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.
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!
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| 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
-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.
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
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