Perchance to Sleep

I will never feel justified in complaining about a brief, slight lack of sleep.  Not after surviving the boys' first two years.  I think Mark and I are both permanently brain-damaged from those first two years.

They've been waking up between 4 and 4:30 and coming into our room or each others' rooms.  Then while we try to get them to settle down, they wave their arms around in the air wildly, and talk.  They repeat favorite phrases from their favorite shows, or else just things they hear us say.

"Hi, I'm Leo.  These are my friends Quincy, Annie, and June."
"Swiper no swiping!"
"Hi Zack."
"Okay, boys."
"Yeah, there they are."

(repeat each line 6 times at the top of your voice to get the full effect.)

Complaining that the boys have been waking up before 5 seems petty.  They are sleeping soundly from 8ish until 5, usually. It's just that we had gotten used to them sleeping soundly until 6, or even later.

We're such lightweights now.  One measly hour earlier, and we're all whiny.

I've never been convinced the Melatonin helped them at all, so we cut back and started cutting the 3 milligram tablets in half to give them.  That was maybe around when the pre5 AM rising began  to be consistent.  So back to whole tablets we go.

STX209
We are up to 20 milligrams in the extension program now.  The trial ended in the middle of December and we don't know if they were getting the med or the placebo, but we suspect that Zack, at least, was getting some dosage of it, because his anxiety did improve.  AJ might have improved as far as anxiety is concerned.  But some other behaviors are rampant.

Then again, he might just be acting like an ordinary little boy.  A boy without excuses like autism and Fragile X to blame his behaviors on.

He's been really mischievous lately.  Testing both us and his teachers, to see what he can get away with.

I have to hold boys boths hands tight, when we walk from a store to the car or vice versa.  Because they won't just walk alongside me.  They won't stick by me at all.  They'll wander the parking lot, aimlessly, not watching for cars at all, like a toddler might.

Once we are within a few yards of our car, though (and no moving vehicles were present), I could let go of the boys' hands, and be assured they would run toward our car and get in, such was their enthusiasm for going home.

Lately though, if I let go of AJ's hand, he's more likely to run off in some random direction, looking back at me and laughing as he scuttles away.

Mischievous.

At school he'll get up and run off into the hall while they are having circle time.  When an EA brings him back into the room, he sidles up next to his teacher, smiles charmingly and says "Hi, Miss Danielle."  A real little suck-up.

Yesterday in church, though. something happened that made me immediately think the STX209 medication is working.  Or rather, I should say, something didn't happen.

The boys didn't need to be escorted from church.  They didn't bounce around, holler, and generally make such a commotion that one of us had to take them out.  They sat, they looked around, they ate cereal, and they watched "Super Why" on the iPod.

It was the first time ever that they both sat through an entire church service.

Once in awhile Zack would have a little trouble juggling the iPod while he reached up to put fingers in both his ears, when the music got a little loud.  Other than that, no trouble, whatsoever, from either of them.  We were astounded!

Finally, I wanted to mention that Mark went to Aliza's school last week, and was the "mystery reader."  Every so often a parent comes in to read a book to the kids, and Mark decided he wanted to do that.  It was very cute.

Afterward the kids got to ask him some questions of their own.  Here are some of the things the 3rd graders wanted to know.

"What is your favorite color?"
"What is your favorite restaurant?"
"Have you ever been to Chili's?  What did you have?"
"What is your favorite kind of cake?"
"If you were president, what law would you make?" (Gotta love that kid.)
"Where did you go to school?"
"What is your favorite football team?"
"What is your favorite hairstyle?"

"Grown-ups never understand anything for themselves, and it is tiresome for children to be always and forever explaining things to them."
 ~Antoine de Saint-Exupery

Journal entry from 2005, or What I Knew Then

I was browsing through some old files yesterday and ran across this would-be journal entry (I didn't officially keep a journal but occasionally jotted things down as I thought of them.  Actually that's not much different from how I operate a journal now).

Whenever I talk about our Fragile X diagnosis, I usually stress that it was shocking to me because I didn't believe anything was really wrong with the boys.  I tell people that I was sure they would outgrow whatever was slowing them down developmentally and I thought everybody was just being crazy cautious.

