Growing Up Differently Wired
Debbie Reber and Tilt Parenting
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In 2019, I was one of a few invited speakers at a conference in Toronto.
One of the other speakers and I liked each other upon meeting. I found her engaging and fun, and her work focused on positively shifting how differently wired children get seen, understood, and supported—right up my alley.
Like this wonderful book.
Today, I’m sharing highlights from the Tilt Parenting podcast episode I was on, with links to the full transcript, show notes, and more on Debbie and her important work.
I was on episode #201 (my favorite number!)
Transcript highlights (edited for clarity, grammar, and space):
Debbie: I was wondering if you could share some of your personal story with us. Maybe even starting with when you first knew that you were experiencing things differently than other kids?
Amanda: I had these terrible feelings in my body when I was very little. I didn't know they differed from anyone else's feelings. I assumed this was what it meant to be human. But my siblings and I had to go to my father's house every other weekend, and I would have, you know, complete meltdowns.
I would throw up, or my body would vibrate, and it felt like I was dying and being pulled into this deep black hole of nothingness. And no one around me behaved this way or acted this way or seemed to feel this way. And so, over time, I realized how I responded to these things differed from how my friends or siblings reacted.
I couldn't ever have a sleepover. I couldn't have anyone sleep at my house. So, with each sort of skill introduced into life, I would slowly discover that I couldn't do things other kids could do, and I became acutely aware of that difference.
Debbie: Well, it's so fascinating to me that you had this insight or the self-awareness from a pretty early age that, you know, wait a minute, I'm experiencing this differently. Something isn't right here. And yet, you really struggled to be understood or seen by the people in your life. Can you talk about that? Because, you know, you write about it so beautifully that you wanted some external symptom to show people that what was going on internally wasn't okay.
Amanda: Yeah, I had a whole period, probably starting at around age eight, where I really needed someone to understand what was happening to me. And the only way I knew how to communicate that was to have something wrong with me.
So I would pretend that I had broken my arm, wrap it up in an ace bandage, and wear a makeshift sling or limp or squint my eyes to make it seem like I had some eye twitch. Anything for someone to recognize that something felt broken inside me.
I was externalizing the internal. It was very difficult for me to actually articulate what was happening beyond just saying, “I am scared,” or “What if you leave?” or “What if you die?”
I was saying these things, but they weren't getting through. Or, it got brushed aside as regular childhood separation anxiety when it was really severe, and it crippled my life daily; I felt it all the time. It was always inside of me. They weren’t doing anything with the words I was using, so I understood I needed to show them.
Debbie: I'm sure you know the stigma surrounding labels. And I notice a lot of reluctance among parents to get a diagnosis or a label to share with their child about what's happening. Can you talk about that a little more?
Amanda: Yeah, I mean, for me, what I would have given for someone to tell me what was happening to me; my life would be so different. Everything about my life would have changed if someone had sat me down and said, “What you feel has a name, and it’s called anxiety. It feels like this and makes you fear that…”
Many parents worry that saying, “This is what's going on with you…” will make things worse, or the child will develop some issue around that diagnosis. But really, we already know something's wrong. It's not a secret for us. So, having that label is actually helpful so that we can have a context for what's going on with us.
So, I really believe that parents should communicate with their kids about the kids themselves. Otherwise, as a child, it feels like a part of you is being withheld. And when you feel that a part of you is being withheld from you, you feel alien; it’s strange to know that maybe there's a secret about you that your parents know and your teachers and testers know, but you don't know. It makes a kid feel so strange and not human. It's a terrible, terrible feeling.
Debbie: [In your memoir] You captured what it felt like to be you as a child, which I think is such a powerful perspective. And I think your ability to convey, viscerally, what you experienced as a child to a reader is incredibly powerful. Could you talk about this crippling anxiety and panic that you were experiencing? What did that feel like?
Amanda: Sure. I felt trapped under a heavy layer of vibrating heat. And, I was separate from the world somehow. There was some danger between me and the world. Any motion, any sort of step I took, activated the start of what felt like dying. I felt like my ankles were being dragged toward a giant black tar-pond of quicksand, and I would disappear forever into nothingness. My brain felt like someone was constantly scribbling on it. There were no words, just dread and heat.
I always had pins and needles all over my body. And I felt terror all the time. Sometimes, the terror would show up in a flash, and other times, it would hang around for a few minutes. And otherwise, it would, you know, the closer it got to my separating from my mom, the worse I would get.
And it would become so debilitating that I would have to stand still and be paralyzed because, if I moved, I thought I would start dying. So, it was a very existential fear. It was very confusing to have that type of existential fear when you're little, and you can't really make sense of it. And I didn't know how to calm myself down.
The only way I knew how to calm myself down was to avoid the situation I feared. My mom acted on her natural instincts to help get me out of the things that scared me. Unfortunately, this taught me to avoid my fears, and it wasn’t until much later that I learned that doing the opposite was the right way out.
Tilt Parenting Founder & CEO Debbie Reber (MA) is a parenting activist, bestselling author, podcast host, and speaker. A certified Positive Discipline trainer and a regular contributor to Psychology Today.
Debbie’s most recent book is Differently Wired: Raising an Exceptional Child in a Conventional World. Debbie’s Tilt Parenting Podcast is the top-performing podcast for parents, caregivers, educators, and professionals raising and supporting neurodivergent children, with over 6 million downloads.
Or follow her on IG.
Until next week, I will remain...
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