Poem #7 Daddy's Steady Gaze

My Daddy is on my mind. Tonight I offer up the poem I wrote in all its ineptitude, but it had “to be”. I was asked by my sisters to do the obituary at my Dad’s funeral three weeks ago. My sisters planned everything and did a great job doing so, but they told me when I arrived the day before the funeral what my part was, which was fine, but when I arrived at the church an hour before the service I had this conversation with the undertaker.

UT: So, you’re Sarah? And you’ll be doing the obituary and reading a poem?

ME: What?

UT: You are doing the obituary?

ME: Yes, I knew that part, but poem?

UT: Oh, your sisters thought you might read one of your poems or have a story or something about your father? That’s alright if you don’t, I suppose, but they seemed to think….

ME: No, I get it. I might have something….let me think for a few minutes on it?

UT: Of course, of course, let us know?

ME: Of course, I will….yes…just let me think?

And off I went to the front pew listening to my sisters practice piano and songs and I turned the obituary that my sister had written out over to start to scribble some kind of poem or memory on the back and now it was less than an hour till service. I have so many stories now, but being on that day and time, I could think of little that was specific or appropriate to tell, so I began with two lines that popped into my head.  

I was interrupted by several people wanting to hug and talk that had come in special for the funeral. I hugged and talked. I got back to the task when we all sat down and my sister Joan began prelude. I knew I had about two minutes to either produce something or say nothing, which didn’t seem right at all, so I wrote this and improvised a little better on the fly while standing up there “reading” it after I’d read the obituary. I didn’t title it until now. I wish it were better, but it did what it was supposed to do at the time and hints at the great man we all loved.

Daddy’s Steady Gaze

My father’s eyes

Looked to the skies

For inspiration and hope

To find strength to cope

With needs beyond his scope

His kind heart embraced

To those he spoke

Tying together he laced

A community forever

Compassion he invoked

Daddy will be missed

Conversations provoked

Ideas, love, history

Will forever float

Around the memory

Like he spoke

We hear his voice

In ours

Poem #6 Car Accident Chats with My Son

Car Accident Countdown

Nine, count them nine

It’s hard to believe

I couldn’t retrieve reports for all of them

But he asked and I kept thinking there was more

I hit a parked car

That is where I learned “classic” means

Expensive to repair

The dirt road roll-over

I wasn’t sure what happened

A big rock and going too fast

Was part of the story?

The lady that left a perfect impression of her front end

In my side passenger door

I remember that shock well

And another lady that clipped my bumper

As I finished that left hand turn

And she spun me round into on-coming traffic

Or the polite teen that rear ended me

But boy, was I mad because it was

Their entire fault

But, I’ve had faults too

The rain pelting down

More than once

I misjudged that turn

As the watery ghost of a car

Near me seemed farther away

And the time the air bag hit

With such force

I don’t remember if I walked away

Or the ambulance came?

Later my dear one

Went to clean out the van

What was left in it?

And he came home to hug me so close,

I could barely breathe

As he sobbed in my arms

To see how close death could have been

Those angels that pushed it inches

The other direction are on double duty

In times like that

My boy asked and I answered

They all seem incredibly long ago

But now that I’m remembering

I think there was a tenth

That is a nice round number

And a good place to stop

Poems #4 Here Comes the Sun and #5 One More Day

From Seattle’s amazing blazing sunshine and grand Spring weather this week to my not so sunny mood considering the recent death of my father. Yep, not the greatest poetry I’ve ever written, but honest in its desires.

Here Comes the Sun

Come and dare the day away

To see what we can see

Finding jewels in strawberries

And be what want to be

Sing the words we long to hear

Beyond the crystal sea

Streets crystalline that shimmer

A love-a-thon for free

To soak in the kind

And have in mind

All manner of mystery

Becomes apparent

As we inherent

Super powers beyond degree

Climb a tree

Plant a seed

Find someone to hug

Live a life beyond the screen

Frolic in the sun!

One More Day

One day is as good as another

Or so I always thought

Until the one I longed to see

Had been removed from his spot

He was always there

It seemed unfair

To now think of him as not

I wanted more

What had gone before

Seemed much too thin a plot

Now this day is marked gray

I cannot say

why this day appeals to me?

