Hiding from the Moon on a Very Dark Night

Crisis DuJour, Heartbreak, Parenting Heart Palpitations, Terrifying Transitions, Universal Coverage - In a Bad Way, Welcome To Autismland: Population 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…


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By Friday night, I was in hysterics. I could back up and tell you everything that leads up to the moment when I freak out and take my son to the emergency room for the third time, but honestly, it drains me to just think about it any more. It’s also embarrassing and painful to relate. But, just in case any other parent out there needs to know how badly you can get it wrong, let this post be a lesson.

For months, I’ve been trying to treat my child for what I believed was unidentified gastric pain. (I won’t say that I have Munchausen’s By Proxy…but I’m starting to understand how the condition comes about.) I’ve watched my child erupt with what appeared to be pain-filled rages–absolutely heartbreaking to watch; terrifying to experience; incapable of being predicted or prevented. These are gutting scenes of emotional slaughter that come without warning and can last for thirty to forty-five minutes. And all I have to try and help are antacids and anti-psychotics. So I use them like a tinfoil shield against a hurricane; I know they won’t stop the storm but they are all I have.

Every test the doctors run, at my histrionic insistence, comes back negative. No ulcers. No blockages. No signs of any gastric problems whatsoever. But the kid keeps devolving into spastic furies that leave me spent and him covered in bruises and bleeding from self-injurious wounds. It has been like living with the enemy in his war camp, with no cessation of hostilities, and no sleep. And then his behavior at school gets him suspended for the last three days before holiday break.

So, Friday, after speaking with the doctor’s office and getting a new appointment and a promise to run a test for gallbladder problems, I am facing a long weekend with my son. That night, as I am cooking dinner, the explosions start again. He’d had one after lunch and now he is in full, nuclear meltdown. He bites and throws and hurtles himself against all things and I desperately try to keep him calm. I call the Crisis Response Team and talk over my son’s screams. They tell me to call 9.1.1.

I call 9.1.1. and describe the situation. But instead of sending an ambulance, they send the police. It takes me a few minutes of conversation to understand that they are the police. I’m that stressed by watching my son flailing and bleeding so badly, his bedroom looks like a murder scene. I ask why they were sent instead of an ambulance.

“It’s policy when there is an aggressive person needing treatment.” The officer says.

He is actually very kind about it. And reassures me that I can have my son seen by medical professionals. He says he has special needs kids of his own–two. That sometimes you have to demand care to get it. Then he recommends I give my son his ‘calm down meds’–an antipsychotic, Lorazapam. I do, and the child slowly calms to a more manageable level.

But there are concerns about getting my kid to the hospital–they fear his explosions taking place in an ambulance ride.

So I take him myself. It is our third trip in as many weeks, but I can’t leave without some kind of proof of what’s going on.

We are there five hours. During this time, I review everything I’ve done to try and identify what is wrong. Why my kid is going through hell. I explain we were trying to get an ultrasound to rule out gallbladder issues. They agree to the test and then we wait.

I talk with the social worker about the possibility of my son needing admission for his behavior and am told he doesn’t qualify. The social worker is kind but direct.

“This may be a new level of increasing behavior related to autism as he goes through puberty. There is no evidence of any physical causes for his behavior, so that leaves mental ones. You will have to discuss medication options with your son’s psychiatrist next week.”

“I don’t feel I can keep my child safe. I’m desperate for help. Any help. I’ll do anything to help my son, but nothing is working.”

She has no answers and leaves the room.

I have been convinced for week that my son was in pain. That he was trying to tell me this through painful communication. I blame greasy foods, dairy, GI-Reflux and inadequate meds. I change his meds, his diet, and hope for a miracle.

It takes feeding my kid a plate of the greasiest chicken and french fries only to see no reaction for an hour and half afterward to prove I am wrong. I have mis-attributed my son’s behavior to gastric or dietary causes. Likely because it would be much easier to address a medical issue than face the idea that my son is suffering mental illness. That these are the growing pains of autism spectrum disorder and that no doctor, no matter how caring or qualified, can help me. My hope is shattered and I am a broken person.

They send us home. In despair, I ask the doctor, “What do I do if he explodes in the car on the way home?”

“Pull the car over.” Is her response.

Drained, we go home. It is past midnight. I am spent beyond words. And this is where things take a turn. Not for the better, but a point in my parenting that both fills my heart and tears it apart; I am fractured and glued back together for the sake of my son.

