Friday, April 14, 2017

It's Difficult to See the Blessings Through Tears

Mom and oldest son-Easter 1993

Holidays always elicit mixed emotions for me.  I often use holidays as a yard stick-a measuring implement to gauge the progress of my two sons.  Photos from past years stir up feelings of happiness or even sadness, good times or not-so-good times, making it difficult to immerse myself in the blessings of each passing year.

When our oldest son was just learning to walk, around the age of 2, I ignorantly imagined that he was ready to participate in a childhood rite of passage--dying and hunting for Easter eggs.  At the time, I remember thinking how wonderful it would be to organize the egg dyes, each one mixed with care, prepared in little matching plastic cups, ready for him to patiently dip each egg and wait for it to magically turn a bright color.  I purchased the necessary items, methodically prepared each cup, dropping in the little tablet, mixing it with the vinegar then stirring to reveal a new color.  I put a drop cloth on the floor, knowing a toddler could wreak havoc on a floor, me smiling in anticipation of what was to come.

The moment that I plucked our son away from his spot in front of the television, watching his favorite program, he began to wail.  I cradled him close to my body to reassure him that my idea would be much more fun than whatever he was watching, I was sure.  He quieted some. I effortlessly shifted my grasp to high under his armpits, as all Mothers learn to do, bent his little limp body to slip his legs into the highchair, and moved to set him down.  Sometime during the split-second maneuver, he flailed his arms, knocking over the perfectly placed cup of blue dye.  It fell to the floor onto the smooth cover, spilling over onto the hardwood floor.  As it fell, I inhaled sharply in a startled gasp, causing him to start, resuming the ear-piercing wail. 

My mood and my determination plummeted.  My disappointment rose to the surface. I paused, as I sat next to him crying, evaluating my own motivation and reasoning.  Nothing seemed fun about that moment at all.

Every emotion possible floods back to me as I hold a photo from Easter, 1993.  I am bent over attempting to convince our oldest to want to participate, search for eggs and to smile.  My own expression is hidden, but I can remember feeling a bit hopeless at my failed attempt.  His expression is not one of fun, either.  His expression exudes uncertainty. He was still in a horrible phase of extreme fear at the mere sight of any kind of grass or lawn, so I chased him around the patio.  He had no idea what we were doing when it came to searching for eggs.  He didn’t even like to eat eggs!  My hand was completely guiding him into some kind of unknown territory that simply scared the crap out of him. Nothing even remotely close to the word fun.

Another photo from Easter week 1997 elicits another memory completely.  My husband, Chris and I, sit relaxed and smiling in a little restaurant in the center of Paris, France.  He sits handsomely in his new suit, purchased just for this trip, and I, leaning toward him on his left, wearing a brown fitted dress with matching jacket, both of us smiling wide and looking our best. The photo appropriately gives the feeling of a relaxed evening among friends, sharing wine and good food.  On both sides, we are surrounded by some of the greatest minds in the world of Fragile X Syndrome, a genetically transmitted cognitive disability that both of our sons had been diagnosed with some six years earlier.  As I stare at the image, the emerging emotion is one of utter warmth.  Why would such a photo representing a devastating diagnosis, ever bring on such a positive emotion?

After six years of grieving, struggling, and questioning all things on the earth, this one single week proved to me that we were not alone.  We met professionals and families alike that knew what Fragile X Syndrome was. We were welcomed into the homes and at the tables of families just like ours, albeit in the romantic surrounding of Paris. They’d all had similar stories to tell, and they all shared them us.  We learned that there were Doctors that cared and sweated and aimed to help us.  I shared our family’s story.  The audience applauded with a look of familiar sadness in their eyes. 

Now, here our family is, 20 years later.  Easter weekend is once again upon us.  We’ve learned many lessons over the years, mainly how to make it meaningful for our family and do it in a way that makes sense for our very adult sons. 

Many years ago, I threw away all of the paraphernalia associated with egg dying, knowing that it wasn’t necessary to mark this holiday with an egg hunt.  The four or so years of tearful photos of both sons proved that point loud and clear.  So, we moved on, doing what wasn’t “typical” in order to live a happy life for us—not as dictated by the convention.  Yes, it was sad for me in the early years, seeing photos of other children with broad smiles on their faces, holding little baskets, dressed in finely pleated costume, as they bent to retrieve the treasured colored egg.  That picture is not a happy life for us.

This year, we planned the usual dinner in the dining room with napkins on laps, the air filled with smells of yummy choices that I have prepared with care.  But….there will be one new addition. 

