Monday, April 28, 2008
Sunday, April 27, 2008
I want to call up the autism boss and say, I Have Had It. We are done with this whole mess.
Really, I want to FIRE autism. Autism? You hear me? You are out of here.
The thing is, I don't think we're even getting autism right. I have bought a trillion books and joined fifty dozen web sites and our ism is the sore thumb. Don't read this that I'm saying there is no ism here; surely, beyond any doubt, things here ain't as they should be. BUT. I am so confused and tired and SO TIRED OF BEING TIRED and confused that it stymies me.
As soon as I got a little used to the improvement (it took getting used to because it meant that the painful diet and other measures were working and needed to become a way of life) and the good news from school, now of course it's all negative.
I can't even call it regression, really. We don't do anything as clear and obvious as that. The rooster's language continues to be more clear and focused. He rarely says much that resembles a script, he's using less jargon, and he isn't perseverating around me at all. His sentence structures are more complex and he can use more abstractions. He initiates friendly conversations with people he knows and strangers.
The one thing I have to say that is clearly wrong with the rooster is this: He cannot regulate his behavior. His behavior is utterly noncompliant. He is only happy and getting along with others when the agenda is wholly under his control.
And I want to fire whatever it is that causes that. I want to evict it. I want to give it a piece of my pissed off mind.
The rooster has a great heart. You just have to get beyond a mile of bullshit to see it.
The rooster gets upset if I am hurt. He hugs me tightly and kisses me sweetly and tells me how much he loves me. He makes sure his sister always gets a turn at anything good, unless it means he has to wait or give anything up himself. He says thank you and please almost all the time. He delights in showing me cool things. He beams with pride when he does something well, like dressing himself today. The rooster loves to say hello to people and ask them to play. These are good things in my little boy, almost four.
But. Holy cow. Holy cow, holy cow. A weekend is a tough sentence. I mean to tell you. NON COMPLIANT. He is the King of NONCOMPLIANT. The poster child. We could make a video. We could knock the Super Nanny on her butt. Our days are wall to wall struggle.
And I have no idea how to tackle it. I STILL have no idea which approach or method or treatment or therapist or book or what will help, or how to decide, or where to begin. We will get a classroom shadow in the next few weeks, and that might help, I have no idea. Reading about it until my eyes fall out has enlightened me exactly NONE. We only can tell you what doesn't work, and the list is long, filled with things everyone else seems to find effective but us. The rooster is one of a kind and has an iron will, a bad attitude, and too much power. He is seething mad but does not know why, and he's ready to fight more than 99 percent of the time.
I freak out over how much time has passed without any interventions, but then when I realize the strides he has made on his own that makes me pause, too. If he'd had help over this time, isn't it just possible that he would have made exactly the same progress, all of which we would erroneously chalk up to the ists? It's just a question with no answer that runs often through my mind; of course I know we still plan to get him all the ists we can get him. We're on every waiting list and have calls out all around town.
This is an endless job among endless jobs, lost in a maze, buried in a conundrum, dark and murky, and there are times I just don't want to work this hard. Doesn't sound like me -- I LOVE to work hard -- but I'm about to fall over.
And yes, we even got a baby sitter this weekend, so all of you who tell me to take a break can be assured I try to, but I need more than a break, and even at getting a break I'm doing the best I can. Or at least I'm doing the most I can. I don't know if that's the same or not.
Rambling isn't pretty, but neither am I.
Thank you for reading my drivel. I would say you might not see me for a while, because I want so badly to turn my back on autism entirely, but you'd know that would last 10 seconds. Rooster Calls is about all I have by way of community in my life. The beautiful people who read it, lurkers or not, are the sustenance that forms my life support.
I'll be here. I'll be working. I'll be venting. It's all I can do, until I can't do any more.
Saturday, April 26, 2008
Now, I know I probably have a rep as a whiner by now. But I'm going to risk making it worse. I swear this is true: tens of thousands of people of all ages, backgrounds, and developmental differences are walking, riding, being carried, and only two people -- two, out of tens of thousands -- seemed unable to handle it, for whatever reason. I looked in ever stroller, bouncer, tent, nook and cranny I could find to see if I could spy a single other meltdown in progress over the course of about two hours. Only my children needed to cry and scream and flail about on the lovely and meaningful walk on a beautiful day to fight against autism.
But my inlaws joined "The Rooster Team" for the walk, making it the four of us against the two of them, and so we did manage to make it to the finish line. Not a minute too soon, but we made it.
Yes, I know: a parable for sure. We need all the extra hands we can get on Team Rooster to make it to water finish lines exist in the long walk against autism.
Friday, April 25, 2008
I grew up in a family that had plenty of material for secrets, but I didn't choose to keep them. I put things out there as soon as they happened: My dad left. He was crazy. He ran off with all our money, plus a lot of other people's money. My mom dates bad guys. Want to come over and play? I was ten when I started having the fodder for secrets and choosing instead to tell my own stories first and loudest.
I am not an exhibitionist, it's just that I don't prefer people whispering behind my back.
The rooster gets talked about. I don't think he cares, and it's not what is important, but I do prefer when I'm the one talking about him, first and loudest. I tell his truths, good and bad, not to expose him, but to help him, and to protect him. Saying that my son has autism does not hurt him, because it is his truth, and you know what the they say about the truth setting you free -- I believe in that. If that is what people are talking about, I guess I'm fine with that. The rooster gets whispered about sometimes anyway.
The rooster is not a bad boy. Anyone who says so better whisper, very quietly, so quietly that I can't hear them, or they better run. I hope I said that loud enough.
