Friday, November 13, 2015

A Dream Is A Wish Your Heart Makes

A dream is a wish your heart makes
When you're fast asleep
In dreams you lose your heartaches
Whatever you wish for, you keep

Have faith in your dreams and someday
Your rainbow will come smiling thru
No matter how your heart is grieving
If you keep on believing
the dream that you wish will come true”
~Sung by Cinderella/From the movie Cinderella~
Written by Mack David, Al Hoffman and Jerry Livingston

Yeah, Mack David, Al Hoffman and Jerry Livingston had it just right with these lyrics for Cinderella, didn’t they?  Her life story made these words pretty significant with that fairytale ending.  It tied right into the whole idea that Walt Disney created by saying that Disney is the place where dreams can come true.

Dreams manifest themselves differently for each person.  Before I had children, I had many dreams while I slept that glorified what a life with children might be like.  Sometimes, I day-dreamed about these, too.  Once I actually had two sons, those dreams shifted to a more realistic type of dream, both while I slept and in the daytime.  I am certain they were very different from my other friends’ dreams. Why, you may ask?

To fully understand, I need to give some context.  My family consists of my amazing and patient husband, Chris, of 30 years, as well as my two sons, ages 26 and 24.  My sons were both born with a genetic cognitively disability called Fragile X Syndrome (visit for more info on this), which is characterized by speech delay, sensory issues and behavioral issues.  Chris and I have worked for many years to attempt to master the skills necessary to help our sons learn to cope and function at home, at work and at places like Disney World.  Just as the commercial plug calls out to many, it called out to us, too.  We wanted to make Disney a place where our own dreams could come true.

Let me start by saying that nothing is easy with any kid, but having two sons with special needs has added stress and emotional repercussions.  A place like either Disneyland or Disney World poses special challenges for our sons to just function, let alone have fun.  The crowds of people moving this way and that (and stopping right in front of them) create sensory overload almost immediately.  The constant variation of sounds pose a whole set of other sensory input that helps fill up the proverbial “overwhelm cup” to overflowing.  Standing in line with people moving all around you at a very close range can put their body into a state of perceived pain.  Mom and Dad asking them to wait, wait, wait (for everything under the sun at Disney), requests of them something they often cannot provide.  The added excitement of seeing something they consider a very high level of interest just puts them over the top like a volcano overflowing.  But, I still want what every other parent on the planet wants….for my sons to experience joy on a Disney level.  I want to see them smile and enjoy something they love so much.  The song says, “In dreams you lose your heartaches/Whatever you wish for, you keep”, right?  Well, damn it!  I want that too!

Before I had children, I would dream of doing things with my own kids that I never did myself as a kid.  At the ages of two and newborn we received our genetic diagnosis, and that put a kibosh on many of the dreams that I had.  Over the years, I had to find a way to create new dreams, real dreams.  Of course, Disney, even for my kids with disabilities was a real daytime dream.  In reality, what I learned is that in order to be able to even try to approach something like Disney World, I would have to do some real honing of skills.  It took years, but I worked and worked to learn all I could.  Then, the real first test.

In 2006, we packed up our travel trailer and headed off to Disney World for that magical family vacation in the family truckster.  What I can tell you now is that Chris and I only have one of, what the movie “Home” would consider, permanent memories, and it’s not a good one. The rest we blocked out, leaving us with very little to go on for a repeat trip, except fear. Obviously, I needed to continue to work on my skills.

Disney is the perfect place to test any skills you think you may have and to challenge any others.  One of the skills I thought I had was the ability to plan and prepare.  Thanks to our personal expert, Missy Zolecki, who helped me plan an innate number of details about the Disney experience, I was prepared to some extent. We always travel with whatever the guys need to help them in their sensory diet routine (, like their weighted blankets, and we use our methods religiously even when traveling.  But, like any other away-from-home experience that could be stressful for our sons, I prepared our familiar visual calendars and schedules to help them know the things they need to know to feel safe; what am I doing, how long will it last and what’s next?  Each of these things is usually pretty easy for me to provide, and are usually fairly predictable and fairly accurate. In the World of Disney, I, much to my chagrin, have zero control, and was not able to predict with 100% accuracy. 

Our first full day of park time began with our very first test.  Prior to that day, Missy and I used every resource available and still did not predict that busses would not run between Fort Wilderness, where we parked our 4th RV, endearingly named “Rocket”, to the Magic Kingdom.  No, no, no!  We were then told by park staff that we could drive to Magic Kingdom and park right at the park.  Still not correct.  Yes, we did drive and yes we did park, but no, we were not AT the park.  We still had to take the Monorail to get TO the park.  This was a total surprise to me and Chris, and therefore, a complete surprise to our guys.  Now, when our guys were young, this would be a deal-breaker, but on this day full of excitement to capture the dangling carrot, they took it completely in stride.  When Jake and Joe were young a situation like this might cause an irreparable meltdown that cannot be recovered from, causing us to have to leave.  It did help, as it always does, when Chris and I gritted our teeth and remained calm, acting as if it was all part of the greater scheme in life, while in reality, we starred at each other secretly cringing and rolling our eyes.  Hurdle #1 was cleared.

