My Fragile X Life-A Chronological History-Part 2

Earlier I wrote about our first decade of living with fragile X syndrome.  To read Part 1 click here: http://mrsrogersfxneighborhood.blogspot.com/2013/01/my-fragile-x-life-chronological-history.html.

For us, the 1990’s were a decade of learning, evolving and, grieving. Even with as much as we had learned already in our journey, there was still much work to be done, especially on the home front. The 2000’s turned out to be a decade of changes, challenges, and implementation.

What follows is part two of a two part series; I hope families who are not so far along in their journey can perhaps learn something from our experiences, from how our lives have evolved from those early days of shock to our current days of (mostly) joy.

A New Decade

The new millennium brought many new adventures our way. There was still much work to be done, especially on our own home front.  We shifted our priorities from trying to raise awareness to just focusing on how to help our own boys.  We were now ready to face the reality that lay before us.  It took us some time to be able to “face the music”, but we knew it was the next step in the grieving process.

At some point, what we really discovered, again I don’t remember when, was that this long journey…..was all about US.  We were the ones experiencing change; we were the ones grieving; we were the ones facing the challenges.  The boys were just the boys.  They were born with this thing called Fragile X, and they knew no different.  They were simply waiting; waiting for us to get our “poop in a group” and love them, and teach them, and face them.  This was the revelation.

In the summer of 2000, the 7^th International Fragile X Conference was held in Los Angeles, CA. By this time, my whole family was very invested and involved in Fragile X so my Mother, Father, Sister, and I attended this one. It was at this conference that I met some other long-time friends in the Fragile X community, like Kareen Weidenfeller and Tracey Shaffer Weinstein. Both of these ladies’ smiles are always present and always evident at every conference. They both also have children about the same age as my boys, which helped form a bond among us that remains unbroken.

Up to this point, Jake and Joe had been cute, adorable, loving, cuddly little boys.  Chris and I were able to manage their day-to-day care, even with both of us working full-time. But, now they both required more therapy and a much bigger slice of the “time pie”. If one or the other was sick or needed to go to the Dr., one of us had to take off work, and this was a lot!  We both pitched in and survived this time period, but I have no idea how.  I suspect it can be attributed to sleep-deprivation.

In 2001, I decided to give up my full-time career for a more challenging daily life; managing my own boys. Even though my paid job required 60 hours a week, this new challenge proved to be no simple feat!  Jake was 11 and Joe was 9. Puberty was just around the corner and behaviors and changes were upon us. It took me nearly 6 months to adjust to this new lifestyle. After that, I planted my feet deep in the soil and held on.

This same time period was also a big year of change for the professionals that had been in Denver. Dr. Randi Hagerman, Dr. Paul Hagerman and his team, as well as Tracey Stackhouse and Sarah Scharfenaker (a.k.a. “Mouse), and others moved their practice to Sacramento, CA, to the M.I.N.D. Institute. This was a huge change for us and for the Fragile X community of Denver. The National Fragile X Foundation had already been relocated to California, so Denver almost seemed like a ghost town. For us, it also meant an end to the weekly visits with FX families, something we missed very much.  Additionally, I passed the torch for managing the Denver support group.  I needed to focus solely on our family.

Finding my “Path to Purpose”

We worked with various therapists for a time, continuing the methods and strategies that we had learned prior to this point.  In late 2002, Tracy and Mouse moved back to Denver. In 2003, they founded their own non-profit company, Developmental FX. What a miracle!!!  Now they were in Denver full time and providing multidisciplinary assessments, intervention, consultation, and follow-up in the areas of occupational and speech/language therapy, psychology and developmental medicine, for children and families. As a bonus, I could say, “I KNOW THEM!!!”  We worked together very intensely for several years developing a specific plan for our boys. We refined and “perfected” tasks and methods just for Jake and Joe.

Looking back, I believe that prior to this time I was not ready to take in or hear what needed done.  Of course, I had heard many of the very same strategies and methods to try from many others before this, but I wasn't ready to listen.  As they say, "Necessity breeds invention".  I understood now.

