Recently the school nurse called me twice in one day to tell me that Jack was hitting his head against things intentionally. I gave permission to for him to have ibuprofen the first time, and Tylenol the second. That took care of any headache caused by the hitting, but what about the cause of behavior in the first place? Was it frustration? Did he not feel well? Aside from scheduling an appointment with the pediatrician for after school (done) and using PECS and signs and telling Jack “show me,” what do you do when you don’t know what your nonverbal son needs?
This feels like a repeating scenario which defines special needs parenting, or “parenting in the dark” as we could euphemistically call it.
I do not mean to diminish the challenges of parenting typically-developing children. Parenting is hard, period.
But parenting a kid who can’t speak, who has complex medical issues, who has violent or destructive behaviors, who has mental delays—it’s a new level of tactical battle.
I’m beginning to view raising Jack as analogous to writing, perhaps because writing is something I do and teach, confidently. And consume, in the form of all the books written by all the people. Writing is one area where I feel I have things in hand. I know what I’m doing. Whereas with parenting people with special needs, you can learn a great deal and try all of it, which is very nice, but which guarantees nothing in the way of success.
So. Here is the comparison brewing in my mind: it’s a process. Parenting AND writing.
My friend and mentor, Ann Cannon, talks about trusting the writing process, of knowing that ideas will come, of using old & reliable as well as new & creative methods for writing when you feel stuck, of giving yourself space to ruminate and ponder, of and seeing the doing of it as something enjoyable.
It’s good advice for writing, and I’m beginning to see it as good advice for raising children who aren’t your average everyday small people.
I honestly don’t have the answers for Jack. I don’t know what is wrong when he bashes his head against the floor, or breaks the window in his bedroom, or does Angry Tongue Face and charges at people. He’s frustrated. He’s mad. He can’t speak and he is developmentally delayed and it isn’t fair. And the head banging this week? It was because he has another ear infection and it hurts.
Here is how I interpret the process of special needs parenting: I must foremost calm my own panic.
If I do this, I can think dispassionately about the time Jack stopped walking for a week, or got a horrific skin disease that lasted six months, or had 75,000 ear surgeries, or got the stomach flu twice a year and covered the house in eau de vomit, or how he drew with Sharpie on the cabinets, or how he threw lamps off the deck.
And if I remain calm, I can realize that we have always made it through. The answers have always eventually materialized.
I dreamed last night that I was walking along a path beside a lake. I was alone.
An enormous grizzly bear emerged from the woods to my left and came swiftly up the hill toward me. There was no time for escape. A voice in my head warned, “Curl up and play dead.” So I did. The bear straddled me, stopped, and pushed his nose into me. I felt hot breath on my neck and smelled decaying leaves and cold water and wet fur. My heart skittered.
“Help me,” I prayed, silently screaming. I did not breathe. I did not move.
The bear pushed a giant paw at me. His claws scraped my arm. I remained limp. The hot animal breath receded and the bear walked away.
When I woke, I knew exactly what the dream meant.
I was afraid of the bear, like I am afraid of Jack’s future.
What new terrors will come? Will he wreck our house to the point that it implodes? Will he throw something at my head while I’m driving and knock me unconscious? Will he have to live in a facility one day where he isn’t loved or appreciated, and where the risk of abuse is high, particularly as he is nonverbal?
These fears are my grizzly bear.
But my dream spoke to my fears and disintegrated them. The same voice in my head that warned me to play dead when the bear approached also told me this: when your fears approach swiftly, with rippling fur and deadly claws and teeth, you only have to listen to be safe.
Trust the process of living without all the answers.
Trust when the spirit whispers.
Trust God, who knows.