Updated: Feb 9, 2021
Rose and I had a conversation a few months ago about PDA. It was a profound conversation, but the details of that conversation are not what I will share here today. All I want to say about that for now is that I was incredibly nervous before the conversation, and immensely relieved afterwards.
Now, I can talk about PDA more freely, in a nonchalant, hopefully helpful, affirming, normalizing, clarifying kind of way. It’s starting to make me feel freer, and I see that happening for her as well. It has completely changed the way we understand and communicate with one another, and the trust that underlies that.
One of the first times I saw how the dynamic was changing, was a few weeks before Christmas this year. We were working on an art project together in her room, and I started mindlessly singing,
“You better watch out, you better not cry, better not shout, I’m telling you why...” and I stopped myself and said, “You know what? That is not a very PDA-friendly song!”
“Why?” Rose asked, looking at me.
“Well, for a person with PDA, feeling free is especially important, and that’s a good thing, right?! It’s good to know what you want to do and not be made to feel you have to do things...and being told ‘you better do this, or you better do that’ can feel really bad!”
Rose stared at me, considering my comments and then she got into this premise and chimed in,
“Yeah! And even if you need to cry, you should cry! Santa will still come to you anyways!”
Another time I realized that naming and embracing the way Rose’s PDA brain worked could change our dynamic was on a recent Saturday. That day her mood had suddenly become jabby, provoking her brother and starting to spiral out. I pointed this out to her and asked what she thought would help. She said she needed to watch a show.
“Okay,” I said. “Let’s get dressed and tidy up a little bit and you can watch a show!”
She had something particular in mind that she wanted to wear, and began digging around in a basket of freshly folded laundry. Paul reacted with,
“Hey, please be careful, you’re messing up the folded up laundry!”
Suddenly, she flipped the whole thing over, knocked it around, stormed out of the room, shouted at her brother and spit at me. Paul’s seemingly innocuous parental response had triggered her fight or flight response. As the rampage escalated, I swooped Danny up, put him in his room with Paul to finish working on the laundry in peace, and proceeded to get ready for the day myself, giving her ample space to fume.
A few minutes later, she called me to her,
“Momma? I’m sorry. I get out of control and I can’t help it.”
“Thank you so much for saying that, I really appreciate it. But you know what? I have seen you finding more and more ways to be in control and stay safe when you’re feeling wild. You’re getting amazingly good at it!”
“You think so?” she asked.
“Oh yeah,” I continued. “I’ve seen you take breaths a lot of times when you’re getting frustrated. It’s really impressive. You’ve taken breaks and space when you need it. It’s been helping you stay more in control so much!... But Rosie, I’m sorry. Because I realize that daddy and I were asking you to do a few things when you were already overwhelmed. That’s something about PDA is that being made to feel like you have to do things can make you feel really unsafe, hey? So you respond by fighting or getting somewhere that makes you feel safer. But you’re helping your brain let your body know when it actually is safe, you’re really doing a lot of work, I see it and am really impressed!”
She heard me, took it in, and seemed to feel better after that.
To my delight and surprise, these heartening moments have continued. For example, Rose has been really into Rummikub lately. A few nights ago, she asked Paul,
“Daddy, will we have time to play Rummikub after dinner?”
“Let’s see what time it is when dinner’s over. I think if you gobble up all your food, we will have time for a game.”
“Don’t force it, dad.”
Yesterday, after her bath, Rose wanted help getting dressed. She usually gets dressed on her own, but she let me know that she was planning on wearing wooly long johns, and the layering made it all harder, so she wanted my help. Danny was yelling in the other room for me to help him with something. I quickly said to Rose,
“Okay. How ‘bout you put on your woolies, and I’ll come back and help you with your second layer in a minute... and put on fresh undies!”
I came back a few minutes later to find her still naked, swinging in her pod swing, obviously unhappy and put-off.
“What is it?” I asked.
“You told me ‘put on your undies!’”, and she gave me a meaningful look.
I was struck by how she could communicate this to me: the discomfort I caused by giving her a direct demand.
She is developing the self-awareness that that kind of demanding phrasing is intolerable for her, and she pointed it out to me clearly and calmly. I responded with,
“Oh my goodness, you’re right! That didn’t feel good, did it? Thank you for pointing that out to me. Rose dear, would you please remember to put on fresh underwear?”
She smiled, relaxed, and got dressed without a further hitch.
It had been three months since my son had eaten protein. At the end of summer, out of the blue, he had started refusing the last vestige of a somewhat balanced diet - organic, whole chocolate milk. His diet had winnowed to potato chips, pop tarts, non-organic Honeycrisp apples, and hot popcorn. The agonizing hours I had spent trying to decipher an underlying logic to his eating -- consulting research, therapists, doctors -- had proven futile. Was it a need for control? Sensory issues? Or simply the way the stars aligned, setting into motion the invisible forces that directed my son’s brain to change course?
