Dear Future Roadmaker

It’s still April, still Autism Awareness month. I’m thinking, as I so often do, of all the people I have met on my journey of raising a daughter with special needs.

There have been some wonderful teachers and some exceptional therapists (physical, occupational, speech and language, to name a few). There have been good hearted caregivers, van drivers, and medical professionals of all kinds that have made a huge difference in her life, and mine. There were, and are, folks from various agencies providing information about and access to services and assistance. There has been an unfortunate number of people from each of those categories that were not helpful, supportive or kind as well, and a few who brought great distress to Bink and to those who love her.

And then there are the other parents. I am a woman of many words, but I cannot adequately find the right ones to describe the love, support and comfort I have found in a tribe of others who are parenting an individual (or two) with special challenges. Most, but not all, are mothers. I’ve known some for over 20 years, and some less than a year. I am certain there will be many more I’ll come to know along the way. Some have children with multiple or well defined diagnoses. Some are parenting in the grey zone, struggling to find their children of all ages the help that might coax them to leave the house, or find a little job––a foothold in a world that has little patience for those who look “normal” but struggle to function on their own.

We lift each other up. We listen deeply, hearing the unsaid words beneath and between the audible ones. We try to check in on each other. Sometimes, it’s as simple as a ” How is _____ doing?” And a sigh or a quiet ” Just OK.” can speak volumes. If one of us learns of a new way to get help or a new service, program or activity, we want to make sure we share that information. We also understand how very possible it is to have no time or energy to communicate for many months at a time.

So many parents have helped me along the way. It’s important for me to try to do the same, especially for those with younger and/or more recently identified children. The following poem came from this place of deep appreciation and desire to be there for others who are walking the same road.

Dear Future Road Maker

I promise
this will pass.
Not the diagnosis, of course,
not your cellular memories
of initial shock, sadness, despair.

But this crisis,
the one that’s shredded
your equanimity,
kept you up some nights
for months,

the one that involves biting
and teachers,
veiled threats from
Those Who Decide
that Johnny may not be appropriate
for their coveted program,

the lauded school
that took
five meetings,
twelve months,
most of your energy
and an attorney
to finally welcome him
into their fold,

It will pass.

Toilet training:
Above all
don’t despair,
I can tell he’s going to get it,
nine is not too late
in our world.
Give it time.

Your current devastations;
Johnny rides the short bus
and there’ll be
no prom,
no diploma,
no college or
wedding or
career—
this will pass,
give it time,
these things will fade
into insignificance,

and besides
short bus=fewer students,
fewer stops,
less sensory overload,
and sometimes,
a kinder driver.

There are special proms,
if he is so inclined,
and nice certificates
of completion, now.

Take a breath,
safeguard your energy,
for you will need
every precious bit.

Choose your battles,
don’t try to war
in many places
at once,

and know this:
I am here,
and there are many of us,
veterans who faced
that forest,
stepped into the dark
growth and
trod the faint
paths left
by those who came before us,
and we are
making roads of them.

Don’t underestimate yourself
or your son.

You will both grow callouses,
you’ll know such triumphs,
and despairs you fear
will wreck you.

They will not.
You will emerge tougher,
a warrior advocate,
and we’ll be there,
all the road makers,
cheering,

and someday
that documented
list of deficits,
all his Johnny-can’ts
and Johnny-won’ts
will cease to faze you.

Mama lion,
future road maker,
mark my fervent words:

Your child,
son of your heart,
will surprise you
and amaze you
and make you
very,
very
proud.

–Melinda Coppola

Daisy Bell

I’m showing my age, and proudly, when I ask this—do you remember the sweet old song called Daisy Bell?

“Daisy, Daisy, tell me your answer, do/ I’m half crazy all for the love of you…”

Those lyrics and that tune lodged itself in my memory when I was nine or ten years old. I can clearly visualize my Aunt Gloria—a professional singer in her day—leaning over the metal cage in my living room and singing that song to Daisy, my little blond guinea pig.

I’ve always loved the simple flower with the unassuming face and the heavy Latin name of Bellis Perennis.  A recent prompt about flowers in a writing group brought forth this little poem:

DAISY

I invited a Daisy to sit with me
under the shadow of a splendid green tree.

The flower politely declined my invite
to rest and converse in the cool filtered light.

