Updated Therapy Review: The Safe and Sound Protocol (SSP)
Updated: Apr 24, 2021
Before I learned my son was PDA, I spent a lot of time writing and thinking about sensory issues because that was the primary "difference" we had noticed in my son. It was what we were talking about, learning about, and working on in our family. During this time period, I started a secret blog that I didn't share with almost anyone because deep inside me I knew that there was something in my writing that wasn't fully making sense. As I wrote more about Sensory Processing Disorder (SPD), parsed the research and processed it on the page, there was something that just didn't add up. This makes sense now, because something else (a lot else!) was going on in Cooper's brain-wiring: Pathological Demand Avoidance and Autism.
Although this original blog is now defunct, there were a few nuggets that I want to salvage and share. Specifically, I wanted to post a piece I wrote about a therapy we did twice with my son Cooper, called the "Safe and Sound Protocol." Recently, a few parents with PDA children have expressed interest in this therapeutic protocol, so I thought I would share this piece more broadly here. From my perspective, the SSP therapy has the potential to be very applicable and relevant to the PDA child because it is designed to work on the vagus nerve and treat trauma. The PDA brain is wired as if the child has experienced trauma, with a very sensitive fight or flight response, which is exactly what the SSP is designed to help with.
Additionally, I wanted to share this piece in its original form to illustrate the evoluation of my own thinking and understanding of my son. For example, you will see that I mention "defiant" behavior a few times, a term I no longer see as an accurate depiction of what is going on. Now, I view outward behaviors like defiance as an anxiety-driven response, the symptom of a fight or flight moment. However, I want other parents to see that nobody has all the answers, and that for all of us parents -- especially neurotypical parents parenting neurodiverse children -- it can be a long, confusing, arduous process simply to understand what is going on. My experience has been no different.
Finally, I know from my research that there is quite a bit of controversy in the Autistic advocate space about therapy in general, likely stemming from decades of Applied Behvioral Analysis (ABA) practice and research that have largely excluded Autistic input and voices. Historically the research using this data, as well as the therapy itself, has been conducted without Autistic consent.
I am aware that many adult Autistics who have gone through this type of therapy view it as harmful, and even consider it a human rights abuse. Even non-behavioral-based therapy for an Autistic child can be controversial within this community, because it can be viewed as an effort to fundamentally change who a child naturally is -- their Autistic identity, their culture, their humanity.
(I also understand that most parents who sent their Autistic children to ABA -- or send them now -- do so without realizing the Autistic perspective or that there are even alternatives, such as play-based approaches. Caitie and I aren't here to pass judgement on other parents, simply to share our perspectives in ways that we hope will be helpful, while sharing the information we have, as we learn it).
In general, when I do therapy with my son, I find it helpful to use the following question to guide my decisions: "How can I support who Cooper is as a human, so that he can achieve the goals he wants, have more fun, and enjoy his life?" It can also be helpful to use some of the fundamental questions that underly non-violent communication, outlined in two books: "Non-Violent Communication: a Language of Life" and "Speak Peace in a World of Conflict" by Marshall Rosenberg.
You can ask, What is alive in my child? How can we make their life more wonderful?
From my perspective, and I believe Cooper's, I am not trying to extinguish him or his behaviors. Rather, my husband and I hope to support him in lowering his overall anxiety, access a more consistent state of regulation, and support his sensory integration and social communication so that he can accomplish the things he wants, like playing with friends, eating more than five foods, and inventing Bakugans with names he can spell without my help.
Well, without further ado, below is the original review of the SSP therapy, with an Epilogue and Caveats at the bottom from a place of PDA awaweness.
We hope it is helpful.
Original Title: "You are Safe and Sound" (written February 25th, 2020)
"When we cannot rely on our body to signal safety or warning and instead are chronically overwhelmed by physical stirring, we lose the capacity to feel at home in our own skin, and by extension, the world" (pp. 307).
The single most devastating aspect of my son's sensory disorder, even more than his eating challenges, has been his inability to calm himself and feel comfortable in his own body. Since he was born, Cooper's baseline has been one of not being at ease. His first four months of life, he did not sleep or stop crying unless he was breastfeeding, being vigorously swung back and forth, or wrapped marsupial-like against my chest and moving. Even as a baby and a toddler, he couldn't settle to nap and was dysregulated (fussing, crying, lurching his body towards or away from things) for most of his waking hours.
