We are us

Dear Friends,

I am so glowing from Motormorphosis! Wow! I want to share a poem I wrote about how it felt to be in such an accepting community in person. This was my first time at a large public event centered on nonspeaking autistic folks, and it was such a space of understanding and comfort and peace to not worry about whether my dysregulation or stimming was disruptive. I could feel Tara also noticed it, and it was a new feeling to her too to not worry about how people would react to me! (She is normally only worried about my safety and people who are rude to me – she can turn into a real Mama Bear if provoked on my behalf!)

It was an unexpected highlight to the weekend, and I now hope that more events and spaces will evolve to be so accepting. Thank you to the amazing team at I-ASC and the amazing community of people who attended!

Your Friend,

Danny

We are us

by Danny Whitty

Among you all

There is a peace

Despite our bodies all so struggling

And it is a new feeling to my heart

New since I first realized I was different

My young self destined for a life

Of stares and shame and shushes

And we all the same in that

And we all so kind to each other

And we all united in accepting ourselves.

Catching up & my blue skies

Dear Friends,

Wow, it seems like it has been a long time since I have posted! I was so drained from an emotionally profound and physically tiring trip. It was so amazing, though, and I am so inspired by it.

I want to catch up with you all about so much, but today I want to focus on my ally, CRP, and wonderful older sister Tara. It was her birthday last week, and I was so glad to celebrate with her. She is my blue skies, and my soulmate, and my mentor, and my ocean and travel adventure guide. She has turned her life sideways for me in the past two or so years, and I am actually at a loss for words to describe her commitment to me. I want to share that she is a brilliant and accomplished person in her own right, a beautiful writer, an impressive researcher, an amazing teacher, and a uniquely compassionate person. I am so lucky to have her in my life!

A big next step to support Spellers like me is more programs and residential communities where spelling is supported through aides trained as CRPs and integrated into meaningful activities for growth and well-being. This would allow us to thrive without being so extremely dependent on our loved ones. It is so difficult to feel that I am holding someone as brilliant as my sister back from her own dreams and her own gifts to the world. She never makes me feel guilty for her commitment to me, and I know she finds it so fulfilling, but I know her dreams are not compatible with being my main support person all of the time. And my dreams are not compatible with relying only on my family.

This is a hard truth to face. I am so appreciative beyond words for all of the families supporting their nonspeaking autistic loved ones, and I hope it gets easier for all of us in the not-too-distant future. I am so excited to be involved in two initiatives to build such communities (Teva Community and The Ohana Consortium), and I am hopeful that our options for fruitful and more autonomous lives will keep blossoming!

So, I want to celebrate the amazing woman who has changed my life, and celebrate all like her! I wish I had better words to describe what she means to me, but as she often kindly reminds me, “it doesn’t have to be perfect to be good.” Happy belated birthday, Tara!

Your Friend,

Danny

The Father Land

Dear Friends,

Greetings from the Emerald Isle! I am so overwhelmed with emotions about this trip to my father’s homeland. It is a gorgeous country with a troubled and rich past. And it is a place of such spiritual depth. It is where my father grew up and spent his youth before setting off for opportunities and adventures abroad. I so wish I could ask him more about this time in his life!

It is also where most of our family lives. We are so isolated from family in the US, and it is a whole new feeling to be surrounded by a plethora of relatives. It is like finding a home that I hadn’t known about before. I first experienced this four years ago when we came here for our dad’s funeral. Now I get to experience it again with a somewhat healed heart. And I love it so much.

But it is also a lot to handle emotionally. I am realizing that this extended home is subject to that same ephemerality as everything else, and some of my older relatives are showing signs of slowing down. Some of the younger generation are leaving for the same reasons that my dad did several decades ago. And I am just passing through and just a bystander to all of this. And it leaves me feeling a bit adrift.

I have been a lot more dysregulated than I generally am when traveling. This is an unpleasant surprise, and I don’t know why I am struggling this trip. But it is another layer of complexity in how I feel here. And I guess it is a learning experience in how to handle dysregulation while traveling.

But I am so thrilled with this trip as a whole. It is amazing to see more of this beautiful country, and beyond amazing to make new memories with my family here. I also got to meet some local Spellers, and that was so inspiring to me in my goal of helping to build the Speller community here is Ireland one day. And I am so feeling the love of my family here, and that also inspires me to be involved with the Speller community here. I will share more photos in the coming days on social media.

