My Thoughts

Dear Friends,

Well, I think some of you might not like what I have to say here. I know I once stated my desire to keep this page apolitical. That has been mostly what I have done. But it is hard to do so when my identity and existence and needs are entangled in political narratives.

This poem is a peek into my reaction to RFK Jr.’s speech, though it was a little while ago. Please read it from the perspective of someone who cares about me. I am not speaking on behalf of all nonspeaking autistics. I am speaking for me.

Your  Friend,

Danny

To us who are hopeless, by Danny Whitty

Our plight is often taken
From us and our hands
From our mouths
That can't talk
Because our existence is
So painful
For others to witness
We are a cautionary tale
But we still exist in the world
And being an example of something
Dreadful
Is no way to live
And I am struggling to say
That I am flawed I am defective
I am so trapped in this disabled body
But I am not to be
Used as an example
To justify the
Rampage against science
Even if that science hasn't served me
To justify or distract from
The threat to
What I need to lead
A life with my limitations
And I want to reclaim the conversation
Or rather claim it anew
Because you never included me in it
In the first place.

Out of Control

Dear Friends,

Wow, I have had so little energy lately! The pain and healing take a lot. It is so draining. But that doesn’t mean that I have been calm. I actually have had tremendously explosive dysregulation. It is what caused this injury in the first place. And it has continued into my recovery.

I don’t know what is driving it. It is more intense and angry than before. Yet it is more intermittent, allowing me some respite in between outbursts. This is new, around a year or a bit less. The power of the outbursts is frightening. Yet I am relieved that my dysregulation is no longer as uninterrupted as previously. So it is both worse and better.

Last week was bad. I went to such intensity in my shouting and stomping and running. It was unbearable to be around. I hated it. My poor mom was ragged trying to coexist with it and trying to help me. The dogs were so scared. I hated myself.

Then it passed over the weekend. I am not sure why it started or why it went away. That uncertainty is so frustrating. I am so wanting to better understand this all, but it is so complex.

So I am so doing better this week so far. I am still in pain but less so. I am sharing a photo from a good moment on the beach. This was a calm few hours in between really bad dysregulation.

Wishing you all more energy than I have!

Your Friend,

Danny

For my dad

Dear Friends,

I am coping with my arm, but it is such a drain on my energy. It is a lot of work to heal I guess. Thank you for your continued supportive messages.

It was recently the seventh anniversary of my father’s death. It is astounding to me how it has been so long. I am so surprised by how  I am no longer drowning in grief. But I sure miss him.

I want to say that he was not always kind to me. He did not understand so much about me. He was misunderstood himself. I think he needed more kindness in his life. But he still had so much love to share. He had a sparkle and joy and hopefulness to him. I think I have those from him.

I regret that I could never have a real conversation with him. That is one of my biggest regrets. That hurts me to this day.

I am so hoping he is proud of me. He adored me when he was alive.

I wish all nonspeakers could have a chance to share their words with their loved ones.

That is it for today. I hope you are having a good start to your week!

Your Friend,

Danny

On regulation

Dear Friends,

Well, an appropriate time to share our next All Our Brave Hearts episode, on the topic of regulation. I am very unhappy and uncomfortable with the broken arm. So these thoughts on regulation are timely, even though we recorded this three weeks ago.

Read and/or listen here: https://allourbravehearts.substack.com/p/ep-22-the-work-of-regulation

You can also listen on Spotify or Apple Podcasts!

I am so buoyed by your messages of sympathy and encouragement. Thank you to all of you! It helped me feel better as I awaited surgery. The surgery went fine, and now I am needing to accept that it will be six weeks before I am healed. It will get easier, but I am in a sad and frustrated state of mind for now.

Check out our new episode and let us know what you think!

Your Friend,

Danny

Oops

Dear Friends,

Well, bad news. I broke my right arm very badly. It hurts so much! Wow. I will have surgery on Saturday. It seems so far away.

Fortunately, I am able to spell with my left hand. A newfound skill that I hadn’t know I had, but I am sure glad I do. What a relief that I can communicate among this mess.

All this happened because I was dysregulated. I was sprinting around the parking lot of my day program and I tripped and landed on the curb. I passed out from the pain. My aide and the day program called 911 and I was rushed to the hospital. My family met me there. I felt so ashamed that my dysregulation created this mess. And I was in so much pain.

It was 10 hours in the ER. They gave me strong pain meds so I could sleep. They also had to sedate me to put on the splint. What a process.

Then I had to go and take off the splint at 4am. I was so in turmoil as my compulsive body tore it off even as I tried to stop myself. Tara woke up and realized what I had done, and we all went back to the ER. I felt so awful for putting my mom and Tara through this. I was filled with self-loathing and pain as we waited hours to be seen. How awful.

That was this morning. I am miserable and uncomfortable, but learning how to adapt. My mom sewed my splint bandage shut and Tara loosely wrapped tape around the edge to try to prevent a repeat performance. My friend Austin came by for a spelling session with Tara, and wrote me a lovely poem of commiseration. He totally gets that my self-loathing over my apraxia is so strong as I process what happened, on top of the pain. That helped my spirits.

