Thursday, April 29, 2010

Autism Mommy Therapist

There is a newcomer I want to welcome. I know, having received so many kind words of support from so many of you, that this community knows how to make a friendly new voice feel less alone on the journey of raising a child with autism. If you have a minute, won't you say hello?

Wednesday, April 28, 2010

Pill Box

We have put the Rooster on medications before, with great conflict in our hearts. We know the pros and cons, we weighed countless variables, we listened to doctors, we read, we cried, we gave them a try. We thought what we gave him seemed to help him in many positive ways, but as soon as we saw what we thought might be a side effect, we knew we didn't want to push our luck. Right now the Rooster does not take meds, but we have been considering trying again with a different prescription, and we've mentioned this to the school.

Friday our boy went on his first field trip without my husband or me to chaperone. I stared at the clock all day, concerned, waiting for the phone to ring. I took my cell with me to the bathroom. There I found myself preoccupied with wondering about the bathroom situation at the museum he was visiting. I reviewed in my head the other four field trips we went on this year, and how he seemed to do okay. I somehow managed not to chew on my nails.

Finally word came: Good trip! No problems. The teacher wanted to know: He was so good; had we medicated him?!

Ah, well. I try to remember that is good news. What it reminds me, though, is that my husband and I can't attribute every good day on meds to the meds. When we took him off the last prescription, I lived in fear he would regress. Instead, he seemed more present, his conversation more engaged. We really have no way of knowing how to tease apart all the variables to figure out what the meds did or didn't do for him.

I spend a little bit of every day analyzing why the boy did well or poorly at this or that. I analyze his meals, his sleep patterns, his health status, his routines, his sensory diet, and then usually I blame myself for any imperfections in any of the above. That is, when I'm not busy berating myself for what I did or didn't do or eat or take while pregnant, or loathing my own DNA.

Perhaps I have been spending time looking into meds for the wrong one of us.

Sunday, April 25, 2010

Remembering GG

The Rooster clan has heavy hearts tonight. We lost another member of Team Rooster.
After 90 years of a healthy and active life, Rooster's great-grandmother on his father's side passed away.
We are so grateful that in January we were able to attend a wonderful birthday dinner party for her, at a beautiful restaurant at the beach, with all her family gathered around.
After dinner, when we went back home for cake and ice cream, we set a timer on the camera and got great shots with everyone smiling and laughing, everyone's spirits high. I remember how she had spent part of that day reading books to Peaches and Rooster, as she did every time she saw them. Each time she finished a book, Rooster said the same thing: "Another one, please." Sometimes he'd tell her, "Let's get cozy, GG," and they would snuggle up on the sofa under a throw, books piled up on the coffee table. If another grownup tried to listen in on the stories, Rooster sometimes objected saying, "Shhh! We need privacy!" This could go on for an hour or more.
At her 90th, we truly celebrated a long and full life, and we embraced her with love and affection, and that is very fortunate. Just a few weeks ago, she went with her daughter and son-in-law on a getaway trip, where she dined in style, joked around, and went swimming. Her illness happened very suddenly.
She had devoted daughters and sons-in-law, loving and attentive grandchildren, adoring great grandchildren... she had a community of people who mourn her loss, but celebrate her life, and we hold her memory in our hearts.
The Rooster clan will miss her very much.

Friday, April 23, 2010

We have all judged, we have all assumed. I try not to, but I am human. I try hard to remember this when I feel judged, and when people make assumptions about my family or me. I try to remember we are all more alike than different, we all need the benefit of the doubt.

Still, here is what I want to say to those people who have assumed they know what it is like to raise my children, and who make judgments without compassion:

I don't know what it was like the first time you had a crush, or what it felt like when someone you loved suffered or died. I don't know what it feels like when you wake up in the morning, or how you dream at night. Even though, like you, I have loved, I have lost, I sleep and dream and wake, I can't know your experience. And I don't think you would like it if I assumed that I do know, that I could tell you how to pursue your career with more ambition so you wouldn't have such a lousy job, that I could teach you how to get in shape the right way so your backside wouldn't look like a nursery full of babies' dimples. If I have never walked in your shoes, you might find it callous of me to suggest you don't know the right way to put a spring in your step but that I do. You might think your business plan, your cancer diagnosis, or your dream to run the Boston Marathon are your own business, and you would be entirely right. You might resent it if I suggested you simply chill out, or take a class, or try it my way, as you work through your divorce or your partner's infidelity. I get that. Because I have encountered people like you who think they know what it's like for me to raise my kids, and who believe they have all the answers -- they can't fathom why I don't just get some therapy, a great sitter, some serious antidepressants, a stiff drink, a massage, and a different school for my child and just be done with all the whining already. Some are sure I should be more aggressive while others think I just need some inspired yoga, but the truth is, the one thing I need to be more of is just RESPECTED without judgment. I need that, my kids need that, and even you who stand in judgment need that.

