Sunday, November 25, 2012

Nothing is Perfect! Not Even Vacations!

You would think that a vacation, any vacation, would be something to look forward to, and we would not dispute this. But, when you own your own business and travel with two young men with Fragile X, it’s a bit like taking an Atlantic Sea Turtle out of the Atlantic Ocean and relocating it to the Pacific Ocean. They still carry their house on their back, but the scenery is different. There are lots of unfamiliar creatures and landmarks, but “going through the motions” is the same. We have learned to acclimate this way in our own lives. It hasn’t come naturally, but we have done it as a means of survival.

Neither Chris nor I experienced vacations like most families. My family vacations usually revolved around work or cars (which in my dad’s world were pretty much the same thing). For anyone who tried to make it fun, the word “vacation” usually brought on groans of dismay from the peanut gallery. Chris’s family would spend a lot of time talking about going on vacations, places they would visit, but never really did. Needless to say, we had a lot to learn about how vacations work once we decided to start taking some of our own, but we were willing to take on the challenge!

Our friends will tell you that there are no other couples quite like us. Our rituals and the motions of our daily life bend and sway as necessary to conform to its requirements. We are extremely methodical in our planning of everything, and a vacation is no different. When our boys were young, we were not so successful at pulling off the sort of vacation that most people had. The fact of the matter was that if we hadn’t been determined to learn, our boys would have been fully content to stay home day after day, week after week, year after year. This was not an option. (See blog dated 11-29-11 or 6-14-11 for previously unsuccessful vacations and more information on background). One way or another, we were going to figure out how to make it work.

The planning of a vacation for us always involves our RV (nicknamed Rocket), and almost always starts months—sometimes even a year—ahead. Spontaneity does not live in our house. We begin each planning session in a backwards way compared to most people. First we decide on the outcome we want, and then we back into the journey, planning each step. What do I mean by that? Well, for example, we might decide that we will go to Disneyland and that we want the boys to have a successful (and hopefully fun) time. Then, we figure out what each step will be to get there. Well, for this trip to Texas, that wasn’t an easy feat.

Why Texas? Well, some years ago, we became enamored with the Food Network program called “Diners, Drive-ins, and Dives” (some MIGHT say obsessed). By this time, Jake and Joe were getting their bearings on protocol for eating out. They were also expressing some pretty strong opinions about preferred foods. This opened a huge door of possibilities for vacations! At home we don’t make a habit of eating out very often. In fact, our rule is generally, once a week. And surprise! It’s even on the calendar. Using this method makes it very easy to set expectations for the boys while providing that familiar level of comfort and routine.

Since there is no Disneyland in Texas, we had to create opportunities for motivating, fun things to do. With each trip (we have taken a few...seeing a mere 46 of the lower 48 states of the U.S.) we have had the clear advantage of having a familiar way to travel: Rocket. For our boys, this is a way to check one “need” off of the list. . Reminding myself of the 3 elements that make up a successful experience for our FX boys: 1. Person 2. Task 3. Environment. Also, keeping in mind the things that MUST be communicated to them in order to make any experience successful, they need to know the following: 1. What am I doing? 2. How long will it last? 3. When will I be done? 4. What’s next? So, we need only focus on the people and the tasks and communicate it somehow. As usual, I make up a general calendar of the days of the month giving them and idea of where we will be. I print it out and put it in a sheet protector and hang it on the fridge in the RV. Next, I use their daily schedule (see blog dated 5-23-11 for more specific info on this) filling in the general items that they need to know to give a sense of what we will be doing using picture symbols. I also bring along all of the other picture symbols I will need to fill in days that are unusual or different. So, we need only focus on the people and the tasks. On day one, as is often the case, our day is spent simply driving to get to a destination. In the case of Texas, it’s two days. Texas is a HUGE state! We do make a point of taking lots of breaks and stopping to stretch our legs so no one (including the driver) gets too tired or has to cross their legs too long. First destination: Austin.

