Friday, November 4, 2016

A Hard Landing on the Planet Reality

If you are new to this story, catch up by clicking here if you want to read from the beginning (I promise it’s not too long):  It's A Lofty Goal

What would possess a seemingly “normal” husband and wife with two developmentally complicated, demanding, behaviorally challenging sons to try and fly a total of 14 hours to have, what we assumed would be, a vacation in paradise? You guessed it….the pursuit of a happy life.  Yep.  That’s what drove us to the challenge of our lifetime, thus far anyway.  We learned so much that I feel that I must share it with those of you that are stuck in that horrid stage of FEAR.  Fear kept us from doing it sooner.  Fear kept me awake at night for almost a year before we finally did it.  Fear is the one thing that previously cemented me firmly on the ground instead of in the air.

Fear is a real thing when you have children with any kind of developmental disability.  Sometimes their behaviors can be unexpected and uncontrollable, just like all things in life.  So, the easiest thing to do is do nothing, go nowhere, keep them in their safe environment.  But, this is not us.  As hard as it may be to step outside of our safe environment, we have tried to push our two sons to do things that can be hard.  Thankfully, we have had incredible support from Doctors, therapists and others, which has allowed us to sometimes try, fail, and try again.  This situation is no different.

If you’ve read the back story, you already know that we spent A LOT of time preparing for our first ever vacation to Hawaii. Any typical family would spend some quality time getting flights, booking a hotel and reserving excursions…but we are not a typical family.  Our processes were quite different.  That reality became quite clear to me as the long process went on.  We have been fortunate enough to have visited all of the lower 48 U.S. states in the comfort of our RV, lovingly named “Rocket”, but we’d never braved the friendly skies.  It is one thing to be in the comfort of your own RV, and quite another to expose oneself to the vast public full of judgement and scrutiny from strangers also traveling. 

The months leading up to “D Day (departure day)” were methodical and focused, with overall positive outcomes.  The week leading up to D Day was intense.  I had two notebook pages containing my list of things that had to be done, including to-do’s for the house, our business and the trip.  No matter how hard I tried, my sleep was disturbed by thoughts of all the things that could possibly go wrong.  I didn’t want to miss anything if I could help it. 

Traveling such a distance with Jake and Joe required much more detail than if it were just my husband and I.  I reverted to the things that I knew worked well in all of our past endeavors—the tools from my tool box (pictured below) were ready and waiting.  
My go-to toolbox of methods and approaches used daily in our Neighborhood

For those of you needing specifics, here is a list of some of the things that I did:
  • Keeping in mind the threshold, (this means how far ahead we can tell our two sons about something) I created our normal refrigerator calendar for October showing only the usual routine for every day for the whole month.  I posted it in its normal spot on the refrigerator.  I created another calendar showing the normal routine, plus I included the actual “airport”, “beach”, “hotel”, etc. that I intentionally revealed only two days before departure.  This allowed the guys to get through their normal routine for most of the month prior to the trip without perseverating on what’s to come, say, weeks before.  Dad and I would have needed straight jackets if I had allowed them to know too far ahead of time—some of you may know what I mean. Giving them details about something that is coming up sometimes causes behavioral issue due to the anxiety it may cause, so we wait to tell them about it. (Yes…it’s trickery, but a parent has to do what a parent has to do.)
  • The afternoon before departure, after we had duly informed both boys of our plans via the calendar, I involved them each in the packing process so that they could more fully understand what we were doing.  This went amazingly well!  They each chose only 1 extra small item to include in their luggage. Jake chose his Ernie stuffed animal and Joe picked a book. 
  • The day before departure, I purposefully scheduled myself time alone so that I could put together all of the detailed picture symbols for use on a visual schedule.  I placed them on an “all done” board that we would use to tell the boys what the first leg of the journey, arrival and transport to the condo would look like.  I also packaged up additional symbols that I could use on similar “all done” boards for the 9 days of the vacation.  Here is what the visuals looked like for the travel day:

  • The night before departure we watched the DVD “Mister Rogers-Going on an Airplane” one more time, which was a positive reminder since we had watched it in April prior to our very first plane ride.  After the video was over, I asked, “Are you ready to ride on an airplane again and go to the beach?”  Both boys answered with a resounding, “Yeah!!”  I, then, presented the visual schedule that I had put together for the first leg of the trip.  This included leaving home (we hired a car to the airport so this would be a transition from the norm), getting to the airport and all of the steps that entails, going through security, waiting at the gate, and finally, getting on the plane.  After we had seen what was going to happen the next day, both boys jumped up from the couch and headed to bed.  Surprisingly, everyone slept pretty well!
Departure day had finally arrived! Our resident Angels, friends and mentors Daniel and Amanda, arrived at our house early so that everyone could get ready for the day together.  Bags were packed and everyone was calm; relatively speaking anyway. I verbally went over the visual schedule again, pointing to each step as it would occur.  There were no grumbles, there was no resistance.  The day of truth we had planned so long and hard for was finally upon us.