This dysregulation often presented in needing to be held and carried -- even at the age of four-and-a-half -- or being in constant motion. He would spend his days seeking the sensation of his body against other humans, walls, objects, or toys in a disorganized way, in order to feel the contours of his kinetic self. My husband and I used to lament that from the moment he was born, it has appeared that our son did not feel at home in the world. We would say things like, "He just has a hard time being here on earth" or "He hasn't really been happy or comfortable since he left your/my womb".
In addition to our son's baseline of not being still, calm, and at home in his body, I believe he also experienced the accumulative effects of sensory processing disorder as a bodily trauma. By four-and-a-half-years old, he had developed a full-blown fight or flight response to the seemingly simple things in his daily life: sitting at a table and eating, transitioning from one room to the next, having a parent divide attention between him and another task. Subconsciously and instinctively, Cooper did not feel viscerally safe in his body. And because of his lack of -- what the professionals call -- an"optimal arousal state" (i.e. not freaking out) his learning slowed and communication withered.
So how do you "treat" or teach a child who does not feel safe in their body as a baseline? It turns out there are some ways, and our Michigan occupational therapist recommended one of them a few months after we arrived here. She offered to oversee our use of a therapeutic listening program called the "Safe and Sound" protocol, which had produced good results in some of her other clients. I was really excited to try it, because I had been reading about Polyvagal theory and trauma for myself, but could see how this lens could apply to my son as well.
What is the Safe and Sound Protocol?
The Safe and Sound Protocol is a listening therapy that helps a child learn the feeling of safety, to engage socially and in an attuned way, and to help them move more easily out of the a panic response that would produce fight, flight, or freeze. There are special headphones that use bone and air conduction to transmit Disney songs that are specially gated and redesigned to communicate to the brain that a child is "safe". Apparently, the auditory system is used as a portal to the vagus nerve, which controls our ability to feel safe in our body. There is more research on SSP provided here.
Side note: As a researcher, I am trained to be pretty skeptical of any research showing the effectiveness of a product or protocol whose patent the researcher owns or which is highlighted by a company that can profit from people using the technology. This set-up can produce a biased incentive to demonstrate that something works in order to earn academic accolades and for people to benefit monetarily. So I went into this whole listening exercise with a healthy dose of skepticism, yet with the knowledge that it is a relatively new technology (2017), so there probably isn't a lot of unbiased evidence out there. I will say, that as a mother of a child who has Sensory Processing Disorder -- which some people don't "believe" exists and isn't in the Diagnostic Statistical Manual yet -- I have learned to be a little skeptical of my own skepticism. Also, I figured, Playing quietly with mom and dad while listening to Disney music? Can't hurt, might help. (Spoiler alert: It helped.)
And so we were off. I began preparing for the five consecutive days of play about two weeks before Christmas.
Cooper's therapist reviewed with me the three largest challenges to successful implementation: constraints on my son's behavior, controlled environment, and the potential "side effects."
Constraints on Listener's Behavior
One of the things I was most worried about was successfully preventing my son from doing the things he shouldn't while listening (raise his heart rate, eat, take off the headphones, refuse to participate) and making sure he did the things he should (engage in quiet, attuned play that wasn't movement-based). As an exasperated mother of a sensory-seeking and defiant four-year-old boy with SPD, corralling behaviors is not something that makes me feel particularly competent. In fact, one of the primary reasons we were doing this protocol was because my son did not appear able to sit calmly and play in a focused way. But I understood the reasoning - the music needed to get into his ears and raising his heart rate through jumping, crashing or running could simulate feeling overwhelmed or upset.
So I did what I always do when I feel nervous - I over-prepared. With Cooper, I know that novelty can go a long way, so I made sure to prepare something fun and new to engage him each day. For example, one day I had wooden Christmas ornaments to paint, while another day, I presented him with a stack of puppy and Christmas cookie magazines to make collages. I let him take his new paints and mix colors to his heart's content. In another nearby area, I set up different floor activities each day - puzzles, Legos, a marble tower, etc. A third area was set up for pure sensory play with glittery goo and essential oils in citrus scents that Cooper finds calming. For the fourth and fifth day, when my husband was home for the weekend, I took my one-year-old out of the house, and they made Christmas cookie dough and frosting, and then spent the next day decorating them. (You may be noticing a theme here).
