Fragile X Writers Series - He Drove.

We'd never underestimate our children, would we?  Of course not.  But they have Fragile X.  It's a genetic fact.  It holds them back.  There's so much they would never be capable of doing.  Or is there? 

Cara Capela hails from Livingston, New Jersey and she and her husband have an eight year old son with Fragile X.  Hayden is a precocious and creative child - something I believe you agree with wholeheartedly in the next few minutes.

Today, Cara Capela shares with us a story of horror and bravery.  A perfect example of "truth is stranger than fiction," this story will shock and surprise you, and make you reevaluate what you believe your child is capable of.

Cara blogs at AwareneXs, and I thank her deeply for telling us this cautionary tale.

Allow me to preface this with a perspective of our experience, with a child who has global developmental delays:  at eight or nine months of age Hayden learned to sit up, at 15 months of age Hayden learned to crawl, at 19 months of age he took his first steps, and by 21 months of age he was a confident walker.

One day, somewhere between the crawling and the first steps, imagine my surprise when I was home with him and suddenly heard a loud crash.  I had gone in the other room for a minute and Hayden attempted to use our floor-standing tower fan to pull himself up.  The fan fell over and pierced right through the glass-sided curio cabinet like a torpedo.  By some miracle, not a single shard even touched him.  I know I was not the only first-time parent who read about what to expect, but this was one of many eye-openers: the fact that all of the child locks, anchored furniture, and covered sharp corners in the world can not prevent every accident.

So after the glass was replaced to repair the cabinet, my father custom-made a large three-sided panel of Lucite to go around the bottom half of the cabinet.

If only it was realistic to have such an enclosure to protect our children forever.

Approximately two and a half years later, on a typical weekday morning, I got Hayden ready for school and then started to get myself together for work. I would always get ready in stages (pretty much still do)… for example, shower and then go check on him… get dressed and then go check on him… start on my hair and then go check on him… etc. This is familiar routine to me, and our home is so cozy in size if you will, that the stopping-starting factor is hardly a bother.

So this one day in particular I was at the start-on-my-hair stage, when I realized the house was too quiet.  Even from the farthest end of our ranch-style home I can still just barely hear the television from the living room.  I walked through the house, legitimately confused, and then I heard what sounded like… my truck.  I looked out the window and sure enough, my big blue Chevy blazer was backing out of the driveway.

Countless thoughts filled my head within two seconds… no time for shoes... my truck is being stolen... where’s Hayden… can’t run back for my phone… again where’s Hayden… is the front door locked on the inside… where are my keys… how is any of this happening… look up Cara… can you see anything… who the… it looks like… yes, a little kid behind the wh--

It's Hayden.

Let me just interrupt this moment to tell you when I was a child, one of the superpowers I imagined having was the ability to fly.  Decades later I discovered I could.  I am fairly certain my bare feet never touched our eight front steps that day.

When I reached the hood of my truck Hayden was momentarily stopped.  As he backed out of the driveway, he actually turned the wheel in the correct direction so the truck was appropriately angled to head down the hill and out of our neighborhood.  As a matter of fact, he had even braked in time so that the rear tires were at the grass line of the neighbor’s front lawn across the street.

He was sitting on his knees at this point watching me through the windshield, very proud of himself and particularly happy to see me.  Within the next fraction of a second my head filled again… this can’t be happening… please don’t accidentally run me over…. this really can’t be happening… shit what if the car door is locked… this can not possibly be happening… oh my G-d is anyone watching us…

I do not know how, but the driver side door was unlocked.  There was no time to move Hayden out of the way, so it’s possible I was partially sitting on top of him as I drove the truck with the driver’s door still open and parked it back in the driveway.

Quite surprisingly, because our child tends to be rather empathetic, Hayden did not seem phased by my physical reaction to any of this.  Not even the horror most certainly visible upon my face, my sobbing, my uncontrollable shaking… nothing.  He reacted to none of it.

After we both got out of the car and our feet were safely planted on the ground, I probably pressed the lock button on the remote more times than was necessary.  At this point I could barely stumble up to our front door, let alone force Hayden to follow me, but luckily he did… without any argument. The last thing I recall before shutting the front door behind us was the neighbor next to the one whose lawn Hayden did not quite drive over—the only neighbor we do not get along with—watching us from his front steps.

I don’t recall the exact date believe it or not, but it’s because of what he said to me afterwards that I know the incident happened when Hayden was around five years old.  This was the age when his speech finally began to emerge, and prior to that he would not have been able to tell me what he did.

Once we came inside and I partially caught my breath just enough, I either asked Hayden what he was doing, thinking, or where he was going—something to that effect—but I know he strung together enough words to tell me the name of a grocery store and something about buying me chicken.  I believe it was later that morning when I was leaving for work, that I noticed some of his play money on the passenger seat. (Yes I made it to work that day, and he, to school.  I suppose continuing with usual daily routine was the only thing my brain and body were capable of that morning.)

So let me backtrack here for a second.  Our Hayden, now almost eight, who still to this day has global fine motor and gross motor delays, who still to this day needs assistance with various self-help skills, who still to this day does not yet print his full name, who still to this day does not quite know how to call someone on the phone… almost figured out how to get himself to Shoprite.  And that was two and a half years ago.

The amount of motor planning he had to accomplish to get as far as he did, is astonishing.  First, he waited until I retreated back to my bedroom to continue getting ready.  Then he had to maneuver the heavy dining chair in front of the kitchen sink.  Next, he had to climb onto it to stand up and reach the windowsill to get to my keys.   He obviously made it back down okay, left the chair out of place, but remembered to take play money out of his toy cash register.  He then proceeded to get a pair of shoes on, leave the house, and close the front door behind himself.  But that’s just the beginning.

