I’m super excited to have been invited to join a blog group alongside three talented bloggers. Each week, one of us chooses a topic and we all post a blog entry on that topic, usually on Thursdays.
Here are the links to the other fabulous blogs:
This week, Merryland Girl asked us to talk about a time you were fearless.
A time I was fearless? That would be never. I’ve never been fearless. Never. Not once. Not ever.
The definition of “fearless” of course suggests the absence of fear. I’ve never existed in such a state. Wired to be anxious, I live in a perpetual state of fear. The fear ranges from the smallest thoughts of, “Will I be late?” up to the largest nagging doubt of, “Will I fail miserably?”
I’ve acted in ways that seem fearless, but while doing so, fear roiled under my surface. Moving to Los Angeles in my early twenties knowing exactly two people and having no real source of income? People thought me courageous, but they couldn’t see the fear behind my mascara-caked eyes. Starting law school at one of the best law schools in the nation, with a husband and a two-year-old in tow? I put on a brave face, but my hands shook when I signed those loan papers (and let’s not even discuss the amount of Mylanta consumed in the weeks leading up to the bar exam). Taking my middle daughter for autism testing? I asked intelligent questions and did not shed a tear, but inside, terror pulsed through my veins.
To me, I guess, there’s a difference between being fearless and acting fearless. But maybe there isn’t. Maybe I’m merely flirting with semantics. Maybe to be fearless means to feel fear but to act anyway. If that’s the case, then I have, indeed, been fearless. I’ve written about a few of those moments: walking into a room to say goodbye to a hospice patient who’d already passed; up and moving across the country – now for the third time. But I’ve never said much about the fear I felt – and continue to feel – regarding my daughter’s autism.
Maybe I’ve just been too afraid.
The (as of today!) Eleven’s path to an Autism Spectrum Disorder (ASD) diagnosis was indirect, jagged, and long. Although I had a high-risk pregnancy (my age and a missing blood vessel in our shared umbilical cord), my delivery was great – easiest of the three, in fact. She hit all of her developmental milestones except crawling, choosing instead to invent a modified “butt scoot.” And as she grew, she seemed not only “normal” (the polite word is “neurotypical”) but also gifted. I saw in her behaviors I saw in her older sister, who’d been deemed gifted after a first-grade IQ test. She liked to line up her toys. She used big words. She had an amazing ability to re-create pages out of the Crate and Barrel catalog using her own stuff – at the age of three. We really had no clue. Even when she struggled in pre-school (refusing to sit in the circle, wandering off to do her own thing, only engaging when doing tactile activities), we didn’t think anything was really wrong (and neither did her teachers).
Weeks before her sixth birthday, we moved from Chicago to suburban Evanston. The Then-Almost-Six ended up with a fantastic teacher, and she stayed with her for Kindergarten and First Grade. Any concerns we’d had in the past about in-school behavior vanished; she thrived in every relevant area . . . except one: peer relationships. We didn’t think much of it then, or for the next year. After all, we’d just moved, and we were all still settling in and meeting people and forming relationships. It took time, for all of us. And so we wrote off her struggles to general life tumult.
But soon we couldn’t ignore the frustration connected with her inability to form and maintain friendships. She’d grow irate, sometimes outright angry. We didn’t know how to help. We debated taking her to see “someone,” but I struggled with that, not because I am opposed to psychologists, but because I didn’t know how to explain what exactly we thought was wrong. And then, one summer day, I watched my daughter struggle to break into a group conversation at the park near our house. She tried, but she didn’t have the tools. The other girls were discussing dogs; when the Then-Eight walked up, she started talking about baseball. The other girls couldn’t understand why – and my daughter couldn’t understand why they didn’t get it. And so we found a psychologist near our house and brought her in for some help.
The doctor spent part of spring and an entire summer working with our daughter and, even though we met with him each week, he’d never mentioned what he thought was going on. So, of course, I asked. And, it’s funny, because I don’t know what I thought he would say, but I know for sure I never, ever, ever thought he’d use the word “autism.”
He tried to downplay it, say he thought she was “mildly autistic,” having either Asperger’s Syndrome (she does) or high-functioning autism (which is similar). He gave his reasons: her poor eye contact, her preference to play near but with him, the slightly odd manner in which she speaks. Floored, I instantly filled with fear. Autism had long terrified me – the little I knew. It didn’t take long before the fear grew and blossomed. What would this mean for my child? Could she handle it? Could I?
Months and months of testing followed, each visit, each meeting enlarging my fear. We began with a large, urban autism center in Chicago, one containing a waiting room filled with autistic kids ranging the spectrum. I regularly watched nonverbal children flap and scream and stare. One particularly frightening evening, I watched a ‘tween boy have a total meltdown (look it up – it has meaning to an ASD kid, and it isn’t fun) as his mother and therapist attempted to hold him down and calm him. In those moments, I lived fear. It surrounded me. It filled me. Some days, I swore I could taste it. I didn’t want to be in that room, in any waiting room, talking to any doctor, filling out any questionnaire. I wanted my daughter to be neurotypical. And I feared what it might mean knowing she wasn’t.
Most of all, I feared the future. In those moments, I tried not to think about what my daughter’s life might look like as she grew. The more I knew, the more I wondered: Would she be able to live alone? Hold down a job? Drive a car? No doctor could answer those questions – when I had the courage to ask.
I still wonder about those things. My daughter wants those things, and I want them for her. But the question remains whether she will have them. And I still fear she won’t.
But the Eleven doesn’t know of my fear. And she never will. Because my job – as her mother, as her advocate – is to at least appear fearless. It is my duty to take her to those doctor’s appointments, to that testing. As much as I hate them, I need to put on the professional “Look at me I’m not worried it’s all good” face when I walk into school IEP meetings or chat with her social skills group leader. No matter the fear I harbor inside, I can’t show it. I must appear fearless.
And, in doing so, I suppose I am being fearless.
I’ve learned many, many lessons as I’ve shared my daughter’s ASD journey. I’ve even taught myself a few tricks. One is a game I play where I look at someone random – in a store, in a restaurant, in a waiting room – and I try to imagine what I can’t see. What don’t I know about his or her life? What fear is s/he hiding? Can that person look at me and see the fear that lingers just below the surface all the time?
I like to think I’ve got a good game face, and maybe I do. I don’t know. Maybe it doesn’t matter. Maybe all that matters is that, regardless of how afraid I feel, I step up and do what needs to be done, even if my pulse pounds and my palms sweat. Even if, inside, I am anything but fearless.