Tuesday, November 29, 2011

"Rocket" on Vacation

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.

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.

Thursday, October 13, 2011

"The Only Thing We Have to Fear is Fear Itself"

In the early years, a simple visit to the doctors office would have devastating effects.  We would go to simply have a well check, or immunization and it would turn in to a long-lasting emotional mark.  One meltdown that included tears, physical altercations and embarrassment for me would cause me to have fear so real that I would resort to being isolated in the house for at least 2 days.  I would go through the motions of meeting the boys' every need, but they knew it was different.  My lingering tears might have been the first clue.  They were like Bloodhounds--smelling fear up to 2 miles away.  These early years I will call, "Isolation".  The effects of this situation would make me want to avoid going to the grocery store with the boys, or even to get gas in the car.  In fact, my husband and I still feel as though there is a void in our memory of these years, but unwillingly I can pull up the crumbs if I wish to.  I felt personally responsible and like a failure.  Why was this happening to me?

As time passed, we still had meltdowns, but I was able to sit back a little bit rather than giving a knee-jerk reaction.  It wasn't always productive, but sometimes it was.  By this time we had implemented a sensory diet, but we were still very much in the learning stages when it came to knowing what the "triggers" were or how to be more proactive.  I call this my "observation" years.  For example, when we tried Special Olympics skiing.  Jake loved it and moved into a routine very quickly.  Joe--not so much.  We tried a different strategy each week to no avail.  The one thing I learned from this (if there had to be a lesson) is to consider what the priority of an activity is.  For skiing, we decided it was not a life skill that had to be loved.  The same goes for Joe's disdane for Halloween.  It's not important to us that he love Halloween.  On the other hand, doctors visits needed to be a part of life, and it would help a lot if they were successful.  I had no intention of spending my life suffering through a routine task.  I wanted no part of ongoing bite marks on my arms or bloody scratches everywhere else.  This had to be mastered.

I decided that a trip to Disney World was also something we needed to find a way to enjoy.  The boys have always loved Disney and probably always will.  Our first trip was a logistical nightmare.  We had no idea that Joe woudl have a severe aversion to riding on the boat that we had to take to get from the campground to Magic Kingdom.  Because we were on vacation, I did not have the luxury of "sitting out" for 2 days.  It would not be fair.  We made some immediate adjustments to get through it.  This and other necessary experiences gave me a way to view situations in a more productive way when I was able to analyze the need for doing it.  So, we had one bad visit.  Is this something we will or need to do again?  If so, I had to figure out how to make it successful.  In the case of Disney World, I had one tool that I didn't even know I had---photos of happy moments.  These will be saved and recorded for future visits, even though it may be years in between. 

One other huge lesson I've learned about analyzing negative situations to the point of making them positive, is how to regulate myself.  As I said, these boys can smell fear 2 miles away!  If I go into a situation with a preconcieved notion about what might happen based on what happened before, it's bound to lead to a negative experience.  I realize now that there are things in the world that I cannot control.  Those can lead to a negative reaction for the boys.....BUT, if I envision a positive experience and prepare them the way I know works, then I've done all I can.  The outcome is not predetermined.

I also learned to relax a bit more (trust me--this took time).  A call from the school saying, that "there was a toileting accident today", did not throw me into a panic.  Often times, it will have been a one-time occurrence.  If a situation was ongoing, and I could see that it was problematic, I took action.  I would gather the facts around it (especially if it was happening at school where I was not there), take some time to analyze it and ask for help from professionals if needed.  Often times it was needed.  Having a neutral party involved helped me to see clearly what was happening and what could be done about it.  These people are still very involved in our lives and have helped tremendously (you know who you are).  I was also able to relax when the High School teacher called me and said, "As you know, it is our policy to contact parents when inappropriate behavior occurs.....("uh huh", I said)...."Today, Joe touched a girl on the butt.  Now....before you go off on me, just know I HAD to call you.....(long pause) It's not like he didn't have a few role models......so consider yourself called" (click).  I had to laugh.  This was not a situation that required my intervention. 

