Liar

CW references to rapist
My first memory was a triumph, a victory over my cult leader. I deceived her, tricked her, cheated at potty training and made her believe I’d tinkled by pouring a stream of water from a cup down the toilet. Stifling a giggle while I flushed, I opened the door to retrieve my candy reward. I hadn’t yet learned to feel ashamed of lying.

I am abused. I do not want to describe it. The lawyers make me. Doctors touch me. The prosecutor tells me I am a bad victim, that I dressed like a slut, that I wanted it, that I didn’t fight back, that I returned to the scene of the crime, that I was too friendly with the rapist. That the jury will blame me. He refuses to try the rapist. I am 8 years old. I told the truth. 

I told tall tales, fish stories, and whoppers. I took after my grandma and great grandpa in the Southern storytelling tradition, which is a polite phrase for lying. My mom had me come up with a hand signal like a campirefire crackling for when I was telling a story that had no basis in truth, so it could be considered narration and not sin. 

When I was bullied in school and had what was in retrospect severe depression, I would call it a stomach ache or a cold to get out of school. Pressed by the demands of work my mother saw this as obstinacy, and more and more often called me a liar and told me she could not trust me. That if I kept on this way, she could never trust me again. This begins a lifelong panic that I will not be believed when it counts, that people will think I’m a liar. 

I change my name. I change my hair. Again and again and again. Every time we move I hope I can shed the eternal dork of awkward weirdness and shame that is me. I get a new makeover and a new look. Punk, beach, raver, goth, alternative, emo. I even tried preppy for all of two days before dramatically hacking my hair off in the parking lot with a friend’s borrowed katana. This was pre Colombine, when that kind of thing didn’t seem so weird or scary. I wanted to fit in. I wasn’t trying to lie, I just didn’t know my truth. 

When I became a young adult I joined Al-Anon, a cult centered around regular public confession. Naturally that appealed to me, someone who wanted not just to be honest but to be seen to be honest. And of course since then I have been blogging. Of course I want to write a memoir. I have been raised to confess all since my birth, and I have known that monsters are free in secrets. It just feels a tad narcissistic, there’s no denying it. 

Fidget Fad Fiasco

Unless you live under a childless media free rock with no shops, you’ve probably seen a fidget spinner over the past month. It’s a simple three armed toy that spins around a central bearing when you flick it. Cheap models start at a dollar while pricier versions come with seizure inducing LED lights, rhinestones, or licensed characters as added features. They’ve been marketed as aids for children who have ADHD, with absolutely no scientific backing. 

I asked autistic activist NeuroDivergent K for a quote on light up fidgets in particular and here’s what they had to say:

Nothing that flashes belongs in the classroom. A strobing fidget is never an access need. I support the right of all children who need something to do with their hands to exactly that, but flashy things are both dangerous to a subset of the population and unnecessarily distracting to even the most focused of people.

The argument for spinners as ADHD aid is that they can help kids focus by giving them something to do with their hands, that the spinner becomes a stim or stimulus object. This presumed that the child has ADHD of a type where they need more stimulus to focus rather than less. While this can be the case for some, most people with ADHD find themselves distracted by too much stimuli at once. For example, my son finds it difficult to focus on assignments if his teachers have overly decorated the room with visual information. A toy in his hands is a hindrance for focus, not an aid. 

A toy does provide comfort, and for many years he carried a soft toy as he walked from one class to the next. Petting and hugging it eased the stress of transition. Now he’s older and more confident and doesn’t need that. He’s ready for cooler fad toys like fidget spinners, and having the thing everyone else has got. (While I’m trying to raise a cult resistant antifascist rebel, it’s always a milestone when your child with a social developmental disability picks up their first fad.)

That’s what the fidget spinner is. It’s a popular viral craze. It’s the Macarena slap bracelet goldfish in a platform shoe Charleston. It’s not an accessibility device. It hasn’t been studied. It wasn’t developed by child psychologists or disabled people. It’s manufactured by toy companies. This isn’t a disability rights issue. It’s a toy masquerading as one. And for people who say “Let people like things”, that’s not what the school day is for. 

My son is a charming, cunning, persuasive little guy and he’s succeeded in convincing far too many teachers and paras that they should do his work and let him play. He’s a bright boy who needs to be getting his education not playing with toys while he’s in school. He has the same legal right to a real education as any non disabled student and that starts with not playing with toys when he should be doing his work. Do not fall for the soft bigotry of low expectations or the “kindness” of infantalizing preteens with ADHD. 
This post has been edited to include a quote from NeuroDivergent K. 