Having an abbreviated monthly calendar posted in the RV, as well as a more detailed daily visual schedule with us showing what steps we had planned, has always been very helpful for our guys.  It’s helpful for them to achieve their work at their daily jobs, for their chores at home, and for leisure activities they participate in like Disney World.  They are accustomed to it, and most of all, they trust it.  This was no different.  Normally, I use the pictures of things that I am sure of and try to represent the things I am not sure of (as long as I know about them!). The first item I had posted on the visual schedule was to arrive at the park.  The second was for us to go get the infamous Disabilities Access Pass which would involve the guys being present, but waiting off to the side while Mom approached the queue.  Chris and I had planned that they would sit somewhere and perhaps enjoy a small snack while they waited, which was a good plan—until we get to City Hall and realize the seats are all occupied.  Thankfully, we were asked to move to the Chamber of Commerce building to complete the process, and there were a few seats there.  The unfamiliar and uncomfortable Florida heat and humidity were already taking its toll on Joe, our younger son, as represented by his profuse sweating, and we hadn’t even begun the day!  My turn finally arrived to speak to a smiling Disney representative, holding an ipad and asking what she could do for me.  I explained our need and she proceeded to assist.  She was calm and extremely helpful.  In addition to issuing the DAS pass she helped to rearrange the previously created schedule in order to better accommodate our time requests.  Fabulous, I thought.   She then explained that the DAS pass would be held on our older son, Jake’s, Magic Band, the rubber arm band used to hold every detail of our vacation, and worn by each one of us.  We set off with smiles hoping to resume our visual schedule and capture that prolific “magical” feeling everyone in our midst was seeking. 

The first event I thought the guys would want to see was the Buzz Lightyear Space Ranger Spin ride.  Though they had never really ridden a ride, it was described as a slow moving, spinning ride, and seemed like a good possible first-time ride goal. Buzz and anything “Toy Story” are high interest so we thought we’d try. We approached the “Fast Pass” line, scanned our Magic Bands on the electronic band reader and joined the other anxious waiters for our turn.  The line appeared to wind around and around.  People stood close to one another as the heat in the air rose and fell.  No one was moving.  Not at all.  The line just stood there.  After some time that felt like an hour but was probably like 10 minutes, a voice echoed from the loud speaker alerting waiters that “This ride has stopped and will resume running in just a few moments”.  We waited.  We stood.  Joe sweated and we wiped his head, neck and face.  Chris and I stayed calm, but we looked at each other with an inquiring look on our faces.  Joe became more and more agitated as the minutes ticked by.  The line still wasn’t moving.  After a few minutes more, the voice repeated the same announcement.  Joe didn’t seem to understand why the bodies around him were not moving and why we were simply standing there.  We asked him if he wanted to ride or go out…he chose go out.  So, we asked a nearby staff member where the exit was, we moved toward it and we exited.  Chris and I sensed that this first step was not a success, although we considered the fact that Joe was able to communicate his needs a win.  Visual schedule ride #1, skipped. Hurdle #2-crash and burn.  We stood a moment to get our bearings on the park map and moved toward the next visual—Pooh Bear. 

The heat and humidity continued as the sun bared down on all of us as well as every single person who moved around us.  We plodded on through the crowds to Pooh Bear.  When we arrived to see the Hundred Acre Wood that we remembered from our visit in 2006, it became evident that this would not be the Pooh Bear we remembered.  There was new “Fast Pass” line and “Stand By” line, but no little place where you could just walk up and touch and see the Hundred Acre Wood.  We decided that standing in another line to ride an unfamiliar ride probably would not be the best idea for Joe. Chris and I did a little, what we call side-dialogue (a method where we talk to each other about something we really want the boys to hear) saying, “Boy, it looks like Pooh Bear has a really long line.  I don’t think we want to stand in another line, so I think we’ll skip this and go on to see Beauty and the Beast.”  No outward response from Joe. We had to walk on, skipping another item on the visual schedule.  Joe was visibly agitated now as exemplified by his red face, but holding it together.  We ducked into a store to distract, spent some money and warded off some of the anxiety over the skipped visuals.  The next item on the schedule was “Enchanted Tales with Belle”, so we headed for it.  The “Fast Pass” line was clear!  But, we had to wait…..more waiting.  There was literally no one in front of us, but there was a nasty rope preventing us from entering the attraction.  Joe was mustering every ounce of energy he had to keep his cool.  Chris, Jake and I stood back to give Joe some room and allow him to move around.  People began to line up behind us as the show time neared.  Finally!  It was time to take down the rope and allow us to move into a room where we would all gather and begin to hear the story of Beauty and the Beast as told by Belle, whom both guys really liked.  The room became more and more filled.  We chose a place at the back of the room against the wall so that no one was behind us.  The room, thankfully, was air conditioned, but as the people filed in, this became less evident.  Joe moved from side to side.  He was still sweating profusely.  He bumped Chris and bit his hand—always a sign that he was nearing his that eminent lava-flowing stage.  I mouthed the words to Chris, “Should we exit?” He nodded, no.  As I glanced away at Jake, I felt Chris touch my side.  Joe had bitten his shoulder.  At that very moment, the next set of doors opened and the crowd moved in to view the attraction.  Chris motioned for Jake and I to go, so we followed the crowd.  I glanced back, bending at the waist to see Chris asking a member where they could exit.  I was sad.  I knew from experience that all of this might be too much for Joe.  Our 2006 visit had left that permanent black mark in my memory.  Here we were again feeling like dog doo at the fun and happiness we attempted to instill upon him.  Why is it that the happiest place on earth, as it’s trumped to be, is NOT the happiest place for him?  A lump formed in my throat.  I was struck back to reality as Jake squealed with delight at the voices and music sung by the Wardrobe character in front of us.  He was having a ball!  We were escorted into the facsimile of a library from the movie scene, where Belle made a grand entrance and Jake was in awe.  He made noises far and above anyone else in the room, forcing a few quick glances in his direction.  I ignored those out of habit.  I really didn’t care because I knew he was in sheer Heaven at that moment.  In a very un-Jake-like moment, he later rose to wait in a short line just to hold Belle’s hand.  Such delight.  Tears stung the backs of my eyes, but I resisted in order to exhibit only a proud smile.  As I glanced around the room at all of the little boys and girls in the room with their quiet, adoring parents, I felt a pang of jealousy.  These kids were smiling, yet alert and quiet.  The contrast was stark.  Not only was Jake 6’1” tall, he also made a lot of noises to express his glee.  This was all a good diversion to keep my mind from drifting back to Chris and Joe.  Soon enough this momentary joy would end and we would exit and go outside to see what the outcome was.   

