Turn the Music Down

"Mom, turn the music down!" Joey demands as I try to tuck him into bed. He has repeated this request several times every night for the last three, maybe four nights. The problem is, there is no music playing. He hasn't been very interested in his CD player, and the radio in the van is broken. Perhaps he wants me to turn down the music in Andy's room? I can just hear it, if the room is quiet; perhaps Joey is having some sound sensitivities, or problems filtering out sounds, and that faint sound is bothering him?

"Honey, you aren't playing any music," I remind him in my I'm-being-patient voice; the one that would probably infuriate me if I was trying to tell you something and you answered something completely absurd in it.

"Turn the music down, turn the music down!" he repeats, covering his ears as if several bombs were exploding all around the house. Andy's CD has ended. The silence is deafening. There is no music.

"Do you want me to turn the music on?" I ask, trying the same change of tactic I have tried the last three or four nights, trying to coax the words of what he's really asking out of his mouth. I do this because I am insane: trying the same thing over and over, in an attempt to get a different result. For some reason, Joey has taken to saying the opposite of what he means. For example, if something is cold, he complains that it is too hot.

"Turn my music down!" he tries again, just as insane as I am. However, the slight change in the phrase catches my attention: his music, not Andy's music. I go over to the CD player. He bounces and gives me some signals; the kinds of slight changes in his attitude and body language he once used almost exclusively to communicate, and I know so well. I have done the right thing- i have moved over to the CD player. Perhaps he really does want it on; but when I move to press the button, he flinches and covers his ears.

"Turn it down, turn my music down!" he cries out warningly. Connections are made, synapses fire, my brain reads his twitches, his face, the slight turn of a child at once wanting something very badly and yet terrified to get it. I turn the volume way down before pressing play. Sure enough, even with the turning down, it is a touch on the loud side; i quickly turn it down more, so that it is more of a soft-lullaby sort of volume. Waltzing Mathilda wafts gently through the air.

Joey squeals, giggles, claps, bounces. He begins to sing- a little loudly- to the song. He laughs and hugs me, unsolicited.

"Gold star, Mommy! You get a Gold Star!" he laughs, his whole person a beam of sunshine, as I have not seen him in weeks. I leave him dancing and singing in his room. He can do it all night for all I care, as long as that smile stays beaming upon his face.

Silliness

Now available at the Joeymom shop in red, blue, or green.

Come check it out!

Double, Double Toil and Trouble

I have a meeting with all three of Joey's main teachers on Wednesday at 11 o'clock.

Joey has been spitting in faces. He's been hitting other children, especially the classmate he sees the most. He's been screaming. He's been frustrated, angry, depressed, and bored, and he's acting it out for everyone to see.

When Joey was very small- brand-new, in fact- he didn't cry much. At the time, we just thought we had a "good baby"- and in fact, we did. He was such a good baby that if he cried, we jumped, because you knew something was seriously wrong. This was a child who didn't cry when lunch was late, sat patiently through lectures and appointments, and even stayed quietly in a stroller through my entire PhD graduation ceremony. When this child gets fussy, we want to know what the hell is going on.

Mrs. A sent home some "homework" a couple of weeks ago- words to learn five at a time until the end of the school year. Each year the kids have a list of these words, called the "word wall" (because they get posted up on a wall as they learn them). It was the list for first grade, with a note saying, "Joey, please learn these words!"

He knew them already. In fact, he's been reading these words for over a year now.

I emailed her, asking her what I was supposed to be doing with these words. Nine weeks into the semester, and Mrs. A had no idea that he already knew all these words- in fact, we're most of the way through the third grade word wall list. She suggested putting five of them in alphabetical order. Right. Apparently that was tedious (really? no kidding!) so now they are going to have him use the words in a sentence, maybe using the second grade words. OK, that's a little better, it includes some demonstration of comprehension, something Joey does need to work on.

But we didn't work this out before we implemented the lesson. In fact, Joey's needs were not only completely ignored, the teacher- nine weeks into the school year- appeared to be completely oblivious to what those needs are.

I remain not only unimpressed, but I'm starting to get plain pissed off.