Thanks Big Pharma

It’s the first weekend of my son’s summer vacation. We’re celebrating with a day out at the art museum and some of the city’s fine parks and we will be taking the light rail each way. We will be away from my home bathroom for hours. As an IBS patient that’s something I’m more conscious of than most. In the old days I could not leave my toilet comfortably for more than 90 minutes at a time. 

These days I’m taking a prescription drug that targets my bowels with a muscle relaxer. I’m also taking prescription antacids so I’m not having such bowel distress to begin with. I was taking an antiemetic for awhile but I discovered it was the cause of some truly horrific constipation. Side effects happen, usually to me. But the antianxiety medication keeps me from somatizing stress in my guts, and that spares me hours on the toilet. 

Probably most important of all is my antidepressant. That’s the one that keeps me going back to my nurse practitioner, trying to find a solution to my migraines. It’s the one that gets me to physical therapy appointments and makes me do my exercises when I’d much rather play video games in bed. It’s the one that pulls me to therapy and psychiatrist appointments, and gives me strength not to feel hopeless.

My antidepressant is the one that gave me the happiness to see an open Sunday as an opportunity to do something fun, and to imagine myself not too tired or in too much pain to enjoy it. Without it the vape pen to manage my pain and pills to steady my guts and my nerves wouldn’t matter. It all starts with hope. So thank you Big Pharma for giving me hope and calm and the capacity not to shit my pants. It means a lot. 

Why Do People Join Cults?

I come back to this topic every year, because it’s the most important thing I write about. It is the most confounding question and it has the simplest answer. People join cults because they are human, and they have unmet human needs. Ithink we want it tyo be something complex or difficult, some nefarious super secret exploit that cult leaders are hacking. But really they just take advantage of basic needs: to be loved, to belong, to have purpose, to have structure, to be punished and forgiven. 

Your cult is your mother and father, giving you identity, sustenance, and your sense of safety from the outside world. It feeds you, dresses you, and tells you who to marry. You rely on your cult to protect you, guide you, teach you, correct you, scold you, chastise you, and love you. This is not a balanced relationship of equals. You are dependent: a child at their feet, filled with wants and needs you can only hope they will fulfill. 

When the cult leaders and their agents do turn to you, do address your needs, you feel as if the sun was placed in the sky only for your joy, almost selfish in happiness. Senpai noticed me! It is spotlights, Christmas, Hollywood, Broadway, Vegas all wrapped up in one – the glow of of being near the leader’s bright shining light. They are no mere mortals, or at least it’s easy to forget they are. On the inevitably low quality videos they make in dated outfits with bad hair, their charisma never comes through and they are openly laughable. 

But to be in their presence is to fall under a hypnotic spell, to be enchanted and enraptured. They are mystics of the highest order. Part snake oil hucksters and part snake charmers, charismatic movement leaders have a special talent for making people feel seen and heard, without really looking or listening. A dedicated cult member in the presence of their master will feel peace, enlightenment, and spiritual awakening. A heightened state of being simply from exposure, a veritable contact high. 

My grandmother would take calls from devoted followers while cheating at crossword puzzles. When she couldn’t bear to feign interest in their ramblings any longer she’d snap two Lee Press On coated fingers at me as a signal. “Giggy!” I would cry out for her. “Oh my granddaughter is calling for me, I have to go,” she would give this technical non lie, then laugh in victory as she hung up. She’d pulled a fast one on them. 

I did see that side of her. I saw more sides than most and I still loved her, love her. It’s impossible to explain. I know she’s evil and yet I have never met anyone more loveable. She was easy to fall in love with. She made it so. She wrote a narrative that was compelling, told a life story I wanted to hear more of. She was all spark and sparkle, and yes evil too, but so fascinating she made that seem like a footnote and not the main story. 

In a world of dull, cult leaders shine like diamonds. No, like supernovas. And they promise to give everything the rest of the world doesn’t: safety and security, but also beauty and sparkle. And oh how I love sparkle. 

The Destination and The Journey

“It’s not about the destination; it’s about the journey.”

This fortune cookie wisdom is found on most Autism Mom blogs, framed by puzzle piece borders in eye assaulting primary colors. Autism Moms as a breed tend to be upper middle class, married, and white. They had certain lifestyle expectations for their children built around play dates, soccer, and summer camp. Their original destination was college, ideally a nice private college close by, but a state school as a safety option wouldn’t be too bad. 

