“It’s the sound of the unlocking and the lift away / Your love will be / Safe with me”

He recognizes my footfall. He can be awake in his crib for an hour, resting peacefully through absolute cacophony upstairs, but the moment he hears me walk across the floorboards in the living room above his head, he cries out.

I once remarked that he hugs me like he’s Princess Leia and I’m Han Solo and I’m about to be frozen in carbonite and he doesn’t know if he’ll ever see me alive again. On more than one occasion I have joked, when he grabs me by the legs or snuggles into my lap, that he needs to learn he can’t climb back inside me.

About a month and a half ago, he broke my glasses. He’d gotten into the annoying habit of slapping them off my face as I loaded him into his car seat. He really wanted those glasses off of me. He would then look at me fondly and caress my cheek, as though he hadn’t seen my face, my real face, in ages. I think it was a weaning thing. When he nursed, even when he was a very small baby, he wanted to make constant eye contact. Gazing at me in wonder.

I don’t think anyone in the world has ever loved me as much as he does.

I am constantly afraid that something horrible is going to happen to him. A freak accident, when he’s just out of my sight. Awful scenarios, running through my head, all the time. I read the Phillippa Gregory book “The White Queen” last week, and the closer I got to the ending I knew was inevitable, that the queen’s sons would be taken to the Tower of London and never come back out, the more white-knuckled my grasp of the library binding became. My New Year’s resolution this year (and I never make resolutions, so this was big for me) was to stop reading things on the internet that would upset me. True crime, houses burning down with children inside them, longreads about child pornography sting operations. And yet somehow last night I found myself reading the Ted Bundy wikipedia page, half-convinced that there was a serial killer downstairs silently strangling my children and on his way to kill me too. I don’t know if this is normal. I kinda assume that it is and it isn’t. All I know is that I love my children far more than I love myself and I live in constant terror of something horrible happening to them.

So I just don’t understand.

I understand why people, in the comments of some articles I have been unable to pull myself away from of late, want to offer up some small bit of empathy or sympathy to a mother who feels pushed to the breaking point, who feels alone, without support, without hope. I get why people want desperately to create some sort of context, to help prevent, to try to understand.

But I will never understand.

I will never understand how someone could try to kill their child.

I can empathize with Dorothy Spourdalakis right up until she gave her son sleeping pills and then stabbed him in the heart.

I can empathize with Kelli Stapleton right up until she lights the grills in the back of her van.

And then my empathy is gone. And then my compassion disappears.

My son is not autistic, but my daughter is. The emotional abundance I receive from E is not as readily accessible from D a lot of the time. But I have no doubt she loves me. She is able to show me that, through words and deeds. She always has. I don’t know enough about Alex Spourdalakis or Issy Stapleton to speak to their capacity to express connection with their parents. All I know is what the media narratives tell me. They were large, and violent. They were locked in, in their own worlds, a burden. Nevermind reports, firsthand reports I’ve read, from people who have met these kids, seen them talk, seen them play. I do not doubt that these children were more difficult to deal with, on many levels, than my own. But they are your children. They trust you, completely, inherently, from birth. Your job as a parent, more than anything else, is to love and protect your children. Their lives are not yours to dictate. You have no right to decide when and how they will die. When the language we, as a society, use to describe autistic people is language that is othering, dehumanizing, we set up a stage for this to keep happening. When you see your children as a burden, as a curse, as people trapped inside a shell of an illness, as props in your play…that’s the only way I can understand such acts. And with that I cannot, will not, empathize.

