Wednesday, October 9, 2013

My "Rocket" Men


Appendix provided in advance to ease your reading experience:
B.A.R.V. – Big A** RV
“Rocket”-The name of our RV
“DDD” – A Food Network program called “Diner’s Drive’-ins and Dives”
Fragile X Syndrome – A genetic developmental disability-for more information, please visit
www.fragilex.org
 
Camping was never a goal for my life when I was young, but fate pushed me to it.  Fate can be a funny thing.  Who knew that it would be my fate to be married to the best guy ever, even though I met him in 7th grade?  Who knew that we would have 2 boys, and both would be affected by an intellectual disability called Fragile X Syndrome?  Who knew that we would love them so much that we would literally do anything, even camping, to help them have a better quality of life?  Oh fate is an awesome teacher.

Did you ever start out a journey with the intention of learning lessons?  We did.  You see, when you travel by B.A.R.V. you always learn some lessons. Our current B.A.R.V. is our 4th RV, so we have a little bit of experience.  We know that some lessons are intentional, some are not.  Some are good; some are ones you wished you had never learned.

The unintentional learning comes almost silently.  Lessons learned in an RV are unique; unlike any others; and filling a world of their own.  Like, when I am making my way to the bathroom while the RV is in motion, knowing full well that it’s better to wait until we stop.  I’ve known about my need to pee for at least 20 minutes, but now it’s urgent.  I venture out.  I straddle quietly over Joe, as he sleeps with his legs outstretched over the aisle of the RV, while it’s moving.  I don’t want to risk touching Joe, otherwise he will wake up, and God help anyone who wakes Joe!  When I do finally make it to the bathroom, I am forced to grasp the sink tightly while I pee, as Chris turns a sharp corner just as I sit down.  These are amazing skills that will carry me far in life!

Intentional learning usually occurs by way of a “learned” lesson.  For example, before we left home on this long journey, from Colorado to Massachusetts and all points in between, we reminded ourselves of a recent trip we took to the south.  On that trip, we had some wonderful families come visit us for a potluck.  One of the young men locked us out of the RV, unintentionally.  So, before we even took off on this trip, knowing we were going to see families and kids, we prepared….we thought.  We have a remote key fob with our RV and we made sure it was secretly placed outside the RV so we could get back in if a lockout occurred.   Is that enough foreshadowing for you?????

It is always the people that we meet and spend time with that make trips in “Rocket” fun and worthwhile.  Paola, KS, folks greeted us with warm weather and hot food from a “DDD” place called The BBQ Shack, just down the road.  We had about 6 families come out and spend some time, including longtime friends, Angie Grantman, Brooke Stack and her family, Christina Murphy and family, as well as Donna Beauchamp and Spouse.  The kids played with “Lulu” our dog, and entertained themselves with food and other activities.  There was a nice playground just feet away! 
 
Next thing ya’ know, the adults are all outside and we hear a pounding from the INSIDE of the RV.  “Help! Help!”  Uh oh.  It seems that Ryan Stack, 8 years old, had somehow managed to lock himself INSIDE “Rocket”.  Our son, Jake was also inside, but occupied with his computer while listening to youtube with his earphones on.  Ryan began to hyperventilate a bit and cried for his Mom to help him.  My husband, Chris, quickly reached for the fob and attempted to unlock the door, per plan!  We heard the “click”, but the door would not open.  This prompted Ryan to become more scared and more vocal in his request for help.  We continued to try the fob and help Ryan to calm himself.  Ryan’s Mom stood by as I tried to verbally guide Ryan to help himself to unlock the door.  Problem was, I could not picture in my mind what the task needed to be!  Very frustrating.  By this time, the “helpful people” that Mister Rogers always refers to in any crisis, were coming to our aid.  We’ve found that camping people are always nice and helpful.  A small crowd was gathering around the RV as people ascertained that we were in distress.  We continued this routine of trying to unlock the door, while Ryan continued to click something on the door from inside.  It wasn’t working.  Now, the neighbor offers to loan us a key that “might” fit.  Not.  “Rocket” has a specialized set of door locks, only available in aircraft of this kind.  Ryan kept saying, “Turn” as I tried to describe what he needed to do.  He was exceptionally calm whenever we tried something specific.  This I found to be quite amazing.  Crying and banging on the door one moment, and focused and calm when we directed our efforts.  Finally, it occurred to me that there was a little window next to the door that required him to “turn” the knob.  I asked him to turn it and to keep turning until it was opened enough for me to reach my hand in, pop out the screen, and be able to touch him.  Ok, we had some person-to-person contact now.  I couldn’t reach the door lock, but there was another set of keys inside a cabinet above the driver’s cockpit. It required Ryan to step on top of the driver’s chair and get inside the cabinet.  With direction, he finally did open the cabinet, but he (for some unknown reason) would not reach in and get the keys.  THEN!  All of the sudden, we remembered that Jake was inside.  So, we coaxed Ryan into getting Jake’s attention (this is hard to do when he is watching youtube)!  Jake, calmly, got up, got the keys and handed them to us through the open window.

