Archive for January, 2012

I wish.

I’ve always been pretty organized. I’m just one of those, “A place for everything and everything in its place,” people. I like clear plastic storage containers and laminating label makers. I like hanging folders, color-coded files, and multi-sheet shredders. I like alphabetical bookshelves, DVD racks, and CD stacks. I like drawer organizers, shoe racks, and closets divided up by item type and sleeve length. I like knowing where the juice is in the fridge without looking and always having a spare Sharpie around just in case. I like all of these things. And I miss them.

Having kids changed my perspective on a lot of my organizational minutiae. It made me stop sweating the small stuff in a lot of areas, and it forced me to pick my battles as far as getting the family to comply with my hyper-organizational-ism. So, yes, it’s true that my daughter’s clothes are on pink hangers and my son’s are on blue and that I hang my kids’ clothes in sections: polos, tees, long-sleeved shirts, pants, jeans, shorts, skirts, and “other.” But it’s also true that they both get white freebie hangers from miscellaneous clothing stores and that there are completely weather- and size-inappropriate clothes throughout — and shoved in corners of — both their closets because keeping their wardrobes in check just isn’t a high priority these days.

Yeah, you parents know what I'm talking about.

I see quite a bit of this neurotic attention to detail and simultaneous disregard for perfection in Julia. She’ll insist on opening a drawer in her dresser to tuck in the miniscule amount of fabric from her pink tutu that got caught upon closing the drawer, and she cannot go to bed without putting the night’s book(s) back on the shelf. And yet, she’ll overlook her dolls strewn all over her floor and leave a Lego® minefield in the playroom just waiting to sabotage my bare feet.

I see it in Will, too. Will used to spend hours shredding sheet after sheet of newspaper until he found just the right strip to carry for hours or even days on end until it was soft as silk from constant handling. Or he would bring me a chosen piece of yarn and have me wrap duct tape (actively choosing over masking tape or Scotch® tape) around the end of it until it was just so. But then again, Will couldn’t care less about knocking every item off the bathroom counter onto the floor so he can stand naked on it and watch his iPod in the mirror. His room can be (and he often prefers it to be) strewn with his latest obsession, whether it’s ribbons or yarn or cardboard or newspaper.

Of course, it’s different with Will than it is with me or with Julia. I just like knowing where things are, so I have ways of making that happen and keeping our house running as smoothly as possible. But I can sleep if the jelly is on the juice shelf or there are towels waiting to be folded. Julia certainly likes her drawers neat, but she can leave the house without checking each one for protruding fabric. Will’s fixations, on the other hand, aren’t just quirky habits or personal preferences. Will’s behaviors are actual obsessions and compulsions because Will actually has obsessive-compulsive disorder (OCD). It comes with the autism territory. And it really, really stinks.

This is one of those things about autism that no one really tells you. True, as I learned about autism, I knew Will would have repetitive behaviors. I knew he would most likely lack that social filter that tells us which actions are (and are not) appropriate. But it wasn’t until I read about OCD as part of autism that it really clicked. I understood Will in a different way. I realized that his idiosyncrasies were more than his own peculiar preferences and desires. I saw that it wasn’t simply that he lacked social awareness and hence was free to indulge in his activities without concern for what others thought or a desire to conform. Suddenly, it made more sense to me why Will only eats from plastic spoons. White plastic spoons. And why he has to run in a circle around the driveway before coming in the house. And why he has to come out of his room at bedtime and watch his iPod in the oven’s reflection for a minute before going back to bed. This is OCD. These aren’t just “behaviors” he chooses to stubbornly engage in because he likes them and doesn’t care what we think. These are obsessions. These are compulsions. He doesn’t just want to do these things. He has to.

It’s an overwhelming thing, knowing your 6-(almost 7)-year-old has OCD. And severe autism. And of course then there’s the sensory integration dysfunction, cellular metabolism disorders, food sensitivities, and chronic digestive ailments. It’s quite a lot for a grown adult to handle, let alone a non-verbal child who doesn’t write or use sign language. I suppose it’s a bit ironic that, for someone who craves the order and calm of having each box and file labeled, having these diagnostic labels for my son was initially petrifying. Putting a name on any or all of Will’s traits and challenges made each more real. But now I see that the more I’m able to identify, name, and, yes, label, each of the individual issues that come together to form Will’s autism, the better I can understand him, and hence the better I can help, parent, and guide him.

