Cake Season

A year ago today I was running through tall summer grass after my daughter who was running away from home. She ran away every few days last summer.  She would never get further than the dollar store a block away but she and I would get blisters and ant bites from running in the grass because she usually took off barefoot and I took off after her—I would wait for hours until she would walk back home with me sometimes and once I called the police because it was 2 a.m. They wanted to know if she was armed. I said that no, she was thirteen, autistic, wearing zebra rainboots (that night she’d had the good sense to put on shoes—I hadn’t), and when the police came, she was happy to ride in the cop car. I’d hoped this wouldn’t set a precedent. It didn’t—she hasn’t been in cop car since, but that summer she was hospitalized. It was a rough summer one year ago. A year ago, my daughter was ill. Her meds were being readjusted. Just this past weekend she saw Inside Out with me at the sensory sensitive theatre and smiled at me over the part when the little girl ran away. She’s fine now, never been happier. She goes to gymnastics, bowls, doesn’t tantrum at school, will be taking swimming classes next week.

This is the Deep South and things grow and die so quickly here in the summer. The land is damp and the culture is ripe for evil or good—it all depends on how the wind blows. Changes happen so fast that it’s hard to believe sometimes that time is really passing. Hurricanes level worlds and the worlds come back. Last summer the backyard was crawling with poison oak, and this year we’ve had more time to tend to eliminating that vile plant. Last summer my daughter was ill. This year she’s well. Almost thirty years ago, I was a young bisexual bipolar girl in a romantic relationship with a woman and writing articles for the GLBT journals and the idea of marriage equality was unthinkable; this past Friday the Supreme Court of the United States ruled that marriage equality was the law of the land. I tried to explain to my son how I never thought I’d see such a day in my lifetime. I told him how eighteen years ago, his father and I had had the discussion about whether or not we should marry when our friends did not have that privilege. I argued that we would be better allies if we were armed with health insurance and all the rights afforded us under the law. A few weeks ago, because I am a legal wife I had the opportunity to access my husband in hospital when he was committed by the state; I thought about how if I had chosen to live my life with a woman for a partner and, G-d forbid, she would fall ill, I would not have the privileges of filing a joint tax return, adopting children, inheriting after death. Years ago, I told my husband that I hoped that one day our friends would be able to marry but no, I didn’t really believe they would be able to, not in our lifetime, not in Louisiana.

Louisiana is still the last hold-out in the fifty states with no same-sex marriage having taken place since last Friday’s SCOTUS ruling, but governor Bobby Jindal has said that he has no choice but to comply; clerks will probably begin issuing licenses in a matter of days.

I sometimes live life day to day on blind hope, with a burning will to just keep going. Other days I have a reason to hope. This week after seeing Inside Out, my first movie in oh I don’t know how long because we don’t get out much, stepping out into the sunny parking lot, hand in hand with my daughter who laughed at all the jokes and smiled at me because I was crying at the sad parts, I was hopeful. Friday, after browsing on social media for a few hours and seeing all the elation over the SCOTUS ruling, I was stunned, then a little more stunned, then hopeful in a way that I can’t describe. I’ve long thought of life as waves rolling back and forth, and as justice doing pretty much the same thing—sometimes you’re up and sometimes you’re down. Hell, why wouldn’t someone who is bipolar believe this?  But legal decisions change lives---this country will be a different one for so many now.  These legal decisions will hold; they will set precedent; they have a power not even the drugs and hormones in my daughter’s body have lasting permanence. Every night, as my daughter grows up with her illness, I find myself praying that whatever is working—whatever medicines or alignment of good fortunes in her neurological chemistry—will keep on making her grow strong.  Sometimes, when I think about the fate of the United States, as I have been less likely to do the more intimately I’ve become wrapped up with the day-to-day problems of family life (yes, I was way more political in my whippersnapper days—moms at the helm of special needs families don’t have much time—and bless those who DO advocate), I’ve been way too cynical. This week, let’s just say that I am someone who can’t bake unless I’m using a box mix and blaming the humidity for how terribly my cakes come out, but I baked a cake—and I covered it with rainbow sprinkles, and lo, it was called the RAINBOW SPRINKLE CAKE. And the family ate of it, and we celebrated, because how many times in a lifetime can one celebrate something like this recent SCOTUS ruling?

It was as weird to me as the moon landing which happened in my lifetime also.  “The things you’ll see if you live long enough,” I pronounced to my kids who didn’t seem to understand the big deal. They’d never seen their mother so full of sugar and processed food. I think they didn’t recognize it’s hope I’m full of right now.  Like cake, it’s a fuel that gets used up fast, but for right now? Let me have my cake. Cake season is usually Mardi Gras in these parts.  I don’t think I’ve ever liked cake before. I know I’ve never felt this sort of hope before. Not sure why. But there on the kitchen table is a lop-sided cake with rainbow sprinkles.