I pull into the garage and park. Get the kid out of the car, loopy from meds, and self-injurious bruising and cuts, and drag him to the house. He weighs over two hundred pounds and stands almost five feet, eleven inches tall. It’s like moving a sedated side of beef.

In the house, I smell it.

At some point, in my panic to get the kid help, I must have brushed past the stove knobs a fraction. After five hours at the emergency room, the house is full of gas. I barely have the energy to register that even turning on a light might have killed us both.

I turn off the knob and convince my son to go back to the car. He hates this. He hates that I am leaving two windows open a crack and that I’ve turned the fan on. In the past, this has caused him to rage uncontrollably, but he must be as tired as I am by our day. He is lured by the promise of a car ride.

I am so tired, I just want to cry and cry and sleep and sleep. Instead we drive north on Highway 131–a route my son begs for with no particular destination in mind. It is all about the soothing swish of trees going past. The sound of the highway and the Christmas Carols coming from the radio.

I consider calling friends. But it is 1:00 a.m. I can’t find the number to the gas company. So, after an hour, we go home. I am stumbling to stay upright. My son decides this is the perfect time to look for the moon.

Blurry with exhaustion.

In the house, a faint whiff of gas lingers. So, I grab two blankets and join my son in our snowy backyard. We huddle together on the bench and he pulls the blanket over our heads and then off again. It is like he is trying to play peek-a-boo with the moon. It is only now that I notice it is absent. The moon is hiding too. Perhaps some nights are just too hard to face.

After about ten minutes, the boy is all done and wants to be in bed. I cede to his demands. I don’t have the strength to argue. We don’t have the money to go to a hotel. And I am not functioning with my reason intact. It is the perfect example of how stupid decisions are made by supposedly smart people.

We survive the night. But the next day I review where I went wrong and what I should have done differently. I call people. I talk to people. I make sure someone comes over so I can relax my guard for a few hours. I can rest from battle for a little while, until I am ready to pick the shield back up again.

The hospital and doctors might have been right that there was no physical reason to keep my son. But, I will argue, they were wrong to send a parent home who has said, “I’m not sure I can keep my son safe.”

Sometimes, there is more than one person in crisis when you go to the Emergency Room. And maybe, I didn’t have the courage to tell them. But, late at night, I made a bad choice that could have cost us both. I made the choice because I was exhausted, stretched past my breaking point, and then sent home with no help and no hope.

And before anyone calls Social Services, I am not suicidal. It is not in my nature. But even strong people stumble. Strong people fall. And people who have had to be strong for years, break under the weight of it.

I want my child to be healthy, happy, and safe. It is the mantra I repeated to my son for hours while we waited futilely in the hospital room for answers. But sometimes, a parent just can’t make it happen no matter how much they want to.

I took my son off all of the antacid drugs: calcium carbonate, pantoprazole, simithecone. I was up to the maximum amount of antacids a day and he only seemed to get worse. Since taking him off them, I’ve had two full days where only minor explosions occurred. He got mad that he didn’t get Doritos when we went out. But no flailing limbs. No self-injurious behaviors of the scale I had been seeing. I won’t kid myself that this was the problem all along. Nothing is ever that simple with autism.

We are getting by. I try not to spend my day holding my breath every time I hear any anxiety-inducing sounds from my son. We canceled our trip to Chicago to see friends. We huddle at home and survive the reports of good cheer people share at this time of year. I try to notice the moments where ‘things go right’ simply by not going wrong. That’s our new ‘good day.’

I once described the stress of caring for a severely autistic child as always having to carry a cup of hot tea everywhere you go. Tea that is scalding and has to be handled with extreme care so no one gets burned. You can never set the tea down. The cup is filled to the brim. The cup is always in hand. Now I would add, during puberty, that in your other hand you have a live grenade. As long as you keep a tight grip on it, maybe nothing will go wrong. All you have to do is make sure you don’t scald yourself and drop the grenade, then everything will be fine.

Now all I have to do is to learn how to juggle.

Afterword:

I fell asleep that very dark night reading an article about Self-Injurious Behaviors (SIBS). I’ve gone back to re-read it a few times. I learn that “research suggests 30% of children with Autism Spectrum Disorder in clinic-based studies engage in SIB.” There is a lot of information in the article, but this is what I took from it:

“Psychologists observe SIBs in children and adults in the typical population and have conceptualized SIBs as a result of difficulty regulating extreme negative emotions, and physical and/or psychological pain (Skegg, 2005). “

“SIBs can be viewed as a nonverbal means to cry for help when the language and coping skills are not available, and/or the pain is unbearable.”

