Monday, May 18, 2015

Life is Like.....A Car?



I’ve been thinking a lot lately about the incredible number of analogies that exist between life and a car.  That’s right….a car!  Stay with me here while I attempt to explain.

I specifically chose the photo of this car for several reasons.  First, it's a bit battered, but probably still runs--let's hold with that assumption.  It may be a bit slower than other cars, but still makes it to its destination.  It still holds people, but may pose a few sensory issues for some of its occupants.  It's a car. For me, there is a lot of symmetry between this car and my own life.

After our marriage, our first car was equivalent to a put-it-together-yourself model without directions, of course.  We spent countless hours attempting to get it assembled.  It was a work in progress.  Finally, one day, we had it to a point where it was at least driveable.  It could have used some upgrades and a lot of tweaking, but it moved us from point A to point B.  Sometimes, we would move forward two or three miles, only to seemingly go in reverse for one.  This was the first 5 years of our marriage. 

Occasionally, we would veer off of the normal path, but eventually, we made it back to the main road.  We spent, what seemed like brief moments, at nice, relaxing spots in order to rejuvenate from the hustle and bustle of the main road and it’s traffic.  We would sit and enjoy a drink or meal with friends and breathe deep, heavy sighs and be thankful that our do-it-yourself car was still rolling down the road. After a brief respite, we would get right back into the heavy stop-and-go traffic that was our life.  We traveled through uncontrolled jam-ups that resulted from minor to serious accidents caused by those not paying attention to what was going on around them.  We persevered.

As we decided to veer off the straight and narrow path and pursue having a family, we discovered that our exit ramp was extremely long, but eventually we made it to the point of parenthood.

Pretty soon, we had two new, incredibly cute occupants in our car of life. Car seats safely placed, we hit an incredibly serious bump that caused us to deviate from the road we were on…..permanently.  Our new occupants, two sons, were diagnosed with a genetic developmentally disability called fragile X syndrome. 

No matter what analogy you use, this kind of shock will rock your world.  No amount of “service” will cure it or make it go away.  That is true for us as parents. There is no medication or therapy that will prevent this from being a lifelong contender for our sons, either.  Fragile X syndrome is genetic.  There is no cure. There are however, some “maintenance” techniques that can help make our life and that of our children, a quality life. 

My husband and I have spent many years learning and honing these methods and techniques.  We are still learning.  We are still driving and perfecting.  We have learned some of these very methods from our two sons, like patience and how to keep calm in the face of chaos.  Some we have learned from experts in an effort to help our sons; things like a method called ready-not-ready, or when to use a picture schedule (always).   Some things just take time and cannot be prepared for.

Our sons are now 24 and 26 years old, and we have had our diagnosis for 24 years, but there is no set method for preparing yourself emotionally for what this life may bring.  I am fortunate to have a husband that is incredibly supportive, and I to him—that helps A LOT.  We also have our fragile X community, and over the years this has been a pillar of support and hope to keep us upright and breathing.

We have maintained hope through every IEP (most of them anyway), through inconceivable challenges that anyone with “typical” children will never know, and while watching our youngest stand up and walk through graduation with his class at Columbine High School.  These things give us hope that we can overcome anything that comes our way.  But, that doesn't mean that, even though we rarely suffer sudden and palpable sadness due to our 24 years of grieving, that we never do.  We do.

Those old, unwelcome feelings that remind us that life is not fair….that everyone is different….come slowly back to haunt us.  We don’t ask for them, and we try desperately to suppress them.  Oh, how we try.  They are rare, but still smoldering way down deep in the tear-producing glands. 

I remember those horrible, unwanted feelings being more frequent when our boys were young.  Like when a friend or relative had a healthy baby, or when someone bragged (rightfully) about what their child achieved.  I would grieve for what I didn't have. It’s not that I begrudge someone else these joys….I just wanted to experience them, too. 

Don’t get me wrong!  We have certainly had our share of joy, but, not at the same pace and not in the same way.  We have learned to adjust and to savor small moments of joy.  But, now it is different.

It seems to me that all through the school years, and all through the sports and graduation from high school, that I could cope.  I saw our sons’ achievements as closely met, but now, real life begins and the changes and contrasts are stark.

It’s May and this time of year is full of transitions, celebrations and changes.  Many (shall I say most?) of the “kids” that our youngest went to school with are graduating from college.  Five years have passed since that joyous graduation from high school, and the natural evolution of things has come to pass.  Some are even getting married.

