Playing the Autism Card?

So today I called some asshole an asshole in front of a bunch of parents and students at my kids' elementary school. Probably not my finest moment. And I am not anonymous, because most people know Calliope, so Calliope's mom just cursed in front of everyone. Awesome. As the parent of a special needs and constantly supervised child (which child, yes, does weird stuff), I already feel highly scrutinized, and now there's one more feather in my cap. Yay me. So what's the takeaway here? A) Don't lose your cool at your kids' elementary school/use foul language in front of the kiddies. B) Don't be an asshole. Admitting my role here, I will say, the other asshole and I were both probably some degree of asshole. But I'm pretty sure he was the bigger asshole.  Here's the tale:

I ordered a bunch of popcorn for a school fundraiser in Jasper's name so that he could obtain some prize for selling enough popcorn. Popcorn pick up time was today from after school (around 3:40) until 5:00. Knowing I had to take some extra time to pick up the popcorn after school, I called Calliope's therapy center to let them know I'd be about 10 minutes (I figured) late for her 4:00 appointment. I picked up Calliope and Jasper and drove around to other side of the school to where popcorn was being dispensed. When I got Calliope out of the car, she gave me a couple of angry noises and yelled, "Go backward!" I assured her we would still be going to therapy, but we just had to get something first. Lo and behold, there was an enormous line that was barely moving for the popcorn pick up. I hadn't expected that. I started to get stressed because I didn't want Calliope to melt down, as she had shown precursors. I was worried about her having to wait, and I was worried we'd be too late and her therapy would be canceled, which I feared would upset her today. I was annoyed about the long line, and I expressed these concerns to Jasper (pretty sure guy in front of me heard this). Directly ahead of guy in front of me was an official looking woman. I thought she was with the school, and I was thinking I'd have to leave and come back, so I asked if the popcorn dispensing would continue until at least 5:00. She said she didn't know, as she wasn't a school person but was there with her large group of Safe Key kids who made up a large portion of the line ahead. She said I could go in front of them. I accepted. So I guess that was me being a asshole, as I didn't ask permission from the one guy who had been between me and Safe Key kids, which I should have. In my defense, I was stressing out and had kind of forgotten him. I was thanking Safe Key kids when guy starts loudly complaining to the whole line about me moving ahead of him in the line. (Note, I put him and only him---he didn't even have a kid with him---one place back.) I said, admittedly angrily, "Fine, I'll leave." He said, "We're all waiting patiently." I said, "Sorry, are you dealing with an autistic kid here?" He responded, "Oh, now you're using your kid!" Look, I think, under the circumstances, him knowing my situation, his first asshole move was not letting it slide when I moved forward (I hope I would have let it slide under similar circumstances), but hey, maybe he was late to something too. But "Now you're using your kid" is when this guy achieved true levels of assholery, so I responded, "You're an asshole." He then retorted, "Now you're swearing in front of children." And I did feel like an utter dunce for swearing in front of all those people at the school. I apologized to all and went to him and offered a personal apology---"Sorry, I'm stressed." He kinda responded disdainfully. I left to take Calliope to therapy. And I felt pretty shaken. I was upset by the confrontation. I was worried that the elementary staff wouldn't be thrilled, worried that the other parents wouldn't be thrilled.  Honestly, I was not especially worried about the kiddies, as I think they often hear worse and were generally amused by the whole thing. But I'm really, really upset that I apologized to the asshole. Looking back, he was such an asshole. His whole attitude---accusing me of using my kid, condescendingly berating me for swearing in front of the kids. And in the first place (though I sympathize with his annoyance), he should have addressed me personally and not gone for public shaming. Pure asshole. I should have apologized to everyone else but re-iterated that the asshole, however, was exactly as I'd described him. Now, in fairness, the asshole might have another point of view on this. I'm sure I'm not remembering what was said verbatim, as I was a big ball of emotion. Asshole might even be entirely unaware that he's an unbelievable asshole; he probably thinks I'm the unbelievable asshole---two sides to every story and all. But this is my perception.

