Tuesday, March 8, 2016

With Gratitude to Mister Rogers

Click here to read "Part 1" if you need to catch up:

I often wonder if Fred Rogers, also known by his adoring fans as Mister Rogers of Mister Rogers Neighborhood, knew the long-reaching impact he would have on people long after his death in 2003?  The impact he’s had on our family alone would, hopefully, bring a smile to his face and a feeling of great pride.

When they were very young, our two sons would watch intently as Mister Rogers would enter his television home, take off his jacket and replace it with a sweater, zip up that sweater, and change into his sneakers to welcome his neighbors into his realm.  Both would sit or lie on their stomachs, all cozy in their footed pajamas, rarely taking their eyes off of our old console television set.  For our oldest son, now 27, it was a long-term relationship that still continues today.  It may seem strange to think that a 20-something-year-old would still love Mister Rogers, but not for him.  Yes, we do share a surname with Mister Rogers, but sadly, we are not related.  Our younger son, who is now 25, and has also intermittently shared his brother’s love of all things Mister Rogers.  You see, both were born with a genetic developmental disability called fragile X syndrome, and an inherent tendency toward familiar, comforting and repetitious.  This love has come in quite handy many times!  We often use books or videos from Mister Rogers Neighborhood to help us navigate some challenging situations in our own family.  Some might think this a bit old-fashioned or remedial, but it is both necessary and extremely helpful!

The most recent situation to warrant Fred’s help is a doozey.  We are embarking on new territory for our family—teaching our sons how to fly on an airplane for the first time.  Yes….yes….we are kicking ourselves for having never done it before now, but we spent the past 21 years enjoying the sights of the U.S. via our RV, lovingly named “Rocket”.  “Rocket” has taken us to all of the lower 48 states in our effort to help make our sons’ worlds bigger.  In fact, we’ve even been to the home of Mister Rogers Neighborhood in Pittsburgh, PA, four times!  We’ve grown our collective tolerance of Disneyland and Disneyworld, which in itself was no easy task.  We’ve savored many memorable moments visiting other families affected by fragile X syndrome across our great land—something we could never replace.  But, now it’s time for a much bigger feat…..adding Hawaii to our tally.

I blogged about this goal when we set it in January, 2016, so feel free to catch up by reading here: http://mrsrogersfxneighborhood.blogspot.com/2016/01/its-lofty-goal.html

It's important to note that our sons, although in their 20's, have NEVER flown before.  This warrants a full 11 months of preparation in order to successfully fly 7 hours to Hawaii!

The first step was to start calling and e-mailing in an attempt to gather the attention of folks that could help me through the steps that we felt would be necessary to begin this journey (pardon the pun).  My idea was to expose our sons to a practice session at the airport before we would ever attempt to board a plane and fly.  This is what my analyzing mind told me.....but, after three weeks of calling people and no progress, I decided to make a day trip to the Denver airport (DIA).  I suspected that it would be more difficult to say “no” to my face than during a phone call and I was right!  Thankfully, I wore my walking shoes for this one! 

I finally found the offices of DIA and spewed out my story to the first person that would listen.  The nice lady behind the counter picked up the phone, relayed my message to someone on the other end of the line and handed me the receiver.  As my heart pounded outside of my chest, I explained my idea for making a successful first airport experience.  Lorie, a United Angel, seemed unfettered as she took me under her wing.  I explained in so many words that, based on my 24-plus years of experience with my sons, I felt a perfect scenario would be to allow them to go through a full-on practice session at the airport prior to any kind of “live” flight.  Lorie said, “No problem!  Just let me know what date you’d like to do it, and I will prepare a Designated Needs Pass for all of you.”  I jotted down her phone number and e-mail address for use as soon as possible. I had never heard of a Designated Needs Pass, but it sounded like just what we needed!