Thursday, April 24, 2008
5 things found in your bag:
To Do Lists (half done), Thank You notes (half done), cell phone, loose change, thumb drive
5 favorite things in your room: empty space, reading chair, photos, books, Hockney print
5 things you have always wanted to do: sleep, get hypnotized, lose weight, write a book, sleep more
5 things you are currently into:Blogging, web 2.0 tools, research, comfortable shoes, my family
5 people you’d like to tag:Hmmmm... I'd like to tag Redhead Momma, Good Fountain, MOM-NOS, Christine at Day Sixty-Seven, and Jordan, but I feel shy about tagging people, as it's my first time, and I have no idea if anyone is still reading this blog -- I wouldn't blame you for not wanting to read anyone with the gall to post three times in one day!
For one thing, my hair is huge, and I doubt anyone spends much time noticing the white sprouts amid the gigantic auburn explosion all over my head. (Let's just say I fit in perfectly for a brief moment in the 80s in the South.) For another, I don't much care about how I look, as evidenced by the lack of makeup, haircuts, showers, and decent wardrobe. Surely I have bigger battles and more important things to do. Why on earth do I have this vain and pointless habit? The big irony: I squint when I pluck out those hairs, and the squinting is giving me some obvious wrinkles between my eyes. HAH - now that is going to make me vain and self-conscious. And you can't pluck a wrinkle.
Okay, so you realize that my bad metaphor du jour is coming next, so I hope you're going to duck.
My rooster has his own set of gray hairs of a sort, and I don't know why I pick at them sometimes. They aren't important enough to fret over. Yet I do. But if I don't stop I realize I'm could leave some lasting marks.
Does it really matter right now in the context of everything else going on if the rooster gets potty-trained right now, or if his hair grows as long as the girls? Do I really need to force him to sit when he watches Sesame Street if he really wants to stand? Does it make any difference to the big picture if he insists on pushing all the buttons on the elevator? Or does it matter that we all get a little respite now and then from the struggles? Shouldn't I prioritize, and let go of the small stuff?
I'm planning right now to spend more of my stuck-in-traffic time looking at the kids in the rearview mirror and less time giving myself wrinkles unnecessarily.
Wednesday, April 23, 2008
Even though the classroom has a one-way viewing window, I don't hover much. I pass that window on my way to do legitimate stuff, and I don't always stop to look for the rooster inside. Of course I do sometimes. But usually I know what I will see -- 21 kids behaving, one rooster bouncing around like the pinball in the machine that just got a good flick. I'm not too masochistic - I rarely like to watch myself bleed.
When I see the teachers in the hall or lunch room, though, I often feel compelled to ask, "How is the day?"
Almost always, the answer is "bumpy." I can't tell you how many times I've considered the kindness of this word. It's so much more generous and descriptive than the word I use when people ask me how my days are with the kids. "Awful." "Impossible." "Long."
Today was bumpier, I think, because daddy drove the kids in, which usually never happens, but I had a breakfast meeting and needed to leave the house around 6:20 a.m. This, of course, played through my guilty-mother-mind when I'd crossed paths with a teacher by 10 and found out about his bumpy morning. But with bumpy, there are ups and downs, and the word itself has a playful, innocuous sound, and so, knowing that my only other choice meant worry and self-flagellation over something I could not have changed or done differently, I decided to let it go, and tell myself tomorrow would be another day.
After school, the daycare teacher we all adore let me know that the rooster is nearly out of his beloved snack -- grapes -- and we all know that could spell disaster for tomorrow. So, on the way home from the endless day, I took the kids with me to a health food store to buy more. The store is tiny, with carts to match, and both kids begged to sit in one of the single-seater mini carts -- a physical impossibility for me while navigating seven or eight tiny aisles alone. I encouraged, begged, tricked, urged, and prodded the rooster to walk, and I grabbed grapes and some gfcf snacks as quickly as I could, at last plopping him briefly in a cart at the end as we stood and contemplated the health food store's version of the impulse buy rack near the registers. From there, we encountered a darling 7-year-old who wanted to chat despite the rooster's failure to live up to her conversational expectations, a bizarre and surly customer who clearly resented our existence, and a cashier who left mid checkout for more than five minutes without so much as a word to us in order to take a phone call.
I thought about writing about our grocery store trip tonight, and I felt tempted to describe it as a long and awful trip for grapes, but why put anyone reading this through that? Really, we just had a bumpy time at the grocery store.
What I need is some good shock absorbers.
Monday, April 21, 2008
He calls me about five minutes before I expect him home. I press the cell phone to one ear and plug the other ear, shouting, "Hello?" over the shrill screams of Peaches and the rooster. We are outside and they are pretending something I am too old to decipher.
"How are you doing?" he asks. In one beat, I step in between the kids, intercepting a fight over a marker, and glare at them, swipe at my new pants that are covered in sidewalk chalk hand prints, and push the unwashed and uncut mass of hair out of my face. "Alive. You?" He is fine, but left work a little late, and will be later still because of all the cop cars and trucks in his way -- a gang bust near his work. "See you later," he tells me, "I love you."