He now had the keys and needed to figure out which tiny button would unlock the truck.  And I know he didn’t push the red one, which most children would be attracted to, because I would have heard that.  Next he had to figure out which of the various keys on my keychain is the one that goes in the ignition.  I still can’t figure out how he knew which pedals to push, or if was just sheer luck that he didn’t ram the truck head-first into the retaining wall.  But as far as the correct gear and the direction he needed to turn the wheel… well, the experts have always said these kids with Fragile X are very strong visual learners.  How many times has your child watched you do that from the back seat?

As far as his spontaneous ability to pull this off, we also know while many typical children are eagerly proud to show their skills, people with Fragile X tend to exhibit anxiety or frustration instead.  Of course it was not entirely because no one was watching that he was able to go ahead and attempt running an errand—I mean, it’s not like the child whips up a gourmet meal when I turn my head—but clearly they have more abilities than we may realize.

In addition to no longer keeping my keys on the windowsill, we have since installed extra interior locks at the top of each doorframe as well.  There are other preventative measures you can use such as an alarm system, security cameras, etc.



The Capela family, featured on a banner at the 13th International Fragile X Conference.

But I think the most important take-away is that our kids are able kids.  Well that, and not everything there is to expect will end up in a book.  But if it did, Chapter 101 should simply read: “Always remember to hide your keys in a safe place; it could save lives.”  Clearly Hayden’s life was not the only one in danger that morning.

I wish that this significant day could be remembered as more of an accomplishment versus a terrifying moment in time… and I wish that I could have told Hayden just how proud I was that he successfully attempted to accomplish something which I still can not believe I witnessed… but obviously I would never praise him under such circumstances.

The good news is there will be much better opportunities to be amazed.

And thank you, Bonnie, for allowing me the opportunity to share this story.

Fragile X Writers Series: Big Plans

Four children within five years, and three of the four have Fragile X Syndrome.  Take a moment to imagine it.

LeeAnn Taylor, the latest writer in the Fragile X Writer's series, tells the story of her family, their discovery of Fragile X, and how she accepted the changes to her life plan. 

In addition to being a mother to five children, LeeAnn is an actress, author, and producer living in Santa Clarita, California.  She has written two spiritual guide books, Magnify your Glow and Magnify your Glow for Teens, and she produced and stars in the film "Bluetiful," which exposes the largely hidden world of the disabled and those who care for them.  Her autobiography, The Fragile Face of God; A True Story About Light, Darkness, and the Hope Beyond the Veil, comes out in the spring of 2013.

LeeAnn has had the same challenges as so many of us have had, raising children with Fragile X, but she didn't let the Fragile X diagnoses of her children be a barrier when she set out to achieve her dreams.  She is an inspiration to anyone who dreams big, but has doubts and fears along the way.  Find out more about LeeAnn Taylor and her books and films at LeeAnnTaylorStory.com.

 

 

I had stars in my eyes from day one.

 

Like most girls in high school, I had plans.  Big plans.  I was fearlessly ambitious with grand visions of happiness and a successful life in the movie spotlight.  Marriage and less-than-glamorous-motherhood seemed somewhere in the far distance, undecided and inconvenient.  After graduation, I veritably bounded away from the manicured grounds of my suburban high school, armed with top honors in performing arts, and into the bold and fascinating new land of adulthood.  I was ready to take on the world.  Or so I thought.

 

After a year of film school, performing in Disney parades, and dating, I fell fast into the arms of a charming young man and was married at age 19.  Baby #1 came lightning fast!  Like my mother before me, my sisters, and my friends and neighbors, I expected parenthood to be full of bliss – an enchanting life of adorable snap-shot moments and a rite of passage into life’s noble endeavors.  And in the beginning, it was.  My new baby daughter, Jaede, was exceptional –meeting all of her milestones early and bursting with vibrant energy.  She truly inspired me and we spent hours together every day forming an unbreakable bond.

 

Jaede and Quinn

When Jaede was just 4 months old, however, I became unexpectedly pregnant again.  I began having mysterious dreams about a small boy with short blond hair and an oblong face.  He was in my womb and seemed frail, but when I tried to speak with him he looked ahead and said nothing.  I couldn’t reach him.  Nine months later I gave birth to a healthy baby boy who I named Quinn.  He was an unusual baby, as far as what I knew about babies at that time.  At 6 months old, he growled incessantly, turning his face bright red and bulging the veins in his neck.  And he played with toys by pressing them against his face and stiffening his muscles until he quivered.  He also loved to spin his toys and would watch monotonously as he spun them around and around all day.  In addition, Quinn’s gaze fluttered randomly around the room, purposefully avoiding eye contact with me.  He was a constant buzz of energy with a will like a locomotive.

 

Well-meaning family and friends assured me there was nothing to worry about, but in my heart I knew there was something very wrong. I thought maybe I wasn’t mothering him the right way.  He didn’t respond to my affection or acknowledge when I called his name.  Am I a bad mother?  I wondered.

Shale

Meanwhile, I became pregnant again.  Life was progressing at unbelievable speed.  Jaede became mama’s-little-helper; however, that precious mother-daughter time became increasingly rare and I began to feel guilty for neglecting her.  Out of necessity, most of my attention went to Quinn’s constant needs.

When Quinn was 2, we took him to a university medical center.  He was still non-verbal and exhibited many strange behaviors such as hand-flapping, rocking against the wall, and playing with his regurgitated food.  The pediatric neurologist diagnosed him with autism and ordered further testing to rule out hearing loss.  During the months that followed, I researched a variety of childhood developmental delays that can affect behaviors.  My heart did not want to believe that my child had a disability.  I searched desperately for anything that was treatable, curable, or otherwise temporary.

