Category Archive

For the last several weeks I’ve been trying to make this social story for Elvis about using the potty.  Part of the trouble has been images.  Photographs are more concrete than drawings, but there are some things that just shouldn’t be photographed.  So when it came time to do the pages about sitting down on the toilet vs. standing up, I thought I would have to settle for drawings.

My own artistic skills are somewhat limited, though I’m not too proud to put my lack of talent on display for the sake of my children’s education.  However, the best–or least offensive–drawings I could make of sitting on a toilet involved rudimentary stick figures, and I wasn’t sure if Elvis would “get” them or not.  I preferred to have a better drawing.  So I did something that I knew I should not do.  You know where this is going, don’t you? 

Right now you’re thinking, “No, girl, you did not–you did NOT look for toilet pictures on Google Images!”  Look, I said I wasn’t proud.  I knew it wouldn’t be pretty, but I was desperate.  I tried to play it safe.  I tried to find links via autism sites; they were all broken.  I used my inferior Googling skills to try to find the sites the original links were supposed to be linking to.  I Googled “toilet training” instead of just “toilet.”  I did not Google “sitting on the toilet.”  Okay?  I’m not that stupid.  I am only a little bit stupid.  Well, even under “toilet training” there were images I did not care to see.  Gentle reader, you would not believe what pictures people will post of their own kids online.  No, not those kinds of pictures.  But still–nothing you want on your Facebook page when you’re trying to get a job, you know what I’m saying?.  ::shudder::  Learn from my mistakes.  Do not go there.

So after all this suffering, did I even get what I had come for?  No.  So I thought, very well, I will use my rudimentary stick figures.  At least they aren’t DISGUSTING.  Well, to me they’re not.  I couldn’t really say what Elvis would think.  And that’s when I remembered (later than I would have liked, but fortunately not too late) that I own a digital camera and the Fisher Price Loving Family dollhouse–fully furnished!

Here is where you’ll probably want to stop reading.  Heck, you probably should have never come here in the first place.  If you’re still here, maybe you get what you deserve.  But I feel obligated to post the following photographs as a service to any other desperate parents out there who might be Googling “non-disgusting toilet training pictures that won’t get me arrested if the cops ever search my computer.”

I had a little trouble at first with my model.  He’s not the easiest to work with.

See, that just doesn’t look comfortable, does it?

Fortunately, his knees bend.

See, that’s more genteel, isn’t it?  And an equally discreet image of the Greatest Joy of Manhood (according to my husband):

And because my children have a particular problem with pooping while standing:

Yes, I realize that the doll’s pants are still on in all these pictures.  I’M NOT A SICKO, OKAY?  That’s the whole rationale behind this exercise.

Anyway, I’m sorry, I just couldn’t stop giggling this afternoon.  Because I’ve lost my mind, Gentle Reader.  I have lost my freaking mind.

I was just looking for visual supports for Elvis on the internet, and I came across a site that sells autism awareness merchandise–which is all well and good, I’m hip to awareness, I’m hip to merchandise–but some of the items were a little odd.  I mean, bumper stickers and keychains are one thing–well, actually, they’re two things, but you know what I mean.  On the one hand you have your bumper stickers and keychains and license plate holders, and on the other hand you have your totes and coffee mugs and your sterling silver and Swarovski crystal bracelets.  That’s all fine.  But then it starts to get a little weird. 

You’ve got your Autism “No-Sew” Fleece Scarf.  Your Autism Classic Blanket.  Your Autism Fanny Pack.  This is all just amusing to me.  Then there’s the Autism Photo Frame Magnet.  Now, there’s nothing wrong with the basic concept here.  A photo frame using the autism-puzzle motif is no tackier than a tie tack with the same pattern.  One might argue that it’s less tacky.  What I find just remotely disconcerting is that you have this autism-puzzle pattern with the word AUTISM emblazoned over it.  So you have a picture of your loved one and there’s this handy label hanging over their head.  I’m sorry there isn’t a better picture of it.  Maybe up close and personal it looks less bizarre, but I don’t know.  Now, obviously, you don’t have to use this frame for a photo of a loved one with autism.  You could put a photo of your St. Bernard in there.  That would actually be kind of funny, now that I think on it.  But isn’t it still kind of weird? 

I shouldn’t pick on this poor puzzle frame when there are so many more offensive autism-related products out there. I’ve seen autism-awareness t-shirts that made me want to punch someone.  Fortunately, I’ve never seen them on an actual child.  Child-punching is against my principles.

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My awesome sister sent me a six-pack of Reeses Peanut Butter Eggs.  Have I mentioned lately how much I love the crass commercialization of the holiest day in all Christendom?  What makes Reeses Peanut Butter Eggs better than regular Reeses Peanut Butter Cups is that they’re twice as thick and therefore twice as therapeutic.  Which is good because I have some serious self-medicating to do these days.

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I got an e-mail from the district special education facilitator, who says she’s turned in Princess Zurg’s application to the School for Incorrigible Girls, and if she is accepted (and we choose to select this placement), she will probably start March 31.  Her bus transportation wouldn’t start until a week later, so in the interim we have two options:  1) drive her ourselves and get reimbursed for mileage, or 2) send her in a cab at the district’s expense.  What’s funny about this is that when we visited SIG last month, we saw a cab pulling out of the parking lot, and I just said off-handedly, “What if we just had PZ take a cab to school?”  Too bad they won’t pay for a limo.  That’d be sweet. 

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If your child is a Thomas the Tank Engine fan, you should watch this video.  Note that I didn’t say your child should necessarily watch this video.  I’m not sure my two-year-old appreciated the satire, but at least it had a happy ending, so she wasn’t too traumatized.

So yesterday’s visit to the School for Incorrigible Girls went very well.  We visited.  I don’t know if its official description is a “clinical program in an educational setting” or an “educational program in a clinical setting,” but either way, it is what it is.  When you walk in, it just looks like a regular doctor’s office.  That’s because the school is downstairs.  In the basement.  MWAHAHAHAHAHA!  No, it’s not that bad.  There are windows and natural light coming in.  No bars on the windows. 

There is a long corridor with lots of therapists’ offices.  There are two classrooms and there is a common area for full-group activities and a half-gym for PE-type stuff.  The gym looks like a converted chapel, what with its vaulted ceilings and high windows letting in the light from heaven.  The acoustics are…amazing.  I do not want to be there for dodgeball without ear plugs.  They have an art room with a kiln.  A freaking kiln!  No iron maiden, as my husband noted.

Actually, the creepiest thing we saw was the “quiet room,” which, actually, when I think on it, is exactly what a quiet room should be:  a totally blank space where kids can go to de-escalate, without any external stimulation.  There’s no door–and by this, I mean there’s no door, the thing that goes open and shut.  When I mentioned this to a friend of mine, she wondered how the kids got in and out, if they were supposed to climb through a window or something.  No.  There is a doorway, but no door.  So the children are free to come and go; it’s not a check-out-any-time-you-like-but-you-can-never-leave situation.  The walls are totally bare, the carpet an indescript gray, and there’s no furniture.  The walls aren’t padded, but they are reinforced, to keep the kids from kicking holes in them.  (Oh, you look horrified, but that’s exactly what I’d recommend for any quiet room that was housing my child.)  Plexiglass on the windows.  Yes, again, there are windows.  It’s perfectly serene.  No reason it should have given me the willies.  Maybe I just long for a room like that in my own house.  Maybe someday, when we put the addition over the garage.  Ah, dreams.

So the program currently has ten kids total, ages 8-12.  Most of the kids are in the 11-12 range.  Princess Zurg would be one of two nine-year-olds; everyone else is older, including the two girls presently in the program, who are both 12.  (Quoth the director, “One of them is nice.”  Awesome.)  Two or maybe three students have Asperger’s or something similar.  They have a “Rainbow” group for kids on the spectrum.  (PZ likes rainbows–and who doesn’t?)  They have a ridiculously huge staff.  There are more adults than children.  Which I guess isn’t hard to do when you have two teachers, a staff psychiatrist, a clinical psychologist, the program director, and seven interns.  And that’s just for starters.  The academics are very basic–three R’s, not much else.  Maybe an occasional science lesson.  Sugar Daddy asked if they had art, and the director laughed.  They actually have three art therapists on staff, so some kids have art twice a day.  Yes, they have art.  They have a freaking kiln! 

