CONNEXION: Your connection to our local Fragile X community

July 16–19, 2020
Marriott Renaissance at Sea World, Orlando, FL

We are excited to announce our newest and most exciting way to connect with FX families yet... Stay tuned for the launch of our FXAWS PODCAST coming soon!

Lewis County Autism Conference Success

"I had the opportunity to attend an Autism Conference as a Vendor for FXAWS in Centralia WA. Our President Michelle O'Dell invited me to her wonderful home for two nights as the drive from Clarkston WA was around 7 hours each way. I've traveled to a lot of different conferences but this was honestly one of the most rewarding ones I've been involved in. Even simple things like saying I was from Clarkston Washington without adding "state," made the experience pretty amazing. Many attendee's had questions about Fragile X. Some were foster parents or professionals who had just heard of Fragile X because they had just received a child on their case load. A few were familiar with FX; however, most people were very inquisitive and I was happy to share my FX knowledge with them. Many other vendors not only had brochures, but shared their personal experiences with me as well. To name a few: Ombuds, Able Account, Washington Autism Advocacy, and Apple Health Medical had great representatives. This experience taught me more about programs available in Washington and motivated me to focus on a broader scope of Conferences that might not be solely focused on Fragile X but very beneficial to our community. Overall, I highly suggest getting out and either volunteering or attending events. The networking and education opportunities are very rewarding. Our Fragile X family may even have some outstanding hosts like Michelle who can assist you if you have to travel. I'd like to give a special thanks to Michelle and her family for being great hosts and inviting me to their home for this opportunity." -Wendy G.

Monday, February 24- Tuesday, February 25, 2020
Crowne Plaza Hotel, 1480 Crystal Drive, Arlington, Virginia.

Want to make an impact? Join us this year in Washington D.C. for an unforgettable experience. Former member of Congress, Gregg Harper will be joining us this year as an advocate! For questions, email Dan Whiting, Director, Community Impact, at dan@fragilex.org. Registration is just $25! Scholarships available for travel expenses through Fragile X Association of WA State.

More interested in advocating locally? We will keep you updated on those opportunities coming up this year.

The ARC of Washington State

https://www.arcwa.org

Washington State ABLE Savings Plan
https://www.washingtonstateable.com/

PAVE
https://wapave.org/

Preparing for your child's Individual Education Plan (IEP)

AmazonSmile
A portion of every sale can be donated to our local group if you use smile.amazon.com and select Fragile X Association of Washington State. Or, just click here: http://smile.amazon.com/ch/91-2018788

Fragile X Clinic * Determination

We continue our search for a physician to lead a clinic where patients across the spectrum of FX disorders may be treated. Please email us if you know medical professionals who understand Fragile X and FX-associated disorders. We have connected with professionals at U of W and Seattle Children's in hopes of gaining support. We are very committed to once again establishing a FX clinic in the Northwest Region!

The Fragile X Association of Washington State is run entirely by unpaid volunteers who are passionate about our mission. We are always looking for individuals who want to volunteer in our organization! Contact us at washingtonstate@fragilex.org if you are interested in getting involved.

AnXiously Waiting… and Waiting

Christmastime has by far been the most anticipated holiday in our home each year since our son, Nathan, was 5 years old. Most kids don’t give a second thought about what goes under the decorated tree and the incredible feeling of total excitement to see what’s behind the wrapping paper. Oh, and how about Santa! Every kid knew who that was. It took a few years for us to teach Nathan how to unwrap presents. I struggled emotionally through those times when the fine & gross motor skills weren’t quite where they needed to be to rip all that pretty paper from the box. Especially hard were the times in front of family members who’s kids ripped away at presents like nobody’s business while Nathan sat in our lap not knowing what to do next. I remember those moments where “exciting” had to be taught with exaggerated emotion just as the present was exposed. I remember wondering if we would ever get there. One of our favorite family traditions, which my mother had started with us, was visiting Snowflake Lane in front of the Bellevue Square Mall. We would visit Santa in person and get pictures taken with him and end the evening with dinner at Red Robin or Cheesecake Factory. We always made it through without too much fuss. If it became too uncomfortable for Nathan, there were always encouraging people close by and lots of them. “High-fives” and “elbows” is what he liked and he trained everyone waiting in the Santa line how it’s done. Nathan has always been pretty social and fond of getting everyone’s attention.. repeatedly. :-) Last year, we met Santa at a new shopping mall here in Olympia. It took a few times for Nathan to actually get close to Santa. He would cover his eyes with his arm ~ total anxiety ~ and want to leave after several attempts over two and a half hours. As his mom, I naturally want to “fix” situations that are uncomfortable for my son and try to make them easy. But as he grows older, I have learned to stand back and watch, be patient, encouraging and bite my tongue so I don’t cry. While we waited, this beautiful child of ours finally drew up the courage, went up to Santa on his own, sat next to him and smiled for the camera. I learned a great deal from Nate that day. All those worries I had in the past around unwrapping presents seemed like nothing. My kid had his own agenda and his own time clock. Who was I to interfere. This year, we chose the dinner hour for visiting the mall and standing in the same line. I shared with Santa’s elves that people should go ahead of us since we might take a few attempts to see Santa. It was our turn six times before Nathan was “ready”. I stayed quiet, having learned from last year. Nate slowly approached Santa with extreme caution (anxiety), arm over eyes, rocking his body back and forth, repeatedly saying, “Whazzzzzzuuuup?” to Santa. I knew right away Santa “gets it” when he didn’t look Nathan in the eye and nicely engaged in short chats with him. With help from an incredibly nice man in line behind us who had encouraging words for Nate, to the entire line applauding Nathan as he got closer, he finally made it up to Santa giving him “elbows” instead of a smile. Perfect moment captured by the photographer. This year wasn’t like the previous, but then again we’ve learned not to set expectations like that going forward. We have several pictures now from past Christmases of Nathan with Santa. Some with red, puffy eyes; one with fingers in his mouth; one where he’s smiling big and another where he’s staring off into space. Nathan is now eleven and a total pro at ripping paper from his gifts and naturally excited on Christmas morning! He’ll always be excited to see Santa in person. I won’t know if he’ll ever be comfortable enough to just walk up to him first attempt in the future, but it’s certainly possible. I’ve learned from Nathan that anything is possible and waiting anxiously for the right moment is totally okay. -Michelle O.

washingtonstate@fragilex.org

17th Annual International Fragile X Conference

Nathan O'Dell

AGE 11
Olympia, WA

17th Annual International Fragile X Conference

Nathan O'Dell

AGE 11 Olympia, WA

AGE 11
Olympia, WA