I am glad to share that we finally have “Nonspeaking, Very Verbal” shirts to sell! We decided to try Bonfire. It is our first Bonfire campaign, so please let us know how we can improve if needed.
I am so excited to get one myself! I look forward to seeing folks wearing theirs.
You can order through January 29, with estimated delivery by February 16. We will likely do more rounds if this seems popular.
I so appreciate any orders! My financial autonomy is a major goal for this year. I am proud to share this product with you.
I am finally feeling stable these days. I still have flare-ups of dysregulation, but it is manageable. I actually feel so optimistic! It is a good way to feel after weeks of turmoil.
I have some exciting projects and goals. I am so feeling motivated and energized by them. I think you will really love some of these ideas! But I am needing to do more scheming before any more specific announcements. The suspense!
My support team keeps getting stronger. They are so working to ensure that my needs and goals are supported while trying to avoid burnout. They are my all-so-loving angels. I wish it were easier.
My goals are ambitious. I am such a big dreamer. Sometimes, it is scary to dream. When my life felt hopeless, dreams were an act of distraction from my suffering. There was nothing to be lost by dreaming because those dreams had no hope attached to them. Now, I can hope. I can try. But that means I can fail. That is very hard to accept. I am not used to having the space to truly try and to risk failure. All that is still new to me.
Maybe that fuels my anxiety these days. I think it is an important thing to acknowledge. I am trying to be brave and resilient in a way that is new to me. It is hard!
I will try to learn that failure is a part of the process. It is a lot to learn! I am so lucky that my support team is able to help me dare to dream things that I actually hope to do. Not every nonspeaker has that.
I hope you are also daring to dream and that your hearts are brave in the face of failure. This will be an exciting year!
I am feeling more like myself these days. There is still a lot of energy to wrangle, but I am coping.
I want to ask if there are any women spellers who would be interested and able to contribute a piece to Leo in Bloom magazine for our February issue. Our theme is looking forward, gazing back.
We have an all-male lineup at the moment. This is not cool! I am not wanting to ask my usual list of awesome woman speller friends, because they all tend to be busy and have already contributed to other issues. I am wanting to feature new female voices!
Please send me a message if you know a possible contributor.
I am so needing to learn more about different gender identities, though I know enough to realize that this strict binary of “male and female writers” is not inclusive enough. I appreciate your patience with me as I learn. Of course, we welcome contributions from nonbinary individuals. I am interested to learn more about the perspectives of all!
Dear Friends, I am so grateful to have a wonderful community. You are all so kind and I feel your friendship. In the interest of keeping this an oasis of kindness online, I am establishing some boundaries (this is mainly for Facebook and Instagram):
This is not a platform for discussing the validity of my communication method. There are many resources available for those with questions about how Spelling to Communicate (S2C) and similar methods work. I don’t have energy to answer such questions repeatedly.
For those who want to defend my communication, I appreciate your impulse, but please refrain from throwing Facilitated Communication under the bus. Unfortunately, FC has been misused, but it is still valid when done correctly. I have several friends who use it.
No arguing or rudeness in the comments. Disagreeing is fine, but politely.
I have my own political convictions. I choose not to share them here, even if they are important to me. This is not out of apathy or cowardice, but because this is not the place for that. I appreciate you doing the same.
I am happy to answer what questions I have energy for, if asked in good faith. I will not dignify skeptics in sheep’s clothing with my energy. Again, I and many others have already spent time and effort answering questions on our communication. Don’t be afraid to ask if you are genuinely trying to learn, but I can’t guarantee an answer here.
Thank you for respecting these guidelines! I am only responding to a few incidences of skeptics infiltrating this beautiful community, so don’t worry – I am not fielding hordes of disrespectful comments and questions. You are all mostly fantastic! Thank you for being here with me.
Happy New Year! Wow, I am excited to meet 2024. I hope it is a kind one.
One big goal I have is to become a hired public speaker. I know, a bit counterintuitive for a nonspeaker! But great public speakers who are nonspeaking are already out there. They are making things happen. And I want to be one, too.
I have already had some gigs. And I loved them! I am so a public persona. I want to reach many and share my ideas and care. I am such a Leo!
I went through the Self-Advocates Speakers Bureau training with Disability Voices United recently. That improved my confidence that I can do this!
So this is me publicly making a commitment to this goal. I am particularly interested in audiences that work with disabled people but might not yet be mindful allies, and audiences that know very little about disability. Of course I also love speaking to families of nonspeakers!
If you have ideas or connections that might help, please share! I am determined to get my ideas out farther this year. And I also am determined to earn money this year. This is a big dream for me!
I am also trying to be more vulnerable about sharing my hopes and dreams. This is my year to hustle!
Thank you all for being such a supportive community. I am so lucky to know you! May our goals be achieved this year.
A year closing, another emerging. It has been a tumultuous ending to this year. But I am able to appreciate where I am. It has been a full year! I am so proud of another year of growth and advocacy. And a year of visiting family, to the west and east, with all sorts of new beautiful memories with them. A year of selling my first poetry chapbook and starting my online store. A year with friends online and in person. A year of reaching open communication with my mom. A year of fun outings with my sisters. A year of so much restlessness and a community to support me through it. And what more could a year really hold beyond all that love and struggle and striving and joy?
I felt so much this year. I lost loved ones. I lost peers. I lost hope at times. And my brave heart still persisted.
I am so full of dreams for the years ahead. And I am sure I will fail to realize many of them. But I can’t allow pessimism to arise. I am an inherent optimist, like my dad was. I am going to keep changing the world. I am going to keep trying to go out on adventures and enjoy being out and about. I am going to find ways to help my body cope better. I am going to make more friends and grow closer to old ones. I am going to learn more and more that I am worthy of friends. I am going to play in the ocean with more confidence. I am going to write and move people with my words. I am going to find a way to be more at peace.
