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!

To learn more about Cindi Rogers, read her full story at Becoming Mrs. Rogers

A Difficult Teachable Moment for a Parent of a Disabled Son

In 1789, Benjamin Franklin wrote that, “Our new Constitution is now established, and has an appearance that promises permanency; but in this world nothing can be said to be certain, except death and taxes.”  Today it is often condensed to just say that there is nothing certain in life except death and taxes.  If this is true, why do we not spend way more time and energy on teaching those things that are the two guarantees in life?  I mean…if we know these things are coming, then why not be prepared, especially when it comes to death?  We are all going to experience it…there is no way around it. As humans, we are all going to die.

When it comes to death, being prepared can be a bit tricky if you ask me.  There is no real way to “practice” it for ourselves.  When we experience the death of someone or something near and dear to us, we are often so emotional that we don’t find time to think about the stages or what we can learn from it.  Having two adult sons with a developmental disability called fragile X syndrome has brought all of this to the surface for my husband and me.  

Fragile X syndrome has caused a whole lot of difficult-to-understand-scientific-garble-talk crap (but if you really want to know more, go to www.fragilex.org) to happen in our sons’ brains.  Suffice it to say that they operate at about the cognitive age of 5 year olds, with a vocabulary of a 2-year old.  So, how do you teach someone in a big person’s body about something so difficult, and at the educational age of that?  Very. Carefully.

Even at the ages of 25 and 27, they have not really experienced a great loss of someone very close to them.  Nor have they been allowed to really understand what losing someone means.  When they were 2 and 4 years old, their Grandmother passed away.  It was very traumatic for my husband, Chris, and I, but the boys were too young to understand.  Even at that age, we memorized saying, “Grandma went to Heaven”, just to provide some point of reference if we were asked (which we weren’t because they couldn’t speak at this age).  I think the whole thing was more of a coping mechanism for us than them.  

A few years later, we lost our Boxer, “Bud”, and, again, it was somewhat transparent to them since we had already acquired a new dog named, “Elmo”.  

Elmo was a one-of-a-kind dog that we had trained to eventually become our youngest son, Joe’s, companion dog.  This is the dog that they both grew up with from a very young age.  Elmo was the one that they formed a tight bond with.  When he died in April of 2012, this was the first real devastating loss that either of the boys had experienced up to that time.  There was a bit of lead-up to his passing since he was sick, which gave Chris and I time to think about how we should help the boys to understand this loss once it happened.  

When Elmo was sick, we made sure we used words like, “sick” on a daily basis, as well as, “doctor” and “sad”.  We weren’t sure what we were doing, really, but we had to try something.  We desperately wanted the boys to be able to experience loss even though it would be really hard.  Hard because seeing your children sad is a difficult thing for a parent.  Hard because, we ourselves were sad, too.  Hard because sometimes the boys are feeling something that they themselves do not understand.  But, we knew the only way they could grow to understand it would be to experience it.  There is no way we could teach emotions through a book or lesson.  This is the part of parenting that is get-down-in-the-trenches hard.

We had an idea.  We thought we could use something familiar to help them understand the very obscure concept of loss, as well as the feelings we were all going through…..Mister Rogers Neighborhood.  Our oldest son, Jake, has always adored Mister Rogers, and, in fact, was obsessed (still is) with all things “Fred”.  It just so happens that Mister Rogers has a video all about death in an episode called, “The Death of a Goldfish”.  He also has a book entitled, When a Pet Dies. We had our resources, now we just needed to muster the courage and swallow back our own tears in order to begin.  

