Dear Friends,

I am about to travel to Ireland to see family. It is a trip of many emotions. I am so full of feelings for these family visits, and it gets more precious with time because my beloved aunts and uncles in Ireland and Japan are elderly and I know any visit might be a last chance to make memories with them. That is all I want to share now. I probably won’t post much until I get back in a couple of weeks. Hoping you all have as many chances as possible to be with the people you love.

Your Friend,

Danny

Dear Friends,

Wow, I have had the best day! It represents a lot of progress for me in diverse ways. First, Tara and I went ocean swimming in La Jolla. Last time we snorkeled, my body somehow started to struggle with keeping my mouth closed around the snorkel, so it kept flooding and I started to panic. Luckily, Tara was once trained as a rescue diver, so she kept her cool and calmed me down and guided me to swim safely to shore. But I was shaken. So she suggested we focus on ocean swimming for now, so I wouldn’t need to stress about the snorkel. I love that I could accept this alternative without seeing it as a failure. It is okay to adapt to my current needs! And I loved our swim today. Visibility wasn’t great, but the water felt fantastic and my swimming skills felt strong. It is a beautiful spot, and we took frequent breaks to admire the cliffs.

Then we walked along the coast. I loved it! Seeing seals and sea lions and pelicans is always so cool. But I got a bit chilled (it is unseasonably cool these days) and that made me a bit anxious. I went into Arnold mode, stimming and stomping and running. It was so stressful. It was so quick to kick in!

But I kept trying to ground myself, and Tara tried to help too. I have been regularly meditating with my mom, which I think helped. After a tasty burrito, I felt happy and light again.

Then I went to a local barbershop in Escondido, where I live, where I got a sharp cut and cleanup of my facial hair. The barber was so cool and loved my spelling! And I love how it turned out.

Then I got to hang out with some awesome people at a Nonspeaking Leadership Council meeting for I-ASC. I love this group!

I am so proud of my adaptability and resilience. And today was such a great representation of all I can do with communication. It is amazing! Shaping my own life, managing my anxiety, making my voice heard in decision-making, and also cherishing all of it. It is a remarkable change from a handful of years ago.

I hope you are all finding even small things to be proud of and enjoy. Take care!

Your Friend,

Danny

Dear Friends,

It has been a while since I have shared from my personal life. I needed some rest and also needed to focus my energy on finding joy in my life again. I had been losing it, steadily, over repeated spans of dysregulation and restlessness. I felt perpetually behind on my goals and commitments. Any slightly regulated time was spent scrambling to catch up. I was not able to enjoy my life as I needed to. I felt my sparkle fading. It was so sad. And I felt so flat.

So I asked Tara to help me. She had noticed that I wasn’t asking to do my usual fun outings, and that I was choosing work and rest but not fun. She gently suggested that I make enjoyment more of a priority. So as I realized she was right, I asked her to be sure that I was scheduling fun things into my plans.

And I think it has helped so much! I feel so much happier these days. I accept that my goals will take longer than planned. I am less distraught by missed deadlines. I am treating joy as an important pursuit. After all, my life is hard as it is. Why not appreciate the joys that I can access now with communication? What is worth spending my energy on if I am not cultivating joy in my heart? I am more vibrant and active when I am happy. I can share more when I am joyous.

We self-advocates face a lot of pressure to always be in advocacy mode, and much of that pressure comes from ourselves. And many of us are also actively working on skills for managing our bodies better and advancing our fluent communication skills and strengthening our regulation. Not to mention goals for our education and careers, or concerns about money, or all the logistics of being disabled. It is a lot of heavy stuff. But we deserve joy, too!

So to my peers, I hope you can find more joy as you do all that you do. And to all, let’s help each other build more joy in the world!

Your Friend,

Danny

Dear Friends,

It is after Labor Day, also known as the beginning of summer for locals. I love this time! All the warm and long days of summer, but not the summer crowds. And the anticipation of autumn! I love it.

Tara is back from her internship, and it seems she will be ready to start working as a registered Spelling to Communicate practitioner soon. I am so very proud of her, and I am a bit biased, but I think she is a very special CRP (Communication and Regulation Partner) and will be a very special practitioner. I am so glad other nonspeakers will get to work with her! And though I worry a bit about her having time for me, I know that I am her priority and I know she will always make time for me. This is a big step toward some of our big schemes for the future!