Then I found this note I wrote on November 21, 2005.  Evidently I have blocked this out of my memory.

My dad told me recently too, that he remembers me telling him around Christmas time, the boys' first Christmas when they would have been 10 months old, that I was worried they had autism.  I don't remember thinking that, much less telling him.  I guess I didn't have my head buried deep in the sand, after all.

It's important to keep notes and journals.  Write down what you're thinking.  You have no idea how much you'll forget, or how valuable and astonishing what you are thinking today might be in 5 or 6 years.

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The boys had their 9-month check up last week, and they are growing well -- AJ was 19 pounds, 3 ounces (exactly what Aliza was at 1 year!) and Zack was 17 pounds, 4 ounces.  They are both growing so fast.  Unfortunately they aren't progressing otherwise very well, they should be sitting up well and starting to try to crawl by now, and they aren't at all.  So since last week when I became panicked about that, we've been working with them a lot and AJ can pretty much sit up now.  He falls down though after awhile, he hasn't learned to remember to continue balancing himself, after a minute or a few minutes, he forgets, and he reaches for something, and falls over.  Zack can't sit up at all yet.  We are working with him, but he just doesn't balance well yet. 
So Vicki thought they would benefit from a therapist, who will come over and talk to us about them, and will look at the boys and evaluate all their motor skills.  She might set up a weekly appointment with us, to keep up with their progress until they are walking.  That would be nice, I'd appreciate the help, because right now I'm frustrated that they aren't progressing on their own very well, and I'm worried more than usual (I always worry about this) about them being "normal".  When they were tiny, it was a good 3 months before Zack really focused his eyes, so I spent the first few months of his life worrying he was going to be slow, or blind, or something.  And then it seemed like Zack was raring to go, he rolled over first, and seemed more mobile, so then I worried that AJ was going to have cerebral palsy or something.  The thing is all these things are more common in multiples, so I'm very worried mine won't be normal, mine will be the ones who have problems.  Now that AJ is sitting up, I've shifted my worrying to Zack again, and the possibility of his physical problems.  I also worry that they don't pick things up and put them in their mouths.  This is good in that, if they don't chew on toys, they're less likely to be putting bacteria in their mouths and getting sick.  But at the same time, if they aren't picking things up and putting them in their mouths, they can't feed themselves.  They are great with being spoon fed, they open their mouths enthusiastically most of the time.  But if I put a piece of solid food in their mouths, they make faces like I'm poisoning them, and they spit it out 10 times before it finally has pretty much turned to mush and it stays in.  It's funny, this is the opposite of Aliza, she wasn't interested in being spoon-fed, she only wanted to eat what she could pick up and put in her mouth herself.
So I should probably make a list of things to talk to the therapist about, including the sitting up and crawling issues, and the feeding issues.  They just aren't like their sister in a lot of ways, and while I know every baby is different, it makes me worry they aren't "right".
They do babble a little bit, Zack does moreso than AJ.  So that's good, although I wish they did more of that too.  Zack babbles some actual sounds, and AJ just sort of hums and grunts, but it seems to have a rhythm to it, and he kinds of responds to us talking to him that way.  Zack is almost musical, AJ is more like a caveman.
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Funny, I don't remember being this worried, their first year.  I do remember that Zack didn't focus his eyes for quite a while, but I don't remember it going on for so long.  When tapped to remember something from their first year, my memory has rose-colored glasses.  Aside from the sleeping issue, of course.  I remember not sleeping.

Falling Asleep

I would have thought that someone who could fall asleep in school was obviously incredibly relaxed; sleeping is a sign of letting go of stress, right?  I have boys with Fragile X though, and I've seen them conk out during stressful times, so I know it can be a reaction to a great overload of stress, too.

Anyway, Aliza recently told me she has been soooo tired at school, and has even fallen asleep occasionally, during movies at school.

Foolish child.  She never should have told me that, because I upped her bedtime by a half hour.

Every day when I have picked her up in the past week or so, I ask her if she got tired or fell asleep at school that day.  Yesterday she told me that she didn't actually fall asleep, but she was soooo very tired in the morning that she had a headache for a little while.