The night that Elmo died, we clung to our normal routine and when it was time for “couch”, we decided to make our move.  I spoke in a very calm voice as I swallowed back my own tears, but said that Elmo had died that day and that he would not be with us anymore in the house.  He would go to a new place called Heaven and he would run free and not be sick anymore (how do you really explain Heaven????).  There was no reaction from the boys.  Then I said that we would watch this Mister Rogers video, and there was elation from Jake because we didn’t normally watch a video at this time in our routine.  We all watched the episode together and listened carefully as Fred explained that it was ok to feel sad.  After the video ended, Chris said that he felt sad and that Mommy felt sad, too, without Elmo here.  I said that it was ok to feel sad and that sometimes when I was sad, I cried..then, as if right on queue, my own tears flowed.  Joe spontaneously broke into a whale, alligator tears and all.  I wasn’t sure if it was because he was sympathetic to my tears, or if he was, in fact, feeling sad.  Then, Jake screamed and hit his leg with his fist.  I thought how appropriate this all was, but wondered if they really understood what was happening.  We might never know.  We know they both definitely have feelings, but in our 27 years of experience, we also know that sometimes the feelings can be confused or misdirected.  Teaching feelings has been one of the most difficult things we have had to approach as parents.  We continued to talk about how crying was appropriate when we felt sad and when we missed someone.  Then, we moved right back into the comfortable routine, switched on “Jeopardy”, and sailed through the rest of the evening.

As the months after Elmo’s death passed, we would often hear them both ask after Elmo, and we would respond with, “Elmo is in Heaven, remember?”  To this day, Joe, especially, asks for Elmo, leaving us to wonder if it might have been easier to name our current dog, “Lulu” after him.  We are never sure if it’s just the habit of knowing that name, or if he really wonders about Elmo.  Again, we may never know.  We continue to wonder how we could improve on their understanding of death and loss.   
Just as that ole’ guarantee promises, the situation has again come to the surface.

This week, we lost a dear friend of the family, Jack.  We knew Jack for some years and he spent quite a lot of time at our house.  He lived about an hour south of us, but a visit required him to drive over something called The Palmer Divide, which is synonymous for extreme weather, often making it treacherous, especially in the wintertime.  So, when needed, he would stay with us and wait out the weather.  Then, Jack got sick.  As Jack’s medical situation progressed, he would travel to get treatment in our area, and we would gladly offer our home for his comfort.  It was a win-win because we all loved him dearly.  As time passed and the relationship between he and the boys solidified, Jake would ask for “Jack” on a regular basis, wondering when he would be visiting once again.  If I knew, I would tell him, but if not, I would always say, “Jack is at home today”.  Each time Jack would visit and then depart, hugs would ensue from both boys, which says a lot because they are not naturally drawn to hugs from anyone but Chris and I.

Jack grew sicker and sicker, and weaker and weaker.  The visits were more and more frequent.  His spirit did not dwindle much, always offering a “high-5” or hug to the guys.  Last week, he had his sister drive him up when he came to see us and chat about things that were important to him and what the plan for his upcoming next step would be.  We aren’t family, but he often referred to us as such, so we talked about many very deep subjects, including how he wanted to go to his final resting place.  It was a sad time for our family and for Jack.  

During this illness, we, again, did not do a stellar job of communicating with the boys about how sick Jack was, or involve them in the real adult conversations.  They were just there forming a bond with Jack and enjoying his company.  We now see that we could have done more to prepare Jake and Joe, but we were too busy having hope for a positive outcome, and not thinking about that inevitable loss.  How could we face the idea of loss when we were busy clinging to hope with Jack?  That’s a tough question.  So, now we are faced with the task of how to allow Jake and Joe to grow through this very sad occurrence, and teach them to be one step closer to understanding death and loss.  Is it wrong to want to use this situation as a teachable moment?  I don’t think so.  

Sometime this week we are planning to have Jake and Joe attend their very first funeral and graveside service.  After I gather all of the information and facts about what is going to happen, I will do my very best to prepare them for this.  It’s important.  We need to find a way to say goodbye to a friend while we are here to support Jake and Joe through it…on our own terms.  It promises to be a difficult teachable moment.

This brings to the surface a very difficult subject for us as parents of two children with significant developmental delays.  Our own death—our own mortality.  Our sons will always require some kind of supervised care.  Someone besides us will be in charge of this day-to-day task.  We have done all of the planning; the will, the trust, the life insurance, etc., in order to prepare for our own replacement.  But, what about preparing our sons for the loss of our presence?  Is this something that we can prepare them for?  Since we have no plans to send them both away to another living situation, we cannot do that kind of pre-transitional training.  I think we will need to depend on situational teaching involving people in our lifetime where we can use the opportunity to model what is going to happen. This is in sync with many of the things that we have successfully taught them in their 25 and 27 years respectively, ……and have faith.  Faith that they will be ok.  Faith that they will grow to understand.  Faith that everything will be ok…with or without us.  