In July, 2008, I gave my first presentation of “Mrs. Rogers Neighborhood” (a seminar about living the "Fragile X Way") at the 11^th International Fragile X Conference in St. Louis, MO. I was so nervous!!!  I was sharing very personal elements about our family and our boys. The crowd was very quiet as I gave specific details about using visual schedules and some of the most difficult challenges we had faced. I cried along with the audience as the final video played. The session was over and I felt so proud of myself for doing it.  Sharing my own personal feelings was very difficult, but talking about our boys was easy.

Afterward, many, Moms’ in particular, approached me with questions and requests for more information. I knew then that my mission was clear. I needed to be available for FX families; to spread the word about what our kids with Fragile X CAN DO!  I needed to convey to other parents how much IS possible. Most of all, I needed to spread hope that it would be ok. We now knew that it would. 

Since that first presentation of “Mrs. Rogers Neighborhood”, I have had the privilege of presenting alongside Tracy and Mouse, the ones that mentored me, on many occasions. It is an honor to observe and learn from such experts who have dedicated their lives to helping create quality lives through treatment and support.

Chris, my patient and amazing husband, and I really started to shift our lives and our thought processes in the 2000’s. We started to see the potential in our children, as well as what our priorities needed to be. We began to make a written plan, and to implement many aspects of that plan. We became empowered.

In 2010, the conference was in Detroit, MI.  With every single one I attended, I saw more and more friends and learned more and more good information.  With every International conference I also have a renewed enthusiasm in helping others and spreading hope by sharing our story.  While there, I was a little bit overwhelmed by all of the new technology that had pushed its way into other kid’s lives while I wasn’t looking!  Thank goodness I had a few awesome new friends to help explain it to me!  I met Holly Usrey Roos and Eric and Melissa Welin one evening during the conference.  To this day, we still laugh about the discussion that night and my lack of technical skills.  They have worked so hard and patiently with me, and a friendship has blossomed like no other.  Like many others, this friendship started as a speck, but has grown to be so meaningful.

In 2012, I also had the privilege of going to Guatemala and talking to parents there.  Even in the face of very challenging ways, these parents still had much hope.  The new friendships formed there are genuine and sincere.

Fast Forward to Today

There are conferences held, like the one held in Miami in the summer of 2012, that draw well over 1,000 attendants from all corners of the world. This is due in no small part to the hard work of the many folks that now work for the National Fragile X Foundation. Even though this was my 9^th conference to attend (I skipped Washington, D.C. and Atlanta so I could focus on my own boys), it was still very familiar and very overwhelming.  I have come to realize that the learning and emotions are part of the evolution and a necessary part of the puzzle.

Parents are now connected daily by way of social media such as Facebook. They are united through activities that raise thousands of dollars each year to support the mission closest to their heart. LINKS groups (local Fragile X support groups) are established all over the U.S. bringing families together through organized and not-so-organized means (perhaps a FX moms a “ladies night out”). The bond among strangers and the unification of individuals is reaching points we never imagined as we sat around our dining table back in 1995.

Doctors are more educated and actually provide treatment to children and adults with Fragile X syndrome, FXTAS, FXPOI, and many other things that were previously unknown. The future of this field is very hopeful.

I have thousands of friends all over the world that I can talk to whenever I want. We are able to share concerns, tears and laughter over things we have been through or are going through right now. It’s amazing.

So much has changed in the world of Fragile X and it is our duty and honor to pass the torch, to make sure that others know our common history, to remember the ones are that cut the track and then paved the way. It is important not to forget who:

Discovered Fragile X;

Founded the National Fragile X Foundation;

Makes each and every International Conference possible;

Discovered ground-breaking methods for day-to-day functioning of our kids;

Has seen families constantly and cared for them;

Has dedicated their lives to this genetic cause;

Lobbied for monumental legislation like IDEA;

Helped create educational innovations such as “Integration”;

Continues to research and discover new and amazing things about Fragile X;

Saw a need to bring together families and organize support.