About a week ago, as we reviewed the week’s upcoming events with our sons, as we always do, listing Easter and dinner and visitors, we had our own surprise.  Because it is helpful to alleviate any anxiety for our guys, I rattled off some of the familiar things to give ease to the dialogue; ham, potatoes, deviled eggs, jello salad, rolls, coconut cake, sit in the dining room.  I was met with the occasional, “Yeah”, or “Mmmmm” as I listed off each item.

In a surprising twist, our oldest who has limited verbal skills, immediately responded, “Eggs, there!” (pointing to the back yard)

I looked at Dad, who seemed as surprised as I was.  I looked at our son with that hopeful expression on his face, and said, “You want to hunt for eggs in the back yard on Sunday?”

He said, “Yes!” with all of the fervor he could muster.

I said, “Ok, I will put it on the calendar for Sunday.”

Now, at the age of 28, I wonder if he has any real recollection of those egg hunts all those years ago. It doesn’t matter. He wants it now, so I will oblige. There is no age limit for egg hunts.

Dad taking a break from "fun" with boys 1993

Sometimes it’s hard for me to see the blessings during any holiday as I am deluged with images of cute, eager faces on typical children enjoying a typical Easter celebration with family and friends.  As I gaze at my own photos of years gone by, though, I realize that all I need to do it look for blessings and I will find them right in my own midst.

When I look at the photos of our, now two adult sons, when they were very young, I realize how very far they’ve come since those difficult toddler years, I am in awe.  I’m in awe of their growth, yes, but also their courage, determination and perseverance.  They have far exceeded any expectations we had in those early years.


When I look at the lovely memories from our trip to France, knowing it’s been a very long time since my love and I have had a vacation alone, I still feel an overwhelming sensation of warmth, happiness and camaraderie.  These photos represent a real emergence into a world of fellowship that we’ve come to need and enjoy.  Back in 1997 there was no Facebook. Now we are able to share and console on a world-wide scale, knowing that we will NEVER be alone—no matter where we are.  That is one blessing among many that I am filled with.

To learn more about Cindi Rogers visit:  www.mrsrogersworld.com

Monday, April 3, 2017

Why I Don't Want the World to See My True Son


My morning started at 3 a.m. with him waking, heading straight for the bathroom, thinking it was time to get up.  Hearing him with the one ear that I keep open, I dragged myself to his bedroom, grabbed his pillow and “woobie” and guided him to the family room couch where I hoped he might go back to sleep.  I tucked the covers around him, then spoke the words I’ve spoken about a million times in the past….”It’s nighttime—not time to get up yet.  Go to sleep.”  I placed a nearby pillow over the lights that reflect from the DVD/VCR combo that sits directly across from the couch where he lay, hoping my efforts would incite further sleep.  I briefly scanned the rest of the room to make sure I had not overlooked any other sleep detractors, then slithered back to my own bed.

Of course, this kind of problem-solving may not seem strange, unusual, or even unconventional to one who has children.  Trying to get a child to sleep in their own bed or sleep regular or continuous hours can be a years-long project for a typical child.  But trust me…this is not normal or typical or conventional.  Our son is 26 years old.

Even though he is 26 years old, a diagnosis as an infant of fragile X syndrome and later an additional diagnosis of Autism, his genetic fate has been known to cause widespread sleep issues, as well as, on rare occasions, some pretty aggressive behavioral problems.  Our couch routine is a highly unorthodox evolution of trial and error that works about 80% of the time. The unorthodox or unconventional part of the whole thing is that he IS 26 years old.  A 26-year-old with a genetic developmental disability that will be with him the rest of his life……..and ours.

When we look at a diagnosis of fragile X syndrome or Autism, one person’s diagnosis does not automatically inject all of the “check list” items to every individual, but, in the case of our youngest son of which I speak, it has.  (To learn about the traits of fragile x syndrome, click here https://fragilex.org/fragile-x/fragile-x-syndrome/ or it’s relationship to Autism, click here https://fragilex.org/fragile-x/fragile-x-syndrome/autism-and-fragile-x-syndrome/).  We also have an older son, 28, with the same diagnosis, but he’s as different as night and day!  Go figure.

I am a very strong Mother who has taken particular pride in my ability to learn, create and teach specific methods and approaches that have, for the most part, afforded my two sons a high quality of life, despite this genetically passed predisposition.  Today, I blame myself.  Today, I am personally responsible for molding a negative outcome to a specific situation.  Me.  The advocate, mentor, teacher, friend. 