“The connections we make in the course of a life--maybe that's what heaven is.” 
― Fred Rogers

To learn more about Cindi Rogers, read her full story at Becoming Mrs. Rogers

The Worries of a Parent Never Cease: Autism & Fragile X

One of my favorite sayings was that 'worry is never productive'.  I’ve said it many times over, say, the past 15 years.  My head knows this, but in reality my heart is missing the message entirely.  Today is the day that I abstain from saying this ever again….mostly because it’s not always true for me.  Worry, in fact, HAS been productive for me.  But, does it ever cease when you have two adult sons born with fragile X syndrome, and later also diagnosed with Autism?

Since April is National Autism Month, I think it is important to mention that Fragile X Syndrome is the single most common inherited gene form of Autism and accounts for approximately 2-3% of Autism cases (read the full article here: http://fragilex.org/2014/support-and-resources/fragile-x-syndrome-and-autism-spectrum-disorder-similarities-and-differences/).

Speaking from my own perspective, worry for my husband and I began long before our first son was ever born.  We worried about whether we would we love him/her enough?  Would we be able to provide all they needed until they could provide for themselves?  Would they have all 10 fingers and toes?  I believe these worries are fairly common when it comes to parenting….but that’s where our common thread with parents of typical kids ends.

Once our oldest son, Jake, was diagnosed with fragile X syndrome at the age of 2 ½ (coincidentally our youngest was just 3 days old at the time and we were told there was an 80% chance he, too, would have it—which he subsequently did) with the most common form of genetically passed developmental disability, our worries shifted into overdrive.  Not that we hadn’t had any worries until the age of 2 ½, of course!  But, now the worries were pretty rampant due to the complexity of unknown factors. 

At the age of 2 ½, Jake was not saying any words.  One of our central worries at that age was whether he would ever speak at all!  He had barely learned to walk by this age, too, which steered our worries toward the unbearable thoughts of physical disability.  Day or night, we worried and fretted over things we had no idea how to solve or even which way to shift those worries into something productive.  Wrinkles began to appear in places they had never been before.  Sleep became less and less as we lie awake after hitting the pillow exhausted from our day’s work and worry.  We ran from one expert to another trying to dispel one worry or another.  Sometimes we got answers, and sometimes we just had to wait and see.  This caused further worry. 

These symptomatic worries shifted to more outward worries as the boys got older.  Behaviors were more evident and would often cause stares and embarrassment for my husband and myself.  Both boys would flap their hands in response to joy or overwhelm.  They would make loud noises when they were happy or unhappy.  Stares and looks of disapproval shot our way.  Then, we worried about what others might think of us….might think of our parenting skills….might conclude in their own judgement of our sons.  Our own energy and demeanor would shift, causing us to often exit the store, restaurant or museum at a brisk pace. 

Fast forward to today….both of our sons have been diagnosed with a developmental disability for 25 years.  Yes, they still have challenges, and yes, we still worry.  Our worries now center around tough subjects like, what will happen to them when we are gone? Will there be enough money to take care of their needs forever?  Who will care for them and can we trust them?  All really big, difficult, scary worries.

We’ve been able to affect the outcome of many of our past worries like whether or not our sons could work at a job (the answer is yes); whether they will ever have friends (also a yes); whether they will ever be able to sit and eat a meal at a restaurant (this has become a “hobby”!); whether they will in fact ever speak (they each say about 100 words); will they ever successfully be able to travel and enjoy a family vacation.  That’s the one we’ve worked on for years….family vacations. 