So they have to do an intake evaluation, to see if PZ qualifies for the program.  They have to see just how crazy she is.  Not that these children are crazy, mind you.  Hey, I have a mental illness myself.  I’m being insensitive and tacky, but in that self-consciously ironic way, so don’t judge me, people.  I’m ready to put my child in a psychiatric facility.  I’m just trying to keep it real.

Or maybe I’m trying to keep it unreal.  This is a program for children with “serious psychiatric problems,” which means something different in the educational system than it does in the vernacular.  Apparently.  For the most part this feels like just another alternative placement.  On the other hand, it’s a 45-minute bus ride and we have to account for her whereabouts and goings-on 24/7 and attend family therapy once a week (in freaking Tigard–gaaaah!–am I even capable of saying “Tigard” without the “freaking” prefix?) and the average stay is 18 months.  In 18 months PZ will be in middle school.  I could cry.  That’s what I feel like doing. 

But my mind is not closed.  If anything, after yesterday’s visit, my mind is more open.  Assuming she qualifies, this program is the equivalent of literally tens of thousands of dollars of therapy, all paid for by the school district.  Your tax dollars at work, fellow citizens.  My husband thanks you.  My daughter thanks you.  Her siblings thank you.  And I thank you.

So yeah, that’s where it stands.  We started the paperwork.  We’ll see.  We’ll see.

Q.  What’s awesome about your kid being suspended from school?

A.  You don’t have to dread that inevitable phone call from the principal, asking you to pick her up again.  Yes!

Princess Zurg continues to struggle in school, and we in turn continue to struggle with Princess Zurg.  I am beginning to fear that PZ’s first grade teacher was right when she said there was a narrow window of opportunity for children to learn the skills necessary for school success.  Honestly, I want to puke as I type that.  Well, not “puke” so much as “punch someone in the face,” but you know, tomayto, tomahto.  Anyway, I have never liked the idea of people having expiration dates stamped on them.  Undoubtedly, in general there is such a thing as a “Best Before” date, as the brain develops and eventually starts pruning away those parts that aren’t used (neuroscience, schmeuroscience).  That’s why early intervention is so critical.  On the other hand, when you’re talking about a person’s temperament, how late is too late?  And when you’re talking about Princess Zurg, how much is temperament to blame, and how much can be laid at the feet of her disability?  If we may speak of disability as having feet.  You see the stress I’m under, how it affects the language arts.  You must be patient with me, or read no further.

It was easier when she was in kindergarten, in first grade, and even second grade, to keep things in perspective.  There’s always hope that a five-year-old can get her act together eventually.  What happens in the primary grades usually stays in the primary grades–except when it doesn’t.  When you carry it with you to third grade and fourth grade and beyond, that’s when the future starts looking grim.  Yes, she’s only nine years old now.  But in less than eight months she’ll be in fifth grade, and a year later she’ll be in middle school.  We are hurtling toward the apocalypse, we have not been saved, and we can’t seem to find a church that suits us.  I will drop that metaphor before it herniates, but you get the idea.  I’m scared.

In September things seemed so promising.  Her medication was making a real difference–and I still think it is.  It just isn’t a big enough difference, not where it counts.  The number of aggressive behavior incidents has not dwindled to “zero”–not by a long shot.  And it’s been almost six months, give or take a couple weeks’ vacation.  It’s time for another IEP meeting, time to advocate for my daughter’s interests again, and I’ve got nothing.  No brilliant ideas.  No half-baked ideas.  No gut instincts.  Just nothing. 

What’s going to happen is that our “team” is going to recommend the day-treatment program they first brought up in September.  (You know, the one in freaking Tigard?  You might remember.)  I’ve been trying to find the paperwork on it.  I’m afraid I may have recycled it in a fit of maternal protectiveness–or rather, a fit of self-protectiveness.  I didn’t want to believe I’d ever have use for it.  So I’m trying to do some research about it on the internet.  The web site says it’s a “constructive all-day outpatient alternative to residential care, providing education for children (ages 7-11) experiencing serious psychiatric difficulties.”  Wow, that’s hard-core, isn’t it?  But then, so is hitting and kicking people and making endless rationalizations for your bad behavior.  That’s not autism.  It’s sociopathy.

My husband and I have joked about having her committed, but the sad thing is, a generation ago that’s exactly what would have happened to people with Asperger’s Syndrome.  They’re too functional to be disabled, so they must be sociopaths.  What do you do with children who won’t respond to discipline, besides give them more discipline (which they continue not to respond to)?  It’s all well and good for me, an adult, to experiment with psychotropic drug therapies (you know, the legal ones), but when you’re dealing with a pre-adolescent child whose brain is still developing (rapidly), said experimentation is decidedly unappealing.  In other words, I’m willing to medicate my daughter if medication is what she requires, but this repeated trial-and-error stuff makes me nervous.  On the other hand, we can’t really wait for puberty to run its course, either.  Or maybe we can.  The point is, I don’t know. 

I’m anxious to take action, but at the same time, I hate to be rushed. 

It’s a tad chilly today, which is why I’m wearing a cardigan sweater.  Elvis has recently learned how to button and unbutton, which is why he’s spent much of today buttoning and unbuttoning my sweater. 

One the one hand, yay for fine motor skills.

On the other hand, it is difficult for me to move freely about the house (or anywhere) and get anything done when someone is buttoning and unbuttoning my sweater and every time I go to make a move is screaming, “NOOOOO!”  I just spent the last fifteen minutes standing in the kitchen while Elvis buttoned and unbuttoned and rebuttoned my sweater, and I could do nothing but eat the Cheetos which were just lying there in an open bag on the counter.

So as I was saying with my first hand, yay.

Lately I’ve found myself easily annoyed by autism PSA’s, including the ones by Autism Speaks, as well as the quasi-PSA’s by parents casually discussing their decisions not to immunize their children on the schedule recommended by the American Academy of Pediatrics.  A dear friend from church recently forwarded me a link to this video that Five for Fighting will donate money to Autism Speaks every time it is viewed completely.  She found it deeply moving.  I watched about thirty seconds and became annoyed.  (Sorry, Autism Speaks.  I think I probably closed the window and you didn’t get your money.  I don’t know what came over me.)  She had sent it to me and to another woman in our ward who has adult children with severe autism.  This woman replied to both her and me (as the other recipient of the link) that, with all due respect, she didn’t support Autism Speaks because they promote research that focuses more on genetic causes than what she feels is the real culprit, immunizations.  A few months ago at a ladies’ auxiliary meeting she and yet another woman with an autistic child were discussing the risks of vaccines, as well as gluten and casein, as well as standard hospital OB procedures such as cord-clamping.  She asserted that children born in midwife-assisted births don’t become autistic.  That was news to me, as my one midwife-assisted birth resulted in Elvis.  Of course, mine was probably one of those renegade, cord-clamping midwives–and there is still the matter of me vaccinating all my children on the AAP schedule, not to mention feeding them copious amounts of gluten and casein.  So never mind, I didn’t have a point.

I honestly can’t put my finger on what exactly is so annoying to me.  I don’t care if people want to have their children vaccinated on an alternative schedule.  I don’t think that’s wrong; I’m perfectly willing to concede that it might be right.  The point is, I don’t know.  What I do know is that my child has autism, and I don’t like to think about what the outcome might have been if I’d done this-and-such instead of that-and-so.  It’s not productive, and it makes me feel sad and helpless.  So maybe I just mind being reminded that I let my newborns get Hep B shots in the hospital and again when they were eight weeks old, and that I also let them get the MMR and varicella vaccines as toddlers, when that is apparently falling out of vogue among the I-don’t-want-my-kid-to-have-autism crowd.  It’s a personal problem.

