For me, life with Fragile X is full of worry, uncertainty, anger, exhaustion and grief.  It is also full of laughter, amazement, joy, gratitude, wonder and, most of all, incalculable love.

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Any guesses what “shoe-ah-nee” means?  I’ll put it below the cut.

It is “show me”!!!   It’s what I say to him when he uses a word I don’t understand.  I am forever asking him to show me (insert whatever new unintelligible word he comes up with.)  Usually he can show me what he is talking about but obviously this word/phrase was a bit difficult.  No wonder he’d just stare at me whenever I asked him to show me “shoe-ah-nee,” lol.

I feel like dancing around and singing “We did it!  We did it!  We did it!” whenever we have these AHA! moments.  OK, I confess, that is exactly what I do when we have these moments

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So, I get to the office.  I had not been happy when I left last week…I’d been in the midst of a pointless discussion that I seem to have every couple of months.  “I know what I’m telling you does not match the law.  I agree that you have interpreted the law properly.  I also know that the man behind the window does not care.  He’s been doing this for 20 or 30 years and you will never change his mind and, really, without that stamp of approval from him, you’re sunk.  Sure, of course, I’ll go call and check again.”  Such a waste of time and money but what do I know?

Anyway.  I get to the office and that red light on my phone is blink, blink, blinking away.  I glared at it.  I did everything I could think of before checking that message.  I even considered ignoring it.  The whole time I was using some of the curses I’d learned on the train ride in under my breath.  Finally, I picked up the phone and jabbed in the code only to hear…

Hewwo?   Hewwo?  Hi!  Mommy!

That little Monkey managed to get his hands on Duhdee’s phone on Saturday and he called me at work.  What a sweetie.

I’ve listened to it three times already.  For some reason, it doesn’t feel like such a cwappy Monday anymore.

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You know what?  I CAN’T DO THAT ANYMORE.  I can’t do any of it.  He knows so many words that I have lost count and he uses new ones every day.  He and I have conversations, multiple conversations, every single day.  Some are cuter than others so they stick out more but many of them are so mundane that it just doesn’t occur to me to share them.  I have MUNDANE conversations with my son.  He tosses out sentences now regularly.  Again, some stand out more than others either because he uses new words or he expresses some new desire that takes us off guard but they happen every single day.

There was a long period of time where I thought he might not ever talk and now…I’m starting to take it for granted a bit.   I have to keep reminding myself that once upon a time I lived with the fear that he wouldn’t and now he does.  I have to keep reminding myself of this whenever I think of something else I’m afraid he won’t do because I know he’s certainly not done showing us what he is capable of.

Oh, hey, had I happened to mentioned that, inspired by this post by fragilemom, I discovered that my Monkey can read too?  This kid just keeps blowing my mind.

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He will still overstuff but it’s not every single bite, it’s every 2 or 3 bites.  And he is much better about using the fork or spoon.  Again, he’ll still grab food (and this is when he tends to overstuff, the utensils slow him down) but we don’t have to tell him to use a fork or spoon with every bite.  We’re seeing enough improvements that we’re going to order him one of his very own so he doesn’t have to cart it to school and back every day.

Yay for progress!

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This morning at school drop-off I approached one of the classroom aides to see if she could help me figure out a name Monkey had been trying to get me to spell the night before.  There are two kids with names that start with “J” in his class but it was not either of those names.  We were just stumped.  She wasn’t able to think of any other child who it could have been but she said this to me…

“You guys are just so amazing!  He is so interested learning to spell.  He’s going to be a great speller.”  I thanked her but said, “HE works so hard.  HE wants this.  I am so impressed with him.” ¹

And then she said…this is where it gets good, people!

“He is changing so much.  He is paying attention more in class.  He is able to sit longer.  He’s making great eye contact.  He’s just so focused.” 