When D was a baby, I was shellshocked. I felt an immediate connection with her when she was first placed on my chest, but in the weeks that followed I felt that connection crumble. She was a voracious nurser, wanted to eat constantly, wouldn’t sleep anywhere that wasn’t a lap or a shoulder or a busom. But she wouldn’t tolerate a wrap or a carrier. When I tried to strap her to me so I could accomplish something, anything, she wrestled against me and screamed. Once we got her on some reflux medicine, things got better. But there was still a constant struggle within her that I could perpetually see — her desire to be close to me, so I could nourish her, but simultaneously shuddering and clawing away from confinement. The fervent and almost obsequious love that my son showers me with…it’s not the same as what D and I have. The summer before he was born was a nonstop struggle to come to some sort of detente with her. We screamed. We cried. We hurt each other. I didn’t know what was wrong between us, but despite our epic rows I clung to her. A few days before E’s birth I crawled into bed next to her and we held each other close. I knew it was the last time it would be just me and her together, alone together, as we had been so often for so long. She is my first child. She frustrates me endlessly. She makes me proud every day. A phrase I have seen very often on autism self-advocacy blogs is “Behavior Is Communication”. When D does things that are violent or aggravating or disruptive, I need to stop myself from simply responding to the behavior and instead try to deduce what has led her to that behavior.

Why was Alex Spourdalakis violent? Was it because his mother was subjecting him to biomedical “cure” treatments recommended by her friends Andrew Wakefield and Polly Tommey? Was his gastrointestinal pain a result of bleach enemas? Chelation? I expect we will find out at the trial. But he was trying to tell his mother something.

I will never understand.

Why was Issy Stapleton violent? Was it her reaction against endless behavioral therapies aimed at stopping problematic behaviors rather than understanding what she was trying to communicate? Was it a reaction against a mother that clearly had some need for drama, a mother who posted videos on YouTube of herself weeping and screaming as her daughter comes at her? Trying to tell her mother something.

I will never understand.

Your child is not a bit player in your own personal psychodrama. Your child is not a puzzle waiting to be solved. Your child is a gift, a miracle in every cell of his or her body, even if that body is in some way different from what you expected, what you always thought you wanted in a child. Your child is new and unfinished and essentially defenseless against you. Yes, even a 14-year-old autistic child who outweighs you. You are the parent. You always have options — not always good options, but options. Options better than killing your child who trusts you, who needs you, who is struggling and needs your love and your guidance, not your disappointment and disdain and despair.

I think it is an insult to my friends who are parents to autistic children who fall on the more “severe” end of the spectrum to express sympathy for these women. Thousands of parents are raising children who are very similar to Issy Stapleton and Alex Spourdalakis and would never dream of murdering their kids. We can and should have a discussion as a society about lack of services, lack of supports — but can we please do it independently of the conversation about murdering children? Kelli Stapleton had total strangers on the internet donate money, enough money to send Issy to a residential therapy program for six months. Dorothy Spourdalakis had people from Age of Autism filming in her kid’s hospital room; Andrew fucking Wakefield at his bedside. These were NOT women who were toiling away anonymously, penniless, without any resources or supports.

As a parent, it has been relatively easy for me to find blogs of other parents where we can offer each other support, to find accounts in the media that promote sympathy and understanding towards parents of children with autism. I agree that in our day to day, non-internet life, it can be hard to find the support we need. But the overall narrative in the media is one that gives parents a voice. Conversely, I have found it is extremely rare to find blogs or articles that are written from the point of view of autistic adults. Really. It wasn’t until I found Shannon Des Roches Rosa’s blog (through a search about iPad apps, of all things) that I was introduced to the voices of autistic adults from all points along the spectrum, from Ari Ne’eman at the “high-functioning” end to Amy Sequenzia at the so-called “low-functioning” end. So many parents of autistic children believe that organizations like the Autistic Self-Advocacy Network are made up solely of Aspies who don’t represent their non-verbal or aggressive child. They are WRONG, and the reason they are wrong is because they simply haven’t seen it, seen what their children are possibly capable of as adults. People like Kelli Stapleton and Dorothy Spourdalakis see their children’s autism as a life sentence, not only for their children but for themselves. Of course that makes them depressed and anxious, and in some cases, in people who already have their own issues to deal with, personality disorders, whatever it may be…they snap. And what ASAN and other adult autistic advocates and even many parents like myself are trying to express is that we cannot offer our sympathies to those people who snap, because their actions do nothing but perpetuate the currently rampant idea that autism is an unbearable curse for parents and children. That devalues and dehumanizes autistic people. The most common response to these tragedies, it seems, is to focus on the experience of the parent, try to find what possibly triggers their murderous behaviors. I think it’s more important to change the focus from the parents to the children, emphasizing how our society’s general perspective on autistic children is a dehumanizing gaze that is so pervasive that it warps how many parents view their own children. As a parent, I struggle, every day. But I have to always keep in mind that my daughter is struggling more than I am, and do everything I can to help her through. And part of that is refusing to support a media narrative that says I deserve a voice but my child doesn’t.

