Happy Earth Day! I am so eager to share my love and wonder for our amazing planet!
A big part of my journey over the past two years has been getting to know Mother Ocean more deeply. But even before that, I have always found solace in nature. And many of my peers in the Spellerverse do, as well. I am so in awe of the beauty and connections and ephemerality and yet endurance of nature.
And I am in awe of the connection my heart feels to it. I am a part of nature, as are all of you. We cannot save nature if we do not save our humanity. The same systems of thinking and working that most hurt nature hurt us too; commodification, disconnection, and lack of mindfulness.
I am so wanting to elaborate more, but I am so low in energy this week. I am so feeling gratitude for this wonderful world, and the opportunities I have had to get to know it. And gratitude for those working earnestly to save it.
My mom and I had a huge breakthrough today in our Spelling to Communicate partnership! It has been a long journey, even though I absolutely love her and want nothing more than to be able to communicate fluently with her. Communication is a complex and mysterious phenomenon in many ways, and I don’t even fully understand why some people are easier to spell with than others. It relates to trust, confidence, and a certain chemistry that my brain somehow picks up.
I think with my sisters, I have a close and strong connection, but not the same sort of pressure to make them proud. And sibling ties are not as loaded as parent-child ties. My mom has shown me so much love and care in my life, but she is still an authority figure. As she should be. But I wonder if spelling with parents is a bit more hard because of this.
Also, she is not a native English speaker, though she is fluent. She has told me that this makes her lose confidence in her ability to follow my words. And that nervous energy throws me off, too.
She grew so disappointed in herself as we kept being stuck in our spelling. She seemed to feel like she didn’t deserve to spend time with me. Our relationship grew even stronger when she remembered she doesn’t need to be fluent with me to have meaningful experiences together. She dove into finding documentaries and books we could enjoy together, and she and I started my Japanese lessons, where she felt absolutely confident on the letterboard.
So I think this helped us cultivate our communication mojo, so that when we had a session today with Dawnmarie at Transcending Apraxia to nudge our fluency forward, we absolutely kicked butt! Dawnmarie is so amazing and guided my mom so expertly, and my mom was so able to take that guidance and run with it. The most helpful tip was for my mom to reframe her anxiety into curious excitement. It was so amazing to see the difference it made to our spelling dynamic!
I wanted to share this because I am so proud, but also because I know of other parents who are also struggling like my mom was. Remember that we still love you and that your company and interactions with us are so meaningful even without fluency. It is not a reflection of your love or our love when it is tough to communicate.
Though my older sister is my main CRP and a hero to me, I will always appreciate the absolute love and devotion my mom has shown throughout my life. I am so thrilled to be closer to communicating fluently with my most precious person!
Today is my 2nd anniversary of being fluent with Tara! And I want to mark it by sharing an important shift in how I view myself.
As many apraxic folks do, I have long struggled with my body. I came to view it as an unruly opponent, an obstacle to all I wanted to do. I felt trapped as it reacted to anxiety and stress, a passively afraid mind in a disruptive body.
But after several months of working on my mind and motor, through therapy, occupational therapy, mindfulness practice, and trying so many new things with my sisters and friends, I started to notice a shift in how I feel about my body. I felt really proud of it! I saw that it can do a lot if taught the right way. And I wanted to be kind and loving with it, to take care of it and appreciate it.
It is not easy to take care of my body with my compulsions, especially with food. But I am trying to work on that by setting myself up for success through asking my family to assist me in healthier habits and practices, like no tortilla chips at Mexican restaurants, cutting my meal into portions and putting part of it in a takeout container at the start of a meal out, not baking as often at home, etc. And I asked them and my support team to help me build an exercise routine, and to help me practice motor skills that are tough for me.
All of this has boosted my confidence, in my body, my mind, and my sense of agency. I know I can do so much more for me than I ever suspected, and that my disability is not as limiting as I had assumed. I know I will always struggle at times, but I feel more empowered in that struggle. I also know that many of my peers face more significant motor challenges, and I am not broadly representative of nonspeaking autistics in this regard. But I am so hoping that my shift in perspective is helpful to someone out there.
Here are photos of me working to love my body. And yes, that includes the occasional cheeky pastry on a lovely outing 😉
I just had the most amazing few days with the community behind Teva Community! We worked with several awesome volunteers who shared so much energy to renovate cabins for our camp. Everyone helped in their own way – clearing debris, organizing food, building and installing the interiors! I was a bit sad my body doesn’t let me do physically tough tasks for long, but I was happy to sit and hang out with my speller friends!
This was a tiring but fulfilling trip. It feels so momentous to be a part of this exciting community for people like me and my peers! I hope many more initiatives like this come in the near future. It gives us and our families so much hope for our futures, and expands our view for what is possible in our lifetimes!
I felt so loved and supported by this group, and I am excited to see how this community grows.
Happy spring to you! At least for Northern Hemisphere folks! I have been having the most full and joyful couple of weeks. It feels like my body is so aligned with my mind, and that is so rare – but it has felt so smooth for many days! And my heart feels so resilient and strong and yet light! I am feeling so present in the moment and so connected to eons.
