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/