Sunday, July 12, 2015

Speaking Up

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.

Saturday, May 16, 2015

Musical Memories

Last night my husband and I got to go out on a date to the Seattle Symphony. It was glorious music of Purcell, Handel, Bach, and Vivaldi. Incredible healing music after the week we'd had with our son's school and just trying to make decisions and the hectic life of work this week. We were both so tired, but sat there soaking in the sumptuous sounds surrounding us. I can go on and on about the skill of this world class symphony that we have in Seattle, but there was much more that stood out to me.

Sense memory is a powerful thing and mixed with the beauty was recognition of where I was when I first heard some of that music. The Bach took me back to me slipping on my headphones after class at boarding school to lie down for a nap. I'd often listen to Handel or Bach as they would support my flagging energy into a deeper comforting sleep. Don't get me wrong, I loved the music, but I was very ill at the time and in a lot of pain with a stomach ulcer and so feeling isolated---it was comfort and renewed my energy to hear that music.

The Vivaldi was a surprise as my oldest brother David's face popped into my head as soon as the music began. I didn't associate this piece with him, but should have as I realized I first heard it when he was in college singing with his college choir. He was so happy after that performance and during it singing away in the tenor section. He talked about how fun it was to sing the "Gloria". As I was listening last night, my subconscious recognized it first as small tears leaked out of the corners of my eyes and down my face. I could see him in my minds eye being happy and it made the music so much sweeter.

One of the Vivaldi pieces, a duet by the glorious soprano and alto soloists, "Laudamus te" was sung at our wedding also. That was a wonderful reminder how music can bring you to a time of remembering those beginnings that set you up in life. I leaned into Martin as he smiled at me with the recognition of enjoying this moment together.

I'm still thinking about that music as I get  ready for bed tonight. Thinking about what we are singing at church tomorrow. What does that mean week after week? Where does it take my spirit? I look to lean into the sound and support of the music to bring me to a renewed space---a place of comfort.

"Highest renew your goodness
every morning from now on....
He will increase in us
what he has promised us out of grace,
so that we trust fast in Him,
abandon ourselves completely to Him,
rely on Him within our hearts,
so that our heart, will, and mind
depend strongly on HIm:
therefore we sing at this time:
Amen, we shall succeed, if we
believe from the depths of our hearts.
Alleluia!"

----Bach : Cantata No. 51, "Jauchzett Gott in allen Landen!" BWV 51 (Sung by a bird-like soprano beautifully---Ms. Amanda Forsythe---I applaud you!)

Wednesday, May 13, 2015

If only chickens could be assistant animals....

Yesterday was focused on one thing, the meeting at school to reinstate our son. Now, if you have a kiddo who isn’t in Special Ed, you might be thinking that we met with one or two people. Oh no, there were seven adults plus Martin and I around that table. It was tense just listening to the carefully laid out meeting and account of exactly what happened last week. It is hard to listen to missteps and new information and not feel ambushed by this information.

What was the upshot of the meeting? That we put yet another new plan in place to try to help the boy know what the plan is ahead of time so he doesn’t get surprised at how people react when things go awry. This time the plan is of a specific script that is followed, like a flow chart, for him to know what will be his only two choices each step of the way. Plus, they are talking about having a safe place for him that is a sensory soothing tent (one of the ideas floated) that he can go to escape and cool down. This plan sounds good. It really does, but it was all the talk around it that gave us pause.

I sat there listening feeling heavy about the way we all talk about my son. I was so glad we had gotten a hold of a babysitter and that he was far away from this room. I know he has always heard us and others speak right in front of him as this is the nature of therapy, school, and daily encounters with the world around us. One therapist encourages me not to put too much adult thinking upon him as she points out he had the emotional thinking of a toddler most of time, especially in moments of stress. However, it is his moments of deep insight that tells me so much more is going on in his mind then I can even guess and it drags his intense emotions along with it when he strikes at an idea often.

