THE SOUND OF SILENCE

Sometimes, after my husband and I slip into bed at our usual 9:30 bedtime, I purposefully avoid going right to sleep so that I can revel in the silence. The daylight hours in our home are a constant flow of noise and movement, often making it difficult for my mind to be creative or focused. In contrast, nighttime is so peaceful, quiet and somber. I relax into the utter stillness of the house, listening to the breathing of all three men as it fills the airwaves around me. Once their breathing is heavy and unrestrained, I know I am alone in my thoughts. They are all asleep. Any evidence of the day’s stress slowly begins to melt away, but as my thoughts develop, another evil begins to creep in…..worry and fear.

As a Mom, it’s my predisposition to worry.  Every Mom worries. I suspect that some of my worries and fears are similar to other Moms; like worrying when my kids are sick, or worrying about a kid bullying them, or worrying if I am spending enough time on priorities.  There are many common worries among Moms. But, as the Mom of two sons born with a genetic cognitive disability, I know my worries and fears are somehow different. 

When our sons were very young, I had plenty of time to worry and obsess over a solution to many challenges we were facing at the time due to the fact that our youngest didn’t sleep through the night until he was 7 years old.  I distinctly remember lying awake at all hours of the night worrying that our sons would never do simple little things like drink from a straw, or say their first words. Anything to do with the mouth was a huge worry, as is the case with many kids affected by Fragile X Syndrome.

Another worry was whether or not our sons be able to participate in fun things or would their days be dictated solely by appointments to therapists, doctors or structured learning?

I came across a reminder of that challenge with Joe. It was a newspaper article written about the special-needs basketball team that he and our older son did and still do play on. When this article was written some 13 years ago, Joe had only recently even been able to participate in certain aspects of the game. It took us two long years to get him to even want to be a part of basketball and to help him want to play. These poignant photos reflect his inner conflict that was so evident to us at the time….him painstakingly going through the emotions of something that was bitterly difficult for him, but at one moment he was able to turn and gaze lovingly up into the stands to emulate a kiss to his Dad—such symbolism that still rings true today in some of the life challenges he faces on a daily basis.

Then you had other worries and fears;

Would our sons ever be able to learn, grow and be successful members of their community?

Would our sons ever have joy?

Would behaviors be the only thing that people saw when they looked at or met our sons? Would those behaviors keep them from living a full life? Would behaviors always be a part of their life?

Without verbal language, would our sons be able to have friends or relationships, or even communicate their needs?

And finally, the worry that plagues every single parent of a child with a disability….who will love them when I am gone? Who will care for them when I can no longer do it? That’s a doozy. That’s the thing that keeps many, many people awake night after night after night with seemingly no answer.

When my sons, now 27 and 29 years old, were young, I didn’t choose to enjoy the peaceful quiet of the night, I was forced to lay awake waiting for the next need to arise.  This seemed to reaffirm my theory that nighttime was the best time to solve all of the world’s problems. That is…until I learned to admonish those worries and fears and shift my thoughts to problem-solving mode.

At my core, I consider myself to be a very analytical person with a robust desire to think things through rationally then come up with a plan to resolve whatever is plaguing my thoughts.  That doesn’t mean that my strong Motherly instincts didn’t keep me from years of allowing those wicked worries and fears to stifle my sleep until I could rationalize my thoughts.  This core desire is what lead me to find people that could help me. There is no way that I could continue the path of sleep deprivation and still be able to be an effective Mother.  No. Way.

I’ll go out on a limb and say that husbands and Fathers don’t worry the exact same way as Mothers. At least my husband doesn’t.  He is a “fixer”; a “doer”. He lies awake some nights thinking about how he can fix a situation. He wants it resolved lickety-split and he’s just the man to do it! Sometimes, he thinks that if he raises his voice loud enough that, like magic, the desired result will appear. With our sons, the fact that it doesn’t materialize that way, can be quite frustrating for him.

I know in my heart that worry is not productive unless you act to resolve those worries—but, putting this philosophy in motion is much harder.

Many years ago, my husband and I met some amazing experts who took us under their wing and taught us things that saved more than my (our) sleep.  They taught us how to problem-solve with a whole “tool box” full of methods and approaches that me and my husband could apply to our sons. Do you know how empowering that kind of knowledge can be? It’s life-changing.

