?

No sleep. No energy. Nothing left to give.
I feel like I've been dessicated and am crumbling.

"My So Called Life?"

Have you ever seen that tv show about people in airports? Help me with the name.... my mind is going... It's a "reality" program, and they show the most dramatic things that happen as people in transit get stuck, get angry, freak out, lose it.

I hate that show.

Which tv show best describes your daily life? Leave a comment with your answer, or email me, or write about it on your own blog, if you feel so moved. But please, somebody tell me what that airline show (that feels so much like my life) is called, too...

Two Steps Forward...

Peaches turned 2 Friday, and we celebrated with a small but lovely gathering in our backyard with family and treats in plenty supply. It may have been our first successful celebration in quite some time, full of good moods, probably because we kept things small, simple, dialed back. Some of the family members had not seen either of the kids in some time, though they've been hearing about all of our collective struggles and strides. They offered helping hands, such as taking the rooster for a walk with a plentiful cup of organic strawberries (his absolute favorite treat) at the perfect time so that Peaches could enjoy the verboten chocolate cake without hurting his feelings or wrecking the festivities.

With spare offerings aside from fruits, veggies and cake, we explained to our guests our initiation into gfcf eating, and I commented how much healthier the rooster looks -- purple shiners receding -- without stopping to think, as you surely are now, what the deities would do with such brazenness.

He woke up at 4 crying, a full-blown ear infection.

So Augmentin does NOT fall under the whole careful diet, toxin-avoiding path we're trying to forge. One point for deities. But we turned down the meds for weeks when first one doctor and then another commented that he had a slightly red ear, that we could delay medicines as long as he didn't get any worse. Once, LONG before we knew much about the spectrum or much of anything that would later come to pervade our lives, I felt uneasy about giving our boy another antibiotic, and I asked my sister-in-law, a pediatrician in another city, what could happen if we let the infection run its course without treating it with antibiotics. He might get better on his own, she said. He might get worse. Worst case scenarios? Hearing loss. Meningitis. Damage to his brain...

Tomorrow is the first day back to school, and I'd been fantasizing that the rooster's teachers would notice an improved boy, well rested, better regulated, adjusted to his new diet, and ready to talk, play, listen, learn. Tomorrow will, though, also be his first day back to expectations, and he'll be 24 hours into Augmentin. So, I've cast aside my fantasies, and (DEITIES, hear me now) I'll be happy if we all get through the day.

But deities can't move time backward, and they can't do a thing about the great day we had celebrating with Peaches. Not only do I have photos to prove that a good time was had by all, I am actually IN some of them, if you can believe that.

Walking the Talk

I grew up in a family that believes in giving, but quietly, not making a big fuss. So it is with some awkwardness that I announce I've decided to do the local Autism awareness walk and fund raiser at the end of April.

Local friends, it's April 26 in Pasadena at 10 if you want to join me. My team is called (big surprise) The Roosters, and we surely welcome the company.

Hi ho, Hi ho...School Daze

So there is a school out here for kids on the spectrum, and when we first heard about it after our IEP, we set about trying to figure out how to get the rooster in so he could get one-stop-shopping for all his PT/OT/speech needs (despite the school's geographic undesirability). Then, we met with the developmental pediatrician, who cautioned us that the environment at this special school might be too restrictive for our boy. His issues, though numerous and challenging, are never the ones that make the top 20 list on brochures and autism checklists, and he desperately needs to learn verbal pragmatics, so she told us that a social group of less verbal kids could result in the rooster actually struggling more to communicate effectively.



So then we set about trying to figure out how to keep the rooster in place and cobble together a variety of pull-outs, after school and weekend interventions, etc. We made calls, researched our options, investigated. That happened just as the rooster began really deteriorating in his behavior, and he got sent home from school for losing his cool.



So then we decided to go see the special school for ourselves. My husband told the tour leader his dilemma. "This is a wonderful place, but our developmental pediatrician said the rooster is the kind of kid who needs the least restrictive environment so that he strives to meet his language goals." The woman giving the tour guide gently and kindly tried a little Doctor Phil, and while I'm no Phil fan, it helped us realize that it ain't working for us right now. She said, "If your son has a really rich curriculum where he is, but he can't access it because of behavior is so disregulated, then it is not meeting his needs, is it?"



We still have many decisions to weigh and battles to fight, but I think we might have found a good place for our boy at this special school. Maybe not for always, but maybe for now. In some ways I can see where a special school could be "restrictive," but in a way it also feels just the opposite, too. It could open a world of ABA, OT, and much more that he can't get where he is now.



While on the tour, a boy with a roosterish quality caught my husband's eye and waved, smiled. He was having fun and learning on a typical school day. A teacher walked by pushing a cart full of drums, shakers, noise makers. The faculty sparkled with energy. Kids got their needs met. I don't know, but that doesn't sound too restrictive, does it? Does it? I'm a teacher, so you'd think I would know, but I'm asking.

Which Rooster is Calling?

I am an avid reader, minored in English, am not one to shirk from challenging literature. But my pet peeve is when there are too many characters, and I can't keep them all straight in my head. I admit to putting down some books unfinished because the cast grew too confusing.

There are too many roosters lately. They come and go, and sometimes change on a moment's notice. I can't even tell anymore which one has been here longest, or when I saw this or that one last. I am confused. Woefully confused.

Tonight, the rooster sauntered in late with a babysitter (our school is on vacation, but I still work), after I got home, after I started to worry for the second day in a row, but how could I complain when I could see in the strut as he got out of the car and walked toward the house that the calm rooster was making an entrance? His voice, his mannerisms indicated green lights on all systems, so I made no fuss about their tardiness, I just paid the sitter and sent her quickly on her way so I would have a chance to play turn-taking games outside with my two sweet kids before the sweetness hit the road.

We played baby basketball, we rode the scooter, we spun in circles, taking turns each time. No one cried. The rooster got out one Frisbee for himself and then made a point of getting the other one for Peaches. After I would push him on a toy, he would say, "Now it's Peaches' turn!" This lasted at least half an hour, but I think longer.

Out of nowhere, he pushed her. Not hard, but she landed on her butt, and I know she had the same thought I did, "Which rooster is this now? And is he staying?" For a couple of minutes the rooster blew raspberries at us, ranted, and made little sense, in a major snit, and then, poof, he melted back. "Let's go inside and play!" he called. "I'm ready to watch some Sesame Street!"

The variability adds painfully to the mystery of why: have dietaries changes helped? But then why the sudden outburst? Was he well pretty well regulated from a day of physical exertion and free play, but just not perfectly regulated? Is it any of the other many changes we've tried? Is this just part of the deal?

Do not get me wrong: inconsistency beats the heck out of consistent misery. I am grateful for each good moment. Living with our breath held feels a bit reminscent of growing up around drunks, but I can deal with it. It is easier, though, when I don't wander too far into wondering why...

Well Shut My Mouth

Pardon my Southern, but ain't no way I'm going to tell you about today. Nuh-uh. No way.
You could not pay me all the gold at the end of the rainbow to describe the rollercoaster ride of THIS day. For one thing, all these lying memoirists making headlines will come to mind. You'll think I'm spinning some crazy yarn about the brand new babysitter who made sure the rooster's dad and I both took down her cell number, and then disappeared for the entire day with our son without answering the phone that rang with increasing frequency for the next seven hours, more and more after I got home desperate and frantic to see no sign of them.
But for darn sure there ain't no way I'm going to tell you about how the rooster acted when he came HOME grinning ear to ear with the babysitter, who claimed he spent the day with her at the park WITH FRIENDS, having a BLAST. Nuh uh. I am from the South, and when I am adamant, I need the twang, and I reckon that only a FOOL would tell you how the rooster and his sister sat happily playing for more than an hour with little plastic cake decorating pieces from one of my baby showers. You could beg me on your hands and knees to show you the video we shot, so entranced were my husband and I, and I wouldn't let you see them on our kitchen floor, taking turns, or hear them talk about sharing the plastic baby dolls and pretending to feed them. No, I don't talk about these things anymore, I don't mention when the rooster of sweeter days shows back up at our house for a spell, and I don't tell tales about the excellent use of pronouns and question words and abstract language and referencing and reciprocity. Not for all the tea in China am I going to let the whole darn Internet know about the kisses and giddy laughs I got tonight, boy. And don't you try and get me to talk, either. You just hush right up about the whole crazy thing. Tomorrow is a new day, and when it really, really, really sucks, THEN you'll hear from me. I will have plenty to say about that.

Comfort Levels

The developmental pediatrician phrased things in a way that struck me: she said she felt "comfortable with an Autism spectrum diagnosis." It's just because I'm a word girl that I turned that phrase over and over so many times. Of course, I know what she meant.


The doctor, like many, sees that the rooster's issues are atypical, even of atypical issues. Autism is like that, and so are other things, and so we're all "comfortable" with that diagnosis. And we're going to try to be hopeful, even in the challenging times. "Even if I'm wrong, even if this is something else, he still needs the same therapies." Right. Exactly. The whole point is to help the rooster.



Her advice: Rally your team. That, and "Work your butts off right now." We need a plan for school, first and foremost, and she thinks the rooster will be best with an ABA shadow teacher. We will have to start by finding out if our school will allow that, and, if so, then find out who the district will give us, hopefully someone from the list of better organizations the doc provided. If our school says no, we need to find another school, and that moves to the head of the triage line. Next, we need all the OT we can get. The district will provide some, but we need to get back in to the Regional Center system for more, which means more evaluations, evaluations, evaluations, and more time. We also know we need language, both what the district offers and also someone with lots of expertise in unusual kids like our boy. We hear this "costs through the nose." Lower on the list: considering floor time, therapuetic riding lessons, play groups, and support for the mom who lives on the brink of losing it.