My Smile Hurts Sometimes; When Everyone in the Family Has Special Needs, What’s Special?

The emergency room nurse asked, “Any family history of schizophrenia?” 

I told her no, but that my daughter’s mom had Bipolar 1.  At the time, I was aware of my own detachment and the way I referred to myself as “my daughter’s mom.”

Meanwhile, on the examining table, my seven-year-old daughter, sucking on a Pedialyte popsicle, was drifting past the seventy-two hour mark of her first ever psychotic episode. Sophie hadn’t been eating or sleeping—only a few sips of soymilk and not a wink of sleep. Usually a big fan of car rides, she hadn’t wanted to climb on her booster seat that evening. “The world hates me, blackness is blackness, life is garbage.” The past few days had been heavy on the depressive, albeit busy with the mania. I knew from experience the ordeal was a “mixed episode,” but at the time I refused to believe that bipolar could present in someone as young as seven. As the intake questions went on, Sophie cast a little smile in my direction.  I felt comforted by that smile.

“Anyone in the family diagnosed with anxiety disorder?”

I either laughed or made a moaning noise like some animal dying under a porch. I don’t remember the sound that preceded my words, only that they were uttered with a kind of exhausted defiance: “Sophie was conceived during a Woody Allen movie. She comes from a family of Woody Allens.”

For some reason, the comment brought down the house. Even the orderly in the hall (who Sophie had bitten an hour earlier) was laughing. I was glad because otherwise, given my anxieties, I’d be worried that everyone might think I meant that Sophie had been born into a family of sexual predators. 

What I meant that night was that everyone in the family is a mess of nerves. Jewish, either diagnosed outright with OCD or suffering from some subclinical form of it, always escaping real or imaged monsters, turning bathroom lights off and on, double-checking grammar in casual notes to repairmen. My son Asher at age ten could not stop washing his hands. He washed until the flesh became chapped and bled. Columns of space in his room were contaminated with “evil” and could not be passed through. He got better with cognitive therapy; he also got help rationalizing away magical thinking from his dad, a philosophy professor with his own alphabet soup of diagnoses. My husband calls his ADHD, OCD, GAD and the major depression that finally pushed him to an early retirement and a disability determination “the genetic legacy of pogrom season.” Our people are a nervous people, he jokes. Descendants of those who heard the Cossacks coming survived to obsess about whether or not the air purifier filter is changed on time.

All this, of course, isn’t to claim that persecution and anxiety are Jewishly exclusive—just to bring up a family motto. My son, even before his diagnosis, was noted among his peers for being “the funny kid,” and he’d respond that he’d inherited “the Shecky Gene” (yeah, nine-year-olds who make allusions to Shecky Greene are what I mean by our whole family are Woody Allens).

“Our people are a nervous people,” Asher would say, echoing his dad. “We have to laugh or die.”

In some versions, the saying is amended to “in our family, we go crazy or die.” In all versions, it’s better to keep laughing. Or at least smiling.

Asher, in that way genetics is amazing, looks very much like his dad. Polish white skin, allergic to everything even air. Sophie takes after me. Not just with the bipolar. She has olive skin and an affinity for pungent foods that would make her brother and father keel over. The guys can’t handle strong feelings or strong spices to the extent that Sophie calls the noodles without hot curry eaten in our household “boy ramen.” Soph has the spicy girl gene, I claim, from Sephardic side from the Mediterranean. The Jews in my family tree weren’t escaping Nazis or Cossacks; generations ago, they pretended to be Catholics to avoid the Grand Inquisitor.

Somewhere along the line Max’s side of the family learned to be quiet to avoid being discovered in the basement, and mine learned to throw dishes at our persecutors and use hot chiles as weapons to blind our enemies in battle (not sure about that last part but why not).

Sometimes I wonder why humankind hasn’t evolved itself into utter insanity with its history of genocide and persecution, and it was while I was wondering stuff like this as a neurotic adolescent that I became aware that my parents visa to the United States had expired and I was officially an illegal alien. I know that “undocumented” is the politically correct term nowadays, but I grew up in terror of deportation most of my adult life. I had come here to the U.S. from Ecuador as a baby, when my bipolar was only a genetic propensity (it would present in my teens with the first clue being I suspected carrots were evil). Speaking of anxious—my parents used to hit the floor if they heard a tire blow out because they thought the noise meant gunfire and “revolution.”  I became a registered alien sometime before my marriage and a U.S. citizen a few years after the birth of my first child. 

I married my own kind, naturally. A poet with bipolar married a philosopher with major depression and we reproduced. Our parents were less than happy about the genetic prospects for our having “normal” children.  Max and I knew to be on the lookout for depression and screwball humor in our offspring. We were optimistic. We thought we could handle anything, even a whole Von Trapp load of Special Needs children against a backdrop of Nazis if need be. We’d been through so much already, and we had Torah and the Marx brothers on our side after all.

