House Rules (6 page)

2

Emma

I used to have friends. Back before I had children, when I was working at a textbook publishing company outside of Boston, I‘d hang out with some of the other editors after hours. We‘d go for sushi, or to see a movie. When I met Henry he was a technical consultant on a computer programming textbook my friends were the ones who encouraged me to ask him on a date, since he seemed too shy to ask me. They leaned over my cubicle, laughing, asking if he had a Superman side underneath all that Clark Kent. And when Henry and I got married, they were bridesmaids.

Then I got pregnant, and suddenly the people I could relate to were enrolled in my birthing class, practicing their breathing and talking about the best deals on Diaper Genies. After we had our babies, three of the other mothers and I formed a casual playgroup. We rotated hosting duties. The adults would sit on the couch and gossip while the babies rolled around on the floor with a collection of toys.

Our children got older and started to play
with
each other instead of
beside
each other. All of them, that is, except Jacob. My friends‘ boys zoomed Matchbox cars all over the carpet, but Jacob lined them up with military precision, bumper to bumper. While the other kids colored outside the lines, Jacob drew neat little blocks in a perfect rainbow spectrum.

I didn‘t notice, at first, when my friends forgot to mention at whose house the next playgroup was taking place. I didn‘t read between the lines when I hosted and two of the mothers begged off because of previous engagements. But that afternoon, Jacob got frustrated when my friend‘s daughter reached for the truck whose wheels he was spinning, and he hit her so hard that she fell against the edge of the coffee table. I can‘t do this anymore, my friend said, gathering up her shrieking child. I‘m sorry, Emma.

But it was an accident! Jacob didn‘t understand what he was doing!

She stared at me. Do
you
?

After that, I didn‘t really have friends anymore. Who had time, with all the early intervention specialists that were occupying every minute of Jacob‘s life? I spent the entire day on the carpet with him, forcing him to interact, and at night I stayed up reading the latest books about autism research as if I might find a solution that even the experts couldn‘t. Eventually, I met families at Theo‘s preschool who were welcoming at first but distanced themselves when they met Theo‘s older brother; when they invited us for dinner and all I could talk about was how a cream of transdermal glutathione had helped some autistic kids, who couldn‘t produce enough of the substance themselves to bind to and remove toxins from the body.

Isolation. A fixation on one particular subject. An inability to connect socially.

Jacob was the one diagnosed, but I might as well have Asperger‘s, too.

When I come downstairs at seven in the morning, Jacob is already sitting at the kitchen table, showered and dressed. An ordinary teenager would sleep in till noon on a Sunday Theo will, certainly but then again, Jacob isn‘t ordinary. His routine of getting up for school trumps the fact that it‘s a weekend and there‘s no urgency to leave the house.

Even when it is a snow day and school is canceled, Jacob will get dressed instead of going back to bed.

He is poring over the Sunday paper. Since when do you read the paper? I ask.

What kind of mother doesn‘t want her son to be aware of current events?

Yeah, I‘m not falling for that one. Let me guess you‘re clipping Staples coupons for Krazy Glue? Jacob goes through that stuff like water; it‘s part of the process used to get fingerprints off objects, and it‘s a common occurrence in this household for something to go missing my car keys, Theo‘s toothbrush and then to resurface beneath the overturned fish tank Jacob uses to fume for prints.

I measure out enough coffee into the automatic drip to make me human and then get started on breakfast for Jacob. It‘s a challenge: he doesn‘t eat glutens and he doesn‘t eat caseins basically, that means no wheat, oat, rye, barley, or dairy. Since there‘s no cure yet for Asperger‘s, we treat the symptoms, and for some reason, if I regulate his diet his behavior improves. When he cheats, like he did at Christmas, I can see him slipping backward stimming or having meltdowns. Frankly, with 1 in 100 kids in the United States being diagnosed on the spectrum, I bet I could have a top-rated show on the Food Network:
Alimentary Autism.
Jacob doesn‘t share my culinary enthusiasm. He says that I‘m what you‘d get if you crossed Jenny Craig with Josef Mengele.