At least I can say rallying has begun. Troops are aligning. Thank you to those of you among the ranks. Today a wonderful friend and her husband came by -- they knew both kids woke us up a few times in the night and that we're fried -- and babysat for two of the fastest hours in recorded history. My guy and I just walked around a shopping area nearby in a bit of a daze and noshed and stopped in the used book store for reading material not about spectrum disorders. We got home to find the rooster sweetly playing ball and Peaches napping. On a good day, with the kids in two different rooms, primed for success, and the rooster getting undivided attention, my husband and I hope we look like overreacting parents with kids who seem like they are mostly doing okay. That would suit us just fine. My dear friend totally understands what we're going through, and she's seen our kids on good days and bad. I feel the relief of having left her with them on a good one, and I'm glad she and her kind husband didn't see them in action early yesterday morning.

So with our "comfortable" diagnosis I reach the place in my blogging (at post number 50, I believe?) where the totally unfiltered disclosure begins to become gradually less comfortable. I don't know how to process this shift yet, or really any of the shifts. I just know that, while I live as open book, always have, I'm a big girl and can choose that for myself. He's a little guy, and I need to start considering if he'd really appreciate my endless full disclosure.

The point of this whole process is about helping the rooster more than it is about helping me. Blogging often helps me TO help him. I will struggle to find the right balance, the one that feels most comfortable.

Diagnosed

I feel like we finally completed our badge requirements and now it's time for an induction ceremony of some kind. Ladies and gentlemen, we have a diagnosis.

And a lot of homework.

And too many choices, none of them easy.

I'm drinking a Mike's Hard Lemonade. I think the last drink I had might have been in 2003. I quit drinking because alcohol makes me too tired. For some reason, that makes me laugh right now! I am cracking up! Probably because I am drinking. Or maybe I'm drinking because I'm cracking up? And now I have to go to bed. I'm exhausted.

Meet you later at the club house?

Found Time

Some people have asked, "How do you find time to blog?"

I think most of these people mean it in an encouraging way, like, "Wow, all that on your plate, and still you manage to blog. Good job."

Sometimes I get insecure, and what I hear is, "Aren't there more important things you should be doing with your time?" Probably no one is even saying it even if I am hearing it - I, the consumate worrier.

But if anyone ever did say that to me, I have an answer. Or ten, as is my way.

First, never worry that I'm blogging when my kids need me with them. When we're not all at school together, or not all in the car together, we're all something else together, together. I usually "find the time" to blog by trimming all the fat from my schedule in the hour after they are asleep and before I am. You know, like showers. Save the planet. And bills. I used to take care of bills and paperwork before bed time. Then I realized I could label three giant moving boxes from our garage SHRED, FILE and TRASH, dump most paperwork into the latter, and let everything else stack up on the kitchen counter for a few months while I blog my way back to enough sanity to manage a checkbook again. Which brings me to my second point...

I do not actually find time to blog. It just happens. Unplanned, naturally, like growth. I am posting right now, but I swear I didn't set out to, I came to look something up online and tada, here I am.

Third truth: I don't think I could have gotten through the last few months with as much of my soul intact if I hadn't found blogging.

So, nope, there really isn't anything more important I should be doing right now. Like my mom's friend once said about the diamond tennis bracelet and red convertible she squeezed out of her cheating husband, "It's cheaper than therapy!"

Like Sally Field

There are days at school that my eyes begin to drip, drip, drip while I'm smiling, and I find myself on the verge of saying, "You like him, you really, really like him." Today was one of those Sally Field days.
You see, there are some people in our school community who just DO like my son, and not because he is my son, but for himself. Forgive me, I know it's a shameful thing to say, but their affection for this boy often catches me by surprise. It is with painful candor that I own this: I am the one who likes my son BECAUSE he is my son, and sometimes that is all I can muster.
But clearly these people have much to teach me, and I come as a ready and eager pupil.
A close friend, who I am lucky to also have as a close colleague, sat down on my office floor yesterday -- A BAD DAY -- to check in on with the rooster as he sat in exile. She let him climb all over her, take the clip from her hair, and give her a whole new hairdo, with his hands still sticky from lunch. In my temporarily disconnected place yesterday, I couldn't muster much by way of thanks to her for that half hour generously and tolerantly taken from her day. Today, this treasured auntie told me she enjoyed it, that she likes to see my boy, and I could feel her genuine fondness for my wild child. She cares about my whole family, and I care about hers, too, and so I know that our shared history does make a difference. But what I could hear her say today was that she likes the rooster. She likes him? Yes. I know how Sally felt, that mix of surprise and delight.
And then there is the library teacher, who came to our school only recently, who never knew me before I had kids. She has had to say goodbye to my book-loving boy mid lesson because he just could not handle library class, and he needed to be escorted by a classroom teacher back to the room to settle down. She did not look surprised to hear that he had been sent home early. Still, she stopped me in the hall today to ask how things are going, concern evident in her eyes, her body language. "You know," she told me, "when some kids act out, I have to remind myself to keep cool. But when others, sweet kids like yours, act up, I just feel so strongly that they can't help it, that they are so sweet inside..." She was talking about my rooster? Yes, she likes him.
And it isn't just the grownups.
The second grader who lives down the street can approach our car at zero hour -- 4:30 in the afternoon, when I'm wrestling the two shrieking greased gorillas into their car seats after school -- and she can flood the back seat with love and goodness, and by the time we say goodbye, the gorillas have evolved, settled in, and resemble children again. Yesterday, she ran to the rooster on the play yard, where he was refusing to share with kids his own age, and trying to grab a child's cheese. She grabbed him and hugged him. He melted, but I know her, and even if he'd continued to sulk and seethe, as he might have, she would hug him again the next day. For some reason, she likes him. She really likes him.
I won't go so far as to say he's going to win any popularity prizes or anything like that. He has plenty of people who shrink away when they see him coming. I live in fear that some members of his small fan club might switch to that approach if he keeps having more bad days than good ones. But, for now, I'm enjoying knowing that some people like the rooster. They really, really like him.

Some Kids I CAN Help

WOW.
I have a crazy love passion for the Internet.
It makes things happen. It connects. It HELPS.

Last night almost as an afterthought I asked for help with this project I'm working on with some delicious fifth graders. There are 60 kids working beautifully and THINKING so hard, it is the joy of my days lately. Anyway, I tossed out a small handful of their topics, and already one person wrote to offer a resource.

SO, just in case there are more people out there with expertise on any of these topics, I cannot resist listing them below. Please forgive me for the annoying advertisement like this for something totally unrelated to the rooster, but since I'm not a heck of a lot of help to him these days, it feels therapeutic to help someone else's kids.

Looking for people with expertise on:
Esther Morris, women's activist
Myrtle Beach golf
Ozarks
Stone Mountain, GA
Graceland / Elvis
Little Rock Nine
Zion National Park
Indy 500
Roswell / UFOs
Baraboo Circus Museum
Oklahoma's Native Americans
Creole culture
Sequoyah
The 1st Nuclear Submarine
Maple industry
Fairstones
The Dust Bowl
Paul Bunyan
Hoover Dam
Bering Strait
Mt Rushmore
Grand Canyon
Iowa Caucuses
Appalachian music and dance
Fluorescent rocks
Rock and Roll Hall of Fame
Surfing
Hell's Canyon, Idaho
Blue Crabs
Blueberries
Olympia National Park
Holland Tulip Festival in Michigan
Sacagawea
Lewis and Clark Train in ND
Oprah
Anasazi
Tornadoes
Coal mining disasters
Japanese Inernment Camps
Tennis Hall of Fame
Broadway
Houdini
1933 World's Fair
Edwards Air Force Base
Jesse James
Selma to Montgomery Walk
Eli Lilly
Colorado's wildlife
Quoddy Head
Salem Witch House
Yellowstone
Dupont
Robert Frost
Kensington Runestone
Lumber Industry in Oregon
McCoys and Hatfields
Manatees
Sweet Potato industry of North Carolina

To The Office

The rooster got in trouble today. Basically, he got the preschool version of being sent to to the office, which, since that's pretty much next door to my own office, meant I got sent home from the office, with one angry, aggressive little boy. We were out of there before noon.

Anyone who knows anything about us knows why this happened, right? (And I'm talking the micro why, not the macro.) Yes, let's all say it in unison, now: deities. About 20 minutes prior to the rampage, (and I later heard that the administrator in charge of preschool offenders had been looking for me for -- YES -- about 15 or 20 minutes) I, knee deep in a research lesson with 60 delightful fifth graders, said, LIKE SOME DEATH-DEFYING FOOL, "This is just about the most fun I could ever have at work. I love this project." The perfect signal to my exit from the project, would you not agree?

What on earth is happening to my little boy? Up until about a month ago, he was difficult, but charming, and he saved most of his negativity and aggression for home life. Sure, his teachers dealt with a lot from him, paticularly that he could not share or handle circle time, and that he had terrible trouble communicating with kids. NOW, however, we have a boy who screams, "AHHHHH! Ahahahaaaaa!" at the drop of a hat. He grabs toys from others and taunts them by holding the coveted object over his (tall) head. He hit another child with a shovel. (Thank goodness it was a flimsy plastic one, but STILL.) Kids avoid him. He spits. That is so disgusting. I can't figure it out, I can't get to the cause, I surely can't stop it, and so I'm so freaked out that I've gone all ... detached. I'm not crying, I'm not aching, I'm not ... here. Not exactly here. Something inside got turned down way low, dialed back to inaudible levels. Of course, perversely, I like it, I relish the relief. But I am smart enough to know it's not a good sign. It's numbness, and that isn't healthy. It's the kind of sensation that finds me offhandedly commenting to my husband, out of earshot of the kids, "So what time you think he'll get thrown out tomorrow? Because I really have important work to do at school." WHO SAID THAT? It might have been me, but it was not my real voice, if you know what I mean. I love my boy, so big, forever, but I've disconnected today, and I need to fess up to that right here and right now if I hope to reconnect.