You might think that the lesson learned here was to keep a full set of spare keys outside of “Rocket” for occasions just like this.  No.  The lesson for me, personally, was to always remain calm.  It would not have helped if everyone was on the same upset level as Ryan.  It also reaffirmed something I already knew (but often need a reminder of); our kids ARE capable.  Our kids CAN do things.  Our kids CAN HELP. It’s up to us to figure out how to utilize their skills to allow them to do it!  It really was an amazing time.  Even with the slight tension of knowing that we might have to sleep on the picnic table outside (yeah, right….not with Joe!).  It all came out ok.  We were all ok.  Afterward, Ryan seemed (maybe it’s just me that saw it this way) to have a renewed sense of himself.  He enjoyed the rest of his time and even gave me a little hug before he left.  It was priceless.

Traveling through 19 states and visiting numerous families also affected by Fragile X syndrome is most often a challenge, even for the most experienced traveler.  It has provided so many opportunities for me to use my much-loved analytical and experimental self.  My pseudo-Cindi if you will.  

Taking Jake and Joe out of their comfort zone always requires a lot of planning on my part, but new places AND new people…super challenge.  People they have never met before, tons of small children, as well as unheard of traffic (Boston) and noises that we’ve never really had to adjust to (boats/ships)….a real experiment.  What I found though, is that they are really going to do their best if we follow some consistent methods.  I still used many of the same picture symbols to prepare their schedules.  I had the best luck using familiar and predictable wording.  It also seemed much calmer when we avoided the “unsaid” stuff. 

For example, when we ate out at a restaurant with wonderful friends like Melissa and Eric Welin, and Kathleen Quinn and Dennis Hazelwood, we were going to a “DDD” spot in Boston.  The layout was completely unknown to me; the environment was foreign so I could not provide much of a plan.  But, it was a restaurant in the mind of Jake and Joe.  We had also looked online at the menu ahead of time, so we knew they would have some of the boys’ favorite foods.  We stuck to those facts.  I printed a quick (Yes, we have a printer in “Rocket”!  It comes in very handy!) picture of the people from Facebook (don’t you love FB?) so we could talk about who would be there.  All of these elements really helped make the evening at the Boston Burger Company really special.

The same goes for when we had the opportunity to visit Joe, Leslie and Nick Garera in their lovely home.  We prepared based solely on what we DID know, leaving out the unknowns.  The boys did wonderful!  In fact, before leaving, Nick claimed they were “his boys”.  What a compliment!

There were several times where we had the opportunity to test the idea of entertaining right at “Rocket”.  We had a wonderful evening with The Butler family in PA, and the Zeleznik family in IL.  We also had the unique experience of hosting 5 families in MA.  Joe, especially, reminded us that he has always been better at coming to others rather than them coming to him.  So, we practiced doing it that way.  Nothing is ALWAYS the rule, or perfect, but in general, this philosophy worked like a charm!   So, whenever someone came to us to visit, we greeted them outside and waited for Joe to come to the door to ask them in.  I found that if I gave him visual and verbal notice ahead of time that someone was coming, also helped.

We have had the opportunity to travel many miles in “Rocket” over the years and have enjoyed many “DDD” spots as a result.  So, we know that checking them out online ahead of time is the best idea.  Some of the yummy food we see while we watch the show, is not something Joe would ever eat, so we peruse the menu.  It was no different when we went to a non-“DDD” called Zingerman’s Roadhouse with our friends Mary Beth Langan and Ted Coutlish.  It did not matter that it was not a “DDD”, although we really think it should be! Everything was delicious and we had a fantastic evening in MI!

There were several times that we saw the amazing adversity in Jake and Joe.  They were able to really initiate a conversation with others.  When we went to another “DDD” spot in NJ, 10th Avenue Burrito, with the awesome Fasciano family, we followed the same tried-and-true method of a “known” visual schedule and photo of them.  Having the Fasciano boys, who are 12 and 15, there, really brought out the best in our own boys.  They enjoyed just hanging together and we even managed to get a photo of the 4 boys together.  Everyone was able to hang out a few minutes in the RV afterward, which all of the boys enjoyed.

We had 4 days of just family time during our stay in the Pittsburgh, PA, area.  We visited the much anticipated Pittsburgh Children’s Museum to see the Mister Rogers exhibits, as well as the Heinz Center, where they also have some Fred Rogers memorabilia.  It was nice to get these “high interest” visits over early in the trip to help the anticipation factor, but one thing I learned this time around was to save a few small surprises for the end.  I didn’t do a good job of that, but will make note for next time.  It might help prolong the fun a little bit longer rather than it just be about getting home.

Being exposed to many children, both young and around the same age, opened up our boys’ world to a higher level of tolerance.  They are not around young children very often, and this gave them a chance to learn and us a chance to observe.  We made sure to provide breaks whenever needed and allow them to withdraw at will.  This made it a successful visit.

For me, personally, I was allowed to further my own mission to help other families, during this trip.  One way that I was able to do that is by presenting our story in a presentation affectionately called, “Mrs. Rogers Neighborhood”.  I had the honor of giving that presentation in both the Lancaster, PA, and Sioux City, IA areas.  It gives me a great sense of peace when I can meet other families and tell how proud we are of our boys and their successes.  After the PA mini-conference, I had the privilege of spending some time with 3 other really great Mom’s.  We chatted and shared stories.  It was a nice evening of friends, food and fellowship. 

