Tuesday, March 31, 2009

Choices

I knew this time would come, I just didn't know it would be so soon.

When I got married almost three years ago, it was pretty obvious that I was marrying into the military. I mean, seriously, the man standing next to me was wearing a uniform. Was there any doubt that during the 13 years to follow that there would be at least several moves?

No, not really.

We still have about one and a half years left here, but already we have to start thinking about where to go next.

So far, it looks like the choices are between the Seattle, San Diego, and Norfolk areas.

If it were all about me, I'd choose San Diego. Great weather, beaches, friends nearby, not too far of a move from where we are now, etc.

But it's not about me. It's about Playette and what's best for her. We have to think about the fact that she'll be three years old, into IEP-land, and needing some good preparation for starting school.

Basically, we just need to research these three places and rank them for the detailer (person who decides BD's next duty station).

I'm coming to you all for feedback. What do you know? What have you heard? What would you do?

Any info on any of these areas would be extremely helpful. The blogosphere reaches far and wide. Maybe you know someone who knows someone?

Today's the Day!



My personal reasons why I find this hurtful.



You can take the pledge here.


Sunday, March 29, 2009

Law and Order: SVU

After Educating Peter, I checked out an episode of L&O:SVU.

I became a huge fan of this show while struggling to breastfeed Playette in her early months. Once I got to the point that I realized that she was not going to cooperate whether I used a nipple shield, tinctures, tea, a Supplemental Nursing System, finger feeding, syringes, or just about any other method you can think of (we tried them all), the pump became my friend. And then my enemy. But that's a whole 'nother story.

Anyway, so I pumped day in and day out. Hours a day. Always on schedule, whether it was an "every 3 hours" day or a "every 5 minutes marathon" kinda day. I was up a lot. A LOT. So, in turn, I watched a lot of L&O.

When you're not sleeping, characters are welcome.

It had been quite a while since I'd settled in for a good episode, so I was very interested in seeing what my good ole TiVo WishList had recorded for me.

Per Wikipedia, here's a description:

"Competence"
May 10, 2002

Rebecca Tolliver (played by Lois Smith) reports her twenty-two year-old daughter with Down Syndrome (played by Andrea Fay Friedman) is pregnant after being raped by her boyfriend (played by James Badge Dale). Detectives Benson and Stabler have to make sure it's not just her mother being overprotective and in denial of her daughter's sex life. They learn even more people could have used her innocence about sex to abuse her. ADA Cabot then has to interfere and take on her superior, in order to settle the mother-daughter dispute on whether the daughter should have an abortion or not.


It was a pretty decent episode. There was, of course, a twist or two, which kept things interesting. I liked how they handled things, overall. I don't recall cringing once at the dialogue and it felt like the show had done its research. It wasn't sloppily thrown together.

The subject matter was another story. I did cringe a little. I mean, when the topic came up recently of "Would you take it away?" I dangled some things out there, pretty unsupported and possibly unclear I might add, about what I even allow myself to think about when it comes to Playette's future.

Here's what I wrote:

"And we're not even getting into the future. I have done myself the favor of not thinking about that too much. (So, yeah, I do think about it a little.) School. Bad touches. Stranger Danger. Real friendships. The effects of constantly moving around as a military family..."

Bad touches. Stranger Danger.

Yeah, this show touched on that. Apparently, this girl's mom did her a huge disservice by not being up front with her about her body and sex in general. So much so that she was manipulated into thinking that sex was exercise and ended up pregnant.

So there's that. And then there was the follow-up part about whether or not this young woman was even competent enough to care for a baby.

To get back to what I was trying to say last week, I know that all kids are susceptible to being taken advantage of. That wasn't my point. My point was kinda more like "most 22-year-olds do not have that same problem." I fear for Playette not being able to tell the difference between right and wrong, no matter how much we teach her at home. I wonder if her general good nature can come with boundaries.

She is the absolute sweetest little girl right now. How/when do we stop her from being comfortable with just about anyone? Her social skills are amazing. She's a joy to watch with other kids and adults just love her. She is not your typical toddler. Not so much with the screaming or the tantrums or the separation anxiety. Sure, it happens, but she's pretty easy going a lot of the time.

How do we change that?

Do
we change that?

How do we instill in her that everyone is not worthy of her hugs, while also providing her with the strength and resolve to say "no" and the ability to express herself in a way that gets people that love her to understand that she needs help?

I don't know yet.

We're not there.

So while we wait for that time to come, we'll enjoy our little girl's hugs and sloppy kisses and be glad that she enjoys other people so much.

The show got me thinking is all.

Friday, March 27, 2009

Educating Peter

Wow. So I watched this on Sunday and...wow.

First off, I was blown away. It was like someone had gone into my head, took note of a lot of the fears I first had when Playette was born, and put them in a documentary with the express intent of both scaring the crap out of me and perpetuating the existing misconceptions and stereotypes about people with Ds.

