Well, today is special because it is my sister’s birthday! Tara is my blue skies, my fierce sister bear, my soulmate. She is a loving force for good. She is so soulful and mindful. She is also pretty smart for a neurotypicalish person. I couldn’t ask for a better personal assistant, manager and agent, collaborator, and ally.
All my words reach you through her hard work as my CRP and her work to format and post according to my instructions. It is a lot of work. I love that she has so much integrity in centering me and my authentic words.
Happy Birthday Tara! Thank you for opening my life.
It has been a tiring week. But I want to share two poems that dear friends wrote for me when I broke my arm. They are also spellers and close to my age and they are in southern California. I so appreciated their instant compassion and their ability to speak to my feelings. Another dear speller friend also wrote me a poem, but I haven’t yet asked him if I can share it publicly.
So here are the poems by Austin Baker and Philip Lopez. Thank you, my friends.
Your Friend,
Danny
Sorry about your arm, by Austin Baker
The pain is obvious in a way The grimacing and stressed yells. The splint over swollen arm on broken bones Is painful to imagine Let alone inhabit. There is more to it, though, Isn't there? The self-loathing And frustration And wondering why You must cope With your difficult body The thinking that Your compulsions and Dysregulated nerves Trap you to Reckless movements and So much suffering I hear it all In your breathing Your stimming Your heart's sadness. It is our fate. It is awful, But better with you In my life And I hope To help you too.
-- To your tendency to blame yourself, by Philip Lopez
It is too easy To flood your mind With shame There is so much of it Our whole existence Is bathed in it Someone must be at fault For our inconvenient Bodies It seems There is power in blame I wonder if You could see Your body As nature As storms and glorious sunsets As waves and tranquil lagoons As millions of Birds Migrating throughout a world That people shaped Disregarding their pathways As my friend Whom I never blame
I am so thankful to you for your warm congratulations on my citizenship. I had a wonderful celebration with family and friends in our new back yard. The view was fantastic and the company even better!
But dysregulation is back at me again. I am staving off the explosive rage and running around, but it is such hard work. I am still stimming loudly and so compulsive. It is so exhausting.
I want you to know that I am almost always working to keep it together. Many people assume that nonspeakers are spoiled or tantrumming or just not aware that we are being disruptive. Let me set this right. I am fully aware that it is disruptive. I am not in any way willfully doing it. It is not an issue of discipline or respect or awareness on my part.
So I need you to know that I am almost always trying to stay regulated. It is a constant and tiring effort.
That is it for today. I needed to write a post to share and to do some purposeful activity to help me stay grounded. That helps in the moment.
Well, there is much to be disheartened by. The passage of that bill is so disappointing. Not surprising, but still disappointing. I am so sad and upset over it. It represents so much of what is wrong with this country, and its implications will be disastrous for many, including disabled people.
So that is heavy on my heart.
But I still feel like celebrating today. And a big reason is that I became a U.S. citizen on Wednesday! It was so emotional to stand up and take the Oath of Allegiance. It feels great to have this more secure status. I am so ready to vote!
There is so much work to do to make this country better. But it has a lot of good, too. And I am eager to be a more active part of this democracy.
I will celebrate with family and friends today. My first Independence Day as an American!
Thank you to Tara for guiding me through this process. We had the best day downtown to celebrate the occasion, with a cool coffee shop, riding the trolley, and lunch in Little Italy. We had planned to make a whole day of it because I love being immersed in urban energy. But we didn’t realize how much we would have to celebrate because we didn’t know I would be taking the oath that day. We thought I would just be doing my citizenship interview. The interviewer was so kind and we were so shocked and happy when she said I could do the ceremony right after.
I hope you all find something hopeful to celebrate, related to today’s holiday or not. Hope is not a luxury. We need to foster and guard it.
I am so moved by your responses to my last post. Thank you for receiving my words.
I am here to share lighter thoughts! It was my mom’s birthday this week. She is a sprightly seventy-six. I am so cherishing my life with her. We have a lovely home and routine. She is ever learning to support me better. I appreciate how she continues to grow in that way.
We had a lovely dinner and homemade cake at home, including our first time eating in our new backyard. It is ready to host parties finally! I look forward to many summer evenings with friends and family sharing food and the view.
I also am elated that my arm is healing well, and I could replace the huge unwieldy splint with a forearm brace. Still it will be weeks before I can get in the water, and I can’t do regular weight-bearing on that arm for a while, but I can take the brace off periodically and I can wear my stylish jackets once again.
It finally feels like summer is here. This has been a lovely summery week! I hope you are all enjoying the week too.
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.
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.
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!
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.
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!
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]
Danny With Words 