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, Joe, 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, and we as parents must be the driver. 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 we sit calmly to read words from a comforting person, Mister Rogers. 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 was a situation from 2016. 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 Yo-Yo 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 compared to when they were just babies. Back then, 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

To learn more about Cindi Rogers and her book: Please click "Becoming Mrs. Rogers-Learning to Live the Fragile X Way"

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