When Darkness Prevails and Hope Is Diminished

The waves were dead; the tides were in their grave,
The moon their mistress had expired before;
The winds were withered in the stagnant air,
And the clouds perish'd; Darkness had no need
Of aid from them. She was the universe.
--Lord Byron
The death of hope and despair,
This is the death of air.
--T.S. Eliot

Who can measure another's pain? Who would try? Frost wrote of death:

                         "No more to build on there. And they, since they
                          Were not the one dead, turned to their affairs."

Autism is not death, nor anything like it. It is not, and yet. And yet, for parents, it is the death of dreams, the death of the child they hoped for. At least that's how many parents view it. The problem is not that for a moment, a brief time, as an understanding of what autism is, what autism means, there is some measure of despair on the part of the parents. It is real, it is visceral.

The problem is when these feelings persist as they do for the parents at Age of Autism and many of those who believe with a fervor bordering on religious that vaccines, big pharma, the government are all in it together, all conspiring to destroy a generation of children. Spend a day there reading through the posts and the bitterness, the despair, the darkness, the rage spill over, seep into your soul and you leave sickened in spirit. Bad enough their posts that get the facts wrong. Worse still their posts by parents, mostly mothers, and the comments, the comments could sear your soul, set it on fire with their rage.

A father writes on the maalox nightmare that went poof that he can see why he is called a babykiller and a cocksucker by his wife, and Teresa Conrick responds:

Your wife sounds like one smart cookie.
The hate that you speak of is a word that you and others use - what really is emanating here is "passion" and an unwavering message that we will not go quietly into the night.
That's what you all "hate."
Rage and vitriol that excuses the calling of people who follow the scientific evidence such things, that holds people who disagree in such contempt, what is this if not the depths of despair?

What is it, that can have a mother write, as Stagliano did, of Nancy Snyderman on that same thread, if not despair? Who can write a moving post about her oldest and then wash away the poignancy, the sense of connectedness by then commenting:
I am sick to death of media reports and blogts and Tweets bashing me and my colleagues as "anti-vaxxers" and dangerous and nasty. What a load of crap = mind you none of them will comment with any humanity on a post like this. Because they are not PAID to, or their own autism - yes many of them claim to be on the spectrum - blinds them to the tragedy hitting this nation.
What is this, if not despair, the complete loss of hope, everything reduced to the taste of ashes?

And what is this, by bensmyson, if not the depths of despair?
To me anyone not fighting to recover their child might as well push them off a bridge...I am sick to death of excusing those of you who have put your brain injured child in your closet saying there is nothing you can do about it, its just the way things are. Have you never wondered what happened?

By not vilifying autism as the devil that it is you are ruining the lives of others. How many children, healthy children have died from anything, car crashes, measles, choking on a balloon, tetanus, gunshot wounds, rotavirus? How many die from autism? 6 months ago a 9 year old girl with autism fell into a fountain and drown in 3 inches of water before someone noticed. Seems to me I read something the other day about John Travolta’s son. Anyone have any idea the number of those with autism that have died from complications of autism?
AoA is littered with the ashes of parents' dreams and expectations. Rage, bitterness, venom predominate and feed there. There is no light there, no hope. Their stories of recovery still filled with rage at what autism has cost them, how the government, medicine, industry stole from them.

It is a pestilence there. There is no succor, no peace, no joy to be found. No celebrations. No joyful noises. Only lamentations.

Prison and place and reverberation
Of thunder of spring over distant mountains
He who was living is now dead
We who were living are now dying
With a little patience
--T. S. Eliot

And yet, these parents and I, have we no common ground? Can I not feel their pain while rejecting their conclusions?

Did I despair? Before I cast aspersions on parents mired in darkness, no light in sight, let me look closely at those days where the realization that my children were on the spectrum. Did I despair?

I remember exhaustion with Bobby. Screaming. The need by him to be held closely, tightly, the need to nurse constantly. The same with the girls: the need to be tightly held at all times or screaming. I remember exhaustion. Fractured days, splintered nights. Years of exhaustion and the need to keep one foot in front of the other, to keep going, to keep upright.

 Potty training was a nightmare with the boy. Total control didn't come until nearly nine and then was lost again when he had his stroke. Embarassment that he would defecate not in the toilet but on the floor. Confusion at how to reach him, get him the help. Being hit, shoved, kicked, climbed over, pulled on until we learned how to help him better manage his frustration. The child he was before the stroke wore me out, wore me down. The child after, how to explain, the giddiness that he lived, he breathed, the changes, the new challenges?  Did I despair?

I dealt with depression, certainly. Sleep deprivation, absolutely. A soul that wept, that bled tears of loss. Did I despair? Did I lose hope? Did I rage?