When I picked the rooster up, I tried every thing I thought was "right." I told him that he couldn't play today, because he was hurting and scaring his friends, but that I know he is a good boy, and I'm going to help him feel better, so that he can make better choices tomorrow. Okay, I chunked it for him so that he didn't have to hear all that at once, and I repeated it infinite times, with lots of synonyms. I had him repeat to me several times why we were going home early. "It's not okay to hit friends," was his general reply. I didn't want him to feel like a bad person, but I also made sure not to make the day too fun; I didn't want to make him hope for escape from school every day by doing the same actions. We checked out picture books from the library about anger, feelings, hitting. I asked him about his feelings. I gave him lots of love. But the whole time, as he alternated between more loving than I've seen in weeks and going full tilt mad on me, I was struggling to find me in it all... I wasn't really connected, no matter how many times I pinched myself.

And nothing I did helped anyway - not for more than a few minutes here or there. And I knew it wouldn't. Which sentence that I just wrote is scarier? I do not know. The scariest thing of all is my innermost fear that whatever troubles the rooster is something worse than autism, something that will only grow as he does.

The only thing I know for sure is that tomorrow will, without any doubt, be just as bad as today. Maybe worse.

But, since I've already done a miserable job at parenting, let me at least do something for those fifth graders I had to abandon. They're all researching different topics, and it gives great joy to my inner geek. Some kids still need information, and "experts" they could interview would help a lot. So, dear blogosphere, if anyone out there knows about any of these topics, or could point us to resources, I'd LOVE to put you in touch with a darling researcher, age 10, by email or phone, at your convenience:
Appalachian music and dance (West Virginia)
blue crabs (Maryland)
fluorescent rocks (NJ)
Fairystones (VA)
Salem Witch Trials
Eli Lilly
Robert Frost
Texas City explosion

I Get By

With a little help from my friends, I manage to get by in this most difficult period. I fervently hope that some day not too far off I will make up for, pay back to, balance out the karma, and give the way I'm receiving. Right now all I can offer is thanks. This makes me feel frequently ashamed, but I guess that has to take second place until I can (soon, I hope) take better care of myself again.

Emails sustain me. Calls support me. Strangers become friends, friends with ideas and empathy. A teacher friend gets an idea to ease the rooster's transition at the end of the day. Another offers to help me put the kids in the car after school. She gracefully turns a blind eye on the wreck inside the vehicle. Another comes by to give me an hour alone while my wild ones run loose in the yard. Handwritten letters and cards arrive, and it is not my birthday. One even comes with candy. Jokes! People send me humor. Each day, some new niceness comes. Despite my deep struggle over how to accept such beautiful, generous kindness, these gifts are getting me by right now.

I feel like I've been sitting Shiva for a little while now. I am trying to get up, get on, be a big girl. I thank everyone for their patience. I fear I grieve too slowly.

I have a small print I bought after a bad breakup to sit on my desk and remind me to befriend myself. After seven moves, I'm not sure where I put it last, but I plan to dig it out this weekend. It is from Brian Andreas' StoryPeople collection, and it says, something like "There are days I drop words of comfort on myself like falling rain and know that it is enough to be taken care of by myself." I am trying to get there. Soon.

Car Talk

I like to think I'm about as far from a material girl as you can get (no way I'm about to be mistaken for Madonna, big M or small), so I certainly don't believe that a car says all that much about a person. But today, I took a look at mine, and thought in a flash that it could symbolize me in several pretty scary ways.

So, I decided this will be my first intentional meme. (A newbie, I found out I started one before by accident.)

How does your car represent your life?

I drive an old, tired, dirty, no-frills Saturn. It has power nothing. (How many bloggers crank down their window the old fashioned way?! I scraped together my pennies to buy it, my first car, 12 years ago, back when $250 a month scared me, but I scrupulously paid my loan off nearly a year early.) I remember the new car smell lasting longer than I expected, but car care took a back seat, no pun intended, once kids came along. Snacks, Disney audio cassettes, tissues, and emergency diaper supplies litter my front seat. Goldfish and raisins litter my back seats. I angled my rearview mirror for a slight view of the road, and a good hard look at the wrestling mats I call car seats. I am almost never alone in my car, and while I drive, I multitask. I spend most of the time in my car fulfilling requests and demands - for food, for toys, for stories, for intervention, for mediation. Like my life, my car gets too loud for my liking, and the crying jags inside take a toll on the shock absorbers. My car needs some TLC. It's always low on fuel, makes a few weird noises, and sometimes smells kind of off. Crayon scrawls decorate one door's interior, giving it a wounded look. I wish I could afford to trade in my car for something more fuel efficient, but also something roomier, more comfortable, more convenient. I have given up on style. Sometimes I am embarrassed by my car, but not in a status conscious way. My car might be kind of gross, but it's mine and I feel like I should be the only one talking smack about it.
Clearly, I'm not just talking about my Saturn, here, people.

Your turn.

i am always awake forever

OKAY. LET'S EXAMINE THIS DEITY THING AGAIN.
Ever since I wrote about melatonin working for the boy? Peaches. Peaches wakes up every single (infrix) night. That means I had a decent week's sleep between when it first worked and when I moronically said so.
I have not slept in four years.
Two a.m. Three a.m.
Now.
This sleep deprivation? So totally torture.
Tonight I will NOT go "sleep" in that (infrix) twin bed with her. So she is screaming her head off. For over an hour. Soon everyone will be awake.
DEITIES? YOU HEAR ME? DEITIES, YOU SO SUCK. I HATE YOU TOO, DEITIES. IN THIS MOMENT, RIGHT NOW, FOR THIS INSTANT, I JUST HATE EVERYTHING. BUT YOU DEITIES? I REALLY TOTALLY HATE YOU MOST OF ALL. I HATE YOUR STUPID GUTS.

Anyone who reads my blogs clearly needs a good laugh. (I know I do.) I'm going to try to keep a sense of humor about this post.

Tonight my amazing husband came home from work, took one look at the scene, and scooped up our two children. Out they went on a stroller ride before I could so much as plead for my sanity.
This is why I married him.
Poor guy. I think before he met me, he went to theaters for drama. Now he gets plenty of that at home. I have this guilt complex about it. No, I didn't directly cause the dramas in the family we built together, and in fact I prefer romance over drama every day of the week, but I do come from a long line of drama, and so I'm afraid it might be in my DNA.
Come to think of it, it seems brazenly naive that I ever presumed to make undramatic babies. My husband might have laid back genes, but they didn't stand a chance in the mix, did they? Clearly, drama is dominant, calm is recessive.
Anyway, our first born has drama written all over him from the word go. He had quite an intense birth, setting records, even. My mother and grandmother came from the East coat for the big event and stayed in the hospital for all 32 hours of labor, including when my mom strayed in the wrong direction looking for a smoke break (I know, gross) and wandered inadvertantly into a gang pushing in to the ER looking for a shooting victim. No wonder the rooster didn't want to come out to greet the world! I had to push so hard that my mom, holding my legs, clenched her jaws and out came -- her filling. She cracked it. Finally the rooster decided to come out, too (once he was coaxed by a vacuum).
And then came our departure from the hospital. I am not making up what I am about to tell you! Not a single word! Go ahead and steal it for your screen play or novel; just expect a speedy rejection from your editor, with this note: "Not believable!"
So the rooster is two days old, and we get this little bundle of screams all checked out of the hospital, ready to go home. We get wheeled down to the hospital's front doors, and my husband goes to get the car. As I'm waiting for him, I notice the security guard sitting across from me gets a strange call on the walkie talkie and leaps in to action. Up drives my husband, and he loads us into the vehicle. We pull slowly out of the parking garage, and big gates come down behind us, closing the entrance to the hospital to all traffic. How strange! We are inching forward, nervous to drive with this red-faced, shrill infant hollering and flopping around in his too-big car seat. Just as we officially cross into the street, we are met by none other than the SWAT team, and what looks like the entire LAPD staring us down, pointing loaded weapons, yelling in to megaphones. "You cannot drive here! Drive the other way! The other way!" The other way means that we are being ordered to head the wrong way on a one way street, but, of course, we do not hesitate to do as we are told! At every turn, road blocks; we made our way home for the very first time by inching through a treachorous maze of drama, drama, drama. Took us two hours to get our baby home for the first time, just 15 miles from the hospital. Turns out that a gunman had fired at police, who had chased him, and he ran, armed, into the mall a block away, halfway between the hospital and the school that my kids now attend where I have worked for many years. If it sounds like a very dangerous part of town, you should know that, in fact, it is nearly in Beverly Hills.
Drama follows us, even into the hills.

If

If I didn't find blogging...

that sounds like the start of a very sad story.

Thank you for reading this.

Every parent knows that "no" is the power word.
For the rooster, it goes way beyond that. A reflex, a tick, a habit, a delaying tactic, a script, a power word; it means no, it means yes, it means, "yes, but..." He sprinkles it liberally over his salad of scrambled language. Don't think you can imagine how often he uses the word, because you will underestimate. Here is the general gist of it...

Me: Rooster, you are building a great tower!
Rooster: No, that's not a tower, that's a BLUE tower. (It IS a blue tower.)

Me: I see a dog!
Rooster: No, that's not a dog! (It IS a dog.)

Me: Time to turn off the TV, rooster.
Rooster: No! (Then he turns it off.)

Me: I saw you playing with your Batman toy today. You sure do like your Batman toy.
Rooster: NO! I do like Batman, Mommy! MMMMmmm! (special "no" grunting pout noise inserted)
Me: You don't? You don't like Batman?
Rooster: NO!
Me: Daddy, rooster says he doesn't like Batman any more! Can you believe that?
Rooster: No! I like Batman! No, mommy, I LIKE BATMAN! Stop it mommy. I DO NOT LIKE THAT.

