Back from the Conference

What an amazing time we had at the Fragile X conference in St. Louis. Thank you all for your prayers for us. We left early early early last Wednesday and I don't think Momma got more then 2 hours of sleep that night. I have never left my little people for 4 nights and 5 days. I knew it was for the right cause and we had to go, but it's still hard to leave so anxiety got the best of me. We left them in wonderful care with Gran Gran and Papa. I think I let go of everything by noon on Wednesday when we checked into our hotel and our lovely room was pool side. Not that we ever had time to go to the pool, but just to know your pool side was sweet enough for me. The kids did amazing and so did Gran Gran and Papa. They even took a field trip...to Wegmans of course!

We kicked off immediately with sessions upon arrival. Our first was within an hour of check in and this continued each day from 8-5PM thru Saturday. Over the course of the conference, hubby and I went to a total of 35 different sessions on all the various components of Fragile X. Everything from genetics, school immersion, school transitions, special needs school laws, Hyperarousal/OT, Speech therapy, Behavior therapy, Financial planning, Dealing with family, New treatments, Sensory Diets, Testing Guidelines, Sibling Strategies, Visual Strategies, Pharmacology, Music Intervention...to name a few. As we mentioned before, this was a conference of all the top doctors, researchers and therapists who specialize specifically in Fragile X. A rarity, to say the least! We met dozens of families from all over the country. Only one other family, who we already had met was represented from Northern Virginia but we're still scouting!

So after these wonderful, intense, emotional and extremely educational sessions we decided to take advantage of this downtime for some date nights. One night we went to a Cardinals game (oops forgot my camera this night) but we had a blast. It felt like the old days for sure! The next night we went out to dinner and then to visit the infamous St. Louis Arch.

On the last night they had a Gala, hence our attire, which was a great way to end the conference. They announced the next conference in 2010 will take place in Detroit - woo hoo - Motown city. They also had a raffle and silent auction where my sneaky and loving hubby won some jewelry for me and Disneyworld passes for our family. There were a good number of middle and high schoolers with Fragile X at the conference. It was comforting to see them and how they interact with adults. We definitely saw a wide spectrum of kids but it helped us understand our future just a tiny tiny bit more.

Our flight home was great because hubby begged the Delta desk for an earlier flight so we could see the kids before they went to bed. It was so wonderful and overwhelming to be at home. The millions of videos and sessions we had watched and heard over the course of our past few days was actually very real, right in our living room. Little man's mannerisms can sometimes be translated as, oh he's still a baby. But this conference made everything more clear for us and helped us realize that he's not going to grow out of them and we'll see these over the course of his life. So re-entry was a bit of a shock for both of us, but now we're equipped with more information then we ever imagined and hitting the ground running.

OH and hooray - we signed our IEP yesterday morning! Little man starts school Tuesday, September 4th. And NO he's absolutely not riding the bus. His Momma will drive him until he begs and pleads her for it!