autism

Crazy Like Us

My daughter is on the autism spectrum. She’s high functioning enough that you might not notice right away, but spend enough time with her and it’s hard to miss. The aversion to direct communication. The stumbling articulation. The repetition. The tantrums. It all adds up.

I have rapid-cycling bipolar disorder, compounded by severe generalized anxiety disorder and panic disorder. Most people who know me know this now, but for over a decade, I hid it under oscillating workaholic tendencies, party girl antics, and homebody inclinations. Even with medications and a treatment team and vigilant self-care, the struggle to stay balanced is a constant one. I’d been fighting for everyone else for years, and I’m only now learning how to set boundaries and stand up for myself.

Ava and I have different struggles, but in many ways, we are the same. We struggle to make eye contact under pressure. Our tempers are fast and hot. When things get overwhelming, we retreat to calm ourselves. But most importantly, we understand the world around us through stories.

When Ava was first diagnosed, one of the biggest hurdles we faced was her speech delay. Her mind was moving faster than her ability to communicate. It made it hard to understand how to best meet her needs, but as frustrated as we were, she was even more so. She would often end up distraught, only further obstructing her ability to get through to us.

But then we found a workaround. See, Ava’s memory was second to none when it came to her movies and TV shows. She might not have been able to put her thoughts into her own words, but she could recall scenes that conveyed what she was feeling and recite them verbatim. Over time, I realized that her rambling was not without purpose, and started paying closer attention. It got easier. Not easy, but easier.

When I was first diagnosed, I was frozen, terrified of the sound of my own voice. I felt like my mind couldn’t be trusted, like I was mourning the death of my former self. No one around me could really understand what I was going through, and I couldn’t find the words to explain it, which only made me feel more alone.

But then I retreated into fiction. I read voraciously, I binge watched television, I collected movie plot lines like a connoisseur of terrible cinema. I’d write awful poetry, pen trite short stories, begin novels that would never be completed. But it calmed me and inspired me. These fictional figures, whether they were from my mind or someone else’s, brought me back to my voice and cleared my mind. It got easier. Not easy, but easier.

Stories continue to play an important role in our lives. For Ava, it’s not just a manner of self-soothing, but a means of learning language, geography, science, history, math, and more. For me, it’s not just a form of self-care, but a way to explore the rapid fire ideas searing through my mind’s crossed wires and find organization in the chaos. Stories save us every day of the week, and twice on the bad days.

Not everyone understands our connection to stories. I can’t tell you how often I’m lectured as a result of my leniency with Ava when it comes to iPad and computer play. They’ll cite studies and experts who deride screen time for children without consideration for or knowledge of Ava’s history, ignoring the fact that autism manifests differently for everyone on the spectrum. And when I retreat into reading and writing with a fervor unmatched, the assumption is always that the screws have come loose. After all, exactly how productive or therapeutic can something as trivial as a blog actually be? God forbid I defend my parenting or self-care; then I’ve clearly lost my mind.

But the fact of the matter is that Ava and I are different. We will never be normal. We will always need to find our own way to navigate life. We have to travel our own path, critics be damned, but truth be told, the view ain’t bad from this road. Call us crazy if you like. I wouldn’t trade our crazy for the world.

And our story is only beginning.

A Mother’s Lament

As a mother, I struggle. I look at my daughter – joyful, smart, strong-willed, independent, opinionated – and I am overcome with equal parts love, pride, and fear. I know other parents get it. You care about that kid so much that you want to give them the world… but then you remember what a scary place that world can be.

I struggle with how to teach my daughter to love her body and herself in a healthy manner.

I try to prioritize physical health and strength. I do my best to demonstrate love of my own body with all its stretchmarks, lumps, and bumps, choking back whispers of shame that stem from a world of photoshopped expectations. But there’s a line, right? How do I teach her to prioritize health without leaning on the language that has propped up those expectations for years?

I dream of a life for her where she feels empowered to own her own sexuality when the time comes, but I don’t want her to hide behind it instead of engaging in emotional connection. I’ve seen the damage associated with placing a high premium on sexual “purity,” and I’ve seen the self-inflicted pain of turning off feelings in the name of sexual expression for principle’s sake. How do I encourage her to embrace her sexuality in the face of headwinds that will push her to put up walls around her feelings for one extreme reason or another?

I want her to view her body as her own without caveat, but I know I need to teach her about the dangers that too often lurk behind a corner or a friendly face and their callous dismissal of that truth. How do I help keep her safe while refusing to plant the seeds of cultural victim blaming?

