Originally published in the Austin American-Statesman – December 16, 2017
Baxter communicates by letter board and by typing. Baxter Wilson-Rul points out each letter on a letter board in his Cedar Park home, using it to say: “I meaningfully have great learning.”
Meaningful learning is what he’s asked for for long as he can remember, except he didn’t know how to tell people, and he couldn’t say that he had all these sophisticated thoughts that he couldn’t express.
In his school newspaper, the 13-year-old writes about his 2-year-old self: “Teach me to speak! I screamed in my mind as I made my way to full, explosive, mean tantrums.”
Baxter did have some sounds, says mom Monica Rul. “He seemed to be doing great,” she says of Baxter as a baby. “He would make noises. He would babble, but he was not talking.”
She started noticing a change in him when he turned 1. Skills that he had would disappear. He didn’t progress.
At first Rul and her wife, Tiffany Wilson, were told not to worry: He’s a boy. He will eventually talk, they were told.
Yet they noticed little things. He never developed a sleep pattern, Wilson says. “He couldn’t sleep by himself.”
At 2, they were told he had a delay and they should start speech therapy. By 3, a neurologist diagnosed him as being nonverbal and autistic.
“Even with that, we knew that there was a level of comprehension,” Wilson says.
They knew that he was listening and that there was intelligence there. They just couldn’t communicate with each other.
They would spend the next 10 years learning how Baxter’s mind worked and how they could unlock language for him.
Their first step was speech therapy.
“You could see he was struggling, he was trying to talk,” Wilson says. “His face would get red.”
The speech therapist would show him pictures and try to get him to say the object in the picture. “Nothing would come out,” Rul says. “He would look at the therapist and then look at the card and look at her again and then the card again and then he would start crying. You could tell he was really trying hard to say the word. He was understanding it and connecting to it. His body was not cooperating with his mind.”
He describes it this way in a school assignment: “My body freezes and marches to another tune. Move, I say in my mind, but it hardly hears me because it is disconnected.”
He couldn’t make his body move to form the words that were in his head.
For three years he didn’t have any spoken words. Then, at age 6, he said his first word. “Ma,” for Wilson, who is Mama; Rul is Mommy.
Then, Rul had a friend who told her to watch a local news report about Austinite Soma Mukhopadhyay and the Rapid Prompting Method she developed and her nonprofit organization, Helping Autism Through Learning and Outreach. Rul watched the report showing a nonverbal boy with autism begin to communicate by pointing out each letter in a word on a letter board. One letter adds up to a word, which adds up to a sentence, and then a paragraph and whole thoughts.
Mukhopadhyay, though, didn’t start kids until they were 7, and Baxter was 3 at the time. They would have to wait. As he got closer to 7, Rul called Mukhopadhyay’s clinic and set up their first appointment.
“For seven and a half years, no one knew how much intelligence I marvelously obtained in my silence,” Baxter writes in a school assignment. “My muteness and my shackled chains of chaotic mind and body disconnections made me a prisoner to dire autism.”
The first time Mukhopadhyay worked with him, he was beginning to communicate by pointing to the correct answer on pieces of paper each time she asked a question.
“I was just breaking down in tears,” Rul says.
It didn’t take very long for Baxter to turn letters into words and a whole sentence. After three or four sessions, Rul says, he built his first communicated thought: “God is in our family.”
It was profound.
His next message, though, was more practical: “I would like to go to Target.”
As Baxter began to use the letter board, Rul became his partner. “You’re going to communicate with me,” she would tell him. It took a full year before he would do it with Rul.
For some reason, and they don’t know why this is, there are some people he’s comfortable using the letter board with and some he just isn’t. They’ve seen it with different therapists. They also see it within the family. He doesn’t use a letter board with Wilson, but he does with Rul.
The letter board opened a new world for him. It also confirmed things they knew to be true.
There were things that Baxter could do that neurotypical kids might struggle with. He could easily find things in a room that were misplaced. He would notice if something was missing. He knew routes to get to places, even how to get to Virginia after they took a road trip there.
He started reading at age 2, and he would read quicker than most people, using a photographic memory to scan the whole page and digest it.
“He already knew things, he just couldn’t articulate them,” Rul says.
They also knew he had a hyper sense of hearing. “Nothing is secret,” Wilson says.
He describes his hearing this way in a school assignment: “Havoc in my hearing every minute sound. How can everyone be calm hearing all these sounds?”
