Saturday, May 5, 2018

2017 SATB2 Conference Experience

In August of 2017, we held our first ever international SATB2 Associated Syndrome conference in Little Rock, Arkansas, USA. Here is a quick recap of what it was like for us!



Just Chelsea and I flew out for the conference. My husband and son stayed home, so we made it a Mommy/ daughter trip this time. I am really glad that we didn't bring my son- he is very attention seeking. 

1. The Hotel
We had a group deal and most of us stayed at the Homewood Suites hotel. Chelsea and I shared a room with another SATB2 mom and daughter.


The rooms were pretty nice, with a little kitchen, living room area, 2 big beds, and one tiny bathroom that I wished was bigger. Helping a SAS kid go potty when you feel cramped in a tiny bathroom is no fun.


There was a breakfast each morning. It was filling, but I wasn't dazzled by the quality of the food. Chelsea loved it though! And they had a pool that ALL the SAS kids wanted to be at every night, so after dinner, most families would congregate at the pool and talk and swim. 


2. The Welcome Night
When everyone first got to the hospital, we had goody bags and shirts for the families, and a dinner.

There was a quick welcome speech by Dr. Z and a couple of the moms who headed up the whole conference planning.

We all talked and shared stories, and it was amazing to see how similar the kids were! Chelsea had several little friends that were about her same age, and they followed each other everywhere!




3. The Clinic
I did a pretty detailed blog of the clinic HERE, but to sum up- several kids did a clinic to see the SATB2 specialists- ENT, speech therapist, dental team, genetics, and for the researchers to get some data on the kids. 


4. The Conference Lectures
In the mornings, there were some parents that gave several presentations that were amazing! It was so nice to hear people talk about topics when you know that they have been through the same exact things as you! There was a presentation that I particularly liked on keeping strong relationships in your family with a SATB2 kid. 


In the afternoons, there were more professional presentations about things like SAS research, AAC options, and work groups. Dr. Z gave an awesome presentation all about SATB2 Associated Syndrome.


5. Afternoon Child Care
During the afternoon presentations, the kids had the option of being watched by some hospital staff while the parents attended the lectures. It was super nice to have a safe, fun place to leave Chelsea while I listened to speakers.


Chelsea loved it because she got to watch Finding Nemo, and there were a bunch of toys to play with. The helpers watching the kids showered them with attention, so Chelsea was very pleased.

6. The Raffle
There were several companies that donated items to the conference to be raffled off. There were things including weighted vests, special needs strollers, G tube formula, a fine motor tools basket, and some gift cards. 


People bought tickets and placed them in containers in front of the desired item, and we drew for winners at the end of the closing dinner. The thing I learned was that I had so many tickets, I needed to write my name on the back of each ticket I put into a drawing, because there was NO WAY I would ever be able to keep track of all those numbers!


7. Camp Laughter
This was far and away Chelsea's favorite part! Most of the families were gone, but a few of us stayed for the hospital's "Camp Laughter" which was a day program with a petting zoo, crafts, fishing, talent show, and lots of fun activities. 






No comments:

Post a Comment