So How are Things?

Lately, I can feel the need on the other end of the phone line, and it is a need I cannot meet.

Not from one person in particular, but from a few devoted, loving cheerleaders who call long distance to check on all of us here, I feel the need that goes unspoken. They need me to tell them that something - anything - got better here. They love me, love us, enough to call, to ask, to listen, many times over, and I understand their support fatigue. Believe me I do. And they have given us all so much, in so many ways, that when I feel their need, a part of me rises up, wanting to meet it. But the rest of me riots. Uh-uh. Nope. Sorry. This week, at least, no more needs can be met under this roof than the ones of those living under this roof. Very sorry.

Things are not getting better here, they are getting worse. It isn't what you want to hear, and it isn't what I want to say, but it is what it is, and it is survival through ugliness, moment by moment.

I want to say: Add yours to the pile of unmet needs, and forgive me.

I know that they do. I know that forgiveness comes as part of the package of anyone who braved calling our zoo in the first place. I am glad they still call, to be honest.

Maybe someday I'll be able to meet their need.
It would bring us all great joy.

Bumps

Well, today the teachers described the day as "Bumpy." I always appreciate this euphemism they use. It evokes, for me, the image of a rash, or knots forming on recently bumped heads, or sandpaper, and it really works better than the words I use when people ask me about the weekends. Those words I can't print here - this is a family show.

So, the school day was bumpy. Then, I heard my name paged a half hour prior to when I usually pick up the rooster from daycare. Rooster's AMAZING teacher needed to let me know that he melted down completely after knocking over a child's construction and then refusing to apologize. She wanted to know: Could I come?

Yes, bumpy. But once I picked up the rooster, I expected things to go downhill quickly. I figured picking up his sister would take things from bad to worse, and I braced for more.

We found Peaches playing with one of her new teachers in the gym, which was other unoccupied because after school activities don't begin for a week or so. Peaches and her buddy IF were racing around the empty space playing with balls. Rooster ran in, ready to steal away the cool new shiny soccer ball, but did I mention Peaches' new teacher is young, fit, smart, savvy, and rides a motorcycle? She immediately sensed the situation and managed to subtly tweak it to get the rooster and IF involved in what could look for all the world like a game of soccer. A game. Together. On the same team. Within 30 seconds she manipulated them into cooperation like a snake oil salesman. It was beautiful. I truly almost cried for all manner of reasons as my boy managed to just barely keep up with a child half his age but together kick the ball into the net. To. Geth. Er.

I walked up to hot new teacher and asked, "Do you have experience working with special needs kids?" And she said, while still managing six kids age 6 months to 4 1/2 with one other teacher, "Well, just a little working with a couple of high functioning autistic kids." I just pointed at the Rooster, who has barely met this teacher. She and I both knew as we watched him that he'd love to steal the ball, knock IF on his face, and run for the border, but she continued to pull the strings and work the magic of at least the appearance of kiddy cooperation, and no one got hurt or sad. She said, "Yeah, I kind of just started to get that vibe when you guys came in, I mean, like, I worked with boys who were super high functioning and all, but like the Rooster they weren't so good at... well, what is the word I'm looking for?"

I wanted to buy her presents and hug her for her generous way, for her skills and her comfort in the face of discomfort. She was still running the game, watching the babies, checking on the other teacher...

"Socialization?" I offered.

"Yes," she said. "Thanks. They just needed help with socialization, with playing well with other kids."

All of a sudden the rooster knocked down little IF in a calculated move to make it look like an accident. The teacher never missed a beat, "Wow, IF, great recovery, that was great. I think the rooster is going to pass you the ball now so you both can score! Great, you guys, run! Run! Run!" And they ran. And the ball. Went in. The goal. And the boys. Were happy. Both of them. For over a minute, no less.

I wasn't taking any chances. Desperate to leave on a high note for once, I grabbed my kids and dashed to our car, promising popsicles at home for everyone doing soooooooooo well in the gym.

Tired, they barely tried to kill each other in the car. They actually stared out their windows in silence once in a while, and no hostile words were exchanged until the last few blocks of the drive.

And so we survived the second day of school. With only one more day to go, some would call this a short week, but they would be wrong. It is not a short week. The way I see it, it is the bumpy start to a very long year.

Grace

Today, the first day of school, seemed like a day of grace.

In other words, by virtue of not going horribly, we consider it a success. We have a sliding scale here, and low standards.

