A Little Melancholy

I never chose the Fragile X life….it chose me.  Today, as is the case in past years, when I return from an International Fragile X Conference, I often feel a bit melancholy.  There is so much time and preparation that goes into attending a conference, and then so much energy that continues to resonate afterwards.  This was my 10^th conference, and each time it has had new meaning.  One would think I would grow tired of the whole thing!

One of the most common questions I heard this time around was, “Do you still learn something when you come?”  Or, “What do you continue to get out of the conference?”  I know exactly how to answer.

Honestly, I do not even remember my first conference.  It was in Denver, Colorado, and there were a mere 100 or so people in attendance.  I was one of many in a daze.  I really had no idea what to expect, and I am not sure what I learned.  I do, however, remember some of the people that I met.  Few are still present today.  Conference #2 through 9 had a different meaning for me each time.  As my boys grew, so did my thirst for knowledge in different areas.  When they were young, I wanted to know what the future held for us as parents.  I also wanted to know how I could help my boys today.  I wanted to know how I could help make their life better and more productive.  I wanted to know how to help myself.  Little did I imagine that the friendships that I formed would become one of the most important things that I would take away.  The information I gained from the many experts has been invaluable (as you know if you saw “Mrs. Rogers’ Neighborhood”), and really could not be learned in a better setting.  Having every expert in one place at one time……priceless.

I made a personal decision to formulate a goal each time I decided to attend a conference.  This helped me feel like it had a purpose and was meaningful to me.  Whether it was networking, learning about adult issues, or toileting training, I set a goal.  During the early conferences there weren’t nearly as many attendees as there are now.  Fragile X Syndrome was just making its way onto the circuit.  I have many happy memories of early conferences and of the people that helped me through those times.  Some years ago, the National made a routine of incorporating young adults with Fragile X into the awards ceremony.  These presentations were heartwarming and always made the entire audience cry.  It also gave me so much hope.  I think hope is the one main thing that I have always come away with and I believe it’s become an addiction!  Now, it is my turn to provide hope to others that are just making their way down the Fragile X road. 

The St. Louis conference was really the first time that I had the courage to present “Mrs. Rogers’ Neighborhood” in its current form.  I spent many hours rehearsing it and preparing notes to tell the story of my boys.  I actually had taken several years off from conferencing and missed Washington, D.C., but that has all been worth it.  I needed that time.  I needed to focus on the one thing that is most important to me---my boys and their happiness.  The drive to help them become productive, happy members of our community is what really keeps me going every day.  But, it is the families of Fragile X that keep me coming to conferences. 

While I was in Miami this time, it warmed my heart to hear stories from other people about those early years.  During the banquet reception, one Dad came to me and told me a story I had long forgotten.  He reminded me of his families first conference when his 2 children were very young.  He said that he wanted to tell me how much comfort it gave him when we met one evening by the side of the pool.  His children were swimming and running all over the place, just as most kids do.  Evidently, I took his son and held him on my lap and calmed him while all along I appeared calm and collected.  It must have been one of my good days, because as I recall, it took me years to learn calm.  He said this still gives him and his wife a feeling that it will all be ok.  He said, “to see you in 1996 (5 years after our diagnosis) with such calm and contentment gave us such peace and hope for our future and the journey we were just embarking on”.  Their son is now an awesome young man that is very productive and happy.  This whole conversation and those like it are the things that keep me motivated to continue to come.  Or, another Mom that told me that “You hold the distinction for being my favorite memory of my first conference.”   It is my hope that I can mentor someone else to be there for those families that are just starting out.  I know I won’t want to do this forever….but for now, I am content.

So, my answer when I’m asked, “Do you still learn something when you come?”  Or, “What do you continue to get out of the conference?”  I can easily say that I always learn about the kindness of others, about the need for mentoring others and I always make new friends.  I have some awesome memories from those conferences and all I can say is….”What happens in Miami, stays in Miami!”  “That’s the life for me….”  In 2014, who knows what my goal will be????

It's All About the WHO

They say, “It’s who you know…..”.  In the scheme of things, it’s the, who, what, where when, why and how.  Anyone that knows me knows that I spend a great majority of my time focusing on the “WHAT” and “HOW”.  These elements are extremely important when you are raising 2 sons affected by Fragile X Syndrome and Autism.  We’ve developed ways and approaches for personal care, work tasks and recreation, among many others.  But, in reality, we’ve learned that it’s the “WHO” that really matters.

