Wednesday, December 29, 2010
"With a heavy heart" the principal wrote that my boy's first grade teacher will not return after winter vacation. I should say, my boy's SECOND first grade teacher. His first teacher lasted about a month before she left for a job at a better school, where her kids attend. They did not replace the first teacher, they just took the whole class and added to another. In one fell swoop my kiddo lost the experienced and highly regarded teacher I'd begged the universe for, the classroom I'd helped him transition into, and the small class size. He landed in a different room on a different floor with an inexperienced young thing trying to handle 28 first graders, including some who had made life nightmarish for Roo in kindergarten. Now, she's gone too, and I called the principal urgently requesting contact with the third string before school resumes in what seems like a year and a half (or on January 10) after this lengthy winter break that helps nothing but the pathetic budget.
So, tomorrow my husband will take Rooster by the classroom to meet New Teacher #3. We worked for several hours today composing a letter to #3 about our expectations. It goes something like this:
Welcome, please try to last longer than Lee Press on Nails.
Our boy has autism, and we know more about him than you do.
We are sick of getting the run around.
We pay an ed therapist a lot of money because she knows what she is doing, and none of the teachers here seem to. We've brought her in for meetings with the other revolving cast of characters and explained how her strategies help our guy with academics, especially math. Use them. Like, on Monday, when you start. Use. The. Strategies. They aren't rocket science. They are simple and they work and you will use them.
The IEP says you need to help out. Read it. Help out. Do your job.
We will be in touch. Lots and lots of in touch. In your mail box. In your email. On your phone. In the homework folder. Often. One of us works right across the street, and can run fast, find you in heartbeat. Want us to go away? Gladly. Then stick around, use the strategies, read the IEP, help out, and do your job.
Our boy has autism, not the plague. He's sweet, cute, and he works his butt off.
Rooster's parents, the Bears
Does anyone have $46,000 I can borrow? Um, annually? I heard of the perfect private school for my boy, only it has one problem. Or make that 46,000 problems. But the public school he's in now has ten times that many, a half million problems, all for "free."
My kids sat in the playroom at a small table making crafts. Each one designed a colorful creature using materials from a kit sent by their adoring and generous grandma. I eavesdropped from the kitchen.
Peaches: I'm going to name this guy autism. He's a bad guy!
Rooster: Yeah, autism is a bad guy.
Peaches: Let's punch him in the nose!
Rooster: (Laughing) Yeah, let's beat up autism!
Peaches: Kick him in the face!
Where on earth do they get this stuff?
I interject from the kitchen: Kids, you know people who have autism are not bad, right?
Peaches: We KNOW that. Rooster has autism. But autism is a bad guy!
Rooster: We're going to kick him in the face.
Me: Well, you don't have to like autism. But I don't hate autism. Because I know a lot of people with autism and I really like them.
Peaches: Well, but autism is not good. I mean, the people are good, but not the autism.
Me: Maybe. But punching something you don't like doesn't seem like a good idea. I don't like "beating up" talk. I don't think you should kick people in the face!
Rooster: It's funny!
My husband gets in on the conversation: You know, kids, autism means that your brain works differently from how most people think. That's all.
Peaches: This (holds up creature) is autism, daddy! He's a bad guy so we're going to make another guy who punches him.
Husband: Do you know any people who have autism?
Peaches: Yes! Rooster does. Come on, Rooster, let's play with these guys!
Rooster: Yeah! I want to beat up autism! Kick him in the face!
Friday, December 24, 2010
I did not back down one centimeter and gave him the same reminders all 600 times. (Not looking for opinions on that one, just saying.) When he threw his shoes in the trash, I made him take them out, apologize, and listen to my speech about appreciation, money, etc...
Cut to this evening. Although I am Jewish and my kids and I light candles, we also have a Hanukah bush and will open presents tomorrow morning in our play room. (Guilt, guilt, guilt.) So I suggested maybe we already have too much stuff and maybe we should do a quick sort and organize. Peach says, "What do we do to organize?" So I suggest we look through our stuff and decide what to keep, what to throw out, and what to give to other people who might need or want the stuff we aren't using.
Rooster appeared engaged in playing with toys. Without missing a beat, though, he looks me right in the eye and says very calmly, "I have some stinky shoes I want to give somebody who wants them. They can HAVE them."
I don't know if that READS funny at all, if you can picture the scene or you had to be there, but I can tell you it took me 10 minutes to breathe again because I laughed so hard it was silent, and the kids looked worried I might keel over.
So, autism. Maybe it causes some perseveration and tantrums here at casa del Rooster. Maybe it gives me worries that keep me up at night. But I think we spit in its eye tonight. Go, Rooster. Go wit, go conversation, go eye contact, go FUNNY, go joint attention, go Rooster, go. Happy New Year!
Thursday, December 9, 2010
Saturday, December 4, 2010
Saturday, November 20, 2010
Sunday, November 7, 2010
Tuesday, November 2, 2010
Tuesday, October 26, 2010
Sunday, October 24, 2010
Tuesday, October 19, 2010
I have not, however, been in Metropolis waiting for Superman. We all know I am not that naive. He ain't comin'.
Fortunately, though, I did get a chance to go to the documentary with my blogger friend, and as a special needs Mama, I just have to state the obvious: I don't know anyone in this community who believes Superman is coming to make schools the places that they should be to properly include all kids with special needs. Not Superman, not the government, not Oprah, not a miracle.
As a teacher, I say to you: Our public schools are broken. Our children are not. Our system is flawed, but our children are beautiful. We must do what we can for our kids, despite the fact that it's overwhelming, that there is no map, no clear destination. As a teacher I say to you that our children are more than just our future. They are right now. They need us. As a teacher, as a mother, as a voter, I am not sure what to do, but "nothing" is not going to cut it.
