My phone exploded when Jenny McCarthy appeared on Oprah.
"Jenny's got a kid with autism, too. Do you know her?" Oh, the
similarities between her life and mine: both single moms, except
she has Jim Carrey and I don't; both with autistic children, except
she has one son on the spectrum and I have three; both blonde, no
My sons are 6, 4 and 2 and all are affected by autism spectrum
disorder in various ways. One bangs his head on the wall, another
experiences tremors of anxiety and the third is prone to accidental
self-injury. They all have substantial speech delays and the
world's most beautiful brown eyes. So, you can call autism a
disease, disorder, difference or disability. Call it whatever you
want, but I love my brown-eyed boys.
I have raised them alone since the birth of my youngest son. I
am a stay-at-home mom who is never at home. I wake up, burn the
Pop-Tarts, deal with meltdown number one, make my oldest son's
Celexa-Adderall cocktail, fix lunches, deal with meltdown number
two, get us all dressed, deal with meltdown number three, brush
teeth, load up the car, deal with meltdowns number four, five and
six and head out for the day. It's not unlike what other moms do,
except maybe for the meds and some of the meltdowns, but I'm sure
other people burn Pop-Tarts, too.
My friends help me keep one foot in the world that isn't
autistic. They take me out and remind me that red wine is
delightful, the perfect wrap dress accentuates any figure and I am
not alone. We go to dinner, the theater, clubs and concerts. We
even got tattoos one night. Mine says "brave."
I once saw a bumper sticker that said: "Autism. Be
understanding." I wish I could buy a million of those and plaster
the planet with understanding. I have countless stories of dirty
looks, malevolent avoidance, rude comments and nasty laughter. If
it breaks my heart when my sons experience cruelty, then I can only
imagine what it does to them. It still surprises me to learn that
kindness is the exception and not the rule.
Just before Christmas, two of my boys were invited to a birthday
party, which consisted of a trolley ride around downtown Chicago to
look at lights and dinner at the Rainforest Café. It was a recipe
for disaster, I know. But, as a single mom, if I want my special
kids to have typical childhood experiences, then I have to take
them. Nobody else is going to do it for me.
So off we went to the "Big Green Frog Store." At dinner, neither
of my kids was remotely interested in being seated. They were
exhausted, famished and overstimulated. The café features roaring
animals, flashing lights and a steam waterfall. Sensory overload
was complete and I was one woman waiting …
For the volcanic meltdowns.
These involve crying, screaming and sometimes biting and
bruising, but I never know how long they will last, maybe five
minutes, maybe 50. They might happen for no reason, or maybe a tiny
reason, or even a real reason, but they just rage and rage and
batter and last. Thankfully, the volcanics usually alternated
children; my sons never had them simultaneously.
Until that night.
My oldest son was flailing; he lost control of his body. It was
unlike anything I had ever seen before. The autism in my kid this
night was a stranger to me. What was happening to him? Why was he
hitting me? Why was I having to restrain him? What was going
Meanwhile, my middle son was "sandbagging" all over the place.
He's a very meaty kid, with a special gift for going limp in the
most inopportune moments. If he can't deal, he collapses into a big
blob. Sandbagging is extra-special when accompanied by the
torrential wail in public.
Management complained because my kid was lying on the floor.
Customers complained because my kid was screeching without coming
up for air. I couldn't complain because this was my life.
I gave up. I headed for the exit. I needed man-on-man defense
for this situation, but I was alone. And then, my oldest son ran
off while I was waiting for the valet. Should I save my kid from
traffic yet abandon my other boy or let one son get hit by a car so
that my other one is not kidnapped?
A security officer had mercy on me and retrieved my son.
Panicked and sobbing, I strapped my kids into the car before they
could run away again and I sped off. I didn't even wait for my
change. The valet got a $10 tip that night.
I didn't know how to make it home. I wasn't sure how to drive. I
was shaking. I had witnessed a monster and it horrified me. Daily,
I beat the autism bully down with therapy, intervention and tender
love. Tonight, it came at me with fangs and hair on fire.
I barreled forward and used my cell phone to institute the red
alert. I usually don't need someone else to help me through the
ugly bits, but, in that moment, I did. My dad answered, the man
with a doctorate in listening.
And then he spoke: "You need some help. You can't do this alone.
And that was it, but I got it. I was human, not a superhero. I
wasn't expected to survive that outing alone. I should have help
with this. I should have a two-parent family. I should have
But, I didn't. It was just me. I had to drive that car and carry
those kids inside and put them in their pjs and pay the sitter. I
was just going to get us home. So, I sobbed and drove, carried them
inside and put them to bed, but I skipped the pjs. I paid the
sitter and decided a hot shower might help me quit crying. As I
undressed, I walked past the mirror.
And there it was, in the small of my back. My tattoo. I was
brave. I remembered. I thought of all I had been through and
suddenly that night was nothing. It didn't even come close.
I could do this.
I was brave.
I didn't lose courage that night, it's just that I was
surprised. I had known autism for so long, I thought we were
familiar acquaintances. But the autism bully with fangs and hair on
fire was unexpected. Who's this guy and what's he doing to my kids?
Go away. You don't scare me.
Soon after, my best friend gave me a framed print. She found the
font I used for my tattoo and reprinted it for my wall. She said,
"You don't need a tattoo to remember that you are." And there it
hangs in the middle of my house. I pass by it a few dozen times a
day and I remember that I am.
Jennifer Wheeler is an Evanston mom with three
Jennifer Wheeler Wood is a Plainfield mom of seven and a frequent contributor.
See more of Jennifer's stories here.
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