Suffice it to say that the couch routine did not work its magic this morning.  Another visit from him in our bedroom at 4 a.m. and then again at 5 a.m., strongly indicated that our efforts had failed.  The day had begun, despite our objections and diligent efforts. This small failure I can live with.  We’ve failed on this today, but we can live with it.  We’ve learned to live with it.  On a normal day, our son, given every other accommodation, could go through his day quite successfully, despite this one small failure. But, this is just one of many challenges we face every single day.

Three weeks ago, we, as his court-appointed legal guardians, received a letter stating that he HAD to appear before a federally appointed medical examiner to determine that he was still disabled.  That appointment was today, Monday, April 3rd, 2017 at 9:45 a.m. 

I will never get used to the idea that we will need to face many days when we are required to meet with this person or that person in order to prove that our son is disabled; question after question driving home the fact that he will never do this or that; never live alone; never be safe alone; never be married; never give us grandchildren; never….never….never. 

Each day we wake up, stretch our arms and welcome a new day when we can defy all of the restrictions on our son and strive to help him overcome every single little thing that tells him he cannot, when all we want to do it make it possible.  But we do.  Several times a year, whether it be when our kid with a disability is in school, or as an adult when we need this service or that, we are required to shift our minds toward every little tiny thing they cannot do by themselves.  This is one of those times.

For every other single situation or incident, I would do everything in my power, spend countless hours researching, planning and preparing him to have a successful outcome.  I would prepare a visual schedule, using symbols that make sense to him in his world using tried and true methods.  I would go over the schedule with him ahead of time and even make a reminder on his monthly schedule so that he would have time to allow his physical response to acclimate, essentially minimizing any negative behaviors.  In the past, I’ve done this to help him with his volunteer jobs, his self-care, his doctors appointments, social activities and every other conceivable part of his life.  Not today.

Oh, yes, I called 10 days ago, but was told that no information could be given in advance as far as what the appointment would look like.  Yesterday, as I anticipated today, my mind shifted back to when he was young and we didn’t know all the right things to do and use to help him.  My emotions remember well a certain visit to a doctor many years ago that resulted in him having to be restrained due to extreme aggression.  I also remember the fact that I had not prepared him in any way, shape or form for that visit.  Anxiety welled up inside me as I relived that day in my mind. How could I possibly make today a positive outcome with no information?  I have no idea.  I am no magician.  I am just a Mother with a typical brain and a pretty severely disabled son that does not understand many things in his world on a normal day, given no accommodations.

This morning, as the two of us got into the car, with only his backpack in tow, I minimized what verbal information I gave.  I had nothing to go on.  I didn’t know the doctor, I didn’t know the building, I didn’t know the process.  How could I help him? All of the things I had used in the past were not available to me today.  I had to give the one and only thing I knew.  I said, “Mom has to go talk to a lady.”  I carefully chose these words knowing that it is a new phrase that I have not used before. It wasn’t a predefined phrase with historically important meaning for him—no negative or positive connotations. I know he is listening, but he says nothing.  I know he trusts me, but at this moment I have no idea if I trust myself.  We drive in silence the rest of the way.

As we pull up and park in front of this unfamiliar building, he is making a noise that I am all too familiar with….a sort of nervous grunting noise.  Based on past experience, I know this is not good. 

I remind him that, “Mom has to go talk to a lady. Are you ready to go in?” 

He replies, “No!”  I remove my seatbelt, grab my purse and open my door, determined to push through.

I say, “Get your backpack. Let’s go see the lady Mom needs to talk to.”  He does as he’s told.  He’s still making the sound….that warning sound.  

We walk to the front door of the building, and I open it, waiting for him to go in first.  He enters the building and I point in the direction that we need to go….Suite 100.  I push the heavy door open to the office, step inside, and he stalls in the hallway.  I know he is visibly nervous and anxious about all of the things that he is unfamiliar with.  I do not know how to help him.  I don’t know the facts myself.

I wave him in and he moves into the small, stark, stuffy room, furnished only with a row of chrome-framed chairs with black vinyl covers and an old-fashioned candy vending machine—the type that you slide a coin in, turn the rectangle-shaped knob and the candy dispenses behind a little metal door. On one side is a glass-covered window behind which a lady sits.  She slides the window open and asks his name.  I give it, and she passes me a clipboard with four closely-filled pages of information.

