Heaven

Today, Beth and my parents and I were driving home from Fred Meyers when we started talking about my late grandma.

"She's in Heaven," Beth said.
"Yep!"
"I'm nervous to go." She points up.
"What's there to be nervous about?"
"I'm afraid of heights."


Too cute.

Judgement Day

I often find myself only wanting to write on here in negative situations, but refrain from doing so as thats not what I wanted this to be.

Today, though, I have a topic that's neither negative nor embarassing!

I'm sitting here at work and a father and his daughter are waiting in our waiting area. His daughter, I've noticed, is about three or four, very energetic, and has Downs! It's hard for me to not sit here and watch them the whole time, as little kids with Downs are the cutest things to me! Anyway, the girl's dad noticed my noticing and I could tell he's been on the defense before. I never feel comfortable saying, "Oh, you're daughter has Downs? So does my older sister!" because there is always that chance that the kid has genetically small features, or is just innately joyful. I never risk it =)

Well, due to this, I had an epiphany: How the people around me treat people with disabilities severely impacts my relationship with them, even if they don't know it. Most of the people in my life don't know about my sister, simply because I chose in high school to stop defining myself by my family in general. Because of this, people are less inhibited when interacting with people with disabilities around me, I've found. In first grade, my best friend knew my sister, but was terrifed of her. She did not associate with disabled kids, but would force herself to with my sister. In tenth grade my best friend knew and had a laugh with (not at) the kids in the Special Ed program, without knowing about my sister. There is a man with autism (asberger's, I think) that comes into my work every day, and it's so interesting seeing my coworkers interact with him. No one here knows about my sister's disability, and not everyone is nice to the guy. At all. Some people baby him, some people talk to him like he's a human being, and some people try their best to ignore him, even though he knows all of their names, and even when he's standing right in front of them. I'm not sure if it's a personality thing, but I'm pretty sure it's because of my sister that I judge people on such 'simple' terms.

Truth

I'm starting to wonder if it's actually hard being someone with 'special needs'. I'm not even thinking about the poor souls that are bedridden, or go through numerous bouts of cancer. I just mean the people with Downs Syndrome, Autism, etc. The rarely-fatal-but-life-altering issues.

I occasionally have quite serious talks with Beth about how she wants to be like me & our other sister. She's told me that she's 'all done' with being 'like this', and that she doesnt like being different. I automatically try to change the topic, or use the cheesy "We're all different!" lines, but I think she's starting to catch on. Still, what do you say? I'm sorry, there's nothing you can do? That's horrible. But, is it better to say that than to say nothing or to change the topic? She often brings up her desire to drive, go to prom, and go on dates. I try to deter here by listing the negatives, which usually works for a little while. A long term fix would be better, though.

I can't really imagine wanting to do so much but only being allowed to do so little due to reasons beyond your control. Beth watches Disney Channel, and went to public school, so she has a vague idea of what she's missing. She sees Sharaya and me come and go with our social lives, family, and jobs and she knows there are inescapable odds that she won't have half of it.

My altime favorite Shia LaBeouf movie is Tru Confessions. It was a Disney Channel Original Movie back in the early early 2000's. In it, Tru has a twin brother (Shia) with special needs. Whoever wrote it must have experienced this all first hand, and it's so real. My favorite scene captures a bit of what I'm talking about:

Small Talk

One night when my parents were on a date I decided to take Beth to her favorite restaurant - McDonalds - and a movie. Whilst at McDonalds we were talking about the show Hannah Montana, how much she loved Nick Jonas, and how excited for the movie she was.

Then, suddenly, she changed topic.

She started talking to me about how badly she didn't want to die, and how much she's going to miss us when she goes. She said she was excited to be with our late grandma, but that she didn't want to die first. She didn't want our parents to die, but she didn't want to die before them. Then she asked me if I would miss her, too.

Coming from someone who's conversation topics rarely stray from what's been on the Disney Channel recently, I was dumbstruck. So was our sister Sharaya when I told her the news. Beth never usually opens up to anyone about anything, let alone life's intricacies.

I guess you just never know what goes on in their minds.

nicknames

Beth goes by two names in my house: Chickenbutt and Bobin. Many many years ago Sharaya - the middle sister - and Beth started calling each other Bobin. (I think it had to do with Bob the Tomato from Veggie Tales, but I'm not certain...)