To my delight and surprise, Cooper was fully engaged playing with me during almost the entire hour on the first day, and didn't ask to take off the headphones until the last few minutes. The other two days I did the protocol with him, we spent 45 minutes at the table, engaged in the artistic play. I made sure to smile at him, bring my finger gently to my lips when he started to chat, and I would calmly help him slow down when he started to dance and wiggle to the different Disney songs he recognized. Each day, I made sure to demonstrate that I was "with him" and loving whatever he was doing, by making eye contact, rubbing his back a little, smiling at him, using facial expressions of delight, nodding, and doing the activity in a way that mirrored his interest.
Because the key idea of the Safe and Sound Protocol was to create a context and experience where my son could experience visceral feelings of safety, social engagement, and attunement, I had to control the environment in my home where we did the listening. Our therapist told us that there should be no unexpected interruptions -- cell phone dings, postman stopping at the door, visitors, or even sibling wandering through -- because this could cause distress in the child. While we were doing the listening, I realized why this part was so important, because it seemed as if my son had taken off a layer of armor and was unusually receptive to me and his surroundings, so much so that negative and positive stimuli could just flow right in. He was like a permeable little being during that hour.
For example, on the first day while listening, our neighbor's car rolled up our shared driveway when we were sitting at the kitchen table painting wooden cars. Suddenly, Cooper's eyes and ears locked on the movement outside the window, and he kept asking, "Who is that mama? Who is in the driveway?" as if it was the first time he had realized that we had neighbors. These were neighbors who he had already met and liked, but he still seemed distressed by the "mystery" car. I broke the "no talking" rule to assure him that we were safe, he was fine and that our neighbor's car was nothing to worry about.
Our therapist had let me know that some parents had observed a burst of energy and/or an emotional release in their child after finishing the SSP protocol each day and she suggested getting Cooper outside after listening was finished.
So... if there were ever any doubt as to whether or not these gated Disney songs were re-wiring something in Cooper's brain, the aftermath of each session fully remedied my skepticism. After each session Cooper would have a huge burst of energy and emotional release like nothing we had ever observed in him in his four-and-a-half years. The first evening, when he is usually tucked into bed promptly at 7:00pm, I found myself running up and down our block with Cooper as he zoomed ahead of me on his bike (which he had been refusing to ride up until that moment). We did this dozens of times, speeding past the twinkling Christmas lights and our new neighbors' houses. Then we rolled around on the front lawn doing gymnastics moves and Cooper's demonstrated his new karate sequence and taught me his new skills. Then to get the rest of his wiggles out, we skipped forward and back down the block, on one foot and then the other until we were both exhausted. I didn't care at all that my clothes were covered in dirt or that I was most certainly making a weird impression on the neighbors because I was so thrilled with his communication and his sudden ability to teach me something using multi-step commands.
That night, when he finally climbed into bed a good hour after his normal bedtime, we could hear him crying upstairs, still awake. My husband went up to check on him, and Cooper spontaneously expressed that he was "sad about his friends from his old school" that he missed them, and missed our old house. It was like the listening program had unlocked the floodgates, and all of a sudden there was an emotional and somatic release. This was absolutely thrilling for us, because in the past he had primarily expressed rage and defiance, without us understanding what underlying emotions or experiences were driving this behavioral expression.
The next night at bedtime when Cooper felt "wiggly," we did heavy work by filling a plastic laundry basket with books, which he pushed back and forth across our hardwood floor. He declared, "This is too easy for me!" with a degree of joy and pride, that again, we had never seen in our son. We added more books, and he pushed, without extinguishing the surge of energy until he had gone back and forth dozens of times. The next night was the same - we ran up and down the block, rode his bike until the chain fell off, rolled on the semi-frozen earth doing super hero moves, pushed books in a laundry basket, and then he processed with dad how much he missed his friends. And then he slept upstairs, while downstairs my husband and I marveled at the transformation that seemed to be taking place.
After the five days, we noticed that our son was calmer, more self-regulated, less rigid in his thinking, and able to transition between activities without a meltdown. He communicated more complex ideas and emotions, and was willing to do so. He seemed noticeably more comfortable in his body -- not 100%, mind you -- but more so than ever before.
