jk! Back for an Epilogue

This is the song that never ends

Yes it goes on and on, my friends

Some people started singing it

Not knowing what is was

And they'll continue singing it forever just because

This is the song that never ends

Yes it goes on and on, my friends...

Burnout/Recovery/Stability - it's a cycle. A spiral. It never ends. Did you know this? I had heard the concept discussed in the PDA community. I had read about it. But I had not fully comprehended what it might mean for my family because the reality of subsequent burnouts had not yet reared its ugly head (we were barely catching our breath after the first one, the apex of which happened in late summer 2021). But now it has. In full force.

Earlier this spring, at age nine, E entered autistic burnout for a second time. Burnout number two, and he's not even ten years old. Can you imagine the intensity of this child's life experience? To not even be in the double digits and have faced not one but two substantial periods where you felt so overwhelmed and so unsafe that you could no longer access basic needs like safety, connection, movement, sleep, food, and hygiene? That's where we are. Again. The Burnout/Recovery/Stability cycle is a part of PDA. Burnout is a part of my child’s disability. I have learned that the hard way over the last few months.

When I wrote my last post, I was holding on to the last vestiges of a season of stability. Parenting a child with high support needs still presented daily challenges, but it was not so all encompassing that I could not also meet some needs of my own. It was a season that allowed me to sleep at night, go out of town for a weekend, go to yoga on Saturday mornings, meet friends for dinner or coffee or brunch, take B to horseback riding lessons and parent and tot classes, start an agile learning community, perform in a community theatre production, remind my body how good it feels to sing and dance and be with others who feel the same. When I write all that out now, it feels like a lifetime ago. I haven't been able to safely leave the house alone for 9 weeks. I've barely been able to shower. Or cook. Or clean. Or garden. Or play guitar, or practice piano, or write, or go on a walk. Or basically do anything that shifts my focus away from E because he is so often in intense distress. My entire existence is taken up by coregulating my child’s nervous system, or resting my own.

We've been in crisis for over two months. What triggered this second burnout, you might ask? Well, devastatingly for me, the clearest trigger was me being gone several evenings a week for rehearsals. I know rationally that E entering burnout was not my fault, but it’s really hard to remind myself of that sometimes. He's also growing and may need a higher dosage of meds, or a new medicine altogether, or there could be early puberty hormonal changes affecting his brain chemistry. There are likely a myriad of intersecting causes for this behavioural health crisis, but the main one is simply the fact that he has sensitive neuroception. E is constantly perceiving threat from stimuli that others perceive as neutral, nervous system activation accumulates over time, eventually it will become too much and he will need a dedicated period of rest and recovery to rebalance his systems. Therefore, seasons of burnout are a part of PDA. (And the fact that I wanted to be in a musical was the last straw.)

The play I did this winter was such a life-giving experience for me that a few weeks after we closed, I auditioned for another production, a hilarious, fun, and touching show called Kinky Boots. I got a part. I even got a solo. I learned the songs and choreography and remembered why I adore musical theatre. I got to know the cast and crew and was so incredibly grateful to be a part of exactly the type of community I needed to find - diverse and inclusive and quirky and just wonderful. I knew it would be hard for the family, especially E, for me to be absent three to four nights a week (with a bigger role in this production I would be called even more often for rehearsal than in the play I did previously), but I trusted the kids and my husband to be able to handle it. It would be hard, yes, and I deserve life, too.

Well, it turns out they could not handle it. 

The weeks passed and every time I left for rehearsal it was becoming more and more difficult to do so safely. It got to the point where Jarrod was having to physically restrain E just so I could get out the door, and by then E was so activated he was in full on fight-or-flight, with his fight response fixated on Jarrod with an obsessive ferocity. We worked on supporting Jarrod with resources so he could handle E's big feelings, like switching the days our caregiver was at our house so she was always there on evenings when I was out of the house. I made sure the kids had eaten before I left. We didn't worry about putting B to bed until I got home. I got in touch with E's medical team to tweak dosages and trial new meds to provide him more internal support. We offered E the option of coming with me to watch rehearsals, or dropping him off at a friend’s house to play while I was gone. None of it was working. We were seeing levels of aggression that we hadn't experienced in years, directed at me when it was time to leave, and at Jarrod while I was gone. The physical altercations just kept escalating.