I also want to make it clear that I don’t scoff at people who put their kids on GF/CF diets because the fact is that some children do make miraculous “recoveries” (if you will) from autism after going on that diet or a similar one.  I don’t argue with success.  But when I was researching the diet for Elvis, I had people telling me that I had to give the diet anywhere from three months to a year or more to really know whether or not it was going to help my child.  A three-month trial is one thing.  Heck, a six-month trial is one thing.  A year-long trial–well, I tend to think that is wishful thinking.  Elvis’s development has come leaps and bounds in a year’s time, for what it’s worth, but he–or rather, we–only lasted on the diet for about three weeks.  Might he be a perfectly neurotypical child today if I had sucked it up and thrown out all our ice cream and goldfish crackers?  I wouldn’t know.  I don’t want to know.  It isn’t that I think the GF/CF diet has no merit.  It’s just like one mother at an Asperger’s support group complained about it:  “Here is one more thing you’re not doing to help your child.”  The fact is, the diet doesn’t work for everyone, and certainly the degree of success is not uniform among those who decide that it does work for them.  And yet, when you’ve decided that you’re not going to give it–or any other alternative therapy–the old college try, it’s hard not to infer that you should be feeling guilty.

I admit that I’m contrary enough that if everyone tells me that hydrogenated oils and trans-fats and the “bad cholesterol” are going to kill me and I’m just courting cardio-disaster if I consume such things–I pretty much just want to keep consuming hydrogenated oils with impunity because between the trans-fats and the NutraSweet and the refined flours and the BHT and the phthalates, what out there isn’t going to kill me?  Similarly, what out there isn’t going to make my children autistic?  Every day the list of autism’s suspected causes grows longer, and the risk of autism gets greater.  Just a few months ago, the odds were 1 in 166.  Now they’re 1 in 150.  So far I’m two for four, and I just don’t like being reminded of the odds, especially since these commercials, though ostensibly made for the purpose of increasing the profile of autism research, seem designed to make people afraid–afraid enough to move them to action.  I’m a fan of action, ordinarily.  But I’m not a fan of fear. 

These days, when it’s normal for children to survive childhood–instead of succumbing to those diseases that have been virtually eradicated in the Western world because of widespread immunization–we as parents simply can’t relax and enjoy it; we have to be hypervigilant about every possible danger that remains.  At some point it becomes like superstition:  If I watch my children closely, if I feed them the right foods, if I buckle all their seatbelts and make them wear their bike helmets–then my children will never get sick, will never swallow poison, will never get hit by automobiles, will never be abducted or harmed by others.  If I wait to immunize my children and don’t let the birth attendant clamp their umbilical cords, they will not be autistic.  Of course no one thinks this simplistically, and the fact that we aren’t in complete control of our children’s health and safety does not render the use of seatbelts, child locks and appropriate nutrition pointless.  Similarly, perhaps it’s prudent to immunize your children when they’re older and not to clamp umbilical cords willy-nilly.  I wouldn’t know.  I just know my child has autism, and I don’t like to hear about your pediatrician, who started insisting that his patients follow the modified immunization schedule five years ago, has recently had his first and only case of autism.  If it really is his first and only case, I tend to think your pediatrician has gotten lucky.  At least his patients have.

I don’t like to hear that the odds of a child performing at Carnegie Hall are 1 in 73,000, whereas the odds of a child being diagnosed with autism are 1 in 150.  Never mind the fact that it’s entirely possible for someone with autism also to perform at Carnegie Hall.  Why are you going around telling people that their children are not nearly as likely to live out their dreams as they are to be afflicted with a neurological disorder?  Autism Speaks has changed its ad campaign somewhat as of late.  Now it isn’t so much that children aren’t likely to perform at Carnegie Hall or become astronauts.  Now it’s that the odds of a child catching hypothermia are 1 in 66,000, but the odds of a child being diagnosed with autism are still 1 in 150.  It’s not that anyone’s arguing that you shouldn’t make your kid wear a jacket in February.  It’s the implicit message that we are afraid of the wrong things.  What we ought to be fearing is autism.  Autism is really scary.

Maybe I have the luxury of finding this publicity annoying because my children are not severely disabled.  I don’t know.  I’m not going to argue that autism isn’t so bad, particularly not when I know someone whose children are severely disabled, who will never be able to live independently, will never be able to do most of the things we dream of our children growing up and doing.  There’s a growing “neuro-diversity” movement which holds that autism should not be seen as a tragedy but just another segment of the spectrum that is normal and human.  It’s hard to get entirely behind that argument when you see an autistic person struggle with genuine impairments, particularly when it’s your own child.  At the same time, I don’t often find myself wishing that my children weren’t autistic.  For one thing, I don’t know who those children would be.  And moreover, I do know that everyone struggles.  Life is struggle.  If I could wish away this struggle for my kids, what would replace it?  Would I like it better?  Yes, it’s a monkey’s-paw view of the world, but as Westley said to the Princess Bride, life is pain; anyone who tells you otherwise is selling something.  I don’t mean to be flip–no, I do mean to be flip.  I just don’t want it to seem like I don’t understand what the big deal is.  I do understand.  I’m just annoyed.  I don’t understand why I’m annoyed, I just am.

School started Tuesday.  Today was my first morning getting all three of my school-going kids ready for school by myself.  Mister Bubby’s ride comes at 7:25 a.m.  Elvis’s bus comes at 7:55 a.m.  Princess Zurg’s bus comes at 7:58 a.m.  Tuesday and Wednesday PZ’s bus was running 25-30 minutes late.  Today it showed up on time, which threw me because Elvis’s bus had not shown up yet, nor would it for ten more minutes–not a bad wait, but it’s just that Elvis was ready to go when his sister’s bus got here, but PZ didn’t have her shoes on yet.  To her credit, she was able to get out the door quickly.  She didn’t insist on finishing her breakfast or brushing her teeth.  Ahem.  Of course, her hair was uncombed and she probably had jelly on her face, for all I know, but hey, that stopped being my problem at about 7:59. 

Now it’s just me and the baby, and I can’t believe there aren’t ten things I have to get done in the next five minutes.  We can eat breakfast at a leisurely pace.  I have plenty of time to brush my teeth and comb my own hair, which happens less often than you might think.  Okay, maybe you expect me to have my hair combed less often than I do.  The point is, I fully expect to have combed hair at some point this morning, and that’s a treat.  Yay for basic grooming.

Usually I’m apprehensive at the start of a new school year.  In a way, summer is less stressful because a) I don’t have to wake kids up or have anyone’s hair combed before 8 a.m., and b) I don’t have to field calls from the principal about any “incidents” that may have occurred that day.  Any and all “incidents” happen right before my very eyes in the privacy of my home.  Okay, and occasionally in the grocery store.  This year my major anxiety was finding MB a ride to school, and my husband ended up taking care of that one.  (Thanks, honey.)

I am strangely unworried about PZ this year.  Part of it is that she seems to be responding well to the Zoloft–still crazy, but less volatile.  The other part is I just feel like it’s about stinking time she hit her stride.  This is a ridiculous expectation, of course–kids don’t “hit their stride” just because it’s about stinking time and this foolishness has gone on long enough, missy–they grow and develop at their own pace and of their own free will.  I suppose, technically, that should be “their own paces” and “their own free wills,” but that sounds stupid.  You know, I studied this language in college–English, in case you couldn’t tell–and I even got paid to write in it at one point in my life, but lately I have difficulty stringing more than two words together.  I guess it’s not so much the stringing as what George (H.W.) Bush used to call the “vision thing.”  I have a vision of my words making sense and not sounding stupid, but I have difficulty conveying this vision to the American people.  Also the Canadians.  But I digress.

Where was I?  Oh, yes–I know that this expectation is ridiculous, but it’s there, nonetheless.  It’s deep in me.  I can’t seem to purge myself of it.  I must be tired.  How much longer can this stage of life go on?  We had an IEP meeting for her last week.  I realized as I was going to it that I had no idea what this meeting was supposed to be about.  We don’t usually have IEP meetings before school begins.  Well, it turned out that the meeting was to discuss the possibility of alternative placement for PZ, who had an extremely rough fourth quarter in third grade, and the rest of the team was wondering if maybe the Social Communication Center classroom was not the best place for her after all.  The SCC is basically the end of the line for autistic students in our district, so what did they have in mind?  A clinical day program in freaking Tigard.  They would have bused her, but still–Tigard!  (Have you gathered yet that Tigard is a little removed from our neighborhood?  Does it seem strange that my first reaction was “Tigard!” and not “Clinical day program!”?) 