They taught us specific things like calming and coping, a method called “ready-not-ready”, video modeling, side dialogue and many others that we could utilize whenever we needed to. Along with basic therapies that incorporated speech and occupational therapy, they used a combined approach to motivate our sons. As positive changes occurred, we found ourselves more motivated than ever to want to learn more and to implement these methods in our everyday lives!

We had waited years to see smiles on our sons’ faces. They were able to be calm and focus on simple things that we had been unsuccessful at engaging them in. It was magical.

The amazing ladies we are talking about are Tracy Stackhouse and Sarah (“Mouse”) Scharfenaker and team at a one-of-a-kind Denver-based non-profit called Developmental FX (DFX). Every single day this team wakes up and gets to work changing the lives of families all across the world!  They have a very unique combined approach that treats not only children (and adults), but the families as well.  They help parents just like us to know what to do; to feel empowered and filled with the knowledge that we need to help ourselves and our children. Do you have any idea what that kind of knowledge is worth??????  We. Do!  As a Mother of two significantly affected sons with a challenging cognitive disability…I DO!

This kind of knowledge is the difference between worry and action.  I remember an evening many years ago after the boys had gone to bed, we started to reminisce about the big growth curse the boys were on.

I looked at my husband and said, “What do you think about the idea that every single thing we have grieved about, every single thing we have been fearful of, and every single worry we have had; it’s all been about us?”

He looks at me like I have two heads and says, “What do you mean?”

“I mean that, these boys were born with Fragile X Syndrome. They do not know any difference. They do not know the fears we know. They do not know worry the way we do. They only know what we project and what we show them.” By now tears were streaming down my face.

I continued, “Look at what they are capable of if we project confidence. Look at what is possible if we commit ourselves to teaching them and helping them. Everything to this point has been about our own grief, not about what they are capable of.”

This revelation has been the pinnacol in our lifetime of learning and continues to drive us to want to know more.  It keeps us searching for answers and resolution to worries and fears that we face.  Some fears are ongoing and continue to show up at the top of the “to-do” list—the resolution too scary for us to face, i.e., “who will love them when we are gone?”. But, it must be done. An answer must be found, eventually.  

So, we continue to reach out to those amazing, dedicated, Fragile X whispers called Developmental FX to help us sleep peacefully at night and not allow those evil fears to dominate our thoughts. That’s why I, personally, have dedicated the past 15 years of my life to helping them spread the word about the incredible work that they do. It’s worth that much to me. I want every family I know to have the same benefits that I have had.

*So, today I want to ask you to consider how much this kind of peace is worth?

*Is it worth $10 or $20 or $100 to have THIS organization continue to give peace to families?

*Consider a world without them…..

To have access to people who know what you are going through; to have a solution; to allow you to help your own child; to help you see joy on your child’s face; to give you as a parent the confidence to deal with just about everything that comes your way, or to be able to call when you can’t….this is what DFX does. That’s what they have done for us. 

Today, we feel like we have the basis of knowledge to be able to cope with whatever fear comes our way, whatever challenge comes our way, whatever life throws at us

…..it’s a good thing because 5:30 a.m. comes early and quick.

DONATE TO DFX

To learn more about Cindi Rogers, her book or follow her family, please visit mrsrogersworld

You Can't Do It Alone

I just returned from a quick trip to Cincinnati where I was privileged to attend the banquet at the bi-annual International Fragile X Conference. It was a treat getting to see so many of my old friends, and even meet some new friends. I am often taken aback when I meet someone new and they start by saying, “You are such an inspiration!” A feeling of embarrassment washes over me.

Webster’s Definition of inspiration

1.
a : a divine influence or action on a person believed to qualify him or her to receive and communicate sacred revelation

b : the action or power of moving the intellect or emotions

c : the act of influencing or suggesting opinions

2.
a : the act of drawing in; specifically : the drawing of air into the lungs

I don’t mean to seem ungrateful, but I often just want to crawl in a hole when I hear that! Not at all because I’m not glad to have been, perhaps, a role model, but because I don’t feel the compliment is warranted. After all, I am just a Mom like most of the people who tell me this! I make mistakes on a daily basis. I make bad decisions that I regret. I screw stuff up that I can’t take back. I’m just doing the best that I can. AND, I also had a lot of help getting to where I am today. Everything we are today is because someone taught us what to do.