He walks in the house as I am feeding the kids dinner, opening the bills, and packing tomorrow's lunch boxes. I have some of Peaches' food on my shirt now, and she is trying to feed me unwanted bites of her dinner. As soon as my husband crosses the threshold, I tell him about the frustrations of my day, and the problem with our phone bill. He has no time for feeding himself before I give him my wish list of help requests, which includes diaper changes. When he calls the phone company to deal with the problem I mentioned, I make an annoyed comment about not waiting until the kids are asleep to do that. Can't it wait? The whole time I'm still telling him the story of my day. This is when he confirms his insanity. He looks at me completely straight-faced, and at first I think I mishear him over the din. "You look beautiful," he says. Seeing confusion alongside the wrinkles, spots, and general dirt on my face, he says, "I heard you laugh. It's so good to hear you laugh."
I married a crazy man. Thank goodness.
Sunday, April 20, 2008
It begins with a typical morning here, actually even a better one, but for us good is still bad and easy is still hard, and our "normal" with Rooster, 3, and Peaches, 2, is like a bad day of Jon and Kate Plus Eight with two 6-year-olds and six 2-year-olds.
5:30 Peaches screams, "MOOMMMMMMY!" I leap from bed in fear she has the stomach flu from which I am 90 percent recovered and which has kept my husband up all night. Nope. She just wants to start her request list. "Pancake." she demands. We are out. "WAFFLE!" she yells. I make her one. She shreds it up and flings it on the floor. "I don't like that. I want PANCAKES." Yes, I have rules and discipline, but my husband needs some quiet in his post-agony and the rooster is still snoring his miserable, adenoid thick snore. I serve Peaches conciliatory snacks and let her accompany me to the one clean bathroom. God forbid I pee alone. She actually climbs on my legs in the process.
6:00 The rooster is awake, demanding TV and pancakes. Hugs? Denied. "Not today," he tells me.
6:10 The week of stomach flu means no shopping, and the rooster has very few gfcf foods in stock, so I allow him what gfcf food we have on hand, ginger snaps, while I go find clean diapers and clothes for both kids.
6:12 My arms full of diaper supplies, I find the rooster crumbling ginger snaps alllllllll ooooooovvvver the floor. He looks at me and screams. "PANCAKES, PULLLLEEEEAAAAAAAAZE. I made a cookie floor, see?"
6:15 I am wrestling the rooster into a diaper, size 7, almost too small, as he constantly tries to walk away, while Peaches whines her mantra. The mantra. The whinemantra. "Pickmeupmommy, pickmeup, pickmeup, pikmiup, pimeeeupppp, UPPPPP, UPPPP, WHAAAA," (repeat).
6:20 I am wrestling the Peaches into her diaper while the rooster runs around the room. "I. WANT. PANCAKES." (GFCF pancakes we cook at home, in an expensive and laborious process, so that we can freeze them. Bisquick they ain't.)
6:30 Trying to teach the children how to clean up their own messes, we sweep up expensive gfcf ginger crumbs from the floor together (tedious process complicated by reminders not to hit, spit, scream, push or kick).
7:00 A deal is brokered: I will take you to the store to buy the greatly coveted STRAWBERRIES if you will brush your teeth, put on your shoes and behave.
7:30 Teeth brushing accomplished, but I am sweating, both their shirts are wet, and we have no more clean bathrooms. Mental notes: buy new toothbrushes, hire toothbrushing therapist, get nanny, win lottery.
7:35 He has one shoe on, she is crying, they are arguing.
7:36 He has no shoes on, they are fighting.
7:38 She has on both shoes and is repeating the mantra by the door.
7:38:30 They each have on one shoe. He is screaming, "STRAWBERRIES, NOW! AARRARAAAGGGG!"
7:45 I load the angels into my filthy, condemnable car. My teeth are not brushed, my clothes are not clean or well fitting (shirt too tight, pants too big), I am not wearing my glasses. Oh well, I can see passably well out of one of my eyes, and those scratched up crooked glasses are at least a year past their prescription, so no big deal.
7:46 Backseat screams remind me I have not turned on the favorite book on tape of the week (Beezus and Ramona). I push it in for the trillionth time and we all chime it as it is now memorized. Mental note: Scour ebay for new books on audiocassette. (No cd player in my 12-year-old basic model much-puked-in Saturn.)
7:48 I turn around and state my terms: Good behavior at the store equals ALL THE FRUIT YOU WANT, and maybe a toy, too. Bad behavior? Zero fruit, zero treats, straight home, no fun, time out. I can tell by their expressions that for once they hear me, they are hungry, and my terms are accepted.
7:56 We pull in not to the close grocery store, but the store where I know they have carts designed like trucks for two small drivers. We load up on fruits, snapea crisps, baby wipes, and Color Wonder marker sets. I cast longing glances at the dairy products and the alcohol aisle. It's early and not crowded this Sunday morning and so no one visibly minds my banshee truck drivers in the aisles.
8:06 Near the finish line, the rooster reverts to his ranting NO diatribe, so we try my new technique, a song I wrote during the previous day's MELT DOWN that actually works so far with the boy, a lovely duet that goes like this:
Me: When I say no, you say
Me: When I say no, you say
Me: No, oh, oh
R: Yes, es, es
Me: No, no, no
R: yes, yes, yes
Sue me, but I get a twisted pleasure out of tricking him into so many yeses.
8:45 We arrive home, unload our booty in the backyard, and eat and play. We are all perfectly content for NINE WHOLE MINUTES. Manna, jewels from heaven.
Before 9 a.m. I am completely spent. I have made no major accomplishments, come nowhere near the urgent to do list on the breakfast bar, and the Sunday blues are looming large. I have been up for 3 1/2 hours and already I'm counting down to "bed time." It's a long count... 11 hours to go.
And then it hits me... the truth that calls out my bitterness. This, I realize, is one of our better days. I look inward and search for my sense of gratitude, and I come up empty. I think of those less fortunate... and can't seem to learn from that, either, I am ashamed (but honest) to say.