So, as far as doctors visits go, we are still working on a full successful experience, but it's about 80% better.  We have implemented a routine where we attempt to use an automated blood pressure monitor once a month.  We all sit down and take our blood pressure as a family.  Is it perfect?--no.  Are we trying?--yes.  This will take time.  This past Christmas we spent time at Disney Land with a very successful visit.  Was it crowded?--yes.  Were there things we could not predict?--yes.  Did we make it positive?--absolutely.  We were able to use photos from Disney World (it doesn't matter to them where--it's the subject matter that is most important) as a model for what would happen and where we would be. 

I believe these opportunities for improvement will always be there for me.  I actually hope they are.  One of them is to help teach others how to live with and handle the boys day-to-day.  For example, at this very moment, Joe is exhibiting a bit of hyperarousal by stomping his feet.  Does it require my intervention?  Maybe.  Can't he see that I am busy anyway?  Teaching others to know what the boys thresholds are, and how to intervene will be a long-term and ongoing process until we are out of the picture.  I welcome the challenge and the chance to continually learn my own fear threshold.

Saturday, September 10, 2011

Today Was the Best Day Ever!

For one to understand why today was such a good day, I must begin the story about 10 years ago. 

Living in Colorado, skiing is a normal way of life for many families.  Ok, so "let's try it!" Our journey with sports had begun.  We drove 2 hours one-way every Saturday for weeks to participate in the Special Olympics Ski Program.  Jake loved it!  Joe, not so much.  We tried.  We thought about just having Jake participate, but then decided it would be better to stay together as a family.

A few years later, when Jake was in 9th Grade, the High School had an amazing unified basketball team (unified means that "typical" peers assist).  The league was started by a wonderful man that lead the team at this high school.  Every year they had a tournament that was sponsored by the fraternity at the state university.  We signed Jake up.  It's not like he came to us and said "Mom, I want to play basketball!"  We just thought he might gain some gross motor skills, and have some fun too.  We took him to every practice and he really caught on.  The other players ranged from experienced to beginner-level like Jake.  The difficulty came when we had to bring Joe along in order to watch Jake.

We situated ourselves on the bleachers with plenty of space on either side.  During the first game, the applause and cheers of encouragement were suprisingly loud!  Boom!  Joe smacks me one!  He comes at me in an effort to give me a firm bite.  Yikes!  Should we attempt to remove him?  We did.  Even though I had prepared a visual schedule, it was not enough.  I felt crushed.

The following week, I prepared a more defined visual schedule giving Joe specific information about what would be required of him (little).  We brought snacks, his earphones and a PSP with movies on it.  We entered the gym (although it was in a different school the 2nd week) and the number of people already in the gym was huge!  Bam!  Didn't even get in the door and Joe was already suffering from uncontrollable anxiety.  This was something we could not have anticipated.

For 2 years we tweeked this scenario, the methods and the approach.  Some weeks of the basketball season were successful (we made it through) and others, not so much.  Eventually, Joe built up a level of tolerance that allowed him to take part.  The influencing factors such as noise, environment, crowd, length of the game, lighting, Joe's mood and other issues had to be considered.  We did eveything we could to allow Jake to play, but required that Joe come along.  We sought professional advice, gave additional OT all day on game day, and tried to remain as calm as we possibly could.  As we approached the end of the 2nd year, we noticed Joe was more alert and able to tolerate input.  We saw a little bit of comfort between he and the coach, so we asked the coach if he would just give Joe a "high 5" after the game.  Joe did it!  Finally!

By the time we got to season 3, Joe was in 9th grade and  a new team had formed at Joe's new High School.  We moved Jake over so they could play on the same team.  Joe loved the coach and knew the other kids well by then.  He knew the environment and the people, and by now (from watching Jake for 2 years) he had a grasp of what the game was about.  The transition from watching to playing was pretty smooth!