Look them up and become familiar with them.  It is our history and we need to know.

All of these things are ongoing, but they had to start somewhere. I was mostly just a spectator, but when I was a participant, it was my privilege.  All of this history is what makes me who I am today. Then, I couldn’t imagine my life with Fragile X.  Now, I cannot imagine my life without Fragile X. Kind of ironic, isn’t it?

Looking to Tomorrow

As I recollect my past and that of my family I am struck by the vast contrast between our lives now and the hardships endured by our ancestors before us. Whether it is the challenges of Fragile X, or suffering, or tragic death…they all teach us lessons. Our story is unique, but it is not different. It gives us perspective. The rewards for being a parent of kids affected by Fragile X are not extrinsic.  My perspective comes with inner accolades.

After 21 years of Fragile X, we are now able to realize that the Fragile X world is only a small part of the grander universe, just one star in the Milky Way. Yet, we have spent almost half our lives immersed in this world.  Sometimes I wish I could just “opt out”, like that first Mom I called. Obviously, that was not the road for me.  I have no idea how long Chris and I will continue to be involved. Only time will tell. For now, Jake and Joe still live at home with us and we have some years left to work before we can retire, so in reality, “Fragile X still lives here”. Our future is still being told and we are still working on the final outcome.  We have our list, and our goals, many of which are checked off.  We will continue to plug away.

As a person, I believe I have grown more than I ever imagined.  When I was young I had a very idealistic view of what my life would become.  I was very goal-oriented, and I still am, but now those goals are realistic and measureable.  My life has exceeded those goals.  Never did I imagine that I would have the patience I have, or the passion for life, or the level of personal satisfaction that I have reached. 

As a couple, Chris and I are stronger than most others we know.  This thing called Fragile X has helped us grow together in a way most will never experience.  We have a unified mission that drives us each and every day.  It’s forever.

As a family, we are committed to making a beautiful life together and going the full distance.  I think we are on the right path.  One of my favorite sayings is, “Your perspective is only as deep as your experience”.  I think we have a pretty vast and positive perspective.

From where I am sitting now, it is so peaceful to look back now.  To see how much we were able to positively affect change in our boys once we figured out what really needed done.  The realization that it was us that needed to change, not the boys.  Once we resolved ourselves to bending to meet them where they were, and working hard to lift them up…..life became good.  Once we realized how we would fit into their lives…..contentment settled in. 

If only it were easier to help others see through the lens of my life.  If only I could help other parents skip the hard part.  This would be heavenly.  I will keep reaching down to lift them up if I can.  I will keep telling others about how good life can be with Fragile X tagging along.  Chris and I will keep plugging away at giving our boys everything that we can.  It’s going to be ok….we know that now.

I often defer to the words of Mr. Fred Rogers of “Mister Rogers Neighborhood”, as his words give me much comfort:

“Very early in our children's lives we will be forced to realize that the "perfect" untroubled life we'd like for them is just a fantasy. In daily living, tears and fights and doing things we don't want to do are all part of our human ways of developing into adults.”~~Fred Rogers



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

My Fragile X Life-A Chronological History-Part 1

As I was cleaning out some files the other day, I ran across one marked “Fragile X Presentations.” Inside I found an article I had written way back in 1995 — only 4 years after our diagnosis. As I read it, my mind drifted to that long ago time. It was clear in that article that my emotions were still pretty raw. Such remembering provides me with a perspective which helps me celebrate the challenges we’ve overcome rather than focus on the depth of what we’re in at the moment. A lot has happened since then, both personally and in the world of science; I didn’t always have this perspective, believe me.

Our boys, Jake and Joe, were both diagnosed with Fragile X syndrome in 1991. We were provided a full packet of paperwork by the geneticist at our first meeting, which included the phone number of a local mom. Back then, we didn’t have e-mail, there was no Facebook and there was very little contact with other families. I finally worked up the courage to call the mom who was, at the time, the leader of the Denver support group. She told me, “I am not really going to be very active in the support group anymore due to my parent’s health. My son is now living away from home and doing well, so I don’t really have the time to dedicate to it anymore.” As a newly diagnosed family, we couldn’t imagine a time when fragile X wasn’t our world and the idea of “not having the time” for it was unimaginable. It was too new, too fresh. With the benefit of 21 years of perspective, we are now able to realize that the fragile X world is merely a speck in the whole scope of the universe yet, at the same time, we have spent almost half our lives immersed in it.