Shade, she said, is not my friend.
I’ll lose my petals, my stem will bend.

Give me the sun on my upturned face
and I’ll blossom and multiply all over the place.

Daisy, said I, it’s clearly true
you are my favorite, my favorite is you.

No deception, no thorns, could possibly hide
in your bright yellow head, or your petals so wide

Your beauty is honest, and simple, and true
as flowers go, Daisy, my favorite is you.

 

–Melinda

 

 

Receiving the darkness

The word solstice was born from the Latin sol ( sun) and sistere ( to stand still). 

 

Solstice, winter

This darker interlude
could be a meditation,
a reckoning with the deceptive
nature of time.

The exacting practice
of being present

is to show up
for each round moment
as if it were everything.

This is what might save
me, or us—
the stilling to receive
each bundled particle of time,

and if we get really quiet,
and keep the flame behind
our closed lids
fixed on the darkness
before us,

we notice it is leaving
at the instant it arrives.

In truth
there is none such transition,
no arriving, no departure.

It is all a single stroke
of paint
on the mortarboard
of existence.

 

“ It’s all the same f—-ing day, man.” —Janis Joplin, sage disguised as an addict with a glorious set of vocal chords.

As a child, I noticed the shortened daylight only well after the length was returning to the days. Think late January in the northeast US, when the sun slips away almost a full hour later than it did when winter knocks proper on the door. Once I recognized this pattern in myself, it became metaphor for oh so many things.  If it’s mostly always getting lighter just when I notice the dark, then surely I can and will sing right through.

-Melinda Coppola

 

 

 

 

Arrivals

I’m posting this a day before my daughter’s 26th birthday. I’ve always felt, with certainty, that we were meant to incarnate this way, as mother and daughter, at this particular time in the life of this planet. I don’t need to know why, because I know it’s true.  Happy birthday, Bink. You are the best gift ever.

The Room Where Light Meets

Perhaps it began in a vast,
cloud filled room,
backlit with stars
and random flashes
of lightening,

or

the distilled bright
of a hundred
thousand dawns
that traveled,
speed-of-light style,
to their meeting place

to coalesce
perfectly and
right on time,
to kneel as pure light
before
the Beginner
of All That Is

where we
each received
our assignments,
and that

ethereal datebook,
days marked
in celestial
purple ink

to mark your conception,
and your birth,
full enspiritment,
yours as child,
mine as mother.

Perhaps there is no
random,
no haphazard,

perhaps we are all
always
right on time.

 

–Melinda Coppola

The Meaning of Compassion

The Kuan Yin

She keeps watch in the warm corner of my bedroom, her bearing almost more regal for the rivers of cracks and generous chips that mark her faded turquoise. Her right hand, the deliverer of action, folds into Gyan Mudra, the gesture of consciousness. Preparing to take her picture, I haul myself into the present moment as an honoring of what she is and what she represents.

This statue doesn’t move. Her eyes don’t shift to follow my movements. She is alive nonetheless, imbued with a love deep and rare, a love that springs from her most famed attribute, compassion.

My father gave this Goddess to my mother sometime in the mid seventies. I imagine he was making an effort to support her blooming love of Yoga and meditation. The statue moved out when my mother and I did, after the divorce, and took up residence in the corner of the small apartment. When my mum moved to a different building, Kuan Yin settled into another corner without complaint. This is where my daughter, Bink, first met her.

Bink, my mother’s first granddaughter, was delayed in nearly every aspect of development. She never crawled, and didn’t manage to pull herself up to standing until she was over two years old. During each visit to Grandma’s place, the turquoise Goddess of Compassion was witness to Bink’s ongoing challenges and triumphs. At three feet high and graced with numerous curves that made excellent grab bars, Kuan was a natural assistant during the pull-up -to-stand phase. As the relationship between my mother and my daughter deepened, so did the one between child and Goddess.

Part of the way autism presents in my daughter is her unrelenting adherence to self-made rules and rituals. Each time Bink visited Grandma’s place, she lurched or toddled or otherwise found her way to Kuan Yin in the corner. Bink developed a real attachment to Kuan Yin. She loved to touch the smooth blue-green skin and garments. Perhaps the coolness felt good to her frazzled nervous system. My mum photographed these encounters several times, inadvertently documenting Bink’s physical growth. Though I can’t find any of those old photos now, the memory of them is clear in my mind.