Of course, it was also an overwhelming thing, 5 years ago this week, when Will was diagnosed with autism. It felt a lot like finding out someone I love had died: That paralyzing pain when his diagnosis was confirmed; the conflicting sensations of drowning in numbness while being assaulted by the migraine-painful assaults of every sight and sound; the denial and bargaining and grief. I remember that day. That hour. That minute. That very second. A sparkling crystal bottle of purple light slipped from the gilded shelf of my soul and shattered into stabbing shards for my heart to absorb while the light, with nothing left to contain it, slipped from my core into nothing.

In the Jewish tradition, we mark the anniversaries of the passings of those closest to us through rituals of prayer (Kaddish) and candlelight called Yartzeit. And so, every year on January 23rd,  I remember that day in 2007. It’s a bit like a Yartzeit for that shattered piece of my soul, for those dreams I held for Will, for the expectations I had of my little family’s future. I mourn my old life and the life I had planned. I mourn the days of being able to make sense of everything, of being able to create order out of any chaos with little more than a label maker and a scrub brush. I mourn the days of thinking it remotely mattered which shelf the juice was on or whether each light switch was labeled. I give myself that day to mourn and remember, and then I let go, remind myself to live each day with gratitude, and move on.

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Recently, one of my favorite bloggers, Jenny Lawson (aka: The Bloggess) came out publicly about her struggles with crippling depression and self-harm issues. Her naked honesty and raw expression of pain was intimate, arresting, and bravely self-aware. Thousands of people were moved by her words, writing, via site comments, direct messages, and emails, to this usually irreverent, amusing girlfriend of a blogger with words of comfort, support, and encouragement, or with stories about their own challenges and hidden fears. Not generally one to leave blog or article comments, I added my support to the mix and told Jenny (and the blogosphere) that I, too, struggle with depression.

A few hours later, my girlfriend, Holly, noticed a link to the Bloggess’ article on my Facebook page and asked whether I’d be addressing this issue on my blog. I’d been considering it, especially because Jenny’s post had touched on the issue of isolation – how those who are depressed struggle to achieve normalcy, and then, when they get back to their “norm,” they find there’s really no release or reward because they’re buried under all that went undone while they were “under.” I find this strikingly similar to not only my own experiences with depression but also to how life is when raising a child with special needs.

So I was tossing some ideas around, and I told Holly I would write this piece. But the truth is, even now as I type this, I’m wondering whether I’m brave enough to really share it. To really tell you what it’s like to live in the bell jar. I wonder if I can, because writing about depression and isolation takes me to a dark place. It takes me to that small but powerful black hole in my mind that occasionally, and for seemingly no reason, begins to suck in everything around it until my entire self is consumed in that blackness.

When I was 19, I read Sylvia Plath’s 1950s classic, The Bell Jar. Most people read this novel as part of an English class assignment at some point and find it beyond morbidly depressing and nearly impossible to slog through without drinking. But I read it because I was an English major, so I pretty much devour every book that comes my way. I knew a little about this novel by reputation, so I wasn’t surprised to find in its pages a bleak landscape portrait of a hopeless life. And I wasn’t repulsed or morbidly fascinated by the strangeness of Plath’s mostly autobiographical take on the world. I didn’t find it odd or scary or hard to read at all. I found it comforting. I realized I wasn’t alone.

From a very young age, I had experienced bouts of depression, some nothing short of crippling, making it nearly impossible to get out of bed, while others were mild enough to be little more than phases of annoying moodiness. I sometimes felt alone in crowds, unable to join in fun activities with peers, tired when rested, and lonely even when home or at school. I felt trapped and scared, always on the periphery of things, and not really sure why it seemed like no one else felt quite the same way I did. This was depression for me as a kid.

I remember being about 7, crying in the family room of our southern California home, and when my mother asked me what was wrong, I said, “I want to go home.” She hugged me and said, “But you are home.” And I knew that, but I just had no words for how isolated I was in my own mind, how bereft and empty I felt. Homesickness was the closest emotion I could express to the yearning I felt inside for a sense of peace and stability, the longing I had for emotional normalcy and knowledge of my own security. I was 7. And I was depressed.