Following the full-day conference in Sioux City, expertly organized by Tim Geels and his lovely wife Jammie, Nancy Carlson and Brenda Slama, our whole family, along with several others shared experiences and sat together for hours at a potluck dinner, laughing and eating.  The demands were high on all of the kids with the noise, new environment and sheer numbers of people.  All of the kids did wonderfully.

As with all trips we go on, the FOOD was amazing.  We cannot even discuss a trip without talking about the tasty vittles from each place we visit!  From the Cronuts (donuts made from croissants, OMG) hand- delivered by Paula Fasciano, to the delicious and beautiful cupcakes brought by Amy Zeleznik, to the baskets and bags of local goodies thoughtfully provided by Ruth Butler and the Sioux City group, to the scrumptious pie that Leslie Garera served…..it was all amazing!  We had to make a 2nd visit to a few of our favorites like DeNic’s in Philadelphia, and Primanti Brothers in Pittsburgh!  Nom nom.  We love the idea of eating our way through our wonderful country!  My waistline isn’t so fond, but it’s vacation!!!

I am constantly reminding myself of how many of these people I would have never had the privilege of knowing had it not been for the Fragile X diagnosis.  In the early years, we were not at all enthusiastic about such a prospect, but now…..our lives have been greatly enriched.  I know I am a lucky person.  I have had great support from professionals throughout our boys’ lives, as well as personal support from many friends.  One unique group of friends that I lean on pretty heavily is a group of ladies that calls themselves, The Birches, named after the ever-strong, ever-bending Birch Tree.  The very intimate, personal chats from Melissa Welin, Holly Roos, Kathleen Quinn, Amy Zeleznik, Mary Beth Langan, Paula Fasciano, Talitha Humphrey and Karen Kelm, have been invaluable.  The support we provide each other is also invaluable.  It is my hope that each and every Mom and Dad faced with life challenges will have strong support; if for nothing else but an ear to listen or a shoulder to cry on.  I am thankful for the Birches.

As we reflect on this awesome journey, we will always talk about the incredible growth we continue to see in Jake and Joe.  This trip was quite a test!  They passed, in our minds, with flying colors!  It’s been a long road, but I would not trade our fate for anything.

Tuesday, June 4, 2013

Is There More to Life???

Sometimes I allow myself to think about when our son, Jake, was first born.....BFX—Before Fragile X.  He was the cutest baby boy ever.  I know this is true because I, personally, had never seen another boy so precious.  He was perfect in our eyes. 

We did all of the stuff our parents and friends had advised us to do.  We did all of the Pediatrician appointments right on schedule.  We immunized.  We fed him when he was hungry, and changed him when he was soiled.  When I watched commercials on television, I could relate to every baby commercial.  It was all as expected.  We were so happy. 

As he grew, there were little things that didn’t mesh with what experts said was common.  We worried a little bit, but, we went on with life and all of its joy.  Those were the days of carefree thoughts and hope for the future. 

Then, in 1991, when our newborn was 3 days old, we got the news that Jake had Fragile X Syndrome.  Subsequently, a few months later, Joe was also diagnosed with it.  The fantasy life was over….at least we thought so.  Much time has passed now….22 years…..and we have come full circle.

Yes, Fragile X Syndrome does exist.  Yes, my 2 boys are affected by this genetic developmental disability.  Yes, we’ve known for 22 years.  But, lately I’ve been thinking about other things.  Life things.

I think about when my boys were young and when Fragile X and all of its evil symptoms reared their ugly heads daily.  We were consumed with the management of it; we were raising awareness so their world would know more about it and accept them; and we were busy with their full-time care.  Now, not so much.  It’s because we did something.  I know that now.

Beginning when our boys were about 8 and 10 years old, we rallied all of the troops (our “team” as it were) to make a difference in their lives.  We studied every method and approach known at the time.  We tried them out to see what worked and what didn’t (we are still working on that one), and we implemented one at a time.  Slowly, but surely, over the next 8-10 years we saw progress.  Some progress was almost immediate, but other things required more patience.  We saw these boys come to life and be able to do things on their own.  Don’t get me wrong…..it takes a lot of patience and perseverance on our part to make each little thing work. In fact, when it comes to a routine task like brushing teeth, we are still trying to figure out each minute step.  But, we have not given up!  There are many other skills to work on as well, but one at a time!  We don’t feel in such a rush for time to pass by.

Of course, we did the annual (and sometimes bi-annual) visits to the experts.  We tried no less than 30 different medications.  Some worked as expected….others not so much, but, we tried.  We pursued every therapy known to man, and did the work at home to reinforce it and build consistency.  There were no guarantees…only the hope that our efforts would reveal a small glimmer of hope. 

How do I know things have shifted?  I can see a newborn baby and not be jealous of the possibility of a “typical life”.  I can see a wedding and not cry for what could have been.  I can see kids now and just see the kids.  And, most of all, I can see my boys as human beings…..not as “boys with Fragile X Syndrome”.