On the night I finally had to give up trying to make it work, five weeks into the rehearsal process and just three weeks away from opening night, E had hidden my keys, phone, and wallet so I couldn't leave, armed himself with a hammer, and blocked the door to the garage. That is how unsafe he felt by me leaving the house, and taking my coregulatory presence with me.

So, I quit. Me being out of the house so often had clearly crossed the threshold from hard into too hard and E's behaviour was communicating severe distress. But our lives didn't get easier after I left the show. After so much trauma, E now had a razor thin window of tolerance. Anything and everything was hard. He stopped being able to take his melatonin at night and his sleep started cycling again in a Non-24 pattern, which we were just barely able to reign back in to a delayed sleep phase. He's a burgeoning foodie and chef, but he was often too dysregulated to eat and would end up in meltdown multiple times a day over meals, refusing plate after plate of his usually safe foods, screaming at me, "Waaa! I don't want that. Mama get me FOOD!!" He's athletic and able-bodied, but suddenly I had to carry or pull or roll him from room to room because he couldn't move his own body. I had to carry him to the car and buckle his seatbelt. I had to physically help him dress. When he wanted to shower, I had to turn on the water, get his towel, and walk him to and from the bathroom. We lowered every demand possible and reverted to saying nothing about tasks like tooth brushing. He hasn't brushed in months. This is a child with above average knowledge of computers, but when he wanted to watch YouTube I had to bring him his laptop, turn it on, enter the password, plug in his headphones, and put them on his head. He lost interest in our favourite video games and his dopamine-bound brain felt ill at ease without a special interest to keep his brain active; he was depressed and listless much of the time, needing me close for coregulation, but then hitting me in distress two seconds later, and then laughing about it. And then asking me for a snack. He was telling me several times a day, “I hate everything. Me upset. Why Mommy no do anything?!?!!!!” But none of it was personal. His nervous system was so activated he was no longer in conscious control of his behaviour or his words. He is a kid whose vocabulary when he is regulated is far beyond his years, a poet and a storyteller extraordinaire, but he communicated with me mostly in baby talk. He would also hiss and growl and snarl in his dysregulation and use every cuss word under the sun. He was biting, kicking, scratching, hitting, pulling hair, throwing things, flipping furniture, and ripping things off walls, multiple times a day. We removed anything that might be picked up to use as a weapon in the moment, but there was always something else to grab that we had never thought of. In the wake of the trauma of feeling abandoned and unsafe when I kept leaving for rehearsal, and being restrained by Jarrod, his relationship with Jarrod deteriorated and he could no longer allow his dad to stand in as caregiver in my stead, ever. Jarrod couldn't get him food, play with him, or take him on outings. He no longer felt safe with his father. Over the next few weeks it got to the point where Jarrod's mere presence in the house was too activating for E and resulted in immediate violence. We didn't want either of them to be seriously injured, so we considered Jarrod moving out for a period of time, maybe renting an apartment or visiting his parents for a while. But with E needing so much of my attention, Jarrod was a huge source of support for me at home, taking over almost all house care tasks and being with B, because E had to be my priority, so we decided he would stay at our house, but basically only come home when Elias was ready to sleep. Interestingly, E still needs Jarrod at home for bedtime. He says he doesn't feel safe without Daddy there, and falling asleep is probably the most vulnerable state a person can be in, so this detail gave me hope that there is room for repair between them one day.

As for me, while my thinking brain knows we are all older and wiser and better equipped to face the challenges of burnout a second time, my own trauma is constantly telling me I am alone, helpless, trapped, and in despair. PTSD makes me dissociate and go into freeze when there is violence in our house, but there is literally no one to pass the baton to when things get really hard and I need a break. My body is breaking down again. The auditory hallucinations returned, and I feel physically ill from anxiety every day. My systems are working on overdrive. Jarrod and I are not robots, we aren't amazing superhero parents, we are human beings with sensitive nervous systems of our own and we can be pushed beyond our capacity as well. In fact, we are operating beyond our capacity on a daily basis. It's what makes us snap at each other or the kids and feel blame and resentment and rage boil up inside at our own losses of autonomy. It is so incredibly difficult to remind ourselves that it won’t always be this hard. That we are not alone. That we do have support. That we have accumulated resources and skills to support ourselves and each other. That we got through this once before, we will again (and again and again, if need be).