Now, in case you've recently been under kryptonite, Waiting for "Superman" is Davis Guggenheim's look at our public school system and how, among other things, a handful of heartbreaking families struggle to escape sure catastrophe (their local schools) by hoping to win the lottery that is the charter system. Having taught in public and private schools, and having observed charters, I wanted to see this film once I heard the buzz. I heard words like "depressing." I heard assessments like "beating up teachers." I heard "indictment of unions." I heard, "Public schools suck." I have a child in public school. I have a child in private school. I have an interest in them attending a nearby charter school in the future. I visited the first KIPP classroom in Texas while serving in Teach for America. I needed to see this film.
One of the film's protagonists explains his own realization that no Superman would come rescue the disaster public schools have become, and I believe that is true. The overall situation is dire, and it is worse than dire overall for kids who have physical, emotional, or developmental challenges.
But no film is perfect. Not even documentaries are completely objective. You can't tell the whole shebang of education in the length of a feature film. I appreciated this film and what it shared, I think it's something you should watch and discuss, but it is not an A to Z picture.
As lousy as the conditions are in schools today, as horrifying as the system is that gets me writing late night letters to the White House on their web site, what school really boils down to on a daily basis for most children is teachers. Good teachers make for good learning. I know good teachers. They aren't all in private schools. They aren't all in charter schools. There are teachers who are heroes. For many children, a teacher is as close as they will ever come to Superman. I don't want you to see this movie and think all teachers contribute negatively to the tragically unheroic system. I don't want anyone to believe teachers got us into this mess or refuse to get us out.
And the beautiful, heroic kids in this film have families that have their backs. I am deeply thankful for that. But that is not the story in every household. Want to know what systems are as torn, twisted, mangled and maimed as the school system? (No, I'm not talking about health care, but that was a good guess.) Families. Let's say Education Superman made schools stronger, healthier, cleaner, safer, more resourced, and well staffed. So then all our kids would get good educations, go to college, thrive? Even the ones who live with challenges like homelessness, domestic violence, illness, substance abuse, neglect? We'd need Family Superman, too, wouldn't we?
Schools have increasingly hard jobs in increasingly hard and complicated times. I don't have any answers, but I absolutely plan to keep asking questions. Why is the public school system broken? Why does government get it wrong over and over and over? How can we support teachers who make a difference? Where can we find the leadership we need? And why do we consistently fail our most vulnerable members of society? Are unions really the problem? Are charter schools really the answer? What about kids with special needs?
We don't need to find a Superman or Wonderwoman. We need a nation of them.
Saturday, September 25, 2010
Jillsmo, you took the UG out of my UGLY week, giving me a blog award that I don't deserve but will gladly accept because I never win anything and a girl needs a little something when her week smelled like the carpet in the YMCA locker room.
"And, now, I will do my duty as award recipient and follow the rules, which are, as follows:"
- Thank and link back to the person who gave you the award.
- Share 7 things about yourself.
- Pass the award along to 15 other bloggers who you recently discovered and think are fabulous.
- Contact the bloggers you chose and let them know about the award.
Sunday, September 19, 2010
You might ask me, "How did it go?" But there is no simple answer. There are, in fact, many answers. Ever since the word autism came into our lives, I have as many perspectives on events like birthday parties as I do hats to wear. It makes me feel a little dizzy and schizophrenic. I see each birthday party with the eyes a mother of two, a teacher, an OT, a behaviorist, of just plain old anxious me.
The birthday party was:
Fine. The birthday girl's family is adorable, and they have a lovely home. I managed the expected and unexpected obstacles with finesse, other kids melted down as much or more than mine, I had some adult conversations, some people barely noticed us, I remembered an alternative treat for the boy that pleased him, and no one got hurt. Wheew. I'm tired, but all-in-all, not a bad day...
Disappointing. It reminded me that no matter how far we've come, the other kids have come farther, and no matter how hard we work, we have so much more to do. My boy pushed a kid, called a child a "loser," flipped out when the face painter closed up shop before he got his painted, and screamed at our hosts, "I WANT A GOODY BAG! NOW!!!" My daughter lost her shoes, stuffed herself full of sugar, and instigated an argument with her brother the minute we got in the car to head home. Inside the goody bags? Contraband. Uh-oh... who knows what was in that candy Roo gobbled up before I could stop him, but it said, "Made in China" on the bag, and nothing else.
Terrific. I am so grateful. I know too many people for whom going to a birthday party is impossible or unthinkable. Every time I read the news, my blog reader, or Hopeful Parents, the shame I feel over my self-pity grows and grows. We had a beautiful day to be together and be with friends. Many of the people there offered us support and understanding, and I feel so appreciative.
Therapeutic. Roo could bounce in the bounce house, swing in the play room swinging chair, and pet animals at the petting zoo. A ROOSTER walked right up to him, so purposefully, I kid you not! Hey, with that kind of therapy, we didn't even feel the need to drive to horseback riding therapy afterwards... a good thing with temperatures in the 90s.
Just another day in the life of the Rooster's family. Ups, downs, smiles, frowns, screaming, hugging, fighting, kissing, trying, learning, teaching, working, growing, struggling,wondering, lather-rinse-repeating.
Saturday, September 18, 2010
The love, I assure you, is unstoppable. The fun, though, as I explain to Peaches, is much bigger when all our behavior is good.
And where does she get these questions, questions that pile on me lately about where babies come from, why people go to jail, what happens after death... I have typed only one sentence, that first one at the top of this post, so far, and realize I've never been able to blog when my kids are awake, but my night's are filled with schoolwork (theirs AND mine), and yet I hate to neglect this place where I come for my sanity and catharsis.
The phone rings. My husband, at Children's Hospital with our six-year old son who has autism, tells me I handed him the wrong prescription this morning on his way out the door and he's hoping I can send a scan or photo of the one he needs for our boy's blood draw, ASAP. I set aside my computer, scramble for the camera, the script, the card reader... How did people survive without ubiquitous computing? In 5 minutes, thanks to numerous gadgets and some of my husband's charm, my husband has things underway at the hospital to check up on my son's blood...
Peaches climbs from the tub, drips her way through the house, asks to be held like a newborn, helps me make a cheer up sign for her brother, refuses to sit more than six inches from me as she devours the opportunity for undivided attention.
