Saturday, August 9, 2014

Who's watching?

Last night, I got something completely unexpected.  Just as I was about to close down my computer and go to bed, I received a message on facebook from a friend from highschool.  It's one of those messages that completely catches you off guard, leaves you stumped, makes you reevaluate everything you've ever done.

And leaves you with a permi-smile.

What I received last night was a compliment to the Nth degree.  I was informed that she was thinking of my family and me, followed by an incredible compliment that I would have never expected.  I feel as though I do what I can for my family and nothing I do is special.  I never think twice about the impact of my actions or words when those are a part of my every day routine.  (I do, however, fret infinitely if I do something out of character that could have possibly hurt someone.)  And believe me, when I do something that upsets someone else, it's instantly pointed out to me.

You see, everything we do in life is noticed by someone.  We may not even realize it.  Whether what we are doing is something positive (volunteering your time, being nice to total strangers) or something negative (ignoring people as we sit with our noses in our phones, yelling at someone in customer service), there is at least one person who is taking note.

The problem is, as was pointed out last night, we don't always realize that people are watching.  We don't always realize that what we do matters.  Our lives are inundated with negatives - others pointing out what we're doing wrong, complaining about how someone hurt their feelings or don't know what they're doing, etc.  She pointed out to me that, "nowadays, people are quick to point out others flaws and forget to appreciate."  The words that preceded this thought are words that will stick with me. Probably forever. 

What I was taught last night by the words my friend feared would "sound weird" was that it feels awesome to be complimented.  

The mere fact that her fear was about sounding weird for issuing words of affirmation of something I do, or offering a positive view of how my actions are received is disheartening.  Shouldn't this be the norm?  The standard by which we should all strive to live?  So, while she was telling me positive things, making me tear up a little and smile a lot, she was also teaching me  lesson.

It is important how you treat people and how you live your life.  It is REALLY important what you choose to point out to others.  What you say CAN make or break someone. 

So my challenge to you is to go out and let someone know how they inspire you.  Tell someone something positive.  Ignore the negative!  Catch a glimpse of that silver lining and shout it to the world.  

Go out and SAY The GOOD!

Sunday, June 22, 2014

Just making it worse

The last few days have been ... trying to say the least.  And I'm exhausted, emotionally and physically.

Ten days ago, we took L to the doctor to try and get her prescription changed. She was on Prozac to help with her anxiety, but it was making her aggressive when she was in melt-down mode, which was pretty often. It got to the point where she would slap at my face, grab Oma's nose hard, hit or bite herself, etc.

I think I'd take that over what we've experienced for the last few days.

We weaned her off of the Prozac over a week's period.  Then, we started a new pill that was supposed to help calm her down, help her control her impulses, etc. Everything has been completely opposite.

The new medicine makes her hyper. Bouncing off the walls. Unable to sleep. OR whiny, inconsolable, perseverating on things that aren't an issue.  Nothing in between.  And it's been a nightmare.

I can fully understand why couples with a special needs child have such a high rate of divorce. This has been an extremely stressful last few days.  I'm too tough, he's too lenient. I cover my ears and walk out of the room, he sits with her trying to get her to talk it out.  He says I don't handle it well, I get mad at him. Seems about right, doesn't it?

We came home from church today and listened to L whine at the people who were "laughing at her" (no one was), or crying about her hair band disappearing (she yanked it out), or not wanting to go to the doctor (which she started joking about just a few minutes earlier) the whole ride home. I told the "people" to quit laughing at L!  She got upset with me b/c I scared her. I put her hair up in a new hair band, she pulled it back out. We confirmed over and over again that there was no doctor, she didn't hear us.

I sat in the back seat crying from complete helplessness.

Shannon couldn't get out of the car fast enough when we got home. He ran to L's side of the car and got her out as quickly as he could and just sat on the porch with her trying to help bring her back.

After she went inside and started banging on the drums, I sat on the porch with Shan trying to figure out where to go from here. I feel like every decision we make is the wrong one. I'm tired of trying new drug after new drug to only get worse and worse results.

