Arlington and Washington!

Last week I did things. Well one big thing that had 4 different things in it.I got to spend a few hours playing tourist in Washington DC. I attended a conference in Arlington Virginia. Part of the conference was going to the capital and lobbying for a cause. I also went for a run. I will kind of talk about these things separately

I took a 5:00 a.m. train out of Moynihan Hall so I can get to Washington DC and have breakfast with one of my old high school friends. It was really great catching up. And it was great to get the advice of a local on how to spend half a day in Washington DC. I got a train pass that was good for the whole day and decided to get to the hotel first and check my bag. I had to take the Metro to a stop called Pentagon. I assumed that was the name of a neighborhood.But not so much. Going up the escalator it was made very clear if you went to the left without permission you would get in trouble.I should have taken picture but there was a sign that very clearly said don't take pictures.At the top of the escalator was a very serious fence and a guy holding a rifle.I went to the left to get a bus to my hotel. After I left my bag there I got back on the bus to the Metro and went to DC. Having gone to all the touristy history and science museums as a kid and with my kids, I decided to hang out with the art. I've learned that it isn't important to see everything in a museum. Especially in art museum. When I saw this piece I decided to sit down with it for a good half an hour. At first I thought it was something new. But it was created in 1967. I only later noticed that her name was similar to mine. We are not related

I also took the Washington Metro. It didn't go unnoticed that this was a mass transit system that was built

all at once relatively recently. It is completely accessible for people who are mobility impaired and can't climb stairs.That did not go unnoticed. But I noticed another thing and I'm going to be bringing this through the attention of the New York City MTA.... This Disability sign this sign says that Federal law requires that these seats be available to passions with disabilities.....  Below is the sign that is in New York City buses and subways. It says" won't you please give this seat to the elderly or disabled." these are two different kind of signs.In Washington DC it lets you know that you should not be sitting there unless you're really need the seat. It needs to be available to those who need it.In New York City it's kind of an invitation to plop down. People in New York aren't looking around when they're sitting in the subway. They are minding their own

business.Not looking out for people with disabilities who might need the seat.So it's going to be up to the disabled person to ask for the seat.This is not cool. I'm one of the people that gets to talk to the MTA about their accessibility issues. I'm putting this on the agenda that these signs should change. Also perhaps an announcement regularly on buses that says please move to the rear of the bus and don't sit in the front seat unless you really need to

On the second day of the conference I woke up at 4:00 in the morning. At 5:00 a.m. I got in an Uber to the Arlington Bridge. I ran over that bridge and it took me right to the back of the Lincoln Memorial. I went up the stairs and realized that this is one of those rare moments that I was completely alone in this iconic monument. I took a picture but you can Google a better picture of the Lincoln Memorial. And then I ran across the National Mall. Past the Washington Monument and all the way to the Capital. Then I doubled back and ran to the White House.To the right or some crappy pictures I took. I would point out that I ran as the sucrose and Washington was quite clean and I felt very safe.It was a five and a half mile run and here  my Strava

I should also mention that I got to visit the Capital Building.But I didn't go in as a tourist. I had an appointment to meet with the staff of my congressman. There were four or five of us who went in to see them and I was selected to talk first. My role was to introduce the staff to what Guillain-Barre syndrome is. How it can happen to anybody.Because I am anybody.And I happen to be the only anybody that was a constituent of Dan Goldman.I immediately went off my script. Because the staffer mentioned that she never heard of Guillain-Barre syndrome.And the first thing I said to her was how happy I was for her that she never heard of this terrible disease. She was lucky, I told her that I sincerely hope that she never hears of this illness again. Then I delivered my speech.I don't want to go into the details of my speech here because it wasn't even that important.But what I do want to say was that when I first walked into the office I was upset that the person who we are going to talk to was a child. That's kind of how I felt. At first I felt we were being disrespected because the staffer looked like a college student. But after we spoke I realized that my first impression was completely wrong.My actual impression was that I was really glad they sent us a young person.She was clearly as honored to be in the room with us as we were to be in the room with her.

