Thursday, June 5, 2008

Fragile X Conference


Well, it is official. I will be flying out to Missouri for the 11th International Fragile X Conference. I have never flown before! I am scared. Can I say that more bluntly?

I am going not only for my own kids but for the benefit of getting information out there for everyone else. If you have not yet clicked on the Fragile X link to find out what Fragile X Syndrome is I encourage you to check out www.fragilex.org -- there is a video that is 7 1/2 minutes long that really gives you a good idea of what kids with Fragile X Syndrome are like--if you haven't already gotten a good idea from reading my blog.

I was very, very blessed to be able to go to a class 3 weeks ago for children with autism. Every time autism is discussed thoroughly, Fragile X Syndrome is usually mentioned. Often kids with Fragile X Syndrome can also have autism. So I went to the class to learn more about how to help children with autism relate to the world around them. It is quite an intense learning experience and I am very grateful for it. But, at the same time I am learning how many people truly do not understand Fragile X, nor do most people want to. Why? Because it is a genetic disorder and it is scary to have to look at it as affecting other family members.

Anyway, I just want to learn all that I can--so, I am going to the conference. I am going with another mother of Fragile X Syndrome who is involved in the Utah Association. I am excited to come back and talk to people about what I have learned. I have already been asked by the school district to teach a class on Fragile X Syndrome for all the preschool teachers. I have flyers around our area at doctor's offices and schools.

Just doing what I can to educate so that more people know how to help my children and anyone else who has Fragile X Syndrome.

5 remarks:

amyandrandy said...

Good Luck with the whole flying thing! I am excited for you. Have fun at the conference as well.

Suzy said...

Awesome! Good lukc on the flight. It'll be great. And don't be afraid to ask for the whole can of soda...even if they just give you a cup. You can get thirsty on those flights! LOL!

Ethington Family said...

Rach i just flew home from Utah with all four kids by myself. you can do it. I agree with Suzy, Brett and I always ask for the can. I figure for as much as a flight costs they can give me the 50cent can instead of the 25 cent cup. Take care and I'm proud of you for getting information that can help you and others. Love, mary

Ethington Family said...

I wanted to see you, in fact I almost called before I came. I knew that I wouldn't have much time though and my family can get pretty greedy with my visiting time. I barely even got to see Brett's family before my mom started feeling picked on. I hope to come again in January. Lets get together for lunch or a play date or something. mary

seesuerun said...

Hey Rach it's me! So fun to read about what's going on. good luck with the trip! Thats awesome.

Susan