Or, to get specific, this is what passes for a banner day for us (and I know without any doubt that we are unlikely to have more such days in our immediate future):

The blood tests the Rooster needed got him to school less than an hour late, and his father took him this time.
The third shadow assigned for fall actually showed up for the first day of school only half an hour late, but had a good excuse and seemed like she might really work out and actually have a commitment to showing up on a regular basis. Though she has to leave early every day this week.
The consultants coming to my important meeting for work showed up 35 minutes late and kept my bosses and me waiting awkwardly, but they had good ideas and showed real potential. I just don't think we'll be able to afford them.
Balancing my mommy job at school and my school job at school did not keep me from eating real food during a real lunch period. Someone even shared their fruit tart with me for dessert. So much for dieting.
The biting incident that happened in Rooster's class DIDN'T INVOLVE HIM. (For this, I did a happy dance.)
Peaches only cried a little when I left her in her classroom for her first ever day of real, big girl, half-day preschool.
No grownups cried. Not even me. Not even my coworkers.
I did not have to pull the car over on the way home to stop any bleeding or assaults in the back seat.
I did not overreact to my kids' poor behavior in any way that would have caused me to have to apologize to the children for losing my marbles.
I managed to make hypochondria jokes at my own expense over my current and recurrent health fears regarding tummy trouble, though I'm sure I'll be sleepless later tonight envisioning my imminent demise and worrying who will do the laundry when I'm gone.
After all the chores, I have enough left in me to blog.

You see? Banner day. I am thinking of sending out press releases. But you realize I'm in for an awful day tomorrow, don't you?

I'll keep you posted. I can already envision tomorrow's blog: The High Price You Pay after a Day of Grace

OUT

We got a babysitter.
For three hours!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Now, it might be my journalism background, but usually overuse of the exclamation point offends my sensibilities. Just like huge fonts in banner headlines, it must be justified.

Let me assure you, the punctuation is warranted.

We had. A. Terrible. Terrible. TERRIBLE weekend. Three days of terrible, of LABOR, thanks for nothing federal government. Today?

ROCK.

BOTTOM.

Very bad.

The brink.

You could sense the hopeless by NINE A.M. yesterday, with still a day to go. And we are morning people. By ten, I looked at my husband and said, "CALL THE SITTER. Text her. Tell her we'll take ANYTHING. We'll pay ANYTHING. Beg, if you must, but please CALL THE SITTER." He texted her to keep from frightening her with the combat noises in the background and negotiated enough to arrange for her to come today at 4 p.m. We quickly did the math and realized we had a long way to go, so we tried all our best tricks.

By today, I had such an upset stomach I considered going to the E.R.

But four finally came. In the last forty minutes, I managed to hide most of the evidence...er, clean up a little, make the kids' dinners, lay out their supplies, write the sitter a note, prepare Peaches to like the sitter who had only previously watched her brother alone, pack lunches for tomorrow, and take off the filthy clothes from spending a day with snarling beasts...er, my kids.

Four came, and so did the sitter. I warned her, I thanked her, I prepared her, I encouraged her, I told her she was saving our lives, not just our sanity. I promised to be home on time, seven sharp. I admitted we had no idea where we would be, just OUT, and I promised to have cell phone in hand at all times.

I kissed the snarling... I mean darling... children, and I ran.

The cell phone rang after an hour. It rang as we sat eating cheap comfort food that was too spicy for my still knotted, rotted, throbbing belly, and I knew when it rang who it would be. After all, most of our friends have all but given up on calling me. I knew who it would be, but still I had a shock in store...

The sitter called to say: he fell asleep. The rooster went in his room and put himself to bed. At six p.m. Right after biting his sister -- hard -- on her hip, he took a bath, got out, and cratered, completely unprompted.

She wanted to know: should she wake him? Good Lord, when the child who never slept for the first three years of his life VOLUNTARILY goes to sleep, I imagine he MUST BE TIRED, so I said thank you, thank you, no. Please let him sleep. I knew he'd wake before we returned, and then a little Melatonin would help him get even more rest.

At seven, we walked into some strangers' house. Looks like ours, but quieter. Subdued. Like ours, two kids live there, but these two clean smelling souls wearing matching pajamas spoke to us quietly before politely saying goodbye to the sitter.

The sitter, by the way, thinks I'm just a crazy drama queen. I actually love that. Otherwise no way on earth could I afford her.

It seems both children slept a little in our absence, and it had done them a world of good. (We tried so hard to get them to nap all day that we even drove them up and down the freeway -- forgive us, Earth -- in holiday weekend traffic in one of the most trafficky cities in America, with books on tape and everything short of a swinging pocket watch, to no avail.)

With three hours of normalcy, of being able to look one another in the eyes and be a couple, of being able to debrief and comfort one another, of being able to BREATHE, my husband and I also came back a bit restored.

At seven, we all settled down together for story time. The Rooster's scary voice had been replaced by the voice we cherish, and after Peaches showed us her bite booboo, everyone seemed mollified. We got through the nighttime routines without blood shed.