The top photo in the photo collage shows my team. We are the group that wandered the halls of the capital in order to influence our leaders. We were actually only in the Rayburn office building which is physically connected to the capital. But we will polite and greeted appropriately.We did not storm the building.The colorful picture in the center is AOC.'s door It was cool I had to take a picture

The conference was fantastic. It's the third time I've been to the GBS/CIDP international biannual conference. The first time I went to San Diego. The second one was in Jacksonville and this one was in Arlington. It's great to meet people who have my rare condition and at this point I'm kind of the guy giving other people advice.I even met someone who is running marathons while living with Guillain-Barre syndrome.

LET ME TELL YOU ABOUT MY KIDS ;)

August 17, 2018

It was almost 4 1/2 years ago, and I remember it very clearly, because I was lying in a hospital bed....  Nicholas came back from his orientation that he had to attend before starting to volunteer at the Prospect Park Zoo. He was very excited.

"It's a tiered program. If I stay long enough they might let me narrate the sea lion show"

I might go back again today and recorded again, holding the camera the correct way

June 22, 2018

It finally happened. (No, we all knew they were going to graduate) Today there was an unresolvable conflict. Nicholas graduated from the Harbor school on Governors Island at 11:30 in the morning and Sabrina's graduation from LaGuardia began at 12:30 and David Geffen Hall in Lincoln Center. I went with my mother-in-law to Lincoln Center and my wife (who actually made it to an 8 AM work meeting) watch Nicholas graduate on Governors Island. Then Stephanie and Nicholas met us at Lincoln Center so we all can go out to lunch together.

I'm glad my wife beat me to it and raised a water glass for a toast at lunch because I was thinking about it all morning.

I was worried that if I raise the glass and started to talk I would totally lose my mind. Four years ago I couldn't lift my hands off the arms of my wheelchair. I literally couldn't wrap my mind around actually holding a glass. I remember watching people do it and I didn't know how they did it.

I didn't want to make a toast that was about me on their graduation day. I just want to let them know how glad I am that I didn't die four years ago.

Updated for Sabrina May 12th 2018

Yesterday was exciting but it turned out only to be a warm-up for today. Yesterday I got to see Sabrina's senior showcase at her high school. To the left is a wide shot of the whole thing and you can click here for an album containing all the images.

But today was really exciting. Today one of Sabrina's pieces was on exhibit in a Brooklyn gallery. To the right is the flyer for the event. Yep, that's Sabrina's work! Check it out. Today through June 9th. What About Us? Sponsored by ArtsConnection and the Dedalus Foundation. 254 36 Street between second and third avenues in Sunset Park Industry City, Brooklyn.  https://teens.artsconnection.org/tct/

Pride is an understatement. So many people were congratulating her, thanking her for a painting and for the description that went with it.

.........................................................................................................................................................

Alright, I got my hand out of the splint and I could use a computer mouse again. So before I start talking about my accomplishments, let me tell you about my kids.

You may or may not know that I have twins who are now high school seniors. And wow, has high school changed a lot in New York City in the past 30 years. I went to Sheepshead Bay high school because it was the school closest to my home. It was the 70s. We sat on radiators because there weren't enough desks. The teachers and security guards were our drug dealers. Being mugged in the hallway on the way to the bathroom was taken for granted. I survived. Four years ago my kids got to choose which high school they would go to. It was a frustrating process but the outcome was wonderful.

My daughter is winding down her experience at LaGuardia high school. Officially called The
Fiorello H. Laguardia High School Of Music Art and Performing Arts, unofficially called "the school they made the movie Fame about". It is also the school people think when they receive their Tony, Oscar or Grammy. She's not in the drama or vocal departments Her program is art. And she made this self-portrait. It was part of an art exchange program. She got to see a performance of Dear Evan Hansen and the star of the show got to have her art hanging in his dressing room.

