|DVD player + headphones = very necessary|
"The UC Davis MIND Institute (Medical Investigation of Neurodevelopmental Disorders) is a collaborative international research center, committed to the awareness, understanding, prevention, care, and cure of neurodevelopmental disorders." And their mission is "To find effective treatment and cures for autism and other neurodevelopmental disorders."
|Running around outside the MIND during a break.|
|Running the controls in the 'observation room' - we are usually on the other side of the big window.|
|A drink outside the MIND, shown in background.|
|On our flight from San Fran to Sac - on a 30 person prop plane. O wisely reading emergency card.|
I'm working on 'Expectant waiting"- which is allowing him time to finish thoughts/sentences - "You want me to roll your window......." "DOWWWWN!" "Let's pull your pants....." "UUUUP!" The skills I am learning teach him to use and reinforce his vocabulary. It's been pretty fascinating and as his mom I am willing to do whatever it takes - even five trips to Cali - to help him however I can. Kids with improved verbal ability are less frustrated because they can express themselves and they feel understood. I try not to worry about the future, while at the same time keeping an eye on it...better language now leads to better language then, improved understanding now leads to better behavior then...don't worry about it, just work towards it. Improve now, improve the future.
|Over somewhere USA, looking for a creature on the wing, per usual.|
|I'M SO HUMILIATED! I LOOK LIKE FREAKING ALFALFA!|
|Tough life in the hotel.|
As Owen got out of the hot tub, her 4 year old son Cannon ran over with a towel for Owen. After that point, she told me her boys always asked for Owen while at the pool. We spent the rest of the afternoon with them, and both the morning and late afternoon the next day. They brought Owen ice cream and splashed in the hot tub with him, told me about their life in California, hunting with Daddy and their Grampy. They were kind to Owen, and I can't describe how happy that makes me. Often kids ARE kind and generous and thoughtful to Owen, and for some strange reason it always surprises me. I am prepared and ready for unkind words and looks, yet they rarely happen from children. Kids notice differences, but when explained, they readily accept. I thank Sesame Street, inclusion classes, and the tolerance that kids are now taught in school, as opposed to my youth, when the 'different kids' were stuck in that room in the basement, that was under the stairs and next to the cafeteria. Now when we are out in my town, or at local restaurants or the town pool, Owen is greeted far more than B or me. "Are you Owen's mom?" Why yes, yes. I. am.
|Cheesing in the hot tub.|
I am lucky, and I am thankful. Thankful for the opportunity to participate in a pilot research study. Thankful to have the opportunity to fly across country with my 4 year old and expose him to traveling, not once but 5 times. Lucky to meet world-renowned experts in the world of Fragile X. Thankful to meet all sorts of people, tell them about Fragile X, and have them share a piece of their life with me, many deep in their worst life moments. We have one more visit left, and I will miss them all - the gorgeous weather, the MIND researchers, the hotel staff, and the hotel guests - strangers who have become friends.
I'm thankful to stay at the Hotel California, a very special hotel with very special guests, and a staff that knows just how to greet very 'different' people, who are really - just.like.you.