I need to blog.
Stick a fork in me; I'm done.
Saturday, April 19, 2008
I imagine my mom probably gushes about my kids to the rest of the family too, but Little B, her first grandchild, definitely hung the moon over my mom's house, and I get a full report on everything he ate, said, did, and played with, from every visit or phone call she's ever had with him. I am not complaining! I like this. It's cute. Her grandmotherly pride makes me smile. It has served to help me better appreciate my mother's maternalism, as I can assure you she did not behave this way over her own kids. I also don't think there is any favoritism about it. My mom adores the rooster and Peaches, too. They aren't as old as Little B, and they live far from her, so they don't give her as many bragging rights yet, but she dotes lovingly on all of her small brood.
I don't see much of Little B, though I love him and love getting the updates. My brother (his dad) and I don't speak, for a trillion great reasons, and his family lives on the opposite side of the country from mine.
So my mother calls me the other day to let me know she revealed the rooster's diagnosis to Little B's mom. And I bet you guessed what... for my mom, it was an enormous shock that Little B might turn out to have some form of a diagnosis of his own. Of course, his history is not just like the rooster's, but he hasn't sailed through his development on the crystal blue waters my mom had imagined.
Hmmmmm. I was thoroughly unsurprised, on some level, along with my mixed emotions.
First, I am sad about it. I love my nephew, whether or not we have turkey dinners together, and I always will. I wish him all smooth sailing through childhood, and to know that he has had struggles akin to our own depresses me. It isn't right that so many kids face such great challenges. Childhood in today's times is just a wreck of a thing, isn't it?
But also, no matter the diagnosis or label or whatever, Little B is a smart and funny kid with hobbies and passions who wins trophies in martial arts and stuff. So, if Little B can do it, that is another hopeful reminder to me that in another five years or so, maybe the rooster will be in calmer waters as well.
And then there is the whole genetic thing again. I'll repeat my mantra -- I have no way of knowing why the rooster is who/how he is, but he's always been roostery. And Little B? I think he's always been Little B. And they are bound by blood...
For my mom, old school in so many ways, it was kind of an aha; "I told you that the world has gone crazy trying to find every little thing wrong with everybody -- you watch, they'll grow up to be Einsteins." Mom has lent one hundred percent -- no, even more than that -- of her support to us, but you can tell on some level she thinks of autism as some kind of New Age Hocus Pokus Gobbledygook.
Then there is the question in my mind about the "secrecy" about Little B. Was it secrecy? If so, why? And how do I feel about that? And how does the rest of my family feel with me being so "out there" about the rooster? And how will the rooster feel about it? About this blog?
These are all just questions, no answers in the bunch. So what else is new?
All I know is that Little B and the rooster might someday share a ticket, and that my mom will be more than happy to do their press.
Friday, April 18, 2008
Instead, I'm thinking about work, which I went back to today. It's bringing up some metaphors for me...
I have an interesting job, one that I love, one at which I work quite hard, one that I helped design. I think people appreciate the work I do, because they get the sense that I help students and teachers learn, and that I care, but I am fairly certain that not many people really know what exactly it is that I do. My title helps very little. On a regular basis I find myself fantasizing about making a little video or business card or poem or who knows what, but something that gives a satisfying answer when people say, "So what do you do at the school?"
How much does all this sound like being a MOM? Imagine trying to define the word MOM. Or write the job description. Now imagine the same for a special needs mom. Yowza.
So, I went back to work today, after being out for two days. Some people didn't even know I had been gone. Why not? Because those people have offices on the same hall as mine, but they don't work in classrooms, and I do, and that is where they rightfully assume I usually am when I'm not around. My desk is not where the bulk, or the substance, of my work is done -- it's done at other people's desks, and usually short people's -- desks with stickers and lollipop lettering.
Other people had become acutely aware of my absence, leaving me emails, voice mails, little notes in my mail box. Most of the things they wanted my help with they can probably do on their own, they often just don't believe that they can. I am working on building their confidence, though I realize that might challenge my job security!
See? More similarities.
(I also had very sweet inquiries about how I was feeling, and many kind get well wishes, and those helped me so much.)
So, maybe when people ask me at work what it is, exactly, that I do, it will help them if I say something like this... "I work with technology, but I'm not a computer teacher. Instead I use technology like a teacher-slash-mother, to help in any way that helps people learn and grow."
Nah, that sounds lame. But cut me some slack. I did just get over the stomach flu of the century. Not that I want to talk about THAT.
Wednesday, April 16, 2008
Still pondering this, I found myself laughing at so many things he said today, a mental list began to form so I could share with everyone. Among the quotables today... (these are also not all for the feint of heart or light of stomach, so read at your own risk)...
Me: Are you going to throw up, Roo?
R: No, I already threw up. I threw up in your CAR!
Me: What's wrong, Rooster?
R: There's poopy in this tub! I want to get out!
Me: Did you accidentally make a poop in the tub?
R: I don't know. There IS poopy in the tub! Get me out! Yuck!
Me: Do you need to throw up, Rooster?
R: No, mommy, I am all done throwupping. Not today, okay?
Me: Roo, do you need to take another bath?
R: No, mommy, I don't want to take a bath. There is poopy in the tub!
R: Mommy, your hair is beautiful!
Me: Thank you, Rooster!
R: Here, let me put a wipe in it!
Me: No! Rooster, don't put the baby wipe in mommy's hair.
