Trust will be the foundation on which the PDA child will eventually override her need for control during every moment of the day. It is the premise on which you can introduce opportunities for windows of flexibility and which will allow her to reduce the frequency, duration, and intensity of panic attacks. I believe in my heart of hearts that trust is the fertile soil from which your child will eventually blossom.
Now that my son Cooper and I trust each other – a process that took at least a year – I am able to put down small, yet important boundaries that I never could before. For example, boundaries such as not slapping my body as he runs by for sensory input or that he wait for one minute while I feed myself before we start playing. This is not perfect, and his abilities vary day to day according to his anxiety level. However, we have made headway, and it has been based on our trusting relationship.
Now when I use boundaries – judiciously and carefully – he can often tolerate it for two reasons: his overall anxiety is low enough so that he isn't constantly on the edge of a meltdown and, second, he cognitively understands that a single limit does not indicate that I am taking away control indefinitely. He knows that if I set a boundary -- while always measuring his level of tolerance -- it is not a signal that we are in any way returning to a model of parenting premised on authority and compliance. He trusts that this is true, after a year and a half of experiencing it.
Cooper has not always trusted me. After his crisis at the age of four-and-a-half, he and I had to slowly and carefully rebuild our ruptured relationship. After a too-long period when his father and I used behavioral models in an attempt to control his behavior, he began to fear me. He wouldn't look me in the eyes when I spoke to him, he would often run impulsively from me when I approached, and immediately respond with screams when I would ask him to do something. I believe that by using these behavioral models, I was unknowingly punishing his disability, rather than helping him to improve his behavior. The use of timeouts when he disobeyed, which included physically isolating him in moments of distress, eventually traumatized him. Now, however, at this stage of his life, I have become his primary respite, his refuge, and his safe space. While other people in his life can push him a little more with limits and expectations (e.g. his teacher at school), I protect this trusting role with him.
Building trust is not easy. It is a process that requires starting on a premise of compassion for your child. This premise can feel especially daunting when you have spent months or years of your collective life in conflict, power struggles, or enduring physically violent, scary, or intensely disruptive behavior. But it is absolutely key to begin the healing process for your child, yourself, and your relationship.
If you have already begun the "clearing the brush" process through lowering demands and giving control and autonomy, you have already started to lay the groundwork for trust. As your child witnesses your willingness to permit her more autonomy and – to the extent feasible – a commitment to not forcing her to engage in the activities that set off her fight or flight response, she will begin to trust that you are starting to truly “see” her and understand her needs.
As you navigate implementing these big-picture, structural changes in the household -- a process that takes time and trial and error -- you can also take smaller, more immediate actions to build trust day-to-day. From my perspective, some good starting points for intentionally building trust with your PDA child are the following: Creating Safe Spaces, Entering into her World, Using Humor and Playful Communication, Modeling, and Parenting Non-Violently.
Below I briefly describe examples of these starting points, but each one could merit its own blog post. Think of it as a way to spark ideas about what might work in your home and what you can start doing now, rather than a comprehensive explanation.
Create Safe Spaces
A few years ago, when my son started exhibiting what looked like extreme “defiance,” “oppositional behavior,” and what we perceived as aggressive and violent responses to our limits, we doubled down on compliance in the household. Based on the book 1-2-3 Magic, we used timeouts to "extinguish" Cooper's unwanted behavior and to force him to comply with basic requests like cleaning up toys, eating food at the table, and walking up the stairs for bedtime.
It is heartbreaking for me to write this section, because in retrospect, I realize how much this approach confused him, scared him, and broke down the relationships in the family. As recommended by the books and videos, we would actually hold the door shut while he screamed for two minutes, because he would try to break out of the room and tear things off the walls. When we opened the door, he would not be able to calm down, he would run from us, kick if we came near, and scream. Sometimes the next two hours would consist of him screaming, running from us, and pure agony for everyone involved. In these moments there was nothing we could do to soothe him -- it was like he "wasn't there."
I share this not to dramatize an anecdote, but rather to illustrate how damaging this approach was for a child who had a disability we did not know about. Not only did this strategy not work to improve his behavior, it led to a crisis in which I nearly admitted him to a psychiatric hospital and in which I had to quit my job.
