Like many people, before I found out that neurodivergence is forever a part of our family, I hadn’t heard the term much and wasn’t sure to what it typically refers. I knew that autism is neurodivergence but it also includes conditions like PANS/PANDAS, ADHD, OCD, Bipolar Disorder, Dyslexia and several others. I think most of us are familiar with ADHD because it is a fairly common diagnosis and one our family has dealt with for a long time but for us, the most life-altering and challenging condition is Autism Spectrum Disorder with a Pathological Demand Avoidance Syndrome profile. Yes, that’s quite a mouthful and inspires a lot of different reactions when I inform people about it. While definitions and pamphlets can do a decent job of describing PDA, the best way to give insight into what life is truly like with PDA is to share the journey, so here goes.

When our youngest daughter, Livvy, was born, she was a gorgeous, happy baby who went on to hit all of her milestones on time. She slept like a champ (which made this tired momma very happy), ate well, laughed a lot and seemed to be thriving. Then, at about age three, we started noticing some challenging and confusing behaviors. She became aggressive and easily angered with just about everyone and was getting into some trouble at daycare/preschool. She picked fights with her older sister often and wound up physically hurting her and raged uncontrollably when corrected or disciplined. Once, she was sent home from preschool for slamming another child’s face into an outdoor grill, causing the girl’s face to bleed. Thank goodness she wasn’t seriously injured but nonetheless, it was scary. Livvy had begun throwing things, hitting, kicking, screaming at the top of her lungs and just seemed to be completely out of control. Even adults were afraid to babysit her for fear that they’d have to correct her and she’d fly into a rage and throw something at them.

It wasn’t just rage, though. There were things that confused us about her reactions to different situations. For instance, she couldn’t stand for anyone to sing songs in the car, as if it hurt her head. Also, no one could even gently tease her about anything because she couldn’t seem to differentiate playful teasing from harmful attacks and sarcasm confused her. Then I began to notice how obsessive she was about role play. Kids naturally love to pretend and enjoy role play but this was something different. It was constant and at bed time, she wouldn’t come out of her role (she loved kittens and seemed to believe that’s what she was) and insisted I play my part every night, without fail or there would be a meltdown. Almost overnight, Livvy developed a fear of crowds and had extreme fear around new people or even family she hadn’t seen in a while. At the same time, she developed extreme aversions to certain smells and things like buttons and tags on her clothing that bothered her intensely. Sometimes we’d plan to eat at a particular restaurant but wound up having to leave because of a scent that made her gag and overwhelmed her. There were so many more oddities that I never connected until later and never even considered autism because what I knew of it at that time didn’t sound like our daughter.

By Kindergarten, getting Livvy ready for school became a nightmare. Every morning, no matter what incentives we tried or how many consequences we doled out, she used every tool in her arsenal to delay or get out of going to school nearly every day and it almost always turned into a battle of wills and ended in meltdowns for all of us. By first grade, she was refusing school often and it was becoming an issue. There were many times I’d finally get Livvy to the school and she’d refuse to get out of the car. We’d sit in the parking lot for over an hour while I tried everything to convince her to go but often times, it ended with her in a fit of rage, screaming, hitting me and kicking me. Teachers had been seeing difficult behaviors for a while but didn’t understand the magnitude of what we were going through at home. No one did.

Needless to say, it was an incredibly stressful and painful time for our whole family and we had no answers or hope in sight. We’d looked at so many possibilities as explanations for what was happening but nothing made sense. We thought maybe she’d been molested by someone she knew but eventually determined that wasn’t the case after doing our own investigations and talking with Livvy a lot. There were no indications whatsoever that molestation was a possibility.

At that point, I started to blame myself because I didn’t know who else to blame. Granted, I had less patience and was harder on my kids back then but had I done something so terrible that it resulted in this? I had no other explanations and we’d tried every parenting approach out there to try to correct the behaviors. We tried more consequences, harsher consequences, positive reinforcement, incentives, etc. You name it, we attempted it and all of it only made her worse. It felt like we were living a nightmare and our family was falling apart. There were even a handful of times during this period when Livvy felt so ashamed of herself at the end of a meltdown that she told me she didn’t want to live anymore. She was six years old at the time and had no idea what suicide was but knew she didn’t want to be alive. You just can’t imagine what those words will do to you as a mother. I’d always suffered from anxiety but at that point, it was off the charts and I became very depressed. I’d lost all hope and couldn’t see a path forward.

To be continued next Tuesday. Please join me back here for more of our story!