Saturday, October 11, 2014

Autistic Voyages in Sea-Worthy Vessels

Autism is confusing to children and parents. The first thing doctors tell you is the worst case scenario and so you work hard to improve things for your child and adjust what life looks like for your family. You keep working. You put your heart and soul into changing the future into a better scenario and some days you believe it will be the best scenario. The child knows none of this, but puts one foot in front of the other plodding along with their head down seeing the steps----matching up the footprints to the feet and backtracking along the path to pick some flowers too.
The more you work at it everyone weighs in with opinions and stories, so much so it is hard to keep focused on the work or what the goal of said work is and the child is still your child and they want to be your child no matter what tomorrow is or is not. Someone reminds you to be in the moment together.
So you sit with him or her and sometimes that feels like work. Until that melts away and you are blown away by this person staring back at you or not, but they are there wanting the same love that you want to come back at you. It may only be a fleeting second or a slight flitter of a love wave coming from the child, but it hits the parent with a force and both of you know it.
As a parent, you live there forever, now clinging to the past not wanting the wave to roll past, but to ride it all the way in----frozen at the crest where you can see for miles, days----a clear future----a new plan, place----a promised land. The child is there and where are you parent?
The child is underneath the water, perhaps exploring other fish and creatures that are much more interesting than the wave. Or they might be looking at you wondering how you got up there on top of the wave and how can they get there too? Or they might be wondering why haven't you, the parent, haven’t ridden in into shore already? Or if you take in that instant, you might see for that millisecond, you are there riding together. You want to be there longer, but you'll cherish the millisecond and ride on in and wait on shore for your child to come in too.
What if they don't come to shore? You worry. You pace. You decide to gear up and go find them. So you dive into the work again and again and again. You see the amazing fish under the water and whole other world that your child is exploring and you are fascinated. You study it with them. You learn so much. You are under so long that you both seem to be part of Atlantis or growing your own gills---it feels like the world has changed to this new exploration. You don't realize you aren't so much a part of it until you are both interrupted by a new diver or a submarine passing you by and you remember where you are and now the land up above this undersea world seems farther away than ever. How do we get back? Should we go back?
If surfing above together, it is tiring for both of you as you ride in and go right back out again and again. You are both fit and able to do this for a very long time. But you are seldom on the same board or wave again. It must seem more like a competition than a shared interest anymore.
My analogies go back to the sea often. I don't know why. I have never surfed, but admire those that do. I don't scuba dive either, but have wanted to learn. I think it is the rolling nature of autism and the challenges, joys, and discoveries----as steady as the tide.
Someone said today to never give up on our autistic kiddos and their future of what they might become. As a parent, you think to yourself, "or course not". But then I saw the sweet release of a friend as she said she had to change the dream of what her daughter's future looked like today. I thought this was such a wise statement of reality.
Her sweet daughter is sixteen and has come a long way, but and that but is always there in that sentence when it comes to her daughter, and that isn't a bad thing....autism is just going to be there and she accepts that. Her mother is doing what is best for the moment. Her daughter is on the “severe” end of things for lack of a better term. She is intelligent and delightful in many ways, but silent and locked away in her own private undersea exploration.
Her mother is being in this moment with her daughter. They might be on the beach already or they might be going back out to try to catch another wave. They've spent a lot of time exploring underwater together already. I think now, they are both coming up for air.
I like to think of them both in their own lifeboat rowing hard for an unknown destination, but there are plenty of supplies to last quite a while. No one is worried that they both will get where they need to be. Perhaps they both feel lucky to be floating along in a boat with plenty of supplies. There is a map they both clutch that might turn out to lead to hidden treasure. I'm not sure either of them can read it yet, as it still looks like just a bunch of symbols, not making a whole lot of sense, but I can see them bobbing up and down puzzling over this new destination. This is what they both have discovered in the swimming, diving, exploring, and surfing phases of the last sixteen years.
They knew they were "off the cruise" long ago. Some said to the mother that they were shipwrecked, but not in the mother’s estimation, the cruise part or ship was never really there. But today, somehow these tiny vessels did appear with their names blazoned on the side of these two little boats. They climbed in to captain their own destinations.
The mother is still there bobbing beside her daughter, but the daughter’s boat isn’t tied to the mother. The girl is a young woman steering her in a new direction away from the mother. They are settling in to travel in the miles and miles of water they had just been treading in, but it is now a partner with them in getting somewhere even if it is still unknown. This sea of autism holds them up in their dinghies of destiny. As they keep rowing...and rowing....and rowing into an unknown sun and they hope they can spy land once more.

Monday, September 29, 2014

Rainy days bring poetry....