Yesterday, we attended the wedding of two of the most supportive, patient and important people in our sons’ lives to-date.  We knew for a full year that it was coming, so it’s not like I didn't have time to prepare.  In fact, I spent the past 3 months sewing a special gift for the bride and groom.  I don’t know why….wait, I do know why I volunteered….it was a phenomenal diversion for me and my damned emotions.  It turns out that one of the Groomsmen requested to have a garment cover for the reception since pasta was on the menu, so the Bride, in all of her kindness, decided that the entire wedding party (all 12 of them) needed one, too!  So, I phoned the Mother of the Groom and secretly arranged to create them. 

I carefully cut my own pattern out of newspaper, chose the fabrics, one for the girls and one for the guys, and set out to get creative—something that does not come naturally for me.  In all of my genius, I decided that each one should have the individual's name on them, but I had no idea how I was going to do this step.  My meager sewing machine is not capable of fancy stitches.  I reached out to a dear friend in my very own safe, amazing, fragile X community, Miss Angie.  We collaborated (I listened more and she offered her expertise) and came up with a plan.  I mailed the finished portions of the bibs, as I like to call them, to her; she finished the beautiful embroidery and mailed them back to me to complete. 




All of this time, this three months or so, gave me time to contemplate, to absorb, to learn to acclimate, to accept the beauty of this union, and to grieve my own lack of ever getting to experience it myself.  I grappled with the notion that I will never plan a wedding for my two beautiful, albeit handsome, sons. I will never celebrate the joy of holding a grandchild.  I had to have this time to “keep my motor running in smooth order”.  

It was a most beautiful and joyous wedding for which both guys did attend, thank you very much.  Over the years, part of our learning and coping has been centered around how to make life experiences possible for them even though it takes more effort than I care to share.  It wasn't without planning or forethought or love; but even though these situations can be difficult for them to attend, we did it!  That in itself was a small moment of joy to celebrate.  My husband, too, teared up as his vulnerability was exposed.  The Bride and Groom were elated that we came and that we got to share their special day with them.  Little do they know how much it meant to us. 


Our life will go on the same each and every day.  I now know that it’s a blessing if everything IS the same and not worse.  I have that perspective.  We will keep traveling on this journey of life, on this ever-winding-sometimes-bumpy road, with our loving convoy, in our trusty old car, with the best occupants anyone could ask for…..knowing that it will all be OK. If you pass a post office on your own road, please send gas money.

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

Sunday, March 1, 2015

Success Can Be Measured in Baby Steps (and long stories)


We never found a church we liked when the boys were young, so we never got in the routine of going.  It fell to the bottom of the priority pile.  Why is this significant?  Well, we haven’t had too many opportunities to expose Jake and Joe to the idea of dressing up in church-like clothes!  We also didn't challenge them to attend formal dances during their school years.  I have no idea why, except that it would require us as parents to make it a priority and to spend a wad of time making it successful.  Don’t get me wrong, we HAVE made other things a priority, and our sons HAVE been successful at many things, just not these.

It’s not easy to say that because when one realizes that each of our sons was born with a developmental disability called fragile X syndrome, one knows that being successful at anything can be a challenge.  But, they've done it.  If you need more proof, feel free to read about our life in my book, “Becoming Mrs. Rogers” (click this link for info or to purchase http://www.amazon.com).  There you will find evidence of many years of learning, years of trial and error, and finally, successes.  Dressing in a suit and tie was not one of them.

I received an e-mail on February 5th, giving details of an upcoming event specifically to celebrate individuals with disabilities over the age of 16.  It included a link to the sponsoring church’s website, which gave specific details for the event called “SHINE” on Friday, February 27th.  I clicked on the link that showed a video of last year’s event.  I watched intently taking note of the immensity of this gigantic night!  Knowing that we have been able to use videos to help prepare Jake and Joe for different kinds of transitions in the past, made me think how brilliant it was of this church to post one!  There was a live band, performers of every kind, photo opportunities, free prizes such as hats and glow sticks, food, snacks, and games.  Just watching it on video gave me anxiety to even think about the possibility of Jake and Joe attending.  I began to roll over the images again and again in my mind.  The logistics of even an attempt at Joe, especially, taking part in such a supposed-to-be-fun event caused me to take a deep, labored breathe.