We arrived in Austin late—it is after all a 500-mile journey! If you’ve never spent time in an RV, you would have no idea what I’m talking about, but if you have… DOES take a few minutes of “waiting” to get set up enough so that the boys can move freely. As we do this, I realize how far they have come in this element. Miles! Our first camper wasn’t so bad in the “wait department” on the inside (the outside was A LOT of work compared to Rocket), but now each slide-out requires standing fairly still while we wait for it to go all the way out. Fortunately, over the years we’ve also honed our visual schedule to reflect this waiting and all of the steps that have to be “done” before we are officially set up. As is the case in many situations where one is short on time….we order pizza. Can I just say that I really think that two hours waiting for a pizza is a bit ridiculous? Thank goodness the boys were content to be moving around after driving all day. They didn’t even complain!

Austin is proof central that we CAN be the determining factor between having either a successful or an unsuccessful journey. We have learned that it is almost always a better idea to take the time to prepare the boys rather than not. Whenever we plan to deviate from the routine, we must implement our “survival plan.” This includes taking backpacks almost everywhere, filled with earphones (for the noisy environment), DVD player (since we have not graduated to the iPad—probably never will), and other diversions that the guys can access themselves when needed. If you have a younger child, I encourage you to dream about this scenario! It is possible! So, we venture out and really push the envelope, hitting three “DDD” places in one day! Now this takes a concerted effort!

We hit “DDD” place #1 for a late lunch (the visual schedule is ALWAYS with us). We have learned to go well-prepared to anywhere there is a possibility of waiting. The Monument Café in Georgetown was superb. The service, food and atmosphere are a sure “Do-Over!” Both boys were very content and did very well. We decided that since we were so full we could pop after lunch, and because we were already in the north side of town (where two other “DDD” spots were) we should plan for the rest of the day. We first stopped by Round Rock Donuts (already a “Do-over”) to get breakfast for day three, then we proceeded to Salt Lick for a take-out dinner for later. Joe had reached his limit of enthusiasm by then, so Jake was my voluntary helper. He wanted to go into each spot and help me order and, as he is so good at, hauling out the “loot” from #2 and #3. We returned to Rocket for a leisurely and relaxing evening.

One other major thing that we’ve learned to do when we travel is to keep the routine as much as possible. One big part of this is the boys’ sleep routine. Even when we are traveling we try very hard to conform to this one thing. It involves turning off all of the lights at about 6:30 p.m., watching Jeopardy then Wheel of Fortune, while the boys are covered with their weighted blankets, each weighing 35 lbs. Then we read or watch a quiet movie until they are ready for bed. Often times we will enjoy a small snack and will always take their medications. It may seem like a small thing, but it has had HUGE outcomes.

The next day was not such a rush but we stayed the course. For “DDD” #4, the Magnolia Café was a funky little place that obviously must serve awesome food because it was BUSY! We lucked out and got a table right away. Little surprises are not wasted on us. The earphones and diversions obviously have become routine for Joe, as he independently migrates to them without any behaviors whatsoever. We decided that #4 was enough for this stop and we relaxed the afternoon away. As evening approached, Chris and I spent a reflective moment being proud…so very proud. The fact that even five years ago neither of the boys would have given us the gift of two successful days of indulging in our own obsessions was crystal clear.

Our next stop was San Antonio. We did quite a bit of preparing ahead of time for this stop. Our pace did not slow down one bit, which meant that we had to be “on our game” for the boys’sake. As our friend Tina says, “It really is up to us parents to be the ones to prepare, otherwise we set our kids up for failure.” So true. As I reflect on this, I realize that a pace such as that in Austin and in San Antonio, we must be vigilant. With all this preparation, it has become clear that the boys CAN do most anything! We attended the Fragile X Awareness walk on Saturday (1.4 miles), we mingled with the crowd there, we had company, we visited the home of friends and shared a meal, we went to several malls, we drove at least 300 miles around the city, we ate out many times, and through it all they endured. To make it even more fun, we visited Sea World (results were clearly 80% better than the 1st time we visited), and even had a group luncheon at a restaurant. The time we spent with other families in San Antonio was absolutely fabulous! Making sure the boys were prepared made it all super fun and a great memory! Had we not prepared them or ourselves, the outcome could have been totally different….but it wasn’t. J Learning to cope and self-regulate have been invaluable lessons. We chalked up three more “DDD” spots, including one that required a 30-minute wait! Woo hoo, go us!