Sonic Tectonic
Cold, slanted rain pelts my window
Like a beaded curtain swinging shut on summer
It is dark.
Blocking all rays reaching towards my memory
Of a lemon filled sky in a Caribbean sea
With white Greek bleached flour sack cloud islands to be visited
The autumn trees make my merry moment in the sun a ghetto
A former shadow of itself and unsubstantial, dark
Your rivers of words about facts and fun
Have become a downpour of abandoned feelings
Over flooding the land of reason
Vacation spots, if there weren’t volcanos popping up everywhere
I hope these are harmless
Dormant and dead with no active lava
Though if one blows,
I will cheer on the rain
To cool off and harden
So we can explore this moonscape
Navigating what is here
Still alive
To thrive after some more time goes by
And the sun returns
To dry reason

Where we stand

Friday, August 01, 2014

A Sense of Order....

Remember about a month ago when I came back from a meeting and the Boy had voluntarily put away the dishes out of the dishwasher? He only did it one time much to my slightest disappointment hoping that it was one of those summer obsessions starting, but no. Well, I didn't connect that to the 3 plates missing for a month. I thought we'd broken a bunch or something.
I found them today where he had carefully put them. They were hiding in plain sight in with the dishes, but just hanging out with non-plates---artfully stacked with fancy serving bowls and tucked in sideways. I just don't open that side of the cabinet often. It didn't occur to me as he had put the other plates where they belong.
Ignore the spilled ground coffee there (not dirt). He turned the white plate with the blue rim upside down over the bowl so the flowered plate would have a match. And tucked the one small all white plate in by the black serving platter.
I noticed these were all the "odd" ones out that are single strange plates that have somehow come to live with us and are "one of a kind". So, he logically put them with the "one of a kind" serving bowls that I don't have any that match each other.
I thought about it and how it is a step in the right direction of having a sense of order that makes sense to him. I think this was the clearest message he's given us about how he would like things ordered. We don't have order in this house and he  has told me of late he doesn't like that. I do understand. I try to work on it as I'm sure my sense of "order" doesn't make sense to anyone but me.
I guess that is part of what autism is too. An order and sensibility that is not only one's own, but makes sense to the individual. It puts all things in order for them.

My stack of blue plates without those plates. I always nest them by size, but with those odd plates stuck into the stack usually.

I'm sure there was a reason each plate had it's own home sideways stuck in, upside down on top of the bowls, and sitting alone in one part of the cabinet. I'm sure it made him very happy to see them there and not with the stack of blue and black plates on the other side of the cabinet. I remember how proud he was when I got home that day he put everything away---to arrange his own world---for him----for me---for all of us.
If he does unload the dishwasher again anytime soon, I'll know to look. And I'll keep searching for those missing items that really aren't lost at all.

Friday, July 25, 2014

It rains and I turn to poetry again...

This was written for our sudden cold stormy snap in July. I keep saying to myself, “It is still summer, I know it!” 7/25/2014

Dropping twenty degrees
Puts me on my knees
The summer wind, cool as the cucumbers
Growing in the garden now slumber
Leaves falling in July
Filling the sky
With dust of another time
Feeling I have to climb
Up and out
I want to shout
It should be warm
On the horizon a storm
Blows in mush
A winter-like hush

Surrounding us

Friday, May 16, 2014

The Lifecycle of a Boy

It seems like it takes forever for spring to get here, but when it does the wonders never cease. I feel the same way about our little boy. He was a baby a long time and then in an instant it was gone. In many ways I long for that time again, but I remember it as turbulent as pleasant. Spring can be like that.

Today I was often reminded that even though our guy is approaching his last year in single digit numbers in age, I will look back on this too wistfully at some point wanting that season to last longer. Instead, he is fascinated by the reproduction cycle at the moment: humans, birds, bugs, and plants. It reminds me that those fascinations will pull on him at some point drawing him into a whole new budding world.

Last night in the pool’s locker room my husband heard him lecture on the human life cycle how we all begin as an egg meets sperm deal. He asks such startling questions like, “Mama, why did you want your egg fertilized by Papa in 2004?” I have become accustomed to most of these questions asked in a nonchalant manner, but it does startle strangers to hear our conversations out in public. His voice is very loud and carries far---I am used to it, but others turn in mild curiosity at the boy with the loud questions about the human life cycle specifically his birth cycle. Last night my husband came out of the locker room laughing as he said our boy went all the way in his description of the life cycle as to include being dead, buried, and turning into fertilizer for the plants. I'm sure the men in the locker room were thinking what kind of kid is this?

