Saturday, April 28, 2007

evolution of an obsession

You folks will all remember when I talked about Jacob's obsession with signs. He recently demonstrated to me how something that used to be a totally static perseveration with him has evolved into something quite different.

Originally, he would obsessively read street signs. Wouldn't matter if we were paying attention or not, our car rides were pretty much Jacob in the back seat yelling out street names and exit numbers, and the rest of us chatting.

Last summer, as his desire to experience share with us grew, his sign obsession evolved to include us. Rather insistantly, as in SHOUTING at us to make sure we were paying attention, and not giving up until we acknowledged what he was saying. A suggestion from an RDI Program Certified Consultant at the Annual RDI Parent's Conference made a big difference for us and helped us turn it into more of an experience sharing moment. (See that same link from above to the post that talks about that.)

Now we can see the latest evolution of the sign obsession. The other day we were shopping at a local bulk warehouse type store. As we were waiting in line at the checkout, Jacob suddenly told me "when I get home, I'm going to draw a picture". I wondered out loud (with Zoo Boy) what he might draw about, but Jacob just grinned and said "you'll see. It's a secret!" When we got home, he ran for the magnadoodle and got straight to work and drew the above picture. He then came running to find me and show me what he drew, telling a narrative as he made sure I observed all that was to see in the picture. It went something like this:

"See here?" (pointing at the picture in the upper left corner of the screen, at the same time checking in with me -- referencing -- to make sure I was really looking) "That's an alarm. And see this?" (pointing at the picture in the upper right corner, referencing me again) "That's a sign that means 'do not'." I interjected, "do not what?" He gave me his full attention for a moment and said, dramatically, "do not stand there!" I wondered aloud what might happen if someone stood there, and he said "There would be fire! See?" (attention turned back towards his drawing, referencing me at the same time to make sure I'm following the storyline) "there's fire there, and there's a person who opened the door! It's a boy, he's running away." He confirmed that he saw a sign that made him think about drawing this scenario at the store we were just at.
When he finished his story, he immediately erased the picture and drew a new one (pictured left). It reads "DO NOT BLOCK FIRE EXIT". I just assumed and said "oh, you must have seen that one at the store today, too". He scowled at me (silly Mommy!), and said "no, I saw this sign at a McDonald's play area" (we hadn't been to one in over a week). Oh, I said, waiting for what came next. He didn't dissappoint me:
Here's the third and final drawing of the sequence, which reads "Emergency Exit Only - Push To Open". I noticed his "do not" sign again, but he told me that this time it means "do not open the door". I wondered aloud what would happen if someone opened the door, and he said that the alarm would go off (pointing to his picture of the alarm and making some impressive whooping noises) and it would be an emergency. He then told me that "everyone would run all over the store for all of 15 whole minutes until the alarm stopped." (He runs around with arms waving over his head to demonstrate.) He assured me that this was NOT at the same store we were at today, but at another store entirely.

So let's see, what have we got. Experience sharing. Referencing. Flexibility. Creativity. Episodic Memory (one thought reminds him of another experience of his that he wants to share).

Obsession? I don't think so any more. Special Interest? Yeah, I think that's closer to it. Something he wants to -- needs to even -- share with me, in pictures, story, and dramatic reenactment.

I'm not so bothered by the sign talk anymore....

Wednesday, April 25, 2007

homeschooling this week (and every week hereafter)

I just wanted to reiterate, in case anyone is wondering what happened to my weekly posts about homeschooling, that I'm now blogging about our homeschooling activities and other parts of our lives on my newer blog, Along The Crooked Path. I invite anyone who cares to have a peek into what we're doing from week to week to take a looksy over there.

I'll keep on posting stuff related to Autism and RDI here, so please keep checking in here occassionally too. But I do think, given my recent shift in focus with my kids, that the other blog will get updated much more frequently than this one will.

Tuesday, April 17, 2007

banjo boy

This blog title brought to you courtesy of Ryan Shupe and the Rubberband -- that's the title of Jacob's favorite song by them, Banjo Boy. He's insiting that he IS the "banjo boy" and proved it by creating his own banjo out of zoobs and a plastic golf club (see left).

