Monday, May 21, 2018

You Are Special


From the moment he could sit up and watch television, our oldest son was fully enamored by Mr. Rogers Neighborhood. As a toddler, he had no idea what the words, “You are special just the way you are” meant, and we as parents, had no idea what an impact they would have on our way of life.

Each morning, Jake would creep over to our behemoth console television, pull himself up to a standing position, and stare intently as the John Costa piano introduction of Mister Rogers’ Neighborhood began. He’d stand statue-still while touching the glass, completely focused on the scene as it shifted from a birds-eye view of the model neighborhood to Mr. Rogers himself entering his television house. The real truth was that he was waiting for his favorite part…the moment when Fred would remove his suit jacket, grab the wooden hanger, hang up the jacket, then remove his sweater from another hanger…the hanger would dangle from the closet rod as Fred slowly closed the closet door to begin his lines. 

As he grew, Jake would start each and every day waiting for the school bus while watching Mister Rogers Neighborhood. Twenty five minutes later, he’d be faced with the toughest decision of his day—whether to stay home for the final goodbye from Fred, or run for his beloved bus. That situation was serious! He loved both with every cell of his body.

Day after day, year after year, Jake’s love for Mister Rogers Neighborhood was a steady comfortable part of his routine. For him, the world of make-believe and Mr. Rogers’ Neighborhood really existed as Fred came into his living room and spoke to him in his calm, monotone voice each day. When Jake was young, we didn’t realize what power there was in the thing he loved most.

Jake dearly trusted Fred, and since Jake was diagnosed with Fragile X Syndrome and Autism at the age of two, we learned how that trust could be helpful in our everyday life and in communicating with both he and his brother, who was also diagnosed with the same. Mr. Rogers had a gentle way of helping children understand things in a calm, soothing way, while often teaching something important.

When we were at our wits end in helping Jake’s behavior at school at the age of 10, we developed a reward system using Mister Rogers Neighborhood videos as a motivator.  Boy, did that work! For every day that Jake achieved his goals for the day, he earned a dollar. We pinpointed an end goal ahead of time and Jake could work toward that goal.  Without fail, he would choose to earn enough money to buy another episode of Mister Rogers Neighborhood.  At the age of 29, he still prefers that purchase over any other, although his interests have spilled over into the world of Star Trek the Next Generation, too, but that love is not nearly as deep as his love for Mister Rogers Neighborhood.

He owns every book published by Fred Rogers, as well as at least one copy of every video and DVD available. Without uncertainty, I believe Jake is Fred’s number one fan! His brother, Joe, is fast becoming the second.

Years ago, when we struggled with potty training Joe, we incorporated the reading of “Going to the Potty” (1986), and watching “When Parents Go To Work” (episode 1614 from 1989), where he sings “You Can Never Go Down the Drain”, as a part of our daily routine. I’m not sure if the book or video actually helped, but we like to think it was instrumental in giving some comfort to Joe ……..or at least subsequently, to his parents.

When our beloved dog, Elmo, died, we watched the episode, “Death of a Goldfish” (1970-Episode 35), and read comforting words from his book, “When a Pet Dies” (published 1988). The boys love to hear my imitation of Fred’s voice as I attempt to read to them in a steady, calm voice. It’s amazing how they get that it’s really Fred’s words, and not mine. The phrases emanate his understanding ways, and the words are categorically his.

We’ve embraced these same methods when we’ve experienced the loss of someone close to us. Simply reading passages from, “The World According to Mister Rogers” (2003) was helpful. Any tragedy that occurs in our world requires moments of comfort and understanding. It can often be difficult to interpret our sons’ feelings caused by the world around them since they possess little ability to express, and we find it very helpful to give them the opportunity to express those feelings through Fred. You see, it is not unusual for tears to begin flowing once we sense something going on, and then sitting calmly to read words from a comforting person. The very first time this happened we, as parents, learned the power of Mr. Rogers’ words. We also learned that that power would be a reigning force in the way we learned how to best interact with our sons.

Suffice it to say, that we’ve used every Fred resource over the years. One of the most notable recent situations from 2016 was a positive one, but also a challenging one, so we turned, once again to Mister Rogers Neighborhood for guidance. Jake and Joe had never flown on an airplane before, and we knew it would take a methodical, calm approach in order for it to be successful when traveling with 2 sons with special needs.  Needless to say, it was incredibly helpful to incorporate watching an episode of the program entitled “Divorce” (episode 1480, 1981) where Fred visits an airport and tours an airplane, and to read Going on an Airplane (1989). The whole experience was amazing for our family! If you want to read the whole story, visit my very detailed blog here It's A Lofty Goal!  Being able to fly as a family has really opened up many doors in our small but full world. 

