I have blogged before about our boys’ love of “Rocket”, our RV, several times. As we head home today after 3 weeks of vacation in “Rocket”, it’s only natural to think about how far the boys have come.
Many families I know have a weekend cabin or getaway spot on the beach. Some even rent a place each year as a tradition. As a child, we never had the means to do such a thing as take a vacation. Of course, we didn’t have 2 kids with Fragile X either.
When the boys were young we tried several different things in an effort to have some kind of vacation. We rented a cabin at a dude ranch in Colorado. We ended up going home after 3 days because Jake wouldn’t eat. The following year, we spent a wad of money taking the boys to a week-long therapy camp. It was helpful, but certainly not a vacation for anyone. After that, we were thrust into the world of camping. I wrote about our first camping adventure in an earlier blog.
We’ve really tried to make a priority of taking at least one journey in “Rocket” a year. This year, we decided to re-visit Texas, and then proceed to Arizona for Thanksgiving with the family. We spent the first 2 days just getting out of Colorado and into central Texas. We had been to Texas before, but it seems we missed a few places in our initial visit. We took the time to really take in the scenery this time, which in western Texas, is a bit boring to us coming from scenic Colorado.
From the time we departed, the boys were in their splendor. They each had their comforts of home, and their personal entertainment devices. I had carefully prepared their visual calendar to include “driving days”, “amusements”, and “visits” with various people. This helps keep them motivated and centered. Then, I brought along my library of PECS (picture exchange communication system) and “all done” board. Each day I prepared the program for the day.
We arrived in Austin early on the 3rd day, in time to have dinner at one of the “DDD” places on our wish list. I noticed right away that the weather was already so much milder than home. I liked that. The rolling hills and chirping birds were everywhere! One day we drove through town, and then finished off with a late lunch at another “DDD” barbeque joint. Another day, we ventured into downtown to see the Capital building and take a long walk in the beautiful park that surrounded it. Everything was already decorated for the holidays. One morning, we drove the 25 miles to visit a donut shop we had seen on tv. It was delicious! We even managed to pick out some tasty sausages at a Cajun Deli we had seen along the way. Those babies are in the freezer for sharing when we get home.
Next we headed south toward Galveston Island. We had been here once before, but since it was shortly after hurricane “Ike”, there were no campgrounds on the island. Most of that was rebuilt when we arrived this time. In fact, we were pleasantly surprised at the cleanliness and charm of the entire area. The anticipation of an impending lunch with another family also held my interest at its peak level! The first night, we drove several miles back across the island to the mainland area to eat at a “DDD” spot known for its steak. They had something to please every palate.
Before we got to the restaurant, I made my usual call to gauge the crowd or wait time. We like to eat early to avoid the crowd, and this time was no exception. We arrived at the restaurant completely prepared, with backpacks and diversion/wait devices. Joe was especially engaged because there was a young man that reminded him of a friend back home. It was cute to see him make this association. I am reminded of the many times when the boys were young, when they ate a restaurant meal in 15 minutes flat, and we left with boxes filled with our meals to take home. The boys would manage to eat theirs, but our time was spent getting them ready, making sure they were cleaned up, and then leaving. I am so proud that these days are gone. Both boys are able to wait a substantial amount of time for our meals.
The next day we had a special treat awaiting us. Facebook has been such a wonderful meeting place and outlet for me and many others. I became acquainted with a very nice Mom of 2 young boys that lived in the Galveston area. She invited us to have lunch with her family. We agreed to meet at a famous hamburger joint. I prepared the daily schedule as usual, including a symbol for “friends”, and “say hello to friends”. This should do it. We arrived at the restaurant without a hitch. We enjoyed a lovely meal and conversation. After lunch, we were treated to a local tour of the area, and then we ended up back at “Rocket” so the boys could all have some down time. I think everyone enjoyed themselves. I certainly did! It’s always a treat for me to meet new families and learn their story and their joys. It was really special to have a local family share their time with us.
We headed back north toward San Antonio. As we drove, I took in the whole environment. It is very relaxed, and quite predictable. Even though we are moving from place to place, there are many things that remain the same. The environment inside of “Rocket” is stable. The routine tasks we do every day are the same. The people and dogs are the same. I believe this has a huge effect on the comfort level and adaptability of Jake and Joe. It also attributes to the success of every visit. I think about what a blessing it is.
