A Neurodiverse Universe: Parenting a child with autism

As a mother of a child with autism, I have realized how broad the spectrum is. I was in elementary school the first time I heard of autism. I was reading The Baby-Sitter’s Club series (back in the eighties), where one of the girls babysat an autistic girl—a piano prodigy. Though some autistic children have special abilities, keeping in mind that not all do (nor should they have to, as if they need to justify their autism) is vital to not only accept them but appreciate them.


Ultimately, autistic children are just children who want to be loved, have fun, and may know more than they can communicate.


As a homeschooling mom, I’ve learned that part of teaching is not to make my daughter learn how I learned or teach how I was taught but to learn how she learns and then teach accordingly. I’ve learned that autistic children often express themselves differently, even from other autistic children. My daughter may not always tell me she loves me (at least without prompting), but I have recognized that when she asks for a hug, that, to me, is her way of telling me she loves me. I’ve learned to be more precise when asking questions. For example, when we were studying Galileo, and I asked her what Jupiter had four of, instead of moons, she said, “Consonants.” (She might have outsmarted me there!) I’ve learned that I need to understand that she sometimes has reasons for doing what she does. For example, as soon as we entered the accessible stall in a library bathroom, she tried to elope by crawling under the door; it took some strength to keep her with me. At the time, I just thought she was being disobedient. It wasn’t until weeks later, when we visited another public bathroom, that I figured out the hand dryer terrified her due to her sensory issues.


When you have a child with autism, you learn to be more intuitive and know when to extend that extra grace. We learn from them as much as they learn from us.


Learning about autism (and the terminology surrounding it) is ongoing. Some children don’t want to be labeled autistic, while others see their autism as making them unique, but one thing is for certain: We don’t need to fix autistic children because they are not broken.

The Comely Bones

She didn’t yet have a name,
but she had a job—
to someday watch over the sister,
whom she would never outpace in age,
after their parents had returned to Heaven;
to watch over the sister
who some saw as a cute little dot
on a wide spectrum—
this blitheful child who wrote in smileys
& spoke in echoes
& laughed at movement,
not jokes,
& whose dreamlike gaze
noticed the page numbers
but not the words.
But as the mother looked at her rapidly expanding belly
that contained an entire universe of being,
she wondered if this unknown quantity
would outpace the one outside her body;
for every parent’s worry about their child
whose needs were different than most was
Who will love them when I am gone?

Baptism in Birmingham

Two magnolias

You enter the doors of the temple—the kingdom of God on Earth. You know you’re unworthy, for you just had a shot of espresso before you rode the bus to Birmingham, which is why your breath smells like peppermint. Don’t you know that your breath only smells like coffee and peppermint? You know they’ve heard of a peppermint mocha, right? Of course, none will claim to know what that even tastes like, and they will hurriedly let you know if you happen to catch them at a Starbucks (especially on a Sunday), they will say they’re getting a hot chocolate, even though Joseph Smith said no to hot drinks. What about soda that’s been left in the car too long?

You are with the group of other Mormon church members from the Fox Run and Pine Forest wards (whatever possessed them to call churches “wards” and youth groups “institutes”?) who are there to do baptisms for the dead. How aggrieved you became when you had to explain such a practice to the Gentiles (what the LDS call non-members) for the umpteenth time. “We do not dig up dead people and dunk them in water. We do it by proxy,” you would say, only to discover that most people don’t even know what the word proxy means.

You discovered that no one hardly knows anything about Mormons but polygamy, even though they stopped that practice over a hundred years ago, but it hangs on them like the wet white jumpsuit will hang on you after you’ve been dunked for the fifteenth time for people you don’t even know—names that may as well be out of a phone book. Even though you think you have possibly just saved fifteen people who didn’t get the chance to hear the Mormon gospel (“the plan of happiness”) in this life, you can’t help but think that you look like a fatty in this jumpsuit.

However, you know when you step into the warm water of the baptismal font after having been barefoot, watching the same thing happen over and over, your feet will feel like they’re on fire, for they are always like ice in this castle, which will lull you into a state of what feels like suspended animation. Something is hypnotizing about repetition.

You’re supposed to be thinking about God in here but instead, you’re thinking about what you want to eat when you leave and how praying over fast food never hurt anyone. You’re thinking about all your tithing money going into these buildings that not even all Mormons can enter because they’re usually breaking the law of chastity or tithing. You’re thinking that this seems like a boring way to spend eternity, but it’s still better than the alternative. You like that the Mormons have three heavens, but if you want to have sex in heaven, you have to do temple work. Of course, men can have more than one wife up there, and you find yourself admitting that that’s pretty clever—what is against the law here, the government can’t control up there.

What happens with widows who loved both husbands? You think this is why families can’t work in heaven. You just want to be an angel, like Cary Grant (except still a girl) in The Bishop’s Wife, but maybe human-turned-angels are gender-neutral. That’s what would happen if you went to the terrestrial or the telestial kingdom. Your sexuality is taken away.

But if you are honest with yourself, you know you don’t believe in this Church—you just ended up dating that boy who broke up with you because you wore a sleeveless blouse; by the time that happened, you were sucked in. They are nice to you, unlike the people who don’t care about your soul—who like you for you.