However, having had the chance to rest and heal somewhat while we were stable, my body knows what it feels like to feel safe, and that makes this burnout very different for me. I am so much more self-aware this time around and I have done so much inner work that I can fully recognize how awful I feel. I am more present. I know what is happening and why. I have language for our experience. I'm no longer numb, so I can very clearly read the signals that my nervous system is activated alongside E's and it does not feel good to be back here. And underneath it all I am so incredibly angry at the very unfair truth that trying to meet my own needs caused my family to suffer to an untenable extent.

So where does that leave us now? Well, as I said, we do have support. We have familial support, we have (some) financial support, we have a handful of therapists and doctors who listen and do their best to help, we have a caregiver two afternoons a week who helps with dishes and laundry and plays with the kids to lighten my load, I have a network of friends around the country who parent in similar situations as we do everyday and we have very active group chats that provide an essential lifeline for me, we have in-person friends who care and understand and are incredibly flexible about getting the kids together on the days when it works for E. In between the meltdowns, he's just a kid who wants to play with his friends and explore the world. On the good days, we've gone swimming, had playdates, gone on bike rides and adventures, gone camping, gone shopping for summer clothes, updated his bedroom decor, cooked together, watched movies, played games, gone out to eat - just normal family things. Indeed, the good times make the hard times seem unreal. 

That's a big difference from burnout one to burnout two; when E was six and at the height of burnout, he could barely leave his room for several months. The only activities he could handle were YouTube and Minecraft. This time, there is an almost manic quality to the highs and lows of E's mood; when he is within his window of tolerance, he is raring to go do all the things, deciding he wants to mountain bike or rock climb, but when he is operating outside his capacity, we are hiding the knives and calling the mobile mental health crisis unit to try and keep everyone safe. 

In burnout one, we had just learned about PDA and were advocating for an autism evaluation. The system failed us many times on that journey. In burnout two, we know E is autistic and we are advocating for the right type of support for him and our family, yet once again the system is failing us. 

Because of his age, his autism diagnosis, and his default fight response, even though he is clearly struggling with mental health, and the crisis center at local psychiatric hospital assessed that he does indeed qualify for inpatient treatment, the one facility that could potentially take him declined the referral from the crisis center. Apparently they are not equipped to handle his behaviour. So, even if we decided we needed that level of care (which we fully recognize could be more traumatic than therapeutic in our situation) there is no inpatient psychiatric bed available in our region. Instead, we are working with outpatient treatment, and were given our first appointment five weeks away. It's not enough.

So, in the midst of dealing with my own trauma and trying to keep my family safe, I am also researching and coordinating potential hospitals, specialists, autism-specific residential placements, in-home therapies, etc etc. What we discovered the last time we went through all this is that every therapeutic environment was too dysregulating for E for the therapy to be worthwhile. Instead, we had to rely on years of building trust and connection through a low demand parenting lens for us to get to a point where E could once again access medicine and basic needs. Accommodating for PDA allowed him to heal. He and I have that trust still, but everything that used to work to keep him stable isn't working anymore. I am willing to explore every option. He is suffering. Our entire family is suffering. 

I wanted to write this epilogue because I felt like leaving on such a positive (or even neutral) note as I did before is misleading. Someone in a similar situation may find this blog and think I eventually had it all figured out. I didn't. I don't. I have had to tell myself and my child that burnout is a part of his disability. It is something he will learn to manage over the course of his lifetime, and we are building his toolbox to be able to do so every day. E’s twice exceptional identity, autistic and gifted, means he may very well experience astonishing highs, and devastating lows. It's a lot for a 9-year-old to digest. When he tells me, peeking out from his sleeping bag safe space in the middle of the living room floor, “I hate everything. Me upset.”  All I can really do is say, “I know. This is so hard. I'm here.”

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