Monday, July 30, 2012

Home again...

Finally home with both kids. :)  Hubby and I have been in Miami with a thousand or so of our best friends - mostly other families with fragile x syndrome, but also the experts(doctors, therapists, researchers, etc).   I have to say first how immensely grateful I am to have such fantastic family who really step up when we go to conferences.  To make it easier and more fun for everybody, we split up the kids.  Like most siblings, they fight.  A LOT.  So a week apart is a very good thing and makes it much more pleasant for everybody.  So she went one way and he another and everybody seems to have had a grand time. 
The International Fragile X Conference is about 5 days of sessions covering just about every possible thing you want to know about FXS.  The latest research and clinical trials, the speech and occupational therapy discussions, sessions on the related disorders that cause tremors and ataxia or early menopause, behavior, toilet training, sibling issues, special needs trusts, fundraising, advocacy, and much more.  My favorite part though is always the friends.  I have made some very dear friends at prior conferences and we usually only manage to see each other every two years at this event, so catching up with them is great fun, and I always meet new friends also, and I know I will look forward to seeing them in 2014. 
Speaking of 2014, the next conference?  Orange County, CA.   Yep.  And of course I have already been looking online at the hotel - it's only blocks from Disneyland.   Eeeeeeeek!   I've already been researching what airport to fly into and looking to see if there are direct flights and debating about bringing my kids/not bringing my kids.  I'm not sure my kids would forgive me if I didn't bring them.  Anyway...we've got a year and a half or so to make that decision, so I'm going to try to set it aside for a while. 
So, first I need to work on putting into practice what I've learned.  First order of business - potty training.  Yep, he's 9, but we are still not there, and clearly what we are doing isn't working.  After the potty training session, I spoke to one of the presenters, told her a bit of our issues, and she said she would work with me to find a better plan.  So for now, I'm to log everything for 2 weeks, email it to her, and we will go from there.  If we can't figure it out by email or phone, she will travel to Birmingham and work with me.  Yay - I found my potty training miracle worker(I hope)!  I don't know what it will cost me, but really the laundry and the pull ups are pretty expensive too.  So we have a plan to address that issue. 
Next will be dealing with the anxiety and aggression, trying to discipline myself to make picture schedules and other things to make his world make more sense.  Fine motor issues are another thing we need to work on, and I've got some more strategies for that. 
Our local group has some new ideas and plans for fundraising, awareness, and social events that I'm pretty excited about.  We are hoping and planning to bring some of the awesome experts here sometime soon.  Lots to do and plan... 
For now - back to real life!

Saturday, July 21, 2012

Anticipation... I haven't posted anything in a reeeeally long time.  Guess I haven't had a lot to say.  Or more likely just haven't taken the time to type it.  Anyway...I am just about giddy with anticipation.  Today is laundry and errands in prep for the coming week.  Tomorrow is church and then we have a fragile X awareness event at the local minor league baseball game.  Hoping to meet a few more families from our area there and spread a little awareness also. 
Monday, Lindsey and I, and I think my friend Beth and her daughter are going for mother daughter mani-pedis - Beth and I have to have cute toes for Miami, right?  Monday afternoon Tim and I take the kids to the family that will be taking care of them while we head to Miami for the fragile X conference on Tuesday.  And the conference is the reason I am giddy.  More accurately, the people who will be at the conference are the reason.  At our first conference in 2006 in Atlanta, we met Matt and Beth, who live very nearby, have kids close to our kids ages, and have become like family.  Also in Atlanta, Tim and I were walking to a Ruth's Chris one night during the conference and met Kristie, Eric, Kelly, and Tony. They kindly invited us to share a table with them, and they became instant friends of ours who we wish we could see more than once every two years.  We meet new people every time we go, and so we look forward to seeing many old friends, and we know that we will meet new ones also on this trip.  I look forward to the time with friends even more than the sessions - and I really do look forward to the sessions. 
Like many in the FX world, social anxiety is a challenge, but at conference, at least for me, that becomes so much easier. Surrounded by people who know and understand and live fragile X, I feel like I'm home.  Not having to explain "fragile what?" to anybody is wonderful.  And as somebody (Arlene maybe?) said on the getting ready for conference podcast said - I can take off my armor.  That is such a wonderful description of how conference feels to me.  Surrounded by people who understand me, understand my kids, who aren't shocked by stories of the bizarreness that sometimes happens in my world, who have stories equally bizarre and uncannily similar - people who "get it" - it's just one of my favorite things.  And so I look forward to that feeling, and I know I will meet lots of new friends, and I will want to take them all home with me.  Ok, maybe most of them.  ;)