leo in bloom magazine

When my body is all dysregulated and my mind is wild with compulsions, I feel almost removed from my body. I can only watch in horror as my body runs amok. Shouting and screeching continuously, stomping and slamming, bullying my family with my compulsive behaviors, sending my dogs into hiding. I am a monster in those moments.  

One of my biggest fears is losing my family. Yet it is my actions that push them into stress and exhaustion and burnout. It is almost like my inner saboteur is testing them. As if I can prove that I don’t deserve them. Or to prove that they couldn’t truly love me.  

This is my cruel and so vicious loop. My anxieties and whatever is wrong with my body combine to make me act crazy. Then I see how it stresses my family, and my anxieties further explode: What if I drive my family away with my dysregulation? And then my dysregulation gets worse. 

I am just coming out of a terrible time of extended dysregulation, which really pushed my family to the edge. Tara, especially, was already pretty burned out, and our mom was so stressed with work. It was three weeks of intense meltdowns and sleepless nights, with only a brief reprieve of a couple of days last week. I could see my family – dogs included – fading into burnout.  

Then I had a revelatory session with my therapist, Debbie. She reminded me and Tara that I am an individual with high support needs, like many nonspeaking autistic folks. And that I have a need for and right to support outside of my family. That struggling to do it all ourselves is not sustainable, nor fair to any of us. That it is critically important that I have my own autonomy beyond my family. Otherwise, I am in a very vulnerable position and my family is put under too much pressure.  

She also acknowledged the reality that finding out-of-family support is highly challenging, and out of reach for many. This is a huge problem for our community. Luckily, the support available to me through the Regional Center in California makes this a possibility for me, though it is still a challenge to find good care.  

This revelation took such a weight off of our hearts. We need to figure out how to move forward, but I feel much more confident that I can find a way to feel more secure in my support. And Tara feels less guilty about wanting to have a bit more of her own life. And I feel less guilty about needing so much support! 

It is my hope that more resources become available to families like mine. This side of our reality is not often openly discussed, but it is so crucial. I am so lucky in my loving family, and they show me that they treasure me. And we just need more support.