After getting back from taking my son to his favorite place on Earth–sorry, Disney, it’s not you–I stop him at the door to the house and say,“Mommy wants a kiss for taking you to Millenium Park!”
The grudging peck on the cheek I get is accompanied by a shove to get the door open.
Not entirely feeling the love, I ask my son “Who’s the best mom in the world?”
His reply?
“Thank you!” (As if I just complimented him!!)
Having a non-verbal child means he doubles-down on the incommunicative teenager stereotype big time. Scripted speech, like ‘Please’ and ‘Thank-you’ which he practices repeatedly, usually suffice for daily living. But, every once in a while, a mom wants a little validation.
“Who’s the best mom in the world?” I repeat as I unlock the door. And then I answer my own question, “Mommy is!”
My son ignores me, brushes past and demands “Laundry” so we can wash his toy Lightning McQueen stuffies and blanket.
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.
Last night I tried to write a blog post. I was struggling to put into words how I feel about the situation in Minneapolis. The anger that permeates all the news regarding race in our country. The helplessness to change anything.
And then I went upstairs to check on my son and was reminded of WHY you never leave him alone for any reason…
This happened because I told him I was going to cut his hair the next day.
I often wonder whether my son is actually listening to me.
Now I know.
He is listening with a vengeance.
And a plan.
Below is a link on Facebook to my reaction to his styling techniques.
If you are struggling to get through depression or the continuing of Covid-19 isolation, or you could just use a laugh, it is my gift to you.
Also, you won’t be feeling so bad about your own hairstyles now, will you?
In case anyone needs to hear this, you are going to make mistakes as a parent. Some of them will be colossal. Just try not to let that be your standard operating procedure. Learn from my mistakes…
Thanksgiving was one of the roughest weeks I have had this year. Technically, it was rougher on the kid than on me. But misery rolls downhill, like Jack and Jill, leaving you with a busted head and an empty pail.
I wrote an anguished post with gut-wrenching pathos at the time it happened.
And I’ve waited until the final hearing to share it.
You may question whether it is appropriate to publish such personal information.
I certainly have.
But, I have decided that if it is at all possible to help another child by sharing what we endured…
…to reach out to other autism families.
…to other police officers.
…to other neighbors.
Then, maybe next time, nothing bad will happen.
Or something better will happen.
Or nothing will happen at all.
And wouldn’t that be beautiful!
Who did this protect and serve?
June 9, 2018
Dear Officer:
We met today under the worst circumstances. You were just doing your job; I understand that. But I feel I need to explain why I behaved the way I did and, perhaps, you can understand a little bit how the exchange seemed from my side of the handcuffs.
I came to the door, half-clothed and disoriented by lack of sleep, to learn my son had escaped. For fourteen years, I have been responsible for keeping my child safe and I have failed. Again.
But this was different from other times.
The neighbors whose home he entered were sleeping. All they heard was an intruder.
And my son no longer looks like the little boy he is.
When you first approached me, you said something about my son not responding to requests. My reply was not polite.
“Of course he can’t respond. He is a non-verbal autistic!”
You walked away as if you needed space to process that.
So, when you came back and asked me, “Do you realize what might have happened?” I answered you honestly.
“Yes. Yes, I do. It is my greatest fear.”
I was not trying to argue that the situation wasn’t serious. I was just grateful nothing worse had happened. I was focused on making my son feel better, to calm him down right now so he wouldn’t injure himself.
And you wouldn’t let me see him.
You have protocols for interactions. None of the officers would let me approach the car where my son was handcuffed. But I could hear him wailing from where I was standing in my bare feet on a damp sidewalk. You have your emergency response and I have mine.
I have a mother’s need to care for and defend her child. It doesn’t matter that my ‘child’ is five feet eight inches tall and weighs 170 pounds. He is still a child who was crying because you had his blanket, crayons, and papers. Materials now taken away in evidence.
It is probably not expected for officers to feel empathy for the wrong-doer, or his mother. To care about both sides of an equation. Perhaps you were running on adrenaline?