She'd better be with the program by noon on Wednesday.

Artist at Work

We got out the sidewalk chalk and got to work today. The boys have decided playing out front is really cool.


Ah yes, the genius at work.


Portraits of a family, by Andy. That's Andy, a T-Rex, Joey, Mom, Dad, and Grandma.



And of course the masterpiece: T-Rex Stomps, by Andy.

I voted.

Did you?

I took the boys with me to the polls. I want to be very clear about this with both of my boys: as American citizens, when they become adults, it is their right to vote, and it is their duty to vote. It is not optional. If you want to remain a free citizen in a free country, you vote. Period. (I also believe you serve on juries. When you are called to jury duty, you serve. Delaying it is fine, but you serve. Trying to "get out of it" is rejecting your duty and right as a citizen.)

I really don't care who you vote for at this point. Just make your voice heard. One of the stupidest things George Bush ever said was that he had a mandate from the people simply because he won an election. He ignored all those votes against him. No one is in perfect harmony with the universe enough to have a "mandate." No one agrees on every issue or policy 100%. It is our job as citizens to let our leaders know how we feel, to make them think about thing from a wider perspective. No issue is one-sided.

Voting is a way to stand up and speak. So stand up and speak. It is a rare right, and we should seize the opportunity for our everyday lives to be heard.

We are here! We are here! WE ARE HERE!!!

Balance

So we took Grandma back to her office after getting Joey off the bus. The afternoon was a perfect temperature for hopping in leaves in front of the office building, so I let the boys do that for a while before the proposed gathering of pine cones from across the street. Grandma has been held up by a phone call, the boys get restless. Snatching Joey off the bus isn't really the best idea, he has no downtime to dispel after-school-mood, so I want to get him engaged.

"Ok, guys, let's go get pine cones."

"OK!" Joey calls back and makes a beeline for the road at his trot-trot-trot. I run, but I am to going to be fast enough; I must rely on my voice to recall him from the blacktop as the car appears around the curve. Of course, it fails; audial processing takes too long. Fortunately, the driver is paying attention and there is a good stretch of road to react on. Joey processes a car is on the road with him and flees to the further side. I can see the driver wave at me. What if it had been someone less careful, someone on a cell phone, someone moving a little too fast?

***************

Allan and I sit in the kitchen, a new breath in our routine. The boys are watching their new favorite, Max and Ruby. Recounting the day, having a drink together, a luxury. Allan's had a new claim. I'm making plans for the holidays. A boy walks in.

He has no shirt on.

Apparently this is incredibly funny, and Joey starts to giggle with his playful, "Oh! I have no shirt!"

"Yes, no shirt," we confirm. More giggles.

Andy appears, also shirtless, but this is less of a shocker. Andy is not as fond of clothes as Joey is. Whatever the joke it, the boys are in hysterics over it. We shoo them back into the livingroom. Adult conversation recommences.

A boy walks in, laughing.

Joey is now completely naked.

This is apparently even more funny than having no shirts, far too funny for articulate speech. Even funnier is Daddy's shocked question, "Where are your clothes?"

The other boy runs in, also naked as a jay-bird, and starts the "neeeee-kiiiiiiiid BUTTS! Nekkid butts! Nekkid butts!" chant.

Adult time over. Boy time recommences. Life is short.

Packing Breakfast: Help!

The internet has failed me. People think to post about pack lunches, but pack breakfasts? Yet our school system (and the surrounding systems) all include breakfast for everybody. Lots of sites for feeding the kids before they go to school- but what about schools where breakfast is served?

I am looking for things to pack for breakfast for Joey. They need to be:

Low-carbohydrate
200 calories or less
Including protein
Not requiring heating of any kind. Items requiring refrigeration needs to be able to withstand being unrefrigerated for about 30 minutes in an insulated container.
Be discrete (sending in lunch items as breakfast stands out big-time)

I'm worried he's going to get tired of yogurt and low-sugar snack-cakes; especially the yogurt. I can switch up the snack cakes (there's plenty of choices and flavors on the market, or I can make breakfast cookies), but portable protein is more of a problem.