You know, we’d discussed the possibility at May’s IEP meeting–in very general terms–of considering alternate placements outside the district, should things not “work out” (I’m giggling here) in her current placement.  The district liason told me at the time that she’d like to start researching the possibilities, and I said she could knock herself out because what else could I say?  I’d learned not to close my mind to anything, and anyway, I figured we’d cross that bridge when we came to it.  I really didn’t expect that the bridge would come to be on August 29, a week before school started.  I kind of expected that we’d begin the school year by giving the current placement the old college try and hoping for the best.  I didn’t think we’d be discussing clinical day programs in Tigard–or anywhere.  Not to worry, she’d be able to stay in her current placement for the two or three weeks it took to process the paperwork.  Well, that’s nice.  If they were serious, why didn’t they research this possibility before the meeting in May and have us file the paperwork then?  Does it really seem like a bright idea to put her back in school in a familiar environment with her friends and then rip her out of it after two or three weeks to send her to freaking Tigard?

Fortunately, I was sleepy that day and didn’t have the energy to respond with what I was thinking, which was, “AAAAAAUUUUUUUGHHHHH!”  Instead, I calmly stated that I would prefer to hold off on that decision and give PZ another chance to succeed in her current placement.  I didn’t say it in such a coherent fashion, no, but I was calm, and that was the important thing.  They said, “Okey-dokey” (I’m paraphrasing), and we all signed the IEP and scheduled a meeting for September 27, at which time we’d revisit the proposal.  I should have felt relieved–or rather, I thought I should feel relieved–but I actually just felt sick.  Sure, in my hours of deepest despair I’d considered all kinds of “alternative placements” for PZ, but it didn’t seem possible that it would come to this.  Is my child really that out of control?  Is she really one of those children?  Am I that much in denial?  Are things this much out of my control?

Unfortunately, I don’t have time for introspection because the baby has opened the box of tampons and is disassembling them.  Gentle reader, adieu.

Yesterday I took all four of my children to a birthday party for one of Mister Bubby’s friends.  That is a long story.  It is not an interesting story, so I won’t tell it.  Suffice it to say, we were all at the Pizza Parlor with the Malodorous Indoor Playground, and since there was a surplus of pizza, we found our-uninvited-selves participating in much of the festivities.  When the birthday girl’s mother started lighting candles on the cupcakes, I turned to my friend (who was there with all four of her children under similar circumstances) and said, “This is Elvis’s favorite part of birthdays.”

“Oh, the cake and ice cream?” she said.

“No,” I said.  “Fire.”

I count it a sign of Elvis’s (emerging) maturity that he was able to put up with only one lighting of said candles.  While my younger son alternated taking bites of his second slice of pizza and his second cupcake, my friend and I talked about the progress Elvis is making with his new therapies.

“So–is Elvis autistic?” she asked.

“Yes.  We don’t know yet where he fits on the spectrum, though.  His flavor of autism isn’t like Princess Zurg’s.  When PZ was his age, she functioned at a much higher level.  I mean, she could talk.  And we knew she registered at least half of what we said to her.”

“That’s important.”

“With Elvis it’s like talking to a brick wall most of the time.”

She nodded.  “I know how that is.”

“A brick wall that kicks you and screams really loud.”

“Yes.”

“And can set your house on fire.”

Lately I have more fear of Elvis setting himself on fire, as his new hobby is to walk the perimeter of our kitchen–up on the counters, including the stovetop.  Regardless of whether or not the stove is on.  He really doesn’t mind.  To his credit, he will let me get him down from there.  He won’t come down by himself, though, because he’d rather jump into my arms than onto the floor.  Climbing down by aid of a chair or stool is out of the question.  That just isn’t any fun at all.  I try to minimize the thrill of free-falling into Mommy’s arms, so long as I can pull him down before he actually stage-dives–but it’s still just a big game to him.  And yes, for any of you taking a page from my step-mother’s playbook, we do tell him NO COUNTERS and STOVE=DANGER.  We weren’t born yesterday.  I’m just telling you, it’s like talking to a brick wall.  A brick wall that fears nothing, except dogs.  Perhaps we should get a dog and make it live on the stove.  You think I’m joking, but I actually paused and analyzed the logistics of that option for a minute there. 

Right now the brick wall is pounding on my back and demanding to escorted out of the house, so you all will have to wait ’til the next episode to see what happens.

Now that I’ve had a whole weekend to calm down, I’d like to bring some clarity to the moral outrage of my previous post.First of all, thanks for all the supportive comments.  You all give me more sympathy than is probably deserved, but I know you only spoil me because you love me.

I do not think that Princess Zurg’s teacher is an idiot.  I have met very few idiots in the public school system.  I’ve met people who are rigid, condescending, dishonest, and ineffectual–and a few who could use a seventh grade English refresher–but not idiots.  For the record, I don’t feel that PZ’s current teacher–or any of her former teachers (well, except maybe one…)–were any of those pejorative terms I just used, either.  I am inclined to give individuals the benefit of the doubt–not by nature, but because experience has too often found me on the receiving end of no such benefit.  I feel more frustrated by the culture of school and the institutionalized stupidity therein than I do with the well-intentioned professionals who work with children, especially those who work with special-needs children. 

PZ’s teacher has many years of experience working with autistic children.  She seems like a very nice lady.  I don’t wish to assign her a host of demerits based on my limited interaction with her.  But there are limits to my tolerance, especially after those limits have been tested ad nauseum over three years and I get the distinct impression that I won’t be taken seriously until my child’s behavior proves me worthy of respect.

I understand that these people have hard jobs.  I myself have a hard job, so I think I can relate.  I also appreciate that they’ve been trained and have experience with up to hundreds of students.  This understanding, coupled with my natural tendency toward self-flagellation, has historically prevented me from advocating my daughter’s interests as vigorously as I should.  If my daughter was having problems in school, it couldn’t be the fault of all these nice, well-trained individuals who have made careers of helping children.  It had to be my fault.  If I had done my job properly, she would be succeeding.  Since she was not succeeding, I had obviously failed.

Neither attitude–blame the teachers or blame the parents–is terribly healthy or productive.  We all ought to be cooperating for the common goal of my child’s success in school.  After almost four years, I’m very familiar with the concept.  It’s a beautiful theory, but in practice this is just not how things work.  In practice, the teachers are almost always cast as the reasonable experts, and parents are hysterics in denial.  We have to be dealt with patiently.  Our parenting is only as good as our daughter’s performance.  Of course there are lousy parents out there, and teachers have to work with such parents all the time.  Blah blah.  I understand.  But I am tired of not getting the benefit of the doubt, when I (and my husband) have obviously put forth so much effort toward the Common Goal.

These people are not strangers to my daughter’s case file.  Before she started attending this new school, my husband and I sat down with these people and wrote a behavior plan–a behavior plan which was pretty much ignored in this instance, incidentally.  I was about to say that was a separate issue, but it’s really not.  Unfortunately we are used to having our input ignored or discounted.  Our opinions seem to be valid only insofar as they reflect what the well-intentioned professionals have been trying to ram through our thick skulls all this time. 

I admit that I was in a highly irritated state as soon as I realized that I’d have to drive down to the school just so my daughter could be suspended for ten whole minutes that day.  (I found out later that the behavior-that-shall-not-be-tolerated-even-for-ten-more-minutes-of-school actually started two and a half hours before I received the fateful phone call.  Riddle me that, Batman.)  That probably made me less in the mood to listen to a lecture on my least favorite topic:  how I, the parent, am sabotaging my child’s success in school and life.

Believe me, kids, I have been fielding unsolicited advice long enough to know the difference between just-trying-to-help and just-trying-to-compensate-for-your-parental-shortcomings.  I don’t believe for a minute that the insults are intentional, or that the advice doesn’t come from a well-meaning place.  I no longer speak to my step-mother about my children’s difficulties because every conversation would become a well-intentioned referendum on me and what I was not doing to help the child in question.  “Problem X [Y, Z, or Q] is a very serious problem.  It’s so important that you solve this problem.  I know it’s hard for you, but you have to do it for her [or his] own good.”  And the pièce de résistance:  “You’ve got to be the parent.”