I prepared the needed information that Lorie requested, and we set a date for our first practice….Friday, March 4th, 2016.  In the meantime, I followed the advice of many other helpful families in the fragile X world, and we applied for and made an appointment for the TSA Precheck passes.  This in itself was no cake walk.  I completed the applications online prior to setting an appointment to get fingerprints.  On Friday, February 26th, we loaded all of us, including our Angels (and the boys’ mentors), Daniel and Amanda, into the car and we set off to the offices of TSA to complete the process.  The TSA passes would mainly help us as we actually ventured through security to a flight, so we wanted to have those available, especially for Hawaii, our long-term goal.  I was a bit nervous about whether our youngest son, Joe, who has many sensory issues still today, would be able to cooperate with the whole fingerprinting process.  As was routine for me, I prepared a visual schedule for the days’ activities to the best of my ability, which helps both of our sons to know what is going to happen, how long it will last and when they will be finished.  That was easy.  When it became Joe’s turn to place his thumbs (both together) on the small glass panel, Daniel jumped into action just as any friend would do.  Joe trusts Daniel and this trust continued as each hand, all four fingers together, needed to be pressed firmly on the glass surface.  When it was Jake’s turn, Amanda guided him with her calm resolution.  After a relatively short time, the process was complete on all six of us.  Step 1—SUCCESS!!

As the time approached for the actual live practice at the airport, I confirmed details, prepared our visual schedule and kept my lip zipped so as not to generate any anxiety over the unknown, new experience.  Anxiety has always been our nemesis, and keeping it at bay would be the key to making the airport experience successful.  I have found that any time we associate a positive experience for any one word, such as “airport”, then future associations will be successful as well.  If it goes in the opposite direction, we tend to have the opposite outcome.

I asked myself how I could help the guys visualize what we were going to do with no real point of reference from previous experiences?  Videos are a powerful way that I have been able to relay information to them in the past, I thought, so why not now?  I viewed many videos on Youtube, but nothing really felt detailed enough.  Then, I thought about our beloved Mister Rogers.  Did he have a dvd that talked about flying or the airport, I thought?  Of course he did.  AND, of course we happened to have a dvd in our sons personal dvd library—duplicate copies, no doubt.  It’s no wonder since Jake spends just about every dime he earns buying Mister Rogers Neighborhood dvds. 

I popped the dvd into my computer and watched every moment as Fred calmly exits his television home and goes to the airport.  He says, “Would you like to visit an airplane with me?”  Of course we would.  The camera follows him as he approaches the airline gate counter, goes through the jet way door and down the long hallway, mentioning how long it is, and onto the airplane.  Fred visits with the pilot and then makes his way to the coach of the plane and into the capable hands of the Flight Attendant.  She helps him find a comfortable seat, buckle his seatbelt, recline his seat, put the tray table down and even gets him a small pillow and blanket to “help him feel comfortable”.  Then, he unbuckles his seatbelt, stands and heads back to the bathroom (brilliant!).  He senses his usual need to ease any child’s fears by flushing one simple little square of toilet tissue down the toilet, washes his hands and directs his viewers to the trash bin.  I found myself nodding my head as I realized how important such simple logistical details are to my own situation.  Fred and the Flight Attendant head to the galley where she shows him the boxed lunch or breakfast that any passenger might eat while on a flight.  All very familiar and comforting details.  Fred thanks her, shakes her hand and heads back up the jet way and into the terminal. The scene fades back to him comfortably sitting in his television home.  I breathed a huge sigh of relief.  Fred has provided me a perfect video model to use in our time of need.  How thankful I am that he had such foresight that could be used in many of the real life situations that we face still today. 

On Thursday night, while sitting on the couch in full relaxed mode, we all viewed Mister Rogers Neighborhood: Going on an Airplane by Fred Rogers.  I could feel the sense of wonder and curiosity.  Both boys were smiling widely.   When asked if they wanted to visit an airplane like Mister Rogers, both replied in a resounding, “Yeah!”  The stage was set.  The plans were made.  Now, for a good night’s sleep.  My own nerves were a bit on edge, but I knew I had to keep them in-check so that I could be both inwardly and outwardly calm the next day.  Chris, my husband, and I have a pact to practice calm whenever we can…..sometimes it is not humanly possible.  It HAD to be today.