When my kids was still in fifth grade I got my first paid gig helping organize a running race. It happened to be on New York's Governors Island. A New York City public high school just opened on the island and the kids were the bulk of the volunteers at the race. Part of my job was to supervise them and I was kinda nervous because I wasn't used to dealing with teenagers, my kids were only eight years old. But they were amazing. They all were on the super early ferryboat and did everything they had to do from filling water cops and keeping them from blowing into the harbor to picking up the ones that didn't make it to the garbage pails. My kids was still three years away from choosing high schools but I asked these Harbor School students what they thought of their high school. "My kids are still in fifth grade but should they go to the school?" Their enthusiasm was remarkable. They jumped up and down telling me how excited they would be if my kids would join them. And that attending their school was the greatest decision we ever made.

So for the next 2 1/2 years I kept the idea of choosing the Urban Assembly New York Harbor School as a choice for my kids. And it turned out to be an excellent fit for Nicholas. Because he attended the Harbor school he got a chance to present his work at the New York City science and engineering fair. He can do it better than me but let me try to explain what his project is about..

http://nycsef.cuny.edu/

Using the scientific method he has been experimenting with different types and different shapes of concrete that can be used to build the seawall that surrounds New York City. He has been supervising the people who pilot and maintain small boats that his scuba team traveled on to place samples of concrete around the perimeter of Manhattan Island. Using underwater cameras or by retrieving the samples he has been determining which samples of concrete will attract the most sea life and last the longest.(I know you can't read Nicholas's poster board here is a link to the document on Google drive so you can zoom in.) So, he is basically trying to figure out how to improve the perimeter of Manhattan Island so that more sea life will be attracted to it. The sea life will help clean the water. (Nicholas, please improve my description of your life's work in the comment section below)

We are waiting for all the acceptances/offers and then decisions get made. But, wow check out this email one of my kids just got,

Dear xxxxxx, Following the recent tragic shooting at Marjory Stoneman Douglas High School in Parkland, Florida, students across the country have rallied together to advocate for change in gun control policies in an effort to prevent future mass shootings. Some high schools have stated that students who peacefully demonstrate through walkouts and other non-violent forms of protest may face discipline and even possible suspension. We want to remind our prospective students and our current community that xxxxxx was founded on the belief that courageous public discourse fosters a just and thriving world. With that in mind, Xxxxx will not rescind admissions offers to prospective students who face discipline for peaceable protest. As is our practice, we would ask that students let us know if they have been found responsible for a disciplinary violation.  However, to reiterate, given that thoughtful dialogue and civil, civic discourse are central to our institution, disciplinary violations for peaceful demonstrations or walkouts will not jeopardize a student’s admission to Xxxxx . Best, XXXXXX Vice President of Enrollment Services and Dean of Admissions

Needless to say the school is in New York City

I know I did one thing right

I'm not saying I don't do a lot of things right but this one I know I got right.

Daddy daycamp began almost as soon as my kids were born. My wife was working from home then she went back to school.... It was my job to keep the kids occupied and I loved it. I waited until they were eight to quit my full-time job, I should've done it the day they were born. But that's another story

I embraced being a dad by embracing New York City.  Every day with my kids was like a new day in a new city I just acted like a tourist and had fun.  We became familiar with all the iconic institutions that make New York City great.  We were regular at the American Museum of Natural History, the New York Hall of Science, and all the institutions of the New York Zoological Society.  I realized that these places were just for staring at cages or artifacts.  They were places to work or volunteer.

It occurred to me that when I was a young teenager my summer opportunities were limited to two different kinds of things.  Hanging out at the beach/pool club or getting a crappy job.  I did a little of both until I was about 19 or 20.  Hanging out was not good for much.  I had jobs fast food restaurants and retail establishments.  Looking back those jobs were worse for me than doing nothing.  If your first job is a fast food restaurant you learn to hate going to work, you hate your boss and you hate the customers.

When my kids was still in diapers I noticed the youth guides at the Prospect Park Zoo.  They were cheerful kids who would hang around exhibits and help engage my toddlers.  I asked one of them how young they could be to start volunteering there.  The kids said 14, then I knew where my son would be in 10 years.  You see, as far as I'm concerned when it comes to domesticated animals in the cage that out of the cage it's just vermin.  We did the gerbil thing, we also had a few turtles and a handful of fish.  As far as I was concerned it would've been much more efficient and less smelly if we would've just flushed money down the toilet.

