What a Difference One Day Makes

This time of year the words to songs reverberate every space around me, “It’s the happiest time of year”; or “Oh what fun it is to ride….”; or “Have yourself a merry little Christmas”.  December has never been my favorite month, even though my own birthday falls within it.  It could have something to do with the fact that there is less sun, but it also means more stress, less money, and less time to spend with those that we are supposed to be spending it with!  I equate it to the planning and execution of a wedding, although this event happens once a year!  Expectations are everything, right?

When my oldest son was born in 1989 I had high hopes of shifting that mentality in favor of that “holly jolly Christmas”, complete with decking of the halls, filling the air with smells of Christmas, and gathering around the tree singing carols.  Before Jake was really old enough to really enjoy all of the joys of the holidays, his younger brother was born.  To our shock, both were immediately diagnosed with a genetic intellectual disability called fragile X syndrome.  This had nothing to do with Christmas, but it was due to a gene, a gene that I carried and passed to them.  Any and everything about the smells and sounds of the holidays were drowned in grief, sorrow and lost expectations.  When they were both small, it was one of the most difficult times of the year for them and for us.  Once they started school, the energy emitted by everyone else was compounded by the fact that they sensed this stressful energy.  This made for a miserable time of “joy”.

My husband, Chris and I persevered, trying everything from giving toys that were of high interest, or attempting to create opportunities for happy memories.  Over time, we found ourselves on a mission to find the perfect gift…that one with the “WOW” factor.  It was not to be.  Both boys fought with every cell of their being to try and keep control of themselves.  We witnessed incessant tears, utter fear in their eyes, a severe absence of interest in anything resembling a gift, and no joy whatsoever.  They were knee-deep in overstimulation, frustration from lack of language, no motor skills to enjoy a gift, a constant shift in schedule which, in turn, caused the disruption of all that they knew to be safe. 

It took us some years of suffering through these experiences to finally realize that our own standards and expectations were never going to fulfill our boys’ needs or force the reaction that we wanted.  We finally found a way to focus on the little things, like their love of lights or safety in the predictable.  No, it wasn’t what we had hoped for, but it was a way to reach the point of contentment.  I cannot say enough about contentment.  We decided to make a big deal about taking the time to put up many lights, and to go see lights!  We’d pack up the car all dressed in our pajamas and drive all over town to see lights.  The “Ooooohsss” and “Aaahhhhhhaaaaassss” and “Eeeeeeeessss” from the back seat fed Chris and I that magic potion we so craved.  Then, we made a tradition of taking a carriage ride on Christmas Eve through downtown to see the magical displays of lights.  This took some practice, but we finally made it successful.  Is it conventional?  No.  But, it is true perfection for our boys.  As time passed, it didn’t take too many years for the guys (no longer “boys”) to figure out that on Christmas day they would be recipients of some of their favorite things, so we continue to give a measured number of gifts, but the thrust of the season is spent trying to make a new and successful memory.

As the boys turned into men, now aged 26 and 23, we continue to aspire to make December fun and exciting, but more than anything, we strive to make a new and joyful memory each and every year that we can cling to.    Some years are more successful than others, but we keep trying.  This year was no exception.

In early November, Joe (our youngest) saw a commercial on television that advertised a Christmas train ride that attempts to reenact the movie “Polar Express”, one of his favorites.  He pointed to the tv with great excitement, attempting to get our attention.  We only caught the end of the commercial, but it showed again a few days later.  We jotted down the website, waited until the guys were in their beds, then read to see if it would be pursuable.  Knowing the many strategies and approaches that we have learned over the years that make any experience successful for our guys, we proceeded with caution.  The cost was not exorbitant, and the choices for reservations were many.  We decided on a preliminary date and time, then I would call the ticketing office and speak to a live person the next day.  I’ve learned over the years that this is often the best way to alleviate any worries in my mind---afterall, asking questions is a good way to find things out!

I dialed the reservation number with my list of questions close at hand.  I asked how long the trip would be so that I could decide if it would meet the tolerance threshold we know our guys possess.  I asked what the exact schedule of events would be.  They serve a meal on board, so I asked about the menu.  Joe only eats a handful of items, so this is important.  The reservation agent explained that we could board up to 45 minutes before departure; the meal would be served shortly after the train ride began, and would include a selection of items that Joe would also eat; we would ride 45 minutes from the town of Canon City, Colorado, to the Royal Gorge; we would make our way through the lighted North Pole and pick up Santa Claus, who would then board and pass through each car to greet each child or person.  Hmmmmm….I thought it all sounded very doable!  We purchased 4 tickets and waited for the date to arrive!

I know our sons, and now I knew the details of the trip, so I went to work developing a way to help them understand the elements of it.  I spent years learning about what is important for them to know before we set out on anything new, and they include what’s happening, how long it will last, when they are done, and what’s next.  First, I completed our monthly calendar that hangs on our refrigerator.  For the day of the train ride, I simply put a picture of a train and a hotel because we were planning to stay overnight near the train station after the ride.  Then, I put together a visual schedule of the steps in what I call an “all done” method.  These pictures probably don’t mean much to a bystander, but they are very clear indicators to Jake and Joe.