We get up each day knowing that progress can happen with the right support and knowledge.  We have hope for the future.  We can see change happening right before our eyes still to this day.  It is very empowering to know that WE did this.  All 4 of us together.  We made the effort and the boys rose to the challenge. 

Which brings us to the current day.  Nothing is perfect, and neither is our life.  But, we have the tools and resources our boys need to keep going.  We don’t have to worry about every detail every day.  We still work on skills and proficiency and patience.  We worry about whether the “plan” will work out the way we think it should.  We worry that there will be enough money to take care of all of it.

Yes, Fragile X still lives here.  It’s genetic!  It’s not going away!  But, time and effort has allowed me not to think about it every waking minute.  Now, I cannot help but think about our business, about a relaxing vacation on the beach (someday), about taking off in “Rocket” (our RV) and HAVING a peaceful weekend WITH the guys.  Yes, it’s all come full circle now.

I actually find myself daydreaming about typical things, like retirement (it’s still some years away, unfortunately) or recalling memories with friends that have nothing to do with Fragile X.  I can even think about myself.  I can take time to go for a 3-mile walk.  I can enjoy time with my book club, after having actually READ the book! 

I like to think about this as an evolution.  A real life natural evolution.  Is this the way things are supposed to be?  Perhaps, for our children to consume our every waking moment until they are young adults and then allow ourselves to move on IS the natural evolution?  A way to move forward?  To emerge as a person now, and not just a parent?  That all sounds pretty typical to me.

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.

Friday, January 18, 2013

My Fragile X Life-A Chronological History-Part 2


Earlier I wrote about our first decade of living with fragile X syndrome.  To read Part 1 click here: http://mrsrogersfxneighborhood.blogspot.com/2013/01/my-fragile-x-life-chronological-history.html.

For us, the 1990’s were a decade of learning, evolving and, grieving. Even with as much as we had learned already in our journey, there was still much work to be done, especially on the home front. The 2000’s turned out to be a decade of changes, challenges, and implementation.

What follows is part two of a two part series; I hope families who are not so far along in their journey can perhaps learn something from our experiences, from how our lives have evolved from those early days of shock to our current days of (mostly) joy.

A New Decade

The new millennium brought many new adventures our way. There was still much work to be done, especially on our own home front.  We shifted our priorities from trying to raise awareness to just focusing on how to help our own boys.  We were now ready to face the reality that lay before us.  It took us some time to be able to “face the music”, but we knew it was the next step in the grieving process.
At some point, what we really discovered, again I don’t remember when, was that this long journey…..was all about US.  We were the ones experiencing change; we were the ones grieving; we were the ones facing the challenges.  The boys were just the boys.  They were born with this thing called Fragile X, and they knew no different.  They were simply waiting; waiting for us to get our “poop in a group” and love them, and teach them, and face them.  This was the revelation.
In the summer of 2000, the 7th International Fragile X Conference was held in Los Angeles, CA. By this time, my whole family was very invested and involved in Fragile X so my Mother, Father, Sister, and I attended this one. It was at this conference that I met some other long-time friends in the Fragile X community, like Kareen Weidenfeller and Tracey Shaffer Weinstein. Both of these ladies’ smiles are always present and always evident at every conference. They both also have children about the same age as my boys, which helped form a bond among us that remains unbroken.
Up to this point, Jake and Joe had been cute, adorable, loving, cuddly little boys.  Chris and I were able to manage their day-to-day care, even with both of us working full-time. But, now they both required more therapy and a much bigger slice of the “time pie”. If one or the other was sick or needed to go to the Dr., one of us had to take off work, and this was a lot!  We both pitched in and survived this time period, but I have no idea how.  I suspect it can be attributed to sleep-deprivation.
In 2001, I decided to give up my full-time career for a more challenging daily life; managing my own boys. Even though my paid job required 60 hours a week, this new challenge proved to be no simple feat!  Jake was 11 and Joe was 9. Puberty was just around the corner and behaviors and changes were upon us. It took me nearly 6 months to adjust to this new lifestyle. After that, I planted my feet deep in the soil and held on.
This same time period was also a big year of change for the professionals that had been in Denver. Dr. Randi Hagerman, Dr. Paul Hagerman and his team, as well as Tracey Stackhouse and Sarah Scharfenaker (a.k.a. “Mouse), and others moved their practice to Sacramento, CA, to the M.I.N.D. Institute. This was a huge change for us and for the Fragile X community of Denver. The National Fragile X Foundation had already been relocated to California, so Denver almost seemed like a ghost town. For us, it also meant an end to the weekly visits with FX families, something we missed very much.  Additionally, I passed the torch for managing the Denver support group.  I needed to focus solely on our family.