I feel unmoored, adrift, bereft

A lock without the key

I hear the years

Will scrub the tears

Well washed this day made clean

I want it now

Across my bow

One more day to dream

Poem #3 Cracked Open

Worldwide Autism Awareness Day

My poem tonight isn’t about autism directly, but something that happened with our boy today and the way he communicates or communicated this one moment in time that started small and became huge.
The pictures are from a few months ago where our boy who struggles with motor skills sometimes and motor planning as part of his struggles climbed to the top of one of those really high net climbing ropes at the Seattle Center. 
We were proud as punch as there were tons of kids and he didn't give up as he sometimes would in the past with so many on there. He tried it twice and didn't get up by himself the first time as a parent that was up there helped him, but he did it a second time and was so proud to push through and do it himself. That is what getting to each goal physically and emotionally is like for him it seems. He inspires me daily.

Cracked Open

The door ajar

Grabs thoughts

About stranger danger

The world spins

Full of sins

A frightened boy

Crushes joy

Pushed away

I stay

To bolster boy

Holding hands

We understand

God’s plan

A peace covers

Tears for fears

Are dry now

NaMoWriPo Time again to write some poems! #1 & #2

April 1^st is no joke to me as it is Autism Awareness or as I like to say Autism Advocacy Month and National Poetry Month with it goes the National Month of Writing Poetry Challenge. Now, some people don’t take either of those subjects seriously, but I take them both seriously as they are both such a huge part of my life.

For this challenge, I will be posting a quick poem I scribble in 10 minutes each day. It is always an adventure as I did this for the past two years and am looking forward to this third, however, be warned that life events have been rough of late and the poetry may reflect that as it is always part of my grieving process. I’ve also been sick this week, so I offer up these two opening poems as through a very foggy brain, but here they are none the less.

The Brothers and Sisters “K”

“A” begins a stream of letters

Falling in line like eager soldiers

Marching in the same pattern

From beginning to end

Tumbling faster grouped

Together like tiny families

We remember “A,B,C”

“Q, R, S” and “T, U, V”

The larger groups are of those

Mysterious tribes with twins

And triplets gathered round the fire

“L,M,N,O,P” and “U,V,W,X,Y,Z”

But what of “K” that stands alone?

There a stop in the middle

On the way to rattling off

Those that belong together

“K” is cut away between

“H,I,J” and “L,M,N,O,P”

The curious “K” is sequestered

To be the pause in the long line

The rock in the creek

where the current passes round

swift and sure goes on by

as it stays steady on

standing a part of the whole

Apart

Where to start

Is it fair

To stand apart

Unaware

Of the deep crease

And sweet release

In a life lived long and sure

Come again

To depend

On those feelings deep

That creep

Past our hearts

To find a way

To stay

And increase

The silence

Once one is gone?

What I ask

What is this thing

That bares down hard

Like sludge or lard

That clogs the brain

Like a pelting rain

Because of the constant refrain

Of “he and she are gone”?

Slipped out for a bit

Is where I sit

Grasping at that cliff

I’ve slipped down

To that one vine

I claim as mine

Wagging my limbs to climb

To the top would be kind

As underneath me

I have nothing see

But earth and wind and sky

Invest in the Broken

Perhaps "innovation" should be a stronger word in my vocabulary for this coming year. As my son destroyed another small gift I had just given him for Christmas, I thought many thoughts, but one that floated through I was chastising myself for buying him something that had the potential of being just another thing he destroyed within minutes.

Yes, he did it with no provocation except curiosity that I know he can't quite resist in such items, so why do I persist in purchasing them for him? Because I want to give him something that has potential to please him also. Maybe that moment of destruction also pleases him more than I know---more than hanging on to the thing and playing with it.

I, personally, don't get it. I do think back to when I gave a new doll given to me for Christmas a "hair cut", so I suppose that is some of the same. I remember taking a marker to one also. Beheading Barbies was always a good time, if nothing else to irritate my sister. He got a reaction from me and that alone is probably worth the price of admission. I could see my reaction was highly entertaining to him.

I made sure the item was only about $4 on sale and so my thought was if he did destroy it, I wouldn't be too broken up about it. It sure made a mess and may have stained the couch and his clothes to the point of no return, but we'll see about that too. To him it doesn't matter of the expense, who gave it to him, or if it is sentimental----there is no sentiment to him.