My son, Shale, was then born – a healthy boy with bright red hair and hazel-gray eyes.  He was much more affectionate than Quinn was and loved to cuddle with me.  Because of the differences between them, I wasn’t concerned for Shale’s development.

Our pediatric neurologist had a “hunch” about some of Quinn’s physical attributes and ordered a genetic screening for him.  At the age of 3, Quinn was officially diagnosed with Fragile X Syndrome.  I had never heard of Fragile X and there was no history of it in my family.  Things were about to change dramatically in my life. My new son, Shale, was beginning to exhibit similar behaviors.
 

A year and a half later I gave birth to another daughter, Faith, rounding out our total count to 4 children under the age of 5.  I was only 26 years old.  It was at this time that my son, Shale, tested positive for Fragile X Syndrome.  Nine months later Faith was also diagnosed.  I was devastated.
 

Faith

My husband and I made it through the dark days with a sense of humor developed out of necessity.  It was our underlying defense mechanism, our method of self-preservation, subconsciously cultivated as a means of protection against the hopelessness.  With Shale and Quinn cruising around the house in nothing but a diaper like natives in a loincloth, Faith sitting in her baby seat watching the spectacle with wide eyes, and Jaede talking away as loud as she could to compete with all the commotion, laughter was our only safeguard for sanity.  We made up all kinds of nicknames and catchphrases for our children.  To keep from going crazy, we had to mock the horrific things our sons did, the grotesque messes they made.  Toilet humor became a staple in our home, as did songs with spoofed lyrics about Quinn’s animalistic eating habits and Shale’s marathon diaper changes.  We were like the urban hillbillies of Yuppieville.
 

Everything in my life had been redefined.  In some circles, I became known as “the mother of the retarded children.”  In other circles, I was referred to as “amazing” and “remarkable.”  I would love to say that I felt amazing – or remarkable – but I didn’t.  Instead, I struggled with feeling like a failure as a mother.  I often felt like no one in the world understood what I was going through.  My husband grew distant and detached from our family’s needs.  My life’s plans seemed to disintegrate almost overnight.  Quinn’s and Shale’s behaviors eventually escalated into violent episodes, leaving me with bite marks and bruises. Even in Fragile X circles, my sons’ developmental challenges seemed unusually extreme, isolating me even further.  They both remained non-verbal and in diapers, functioning barely at the level of a 2-year-old.  Jaede grew up so fast, she became like a third parent in our home.  She struggled with anxiety and stress of her own, and felt neglected most of the time as her Fragile X siblings took priority time after time.  I simply could not meet everyone’s needs, no matter the size of my efforts.

There were nights when I felt so hopeless that I literally prayed for death.  And there were nights when I felt luminous angels surrounding me.  I felt like I was being broken down and rebuilt, one painful piece at a time, as my selfishness and short-sightedness were stripped away in the process of caring for my special needs children.  I watched a transformation take place within myself – from a young, starry-eyed girl with big plans that didn’t include compassion or courage, failures or life lessons, to a woman stronger than I ever imagined I could be.

Despite the challenges, there were truly transcendent moments during these difficult years.  One day when I was working with Faith on her speech therapy, she exclaimed, “My brother is an angel.”

Faith had no concept of what an angel was nor the vocabulary to express it.

“Your brother is Quinn,” I responded.

“Quinn is an angel,” she stated again.

“And Shale is your brother, too,” I said.  Now I was testing her, remembering back to the day when Jaede, at two years old, had said the very same thing about Quinn.

“Shale is an angel,” she replied.  My heart skipped a beat.

And then the first of many miracles happened.

I became unexpectedly pregnant with a beautiful little girl.  I named her Psalm – a sacred song – and I call her my “miracle baby” because my husband had undergone a vasectomy after we decided not to have more children.  And because Psalm does not have Fragile X syndrome.  Her presence is pure joy.  She is the perfect friend to her big sister, Faith.  And she is a blessing in the lives of everyone who knows her.

Psalm’s birth was pivotal for me.  After this event, many life-altering changes occurred including a magnificent intervention beyond the grave.  I am alive today because of it.

This year, Quinn will be 22 years old and Shale will be 20.  They both live in a professional home now, they are both still non-verbal and require 24-hour supervision.  But they are absolutely amazing and remarkable – true giants in my eyes.  I treasure them and the lessons they teach me.  My precious Faith is now 17 and has been fortunate to be only moderately affected by Fragile X Syndrome.  She reads, writes, speaks very well, and is a fantastic cook.  Jaede is studying humanitarian work and Psalm is an avid reader.  Mothering these children is the most challenging yet remarkably beautiful experience of my life, full of transcendent highs wrapped up in a series of unpredictable moments, struggles, and triumphs.

LeeAnn Taylor and her children

For a long time I believed that having disabled children would prevent the work I felt driven to do in my life, but I’ve since discovered that it was in the lowest, darkest moments with them where my life’s highest vision was born.  I still have “big plans,” but they look a little different now: I write books that inspire people, I make films about the triumphant human spirit, and I mentor people of every walk who are looking for hope.

Thank you, Quinn, Shale, and Faith, for revealing to me what I am capable of and for showing me the way.

Excerpted from The Fragile Face of God ©2013 by LeeAnn Taylor

Fragile X Writers Series - Being Holly

The Fragile X Writers Series is going to be a little less regular in the future - I have a few more writers planning to participate, but dates not set, and I would never want to stress out my talented volunteers with deadlines.....this is all for fun, and for education, and for awareness but nobody is getting paid, and no one should lose sleep over it.  Not that we Fragile X gene carriers would ever stress out over anything.  No way, right?  We're an easy-going bunch.  We take things as they come, we go with the flow.  We are chill.

 

No wait, strike all that.  Reserve it.

