A Long Road Travelled

Opening Note: For those of you that have just listened to my story in Orlando at the International Fragile X Conference, please note that a special offer is included in this blog just for you. You have the opportunity to purchase a personally signed copy of my book at a discounted price for a limited time by clicking on the Toolbox. Orders will be filled once I return home and shipped out soon after! Happy reading and welcome to Mrs. Rogers World!

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I’ve always set goals for myself, even from a young age. That’s not to say that I’ve achieved every goal that I’ve set! I've failed at some and some are still in the works! But, I find it personally motivating to have a goal.

 Achieving a goal becomes exponentially more difficult when you are gifted with two sons, Jake 35, and Joe 33, born with Fragile X Syndrome. Over the 33 years since our diagnosis in April, 1991, I’ve written a ton, including a memoir "Becoming Mrs. Rogers-Learning to Live the Fragile X Way", about our life since that day. My husband, Chris, and I still strive to set goals for ourselves as well as for our family, even though it requires A LOT more preparation, time, skills and patience.

It’s difficult to put into words the tremendous amount of learning we have done over those 33 years. When the guys were first diagnosed way back in 1991, there weren’t a ton of standard practice and widely-used methods available. As the years passed, more and more became known about how to best apply therapeutic methods to individuals like our sons. We began the journey of learning the many tried-and-true strategies and methods available.

It’s taken all of these years to understand, learn, practice and apply the many methods to everyday life. We call it “Living the Fragile X Way”. As we became more and more aware and familiar, I developed a sort of “toolbox” that I call “Cindi’s Tool Box”. Chris and I, both, carry this toolbox every. single. day. These are the essential tools that we use to help our sons implement and carry out day-to-day tasks, recreation, learning and life skills. Sometimes, we use more than one tool at a time!

For the first time ever, I am happy to share this very complete and interactive toolbox with others, and I hope that by doing so, it will help other families in a similar situation to try a tool or two!

Click here for full toolbox!

Learning about and eventually implementing these tools has been the key to reaching many of the goals we’ve set for our sons to-date! It has helped Chris and I embark on some pretty advantageous goals!

It became pretty clear early on in our journey that day-to-day life was going to be a challenge. Chris and I knew that there was no way we could possibly isolate ourselves within the confines of our home just because it was the easy road. Sure, it would have suited Jake and Joe just fine, but I don’t think that our marriage would have survived it. We had to set a goal to be able to successfully venture out.

My memoir details many of the subsequent lessons and trials that we went through to be able to get out of the house, and eventually, travel. It also tells many stories about how we began the migration from car to tent to camper to RV in our quest to make the boys' world bigger. One of my early blogs, "The Importance of Rocket", recorded the memory of an early camping trip and subsequent successes we experienced with rving. Since that first trip, we’ve been lucky enough to have travelled to all 48 of the lower United States! Granted, it took years, but it’s been an amazing progression and transformation from those early days.

So, naturally, the next goal became how do we get to state number 49….Hawaii??? This would be a monumental goal. The guys had never flown on an airplane! Learning to fly  would be a whole other goal all by itself before we could even think about going such a distance! We began the task of breaking down the many small goals that would need to be hurdled before we could set about actually flying to Hawaii! Let that goal commence!! If you want to read every detail and the progression, here's the order:

-It's A Lofty Goal

-With Gratitude to Mr. Rogers

-Worries of a Parent Never Cease

-A Hard Landing on Planet Reality

All caught up now? It’s a LOT to read, but all things we have tried, failed at, tried again, and finally succeeded at took an immense amount of time! As you have read, it took us an entire year to make this dream come true! It was all worth it in the end! Our sons are highly affected by Fragile X Syndrome, so our life has not been easy! But, it’s certainly been productive and adventurous! Honestly, now that we’ve had a chance to submerge ourselves in this Fragile X life for 33 years, we don’t know any other way. So, we plug on setting new goals. What’s next?

Since that trip to Hawaii, we've flown to several locales in the United States, and we've been to Mexico many times. We thought "well, now we’ve done 7 hours to Hawaii….why not really push the limits and go to Europe???" Ok! Now we have a goal! Ok, wait. That’s a gargantuan goal! What tools will we need? How can we break down the steps? Who can help us? These are all of the questions we asked ourselves.

One huge factor that we had on our side was the fact that our long-time, dear friends Doris and Phil were planning to be in Spain for the winter of 2023 and Spring 2024. This would certainly be a motivating factor for both boys and one that we would use when we created a visual routine and verbal prompts for the trip. Visuals are a critical part of our daily routine. It helps the guys feel safe and helps them understand what they are doing, how long it will last and what's next.

There were already so many familiar visuals we could use from past trips, such as, “hotel”, “airplane”, “restaurant”, “luggage”, “bus”, “train”, “backpack”, “movie” and many more. These familiar things would be the touchstone to creating an environment of safety and familiarity. We have learned that it often doesn’t matter that the hotel might look different or that they journey is further, as long as the boys have the familiar terms to cling to. The date was set for February, 2024. Let the prep begin!

As I researched the flights from our home in Denver to Spain, it became apparent that this trip would require two flights no matter where we landed. It also became apparent that I needed help in arranging the details of this one because there were too many options. I contacted a small travel agent near our home and, voila! Magic happened! A nice lady named Tracy met every requirement we requested.