So what I'm telling you is, we made it through another day. I can read the words of wisdom in the comments and in my email and feel the welcome support and contemplate facing another day again tomorrow. I'm not looking for an open window...

Because WE GOT A SITTER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Now, you go get one too, you out there who needs one. Sell something on EBay if you have to, but get out for three hours. And keep passing open windows.

(Special loving gratitude to J and Friends of Rooster; you know who you are.)

Binge and Purge

I think I've alluded a few times to my new voracious reading of all the autism/special needs blogs I can find, but I have mentioned in the way one might mention, "Oh, I had a few snacks," when what I really should confess (in order to spur perhaps an intervention) is, "7-Eleven is empty because I inhaled every Dorito, bag of Whoppers, and Slim Jim in the place. And by the way, I'm craving more, so look out, Wawa." If special-needs-parenting blogs had caloric content, I'd need gastric bypass tomorrow.

It looks like this. Any time I am not at work, I have my husband's laptop, my kid's desktop, or my own iPhone open to Google Reader. There, I pull in about twenty-some blogs about autism (and about education). When I have read them all, I begin to read their blogrolls. When I have read all the blogs by the bloggers followed by the bloggers I follow, I Google for more.

What on earth is it I'm trying to find?

On the face of it, it's a mystery. After all, twenty-something blogs I read provide me a healthy diet of what I have needed, wanted, sought. I read the blogs of smart, caring, wise, intuitive moms who face daily challenges and serve as a good example to me. You'd think I could read them once, digest, feel satisfied, grow. I care deeply about so many kids I've never seen, and it's a huge blessing. I also gain tremendous friendship, camaraderie, community, and have no excuse for feeling lonely.

But beneath the surface, maybe I'm doing more than comfort binging?

Maybe I still think, okay, autism, but what else? What else are we dealing with in our Rooster? Okay, he's autistic, but he's also so freaking DARK. The darkness doesn't show up much in my reading. In fact, I read so much LIGHT. It can't just be that all parents BUT ME are able to see past the dark and write only about the goodness, can it? Am I that skewed? Maybe my blogmarathon means I'm trying to figure out if that is the situation, or maybe I'm trying to diagnose this darkness, or, forgive me if this offends you, cure it. The rooster is so angry all the time lately. He scares me. I scare me. What I see of me in him scares and depresses me. It's the rage. This rage. We all have bits of it in us, don't we? I have always thought of my bits as healthy bits, of expressions of not settling for less, of fuel I can use when I need to fight. I don't watch movies, don't like them, but a friend told me once that my occasional anger reminded him of the film Red Dawn, when one character says to another (something like): "You got a lot of hate in you, boy." And the ME character replies without missing a beat, "Keeps me warm." Maybe my own rage is more of a problem than I realize. Maybe it's bigger than I thought. But I'm more worried about his rage than mine. Lately the rooster is on fire. Just like when we first floated the autism question, I scoured the Internet for proof, found blogs, dove in, felt kind of at home. But the truth is, I never found the Rooster's rage described in the autism blogosphere. Doesn't mean he isn't autistic. Just means maybe there is more.

Yeah, I've started reading bipolar blogs, too.

I think soon my husband is going to snip our wireless router.

And, again, I don't like movies, but I remember bits of an old movie called What's Eating Gilbert Grape. I can't remember much about Gilbert except that he had special needs, but I can tell you this: I am feeling a lot like his mother these days. If I remember right, I think she ate so much and grew so large she couldn't leave her house. Sure I need to lose ten pounds, but I feel just like her on the inside lately. The way I remember it, Gilbert Grape's mom was looking for something she couldn't find.

Keeps me warm.

So Big

I screw up this special needs parenting thing a lot. Probably every day at least once. But I know for sure I am not a total failure. At least, I know my son feels my love sometimes, that something of it gets through, that he feels much more than just anger toward me. Here's how:

One night months ago, the rooster got sick late at night. He threw up. I got him clean and stripped his bed and gathered the things he needed, then we went to our leather sofa together. I propped him on top of my body so he could sleep almost sitting up, and I put a trash can and several bags on the nearby floor. Every time he felt sick, I helped him, held him, hugged him, whispered reassurances. "It's okay, rooster, it's okay. I'm here, I can help. You'll feel better soon. I love you. It's going to be all okay soon. Don't worry, baby, I've got you." We'd sleep an hour, then repeat, all night.

Lately, the rooster is disregulated much of the time. He contorts his face into hostile expressions and juts his neck toward us and snarls, "I'm ANGRY!" For a while he will be fine, especially if he's listening to a book, watching TV, building, or playing outside. But even then he can change his mood unexpectedly. He hits, pushes, pulls hair, pinches, spits, sometimes with no explanation, sometimes just after smiling and playing.