 

Anyway the point is, the Writers Series may not appear every single Friday, but I will still save them for Fridays, just so there's a little predictability and routine left.  This has been so wonderful, I don't want to stop.....

 

Here's a repeat guest writer, Holly - writing on the other topic choice I gave her, namely, on herself.  Who she is now and who she was before Fragile X bounded into her life.  Holly is well known in the Fragile X community, and it's hard to imagine a time when she wasn't outspoken, extroverted, and everyone's friend.  Turns out, she has struggled with anxiety and inhibitions, just like most of us.

 

 

When Bonnie asked me to write about who I was before the diagnosis, I sat down and quickly wrote something and sent if off for her to file away for when she needed it. Last night she sent it to me to read again before she published it. As I read it I realized I didn’t really answer the question she asked me to write about (she may have realized that too) so you’re getting version 2 and this time, I hope I can answer her question "Who were you before Fragile X?"

I think it’s hard for me to answer because I’m exactly the same person, there is just more to me now, and also because it’s hard to remember a time when Fragile X wasn’t a part of my life.

Looking back....
 I was quiet and shy when I was younger and while I always had friends, I never felt like I really fit in. I was happy, I had a great family, great friends and I have really wonderful memories of my childhood.

I was always the peacemaker. I hated drama, arguing and for people around me to be at ends with each other, or with me. I would do anything for anyone, whether I knew you really well or barely at all, if there was something you needed – I was the person to ask. I couldn’t say no, it hurt me to see people in need of help and not do anything and I never wanted someone to feel alone. I’ve always smiled a lot.

I was friends with everyone, even the people I was told I shouldn’t be friends with. I didn’t believe in the cool kids or not cool kids, I believed we were all the same. I was on the Pom Pom Squad (the dance team) and I loved that time. It was extremely hard for me, between remembering the sequencing of the steps and the anxiety of performing, I’m not really sure why I loved it so much but when the music played and I could dance… I was happy.

I was insecure, add that to my inability to say no and I was… an easy target.

I didn’t do great in school but I did ok – I got by with B’s well, mostly C’s. I didn’t care. I was the girl who did her homework on the bus ride to school or in the hallway before class. Math and spelling confused me and science bored me. I loved history and anything that involved essays. No matter the subject, if I could give my answer in the form of an essay – even if my answer was wrong, it would be right. If I had a penny for every time my mom told me or my teachers that I "wasn’t living up to my potential" I would still be living off the money earned for those words. She was right, though, I wasn’t. I wasn’t even trying.

I was very smart, I just couldn’t get past barriers that held me back to let it show. I had one class in high school that did a quiz game every week. We split our desks and lined up facing each other. While it was focused on current events, it covered everything. I knew most of the answers but never raised my hand. Even when I thought laser beams would shoot from my eyes in frustration with the people around me for not knowing answers, I just couldn’t bring myself to raise my hand. My teacher saw it and one week he asked to write down the answers as he asked them. When I would put my pencil down, he would ask someone for the answer, at the end of class I would turn my paper in. My answers were almost always all right but I had no explanation as to why I couldn’t raise my hand and answer them in class. I couldn’t. I didn’t want to be wrong but I also didn’t want to be right. In my mind, I couldn’t win so I just didn’t raise my hand. There were a couple of times when no one would raise their hand that he would look at me, and although I don’t know his reasoning why, would ask me even though I didn’t raise my hand. I would answer, we would move on – and thankfully (even though I felt I would) I never died from it.

I often felt on the outside looking in when it came to my friends and school. The older I got, the more I felt like I didn’t fit in. My friends were great – they still are. I have always been guarded, I just didn’t know why or what is was that kept me held back. Turns out, it’s this little thing called anxiety, it has stopped me in my tracks and taken more from me than it has given. It has always had a way of getting in the way. When you combine that with the guilt that I go through for anything from the way the wind blows to the color of my socks – it’s amazing I’ve ever left my house.

I’ve always had something I was passionate about. In March of 1991, while I was in high school, my 3 month old cousin, Brad, died of SIDS. I coped with that, the same way I coped with the Fragile X diagnosis. I read everything I could, every time I had a paper to write or speech to give in high school and college, it was on SIDS. It was how I worked through what I felt, it was important to me to get the information out and it was how I kept Brad in my life.

Then, when Parker was really little I took a 40-hour car seat technician certification class (yes, it takes 40 hours to become certified to see if someone has properly installed their car seat and we used every single hour – you would be amazed!) after my certification I pulled together and organized the first ever car seat safety check for our county.  And it was awesome!  I was that crazy lady who, if I saw you in the parking lot or store with your child in an infant carrier would tell you if the straps were not tight enough, the angle was off, or it was just all wrong. I couldn’t help it. I had become this car seat safety freak - everyone who becomes certified does, we are rather proud of it. This had become my new "thing" until Fragile X.

As a young adult, even as a young mom, I was dependent on others – and honestly, I was great with that. I was told who to vote for, what to like, what to not like and for the most part that worked just peachy for me. I had never eaten alone, traveled alone, checked into a hotel, hailed a cab or even made a reservation. And, I was very happy with this. It was scary and intimidating to me and I had no desire to do any of it alone.

To this day, I am still extremely shy and anxious. I still struggle with guilt and insecurity. I am very emotional and easily hurt. I still over think and worry more than I should. I am still the peace maker. I still hate drama, arguing and for anyone to be upset – with each other or me. Sometimes that means I apologize when I shouldn’t or back down when I should stand my ground. I still believe people are all the same, no one is better than another. I am still terrible at math and only spell decently thanks to spell check. I still love to write and have finally reached a point of sharing my writing and challenged myself to finish my book. I am still filled with a focused passion. I am, all of those things I have always been, I just keep a lot of it hidden.

