Wednesday, October 3, 2012

Welcome to the Hotel California

FINALLY! Here it is folks!  The much anticipated blog about our trips to California and our research study.
DVD player + headphones = very necessary
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, and a bunch of Spongebob DVDs and we are  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). 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 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.
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 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.

Running the controls in the 'observation room' - we are usually on the other side of the big window. 
Owen is considered 'non verbal.'  He has about 30-40 words and signs he uses to communicate.  For example, this morning he responded verbally "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" as I brushed 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.)

A drink outside the MIND, shown in background.
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 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.  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.

On our flight from San Fran to Sac - on a 30 person prop plane.  O wisely reading emergency card. 
I am also working on other language skills - slowing down my speech ('You tend to talk really quickly, like a typical New Englander' she said gently.  WhathefuckaretheytalkingaboutIdonttalkthatfast! Nowhurrythehellupandgetoutofmyway, I'mlate!), 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?" "No." "Ummmmm. K then.")

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. 
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 or have a loved one who is.  The hotel staff is always warm and welcoming, 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!???"  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.  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 have parties.

Tough life in the hotel.
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.  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.  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, 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.
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 wheelchair and had a face that resembled melted wax, with most of his nose missing - a burn victim.   I thought of Shawna, and her dad, and her worried eyes, and her family's kindness.   I didn't know if I should greet him the man, or if he could even see me because I didn't know if he could see through his burned eyelids.  The couple went to order at the Bistro, and the staff member greeted him "Good evening sir, how are you?"  And he replied "Good."   They placed their order, and the wife then wheeled her husband over to the big screen, she settling in next to him on the couch next to his wheelchair, while they waited for their food and watched football.  He stretched out his arm and wrapped it protectively around her.

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 -              

1 comment:

  1. We live in Berkeley and have driven up to the Mind about every 6 months since Holly was born. Once when we did the MRI Study we stayed over night at the Kiwanis house across the parking lot from the main Mind Entrance. I love the staff there. I really enjoyed reading your blog. I love how you integrated things you learned during the study as well as the stories of those you met in your travels. it is too bad you were not able to do any site seeing. they have a lovely train museum in old town Sacramento, maybe for your last trip you can add a day to your visit to see the sights. Thanks for sharing your story.


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