Everyone made it through the first part of the process perfectly.  We all boarded the plane and got seated.  I didn’t want to let out a deep breath yet.    

As the Boeing 777 took off and ascended to its optimal cruising altitude of 30,000 feet, there was a bit of turbulence that would normally cause me to be a bit jittery.  As I glanced over at Jake and then up at Joe, I saw only smiling faces void of any nervousness or anxiety.  It was at that very moment that I realized the fear that I had was my own.  Jake and Joe had no unearthly idea of what any turbulence might precipitate.  They had no reason to worry about something they had no idea about!  The reality was that my own fear was a preconceived anticipation of something formulated in my own imagination!  It was then that I also realized that all of the worries I had lost sleep over during the previous month were in that same category.  I even wondered if Chris and I had allowed that fear to hold our sons back?  They obviously were ready for this monumental challenge as demonstrated by their complete success thus far.  Even though I had these thoughts, I continued to hold my breath a bit, pending the rest of the day.  We still had 7-8 hours before we’d arrive at the condo, after all.

Just to be on the safe side, I had prepared at length for the, what I thought would be, exhausting 7-hour flight.  Our very kind friend, Chuck, had helped me load at least 40 full length movies on each of the boys’ laptops—ya’ know….just in case.  We had portable DVD players, PSPs, iPods, coloring books, snacks and favorite books.  We never needed those laptops.  The time sped by without incident. Next thing I knew, we were landing. 

The first sign of any disturbance in Joe, our more sensitive one, occurred when the plane landed and it was time to deplane.  He quickly jumped up out of his seat positioned at the front of the plane, and darted toward the exit.  Chris ran after him, and quickly caught up in order to direct him to baggage claim.  Joe obviously needed to move his body after a long 7 hours.  So, that’s what we did.  We walked and walked until we reached the baggage claim.  This helped, but was not enough to get all of those sensory wiggles out of Joe.  Joe was kicking me, jumping and biting his hand.  We were used to this and knew it meant that he needed some gross motor movement.  Chris needed to get to the car rental agency in order to pick up our vehicle.  He thought he would take Joe with him…I was afraid that this kind of waiting process might only add to Joe’s impatience. 

Daniel, Amanda, Jake and I waited with the luggage.  Jake was incredibly content and relaxed.  Before we knew it, Chris and Joe had the rental car and we were on our way without incident.  My temporary fears were abated.  Soon after, we all made our way to the much-anticipated, visually planned, dinner at the ever-familiar Chili’s.  This was a great way to inject some familiarity into a day that had been filled with so many new things and multiple transitions.  We’d have plenty of time for trying new things later. 

One thing that we knew would be an issue, but we didn’t know how we would handle it specifically, was the 4-hour time change.  By the time we got to dinner, it was about 5:30 Hawaii time, but already 9:30 p.m. home time.  The guys usually took their medication at about 6:45 p.m. home time.  We’d had plenty to eat on the plane, so meal time wasn’t much of an issue, but I suspected, in hindsight of course (as any good Mother would), that Joe’s “wiggles” at the airport might have been a sign of the absence of those medications.  So, Chris and I decided during dinner to go ahead and give them their normal doses.  We knew it would take some time for them to settle into a new time zone, but at this point in the trip, we really weren’t sure how difficult it would be.

It had been a long day so far, and everyone was very glad to finally get to our home base and get settled.  I had spent weeks researching where to stay on Oahu, and we were all so happy with the choice to stay at a condominium instead of a hotel.  We had a full kitchen, 3 bedrooms, 3 bathrooms, a living room, dining room and lanai that overlooked the beach.  We would stay at this location again and again, given the opportunity.  The location was incredibly quiet, uncrowded and very private, giving us all an extra err of relaxation. 