The boys return, and before the key unlocks the front door my boy makes it clear that he NEEDS to bake a pie. URGENTLY. He has had pie on the brain for days, so I prepared last night, stealing away during ABA to stock up on GFCF ingredients from two separate markets. Sadly, real GFCF "pie" is beyond my patience and skills as well as the inventory of both markets, but I know he will settle for "crumble." With both kids as "helpers," we manage to whip up apple crumble in about an hour, leaving the kitchen sorely worse for the wear. While it bakes, we eat carrots, sandwiches, chili, lemonade. Finally, the timer dings. A boy demands a melted marshmallow on his "pie," and a Peach opts for ice cream. In the end, it's really only these toppings they like. The "pie," or crumble, tastes too healthy for their liking. I end up eating more than my share. They tear through the house grabbing toys, wearing my very favorite blanket in the entire world over their heads as they play ghost, building structures on the coffee table, laughing, arguing, goofing around.
It's barely afternoon. The house is a wreck. I realize no one brushed their teeth this morning. The TO DO list stretches long and foreboding... I pick up my netbook, with a blind eye to all else and a firm refusal to worry about blood panel results, and resume writing this, the formless blog post in front of you right now.
And with tremendous trepidation I confess to you, brazenly, that I feel happy.
This is how one family with autism rolls.
Tuesday, September 14, 2010
Well, at least, I read something really, really, really good. Maybe the world just paused a moment. But for me it felt big.
Really I should talk about worlds, not world. My work world -- in which I am working on an administrative credential -- felt like it collided with my home world, in which I am the mama (read: fierce advocate) of two children, and one has autism.
Usually, I do not care much for my worlds colliding. I have several unwritten posts littering my head and heart about how those collisions shake me. But today, I read a blog by an educator I admire, a blogger in my Personal Learning Network. I admire this man, a principal, and recently decided to borrow one of his ideas. I appreciate the way his professional blogs get personal, give glimpses into the goodness of his character. The idea I contacted him about, which he shares willingly, has to do with having an Identity Day at school to celebrate the identities of everyone. Everyone. Yeah, I know, right? So I am a fan.
Today I opened his blog and found something that you need to read. I don't care what you do for a living. I don't care what kinds of kids you have. I don't care what world you live in, because his blog should be required reading for voters, and anyone else with a pulse. It shows simple beauty, it shows leadership. It's a world with which I can identify. Enough about me. Please, right now, go meet George, Principal of Change.
Tuesday, September 7, 2010
Saturday, September 4, 2010
When you meet my son, the Rooster, you might like him and you might not. Fair enough, to each his own. But if you decide you don't like him because you make some snap decision devoid of sensitivity and full of assumptions before you even give him half a chance, and then you make no effort to keep your opinions to yourself, then I would say turnabout is fair play; Here is why we won't like you, either:
Clearly, you aren't very bright.
You have bad taste.
You are impatient, and you lack style.
You know nothing about autism, learning differences, or, well, people. Learn a little something, why don't you.
You are funny looking.
You are arrogant.
You hurt our feelings.
You are a dime a dozen; you people must be like bunnies or something. Borrrrring!
We are way too cool for you.
You have NO sense of humor.
And, as my high school buddy used to say back in the South, "We ain't got no time for you!"
I'm sorry, but my Rooster is undeniably one highly likable fella, if only you give him a chance. And you can be sure I can see your bad attitude and raise you, too, if you're talking about my baby.
Thursday, September 2, 2010
I have friends I miss, friends I am worried about, and I want to call them. I'm sick, stuffy, sneezing, coughing, and not calling anyone. My husband is out of town, school has started, technical difficulties multiply like fruit flies.
So I do what I do in the crazy spaces. I grab the journals.
Do you have these journals? Of when your babies came into the world? I wrote letters to my babies for several years. I wrote to them and told them all the littte details from our family time. I quit around the time of the autism diagnosis. I quit because instead of writing journals, I began to obsess on reading everything I had written. It consumed me for a time. I was hunting my love letters to my son for clues as to why, when, and how autism happened to us. I grieved over the entries' references to torticollis, sleeplessness, colic, immunizations (not that I think they caused my son's autism), grumpiness, feeling different, doctors, tests, worry and anxiety, the feeling even when my son was 8 weeks old that things just were not right. I scoured the journals and indicted myself for not figuring things out sooner, not doing more, not being a better mother.
That is not why I turn to those journals now. Two and a half year post diagnosis, I find myself in a new place with autism and with parenting, and with both my children.
I am coming to a place of acceptance that I am all done having babies. Now that Peaches is wearing 4T, I realize soon there will be no more "Ts" in my clothes shopping soon. My baby girl practically runs our household. My boy starts first grade soon. I am 39. Our family is complete. We've given away everything baby. I turn to those journals to remember the joyful times of babies in the house. I turn the pages to bring back the smell of baby, the coos and hiccups I wrote about with such joy in the good moments, to remember that I did take time to celebrate, to wallow in the happy moments.
One coworker asked me over lunch about these crazy weeks of getting back to school, juggling both kids' crazy schedules and needs, and behaviors. While we all laughed at my ridiculous tales of dramas and chaos, a woman chimed in: "Yeah, well I remember you about a decade ago doing lunch duty going on about if only you met Mr. Right, and all you wanted was to find a great husband, so...." And I remember that too. And I don't dispute, amid all my kvetching and kvelling, that all my wishes came true. One the one hand, I have everything I ever wanted. On the other, I still find things plenty challenging. I am never going to be the person who is all that sorry for complaining -- it's part of my identity! it's deity insurance! -- but I fully recognize that some day down the line I will yearn for these very days that flatten me.
As I flip through my old journals now, I treasure the references to cuddling, to firsts, to celebrations. I love that I chronicled who visited us, what my kids wore, how we laughed. I don't keep those journals any more, but I do have this blog. When I completed my first year of blogging, I found myself rereading my first posts, again like a detective, looking for evidence: were we or were we not making progress? How much? But some day I will be rereading these posts to revel in when my children still said ridiculously funny things I could put in Notable and Quotables, when they were first starting school, when they were still wearing sizes with letters in them.
