International Fragile X Conference, Part Three

Friday morning, we went to the General Session, which was the presentation of the film Including Samuel by Dan Habib. It talked about getting his son Samuel included in his school, and the impact Samuel has on their lives. Samuel has Cerebral Palsy. It was a touching film, and I was glad to have the chance to see it.

After the general session, I headed off to a session called The Establishment of Best Practice Guidelines for the Assessment of Individuals with FXS. A group of professionals are trying to come up with guidelines for doctors, therapists and schools to learn which are the best assessments for people with Fragile X, and how that varies depending on the purpose of the evaluation. I am grateful they are doing this as anyone with a child with Fragile X knows that our kids do not test well.

After this came a session called Gaining Independence: What You Need To Know. I wasn't sure what this would be about, but since I want my boys to be as independent as possible, I thought I'd check it out. It was a panel of four young adults with Fragile X syndrome. I was truly inspired by these men and woman. They had all been employed, two of them (maybe three, I forget) are drivers, two went to college. Marcia Braden was the moderator, and she knew exactly what to say to these guys to put them at ease. I was very impressed.

At noon there was a luncheon. We were served a grilled chicken salad and cheesecake. It was okay, but not the best option for a lot of picky eaters. There were several speakers and awards given. I felt bad for Don Bailey because people talked over him the whole time. I was irritated with people for their rudeness. Dr. Randi Hagerman received a Lifetime Achievement Award for her dedication to fragile x research. There was a guy who I'd guess to be about ten with Fragile X who was obviously overstimulated by being in the room. He paced back and forth with his baggie of pretzels and occasionally let out a wail or screech. Of course, we all understood, and most people didn't mind a bit. That is, except for a woman sitting at my table. She kept giving him dirty looks and eventually got up and said something to the boy's mother. The mother didn't really respond, but a minute later, she sent another boy(who I assume was the fraggle's brother) out and he returned a little later with a Gameboy or something like it. Unfortunately, it didn't help, so when they were finished eating, the boys left together. I don't know what the woman said to his mother, but it seemed like it was a criticism. Later, Kelly and I were going up to our room and saw the boy and his dad heading toward their room as well. Kelly told the dad that we had thoroughly enjoyed his boy as he reminded us of our own kids. We didn't want him thinking we shared the sentiment of the woman at our table.

After the luncheon, Eric and I went to the Sleep Disorder session with Dr. Jeremy Turk. We really like Dr. Turk. He is English, and has a very settling voice. Unfortunately, it made me drowsy, and so I snuck out early to take a nap. At five o'clock, I met Eric after his session and my brother in law Tony was with him. We headed back to the room to drop off our binders and bags, and to pick up Kelly, who was still napping. We went back downstairs to the poster reception. There I saw

Erika, Oma, and Punkin. We chatted for awhile, but they went to get some dinner and to go swimming.
Eric and Tony hit it off with the bartender. Anywhere Kelly and I went, we knew where to find our men. Hanging out with the Toriano, the bartender. They originally went to ask him about how to get to the St. Louis Steakhouse. He gave them directions, and confirmed that it is good. I had read online that it was the best steakhouse in St. Louis.

So, after we'd sufficiently mingled, we left for the steakhouse. We had talked about changing into dress clothes, but Toriano assured us that what we were wearing was fine. We had to take the Metro train to a Metro bus. We had no idea where we were going. And Eric announced it to everyone on the bus. They dropped us off near the restaurant. We weren't even sure it was the right place because it just had a sign that said, "Best Steak House".
And, it didn't look like the fancy steakhouse I was expecting. It looked rather much like a cafeteria. We said, "what the heck, let's give it a try." and headed in. Kelly and I went to the restroom while Eric waited for us. When we got back he instructed us what we had to do. If you've never had the pleasure of eating there, imagine "the soup Nazi" on Seinfeld. The cook would yell, "Next!" and you would have to holler what kind of steak you wanted and how you wanted it cooked. I went first, and so I yelled, "Sirloin, Medium!" and felt rather proud of myself for not messing it up. Kelly was having a conversation with the guy behind us in line, and he asked how we got there. She told him we took the city bus, to which he replied, "I know you all ain't right!" He said, "Nah, most people in this city are nice. Some might shoot you, but most of us are nice." Oh dear. Neither Kelly nor I got salads, which came with the meal. So the cook told the tray prep guy to give us an extra piece of Texas toast. Well, he accidentally gave Eric an extra piece as well, but when he realized Eric had gotten a salad, he took the extra piece of toast back. We thought it seemed like something the "soup nazi" would do and so we found it pretty amusing. The steaks were very good, and we made it back to the hotel without getting shot by one of the not-so-nice St. Louis people our friend told us about.

We headed to Maggie O'Briens for drinks, and called our friends Frank and Isabelle to come join us. Frank bought us all a shot called a Melon Ball. He wanted us to have a Golf Cart (I think), but they bartender didn't know what that was. So, we limited ourselves to one shot each. We left Maggie O'Briens around midnight, and went back to our rooms. I didn't think I was drunk, but when we got back to the room, all four of us were giggling like crazy. Especially when we tried to go to sleep and be quiet for our neighbors. Eric told Tony he was "giggling like a school girl" and I thought he said, "Giggling like a girl squirrel" lol.

Anyway, we eventually fell asleep and the neighbors didn't even have to call the front desk to complain.