Tuesday, June 14, 2011

The Importance of "Rocket"

Never in my life did I ever imagine that I would spend a time camping, or hanging out in the wilderness, but it's become a reality!  As a child I never went camping.  In fact, I spent very little time outdoors.  Except once with a friend from elementary school and her family.  I felt like a fish out of water that trip.

My husband, on the other hand, did spend a huge part of his childhood camping in the Colorado mountains.  His Mother did it, but didn't love it.  She would express her dislike of the many hours required to prepare everything for 2 silly days, only to come home and spend 2 more cleaning it all up.  What could be the draw?

When our boys were roughly 6 and 4 yrs. old, we attempted to gather all of the necessary materials for a "trial camping trip".  We only had a tent at the time, as well as multiple plastic boxes full of necessities, camp stove, cooler, sleeping bags, port-a-potty (which we put in a separate tent to help the boys be comfortable), fishing poles and all the gear, and many, many other things.  It was a ceremony getting ready.  On most weekends the boys ventured out....but, one weekend Mom went along.  It rained most of the weekend.  We camped on a slight hill and attempted to make the most of it.  Not!  Remember the phrase, "If Mom ain't happy, ain't nobody happy!"  This was the scene.

That same Fall we decided to keep the boys out of school and rent our first RV.  We planned a trip across Colorado, into Utah and back.  You cannot even imagine how much stuff we packed into this 32' Class C Motorhome.  It was phenomenal!  We started down the road with dogs in tow.  We packed the boys' favorite foods, their own pillows and blankets, favorite toys and audio casettes with recordings of their favorite tv shows on them (that's all there was back then).  It was so exciting!  The campgrounds were not crowded at all, and the peaceful wilderness was a nice break.  We cooked our own meals in the beautiful forests of Colorado, and the vast openess of Utah. 

On about the 10th morning, the boys awoke at their normal dark hour--about 5:00 a.m.  We heard a rustling of the covers and knew they were awake.  Hoping they would settle back down and allow for the sun to rise, we stayed very still...listening.  Jake sat up and suddenly in the darkness, without any other prompt, and said "I.....eeeeyyyyeeee, HI!"  He was 6 years old at the time, and this was very clearly his first word!  We were so stunned we gave up the idea of peaceful slumber, rushed to him and gave him a huge hug!  What a moment.  We still remember this as clearly as it was yesterday.  We attribute this miracle to the opportunities that had been provided.  Noiseless environments for days, routine for days and comfort of all involved (and a bit of a relaxed tone from everybody).  We were determined to come up with a way to provide more opportunities for this same scenario.

The goal was set.  We wanted to own some kind of camper that was affordable, safe and provided only what we needed.  Our parents lived in Arizona at the time, which is a wonderful place to shop for any kind of RV.  We gave the order to Dad, including budget.  Soon after we received pictures of a possible tow-behind camper with bunk beds, queen bed, kitchen and living room.  It was 11 years old, and not fancy at all.  The picture did not accurately portray the fact that the dog-gone thing was a mere 35'!  We sent the money on ahead and planned a trip to pick it up.  When we arrived to tow it home the reality was very clear!  Yikes!  It was a monster!  It was in good shape and fit our budget.  We pulled it home, cleaned it up and made plans for the following summer's adventures.  It was a really good thing that we had this "trial" camper for our first.  Not only did we use the heck out of it, we towed it over a rock (tore off the plumbing) by accident, drug the back bumper on the ground ("it hangs so low--it's not my fault"), and discovered a leaky roof during a heavy rain storm.  We came to the conclusion that we deserved a newer model since we felt we would reallly use it.

That next Spring we researched what type of unit we could afford and what we really needed to be able to provide adventures for our boys and ourselves.  It had become quite clear that the only way we would see America would be by car or road.  Having an RV gave the boys what they needed, while Mom and Dad got what they wanted!  We wrote the check and took home a brand new 29' camper with bunk beds, queen bed, living area and kitchen.  It was a beauty.  That summer was filled with weekend adventures as well as our first trip to Florida.  We covered a total of 13 States that summer and loved every minute of it.  We learned how to pack, how to travel, and most of all, how to travel with 2 Fragile X boys.  It was glorious!  We owned that camper for 3 years until we had a desire to upgrade to something a little easier to travel long distances.

We spent an entire year researching the type of unit we'd like to upgrade to.  Ultimately we decided on a Super C Class that is powered by a diesel engine.  We obtained it in the Spring of 2007 and drove it home.  Within one week, we were off to the east coast for a fantastic adventure.  This trip included visits to Mister Rogers Neighborhood museum in Pittsburgh, Sesame Place in PA, as well as many, many others.  We were hooked!  The boys did wonderfully.  It didn't take long for us to discover the other possible advantages to having such a versatile vehicle.  That next Spring we discovered the first.

