Tuesday, July 9, 2019

My Life-A Race to the Finish Line

Our family enjoying the beach in FL, October 2018
When Jake and Joe were first diagnosed at the ages of 2 and months-old, I rarely thought about what my or my husband’s death would mean to their lives. I was too engrossed in the day-to-day. My thoughts were consumed with which therapy appointment I had to tote them to, or trying to interpret their every need when they couldn’t tell me.


As the boys passed toddler-hood and moved into preadolescence, my time was still depleted by their every need while contemplating which IEP goal I needed to focus on, how to stop shirt chewing, or the ever-elusive hand biting or groin scratching. I couldn’t face even the thought of looking too far into the future. There was too much uncertainty.

I wasn’t able to even conceive what Jake would be doing when he was 16 years old, or how Joe would learn to cope with all that consumed his little body when he was 10. The future was too scary to foresee, especially on those bad days when everything Fragile X Syndrome looked me straight in the face. Yes, there were even days when I hated that I had to think about all this when my friends were doing something totally different. Jealousy abounded.

My thoughts were only a dark place where images of the worst scenario lived. I couldn’t see the hope that existed within their ability or the people that endlessly supported us. Then, as with all things, my thoughts evolved. The boys grew and learned and flourished far beyond what I could have conceived in my own thoughts. 

Fifteen years ago, I did something that dramatically shifted my thoughts.  I attended a workshop put on by the ARC of Colorado that included planning for their future, a session on Wills & Trusts, Legal Guardianship, an explanation of the different waivers available through our county agency, one on Social Security and a brief touch on employment.  I was apprehensive at first to learn about all of this intimidating stuff, but, it changed our life!

As I sat waiting for the first speaker to begin, I gazed around the room at the other attendees. There were Mothers, Fathers, Grandparents and Guardians. The speaker began to introduce the days’ agenda and asked us each to give a short introduction. After each person had given their short spiel, it was clear to me that I had the youngest kiddos in the room….a testament to the fact that I have no interest in waiting until the last minute for anything in my life. I don’t like the stress that comes with waiting until the moment is upon me, nor do I like not having all of the information available to make a decision and plenty of time to analyze it. It was evident that this workshop would provide me with tons of information to jump-start my thinking in a new direction.

I raced home with all of my notes, eager to share all I had learned with my husband, Chris. For months after the workshop, I was still energized enough to tackle some of the issues they had talked about.

Over the next several years, Chris and I took the leap and created a will and special needs trust with the help of a lawyer that guided us to make decisions. One statement during our consult with him still resonates with me today.

He said, “Make decisions on guardians and trustees based on today, not what you think the future will hold. You can always revise the documents later.” This gave me peace and the ability to sleep at night. It felt liberating to be able to check that one HUGE task off of our to-do list without going into speculation about who would be around in the future.

I had a pile of information on Legal Guardianship that we put to good use when Jake turned 18, and later, Joe turned 18. We breathed a sigh of relief as we crossed off that daunting task. I subsequently took another course on how to file the Annual Guardianship Report by myself in order to save a few pennies (about $1500 a year to be exact).

When the guys were eligible, we filed for and received SSI and Medicaid. This is a privilege that I still struggle with. I was raised by folks who never took a handout so it stings a bit to accept help. Knowing that it will assure services for the boys long after we are able to (or if we are unable to) is the one thing that gives me reassurance that we did the right thing. I feel like it never hurts to question convention. Just because others do something does not mean we have to do it…but, in this case we feel it has helped our sons more than it has hurt our mental struggle. We strive each day to fulfill our part of the responsibility for our sons, too.

During our sons’ journeys through middle school and high school, we heard many options for employment, or ideas on how to obtain employment. This was the hardest thing by far to envision. We were told, “Think about your sons interests and focus on those.” I wondered how we could capitalize on an extremely high interest in Sesame Street or Mister Rogers Neighborhood as a job opportunity. Well, suffice it to say that we worked methodically and exhaustively on securing motivating and interesting jobs for both of our sons. I detail all of these challenges in my book, “Becoming Mrs. Rogers” (Click Here to order) if you wish to read more about that.