The 1990’s were a decade of learning, evolving, and grieving for us. Even with as much as we had learned already in our journey, we discovered that there was still much work to be done, especially on the home front. The 2000’s turned out to be a decade of change, challenges and implementation. Today, Jake and Joe still live at home with us and we still have some years left to work before we can retire so, for now, our future is still being told and we are still working on the final outcome. I have no idea how long Chris and I will continue to be involved in the Fragile X community.  I suppose only time will tell.

What follows is part one of a two part series; I hope families who are not so far along in their journey can perhaps learn something from our experiences, from how our lives have evolved from those early days of shock to our current days of (mostly) joy.

In the Beginning

As I said, our boys, Jake and Joe, were both diagnosed with Fragile X syndrome in 1991. I don’t remember the exact date like many of my friends. For me, the exact dates are not important; it is the outcomes that stay with me. It would be difficult for me to recollect all of the details of the past 21 years, but certain things do stand out in my memory.

I remember the geneticist telling us at our first appointment that, “Jacob will never go to college. He will likely never live on his own, but will probably live in something called a group home setting.” Those words settled themselves in my mind but I considered them a challenge, not a conclusion. We spent the next several months at doctors’ appointments, therapy appointments and just trying to figure out what we were faced with.

We had some contact with other local families in those early days. I remember the meetings at other people’s homes. I also remember some of the information that was shared. Jake was only about 3 years old at the time, and some of the stuff we heard from the other parents was frightening! We were not at the point where we could relate yet.    We were still in shock and trying to figure out what Fragile X meant, and what was next.  We were so afraid of the unknown, of what the future would or, more importantly, would not hold.  If we based our expectation solely on what we heard from others….it would be bleak.

One of the first memorable pieces of reading that was given to me was a poem called, “Welcome to Holland,” by Emily Perl Kingsley (http://www.our-kids.org/Archives/Holland.html). It is one of the most highly circulated in the fragile X community. It still rings true every time I read it.

Getting Involved

Then, in early 1994, the amazing Dr. Randi Hagerman brought together several families from all over the state of Colorado to participate in an activation of grant funds that were to be used for families. The group decided to use the money to try to organize and establish support groups in the four main areas of Colorado. There would be Northern, Western, Southern, and Metro Denver area groups. I got busy making phone calls and sending out letters to all of the families listed on the roster. The meetings were sporadic, but welcome for us.    It was the chance to know that we weren’t alone.  Fragile X was not well known at all, but at least we had other families that were in the same boat with us. 

Doctors Paul and Randi Hagerman had founded the National Fragile X Foundation in 1984, and by 1994 there was an office in downtown Denver. The staff were all volunteers except one director. I tried to spend a little bit of time helping out. I was an Executive Assistant for the President of a world-wide engineering corporation at the time, so I could offer some organizational skills and general office knowledge. Much of the work that year was in preparation for the 4^th International Fragile X Syndrome Conference, which was to be held in Albuquerque, NM. Looking back, I now realize how important the Foundation already was to so many people; it was providing loads of information to families all over the world.

Around 50-100 people attended that conference in Albuquerque. I made the drive from Denver with another mom so we could share expenses. We made the best of the 10 hours by chatting and comparing experiences. I had the pleasure of meeting other families like Julie and Rick Schleusner, Jayne Weber, and Arlene and Jeffrey Cohen. It was so nice to meet others that had the same questions as I did and the same worries that kept me awake at night. Both the Schleusners and the Webers lived in Colorado, as did many of the other attendees. Professionals from all over the country and the world were also in attendance. I have since thrown away much of the information that was shared at this conference (I think 2 file cabinets full of information on Fragile X is enough, don’t you?)  but, suffice it to say, it was ground-breaking in the field of fragile X at the time. Most of the parents in attendance were all still in the beginning stages of diagnosis - grief and utter dismay.