I hung up the calendar on December 1^st, and verbally went over the new items to plant the seed.  When I pointed to the Sunday pictures, I stated that we were planning “a ride on a train, and a hotel”.  That was it simply put.  I did not elaborate or go into further detail.  It seemed to provide words that didn’t add any threat to the guys, so they accepted it and moved on.  We had read the book “Polar Express” several times and we had watched the movie numerous times.  The word “train” was familiar and non-threatening.  The word “hotel” had not been used in several years since we generally took “Rocket” (our RV) anymore, but it didn’t have any negative connotations connected to it.  I held the visual schedule until it was time. 

On Saturday, the day before we were planning to go I pulled out the visual schedule.  The weekends always present a less demanding time-frame to present something new, so I took advantage of that.  I, first, sat with Jake, my easier one, and went through the schedule, reinforcing each step with a verbal queue connected to each photo.  He seemed un-phased except when I said the word “train”, to which he responded with an excited gasp!  Next, I went to Joe, went through the schedule the exact same way, but got a much more enthusiastic response of, “All right!!”  Now, to get through another night before we could even leave.

To further enliven that Sunday, we had planned to have lunch at a restaurant with a friend that lived halfway.  We didn’t get to see him often, so we took advantage of the path to spend some time with him.  I had created a separate page of visuals for that stop, and it went off without a hitch.  Then, I pulled out the page with the details of the train.

As we drove the extra 1 hour and 15 minutes to Canon City, Colorado, from Denver, I reiterated what we were doing.  I included what would come next and continued all the way through the schedule to the end by pointing to each photo and using the verbal queue.  Our first stop would be to pick up the tickets at the train station so that we would be all ready to board the train upon arrival at the station.  I did that part by myself while the guys waited in the car.  Next, we checked into our hotel, had some “down time” and then got dressed in our pajamas.  I must say that this one detail was a high point in everyone’s day!  To be able to wear our pajamas before it was even dark was a sure-fire bonus!  Chris and I knew that it would be ok to parade around town in our pj’s during daylight hours since it would be dark when we disembarked the train.  That’s what we told ourselves anyway.

We drove to the train station, had our tickets in hand, and walked to the gate.  The ticket-taker was dressed in proper Christmas attire wearing a smile to match.  He directed us to the person at the bottom of the stairs.  She, also dressed in full attire, helped us up the steps of the train.  Neither Jake or Joe, seemed even the least bit hesitant, which I was very thankful for.  They were following the steps of the schedule like true pros.  The Conductor glanced at our ticket and directed us to our table.  Joe and I took the seats facing forward while Chris and Jake sat at the opposite side.  Joe, in true Joe fashion, proceeded to get out all of his coping mechanisms, including his portable DVD player and PSP complete with earphones.  He was in his comfort zone.  Each of the guys had tightly clutched their neatly printed (in color) letters to Santa with photos of their carefully chosen wishes through the entire day.  They knew from the photos I had prepared that once they saw Santa they could present him with their letters.  This gave them each a purpose! 

Shortly after we were seated, the spunky server came around to offer us each a drink and dinner choices.  We ordered our meals, relaxed and listened to the chatter from the other tables around us.  Each table was occupied by mostly young families.  Some even had Grandparents with grandchildren.  It was all smiles, laughter and anticipation.  I silently wondered if any of the other families had prepared so methodically. 

After we finished eating, the Conductor came back around and did the ceremonial ticket punching!  Both guys recognized the connection to the book and slowly  glanced over their tickets as he handed them back to them, each symbolically punched with the initial of their first names.  Jake was especially cheerful with a permanent smile plastered across his face.  I could tell Joe was a little less sure about the unknown as he reached for my hand.  I could feel his hand trembling, although he was outwardly holding it all together.  He focused intently on his DVD player while he munched on French fries from his lingering plate.  I stayed calm but noted his uncertainty.  I noticed all of the other children around us were hopping around, laughing and generally trying to pass the time until the “big man” would come.  They knew they needed to be good to reap the full benefits.  Jake and Joe had no idea about such things.  I was truly thankful that they were generally good, except when their bodies or brains directed them otherwise.  Today was not one of those days.

The train made a jolt and came to an abrupt stop which shook Joe into further uncertainty.  He looked at me for direction.  I reiterated what we were doing, and assured him that he was ok and safe.  After a moment, the train continued forward, only at a slower pace.  Joe looked around for some sign of continuity.  Then, almost as fast as I could even begin to respond to his uncertainty, we were traveling through a world of Christmas lights and little scenes of a village.  This had to be the North Pole.  The entire population of the train was all focused on the beautiful lights and attempts to get a photo.  This came at the perfect time.  We waved at Elves and then at Santa Claus as he stood among the lights.  Again, the train stopped, assumingly to pick up Santa.  We remained parked for a couple of minutes in a calm state.  Part of the fun was that there were young women posing as Elves on the train to entertain.  They kept the younger children busy with games and songs, then they read of “The Night Before Christmas” a mere 2 feet from our table where Jake and Joe could observe.  All of the sudden, they announced that Santa would be in our passenger car next! 

I lifted one ear of Joe’s headphones to tell him that Santa would be coming soon.  I asked him what he was going to give Santa, and he replied, “This”, holding up his carefully prepared envelope marked with the words, “Santa”, on the front.  Jake was also ready gauging from the look on his face and his constant gaze at the door.  No sooner had I finished my reminders and there was Santa.  He entered through the door at a slow, methodical pace, greeting even the Elves.  Joe was first and nearest to the door.  Joe turned around quickly when I pointed since he couldn’t hear with his earphones on.  He looked back at me with a gasp!