Here’s a news flash for you, lady:  I’m not the one confused about who the parent is.

My step-mother loves my children.  She’s emotionally invested in their welfare.  (And mine, too, for that matter.)  Her concern comes from a good, sincere place–but what comes out of her mouth belies her protests that she only wants to help.  What comes out of her mouth is the implicit message that I care less about my children than she does, and the reason I care less is that I’m too lazy to do the hard work of parenting.  And that was the implicit message coming out of the teacher’s mouth last week.  No, I’m sure it wasn’t what she “meant.”  The thing is, though, that if you don’t mean it, you’ve really got to stop saying it.  And if you’re not going to stop saying it, don’t be offended if I stop humbly taking it.

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Just a couple of addendums–or is that addenda?  addendi?  eh, whatever–PZ did not hit another student.  She hit an instructional aide.  NOT that hitting an instructional aide–or anyone–is okay, but I think it’s important to differentiate between aggression toward peers and aggression toward authority figures (whichever you happen to think is more serious).  PZ never hits other students.  (Why would she?  What did they ever do to her?)  There’s always a first time, of course, but it hasn’t happened yet.I’ve already forgotten what the other addendum was, so I’ll have to get back to you on that.  I’m sure it will come to me eventually. UPDATE:  It just came to me.  I was going to say that overall PZ’s new placement has been very good for her and we remain optimistic about her future there.  I’m trying very hard not to overreact, which is why I blogged my frustrations rather than taking them out (fully–heh heh) on the teacher.  I feel that I am entitled to a little hysteria in private.  I figure that’s what you all read me for, anyway.

…you get a phone call from your daughter’s school, and it’s her classroom teacher telling you she’s getting sent home for the day for hitting.

Me (noting that it is 2:20 p.m. and Mister Bubby is getting out of kindergarten in 10 minutes and PZ’s school, which is 15 minutes away, gets out a half hour after that):  I have to pick my son up from school, so the earliest I could get there is…pretty close to 3. 

Teacher:  So effing what?

Okay, so she didn’t say, “So effing what?” in so many words.  What she said was…

Teacher:  … [complete silence] …

And I just read into that so effing what.  So I said, “Okay, I’ll come get her.”  And then the teacher proceeded to “explain” why PZ had to leave school.  It was because she’s not allowed to hit at school.  PZ thinks she can hit at school, and she just can’t and she has to learn that.

Me:  Yes.  I understand.

Teacher:  What PZ thinks she can do and what she actually is allowed to do…do not meet.

Me:  No.  No, they don’t.

Teacher (for the dozenth time):  But she can’t hit at school.  She thinks she can hit at school, but we can’t allow her to hit at school.  She should never hit anyone at any time.

Me:  Yes.  Well.  I think I understand that.

Teacher:  [What she said before, on continuous loop]

So I pick up MB and we drive straight to PZ’s school.  When I arrive, it is 2:50, ten minutes from dismissal time.  Is my daughter who is too-dangerous-for-school waiting for me in the office, or some other undisclosed location?  No.  She is in class.  (I would learn later on that she never left class.)  The secretary calls down to the classroom for her dismissal. 

PZ and her teacher meet me in the hallway.  Teacher hands me an envelope which supposedly contains the paperwork from today’s incident.  She again explains why PZ is being sent home.  (For those of you who haven’t been paying attention, it’s because she hit people, and she’s not allowed to hit people in school.  She cannot be allowed to hit anyone, ever.  Not at school, not at home.  Here, let me show you her helpful diagram–it really clarified things for me:

HITTING = NOT ALLOWED

Fig. 1.1

Since I had left the other children in the car, I was kind of hoping to get out of there quickly, which was not happening, so I decided to interrupt her detailed explanation and say, “I’m sorry, but is this for my benefit?”

Teacher:  Well, what we try to do here is establish certain rules and let the children know that the rules apply consistently–you can’t do it here, you can’t do it there.  If she hits at home, she needs to sit in the quiet chair for 10 minutes.

Excuse me.  I’m sorry for interrupting the story, but did this person just explicitly tell me what form of discipline I must use at home?  After informing me that I need to stop letting her hit people, of course.  What an enlightening message that was.  It never would have occurred to me to teach my children not to hit.  I thought maybe PZ was the one person on earth who didn’t need to learn that lesson.  That’s why I’ve never imposed consequences for hitting.  Certainly haven’t tried Time Out.  Is that some new-fangled technique or something?  Never heard of it.  Anyway, sorry–back to the story:

Teacher:  …so she just needs to learn that she can’t hit people–

Me:  Yes.

Teacher:  I’m just worried about her siblings.

Sorry, but I have to interrupt here again.  Excuse me?  EXCUSE ME?  You’re worried about her siblings?  My God, that explains everything.  That’s why I’m not supposed to let her hit at home.  My very own flesh and blood may be harmed!  Good Lord, how could I not have seen that before?  It makes so much sense:  she hits people, people get hurt–even her siblings.  If I let her hit at home, innocent children–children her teacher obviously cares very much about–may get hurt.  Am I truly the only person on earth who never made this connection?  Why haven’t you all ever said something to me? 

Teacher:  PZ just needs to learn that she can’t hit people, and as long as she doesn’t hit, I’ll keep her.  It’s just that safety piece I’m worried about.

Okay, here’s where I got annoyed.  I’ve been listening to these professional educator types for the last four years, and I am sick unto death of hearing about “the safety piece,” “the behavior piece,” “the learning piece,” “the getting-along-with-others piece.”  For Pete’s Freaking Sake, will you stop using the word piece when you really mean…NOTHING!  It’s a thoroughly superfluous buzz word, and it’s getting on my nerves!

So to continue–we finally finished that “conversation” and I took PZ out to the car, where we waited behind her bus for 10 minutes before we were able to leave the parking lot. 

As for the “paperwork” in the sealed envelope, it told me almost nothing about what happened.  It said, “Here it is, here’s what PZ did.”  No context or anything.  I actually already knew what she did.  (Hitting–for those of you who just woke up.)  I was hoping to understand what the trigger for this aggressive behavior (which we haven’t seen at her new school up to now) could have been.  Nothing.  Zip.  Nada.  PZ flipped out and hit for no apparent reason.  Which makes sense, because when hitting is so very much against the rules, there can be no antecedent for an incident of hitting.  There’s no excuse, and therefore there is no antecedent.  Everything that existed in time and space before that moment PZ hit someone instantly vanishes; it is a natural consequence of violating the rules. 

Consequences, though, are apparently not my strong suit.  That’s why I keep wondering what on earth happened and how I can keep it from happening again.

Elvis said “Mom” today.

I haven’t heard that word from him in at least a year.  It sounds good.

Thank you, friends, for the moral support regarding Princess Zurg’s IEP meeting.  It’s always good to know my virtual community’s got my back.

Well, that was an ordeal.  I came out emotionally drained but feeling…not terrible.  Which is an improvement over most previous meetings.  We went in thinking we had two options on the table, with us leaning heavily toward one and the rest of the team leaning heavily toward the other, and we ended up going with Door Number Three. 

Door Number Three is the district’s self-contained autism classroom–more properly called by its PC moniker, “the Social Communication Center”–which is an option we’ve been given many times before and that we’ve considered and ultimately rejected, for a bunch of reasons that are too complicated and boring to get into here.  Suffice it to say, some of our original concerns are still valid, but as of this meeting, enough of them have been addressed that we no longer feel justified in our resistance. 

Obviously, it is not our ideal.  Ideally we would love to keep PZ at her neighborhood school, where her brother is, where our community is, and not have to deal with the emotional upheaval such a transition involves–oh, and also have her be successful.  See, it’s that last little part that causes all the drama.  And now I have the anticlimactic outcome that I was hoping for.  We geared up for a fight and decided not to have it after all.

For a decision that looks suspiciously like rolling over, even to me, I’m surprisingly comfortable with it.  I just had one of those painful moments of clarity about 80 minutes (oh yes) into the meeting, when I realized that what’s best for PZ is not what we thought or hoped was best.  There’s plenty of blame to go around, but I figure we’ll all just pass on the blame and get on with the business of meeting PZ’s needs.  I do feel that the journey to this point has been instructive and worthwhile because I doubt we could have gotten our concerns resolved satisfactorily if we hadn’t started kicking butts and taking names. 