In the past, I've read comments about Educating Peter (seen in full, but low quality here), but all I really remembered was, "At least it's better than Graduating Peter." So, yeah, I went in a little naive.

Jen reminded me of her post on this very topic from last summer. I remember reading that, but it's only now, after seeing EP, that it all makes so much more sense. I can understand more how she must have felt while watching in a room full of other people who do not have a child with Ds.

And then to have them laugh.

Laugh?!

I could barely close my mouth as I watched Peter grab the heads of other students and bang them together. As he writhed on the floor during lessons. As he mumbled unintelligibly. And otherwise attacked his classmates. I even noticed how it seemed like he wore the same shirt in almost every scene. I know that shouldn't matter so much, but it just bothered me. I was probably in over-sensitive mode, but still.

So, when I think about the people in Jen's class that day...people whom one would assume actually desire to become part of the support structure for children in special education...it hurts my heart.

And I know it hurt hers too. If you still haven't read her post, please do reconsider.

Ok, let me back up. I am so far ahead of myself. You may be wondering what I'm even talking about and I'm letting my emotions take me in 50 different directions.

In 1992, a boy named Peter was followed through his third grade year. He was in a full inclusion setting in his elementary school, located in Blacksburg, VA.

[Full inclusion is the term that I personally prefer over "mainstream" which essentially means that a student is placed with their peers and not separated out into another classroom that only includes children with disabilities. It's not for everyone, but it is a goal that I have for Playette. I want her to have that opportunity. If it doesn't end up being the best fit for her, so be it. We'll go another route.]

The film shows Peter, his classmates and his teacher struggling with the challenges posed by his having Ds. It ends with both students and teacher testifying to their own growth as a result of Peter's inclusion in their class.

The film ended up winning the Academy Award for best documentary short subject.

Now that that's out of the way...

It seems like a nice story, eh? Happy ending and such?

My recommendation to any parent new to caring for a child with Ds would be to avoid at all costs info that is more than 10 years old. EP fits this category.

It's not what I've seen to be true. Peter had issues that were more than simply what having an extra chromosome brings. It was as if he were never disciplined or socialized or any number of things that I can't pinpoint accurately because I've never been trained in counseling or education or anything close to it. I'm a parent of a nearly two year old daughter. That's my experience.

I wish there was an alternative to EP that played every so often on HBO or wherever more people are inclined to watch. It pains me to think that this is what people see when they're channel surfing. Because it's award-winning, I can see why it's stuck around, but it's not for me. My curiosity is satiated.

I wish I could say that I won't watch Graduating Peter, but I know myself and how I roll. I probably will end up even more appalled, but...I don't know. I probably just can't leave it well enough alone. It's already sitting on the TiVo waiting. We'll see.

Wednesday, March 25, 2009

NDSC Convention - Who's in?

The 37th National Down Syndrome Convention is being held this year from July 31-August 2 in Sacramento, California.

Click here for the brochure.

Registration just opened recently and I plan to take care of that very soon. At the very latest, I'll be sure to get in before the prices increase on June 22.

If you're not already a member of the NDSC, the cost of the General Convention includes an one-year membership.

I've never been to one of these events before, but I continue to hear good things. Since we're not too, too long of a drive from where it's being held, I think it's totally doable for us this year. The idea of learning from people like Dr. William Mobley, Patricia C. Winders, Joan Guthrie Medlen, Sue Buckley, Dr. George Capone, Sara Rosenfeld-Johnson, Kathryn Lynard Soper, and more? Wow. I mean, those are names from books and articles and web sites that I devour. It's exciting to me to think of what more I could garner from being in the same room with them.

Even better, I look forward to being inspired by other parents - ones who may very well be more proactive than I am. Maybe they have plans or ideas or something that can help me see that it's not magic, it's just a little each day that makes a difference and this is how I can fit it in to my chaotic life. I know I'm not alone in thinking that what I do is not enough. I am busy and disorganized and unmotivated at times. Not the ideal cocktail for the parent of a child that needs more than what is typically required, I think. So, yeah, I feel inadequate and also worry about how what I lack will impact my daughter in the future. If I can go to the conference and even just come away with the belief that what I'm doing is fine - dare I say enough even - than I'll take it.

If you've been in the past, I'd love to hear your thoughts/experiences.

Also, I'm curious about the Memory Book...anyone care to enlighten me?

Monday, March 23, 2009

Inclusion Part I...and some other stuff

It comes in all forms. And I love it.

I read this article this morning and thought enough of it to share.

On a related note, the TiVo WishList experiment is really going well. Since I embarrassingly admit that I love both TV and learning more about all things Ds, it's a perfect match.

So, over the weekend, I watched Educating Peter (Whoa. I don't know if I was ready for that.) and an episode of Law and Order: SVU. Last week, BD and I watched the episode of Birth Day that I mentioned a while back.

I'll share my thoughts on all of those this week. Stay tuned.

Heh.

Donation Confirmation



I'm hoping this means that they were able to use it. Yay!