Santa looked exactly like I had imagined he would.  He was about 5’11” tall, and had a firm, upright stature.  He did not rush in.  He approached very calmly by first just looking at Joe and asking what his name was.  Joe didn’t respond, so I told Santa his name was Joe.  He said, “Hello Joe.  What do you want for Christmas?”  Joe immediately held out his envelope.  Santa carefully opened it, and read the contents.  “Doodlebops, eh?” he said. 
To my surprise, Joe said, “Yeah!!” Then, Joe pointed to the paper, adding, “Bops!”  Santa held out his hand to shake Joe’s, and Joe took it.  Santa reached in his basket and handed Joe the symbolic bell.  Joe immediately rang it loud and clear.  It was really magical for this Mom. 

Then, Santa moved to Jake.  Jake was at the ready and held out his envelope before Santa even asked his name.  Santa took the envelope, looked at Jake and asked, “What’s your name?” 

Jake said, “Jake!” 

“Well, hello, Jake!” he said.

Santa proceeded to open Jake’s envelope and see the four photos of Mister Rogers’ DVDs that had been chosen as his special wishes.  Santa ho-ho-ho’d while Jake squeeled.  Santa handed Jake his bell, and he cupped it in his hand ever so gently.  Life was pretty good at that moment.  Santa carefully handed both letters to his Assistant Elf and wished us a Merry Christmas while he held my hand, then he was on to greet the other children. 

At that moment I could feel tears welling up in my eyes.  I took a drink of my water to dam them back.  I smiled at Chris who smiled back at me.  He knew it was rare to see me cry happy tears.  It wasn’t long after that that we arrived back at the station and disembarked the train, made our way to the car and returned to the hotel for a restful night’s sleep.

Chris and I reflected on the entire day and how amazing it was—how magical it was.  We had received the one wish we had been wishing for for years—a special memory to cling to. 

Suffice it to say that this whole experience will likely become our new annual tradition.  I know that now that we’ve done it and done it successfully, the next time will be an even bigger joy.  I look forward to it.

Even though I dislike the whole build-up to the holidays, and I cringe at the thought of spending two months of every year preparing for one day, I would prepare for this one day—this one memory—all over again.

From our Neighborhood to yours….We Wish You a Very Merry Christmas and Happy Memories to Cling To!!!!

To learn more about me, Fragile X and my scholarship fund, please visit my website at http://rogersneighborhoodfxfamilyfund.com/

Through Thick and Thin

A High School Senior moment

I am a true believer in the theory that things happen for a reason. As Chris and I celebrate 35 years of marriage, and 43 years since we met, I feel truly blessed. Knowing that way back then, at such a young age, I had the power to elicit my own future..... This is an excerpt from an unpublished chapter that I wrote for my book "Becoming Mrs. Rogers" (which is now available on Amazon). In reality, this WAS the beginning...

Some people think that life begins at conception; others think it occurs at the moment of birth. For me, life began in the 7th grade. Mrs. Johnson’s 7th grade French class to be exact.

It was the first day of class following holiday break in January—2nd term of 7th grade at Creighton Jr. High. That’s what they used to call Middle School. I had just returned from 2 weeks of Christmas break, during which I took my very first plane ride. My Mother’s parents lived in Detroit, Michigan, and we hadn't seen them since we were babies. Money for plane tickets was not something we had, so Grandma footed the bill. She really didn’t have it either, but she made it happen to see us.

In January, as I walked into Mrs. Johnson’s French class, about to decide where I should sit, I saw my girlfriend Bridgette waving her hand. I took the seat she had already saved for me. The desks were arranged in 2 groups, both facing each other toward the middle. I sat on one side, and he, I saw him right away, was on the other. I didn’t know him! I wanted to know him; I knew that. What was his name? I asked Bridgette if she knew him. She said he lived in her neighborhood, and his name was “Chris something-or-other.” He seemed a little bit shy. I don’t think he noticed me at all, but he became the reason I looked forward to French class.

A few boys had caught my eye before the holiday break, but since discovering Chris, they were no longer on my radar. Honestly, they hadn’t really noticed me anyway, because I wasn’t a jock or a cheerleader or a freak or popular; I was just me. I had my select few girlfriends; both were neighbors and as different as day and night, so the three of us didn't necessarily hang out together. Lisa was my closest neighbor. She lived with her mother, stepfather, and sister. Her mother was expecting another baby, so responsibility was Lisa’s middle name. Candy was my other girlfriend, and she lived 2 blocks further but still walked to school the same way I walked each day. She was the youngest child of 3 with an older brother and sister. She was athletic and played after-school sports. This meant I usually walked home with Lisa, but the time together was always pressed by both our beckoning chores at home.