I'm also looking for veggie alternatives. Carrots are still ok, but Joey has stopped eating celery (probably just the sharp fall crop, but still...) He does eat cold steamed broccoli. He does not eat bell pepper, cold string beans, uncooked broccoli, or cold peas. :(

Brain already in overload. Need some ideas. Thanks.

Distract and Engage

When I was young, my Dad had a knack for making weekends miserable. Yes, we went and did some fun things. But any time fun was in the cards, my Dad would go nuts about every little thing we did wrong. Shoes in the hallway? Commence yelling. Rooms not cleaned? Commence yelling. Over-excited children getting a little excited? Commence yelling. Everyone was miserable before we could go have fun.

And I have fallen into the negativity trap.

We've been having some sketchy weeks, which means my nerves are frayed. I wonder now if these weeks are not the result of falling into the trap. When one makes it a constant struggle to get through the day, it wears on everyone's nerves.

So I would like to take out this moment of this post to thank my Mom. I still have so much to learn. Growing up, my mom made life positive, even when things seemed to be upside-down. She may think she needs to stay out, to not say anything when I'm doing things she wouldn't do in raising my boys. Fortunately, she's also a good friend and does say something. The boys may not be her children, but I am. I'd rather she told me if I am doing something stupid.

And making holidays a negative experience is definitely in the stupid range.

Now, we have a system for working on behavior issues. If the boys are good all month, they get to go to Chuck E. Cheese. They have three "checks" over the day, which is a little stretched by the addition of "yellow light" and "red light" (so we weren't giving two checks for the same incident- and it gives the guys a little but of warning that something is wrong). Hitting and biting have no lights, just checks. So they earn their privilege.

Hence, holidays shouldn't be in the list of things to earn. Trick-or-treat is just a given. Thanksgiving dinner is eaten. Christmas morning comes (despite the general cultural threat of "be good or Santa won't come!"). Easter baskets appear on Easter morning. Fireworks light up the night on Fourth of July. These things are non-negotiable.

Instead of my father's, "Be good or no trick-or-treat!" (Can we believe that came out my mouth? And not just once! No parent of the year for me!), the more effective and positive method I'm going adopt is my mom's "Distract and Engage."

Distract the kids from the unwanted behavior (like "Don't touch me!" and smacking on each other) by engaging them in positive conversation or activity. When we started getting bored with putting up porch decorations, Mom had me fetch coloring books. When the guys, excited and giddy, started pushing each other's buttons in the car, she had them talk about trick-or-treat: what treats did they want? What costumes would other kids wear? What was their favorite part of Halloween?

No, the pinching the poking did not completely cease. The whining did not completely cease. They remains excited and giddy. But it was positive. It made them think about what was ahead. It kept them engaged in the excitement and happiness, rather than devolving into anger, frayed nerves, and resentment. It gave them focus on the joy and celebration.

And after all, that's what holidays and fun trips and adventures are all about.

Happy Halloween, Part Two

Happy Halloween, Part One!

The Today Show

My mom brought this clip to my attention, and all I can say is, You go, girl. Tell 'em like it is.

What I learned today

For the last couple of weeks, we have asked Joey what he wants to be for Halloween. And he has said he wants to be a Little Bear. Oh, good, that costume is all made.

This morning, he gives me a funny look, and says, "I wanna be Blue!"

"You want to be Blue?" Signing Time is on the TV. No sign of Blue;s Clues anywhere.

"Halloween! I wanna be Blue!"

Oh, no.

And it hit me, He's been saying he wants to be Little Bear because he was Little Bear last year. He associates being Little Bear with Halloween. This morning, he realized he could be anything he wanted. And he wants to be Blue.

Excuse me while I attempt some Halloween magic.

Edit: A photo of the work so far:


Edit 2: Here it is!


Perhaps not on the par of the Happy Kitty Cottage, but I hope it does the trick. I'll probably be doign a good deal of hemming in the morning- it looks big to me.