Many of the people that helped me survive a diagnosis of Fragile X Syndrome, the most common form of genetic autism, for both of my precious sons, are the ones who are an inspiration.  They are the ones that need to be thanked for giving me the communication that allowed me to have 'sacred revelations'!

One of the most poignant revelations that my husband and I reflect on almost daily is one that I wrote about in great detail in my book, Becoming Mrs. Rogers (turn to page 129 in your books). If you haven’t read it, check it out on Amazon (Becoming Mrs. Rogers).

The fact is that every single hurdle we’ve faced has been approached with fear, but overcome with determination and tools.  Those tools are the product of someone who passed them on to us. We were and are just the delivery system--the messenger!

From the moment we were diagnosed with Fragile X Syndrome in 1991, there was an amazing Dr. right beside us, Dr. Randi Hagerman, helping us cope with medications or advice on where to look next. As time went by, we were blessed with a new Doc, Dr. Nicole Tartaglia at Children’s Hospital here in Denver where we live, again, supporting our every need.

From the time our boys started school, we had some amazing bus drivers, paraprofessionals, teachers, therapists and administrators dedicated to helping our sons move forward in their learning and their lives. Sure there were those with less than perfect methods, but the ones that stood stead-fast by our side made up for the short comings of others. Nothing in the world is perfect.

As we progressed through the years with difficult questions about coping and calming and toileting, Dr. Karen Riley was there, along with Dr. Marcia Braden, offering their expertise based on years of experience with others facing the same challenges we had.

From the moment we were told that our sons needed intense OT and Speech therapy, amazing therapists like Tracy Stackhouse and Sarah Scharfenaker (aka “Mouse”) of Developmental FX (http://developmentalfx.org/) were there. They taught my husband and I methods and approaches that we will use still today after many years…and we continue to learn. I believed in their philosophy so much that I’ve served on the Developmental FX Board of Directors for 15 years!

Knowing that there were people in our world to help us, made us feel less alone and capable of helping our sons get through the toughest day. It has taken a lot of people with a lot of expertise to help us make it to where we are today.  The journey is not over, so we will continue to need help! But, those helpers will not be there forever. We are now realizing this. It’s a tough reality to face.

I admit it…I have taken some of these helpers for granted. This fact became quite clear to me when Mouse recently announced her retirement from day-to-day treatment for families. She’s planning to retire in December, 2018, and this will be a sad day in the Rogers Neighborhood. Mouse is still planning to give of her time to a world that she has so generously dedicated her life to, but it will be an abbreviated schedule, reserved solely for special projects. One of these special projects will be working alongside Tracy on some long overdue projects, including a book on the day-to-day strategies used in working with children and families affected by Fragile X Syndrome (FXS). I, personally, cannot wait to read this!

Damn them all for wanting a life of their own! Right? What will we do when every one of them decides to retire? I can’t bear the thought. There are brilliant newcomers being trained as we speak so don’t fret.

All of this has made me think about how much and what a huge influence they have had on our life! THEY are the inspiration. They are the ones that influence action, and communicate sacred revelations that influence our day-to-day life.

They are the ones who dedicate their lives to the betterment of ours.

They are the ones that move my intellect closer to being able to cope with any challenges that come my way.

They are the ones that push my emotions toward hope.

They are the ones that influence or suggest opinions that reflect the very best in the field of Fragile X.

They are the ones that allow ME to draw air into my lungs day after day after day despite some of the challenges that cause me to drop to my knees and beg for answers.

During this month of July, also named Fragile X Awareness Month, I plead with you to think about those people or organizations that have truly helped you through whatever journey you are facing.

If you can’t give money, give your time.

If you can’t give your time, create something to donate to their auction or their cause.

Show them that they mean something to you.

Show them how much they have given to your life.

Show them how much they have helped you to make it to today.

For that help may not always be there, don’t let it slip away.

You cannot do it alone.

To learn more about Cindi Rogers, her book or follow her family, please visit mrsrogersworld

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 27^th, 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 50^th 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"

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

The Courage to Fight

As I reflect on recent events, I am reminded that this Fragile X life will have its challenges. The negative effect of this genetic disability inherited by my 2 precious sons rears its ugly face less frequently now, but their need for assistance will never fade.