Looking at Chris was a welcome diversion from my home-life. He was so calm, semi-shy, and very cute. He had a cute smile and gorgeous hair, but, oddly enough, his hands were what really intrigued me. They were soft, steady, and gentle. They were nothing like my dad’s, which were calloused, rough, and weathered. He wasn’t super tall, maybe 5’9” or so, which was fine with me at 5’3” myself. I tried not to stare too much, but I wanted him to notice me. When the marching band was doing a fund raiser during lunch hour, I used my $1 hot-lunch money to buy Chris a candy bar. I wrote him a little note and held them together as I approached his locker mate. Feeling a combination of nausea and adrenaline, I asked in my sweetest voice if he would be willing to put the candy and note on Chris’ shelf. He balked at first, inciting in me a wave of panic, but he agreed. The note contained just a simple thought, “I saw you in Mrs. Johnson’s class and wondered if you’d like to call me sometime?” Then I gave my home telephone number. I could sense that I'd have to make the first move. I was not shy, and I could tell he was. Math and Social Studies were after lunch, and rather than listening to lectures from Mrs. Dixon on something to do with algebra and a history lesson from Mrs. Brown, I spent the rest of the day daydreaming, hoping, fearing, anticipating—you name it—whether or not Chris would call and what we would talk about.

After school, I rushed home to get my chores done, so I could wait by the phone. It happened to be a night when Dad would not be home until late, which made everything all the easier. Right around 7:00 while I was watching “Love Boat” on my 13-inch black and white tv, the phone rang. I ran to answer. It was Chris!

We talked all the way through “Love Boat,” “Charlie’s Angels,” and into “Fantasy Island.” Chris was the first and closest thing I'd had to a boyfriend before this point in my life. My thoughts were singing! The next day I bought another candy bar and again had his locker mate place it on his shelf, this time he just rolled his eyes and obliged. Again, I raced home to wait for the phone to ring. I didn’t even know the phrase "The way to a man’s heart is through his stomach", but my instincts knew as much.

Chris played basketball on a private team not associated with our school. When he did phone that evening, he invited me to go to his next game with him and his dad. I remember the agony of having to wait to ask my own dad, but he hesitantly agreed, even with only 13 brief years under my belt. Knowing that Chris’ dad would be there, I am sure, somewhat reassured my own father. Chris' dad picked me up at home, and we rode to the game together. As we sat in the backseat of his parent’s car, Chris held my hand tentatively. By the timid way he went about it, I could tell he hadn’t had too many girlfriends so far, either. I was comforted by that thought, and smiled.

I hadn't been to a basketball game before, and it was awkward sitting next to a dad so unlike mine who I hardly knew. The sporadic moments of silence were interrupted by his polite and few questions and my nervous and one-word answers. Either way, it was so exciting seeing Chris play. Even on the court, he wasn't all that aggressive, but I can tell you I didn't pay any attention to the game anyway. For all I know Chris could have been the only player on the court. His 1970’s mid-length hair bouncing as he ran. Whoa! That's what I remember. After the game, his Dad drove me home. Chris was such a gentleman; he opened the car door for me and walked me to the back door of the house. Then, the most exciting thing happened. Chris got the courage to kiss me. My first kiss from my first boy! He still tells me to this day that he remembers exactly what that first kiss felt like. I, on the other hand, tend to let go of such details. After that night, we made a habit of talking on the phone for hours every evening on school nights and several times a day on weekends. I woke up every morning with the best reason to look forward to school! We held hands whenever we were together at school. Although, in Mrs. Johnson’s class we still sat in our same seats across from each other. This gave me more opportunity to just stare and dream. Surprisingly, I still got an A in 7th grade French class!

A few months later, Chris invited me to a rock concert for our favorite band, Boston. My first kiss, my first boyfriend, and my first rock concert! Their self-titled album “Boston” had been played at least 1,000 times in my house since its release. I loved the rhythm, the beat, and especially the words to the #1 hit “More Than a Feeling”. The words were somewhat symbolic to Chris and me. Music was one thing we had lots of in our house. Dad had a collection of over 500 albums, and he didn’t mind sharing. The concert was held at the palatial McNichol’s Arena which seemed so large compared to the two of us small bodies held together by 2 hands. The crowd was phenomenal with everyone seeming older than us. We felt so grown up being among rockers that could actually drive themselves to the concert. In hindsight, and as I struggle to grasp the exact details of this night, it seemed like Boston played on and on and on. They hit every song that we could sing along to, and more. The lights, the smells, the energy were all so magical. Magical because I had my guy with me. I was sad to see it end. After the show, we made our way to the designated pickup spot and Chris’ dad met us. His dad suggested we grab a bite to eat at Denny’s afterward, which was so cool since I had not been up this late in, like, forever!

In junior high there was a late bus for transporting kids that participated in school sports to their homes. I didn’t ride it, but Chris did, but only because he had a class 7th hour; I didn’t so I would often hang out and wait for him. I’d fill my time doing homework, or chatting with other friends that hung out too. Just before the bus would depart, we found ourselves spending a few minutes after school each day, chatting, and sometimes even necking. That’s what they called it back then. The school sat next to a popular creek. Some of the “freaks” went there to smoke, and many others used it as private place to make-out; because it was hidden from the teacher’s view. It wasn't all that private though. Eventually, we made our way down there, and it wasn’t very enjoyable—too muddy and too crowded. Instead of spending our afternoons by the creek, we talked a lot on the phone and spent as much time during the school day together as we could.

After a few months of the telephone routine and few visits to each other’s homes, during a phone call, Chris finally got the courage to ask me to “go together” with him. This was like going steady, only more modern. I do remember this day, March 3rd, 1977. It is still a highly celebrated day for the 2 of us today. Wow! I was so excited! The butterflies in my stomach were in full motion! The true rumor spread like wildfire among all other 7th graders. I couldn’t have cared less what others thought, but I was pretty giddy over having a boyfriend.