If you have never known someone with a developmental disability, particularly fragile X syndrome, you might not know how difficult transitions can be.  You might not also know that strange places, strange people and strange or unfamiliar activities can be hard…..even terrifying for them!  I knew this.  Even things that most find simple, like new clothes or shoes, can be extremely hard!!  Jake, our oldest, can be persuaded…but our youngest son, Joe….not so much.  His own body prevents him from taking part in some opportunities that others would find fun!  He will watch from a distance sometimes, but become outwardly upset because (we speculate) that he really WANTS to do them, but physically cannot.  His face will turn red, he will verbally begin to perseverate using words such as, “No!” or the ever-popular, “Scared”.  We have tried, with the help of experts, to provide him with the skills over the years to allow him to self-cope.  Doing this has not been easy, but it’s surely been worth it.  Over the past five years or so, we have seen him take part in several new and exciting experiences.  Read my other blogs to gain further perspective

I decided to talk to my husband, Chris, about his thoughts on attempting this party.  We talked about the fact that neither of the boys had any dress-up clothes so I would need to procure those.  Small details.  We agreed that this would require us both to operate in the standard methodical approach.  We would need to plan the day of the event carefully, and prepare the normal visual schedule to inform the guys on what was going to happen.  This was our normal daily practice, so it would not be new.  In fact, Jake and Joe use a visual schedule every single day at home and at work.  From past experience, we knew that the event would be totally unfamiliar to them, and that the environment (the church) would be a new one, too, so anything we could do to prepare them would go a long way to making it successful.

We talked about what the next step would be.  I suggested that we talk to the guys about it, too, to include them in the discussion.  They are adults after all!  We could show them the video and ask them if they want to go.  Plain and simple, right?  Right…..So, that evening, three weeks to the day before the event, we waited until we were all seated on the sofa in a comfortable state to pose the question.  I explained that there was a “party” coming up where there would be other “kids” as well as “friends” of theirs, then asked if they wanted to go?  They both answered with a resounding, “Yeah!”  I clicked on the video so that they could see what it was like.  I used key words that were positive words, such as “party”, “kids” and “friends”, but pointed out that all of the people in the video were wearing “party clothes” like a jacket and tie.  This was a new phrase.  I also noted that there were no jeans and no sweats at this kind of party.  Chris reiterated what I was saying.  The boys listened and watch intently.  Then, I asked if they still wanted to go?   In a much softer tone, they both still said, “yes”.  I let them know that I would put the date on the visual calendar and we let it rest for the remainder of the night.

The next day, I set out to work.  I went to a discount department store and guestimated on sizes for slacks, button-up shirts and jackets.  I even bought two ties; one bow tie for Jake and one regular tie for Joe.  I had no idea if we would even get the ties on them.  Then, I returned home and created a visual schedule that included a practice try-on each weekend for the next 3Saturdays, and then added a picture of party on the 27th.   

The next day was Saturday and I was ready to have both boys try on the clothes I had purchased, hoping that they would fit based on my guesses.  Jake was first, and easiest.  He was excited about the “party” and said that word often.  I asked him if he was ready to try on the new “party clothes” I had hung in his room the night before.  He said, “Yes!”  The whole process took about 10 minutes from start to finish, with the pants being way too long, the shirt being way too big, and the jacket being too small.  I made notes and rehung the clothes for return to the store.

Later in the day, Chris and I double-teamed Joe, asking if he was ready to try on “party clothes” (the new term we had adopted to differentiate these garments), pointing to the visual schedule as a reminder.  He, on the other hand, said, “No!” shaking his head fervently and exhibiting a shivering lip, which was never good.  Chris and I remained calm, showing him the visual guide and reassuring him that after we tried on these clothes, he could put his sweat pants back on.  He was not convinced.  He repeated his, “No” and paired it with an, “I scared”.  We reassured him that we were here and he was safe.  We waited.  I said that I knew he wasn’t ready, but that when he was we would help him try on these “party clothes” and then we could replace the sweats.  He bit his own hand.  This is always a negative sign, too.  Chris and I looked at each other and motioned to remain silent.  We relaxed.  We waited.  Time ticked by with repeat phrases and repeat responses.  After a few minutes, tears were added to the mix.  There had been no progress in even removing the sweats in order to try the slacks on.  I stepped further back and Chris remained the central force.  Chris asked Joe to stand up off the bed so he could help get the sweats off.  Joe complied, but hesitantly, still crying softly.  Chris reassured that he would help and that Joe was safe.  Chris held up the slacks.  Joe sat down, now just in his underwear.  Chris asked him to lift one foot.  Joe did.  Chris started to slip one pant-leg of the slacks onto Joe’s leg.  There was a bit of hand-biting.  Chris put the second pant leg onto Joe’s other leg.  After several minutes, Joe finally stood up so that the pants could be pulled up, but as soon as that happened, the tears resumed and Joe fell backwards onto the bed like a mummy.  It was like a wrestling match in slow motion.  Chris simply attempted to button the top of the pants and then realized that the pants were both too small and too short.  Off they came!  Sweats were replaced and all was right in the world once again.  Total time elapsed:  50 minutes.  Chris and I breathed a sigh of relief that step one was done.