I am also so much more - so, so, very much more. I am a voice. I am an advocate. I am outgoing and outspoken. I don’t believe in limitations. I welcome a good challenge. I love to reach out to people, make introductions, help guide them in the direction they need to stand strong. I love to problem solve and have my brain picked. I love to help people. I believe when you say you are going to do something, you make every effort to do it, in working hard and taking pride in the work you do. I am proud, of my family, my friends, my communities (fx and non).

I am working to be more independent each day. I travel frequently (and love it!), I can make my own reservations, check into my own hotel and hail my own cab. I still don’t like to eat alone :- )

I am open and public about many aspects of my life. And this, puts me in a position to be easily attacked and taken advantage of and that has really taken its toll. In this age of technology when we are as open as I tend to be – it’s easy for others to judge, to attack and to forget that I am… still a person. Images of my children have been taken and shared without my permission. My life has been threatened. I have been criticized for doing too much and for not doing enough. There is a human side to me. I do have feelings, I do get tired, I do not always live up to expectations. I can only spread myself so thin. This is not an "Oh poor Holly" moment, it’s a moment that I hope people will realize before jumping to make a post on Facebook to the world that they remember, I am, honestly, still human too.

I am extremely proud of the work that I do. I am happy to share select parts of my life as I know how much it would have helped me early on and does help me now. I have let the world into our lives. Thousands of people have watched my children grow. I have shared the struggles and the joys with the hope that someone can relate and our experiences will help.

To people who knew me before the diagnosis and to people who know me outside of the FX world – they get the shy, quiet, socially awkward Holly more than anything else and will argue with me that another side really does exists because it’s a very rare day that the confident side of me steps out in that world.

To the people in the Fragile X world – they will argue that I’m not capable of being shy, quiet or uninvolved – as they don’t get to see that side of me. In that world, I am always comfortable – like being at home. My anxiety, my emotion, my passion … all understood. As much of a struggle that world can be – I’m so happy to be a part of it.

I’m still not sure I answered the question… but it wouldn’t be like me if I stayed completely on topic!

Fragile X Writers Series: Fragile X Parents - We Got Skills!

Oh, boy.  Get ready.  Because this week's guest writer, Melissa Welin of Basically FX, holds nothing back!  I am in love with her take on how we, as parents of children with special needs, are completely prepared for whatever challenges a doomsday might bring.  Talk about seeing the silver lining!  I wish I'd written this, it is SO funny, but I get to do the next best thing - to post it for your reading pleasure.

 

Bonnie asked me to contribute to the Fragile X Writers series and I was so excited.  But I've been reading all the amazing contributions, and gotten progressively less so.  I was feeling the pressure to come up with something touching, inspirational, heartwarming or educational and fuh-reaking the fuck out!  Then I remembered...Bonnie knows me, she isn't expecting any of that!  Phew!  Now that the pressure is off I can finish this up and stop wrecking her editorial timeline.

Anyway, I have a topic that has been floating around in my brain for a while.  Have you seen the show "Doomsday Preppers" on NatGeo?  I'm a little obsessed with it.  The premise is that they follow these [nut jobs] well-prepared citizens as they demonstrate the steps they've taken to prepare for a worldwide "Doomsday."  They all have a different idea as to what will finally tip us over the brink but they are all convinced that we're going over.  So cheerful!

Intially I watched the show and thought, "Holy shit, we are SO going to die."  Seriously, these people devote hours and hours every day to "prepping" and here I am munching on popcorn while I watch them run around getting ready to survive the end of civilization as we know it.  Then I thought, "Meh, I need more popcorn."

After giving it some thought I realized that as parents of a child with Fragile X, we have more than enough training to kick some doomsday ass.  Really, for the last 6 years, 9 months, 1 week and a handful of days Eric and I have been in survival training 24/7, right?  Let's explore.

There are a few major areas that "Preppers" worry about...

Food & Water
Shelter
Security
The Unexpected (NatGeo refers to it as the "X factor" pretty funny, eh?)

Food & Water

We have learned through painful experience over the years to not ever, ever, under pains of running snot and melting down, run out of either snacks or drinks.  I can pack a purse with enough snacks and liquids to last for a day, give me a backpack and we are good for a week.  AND we are like squirrels, we have stashes of drinks and food all over the place.  Caleb is a tremendous help here.  Lift a pillow off the couch?  Cup of juice!  In the cabinet holding the entertainment components?  Hopefully it's a cup of water this time and not milk, that sucked.  Lift Caleb's laptop off his desk?  Chips!  Under the couch?  Cheerios!  I'm pretty sure we could feed a family of four for a year on the goldfish crackers hiding in the truck.

Shelter (This is a two-parter, you need to be able to hole up in your house *and* you need a bug out location)

One winter a few years back we stayed in the house so much that when spring rolled around Caleb cried EVERY TIME we tried to leave the house.  We can do months holed up, piece of cake.  In fact, it's sort of the preferred state for me too...there isn't much trouble with social anxiety when you play hermit!

For a bug out location...well, first, let's start with the fact that we can evacuate any place, any time.  I have left my parents' house so fast on occasion that I'm pretty sure we broke the sound barrier.  If having a child with Fragile X has taught me anything it is this, be prepared to GTFO.  Always.

As to where we can go?  Caleb has a few preferred locations and he keeps us constantly informed where those place are.  On the way to school?  He reminds us we could always go to Grammy's house!  Heading out for a day of running errands?  He never fails to let us know that Holly's house would be much preferred.  And if we are ever in doubt about how to get to either...he knows exactly which lefts, rights and exits will take us to Grammy's house (with a stop at Sonic for chicken, of course) and though Holly's house seems like it might be a little trickier, given the multiple states between us, he can get us there with one word (heard over and over and over and over these days) - "Southwest."

