Yes, You Came to the Right Place...

This is the former Three Little Monkeys -- now known as The Fragile X Files.

I did not find a single blog called The Fragile X Files!  The closest thing I found was an article from 2007 called The X Files -- which actually was about someone with Fragile X.

I still have Three Little Monkeys, and I always will!  They just aren't so little anymore, and Three Big Monkeys wasn't as cute a name.... although would probably have been unique!

It feels like a fresh start.  Sometimes we all need one.

Oh by the way, my girl got her glasses yesterday.  Right after, her grandpa took her to the state fair where she had wild success at the carnival games.  Darn those carnie folks, they are turning her into a gambler.....she's won just enough to have a taste for it.  She came home with armfuls of stuffed animals, mostly puppies.  After winning at the water-shooting game, she commented on her excellent aim, proclaiming "I think it's the glasses."

And when I asked to take pictures of her, she consented as long as her friends could be in the pictures with her, and they could be practicing blowing bubbles with their bubblegum.  So this is three little girls with mouths full of Bubble Yum.

No real bubbles yet.  Maybe the glasses will help her be successful at that too.  You never know.

Getting Cozy

The boys got cozy on the mini trampoline last night before bed.  They were too cute, I have to share pictures.

And now back to your regularly scheduled Sunday morning.....

Changes

I've been thinking for awhile about changing the name of this blog from "Three Little Monkeys" to something a bit more unique that incorporates Fragile X.  When I called it TLM, I was thinking about the fact that we sing "Five Little Monkeys Jumping on the Bed" so often.  What I wasn't aware of was how many blogs there are out there called "Three Little Monkeys", or four, or two, or five, or whatever.  It's not exactly original.

Secondly, I really admire those blogs out there that have Fragile X in the name somehow, partly because someone who searches for a blog about Fragile X (as a newly diagnosed family might) would find them.   "Three Little Monkeys" will not be found in a search for Fragile X.  I know, I've tried it.

So last night while dealing with a bout of insomnia I had an idea for a new name.  I'm going to work on making the change this week.

By the way, the URL kormanfive.blogspot.com will remain the same.  I'm not messing with that.  So bookmarks and RSS feeds shouldn't change.

Hyperactivity Explained

This is what I think it feels like to be Zack.

Imagine if you will your favorite football team has finally made it to the Superbowl after decades of painful heartbreak.  It's the last few seconds of the game.  Your team is down by 2 points.  If they can get the ball in the endzone in the next play they win.  Or if they can leave a second left on the timeclock, they can try for a field goal and win.  Win their first Superbowl in 40 years.  The two teams line up and wait for the count.

Your heart is pumping with adrenaline.  You can't sit down, you are too wired; you have to stand up and bounce just a little in front of the TV.  Your eyes are like saucers.  You're pretty certain not to blink until this game is over.

The ball is snapped.  You wring your hands with anticipation and clench your teeth.

I think this is what Zack feels like around 75% of the time.

Little Girl Dramas

Okay I'm trying very hard not to wish away the summer, but I've had about all the little girl drama I can take for one season.

You know what I'm talking about; the preteen drama queens -- a later, slightly more mature version of a toddler meltdown, when a group of little girls savagely stomp on each other's feelings and forget how to play nice.  Sort of a rated G version of Mean Girls.

It's been a long, hot summer for Aliza and her little friends.  Long weeks spent bike riding, swinging, making mud pies, running through sprinklers, swimming, and working lemonade stands have lost their ability to captivate and charm like they could in June.  Everything is "boring" now.  So tempers tend to flare with little to no notice.

It's funny how two little girls can play together quite nicely, but add a third little girl in there and suddenly you get a great example of the cliche' "three's a crowd."  Good grief.  If it's not "they aren't being nice to me!" Then it's "you aren't my friend anymore!" or even "I'm never playing with you again!"  I send one home and others come to take her place.  They are like little boomerangs.

There's just been way too much togetherness between all these little ones these last few months. They aren't feeling the love anymore.

