Fragile X Awareness Day

Today is Fragile X Awareness day. Our goal today (and every day) is to make just one more person aware of Fragile X and what it means. I can give you all of the medical jargon and stats, but I want it to be more personal today. I want you to know not just the numbers, but the effect it has in our homes.

Our lives are filled with IEPs and ARDs, Occupational, Physical, and Speech Therapists. There's the pediatrician, neurologist, ENT, developmental specialist, and mental health doctors, too. Our daughter's teachers become our friends; we spend so much time communicating with them throughout the years, it's inevitable. And homework is a nightmare we avoid at all costs.

We have headphones and chewies for emergency situations, and can never go anywhere without food in our pockets. There's always a Plan B which may go into effect at any given moment and we know the best way to make an "emergency exit" no matter where we're at. To-go boxes are our friends, and the playground is our savior.

We have learned the art of deep pressure massage, brushing of limbs, and de-escalating meltdowns. We can tell the difference between a lack of desire and an inability to control the body to do what needs to be done. We don't make plans too far into the future, because we don't know what to expect from one day to the next. But any plans we do make need to be marked on the calendar, discussed in our home, and be flexible to allow for moments of deep breathing and dug-in feet.

Much of our time is spent reassuring our daughter that we love her. She perseverates on the unknowns, the what-ifs, and the potential bad. Her anxiety stalls her and we are constantly put into the position of knowing when to push and when to hold back. Forcing her into a situation can either prove to be exhilarating (like the time we made her ride the water tube ride) or a disaster (like the meltdown that happened after we made her swing at the piñata and it didn't break).

If we're not assisting our Fragile X daughter with these things, we are explaining the "unfairness" of it all to her younger sister. We have to discuss with her why she has a larger share of the workload. We have to solve equations of what she's capable of versus what her sister can do versus the total amount to be done, and how much slack we, as the parents, have to pick up in order to not stifle the spirit of our youngest.

Our lives are filled with brainstorming ideas for how to handle situations we may come across. When she turns 16, she won't be getting her driver's license. When she turns 18, she'll question why her younger sister is driving and she isn't. How will we explain that? When our youngest is older and meets the man of her dreams, gets married, and has children of her own ... what will that look like for our Fragile X daughter? How will we help her? What will our role be in 10 years, 20 years, forever?

What we DO know is that we spend a lot of our time trying to educate people about Fragile X. We talk about it to everyone we meet, trying to figure out a way to sneak it into a conversation. We go to Washington, DC to talk with our representatives and request continued funding for studies and research. We enroll our children into drug trials, brain studies, and speech and language development studies. Fragile X Awareness walks are held all over the country and conferences are attended by families from around the world.

What we DO know is that, while Fragile X sucks, we wouldn't trade our daughter for anything. We do what we can to decrease her struggles. We pray for a drug to help her to function to the best of her ability. We seek for ways to make her life easier. And we continually spread the word about Fragile X.

If you would like more information, please visit the National Fragile X Foundation or the FRAXA Research Foundation

Defeated

Do you ever feel just absolutely defeated? Drained. Done.

That is the way my life feels right now. I have no control over anything. I can't sleep. I stay tired. I have no energy. I have pain in various parts of my body that I can't help. And if it doesn't hurt, it goes numb.

I have been to doctor after doctor and taken test after test. I have been a pin cushion. I have given pints of blood. I have had electrode stimulation and x-rays and MRIs. I've been pushed and prodded. I've been stuck with needles and left with bruises. Physical therapy? Yup. Drugs? Yup. Cortisone shots? Yup.

Anything helped? Nope.

So, every day, I wake up just hoping for a good day. One that I can get through without wanting to cry. Without needing to take more Tylenol, Advil, Ibuprofen, whatever gets me through the day. I go days without taking anything because I know my kidneys need the break, not because I don't need the pain relief. Those days are the worst.

Then I go to bed praying to be able to sleep. I try to get my brain to stop and my body to relax. I finally fall asleep only to be woken back up by a numb hand, a hurting shoulder, a back that resists movement. I wake up hours before my alarm clock hoping to just be able to go to sleep again.

About twice a month I find myself letting my coworkers know I will "be late to work" because I have to sleep in or I won't be able to function. The guilt associated with that weighs me down, but I know that it's the only way my body can handle just one more day.

Most of the time on my way to work, as I have time to think, I fight back the tears that develop as I realize that I am not in control. Doctors can't seem to figure out what's causing the pain, but I know it's there. Medicines don't help and most wind up making me sick. I have no control. I am at a loss.

I feel defeated.

Sing ye, oh Little Monkeys!

I try to let L do as many "normal" things as possible. One of the things I've allowed this year is riding the bus to and from school. She was excited at the prospect of it and seems to really enjoy it. I did not, however, think about the possible repercussions of this new-found freedom.

How did I not think this would be an issue? How many videos have I posted on my Facebook page of her doing this? How many times have I made comments regarding this?

What is this?

Singing!

Non-stop singing. She's been singing "5 Little Monkeys Jumping on the Bed" for at least 3 years now. Her latest obsession is "Sweet Child of Mine" by Guns and Roses, but she always throws the monkeys in for good measure. But regardless of the song, it's a non-stop sound track for her life.

During the first week of school, K got off the bus and said, "Mommy, the boys asked me to make L stop singing and rocking."  I told her I would talk to L and for K to just be strong. I talked with L.

Last week a kid, as he was getting on the bus, looked at me and asked if I could make her stop singing. I just stared at him as he got on the bus, my tongue tied. I talked with L again.

Today, a different kid looked straight at L and said, "Can you please not sing on the bus? It's annoying."

My first instinct is, naturally, to protect my kids, so I immediately snap at him, "No, she can't." I mean, I think I snapped. Maybe I didn't, but I know internally I did. He just kinda looked at me like I was joking, so I repeated, "She can't. She can't help it. I know it's annoying, but she can't control it." Thank goodness another mom was at the bus stop. She looked at him and said, "Some people's brains just work a little differently", which he seemed to understand. Even after saying that, though, I talked with L. Again.

The mom and I just met this year, at the bus stop, but she seems to "get it", as we talk a lot in the short amount of time that we wait for the bus. And I appreciate her for it. When it's your kid that's put on the spot, your brain kinda shuts down and your emotions take over. In my case, that means I can't express things the way I should be able to. I can't explain to the kids that L just isn't capable of controlling her volume or her vocals or her rocking. She helps me talk my way through it once the kids are safely on the bus. But that doesn't mean I stop thinking about it.

As I was driving to work, I was trying to think of ways to "fix" this. I could do headphones with an ipod, but she'd sing right over it. And probably lose it. I could make her stop riding the bus, but that's not convenient or fair. I could ask if she can ride the special needs bus, but that would put my kids at 2 different bus stops on different schedules. I could hold a neighborhood meeting explaining L to the other kids. I could ...

Who knows what I could do?

Oh, I got it! I will teach all of them the words to 5 Little Monkeys!!!!

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!

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.

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.

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.**

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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/