This card is a lot more fancy than my last one. I'll see if I can find it in one of my piles of papers, photos, and assorted crap for a comparison. I know for sure it wasn't all glossy and personalized. Nice touch. I like!

If you're considering your own donation, please check the site for more info. And please let me know if you do!

Saturday, March 21, 2009

Celebrating a 'Lil Something Extra


Why today?

Well...

People without Ds have 46 chromosomes.

People with Ds have 47, the extra being a third copy of the 21st chromosome.

The most common form of the condition is therefore known as Trisomy 21, though many more people call it "Down syndrome" after John Langdon Down who first described the characteristics in 1866.

Today is March 21 or 3-21. What better day to claim to celebrate and help clear up common misconceptions associated with T21/Ds?

So, if you can, celebrate someone with Ds today. If that someone is in your house, give them an extra hug from me.

If you can't, know that clicking on either of those links is doing something. By you reading here and increasing your knowledge of Ds/T21, you are helping to smash the stereotypes even if you don't realize it.

Each One, Reach One, Teach One.

We thank you.

And here's another 'lil something extra from the days before I started this blog, just because:

12 days old


5 months old


10 months old


I know it's not all about "bowling" but still...

Meet the top bowler in the Special Olympics, Kolan McConiughey. He has bowled a perfect game several times.

Video replaced with a link to the same


Friday, March 20, 2009

Groan. Ack. Why?

After yesterday's dialogue, I was feeling really good about how so many of us could present different perspectives on a topic in which we have a huge vested interest and still be able to come together for the greater good of supporting our children. I was thinking that the world may be no match for the force of the Ds community. We've got a lot of power. Together we could educate the masses!

And then, POOF. Last night happened.

I am so disappointed with our President right now. I know he's human and I know that people make mistakes. But what settled with me last night as I read articles, watched clips of Leno's show, and digested reactions found all over the Internet is that sometimes even intelligent, well-liked, powerful people still inherently believe that it's ok to "mock themselves" at the expense of those that are developmentally disabled.

Special Olympics' Response

Related article

Another Article

What President Obama said last night is not unlike using the "r word." Likening his bowling to that of a Special Olympics athlete may be good for a giggle for most people, but think about it. He's not just making fun of himself. He's making fun of Special Olympics athletes. Assuming that they're somehow less-than and that being unskilled at something makes him like them. And that's a cheap shot. It's an easy joke to make.

Unfortunately, it's one that most people are ok with. Because really, who's complaining? Just us folks with a huge vested interest in making this world a more tolerant place so that we don't have to wonder about taking away the characteristics our kids were born with simply so that they won't suffer from unwarranted discrimination.

I think President Obama is a great guy from what I know of him. I don't think he's evil. Just like I don't think that all people who use the "r word" are evil.

In the interest of educating, I'm sharing this letter (italicized below). It was written by a member of my local Ds list-serve and it was offered up as a template for those of us who felt inclined to let the White House know that we are not ok with what was said last night.

Click Here to Contact the White House

Feel free to cut and paste as you like. The more people who write, the better so that our voice will be heard.

Dear President Obama,

This is regarding your comment about Special Olympics on the Late Show with Jay Leno. I am asking that you make amends for that unfortunate comment with your actions -- by increasing the funding for Down syndrome research.

Due to recent breakthroughs in genetics and Down syndrome research at facilities such as Stanford University, a treatment appears imminent. If individuals with Down syndrome can live more independent lives, the government could save much of the 6 billion dollars spent annually for people with Down syndrome, and these people could become tax-paying citizens. The long-term benefit to our society is huge. The initial, up-front cost of the research could, in the end, save taxpayer dollars.

For the majority of people with Down syndrome, a mere 10-20% improvement in cognition could mean that they would live independent lives and support themselves financially. This research could also help people with other developmental disabilities.

People with Down syndrome are living longer lives, many into their 70s, but nearly all will develop Alzheimer like symptoms by the time they are in their 40s. A link has been made between a gene associated with Down syndrome cognitive issues and the cognitive issues associated with Alzheimer?s disease. The research being developed for Down syndrome has the potential to delay the onset of Alzheimer?s, not only in people with Down syndrome, but in the general population as well.

I think Dr. Mobley, a Stanford research, said it best when he said, "During times of tight budgets, it may be tempting to de-emphasize research. And yet, research - particularly medical research - is the best investment we can make in health care for our country. If we are concerned about cutting future health care costs, we must look for ways to prevent those costs from occurring."

Thank you for your time. I know how valuable it is.