Me: Do you want some of my chicken?
Rooster: NO! (He then takes all of my chicken.)

Me: Rooster, good job! You are riding the tricycle! Good job!
Rooster: No, mommy, this is NOT a tricycle. This is MY tricycle. It is not YOUR tricycle.

Me: Peaches, do you want to wear your pink dress to the party?
Rooster: NO! Peaches doesn't have a pink dress. She doesn't have it. No, Peaches, you do not have a pink dress. You have a blue dress, okay, Peaches? You wear a blue dress, okay? (She DOES have a pink dress. She does not have a blue dress.)

Me: Rooster, let's go this way.
Rooster: No, mommy, let's go the OTHER way. I want to go the other way.
Me: Okay, let's go the other way, then. That sounds good.
Rooster: No, mommy, NOT THAT WAY! AHHHH! AHHHH!

Me: Rooster, you say "no" a lot. Can you say anything else?
Rooster: No, mommy. You stop talking. You be quiet.

FEAR

Scared.
I am.
Today I asked my husband,
What are we going to do?
He shuffled oddly forward.
Irked me.
What are you DOING?
Putting one foot
in front of the other,
he tells me.
But HOW?
School, doctors, bills, jobs.
Mitochondria?
Tests. Answers. Diagnoses.
Friends, birthday parties. Social awkwardness.
Therapies, therapies, therapies, therapies.
Family.
Expectations. Travel. Travel expectations. Expected travels.
Week days, weekends, holidays. Summer!
IEPs, Regional Centers, doctors.
Strangers. Ignorance. Questions.
It is all too hard, too many feet, one at a time.
I want to run.
Lord, give me patience, and hurry it up.
I am scared tonight of even the fear.

Doctor Doctor

Dear Pediatrician,
For months and months I have considered writing to you. I wrestled with the notion, I debated it with my husband, and worried how I would find the right tone and balance. Fortunately, in the interim I have discovered blogging. Considering is no longer an option; this letter insisted that I write it once I realized that I don't have to actually send it to you, except via Rooster Calls, my blog.
We came to you as patients desperate for our child. Our first pediatrician, Dr. G, dismissed things we knew our boy needed - things like physical therapy, and we heard excellent things about you and your practice.
Many people to this day express shock that Dr. G didn't work out for us, that he is a great doctor and has helped many families. Certainly when we interviewed him, we thought that too, but we hadn't planned on having a child with special needs. Dr. G sounds like he takes great care of children with typical development. We came to you because we needed more. And now I am sure people would be shocked to find out that we don't feel like we got more. Unfortunately, I feel like we have wasted some valuable time, precious time for our boy. I want to urge you, the next time you see a family like ours, to think of us, and learn from us, and get them the help that they need.
One specific thing that I want to tell you is that I believe deeply that sleep is a medical concern. Do you? It brings tears to my eyes when I think that we came to you just a few short months ago having learned on our own through emails from other parents that we could try melatonin with the rooster. It took a few calls in to you, but finally you figured out a dose and gave us the go ahead. For the first time in three and a half years, we slept. It worked on the very first day. Every visit we ever had with you, I know I indicated crippling exhaustion. I never remember you even acknowledging this issue more than possibly putting it in your computer, but I feel sure you must know that sleep plays a significant role in cognitive development, that sleep has been proven to play a significant role in suicide. Melatonin helps us. Sleep helps us. I had reached a deep, dark place in misery from my lack of sleep, and while we aren't completely out of the dark, we are so much better now. I wish you could have given that to us years ago. I wish I didn't have to find it on my own.
Next, I want you to know about autism. One day after I'd been trying for a few visits to talk to you about my concerns, you gave the rooster stickers, asked him to give one to his sister, asked him to give her a hug, and then told me, "Kids with autism can't do that." Please don't ever tell that to anyone else. Inform yourself. If 1 in every 150 kids or so has a spectrum disorder, you're going to see those kids come through your practice, and you need to know how to help them and their families. You're going to have to do more than send them to that neurologist in Beverly Hills who charged us $200 to tell us television would make our son autistic, but maybe it might be "the good kind. Like Bill Gates." I left her office feeling angry, confused, mistreated, another chunk of precious time wasted, and wondering if that "doctor" had been abusing substances before our visit. I know you sent us to her trying to help, but in the last three years, your referrals have cost us more in time and emotional toll than they have helped. There was the eye doctor who took six months to get in to see, but who always sent us away because our "poor child" always looked "sick and contagious." (I found a new eye doctor by putting out a plea via email to other moms. He did our son's surgery, and for the first time in his entire life, our son can hold his head up straight, can see straight, and does not have double vision.) There was the ENT who told us our son needed surgery before he would turn three but that he cannot operate on children before they turn three, that we had come to the wrong place. At least he did know the ENT who could help us, so that only cost us two visits and copays before we found help. There were the allergists with poor bedside manner whose first control failed, and whose second told me this child with lifelong purple shiners under his eyes doesn't have an allergy issue, at a cost to our child measured in pricks and pains. We're still looking for a good allergist; it's on the short list, which actually is long. And what about the xrays? We had one round of xrays that showed that the rooster had previously had pneumonia, and we'd never known it. We had xrays for him when I was six months pregnant, and the radiologists were openly angry with me ("Why did YOU come here? Where is his father?") because being pregnant meant I could not hold the rooster down. When I called you to suggest you not use these radiologists anymore, as they also got into an argument in front of us about which one would get stuck holding my sick child ("wrestling kids is not in my job description"; "But I had to hold the last kid!") you told me that place was best because they had a relationship with your office. And yet when your colleague in your practice mentioned in passing at a drop-in visit when you were not there that she suspected my boy might have a rare and hard to treat problem called "primary ciliary dyskenesia" but that I would need to talk to you about it later, I was left to discover on my own that many people who have that illness have their heart on the opposite side of their body from what is normal, and I asked you, "Does the rooster have his heart on the right or left?" I think I had to ask you once in person and twice through email while you "consulted your records" and eventually told me you couldn't find any xrays in his charts. You know what I did? I put my head against his chest and listened. To my unskilled ears, I have to tell you: my son's heart is right where it should be. You suggested we consider doing a biopsy on our boy to find out if he has this rare condition, this imotile cilia disorder. I asked whether a definite diagnosis would impact his treatment in any significant way. You said, "It certainly wouldn't hurt to have a definite diagnosis." It might not hurt you, but a sinus biopsy under anesthesia would hurt a little rooster. He's had surgery twice in his three and half years already, and if he's going under again, we need a good reason.
The other suggestion you offered for my son's chronic health problems (and purely health problems seem to be the limit of your scope) angered me on a deeply personal level. How many times did you tell me that I should consider quitting my job and staying home with my son until he built his immunity? You never suggested it, I noticed, to his father, and we take turns coming to your office, so you had ample opportunity. Never would that have been financially good for us, but in light of the new possible causes for the medical problems, I feel like I have to point out that staying home would have been just another useless prescription among far too many. Another dead end, with a huge price tag.
Recently, we got in to see a developmental pediatrician with an excellent reputation. I am a little cautious, a little wary - I have learned that reputation doesn't equal solutions for our family. But so far it seems that this doctor sees the big picture, she looks at the whole package, from medical to developmental, including sleep, allergies, hearts and all, and she promises to help us chart a path that will help our family. She cost a small fortune for our family, but for once it seemed like an investment in the future, and in hope - if so, it will be the best money I ever spent. I was surprised to learn from this developmental pediatrician that she knows your office so well. We found out about her, we got in to see her, without your help. I wish you had even told me that such a specialty exists. I had never heard of "developmental pediatrician," but without using those exact words, I am quite sure I had begged for one.
We have asked her to refer us to a new pediatrician for our family.

ABCs - Teach Me!

My head is throbbing.

Our dream doctor mentioned she might want our rooster to get ABA treatment. Our neighbor uses floor time. My husband is interested in the DAN diet. I've been trying to read about it all... every acronym leads to another... it's all too much!

Can anyone tell me where I buy the Reader's Digest version of spectrum disorder ABCs?

I don't know how to choose the best route if I can't read the road signs.

Confession is Good for the Judge

When the rooster was only about seven months old, we drove about 45 minutes south to see his grandparents, and we left him to play with them while we went out for lunch - a rare treat. At that time, it still made sense that the rooster spent almost all of his time with my husband and me, and we enjoyed that enough that we didn't actually find ourselves yearning too strongly for babysitters. After all, I had not been back at work long, and sometimes I secretly wished I could afford to stay at home for a year or two. In his pre-mobile, pre-verbal days, the rooster presented many challenges still, but he also melted me into a puddle; I could pass the hours just watching him, smelling him, tickling and kissing. And then, of course, my husband would say, "Hey! My turn!" And I realized we needed some date time.

So after we went out for lunch that day, we stopped in a store and bought a birthday gift. We asked the sales girl a question about our purchase, and she said she would have to check, as she had not been in the shop for several days. Then she said something that stuck with me, that comes back to me often. She said, "Work days are they days I'm at home with my children. This is what I do with my time off!"

I have written before about how judgmental I can be, and how I hope I am working on that. At the time, I considered this woman's comments and I judged her to be callous, insensitive. Poor kids, I thought.

Ha! Perhaps I'm getting taught my lesson the hard way once again.

On a regular basis, people tell me, "I don't know how you do it, working full times, having two kids..." They trail off, but the unsaid comments hang there anyway, of course. They know I don't just have two kids, but that I have a special sort of rooster. The truth is, I understand what the salesperson meant. I have long since stopped saying TGIF. Sometimes I dread the weekend. Some Mondays, when I am candid about what I did over the weekend, I say, "I survived." Parents who stay at home with their children have my utmost respect, have my admiration, they make me realize my inadequecies.

