Sunday, November 30, 2008

When Autism Goes Partying

Someone could write a whole, heavy, long, book about handling autism at parties. 

Someone SHOULD. It could be funny, sad, poignant, and educational. 

You, you should do it. You, the organized one? Compile the stories from so many of us who know all too well about the joys and hazards of parties, edit out any objectionable language, make sure not to make it seem like we're stereotyping or saying that our kids ARE autism, and make sure people with NT families learn something, gain some understanding. Make sure people get their "I laughed, I cried" money's worth, too. Give it an intriguing title. Publish it with or some such online tool. We'll all schpiel it on our blogs, you can make millions, and then donate the proceeds to UNICEF or something. 

I digress. 

We went to a party this weekend. Whoa, the opportunities for reflection. For us, going to a party doesn't ever just happen. We plan as if headed overseas. Doesn't matter, though; surprises are in store. 

So, this time we headed to the first birthday party of an adorable little boy in childcare with Peaches. His mother and I work together. She knows the rooster well, and asked how she could make things go smoothly for him. I LOVE HER. I brought her a stash of gfcf candy for her to use in his goody bag, and she assured me she planned to stock the kids' table with fruits and juice boxes my boy could enjoy. I packed my own bag of treats, too, of course, and baked gfcf brownies in case we did not manage our escape prior to cake. 

We drove to the birthday boy's grandmother's home, quite a distance from our own, extra early in hopes of managing naps en route. Peaches collapsed, but Rooster asked over and over, "Are we there yet? Tell me when. Now? Tell me when." 

An adorable little puppy greeted us. With a child allergic to everything including air, we've had surprisingly few physical reactions to dogs, but behavioral reactions make up for that. Squealing, lots of squealing, from both boy and canine. 

Of course, we knew several of the guests, other teachers from school and their kids. But, this was no small affair. I mean, these people know how to throw a bash -- complete with a deejay, chafing dishes full of delicious food, a pirate theme to the nth degree, organized games, and tons of people -- alllll kinds of people. 

I am not sure how many times the rooster covered his ears and asked to go home, but for each of those times, he subsequently asked to stay and play more. We paid careful attention to his cues and I think we managed to leave at the right time for him, but we also stayed almost two full and mostly successful hours. 

At one point, my sweet husband watched the rooster play while I watched Peaches. Later, my husband, J, commented how he felt a tug seeing our boy walk up to children and shove a toy in their faces, not knowing how to appropriately initiate. Then, he looked over to see a severely disabled girl, probably more of a young woman than a girl, really, being held and kissed and fed by her parents. This girl could not communicate. My husband felt all kinds of tugs then, and a longing to know the best way to reach out to her parents. 

When the rooster approached familiar kids, they gave him latitude. Probably their parents have helped them understand our boy better. We gave rooster some scripts to try to help him approach new kids at the party, and it helped some, too. Suddenly a sweet blonde child in an adorable skirt didn't bother to wait for his approach. She immediately wanted to play with the rooster! He struggled a little in the beginning, and whether I should have or not, I found myself saying to her, "He just sometimes can't quite find the right words he wants to say, but he's trying to play with you, so if you want to play with him, that's great." Neither the rooster nor this darling and highly verbal girl, E, seemed to mind my little coaching. She showed him to the pirate mast where they could poke their heads through and have their photos taken. She asked him to -- can you believe this? -- dance! They danced! Neither of them yet five years old, they had some serious moves! They all but held hands! When the rooster freaked out over the little puppy in front of E, she calmly told her about her own dog. He listened. He responded. Appropriately. Together they moved away from the puppy. They volleyed like conversation never stood in the rooster's way before... for a few minutes. When words failed him, he gazed at her adoringly. I did, too. I practically offered her folks a dowry. 

Then, they started the balloon game. I think I've written before that the rooster obsesses about balloons, and that we used to have to read him Jamie Lee Curtis' book on the subject (Where Do Balloons Go When You Let Them Go Free) about 20 times each day. If he sees a balloon, he wants it. If he gets it, he wants to set it free. Then, he wants it again. 

