School

This won't be long, but I figured I had to get *something* up before September was over! Plenty has been going on around here - enough that once again the posts in my head way outnumber the ones that I have the time to write. But here's a little glimpse into where we're at...

School has started once again. Because we have children in both the public school system and home schooled, we tend to follow the public school's schedule as an easy way to organize our year. However, my home schooled kids started one week early to give us one week completely free from school in mid-January when we'll be occupied with other more important things. :) (And, yes, I know I'll need more than a week to get back into the normal routine of things after Baby arrives, but Owen and Leah are both self-sufficient enough with most of their school work that *they* can get back to work even if I don't!

We have been so pleased so far with the willingness our school district has to work with our desires for our family and our boys as far as home schooling goes. Although we greatly value the hands-on expertise that Krassimir and Reuben get when they're at school, we also don't want them (or our other kids) to feel that they have to go off to school while the rest of us get to all be home together. Having Daddy work from home makes this even more significant than just the home schooling is! Last year, and now this year again, both boys are in the public school setting three days a week, and home with us two days a week. On the days that they're home we spend the morning at their private therapy center (which I can't say enough good things about!) and then are all home in the afternoon.

Now that Krassimir has his wheelchair with all the appropriate tie-downs for the chair and straps/buckles for him, he can take the bus!

Our curving, rather steep, gravel driveway is going to make regular trips up and down in a wheelchair...interesting. We are mulling over a few different options to make the terrain more navigable without losing the qualities that we love about the gravel driveway. (For one, there's nothing that makes you feel like you're out of the city even when you live in a first ring suburb of a major metropolitan area, like a gravel driveway!)

Reuben's excited to go on his first day! He's sitting next to his buddy from last year - a sweet little girl who's also in his special ed classroom and both this year and last they've been in the same mainstream classroom. She was excited to see him when they pulled up to the bus stop, and they always end up sitting next to each other. I don't know her well, but she appears to be ahead of Reuben both verbally and in her fine motor skills, as we've seen in a few pictures she's drawn for Reuben over the last year.

Krassi gets to ride up the cool lift every day!

There goes my boy! He always seems happy to get on the bus...but also has big smiles for us when we pick him up at the end of the day.

One big challenge that we face this year for Krassi that was not an issue last year when he was only at school for a few hours is that of eating. After his weight gain in the spring, and our backing off slightly on how far we pushed him to eat, resulting in a slight weight loss come mid-summer, we're back to making sure every meal counts and every calorie counts. Krassi has never eaten well in settings other than home, and we weren't sure how school would go. He and I went in the week before classes started to go through a mini-meal with his teacher, OT, and one of the paras who works closely with him. For his first day we sent a typical meal for him (whatever sort of soup or casserole we've had lately, mildly pureed, and beefed up with oil and dry milk powder) as well as his pediasure/yogurt/dry milk smoothy that's his favorite around here. Our hope was that even if he wouldn't eat anything, he would at least take down his drink.

Day one? Nothing. He ate one bite of lunch and refused to drink. He'd had an applesauce cup not long before at snack time, so thinking maybe that had something to do with it, his teacher and we decided he would skip snack on his next day.

Day two? Nothing. Didn't have a snack, and wouldn't touch his lunch. Yikes! When every meal matters, it's simply not okay to be skipping entire meals!

Day three - we opted for easy-peasy, and sent him a banana mashed with applesauce - no oils, nothing to beef it up - just a simple, simple food that's our go-to when we need something to help him move down the "real" stuff here at home, with our hope being that at least he would be eating something. And...nothing. He didn't eat AGAIN!!

So then I start wondering, are we doing the right thing sending him to school? Do Matt or I need to drive over there every day and feed him? What are we going to do for this boy?

Day four - he finally ate a few bites of his lunch (a repeat of day three's easy-peasy)!

Day five - the whole banana/applesauce mix is gone, but none of the drink yet.

That's as far as we are into the school year at this point. Tomorrow we're going to go for the easy route one more time, hoping they'll also have some success with his drink, and if that's also good, we may try branching out a bit for Friday.

But I think we're moving in the right direction!

Two years ago yesterday...

...Krassimir became part of our family. Of course, it took a few more months before we could actually go bring him home, but August 2nd is the date the Bulgarian courts made it official that he was our son.

Our family two years ago.

And our family today.

Yep...

We are seeing Krassi continually make use of the "drink" sign at mealtimes! Usually it goes like this:

K: [signs "more"]

Mom/Dad: What do you want more of? [pause] If you want more to drink, tell us you want a 'drink'. [Note: this is purely verbal, we are not modeling the sign for him.]

K: [signs "drink"]

M/D: You want a drink! Here you go!

And tonight, best of all, toward the end of the meal, he just signed "drink" all on his own. ;)

Wow.

Communication milestone (possibly)

It was very exciting when Krassi learned his first sign - "more" - his first way to communicate with those around him with something more specific than what he can get across with the continuum between laughter and crying. It took many many months of repetition in every appropriate situation, but one day we noticed it starting, and now it's very consistent - when he wants something - anything - he signs "more."

He's been going to summer school with Reuben two mornings a week (we're halfway through the five-week course), and I was delighted to have his teacher email to let me know that he had signed "more" during snack time with a para on his first day. How amazing - not only has he learned how to communicate with us, but he's learned how to do so in a universal enough way that a stranger can understand what he's saying!

However, that's ONE sign. It made sense to me that it would take a very long time to get the first sign - so many barriers to overcome, not insignificantly the impact of no one ever really caring what he thought or felt about anything for so many formative years of his life, essentially teaching his brain that expressive communication was of no value. But I *was* somewhat surprised at how long we stayed stuck at one, solitary sign. My mind was thinking, there's so many things this boy has picked up on! Isn't the potential for expressive communication, now that he realizes its there, enough to drive him to learn as quickly as he possibly can?