This summer he destroyed a garden gnome a student had given me and a garden statue that my husband had given me. I was rather upset and taken aback that he'd done that. The gnome was sentimental and that little statue I'd grown fond of being there all these years. Both were memory markers that I'd look at and think of certain times. They were in my garden and were mine. He took them and smashed them to pieces. I was angry. They were just things, but that he took them and just destroyed them for no reason was what was beyond my thinking.

The "Let It Go" theme song is playing in my head, but it is difficult to let go of wanting to hang on to times and things that represent something. So, what did this little $4 gift represent? Simply a gift from me. He hangs on to none of them that I give him or plays with much of any of them----he simply dismantles them and I put them into the trash can. I keep handing him gifts great and small and he keeps taking them apart to find what is inside.

I guess that is part of what he'll always do. He goes deep into any subject to find the furthest he can go on the inside. He wants to know how everything works. 

I think I should do what a friend of mine with his autistic son does and go to Goodwill and garage sales finding interesting electronics, toasters, clocks, etc...and hands him a few tools so he can simply "take it apart". As far as I know, this particular child has never put anything back together, but he is an expert at taking stuff apart and it makes him really, really happy. They are never short for screws, nails, or other such hardware in that family.

I do want to see him happy about the gifts I give him. Perhaps, I shouldn't care how that happiness comes. I want him to keep exploring what is on the inside. I think I haven't explored that enough when it comes to objects in my life, so often I don't understand how to repair them when they break. Maybe, he will study what he destroys and some day to find a way to put it all back together.

He is excited for his doctor's appointment tomorrow to discuss medicine with our doctor. His fascination at the moment is in the disease angle of it all not into the healing parts. I hope if he studies it in depth though, the healing will take place. If nothing else, he'd make a great surgeon, find what it is and cut it out! It is the sewing up part that will take a bit more practice.

P.S. I was going to post pictures of the broken gnome that I did take at one point when I was really mad, but I must have purged them in order to "let it go". Good for me!

Windstorm of emotions coming through....

Around Christmas friends and acquaintances always ask what my plans for the holidays are and they ask about my family. Or they ask if my mother is going to come see us, because they don’t know me and their mother is flying in and they have it on the brain. It is always a little bit of an awkward silence after I confess, “No, my Mom passed away “x” number of years ago.”

It was Christmas time, I remember the lights and decorations up as we drove through town in our tiny Missouri town after the funeral. The lights blurred in the reds, yellows, and greens like a water color as I cried my eyes out. I remember looking out the car window thinking, “Why is there so much color?” I wanted to drain it all away to match my mood.

It was surreal to think of her gone. For about 5 years after her death, I dreamed often she wasn’t gone. We weren’t close, but she was my Mom and there is something indefinable that I miss about her---her being here.

17 years ago today, Mom, you passed away and I was so glad you were out of tremendous pain, but I was also so sad to know you’d left, oh too soon. I miss you, Mommy!

Mother, December 10th

I sat down and it settled in

I scheduled work today to distract me

I was so busy until the children’s voices

rang out with today’s date

just a day to most

a birthday to some

a marriage proposal to others

a job promotion

an encouraging word

a first book published

a difficult test conquered

a love gained and lost

a mile walked or run for the first time

a dry pair of socks given to someone living in the pouring rain

a memory floating on a sea of mixed feelings

so deep like paint that is stirred after sitting

reveals its true shades

the beauty ready to be spread

part of a picture captured

created out of using

not wallowing,

thick like stucco

Delicate brush strokes

wire thin, part of the bigger picture

the date tells me this is the day

this is the day you left

you wandered off this coil

no longer to be called mother, sister, or lover

by anyone except in passing

many stories repeated at first

then the second verse

is a little less, but still conveys

your life story

and the third verse often skipped

is the heart of the song

I can’t skip it

I let it ring out

If only to myself

But sing as if everyone can hear it

And then finish on the fourth

As to the hope I find,

In knowing where you are

And where we might meet again,

On this day to myself, I sing the whole song,

this song sailing though

as wind gusts blowing

sometimes raging surprisingly powerful

to the delight of those

that speak not your name often

Except now

on this day

this date

today

we sing

Slow traffic and sunsets....

