More Storms

Dear Friends,

I appreciate your kind comments. It helps me in my heart. Thank you.

I get the sense that many of you are similarly struggling. Let’s try to ride this out together. I am so feeling for anyone else who is going through a tough time.

I am wanting to address some questions I know people have regarding my communication. This will be fun. I am so annoyed by skeptics who pose such questions with smug authority even though they have no clue what they are talking about. It is all so embarrassing for them. But they don’t realize it yet.

1. Can you explain why someone must be holding the board?

That is actually a good question, but is usually asked aggressively. There is ongoing research into the relationship between speller and Communication Regulation Partner (CRP), but at the moment we don’t know for sure the mechanisms behind why it is easier to spell with a handheld board. What I can say is that many of us progress to independent typing, with the keyboard on a stand. We still need a trained CRP with us to support our regulation. So if you can see that many spellers end up not needing a handheld board, why do you persist in asking this question as if it discredits the whole method?

For me, it is much less exhausting to use a handheld laminate than a keyboard on a stand. I suspect it relates to an emotional connection with my CRP. I feel more safe and supported and less alone. That helps so much. But I challenge you to see me spelling with Tara and to find any possible way she could be “puppet master” controlling where I point.

2. Why make someone dependent on a CRP? That seems like it denies them autonomy.

This is so stupid.

How to start… Hello, I can’t control my body! I am stuck in apraxia. I need support to communicate in a reliable way. My options are to work with a CRP or not communicate. Communicating independently is simply not an option.

Does sign language limit deaf people? Do wheelchairs limit those who can’t walk? Does anyone have a tried and effective approach to help nonspeaking autistic folks communicate independently?

No. No. No.

Spelling works better than any option available to me. It is not making me dependent on a CRP. I am inherently dependent on support to do many things, because that is the nature of my disability.

3. How could these spellers possibly be capable of writing the things attributed to them? They can’t be that smart without education.

Jealous much?

I am so annoyed by this. But an easy answer is: We are super sensitive to our surroundings, and that includes hypersensitivity to inputs around us. Many of us have super acute hearing. We can take in words on a page in seconds. Our brains are processing powerhouses. That is the truth.

I am a sponge. So despite being denied an education in school, I learned from observing the world. And my parents educated me. Reading advanced books, teaching me up to calculus even before knowing about spelling, playing word games, watching documentaries and the news. That all helped shape my knowledge base. But the main thing is that my brain is just advanced. I am smarter than most people. Most spellers are. You don’t need to get upset about being less smart, because I would personally take somewhat lower intelligence if I could better control my body.

That is enough for now. Whew! Feels good to get that out. I am a bit salty in this post, but I need to get my feelings out there. This is cathartic.

Your Friend,

Danny