Did you train your firearm on my special need child? He couldn’t follow a simple command like, “Put your hands in the air and get on your knees.”
This thought haunts me.
I later learn, from the reports, that you had to tackle my child to get the cuffs on him. That he resisted and clung to a door frame as he was pulled from the house. This explained the bruises and abrasions.
Trust me, I can picture what might have happened in painful clarity.
In the past, when my son has escaped and entered homes or the nearby church, people have recognized his special needs and things have been okay. Maybe that made me blind to a growing problem.
The fact that my son was wearing a pair of Christmassy pajama bottoms and a Victory Day t-shirt from the school’s special needs programming wasn’t enough to tell you how very special he is.
The training that kicks in and locks an officer into a rigid response doesn’t allow you to recognize my shock and relief at a nightmare that wasn’t fully realized. Perhaps that looked like an insult to you? It wasn’t meant to be.
You couldn’t know that I had been sick with Salmonella. That Friday night was the first night I got any real sleep in almost a week. So, when my son woke at five a.m. Saturday, I was disoriented and put him back to bed. That when he woke me at 6:10 a.m., I was more so. That I fell back asleep is my fault. I promise you, I’m wide awake now.
I am haunted by what might have happened. I am haunted by it every time he is out of sight. I am haunted by a future I cannot see or control but can only dread. Fear never leaves me.
I am grateful that he wasn’t taken into a police station and booked. Thank you for releasing my son into my custody. Even if, like Cinderella, you sent him home with only one shoe.
I had hoped that the neighbors would drop the charges against my son for entering their home and scaring them so badly. But their fear was greater than their understanding of autism or the limits of a system that is not built for children like mine.
I do not blame them. Or I try not to. I understand how it must have looked from their side of the road; I just wish they could see the situation from mine.
Just as I hope you can understand. And that you never learn how it feels to watch your baby in handcuffs, crying and just wanting to go home.
*
Like many unpleasant life lessons, this has been a learning experience.
The wheels of justice move glacially slow.
We waited weeks for the notice that my son was being charge with first degree home invasion. Then we had to be assigned an attorney by the court. Then there were appearances and reports to submit. The sheer drag time of getting a competency review dulled the initial sharp stabs of terror to a steady, gnawing anxiety. I cried a lot this summer and into the fall.
During that time, Child Protective Services became involved. I was very grateful for the unexpected kindness of the Children’s Services Specialist who eventually cleared me of charges of neglect.
There were some positives.
The county health organization expedited Alexei’s process for getting ABA assistance as well as Community Living Supports. We are finally getting the help we’ve needed.
Also, I was able to take advantage of a program through Vivint Gives Back to get a reduced rate for a security system that will wake me up if any one of the doors or windows are opened.
And my son’s window now has security bars, because he can get into trouble even faster than an alarm system can wake me. (I stopped jerking awake at the slightest noise after these were installed.)
My son’s psychiatrist agreed to let my son take stronger meds to help keep him asleep.
And this week, my son was declared legally incompetent.
The case was dismissed with prejudice. Which is a good thing. It means he can’t be held responsible for his crimes and the verdict is final.
And I can only hope that the next time a family like mine is struggling, that it doesn’t take a crisis to get assistance. And that maybe the neighbors will offer to help make our lives easier instead of harder.
As for me, I spent these months channeling my fears and anxiety into my garden. Every time I had a panic attack or thought about losing my son, I planted flowers. I think I there are over five hundred bulbs and perennials out there now.
So, when spring arrives, perhaps it will bring a promise of better things.
The neighborhood squirrels had something juicy to gossip about this weekend. I invite you to consider how it went–I imagine it looked something like this:
Bushy-Tailed Theater Presents:
One Nut Too Many
Squirrel One: “Chitter chitter, chitter chit…(hang on, translation matrix is running slowly)…there…she’s at it again. First, she brought the plastic bags filled with yummy goodness to her giant not-a-tree house and then she moves it all back to the smaller not-a-tree house.”
