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.
Aloha and Mahalo!
To learn more about Cindi Rogers, read her full story at Becoming Mrs. Rogers
Incredible story, extraordinary family!!
ReplyDeleteLisa Thomas
Lisa, your kind words brightened my day :)
Delete