Wednesday, July 30, 2014

It’s Never Really Goodbye….

Anyone who has followed my blog or facebook posts knows a little bit about our RV named “Rocket”.  We procured “Rocket” as our fourth RV in 2012 after years of successful trips and experiences with our two sons.  These are not “typical” sons…no.  They were diagnosed 23 years ago with a developmental and cognitive disability called fragile X syndrome when they were both very young.  (For more information go to

Like many years, this summer, we ventured out on a 3-plus week journey that would begin in California, take us up the west coast, project us eastward to Coeur d’ Alene, Idaho, and into Glacier National Park before taking the four of us back home to Colorado.  We don’t’ normally like to travel out of Colorado during the summer months, first, because Colorado is so beautiful in the summertime, and second, because everywhere else is either too hot or sticky for our liking or it’s too crowded!  This year was different. 

July of 2014 was the date for the 14th International Fragile X Conference in Anaheim, so we knew we had to make a much-desired west coast trip as part of that conference.  We needed to fill in our RV sticker map which only showed blank spots for Oregon and Washington so that the entire lower 48-state U.S. schematic was complete!  For me personally though, I had to make good on my promise to attend this conference as my 10th and final.  Why you may ask?  The reason is much simpler than most may think.

I remember many of the memories from the first few conferences I attended.  These were conferences packed with the world’s best experts on everything fragile X.  There are doctors, therapists, researchers, and many other parents; each one holding the key information that we would need to go one more day, one more month, one more year as the parents of a child or children with the genetic abnormality.  In the early years, I walked around the conference in a daze just taking it all in bits and pieces at a time.  I tried to go home and remind myself of each tidbit, but often ended up just feeling inadequate to handle all of it.  With each passing bi-annual conference, I grew more and more keen on what I was hearing, what I was learning and how to move forward.  I could tell other attendees were in the same exact boat.  No one felt alone.  As time went by, I could sense when a person I would lock eye contact with was a “newbie” or a “veteran”.  The level of tears usually gave them and me away.  I never wanted anyone to feel alone at this kind of family reunion.  Hugs would be exchanged and a few words of encouragement or support would ensue.  Then, it was friends for life. 

With each conference experience, I learned something even if it was just one thing; a new thing.  I gained more and more confidence in my own and our family’s ability to implement and handle whatever came our way.  We worked hard with experts in our own town to take it one step further.  We tried things and we failed.  We tried things and succeeded.  With each trial, we found ourselves succeeding more and more.  Each success garnered a new “tool” that would eventually make up my toolbox.  Chris, my husband, started to fill in his own toolbox with many of the same tools.  In a shrewd reality, he also possesses the one tool my own Mother describes as, “The war women have been fighting for centuries”….the dad voice.  I’ve tried to imitate it, but somehow it never works out for me.

We use our acquired tools every single day with these 2 boys; methods like “ready-not-ready”, side dialogue, picture schedules and more.  Each tool or method has required years and years of perfection, and still we are learning.  But, we feel as if we have a wealth of information to draw on and live with.  It still takes work each day, but now we are armed with all we need.  This knowledge is plentiful and crucial to our boys’ success.  Proof of this came in a loud and clear message for me this morning.

A bit of background:  After Anaheim, we stopped at several destinations, and eventually found ourselves in Seattle as a part of a planned stop to see family and friends.  During this stay, we got a call that forced Chris to fly home to take care of some business for a few days, leaving me and the boys in “Rocket” in Seattle.  This was not the plan!  I hadn’t prepared myself, let alone the boys for this kind of diversion.  We had to make the best of it in the name of survival.  We never had the occasion for me and the boys to be in “Rocket” without Dad.  On the contrary.  Dad often took “Rocket” while traveling and staying near a work site, leaving us at  home.  I had to figure it out.  It occurred to me, just this morning, that I had never had the opportunity to assist the boys in the shower in “Rocket”.  Never.  It wasn’t intentional, but Chris had always been around, so he did it.  It can be its own challenging routine for me to assist with showers at home, so this would require extra care.  I wanted it to be positive and successful in order to leave the door open for future opportunities. 