And if you want observable indicators of the before and after, I can give you a few.
He is now willing to sit, regulated, and color without anyone sitting at the table next to him. As a reference point, when we started occupational therapy last summer, he refused to color, draw, or write, and it would take 45 minutes of sensory input to get his body ready to color or trace for five minutes with the occupational therapist and me egging him on and participating. Now, he will do it on his own and wants to.
He started napping at preschool, which is not something he has done for over a year. Now, when I pick him up at his school, he greets me with flushed cheeks from snoozing on his little cot next to his new friends.
He has started to try new foods, and doesn't have a knee-jerk, panicked reaction when the food is set down in front of him. He has nibbled every so slightly on a sugar snap pea, a blackberry, and a strawberry.
He no longer seems like he only has two speeds - manic or asleep. Sometimes I catch him just being still. Looking out the window or playing with a toy on his own for a few minutes. It is still hard for me to believe that he is finally, albeit slowly, mastering these skills that I firmly believed would forever elude him.
He has started using more complex sentences, and can recount a story when asked "how was school today?", rather than just racing towards the Ipad to disappear behind a screen that distracts him from the world's sensory input.
He is crying more and screaming less.
But my favorite indicator of all is his new use of the phrase, "Fine!", thrown at me and his father like he is an exasperated teenager with uncool parents. Now, in response to requests that would previously trigger a screaming fit -- Hang up your coat, Wash your hands, Brush your teeth -- he lodges a "Fine!" at us, and then does what he is asked. In fact, this "Fine!" has became my siren song of regulation. Because he is using words, instead of thrown objects or kicking legs to express himself. And in our world, this signals that we are finally moving across an invisible threshold: out of the land of panic and reactivity, into the beautiful, run-of-the-mill, totally typical land of annoying five-year-old behavior. And we are so incredibly grateful.
Epilogue and Caveats
The pandemic started less than a month after I wrote this original piece and many things have happened since - both of my sons were pulled out of child-care and school and into quarantine with me, full time. We learned about PDA and Cooper was diagnosed as Autistic.
Unfortunately, the effects of the SSP wore off over time and Cooper, in some ways, "returned" to a near constant state of dysregulation, which has improved over time with other PDA-friendly strategies. Despite the "wearing off," I still found the experience incredibly important for both him and me for two reasons. First, Cooper learned what it feels like in his body -- albeit temporarily -- to experience a calm state of arousal and safety. Second, I learned who he is beneath the behavior and what he is capable of, if I can accommodate him, support him, and help him through his demand avoidant moments. For him it has become a baseline we always work towards, for me it was a glimpse of his inner light shining forth unfettered for a brief moment in time. Now, for as long as it takes, I will do whatever I can to get him back there thorughout his life.
Although we repeated the SSP again in April of 2020, I was simply too frazzled and stressed to truly "signal" safety and attunement during the five days we did the protocol. As a result, there was less of an effect the second time, and any differences I witnessed were more pronounced in Cooper's communication and executive functioning (ability to organize his throughts in a logical way and carry out ideas), rather than his behavior. For example, the week after doing the protocol, Cooper created an idea for an Easter carnival and set up "stations" and activities for the whole family in our basement. Creativity was released, and so was his ability to implement, but his self-regulation was still inconsistent and volatile, which was likely a result of the overall stressed energy in the household. Additionally, this was during a time when I still didn't know how to accommodate him or how to work through a PDA lens.
A few months after we did the SSP for the second time, I called the Integrated Listening System company to talk about the tool with a certified therapist. She explained it was common for the effects to be different depending on context and how many times the child has done it, with the largest effect usually witnessed after the first go. She also shared that she had worked with families that had sometimes done as many as nine sessions and that each time was like "pulling back the layer of an onion." Some layers were simply thicker than others.
Now that we know about PDA, I believe we will try the therapeutic protocol again, through a more flexible lens. I plan to give my son more control over the times of the day he does it and collaborate with him ahead of time to come up with fun and novel things to do for the hour we spend together.
Sometimes I still notice that Cooper gravitates towards doing art activities with me, like we did during the initial session. If it is just the two of us, with no distractions, he often remains calm and attuned in a surprising way. I like to think it is an "after effect" of those first moments before the pandemic began when we just sat and existed together, to the tune of music, no words, both of us safe and sound.