Lorie had arranged for Heather, another United Angel, to meet us at a designated spot in the airport, which she did.  She was very calm and at ease, which allowed all of us to proceed like visiting an airplane was going to just be a fun activity.  The first step was to be getting through TSA security.  Surprisingly, it was quite crowded and I wondered if both guys would have the patience to make it through.  I didn’t let on that I was uncertain.  We had Heather go first, then Daniel, then Joe, our youngest, Chris, Amanda, Jake and finally, me.  I was reminded that the Mister Rogers video was pre-9/11 and did not include any details about going through the security process.  But, we had the visual schedule to help, and a pocket full of hope besides.

Despite the crowds, the lines, and the confusion of the TSA process, we all made it through completely unscathed.  As we headed for the train, I breathed a sigh of relief over what I had been so worried about.  I also made a mental note to myself that we would need to practice the process of the screening tube (ya’ know..the tube where you stand inside, line up your feet and a whoosh, whoosh thing goes around you?) at home prior to any kind of flight.  This process is obscure and unclear to someone with Jake and Joe’s disability. 

Next, we boarded the DIA train and headed for the concourse.  The train was fast and there were, thankfully, places to sit down, to help make the ride smooth.  Up the escalator to the gates we went, following Miss Heather the whole way.  There were glances back towards me from calm, smiling faces, as we stepped onto the moving walkway that glided us past several gates.  Joe loved the moving walkway, but Jake proved to be a bit unsteady as he grabbed elbows. 

Heather guided us to the gate and pointed us toward some seats, as we observed passengers still departing the plane that we would get to visit.  There was no hesitation from anyone.  We calmly sat down and waited.  I realized that having to wait a little bit was actually a good thing, as any flight we would actually take would mimic this same process.  Everyone was quiet and observant, but not anxious at all.  Joe even got up and looked out the window, exclaiming, “Airplane!”

When everyone but the crew of the airplane had disembarked, we were told we could proceed. Heather reminded everyone to present their Designated Needs Passes, which we each handed to the Flight Attendant to scan.  I watched with a little bit of uncertainty as we approached the jet way.  This was the part that I had lost sleep over, knowing that it’s a bit closed in and the end can be somewhat visually obscure.  Then, I realized that Fred had also walked a long jet way onto the airplane he visited, which gave the guys a point of reference.  I echoed Fred’s words that he used in the video. “Wow, this is a long hallway!”, I said loud enough to be heard by even Joe who was quite a ways ahead of me.  On everyone went without even a hiccup.

Jake and Joe went right onto the plane, found a seat and sat down; without hesitation, without anxiety, without fear.  It was simply amazing.  They each found their seatbelts and clicked them tightly.  It was as if they were ready for take-off.  Chris and I beamed with joy.  Amanda and Daniel sat next to the guys and savored the moment, too.  We sat for a good five minutes while we chatted with the Pilot who had peeked out of the cockpit to see who had boarded.  

Then, he asked if anyone would like to see the cockpit.  Joe seemed uninterested, and was ready to exit, so we sent him and Daniel back up the jet way.  Chris and Amanda were excited to see the cockpit, so I guided Jake to the exit.  I was beaming with peace and relief. 

They did it.  It was a success.  There were zero negative connotations attached to the word, “Airplane” or “Airport”.  These are important things in our neighborhood!  It means that we can use these words again in the future without anxiety from either of the guys, and use them for a purpose, a goal…...or to simply make their world bigger.  I think we have the tools to move to step 2.  Angels are all around us.

“While some challenges our children face may make us anxious, they also present us with one of the great opportunities of parenting—the chance to resolve these lingering anxieties of our own.  That’s why I often say that ‘children offer us another chance to grow’. Going through an experience with your child that was once frightening to you when you were a child allows you to find ways to comfort not only your own little son or daughter, but also the child that has remained within yourself.  You’re an adult now and you can use your adult perspective to make a difference in your children’s present and your own past.”~~Fred Rogers

Next up?!  Our first flight to Phoenix! Watch for our story on this full practice.  Click here to read about step 3! http://mrsrogersfxneighborhood.blogspot.com/2016/04/the-worries-of-parent-never-cease.html 
To learn more about fragile X syndrome please visit https://fragilex.org/To learn more about Cindi Rogers go to www.mrsrogersworld.com