Could the rooster and I manage spending all our days together? I ponder this as we consider where there might be school that fits his needs, and what to do if we can't find one. Financially, this terrifies my husband and me. We rely on dual incomes to keep the roof over our heads. But we also know that we will do whatever the rooster needs, that all options remain on the table, and so the question begs revisiting. If the rooster and I could manage spending all our days together, would it help him, or hurt him? And what does that question say about me? About what kind of person I am that the question needs asking to begin with?

I have a little routine with the kids. I ask them, "How much does mommy love you?" They say, "So big!" I ask, "For how long?" They shout, "Forever." I have loved them since before I met them, I love them with fervor, but I know my love has flaws. My love is constant, but suffers from my mood swings. My love has no limits, but it does show itself darkly at times. I know what wedding vows say about patience and kindness, but boundless love does not make me perfect. It's hard to admit, hard to write about, but I don't know if all the love in the world would make me a successful stay-at-home mom to the rooster.

Today is Saturday. So far we've been to the bakery, the park, and for a drive. We've played in the back yard, taken baths, eaten lunch. We've photographed precious moments, had hugs and kisses, we even spent a good fifteen minutes watching a squirrel steal an orange off our tree and eat it on the back porch. These are treasured moments. These are the ones that get me through the other ones, the ones I don't feel like writing about today, the ones that have me looking at the clock, calculating that bed time is still more than four hours away.

Judge me, and I don't blame you. I deserve it. But tomorrow, I know part of me will be thinking, TGIS.

Pieceful Resistance

Today I long for the days before the spitting. Rooster has never complied, but he used to subscribe more to a more passive resistance.

When the rooster had his IEP with the first school district, right after his third birthday, he charmed them. They wrote up a glowing report about how this child needed no services, despite the fact that they noted delays across the board. They even seemed to enjoy his noncompliance. I think this example typifies the rooster's agenda of control:

One of the five members of the IEP team comes over to me. "He just refuses to do the puzzle activity, and we really would like very much to have him do it. Do you have any strategies that might get him to do it?" This actually makes me laugh before I realize that I'm not being appropriate, and try to turn it into a cough. They try another approach. "Does he have any high interest subjects, so that I might find a puzzle of something he likes? Does he like sports?" So I tell them animals. One woman disappears for a couple of minutes and comes back with a box.

"Rooster!" she exclaims. "Look what I have! I have a puzzle of HORSES! Do you like horses?" The rooster nods like a bobblehead. He watches intently as the woman puts together part of the horse puzzle. Then he scrutinizes her face, which, funnily enough, has an expression he has always loved to label, "Puzzled!" Looking at her, he puts his hand on his chin and rubs, just as he always does when he does "puzzled" face. She turns to reel him in. "Do you know where the horse's head goes?" The rooster nods. "You do?" More nodding. "Oh, good! Can you show me where the horse's head goes?" The rooster takes the puzzle piece from her hand. In a louder voice than he's used so far this day, he enunciates, "The horses head goes BACK IN THE BOX." And the puzzles were, as he liked to say, "All done!"

Miracles of Modern Medicine

So far the good doctor has lived up to my guilt.

My husband and I took the rooster to the homiest office you ever saw today, complete with doilies and a living room and the whole shebang, and I admit that I do feel guilt that we got the appointment only because a friend called on our behalf. Who did the doctor not have room to take as a result? I can't go there. I do know that the rooster needs the good doctor, and so it was worth the guilt, just like the cake I ate with a shovel.

If you scroll through the D section of my cell phone's address bok, you might get carpal tunnel syndrome; we've aquired at least a dozen doctors in the last four years. So many have approached the rooster like the story of the blind men and the elephant until now. An eye issue, one declares. His ears! another cries. Yet another cannot get beyond his language struggles.

After seeing the rooster both on and off his game during our two-plus hour visit, the developmental pediatrician really saw the whole package. And it was the rooster she saw, with only a few hints of the dark twin. But even on good days like today, the rooster lacks reciprocity skills. He can't take turns, he can't cooperate, he won't be nudged. He gave that office a bit of a beating and made the doc earn her fee. This is more or less how she put it, "When the rooster sets the agenda, he can be charming! But when he doesn't, he can't function, and his behavior falls apart."

And, of course, there's all that tangential language -- if anything, his language was the car that refused to make noises at the shop the way it would at home. But no matter; the doc put all the pieces together and came up with the whole rooster, and she didn't deny that there is OT, PT, speech, and behavior intervention in our future. So why did I leave the doctor's office today feeling like I'd gotten good news? Really, we had gotten no news at all. We still don't have a diagnosis. We go back in a week for the results of the evaluation. But for the first time, we got more then head scratching and a list of what our boy can't do. I am encouraged because this doctor offers us more than just a diagnosis when we go back, she offers the medicine that our whole family so desperately needs: a plan for intervention.

So once again I find myself counting down the days until a doctor's appointment, and, if you still have any stomach for my greedy requests, once again I ask for your good thoughts.

Back in Business

Okay, I don't know what is going on around here, but in the last hour, SOMETHING happened, and I'm hoping someone reading this can tell me WHAT.

The rooster is back. He's back. Ask my husband. Transformation!

Almost a week ago, the rooster disappeared like he'd been in the Parent Trap and had a twin. I was not nearly so fond of this twin as of my real rooster. This twin had a strange affect and body language, and spent all week spitting at people. Rage simmered under this twin's surface. I drove this twin home today. I can't figure out where he went, but I have a few theories. Please, I really need someone else's opinion.

Last night, for the first time in about a month, we didn't give the rooster Melatonin. Could it have been building up to some side affects? And then when it got out of his system, the rooster returned? Could we have been giving him something that hurt him? I HOPE NOT. BECAUSE WE GAVE HIM SOME TONIGHT. AND I DON'T WANT THAT TWIN BACK TOMORROW. Plus, you could say, "Well, just don't give him any more Melatonin." What I would hear is, "Well, so what if you never sleep again?" I mean, sure, we could do that. But let's look at our other choices, shall we?

The rooster seemed like floor time set him off last week. Could it be that he just got around to forgiving us for it? I HOPE NOT. BECAUSE WE ARE GOING AGAIN TOMORROW.

The rooster has had a snotty nose for the last 3 1/2 years, but sometimes it's worse than others. Tonight he seemed to be clearing up somewhat. Maybe when he feels better, he feels better, if you follow me?

And diet -- what about that? Maybe it's a gluten thing, or a -- I don't even know what this word means let alone how to spell it -- a cassien thing? Or dairy? Maybe he had a sugar thing going on?

Maybe he understood that we're going to see a doctor tomorrow and he wanted to make us look nuts when we try to describe the past week. "I swear, Mr. Mechanic, it's made the terrible noise for a month now..."

Or, here is a theory. The rooster is a changeling. He's going to have ups and downs and good times and bad. Period. We had bad, really bad, and now it's easing up.

Or, this: more than a few people who really know how to send good thoughts and vibes and prayers and all that great stuff have been pulling for us. Yep, I'm talking about you now. Maybe you brought the rooster back tonight. And if you did, let me tell you, I am baking you some kick ass cookies.

Because I watched him skip down the hall. I heard him VOL-UN-TEER, "Mommy, I love you so much!" I looked at my husband, and he looked at me, and we both absolutely knew one hundred percent without any doubt that a different boy had been sleeping under our roof for the last week, but suddenly, out of the blue, mid conversation, over a bowl of messily slurped soup, tada! THE ROOSTER CAME BACK!

I want to tell everyone! EXCEPT THE DEITIES WHO HATE ME. The rooster is home!

What Helps

So on and on I've been going about what hurts. Blah, blah, blah, right. Everybody's got stuff going on, and I don't know about you, but I'm sick of hearing me whine. I was starting to give myself a headache.

So, risking the wrath of the deities, I will change course now.

Let me tell you what helps.

Love helps. Today a beautiful woman brought me a heart on a ribbon, and the heart says, "Be Strong." I am taking it with me to the doctor tomorrow.

Emails help. My inbox overflowed with love last week, and the senders all acted as if they ought to send more. More than love? Never heard of such a thing.

Chocolate cake helps, and we must have had five kinds at lunch today. I grabbed a shovel.

Retail therapy helps. For a minimalist, anti-commercial kind of gal with limited resources, it shocked me to get a buzz buying a new knife block at Target when I really went there to get staples. You know the slippery slope; next I got giddy at Amazon.com and then splurged on a slipcover that cost more than the second-hand chair I've been meaning to spruce up for years.

Help helps. A dear friend came over yesterday and played with my children for a while, and I got a much needed respite. I even got to cover that chair.

Laughing helps. (Someone, please send jokes. I have not been laughing enough.)

Hugs help. I collected them all day today.

Work helps. Bury me in a research project and for a while I forget to fill every nook and cranny of time with worry.

Calls help. My mom called today to say, "So you find another school. Some people right now are trying to find a transplant or a transfusion or a ..." You get the picture. I like to hear my mom say, "So what?" It always means love. "So what?" she said today. "He is ours and we love him." And love helps most of all.