To make a long story short, both have played for years and have loved it!  The companionship, the increase in motor skills, the routine, the sportsmanship and the overall growth of the boys has made all of the work and energy we put into it well worth it.  They look forward to the beginning of the basketball season each year.  We felt a sense of success having survived the challenges of basketball, therefore, we had not actively pursued any other sports.  The boys were happy and productive and seemed to like basketball. 

On September 10, 2011, a close friend of the boys invited to watch her play on a special softball team.  We had been camping with her family, so it made it easy to transition to watch her game, although I had no time to prepare in advance.  I had no visuals prepared, so I had to attempt to use verbal prompts, using as many familiar words as possible.  I told them we would "go with "K" and sit and watch her play ball, then we would get in the car and go back to "Rocket" (our RV) at the campground".  We got ourselves ready, got in the car and headed to the field. 

It didn't hurt that the field was in the grounds of their old school.  We waited a few minutes in the car, at which time the coach came over and talked to the friends' Mother.  Joe gave the Coach a "high 5".   We got out of the car and headed to the bleachers.  We sat down together to wait for "K"'s turn to play.  The time came.  She got up to go to the dugout.  Joe followed.  Hmmmm....that's good, I thought. 

One of the helpers was passing out little packaged snacks to the kids.  Joe took one and sat next to his friend.  He looked very relaxed.  No anxiety whatsoever.  "K" asked Joe if he wanted a helmet.  He took it and put it right on!  Then there were a selection of mitts.  "K"s Mom took the queue (which she is great at) and just started trying different ones on him.  Joe favored a catchers mitt.  He even had it on the wrong hand.  They moved to a grassy area and started to play a little bit of catch.  Joe had never really been interested in this, so it was great to see!  I watched from afar as I sat with Jake in the stands.  Their team was in the outfield first.  Joe followed one of the cute peer team members (female of course) to the outfield.  He had on his mitt, his helmet and a huge smile.  I could not believe my eyes.  I snapped a few pictures in my disbelief.  He had never even played before!

Soon, it was their turn to hit.  They called Joe's name.  The Coach knew he was new, so they set up the Tee for him.  Joe proceeded to homebase.  They pitched the ball and he hit it!  I felt elated!!!  The peer team member modeled the running to base and he followed to first base.  The next hitter came up and hit a good ball.  Joe ran all the way home!  It all happened so fast, I didn't have time to think about how it happened. 

Joe returned to the dugout and stood for a few minutes.  I could see that he was happy, but a little stressed.  I moved in and asked if he wanted a "break".  He agreed.  We returned to the bleachers.  From past experience I knew the key to today's success would be to end on a positive note.  Joe sat down, put on his earphones, turned on his ipod, and relaxed.  I told him how very proud I was of him and how proud Dad would be.  We sat and watched a few of his teammates as they played.  Several minutes passed.  I could sense that the heat of the sun and the excitement of the past moments were still present in him.  I asked if he would like to go to the car.  He said, "Yes".  We calmly proceeded to the car.  About 3 minutes later, the game was over and we returned to "Rocket" as promised. 

The contrast in the experience of today and that of years' past is so clear to me.  To get to this place where Joe is able to tolerate new things, and to enjoy them would have been unimagineable all those years ago.  The fact that we need to do it in measured doses does not matter to me.  Only his happiness and success in life is important.  Today was a great example of his growth and we are proud.  Most of all, Joe is proud of himself.  We plan to go next week, although I will have visuals prepared.  I only wish I had had the video camera on my person!

Thursday, August 25, 2011

A Trip Down Memory Lane

Yesterday I experienced something unexpected.  I decided to go through all of our old VHS-C home movies so that I could decide which ones to keep and convert into a digital format.  First of all, I didn't even have the adapter anymore, so I had to run to Best Buy to get one.  Finally, I was able to sit down and begin to watch.  I was hoping to see some classic signs of Fragile X that I could use in future presentations to show "then" and "now".

