In Their Own Words: In Hope And Wonder

If this installment of the In their Own Words series, sharing the words of nonspeakers and unreliable speakers who use Spelling to Communicate (S2C) to communicate, doesn’t convince you how intelligent nonspeakers are, nothing will! My friend Lisa Ann has contributed here before, and today she shares what her son Aidan has to say now that S2C has given him his voice. I couldn’t love this post more and it is evident that Aidan shares his mama’s wit and wisdom. I’m so thankful to both of them for letting me showcase that here!

These are some words I never thought I would hear: “Would Aidan like to be a guest blogger?”

Getting Started With S2C

When you have a child with autism who is verbal, you don’t explore some of the options that the non-verbal community have already delved into pretty deeply. I also don’t want to get too far into this either without being completely transparent. I have always uttered the words “presume competence” like a mantra; but the truth is, I don’t think I truly presumed that at all. I gave his words and his actions validation and now I realize, they are NOT a reflection of his intentions, feelings or ability. FAR FROM IT TOO!! Disclaimer and ownership out of the way, this guy DOES have things to say. We started S2C a year ago, and if I could go back in time and listen to those people who encouraged me to read Underestimated, I might have started sooner. However long it took us to get here, we are here now. So thank you to Joanna of Holistically Whole for wanting to hear what Aidan had to say “In his own words.” It’s an honor and a privilege to share them.

We began Spellers a year ago this April and my mind was blown on day one. Let’s be clear, he wasn’t spelling sentences or feelings, BUT he was able to spell with his practitioner Dana Johnson (Spellers Co-Founder) and in short order, he was spelling with me too. We found our rhythm and after three trips to Florida, we have a great rhythm. We spell almost every day, and over the last couple of months he has started expressing himself in full sentences. So…

Aidan spelling with him mom (Photo Credit: Lisa Ann Peters)

I had a back and forth with him to see if he was interested in doing this and he said he was and that he had lots to say. He expressed that a Q&A format would work best for him. I agree, because he’s just not there yet. BUT he will be soon.

Q&A With Aidan

Introduce yourself:
A: Hi, my name is Aidan.
How old are you?
A: I am 22 years old.
Where do you live?
A: I live in Murrells Inlet, South Carolina.
Tell me 3 things to know about you:
A: 1. I love languages, 2. I understand everything, and 3. I am a man who gets autism and epilepsy.
What did you think was going to happen when we took you to Florida for your first spelling intensives??
A: I thought, “Amazing!”
*NOTE: I had been talking to everyone about my friends {who have been doing S2C} and the success they’ve experienced and how life changing it could be for him. Now I know that he heard every word and had been anticipating that visit as much as we were.

There Was Never Anyone Who Thought I Was Smart

So you knew what was going to happen?
A: Yes I did.
Tell me what the last year of spelling has meant to you:
A:  It has meant another world has opened to me.
What would you most like to share with people who don’t know you?
A: I would like to share that I am smart and I am able to do anything they can.
Has there been a teacher who you felt believed in you and knew that you were capable?
A: There was never anyone who thought I was smart.
What would you say to parents thinking of S2C/Spellers?
A: I would tell them to definitely try Spelling.

Wait, You Know Chinese?

Do you feel like you have a disability?
A: My disability is apraxia
Tell me about apraxia.
A: Apraxia is a disconnect between my brain and my body and my mouth.
Could you share with me what you’re passionate about?
A: I am passionate about Languages.
What languages would you like to learn?
A: I really want to focus on Mandarin.
Do you know languages other than English?
A: I know Chinese very well.

This is where I had to pause, because “What do you mean you know Chinese, but want to focus on Mandarin? Who are you????” I pulled out a translator on my phone and I proceeded to type in random phrases/words and translate them to Chinese for him to hear. Then, I asked him to spell what they had said. When I tell you that he spelled each and every word with complete accuracy, I promise I’m not joking. This was completely shocking to me and that’s when I realized what a complete prison my son had been occupying for 20+ years.

Aidan chilling on the beach (Photo Credit: Lisa Ann Peters)

An Astounding Capacity To Learn

His capacity to learn is so astounding and beyond comprehension really. He only needs to see or hear it for it to become knowledge for him. I believe explanation, guidance, and repetition are just completely unnecessary for him to completely absorb, understand, and store. I stopped trying to make sense of how he could’ve learned Chinese.

