The Day After Christmas

Dear Friends,

Happy holidays to all who observe! We had a wonderful Christmas with beautiful outings, delicious food, fantastic gifts, and lots of relaxation. I felt so resilient and joyful, as a much needed contrast to the weeks prior. This was such a relief!

This year I bought a new living Christmas tree for my family. Our old one looked so sad and I want to plant it in the garden. The new tree was a bit hard to find – it seems living trees are not popular here now. It was also a bit expensive. But I insisted on paying for it myself. Why? Because it felt so empowering to be able to do this for my family!

I am so absolutely thrilled that I can make some money here and there with teaching and interviews and presentations. This is huge for me, who until about three years ago had no hope for any meaningful livelihood. Giving to others is one of my absolute favorite parts of being able to communicate and being able to earn some money. It is so important to me to be able to share tokens of love and appreciation!

And I also love being able to be part of shaping a memorable holiday experience. I am so proud of this tree, and each time I look at it and see our ornaments so pretty in it, I feel so full of contentment. We have rarely gotten new trees, as money is not exactly bountiful for us, but sometimes a splurge is worth it!

This was an absolutely lovely Christmas, and I am so delighted with how I felt during it! Sending warm wishes to you all, especially those impacted by the severe winter storm.

Your Friend,

Danny

Low Tide Tidings & Retiring the podcast

Dear Friends,

I so love the more extreme tides of winter! Though I have not been doing ocean sports lately, I have still been enjoying walks on the coast. They are so meditative and gorgeous, and help me find peace and process life. Yesterday, Tara and I went on a low tide exploration in the La Jolla area. We checked out a couple of spots I had never been to, and it was amazing! I so love the freedom I feel on these walks and the energy of the natural world is so invigorating. These spots were teeming with tidepool life and it was so gloriously beautiful to walk along beaches and cliffs and rocks.

I am using this post to officially retire our long dormant The Ocean and Us podcast. I know this is not surprising, but I wanted to give it a nice goodbye. I had high hopes of shaping it into something bigger, and I so loved the interviews we did, but we didn’t have time to keep it up along with my other activities. I am sad and a bit disappointed, as I think it had some great potential. But I think my more mainstream advocacy work is more pressing. I also know that it achieved a lot and moved several people and inspired many Spellers. It opened some amazing doors for me. And it helped me learn a lot about sharing on social media and how even a small podcast with a very irregular schedule could have an impact. This really helped me build courage to share more deeply in my Danny With Words social media.

I wish we disabled folks didn’t need to advocate so much. I would love to spend most of my energy on an ocean project! Maybe someday. In the meantime, I will still be pursuing ocean adventures. And you can follow me, if you don’t already, at Danny With Words. I so appreciate everyone who shared their time in interviews and everyone who watched!

Very gratefully yours,

Danny

Trying to trace the past

Dear Friends,

I am feeling so much better! Recently though, my OCD has flared up especially around trigger foods. This is distressing because I am trying to work on being healthy and the compulsive gorging sabotages that! And I am horrified that sometimes I even am driven to frantically snatch food from the trash.

Today I started to really explore this with my therapist. This is so complex and deeply rooted and sensitive, but it feels so empowering to shine some light on it! I have so much to process and I so feel like it will be helpful even if tough. There is so much that young me has gone through but could not share.

I have asked my mom to help me trace my life experiences and my evolving behaviors, and she is so eager to help. Tara is so supporting me emotionally, too. Even our dogs were snuggled up to us while I shared with my mom. I started smiling and delightedly giggling because I felt so safe and loved and hopeful!

Thank you all for caring and following my journey. It means so much that others can learn from my experiences! That is all I will share for now, but I hope to share more of what I learn.

Your Friend,

Danny

Poem: Our brown bags with colorful tissue

Dear Friends,

Thank you so very much for your kindness with my last post. I am coming out of it, though still feeling very rundown. But I was able to have a lovely day out with Tara a couple of days ago. I had been feeling so low about missing out on the pre-Christmas spirit, worried that my dysregulation would make me miss all of the holiday excitement. So I proposed that we play hooky and go to some cute little spots in South Park while I was feeling okay!

It was so wonderful to enjoy a leisurely day out! I was still a bit on edge but much calmer, and so I could really enjoy without too much fear of going into monster mode. I am so glad we took the time to do that and I am so going to treasure memories from that day of small business present foraging and dining. I am so feeling more in the holiday spirit now!

I hope to reply to comments and messages soon, but I am so wiped today. Thank you for your friendship even though I am limited in my ability to interact more with you!

Your Friend,

Danny

Our brown bags with colorful tissue

by Danny Whitty

I dream of our future in some charming European city

Where we walk everywhere and enjoy cafes and bookshops and

Leisurely meals and the energy of savoring life

And I know we will get there but it might take some years

So for now we do our best to

Find that zest that joy that contentment

In the sprawled apart nooks of San Diego

And we indulge in an al fresco tea and cappuccino and croissant

And a wander through a thoughtful boutique

And some poking around a local bookstore

And a lunch surrounded by Christmas decorations

A bit of mineral water and Santas

And a stroll through the park

And I guess we will one day be over there but

Really that contentment is already in our togetherness.

Tough Times

Dear Friends,

I have been really struggling especially the past weekend. When my dysregulation takes over and kicks my OCD and panic response into high gear, I feel like a monster. That is not an exaggeration. I was truly disruptive in ways that caused distress to my family.

