Saturday, August 30, 2008


Dave Hingsburger, whose blog I read daily, passed along a challenge today. It goes like this: describe yourself with five adjectives. Go ahead, do it right now. How does your gut describe you before your brain starts analyzing? Here are my five:

Tired. The boss of me (AKA Emma) has been waking at night, and getting up at the butt-crack of dawn for weeks now. Tired has become so deeply engrained in my persona that I don't think I'll ever extricate it.

Passionate. I rarely do anything half-assed (unless it's a household chore!). I'm a passionate advocate for my daughter and others with intellectual disabilities. I'm passionate about cooking, gardening, reading, and my family. Try not to mess with me or the people I care about, because passionate quickly becomes fierce. That could get ugly.

Welcoming. People like to talk to me, and I'll talk to anyone. I love hearing their stories, and learning about what makes them unique. It's amazing what you can find out when you just listen - when we were in Boston this summer, I spent half an hour talking to a woman in her 70s about her children and grandchildren. Turned out one of her daughters has a pretty severe learning disability, and back in the late 60s, she fought for her daughter's right to an education and won. Without that welcoming part of me, I would have never known I was talking to one of the moms whose shoulders I stand on every time I advocate for Emma's education.

Optimistic. I am without a doubt a glass-half-full gal. I've been called Pollyanna many times. I just happen to truly believe that things happen for a reason, and they're going to work out the way they're supposed to. I'm not religious, I'm not sure if there's some plan in place, I just believe everything's going to be okay. This belief has gotten me through some tough times.

Control freak. Yes, I know, that's two words. And I could just call myself freak, but that wouldn't have the visceral impact of "control freak." You all know someone like me - the person who can't let go of any detail, who insists that things be done a certain way, who gets seriously stressed when something is "wrong." When my meds are working, this control thing is less of an issue, but what can I say - my doctors and I are playing med roulette to find one that will work properly, and my inner control freak is currently front and center.

So what were your five words? One of the questions around this challenge is whether people will describe themselves with words like gay, disabled, white, black, man, or woman. Did you? Leave me a comment and let me know, or a link to your blog if you write about this.

Friday, August 29, 2008

Out of quarantine!

George and Lucy came out of quarantine yesterday. Emma is delighted, the dog is confused, and the old cat couldn't care less. George and Lucy are pretty pleased with this turn of events as well. I think they were getting tired of having only one room to explore.

Thursday, August 28, 2008

Girl Scouts rock!

Yesterday was our GS kickoff meeting - we had an ice cream social, and all the girls had a good time. Our Daisy troop has doubled in size, from five to ten, and this year I'm co-leading the troop (I'm also our Service Unit treasurer)! Yesterday's meeting included some Juniors and Cadettes, and the younger girls really enjoyed learning and interacting with the older girls.

Girl Scouts are an inclusive organization: they welcome all girls, regardless of ability, ethnicity, income level, or background. Later this year, I'll be working on a recruitment drive to reach out to families with girls with special needs. Sometime next year, I'll be training other leaders on how to welcome girls with disabilities into their troops. I think it's going to be a good year for scouting in our area.

Here's a picture of my Daisy. She's too cute!

Wednesday, August 27, 2008

Special Exposure Wednesday

5 Minutes for Special Needs

Memories...this was such a fun day at the zoo! Emma fell in love with this sculpture, and snuggled right up to it.


Thursday, August 21, 2008

We are Big Pharma

Ever feel like you're single-handedly supporting an industry? Back when E was getting sick constantly, I felt that surely we must have paid for her pediatrician's new car. These days, it feels like the pharmaceutical industry is all about building its profits on our backs.

Okay, it isn't really that bad. But yesterday, we got our monthly reminder call that DH needs to reorder his Enbrel. This is a med that helps keep his rheumatoid arthritis under control, and it would cost about $1400 per month if we paid for it out of pocket. That almost equals our mortgage payment. We don't pay full price, thanks to insurance, but co-pays are beginning to add up. Between the three of us, we take a total of 12 daily prescription meds. During the winter, it's 14 - E takes two additional meds in an attempt to stave off sinus infections and croup.

In an average month, we'll pay between $150 and $200 just for medications. And that's with pretty decent insurance! I know of far too many people who are underinsured, and the cost of drugs is dragging them down. More and more companies are instituting tier systems for their prescription formularies, and name-brand drugs like Enbrel are at the top. They're also putting caps on prescription costs, leaving even more of the cost on the shoulders of patients.

What's a person with a chronic condition to do? Tier 4 drugs like Enbrel generally don't have generic alternatives. If you shop around, the price is pretty much the same, no matter what pharmacy you go to. It's pretty prohibitive for middle-class folks, and downright impossible for anyone who is low-income.

There are a few options. You can research the manufacturer of your medication to find out if they have a payment assistance program - there are a couple of websites that can help you with this. and The Free Medicine Association can help with this. You can find out if you're eligible for government medical assistance programs, but it's often difficult to qualify for these. You can also go without your medication - not recommended but sometimes necessary.