When the boys were born and later diagnosed, we were not blessed with the convenience of having family nearby to help us manage the day-to-day.  They’ve been outstanding morale support, but lived a 2-days drive away!  So, it was up to us to come up with ways to get a break without the boys in tow.  Many of our friends from school were still in college when we had our boys, or they were just starting out on their career path, so they could not possibly relate to our situation.  One of the many pluses for us was the fact that we lived in the same house for many years; therefore, we had a good knowledge of our neighbors.  One of the first real established relationships we gained was with a neighbor couple.  Their kids were older, but they had “been there” and understood the need for a break.  Little did we know how important these people would be in our life.

During our boys’ school years, there were also many “WHOs” that played an important role.  Some without the knowledge or acquaintance of the boys themselves.  In Jake’s (our oldest son’s) very early years, we became familiar with an important and very kind gentleman known as the School Advocate.  His love for kids with disabilities was generous and giving.  He helped us make decisions that we had no basis or knowledge of.  These decisions would shape the future years of our boys’ educational lives.

Throughout their lives, the boys received the hourly equivalent of years in service by doctors, therapists and teachers.  Looking back now, I can say that, if we had to be diagnosed with Fragile X, Denver was the perfect place to be.  This is not just “taking lemons and making lemonade”, but the truth when it comes to service providers.  Two very special individuals have molded and continue to mold and hone people throughout the world when it comes to Fragile X.  Tracy Stackhouse (world-class O.T.) and Sarah Scharfenaker (world-class Speech Pathologist), are one of the main reason I am still standing upright today.  Their ability to identify, assess, diagnose and treat any challenge is an understatement.  We still affectionately call them “our Fragile X Saviors”.  This is not a title I assign lightly.  To call them our friends is an honor.

Along about 3^rd grade, there was also a Special Education Teacher that shared her knowledge and expertise in an effort to really make a difference and allow Joe (our youngest) to thrive.  Thriving was not Joe’s strong suit in 3^rd grade, but he became a real participant in the community called school during her tenure.  It was a rare scene.

I remember clearly, another lady who made a subtle, but long-lasting impact on Jake’s life.  She was a paraprofessional when he was in 5^th grade.  She was able to see through his disability to his heart.  She understood his quirky sense of humor and his desire to participate even though he was not a communicator.  One day, she insisted on coming to the house, picking Jake up in her super cool convertible, and transporting him to his favorite place…..Taco Bell!  To this point, he had never been anywhere except school, without us.  He did so well, despite our inability to let go and allow him to practice these skills.  It was extremely scary to allow someone else to be in control during these years.  There were way too many uncertainties for us to even take that chance!  What if something happened during an outing?  What if someone didn’t know what to do or what Jake was saying???  We just could not take that chance to this point! 

Along the way there were countless other students that had kind hearts and gave their time to befriend our boys.  These are too many to name one-by-one.  One that deserves special mention is a young man named “DB”.  “DB” has a very strong family and a giving nature.  He started to mentor both of our boys when the opportunity came up for him to participate in Special Olympics basketball.  To date, he has been Jake’s personal basketball mentor for more than 5 years.  Even though Jake has to be coerced into playing and sticking with it, “DB” really hung in there.  Through his tutelage Jake has been able to go from a “participant” to actually making baskets!  He is very special to our family.

During Joe’s high school years, there were several, powerful, impactful forces that guided him.  These were so meaningful and personal for Joe, that it is difficult to describe them.  Joe was going through puberty and trying to learn “the ropes”, which made for a challenging and stressful Joe.  Having a teacher that understands the struggles you face each day, being able to shape those challenges into successes and then to adopt them in everyday life, is rare.  But, Joe was the lucky recipient.  His high school years were the real pillar in his development for adulthood.  Specifically, 2 individuals, made a huge difference.  One Special Teacher and one Special Paraprofessional were his Angels. 

During high school, both boys really started to come into their own and begin to develop work skills.  The people that took a forward-thinking approach to teaching and helping them to succeed still resonate today.  As Jake and Joe graduated and we saw the need to move on, we also had to figure out how to enroll others in that scenario.  This is a scary and very necessary detail.  It became very clear that for them to work and travel their community could not be done without some kind of supervision.  How would we incorporate this necessary element into something that was as meaningful as work?  It all came down to the “WHO”?