It would not be until many years later that I realized how lucky we were to have lived in Denver during this time and how lucky we were to have met Dr. Hagerman. If we had to have Fragile X, we were in the right place at the right time.

1995 was a big year in my own life. My mother, sister and I were traveling back and forth from Denver to Detroit visiting my mom’s ailing parents. We made many trips between 1994 and 1996. During one of these trips, we had the pleasure of spending an afternoon with Arlene and Jeffrey Cohen. I remember this visit well. It was so nice to meet other kids around the same age as our boys and to see them in their own home environment. Seeing some of the exact same emotional and behavioral difficulties that we were grappling with made me feel right at home.  We chatted for hours like we had known each other for years.  It was all very familiar.  It made a difficult trip more enjoyable. The Cohens have been a continuous force in the Fragile X world and I feel honored to know them.

Building Awareness

I too have strove to build awareness of Fragile X – even when it meant stepping WAY outside my comfort zone.  In 1995, I did something that was totally out of character for me all in the name of fragile X. It was my personal mission at the time to help spread awareness about fragile X. Knowing that so few people knew what it was or how many would be affected maybe made me a little bit crazy at the time…you be the judge!

I saw an ad for a beauty pageant for Mrs. Littleton, Colorado. The requirements were minimal, most importantly I did not have to have a talent, so I registered, prepared, competed and, much to my surprise, won. Then, I had to compete in the Mrs. Colorado pageant.

When I met the other contestants at the state level competition, I realized that I had no idea what I was doing. These women were serious and I was just doing it for exposure! I had never done anything like this while they all certainly had. I felt out of my league. I didn’t have near the time to dedicate to it as they had but I did learn many things from these ladies.

Never in my life did I think that I would have the need to use spray adhesive to hold clothing in place. It sure helped when I found myself parading around in a bathing suit in front of hundreds of people though! Nor did I know that duct tape could have so many uses! My husband knew it was an all-purpose application, but me, never. Oh, the life lessons we learn on the the Fragile X road! These shall stay with me for all my life.

The night of the competition, Dr. Hagerman, Tracy Stackhouse, Louise Gane and Sarah Scharfenaker were in attendance, along with many from my family. It was a night I will never forget. Some days I wish I could wash it from my memory, as it is so uncharacteristic for me (I actually wince when I think about it now). I did feel quite special though. Others sometimes say, “I felt like a beauty queen,” but I actually did! I placed 11^th in the competition when my special night was over but I did teach at least one more person about fragile X. During both my stage and private interviews I spoke solely about my Fragile X platform and what it meant to me and my family. Mission accomplished.

Into the Thick of It

Later in that same year, Dr. Hagerman asked if Chris and I would like to be sort of a family liaison to visiting families and we agreed. Families visited the Children’s Hospital of Denver Fragile X Research and Treatment Center just about every week to see Dr. Hagerman, and we wanted to help. We decided that we would host as many families for dinner as we could during their visits to Children’s. It was just a small token, a simple sharing of a pizza or hamburgers on the grill. Little did we know how therapeutic this would be for us as well for the other families.  I often felt like I could just sit and observe the other families.  I wished to see myself through someone else’s eyes and to see their children as my own.  When families with older children visited, I was very curious to know if my own boys would be similar to them.  I was gathering information and storing if for a later use.

Over the years, we had the absolute pleasure of meeting hundreds of families including; the Devines in 1998 (Denise reminded me of the date because they remembered the John Elway Superbowl celebration during their stay); Leslie, and Joe Garera with their son in 1996 and 1999; Suzanne Balvanz and her son around 1995. Many are quite memorable…some for funny reasons, and some due to our own meltdowns during the visit. Many of these families we met in the early years have since “retired” from the fragile X life, but several remain. One of the most marked things that has stayed with me is the fact that these families thanked us profusely for the meal and the visit. What they didn’t realize is that we gained MORE from the visit than they ever did.   Looking back now, I feel as if these visits provided more insight into those unanswered questions.  It was hard sometimes meeting older children, but in hindsight, it was so helpful.  It also gave me confidence to know that parents with older children survived.  They had a certain calm about them that I longed for.  We received a therapy way beyond what any doctor could have given us. We cherish those memories.