In the aftermath of the crisis, one of the first things we did as a family – long before we knew about PDA, but after we abandoned behavioral models -- was to create safe spaces in the home for Cooper. This effort, along with an explicit apology and promise that we would never close him in a room again, was the first drop in our empty trust bucket. We created a “calm corner” with blankets and pacifiers that he helped design by including colored pencils, stickers, and blank paper taped on the wall. He now uses his upper bunk in his room -- or the bottom bunk closed off with sheets for walls -- as his safe space. He knows he can always go here and get on his ipad, use his pacifiers, snuggle his stuffed doggy, and maybe have a crunchy snack or a popsicle.
It is important for your child to know that they have a safe space to go to when they are escalating, or when they need to have a meltdown safely. This does not mean that they should ever be forced to go to that room, but rather that there is a space where they can be alone or be accompanied through their most difficult moments. In the beginning – before my son would let me get near him during a meltdown – I would often sit right outside the doorway, just so he knew he was accompanied, even if he wasn't ready for me to be more physically proximate.
Enter into Her World
Beginning to establish trust and to eventually “relearn” your child, requires entering into her world, as awkward as it may feel at first. You might still be holding onto the expectation that your child should be adapting to your world. You may also feel resistance to the idea that you change your behaviors, especially if you were raised by parents who set the ground rules or who have raised neurotypical children that simply adjusted to the family rhythms, activities, and recreational opportunities. I was a compliant, cheerful, follow-all-the-rules soul myself, so I understand that response.
One of the first steps we took with Cooper was to let go of any planned activities, and to observe what he naturally wanted to engage with. In the beginning of this process, there really wasn’t much he was interested in or enjoyed. It seemed as if the only thing he “liked” were screens. So we started with screens. He would sit on the couch, and I would sit next to him, and sort of watch what he was watching. Once he noticed I was attempting to share attention, when I would look away from the screen, he would say, “Mama, are you watching? Look!” It was an early indicator that he wanted to share something with me.
Another thing my son and I did in the beginning was to engage in pure sensory play. At the time, there was not a lot of verbal back and forth, imagination or role playing, because his play skills were quite delayed. So I simply let him jump on the bed while I threw stuffed animals at him for an hour each day. Eventually, little tiny ideas emerged in the safety of that room, like the idea that he was a ninja or a superhero. (For more on his evolution with imaginary play, see this post).
The process of entering into your child’s world will be different for each family and each child, depending on her age, interests, strengths and weaknesses. It will also depend on how much trust has already been established and how much she is ready to “let you in.” Entering into her world might be as simple as spending an hour sitting next to your child as she plays on her ipad. If she voluntarily speaks to you, you can direct your attention to her using declarative language like, “Wow, I notice you like that Mario character!” and see how she responds. (A declarative statement is a bid for communication that is not a demand, because you are sharing your perspective, instead of using imperatives or questions to illicit her response).
I like to think of this type of interaction as engaging in “parallel play” or creating a shared space on her terms, while providing your non-judgmental presence. In general, there is absolutely no “right” or “wrong” way to do this. What matters most is your intention and presence, as the rest will eventually follow as your relearn your child.
Use Humor and Playful Communication
To establish trust, it is helpful to use humor, playfulness, and goofiness, no matter how awkward it seems. Again, I know this might be hard to muster if you have a child who appears on the surface as controlling, defiant, and explosive. One of the hardest things to do is let down your guard, lessen your anger, and try and laugh, when you have a pain in your chest, simply because you have been steeling yourself against the very experience of living with a PDA child. But it is worth trying, because it really softens everyone’s hearts, including your own.
One of the things I noticed when Cooper and I began our healing process together was that he loved seeing me make mistakes – like when I tripped, bumped into something, or spilled water. Until then, I had been trying to be a mother who didn’t show weakness, but rather knew the answers, created a stable home environment, and was the “authority” figure, strong and steady. However, when I started letting my guard down, Cooper would break out of his furrowed brow and just belly laugh at my human foibles.