Wrong answer.  Early bedtime.

She has not put this together yet -- that her complaints have directly resulted in my making her go to bed earlier.  I imagine it's only a matter of time, though.  Last night as she climbed up into her top bunk she looked out her window and exclaimed "but it's still light out!" Cry me a river, sister.  Stop telling me you're so tired, and I'll stop putting you to bed earlier than any other kid in the neighborhood.

I can make her go to bed early, but I can't make her fall asleep.  I put her to bed a little after 8 last night and at 9, she was still laying there, trying to fall asleep.  Don't know what to do about that.

Zack has been a sweet boy lately, not screaming or pinching or biting much at all.  Agreeable and smiley.  But today he fell asleep during a break in therapy.  I think the last time that kid took an afternoon nap was some time in 2008.

AJ has been very giggly, lately, but also very bite-y and pinchy.  I don't know why my sweet boy is doing this.  At school this morning, he swatted at a teacher who told him to sit down and wait for something.  I know this is a manifestation of his disability, his teachers know that, but I still feel like I should appologize for his behavior.

It's always something.  Everybody's going to bed early tonight.

The Sleep Situation

Last night we decided to revert to our old ways.

For over a year, we (and when I say "we" here, I mean Mark, 9 mornings out of 10) got up around 4 AM and gave the boys another dose of liquid Clonidine, to keep them asleep past 5 AM.

About a month ago we decided to experiment with that routine and see if maybe the boys were able to stay in bed on their own, without the 4 AM dose. They are getting bigger and more mature and sleeping so well, and we were not loving having that little task every morning, so we thought we'd just do a trial run and see how it went.

Result - it did not go well. Our days have been beginning between 5 and 5:30 AM, only once in awhile 6:00 AM. And they didn't wake up like other people; that is, groggy, still sleepy, having to laze about for the first half hour they are conscious. Nope. These guys woke up at 5:30 AM, with the energy of someone who'd just had a 24 oz. Mountain Dew. They ran up and down stairs, trying so hard to wake up their sister (who is NOT a morning person). They required video after video after video, none of which actually satisfied them. They climbed up on the piano and knocked things off the bookshelves. They wrestled and bit each other until they were both red-faced, sweaty and slobbery, with bite marks dotting their faces and arms.

Zack in particular had some behavior problems that I believe are directly related to his being too tired. He kept bending his leg up to his face (or bending his face down to his leg) with amazing flexibility, to bite himself in the knee, calf, or foot. He chewed on his own skin like it was gum. If he and AJ were wrestling and I came over and broke it up, Zack would drop to the floor and savagely bite himself. He was just so manic about it. I'd yell "ouch, don't bite my baby's legs!" and he'd laught at that a little, but it didn't stop him. No amount of coveted chewy or comfort toys would satisfy his need to gnaw. Although the butterflys came close!



So, we've gone back. I don't consider it regressing. It's just returning to what worked. Both boys slept until 7 this morning, a good 12 hours for Zack, and both woke up happy, calm, and contented. Very little wrestling and biting. Just a little cuddling.



I am anticipating a much calmer day with much more harmonious, peaceful children.

Regressing: The Bottle Battle Continues

I'm ashamed to admit the new low we've sunk to.

Zack still won't take a sippy cup without being strongly reinforced.  And he was getting a lot of his calories from his chocolate milks apparently, because his discomfort and hunger is striking out where it hurts me most -- sleep.  Or lack thereof.  He is up half the night, not necessarily crabby, but wide awake and looking for things to do.  We gave him a couple of bottles at night, had a couple of very tired days, and decided enough is enough.

So what I've done the last 36 hours or so is give him bottles, and try to hide it from AJ, because he's doing so well with the sippys, I don't want AJ thinking he's got the short end of the stick here, but I also don't want him regressing when he's been doing so well.

What you can learn from this post is, if you ever need to torture me, deprive me of sleep.  I think those first two years with the boys not sleeping more than 2 hours in a row ruined me for nighttime activities forever.  I get tired at 8 PM, and it would take something pretty special to make me stay up past 10.  (i.e., New Years Eve is not special enough.)