Finding my “Path to Purpose”
We worked with various therapists for a time, continuing the methods and strategies that we had learned prior to this point.  In late 2002, Tracy and Mouse moved back to Denver. In 2003, they founded their own non-profit company, Developmental FX. What a miracle!!!  Now they were in Denver full time and providing multidisciplinary assessments, intervention, consultation, and follow-up in the areas of occupational and speech/language therapy, psychology and developmental medicine, for children and families. As a bonus, I could say, “I KNOW THEM!!!”  We worked together very intensely for several years developing a specific plan for our boys. We refined and “perfected” tasks and methods just for Jake and Joe.
Looking back, I believe that prior to this time I was not ready to take in or hear what needed done.  Of course, I had heard many of the very same strategies and methods to try from many others before this, but I wasn't ready to listen.  As they say, "Necessity breeds invention".  I understood now.
In July, 2008, I gave my first presentation of “Mrs. Rogers Neighborhood” (a seminar about living the "Fragile X Way") at the 11th International Fragile X Conference in St. Louis, MO. I was so nervous!!!  I was sharing very personal elements about our family and our boys. The crowd was very quiet as I gave specific details about using visual schedules and some of the most difficult challenges we had faced. I cried along with the audience as the final video played. The session was over and I felt so proud of myself for doing it.  Sharing my own personal feelings was very difficult, but talking about our boys was easy.
Afterward, many, Moms’ in particular, approached me with questions and requests for more information. I knew then that my mission was clear. I needed to be available for FX families; to spread the word about what our kids with Fragile X CAN DO!  I needed to convey to other parents how much IS possible. Most of all, I needed to spread hope that it would be ok. We now knew that it would. 
Since that first presentation of “Mrs. Rogers Neighborhood”, I have had the privilege of presenting alongside Tracy and Mouse, the ones that mentored me, on many occasions. It is an honor to observe and learn from such experts who have dedicated their lives to helping create quality lives through treatment and support.
Chris, my patient and amazing husband, and I really started to shift our lives and our thought processes in the 2000’s. We started to see the potential in our children, as well as what our priorities needed to be. We began to make a written plan, and to implement many aspects of that plan. We became empowered.
In 2010, the conference was in Detroit, MI.  With every single one I attended, I saw more and more friends and learned more and more good information.  With every International conference I also have a renewed enthusiasm in helping others and spreading hope by sharing our story.  While there, I was a little bit overwhelmed by all of the new technology that had pushed its way into other kid’s lives while I wasn’t looking!  Thank goodness I had a few awesome new friends to help explain it to me!  I met Holly Usrey Roos and Eric and Melissa Welin one evening during the conference.  To this day, we still laugh about the discussion that night and my lack of technical skills.  They have worked so hard and patiently with me, and a friendship has blossomed like no other.  Like many others, this friendship started as a speck, but has grown to be so meaningful.
In 2012, I also had the privilege of going to Guatemala and talking to parents there.  Even in the face of very challenging ways, these parents still had much hope.  The new friendships formed there are genuine and sincere.

Fast Forward to Today
There are conferences held, like the one held in Miami in the summer of 2012, that draw well over 1,000 attendants from all corners of the world. This is due in no small part to the hard work of the many folks that now work for the National Fragile X Foundation. Even though this was my 9th conference to attend (I skipped Washington, D.C. and Atlanta so I could focus on my own boys), it was still very familiar and very overwhelming.  I have come to realize that the learning and emotions are part of the evolution and a necessary part of the puzzle.
Parents are now connected daily by way of social media such as Facebook. They are united through activities that raise thousands of dollars each year to support the mission closest to their heart. LINKS groups (local Fragile X support groups) are established all over the U.S. bringing families together through organized and not-so-organized means (perhaps a FX moms a “ladies night out”). The bond among strangers and the unification of individuals is reaching points we never imagined as we sat around our dining table back in 1995.
Doctors are more educated and actually provide treatment to children and adults with Fragile X syndrome, FXTAS, FXPOI, and many other things that were previously unknown. The future of this field is very hopeful.
I have thousands of friends all over the world that I can talk to whenever I want. We are able to share concerns, tears and laughter over things we have been through or are going through right now. It’s amazing.
So much has changed in the world of Fragile X and it is our duty and honor to pass the torch, to make sure that others know our common history, to remember the ones are that cut the track and then paved the way. It is important not to forget who:

Discovered Fragile X;
Founded the National Fragile X Foundation;
Makes each and every International Conference possible;
Discovered ground-breaking methods for day-to-day functioning of our kids;
Has seen families constantly and cared for them;
Has dedicated their lives to this genetic cause;
Lobbied for monumental legislation like IDEA;
Helped create educational innovations such as “Integration”;
Continues to research and discover new and amazing things about Fragile X;
Saw a need to bring together families and organize support.
Look them up and become familiar with them.  It is our history and we need to know.
All of these things are ongoing, but they had to start somewhere. I was mostly just a spectator, but when I was a participant, it was my privilege.  All of this history is what makes me who I am today. Then, I couldn’t imagine my life with Fragile X.  Now, I cannot imagine my life without Fragile X. Kind of ironic, isn’t it?