Chris and I often talk about another gentleman that made more of a difference than he will even know.  This guy was the one that cut and styled my hair for years.  As we approached a time when we knew we would have to eventually teach Jake to go to the Salon, he was our guy.  I asked him if he would be willing to work with me on teaching Jake the approach.  I use a 3-tiered approach that includes 1. Person 2. Task and 3. Environment.  He was the person and the task.  Jake would be familiar with the environment (home).  So, he agreed that he would be willing to come to our home each month to give Jake a haircut.  Little did he know that he would commit to doing it for 4 years!!!  Finally, Jake showed us that he was ready to move to the Salon.  He was familiar with the task now and the person, so that should be no big deal.  It wasn’t.  Today, Jake is able to go a completely different salon, have a different person (also a hero) give him a shampoo, cut his hair, and he pays all by himself.  THIS IS HUGE!!! 

In retrospect, we have been the luckiest people I know!  Good and kind people have been all around us for as long as I can remember.  One such person is a young lady I will call “A”.  “A” started working for us during summers about 5 years ago.  She was a high school graduate that wanted some extra income during her summers.  We needed a good care-giver, so the match was made. After 5 years, she has become such a crucial element in Jake’s life, no words could possibly describe it.  “A” has been there as a daily provider, confidant, and a good friend to Jake.  She guides him through the aspects of his day and does it all with grace.  She exhibits such a calm and persistence that no one else could.  No gift is greater than this.

As Joe finished high school and was ready to move on to “adult life”, we were lucky enough to utilize one of the paraprofessionals from school for the first summer.  He was one of the special forces that had taken a liking to Joe during these years, and that friendship continued.  Once Fall came, we had to breech the subject of a new person.  Through what I like to call fate, we were fortunate to find a young man that wanted to give working with folks with disabilities a try.  Oh, how fate is my friend.  We will call him “DM” for purposes of this blog.  “DM” is an amazing man that possesses the rare qualities of kindness, patience and coolness.  All of the traits that Joe adores.  It is a miracle that he entered our life, and continues to be a vital force. 

Having some time away from the boys when they were little was as critical as breathing.  No one can care for and oversee the care of 2 very involved, complicated kids and not get a break---at least and survive!  In a sense, we felt like there really was no one that could do the exact job that we did.  But, what we learned is that, we shouldn’t expect it.  When they were in school, life was somewhat easier to manage, and in turn, it was easier for someone else to take the helm.  Getting them ready for school, feeding them, clothing them….that could be transferred.  Get them on the bus, and then they are in school until late afternoon.  Get them a snack, dinner, bath and off to bed.  All doable.  But, it would require a special, patient person.  We had that in our neighbors.  They, more than once, took over and provided every essential need, and spoiled them to-boot!  We cannot possibly express our full gratitude for those years.

For the past 12 years, we have solely focused on the “what” and the “how”.  We’ve implemented life skills, a sensory diet including self-regulation, taught them how to take care of themselves, and how to be productive at a job.  The one thing we forgot, or, shall we say, neglected, was our own ability to get away.  This was not intentional, but merely a result of the situation being what it was.  Ok…..maybe the fear built up and up over those years and we became comfortable in the “not having a break” scenario.  What we realized was that the longer we allowed ourselves to NOT do it, or made excuses NOT to do it, the easier it became.  As with all things in my life, challenges must be overcome.  I knew HOW to do it, I just had to take the first step.  Initiation is not an easy task. 

Once we made a plan for the “WHERE” and “WHEN”, the decision on the “WHO” was fairly easy.  “A” has an amazing Mom we will call “C”.  “C” has helped us during the summertime before, too, and both of these ladies are simply friends of the family.  Even the best of friends probably didn’t know all of the details involved in caring for the boys during a full 24-hour period.  This we knew.  This we were realistic about.  The reality made it harder.  When the guys were young, it was just a matter of going through the motions to provide every need they had.  Now that they have become adults, the awareness and dignity have shifted.  We knew that “A” and “C” would be the perfect candidates for the task.  Once they agreed, we put the wheels in motion.  Thankfully, the “WHEN” was 5 months away.  Together, we formed a plan of action and implemented it.