I am so in need of your good energy in this tough time. I am so down and sad that this happened, and the pain is hard to bear. Spelling this helps me not focus on it, but I am too exhausted to keep spelling now.

Your Friend,

Danny

[note from Tara: he instructed me to share these photos, so these are all posted with his permission]

It is spring

Dear Friends,

I am so marveling at the spring blooms and longer days. It is like a wonderful awakening. My mom has made the gardens flourish. I love it!

I am also entering a new season. With my new aide and day program, I can spend time away from the family and the house. It is so empowering! It has helped me reflect on what I want from my day to day life, and I have decided to slow down. I am so ambitious and driven to build a career for myself, and to make up for lost time. But it was getting stressful. I am realizing that I have to rest and also enjoy myself more. I hope to have many years ahead of me for my big schemes. But for now, I have so much to enjoy and savor. Time with my mom. Time with friends at the day program. Time in our new home. Time with Tara, not spent laboring at multiple projects. Time with other family and loved ones, including the dogs.

This is a relief. I am still pretty busy. But it feels less frantic. And it is so exciting to reach this mindset.

This is also good for Tara. She has so much she wants to do for her own fulfillment, and she is so talented and deserves to have more time to focus on her dreams. We hopefully have more decades together, so we can pace ourselves a bit better. I am so excited to see what she does!

And my mom and I have developed so many new routines together. We are having so much fun. This is wonderful.

The past several months have been turbulent with changes in my life and the world. This is what the Year of the Snake portended. But now in my family, things are calming down a bit, and our new seasons are blooming.

Your Friend,

Danny

To My Mother

Dear Friends,

Happy Mother’s Day! This is not a sufficient way to honor mothers. It is not enough to applaud them with flowers and meals once a year. Mothers are chronically undersupported and underappreciated. Our society treats mothers with such entitlement and neglect of the basic needs that would make their lives easier. I am in awe of the mothers who endure this and I am outraged on their behalf.

That said, my mother is my angel. So I will take this inadequate day of acknowledgement to publicly express my appreciation.

She is my heart’s safe space. She has been my main person my whole life. She is my most precious person. I am so full of love and gratitude for her.

The chance to finally tell her all this when Tara and I got fluent five years ago was one of my greatest joys. She never wavered in her search for a better life for me. Even as my sisters grew weary of the hope turning over and over to heartache with each failed therapy to help me, my mom kept seeking. That determination is the most profound expression of love I have ever experienced.

Now we are growing together. It is a beautiful chapter in our shared lives. We learn new things together daily. We have so much joy in our routines and intellectual explorations.

Mama, you are my most. Thank you for loving me.

For you all, I wish you such love in your life.

Your Friend,

Danny

Absolutely Most:

note: Danny wrote this song in 2021, with his songwriting mentor Brian Laidlaw. It was included in the album Silently Loud, along with other songs by speller songwriters. It’s on Spotify (https://open.spotify.com/album/1oQXUjZJWFreeEbH9rzkdr?si=0tw6NkK3SByj0-9Xk0jyog) and also for sale at Unrestricted Interest (https://www.unrestrictedinterest.com/reading/p/silently-loud-compilation-album)

I am better a bit

Dear Friends,

Thank you for your kind concern. It is so appreciated! I love this community.

I feel a bit better. Still on edge, but able to rest more. Still prone to sudden outbursts. But less volatile.

I am feeling that my body is out of sorts. I wish I could better control how I act and that discomfort weren’t such a trigger. But that is apraxia for you.

I am working on diminishing my self-loathing during such times. Wow, it is hard! It is so much work to simply be at home with oneself. Why is that?

How are you all working to be kinder to yourselves?

Your Friend,

Danny

Under the Weather

Dear Friends,

I am having an awful time. I hate that this happens and that it is still not clear why. It is the bane of my life.

I am so full of angry energy. The shouting and slamming things and compulsions are so distressing to me and my family. The dogs are terrified. This is awful.

This is a real part of my life. It is a real part of my family’s life. I hate it. Especially I hate stressing my mom. She endures the most of it.

There is no magic treatment. So I am always thrown into uncertainty over when I might feel better. That is the hardest part: not knowing when this turmoil might end.

I suspect the weather is somehow behind it. It is so hard to know but it is a possibility because I feel off in my body when the weather is like this. Who knows?

I will be okay. I always come through. But it is awful to be in the throes of this dysregulation.

Your Friend,

Danny

Reunited

Dear Friends,

Tara is back! My heart feels so happy. I really missed her. It feels like sunshine to see her again.

This month has been good. My aide and I have made great progress spelling. And I had some fun outings with my little sister. And my mom and I have been making our home more homey. That has all been so nice.

But I have been so unsettled. Yesterday when Tara arrived, I felt so serene! It was like contentment washed over me. I loved it!

Today I am restless again. I hate it. It is so frustrating. It is hard to stay focused on anything. I wish I could settle down and hang out with Tara. But I am too jumpy.

This is baffling. But I guess that is just part of my disability.

I have also missed posting on social media. I can actually feel more regulated when I spell. So writing this helps me calm down and allows me to say hi to you.

I hope you are all doing well. I am looking forward to posting more soon!

Your Friend,

Danny