I guess mainly, I kinda just needed to sit down and vent, but with regard to how not to be an asshole, I'm thinking about how he and I could have better handled the situation. I should have tried to speak more privately to him and not publicly addressed him in response, even though he publicly addressed me. Even better, I should have just left. I should have not let my emotions get the better of me. But also, please never tell the parents of a special needs kid that they're selfishly using their kid. Yeah, we take the perks when Universal Studio gives us the pass so we won't have to wait in as many long lines. Because it's already hard enough managing our special needs kid there, but we do want to have the experience, we want our special needs kid to have the experience, and we want our neurotypical kids to have the experience. And we'll take what help we can get to make a challenging experience better. We take the bus to get our kid to school, because it helps. We take the extra support our kid needs at school, because she needs it, and we can't give her the experience going to school can. We take the nice people at church who are willing to watch Calliope so we can go to class. Okay, yes, we probably take all the help we can get. It alleviates some of the stress---yup, we take it. Is that selfishly using our kid? Look, I'm really not in it for the perks. Thanks to all who help us every day. And there are a lot of you. Thank you. 

Calliope: Missing Pieces of You

When Calliope was born, I wanted to do everything right. I wasn't going to have more children, and I was going to appreciate her and enjoy her to the fullest. I wasn't going to get angry about silly things. I was going to finally get it right with #4. And I did and do appreciate and enjoy her, but I didn't pay as much attention as I meant to, and I didn't refrain from getting angry about things that don't really matter. Of course we never achieve all of our lofty parenting goals, but somehow my failure hurts more with Calliope. I don't remember things well enough. My stupid OCD got in the way too. But I didn't realize we'd lose some of Calliope. I didn't realize she would gradually regress and that pieces of who she was would be lost. Or, at least, that parts of her would become so much more difficult for me to see, if they aren't lost. Calliope was "normal" until somewhere in the neighborhood of three years old. She walked at eleven months. She talked in sentences quite early. She was excited to go to her cousin's house, and she engaged in imaginative play with him. She lit up when Grandpa was around, and she wanted his attention. But somewhere along the way, she started talking less. She became less social. We couldn't communicate with her the way we used to. We were having so much trouble with potty training. She wasn't following directions in her church class for small children. She would run out of the house with no regard for her own safety. I realized I couldn't send her to the preschool where I'd enrolled her because they wouldn't be able to handle her. They weren't equipped for her needs. It didn't happen all at once. Anyway, I don't think it did. At least, it took me awhile to realize it had even happened, that something had been lost to us. And was I so wrapped up in my own mental illness that I didn't see what was happening as soon as I should have? I took her to a developmental pediatrician so that I could get a diagnosis, so that I could begin to seek help, get her into the special needs preschool. I wasn't surprised: autism. I don't know that "autism" means much, other than as a way to qualify for services. It seems to be the word we use for people who have some kind of developmental abnormality when we have found no other known cause. If I say my child is autistic, it could mean any number of things, but it is the word we use, because it's all we have. There is no known cause, but I have spent a lot of time wondering what happened, how it happened, if I could have gotten her help faster, and whether or not I caused it or could have prevented it. 

Most of the time, I just roll with it. I love my girl. She is still full of personality. She is still here to cuddle. Though we have some communication barriers, she still has language. She still makes me laugh. But there are times when I grieve for the pieces of her that I can't see anymore. Sometimes I watch a home video from when she was younger, and I'm amazed at the difference in her---in the past she will be talking and interacting with people in ways I don't see now. And I curse my memory because I can't remember her well enough, and that's true of all of my children's young years, but with her it hurts the most because I have this feeling of losing some part of her and wanting to better remember her before she regressed.