I chose one from 1990 as the first one to view.  This meant that Jake was 16 months old, and just beginning to walk.  Joe was not even a glimmer yet.  The first thing I noticed when I started to watch was how different I felt than when I watched it years ago.  I also noticed many things that I never noticed before.  It became evident that as the years past I was able to look at things in a very different light.  I could clearly see that Jake walked with a very different gait than other kids I have seen since.  His joints were very loose.  I had been told this, but I guess I didn't notice it that much when he was little.  I started to feel a bit strange in my stomach as I viewed this video.  I was able to remember exactly how I felt at that moment the video was shot.  In 1990 we knew nothing about or had ever even heard of Fragile X.  I also noticed that he WAS a very cute little boy.  Of course, I am biased. 

The next video I choose was from 1993.  It was Christmas morning.  The room was lit soley with the light from the Christmas tree, but Jake (then almost 4) immediately walked over and switched on the lamp.  He had just gotten up.  Next, he went and turned on the tv, just as he did every morning.  The routine could not possibly be interrupted--even for such a thing as presents!  Joe, on the other hand, immediately went toward the gifts.  He was walking well at 20 months and his balance was pretty good.  My 80's hairdo gave me the creeps.  We sat on the floor and slowly opened one gift at a time.  Jake continued to be uninterested.  As I watched, I remembered feeling very numb at the time.  In fact, when I just think freely, I don't remember a lot of details about this time in my life, but,  I do remember feeling overwhelmed and numb.  At the time, it seemed like both boys were a handful, but now when I view it, it seemed the exact opposite.  Another sign that as time passes you form a new perspective.  One other big thing that I noticed, was how quiet everything was, even with over an hour of video.  The boys hardly said a word or made any noise at all.  Another sign of reality.  I realized now that in a normal video of a 4-year old there would be lots of chatter, excitement and noises--especially on Christmas morning!  Fragile X was alive and well in our home.

I did feel a little bit sad while I watched.  I didn't like it at all.  This is not me!  It was almost like I was transported back in time and had to relive the emotions of the past.  I had faced all of these emotions before.  I had resolved them and moved past, but here I was facing them point-blank once again.  If I had the option, I would choose not to do it again.  So, I had to ask myself...do I keep these videos at all?  I think I will, if for nothing more than to record time.  I believe it is a good reminder of how far we've come.  It is also a good reminder of dreams and how limited they are.  When the boys were this little, we never could have imagined them coming as far as they have!  How could we?  We could hardly see past the end of our noses.  We were spending each and every day coping the best we could.  We were full of worry.  So much worry that we had no room for dreams or goals.  We couldn't see past next week!  I know we loved them just as much, but we had been stirred up and dumped out by life.  Our ability to see age 20 and 22 was impossible.

Watching 2 videos was enough to know that I didn't really care to watch anymore.  I choose to be in the place I am today.  To be able to view the future with hope and dreams.  To know that goals are attainable, and that our boys CAN and WILL succeed in having a productive and happy life.  As they say in "Lion King", "Oh yes, the past can hurt. But the way I see it, you can either run from it, or... learn from it".  I choose to learn from it.

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".

Monday, May 23, 2011

The "Why" Behind a Picture Schedule

Summertime was the key behind creating a successful picture schedule for me.  During this time of year, the boys were home from school for at least 4 weeks without any day camp or other program.  This allowed me the time and control necessary to create a picture schedule that worked!

I began creating a picture schedule for Jake and Joe when I finally moved from "reactive" to "proactive" mode.  When they were little it was so natural to feel like I needed to just be there to provide whatever they needed at any given moment.  Whether it was food, changing, a hug or drying of tears, I provided it on the spot.  As the boys got older, I got more worn out.  I felt I needed to be able to have some "control" in the way the day played out!  I thought about this a long time before I actually did one single thing about it. 

