Autism in the Trenches

AUTISM IN THE TRENCHES
BY KIRI L. K. SALAZAR

There is a foe, I cannot see
Wired with hair-trigger senses.
Conflict borne in infancy
     Camouflaged in normalcy
My heart is sore, my soul fatigued
Fighting Autism in the trenches.

My Janus child walks a line between his world and mine
I cannot cross his no-man’s land, the battle never ceases.
Nor can he find his way to me
Along a treacherous path 
Where every wrong step may carve him to pieces.

Some days, the screaming never seems to end.
Severed nerves send SOSes.
Signals get crossed, get lost in transmission
It might be joy, but why take chances?

The silence is worse.
Laying traps of false expectation.
A minefield of hope and regret
With a route that daily changes.

I have waged war against tics and compulsions
Aiming for inclusion.
Making I.E.Ps into I.E.D.s
Is not an error in transcription
But a battle plan with no excuses.

I am tired of this war.
I am raw.  I am defeated.
I have forgotten, 
Who am I really fighting for?
If the one I love is the one who is bleeding?
I cannot fight it any more.

In the Land of Normal, Autism is the enemy.
There are no victors and no survivors.
Unless I surrender completely to the pain of what is
and make peace with what will never be.

Instead of making war on his differences,
I will raise the white flag
And embrace those moments of calm.
For, if all I know is war, how can I ever come home?

__________________________________________________________________________

The artwork entitled Autism in the Trenches which is based on the above poem was installed for public consumption at ArtPrize 2021. It has now come home and awaits installation on the only wall big enough to support it.

Search for Lot 90-70454

For more details go to this link: https://www.artprize.org/70454

30 thoughts on “Autism in the Trenches

    1. Aww. Thank you. It’s not often I get shared. That is quite an honor. Seriously, I’m tearing up here. (Warning, menopause has turned into a giant sopping mess of emotions. But at least these are happy tears!)

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    1. My son is seventeen. I keep having to remind myself he is becoming an adult, even if he still likes crayons and giggling. He also needs independence…and BOY, is it hard to give him that! We are a work in progress. I hope your son has found his happy place in the world. That is all I really want for my son!

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    1. I’m glad the love shows through. It sometimes feels that I am more frustration and yelling than calm, supportive parent. (That might be on account of the peanut butter on the furniture, but still, it’s good to aim high in one’s expectations.) Thank you for reading this. I appreciate the heck out of people who do!

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      1. That’s a good point. It helps to remember that just showing up is the first step in any challenge. Then, there’s the ‘doing better’ part. I’m always working on that!

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  1. Wonderful! I’m glad the art project is finished (and looks amazing)! The poem is so emotionally raw and also accessible – a look into parenting in difficult situations. The last stanza is powerful, so very powerful! (may I share this with my SIL who is fighting trench warfare for her son?)

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    1. Share. Print off and hand out to the masses. It’s all good.

      I hope your nephew is finding his own way to meet her in the middle. You know the kids are trying their best and it’s a thousand times harder for them. I have to remind myself of that when the shinola hits the fan at home. Invite her here. We can kibbitz together on our various woes!

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    1. Thank you. It is hard to judge my own work. I know I like it. But will anyone else? Will others read the doubt and insecurity hidden behind every line? Guess at how many tries it took to get it even marginally close to what I wanted? I now look at art and writing with those thoughts in mind. Did they think what they did was finished when they put it out there? Or does every artist let go before they’re ready and hope the work can stand on its own?

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    1. Not to pry, but does that mean you or your family has been diagnosed with Alzheimers? Because, as hard as Autism is sometimes, I have to be grateful for the routine and knowing mostly how my days will go. With Alzheimers, I think there are good days and bad days…but eventually…there are more of the latter than the former. (My grandmother had Parkinson’s and the medications to treat it eventually led to a similar condition of mental deterioration.) That is very sad news. I sincerely hope that medication can alleviate the effects for as long as possible and that your family can circle together to be strong for each other. Isn’t that what we all want in our time of need?

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  2. Something any parent who has a child with level 3 autism can relate to. Sore hearts, soul fatigue, and days filled with your kiddo screaming (or self-harming) that turn into a string of emotional SOS. I have learned the only thing I can do, after I have done everything I can for him, is focus on who I want to be in all of this. Because I can only feel truly centered if I can love me and find me in the midst. And once you have a kiddo with those kinds of challenges, there’s no guarantee anyone is going to look past their challenges to give you that kind of love…so we learn to be the light in our own world. It is not an easy journey. Thank you for sharing 💜

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    1. I love your response: “…we learn to be the light in our own world.” Much of the outside world only sees our light when it’s Autism Awareness Day and we are supposed to “Light it up Blue.” We live under the blue light special daily. Reminders that we need to see the positive in the lives we lead are necessary–even if sometimes we are too overwhelmed to do much–it helps when others say “I see you. I feel your pain.”

      Sidebar: The fact that Autism Awareness is April 2–one day after April Fool’s Day–has always struck me as funny and weirdly appropriate.

      I hope your journey brings you around here again sometimes–whenever you can stop by and share your discoveries and blessings, you will be welcome.

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      1. Thank you 💜 I had to smile at your Blue light special comparison. The second job I ever worked was for Kmart, and as a checkout supervisor I often had to make the Blue light special announcements when I was covering the refund desk for a staff member’s lunch. Usually those sale items weren’t the hottest items in the store that everyone wanted, but only the items we could get rid of if they were marked on a flash sale discount. It is true that the individuals in the autism and developmentally disabled community usually aren’t who society would want to pay a full price for, but we certainly will pay more than a full price for ignoring the needs and pretending that they will go away. I think that is what funding agencies often do when they try to play the game of denying benefits to see if they can get family members advocating for their loved ones to give up or to go away… Neither end of it is an easy journey. The sensory differences are son has, the first few years of his life had to have been just an absolute living hell. We are all just doing the best we can. I would be happy to return and visit sometimes 😊 I am not always the best, because my schedule is usually pretty intense, but I will try! Wishing you everything wonderful in your week 💜

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      2. Best of luck in your journey through Autism Land. It is not for the faint of heart, but the full of heart! I wish you nothing but good outcomes, supportive teaching staff, and opportunities to connect with your child that are meaningful, memorable, and do not involve any trips to the Emergency Room!

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      3. Thank you! I am wishing you the very best on your journey also! Interestingly enough, I never doubt that Tony loves me. The way he connects with people is different (he’s non-verbal and uses AAC, and doesn’t see the point in communicating about anything other than what he wants), but I find that his eyes are very expressive and I can often get a good sense from him about what he is feeling. I love the way you expressed that this journey is for the “full of heart.” That is so true! And I do everything I can to avoid the ER. The last time we needed a trip there, he was 4 and it took five of us to hold him down so that they could get a compression bandage on his cut (me and the four strongest people they could find). He’s so much bigger now, I think they’d just have to sedate him, so…I’m fully on board with avoiding the ER at all costs!!! Take good care of yourself! 🙂

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