We would fly on day 1 from Denver to Frankfurt, Germany. Jake and Joe had never done a connection and we suspected that it would be too many transitions for one leg to do so. We booked a one-night hotel stay right in the Frankfurt airport so that we could rest from the jet lag, have some down time from airplanes and eat some German room service! We checked all of the boxes. The flight was arranged. The hotel for the first and last nights were booked.

Now, the real worrying and sleep loss would begin. Thankfully, we only had 3 months to prepare, which meant that we could only obsess over details for so long. The boys can't really handle knowing about something so far ahead (their threshold), so we limited conversation about it so as not to create anxiety. We had several What's App video calls with our friends so that everyone was comfortable with each other. 

About a week prior to departure, I created a version of our usual monthly calendar that hangs on the refrigerator. It revealed that we would be making the trip. The first day showed "airport", the second showed, "hotel", the third showed "airport", and finally, Doris and Phil. This top level calendar is not designed to give all of the details of each day, only the general program for the day, i.e., "home" day, or "work" day.

Then, I set to work creating a very detailed version of our "All Done" method. It took 4 pages to get us through those same 4 days. If you read the blogs linked above, you saw photos of examples that I did for Hawaii. These were no different. It was just relevant to this journey. Other than getting the house and our business affairs in order (including the dog), we were ready to go!

The day before our departure, I reviewed the "All Done" method to the boys. Chris and I used the same descriptors for familiar things, and we added in anything new using minimal language. Thankfully, everyone slept well the night before (which is not always the case)! 

The next day, we boarded the huge jet that would transport us across the Atlantic. In hindsight, one of the best things we decided to do was to save and redeem ALL of our United miles in order to upgrade the 4 of us to first class. This exorbitant move was a lifesaver for our first overseas trip because it allowed us all the opportunity to lie down. Chris and I didn't get much rest on the 10-hour flight to Frankfurt, but we all were happy, fairly calm, well-fed and content. We were tired, but we managed to navigate the biggest airport we’d ever seen, get our luggage, walk about 1.2 miles and check in to our room at the hotel without much of a glitch. Using a cart for the luggage turned out to be a huge mistake because the elevators were scarce, but we made a note NOT to do that when we returned. Lesson learned.

Day 2, we navigated the Frankfurt airport once again to find the correct United check-in desk, checked our luggage, boarded a bus to a rain-soaked jetway to board the airplane and we were off! The boys slept their way to Spain and it all went super smooth! It was merely a 2 1/2 hour flight, which is child's-play for these guys!

The Alicante airport was very small which allowed an easy walk to the rental car counter. We loaded up the car, programmed the GPS to the agreed meeting place and drove in the rain to meet Doris and Phil. The guys were so content and we felt proud that everything went so smoothly! They were elated to see our long-time friends.

We enjoyed 18 glorious days between the Air B&B house we rented on the coast and overnights at several nearby towns. We even managed to drive to Madrid, stay over for 3 nights and get back to the coast without incident! (I know I overuse the ! but my passion runs deep!) So many incredible milestones were reached during this trip.

Joe, who’s been our incredibly picky eater his entire life, tried 7 new foods during this trip! SEVEN! He's 33 years-old, and in almost all of those years he's consumed 95% of his diet in carbs! This trip he ate and enjoyed steak, pork chops, shrimp, plain chicken breast, wasabi almonds, Spanish almonds, and ate a bite of salad! We even documented them because we wondered if someone had switched out our son. I’m going to go out on a limb here and hypothesize that his reason for being so experimental and open was due to the fact that he felt safe and supported! We utilized many tools throughout this journey—we never stopped using them.

Examples of tools used are: The aforementioned "All Done" method, we utilized video modeling by watching "Mr. Rogers Goes on an Airplane" (as we have many times) the night before we departed, we practiced "First/Then" in our daily routine when necessary, we constantly use "Ready-not-Ready" to prepare for a transition, we made sure there was physical activity every day to support that "Movement/Rec Activity", we got in some heavy work or "Sensory Supports" whenever possible (grocery store), we reinforced conversation with "Fill-in-the Blank" often to give the guys a chance to participate in the conversation, and lastly, we practiced calm and patience as much as possible. All of these tools made the journey with us which made the long trip a full-on success. 

We were consistent and trustworthy in the utilization of tools, which I think is a huge key to success with Jake and Joe. That trust has been the toughest and most obscure element to the many successes over the years. It’s extremely difficult to explain to people or to teach, but IT IS ESSENTIAL! Being consistent and honest when we deliver a visual schedule or steps to complete a task is so important. This trip was a clear reflection of that.

Our return to Denver was the exact reverse of how we left. Each step went off without a hitch. Kind people were everywhere around us—we just had to look. We breathed through the unexpected and plugged on. Jake and Joe received stamps 19 and 20 in their passports, and the fact that we were able to make their world bigger and fuller was worth every minute of sleep lost over worry, every dime and every gray hair.

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

The Gift of Humanity

Our thirty-three years of living an unconventional life full of challenges has brought out some of the very best qualities in others that we have come in contact with. Of course, we’ve seen a few unkind people, but the vast majority of people have gone out of their way to show us unrelenting kindness. I tend to focus on the good stuff (in case you hadn’t noticed).

I could share endless examples of unexpected kindnesses; from the incredible people at the timeshare we love to frequent in Cancun; to strangers who anonymously pay for our sons’ meals at Chili’s when they're with one of their providers; to the lady at the bookstore who saw the love of a certain book in Joe’s eyes and offered it to him for free. Angels, as I call them, seem to follow us around. This past Friday was no exception!