Looking to Tomorrow
As I recollect my past and that of my family I am struck by the vast contrast between our lives now and the hardships endured by our ancestors before us. Whether it is the challenges of Fragile X, or suffering, or tragic death…they all teach us lessons. Our story is unique, but it is not different. It gives us perspective. The rewards for being a parent of kids affected by Fragile X are not extrinsic.  My perspective comes with inner accolades.
After 21 years of Fragile X, we are now able to realize that the Fragile X world is only a small part of the grander universe, just one star in the Milky Way. Yet, we have spent almost half our lives immersed in this world.  Sometimes I wish I could just “opt out”, like that first Mom I called. Obviously, that was not the road for me.  I have no idea how long Chris and I will continue to be involved. Only time will tell. For now, Jake and Joe still live at home with us and we have some years left to work before we can retire, so in reality, “Fragile X still lives here”. Our future is still being told and we are still working on the final outcome.  We have our list, and our goals, many of which are checked off.  We will continue to plug away.
As a person, I believe I have grown more than I ever imagined.  When I was young I had a very idealistic view of what my life would become.  I was very goal-oriented, and I still am, but now those goals are realistic and measureable.  My life has exceeded those goals.  Never did I imagine that I would have the patience I have, or the passion for life, or the level of personal satisfaction that I have reached. 
As a couple, Chris and I are stronger than most others we know.  This thing called Fragile X has helped us grow together in a way most will never experience.  We have a unified mission that drives us each and every day.  It’s forever.
As a family, we are committed to making a beautiful life together and going the full distance.  I think we are on the right path.  One of my favorite sayings is, “Your perspective is only as deep as your experience”.  I think we have a pretty vast and positive perspective.
From where I am sitting now, it is so peaceful to look back now.  To see how much we were able to positively affect change in our boys once we figured out what really needed done.  The realization that it was us that needed to change, not the boys.  Once we resolved ourselves to bending to meet them where they were, and working hard to lift them up…..life became good.  Once we realized how we would fit into their lives…..contentment settled in. 
If only it were easier to help others see through the lens of my life.  If only I could help other parents skip the hard part.  This would be heavenly.  I will keep reaching down to lift them up if I can.  I will keep telling others about how good life can be with Fragile X tagging along.  Chris and I will keep plugging away at giving our boys everything that we can.  It’s going to be ok….we know that now.
I often defer to the words of Mr. Fred Rogers of “Mister Rogers Neighborhood”, as his words give me much comfort:

Very early in our children's lives we will be forced to realize that the "perfect" untroubled life we'd like for them is just a fantasy. In daily living, tears and fights and doing things we don't want to do are all part of our human ways of developing into adults.”~~Fred Rogers

Monday, January 14, 2013

My Fragile X Life-A Chronological History-Part 1

As I was cleaning out some files the other day, I ran across one marked “Fragile X Presentations.” Inside I found an article I had written way back in 1995 — only 4 years after our diagnosis. As I read it, my mind drifted to that long ago time. It was clear in that article that my emotions were still pretty raw. Such remembering provides me with a perspective which helps me celebrate the challenges we’ve overcome rather than focus on the depth of what we’re in at the moment. A lot has happened since then, both personally and in the world of science; I didn’t always have this perspective, believe me.

Our boys, Jake and Joe, were both diagnosed with Fragile X syndrome in 1991. We were provided a full packet of paperwork by the geneticist at our first meeting, which included the phone number of a local mom. Back then, we didn’t have e-mail, there was no Facebook and there was very little contact with other families. I finally worked up the courage to call the mom who was, at the time, the leader of the Denver support group. She told me, “I am not really going to be very active in the support group anymore due to my parent’s health. My son is now living away from home and doing well, so I don’t really have the time to dedicate to it anymore.” As a newly diagnosed family, we couldn’t imagine a time when fragile X wasn’t our world and the idea of “not having the time” for it was unimaginable. It was too new, too fresh. With the benefit of 21 years of perspective, we are now able to realize that the fragile X world is merely a speck in the whole scope of the universe yet, at the same time, we have spent almost half our lives immersed in it.
The 1990’s were a decade of learning, evolving, and grieving for us. Even with as much as we had learned already in our journey, we discovered that there was still much work to be done, especially on the home front. The 2000’s turned out to be a decade of change, challenges and implementation. Today, Jake and Joe still live at home with us and we still have some years left to work before we can retire so, for now, our future is still being told and we are still working on the final outcome. I have no idea how long Chris and I will continue to be involved in the Fragile X community.  I suppose only time will tell.
What follows is part one of a two part series; I hope families who are not so far along in their journey can perhaps learn something from our experiences, from how our lives have evolved from those early days of shock to our current days of (mostly) joy.
 
In the Beginning
As I said, our boys, Jake and Joe, were both diagnosed with Fragile X syndrome in 1991. I don’t remember the exact date like many of my friends. For me, the exact dates are not important; it is the outcomes that stay with me. It would be difficult for me to recollect all of the details of the past 21 years, but certain things do stand out in my memory.
I remember the geneticist telling us at our first appointment that, “Jacob will never go to college. He will likely never live on his own, but will probably live in something called a group home setting.” Those words settled themselves in my mind but I considered them a challenge, not a conclusion. We spent the next several months at doctors’ appointments, therapy appointments and just trying to figure out what we were faced with.
We had some contact with other local families in those early days. I remember the meetings at other people’s homes. I also remember some of the information that was shared. Jake was only about 3 years old at the time, and some of the stuff we heard from the other parents was frightening! We were not at the point where we could relate yet.    We were still in shock and trying to figure out what Fragile X meant, and what was next.  We were so afraid of the unknown, of what the future would or, more importantly, would not hold.  If we based our expectation solely on what we heard from others….it would be bleak.

