Wednesday, July 5, 2017

What the Facts Will Never Show About Fragile X Syndrome

July is National Fragile X Awareness Month…..and there are a lot of things that you will NOT learn about Fragile X Syndrome by looking at Facebook or Twitter.  Let’s start with the things you will learn by going to the website or by reading posts from people on Facebook or Twitter.

-Fragile X Syndrome is the most common inherited cause of intellectual disability and autism and can range from mild to profound impairment.
-The gene responsible for Fragile X is called FMR1 and is found on the X chromosome. Everyone has the FMR1 gene on their X chromosome
-The FMR1 gene was identified in 1991.  The FMR1 gene makes a protein (FMRP) that is important in brain development. Individuals with Fragile X Syndrome (FXS) have a deficiency of this protein.
-Mutations or changes in the FMR1 gene lead to developing one of the Fragile X conditions.

There are a myriad of other things to know factually and scientifically about this genetic developmental disability, so I hope that some percentage of you will take advantage of the onslaught of information available during this month to really learn about Fragile X syndrome.

I consider myself to be highly qualified to speak on the subject due to the fact that I have two adult sons that were born with Fragile X syndrome.  Somehow, 26 years of living with it makes me a certified expert….or something of that nature. 

Sometimes, I find much of the information on the subject to be equivalent to blah, blah, blah, blah…..blahhhhhhhhh.  All of the scientific jargon is well and good, but it doesn’t get to the real picture of what our life truly looks like.  For that, I need to dig deeper and take a chance by opening up myself so that you can glean, perhaps, even a small taste of what it’s like day-to-day.

There are good days and bad days, much like every other human being on the planet.  But the bad days can be really bad.  Behaviors have been a big part of our life, although they have dissipated as our sons have aged.  Sleep problems are also common in children with the full mutation of fragile X, which in turn, causes the parents to be sleep-deprived and cranky.  Stresses about the children’s needs and the financial means to meet them are ongoing.

As a couple, our worries are unlike any other couples that we know—they are far-reaching, and will never end until we die.  Our children will be our responsibility until that time; day……………and night. We will likely never be “empty nesters” in the true sense of the word. Having a night out together as a couple can be a real challenge, let alone a weekend away.  Imagine…..finding a “sitter” for two adult men, ages 26 and 28 years.  Not an easy task.

Getting our sons jobs, helping them in everyday tasks, keeping them safe, coordinating appointments, mastering technology so that we can try to stay ahead of whatever device is necessary in their routine, and on and on and on and onnnnn………… can be overwhelming and exhausting.

But……we’ve found ways to cope with all of it.  It’s become our way of life and we’ve managed to create a pretty nice life at that.

In the midst of all of this lack-of-what-we-don’t-have, let me also tell you what my husband, Chris and I do have that facts will never display.

We’ve become members of a society that no one wants to join, but once there members are glad to be a part of. As a result of some stupid gene that mutated without our consent, we now have friends all over the world that I know we could reach out to on any given day, make a request, and it would likely be met with the words, “How?” and “When do you need it?” We share a special bond.

There have been many opportunities for our family to meet other families in smaller venues; more intimate opportunities like the one we just left.  Our family just spent 5 glorious days with two other families, in the beautiful splendor of Montana camping and enjoying every moment together. When we were together as families, these friends never asked why our sons do this thing or that. There was never any question about what kind of disability our son has, or why they are on a certain medication, or why they might open the RV entry door appearing solely in their underwear.  Nothing was strange.  No explanations were needed. No looks of disdain or embarrassment were exchanged between parents. It was so comfortable, like my favorite pair of aged, well-broken-in shoes.

Our children never felt weird around each other, never needed to have constant interaction, or even say a word to each other to know that they were there….just being themselves.

A simple 99 cent beach ball provided hours and hours of fun in the campground swimming pool for seven kids ranging in age from 10 to 28.  No questions were asked. The directions were simply understood and everyone was in the same zone. The feelings of joy abounded as each child did his or her part to play the game of hitting the ball back and forth. Each adult beamed with a smile from the skills that their own child and those of others, exhibited.  Perhaps there were newly found skills, or perhaps they were familiar.  It didn’t matter. A warm relief rose up in me knowing that my sons were having so much fun. It didn’t matter what genes they were born with. There was no attention paid to the things they couldn’t do. The focus was simply on fun.
7 kids and 3 Dad's with our 99-cent beach ball

During several sessions of swimming and beach ball hitting, another beautiful thing happened. Other kids without fragile X syndrome saw how much fun we were having as the ball volleyed back and forth between kids and parents, and they wanted to join in, too. There were small kids and even teenagers that paid no attention to any genetic developmental disability—they just saw fun and wanted to be a part of it. They were just being kids.

We shared three meals a day together, accommodating everyone’s taste preferences, without incident. Bedtimes were flexible based upon each person’s personal routine (routines are critical in our life!). No sacrifices were made. Parents helped each other’s kids with mindless effort. Stories were shared around the campfire as heads nodded in familiar adoration.

