Autism and God?

I don’t believe in a god. But I believe in heritage, and connection. I like knowing that I am a part of something that reaches back a few thousand years. I also like the stories in the Torah. I like that my ancestors tried to make sense of the world by imposing a moral order, and rules of ethics among other things. I love the songs, and I used to take great comfort in the rituals.

When I was a child, I believed absolutely in God as He was described in the Torah and the Talmud. I believed that my parents were making a dire mistake by not keeping Kosher, by not keeping Shabbat as a holy day of prayer and rest. (Don’t even get me started about my religious outrage over their divorce!) I believed that peace and harmony in the home could be accomplished by following the laws, by making one’s best effort to fulfill the 613 Mitzvot. I wanted to be a Rabbi … until I found out that the Orthodoxy didn’t allow for women to be rabbis.

Once I left the Orthodox school which I was, for some reason, attending, I became pretty cynical about God and religion. I didn’t practice it, but I didn’t think much about it either. The world just didn’t match up with what the rabbis had taught me. So, I let it go.

After my tumultuous teens and young adulthood, I came back to Judaism — not because I believed again, but because I could connect to Reconstructionist Judaism. I could have my rituals back and I could make sense of them. A decade later, though, I gave it up again.

It’s not that it’s difficult to follow the laws or go through the rituals. I really enjoyed them. It’s that I realized the prayers I was singing were absolutely false. I didn’t believe that there was a deity that cared whether or not I was thankful or found the creation something praiseworthy. I didn’t — and don’t — believe I should have to kiss the ass of a supreme being in order to please that being. I mean, how much praise does one supernatural creator need, anyway?

So, I stopped going to services. I stopped doing the Shabbat candles and wine. I stopped trying to make a decent challah.

My husband was already a tremendous cynic. He stopped believing in a god a long time ago. I’m pretty sure it was around the time of our daughter’s diagnosis.

Now, however, I see this Judaism and belief system as a kind of birthright. Sure, I don’t believe. But maybe my daughter could. Maybe it would be best for her to have that assured moral compass and ethical guide. After all, I don’t know how she will come to understand this business of right and wrong without religion. She’s not exactly one for expressing deep thoughts.

She’s nine years old now, and shockingly, I am absolutely sure — rock solid positive — that I want her to have a Bat Mitzvah.

My husband — not so much. He believes this would be a waste. She doesn’t have a concept of God. She won’t be able to truly take on the religious responsibilities a Bat Mitzvah implies. And we don’t practice religion at home.

I am arguing with him. I think she can be made ready. She can learn. And, if that’s what it takes, we can practice more Judaism at home. Reluctantly, my husband is willing to let us try to get this religion thing going again. But he’s pretty stubborn. He says he won’t even discuss a Bat Mitzvah for another three years. In the meanwhile, Phoebe and I have a lot of work to do.

So, tomorrow: Phoebe Ruth starts Hebrew School. Wish us luck. Or, you know, pray for us?

Serendipity?

This is probably a kind of tantrum on my part. And I’m sorry if that offends you, dear reader. But I’m unable to say these things aloud, and I am sure I am not the only one. So take what you read with a grain of salt, and understand that no one escapes pain. No one:

My daughter is becoming a beauty. This is the scariest thing I’ve ever faced, bar none. She is far from adolescence — not even 10 years old. But she has grown these long, thin legs, an almost concave stomach, small breasts, and the face of an angel. I never looked like this. I look at pictures of myself as a girl, and I was cute, sure. But this — no. This is beauty.

At first, I thought this idea of my daughter as something special to look at was in my very biased motherly head. It’s not. People I barely know, strangers even, stop to tell me how pretty she is. I thank them, but I’m not grateful.

Now, when I was pregnant, I very much wanted a boy. I know, it’s terrible, but there it is. I didn’t want to deal with periods, and unwanted hair in weird places, and especially I didn’t want to either subject my child to or see her become a mean girl. Everyone told me boys were easier. Sexist propaganda no doubt. Of course, being a Jew, having a girl meant I didn’t have to wrestle with circumcision. (I think I’m against circumcision, but oh man would that have been a battle ROYALE in my house.) So there was my consolation prize.

Then I thought about all I could do as my daughter’s mother to make sure she DIDN’T go through all the horrors I faced. At least, she wouldn’t have to deal with the handicaps I had. I would not let my marriage fail (so far so good). I would not become an alcoholic (no chance of that — the stuff gives me migraines). I would not be broke (so far so good). I could even help my daughter be popular. I could be the kind of mom who made our house the kids’ favorite place to hang out! I could… BAKE COOKIES!

I had a wonderful baby shower; all these cute little outfits were given to my daughter. A woman I barely knew designed and sewed a beautiful blanket wrap. It was around that time I realized that I could do for my daughter what no one had done for me. I could come just this close to spoiling her, and her life would be charmed.