I also had a time of learning while she was gone. Our mom and I made a breakthrough in our communication! We were able to chat openly for the first time, with a lot of time and effort put into working up to it over months and years. I am so thrilled! I am so proud of us.

September will be a time of settling into the new. Tara’s career shift, me expanding my number of open CRPs, and enjoying the end of summer while planning big things for autumn and beyond. I am so absolutely looking forward to it!

Your Friend,

Danny

(Photo from Labor Day beach day with my mom, little sister, and the two canine family members)

Dear Friends,

Today I went to see Tiffany Hammond of Fidgets and Fries at her book signing in San Diego. It was at the Carmel Mountain Barnes and Noble, which actually was the main bookstore of my childhood. I prefer small independent bookstores, but any bookstore still standing in Amazon’s wake is good with me! And I do feel a fondness for this particular store as a part of my growing up.

It was so great to see Tiffany and Jojo again! I really appreciate her work for our community, and she is also just a cool person. I was so happy to witness how excited fans were to meet her! I am so in awe of her tour. She is so impressive in her strength!

Tara and I then grabbed some Jamba Juice a few doors down. Another exercise in nostalgia. That Razzmatazz still tastes the same, though I haven’t had one in years! Our childhood and adolescence as suburban kids featured many outings to this Barnes and Noble and Jamba Juice. It is a bit bland, but still cherished.

I feel a bit better today. Yesterday was bad and I wouldn’t have been able to carry out any visit to a store. I was so dysregulated. But today feels much lighter. And I got to see a friend and hero to me! So, I am feeling more sunny. Hope you are all enjoying your weekend!

Your Friend,

Danny

Dear Friends,

I am once again having a tough time! Geez… it has been so relentless this year. Not a lot of intense or agitated dysregulation, but an awful lot of compulsive restlessness. It is better than being super loud or aggressive. But it is still discouraging and exhausting.

This time has been so low for me. I am so full of loathing for my disability. I am so feeling like I am an inconvenience. I am so ableist against myself. This is a tough life.

It all has to do with my feelings of vulnerability. That is such a profound trigger for me. Anything that reminds me acutely of my almost all-encompassing dependence on supports and services can set me on a spiral downward. And two recent home visits for different services I receive really triggered my anxiety over my vulnerability.

I am so trying to connect with my wounded inner child. That is where my vulnerability and my intense anxiety over it began. Imagine being a toddler, and slowly realizing you couldn’t do what others seemed to do so easily. Talking, moving at will, expression emotions, and making friends… none of that came to you. No way to communicate. No one who knew what you were going through. No one to explain to you what was happening in your body. Learning how problematic your existence was. And each year, learning more and more how trapped you are and how difficult your life will be.

I am so needing to process that pain more. It is so heavy. I am so feeling latent resentment against my family, because I needed them and they didn’t understand what was happening. It is not fair because they loved me so much and tried their best. They have not had easy lives either. But I as a small child needed support, and no one was able to give it to me in the way I needed. As I wrote in one of my poems: “And fault is somehow moot/But what are we supposed to do with all of this anguish?”

It is a tough life.

But I will find peace and joy again soon. I will grow more resilient with each trial. I will find the immense beauty in my life. I am learning to trust that dark days pass. And indeed I am already starting to feel brighter.

I am so happy to share that my younger sister Eira and my mom did awesome as my communication and activities supports while Tara was gone. It was a very encouraging test of my support team! And all the home visits went well and my services will continue. And we survived the tropical storm! So I am full of gratitude, even as my profound anxiety overruns my tired body. I hope you are all keeping well!

Your Friend,

Danny

Dear Friends,

I am so grateful for your kind birthday wishes, and so happy after a fantastic birthday gathering last night! Thank you!

Tomorrow, Tara goes on a much deserved vacation. She has been working so hard this year, and is so hard on herself. I guess it is an oldest sister thing, plus her own personality and experiences, of course, but whatever it is, I hope she learns to be more gentle with herself. Anyway, I am so glad she will go off to surf to her heart’s delight somewhere tropical and less crowded than San Diego.

I am not too anxious about her being gone for eight days. My mom and our sister Eira are stronger CRPs than the last time Tara was away for an extended period. They are awesome supports! I am looking forward to making progress in how much they can support my communication. Of course, my mom also does most of my support in other ways, so that is already all good as is. It will be good to push ourselves more in communication without Tara to rely on. I am actually excited to see how we grow! Though I will miss Tara.

