Wednesday, October 9, 2013

My "Rocket" Men

Appendix provided in advance to ease your reading experience:
B.A.R.V. – Big A** RV
“Rocket”-The name of our RV
“DDD” – A Food Network program called “Diner’s Drive’-ins and Dives”
Fragile X Syndrome – A genetic developmental disability-for more information, please visit
Camping was never a goal for my life when I was young, but fate pushed me to it.  Fate can be a funny thing.  Who knew that it would be my fate to be married to the best guy ever, even though I met him in 7th grade?  Who knew that we would have 2 boys, and both would be affected by an intellectual disability called Fragile X Syndrome?  Who knew that we would love them so much that we would literally do anything, even camping, to help them have a better quality of life?  Oh fate is an awesome teacher.

Did you ever start out a journey with the intention of learning lessons?  We did.  You see, when you travel by B.A.R.V. you always learn some lessons. Our current B.A.R.V. is our 4th RV, so we have a little bit of experience.  We know that some lessons are intentional, some are not.  Some are good; some are ones you wished you had never learned.

The unintentional learning comes almost silently.  Lessons learned in an RV are unique; unlike any others; and filling a world of their own.  Like, when I am making my way to the bathroom while the RV is in motion, knowing full well that it’s better to wait until we stop.  I’ve known about my need to pee for at least 20 minutes, but now it’s urgent.  I venture out.  I straddle quietly over Joe, as he sleeps with his legs outstretched over the aisle of the RV, while it’s moving.  I don’t want to risk touching Joe, otherwise he will wake up, and God help anyone who wakes Joe!  When I do finally make it to the bathroom, I am forced to grasp the sink tightly while I pee, as Chris turns a sharp corner just as I sit down.  These are amazing skills that will carry me far in life!

Intentional learning usually occurs by way of a “learned” lesson.  For example, before we left home on this long journey, from Colorado to Massachusetts and all points in between, we reminded ourselves of a recent trip we took to the south.  On that trip, we had some wonderful families come visit us for a potluck.  One of the young men locked us out of the RV, unintentionally.  So, before we even took off on this trip, knowing we were going to see families and kids, we prepared….we thought.  We have a remote key fob with our RV and we made sure it was secretly placed outside the RV so we could get back in if a lockout occurred.   Is that enough foreshadowing for you?????

It is always the people that we meet and spend time with that make trips in “Rocket” fun and worthwhile.  Paola, KS, folks greeted us with warm weather and hot food from a “DDD” place called The BBQ Shack, just down the road.  We had about 6 families come out and spend some time, including longtime friends, Angie Grantman, Brooke Stack and her family, Christina Murphy and family, as well as Donna Beauchamp and Spouse.  The kids played with “Lulu” our dog, and entertained themselves with food and other activities.  There was a nice playground just feet away! 
Next thing ya’ know, the adults are all outside and we hear a pounding from the INSIDE of the RV.  “Help! Help!”  Uh oh.  It seems that Ryan Stack, 8 years old, had somehow managed to lock himself INSIDE “Rocket”.  Our son, Jake was also inside, but occupied with his computer while listening to youtube with his earphones on.  Ryan began to hyperventilate a bit and cried for his Mom to help him.  My husband, Chris, quickly reached for the fob and attempted to unlock the door, per plan!  We heard the “click”, but the door would not open.  This prompted Ryan to become more scared and more vocal in his request for help.  We continued to try the fob and help Ryan to calm himself.  Ryan’s Mom stood by as I tried to verbally guide Ryan to help himself to unlock the door.  Problem was, I could not picture in my mind what the task needed to be!  Very frustrating.  By this time, the “helpful people” that Mister Rogers always refers to in any crisis, were coming to our aid.  We’ve found that camping people are always nice and helpful.  A small crowd was gathering around the RV as people ascertained that we were in distress.  We continued this routine of trying to unlock the door, while Ryan continued to click something on the door from inside.  It wasn’t working.  Now, the neighbor offers to loan us a key that “might” fit.  Not.  “Rocket” has a specialized set of door locks, only available in aircraft of this kind.  Ryan kept saying, “Turn” as I tried to describe what he needed to do.  He was exceptionally calm whenever we tried something specific.  This I found to be quite amazing.  Crying and banging on the door one moment, and focused and calm when we directed our efforts.  Finally, it occurred to me that there was a little window next to the door that required him to “turn” the knob.  I asked him to turn it and to keep turning until it was opened enough for me to reach my hand in, pop out the screen, and be able to touch him.  Ok, we had some person-to-person contact now.  I couldn’t reach the door lock, but there was another set of keys inside a cabinet above the driver’s cockpit. It required Ryan to step on top of the driver’s chair and get inside the cabinet.  With direction, he finally did open the cabinet, but he (for some unknown reason) would not reach in and get the keys.  THEN!  All of the sudden, we remembered that Jake was inside.  So, we coaxed Ryan into getting Jake’s attention (this is hard to do when he is watching youtube)!  Jake, calmly, got up, got the keys and handed them to us through the open window.

