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.

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.

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.

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?

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!