I don’t know how many can really understand this if you don’t have firsthand experience with my flavor of this disability. It is such a cruel disability in many ways. It is not just that my body won’t do what I want. It is also that it often aggressively does what I don’t want it to. It is not about being ashamed of my disability. It is about realistically facing the worst parts of it.

I am so upset about how I acted and I don’t need comfort or assurances, though I appreciate the urge to share both. I need to be able to share my frustration and have it heard and validated. I know it is not my fault. I know it is my disability. I know we all wish we could live in a world where dysregulation is not disruptive to ourselves and others, but we don’t and some realities are hard and we need to accept that. And I know many activists try to stifle the experiences of families and caregivers, because somehow they feel that those people can’t also suffer. But I know the pain and stress of my family when I am out of control, and it is not them being selfish or ableist. They love me wholly, and they are trying their best and are doing more than most could in their shoes.

I am trying to continue making progress in my regulation through therapy and almost constant effort and a healthy lifestyle. I have made remarkable progress over the past couple of years. But it is a long and difficult journey. I am so confident I will be ever stronger, but it is also my reality that such tough times will likely always be in my life. And I am allowed to be sad and upset by it.

Your Friend,

Danny

My Friendship Wish

Dear Friends,

I have been having a tough time since Thanksgiving. I am so trying to figure out why! It seems to happen on the holidays, even though I love them. I am so tired because of it, though thankfully I seem to be calming down.

I got to hang out on Zoom with some of my Speller bros yesterday, and it was so soothing to be in their company, even virtually. No one else can understand like my fellow nonspeaking autistic friends. It is so healing to know others like me, and to be able to comfort and help each other. Even hanging out without communicating by words is so good for my heart.

Friendship with people like me in this disability has changed my life and brought so much joy and comfort and hope and fun! How I longed for it for many lonely and misunderstood years! How amazing to feel now that I have a family of peers around the world to love and be loved by!

I wish all of us such friendships of mutual understanding and care.

Your Friend,

Danny

SpellX 2022 Video. All Grown Up: Some words from “older” Spellers

Dear Friends,

I am so proud to share this extended version of my SpellX video! This was a collaboration with several friends, including new ones. Our words come together to share a bit about the experiences and perspectives of adult Spellers. This is a topic that needs much more discussion and work, and I hope to continue this examination of our needs and situations.

Thank you to all my collaborators and their CRPs, and to I-ASC for hosting SpellX! And thank you to all who watch this. We will share snippets on social media over the coming days, too.

I have been having a rough few days, but sharing things with you always gives me a boost. Take care, and more soon!

Your Friend,

Danny

In Thanks – a poem

Dear Friends,

Happy Thanksgiving to you all! My life is so rich, ever growing more so. Gratitude is infused into my being, and it is a gorgeous and exhilarating way to live. I am having a bit of a tough day, with some anxiety and OCD and grief for my father; holidays bring up so much. That is also why I love them, though. Those struggles deepen my understanding of the universe. And of course there is a lot of joy and merriment and togetherness! And food!

I am so thankful for our connection and the communication access that makes it possible. And of course I am so grateful for my loving family and our enchanted if often tough lives. Wishing you all so much gratitude and contentment!

Your Friend,

Danny

In Thanks

Five around the table again

Somehow seems crowded now

Bustling happy crowded

How we shrink and stretch and flow and grow

Into time multiplying time

A spiral deepening

Into a sort of conclusion

Not the end

But an ever beginning.

by Danny Whitty

Typing Sabbatical

Danny has been taking November to focus on making progress with autonomous typing, i.e. typing on a keyboard on a stand, without a CRP holding the keyboard. This jump in communication mode is highly challenging and energetically taxing, and Danny realized he needed to scale back on other activities and devote more energy to this goal. Here are 2 of his social media posts on this process!

Announcing his “typernation” (typing hibernation): November 7

Dear Friends,

I am starting a month of focusing more on typing autonomously. This is an important goal for me. But it takes much more energy than having my CRP hold the keyboard. It is hard to explain! This means that I will scale back my activities to budget my energy! This is my first post typed on a stand.

I will still post here but maybe not as frequently as usual. Wish me progress during my typing sabbatical!

Your Friend,

Danny

In progress: November 23

Dear friends,

I have so missed you! This typing sabbatical has been so meaningful. I have made so much progress in my autonomous typing and it feels so huge!

It has been so exhausting to make new connections in my body. Not to mention that I have been fighting a cold that has been draining my body. But it is getting easier bit by bit!

My hope is to keep working hard on typing, while resuming more regular posts. It makes me so happy to connect with you all! Thank you for being my cheerleaders!

Your Friend,

Danny

Boo!

Happy Halloween, Friends!

I so love the whimsical and fantastical and spooky spirit of Halloween, as well as the idea of connecting with spirits of our dearly departed. I also love writing Halloween-themed poems each year. This is my 2022 Halloween poem, inspired by my late father, who used to say that he would be reincarnated as a tiger. I was happy to share it at last Friday’s Neurolyrical Cafe, and I am happy to share it with you all today!

Your Spooky Friend,

Danny

Boo!

by Danny Whitty

Are ghosts real

Or are we victims of

Overactive minds

And which is scarier?

*

I have never been haunted

By a ghost or ghoul or similar

But my dad’s spirit used to pop by

And it wasn’t as much spiritual

As one would think

But maybe he just lacked flair.

*

Would you haunt me

One day when you are

Not too busy in the various

Activities of the afterlife

If you haven’t been reincarnated

As that fierce tiger yet?