My husband has an expression: Enjoy your vigors. I was thinking of that when I decided not to clean the house tonight, not to fill out paperwork, but to blog. This is where I'm enjoying the vigors, not of my youth, but the youth of my kids, right now.
In that spirit, I am leaving this is a journal letter that my future self can enjoy...
Dear Rooster and Peaches,
The days are getting shorter again, and even though the nights still feel hot often, you can feel some fall in every morning. You wake up sweetly lately, Roo's footsteps quickly sounding his rush to the bathroom before piling in our bed, Peaches asking for breakfast and attention. I love the way you are starting to do such big things independently: the way you brush your own teeth, pick out our own outfits. I love how you both ask more and more questions. Today Peaches asked, "Was is better a long time ago in the old days, or is it better now?" I love how Rooster is trying to control impulses, and feels sorry when he makes a bad choice. Roo, you asked me yesterday, "I'm still a good guy, right mommy? I'm not naughty?" I assured you that even when you make a naughty choice, you are our sweet and good boy, and that we love you a million percent. You love hearing how much we love you -- so Big!! -- and you love our kisses. You love Super Why and you are proud of learning to read. Peaches, you love attention, back scratches, music, and collecting. Mostly, you love attention. You are all about princesses and pink. You are proud and how quickly you learn, and you are good at numbers.
We had a decent summer, and I have some back to school anxiety, but I am very proud of both my boosties, and I am so happy to be your mom.
Monday, August 30, 2010
Sunday, August 29, 2010
What a strange week it was while she was away, and how revealing.
When our boy has our undivided attention, he charms us silly. Without a peer around, he has no conflicts. When he doesn't have to share, he has amazing manners, all pleases and thankfulness. When he's getting the things he wants, the word "no" disappears from his vocabulary. When his sister goes away, he speaks of her with tenderness and longing. Wow.
When his sister returns, of course, some things go back as they always were, but even that brings surprises. How is it that I am still shocked that my son has autism? How does it still catch me off guard? Because once his NT sister, two years younger, shows up at is side, a contrast is inescapable, especially as we hear how Peaches spent the week doting lovingly on her baby cousin (two years her junior). And with a peer around, our boy has conflicts - oh boy does he. He finds sharing a huge challenge. He screams "NO!" Compliance evaporates. He says "mean words."
More than anything, I am happy to have everyone together under one roof again, and I'm so grateful to my inlaws for hosting our littlest for a week, but I am also processing all this transition.
First grade starts in two weeks and I'm scared.
Sunday, August 22, 2010
We have had some firsts in these parts. Right now, my little girl is away from home for the first time. She and her grandparents are taking a trip a few hours away to visit family for most of the week. We left her today, and as I type, I am waiting to hear that they arrived at my brother-in-law's house safe and sound after their four hour journey. That waiting thing can be blamed on the poor quality of this post... I'm half here, writing for distraction.
I am also trying to distract myself from my stress of being a student again. Six weeks ago I started a one-year program to earn another credential, and I turned in a big paper today, with another big paper due on Friday. These are very rigorous courses and I love them yet find myself counting down each week; 46 more to go. All the writing for my credential can be blamed for the scarcity of my posts these days.
This past week, my husband took the kids to his parents' house for several days while I got some of my work done. It was an unusual week for me, for us, but a good one. My husband's parents are wonderful grandparents, and they all had a good time hanging out together, swimming and playing, and I cranked out some serious business. When I went to join them yesterday, Rooster had learned a bit more "swimming" (though he still wears his floaties) and I noticed some better impulse control, some leaps in language. All these firsts can be blamed for me feeling a little more emotional today, a little mushy and sentimental.
So I'm pointing my finger and placing blame every which way, but the real truth is: We're going back to school, and all the transitions freak me out. I feel like I'm falling down the rabbit hole.
Just saved myself $150 and an hour of therapy. Whew.
Sunday, August 8, 2010
Thursday, August 5, 2010
No, I don't mind being asked -- I appreciate concern about Roo -- but I don't know what to say, exactly, either.
We have many people who micro-"ist" our boy. By that I mean that we have people who deal with his this issue or his that therapy... they touch his trunk, his tusks... but I don't know how many really deal with the whole elephant in the room of where our journey might take us. Then again, did my parents know when I was six what my future held? Do any parents have a prognosis for the future of their kids? You have kids, then you hold on for dear life... you wait and see where the journey takes you, I guess. Sometimes I wish I had a crystal ball...
Some of the ists in our life have tried to prepare us for the possibility of thinking about group homes one day, while others talk like they assume Roo is going to find some special Bill Gates or Steven Spielberg talent and take over some sliver of the world. And then there are a lot people who fall somewhere in between...
Lately, Roo has taken to asking me, "after first grade, THEN can I go to college?" I overthought this perseveration for quite a while before I smacked my forehead with my palm and realized that when my boy gets stuck on something, a movie or a book can almost always be blamed. You probably got it faster than I did, since I confessed to you last post that I am so not a movie girl, but Toy Story 3 is the origin for the college obsession. (I love when my boy asks, "When I go to college, can I come home and watch TV? Soon can I go to college?")
Well, we might not be ready for college come fall, but there are some big developments and a graduation of sorts underway. First, our boy is VERY GRADUALLY, and haltingly, and with lots and lots of support, reading his short little Open Court first grade books. Let's hear it for his AMAZING tutor, Ms. S. Wow, it's hard, and it's wonderful. I weep a lot. Roo gets exhausted a lot. We plod forward. Twice a week, he sweats and struggles and earns his giant sticker for tapping and blending, for sounding out, "See Tim spin." Second, the talks have begun to plan a graduation from ABA in-home services. Wheeeewwww. No, his behavior isn't perfect, but we might have squeezed as much juice as we can from this lemon, so to speak.By Thanksgiving, we should have 10 hours a week freed up, after almost two years of "helpers" and programs. Next up, social skills classes.