To all of you with special-needs kiddos who are not yet in school, I just have to say this:  No matter how well-meaning and pleasant school district employees are, you can never take a passive role in these things.  They aren’t as emotionally invested in the outcome as you are.  It doesn’t mean they don’t care–they just don’t have to care as much as you have to care.

I think this placement will work.  I also think it’s the best chance PZ has of eventually mainstreaming–hopefully sooner than later.  The teacher for the 3-5 SCC has a reputation as a mainstreaming warrior, so that is a plus. 

Another plus is that the woman who was PZ’s1:1 aide for first and second grade is now working in that classroom.  The karma is good.  It will be hard on PZ to leave her current school.  I expect some drama on that count.  But I think we are making the right choice.

The best part is that I get my nice, sane husband back, and I can go back to being the crazy person in the family.  Drinks all around.

Gentle readers, I need your positive vibes for the IEP meeting I’m scheduled to attend in three and a half hours.  As I said yesterday, Sugar Daddy has been slaving over a hot white paper to present to the rest of Princess Zurg’s educational team.  He has been a man possessed.  Ordinarily SD is the incurable optimist in this parental unit, but as of yesterday evening that role is being played by your congenitally cynical Giraffe, which should give you an idea of how dire our prospects are. 

I must say that I have seen my husband angry on many occasions, but I have never seen him so upset as he was last night.  This is not your run-of-the-mill, raving-lunatic anger.  It is cold, sober rage.  I find it disconcerting and just a tad freaky.

There was a time when I thought the educators at PZ’s school and the district muckety-mucks who attended our IEP meetings were sincere, well-intentioned people, with maybe just a mild streak of incompetence.  Over the last few weeks I’ve been disabused of that charitable opinion.  While they’re certainly not bad people, their incompetence is not mild, their intentions are neither good nor sincere, and believe it or not, I’m starting not to like them very much.  That’s a dangerous attitude to have concerning the people who hold your child’s fate in their hands. 

Some friends of ours have a son who is disabled.  I don’t know all the particulars of his condition, but his deficits are, for the most part, in the physical rather than cognitive realm.  He’s a first grader at PZ’s school, and his teacher and the rest of his IEP team have been pressuring our friends to put him in a self-contained special ed classroom because his disabilities are so inconvenient to them.  PZ’s case is complex; the solution to her problem is hardly clear-cut.  Our friends’ case is clear-cut.  Their son is not a “behavior problem.”  He does not have severe cognitive impairments.  He is perfectly capable of functioning in an inclusive classroom with appropriate and reasonable accommodations.  Their refusal to accommodate him is illegal and borders on cruelty.  They seem to be playing a waiting game:  how long can we stall on these accommodations, i.e. following the law, before the parents finally throw up their hands and take their inconvenient child elsewhere?

As I said, their case is not like ours, but the school’s MO is the same:  withhold information and withhold resources–and wait.

I’m going into this meeting without expectations.  I have no idea what’s going to happen.  My hope is that the meeting will be anticlimactic, as these things so often are.  But I humbly request that you say your prayers, light your virtual candles and/or make your virtual sacrifices to your unknown gods on our behalf.  We and PZ will be fine, whatever happens.  We just like us some moral support sometimes. 

Confrontation is bad for giraffes and other living things.

So Elvis had his first day of school yesterday.  I was worried because I was (and still am) pretty darn sure he had no idea what was going on.  He was very happy to be wearing his new backpack.  Sugar Daddy had came home from work to help escort him, so there we were–Sugar Daddy, Elvis, the baby, and I–walking to his classroom, and as we approached Elvis seemed to get this bad vibe, like strange things were afoot at the Circle K.  He didn’t want to go in.  (He actually said, “No!” which was good–or would have been, if not going in had been an option.  Heh.) 

But eventually we coaxed him inside, and within a minute he had made himself at home.  Specifically, the teachers were digging up child locks for the cabinets and talking him down from the tabletops.  That’s my boy.  My little baby three-year-old boy who didn’t understand why I was walking out the door and leaving him with these strangers and tried to follow me out before they shut the gate on him and he just stood there staring in confused silence–

No, I didn’t cry.  (I wanted to, though.)

I was late picking him up that afternoon because the school is in a residential neighborhood I’m not familiar with and I made a wrong turn which took a couple minutes to correct (poor sense of direction, woman driver, you know, etc.) and anyway, when I got there, he was the only child left.  Fortunately, one of the teachers was occupying him with drawing, and he didn’t even notice me at first.  His teacher said he did very well for his first day.  As soon as he saw me, though, he bolted up and ran straight for me and hugged my legs.  He was ready to go home.  He didn’t want to wear his backpack.

I don’t know how I’m going to put this kid on the bus.

The good news:  I can wear my pre-baby jeans again.

The better news:  I can still walk, sit down and breathe while wearing my pre-baby jeans.

The best news:  If I get fat again, I won’t have to go shopping because I will already have fat clothes.

The you-could-read-this-either-way news:  If I get pregnant again, I will have to go shopping because I just donated all my maternity clothes to LDS Family Services.  You may recall that I was keeping all those clothes as some perverse Murphy’s Law form of contraceptive insurance, but I let my better nature overrule my pessimistic paranoia.  We shall see what reward that reaps me.  In the meantime, needy pregnant gals have some cute pregnant clothes to wear, as well as some pregnant clothes they wouldn’t be caught dead in.  Every pregnant gal has to have some of that.

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We had Elvis’s IFSP meeting on Friday, and the long and short of it is this:  he starts pre-school tomorrow.  It’s weird because I’ve never had a three-year-old in preschool before, in large part because I’ve never had a toilet-trained three-year-old before.  I still don’t have a toilet-trained three-year-old, but since he’s going to a special education preschool, they don’t expect him to be toilet-trained.  The toileting routine is, in fact, part of the curriculum.  Your tax dollars at work, fellow citizens.  (Trust me, it’s for a good cause.) The other weird thing is that he will be taking the bus to school.  I didn’t want to put him on the bus, but my alternative is to drive him myself, and being that his school starts at 1:30 and Mister Bubby and Princess Zurg get out of school at 2:30 and Elvis gets out at 3:30, that leaves the baby with approximately zero opportunity to take a nap, and so–deep breath–he’s taking the bus. In other autistic-children news, I had my first IEP meeting for the year at PZ’s school.  I went by myself because Sugar Daddy was watching the other children.  I had not slept well, and I was irritable, which accounts for my uncharacteristic spleen-venting at said meeting.  Usually I take a smile-and-nod approach with these people because I just want to get out of there as soon as humanly possible, but that usually results in spending fifty minutes listening to a laundry list of PZ’s misbehaviors and shortcomings, in the most exquisite detail, followed by ten minutes of strategizing mingled with generous hand-wringing–and I just wasn’t in the mood.  I wish I could recreate some grand speech that I gave them, but unfortunately such a grand speech never took place.  Like I said, I was tired, and I’m not overly articulate when I’m fully awake, so this was no better.  Basically, every time they started telling me something I’ve heard a thousand times before, I cut them off and engaged in aforementioned spleen-venting.  And because they’re professionals, they took it.

This meeting was somewhat instructive.  I learned one important thing:  whatever strides PZ has made over the past three years, they haven’t been good enough to merit an optimistic outlook on her academic future.  The phrase I think I am most tired of hearing is “and this is a huge concern for us.”  I’ve finally figured out that everything is a huge concern.  There are no small concerns.  There are no relatively small concerns.  There are concerns, and they are all huge, all the time. 

They say that women tend to be micro- rather than macro-oriented.  I must say that my parenting experience has forced me to strengthen my macro-orientation, so that I may not despair and ship my kids or myself off to a residential institution.  The side effect, though, is that I have little patience for other people’s huge concerns.  Particularly when I’m hearing them for the fifty billionth time.  The principal reminded me that he’s responsible for 500 other students.  As if I could lose sight of that.  I’m responsible for other children, too.  The world is not a fair place, amigos.  Can we agree on that much?