I loved it when my daughter spent time with her grandmother. It gave me a much needed break from a child who didn’t sleep through the night and often wore me out with her intense and unusual needs for…well, almost everything, except perhaps socialization. My mum grew to understand Bink in a way that few others did. She understood the bizarre food preferences, the need for space and the simultaneous obsessive-compulsive need to touch people’s noses. She celebrated my daughter’s triumphs and her quirks almost as much as I did ( and do). Kuan Yin was there to witness much of this.

During one of Bink’s Grandma visits, She grabbed Kuan Yin overzealously and the turquoise wonder toppled to the floor and broke into a multitude of pieces. The statuesque Goddess had the grace to land in a way that caused no injury to my daughter, but there was some devastation nonetheless. What would visits to Grandma be like without the reassuring presence of the dear clay lady in the corner? Luckily, we didn’t have to suffer long enough to find out!

Enter my brother S. He loved model cars and planes when he was a kid, and he still excelled in his ability to visualize solutions to problems and then manifest them. S glued back every little piece of Kuan Yin, and though she bears scars that tell this tale, she stood once again tall and strong in Grandma’s corner.

When my mum had to vacate her apartment to live in an assisted living facility, Kuan Yin came home with me. At twenty five years old, Bink no longer shows an attachment to her. That doesn’t diminish her power one bit in my eyes. The one who symbolizes my favorite attribute will always have a place in my corner, wherever that may be. She is a testament to a deep love that springs from a compassionate heart, the bond between my mother and my daughter.

–Melinda Coppola

 

Mothering Outside the Lines

The Bus Stop Moms

From my morning window
I would watch
as they huddled casually,
tossed light conversation
back and forth,

an occasional
eye towards their kids
who played and laughed
together, finding sticks,
tracing shapes and letters
in the dirt.

After the big
yellow bus swallowed
their chattering children,
the moms would often stay
and talk a bit
in the easy way
women do
when they have things-in-common,

like an intact marriage,
and Pilates class,
and typically developing children.

I’d watch them wave to each other
as they’d part,
good-bye, see you later,
the bus stop moms turning
each towards her own
well manicured lawn,
highlighted hair shining in the sun.

I’d guess at market lists,
soccer schedules,
Girl Scouts tomorrow,
Johnny needs new sneakers,
such busy mommy thoughts
dancing in their heads.

From behind a fraying lace curtain
I’d imagine being one of them.
How carefree they must feel,
sending their kids off
without concern
for their obsessions,
compulsions, anxiety,
lack of toileting skills,
inability to communicate.

Without gnawing worry
that today might be the day
she bites the teacher again,
(who tells her to wait for the bathroom),

or rips at her clothes at recess,
(because it’s just too loud),
or has a meltdown during snack time,
(because the juice was the wrong color,
and nobody noticed signs
of the impending storm).

Almost two decades later,
the bus stop moms
are all grown up,
and so am I.

We still live in parallel universes,
they in their emptying nests, kids
off to college,
getting engaged,
traveling the world,

and I rarely compare
my apple to their oranges
these days,
having found the appetite
for what I have been served,

which is another way of saying
we can learn to love
what we’ve been given.

I’m busy slow dancing
a day, a week at a time,
having found my own
special mom circles,

and a different carefree
that doesn’t demand
grades, degrees, weddings,

having found a partner who
loves being her dad.

Different house,
the lawn still unkempt,
the curtain perpetually
in need of replacement,

these days I only peek out
to see the bunnies
so at home
in our untended landscape,
as am I,
as am I.

 

-Melinda Coppola

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Rocking the cosmic swirl

Rocking

It comforts me to know the old
couple across the street
just celebrated fifty years

in the same house. Fifty together years
with the home they perhaps chose
to be new in together,
a threesome of sorts,
their bodies joining brick
and hardened earth
settling and cracking
and pressing together,

adding more spackle
and grout
and laughter

with a child, then three more,
adding rooms
to contain the growing
and the mirth
and the tears
of those who were
fledged,
now gone.