Math still mystifies our boy in a way that is beyond troubling. Numbers seem to have no significance to him. His four year old sister often tries to whisper the answer to the math questions we offer him or otherwise throw him a hint as subtly as, oh, a great big red hickey. Today I gave him a little word problem to ask him to add two plus two, and he goes, "Three! Six? Umm, maybe 10? Can I have a snack? WHAT?!" Meanwhile Peaches is all but thrusting her four fingers in his eyeballs.
At camp, the Roo has a shadow, and she tells us he has been learning to play pickle and kick ball, do hopscotch, make Fortune Tellers (aka cootie catchers), and step dance, among other things. A few days I have needed to pick him up later than she can stay, and he has managed the last half hour of the day okay without her there, just hanging out with other kids his age.
Last weekend, we discovered a place in the area that does FREE therapeutic horseback riding, and while Roo isn't exactly The Boy Who Loved Horses, he did pretty fantastic riding on Mark, the sweet white horse, with the help of three expert volunteers. After, we got to swim in the pool at the ranch, and while neither of my kids can swim yet, it's one area that our little guy is making progress faster than his sister. He still wears his floaties, but he's holding his breath and going under, blowing bubbles, practicing strokes and kicks a bit... he's not afraid of the deep water, and he's making progress.
I have no idea what my son's long-term anything is, and I'm not going to even try to predict tomorrow. The words tomorrow and yesterday still confound him, and he has a poor sense of time. But I am very proud of him, and I love watching him grow, change. I think about his "developmental disorder," but more I think about how far he has come. A year ago, who would have predicted my boy would be sitting straight and tall as instructed as he takes a horseback ride, reading to me proudly about spinning Tim, wanting to master hopscotch, holding his breath underwater?
The long term prognosis for the rooster is that his mama is going to love him.
Sunday, July 25, 2010
I have read many books about autism. I confess that sometimes I've trudged and sometimes I've skimmed the most painful ones, and sometimes I've had to read through a curtain of tears. Since the Rooster's diagnosis, though, I have not watched any film depictions of autism. Of course, there aren't that many, but I've also been conscious of my choice.
My husband, on the other hand, has an entirely different relationship with film, and he works in the field. He has watched Apocalypse Now many times, and tried his best to foist it on me when we were dating, yet somehow we managed to stay together and get married anyway! He worked on the movie Saving Private Ryan, and he's hard to choke up in front of a screen. However, last week he came home from work not quite himself -- not quite as mellow and chill as is his natural, beautiful, even keel way. Of course, I probed. Turns out for work he'd needed to screen Rain Man a few times. "You know," he told me, "I could see some of our boy watching Dustin Hoffman, and it hurt to see." My husband is steeped in optimism, and he has tremendous faith in our boy and his potential. He said he didn't look at the movie and fear for Rooster that he might face the same particular set of challenges of the character or the real man who inspired the film. It's not about that, and it's not about judging the character or the movie's inspiration. Instead, he ached, I believe, for the realness of the story, and, he told me that he grieved, "for the what might have been, for anyone." Later that night, before bed, he brought it up again a different way. "Sometimes I think we forget that we always carry it with us, it's always there every day, you know? You think you aren't thinking about it and then you watch Rain Man and you find yourself shocked that you want to cry, but it's always a part of us underneath the surface." I guess that's why I don't watch many movies at all ... I have plenty of over-exuberant empathy in a day without adding that, I have too many things, not just autism, just beneath the surface that I carry with me. I'm glad J doesn't carry around as much as I do.
I think of Apocalypse Now and Saving Private Ryan and Schindler's List and Anne Frank as tragedies. I don't think that way of autism. I think of it as one kind of reality, which has countless different faces, different experiences. Would I eradicate autism if I could? I am sure some people will be offended if I say I would be okay with that. But autism, which really has been sucky in my overall experience, has undeniably given us gifts as well, and our boy is a joy to know, so I do not think of his autism as a tragedy.
Rain Man might just be a movie, but autism is a reality, and that's why I think J felt so moved.
Friday, July 23, 2010
Not taking the time to write this post would cause me guilt.
When stuck between a rock and a hard place, I write.
I faced a similar conundrum today. After two days of being part of a jury selection process, and two days of child care DRAMA that resulted in missing ABA for the Rooster both days, I found myself in the final minutes of court. It was after 4. The natives were restless. The prosecutor and defense attorney accepted the jury, and I had not been among the 12, though I was among those in the box. The 7-business-day trial would be able to start on Monday once an alternate was in place. The judge met counsel for a fast side bar, came back, announced juror 31 could be the alternate and we could all go home. As juror 31, I'd been dreading a moment such as this, and finally piped up in an 11th hour like I was in a movie or something. "Wait! Your honor, may I say something? I already explained this in the jury room and they told me to tell it to you should the need arise. My son is six and he has autism. The state provides him with therapy he needs. It's called ABA. And I have to be there to be part of it. If I am on jury duty, he will not be able to have his therapy, and he needs it."
The judge called the attornies to sidebar again. He returned, gruffly said, "Juror 31 is excused." I paused, so he said it more firmly again. "You are EXCUSED, juror 31."
All day I'd been imagining being excused. I imagined trying to resist smiling, trying to look serious as I exited. I'd watched others leave celebrating and considered that tacky and disrespectful. Instead, I slowly drooped out of the courtroom.
Not taking the time to do jury duty made me feel guilty.
Taking the time to do jury duty would have made me feel guilty.
I didn't expect to feel deflated by being excused. Quickly I did a gut check: I didn't like the idea I was "playing the autism card." Everything I said was true, but should autism get me something other people want? Or get me out of something other people don't want to do?
Mostly I felt confused.
Why did I cry in the courthouse alcove? Was it just this guilt? Was I ashamed? Embarrassed? Why did it make me so sad that in our group of about 20 people, another woman leaned over to me and said, "My son is ten and he also has autism." Why did it make me so emotional that another potential juror being excused as well grabbed me and hugged me in the badge-scanning line?
Why did I need to call my husband from the parking garage to unload it all to him before I could manage to drive? Why did my husband tell me he felt a similar feeling, to a lesser degree, when he did the exact same thing in a courtroom a few months ago?