A few thoughts that were rattling around my head as I sat on traffic on the way home from Joni and Friends Camp in Southern Oregon. The whole experience makes me reflect on disability, faith, present, future, and always on God. How does all this fit together?

The poem I had in my head was a bit better than the one I wrote down finally when I returned home, but the bones of it are still there and reflecting what I was musing. A couple of the lines that I wanted did make it in there too. I am thankful for a place to reflect about the wonder of this journey with other families of faith that “get it”.

My Distant Playhouse

Rattling along the highway

Toward our home we live in and out of

Somewhere in the middle distance is a house

And in it is our stuff that keeps it all familiar and somewhat fun

In my rear view mirror, I am stunned

By a blaze of sunset burning bright

So intense it catches my breath at the sight

I can’t take my eyes off the brilliant colors drawing me in

To this day that was and what I never saw

Or could have been

Because before me is pure murky soup

The Pacific Northwest spitting and sputtering our day’s end

A silent close, hemmed in with fog

punctuated quietly with constant drizzle

Tires screech on the pavement

and I startle aware of the car in front

Breaking hard at the sudden slow down

Red angry brake lights

Grab my attention away from the day dream

As it often does

The scene of “what could have been” dancing picturesque

Until reality, slams on the breaks

As sound, sight, and sensations return

Telling me where I am and where I’m headed

Not for sex on a sunset beach

Oh no, my sights are set on this home

Somewhere in the middle distance

miles away through heavy traffic

I know there is a better home

At least, this is what I believe

I repeat it over and over again

Willing myself to tear my sight away

From wishes or wants

To what is and what will be

Keep driving and be faithful to the course

The slow-downs don’t matter as I will arrive

Beyond the traffic and all of it

I will melt into an even more perfect place

Falling out misshapen as I am

Out of that tight mold I’ve squeezed myself into

One day I won’t need maps or to pay such close attention

To details of doctors or behavior plans or diets or displaced dreams

Far above the low lying clouds I’ll be

And I’ll know face to face God loves me

See clearly His wonder, beauty

I’m held fast in His grace

By his side

I will have won the race

Others with me too

Like my little Boo

There we all will be ordinary people

Yet still very special with no needs at all

Living a thousand years in a day

In our home at play

Speaking Up

UPDATE: This is still a good essay of what I believe about writing for autism and what goes on between those writing that are autistic and those close to it i.e. parents of autistic children. In November, I am headed to NYC for the first time, to see a play written by autistics.
 I am excited to see what this brings to my life, process, and understanding of autism. In the two years since I wrote this post, and the five years since I presented the play Hunting Dinosaurs, that took me several years to write. I have dabbled at stretching the play and changing it as I said below, but I have still stalled out. I hope seeing through new eyes this play in New York will shake loose my writing and blend together all the years since to something fantastic coming out.
____________________________________________________________________

All people have feelings. Not all people are heard or valued or seen as valuable. I wish with all my heart I could change this and all persons would be valued and felt their worth. It is hard to communicate honest intentions on the internet, but in days gone by it was just as difficult as it is a human flaw to struggle to communicate clearly. To empathize through a few words is an art and a delicate balance.

In this day and age when opinions are like popcorn, it is so easy to fall into a strong voice that pulls you one way or the next not really having any experience with whatever that voice is telling you about. We munch on the delicious popcorn until we often are sick and vomit it back up all over each other and then it isn’t as good as when we ate it, is it? This is how the broad subject of autism, if I can even call it a just a subject, feels like sometimes when it is discussed en masse. It is discovered, defamed, some find it dreary or pitiful to talk about, but how few seem to know it up close and personal, but oh yes, everyone has an opinion about it more and more.

I struggle as a parent of an autistic child when reading angry blogs of autistic adults. I do read them even though there is a lot of blame, shame, and bile thrown at the feet of parents. Yes, these are the people living day to day with autism. They should have plenty of opinions, but where I shudder is when they seem to want to be the voice for the entire spectrum. It is called a spectrum for a reason. There are people that are at every stop on that broad spectrum. Still, it is those angry voices make me want to gather up all those hurt souls and comfort them. To tell the screamers that they are valued and that I do recognize their voice, struggle, and often brilliance. And some of them, I suspect are valued greatly, even though they scream about how they were parented; they are valued by those same parents that seem so very evil to them. There are evil parents out there and not all parents of autistics are saints, but to throw all of us in one bag just as autistics they say they have been thrown into one bargain bin is wrong.

