HOW WAS BOSTON

[Jackie]

Anyone home yet?

Jackie

[hannahph]

I got home Sunday Night. The convention was ok.I met with lots of Downsyn friends but didn't see anyone from here, bummer.The convention itself was ok, accessabilty was a nightmare though.I didn't get a ton out of the convention itself but I am still glad I went.

[Jackie]

I wondered how well it would go over spread between so many venues........I liked them best when they were smaller and entirely contained in a conf hotel.

Jackie

[advocate4myself]

I wondered about that. I remember the one in Washington D.C. and the other one that was in Kansas a long time ago. It was in one hotel except for the teenager and adult conference. It wasn't that bad of a walk......Debbie

[CC]

Hmmm yea who here from UNO went?

I know MB was going and Jessie I think and Allisa OMG you are right there so I assume you went.

Would love to hear if any new stuff was shared at the conference.

Please post up when you can

CC

[laurasmom]

The events were in 3 venues. The Youth and Adult was in the Seaport Hotel, the main hotel. The sib stuff was at the Renaissance Hotel. Some of the individual sessions were at the Seaport, the other convention stuff was at the Seaport World Trade Center, which was about a 3 minute walk from the Seaport. The accessibility issues, as far as I could tell, and according to the people I talked to, were for families with strollers, or wheelchairs/scooters, as the elevators for the Trade Center were few, only 2 that I saw for the entire area. Also, the World Trade Center was a little confusing. For example - registration and exhibit hall on mezzanine level, some sessions were also on mezzanine level. But you couldn't go from the exhibit hall mezzanine level straight to the sessions on the mezzanine level, you had to go up to plaza level, walk about 50 feet to another elevator, then back down to mezzanine level for the session. Confusing at first. For me, the walking wasn't bad, and I have one remaining bad knee, the walking didn't aggravate it at all.

I didn't get to my precon I had registered for. Our plane arrived in Boston at 12:30 Thursday night, arrived at the hotel about 1 am, then I had 3 hungry souls with me. Didn't get to bed until about 3 am. Room Service food was delicious.......Mike said the hamburger was great, the girls raved about the cookies, and I can't say enough about the sweet potato fries. But, I digress....

The exhibit hall was nice, they set up the play area in the center again for the younger kids, an excellent idea. I wish more of the self advocates had booths set up for their artwork, crafts, etc., like in Atlanta. I was only able to find 2 booths. The Blue Sky movie people had a booth set up, and we got to meet Ashley Wolfe, the young lady with DS that stars in the movie. She was wonderful! Laura really enjoyed meeting her. There were more exhibitors for home living situations than I have seen in past years, such as Rainbow Acres in Arizona, and The Stewart Home in Kentucky. I can see where that is an attractive option for many families.

I attended sessions by Dr. Chiccione and Dr. McGuire, on mental and physical wellness in adults. Very interesting. Dr. Chiccione talked about the slower metabolism in adults, burning on the average of about 200-300 calories less per day than the average adult. He stressed the increased activity, rather than cutting calories (assuming a person is eating a nutritious, well balanced diet), for maintaining a healthy weight. He explained that cutting calories in most situations, cuts out necessary nutrients. He also stressed the need for adequate hydration, of course primarily with water. He talked about the hydration issues related to 2 areas, helping to relieve constipation, and also because adults with DS tend to run BP's and heart rates on the low end of normal, and that adequate hydration helps to maintain adequate blood pressure.

Dr. McGuire talked about appropriate interpretation of sudden behavior changes in our kids and adults. He stated that any sudden behavior change should be seen as an attempt to communicate a problem that had cropped up. He gave several examples such as a young man with DS that was being teased and bullied at work. The young man was unsure how to verbalize what was happening, so his behavior changed. He also discussed self talk, also an interesting subject. He talked about the function of self talk, and how people without DS do the same thing, we can just do it silently, in our minds. People with DS have the need to do it out loud. He talked about encouraging self talk in appropriate venues, such as bedrooms, in cars, bathrooms (and not in public bathrooms in the stalls). He also suggested cell phones and bluetooth devices. He said there was no need to connect the cell phones to a service, just have the person with DS have a cell phone, and when the need for self talk presents itself, put the phone to their ear. He says it serves many purposes, relieves the need to express, and alleviates the looks from the general population, as everyone has a cell phone plastered to their ear, or a bluetooth headset on. I thought that was a great idea. When I picked up Laura at the self advocates session, I paid close attention and did see a couple of adults with DS, with their cell phones at their ears, but the cell phones weren't opened up for use. To the average person, it wouldn't be noticeable, but I was looking for it.