As Jake and I filed through the exit with everyone else, both Chris and Joe greeted us in a calm, somewhat relieved manner.  I hugged Chris and asked if he was ok to which he responded, “of course”.  This is why I love this man and consider him to be such a heroic Dad.  At that point, I asked Joe if he wanted to now go see Cinderella.  He answered in a resounding, “Yeah!”, so we walked toward the castle and into another line.  I worried that placing this many demands on Joe and expecting joy might be selfish.  Both guys absolutely loved Cinderella and have enjoyed the movie since they were toddlers.  Besides, what Prince doesn’t love a Princess?  This line was much shorter, and seemed to move at a fairly brisk pace.  The orderly line of people was dominated by little girls dressed in their princess outfits, clinching autograph books that awaited her signature.  We were escorted into a small room where the beautiful Princess Cinderella stood under bright lights with only a photographer present.  It was finally our turn.  Both boys approached her gently, but unknowingly, not quite understanding what they should do.  I encouraged them to shake her hand.  She kindly took one of their hands and held each one individually, cradling them softly in both of hers.  Tears did well up in my eyes this time, but I allowed one to fall as I smiled. I didn’t want the guys to see me emotional as it might disturb their own joy.  The sad feeling of only 30 minutes before was in stark contrast to this moment of calm tenderness.  It only lasted 2-3 minutes, but like a roller coaster, I shifted from sad to an overwhelming feeling of happy in a New York minute.  I snapped a photo for my new permanent memory.  My worries were dispelled.  This was all enough for our first magical day.

That evening, I did what I often do after a situation where I am sad and disappointed in myself; I had a talk with my conscience. 
I said, “Self, what did you do wrong?
Me: “Well, I pushed when I should have pulled. I expected too much after I already told myself that this part of our vacation was for them—not me.  I should have paid attention to the known warning signs and not attempted to push through them.”
Self: “So, what are you going to do differently tomorrow?”
Me: “(Touching my imaginary index finger to my chin) Hmmmm….well, First, I need to revert back to what I know to be proven successful skills.  I think we should plan to do maybe one activity before taking a break, then try another, then a break and see how that goes.  If there are any warning signs, we will halt immediately.  I need to remind myself that this Disney thing is for the guys and to let them drive.  Somehow, I believe that tomorrow will be better anyway since we are planning the day at Hollywood Studios and there are some high interest things there.  AND, my experience tells me that day two is always better.  In fact, I am going to make a note that perhaps if we come again that we should skip the Magic Kingdom altogether.  It’s too crowded for Joe.  Ok, that’s the plan.”
Self: “Ok, then let’s forgive ourselves and move on, shall we?”

Also that same night, as always, I laid out the detailed visual schedule for day 2.  It included a first stop at a resort character breakfast that featured Mary Poppins (one of Jake’s all-time favorites), Pooh and Tigger, then on to Hollywood Studios.  We had plans to see the Muppets 3D, have lunch and then go to the Beauty and the Beast on Stage and do some shopping.  Chris and I agreed that no permanent damage had been done and that both boys seemed excited about tomorrow.

That excitement continued as they woke, dressed and loaded into the car to head to the Grand Floridian resort.  We were seated immediately upon arrival at the restaurant.  As we glanced around, Jake immediately gasped and pointed at his ever-favorite Mary Poppins as she passed through a door for an obvious break.  We managed to get him something to eat before she re-emerged and approached our table.  I explained to her his life-long adoration for her and the movie while I rose from my chair next to him and motioned for her to take my seat.  She moved effortlessly into my chair, took Jake’s hand into hers and proceeded to speak quietly to him.  As is common for those with Fragile X, Jake would not look directly at her, but she held herself close to him and spoke gently, calmly and quietly.  It was so touching and so incredible to witness.  Even though Jake could not show his joy and adoration they way others might, I sensed a great deal of love and contentment in his world.  He had waited so very long to finally get to meet her.  We had chased her all over Epcot in 2006 and never had the pleasure of finding her, but here we were….nine years later.  She was sitting right next to him.  He showed her his copy of a mint-in-box “Mary Poppins” blue ray and she smiled.  He showed her his visual schedule with a special picture indicating that she was a part of his day.  He touched the picture gently and repeated, “Ponnnns”, which stands for Poppins.  Life as he knew it could not get much better. We all enjoyed the breakfast, and Joe loved seeing the characters, too. 

Next, we drove the car directly to Hollywood Studios, entered the park and moved quickly to the Muppets 3D feature.  Joe laughed outloud and smiled widely as we entered to see all things Muppets!  He had a ball!  We spent some time shopping at the store with all things Muppets, and he was finally content.  He proudly carried his bag of goodies as we basked in our joyful glow.  He absolutely loves the Muppets so this made his day.  We had seen this attraction before so it was quite predictable and the lines were minimal.  In fact, Hollywood Studios as a whole was way less crowded than the Magic Kingdom had been, which was a relief.  We, of course, did some shopping to spend some of the guys’ hard-earned money on frivolities, then we made a plan to sit down and have a nice lunch.  Everyone was intact and content. 

