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…
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.
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.
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.