We fly in on one day, spend the next day at the MIND Institute, and then fly home the next. By this

*Is the name of my blog offensive to you? I hope so, because it sure as hell offends me. And it's what I would like to scream in the face of the many clueless people coach tours of italy who casually use 'the r-word' when talking to me - it's become such a part of the American lexicon I hear it on a daily basis. coach tours of italy Do you GET that it is my son you are talking about? My BABY? STOP IT!
Ironically, my FX friends and myself often refer to the "World of Fragile X" AS the "Hotel California" - you can check in anytime you like, but you can NEVER LEAVE. However, while in California, we have been staying in a Marriot Courtyard Hotel on Y street, an actual 'Hotel Cali', a small hotel tucked away in the huge medical complex that the MIND Institute of UC Davis is nestled in. The medical complex contains not only schools of medicine and nursing, but a larger medical complex and Shriners' Hospital. Basically, we are in 'nowhere Sacramento' on an enormous medical complex - so no, we haven't seen any 'sights' or gone anywhere. Insert sad face here.
We fly in on one day, spend the next day at the MIND Institute, and then fly home the next. By this point, 4 Cali trips under our belt, O is quite the traveler. And by trip 4 I had finally figured out a perfect packing system. A bag of snacks, a DVD player, coach tours of italy and a bunch of Spongebob DVDs and we are good.to.go. He'll sign "airplane" and "swim" (as in "I want to go on an airplane and go swimming! "Yes O, we are going again soon.") Yes, it's a lot of traveling for a one day visit (we are only at the MIND for 3 hours per visit, actually). coach tours of italy We spend the rest of our time at the pool swimming, which is O's favorite part of the trip.
" The UC Davis MIND Institute ( Medical coach tours of italy Investigation of Neurodevelopmental Disorders ) is a collaborative international research center, committed coach tours of italy 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."
Owen and I are participating in the "Parent Mediated Language Study," which essentially means they are working with me to change the way I speak and interact with him, to enhance and improve his verbal skills . Our first visit was 5 days long and we were both assessed - he for his language and play skills, me for my cognition. (I don't KNOW which picture comes next in that pattern! Are these riddles? Huh? Is it possible for me to flunk this?) I have received training and coaching from the Fragile X staff on changing my language and behavioral interactions with him. My education has been built and enhanced with each trip. I am the 'lab rat,' the subject of the study, while Owen ('s verbal skills) are the measure coach tours of italy of my 'success.' I send in a video 'routine' once a week that I receive written feedback on, and Skype with them an hour a week while I play with Owen and they again coach and give me feedback on our interactions. Participating in this study has improved my ability to parent him, and has fo sho improved his language and behavior. It's been a godsend.
Owen is considered 'non verbal.' He has about 30-40 words and signs he uses to communicate. For example, this morning he responded verbally coach tours of italy "Hi!" to my "Hi Owen!" Then he said 'Bob!" to watch Spongebob, then signed "Me" "Eat." When I asked him what he wanted for breakfast, he signed "Cheese" while also saying "Chzzzzz." While I was getting him dressed, he signed "All done" (as in "You may not be all done dressing me, but I AM all done with you dressing me!") and then said "NOOOOO" coach tours of italy as I brushed coach tours of italy his long luscious blonde hair. He also loves screaming "BUUUUUUUS" when the big yellow bus arrives to get the older kids (he does so because, well, they do it also). He'll say "Bye!" when getting on the bus and his new thing has then been signing 'Daddy' and 'swim' (asking to do swim with Dad). So he's 'non-verbal' but the kid still manages to get his point across. Like Monday, when I served him dinner of baked chicken, green beans and couscous and heard him utter, for the first time, "YUCK!" Oh well thank you buddy! Now eat your freaking dinner! (He didn't. He made some additional gagging noises and I gave him a slice of bread. Beat it kid.)