Security

Weaponry -- We don't do guns.  I mean we have Nerf but they don't even sting, plus we're not actually ALLOWED to fire it under pains of running snot and melting down.  The darts MUST stay loaded in the gun JUST SO at all times.  FYI, "JUST SO" is the way I loaded it when it came out of the package.  Caleb has been known to take people down with a well-aimed football or basketball to the back of the head though, so I feel pretty secure in this area.

Special training --We are parents, that's enough, isn't it?  It means we have eyes in the back of our heads and we can sniff out the difference between just passing gas and holy cwap we need to find a bathroom NOWNOWNOW.  Our well-honed senses mean there is no sneaking up on (or away from) us.  We have a child who lacks "impulse control" which means we have mad search and recover skills.  We can stop a speeding child with a grab of the collar, I don't even have to look anymore.  We can easily carry 70 lbs of "limp noodle" which is the equivalent to dead lifting approximately 800 lbs.

Security enhancements -- We have a motion sensor that flashes our bedroom lights as soon as anyone over 2 feet tall walks into the hallway.  Our sleep is so light at this point that a flashing light has us up and yelling "GET BACK IN BED NOW!" within seconds.  If I look anything like I feel at that hour, I'm guessing I can swing a pretty mean Cerberus impersonation.  Oh, also, we have that little shit of a dog who barks at his own damn farts.  No one is sneaking into, or out of, this house.

And now we get to my favorite...

The "X factor"

How do I do in a medical emergency? Broken teeth, blood draws, x-rayed extremities...please, this is just too easy. NEXT!

Communication -- After over 4 1/2 years of silence we perfected non-verbal communication.  I can tell my darling boy to STOP IT with a slash of my hand and a glare...and he listens.  We also have enough ASL skills to solve any snack or bathroom emergency from across the room.  I can also beg my husband to please, please let's go...my head is killing me.

Other skills -- They mention bartering, that's pretty much like bargaining right?  I am the queen of bargaining, "Just please, please, please stop and I will give you ANYTHING!"  "If you don't walk through that door right this second I swear I will..."  Ahem.  That's sure to be useful.

If just being a bossy and not-so-patient mom isn't effective, I'm pretty sure I have enough "on the job" experience to barter services like PT, OT, ST, potty training or educational/general developmental advice.

So, go ahead, bring on doomsday.  It's nothing we haven't dealt with already!  Anyone else want some popcorn?

Fragile X Writers Series: "When all 3 of my children have Fragile X Syndrome..."

I'm a little behind today - trying to get back into the swing of all our routines has been tough!  I know it has been challenging for today's Fragile X guest writer, too - Rachael Gibson, of the darling blog Our Life.  Rachael has - count 'em - three kids with Fragile X; two little girls and a boy.  Sometimes I get a wave of self pity and think I have a lot on my family plate.  Then I remind myself of Rachael.  Somehow she manages to make raising her three kids with Fragile X - well, not easy, but she's getting it done, and getting it done well.  And looking fabulous herself, somehow, while doing it.

By the way, visit her blog, and if you read no other posts, read this one - about the turquoise violin her son got for Christmas.  It's such a wonderful story about a family coming together to make a little boy's dream come true!

I was asked by Bonnie of Fragile X Files to write about what it is like to have all 3 of my children have Fragile X Syndrome.

This post, for some reason or another has been hard for me to wrap my mind around.

I know there are many other parents out there who have 3 children with Fragile X Syndrome.  I have met many of them.  Some of them have an easier row to hoe, it seems to me, because their girls with Fragile X don't seem to be affected and are off to college and there are some who have all boys who are more affected than our only son.  So it is hard to really put being a parent of 3 with FXS in a lumped category so I guess, really, the name of this post is "When all 3 of my children have FXS..."

In Our Life there are moments, and I have to look at them as moments because my days would seem so overwhelming and unproductive it I looked at the day as a whole... so, there are moments that are frustrating and irksome: 

Sister bounding, bouncing and rolling uncontrollably, unable to sit for an entire meal—let alone 2 bites in one sitting.

Baby not talking to me about her needs, having to pull my hand to where she wants me to be and pointing to what she needs, yet being able to sing the theme song to Scooby Doo.

 

 

Brother fighting EVERYTHING social—wanting friends but not being able to overcome his anxiety to  hang out with them in a "normal" teenage way.

The tension between Marc and I can get pretty thick just because both of us are trying so hard to keep it together when all these little things seem to be piling up in our things-that-drive-you-crazy-after-so-long basket.

It's a daunting task to not only have to make sure one child is getting all the sensory input they need but to add 2 more to that ... just... well... I fail sometimes.

It adds to the stress when your children are so active they don't even want to take time to eat and when they do you have to cater so carefully to their aversion to certain textures, appearances and tastes.  If you think it's hard to have one picky eater, times it by 3.  It's inevitable that one of those will slip through the cracks and wake up in the middle of the night because they are hungry because you weren't able to figure out enough creative things or ways for them to eat that day and they just avoided food as much as possible.

It's really tough to know that your 2 daughters are both struggling with Autism on top of Fragile X, especially when you have only met girls who have Fragile X are so high functioning, off to college or at least holding a job or able to retain friends throughout high school.  You wonder if you missed something as a parent somewhere along the way as to why your girls are so affected by Fragile X and so many girls seem to be overcoming the Syndrome.

It's so hard to see your 13 year-old son, who is wise beyond his 8-year-old mind's capacity but Anxiety consumes him and becomes his prison.  I give Anxiety a capital letter at this point because it has become his close companion.  I've always wanted my children to choose their friends wisely but this is one particular companion I wish would leave my son alone.

But, just when I get discouraged with these moments I am blessed to have the other moments.