And no, I'm not talking about you. You are the choir, of course. I'd tell the judgers, but you know what they would say... I'm telling you because I bet you know EXACTLY what I mean, and I thought, for a moment, we could stand together and, hypocritical or not, point back at those who choose to point at us.

Monday, April 19, 2010

Walking the Plank

This morning, when J took our boy onto the school yard for morning lineup, he noticed the other kindergartners pointing. He heard them talking about the Rooster as they entered campus. "He is not normal," they said. J held Roo's hand and approached the group, who continued to point and talk animatedly about our boy. "He is not a normal human being," a little girl said, "he spits." Another boy in the throng didn't like my husband telling the kids to back down, telling them to not say that any more. "He is not normal," the boy said, turning his back on my husband and my Roo.

Around 1:15, J called me. He told me what happened, how my son began his Monday morning after our first decent weekend in months. He told me my son did not even react, he simply held firmly to J's hand. "Why did you wait so long to tell me this?" I shouted, looking at the clock, torn between listening further and racing to call the principal before the school day ended. "That was 5 hours ago!" And then my resilient husband's voice broke.

I'm the kind of girl who compulsively asks people, "Are you okay?" I have asked J about a dozen times a day for a decade. It's a reflex; he gives the same honest answer every time except for today. Today he said, "No."

The teachers tell us this: It does not begin with the children. It comes from the parents. Parents who worry that No Child Left Behind means All Kids Left Behind, and think my son will keep their kids from a good education. Parents who know little or nothing about autism. Parents who think inclusion is like a tax they don't want to pay, a charity they don't wish to bestow. Parents who think "those kids" like mine should be in "other" places.

I have to end this post now even though I have so much more to say. I have 20 pirate birthday party invitations to fill out, address, and stuff with treasure maps to our house. I have 20 children to kill with kindness. I have almost 40 parents to think about, long and hard, so I can remember my empathy, my compassion. I have toy eye patches and other booty to buy for a six-year-old Matey who is very much a normal human being, a normal human being who has what is becoming an all too normal challenge: intolerance and discrimination because of his autism.

Saturday, April 17, 2010

This Child

"I no longer wish to parent this child."
Have you heard the news?
Well, if you have been to this blog before, you know sometimes I get inarticulate when I get upset, so I've been thinking more than usual about what I want to say here. I apologize if I'm nonetheless incoherent and rambling, but I know I have to get this off my chest.

What does it mean to be a parent? To be a family? To make a commitment?

When I was 10 or 11, my dad took off, and I never saw him again. Don't be sorry -- I consider his absence a stroke of luck, because my father was a criminal, an addict, and a compulsive liar, and I ended up with my mom and the two best grandparents any child could ever have. But I spent a lot of time in my childhood thinking about what it meant to have had my father leave. At times I wondered if it marked me somehow. Was I unlovable? Was I a loser? Was I only half as loved as my friends? And I wondered how I might pay the price; after all, I knew at least one friend whose parents didn't feel comfortable having her play at my house because of our "situation." I knew it was not my fault that my parents divorced or that my father defrauded people or that he left. I knew, too, though, that I carried his genes, and I wondered if that did make me tainted, if I would grow up and steal or drink or have addictions. I wondered if I would leave my children someday. I simultaneously vowed to be nothing like him and to worry that I might not have a choice given my DNA. And while I was not ashamed that my father had walked out on us, I sometimes felt embarrassed that I had no one to take me to the Father-Daughter picnic kind of thing.

Along the way, surrogates come into all our lives -- people you adopt or who adopt you as the next-best-thing-to-kin. We have soul sisters, father figures, borrowed Grannies and all the rest. We build a community based on love connections rather than blood ties. But sometimes when conflicts arise in those connections, and sometimes when endings happen, people end up saying, "Well, blood is thicker than water." Sometimes people feel that if you aren't related to them, it's easier to walk away away from you. And then the sting returns... and then if you lose that person, you feel acutely reminded that you don't have those blood ties.

I don't say goodbyes as easily as some. I believe in commitment. I believe in wedding vows and til death do us part, I believe that when you adopt a child you are their family the same as any other family.

