Spreading the (Fragile X) word at an autism event

Last Saturday, a few of us from the Fragile X of Minnesota group manned a booth at an autism activities exhibit here in the south metro, to spread awareness about Fragile X and its connection to autism.

I've attended this event for the past several years but this is the first time we've had a Fragile X booth there. And this year wasn't as busy as I've seen it.  At no time was there ever anything you could call a "crowd."

But, we did get to talk to lots of people about Fragile X.  I had 25 copies of handouts of tips especially for educators working with children with Fragile X, and only came back home with two of them.  23 people who work with kids with special needs were interested enough in Fragile X to read up on it.  Others who'd never heard of it, now have.

 

Directly across from our booth was the booth for disability services for our county, and they came over to see our information, too.  They took a brochure and we chatted extensively.  Zack and AJ's preschool teacher and their current teacher are two of the organizers of this event.

My group of Minnesota moms and a dad and a grandma and a couple of sisters had a great time volunteering there, meeting people, passing on our vast knowledge, showing off our pictures.  When there wasn't anyone there to talk to about Fragile X, we chatted amongst ourselves.

We have such amazing moms, dads, sisters, brothers, grandparents, and friends of people with Fragile X in Minnesota.  Over and over, I'm touched and thrilled by their enthusiasm and their loving, giving hearts.

I'll tell you this.  Fragile X, as a whole, is devastating, but it has brought the most wonderful people into my life.  This picture is just a few of them.

STX209 Drug Trial Update

We have been involved in the extension of the drug study for a year now.

I've gone back and forth as to whether I thought the drug was benefitting the boys.

From September 2011 to December 2011, we did the drug trial.  We didn't know whether they were on the drug or the placebo, or some combination of both.  We thought we saw some changes, but it was tough to tell, really.

As soon as the trial was over we were eligible for the extension.  This meant that we knew we'd be giving the boys the medication.  No more wondering.  No more guessing.

We started at a low dose and worked our way up a bit.  We knew instantly when the dose was too high.  Zack got very manic, and even more impulsive and aggressive than before.  AJ became dramatic and sad.  He would cry and cry, for no apparent reason.  So we lowered their dosages, and things evened out nicely.

Now they've been on the same dosages since last June.  Six months.  Twelve total months on the medication.

And while there are several things we could point to as probable causes, life with the boys is definitely easier.

AJ talks constantly.  A lot of it is scripted (chanting and repeating words and phrases he's heard in his favorite shows), but he's obviously very happily rehearsing away.  And he sings.  He can't carry a tune to save his life, but he's a crooner, no doubt about it.  He is loud and proud.

Last night I was heading upstairs, calling to him to follow me and he replied "I coming, mom!"

And I smile to myself because it's so darn adorable that he answers me like a completely typical kid, but I don't write it down or call Mark to tell him right away.  Know why?  Because it's not actually that unusual anymore.

Zack has shown signs of maturity and growth too.  He hugs more readily.  He makes eye contact and asks nicely for things he wants. Zack has always been the one who's harder to reach; the more autistic one. He's emerging from that autistic shell though, and showing us his sweet side.

Both of them still watch too much TV and DVDs and You Tube on the iPads, but they are also more involved in real life than they were before.  The screens serve as an escape that they still need, but we can leave the screens behind more easily than before.

This past Christmas both boys were able to spend time with extended family without getting too hyperarroused.  We noticed this on the surface, but we also noticed that Mark and I both felt like we could spend time with the grown ups, just checking in with the kids occasionally.  We didn't have to supervise quite as closely. 

It's hard to put a label on what, exactly, is different.  It's an overall sense that the boys are more apt to behave appropriately.

The last month or so though, we have noticed some of Zack's less desirable behaviors returning.  He's been letting out little screams to express his frustration, instead of using words.  Once in awhile at school, he's pinched some of his helpers.

He's also put on probably 15 pounds in the past year.  He's a big chunk of a boy.

It's something we will talk about at our next doctor visit.  But after much back and forth, hemming and hawing, tettering and tottering over the past year whenever someone would ask how we feel the boys are doing on the trial, I feel I can finally say it's been wonderfully beneficial.  They are changed boys.

10

10 years ago, back when Aliza was a just a little blob of pinkish flesh, we were so unsure of ourselves. 

You assume when you are expecting, because you've read Drs. Spock and Sears, that you'll know what to do and you won't have any trouble keeping your baby alive.  Then, they pop out and you see their little noses, breathing in air for the first time, and you marvel at the miracle that this little blob of flesh just knows what to do, to survive.  You watch them in wonderment, as they start doing all the things humans need to do, just by instinct.  You see the fragility of this life you are now responsible for, 24/7/365, for-the-rest-of-your-life.  You wonder whether you are up to the task.

We wondered whether we would ever have the nerve to stick a thermometer in her butt.

It's just awe inspiring, to look at a baby face and know the girl she has grown into.  Look at that little happy grin.  This was 10 years ago now.  Forever ago and at the same time, the blink of an eye.

I remember looking into her eyes when she was an infant, wondering at the child she'd become.  The person.

I don't know for sure how other parents feel, but we've never stopped marveling about that.

(Sorry for the blurry, distant shots.  My phone tries its best, and so does my good camera.)

And that is about all the reflection I have time for today.  Aliza has transitioned smoothly to double digits.

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!