She would not be constantly embarrassed, shamed, guilt-ridden, sorry for herself. She would have friendships I would encourage. My daughter would have the stability and nurturing that my life had lacked. And, as a result, she would be blessed with self-assurance, self-confidence, and the rock-solid knowledge that she always had the means to get what she needed.

Ten years later and I have a daughter who is delightful, playful, funny, and gorgeous. (I mean, even her hair is better than mine ever was. I have unruly, frizzy, curling in all the wrong places hair. My great-aunt used to tell me I looked like Janis Joplin. Hers is thick, straight, shiny, and smooth. She doesn’t even get split ends!)

When her father or I yell at her over something she should have known better than to do or not do, she negotiates her punishment with us. She talks back and laughs at me when I am being unreasonable. She even laughs at her father’s temper tantrums. These are things I never did.

She has a beautiful home, with land and great schools, and every toy she ever wanted — almost. She has a dresser full of clothes, washed, dried, folded, and organized. She has technology at her fingertips all the time. She has a mom who helps her with her homework every day. She even has good and loyal friends.

But she has autism.

And the more beautiful she gets, the more all my prayers for her are answered, the worse it gets. She has no sense of shame. She’ll strip off her clothes any time and anywhere. I have to remind her to go to the bathroom. If I don’t, she’ll walk around with wet or poopy pants. She can’t tell me what happened during the times I wasn’t with her, so I don’t have any way of knowing if anyone said or did something to hurt her. She elopes — just wanders off if she’s bored or something grabs her attention from far away. She is so goddamn vulnerable!

She’s not vulnerable to the mean girls the way I was because she doesn’t recognize the sarcasm or insults that will most certainly come her way. She’s not worried about money or the future because she doesn’t understand how money works or what a bleak future might look like. She doesn’t even understand the differences between the past, present, and future.

There are so many deficits. And although I do not believe in a god, I sometimes think about the ancient myths and the lessons they tried to teach. I think about the jealous gods of Greece and Rome, and I wonder every now and then if all my prayers were answered just to show me how stupid, prideful, vain, and/or selfish, and/or fill-in-the-adjective-here those prayers really were.

Meanwhile, one of my dearest friends in the world, who has raised perfectly normal and lovely children, is watching her son battle a bone cancer that has now spread to his lymph node. When she broke the news that her son had cancer, the first thing she said to me was that this was NOT because she smoked. I see her wonder if she is somehow at fault. She is terrified, and I can do nothing to help her or her wonderful son.

I’d give anything to know if there were some supreme being who tortures children for their parents’ mistakes. Because if there is a god who chooses to kill children or disable them or cause them pain, I would preach against it. I would call for a rebellion. I would spit in his eye.

Baby loves the rain

My baby, my almost 10 year old baby, loves everything to do with water, and I have just finished an epic battle to keep her — relatively — safe and dry.

First, my husband and I put together this blow-up water slide that we purchased two years ago. It’s huge, unwieldy, and had been collecting dust and bugs in the shed in the backyard since the beginning of autumn two years ago. But since we were expecting two little kids to visit us — with their parents — the next day,  and the temperature had been just shy of 90 degrees all week, we decided it was time to haul the thing out again. 

We had just come home from a nice meal at a local restaurant where I had some wine. It was probably the half bottle of Pinot Grigio in me, but I decided to go for it. I pulled that sucker out and almost all the way up the hill before the cart tipped over. I slid down the hill, trying to keep both my balance and the deflated slide in its wheelbarrow. This thing is huge. 

The love of my life finally came outside  to  help me, and we set the slide up on the grass in the backyard.  We found the neglected blower in  the garage, and filled the slide with air. As the monstrous toy took shape, looming over our heads at eight feet tall, we saw the mildew and the bugs. Undaunted, we tested the water, and the little hoses that squirt water all over the thing bubbled over without incident. But the dirt, spider webs, dead bugs, dried leaves, and probably some viral mold totally disgusted us. Why did we ever buy this thing?

As my husband hosed the slide down in the vague hope that this would at least begin the cleaning process, I went back inside to check on our little monster (if  you leave her alone in the house, she will eat the dog and/or cat food, pour the flour out onto whatever surface is available,  break eggs on the floor, and/or poop in her pants). 

My girl, seeing the water slide outside through the window onto the backyard, started to strip off her clothes while simultaneously playing on the computer in the office. She could see the waterside taking shape through the window, and immediately slipped off her sandals and started pulling at her dress. “Pheobe,” I interrupted her, “it’s too late now to go on the water slide. We have to wait until tomorrow,” I waited for her to acknowledge me — with a glance in my direction, maybe even a verbal response. I waited in vain. However, she seemed to understand because she stopped pulling off her clothes.

Then she turned to me in earnest, and exclaimed “We have to go to sleep!” 

OK, I was sure that meant she understood that going outside to play on the blow-up waterslide at 8:30 PM was not on the schedule.  Satisfied that I had successfully thwarted a tantrum in the making, I returned outside to help clean the slide. We were arguing about what methods to use (I wanted to use detergent, but my husband insisted the sun alone would disinfect the thing, and then we would just hose it off some more), when  I noticed storm clouds and soft thunder in the air. “Maybe this will take care of it,” I suggested. “Oh, I don’ t think it’s really going to rain tonight,” replied my amateur meteorologist of a spouse. 

