Lion and Magic Boy

Eric finally likes to read books instead of crumpling them or ripping them. Oh, not read, exactly, but certainly to look at the pictures or comment on them. Unintelligibly, mostly: he says a LOT of words but no one knows what they are, possibly not even Eric.  But there’s a bookshelf of my books upstairs on the landing that has magnetic attraction for him: he loves those books. Loves taking them from the shelf, loves stacking/spreading them on the floor, loves pushing them off the balcony to fall SPLAT below. (I discourage that, but oh well. Try to tell the boy anything.)

But there’s one book, one particular book, that really seems to call to Eric. It’s not too big, not too small. There’s a pleasing abstract pattern on the cover. He likes to slide it under a closed door sometimes, but most often I simply find him lying on his stomach, gently leafing through its pages, studying them. There are no pictures, just words. Only that book. That one book.

The title of this book? Communication Skills in Children With Down Syndrome.

Eric is a climber. It’s kind of amazing, actually, considering that a year ago he was scooting around the house on his butt and could barely stand. And now he piles pillows up and jumps on them, face first and with gleeful abandon. Or grabs the big pile and rolls on the floor with them, ending up at the bottom of a heap of pillows.

And from time to time he misjudges things, falls off the couch maybe, or bumps his head on the floor or on a table leg. We say, “head bump!” and he shakes it off. No big deal. This is one tough little boy despite all his frailties.

Last night he was building a bridge of pillows across the gap between the couch and the coffee table, the same table where he often perches to consume a snack, and he made a construction error. The pillows fell and Eric became the bridge, suspended across the gap using his lower lip as a pivot point.

I immediately scooped him up and cradled him, calming him quickly. Nathaniel, who usually runs the other way when someone is hurt, grabbed the homeopathic remedy that works wonders for bumps and bruises. Meanwhile, Serena had begun screaming, looking at Eric with horror.

It was then I noticed the blood.

On Eric’s face, pooling in his mouth, all over his shirt front, the sleeves, his hands, on me. It hadn’t been there just a moment before. Huh. I’ve never seen so much blood come out of one child before.

He wasn’t crying at this point and seemed to be enjoying being covered with this red stuff. And we’re talking covered.

So, today, we have one small cut below his lower lip and zero mentions of it. One day he’ll learn to milk this stuff. It totally would have been good for special treatment, but no, we were back wrestling with pillows and large stuffed bears today.

Yes, dear internets, I am a day behind on this NaBloPoMo thing. Not only that, but I am monkeying with the timestamp so it appears that I am not a day behind. So bad.

So here’s an Eric-anecdote for you! This happened this morning:

See this hat?

Well, what you can’t see is how far this hat will go down over Eric’s face. This morning, with his bus beeping outside in front of our house, Eric kept pulling his hat down so he couldn’t see. I kept adjusting it back upward. Then he’d pull it down again. Finally it became clear that he intended on walking to the bus this way, hat pulled down completely over his face. He condescended to hold my hand while we walked (as opposed to Tuesday when he insisted on not holding my hand and then ran and of course fell in the mud). I could feel his body adjust as we got closer to the bus. He could hear it idling there. We stepped off the curb and he thought the bus would be right there and lifted his foot high for that first step. Which wasn’t there. But finally the bus was right there and he stepped right up, two steps at a time, hat over face. And what’s funny is that I know that Eric is the only one of my kids who would have done this; all the others would have, at some point, raised the hat so they could see. But not Eric.

I wrote at Parentricity this week about how Serena’s changed lately. And how, as she approaches her eighth birthday, she’s become a huge delight to be with. Not that she wasn’t before, only there is more so now.

Which is in some contrast to this one, who is experimenting with anger and moodiness:

He has the bershon thing totally down.

1. One of his front teeth is quite worn away on one side because Eric won’t stop grinding them.

2. He prefers to fall asleep with one hand on his belly button. It’s comforting, I guess, though it would drive me crazy.

3. He refuses assistance of any kind while going down the stairs, instead opting to imperiously order me away: “GO!!” and then ascending on his bottom, bump-bump-bump.

4. He drinks from a cup, but about 2 tablespoons at a time. He sits in the kitchen on the floor and commands a seemingly endless supply of tiny drinks, each one downed with relish.

