What I did this weekend.

Eric and I left on Friday morning for a one-day Fragile X behavior conference in St. Louis, Missouri.  The boys were at ARC camp and we had made arrangements for their care this weekend. 

We got to the hotel in the afternoon.  We checked in, unloaded our stuff and headed to the lounge for a drink.   We asked the bartender for some recommendations.  She suggested we go to The Hill, an Italian-American neighborhood, which has lots of good Italian food.  After we got lost and ended up in some totally other area, we stopped in at a Domino's Pizza and got directions to The Hill and recommendations for where to eat.  We went to Favazza's Restaurant.  It was so good.  I got lasagna and it was delicious.  But very, very hot. 

Anyway, the next morning, we went to the hotel restaurant to have breakfast then headed to the where the conference was being held.  We signed in and went into the conference area.  Cindi Rogers (one of the presenters) saw us and came over to say hi.  She is so sweet. 

We sat down and listened to the keynote speaker, Marcia Braden, an expert in the area of Fragile X and behavior.  She started out the day by giving an overview of fragile X behaviors and what causes them. 

After Marcia's talk, we went to listen to Dr. Ave Lachiewicz.  I have never known for sure how to say her name, but it is prounounced LaKahvich.  She spoke about behavior from a medical and physiological standpoint.  It was during this time that I sat by a fragile X friend, Kari.  It was nice to see another familiar face.  Eric and I ate lunch with Kari and another Fragile X family.  I loved how she packed her lunch.  I was a little scared about the strange food choices available.  If I hadn't been coming from Ohio, I would have packed, too.  As it was, I had pork tenderloin on a pita with mango chutney, a peach and chips.  I ate the pork tenderloin, scraped off the mango chutney and ate my Doritos.  lol. There was nothing wrong with the food choices, I am just a little picky. 



Me and Kari at the end of the day

 Anyway, after lunch, Kari saved us a seat in Cindi Rogers' session.  I just think the world of Cindi.  I have attended her sessions before at other conferences, but I am always so inspired by the success she has had.  She is so devoted to her sons, who are in their twenties and have fragile x.  She decided to go from being reactive to the problems to being proactive in trying to prevent them in the first place. 

She has a lot of great ideas.  One of my favorites is still the Ready-Not Ready method.  I posted something on Facebook awhile back about Drew screaming his head off while I cut his nails.  Cindi reminded me of the Ready-Not Ready method she uses with her guys.  Basically, I'll tell Drew that his nails need cut.  I tell him that when he's ready, he should let me know.  If he balks, I said, "Oh, you're not ready?  That's ok.  Just tell me when you are ready and we'll do it."  It was like following a script.  A few minutes later, Drew told me he was ready.  And he didn't fight me when I cut them.  Two things I learned.  Giving him a little control of the situation made him much more cooperative.  And relinquishing a bit of my control got the job accomplished much better than if I had insisted he get his nails cut when I wanted it done. 

Another thing she does is the "All Done" method when teaching her guys a new task.  She breaks it down and as they go through each part of the task, they move a picture symbol from one side of a velcro board to the "all done" side.  This helps them learn the steps of a new task and they know when the task is over--when there are no more picture symbols to move.

We are going to attempt to implement a regular schedule with the boys.  We may wait until school starts, but it might be a good idea to do it sooner.  Not sure what I'm going to do about that, yet. 

The goal is to try to relieve their anxiety by telling them what's going to happen, who is involved and how long it is going to last.  That alone could reduce a lot of anxiety.  We got some great ideas and Eric and I are looking forward to trying some.  Maybe not all at once, but one or two at first, and we'll see where we go from there. 

After Cindi's session, we went to a workshop with Dr. Braden to discuss practical things to do with problem behaviors.  We asked a question and she gave us a suggestion for what to try.  I am looking forward to seeing if it makes a difference. 

After the conference was over we went back to the hotel to freshen up and met up with Cindi in the lobby with three other women from Kansas.  Two were Fragile X moms and one was a Fragile X grandma.  We went out to dinner and sat and talked for a long time.  We laughed and laughed.  It was really wonderful.  Eric took a pic of all of us at the end of the evening. 

Today we had breakfast and hurried home so we could see our newest great nephew, who was born on Friday. 

Here I am, holding the little sweetie.  I love him so much!  I am so happy for my niece and her husband.