I admit sometimes I overreact, sometimes I cry, sometimes I get upset. This does NOT help, of course.

But after an episode, if the rooster seems to feel how much his rage shook me, he sometimes climbs on my lap to talk. No, he can't explain what just happened, and he doesn't apologize. He doesn't particularly want to talk about it. I can't always figure out what he wants to tell me. But sometimes it is in these moments that I know he feels my love, that some things are getting through. Sometimes what he says is this: "Remember I throwed up? Remember, mommy? Remember us on the sofa?" I say, "Yes, Roo, I remember." And sometimes he says, "You helped me throwed up, mommy. You did that." And I say yes, "Yes, Roo." And he puts his head on my chest.

We have this little routine we do, when the Rooster feels amenable. Peaches does it too. I say, "How much does mommy love you?" And the kids' line is: "So big!" Then I ask, "For how long?" They say, "Forever!" Finally, I ask, "Who loves you more than mommy does?" Every time they shout, "NOBODY!" it makes me smile.

Pre School

My husband and I try to remain equally present in both of our children's lives. We alternate turns at doctor's appointments, teachers meetings, and therapy sessions whenever work keeps us both from being there together, and we trade off with the kids, in our quest to keep things as balanced as we can.

I may not be all that great at balance, truth be told. (As if you couldn't tell.)

Earlier this week I found myself in a strange place -- at the orientation for Peaches' toddler program. Yes, my two-year-old starts school this coming Wednesday. I know I mention this a lot, but I work at the school my kids attend. I work there, and yet somehow it never really hit me that my daughter would officially become a student -- move from the faculty childcare center to an actual classroom -- until I found myself sitting across from her teachers, my friends, and listening with the other incoming parents to them talk about the curriculum. Curriculum. I heard them announce that the children need to come with backpacks and my mind temporarily spun into another orbit, sought to recalibrate for the sudden gravitational shift. I looked at my name tag for a moment, and it helped me catch my bearings, help me assimilate the knowledge that I sat in that meeting as Mother of Peaches, new student, and I began smiling thinking with some excitement of back to school shopping for a fancy new pink backpack.

Not long after I started to breathe normally again, the president of the parent association gave her welcome. This is where I lost all hope of balance. After describing her role as parent association president, she announced that she had once been the classmate of one of the toddler moms in the room, and that the two of them met for the first time when they were two years old. A dad in the room spoke up that he is an alum. Everyone began to get very Kumbaya on the topic of embarking on lifelong relationships, and how our kids would start together in the sand box, and then someday attend one another's weddings.

I couldn't believe it when I started to weep.

No, I didn't get swept away by the presentation or in the beauty of the journey Peaches would begin in a matter of days, though I know that is probably what I should have done. Instead, as I'm sure you can guess, my involuntary reaction had to do with what my rooster will miss. My rooster will not graduate from this school. We are lucky to have him there one more year until he is five and public school can offer him full day classrooms that can meet his special needs. The parents in his class and I will not sit next to each other at Winter Sings and Open Houses and Secondary Schools and reminisce about quickly time passed since our kids rode trikes and sang Wheels on the Bus together. And that isn't the end of the world. The rooster will find a right place somewhere, somehow, and form connections of his own - I have to believe that. And I can't let every typical event for Peaches turn into a grievathon for my rooster. But in that moment, what should have been Peaches' celebratory moment of entering school, I fell once again into the abyss of fear for what this year will bring for my Rooster, just one classroom away, but worlds apart. He will have outstanding teachers again this year, a rich curriculum, and a cool Diego backpack, he will be supported and nurtured and loved, but we are planning this year as the end of his journey at this school for typical students, not the beginning. He did not move on with the kids he started with last year, but is repeating the three-year-old program, a head taller than some of his new classmates, yet teased by them because he still wears diapers, and when this year ends, he will say goodbye to his current class, he will say goodbye to the school he shares with his sister and me as our second home. Right now I have no idea where he will go next, but what I hope for most of all is a place where he can learn how to be more comfortable in his own skin.

A colleague and friend sat next to me during orientation; she is also the mother of Peaches' friend and classmate. She looked at me in horror when my eyes welled up, and I'm sure she thought I'd become overly sentimental. "Are you crying?" she asked. I think I nodded. "The rooster," I whispered. She looked at me, got my meaning, and said, "But you need to be happy for Peaches."
This is very good advice. It's true. I know it. I am happy for Peaches. We bought that Tinkerbell backpack yesterday, and we celebrated, just Peaches and me.

But I also can't seem to help worrying about when she might leave her big brother behind, and how he will feel when he understands that we can't all be together anymore.