We don't particularly WANT to do jury duty, but at the same time we wish we didn't have a free pass for such a challenging reason. It's hard to lay bare our issues in a forum like a courtroom. It's hard to say that we can't keep up with some responsibilities that others can because our plates are too full.
I told the nice stranger who hugged me that my boy is doing okay, he just needs the structure and support of his therapies. I didn't want her to think we were facing bigger challenges than we are; I didn't want to exaggerate, and I wanted to let her know I am proud of my son. "He's going to be okay," I said.
"I am sure he already IS okay," she told me. "He has a mother who works hard to take care of him. He is your boy. He is okay. He is okay." Another woman had appeared quietly from nowhere. "Things can always be worse," she said. "Everyone has challenges. They come at different times for everyone. Don't feel bad."
I couldn't keep my eyes dry.
I have more questions than answers about why my day made me so emotional. The important things, though, that I take away are these:
Maybe I shouldn't have taken the time from my homework to write this muddled post, but I feel better now that I did.
Maybe I shouldn't have escaped my civic obligation to maintain the Rooster's support programs, but now that I've reflected on it, I know that I'm glad I did.
I hope one day doing jury duty will be no big deal for our family.
I like to imagine Rooster serving one day, too.
Wednesday, July 21, 2010
The better that my son, my Rooster, does in overcoming behavior challenges associated with autism, the worse my neurotypical daughter behaves. For her, two was not terrible. It was the last time I remember thinking of her overall, general behavior as darling, delicious, delightful. She has plenty of good in her, but lately her choices? Rotten. Three was a year of tantrums and "no." Four is breaking me at the knees. On her good days? Roo has setbacks.
And that, friends, is what passes for "balance" at Rooster Calls.
Friday, July 16, 2010
Notable and Quotable:
Roo: When I go to college, can I come home and watch TV?
Peach: Daddy, a boy in my class stuck something up his nose and couldn't get it out.
Daddy: Did a doctor have to get it out with an instrument?
Peach: Yes. Was it a tambourine?
Me: Who did you play with today at camp?
Roo: Miss Jessica.
Me: Roo, you should try to play more with the kids.
Roo: I never thought of that!
Roo: Mommy, after first grade, THEN can I go to college?
Friday, July 9, 2010
On the other hand, I will guiltily admit that, when I am with my kids, I miss some frivolous things. I am not talking about necessary things, like sleep, that I miss with a deep and abiding yearning, but about silly indulgences. I know this makes me seem selfish and ungrateful, but it's honest. I miss watching the news. Sadly, the news is too R Rated these days to watch around G ears. I miss trying out new recipes in the kitchen. J and I used to have romantic cooking dates, try sophisticated new meals or complicated Sunday pancakes from scratch. Now, we lack the time, the space and the energy, and our kids would never eat the dishes we used to enjoy concocting.
I really miss talking on the phone. I really miss that a lot lately.
My kids get nutty when I talk on the phone, competing for my attention, and I can't say the things I want or need to with them around, and they interrupt constantly, but one sad obstacle to having conversations is that I no longer have many people I can call. Many of my dear friends and much of my family live on the East Coast, and though they love me, I can't in good conscience ring them up after 7 my time, when they are heading do bed. In my own city, I have a few very close friends. I can call them. They are beautiful and wonderful, and they share and listen. They have heard, mostly face to face, all about the BIG THINGS going on with me, some to the point I feel ashamed I haven't coughed up a copay or something. For this reason, I can't always get myself to call them. I can't figure out what to say sometimes that is different from what I say every time.
I remember talking on the phone with a nostalgia that may be misguided and just plain wrong, but I miss CHATTING. I miss exchanging witticisms. I miss joking around. I miss banter, friendly sarcasm, even little bits of celebrity gossip once in a while.
I miss talking about what my friends and I saw on TV and what we cooked this weekend.
But these are small things to miss. They are nothing like being an airplane ride away and longing for two little arms wrapped around my neck.
Still, I am wondering, what small things do you miss?
Monday, July 5, 2010
People ask me how Peaches is doing, and I say, "Fine!" Unless they ask for details, I leave it at that.
People ask me how Rooster is doing, and for some reason I find myself analyzing numerous variables quickly in my head, then, less quickly, rambling on and on...
I want to learn to just say, "Fine!" For one thing, that IS the social convention. People expect to hear, "fine." For another, I do think my boy is fine. He is quite a fine person and quite a fine son.
What I find myself saying goes something like this:
"Okay, I guess. I'm never really sure. I mean, I think he's making good progress with some things, but other things sometimes seem to regress. And he never catches up, of course, but he's starting to make some strides in academics... well, in reading anyway, but math is another story... that has been really, really, really hard... and his health has been mostly better overall really...I just wish that..."
See? Queen of TMI.
I think maybe when people ask me how my son is, I hear, "How are you dealing with autism?" I want to remember:
- not everything is about autism
- not everybody really wants to know
- not everything is about me
- less is more
Next time you see me, ask me how my Rooster is; I want to practice replying with a four-letter f-word that is more than socially acceptable -- it's socially expected.
Saturday, July 3, 2010
As a journalism major, I embraced writing for any newspaper section except sports, due to my complete sports ignorance, and opinion, due to my allergy to first person - though I had, of course, no shortage of opinions.
Friends and colleagues sometimes envied how quickly I could crank out a feature or a theater review, but when I became managing editor my senior year, I had to write every third house editorial, and I dreaded it. I procrastinated, and I leaned heavily on the generous support of our Opinion editor, Grant. I never kept those house edits in my clip file, because they never felt like mine, and I never felt comfortable with my voice.
I've kept a journal since I could hold a pen, but even then avoided "I."
So why is it that this blog is where "I" can be?
I've been thinking about this because my work and related studies compel me to blog, and I find myself once again feeling reluctant, shy, uninspired. What's the big deal that I have to blog about work? I blog all the time? But this blog, this is not work. And I don't feel like I write it; it writes itself. This blog is a gift a give myself. It's how I vent, breathe, share, bond.
