Sunday, October 11, 2009

How good is the Fragile X Conference?

So we need some advice, fellow Fragile X bloggers. How good is the Fragile X conference? We had planned to go, but then realized it falls on the same weekend as our 5th anniversary. We have been planning to spend our anniversary at our favorite honeymoon hotel on Vancouver Island in Canada for years - pretty much since we left the hotel on our honeymoon!

We thought about going to just the first couple days of the conference, and then flying to Canada, but the logistics are complicated. Is it worth it to go for just two days? Do we bring Quinn with us to the conference? How is it for kids there? Is there childcare?

If we can't bring him, then we probably won't go because there's no way we can get someone to watch him for 5-6 days (a few while we're at the conference and a few while we're in Canada). I also couldn't bear to be away from him for so long. The longest we've been away from him is 24 hours, so contemplating just the 3 days for the anniversary trip is a lot.

Anyway, we'd love to hear from those of you who've been! Thanks.


the other lion said...

It is well worth it to go. That being said, it comes around every two years. So it's not like it won't ever happen again.

I took Punkin to the last one because my sister couldn't watch him. And, like you, I was scared to leave him at all. The childcare was okay. At the last one, everyone was in one big room the whole day, which was rather overwhelming for my little guy. But they serve them lunch and let them play all day. It wasn't extremely organized as far as having activities for them to do throughout the day. I don't know if it will be the same this year since it's in a different city. I definitely gave them my opinion! Other people said they have been pleased with the care in the past. That being said, I would be willing to try out the childcare again if need be.

The nice thing about the conference is that no one looks at you badly if you skip a session or bring your child to a session or leave a session early. It is VERY family-oriented. We all know what's going on and we've all been there. No need to explain! =)

I know I am hoping to be there and I assume the Life With My X-Men Clan will be there as well.

I think the feeling of "I'm not in this alone" is staggering when you attend the conference.

Leanne said...

It is sooo worth it! We have been to the the Atlanta conference in 2006, and St Louis in 2008, and we plan to attend this one as well.

We have made great friends every time and learned a lot. Hearing so many experts sharing ideas - you can't help but come away feeling empowered and hopeful. It feels like one big family - everyone 'gets it'. We have not taken our kids yet, but we have great family that we are able to leave them with. Lots of people do bring the kids and they seem to do fine there.

Faydra said...

This was actually posted to the FXS listserv by someone who didn't want to have to log in to comment so in case you didn't see this there, I'm posting for her here -- FMS

Hi I'm Sue in NY, my son David is 8 with FX. If you have not been to an FX conference by the NFXF, you HAVE to go. For me it is worth it to go every year. I learn soooo much, I refresh my knowledge, I connect personally with our international experts, yes we talk on a first name basis, and I have found so much support from the other families from around the country and other nations. It is probably the most empowering event I know. At 3 your son is just really getting into the harder years, you will really benefit from this. Fram about 4pm on the hotel and location can substitute for an anniversary getaway if you can get childcare. I think it would be very good for a marriage to do the conference together and would strengthen your marriage! See you there, email me private at mcburniefarm @ msn .com or through the listserve support group! Sue

Sarah said...

Thanks so much, everyone. We'll think about it this weekend some more...

1specialfamily said...

The conferences are very informative.My son is 13.We have only missed one or maybe two since he was diagnosed.The conferences give you the opportunity to visit one on one with experts from all over the world, many with differing views.Also, some of the presentations are on subjects you have never thought about.It can be a very mentally and emotionally challenging week, but you always come home with new information.We have never used the childcare, we use that week as our time and always find something different for the two of us to do in the evenings that are not related to the conference.