You might think that the lesson learned here was to keep a full set of spare keys outside of “Rocket” for occasions just like this.  No.  The lesson for me, personally, was to always remain calm.  It would not have helped if everyone was on the same upset level as Ryan.  It also reaffirmed something I already knew (but often need a reminder of); our kids ARE capable.  Our kids CAN do things.  Our kids CAN HELP. It’s up to us to figure out how to utilize their skills to allow them to do it!  It really was an amazing time.  Even with the slight tension of knowing that we might have to sleep on the picnic table outside (yeah, right….not with Joe!).  It all came out ok.  We were all ok.  Afterward, Ryan seemed (maybe it’s just me that saw it this way) to have a renewed sense of himself.  He enjoyed the rest of his time and even gave me a little hug before he left.  It was priceless.

Traveling through 19 states and visiting numerous families also affected by Fragile X syndrome is most often a challenge, even for the most experienced traveler.  It has provided so many opportunities for me to use my much-loved analytical and experimental self.  My pseudo-Cindi if you will.  

Taking Jake and Joe out of their comfort zone always requires a lot of planning on my part, but new places AND new people…super challenge.  People they have never met before, tons of small children, as well as unheard of traffic (Boston) and noises that we’ve never really had to adjust to (boats/ships)….a real experiment.  What I found though, is that they are really going to do their best if we follow some consistent methods.  I still used many of the same picture symbols to prepare their schedules.  I had the best luck using familiar and predictable wording.  It also seemed much calmer when we avoided the “unsaid” stuff. 

For example, when we ate out at a restaurant with wonderful friends like Melissa and Eric Welin, and Kathleen Quinn and Dennis Hazelwood, we were going to a “DDD” spot in Boston.  The layout was completely unknown to me; the environment was foreign so I could not provide much of a plan.  But, it was a restaurant in the mind of Jake and Joe.  We had also looked online at the menu ahead of time, so we knew they would have some of the boys’ favorite foods.  We stuck to those facts.  I printed a quick (Yes, we have a printer in “Rocket”!  It comes in very handy!) picture of the people from Facebook (don’t you love FB?) so we could talk about who would be there.  All of these elements really helped make the evening at the Boston Burger Company really special.

The same goes for when we had the opportunity to visit Joe, Leslie and Nick Garera in their lovely home.  We prepared based solely on what we DID know, leaving out the unknowns.  The boys did wonderful!  In fact, before leaving, Nick claimed they were “his boys”.  What a compliment!

There were several times where we had the opportunity to test the idea of entertaining right at “Rocket”.  We had a wonderful evening with The Butler family in PA, and the Zeleznik family in IL.  We also had the unique experience of hosting 5 families in MA.  Joe, especially, reminded us that he has always been better at coming to others rather than them coming to him.  So, we practiced doing it that way.  Nothing is ALWAYS the rule, or perfect, but in general, this philosophy worked like a charm!   So, whenever someone came to us to visit, we greeted them outside and waited for Joe to come to the door to ask them in.  I found that if I gave him visual and verbal notice ahead of time that someone was coming, also helped.

We have had the opportunity to travel many miles in “Rocket” over the years and have enjoyed many “DDD” ("Diners, Drive-ins & Dives" is a Foodnetwork program) spots as a result.  So, we know that checking them out online ahead of time is the best idea.  Some of the yummy food we see while we watch the show, is not something Joe would ever eat, so we peruse the menu.  It was no different when we went to a non-“DDD” called Zingerman’s Roadhouse with our friends Mary Beth Langan and Ted Coutlish.  It did not matter that it was not a “DDD”, although we really think it should be! Everything was delicious and we had a fantastic evening in MI!