The rest is history.....

To learn more about Cindi Rogers, read her full story at Becoming Mrs. Rogers

It’s Never Really Goodbye….

Anyone who has followed my blog or facebook posts knows a little bit about our RV named “Rocket”.  We procured “Rocket” as our fourth RV in 2012 after years of successful trips and experiences with our two sons.  These are not “typical” sons…no.  They were diagnosed 23 years ago with a developmental and cognitive disability called fragile X syndrome when they were both very young.  (For more information go to www.fragilex.org)

Like many years, this summer, we ventured out on a 3-plus week journey that would begin in California, take us up the west coast, project us eastward to Coeur d’ Alene, Idaho, and into Glacier National Park before taking the four of us back home to Colorado.  We don’t’ normally like to travel out of Colorado during the summer months, first, because Colorado is so beautiful in the summertime, and second, because everywhere else is either too hot or sticky for our liking or it’s too crowded!  This year was different. 

July of 2014 was the date for the 14^th International Fragile X Conference in Anaheim, so we knew we had to make a much-desired west coast trip as part of that conference.  We needed to fill in our RV sticker map which only showed blank spots for Oregon and Washington so that the entire lower 48-state U.S. schematic was complete!  For me personally though, I had to make good on my promise to attend this conference as my 10^th and final.  Why you may ask?  The reason is much simpler than most may think.

I remember many of the memories from the first few conferences I attended.  These were conferences packed with the world’s best experts on everything fragile X.  There are doctors, therapists, researchers, and many other parents; each one holding the key information that we would need to go one more day, one more month, one more year as the parents of a child or children with the genetic abnormality.  In the early years, I walked around the conference in a daze just taking it all in bits and pieces at a time.  I tried to go home and remind myself of each tidbit, but often ended up just feeling inadequate to handle all of it.  With each passing bi-annual conference, I grew more and more keen on what I was hearing, what I was learning and how to move forward.  I could tell other attendees were in the same exact boat.  No one felt alone.  As time went by, I could sense when a person I would lock eye contact with was a “newbie” or a “veteran”.  The level of tears usually gave them and me away.  I never wanted anyone to feel alone at this kind of family reunion.  Hugs would be exchanged and a few words of encouragement or support would ensue.  Then, it was friends for life. 

With each conference experience, I learned something even if it was just one thing; a new thing.  I gained more and more confidence in my own and our family’s ability to implement and handle whatever came our way.  We worked hard with experts in our own town to take it one step further.  We tried things and we failed.  We tried things and succeeded.  With each trial, we found ourselves succeeding more and more.  Each success garnered a new “tool” that would eventually make up my toolbox.  Chris, my husband, started to fill in his own toolbox with many of the same tools.  In a shrewd reality, he also possesses the one tool my own Mother describes as, “The war women have been fighting for centuries”….the dad voice.  I’ve tried to imitate it, but somehow it never works out for me.

We use our acquired tools every single day with these 2 boys; methods like “ready-not-ready”, side dialogue, picture schedules and more.  Each tool or method has required years and years of perfection, and still we are learning.  But, we feel as if we have a wealth of information to draw on and live with.  It still takes work each day, but now we are armed with all we need.  This knowledge is plentiful and crucial to our boys’ success.  Proof of this came in a loud and clear message for me this morning.

A bit of background:  After Anaheim, we stopped at several destinations, and eventually found ourselves in Seattle as a part of a planned stop to see family and friends.  During this stay, we got a call that forced Chris to fly home to take care of some business for a few days, leaving me and the boys in “Rocket” in Seattle.  This was not the plan!  I hadn’t prepared myself, let alone the boys for this kind of diversion.  We had to make the best of it in the name of survival.  We never had the occasion for me and the boys to be in “Rocket” without Dad.  On the contrary.  Dad often took “Rocket” while traveling and staying near a work site, leaving us at  home.  I had to figure it out.  It occurred to me, just this morning, that I had never had the opportunity to assist the boys in the shower in “Rocket”.  Never.  It wasn’t intentional, but Chris had always been around, so he did it.  It can be its own challenging routine for me to assist with showers at home, so this would require extra care.  I wanted it to be positive and successful in order to leave the door open for future opportunities. 