It is your turn now, and you are thinking about how you can’t wait till it’s all over and you can dry off, and then they put their hands on your head and confirm those same names as members of the Church of Jesus Christ of Latter-day Saints.

You want to believe in all this so much, but it’s not happening; however, you won’t leave it all for another seven years, because one day, you went to Utah, seeking a husband, where there is every cut of white meat imaginable—Scandinavian, British, German, and a blend of many others—only to find something else.

You found your way out.

All these people who are with you today, you won’t even know ten years from now. When they see you in town, some will be polite enough to smile and say hello, but others—those who you were closest to—will act like they don’t know you, except you won’t care, for your experience with it all will make a great book.

I could come down and tell you all this, but you won’t believe me. You will have to find all this out for yourself, and because of all this, you will never really go to church again, except on Christmas and Easter. You will be a Christian without a church, like a man without a country, but you will be just fine.

You will marry a man who will not expect more from you than even God Himself does. You will be free to just be.

You will have one child, not five—at least that’s how it is in the year 2020. You still have a few childbearing years left.

However, when you find out that your child has special needs, you will remember something that you learned from these people: that the devil cannot touch such children, for they are innocent forever.

You will remember many good things and will be grateful that you were once one but are now no longer—that you are better for having come into it, just as you are even better for having left it. 

 

Micropoetry Monday: The Rainbow Spectrum

Rainbow spectrum.jpg

“Look into my eyes on purpose
& don’t repeat after me,”
she often said to the little girl
who didn’t move mountains
but built them,
even as she would someday
climb them.

No two snowflakes are alike,
& she melted in her mothers arms—
not the designer label her mother had hoped for,
but the special label
that made her love her all the more.

For her,
motherhood was spent
smacking tags on clothes in the store
& plush animals at home,
on spinning pennies
& Minnie Mouse by the tail,
on “crashing the checkers”
of Connect Four,
only for the tray to be filled up again
with what she called mustards & ketchups.
Though such activities became
repetitious,
the payoff was in her daughter’s smile
that lit up her face like a gloriole
& with the laughter that filled a room
with mirth.

Micropoetry Monday: Hymns of Motherhood

Hymns of Motherhood

The Shutterfly Edition

He measured his time in semesters,
she, in trimesters.
His work was in bettering himself 
even as hers was 
in raising a child
who would want to do just that.

A Rock is a Hard Place to Sleep

She’d brought the Precious Moments snow globe
that played “In the Good Ole Summertime”
& the ladybug that turned the ceiling into a celestial night sky,
wrapping them
in her swirl-pink bathrobe,
scented with Dove,
so that when the sounds
of the Interstate overhead
vanished into thick air,
& the lights were turned out
in the shabby shelter
that was their 6-week purgatory
for being poor,
it would be just like all this homelessness business
was but a bad dream.

After she lost her son,
she tried to live everyday
with her daughter
to the fullest—
tried to capture every memory
in 1000’s of words
& in 100’s of pictures–
but found that in trying
to document it all
at such an incredible
level of intensity,
those moments of
just being
disappeared;
she found that the future—
some of which may or may not
ever happen—
was stealing from the present
that she tried to hold on to too tightly,
for it so soon became the past.

Thursday Evening

Her evenings were spent
not shuttling her child
to practice or lessons
or herself to the next job
but eating a home-cooked dinner
prepared by her husband,
watching “Wheel of Fortune,”
reading and singing to her daughter
and asking her the questions
only she could answer
but could not,
for her little girl
was a brightly-colored door
with a panel of frosted glass
that was shatter-proof
and a lock that was foolproof.
Sometimes this mom went to an event,
and sometimes she made it to the Y,
for she believed in getting your money’s worth
out of a gym membership,
not a buffet.
She was an anxious person,
understanding that just as some drank
to silence the voices,
she sometimes had to take a pill
to silence the stories–
a temporary solution to
“Writers’ Flow.”
She tried to remember to tell Jesus
to let her mom know she said, “Hi,”
but sometimes she forgot–
just as she forgot if she shampooed her hair
until she squeezed the green gel
known as Prell
into her hand
and her muscle memory kicked in.
She’d put the clothes in the dryer
and forget to turn it on,
take something out of the oven
and forget to turn it off.
She’d try to tamp down her anxiety
when having to watch a movie
without closed-captioning,
feeling mentally exhausted
trying to piece together
what she did hear.
Maybe being able to see the words
was why she had become a writer
and why,
when the hustle-bustle of the day
died down
and her little girl had been put down
for the night,
she could lose herself in all the words
she could not see.

Micropoetry Monday: Realms of Motherhood

horse.jpg

No two snowflakes are alike,
& she melted in her mother’s arms—
not the designer label she had hoped for,
but the special label
that made her love her even more.

Her orderly little house had been turned
upside down,
her life inside out,
& she fought to keep up with the tot
she prayed would one day outrun her.

Homeschooling would protect her
from the products of ill conception,
but she could not teach her everything,
& so she had to lead her to the ones who could.

I loved the child that was a part of me,
& equally part of the one I loved.
I loved the child I knew yesterday & today,
but would not be forever.

She is just what I would have chosen,
& yet she was created without conscious thought
the product of an autonomic, biological response
to an act of love,
ignited by whiskey.