(He does it anyway. At least the wipe is unused and clean save for pink finger prints --- he'd been drawing with pink earlier.)
R: Now you are a Queen!
Me: Rooster, why did you pull open that roll of film?
(Editor's Note: Visualizing the unspooled film is important here. It's stretched out like a Slinky.)
R: That's not film, mommy. It's a tornado. It's going to knock down my tower!
So ta da, I put my finger on the subtle difference. It's the volleying. My turn, your turn, my turn again. Sometimes we each get as much as a half dozen turns before the ball bounces away, out of reach... I've waited almost four years for this. The rooster and I are having actual conversations.
So, for those of you valiant readers taking this journey with me, instead of telling you how NOT to reply, as I sometimes do ("don't reassure me"), I encourage you to tell me exactly where I went wrong this time ("Will you ever learn to stop tempting fate?").
a. the clothes?
b. the paper towels?
c. the husband's fault?
d. all of the above?
e. none of the above?
Today, Wednesday morning, the sun rose bright and cheerfully on our corner of urban landscape. I, tired of dressing like TLC's What Not to Wear's next best candidate, decided to put on pants NOT made out of denim, and a top you could get away with calling a blouse, just to see the look on the faces of my astonished colleagues. For Rooster, I got out the cute outfit his grandma just sent him for his birthday. The Peaches? A DRESS. Why not look nice on such a lovely day?
Uh, huh, I hear some of you voting already.
I packed us all up for our day -- 3 lunch boxes, bills to mail, books for the car, work stuff... then, I thought, I should put more tissues and paper towels in the car because you never know when we'll need them.
More voters shake their heads with the certain knowledge of how I brought this all on myself... I can hear it from here.
We piled in the car remarkably ON TIME , and the daddy gave everyone kisses. He looked through my open window at me and said, "The rooster had a good morning, didn't he?"
The final blow.
We made it exactly halfway to school.
It's 9:30, and let me cut to the chase. I have vomit in my car, poop in my bath tub, and two kids screaming for popsicles. The boy caused all the messes, but must feel at least a little better now, as he is endlessly jumping up and down screaming, "Octopus!" as he watches, "Go Diego, Go!" The girl, not the "sick" one (yet), is suddenly sneezing so much and so hard that her hair is stuck to her face. With these symptoms, she has gone from way too clingy for her age to way too clingy for a kid half her age, and has only left my hip long enough to devour the popsicle I finally gave her.
Suffice it to say, the lunches are back in the fridge -- we're expecting a day of Pedialyte and popsicles. We're all in our sweatpants, and I'm rolling up the sleeves of my tshirt. I've got some disinfecting to do.
Sunday, April 13, 2008
Do they make size 8 diapers?
Weekends feel like obstacle courses built out of bramble, quicksand, wishes, kisses, deep sighs, and, this weekend in particular, poop.
Weekends feel like a test of my mettle.
Weekends feel like those old fashioned grocery store game shows when you had to fill your cart up with so much stuff you could barely push it and cross the finish line before the buzzer went off or you lost everything you worked so hard to get, which wasn't even such an amazing prize to begin with, but you wanted it nonetheless.
Weekends feel like a tease, the way Peaches calls sweetly to doggies to come over, and then when they get close she freaks out and screams, "No, Doggie, NO!"
Weekends sometimes feel like Christmas the year after you found out the truth about Santa Claus.
Weekends sometimes feel like an Ashton Kutcher special, and I've been punked.
Weekends feel like the second shift, the other day job.
Weekends feel like fresh air, but fresh air that sometimes turns in to a whirlwind.
Weekends feel like home ec on steroids.
Weekends feel like work, but work also feels like work.
To be honest, it was a pretty good weekend. As far as weekends go, anyway.
Wednesday, April 9, 2008
I guess I should start by saying that my ability to write about the rooster at all surprises me, as well -- a lifelong dabbler at writing, I've never felt comfortable writing anything like first person, memoirish stuff. (As a journalism major, every time I ended up having to write the house editorial for my college paper, I tried to get out of it. I could write 3 play reviews, a news article, and a profile in the time it took me to scratch out a short editorial.) It's this strange new contradiction of an almost out-of-body variety that allows me to do this right now -- I feel constantly on the brink of embarrassment and shame as I write posts for this blog, but at the same time, my fingers usually seem to write faster than I even know what they are up to, and when I realize that I've clicked "Publish Post," I always feel shocked, but better that I did before I started writing.
But I'm often surprised but what I've written, as well as what I haven't written, and when I read my own stuff I find myself wondering why don't I write more about the other things going on in our family. Sure, I know this my Rooster blog, but we're all interconnected; even as I wrote about the others it would still relate to the rooster.
So: I idolize my grandma. She is sick.
See? Was the above a work of impressive blogging? This one is not writing itself. I'm facing long pauses here -- my fingers are not flying. I'm forcing this blog out. I had to slave for seven words, two simple sentences. But I have decided that maybe if I can eke out something, maybe it will help me, the way it helps to blog about the rooster.
Okay, so I think what I'm trying to say, or trying not to say, or something, is that, for as long as I've been writing about my rooster's struggles, and my struggles with his struggles, my grandma has also been suffering with her own. I feel my concern for my grandma as acutely as I feel my concern for my child, but one gets a blog and one finds me nearly silent.