Still, on the outside, most of the time, I was a pretty normal kid. And through middle and high school, I managed to keep my depression to myself, at least outside the house. I was actually fairly outgoing and involved in school activities. I held part-time jobs, I had boyfriends and went to football games and did all that typical adolescent stuff. And the majority of the time, I was really fine. True, sometimes I was faking it because I knew that’s what was expected of me. But mostly I was ok because I was busy and challenged and determined to be normal. Still, I’m sure my close friends from high school will easily remember me sitting alone writing morbid poetry when I was in a funk. But people don’t really think of Honor Roll students in preppy clothes who can still answer teachers’ questions while writing in their journals as “troubled children,” so I kind of coasted along.

In fact, it wasn’t until the early 90s, when I was in high school, that depression became something people really talked about. That was when Prozac came on the market, and depression became less of a dirty little secret and more of a treatable medical condition people started seeking help for openly. But even with depression more out in the open, I didn’t know that’s what I had. I just knew sometimes I was really, really sad for pretty much no reason.

Around that time, I had this one truly amazing teacher. It was my senior year in high school, and he turned me from a preening, self-impressed, flowery writer into someone who could appreciate the deliciousness of simplicity. He gave me the gift of telling me I wasn’t as good a writer as I thought, along with the knowledge that I could be and the tools to do so. And so I wrote. I wrote and wrote and wrote, and everything I wrote, this teacher read and marked and really worked through with me because he saw my potential.

He also saw the underlying sadness of this girl who was bubbly on the surface but empty in the eyes. He pulled me aside one day and said, “Next year, you’ll be in college, which is where you really belong. You’ll be challenged in ways you can’t imagine yet, and you’ll be free to learn who you really are and what you can really do. Just wait. Hang in there.” And because he’d paid attention to me, because he’d listened, because I felt like he actually knew what I could do and who I was inside, I listened, and I waited to burst free like a caterpillar itching to escape the cocoon.

That same year, at 17, the depression got worse, and I asked my parents to put me in therapy. My dad thought therapy was a big load of crap, but my mom was supportive in this, and so I went to the first of what would become a long line of therapists, psychologists, and psychiatrists that leads up to the excellent counselor I talk to these days.

It was a bit of a family secret, my depression. And I felt ashamed that I couldn’t control my own mind, master that black hole. Sometimes, it seemed like therapy made things worse because all I was doing was talking about the very things that made me so depressed. But over time, I learned better coping skills. I learned to avoid the things that triggered my depressions, to see myself slipping before I fell, to make myself get up and move and breathe and live when those were the last things I wanted to do.

And finally, when I was 20, everything came to a head. I was in the worst depression of my life. Coping skills were worthless and nothing, nothing seemed to help. My mother found me a phenomenal doctor, and I sat in this woman’s office week after week, month after month, trying to find a way to climb out of the black hole that had consumed my life. And one day, she said to me in her lilting accent, “Tara. Present stress brings up past trauma.”

And that was it. I realized, in that moment, that when I allowed the black hole to expand, it didn’t suck me into nothingness. It drew me in to a place where only the bad things lived. So I was dwelling in a movie theater that played only the worst reels from my life, and that brought up only the worst feelings. My current crises weren’t unconquerable obstacles in and of themselves. Rather, I was trying to fight them one-handed from the front while sword fighting my past with my other hand behind my back.

It’s a bit like smelling coriander and immediately being transported in your mind to the last time and place you experienced that scent. Only coriander is nice and pleasant, and depression, if it had a scent, would be more like sulfur and brine.

So I learned to make peace with the past, and, just as importantly, to leave it there. I learned to deal in the moment with the crisis of the moment without letting my current emotions be compounded by the scent memories of my past. I slip sometimes, and I even fall still. But I get back up and keep moving because that’s what life is: motion. And although I loathe that black hole in my mind, its presence and impact on my life is exactly the thing that lets me know that I can handle nearly anything. It’s what tells me that I can be the strong mother my children need, that I can be the rock they lean on, that I can live with Will’s autism and teach him to live proudly with it as well. It is part of me, but it does not define me. Only I can do that.



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