To be honest….I do not think we would have even attempted this trip five years ago. The thought of it even now still gives me anxiety. The fact that we were not prepared makes the idea that the boys would not have been prepared even more haunting. Looking back, I constantly wish that I had known then what I know now. I DID know it, but I did not know HOW to do it completely. We were still learning.

Next stop…Corpus Christi. We had never been to Corpus, but we love a visit to the beach. Unfortunately, as we approached, the weather was quite overcast and cloudy. Not the sort of thing one likes to see at the beach! Because we had never been there before, we chose an RV park based on information obtained on the internet. Sometimes this is really good; other times, not so good. When one owns a B.A.R.V. (Big A** RV, a.k.a. Rocket), one must be cautious as to the spot one chooses to park! Hoy. It was a bit of a challenge getting Rocket into her spot, but we did it. Not such good news for the bushes we had to navigate. After a few minutes of setting up and getting settled, we had a chance to look around. We have seen some interesting things in our years of travel. This was no exception. We realized that the box truck parked next to us was inhabited by a couple that obviously lived in there. We gave thanks for all of our blessings. They were very nice people! Over the many years we have been so fortunate to meet some of the nicest people you’d ever want to know in RV parks around the country. For Corpus Christi overall, we would say, “Park, not so nice. People, awesome.” The weather continued to be gloomy, and the forecast was without improvement. Our future destinations also did not look good. We had to make a decision.

We decided that this might be our opportunity to visit Fredericksburg, TX! I had always heard that it was a quaint town worth a visit. So, we changed our itinerary altogether and chose to head toward the West and ultimately Arizona. Our families live in AZ, but we decided that we would refrain from telling them we were coming and surprise them. It’s not often that we do something spontaneous for reasons previously noted. This plan was certainly doable.

The one question we would most like to ask as it relates to traveling in a B.A.R.V. is, “Who programs the information in GPSs, and have they EVER driven a B.A.R.V? If not, this should be a requirement!” Over the years, we have learned NOT to trust everything a GPS tells us. Since we purchased a new RV this year, we thought maybe we could trust it. NOT! Before we left, we thought it would be neat to load a celebrity voice on it, so we chose Bert & Ernie from Sesame Street. We’ve all thoroughly enjoyed this discovery. During our visit and departure from Fredericksburg, not so much.

We called ahead to the RV park and the gentleman proceeded to give us brief directions to the park. I didn’t write them down, but I remembered his giving us a specific street to follow. Bert & Ernie directed us off of the main road onto a side street that turned out to be a residential neighborhood! We traveled two locks on this and then returned to the main road where we started out! Who would have thought that the hill country of Texas would have so many trees? Well, eventually we made it safely to the RV park, sans nerves, and got settled. It was a cute town.