My grandparents are the heroes in my life, heroes who treated me like their own child, saved me from all manner of evil, and remained youthful well into their old age. My grandpa passed away a few years ago, and that was very hard, and then my grandma began to age, and that was very hard. But my grandma was still strong enough about four years ago to fly 3,000 miles to be with me when the rooster was born. She and my mom both came, were with me when I went into labor, stayed in the hospital during my 32 hours of labor. My grandma, 80ish, breast cancer survivor, diabetic, flesh-eating bacteria survivor, spent the entire night in the waiting room, then made it through an entire day of waiting, until at last she saw her great grandchild born, the first time she ever watched a birth like that. Then she and mom went out to the deli across the street and brought me back more food than I could ever imagine eating... so like my grandma to feed me well. She said what she has said so often in my life when I needed it, "I'm so proud of you I could bust."
But my grandma has been in and out of the hospital and a rehabilitation center for some heart problems and other ailments while I've been writing these blogs, and where am I? Not in the waiting room. And I feel terrible. I feel like I'm letting her down this time. Sometimes if feels like being pulled apart on a rack.
I might not have written much about her, but I have thought about my grandma every single day. I think about her, and I think about my mom and stepdad who take care of her, every single day. When I get really scared, I call my dear friend C who I've loved since fifth grade, now a doctor in our home town, and she talks me through it, and stops in to see my grandma in my stead, and helps her more than I ever could, and then calls me back or emails whatever reassurance she can. I call my mom at least once a day for the updates, and to offer my support. If my mom - or C - ever tells me, "Come now," I'm ready to go. But is that enough?
Sure, of course, I absolutely know that my grandma probably wants me here, taking care of Peaches and Rooster. I can hear her in my mind telling me that I'm needed here. I know there isn't a lot I can do to help my grandma right now. I know that she might even improve, and that there might be a better time coming for a visit, and time when we might be able to say I love you eye to eye. I know that my grandma knows that I love her very much, that I adore her. But I feel as though I'm failing her right now. And I feel like if I go to her, I'll be failing my husband and children.
Honestly, if my husband left me alone with the kids so he could travel, even for an important reason, I worry I'd end up needing to call 911. We haven't gotten far enough out of our rough patch, and we survive days by the skin of our teeth, nights by even less. So how do I go? And how do I not?
Let alone the toll of it. Travel to my hometown to see grandma 3,000 miles from here involves at least two flights, at least an hour layover, and at least a 70 mile drive across the state line an through rural back roads after that, totalling about 10 hours of travel time barring anything unforeseen. It doesn't lend itself well to children, certainly not MY children, so I can't imagine taking the with me for this kind of journey. The rooster gets so sick each time we travel that last time we went to see grandma he had blood trickling out of his eye by the time we made it all the way there, and we were lucky to know a doctor who could treat him asap, unlocking his practice at night to get us what we needed. (Of much less consequence, I have used all my work time off for family medical purposes, and I continue taking unpaid time off for a slew of appointments that leave my calendar looking bloodied with red highlights.)
Is this excuse making?
Is it even right to put all this out there, knowing someone will reasure me? Please, no one reassure me. Please don't.
Grandma, I am coming soon. I just don't know exactly when, but I love you, and I'm so sorry I'm not there yet. My heart is. It's in two places at once, but it's still full of love.
Sunday, April 6, 2008
Circumstances helped, but I also gave myself permission to read a little fiction, ignore some of the less pressing chores, and worry a little bit less. I feel okay. Not too awful bad, as a girl I knew in high school used to say. Looking at the wreck of my house and the longer to do list on the chalk board, I guess I might pay for it all during the week ahead. But for once I don't end a dreaded weekend by beginning a dreaded week. The weekend was okay.
Lately, that's saying something.
Saturday, April 5, 2008
When Jenny McCarthy went on the talk show circuit saying she cured her child of autism with this special diet, my most judgmental inner voice blurted out, "Great, another B-List Celebrity hawks a diet plan, and this time kids are the victims. She ought to be ashamed. What is wrong with people? Her poor kid. What a load of garbage." That was ugly talk, and as tempted as I am, I will not blame my upbringing on my wicked tongue. I am judgmental and it's the thing I am working on hardest about myself.
Now, that is not to say I'm writing tonight to take a stance, get political, persuade you the joys of the gfcf diet, or start a Jenny McCarthy fan club (I'm not only not a fan, I'm not sure I've ever seen anything she did). NOPE. I am writing tonight, for one thing, to say, in as low-jinxy of a way as I can, that today was not awful, because those of you rooting for us (and holding us up with your strength and love) deserve to know that, and I am giving a bit of credit to diet.
I have still not read Jenny McCarthy's books or even heard her spiel, more than a minute-long recap on the radio, so I'm not saying that we follow whatever it is she advocates, because I don't know thing one about her story. I also know that plenty of people have tried all kinds of diets as a means to help their children, and it didn't work. Diet clearly is not a one-size-fits-all sure-fire miracle. What I am saying is that I do know I am certainly learning -- in a way I never imagined -- how powerful diet can be to the human brain. (Are you thinking, "No duh?" I don't know why I never got it before, but I never got it before.)
Now, we've made many changes in the last couple months, because we'd reached an unsustainable level of misery and we needed to throw the kitchen sink at it to get some peace. A gfcf diet (also no soy and very little sugar) is just one thing among many we've tried, so I can't say for sure how much to credit it with the rooster's better days. I don't know if diet played a part to somehow help rooster share his toys with his sister today, or kept him from tantruming on the long car ride (to pick up some gfcf supplies), or helped him blend in (when does that happen?!) at two birthday parties in a row, or inspired him to walk up to his daddy unprompted and say, "I'm crazy about you, Daddy!" Maybe his pragmatics and reciprocity issues seem better lately for a host of other complex reasons.
do know this, though. My rooster's first cold happened when he was three months old. Every entry in my thorough journals indicates it's still with us, more than three and a half years later. But without a doubt in my mind, today he is the least sick he's looked in all that time. Furthermore, without giving you TMI, our rooster is still in diapers, and the contents of those diapers have NEVER seemed healthy. Until this weekend. He looked better, he felt better, he digested better, than he ever has, and today was not awful, not even a little awful. We've been religious about the diet for several weeks now, and my gut tells me it is paying off.