In the summer of 1996, I attended the 5^th International Fragile X Conference in Portland, OR. There were even more families this time, and many with older kids. I remember feeling very hopeful. I felt a connection to many of the people at this conference. Since I had already met the Gareras, the Cohens, the Devines and many, many others, it was already like a reunion.

One thing I clearly remember about some of the early conferences were keynote speeches by actual adults with full mutation Fragile X.  The young men that gave the speeches were very brave and courageous.    To see these young men get up and have the courage to speak in front of hundreds of people, and to be able to call up and deliver the words was amazing to me.  These sessions were standing room only and always ended with the entire house in happy tears.  I dreamt of my own sons doing that one day, but it was not to be.  At this stage in our journey we had no idea how affected Jake or Joe was, and we had no crystal ball to tell us the future.  Neither of the boys were speaking much at this point, so all I had was my dreams.

Taking to the Road

In March, 1997, I had an opportunity unlike any other ever in my life. Dr. Hagerman invited me to attend a conference on Fragile X in Paris, France. This was also the first time that Chris and I would travel outside of the United States. It was so humbling and we were so full of excitement. We met many parents from all over Europe who also had children with Fragile X syndrome. I was asked to talk about our experiences in raising 2 boys with Fragile X. I had to force back tears as I read from my script. It turns out that our experiences in the U.S. were vastly different from those in Europe. We returned home feeling extremely lucky to have the doctors and therapists that we had, as well as our education system. It was such an honor and a memory that I will never forget.

As word of Fragile X reached more and more people through the awesome work of Drs. Randi and Paul Hagerman and others, it finally caught the eye of a reporter at the Rocky Mountain News in Denver, Colorado. In April, 1998, the newspaper sent a reporter and then a photographer to observe our little family. I have held on to this one piece of memorabilia for some unknown reason. The pictures take me back to a time when my energy was so spent.

After our first trip overseas, Chris and I were eager to return, so in 1999 we did just that. We took a vacation to London, U.K. for 10 days. Since we had met a few families in 1997, we were honored to be invited to the personal home of a family in London. We had a lovely dinner and shared experiences with 4 other families. We sat around a large table, shared wine and especially stories of our lives in living with Fragile X.  The words escape me to describe how wonderful this was. Many of these families are no longer involved in the fragile X world, and I miss them.

Next Steps

As we approached the end of our first real decade in living with Fragile X Syndrome, we still had many emotions and other issues that had to be dealt with.  We knew it.  Now we felt like we had some of the tools we needed to go forward.  We still had some learning to do, but we knew more than we started with! 

I have always been told that I am a very “pragmatic” person.  Even with something as major as Fragile X, I never really focused on the “why” question or the possible answers.  Everyone is different in how they handle such a big things in their life.  I tend to be one more for action than questions.  Some may call this being a “fixer”.  Heck, if something doesn’t work, try again, that’s my motto!  I am sure I had many sad moments that involved grieving for the loss of our expectations, etc.  Or, maybe we never had any?  I don’t really know now.  We were very much engrossed in the day-to-day care of the boys, juggling all of the school issues, and trying to provide what we thought was a quality life.  We still had more work to do and more challenges to come.

But what we DID have was a sense of bond with many other families.  To think that something called Fragile X brought together strangers from all over the country and the world, and made a new community.  We never had to feel alone again.  We also had a real sense of purpose that would help motivate us when the times got really tough….and we knew those days would come.
Continue reading part 2 here http://www.mrsrogersfxneighborhood.blogspot.com/2013/01/my-fragile-x-life-chronological-history_18.html



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