When my soul grows weary
traversing tightropes—
such fast-paced, overloaded,
know-too-much times—
I look across the street,

to the wise and wizened pair
who are ever so busy
slowly rocking, in their old chairs,
on the porch,

and it consoles me to witness them,
soothes me to consider
the old ways of houses
and their people,
and the history of aged dwellings anywhere,
the ways these wood and stone
talismans seem to lean into
a wind or two that can elicit creaks,
groans even,

and their occupants
maybe know
they are being held up
by sagging floorboards
and crumbling plaster,
and the roof is losing shingles
fast as hairs on their heads,

yet they rock, and nod,
and smile
as if to say

where are you rushing to,
and don’t you know
all things fall apart.
We do, too,

so why not sit awhile,
give the swirling
sediment of your ancestors,
and the greening pollen
that falls from the trees
like stardust in the daytime,
a place to land.

See how the wind marries the light,
begets little particles of evidence
that you’re alive,
that others have been, too,
and ragweed and dander,
detritus of the whole cosmic swirl,

touch down on your arms,
have little dances
before they settle there.

 

–Melinda Coppola

 

 

 

Today’s Truth

We all have challenges, right? Bink has rocky periods, when her anxiety rises and OCD rears its particularly ugly head. There is no easy or quick fix for these times, though we try many things. When she hurts, I do, too, with my whole heart.  I know things will change, because they always do, but today this how things look from my window.

 

 

 

 

 

Today’s Truth

I could write all sorts of words,
poems, songs, I could
take pictures and post
on Facebook, showing
the world
(or the twenty who’d read it )
my strongest doing fine face

and maybe share
that one of me in the Florida sun,
beach behind, smiling into the iphone
all shiny teeth and Aren’t I lucky
and
See how lovely it is here.

Truth is,
this morning
my daughter awoke
navigating a battlefield
familiar and grim.

Her foes—
anxiety, obsessions,
compulsions—
filling her head
with demands and
little terrors,

and I can only
pierce my skin,
pull my heart through the hole,
weave my love into a soft armor
and toss it around her shoulders,

and from the periphery,
shoot blind bullets
into the invisibles
she wrestles with,
use words
more powerful
than theirs,
hope to gain ground
through repetition.

I can only
turn my whole self
inside out,
reach into my center
and grab steaming handfuls
of my fortitude and
my perspective

and fling them towards her,
tell her this is medicine,
this is salvation.

 

–Melinda Coppola

 

 

 

Questions, Questions, Everywhere

 

When Bink was young, I didn’t know if she’d ever be able to ask questions. She had words at age three and four, five and six, but not in a conversational way. She didn’t point at things. Figuring out what she needed or wanted involved some combination of detective work, intuition, and guessing, the way it is with new babies. Could she be hungry? Well, it had been a while since her last snack. Did she need to be changed, or was she about to need that? ( She was very late to the toilet club compared to…well, mostly everyone). Did she want that toy she seemed to be eyeing, or could it be that her eyes were fixed instead on the fluttering leaves visible from the near window?

I got better at reading her actions and reactions. Her vocabulary began to grow. Still, no questions, no gesturing. I’d carry her to the various rooms in our home, finding assorted objects and pointing them out and saying their names over and over. When she got too heavy to carry, I’d toddle around with her and do the same thing. After awhile, I began to add the beginnings of a question. I’d point at something, try to get her eyes to follow my finger, and then say,” Wh, Wh, What. What is it? It’s a ….light! Wh, wh, what. What is the sound? It’s a …..doorbell! In front of the mirror it was Wh, Wh, Who. Who is it? It’s….Bink!”

Like many aspects of autism, the gaps in typical development were frustrating, and also fascinating. Bink’s inability to inquire about the world around her created an odd, passive dependency. I could never be sure what or how much she was taking in from anyone’s efforts to talk to her, or from overheard conversations, TV shows, or picture books. Weeks, months, even years later, I’d hear her repeat phrases or snippets of old conversation that told me she was absorbing more than most people thought she was. She didn’t observe others, but she did seem to be able to associate what people said with what they might do, sometimes. She and I developed an ability to communicate using pictures, gestures, and songs. I was her interpreter, filling in the gaps when kids and adults tried to communicate with her in the ways they knew. “ I think she wants….”, I’d say to them. “ Bink, Susie wants to sit close to you and play.”, I’d explain to her, while demonstrating this with my own body and a nearby toy.

I don’t remember exactly when she began to form the W’s. I know it took a long time. Years. The questions, when they came, were repetitive. Often, they still are. In fact, is not unusual for Bink to ask the same question during phases that last months, over many years, and multiple times a day. But I’m getting ahead of myself, as I often do.