I can barely forgive myself for not trying this diet sooner. I was hugely ignorant about food. Even if you might find it understandable that I rolled my eyes at Jenny McCarthy before I knew better, I should have heard what Barbara Kingsolver was saying. I am a huge fan of Kingsolver's fiction, but I also read her memoir about eating locally. She made a point I think of often lately. She marveled that people who might not think twice about expensive travel or clothes don't want to spend extra on food in order to eat what is best for them. She said something like this: food is one of the three essential things that humans need in order to STAY ALIVE. Given that NO DUH fact, you would think that people would be willing to put effort and money toward eating right.
Well, hey, I will be the first to say that I personally have all kinds of issues with eating, issues that go way back, issues that come from all corners and could support another whole blog, but I thought I was doing much better for my kids. Both of them have always been provided very "healthy" diets. I always thought I was providing better for them than for myself in that way. I just had no idea that for some kids on the spectrum, kids like my rooster, "healthy" is more complicated. Once again, I learn that he has special needs, but that we can find ways to meet them if we try really hard.
So, anyways, I hope you heard this one thing amid all the other stuff I rambled about in this post: Today? Not awful. Really that's what I'm trying to say. Thanks again, everybody. (I'm going to drop and cover now.)
Friday, April 4, 2008
Are you surprised to hear me fly in the face of the deities I so profess?
I might be hopelessly superstitious, but I'm not going to let that stop me from saying
it's worth the risk to say
I am full of gratitude to everyone for immersing my family in kind words, deeds, gifts, love, help, prayers, cards... whatever you sent, however you sent it, today felt like a miracle.
I'm putting on my bullet proof pajamas and calling it a night, weary to the marrow, but not from the tough stuff today; today, I wept with joy... I felt the encouragement of people I have never met before, and I felt care coming for my rooster from far away places he's not yet seen.
You can't measure our thanks. It is boundless.
Thursday, April 3, 2008
When I met my husband, falling happened quickly, but I told him early on I needed to call the whole thing off asap if he didn't want a family. I knew with conviction that I wanted marriage, children. Without idealizing or fantasizing overmuch, I knew if I didn't at least try to have a family, I'd never feel content. I didn't assume that family would make me content, just that the absence of family would cause me regret. I don't do regret well.
The family of my childhood didn't have "happy" in its vocabulary, and I served as peacemaker, problem solver, stability manager for two adults and an older brother from the time I hit preschool until our family crumbled around the time I hit double digits. Then I took over managing my mother's upbringing as she brought home a series of alcoholic boyfriends in a period I think of as the advanced juvenile delinquency of her mid thirties (my current age). With no such thing as blogs yet invented, I wrote in my elementary school diary how I would never raise kids the way my parents did. I ached to live in a home you could walk through without pointing at the broken things and describing them like this: "this is where the chair missed my head but scraped the woodwork, this is from the coffee cup that she threw at him..." So this is why I say I had no grand or naive Brady Bunch illusions about First Comes Love...
I figured life would be hard, marriage would be hard, money would be hard, kids would be hard. I thought I'd been well acquainted with hard and spoke the language well enough to get by. I figured health would be hard, too. But the thing is, I've always liked working hard. I've always felt proud of rolling up my sleeves and using hard work to overcome the struggles, to come out on the other side. I've always been able to fight and work my way toward peace and tranquility, if that makes any sense.
Maybe this is where the naivete comes in though: I think I thought working my ass off, armed with love, I could mother, and that would be enough. That I'd teach my kids to work hard, too, to feel the enoughness, the satisfaction, that comes from working hard, and they would feel proud and happy too, no matter how we might all struggle. It's a "you-and-me-against-the-world" camraderie I've always yearned for in my relationships; I love to be on a team, a mushy team with credos and ideals and common goals, even when we come in last place. I love the process, the journey, the always being prepared, together. I would have signed up for Brownies or Scouts, but my mother said they made her puke.
I guess when I started my own family I made the same mistake so many parents make, assuming I'd have Mini Mes, kids who would similarly enjoy the process to struggle, conquer, overcome, revel in that success... I never stopped to consider that my kids would have anything in common with my own parents. I don't know why not -- I certainly always identified with my own grandparents, who often took over the parenting roles my mother and father didn't play.
It feels like a cruel twist of fate sometimes when I do battle against my kids to give them what they need, and when I have no other choice but to fight against them for their own sakes. I long for them to be on my team, but we certainly don't have any rah-rah team spirit yet around our house. I think rooster would have the same puke reaction to Scouts as my mom (the mom of the olden days; un the end, my mom grew up quite nicely, around the time I graduated college. Today she could practically be a Scout Leader. Who knew?)