As parents, it was to our advantage to embrace Fred because it became such an effective way of learning, teaching, motivating and connecting on an emotional level with our sons. While we were knee-deep in learning how to bend down and meet our boys where they were, we also learned how to embrace Mister Rogers Neighborhood as part of our daily life. Because we embraced him, it was such a shock for us to learn of his death on February 27th, 2003. When we heard the news, we cried big tears for the loss of a man that brought so much to the world, and so much to our sons. We had to find ways to keep him alive for them.  Of course, they had no idea that he was gone. There really wasn’t any way for us to portray the loss of someone that continued to come to them in the very same way he had since the beginning of time….so we didn’t even try.

We made our very first trip to Pittsburgh, PA, in 2007, where we visited the Pittsburgh Children’s Museum! At the time, they had the complete television set from Mister Rogers Neighborhood as well as a wonderful collection of memorabilia from the show. We traveled all the way from our home in Colorado to PA in our beloved RV, lovingly named “Rocket” (an homage to the program “Little Einsteins” which is another learning-based program). Having Rocket has made a whole wealth of possibilities available to our family, while still providing all of the comforts of home that our sons need. We took the time to also visit LaTrobe, PA, which is the home of Idlewild Amusement Park (where Trolley used to live but now Daniel Tiger’s Neighborhood lives), as well as the birth place of Fred himself.  The looks on our sons’ faces as they took in every sight and sound—each one unfolding right in front of them--was the stuff that dreams are made of.

Since that trip in 2007, we have made 3 others, and are currently preparing for another. Now, the television set resides in the Heinz Museum in Pittsburgh, and is all ready to celebrate the 50th Anniversary of Mister Rogers Neighborhood’s television debut. We decided that we couldn’t miss it. We’ll journey in Rocket, as always, to Pittsburgh, then on to a little town just south to visit the Trolley Museum where Fred once visited (Episode 1531, 1984, entitled “Grandparents”). We’ll visit a few friends along the way (we have friends in just about every State since we share a journey that no one wants to be a part of but is so glad they joined—that of Fragile X), then visit the amazing train museum in Strasburg, PA, because Fred and our sons love trains!  We can’t forget a visit to the Idlewild Amusement Park and Soak Zone in LaTrobe, if nothing else, but for some shopping for Mister Rogers memorabilia!  How else can we celebrate this milestone year?

One of Jake’s very favorite episodes of Mister Rogers Neighborhood has always been, “Music” (episode 1547, 1985) where Fred visits the infamous Y-Y o Ma, world-renowned cello player, at Negri’s Music Shop.  So, Jake and I will brave a sold-out crowd to see Yo-Yo at Red Rocks Amphitheater here in Colorado in August.  The tickets cost an entire paycheck, but….oh well…you only live once. I cannot wait to see the look on his face when he sees Yo-Yo. 

Then, we hope to get tickets to see Itzhak Pearlman next February when he performs with the Colorado Symphony Orchestra so that both of our sons can experience another of their favorite visitors to The Neighborhood (episode 1670, 1993). Fingers crossed.

All of these are memories that will last a lifetime, no matter the cost. It is priceless for us to see our now, 29 and 27 year-old sons enjoy things in their life—even if they are things that others might consider childish. As I watched yet another episode of Mister Rogers Neighborhood on the PBS channel (thank you Amazon) the other evening, I noticed so many things that are now obsolete and it made me sad. When Fred answered the landline phone and spoke to someone, or when Mr. McFeely came and again used the phone to call, or when the actors imagined play scenes in the “Neighborhood of Make Believe”, or when they talked about building a school where kids can feel safe and the puppets believed it. These things need to be revisited….we need to embrace those things again.

My husband and I never imagined that our sons would come as far as they have when they were just babies. We imagined the worst. Then, this kind, calm man came into our living room and told our sons that they were special just the way they are, or that they make each day a special day by just your being you. It ended up being so true. We all just had to get to the place where we could believe it.  I think we took a Trolley through the Neighborhood of Make-Believe, through many different places where we learned many lessons and were asked many questions, and finally we arrived at Mr. and Mrs. Rogers Neighborhood where we could live happily ever after.

