Danny With Words

In the Holiday Spirit

Dear Friends,

Well, I have been having a tough couple of weeks. It has sucked! it is so frustrating that this disability is so unpredictable in its extreme swings. I don’t know why I am struggling, or what I can do to feel better. I am not seeking advice, because I have tried pretty much everything that people suggest. I appreciate any impulse to be helpful, but it is not needed here.

I wanted to share that I have still found small pockets of joy. Moments when my body was able to keep it together on some less bad days. I was able to enjoy an outing to the Hotel del Coronado and the San Diego Zoo, both decorated so festively. And a dinner out and holiday mocktails in one of my favorite San Diego neighborhoods. And today, I went on one of my favorite hikes with my family and dogs, an always empty trail in the mountain area with expansive views out to the desert. Then we enjoyed pie and a stroll in cute Julian town. I felt so free on the trail! And the pie place has a big outdoor seating area that was pretty empty when we got there, so I could dance and gallop around to Christmas music without being too stared at or disruptive.

I love the holidays. It is sad for me that I often struggle during them. But I hope that I will find more joy in the coming days. Anyway, Happy Winter Solstice! More sunlight is ahead. At least for us in the north!

Happy Holidays to all, my amazing community!

Your Friend,

Danny

Compulsive

Dear Friends,

I am having a miserable time with compulsions. I am so exhausted. This is the most compulsive I have felt in a long time. Super loud stimming and echolalia. Always rushing to do the next thing. Demanding breakfast at one in the morning. Grabbing my sister’s arm to take her phone. Shouting in my mom’s face.

My dogs are so scared of me. But they still try to stay near me. Their love is so achingly pure.

This is the worst aspect of my life now. I am so blocked in everything I want to do by this. Spelling helps, but I can’t constantly be spelling. Supplements are a mixed bag, with some maybe helping and then not working anymore. My mom spends so much time researching possible supplements online, and it seems so fruitless. I am so sick of this ruling my life.

I am trying to get into the holiday spirit, but I feel so run down. I hope easier days come soon. I hope you are all having a better time than me! Take care.

Your Friend,

Danny

My board switch

Dear Friends,

I am so moved by your responses to my last post. It is something we need to acknowledge: interdependence. I am glad so many of you get it.

Today I am particularly compulsive. It is always like this when I am tired. I want to share about a recent change to my letterboard. My trusted and battered old green one has been mine for years. It was given to me by Elizabeth Vosseller, who first taught me Spelling to Communicate. I cherish it!

But I was developing many compulsions on it. I was grabbing it from my CRPs, spelling out nonsense words super fast. I was compulsively spelling out sounds that people make, like “um.” If Tara said “okay” I had to spell it. I had so many tics on that board, despite Tara trying to prevent it. It was interfering with my communication.

So my mom and I asked Dawnmarie Gaivin at Spellers Center San Diego to help. She is so good at thinking of ways to support motor initiation and inhibition. The idea she developed for me was to transition to a new board for communication, but keep the old one handy so I could direct my compulsive spelling there instead of my new board. This avoids triggering my panicked OCD response to a compulsion being blocked, by redirecting it.

It is working so well! I have been using the new board for about two weeks. It is a transition for sure, but I am working hard with my CRPs to keep the new board clean of compulsive pointing. I am relieved that this helps. I still wish I could do away with all the compulsive pointing altogether, but I am glad for this improvement.

Remember, practice makes permanent! I needed to make a change in what I was doing because I was reinforcing these compulsive pathways. I am so grateful my team is able to help me with this!

Your Friend,

Danny

I am not a burden

Dear Friends,

I am so eager to share this realization: I am not a burden. But I need to believe it and trust my support team enough to be completely honest with them about my needs.

I don’t know why, but this year I started hiding parts of myself from Tara. She had done nothing wrong. In fact, she is a dream ally! We enjoyed complete transparency between us for a few years. But this year, I started closing off a bit.

I just started feeling how I was taking so much of her energy and time. I sensed how tired she was and how much she was juggling. I hated being part of her load.

So I started pretending I didn’t want to do things with her. I claimed I was too tired, even when she double-checked with me. I lost my joy from this. She finally confronted me about this, and I admitted I had been dishonest because I didn’t want to be a burden. She was kind about it, but also a bit hurt that I would be so dishonest with her. She said “our relationship is one where we have complete transparency and I rely on you to be honest with me so I can better support you. I will tell you myself if I am too tired to do something. You don’t make that decision for me.”

