"Something special and revolutionary"

For this post, our spellers wanted to answer a few questions that they've gotten in response to their recent blog and social media posts. It turned into a far reaching conversation about communication, regulation, and their plans for the future of this amazing group; including, in Alex's words, "something special and revolutionary."

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Question: I follow all of your blogs and am glad to say I love to hear your

progress and how you committed yourselves to use AAC. I do have a question.

This may show that I am still learning about AAC. When you communicate

with others you are essentially spelling. However, are you able to understand

the verbal communication from others? Or do others that are nonverbal need

to spell to you so you can “hear them?” Rose…how do you communicate with

your sister and others? - Your friend…Santo

Alex D: I like the real honesty of this question. I see it like two different operating

systems. I hear the nonverbal communication of other nonspeakers and the

meaning is the same as what they spell but spelling is like translating to the

operating system of NTs [neurotypicals]. 

Chad: I know of no better system than ours. Love the term translating. It is a good description. I think everyone tends to think we either have no words or that we

speak in English in our brains. It is not so simple. 

Christopher: I always thought I was bilingual. I can understand English and

I can speak it with my letterboard but I don’t think in English. How smart am I?

Not really sure how to explain how I think but I like what Alex said about different

operating systems.

Rose: Thanks for asking this Santo. Sometimes it is hard to explain but like

Chad said it is not simple. I think in colors and feelings but not in full sentences.

It is only when I spell that I use sentences like this. I have to stress that the meaning

is the same. I think it really is like translating. Translating my thoughts to NT words. 

Alex D: Rose is an amazing advocate. She explained it so well. 

Rose: Santo I can feel my sister’s heart.

I know her emotions like I know my own. 

Matthew: I want to state as a non speaker I hear and understand everything.

I used to think it was a weakness because I am so sensitive to noise but it is a strength

to hear so much. Can you hear conversations in one room, the TV in another room

and every door that closes on the block? I can hear it all and take in all the

conversations at once. 

Sam: Deal has to be that people accept that nonspeakers are much more

observant than people think. My peers and I hear and see it all. 

Maudey: I understand everything but mostly what I say verbally is not purposeful. I can not control my speech. I practice typing and spelling every day. It is still hard. But it is not as hard as purposed speech.

Question: Why do you need someone to hold the letterboard rather

than putting it on a stand? - Anonymous

Sam: The most important part of trying to get my words out is regulation. I need to feel the confidence and calm of my partner to feel confident and calm myself during this difficult task. The letterboard connects us better. 

Jack: Good answer, Sam. I spell on a letterboard with my partner holding it and on a keyboard on a stand. Having the keyboard on a stand is way harder even though my partner is still next to me. I really need to have a strong connection between us. I need my partner to have excellent regulation in order to be regulated.

I need calm and stable energy to feel regulated. 

Christopher: Regulation may be a new term for some. It may be hard to understand but autistic people often live in the fight or flight part of our nervous systems.

That equals survival mode. Hard to communicate

when it takes all of your energy to exist.

I need a partner who knows how to calm my

nervous system so I can make my body cooperate.

Joe: I want to add that I need to feel regulated with my partner so we have coregulation. My partner and I can have different days but on the letterboard we have the same nervous system so we are connected

and I feel her calm. It is like that

with all of my communication partners. 

Matthew: I think connection is easier when my partner is holding the board.

I am certain it helps them to be more present with me. However when I am

having a good regulated day I need that connection less.

Then it is easier to type on the iPad. Regulation is everything. 

Question: How can we educate the world more about you guys?

My thoughts are via social media and also collaboration with heart centered

people to create possibilities for future direction.  - Andrea

Joe: I love that you ask but we may have different answers here. I want

happiness for autistic people. For me that means a place where I am understood and supported. Having that here, I am not really concerned with what the rest of the world thinks. I am good with our community making a difference for us. Making a safe

comfortable home for us is my priority. I argue that we make this community home. 

Matthew: I am thinking that definitely getting our words out is important. I am knowing

it is important. It is important so people can support nonspeakers in their own lives. 

Alex D: Guys you know I am a big advocate of advocacy. 

Maudey: My priority for this community is also to be our home base.

Home is the place you feel like your truest self. When I think of independence

I think of our community here.

Real community always supports each other like we do. I think we should explore ways to make this our home. 

Based on these comments, we spent an afternoon researching different communities of spellers around the world and brainstorming some ideas for

the future of our community here. 

Joe: I am excited for a brainstorm. I myself feel good about having a home with you all.

I do like the idea of a residence but not sure if I am ready.

Planning for the future is important. I need to know what I am working towards.

Excited to work towards something like a home base like Maudey said. 

Matthew: Such an exciting but scary topic. I think

we should be working to create something like this for spellers. 

Rose: I have hoped we would talk about this. I definitely want some kind of

living situation for spellers.

I am happy for us to create it ourselves.

It will be independent within community which is what all people really need.

This is what I have dreamed of for us. This is my community. 

Jack: I am ecstatic. Really that is the word, it is more than happy. Independence within community is the exact goal I have for myself. Happy we start planning now. You guys were talking about tiny homes. I like that idea. I want to work on researching tiny home options. 

Sam: I don’t know what I want for my future but something like this on LI is a great plan. Always happy each of us has options. 

Maudey: This is exactly what I meant by home base. I want to live and learn and have my life all in one place. Yes to Rosie, independence within community.

A home for typers and spellers. We can accomplish a truly new community

and way of life where we are in

charge of our future. 

Alex D: I like the sound of that, Maudey.

Feel like we can make something special and revolutionary. 

Joe: I like this. A place where we are the majority as spellers instead of the exception. 

Rose: That tiny home thing is interesting. That could be like an even more

independent option than a dorm or apartment building. 

Sam: Tiny homes around a building like this. Each person has their own space and the classes and gym and stuff could be good for all spellers even those who don’t live there. 

Maudey: I want even more classes than we

have now plus activities like dances and social groups, even Reiki. We would need a lot of staff and they need to be knowledgeable about apraxia and autism and spelling and all of it. I feel proud we are in a group where this feels possible. 

Jack: I feel like it is possible and it is necessary.

Chad: I love your ideas guys. I want to live with other spellers. This is like finding family. Really love my blood family and am grateful to find spell family too.

Christopher: Cool ideas here. It would be fantastic to have a full time spell community. 

Alex D: My thought is we should start making concrete plans now.

We should always do progress checks to stay on track. 

Matthew: I want to add that I feel over elated to have the ability

to advocate for ourselves like this.