As I've mentioned elseswhere on this blog, I've been taking Jacob to music classes since, well, forever. I think we started with the Kindermusik program when he was about 8 months old, because I love music and I wanted it to be a part of his life too, and in my heart I just knew he was going to love it. When he started having massive sensory problems with being in the class (which was pretty much right off the bat), I chalked it up to fussiness and kept on taking him, even though it was an hour away and rarely did we make it through an entire class without having to leave due to incessant screaming. Many times we never even made it into the building. Half the time when we did make it in, we couldn't get him into the classroom. And then half the time we actually got him into the classroom, we had to leave as soon as the first transition occured (which he couldn't handle at all). Yet I still shelled out the $$$ (oh, to have that back to use in more constructive ways now!) for tuition, and attended as much of the classes that I could actually get in the door for.

Then we found out about Autism and Sensory Processing Disorder, and had an answer as to why Jacob couldn't handle music classes.

Soon thereafter I discovered a family music program that I liked much better than Kindermusik. It was Music Together, and several months before Jacob's official Autism diagnosis, we switched from Kindermusik to Music Together. It not only was a better fit for our family (because Zoo Boy could participate too, on his own 6 month old level), but also because Jacob never got upset while he was there, at least not to the point where we actually had to leave the building. The reason for the difference? I have NO idea, to this day. Honestly, I just think the "vibe" was better in that classroom. He instantly fell in love with the instructor (so did I, she totally rocks!) and the more laid back atmosphere. He wanted to go sit under a chair for the entire class? Cool! He wanted to hang onto the bells long after they were "supposed" to be put away? Why not! He wanted to sing out of turn? Awesome! He wanted to dance during lullabye time? Go for it!! The openly accepting attitude towards ANY display of musical interest was bolstering both for him and for me.

He's now in a newly-launched (just this past school year) "big kids" program for Music Together for 5-6 yr olds, which also includes parents. The kids are learning about music theory, tones, notes, scales, and all sorts of other things I have very little hope of ever comprehending, even though I follow along in class and try my best not to embarass my kid. But not a problem for Jacob -- he's soaking it all up like a sponge. He quizzes me daily on the material covered in class. I consistantly fail. He'll pick up song lyrics, sing the song, then convert it (properly) to the do-re-mi s and the do-da-de s and the hand motions and everything else his beloved instructor spits out in class. Then he'll play it on his xylophone. Then on his ocarina. Then on his steel drum. All of which he taught himself to play just from the instruction booklets that came with them.

For a lot of years, Jacob wouldn't let me sing. As it turns out, he probably was just being a good critic. His music teachers have long suspected that Jacob has perfect pitch, which means that my not-so-perfect pitch was probably greatly disturbing to him. I'm no slouch in the singing department, by the way, I did sing semi-professionally throughout highschool and college. But I'm no where near perfect, and I'm more than happy to admit it. He lets me sing now (thank goodness for RDI and his growing acceptance of less-than-perfection), but he won't sing melody WITH me -- he insists on singing harmony to my melody (which probably bothers his ear less than his perfect tone overlaying my imperfect one on the same line of music). And it's seemless -- he hears me sing a song even once, and he's got the harmony all prepared for the next verse. (Yet, if I ask him what song he's singing, he'll fluidly sing the melody line instead.) It's downright disturbing.

I spoke with his music teacher before class this past week. I was curious about how his musical educational development measured up to his peers, as it just seemed a little, well, astounding to me. She just shook her head at me, and told me that she's long known how musically abled he is. She said that she only knows of one other child his age with the same level of musical mastery (I resisted asking if it was a child on the spectrum....). She also said that there are several by-audition children's choruses in the area who would die for the opportunity to audition him, but she's been hesitant to say anything to me, not knowing how I would respond.

I stared blankly at her for a little while. Two overwhelming thoughts kept running through my mind.