After having a professional assessment done it was determined that anxiety was the culprit behind many of the behaviors we were seeing at home.  Many of the behaviors manifested themselves as crying, biting, temper tantrums, toileting accidents, upset stomach, throwing things, general refusal to comply and many, many others.  After assessing different situations, it was clear that the boys really just wanted to know what was going on!  As I learned more about strategies I began to memorize the "magic 3" (as I call it).  These are the 3 most important things that come into play when I developed any schedule.  The boys want to know:

-What am I doing?
-How long will it last?
-What's next?

Subsequent to that learning, I also realized that they needed to know "When am I done?"  So, I went to work developing a simple daily schedule for a typical summer day.  I wanted to start with something that we could use unchanged for at least one week.  This required me to be as structured as I expected the schedule to be.  We stayed at home for one whole week, but made it fun at home.  We stuck with the schedule so that they knew they could trust it to be true.  The first week looked something like this:



Each morning I would verbally go over the days schedule pointing to each item.  As the day progressed I would revisit the schedule and talk about what was next.  Even if the boys weren't looking directly at me or the schedule, I would continue to do it.  It's amazing what they hear, but don't see!  They were paying attention!  This week of routine allowed me to judge their acceptance of the schedule as well as gauge their behavior.  Having a very structured routine really played like a "baseline" so that I was able to see improvement in behavior each and every day. 
 
The second week I was able to modify one element, but stick to the rest of the day.  I added something that they also liked, such as an ice cream treat in the afternoon.  With every passing day I saw a calm and relaxed environment all around me.  It wasn't like they didn't show some disapproval, for example, when I would attempt to brush their teeth, but I knew this was due to a sensory issue that would need to be addressed separately.  The anxiety surrounding the day's schedule was gone, but not the other behaviors not related to anxiety.  We still had hand-flapping, overstimulation during tv time and dislike of food during meal time.  These were not related to what I was trying to achieve.  I kept telling myself "one thing at a time!"  This exercise in routine was a good lesson for me as well as the boys.  It showed me that this method can work!  It showed the boys that they can trust me to provide what they really needed.
 
As time has gone by, we have continued to stick firmly to using a schedule every single day.  We even use a schedule when we travel.  It's become a staple in our home and our life.  I realized at one point that I needed to be able to change or rearrange the schedule as needed with the changes in life.  The boys really trust this system now, so I am able to do just about anything.  I found it easier to use a modifyable system that I created called the "all done" method.  This new format required me to work with the boys for a long, long time in order for it to work the way I envisioned it to.  I wanted them to be able to use the schedule independently by moving the scheduled item to the "all done" column in order to "prompt" themselves to move to the next item.  Each morning I "set up" the schedule for the day and they know what to do!  It has literally taken 12 years, but the boys are able to move through their day independently.  That has exceeded my expectations by light years!  Here is what the morning and afternoon schedules look like.
 

AM  Schedule
 
 

PM Schedule
 
The photo quality is not the best, but hopefully it shows the method and most of the steps. These schedules hang in the hallway of our home outside of the bathroom and bedrooms. This was it can be accessed at all times, and it's convenient for me to set up and change.


Don't be afraid to try something.  I have tweeked each and every schedule I've tried based on the response that I get.  Sometimes it helps to have more detail, sometimes it helps to have less detail.  It just depends on the circumstance.  No matter what, I am so glad I tried it and so glad it worked! 

Wednesday, March 23, 2011

The Importance of Social Stories

When my boys were young, I wondered day-to-day how I would survive.  The behaviors, personal care, constant patience required and emotional toll were overwhelming!  I knew I would need to be proactive in coming up with a strategy to save myself.  Some of the daily challenges were simple things like bathing, going to the grocery store or visiting Grandma and Grandpa.  How could I made these simple things more manageable?