Wordless Wednesday: Harvest Day

Finding the Key

One of the problems with relying on standardized testing to determine whether children are being educated is that "standardized" and "individualized" are extreme opposites. Even with non-disabled children, you learn more about their ability to take a test than any material that may be on that test. And I grade standardized writing tests for a living.

Joey is a whiz at math. Hey, its numbers, how hard can it be? Numbers, with predictable, unwavering rules and answers! No problemo!

Joey is not a whiz at language. He has a lot of difficulty with expressive speech, he has some issues with connecting events and scanning (just try to ask him to find anything, such as a toy he left in the kitchen).

Word problems can pose a challenge to all sorts of people with language and processing issues. The ability to analyze a statement and glean relevant information is something I have college students struggling with in my classes. However, in standardized testing,Joey will be expected to look at a word problem and come up with the answer. Just like that. It isn't that he can't do it- it is the time it takes him to do it. Not only do you have to answer correctly. Next grading period, he will also have to do it fast.

A little flashback: when I was in fifth grade, we took tests to determine which math and reading sections we would be in. Those of you who were not in the nerd crowd in fifth grade may not realize the consequences of taking those testing and ending up in the wrong section. You were already a social pariah; being a misfit even among misfits was like finding yourself a reindeer with a stupid glowing nose on the Island of Misfit Toys. It was social and academic ruin.

These tests were not just about getting the answers right- you had to get them fast. In the end, kids who finished the test, even though they got questions wrong, were rated higher than kids who got everything they did right, but didn't finish. So I, already teetering on the brink of Extreme Nerd-dom, was pushed over the precipice. Every question I answered was correct. I just wasn't fast enough. I spent the entire fifth grade bored to tears in the second-tier math section. It wasn't math that was the problem. It was processing and writing.

Therefore, I hate timed math tests.

Meanwhile, Joey needs to learn to do word problems, or suffer the same fate, only worse, because what he really needs to do is be in the second-grade math class, not piddling about in some second-tier first-grade math class. But we have to prove it via standardized test- his classwork isn't enough. Especially when he is being assigned "P" grades* in math, despite his boredom.

So we (his case manage Mrs. Huff and I) swung into action, and called his speech therapist, Ms. Nikki, to help. And here is what happened:

Ms. Nikki, being a genius, explained to Joey that word problems were like little stories, and playing a game of "Blue's Clues." He needed to find all the clues in the story, put them together, and answer the question.

She then gave him some word problems, and showed him how to "find the clues", how to figure out how to put them together (creating the abstract equation- are we adding the numbers or subtracting them?), and then how to "answer the question" (such as "how many more..." or "What is the total...?")

Not only did he learn to do it himself by the middle of the session, he was having fun, he was proud of himself for figuring it out (he's really smart!), and he understood what he was supposed to be doing.

She gave him something to connect to, and understand what was expected. She used his love of reading (stories!) with his love of The Mighty Striped Man and his Blue Sidekick, and got him to really be interested in what he needed to be doing. I bet we have very few problems with those word problems- unless being timed gets him.


*In our school, the lower grades do not get ordinary grades. They get "S" (Satisfactory), "P" ("Progressing with Effort") and "N" ("Needs Improvement"). So this lady spent our meeting telling me how great he was doing and how bored he was with the math, then basically gave him the grade of "C" for his math. Huh?

Note to Self

If the OT comes out and asks if she can make some weird, space-age slime with your son to take home, say NO.

Because he will put it in his pocket. And it sticks to fabric. And it doesn't wash out.

Harvest Festival: Part One

A few pics to tide you over until I can find more minutes to write all about it.

What can i say?

So, after a glorious afternoon at Harvest Fest, we settle the boys in for the evening, and then to bed. Andy and I made up our latest installment of T-Rex and the Lizard Friends- they went to the Harvest Festival and had a really great time with the rides and the pumpkins and the haunted house and all.

Then my dear, darling son reaches over with both hands and starts kneading my boobs like bread.

"What is dis, Mommy?" he asks innocently enough and I brush his hands away.
"That's my chest, dear..."
"I like dem. Dey is squishy," he announces and he kneads them again.
"It isn't polite to squish a lady's chest, hon," I try again.
"But I like to squish them!" he protests.