“Rocket” is not your typical RV.  She is equipped with everything one could possibly need to live anywhere she will take you, so this would not be a problem.  I pulled everything out of the cabinet that would be needed for showering; washcloth, deodorant, electric razor, and I placed the towel near the shower.  I prompted Joe, our most challenging son by far, for his turn to shower first.  He jumped right up from his spot on the couch and headed toward the bathroom.  I always keep a duplicate visual schedule for showering in “Rocket” mimicking the one we use at home.  I pointed to the visual without saying any words, and then I motioned for Joe to pick out some clean clothes from the drawer.  He went right to it.  Then, I pointed to step one of the shower process which is getting undressed.  This caused him to pause, sit down on the bed and proceed to get into a bag that was nearby.  I waited.  I used my calm voice and stated that it was time to shower and when he was ready he could begin by getting his shirt off.  Nothing.  I waited a few more minutes nearby, and again, stated that it was time to shower (pointing to the visual) and that I would wait until he was ready.  By now, everything that had been in this nearby bag was now all over the bed.  I disregarded.  It was not relevant to what I was trying to achieve.  After about 4 minutes, Joe took his shirt off, pulled his pants and underwear down to his ankles and again, sat down on the bed.  I know…I know…..don’t visualize it.  I ignored and so should you.  I repeated that I would wait until he was ready, but as soon as he was ready to shower we needed to get our pants off and put them in the laundry.  Nothing.  I waited.  The wait time now was a total of 12 minutes, which seemed like an hour.  I puttered with the items on the counter to indicate that I was ready.  Then, I repeated to Joe that I was ready, but repeated when he was ready I would help him.  I asked him if he needed help to remove his clothing.  At that moment, he uttered, “Help”.  I put my hand at his ankle, tapped his left knee to indicate that I needed him to lift his left leg.  After about 10 seconds he did.  I moved my hand to the right foot which then rose and his pants were off.  I handed them to him to put them in the laundry and without saying a word, he did. 

A moment later, I offered my hand to indicate that I was ready to assist with the step up into the shower, and he took it.  He was flapping the other hand and I knew this meant that the routine was causing him some hyperarousal.  I proceeded slowly and methodically.  I asked him to turn the water on.  He did.  We carefully moved through our normal visual schedule one step at a time, taking all the time we needed to get the task done and do it with care.  It was done.  We made it through.  Total time 40 minutes.  Do I care?  No.  Did we do it?  Yes.  Will Joe trust me to help him again?  Yes.  Did he care that Dad was not here.  Yes, but Mom said she would help him and I did.  We survived.  These are the kinds of skills and methods that I have learned over 23 years, at 10 International Fragile X Conferences and with individual consults from the best professionals anywhere.  I know I can persevere.

This knowledge and its implementation is something that I think any parent would do if they needed to.  It’s certainly not something I had a life goal to learn, but it has helped us tremendously in the life we have.  As parents, we do whatever is needed to survive!  This fact alone contributed to my slight embarrassment and overwhelm during the amazing going away party that was given in my honor during the conference in Anaheim.  Some of my dearest friends showed up to give a most wonderful tribute to my time in this fragile X world.  To me, though, it just seemed like a very natural thing.  It never seemed extraordinary or exceptional.  It was just a natural evolution and sharing of knowledge that was meant to make our own life better.  Why wouldn’t I want to pass that on?

The hundreds if not thousands of kind, giving, sincere, incredible, amazing people that I have met and remain friends with at these conferences will not go away.  We will not go away.  The gifts that they have brought us are irreplaceable; the gift of friendship.  It’s forever.  The HOPE that we were given in the early years has blossomed into a pool of cool, refreshing, rejuvenating energy that we try to share with every family we meet.  “Rocket” will continue to take us to destinations where we can meet and share this pool with other families.  WE will continue to need HOPE as we make our way into the future.

Update:  Day #2  Total time to shower Joe--19 minutes.  That more than a 50% improvement over day #1.  I often say that 1% better is still better!  The only steps I really had to duplicate were offering my hand to help him step in the shower.  He undressed himself, picked his own clothes, and moved through the shower routine just like normal.  I went through the basic same steps when prompting, but there was absolutely no waiting.  The downside is that Dad returns tonight and he is back on duty tomorrow.  I will be having a glass of wine :)

A special thank you to Tracy Stackhouse and Sarah Scharfenaker of Developmental FX in Denver for teaching us these invaluable methods that make each day possible.
To learn more about Cindi Rogers, read her full story at Becoming Mrs. Rogers

My "Rocket" Men

Appendix provided in advance to ease your reading experience:
B.A.R.V. – Big A** RV
“Rocket”-The name of our RV
“DDD” – A Food Network program called “Diner’s Drive’-ins and Dives”
Fragile X Syndrome – A genetic developmental disability-for more information, please visit www.fragilex.org

Camping was never a goal for my life when I was young, but fate pushed me to it.  Fate can be a funny thing.  Who knew that it would be my fate to be married to the best guy ever, even though I met him in 7^th grade?  Who knew that we would have 2 boys, and both would be affected by an intellectual disability called Fragile X Syndrome?  Who knew that we would love them so much that we would literally do anything, even camping, to help them have a better quality of life?  Oh fate is an awesome teacher.

Did you ever start out a journey with the intention of learning lessons?  We did.  You see, when you travel by B.A.R.V. you always learn some lessons. Our current B.A.R.V. is our 4^th RV, so we have a little bit of experience. With every RV we've owned, there is something to learn. We know that some lessons are intentional, some are not.  Some are good; some are ones you wished you had never learned.

The unintentional learning comes almost silently.  Lessons learned in an RV are unique; unlike any others; and filling a world of their own.  Like, when I am making my way to the bathroom while the RV is in motion, knowing full well that it’s better to wait until we stop.  I’ve known about my need to pee for at least 20 minutes, but now it’s urgent.  I venture into the swaying abyss.  I straddle quietly over Joe, as he sleeps with his legs outstretched over the aisle of the RV, while it’s moving.  I don’t want to risk touching Joe, otherwise he will wake up, and God help anyone who wakes Joe!  When I do finally make it to the bathroom, I am forced to grasp the sink tightly while I pee, as Chris turns a sharp corner just as I sit down.  These are amazing skills that will carry me for life!