===

And some more good info posted by a member of that same list-serve that helps to put it all in perspective:

To those of you who will respond -- it is also interesting to note decreased DS research funding by the NIH:

"Federal funding for DS research from the NIH has decreased over the past decade and is currently at $42 per capita. It is significantly underfunded compared to other conditions on a per capita basis:

Cystic Fibrosis: $3000 per capita or 71 times DS funding per capita

Huntington's: $1700 per capita or 40 times DS

Fragile X: $1529 per capita or 36 times DS

ALS: $1433 per capita or 34 times DS

Multiple Sclerosis: $422 per capita or 10 times DS

Parkinson's: $101 per capita or 2.5 times DS


===

I wholeheartedly agree with those that state that this is a teachable moment that we can't let pass us by. Let this be an opportunity to share with the masses the truth about those with developmental disabilities and dispel the stereotypes. President Obama is very popular. A lot of people adore him. Shoot, there were inaugural balls in my small town over 3000 miles away from DC! Imagine the possible impact if he were to make a statement, take some action, share his own enlightenment.

At a minimum, I want to see a Special Olympics Athlete whoop up on BO in a highly competitive bowling match.

Finally

It may have taken me 8 months, but I'm making a big, scary, hairy move.

Resignation submitted.

It's not a raise, but it's a new environment, which I need desperately. Plus, I'll probably be doing more of what someone in my pay grade does and not making half of what others who do the same as I do make.

And I'm moving to an environment that supports alternate work schedules. One step closer to getting Wednesday mornings off to spend with my girl. Back to Parents' Place we go! OT at home! Yay!

My (soon-to-be-former) boss is not here and has not spoken to me since I requested a performance review from her 2 weeks ago. Unfortunately, I didn't get to tell her of my transfer in person or by phone since she didn't respond to my request to do so. As a professional, I find that unfortunate, but as a woman who's looking forward to new opportunities? So be it.

Last day: April 10th

I Hope...

I hope that you all know how much I appreciate your kind words and comments. Your support is appreciated more than you know.

I hope that you understand that me wishing the impossible wish that my daughter didn't have Ds doesn't mean I don't adore her as she is. I am a very logical person. I don't obsess about this topic, but when I feel it, I allow myself the luxury of feeling it all the way through. And then? I get over it. Until next time. And yes, I agree that those days are much fewer and farther between as time passes.

I hope that you stick around and see for yourself that I am very proud of her. Playette rocks. Trust me on that. I enjoy her immensely.

I hope that one day I can be a good enough writer so that I can convey my thoughts clearly and succinctly and not be misunderstood. That's a gift that I'm not sure I have yet, but I'll continue to work on it.

I hope that the world listens to us and accepts our kids for who they are, without limits and labels. In the midst of all of our words is that desire. We want the best for our kids, regardless of the number of chromosomes they possess.

I think that's something on which we all can agree.

Thursday, March 19, 2009

If I Could

Ok, so I'm already tearing up.

Lisa's last post struck a chord. And then I read Wendy's response.

I know how I feel, and I'm sure about it, but then I feel bad. Guilty, really. What is it that's not allowing me to let this go? I mean, I completely understand it from the mamas earlier in their journey. Just thinking about the first year brings back a whirlwind of emotions. But I'm supposed to be in that happy place now, right?

Crap.

Like Lisa, I've heard over and over and over again from other parents that they wouldn't take away Ds from their child if that were even possible. I've always responded with an incredulous "Really?!"

Because I would.

If I could.

I know it's a pipe dream and it's not something I focus on or pray for or really even think will ever happen. Ever. But I do visualize sometimes. I wonder what Playette would be like without Ds. In my mind, she's still the wonderful, fun, beautiful little girl we've come to know and love, but she walks. And talks. And her tongue doesn't protrude. And we have no therapy. And...well, she does the same things her typically developing peers do and she's so "normal" that she doesn't warrant a second glance for anything more that simply being a cute toddler.

People wouldn't ask how old she is and then get a confused look on their face after being told the whole truth.

And maybe I would tell them her age in months (even though I said I never would when I was childless) instead of years. I know saying "1" is a lie simply because I'm omitting the details that they're really after. I'm knowingly letting them think that she's closer to 12 months than 24 so that I don't have to deal with what comes next.

There would be no IFSPs.

There would be no trying to educate my family, friends, and co-workers about all things "special needs" and then opening myself up to ridicule and possible alienation.

I know there are good things that have come from being ushered into the Ds community. There are all of you that are a part of that community with me. The people that read about my life just as I read about yours on a regular basis.

There's an openness and a freedom that I didn't have before.

I probably wouldn't be so friendly with Arthur, the 30-something year old man who works for Hope Services at both my job and Playette's daycare. I seek him out. Ask him about his day. His life. And I really care about the response.

I'm real enough with myself not to think that I would have just up and decided one day to change my ways if not for Playette's diagnosis being a factor.

Yes, the blinders have been removed.

I notice instead of pretending that I don't.

But, I swear.

Today.

If I didn't have to think about Playette's peers climbing around playgrounds and building the muscles in their chubby little legs that they've been walking on for a year or more already? I wouldn't.

I realize that time does heal though. Last year this time, I would have broke into tears or at least had some sort of anxious moment when Playette's daycare director made such a big deal about her taking 12 steps 3 times today in front of another family whose son is almost exactly her age. (Back then, I was all about no one knowing that didn't need to know. I've never addressed her diagnosis with them, but if they haven't caught on in the last year +, then I'm 100% shocked, especially since the dad is a doctor.)

