LINKS
Mindful Self-Compassion Workbook
Interview with Think Inclusive Podcast
TRANSCRIPT
Danny: Hi all, and All Our Brave Hearts is back!
Tara: Yeah, we missed a week (or so) huh?
D: We were busy
T: We sure were
D: Tara, please introduce us!
T: I am happy to! So we are brother-sister duo Danny and Tara Whitty. Danny is a nonspeaking autistic author, advocate, chef, ocean enthusiast, friend... and he uses Spelling to Communicate (S2C). We refer to people who use that and similar methods as "spellers." His preferred method is to point out his letters on a laminate board with the alphabet printed on it. Sometimes he reads those out loud himself as he spells, sometimes I read for him. And for longer prepared remarks, he has a chosen text-to-speech voice.
I'm his sister, Tara, and one of his main Communication Regulation Partners, so I am essentially his communication aide. And this podcast is us sharing our vision for a better future, which is embracing interdependence and cultivating a society that's more based on compassion and kindness and shared visions for a better world.
What do you think - how did I do?
D: Super!
T: Good, thank you Danny
D: Let's get to our question!
T: I'll ask you first - haha! Give me an example of interdependence that you've noticed in your recent life.
D: Haha! I was going to make you go first!
T: I beat you to it!
D: You sure did.
T: Well, there you have it. So what's your answer?
D: Hmm... let me think. I will say that going to Oregon was so full of interdependence. Like I needed family with me for safety, but I also was proud to have you all in the audience watching me on the panel.
T: A little background: Danny was invited to present at this wonderful event with the Autism Mustang Alliance, just southeast of Portland. And I was already up in Oregon teaching a class, so my mom was originally going to bring Danny up, and then we realized that it was our sister's birthday around that time, and she loves trees, so we made a family trip of it. So yes, you did literally need at least one other family member to come for your safety on the travel to Oregon, but also, our mom and sister don't get to see you present live that often. So it was great to have them there for multiple reasons!
D: Totally. And we all were so giving and considerate of what everyone needed from the trip. So we all had a great time!
T: Absolutely Danny!
D: You?
T: Well, I'm going to also refer to our Oregon trip. So, the weather in Portland became drastically cooler right before the 3 of them flew up, and as a result, they kind of underpacked warm clothes. Danny, you were all set, but our mom and sister were pretty chilly. And the afternoon of our first full day together in town, our mom and sister were resting - our sister wasn't feeling very good because of the chilly weather - and so Danny said, "Tara, let's just go out for a walk." And as we were walking, I asked him to spell, "What, in particular, do you want to do on this walk, if anything?" and he said, very resolutely: "I want to buy warm clothes for our sister and mom."
There was luckily a Columbia Factory store nearby, and Danny selected these great fleeces and wool socks. He was very particular about the color and style, and had me model everything to make sure the size was okay. And it was clear that you felt so proud to be able to do this for people you love, and even just the way you were walking back to the Airbnb I could tell that you felt really good that you could do something to show your care. So it was just so wonderful to be able to support you in doing that very kind thing, which was very appreciated.
D: I felt so proud and I appreciate you sharing that.
T: I'm happy to share it, Dandan.
D: So let's dive in!
So here is our sort of regular Q&A Episode. I love hearing from you! So please keep sending your questions and comments. Here we go!
Q: I have also tried to find a therapist that would accept a speller/AAC user as a patient, but I haven't had any luck yet. Phone calls and emails like that take a lot of out of me, and after so many rejections, it's hard not to get demotivated.
D: This is so tricky. I wish that all nonspeaking folks had access to therapy. We all have so much trauma to process. Therapy has been so important for me. It is a huge gap right now. I hope more therapists realize that our population needs so much support for our mental health. I wish I could give better advice or a solution to this.
I have found mindfulness to be useful outside of my therapy. There are so many resources on mindfulness. I love Thich Nhat Hanh's books and videos on YouTube. My younger sister and I also do the Mindful Self-Compassion workbook, which I will link in the transcript on Substack. So these are not therapy, but could be helpful.
T: Yeah, Danny, that's a big gap. And I think the families of spellers could also do with access to therapy, as well, just to help better process everything! Anyway, the next question:
Q: I absolutely do believe physical exercise is so important in helping nonspeakers build a brain/body connection. I remember reading Ido Kedar's blog many years ago, and I just knew immediately that what he was describing was what my son was experiencing. So, I am always trying to find ways to help him move his body. He is constantly gaining strength and better motor ability. He is 11 now, and I'm always trying to find ways that are 'age appropriate', that will be engaging and build that brain/body connection. Do you have any suggestions? You may have ideas that I have overlooked.