Chris and I had been corresponding with a local hotel in downtown Denver as a prospective site for an upcoming event. I had emailed back and forth with her for some time in an effort to set a date when Chris and I could go see the venue. We were having some difficulty due to the fact that she worked 8-5 Monday thru Friday, and we hoped to visit during our monthly date night on a Friday after 5. So, after going back and forth, I finally decided to call her. There had not been an opportunity for me to share any intimate details of our life and what precipitated our need for a specific time or date, so I shared the fact that we have 2 adult sons with special needs and we needed to meet on an evening when we could have someone stay with them.

There was a moment of silence after which she said, “What if we comp’d you two adjoining (we need connecting rooms at all times) rooms at our hotel on a Friday of your choice, and you both could meet with me and my Supervisor and see the venue?”

Of course, I was floored by her offer and we accepted at a date 3 weeks in the future. That date was last Friday.

We arrived at the front of the hotel’s valet parking where we saw 2 ladies standing at the entrance of the hotel. I was driving so I exited the car first. Jake, on my side, also got out of the car quickly (he’s always excited to be at a “tel”), followed by Chris and Joe. 

One of the ladies called out, “You must be the Rogers family!”
I replied, “Yes we are!”
“Welcome!” she said

Jake was leading the pack toward the entrance, and she said, “Hi, Jake!”

Observing the bag he was carrying (because he’s always carrying some kind of bag), she added, “Do you have Mister Rogers in your bag?”
Stunned, I asked, “How did you know about Mister Rogers?”
“I know lots of things about The Rogers Family”, she said.

By now, the guys were 10 strides ahead of Chris and I headed to the main desk, so we picked up our pace and hurried inside.

As we arrived at the desk, the staff also welcomed us by name with the utmost enthusiasm. We greeted in turn and smiled. Before we could even present our credit card, they offered Chris and I a small box labeled, “French Macarons”. I carefully lifted the lid, exposing one dozen little round cookies decorated to look like orange basketballs! Inside was a small paper-like note (edible) that said, “I saw you in Mrs. Johnson’s class and wondered if you’d like to give me a call sometime?—Cindi  There was also a second note with these same words translated into French!

After Chris and I read these words together, we looked up at each other. Shocked into silence, I somehow managed to say to the group of people around us, “You must have read my blog!”

“No.” she said. “We all read your book!”  Becoming Mrs. Rogers (for those of you who haven't read it)
“You, what?” I said. “No way! That’s amazing!”

By now the guys were more than ready to get to the room, so, of course, I forgot to ask how, why, what?! As we rode the elevator up, Chris and I felt slightly stalked.

We get to our adjoining rooms, enter on our side first, and immediately see a card with our names on it on a desk just past the entryway. Chris opens it, and we read together. We were flabbergasted! We could not believe that someone would take the time to learn so much about our life and our family. They had followed the playbook precisely as written in my memoir.

After a couple of minutes of getting everyone and everything into the room, we see another card on the boys’ room desk. Our look of shock and surprise continues.

 

We loaded the Mister Rogers dvd into the player and got them occupied. 

A few minutes later, we hear a soft tap on the door and Chris answers it. A Room Attendant enters and sets down a large tray on the table in the room. We thank him, hand him a tip as he exits, look questioningly at each other and gaze at the incredible tray. They've read every exciting part of our life and recorded it into sweet treats!

 

At this point, we are overwhelmed by the immense interest that these strangers have invested in learning about our daily life, our life-blood, our world. Yes, they were trying to earn our business, but there was no requirement for them to take this kind of dedicated interest in our family.

Four O’clock rolled around and it was time for us to head downstairs to meet with the people who would show us the venue and chat with us about the details. The boys could not have been more excited to finally get to ride the elevators once again. 

We reached the second floor and followed our hostesses to the ballroom. They introduced us to another person who was in charge of the meeting/event rooms and they led us to a table where the guys could sit while we chatted. As we approached the table, it was clear that there, again was another surprise from our past. 

Chris and I laughed out loud at the sheer attention-to-detail, and on-point progression of our love story from way back in 1977. We needed a moment to just soak it all in and appreciate that someone took the time to honor US. We spend so much time focusing on Jake and Joe (rightfully so), that sometimes we forget how our life began. Then, along came some astonishingly kind people to remind us how it all started.

After a few minutes of just talking through our monumental gratitude, Chris and I tried to absorb the kindnesses. We had never in our lives experienced such an intense commitment to us…..to our family….to others learning about what we share every day. These strangers had no connection to Fragile X, but they somehow decided to take their time to glimpse inside the life of our family. 

It doesn’t take something this monumental to remind us that there is so much good in humanity….but it sure doesn’t hurt! We are eternally grateful.

I am constantly reminded that, even though there are hard parts to this life of challenges, it’s important to focus on the good stuff.

“If you could only sense how important you are to the lives of those you meet; how important you can be to the people you may never even dream of. There is something of yourself that you leave at every meeting with another person.”
― Fred Rogers

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

The Month of April is More than Just the Word Autism & Disability--Mrs. Rogers World

Some mark April as Autism Awareness Month. For Chris and I, it marks the anniversary of our sons' diagnosis of Fragile X Syndrome (the number one cause of genetic Autism) 32 years ago.  The other day, I also realized that we were 27 years old when we heard the dreaded words, “Your son has what’s called a full mutation of a genetically passed gene called Fragile X Syndrome, and there is an 80% chance that your soon-to-be-newborn son will also have it.” I was pregnant with our second son at the time.