As her parents, we're supposed to be able to help her, to do what's right for her, and I feel like we're just making it worse. I can't seem to make anything better for her and there is not enough preparation in the world to keep her from having a meltdown.

For now, we sit on our respective couches, noses in our computers, trying to get as "far away" from it as we can. We need to reorganize our thoughts, get a new game plan, and call the doctor in the morning.

Tonight, however, I'm just hoping she goes to sleep.

Before midnight.

That'd be nice.

Sunday, June 15, 2014

This is NOT what I signed up for...

Shannon highjacked the blog... AGAIN!

I did not sign up to be the father to a Special Needs child, especially one with some disorder I had never heard of before.
I did not sign up to be the father to two girls.
Somewhere along the way, God must have gotten it wrong.

The way it was supposed to work was that my firstborn would be a boy. My son would be the sports star that I so desperately wanted to be growing up. He would never be the quarterback though, he was too talented to JUST be the quarterback. He was more of a power receiver on offense and a devastating linebacker on defense. Undoubtedly the 2nd Baseman on the diamond and the best 6th man small forward that anyone had seen in a long time. That is the son I signed up for.
 Between two and five years after my son was born, my daughter would be born. Like her brother, she would be very talented in her own right. She would have a love of sports, especially softball... and she would be an equally good 2nd Baseman. More so, she would be beautiful. Not that stuck up, popular girl clique kind of beautiful... rather the type that is just genuinely, girl-next-door, sweet as pie beautiful. She would have a mighty protector of a brother, but would rarely need him. She could fight her own battles when needed.

THAT is the fatherhood that I signed up for. What I got was not even close.

What I got was something so frustrating that I often wonder if I am doing anything right by them. What I got was exhaustion beyond my wildest imagination. What I got...

was so much more than I could have ever imagined. 

I have the two most amazing daughters, perhaps ever.
 Lauren has Fragile X Syndrome and this causes a severe amount of frustration for Rachelle and me... but nothing compared to what it does to Lauren, yet she handles it with such decorum.
 Kristen does not get the fairest lot in life because she, so often, has to fulfill the role of 'big sister' to Lauren.
 Despite the, not so fair, hand they were dealt the love that they show to one another, to us, to everyone around them was unfathomable to me for so many years. Never did I know that two young girls could have such an impact on their community as Lauren and Kristen have had in their short lives. Ask anyone, and they will likely tell you that they "don't know what it is, but (they) just LOVE those girls..."
 They have forgiveness in their hearts, love in their souls, and grace in every fiber of their being.

Sure, I might be a little biased. Perhaps I wear my blinders a little too tight... but no matter. I would be ignorant to say that they are PERFECT, but they are darn sure close (most of the time). There are times that they are vile little turds whose apparent mission is to bring hurricane-like destruction to anything and everything in their path. I attribute that side of their personality to revenge for my childhood. They say your children are twice as bad as you were growing up... I'd say my kids are equal in the turd department. But I could not hold a candle to their wonderful side.

As I sit here on this Father's Day, alone in the living room while everyone else lays down for a nap, all I want is to lay down as well, but not before I finish this... I am in a peaceful bliss knowing that my God knew exactly what he was doing when he blessed me with two daughters. Two very special souls who invent new ways to fill my heart with love every day.

I am blessed beyond measure, even if it not what I signed up for.

Tuesday, May 27, 2014

Becoming Mrs. Rogers


In every position you are in in life, there is someone you must lean on, someone you must run to for advice, someone you need. I've found myself in that position many times over the last 6 years since L's diagnosis with Fragile X Syndrome.

In that regard, I've been blessed with many friends who have become more like family to me. I know that, no matter what the situation is, I can turn to them for advice, use their knowledge, or just vent to them.