My son just turned two, and he doesn’t talk much. It’s frustrating, and ironic, to have had a daughter who is autistic and couldn’t stop talking for a million dollars, and a son who, from all available evidence, is not autistic but is just a big ol’ mushmouth. But one of the things he can say is, “I love you”. It doesn’t sound like “I love you.” It sounds kinda like, “N’doo.” But he says it to me every morning when I get him out of his crib. I speak his language. I hear his voice.

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One time on House it actually was lupus, though.

Aside

Yes, I did finally see a rheumatologist, although my route there was almost comically circuitous.  You see, when I was at the beginning of my pregnancy with D, I developed a rash. Nothing excruciatingly itchy or horribly disfiguring, but these spots started appearing around my ankles and then slowly, randomly, scattered themselves up my legs and onto my torso.  The first ones I thought were spider bites, but then they got bigger rather than fading. They were red, kinda scaly, kinda itchy. So I showed them to my OB. “I have NO IDEA what those could be.” (In his defense, he was a third year resident at the time.) He sent me to a dermatologist (also a resident). “I have NO IDEA what those could be!…Can I take some pictures?” Nothing better than having the red splotches all over your swollen belly photographed repeatedly while you stand in your underpants waiting for a surprisingly painful punch biopsy. The results came back and the dermatologist, in her somewhat strained English, described it as “lichenoid…like lichen planus.  It’s maybe autoimmune.” “So, like, my skin is allergic to my fetus??” I ventured, although even as I asked I knew the answer would be inconclusive and unhelpful.  She ordered something called an ANA titer.  ANA stands for Antinuclear Antibody, and it’s basically a really broad test that indicates whether your immune system has possibly gone haywire and is trying to attack itself.  My result was borderline high (1:160) and I was told to go have a baby and then come back to check in afterwards.

I dragged a livid, wailing two-month-old into the dermatology clinic half a year later to show the doctor the even larger annular lesions that had formed on my thighs and chest late in my pregnancy but were starting to fade.  She prescribed a steroid cream to help them skedaddle faster and had me retake the ANA test, along with a larger set of tests that check for the presence of more specific antibodies that can help pinpoint particular autoimmune diseases you may be at risk for.  A few days later, I heard from a nurse in the office, telling me that my ANA was high again, so I might want to maybe think about seeing a rheumatologist. I said I was kinda busy with the whole “my daughter is screaming bloody murder in her car seat” thing, so I’d probably wait to see if anything weird panned out.  The nurse said that sounded fine.

And then I went off and started attempting to parent and realized with horror that it really doesn’t become any easier to make time for “self-care” as your kid gets older.  It actually gets way harder.  And then I had a second kid.  Ha ha ha ha, yeah, I know, I’m really not all that bright. And then my older kid got diagnosed with Aspergers! And ADHD! And then my fucking muscles started popping off like rusted bedsprings one at a time and I was all, hmmmmm…maybe I should get that referral after all.

A small patch of psoriasis on my knee finally gave me an excuse to head back to the dermatologist — a different woman this time, who seemed decidedly more concerned. She gave me another ANA test.  While I waited for those results, I flipped through my medical records (which I happened to have in full due to the legal process following a car accident) and found some interesting information that had not previously been adequately disclosed to me.