Thank you for being with me. All of you help me feel that I am worthwhile. I know I should not need external validation, but I think most of us need it as a step toward learning it for ourselves. I am so feeling that we are a beautiful community, and I look forward to sharing 2024 with you. Happy New Year!
Well, I have been having a tough couple of weeks. It has sucked! it is so frustrating that this disability is so unpredictable in its extreme swings. I don’t know why I am struggling, or what I can do to feel better. I am not seeking advice, because I have tried pretty much everything that people suggest. I appreciate any impulse to be helpful, but it is not needed here.
I wanted to share that I have still found small pockets of joy. Moments when my body was able to keep it together on some less bad days. I was able to enjoy an outing to the Hotel del Coronado and the San Diego Zoo, both decorated so festively. And a dinner out and holiday mocktails in one of my favorite San Diego neighborhoods. And today, I went on one of my favorite hikes with my family and dogs, an always empty trail in the mountain area with expansive views out to the desert. Then we enjoyed pie and a stroll in cute Julian town. I felt so free on the trail! And the pie place has a big outdoor seating area that was pretty empty when we got there, so I could dance and gallop around to Christmas music without being too stared at or disruptive.
I love the holidays. It is sad for me that I often struggle during them. But I hope that I will find more joy in the coming days. Anyway, Happy Winter Solstice! More sunlight is ahead. At least for us in the north!
I am having a miserable time with compulsions. I am so exhausted. This is the most compulsive I have felt in a long time. Super loud stimming and echolalia. Always rushing to do the next thing. Demanding breakfast at one in the morning. Grabbing my sister’s arm to take her phone. Shouting in my mom’s face.
My dogs are so scared of me. But they still try to stay near me. Their love is so achingly pure.
This is the worst aspect of my life now. I am so blocked in everything I want to do by this. Spelling helps, but I can’t constantly be spelling. Supplements are a mixed bag, with some maybe helping and then not working anymore. My mom spends so much time researching possible supplements online, and it seems so fruitless. I am so sick of this ruling my life.
I am trying to get into the holiday spirit, but I feel so run down. I hope easier days come soon. I hope you are all having a better time than me! Take care.
I am so moved by your responses to my last post. It is something we need to acknowledge: interdependence. I am glad so many of you get it.
Today I am particularly compulsive. It is always like this when I am tired. I want to share about a recent change to my letterboard. My trusted and battered old green one has been mine for years. It was given to me by Elizabeth Vosseller, who first taught me Spelling to Communicate. I cherish it!
But I was developing many compulsions on it. I was grabbing it from my CRPs, spelling out nonsense words super fast. I was compulsively spelling out sounds that people make, like “um.” If Tara said “okay” I had to spell it. I had so many tics on that board, despite Tara trying to prevent it. It was interfering with my communication.
So my mom and I asked Dawnmarie Gaivin at Spellers Center San Diego to help. She is so good at thinking of ways to support motor initiation and inhibition. The idea she developed for me was to transition to a new board for communication, but keep the old one handy so I could direct my compulsive spelling there instead of my new board. This avoids triggering my panicked OCD response to a compulsion being blocked, by redirecting it.
It is working so well! I have been using the new board for about two weeks. It is a transition for sure, but I am working hard with my CRPs to keep the new board clean of compulsive pointing. I am relieved that this helps. I still wish I could do away with all the compulsive pointing altogether, but I am glad for this improvement.
Remember, practice makes permanent! I needed to make a change in what I was doing because I was reinforcing these compulsive pathways. I am so grateful my team is able to help me with this!
I am so eager to share this realization: I am not a burden. But I need to believe it and trust my support team enough to be completely honest with them about my needs.
I don’t know why, but this year I started hiding parts of myself from Tara. She had done nothing wrong. In fact, she is a dream ally! We enjoyed complete transparency between us for a few years. But this year, I started closing off a bit.
I just started feeling how I was taking so much of her energy and time. I sensed how tired she was and how much she was juggling. I hated being part of her load.
So I started pretending I didn’t want to do things with her. I claimed I was too tired, even when she double-checked with me. I lost my joy from this. She finally confronted me about this, and I admitted I had been dishonest because I didn’t want to be a burden. She was kind about it, but also a bit hurt that I would be so dishonest with her. She said “our relationship is one where we have complete transparency and I rely on you to be honest with me so I can better support you. I will tell you myself if I am too tired to do something. You don’t make that decision for me.”
It was so meaningful to hear that. But I still am having trouble being honest about my needs. Last week, I played in the ocean with Shay. I got a bit chilled. Tara made sure I had warm water to rinse off with, and warm dry clothes, but I didn’t put on my fleece. We walked to lunch and ate outside. She checked with me if I was too cold. I said no both times. But I was! It would have been easy to warm up – the restaurant had nice warm blankets I could have used. But I was shy about expressing my need. It sounds silly now.
I got too chilled and started feeling sick later in the day. And dysregulation kicked in so intensely! I had been so calm for weeks, but this was one of my worst nights in a while. I was aggressive toward my mom and I hated myself so much for it. It took me a couple of days to calm down.
It was so pointless for me to not be honest with Tara about being too cold. I just caused real stress instead of allowing her to get me a blanket. She now knows to be more proactive and to step in when it seems reasonable to assume that I need something that I am not asking for. We don’t love this, since my agency with spelling is so precious. But it is where we are now.
I am feeling better now. Thank goodness! I am so confused by my shyness to ask for help even when I am asked if I need it. And Tara is so amazing as an ally and has not done anything to discourage my honesty. I guess I need to examine how I feel about being so dependent on support. It is complex!
I hope all of us find a place in this life where we can be supported and not feel ashamed of it.
Danny With Words 