The first was that Jacob is extremely compliant and willing to do just about anything I ask of him. If I asked him if he wanted to go down this road, he would enthusiastically agree and off we'd go on a possibly never-ending cycle of auditions, rehersals, performances. But it would be MY decison, not his. I don't think he's yet capable of making that sort of decision for himself -- if I gave him a choice of music, dance, baseball, soccer, karate, theater, basketball, gymnastics, he'd say yes to them all. And, from what I've seen, he's pretty good at them all. Same way he's good at reading, math, and other things that require memorization, persistance, and concentration -- the strengths of his Autism. I could probably pick any one of those things for him to perseverate on, and he would shine, come out at the top of the class, be considered some sort of prodigy. But it would be MY choice, not his. Do I have the right to ASSIGN his passion to him? How would I ever know if this is the path that he would take on his own?

The other thought was that I could possibly be holding my son back from something he's meant to do, something that I would be absolutely THRILLED for him to want to do. I mean, that's why I started him in music classes to begin with, right? Because I love music and wanted to share that love with him? And here he is, with every drop of the talent I'd always longed for myself. Do I have the right to withold that opportunity from him?

And then I thought about the poor, sad, overwhelmed little boy that sometimes made it into music class, sometimes not. Did I really have the right to subject him to that experience, which was obviously more than he could handle right then, just because I knew in my heart that he would grow to love it some day?

I smiled at his instructor and thanked her for the reccommendation. I told her that when Jacob comes to the decision that he's ready to audition for a group like that, I will most certainly make arrangements for him to pursue his passion -- whether it be in music or any other opportunity he wished to follow. If there's truly talent there, I don't see how waiting a few years is going to matter. Because it's not just talent that matters, it's passion. And I won't begin to pretend I could guess correctly at what his passion(s) in life will be. That will be up to him. In his own time.

Thursday, April 05, 2007

shout it from the rooftops!!!!!!!

It happened! It finally happened!

In news that Jacob is sure to later yell at me for announcing publicly, I want to share with the entire world that, for the first time today, and from this day ever more (or so he claims at least, and his word is good enough for me):


Can you hear the noise-makers going off, the confetti showering from the sky, the doves being released, the cork popping on the champagne bottles?!?!?!? This is news of GARGANTUAN proportions!!!

Why now? Why at 6 years, 5 months and 6 days?

Because, as his RDI consultant and I determined yesterday, by a measure of RDI stages he's mastered, he's developmentally at about 3 years of age (probably a little further along). And, as I've been suspecting and will continue to believe unless given proof otherwise, he's now on a normal developmental path. And..... and THAT'S WHEN KIDS POTTY TRAIN. It's just the natural progression of things.

No bribes, no begging, no coersion. A little bit of discussion about it. Especially two days ago, when, well, to put it delicately, there was poop in more places than just his pants, the bathroom not being one of those places. That's when we had the "pullups aren't made to contain that amount of poop" discussion. And I suggested that perhaps it might be time to start putting that poop where it belongs -- the toilet -- like the vast majority of big boys like him do. He nodded his head somberly at the time, apparently giving it a bit of consideration. Later that morning, he refused to watch a once-beloved Baby Einstein video that Zoo Boy wanted to see, claiming that it was "for babies and toddlers, I'm a big boy, I'll go read in my room instead". And so he did. So he's definitely been mulling over his growing up.

No bribes, but I did break out a set of legos I'd been saving -- his first "real" legos (we've got a massive set of duplos that the kids have fun building with). As you can see above, he's pretty thrilled to have yet another building medium to practice those great visual problem-solving and spatial orientation skills everyone was raving about at the IEP meeting.

It's a red-letter day in our house! And that letter is P for POOP!!!

Monday, April 02, 2007

IEP, yipee

No, seriously, it wasn't that bad. In fact, it was even, well, fun. In a better-than-a-poke-in-the-eye sort of way. But really, the pressure truly was off given that all of us present were well aware that there wasn't a snowball's chance in Haiti that we were going to actually USE this IEP. So the atmosphere was relaxed and jovial. Well, as much as could be expected anyway. They weren't exactly serving cocktails.

The cast of characters included myself, the SLP (the "head" of Jacob's "team"), the OT, the School Psychologist, the School Nurse, the Principal, the Special Education Teacher, and a First Grade classroom teacher. We all greeted each other warmly, except for the Psychologist who didn't know anybody and had to be introduced. I guess my insincts were right on her, this was definitely her first IEP meeting at this school, othewise she'd already know the key special services players.