This is ephemeral like so much else. Dysregulation will come again. But this bliss will also return one day.
This past few days have been extra special. It was St. Patrick’s Day and then St. Frank’s Day – my dad’s birthday! It is an important day of remembrance for our family, and has been full of sadness among the cherished memories. But this year, my cousin Pam and her husband Mike happened to be visiting! My dad must have arranged it. It is the first time I have seen them where I am able to communicate fluently with them. And it is so fantastic to be able to chat with family like that! It makes me feel more connected to my dad’s side of the family, and that means the world to me.
And my friend Shay is here today, and his energy is golden and makes me feel hopeful. And I am so full of memories from the weekend, showing my cousins around the beach and Balboa Park with my sisters, and enjoying lively and delicious meals cooked by my mom at home.
This is a bit of a rambling post, but I wanted to share a snapshot of the gloriously good times. I am so lucky to experience times like this. And I feel more free in the long process of grieving my dad, from having such a wonderful experience on his birthday this year. And I feel so proud to be able to show more of myself to my cousins!
I taught my first class today! Wow it was amazing! I am floating with joy and pride. Absolutely so grateful for the opportunity and support that make it possible.
This is the poetry class for spellers hosted by Transcending Apraxia and co-taught by Brian Laidlaw. I had long wanted to start a community of speller poets in San Diego, and this class was my scheme to get it started! And I was so nervous and excited, and on the edge of dysregulation earlier. But as soon as I saw that friends from the speller poetry scene were among the students, I felt so relieved and comfortable and confident. And I was so happy to see new faces, too! And not just San Diego, but all over the US!
The energy was so warm and enthusiastic, and the discussions were so fascinating and fun. And the poetry created and shared was so beautiful! I am so looking forward to the next three sessions! Now, Tara and I are celebrating at Panama 66.
I wrote my first resume the other day! It meant so very much to me, and it was an immensely profound moment of reflection. As someone who didn’t have access to communication until my thirties, I had no documented official achievements. No diplomas, no certificates, no published anything. And until a couple of years ago, I had no hope of having such accomplishments on record.
So to see my very own resume take shape was astounding! Wow. It was so amazing to read through all that I have done in less than two years! My eyes couldn’t believe it! My heart felt so buoyant. I thought back to my hopeless times, and wished that I could go back to hug and reassure past me that this would happen one day.
I know that our worth isn’t truly linked to our resumes. And I know my most meaningful achievements are not listed on my resume. But it is a representation of all that I can now do. And it makes me feel so moved and proud and so hopeful for my future.
And I want to highlight that this was only possible because Tara dedicated so much to supporting me. And my family and support team are so important to all that I have done in these two years. I am so grateful I can bloom now with their help!
Happy Valentine’s Day! I love you all, and want to share this message of love. You can watch the video and/or read the transcript below. We talk about appreciating all forms of love, how Spelling allows me to share more love with my loved ones, and my hopes for a romantic relationship one day.
Your Friend,
Danny
TRANSCRIPT
T: Hi Danny!
D: Hi Tara and Friends!
T: Hi friends! You might notice at the end of sentences, Danny is saying “awesome exclamation points” and/or “done and done” and those are just little loops that he’s doing these days in case you’re wondering what he’s saying
D: I am so enthusiastic in my compulsions!
T: Yes you are enthusiastic in your compulsions, as in many other areas in your life. So, is there anything in particular you want to say to everyone today?
D: Happy Valentine’s Day!
T: So what do you think of Valentine’s Day, Dan? What’s your take on it?
D: It is so easy to be cynical about its commercialization, but I choose to embrace the spirit of appreciating love in all its forms!
T: That’s how I’ve come to view Valentine’s Day, too. Like, I love the idea of Galentine’s Day, celebrating the wonderful women in my life. It’s also the day we chose to celebrate the birthdays of our 2 dogs – they are both rescue dogs, don’t know the exact date of birth, we just know it was in the earlier part of the year. So, it’s a day that we celebrate that very special, unconditional love between canine and human. Do you have anything to add?
D: I am so feeling loved and loving and grateful for the love in my life!
T: That’s a nice way to feel, Dan… I feel the same way.
D: How do you view today?
T: Well, as I mentioned, similar to you, I love the idea of embracing all different forms of love and care. Definitely when I was younger, I think a lot of people fall into this kind of trap of obsessing over romantic love and thinking that you need to have a partner or another half or a significant other and that’s the love, the romantic love that really matters and defines your life. I’ve kind of made some fairly poor decisions in my life based on that priority. As I’ve gotten older and wiser and figuring myself out more, I’ve realized how much these other forms of love matter to me and how rich my life is in those forms of love.
I am very lucky this year to also enjoy a wonderful partner in romantic love, but I also treasure the love of family and friends and pets (though that’s included in family). Especially being able to spend the last two years with you and getting even closer to you, that love of family is really what stands out to me today. That was a really long answer. Too much information?
D: No, perfectly put!
T: Do you have anything to say at this point?
D: You?
T: Ok! I guess one thing that has been on my mind ever since we started exploring fluency together, but really on my mind lately – I don’t know why, in particular – I have friends who are very well-meaning and they’ll say, “It’s so amazing what you’re doing for your brother.” And I appreciate their appreciation, but I think what often gets lost in the mix –
D: I love you so much and I needed to tell you!
