Well, it's been a little over a week since I returned from the Fragile X Conference in Dearborn, MI.
To say that I had a good time would be an under-statement. I am almost 11 years post-diagnosis, and this was my 3rd conference, so it's a little different for me than say first time attendees. I'm not trying to attend every single session furiously taking notes the entire time.
For me, it's more about the people I have become friends with over the past 11 years, and making new ones each time I attend. Really, the parents are the ones with all of the information that is the most practical. Don't get me wrong, the professionals in the Fragile X World, plus the researchers and the clinicians are the best, and without them, we wouldn't be where we are with research and new medication trials and such.
So, it's the other parents that leave the biggest impression, for me at this point. Parents have the best suggestions, they have "been there, done that" for virtually everything FX related. I learned more from talking to others and sharing experiences, that it makes the conference that much more valuable.
Plus, there's a bonding that takes place, after the learning day is over, where it's the camaraderie that counts. The Fragile X lessons I learned I took back and share with both kids teachers, and actually volunteered to come in and talk to my 2nd graders class about Fragile X and that's all thanks to a mom who is my role model as far as advocating for her children. She gave a presentation about what she says to her son's classmates and it inspired me so much, that I came home and started finding out what I could do to be able to do the same.
I'm empowered...it's as if you get the feeling there's nothing you can't do for your children to advocate for them in what ever way they need.
A terrific trip, all around....good friends, good information, good outlook for the future....I loved it!
2 comments:
I'm 4 years post-diagnosis, this was my second conference......and I still sat through sessions furiously writing notes. But I felt a little less guilty this time, when I needed a break and skipped a session to hang out. Hope to meet you at a conference one day!
Would LOVE to know what kind of things to say to my son's classroom (kindergarten) this year. I read about another mom who did this and it's made me want to do it. Any suggestions, please post them on my latest blog entry!
So true about the support of the parents. Since there's such a wide range of 'symptoms', it's always great to meet families with ones that match closest to your own. Otherwise, I'm getting great, but too general, suggestions that may or may not work with our particular case.
Glad you got to go!
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