Dear Doctor

Dear Dream Developmental Doctor,
I'm not sure if you have children of your own or not, but every time I mention your name, people tell me that you know kids, and that you help families. I worry that they have built my hopes higher than I should get them, because I look forward to our appointment with you more even than I looked forward to my ultrasounds.
I know that it will be hard to hear what you have to say, and I know that it will hurt to name our son's pain, but I cling to hope that you will know how we can help him. My hope scares me. It embarrasses me. I am not one well aquainted with high hopes, and they fit me like someone else's clothes. But I have a little boy who is struggling mightily, who has gone from difficult to heartwrenching behavior, who seems like his own skin feels uncomfortable, so for him I have to hope. He needs me, and I need you.
What can I do to help you help us?
What can I tell you, show you, give you?
I have read and researched, I have bought books, I have blogged. I have taught children for 14 years. I have wrestled my lovely boy in a struggle for peace since he was born almost four years ago. I have watched his every stride forward, his every plateau, his every setback. I have kept journals and records and files about his medical health, his sleep, his issues. I will do or try or let go of whatever you tell me to help him. Just, please, consider all the many, endless possibilities of what troubles him, and the gazillions of possible ways to help him, and map out the best course for us, so we can try. There are so few hours, so many constraints, for two lost parents and one struggling little boy, the boy we call our rooster. We will do the all the hard work, just please tell us which work to do. I know it's not an easy task, but I have seen the look on people's faces when I tell them we have an appointment to see you. They have faith. Faith, that's higher than I can reach these days, but I come to you with my hope in my hands, and I bring you my sweet boy.
Respectfully Yours

Finding our Center

When your kid doesn't fit in, it hurts.
When he cannot operate within the classroom, it's scary.
My kid doesn't fit in and he can't operate within the school that has been the foundation of my community for 12 years.
My son doesn't have friends at school, while almost all my friends are at the same school.
Until I met my husband, this school was the only thing that kept me in this part of the country, thousands of miles from my family and friends. School became my family and friends, my safe corner of scary urban sprawl.
I had a wedding shower here.
I got my Master's here.
I took a pregnancy test in the bathroom here.
I had a baby shower here.
His baby blankets were knitted by teachers here.
The rooster came here to visit when he was 3 months old.
I took his picture on the playground on the first day of school. At the end of the day, he ran across that same playground, arms flung wide, shouting, "Mommy! Mommy! Mommy! Thank you for the preschool!"
This school has loved that child since before he was born. I called here to tell them the news of his birth from the hospital down the street before he ever had his first diaper. I felt like the school could help a tiny bit to make up for being so woefully far away from family.
Everyone here is pulling for the rooster. Everyone here reaches out to him, wants him to succeed.
His teacher's own son was in my class over a decade ago, and she wants to help my boy. His after school care provider used to teach special ed before she came here, and she goes way above and far, far beyond what anyone could expect to get him through the unstructured hour before I pick him up, because she wants to help my boy. His music teacher, his library teacher, they both think he's a special guy, they want to help him. The school psychologist gets down on the carpet, bad back and all, and reaches out to try to help him, despite the fact that the rooster just backs away, screams, and lately spits, too. I watch sometimes through the one-way mirror just downstairs from my office.
I grieve to know that my little boy is on a journey that will lead him away from this place, this place that I thought of as a special home I had to offer him. He cannot use the gifts here. I grieve.

Bad Metaphors

Not to show off my scientific genius, but in my opinion not all crap makes good fertilizer. Some crap just stinks up the world, draws flies. And other crap makes the buttercups bloom.

We faced a tough call when we considered whether to accept our neighbor's generous invitation to share floor time again this Friday. The rooster had the worst week of his life, and for a guy born difficult, that means we truly almost needed a police escort home yesterday. In my mind, this crisis had to relate to last Friday's floor time. Yet floor time had also seemed to my husband to provide important tools for working with our boy. So he got the number of the floor time therapist and asked what to make of the rooster's rage. Basically what I gathered from her answer is that this shit we're in now is the good kind. It means floor time is probably helping the rooster to work out some difficult personal and interpersonal issues, like sharing, cooperating, and expressing his anger. But not to expect buttercups overnight. So we'll suck it up and tackle floor time again Friday, after The Appointment.

Here is the other thing I got today, really seemed to get. Friday's doctor appointment will confirm for us that our rooster is autistic. While we're still kind of in shock about it, the initiated seem to have no doubt. The appointment needs to be about asking, "So how do we help him?" The rooster's autism does not come out in words or actions a heck of a lot like anyone else's we know of yet, but it isn't different, either. So the real spectrum I need to examine are the 31 flavors of possible supports to offer him. After all, there are only so many hours in a day, and I want to make sure there is room to just be, amid the PT, OT, speech, floor time, or whatever else it is that the expert can suggest. I know whatever we choose will have its struggles, I just want to know how to choose the best fit and how to find balance. I just want someone to help me know how to tell when something is right for my boy, even if afterward he seems more inclined to yank his sister across the back seat by her hair while she's still tightly buckled.
And here is the other aha I'm getting: All the people who write to tell me it will get worse before it gets better make more sense to me now; I had read those more as warnings, but now I understand with an "aha!" that instead they were encouragement of a sort. You all meant that it CAN'T get better without getting worse first, that "worse" is the first step to better. The buttercups requires some crap -- it's part of their process.

Hazards

I cannot safely drive 35 minutes each way with the two kids to and from school, and I need advice. The problem is that I do not have even one ounce of energy to read the advice, let alone heed it. In the hopes that I will somehow discover that ounce of energy, here is what I need to know from anyone with wisdom to impart:

If a rooster knows how to get out of a car seat, how do I keep him in?
How do I keep Peaches safe from rooster attacks?

It's like I had a bag of trick in September when school started, but I have exhausted all the books, audio books, yummy car snacks, stuffed animals, songs, games, car toys, and interesting routes home. I am tapped. I tried it, I bought it, I sang it, I gave it, it's gone, I'm out, I'm dry, I'm lost, the carrots are eaten and the sticks are broken, and we are a wreck, wreck, wreck, wreck, wreck.

Perspective

We reached an all time low tonight, and I wondered if we will hit even lower, or if this is rock bottom. It got me thinking about perspective.

Perspective. The word kind of connotes math for me, so no wonder I find it a struggle. When I think of the word perspective, I think of art, space, measurement. As a word girl who cannot draw a stick person, find her way home from the mall, or guess your weight within 40 pounds, I would not consider perspective among my strengths, at least in that sense of the word. And my track record for estimating "rock bottom" wouldn't win me any prizes either.

There were times in the BC ages (Before Children) when I thought I felt pretty low, sad or lost, scared or anxious. I grew up with an alcoholic father who ran off when I was ten (along with all our bank accounts), my mother brought home a few even worse boyfriends, I had a childhood seizure disorder, and in my twenties I got an anulment after choosing Mr. Wrong, all of which seemed massive at the time. These things still seem larger than getting gum stuck on my shoe, but in hindsight I would recalculate their scope as vastly smaller than, say, driving home from school today with the rooster.

So I cannot help but wonder what, say in another five years, today will look like; pebble, or boulder?

I asked the school psychologist, "How big is this?" Understandably, he looked confused. "I have lost perspective," I told him. "I need your help. When I go into a store, and I see a pair of pants I like, I have to take four pairs in to try on, because I cannot begin to tell which size will fit me. So you have to help me size up these struggles we're facing now." But, of course, he couldn't.

In preparation for our Big Doctor Visit on Friday, I got out all of my rooster memorabilia. We have albums, baby books, day care journals, etc. There he is on a boppy, and here he does the combat crawl, and look - remember how much he used to tilt his head before surgery? And I had forgotten about that noise he used to make when he ate, but his teacher wrote about it, and I'm so glad she did. She also wrote about the rooster as a toddler loving to steal other kids' pacifiers, which I recall vividly.

Which will today be? Will I have to look back at my ancient blogs a few years down the line to remember that the rooster went on a rampage in the car one hot March day when he was not yet four, or did he sear it into my consciousness until I'm so old that I can't remember how to make toast?

After my bad breakup, and before my wonderful husband came along, I took a writing class that felt like the best therapy life could offer a word gilr like me in the pre-blogging era. I thought I was feeling pretty far at the bottom -- like base camp at the Grand Canyon -- and I wrote a poem about my hopes for the climb up and out. It's not much good, because I'm not much of a poet, and it's certainly self centered angst, but tonight seemed like a good time to blow the dust off it in my quest for perspective. It helps me count my blessings - my jumbled, messy, ordinary, extraordinary blessings, amid the pebbles and boulders on my journey, without daring to be too positive. (And if you read my last post, you know I just waved my arms in the air. Wave yours for me, too - I think the deities might lurk around here.)

Journey

before I go
there will be more pain
I know there will be more pain before I go

others will go first
taking pieces of me
pieces I need
pieces I cherish
they will leave me aching
they will leave me to pay the steep fare
for their journey away from me

before I go
there will be more pain

pains that sear, burn, sting, throb
pains that shoot
and spread
and torture my fragile flesh
pains that humiliate

before I go
there will be more pain

goings and comings and sunderings
lovers that leave and friendships that fade
and longings unfulfilled

before I go
there will be more pain

I will stand alone
and I will stumble
I will err and I will wrong
and I will change, and not always for the better
before I go
and that is certain

but will there be more joy before I go?

will there be
wedding days
and sacred vows
and unconditional love both given and received?

will there be babies
healthy, strong and mine all mine
to raise and love and teach and tickle?

will there be snapshots taken and scrapbooks filled
and will there be more joy?