At a young age, we wondered if we’d even be able to leave the house without one of them melting down and spoiling the whole outing.  As parents, we knew we didn’t want to spend every last minute staring at the walls of our home, but how could we manage a vacation with two sons having all of the needs and behaviors ours did?!  We needed to find a way to make the boys’ world's bigger!  We needed to be able to teach them how to tolerate the world around them so that they could see more than just our own wonderful community.  That’s been a long-term goal for our family.  I’ve blogged many times about it, and I’ve even written a book telling some of the stories about our adventures, so it is obviously important.
(To learn more about Cindi Rogers, read her full story at Becoming Mrs. Rogers)

It’s taken many years, but, having visited all 48 of the lower U.S. States via our RV, we have come to a turning point, and a momentous time of worry….we’ve made a goal to visit Hawaii in November, 2016.  We’ve arrived at step 3 in the master plan by doing our first plane ride with the boys on our way to reaching the island of Oahu.  If you want to catch up and read about the first 2 steps click here:
http://mrsrogersfxneighborhood.blogspot.com/2016/01/its-lofty-goal.html

We obtained TSA Pre Check passes a few months back, then we arranged a practice session at our local airport.  Those steps went well.  Then, it was time for our first actual flight.  We chose Phoenix as our destination because we have family there and this helped fill the idea of providing a motivation for the guys.  As a planner myself, I booked the tickets back in January…ya’ know….just to give us more time to worry, and worry we did.  I know I sure did! 

Having traveled quite a bit myself, I am keenly aware of every step a person has to go through in order to board a plane, ride in a plane, depart on a plane and get logistically situated in a new environment.  I consciously broken down each and every step in my head in order to visualize my two sons doing them.  Then, I worried about the parts that I could not control, and there were lots of them.  This very fact is the thing that kept me awake for the past 3 months. 

My brain started out worrying about the chaos that takes place when one goes through security screenings.  Would my guys be able to tolerate just standing in the excruciatingly long line?  Would they be able to tolerate taking their shoes off if asked?  What if they were asked something?  They likely would not be able to answer due to their cognitive disability as well as their lack of language.  What if they got upset during the screening?  We would, of course, be there with them, but what if we could not bring them back from the depths of a meltdown?  My standard course of action is to create a visual schedule showing the specific steps that would happen based solely on what I knew to be true, minus the stuff that I had no idea that could happen.  My brain didn’t even reason with the fact that we had already gone through a successful practice session…brains don’t work that way when you are the Mother of a child with a disability.  Insert worry, subtract reason.

Having never flown before in their life, I worried that our sons would not tolerate the pressurization that occurred during takeoff and landing of the airplane.  What if their ears had some kind of reaction to this type of sensation?  What if we were already in the air and they began to scream uncontrollably so that my husband or myself could not calm them?  This was a very realistic worry.  I attempted to push it out of my mind late at night when I was trying to fall asleep and all my brain wanted to do was think about these things.  That, and all of the logistical things that I knew I had to think about in order to make any trip successful.  We’d pack DVD players, PSPs, Ipods, DVDs, snacks, sick bags (just in case), chargers, battery back-ups, chewing gum, all the plugs to charge everything, their favorite clothing, essential oils for calming, medications, passports, boarding passes and on and on.  The list grew and grew. 

The day finally arrived for our 1 hour 50 minute flight from Denver to Phoenix.  The visual calendar said so.  I did what worked for us and revealed the “big secret” just the night before so as not to encite anxiety over time.  We went over the visual schedule for the day together giving a verbal word for each visual photo. Everyone seemed relaxed and prepared.  I tried to squelch any worries from rising to the surface and appearing on my face.  The time for worrying was past and it was time to reap what we had sewn. 

Three days of visuals prepared and waiting

We persuaded both guys to practice pulling their own little suitcases around before we left the house.  They would be expected to help lug the cases with their weighted blankets in them, for sure.   Each one loaded their own bag into the back of the car, loaded themselves and off we went.  Uncharacteristically, anxiety seemed to be missing in the air of the family.  We parked and headed into the airport. 

I could see the traces of our previous practice as each of our guys marched confidently toward the security check point.  They appeared to know what to do by handing the agent their passports and boarding passes.  So far, so good.  We stepped into a line and awaited our security screen.  I spoke to a gentleman and asked for assistance, which they provided.  Overall, everything went pretty smoothly.  We were detained a little bit by the odd perspective that the weighted blankets projected on the security xray screen. (note to self: check these items in the future).