Squirrel Two: “It’s about damned time. I can’t understand why she stored the food in a place so close to where she sleeps! Doesn’t she know that’s the first place other humans will look for food?”
The squirrels watch for a few minutes as the human wheels more and more bags filled with yummy goodness to the smaller not-a-tree house to feed it to the white beast living there.* They watch as she attempts a game of Tetris—trying manically to shove all of the stuff into a place too small to fit it.
Squirrel One: “What is she doing with it now?”
Squirrel Two: “Putting it in the white beast that hums in the smaller not-a-tree house…hmmm, she is terrible at packing nuts. She is doing the human equivalent of a bushy-tailed dance of frustration…what do you suppose ‘sonofabeak’ means anyway? Humans don’t have beaks!”
Squirrel One: “Who knows with humans? She’s obviously got too many nuts. She should get rid of a few.”
Squirrel Two: “Well, you can forget about getting any of the sweet snow. The human boy is eating it straight out of the carton for dinner. We’ll be lucky to get to lick the leftovers when the trash goes out six suns from now.”
Squirrel One:“He can have it. I tried the yellow kind once and it was terrible.”
Ahh…sweet, snowy goodness!
What the squirrels do not realize is that the human—me—is very shortly going to realize that the not-humming-any-more white beast in the house—the refrigerator—is not actually broken. But I won’t find this out until the next morning. Someone who shall not be named unplugged it in a genius work-around of the “Do not turn the dial in the fridge to off!” rule.
For those keeping count, the game stands:
Autistic Child – one. Clueless Parent – zero.
The squirrels do not know what to make of the human’s reversal of the previous night’s move.
Squirrel One: “Chitter, chitter…screw it…Hey, Frank get over here. She’s back.”
Squirrel Two: “What? I was watching the boy human create a nest. He is really marvelous with his use of scissors on various media. I wish I had opposable thumbs.”
Squirrel One: “Never mind that, I’ve seen that episode before. It ends with the mother human yelling at the boy human, making him clean it up…and then the boy dumps it all out again when her back is turned. No, you want to watch and see what she’s doing now.”
Squirrel Two: “What…hey!…didn’t she just move all that stuff yester-sundown? Why would she move it all back to where she stored it in the first place? Was the smaller not-a-tree house invaded?”
Squirrel One: “Nah. At least, not on my watch. She just wanted to repack it all, I guess. She gave the white, humming beast in the big not-a-tree house a bath. She was very tender and loving toward it. Though, she didn’t lick it or anything. She cut the monster into pieces and washed each section in the small silver lake in the food room.”
Squirrel Two: “Was it some kind of human magic? Was she trying to prevent a curse?”
Squirrel One: “No…but maybe she was trying to inflict one. I heard a lot of cursing going on.”
Squirrel Two: “Who was she trying to hex?”
Squirrel One: “The boy human, I think. She chittered at him on and off all sun-time. Though, I don’t think they speak the same language. He kept indicating he wanted something to eat and she just kept making him help bathe the giant humming beast that’s hogging all the food. She’s only encouraging him to try and kill it again later, from what I can tell.”
Squirrel Two: “Humans are weird.”
Squirrel One: “Like I said, there’s one nut too many in that place.”
__________
Asterisk Bedazzled Squirrely Footnote:
*I don’t care how labored the effort is, I find squirrel speak hilariously funny. Be grateful I limited it to household descriptions.
Depression is contagious. Fortunately, there are now squirrels for that!
*
I read an article today by a mom who describes herself saying, “When Did I Become Broken?” As she lists, point-by-point, her mental health challenges, I find myself lifting an imaginary glass saying, “Amen sister!”* After summing up the depressing qualities of life as a single mom with autism flavorings, I am thoroughly gruntled.
But, like the mom above, I too am enjoying the thrills of DBT Therapy. I decide to do a homework assignment and galump outside—grumbling the entire way, thinking “f*ck positivity” and dragging behind me a thick cloud of despair like a cloak of wet cement.
