There is No One Coming to Save Our Family

While we have slowly built a support team of a few professionals who "get it," they play a necessary but peripheral role in our story. Most of them haven't helped E directly, instead they are people I have sought out to support my own mental health so that I can continue to show up for my child, and myself. I had to learn the hard way that what I was initially hoping for, a well-informed professional who shared our values to swoop in, take control, and tell me exactly what to do to help my son, did not exist. Even though we now had a diagnosis for E, which did open doors for identity, understanding, and support, the most notable help for our family would have to continue to come from within.

After E was diagnosed as autistic, I was optimistic about having referrals to several therapies that would now be covered by our insurance. Our developmental behavioural pediatrician had recommended occupational therapy to help with sensory integration and emotional regulation, a speech and language pathologist to assess for differences with pragmatic language that may be hidden behind E's exceptional expressive language capabilities, and a trauma-responsive behaviour analyst to help with aggression. I had heard from other families of PDAers that it is hard to find the right fit for therapeutic support because PDA is such a unique expression of autism; nonetheless, I booked consultations with each of the professionals we were referred to, at least to say we had tried. Unfortunately, each appointment was more disastrous than the last.

I contacted the providers in advance to share information about PDA and E's needs, but even with their best preparations, being in a therapeutic environment activated E's nervous system to unsafe levels; we're talking chair flipping, toy throwing, therapist-attacking levels of dysregulation, the likes of which we hadn't seen in months at home. His nervous system shifted instantly back into fight-or-flight with every appointment. Indeed, he was so activated with the therapists that he couldn't complete any of their assessments and we never did get a clear picture of his needs (other than, obviously, the need for regulation). The therapists handled his dysregulation with varying degrees of finesse, the OT being the most promising (she quickly pivoted from attempting any formal activities and we spend the time walking and exploring the different rooms of the clinic to keep E as regulated as possible, though by the end he was still thrashing in my arms asking to leave, which we did). By the end of our round of consultations, E was adamant that he would never see another therapist ever again. Honestly, I didn't blame him.

Still, I was disappointed we didn't find the right support, and I was frustrated with the system. These therapists were the people who were supposed to be able to help us, but we couldn't access their help without putting E into severe meltdown and putting everyone's safety at risk. What we truly needed, which is not covered by insurance, was full-time, trauma-informed in-home caregiving support. We still had our nanny a few days a week and we loved her, but that was as much as we could afford, and it wasn't enough. Additionally, while I was on my quest to find the right therapy, everything at home became harder again because the demands of these appointments narrowed E's window of tolerance for the demands of daily life. No therapy was going to help if it activated E's nervous system to unsafe levels. That was the opposite of what we were trying to achieve. So, despite my best efforts to seek support, neither OT, speech, nor ABA was the right fit (add those to list of things we had already tried in previous years including play therapy and equine therapy - both of which were private pay). The only thing that had truly made a difference were the accommodations we were making at home, so I decided to let go of the search for a therapist and instead put my energy back into our home life.

During this period, we were also trying to find a low demand approach to medication so E's nervous system could have internal as well as external support. We did our best to explain that he didn't need medication for being autistic or PDA; diagnostic labels described how his brain was wired differently, but those parts of him never needed to be "fixed." Instead, we explained the medicine was necessary to rebalance the chemicals in his brain that had become unbalanced by the years of undue stress his system had been under before we knew how to accommodate his unique wiring. We explained that my husband and I both took similar medicines to help our own mental health. We modeled taking pills daily and were open about why and how they helped us feel better. We told him that research shows the best treatment to improve mental health is a combination of therapy and medication; since he couldn't do therapy, we strongly suggested he try medication. It was our job to keep everyone in our family safe, and we believed medication would help with that. We couldn't force it down his throat, obviously, and his palate was too sensitive (and his perception of our energy too precise!) for us to be able to hide the medication in food or drink. So, we did what we could to educate him and we shared our opinions, but ultimately, whether or not to take it had to be his decision. That was a very big decision for us to leave in the hands of a 7-year-old. He did truly try, but the longest he was able to take his meds regularly was for two weeks, during which time we did see his systems stabilize, especially his mood and sleep, but the demand soon became too much. Every attempt to encourage medication eventually ended in unsafe meltdowns. As E once adroitly asserted, "The medicine is supposed to help me be less upset, but having to take it is actually making me more upset than anything else, so I don't think it's doing what it's supposed to be doing!!" Of course, he was right. Eventually, after six months of of trial and error (mostly error!), I finally told him that I agreed medicine was not helping, so I would drop it. Like my search for a therapist, trying to get him to take medication was only making him more activated. It was too hard for him, so I let it go.

Encouragingly, through spring and summer 2022 we were seeing improvements overall; E could go weeks between meltdowns, and we noticed that he was better able to access basic needs. These indicators told us that he was indeed in recovery. Even though his progress may have been augmented by medication and/or therapy (had he been able to safely access either), it was remarkable to witness that his body was stabilizing itself, in his own way, on his own time.