Whatever image or expectation I may have had for our visit was certainly exceeded.  Yes, there were bumps.  Yes, we could have done it differently. But, one thing Chris and I agree on…knowing that 1% better is still better….this time as compared to 2006 was 75% better.  We have learned (although sometimes we forget) that things do get better.  When we take a moment to really reflect on some of the things we never thought the boys would do like sip through a straw, or talk, or sleep through the night, or wear underwear…ya know, small things…..they ARE doing those things!  When we stop and think about the things we never thought we’d get to do as a family, like…….say, leave the house…..we ARE doing those things.  Having an RV like “Rocket” has given us these opportunities.  Having incredible people around us to help us overcome some of the difficult parts, like Tracy and Mouse, these are real, tangible achievements!!!  We need to grant ourselves a break.  Screw guilt!  Screw grieving! Doing Disney for us is one of the most challenging things we've done, but we succeeded in making it overall a positive thing for the guys.  We DID this Disney thing!

No matter how your heart is grieving
If you keep on believing
the dream that you wish will come true”

I like to think these words really are true.  We learned some new lessons which we will note for next time.  Yes, there will be a next time and it will be even better!  

Note: If you would like to read more about Cindi Rogers and her family, visit  Here you can learn more about her book Becoming Mrs. Rogers: Learning to Live the Fragile X Way and about the Rogers Family FX Family Fund.  In fact, the annual fundraiser is going on now to raise funds to help other families like hers obtain scholarships to attend the bi-annual International Fragile X Conference, where world-wide experts gather to help educate those affected by Fragile X Syndrome.  Won't you help us help others???

Tuesday, September 8, 2015

A Small Slice of Heaven Amidst a World of Change

I openly admit it…I don’t like change.  In fact, I don’t know many people that do!  But, it is a daily fact of life that I have had to find a way to deal with.  One of the ever-changing things in my life has been my career.  If you’ve read my book (Come on, just read “Becoming Mrs. Rogers”!, then you are aware of some of the facts surrounding these changes. 

To sum it up, I spent 20+ years as an Executive Assistant working for high-powered corporate gurus, wearing suits and panty hose in the Monday through Friday, 8:00-5:00 grind, while, my husband, Chris, spent more than 30 years honing his skills as a commercial plumber.  Then, in 2009, together, we formed our own commercial plumbing subcontract company.  It’s a complicated title that really means we do all of the plumbing for a General Contractor, specifically on commercial jobs like restaurants and new commercial buildings. 

Not that it’s terribly interesting, but just to provide a bit of background…..We’ve had the privilege of working for one specific General Contractor that, in the past, did a lot of the building for new McDonald’s Restaurants.  This allowed us to hire a few employees, and work at a steady pace for several years.  It wasn’t hard for me to move from Executive Assistant to Bookkeeper, as they are quite similar!  It did take me some time to understand all of the details surrounding plumbing, although I had been married to Chris for 25 years at the time, and knew a lot of the lingo and could identify parts, etc.  Around the middle of 2014, though, McDonald’s nearly ceased building any new restaurants due to the flux of business capital (money).  This sent a wave of changes coming our way.  

We have been somewhat used to change since the birth of our two sons, who were born with a (SURPRISE!) genetic cognitive disability called Fragile X Syndrome.  We knew nothing about it until we got the news when our oldest was two-and-a-half and our youngest was a mere newborn (again, read the book—it’s a detailed account of these awesome guys).  This is the kind of unexpected change that rocked our world!  In hindsight, it kind of seems petty to even blog about a job change with all of this uncertainty going on, right?  Well, hang on….this is relevant.

So, last fall, Chris and I discussed it, and we decided to take a leap of faith and pursue work on Love’s Truck Stops with this loyal contractor since the future of McDonald’s and our bread and butter, were gone.  What does this mean?  Well, if you’ve done any traveling, you realize that Love’s Truck Stops are built on major interstates, miles apart!  It’s good work, but it would require Chris to travel in order to do the plumbing on this kind of job.  We had a company meeting, over a nice dinner (you can do this when you own your own business), and decided that I would become a Plumber.  I had little experience, but I was willing to learn, AND I slept with the boss, which was an added bonus.  I had a base of knowledge, but Chris had 30 years on me.  Also, the fact that he is not the most patient teacher would require us both to adjust. 

We did a few smaller jobs near home to fill the immediate void and bring me up to speed, and then we took our first real contract on a Love’s away from home.  Among the many benefits for our family is the fact that we own a little RV named “Rocket”.  This makes traveling with two young adults with Fragile X Syndrome more doable, but would still require me to be extra organized in order to make is successful for them.  “Rocket” has been a God-send over the past many years as we’ve traveled to all of the lower 48 states for pleasure, visiting other families affected by fragile X syndrome along the way!  This kind of travel has allowed us to meet the specific needs of our sons who need structure and routine when exposed to any kind of transition.  Why not use it for yet another transition—that of work? 

I began the same way I had for any other transition for our sons, planning, preparing and praying.  I spent the week before our departure planning a menu, and prepping meals for an estimated 14 days away.  There is no way that I wanted to work all day in the 100 degree heat then prepare a nice meal for our family. So, I pre-cooked things like spaghetti sauce, beef stroganoff, taco meat, enchiladas, grilled chicken and pulled pork to become major parts of easy-to-assemble meals.  Then, I packed fixins’ for other meals such as crockpot lasagna, crockpot meatloaf and a tasty dish I like to call crockpot green chili chicken rice, that I could easily plunk into the crockpot in the morning and we could eat later that evening.  I like the idea of using the crockpot when the weather is too hot to use the oven in “Rocket”.  Now that the logistics of meals were complete, I focused on preparing the guys for a whole new routine. This was also going to be a big change in their lives.

