Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Saturday, January 22, 2011

School assessment

This was a busy week for the kids, but mostly for Axel.

On Weds afternoon Axel had a visit with the cardiologist so he could get cleared for all the stuff he has coming up to get done under anesthesia. Other than an enlarged aorta, his heart is fine. We were told to bring him back again in 2 years, as he's entering puberty, so they can make sure his aorta does not grow disproportionately to the rest of his body. He's cleared for all the other stuff. WOOT WOOT

Since there was no way I was going to make it to my dog class, we raced to meet Dean and Angela at her first floor hockey game. Sadly, the game was cut short when there was a projectile puker who puked all the way across the gym. Poor kid! She has another game next week so we can get a better idea of weather or not she's catching on more than she did last year. Axel, on the other hand, had a great time watching the game! He can track that flying puck without any problems and cheers when a goal is scored. He had fun!

Thursday we started school assessments so we can build Axel's IEP. He really needs to go to school! Flooding him with language is a lot easier when it's more than just the two of us home during the day. And, by the time he starts, he'll have been home for a couple of months.

The first day we saw Special Ed, and the audiologist. ( mentioned the audiologist in my previous post.) They also had an ASL interpreter there since that's how Axel is communicating right now. However, really...because Axel is dealing with subtractive bilingualism, they really should have had a Serbian interpreter there. I'm not too concerned though, because everyone agrees that this assessment is NOT going to be accurate, and is only to 1) give us a baseline of where he's at now (in other words, we know he can AT LEAST do x, y and z, but we don't really know where his skills stop right now.) He did a pretty good job of tuning into to the ASL interpreter though.

The special ed teacher did non-verbal testing with him, and he was pretty cooperative. I was out of the room for most of it, but watching through a window that was behind him so he couldn't see me. Ohhhhh he can be a little turkey! It was interesting to me to see how different he was for them when he decided he was done with what THEY wanted to do, and decided to do what HE wanted to do....like climb up on the table and crawl over it to see what else was in the briefcase, then pretend he didn't understand when they told him "No", or "sit down".

Through the window I told the interpreter than in about 10 seconds his behavior was going to REALLY escalate, and that I was coming in. I walked in, and that boy sat down on his chair so fast, all nice and polite as can be, like he hadn't been on top of the table just a fraction of a second before. They were very interested to see how he snapped back to working when I walked into the room. Hmmmmmmm I told them it's very clear to me that we need to have a behavior plan IN PLACE when he starts school so everyone is on the same page as to how to deal with the behavior I know will be showing up (and I was right. Read on!)

Friday we met with OT, Speech and DAPE (adaptive phy. ed.) Axel tested out of OT, which I knew he would. Although he's going to be FAR behind his peers in his ability to do stuff on paper, it's really just a matter of exposure and opportunity, not weakness in his hands. I'll be interested to see if they qualify him for OT based on that. But really, he did EVERYTHING the OT had him do, including button/unbutton (large chunky buttons), zip, snap, put puzzle pieces in, trace lines, etc. (and today at home he zipped his jacket for the first time!!!)

Next he saw speech. I was not in the room for this, but Dean was, and he wasn't impressed. The ST (speech therapist) kept asking him things like, "Point to the cat". Well, he doesn't know what a cat is, and asking him to point to the cat isn't testing his speech, but testing his receptive language, and he's never seen the sign "cat" except for a couple of times. HELLO! This is where testing him in his NATIVE language is important...if he had a native language. I came when they were done, and she said he'd attempted to approximate the word "in". Later Dean said, "No he did NOT! I told her that's a sound he makes for EVERYTHING, it just so happens you said a word that sounds a lot like the sound he makes!" So..yeah...whatever. You know, there are some people I really like, and some I don't. I can say without a doubt I would NOt want this person working with Axel because she will have NO CLUE how to handle him when he starts acting up, and what she SAYS he does cannot be trusted as truth because Dean was sitting right there and NOT agreeing with what she said Axel did for her.

Next came DAPE. (adaptive PE) to do a gross motor assessment. He did everything on the assessment with the exception of run. Axel's "run" doesn't really qualify as such. LOL He spent his first 7 1/2 years in institutions and was never given an opportunity to run there. (really, he was never out of a CRIB much there!) Then he was moved to the foster home, but by then it was late for developing gross motor skills. I know he occasionally played with a neighbor boy, and with the granddaughter, but I don't know what KIND of play they did. His run is kind of a combination between a gallop and a hop. I told the special ed teacher to watch closely because when he's "running", it very quickly turns into "stimming". The very first time he ran across the gym she said, "Oh wow! It's almost like you can see a switch flip!" And it is, just like watching a switch flip. I can't even begin to describe the stimming, other than it's an arm flapping, head spinning, eyes crossing thing.

He was able to hop over a line, hop over a small cone, side-step along a LONG line...and back again....hit a ball off a tee, throw and catch a small ball. He was not quite able to dribble, but you can see with some exposure he'd be able to. He sure tried hard! I hated having to pull him out of the gym. His opportunities to run and play are so limited right now being at home in the dead of winter. I've been trying to get him to the Y whenever possible, but the gym is always busy! The weekends we can usually get him there though.

We'll have a meeting sometime in the next week and a half or so to go over all the reports from the various specialists, and decide what the most appropriate placement is for Axel. (although I'm going to hold out on making any decisions until his ABR is done on the 3rd) This is where I have a really hard time because ***sometimes*** I get my mind made up about what's best for my kid and it's hard to agree with anyone on anything if it doesn't agree with what I've already decided is best. You know what they say about admitting when you have a problem.....

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