The Child You Don't Want

I have had a cold since Friday afternoon. I spent most of the weekend in my big chair, while David and the kids brought me tea and the like. It hasn't been a bad cold, but because of a persistent cough, I wasn't able to sleep more than about an hour at a time, with hours of late-night TV in between. Last night, desperate to get some rest, I took a vicodin, and slept for about 6 hours.

Today, I felt more energetic, because of the sleep, but also kind of off and flaky because of the drug hangover. Or because of the combination of the drug hangover and the cold. Or something.

Anyway, many things happened today to remind me that I was not at my best. I loaded the dishwasher but discovered hours later I hadn't turned it on. I went to Hobby Lobby with a short list of supplies I needed for my next arigurumi project. In the parking lot, I spontaneously decided it was a good time to clean out some tissues and napkins and random bits of paper that had accummulated in the front seat and floor of my van. Only after I'd shoved the mess into a reeking garbage bin outside the store did I realize that I'd managed to crumple up my shopping list and toss it in there, too. I did OK, though I bought the wrong size crochet hook, and tomorrow I'll have to go back for one more skein of yarn.

And then, I took Word Boy and the Tiny Tornado to the bookstore after preschool, and it was only after we were out of the car and starting to walk toward the store that I realized I'd left the van running. I haven't done that since early in Word Boy's life, when I was seriously sleep-deprived from his round-the-clock nursing schedule. That time, I left it in gear, too, and it slowly drove itself into the garage door with Word Boy inside it.

My brain remains fuzzy and fragmented. And yet! I have resolved to write every day, so I will write something.

At the Festival of Faith & Writing, I heard Amy Julia Becker talk about her recent book, A Good and Perfect Gift. It's a momoir, in this case about Becker's daughter Penny, who was diagnosed with Down Syndrome shortly after birth. Becker was an excellent speaker. One of the things I like about the FFW is the opportunity it gives me to hear from people whose beliefs are very different from my own but who are thoughtful and self-aware. Becker is pro-life, and one of her concerns is the high rate of abortion of babies with Down Syndrome; she said that just over 50% of babies who are diagnosed with Down Syndrome are aborted now. She also talked about some recently-developed blood tests that can allow the detection of chromosomal abnormalities early in pregnancy and without risky and invasive procedures like amniocentesis, which she expects to increase that percentage.

If everyone who was pro-life were like Becker, though, we'd have a very different conversation about abortion taking place in America. During the Q&A, an audience member asked, with great intensity, "What do you do if you encounter a woman who is thinking of aborting her baby with Down Syndrome?" Her tone suggested to me that what she really wanted to know was how to stop her.

Becker said that she thinks many families fear having a baby with Down Syndrome because they don't have a good understanding of what these children are likely to be like, what they might be capable of, what good qualities they are likely to have. She thinks it's too bad that most people probably don't know any families with Down Syndrome kids, that they don't have a model of what is both positive and challenging about raising these kids. So, she said, if the woman is open to it, you might offer her some information, or some opportunities to meet some families raising Down Syndrome kids. She thinks that if more people knew more about Down Syndrome, they'd be more willing to raise these kids.

But, she said, the most important thing is to be compassionate, because this woman is disappointed, and probably frightened, and facing a hard choice. And, she said, ultimately, you have to respect that it is her choice to make, and refrain from judgment or any words or actions that will add to her burden.

Well. Rock on, Amy Julia Becker.

In her response to another question--I don't remember the question--Becker said that someone had told her once thats having a child born with an obvious disability is not that different from having any old ordinary baby. "You just find out that much sooner that you got the child you didn't want."

Every parent in the audience chuckled and nodded knowingly.

I think most parents have to deal, at some point, and to a greater or lesser extent, with figuring out that there is something they were hoping for from parenting that they're not going to get. My friend Farina Endfen is a tough, authority-defying, mess-loving type of person. She looked forward to mucking through swamps with her son, catching frogs and lizards, and looking under logs for crawly things. Her son, it turns out, doesn't so much care to be outside, or to get messy that way. In the realm of parental disappointments, this is a small one. But it requires mindfulness to negotiate nonetheless--the awareness that your child is an autonomous person and not your pet or your doll, the willingness to accept the differences between you, to support your kid in being the kid he is, to manage your own disappointments, large or small, and not expect your child to carry that burden for you.

David and I sometimes joke that parenting the Tiny Tornado is a great blessing because she completely strips away any illusion we might have had that we were in control, that we could "instill" our children with certain virtues or interests. I remember saying to my friend Carolyn, back when the Tornado was maybe 2, that I was having to learn a whole new parenting style with her. Carolyn said, "Detachment?" And she was right.

Today I was reminded--not that I needed to be--that you don't always get what you want. I have this vision of what it is like to take kids to the bookstore; they browse contentedly, they choose a book or two, we pay our bill, they start reading in the car on the way home. Because I love books and I want my kids to love them, too.