Jake and Joe really live the very best life when we can provide a structured schedule during their day, including recreation, and/or work.  They both hold very good jobs in our home neighborhood, but we had to think about how they could be happy AND productive while our own work required us to leave home.  I also wanted to find even small things that we could do to continue to make their world bigger and allow them to experience new things. This has always been a goal we lived by. So!  How could we do this? 

I pulled out my trusty library of picture symbols that were the language of our sons.  With a very limited vocabulary from a very young age, we have learned to communicate with them via a complex mixture of pictures that tell a story called ‘pic sims’.  This story would at least give the guys a daily idea of what we were doing, how long it would last, and what was next—all important things for them.  Then, Chris, my amazing husband, and I talked about how we could make our sons’ lives quality while we worked.  Afterall, we would be taking them away from their own daily jobs and plunking them into our work life.  As with any trip we’ve taken in “Rocket”, we did some research to find out what would be in the area of our short-term community.  One thing we learned very quickly is that Love’s Truck Stops are often built near very small towns in order to make their presence more viable.  What this meant for us is that there was not much around to entertain us while we worked.  We had to figure this out.  I gleaned some help from my past methods and approaches, especially for our sons. 

The dog, Lulu, and the guys all loaded into “Rocket”, I drove our truck and towed the trailer full of tools and supplies, and we hit the road on our first adventure of working away from our home neighborhood. We decided to camp nightly at the closest RV park in proximity to the job, which was 20 miles away.  To our pleasant discovery, this RV park came complete with a full-sized drive-in movie!  It also had its own homemade pizza and snow cone stand!  We took full advantage of these amenities to help make life more tolerable during our 2-week stay, then it was home for a few weeks, repack, and make our way to the next stop.

The next town did not have a drive-in, but it did come complete with a really nice city park that included a water feature!  We decided to make a plan to pack our lunch each day and take it to the park.  As is with any transition to a new place, we anticipated our first day’s visit would be brief—only about 15 minutes.  We developed a quick, albeit successful and complete routine, for the park that included sit down and eat, play at the water park (not get in) for a few minutes, then walk Lulu around the perimeter.  Our past experience has always been that “the third time’s the charm”, and this park visit was no exception.  The second day we stayed for 30 minutes, then the third day was a full hour.  Other than a bit of relaxation, we had no expectations.

Having no expectations usually means that Chris and I are often surprised, and we certainly were in this situation!  We used to visit parks often when our sons were younger, but had not made a habit of visiting the jungle gyms of late.  It seemed they had both outgrown them.  On day number one, even at the age of 26, and being of limited motor skills, Jake, wanted to go down one of the little slides that were fairly easy to access.  I stayed back and just observed while he approached, climbed the steps and went down, all the while bearing a smile on his face.  Joe, age 24, also independently went over to the swings and climbed on.  I had forgotten how much fun these things used to be.  This park was equipped with an exceptional set of obstacles that included a rocket ship and three really tall slides, but getting to them appeared to me to be a bit of a challenge.  I was not sure if either of the guys could manage it.  What do I know? I’m just a Mom. 

On day number four, I made my way up the first level of steps, then negotiated a curved ladder that was reversed leading to a landing.  I found it to be a little bit awkward, but Jake followed me without hesitation, leaving me speechless.  I never knew he, the one with the most limited of motor planning success, could conquer such an obstacle…but he did.  I was so proud.  He took his time and carefully placed one hand then one foot in front of the other, surpassing each rung by himself.  It was awesome.  I, then, left the landing and climbed another long ladder that led to an even higher platform that led to a choice of three different slides.  Jake, again, followed, picked a slide and went down ahead of me.  This would be the beginning of a new routine that would become each day’s process.  I felt as if we had managed to make his little, but full, world a little bit bigger that day even with something as small as going down a slide.

Joe, too, made huge strides as he tolerated more and more calm and relaxed enjoyment at the park.  Then, there was day 10.  The job site was deserted on this day, but the numerous pieces of heavy construction equipment were still present.  Joe has always loved big trucks, big “diggers” and anything to do with Dad’s world.  Chris asked Joe if he wanted to drive the backhoe?  At first, Joe was hesitant, but within 60 seconds, he was out the door of “Rocket” and standing next to the huge “digger”.  Chris opened its door and Joe climbed up and sat in the driver’s seat.  Chris started the engine.  The door was closed now, so I could not hear what was going on, but the gestures were gentle and calm.  Joe grasped the steering wheel like he owned the world.  Suddenly, the gas pedal was pressed and off they went for a jaunt around the property.  Smiles were everywhere.  After a few minutes, they returned to the area where I was standing, Joe jumped out and bellowed a loud “Hulk-like” sound.  Total man moment.

The following day, we were nearing the end of our work for phase number one on this job (there are a total of three, typically).  We decided to take the afternoon off and see some of the local sites, though limited.  We had heard about one of the most interesting spots, which was a historic carousel.  Those words don’t even begin to describe this “carousel”!  This one was made in the early 1920’s and is #6 in the patent office.  It is all hand-carved wood, with hand-painted panels and animals of all kinds.  There is a tiger, a lion, a giraffe, a prong-horned sheep, and of course, horses.  Our guys had never ridden a carousel, so we, again, weren’t sure what to expect.  I had used the pic sims to attempt to communicate riding a carousel, but the actual riding would be a surprise.  We paid the extremely affordable price of 25 cents apiece, picked our animals and waited for the ride to begin.  The antique pipe organ began to play, and we began to circle at a rapid pace of 12mph, which is pretty fast!  I sat on a goat next to Jake, who sat on a camel.  Chris sat next to Joe and off we went!  We went around and around for the full 4 minutes, feeling a bit woozy as it came to a stop.  All of us enjoyed our first ride on this historic carousel and had fun while doing it!  It was a great day.