The significance of this month is a bit profound…..it means that every day, every month, every year after this will mark a tipping of the scales. It will mean that more than half our lives will have been spent in the throes of disability. That one word will define our minority past, every moment of our present, and be the driving force behind our future.

I vaguely remember the past since that day in April so long ago.

Our past began with the vow of marriage in August of 1985…..almost 39 years ago.  We immediately bought a little house that we made into a home, and where we still live today. Four years later, we welcomed our first precious, beautiful son into the world.

We never thought we could love something as much as we loved him. His little vulnerable, warm body enveloped us and made us even that much more motivated to do whatever it would take to make his life as close to perfect as possible.

Our little guy ruled our every moment with his cooing and smiling and his need for our care. We gave him all we had to give…but that was not enough. 

By the age of two years, he was not saying one single word. He’d already had numerous (too numerous to count) ear infections, to the point of needing a daily dose of antibiotics to keep them at bay. He was developmentally delayed in many aspects, including walking. We sought treatment, therapy and experts to help us figure out how something so perfect could be struggling. These challenges were beyond our ability to help on our own.

Suffice it to say that, we did get help and we did get answers.  The answer came in the form of a life-defining diagnosis….Fragile X Syndrome. Having a name for it somehow made it more real.

After a few months, tests also confirmed our fears...it was determined that our newborn son would also have the genetic curse. Our lives would forever be transformed. Our present and future was written. 

Some four years later, after Chris and I got our “poop in a group”, we began a whole separate journey deep into the world of Fragile X Syndrome. I joined the local support group; I read all I could about next steps, and we spent countless hours with therapists and doctors. 

Ten years in, we had endured numbing challenges, pain and many tears attempting to help our sons reach all of the potential they could muster. These were the challenging years that blurred the memory of those dreams we had all those years before. We lost sight of our own dreams and ourselves while immersed in the intensity of caring for the things we loved so much.

We were inherently obliged to do everything possible until we could do no more, and we felt like the daily situation was no different. We believed many of our efforts were in vein. 

We spent every waking moment immersed in proven methods and approaches in an effort to help our sons and the world around them. We spent countless hours helping others learn about our sons in an attempt to make their world bigger and fill it with people who love them. This took another ten years.

Over the past 33 years, Chris and I have learned a thing or two about disabilities, Fragile X Syndrome and our sons:

-We know what an IEP (Individualized Education Plan) is, but that is only one-in-a-thousand acronyms that have become a part of our daily dialogue;

-We know that our boys CAN learn with the right application and attention;

-People affected by Fragile X Syndrome are incidental learners;

-Using a full scale of both visual and audiological methods to communicate is essential for our sons;

-Every behavior IS communication;

-There are some incredible approaches by some amazing experts that DO work, such as, ready-not-ready, first/then, pic sims, social stories, video modeling, side dialogue, all-done method, sensory support, peer modeling and the rhythmic approach. All of these are part of our daily life;

-Love can only carry you so far—we have to put in the work to affect change in outcomes;

-There is an amazing thing called sensory integration, and the recipe is magic;

-The relationship between the parent and teacher can be an incredible team, so hold on because you have 16 years of endurance exercises.

-The real learning is by way of the parents….not the children they raise.

All of these things were a very important part of our sons’ success toward living the quality of life that they currently live, but the true learning was for Chris and I. In hindsight, I believe some of the biggest lessons learned were involving us as parents.  We had to see the reality in front of us and learn not to focus only on what was missing in order to move forward.  

We were backed into a corner and forced to learn how to cope as a couple, as partners and as teammates. The ultimate challenge for our marriage was in how to cope at different speeds and still keep pace with each other. Some of the more poignant lessons were:

-rearranging our priorities individually and as a couple;

-coming to terms with our immediate and future fate as parents of two sons with life-long disabilities;

-we desperately need to lean on each other through the tough challenges—we are the only ones that truly understand the circumstances;

-helping each other through the grieving process, only to be thankful we both made it to the other side;

-discovering that sleep is often way more important than sex when the boys were young—a fact that was a difficult reality, but this also gave us something to look forward to;

-learning patience was one of the most difficult, but most helpful skills we gained through our children;

-realizing that it was pertinent we rearrange our financial priorities in order to plan for our sons’ futures;

-learning how to give up the old dreams and make new ones (that have turned out to be BETTER!)

All of this learning has taken us 33 years. Nothing happened quickly. But, here we are…standing upright, breathing in and out, surviving and thriving.  We are stronger for all of the experiences. We’ve made it this far.  We learned how to have hope when we couldn’t see any. We’ve grappled with issues that none of our friends with typical kids will face. Now, we look to the future.

What does our future look like? It’s hard to imagine sometimes. We’ve done a pretty good job as parents in making a plan for the guys.  If nothing else, we've done our best. We’ve spent lots of dollars and countless hours preparing for their living situation and made a plan for what will happen to them when we are gone. But, what about the time in between? In the past, we could not see anything very clearly when it came to that chapter.

Thankfully, now, Chris and I are able to see something….a glimmer of hope for a retirement just for us.  There is still probably another 5 years of research, heartache and learning, but it’s there…..

It won’t look like our friends’ retirement.  We won’t be able to pick up and go across the globe whenever we want. We won’t be able to go without worry or checking in at home (that’s where the guys will live when we retire—they will kick us out). Our children will always be our children--they have no plans of “flying the coop”.  But, it’s a small, yet-to-be planned glimmer of a chapter without the day-to-day hands-on management of the guys’ lives.