I think I have cracked a rub trying not to laugh.


(***Stay Tuned for Harvest Fest post and pics***)

Saturday Retrospective: The Passing of a Generation

The Heinz sisters (left to right): Junie, Esther, Marie (in lap), and Ruth. Ruth died very young. Marie was my Granny Pinkie.


Esther, Marie, and Esther's husband Fred.


My Granny Pinkie, my Great-Uncle Frank, and my Great-Aunt Barbara Hope. Aunt Barbie Hope was my grandfather's sister, and Frank was her husband.


My Granny Rabbit and Pop-Pop. These were my father's parents. I don't currently have any photos of my grandmother's sisters, Tressa and Pauline (my grandmother was Mary).


The grown Heinz sisters: Junie, Marie, and Esther.


We are unsure who the adults are in this photo, but I suspect they are my grandmother's grandparents (the Heinzes). If I am correct, we have: my great-great grandmother Annie Krug Heinz, my great-great grandfather Evan A. Heinz, my grandmother Marie, my great-uncle Evan (he died when my mom was young), my great-aunt Esther, my great-aunt Junie, and my great-aunt Ruth.


This is the Perrygo clan. I know who some of these people are, but not all of them- and though I know the names, which face does the name belong to? I can say my grandfather had a lot of brothers and sisters, and I think this photo has most of them. Clint, Annette, Margaret, Edgar, Maurice, Elmer, Percy, Watson, and my grandfather, Leroy. It is likely that his parents, Elmer and Rosa, are also shown here.


My Pop-Pop Conway, the real Santa Claus (Mr. King), my Granny Pinkie, and the real Mrs. Claus (Mrs. King). I grew up with these people being Mr. and Mrs. Claus... period.


My grandmother, my grandfather, my great-aunt Betty, and my great-uncle Bob. Bob was my grandfather's brother. Betty was his wife, and she died this morning.

They are all gone now.

Meltdown in 3... 2...

And unfortunately, I am not referring to my children.

Its a rainy day. I've been trying to engage my children in an activity that does not involve the television or the computer to no avail. No interest in making bead-chains, decorations, water-colors. Joey briefly got interested in drawing cupcakes and coloring them and cutting them out, but then he wanted to take them to a friend. Great.

So I give up, put them in shoes and coats to go for a walk in the lull of the rain. We are out to collect leaves and other now-wet items, and Joey had put his paper cupcakes in his bucket, so I offered to hold them. I take the cupcakes and store them in a safe pocket- to be left also holding the bucket. "No, Joey," I hand him back his bucket. "You have to carry this."

And then the "I have to be first" game starts. Joey runs screaming down the street because Andy is ahead of him. And then he gets ahead of Andy, and Andy starts to run to get ahead of Joey. And they are both screaming. And no one is looking at leaves, or acorns, or even where they are going. We live in the town, you have to watch for things like cars.

So I call them back, and try to explain that we are trying to have a nice walk and... Joey starts chewing on his bucket, wandering away down the street, paying not one nevermind to me at all... actually, he's just avoiding me. Right into the street.

So I recall him, and take the bucket so he will pay attention to what I am saying, and he starts emptying his lungs.

We gather ourselves together, and we start to continue the walk...

And it starts to pour. We need to go home. So I say, "It's raining, we have to go home." And Joey commences screaming again, now a good tantrum- how frustrating to be told everything is fine, only to it suddenly not be fine for an entirely different reason.

I melted down on the spot.

I manage to get hold of hands and half-drag my children back to the house, with Joey screeching the whole block home.

************************************
Edited a couple of hours later: JOey is in front of the computer Andy is watching his beloved new favorite, Max and Ruby. All quiet on the eastern front.

LRE Catch-22

A couple Falls ago, we- that is, my sons and I- started attending church. We gave a couple of churches around a try, and had a lot of trouble the minute the word “autism” was uttered- local churches, particularly Sunday School teachers- wanted no parts of it. Some of you may want to drawl on about how Sunday School teachers are volunteers, they have no special education training, they aren’t prepared to deal with special needs, yadda, yadda, yadda. And I say to you: this is supposed to be a Christian community. Joey is part of that community. I’m happy to help and talk with you and even be in the classroom to support him; but you have to welcome him in. We were turned away.