When they say, “It’s all about the journey” they’re embracing a regiment of applied behavior analysis therapy, or letting go of their previous expectations, or accepting the fact their child may never speak orally. It can mean a lot of different things, some very loving and some fatalistic. It’s a phrase I have difficulty with because I feel the very opposite way. I have lived my life in the reverse. 

I gave no thought to my destination when setting out on road trips in my youth: I would just get in the car and go where my impulses led. I ended up in Miami, Daytona, St. Augustine. I could not pick just one major in university so I changed it every semester that I was enrolled. English Composition. American History. Israeli Palestinian Politics. It was all fascinating and I could have stayed forever if college was free. I didn’t have a dream career picked out and fell into both an executive level operations position I lost, and this writing gig I now have. 

I have flown by the seat of my pants for most of my life, waiting for things to happen for me to respond to. But the gigantic exception to this is parenting. That’s where I am intentional, where I plot and plan and am decisive. I left my ex husband when my babe was only six weeks old. That gave me the freedom and responsibility to make all the decisions myself. No one else gets a vote, I am the only one. It’s an awesome and terrifying thing to be the dictator of another person’s life, and legally that’s who I am and need to be. As fair as I try to keep this power imbalance, I am the dictator of his life for now. So I must be wise, and thoughtful, and not just enjoy the journey. 

I have only 18 years to prepare him for adulthood, only 18 years until I am not his legal guardian, only 18 years to teach him as much independence as I can. Parents of disabled children have less luxury to to just relax and take things easy. Our kids need more help preparing for adulthood, whatever that’s going to look like for them. The more they can do for themselves, the less they will have to rely on caretakers, the less they will be at risk of caretaker abuse. The journey can be wonderful but we need to make sure we’re preparing our children for their destination along the way. We need to presume competence, we need to teach skills, and we need to challenge them to think of independence as a goal they can have. 

First 1000 Years CE

For more than a thousand years
The world built, designed
Constructed, and devised.
Made worlds of paint and pottery
Woven tapestries and words woven into poetry.
Tombs and temples, crypts and cathedrals
Homes for the dead and their gods.

But not us.
We clung to our superstitions
and our swords.

Girls Clothes For Boys

You’ve seen the creeping trends. Salmon shorts. Pastel pink shirts. Now rompers for men. After generations and centuries of women pilfering men’s fashion for our own, men are finally losing at woman’s wear and saying “I want that.” As an unrepentant former tom boy who wore cut off shorts, leather hackjets, and baseball hats to let everyone know how tough I was, I’m not opposed to this reversal. I say yes to men adopting women’s fashion. 

Yes to men in rompers and sundresses. Yes to men feeling the warm sun and cool breeze on their skin. Yes to men experiencing a little vulnerability in their dress sense and some florals and pastels in their wardrobe. Yes to softness and tenderness. Yes to scalloped necklines and flippy skirts that catch in the wind.Yes to gentlemen and gentle men.
The cut of a dress tells your body how to move and you will glide or mince or stalk through the world as your garment dictates. A man who has only walked in bifurcated trousers is limited in his way of physically experiencing movement and being. A beadesd skirt slung low around the hips creates one sensation, a high waisted pencil skirt provides another. I want men to have this wealth of tactile knowledge to draw from when writing women characters so maybe they can do a better job. 

I want men to feel these good sensations for their own sakes too. I think men starve themselves of almost every good feeling, a kind of sensory anorexia. Beer and rage, sports and sex are some of the only sensory outlets they are permitted. Your “safe foods” if you will. Everything else is a bad food, an evil calorie. Girly or high fat or gay. You don’t show tenderness to your own bodies with skincare routines and moisturizer, facials, and pedicures. That very sentence probably made you uncomfortable. 

You starve yourselves of self love. Now that I can see it for a form of deprivation, I can sympathize. I have hurt myself in similar ways. I hope men do get rompers and lotion and therapy and all the self care and self love in the world. I think it would be good for the whole world. 

10 Steps When Your Teen Comes Out

The preteen and teen years can be scary for parents, filled with changes and new influences. Our babies are growing into adults with a lot of bumps and bruises along the way. We can’t save them from every hurt but we can doi our best not to inflict extra pain on them. If our children come out to us as LGBT, here is a 10 point script to get through the conversation with the relationship closer than ever, and your teen reassured and less likely to commit suicide. 

1. “I love you.”
2. “I have always loved you.”
3.  “I will always love you.”
4.  “I have a lot to learn.”
5.  “You will always have a home with me.” 
6.   “I’m sorry you couldn’t say this sooner.” 
7.  “I still love you.” 
8.  “I accept you.” 
9.  “I will try to understand you.”
10. “I will fight for you.” 

