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.
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