As a precaution, because she cannot be left alone, we went in the house and called for Pheobe.  She was nowhere to be found. I noticed that the front door was open, but when I stepped out front and called for her, I didn’t hear or see her. Great. Did I get the battery changed in time for her GPS device to be of any use when we call the police? Well, but maybe she wasn’t outside. I noticed a light on upstairs. As I ran up the stairs, my husband found our daughter  outside, heading along the side yard to  … you guessed it, the waterslide. She was completely naked. Upstairs I found her dress and panties on the floor of her bedroom.

As her father escorted our Lady Godiva back inside, she called up the stairs to me: “Time for a bath!” Well, she was already naked, and obviously eager to get the night over with so she could climb up her waterslide. I gave a shrug and helped my girl shower, then get in a nightshirt and panties. 

Just as we were finishing up, the storm hit. It was a glorious storm, with pounding rain and lots of thunder and lightening. 

Phoebe ran to our bedroom where there is a balcony (with no roof). She tried to get the door open while I was literally running after her from her bathroom (how did I ever get so fat with all this running after my daughter? Oh, right — the Pinot), and I put a stop to the balcony exploit.

Of course then my lovely girl threw a small tantrum — she really loves ANYTHING with water, and that includes the rain. Thunderstorms are exciting to her, and Mommy was not going to stop her. 

So, I took  her outside under the front porch roof to look at the rain and lightening, and to listen to the thunder while staying dry. We saw a frog hop along the front walk. It seemed so peaceful. Almost idyllic.  Pheobe  and I sat on the front porch rocking chairs, and rocked in contentedness. Well, I did.  Every two minutes or so  Pheobe would jump up and try to run out into the rain:

“We have to climb the flower tree!” 

No.

“We have to WAIT for the thunder!” 

Yes. 

“We can walk on the path?”

No.

“Climb the tree!” 

No. 

“Auugghh!!!”

No yelling.

“Do you want to walk on the path?”

No. Let’s rock on the rocking chair together.

We counted between the thunder and lightening, and I tried to pass on the ancient childhood wisdom someone must have told me a million years ago — “That’s how many miles away the storm is,  Pheobe!”

“We have to WAIT for the thunder!”  

 I could tell she was humoring me at this point.. She just wanted to be out there.

“We can put on our Crocs and go on the path.” 

No. 

“We will go to sleep and put on our Crocs in the morning.” 

Yes.

Finally, the rain died down a bit, and I got through this battle to keep my daughter out of a full blown thunder and lightening storm raging outside our house. It was a victory of sorts. I didn’t lose my temper or even my patience, for once. And Pheobe was relatively dry at the end of the night.

We got upstairs only after I turned on for her a Diego episode, promised her the waterslide tomorrow, and had given her two dolls to watch Diego with her. An hour later, I finally got my little water baby to bed.

There are days when I need the other half of that bottle of Pinot. This was one of them.

We are not alone.

I read blogs from time to time — it’s not like an obsession or anything, but I read them. And before I did, I thought the only parents who really, REALLY published about parenting kids on the spectrum — kids with autism — were parents of boys.

Boys, I hear, are four times more likely to have autism than girls. So, it makes sense that I don’t see a whole lot out there about girls who self-stimulate, perseverate, freak out over a a particular noise or smell or texture or whatever, cannot seem to understand how language works to communicate with others, cannot process what people say, sleep in bizarre patterns, take for-freaking-ever to toilet train — if it ever works at all, and, well, all of it.

My girl is almost ready to start menstruation. She is still pooping in her underwear, but here’s a good joke: Girls on the spectrum, my pediatrician tells me, tend to get their periods EARLY! Is that not amazing? Either there is no god, or God is a male with a sick sense of humor. Blasphemous, I know, but since my daughter was diagnosed, I’ve slowly but surely become an atheist.

What plan could possibly excuse the suffering of two year old children? Because that’s what happens — these kids suffer. They have to teach us how to communicate with them, how to develop a relationship with them. The poor little wretches just wear us out, because we have no clue.

They are in no position to tell us: Hey! “Time out” won’t work because I can spend an hour or two happily watching molecules over here.

They can’t tell us: I am not hard of hearing or actively ignoring you, so stop raising your voice!

They can’t explain what is making them scream with their hands over their ears while they spin on their backs in the parking lot in front of Walmart.

Yeah, I always knew innocent children suffered in the world. Somehow, I managed to keep my distance just enough to keep believing in some benevolent force in the world. No more.

Anyway, that’s why I’m here. To assert that we are here, we mothers and fathers and aunts and uncles of girls with autism. I’m here with you. In fact I’ve been around for quite a while. But now, I am ready to share our story.

Thanks for reading. Please comment, because I love comments.