Hearing all those sounds also made him want to escape the noise around him. He would often go out the front door to get away from the sounds. Rul and Wilson had to put a chain lock high up on the door, where he couldn’t reach it at the time.
People didn’t understand what he was sensing. “He may not understand social cues, but he could read people,” Wilson says.
“I see your aura is an amazing blue,” he says with the letter board. That’s a good color as auras go.
He reads people’s energy, Wilson says. “He sees things we don’t understand about.”
“I am seeing more than others,” he says, pointing to the letter board. “I hear through walls.”
Once he started with the letter board, he began to take off. Baxter’s neurologist Dr. Lindsay Elton says before the letter board she had to communicate with him by pointing. He was having a strange sensation in his arm, but he couldn’t tell her about it.
Then he started the letter board. “If you had told me he was communicating with a letter board, I would have said, ‘Yeah, that’s great.’” Then she saw it. “You could have picked me off the floor. … He had that sophisticated language at his fingertips,” she says. “It was a really humbling lesson to me.”
Now he tells her what he wants and needs and what he’s feeling. “I never knew what he wanted before.”
Not all of the skeptics were convinced. At school, he still was given books that were beneath his reading level and received a 24-piece puzzle as a third-grader to do as schoolwork.
One night, Rul asked her then 8-year-old son, “What do you wish you could do?”
“I wish I could learn how to talk,” he responded by letter board. “I have so much to say.”
“My heart sank,” she says.
He also told her, “I wish I could read more books. I love you, Mommy.”
“I burst into tears because that was the first time he pointed on the letterboard, ‘I love you Mommy,’” Rul says.
They struggled to get him more advanced work and to get an aide who could use the letter board with him.
They hit a wall and pulled him from fifth grade to do home schooling for the rest of the grade.
“He felt like people didn’t know how smart he is,” Wilson said. “It’s insulting to him.”
Home schooling was just temporary.
For middle school, they turned to online school K12 International Academy.
He attends virtual classes. He is learning to type and will type in questions to the teacher.
“He could communicate as well as any nonautistic student in this environment,” says Laurie Haines, who taught life sciences to Baxter last year. “He has no handicap in the virtual world.”
Haines didn’t even know Baxter has autism and is nonverbal until the first time she did a monthly conference call with him and Rul. People might think that he’s not listening because he might not be watching them or nodding or responding, Haines says, but he is. “The things he comes up with to say are at a high level. He’s thinking in big words,” she says.
“For all of his teachers here, he’s a favorite. …” Haines says. “He’s an eager learner and he doesn’t hesitate to compliment the other students and the teacher.”
English teacher Julie Davis says she doesn’t have to modify the way she teaches Baxter aside from being careful to challenge him. “He didn’t want me to give him a pat on the back,” she says.
He seeks constructive criticism and is eager to make revisions and improve, she says.
She’s also learned to have patience and wait for him to finish his thought rather than jumping to conclusions.
In addition to now being able to communicate by letter board and by typing, Baxter has been learning to communicate by playing piano and composing music. It took a year with piano teacher Richard Hurley, who specializes in students on the autism spectrum, before he could move his fingers properly on the piano.
What Hurley has found is that each of his students is different and learns differently. “They have a unique learning system of their own,” he says. “It’s up to the teacher to work with them.”
Kids like Baxter, he says, don’t just use language. They communicate in painting, in music, in sports. “It’s part of the larger program that he has written for himself.”
Baxter, Hurley says, “is going to continue to defy conventional expectations. … I know he has many more surprises up his sleeve down the road.”
For Rul and Wilson, they hope he finds independence and happiness. They know independence might not happen for him when he’s 18, but maybe in his 20s.
“I would like to be a writer,” Baxter says by letter board.
“He always wants to share his story,” Rul says.
“I think he really wants to be an advocate,” Davis says. “I see him sticking to this topic of autism awareness.”
For one assignment, Baxter wrote a letter to the Houston Chronicle after it ran a special report about the state of special education in Texas.
He writes: “I am living proof that Texas is being malicious in denying every tender student equal opportunity in services making cause to bring action to the forefront. … Great belief in equal services and education for all becomes amazing happiness.” Then he urges people to write to their state representatives.
“Teach them like everyone,” Baxter says by letter board.
Now he says, “I love my teachers and having an education.”
He calls his school before “remedial.”
Now, he says, “I have marvelous math — algebra.”
He wants everyone to know: “I can do everything.”