon shocked the skeptics, graduating from Brown University (with honors). But he could never shake the voice that insisted he would always be “less than.”

So he hit the road. To free himself, he dreamed up an epic journey across the U.S. on a broken-down short bus. This inspiring record of his odyssey documents Mooney’s search to help himself by learning from others once labeled abnormal who had learned to live in beautifully original ways. He meets Ashley, a deaf and blind girl who curses out her teachers in sign language; Kent, a performance artist with attention deficit hyperactivity disorder (ADHD) who loves “yo mama” jokes and may just be the new Andy Kaufman; Jeff, an obsessive eccentric whom society would label autistic, keeps unadorned lists that describe his world in unexpectedly moving ways. These people confirm his belief that “normal” is a state that no one actually visits. Everyone, Jon discovers, must embrace even their most radical differences.

Propelled by a unique writer’s heart, mind, and spirit, The Short Bus is a rebellious, funny, and incredibly colorful investigation of life lived happily outside the lines.

Stay tuned for more of my riveting review. You'll know it as soon as I know it.

MakeOver MADNESS!

2008-04-02T15:03:00.014-05:00

Well, well...where have I been you might, by chance, be a-wondering.

Let's see. First there was the holidays (nuff said). After many time outs, tears, and a our customary battery removal frenzy (Oh, sweetie, your barking piano seems to be broken. That's too bad). then we actually decided it would be a good idea to work in some home improvements. We thought hey, let's cover the house in paint many times over, increase the efficiency of our modest abode, and reduce the uggo factor all at the same time!

No biggie. Some paint. Maybe new counter tops. New light fixtures.

Danger Will Robinson, Danger!

It's easy to paint cabinets, right?

I said "Danger Will Robinson, Danger!"

They do it all the time on HGTV. It only takes about 24 hours and costs around $40.00 AND that includes the exterior of the house too!

WRONG.

I hate HGTV.

That is a show of lies if I ever saw one.

It seems I have found myself a new arch nemesis.

But I digress...

This post is the first in a series exploring my new and improved house. If I can squeeze myself into our basement (of fear) between the discarded furniture, loads of useless crappola, various equipment and sundries, and you guessed it - endless gallons of expensive paint - long enough to snap a picture it will be the most fun. At this point our basement is like another country; a third world country; annexed into the abyss and existing only to shame us. I think the majority of my underwear is still down there though - lord knows it isn't anywhere where I can find it.

Episode One: The Kidlets Room

Featuring an entirely new room! Once we realized it was harboring on cruel and unusual to force two small children to share a 9X10 room, we went ahead and took the plunge. We switched it with our home office - a remnant from a previous life; a childless life.

Have you ever switched two rooms, both full of crap? Of kid crap? It was horrible.

________________________
*Note the painted woodwork (boy, was that fun), which normally I would never even consider, but once we realized that our "woodwork" was only given that name out of lack of a better word, we took the plunge. *

And, thanks to Becky B and her crafty ways at PoshDots, we have the bestest personalized name letters ever!

So far, the WonderBabes love it. They show me every single day by destroying it. It's fun for mommy to clean up.

Other than a random screw falling out of Gabe's footie jammies (I kid you not), they don't seem significantly damaged by the move. Maybe a bit traumatized...but any child of mine would be anyway.

Stay tuned for next weeks installment: The kitchen that could...or couldn't it?

Contemplating Old Professor Grumpus

2008-04-01T10:50:00.009-05:00

If you missed the HulaBaloo regarding UNC Professor Albert Harris, which I wrote about here, the controversy raged on when the National Down Syndrome Society issued an official response to his fateful comments. As always, I am the latest to the ball, but I've spent a bit of time considering Old Professor Grumpus, the media onslaught, and his decried victimization and now I want to put my dancin' shoes back on.

This editorial entitled Educated Debate was printed in response to said HulaBaloo by the UNC campus newspaper, The Daily Tar Heel.

Harris made it clear that it was his own opinion, not a statement of fact,and he has the right to include it if he feels it is relevant to his lecture.

We hope students are smart enough to be able to distinguish between classroom material and a professor's opinion.

And while we disagree with Harris' commentary, the dialogue induced by controversial statements is vital to the intellectual climate in Chapel Hill.

The job of faculty is not just to administer facts via death-by-PowerPoint, but also to spur the critical viewing and discourse of course material by the students. Hand in hand with critical analysis of information comes an educated opinion.

