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???