"Part of the problem with the word disabilities is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can't feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who aren't able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities."—Fred Rogers

Note to my readers: Many of you know that my husband and I established a scholarship fund to help families like ours pay for hotel expenses at the bi-annual International Fragile X Conference. As a means of raising money for that cause, we sold t-shirts (see them here mrsrogersworld/t-shirts), but we've awarded the scholarships for the 2018 conference and we still have many shirts leftover.  We'd like to give those away at no cost to our loyal readers, so here's what you need to do to get one (and we know that everyone will want to wear them to the upcoming conference in Cincinnati in July)....
Share this blog on facebook (be sure to make it public so that we can see that you shared) and/or use the hashtag #mrsrogers2014 (make it public so we can see it) AND in the comments tell me what size you want. We have limited sizes (LOTS of kids sizes from XS to XL) and we'll send you the closest size. If you don't want a shirt, we are still grateful if you share our story :) We thank you all from the bottom of our hearts---Mrs. Rogers

To learn more about Cindi Rogers and her book: Please visit https://mrsrogersworld.com/

Monday, May 7, 2018

LEARNING TO CLIMB



Every life has its challenges.  Those that my husband and I have overcome together have been some of the toughest, starting with the day we received our genetic diagnosis for our two precious sons some 27 years ago. 

I believe it’s no coincidence that we live in Colorado, allowing us the splendor of living among some of the highest peaks in the world. Our life has forced us to become involuntary hypothetical mountain climbers when it comes to facing and overcoming those challenges, so being in Colorado makes it ever-so-convenient.  In climbing terms, we could be considered what are called Alpinists, those who practice many different types of climbing, due to the fact that we’ve scaled mountains, boulders and sheer cliffs, all requiring a different skill-set. I know very little about  real mountain climbing, sport climbing, bouldering or even free solo climbing—in reality I’ve never (and never will) do any of these. I am way too cautious to attempt such a feat….besides, my vertigo wouldn’t like it. My husband, Chris, might like to try, but I suspect he has many other things he’d like to try before that.

I clearly remember the day 27 years ago, when that diagnosis was laid in our laps. It was like Chris and I were standing at the base of a sheer cliff, looking up and wondering how we would ever begin; if we would have the strength to make it even halfway; or if we would cascade to our deaths?  How could we take step one when our grief was so immense? Even if we took the first step together, how could we manage to stay in tandem? Would we have what it took to climb as a team? Could we finish together and still love each other at the summit?

Just as John Gray suggested in the ethereal Venus and Mars scenario from his book, Chris and I did not follow the same path when it came to the actual grieving process. We were each very different in our phases of grief and our behavior as a result.  There are parts of the actual stages that I don’t remember well, or choose not to remember well (leave it to selective memory retention).  We are quick to remind each other about some of the more memorable days, grimacing at the memories, while simultaneously bidding them a fond adieu.

In my own journey of grief, whenever I felt angry, I would find myself crying over the smallest thing, like when Joe bit me for the first time—he was only one. I questioned whether this boy that was born from my womb actually loved his Mother. It seemed so vindictive at the time. I blamed the gene. Crying was my way of showing anger.

It was easy to get through denial since I was engrossed in my corporate job working 60 hours a week, while a caregiver took on the role of moment-by-moment--a role I would later take on full time as a corporate-Mom-goes-stay-at-home.

I waffled between anger and denial for a few years, throwing in some bargaining tactics.  I was convinced that if I spent enough money, if I toted the boys to enough therapy appointments or “Mom and me” classes, that they would somehow be cured. We wrote checks with the promise of a cure and banked on those organizations’ success to help us tackle that unattainable sheer cliff. Suffice it to say that the bargaining tactics didn’t erase one single genetic footprint or cure our sons.

Day after day, week after week, month after month, somehow Chris and I kept going. Some days it was like scaling a small foothill with occasional boulders and a gradual slope—other days it was excruciating mini steps up a wall that pointed in a backward direction. During those more difficult days, I was alone. I was forced to use my fingertips to try and place the next foothold or hook in order to lift myself up. Chris could not be with me.  I was far ahead of the place where he was and there was no way for me to help him catch up. He was physically on a more gradual track.  I had to move ahead at a faster pace since I was with the boys in what I like to call the full-emersion program.  Chris was on the part-time track, working full-time outside the home. 