Bink’s delivery gradually expanded from vocalizations directed at nobody in particular, to words sometimes uttered in the general direction of a person. Years later, there were more words, scrawled on a napkin that she’d leave on the table where, perhaps, someone might find it and be able to decipher it. Later still, there were typed lists. Many of her questions, now, involve why someone said a certain thing to her (or did something in her presence). It can be a challenge to explain why a certain teacher said a particular sentence on that second June Tuesday in 2003, or why her now deceased grandfather played a certain game with her when she was two years old that she didn’t like. The notion that he may not have realized she didn’t like the game is foreign to her. Doesn’t everyone just know what is happening in her head? Do others have different thoughts, feelings and preferences than she does? These concepts can be pretty advanced to those on the autism spectrum.

These days, Bink is a veritable fountain of questions, mostly about her past, and most of them are directed at me. “ I don’t know”, or “ I wasn’t there” is not a satisfying answer for her. I know she uses the answers as a learning tool, and so “ I wasn’t there, but I can guess” is my default intro to an answer that I hope will help her understand.

In a recent post, I shared some of the rituals and routines that punctuate life with Bink. Her Friday questions list is one of them. She types up a list of ten questions, titles it according to what is in her head, and I answer them as I think the named person or thing would answer them. It sounds convoluted when I try to explain, but this is part of the rhythm of our lives at home now.

If something is troubling her about why a certain instrument sound happened on a particular song on a specific CD, there may well be a list of ten questions for me to answer the way I think the song on the CD would answer them. Her Occupational Therapist, the one she loved and knew in 1997, used Jello animals during sessions. Bink has probably asked me about this two hundred times. Why did that OT use those animals and no other OT did? No iteration of my answers has satisfied her curiosity. There have been many lists of questions for Tina, the beloved OT who died long ago, typed out for me to answer them the way I think she would answer them. Maybe someday Bink will be able to accept an explanation that you or I would find eminently reasonable, and then she’ll close this particular file in her head. Until then, the questions will continue, asked and answered slightly differently.

I admit that the questions list is often a challenge for me, and something to fit in between all the other things that demand my attention. Yet, I remember myself as Bink’s  young mother,  twenty years ago. I imagine she and I, meeting today for tea. “ What do you mean, too many questions?,” she might sputter, eyes wide for emphasis. ” Do you know what I would give to have my little Bink ask a single one of them?”

I’d have to be humbled, and tell her she’s right. I used to just hope and pray for that which sometimes overwhelms me now. I know Bink’s questions are a banner of progress, and a reminder that she is always learning and growing.

Indeed, if my young mother-self were sitting with me now, I’d reach across the table and take her smooth hands in my older, weathered ones.  “ Keep the faith,” I’d whisper. “ She’s going to surprise you and delight you and make you very, very proud.”

–Melinda Coppola

 

 

 

MORE AUTISM AWARENESS: RITUALS

AUTISM AWARENESS MONTH: DAY 18

Routines and rituals. Don’t we all have them? Under the best of circumstances, they can add order, meaning and beauty to our lives. For many people with autism, they go beyond that, offering comfort, safety, structure, and learning opportunities. Life with Bink is rich with these practices and observances, ranging from daily to weekly to monthly. Many of her practices are entirely her own, needing no interaction to complete. Some involve me and Super Guy. I enjoy some, tolerate others, but over time I’ve grown to appreciate their place in our offbeat life. 

WEEKDAYS

There is the morning wake up song, delivered at 7am sharp. Each day’s song is different, and though they are short little things, I make ‘em up on the spot. Recently, I heard her singing in the next room. It took me a few minutes to realize that she was singing the morning tunes I’d created through the years (and on the fly)! Insert shocked-face emoji here. They were probably in order, too—something she’d remember but I would not.

EVERY MORNING

First, there is the dream journal, a wide ruled notebook set aside for just this purpose. Bink’s scrawled entries might be the thought that just entered her head, or perhaps they are indeed fragments of dreams. That’s a mystery, as it probably ought to be. She scribbles, and I read it aloud. Super Guy is an acceptable stand-in if I’m not available.