The compilation of everything I learned during that workshop caused us to write down a conceptual 2-year transition plan on how we hoped to retire without our sons and leave them in the care of others in our own home. Mind you, it’s been only on paper without super-fine details attached up to this point. There were some holes in the plan that we just could not fill 10 years ago when we wrote it. But, it would include the fact that we’ve left our home in trust for our sons so that they can viably stay in their own home with constant supervision. As with all things in their life, it requires a VERY gradual, methodical change in order to be successful.

This entire transition plan, we knew, would cost money.  We had no exact idea how we would fund the caregivers or the upkeep of the house. So, some years ago, we established some ways of saving money in the trust. I also continue to tap away at a 3-ring binder that will record facts about the upkeep and maintenance of the house. This gives us an idea on how much it will cost…. but nothing is perfect when you are projecting into the future. It’s a start, and perhaps a middle.

This month, a big thing happened. Jake qualified for a different waiver that will help fund his caregiver for the rest of his life, despite us believing that he would never clear the wait list we faced when he signed up at the age of 15. This came long before we ever thought it would. It was the best and the scariest news yet. We are thrilled that the question, “How will we fund the caregiver?” has been answered, but it puts things in motion that we were not ready to think about in our mid-50’s.  We will be ready. We are prepared to move forward, not backward.

It’s been fifteen years since that workshop, and we’ve arrived at a really good place in our lives. Our worst nightmare never came to fruition despite the worry. I only wish I could have that time back to spend in a more productive way.

Chris and I have spent a great deal of time over the last year talking and implementing many things that we need to tick off of our list in order to know that our due diligence is done. It’s been difficult to say the least. Morbid for some to even to read about, I know.

We are working with our lawyer to complete the third revision of our Trust as I write this. It’s all evolved in a very natural way and has come to a better ending than we ever imagined. We feel at peace with the decisions we’ve made so far.

Over the past year, we’ve taken time to talk about and resolve issues surrounding our own quality of life and the life after that.
-We were able to purchase long term care insurance so that when no one is able to care for US, there will be a plan. It was a nagging, unresolved issue that has since been dealt with. One less worry.
-We are in the process of pre-paying for our own funerals so that no one will have to think about or decide what to do. Check it off!

Another thing we have come to realize is that our sons enjoy many of the things we do, including spending some time at the beach during the cold, long winter months. So, we are exploring the idea of getting a small place in a warm climate where we can begin to practice another transition that will, hopefully, carry on after we are gone. It’s a work in progress. The ability to envision a positive future has allowed these thoughts to flow through and be a bright spot as we get older.

Our sons have some of the best quality of life of any people we know. They love their home, their jobs, their friends and all of the opportunities that come their way. Behaviors are still with us, but in a minimal way. No one in our family is perfect, so we do our best. Yes, we still have some learning to do before Chris and I exit this earth, but we have faith that it will all happen in due time.

So, for now and the rest of time, we are vowing not to spend every waking moment thinking about Fragile X Syndrome or what will happen when we are gone, but making memories to last a lifetime.


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



Thursday, May 9, 2019

I WILL ALWAYS BE THEIR MOM




First I was a girl
Then I met him and I became a wife
I held our firstborn in my arms, and I became a Mom
We became a family

I worried about a sniffle, a cough or a tumble
He grew, but at a rate that didn’t seem quite right
A Mother’s instincts are stronger than facts

We longed for more love
So we had another son
As I held him in my arms
Many questions surfaced

The day I heard “diagnosis” was a new chapter of sadness
My worries grew and grew
I felt unrelenting guilt as I gazed into his blue eyes
The gene came from me

I prayed to God for some kind of resolution
If only I could do more
I knew if I did more that it would cause a cure

No cure came
But the behaviors and challenges did
I saw my sons as a representation of Fragile X
Long face, prominent ears, speech delays, motor delays
It defined my every waking moment

I didn’t know how to love this
I had to redefine my expectations

I quickly learned to always have the green Gecko shirt clean
Then I learned to buy 5 of everything
Then I taught him to do his own laundry