Intentional learning usually occurs by way of a “learned” lesson.  For example, before we left home on this long journey, from Colorado to Massachusetts and all points in between, we are reminded of a recent trip we took to the south.  On that trip, we had invited several wonderful families, also affected by Fragile X Syndrome, to come to the campground where we were staying for a potluck.  One of the young men locked us out of the RV, unintentionally.  So, before we even took off on this trip, knowing we were going to see families and kids, we prepared….we thought.  We have a remote key fob with our RV and we made sure it was secretly placed outside the RV so we could get back in if a lockout occurred.   Is that enough foreshadowing for you?????

It is always the people that we meet and spend time with that make trips in “Rocket” fun and worthwhile.  Paola, KS, folks greeted us with warm weather and hot food from a “DDD” place called The BBQ Shack, just down the road.  We had about 6 families come out and spend some time, including longtime friends, Angie Grantman, Brooke Stack and her family, Christina Murphy and family, as well as Donna Beauchamp and Spouse.  The kids played with “Lulu” our dog, and entertained themselves with food and other activities.  There was a nice playground just feet away! 

Next thing ya’ know, the adults are all outside and we hear a pounding from the INSIDE of the RV.  “Help! Help!”  Uh oh.  It seems that Ryan Stack, 8 years old, had somehow managed to lock himself INSIDE “Rocket”.  Our son, Jake was also inside, but occupied with his computer while listening to youtube with his earphones on.  Ryan began to hyperventilate a bit and cried for his Mom to help him.  My husband, Chris, quickly reached for the fob and attempted to unlock the door, per plan!  We heard the “click”, but the door would not open.  This prompted Ryan to become more scared and more vocal in his request for help.  We continued to try the fob and help Ryan to calm himself.  Ryan’s Mom stood by as I tried to verbally guide Ryan to help himself to unlock the door.  Problem was, I could not picture in my mind what the task needed to be!  Very frustrating.  By this time, the “helpful people” that Mister Rogers always refers to in any crisis, were coming to our aid.  Other campers with their perceived solution migrated to our camp spot. We’ve found that camping people are always nice and helpful.  A small gathered with curiosity. We continued this routine of trying to unlock the door, while Ryan continued to click something on the door from inside.  It wasn’t working.  Now, the neighbor offers to loan us a key that “might” fit.  Not.  “Rocket” has a specialized set of door locks, only available in "spacecraft"of this kind.  Ryan kept saying, “Turn” as I tried to describe what he needed to do.  He was exceptionally calm whenever we tried something specific.  This I found to be quite amazing.  Crying and banging on the door one moment, and focused and calm when we directed our efforts.  Finally, it occurred to me that there was a little window next to the door that required him to “turn” the knob.  I asked him to turn it and to keep turning until it was opened. It finally opened enough for me to reach my hand in, pop out the screen, and be able to touch him.  Ok, we had some person-to-person contact now.  I couldn’t reach the door lock, but I remembered there was another set of keys inside a cabinet above the driver’s cockpit. It would require Ryan to step on top of the driver’s chair and get inside the cabinet.  With direction, he finally did open the cabinet, but he (for some unknown reason) would not reach in and get the keys. THEN!  All of the sudden, we remembered that Jake was inside.  So, we coaxed Ryan into getting Jake’s attention (this is hard to do when he is watching youtube)!  Jake, calmly, got up, got the keys and handed them to us through the open window.

You might think that the lesson learned here was to keep a full set of spare keys outside of “Rocket” for occasions just like this. No. The lesson for me, personally, was to always remain calm.  It would not have helped if everyone was on the same heightened level as Ryan. It also reaffirmed something I already knew (but often need a reminder of); our kids ARE capable.  Our kids CAN do things.  Our kids CAN HELP. It’s up to us to figure out how to utilize their skills to allow them to do it!  It really was an amazing time.  Even with the slight tension of knowing that we might have to sleep on the picnic table outside (yeah, right….not with Joe!).  It all came out ok.  We were all ok.  Afterward, Ryan seemed (maybe it’s just me that saw it this way) to have a renewed sense of himself.  He enjoyed the rest of his time and even gave me a little hug before he left.  It was priceless.

Traveling through 19 states and visiting numerous families also affected by Fragile X syndrome is most often a challenge, even for the most experienced traveler.  It has provided so many opportunities for me to use my much-loved analytical and experimental self.  My pseudo-Cindi if you will.  

Taking Jake and Joe out of their comfort zone always requires a lot of planning on my part, but new places AND new people…super challenging.  People they have never met before, tons of small children, as well as unheard of traffic (Boston) and noises that we’ve never really had to adjust to (boats/ships)….a real experiment.  What I found though, is that they are really going to do their best if we follow some consistent methods.  I still used many of the same picture symbols to prepare their schedules for this trip  I had the best luck using familiar and predictable wording.  It also seemed much calmer when we avoided the “unsaid” stuff. 