As we prepared to head out of town and toward I-10, we remembered our mistrust of the GPS system. It wanted us to go on the main street through the center of town to reach the highway! Not! So, we decided that we would return the same way we came! This would have required a short diversion of only 18 miles or so. Made perfect sense until we missed our turn. Bert & Ernie were not happy and they repeatedly asked us to “Turn around at the next opportunity.” Not an easy task on a two-lane country road in a B.A.R.V. Then we noticed that there we no more of the big churches we had previously passed, providing large, roomy parking lots. Only ornate, decorated gates that announced their entrance into grand Texas ranches. Not enough room to turn around a car, much less Rocket!!! Finally, after about 8 miles, Bert & Ernie recognized a road on our path and asked us to “turn right.” We obliged. Hoy. Now we were on a one-lane road to who-knows-where in a B.A.R.V. with a Suburban hooked to the back, with no chance of backing up! There was a sign leading us to a winery. In my mind, this was the perfect diversion! Now was the time that I was wishing we had one of the GPS representatives on board with us! Bert & Ernie requested that we “continue on this road” for 30 miles. We had no choice. We also had no idea where this road would lead us. Everything was tense to say the least, until……we approached a power line that was in our line of vision, obviously below the roofline of the RV. It swung at a diagonal angle to the road, so we drove ever so slowly toward the other end as the power line took an upward path. It also required that we veer a bit off of the crowned one-lane road into the dirt. We never knew that the hill country of Texas has so many LARGE OAK TREES! We made it. Once again, sans nerves. I “suggested” that we may want to knock on a door and get more information on the road and where it led. Ladies, you know what any man’s response here would be. This time was no different. We drove on. After 35 miles, and almost an hour from departure, we reached a road that finally took us to I-10 and in a westward direction. Only 450 miles left to go before we stop for the day!

We reached our destination for a one-night stopover. We got set up and somewhat settled in. About 30 minutes later, we realized that the docking power to the RV was not working! So glad we had not completely settled our nerves! After three tries to neighboring docking power, we finally got connected. El Paso, TX, will not be a destination for future stops. Duly noted.

After another long day’s drive, we reached our destination in Arizona. Before we went to the campground, we decided to try something totally new….A semi-truck car wash!!! We had seen these before, but had never tried one. We will be doing that again!!! Joe sat in the passenger’s seat while 6 guys washed “Rocket” and cleaned off all of the bugs from the windshield! He was waving and saying “Hi Guys” the entire time, all while we did a task that needed done!

Afterward, we got settled into our favorite RV park, where the people are so nice and the amenities are great. Jake especially loves the hot tub. The park is convenient, as it is only about 2 miles from my family. The sun was shining brightly with no clouds in the sky. Normally, we Skype with my parents on Sundays, and it happened to be a Sunday. I called my Dad and informed him that there would be no Skype, but gave the address to the RV park and requested they come. Dinner was already waiting. We all had big hugs and enjoyed the surprise. The boys were very happy too, especially Jake. One of his favorite things to do is to “Boo Pa,” and this was his opportunity. This is Jake’s way of engaging whomever he is happy to see by simply “booing” them (think Halloween—also one of his favorite times). Grandpa reacted appropriately by acting scared followed by a laugh. It was a good day.

Visiting family allows me time to hone skills that the boys have as well. For example, when we visited my parents at their house for the first time on this trip, I replayed a video of a previous visit (conveniently loaded on the desktop of my laptop) to remind the boys of what they need to know. See blog dated 11-29-11 for full details of this. It also reminds me to be sure, no matter what, to use their visual schedule. We had a nice dinner at Chili’s restaurant one evening with the whole family. Even though the boys had been there before and had done the exact same routine, there is no telling where their hyperarousal is for this day compared to previous visits. I’ll take a 100% positive outcome with preparation over an 80% successful unprepared trip anytime. Since I came prepared with the picture symbols I needed, it took me a mere 5 minutes to get it ready.

Even in the absence of “DDD” spots we enjoyed a wonderful five days in Arizona with family. It was much less demanding on the boys (all of them). Even Lulu, our dog, was enjoying basking in the sun. We took time to just relax, to enjoy the company of family and the absence of demands. The boys went swimming in the middle of November! All in all, it was a great vacation with lots of adventure and lots of fun times.