His progress through anger and denial were so much slower than mine. Little things seemed to set him off, like when a tool wouldn’t cooperate just so, he’d yell and curse. He’d blow off my frustration by saying things like, “Oh, he’ll (one of the boys) get over it”. I knew they wouldn’t, and I knew this was his own denial showing through. I also noticed his lack of acceptance (denial) in the way he would respond to others about the way our son did this or that in public. His anger was outward and palpable, unlike my own. He never cried like I did.

There were evenings when he would return home from a long day, only to hear me complain non-stop as I broke into tears of exhaustion. He was often at a loss for words, and emotionally unsure about how to feel. I believe he was at a loss on how to support me, too, which made it even more difficult as a couple. He couldn’t be in the same phase as me when it came to emotions.  In his defense, and in hindsight, he did an amazing job based on the tools he had to offer. Somehow I made it through to acceptance and I thank God every day that I made it.

For Chris, on the other hand, like many men I know, he was not as transparent in his feelings. Small things would incite a larger-than-deserved angry spell. His temper was much shorter, and frustration was sitting just on the surface of any activity. Sometimes, the words flowed out of his mouth in angry phrases, causing me to question his love for our precious sons. Then,there were times where his utter silence caused me to wonder how I would cope. I was in no condition to help him cope when I was struggling myself. It was a very difficult time with no real end in sight. We just kept climbing and climbing, pausing at times for emotional gridlock, then going on almost at a turtle’s pace.

As a couple, we teetered between an attempt to comfort each other in our shared grief, and resisting a pull that forced us to back away from any constant reminders of our inevitable reality.

Then, years into the grieving, one real day of helplessness came to pass.

Chris arrived home as usual. I had dinner ready, so we sat down to eat as a family.  The boys finished at their usual lightning speed and left the table. Chris and I reviewed the moments of the day, pausing in between bites. Silently, Chris placed his fork on his plate, took a drink of water, and dropped his head.

I asked, “What’s the matter?”

He raised his head and I saw tears in his eyes that I had not seen in years. My heart sank into my stomach. I stopped eating, too. Chris sat for a moment in silence, collected himself, then he began to speak. He was ready for me to help him. I was afraid I wouldn’t be there to hoist him up when he needed it most.

He talked about his real fears for us, for the boys and for our life. The words poured out slowly and steadily, telling me that he had been thinking about these things for quite some time. It had been roughly five years since our diagnosis.

The most excruciating thing for me was to not be able to take the pain away for him. This was the one man I dearly loved. I wanted desperately to hand him a pill or an antidote that would help him speed ahead to the place of acceptance where I was.  I needed him to be beside me….but, it wasn’t possible. That’s not the way grief works.

As he spoke, I realized exactly where Chris was on our journey up this mountain.  He was following the same exact path I had taken, but now I knew without looking down where he was—I recognized the signs from my own experience.  He wasn’t lost….just taking it at a slower pace than I was.  I was able to see signs of where he had been…..I also knew where he was headed.  Seeing these things allowed me to ask him some important questions that I had already resolved in my own mind.  I was able to offer some comfort knowing that he, too, would make it through.  We hugged and I held him in my arms. He was on the trajectory of acceptance.

There is no time since that I could point to that was more poignant in our marriage or that would define our future together. Prior to that time I often wondered if we would be able to get on the same path or wavelength—if we would even make it. I questioned whether we would be able to support each other in our climb and our journey. I know had real hope that we could.

Over the next several years (yes, years) we came together on many things, including decisions, day-to-day approaches, discipline and what our future looked like. It was so liberating…that mountain became a clearly marked path that contained two lanes wide enough for both of us. Yes, there were still boulders to dodge and some steep slopes, but the sheer cliffs had disappeared. 

We haven’t reached the summit yet, but acceptance is a part of our every day life now. There has been no tougher climb than the one we have traversed together, and I wouldn’t have made it without him, nor he without me. It’s been the best lesson ever…learning to climb, and the best partner to do it with. I think we are prepared now to take on whatever obstacles come our way; foothills, high peaks, sheer cliffs or gradual slopes….hand-in-hand.


To learn more about her 5-star rated book, "Becoming Mrs. Rogers" or about Cindi, please visit www.mrsrogersworld.com