Monday, October 6, 2008

seven things meme

I've been tagged by Holly's mom over at Holly Daze. Her little baby is the first one to receive minocycline (a common antibiotic) as a potential treatment for Fragile X. You can read more about it here or here. Super exciting stuff.

For this tag, I am supposed to say 7 interesting/unknown things about me. I'm being a little more than lenient with my responses. And I have 9. Oops.

1. My favorite episode of Spongebob Squarepants is on right now. We usually don't watch it, but I was in the mood. Anyway, this jerk comes into the Krusty Krab and accuses Spongebob of forgetting to put a pickle on his Crabby Patty. This unsettling news rattles Spongebob to an even deeper level of stupidity; it renders him completely unable to assemble a Crabby Patty correctly. He stands at the counter repeating the steps in the wrong order, "Ketchup, bun, tomato, burger, bun, mustard, lettuce...." It continues at home, where he can't remember how to tuck himself in at night, "Sheet, Spongebob, mattress, blanket." Eventually he regains his confidence and Bikini Bottom returns to normal.

2. Punkin's notebook read, "The pictures in his bag should adequately describe your son's activities during rest time." The photos are him, on his upside-down cot, sporting only a pull-up. It's a good thing his teacher has a sense of humor. =)

3. I have to get a cat scan of my sinuses on Thursday. This is something that probably should have been done years ago, but I am afraid of three simple words, "You need surgery."

4. Sometimes the idea of having a cure for Fragile X scares me. I know, crazy, right? It's not so much a concern for babies and toddlers, but for older patients. I blame it on Flowers for Algernon. I mean, imagine a teenager or even an elementary student who has always known life a certain way and then just slowly flipping a switch. It's not as if that individual would lose their memory. I just can't imagine shifting my perspective -- and other people's perspective of me --along with my general understanding and abilities changing so dramatically. Plus, I love Punkin and all of his crazy quirks. I can't imagine him any other way. At the same time, however, I have to understand that he is 3 right now. When he's 13 or 23 I may feel much differently as I watch how his life and circumstances differ so greatly from his peers. Right now his quirks are funny. His aggression can be contained or even ignored to a certain degree. And sometimes when the (private Lutheran) school kids sing in church on Sunday I want to just cry and cry and cry because I want so badly for him to be up there some day. And maybe he will be as a Sunday school student. I am so appreciative of my Lutheran education; I wish I could share that entire experience with him. So right now my priority is awareness so that more people are correctly diagnosed and more babies are tested at birth so that they can receive early intervention services (and maybe that cure).

5. I remember my first anxiety attack at around age 7. I share this only to make people aware that depression and anxiety occur at all ages and for all variety of reasons. I had a ridiculously beautiful childhood; my issues are chemical, not environmental. This, of course, makes me even more anxious as I watch my son, who is completely unable to express himself, and wonder what he thinks and feels as he struggles with Fragile X.

6. I believe in full inclusion in theory but often not in practice -- because it's done half-heartedly. It only works if every single professional in the school is on board and all of the appropriate supports for both staff and students are cemented in place. Inclusion doesn't just mean allowing Sally to go to some or all of her classes with all of her typical peers; it means adapting the entire curriculum, adapting the physical classroom, and giving her OT, PT, and speech resources that are built into every part of her day. And all of this should not be left to one teacher's shoulders. It should be a team of teachers working together, maybe even with (gasp) classroom aides, to support all of the students. Do you see this happening at your child's school? Cause I don't see it happening at mine. My sister taught in this type of environment, so it is possible. I know it's possible.

7. I was an extra in the movie The Babe. If you ever get an opportunity to do something like this, go for it. It was a fun educational experience. And hot. It was 90 degrees in a baseball stadium in the middle of Nowhere, Illinois.

8. I have a BA in English and History with a minor in Women's Studies. I guess that's why I'm working in a preschool, right? =)

9. I am not only voting for Obama, but I also donated to his campaign. My parents are weeping; my grandma is huddled in the corner clinging to a picture of Bill O'Reilly. I love that a family can have such big political differences and still love and respect each other. Even if they think I'm nuts. Last week one of my dad's co-workers gave me a little metaphor. He said that it's like this: You work hard in school, you get A's. You socialize, but you are responsible. Your roommate stays out late partying, skips class, and is flunking out. In an effort to save him, the college takes a little bit from you and all of the other A students and gives it to the failers, bringing them up to a C minus. This is what voting Democrat does, and it is terribly unfair to the A-listers. Okay, this would be unfair. The thing is, I also read something on Dooce (beware of her language) that caught my attention. She posed this question: Indulge me for a second and consider this scenario: let's say you're given the opportunity to donate some money to a desperate family who would use it to feed their children, but were only able to do so if you donated the same amount of money to someone you knew would use it to buy crack. Would you do it? I would. And I guess that makes me a Democrat. Because I understand that not everyone is like me -- not everyone who applies for and receives government help needs and deserves it because while they are educated and working it just isn't enough. But some people are like me; and those who abuse the system bring me down, too. I don't want to advocate for them, either. And in the case of college grades, let's be honest--the good acts of the studiers won't trickle down to help the D-listers. I guess the optimistic Democrat in me thinks we should figure out how to keep people off the D-list and give them stepping stones to get off of it when they end up there.

7 comments:

Jennie said...

I would do it too (the Dooce thing) because you're helping one person who really needs it.

SB said...

I like the way you worded that. And I have a great deal of respect for everyone's right to vote. I am glad that you're voting, period.

:)

Kristiem10 said...

I love that Spongebob episode, too. And, while I would personally give money to both a needy person and a crackhead, I don't necessarily think our government should. But, the great thing about this country is that we can all vote according to our concience and make our voice be heard. I am on the fence about the "cure" issue, too. Love ya.

Laura said...

The thing about the A-lister metaphor is that it's ignoring the many social and, yes, sometimes government-enforced factors that conspire to keep D-listers failing. Yes, some people abuse the system. Yes, some people just don't try. And yet there are also many people who try and try and are continually squashed down by the societal structures that have been in place for decades--and that in so many cases have been set up to benefit rich, white, men.

Anyway, not trying to be inflammatory; these are my observations and opinions and not the other lion's, necessarily :) I respect everyone's right to vote and I am impressed by anyone who takes the time to research the issues and vote honestly from their head and their heart.

d. said...

<3

Holly's Mom said...

So Happy to see 9 things about you! Very cool. My degree was also in English, and I ended up working in Educational Technollgy, I think its something about a general education preparing you for a professional job.

I was actually an extra in the matrix Movie. There is a Motorcycle care chase highway scene, and I am in the traffic driving my Camry. There were a few other scenes too. Being a movie extra was a lot of fun!

PS i identify with the political family comment, my parents listen to glenn beck all day and alas, we are liberal berkeley hippies who don't think socialism is a bad thing...

But I agree, I am glad everyone has the right to choose and vote and participate.

Sarah said...

Wow, I can totally relate to your concerns about "curing" your kid. Of course I don't want my little guy to suffer, but I want him to be able to be who he is, and I love him the way he is. But, as you noted, your little guy is three and mine is two, and I'm pretty sure some of the quirky things my kid does won't be too cute when he's a grown man.