We’ll take it.  Together and as a team, we’ll get there.  There is hope that the final chapter will not be all about disabilities. That sight looks beautiful from here.

HELLO APRIL!

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"Love isn't a state of perfect caring. It is an active noun like 'struggle.' To love someone is to strive to accept that person exactly the way he or she is, right here and now.”--Fred Rogers

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

Creating Jake and Joe Community

 

The internet is filled with helpful facts about Fragile X Syndrome, and they are all appearing in concert with Fragile X Awareness Month. You can find everything from transitioning your child to school, therapy methods, toileting training strategies and all of the genetic information you so desire.  But, you know what’s not listed anywhere?

How to die peacefully as a parent of special needs child.

Chris and I have worked tirelessly for 31 years since diagnosis to learn and implement what works best for our two guys. We’ve adapted every aspect of our life in hopes of giving them a world that takes all of their needs into consideration. Truth be told, time ticks away but our guys are stuck in a time warp. As they live a high quality of life in the bodies of men, strongly affected by a genetically passed cognitive disability, their routine is incredibly stable and smooth. In contrast, we are aging closer and closer to our assembled reality.

Eight years ago, I wrote my memoir that outlined our plans for our sons’ future as it was known back in 2014, but the specifics were a bit murky.

As I reread one of the last chapters in my book, the words resonate even more than when I originally wrote them. (page 278)

“….The point is that we can see a future. We can envision success. We can even visualize the actual steps now…..

 

When I think about the actual implementation of “the plan” though, it scares the crap out of me. The reality is daunting. Can it be done? Who will help? Will there ever be anyone who will love Jake and Joe as much as us? Will they be well taken care of? What if there is a difficult behavior issue that arises? Will anyone know how to manage this or what tools to use? These are scary questions—scary because we don’t know all of the answers.” 

With the passage of time, we’ve been able to fill in a few blank spots, at least the physical steps. 

In January of this year, we had the opportunity to purchase the home across the street from our current house. Even though it wasn’t an easy decision, it seemed in complete alignment with our life-long plan for “Jake and Joe community”. So, we’ve spent the past 5 months renovating the house in hopes of allowing 2 caregivers to live there. We have always envisioned having 2 caregivers live in our house when we retire, but this additional home will allow a full team to occupy space in a very close proximity to meet, hopefully, every possible need.

We anticipate that there will be two people to oversee the daytime routine across the street, and two others to manage the nighttime care here in our house. It is our hope that this will also allow for backup in every situation. During the past several months, I have been able to see clearly that there are many possibilities for Jake and Joe community. The reality is that we will not know every hurdle until we can put the actual plan in place.

Even after every foreseeable detail has been addressed, and every person involved is in place…we still cannot know every scenario. We cannot anticipate every possible minute, hour, or day. Without these answers, how can we find that necessary peace that Chris and I so desperately need?

With a majority of the physical pieces in place, now comes the really hard work….the mental preparation for all four of us. This is the monumental task.

Who will know when Joe needs a hug, or when to back away because he might bite you instead? I do. How do I teach that? There are a million details, but it’s the little things that I stumble over. Like, when we tuck the guys in at night (yes, we still do this). Likely a caregiver will not do this. I know we need to begin to back away, but my heart won’t allow me to right now.

It’s the little things….each and every detail needs to be addressed. On the other hand, who in their right mind would want this life? Will there ever be someone who wants to give up years of their life to take this on?

We spend our days trying to live our best life without exuding worry or fear even though it occupies the back depths of our mind. We are filling Jake and Joe’s years with memories and experiences that will hopefully stay with them long after we are gone. But, the facts still float around in our heads. Chris and I know that likely one of us will be left to finish it alone. There aren’t many couple that pass away together. In the meantime, we are working together as long as we can to see our plans through without that guarantee of time.

We are banking on the hope that we will live long enough to see every detail through, but no one is guaranteed tomorrow. We are awash with fear every day even though we exude hope through our actions. 

What we are left with is faith; faith in our ability; faith in our friends, family and caregivers to finish what we started. There is no guidebook for this chapter. We have to wander aimlessly in the dark, feeling our way each step.

The darkness is so terrifying, I imagine it is comparable to the sheer panic one might feel just before jumping from a bridge while tethered to a bungee cord. You know you’ll be ok, but there is still that 1% of contagious doubt that courses through your body just before you plummet. In theory, we have 5 years before we retire. Then, shit gets real. We can’t wait to be ready. We have to keep plugging on. The eminent clock is ticking.

There may not be a point of absolute peace. Now, I wonder if everything will ever be done to the point where we can say, “Ok, we are ready”. At present, we have no idea how we will fill this new home with kind, capable people that will care for the most precious gift of our lifetime. We already know that no one will love them the way we do. But, how do we begin to take the tiny steps necessary to pass the baton on to the next custodian? On paper, I estimate the transition process to take 2 full years once we begin.

I pray that we have that many years to see our plan come to full fruition—to see our sons happy and enjoying their life without us. I know the truth in my head. I know that I have wasted mountains of energy in the past worrying about things that always work out. I know that Chris and I are capable to doing this.  The life of a special needs parent is never done. It sucks. But, we will do it. Our purpose is defined. Step by tiny step.

We count down the moments we have left, even at our “young” age….because we must. We try to focus on enjoying every moment, doing things we all like to do together, not knowing what the future will grant us.

Now, this is some real Fragile X Awareness.

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

Christmas Blessings and Angels

2021 marks almost two full years of this frickin pandemic. Coincidentally, December 19, 2021 also marks our 21st airline flight with our guys! This is quite monumental for 2 guys with Fragile X that never flew before 2016!