So we ended up in one of the big downtown churches, mostly because when I mentioned that Joey was autistic, the Sunday School supervisor said “OK.” And when I asked to meet with her and with his teachers, they all said, “Wonderful.” And then we met, and talked, and it may not have been a perfect world of support and understanding, but everyone did their best and the teachers loved Joey just as they loved all the other kids in their class, and stressed that we’re all God’s children and He loves us all just as we are- including Joey. Some of the kids liked him, and were friendly; some of the kids didn’t, and weren’t, and it was funny how this was mirrored in their parents’ reaction to meeting him or seeing him. We were glad to have a place where Joey could be an active participant in his community among his peers.

Then we moved on a year, and the next teacher wasn’t interested in meeting, and it was a little less successful a year, and the supervisor that was so willing to listen left. That’s the way Sunday Schools go. Some people stick it out forever, some folks come and go. Andy’s Sunday School teachers had been at it for fifty years.

And then we signed up for Vacation Bible School. I would call that moderate success. We had some incidents, but overall, he had a good time, and all was OK, even though I had to be there with him instead of letting him be on his own a little. The new supervisor of Sunday School mentioned there were plans for a special needs class in the Sunday school, and would I like to get into the discussions about it? There was a problem where the upper-levels (second grade and up) do “Rotation Sunday School.” This means that the kids have rotating themes throughout the year- and they move from room to room for different activities. We had a couple of the older set that couldn’t handle all that change so quickly (Sunday School is only about an hour, remember). So I said I’d be glad to help, and heard nothing more about it.

I’ve been working on a lot of Sundays. The Fall is the busy season for one of my jobs, and as it also has a slow season, I like to try to build up some cash now to tide over the slower months (although it usually ends up making money to play catch-up from being through the slower months). We finally got a chance to go to Sunday School last week, as my work was cancelled for the day. So we went to introduce the guys to their new rooms: Andy to the preschool-4’s (the teachers Joey had his first year), and Joey to the First Grade room.

So I arrive and take Andy to his room, and one of the ladies pulls me aside and asks me about Joey. How is he doing? Where am I taking him?

We got guided not to the First Grade room, but to a new class- the Disabilities class, which currently consists of those two older kids, and now Joey. They have two people who “alternate” covering the class, and they are both special educators in their real lives. (How is “alternating” the teacher going to help kids with trouble with transitions and change?)

In other words, for Sunday School, Joey just got put in the self-contained classroom. And I find myself in a bit of a Catch-22.

Apparently, the first grade teacher doesn’t want Joey in her room, because she had one of the now-older kids, and didn’t know what to do with him. In other words, she was not properly supported before, and has no desire to be left in the cold twice. That may be reasonable enough, but where does that leave Joey? Isolated and closeted in a self-contained environment- a class that I am being given the strong impression was created specifically for him and these two other kids, one of which isn’t showing up regularly, either. He will get one-on-one (or nearly so, if the other kid shows up) attention for reading the little weekly reader things and the week’s Bible lesson. But he’ll be shut away from his friends, from his peers, and they are shut away from him.

I appreciate the effort and thought of trying to support people with special needs, but what about supporting them in the least restrictive environment?

What is more important? Learning Bible stories, or being included in the community of his peers? You probably have figured out my answer to that. If you haven’t, please note nowhere else in this post have I said anything about Bible stories.

That may seem strange to some folks, but we’re Methodists. The Bible stories themselves aren’t nearly as important as the lessons they teach- love, acceptance, honor, respect, living a life that spreads God’s grace in love through positive action and attitude. What good is memorizing The Good Samaritan if you keep passing by on the other side of the road every time you see someone in need? Teach the kid to help the person in need. They can read the Bible story later.

So we are left with a Sunday dilemma. Do we go back? Do we leave Joey in the self-contained room, or do we fight to have him in a room where the teacher doesn’t want to deal with him? Should we be looking for a new church home?