I had heard about the fact that kids with Fragile X Syndrome need 3 things:  They want to know WHAT they are doing?  How long will it last?  And what is next?  Subsequently, I also learned that they want to know WHEN they are finished.  How could I incorporate this methodology into their everyday lives?  I had also heard about Social Stories from our therapists (experts in the field of Fragile X).  Social stories tell the viewer in pictures what's going to happen, what they'll be doing or where they will be, and what's next. 

My boys were already familiar with a few pictures from a software program called Boardmaker, so I would use that to create it.  I decided to start the first social story with something that did not require any demands on the boys' part.  A trip to the grocery store would be perfect.  I would begin by showing a picture of home (something safe), then move to the picture of the car (they liked riding in the car so this was not threatening), then show a live picture of the grocery store (obtained from the internet).  I would then use a picture of a grocery cart, then food, then pay, then finish with a picture of home.  I realized that doing this first one was also an exercise in building trust.  I wanted the boys to trust this scenario to be "true" and be accurate.  I also wanted the whole experience to be semi-quick and successful.  This left open the door for future visits to grow and be possible.  Here is a picture of what that social story might look like.

As you can see, I started with a pictue of home so that that was a "known" element.  I also ended with home because that was safe and predictable.  After I finished, it became clear to me that what I was doing was reducing anxiety about this situation.  So, my approach when we went through this social story verbally (before we left for the store) was to use the very same words everytime I went through it.  We took off in the car and I reiterated the steps we would go through.  I also mentioned "we are already in the car.....", etc.  Half way through the store, I went through it again, just saying, "ok, we left home, we went in the car, we got in the cart, we're getting our food, THEN we will pay, then we will be all done, we'll get in the car, and then we go home".  This was the best 15 minute trip to the store ever!  I did not go to the store to get the shopping done--I went to do this experiment and dedicate time to it.  It was a successful trip.  When we got home, I laminated this social story so that it could be used again and again.  Whenever I use it, I use the exact same words in exactly the same order so that it's predictable and non-anxiety enducing.

I now have hundreds of social stories.  My boys are now 20 and 22, and are very used to this method of communication between me, my husband and them.  Later on in their lives, I realized the power of this kind of method and I developed another method.  This one is call "All Done", and it is specifically used when there is involvement from them necessary.  I've used that one to teach them everything from how to unload the dishwasher to how to work at their jobs.  I plan to update this blog to explain that method in the near future, so keep watch!!! 

Take a chance and start your own social story regime.  Let me know how it goes for you!

Wednesday, March 2, 2011

All the Talk About Food

Since our boys were very young, we raised them the only way we knew how.  Constantly telling them, "No", "Don't do that", etc.  It only seemed natural to continue to tell them what they could not do.  Everyone in their life was constantly telling them what they could not do.  I can only imagine how frustrating that must have been.  As we received our diagnosis of Fragile X Syndrome, and as they got older and it became clear that they wanted some control, so we tried to switch our way of thinking

A big change in all of our lives came when we decided to switch to telling them what they COULD do!  One daily point of frustration was FOOD!  We continuously monitored what they ate, how they ate, what time they ate.  We thought about locking the refrigerator so that only we had access.  We had already stored many of the snack reserves in a locked room.  We could see that this was no way to encourage independence.  We asked ourselves, "How could we manage what they eat and still give them some control?"  After much thought, and some intense consultation with the experts (more on them to come), we came up with an idea.  We would need to be consistent with this idea, and most of all, patient.  We might have to tweek it a bit, depending on the boys' response. 

The boys had already been using picture symbols derived from a software program called Boardmaker, so we had a communcation method in place.  We decided to tap into that and develop a space.  There would be a space in the refrigerator (we designated 2 shelves in the door of the refrigerator), and a place in a cabinet where each of their pictures showed their "special place".  Each morning we would "set up" all of the snacks (in the cabinet), or cold items (drinks, yogurt, etc.) that they were allowed to choose from for the entire day. 