Oh, sure, I might fantasize about running away from home as much or more than the next girl, but the truth is, I believe strongly in responsibility to home and family, in putting the good of the tribe ahead of the good for myself.

If I make a promise, I mean it. If I make a bargain, I keep up my end of the deal. Sometimes I still wonder what part of my father I carry inside me, but I'm nearly as old now as he was when he fled, and so far the only family resemblance I'm aware of comes in my ruddy cheeks and blue eyes.

I do not know the woman from Florida in the news for sending her adopted child back to Russia with a note saying she longer wished to parent her child. In fact, I know very little about her, because I can't bring myself to follow the news coverage. I heard the basics on the radio while I was driving, and before the 30 second piece ended, I had tears in my eyes and turned the station. I guess I have always reacted strongly to stories of child abandonment, I guess I always will. But I wasn't thinking of my father when I heard that story. I was thinking, as I always am I guess, of my children.

What if my Rooster was orphaned, had no family to raise him? Would he be unadoptable? Would he suffer a similar fate to the boy from Russia who was turned away for having too many issues?

Children are beautiful little beings we fantasize about when we want to start families. Then the come home, still beautiful and small, but much harder than we imagined. They come with dramas and they take enormous effort and they can pummel you sometimes with their force, flatten you with their needs. But parents who choose to have them (biologically or legally) make a promise, a commitment, a sacred pact. To me parenthood goes something like this:

I will love you, my child, no matter how hard it gets. I might not like everything about you, but I will do my best to raise you to be a person you will love, who will have things to offer the world, who will love your life. I will shelter you, I will protect you, and I will teach you. Wherever I have a home, you have one as well. Your childhood will not last forever, and so I will treat it as a sacred space in time, and I will use it to help you begin the best future you can have. I will be your parent, you will be my child, and nothing can come between that.

As someone who admittedly kvetches ad naseum how hard I find it to parent, and how difficult it seems my children can be, I really cannot imagine doing anything else. I cannot imagine ever walking away. I cannot fathom writing down the words, "I no longer wish to parent this child."

Tuesday, April 13, 2010


How ironic that after my last post, called Snap, I snapped.
Lost it.
"Dropped my basket."
Flipped my lid.

Both my kids have been tougher than usual, circumstances have been tougher than usual, and J was not at home for the day when Rooster was particularly "off" this weekend. I still had not recovered from Spring Break and family birthdays and Disney Land and epic meltdowns, and suddenly the Rooster hung on the curtains and broke the rod. When I spoke sharply, he mocked me. My head spun around backward a few hundred times as I spiralled out into lalaland and without all of you here to stop me, I snapped.

(***Wait, important DISCLAIMER. Don't turn me in to any agencies, or yell at me for stuff I know. Below is bad mama, and I own it, and I apologize. I offer myself up here as a learning experience, and I promise to do better - the best I can - from here on out.)

I grabbed my boy, hauled him off to his room, got on my knees, stared eyeball to eyeball with him, and started yelling. Crying, frothing at the mouth a bit too I imagine... I think I had three heads, and I think we were both shaking.

My incoherent meltdown went something like this, and I hope you believe me when I tell you I'm not usually insane this way:

"Rooster! ROOO! Rooo! LOOK AT ME! LOOK AT MY EYES. Where ARE YOU? Where is MY BOY??! Rooster, MOMMY is so UPSET because I NEED YOU, and sometimes you are here, and sometimes YOU ARE GONE!!! WHAT? HAPPENS? TO? YOU? You CANNOT just leave me sometimes, Rooster! I am trying so hard! I am doing everything I can think of to help you behave. And what are you doing? Fighting! Screaming! Not listening! Saying mean words! Hitting your sister. Pulling on the curtains over and over and over and over no matter how many times I tell you to stop and then you BREAK the curtains, Rooster! Look at me! We have talked about this! Rooster, we are not going to let autism hide my good boy! I NEED my good boy! I need him! Do you HEAR ME? Do you know how much I NEED MY ROOSTER?! Do you? Do you? HOW MUCH DOES MOMMY LOVE YOU, ROO? YOU MUST STAY HERE WITH ME! You must do three things. You MUST love, try to learn, and try to be happy! THAT IS IT, thatisyourjob! Do those things! Say them! LOVE, LEARN, BE HAPPY. Again. LOVE, LEARN, BE HAPPY. Does this look like loving, learning and being happy? NO! It does NOT! This day looks like fighting and being grumpy and sad and it's TOO MUCH. IT HAS TO STOP! RIGHT NOW! RIGHT NOW! RIGHT THIS MINUTE! RIGHT THIS VERY MINUTE RIGHT NOW!"