I still can't understand why it took so long, but over the last few weeks, we've finally seem glimmers of potential with a few of the 8-10 signs that we are focusing on.

Did he really just do that?

I think you were just signing "yes"!

Do you think he was just trying to...oh, no, he was just scratching his nose...I think.

Today at lunch, after I can't tell you how many days and weeks and months of repetitive practice at one or two meals every day, Krassimir used sign to tell me he wanted a drink. He's very motivated by his drink (pediasure, thickened slightly with plain, whole-fat yogurt, and protein enhanced with dry milk, served in a bear cup.) So motivated, that we were rather confused about why it took so long for him to put this together.

But today - today he surprised me by signing "drink"!!!! Did I really just see what I think I saw??? And then he did it again! And a third time! Seven times he beautifully signed "drink" for me. With each one of those I had to hold down his left hand as he was trying to sign "more" and tell him I wanted him to tell me "drink" if he wanted a drink, and it took verbal coaching (put your hand up to your mouth to tell me, Drink!) BUT HE DID IT!!!

In all honesty, I'm not completely certain he completely understood what was going on, or if he was just responding to my excitement, because by the sixth and seventh time, he wasn't really into drinking the drink when I gave it to him, but I feel like we've crossed the big hump on that one, and I really think that "my turn/please/I want it" (a conglomeration of very related notions that we're simplifying into one basic sign - right hand single pat on the chest) is coming, and possibly "yes" as well.

Oh, if we can get "yes" and "no" we will be MILES ahead of where we are now. I remember when Reuben at, what was it, three years old?, finally was able to tell us "yes" and "no" and how that transformed how we could communicate. Are you thirsty? Okay, you are. Do you want milk? No, how about water? No, well then, are you looking for juice? Yes! Okay! Let's get you some juice!!

~~~

Later in the afternoon, my little boys delighted me with a beautiful round of back and forth. Reuben, who is not known for his discernment in gentle touches, came over and gave Krassi a big friendly slap on the chest while I was changing his diaper. He jumped (typical reaction, largely because of his tone and increased startle reflex, and not so much because it was SO hard), and I reminded Reuben to be gentle. Reuben tried again, slightly more gently, but still eliciting a startle response. Krassi laughed, and signed "more"!! Ha ha! I told Reuben that Krassi had just used his sign to ask for more, and Reuben happily complied. More laughter, and Krassi signed "more" again.

"Reuben, he likes it! He wants you to do it again! He signed, 'more'!"

The next time, Krassi slapped his own chest once, and signed more.

Whoa.

I'm wondering if we just saw our first two-word sentence out of Krassimir. I'm not sure if he was telling us "I want" and "more" or if he was showing Reuben what it was he wanted more of, and then signing "more" but either way, I am certain he was putting those two hand motions together on purpose to communicate what he wanted, and Reuben was cheerfully providing it.

Oh, were we all laughing!

And my mind was spinning at the potential of what we might be seeing here. Wouldn't it be amazing if this was the tip of the iceberg? It seems as though today has been a turning point of sorts. I suppose what happens from here will tell.

Our dynamic duo

These two...I never seem to get tired of watching them together.

V: Hey, Krassi, let's climb up on this chair!

K: Sounds good, Vania. Let's do it.

V&K: Whoa - it's pretty high. I think my face is stuck.

K: Ooof. There we go. Making progress.

V: Ha! I've got it! Are you coming, K?

V: I'll just hang out here and wait for you, big brother.

K: You know, Vania, with you sitting there, I can't quite get the maneuvering room I need for my hips!

K: Hmmm. Thanks for moving over. I think I've almost got it.

V&K: Thanks, mom. It just wasn't happening without a bit of help from you with both of us up here!

V: See ya, Krassi! I'm off again...

Something new

While Krassimir's progress physically, emotionally, communicatively (if that's a word), moves incredibly slowly, it is still moving in a forward direction, and sometimes a skill pops out that's been developing, but demonstrates itself in a significant way all at once.

The stairs is one of those.

Now, to be clear, we are only talking about going down the stairs, and only down half flights at a time, and the stairs that we're giving him open access to are the ones in the addition, which are built to 2013 standards and not 1939 standards like the full flight we have on the other half of the house, and that means they are much broader and shallower. But, even with all that, we are quite pleased with our boy who's figured out how to turn around and go feet first (a safety skill he did not previously have!) and can in a fairly controlled fashion get himself one step at a time down the stairs on his belly.

He is, understandably, inordinately pleased with himself on this accomplishment. In many ways, I think it has a similar impression on him that learning how to move from where he was placed on the floor when he first came home. Now he can add vertical movement to his horizontal skills. He goes down the first half flight to the landing level where Daddy's office is, spends a few minutes there, and then down the second half to the lower level playroom.

Away and around the corner...he'll play happily down there all by himself, all pleased with what he's done, and then, when he gets sick of it, Daddy will hear him whimpering a bit, and go carry him up the stairs again back where the rest of us are.

And it's no surprise that he's often joined by his best buddy. ;)

New Wheelchair

After months of trials and waiting, and re-trials, Krassimir *finally* has his very own wheelchair!

Although it's still very hard work for him to sit upright for any duration of time, it was sweet to see his eyes light up and a big grin spread across his face when the chair was put near him on the day it was delivered. He apparently remembered the two trial runs, and was excited to get back into it. His technique is not very good yet, but he is able to do a fair amount of maneuvering with his right hand, and Lori (his PT) is going to be working with him regularly (and we will, too) on using the left hand, as well. Even if he's never really able to give a good strong push with leftie, having it at his disposal will allow him to counter the rotation that happens when you're only pushing with one hand!

Big boy. ;)