I read the other day about another of Playette's peers who has mastered jumping with two feet and I was all, "Wow," and then, "I've heard jumping is going to be difficult for my kid."

Jumping.

And we're not even getting into the future. I have done myself the favor of not thinking about that too much. (So, yeah, I do think about it a little.) School. Bad touches. Stranger Danger. Real friendships. The effects of constantly moving around as a military family...

So maybe tomorrow/next month/next year I won't feel this way.

Who knows.

And if you've made it this far and still wonder why I teared up tonight, and feel like being a little mushy yourself, check out the lyrics.

Because I would.

If I could.

Tuesday, March 17, 2009

Tap Tap Tap, Rub Rub Rub

So this morning Playette is all ready to go to daycare (thanks, SuperBD!) and I'm just getting up to get ready for work. Usually, after she's dressed, we trade off. I do her hair in our bedroom and let her watch a little TV while I work. It's not ideal, I know, but I've written before about the hairdo stress we go through so, yeah, bribery works.

Anyway, so this morning, when she gets in the room with me, her hair is already done (thanks again, SuperBD!) . But she still wants the TV on.

How do I know this?

Well, she goes...Tap Tap Tap, Rub Rub Rub.

Tap Tap Tap on the TV.

Rub Rub Rub on her chest.

I love this communication thing!

I really do get stressed out about this and I know some of my other mama-readers do too. The words Playette did seem to have are gone or at least buried beneath her current interests. (Remember "bear chair"?...hmph)

But then over the weekend, I got confirmation that she understood "cracker." She asked for a graham cracker after refusing her lunch (wassup with not wanting broccoli anymore anyway?) by taking her left first and "knocking" on her right forearm. Huzzah!

And then today? Tap Tap Tap, Rub Rub Rub.

Which tells me that she likes TV, she actually has been paying attention to it, and she understands the correct way to use the word "please" without me instructing her to do so first.

Now I have a few questions:

If you have a child in Speech Therapy, what do you expect to get out of the sessions? Right now, we go for 30 minutes per week (it's insanely expensive and we're paying out of pocket).

Do you personally think that a one-hour session every two weeks would be better?

I'm a little confused and I'm wondering if we're just throwing money away. I know that ST is more than just talking. We have issues with swallowing and communicating in general. But I must admit that talking is a biggie. And we don't really have that. Is seeing a ST for 30 minutes a week going to get her there? Or is it more important that we read and speak with Playette and just consult with an ST as needed?

I guess what I really want to know is whether or not we'd be doing her a disservice at this age if we cut out an appointment or two a month and just spent that time at home, dedicated to reading, signing, etc?

I think the more I write, the more I think I know.

I'd still love to hear from you all though.

Monday, March 16, 2009

Our Girl

Itsy Bitsy Spider.



Trying to work the barrettes free.





Victory! Enjoying a tasty barrette.




* These were all edited in just a few minutes on this site. My first time there and I didn't even have to sign up.

Sunday, March 15, 2009

Checking Out the New Digs

Playette decided to try on Mama's new toy for size.



Approved!



Saturday, March 14, 2009

Alter Egos

I came home from the gym this morning to this scene:

Allow me to introduce....

The Dust Avenger
featuring his trusted sidekick
Bunny Buster







Friday, March 13, 2009

Will Work for Snacks

Or should that be "Will Walk for Snacks"?(!!!)

I knew she could do it. Apparently, she just needed the right motivation. Now, if she were 100% me, I would have known what to break out. But, alas, these are her drug of choice. Surprise, surprise.

BD came home from the session with FNPT today and he had a surprise. Take a look:

video


I had to debate with myself over whether or not to post this since you get a very unattractive view of my tramp stamp back-fat. But it's all about the kid here. I'm taking one for the team.

And here's the follow-up.

video


By this time, she was so, so tired. She performed for an hour of PT and then put on a show for me before we even got the idea to film it. And then BD couldn't help get her started because his hands were full with the camera.

But regardless, she took steps. Many, many steps. I saw them with my own eyes. She stood there, went after the cereal in my palm, grabbed it, and ate it.

She knows what she wants and she's going to get it.

Baby Steps.

Love!

Wednesday, March 11, 2009

A Promise

I'm thinking of Avery and his family today. Please feel free to join me.


The surgeons are working to keep this active boy's heart strong.

Getting Our Money's Worth





Tuesday, March 10, 2009

Page 96

I'm reading Jewel now.

Here's a description:
The year is 1943 and life is good for Jewel Hilburn, her husband, Leston, and their five children. Although there's a war on, the Mississippi economy is booming, providing plenty of business for the hardworking family. And even the news that eldest son James has enlisted is mitigated by the fact that Jewel, now pushing 40, is pregnant with one last child. Her joy is slightly clouded, however, when her childhood friend Cathedral arrives at the door with a troubling prophecy: "I say unto you that the baby you be carrying be yo' hardship, be yo' test in this world. This be my prophesying unto you, Miss Jewel."