I would have planned more activities for Aliza this summer, but it's hard to fit things in between the boys' therapy schedules.  All summer long, there were many days where the only time neither of them is in therapy and we could actually get in the car and go somewhere might be between 3 and 3:30 PM.  Not many activities seemed to exactly fit our free time.  She did take swimming lessons and go to vacation bible school, but we rearranged the boys' schedules a little to fit that in.  The boys' routine had to give a little too, because otherwise "it's not fair!"

 12 days until school starts, not that I'm counting.

Zack goes to the Dentist

Zack and Aliza had a dentist appointment this morning.  I had assigned all the kids' dental needs and responsibilities to Mark, but he's been busy with other things lately and so I took a turn at bringing the kids in for a teeth check.

Aliza just had sealants put on, and she was a trooper as usual.  She was completely unblogworthy, no story there.  She got through it without so much as a whimper, selected her prize for being a good patient, and was outta there.

Zack was confused as to why we got into the car in the morning and backed out of the driveway without his brother.  "AJ?  AJ?" he asked as I pulled out.  I told him AJ went to the dentist last week and this time it was his turn.  He hasn't been able to say his brother's name all that long so it's like music to my ears, and at the same time I felt bad for him.  I don't know if I realized just how attached to AJ he is.

In the waiting room Zack paced and bounced nervously by the exit.  I asked him to come sit by me but he just shook his head and said "no," very politely.

They called us back and I sat on a bench with Zack facing me on my lap.  The dentist sat opposite me and then we bent Zack back so he laid his head on the dentist's lap.  I tried to hold his hands down.  He fought like a rabid monkey.  He screamed and cried.  I managed not to.

When we were done I held him, and he waved through his sniffles and tears and said "buh-bye.  buh-bye." to the dentist.  He was sooooooooo done with her!

In between his continuing screams, the dentist told me his teeth looked fine, but now that he's lost a tooth, his 6-year molars will be coming in and the next appointment will need to include a good teeth cleaning and x-rays.  He'll need to be sedated for it. 

Also, since he's getting so big and strong, for the next regular appointment we need to consider strapping him into the dental chair.  I knew this was a possibility too, but had conveniently managed never to think about it.  I hate the idea of that.  I don't know what is worse, though; sedating him so he's a zombie and sits still for it, or strapping his arms and legs down so he can't defend himself.  He'll be terrified, no matter how much I prepare him for the experience.

And of course it's not just him.  AJ will go through the same thing.  I guess I have to start thinking and researching how to make this a less terrible experience for them.

Zack Lost A Tooth!

Zack lost a tooth.  Bottom row, right smack in the middle.

No, I mean really lost it.  As in, none of us have any idea where it is.

I knew this was possible.  Every once in awhile, someone sends an email to the Fragile X email group, talking about how their son or daughter lost a tooth and it just disappeared.  Most likely he/she swallowed it.  And I'd always think, how can that happen?  How can your child have a wobbly tooth and you not know it?  I mean, remember when you were a kid and had a loose tooth?  Remember how difficult it made eating?  Remember how much fun it was to gross everyone out, wobbling it?  No?

Well I really didn't either, but Aliza has had loose teeth recently.  She got a big kick out of showing us how flexible a loose tooth can be, shoving it back and forth with her tongue as far as it could go, making us all nauseous.  And she turned total diva when she ate something.  Oh the pain, the agony!  You'd think that tooth was only attached by one or two exposed and strained nerves.

So how could Zack have a loose tooth, mouth everything constantly as if nothing was wrong, and then lose the tooth and be completely unaware of it?

Hyposensitivity.  It's the only logical answer.  He is less sensitive than the rest of us.  He doesn't cry much when he gets hurt. Bruises, scabs, and mosquito bites don't seem to bother him at all.  He hugs really really tight.  And he even gets some good stimulation from hurting himself a little bit; i.e., the head banging.

That's the only way he could have chewed on that butterfly toy all day long with a loose tooth, and not been irrirated by it.  And not even noticed when the tooth came right out.  I can only imagine that he was eating something, probably Honeycomb, and just swallowed it right down.  Either that or it came out when he was chewing on his butterfly and he may have just spat it out.

(I spent some time yesterday trying to get a picture of Zack's new gap, but even my DSLR isn't fast enough.  If he says "AJ" his mouth is open enough to see it, but he says it so fast....)