I worry that I’m teaching her the wrong things without saying a word. Does she notice the time I spend each morning, carefully cultivating the appearance required to precariously balance between professional, frumpy, bitchy, and woman? Is she learning to hold herself to the same standards?

I’m a single mother, and she doesn’t meet the men in my life. I promised myself a long time ago that my personal decisions would not impact her stability, and that she would never view having a man in her life as essential to being “complete.” But is the lack of healthy relationship modeling going to haunt her later?

I look at the statistics and the news reports and the lack of news reports and the bullshit legislation and the jaw dropping court decisions, and I am terrified by the trends that dehumanize my gender to the point that our organs are commodities subject to the regulation of men (and some women) who don’t understand how they work. I am heart-broken and tired. How do I help her to understand why these rights are important, the magnitude of the work that’s been done by those who came before us, and the challenges that are rising ahead of us when these feelings are the last thing I want for her and I don’t have the answers?

I see her fascinated by science, reveling in math, reading voraciously, and am buoyed by her love of learning. How do I encourage her to take pride in her mind and go after whatever her dreams may be, while preparing her for the discrimination and harassment she will face as she makes her way?

I hope to see her grow into a young woman who is unafraid to express herself. I don’t want her to dress or act in a certain way because it’s what’s expected by the world around her, but knowing how the world reacts to such audacious agency, I feel compelled to keep her safe from the cruelty. How can I possibly teach her not to run from herself when I know first hand the kind of pain that comes with running head first into a wall of public opinion?

But I don’t want to raise a self-centered daughter, either. I want her to understand what’s happening in the world around her, and be driven to make it a better place.

As the white mother to a white daughter, I don’t even know where to begin explaining the state of race relations in this country. I want her to understand the bloody sins of our past, the structural discrimination they generated, the state of inequity today, the extent to which we’ve turned a blind eye to the poisoned fruits of our stubborn refusal to acknowledge white privilege. I recently had to correct her when she came home proclaiming Columbus a hero. How in the hell do I undo the continuous whitewashing of American history our schools are designed to reinforce without getting her in trouble with standardized teachers, tests, and administrators?

As the straight mother to a daughter who has yet to express or really explore gender or sexuality (outside of her proclivity for playing the role of badass princess in “Let’s Pretend”), I want her to feel safe to define herself as she sees fit. She’s grown up with a cadre of gay and lesbian “aunts and uncles” from my circle of friends; she doesn’t see a different from their love and hetero love, and I’m grateful for that. But even with the legal system and public sentiment swaying in the direction of equality, there’s still a long road in front of us before people who are not straight and cis have equal footing. How do I send her out to walk her own path and be an ally for those she loves with such hateful battles raging on either side of her?

As someone who manages bipolar disorder on a daily basis, I know the strife and stigma associated with mental illness, and I work hard to break down the assumptions our culture broadcasts about those with diagnoses and not. I am pretty open about my illness with those in my life, though we don’t make a big deal out of it at our house. Mommy takes medication; I don’t hide that. When she asks questions, she’ll get answers. But how do I teach her to understand and empathize with the struggles someone with a mental illness faces when these battles are often buried under the burdens of privacy and shame? Given that she is statistically much more likely to be diagnosed with bipolar disorder at some point, how do I steel her for the antiquated notions about mental health that still prevail as the norm? Hell, before we even get there, how do I prepare a little girl on the autism spectrum to filter the bile that an ignorant society spits out?

As an admittedly privileged mother to a surely privileged daughter, I stand unsure of how to explain privilege and its ramifications. I’ve known poverty, known gender related harassment and discrimination, and mental illness stigma, but I’m not arrogant enough to say I understand the experiences of those who reside at different points in the privilege spectrum, nor can I dismiss that my present circumstances require ongoing reflection to combat inherited privilege. I do my best to listen and learn and use my voice to make a difference when possible, but I am fallible, and sometimes I’m just as much a part of the problem as those I’m trying to reach. I struggle with how to advocate without assuming to speak for a group or hijacking the narrative. How do I teach her to be an ally when I’m not even sure what I’m doing?

As someone who has experienced one of the many possible intersections on the privilege spectrum, I’ve grown to understand that the infinite combinations of personal history and inherent traits create a complex network of unique experiences, all of which provide the context necessary to understand and combat the inequity present in the world around us. The experience of a wealthy or middle-class white woman is not the same as the experience of an impoverished white woman, nor is it the same as that of a black woman, or a Chinese immigrant woman, or a Latino male, or a Muslim practitioner, or a gay indigenous person… the list goes on. Navigating these distinctive experiences to better appreciate and address the culture they combine to create isn’t a simple task, particularly with a cacophony of privileged voices in the background demanding a linear explanation for the chaos they’re a part of sustaining. How do I show her how to see the world in prismatic fashion when black and white are still the trendy colors du jour?