Madness on Monday, or This Is My Life

(Pretend it's still Monday night. Trying to write this, I was interrupted about a dozen times last night until I finally passed out, iPad in hand.)

Today I was driven nearly mad - mad, I tell you.

Aliza came home from school sick and tired.   Too sick and tired for dance lessons and basketball practice. I fed her and comforted her but she was certain she could not make it.  Well, I told her, she could skip dance, as long as she started homework immediately and then tolerated me tucking her tightly into bed by 7.  Somehow she summoned the strength to put on her leotard and leg warmers, and I assured her she'd feel better once she stretched out and warmed up in ballet.

The boys and I dropped her off and came home and I opted for the easiest dinner - popcorn chicken.   I popped it into the oven and we hung out for a bit.

While the chicken baked, I brought the boys upstairs for potty time and jammies, and was too late with Zack.   He had a desperately bad poop situation, which required considerable bath time.   What I thought was going to be a 5 minute changing into jammies became a half hour depooping and freshening in the bathtub.

I had Zack out of the tub, dried, lotioned and dressed before I remembered the chicken.   Burned it.  Blackened popcorn chicken.

So I whipped up a couple peanut butter sandwiches - the second easiest dinner, and much quicker than making more chicken.   I cut the finished PBJs into bite sized squares, slid them onto a plate, and then straight onto the floor.

Now you might be a believer in the 5 second rule, but I've been schooled on that.   If a piece of food falls onto an influenza germ on the floor, it's not going to take 5 seconds for that germ to become best friends with your food.

Now I picture that little flu germ, wrapping itself around my sandwich.   In my mind, it's tiny but neon green, and pulsing.

Anyway so yeah, I threw that right out.   And I mean, I threw them.   Because I was now on the edge of sanity.

Managed to knock out a couple more sandwiches without dropping them.  Mark got home from work and I left to pick Aliza up at dance.

"You were wrong. I didn't feel better after I warmed up. I felt sick the whole time."  Aliza claimed. "I threw up in my mouth like 3 times."

I was chastised.   So I told her how much fun my night had been.   She sympathized.

We walked into the house and she said, "Oh yeah, I can smell it."

"The poop?"  I asked incredulously, because what she should be smelling is Lysol and Clorox wipes.

"No, the burnt chicken," she declared.

Later on, as I kissed Aliza goodnight, she asked, "Do I have to go to school tomorrow?   Because I threw up in my mouth like 4 or 5 times."

Lord, give me strength!

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?

"Can people with Fragile X live a normal life?"

I like to check the statistics once in awhile, and see what searches people have been typing into Google that brought them to this blog.  Sometimes there will be really crazy search terms that I can't figure out how they could possibly be connected to my blog.  Other times, it's something so personal and profound, it makes me stop and think about what I'm doing here.  Like this one.

"Can people with Fragile X live a normal life?"

Someone recently typed that question into a search engine, and it led them to The Fragile X Files.

I assume it was someone whose diagnosis is still fresh.  Someone who is just beginning to find their way.

It sounds so, painfully, much like something I would have asked, six years ago.  Back when I was trying to figure out what the Fragile X diagnosis was going to mean for us.  Today, I don't know if I've learned the answer to this question, or if I've learned not to ask it.  I'd like to try to answer it, though, if I may, for this searcher.

I'm tempted to give a sugarcoated answer and say, "it depends on your definition of 'normal'."  But that's a bit of a cop-out.  We all know exactly what this person meant by "normal."  We know what he or she was really asking.  It's the same thing we were all afraid to ask, back after our own "D" days.*

Still.  The answer is yes, at least for some people with Fragile X.  Some people are very mildly affected.  I hear all the time about people who find out later in life that they have a full mutation, and they've been living perfectly normally.

Right now, today, though, I'd have to say for a lot of people with Fragile X - knowing what you really mean by normal - the answer is no.  I'm not going to tiptoe around it.  And I can't give you details about the kinds of normal things a person with Fragile X might or might not be able to do, because just like all people, every person with Fragile X is different.  But if I was going to go with the majority of people with the full mutation of Fragile X - and what you probably consider to be normal - the answer has to be no.

There are probably quite a few parents of kids with Fragile X, who are good friends of mine, who won't like that I said that and who would argue with me.  I don't like that I said it.  But if I'm going to be completely honest here, where we are now is a long, long way from where I imagined we'd be, once we had kids.

Now what you have to realize is, just because it isn't a "normal" life doesn't mean it isn't a good life.  Normal doesn't equal happy.  That won't alleviate the disappointment that comes with a diagnosis that rips the "normal" rug out from under you.  But little by little, day by day, you'll come to realize that "normal" isn't all it's cracked up to be, anyway.

And here is what we have to hang onto - Hope. 

Look at all the clinical research trials going on here.  We are actually very lucky.  Lucky to have a genetic disorder that is so interesting to so many brilliant scientists and physicians. 

It's not a mystery.  Researchers have pinpointed exactly what the FMRP gene does to mess up brain and nervous system development.  Right now, they are now banging on the door of effective treatments, and even a cure.  And someday, maybe soon, that door is going to open.

And then, maybe, we will all be able to answer that question with "Sure.  Everything is going to be fine."

*D stands for diagnosis.

Whoops, we left the bubbles outside in the snowstorm.  I hope they still work after they thaw out.

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.