I soon realized how much he needed to see that he wasn’t the only one in the family with challenges. I started to play up these imperfections, by making fun of myself and using silly facial expressions and exaggerated, fun tones of voice. Against my very nature, I started using a lot of bathroom humor, as well, which just cracks him up.
Now humor is a key tool that we use to communicate, as well as to de-escalate meltdowns. It is a way of depersonalizing an explosive panic attack, and shifting the blame to an “annoying” inanimate object. For example, when he starts screaming over a Lego he can’t put together or because he fell out of his chair (due to poor postural control and body awareness), I blame a Lego or the chair that he fell out of - “Man, that silly Lego! Who on earth designed it this way so that it was so hard to put together?” Or, “That stupid chair, I can’t believe it threw you on your booty!”
These are ways that you can lighten the moment and take the burden of shame and embarrassment off your child. Shame in the aftermath of a meltdown – even if it seems more like anger on the surface -- can sometimes make it harder to get back "in" with your child so she can come down from a heightened state of agitation. Humor is one bridge back to safety and acceptance for the PDA child.
Modeling
Another key tool we use with Cooper in our household to build trust is modeling the behavior we want to see in him, and doing so without demanding it of him explicitly or implicitly. This can be challenging, but it is doable, and can pay unexpected dividends.
Take Cooper's eating challenges, for example. He only eats a few things – many of which are processed and full of sugar. Yet, on a daily basis he observes me and his father buying, cooking, and consuming healthy, organic food. We talk about the vegetables we are cooking, we model eating as a family every night at dinner after the baby goes to bed, even if Cooper doesn’t join us or consume the food we are eating. (By the way, this took us over a year to establish, because he couldn’t tolerate our divided attention at first, so please note it is a slow process).
Now, the more Cooper observes us, the more he displays interest in understanding the logic behind eating healthy food and understanding the social rhythms. He fully understands the importance of family dinners, without the pressure of engaging in all the demands presented by them. Perhaps someday he will figure out his own strategies to override his sensory resistance and demand avoidance to eat a more healthy diet or to eat with friends or family. All we can do is equip him with all the information and tools at our disposal and lessen the anxiety around the experience of eating.
Finally, to get yourself in the right mindset for effective modeling, I recommend a quick reframe that I use, and that's telling yourself that all the day-to-day things your child refuses to do are actually "things that she will learn about from from your modeling, even if she doesn’t do them right now."
Parenting Non-Violently
I'm not going to lie to you, this next strategy is a tough one to execute. Engaging non-violently when my son is throwing things, screaming, and kicking me fiercely is one of the hardest thing I have ever had to do. And I wrote my doctoral dissertation on peace and peacebuilding.
Concretely, what parenting non-violently has most commonly meant for our family is that when our child screams in our faces, rather than telling him to stop screaming or raising our own voices, we say, "Thank you for telling me, what can I do to help you?”
This is not easy to do. But, even when I feel my own fight or flight response getting triggered, I try to focus on the fact that he is using verbal communication -- even if it is in a tone that feels aggressive -- because him doing so is an improvement over using actual aggression and violence to communicate his needs and internal experience. I also try to remember to benchmark behavior against my own child's progress, rather than holding onto expectations for a neurotypical child.
The ability to respond with non-violence is premised on having the inner resources to draw on so that you can confront this difficult challenge. Responding non-violently means you must also have space and respite from your PDA child. True breaks where you can recuperate and bolster your strength before you go “back into the trenches,” are from my perspective non-negotiable. As a dear colleague of mine used to remind me at work, "You can't pour water from an empty cup." The same is true with family responsibilities.
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Remember, parenting in the ways described above is not the same as how some of your friends may be able to parent by hanging out with their kids around, while also checking their text messages, throwing in a load of laundry, or cooking after setting up activities to entertain their kids. Rather, this form of parenting is a deliberate, attentive, challenging practice of presence that requires enormous patience, strength, and focus. You will need extra rest and extra help, in whatever way you can find it. But at the very least, you will be able to rest in the knowledge that you are taking on the monumental task of supporting and accommodating a child with a disability in a moment when our society and the medical establishment haven't yet caught up to the reality you are living. This makes it an exhausting DIY endeavor, but it also makes you an unsung hero.