Tuesday, May 28, 2013

Fresh, Clear, Well-Seasoned Perspective

Perspective has been a great teacher and I, a great student.

When I was young, I would sit on the porch in the summertime eating my cherry Popsicle with my best friend.  We would complain about the utter heat until perspective reminded us of the -20 degrees that we had complained about 6 months prior.

There was a blind young lady that lived across the street from us when I was very young.  She taught me, even at a young age, about compassion and empathy.  Never mind, the fact that she taught me to appreciate the gift of sight.  As I walked with her through our neighborhood, her holding my hand, I often wondered what it would be like to not be able to see everything around me.

As I got older, and my boys were born, perspective was still teaching me.  When Jake was diagnosed with Fragile X Syndrome (www.fragilex.org), and Joe soon after as an infant, I questioned how it could get any worse for me?  Raising 2 boys with a severe developmental disability was not a perspective I wanted to learn!  But, when Jake entered preschool and I observed children that had a limited life-span, or a condition that required much more care than he, I was again, the student of perspective.

As the years went by we were privileged to become acquainted with hundreds of other families with children affected by Fragile X Syndrome.   At first, our boys were always younger than those we met which provided us with lots of perspective about the future.  We clung to each and every tip or hint given to us, and to the hope for the day-to-day coping skills we so desperately needed.  Hearing that kids older than ours learned to do things for themselves and held jobs, was a welcomed perspective.  We weren’t alone.  I gave myself permission to shed tears.

I clearly recall the first family we met at our home with young adult boys.  This experience gave us a whole new perspective on what our future might look like.  It was a little bit scary at first, but in many ways it was much better than what our own imaginations had created in our minds.  These young men were well behaved, mostly independent, and of course, handsome.  These families provided us with perspective without even knowing it. 

Then, and very subtly, all of the families began to have kids that were younger than ours.  We became the teacher without even really realizing it.  We didn’t really understand how our challenges could give others something to cling to.  It was a matter of the cycle of experience….a natural progression.

Sometimes perspective comes from things that have happened to me….like I was my own teacher and student at the same time.  For example, today when I observed Joe doing something with ease that only 5 years ago was a struggle, the evidence is clear that time can be a teacher all by itself.

Even during the small events of life, perspective has been there to remind me, or help me see difficult things differently.  Like when we go to a restaurant (something that was almost impossible when the boys were young) and something about the food is not satisfactory.  Perspective helps me focus on how well my boys are behaving and shift my mind to what’s important.  Or when we have a serious mechanical issue with the RV while we are travelling….even though my instinct dictates that I freak out, I realize those boys are “going with the flow” and figure I might as well, too.

Perspective has taught me to say “oh well”.  Outside of the Fragile X World, without even knowing it, I have been a teacher.  A friend of mine came up to me the other day and said, “Oh, Cindi…remember the other day when we were talking and I was complaining about how I was disappointed in my son?  I so desperately want grandchildren, but he is not ready and we don’t see any sign of it?  Well, I wanted to apologize.  When I see you and your strength with your life and how you deal with your boys, I am inspired.  I had no right to complain.”  I replied, “Oh my gosh!  Don’t apologize!  We all have things in our life that are not to our expectations.  But, I am glad I can provide some perspective for you.  You never need to apologize to me.  I, too, have gained perspective from others that have had it worse than I.”

As we face the prospect of moving to the next chapter in our boys’ lives, we will be looking for perspective, but we will continue to provide some, too.  The groundwork has been laid.  We are moving to a phase where we need some perspective from outside of the Fragile X World…….to know that there is another life out there.  That is the next phase.

What a gift perspective has been for us.  I hope that all of the experiences we’ve had with our boys can help others in the Fragile X World to see that hope exists.  I want to provide that perspective and be sure that it sticks like glue.  No matter what the world may throw at other families, they can survive.  They can move forward.  They can thrive.  They can have a great quality of life even with Fragile X Syndrome. 

A quote from Anton Ego in the movie “Ratatouille”:  “…… you know what I'm craving? A little perspective. That's it. I'd like some fresh, clear, well-seasoned perspective. Can you suggest a good wine to go with that?”

Saturday, May 4, 2013

Making Lemonade

Things happen in life.  Sometimes they are things we planned, and other times not. 

When it comes to life choices I imagine the first real experience as an adult should be like the entry gates to Disney World.  There would be several lines to choose from.  So, when our parents are finished with their initial job of raising us, we get in a line.  Of course, a greeter would direct each person.

“The line to my right is for ice water.  This life is plain, predictable and quite boring.  You will have security, but only a few select friends, and no spontaneity at all”, he would explain.

“Now, the line to my left is for lemonade.  The lemonade line is for those who want unpredictability; a life full of diversity, some excitement, some challenge, and lots of friends.  This life will be hard, but fulfilling.”