As we celebrate Christmas in Cancun, I find myself reflecting on the two years we've faced, like everyone in the world, and my emotions flow first toward sadness.

I'm sad that we've known 5 young men who lost their will to live during this dark time, including our Nephew. 

I'm sad that the small-but-full world our boys live in day-to-day grew even smaller. For some with disabilities, it's been zero quality of life in this world.

I'm sad that I am not able to physically hug so many people that are important to me.

I can't wallow in that mind-set, obviously, so I choose to focus on the thousands of blessings I have to be thankful for, especially the people....the Angels. The Angels who are always there to help us, even in minute ways.

There's the Secretary at the church where Jake works, Miss Tammy, who often takes time to give him a full-page "print" of Mister Rogers, which he proudly and gently carries home.

There's the waitress at Chili's that is truly a part of our family now, Miss Jen. She finds time to text me every Wednesday to make sure we are coming for a visit so she can have our usual table, drinks at the ready, all prepped and saved.

There's one of Jake's favorite people and hair stylist, Lisa, who adoringly chats in "Jake-speak" every time he gets his haircut (4 weeks on the dot), and ends his visit with a hoodie hug. 

Or, Joe's barber, Eddie, who makes him feel like Norm from "Cheers" every month, yelling along with all the guys in the shop, "Joe!!" Then, knuckle bumps all around.

There are numerous friends and neighbors that we have clung to during this time in an effort to assume some semblance of a new normal. We've shared numerous meals and delightful company together.

Our dear friends Tim and Kathi are always a soft place to land no matter what the situation, making travel especially adventurous.

Of course, we have the biggest daily blessing of all in our Daniel and Amanda who keep a watch over the guys like their own siblings. There is no possible way to equate their commitment in words.

The folks at the Ace where Joe has worked for going on 13 years, are amazingly dedicated to making him feel useful and loved.

If you've been kind enough to follow our whacky, quirky stories for any amount of time, you know we celebrate Christmas in a most unconventional way. We never wait until December 25th to open presents. The anxiety and lack of sleep for our guys would be insurmountable. Thankfully, I have the luxury of adjusting our visual calendar any way I like (devious Mom that I am). 

This year I kindly asked Santa to grant me a favor....I asked him to come while we were at dinner on Friday, December 17th, and amazingly he did!!

Now, understand, thinking up new gift ideas for Jake (32), and Joe (30) is NOT easy. But, in other ways it's a breeze. After years of sleuthing and mystery solving, we figured out that what they really want in the mix are some consistent items like new sweat pants and DVDs. So, we buy those and then try to come up with one or two surprise items. This is where it gets complicated, but sometimes we hit the mark.

Five years ago we bought Joe a replica of an old pay phone for his room. If you want to see a vision of joy, come over any morning and take part in a call to 1 of 4 of his favorite restaurants! I printed out a "speed dial" menu, for example, 1 for Chili's, 2 for Red Robin, etc. He picks up the receiver, dials 2, then yells my name to come and participate by giving the verbal food order. I usually do one round and then remind him that we are "all done", then redirect (again, mean Mommy).

Many years ago, we secretly pocketed a Chili's menu and brought it home. After daily perusing by Joe, I finally had to laminate it to save it. We still have it many years later, and it's still a part of our daily routine. Joe grabs it from it's special spot on my desk at least 10 times a day, waving it in my face with a pleading look. So, I had a brilliant idea... surprise him with a menu from his beloved Red Robin! 

I could go to the restaurant and ask nicely....but I had an Angel. Jake and Joe's friend, Katherine has worked at our local Red Robin for years, so I asked if she (with the help of her Momma, Pam) could get us one? A Christmas wish was granted. 

Joe tore through his familiar fare then pulled out the menu from the gift bag. I wish I had been better prepared to capture the moment, but..... you know the story. So, here we are, 2 hours later, still holding tight on that menu...that free menu.....that ultimate gift menu. All granted by way of an Angel. 

Each year, as parents, we learn the incredible value of the things money can't buy, and we are constantly reminded that Angels are all around us.

Joe all goo-goo-eyed with his menu

Attempt #1 of the ultimate family photo

Attempt #2 of the ultimate family photo

Finally 🤣

Merry Christmas to all!!

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

Friends Are So Important

Dear Friend,

Thank you for checking on us as the world faces unfathomable challenges. We are actually doing quite well, thank you.  Never in my life have I felt less alone than I do right now! This pandemic has certainly leveled the playing field by which we all play! Every human being on the planet earth is facing many of the same obstacles, which makes it difficult to complain, therefore, I won’t.

Also, never in my life have I felt more prepared to get a 90% score on a test in my life! It’s kind of like I know what to do for 90% of the time, and the other 10% will be learning and growing.

You know Jake and Joe, so you know that hubby and I have worked our butts off for the majority of our life to make theirs one of quality and happiness.  These past 10 days have been no different.  As is true for almost everyone in the U.S., we are now approaching day 10 of no stimulation outside of our own homes.  We’ve made it work, but it certainly hasn’t been without our share of tests.

You may remember, we started over 12 years ago building a work/life routine for the boys. We made sure to include areas of the community so that they could have a full range of choices. Well, without their work, movies, the mall, the library and the rec center, this makes a small-but-full world even emptier.  So, we’ve resorted to using the small range of choices we have and offering those more often.  They’ve always loved eating out, but now we’ve made the highlight of a few nights a week to be getting a “bag” from a restaurant and bringing it home. This seems to be working as a highlight, so we will continue to do that.