“Rocket” is not your typical RV.  She is equipped with everything one could possibly need to live anywhere she will take you, so this would not be a problem.  I pulled everything out of the cabinet that would be needed for showering; washcloth, deodorant, electric razor, and I placed the towel near the shower.  I prompted Joe, our most challenging son by far, for his turn to shower first.  He jumped right up from his spot on the couch and headed toward the bathroom.  I always keep a duplicate visual schedule for showering in “Rocket” mimicking the one we use at home.  I pointed to the visual without saying any words, and then I motioned for Joe to pick out some clean clothes from the drawer.  He went right to it.  Then, I pointed to step one of the shower process which is getting undressed.  This caused him to pause, sit down on the bed and proceed to get into a bag that was nearby.  I waited.  I used my calm voice and stated that it was time to shower and when he was ready he could begin by getting his shirt off.  Nothing.  I waited a few more minutes nearby, and again, stated that it was time to shower (pointing to the visual) and that I would wait until he was ready.  By now, everything that had been in this nearby bag was now all over the bed.  I disregarded.  It was not relevant to what I was trying to achieve.  After about 4 minutes, Joe took his shirt off, pulled his pants and underwear down to his ankles and again, sat down on the bed.  I know…I know…..don’t visualize it.  I ignored and so should you.  I repeated that I would wait until he was ready, but as soon as he was ready to shower we needed to get our pants off and put them in the laundry.  Nothing.  I waited.  The wait time now was a total of 12 minutes, which seemed like an hour.  I puttered with the items on the counter to indicate that I was ready.  Then, I repeated to Joe that I was ready, but repeated when he was ready I would help him.  I asked him if he needed help to remove his clothing.  At that moment, he uttered, “Help”.  I put my hand at his ankle, tapped his left knee to indicate that I needed him to lift his left leg.  After about 10 seconds he did.  I moved my hand to the right foot which then rose and his pants were off.  I handed them to him to put them in the laundry and without saying a word, he did. 

A moment later, I offered my hand to indicate that I was ready to assist with the step up into the shower, and he took it.  He was flapping the other hand and I knew this meant that the routine was causing him some hyperarousal.  I proceeded slowly and methodically.  I asked him to turn the water on.  He did.  We carefully moved through our normal visual schedule one step at a time, taking all the time we needed to get the task done and do it with care.  It was done.  We made it through.  Total time 40 minutes.  Do I care?  No.  Did we do it?  Yes.  Will Joe trust me to help him again?  Yes.  Did he care that Dad was not here.  Yes, but Mom said she would help him and I did.  We survived.  These are the kinds of skills and methods that I have learned over 23 years, at 10 International Fragile X Conferences and with individual consults from the best professionals anywhere.  I know I can persevere.

This knowledge and its implementation is something that I think any parent would do if they needed to.  It’s certainly not something I had a life goal to learn, but it has helped us tremendously in the life we have.  As parents, we do whatever is needed to survive!  This fact alone contributed to my slight embarrassment and overwhelm during the amazing going away party that was given in my honor during the conference in Anaheim.  Some of my dearest friends showed up to give a most wonderful tribute to my time in this fragile X world.  To me, though, it just seemed like a very natural thing.  It never seemed extraordinary or exceptional.  It was just a natural evolution and sharing of knowledge that was meant to make our own life better.  Why wouldn’t I want to pass that on?

The hundreds if not thousands of kind, giving, sincere, incredible, amazing people that I have met and remain friends with at these conferences will not go away.  We will not go away.  The gifts that they have brought us are irreplaceable; the gift of friendship.  It’s forever.  The HOPE that we were given in the early years has blossomed into a pool of cool, refreshing, rejuvenating energy that we try to share with every family we meet.  “Rocket” will continue to take us to destinations where we can meet and share this pool with other families.  WE will continue to need HOPE as we make our way into the future.

To learn more about me, Fragile X and my scholarship fund, please visit my website at

Update:  Day #2  Total time to shower Joe--19 minutes.  That more than a 50% improvement over day #1.  I often say that 1% better is still better!  The only steps I really had to duplicate were offering my hand to help him step in the shower.  He undressed himself, picked his own clothes, and moved through the shower routine just like normal.  I went through the basic same steps when prompting, but there was absolutely no waiting.  The downside is that Dad returns tonight and he is back on duty tomorrow.  I will be having a glass of wine :)

A special thank you to Tracy Stackhouse and Sarah Scharfenaker of Developmental FX in Denver for teaching us these invaluable methods that make each day possible.
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