Just in case you think you read that wrong … she said my son is more FOCUSED in school.  In January of this year one of the 3 main areas he needed improvement in was his attention.  Since January she has SEEN it improve.  She has only been in the classroom since January also so any improvements really are in the last 2 months!! 

OMG OMG OMG OMG!  I’m not a touchy-feely person in general but it was only by the barest margin that I restrained myself from hugging her.  When we left I literally jumped for joy in the hallway.  We’ve seen the improvements at home too but we never know if they’ll see it at school or even if we’re imagining it…but we aren’t!  We really and truly are not imagining this mental focus we’re seeing in him.  Of course, he’s still pretty much unable to control his body activity but somehow, against the odds, he’s starting to be able to exert some inner control.

What a blessing!  It could not happen at a better time.  We’ll be working on his kindergarten placement in 2 months.  The integrated classroom is looking like a surer thing.  I was in contact with a SC member yesterday and it was mentioned that although there were cuts in the school budget this year the SPED budget was actually INCREASED.  I had expressed some sadness that there would only be one classroom and he agreed that they’d like to do more of them.

Just in case anyone is curious…who the heck knows why he’s improving right now.  We have been supplementing him with Acetyl-l carnitine for 4 months.  We’ve been told, in general, to not expect to see improvement from a supplement for 3-4 months.  It may be a coincidence.  It may very well be that he’s just maturing.  The aide was unaware of the new supplement and the research results surrounding it…so maybe it isn’t wishful thinking on her part either.

Ultimately, I don’t really care why it’s happening, I just care that it is.  Though…I do wish I could tell you all, “Run out and try this amazing supplement because LOOK WHAT IT HAS DONE.”  “Consider it, who knows what will happen,” just isn’t as satisfying.

1. I like to make it clear that, while I realize I am a AWESOME mom, lol, he actually should get some of the credit here :-p 

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Loves Me Like A Rock (words & music by Paul Simon):

(Ooohh..)

When I was a little boy (when I was just a boy)
And the Devil would call my name (when I was just a boy)
I’d say “Now who do, (who-oo)
Who do you think you’re fooling?” (when I was just a boy)
I’m a consecrated boy (when I was just a bo-o-o-y)
I’m a singer in a Sunday choir (oooh)

Oh my mama loves me, she loves me
She get down on her knees and hug me (ahh a-a-ah)
(oh)She loves me like a rock
She rocks me like the rock of ages
And loves me
She love me, love me, love me, love me

When I was grown to be a man (grown to be a man)
And the Devil would call my name (grown to be a man)
I’d say “Now who do, (whooo)
Who do you think you’re fooling?” (grown to be a man)
I’m a consummated man (grown to be a ma-a-a-n)
I can snatch a little purity (oooh)

My mama loves me, she loves me
She get down on her knees and hug me (ahh a-a-ah)
(oh)She loves me like a rock
She rocks me like the rock of ages
And loves me
She love me, love me, love me, love me

And if I was the President (was the President)
The minute that Congress called my name (was the President)
I’d say “Now who do, (whooo)
Who do you think you’re fooling? (who do you think you’re fooling)
I’ve got the Presidential Seal (was the president)
I’m up on the Presidential Po-o-dium (oooh)

My mama loves me, she loves me
She get down on her knees and hug me
(oh)She loves me like a rock
She rocks me like the rock of ages
And loves me

Fade out:
She love me, love me, love me, love me
(loves me like a rock)

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from Monkey’s classroom to see if it helps us with the overstuffing issue.  It mimics an exercise ball but it’s much more compact.  He absolutely loves it and carries it with him everywhere.  I don’t know yet if it will do anything to help with the eating issue but it makes him WANT to sit.  This boy never sits, except to use the computer, and now he’s running around asking for a seat.  He even just moved a dining room chair into our living room so he could use it.  He keeps calling it “Dawit’s seat” I wonder if he ever uses it at school himself…may be something to try there as well, if not.

And, holy moly, he just said a new sentance!  “I want to sit there.”  Nice!

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