When the child is finally born, it seems that Cathedral's prediction was empty: the baby appears normal in every way. As the months go by, however, Jewel becomes increasingly afraid that something is wrong with little Brenda Kay--she doesn't cry, she doesn't roll over, she's hardly ever awake. Eventually husband and wife take the baby to the doctor and are informed that she is a "Mongolian Idiot," not expected to live past the age of 2. Jewel angrily rebuffs the doctor's suggestion that they institutionalize Brenda Kay. Instead the Hilburns shoulder the burdens--and discover the unexpected joys--of living with a Down's syndrome child child with Down syndrome.
It's on page 96 that the diagnosis is made. It's a good book so far. I was warned about the language used beforehand, which helped. Of course 1943 in Mississippi is not exactly known as the most tolerant time in our history.

Already, I'm seeing how fortunate we are to have had Playette when we did. I couldn't imagine what it would have been like for us back then. I'm looking forward to seeing how Jewel and her family adjust.

I hurt for her when I read the doctor tell her that Brenda Kay was "physically and mentally retarded" and that "she will never progress more than this, than what she is right now."

Wow.

She was 5 months old.

I mean, when you hear that, what inspires you to even try?

All we know to do is try. In our world, we try to see no limits. BD is at Speech Therapy with Playette at this very moment.

Back then, trying was the exception and institutionalization was the rule.

...
...
...

If someone is interested in reading Choosing Naia, I'd be glad to send it to you as Lisa did to me. If you can pass it on to someone else when you're done, that would be even better.

Next on my Ds-related want-to-read list is Expecting Adam. And then maybe The Memory Keeper's Daughter. I've seen the movie (meh), but I usually like books better so I'll give it a try.

Poor Strange Son. It's like I'm never going to finish that book.

Monday, March 9, 2009

Crying, Writhing, Leg Locks, Frustration, Crawling Away, Begging, Dragon Tales, Caillou, etc.

The above things actually did not happen in our house this morning. For once.

Usually they do. And they're all associated with this little girl getting her hair combed.

Over the weekend, I told BD that I thought a hairdresser's chair might work.

And then I amended it to "a hairdresser's chair with tie-down straps."

It's always such a struggle to get this little girl "presentable-by-the-head" for the outside world.

So, we're at BRU yesterday and we see this.

Hmmmm...

We had a coupon, so we bought it.

And so far? It has worked.

Playette played happily (with some adhesive tape - courtesy of her dad) this morning while I did her hair.


Final Product




What a Girl Wants

First some random coolness:

I totally caught Playette doing some hand motions to Eensy Weensy Itsy Bitsy Spider today. Yay!

Another biggie (to me and literally) is the gift BD brought home for me a few days ago. Back when we were in LA in January, I sat in the most comfortable humongous bean bag chair and fell in love.

I must say that I am not a shopper. I'm not much of a want-er, period. I get what I need, sprinkled with some goodies (mostly of the vacation variety) here and there and that's it. So when I say I like something, that's a pretty big deal. I've been trying to explain that to BD and I thought he was just wishing I'd stop talking already, but he proved me wrong. Big time. He heard me.

That? Is romance.

I like flowers, sure, but they're not necessary. And I don't celebrate many holidays. Chocolates are wasted on me unless they're all exactly what I like and then I really only want one or two unless we're talking cupcakes and then all bets are off.

But surprise me with something I really want and I'm golden. Like a spatula or a stainless steel bowl. Or filing my papers. Or any other little thing.

I'd rather have small and meaningful over flashy and irrelevant any day.

This time, though, it was big.

Like, King Sized big.

And I love it.

Last night BD went out and had a great time. I went out too, but I was home by 9:30. Playette was asleep so I curled up in my new snugly-thang and read until I could no longer hold my eyes open.

Best. Night. Ever.

Gold star for BD.

Friday, March 6, 2009

Tooth Watch '09

We have a second tooth.

I repeat

We have a second tooth.

Playette is pissed.

Stay tuned for more details as the story unfolds.

Thursday, March 5, 2009

And the Bloggy Award goes to...

I’ve been honored with a few blog awards lately, which I happen to think is pretty cool. The first one I ever received was from Lisa and I totally dropped the ball on receiving that one properly. (Sorry, Lisa!) I’m still a newbie to the whole blogging culture, so please blame that on my ignorance and not my heart.

Here it is now for all to see:

These blogs are exceedingly charming. These kind bloggers aim to find and be friends. They are not interested in prizes or self-aggrandizement. Our hope is that when the ribbons of these prizes are cut, even more friendships are propagated.

Sweet, huh? BD just said "shame on you" to me for slacking. Shame on me, indeed.

I’m glad that people tolerate enjoy reading what I write. Having this space has been very therapeutic for me and if it helps others along the way with some info or a smile? That’s even better.