First of all, the pathology report on that biopsy was eye-opening, to say the least.  The rash that my doctor had said was “sort of like lichen planus” was actually described as “lichenoid dermatitis” and the pathologist specifically said he thought it was “unlikely” to be related to lichen planus but rather possibly associated with “collagen vascular disease”.  Thank god for the good folks at Habush Habush & Rottier, LLC, because none of that shit showed up on the little biopsy summary on the UW Health My Chart app. Also, some numbers caught my eye. The ANA test they took after D was born was actually higher than the first one (1:360) , and it wasn’t the only positive result.  I was also positive for something called Anti-SSA, an auto-antibody closely associated with Sjogren’s Syndrome and lupus.  I honestly don’t think the doctor ever even saw the Anti-SSA positive. Nothing in her notes says anything about it, and the last call I got from the office was the morning before that result came back.

This time around, a nurse called from the dermatologist’s office the next day.  My ANA was positive, and they would be referring me to the rheumatology department. “The good news,” she said in a misguided attempt to be perky, “is that all your kidney function tests are normal!” Was I supposed to be worried about my kidney function? Shellshocked, I hung up without asking for the actual result and had to call back to find out. 1:640. They took it twice to be sure. When they do an ANA titer, they dose the cells with fluorescent dye and look at it under a microscope to see the patterns the antibodies form on the slide. These patterns can also help indicate what autoimmune disorder you’re dealing with.  The first time they ran it, it had a “speckled” pattern, which is relatively non-specific but rules out much stuff other than Sjogren’s and lupus. The second test, the pattern was listed as “homogeneous”, which is pretty much only seen in  people who are either completely healthy…or have lupus.

So now one side of my brain has turned into George Costanza, wringing his hands and whimpering, “Is it lupus? It’s lupus, isn’t it?” And the other side of my brain is Greg House and is shouting, “It is NOT lupus.  It is NEVER lupus.” And, you know, in general I’m inclined to agree with anything Hugh Laurie tells me.  He’s the damned Prince Regent, after all.  He spent a night of ecstasy with a pair of Wellingtons and he loved it.  But given that I wasn’t seeing any doctors at Princeton Plainsboro and it’s pretty unlikely that I have naphthalene poisoning from termites or a tick in my vagina, the Costanza side of my brain seems to have more weight than usual.

But I don’t have lupus.  At least, not yet.  You have to have four symptoms off a list of a possible 11 to qualify for the diagnosis.  So far as I can tell, I have three.  Which does qualify me for rheumatologist visits every six months until one of my vital organs goes into imminent collapse.  Meanwhile I maaaaaybe have an undifferentiated connective tissue disease, but I also maybe probably have fibromyalgia? Or maybe also/or myofascial pain syndrome? Piriformis syndrome? All of the the above?  Unfortunately, what I definitely 100% do have, and have had for a very long time, is bipolar disorder, and all the drugs that work on fibromyalgia are effective because they futz with neurotransmitters.  As do the two other medications that I’m on, medications that have kept me from being a total basket case for nearly a decade.

You know what’s worse than a parent who is exhausted and in chronic pain? A parent who is manic. You know how I know that? Because I’ve been manic.  And manic people are the worst. Worse than Chris Brown.  Worse than graduate students. Worse than everyone in Keith Olbermann’s book.  WORSE THAN KEITH OLBERMANN.  Depressed, I can do in my sleep.  That’s actually a very precise description — if all else fails, if I’m depressed I can probably just go the fuck to sleep.  But mania sneaks up on you.  There is nothing more terrifying than knowing that if you let your guard down, or your prescription drug coverage lapse, there is something waiting in your brain for the perfect moment to take control and ruin your life.  Stupid fibromyalgia.  I couldn’t have something that could just lead to a relatively benign opiate habit. No, I get the pain that needs antidepressants to treat it.  Which just adds to the impression, one I myself am not immune to, that fibromyalgia is a bullshit diagnosis, is “all in your head” as they say.  It’s not bad enough that I spent the first three decades of my life dealing with the perception that all my mental health issues would be resolved if I stopped acting like such a stupid lazy fuckup who never lived up to her potential.  Now you’re telling me that the pain I actually feel, in my actual muscles, pain that makes my shoulders twist into ropey knots, pain that shoots down my sciatic nerves and stabs me in my temples, pain that makes me be for mercy when something as seemingly inconsequential as my jaw seizes up…is pain that Cymbalta can fix? Man, fibromyalgia can suck it.