before I go

Curses

Never, ever be too positive.
No, you go ahead, I was really making a "note to self."
Self, shut your happy mouth, and just complain a little.
This is my mantra, my MO, my core belief, and yet I still manage to screw it up all the time, and, whammy zammy, kaboom, the dieties smite me.
So Friday the rooster had his first ever floor time, and it seemed to go well. My husband felt it informed him, he had stategies to suggest to me, and the therapist shared some valuable observations about our boy, who seemed to handle it in stride. It made me feel hopeful. A picture of shared floortime with Sweet D across the street began to emerge as a promising aid to our current struggles. AND THEN I WENT AND SAID ALL THAT CRAP OUT LOUD, AND RUINED THE REST OF THE WEEKEND.
Let me put it another way: if you ever read anything I write and your inner voice judges me as a negative, self-absorbed cry baby, that won't bother me not even one single smidge. On the other hand, if you find yourself noting my remarkable air of optimism and faith, I hope you smack me when you find me, and you can probably find me hiding in a bomb shelter somewhere. Positive. Does. NOT. Work. For. Me.
The rooster spent this weekend spitting, hitting, kicking, throwing, grabbing, taunting, screaming, insulting, refusing, demanding, struggling, battling, hurting. To me, all his signs read, "DON'T YOU DARE THINK YOU CAN CONTROL ME!!!" Floortime, sadly, had its blowback.
I tried to love it out of him, and it didn't work at all. I tried to get tough, and that was as laughable as it sounds. I tried using "techniques" I've read about, and guess what. So now I will bow to the deities.
My husband has long mocked this core belief of mine, this relationship I have with the spirits who despise me. He uses a mocking tone to ask me about "the motes" - but I've seen him once or twice make the same gesture I do to wave them off after accidentally saying, "This is great!" or "I think they'll probably offer me the job!" Deep inside I think he knows that it's not paranoia if they really are out to get you (I mean me).
And why do I think I'm special enough to warrant my own diety posse? One theory I haven't ruled out goes like this: When I was little, I was sick a lot. (Big surprise, genetically speaking, right?) My mom didn't expect me to live, because the doctors told her not to get her hopes up. A couple of times she came home to find the sitter and me inside an ambulance, and one of those times, the paramedic said into his radio, "We have an infant, female, dead on arrival." Somehow they revived me, and I'm guessing that the dieties are still pissed off. They said, "Okay, go ahead. Live. But don't SMIRK about it." So.
Deities, everything feels sucky right now. The days are long, the nights are long, rest time is brief and largely interrupted, and I am scared, scared, scared. J and I are lost and confused and overwhelmed, and each and every single day a new fear grips at us. We take a lot of abuse and have very little fun. Our confidence level looks worse than the economy. We are two intelligent, educated people without a clue. In four years, we've aged the way presidents do, until my reflection actually startles me most mornings, when I bother to look at it. We make admissions about our darkest feelings, and the bare truth burns me with shame. Our rooster can be a very hard person to like. Rage seems to smolder within him. I do not really want to get out of bed tomorrow morning. I do not really feel like I have what it takes to lather, rinse, repeat. I am here, but I don't know where. I hurt from the inside out. My head throbs endlessly.
Deities, are you happy now?

If You Blog - Questions from a Neophyte

Oddly, I do not think of myself as a blogger. This first person stuff is not anything I've ever done well, and I have no idea how these sentences keep pouring out of me. I feel like a runaway train. And I have so many questions that I thought I should ask real bloggers. Those of you who are, though, probably have no time or interest in taking a survey. Hey, I don't blame you. But I'm a teacher, so ask I must...

- If you blog, do you tell people in your family or at your job about your blog?
- If so, how does that impact your writing?
- Do you keep hard copies of your blogs?
- Do you ever not post comments you get?
- How do you balance writing versus reading?
- Do you think of it as a chore or a diversion?
- Do you use RSS to keep track of blogs, or what?
- Do you worry about what you write, or what readers will think?

Like I said, I do not even expect you to answer these questions! I'm just compelled to ask them.

The Mouth of My Babe

The rooster's uncle is visiting today. The rooster will be four in May, but he still wears diapers. While I changed him today, I asked one of my usual questions, "How much does mommy love you?" Then, his line should have been, "So big!" To which I am supposed to ask, "For how long?" And he says, "Forever." Today, though, the rooster would not play. He just looked right at me and said, "but I don't love you. I love Uncle Jason."

Okay, my logic knows the deal. I only winced and stopped breathing for a few moments before going about my business.

But he's repeated it a few times today. "I don't love you." My logic is bored with reminding me that these are just words. I sort of live and die by words, in some ways. And not always so much by logic. My heart is bruised.

Do you ever wonder if your child didn't love you, and you believed that, how any coping at all would be possible?

My Village by Way of LA

From the moment I got to Los Angeles, I began telling people I didn't plan to stay. Fifteen years ago, of course. And it is home now.

I have caught myself complaining a lot over the years about how I'm a small town girl who got lost a very long way from home, that I need to live where people bring you food when you move in next door and you help them shovel their walk when it snows.

Well, I'm kind of thick headed and stupid sometimes.

The other day I counted, and I realized I've lived in 16 homes in 36 years, eight of them in Los Angeles. We moved to our current home late last July. Guess what happened? Of course. A woman who lives across the street stopped by, along with her dog Zipper, while we were still getting unpacked from boxes in the garage. She wanted to drop off some homemade jam for us. I'd shovel her walk if it weren't in Southern California.

I feel a little lost in the less literal place where our family lives right now... the land of acronyms and neuroscience and spectrum disorders... but oh my goodness, I've never had so much jam from my "neighbors" near and far.

This afternoon the rooster and his dad went across the street - and I do mean right across the street, about 150 feet at most - to try floor time for the first time ever with our neighbor, Sweet D, also almost four and on the spectrum. Let me tell you, sharing like that beats a cup of sugar by miles. AND, when I checked the mail, I found a package from a dear, dear friend who lives only about twenty or thirty minutes from me. I'd told her recently about the rooster's issues, the upcoming appointments and school decisions facing us. Inside the package, I kid you not, was a Cadbury bar and a card saying that sometimes kind words and chocolate help get us through. This same beautiful woman showed up at my front door not long after I had my second child with a healthy lunch, cookies for dessert, and the supplies I'd been weeping about running out of when I spoke to her on the phone that day (diapers for the rooster and breast feeding supplies), so I guess it shouldn't have surprised me, but I did admit without hesitation that I am kind of thickheaded.

Tonight, I opened my email to find such warmth and responsiveness to my recent posts that it overwhelms me, and in the best possible way. What I am trying to say is this:

I live in Los Angeles, I hang out in the blogosphere, I have neighbors near and far, I am struggling, I am fortunate, I am grateful.

ALARM!

I was awake when the alarm went off, of course - I always am.
I leave it set anyway not because I have faith one day I'll sleep, but because I set it to NPR, and I love to listen, and I don't usually listen anymore with kids in the car.

Today the alarm really went off. The latest autism vaccine story came on. I'm sure you probably heard it today. Now, I am pretty sure I have nothing left in my reserves for getting into any big frays; I have had little space in my heart for even examining the vaccine connection, as this life and blog really fill me to capacity. But one thing always resounded in my intuition, enabling me to avoid the question best: my rooster was born my rooster, same as the day he was born. As I've written before, he was born hard, he is hard, I love him fiercely and honestly. But. So.
Only maybe about 45 seconds into the story, though, the alarms begin blaring through my head. It's an alarm I heard faintly before, today louder. The flu shot I got while pregnant. Not mercury free I don't think. Before I took it, I called the obgyn, I called my husband, I called my friend the doctor before and discussed the risk. I work in a school full of flu each year. I get sick pretty easily sometimes. Flu can assault a pregnancy. I got the shot. The rooster was born the rooster. But might he have been born less hard? Be less hard?

Okay so does it matter now? I mean for me, for the rooster? Whatever caused his challenges, the why probably does little to help. Usually I am there. Today, somewhere else. Frightened. Blaring. Deafened.

This morning something happened as I listened to the radio. I pictured the rooster well, my blonde boy talking comfortably, in the here and now, articulate and happy in his skin, amid a crowd of friends. Healthy. Unvaccinated. Unvaccinated in utero. For some reason, if there is guilt in me about shots, the guilt feels so much more horrific if I took those shots for myself, leaving him hurt. The alarms escalate as I write this. I think maybe you can hear them. Help! Too loud! It hurts!

I don't feel too rational right now. I desperately want you to write me, anybody, and say, "I did not get a flu shot while pregnant, so I know that your flu shot did not harm your rooster." Believe me, I know there are countless other things you could tell me - philosophical, political, scolding, remonstrative -- and that you might be right or valid about all those things, but in my panic, that does not sound to me like an off switch for the screaming sirens in my head AT THIS MOMENT. My first blog, this, dashed off in the moment of an experience, forgive the drama of it...no, I do not really expect you to write me reassurances. Of course not. None of this is really RATIONAL, it's just the thoughts in my head typed out loud, and isn't the solace of that process why I blog?

Oh! My rooster is up now, running toward me wanting a few morning cartoons. I paused my writing and my panic just now to hug and kiss... interrupting my ocd-like mental scab picking... Yes, the sound is abating some. I KNOW that whoever the rooster is, he is my beautiful boy to embrace, and that I am lucky no matter the bad days (daze). I know. I know we do the best we can. I know we cannot go back in time, the waste of regret. I know we might never know about the vaccines, that it's a personal decision, that polio SUCKS.

I know. But I am alarmed nonetheless.

The Third Shoe Drops

Some of you wondered about the third coincidence?

I wandered over to Kristen Spina's beautiful blog to wade around and soak up wisdom. She had written several blogs for me that I'd been thinking of but now I know they're done and she said it better than I could've... about sleep interruptions, about realizing that you expect your child to "grow out of it," about the realization that this is not a phase... wow, so much like what we're experiencing in my house, that would be enough of a coincidence. And I see she's from LA, and will be here this summer, and I think maybe I can find her the tutor she says she needs, and that would be coincidence enough. But then I find she wrote about Rooster Calls. I don't know what to even make of it. All I know is that I've had, my whole life, collections of writers I admire, and I've imagined their lives, imagined meeting them, but none of them ever knew it. Now I have a writer I admire who actually made me feel welcome in the community. So the third coincidence actually has three coincidences. What a coincidence!