Sometimes it comes home to me, the things I expected for her that aren't happening. Today I was visiting my sister, who was lamenting the lack of a cousin to be a playmate for her little girl, and it hurt that Calliope wasn't filling that role. And I see children her age learning to read, and I wonder if Calliope will learn to read. I pick her up from school and see other children excitedly telling their parents about something they did at school that day, and I want Calliope to tell me about her day. And I worry because right now she's a little girl, and she's adorable, but as she grows up, will people be less accepting of her than they are now while she's small and cute? Because even now, I watch her cousins slam the door when she starts to come into a room, because they don't want her messing something up or because they just don't want her around. My own children sometimes struggle. She can be difficult. She has destroyed their things. She throws tantrums. So what will adult-hood be? How much progress will we make?

We had a similar situation with Jasper. He regressed between ages three and four. But it seems he had developed hearing problems, and once we addressed the hearing loss, the pieces of him that had been lost gradually returned. And something in me keeps thinking and hoping that eventually that will happen for Calliope. We have checked into her hearing. We have checked into her vision. The results of those tests haven't been entirely conclusive, as she hasn't been a cooperative test subject, but there has been no obvious and easy fix. And sometimes when I realize Calliope was somewhere around three years old when she regressed, and that now she is seven---that we've now had over twice as much time post regression---it hurts, and my hope of gaining back whatever it was we lost gets dimmer.

I hope I don't sound like I'm not grateful for Calliope. She's given us more than a few scares, and I'm so glad she's here. I love her as she is, but I do want the part of her I feel is lost or hidden back, too. I wonder if I should feel guilty for grieving what was lost in Calliope. It doesn't mean I don't appreciate her. It doesn't mean I don't see what is still wonderful about her. But is it wrong to grieve for what she (or I) lost? I know it isn't really helpful. Mostly, I avoid dwelling on it, because it isn't useful, and it is painful. Mostly, I just enjoy her as she is, and I deal with the difficulties she brings, because she isn't easy; I'd be lying if I pretended parenting Calliope isn't so much more difficult than I expected. (I never expected "poop smearing" to be a regular conversation topic in my home or to have people wearing elf ears and carrying swords look at me like I'm the weirdo as my son carries my screaming, writhing daughter who has full-on lost it across the Renaissance fair where my car is on the other end of the massive park or to tell my kid to please quit trying to sniff my armpits or that sleeping in would still be a foreign concept when my youngest is seven, for example.) But I try to move forward with getting her therapy and getting her help in school to try to help her to achieve and learn. But sometimes I wallow. And then I go find her sleeping in her bed or wherever she happens to be (though usually these moments of grief strike me at night), and I kiss her cheek, and I am so happy that I have her. I'm going to go do that now.  

POOP!

There's this great picture of me---I'm maybe twenty-two years old. I'm in St. Mark's Square, and I'm covered in pigeons. I wish I could post the picture here now, but it was taken in a different age when we took film to a store and had it developed, and it's in a photo album in a box in Maryland right now. You'll just have to imagine the picture, but I'm utterly darling in it; I promise.  Here's the thing: in an active effort to get pigeons to land on me, I paid for the pigeon food that was being peddled to dumb tourists. I loved the feel of their warm little feet. I didn't necessarily want them to poop all over me (as they did to many of the people in the square that day), but I wasn't too worried about it either. So what happened to that girl who so happily covered herself in pigeons? I can tell you that I miss her. Now I go outside every day and try to clear the yard of bird poo and feathers, so my kids won't come into contact with them. This is a time consuming process. So, these days, much as it pains me to have to disagree with Bert, I loathe pigeons. Am I the only one thinking about all the germs on that feather when I watch Forrest Gump?

