Four-year-old Secaucus resident Lucas Darrow sits on the floor of his special playroom arranging cups of different primary colors on a rubbery mat surface in front of him. The walls are rather bare, shelves are up high, and a small desk rests against the wall by a window. A few toys and flash cards are scattered on the floor by two white-erase boards. He counts the cups as he begins to stack them into two piles.
“What color is it?” asks volunteer Leeann Weiner as she holds up a red cup. “Red?”
“Red,” said Lucas.
“Very good!” said Weiner.
To what many observers may seem like a normal play session between an adult and a child on a rainy Sunday morning is actually a special two-hour session arranged by Lucas’ mom Janet Tavarez, who launched the Son-Rise program last year to help her son recover from autism. Lucas was diagnosed with severe Autism Spectrum Disorder and Sensory Processing Dysfunction at 20 months. Autism is one of a series of developmental problems often associated with difficulty in social interaction, language, and behavior.
“Some people refer to autism as a brain disorder, a behavior disorder, or a social disorder…It is a whole body disorder,” said Tavarez, referencing a speaker she once saw present on the topic.
“We want to see him in school in a regular classroom.” – Brian Darrow
Lucas also has verbal apraxia, a motor speech disorder, tactile defensiveness, a sensory dysfunction, and digestive and sleep issues.
Tavarez and her husband Brian Darrow began early intervention with Lucas who received speech, occupational, feeding, and physical therapies, in addition to Applied Behavior Analysis (ABA). Tavarez, who has a background in finance and technology, dedicates her time full-time to raising Lucas. Darrow works in the financial industry.
After he aged out of ABA, Lucas began Son-Rise, a home-based, child-centered program that was designed by Barry Neil Kaufman and Samahria Lyte Kaufman in 1974 when their son, Raun, was diagnosed as severely and incurably autistic. Through the program, Raun transformed from a mute, withdrawn child with an IQ of less than 30 into a highly verbal, socially interactive youngster with a near-genius IQ, according to the Autism Treatment Center of America, which was founded by the Kaufman family.
Tavarez sits behind her laptop in her living room and watches Weiner and Lucas interact via a live video feed. The stimulus-free playroom has a camera set-up in it as well as a two-way mirror in the door. Weiner and Lucas spend two full hours in the room together.
Tavarez records every program session in order to provide feedback to each volunteer. She currently has four volunteers but seeks more people who are willing to dedicate a minimum of six hours a week over a period of six months. The time is split up between two 2-hour sessions one-on-one in the playroom with Lucas, and the remaining two hours are broken up between feedback sessions, paperwork, and bi-weekly team meetings. The paperwork, meetings, and feedback help Tavarez keep track of progress in addition to providing opportunities to brainstorm ideas for activities in the playroom.
She said that they require a six-month commitment because of the time it takes between training and for someone to properly implement the techniques. Tavarez has trained extensively herself in the Son-Rise program.
Since launching the program in July of last year, Tavarez and Darrow have trained 17 individuals as volunteers.
“Basically anyone can do this,” said Tavarez. They are looking for adults of all ages that are reliable, energetic, and open-minded.
“We need people that are going to go in there and have fun.”
Love and acceptance
An educator in the Union City school district, Weiner has experience working with children and is familiar with the program after having volunteered throughout the past year.
In the playroom she picks up a blue cup and holds it close to her face near her eyes to make eye contact.
“Five,” said Lucas who sought his fifth cup in the stack.
“Five. What color is it?” asked Weiner. “Blue?”
“Blue,” said Lucas.
“Very good!” said Weiner. When they got to the second blue cup Lucas repeats “five” then he hops away.
“Language is one of the biggest things that we need to work on with Lucas,” noted Tavarez.
“[Leeann] is trying to get him to say the colors of the cups before handing them to him.”
Lucas knows 100 words, and 50 approximations of words that sound like other words. For both parents each time Lucas says a new word it is a sign of progress and provides hope.
Lucas hopped across the room and back.
“He hopped away to reset himself,” said Darrow.
“We all have something we do to soothe ourselves but we are capable of stopping it and functioning,” said Tavarez. “For these kids they are incapable of doing that.”
She noted that one of the main distinctions of the Son-Rise program is that when a child engages in a repetitive action it is accepted and acknowledged.
“We respect that behavior and we let them do what they have to do,” said Tavarez. “There is a physical, emotional need and they need to fill it. We wait to interact with him only when he is done.”
When he returned from hopping, he began slapping the floor with his hand. Weiner imitated the action and also slapped her hand on the floor. Later on Weiner followed Lucas around the room to a full-length mirror and mimicked his behavior.
Weiner was engaged in what the Son-Rise program refers to as “joining,” or synchronized action and doing exactly what Lucas was doing.
“It is the concept of entering their world and letting them know, ‘Listen, I still love and accept you, and I understand this is what you have to do, and if this is what makes you feel good, then I’m going to join in with you as well,’” said Tavarez.
“When you build that relationship eventually they want to join you,” added Darrow.
“That is the key. Love and acceptance,” noted Tavarez.
At one point during the session Weiner hugged Lucas as they both sat together on a large gray pillow and laughed.
Hope for recovery
“Recovery,” said Tavarez about her hope for Lucas.
“That he develops full language. That he stops the self-regulatory behavior,” said Darrow. “We want to see him in school in a regular classroom.”
“With typical children his own age and having the same interests of children his age,” added Tavarez noting that it, “is a challenge for us right now.”
She said that many people don’t believe in recovery but she remains positive and optimistic.
“It is impossible to predict how long it will take,” said Tavarez. “But we are in it for the long haul.”
After the volunteer session Lucas sat everyone including The Reporter on the living room couch and led us all in counting to 20. He stood at the front of the room like a teacher. His mother, father, and the volunteer repeated after him as he said each number and they held up fingers to count along. There was much celebration when he reached twenty followed by hugs and cuddling on the couch.
“He’s changed me,” said Weiner. “Just to enjoy life…He is so pure and so happy.”
For more information or to volunteer, call (201) 702-1208 or visit: www.bridgetolucas.org.
Adriana Rambay Fernández may be reached at firstname.lastname@example.org.