So, either my kid is in actual pain or emotional pain and he cannot tell me because he is non-verbal. So how do I help him?

In the neurotypical population, “Dialectical Behavior Therapy (DBT) is the most widely used, evidence-based treatment for SIBs. Dialectical Behavior Therapy is a modified form of Cognitive Behavior Therapy (CBT), which emphasizes the interconnectedness of one’s physiology, thoughts, emotions and behavior. “

If I hadn’t gone through a six-week course learning DBT, I probably wouldn’t have understood their definition of it. As it is, there is one major limitation to utilizing DBT with non-verbal patience. Primarily, it is a form of talk therapy.

“The hallmark of DBT is to help the individual with SIBs learn skills to communicate, regulate their emotions, and to develop frustration tolerance. “

“Interestingly, there is a strong association between challenging behaviors and learning disabilities, but the children with ASD who manifest SIBs are typically those with no expressive language at all (Moss et al., 2000). Children with ASD who are nonverbal or have lower levels of expressive language have higher incidence of SIB (Baghdadli et al., 2003; Chiang, 2008; Foxx & Livesay, 1984; Moss et al., 2000; Rattaz et al., 2015; Talkington et al., 1971).”

The conclusion of the paper offers scant hope:

“Since one of the major causes of SIB is physical pain, and some children with ASD cannot communicate that pain, we need to be diligent in the recognition and treatment of that pain.”

Okay, so make sure there isn’t a physical cause for pain. Check. So how do I help him?

“For children with ASD we need to focus on teaching them functional communication, and slowly build their tolerance for frustration and teach them to regulate their emotions. “

Teach my non-verbal child to speak so they can express what is frustrating them? Then help them regulate their emotions?

Better get that speech device fixed then, hadn’t I?

As a parent of a non-verbal child, I live with the exhaustion and frustration and do my best. But it is exceptionally hard to learn I’ve gone down yet another wrong path. I think the biggest comfort might be, there is no right path. There’s just the path you are on. You walk it as best you can and hope that the moon appears to light your way on the darkest nights.

And for those of you who miss my humorous articles. I do to. I miss laughing a lot. I hope to find my sense of humor soon. Perhaps it’s hiding with the moon.

42 thoughts on “Hiding from the Moon on a Very Dark Night”

  1. Oh my friend … I am so, so sorry! But you express a truth here that is honestly profound, and it applies to everyone, I think. It certainly applies, often, to me. “There is no right path. There’s just the path you are on. You walk it as best you can and hope that the moon appears to light your way on the darkest nights.”

    Wishing you the moon on your shoes, so that you can always see your path.

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    1. Thank you. It may be a bit maudlin, but I appreciate people relating to my words. I liked the moon imagery–which came very late to the piece. Mostly I write to expunge the pain. It’s like mentally lancing a boil, if I’m honest. That anyone reads it suggests either very caring people…or masochists who really like emotional gore. I suspect you are the former, as you have been a constant in my blogging universe. Thank you for that and for all you share and do here in the Blogosphere. We need more true voices.

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      1. I’m here because I like you. Also, I like the way you write – it’s completely honest, and it’s also grammatical, correctly spelled, AND evocative. That’s a rare and welcome combination! I hope Christmas is treating you well. We’re having a very quiet do-nothing day that is SO MUCH BETTER than last Christmas when the Hubbit was in rehab!

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      2. I’m glad you find worth in my meandering musings. I am working on my writing, trying to be more concise, but sometimes, the story just comes out the way it does. I’ve learned that I write for myself because trying to write as anyone else is doomed to failure.

        We’ve had some good days in a row. Right now he is with an aide upstairs while I type away responding to my friends. My internet friends. The people I meet in lines of data. Who could have imagined this world just a few decades ago? (Probably scientists and science fiction writers, but my lack of vision hampered me.)

        I’m trying to appreciate a quiet day. And I’m happy to hear your husband is home and, presumably, doing well. When the kid is safe and happy and I can lie down and relax a bit. I just have to fight the slug that invades my system and shuts down all bodily functions except the finger using the remote control to the tv. There’s been a lot of Law & Order going on around here. I may need an intervention…”Bump Bump” (If you get that joke, you too may have a thing for Jack McCoy.)

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      3. Bing bing BONG… Ugh, Law & Order is so horribly addictive – although I don’t get the reference to bump bump, please explain! We don’t have a TV but if I’m not careful I can spend hours watching Australian 69 Minutes and true crime stories on YouTube.