Over time, we had been witness to the ability of "Rocket" (as we call her) to provide a quiet, familiar place even when we were surrounded by chaos.  Each of the boys found it to be decompressing as well as stressless, providing a nice break from anything else.  When they were little we had used an indoor tent enclosure, and the effects were similar.  We could provide a "homebase" to retreat back to during the day if needed, then continue to seek out new adventures.  Basketball had been an activity that both boys had participated in for several years back home.  One difficulty for Joe was that when we had the basketball tournament, he would really suffer.  The emmense amount of people, noises and activity was just overwhelming for him.  We had tried retreating to the car the past year, but it didn't solve the challenge.  We decided to take Rocket and have a "tailgate" party during the next tournament.  The outcome was absolutely amazing!  Having that first summer to become familiar with Rocket helped, as well as giving Joe the option of retreating after each game (there were a total of 3).  We offered other kids the opportunity to "retreat" with us, and it became a social magnet.  We recognized the fact that "Rocket" had become a transition piece. 

The next challenge was even bigger.  We worked for months to help Joe be prepared for a life dream--to walk graduation with his peers at the huge stadium.  We made a plan months ahead, and practiced it many times.  We began at the stadium by himself, with no music, nothing.  We borrowed a cap and gown and hung it in his room for months, only mentioning it briefly.  We approached the entire process as a planned building of tolerance.  Each time we went through it, I video taped it so that we could watch it prior to the next visit.  This helped Joe prepare mentally, although we still provided a visual schedule giving the steps.  On the 2nd visit to the stadium, we asked that the ceremonial music be played; on the 3rd visit, we brought along other kids, played the music and practiced the actual "walk"; on the 4th visit he finally wore the cap and gown, heard the music, practiced the walk with other kids and any one else clapped.  He was ready.  The only thing we had not practiced was a contingency plan.  I asked the staff at the stadium if there might be a special place we could park "Rocket" near the back entrance--just in case.  We were granted a spot. 

On the day of graduation, we had a visual schedule all prepared, which included waiting in "Rocket" before the ceremony, all of the other steps we'd already practiced, and retreating to "Rocket" just after..........we never needed it as a contingency.  Joe walked the entire ceremony exactly as it was supposed to be, received his diploma, sat with his friends, and his smile beamed every single minute.  After he was finished, he retreated to "Rocket", we drove home and he was ready for his celebratory party.  It was a spectacular day!  We never dreamed that an RV would play such an important role in our quality of life.



Since that glorious day at graduation, we've come up with many other ways we can use "Rocket", including trips to the Dr.  We've been granted a parking spot near the office and the Dr. has been able to visit us in our familiar environment.  We have been able to overcome many other challenges as well.....all in the name of "Rocket".

5 comments:

  1. I might need to borrow Rocket next May for Josh! I am so hoping we can get him prepared enough to graduate. His high school is huge -- over 1700 kids, and the ceremony is usually in very large venues downtown in Kansas City, Missouri, which of course I won't have access to ahead of time like I would the stadium at the school. I'm sure we'll work through it somehow.

    Meantime, Cindi, I know I've said this before, but thank you for sharing so much. I can just imagine the number of Moms you've helped along the way. I enjoy hearing all about your adventures with the boys. Can't wait to see you in August!

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  2. That is super! Maybe one day we will get one! I love hearing about all of these things you have done and are doing. It is such an encouragement..i love that you share the pieces that didn't work, and how you came to discover the things that did. That gives me so much hope and helps me not feel so alone when i fail, knowing that a resolution to any given situation is there- it just takes determination and patience to get to the answer! Thanks Cindi! love jessica

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  3. Even though my son is much younger (2 1/2) I can share a similar story of accomplishment. Sam attends daycare and every day he and his classmates walk around his school's campus holding onto a rope while they take a stroll. Sam does't stay on the rope like his peers. He drops it often and will sit down and fuss throughout the walk. His teacher is so patient and wonderful. She never gives up on him. After learning of the power of video, I taped about two minutes of the walk one day. You can see the video here: http://www.youtube.com/watch?v=z-XGVtTE2Ac. I started showing Sam this video each day, and he loves to watch it. Now when they go on a walk, he does wonderful so now I use the video approach when we struggles with a task like kicking a ball. He has shown no interest in kicking a ball, but I know it is an important balance and gross motor skill he needs to master. So, I filmed his classmate kicking a ball correctly, and I play this video for him often. The other day, he kicked a ball around the house for 5 minutes....the same ball he has owned for a year and ignored. Now he likes to kick balls much more than before, and I truly believe he likes it now because of the video. Your "Rocket" story is a wonderful example of putting into place the right tools, environment and preparation will help our children not only survive but thrive. Thanks!!!

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  4. Love it!! My kids love our old '85 camp trailer. It is well loved/used! I love that your share such awesome ideas! Thank you so much for your educational experience!

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  5. Hi there! I'm a newbie to your blog (found you on the fx Facebook page). I'm sure I'll be a regular. I've been reading many of your posts and am in awe at all you've accomplished. Thanks. - Heather, mom of 11 year old Thomas who has fx, in Utah

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