Ah, autism. When it goes partying, things get interesting. 

So every child received a balloon, followed by some horrifying instructions to pop other people's balloons, and I didn't catch the rest of the details because it was too late. E popped the rooster's balloon, literally, metaphorically, completely. I think "bereft" describes his reaction. She, for her part, had no idea why he reacted as he did. She sought and received confirmation that she did just as she had been instructed. So of course she felt confused; darling E didn't see the rooster's autism, so his reaction puzzled her. Clearly she wanted to make amends for upsetting him even though she had done nothing wrong, so she reached in her pocket and pulled out the M&Ms she'd squirreled away, and held them out to him. To which, of course, I had to intervene and explain he has "allergies."

On the way home, we all munched on gfcf brownies and celebrated the successes of the evening. We all enjoyed ourselves for a while, we let our guard down some, we left on decent terms with everyone. The rooster and E made their peace, if not reconciled completely. And at least we didn't have to shell out for a dowry. 

I haven't had as much fun at a party in five years. 

Wednesday, November 19, 2008

Strange But True

  • Tonight, something weird happened.
    Something so bizarre that I don't imagine it will ever be repeated.
    I'm still scratching my head in puzzlement.
    Tonight was bad.
    ONLY bad. Not awful, not horrendous, not epic... (at least, not yet). Weird, huh? It's crazy.
    It has been about a month since the needle only moved as high as "bad" on the miserometer.
    It started when we got home from school/work, and the rooster's voice seemed to shift from his tirade tone into distantly familiar, somewhat likeable intonations. Sure, there was still combat to do, screamfests with his sister over TV, toys, touching, and turns. But some reason mixed in, too. The Peaches seemed less two, too. And her cough subsided to where she doesn't seem like you need to wear a mask to be around her. But she ought to quit smoking, that's for sure.
    Now, I tell you this in FULL cognition that have I invoked the hex of the spirits who despise me, but I also know that I wasn't going to get two days in a row of just plain bad, anyways, so I figured, as Kia would say, whatevs, people.
    I tell you the facts: It's an hour past bedtime and they are stretching out their dramas, but I just walked away to let my husband handle it, because he's a nicer human being than I am, and he won't likely threaten them with bodily harm just in time to give them nightmares as I might. But the sound of the Peaches shrilly screaming for Daddy to COME BACK and tuck her in a fourteenth time doesn't bring me to my psychological knees this time. Why? Because we had merely a bad night. Remember, for us, read "bad" like this: good. On our scale, bad is okay. On our scale, bad is what you shoot for a lot of the time. Our scale goes like this:

    epic warfare
    horrible, awful, like that kid's book about the "no good, very bad day"
    sort of fine

    So, on a day in which we had additional lab work to look into possible lead poisoning, had to pull the car over multiple times in traffic to stop the children for harming each other on the commute, talked to the school psychologist about the difficult recent days in class, worked hard at two busy jobs, handed down multiple time-outs, bribed our rooster to take his medicine with an hour-long and messy smoothie making session, still haven't managed the final tuck ins, and found out we'll be sleeping on the floor for another 5 nights, I say we have landed only one step away from our highest pinnacle of familial positivity -- we are bad, and within spitting range of sort of fine.

    This too shall pass.

    (* Please keep sending good thoughts about the worrisome problem I'm trying not to focus on, would you? *)

Tuesday, November 18, 2008

Lead Balloons

I asked our developmental pediatrician how she felt about chelation. "Except in extreme cases, I'd be wary," she said, or something like that. "It can be quite dangerous."

The rooster's blood work came back, because I'd asked her to check for something or other, and she called me. "Can you come in sooner than our next appointment?" No one likes questions like this, but of course we say YES.

I was sure she'd say, whoa, bad mercury levels, how COULD you have gotten a flu shot while pregnant? Well, not exactly, but my guilt button was on high alert even though, as I said, I have no reason to believe anything other than genetics necessarily "caused" the rooster to have autism.

Well, the level for mercury was far to the left, like several other levels, clearly in the safe zone. Then, about four zones to the right, LEAD.

