Going to Washington

[Crystal11]

Hello everyone-
I will be going to Washington again this month for Deafblind Young Adults in Action which is a program for advocacy in the deafblind field in which we speak with members of Congress, House Representatives, Senators, Legislators as well as White House staff who work on Education.
We will have lunch with the FCC and discuss many things I'm sure- still have to read the agenda!
This year I will be teaching along with two other deafblind friends that I met on our trip last year, to a new group of deafblind young adults.

We did see the President in his Oval Office where we met, introduced ourselves, shared our policy issue and why its important and what we would like to see happen.
President Obama was telling me that he wishes his dog was like mine, my Umbro LOL. we took formal and informal pictures in his office and it was an awesome experience for us all.
Since Helen Keller, we are the only group to meet a President that are deafblind. Helen Keller was the last deafblind person to have done this until our group last year. Secrete service took us around on a personal, modified tour on the White House as well as floors and rooms that most people don't see.
While there in the foyer- my interpreter told me there was a piano off to the side of the foyer closest to the colored rooms (blue, yellow, green, red). Everyone knew I am a composer of 20 years and that I write for piano and many other stringed instrument.
Secret service told me that I could go over to it and play it. I told them that I couldn't. I don't want to do something wrong or get in trouble some how. When you're in this type situation, you are paranoid of something going wrong! I mean Secret Service is there, and everything! LOL
Anyway- I did play a part of my song I was working on and boy.. my hearing aids picked up the most wonderful sounds! That piano is a one of a kind Steinway that was especially made for the White House. It looked like a harpsichord but was setting on three golden eagles and had beautiful details on it.
After playing is, secret service lady told me:
"Stevie Wonder plays this piano when he comes by." I freaked out in my mind and my interpreters and friend could not believe it.
It was...awesome- something I will never forget.

My doggie Umbro was loved on by President Obama and he probably loved that hehehehe- Umbro was working at the time (guide dog) and President Obama went to pet him. now usually in public, while he is working, I don't allow people to pet him. It distracts him from guiding me and he might start looking for attention from the public instead of guiding me properly..
But seriously, do you think I would say "Please don't pet my dog. He is working. Thank you." Uh...no. LOL
Umbro was well behaved and didn't seem distracted at all. He was still serious like usual when the harness goes on.

Oh.. my it was something else, a once in a lifetime event. We spoke with many many people and boy its stressful sitting in the state representative or house rep. discussing your policy topic and why its important to consider supporting it further.. But again this year, we will be doing this again and informing even more people about these policies.
Education is so important and deafblindness is something most don't know about- most people think "Oh, totally deaf and blind like Helen Keller." Now this is understandable but I think more education is needed just like Epilepsy education.
most people think "Oh Epilepsy, the bad seizures." "People fall down and act crazy and they might die." When there are so many other types that effect people differently.

Ok, sorry for the long post here- just thought I would tell everyone what's up in the other part of my life LOL
I will try and check in on posts but i will gone 10 days I think..
But I'm sure I will have more stories.

Oh.. when talking with my instructor, I mentioned that I worry about my seizures. And since I'm away from my friend and Twin sis, only people that know me, understand I have seizures, complex partial ones. I try to hide auras or the beginning f seizures but it never works. but at the time I don't realize this.
But traveling can be stressful, it can leave you tired and I know for one things that the busy schedule will keep me from sleeping the best I can.
I try my best to eat properly, keep meds on schedule and don't over do things.
I did have a seizure while up there last year- it frighted those who had no idea about my specific type of seizure or Epilepsy at all.
I hope nothing happens at all while I'm gone. I would be upset like I was last time.
I am doing better with new med change- so, so far so good.

Everyone, take care and be safe.
Crystal and her guide Umbro

[Nakamova]

Have a great trip Crystal! I hope all goes well, and you bring back some more great stories.

[Endless]

Wow, Crystal!

What an amazing experience. And you were able to do so much good for the deaf and blind community.

Have a great trip!

[Crystal11]

It will be fun but very very busy like you can't believe! we will be traveling all over D.C. talking to lots of people about deafblindness and the policies we are working on. We will be teaching some as well and doing research with several colleges in the study.
I will write about my travels again and share with you all about it.
Sorry my posts are long LOL I will work on that too.

Everyone take care
I will miss CWE but maybe I can sneak in some time on a computer there- if they have is accessible. They better! Its the only university for the deaf in the US LOL

Everyone take care and be safe
Crystal and her guide Umbro