Sophie was the healthy one in the family for a while. She was the one neurotypical person. She wasn’t introverted either; she actually preferred the zoo to the library and didn’t mind meeting new people at parties. “Maybe she’s a happy, loved version of me,” I mused to Max. “She likes wasabi—maybe that part is genetic. The love of spicy food is Nature and her not having any fear of the big bad world is Nurture. It’s because we’ve done such a splendiferous job of parenting?”

I thought maybe we’d screwed up with her brother, instilled a fear of germs in him somehow. Parents of special needs kids never get over the guilt, no matter how much they read up on genetics, no matter how much they reframe experiences in compassionate context—we’re guilty. We never really forgive ourselves for the tiniest bit of pain we may have brought upon our kids.  I’ve read that the evolutionary advantage of guilt is that, like all negative emotions, it forces us to look at our mistakes so we can correct them.  Max and I, like many parents, were less hovery and protective with our second child. Max and I were so happy with Sophie being the fearless kid, the one family member who didn’t go to the psychiatrist. It was Sophie’s specialness.

Then something happened. At first we thought Sophie was trying to get attention because her brother was getting all the rides to doctor appointments (she loves car rides and getting out of the house) and because Daddy was explaining “magical thinking” (a term that sounds cooler to kids than it really is) to Asher. Sophie, who was the world’s happiest kid, started to cry a lot. Then her drawings started to get weird. Then her handwriting started to get sloppy. She started to draw with only a black crayon. She taped the drawings on the wall. “Blackness, blackness.”

Then she stopped eating. 

She cried for three hours straight, picked up a paper towel roll and spoke through it like a megaphone: “There is no GOD, GOD HATES YOU.”  I didn’t know what to feel.  I understood that the family was going through a crisis, so I went into survival mode and tried not to feel. I began to practice a necessary detachment. I must have recognized myself in her at the time, but the bipolar diagnosis did not even occur to me. I had no idea what was wrong with my child.

It was after Sophie had not slept for three days that I took her to the after-hours clinic a block from our house. She already had an appointment with a child psychiatrist the following week, but I couldn’t wait. Sophie had drunk only a few sips of soymilk that day, and I was worried about dehydration. The clinic, of course, sent us to the pediatric e.r. where Sophie miraculously accepted a popsicle, and a doctor was summoned.  The recommendation was to put Sophie in an institution in another city because ours did not have accommodations for psychotic patients as young as my child.

Psychotic. My husband kept pointing to the word on the discharge paper when we got home. He supported my decision to keep Sophie home, but he wanted to be sure. “Do you understand what psychotic means?” he asked. Of course. I’d been there. Four hospitalizations starting in my late teens and continuing through my twenties. I knew that psychiatry had changed since I was a kid, but I didn’t know how much and anyway, I wasn’t teaching that semester so I would watch Sophie myself. I would get answers and the right medications and everything would be all better soon. After all, I’d become all better with medications (not all better--to this day I hoard plushies and need more closet space but I don’t have hallucinations or stay awake for days anymore). It would all be okay.

It wasn’t. Not for years. What happened was that within a few days Sophie saw a psychiatrist, a neurologist, a psychologist, and no one knew what the hell was going on. Medications were prescribed. Sophie got worse. I mean, crapping her pants worse, and she stopped talking. No words for weeks. I was terrified. Eventually, I found a prescribing psychologist who made home visits (I didn’t know such a unicorn existed). She took Sophie off all meds to find her baseline and made the diagnosis of Bipolar NOS (Not Otherwise Specified—a term used for very young children which just means “we don’t know what the hell is going on”). In conjunction with other health professionals over the years, a diagnosis of autism followed to augment the bipolar.

I knew it.  I had always seen a language delay (pediatricians and Hebrew school teachers had not caught it) and a poetic weirdness. “Polka dots are happiness,” she tells me now at age fourteen even though she still can’t tell a narrative story with a beginning and end. She repeats phrases—in a way I find lyrical but psychology calls echolalia. She is highly verbal but autistic and has difficulty reading and writing because sensory stimuli can, at times, overwhelm her. Children like Sophie blow apart the myth that autistic children are robotic and unemotional. Sophie has a serious mood disorder. Without vigilance and management, her moods disable her quality of life. She lives a life with Bipolar 1, autism and generalized anxiety that are as much a part of her as her brown hair, her love of sushi, her smile.

