Monday, July 19, 2010

In Session

We were at the convention "in session" for three days. Each day consisted of a morning keynote speaker then three information sessions (with multiple sessions to choose from for each time slot). Day One, we did everything. This is what the day consisted of:

Get everyone up, dressed, and to the continental breakfast. Drop Jamie off at the bus area for his school-age day camp. Drop Clare and Simon off at a different room for the preschool day camp, Shawn drop Violet off at another room for the baby camp (with me staying well out of the way so Violet would fuss just a teeny bit instead of a WHOLE LOT). Grab a second cup of coffee before securing seats for the keynote speaker. After the speaker, 15-minute break (with the familiar ladies room line that lasts the entire break), then off to Session One. Mad dash to the childcare rooms to pick up the three younger ones (Jamie stayed at the day camp off site and joined us again before dinner). Find somewhere to eat lunch, order lunch, coax the children to eat quickly because we only had an hour total to pick them up, eat lunch, and drop them back off. Which is not a lot of time in a big hotel with hundreds of other people trying to do the same thing (poor planning, convention people)! This time, Shawn and I divide and conquer - I bring Simon and Clare back to their room, Shawn is on Violet-duty. (More fussing from Violet than in the morning, but she still goes into childcare fairly well for a 18-month old who has never been in daycare, with a "strange" babysitter only once, and usually won't even hang out with the grandparents without looking around for mom). Arrive at Session Two a little late because the session starts at 1 pm, but the childcare rooms do not reopen until 1 pm (again poor planning, convention-people!). Session Two, 15-minute break, Session Three. Keynote speakers are incredible (made me cry two mornings in a row, dang it!). Sessions are chock full of good information, but now I am on brain overload - mentally-, emotionally-, and physically-exhausted. After Session Three, breathe a big sigh of relief, have about 10 minutes to do nothing, then it's pick-up time for all four children. Four children are extremely excited, wound-up, overtired, and fussy (all at the same time!) about their days. Enjoy about 30 minutes together before it's time to get ready for the evening event (which everyone is eager for because it not only includes horses, carousel, zoo, train ride, dinner, and banjo music, but also Auntie Erin!!), but everyone is also very tired and a little high-strung.

When Day Two dawned, I was already done. The sessions were so helpful and informative that I hated to miss any, but by the afternoon of Day Two, I needed a break. I went with Shawn to the keynote speaker and sessions one and two, but skipped the third session. I went back to the hotel room and took a nap (Shawn went on to his "dads only" session and the kids were all still at camp). By Day Three, Shawn was done, too. Since it was a Saturday, we had already planned months ago to only put Violet in childcare that day, and Erin would take the other three for the day. Erin picked them up for the Science Museum, but we did not put Violet in childcare. She had successfully lasted the first two days, but I think Violet was done with the whole childcare scene and was extremely fussy and clingy. Shawn and I agreed to skip all sessions on Day Three. Instead, we took Violet with us to the Vatican Splendors exhibit at the Missouri History Museum. Incredible! I am so glad we did this. The exhibit showcased art and artifacts from the Vatican's collection. Many pieces have never been outside the Vatican before. We saw amazing items, such as relics from Sts. Peter and Paul (actual pieces of their bones), Michelangelo's art and tools used in work on the Sistene Chapel, Pope John Paul II's chalice and patten, and the 16th century red cope worn by St. Charles Borromeo. We spent two peaceful hours at the exhibit (Violet cooperated by taking a nap in the stroller during the majority of this), ate lunch at a great little Mexican place, then found Gooey Louie's, a St. Louis bakery devoted solely to gooey butter cake. If you know me and my family well, you know that gooey butter cake is a staple in our diet! We were able to recharge during the day, then in the evening, Erin generously babysat in our hotel room (with pizza and a movie), and Shawn and I enjoyed the ending convention banquet minus children.