5. All bodily functions are hilarious.

I’ve been largely silent about the incredible pressure Serena felt, and as an extension of that I felt, as a result of our last-minute end-of-summer decision to move the children from their Waldorf school into public school. Public school where the focus is heavily on reading. Public school where nearly every activity throughout every single second-grade day requires reading. Public school where the focus is very different from the Waldorf curriculum that gently encourages the children to really know the letters and all their hidden qualities, ensuring really strong readers by the end of third grade. Public school where for the first time Serena struggled and felt she was the straggler, the new kid, lagging behind.

Every weekday she cheerfully approached her homework, though, and as the weeks passed I saw her progress in terms of the waning help she required from me and the number of spelling words she spelled correctly not at the end of every week (where she never missed one after having worked with the words all week) but in the first-of-the-week pre-tests where she was clearly beginning to apply her new-found abilities. Every night she reads in bed with a flashlight, and there is no part of me that wishes to discourage her from this at this point. I cannot tell you what it means to me that the children adore books and love reading, and with this huge push to catch up, this intense focus on her obvious lack, I was afraid that the light in Serena’s inherent love of books would be extinguished.

It is not, although still I am careful not to push her. I give her books with increasing difficulty and point out how far she has come. Indeed, it appears that she has done the work of two grades’ worth of reading instruction in just two and a half months, and I couldn’t be more pleased.

So she brought her first report card ever home today. It reflects where she was, not where she is now. I expect huge changes in the next one, and she already has set high goals for herself and is seeing them manifest even now. I couldn’t be more pleased that Serena never gave up, never got more than momentarily discouraged , always kept trying, and always did her best.

Nathaniel, on the other hand, is still kicking himself about the low grade he received in one class. It was a 95.

And then Eric’s meeting to discuss his future, his next year at school, was also this week. That’s a bit of a different area. What the district that provides the funding and even the school does is try to give a child the least amount they can as long as they can say the child is progressing.

I, on the other hand, want the best for my child, as does most every parent. Who wouldn’t?

But simply saying, “He’s making progress” isn’t enough for me. Let’s compare his development to someone else, shall we? Then maybe we’ll see that we should be raising the bar. Simply doing more than before, while wonderful, may not be enough. How do you determine a child’s real potential? Shouldn’t we be aiming for the stars here?

In that case, let me see what developmental milestone norms are for typical children and for children with Down syndrome, and then let’s compare Eric to those. He should do at least as well as his peers, shouldn’t he? He would “progress” in almost any environment. Let’s give him some real goals that aren’t just do-able in the natural course of things, but that challenge him.

This appears to likely be a lifelong rant. Eric may never see the inside of a “typical” classroom vs a special needs classroom. And frankly, I have no idea at this point what would be best for him.

But: his report card was all A’s. He met or surpassed every goal. I just wish I had access to the inside of his head to know what he really wants from his life.

[tags]education, special needs, Waldorf education, Down syndrome, reading[/tags]

I know how anxious you are to hear more about Eric. And why not; it’s his birthday weekend!

• His absolute favorite thing in the entire universe is to have water poured over his head in the bath. Red-eyed, coughing, spluttering, he’ll shake his head back and forth really fast under the stream pouring forth from a green plastic cup, and then command me to do it again. Failing that he’ll do it himself.
• Most every question is answered with “yes.”
• Just about anything can be a hat.

Tonight I was getting Eric ready for bed, reminding him that tomorrow is his birthday (oh. should probably let you in on a little secret. have been posting the night ahead since NaBloPoorMe started. so, uh, when you read this, tomorrow will be today. or something like that).

“What do you want for breakfast tomorrow, Eric? Tomorrow is your birthday!”

“Puh”

“Pancakes?” Eric adores pancakes. We have them weekly: whole wheat, homemade, with organic real maple syrup. Really.

Big smile. Pancakes.

Another milestone. I don’t think Eric has ever answered a question before like that. It’s pretty abstract, concepts like tomorrow and what do you want.

“And when you wake up, it’ll be your birthday! And there will be cake, and presents, just for Eric!”

He’s beaming by this point. Sweet dreams, Mister Three, because tomorrow you shall be Four.

Eric turns four on Saturday, a fact that completely astounds me. I had an email this week from a friend who lives far away and who I haven’t seen in a couple of years as a result, and she told me that she, too, thought it wasn’t possible that Eric is four. Two, maybe, but not four. Not in terms of what he does or anything, but in recollection of his time here so far.

But he is doing some cool stuff these days.

