Author: Doris

Believe it or not. One of the hottest news in Taiwan these days is about an old lady called Chen Shu-chu. The following is from Wikipedia about her.

Chen Shu-chu is a 59 years old vegetable vendor in Taitung Central Market in Eastern Taiwan. She gives generously with her modest incomes. She is selected as one of the Time 100 for year 2010 in the Heroes category[1]. She is also one of the 48 heroes of Philanthropy by Forbes Aisa[2].

Over the years, she donated about US$70,000.00 to the local charities. She has a bad foot which badly needs medical attention. She carries a US$3.00 bag and a big smile with her all the time.

After winning her honor from TIME magazine, originally, she didn’t want to come to New York to receive her honor. But with the urges from the President, County Chief, local officials and everyone else, she came with VIP treatment from passport officials, high ranking government officials, US visa office, airlines, pilots, flight attendants and fellow passengers.

It is really a Cinderella story that everyone here (Taiwan) is very proud of. I am too!

Today is the day that I found out I need to wear glasses. I knew this day was out there somewhere in the future – however, I did not think it was going to be today. Even after Sheila tested me and confirmed that my eyes were not 20/20 and I have known for a while that Jeremy could read signs (with his glasses) that I could not, I went into today’s eye exam thinking that I still didn’t need glasses. Mid- morning, Vince and I went to our Costco eye doctor appointment. I was sitting through the eye exam when I came to the slow realization that I was not able to read the smallest lines of text and in a sudden moment, I understood that I was not going to get out of getting glasses.

I don’t think it’s a very strong prescription, but when the doctor rigged up a set of lenses that had this prescription and I looked through them – I felt like I was seeing through my 15-year-old eyes. So clear and my eyes felt so relaxed reading text. What a great invention, glasses. I decided to order this pair.

Vince’s eyes are fine. They are 30 years younger than mine, so there are a lot fewer miles on them.

Then we had some pizza for lunch. Vince wanted to say that this was the biggest pizza slice ever. Costco. The land of the biggest.

Just got back from 2 days and 1 night in NYC. I went with a girlfriend to see a pal act in a play called Glass in the East Village. They performed at the Downtown Urban Theatre Festival . The play was excellent and it was so fascinating to me to be somewhere where I usually am not – eating sushi at 11:30 at night in the middle of NYC with a bunch of theater types.

Lots of walking and eating – I love that in NYC you can walk 10 minutes in any direction and have 17 different places to eat at – Mexican, Ethiopian, French, Italian, Japanese, Afghan, etc. I loved some of the cheapest and fastest places we at at – Pinkberry (frozen yogurt) and Moaz (falafel).

Got my very first ever manicure, my girlfriends got pale pink (very subtle), but I decided to go dramatic – fire engine red! I love them and I also smeared them 10 minutes after I left the shop.

Saw a great Broadway show about a bipolar suburban mom and I cried and cried for a whole three hours.

And I did some knitting!

I think what has been bothering Edda for a few weeks now is our regular (ha!) enemy, constipation. I think the poor girl has lost five pounds worth of poop in the last 5 days. It’s a fine line between uncomfortable constipation and entire outfits that need changing twice a day.

I like to keep Edda on a once-every-other-day schedule because this means that she can make it to the potty for her poops about 80-90% of the time which is just fabulous! But any less often and Edda gets grumpy and any more often, she doesn’t have enough control (to help us) make it to the potty. The amount of Miralax that Edda ingests each day is a little variable. You have to mix Miralax into liquids like juice in order to ingest it and Edda’s liquid intake is highly variable (mainly not drinking enough, but every once in a while, she’ll surprise you by drinking two cups at a go), so the amount of laxative ingested each day is a little different.

Anyways, it’s been a messy five days or so (at school mainly – I need to send them some cookies or something), hopefully Edda is feeling better. She’s still a little fussy sometimes, but a lot less than before.

Vince has been engulfed in a three-day-long standardized test this week at school. You can read about the Terra Nova 2 test: here. All 2nd graders throughout the county take this standardized test and they have been preparing for more than a month. Every week, he got thick practice packets with little scantron bubbles to fill in with a number 2 pencil and we plowed through them all.

Vince also really wanted to participate in an after-school sports program which is sort of introduction to all sorts of sports. This show of enthusiasm was really surprising to me. He’s kind of been nervous about being on any sort of athletic team where there is a clear winner and clear loser. We even needed to get a mouth guard – a strange object in our house. Last week, he learned how to play flag football. This week it was baseball – he said he played “first plate”.