Some of the what I has learned has included my often-used-life-saver called the 'First/Then.' It's how I get him to do most of what he doesn't want to do. And it often involves Spongebob. I can't TELL you how sick I am of this Spongebob character. "FIRST coach tours of italy you get dressed, THEN you watch Spongebob." "FIRST you take a bath, THEN you watch Spongebob." "FIRST you go in the house, THEN you watch Spongebob." He was obsessed with Jack's Big Music Show, then Blues Clues, now his sister has brainwashed him into loving Spongebob - it's the only show they both like. Though he is developing an affinity for "Victorious" - B says "Mom, O LOVES pretty teenager girls!" Nicely played B, nicely played. coach tours of italy I recently heard her say "Owen, FIRST you get on the chair with me (pats spot next to her on recliner) THEN I'll turn on the TV." Use it for good B, not for evil.
I am also working on other language skills - slowing down my speech ('You tend to talk really coach tours of italy quickly, coach tours of italy like a typical New Englander' she said gently. WhathefuckaretheytalkingaboutIdonttalkthatfast! Nowhurrythehellupandgetoutofmyway, I'mlate!), coach tours of italy close face to face interactions, not asking questions (they don't enhance language, are frustrating to a child who can't respond, and can set up conflicts. "Do you want to go take a bath?" coach tours of italy "No." "Ummmmm. K then.")
I'm working on 'Expectant waiting"- coach tours of italy which is allowing him time to finish thoughts/sentences coach tours of italy - "You want me to roll your window......." "DOWWWWN!" "Let's pull your pants....." "UUUUP!" The skills I am learning coach tours of italy teach him to use and reinforce his vocabulary. coach tours of italy 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.
One of the coolest parts of our trips have been our stays at the hotel. It's the only hotel close to the medical complex, so many of the guests are receiving medical services coach tours of italy or have a loved one who is. The hotel staff is always warm and welcoming, coach tours of italy and by now most know us "You're back! So good to see you! Blue Moon?" We have our favorite staff at the Bistro and our favorite concierge who attempts to help me with my research-study-lended-Mac and ribs us "Back AGAIN!???" coach tours of italy We even know the housecleaning staff who always greet Owen.
We never fail to make friends by the pool. On my second visit I met an 8 year old boy named Romero. coach tours of italy I'm that creepy lady who always talks to children. WHAT it's my job!!?? Plus they are more amusing and honest than grown ups. (Fine, I admit it, I talk to grown ups too, you got me.) He told me "I'm here for my 3rd eye surgery. My birthday is over the summer so I never have birthday parties. My older sister has a birthday over the summer but she always has parties. She has lots of friends who come to HER parties." Romero, was big for his age, both in height and weight, and I wondered the real reason why he didn't coach tours of italy have parties.
At our last visit we met Shawna, her husband and her four kids. Her two sons were 2 and 4 years old, while her daughters were 7 and 10. I saw the kids staring at Owen, which I understand - he can be a little flappy, a little squeal-y. Often times kids 'notice' something is different about him before most adults do. I saw the 4 and 7 year old exchange glances and smirks in the hot tub while we shared it with them. Shawna and I chatted and explained to each other the reasons for our stays. I told her about Fragile X and our research study, while she disclosed to me that her dad, an electrician, had just been badly burned while on a job. She described the horrific noises in the burn unit, people screaming in pain as their dead skin was scrubbed from their bodies with SOS-like-looking pads. I could see the pain and worry and love in her eyes for her dad. The shock and disbelief are as familiar to me as my mirror reflection. coach tours of italy She and her mom and her boys had stayed at the hotel for a week, while dad and the girls had visited and gone home to attend school. coach tours of italy Her dad was doing OK, getting better, but they were waiting for his bandages to come off to view the damage to his body.
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, coach tours of italy yet they rarely happen from children. coach tours of italy 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.
During our last night in California at our September visit, Owen and I were eating dinner at the Bistro, like we always do. A woman entered with her husband, who was in a wh