Labels Schmabels: A Mom’s Take On Her Daughter’s Humanity

Wisdom Shared with Carole Blueweiss

Ariana Speyer is an experienced editor, writer, and copywriter turned Anat Baniel Method NeuroMovement® (ABMN®) practitioner. She lives in New York City with her husband Pat and their nine-year-old daughter, Calliope. In this episode, Ariana shares about life with Calliope, who has a rare genetic syndrome called Sturge Weber Syndrome, and how ABMN® has made a difference in their health and well-being. Ariana underscores that people are more multidimensional than their diagnosis, and reminds us how isolating it can be to live outside of society’s so-called norms. When you break it all down, we’re all seeking to belong and to be part of a welcoming community. Learn more about Ariana and her work at arianaspeyer.com.

You are welcome to share the wisdom from this episode. Please be sure to credit: “_Ep. 10, Ariana Speyer, Courtesy of Wisdom Shared Podcast with Carole Blueweiss._”

In my conversation with Ariana, we covered a lot of ground. Here are some of the highlights.

1. Parenting a child with special needs in some ways prepared Ariana and her husband for the COVID-19 pandemic, “Because risk-benefit analysis is something we've been very used to doing since my daughter was very little, and that's something people are grappling with a lot of: Is this worth it? Does this make sense? Is the benefit worth the risk? You know, all of those questions we have to ask ourselves now all the time we were already pretty used to asking ourselves, like, is it worth it to have an MRI?”
2. We discuss labels, and how the bureaucratic drive to quantify every special needs child is an ongoing challenge for parents. “If I were to talk about her as a human, as somebody that I love, I would say she's silly. She loves to dance. She's nine years old. She enjoys all kinds of music and hanging out with her grandparents and watching movies. If I was going to talk about her labels, I would say that she's non-ambulatory, non-verbal, and she has multiple disabilities.”
3. Bedside manner isn’t something every doctor is trained in, but it can make all the difference. “Ideally, a doctor will come with a certain amount of positivity and kind of connectedness. That makes you feel safe and like you're working together collaboratively to figure out the next best thing.”
4. The Anat Baniel Method, or ABM Method, provided a transformational, movement-based way of working with Calliope and a new career and community for Ariana. “From the very beginning, I just felt a visceral response to the ABM approach, which is so gentle. And so hard to describe—giving Calliope movement experiences that she wouldn't have on her own in a way that would develop her own potential.”
5. In ABM, resting is part of learning. “Rest is so essential to how ABM operates in every movement lesson. There's so much resting and that's a time when you can kind of notice differences and noticing differences in our work is the fundamental unit of learning. So having intensive practice time, and then resting in between to see what happens with how the system takes that information in is an interesting model. And it's been shown to work pretty powerfully.”
6. It’s hard not to compare your neurodiverse child’s development to “typical” children. “Every birthday was incredibly painful and the uncertainty felt more overwhelming than it does now. There's something to be said just for the passage of time and it not being so fresh, but…there's always going to be grief.”
7. Having a community of other special needs parents can be really good medicine. “The support of that community is essential for mitigating or at least bonding over all of these challenges so that they feel less isolating and also less scary.”
8. I always ask parents who I interview how they take care of themselves. For Ariana, it’s a combination: “ABM movement lessons saved my sanity and my body during the pandemic. I've become very dependent on them in a way that I hadn't anticipated would be possible. Going for walks has been another thing that I've found incredibly therapeutic. And then other than that, you know, trashy TV, ice cream, and beer.”

TERMS, TREATMENT MODALITIES, and RESOURCES in this EPISODE

ARIANA SPEYER
https://www.arianaspeyer.com

ANAT BANIEL AND NEUROMOVEMENT®
https://www.anatbanielmethod.com

EMDR
https://www.emdr.com

EQUINE THERAPY
https://www.goodtherapy.org/learn-about-therapy/types/equine-assisted-therapy
FRUIT-EZE
https://www.fruiteze.com
MUSIC THERAPY
https://www.musictherapy.org
SUZANNE MORRIS, Speech Therapist, Virginia
https://www.new-vis.com

STURGE-WEBER SYNDROME
https://rarediseases.info.nih.gov/diseases/7706/sturge-weber-syndrome
THE WORLD’S BIGGEST PIANO MAT by SMART PLANET
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The Wisdom Shared Team

• Audio Engineering by Steve Heatherington of Good Podcasting Works
• Co-Producer and Marketing Coordinator: Kayla Nelson
• Production Assistant: Becki Leigh