One in particular is Mrs. Cindi Rogers. She has been there for me in many of my darkest times, including the time my heater went out and my husband was deployed. She called me all the way from Colorado, handed the phone to Chris, and helped the girls and me stay warm during a south Texas cold front. More importantly, though, Cindi has helped me through many of our Fragile X issues, the latest of which was our potty-training saga. I received some of the best tips from her and am proud to say that, after 6 1/2 years, my daughter finally had success on the toilet.

Having been there and done that, fighting her own battles with overcoming FX issues, and continuing to learn through the years, Cindi has done what I have only dreamed of doing. She has put it all down on paper!

We are so excited to announce that Cindi Rogers first book, Becoming Mrs. Rogers is now available on Amazon.com at the link below. This book was a labor of love for Cindi, as well as her husband, Chris. The process has been a wonderful learning experience and going forward will continue to require more learning.




This book is a memoir of sorts about her life (and Chris') in dealing with the birth and subsequent diagnosis of fragile X syndrome for their two boys. The timeline travels from birth to present day and covers a lot of different issues like school, behavior, therapies and day-to-day life. It will take you through some downs and eventually some ups, only to come out with moments of joy and hope. "It was an emotional journey for me while writing it, for Chris while reading it, and we hope for you, too", says Cindi. 

Becoming Mrs. Rogers is the true and heart-felt story of one couple’s journey into acceptance following a devastating genetic diagnosis for both of their sons. Their story, its highs and lows entwined with its wisdom and compassion, has been a beacon of hope for thousands of families struggling with fragile X and other autism spectrum disorders.

Fragile X is a common and inherited cause of learning difficulties, affecting a child's entire world, including social and behavioral problems as well as cognition and speech. Rogers not only tells her story, but also gives advice for new parents, sharing facts about…

* the physical and behavioral characteristics of Fragile X
* the effects of Fragile X on learning, functioning and daily activities
* medication and therapy
* how fragile X affects the family.

Cindi Rogers and her husband, Chris, share their perspectives and tools they embraced in order to help their boys be as happy and independent as they can possibly be. It is a story of challenges, tears, joy and hope.



We also hope that you might consider reading it, and/or sharing it (forward this blog if you'd like) with others in your life that might benefit from such a story.

**A portion of the proceeds of this book are donated to the Rogers Neighborhood FX Family Fund which in turn offers scholarships to the NFXF International bi-yearly FX Conferences.**

------------------------------------------
Cindi Rogers is the mother of two sons, ages 23 and 25, who are affected with fragile X syndrome and autism. Since receiving this diagnosis, Cindi has become a leader and symbol of hope within the fragile X community. Her positive attitude, creativity and defining can-do attitude has inspired families and professionals worldwide. Cindi and her family have traveled to conferences around the world to present her innovative strategies, helping families not only to live with fragile X, but to also thrive. It has become her personal mission to share techniques to help families generate ideas that they can implement in their own world, while helping their children with fragile X syndrome to live happier, more independent lives. Today, Cindi serves on the board of directors for Developmental FX in Denver, a non-profit that helps families just like hers learn to thrive in the face of fragile X syndrome. She lives and works with her husband and two sons in Littleton, Colorado, and together they love travelling the U.S. in their RV named Rocket.

Connect with Cindi:
Facebook- https://m.facebook.com/profile.php?id=1302335567
Twitter- @MrsRogers2014
Rogers Neighborhood FX Family Fund--http://www.rogersneighborhoodfxfamilyfund.com
Blog- http://welcometothefragilexneighborhood.blogspot.com/

Monday, April 28, 2014

Too much?

Sometimes, I wonder if I put too much on the shoulders of my little one. K is 5 years old.  She is rambunctious. She is energetic. She is smart.

On many days, she is my saving grace.

L is 7, two years older than K.  Yet, I find myself asking K for help with L, probably more often than I should.  Tonight was a perfect example.

We went to eat dinner at Texas Roadhouse.  They were not on a wait, so we were seated immediately.  L, however, is used to waiting when we go there, so she sat on the little wooden bench, determined to wait until it was our turn.  No prodding would make her budge.  K and Shannon walked to the table while I went to sit with L and wait.  Once she had determined an appropriate amount of time had passed, we got up and were kindly escorted by another hostess to our table.