Today's Bad Daze

He has good days, he has bad days.
The music teacher says, "He brought such energy to class today, your boy."
He walks on the play yard and a little girl, but big to him, calls out his name, runs to him with a welcome smile.
I peek through the one-way mirror and he's doing it -- whatever -- the same as everyone else.
He goes to the doctor and says, "Take out your otoscope! You need to look in my ears."
I give him two fig cookies, and he hands one to his sister.
"Good night mommy," he says, headed off to sleep, a soft kiss from a lizardy boy breathing deeply, cradled on daddy's shoulder.
He has bad days, he has good days.
The library teacher says, "Today I had no choice to send him back to class."
He walks onto the play yard and two girls from his class shriek, run, hide.
Within moments after I arrive at his classroom window, I must look away, I must walk away, I must.
The doctor says, "I don't know... there are tests we could run..."
Even desperate food bribes fail to keep our commute sane or safe, as he Houdinis out of his car seat to pinch, poke, spray his sister and I with spit.
We quickly stir the melatonin into some milk - diets be damned - and wonder when the nightmares will subside.

HELP! Request for Information

Everyone who leaves me comments seems much smarter than me. So forgive me, but I have some questions. Feel free to ignore me and go, "Yeah? Well, I have questions TOO, buddy. YOU go solve your own mess. I read blogs for inspiration, NOT QUIZZES." Or, better yet, tell me some answers:
- Anyone out there well versed in LAUSD? (ie, anyone out there want to help me decipher the choices they're giving me?)
- So is soy ON or OFF the DAN! diet? (not that I'm convinced we have the stamina to even try the DAN diet, but it's not off the table, so to speak)
- Does anyone else's kid make up huge, long, creative, dramatic NEW stories every day? ("Suddenly, the rocket ship flies up, up, up into the sky...Boom! It crashed down on daddy's head. But daddy did not cry.") I'd pay you good money to explain to me how these epic preschool tales fit into the whole picture of a boy with serious language delays and deficits. The school psychologist just keeps saying, "atypical, atypical, atypical..."
- Can you give melatonin at nap time AND bed time, or just bed time?
- How do you find a decent pediatrician? Our asked the rooster to hug his sister, and when he did, he said, "See, he's not autistic." Now that is what I call sophisticated analysis.
- Speaking of questions, we go to the developmental pediatrician next week. It's a fortune (to us) for the initial evaluation ($2500!!!!) and we only managed to get in through a favor... so I want to be sure I ask good questions and get my money's worth! If anyone wants to suggest the best questions to ask... I'm all ears.

PLEASE forgive the neediness of the list. I'm just amazed by how much I don't know, and I do believe knowledge is power.

Coincidences Come in Threes

You almost couldn't make this stuff up and get away with it, but because it's true I have to tell you.

First of all, I went to a conference for work yesterday. It was exactly two work days after our IEP, so I was behind with my responsibilities (the IEP and related travel took half a day) so I considered bailing out on the conference to catch up on the avalance that is my desk, but then I figured a day of immersive learning would take my mind off things, especially the dark insinuations of that district psychologist you're probably sick or reading about. Right? So I'm in a software seminar with a professional development focus, and I'm loving not just the content, which is right up my alley, but the presenter, whose Southern accent comes from the same place I do. Suddenly, she sits down and says she's sharing her seminar time with a group that wants to showcase new IEP sofware, and I have been selected (by a pink sticker on my computer) to come up for a ROLE PLAY. I am told to do the IEP of a child who is having trouble getting along with classmates and who has oppositional behavior. I have been assigned the role of the school psychologist. The woman pretending to be the parent acts defensive. The man assigned to be school principal makes jokes. Everyone groans about how much IEPs suck. I am the epitome of the "affective filter" I learned about in education -- sometimes students can't really hear the message of the lesson when the emotional stakes feel to high to them for personal reasons that might be unknown to the teacher.

I don't know about you, but the whole thing struck me as a weird coincidence. Not a good one.

But to balance out the scales, it just so happens that our neighbors directly across and one house down have a little boy, Sweet D, who has a spectrum diagnosis. We found this out not long after we moved in about six months ago, and that was coincidence enough at the time (though we were as yet undiagnosed), but just the other day we found out that Sweet D, who gets OT and speech at home, and who also happens to be just four weeks younger than the rooster, needs a partner for his floor time and speech therapies. His mom offered, since the district covers the price for them anyway, for the rooster to come try out a little free therapy! And, it just so happens that the rooster has no school this Friday (parent conference day), so my husband was planning to stay home with him anyway -- the very day that Sweet D has floor time with the therapist. A plan is hatched. I think even the rooster will be thrilled -- Sweet D has a double swing set and everything.

Weird stuff and gray hairs usually come to me in threes. So I am wondering: what coincidence does tomorrow have in store for me?

Good Night Gorilla

Last night, I read the rooster and Peaches a sweet little book before bed called Goodnight Gorilla. Really, there isn't much reading to it, since it's a book of very few words. The pictures tell the real story.

Since things were going well with them both on my lap happily turning pages, and since I'd been reading up about all the cognitive and inferential difficulties the rooster might have with his still murky issues, I decided to let the language arts teacher in me out of her cave and I doled out lots of reading comprehension questions to the preschool set. And you know what? They nailed them. Peaches got the points you might expect for a gal not yet two, and the rooster interpreted characters' feelings based on facial expression, made predictions, answered "why" questions, the whole nine yards. Last night, when we read together, we were in "It'll be okay land." It feels like it might as well have been a thousand years and a million miles ago now.

Tonight, no bedtime story from this mama, who lost her mind before we even finished the 35 minute commute, who, by the time her little tantrum throwing darling finished spitting in her face, was screaming profanity like a very, very, very bad mother - the kind who is IN Hansel and Gretel, not the kind who does the readaloud in the arm chair with milk and cookies.

How bad was today? Suffice it to say I just spent the last hour on Amazon loading my cart with books that are NOT fairy tales -- every title related to the spectrum that I could get my newly IEPed hands on. And the ones that seemed to focus on behavior? I considered next day Fed Ex for those.

I have to admit something that scares me as I read blogs about other kids on the spectrum: the absence of the anger, aggression, violence, dislikability that I see, but haven't described until now, in the rooster. I am left to wonder/ponder, does the rooster have a mental illness, something darker and more devastating than being on the spectrum? Or do I simply lack the strength, patience, and understanding of any good blogger, let alone any good mother? If I were half of who I want to be, I'd be able to manage his outbursts, protect Peaches from them, ease the pain I know they must cause him too, understand them, reduce them, keep them to myself. But I can barely endure them. Sometimes I rage too. And then after I feel the guilt. It's so ugly, this process, this side of me and us. I can get very dark here, very doomed, very The Lorax. This is all scary stuff to admit, and I'm dreading the comments I'll get, but I've got some kind of drive to tell this story right now, and I almost can't seem to stop even if I want to.

So badly had I wanted to blog about the triumph of last night's "reading" before the waves crashed upon it and washed it out to sea. Instead the context I have to offer is a contrast, a riches to rags failure. I let my husband tuck in the rooster tonight without so much as a kiss from me, and now that he's in bed I'm kicking myself, but yet I'm not about to risk waking him up and letting him take that job off my hands.

Here is to better nights. Here's hoping for more stories with happy endings. Here's hoping I can keep myself out of the oven. Good night, Gorilla.

DURST

So I want to help you appreciate "durst." You'll have to come with me into the moment, about 3 or 4 months ago.



Okay, we're in the surgical center where the rooster is about to have eye surgery less than a year after having surgery for tonsils, adenoids and tubes that basically traumatized all of us and did not provide him much (if any?) relief from his medical and sleep issues. We're worried. We're second guessing the decision to do this. We're exhausted. It's 6:30 in the morning. Peaches is a cranky toddler upset at the early wakeup call. Even though I can HEAR just fine, I find it somehow nearly impossible to listen to anything except the scratchy static of fear in my head.



I keep reminding ever nurse, doctor, hospital worker I can that our rooster has a lot of respiratory issues -- he needs special care while he's "under." I keep smiling at him and doing an impersonation of a calm, sure mommy. I am not breathing enough. Time is scrambled.



They give the rooster "happy juice" and oh how much I would like my own cup. (How very gladly would I have the whole shebang in his stead.) A beautiful doctor, Dr. R, with whom I've spoken on the phone several times comes to introduce himself. He is the anesthesiologist, and I've been told he's one of the three best in the country, but that seems like such an odd thing to calculate, and makes me question the whereabouts of the other two, and if maybe they could come along, too. The eye surgeon himself wrote the book on this procedure, and I'm thrilled to know it, but I believe that Dr. R holds the rooster's safety really in his hands. I wish I had baked something for him. I tell him we hear he's the best, that we are counting on this. He hears what I'm not saying as clearly as what I am, "You better take care of my baby. You must treat him as your own son." He finds ways to tell us that he will with his soulful smile and a voice like a grandma's quilt. In front of him, I weep just a bit, but not so much that the rooster sees it. I must guard the rooster and keep him confident. I must impress importance upon his doctors.



The juice kicks in! I am holding the rooster, because he is drunk and slurring now. When did he get so heavy? Dr. R says it's time to go, and he lifts the rooster from my arms. I am not in a good place.



"Durst!" Comic relief, courtesy of the rooster! He cracks himself up, leans toward Dr. R to practically nose kiss. "DURST!" The doctor laughs. "Durst?" he asks. The rooster cackles, "Dursty, dursty dursty, dursty durst!" Drunk. And they are gone, for one very long hour.



I didn't expect the rooster to remember surgery, but he had nightmares for a while afterward, and once said to me, "Dr. W sticks a needle in my eye mommy!" That was hard. Guilt is my nightmare. But clearly the rooster remembered the happy juice, too, and he uses "Durst" all the time. None of us know what it means to him, exactly, but his sister picked it up and uses it sometimes too.



Our rooster has a lot of mystery about him, and I recognize that I'm being told now that much of this mystery lies in a place of struggle, difference, dysfunction. Okay. And I know his language separates him from us in a way that makes me feel like's he's trapped where I can't always access. But whatever his struggles, I see durst as not such a bad coping mechanism, really.



Couldn't we all use some happy juice and a durst now and then?