Waiting was especially hard
So I hurried at everything
Then I taught him how to wait
This took a very long time

I was consumed by all things Fragile X
School meetings, therapies, strategies, approaches
Each day was a learning experience
How to dress, how to learn, how to care for their every need
Then I saw that they could learn some things
And do some on their own

As the years passed, we continued to learn together
I focused on tasks and jobs and life skills
They rose to unexpected heights
They taught me patience and perseverance
I am still learning those

Together we learned how to live together
I learned how to cope with my own expectations
They learned how to tolerate me

Then, finally, we learned how to live
It took me a long, long time
I had to give up the traditional definition of Mom

We had to learn how to spread our wings
And fly together
In an unconventional path

Now, I almost never think about Fragile X Syndrome
I like to think about quality of life
Sometimes it’s a quality of life without me
Without Mom

I’ve learned that it’s ok to think
About their life without me
Life without Dad
Life without family

It allows a new realm of thoughts to emerge
New thoughts about reality
New difficult questions
Who will care for me and Dad
What about our own retirement

These question bring about worry
But it's also forced us to act
Action has brought about peace and contentment
We are able to breathe deeply
We are able to feel encouraged

I found out it can be ok
We are making plans
Transition plans
Quality of life plans
Difficult plans

The best things can happen when
I allow myself to think ahead in a positive way
To take action instead of worrying
The good people come through
They emerge when I least expect it
This has taught me to have faith

Nothing has ever or will ever be perfect
That’s part of my own learning
But they are perfect
And I am their Mom

I’m glad I’m their Mom
Even through all of the really hard parts
I’m grateful for all of the learning
Mostly for learning to cope

I’m forever a Mom
To two amazing sons
The learning will never be done
I will make mistakes
But they love me anyway

Thankfully
At 28 and 30
They still hug me daily
They still call me “Mom”
My love could not be any deeper
I will always be their Mom


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

Tuesday, February 19, 2019

Looking in The Rear-view Mirror




It’s taken me nearly a year to formulate the words to write this blog. My oldest son, Jake, turns 30 -years-old this week. If the very words weren’t enough to freak me out, then the facts could be. As I’ve come to this harsh reality over the past many months, my emotions have been a virtual roller coaster.

First, I began to feel a sense of panic over the fact that my son is 30!  T-h-i-r-t-y!  3-0!  That makes me….errr….well….not a spring chicken anymore! That also makes him not a young man anymore.  He’ll be 30! I don’t think I even had this much trepidation over my own 30th birthday.

Once the panic began to ebb, I felt a strong sense of urgency.  An urgency to make sure that my husband and I have done all we can to teach him what he needs to know to go forward without us—a fact that seems to be creeping closer with each passing day. This urgency comes when you have a son born with a cognitive developmental disability, and you are responsible for teaching them every single thing they need to know to be set up for their own success in life.  I’m not talking about business sense or some other professional nonsense.  I’m talking about very basic skills to get through each day with as much independence as possible, like dressing, showering and eating—basic life skills.  Gradually teaching Jake, and his brother, Joe, 28, who is also affected by the same developmental disability, is something that my husband and I have worked our butts off at for the past 20 plus years…in fact, I wrote a book about many of our methods and strategies in an effort to help others get to where we are-- Becoming Mrs. Rogers-Learning to Live the Fragile X Way! But, we are not finished yet.  They are not completely ready yet, and this frankly scares the shit out of me.

So, I do what I have always done….I take some time…..like a year….and I analyze my emotions and try to make sense of them in a way that helps me get a handle on them.  I have to find ways to cope; I need to be courageous and present for our family.

As I sift through my emotions, I find some calm in the one thing that has always been available to me—my hypothetical, historical rear-view mirror. I often find it helpful to gaze in my rear-view mirror in order to gain some significant perspective on a current situation. It allows me to use lessons from the past to cope with challenges that lie ahead of me.

Looking all the way back to when my sons were babies, and moving forward through some of the toughest challenges of my life to-date, helps me see that each one held a special gift.  Each challenge holds a special memory in my bank that I can draw on when I need that sliver of perspective. In hindsight, those gifts seem to be far more worthwhile than the actual time we spent toiling over the challenge.