Recently, we have been even more aware of one challenging behavior in our youngest son, now 26. This awareness has led me to retreat to a dark corner where I am revisited by a past sense of doubt and fear that I have not felt since the guys were very young.

When Joe was about 10 years old, that place of doubt and fear came to its pinnacle, causing me to first retreat into some pretty extreme thoughts, only to emerge to a new place where I had the overwhelming urge to fight. At the time, I had no idea where that urge to fight came from, but looking back, it has become quite clear to me.

Prior to Joe turning 10, my husband and I learned bit-by-bit about methods and approaches to help Joe.  We wrung our hands and pondered whether or not we had the courage to face his challenges and to really act upon them using those methods.  Every single method took time and patience and resilience to learn and impose.  None of them had any written guarantee that they would work. Each one required us to be the guide and also be consistent.  Nothing would be easy on this path. They also required us to listen and watch and wait. Our inner voices were hard at work sending words of doubt into our daily routine in an attempt to sabotage our efforts.

If you’ve had the chance to read my book, “Becoming Mrs. Rogers”, (buy it here) then you know we prevailed and how we did it, but if you haven’t, then you might give it a read. Needless to say, we did prevail with the amazing help of some resources. The real courage came when we took the first step to ask for help, and the second came when we heeded that advice.

Over the years we have come to embrace many of the methods and approaches in an attempt to help our sons become productive, happy members of their community. They have many who care about them and that make a difference every day. Don’t get me wrong….nothing is perfect! But, I work hard to tamp down those negative thoughts of doubt….but sometimes it’s inevitable that they will rise to the surface.

When Joe started High School, he began to have some pretty challenging behaviors during his school day, making it nearly impossible for him to focus on any kind of tabletop activity or to participate in class.  Again, we leaned hard on our resources—the amazing team of Tracy Stackhouse and Sarah Scharfenaker (endearingly known as “Mouse” to everyone) of Developmental FX here in Denver, Colorado where we live.  We had been working with these intuitive ladies for some years, so they knew Joe, and they knew he could be a challenge at times.

My husband and I had a consult with them to go over what exactly was happening and determine, if we could, what was really going on with our “Joe Man”. We discussed the specifics of his daily schedule, his routine, and what areas were troublesome. What we discovered then was a poignant fact that remains with us today.

On a typical school day, Joe would ride the bus for about 45 minutes to get to school, then walk a little bit to his home room class. The first scheduled activity was one of the 3 “Rs”, reading, writing or arithmetic.  Inevitably, Joe would begin some kind of avoidance behavior like pulling his t-shirt up over his head, then laying his head on his desk.  Sometimes he would even cry if it was an especially difficult day. Sometimes, he would physically engage whoever was trying to verbally engage him, and this was not good.

After two hours or so of attempted tabletop activities, the students would go to gym class where Joe would be like a bird just let out of a cage. He would jump around, run away and generally not participate in any organized activity. Then, another classroom exercise followed by lunch at a table sitting down. Joe would eat his lunch, but he would not stay with his group or listen to the staff.

Just these facts alone brought up one very clear issue with Joe in the minds of Tracy and Mouse….Joe NEEDED more gross motor activities incorporated into his day. Gross motor activities are ones that use the largest muscles in our bodies, like running or walking.  This kind of plan can also be called a Sensory Diet.  I’m no expert, but I do know that a sensory diet is VERY important to my sons and it has been and will be  forever. The requirements of that sensory diet has changed a lot over the course of their lives, but it still needs to be an integral part of their day.

So, we worked with the school to come up with a new schedule for Joe, and subsequently for some of the other kids in his class.  With the change, Joe would get off the bus, put his things away in his classroom, then walk directly to gym class. After gym he would have one tabletop activity, then we created a new job task for him that involved walking—mopping the hallways. After that, another tabletop, then lunch. After lunch, we also created another job for Joe that he grew to adore—picking up trash around the campus outside. We had no idea that this task would be such a growth area for him, but the social implications were amazing. Joe was allowed to purchase his own little push cart to hold the trash, and then we taught him to use a little pincher-picker-upper thingy (do you like my technical jargon?). As he walked the campus, the other students got used to seeing Joe, and would answer his greeting of, “Hey!” We had several years of magic growth for Joe during these years after we figured out the answer to the symptoms. The schedule change was incredibly effective at changing the outcomes to make Joe successful for the remainder of his High School years.