As I practice breathing–inhale, hold breath for a few seconds, breathe out–my eyes close and I felt the sun hit my face like a welcoming benediction. I muscle past the pain of echoed despair and drift toward the nearby farmer’s market.
On the way, I pass the same corner house I always do–the one with the scraggly white fence and a host of plants trying to escape through the wide, chipped painted slats. An enormous maple tree dominates the front corner and I am further distracted from my gloomy funk by the chittering of a familiar friend.
I call this “Urban Squirrel with Cracker Not Giving a Fu…uh…Fig.”
High in a crook of the tree, the squirrel gives me a concerned look–the kind that just invites you to start talking to him.
“Look at you! So brave. So bold. Not bothered by me in the least.”**
The squirrel is all nonchalance, flicking his head up and back down to me as if he has pressing things to do and I’d better cut to the chase.
I’m admiring his calm when the dog in the house intrudes on our conversation:
No doubt the dog is letting me know I am in imminent danger of doggy justice…just as soon as he figures out how to use the doorknob. I think he also told off the squirrel, but I might just be imagining the eye roll the squirrel gave me.
“You are certainly braver than me.” I tell the squirrel. “I know he’s behind glass and I’m still scared of that dog!”
The squirrel gives me the bush-tailed equivalent of “What Evs” and scampers away.
I make my way to the farmer’s market which is closing up its stalls slowly enough I am able to grab an impulse cabbage and a bag of reasonably priced Honey Crisps. Just before I leave, I snatch up a tiny pumpkin for 75 cents.
Back at the office, I place my orange gourd du season on the desk and realize, I’m feeling better–not fixed 100%–but definitely better. I have to wonder that no one has figured out a way to use squirrels as therapy animals.
Stolen from: evilsquirrelsnest.com where they did a much better job.
So, if you haven’t heard from me in a while, don’t worry. I’m working through some issues. And if anyone asks, I’ll be with the squirrels. Apparently, it’s all the rage:
Asterisk Bedazzled Footnotes:
*All beverages quaffed on this blog will be imaginary unless otherwise designated. They also will come with tiny umbrellas and fruity names like: “Divine Intoxication Infused with Chocolate Dreams.”
**No, I did not say “Squeak….squeak…chitter…squeak.” I do not speak squirrel. What kind of idiot do you take me for?
***Or words to that effect. I don’t speak dog either. But I can recognize “Fuck you and the horse you road in on!” in many languages.
_____________ You Read This Far Bonus_________________
You want to read more about squirrel potential? Great! Look no further than a nomination for president to be found at:
I highly approve the furry-tailed candidate’s promise to make therapy squirrels available to everyone! The no-parole until they graduate stance on children’s education might be a mite rigid. But, his nutty stand on gun control will at least make you smile.
My inner child typically goes wild during the holidays: perusing the many catalogues that come to the house pointing to each item (or circling) the ones I want the way I did when I was a kid. Now, instead of Easy Bake Ovens or Barbie accessories, I’m eyeballing whatever takes my fancy and trying to justify buying it.*
My butt really deserves a $5,000 massage
Yet, this time of year also brings with it the anxiety of gift buying that grows more intractable every year. Worry about buying a commensurate gift or any gift for an unexpected kindness makes me want to avoid people.** Trust me, when I say “You shouldn’t have!” I really mean it. The Big Bang Theory’s neurotically lovable character, Sheldon, said it best: “You didn’t get me a gift, you got me an obligation.”
But I understand, there is a joy in sharing and caring for the ones you love. But maybe, just maybe, we don’t have to do it with tangible, pricey exchanges—beautiful bows, notwithstanding.
This brings up today’s quandary. I have looked up from November’s hole of self-absorption to realize Christmas is barely two weeks away. I have not strung the house with any kind of decoration. I have not written any cards. I have baked no cookies. I have purchased no gifts, no boomwhackers or fandoozles. In short, I have been the Grinch who Ignored Christmas.