We proceeded to the elevator instead of the escalator because I had already worried and resolved that it would be too difficult for the guys to negotiate the bags while on an escalator (yay brain!).  We boarded the train to the concourse…..no anxiety yet!  We all walked together to the gate and found seats.  There were quite a few other passengers waiting for the flight, even though it was over an hour from departure.  We passed the time by listening to DVDs, ipods and having a snack.  At one point, Joe, our youngest, seemed to need some movement, so hubby took him for a walk to the restroom.  The time to board finally arrived, and we took the opportunity to board with those that “need a little extra time”.   We took our seats and buckled in…just as we had practiced (more thanks to Mister Rogers!). 

I sat with Jake and Dad sat with Joe in front of us, two-by-two.  A little flicker of worry passed through my head as I knew the “unknown” part was upon us.  How would the guys do during takeoff?  I took a deep breath in and let it out.  I made sure they each had a piece of gum and their headphones on.  I rested my head back on the headrest and sighed.  I heard no sounds.  I felt no worry.  Suddenly, I realized that the time had passed without incident.  In fact, the 1 hour and 40 minutes (we had a tail wind) passed so quickly, I didn’t even have time to read my book that I had brought along! As we descended into Phoenix, Joe shouted, “Look! The city!”  I swallowed back tears.  Worry averted.

We all enjoyed family for two days, and then it was time to worry about heading back home.  On the morning of our scheduled flight, I produced the visual schedule that I had prepared for just this occasion.  I pointed through the steps, providing a verbal reinforcing word for each visual step, including “go to airport”, “get on plane”, “buckle seat belt”, and “home”.  Neither one of the boys produced any outward signs of anxiety over any of these previously learned steps.  This was the sign I had been waiting for to prove that the words “airport” and “airplane” lacked the negative connotation of a past negative experience.  We had done it.  They were ready.  Everything we had done to this point produced only a positive outcome….I could subtract many steps from the worry list in my head.  I needed only worry about the things that would become new as we move forward.  What a relief.  What an utter gargantuan relief!!!

Of course, we made it home in one happy piece.  Everyone survived…even Mom and Dad.  What did we learn?  Well, the same thing we always learn!  Somehow, things we worry so much about, work out in the end.  But, the fact that I/we thought through each step, each scenario, each anticipated morsel, helped us plan and methodically approach this HUGE step in our ultimate goal and make it doable for our sons. 

Will we get to Hawaii?  We will continue to push forward…one worry at a time.  It’s a huge, long flight to Hawaii….7 hours!  That’s huge compared to the 1 hour 50 minute flight.  Oh, and now I am worried because a few days ago when I checked flights from Denver to Hawaii, the price had doubled since I checked in January.  I am worried because it may be out of our price-range.  My worries will carry on.

Sometimes I just have to cling to faith and let go of worries....

"If we expect our children to always grow smoothly and steadily and happily, then we're going to worry a lot more than if we are comfortable with the fact that human growth is full of slides backward as well as leaps forward and is sure to include times of withdrawal, opposition, and anger; just as it encompasses tears as well as laughter."~~Fred Rogers

To learn more about Cindi Rogers, read her full story at Becoming Mrs. Rogers

With Gratitude to Mister Rogers

Click here to read "Part 1" if you need to catch up:
http://www.mrsrogersfxneighborhood.blogspot.com/2016/01/its-lofty-goal.html

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 4^th, 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 26^th, 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 Cindi Rogers, read her full story at Becoming Mrs. Rogers

IT'S A LOFTY GOAL!!

My husband, Chris and I, have never been ones to shy away from a big goal for our sons.  One of the biggest goals we set 8 years ago was for our son, Joe to walk the graduation ceremony with his classmates at Columbine High School as a Senior.  Of course, I had to blog about the experience in hopes that is would help other families facing some of the same challenges we faced to see that it is possible. http://mrsrogersfxneighborhood.blogspot.com/2011/06/importance-of-rocket.html

“Challenges” is really too minor of a word when I speak about the daily things that we face each day with Jake and Joe, our sons both diagnosed with fragile X syndrome. (https://fragilex.org/)  Sometimes I think a more appropriate word would be impossibility!  Any person diagnosed with a cognitive disability can have difficulty with simple that others may arrive at more easily.  In the case of our sons, speaking, taking care of their own personal needs or even being around other people and things can cause overwhelm.