Anyway with this nickname between the two of them, Beth didn't feel right calling me 'Diana', so she came up with a new one. Where Chickenbutt originated from is beyond me, but that is the only name we are known by to each other. My parents used to correct her and force her to use my proper name, but it never lasted. I refer to Chickenbutt around my friends and coworkers before I register how ridiculous that probably sounds. Oh well! She is Chickenbutt. So, if you come across that name later on here...that's who it is. =)

honey, i shrunk her confidence

two weeks ago my fam took a trip to visit some extended fam in san diego. my parents & beth drove down, and i flew in a day later. on this trip, Beth and I went to Disneyland. (she hadn't been to a theme park since Disneyworld in 04). we started out on Pirates of the Caribbean - a tradition - and I didn't take into account the fact that she has grown increasingly afraid of the dark over the years. she spent most of the ride clutching my arm, and i talked her through most of it to calm her. at the end, she said it was fun, but she didnt want to do it again.

from there we went to Splash Mountain - her apparent favorite ride. we shared the log with a family of four, and Beth & I got the back two seats. she wanted to sit behind me, so she had the very very back seat. she's a hefty girl, so it was hard for her to get in, but she made it. she enjoyed that one a ton - she read every sign out loud and laughed at all the critters. thankfully the family we went with had two girls around the same mental age as Beth, so they didn't seem annoyed at all. when the ride was over and we were getting out was when it got pretty bad: I would always get in rides and out of them first as to help her getting in / out. I got out of my seat so she could step on it, but as she went to stand up, she couldn't pull her foot up high enough to get it around the back of my seat. I tried in vain to verbally instruct her, but she sat back down and just said "I can't do it!" By this point I was pretty embarassed as we were holding up the ride and our log members were long gone, replaced by the new group ready to get the ride going. The woman getting in my seat after me went in to help pull her up. After a few attempts she eventually got her upright and her leg over, and I helped her out of the log. I was mortified and utterly embarassed not only by the hold up, but by the fact that I just stood there and let someone else help. I apologized profusely, but the lady who helped her told me she had two cousins with Downs, and she understood. We repeated some rides that day, but everytime Beth brought up Splash Mountain, I would have some excuse as to why we shouldn't go back. Secretly, I just couldn't stand to go through that again.



I know its not her fault, and my dad always tells me "that's life - people need to learn to deal with it!" but it's a lot easier said than done. I don't like holding people up, and I don't like what they say when they're getting impatient. I know she knows people don't understand her, and she knows she's different, but I'm glad she doesn't know what people say, or why they won't understand her...





this blog isn't going to be depressing, I promise! I've just not been able to get this bit off my mind..

chickenbutt

It's interesting, I suppose, that I start this up whilst watching the latest episode of Glee - the one where they tackle the 'discrimination' topic. This has been a frequent topic throughout my entire life. My eldest sister has Down syndrome (and my dad is mortally obese, but thats another story for another time). Although my mom talks about how hard my childhood must have been - from getting flipped off in parking lots at the ripe old age of four, to dodging thrown rocks on the walk home from school - I don't really know any different. My sister is my sister; always has been and she always will be.

I decided to start this blog for an inside point of view. I know there are loads of parents that blog about their children, but none of them really have the insight siblings do. Parent know a life before Special Ed classes, siblings don't. Some parents have admitted to complete ignorance before having their child, siblings don't need books or classes to figure it out. Having Beth as a sister is difficult, confusing, irritating and hard but I don't really know any different.


She's crazy, funny, annoying and loud. She loves anything Disney - especially princesses! - and any decent musical. It's impossible to wake her up in the morning, and if she's in the middle of a movie, she won't move not matter what. She takes a walk everyday, and practices for her weekly karaoke group every waking minute of every day. She could eat Mcdonalds for days on end, and she is always in possesion of some Sprite. She has Downs and a thyriod problem, and throughout the years she discovered it was easier to let other people talk for her, and that people will generally get frustrated with her for no reason. The truth is, she's a lot more intellegent than she is given credit for. She's goofy, and she's my best friend.