Parents with typical kids don’t think about what a huge thing it is, each developmental step. I know I didn’t with the first three. Once you get past the fact that yes, the kid IS developing, one stage, one accomplishment, flows into another and time surges forward and pretty soon you forget where they came from.

With Eric, though, time is slowed somewhat. I like to think that perhaps he enjoys each stage so much, really examines it thoroughly, as an explanation why he spends so much time in each one. Except in the case of language, though: there is a definite discrepancy between what he knows and what he can successfully express.

He’s begun to imitate much more lately, though, naming things, asking for names of things. Eric has been in his own space for so long that it’s very different now, him seeing finally that he’s part of the rest of us and not this separate small being off to one side, observing. So I have asked Nathaniel to name more things for Eric, and showed him examples:

“Chili is a monkey, Eric, a monkey, and he’s furry, and brown. A monkey!”

So you can imagine how it felt to hear Nathaniel saying this:

“This is a light saber, Eric, a light saber. And this is Yoda, Eric, he’s a Jedi,” with Eric dutifully repeating his versions of the words.

Today Eric picked up the small flashlight that Nathaniel pretends is the handle of a light saber, practicing his swordplay with it at odd moments throughout the house while making appropriate light saberish sounds. Eric hefted it in his grip for a moment, looked around the room to see who was watching, then began swinging it around, grinning broadly.

Jedi, check.

And he loves turning lamps on and off. Click-click. Click-click.

And he reads now. Well, “reads”. But that’s huge! Earlier today I enticed him upstairs for a nap by telling him he could take one of the 60,000 catalogs we’ve received so far this season up and look at it on my bed. I had saved him one full of toys so we could name stuff together: truck, horse, blocks. I left him on my bed happily turning pages while I threw stuff into the dryer and came back to find him all excited.

“What did you find? Did you find something you like?”

[he nods]

“Is it a truck?” Trucks are good. We can count on trucks. He nods again.

“Tuh.”

“Really? A truck?” I scan the page he’s looking at. No trucks. He holds his arms up and slightly away from him, the top half of tree pose. I looked again at the page and found the thing he is coveting so excitedly:

It’s pink. It’s a life-size (almost) ballerina doll that a child could dance with, holding her arms up in the position he modeled for me and attaching her little shoes to their feet. Eric wants a dancing doll. This is the first thing he’s seen in a catalog that he wants. Ever.

I’m really tempted to get it for him. Eric could use a friend all his own. And he really likes dancing.

Eric has figured out the dancing thing. For a few months now he’s been opening the [crusty and fingerprint-ridden] glass door to the stereo media cabinet and pushing the button that makes the music come on. All the kids are reeeeeeeaaallly into Blackmore’s Night*, which is fine with me although I burned only 3 CDs and it would be nice to move something else into the rotation once in awhile, but noooooo, kids like the repetition.

So he puts the music on and suddenly the air is reminiscent of nag champa.

And then he begins to dance.

How can I describe this?

Dancing for Eric used to consist of his stomping in a rough circle while holding up one arm and yelling “C’mon!” to whoever else was in the room as a invitation to join him. Eric is a very infectious dancer.

But now he’s got the whole toddler-boogie thing down, wagging his hips from side to side in such an exaggerated fashion I’m sure it will cause him to topple over, but it doesn’t. He would make an excellent pendulum. Sometimes he holds on to some mode of support, giving us a back view.

It’s all quite hilarious, and of course any amount of laughter, suppressed or not, or applause causes countless encores.

Everyone should be able to dance with such unbridled joy.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I’m all over the place today:

1. Carnival of Family Life #74 over at My Wealth Builder. You can even vote for me!

2. An old old post, so old it’s heading towards ironic, finally went live over at Indie Bloggers. There’s so much fantastic content over there that contributors are lining up in droves to be a part of it. Check it out.

3. Today at Strollerderby I’m taking about Big Brother on buses, why we should go back to teasing fat kids, and shilling for our kids.

Oh, speaking of that: need any magazines? Nathaniel’s school is selling them. Seriously, if you need to renew any, now is the time (and I mean you, Mom! call me! deadline is tonight!).

Smooches!

*Have a listen. Start with “Way to Mandalay”.