I feel bad for waxing rude and hysterical on them.  The fact is, they can’t refuse to educate my daughter.  They’re not allowed to say, “We give up.  Take this one elsewhere.”  I almost wish they would.  Instead I get gentle nudges in directions I know are inappropriate for PZ, and we all end up frustrated.

Which reminds me, I need to find a child psychiatrist.  Ever try to find a child psychiatrist?  It’s almost as hard as finding an adult psychiatrist.  For one thing, not many kids can get through medical school before they turn 18.  Ba-dum bum!  (Ordinarily I wouldn’t make such a dumb joke, but I had to cut you all off at the pass.)  There is a disproportionate number of mentally ill people in Oregon.  Remember that the next time we’re in the news.

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Philosophical question of the hour:Why must donuts be so delicious?

This is going to be one of those “Dear Diary, Today I organized my sock drawer” blogs.  I’m just not feeling very witty today.

For those of you who asked, Elvis’s evaluation last week went fine.  I mean, I’m not sure how it could have not gone fine, unless there were a natural disaster or they decided to perform some weird experiments on him.  It went just as I expected–they did their little tests, asked their little questions, and Elvis turned the lights on and off and open and shut the doors repeatedly.  They found him eligible for services and referred him for further testing regarding the autism question, though autism spectrum disorder was their unofficial diagnosis.  It’s interesting to me how one can go into these meetings knowing exactly what’s going to happen, expecting only to receive confirmation of the obvious, and then come out realizing that one was actually hoping all this time for a different outcome.  That never ceases to amaze me.  Anyway, the ball is in someone else’s court at the moment.  I don’t anticipate being contacted about services or IFSP meetings until well after school starts.

Speaking of which, I think I’m the only non-homeschooling parent on earth who dreads the start of school.  I’m not at all prepared for it.  On the plus side, Princess Zurg’s counselor informed us that she supports keeping PZ in the mainstream classroom.  Nice to know we’re not the only ones who think she belongs there.  She also suggested that we consider drug therapy.  We didn’t want to go there, but then, who does?  No one does.  But I’m at the point where I’m willing to consider it.  Perhaps even seriously consider it.  But then, I’m also at the point where I’m seriously considering the gluten-free/casein-free diet.  I can’t believe I just typed that.  One should not confuse “seriously considering” with “enthusiastically considering.”  Frankly, I’m not at all sure I can stick it out past the first day and a half, let alone the three to nine months it takes to figure out if the diet is helping or not.  Theoretically, anything that results in a substantial amelioration of autistic behaviors should be worth trying, and if I were any kind of parent I would consider a severely restricted diet a small price to pay.  It’s just not the same as, say, a food allergy.  If my kid were allergic to peanuts, I would find out pretty darn quickly, and the next course of action would be obvious:  stop feeding your child peanuts or he’ll go into anaphylactic shock.  QED.  This business of removing 3/4 of the recognizable food objects from my kid’s diet on the off-chance that it might result in a less-autistic child–well, it sounds like a pretty miserable and time-consuming experiment.  Totally worth it if it works, but painful either way and especially so if it does not work.  Six months from now I don’t want to be screaming, “We gave up cheese for this???”

It’s telling that half of the web sites devoted to this diet opt to list the foods one is actually permitted to eat when going GF/CF, rather than attempt to list every food that is forbidden.  I’m not the sure the internet is big enough for that.

I can appreciate other people’s success stories, but a parent from the Asperger’s support group in Eugene described the diet this way:  the take-home message is, essentially, “Here’s one more thing you’re not doing to help your child.”  I love my step-mother, but I’ve deliberately avoided talking with her this week because I can’t handle her earnest speeches about how we need to do something with my kids before it is too late.  She isn’t trying to make me feel bad; she’s trying to be helpful.  She does this because she cares.  I understand that she cares, but when she keeps asking me about what I’m doing and what I’m going to do now, I can’t help but infer that she thinks she cares more than I do.  She doesn’t.  I’m tired of feeling like I need to apologize for the fact that I haven’t solved the problem.  I’ve also been informed by one source or another that I’m not doing enough to help myself–that I should be finding people to help with childcare and housekeeping, etc.–and that I should be researching therapies and educational alternatives.  “It’s on my list,” I say.  It’s all on my list, along with the laundry, the forty-seven cups of juice, the shower stalls, and the bill-paying.  It’s not that there isn’t enough time in the day to do all these things.  It’s that there’s not currently enough room in my brain to think all these thoughts.

Tomorrow is Elvis’s appointment with the Early Intervention folks.  I’ve been looking forward to this appointment because something deep inside me believes it will be the beginning of the end of my struggle with this child.  I know, since common sense and my experience with Princess Zurg tell me, that this is only true in the most technical sense.  All personal struggles come to an end eventually, but not usually on my time-table.  It is the largely-suppressed-but-still-kicking optimist inside that keeps thinking the light at the end of the tunnel must be coming up any second now.  I want to see the light very, very badly.  I almost don’t care if I never actually get there.  Just to glimpse it from a distance is enough.  I can easily use my imagination for the rest.

I got my first scare when he was six months old and still wasn’t reaching for objects.  After a few months of physical therapy, he and I seemed to be enjoying the life of a perfectly typical child and his formerly over-paranoid mother.  Good times, good times.   He was saying words by 12 months, using simple sentences by 18 months, looking me in the eye and engaging me in all manner of social play.  I don’t remember when it changed.  One day my husband was expressing concern about Elvis being so single-minded and obsessive and I was telling him he was paranoid–hey, I know paranoid, I was there, remember?–and one of those days after that we had switched places.  I know when my husband starts talking about how worried he’s not, it’s time for me to start worrying.  We complement each other well that way.

I don’t remember when it started or how fast it went.  All I know is that he used to play games and sing songs and answer questions and say “I love you.”  I can’t stand the thought that I’ve lost that little boy.  I can’t think it because I can’t stand it. 

To talk science education and see the sweet banner Scott designed for my husband’s site, click here.  For duller graphic design and no mention of algebra, stay on the current page.

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Yesterday was Princess Zurg’s annual IEP review, and it went about the same as it always does.  Sugar Daddy and I sit at a table with about half a dozen educators and spend roughly 65 minutes going over crap we already know regarding our daughter’s behavior and academic progress at school; then we spend the next 15 minutes wringing our hands over what to do with her next year. Total number of useful minutes in this meeting:  2Part of the problem is that none of the other members of the team will say what they mean.  The occupational therapist spent about seven minutes trying to say that she didn’t think PZ needed occupational therapy without actually having to say that.  She didn’t want to say it.  I could tell she didn’t want to say it.  She was trying to get someone else to say it without actually saying it, until everyone finally understood what was being said without it actually being said.  Several times during this back-and-forth exchange with the other educators in the room, I just wanted to jump up and say, “Enough!  She doesn’t need occupational therapy!  Just cut the occupational therapy already!  I can’t stand it anymore!  Aughhhhhhh!”Of course I didn’t do that, because I have my dignity.  Actually, I don’t have my dignity.  I was just really sleepy.  (Too much Veronica Mars again.)  And I know from sad experience that overly direct communication with these people can backfire.  If you call them on what they’re trying-to-say-without-actually-saying-it too early or in too straightforward a manner, they will immediately start backpedaling and try to deny that they were in fact saying the thing they were trying to say without saying it.  That’s their way of saying, “You may have gotten my point, but you didn’t phrase it in the proper form, so it doesn’t count.  Let’s start over.”

Part of this is cultural.  Generally, I don’t like to say things like this, but I’ll say it anyway because it’s what I mean even if it isn’t the way I’d like to say it.  All of these educators are women, and women are notorious for beating around the bush in misguided attempts to spare other people’s feelings.  During these meetings I frankly feel sorry for my husband, who in addition to being male is also used to working in an environment where people don’t have time to be considerate of other people’s feelings because time is money and so they just say what they mean and say it in the most efficient way possible, even if it’s rude and/or cruel.  If it’s torture for me to sit there listening to people trying not to offend me with facts that are patently non-offensive, I can only imagine how nuts it must drive him.  Actually, I think SD is so un-used to this form of conversing that he spends more time being confused than frustrated.  The school principal wasn’t at yesterday’s meeting, but when he does come he tends to just sit there and not say anything.  I think he figures that someone in the room has to be quiet and it may as well be him.

