If you were to sum up the month of July the only word I can think of is AMAZING! July is Fragile X Awareness month and we have been so busy spreading awareness, sharing Fragile X facts daily and advocating fiercely.
Jackson started his Summer program at his new school and while we were absolutely terrified at how he would handle changing schools, new friends, new teachers and new therapists…he is thriving!! He has great friends that adore him, he has a Para that he adores and he is just loving everything about it. He is saying new words daily, which is incredible, he is identifying nouns, he loves to read to us at night (flips the pages and babbles his own story based on pictures) and is doing great with using the potty! The other day I picked him up from school and his teacher told me that he actually pooped on the potty. THIS.IS.HUGE!! We are not doing any real potty training with Jackson at this point. If he asks to use the potty, we take him, but we are not forcing it.
Next big event…we moved Jackson from his crib to a toddler bed. Again, this is a huge change for him. So, how did this work? Night 1 he came out of his room asking for his crib, so we put him in his crib and he went to sleep. Night 2 he laid in his bed and fell asleep pretty much instantly and has been sleeping in it ever since. After a week of the new bed, we took a part the crib and haven’t looked back! Way to go, Jackson!!!
This month Carter participated in a Siblings and Self Advocates virtual event where he did a water color of the National Fragile X Foundation logo. He had a great time and even asked if we could invite his new friends over!
This month we also had a fellow Fragile X mom and friend asked if I would participate in a school project with the Mississippi Gulf Coast Community College and my answer was 100% yes! Dan and I were interviewed by some amazing students that were learning about Fragile X and they also lit up their campus teal to support all individuals living with Fragile X. Incredible!
We also celebrated World Fragile X Day on July 22nd! 300 landmarks, bridge, buildings, etc. lit up Teal/Green/Orange in 6 continents, 13 countries and 46 states in the US!!! AMAZING!! Here is Missouri, we gathered at the Planetarium as it was lit up teal. We saw old friends and made new friends and just celebrated these amazing individuals and their families.
On July 24th, the Fragile X Resource Center of Missouri hosted a family bowling event, which was such a great time. The event actually fell during Jackson’s nap time, so Carter and I went to support our friends, socialize and of course, bowl. Carter bowled an 83, 86 and an 88. Not too shabby for being 5 and never having bowled before!
Lastly, I learned that all my efforts of pushing social media not only with my personal account, but the Fragile X Resource Center of Missouri helped us find not 1, but 2 local families that are impacted by Fragile X Syndrome. We are beyond excited that our outreach is working as we know there are a lot more families here in MO that we don’t know, but would love to find and offer any support we can.
Thank you all for reading our updates, thank you for supporting our journey and thank you for helping us spread awareness!
XOXO
Our Fragile Xperience 