We will likely continue to abhor change, but in the face of reality, it is likely that we will also learn to cope.  As our guys have shown us…they can do it, and so can we.  My next really big task is to develop, teach and hon new jobsite tasks for Jake and Joe. They are already very good at following 2-3 step tasks on an ad hoc basis, but I know they are capable of more.  Only time will tell.  It's a matter of figuring out how to do what they are capable of in a safe manner in an environment that is not always safe.  I have faith.  We also know that these kinds of life changes are almost never permanent, but we have resolved ourselves to be happy while enduring that 4-letter thing called work.  I never planned to be a Plumber, but I am content for now to be an integral part of our company working on the front lines.  We feel blessed to have each other and be together each and every day.  Hey!  How many people can say that they got to spend their 30th wedding anniversary working side-by-side with the one they love?  All in a day’s work…… 

Thursday, July 30, 2015

If I Couldn't Laugh, I Might Cry

As I am about to celebrate 30 years of wedded bliss, I am inclined to write down my thoughts on past perspective before I lose my ever-lovin’ memory.  If you asked my husband, he might protest that it’s far too late. Yes, it’s been 30 wonderful years, but I can still look back and kick myself for all of the things I took for granted before we had children; for granted before I was blessed with two beautiful sons that were born with an unbeknownst-to-us genetic developmental disability called fragile X syndrome (more on that later).

So, for those of you that are young, gazing into the eyes of your adoring partner, dreaming about marriage and kids—here is my advice to you.  Yes, I do have the gall to give such advice even though I am not a Marriage Counselor, a Priest or even a Psychologist.  But, my years of foregone experience give me the right to bestow such liberties upon you.

The next time you lay in bed feeling luminous and satiated from the amazing sexual encounter you just had with your husband, relish that feeling as if you may never have it again.  Truth is, once you have kids you probably won’t.  Or as Author Peter DeVries so eloquently stated, “Sex in marriage is like medicine. Three times a day for the first week. Then once a day for another week. Then once every three or four days till the condition clears up.” My reality became that sleep and sex are overrated.  My youngest son didn’t sleep through the night until he was seven years old!  This is a well-known difficulty for children diagnosed with fragile X syndrome.  We know it only as nature’s birth control, asking myself why I ever thought having one child was hard.  You may want to ask yourself how important that satiated feeling is to you, and wipe that smile off your face because it makes me insanely jealous.

You probably have some idea about how much money you will need to save before you start a family.  Perhaps you have a healthy nest egg already.  Well, whatever amount you think you will need, triple it.  You see, fragile X syndrome is carried by 1 in approximately 151 women/1 in 468 men, and affects 1 in 3,600 males and 1 in 4,000 females.  That means that your chance of having a child with fragile X is not a rare one!  If you do have one, you can count on spending insane amounts of money on weekly speech therapy from a very young age, only to have the child’s first word be something like “bitch” as was the case with my oldest.  Needless to say, we increased the Speech Therapy to twice a week.

Have you made the call to Better Homes and Gardens requesting a visit to your perfectly coiffed home?  Well, if blessed with a son or daughter with full mutation fragile X, you might want to renege on that one.  In fact, if I have caught you prior to the acquisition of new, well-appointed furnishings made of high quality Italian leather, then I can rest on my principals.  Save the speech therapy money and buy something just nice enough to comfort a restless baby up to three times a night, and ones that will not cause guilt when you throw it to the curb after it’s been puked and pooped on numerous times until even the dog will not go near it.  In fact, spend a few dollars foofing up the bathroom, because this is the one room you will spend endless hours in.  In my own case, after our sons turned 7 and 9 years old, we had to demolish entire main bath due to waves of water that had made its way to the floor, only to rot out everything all the way through the floorboards.  As a replacement, my husband even contemplated putting a floor drain in the middle of the bathroom to ease cleanup when it necessitated using a hose, surrounded by a concrete floor!  Not the most appealing or most beautiful, but certainly the most practical.  You might also want to keep note of this fact; our main bathroom is the smallest room in the house, but the one place where we all seem to end up at the same time!  We may need to start a new trend in home marketing with words like “roomier bathroom”, or “most-used room becomes the roomiest”.  Please get to work on that right away so that Architects can start to design such models.

As you drive to work today or tomorrow, listening to whatever music you choose, feeling the wind in your hair, relishing a few quiet moments of peace and quiet… may want to record those for later.  Pay special attention to the many moments you have to focus and reflect on yourself or your life.  These will be fewer and fewer with any child, but one with fragile X will add another layer of scarcity.  For example, my youngest son cried and screamed until he was literally nine months old…I kid you not.  This includes his time in the car, in the car seat, or anywhere else for that matter.  Yeah….it was easy to concentrate while I drove him anywhere-not.  It did help though when I gave him whatever snack would keep him quiet like Ritz crackers (these are great because they are super fine in texture and make excellent crumbs all over your beautiful convertible), or his bottle full of red Gatorade so he could suck half of it, leaving the other half all over the light upholstery of my beloved car.  Save the newly acquired need-for-Occupational-Therapy-money and buy a used car good enough to get you from point A to point B.  Yep!  We spent incongruous amounts of money on occupational therapy due to the fact that many children affected with fragile X syndrome have sensory difficulties, motor planning issues and overstimulation that can lead to behaviors.  You might want to acquire a financial planner right now! 