Someday, he might narrate the show

Last winter, I didn't push my son very hard... I gently let him know that he was now old enough to be a Discovery Guide at the Prospect Park zoo.  My prodding was very gentle.  He was almost 14 and I knew I pushed him too hard he would push back.  (Because I remember when I was 14 my parents would've told me to be careful on train tracks I would've been hit by a train.)  I just sent him a link and let them check it out himself.  I would've gone with him to the orientation but I was in intensive care.  So maybe the fact that he went by himself made it work out all for the better.  When he came to visit me in the hospital he told me about the program.  I will always remember his exact words.  "Dad, it's a tiered program, if I stay for all three years they might let me narrate the sea lion show. "  Bingo, I knew my son was not to make minimum wage at a fast food restaurant.  He was going to make friends and gain experience at the zoo.

He was there to three days a week all summer.  And I spent the whole summer in the hospital.  When the summer ended he switched to a weekend program and was there every Saturday.  Last week I got a new electric chair.  Being pushed around the zoo wasn't that fun but it was nice when I got to drive myself there.  This Sunday I son took a busmens's holiday and gave me a tour of The Zoo.

Apparently, this goat is called Ringo

With pride he told me the species name of most every animal in the zoo he also told me they were called.  He told me which sheep were friendly and which ones were grumpy.  He introduced me to all the other volunteers, and I got to meet his boss.

There was a lot of good feelings going around.  My son was proud of himself and I was pretty proud of him to.  And in a little way I was pretty pleased with myself for steering him in that direction.  I was also very happy to be out of the house in my new Electric Chair

Back to DC

6 years ago we took a family trip to Washington DC.    I remember that I thought The Air and Space Museum was stall.  It't exhibits seamed to have stopped at Skylab and it facility was outdated.  I made a big deal that they just devalued Pluto to a planitoid.

Look at this photo from 2007 at my cute kids.  I got them to point at the black vinal cover over Pluto.












Look to the right.  It is 2013 and all they did was replace the tape with hard plastic.

Yea, but now it is not, and the Smithsonian needs to do more than cover it with black plastic.

However, the Smithsonian Air and Space Museum is not totally stale. Just the park in Washington DC.  They have an annex in Chantilly Virginia.  Really in Dulles Airport. Yea, it has a Lockheed SR-71 Blackbird, a Concorde, and the space shuttle Discovery.   They have so much cool stuff there that they don't even mention that the friggen Enola Gay on their home page.

So the Main branch of the Air and Space museum has not really change much since I was 13 and the "Annex" by Dulles is the opposite.

Hey, it was not really free like the rest of the Smithsonian, there really was not a way to get there without driving 33 miles and paying $15 to park but so what, it was a great place to spend the afternoon.  Unfortunately that wold take over 2 hours on public transit.  But fortunately that keeps the less adventurousness tourists away.  It a way it reminded me of the New York Hall of Science in Queens, because so many tourists wont leave Manhattan.

Back to Queens.

We go to the Prospect Park Zoo quite a bit.  It is quite lovely and only a 10 minute walk. The Aquarium can be part of a nice day in Coney Island. We have often made a day of the Central Park Zoo or The Bronx Zoo.  We have driven 100 miles just to go to the Adventure Aquarium in Camden or out to out to Eastern Connecticut.

But I think one of the most underrated zoos in my area is the Queens Zoo.  It is just a 20 minute drive away and next door to the New York Hall of Science.  It was also totally devoid of any tourists.  I think most people have a zoo their their own house that they think is not "Great".

It is Great, it is bigger than the Prospect Park Zoo and a lot smaller than the Bronx Zoo.  But from some angles it is as big as the Bronx Zoo.

and a block away is the Lemon Ice King of Corona.





The we went over to William F Moore Park to enjoy our ices and watched some Bocce games.

The players really did not look like the types that wanted their pictures taken, so I just took a photo of the scoreboard.