A short time later (but within fifteen minutes of her rising), there is a question or comment she texts me. (Bink is actually better with this than she is with face-to-face conversation.) She likes my response to be delivered via brief iPhone video. Sometimes, she asks a question about something current, like why we are not going on a vacation. More often, it is about something from her deep past. Example: “Why when I moved towards Miss S_______, Miss L_______ said sit down in a clementine cheese boy voice?” That might’ve happened ten or twelve years ago, folks, and I wasn’t with her when it occurred. It certainly does keep my creativity sharp coming up with answers to these!

DURING EACH DAY

There are the four household chores she’ll complete with wildly varying degrees of attention and accuracy. She marks each off with a check on her chore chart, a hand drawn thing we devised to help her learn the value of contributing to the household and earning money. There’s a choice of ten chores. Like any of us, she prefers some to others. The vacuum chore is perhaps the most challenging. Though she doesn’t have to do a lot of it to earn a check, there are many steps to the process. There is lugging the heavy vac from the broom closet, delivering it to the area that needs vacuuming, plugging it in, turning it on, and bringing the sweeper to an upright position. Then there is the requisite focus involved. She needs to first remember the purpose of vacuuming, and then to notice whether the random bits of guinea pig litter are actually gone after she moves the machine back and forth over them. Vacuuming is not a favorite task.

Other chore choices are more to her liking, including making her bed (an imprecise effort to turn the clumps of covers into a smooth layer, covering as much of the bed as possible), getting the mail from the mailbox, and helping to shop for food. Emptying the dishwasher used to be something she seemed to like, though that has been changing. Our not-very-old dishwasher has mysteriously failed to clean the food off the dishes about every third or fourth cycle. She hasn’t seemed to notice if there is food caked on the plates and the utensils, and though we oversee what she does, a few food encrusted utensils and a plate or two made it into our cabinets. Now, that chore has the added responsibility of looking to make sure the dishes are actually clean, which means we need to define clean vs. dirty and reinforce this every time. That’s an interesting thing about autism; there can be an extreme scatter of skills and understanding. Bink can often spell a word backwards, but shampooing her hair is an elusive task. She can remember the day, week and month someone said something to her that upset her, but she needs to have a rule to enforce attention to the actual cleanliness of the clean dishes.

Back to the chores list: she is such a rule-bound sort, and this means she is pretty obsessive about completing the chore chart. If daylight is waning and she hasn’t earned those four checks, she’ll tell us, with a certain urgency in her voice, that there needs to be another chore. Since she requires assistance with some tasks and oversight with all of them, on a busy day it can sometimes feel like a chore for all of us to get those checks recorded on her chart!

EACH EVENING

There is the daily recap, again in her scrawl, in a notebook designated for this purpose. The things she writes are almost always limited to what she ate during the day, and one memorable activity or outing. If someone has said something to her that she didn’t like, or in a tone she felt was harsh , that will make it’s way into the narrative as well. She wants me (or Super Guy) to read this aloud to her, but with no questions, please.

Next, after teeth are brushed and she is ready to get into bed, she wants an oral recap of what she did that day. She also wants to hear about what will happen the next day. This must include a reassurance that she’ll have a treat. ( Think tasty little snack, preferably sweet). There will be somewhere between five and fifteen nose binks and hair feels during this little ritual, depending on her anxiety level. This whole process has proved difficult when a caregiver was with her at bedtime, because she couldn’t know what had happened that day or what the next day would hold, so Bink accepts this good night ritual only from me. When I am not available, she just goes straight to bed.

WEEKLY

Each Friday afternoon, Bink presents me with a list of ten questions that she wants me to answer. Here’s the catch: she wants them answered as if I was a different person (or thing!). On the list she specifies who or what I should channel when I answer.

This can be as straightforward as Questions for Ms. K________, answered by Mom the way she thinks Ms. K________ would answer them. It can be as obtuse as Questions for I Had a Little Overcoat sung by Raul Malo, answered by Mom the way she thinks I Had a Little Overcoat sung by Raul Malo would answer them. Yep, that’s a song, folks, and a specific version at that. And so I do my best to answer each question as I think that former teacher might answer them, or a particular version of a particular song might answer them, and I leave the completed questions and answers, typed up neatly, on the table the following Friday, so they’ll be there when she returns home from her day program. If she isn’t attending her program that Friday, she wants them to be on the table when she wakes up.