Jake’s level of excitement was so positive that I decided to take him with me back to the store the next day.  He waited so patiently as I chose items to try on.  We went together to the fitting room, and he tried on 3 pairs of slack, 2 shirts and 2 jackets.  He was set up with the full outfit, and looked so incredibly handsome.  One down, one to go.  With the notes I had, we purchased everything needed for a second trial run with Joe at home, too.

The following Saturday was try-on day #2.  This time, Chris attempted the pants a second time.  I listened from an adjacent room so that I could gauge the outcomes.  I heard minimal grumbling and verbalizations, but the slacks were on, confirmed to be the correct size, and sweats were replaced.  Success on a small scale!  Total time elapsed:  15 minutes

Another entire week passed and it was time to proceed with attempt #3 which hopefully, would include the button-up shirt.  Again, Chris flew solo, waited, and after a mere 5 minutes, the shirt was on, but not buttoned.  Joe expressed his dislike quickly, so we complied.  Chris held the top button closely just to make sure the fit was appropriate, and it was.  Big sighs were all around.  The following Friday would be “P” (for party) day.  We agreed to say nothing the entire week so that any anxiety would be abated.

In the meantime, I had a meeting with our favorite experts, Tracy and Mouse from Developmental FX here in Denver, Colorado.  I mentioned our journey through this experience, and they suggested that we have a transition item ready for Joe to take into the event and give to his friend, Daniel.  The day before the party, I put a DVD of a movie I knew Daniel wanted to see into a large envelope so that it was ready.  Then, I prepared the visual schedules for Friday afternoon.  Here is what it looked like:













No matter how anxious Chris and I were, the day came anyway.  We agreed that we would shoot to leave the house at 3:30, drive 1.5 hours; get to Chili’s and have dinner then arrive at the party a little after the initial start time of 6:00.  That was the plan.

At around 2:30 p.m. on Friday, February 27th, Chris and I were outwardly focused on being relaxed.  The clothes were pressed and ready.  My dress was laid out and ready.  Nothing else could be done to prepare. 

The first step was to show the guys the visual schedule and go through it verbally with them.  I used simple words that were known to them.  Then, I asked if they were ready?  Jake, of course, said, “Yeah!”  Joe simply skipped away.  I was thankful there was no grumbling!  The guys adjourned to the back of the house and began to get showered.  I stayed in the front of the house, but could hear all of the preparations going on.  I played Solitaire to occupy my mind.  I heard Chris talking to Joe about his own clothes, what he was going to wear, and laying them out to get dressed.  Then, calmly, he showed Joe his clothes, reminding him of each piece as it related to the visual schedule (which was also with them in the back of the house).  I heard Joe say, “Cool.”  There was a calm exchange of words going on between Dad and Joe as they talked about each piece of clothing.  Dad was so patient.  Joe would express small words of uncertainty, and Dad would respond with, “You are safe and I will help you.  Let’s do it this way.”  The shirt and tie took the longest.  After a mere 30 minutes or so, Chris snapped this photo of Joe showing his compliance, but not true love:

Chris followed Joe as he passed by me and went on to his computer to have some down time.  Chris looked at me with tears welling up in his eyes, giving me the thumbs up along with a smile of a proud Dad.  I spoke softly saying how handsome Joe looked, and surprised that the tie was actually on.  I could feel tears welling up in my own eyes, but I choked them back since I had already put my makeup on!  I didn’t want my mascara to run!  I smiled and motioned for Chris to look away from me. We both knew the effort it took to get to such a silly point of reward. The final step before we left was to show Joe the DVD that we had placed into an envelope for Daniel.  I said, “Daniel wants to see this movie, so can you take it to him at the party?”  That gave Joe some real excitement!  He grabbed it and headed to the car.

