What do you do when you have a nightmare? Do you wake up in a sweat, unable to comprehend your location and what just happened? Does reality hit you, so you cuddle up closer to your significant other? What about when your children have nightmares? Do they scream out your name in the dark of the night? You rush in, heart racing, and welcome their shaking little bodies with open arms. You whisper that everything will be all right as you comb their hair with your fingers and hum sweet lullabies until the crying stops. They look at you with absolute calm and appreciation, then drift off to sleep with little grins. You creep out of the room quietly, and close the door, ever so gently. Then you smile to yourself about how you saved them, and you are greatly to be able to comfort them afterwards, even though you can’t stop the nightmares.
Id any of that sounds familiar; you don’t have an autistic child. When my son wakes up from a nightmare, he stands up screaming. He is nonverbal, so there are no words or even baby garble that escape his lips; just screaming. I run in, never knowing what to expect. Sometimes he’s already back down and I can pet his head firmly until he is clearly drifting back off. Other times, more and more often these days; they turn into my own nightmares. I run in, heart racing, and he’s throwing his blankets and hitting his crib. I try and comfort him, rub his head, whisper to him, but he is unreachable. I try picking him up and soothing him with bouncing, rocking, rubbing, humming, anything and everything. He flails violently; hitting and kicking me. I set him down gently and try to talk sweetly to him. He yells, tears and snot streaming down his face as he tries to not only comprehend what happened, but to express it. More yelling, more hitting, he starts taking his frustrations out on his own body now; throwing himself to the ground, slamming his head into the floor. I try and stop him with my hands or putting a blanket down. This angers him further.
I decide to turn the lights on. It would wake up a “normal” child and prevent them from falling back to sleep, but not with my “special” child. He looks around and seems to feel a little better. I try to touch his hand and he retracts and begins yelling and punching the crib again. His dad tries to give him pressure hugs and pressure massage, to wake his body. It doesn’t work. I try slamming the nightstand door, this helped last time. It doesn’t help this time. My husband grabs a car track that is small and has 4 small cars that go down it in a zigzag motion. Little Man stops yelling and almost smiles as the cars clank loudly in the night. Daddy tries to get him to come over, I offer him a hand over, but this angers him. We wait, as patiently as you can in a half-sleep wake. He grabs his blanket and hits it. I wrap it tightly around him and set him in front of the game. He smiles and does his finger dance (he only does when he is happy). He takes one car and watches intently as it clanks down the ramp. My husband slips downstairs to get a glass of milk. I talk with Little Man and try and be as calm and happy as I can be. He loses interest in the game quickly.
I put the game away and draw his attention to a book we hadn’t read in a long time. He doesn’t want to turn the pages, but he puts up with me reading. When daddy enters the room, Little Man reacts angrily at the cup and pushes it. We say ok and watch as he lays on the floor, and eventually picks up the cup. This is our cue. I pick him up and put him on my lap in the rocking chair while he drinks his milk. Daddy turns down the light to low and sneaks out. Once he finishes his milk, he sips a little water and I slip him into his crib. I rub above his eyes; he makes no eye contact. I tell him I love him, he doesn’t look towards me. I rub the blanky on his face and make sure the tag is in his hand (he can’t sleep without it). He doesn’t acknowledge a thing. I tell him I love him, turn off the light, and slip from the room.
What does he dream of? I have no idea. Is it violent, scary, are we in it, what’s happening? I have no clue. What I do know, is that I can’t comfort him. There are no cuddles to ward away the demons. There are no soft words to ward off the monsters. There are no lullabies to slip him into a sweet dream. In fact, there is no positive exchange other than the lack of negative behavior, that tells me that we helped at all. It’s very difficult to stay absolutely calm and smiley, when you have been woken out of a dead sleep, hit, kicked, screamed at, and had things thrown at you. The worst part is, if you manage to save them from their fit, there is no recognition of the action. There is no reciprocation of feelings, love, or adoration. We did our job, now we must leave.
A “normal” parent can’t understand the absolute heartache of having an Autistic child. It affects your heart in every way you never knew was even possible. And 9 times out of 10, it hurts like a f*cking rusty nail on fire that’s being jabbed through your heart. Here is this little creature that you grew and nurtured for 10 months, talking to, singing to, dreaming of, and things only a mother could understand. Then this creature is born and the bond is eternal. You continue to care and nurture, but as time goes on, the need for you and your companionship is quickly thrown away. Not tossed aside like most little kids that grow towards independence, but in a way that makes you feel like this little person, whom you would die for, can’t stand you. Your touch brings no comfort. Your words are lost on empty ears. And your tears mean nothing. You understand them as about as much as they understand you.
I saw mothers dropping off their kids at ABA therapy and speech therapy; making a run for it like this was the best part of their day. I couldn’t understand it. How could you feel that way towards your precious/priceless miracle that you made. But now I understand. Because each fit, each nightmare, each meltdown, each tantrum, each time your hug was pushed, each time your hands were hit away, each time you looked longingly into eyes that looked away, each time you held out your arms, only to be ignored…it killed a little piece of you. Slowly, but surely, over time…it killed you. Not everyone is cut out for this job, and not everyone can do it. I can see how easy it would be to give up. I can see how. I understand now. I no longer look at them in disgust. Instead, I look at them and wonder; what was it? What was the last straw that broke your heart past the point of no return? At what point did you decide you were done trying to love someone who seemed like they didn’t love you back?
But I also know, that without work, without dedication; nothing can ever get better. Little Man will never learn how to speak, if someone doesn’t teach him how. He will never learn how to read, if someone doesn’t teach him how. He will never learn how to interact with people in an appropriate way, if someone doesn’t show him. This impossible job, is of course; mine. And this will kill me. Of this, I have no doubt. To endlessly love and devote everything to someone who hurts you more than anyone else on Earth…how could it not? How can you not lose a part of yourself each day, when each day you are treated like the enemy? To have your loving hands hit, to have your smiling face slapped, to have your absolute caring eyes never met with the same feelings.
I have been told by moms with older children, that it gets better. I can’t see it. I truly, cannot see it. I used to. I used to dream of talking to him. I used to dream of at least exchanging texts with him, if not talking. But that was when he was happy, smiling, shaking his arms and legs in excitement. He doesn’t do those things anymore. He smiles, but not as often as he used to. He doesn’t shake his hands or legs anymore in excitement; I don’t know why. He doesn’t want to play with his toys, even when I exchange them out for ones he hasn’t seen in a while. I buy him the latest toys and contraptions for sensory input, games for improving his mental abilities and enhancing things he likes (like reading and math). I learn new signs, I learn the next phase of PECs and try and teach him. But he has stopped signing, and doesn’t want to use PECs. The ABA therapist thinks it’s because he hasn’t been sleeping well. But I don’t know. I don’t know anything anymore.
After you have a child, you are told there is no book on parenting that specific child. I call bullcrap. There are thousands of books out there on parenting children. Pick and choose and you can pretty much raise a child to be almost normal. But on parenting an Autistic child? Their symptoms and severities are so varied, and everything about them is so unique; good freaking luck. You are blind, deaf, and paralyzed in a world that no one can explain to you.
Welcome, to the nightmare.