The ones that make me laugh:

 

Like when my mom is reading a touching Christmas story to the entire family on Christmas Eve and Sister comes out in one of the hundreds of costumes hidden away in the back room and it is not just any costume, it is the four-armed purple alien costume.  She doesn't think a thing of it and plops herself down in the center of the room to listen happily.

 

 

 

Or, when Baby gets a total "kick" out of certain things someone says like "R2D2" or "Let's go Party!" and she will try so hard to repeat it to you to get you to say it again just so she can laugh hysterically and goes red in the face.

And when Brother calls my sister-in-law, Chelsea, on VOXER (it's kind of like a walkie-talkie app for the iPod and iPhone) 28 times just so she can hear him play his violin several different ways.

 

 

Oh, and I love it when all three of my kids pile up and give me huge hugs and we all giggle until our ribs hurt.

The ones that make me smile:

 

When Baby brings me a blanket and turns her back to me and stands there while I wrap her tightly and then pick her up in my arms and "squish" her.

When Sister asks, "Mommy, do you love me?" everytime she does something questionable or she can tell that I am frustrated with something.

And when Brother tells me how proud he is of himself when he has overcome his anxiety, "I did good, huh, mom?"

There are also the moments that I cry happy tears.

I am thankful for those moments, especially because there are often frustrated or sad tears shed, it is nice to have the tender tears.

These are the kind of tears that warm your cheeks and your soul.  Sometimes these tears come at the most unexpected times.  Usually, though, it is when I am with my family or close friends seeing the supports we are surrounded by, knowing that we are not alone raising 3 children with FXS.  That's when I cry those tender tears, I step back a moment to see that we are not alone in this journey and that so many people around us are waiting in the wings to buoy us up and carry us through the deep and there are still more at the shoreline to make sure we don't stumble in the sand.

 

Fragile X Writers Series - The Good News and The Bad News

First, the bad news - the Fragile X Writers Series is going the way of all the great TV sitcoms, and taking a hiatus for the holidays.  (And possibly I just haven't had time in the last week to organize it.)

The good news is, it'll return in two weeks with all new stories!

(If you have a story to tell, please email me at bkkorman @ aol . com.  This has been so wonderful, and I'm always honored and thrilled to have people interested in participating!)

Fragile X Writers Series - Is It Really The Happiest Time of Year?

I'd like to introduce you to Cindi Rogers, this week's guest Fragile X Writer.   She is a mom to two boys with Fragile X who are actually men, now - ages almost 24 and almost 22.  She is further along in her Fragile X journey than I am, and everything she says and does, I learn from.  She's stupendously innovative in her techniques and strategies for success with her Fragile X sons. 

She lectures at the International Fragile X Conferences about her philosophies and her creative routes to success in raising her boys, and she shares her experiences at her blog, Mrs. Rogers Neighborhood.  I am so, so lucky and honored to have her contributing to my blog this week!

 

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. 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. The second or third year, I decided to try a sort of "tolerance build-up" approach. I took a trip to the dollar store and bought 30 $1 nonsense things. They didn’t need to be of super high interest, but some interest would be good. Food items, small snacks, candy, Slinkies (sensory), chewy things, etc., all hit the basket. I went home and wrapped each one and placed them in a box. Beginning on the 9th of December (15 days before Christmas Eve—don’t ask me how I came up with this) we asked the boys to pick one item from the box. We allowed them to wait until they were ready, and then open it. At first we didn’t make a big deal about it. After a few days, we started to use a "side dialogue" method to encourage imitation. This involves me and Chris talking to one another, saying the things we wanted them to mimic. We would say "Thanks, Dad" or "Thanks, Mom" and giving a "high 5". I think we were starting to see improvement in the anxiety department over the simple task of opening the gifts. After about 10 days of practice, we were able to achieve the "high 5", but still no "Thanks", which was ok with us. By the time Christmas Eve arrived, there was little or no anxiety over gifts.

The following year, Chris and I decided to try and focus more on things the boys liked to do during the holiday rather than push our idea of it on them. Jake was always very frightened by the Christmas tree itself. I think the sensation of the tree’s texture gave him an extreme aversion. Therefore, he never wanted to help place the decorations on the tree. Joe is so sensitive to everything around him, that the whole radiation of stress from everyone caused him to become a seasonal monster. On numerous occasions we would hear things from the school like "oh, well, we won’t plan to start any new materials or approaches until after the holidays", or "let’s plan to get to that in January". No wonder Joe was feeling this stress—it was all around him! His own home was no exception. Both boys did seem fascinated by the numerous displays of lights that appeared everywhere this time of year. We could see that this was a constant interest area. Even the lights on the tree seemed interesting, even though we didn’t want to touch them. That seemed to be our ticket!

We had noticed a list of lights displays published in the newspaper every year, so we looked that up. We planned our path and prepared our trip. At dark on Christmas Eve we packed a thermos of hot cocoa, cups, Christmas CDs, blankets and a few diversions. We all dressed in our pajamas and loaded ourselves into the car. We traveled around the city taking in all of the spectacular lights. The evening was a success. We headed home and tucked the boys into their beds in preparation for a busy Christmas Day.

Another obstacle that we faced the following year was the constant invitations from family to attend parties. Up to this point, we had not had the best experiences. Chris was from a very large family and there was a lot of demand. Most were not extremely knowledgeable about Fragile X, and we didn’t see them often enough to really keep them in the loop. We decided to have a pot-luck party at our house, on the boys’ turf. Somewhere in the neighborhood of 50 people came. There were lots of kids, lots of noise, and lots of food (lots of smells). Overall, it went pretty well. No one cared if Joe ran around his house with no shirt on—it was his house. No one cared if the boys cried for some reason—we didn’t either. We had all we needed right at our fingertips. We learned what to do and what not to do the following year. Because we felt like it was important to include family in the boys’ lives, we made it an annual event for many years to come. As the family dwindled, we transitioned to an annual party for friends, which has become an event that we look forward to with anticipation (all of us). The boys’ are involved in the countdown and the preparations.

