The ARC Convention at Wyndham - Day 1 of 2

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Morning! Just us. We’re not sure when you’ll see this entry. We’re at the hotel and having trouble with the Internet connections and the phone, even though we’ve been down to the desk and had the "engineer" up twice ... I guess we’ll just have to wait. His statement on the situation is only that, "Our phones have been screwy..." Like, ok ... thanks. Hmm, maybe I better go put in my room service request by hand? I understand they don’t start delivering for another 1 ½. What is up with that!?? Are we island people??

Umm, sorry Internet depravation ... getting to me already. Worst service I’ve ever seen at a hotel and this is a 12 story Wyndham. I would have expected better. *Whimpering* Now half my coffee has poured out onto the counter! Ok, breath here, relax...

Hmm, just turned out the light so I could get back to it really is at least a nice view from here. Beautiful view ... Kinda a lagoon thing happening out there.  We’re on the 10th floor. Shoot, even though AOL is closed down ... it keeps wanting to start. Kind of a reminder what isn’t working. There’s no cancel request ability any more? Breathe, breathe ...

It’ll be ok. Least we got our word processor, right? It’ll be ok...

Shoot, just shut down ... it’s sorta like falling asleep. Well it’s actually like that, but a little more. When things get too much for us, our minds just disconnect. Eh, it’s better now, the sun has risen, and our coffee and muffins are on their way! All better ...

Well, have to admit ... yesterday was a pretty good day! We made it to the hotel with time to spare. We weren’t able to check in right away, of course, but the bell person secured our suitcase for us. It was a very, very large atrium so it took a few minutes to find where everything was. There seems to be a lack of signs around here *giggle*.

One of the nice things The ARC did was to give everyone very nice cloth, zippered tote bags. This was appreciated cuz, well ... there is always stuff to be carrying at this kind of thing. It made the process easier.

The first session I had wanted to attend was cancelled, but we made due and picked up information on legal/financial processes of special trusts and stuff. It was a breakout meeting and supplemented having heard another "futures" talk like this within the last 6 months. We had had a speaker come to our Center for one of the parent’s meetings.

The next meeting though was very, very good. They had as a keynote speaker the author of a book called, "Riding the Bus with MySister." She gave a very good presentation of her sister, herself and the families dynamics. After the session was over we bought the book and had it signed. Umm, well sorta. We actually had her sign the book to Sr. Tess. We figured that it was her that deserved credit for sending us here and that she should get something out of it too.

Hmm, just reading a few pages now. The style matches how the woman spoke yesterday. She is a college professor, so had some pretty mixed feelings at first of riding the busses with her sister (who has mental retardation). From what I understand the sister rides like 12 buses a day *Giggle*.

The next woman was the luncheon speaker. We weren’t sure of her as much and it WAS after lunch, which can make a person sleepy. Her presentation was on, "Thinking Outside the Box." You know ... I tried last night, but for the life of me I couldn’t remember one thing that this lady said. She had a point to be making, I think ... just she was one of those kind of woman who where their heart out on the sleeve.

I think she was like complaining about the state of things for people with MR and she was like pleading and crying the whole time, but the thing was ... that she put herself as if she was the only one who really know the devastations of MR. Hate that when it happens. Everyone in the room had experiences and we didn’t all cry for those "poor things." This is, in fact, a very negative aspect ... I think its called, pity.

Especially, after having come from the previous speaker. I’m sure that Beth the sister who rode buses felt she had the most special and wonderful lives imaginable. She was doing what she wanted. You know, living out her dream.  Actually, from what we learned from the author, Rosie O'Donnel had picked up the bus story and things are all set for her to make it a movie with her in the lead role of Beth.  Pretty Cool!

The next meeting was eh, so-so. The bad part was that the guy was a salesman and I had the feeling the whole time was basically a sales pitch kinda thing. He did have an interesting job. He was into Research and Development. He travels around the country adapting technology stuff for individuals who are severely retarded. It was kinda interesting to see what was happening out there in the field.

The last presentation was another "breakout" session. This is the main one, we’d focused our attention on prior to coming. As it turns out, and what we hadn’t known was that the key author was doing the presentation himself. I was soooo majorly impressed. He was another professor and we’d known of his work. His name is Dr. James Thompson and included on his project were very, very big authors in the field including: Schalock, Wehmeyer, Hughes and Bryant. We’re talking the top of the top!!

Their work, particularly with Dr. Thompson in the lead was to create a very happening, "Supports Intensity Scale, SIS." It is an interview form asked of someone who knows very well the individual with developmental disabilities. It is very highly supported/featured by the AAMR and is brand new with a 2004 publication date. I had already put the SIS on our list of "must have items."

In general, it asks key questions in regard to home living activities, community living activities, lifelong learning activities, employment activities, health/safety activities, social activities and supplemental protection and advocacy activities. It also includes medical and behavioral support needs. After you finish scoring it, (very easy to do), you gain a Support Needs Profile, which might help to prioritize which needs would need to be cared for first.

It’s just that "support" is a very, very big thing and is in the forefront of people’s interest now in the field. It’s kind of a new way to be thinking about services. I think its been a big deal for a couple of years really. One of the authors mentioned above (Schalock) worked with about 10 other doctorate type people to redefine the definition of mental retardation. That book is also on our list, but came out in 2002. Hehe ... this will teach me to better keep up with our reading!

Our friend called up within moments after getting up to our room at the end of the day and he took us out to dinner at an Italian restaurant. It gave us a chance to talk about the going ons of the day and catch up with his schedule. His main job is as a director of another facility I’d originally worked at, so I have a pretty good sense of the place. They are going through a CARF inspection this week. Very good conversation! AND, there were a couple of Bloody Mary’s involved!

So, that’s pretty much it so far. Today, we will go to a couple of sessions that are legislatively based. One is the ARC’s campaign here in Illinois that addresses funding by the executive director of the ARC here in Illinois. There will be a meeting on inclusion and another meeting on self determination. Then the last meeting of the day will be on advocacy and the legislative process by a UIC professor here in Chicago. Looking very forward to the day actually!

There won’t need to be done much here to be checking out. There is registration at 8 am (breakfast type stuff). This is about a half hour from now. We might wait a bit, plus do the check out stuff. Then the first meeting starts at 9 am. There is a nice ½ hour break between most stuff, so gives you time to really have a nice break. Some of the meetings have been going long.

Then we’ll have one more last meeting of the day, this one with Dr. M. Hmm, wonder what we’ll talk about?! :) Thinking we’re feeling all higgely squishely good!