He talked to me about his worries the night before the meeting. Right before bed he was just lying with his face down in his bean bag chair not saying a word. I always know to check on him when he is super quiet.
ME: Are you listening to the chicks?
(He rolls over and looks at me and then into the chick’s box then flops back down into the bag.)
ME: Their soft peeps are nice, huh? Relaxing.
BOY: Yeah. Yeah…you…you…you know chicks are relaxing. No chicks at school.
ME: Yes, but you can come home and relax with them.
(He rolls away and puts his face back into the bean bag)
ME: Can I ask you something?
BOY: Yes.
ME: Are you worried about school? You seem worried.
BOY: Mama, I am worried.
ME: About school?
BOY: Do chicks go to school?
ME: No, they grow and learn by living and God made them a certain way and they just know it. They know what to do naturally. They have pretty tiny brains. Do you know why you go to school?
BOY: I don’t know.
ME: We’ve talked about it before, but okay, it is for you to learn things you might not learn on your own---to stretch your mind and hopefully make friends. And you train to have a job one day.
BOY: Does…does everyone have to have a job? What happens if you don’t work?
ME: Well, not everyone has a job, but those that don’t have to be taken care of somehow. People have jobs to have money for one thing.
BOY: What is money?
ME: You know what money is. It is the currency that we use to pay for things we need or want, but hopefully mostly needs.
BOY: Does everyone have money?
ME: No, not everyone has money, but we all have to live somehow. We pay for this house with money we earn from our jobs. We pay for the food we eat and what the chicks eat. We pay for electricity to run the computers, radio, and things like these lights. That all takes money which we get from our work that we get paid to do and we went to school to learn what to do for our jobs.
BOY: What…what if…if…if I don’t get a job?
ME: I think you can get one if you want to. I believe you are capable of doing anything you set your mind to doing including going to school and getting a job.
BOY: I don’t know.
ME: I believe you’ll have a job one day when you are ready and I know whatever it is you’ll be good at your job. Very good!
BOY: What is a job?
Then we talked about all the possibilities of career paths and what he is studying at school that possibly relates to meteorologist, video game composer, or historian plus several variants of this. Then he brought it back to the chicks.
BOY: Mama, I can’t have a rooster unless I am on a farm. What would happen, if I were a farmer?
ME: Then I know you’d have a few roosters around.
BOY: What happens 21 days after a rooster is there?
ME: Chicks!
(At this he smiled and I got him to start on his bedtime routine).

As I was putting him to bed, he asked me about the meeting and why he had to have a babysitter. I told him I didn’t want him to feel horrible about us talking about him and him hearing all of that. I told him we would talk about what happened the other day and what to do about him getting through fourth grade. I told him he could come and in the near future he probably would participate in these meetings. He decided he didn’t want to come after all.

In our meeting I was surprised that the principal said that he hadn’t seen behavior like this from a child in the fourteen years he had been at this school. Other “experts” in the room also expressed similar statements saying how our son is redefining what is needed in place for the district. This comment had a harder edge to it then I was used to hearing. It is not something you want to hear about your child.

It sent me down the path of if they talk this way about him in general, what do his peers think? How does this prejudice other teachers or aids that don’t know him well, but encounter him occasionally? At this point they were batting around the idea of not reinstating him until they had an all staff meeting essentially to talk about how to handle him. (Remember, there are only five weeks left in the school year). They were talking one, two, maybe three weeks out---then school would be essentially over.

This really made me queasy and I wanted to shout, “He’s one little boy! He’s not toxic waste that you need to have disposal procedures in place! You sound like you’re ready to throw him away!” But, I didn’t and someone sensible squashed the idea of this all staff meeting. Instead a memo will go out with who to call to help if it looks like there is situation with him and a few words about not engaging him. That still felt….ugh….just ugh….

These conversations made me feel the weight of his worries settle in from the surrounding school walls. It felt closed off not open to life and light that I would expect in this setting. I understood where his thoughts of jail come from now---to be imprisoned by what others believe about you.

It gave me a real “aha” moment about autism in general and what are the indescribable barriers that many who are autistic adults talk about such feelings. Many analyze their young adulthood and look back on what it is to grow up autistic—where everyone talks about you. Many express great anger about it and decry the feelings of “less than”. I see what that must feel like.


My tears never came though, I felt like crying, walking out of that room. My grief felt dry and hot---fueled by anger at everything I felt at what I’d heard. I could hear my son saying, “That’s not right! That’s not fair!” So many times I’ve asked him, “What’s not fair?” And he would just make sounds because he had no words to answer. I had a tiny rain drop of understanding that it all isn’t fair in that the world works in a certain way and the only way he can see to go is not even part of this path, so he thinks. He’s right; I can see how that seems unjust. 

They are going to try to put everything in place that he can get back to school in the next two weeks. The autism district experts are trying hard to get it by middle of next week as they know as time marches on him wanting to return at all also fades with time and it is at a pale sliver right now. At least they are helping us shape how to hold onto any progress he makes over the summer.

 I just hope we can get all this theory to possibly work for my boy's sake. In the meantime, he'll continue having what lessons we can get done together while holding chicks on our laps and listening to those soft quiet peeps we love so much.