We had also been to San Antonio before, and really enjoyed it. We felt it was worthy of a second visit. There are many things to see in San Antonio. I was also looking forward to a special dinner with the families from the area. I knew several of them from Facebook, but looked forward to meeting some new friends. We spent the first few days visiting several “DDD” spots, as well as the Riverwalk, shopping and historic sites. The boys were very relaxed, which made sense due to the lack of demands on them. It was completely different from our home routine, and their work schedule. The level of hyperarousal was easily controlled. We still practice a routine of “up” and “down” times when we are on the road. We also stick closely to our sleep routine and allow for time zone changes with meals and medications. This makes transitions (there are many when we travel) to be very manageable. Having a home base in “Rocket” makes it all very easy too.
Before our dinner with families, I contacted the restaurant to check on menu items and crowd level. One of the ladies from the group had made a reservation, which was great. We arrived, and everyone said “Hello”, and sat down. It was a fun evening full of laughs, sharing and good food. It was a real treat for our entire family to have this kind of welcome. Chris especially enjoyed being able to talk with another Dad. It will be a special memory forever.
The next stop would be to see family in Arizona. Two long days of crossing west Texas and southern Arizona were quite boring. The result would be well worth is though. We arrived at our usual RV Park and got settled in. In preparation for dinner that night, I had the boys view a video I had taken of going into Grandma and Grandpa’s house, saying hello, then getting settled into their “spot”. There was literally no anxiety at all when watching the video. They’ve become very used to this method of preparation. I was glad to have it! We got to their house, the boys said hello (even gave hugs), went in and got settled. We followed this same routine for several days in a row, which made it so pleasant for the entire family. On about the 3rd day, we made a visit to my sister’s house. The boys had only been there once before. The visit was short, but successful. We had brought all of their personal devices and made sure there would be a “spot” for them. When we had the huge family get-together there on Thanksgiving Day, the comfort level was even more evident. It all went off without a hitch.
I often have to remind myself that a lot of hard work has gone into making the boys’ success a reality. Each methodical action that we’ve put into place is now routine for us. But, without them, we would quickly be reminded how important they are. Having a different routine when we travel is important. Having a schedule with us, no matter where we go is essential. Using technology whenever possible is a bonus. Having “Rocket” to guide us and help us stay grounded is everything.
Cindi Rogers is the Author of "Becoming Mrs. Rogers: Learning to Live the Fragile X Way". She blogs about her life with two sons diagnosed with fragile X syndrome.
Tuesday, November 29, 2011
Sunday, November 20, 2011
Is it the "Happiest Time of the Year"?
Define your best holiday experience.
If I gave this request to each of my friends, the response would most certainly be different for every single one. For me, the definition has changed from when I was little to where I am now.
When I was young it meant 2 full weeks with no school, playing in the snow, and the anticipation of presents. As I got older, it meant having a few days off work and lots of stress. Now that I am a parent myself, it means something totally different. I’m not sure what I thought it would look like, but I am sure I have modified my idea of that vision over time.
When our boys were little, we attempted to mold our Christmas holiday into what we thought would be the ultimate experience. All of our ideas were based on either what we ourselves experienced as a child, or the things we wanted to change about those memories. My husband’s memories of Christmas were very happy ones filled with day-long celebrations and family. Not that every moment was fun-filled, but his overall memories of childhood Christmases were pleasant. For me, not so much. I wanted my own family so I could have the fairy tale. Of course, it isn’t realistic to think that we really could have the fairy tale, but it was a dream. Society’s idea of a fairy tale Christmas was riddled with debt, stress and overwhelm. I never thought about those facts….I just knew I wanted it.
As toddlers, the boys received many gifts—more than should really be allowed in any household filled with humans. We tried to follow all of the “rules” when it came to the dinner, the decorations and the family time. We were well on our way to learning about how to throw a fairy tale holiday celebration. Once we were consumed with the knowledge of having 2 boys affected with Fragile X Syndrome, all of this changed.
Our first few Christmases with the boys were spent attempting to mold them into our ideas. Joe was not an easy baby, so most of the day was used to try and appease him. Jake was content with spending his time doing his normal routine. In fact, the home videos of this timeframe show the true picture. There was not a speck of joy or elation over new toys or clothes. In fact, just the opposite. But, we pressed on. My family had a tradition of celebrating on Christmas Eve, and because they live out of State, that meant a blow-by-blow account by telephone. Chris’ family, on the other hand, lived close by. We spent Christmas Day with them beginning in the wee hours of the morning through dinnertime. Conforming to all of the expectations was exhausting! Attempting to get a “thank you” out of a child that literally didn’t speak was a challenge. Teaching a child to give hugs when we spent multiple hours in OT in an effort to overcome sensory issues, was futile. Some things had to change!
A change would require a mind shift from me and Chris. This was going to be tough. To give up my perception of what Christmas should look like was a loss for me. I cried for my lost dream. For Chris to give up having the same memories he had as a kid, would be difficult too. Did we want to put our mark in the sand and continue to fight tooth and nail for our dreams? Or try to make it more of a positive thing for the boys? That was the question. I think we had to try the positive approach. How would we be able to set some kind of routine based on something we could only practice once a year? This would be a challenge.