T: I love you so much. Thank you for telling me!
As I was saying – what I think that people don’t often understand: Yes, communication is a big positive change in your life, it’s opened up your world, and your benefit from communication is our primary motive. But what we as your loved ones have gained is so huge, so significant –
D: Yes – don’t make me cry!
T: I’ll try not to make myself cry. We also gained the ability to experience your love more. You can express your love to us – am I embarrassing you?
D: Stop, don’t stop!
T: I’ll try to be brief. We get to feel more of the love that you’ve had for us all of this time and deepen that relationship. The love you have for us is just so… he has so much profound understanding, so much empathy and compassion, but he’s also very kindly firm with us when he needs to guide us in the right way. And the fact that you can guide us to help you manifest your gestures of love – like, I’ll never forget the first time you said, “I want to take you out for lunch.” He takes us out for meals, buys us presents, it’s just amazing to experience that.
D: I am so proud to be able to express my love!
T: And we can better love you by better knowing you. And back to my original point, when my friends are, “Oh, it’s so wonderful what you’re doing for your brother,” ok, fair enough, having access to communication in his daily life is clearly a huge benefit to him. But I’ve gained a closer relationship with someone who really is a soulmate, the best ally that anyone could hope for. And it’s a level of understanding and care in my life that I kind of had always wanted and it’s just amazing to have.
D: I am so touched by this!
T: Good, Dan. But another thing that we’ve been talking about, and I don’t know if you want to change the topic already Danny, is how do you feel about today and how do you feel about romantic love? Or you can take it any direction you want to.
D: I am so feeling so much love in my life from family and friends and community and also through my budding mindfulness practice.
T: Yeah, kind of having that universal love – it’s been a joy watching you dive more into that world
D: But I am also hopeful for romantic love one day and I am dreaming of a relationship of deep understanding and respect and inspiration with a woman Speller!
T: That would be beautiful, Danny! You would be an amazing partner, with all of the empathy and caring and creativity and fun that you have in your heart. She’ll be a lucky lady!
D: Thank you!
T: Is there anything else you want to say about that?
D: I am so shy to share it because I am so used to feeling undesirable and isolated and not attractive because I am disabled. But I am blossoming in confidence and I am certain I will find that love!
T: You more than deserve that kind of love, honey.
D: I am so wanting to also share how my family’s love lifts me up and surrounds me every day, and that my father and my mother created a family of vibrant love!
T: Yeah. I’m just getting emotional because I’m thinking about our dad, and how – no matter how difficult he could be – he was at his core such a loving and caring person. Oh man, speaking of making us cry… another gift of getting closer to Danny is that I feel a very similar kind of love from you. So it’s nice to get to experience that.
D: Totally! And I am so forever touched by that legacy!
T: Well, we’ve been chatting about 25 minutes, and you have a meeting coming up in 5 minutes, so I guess we should wrap it up though I’ve enjoyed this chat a lot. What do you want to leave our friends with?
D: I love you all and I hope you feel loved today and every day!
Wow, this year has absolutely astounded me! I have been struggling a lot in the past few days, overwhelmed by anxiety and a swirl of unprocessed feelings and ideas, and whatever my confusing body has been going through. I have been so dysregulated and frustrated!
But when Tara sweetly helped me reflect on my year, and I could get the jumbled thoughts out into writing, I felt the warmth of a sunrise! The dark and difficult parts of my life are real, but so are the blissful and peaceful and joyous parts. I will always struggle in this life, and I will always find and feel beauty and wonder. I am the expanse between the two, as expansive as the universe.
The ability to connect with all of you is such a light in my life. I wish you all a wonderful close to this year, and a new year of hope and health and happiness! Thank you for being my friends.
Friends! A super exciting announcement: I am a recently-elected member of the board of directors for Teva Community, a fantastic initiative for building community for nonspeaking autistic folks!
We had a wonderful visit to the community site in Prescott, Arizona, last week. I have so much to share, but for now, please read below about a matching campaign running until Friday, December 31, for donations to https://tevacommunity.org/home/donate-now/
More to come soon!
Friends, it is really happening! Everything we have been working towards with building a residential, educational and vocational community for the non-speaking autistic community in Prescott, Arizona is becoming a reality.
Thanks to an anonymous donor we have $50,000 in matching funds to start our initial fundraising towards our phase 1 goal of $1.5 million. Every dollar you donate to Teva Community between now and December 31st will be doubled!
The camp was abandoned 10 years ago and in Phase 1 we will be rebuilding both bath houses, the infirmary, and office, and refurbishing all 12 cabins and the commercial kitchen in the lodge. This will enable us to open our retreat center and run camps for nonspeaking autistic children, adults and their families. We will also be able to run educate-the-educator camps to help teachers and therapists take innovative training methods back to their communities.
Please help us take advantage of this very generous donation.
Please join Joshua and Jake and Kade and Danny and Jeremy and so many others in bringing their dreams to life. Please donate at https://tevacommunity.org/home/donate-now/
Danny With Words 