I made our usual monthly calendar, but I’ve already had to change it three times in the month of March—highly unusual. It’s so tough to plan ahead right now, even for me, so providing guidance to them is nearly impossible. One of Jake’s favorite activities is the one day a month where he gets his haircut.  He adores his Stylist, Miss Lisa and looks so forward to seeing her, getting his “cut” and “poo” and paying her for the service.  Well, that one went by the wayside, twice, so I removed it from the calendar. This situation fell within that crazy 10% of learn-as-we-go. He managed to work himself up into tears after asking us 1,000 times for “cut”. We no longer knew when it would happen definitively, so I resorted to cutting it myself, which seemed to settle him down. Needless to say, I am NOT a hairstylist, but I didn’t screw it up too much.

It’s very comforting to know that all the work we put into helping the guys trust and understand their routines has paid off. They trust us implicitly. We still see it as a blessing even though right now it’s tough to project anything.

We’ve reestablished some of our old routines that I used to use during summer break from school. Back then, when I didn’t know how to fill their time, I got really creative with outdoor activities, but it’s winter here in Colorado, which poses its own challenges. Luckily, we’ve had highs in the upper 60’s 3-4 days a week, which allows us to grill outside and enjoy some time outdoors. I resorted to putting the beach chairs on the patio just so we can sit outside several hours a day and get some fresh air in between the snow showers. I added it to the visual schedule hoping that the boys are more accepting of these transitions from the “normal”. They’ve done a fantastic job. I’ve tried to add one additional new item to the visual schedule each day over the past week to expand their horizons gradually. Chores are still a part of everyday life with no exception. I know eventually we are going to run out of new choices, but for now we are moving forward.

The boys usually earn $1 a day in their normal routine, so we've continued to do that. We thought about raising it to $2 a day, but Lord knows we don't want to start something we can't continue long-term...hahahahahaha.  I'm so thankful that I have always kept a "stash" of prizes that we can draw from when needed.  You never know when you might need a new Mister Rogers DVD or a Doodlebops DVD to appease the shopping urge.

I feel like we’ve really been preparing for a situation like this for many years. I have another friend, you know her, that always asks me if I ever live in the now or am I always projecting forward? You know the answer….always projecting forward. I am thankful for that now! I had ordered Joe’s beloved peanut butter cracks in bulk several months ago, thank goodness, now we won’t run out. He's such a picky bugger. I’m also glad that we have the RV if we need to “get away” LOL. Chris thinks it’s his personal “man-cave”! Thank goodness for Rocket!

As always, Chris and I are practicing coping and calming ourselves so that we can try to project that on the boys. It doesn’t always work, but it seems to be manageable right now. Even though we both have lost a bit of sleep over worry, we are trying hard not to project that worry on the boys. We decided to minimize the tv news, allow each other a break each day, and take turns doing massage on each other as a method of relaxation and deep pressure. You know that giving the guys deep pressure has always been such a calming method for them, so now it’s just part of that routine. We also put together two different music playlists that we can listen to—one for dancing (good gross motor) before dinner each night, then one for quiet time. We all love this small but powerfully effective element in our day.

All in all, we are not putting too many new demands on the guys in order to keep the peace. I’m so happy that we are beyond the school years so that we don’t have to try and be Teachers too.  We are not that talented. We’ll just try to continue to meet the physical and emotional needs of all 4 of us while using those resources in our immediate proximity. It’s all going to be ok. As with everyone, the most frustrating part is not knowing when it will end. 

I am so happy to write to and chat with friends. The guys miss their friends so much—we all do. Please keep us posted on how you're doing and let us know if you need anything. We wish you all the best with you and your family. We cannot wait until a day when we can hug you all.  By the way, we are totally NOT practicing social distancing at home. It cannot be done in Joe's world. 😜😜😜

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

My Life-A Race to the Finish Line

Our family enjoying the beach in FL, October 2018

When Jake and Joe were first diagnosed at the ages of 2 and months-old, I rarely thought about what my or my husband’s death would mean to their lives. I was too engrossed in the day-to-day. My thoughts were consumed with which therapy appointment I had to tote them to, or trying to interpret their every need when they couldn’t tell me.

As the boys passed toddler-hood and moved into preadolescence, my time was still depleted by their every need while contemplating which IEP goal I needed to focus on, how to stop shirt chewing, or the ever-elusive hand biting or groin scratching. I couldn’t face even the thought of looking too far into the future. There was too much uncertainty.

I wasn’t able to even conceive what Jake would be doing when he was 16 years old, or how Joe would learn to cope with all that consumed his little body when he was 10. The future was too scary to foresee, especially on those bad days when everything Fragile X Syndrome looked me straight in the face. Yes, there were even days when I hated that I had to think about all this when my friends were doing something totally different. Jealousy abounded.

My thoughts were only a dark place where images of the worst scenario lived. I couldn’t see the hope that existed within their ability or the people that endlessly supported us. Then, as with all things, my thoughts evolved. The boys grew and learned and flourished far beyond what I could have conceived in my own thoughts. 

Fifteen years ago, I did something that dramatically shifted my thoughts.  I attended a workshop put on by the ARC of Colorado that included planning for their future, a session on Wills & Trusts, Legal Guardianship, an explanation of the different waivers available through our county agency, one on Social Security and a brief touch on employment.  I was apprehensive at first to learn about all of this intimidating stuff, but, it changed our life!

