It would happen like this. My husband and I were in the kitchen after dinner, scooping leftovers into plastic bowls and loading the dishwasher while one or two of our kids cleared the table. Carter, five at the time and our youngest child, came into the kitchen too, maybe trying to help, maybe just wanting to be where the action was.
“Carter, watch out! I almost stepped on you!”
“Carter, you have to stay out of the way!”
Inevitably, after some minutes and swelling frustration, “Carter, move!”
After this last, Carter burst into tears and my husband and I felt terrible about ourselves for losing our patience yet again.
Or it would happen like this. I settled into my nest in the corner of the couch with a cup of coffee and my Kindle. Between the Kindle and my face, not an inch from my nose, appeared two hands. One attached elbow tipped over my coffee cup as the two hands grab my cheeks and turn my head toward him. “Mom!” Carter yelled, “I have to…”
“Carter,” I squeaked, “You scared me!” I went to the kitchen and snapped open a dishtowel to clean up the spilled coffee while I yelled, “Don’t stick your hands in my face! I’ve told you and told you I hate when people put things in my face!”
Carter burst into tears and I felt terrible about myself. Lather, rinse, repeat, many times every day.
All the doctors and health care professionals who took care of Carter were very concerned with his Big Symptoms: dangerous mood swings, sleep disorder, outrageous and destructive tantrums, suicidal ideation (and one suicide attempt), OCD-like behaviors, and crippling general anxiety.
With so many important issues to deal with, it’s probably no surprise that we missed things, but I am filled with guilt and sadness when I remember how angry we got with Carter back then. He could not read or understand where other people’s bodies were in space, or predict where they were going to move, a skill most people learn during the toddler and pre-school years. Likewise, he couldn’t respect other people’s physical boundaries and would jump on us, grab us, knock us down, and even be as physical with strangers as he was with people he knew.
The trouble with the getting medical care for Carter was that every person we encountered dealt with their area of specialty and no one looked a the entire clinical picture. The gastroenterologist investigated his guts, and the pulmonologist took care of his lungs. The pediatrician gave him his immunizations, treated his strep throat, and wrote referrals to specialists. The neurologist looked at his MRI and the psychologist talked to him and the psychiatrist has always been a dream but the appointments are never quite long enough to get to every single issue.
So it was that when Carter was six, we were still flailing about with this issue of personal physical space and hadn’t yet realized that it was an important symptom stemming from the prenatal brain injury he suffered. Finally, Carter’s psychologist assigned our family a behavioral management specialist (BMS) who would come to our house every week.
During her first visit, our BMS noticed the way Carter flung himself onto me, climbing on me and similarly invading everyone else’s space.
“Is that usual, or is he reacting because I’m here?” she asked.
“Always! He’s always on one of us, or getting in our way when we’re trying to move around. Eventually someone’s going to get seriously hurt.”
“Ah,” she said, and made a note.
“What is it?” I asked, trying to peek over the top of her legal pad.
“Oh, probably some kind of agnosia. It doesn’t matter. It just means we have to teach him something that most people learn naturally.”
Whether it mattered or not, I was on my computer later that night, eager to know what agnosia might mean. It’s an umbrella term that describes a broad group of neurological conditions which are all, at their most basic, “an inability to know, to name, to identify, and to extract meaning from visual, auditory, or tactile impressions.”
Such a relief, to read words finally that described my child, and so terrifying to attach yet another scary word to such a small boy.
When our BMS returned the next week, she told us, “You’re going to have to be so repetitive it’s going to make you nuts, but he can learn this if you’re persistent enough.”
We began with the bubble. We taught him that he couldn’t enter another person’s bubble (meaning he had to stay an arm’s length from any other person) without their permission.
The bubble was very difficult for all of us, stuck as we were in a habitual loop wherein he invaded our space and we usually reinforced this behavior by hugging and cuddling him and occasionally losing our patience and hurting his feelings by speaking harshly. We had to learn, whether we wanted him in our laps or not, to respond by reminding Carter of the bubble. He was then to stand back and ask, “Can I hug you?” or, “Can I sit in your lap?” We would respond, depending on our feelings, by inviting him to move in for a long snuggle, or a brief hug, or a request that he come back later.
It sounds very unnatural and stilted, and it was, but after a few days I could see that, as unnatural as the whole performance felt, it was infinitely better than losing patience and yelling. I found, too, that as he startled me fewer and fewer times each day (as he began to remember on his own to ask before he entered my bubble) that I had more patience for him in general. Now, at almost 13, Carter usually respects the bubble, and when he doesn’t, a brief reminder is all that’s needed.
As for his inability to know where another person is moving and being able to mostly predict where they will be (as most of us can do when we’re in a crowded kitchen, or shopping on a busy day), we found eventually that it wasn’t something he could learn. I suppose it’s something that’s hard-wired into our brains and that it’s one of the things that was swept away when Carter’s brain was hurt before his birth.
Eventually, we worked with an alternative set of skills that solved some of the problem. We avoid crowds, try to shop when stores aren’t busy, and encourage Carter to stay next to the shopping cart. I encourage him to walk next to a wall, fence, or shelf, which seems to help when we can’t avoid being in crowded people. When he’s doing something in the kitchen, I wait until he’s done to enter, and when other people are busy in the kitchen, we ask him to wait.
Thank goodness we landed on some solutions, because even in the midst of big, scary symptoms, it can be the smallest of problems that tear relationships apart, and the simplest solutions that save us.
About the Author
Adrienne Jones lives in Albuquerque with her husband and children, and in the hours just before dawn, you can find her at her desk in the little office next to the kitchen, writing stories. She blogs at No Points for Style.
Find links to almost everything she does on the internet at about.me/AdrienneJones.