        Stop fighting the slug. First, it’s not a slug, it’s a soft, nurturing bunny that knows you need time to rest and snuggle and treat yourself gently. Stop pouring salt on the bunny! Feed it carrots! (In cake form works too!)

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  2. I wish I could wrap my arms around you and show you the full moon on my snowy mountains and then, by some miracle, your boy could speak. You are heroic. I could never do what you do every single day with courage, hope, and love. ❤

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    1. I would like that too. We have about five more days off before we’d have to drive back. How far away are you? (Hahahahahhahah. Okay, maybe I’m laughing a bit hard at my joke. But I can use a reason to laugh. I was picturing your face if we showed up, unannounced, on your doorstep. Maybe not as funny if it actually happened, but funny to picture it nonetheless.) I hope the season wraps you in a warm, hypoallergenic hug. I would have said ‘wooly’ hug, but I am sadly allergic to sheep. The sheep are no doubt grateful.

      It is entirely possible I need a second cup of tea, after reading what I just wrote. Merry Day to you and yours!

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      2. He’s got mixed feelings. He’s drawn to dogs and terrified of them at the same time. The fact that I’m pretty allergic to most creatures pretty much means we can admire them from afar. Though, I do make a point of introducing my son to any dog whose owner is willing. It is a slow inoculation against fear.

        I think he’d love to meet Bear and Teddy…and then try to grab the back paws to shake since facing the other end is easier!

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  3. OH, HUGS! I hate being That Person who always tries to offer advice, but I can’t help it. I suffer from EMD — Extreme Momliness Disorder. One of my sons-in-law is an art therapist, so my thoughts go to the possibility of Alexis using art to communicate? And maybe talking TO him about the connection between physical and emotional pain would be of some benefit to him? And maybe to YOU? From what you’ve shared, I gather that Alexis is a very clever young man. I’m sorry. I’m sending virtual hugs and wishing I had the nearness and the capacity to give you some relief. HUGS

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    1. Relief comes in many forms. Having this space to vent and be consoled is of immeasurable comfort when I am having a poor-me moment. I love the attention. (I’m a bit of an attention whore, really.) Some of the hardest parts of being the mom I am is I crave the exchange of ideas, words, word play, humor. But, every once in a while, we strike a chord together.

      My son loves calendars, time, seasons, weather. One of his favorite jokes is to declare a month that it isn’t. Lately, all I hear is “November!” I will correct him and say, “Noooo, it’s not November! It’s December!” This is all done with an exaggerated voice and mannerism. He loves it. He’s giggled until he hiccuped. This is such an odd juxtaposition with his enormous size. It’s like watching a mountain laugh with glee. My heart melts when we have these moments. They are rare, but all the more special because of it.

      Soon we will say ‘Bye Bye, 2019’ and ‘hello, 2020!’ This is a sing-song exchange I have with the kid. He understands the change of seasons. He tolerates my attempts to shove a little science into his obsession, though he has yet to appreciate waking up or staying up late for lunar eclipses. What he loves, he loves with his entire being. Everything else is just an inconvenience keeping him from his obsession.

      Hmm, apparently I’m feeling chatty today. Forgive me. I like being able to say something nice about the kid instead of just complaining about him. It is easier to do when I’ve had a few good days in a row. I hope your day is equally nice.

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      1. Funny, this is true of me… “What he loves, he loves with his entire being. Everything else is just an inconvenience keeping him from his obsession” which is, as apparently is also Alexis’, the magic of the world. ❤

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      2. Something I love about your writing is that you NEVER complain. We have to intuit the pain you’re feeling – you don’t name it. Your writing is an excellent example of “show, don’t tell” … It’s all about “So … this happened” and taking us, the readers, along for the ride. Please don’t apologise for it, Kiri. Reading about your life has made mo a much more patient and empathetic person when I see a kid having a meltdown out in public. I’m glad it helps you, and that’s the most important thing, but you need to know you’re making a difference too.

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      3. Hmm, it’s weird. Telling is all I seem to do when I write fiction. Perhaps I need to figure out how to translate what I do on a blog into my literary efforts? A thought to ponder when I’ve had a bit more sleep and a few more good days.

        Thank you for saying what you said. It feels like I am a complainer. I think it’s something I bring with me from childhood, when I was told to stop being negative all the time. It became who I was, so that all expressions start to sound like complaints in my own ears. And yet, I can’t stop with the talking! Does anyone hear their self (?themselves?) with an accurate understanding of how they sound?

        Thank you for being a non-judgmental witness and so supportive. I really, really appreciate that.