The daily feeling of anticipated-explanation and necessary definition-giving conversation that the public requires were absent during this 5-day trip.  There was no need for these dreaded words. It was all unspoken, familiar experiences. THIS was the antidote that we all relished.

This morning, we gave hugs, elbow-fives, high fives, and hugged again to close this visit of friends that came together through a challenging, devastating genetic developmental disability. We packed up the last camping chair, and prepared “Rocket” (our RV) for the journey home.  Then, we waved incessantly until we could no longer see the physical presence of these dear, special friends.

Now, as Chris skillfully guides “Rocket” southward toward home, we both feel content and fulfilled. This visit was just enough of a recharge to get us through whatever may come our way, until we can do it all over again.  It reassures us once again that we are never alone. The importance of this one thing is larger than I could ever portray.
Our older son receives a long-awaited, but promised, "hoodie hug" from our friend

Next month, we will celebrate 32 years of wedded bliss and we will continue our effort to face each day with resilience, love and compassion. We will do our best to provide our adult sons with a high quality of life through focus and determination. In many ways, I think it’s what pulls us all together even closer. We are not perfect, but we do our best most days. It’s not easy when a marriage has the added stress of a fragile X gene thrown in. As July ticks quickly by, I’ll share a few of the experiences we’ve endured in our marriage…………… so keep reading.

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


  1. WOW! WE are in the same situation. 2 grown children with FX. son 32 and daughter 35. Years of working the process, IEP's, negative doctors and others, managing anxiety, managing expectations, finding the best professionals, testing, testing, testing! Multiple trips to Denver(Dr. Randi Hagerman)and others.
    Of course keeping our marriage in good shape. Jim Anderson
    The key for us has been to provide unlimited love, affection, reassurance, reassurance, reassurance, POSITIVE ATTITUDE(in spite of others, challenging the kids with a high but reasonable bar of expectations, many activities(swimming, horseback, soccer, baseball, track, basketball, music lessons, music concerts(Grateful Dead), travel and much more. Our life is now about exploring the ways my son will be taken care of when we are gone. That in MY greatest worry. We have mainstreamed whenever possible and have good results-mostly. Advocacy is critical and I don't take any bullshit from doctors, teachers or anybody that can not see the Brightside of our journey. Lots of smiles, happiness, craziness and a good life. I have no complaints.

    1. Hello Anonymous! Thank you for your comments. Do you know if we've met before? During the 90's my husband and I hosted families that came to Denver to see Dr. Hagerman! Our boys were very young, but I am sure I would remember you with some reminding :) We met literally hundreds of families. I do love your approach to life...positive, positive, positive attitude. The joy in life is meant to be enjoyed. We are right there with you.

  2. Thank you for this explanation of FX, so similar in so many ways. I am a single mom to a now middle-aged man child. Life can be stressful and frustrating at times. I wouldn't be able to handle this life, without my Lord and savior Jesus Christ. He is our Rock. We pray together everyday and we have some support from our family and our church family. We know that God will see us through every situation that comes up. God bless you, your husband, and boys. Thank you for your insight, and for sharing your adventures.

    1. Dear Carol-Thank you for your comments. It is so wonderful to have spiritual support and faith to get us through those hard times.

  3. Thank you for so eloquently putting into words the life of FX, we have 2 adult sons with FMFX 25 & 21. We spent an evening with you many years ago (2000) right after our diagnosis and enjoyed your hospitality, think about a trip to Eastern South Dakota, I know a few families that would love to spend time with you camping (one of our favorite things to do).

    1. Michele! We would love a camping "meet up" at our next opportunity to visit South Dakota! You never know where we will be in our "Rocket" :) I will keep you posted if we plan to be in your neighborhood!

  4. Have you considered some type of residential care for your adult children? If not, why did you not consider it? Will that not become inevitable down the road as parents age and pass on?
    We want to hear opinions and experiences of others, as we consider options for our disabled son for the future. Thank you,

    1. Hello! I do plan to blog about that very subject in the near future. If you want specifics, feel free to check out my book, where I detail our plan for the future of our sons. As you probably know, nothing is perfect, and no one will love them like we do, but we continue to have hope.

  5. We have a 13 & 15 yr old fragile x boys as well.

  6. I agree with this comment "We’ve become members of a society that no one wants to join, but once there members are glad to be a part of." I have a 27 year old son with FXS. We won't be empty nesters either and when he was young that concerned me. Now I thank goodness for that because I'd hate to be without him here.

    1. Hello Sue-
      We know your worries and we share them. You are never alone :)

  7. My 7 year old has FXS and Autism. He loves to swim but his shark life best is getting to small. Anyone have any suggestions for teaching him to swim. We work with him a lot and he is not scared of the water at all. But as we all know routines are important. Any suggestions would be great.

    1. Hi Pam-
      I do not have any specific suggestions on a vest, but wonder if you've tried looking on facebook? There are many groups of families also affected that might have a suggestion. I talk A LOT about routines and specific teaching methods that we've had success with in my book as well. We learned most everything from some of the top experts in FXS and I wanted to share them so I wrote a book :) Feel free to e-mail me on if you want to discuss this further. I'd be happy to help where I can.