Five days of the week, in addition to having a limited diet, Jacob eats by color. I don‘t really remember how this started, but it‘s a routine: all Monday food is green, all Tuesday food is red, all Wednesday food is yellow, and so on. For some reason this helped with his sense of structure. Weekends, though, are free-for-alls, so this morning my breakfast spread includes defrosted homemade tapioca rice muffins, and EnviroKidz Koala Crisp cereal with soy milk. I fry up some Applegate Farms turkey bacon and set out Skippy peanut butter and gluten-free bread. I have a three-inch binder full of food labels and toll-free numbers that is my chef‘s Bible. I also have grape juice, because Jacob mixes it with his liposome-enclosed glutathione one teaspoon, plus a quarter teaspoon of vitamin C powder. It still tastes like sulfur, but it‘s better than the previous alternative a cream he rubbed on his feet and covered with socks because it smelled so bad. The downside of the glutathione, though, pales in comparison to its upside: binding and removing toxins that Jacob‘s body can‘t do itself, and leaving him with better mental acuity.

The food is only part of the buffet.

I take out the tiny silicone bowls we use for Jacob‘s supplements. Every day he takes a multivitamin, a taurine capsule, and an omega-3 tablet. The taurine prevents meltdowns; the fatty acids help with mental flexibility. He lifts the newspaper up in front of his face as I set down the two treatments he hates the most: the oxytocin nasal spray and the B12 shot he injects himself, both of which help with anxiety.

You can hide but you can‘t run, I say, tugging down the edge of the newspaper.

You would think that the shot is the worst for him, but he actually lifts up his shirt and pinches his stomach to inject himself without much fanfare. However, for a kid who‘s got sensory issues, using a nasal spray is like waterboarding. Every day I watch Jacob stare down that bottle and finally convince himself he will be able to handle the feeling of the liquid dripping down his throat. And every day, it breaks my heart.

It goes without saying that none of these supplements which cost hundreds of dollars each month are covered by medical insurance.

I put a plate of muffins in front of him as he turns another page in the paper. Did you brush your teeth?

Yes, Jacob mutters.

I put my hand down on the paper so that it blocks his view. Really?

The few times Jacob lies, it‘s so obvious to me that all I have to do is raise an eyebrow and he caves. The only times I‘ve ever even seen him attempt dishonesty are when he‘s asked to do something he doesn‘t want to do like take his supplements or brush his teeth or to avoid conflict. In those cases, he‘ll say what he thinks I want to hear. I‘ll do it after I eat, he promises, and I know he will. Yes! he crows suddenly. It‘s in here!

What?

Jacob leans over, reading aloud. Police in Townsend recovered the body of fifty-three-year-old Wade Deakins in a wooded area off Route 140. Deakins succumbed to hypothermia. No foul play was indicated. He scoffs, shaking his head. Can you believe that got buried on page A fourteen?

Yes, I say. It‘s gruesome. Why would anyone want to read about a man who froze to death? I suddenly pause in the act of stirring half-and-half into my coffee. How did you
know
that article was going to be in the paper this morning?

He hesitates, aware he‘s been caught in the act. It was a lucky guess.

I fold my arms and stare at him. Even if he won‘t look me in the eye, he can feel the heat of my gaze.

Okay! he confesses. I heard about it on the scanner last night.

I consider the way he‘s rocking in his seat and the blush that has continued to work its way up his face. And?

I went there.

You
what
?

It was last night. I took my bike

You rode your bike in the freezing cold to Route 140

Do you want to hear the story or not? Jacob says, and I stop interrupting. The police found a body in the woods and the detective was leaning toward sexual assault and homicide

Oh my God.

but the evidence didn‘t support that. He beams. I solved their case for them.

My jaw drops. And they were
okay
with that?

Well … no. But they needed help. They were totally going in the wrong direction given the wounds to the body

Jacob, you can‘t just crash a crime scene! You‘re a civilian!

I‘m a civilian with a better understanding of forensic science than the local police,

he argues. I even let the detective take the credit.

I have visions of the Townsend Police showing up at my house today to berate me (at best) and arrest Jacob (at worst). Isn‘t it a misdemeanor to tamper with a police investigation? I imagine the fallout if it becomes public knowledge that Auntie Em, the advice expert, doesn‘t even know where her own son is at night.