They let the rookie start. She presented a very detailed description of Jacob's history, and the results of her testing, although when she got near the end, she was hurried along a bit by the Team Leader, because there was a lot more results and reccommendations to go through in our hour slot, and she'd taken up about half of it. In the end, her basic assessment boiled down to a very bright Autistic child with deficits in abstract conceptual thinking. Fair enough. Except maybe the Autistic part. Well, Ok, so I guess technically Jacob IS Autistic. Was Autistic? I dunno. But anyway, she seemed to find it pretty incredible that he has moved from "severely Autistic" on the CARS to "mild to moderate Autism". I reminded everyone that Jacob's sensory issues cause that CARS score to be dragged down considerably. But I don't think anyone was willing to hear that he's quite possibly not on the Spectrum anymore, so I didn't quite go there.

Next was the OT. She presented the results of the Sensory Checklist she had me fill out, which found that he has significant problems in 2 areas, and minor problems in a few others, but that in general it represented a vast improvement over where he was at when we pulled him out of school (i.e. prior to starting Sensory Integration Therapy with him). She went on to describe the facility where he gets his OT/SIT now, emphasizing that the things they do there and the sorts of equiptment they have are just not possible to implement in a school setting. (Well, sure they are, it would just cost a lot of $$, so nobody is WILLING to do that.) And she said that yes, indeed, he should be continuing to get those services.

Up next was the Special Ed teacher. She presented her findings -- all Kindergarten Markers met or exceeded, and went on to describe the two written tests she gave. Before she started with that 2nd piece, I said "what everyone needs to know first is that Jacob has received absolutely no instruction in writing", and she laughed and said "yeah, you should have seen the look she gave me when I pulled out the pencil and booklet." I said "Yup, I thought you were completely out of your mind." But she presented the results, and turns out he tested in the average range for a child mid-way through the first grade. She identified his areas of challenge (other than actually holding the writing implement) as being reading comprehension (although his comprehension is at a mid-first grade level, his decoding skills are endless -- she couldn't find a ceiling, the child can pick up anything and read it to you -- so while he's actually above grade level in reading comprehension, he's far behind where he should be compared to his decoding abilities) and retelling stories. Her reccommendations included a once monthly consult with his classroom teacher, but she didn't think that any other academic services were neccessary.

The SLP went next, and she presented all of Jacob's test results as being in the average range for his age, with the exception of expressive vocabularly, which was in the high average range. She reported him having deficits in retelling stories.

The school nurse was last, which was a pretty quick report, since Jacob has not had any major illnesses or injuries since his last triennial review, 3 years ago of course. In fact, I think I just said more than she did.

Then it was my turn. I stated the reason I was homeschooling for the coming year as follows: 1. He needs to continue with his SIT therapy (as pointed out by the school's OT) and that would mean he would be missing 1 day per week, which would be very disruptive to both Jacob and the classroom. 2. We have identified via RDI that he is at a developmental level that is not consistant with academics yet. 3. We are going to be implementing the Enki Education Kindergarten curriculum, which has an emphasis on story comprehension and retelling of stories, and the RDI curriculum has an emphasis on conceptual thinking. Backflips of joy nearly broke out from the team members.

In summary the IEP reads sort of like this: Jacob qualifies for Special Services under the primary disability of Autism. We offer the following accomodations and reccommendations (as above). Mrs. Moon refuses all services. Next IEP meeting to be scheduled at whatever time Mrs. Moon decides to re-enroll Jacob's in school, allowing for enough time for testing and placement assessments (so in the spring of the year before re-enrolling him in the fall of the year).

We all shook hands and left on a happy note.

Since we DID write an IEP, I will have to file a Notice of Intent to Homeschool (which is a "suggested procedure" in our state, rather than a statute, so legally I shouldn't HAVE to do it -- but we've now written an IEP, with my full knowledge that SAYS that I'm homeschooling, so the paperwork all has to match up). Which is really no big deal -- it just means that I'll need to meet with someone from the School Board next spring for a "portfolio review". Which is scarier than it sounds, really I just need to bring in a bit of proof that I've been doing something with my kid other than letting him play video games all day. But it's still something that, in the future, I'll make a point of avoiding, making it very clear on the form that it's for the 2007-08 school year ONLY.