I attended Terri Couewehen's (spelling not quite right), talk on sexuality. Can't say it was the best. She kept referring us to her book, saying "it's in my book" or "I go into detail in my book", about most of her slides and any questions. So, I guess I will have to buy her book.

I attended 2 sessions by self advocates and their parents, both excellent, and something I needed to see and hear, as I feel I have been running on empty lately.

We didn't attend the banquet, and I couldn't get the girls to go to the dance. We ended up swimming in the pool instead.

Kelly had a great time at the sibs conference. Laura really enjoyed the Youth and Adult conference, made new friends and just generally enjoyed herself. The down side was that she didn't get to do her talent at the talent show because they ran out of time. She was very disappointed.

I looked all over for Kathryn Soper, and could not find her. I was unable to get any copies of her new booklet, and I am very disappointed about that. I even asked a couple of the convention people, and they didn't know either.

All in all I enjoyed it. The weather was gorgeous, the city was fun. We spent time Sunday sightseeing, saw Paul Revere's house, the North Church, walked part of the Freedom Trail. Had a delicious lobster roll Sunday evening. The hotel was nice, staff was very friendly. One wonderful thing about the Seaport Hotel is that it is a service inclusive hotel. All gratuities are included, no tipping. Mike even tried to tip the bellman, and he politely refused. Very nice.

I am very glad we went this year. Next year's conference is in Sacramento. We won't be able to go. Plane tickets are already about $800-$900 a person from our closest airport, and it would take way too long for us to drive.

I saw several moms from the sharing sessions from the last 2 years. Seems like in our age group, moms of 15-19 year olds, promoting friendships is the big issue. I always enjoy the sharing sessions, I could stay in one of those for a whole day, rather than a couple of hours, time always goes too fast.

Then Monday morning came too early. We had to be up at 3 am for a 5:30 flight. Poor Mike found out the day we left for Boston that he had to go to New York on business Monday. So when we were flying home, he was renting a car and driving to Ticonderoga, NY. He will finally make it home Wednesday. The girls and I landed in Myrtle Beach at about 7:30 am, and were home a little after 8am. We did nothing for the rest of the day, just napped, took it easy, and ordered pizza for dinner. The girls are disappointed we aren't going to convention next year, and have made us promise if the 2010 convention is closer, that we will go.

Sharon

[Emilysmom]

Sharon,
Thank you so much!! The pre-conference by Drs Chiccione and McGuire is the one I would have attended, so I was glad to know a bit of what I missed in that one. I do have their book.
I went to the sexuality session you mentioned last year, and remember the speaker saying frequently "I go into that in more detail in my book". I still need to get that book!
Glad you had a good time.
Susan

[Googsmom aka Jennifer]

Oh Sharon, sounds like you had a wonderful time. Next year Sacramento. I thought it might be a roumor but sence you say so, it has to be true!!! NOW i'm really excited. I wanna see for myself what all the comotion is about and fun times Do you know maybe where. I'm thinking The Sac. Convention Center. I just can't find it posted anywhere yet but I better start saving my $$$ I'm thankful you took the time to write about your trip instead of just pic's. Much more informative Almost made be a little teary-eye'd.

[laurasmom]

They haven't posted the hotel site for next year yet, and didn't mention it at the conference. If I were interested in going, I would pay very close attention to the NDSC website, checking almost daily. There hasn't been a convention on the west coast in several years, and I have a feeling hotel rooms will go very, very quickly.

Sharon

[coolmommy99]

I don't post on here often, but I was very glad to hear about next year's conference being in Sacramento. That's my hometown and we have the majority of our family still living there. We're planning on taking a long family vacation (read: driving) to CA and back. I've never been to a conference before and I think this might be the only way I can convince DH to go to one, lol. I hope to see some Uno folks there!

[CC]

THANKS Sharon for the GREAT run down

"There were more exhibitors for home living situations than I have seen in past years, such as Rainbow Acres in Arizona, and The Stewart Home in Kentucky. I can see where that is an attractive option for many families."

Thanks for sharing that part I am interested to check them out and the cost. Up this way there is a GREAT living situation ~ www.pathfindervillage.org/

But YIKES the cost is like having a very high yearly college tuition for life KWIM

Anywho THANKS for sharing, sounds like you had a good time and Man do I LOVE Boston

CC ~

[Kristin]

I'm from Sacramento, too. My parents still live there, so as long as nothing catastrophic happens, I think I'll get to go...free housing and babysitting, too!