Though I do still absolutely wash my hands and wipe doorknobs way too much, since I moved home, a lot of my issues have improved. I think this is largely just by virtue of getting out of my own space and thus relinquishing a lot of control and, what's more, relinquishing some of the responsibility I felt to keep the world safe from germs. But where I haven't been able to relinquish responsibility, where my paranoia remains, and what is currently kicking my butt, is wild animal poo. Yeah, the pigeon poo is annoying (it can---though likely won't---make you sick, but it's unlikely to kill you), but I am straight terrified of mouse poop. See, the whole going insane thing started with mice in my mud room and my garages and cleaning up after them and reading way, way too much about how mice can cause your untimely demise, and thinking about how my children had been in that mud room with all that deadly poop while I was oblivious. Like most people, I used to not think much about mice or their poop (those were the good old days). I'd heard of hantavirus, been mildly disturbed about it, thought, "Well, I don't play with mouse poo," and gone about my merry way. But, in fact, I was wrong. I realize now that there is no way there wasn't mouse poop in my dad's sheds, all over the place at my grandparents' farm, in half my friends' garages, etc. I've learned something about mice: if they can get in, they will, and they are everywhere. I can tell that the garage here isn't sealed against mice, and I am utterly terrified of my family going into it. It is causing me significant anxiety. I feel like I can work on it and be able to let go of worrying about the birds, but I don't see how I can be okay with mice. Now, when I drive around, I look at all the garages I pass and assess their "mouseworthiness".  A good half of them are totally mouseworthy. How are the rest of you people okay with this? Is it because, despite the fact that most of us actually must encounter a fair bit of mouse poop, we don't seem to be dropping off like flies? I try to focus on that, but I can only focus on the 50% mortality rate and this: http://www.cdc.gov/rodents/cleaning/ Okay, it's a total hazmat situation! The CDC says so. But I know people aren't following these precautions. There is no way. I can't even manage it, and I'm totally OCD. I can see no way to seal the garage. I found a few droppings (which I hope were old) and cleaned them, which, for me, was quite traumatic. I go out and check for new droppings (which also traumatizes me), and I don't think I've seen any, but that doesn't help much, since always at any time, a mouse could come in and leave some. When looking for a new home, guess what my top priority will be? Here's a clue: not granite counter tops. It needs to be well sealed against mice. And I'll just have to try to ignore that fact that my kids might encounter mouse poop at other people's homes, because, as I have observed, no one else seems to be worried about it, and half of their garages are open to mice---Hello! How is this not a national crisis?

And, get this, last Sunday, when taking out the recycling, I found a dead mouse in the driveway. Is the universe messing with me? It was awesome for my mental health. Really. Look, predatory animal, thank you for reducing the mouse population, but could you please not leave your dead stuff here? Thanks.

Lice and Snow and Maybe Dying---Oh, My!

Just looking at it makes you feel something crawling around in your hair, right?

I guess I passed another of life's milestones; I had my first experience with lice. I hope "had" is the appropriate word and that we have indeed eradicated the lousy suckers. My brother's family was also infested; he suspects a Comfort Inn our families stayed in while in Philadelphia together. That's not brotherly love, Philly, but I still love you. I didn't love spending hours doing laundry, vacuuming, and nit picking (I will never feel the same way about that phrase), but at least lice don't have germs.

It's snowing today, but it's not Snowmageddon, cancel a week of school, like the last round. I despise snow from the depths of my soul. Partly because it's a wet mess that often hangs around being a wet mess for weeks, and partly because it puts my germophobia on overdrive. Why? There was a time I would have asked that very question. I miss that time. Well, think of all the animal poop in that snow---bird, rabbit, deer, squirrel, maybe even (and this really freaks me out) mouse. Have I mentioned that there is entirely too much stuff that poops all over the place on the East Coast? It must be all this dang life sustaining moisture. Imagine all of that poop sticking to your kids' shoes and clothing as they play in the snow. All of it being tracked into your house, not to mention what probably already made its way inside the kids. Shudder. So, anyway, I grit my teeth and try to enjoy my kids playing in the snow. Then it's showers and disinfecting the wet mess and laundry. The whole process is a huge ordeal for me. But I like the hot cocoa.

Oh, and I got medicated! I've been on it for about three weeks. Nothin' yet. I'm still living in a sort of constant state of panic. I almost always feel like my heart is in my throat. I hope it starts to kick in and that we don't have to go back to square one with something new. I probably still need to look for someone who does cognitive behavioral therapy though. This latest therapist didn't really do anything, other than prescribe some pills, but she didn't mention Jesus or pioneers, so I guess that's a win. 