Three and one-half weeks, I believe is a threshold for the boys. Though they had fun, and enjoyed lots of time free of demands, I could see that they would be happy to be home. Joe stole my phone one evening during our last days on the road. He somehow communicated that he wanted to see a picture e of his mentor, Daniel, from Facebook. I obliged. He would not give me back my phone the entire evening! He had such a huge smile on his face while he looked at that photo. Jake was also giving us signs that he wanted to be home and back to the routine. Mostly, talking about “booing”our neighbors and best friends, Phil and Doris.

As we headed home, we reminded ourselves that no matter how many times we go on a vacation in Rocket, not one of them is perfect. What is perfect is the time we have together and the GOOD times we experience as a result. I remind Chris that one day we will look back and laugh at our experience in Fredericksburg. He says,“No time too soon.”

Monday, November 19, 2012

Counting My Blessings...and They Are Many

I admit it….I am like most people.  I do not give thanks for all of my blessing near enough.  In keeping with my own individual style, I prefer to list them all at once, so here goes (in no real particular order)…

1. Thankful for my Husband who really is a Saint. He puts up with me every day, can cook his own meals, do his own laundry or any other task bestowed upon him. Our journey and every step of it has been taken together. HUGE BLESSING!

2. I am thankful for my first born, Jake. He has taught me to adjust my expectations and always remember to dream big.

3. I am thankful for Joe, for without him I would not have learned to laugh out loud or to practice patience daily.

4. I am so thankful to have my health and hope to continue to take good care of it.

5. I am thankful for “Rocket” our RV. This luxury has given us a freedom that we would not otherwise have to enjoy sights we would never hope to see with 2 Fragile X boys.

6. I am thankful that we have our own business that is prosperous enough to provide us with the things that we need, and often with things we want.

7. Thankful for excellent customers that keep our business running.

8. I am thankful for our home and all of the safety and comforts that it provides.

9. Thankful for all of my family even though we are not close in proximity, they are close in our hearts.

10. I am thankful for the MANY friends that I and we have. Their support and friendship has been unmatched and invaluable.

11. I am thankful for many small things in life like cold drinks, hot showers, crushed ice, straws, toilet paper and other conveniences that we often take for granted.

12. I am thankful to have enough money to live the quality of life we have. Though we are not millionaires, we have enough.

13. I am thankful to live in the beauty of Colorado with all its splendor.

14. I am thankful to live in the United States where there are freedoms far beyond what the rest of the world could dream of.

15. I am so thankful for the gift of support and fellowship that we receive from the Fragile X Community. During our journey, this has been an invaluable gift.

16. I am thankful for technology and the things it has allowed our boys and us to do. 

17. I know I already said I am thankful for my family, but my sister and Mom have been especially important to me. I am thankful for their love and support every day.

18. I am thankful to live in a country where we have a government of the people, even though I may disagree with it about 50% of the time, we have liberty like no other country in the world.

19. The weather is a big thing that we are continuously thankful for. We live in a state where we can enjoy extreme cold, extreme hot, and everything in between. We have never suffered a huge natural disaster and for that I am thankful.

20. It may seem silly, but I am thankful for clean water, fairly clean air and an environment that we can thrive in.

21. I am thankful for the many resources available for our boys. Even though they can often seem lacking, I am reminded that many countries have nothing. 

22. I am thankful for the food we eat, be it too much at times. We can obtain almost anything our heart desires and this in itself is a blessing.

23. I am thankful for the people that serve as Angels to us and our boys (you know who you are).

24. I am very thankful for my own ability to learn, to reason, to have judgment and to be able to make decisions on my own. I am also glad I have inner motivation and a tendency toward the analytical. It’s what makes me who I am!

25. I am thankful to have love. I am fortunate to have the love of my family and friends to surround me when I need it most.

26. I am so happy to have the ability to make choices in life. 

27. I am thankful to have and to have experienced happiness in life and to be able to celebrate it.

28. I am thankful to have the ability to give to others so that I can experience the joy in others.

29. I thankful daily that my boys are relatively healthy and my worries are few.

30. Most of all…I am thankful for life