We have to have more tests. Add a trip to Children's Hospital to our imminent itinerary to the pediatrician for a physical, the dentist for torture, the OT, speech, and the eye doc. Then, the results will indicate our course of action. Might be okay, might be able to give him more iron, calcium, B6, and eliminate potential sources of lead in our home. (Read: expensive repiping coming soon to a home near ours.) But, then she said, if the tests don't come out looking good, we will have to talk. We will need to discuss chelation.


I slept about four hours last night. Three of them in a row. All of them on the floor. None of them after 4. 

A healthy, rested, balanced person could do this, at least once in a while. I am not healthy, rested, or balanced, because I've been doing this too long. 

She has a cough. She wet the bed. He heard her cough. He had a dream. Four on the floor of the playroom, never settling in, never back to sleep. And now I'm supposed to go to work and be extra efficient to make up for the day out yesterday. Or just finally give up? 

A major problem with this continuous sleep deprivation is the vicious cycle of it. Once you fry me to a certain point, I don't stand a chance at doing lots of proactive things when the next evening rolls around. I am way too tired to think of duct taping the diaper so it doesn't leak, or buying the special organic turkey the rooster can eat to fill him full of Thanksgiving drowsiness, and you can forget soothing lullabies and warm baths just before bed. I am barely able to function, as in bathe, drive, work, feed and clothe them, administer medications, keep them from ending up in the ER. And with the rooster up at all hours, he will be a joy if he goes to school. It's my husband's turn to miss work, and so I guess he will. He will give the girl her cough syrup and the boy his constant, unwavering, necessary supervision, and we will hope sick days will still be left over for when surgeries and emergencies come again as they have the last two years. We are not rich -- there is no nanny waiting in the wings. 

They call it beauty sleep for many reasons. I look like I could be my own grandmother. I don't wear any makeup, but I'm realizing that needs to change. And if beauty is as beauty does, well, let's just say I'm haggard inside and out. As you can surely tell, I'm wretched. How you are still reading is hard to grasp...

In no way am I trying to make a religious proclamation; I don't ever really want to go into that private realm too deeply in the blogosphere. That is not my topic. But in light of the sleep torture, I have to confess this: In my stupor, I regularly picture some all-powerful being, up above me, watching, and he HATES me. He TORTURES me. I ask myself if it's punishment, or just a malicious game. I wonder if I did something terrible in a previous life. Or maybe because I cheated death as a child (that is another post), this is the consequence. Maybe it's because I have NOT connected with a deep and abiding faith as I would really like to do. Maybe I am in a movie like the Truman Show, only it's the Rooster Show. Maybe someone cast a curse or hex on me, or has a ghkcole voodoo doll. Maybe I'm just a melodramatic, fried human being -- yes, yes, absolutely that must most likely fit the bill. Nothing can truly be as draining as I perceive this to be, it's just life, and I've gone soft. But I do sometimes throw my head back, and shout up at the sky, "Well then I hate you too!" This will cost me some of my readers, but maybe instead of despising me, you could pray for me. I am not good at doing it for myself, and the whole family here, including the two small innocents, would forever appreciate your prayers for a little rest, and a little balance, and a huge dollop of perspective. 

Please, though, whatever you do: don't send me solution ideas. Tried. Did. Done. Can't. Already thought of it. Moving on. Really. Puleaaze. 

Now, if you'll excuse me, I have to start my day. 

Monday, November 17, 2008


My husband and I have an epic To Do List that has gained serious weight over the last five years, but lately I am most concerned over our lack of a will, or whatever legal document you need when you have little wealth and two children to leave behind if something unexpected happens. 

So, just in case, I thought: why not blog some "last wishes"? I mean, we hope to take a little getaway soon, and we have no intention whatsoever of making it permanent, but it could be or first time flying together without kids... Plus, when you live in Southern California, you have plenty of reminders to contemplate your mortality, you know?  