How do you feel about cleaning products, toilet paper and paper towels?  Not particularly concerned about these household essentials?  Well, get ready.  You will find yourself standing still, hand-on-chin, gazing blankly while furrowing your brow at the perplexing array of choices in your neighborhood grocery store.  Heck, you might even loiter there just to have that one quiet moment to yourself while your spouse is at home minding the offspring!  Regardless, this will become an ever-important decision.  Which paper towel can contain a splatter of vomit without touching your hand?  In my humble opinion (and I will write a letter to the manufacturers when I get time) I have found that it might be nice if the manufacturers would add that scented ingredient to paper towels so that I could avoid my own involuntary urge to hurl into the already noxious pile.  Have a puppy and think this might be somehow equivalent—not even close—trust me.  Oh, and toilet paper!  I cannot say enough about strength here.  Soft is nice, but my first priority is put on its ability to divert my finger from going through the stuff as I assist whoever hollers, “Mom!” from that small-yet-glamorous bathroom.  Seriously though, these issues are no laughing matter (although I have found myself delirious from the occasional day that seems completely consumed by matters of the rear-end), but I do get some momentary relief from a deep, fulfilling laugh.  Days like this remind me that if I didn’t laugh I might cry.

Speaking of tears….are you a crier?  I never was in my early years.  I thought I was tough as nails.  The grief that overtook me after hearing the devastating diagnosis for both of my sons, rocked me to the core.  Wine.  Wine was the one glass full that could help heal, but certainly did not cure fragile X.  There is no known cure for this syndrome.  It took me years (in fact, based on wine consumption, I may still be in the throws of grief) to overcome the full stages of grief that accompany the loss of those expectations I had for my children.  So, my one piece of advice here must be to become an expert in wine.

Are you feeling particularly healthy at this stage in your life?  You go to the gym every single day?  Feel the burn?  Look great in a Speedo or bikini?  Now, I’m not going to say that this is true for all parents, but….hey…..the reality is that you are never again, as long as your children are living at home, going to have the surplus of time you have now.  I suggest keeping a detailed diary and calendar.  When it’s full, don’t just throw it away.  When the year is done, carefully file it so that later on you can look back at it and see what a narrow perspective you had….errrrr…I mean, what a quality life you had.  In fact, take some of that time and book an appointment right now with your Doctor and have a blood test for a genetic developmental disability that could be lurking in your very own family.  It’s possible ya’ know.  I had never heard of fragile X syndrome prior to my oldest son being diagnosed at the age of 2, just after our youngest was born.  He too, was subsequently diagnosed with it.  It’s a simple blood test!  Perhaps you have a distant relative with some challenges that are unexplained.  Perhaps your spouse does.  Now, don’t get me wrong here…I am not saying that I regret having my two, lovely, loving, amazing sons.  I am just saying that you should give it some real thought before you jump on that rapidly moving train called “Family”.  Reach way down deep inside you and ask the question, “Can I, can my marriage, can my life support a possible child born with a developmental disability?” I sometimes wish I had had that option. There is a 1 in 151 chance the female in your relationship could carry this fragile X gene like I did.

I promised myself I would not attempt to give marital advice to you based on having a child with any kind of disability.  That would require way too much generalization.  But, in all seriousness, I am blessed with the most loyal, loving, dependable, handy, sexy, encouraging husband.  I could probably come up with 1,000 complimentary words to use for him, but trust me when I say that “patient” would not be one of them.  We have worked very hard to make a marriage that works for us and is destined to endure whatever comes our way.  Having a child or children with special needs will try every single sliver of patience you thought you ever had!  But, that one single moment when you see your son make a basket after trying desperately for 7 years of playing basketball, or independently complete a puzzle he’d been working on for months with therapists, or even the first time they hug you and say the words “I love you”.  These are special moments that will bring you to happy tears.  It is these moments that can cause me to lose my memories of those years before kids that I thought were so important.  These are the real memorable morsels that make up my life.

My reasons for bestowing this very helpful advice upon you is one of deep caring and passion for National Fragile X Awareness Month, which is July of every single year.  It is my opportunity to bring to life the realities that my husband of 30 years and I have faced.  Some of the facts are not so pleasant lessons learned; some are memories of small moments of joy; all are what make up our world and what we’ve created.  I wouldn’t trade it for anything.

So, have I done my job?  Have I given you the advice you seek?  Have I caused you to want to learn more about fragile X syndrome and its causes and affects?  Have I caused you to, perhaps question having children at all?  That was not my purpose.  But, if this happens to be your take-away, would you consider donating some of that hard-earned cash to help families like mine?  I would be so eternally grateful.  You can donate to fragile X to help with research and support, or to one cause we have reaped loads from, Speech Therapy and Occupational Therapy experts.  It’s for the children.  

To learn more about fragile X syndrome please visit
To learn more about our experts at

Check out the facts on fragile X at learn more about Cindi Rogers go to 

Thursday, June 25, 2015

The Unsung Hero

Anyone who knows me knows that I am a true believer in the power of perspective.  A new one is circling around us all the time…. just waiting for us to take it in.  We just have to be willing to see it.  I believe a person’s many perspectives come from their own experiences that mold their view of all things in life.  They can be static and they can be evolving.  They can be life-long and they can be momentary.  Each one is individual and unique.  I believe that most Mothers share some common perspectives and I am no different than most Mothers.  