I have many, many lists of these answered questions in a file on my computer. Sometimes, there are multiple volumes of questions for the same person or thing. Forty two Volumes of questions for Miss E_______, for example, or twenty eight volumes of Questions for Old P_______________ Road basement.

Why do I do this? I’ve discovered, over the years, that she learns a great deal from these questions and answers. They help her begin to understand things from a different perspective, which is no small thing for someone with autism. Miss K_________, Miss E_______, and any number of others have perplexed her with their words and actions. They are no longer around for her to speak with, or if they are, they typically have neither the time nor the patience to answer these questions, especially when they are repetitive.

She doesn’t understand some of the things that happened in that old basement in that former house. Why were there toys stored down there? Why didn’t she play there more often? These things stay with her and can cause her a great deal of anxiety and discomfort. She wasn’t able to articulate most of her fears and curiosities when she was younger. Now she can express some of them, and her weekly inquiries are a tool that allows her to consider and absorb more about the world around her. Over time and after many, many repetitive questions and their answers, she is beginning to grasp concepts that you and I take utterly for granted. People are all different, for example. Sometimes, they get angry, or impatient, or sad. Songs can come in many versions and be sung by many different artists. Basements are places people store things.

Saturday night, there is the new chore chart we’ll put up on the refrigerator door, which is also when she receives her pay for completing the previous week’s duties.

There is the Sunday selection of a recipe that she will make with me or Super Guy. This is usually a stew or soup that she will take to her day program during the week for lunches. There is the grocery shopping to buy ingredients for it, and then the actual cooking.

MONTHLY

On the last day of each month, her whiteboard calendar gets wiped clean, so it can be recreated for the coming month. Here, we list all the things we can know about in advance. Her activities, days off, and appointments are written out in erasable colored markers. This is an important thing for Bink, who is calmed by knowing what she can look forward to. It’s also an opportunity to review coping strategies, for those scary things like medical and dental appointments.

On the first of each month, there is the CD that Bink will make with Super Guy. This consists of ten songs that she will have preselected, and he will burn them onto a blank CD from iTunes. She’ll make artwork for the cover, and give it a creative name like Bumble of the Genevieve or Yellow Sunseed Girl. In the last few years, she’s favored titling these CDs with a female name and a fruit. Apple Cara, for example, or Cherry Dianne. We have dozens and dozens of these gems. The girl loves her music, and she will be able to sing a CD from memory, in order. When she is swinging in the backyard, she’ll generally be out there just as long as it takes for her to belt out a whole CD, and not a minute more.

There are other rituals that aren’t quite as prescribed. Upon eyeing a yellow car when we are driving, she will half yell/half sing the word Duck! The color of the vehicle must be just the right shade, though—not every yellow looks like a duck. Another car ritual involves her spotting a license plate with triple or quadruple numbers on it. They must be in a row, not divided on the plate. Then she’ll proclaim what she has seen. “ Triple eights!”, or, “ Quadruple fives!”. Interestingly, she is not saying these things to engage the driver, does not particularly care whether anyone responds. She just needs to blurt out her findings, and seems quite pleased with this.

Sometimes, well-meaning people have been critical of my parenting or of the ways Super Guy and I sustain these oddish practices. Some have implied that we coddle her too much, or that we oughtn’t acquiesce to routines that may seem childish.

There is a saying that goes something like this: When you’ve met one person with autism, you’ve met one person with autism. There is no one-size-fits-all description of a person on the spectrum. That said, all my experiences and understanding point to something universal: the world is a really confusing, challenging place for those who are wired differently. Things that you and I just naturally absorbed along the way and take quite for granted can seem foreign and nonsensical for Bink and others like her. She learns differently, in her own time, and repetition is key.

The rules that go with rituals and routines form a safe space for Bink. Within the comfort of the boundaries they provide, and with gentle and patient responses to her different ways of questioning, she is able to understand more about this confusing world.

Of course, Super Guy and I won’t be here forever to help her through things. We are here now, though, and we have a weighty responsibility to do everything we can to prepare her for eventual life without us. Our rituals and routines, rather than holding her back, have been an important part of her successes. They can change over time, as she changes. Eventually, the rituals may well be things she alone participates in, to calm and ground her. I find no negative in holding on to a coping skill that harms none. The more she understands about the world around her and the people who populate it, the better her chances for a meaningful, safe and comfortable life. That’s what we want for her. She deserves nothing less.

–Melinda Coppola