He went on to tell me that he also knew Spanish and German. I’m sure you can imagine what happened next. Days and days of translating and more proof that yes, he does know those languages as well. He described his skill level in those languages as very good but not as strong as his Chinese. This is where my bestie came in, because I immediately called her to speak Spanish with him. She spoke at a normal pace and although he didn’t verbally answer her, he spelled his responses proving that he understood her completely. Not only did he comprehend her, but he also was very present in 2015 when he met her family. She asked where he last saw her and her son’s name (just to name a few questions) and he answered without hesitation.

I think he enjoyed showing off and we loved every second. We are still processing this knowledge and trying to supply him with plenty of material to study and enjoy.

What do you hope this means for your future?
A: I hope it means that I am able to live independently.
Do you understand the limitations you have now?
A: I do understand.
Other than your passion for language, what is an area of great strength for you?
A: An area of strength for me is reading. I like to listen.

Brain/Body Disconnect

There have been many occasions after spelling with Aidan where he expresses a strong desire to do something that he will fight me on once it’s introduced. His iPad is a perfect example. He told me on the letterboard that he wants a different device for learning. I think that’s because his iPad is a compulsion and he has hatred towards it and his compulsions. I know from the movie Spellers and from reading countless stories from other parents that this is a pretty common issue that can exist.

Should I trust what you spell or what you say?
A: You should always trust what I spell.
What you say is very different from what you spell sometimes.
A: You should trust what I spell always always (he spelled it twice)
How do you feel about your iPad?
A: I hate it.
What should I do moving forward?
A: Get rid of it.

This is easier said than done. He comes completely unglued if he doesn’t get on the iPad first thing in the morning. We found that out the hard way during a trip to Florida for Spellers when he became so profoundly dysregulated because we left it at home. We are currently and SLOWLY limiting the use of the iPad and have put his audible account on an iPhone per his request) to separate his compulsions from his learning device). As with anything difficult and meant to be lasting, this will take time.

How can I help you move forward with your goals when sometimes you fight me about the things you’ve requested?
A: I always need your love and understanding as I get better.
*Don’t we all?!*

Aidan with his mom and stepdad (Photo Credit: Lisa Ann Peters)

Plural Marriage Is Nobody’s Business

Here are some questions that I had asked him over the last 8 weeks straight from a lesson book called SHE BELIEVED SHE COULD SO SHE DID which asks some “open” questions (answers not concrete or provided in the lesson) at the end of each segment.

What is a way that you would like to serve others in the future?
A:  I would like to help other people understand those with apraxia.
Name a trailblazing woman in your life. How so?
A: Dana Johnson. She is leading the revolution of spellers.
What is a rule you find to be obscure or unfair?
A: Plural marriage because it’s nobody’s business.
*I didn’t see this one coming, but I did watch Big Love in its entirety and he was right beside me!*

Aidan with Dana Johnson from Spellers Tampa (Photo Credit: Lisa Ann Peters)

Hope For The Future

Imagine you had a widespread social platform like an Olympic athlete. What would you advocate for?
A: We would advocate for people who have autism.
Name something about yourself that you think people admire?
A: People admire my blue eyes.
*And they do*
Last question Aidan. Now that you’re spelling and starting to really express yourself more and more, how do you feel about the future?
A: I feel in hope and wonder about what’s next for me.

Aidan at Night To Shine (Photo Credit: Lisa Ann Peters)

I feel “in hope and wonder” too!! We are just beginning to really get to know Aidan and I am so beyond grateful that he is no longer trapped in his body and unable to really express himself. It’s an overwhelming feeling and we are loving every moment and also apologizing profusely for every time we didn’t talk to him and or treat him like the intellectual man that he clearly is and has been. I’ll probably be apologizing forever!

Lisa Ann Peters, originally from Richmond, Virginia now resides in South Carolina with husband Michael and son Aidan. She is currently working for SOS Care serving individuals and families with Intellectual Disabilities in job development. She also remotely owns a 43-year-old family-owned restaurant in Richmond, VA.

Aidan Setchel is living his best life on the Garden City Beaches, spelling daily. He enjoys spending time with peers at SOS Care as much as possible, taking rides in the golf cart, and chasing sunsets and full moons with his Mom and Stepdad. His sister Ryan remained in Richmond and he likes catching up with her as often as possible.