Today, as I sit on a tropical beach writing this, I ask myself, “What price could possibly equal the value of these gifts we have received?”  Or, “How would our lives (all of us) be different without these people that have had such an impact?”  I cannot formulate an answer.  These are such grand gifts that they cannot be valued.  They cannot be measured with any human form of measure.  We are truly grateful and humbled by all of these people that have contributed to the life and well-being of our boys.  In all of the things that others consider important, I believe it’s the “WHO” that truly makes a difference in all aspects of our life.  Our family has grown exponentially and in a way that cannot be measured by simple means.  Except if you are counting……angels.

It's the Knowing

Today I grieve with and for a friend.  I knew her when she was single.  I knew her when she met, dated and fell in love with the man that is now her husband.  We shared the joy of her pregnancy and the birth of her precious, beautiful baby boy.  Now, we share the piece of genetic information that will change their lives.  It will change the way they see the past, present and future. This new information has thrust them into a world that was never even on their path of life.  Like a sharp swerve made on a road to avoid a car accident.  The smooth, comforting, safe path that their lives used to follow is forever gone.  Now, their life is occupied with support groups, treatments and interventions.  I wonder if they will ever ask themselves the question, "What if we had never known?"  Many families diagnosed with their sons fate never know until a situation occurs that exposes its ugly head.  It forces the old doors that I had long ago closed in my memory to fling wide open.

That faithful day back in 1991 when we received our diagnosis.  It forever changed how we view the past, present and future of ourselves, our children and our family.  It forced me to question the way I thought about myself.  It has tried my patience and my knowledge of all things that I held dear.  It has tried the sanctity of marriage to the end of its thresehold.  But, I have also learned. 

Often, I have learned more than I ever cared to learn.  I've learned about things that I never would have otherwise become an expert in.  I have obtained life-long friends that I never would have met in that "other world".  I have been humbled by the caring and kindness of others.  To me, it's like a precious gift that I have received.  A gift that was wrapped carefully in tissue and fitted with styrofoam like a fragile piece of art.  As I peer into the box I cannot see all of it and I am constantly discovering new facets of the gift.  I feel as if I am somehow priviledged and unique to have received it.  I feel special.  I show it to a stranger in the grocery store that quickly turns to me and says, "What is it???"  There is no way to really share the gift.  It's characteristics can only be learned by living with it.  It cannot be taught in a book.  I wonder if Dr. Randi Hagerman ever knew how this small piece of genetic information would change and shape our life when she revealed it?  Was I happy when I first got it?  No.  But, today I am thankful for knowing.

Getting Ready-Step 1

It can be really difficult for couples with children that have a disability to get away on their own.  That holds true for us too.  But....we have been the priviledged recipients of a 5-day all-expense-paid trip, therefore, we must rise to the occasion!  This is no light task!  Luckily, we knew about the trip well in advance--6 months to be exact.  This is good because it gives me time to gather my thoughts, analyze my worries (I'm very analytical) and to get prepared.  So, as with all things, I started with making some notes.  I decided to create an IEP just for me.  I am not a huge fan of the IEP process, but it helps me get my thoughts in order and to give myself a timeline for getting it done.  It also allows me to break down the process into smaller pieces.  I need that.

First, I decided that one of the funniest, but most important things we can do for ourselves is to take care of as much in advance so that we can avoid using all of our cell phone roaming minutes.  The destination is out of the country, therefore, it is bound to be quite expensive to use the cell phone.  Therefore, it must be avoided if at all possible.  We will use Skype once daily to check up on things and avoid the cost of minute-by-minute updates.  Good first goal.  I don't think it's necessary to give a timeline--only to know that this is a goal.  It's all in good humor anyway.

Secondly, in order to remain sane, we need to choose WHO will be caring for our boys while we are away.  This is really a big one and something that needs to be decided quickly!  We haven't taken a trip alone in over 10 years, and things are a lot different when it comes to the day-to-day care of the boys.  This includes the showering process, which fortunately, we have been working on for some years.  I may have to write a blog just on showering--someday.  We are very lucky to know 2 lovely ladies that have spent a significant amount of time with the boys, so we decide that is a perfect match.  Now to implement the actual schedule for care.  I decided that we needed 2 practice sessions before the big departure for the trip.  We had a meeting with our caregivers and they agreed.  Our first practice session would be an overnight session while the 2 of us attended a wedding in town.  We would stay at a hotel close by, but still stay away.  The second practice session would actually be while we are at home.  The reason we chose this method is so that we could be present while they practiced the schedule and all of its details.  The first time away would give them time to see what small things needed more work or answers.  As you know, if you've read any of my other blogs, a consistent schedule is highly important for our boys.  We have spent years of energy implementing it, and the boys have spent years learning to trust it. 