This fascination has happened every spring with him for a couple of years. It begins with the butterflies arriving in his classroom and the cycle of the butterfly. Then he gets out his ladybug book to check on that life cycle too comparing the similarities. Then the loud spring birds remind him, along with Easter, about eggs. This brings us to eggs outside the body, his favorite to track are chicken eggs. Coming back to those inside the body that come out---bugs. And then babies, usually beginning with pigs and sheep or kittens, which eventually ends with comparing them to humans.

This year instead of rushing through all of those things a week at a time, they are all mentioned at some point throughout any given day. The main lecture on humans and then picking one side focus. This week since the butterflies in his classroom have hatched, it is all about the butterflies and ladybugs. Today, he had a day off from school, so I picked up some ladybugs with him at the garden store to be released at sunset to our garden. I took pictures as he pontificated on the life cycle of the lady bug.

“Mama there are 1500 lady bugs in that bag there. You water the plant with aphids so they have a drink of water after they are released.”

Here hold this while I cut the bag,” I say to him. He grins and holds it making his excited groaning noises. I take the bag from him and cut carefully as the little buggers are just waking from their slumber. We took them out of the refrigerator a few minutes earlier and they are sluggish still. I release the bugs. They are so beautiful as they struggle out of their sterile white mesh home and into the world. I decide to grab my camera from the house to take pictures.

“That is a good idea Mama, to take pictures of the ladybug release!” He jumps around some more and follows me into the house for a moment.

“Mama, do you think any of them will be on top of one another mating?” this thought sends him into running excited circles.

“Well, I don’t know. I would think they might be hungry just after waking up, but you never know.” We head back out to the waiting bag.

“Mama, look…l….l…look at all the ladybugs. They will eat the aphids on your roses and get fat. They will get on top of each other and then about a week later they will find a leaf and deposit eggs. Then those eggs will hatch and we will have thousands of ladybugs in our yard. Do you see any of them mating?”

I look carefully through the lens contemplating this question seriously. “Oh, look those two aren’t just crawling through the group. They have crawled off and yep, seem to be on top of one another.”

His eyes are shining now, “There will be baby ladybugs soon!”

“Maybe,” I say while I keep snapping pictures.

We watch for a while and he launches in from ladybugs to his own birth asking particulars. The light is fading quickly. I tell him we’d better depart while we can still see to step over the pile of bugs and not squish any. That thought horrifies him, but I reassure him that I promise not to harm any ladybugs in the making of these pictures.

We spent the rest of the evening picking out our favorites of the pictures (posted here). Surmising what we might find in the morning----if indeed the bag would be empty. And how many babies there might be.

He reminded me that they could fly away. "They have wings Mama, and might fly away after the aphids are gone or it gets too cold." I felt sad thinking about if our little garden couldn't provide enough for these tiny travelers. I felt sad thinking about my little guy and if he'd fly away some day or not---where would those wings take him? Just to the fence and back or beyond? Would what we have keep him content or would the call of spring make him take wing to another adventure? 

Ladybird, ladybird,
Fly away home,
Your house is on fire,
And your children all gone;
All except one
And that’s little Ann,
And she has crept under
The warming pan.

Wednesday, April 30, 2014

The last one for NaPoWriMo 2014!

Clearance Rack
My box of flowers is planted in the sun
I like the ones best that I rescue
The clearance rack a six pack for $.75
It makes me feel like I’ve won
I plant quite a mixture
This year I’ve separated out one
Amongst the throng to be the odd one out
I spy that dramatic purple pansy
Sitting there amongst the small forest of fuchsias
Or the one deep wine geranium
That sits as the parent presiding
Over all the tiny violas yellow, blue, and orange
I think, "why am I singling out this one?"
Because I feel I have become singular
Or my circumstances or my child’s
That I can no longer stand with the group
I am a flower, but such a different hue
My son is too
And that is the glue
That binds our hearts
As we grow
Planted to stand out
Even though the others are glorious too
We are not like them
We are not like each other
But we are all complimentary together
Making the whole garden
More unique and even more beautiful

Tuesday, April 29, 2014

A Tiny Twofer Tonight....

Walks like a Duck
Little costumed duck
Speak to me
You look like a super hero
The “Green Lantern” of ducks
There you sit
Reminiscent of floating in a sea of innocence
You are wearing a mask
Black pinprick eyes
Fixed on nothing and no where
You don’t look like you could rescue anyone
Rescue me please?
From talking to myself in the midnight hour
About a boy that used to read to me

Admired and a Maze-D
Judgments are part of us
A daily part of our lives
No one knowing the fuss and muss
That has crawled inside and died
We hide it all
Not knowing who to call
Who to present
The root of it
Began as a seed
A clamorous need
You say there are walls
Keeping others out

I construct mazes to keep it all in