We practiced for weeks telling them that "this is your special spot for Jake's snacks", or "these are your choices".  When they were gone, there was nothing until the meal.  There were tears, stomping, a bit of hitting, and overall displeasure, at first.  We stood firm.  We continued to repeat the same phrases.  We switched out types of snacks to gauge satisfaction.  Some included apples, dried fruits, gummie bears, Gold fish, chips, dried cereal, crackers and others.  We made sure that each day there was one of their favorite things to continue to motivate and keep it interesting.  Amazingly, they always went to their spots!  There was less distraction and pillaging through.  In the first week, they usually ate the majority of items very quickly.  After a while, they learned self-control, and self-regulation.  This took months.

This is just one example of how giving back control of something can affect overall behavior and environment.  With proper supports in place, and a sense of patience unseen in our history, we prevailed!  We have been able to assign the task of "setting up" for the day to someone else.  This is a big dose of satisfaction for us since our overall goal is for our boys "to be as happy and as independent as they can possibly be".

Sunday, February 27, 2011

The Beginning

After many years of grieving, my husband and I arrived at "Acceptance" (what we call "Reality"). The boys were getting bigger and the behaviors seemed to be increasing. We knew we had to do something. If for nothing else but survival. We determined that our overall goal was not behavior-based, but one of independence. We wrote our goal; For the boys to be as happy and as independent as they could possibly be. As we moved forward, we kept that goal in mind in all that we did. It really helped to keep things in perspective.
The first issue we had to tackle, at the time, was school. Jake was about 11 or 12 at the time. He was not at all motivated by school or the things that he spent his time doing. The school wanted to talk about putting him on a behavior plan. We didn't want that. We had heard that this meant that things were really based on a "consequence" system. We knew Jake well. He was the kind of kid that reacted well to reward rather than consequence. That's the direction we would move. We developed a step-by-step plan that would lay out the exact expectation, and a simple reward.

We decided that if Jake could get through the day without crying, kicking or hitting, and have nice hands, that this was a start. He loved food. We made the first day's reward a food item that he loved. We practiced this for several days (it seems like it was weeks). We saw the potential for this lesson to expand into other things, and we did not want him using food as a reward forever. At the time, this was something that was very comforting to him, so it worked in the beginning. We continued with weekly meetings with the school so that we could pow-wow on how the progress was coming. Jake seemed very proud when he brought home the "board" with his food reward. I made sure that he immediately received the reward in order to make thewhole experience a successful one.

Step 2 happened after a sleepless night....we could see that there was a potential for him to learn what money was and to earn it as a reward. Up to this point, Jake did not even know what money was. So, before we could move to money, we decided that he needed to learn to earn his reward by being successful at each period during his school day. We cut the food picture into 6 pieces and he would earn each piece during the day until the entire picture was complete. We continued this for several days.


Step 3 was born out of the same expectation and concept for reward, but we would use a dollar. The very first day, Jake earned a one-piece dollar for the entire day. He brought the board home, I gave him a real dollar, we loaded into the car and drove to Taco Bell (his favorite place), he gave the lady a dollar and he received a taco! Voila! Success! He understood the concept that dollars bought things. He knew that he earned the dollar and that in itself was motivating. We continued this for 5 days.

Step 4 was now easy. We cut the dollar into 6 pieces, he would earn a piece for each successful period during his school day, and bring it home. We had come full circle. All of the school staff agreed that Jake was more cooperative at school. We hadn't had one behavioral incident at all during this time. We continued this for the rest of the school year. During that time, we decided to ask Jake what he would like for his reward ("prize") and he would tell us. We decided that in the beginning we could extent his wait time to a $5 prize, and each Friday he would get a small token prize. As time has passed (he's 22 years old now), Jake is able to work for money, save it up and buy a specific prize. He's even been able to save $50 for a vacation to Disney World. We went to the bank and got 50 $1 bills and took them with us so that he could keep track of his money.

This was our first successful strategy. We have learned that this kind of method gives both of our boys control, and a feeling of success. In addition, it has been transferrable to the job setting where they are both motivated to earn money.