One day in late Fall, as he dashed down the stairs after occupational therapy in only socks, he shouted a request to go to “Old McDonald’s” on the way home. I gladly obliged and that day we purchased his first Happy Meal. He happily ate three chicken nuggets. For the next two months, we continued the post-therapy McDonald’s sojourn. On Mondays we ordered a Happy Meal and on Wednesdays, six chicken nuggets. This was a hard negotiated compromise. I wanted to avoid the Happy Meal altogether, replete with its plastic wrappings and the greasy fries that he would simply throw onto the van’s floor. But I wanted him to eat. So on we went, week after week.
In mid-December, on the way home from therapy, he surprised me again by announcing an alteration to the McDonald’s order,
“Mama, I want apple slices, but with honey to dip them in.”
As we waited the three minutes for the order, I tried to manage his resistance and anxiety to the demand of simply waiting.
When the food arrived, I began my own OCD-defense against a potential meltdown. I slightly untwisted the cap of the chocolate milk, in case he wanted a single sip that day, and tore the plastic wrapping of his surprise toy just slightly so he could easily open it without getting enraged. I made sure to not open it all the way, which could lead to an explosion because I had done the whole thing for him. Once again, I found myself trying to balance on the razor’s edge of his regulation, trying to predict the unpredictable.
I had only been on the interstate for five minutes when he started screaming. My heart raced and my jaw tightened. In general, I could not distinguish the gravity of the situation from his scream -- it was consistently at the there-is-a-lion-about-to-devour-me decibel and tone. Unfortunately, his brain often produced a fight or flight reaction in response to any unexpected change to his environment. I looked in the rearview mirror: Honey. On his hands and his chicken nuggets. A loss of control. A sensory nightmare.
Speaking in a low voice and breathing into my stomach, I kept my eyes on the road. “We can always solve the problem, babe.”
I sped past our normal exit, onto the next, and directly into another McDonalds’ parking lot. His screaming turned to crying as we pulled in, an auditory relief for me, as we transitioned out of my own PTSD realm, and into what my nervous system registered as within the normal distribution of 5-year-old responses. I parked the car and he ate his chicken nuggets, with no need for me to order anything additional. After a few minutes he asked,
“Mama, why didn’t I like my school?”
His question interrupted my anxiety spiral. I looked around and saw the playground outside the preschool that he had attended for less than five months before the pandemic began.
”I’m not sure honey, what do you think?”
“I don’t know.”
I ventured, gently, cautiously, that I had an idea, but that I wasn’t sure.
“You didn’t seem to like the school because they weren’t flexible there.” They had been the only local daycare willing to care for a still undiagnosed, yet clearly differently-wired, kid when we moved to our small town in Michigan, a little over a year ago.
“What does flexible mean?”
“It means that you don’t do things based on rules. That you can change your mind and your ideas, as long as you aren’t hurting yourself or anybody else.”
“They took away my cupcake.”
I was learning to place these floating, stand-alone sentences, as they sometimes came from another year, another geography, another reality. This one seemed tethered to the conversation at hand, but I needed more context.
“I wonder what happened?”
“Because I followed a kid around. Why did they do that?”
I remembered the afternoon when the school had told me disapprovingly that he was being a “bully.” They explained that he had been fixating on a single child, following him around the classroom, asking to play repeatedly. My son had stood next to me, ashamed and confused. That day I had cried most of the way to his therapy appointment.
“Some parents and teachers use punishments when they see behavior they don’t like.”
“But why?” he asked.
I reminded myself for the millionth time, that his brain did not compute the logic of rewards and punishments as a valid way to change behavior, but rather as a dangerous threat to his very existence.
“Well, because for a lot of kids, if they get punished, they stop doing something.”
“Well, it doesn’t work for me. I just get blue zone and keep doing it.”
Indeed you do, I thought. “I know, and now I understand that, but I didn’t when you were at that school.”
“You and daddy didn’t know how to be my parents.” He ventured, matter-of-factly. I smiled to myself, at his awareness, his understanding. How true it was.
“I know sweetie, but now we understand how your brain works better. It’s our job to teach your schools how it works, so that you can be safe and learn. And then when you are older, it will be your job to teach people how your brain works.”
“Mommy's don’t know how to be parents at first.”
Ain’t that the truth, I thought, as I explained.
“That’s right, we have to learn about our kids and figure out who they are and how their brains and bodies work, and sometimes it just takes a long time.”
Five and a half years, to be exact. He happily polished off his last chicken nugget and I put the car in drive. Both our heart rates had slowed. We had wrangled the scream, locked it away. And as I held my breath, he had filled its wake with words, each one poking its shy nose out of his shell, sensing whether there was enough trust to fully emerge.
And as we drove home, I realized that for the first time, perhaps ever, he was starting to make sense to me.
(Photos of Caitie's family in Holland, Michigan and Casey's family in Waterloo Recreation Area, Michigan)