My husband and I, over the 24 ½ years since diagnosis, have learned many methods and strategies to help us help them.  We continue to hone our skills in these methods and approaches every day.  In 2016 we have set a very lofty goal where we are going to need to muster every ounce of experience from our past to help us meet the goal.  It is possible that we may have raised the bar too high, but only time will tell.

In the past 20 years, we have become avid campers and currently own our fourth RV, we adoringly nicknamed “Rocket”, after a character on a children’s television program, "Little Einsteins".  We have had the privilege of traveling throughout the U.S. in “Rocket”, hitting all of the lower 48 states, all the while visiting other families touched by fragile X syndrome along the way.  Why not make a goal to get to Hawaii, we thought?  Seems like a nice goal, right?  With this lofty a goal, we anticipate many challenges to come. 

The very first stumbling block is the fact that neither of our sons has been on an airplane.  Never.  Ever.  This fact lends a itself to many hours of worry in a Mother's mind!  It's also one of those times when I wonder why on earth we never made flying a priority!  Would'a, should'a, could'a.....We have no idea if the loss of air pressure as we ascend in the aircraft will bother them.  We have no idea if we will be able to keep them occupied during an almost 7-hour flight!  We have no way of knowing how long the security line will be on flight day.  And this is only to mention a few of the things I have begun to worry about.
   

So, naturally, I shift into to my panic modus operandi whenever I approach a problem.   I will start with what I DO know:

-I will take on the task of calling, calling, and calling to find out about any programs that are offered by either TSA, our airport or other airlines that might help us do some sort of practice.
-We will make a plan to take 2 other short flights (destination unknown) to help prepare us during the 11 months prior to our departure to Hawaii (hopefully cheap flights).
-We will attempt to fly first class even though it will cost a significant amount more. I already know that United Airlines is the only airline that flies non-stop from Denver to Honolulu, so we’ll book that as soon as possible to secure it.  I suspect first class will allow us more room as well as early boarding onto the plane.  It’s a chunk of money, but we will forego any other trips in 2016 and save our, in the words of our son Jake, “bucks”! Anybody have any spare miles they want to will us?
-Our destination in Hawaii will be the Disney resort so that it is highly motivating for the guys, and builds some level of familiarity. We will harness our helpers from our last Disney trip to help us book this one, too, since I am not familiar with anything there at all.  Watch out Missy Zolecki and Me and the Mouse Travel!
-We will plan to take our most trusted friends in Daniel and Amanda with us.  Jake and Joe would much prefer to hang out with them, anyway.  It will add some extra cost, but the goal is to make the trip successful, and this will definitely do that.

There are a number of other logistical issues that must be addressed as well, but they will wait.  By booking the flight and resort early, it will force me and Chris to stick to this goal.  Not that it’s not a fantastic goal, but it poses some scary hurdles.  I think this might be the biggest goal we have ever set….or perhaps since a huge majority of it is so out of my control, it may just seem lofty. I like to do stuff I can control.

Sure, I have fears!  But, I have 11 months to work through them.  It’s important for Chris and me both to take this time to work through our own fears so that we can be calm energy for Jake and Joe.  Any sign of fear will likely cause the plan to fail. 

This will surely be one of the most expensive goals we have ever set, too!  It is not a fact that we take lightly, but we'd like to make it a reality for all of us.  Any person that doesn’t know us might ask, why we would put ourselves through this kind of stress when we know it will be tons of work without any guarantee of the outcome?  The answer is simple.  We strive to make our sons’ world bigger.  Life with a disability can be limiting enough without us setting boundaries.  We just need to work hard to make new things possible in a way that allows them to reach up to meet the bar.  Hawaii here we come! 

As I formulate an action plan and check off items, I will update this blog with our progress.  Thank you for reading!
Click here to proceed to "Part 2": http://www.mrsrogersfxneighborhood.blogspot.com/2016/03/with-gratitude-to-mister-rogers.html