I’m a social worker, I’m fond of talking about things no one else seems to want to talk about. Maybe that’s because I use language to process my emotions, to make sense of my world. Or maybe I’m just a glutton for emotional punishment. In any case, I’ve decided to take a leap and let you all in on what’s been going on in my autism world recently.
You’re probably thinking “Whoa, what an introduction… let me go refill my coffee cup before I dive into this…” Or perhaps you’d rather jump on over to Big Daddy Autism or Autism Army Mom for “the lighter side” of the autism life and some comic relief. Yeah, me too. I mean, seriously, I would rather be writing about funny stuff my daughter says or dancing in my living room in fancy costumes. But this is a topic that for me right now simply cannot wait. I am struggling over here. And I know other moms are too. It’s the elephant in the living room and I’m gonna talk about it:
My child got violent. Out of control, state-of-emergency violent.
Big. Bad. This-is-not-how-the-world-is-supposed-to-work, cry-out-loud-on-my-knees kinda violent. He broke a school bus window with his head. He got so destructive in his classroom, the teachers had to clear it out. Both of those incidents resulted in 911 calls. He has been hospitalized three times over the last two months. He has been picked up and carried to padded rooms in psych facilities. He has bitten, kicked, punched and spat at nurses, counselors, therapists and autism experts. His destructive behavior has broken countless things, big and small, including several hearts…
We have tried various medications but none have worked. We are now on a fourth medication (which so far seems to be helping to stabilize things– fingers crossed) but regardless of how well it works, the doctors have recommended
It took me a long time to get up the courage to face those words. I am still hopeful that residential treatment for Alex will mean a short-term stay at a residential facility, and that he will return home soon to me and his dad. I am not ready to give up that vision– in fact, I’ll tell you flat out that I believe in miracles of all sorts and that my son’s autism story does NOT end here, especially not with facility-based treatment.
So by this point I am betting you are silent. If you are a teacher or mother like me– one living in this “alternate” world of challenges– you probably feel a pang of empathy and saddness. If you are not connected to autism or my family, perhaps you are curious about this part of our journey. Or perhaps you are thinking there is someone you know who “needs to read this,” a person in a similar situation to mine.
But I am not writing to inspire anyone. I write because I need to say out loud, “My child is the biter.” I remember when Alex entered preschool and I was new to the world of stay-at-home moms. Other parents and I would convene outside the school after morning drop-off and talk about mom stuff. Mostly light funny stories, or sharing the stress of balancing family and work and life. Once in a while someone would have an anecdote about another child or parent– usually a person no one in the group knew well– and there would be whispers about a behavior, a parenting style, an interaction at school. I would walk away thinking to myself, “I’m glad my son is not the biter.”
Well guess what folks. My son *is* the biter. He is the child I am raising. And guess what else? His violence and destruction, this current struggle to remain optimistic about his future and to find my way back up after I’ve been knocked down (literally and figuratively), does not change all that I love about him or his innate potential. He is still the miracle child of my six-word memoir, the sensitive special child I will always believe in, against all odds. I give you this ramble today because I want you to know how important it is to me that the world not give up on my child– or on me. I want to talk about the elephant in the room because I understand better now what happens when a child is “the biter.”
We all need to feel some sense of control over our worlds and our futures. To think that we don’t truly know what tomorrow holds, or that the actions we take and the choices we make will not necessarily guarantee us safety and security, or protect us from what frightens us most is too much for the average psyche to handle. So we whisper about it and thank the stars for the narrow escape we just made from that particular heartache. We talk about “warrior moms” and applaud people who find the “cures” for autism, we try remedy after remedy to balance our lives so we can get through the days of this journey. But sometimes, despite all this, we find ourselves on yet again a different path. I had found hope, I had a good plan and the right helpers, and we were on track. Then the scary, violent stuff came.
Now I’m going down a new road– and no one seems to be talking about it without whispering. But I am an average mother with a son who is almost as big as I am and soon to begin puberty, a newly single parent who is also raising a typical first-grader. I know from basic statistics that I cannot possibly be the only parent in my position, given the current divorce rate and the fact that 3 out of 4 children with autism are male. And I am betting there are many other mothers in the world who are right at this moment surrounded by people and experts and “solutions,” but who are still silently screaming at the same crazy situation I am.
So there you go, I brought it up. Check out that elephant folks– it’s a big one. Powerful animal, wrinkly and gray, it could crush you if you’re not aware of where it’s standing. Oops– now it’s eating the candies out of the dish on your coffee table. Someone please step up and talk to me about it.