I expressed my frustration over this inefficient meeting style to SD last night, and he pointed out that the two of us are, technically, in the driver’s seat, and if we walked into the meeting and said we wanted PZ’s instructional aide to show up to work everyday with pasties, they would still not be able to come right out and say no.  (Sorry, but that is what he said.  Just be grateful you don’t know PZ’s instructional aide and are thus spared the specific mental image I shall be forever burdened with.)  I wish there were some sort of waiver I could sign, swearing that I would not get offended or sue them because of something they said in a meeting.  I don’t appreciate being treated like the neurotic parent.  I am the neurotic parent, but that’s none of their business.  I don’t appreciate being treated like the neurotic parent who’s going to throw a tantrum or call my lawyer the minute one of these ladies says something undiplomatic.  I’m like Tom Cruise cross-examining Jack Nicholson in A Few Good Men.  I can handle the truth, people.  Honestly, I can.

I was hoping that after all the leaps forward PZ has made this year, this might be the first IEP meeting where we didn’t have to talk about “alternative placement.”  Unfortunately, PZ decided to regress back into her psychostudent role a couple weeks ago, and that reminded everybody that although she is doing twice as well this year as last, she’s still only doing half as well as they’d like her to.  Alternative placement was very much back on the table yesterday, although it didn’t come up until the very end.  I knew it was coming.  I was in denial before the meeting started, but when you sit through 55 minutes of people rehashing your child’s shortcomings, you know what they’re gearing up for.  That’s how you prepare a parent to hear the words, “Your child doesn’t belong here,” even though you’re not planning to say those words.

I have naught against the folks at my daughter’s school (other than their infernal tip-toeing).  I think they’re doing the best they know how to do.  They’re between a rock and a hard place, trying to accommodate my child’s needs without compromising the other children’s educations.  I’m between a rock and a hard place, too.  I know my daughter doesn’t belong where she is.  But I know equally well that she doesn’t belong where they want to send her.  I don’t know where she belongs. 

My husband likes to take the “wait and see” approach because he’s an optimist.  Maybe because he’s a scientist, he has a higher tolerance for failed experiments.  I take the wait-and-see approach by default because I am out of ideas.  Maybe because I’m a pessimist, I can’t see my way forward.  That’s probably why, even though I appreciate the school’s dilemma, I can’t be too sensitive to it.  I’ve been looking for a way to make this work for the last eight years.

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Stolen from DiniHJ:

Your type is: INFJ  —The “Know Thyself” Mother

“I believe the joy of motherhood is self-discovery—for them and for me.”

• Sensitive and family-focused, the INFJ mother looks for and encourages the unique potential of each child. Self-knowledge may be her byword. Her aim is to help each child develop a sense of identity and cultivate personal growth. In fact, she may value the mothering experience as a catalyst to her own personal growth and self-knowledge.
• The INFJ mother spends time observing and understanding each child. She is drawn to intimate conversations and seeks a free exchange of feelings and thoughts.
• Sympathetic and accommodating, the INFJ mother strives to meet the important yet sometimes conflicting needs of each family member in harmonious and creative ways
• She is conscientious and intense as well. Probably no one takes life and child-raising more seriously than the INFJ. She approaches mothering as a profession requiring her best self.
  

 

What’s Your Mothering Style?

 

Oh, bitter irony!

Teaching our children about God has been something of a challenge for us.  Princess Zurg, like many autistic people, has a hard time with abstract concepts, and God is pretty abstract.  I mean, you can’t see or hear him–unless you’re, you know, extremely privileged or, alternatively, insane–so how do you explain this sort of Being to a child, especially one disproportionately dependent on visual perception?  (She’s very sensitive to sounds, too, so if God were to start speaking to her and she couldn’t see Him, she would probably totally freak out.  I mean, even more so than you or I would.)

PZ has some logical problems with Christianity.  Take the concept of loving your enemies.  Does that make any sense whatsoever?  No, of course not, and it distresses Princess Zurg no end.  I can’t tell you how many times we’ve wrestled with this problem.  “Sister W says I have to love EVERYBODY,” PZ wails.  “But I don’t!  You can’t love bad guys!”

“Well, don’t worry about loving bad guys for now,” I say.  “Why don’t you concentrate on loving your brothers instead?”

“But I HAVE to love everybody!  They say I have to love everybody, but I don’t love bad guys!  I hate bad guys!”

Well, you know what?  It may be un-Christian of me, but I hate bad guys, too.  Maybe before I can explain to PZ why she has to love everyone from Darth Vader to the bully next door, someone needs to explain to me how exactly I’m supposed to love child molestors and barbaric dictators.  In the meantime, all I can tell her is something along the lines of think globally, act locally.  No, on second thought, I’ll settle for acting locally.  For now, anyway.

PZ has also never been too fond of church.  For one thing, she finds the music ghastly.  I must say she’s not alone in this.  With the exception of the Mormon Tabernacle Choir, we Mormons are not known for our great music.  (I will not address the question of Donny Osmond at this juncture.)  She’s been known to run screaming from the room at the sound of certain hymns.  (Though she’s more fond of the ones they sing in the children’s Sunday School because they often have cool hand gestures to go with them.  No, not that kind.  Never mind.)  She also finds the sermons less than inspiring.  Last Sunday the bishop visited the children’s Sunday School to give a brief lesson, but as soon as he was given the floor, PZ blurted out, “But that will be boring!” 

I’m so extremely grateful that I no longer work with the children’s Sunday School that it fills me with unspeakable joy at times.

She refuses to pray unless she can thank God for the things she’s really grateful for–like Cinderella, horses, and space travel.  This is fine at home because–hey, we figure it’s a start.  It doesn’t go over so well at church, where they try to tell her to praise God for stuff that’s a little less magical by her standards.  She rather resents that.  I think this may even be the root of her enmity with the God of Abraham, Isaac and Jacob.  If He is the One True God, that means that the things in life that she finds most beautiful–unicorns, fairies, enchanted princesses and the like–are only imaginary.  She can’t accept this.  Because she can see Cinderella and flying horses, and just seeing them makes her happy.  Try to tell her what God has done for her lately, and it gets murkier.  If He’s not going to give her a unicorn or the power to operate her own flying carpet, what is He good for?  Sure, He made the whole earth, but where is He when she needs to find those (infernal) teeny-tiny shoes that go on her (Satanic) Polly-Pocket-style dolls? 

The fact that God is not a Magic Eight Ball or the Wishing Star is a hard lesson for everyone to learn, I think.  Answers to prayers are often elusive, obtuse, or just plain disappointing.  The comfort we derive from faith is so personal, and frankly mysterious, that it’s really impossible to explain.  Sort of like parenthood.  You can only know it through experience, and even then it’s too large to understand, much less diagram.

Still, I see a glimmer of hope in the fact that Princess Zurg steadfastly refuses to say Jesus’ name.  Jesus is a little more real to her, I think, because she’s seen the pictures.  (The artistic renderings, anyway.)  She may not think much of his ideas (”Bless those that curse you”?  Excuse me?) or understand much about his mission, but this refusal to name names has historically applied to things that are Too Good.  Horses used to be a word too sacred for utterance, as were the names of her two best friends, whom she called by the last phonemes of their respective monikers for several months, until she was able to acclimate herself to their brilliance and accept them as just another beautiful part of her life.  In my more optimistic moments I think she may be on a similar path to God.

Mister Bubby, though he’s still only three, has always been much more enthusiastic about God and Jesus.  He’s really especially fond of Jesus and enjoys talking about him and watching church-produced videos about his life–though, again, I’m not sure how much of it MB truly understands.  For now I’m satisfied with his interest and willingness to discuss the subject and not run screaming from the room when Jesus wants him for a sunbeam.

Last night Sugar Daddy told me that Mister Bubby was playing a game wherein he (MB) was “Captain Maleficent” and he was fighting bad guys with Jesus.  “As near as I can tell,” SD says, “MB’s concept of Jesus is that he lives in the sky, and he’s kind of like a superhero.”

To which we say–eh, close enough.  For now.