Dear Mom 2017

Long ago when I was 9, I made a class project on My Hero. I picked you. I was blown away by your smarts, by all the other interesting people you surrounded yourself with, and by all the things you knew. I wanted to be just like you. You kept that little construction paper and photograph project in your various offices for years, one of the only signs you might treasure me. I wanted to worship you. I settled for Gig. 

I was 8 the first time you really did right by me. I told you I was being abused by a neighbor man and while your first words weren’t the best (“Why didn’t you tell me sooner?”) your actions took me seriously.  They also retraumatized me and taught me in very clear terms why I hadn’t been a perfect enough victim: where my 7 year old self had been at fault. You didn’t shield me from that, or make it better after. 

The good that came out of you turning to the authorities, as you should have, was that for the only time in my child life I got real help. In group therapy I got a glimpse of real mental health care and like a junkie chasing their first high I’ve been looking for that ever since. I’ve been looking to feel less broken inside. But damn it hurts to admit, to confess, that you are one of the forces that ripped me apart. You’re the one who stole my birthrights of safety and of love. 

I’ve cut you so much slack for that, for giving me the door to my first tool, and for believing me the first time I told you I was being abused. But they can’t be my whole childhood. I wasn’t just the 8 year old who told you she was being abused. 

I was 10 when I caught the flu and wouldn’t eat for a week. I could have died, couldn’t I? And my sister too. 

I was 12 when I lost my eyeglasses and you decided I was too irresponsible to get me a replacement pair. 

I was also 12 the first time I came home smoking a cigarette and you didn’t object. In fact you never once said “Don’t smoke” to your minor child in all the years I lived under your roof, even though you could have. 

I was 14 when my hip dislocated and you told me that I was a liar, that I was faking it, making it up for attention. Who does that? Nobody! And nobody commits to it for three years. 

I was 16 when you found birth control pills in my room and freaked out. I was being responsible, far more responsible than you were when you gave me no sex education talk whatsoever. I’d already been sexually active for two years. Before I could drive to the health department, I’d walk five miles down Waters Avenue to get there. You grounded me instead of asking questions you didn’t want answers to. 

I was a child who needed healthcare, wanted boundaries, and deserved love. You cheated me of all three. Your running times and education, your marathons and high IQ they don’t impress me any more. Now that I have a child, now that I know what it means to be a mother, I understand how truly first percentile you really are. 

Smoking in Pregnancy

I surprised a friend the other day by mentioning that my obstetrician had me reduce cigarette smoking but not quit during pregnancy with my son. That friend asked me to write a post about the benefits of smoking reduction  pregnancy, and why I think public policy messages should not exclusively recommend smoking cessation but encourage reduction as a viable strategy as well. 

I had an atypical pregnancy. I didn’t know I was pregnant until 19 weeks and had no prenatal before 20. By the time I got proof of pregnancy sorted out to enroll in Florida’s Medicaid program, and made my first appointment with a real doctor and not at a crisis pregnancy center, I was 21 weeks along. I’d stopped using street drugs and diet pills since discovering my pregnancy but not cigarettes. If anything the stress made me want cigarettes more. 

My OB was the perfect fit for me. An older, grandmotherly type who had been a mother and nurse before going back to medical school to be a doctor. I felt if anyone could have sympathy for a patient, for any side of a hospital room, it was her. She told me about fetal nicotine addiction and stress in pregnancy being a danger to us both. She said I didn’t have to quit, but that cutting back was good. The latest research at that time said I should cut my smoking in half. The menthol I sucked down on the way to the hospital between contractions was the best smoke of my life. 

The research has gotten more refined since then. This epidemiology study found the greatest health benefits when smoking was curbed to fewer than eight cigarettes per day, and when third trimester smoking in particular was kept low. This is very useful data. About 10% of pregnant Americans smoke and virtually none are able to quit, but almost all reduce how much they smoke. Clear goals and guidelines of how much to reduce by could help more. 

For example, a pack a day (20) smoker presenting at an 8 week appointment could be counseled on benefits of smoking reduction and offered Chantix or an SSRI to help them titrate down to 12 cigarettes a day by 12 weeks, and 8 cigarettes a day by 20 weeks. I was on 4 cigarettes a day throughout my third trimester, which is low enough to greatly reduce odds of maternal or fetal health complications. 

My son was born full term, at 6 lbs 7 oz, with healthy lungs and 9 and 10 APGAR scores. Far healthier than I could have dreamed of or hoped for when I first learned I was pregnant.