But what really rocked my world since I last wrote was that I had a cancer scare. It looks like I'm clear. Thinking you might have cancer and waiting to get answers isn't exactly a joyride. So I imagined if I were dying, we'd head back home sooner, and I would wither away while watching my children play in my parents' back yard, in the shadow of my beloved Red Hill, where I used to play. Truly the whole thing was gut wrenchingly beautiful, yet I would rather not be dying. I really prefer to watch my kids play without the whole withering away part. But seriously, I was really very scared. I told myself that if I'm not dying, I will give up this germophobia crap. My imminent demise now seems unlikely (yay!). And yet. I can't give up the phobia and the obsession and the rituals. I really hoped that scare would smack this nonsense out of me, but I have a very tenacious mind. 

Is it Life, or Just to Play My Worries Away?

There's this scene in every child of the eighties' favorite music video that illustrates so well how I feel. A-ha dude's trying to break out of his comic strip box, and he's slamming himself against the walls until he smacks the comic out of himself and becomes a real boy. I feel like I'm slamming against the walls, but I just can't seem to break out of the box, shake off the black and white, and get back to the real me. There are few things that are better in black and white. Once I bought a DVD of It's a Wonderful Life, not realizing it was colorized. It was awful. I couldn't even watch it, and I love that movie. Black and white has its place, but black and white is no way to view the world. It's not black and white. It's full of color and nuance, and if you try to reduce it to black and white, you'll be missing something. My take on germs right now is black and white, and it's not working. The fact that 99% of germs are not harmful and are often helpful should get me to relax and settle for washing hands after using the restroom or after taking out the trash, but instead I'm trying to sanitize every.single.thing that comes into my home, and it's a losing battle. My kids go to school. (I have fleeting thoughts of home schooling, but I'm still sane enough to know that wouldn't be a step in the right direction.) My husband goes to work. So I do what I can. They usually shower or at least change clothes after school/work, and then I try to sanitize their stuff---cell phones, keys, glasses, wallets, credit cards, bottoms of shoes, the floor where the shoes have been, etc.

I try not to keep my family from living life, so we go places, yes (though a large amount of hand sanitizer is employed throughout). We go to the movies and to Gettysburg and to church, but it's hugely stressful to me, because when we get home, it's time for me to sanitize stuff. You don't even want to know what an ordeal shopping has become for me. All of this attempting to sanitize is a time consuming nightmare, and it isn't possible anyway. I try to tell myself that it's a done deal, so there's no point. If there's some horrible germ on the stuff, it's probably already in the kid. Besides, I won't, nor could I, bar friends and family from ever visiting (though it is a much more stressful occurrence for me than it should be as I try not to think about all their non-sanitized stuff). I'm tilting at windmills, so why can't I just knock it off? I keep trying to logic myself back to normalcy, but so far, logic hasn't fixed crazy for me. I feel like I have to do as much as I can to keep my family's environment safe, but in a cost benefit analysis, are my efforts increasing our safety enough to be worth it? I'm pretty sure that's a no. Maybe the song's got it right, and it really is "no better to be safe than sorry." Now go get your A-ha on. I know you want to. (Has the synthesizer ever been better employed?)

And let's face it, even if I ever do shake off the black and white, I'll still never look this cool. 

Hallelujah!

I have not had a great couple of days on the response prevention front. I have not prevented my responses. I have been both obsessive and compulsive.
Check out my hands:

Scarlett O'Hara would say those are not the hands of a lady. That's what too much hand washing, hand sanitizer, and cleaning with bleach (without the proper use of gloves) looks like. I know my behavior is really probably worse for my physical (let alone mental) health than coexisting with the germs, but that's not how it feels. So I keep thrashing my hands and loading on the lotion. The lotion is losing.