The anxiety surrounding opening the presents was clear from the boys’ first Christmas. They never seemed interested or excited about this task. I decided to try a sort of “tolerance build-up” approach. I took a trip to the dollar store and bought 30 $1 nonsense things. They didn’t need to be of super high interest, but some interest would be good. Food items, small snacks, candy, slinkies (sensory), chewy things, etc., all hit the basket. I went home and wrapped each one and placed them in a box. Beginning on the 9th of December (15 days before Christmas Eve—don’t ask me how I came up with this) we asked the boys to pick one item from the box. We allowed them to wait until they were ready, and then open it. At first we didn’t make a big deal about it. After a few days, we started to use a “side dialogue” method to encourage imitation. This involves me and Chris talking to one another, saying the things we wanted them to mimic. We would say “Thanks, Dad” or “Thanks, Mom” and giving a “high 5”. I think we were starting to see improvement in the anxiety department over the simple task of opening the gifts. After about 10 days of practice, we were able to achieve the “high 5”, but still no “Thanks”, which was ok with us. By the time Christmas Eve arrived, there was little or no anxiety over gifts.
The following year, Chris and I decided to try and focus more on things the boys liked to do during the holiday rather than push our idea of it on them. Jake was always very frightened by the Christmas tree itself. I think the sensation of the tree’s texture gave him an extreme aversion. Therefore, he never wanted to help place the decorations on the tree. Joe is so sensitive to everything around him, that the whole radiation of stress from everyone caused him to become a seasonal monster. On numerous occasions we would hear things from the school like “oh, well, we won’t plan to start any new materials or approaches until after the holidays”, or “let’s plan to get to that in January”. No wonder Joe was feeling this stress—it was all around him! His own home was no exception. Both boys did seem fascinated by the numerous displays of lights that appeared everywhere this time of year. We could see that this was a constant interest area. Even the lights on the tree seemed interesting, even though we didn’t want to touch them. That seemed to be our ticket!
We had noticed a list of lights displays published in the newspaper every year, so we looked that up. We planned our path and prepared our trip. At dark on Christmas Eve we packed a thermos of hot cocoa, cups, Christmas CDs, blankets and a few diversions. We all dressed in our pajamas and loaded ourselves into the car. We traveled around the city taking in all of the spectacular lights. The evening was a success. We headed home and tucked the boys into their beds in preparation for a busy Christmas Day.
Another obstacle that we faced the following year was the constant invitations from family to attend parties. Up to this point, we had not had the best experiences. Chris was from a very large family and there was a lot of demand. Most were not extremely knowledgeable about Fragile X, and we didn’t see them often enough to really keep them in the loop. We decided to have a pot-luck party at our house, on the boys’ turf. Somewhere in the neighborhood of 50 people came. There were lots of kids, lots of noise, and lots of food (lots of smells). Overall, it went pretty well. No one cared if Joe ran around his house with no shirt on—it was his house. No one cared if the boys cried for some reason—we didn’t either. We had all we needed right at our fingertips. We learned what to do and what not to do the following year. Because we felt like it was important to include family in the boys’ lives, we made it an annual event for many years to come. As the family dwindled, we transitioned to an annual party for friends, which has become an event that we look forward to with anticipation (all of us). The boys’ are involved in the countdown and the preparations.
As the years have passed by, and our boys have grown older and more tolerant, things have greatly improved. We have created our own way of “Living the Fragile X Lifestyle” at Christmastime. We all enjoy taking our Christmas Eve carriage ride downtown to view the spectacular city lights displays. We don’t have as much family nearby, so it’s a fairly quiet evening. We still open gifts from my family and share the experience by telephone. We begin Christmas morning by opening gifts at a leisurely pace with no pressure. We continue to practice using good manners with each one. We share a specially prepared Christmas dinner with a few friends and family. The boys’ even enjoy eating “a special dinner” in the dining room, with cloth napkins placed on their laps. We’ve learned that a few high interest gift items are much more meaningful to them than the number of things they open. I have also realized that this time of year marks time for us. What I mean is that each year we sit back and say things like “Oh, remember when Jake was only as tall as the table”, or “remember when they wouldn’t even sit with us at the dining table”. It’s a time for reminiscing and for reflecting on how far we’ve come.
Now I know that when I mourned the loss of my dream, I was really mourning was the loss of society’s dream. My own dream actually came to light. To see our boys enjoying and participating in what is meaningful to all of us, really does make it the happiest time of year.
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