If you're in this situation and your insurance is provided by your employer, make sure your employer hears about it. Talk to your HR department, and let them know that this is putting a strain on you financially and emotionally. There are still some companies out there that care about their employees, and even if they don't, they're often interested in things that can improve employee productivity.

Finally, you can contact your legislators. And you can vote. While this won't result in immediate results, it's the only path to systemic change for the healthcare system. Talk to your public servants at the state and federal level. Let them know how drug costs are affecting you, and ask them what they plan to do about it. Make sure you know where candidates stand on the issue before you vote for them. All our little voices together can make one BIG voice that will be heard, even if it doesn't always feel like it.

Wednesday, August 20, 2008

I just can't let it go (the Tropic Blunder debate)

Has anyone visiting here not heard about Tropic Blunder and why the disability community is so up in arms about it? I had an editorial printed in our local paper (which a few people actually read!), and I was pretty proud of that bit of writing. Today, I read a letter that blows everything I've read up till now out of the water. Let me introduce you to John Franklin Stephens. He's a Special Olympian and Special Olympics Global Messenger. His words should be the last on this subject.

A lot of people are talking about the movie "Tropic Thunder" that opened in theaters last week. One of the reasons that it is being talked about is that the characters use the term "retard" over and over. They use it the same way that kids do all the time, to jokingly insult one another.

The people who made the movie, DreamWorks and Paramount, and many of the critics who have reviewed it say that the term is being used by characters who are dumb and shallow themselves. You see, we are supposed to get the joke that it is only the dumb and shallow people who use a term that means dumb and shallow. My dad tells me that this is called "irony."

So, what's the big deal? Let me try to explain. I am a 26-year-old man with Down syndrome. I am very lucky. Even though I was born with this intellectual disability, I do pretty well and have a good life. I live and work in the community. I count as friends the people I went to school with and the people I meet in my job. Every day I get closer to living a life like yours.

I am a Global Messenger for Special Olympics and make speeches to people all over the country. I once spoke to more than 10,000 people at the Richmond Coliseum. I realize that I am a voice for other people with intellectual disabilities who cannot easily speak for themselves. I thank God that he gave me this chance to be someone's voice.

The hardest thing about having an intellectual disability is the loneliness. We process information slower than everyone else. So even normal conversation is a constant battle for us not to lose touch with what the rest of you are saying. Most of the time the words and thoughts just go too fast for us to keep up, and when we finally say something it seems out of place.

We are aware when all the rest of you stop and just look at us. We are aware when you look at us and just say, "unh huh," and then move on, talking to each other. You mean no harm, but you have no idea how alone we feel even when we are with you. That is why I love being a Global Messenger. I work for days telling my dad what I want to talk about and he tries to write it down for me. Then we do it over and over until we have something that says what I mean. We wrote this letter the same way.

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.

You don't mean to make me feel that way. In fact, like I say in some of my speeches, "I have always depended on the kindness of strangers," and it works out OK most of the time. Still, it hurts and scares me when I am the only person with intellectual disabilities on the bus and young people start making "retard" jokes or references. Please put yourself on that bus and fill the bus with people who are different from you. Imagine that they start making jokes using a term that describes you. It hurts and it is scary.

Last, I get the joke -- the irony -- that only dumb and shallow people are using a term that means dumb and shallow. The problem is, it is only funny if you think a "retard" is someone dumb and shallow. I am not those things, but every time the term is used it tells young people that it is OK to think of me that way and to keep me on the outside.

That is why using "retard" is a big deal to people like me."

My life.

Three things take up most of my time these days...Emma, Lucy, and George.

We got our kittens on August 2nd, and they've been a lot of work! It's been 17 years since we adopted our last shelter kitten, and I forgot all the problems that can come with them. They both had fleas. Lucy had a terrible upper respiratory infection and a claw that had been somehow ripped out. George had (and is just now starting to recover from) diarrhea. They've been quarantined since we got them to protect our senior citizen cat, and I've spent many days taking care of them (did you know that saline spray helps kitties with colds, just like people?), giving them meds, cleaning runny eyes and noses, taking field trips to the vet, changing nasty litterboxes, and cleaning out poopy bathtubs. Emma's dying for them to come out of quarantine - she's only allowed to play with them when I can supervise. They're finally getting healthy, and we're hoping in another few days we can start introducing them to the world outside Mom and Dad's bedroom.

Tuesday, August 19, 2008

Well, I've gone and done it!

It was bound to happen sooner or later. Almost everyone I know has a blog, and I finally caved to the pressure and started one of my own. I have to admit, I love the idea of having my own soapbox to stand on anytime I want.

The name Fall Seven Times comes from a Japanese proverb - Fall seven times; get up eight. I think everyone who reads this knows, but my daughter Emma has Trisomy 21 (Down syndrome). She's taught me a lot about getting back up every time something in life knocks you on your keister. The title seemed appropriate.

Keep tuning in for more! My life is incredibly glamorous and exciting (NOT!), so you don't want to miss a thing.


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