Friday, May 01, 2015

The Last One for Poetry Month….NaPoWriMo #38 & #39

Well it was April 30th when I wrote the first one, but in a flash I had to write the second one and I’ll be posting now just after midnight….oh well. It was a good month! Here is a super simple poem to end on and then one of my signature rambles in the moment. The month always goes so fast chronicling it this way in poetry. I write a lot even when it isn’t April, I just don’t post them all.
We went to the UW Planetarium tonight for a presentation on the stars and planets. It was nice as it was a special night where families with autistic children could come in for free and hear this presentation and it was supported by the Autism Center there. So it was noisy and had a lot more little ones than I expected, but most of the kiddos were into it and that was fun to see.
I wish I’d had paper with me as I was thinking of doing a poem on the planets, but it had melted away by the time I arrived at home. Instead, I just wrote what I see at night here on a really great star night and then a bit of observation during our "Night Event Under the Stars".

Seeing Stars

When I look into the night sky
I see slurry of cumulus
Blurring out the moon
And all that might be hidden there
I stare intently searching the heavens
For a light or glimmer of life forms
That could be starring back at me
There is a small break
And as one that spake
A new creature tongue
There tenderly hung
Is one tiny particle of light
Shining so bright
Against the odds
Of obscuring obsoleteness
In it I pin my wish
Of another point of light
Laser beaming through the blackness
And coming up for air
That I might too
It happens like the dawn
Slowly the clouds pull
Away the magic curtain
Revealing a most grand treasure
Spread as King Midas might do
Extravagantly scattered pearls
Lining a vast ocean floor
I swim in the richness
Filling up my soul
Pouring over them
From my small spot
But feeling so gigantic
With the universe
And all the galaxies
Mapped out before me

It Happens Under His Stars

Dark eyes and tiny face
Looking up into a projection of space
You cry when they move
And when it stops, you are mesmerized
My son is leaning on me
Hearing the noise of little babies and toddler screeches
He digs into my shoulder
Squeezing my hand
Straining to hear what
Is being presented about Jupiter
I stroke his smooth, soft locks
Hoping my heartbeat will drown out
The sea of tension rising in his body
As the running little boy and sobbing babe
Peak in intensity
He hunkers down against me
Indeed finding my steady beat
This seems to defeat the cacophony
And he sits up ready to comment on Uranus
But Pluto is the one he has questions about
As the knowledgeable grad student
Called it once a planet and then not
My son gravitated towards
“What is the criterion please for a planet?”
The student didn’t really have a good answer
This made my son squirm
like there were ants literally in his pants
He wanted more facts to the matter
Hard as the planet’s surface
To chase the uncertainty of this place away
To paint a sure picture of what is in space
And tune out the other noises
That crumble his inside structure
Facts hold it all up
Like steel girders that
Are the bones of the building
Are inside his brain
But run all the way to his toes
There was another little boy
That was competing for knowing
All the facts by the naming the planets
And what they were composed of
The other little professor complained
That my boy was too quick to answer
So my boy stopped answering
And pulled my arm tighter around him
As he bit his left index finger knuckle hard
As if to say, “I can’t help it, sorry.”
I didn’t want him to be quiet
I wanted him to keep going and going
Like when it is just the three of us
And he is telling us parents
Every single thing he knows about
The universe, history, weather, or video games
It is his to dispense
With a sense of himself
He can feel himself in space this way
It helps him to know he is really here
And that his opinion and knowledge matters
No labels, no barriers, and no one else to tell him differently
He can see it all at once
The big, huge, gigantic picture
His universe on the inside
That tumbles out daily
In facts, figures, and fitful flights of fancy
It is freedom of the highest order
His vast galaxy

Wednesday, April 29, 2015

Till the Cows Come Home….NaPoWriMo #37

This is a poem that is in the unfolding drama happening in Martin’s office at the moment. Yes, it is two hours past bedtime and the boy is still struggling to finish homework. It is his own choice as it isn’t due tomorrow or required, but he started a unit and by golly he is going to finish. We’ve already alerted his teacher via an email that he’ll be in later as he’ll need to sleep a little bit more.

Homework Haze

Your eyes droop
Your shoulders stoop
As you slide into your hard thinking chair
You have a task to do, but you stare and stare
I’m wondering if anything is there
Do you have the energy to finish?
But even though you are visibly diminished
From somewhere you push on
And I’ve seen you do till dawn
Because whatever it is that is in your mind
Is the only thing you can seem to find
To focus on and you will not let it go
Rubbing your face again
To find a new trace
To get to the end
You will not bend
It is the only thing that matters
Even though your brain is in tatters
You are shattered to try to think
I see you sink
Bringing you to the brink
Of nearly giving in
I think it is not a sin
But to you, it is a must
Even if it turns you to dust
It is two hours past your bedtime
Tomorrow we will not be in our prime
I hope whatever pushes you so here
Will get you where you need to be Dear,
The determined often win the race
I pray that you will always keep pace

Observations are a very good place to start…NaPoWriMo #36

I had nothing in my head tonight to write about, so I looked around my office and just started typing. It is half way a blog post and half way a poem. Grrr...now past midnight tweaking pictures even though this is my April 28th poem.