And

Challenge your professor's opinions; partake in intellectual sparring. As inquisitive minds at a top-tier university, we should seek to be challenged by our instructors and enhance our education by being eager combatants in the arena of academic discourse.

While I'll leave the expectation that students should rather than begin a quest for knowledge, instead be prepared for combat in the minefield of academia well enough alone, of course I can't leave it all well enough alone, can I?

I understand this argument. I certainly had more than one professor that, in essence, harassed me into critical thought by offending me. Not my favorite tactic, as I previously pointed out, but one that is age old and useful in certain situations.

This situation though, after a moment of reflection, is a bit different...whether or not the UNC staff writers realize it.

The reason that it is different is the same reason my anger at Old Professor Grumpus' public commentary wasn't based on his grossly outdated information (which at the least is in the poorest of taste to present in a high education institution and is something UNC should be concerned about. Can anybody say standards?) or on his presentation of opinion as fact (though, again, not an attribute). While this was the gist of my previous indictment of Old Professor Grumpus, after some consideration my response has evolved somewhat...as hopefully Old Professor Grumpus will too.

What really pulled my chain; hemmed my heifer; ruffled my mohawk, and made me downright crabby (truly - no fun for anyone), was regardless of truth, tactics, or motivation, Old Professor Grumpus felt completely comfortable in a lecture hall with the full authority of his power position, to use an entire class of people, of protected people, to make a point advocating the virtual dissemination and extinction of that very community.

Our nearsighted professor obviously used the criteria of suffering for his lecture on genetics and quality of life, during which he issued this winner “I know somebody who had a child like this, and it ruined their life”. Excuse me while I vomit. Continuing on...

What if the professor's basis for determining suffering wasn't the dreaded (it's the end of the world!) Mental Retardation, but instead hunger, injustice, torture, fear or any of the endless nouns that cause suffering? In judging the quality of life of others (a pathos of entitlement I detest), I'm guessing it wouldn't be unheard of to surmise that those born in Iraq, born with HIV, or even born in the ghetto might not be born in the best of situations right now. Would Old Professor Grumpus feel comfortable issuing a widespread call for abortions for fetuses borne in war, with HIV, or in poverty? Can you see the headlines now "Professor Angers Students with Abortion Remarks: Abort all Ghetto Babies (they'll just go on food stamps anyway)" Or "Iraq - Abortions for All".

No, you can't see it because it would never happen.

While the intellectuals of the world may cry academic freedom even they realize that there is a line. A professor would never be allowed to issue remarks during a lecture that would disparage another race or class in such a manner - whether they would do so in private or not - because it wouldn't be tolerated.

After hundreds of years of racism, sexism and classicism, there is a line that modern society has created. Even the most bitter of racists knows you can't go spouting off off the N-word in public; the most outspoken classist knows you can go around calling for those on welfare to be sterilized...not in mixed company at least; Most of modern society requires the isms of the world to be kept out of the public eye (only your friends should know how much of an jackbutt you really are) or at least should be subtle enough to avoid the censor flag and should be prefaced with "I'm not a _______, my best friend is ______"; but if you want to call somebody retarded, that's just fine. You can put that in a commercial during prime time.

Hell, you can even tell a class of university students they are morally obligated to abort fetuses with Down syndrome! You don't even need to preface that because nobody's best friend has Down syndrome! WooHoo!

So, should I tell you how I really feel then?

There is a line in academia which reflects the line in society. What bothers me more than anything about Old Professor Grumpus and his ill fated commentary, even in light of his supposed moral absolutism, his opinion favoring extinction for an entire class of people, his misinformation regarding Down syndrome, and his justification of his actions in the light of academic freedom, is that it has pointed out, oh so painfully, that we are on the wrong side of that line.

After all that the Down syndrome community has accomplished, we are still on the wrong side of the line.

It is still acceptable by a university for a professor to tell the world that it has a moral obligation to make sure that people with mental retardation don't exist.

That is so many shades of not okay that I just want to throw down my paintbrush altogether.

And while I do have some sympathy for the Professor - one who seems to be old school, trying to motivate his class by playing Devil's Advocate, and who appears to be completely bewildered by the controversy and media attention he has incurred, it is important that this is a controversy. It is important that it does play out in the media. It is important that this line is challenged in public.

While his university may not hold him accountable, it is imperative that as much of society as possible does.

The thing about freedom (and by the way, I am a BIG fan) is that yours ends where mine begins. When Mr. Grumpus told the world that the Emma Jaynes of the world should become extinct, he stole her freedom from her. Period.

The auspices of academia don't change that.