Now I am in an adorable coffee shop in Galway. We will drive back to Dublin today and visit my father’s grave. And we will spend more time with family there. I am so grateful we could make this trip happen!

Your Friend,

Danny

A chat with my main CRP and ally: separation, autonomy, and opportunity

Dear Friends,

I hope you are all enjoying your weekend! I am having a lovely day with my family. My sister and main CRP Tara leaves tomorrow for Ireland and will be there for ten days before the rest of us join her. This is the longest we’ve been apart since we gained fluency just over two years ago. It feels so long!

I asked Tara to record our chat about the feelings that arise from this (see below; transcript will be added in a few days).

It was so scary and stressful to think about being without my main way to communicate, and also made me feel so acutely that I can’t leave on adventures as easily as she can, as much as I dream of it. She has been so responsive to my concerns, and she helped me see the opportunities and accept the reality of my situation while remaining optimistic about my future. And she arranged for the rest of my support team to take over key roles while she is gone. And now I feel more empowered to take on this challenge as an opportunity for growth and for strengthening my connections with my other CRPs.

I am so excited to travel to Ireland and see my family there for the first time since my dad’s funeral four years ago. This will be my first time able to communicate with them, and I am so thrilled that I can talk with them now! And I am so looking forward to meeting some Spellers in Dublin. This will be a momentous trip!

I will not be posting much, if at all, until I arrive there. I look forward to sharing my trip with you all!

Your Friend,

Danny

Leo in Bloom: Blooming Again!

Dear Friends,

I am so thrilled that our project Leo in Bloom has been reborn as a platform to feature nonspeaking autistic voices, with a new theme every other month! We just wrapped up our first month in this form, on the theme “Advocating as Nonspeaking Autistics.” It featured contributions from several of my impressive and wonderful Speller peers and friends, as well as guidelines and social media accounts to follow.

You can read my review of this issue here and visit the whole website here!

We will resume in July. I hope you are all having a good start to the week!

Your Friend,

Danny

The universe is learning

Dear Friends,

I wrote this poem yesterday to try to sort through my feelings and swirling thoughts. It helped to share with my friends at Neurolyrical Café this evening. I share them with you now.

Your Friend,

Danny

—

The universe is learning
by Danny Whitty

I.
What the world is coming to
Coming from
And going to
Will it ever arrive
Anywhere and will
We know?

II.
Are you ready?
Ready for what
And when
And why are we
Needing to be so ready
When there is so much
That we cannot
Possibly
Anticipate?

III.
There are two dogs
Draped on the couch
And across the rug
Snoozing in utter contentment
Contorted in odd poses
And so vulnerable and so dependent
But so trusting all the same.

IV.
Bells ringing with the breeze
The loud wind chimes and
The small bells she brought back from Myanmar,
Made for temples but given to her
By someone she used to love
He hung them so nicely here
A rearrangement of how she had placed them impromptu
On the clothesline
Before our father’s wake.

V.
There is an elementary school down the hill
The traffic of cars to drop off and pick up
Is irritating most days
And the idea of being trapped by a child’s schedule
Horrifies her
And we find children to be loud and so needy
In the abstract
But my heart knows they are treasures
Hope and dreams yet untarnished
So vulnerable and dependent
And what do we do with that?

VI.
Time is so slippery
At least in this direction
And I don’t quite understand it but
It flows in all directions
And so somehow do we
And all we can do is
At once so small
And yet so immense.

Happy Earth Day!

Dear Friends,

Happy Earth Day! I am so eager to share my love and wonder for our amazing planet!

A big part of my journey over the past two years has been getting to know Mother Ocean more deeply. But even before that, I have always found solace in nature. And many of my peers in the Spellerverse do, as well. I am so in awe of the beauty and connections and ephemerality and yet endurance of nature.

And I am in awe of the connection my heart feels to it. I am a part of nature, as are all of you. We cannot save nature if we do not save our humanity. The same systems of thinking and working that most hurt nature hurt us too; commodification, disconnection, and lack of mindfulness.

I am so wanting to elaborate more, but I am so low in energy this week. I am so feeling gratitude for this wonderful world, and the opportunities I have had to get to know it. And gratitude for those working earnestly to save it.

