tag:blogger.com,1999:blog-9172354762710486340.post2561198818284315560..comments2023-10-04T03:58:20.878-07:00Comments on Love and Survival with Fragile X: How good is the Fragile X Conference?SThttp://www.blogger.com/profile/17991027507602019139noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-9172354762710486340.post-4154914175933748422009-10-19T14:52:15.466-07:002009-10-19T14:52:15.466-07:00The conferences are very informative.My son is 13....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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-9172354762710486340.post-48782416493526303512009-10-13T20:48:17.974-07:002009-10-13T20:48:17.974-07:00Thanks so much, everyone. We'll think about it...Thanks so much, everyone. We'll think about it this weekend some more...SThttps://www.blogger.com/profile/17991027507602019139noreply@blogger.comtag:blogger.com,1999:blog-9172354762710486340.post-47644253052156172242009-10-13T15:44:08.008-07:002009-10-13T15:44:08.008-07:00It is sooo worth it! We have been to the the Atla...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. <br /><br />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.Leannehttps://www.blogger.com/profile/01005308552947337136noreply@blogger.comtag:blogger.com,1999:blog-9172354762710486340.post-84131087461278451832009-10-11T16:59:26.198-07:002009-10-11T16:59:26.198-07:00It is well worth it to go. That being said, it com...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. <br /><br />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. <br /><br />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! =)<br /><br />I know I am hoping to be there and I assume the Life With My X-Men Clan will be there as well. <br /><br />I think the feeling of "I'm not in this alone" is staggering when you attend the conference.theotherlionhttps://www.blogger.com/profile/04980607353600802565noreply@blogger.com