Still, meltdowns are never fully unavoidable because nervous system activation is cumulative over time, and a sensitive threat response is the nature of PDA. We knew E's window of tolerance was increasing so there were instances when I would experiment with holding a boundary that would have previously been too hard for him to comply with; we were coming to a point where we could not put E's needs at the forefront forever, the rest of the family had needs, too. For example, B and I needed to be able to enjoy fresh air in our backyard; sometimes E was happily engaged in another activity and was fine while we played outside, sometimes he even joined us, but other times knowing that I would be outside when he was inside was too hard and he would become unsafe. On those days, I had to drop the demand in the moment, come inside, and find another way to meet my own and B's need for outside time. Because E's response to the occasional increased demand varied day by day and depended on his overall level nervous system activation, I never knew what kind of a day it would be. If I deemed it necessary to hold a boundary for the emotional or physical health of someone in our family, I never knew if gently expanding his window of tolerance was going to end up just fine, or if someone was going to be hurt. When it was not a good day, I was threatened with garden tools, had shoes and wooden blocks thrown at me, received bitemarks that broke the skin, and, in one terrible accident, a dysregulated E happened to kick me in the face at the exact moment I was taking a sip from my stainless steel water bottle and I broke three teeth.

We weren't seeing his fight response be triggered nearly as often as before we learned about PDA, but I was still being hurt from time to time and my own nervous system was still on high alert because of the unpredictability. I had completed training in non-violent de-escalation, an important accommodation for E since I knew meltdowns were out of his control and not a representation of the feelings in his heartspace, and they would always happen occasionally. But, I'm only human, and the level of intense coregulation required for successful de-escalation takes patience and compassion that, honestly, I was running out of the resources to provide.

After one particularly difficult panic attack over the summer, my husband told our son that E might not be able to live with us anymore if he couldn't be safe. I would personally never have said that to my child, but my husband did have a point. Where was the line? When would we stop putting E's needs ahead of my own health and safety? Pondering the gravity of this question, I asked in one of my parent support chats led by Journeys with PDA if anyone had ever had to consider in-patient treatment for their child. It was a very difficult question to even have to ask, but it was one I felt I had to explore the options for, since E could not access therapy or medication while living at home, and his fight response threatened the safety of our family, and my own wellbeing. The Journeys with PDA team suggested that my husband and I create a safety plan for when E's fight response was too intense, tell the whole family about the plan, and be very clear about in what type of situation we would use the plan so that everyone could be safe and get help. It was an excellent suggestion. I researched all the options in our city for crisis care. I learned that there is a mobile unit connected with a local mental health hospital that offers 24/7 mobile support for individuals in crisis; although they don't see children in their hospital on a general basis, they would respond to a crisis call about a child and come to our home, or we could bring E to their emergency room. So, this was our plan if he became unsafe. In all the years we had been talking to doctors and therapists about our struggle with aggression, never once had anyone mentioned the mentioned the mobile mental health unit as an option for us, or suggested a safety plan, but it felt good to have one now, even if it was too little too late; of course, once we had a plan in place, E's recovery came to such a stable place that we never had to use it.

By the end of summer 2022, we were confident that E was out of burnout. He began showering, changing his clothes, washing his hands, and brushing his teeth again. He asked us to cut his hair regularly. He started joining us for family meals at the table. He spent more time with the family in our shared living spaces, seeking out connection and conversation. His toileting issues (he had suffered from encopresis for a few years) had faded. He asked to see friends and have playdates. His interests were broadening beyond only Minecraft and he felt comfortable enough to be curious about new video games, new board games, new books, new places, new friends. None of these basic needs had been directly addressed with any "strategy," but he was finally able to access hygiene, food, toileting, movement, and connection because he intrinsically felt the desire to do so. And, importantly, he felt safe enough in his body not to perceive basic needs as a demand. Moreover, our home was a safer and more calm place. He and B could play together without any concern of serious injury. I hadn't been hurt in months. We all enjoyed being out in the world again and E would often suggest an outing like a library visit, a favourite playground, a nature walk, a visit to the trampoline park or indoor play place or the science museum. He went to a concert with my husband. We went to a fancy Diwali party at the house of family friends. He went to birthday parties. He didn't do these things every day, and he rarely did them when someone else suggested or expected it, but it was clear that the outside world was no longer a source of complete overwhelm. He felt safe enough in his body to be a part of the world again in a way that worked for him.

E had made it through burnout. Without medication. Without therapy. Without much professional help at all. It was educators and advocates in the PDA space, especially other mothers, who I had learned the most from. I learned how to accommodate my child's nervous system disability and guide him out of burnout. I knew it was possible because other families had shared their stories. Recovery was a slow and non-linear process. It took a full year for E, and accommodating his threat response while also balancing the needs of everyone else in the family continues to be a daily practice. But we did it. Our family got through years of crisis and our son became well. We did it.

In my next post, I will focus on my experience with complex PTSD from parenting. As I have learned is a trend with the lead parent of a PDAer, as E recovered, I fell apart. That's a story for another day!

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