Your Friend,

Danny

Communicating with My Most Precious Person

Dear Friends,

My mom and I had a huge breakthrough today in our Spelling to Communicate partnership! It has been a long journey, even though I absolutely love her and want nothing more than to be able to communicate fluently with her. Communication is a complex and mysterious phenomenon in many ways, and I don’t even fully understand why some people are easier to spell with than others. It relates to trust, confidence, and a certain chemistry that my brain somehow picks up.

I think with my sisters, I have a close and strong connection, but not the same sort of pressure to make them proud. And sibling ties are not as loaded as parent-child ties. My mom has shown me so much love and care in my life, but she is still an authority figure. As she should be. But I wonder if spelling with parents is a bit more hard because of this.

Also, she is not a native English speaker, though she is fluent. She has told me that this makes her lose confidence in her ability to follow my words. And that nervous energy throws me off, too.

She grew so disappointed in herself as we kept being stuck in our spelling. She seemed to feel like she didn’t deserve to spend time with me. Our relationship grew even stronger when she remembered she doesn’t need to be fluent with me to have meaningful experiences together. She dove into finding documentaries and books we could enjoy together, and she and I started my Japanese lessons, where she felt absolutely confident on the letterboard.

So I think this helped us cultivate our communication mojo, so that when we had a session today with Dawnmarie at Transcending Apraxia to nudge our fluency forward, we absolutely kicked butt! Dawnmarie is so amazing and guided my mom so expertly, and my mom was so able to take that guidance and run with it. The most helpful tip was for my mom to reframe her anxiety into curious excitement. It was so amazing to see the difference it made to our spelling dynamic!

I wanted to share this because I am so proud, but also because I know of other parents who are also struggling like my mom was. Remember that we still love you and that your company and interactions with us are so meaningful even without fluency. It is not a reflection of your love or our love when it is tough to communicate.

Though my older sister is my main CRP and a hero to me, I will always appreciate the absolute love and devotion my mom has shown throughout my life. I am so thrilled to be closer to communicating fluently with my most precious person!

Your Friend,

Danny

A New & Empowering View of Myself

Dear Friends,

Today is my 2nd anniversary of being fluent with Tara! And I want to mark it by sharing an important shift in how I view myself.

As many apraxic folks do, I have long struggled with my body. I came to view it as an unruly opponent, an obstacle to all I wanted to do. I felt trapped as it reacted to anxiety and stress, a passively afraid mind in a disruptive body.

But after several months of working on my mind and motor, through therapy, occupational therapy, mindfulness practice, and trying so many new things with my sisters and friends, I started to notice a shift in how I feel about my body. I felt really proud of it! I saw that it can do a lot if taught the right way. And I wanted to be kind and loving with it, to take care of it and appreciate it.

It is not easy to take care of my body with my compulsions, especially with food. But I am trying to work on that by setting myself up for success through asking my family to assist me in healthier habits and practices, like no tortilla chips at Mexican restaurants, cutting my meal into portions and putting part of it in a takeout container at the start of a meal out, not baking as often at home, etc. And I asked them and my support team to help me build an exercise routine, and to help me practice motor skills that are tough for me.

All of this has boosted my confidence, in my body, my mind, and my sense of agency. I know I can do so much more for me than I ever suspected, and that my disability is not as limiting as I had assumed. I know I will always struggle at times, but I feel more empowered in that struggle. I also know that many of my peers face more significant motor challenges, and I am not broadly representative of nonspeaking autistics in this regard. But I am so hoping that my shift in perspective is helpful to someone out there.

Here are photos of me working to love my body. And yes, that includes the occasional cheeky pastry on a lovely outing 😉

Your Friend,

Danny

A Weekend of Building Community

Dear Friends,

I just had the most amazing few days with the community behind Teva Community! We worked with several awesome volunteers who shared so much energy to renovate cabins for our camp. Everyone helped in their own way – clearing debris, organizing food, building and installing the interiors! I was a bit sad my body doesn’t let me do physically tough tasks for long, but I was happy to sit and hang out with my speller friends!

This was a tiring but fulfilling trip. It feels so momentous to be a part of this exciting community for people like me and my peers! I hope many more initiatives like this come in the near future. It gives us and our families so much hope for our futures, and expands our view for what is possible in our lifetimes!

I felt so loved and supported by this group, and I am excited to see how this community grows.

Your Friend,

Danny