D: I can't say anything specific without knowing more about your son. I think keeping it fun is so important. Does he show interest in particular physical activities? Even if his body can't do them now, he could work on the basic skills related to them and feel that he is working toward a larger goal. For me, surfing is my goal sport. That and Stand-Up Paddleboarding have guided my OT to develop relevant training exercises to build my skills with both. It is so much more motivating for me to have these larger goals!
If possible, working with an OT who respects spellers is a great way to go. Good OTs are like magic! Also, many spellers love dancing, swimming, and walking. Those are such popular ways to stay active!
I also know of some awesome personal trainers who work with spellers. They build strength and confidence and can recommend all sorts of exercises.
I know OTs and personal trainers are not cheap. I wish I had more accessible solutions to suggest. That said, there are so many great resources online that I am sure could help.
T: I've been so amazed by the progress you've made in your coordination and motor skills and stamina in just a few years, Danny. It's actually motivational for me, too, Danny. And I agree that a good OT is like magic.
Q: I would love to know if you've always been able to carry something over your shoulder, like the bag [she's alluding to that duffel bag you were carrying in that photo online], or if that's something your body adapted to over time? That's one example of something my son isn't able to do (yet!), so I was just curious. .
D: I am pretty coordinated in my gross motor. That is just my body. I know many of my peers have much more limited coordination and strength. So things like carrying a bag on my shoulder are simple for me. That said, I have grown so much in my physical abilities in the past three years through working with an OT. She helped me build body awareness and work up to yoga flows and lifting weights and complex jumps. And she helped me build stronger balance and coordination in ocean sports. That and practice have helped me move in ways I couldn't before.
Q: I would love for insight to comments 'others are same' or 'others feel this way' or 'others like me' - my son has mentioned feeling the ONENESS of the universe and has spoken as if there is a 'collective' awareness or consciousness - this FASCINATES me
D: This is a huge and profound topic! It is similar in many ways to Buddhist thought. Several of my speller friends have their own ideas about the universe and spirituality. Others are part of organized religions. But I think many of us do have a strong sense of connection. It might come from our hyperconnected brains or the obvious interdependence our disabilities make so necessary. But I feel we are so attuned to energies and so observant of the world. And from this, we see how it is all connected.
That is one reason I am fascinated by astrophysics. It is so complex, but we are part of it! Isn't that amazing? We are matter. And matter is neither created nor destroyed. It cycles around in diverse forms.
This was such a comfort after my dad died. He is still in this universe, just in a way that I can't fully understand yet.
I would love to talk more with spellers about this topic!
T: I would love to be in on that conversation. I have so many questions for you about how you see the world! And I wonder if that's one reason why Yayoi Kusama is one of your favorite artists. A lot of her art is centered on this idea of this oneness. The most famous is probably the bright pumpkins covered in dots - there's the idea that we're all dots. And her immersion room in the Phoenix Art Museum, where you walk into this pitch black room lined with mirrors, with these lines of little lights hanging at different lights, and they fade into different colors. And the little snippet before you enter the room is something like, "You will be obliterated into the swarm of fireflies." It was really effective, I thought - I really felt like I was just part of something bigger. Yeah. So - that was a bit of a tangent - I would really love to chat more with you and other spellers about how you see the universe.
D: I am so a fan of her art because of that oneness.
T: So I was right!
D: It happens sometimes!
T: Yes, sometimes it does happen that I am right.
D: Haha! So that is it for this episode. Can you send us off?
T: Of course! So that was another Q&A episode. We don't know yet what the next episode topic will be, but that should be coming in a couple of weeks. As always, thank you so much for being with us. Please do share this podcast widely, and we would love to hear from you! We need more questions for the next Q&A. Any comments, please like, subscribe, rate, review, etc. on whatever platform you're accessing this. And you can read the full transcript on AllOurBraveHearts.Substack.com, and you can listen on Spotify or Apple Podcasts.
Also check out our recent interview with the Think Inclusive podcast. Danny has linked this on his social media. I think Danny just did such an amazing job on that interview, as he does with most interviews. If you like our podcast, you'll find that episode - and probably that whole podcast - interesting. Anything else you want to add, mister?
D: No. Short and sweet!
T: Bye!
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