I'm embarrassed to write it, horrified to have freaked like that. But? Hey, I think it did reach him. He cried. I cried. We both felt scared. But he hasn't touched the curtains since. That doesn't mean I'm defending myself, it's just a side note. And I'm seriously considering fitting in another therapist in our crazy schedule -- this one, for me. Anyone know one that makes house calls? Maybe Skypes?!

Sunday, April 11, 2010


My husband gave me a metaphor the other day that has me thinking.

See, I have a weird jaw problem, a kind of TMJ that has bothered me since childhood. When my jaw is "out," which is about half the time, it ranges from mildy irritating to intensely painful, and the longer it stays "out," the more the discomfort spreads to my shoulder, my head, my neck, my back. Then, my jaw pops; the ball and joint essentially line up properly again, my jaw goes back "in," and I feel immense relief, until the next time.

The other night after J tucked in the Rooster, I asked, "Does he still feel off to you? Still feel far away?" He said, "Yeah. It's like your jaw. Things haven't felt right for a few weeks. I keep waiting for him to suddenly snap back like he does, to look me in the eye and say, 'Daddy, Daddy, listen...' and have a real conversation with me again."

You know what a sucker I am for just about any cheap metaphor, and this one really made sense to me. I've been thinking about it ever since.

Yes, it does feel like our Rooster has two essential states -- one where he feels present and accesible, and one where we talk about him as being "off," meaning varying degress of unreachable. Sometimes I get angry or frustrated or depressed about the Rooster being off, and sometimes it feels like he'll never come back again. Having the jaw metaphor helps. First, the metaphor reminds me that the Rooster likely feels at least as much discomfort when he's off as we do, and so I need to be more understanding. Whatever causes him to veer off (illness? food? chemistry? fatigue? emotions? AUTISM?!) is something beyond his control, something happening to his body, not a choice he makes. The longer he suffers, the more likely the affect is to spread --- we see his language weaken, his very limited impulse control vanish entirely. It also helps me realize that neither state is likely to be permanent. My jaw has always popped eventually.

And you know what helps my jaw? Rest. Relaxing. Massage. Reduced stress. TLC.

We've had some bad weeks here. The Rooster has been off, my jaw has ached, we've all been gritting our teeth and butting heads.

We all need a little relief.

Wednesday, April 7, 2010


I am watching Parenthood on Hulu on J's Mac mini in our bedroom to escape for a little while because he was afraid my other escape from parenthood might be more drastic and involve a padded room, and that sounded expensive and messy. I'll come back to that later. More important to me in this moment, though, as a former arts and entertainment writer, I sit here watching something actually geared for my own demographic for one of the rare times in the last half a decade, and I find myself strangely compelled to do a little of my old schtick.

Maybe I felt a little time warp seeing Lauren Gilmore -- I mean, Lauren Graham -- with the same hair she had before I had children when we'd meet up on Tuesday nights on the WB to compare dysfunctional families. This time, her dysfunctional family has both more and less in common with my own family, but just like with Gilmore Girls, I can't stop drawing comparisons while I watch the show.

In the Gilmore Girls, I was Rory, the studious offspring of the antiauthoritarian mother Graham played -- I was the girl who deeply loved her grandparents, worked on the school newspaper, wanted to tackle the world. In Parenthood, I am Kristina Braverman, mother of two, increasingly overwhelmed by worrying about my son's special needs. I'm seeing lots of reactions to Parenthood within the online autism community, and while the reactions to the Asperger's storyline are mixed, the likeability of the overall show seems a common thread. I suspect it's because, like me, many people see themselves in one or more of the characters, who all seem familiar in an overly stylized kind of way.

Yes, TV shows oversimplify, follow a predictable arc, wrap everything up neatly in well under an hour once you take out the ads. Yes, they stereotype, and sure, everyone is kind of hot. Parenthood is one of a good many shows where you can't help get distracted thinking about the implausible math when you try to reconcile the ages of the characters and the casting. Those things are necessary ingredients in the recipe for Hollywood offerings. But here is my more nitty gritty comparison between The Braverman Clan and the Rooster Household.

