About this Father’s Day

Dear Friends,

I hope you all had a good Sunday! I wish a belated Happy Father’s Day to all the dads and dad figures out there. I also wish those without a present father figure a lot of peace and solace if this was a painful day.

This was the fifth one since my dad died. And it was the first one where I decided to not strive to observe it. It was the first one where I acknowledged and accepted that I was too sad to do anything for it. And it was bearable to face the sadness. This felt so freeing!

I love my dad so much. And he is in my heart always. And it is time for me to trust that I don’t always need to try to process this grief. Sometimes I can just let it be.

This is the poem that I wrote about this.

Your Friend,

Danny

THIS TIME I AM, by Danny Whitty

For this all this
Since then
I have
Striven
Driven to be
Somehow in control
Though I knew it was never
Possible
But I wrapped my tender self
All around
With armor of effort
Flailing or later calmly
Swimming swimming swimming
Sometimes all so totally
Fine but still swimming
And I think it is time
To stop a bit
To climb onto a bamboo raft
Lie out in the sun
And see where the current takes
My all so
Tired self.

Siblings Connecting

Dear Friends,

I have been pretty good and happy lately, but a bit tired! But I wanted to share this podcast interview with Diana for Beyond Awareness: Disability Awareness That Matters. She has a Speller brother who is also an “older” adult, and they live next door to each other in San Diego. So it was so special for me and Tara to chat with her!

Here is the link!

I felt like we made a good friend. I hope to hang out with her and her brother soon. I appreciate these chances to share my experiences and perspectives, and to meet new people!

Your Friend,

Danny

Another Update

Dear Friends,

Today was the orientation for a new program that I am part of: Disability Voices United‘s Self-Advocate Speakers Bureau’s training! I am so excited to learn more about changing systems through public speaking. And I love that a diversity of disabled folks are included.

It made me think of those days in special education. That is where I first mixed with people with different disabilities, but it was in such a demoralizing and dehumanizing context. And now I am in this advocacy program with others who have been marginalized and who now are ready and supported to become powerful advocates. Such a contrast!

I am so excited to learn from this program! And to meet other folks from other disability communities!

Your Friend,

Danny

Gloomy Days but Sunny in my Heart

Dear Friends,

It has been far too gloomy and gray in San Diego lately. I am so ready for baking hot summer! But all the same, I have felt so hopeful in my heart. After the last round of dysregulation, I have come back more strong and resilient. And I am so excited for things to come! This includes Motormorphosis in late July, for which I will be on panels with Fidgets and Fries’ Tiffany Hammond, Nigh Functioning Autism’s TJ, and of course esteemed Spellers such as Gregory Tino. And I am of course excited to socialize in person with my people!

And I am finally working on my next passion project. This is an essay that I hope to publish somewhere with a broad audience. And I am going to be teaching part of Spellers Center summer school in Carlsbad. And I surfed for the first time in months last week. I am so feeling that the year is unfurling gloriously.

Of note: yesterday was the fifth anniversary of my dad dying. And though it was sad as always, I felt much more resilient this time. And I feel he is somehow proud of all I am doing. I would normally write a post about him to mark this anniversary, but I feel like keeping it more private this year. I just want to say how much I love that he would be proud.

And this is my rambling update for now. I hope you all are finding moments of sun, literal and figurative, and feeling pride in all that you work to do.

Your Friend,

Danny

And it recedes

Dear Friends,

As always, and as I knew but had a hard time remembering, the dysregulation storm has passed. The river floods and it recedes. There are tides and seasons.

I felt so low, so discouraged, so very frustrated that my hard work to strengthen my regulation seemed in vain. But now I can more clearly see that there has been great progress, and that my bad bad bad days are fewer. And my recovery is faster. This will be a lifelong process. And that is okay.

These days are so full of effort and hope and worries for the future. I am so absolutely and completely appreciating this challenge. With communication, I can truly see a path to a better life, and though that path is arduous at times, or really most of the time, I am so eager to pursue it. That is all for now, because my dear friends Jeremy and Chantal just arrived for a coffee shop hangout!

Your Friend,

Danny

The River, i.e. Madness

Dear Friends,

Whew, I had the worst couple of days! Such intense dysregulation. Wow. My throat is still sore from almost continuous shouting, and my body is so very exhausted. My compulsions were so strong. It was so scary! And so disheartening, too, because I had been so proud of my progress in my regulation. It was among my worst experiences being dysregulated. But at least it was short and I feel better now.

I wrote this poem yesterday as I was still in the grips of it. I am so grateful I can still spell when dysregulated. It helps to be able to express my struggle. I am so thinking of my friends who also struggle with this.

Your Friend,

Danny

Madness

If I ever entertain the notion

That I have, through
Sheer hard work and mindfulness and

Wanting it all so all so all so

Much,

Found my way to calm

Stretches

With sandy white banks sloping gently
And languid cicada hums hums hums

Ripples fading softly
And warm humid all around

Me,
And I allow my all so worn out self

To bask bathe breathe

Always I should note:

The river floods.

by Danny Whitty

Flowers Once Again

Dear Friends,

I want to advise that this is an emotional poem. I realize many of my poems might elicit strong feelings of sadness, so I am going to be more mindful in presenting them.