One day I will not be able to run anymore, then I will ride my bike a lot.  If I can no longer ride I hope I can play bocce.  It really looked like the sport for me.

and now I know why I had some deja vu

I hope I am not being repetitious

But the New York Hall of Science in Queens is really great.

Yea, great.  It was gonna be another 95 degree day, so we needed a big fun air conditioned place to hang out.  My kids each invited a friend and they are at the point where they are big enough that I do not have to follow them around the museum.  The kids had real fun,  Without me hovering, I think they actually spent more tome enjoying each exhibit.

Also, without having to chase the kids around, I go to enjoy the museum even more. I got to see how beautiful science can be.

In order to demonstrate how comets might collide in space, they have a device that drops little chunks of dry ice into colored water.


I could sit and look at that thing all day.

They also have a Ferrofluid Magnetoscope.  (that is spelled correctly, stop blinking)

Iron particles suspended in some sort of liquid.


The liquid was separated from a pair of magnets by plexiglas and the kids were able to move the magnets up and down.

They also have an exhibit that shows how your eyes and your brain don't really work together correctly.  You absolutely can not tell from my photo but the shadows seamed to be spinning in the opposite direction from the objects that were blocking the light.

Maybe the next time I will just drop off the kids and go for a run.

A quick trip to The New York Hall of Science

I was looking for a place to enjoy some AC.  My son and his friend could care less that it was hot and sunny.

How can an eleven year old not play mini golf in a rocket park

Or a Science Playground

I did get them to See The Light and get some cool air

I am sure I will be back soon.  I have twins.

Does This Happen All The Time???

I live going to the Liberty State Park Science Center.  Getting there is half the fun.  Yea, I could drive, but if I move my car there will be no place to put it when I get home.  Every empty spot in Park Slope is instantly filled with snow.

Anyway, it only takes less than an hour to take the IRT to Park Place (20 minutes), walk to the PATH station at the World Trade Center (5 minutes), take the PATH one stop to Exchange Place (15 minutes, if you have to wait), and take the Hudson Bergen Light Rail to Liberty State Park (15 minutes if you have to wait).  It is actually quicker than taking the 7 Train to the NY Hall of Science.

The light rail is kinda fun.  It is a brand new trolley. The first half of the short trip it rides on a regular street, then it gets its own "road" to the park and beyond.

Not so quick today.

Some schmuck attempted to drive his car past the 3 DO NOT ENTER signs and go on the tracks.  Not so far.  I think he woulda gotten stuck if there was no snow.  Because I was with 2 10-year old boys we ride in the front.

Where was this guy trying to go..............

So the Light Rail had to back up onto a road with traffic going he other way.  Then we go on the next trolley and had a great time at the museum

Road Trip

It was a cold rainy day today. Great museum day. From my experience the Natural History Museum or the Hall of Science would be packed. But I have a car. It was Great day to go 75 miles away to a museum.

I picked the Discovery Museum in Bridgeport Conn because it looked like my kids were about to outgrow it. Some of the stuff was for kids smaller than 9 year olds. The place was not very crowded. If fact, some of the rooms were empty. My kids thought the place was closed. They got over that pretty fast.

They have a planetarium. We stayed for two separate shows. The first was a video. It was like Thomas the Train becomes a star. The kids and I all thought it was kinda creepy. I found a clip on YouTube. Check it out. We also stayed for a second show on the history of the telescope. It was a little more grown up.



Then he turned on the thing that shines stars on the ceiling. The planetarium guy (that is how he introduced himself) took questions at the end. Mostly people wanted to see their astrological sign.No matter how many times shows me a constellation I don't see anything. I think it is a birth defect. There are worse miladies.

I had two questions

• What is the deal with Pluto? When I was a kid it was a big deal that we had 9 planets, now we have only 8. He said there are 8 planets and 5 or 6 "lesser planets". But it might go back to the way it was because the planet nerds are still fighting.

I also asked him

• Is it really darkest before the dawn? He tried to answer me so I changed the subject.