I'm going to have to figure out how to blog in another element, and I am not sure how. The one thing I do know, though -- I don't want that blogging to crowd out this one. I have no intention of giving up my home here in the blogosphere where "I" live.
Thursday, June 24, 2010
Tomorrow? Another obstacle course.
Beyond that: Is Rooster going to be okay? Can someone just reassure me?
Can someone tell me that even if tomorrow looks and stinks like today, that beyond that are brighter days?
You don't have to believe it; I just want you to make me believe it. Sometimes I do. Today was not that day.
Wednesday, June 23, 2010
We scramble to make arrangements. We quilt together child care plans. We hand off the baton in the knick of time to get Roo off in this direction, Peaches in the other, before we go to work. J gave me this one, my favorite: "We're barely laying the track before we're rolling over it."
Somehow, through creativity and determination, amazing babysitters (of which we now have SEVEN in our arsenal!!!), kind friends, and generous family, we're juggling 3 summer camps, educational therapy, new ABA schedule and new -ists, business trips for us both, and careers. We are bleeding child care money at heart-stopping speed, but seeing our kids benefit makes us believe we are investing as wisely as we can.
Peaches and one babysitter hand squeezed us a large pitcher of lemonades from lemons off our tree, and she came home from camp this week having designed her own game. She has been full of smiles lately and noticeably less grumpy. Roo enjoyed a field trip to play mini golf with his social skills class, and brought home a daily evaluation form full of praise. They are sounding things out now and then, writing more and more. I am proud of my little ducks, and that makes it easier to endure the hours of careful calendaring, the intense commuting, the begging and borrowing, the expenses piling high.
Should I really click PUBLISH and tempt fate?
Oh, no way. If I end on a positive note the deities will punish me. Here is the down side of summer so far:
- The social skills camp for spectrum kids that we love? Practically promised to set up a carpool program. Not so much. Pick up is at 2:30. That is where the 7 babysitters come in, because I don't get home until 4. As if the camp didn't cost enough.
- So far we have no plan at all for Peaches for all of August.
- The rock star ed therapist? $150 an hour.
- Every day one of my kids has some special day, like Water Play or Sports Share or Field Trip, requiring me to do 10 extra things.
- I have vacation envy. It's just not in the cards for us to travel right now.
There, that's more like me.
How is summer treating YOU?
Monday, June 21, 2010
Wow. I don't disagree with a word she said. In fact, I agree too much.
What day does it happen? Your 30th birthday, do you wake up not young anymore? Or is it less a date and more a milestone -- like once your child outgrows 18M clothes, graduates to 2T, you don't have a baby anymore?
My husband laughed when I told him that the doctor drew blood I still needed, shot me in the other arm, then stabbed me through the heart with her honesty. "She don't know nothin'" he reassured me, knowing how I love a little Southern for comfort. But he's an LA boy. He also pulled out a little industry wisdom. "I was listening to Dustin Hoffman talk about how they don't offer him lead roles at his age. He said, 'So I'm middle aged, what can you do?' And his father roared, 'Middle aged? How many guys you know who are 120 years old?!' Cheer up, babe. You're still plenty young."
The grandmothers in my life lived into their nineties. Next month I will be 39. I'm not young anymore, it's true. I am middle aged. My babies will soon be too big for clothes with a T after the size. I feel funny shopping at the Gap. Sometimes, I confess, I buy from Talbots. When did this all happen?
But the truth of the matter is: I have more in my life than I ever dared to hope. My cynical preteen self stared at the board game LIFE my cousins liked to play and believed in my heart that the little plastic piece of my life would never have more than my own pink peg inside it. The day I married my husband filled me with more joy than I thought a human body could physically contain without igniting. And tonight, because of what began as an annoying scheduling snafu and a sudden change in ABA services, we all found ourselves home for the day before dinner time, so we enjoyed a special meal around the backyard table, the California golden sunlight streaming through the branches of the camphor and lemon trees. Now, our bellies full of veggies, grilled pork chops, and fresh squeezed lemonade, we are each doing our thing. Peaches rides her scooter, Roo swings on his rope swing, J sips his Pacifico and smiles at me blogging on my netbook in my PJs.
I don't too much mind not being young anymore, really. Like my mama likes to say, I earned these gray hairs that peek through my auburn mess. But my doc has a point about me needing to take care of myself. I do. We both want me to take better care of myself. She thinks it involves taking some pills, seeing one of her referrals, making more appointments, and maybe she's right. But for myself I prescribe missing more appointments, having more happy scheduling accidents, and spending time in the backyard with my family while my kids are still young.
Sunday, June 20, 2010
Maybe next year will be our jackpot year for our son at school.
Maybe the social skills class he starts tomorrow will make all the difference in him relating to peers.
Maybe soon we'll discover his special thing - his blissful sport or talent or interest.
Maybe if we find the right doc or -ist or advocate, they will hand us some missing piece that will make our lives easier.
Maybe some day Roo will have a best friend.
Maybe our family will disco.ver some day that autism added far more to our family than it subtracted.
Maybe we can find a different place to live where life feels more like living and less like surviving a grueling obstacle course.
Maybe I can just find a way -- hypnosis? therapy? conversion? magic? -- to change my perspective, and that will be enough, and I will not need the other maybes.
Wednesday, June 16, 2010
This book has nothing to do with autism. It is not intellectual. I found a typo. It is laced with profanity to the point that it uses an asterisk in the title. PC it is surely is not. If I hadn't read it on my iPhone via Kindle, I might have hid it in my garage. But you know about the research on how laughing clubs in some parts of the world provide tremendous benefits to people on an emotional and spiritual, sometimes even physical, level? Yeah, you don't need to Google the nearest one or travel to another continent if you want to laugh and feel good, you just need to get this book and read it. I went from weary wallow to hysterical hiccups in under an hour. I escaped stress, fear, anxiety, and fatigue, and I didn't have to learn anything, or agonize, or analyze, or emote, or anything but just observe, relate, and laugh.
Now, if bad language offends you, or if you saw no humor in Archie Bunker or the Roseanne show, don't read it. I don't want you to think less of me.
So, the book is called "Sh*t My Dad Says." Sue me if it's a crime: It cracks me up.