[tags]dancing, Down syndrome, Blackmore’s Night, Strollerderby, Indie Bloggers[/tags]

The other night was Eric’s Back to School Night, and I left there filled with love at seeing the unicorns drop from the teacher’s mouths as they spoke so eloquently and acceptingly of the children in Eric’s class, children who by the looks of the enormous array of equipment strewn about the classroom have an enormous array of special needs. For instance, putting things in perspective, the woman who sat next to me said she was unsure whether her daughter was allergic to all tree nuts or just to peanuts because she was tube-fed.

Oh! Well! That sort of ended that conversation. Because while Eric has all sorts of developmental delays as a result of Down syndrome and is somewhat fragile medically and maybe some things we don’t even know about, the phrase “tube-fed” just hasn’t entered our casual family vocabulary.

So while I left Eric’s school thinking lovingly of the unicorns, I also left thinking about the fight that’s on my hands, the uphill battle I am likely going to have to wage in order to ensure that Eric has what he needs.

Apparently, it all comes down to funding.

I’ll say right now that all my three kids who are involved in the school system have a wide spectrum of special needs, and in the past month I’ve been evaluating their respective situations to determine what course of action I need to take to go to bat for them to receive the best possible education, an experience tailored to their individual needs.

This should be possible. But it’s not going to be easy.

Nathaniel, on one part of the spectrum, is kind of maybe brilliant. He’s my kid and every parent of course thinks their kid is awesome in some way, but I know that Nathaniel is pretty smart. I was around kids like him through my own educational experiences, and I know what to look for. Hell, I was one of those kids. Right now he enjoys school but a lot of it is busy work for him. He has yet to receive any grade less than an A, and getting less than an A would likely be quite devastating, actually, as his expectations are high. But 5 years of Waldorf school with no actual grades has created in him a desire to really excel now that he’s in public school with grades attributed to everything. Wonderful. But soon he’ll be bored and I want him to continue to feel challenged. I’ve asked for him to be tested for the gifted program and I have little doubt that he’ll qualify, but I wonder if it will be enough. He’s told me already that he intends to skip 7th grade. I imagine it can be done, but there’s a fight ahead.

Serena is also quite brilliant in a whole different way, but she’s less disciplined than Nathaniel, doesn’t have his experience, and doesn’t yet read well. Reading isn’t expected in the Waldorf curriculum to really come together until sometime in the 3rd grade, when all of a sudden kids find themselves reading Harry Potter, so she was right on track Waldorf-wise but is the One Child Left Behind in the skewed world of public school. And this not-reading has put her at a disadvantage and has pigeon-holed her with her teacher, who thinks Serena just doesn’t quite get the work when really it’s about the reading and the distractions and the kids and the fact that everything is new. So I bought Serena some books she CAN read and in a month she’s gone from painfully and haltingly reading a few words to smoothly reading quite a lot of them, entire books full of them. I fully expect her, by Christmas, to be able to read about anything she wants to, but until then will have to fight off the well-meaning but stigmatizing reading help the school wants to offer by pulling her out of class and sending her with the other low achievers to get extra help that I don’t think she needs, at least not from the school.

Eric is, of course, Eric. Every year his educational goals are re-evaluated and new goals set. Fine. The report is called an IEP and his school then uses that in his daily rhythm to determine what his various therapies are like. That’s fine, too. The school district also uses this to determine exactly what “services” Eric will receive: how long a day of school, how many days per week, how much therapy, etc. Not fine, since it is the district that must provide the funding. In other words, they need to see a NEED in order to make any sort of change or increase. Eric’s new IEP will occur next month when he turns 4. Already his teacher and his therapists are totally on board with increasing the length of his school day and increasing his therapies, but I will likely have a fight on my hands to convince the district to fund it, and likely all because when he got put into the system they categorized him a certain way and woe to you if you suggest anythng otherwise. For instance, at this point, from the district’s viewpoint, Eric may never see a classroom of typical kids. Which is wrong.

And while I believe that parents should be their kids’ best advocates, the idea that it’s so difficult, that there are so many hoops to jump through and especially that kids get labeled early making it VERY difficult to later move out of that label, makes me very uncomfortable. Kids change and their needs change.

If only I could get someone to homeschool them all….

[tags]rants, public school, education, special needs, Down syndrome, pigeon-holing[/tags]

One day Eric came home from school, clearly having painted that day. Is the spot an accident or was he remembering a past life in India?

At any rate, he needed to play catch that day.

“You stay there, and I’ll throw it to you!”

Like my haircut?

No?

I’ll think about it.