This is the view from their back window. Nice

DDC Day 21: The Queens Museum of Art and the Hall of Science

Today we had a double feature. Not movies but attractions. I have wanted to go to the Queens Museum of Art for a long time. I just wanted to see the "9,335 square foot architectural model includes every single building constructed before 1992 in all five boroughs; that is a total of 895,000 individual structures." My camera did not do it justice but to the right is a photo from the museum's web site.


The kids were bored out of their gourds. I figured they would be. To the left is a photo I took of the kids enjoying a giant elevator. I will go back there when the kids are in school.


Then we walked over the Hall of Science. We did that on Day 11, but today it did not rain (too much).




So we were able to play in the Science Playground. Lots of fun.









and the Science Rocket Park Mini Golf. more fun












Then we had dinner at the last Janh's restaurant in Jackson Heights. There used to be a lot of Jahn's restaurants in NYC. I remember having a (9th, 10th?) birthday party at the Jahn's on Nostrand Ave in Sheepshead Bay. The Gyro was good, not made from frozen meat.

We were 3 kids and 2 adults. They had lots of room but they sat us all the way in the back, so we would not bother any of the regulars. Then a group of 7 came in all wearing Yankee shirts. They were seated behind us so we could punish them......All good in Jackson Heights.

DDC Day 11: New York Hall of Science

We were gonna go to the beach but there was some rain. I figured if the rain let up we could play on the new Rocket Park Mini Golf course (thanks NY Times for the photo). Well, you cant play golf on wet rubber either.

We stopped at The Lemon Ice King of Corona on the way there. I figured out what makes their ices so good. Not so sweet. Real ingredients. Duh.

Anyway, as we drove into the parking lot for the Hall of Science I saw something that gave me the shivers: A billion school buses. I knew there would be campers but Sheesh. They were a little wild, a little.

At exactly 2:30 there was a loud poping sound. It was the noise of every camper leaving at the same time. The next time we got to a museum like this on a summer weekday we arrive at 1:30.

The Transit Museum in Brooklyn Heights

Usually The Transit Museum is the first choice of Boy when Girl wants to stay home with Mom. But, today it was Girls choice for the whole family.

We have been there so many times we don't even have to show our membership card. But that membership card is great. It has gotten us into lots of other great places like, The Staten Island Children's Museum, The New York Hall of Science in Corona, Queens, The Liberty State Park Science Center in Jersey City, The Franklyn Institute in Philadelphia, the Maryland Science Center in Baltimore and Museum of Science in Boston. That is the list of the places we have been to for free with our membership card. The potential list is here. Big list. When you are a member you go more often. I do.

Every Saturday and Sunday they have some great stuff for the kids to do. Today was

"Saturday, April 11 at 1:30 pm
INSIDE OUTSIDE
After reading The Inside-Outside Book of New York City, we'll create colorful "inside-outside" picture books to express our visions of subway travel. Ages 5+"

They got to make a little book. The cover was the outside of a train, then the inside and the last page was what you see outside the window.

My kids are really great artist. Yea. But the cool thing is that they sat for an hour and focused one thing. That's cool.

Then we went downstairs and looked at the old subway cars. I think the Museum put some new "old" ads in the old cars. I noticed some had a political message.


The shaving cream ad tells you to Buy War Bonds. The campaign ad is wants to "Sweep the Communists out of our Government. Notice the wording in these ads. Berma-Shave is partnering with the government to sell bonds. Dewey and Warren (while misguided) are referring to the Government as "our Government". There was another ad with famous "Loose lips sink ships" saying on it. It seams that the "Government" was trying to get everyone to work towards the same goal.

I really did not think much of this to I rode home on the Subway and was in a car were all the ads were the same. They were all from Keep it going, NYC. It looks like an organization that exists only to tell New Yorkers how good the public school are.
The ads mention rates of improvement, growth in number of classrooms. Lots of statistics. What it the point?

When did the government change from "lets all work together to make this a better country" ad campaign to the self-promotion business?


I wonder why there has to be a multi-million ad campaign to tell me how good public schools are?

Don't get me started on how spastics can be manipulated. But why?

Any answers....

keep it going nyc
Originally uploaded by gguillaumee

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