Dear Friends,

Wow, I feel so good today! It has been a while since I have felt this relaxed. My recent travels have been so tiring though fantastic, so maybe having time to rest has helped.

I am so loving the feeling of autumn. To those who say San Diego has no seasons, I say you are wildly imperceptive! The air feels different, the light is more gentle, the ocean looks more mysterious, and the arid landscape seems more spacious. The shorter days lead to an inward seeking, a sense of meaning that eludes explanation. I love it.

I am so intrigued by the origin of Halloween, the Irish tradition of Samhain (pronounced like Sawin). I recently learned that the original Jack-o-lanterns were carved from turnips! So funny! But what truly intrigues me is the idea that this is when the boundary between this world and the Otherworld is opened. What a profound notion. It is so fascinating to think about the idea of other realms and a special time where there is a portal to them. It is so interesting as a belief and as a way of seeing how our ancestors saw the universe. I am actually really interested in this kind of belief, and I want to learn more about it.

It is also fun to embrace the spooky side of the world! It is liberating in a way. I love somewhat macabre humor and ghoulish tales. I love dark and somewhat twisted gleeful storytelling! I am so going to try to learn more about movies and books and TV shows in this vein this October. Do you have recommendations?

I always profoundly appreciate visiting Dia de los Muertos celebrations, and find them so moving. I swear I feel such spiritual energy around the shrines! It is so powerful. I wish to better know of such celebrations and traditions from around the world. Do you have one to share with me?

This month, I will make an altar to my dad. I bought an altar mat in Japan back in March, as well as incense, and Tara bought me a beautiful ceramic vessel in Joshua Tree earlier in the year. It is important to me to have this symbolic place to focus my thoughts about him. I am so aware that some of you might think I am delusional, but this is so real to me.

How will you observe this transitional month? How does it make you feel? I am so eager to learn!

Your Friend,

Danny

Dear Friends,

I just returned from another trip – to Phoenix, by car. This was for the Teva Community board retreat. I am so proud to be on this board. It is a wonderful group of mindful, effective, and fun people. I am learning so much from them! And my ideas are listened to with respect.

I myself will likely not be one of their future residents, because I hope to live in Ireland or elsewhere in Europe one day. But I love being part of the vision for Teva in Prescott, along with many other spellers on the advisory board and my fellow board member Ben Breaux. This is an exciting model for thriving and respectful communities for speller adults. It is ambitious, but our board is extremely capable.

We had a great retreat, with a lot more clarity on our goals and how to achieve them. I am excited for our next steps!

I was still tired from the Ireland trip, as was Tara. But we enjoyed this hop to Arizona, and time with our friends connected to Teva as well as a fun visit to Phoenix Art Museum and viewing the eclipse. And the long drive, while grueling at times, is scenic in many places and so meditative. And now I am relieved to be home with no more travel planned for this year!

Your Friend,

Danny

Dear Friends,

So, it has been a while. I needed to take time away, both because of my trip and because I wanted to process a lot. It was a profoundly meaningful trip, for many reasons. I don’t want to share much about family matters, just that it was so important to spend time with loved ones. I also got to visit my great-grandparents’ graves for the first time and also got to visit the town where my grandmother and some of my dad’s siblings were born. And I got to visit my dad’s grave shared with my grandparents. All around me, I felt my family’s energy. It felt like home.

It was my longest time away from my mom, and also my longest trip with just Tara. I feel so proud of this! It was a lot for Tara to manage, along with coordinating all the arrangements and the emotional side of things with family, but she was so good at being my travel buddy. She and I had an awesome detour up to Donegal, where I had never been. Wow! It was so wild and yet calming. It was astounding.

I also got to meet with some local Spellers! I loved that. There is a lot to do for building community and expanding access to communication in the country. There are some strong advocates already, and I am excited to scheme with them in the future!

I am still jetlagged and my body is so confused. My regulation was very challenged in the second half of the trip after being over-tired, but I managed to stay calm even though I couldn’t sleep for several nights. I am so grateful I could maintain composure despite being on edge. One of my cousins in particular is so great at including me, and she helped me stay engaged in helping her cook one evening when my compulsions were particularly strong and Tara desperately needed some time alone. I loved that! There was no shaming, just joy in being together.

I have been struggling with restlessness and dysregulation since coming home. But it is not too bad. There is so much to process! And I am so eager to share more in the future. For now, hello again, and it is nice to be back!

Your Friend,

Danny

 

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