Courtesy of the two lovely Lisas: Lisa at Bridget’s Light and Lisa at Finnian's Journey. Since I received these at right around the same time, I'm answering them both now. Some of the questions differ, but most are the same.

Premios Dardos means “prize darts” in Italian. This award acknowledges the values that every blogger shows in his or her effort to transmit cultural, ethical, literary, and personal values every day.

And in the spirit of passing along the love, here's how it works:

Step 1: respond and rework -- answer the questions on your own blog, replace one question that you dislike with a question of your own invention.

Step 2: tag some other bloggers to do the same, remembering to contact each of them to let them know they have been selected for this award.

1) What is your favorite thing to wear?


Anything comfortable, but mostly sweats, t-shirts, and tennis shoes. I really wish I were more girly.

2) What is your biggest fear?

Tsunamis or raccoons? (Oh! I saw one last night when I was leaving work and I almost lost it. I made my co-worker stop talking to me outside and get in my car so that I could drive him 10 feet to his own car. That thing looked vicious.)

Ok, so raccoons then.

3) Do you nap a lot?

I want to nap a lot.

4) *My New Question* If you could have one thing in your house magically fixed, what would it be?

I'd get one of those TV organizers to come over and get all my crap together and make it simple for me to do for myself from then on out.

5) What websites do you visit when you go online?

Blogs, Facebook, and Hotmail mostly

6) What was the last item you bought?


We bought a new car seat for Playette last night. Saved $100! WOOHOO!

7) If you could go anywhere in the world, where would you go?

One day

One day hopefully a little sooner than that

I love how both BL Lisa (who gave me the award) and Cheri at Raising Reid (who gave it to her) both mentioned my ‘hood in this answer.

8) If you could go to the Oscars, who would you want to sit next to?

Someone fun, I guess. I’d be too excited about the parties to care.

9) Has a celebrity's hair cut ever influenced your own hairstyle?

I had the Halle Berry 90s cut.

Remember?

10) What is your most embarrassing moment?

I do random stuff all the time so it’s hard to pick one. BD just reminded me of something…

How about when his mom gave me a bag full of sexy lingerie in front of a room full of people right before we got married? I am such a prude so I think I wanted to melt right into the floor at that moment.

Not funny, I know, but trust me. I was embarrassed.

11) What was the last movie you watched?

Notorious

12) What is the luckiest thing that ever happened to you?

I am not what I consider a lucky person. I’ve won a couple of radio contests.

13) If you had a whole day to yourself with no work, commitments or interruptions what would you do?

Sleep in, watch TV, probably a whole lot of nothing.

I’d like to think that I’d file all of the paperwork sitting in a pile on my desk, but what’s the use of lying in a meme?

14) Is there a major goal you have that you haven't yet achieved?

Becoming fluent in a foreign language

15) Drinks are on the house!! What do you order?

Mojito or a Lemon Drop…wait, someone else is paying? Maybe something bigger and stronger.

16) If you were in a terrible accident and your doctors told you they could save either your hearing or your sight (but not both), which would you choose and why?

I would choose sight. I have a new found fondness for sign language and know that I could communicate just fine that way if need be.

17) What is something that those in blogland might not know about you?

I know some people read that know just about all there is to know about me, so that’s a hard one. Hm… Well, I’m a big scaredy cat. I have to run upstairs at night if BD leaves me down here alone. I get to bed all out of breath like someone’s been chasing me.

18) What do you regret?

I always regret not saying how I feel when I'm "in the moment" and then thinking up fifty-eleven things I could have said after the fact. Blogging helps in that area.

Which is a great segue to the next question...

19) Why do you blog?

Several reasons

20) What do you feel is your worst character flaw?

I'm too sensitive.


=====

This one came to me courtesy of Sonia at A Hapa Girl and her Hapa Family.

The rules of the award state that I must list seven things I love, and then pass the award onto seven bloggers I love to read.







Seven things I love:

1. All things Playette
2. Enjoying common interests with BD
3. Vacations
4. Spending time with friends
5. Sleeping
6. Laughing
7. Learning

=====

And now for the tagging:

I love reading lots and lots of blogs. I'll pick 3 here (which is very hard for me to do) and tell you why I think they're worth reading. The authors of the blogs I choose can feel free to respond with as little or as much as they want. No rules.

Proximidade - Living in Invisible Cities

I've mentioned here before how much I admire this blog. "Willa's Mom" is raw, honest, and engaging to read. She draws me in every time.

Since that post, I've heard from several people that they also felt the same way after reading. That's a pretty powerful thing to be able to do with your words.

Premios Dardos - Where Are My Angels

From tears to laughter.

Every time I read this blog, I crack up. One time I was sitting with BD at Denny's and I just couldn't put my Blackberry down until I finished reading about the author's Wii struggles. I love reading about her day-to-day adventures with three beautiful daughters and a "Child Husband."

Just having a Child Husband alone should be award worthy.