She says, "This needs to be filled out in its entirety with every space filled in, even if it’s an N/A”. 

Before I can even sit down, he proceeds to push the candy machine back and forth on its carefully balanced pedestal, nearly knocking it over, causing me to inhale sharply.  I rush to it, reach my hand out and steady it upright, forgetting to exhale. He kicks me in the shin, then paces back and forth. I motion for him to sit next to me in a chair.  No dice. He is searching my face and eyes for some sign of what we are doing and when we will be finished so he can get back to his familiar place.  I move back toward a chair in an effort to begin the paperwork. He kicks me again.  I shift to miss another kick and ask him to sit once again. I know his behavior is only a form of communication.  Nothing I say can make it ok for him.

The window slides open once again, and the lady says they have a back waiting room and to please follow through the closed door.  I stand, motioning for him to follow with his backpack and he does.  We are directed to another row of chairs behind a half-partition.  I sit and he paces then kicks me swiftly in the foot.  I say a few words in protest, then he walks back toward the first waiting room, opening a cabinet on the way, like it was hiding a secret escape. 

A doctor appears, grabs the door of the opened cabinet, closes it and says that it might be better if we go back and wait in the first area until our turn—a suggestion I knew would only raise defcon levels higher due to the maximum number of transitions allowed for my son.

We barely reach the first waiting area when I feel another swift kick to my other shin. Some newly appearing papers sit atop the counter that leads to the glass window which he sees and instantly swoopes to the floor.  I see his head shift, and the candy machine is once again a target.  I gasp and reach to save it just in time.
 
Another lady suddenly appears and suggests that perhaps this kind of behavior is not acceptable.  I feel tears come to the bottoms of my eyes, and apologize, but remind her that he is unfamiliar with his surroundings and that I am doing my best.  She submits that the car might be a better place for him.  I agree wholeheartedly, as I swing my purse to my shoulder and grab the untouched clipboard.

He is never so happy as to exit that building and migrate back to the comfort of his car.  He is still anxious, but relieved to be “out” nonetheless.  He gets in the car, buckles up and sits, waiting to hear what is next.  I explain to him that I still have to talk to the lady, but I need to finish the papers first.  I stand outside the car in the fresh breeze while I attempt to fill in each space completely, leaving nothing blank as I was directed to do. 

I finish the paperwork, lock the car, leaving his window slightly ajar, and return to the office alone, still feeling a bit embarrassed.  I realize as I am walking in that these people have never met my amazing son; the one who loves his volunteer jobs; the one who can make a basket with his basketball team; the one who savors his life on earth set in the comforts of his rote, structured life.  But, I stifle those thoughts while I am escorted into a Doctor’s office to once again describe in detail, all of the things he cannot do.  I am forced to think of him as compared to a peer of his same age.  They will never see anything of him except those behaviors that he exemplified, characteristic of his genetic disability, yes, but not the real him.  The lovely, huggable, smiley, charming, him.

This is the him that I never want the world to see.  This is why I work every single day, and my husband works every single day, and those that love him work every single day, to make his world manageable……and wonderful…for him.  He is not the sum of these parts.  He is the product of those who love him and those who make the accommodations necessary to allow him the awesome quality of life that defines him.


I don’t want the world to remember him solely by what is written on the pages of documents possessed by government agencies that provide him the resources he needs.  It must be presented gently and carefully by those who know him day to day, week to week and year to year and teach him what he needs.  Those who love him are responsible for helping him put his best foot forward and overcoming every little challenge he is capable of overcoming.  There will be some winner days and some loser days.  This is the life of fragile x syndrome and Autism for us.  This is what we strive for every single hour of every single day.  This is the real fragile X syndrome and Autism.  As dutiful messengers, we will strive with hope and love in our hearts to broadcast on their behalf:

Our children are more than just the sum of their parts; good and bad; frustrated and passionate; successful and determined.  


To learn more about Cindi Rogers visit:  www.mrsrogersworld.com

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!


To learn more about Cindi Rogers visit:  www.mrsrogersworld.com

Sunday, August 28, 2016

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 visit www.mrsrogersworld.com

Monday, April 18, 2016

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.
(Click here for information on my book: 
http://www.amazon.com/Becoming-Mrs-Rogers-Cindi/dp/1497373409/ref=cm_cr_arp_d_product_top?ie=UTF8)

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 fragile X syndrome please visit https://fragilex.org/
To learn more about Cindi Rogers go to www.mrsrogersworld.com