I finally learned how to get photos off of my phone. I know I’m a little late to the party, but what can I say, I’m almost 40, I am an old dog. I got all excited a few weeks ago when I got my first photo “text” message because I didn’t know my cheap-o phone could do that, but apparently it can. Woo hoo. So this blog post, you are treated to terrible quality photographs, but at least there are some.

On Sunday, we drove into DC and went biking with the scouts on Beach Drive. On weekends, they close the road to traffic and you get to ride along a beautiful tree-lined road and next to what I assume to be Rock Creek. The spandex-clad folks with the fancy bikes were out in full force. We had to take 2 cars, but we managed to bring 2 adult bikes, 1 kid bike, 1 special needs trailer, 2 kids, 2 adults and 4 helmets. Who needs the freaking minivan?

Both adult bikes have large baskets and lots of headlights/tail lights for commuting in the dark. Kind of a pain for recreational riding and a pain to fit into the car.

Edda’s seating needs to be a little better. There isn’t enough side bolstering for her to sit straight up the whole time. Jeremy is considering putting her car seat into the trailer. Edda slept on the way out, on the way back, she needed a little bit of Barney played on Jeremy’s Crack-berry to keep her company.

Almost a year ago, I got Vince the next-sized-up bike at Goodwill for $20, but he is resisting going over to the hand brakes and gearing. A bunch of kids his age are on to bikes that are even bigger than the next-size-up bike. I could see him up near the front of the pack, pedaling ferociously to keep up with the leaders with the geared bikes.

Today was a much needed down day for the family. Not a single thing scheduled which is rare for us on a spring Saturday. Vince played with the neighbors, Edda watched some TV, I worked on some crafts and Jeremy took a nap! All good things.

We got a new drill, but we did not actually get around to drilling anything:

I made some crafty felt flowers.

It is the end of the week! Hooray! I’m feeling much better because it’s my favorite time of the week, Friday night.

Jeremy is making a 1 day business trip to Chicago today – it might be the first time where he’s gone on a business trip without any extra underwear in his carry-on. He was suppose to get up at 5 am to make his 7:15 am departure time, but the alarm didn’t go off. I woke up on my own at 5:30am and then mumbled to him that he was late already and then I heard mad dashing around the house and I suppose he was out the door at 5:38 am. He did make the flight and I think is getting on his homeward bound flight right now for an ETA into our house at midnight.

We did manage to give Edda a haircut on Wednesday night.

I know you can’t look a borrowed camera in it’s mouth, but the f 3.5 aperature is just killing me. My indoor shots are all way blurry. I guess I just need to set the ISO higher.

In other interesting news, we are slowly getting the school system to work with Edda on using eye-gaze computer technology which is a pleasant surprise. I have not really pursued this kind of equipment for Edda on our own for a number of reasons, mainly because of cost and also because I know, like my beautiful piano or stationary rower which were kind of pricey things (but not as pricey as the eye gaze computer), I start off strong and excited about such things and then as it becomes clear that it’s not instantly amazing and rewarding and is a lot of work, it ends up gathering dust in a corner and making me feel guilty. This is a pretty lame assessment of the situation, but it is what it is.

So the school is going to do a lot of the work for me and they are excited about it. Although they did warn me that it’s not easy and they have tried it on a number of other Rett girls in the county already and it was hard to get calibration and/or a long enough dwell time to make the eye gaze a produce a EUREKA! moment. I was not surprised about the difficulty in using the system, my surprise was hearing about the other Rett girls who were trialing eye-gaze systems. I know a few other Rett Syndrome families in the county, but the county’s augmentative communication specialist seemed to imply that there were more families than those I am aware of and apparently they are more proactive than I am in pursuing communication goals. I feel a little like I’m a day late and a dollar short.

This is also kind of a lame reason for not pursuing these special communications systems, it’s more of an engineering reason rather than any sort of educational reason. When Edda was diagnosed 4 years ago, the eye gaze technology was really not readily available and the Rett Syndrome community was excited about the Tango. The Tango is a touch screen driven communcation system which is rather cute. I was talking on the phone with the Tango sales rep a few years ago and complaining to him – why does it have to cost $8,000? Couldn’t they just put their software on an iPhone and make it available for something like $500-$800? He answered back that the Tango did so much MORE than the iPhone and I replied that the Tango DID NOT MAKE PHONE CALLS. It now occurs to me that the could put it on the iPad and hopefullly it would still be quite a bit less than $8,000. Anyways, I know it’s a supply/demand situation, there are never going to be as many people who want augmentative communication devices as those who want the iPhone, but I’m hoping that the prices go down. $8,000 – $17,000 is way too much money for me to spend on something that I think needs to be cheaper. I’d rather buy a minivan.