Step 1 in the overall process--So, for the first weekend away, here is how I began the process of developing a schedule:
First, I typed up a quick list of the steps that I thought would be used.  I based these on items the boys already know and use on a daily basis.  I needed to add a few more picture symbols for a few things that were new, like "Bye Mom and Dad" and "Hello Carol and Amanda".  These are based on what I know about the things our boys need to know.  This can be different for each child.  The level of detail is also based on their "thresehold" or how much they can manage to take in ahead of time.  Also, what is motivating to them.  Here is a quick glance at what my list looks like:

1. Wake up
2. Toilet
3. Breakfast
4. Pills
5. Get dressed
6. Computer/tv
7. Lunch
8. Shower
9. Get dressed
10. Bye mom and dad
11. Hello carol and Amanda
12. Computer/tv
13. Snack
14. Trade
15. Dinner
16. Jammies on
17. Tv/movie
18. Weighted blanket time
19. Fruit smoothie
20. Pills
21. Bed
22. Wake up
23. Toilet
24. Breakfast
25. Pills
26. Get Dressed
27. Computer/tv
28. Hello Mom and Dad
29. Bye Carol and Amanda
30. Lunch
31. Computer/tv
32. Trade
33. Set Table
34. Dinner
35. Shower
36. Weighted blanket time
37. Fruit Smoothie
38. Pills
39. Bed

 After I had the list, I gathered my supplies.  I always have a spare blank "All Done" sheet ready to go.  Here's what it looks like:

This sheet is legal sized and laminated with velcro strips (I use the scratchy part on the blanks) applied all the way across in a vertical pattern.  Hopefully, this photo demonstrates that clearly.

Next, I go through the picture symbols I already have in my library and start to fill them in where needed on the "All Done" method board.  It seems I will need to create a few new symbols in order to complete this schedule.  I go to my computer and I open my blank template in my software program called Boardmaker.  I have created this template so that I can simply "paste" the picture symbol into a defined square.  I use this sized square for almost all of my pic sims. 

After I paste my symbols into the squares I "save as" if I want to ever use this set of symbols again.  This also avoids saving over my blank template, which I use all the time for different reasons.  I probably would not save this one since it's pretty generic.  I print the page and here is what it would look like:

Next, I use 2 laminating sheets (I prefer the self adhesive type) and adhere one to the back of the sheet and one to the front.  Then, I cut out each square (I like to go a little bit outside of the line so that the lines are still visible but this is not necessary).  I turn over each square and adhere a velcro dot (I now use the soft side so it will stick to the scratchy side already on the "All Done" method).  Now I have all of the picture symbols I need to complete my schedule for this occasion.  Here is what the schedule will look like.  I need one for the day we depart, and I also need another one for the next day when we return.  Otherwise, the board becomes too crowded. 

Weekend Away Day 1                                                  Weekend Away Day 2

You may have noticed that some of the pictured items are not familiar to strangers "outside of the box", but that is intentional.  Every family has their words that describe something personal, like a "blankie", or certain toy.  We are no different.  You may have also noticed that I only showed a toilet once.  That is also intentional.  This is the only time of day (the morning) when the boys need a visual reminder to use the toilet.  It is not optional at this time of day for obvious reasons, but they are pretty good at self-regulating the rest of the time.  I do use the toilet symbol when we are practicing something new, especially when it's in a new location and they might not be familiar with the environment or where the bathroom is.  In this case, they certainly know.  Also, I have learned many things about our schedule over the years.  Some are difficult to even pinpoint.  As I was developing a schedule I learned that I only need  to use pic sims for things that are certain.  This schedule does not account for every minute of the day.  The boys only WANT to know what is certain.  I believe this is why they trust it so much.  So, if there was a time when they wanted to color or do a craft, I might leave that out because it's not certain or specific.  Also, I would not attempt to make a trip to the grocery store without including it (because it's a transition) because this is something they NEED to know ahead of time (I know this about my boys).  But, if it is something that they NEED to do, or they need to do it at a certain time of day in order to achieve a goal, then I would include it.  Hopefully, this makes sense.  The pictures that I've used give guidance and give specific items that they are familiar with (or sometimes not) and that they find comforting and certain.

