Spelling to Communicate: Case Studies

Has your child done things that are brilliant? That shows high levels of intelligence but then doesn’t do it again? Deep in your heart do you believe your child is intelligent?

Listen to a mom describe her journey with her autistic son. No one thought he was intelligent…sometimes not even the mom…but he was and is intelligent!

Alex’s First Reply When He Started Communicating

Judy: One of the first things I asked Alex when he started to be able to talk to me was, “How did you bear it?” That was the hardest I ever cried in my life. 

He tells everybody, even now…

“I always believed that one day you would figure out that I am smart.” 

Well, it took me long enough. It was odd because I couldn’t reconcile things. He would do things that were so unbelievably clever, and yet, as a special-ed teacher, I couldn’t find a way to even teach him the alphabet.

But I tell everybody the story of the Oreos. Alex was always on a restricted diet. I kept one box of Oreos for my youngest son, Liam, and it was hidden. One day, Liam asked for one; Alex wasn’t in the room so I pulled it out. It was hidden over the stove. And every Oreo had been opened with the filling scraped out, put together meticulously, and lined up in the sleeves. 

At the time I stood there, my jaw hanging open because I thought – complete theory of mind! He knew enough to do it when nobody was around. He knew enough to make the package look untouched, so I wouldn’t know as he made his way through the Oreos. Yet I thought I couldn’t teach him the alphabet. 

How could he not be cognitively disabled? I used to walk around saying things, “I don’t understand how he can seem to understand so much, yet he can’t say a word.” Because I didn’t understand the mind-body disconnect. Speech specialists and MDs had talked to me about apraxia and dyspraxia, but nobody ever truly sits you down and explains what that really means. All of us had this vague idea that there was, quote, “motor planning”. Yet students like Edison can swim with fast bilateral motion by kicking his legs. Alex can’t!

I had dinner last night with my friends, Jennie Bryne and Elizabeth Bunker. And there’s Jennie and I cutting their steak for them because neither of them can use a knife and fork bilaterally. Alex can’t press down and coordinate that motion. 

As Elizabeth Vossler says, all communication requires volitional motor movement. I just never put the pieces of this puzzle together to say, ‘Of course, he couldn’t. How was he going to tell me? He couldn’t write, he couldn’t talk, he couldn’t type, he couldn’t sign. How was he going to tell me?’ He told me in any way he could by doing things like the Oreos.

Edison’s mother: That makes such a great point too, Theresa. I never thought that Edison was smart. They tested him and you’re testing someone who can’t answer very quickly and can’t write. So of course, his scores were low. I wanted to cry every time I saw the results.

But if it wasn’t for coming here, I realized that those tests are not accurate. If you really want to test accurately, you have to find a way to communicate. You have to get it directly from the student. 

We just recently took the state exams Edison and Judy facilitated, and he is above average in every subject. 

Theresa: Awesome!!

Judy: It’s like going up to Stephen Hawkings and giving him a test and not allowing him to use his communication device. He would have been cognitively impaired, too. 

Edison’s mother: Yes but poor parents are going around thinking that this is their child and what future could he have? But they’re only going by what the school’s saying. That’s really not a fair assessment. 

This why I’m so happy Edison’s doing S2C because not only do you see Edison speaking, but it just shows parents that don’t just look at one thing that the school does because that’s not really a fair assessment of their child. I only learned that from here with Judy.

Judy: When I saw S2C 15 years ago, it looked like the fakest thing on Earth. I’m a natural skeptic, and I am very much a person who likes science. There was no published science on this back then. Immediately, I looked, and I couldn’t find anything to support the use of it. I’ll regret that forever. But we move ahead. 

Edison’s mother: Judy did teach me from day one. I remember when Edison walked in, she had a conversation with him, just like anyone she would have a conversation with. That taught me to also speak to him in the way of not being a baby, even though he might be looking at things maybe a little bit younger on his iPad. But that does not equal what his cognitive ability is. I learned that. That was really huge because now we just speak regularly. Instead of, ‘Oh honey’ or I would say certain things or put him in the third person. 

Judy: I would shoot daggers at her across the room – If you say, ‘Mommy is going to’ one more time…

But we all did it. I tell her all the time. We all did it. It’s just a habit you have to break. But important one, though.

Edison’s mother: It’s an important one and I needed to learn that. 

Judy: He’s going to be 16 soon. He can’t be doing that. 

Theresa: Aw, Edison, do you still want to call your mom ‘Mommy’?

Edison: -I- -A-M- -N-E-V-E-R  G-O-I-N-G  T-O  C-A-L-L  H-E-R  M-O-M-M-Y.

Edison’s mother: So you want to tell Theresa, what do you call me?

Edison: G-A-V-E  I-T  -A-  T-H-O-U-G-H-T. A-N-D  -I-  A-M  G-O-I-N-G  T-O  C-A-L-L  Y-O-U  M-O-M  O-R  R-O-B-I-N.

Judy: No, you’re not. You’re not going to call her Robin. 

Edison’s mother: Edison couldn’t say ‘mom’, so he said ‘money’. So that has been my nickname.

Edison: M-O-M  I-T  I-S  T-H-E-N.

Judy: All right baby. Amazing day. 

Edison’s mother: You say thank you to Theresa.

Edison: T-H-A-N-K  Y-O-U  F-O-R  C-O-M-I-N-G.

Theresa: Well, thank you for letting me see you on this. 
Judy: You rocked, Edison.

Are nonspeaking autistic people antisocial? Meet Rocco

Rocco: H-A-V-E  Y-O-U  M-E-T  N-O-N-S-P-E-A-K-E-R-S  B-E-F-O-R-E?

Theresa: I have.

Judy: She was at Motomorphosis a year ago, babe. I just learned that myself.

Rocco: O-K  C-O-O-L.

Judy: Did you have any questions you wanted to ask Rocco? Or do you want me just to do my thing with him? I don’t know if you know what he wants to do today.

Theresa: Let’s see if he wants me to ask him questions.

Rocco: Y-E-S. -I-  -L-O-V-E  M-E-E-T-I-N-G  N-E-W  P-E-O-P-L-E.

Judy: I’m laughing. What did I tell you? I said, “Rocco loves meeting new people.”

Theresa: She said that exactly. Awesome.

Theresa: What’s one thing you would like me to know about you?

Rocco: (-I-)  A-M  N-O-T  C-O-G-N-I-T-I-V-E-L-Y  D-I-S-A-B-L-E-D.

Theresa: Yes, that I know. I can clearly see that.
Rocco: T-O-T-A-L-L-Y.  H-A-T-E  -I-T  R-E-A-L-L-Y  W-H-E-N  P-E-O-P-L-E  T-H-I-N-K  -I-  A-M.