Never ever for a single solitary instance do I regret having babies, these babies. They are hard, one clearly much harder than the other, but I love them in equal measures with every breath I breathe. The love is the biggest thing in our house, no matter how much hurt comes too. The love comes from all four of us, just in different ways.But it sure isn't how I pictured. I guess I wanted to give my babies the childhood I did not have, and that maybe I selfishly hoped I could taste a slice of what I missed on my first go-round. I knew I would not put my children through the worst apsects of my own upbringing: hostility, rage, inconsistency, desperation, greed, yelling, screaming. It never occured to me that no matter what parenting I might do, that these things might find our way into our family by way of a suffering child. (Maybe I should have thought of my own parents as suffering children and it might have helped. I just didn't have the perspective -- I was, after all -- a baby, a child, too.)
My long-time dear friend, C, grew up in the family I wanted. They spent their weekends painting the house together, they played board games in the dining room, shared clothes, helped each other bake cookies. They were not perfect, they just liked each other's company from the word go. It was as simple as that. C's dad invited me to join in their family outings, where I stuck out like a sore thumb, but loved every minute of the hikes, treks, trips I stunk at. C's dad listened to my family angst and cautioned me not to wish my life away, and to be careful what I wished for. I hear his voice in my head when I remember how I wished to have babies, knowing that the deities would never let me have any easy kids, but believing that we could just work really hard and overcome anything.
Slowly I am learning that when my child rages, when it comes from his complicated suffering, I can try to help him find his way, but that I can not simply make it go away with super human effort. Sometimes the only effort that helps even a drop is the effort I make to be patient.
We do make steps forward once in a while, and things are improving in some regards. We are not entirely stuck. I love Peaches and my rooster with all of my heart, even though the family of my childhood dreams still looks like a fantasy.
Like the people who ask in a real way, "So how are you, honestly?" Because sometimes I tell them, honestly, I'm awful, and they tell me I'm not. I know where they come from, a good place, but the little angry shrew who lives inside me insists on speaking up tonight, and so she's going to write about (please don't read this) her awful truth:
Yes, even if it's a good day, I mostly feel awful. There aren't enough of those good days, and they're sandwiched between tortures. I don't sleep enough, and I'll never ever catch up on the sleep I've lost -- I'm a hundred years old, based on how many hours I've spent awake. And it's not all the Rooster's fault. He's gotten lots better. Add to the mix a newly two-year-old with a thing for 3 a.m. contact, and I'm awful. I am too fat, and when on earth does any well meaning suggester fathom I might exercise? Puleaze. I look awful. Tired, fat, immersed in negativity, with nothing to wear and a bunch of miserable gluten free crap in the fridge. I hear the word "no" at least 60 times on the average day, and I mean a weekday, when I send them to school for seven or eight hours. Weekends? Awful. I hear the word "want" 200 times a day on a weekend, sometimes by dinner. Awful. And you know what I hate? While I drive with my left hand (I'm right handed) through heinous urban traffic, I serve food, manage requests like a book-on-tape dj, retrieve books, settle fights, hold hands, wipe noses, serve more food, clean up food, and... "ANOTHER TAPE! ANOTHER TAPE NOW, MOOOOMMMMMY, NOW. NOOOOOOWWWWWWW!" Awful. I complain, and that makes me feel awful. I hold it in, AWFUL AWFUL. Really AWFUL, like I'm decaying and putrid. I manage to find (by delaying the needed sleep a bit) only enough moments by myself each week to blog here, and NOTHING ELSE. I don't get haircuts, I don't see friends, I don't shop, I don't go to classes, clubs, meetings, nothing. I am never, ever alone. Not even in the bathroom. I get behind on paperwork and housekeeping so I can keep up on laundry, diapers-times-two, GFCF organizing, therapy hunting, and it's all worth it, it is all my choice, it is all for a family that I long prayed for and deeply adore, that was the only thing I ever really wanted, but I swear to you, there are sickly awful times amidst the gratitude, because it sometimes feels like there is no ME left anywhere in the whole world.
My rooster can make it better with a hug and a kiss, and a moment of growth, of good pragmatics, of happiness, but the truth is that the vast majority of the time, the rooster's mood is one hundred percent awful, the kind of awful you would not tolerate in your friend, your employee, your boss, your boyfriend, your mother-in-law, or your hairdresser. But you can't break up with your Rooster. You have to take the awful and try not let it show. The Peaches can help with smiles and play, but did I mention she just turned two? Even if it isn't awful, it isn't as Peachy as one.
Someone says, "No, you're okay, you're doing okay, you really do seem okay." I have nothing left to say to that. I can just add that to the awful pile inside me.
Yeah, okay, I might be dramatic and intense, I've been called that before, but I'm pathologically honest, and if I ever get checked into a padded room somewhere, I guarantee you no one will be able to say, "Gosh, and she never gave us any signs that anything was off!"
In my family, the highest compliment I ever heard any of my elders bestow on any sainted figure goes something like this, "She's been through thus-and-such, but you would never know it. You never hear a word about it." I know that I am an utter, complete, unmitigated failure at silent suffering, and therefore that black mark plagues me. It's awful. I can name 50 stoic friends and family who have suffered awfulness and never once uttered the word. I don't deserve to walk in their presence. They are good. You know exactly what I am, and the word good is not it.
Plenty of times I manage to feel grateful for the big and small blessings in my life. I do. I really swear that I DO. I notice the good, I revel in what I can, I avoid keeping score. You might not believe that side of me, as I rant out of my head here in this space filled with my pettiness and greed, but I do seek the good and wallow in simple joy with abandon when I can. I'm sure you know the result of that: the Deity Smackdown, the one step forward, three steps backward dance.
When I come back around to awful, there's nothing for it but to blog.
I really hope you didn't read this, because you'll surely and rightly despise me, but I'm glad I wrote it. It took the edge off of awful. Maybe now I can rest.