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…the tastiest thing you have eaten all day is your fish-oil supplement.
…you consider clicking on the “Support” tab in the upper right corner of your blog dashboard before you realize that it means technical support.
…you hear a bus and you think, “OMG, is that my daughter’s bus? Is it time to pick up my son already?” and then you panic as you realize that it is after 4:00, and you don’t remember receiving your daughter’s bus or going to pick up your son, but then you realize that your daughter is watching TV in the other room and your son is playing on the computer not six feet away from you, so you must have picked them up and are just losing your freaking mind.
That’s what I’m talking about.
I had thought I was going to have a breakthrough a week and a half ago. I was having the most awful week. I went to Elvis’s Back-to-School night, and I was overcome with sadness because as far as my son has come in a relatively short time, I can’t get past the fact that the bar is set lower because of his disability. I love Elvis and part of me wishes he’d never change–just as part of me would like to hold all my kids in their innocent stages forever–but every so often it really hits me hard that this is the proverbial Trip to Holland, and it isn’t mourning that I don’t get to go to Italy, but mourning that Elvis himself will never go to Italy.
I tried to erase that and say “may never,” but I couldn’t type that without thinking, “Right. [In unison now] Denial.” At the same time, it feels like a crime not to have higher hopes. I like to think I do have higher hopes, but in reality I just don’t deal with the future tense. I deal with stuff as it happens, and I don’t have an end goal; it’s just an endless process of trying not to screw up too much.
I find myself getting irritated when someone asks if or when Elvis will be mainstreamed. I say, “We’ll see how this year goes,” and the person says something like, “Well, he could be mainstreamed by second grade, maybe even first grade, you never know, if he has the right supports, etc.”–and I just want to say, “Shut up, I’m not dealing with it yet, just slow down!” I don’t want to speculate about the future because I don’t want to be wrong and I don’t want to be right. I don’t want the responsibility.
So I thought I was going to cry, sitting there in one of the little chairs in Elvis’s kindergarten classroom, with the teacher explaining about circle time and turn-taking and the blue table vs. the yellow table and snack time as a language-building activity–because I am so proud of Elvis and how much he’s learning and so delighted that he loves school, but this is still the land of windmills, and the temptation to tilt at one is just too strong. It hurts me.
Also, I had PMS.
Another realization I had was that I put off seeing my psychiatrist because I don’t like returning untriumphant. If I go back yet again with “Yeah, that medication isn’t doing it for me,” I feel like it isn’t the medication’s failure, but my own. You know that line in The Importance of Being Earnest–”To lose one parent may be regarded as a misfortune; to lose both looks like carelessness”? That’s how my pharmaceutical therapy is looking to me these days. Surely this many drugs can’t be wrong. I must be the one who’s wrong.
And yet I cannot right myself. It is a most frustrating dilemma.
It’s become clear to me, however, that I must schedule more regular and frequent visits to the psychiatrist because I am completely incapable of managing my own mental health. I need structure. I need a framework. I need to blather narcissistically in front of a trained professional who is paid to put up with my crap. Because I am not just a normal housewife with a lot on her plate. I seem to have dispensed with the plate and the stuff that should be on the plate is slipping through my fingers, and let me tell you, there is a lot of gravy there. It’s a mess.
Plus, my metaphor machine is broken. Gentle readers, adieu.
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.
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.
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.
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.
“It doesn’t hurt to ask.”
This has always struck me as not quite true, but as the years go by it proves more and more ridiculous. Of course it hurts to ask. Oh, sure, some questions don’t hurt. “Paper or plastic?” isn’t such a bad question. “Would you like fries with that?” is only slightly more perilous territory. But you’d be hard pressed to find a question that doesn’t hurt somebody at a given time. Bottom line: it may hurt to ask. The variables are “who will it hurt?” and “how much?”
For example, “Did you close the garage door?” is a potentially hurtful question. It means that you personally didn’t close the garage door and were hoping, if not expecting, that the other person would do it. If the answer is “no,” it means that somebody has to go do it, and the fact that you’re the one who asked in the first place implies that that somebody should not be you. Even if that’s not what you mean to imply. Maybe you’re happy to go do it yourself, if you know that it’s necessary. Maybe you enjoy being a martyr. Do I need to mention that no one ever asks this question while downstairs, where the garage door is? And that “Do you enjoy being a martyr?” is another question fraught with peril?
Not that I know this from personal experience. I’m just a philosopher.
Then there are the really dangerous questions, such as “Would you like to go to dinner with me?” “Would you like to buy some gift wrap for my kid’s school fund raiser?” “Can we get together sometime?” “Will you be coming to my Pampered Chef party?” (And there’s always my personal favorite, “Are you willing to babysit my four children, including my almost-four-year-old, not-toilet-trained autistic son with limited verbal communication skills for x dollars per hour this many hours?”) Each of these questions has the capacity to be a real ouch. As in this-is-gonna-hurt-me-more-than-it-hurts-you.
It hurts to ask a question when you’re afraid to hear the answer. It hurts to hear the question when you’re afraid to give the answer. The asker doesn’t like to feel guilty and says, “It doesn’t hurt to ask.” The answerer doesn’t like to feel guilty and wonders, “Why do they have to ask?”
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.
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.
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