My son, however, has finally noticed the holiday comes around every year. He has started dragging me to the toy aisle to point out the extremely expensive plastic monstrosity which is this year’s IT toy:
Because nothing says love like $99.99 worth of plastic.
Now, I try not to be a Scrooge when it comes to my kid. But there is a history here that wars with my better nature. Maybe it is because he is autistic, but in the past my son has insisted on one toy in particular. He will drag me or run to the toy department to make me follow him. He will try to get me to buy it…or, failing that, will try to tuck it under his arm and walk out with it. It takes the skills of a ninja for me to sneak out, buy the item, wrap it and hide it where he can’t find it, and keep it secret until December 26th.
Then, when the holiday rolls around, and I wait to see his excitement as he opens his present, I am floored by the total disinterest the toy produces when it is actually removed from the many trip wires they use to entrap parents into never returning the item for fear they would have to repackage it. It’s as if, the minute it is out of the box, it loses whatever magic it possessed in the store when I refused to buy it for him.
So I sat down with my son and pulled up several much-cheaper options online which he willingly clicked on and watched the video ads that promoted them. Over, and over, and over. Afterwards, I type out my questions on the iPad and wait for his painstakingly slow replies:
Me: “Why do you want the garage toy?
Son: “It is wider.”
Me: “It is very expensive. Let’s see if we can find a cheaper toy you like.”
[interlude with several nearly identical v-tech toys.]
Me: “Will you like this toy instead?”
Son: “Yes”
Me: “Is there anything else you would like for Christmas?”
Son: “Crayons.”
Me: “Okay, anything else?”
Son: “I would like you to teach me to talk.”
It took me a few seconds to remember how to breathe, that’s how much the sentence hurt. I typed a few more sentences about how well he is doing and how much I now know about him because of the iPad…but he is done for the night. He runs off to play and I get a glass of wine and try not to cry.
It is entirely tempting to just order the damned prized toy to make up for all of the things my child doesn’t have. It is a constant measure of guilt that underscores many of the decisions I make as a parent. It is a trap of desperation: “If only I can make him happy it will make up for him being a non-verbal child with autism.” But I have been down this very expensive road before and, though it is a scenic route full of enticing detours, I stick to my pecuniary path. I order a VTech Ultimate Amazement Play Park car set that will make him happy for at least an hour at half the price.
Do we as parents say “No!” to the overpriced toys and the overpriced holidays since we know that it isn’t worth the cost? On the other hand, do we really want to face disappointing our child and the associated guilt? This is my continual quandary.
I would really like to know, where do you all come down on this issue? Do you cave and buy the exorbitant junk or do you grit your teeth bear the price of impecunious, parental perspicacity?***
Asterisk Bedazzled Footnotes:
*I am impulse consumerism personified.
**Let’s be honest, people make me want to avoid people.
“It’s day five; I don’t know if I’m going to make it out alive. If you are reading this, save yourselves…and send chocolate.”
Much like the Montagues and Capulets, there is a plague upon this house. It started on Sunday.
Day 1—Sunday – Signs of Plague Appear
Drag child to public events, watch in horror his inevitable descent into phlegmy madness. I race through the stages of grief like its an Olympic event and I’m going for the gold.
Me: “No no no no no. You can’t be sick! We just got here–trampoline adventure awaits and hockey practice starts at 3:00!”
(Bargaining)
Me: “Maybe it’s allergies. Or dust. Or you are just leaking. If you just go in and have fun, I’m sure you’ll feel better.”
Child: (Sucking inhalation of gargling nose noise.)
(Acceptance)
Me: “Well I guess you aren’t going to school tomorrow.”
Child: “Achkrkskhclag!” (Makes noise like a fork going through the food disposal.)
(Depression)
Day 2—Monday – Home From School
Child is not the least bit tired. He races from room to room, stopping periodically to cough directly into my face or into the nearest plate of food.*
Speaking of food, have I mentioned that the microwave has been broken for days now? I eat cold left-over stuffed peppers rather than try to reheat them, because battling to get the microwave to function sends child into a fit of hysteria. I am near tears myself.