Guess who followed Sophie with a new shiny disability diagnosis? It’s not uncommon for parents to have their own ASD (Autism Spectrum Disorder) recognized after their children are diagnosed. This happened with Max. Another acronym to throw on his pile but not much of a surprise. He’d always been the classic absent-minded professor, a walking Asperger’s cliché. The philosophy professor, in fact, is the one who chose Sophie’s name—after the Greek word for wisdom. She lived up to her name. One night, when Soph was having a honking bad depression (puberty had fallen on her like a wall of bricks that year), and I was suffering, reduced to begging the way only a helpless mom can with please don’t cry, please smile, Sophie looked at me as if I’d just turned into SpongeBob Squarepants and said: “Mom, that’s a fake smile.”  

At least she stopped crying long enough to sass me. Now, I’ve never wanted Sophie to be anyone but her true self, and it’s a controversial subject in the autistic community that some types of treatment teach children to fake it in order to conform to society. Still, even those of us who have never been through Applied Behavior Analysis (for the record, Sophie’s never had it) learn that a simple smile is a fair enough answer to eyes gazing on disability with the plea be ok. Not long ago I realized Sophie’s true wisdom. That’s when I caught her smiling a broad smile even as she wept slow tears over news that her beloved sitter was moving away. I called faker, and my wise girl turned to me and pronounced, “My smile hurts sometimes.”

Do we smile to reassure others or to make ourselves feel better? Didn’t Charlie Chaplin write a song about that? Keep smiling, Sophie. Charlie Chaplin was a pretty wise guy for a goy. 

Wisdom isn’t special to Jews, and special needs are common to pretty much all humans, really.  Life lesson I’ve carried away from years of filling out forms and checking the “special needs” box? I’m not that different or special.  

There’s a saying in the autistic community that every autistic child is different, and while a helpful idea, it’s not, like many platitudes, that challenging—it’s not the saying, at least, that has reached into this parent’s guts and churned my compassion for all humanity. Every autistic child IS different. So is every human from another.  I often find it more interesting and empowering to find ways humans are alike. Jews are like Christians are like Buddhists are like Nazis are like stamp-collectors in many ways. We contain multitudes and contradictions. In a family where everyone has special needs, what indeed is special?  Some parents, like me, go on and on with words and jokes, when our pain is clear. Some autistic children, unlike my daughter, have no words, but when these children cry, their parents and caregivers can understand that pain. Not everyone walks around with a bipolar diagnosis, but humans are all capable of such amazing highs and lows.  When we are happy we smile. Sometimes when we are not happy, we smile too. Other times joy and pain come in one moment. It’s those times our smiles hurt, and I know what my daughter means.

First Post

For the first time in months I haven't been scared to walk to the mailbox. Last week, a letter came from a social security judge that brought me such good news--the relief was like being in a new body, it was that intense. The social security adminstration judge ruled fully in our favor on some arcane issue regarding an overpayment in our daughter's disability case. The letter came seven months after the hearing, and we're getting back hundreds of dollars back now that the state has been taking out of my girl's payments.  I'd been so scared that the judge would rule against us--she'd said at the hearing that it could go the other way, that it was a 50/50 case with no precedent. It would not have been the first time social security messed up. My husband's charged the office before to correct them on their math, but this is the first time we had to appeal to a judge. 

Some people think living on welfare is coasting but it's work of its own--so many forms to fill out, so many lines to stand in, so much hassle. No sane person with other options bears this.

No one in this family is sane.

The husband was committed six weeks ago. It was his second involuntary commitment to a mental hospital in Louisiana in sixteen months. He was released within twenty-four hours, against procedure, without prescriptions, and because he was terrified to see the doctor who incarcerated him and Medicaid made it impossible for him to see another doctor, he went five whole weeks without necessary medications. It took the help of a pro-bono mental health advocate for him to get an appointment with another prescribing psychiatrist, but he has his prescriptions now. Finally.

I'm breathing a little easier. But I still have forms to fill out--two special needs children to care for, my husband who is wobbling on medication changes to look after, and oh, the same doctor who may have illegally committed my husband sees me for my bipolar 1 but I have no insurance and no option of seeing another doctor.

I like that doctor. I really don't assign that much blame to the clinics around here--they're understaffed, over-worked. People make mistakes. If I blame anyone it's the guy who announced his bid for the presidency yesterday--the governor of our state, Bobby Jindal. Louisiana's health care system was degraded before he got to it, but he fucked it to such miserable depths that one of my goals in recovery of my own soul is: thou shall no longer waste time imagining ways Bobby can die.

I could fill a book with those Die, Bobby fantasies. But ok, this is enough for a first post. Next post will be a slightly sentimental thingie I wrote for an anthology of mommies of special needs kids. My daughter had her first psychotic episode at age 7. Yeah, fun times. I figured the book I'd write would be how my life went to hell after that--because obviously, it came back from hell. I have some time to write now. The notes start here. I have others scattered here and there. I'll collect and share.

I'm afraid of the future still. If I weren't, I wouldn't be the one in charge.