Listen to me, I say. You are absolutely
not
to do that again. Ever. What if it
was
a homicide, Jacob? What if the killer had come after
you
?

I watch him consider this. Well, he says, entirely literal, I guess I would have run really fast.

Consider it a new house rule. You are not to sneak out of here unless you tell me first.

Technically, that wouldn‘t be
sneaking,
he points out.

Jacob, so help me

He bobs his head. Don‘t sneak out to go to a crime scene. Got it. Then he looks directly at me, something that happens so infrequently I find myself catching my breath.

But, Mom, seriously, I wish you could have seen it. The crosshatch marks on the guy‘s shins and

Jacob, that
guy
died a horrible, lonely death and deserves a little respect. But even as I say it, I know he can‘t understand. Two years ago, at my father‘s funeral, Jacob asked if the casket could be opened before the burial. I thought it was to say good-bye to a relative he‘d loved, but instead, Jacob had put his hand against my father‘s cold, rice-paper cheek.
I just want to know what dead feels like,
he had said.

I take the newspaper and fold it up. You‘ll write a note to the detective today apologizing for getting in his way

I don‘t know his name!

Google it, I say. Oh, and you can consider yourself grounded until otherwise notified.

Grounded? You mean, like I can‘t leave the house?

Not unless you‘re going to school.

To my surprise, Jacob shrugs. I guess you‘ll have to call Jess, then.

Dammit. I‘ve forgotten about his social skills tutor. Twice a week, Jacob meets with her to practice social interaction skills. A graduate student at UVM who plans to teach autistic kids, Jess Ogilvy is terrific with Jacob. He adores her, just as much as he dreads what she makes him do: look cashiers in the eye, initiate conversation with strangers on the bus, ask bystanders for directions. Today they have planned to visit a local pizza parlor so that Jacob can practice small talk.

But in order to do that, he‘ll have to be allowed out of the house.

Muffin? he asks innocently, handing me the platter.

I hate it when he knows he‘s right.

Ask the mom of one autistic kid if vaccines had anything to do with her child‘s condition, and she will vehemently tell you yes.

Ask another, and she‘ll just as vehemently tell you no.

The jury‘s still out, literally. Even though a handful of parents have sued the government alleging that vaccinations caused their children‘s autism I haven‘t gotten my class action suit check in the mail, and I‘m not banking on it.

Here are the facts:

1. In 1988, the Centers for Disease Control recommended a change to infant immunizations schedules in America, adding three hepatitis B shots (including one at birth) and three haemophilis B shots, all given before the baby is six months old.

2. Drug companies stepped up to the challenge by providing multiple-dose containers of vaccines preserved with thimerosal, an antibacterial made up of 49 percent ethyl mercury.

3. Although the effects of mercury poisoning had been identified in the 1940s, the Food and Drug Administration and the CDC didn‘t consider the effects of the dosage that newborns would receive because of these shots. The drug companies didn‘t raise a red flag, either, even though the new regimen meant an average two-month-old at a well-baby checkup got a single-day dose of mercury one hundred times greater than the government‘s long-term safe exposure level.

4. The symptomology of autism looks an awful lot like the symptomology of mercury poisoning. To give you an example: when scientists studied the migration of mercury into primate brains, they noticed that the primates began to avoid eye contact.

5. Between 1999 and 2002, thimerosal was quietly removed from the majority of childhood vaccines.

There‘s the opposing argument, too. That ethyl mercury the kind in the vaccines leaves the body faster than methyl mercury, the kind that is a poison. That in spite of the fact that most vaccines are now mercury-free, autism is still on the rise. That the CDC, the World Health Organization, and the Institute of Medicine completed five large studies, none of which have found a link between vaccines and autism. Those facts are compelling, but the next one is all I needed to convince me there‘s some sort of connection: 1. My son looked like any other two-year-old until he had a round of shots that included DTaP, Hib, and hepatitis B.

I don‘t think it‘s a causal link. After all, out of 100 children receiving the same vaccine schedule, 99 will never become autistic. But just like we probably all have markers for cancer in our genes, if you smoke two packs a day you‘re more likely to develop it than if you don‘t. Kids with a certain predisposition in their genes can‘t get rid of mercury as easily as most of us can and, as a result, wind up on the spectrum.