I'm already writing my next post in my head, about stuff my mother says...
And I can't help but wonder if one day my kids will write something about stuff I say. It's a scary thought; I surely don't give them much funny material. Tonight I heard Peaches whine to her dad, "Daddddyyyyyyy! Mommy just keeps saying only, 'uh huh.' Every time. It's all she says. 'Uh huh.'"
Thursday, June 10, 2010
I have been thinking of you. Yes, YOU. And you.
Let's take you, for instance. Do you know how many times I have thought of calling you lately? I look at the clock, do the math, and curse the time zones. I can't risk waking you, and I don't call ANYONE with little kids at 7 p.m. because I know what that hour is like. But I've been missing you lots and wanting to hear how you are.
And you... you would think living in the same city would mean we would see each other once in a while, but I look at your fb page to find out what's going on in your life. As much as I've thought of making a plan with you, I've honestly felt exhausted each time I imagined trying to keep my kids in line during a visit, and what I've just admitted makes me sad, too... am I a terrible mom?
And you... I LOVE your blog. I have starred recent posts and left myself reminders to leave you comments, but now that I do most of my reading on my phone, comments are so much harder to leave, and I just started my year of coursework... terrible excuses, and I just hope you forgive me, friend. Your blog is moving and powerful and I thank you for writing it.
And you -- I owe you a thank you card! Oh, I wrote it! I just can't for the life of me come up with postage. Soon.... thank you so much.
And you -- have I told you how happy I am for you and your big news? I really am.
And you, friend, who have been through so many trials lately. I sent you a huge energy thought the other day. Actually, I even enlisted J's help. We were driving, and we both concentrated on you, sent you some good joyful thoughts. Did you feel it?
Friends, don't hate me for thinking of you via a blog. Don't hate me period. I am pretty tapped out right now, but I'm hoping by late June to seem kind of human again.
I love ya; thanks for being a friend.
Monday, June 7, 2010
Ten years ago tonight did not fall on a Monday, but a Wednesday, and I remember that because ten years ago tomorrow my life would change forever on a Thursday night impromptu date at a divey gay bar with the man who would become my husband.
I can tell you, now that I've changed it, that I used to always use June8 as my password for everything. Before I learned about digital safety, it made sense: more than a date, "June 8" has become my mantra. My husband and I use it as shorthand. When one of us is sad, scared, worried, sick, in pain, or joyful, we can simply mention the date, and thereby share our support, comfort, love, and solidarity.
You know those melodramatic movie scenes in hospital delivery rooms? Well, in our real-life version, I breathed June 8, self medicated by repeating it over and over... My husband and I might have taken a pass on birthing classes, but he knew just how to hold my hand and invoke our magic date and help me do whatever it took to bring our child into the world.
On June 7, 2000, J was still the guy I'd just met online by searching a dating site for the keyword "writer." (Sure, he had to be a nonsmoker and live in driving distance, but my priority? I wanted to meet a Word Boy.) After scanning through about 2000 guys, J was among 7 I took the time to email, one of two I gave my phone number, and the only one that I talked to so long the battery died on my cordless land line. After exchanging what felt like real correspondence online for weeks and having a conversation so satisfying it felt like a real date, J and I agreed meet on a Friday June 9 for Indian food. But on Thursday, when he called to firm up the time and place for our plan, he caught me in a bad mood. I explained that I resented how my close friend had just called and talked me into meeting her and her East Coast visitors at a local dive bar, that I was both getting ready to go and simultaneously brooding about how to get out of it so that I would not be up so very late on a school night. The real root of my brooding? I didn't want to be tired the next day when I would finally meet J for the first time. "Don't worry about it," he told me. "Just decide to go out tonight and have fun. If you decide to have a good time, you will." I insisted that the evening had zero potential for fun... unless... unless maybe...
So, J and I spontaneously decided to move up our first date... we both went to the hipster bar that Thursday night on June 8 at 10 to meet my friend and her out-of-towners... I got to the bar first, and saw from the window when J got out of his car and walked toward the door. I knew. We had only exchanged one photo each, but I knew J the minute I saw him. I knew as he walked through the crowd toward me that I would greet him with a hug, and I knew as I hugged him that I would care about him. I knew when he held my hand that night that I might fall for him. I knew when we said goodnight that something important had happened in the 3 hours we spent holding hands, talking. I knew, and he says he knew too. Maybe so -- we have never been apart in any real sense ever since.
Eight years ago tonight was a Friday. We spent it out of town with friends and family who came to celebrate at what we loosely called a rehearsal dinner. The night epitomized what J and I describe as "usness" -- a warm gathering of good people with simple pleasures and heartfelt words. Since we were getting married out of town, I'd discovered the restaurant the way I had found J -- online. I'd found it through an intense search for just the right place by focusing on words... this restaurant was named for the fact that it is part art gallery, part book store. Ecclectic, unusual, perfect. And the perfection continued the next day, as on June 8, 2002, J and I walked ourselves down the aisle to Beatles music, exchanged vows we wrote ourselves, asked our friends and family to speak, and had his dad officially pronounce us husband and wife. A caterer we had never met, chosen for her company's name (Pure Joy) and online reputation, provided a picnic in the nearby park so inspired and delicious no one believed me when I told them how low she dropped her prices when she learned I taught children the same age as her little boy. (She also threw in extra desserts: "Teachers deserve to have amazing weddings with excellent food," she proclaimed, and I agreed!) One of my dear friends had just launched her photography business and shot our wedding for her costs only; just recently her gorgeous work graced major national bridal magazines, but not with photos any more moving than the ones she took on our simple, beautiful, magical day.
Tomorrow is June 8. Tomorrow is my favorite day, my favorite date. Tomorrow marks a decade of "usness" with the man who teaches me how to "decide to go out and have fun." Tomorrow marks the beginning of the journey toward a Rooster and a Peach.
Tomorrow I will not be blogging. I have a date.
Cynics, see you June 9,when we will resume our regularly scheduled ranting.
Happy anniversary, J. Happy June 8, everyone.