Kreative Blogger - The Zoromski Chronicles

The author's littlest daughter is just about a month older than Playette. I love seeing her photos and thinking, "Not too long from now, we'll be dealing with that!" It's even more exciting now that Ruby's walking. The whole family just looks like a lot of fun to be around.

=====

You know the hardest thing about blogging? It's not the time it takes. It's that you learn so much about people, develop relationships based on commonalities, and then you live nowhere near one another so you can't even hang out. Geesh! I wish everyone listed in my reader could come chill at my house for a day.

Wait.

That's a lot of people.

And then I'd have to clean up.

But you know what I mean.

I love you guys.

Thanks for listening.

My heart is full.

Wednesday, March 4, 2009

For my military peeps...

When we were still living in the DC area after Playette was born (President's Hospital, represent!*), I did a lot of research about available services and programs. It was at that time that I first heard the word "respite." We're fortunate here in CA that we can access great child care via the Regional Centers, but in DC? As great as everything else was? Not so much with the respite.

I read one day that the military was offering up to 40 hours per month, but when I called to follow up, I learned that it was Army and Marine Corps only. It was odd to me that we couldn't join in because usually, especially in DC, what is available to one service is available to all.

I was happy to find out today that the Navy has stepped up their game in this department.

Maybe one day, we'll be able to take advantage of this wonderful benefit. I'm sure it will be especially helpful when BD is deployed in a couple of years.

If you know of anyone eligible, please do share this info with them.


*Something to note:

When I was pregnant, I was really looking forward to getting Playette's newborn photo taken. When we toured the hospital, it was mentioned that we'd have the option of receiving these pictures for free and the novelty of having something different and free than the typical newborn pic, I thought was kinda cool.

But then she was born and Ds entered our lives. I never went to get the photos taken before she was discharged.

It's making me sad just to think about it. I've honestly never revisited this before just now.

Anyway, so because she wasn't gaining weight and I was struggling with breastfeeding my sleepy baby, I made many trips to see the lactation consultant. She was great. Besides giving us as much time and materials as we could ever ask for, she had an adult daughter that had cognitive delays and, as a result, this woman was the most understanding, compassionate person I could have asked for during that time.

One day, while at the hospital for an appointment, I decided that it was time to take the photos. I think Playette was close to two weeks old by then. As you can see, she had on baggy unisex pajamas, not a cute little outfit. I hadn't even started putting bows in her hair yet.

So, anyway, that's the story behind that photo.

We've come such a long way since then.


Monday, March 2, 2009

You People

I came across this video the other day thanks to Jennifer.

And then I did some research to see what it was all about.

I was planning a post around this info, but it sat untyped as a draft all weekend.

Then I read this article that Tricia shared on her blog.

I read the comments too.

(Tip: You can get really good info from reading comments.)

All of that together sat all lumped up in my brain today as I tried to figure out what it all meant to me and how I could most clearly convey that to others that may be reading here.

So here's the deal.

"You people..."

Yup. That's it. It pretty much sums up how I feel.

And I know that doesn't make a whole lot of sense so I'll attempt to explain my train of thought.

1. A lot of doctors just don't get it.
2. People with Ds are people first.
3. All people don't look alike.
4. "You people..."

Any minority can tell you that the phrase "you people" just doesn't sit well. No matter what. Even when someone says, "You people sure do know how to dance/save money/hug," your heart sinks. This person has just put you in a category. You've been labeled. You're no longer an individual.

Well, that's what I feel when people (especially those in the medical profession) use phrases like, "S/He must have a mild case of Down's" or "You can barely even tell s/he has Ds" or, my new personal fave that I read on a blog over the weekend, "S/he doesn't look very Downsy." shoot me now

Ok, look, chances are that I'm preaching to the converted. If you're reading here, you're on this journey with us in one way or another. But for those that aren't? Let's continue.

I can't speak for anyone else, but this bothers me.

I don't feel honored, or special.

I don't think that means Playette is any better than her chromosomally enhanced counterparts.

In fact, guess what? Most people who make comments like that

- wait for it -

HAVE NEVER SEEN A BABY WITH DOWN SYNDROME BEFORE.

*exhale*

I don't use all caps lightly, so trust me that I'm serious on this.

Babies with Ds, children with Ds, adults with Ds...look like themselves.

When people tell me I don't look Black, I get offended. I straighten them out. Making it seem like I'm somehow "better" for having light brown skin or curly hair reveals to me a certain lack of enlightenment and I'll let you know.

So why wouldn't I do the same regarding my daughter?

Anyway, back to the all caps part.

If you click on the "i have a voice" links above, you'll see pics of people with Ds. And you may notice that they don't all look alike. Or maybe even what you thought they should look like.

Assuming they do is ignorant.

And I don't mean to say that in a mean way. I mean that in a "maybe you just didn't know and need to be informed" way.

I read a lot about Ds. I've immersed myself in the Ds community. And I can't tell you how many times I've heard that a baby doesn't look like they have Ds.

And I've always wondered, "If none of our kids look like they have Ds, then what does a kid with Ds look like?"

[/rant]