"This is Not the Life I Wanted"

The other day, I watched my children play happily together in the backyard, digging a giant hole in the dirt. They were so engaged in this simple, beautiful pursuit that I had time to weed and water the garden uninterrupted, and even sit down on the back porch afterwards.

It was while I sat and observed them, enjoying the rare but amazing experience of "sittervising," as Susie Allison calls it, that I reflected on just how special the moment was. They were playing together, digging with grown up garden tools, everyone was safe, we were outside, and I had been able to work on a project of my own. During the years of E's burnout crisis, none of those things would have been possible - and certainly not at the same time!

As I watched them, I thought back to something I had written a year ago, describing a very different backyard scene, and I realized how far we have come. Later on, I went looking for that piece of writing and this is what I found.

June 23, 2022

This is not the life I wanted.

There are moments when I have this awful, shameful thought. When the chronic stress of the last few years catches up to me and my own nervous system can't handle parenting this child for one more second, but I have to because I am his mother, and I think to myself, this is not the life I wanted. This is not what I envisioned motherhood to be.

I never envisioned a life where stepping outside to the backyard could be enough to trigger my child's sensitive threat response into fight-or-flight (in our case, fight).

Let me describe a scene for you you. On this glorious June morning, my toddler and I are puttering in the backyard, tending the garden. Moments ago, my oldest was happily building Lego in his bedroom and the household was calm, but his need for my co-regulatory presence led him in search of me, and now he's standing at the backdoor, fire in his eyes.

"Get back inside," he demands, carefully articulating every word around the thumb he is still sucking at age 7 (an oral stim, I have come to realize.)

"It's such a beautiful morning," I venture. "Some of the zucchini are ripe!"

"Get back inside," he repeats, his voice hard as stone. He has an anxiety driven need to be in control, a subtype of autism called Pathological Demand Avoidance (PDA). His behaviour is an autonomic nervous system response to a perceived loss of autonomy. I know all this, and more, about his disability, but it doesn't always make his panic attacks easier to manage, and it makes balancing the many needs of everyone in our family immensely challenging.

In an instant, he leaps swiftly over the stony ground on bare feet to where his sister and I stand by the garden bed. Then, all of a sudden, thwack, thwack, thwack, thwack. Four times he whacks me, back and forth on the upper arms, with his lovey named Bobo - it's a stuffed elephant head attached to a small blankie, the trunk worn away from years of E seeking reassurance from it's texture. The hits from Bobo sting no more than a snap from a dishtowel, but it still hurts. My flesh, my pride, my heart. I worry he'll go for his sister next, so I tell my two year old to take the zucchini we picked back inside to Daddy, getting her to safety.

I turn my attention back to my son. "Fresh air and sunshine are a really important part of what makes my body feel healthy and happy. We could spend some time out here together." 

He's sulking now, sitting on the side of the garden bed, banging the paving stones with a garden tool he just picked up.

He meets my eyes. "Get back inside, now, or I'll hit you." 

Bobo has been tucked away and he now wields the hand fork. Ok. So this is the type of morning we are having. We've been here before. Many times.

He stands up, stares me down, weapon in hand, and thrashes it around a few times as he steps towards me threatenly.

Would he really hit me with a hand fork? It's possible. He thrashes towards me with the fork, but I make a grab for it and pry the metal out of his hand, my adult size and strength still giving me the upper hand, for now. I keep the tool out of reach and hold tight to his arm as I turn back towards the house. The gardening will have to wait, obviously.

"I really wanted to be outside this morning, but I can see it's too hard for you. Let's head back in."

I keep holding him close while I go to the utility room and put the tool away out of reach. Then, wrenching away, he picks up a pair of his sister's shoes and hurls them at me with a gutteral scream. The shoes hit me.

"Stop!!" I yell in exasperation. "What do you want?!!"

It's a ridiculous question that he can't be expected to answer, especially when dysregulated, and I know the answer already, but I still yell it out of sheer exhaustion.

The answer is he needs my undivided attention to feel safe. He felt anxious when he realized I was outside and he was beginning to panic because I didn't come in immediately as he demanded. He has a nervous system disability. However, my own nervous system is traumatized after years of dealing with these aggressive meltdowns almost every day and sometimes I just can't handle it. My husband comes over, realizing I need a moment, and leads E away. I take a few deep breaths by the washing machine and wonder how I will make through the day. It's barely 9am.

My husband has given the toddler her tablet and is talking to E. I come over and he suggests I go with E to his room for some one-on-one time. Honestly, one-on one-time with the child who just tried to attack me is not what I want, but it's what he needs. My own needs will have to be met in creative ways another time.

We build Lego together for a little while and chat. He is soon happy and regulated. I see into his heartspace again. When the toddler calls for me, I leave E, settle B with a snack, and tell my husband I need a break before he leaves for work. E is back to YouTube and Lego and seems ok for now. I close the bedroom door and crawl under the covers for 15 minutes, wishing it could be 15 days.

This is not the life I wanted.

But, it is the one I have. My husband leaves for work and I get out of bed. I fill snack and drink requests for everyone again. I let them stay on screens so I can breathe and process (we let go of screentime limits long ago) and make a coffee. I start writing this.

In a few minutes, I will set the playdough out at the kitchen table and invite the children to come play. E will announce he wants to build a marble run instead, which is fine (classic PDA drive for autonomy!). We play, we have lunch, we research the beginnings of the universe and what happened before the big bang (E's wonderings of the day) and we move forward. We do eventually get to be outside all together without incident. The stress of the morning fades away. Until the next time. There will always be a next time. Even with support, even with knowledge, even with all the patience and compassion in the world, PDA is a nervous system disability that will be with our family for life.

When E is regulated, he is delightful - brilliant, creative, funny, affectionate, adventurous, perceptive, determined, and so much more. And when he's not, well, parenting him is harder than I ever imagined.

--

When I first reread what I wrote last June, it was too much. The sensations of E' burnout period flooded back and overwhelmed my system. I had a panic attack. I felt ill, hot, shaky. I went to the bedroom, found my husband, and cried years and years' worth of tears.

I didn't expect the memories to effect me like that. I had been in a good place, enjoying a peaceful moment, watching the children play. My intention in finding that piece of writing was positive; I had wanted to celebrate how far we have all come in one year. Instead C-PTSD took control and it suddenly felt like no time had passed at all. In so many ways, although I have come far in my healing, there is a lot that still needs to be processed. Because of that, the dread, the hurt, the fear, the confusion, the hypervigilance, the desperation, the guilt, the shame, the exhaustion - I felt it acutely all over again. Honestly, it unsettled me for a few days.

Feeling out of control of my own body is the thing that bothers me the most when I feel the panic of PTSD rise. Intellectually, I know the response of a panic attack is neurobiological; it's not my fault. It's nothing to feel bad about. As a friend reminded me this week, the brain is an organ just like any other in our body and sometimes it malfunctions; mental ill health, really, is just like a cough. It's just a cough. And it can heal the same way, too.

If I could go back in time, what would I tell 2022 Dara? I would tell her that, in a year, everything will be a little bit better. Not perfect, but better. A year from now, E will be stable. The accomodations you are making at home will continue to allow his nervous system to heal and he will move out of burnout.

The trust and connection between you will continue to grow. He will become regulated enough to agree to try medication, and that internal support will be transformative. There will less violence. Almost none, in fact. There will be more peace. Stay steady. It will get better.