We are all people. We all have rights, feelings, and voices. Some autistics use those voices very well and some, well, scream a lot about being wronged just as much as parents “complain” about their life bringing up an autistic. Autistics call parents that complain disgusting and assume that the parents just want pity and attention. This is a delicate subject that yes, some writing is for attention seekers, but some are trying to honestly figure out what to do and so they report what goes on through their own eyes trying to see through the autistic in their household’s eyes. I know because that is what I do.

What about the autistics that have no voice? None. They don’t write, they don’t mature, and they don’t have that capacity to scream about their lives, because they live day to day to day surviving. There are those that exist on the spectrum. Their voices are locked up or hidden or undiscovered by those of us that do have voices. Who speaks for them or with them?

I see tireless parents advocating for those autistics that cannot speak. Assistants, doctors, and therapists giving over their voice for the voiceless and gladly doing it-----not for praise, or honor or some prize, but to find the person inside they have come to love, honor and respect. These unsung heroes do exist----the voiceless autistic and the one who selflessly cares for them do exist. I know them. They are both such strong people that I admire. One struggling against the body and brain they are in and the other trying so hard to help that body and brain of the one they serve and fiercely love to function better. A little progress made is triumphant. I hope technology advances to the point we can hear those voices. There is a voice inside each and every one of them. I see it.

I once wrote a play about three very different kinds of voiceless autistics and the three different outcomes of them with their parents. I was praised by many who knew nothing about autism and some that knew a lot. Then there was a group of autistics that accused me after the play ran of not knowing or writing about autism at all. I was asked to write for the voiceless specifically by a loving parent and I was screamed at from afar by an autistic that had not seen the play but had it reported to him by an unreliable witness. And that group of autistics, which none of them had seen it, blogged and blogged and screamed and screamed until I was overwhelmed and shut down and stopped working on my play.

We each come from a different perspective and understanding. I am not autistic, but as a parent, I have some understanding of autism. I say some. I am not at all an expert on the subject. Some things I merely guess about from observing my son and listening to him and to others on the spectrum that I meet. But to say that parents should have no voice or opinion or even say they don’t know anything about autism is ludicrous. I wish more autistics that do write would write about what it is they face, see, feel, and need. More first-hand accounts are what we need and then we parents can stop guessing. I did challenge the screamers to write their own play and I’m still waiting for it. I’d support it in a heartbeat.

Like I said, I mostly read complaints about what they’ve perceived as wrongs and how they are not listened to. I’m listening and so are a lot of others that really want to know about what autistics think on a day to day basis. What would make this world better for autistics, right here and right now? That is what I want to know. How can parents bring their autistic children up to be strong advocators for themselves? What do we parents need to know? I don’t want to hear a litany of complaints----I’ll stop it if you will----I want to hear if autistics have solutions or suggestions even of what I can or could change or that needs to change for autistics to feel freer, fuller, and more at peace. This is what I want to know.

I really do want to know and I need so desperately to know. My son can’t tell me. He’s getting better at communicating, but not yet. He has a lot to say and I listen to all of it. I wait to hear what I can do better to help him. I hope he can tell me without feeling the need to shout me down to do it. I love him and want the very best for his life and childhood. I want him to learn his worth is priceless just as he is now and always. I am listening. I am waiting for his voice to shout good things about being autistic and to know that is has great value all over this world. I say yes to integration, not separation and yes to accommodation not intimidation or exclusion. We need to find more ways to bridge the gap as it is deep and wide in more ways than most “typicals” realize. That I do get more and more and more.

Listening to the underlying words that were being screamed at me about my play, I think I heard the issues. I hope I did and do. I have wrestled with it for two years. As I begin to rewrite my play and stretch it and knead it into another shape, one that I pray is better and has a stronger voice that advocates for those without voices. I hope it speaks for autistics to live a good life, and that the rewrite will come down so firmly on the side of hope there can be no misinterpretations. I often go back to slog through all the popcorn to find the kernels of truth that created all this fluff to begin with. What needs to be said? What is that voice? Can I try to write as honestly as I can and represent what I am not, but what I care so much about? I will try. Pray with me as I try. As it needs to be said.