- So, as I write this, Max's new behaviorist is offering him a chance to earn a lizard if he will play four square with a girl at the park. Now, the Rooster would take a lizard any day over whatever is the hottest game rocking the elementary world. But his response would to the quid pro quo would go something more like this: NO! NOW GIVE ME A LIZARD NOWWWWWWWWW. I'M NOT PLAYING WITH HER, BUT I WANT THE LIZARD. RIGHT NOW.
And let's say he did agree to the cupcake behaviorist's deal. They're going to need a few seasons and a few more specialists to help him figure out the coordination and focus to play the game.
- Now I'm watching a scene between Max's parents as they talk about their sex life. Okay, well, I think it's great they have time to talk about it, greater still time to do it. But the part that I can't relate to AT ALL? That Max's mom is going to tell the young, adorable, ABA chick who clearly has no stretch marks that Max's dad, and I quote, "has a good one." Or did I mishear that line? Please tell me I did. Because I'd be more likely to tell the new pretty young thing working long hours at my house that my husband has the smelliest socks in history and terrible morning breath. He doesn't, but I wouldn't mind her thinking so. Let her keep her eye on the little boy, not the big one!
- So now the episode is wrapping up, and everybody is playing nicely, adults and kids alike. The wayward teen has ulterior motives, but at least she's doing extra credit work on the literary journal. (I approve, and the title "Spectrum" was a nice touch.) Max wants some bugs, so he seems ready to do more social skills work at the park, no big deal. The single guy springs his biracial son onhis parents for the first time and they smile and break out the family bicycle so he can sail off down the road to new family cheers. The Type-A attorney accepts that another mama she loathes from the playgroup put the moves on her stay-at-home husband and even offers to put their daughters into a pottery class together. It's not that I mind the happily ever after, I even like living vicariously through it. But in the final scene, Max's mother remarks that she finally feels relaxed after two months.
Wow, the Bravermans went from diagnosis to relaxed thanks to ABA in less time that the Rooster clan managed to make it through the waiting list to sign up for the prerequisite parenting class before we could get into ABA...

I jokingly call us the Rooster clan, but really I envy people with a clan around. I envy the way the Braverman siblings check in on each other, the way the home of the senior Bravermans serves as a hub where everyone connects. Sure, they aren't real, life isn't that simple. But that's why I use it for escapism.

And why, are you wondering, do I need to escape? Well, I promised I'd get back to that. You see, yesterday, I took the kids to Rooster's school for Open House, and with several hundred kids around, my two stood out dramatically as the two worst behaved, to the point that I grounded Peach for the first time while she is a ripe old four years old. J had to drive them both to school today, because I woke up just as furious as I'd gone to bed. Then, today Rooster came home from school with a note that he'd been sent to the principal's office after having four time outs. He spit three times, called somebody a "jack @ss" and finally got the boot when he gave his teacher and aide his middle finger. Everything is being documented since parents started complaining about Rooster about a month ago, we have is IEP early in May, and we're wondering if we should be thinking about yet another school placement before too long. So you could argue that my escapist time would be better spent with something a little less close to home than a show called Parenthood that has an autism story line, but I was actually happier to spend my evening with Max and his peeps than with my own two tonight. And if you think that sounds mean and heartless, I welcome you to come over and demonstrate your best techniques for quality time at Casa del Rooster. If you can find the happy ending over here, you're a Braverman than I.

Saturday, April 3, 2010

Ho Ho Ho, Notable and Quotable HUMOR!

We need a laugh around here.
So I am going to give you one. I want you to humor ME, though, and read the following scene as it transpired, out loud. Trust me, it's almost worthy of a snort, this notable and quotable from my Peach, who has been a rather rotten peach while her grandma visited this week, I have to say. So, we here are grateful for the laugh and are eager to share the mirth with all of you. But get ready to read ALOUD, please. Don't preread it silently, even if you are alone in the room. This one gets its guffaw from the voice.

As a quick side note, I've never once seen my husband obsess on anything outside his passion for filmmaking until he was moved by his deep hurt and frustration in response to a certain schmockity nonsense. My heart aches at his sincere, bewildered, aching discomfort. I figure a certain someone for what she said, but I wish she knew my sweet husband and how she shook him. It is for his sake I've been looking for all the laughs we can get, and so you now need to prepare yourself to read this like a four-year-old and her weary mama:

Peaches: Mama, I see the waiter, and the cleaner upper and the cooker. Is that all? Who else works in this restaurant?

Me: The hostess.

Peaches: Hostess? What is a hostess?

Me: She is the lady who walked us to our seats and gave you your crayons, remember?

Peaches: Hostess? Do they ever call her a ho?

Me: Um, no. No. Would anyone call me Guh? Just Guh, instead of my whole name? That would be silly.

Peaches: But hostess is a long word. What if she is rushing by and they want to talk to her? They could just shout, (SHOUT THIS PART, READER, AS PEACH DID) "HEY! HO! COME OVER HERE, HO!"