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 www.fragilex.org)
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.
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.
To learn more about Cindi Rogers, read her full story at Becoming Mrs. Rogers