So. This poem. It is about five years since my dad was put on life support after weeks sick with the flu. It was such a difficult time, in between hope and despair. I always thought, each day coming home from the hospital, how he would love the flowers blooming along the walkway to our front door. I know Tara thought of him admiring them upon his return home. But he never returned, at least not in his physical form.

So each late spring, the fragrant jasmine and roses bring a sweet sadness to our hearts. But it gets easier each year.

Here is my poem on this. It is for Tara as much as it is for me.

Your Friend,

Danny

—

HOW ARE YOU THESE DAYS, by Danny Whitty

So we somehow came this far

The way and the how obscured
Among weeds and wildflowers

The jasmines are all enchanting us again

And those roses also

This is the first time
Since then

That I can smell them absorb them

Without my heart

Splitting open

And flooding onto the walkway

That your feet
Never returned to.

Antsy

Dear Friends,

It has been a little bit! I have been so struggling to sleep lately. It is so weird. My body feels so restless, but also is very calm. Like a quiet storm. It is so unusual, but it has been going on for a week or so now, maybe two weeks. I can’t get my body to sit or lie down for long, unless I am actively engaged in something. We have tried magnesium, zinc, iron, CBD and CBN, valerian, melatonin, and more. I finally requested ZzzQuil, a big step for me because I don’t love what Nyquil and similar do to me, so I have always avoided them. But I was desperate. It helped a little, but I was still wandering around like a ghost all hours of day and night.

I have no idea what the trigger is. And it is so frustrating. I am so rundown. Oddly, my motor skills are sharp, sharper than usual. Like my initiation and autonomous actions are so strong. But my OCD is also strong. So I don’t know what to make of it. That and also all of my goals that I can’t work on because I am so tired make me feel so frustrated.

Here is one of the poems I wrote about this today. I am not seeking medical advice, though I appreciate the desire to help. I just share to give my feelings some air. And to share what it is like in this autistic and apraxic body.

Your Friend,

Danny

ANTSY by Danny Whitty

I am full of ants

In my bloodstream

Streaming streaming streaming

And then some in my nerves

Twitching twitching twitching

I am a pile of ants

Swarming swarming swarming

And we are a colony

Driven to a purpose
That we know nothing of.

Carrying on the legacy of Nick D’Amora

Dear Friends,

I am so saddened over the loss of Nick D’Amora of CrimsonRise. I never met him but know many of his friends. And I feel like we Spellers have a strong bond despite distances that separate us. We feel each other.

He did so much with his time. He changed the world for many nonspeakers and their families and community. He is a hero. And it is so unfair that he had to go. So absolutely unfair.

I hadn’t known until recently that many of my peers have seizures. This also took the life of Christopher Finnes recently. And I am in awe of my friends who deal with epilepsy in addition to autism. I am so absolutely and profoundly feeling for them.

It makes me so angry that more research and work is not being done on the conditions and struggles we live with now. It is all fine to study the causes of autism, and I see why people do that, but what about the millions and millions of us who are autistic now? Do our medical issues, many of them chronic and severe, not warrant more research? Do we matter less than preventing, somehow, more people from becoming autistic? Do we have to suffer because we are inconvenient and marginalized?

At the heart of this is realizing how vulnerable and precious our lives are. And how it hurts to lose someone from our community when he and all of us had to work so hard to get where we are. I am so hoping his memory is blessed by us all working to make this world better for nonspeakers. Please consider supporting this campaign to continue his legacy.

Your Friend,

Danny

—-

From CrimsonRise:

Join Barbara Pandolfi D’Amora and her family in fulfilling Nick’s beautiful mission in life.

He cofounded CrimsonRise. As our cofounder he advocated for two things.

– To reach every speller out there.

– To build a place for spellers who have become fluent. An organization that is a prototype of what spellers do when they lead and build their own organization.

Please join this incredible campaign.

On Independence and Resilience

Dear Friends,

I want to share so much today, but for now I will post on the ideas of independence and resilience. I think many of us with autism and apraxia feel that these are far-off if not impossible ideals. After all, we rely on outside help to do so much. And our bodies and minds seem to go haywire in ways we can’t explain or understand. We focus more on the notions of autonomy and interdependence, which are so important to our well-being and frankly to a vision of a better world.

But Tara said something today that resonates with me. She acknowledged that I have had to do so much on my own. Much of my early life, especially, I was alone in sorting out my realizations that I was different and disabled. Despite having a loving and supportive family, no one coached me through what I was experiencing internally and couldn’t express. No one helped me digest and accept each new realization of how constrained and hopeless my life was. And I have been the only one to know what I was really going through.

And it was so bleak most of the time. But I managed to cope. And I found ways to be resilient, on my own. We nonspeakers are so strong and so resilient, and we keep trying and hoping and living through the immense challenges we face. Each thing we struggle with is not a weakness only, but also a profound strength. And much of that struggle, we cope with internally on our own.

Yes, a strong support system is vital to our well-being. But we should be aware and proud of how much we manage totally on our own. We are independent and resilient in many important ways. I am in awe of all of us.

Your Friend,

Danny