There were several times that we saw the amazing adversity in Jake and Joe.  They were able to really initiate a conversation with others.  When we went to another “DDD” spot in NJ, 10th Avenue Burrito, with the awesome Fasciano family, we followed the same tried-and-true method of a “known” visual schedule and photo of them.  Having the Fasciano boys, who are 12 and 15, there, really brought out the best in our own boys.  They enjoyed just hanging together and we even managed to get a photo of the 4 boys together.  Everyone was able to hang out a few minutes in the RV afterward, which all of the boys enjoyed.

We had 4 days of just family time during our stay in the Pittsburgh, PA, area.  We visited the much anticipated Pittsburgh Children’s Museum to see the Mister Rogers exhibits, as well as the Heinz Center, where they also have some Fred Rogers memorabilia.  It was nice to get these “high interest” visits over early in the trip to help the anticipation factor, but one thing I learned this time around was to save a few small surprises for the end.  I didn’t do a good job of that, but will make note for next time.  It might help prolong the fun a little bit longer rather than it just be about getting home.

Being exposed to many children, both young and around the same age, opened up our boys’ world to a higher level of tolerance.  They are not around young children very often, and this gave them a chance to learn and us a chance to observe.  We made sure to provide breaks whenever needed and allow them to withdraw at will.  This made it a successful visit.

For me, personally, I was allowed to further my own mission to help other families, during this trip.  One way that I was able to do that is by presenting our story in a presentation affectionately called, “Mrs. Rogers Neighborhood”.  I had the honor of giving that presentation in both the Lancaster, PA, and Sioux City, IA areas.  It gives me a great sense of peace when I can meet other families and tell how proud we are of our boys and their successes.  After the PA mini-conference, I had the privilege of spending some time with 3 other really great Mom’s.  We chatted and shared stories.  It was a nice evening of friends, food and fellowship. 

Following the full-day conference in Sioux City, expertly organized by Tim Geels and his lovely wife Jammie, Nancy Carlson and Brenda Slama, our whole family, along with several others shared experiences and sat together for hours at a potluck dinner, laughing and eating.  The demands were high on all of the kids with the noise, new environment and sheer numbers of people.  All of the kids did wonderfully.

As with all trips we go on, the FOOD was amazing.  We cannot even discuss a trip without talking about the tasty vittles from each place we visit!  From the Cronuts (donuts made from croissants, OMG) hand- delivered by Paula Fasciano, to the delicious and beautiful cupcakes brought by Amy Zeleznik, to the baskets and bags of local goodies thoughtfully provided by Ruth Butler and the Sioux City group, to the scrumptious pie that Leslie Garera served… was all amazing!  We had to make a 2nd visit to a few of our favorites like DeNic’s in Philadelphia, and Primanti Brothers in Pittsburgh!  Nom nom.  We love the idea of eating our way through our wonderful country!  My waistline isn’t so fond, but it’s vacation!!!

I am constantly reminding myself of how many of these people I would have never had the privilege of knowing had it not been for the Fragile X diagnosis.  In the early years, we were not at all enthusiastic about such a prospect, but now…..our lives have been greatly enriched.  I know I am a lucky person.  I have had great support from professionals throughout our boys’ lives, as well as personal support from many friends.  One unique group of friends that I lean on pretty heavily is a group of ladies that calls themselves, The Birches, named after the ever-strong, ever-bending Birch Tree.  The very intimate, personal chats from Melissa Welin, Holly Roos, Kathleen Quinn, Amy Zeleznik, Mary Beth Langan, Paula Fasciano, Talitha Humphrey and Karen Kelm, have been invaluable.  The support we provide each other is also invaluable.  It is my hope that each and every Mom and Dad faced with life challenges will have strong support; if for nothing else but an ear to listen or a shoulder to cry on.  I am thankful for the Birches.

As we reflect on this awesome journey, we will always talk about the incredible growth we continue to see in Jake and Joe.  This trip was quite a test!  They passed, in our minds, with flying colors!  It’s been a long road, but I would not trade our fate for anything.