I am so hoping for a future where people like me have an easier time finding strong networks of support. That will take a lot of work, but I am thinking that it is possible. This kind of work is among the most precious and meaningful work that people can do, supporting others in interdependence. It should be treated as such in the world of practicalities and logistics. But that is a discussion for another time!

Bon voyage, Tara, and let’s do this, Mama and Eira! And friends, let me know how the support teams in your life take care of themselves!

Your Friend,

Danny

Dear Friends,

Wow, you are an amazing community! I feel so loved from your kind comments. It really helped me!

I am so full of things to share from Motormorphosis. I can’t think of how to start! It was so full of wonderful conversations, fascinating presentations, and loving community. There were so many important and inspiring ideas shared, and there were so many connections made and strengthened. And it is such an amazing feeling to be in a truly inclusive space.

My friend Noah made a powerful presentation on trauma. It was so needed! And the research panel was so cool, and Dr. Elizabeth Torres’ presentation made me feel so validated. Keep an eye out for the documentary on her work for a revolution in how we view autism! And I loved being on two panels alongside brilliant people. The BIPOC panel in particular was so important, but the real work must happen beyond the panel. And I have to add that I adored my blanket by Brent.

I am so full of more memories to share. Hanging out with friends in the lobby and at my vendor table and in the meeting rooms. Meeting new friends who like my work online. The amazing pool party. And quiet walks to dinner in the mellow evening with Tara. It was all so fantastic!

I have so many schemes and dreams in my mind getting ready to become plans. And I feel so happy after this gathering, despite my tough trip home. Great things are ahead! Thank you I-ASC and all my community, including you, for all the support and inspiration.

Your Friend,

Danny

Dear Friends,

Well, the rest of Motormorphosis was amazing! I will post more in the coming days. But today, I need to share that I had a panic attack on the plane before takeoff on the way home. It was bad. I freaked out and ran from the cockpit almost back to the gate, pushing people and so full of self-loathing. Tara ran after me, desperate to keep me safe and so scared while also struggling to carry the bags that I had dropped. I have never had this happen on a flight before, so we were both blind-sided.

I managed to run back onto the plane, so embarrassed and shaken, with Tara behind me and defending me from a rude comment like a fierce sister bear. I was still in panic mode made worse by feelings of shame and confusion and fear about what might happen next. Then a miracle: our friend Gigi, an S2C practitioner who we know from San Diego and who has a special calm and kind energy, was at the back of the plane, near our seats. She was with her family of young Spellers and her husband. It was such a relief to see these friendly faces.

But I was still in panic mode. I tried to stay seated but my body flipped out and I tore off my seatbelt and trampled Tara and the stranger next to us, and sprinted up the aisle until the crowd still boarding blocked me. Gigi and Tara followed me and helped me bring my body back to my seat. The stranger agreed to switch seats with Gigi so she sat next to us.

And still, my body freaked out, and I trampled Tara and Gigi to rush to the bathroom. The flight attendants had locked them for takeoff, but Gigi got them to unlock one for me. I was so sure we would get kicked off the flight. I was so mortified. I wanted to disappear.

But I made it back to my seat. And I was able to sit through the flight. I felt so low, so absolutely shattered after the warm glow of Motormorphosis. I felt so unworthy. I felt so afraid that my dreams of travel were now impossible. I worried about how Tara was feeling, and I could sense her feelings of stress and sadness and anger at how hard my life is, and shame that she couldn’t help me more. I worried about the landing, too. I was so embarrassed as well. I wanted to hide.

I managed to make it through the flight, and the taxi to the gate and waiting to disembark were tough, but Tara kept me constantly Spelling in those minutes to keep my body focused. It was such a relief to get off the plane and make my way home with our sister, and to have my loving mom and dogs welcome me back to a safe and caring home.

I am still processing this awful episode. My family and support team have helped me feel less shame, and I know I would never think less of my peers for going through something similar, so I am needing to treat myself the same way. I hope I can remember more the wonderful feelings from Motormorphosis over this bad event with a bit more time. And I hope my peers and I will one day fully internalize this important idea: we should never be made to feel shame for what we can’t control. I love you all, and we are part of a more compassionate future.

Your Friend,

Danny