At any rate, it's gone.

Aliza was very concerned about how the tooth fairy was going to be able to visit Zack and do her thing.  Briefly she wondered if she were the one to locate the missing tooth, perhaps she'd be the one honored with a tooth fairy visit.  I put an end to that fantasy right away, and wiped those dollar signs right out of her head.  I explained to her that the tooth fairy would still come for Zack.  She's a kind, compassionate fairy, who understands when kids lose their teeth sometimes and can't find them.  He'd still get money for his tooth.

So Aliza wrote a note, explaining the situation, and I wish I had taken a picture of it, but she'd already put it under his pillow.  Here's what she wrote:

Dear Tooth Fairy,
Zack swallowed his tooth.  He is sorry.  Please leave him a tip.

This morning she found a dollar under Zack's pillow.  She showed him, and he reached for it briefly before deciding Dora's Big Birthday Adventure was too exciting to be distracted.  Zack doesn't get the concept of money yet, so Aliza will help me pick out something he will like.

In other news, we had a couple more swimming outings!  We are soaking up the last of the summer freedom and sunshine with as much pool-time as we can fit into a weekend.

Zack chewed on his arm a lot in the water, until we got his butterfly for him.  He was a little tense.  He's not used to a sandy beach, it was a lot of new sensations for him to take in.

Warning -- I'm about to gush a little.  Is this the most gorgeous child or what?  My niece, Jocelyn:

Aliza's grandpa is a mostly-retired optometrist, but he came out of retirement briefly this weekend to check his granddaughter's eyes.  To her great delight, she was found to be a little near-sighted and is being fitted with purple Disney specs.

These are not the ones she picked.

I somehow missed getting a picture of her in her new frames, but doubtless I'll have plenty of pictures of her in them when they arrive.

Water Games that Baffle Me

Today Aliza and I played a game in the swimming hole at the state park.  I had never played before, so she had to explain it all to me. 

I was hesitant immediately when she told me it's called GIANT, and you guessed it -- I'm the giant.

Wonderful.  Loving it already.

So it consists of me chasing her and trying to catch her while she screams and swims away from me.  As I got close to her the first time she put her arms straight up in the air and yelled "T!  I call a T!"

What's a T?  Well apparently it means I can't touch her. Kind of like a time out, I guess.  Oooookay.

So I teased her, jumping around her and acting like I was going to touch her while she had her arms up in the air.  And she hollered "no puppy-guarding!"

What?

I told her I'm going to need a written set of rules with a glossary if we are to play this game again.

How Are The Boys Doing?

This is a question I get a lot.

Most of the time when you run into someone in passing and they say "hi, how are you?" what they really mean is, Hello; but I wanted to say a bit more than hello and acknowledge that I know you and like you.....so give me a brief word or two about your current status, but not too much because my attention span is only so long and we are both busy and on our way somewhere.

When they ask how the boys are doing, I think what they mean is I want to acknowledge my awareness of your sons' and your family's issues beyond the norm, but I'm not sure what specifically to say so I'll just ask this very open-ended question and trust that you know how best to answer it for the circumstances.

Only I don't always know.  I'm never quite sure what kind of answer they are looking for.  Do they want the long answer or the short answer?  Should I tell them what our latest struggles and challenges are, or should I just say what I'd say if they were ordinary kids?

THE LONG ANSWER
"Oh, there have been a lot of changes to their therapy schedule lately, so that has them pretty anxious.  Getting adjusted to a new med we just started this month.  They still don't play well with other kids, and I'm starting to worry about Zack specifically because 5-year-olds aren't going to understand that they scared the life out of him, and that's why he bit them.  AJ is going to be completely overwhelmed by all the new people and the new surroundings.  I'm very nervous for them.

"I can't get Zack to take a sippy cup to save my life so what I swore would never happen is starting to look like a reality; I'm going to have a kindergartener who still drinks from a bottle.

"We are so many light years away from being potty trained, I can't even go there right now.  It's too depressing.

"Thankfully, they are both sleeping pretty well although Zack has been waking up and banging his head against the wall or his headboard.  He doesn't do it terribly hard, but hard enough that I wish he'd quit."