The first night, we were all exhausted, and slept many hours, even beyond our normal night’s sleep—even the boys!  This was highly unusual, but welcome.  The second night, the boys slept closer to their normal, waking at around 6:00 a.m. Hawaii time (still, that’s 10 a.m. home time!).  For the remainder of the time, they woke before dawn at around 5:30 a.m., which is more in line with our routine.  Even though I would have loved to get extra sleep during our vacation, this early wake-up call allowed us to see some pretty incredible sunrises and enjoy the serene, quiet mornings before the rest of the world woke (trying to see the positive here).  We found it to be more of an issue to keep them awake in the evenings, but we strived for 7:30 or 8:00 p.m. which became our new routine.

As you can imagine, I could talk forever about every detail of this incredible achievement for our family, but I don’t want to bore you.  Each of the 9 days we spent in Hawaii included some routine items and usually one new thing.  We spent a lot of time at the beach, allowing the boys time to get reacquainted with this sensory meca. We visited several restaurants, drove to the Northshore, did some shopping and took a break to swim in the pool. We found refuge in our home base filled with familiar things like laptops, snacks and relaxing.  So, suffice it to say that the return trip (a night flight) was just about exactly as we planned it.  The jet lag has been amazingly minimal for everyone but me, but that I can handle.
An Ode to our beloved therapists that taught us all the tools
to make our real-life dreams come true.

I would like to leave you with a few stark realities that we have gleaned from this new and exciting experience:

We worried, planned and feared every single detail of this trip even though we desperately wanted to take it.  The reality was that Jake and Joe were ready to do it!  I suspect that our own fears had prevented us from doing it sooner.  I am happy that we overplanned the details, but realize that it is our own fears that hold us back, not real facts. We will need to work on this in the future (after we are over jet lag).

We have worked very hard to make our home a place of independence for Jake and Joe, modifying many things so that they can use and access them independently. Both guys even know how to do most things independently in “Rocket”, but it’s taken time.  In reality, we underestimated their ability to transfer these skills to a new place.  Everything from the faucet handles to light switches to door knobs were unfamiliar.  The entry door, elevator and condo door required a key card, which made it difficult for the guys to move around by themselves.  We could see them struggle to use simple things that we take for granted at home or in “Rocket”. I am so happy we had 9 days to allow the boys to get used to their new environment and begin to feel comfortable in a new place, but it would take much more time for them to be proficient.  Having had such a positive experience, this leaves the door wide open for using this condo again in the future, and perhaps increase their learning.  We’ve spent years teaching them to use things in their world, but it will take time to adapt that to new places. We still have work to do.

One of the hardest things for a parent of a child (even though our guys are adults, they are still my children) with a developmental disability is the element of the unknown.  We don’t always know exactly what sets off our kids into a behavioral episode.  There was a moment in the airport where Joe was kicking me and biting himself in front of everyone. This is the part where we are exposed to embarrassment and judgement from strangers—A difficult thing.  When this happens to me, I find that I instantly revert back to that old feeling of loneliness. That rush of embarrassment and frustration fills me up and makes me question my purpose for doing something new, even for just a moment.  In reality, I was never alone.  There were those people who were actually Angels right there with me, like Daniel and Amanda, or the incredible United Flight Attendants, or one of the many kind Hawaiian people; the bartender, the Cashier at Walmart, or the staff at the condo.  There were those who were there with me in spirit as represented by, say, the super cool luggage tag from my friend Cara; or the beautiful dress gifted to me specifically for this trip from my friend Lisa or my handmade bag from my friend Angie.  We had the spirit of our incredible Doctors and therapists that had given us all of the tools we needed to succeed.  We had the comforting knowledge that our friends and neighbors were caring for our dog, Lulu so that we could have this incredible trip.  We had the kind, caring wishes of the many, many people that helped us get to this point, only to want us to succeed.  These are the things that continue to give me strength to try these hard things.

We knew all along that this special trip would be hard work and emotionally hard.  The reality was that it was so worth it.  The reality was that we did it successfully and made memories that will last a lifetime.  Number 49...check!  The amount of proud that Chris and I feel is simply inexplicable and surmountable.  Our perspective has grown beyond our wildest dreams to see that much more is possible.  Like all things that we have discovered on this fragile X journey, our sons have taught us huge lessons.  We will try to listen closer and be open to that learning.  
Aloha and Mahalo!

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