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      4. I’ve never seen you complain about “the kid”. You’ve shared your worry and frustration about his troubles navigating a world that isn’t structured to understand and nurture his uniqueness, but I’ve never heard you say anything about HIM except how precious he is to you and how much you love him. Maybe not in those words, but loud and clear. HUGS again.

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  4. I wish I had something positive to offer, beyond letting you know that your words are read and thought about, and that there’s obviously a bunch of people reading and caring — however impotently.

    Art therapy crossed my mind too, more specifically music therapy. At the risk of comparing apples with oranges, an acquaintance’s severely autistic son has a drum kit (yeah I know, it had to be drums right), and that seems to calm him.

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    1. We tried music therapy early on, but it was more along the lines of teaching piano and trying to encourage the kid to perform and comply, rather than to reach him as much. He showed aptitude, so I kept forcing it on him. Let’s just say, when he was big enough to say ‘No’ we had to listen. I still harbor hope that music will be for him what it was for his father. But forcing your child into an uncertain mold never works well for anybody. Particularly the mold.

      I guess I should be grateful he never fell in love with drums, shouldn’t I?

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      1. Do you play much music in your home? I can’t help wondering how he’d be affected by the classics – Bach and Mozart come immediately to mind because their music has such precision, and is so joyful. Well, some of it. I’ll be happy to recommend some of my personal favorites for you to try, just as background music to see how he responds.

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      2. We sometimes have music. It’s weird, my husband played a guitar so there was always music in the house. Usually he was playing it or playing his favorites. Typically, I just listen while in the car. But I have a stack of classical stuff I put in once and a while to fill the emptiness and warm up the air. The kid doesn’t seem to notice, unless it’s something he hates. Then I definitely get some words or actions letting me know he’s “All Done” with something. But, happily, let me know your favorites. I’ll see if it’s already in my stack or if it’s something I should check out!

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      3. I’m sorry your experience with it wasn’t so great, and I agree, nothing good comes from forcing it.

        My friend eventually lined his kid’s room with egg cartons and stuff as sound insulation so that the drumming could continue, and I’m not sure if formal lessons were/involved, but I guess that’s a major difference between piano and drums

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      4. I’ve been considering lining his room so he can’t hurt himself. Sound baffling would be an added benefit I hadn’t thought of. He is very ear-centric when it comes to pain and being overwhelmed.

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    1. It would help if it weren’t so damned big. Where’s a good head-shrink ray when you need it? (I’m feeling a bit punchy today. I’ve had five good days in a row. This makes me giddy.)

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  6. Oh my God. I am so sorry, so very sorry you’re struggling hard right now. Very, very glad you didn’t make a single spark. Moon watching in exhaustion may not be ideal, but it seemed perfect at the time, I’m sure. Like, I’m glad. And while I am glad his physical health is looking okay, I am so sad that he is experiencing emotional pain and can’t cope. I hope you both get some answers.
    Props to kind policeman.
    Hugs to you.

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  8. This is such a tragic story. With my son, high functioning, my wife and I experience a tiny fraction of what you do. And still we feel so alone. Do you have access to support groups? It seems mandatory to have some understanding adults in your life.

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    1. I get some help from the state. Rather a lot, if I’m honest. Even with help, though, it is a lonely place. Unless someone has been in your situation, I think it can be hard to understand the isolation. Others don’t notice your absence, or, if they do, they can’t imagine WHY you’ve chosen to barricade yourself at home rather than face the world and all the struggles inherent in breaching the bubble you live in.

      When my son was younger, it was easier. At the time, a distant relation on my husband’s side, had an older child on the spectrum and she never attended family gatherings, despite a warm invitation. I didn’t understand it then. “Why wouldn’t she want to be with such a loving, open family?” I thought. Now, I understand. It is just too hard, involves too much risk, has so very little to offer when you spend the time anxiety-ridden and distracted by keeping your kid from committing chaos on an unsuspecting public.

      I may be over-sharing. My apologies. This is the danger of offering empathy to a lonesome soul. They will try to suck you down into the darkness, just on the off chance you’ll bring a little light with you.

      I may also be vibrating from the third cup of green tea I am consuming at Panera. They really shouldn’t offer free refills.

      Thank you for reading my account. It feels like being part of a community, if from a distance, when people can relate and sympathize. Just don’t get sucked into the morass, if you can help it.

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      1. Not over-sharing. I really enjoy wordpress engagement. My isolation due to mental illnesses make online relationships much more comfortable. Although all of us in my house are working hard to break out of this mindset.

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