As I sat waiting for the first speaker to begin, I gazed around the room at the other attendees. There were Mothers, Fathers, Grandparents and Guardians. The speaker began to introduce the days’ agenda and asked us each to give a short introduction. After each person had given their short spiel, it was clear to me that I had the youngest kiddos in the room….a testament to the fact that I have no interest in waiting until the last minute for anything in my life. I don’t like the stress that comes with waiting until the moment is upon me, nor do I like not having all of the information available to make a decision and plenty of time to analyze it. It was evident that this workshop would provide me with tons of information to jump-start my thinking in a new direction.

I raced home with all of my notes, eager to share all I had learned with my husband, Chris. For months after the workshop, I was still energized enough to tackle some of the issues they had talked about.

Over the next several years, Chris and I took the leap and created a will and special needs trust with the help of a lawyer that guided us to make decisions. One statement during our consult with him still resonates with me today.

He said, “Make decisions on guardians and trustees based on today, not what you think the future will hold. You can always revise the documents later.” This gave me peace and the ability to sleep at night. It felt liberating to be able to check that one HUGE task off of our to-do list without going into speculation about who would be around in the future.

I had a pile of information on Legal Guardianship that we put to good use when Jake turned 18, and later, Joe turned 18. We breathed a sigh of relief as we crossed off that daunting task. I subsequently took another course on how to file the Annual Guardianship Report by myself in order to save a few pennies (about $1500 a year to be exact).

When the guys were eligible, we filed for and received SSI and Medicaid. This is a privilege that I still struggle with. I was raised by folks who never took a handout so it stings a bit to accept help. Knowing that it will assure services for the boys long after we are able to (or if we are unable to) is the one thing that gives me reassurance that we did the right thing. I feel like it never hurts to question convention. Just because others do something does not mean we have to do it…but, in this case we feel it has helped our sons more than it has hurt our mental struggle. We strive each day to fulfill our part of the responsibility for our sons, too.

During our sons’ journeys through middle school and high school, we heard many options for employment, or ideas on how to obtain employment. This was the hardest thing by far to envision. We were told, “Think about your sons interests and focus on those.” I wondered how we could capitalize on an extremely high interest in Sesame Street or Mister Rogers Neighborhood as a job opportunity. Well, suffice it to say that we worked methodically and exhaustively on securing motivating and interesting jobs for both of our sons. I detail all of these challenges in my book, “Becoming Mrs. Rogers” (Click Here to order) if you wish to read more about that.

The compilation of everything I learned during that workshop caused us to write down a conceptual 2-year transition plan on how we hoped to retire without our sons and leave them in the care of others in our own home. Mind you, it’s been only on paper without super-fine details attached up to this point. There were some holes in the plan that we just could not fill 10 years ago when we wrote it. But, it would include the fact that we’ve left our home in trust for our sons so that they can viably stay in their own home with constant supervision. As with all things in their life, it requires a VERY gradual, methodical change in order to be successful.

This entire transition plan, we knew, would cost money.  We had no exact idea how we would fund the caregivers or the upkeep of the house. So, some years ago, we established some ways of saving money in the trust. I also continue to tap away at a 3-ring binder that will record facts about the upkeep and maintenance of the house. This gives us an idea on how much it will cost…. but nothing is perfect when you are projecting into the future. It’s a start, and perhaps a middle.

This month, a big thing happened. Jake qualified for a different waiver that will help fund his caregiver for the rest of his life, despite us believing that he would never clear the wait list we faced when he signed up at the age of 15. This came long before we ever thought it would. It was the best and the scariest news yet. We are thrilled that the question, “How will we fund the caregiver?” has been answered, but it puts things in motion that we were not ready to think about in our mid-50’s.  We will be ready. We are prepared to move forward, not backward.

It’s been fifteen years since that workshop, and we’ve arrived at a really good place in our lives. Our worst nightmare never came to fruition despite the worry. I only wish I could have that time back to spend in a more productive way.

Chris and I have spent a great deal of time over the last year talking and implementing many things that we need to tick off of our list in order to know that our due diligence is done. It’s been difficult to say the least. Morbid for some to even to read about, I know.

We are working with our lawyer to complete the third revision of our Trust as I write this. It’s all evolved in a very natural way and has come to a better ending than we ever imagined. We feel at peace with the decisions we’ve made so far.

Over the past year, we’ve taken time to talk about and resolve issues surrounding our own quality of life and the life after that.

-We were able to purchase long term care insurance so that when no one is able to care for US, there will be a plan. It was a nagging, unresolved issue that has since been dealt with. One less worry.

-We are in the process of pre-paying for our own funerals so that no one will have to think about or decide what to do. Check it off!

Another thing we have come to realize is that our sons enjoy many of the things we do, including spending some time at the beach during the cold, long winter months. So, we are exploring the idea of getting a small place in a warm climate where we can begin to practice another transition that will, hopefully, carry on after we are gone. It’s a work in progress. The ability to envision a positive future has allowed these thoughts to flow through and be a bright spot as we get older.

Our sons have some of the best quality of life of any people we know. They love their home, their jobs, their friends and all of the opportunities that come their way. Behaviors are still with us, but in a minimal way. No one in our family is perfect, so we do our best. Yes, we still have some learning to do before Chris and I exit this earth, but we have faith that it will all happen in due time.

So, for now and the rest of time, we are vowing not to spend every waking moment thinking about Fragile X Syndrome or what will happen when we are gone, but making memories to last a lifetime.

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