So, for the record: 
I've never wanted a funeral. Not to say I wouldn't want a gathering, but a party would be my preference. A party with LOTS of food, nice words, many photos. The more stories, the better, but nice ones -- here or gone, I don't want to be roasted! And I surely do NOT wish to attend the party -- I don't want anyone looking at me then, so I hope to be cremated. 

All my stuff should go to my kids, of course (and my mom and stepdad), but the real question is where do my kids go? Naturally my husband and I have discussed this about a billion times. When the rooster was born, we even asked my brother-in-law and sister-in-law to be godparents. However, they didn't have kids then. Now, they do. And we didn't know the rooster had autism then. Now, we do. Since our original conversation, they've moved to a new city, started new career journeys, started a family of their own, and learned about the roster's challenges. I call that a game changer. I know they'd still want to help, but I don't know that it would be the best thing for everyone. 

When I hypothetically try to imagine J and I gone, I immediately feel an urgent need to think that the Rooster and Peaches need to stay together. And let's not kid anyone: they are undeniably adorable, but no easy package. It takes more than just love to raise them. It takes fortitude. Stamina. My grandparents played a major role in raising me, but the most aggressive thing I ever did was clutch my novels too tightly. And yet what about how much my folks and my inlaws would want proximity to the kids with us gone? Yet they live 3,000 miles apart. My family lives in a place practically foreign to my kids, and my in-laws live, as I do now, in a state I myself hope to flee before the kids reach their teen years. 

There really is no perfect answer to this dark question, and my planning instincts feel thwarted when I try to puzzle out a possible solution. But here is what I hope in any event:

- I hope that my children always live in a place where they feel accepted and loved. 
- I hope that they always have each other. Peaches is the best gift we ever gave the Rooster, and no one on earth will ever have her back the way that he does. Sure, he pounces on her back every chance he gets (and steals her snack as soon as she looks away), but if you dare so much as raise your voice slightly when addressing her, he will go all Brother Bear: "DON'T you DARE talk like that to MY SISTER!"
- I hope that my children live somewhere that feels more like a village than like a bonfire of the vanities. I hope that they have plenty of exposure to arts, culture, diversity, opportunity, and very little exposure to drugs, materialism, excess, and violence. 
- I hope that my children will always hear about their parents' love, and have tangible proof of it all around them. 
- I hope that my children never feel like they represent a burden to anyone. 
- I hope that whoever raises my children feels lucky, grateful, and blessed. I know I do. This blog might not always show it, but I do. Beaten down as I am, thrashed and contemplating my possible demise, warped and skewed, I am grateful nonetheless. 

Sunday, November 16, 2008


I am horrible. 

All weekend, I held on to the thought of Monday. Escaping back to work. I know, that alone makes me horrible. But I get worse. 

My city is on fire, and instead of spending more time contemplating what those fires have cost in terms of lives and homes, I thought, why me? Why is it my kids can never breathe well, sleep well, rest... why can't we go outside? Friggin fires. Why do we have to spend the weekend indoors with towels around the doors and the air purifier and the humidifier and hot showers running... All weekend, I thought, make it past this meltdown the kids are throwing, this tantrum, this fight, this mountain of chores, this endless To Do List, and please, please, please, please, let it be Monday soon. I need a break from my real life and I want to WORK, where things feel reasonable and sane. 

Not to excuse myself, but we have been sleeping on the floor for almost a week because the mattress that we ordered was toxic. Last weekend we spent all throwing up and worse. The weekend before I spent sick as a dog with fever and chills. This weekend my husband was out of the house a lot, so it was just the kids and me, locked in away from the smoky air, and I was counting down. Desperation. Facebook games alone got me through a rough evening patch, the way you hear someone stranded for days lived on Cliff Bars. 

Now, my daughter is really coughing, having trouble, in distress. When this happens I run to her, and my heart is full of concern, and my words to her full of love and reassurance, and I call the doc, and we get the meds, and I kiss her little face while we nebulize her with the machine that was a ritual for the rooster every day for over a year, and I can be in the moment, real, engaged, loving, ME, but then when I lay her back in her bed for the eleventh time, I am horrible again -- resenting that tomorrow I will not go to work, but spend yet another day with ... do I really say this with dread? -- my kids. 