Once we sat down, L grabbed her kid's menu, which was folded in an unnecessarily-difficult-to-open-even-as-an-adult fashion, and managed to rip it. Into many, many pieces. As I could see the impending doom setting into her eyes, the first sign of a meltdown, I quickly asked K if L could have her (un-ripped) kid's menu.

She politely obliged.

L was mostly satisfied with the "new" menu while K began opening up some peanuts and handing them to her sister to help bring her all the way back to us.

Why is it that I feel it's okay to ask my 5 year old to give up something of her own to prevent my 7 year old from meltdown central?  I know that K can handle it, and she does a fantastic job of "understanding" the situation, but is it fair to her?

I know that we've talked with K about Fragile X and what it means for her sister, what it means for our family, and what it means for her.  But, at times, I feel I'm asking her to bear too much of a burden for such a young child.

And then I feel guilty.

It's not that I allow L to get away with anything.  I don't give in to her every whim.  I don't make K give up everything all the time.  I really don't.  I try to be a fair parent.  But when those moments happen, and we are in public, and I can just sense that things are not going well, my first knee-jerk reaction is to make a request of my younger daughter that will appease the older.  And I feel I am stealing a piece of her every time I do it.

It should be noted that I acknowledge her big heart. I thank her for her assistance. I try to replace the object denied or the time given up as quickly as possible.  But do these things really make up for asking so much of my baby girl?  Does me asking this of her make her feel less important? Less deserving?

Less loved?

It is in these moments that I see two beautiful girls, both affected by Fragile X, but in completely different ways.  And it is in these moments that I want to take Fragile X, ring its neck, rip it to shreds, and throw it into a black hole.

And it is in these moments that I realize that I am so lucky to have both of my beautiful daughters who teach me every day what true love is.


Updated to add a response one of Shannon's dear childhood friends posted.  It gives me a sense of comfort.  Thank you, Tara.

Friday, January 17, 2014

Transitions

Every day, I wonder, "what is up with her!?"  I have found that I have to walk L through every single step of her day.  "Put your panties on. Put your pants on. Put your socks on. Left foot. Right foot. Put your shirt on." I used to be able to say, "get dressed".  What happened!?

What happened?  Really? I have to ask that question, knowing everything that has happened in the past several months?  Come on, mom. Use your noggin.

Our lives have been in the state of constant transitions here lately.  My mom moved in with us back in May.  Around that same time, my husband got orders for deployment to the desert, effective date of October.  There were to be many changes to go through.  And then some ....

My sister needed some assistance with her office until she could get a vacant position filled. My mom went up there to help, and just a few weeks before she was scheduled to be back home with us, they were involved in a terrible accident.  So, while Daddy was going back and forth to training, we were preparing to have Oma home, only to be delayed in that expected outcome.

If you know anything about children, especially children with Fragile X, you know how much preparation goes in to anything. You have to mark calendars, put up schedules, talk with them, do countdowns.  All of these preparations came to a halt and were reversed, which makes for a not-easy discussion with your FX'er.  She didn't understand.  But the calendar said Oma would be home today! Why is Oma not home?

We had to take an unplanned trip to Abilene to see my sister and my mom.  We come home, and Daddy leaves for 2 weeks of training.  Daddy comes home for a few weeks, then he leaves for his deployment.  Oma comes home in a wheelchair then leaves for follow-up appointments then comes home, etc.

Meanwhile, during all of this back and forth commotion, L changed day cares, started back to school, started swimming lessons, had to change swimming coaches, and is about to begin taking drum lessons.

How could I possibly wonder why L is having such a difficult time?  Her life is nothing BUT transitions!!! She has, in reality, handled them all very well, all things considered.  Her meltdowns are more frequent and more intense.  She has gotten physically aggressive with me at times.  But, things could be so much worse.

I am proud of my girls.  While their lives are ever changing, they have stuck together and remained positive.  They support each other and encourage each other.  I just wish I could make it all easier for them. And I wish I could make their lives more stable, with less transitions.