I’m not particularly fond of the word “challenge”. I think it’s been grossly overused to the point where it no longer reflects the actual depth of each point it attempts to describe, but there isn’t always another word available. The fact is, who doesn’t have challenges in this human life, after all?

  • When we received a diagnosis of Fragile X Syndrome for both of our sons within a short span of months, my husband and I suffered heart-wrenching agony over the loss of “normalcy”. This taught us grace and passion for each other and our family beyond anything we could have gained otherwise.
  • As we painstakingly navigated ages 0 to 7 years with our sons, we wondered why the word “sleep” was ever created. We had not seen much of it! We were consumed with attempts to get them to rest, particularly our youngest, who, as it ended up, did not sleep through the night until he was 7-years-old. We steered our way blindly through each day and then each night as the years passed and we grew more and more weary. It took 7 years, but those days and nights did come to pass and we are all finally sleeping. Now, it only seems like a distant memory, but vital in the scope of life teachings. This difficult lesson taught us to appreciate good sleep and all that is brings to each day.
  • When we grew frustrated and tired over, what seemed like eternity-but was probably 2-3 years, our youngest son chewed the collar of his t-shirt until the seams separated and we continually applied cream to his raw chin until we were blue: this experience taught us patience and resilience beyond anything we could have imagined.
  • We ached from hunching over as we held our sons hands above his head and emulated the motions of walking, praying all the while that he would walk at the conventionally appointed time, only to be shown that forbearance was a crucial skill that we must learn. Each of the boys reached this milestone in their own time, but they did walk!
  • We cried and tried to anticipate the day when Jake would utter his first words. Our patience grew weaker and weaker as the years passed. We thought we had done everything we could do to facilitate the arrival of that huge milestone.... it finally came at the age of 6 when he was completely ready himself. This taught us faith in things we could not change.
  • I remember a seemingly insurmountable sadness and worry over our years of struggle with our youngest sons’ aggression as he navigated through puberty. This poignant challenge taught us morality and then it taught us everything else we needed to know on how to live the Fragile X Way.
As we face yet another struggle of unknown origin with an unknown cure, we find peace in that ole’ rear-view mirror once again. Joe, who has never had an OCD tendency in his life, unlike Jake whose had so many we couldn’t possibly count, developed an OCD behavior that we have not yet remedied despite 9 full months (so far) of attempts. The facts and attempts at a solution read something like a case study which I may blog about in the future, but for now remain an action plan. We are learning more about persistence and perseverance….even at the ages of 28 and 30. 

I could easily describe in endless detail 1,000 struggles, 1,000 trials and tribulations, 1,000 gut-wrenching challenges. The truth is, now that years have passed, I am able to look through that rear-view mirror and glean so much perspective that I am able to cope more easily. I only wish I could take back so much of the time and effort I wasted worrying about those challenges. This is a lesson in-and-of-itself for me. I wish there was a way I could gift that lesson to the many other families that I know that struggle with these things.

Even though I still have momentary bits of panic, my sense of urgency gets less and less; my acceptance of our life grows calm.  Milestones come and go without incident despite that worry. I have faith that it’s all going to be ok. We'll get through this birthday with jubilant celebration for all of our sons' accomplishments and the joy that he brings to us every day. Thirty is just a number--not an accurate reflection of the "miles" we've traveled.

Besides a birthday, this week, our family also hits another huge milestone. We are planning our 6th airplane flight with the guys, but our first international flight. It will be a glorious break from the cold winter we are having here in Colorado. Both boys have somehow mastered the major steps required to take a flight, so adding a couple of steps for Customs and Border Security should be easy enough.  As a precaution, I’ve advised Chris that he and I should have a little drinky-poo on the plane so that we can set a good example and be ultra-relaxed when we arrive to face whatever unexpected, uncontrollable issues arise. It never hurts to be prepared.

Just in case, I’m packing a rear-view mirror.


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

Monday, August 27, 2018

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.




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

Tuesday, July 17, 2018

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

Monday, May 21, 2018

You Are Special


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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