As the years have passed by, and our boys have grown older and more tolerant, things have greatly improved. We have created our own way of "Living the Fragile X Lifestyle" at Christmastime. We all enjoy taking our Christmas Eve carriage ride downtown to view the spectacular city lights displays. We don’t have as much family nearby, so it’s a fairly quiet evening. We still open gifts from my family and share the experience by telephone. We begin Christmas morning by opening gifts at a leisurely pace with no pressure. We continue to practice using good manners with each one. We share a specially prepared Christmas dinner with a few friends and family. The boys’ even enjoy eating "a special dinner" in the dining room, with cloth napkins placed on their laps. We’ve learned that a few high interest gift items are much more meaningful to them than the number of things they open. I have also realized that this time of year marks time for us. What I mean is that each year we sit back and say things like "Oh, remember when Jake was only as tall as the table", or "remember when they wouldn’t even sit with us at the dining table". It’s a time for reminiscing and for reflecting on how far we’ve come. That’s a gift for me.

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.

Fragile X Writers Series - Fragile X Between Sisters

This week's Fragile X Writer is an inspirational mom and blogger friend of mine - Kristie Meyer, of Life with My X Men.  Kristie and I met for the first time in Miami too, although I felt like I already knew her and her family, being a devoted follower of her blog.  Her two sons with Fragile X - Drew and Blake - are a couple of years old than Zack and AJ, so sometimes I feel like I might be reading about our own future possible experiences, our own progress and joys and challenges, when reading about Kristie's families adventures.  The following is the story of how she first found out about Fragile X.

 

 

 

I was married to Eric in May of 1999.  Six months later, I was pregnant and thrilled.  My sister, Kelly, was also pregnant at that time, about three months ahead of me.   My niece was born in April of 2000, and Drew was born in July of the same year. 



Drew

Kelly and her husband, Tony already had a son, Kyle.  He was two and a half and developmentally delayed.  He was already in early intervention services, but had no official diagnosis.  He had some disturbing behaviors like head banging and a lot of angry outbursts.  They had taken him to see many doctors and had been told that he was “too social” to be considered autistic.  Their search landed them at Cincinnati Children with Developmental Disabilities.  They did a whole workup on him, from speech evaluations to physical exam and genetic testing. 

 

A month or so after Kyle’s initial appointment, Kelly had a follow-up meeting to discuss the results of the tests.  There was a geneticist there and she told Kelly that Kyle has something called Fragile X Syndrome.  I was with her at this appointment as were Kyle and our babies.  The geneticist said that Fragile X was a genetic disorder and asked about our family.  We told her that I am Kelly’s only sibling.  She said that our babies were at risk for having this and we should have them tested as well.

 

Drew was six weeks old at the time.  We had his blood drawn and waited about six weeks for the results.  On October 27, I got a call from the geneticist’s office.  They said, “Mrs. Meyer, I am calling to inform you that your son, Andrew, has Fragile X Syndrome.”  It was the call that changed our lives.  I told Eric and cried on him.  He just held me and said we’d be okay. 

 

As it turned out, both my sister's and my new babies tested positive for Fragile X.  Telling extended family was a painful experience.  Our parents were very supportive.  My mother-in-law told me that God must have thought we were pretty special to give us such a special boy.  I knew she meant well, and now I can see that it was said in love and to comfort us, but at the time I didn’t find comfort in her words.  I didn’t really want to be chosen for this special gift.  We had extended family who said very hurtful things when they learned of it.  Thankfully, most were supportive. 

 

 A month after diagnosis, my sister and I went to a Fragile X conference in Cincinnati.  We spoke with Dr. Hagerman and she was delighted to learn of Drew’s FX diagnosis.  She said they didn’t have many infants who were diagnosed and asked if we’d participate in a research study.  We did and it was soon revealed that Drew was a mosaic of Fragile X Syndrome.  This meant that some of his cells only carried a premutation and in theory, would mean he was less affected than some kids with Fragile X. 

 

We enrolled Drew in early intervention services.  The people there were wonderful.  It was completely overwhelming to take him twice a week for early intervention, or Wee School, as it was called.  I remember telling the intervention specialist that Drew being a mosaic of Fragile X would hopefully mean he wouldn’t ever be classified as mentally retarded.  She smiled at me and said, “That is great.  I hope you are right.”  As it turns out, I wasn’t right.  Drew is pretty significantly impaired by Fragile X.  But I think I needed to hang onto the idea that he might not be too affected to deal with it at the time. 



Kristie and Blake

Almost three years later, we had Blake.  He was not planned by us.  He was, however, planned by God.  We thought we would be doing Drew a favor by not having any more children.  We wanted to focus our attention on him and give him everything he needed.  But God knew Drew needed a playmate--someone who was more outgoing than him and would draw him into new experiences.  Blake also has Fragile X Syndrome.  We received his diagnosis when he was about six months old.  We were participating in a research study with Drew at the time and when Blake was born, we had him tested as part of the study.  We weren’t too surprised with the results and enrolled him in early intervention services right away. 

 

Now, it is twelve and a half years later and we are doing very well.  I am not going to say that it has been easy.  It has not.  But it has been an experience that has bonded us together and has built our faith in God.  Eric and I know we would not be where we are today without the Lord’s help.  We are teaching our boys to love Him, too. 

 

A Fragile X diagnosis caused us to change our dreams and expectations.  There are still tears sometimes, but what we have is a rich life full of love and laughter.