 My Son’s Present Art

Little drawings from little hands litter my office
They are time capsules that help me escape the rocket fueled present
That launches from the now into the space unknown to planet future
A pastel flower garden where the flowers all look like small suns
Was given as a first present on a Mother’s Day
My boy had always loved to give me flowers
Many hours that year we had spent planting and digging
He beamed with such pride to give me something
He had painted and knew I would love












A fiery furnace of an exciting Sunday School lesson
Is scribbled and so earnest on my cabinet door
I remember the flood of detail my boy tried to tell me
The words he could get out were about the fire and the angel
If there was no picture, I wouldn’t have understood his story
I looked at it with him and we went through it together
Finger painted hand prints from a desperate summer’s day

We were rained inside scratching for something more to do
My son didn’t want to do anything, but he let me take his hand
and put it in the paint then to the paper
He smiled, but wouldn’t do it on his own
He would hold his hand hovering there
Daring me to take it and place it just so

A computer printed, but hand drawn birthday card
That is a portrait of me with a Hershey’s kiss floating nearby
He presented it with a kiss and hug
So proud he and his father had kept this surprise a secret
They had pulled it off and then the next year I wanted a card,
But was told by my son, “no”
This helps me to know to not expect,
But to wait for what he truly wants to give

A coffee can decorated with shaky interpretations

Of butterflies and bees now houses a yellow miniature rose
We planted a sunflower in it that year you gave it to me
And that flower quickly outgrew our humble can
We planted it in the garden
Where it bloomed most of the summer that year
And now we include a few tall sunflowers every year

A tissue paper heart window that clearly
Someone else helped those little hands make
I found it shoved in his backpack and smiled
No presentation to me, nothing special
Just a memento of the season
But a heart with my son’s name had to go on my wall
As he has my heart in so many ways

The paper sack frog that hangs on the mantle

Is so faded from enduring at least three years now
I go to take it down and I can’t
There is something that leaps to my throat
When I touch that darned pop eyed faded frog
That he never played with
and I’m sure someone else cut out
as his scissor skills are shaky still
it is something about it
holding out it’s little hands
wanting to embrace everyone
that warms me to see
wondering if someday he
could leap forward
and run at life
like this little frog
there are signs
and simple maps
that bear his hand too
all pointing at what he is
and can be
this is his art
this is his heart
this is a great start





Monday, April 27, 2015

Race Cards Shuffled....NaPoWriMo #35

My son studies and loves history at a rate that is deeper than many college students. He is fascinated by assignations and wars. So, of course, Martin Luther King comes around in his studies as well as Hitler. They were on the opposite sides of the coin of racism and I often tell him that.
Today, when he was getting off the bus, he was yelling the word “racism” to someone on the bus, but when I questioned him about it, he wouldn’t say who or why. Later, he told Martin a little bit that the kids on the bus were discussing what they thought the word meant. His first question to me off the bus was, “Mama, what is racism?” I explained it several different ways to him. Still the question stuck with me as he repeated his question to me over and over (as he often does).

Making Best of Enemies
Racism didn’t begin with Martin Luther King
It is a very ancient thing
When someone looked at the shape of one’s leg
Or the color of hair or if that person ate eggs
The looker deemed it all unworthy
To not to be and called it “dirty”
What makes us look askance
at someone because they can’t dance?
We choose and say one is right and one is wrong
And we fight or struggle amongst the throng
People are people is what we say
But how is that shown today?
We are making judgements right and left
Sitting on the opportunities of others bereft
The opposite of this is grace
To judge not from race
Or creed, or purpose, or positions
Going out of our box creates imposition
To find that uncomfortable zone of friendship
Somewhere in an uncommon kinship

Sunday, April 26, 2015

NaPoWriMo #34

Summer Swim Time at Seven
Warm on the back of my neck
Inviting and deceptive
As my skin curls up, dries out, and reddens
The sweat dribbling down to the middle of my back
Half way out of the water
Laying my head against the cool blue tiles
To listen to the slap, slap, slap
Of the pocket gunk trap
In the corner of the pool
Imagining it to be a window
Opening and closing
Onto another world
I slip under the water
To cool off that neck
And sip in the muffled
Marimba-like punctuation
That is of that same comfort sound
Now on another planet
Blasting away down in the depths
Lying on the bottom
Until I must resurface again
To do it all over again