The bright boy born before Wakefield and the suggestion of vaccines, I had no one to blame. Did I rage? Bettelheim's book was the first I read on autism. Did I rage? At Bettelheim, gone by then. At the psychologist who first pegged it, upon witnessing my bright boy climb all over me, hit, and shove and push, that it must be oppositional defiance disorder. Did I fume? Did  I stew? At the psychiatrists who followed, who threw out a diagnosis of ADHD and ritalin to treat, followed by the suggestion of bipolar. Who added in clonodine to try to get this wild child to sleep. To sleep! This child would stay awake for 30 plus hours, testing my endurance, my stamina as I stayed awake while my husband slept, since the army had no concern for who slept or not. And sleep, the thought of it, was something I held onto, to sleep! And then on to more meds, anti-depressants followed by anti-psychotics.

Did I despair? How can you hold onto your sanity, your hope, your sense of self when all that you knew is gone and your life subsumed into this child, this one child and then many years later, these three children? How can you when exhaustion is all you know and fear of the future holds you in its grasp? How can you? You can, despite the seeming insurmountability. Despair is a choice.

How can a parent who has walked the sleep deprived walk not feel, not bleed, for the despair these parents put on full display? You cannot help but have your heart break. But you must feel more for the child who lives at the center of such despair, such rage, such venom. For it is the child who suffers at the expense of the parents.

Did I despair?

My breath, my soul, my life, my child. In between those moments where I barely put one step in front of the other, my child, then my children, led the way. They are my breath, my soul, my life, and all that they are, all of them, all their issues, all their demands, all their needs, feed my soul and give me the strength to fight for them, for who they are in their totality.

They give me joy, fierce, ebullient, abiding. They are my beacons through the wilderness, my light. My life.


kathleen said...

Very hard to read and very wonderful at the same time..powerful and passionate...amazing how love-simple love for a child supercedes all...and yet, there are those who would agree, while at the same time putting THEIR wishes, THEIR desires ahead of their childrens-saying "I am doing everything that I can to fix them!" Not SEEING the child that they have, but rather the one that they don't. Somehow justifying their actions by calling it love. It is in the not seeing that they make their biggest mistakes..

AutismNewsBeat said...

The anti-vax mindset is all about how some parents want to see themselves.


NightStorm The Aspiewolf said...

It comes down to it. Anti-vaxxers do what they want. NeuroDs do what the child wants.

Bottom line.

Clay said...

Very powerfully written. I can't conceive of what you speak of here, I've never experienced such, from either direction.

Anonymous said...

This is amazing. Can't believe I missed it in December! Thanks for pointing it out to me, Kim.

You are to be admired. The people who allow their anger at autism to take over their lives should take some time away from AoA to read your post.

I felt literally moved to the core [the feeling you get in your tummy when reading/viewing/hearing a perfect work? yep, that one.] when I read this. Very powerful writing and what an intense message of HOPE for all parents.

KWombles said...

Thank you, Katie. :-)

We'll have to hope those parents who do despair find a way to move past it, through it, to the other side.

I think, though, I can understand now how they misconceive our positions on things and twist it to think our philosophical position means doing nothing to help our children succeed and thrive. I think because they are in the depths of despair they can see no other way to be, cannot understand how someone in similar circumstances can avoid despair. When we do, not because we cannot understand how easy it would be to slip there with them, but because we resolutely turn our backs on that direction, that must somehow mean we have not been there, faced the same challenges. They cannot argue against our actual positions, so must twist it so that they have something to argue against.

I think we prevail as a community, by refusing to back down, by continuing to welcome and advocate for all, regardless of their perspective, and that we hold them accountable for their actions, with empathy, with warmth, but accountable nonetheless.


Brigid said...

What an incredibly powerful and moving post and interjected with some wonderful quotes.
I came via Jens blog.

Looking for Blue Sky said...

Also over via Jen, wow that was so powerful: I was caught up in the vaccination issue when my baby boy showed early markers for autism. I got him the single vaccines, but he has aspergers anyway...But I'm not angry, that would be a dreadful way to live my life and would have a terrible effect on my kids xx

Jen said...

That quote about pushing a child off a bridge if you aren't going to bother trying to recover them..........that kind of stuff makes me mad. I never bought into the vaccine thing and I believe there is nothing 'wrong' with my child, there is everything right about him. He is fabulous, he needs some extra help to learn how to speak and he needs to learn in a more structured environment, that is all. Ooooook, I had better stop or this will turn into a post! Jen

KWombles said...

The anger and bitterness displayed by parents at places like AoA still overwhelms me; my hope is that we can provide support and community and help parents new to the autism diagnosis cope more adaptively and spare them and their children going down that road.

Anonymous said...

This is beautiful. It is sometimes hard to see past all the political divides in the autism debate. But I totally agree that we need to recognize the common ground we share with other parents — even if we think they're dead wrong on the issues that matter. I read your review of Kim Stagliano's book and was impressed there, too, with your ability to acknowledge your similarities and recognize her humanity, while still pointing out the flaws in her logic.