For example, as a Mother, the moment we are blessed with a child, there is a new perspective waiting.  Like the one where we are sharing a hospital room with another Mom who, perhaps, has a child that will not stop crying.  We gaze down at our own peaceful newborn and feel a pang of guilt over our own sense of calm, if only for a moment.  Our perspective in that moment might be that we are glad we are not her. Another example is that not-so-rare visit to a grocery store where we observe another Mother with a screaming child (or perhaps it is our own screaming child), and we are momentarily thankful that it is not happening to us (or we are envious of the other Mom with calm, well-behaved children).  These are momentary and fleeting.

As a Mother, I find myself tearing up over a news story about a child with cancer that still finds the strength to smile and do something good for someone else as his or her own Mother gazes at them with adoring pride.  I inhale enough perspective to go on another day; another day as the Mother of a special needs child. Some days, smiling does not come easy.  Some days, finding the time or energy to even observe what is around me takes the patience of Job.  I need perspective every single day to keep me sane.  Knowing that my own child will never marry, never offer me my own grandchildren and never experience many of the joys, I myself have experienced.  I am a weak human, and I need something to grab onto for dear life.  Perspective gives me that power.  Somehow I can muster more and more courage from this perspective to put one foot in front of another and move forward. 

Some life-long perspectives are familiar to any human being.  The lifelong ones are harder to keep ‘hold of as we get mixed up in the busy business of daily life.  We find ourselves complaining about the gridlock of traffic, but as we finally arrive upon the accident, we discover that an entire family suffered a horrible accident.  These things supply that lifelong, deeply-ingrained taste of gratefulness we often need.  I know I do.

Perspective often comes at the cost of someone else’s pain or suffering.  This I cannot change.  It is life in all its varied and often grueling glory.  Perspective is often difficult to see when we are in the midst of a crisis or feeling alone.  We are only human, after all.  But opportunities are there.

I had never asked him, but I often wondered where my husband got his perspective.  He is so hard-working, so honest and so caring (can you tell I adore him even after 30 years of marriage?).  He cares about what others think of the work he takes such pride in.  He cares dearly about his sons and their well-being….and me.  He takes great care of his family and almost never complains.  He takes pride in his life and its effect on others.  He has never once even outwardly contemplated giving up.  As his wife, I can say that he is not perfect…..neither am I.  I wondered about how he came to be such a good man.  What gives him the daily strength that he possesses?  This question turned around and around in my mind.  That is, until I met another man that I discovered was the driving force behind his perspective.

My husband, Chris, came home one day and was telling me about this guy whom he had worked with for some years, although I had never met him.  He also owns his own subcontracting business just like we do.  His involves the dirt work to prepare a commercial site prior to foundation, and the parking lot after construction.  As Chris is telling me about this man, his voice becomes softer and more compassionate.  I even see a tear welling up in his eyes.  Chris is such a tough guy that this takes me aback. 

I listen closely as he details a life that I can only imagine.  He runs a crew of 20 men, several trucks, and multiple pieces of large equipment like backhoes, front loaders and dump trucks.  He drives 100 miles round-trip Monday through Friday to take his son to a private school, after his own wife passed away from a long illness.  He then drives all over our huge metropolis checking up on numerous jobs and making sure his business is running smoothly.  Over the years that Chris has known him, he has graciously pre-dug numerous jobs for us to prepare for our plumbing pipe, never charging us a dime.  He does all of this while suffering from the wrath of Multiple Sclerosis; MS so bad that he cannot independently exit his pickup truck to care for his own needs.  Despite this, every single person around him exudes a respect worthy of Mother Theresa.  But this man is not famous.  He is incredibly humble.  As Chris spoke, I could tell my own husband felt that same sense of respect for him, too.  I looked forward to the opportunity to meet this man who had brought my own husband to tears and provided him a clear and unbreachable perspective.

When I finally had the pleasure of meeting this man, I could sense his love of life and his heart as big as the moon.  I walked to his pickup and he greeted me with a smile and kind regard, asking how our sons were doing.  He was humble and serene in his expression.  I also had the pleasure of meeting his son, who was off for the summer, and often accompanied him around town.  His son was polite, engaging and kind as well.  Looking back at the owner, I thanked him for his ongoing and generous help over the years.  He brushed it off as if it were nothing, in his own obvious modesty, asking only how he could help us. Help us, I thought?   

Earlier this year, Chris came home with some disturbing news.  This man had fallen on a job site and broken his left femur.  I knew that it was quite unusual for him to even get out of his truck due to his limited mobility.   It seems there was a problem at a job site. He grabbed his crutches, determined to take a look, falling as he attempted to step over a curb.  The doctors performed a lengthy surgery to pin his femur and he was now confined to his bed for six weeks, which for him would be grueling.  Not being able to independently maneuver his world or keep some semblance of his routine would be difficult, to say the least.

I did the one thing I knew how to do…I prepared a casserole to deliver to him and his son.  We loaded the car on a cold winter’s day with the kids and the casserole and we drove the 50 miles to his home.  His son answered the door and led us to the chair where he was sitting.  Again, there was that smile.  There was no need for pity.  We offered the casserole, for which they were both appreciative, thanking us profusely.  They briefly spoke about the daily PT therapy sessions and work-related duties they were doing, both of them smiling.  Moments wasted on regret were none.  Seconds wasted on the past were nonexistent.  Only moving forward.  Only continued doses of perspective served up for Chris and for me to drink from.  He is the unsung hero providing my own hero of a husband with the daily dose of perspective that feeds his soul.  Now, I am also the happy recipient of his strong and powerful perspective.  How can we ever properly portray the kind of thanks worthy of this man? I do not know, but I am immensely thankful. I shall cling to this inspirational example each and every day. I now know my husband does, too.

I wonder where the unsung hero gets his own daily dose of perspective?

Check out the Rogers Neighborhood and learn more about fragile X syndrome.

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

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  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!

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