Everyone knows the saying, "When you get lemons, make lemonade".  Well, as a young adult, I never drank lemonade, and I surely didn't want to have to make it!  I know I would have chosen ice water.  No doubt in my mind.  I preferred predictability (although there wasn’t much in reality—is there ever?), and I would have thrived on the mundane.  Of course, that’s not reality at all.

When I think about the choices I have made I am content.  For example, had I not chosen to take 7th grade French class, I never would have met Chris, my husband.  I cannot even imagine life without him.

We chose to have children, and hoped that our first would be a boy.  He was born and that was a blessing. 

We had a second child, and it, too, was a boy.  Now, here is the part where I say, be careful what you wish for, as it may come true.

In 1991, we learned that both of our boys were affected by a genetic disability called Fragile X Syndrome.  The rate of Fragile X in boys is much higher than in girls.  How could that possibly be a blessing?  Most, like us, fail to see how this could be a blessing. 

When we would watch our sons struggle to make it through each day, we did not think it was even close to a blessing.  When we cried daily, weekly or monthly over another lesson that we were forced to learn; one that we never intended to learn, how was that any kind of blessing?  Being forced to learn all of the laws pertaining to an education for our boys, or learning which medicine caused fewer side effects, or how to get one whole night of sleep…these were not things we asked for or wanted.  How was that a blessing? 

Seeing one’s children suffer to exist in a world full of sensory stimuli when they couldn't deal with it, was literally torture on a parent.  We were consumed by so much grief and suffering that we could not possibly see any kind of blessing.  We just hoped for survival.

Once, when the boys were little, we even attempted to take a vacation to a dude ranch in Aspen, Colorado.  The large amount of cash spent and the unsuccessfulness of it--that was not a lesson we wanted to learn.  We wanted to have a good time and see our boys in a happy state.  That did not happen, but, we did learn. 

Another time, after trying to figure out what might work for them and help their world co-exist with ours, we took another vacation to a cabin in the Colorado Mountains.  Another failure.  Another lesson.

Other lessons were daily ones, like trying to keep Jake interested in school so that his behavior wouldn’t become a pattern and pave the way for more of the same.  I am sure I could list at least 100,000 more examples of lessons learned, but that would bore even the Pope.  Suffice it to say that, we have had our share.

So, now that Jake and Joe are adults, we can reflect and see the contrasts.  We have arrived at a peaceful place where enough time has passed that we can clearly see the reasons for these lessons.

I cannot imagine life without the Fragile X Family that we have grown so close to and depend on for support.  Life would be quite lonely without them.  We have friends that we treasure dearly that are not associated with Fragile X, but I believe that the outlook we share with all of our friends stems from our perspective gained from Fragile X.

I am thankful that we sought answers when, as a baby, Jake was not speaking a single word.  Imagine!  Being thankful for that!  But, this caused us to go to the Children’s Hospital of Denver where we met Dr. Randi Hagerman, and subsequently got a diagnosis of Fragile X Syndrome.

Had we not had difficult behaviors with both boys, we never would have sought a solution.  We never would have met Tracy Stackhouse and Sarah Scharfenaker (owners of Developmental FX and “Rockstars” of the FX world).  Now that we are here, they have and will always play an important role in all of our lives.  They taught us all we know when it comes to day-to-day life with Fragile X and its source.  Had it not been for them, I would have never learned enough to be able to present “Mrs. Rogers Neighborhood” to all of the families that I have.  It has been such a pleasure to share the stories of our life with others in hopes of bringing them their own hope.  This is a big part of who I am.

If Jake never had behavior issues in school I would have never had the idea of creating the reward system that he still uses today.

For Joe, if he had never had all of the difficult and extreme behaviors that he’s had, we never would have learned all of the 1,000 ways to help him and allow him to be a participant in life….not just a lost soul.

If we had never had those dreadful vacations, we would never have bought “Rocket” (our RV), and had all of the memories that it has brought us.  We figured out how to makes vacations doable for the whole family.  It has also allowed us to connect with others that like to travel and camp with Fragile X kids, like the Brian Family from Georgia and the Kelm family from Calgary, Canada.  In fact, I remember the day that Lisa Overton Brian came to me with photos of their first camping experience.  They were so excited to tell me how successful it was for their son, and that they were inspired by our “Rocket” story.  We look forward to many other stories of families enjoying new experiences like we do.

I wouldn’t wish these lessons on anyone, don’t get me wrong.  I would not suggest that anyone stand in the lemonade line, except maybe to keep me company.  I am certain that I am not through with lemonade, or lessons.  In fact, I hope not!  That’s a lie….some of the lessons I could do without…..Now, I just enjoy my lemonade with a lot of friends, with my family and with a shot of rum.