One of the first memorable pieces of reading that was given to me was a poem called, “Welcome to Holland,” by Emily Perl Kingsley (http://www.our-kids.org/Archives/Holland.html). It is one of the most highly circulated in the fragile X community. It still rings true every time I read it.
 
Getting Involved
Then, in early 1994, the amazing Dr. Randi Hagerman brought together several families from all over the state of Colorado to participate in an activation of grant funds that were to be used for families. The group decided to use the money to try to organize and establish support groups in the four main areas of Colorado. There would be Northern, Western, Southern, and Metro Denver area groups. I got busy making phone calls and sending out letters to all of the families listed on the roster. The meetings were sporadic, but welcome for us.    It was the chance to know that we weren’t alone.  Fragile X was not well known at all, but at least we had other families that were in the same boat with us. 
Doctors Paul and Randi Hagerman had founded the National Fragile X Foundation in 1984, and by 1994 there was an office in downtown Denver. The staff were all volunteers except one director. I tried to spend a little bit of time helping out. I was an Executive Assistant for the President of a world-wide engineering corporation at the time, so I could offer some organizational skills and general office knowledge. Much of the work that year was in preparation for the 4th International Fragile X Syndrome Conference, which was to be held in Albuquerque, NM. Looking back, I now realize how important the Foundation already was to so many people; it was providing loads of information to families all over the world.
Around 50-100 people attended that conference in Albuquerque. I made the drive from Denver with another mom so we could share expenses. We made the best of the 10 hours by chatting and comparing experiences. I had the pleasure of meeting other families like Julie and Rick Schleusner, Jayne Weber, and Arlene and Jeffrey Cohen. It was so nice to meet others that had the same questions as I did and the same worries that kept me awake at night. Both the Schleusners and the Webers lived in Colorado, as did many of the other attendees. Professionals from all over the country and the world were also in attendance. I have since thrown away much of the information that was shared at this conference (I think 2 file cabinets full of information on Fragile X is enough, don’t you?)  but, suffice it to say, it was ground-breaking in the field of fragile X at the time. Most of the parents in attendance were all still in the beginning stages of diagnosis - grief and utter dismay.
It would not be until many years later that I realized how lucky we were to have lived in Denver during this time and how lucky we were to have met Dr. Hagerman. If we had to have Fragile X, we were in the right place at the right time.
1995 was a big year in my own life. My mother, sister and I were traveling back and forth from Denver to Detroit visiting my mom’s ailing parents. We made many trips between 1994 and 1996. During one of these trips, we had the pleasure of spending an afternoon with Arlene and Jeffrey Cohen. I remember this visit well. It was so nice to meet other kids around the same age as our boys and to see them in their own home environment. Seeing some of the exact same emotional and behavioral difficulties that we were grappling with made me feel right at home.  We chatted for hours like we had known each other for years.  It was all very familiar.  It made a difficult trip more enjoyable. The Cohens have been a continuous force in the Fragile X world and I feel honored to know them.

Building Awareness
I too have strove to build awareness of Fragile X – even when it meant stepping WAY outside my comfort zone.  In 1995, I did something that was totally out of character for me all in the name of fragile X. It was my personal mission at the time to help spread awareness about fragile X. Knowing that so few people knew what it was or how many would be affected maybe made me a little bit crazy at the time…you be the judge!
I saw an ad for a beauty pageant for Mrs. Littleton, Colorado. The requirements were minimal, most importantly I did not have to have a talent, so I registered, prepared, competed and, much to my surprise, won. Then, I had to compete in the Mrs. Colorado pageant.
When I met the other contestants at the state level competition, I realized that I had no idea what I was doing. These women were serious and I was just doing it for exposure! I had never done anything like this while they all certainly had. I felt out of my league. I didn’t have near the time to dedicate to it as they had but I did learn many things from these ladies.
Never in my life did I think that I would have the need to use spray adhesive to hold clothing in place. It sure helped when I found myself parading around in a bathing suit in front of hundreds of people though! Nor did I know that duct tape could have so many uses! My husband knew it was an all-purpose application, but me, never. Oh, the life lessons we learn on the the Fragile X road! These shall stay with me for all my life.
The night of the competition, Dr. Hagerman, Tracy Stackhouse, Louise Gane and Sarah Scharfenaker were in attendance, along with many from my family. It was a night I will never forget. Some days I wish I could wash it from my memory, as it is so uncharacteristic for me (I actually wince when I think about it now). I did feel quite special though. Others sometimes say, “I felt like a beauty queen,” but I actually did! I placed 11th in the competition when my special night was over but I did teach at least one more person about fragile X. During both my stage and private interviews I spoke solely about my Fragile X platform and what it meant to me and my family. Mission accomplished.
 
