What a cwappy Monday.

The trains were running way off schedule.  They were crowded to the point that my toes were stepped on repeatedly.  Someone was leaning really hard into my back, my purse was in the way no matter where I put it and then one of my fellow passengers began hallucinating.  Whatever it was that he was battling required a lot of shouting of some rather foul language.  All of this added up to a really tense ride.  Tension = headache in my world.  Ugh.

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.

I have waited so long for this!

For most of Monkey’s life I could tell you at any given time how many signs or word approximations that he knew.  Once in a while he would surprise us by showing off a bunch of new signs all at once but, in general, the words and signs came on so slowly that we were very aware of what he was capable of.  Then, last fall, the words began to come on faster and faster.  We are still delighted every time we hear a new word from him, we still celebrate every bit of progress but I can no longer tell you how many he knows.  I tried to sit and list them all a while back, for some reason I can no longer remember, and I stopped after 200 words…and that was off the top of my head.  I also used to write down all of our exchanges that lasted long enough to be a “conversation” or whenever he’s throw enough related words together to make a coherent sentence.

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.

Update on the air cushion.

We’ve been using the loaner air cushion since last Friday and we’ve definitely seen some improvement in the eating situation!  He really enjoys sitting on it, which is great, and we’ve noticed that we’re having to intervene much less often. 

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!

It is a BEAUTIFUL day.

The sun is not shining, it’s cold and snowy.  I hate cold, snowy days in general but I heard something so amazing this morning that it FEELS like the sunniest, happiest day in a very long while.

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.”  ((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  ))

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.

I get stuck too.

I’ve had the chorus of this song stuck in my head for days.  I keep finding myself humming it at odd times throughout the day.  This is what I want my son to think of when he thinks of his Mama and this is something I know I can do.  I love him, love him, love him.

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)

Air cushion.

We’ve borrowed  one of these:

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!

I wish I understood.

Monkey has never been thrilled to go to school even on his best days but he usually doesn’t put up a fuss.  He’d rather stay home and I cannot argue with him, I’d rather stay home too!  On his worst days…well, let’s not discuss those days again (*touch wood*) they’re in the past. 

The days that truly confuse me are the days like today.  He wasn’t excited about school but he wasn’t terribly upset.  He was just tearful and emotional.  Before we left the house he told me “elbow.”  He wanted me to kiss his elbow…not that he’d hurt it…he just needed a kiss from Umma (this is a common tactic.)  He seemed to recover but when we got to the school he was pouty and his bottom lip was quivering.  He didn’t melt down but he did try to delay going into the school a little bit.  By the time we left him, he was fine.

I really, really wish he could tell us what was wrong.   I really, really wish we could find a way for him to enjoy going to school.  🙁