Some of this happens. They choose books; we pay for them; they start reading on the way home. Recently the Lego Savant has begun tearing through a series of novels, staying up late to read, spending the whole of a day caught up in a book. I'd have been perfectly happy with him if this had never happened--but I'm glad it did. I hoped I would have at least one kid who was, at least some of the time, a voracious reader.

But bookstore trips never go the way I picture them in my mind. The Lego Savant didn't come to the bookstore with us; he knew exactly what books he wanted (#8 and #9 in the Ranger's Apprentice series, and he was happy to have me pick them up for him). Word Boy wanted a manga, either a Warriors graphic novel or a Legend of Zelda book. The store was sold out of most of the Warriors graphic novels, but he hadn't read the one they had in stock, so he chose that.

The problem started when the Tiny Tornado chose the same book.

Obviously, she can't read it. But she loves to look at the pictures and make up her own story about what's happening, and she loves to have the same kinds of books her older brothers do. It gives her tremendous pleasure. And my philosophy of book selection is that kids should pretty much be able to choose whatever book they want; we will steer them away from books that have content we think might be uncomfortable for them (no suspense novels for the Lego Savant!) and if they ever headed for something I thought was truly inappropriate, I'd steer them elsewhere. But I'm not going to say nay just because she chose a book she can't actually read yet.

Anyway, Word Boy fell to pieces. He had been sitting on a couch in the kids' area, reading his book and waiting for us to make up our minds, and when he saw what the Tiny Tornado had chosen, he had a fit. He went boneless, and fell onto the couch. He began to shudder and "huff"--breathing rapidly and making little noises. It's an anxiety attack.

Why? Several reasons:

1. He did not want the Tiny Tornado to choose the same book he did, because that makes it not special

2. It is #3 in a series and she had not "read" #1 or #2; reading the books in order is very important.

3. She can't even read it!

4. If she just wants to look at the pictures, the Zelda manga have much better illustrations for that.

5. The Lego Savant might try to get her to give him the book, and she might agree, and sthen she might change her mind and then there might be a big fight (this is such a typical scenario that I told her I would buy her that book on the condition that she under no circumstances give it away to her older brother).

How do I handle this kind of thing? I said, "No. You can't do that here. If you can pull yourself together to walk to the checkout, I will buy that book for you. If you can't behave appropriately, I will put that book back on the shelf."

He huffed and shuddered and whined.

I said, "The Tiny Tornado and I are going to the checkout. If you can pull yourself together to come with us, I will buy the book."

And so the Tiny Tornado and I headed to the checkout, and after a moment Word Boy got off the couch and followed along.

As we walked to the car, he said, "I really felt like everything was going to be horrible, but it's not really horrible at all."

I said, "Yes. Your anxiety likes to tell you those kinds of lies. But usually the horrible thing doesn't happen, and if it does, it's not as horrible as you expected, and even if it's pretty bad, you often find out that you can deal with it."

It's very draining, even now that I've learned that not engaging is the fastest route to the end of the fit, and am not letting myself be sucked into it with him. It would only have been worse if the Lego Savant had been there, because he gets embarrassed when Word Boy does this kind of thing in public and jumps into his own anxiety-management mode, which is the effort to control everything around him, starting with Word Boy, and then to use his dissatisfaction with the present moment as a jumping-off point to complain about everything that bothers him about his siblings, me, our home, our yard, his life.

It's extra-hard when their issues feed on each other. You should see them some days, doing seatwork at the dining room table. The Lego Savant has aversions to many sounds and smells, and depending on his general mood and how strained his resources have been, he can be driven mad by Word Boy's breathing or the scratch of his pencil. But, in typical Lego Savant fashion--"flexible" not being a word one would readily apply to him--he will refuse such obvious solutions as taking himself to work in his bedroom. Meanwhile, the Lego Savant likes to talk quietly to himeself as he works, especially when he's solving math problems, and this drives Word Boy crazy because it can be challengings trying to solve your own math problem when someone is sitting across from you muttering, "5 and 8 is 13, carry the one, so that's 60, 63, OK..."

I have been known, on occasion, to point out to them that if they were in school, they'd be in a room of 20-30 kids, all of whom would be breathing, many of whom would have scratchy pencils, some of whom would be congested and making gross sniffling noises, and that they themselves would be discouraged from muttering, from drawing little monsters in the margins of their math workbooks, from getting up for a snack to help them concentrate ("Mom! Why does he have to crunch like that?"). It falls on deaf ears; they both want the problems between them to be solved by the other one changing his behavior. I have made little headway in getting them to see the options that are available to them in terms of modifying their own behavior.

I didn't mean to sound whiny. This is all one of the pieces that's hard, a problem I continue to delude myself that I should be able to solve. If I could just open their brains and pour in what has taken me decades to learn about living with and managing anxiety and inflexibility and sensitivity! I want it to be easier for them than it was for me, and I want it to be easier for them than it is. I always thought that if I were the right kind of parent, it would be.