The weather was very cold and cloudy as we drove the long distance to the Chili’s that was located a short 1 mile from the church where the party would be.  The mood was relaxed, but Joe had a bit of flush in his face which meant that he was not 100% relaxed and still harbored some anxiety about the whole night.  I made a mental note of it, but remained calm.  The Host seated us at a booth.  We all sat calmly.  Joe proceeded to open his backpack and get his earphones and music out, which was his standard practice.  We had a leisurely meal, paid and got back into the car.  I did a quick point to the visual reminder so the guys would know what was next.  Joe was verbally anxious, saying words like, “No”, “I’m scared” or “Are you ok?” , all of which were indicators of his uncertainty at such a new experience.  Chris and I both reiterated that Joe had the DVD to take to Daniel.  Joe held it up, and then whacked Chris on the head in the seat in front of him.  We ignored it.  We parked the car and asked Joe if he was ready.  Initially he said, “No”, but shortly after he said, “Ready” and got his jacket on and exited the car.  Jake was more than ready and could not wait to get out and go in.  We stayed together. 

There was a short line waiting to get into the venue.  The process to enter the church was for guests to walk a long, carpeted path underneath a tent that was planked with cheerleaders yelling and waving pom-poms.  Chris and Joe walked quickly ahead of Jake and me.  The temperature was in the single digits outside and everyone was shivering outwardly.  Upon his arrival at the beginning of this procession, Joe immediately began to raise his arm, grasping that envelope with the DVD in it, and whack Chris on the head, the shoulders and arm.  There was nothing I could say or do to assist, but we made it through the line at a record’s pace.  We were finally inside!  The noise level was amazing.  Jake seemed unfettered by it all, but looked left, right and all around.  It was difficult to even stay together with the number of people moving from every direction all around us.  I looked for a spot where we could park and help Joe get himself organized.  There were signs for games, dancing, food, photos, restrooms, and gift bags.  Chris was doing an amazing job of staying calm and alert.  Joe followed right behind him as we kept moving in an attempt to find a spot.  Finally, I stopped and asked someone (yeah, it’s a woman’s job to get directions).  She kindly directed us toward a set of couches where we could just sit and take it all in. 

Chris and Joe were happily placed, so Jake and I wandered all around.  We saw friends we knew and chatted for a few minutes (I did the chatting—Jake just watched).  We stood in line and had Jake’s photo taken (I had to be in it, too) with Batman, or as Jake would say, “Man!”  We wandered back toward the couches and got a thumbs-up from Chris, indicating that they were good, so we wandered on.  Jake wanted to check out the game area.  He had never been to such an active event where there were lines everywhere.  The volunteers that manned each and every part of the event were fabulous.  They were helpful and they knew how to interact with all of the guests.  Jake saw one game booth where there was a “Whack a Chicken”, and he began to laugh uncontrollably at others playing the game.  The object was to place a rubber chicken on one end of a miniature teeter-totter, whack the end facing upward with a rubber mallet, and watch the chicken fly into a bucket!  It was hilarious!!  After Jake’s turn, he wanted to stand back and watch others play and laugh!  A few minutes later, we found another such game, but it involved a stuffed Mr. Potato Head, which elicited the same laughter. 

Chris and I stayed in touch via texting, and after a total of 45 minutes, he texted that he and Joe were heading to the car.  He reassured me that they were ok, but that Joe was “Done”.  Jake enjoyed walking through all of the areas, and finally ended up in the huge area where a live band and dancing was taking place.  He didn’t even cover his ears, which was his normal go-to coping skill.   After two full hours of fun, Jake said “Home”, and we made our way to the exit.  Chris and Joe were warm and comfortable in the car with ties and jackets removed and a DVD playing.  The drive home was quiet and calm. 


Chris and I reflected on the evening with sheer triumph and exhilaration.  We talked about the fact that our goal was getting Joe dressed and in the door for 15 minutes, and he lasted 45.  Granted, Joe didn’t really participate in the festivities, but he met our goal and exceeded it.  Knowing Joe, he took in a lot of facts by just observing and being present—those facts that he will remember later on.  Keeping that goal in perspective helped us feel so proud.  Now we know that he can do it!  Our hope is that the next time this event takes place, it will be more predictable for everyone, and Joe will have less anxiety about the whole thing.  Maybe we can even make a goal for Joe to get into the dance hall where he could enjoy the music that he loves.  Baby steps. 

Chris’ sentiments on the way home summed it all up…..He said, “Next time, let’s take Daniel a pillow”.  Great idea!

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

Wednesday, December 17, 2014

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 1st, 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/