In the meantime, however, we will continue to build schedules and verbally cue L to put on her socks. Left sock. Right sock. Good job.

Friday, June 7, 2013

And So It Begins . . .

Picture it:  L. October, 2012.  Birthday party of a friend. Lots of people. Lots of noise.  People she knows. People she doesn't.  10 mg of STX-209 in her system twice a day.  Here she is swinging at the piñata anticipating the goodies that will come pouring out once it's broken.  (Look at her stance. You just KNOW she's gonna knock the schnockers out of it!)

 

Picture it:  L. June, 2013.  School party with her classmates.  Lots of people. Lots of noise.  People she knows.  0 mg of STX-209 in her system.  Notice the lack of picture below of her swinging at the piñata?  That's because she didn't. Not today.

All she talked about all week was the "pick-a-nic" at the park on Friday!  She was so excited. 

I was already sitting in the pick-up line at the school when L's class was walking back from the park, ready to end their last day of school.  I knew things didn't go well when I saw her walking, holding her teacher's hand with headphones on her ears.  <sigh>  I wonder what triggered her . . .

She goes through the school, gets her backpack, and I wait.  Her aide came to my car and said L was in the nurse's office because she melted down after a mosquito bit her.  They could not calm her down while at the park until they promised her she could go to the nurse when they got back to school.  So, I waited.

L finally comes out of the school, still holding teacher's hand, still wearing the headphones.  I was informed that the park trip was not successful, but she made it through.  I asked L how today was and she said, "fine".  I asked if she hit the piñata and she said, "all the kids wanted to". 

I said, "I know. Did you get to?" 
L: "no". 
Me: "why not? Too many kids? Did it break before it was your turn?" 
L: "NO!  I COULDN'T DO IT!!!!!" 

My heart dropped.  My baby girl was so upset that she couldn't do it.  I could picture it in my head:  it's her turn.  She steps up to take the stick and her body freezes.  Everyone's encouraging her.  She throws herself on the ground and says, "I can't!"  Then, she starts grunting, hitting herself, possibly biting herself because she really WANTS to do it, but she can not make her body do what her will wants.  I see her teacher picking her up off the ground, walking away from everybody, and wiping her tears.  I can picture L's breathing getting slower as her body starts to relax again and the anxiety attack fades.  I see her finally walking back to the piñata and slowly pick up a few pieces of candy from the ground, because that's all that's left by the time she's able to move again.

I had to fight back tears on the drive home.  It made me remember last night when she was getting ready for bed. She took the rubber-band out of her hair and it fell. She couldn't find it and became upset.  I was in the kitchen not watching too much what was going on, but her daddy was trying to console her, let her know it would be okay.  I walk by them to head to another room when I saw it.  L hit her daddy in the face.  It was a hit of frustration, agitation.  I know she didn't know what she was doing or why she was doing it, but seeing her hit him shook me.  I have not seen that kind of action from my baby girl before. 

I know there are some who feel fighting the drug companies is not the way to go.  I know that the trial drug did not "succeed" in the written goal.  I also know that my child was changed.  It wasn't a placebo affect.  The medicine was genuine and true and gave me the daughter I know L is. 

Now that the medicine is out of her system, MY L is gone.  It's only been 2 weeks since she titrated down.  It's only been 30 hours since she took her last pill.  I've already seen more meltdowns, more fits, more "I can'ts", more hitting, and more biting attempts than I saw in the last year combined. 

I am sad beyond belief, for her, for her sister, for their daddy.  I know it will all be well in the end, but now it's MY turn to grieve.  I haven't truly done so yet because I always knew there would be a way to make things better.  For the time being, however, the struggles will return.  We will once again have to plan for every possible scenario to help prevent meltdowns.  We will once again sit as close to the exits as we can so we can make our quick getaways.  We will once again have to rearrange our lives to make L as comfortable and "safe" as we can. 

And I'm going to have to be okay with that . . . .for now.