Into the Thick of It
Later in that same year, Dr. Hagerman asked if Chris and I would like to be sort of a family liaison to visiting families and we agreed. Families visited the Children’s Hospital of Denver Fragile X Research and Treatment Center just about every week to see Dr. Hagerman, and we wanted to help. We decided that we would host as many families for dinner as we could during their visits to Children’s. It was just a small token, a simple sharing of a pizza or hamburgers on the grill. Little did we know how therapeutic this would be for us as well for the other families.  I often felt like I could just sit and observe the other families.  I wished to see myself through someone else’s eyes and to see their children as my own.  When families with older children visited, I was very curious to know if my own boys would be similar to them.  I was gathering information and storing if for a later use.
Over the years, we had the absolute pleasure of meeting hundreds of families including; the Devines in 1998 (Denise reminded me of the date because they remembered the John Elway Superbowl celebration during their stay); Leslie, and Joe Garera with their son in 1996 and 1999; Suzanne Balvanz and her son around 1995. Many are quite memorable…some for funny reasons, and some due to our own meltdowns during the visit. Many of these families we met in the early years have since “retired” from the fragile X life, but several remain. One of the most marked things that has stayed with me is the fact that these families thanked us profusely for the meal and the visit. What they didn’t realize is that we gained MORE from the visit than they ever did.   Looking back now, I feel as if these visits provided more insight into those unanswered questions.  It was hard sometimes meeting older children, but in hindsight, it was so helpful.  It also gave me confidence to know that parents with older children survived.  They had a certain calm about them that I longed for.  We received a therapy way beyond what any doctor could have given us. We cherish those memories.
In the summer of 1996, I attended the 5th International Fragile X Conference in Portland, OR. There were even more families this time, and many with older kids. I remember feeling very hopeful. I felt a connection to many of the people at this conference. Since I had already met the Gareras, the Cohens, the Devines and many, many others, it was already like a reunion.
One thing I clearly remember about some of the early conferences were keynote speeches by actual adults with full mutation Fragile X.  The young men that gave the speeches were very brave and courageous.    To see these young men get up and have the courage to speak in front of hundreds of people, and to be able to call up and deliver the words was amazing to me.  These sessions were standing room only and always ended with the entire house in happy tears.  I dreamt of my own sons doing that one day, but it was not to be.  At this stage in our journey we had no idea how affected Jake or Joe was, and we had no crystal ball to tell us the future.  Neither of the boys were speaking much at this point, so all I had was my dreams.

Taking to the Road
In March, 1997, I had an opportunity unlike any other ever in my life. Dr. Hagerman invited me to attend a conference on Fragile X in Paris, France. This was also the first time that Chris and I would travel outside of the United States. It was so humbling and we were so full of excitement. We met many parents from all over Europe who also had children with Fragile X syndrome. I was asked to talk about our experiences in raising 2 boys with Fragile X. I had to force back tears as I read from my script. It turns out that our experiences in the U.S. were vastly different from those in Europe. We returned home feeling extremely lucky to have the doctors and therapists that we had, as well as our education system. It was such an honor and a memory that I will never forget.

As word of Fragile X reached more and more people through the awesome work of Drs. Randi and Paul Hagerman and others, it finally caught the eye of a reporter at the Rocky Mountain News in Denver, Colorado. In April, 1998, the newspaper sent a reporter and then a photographer to observe our little family. I have held on to this one piece of memorabilia for some unknown reason. The pictures take me back to a time when my energy was so spent.

 
After our first trip overseas, Chris and I were eager to return, so in 1999 we did just that. We took a vacation to London, U.K. for 10 days. Since we had met a few families in 1997, we were honored to be invited to the personal home of a family in London. We had a lovely dinner and shared experiences with 4 other families. We sat around a large table, shared wine and especially stories of our lives in living with Fragile X.  The words escape me to describe how wonderful this was. Many of these families are no longer involved in the fragile X world, and I miss them.
 
Next Steps
As we approached the end of our first real decade in living with Fragile X Syndrome, we still had many emotions and other issues that had to be dealt with.  We knew it.  Now we felt like we had some of the tools we needed to go forward.  We still had some learning to do, but we knew more than we started with! 
I have always been told that I am a very “pragmatic” person.  Even with something as major as Fragile X, I never really focused on the “why” question or the possible answers.  Everyone is different in how they handle such a big things in their life.  I tend to be one more for action than questions.  Some may call this being a “fixer”.  Heck, if something doesn’t work, try again, that’s my motto!  I am sure I had many sad moments that involved grieving for the loss of our expectations, etc.  Or, maybe we never had any?  I don’t really know now.  We were very much engrossed in the day-to-day care of the boys, juggling all of the school issues, and trying to provide what we thought was a quality life.  We still had more work to do and more challenges to come.
But what we DID have was a sense of bond with many other families.  To think that something called Fragile X brought together strangers from all over the country and the world, and made a new community.  We never had to feel alone again.  We also had a real sense of purpose that would help motivate us when the times got really tough….and we knew those days would come.
Continue reading part 2 here http://www.mrsrogersfxneighborhood.blogspot.com/2013/01/my-fragile-x-life-chronological-history_18.html