The keynote speakers we heard were Dr. Ray Guarendi (parenting "expert" - although he scoffs at that title - and father of ten children) and Gary Guller, the first man to climb Mt. Everest with only one arm. Not only did he reach the summit, he led an expedition of the largest ever cross-disability group to reach Mt. Everest Base Camp. Both men were exceptional speakers. Dr Ray had lots of good advice when it comes to parenting and discipline, but Gary Guller made me realize that we can't give up on our dreams no matter what life throws our way. That our kids CAN do anything, and it's not up to us or anyone else to tell them they cannot. Gary Guller was beyond amazing when it comes to being inspirational.

As I stated, the convention was overwhelming, but it was worth the trip. I still have not re-read and digested my notes and the binder of slides from the sessions we attended. I have a list of potential "issues" to look into and check off my list. We gained some insight into what's going on in Clare's brain, learned new techniques to help her cope with stress and anxiety, discussed ideas for a sensory diet, and added goals to her IEP, to name a few. We are very glad we made the trip to St. Louis (both in visiting family and for the Williams Syndrome Convention), but it always sweet to be home again!

Saturday, July 17, 2010

Meet Me in St. Louis

We are back home after a two-week road trip. (We called it a vacation, but it was only semi-relaxing!) Every two years, the Williams Syndrome Association holds a national convention, and this summer it was in St. Louis. We had not attended a convention yet (Clare was too sick in 2006, and 2008 was held in California, which was too far away for us), so when we heard that the 2010 convention was to be in St. Louis, we knew we had to go. My dad is from St. Louis, and his family still lives out there, plus my older sister is currently living in St. Louis (an older sister who my children love dearly and who they have not seen since Christmas). Plane tickets, rental cars, lugging gear around was too much to handle, so a road trip it was! We journeyed in three legs both ways - our home to my younger sister's in Philadelphia (where we spent the Fourth of July), then Philly to West Virginia (where my grandparents live), then on to St. Louis. On the way home, we did it in reverse! They were six long days of driving (about 50 hours total spent in the car), but the kids did fairly well! They are little troopers, that's for sure.

So the convention... many people told us that once you attend a convention, you will never miss one again. Frankly, I am not sure I agree with that! There were many wonderful things about the convention, but it was also so overwhelming. I am not sure what I expected exactly, but this little story is a good illustration about how it was way more than I could have imagined. Our third day of driving was the worst. Everyone was sick of being in the car. The last two hours of the drive, Violet was so upset about everything, that she was making herself sick. We ended up pulling over and switching the seating arrangement. Jamie and Clare sit in the same type of car seat and so do Simon and Violet, so we can do all kinds of seating arrangements without moving car seats. Violet would only calm down if I rubbed her head, so I squeezed in the rear row between Clare and Violet. When we finally pulled up at the Hilton in St. Louis, that's where I was - wedged in the back between my girls. Shawn pulled up to the valet, and we all waited while he went in to register (you quickly learn at hotels NOT to unload all the kids until you're sure you're staying put). As we waited, I saw this little face pressed against the glass from inside the hotel. It was a boy, probably a little older than Clare, who without a doubt had Williams syndrome. After a l-o-o-o-ng two hours, seeing that smiling, friendly, oh-so-familiar face doing something I have seen Clare do so many times instantly brought a smile to my face. I thought, that's so cool - there's another child with WS inside that hotel! When Shawn came back out, I eagerly told him about the boy. His words to me were simple: "Tree, you haven't seen anything yet." I asked him what he meant, and he said, just wait.

After unloading the children, the luggage, and the gear, we entered the hotel lobby. And Shawn was right. I hadn't seen anything yet. The lobby was full of faces, just like the one I saw pressed up against the glass. Babies, kids, teenagers, adults - all with Williams syndrome. They were everywhere. We have attended numerous WS get-togethers, but never with this size crowd. It was unbelievable. It was also quite overwhelming. It was in-your-face Williams syndrome. And I am not sure I was ready for that.

(to be continued)