For example, when we ate out at a restaurant with wonderful friends like Melissa and Eric Welin, and Kathleen Quinn and Dennis Hazelwood, we were going to a “DDD” spot in Boston.  The layout was completely unknown to me; the environment was foreign so I could not provide much of a plan.  But, it was a restaurant in the mind of Jake and Joe.  We had also looked online at the menu ahead of time, so we knew they would have some of the boys’ favorite foods.  We stuck to those facts.  I printed a quick (Yes, we have a printer in “Rocket”!  It comes in very handy!) picture of the people from Facebook (don’t you love FB?) so we could talk about who would be there.  All of these elements really helped make the evening at the Boston Burger Company really special.

The same goes for when we had the opportunity to visit Joe, Leslie and Nick Garera in their lovely home.  We prepared based solely on what we DID know, leaving out the unknowns.  The boys did wonderful!  In fact, before leaving, Nick claimed they were “his boys”.  What a compliment!

There were several times where we had the opportunity to test the idea of entertaining right at “Rocket”.  We had a wonderful evening with The Butler family in PA, and the Zeleznik family in IL.  We also had the unique experience of hosting 5 families in MA.  Joe, especially, reminded us that he has always been better at coming to others rather than them coming to him.  So, we practiced doing it that way.  Nothing is ALWAYS the rule, or perfect, but in general, this philosophy worked like a charm!   So, whenever someone came to us to visit, we greeted them outside and waited for Joe to come to the door to ask them in.  I found that if I gave him visual and verbal notice ahead of time that someone was coming, also helped.

We have had the opportunity to travel many miles in “Rocket” over the years and have enjoyed many “DDD” ("Diners, Drive-ins & Dives" is a Foodnetwork program) spots as a result.  So, we know that checking them out online ahead of time is the best idea.  Some of the yummy food we see while we watch the show, is not something Joe would ever eat, so we peruse the menu.  It was no different when we went to a non-“DDD” called Zingerman’s Roadhouse with our friends Mary Beth Langan and Ted Coutlish.  It did not matter that it was not a “DDD”, although we really think it should be! Everything was delicious and we had a fantastic evening in MI!

There were several times that we saw the amazing adversity in Jake and Joe.  They were able to really initiate a conversation with others.  When we went to another “DDD” spot in NJ, 10^th Avenue Burrito, with the awesome Fasciano family, we followed the same tried-and-true method of a “known” visual schedule and photo of them.  Having the Fasciano boys, who are 12 and 15, there, really brought out the best in our own boys.  They enjoyed just hanging together and we even managed to get a photo of the 4 boys together.  Everyone was able to hang out a few minutes in the RV afterward, which all of the boys enjoyed.

We had 4 days of just family time during our stay in the Pittsburgh, PA, area.  We visited the much anticipated Pittsburgh Children’s Museum to see the Mister Rogers exhibits, as well as the Heinz Center, where they also have some Fred Rogers memorabilia.  It was nice to get these “high interest” visits over early in the trip to help the anticipation factor, but one thing I learned this time around was to save a few small surprises for the end.  I didn’t do a good job of that, but will make note for next time.  It might help prolong the fun a little bit longer rather than it just be about getting home.

Being exposed to many children, both young and around the same age, opened up our boys’ world to a higher level of tolerance.  They are not around young children very often, and this gave them a chance to learn and us a chance to observe.  We made sure to provide breaks whenever needed and allow them to withdraw at will.  This made it a successful visit.

For me, personally, I was allowed to further my own mission to help other families, during this trip.  One way that I was able to do that is by presenting our story in a presentation affectionately called, “Mrs. Rogers Neighborhood”.  I had the honor of giving that presentation in both the Lancaster, PA, and Sioux City, IA areas.  It gives me a great sense of peace when I can meet other families and tell how proud we are of our boys and their successes.  After the PA mini-conference, I had the privilege of spending some time with 3 other really great Mom’s.  We chatted and shared stories.  It was a nice evening of friends, food and fellowship. 

Following the full-day conference in Sioux City, expertly organized by Tim Geels and his lovely wife Jammie, Nancy Carlson and Brenda Slama, our whole family, along with several others shared experiences and sat together for hours at a potluck dinner, laughing and eating.  The demands were high on all of the kids with the noise, new environment and sheer numbers of people.  All of the kids did wonderful.

As with all trips we go on, the FOOD was amazing. We cannot even discuss a trip without talking about the tasty vittles from each place we visit! From the Cronuts (donuts made from croissants, OMG) hand- delivered by Paula Fasciano, to the delicious and beautiful cupcakes brought by Amy Zeleznik, to the baskets and bags of local goodies thoughtfully provided by Ruth Butler and the Sioux City group, to the scrumptious pie that Leslie Garera served…..it was all amazing! We had to make a 2nd visit to a few of our favorites like DeNic’s in Philadelphia, and Primanti Brothers in Pittsburgh! Nom nom. We love the idea of eating our way through our wonderful country! My waistline isn’t so fond, but it’s vacation!!!

I am constantly reminding myself of how many of these people I would have never had the privilege of knowing had it not been for the Fragile X diagnosis.  In the early years, we were not at all enthusiastic about such a prospect, but now…..our lives have been greatly enriched.  I know I am a lucky person.  I have had great support from professionals throughout our boys’ lives, as well as personal support from many friends.  

As we reflect on this awesome journey, we will always talk about the incredible growth we continue to see in Jake and Joe.  This trip was quite a test!  They passed, in our minds, with flying colors!  It’s been a long road, but I would not trade our fate for anything.

To learn more about Cindi Rogers, read her full story at Becoming Mrs Rogers