As a mother, I struggle, and I will continue to struggle. None of these questions have easy answers, but one thing is clear: I have to continue to seek them out, because, if we want a less scary world for our kids, it is up to today’s parents to make sure we raise our children to be good, self-aware, socially conscientious people. I love my daughter, and I will gladly wade through the uncertainty and stress and mess of it all because I believe in her… and I know all of our futures depend on her and her peers setting right what we’ve done so wrong for too long.

But for today, I will find strength in her smile and her laugh and her 437,298.5 questions an hour, and find hope in the twinkle of her eye that says we ain’t seen nothin’ yet.

35 Things About Elliot Rodger

elliot

  1. Elliot Rodger killed six and injured thirteen in a Santa Barbara mass shooting before killing himself on Friday, May 23rd, 2014.
  2. Elliot Rodger was a straight 22 year old male from an affluent family who was described as white, but is of Malaysian Chinese descent on his mother’s side. [edited]
  3. Elliot Rodger was may or may not have been diagnosed with Asperger’s disorder; reports vary.
  4. Elliot Rodger was also mentally ill, and in treatment with multiple doctors.
  5. Elliot Rodger was a raging misogynist who believed that there was “no creature so evil or depraved as the human female.”
  6. Elliot Rodger espoused these misogynist ideals due to what he viewed as sexual rejection by women to whom he believed he was entitled.
  7. Elliot Rodger was a massive racist – idolizing white, blonde women, and enraged by white women dating men of other races.
  8. Elliot Rodger was a classist who associated wealth with personal value, assuming he could buy affection.
  9. Elliot Rodger didn’t get this way on his own.
  10. Elliot Rodger didn’t get this way for one reason alone.
  11. Elliot Rodger was incredibly privileged.
  12. Elliot Rodger did not become a killer because he was privileged.
  13. Elliot Rodger became frightening when his privilege morphed into entitlement due to toxic ideologies.
  14. Elliot Rodger became dangerous when his entitlement collided with mental illness.
  15. Elliot Rodger became lethal when he was able to arm himself.
  16. Elliot Rodger was able to arm himself because he was never involuntarily committed, despite being reported to authorities as a possible danger to himself and others.
  17. Elliot Rodger was never involuntarily committed because he was viewed as harmless by the interviewing officers, despite his extensive footprint of hate on the web.
  18. Elliot Rodger was likely viewed as harmless by the interviewing officers because feelings of entitlement and expression of animosity towards women and minorities are not perceived to be real threats.
  19. Elliot Rodger is terrifying to women because the only thing separating him and the other millions of men expressing the same kinds of ideas online and in real life is that Elliot used a gun.
  20. Elliot Rodger is terrifying to women because he is the classmate we never even realized was attempting to ask us out.
  21. Elliot Rodger is terrifying to women because he is the coworker we tried to let down gently.
  22. Elliot Rodger is terrifying to women because he is the man buying shots at the bar we turned down because it was girl’s night out.
  23. Elliot Rodger is terrifying to women because he is that first date we bailed out of because we didn’t feel comfortable or safe.
  24. Elliot Rodger is terrifying to women because he is anyone we never knew we wronged. #YesAllWomen
  25. Elliot Rodger was looking to terrorize a group of people in order to advance social ideals, but despite that being the definition of terrorism, is not considered a terrorist.
  26. Elliot Rodger would probably be labeled a terrorist if his social ideals were associated with a religion not called Christianity.
  27. Elliot Rodger would probably be labeled a terrorist if he’d used a bomb instead of a gun.
  28. Elliot Rodger would probably be labeled a terrorist if his skin wasn’t white.
  29. Elliot Rodger might have been labeled a thug, though, if he was black.
  30. Elliot Rodger targeted white people, which might be why he’s received more attention than any of the shooters in the 117 gun deaths and 666 gun injuries in Chicago year to date.
  31. Elliot Rodger makes us more comfortable if he’s just mentally ill because it makes the problem individual, excusing our culpability in building, accepting and advancing the culture that created him.
  32. Elliot Rodger makes us more comfortable if he’s just mentally ill because it means we don’t have to do anything about it personally.
  33. Elliot Rodger existed because we didn’t take it personally.
  34. Elliot Rodger will happen again if we don’t take it personally now, because cultural shifts start with personal decisions.
  35. If you’re not taking it personally, you’re part of the problem.