Well, wish us luck!  I have faith that everything will go off without a hitch!  I plan to update this blog as we round' the corner to the second step and eventually off on our romantic get-away!  That's the goal after all!!!


UPDATE:
The first overnight went really well.  We made it out the door and into the car without any provocation!  Yippee!!  The ladies knew exactly what to do and there were no issues (unless you count the difficulty with electronics as a problem).  We made sure to have them write down any questions they came across so that we could answer them when we returned.  Overall, there were no huge questions, and all was smooth sailing!  Cannot wait for trial #2!!

Thinking About the Future

Other families often ask me what the future looks like for us and our boys.  There are many things that I think about when I think about the future with my boys. 

-What would happen if something happened to my husband and I?
-What do we want the future of the boys to look like, period?
-How can we influence changes now that will positively affect their future?
-What about financial obligations and benefits for the boys as they age?

These are huge questions, and they warrant huge answers.  We approached them one at a time.  The first several years of the boys lives were filled with a lot of anxiety on our part, and uncertainties.  There were numerous nights with little or no sleep.  One reason the sand man would not grace us with a restful night was the fact that we worried about "unknowns".  One of those was, what would happen to the boys if something happened to us?  Well, after many years of worrying about it, we decided to do something about it. 

In all honesty, the whole idea of doing a Will stemmed from an invitation for me to speak in Paris, France.  What an opportunity!  My husband wanted to go, but could not face the idea of leaving the boys.  We talked about it and decided that some resolution could be achieved by doing a full Will and Trust.  We researched and asked other families about an attorney in our area.  Soon after, we met with the attorney.  He asked us to complete a full packet of homework, including naming who would be the boys' guardian and who would be the trustee.  The best piece of advice that this attorney gave us was "This is modeled using information from today.  Do not think about 10 years from now because we can always modify the document later on.  Complete the information based on what you know today."  This was VERY helpful information for me because all I worried about was later!  How could we possibly predict the future?  We couldn't!  In the end, we created a Will to take care of our immediate issues, then we created a Special Needs Trust that would protect the boys' benefits offered by the State.  Naming a trustee puts any materials or financial posessions in the trust and not in the boys' names.  The trustee is responsible for alloting money to requested things, and keeping track of financial assets.  We could have named a bank or other institution, but we personally named a group of 4 people in succession (if one has passed away by the time it's needed, then it moves to the next person).  Then we named a Guardian.  This person would be responsible for the day-to-day care of the boys.  It doesn't mean they have to be the one to do the hands-on care, but they are in charge of whoever does.  We decided to also follow the 4-person structure for that responsibility.  We obtained permission from each and every person named, and made sure they felt comfortable with this responsiblity.

One fairly unusual thing that we also did all those years ago, was to decide that our current house would be home-base for the guys.  When we learned that there is a waiting list of more than 18,000 people in the State of Colorado for housing options, we knew we had to do something independent of that.  So, we made the house part of the Trust.  Over the past 20 years we have worked little by little to develop a list of physical things that we needed to modify in the house, and we've plugged away at making those changes.  Today, we still have a list, but it's much shorter.  As the boys grow we are more able to see how they use each space and to know what they are capable of doing on their own.  It is also more clear now on what things they will need assistance with.  This has really helped with detailing their adult plans to fit their needs. 

Most recently, we installed a fence around the entire property with a key-code lock.  This lock can be uploaded to a laptop and one can see who is coming and going according to individual PIN numbers assigned to every person.  This will be especially helpful when we are not in the home anymore.  From a remote location I can log in and see the activity into and out of the house.  Another nice thing we did was to install a thermostat controlled water heater.  The controls are in the main bathroom so that whomever is doing the "setting up" for shower time can adjust the water temperature to one son or the others' preferences.  We have made numerous other changes.  It is our hope that when we retire, we can phase out of the environment and another person or persons will phase in.

All of these decisions were difficult.  All of them were full of worry.  But, in the end it has allowed us as parents to sleep well knowing that, no matter what, the boys will have a place to call home and the means to live there.  Being proactive is so empowering!!!  Here's to a good nights' sleep!!!!

"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.

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 9^th 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.