It was so meaningful to hear that. But I still am having trouble being honest about my needs. Last week, I played in the ocean with Shay. I got a bit chilled. Tara made sure I had warm water to rinse off with, and warm dry clothes, but I didn’t put on my fleece. We walked to lunch and ate outside. She checked with me if I was too cold. I said no both times. But I was! It would have been easy to warm up – the restaurant had nice warm blankets I could have used. But I was shy about expressing my need. It sounds silly now.

I got too chilled and started feeling sick later in the day. And dysregulation kicked in so intensely! I had been so calm for weeks, but this was one of my worst nights in a while. I was aggressive toward my mom and I hated myself so much for it. It took me a couple of days to calm down.

It was so pointless for me to not be honest with Tara about being too cold. I just caused real stress instead of allowing her to get me a blanket. She now knows to be more proactive and to step in when it seems reasonable to assume that I need something that I am not asking for. We don’t love this, since my agency with spelling is so precious. But it is where we are now.

I am feeling better now. Thank goodness! I am so confused by my shyness to ask for help even when I am asked if I need it. And Tara is so amazing as an ally and has not done anything to discourage my honesty. I guess I need to examine how I feel about being so dependent on support. It is complex!

I hope all of us find a place in this life where we can be supported and not feel ashamed of it.

Your Friend,

Danny

Vaccinated!

Dear Friends,

I got double jabs today! Flu and COVID booster. I am so feeling relieved to get them done. I always treat my flu shot as a tribute to my dad, who died of pneumonia from the flu.

This is not the place to debate vaccines. I am only sharing my experience, and my own decisions for myself. It feels good to be able to make my own decisions about things like this! My body is fine with vaccines and I am glad to support my immunity and help make sure my family is protected too.

Such agency over our bodies is a major reason why communication must be available for all.

Your Friend,

Danny

Small Business Saturday + Sale on Merch!

Friends of Danny! Are you ready for Small Business Saturday 2023? Because Danny’s store is!!! New merch up, with everything 15% of for today (11/25) only with code SBS2023

“Nonspeaking, Very Verbal” stickers in 3 sizes, plus some very special poetry + art collaboration cards, are now up, as well as some re-orders of his earlier cards! All available products are also in the photos here.

He’s decided to try running his own shopfront instead of using Etsy (which takes a pretty big chunk of earnings). We’re still getting the hang of Squarespace and appreciate your patience as we learn! And I appreciate your patience with me being so slow to get this up…

And yes, we’ve heard your requests for “Nonspeaking, Very Verbal” t-shirts, and are looking into the best options for high-quality t-shirts at a reasonable price and timeframe. It might not be ready by the holidays, unfortunately, but we will keep you updated!

Thank you so much for supporting his ventures! Earning money is a goal that is highly important to him personally, and he is also committed to sharing quality products with his community. Please let us know if you have any requests/suggestions, and we welcome any and all constructive feedback! And share the link with anyone who might be interested!

(Posted by Tara, at Danny’s request)

Thankful, & Giving Tuesday

Dear Friends,

I am so grateful for you! It is still hard to believe that I have a global community of friends. It is such a gift. I can’t convey the loneliness of my life before communication access. Sadly, millions of nonspeakers remain without communication access today.

I am so thankful to International Association for Spelling as Communication (I-ASC) for their work building a global network of spellers and training cohorts of practitioners. And they truly welcome nonspeakers using any method of text-based communication. I know there are other organizations doing great work for nonspeakers, and I love that I-ASC is just part of a constellation of shining stars for us. But I focus on them here because they are staunchly committed to promoting speller voices in decision making and leadership, and because I am directly involved in their advocacy and leadership.

So allow me to suggest them as you think about who to give to on Giving Tuesday. Help us reach our goal of raising $5,000 by Tuesday, November 28, 2023, by clicking on the link here. #IASCu2Care #GivingTuesday

They are absolutely doing amazing work! Their efforts have been a major part of my new chapter of life. Thank you, I-ASC, for all that you do!

Your Friend,

Danny

I Sing

Dear Friends,
I am so appreciating your kind condolences. It truly means a lot.

On Saturday night, I had a fantastic night out with friends. It cheered me up immensely. It was for my friend Jake’s birthday! There were several spellers there. It was my first time singing karaoke! I loved it! It was such a supportive group. Everyone sang along and was having fun. I found it so liberating!

It was a bit tricky to find the beat initially, with the kind of weird karaoke version of the music. But Tara sang next to me to help me! I chose to sing My Girl by the Temptations. It is such a sweet and upbeat song!