THE SHORT ANSWER

"The boys are doing good.  Getting big.  Getting ready for kindergarten!"

Many factors go into deciding what kind of answer to give, among them:

• 
  
  My mood.  Sometimes I just don't feel like filling you in on the details, no matter how genuinely caring I know you are.  Sometimes it's been one of those days (or weeks, or months) and I just want to get on with things.
• 
  
  The questioner's previous knowledge of the boys.  How much background am I going to have to go into here?  Do you know the twins now, or am I painting a brand new picture here?
• 
  
  Location.  Are we in a place that will comfortably provide for a few minutes conversation?
• 
  
  The kids' presence.  If they are with me, no real conversation is going to occur.  Let's all just accept that truth right now.

Most of the time I don't mind talking about the boys at all.  Actually, sometimes there's no shutting me up about them. 

But then there are times I'm not in a chatty-cathy kind of place.  It doesn't mean things are not going well.  It doesn't mean there isn't any news.  It just means, right at that moment, I'm not in a conversational mindset, and I appologize for that.  I know that people care.  I just can't always fill in the gaps.  So stay tuned here for updates if you really want to know the answer to that question!

They sure did love this teeter totter!

Duluth

Mosaic from the Lake Superior Zoo

Mark and the boys got some time away from Aliza and I this past weekend.  Aliza, my mom and I went Duluth, Minnesota for a couple of days to relax, shop, swim, eat, and do whatever Aliza wanted to.  And for the most part that's exactly what we did.  We may have indulged her every whim a tiny bit.  We may have bought her just about every little trinket and toy she wanted in every little shop we wandered into.  I couldn't help it.  Delighting and pampering my daughter feels like indulging myself.  And I can just spend this week now gently bringing her back to a humble reality, where she doesn't get every little thing she asks for.

But it was just so easy to do what she wanted, without her little brothers there, limiting what we could do and how long we could do it.  And most of what Aliza wanted to do, Grandma and I wanted to do too.

Interstate 35 through Duluth is under loads of construction right now, and threading the car between the cement blockaids was neither relaxing nor enjoyable.  There was also a lot of traffic -- apparently we were not the only TwinCitians who thought a weekend in Duluth was in order.  But the Canal was scenic and breezy and gorgeous as usual.  I only get there about every three years, and every single visit I think, I've got to get up here more often.

We met up with my oldest friend Ro, who took us on a fruitless although entertaining search for agate rocks.

Not being regular beachgoers, I truly think we could have sat on the shore of Lake Superior and burrowed and poked through those rocks, looking for nothing in particular, all afternoon and well into the night.

It was an overcast afternoon and later the clouds let loose just a few raindrops.  Just enough to create this luminous rainbow.

It was even, for awhile, a double rainbow.  I don't know that I've ever seen one before.  If I have, I certainly didn't give it the appropriate respect.

I didn't do this rainbow proper photograhic justice, but you know how rainbows are.  If I had run off and tried to get a better angle, it would have disappeared forever into the sky.  You have to take your shots when you can get them.  They're kind of like children that way.

The day after we visited Lake Superior, we visited the Lake Superior Zoo.  Seemed like a lot of it was under construction too, or else just muddy from record rainfalls this summer.  But if I were to make unreasonable and unnecessary goals, if my life were one of leisure where I could actually concieve of achieving things like this, I'd like to visit every zoo in the United States.  That's one of my "When I Win the Lottery" life plans.  That, and go on a safari through Africa.  With a really great camera.

 She was the tamest, friendiest llama I've ever met.  Know how I know this is a female llama?  The long, thick eyelashes.

When we got home, the boys were happy to see me, I know, even though they pretty much ignored my presence for the first few minutes.  That's just how they roll.  And I know daddy did a great job keeping them busy and having "guy" time with them.

Next vacation -- this coming weekend, we'll be vacationing in the greater New Ulm area.  I don't know how much sightseeing and relaxing will be done by me, but this one is for the Zack and AJ.  It's their turn to do what is fun for them, to knock off and hang loose for a few days in a place they are familiar, with people they love.