People, all I ever wanted was my kids. I treasure them. 

But some days, I do decry, COME ON, one is autistic, one has the terrible twos, they have egregiously flawed immune systems, we have no family nearby, and I get a good night's sleep once every 14 to 21 days. Going on five sleepless years. COME ON. This is not family life. This is TORTURE. What am I doing? 

So yes I am horrible. But here is another horrible confession. Sometimes I worry when we finally come through this to any kind of "other side" -- like maybe when my two kids are old enough that they do not require heightened constant vigilance at every single solitary moment -- that I will be too old to enjoy any of it. I'll be like the bitter wife going through a divorce to the guy she put through med school screaming, "I gave you the best year's of my life!!! And now this!!!" 

These are my horrible, dark thoughts, that for some reason I feel compelled to spew in cyberspace. Guilt and insanity, I guess.

I am going to donate to the Red Cross, get the news update on the fires, and try to stop thinking like an asshole. Wish me luck. And wish me sleep. 

Thursday, November 13, 2008

Nebraska Road Trip

No one act too surprised if you read on Facebook that I've taken a little road trip to Nebraska, okay?

Monday, November 10, 2008

What If

The Rooster's speech therapist encouraged us to practice the construction, "What do you think..."

So Saturday we started working on "What do you think about..." and "What do you think will happen if..." because these are the kinds of questions you often hear in school. We have asked him so many questions that he can see it coming from the sound of the "Wh" and I thought he might have started to tune out. 

Tonight I sat on the bathroom floor watching the Roo playing with his cars in the water, and he looked at me and asked, "Mommy, what do you fink if I zoom my car over the side of the bath and then fast down into the water?" I said, "I think it will splash." He said, "Yeah. And I fink I will laugh. Let's see!" 

And for once we were both right. 

Sunday, November 9, 2008

Unanswerable questions

I have the best husband ever. He is adorable, sweet, and smart, and no, I have no idea why he picked me. I remember asking over and over and over and over when we met how on earth no one had snatched him up by then, allowing him to reach the ripe old age of 28 without a wife. 

We have very little in common, as you can see. The part that will clearly indicate to you that he "completes me" is this: you can't bring J down. He buoys back every time. And not in an annoying way, either. He's no bright-sider, no Dudley Do-right. He just has a natural Tiggerishness to my Eeyoreness. I like him. I love him. I'm crazy about him. I want to be more like him. Stay away from him, I found him first. 

If you don't hear a "but" coming, you must be new here. 

So, here is the Meme I have had on my mind. If you knew you had to ask your partner/spouse/significant other 20 objective questions that they could NOT possibly answer, what would you ask? You know, stumpers that might have been on that old show, The Newlywed Game...

Here is my list of THE UNANSWERABLE:

How many loads of laundry do our children require a week? 
What do we need at the grocery store? 
What is today's date? 
How does one go about sending holiday cards? 
Name all of our kids' current teachers. 
What do our children eat for breakfast on weekdays?
What do our children eat for lunch on weekdays? 
What do our children eat for dinner on weekdays? 
What size shoes do the kids wear? 
What important business do we have on the calendar for this week? Or tomorrow? 
What code word did the school give us in order to pick the kids up in an emergency? 
How long can you keep a toothbrush before you should throw it away or donate it to science? 
When should you throw away food (or risk poisoning your family) despite the fact that technically it isn't the "SELL BY" date yet? 
Name one gift we ever gave to your grandmother since we met. 
How do you set the alarm clock? 
How does a calendar work? 
What is the only thing I ever asked for (and which I have never received) for my birthday? 
If you plan to travel with our kids, what goes in the suitcase?
What did I tell you that you simply MUST remember in case I suddenly die soon? 
How do you put up with me? 

Don't Read the Eeyore

There is so much good and beauty in the world. 

I can't see any of it. 

I am an eeyore. 