See, those cracks kinda hurt, and they are really the least of it, so I have decided I need to look into therapy and medication again. Can't someone just give me a pill to cure my crazy? Okay, probably not. But I'm hoping to bring the anxiety down enough to help me not to engage in the compulsions, thus allowing me to deal with exposure therapy sans having a panic attack every five minutes. Finding a therapist is really a lot more work than I thought it would be. I figured there'd be therapists aplenty wanting to cash in, but it seems there is no shortage of crazy. All week I've been playing phone tag, being told my insurance isn't accepted, being told my particular brand of crazy isn't really this or that therapist's focus (depression people, you are in the money, by the way; they all seem to specialize in that), and being told "not accepting new patients" (this happens a lot---I suspect an above average ratio of crazy people to mental health specialists in the DC area).

My first therapy session was a trip. It was a huge step for me at the time, and I was pretty sure it would show up on some document to any possible future employer in bold letters reading, "CRAZY PERSON ALERT," but I was desperate enough to live with that stigma. I went to my first therapist before we moved. At first she seemed kinda like what I expected. She told me she's really into brain science. She told me that my serotonin levels are probably off. Okay, seems reasonable. Then she told me we needed to get to the root causes of my anxiety, the real issue being fear. That all seemed properly Freudian. So we played a question and answer game.

What are you afraid of? 

Hantavirus. (I was still mostly stuck on one germ then; mouse poop kinda triggered my germophobia going OTT.)

Why?

BECAUSE I COULD DIE! MY CHILDREN COULD DIE!

So the root cause of your issue is fear of death? 

Duh. Mice would just be cute if not for the fact that THEY CAN FRIGGIN' KILL YOU. Sure, getting sick isn't fantastic either, but what really bothers me is the whole death thing.

So you need to stop being afraid of death.

Yeah, not gonna happen. I don't have any plans to discontinue death avoidance.
---
Then things got weird. My therapist, maybe figuring we were the same religion, it being St. George, UT, started bearing her testimony to me. For real. She had been in a car accident and had a near death experience, she explained. And she had seen the light, so you see, there's no reason to fear death; she saw Jesus. And where would we Utah Mormons be if the pioneers had feared death? (I don't know. New York? Personally, I've never been sure dragging your children across the country with a handcart is the best plan.) I hope she did see Jesus (but if so, which version?), but one more near stranger's near death experience probably isn't the cure for me. Also, I wanted to ask about brain science, to ask if maybe getting hit on the head had caused her brain to fire off some chemicals that made her think she'd seen Jesus. Instead, I nodded my head and wondered if maybe I should look into a more traditional therapist. But there you have it, folks, never fear. My therapist saw Jesus. So it's all good.

Ain't it Great?

There's this song my mom used to sing that often runs through my head, "Boom, Boom! Ain't it great to be crazy? Boom, boom! Ain't it great to be nuts?" Turns out, not so much. When I was a kid, I imagined insanity as sort of throwing aside all of the acceptable behavior and doing whatever the heck you want. Seemed almost like the ultimate freedom. But my experience is that the opposite is true. Crazy is like living in a box that just keeps getting smaller. Sometimes it feels suffocating or like I'm treading water, trying not to drown. Or maybe I just got the wrong kind of crazy. It's a strange thing, having your whole world view take a dramatic shift. And not in a good way. I can't tell you how much I miss me and the way I used to live. It's the freedom that I miss. It's the looking at the world without thinking about all the germs. It's the not having to spend hours of my day disinfecting things. It's the not feeling like I need to monitor everyone and everything that comes into my home. It's like "germ" is always shoving aside everything else in my head. If you find yourself looking for a phobia, don't choose germs. They're everywhere, you can't see them, and they're on people. And you like people, right? No, go for a phobia of elevators or something that doesn't inhibit and bleed into everything all the time because it's everywhere. But, heck, maybe the elevatorphobes feel differently. My 2nd therapist was mentioning some kind of exposure therapy she used on a snake-o-phobe (herpetophobe, if you want to be fancy), and I expressed the opinion that it would be so much easier to be afraid of snakes than germs. She said, "Tell that to the snake people." So I don't know, any elevatorphobes out there, feel free to dispute me, but can't you just take the stairs? I mean, for me, it's sixes. There are the buttons on the elevator and the the dreaded handrails on the stairs. Boom, boom.