In an effort to reign him in, force child to clean room. Discover bed frame has actually warped into a vague ‘U’ shape. Child manages to keep room clean for about a minute.
Purchased this year at Kidz Bedz–really, what they should be called is Cheap-Azz-Bedz.
While I am cleaning bathroom, child turns stove on, past the ignition point, filling house with gas. Discover window I had ‘fixed’ is actually still broken as now it won’t stay open.
Survive day despite child’s efforts. Find bottle of wine saved in basement for a ‘special occasion’. This day has been extra fucking special.
Day 3—War on the Home Front
I have battened the hatches and am maintaining a hostile truce with the enemy. My child is trying to drive me mad…or kill me. He keeps spreading mucous on everything he touches. Every surface is a burgeoning petri dish of bacterial possibilities.
He spends fifteen to twenty minutes running up and down the stairs like a maniac, giggling and shrieking for all he is worth. I am afraid to go downstairs to find out why he is so happy.
I suspect he is just thrilled to be out of school. His new phrase is ‘stay home’. Any communication is pretty big for a non-verbal child. So, I’m ecstatic to hear him talking, even if he sounds like a congested, thirty-year smoker.
Any time I leave him on his own, trouble ensues. At some point, he eats the small, rubber toggle mouse that came with my laptop computer and the grandfather clock is now missing its pendulum. He is like one of the scary, Weeping Angels from Dr. Who—I don’t dare take my eyes off him.
I certainly feel like weeping…
After he floods the bathroom and then sends water pouring down the stairs by overflowing the kitchen sink, I may have threatened to lock him in his room for the rest of his life.
I call for reinforcements. Cousins come—bearing Lysol disinfectant and hand sanitizer, they’re not stupid—to help me eat pizza and drown my sorrows in a game of Settlers of Cataan. I feel human for a very short while. But then, they are gone and I am alone with him once more.
Day—Infinity?—Who the F*ck knows?
It feels like eternity since I have had a break. Now the only break I can envision is a total nervous breakdown. I am randomly shrieking at child and alternately trying to make amends for my horrible behavior. He is fairly oblivious to both my good and my not-so-good efforts.**
Despite being sick, he isn’t sleeping much, as a result, I’m exhausted. Everything is getting on my very last, razor-wire thin nerve. Every time he does something—turn off the fridge, steal my keys, pour the bottle of green dish soap into a garbage can in his bedroom for the second time—my patience is becoming dangerously frayed. Even my son starts to pick up on it because when I shove him in his room with a strangled threat to hang him by his toes and beat him like a pinata, he recognizes that maybe, just maybe, mommy isn’t kidding.
That night, I drive us to the nearby store and pick up some well-earned desserts.*** My son picks out the biggest, sprinkle emblazoned cookie and coughs hard enough to etch the glass with his breath. The clerk doesn’t say a word about the diet coke I buy along with my sugary confections—I suspect the desperation in my eyes is beginning to show—either that, or she wants my child out of her space as quickly as possible.
Salted Caramel Chocolate Cupcake–Savor the Sanity.
*****
Friday dawns beautiful—regardless of weather predictions—because I can finally send him to school. He is still coughing, but no longer shooting phlegm so I am calling it ‘good enough’ and shoving him on the bus. I ignore his requests to “Stay home Friday” and walk back to eat my well-deserved cupcake.
As I go to sink my teeth into its sinful, rich, cake-y goodness…I feel a tickling at the back of my throat…like I might have to cough. I suppress the urge and gobble up my treat.
Denial tastes delicious.
Asterisk Bedazzled Footnotes:
* T-minus three days from transmission and counting.
**Putting him in his room repeatedly was for his own safety, I promise you, not just for my sanity.
***Ignore the fact that half the Halloween candy is already gone; I do.
TheDustSeason 