Now, in his adult routine, Joe comes home with his amazing mentor, Daniel, after several hours of work, lunch and downtime, to our house. For the past couple of years, this has resulted in Joe entering the house with the power of thunder, throwing his backpack or earphones, shoving me (not hard), then proceeding to stomp until I swear the floor will cave in.  We’ve simply let this go on, not thinking completely about what Joe's needs are. As you can imagine, some days are worse, some days are better, but we handled each one. I had little thoughts about the fact that I needed to address this behavior, but that was it…just thoughts.

That fear of acting on my thoughts or implementing a solution allowed that voice of doubt to just keep things the same.  The voice told me that, “It will get better”, or “This too shall pass”, but it hasn’t. It didn’t.

I imagined myself in a dark room looking out into the lighted abyss not knowing what or who was out there, feeling like I was being interrogated, but not being able to see the face of the questioner. My own voice saying, “He’s ok. This behavior happens but we’re used to it and I know it will get better”.  All the while, Joe is telling us something….I NEED SOMETHING!

Last week while I was at a Board Meeting for Developmental FX, I had a few moments with Tracy and Mouse, so I mentioned the challenge and the fact that we needed to do something and wondered if they had any ideas. 

Like a switch, Mouse says to me, “Oh, Cindi, you know what to do!” 

I paused and she paused, then I said, “Well, I was thinking about a plan where I have Daniel drop Joe at the park and meet me, then we both go for a long walk before we go home.”

Mouse replies, “Or, what about incorporating some activity at the rec center as a part of his routine before he goes home?”

The conversation continued for a few moments, but these ideas resonated with me just like they had some 16 years before.  “RIGHT!”, I thought….Joe still needs his gross motor input so desperately that he’s exerting his energy when he comes home!  DING!

The following day, I sat with Daniel and Amanda (Jake’s mentor) and we discussed things they could do on days when they are all together as a foursome, and things just Daniel and Joe could do together. We are so lucky that we have such caring people surrounding both of our guys, and knowing that we can trust them to do whatever is needed.

Yesterday was day 3 of this new plan, and boy-howdy is it working! On day one, Joe was 25% better; day two, 50% better; day three, 75% better. 

Out of this enlightening exercise, two things have been real “Ah-ha” moments for me….

One: that voice of doubt has always been present and will always be there to try and trick me into succumbing to fear instead of action, but I will continue to strive to fight and persevere in the loving interest of my biggest priority—my sons.

Number two: I am one of the luckiest people I know having the resources I have and those who love us. Why don’t I take advantage of those more often? Because it takes courage to ask for help. When I doubt my own knowledge and ability, it helps to chat with someone close to me who can remind me that I know what to do.  I realize the questioner in my imaginary, dark room was there all along offering their extended hand in aid.

I just needed the courage to fight and to ask my people to help me fight it.

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

PLAYING HOPSCOTCH

I have five unfinished blogs on my desktop.  Five! Each one started as a complex thought with an ending in mind, but I could never complete the thought enough to finish.  Me. It’s like a profound mental block preventing me from making that circular story fit together. Until today.  Today, I arrived at the reason for my stumbling block, and it’s not a reason that I particularly want to discuss…but I must.

They say grief is a process. Who knew it would last this long?

When my oldest beautiful baby boy was two years old and just diagnosed with fragile X syndrome I grieved all of the things that I imagined he would not be able to do in school or with friends. I was certain those thoughts were the most devastating things a Mom could ever experience. They ripped my heart out, stomped on it and put it back in my chest to heal.

When our youngest was also diagnosed with fragile X syndrome as an infant just a few months later, I again grieved the same things for him.  I also imagined as far as I could what our life would look like with two sons with disabilities, although the imagination can only take one so far. The grief was no less staggering and debilitating.

The real reality stared me right in the face on a daily basis with delayed milestones, an absence of any verbalization and behaviors that reminded me of our designated fate. All I wished for was some kind of affirmation that everything would be ok.