In the past 10 days:
I had a chest infection. Fever, night sweat, coughing spasm, blood.
The Rooster woke up one night around midnight vomiting profusely. 
The Peaches woke up with charley horses around 2. 
My husband caught the chest cold. 
Peaches caught the stomach flu. 
The Rooster hit his shadow. 
I caught the stomach flu. 
The shadow caught the stomach flu. 
The broker we hired to find us the car we need disappeared; a simple Toyota that matches our needs (can I hear a "THIRD ROW" amen please?!) cannot be located anywhere in the country. Our current 14-year-old, overtaxed Toyota limps along sadly, threatening to quit, and I can't blame it.  
A coworker seems determined to criticize me unfairly.
My husband ordered a new mattress to replace the 11-year-old one that sags miserably and hurts his back. The new - expensive - set came. It is toxic. I'd rather sleep in the Rooster's bed during his stomach flu, it smells that bad. 

And, don't think I didn't notice, there was a presidential election. I did, I swear, do my best to bask in it. I had all four computers in the house on abc, cnn, npr, and msn, and stole all the glances the kids would permit. I turned on the clock radio in the bed room and snuck in there each chance I got. The rooster, of course, did not allow me to watch any tv, but when I tried we at least had a moment of levity. He pointed to the screen and shouted, as he does on Sundays when I try to catch a Redskins score, "I DON'T LIKE FOOTBALL!" I told him, "Son, that is not football. That is about the president of the United States." I pointed to the screen, where images of both candidates looked back at us. He stamped his foot and proclaimed, "WELL, SHAME ON HIM!" And he turned it off. Fine, I have an iPhone, and his bedtime is 8, so eventually I got to bask some. Everyone else in the blogosphere wrote about the magic and power and significance of the night so much better than I can, but I shared the goosebumps, the tears, the  chills -- and this was not about my infection or flu. It was a moment of joyful hope. I still haven't come down from the news-binge every chance I get. I still revel in the history-making. I still feel heady and slightly anxious and very grateful. 

But I am still an eeyore, too. I still have the rest of the last ten days chewing on me, and it sometimes makes it hard for me to see the big picture of the goodness and the beauty all around. I am lame, and I know it, and I apologize for it. 

In the words of the rooster, Shame on ME. It's a good thing for me I'm not up for re-election. 

Tuesday, November 4, 2008

I'll Live

Have felt near death with this illness (flu?), and after major dysfunction on all levels around here, had been considering euthanizing my hopeless self... had been planning my bequest blog, in fact... 

(coughing attack...coughing attack...ack, ack, ack....)

But tonight, even I have to have hope. 

So I'm sparing you my drama (you're welcome), and I'm going to enjoy the drama with the happy ending in our country.

Yes, we can. 

(and thanks for the really nice comments and get well emails!)

Saturday, November 1, 2008


How ridiculous will I look if it's a cold that finally undoes me?
But it could happen. It could be my dimpled chad, the straw to my camel hump.
My COLD could be the thing that sends me to the hospital (medical) or the hospital (mental), or jail.
Sure, I have a bad cold, but my pride still rankles at the possibility of a cold doing me in, even if this cold comes with fever and likely infection. On the one hand, I feel so ABOVE a cold breaking me. On the other hand, I think at least some people -- some of YOU people -- will forgive me, will understand. You'll be able to tell people, in a mitigating way: Well, it went beyond just the cold. (As in, the death of a thousand paper cuts.) You can tell people: She really did put up a good fight, no matter how it might look.

Won't you?

Every single night when I am awake at 2 or 3 or 2:43 in the morning, I wonder how long a body can take it. And today, when 6 came and kids finally convinced me to rise after being awakened a handful of times, my body answered: No More.
This "cold" signifies a rebellion of my pudgy, hypervigilant, fatigued, underbathed, and assaulted mortal shell.
I have a cup of tea on the counter, a lozenge in my mouth, tissues in my pocket, Aleve in my system, soup in my belly, but I recognize I don't stand a chance. My immune system got up and left town in disgust months ago.
My next post will include important last words, goodbyes, and bequests; or, I will get some deep, satisfying, REM sleep.
Hmmmm, which one sounds unlikely?