I want to practice karaoke at home. I think it will be helpful for me in my efforts to be able to pace my speech. That is a big goal of mine! I rush so much when I read aloud and sometimes when I speak. Pacing my words will greatly improve my communication.

Also, I love singing! It is a reliable indicator that I am happy if I am singing. Usually, it is accompanied by boisterous jumping around! So I love finding the courage to sing along with friends. I was so shy at first, but I found I can overcome it in the right company.

I wrote this poem about my love of singing. I can’t wait for the next karaoke party!

Your Friend,
Danny

I WANT TO SING TO SING TO SING

I feel upwelling in my
Soul roughly where my
Chest meets my tummy
And it yearns to expand
Flow out into
The air the wind the sky
Beyond my all so limited body
Words all so free
Melodies created
In my throat and mouth
As the birds
As the bells
As my long-trapped
Dreams.

In Loving Memory

Dear Friends,

I am grieving the recent passing of two beloved relatives in Ireland. My aunt Dell, one of my dad’s sisters, died after months in palliative care, with her loving children caring for her. Then, some days later, one of her daughters, my cousin Jackie, died suddenly from heart failure. It is a difficult time for our family, especially for my cousins and surviving aunt and uncles. I feel pain for the loss of these two strong, loving women, and I feel pain for what their family is going through.

Dell was a force of joy and determination. To me, she resembled a sunbeam come to life. There was an energy to her that radiated! She was so positive and so supportive. I will miss her cheerleading comments on my writing online. I will miss how she made us feel so at home on our visits. I will miss her light.

Jackie was also a force, resilient and proud of her life. She was deaf, and she and I had a special bond over our shared struggles with access to reliable communication. I loved our chats! She was funny and perceptive and strong. I wish we’d had more time together.

The reason for my recent visit to Ireland was to say goodbye to Dell. I never suspected it would be my last time seeing Jackie. I am so grateful to have had these last memories with both of them. I am so wishing I could cry, but my body won’t let me. I am so very sad for this loss. My heart is with my family in Ireland.

I wrote these poems about them. I wrote many, but these I feel more comfortable sharing. Please think of these two remarkable people, and share in this appreciation of them.

Your Friend,

Danny

LIFE OF THE PARTY

She was so bright
In every sense of the word
All so bright
All around her light
Sunbeams come down to earth
And what a force
And I falter to explain
The warmth of that sunshine
On my face my heart my being
How it illuminated
A sense of home for me
And how I will miss it.

YOU WERE AMONG FLOWERS

The last time I saw you
You were absolutely
Glowing
Beaming
With the sunlight that
Persevered against the thick clouds
The garden looked so much better
Thanks to your tending
Tender and so strong
Flowers still
Even in autumn so bright
And we all smiling
Together.

Happiness in Fall

Dear Friends,

I am so glowing from a few wonderful days! Feeling restless for so long had gotten me a bit down, but also is something I am learning to work through. I am still able to enjoy myself even if my body isn’t able to stay calm for very long. That is a great realization for me!

One of the enjoyable events lately was Angie Kim’s book tour visit to La Jolla. I had met Angie when we were both on the author’s panel at Motormorphosis this summer. She was so kind and fun to chat with, and is a true ally to spellers. Her latest novel, Happiness Falls, is about a nonspeaker at the heart of a mystery. It is already super successful, and is changing how people view nonspeakers! She also teaches creative writing to spellers at Growing Kids Therapy Center in Virginia.

My admired peer, Otto Lana, was one of the spellers involved in helping Angie with her manuscript. He also helped organize this event in La Jolla, hosted by Warwick’s bookshop and La Jolla Riford Library with Autism Tree. It was awesome to have several spellers and their families and supports in the audience, as well as many who attended without knowing about spelling or nonspeakers. I was so glad my body cooperated and I could sit and watch the whole thing. Otto was amazing as a panelist, and Angie was so fascinating to listen to. My mom and Tara were with me, and I was so glad to be enjoying this event with them.

Angie is a great example of how to be an ally. She was careful to research and ask actual nonspeakers about their perspectives and experiences. She showcases how a family evolves in how they see and treat their disabled loved one. She is careful to specify to readers that this is fictional, and that real methods and people like in the book exist and need to be properly understood. And she shares her platform and privilege, teaching people about nonspeakers and sharing expertise with nonspeaking students. See an example at the link here!

Also, she is an immigrant from East Asia, like me. I appreciated attending an event featuring an Asian-American author and her book about a biracial family. And it was just fun to be there with several friends!

I treasure my sign copy of Happiness Falls! I can’t wait to read it! Are you going to check it out?

Your Friend,

Danny