As years passed, I realized that all of those conjured images were just thoughts, and that our sons could do things, and they could experience things, and we could have joy as parents. We celebrated small moments of joy and “inch stones”, as my friend Holly calls them. I exhaled a sigh of relief as we settled into some level of normalcy.  Of course, there were tough times, no doubt, but we saw progress! This progress created little flickers of light that kept me hanging on, hoping and striving for continued development.

We saw our sons graduate!  We never thought that would happen, but we made it happen.  It didn’t look exactly like their peers, but because it was so hard-fought, we were elated at the achievement…and it was great.

Grief reared its ugly head now and then through the years, but subsided shortly after, leaving me with my perpetual sunny outlook.

Year after year, my imagination could not transport me far enough into the future to see our sons as adults. Those were unimaginable thoughts that frankly scared the shit out of me.  I couldn’t possibly formulate clear, realistic thoughts about what their “job lives” would look like, but suffice it to say that I don’t think I ever could have imagined it looking as good as it does now.  

My husband and I always dreamed our sons would have a strong work ethic just the way we were raised, but that’s as far as my mind could take it. I couldn’t fill in the specifics on what each of them would be doing or how well they would do it.  It just wasn’t possible.

I am familiar with all of the phases of grief; denial, anger, bargaining, depression and finally, acceptance.  When the boys were little, I definitely followed the path exactly as written.  As time passed, I found myself having little bouts of sadness or depression in unexpected times, but again, I found my way out to land once again on acceptance.  It felt like a game of hop-scotch; skipping onto the block marked, “Acceptance”, only to be forced backward onto the dreaded depression box when my turn came around. 

It’s literally been years since I’ve played that ole’ game of hop-scotch, but as I pass yet another birthday, I find myself joining in the game once again. Something as minute as age can certainly do that to a person…or perhaps it’s more than that.  Other things have stirred those old feelings up…joyous things like weddings and babies.

Our sons have had some of the most amazing friends through their school years and subsequently into adulthood.  My husband and I, and the boys, have watched each one of them move on to college, jobs, and now, the normal path of engagements, weddings and now, babies.  We are elated at their joy and success and we celebrate with them….but at the same time, I look around and see our life not changing and I am once again hopping backward.

This morning, my calendar glared at me with the reminder that it was time to file the annual guardianship papers on one of the boys—a task that I loathe, but at the same time, I am thankful to have as an option. The forms beckoned me with questions like, “Who currently supervises the Ward (my son) on a daily basis?” or “Please describe in details the current mental condition of the ward.”  On any other given day I might just busily go about filling in the questions I am so familiar with giving no regard to the emotional ramifications….but, today it hit me hard. Another reminder of our path.

I needed a break from the paperwork so I dragged myself into the shower, trying to take a deep breath and swallow away the lump in my throat.  I rotated the faucet and put my face directly under the spray so that I could feel the hot rush of water run over my head.  It was peaceful and soothing.  I relished the solitude and quiet.  It gave me some time to gain perspective on the feelings I was having.  I needed that.  I find that perspective is often my best teacher.

 

I finished getting myself together and returned to my computer to finish the dreaded chore that continued to beckon my attention.  There is no delaying the chore since a delay would mean receiving a “nasty gram” from the court system stating that I was tardy in submitting the form, and I didn’t ever want to be late. It’s something I loathe more than the task itself.

I decided to take a peek at Facebook as a momentary diversion to see what my friends were doing. They had to be up to something better than I was, I told myself.  As I quickly glanced through the news feed, I came upon one of those memes that I typically scroll past, but this one caused me to pause….then to think and reflect.

This was just the perspective I needed at that moment.  Mind you, I am keenly aware that my life is full of blessings. I am constantly thankful that my sons have taught me lessons that I would surely never have learned had it not been for their disability. I have a Saint for a husband that puts up with my every whim or mood or ridiculous desire. I am capable of many things and have many friends that love me.  Every person has one challenge or another and mine is no more difficult.

I am reminded that no life is perfect, but that it’s our response to those challenges that makes us the person that we are.  So, I will continue to do my part to make my family’s life a series of experiences. I will strive to make memories to last for whatever life we have left together. This shall be my path.