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What Do You Say?

I spot Tom and his mother at the deli counter before they see us. A familiar anxiety shoots through me, and I consider taking a sharp left and ducking down the international foods aisle before we’re noticed. But we need the lunch meat and my son needs the practice, so I breathe deeply and head in their direction.

“Hi, Tom,” I say as we pass. I smile at his mom.

“Hi,” he replies, and then adds with more enthusiasm, “Hi Bud!”

My son continues walking.

“Can you say hi to Tom, Bud?” I prompt.

“Hi, Tom,” Bud says, without looking in Tom’s direction.

We take our place at the deli counter a few people away from Tom and his mother. I remain tense, hoping that the line moves quickly. It doesn’t. Suddenly, Tom is at our cart.

“Did you have a good vacation week, Bud?” Tom asks.

“Yeah,” Bud says, looking at me.

“What did you do?” Tom asks.

Bud turns to me and starts to speak.

“Tom’s over there,” I prompt gently, turning my head.

Bud turns his head toward Tom, but looks at the salad bar. “I did lots of things.”

“That’s great,” Tom says. They stand in silence.

“Did you do anything special on vacation, Tom?” I ask.

“Yeah,” Tom answers enthusiastically. “We went to Washington, D.C. I went to the National Museum of Natural History and then I went to the Air and Space Museum. I think you would really like that one, Bud.”

Bud doesn’t answer.

“That sounds cool, doesn’t it, Bud?” I say. “They’ve got airplanes and spacecraft.”

“That’s transportation,” Bud says.

“You’re right,” I say. “That is transportation.”

“And you know what else is transportation?” asks Bud. “Jay Jay the Jet Plane on PBS Kids. You can go to the PBS Kids website to learn something new with Brenda Blue!”

Mercifully, Tom’s mother has finished at the counter and calls him over. “Bye, Bud,” Tom says with a wave.

Bud looks at me and asks, “Do you know Jay Jay the Jet Plane, Mom? And Big Jake, Old Oscar, Savannah, Snuffy the Skywriter, Herky the helicopter and Revvin’ Evan the fire truck?”

I smile and tell him I know them all. And then I turn to the deli worker who is asking for my order, and I wonder why it has to be so hard.

Encounters like this are common occurrences for children with pragmatic language disorders – many of whom, like Bud, are on the autism spectrum. The Speech-Language-Hearing Association identifies three major communication skills involved in social interactions: using language for different purposes (greeting, informing, requesting, promising); changing language according to the needs of a listener or situation (talking differently to a child vs. an adult or in a classroom vs. on a playground); and following conventional conversational rules (turn-taking, staying on topic, reading nonverbal cues). People with pragmatic language disorders often experience challenges in all three areas.

The parents of children with pragmatic language disorders can also feel challenged. “I avoid a lot of things for my kids’ sake,” says Margie, a parent of two children on the autism spectrum. “We don't do play dates, we don't go to playgrounds, we don't go to grocery stores or even the toy store. My kids can't communicate effectively at all. While we've been working on pragmatic speech and expression, it has been very, very slow.”

That slow progress can make parents start to avoid social situations altogether, says Jeff Marler, Ph.D., a speech language pathologist with a practice in Southlake. “It’s natural for parents to disengage a bit,” he says. “They are fatigued by the battle at the grocery store. But our kids need to be there.”

So how do we do it? Where do we start?
Do you read me?
One leading strategy focuses on the skills children need before engaging in social interaction. The Social Thinking model, developed by speech language pathologist Michelle Garcia Winner, is designed to help kids understand their own social behaviors and how others react to them. “It helps teach kids to think about how others are thinking,” says Krista Norwood, a speech language pathologist at the Shelton Speech Clinic in Dallas who uses the Social Thinking model in her work. “We can teach them social rules and they can follow a script, but that doesn’t carry over and generalize in a natural way unless we help them understand why it matters. They need to care about it.”

That’s where Social Thinking comes in. It focuses on key skills that are often areas of deficit for people with pragmatic language disorders: initiating communication to seek assistance or information; listening by integrating visual cues (nonverbal communication and body language) with spoken language; interpreting abstract language; taking another person’s perspective; understanding the “big picture”; and using humor in relationships.

Norwood offers the following suggestions to parents who are working on pragmatic language with their children at home:

  • Develop a Social Thinking vocabulary and use it consistently with your child – Winner’s website, socialthinking.com, is a good place to start. Use it to remind your child to “listen with his eyes” (pay attention to nonverbal cues) and to think about whether others will see his behavior as “expected” or “unexpected.” Help him try to read situations and “make a smart guess” about how to approach them.
  • Be diligent about setting up play dates for your child, but be particular about the other child you invite. Find a child who can be a “mentor” to your child.
  • Use direct and specific language with your child and avoid using figures of speech. For example, say “start over at the beginning” instead of “try it again from the top.”
  • Tell your child what to do, instead of what not to do. Say “please walk” instead of “don’t run.”
  • Teach your child to use the “two-question rule,” in which she bounces back a question after she answers one. (“What did you do on your vacation?”; “I went to the beach. What did you do?”)
  • Help your child develop a “people file” – an invisible drawer in his mind in which he stores information about people. If he learns that his classmate Nicole takes horseback riding lessons, he can store that fact in his people file. The next time he sees Nicole, he can ask about it: “Have you been riding lately?”

Norwood stresses that the Social Thinking approach doesn’t cure pragmatic language disorders but aims to help children function better. Social communication might never feel natural for them, but they can learn strategies that make it feel more comfortable.
Ready, set, interact
Another effective approach to help children with pragmatic language disorders is the SCERTS model, which focuses on Social Communication, Emotional Regulation and Transactional Support. According to the SCERTS philosophy, a child needs to achieve emotional regulation – a well-regulated emotional state to deal with stressful situations without becoming overwhelmed and “dysregulated” – before he can be “available” for learning and interacting.

Rachel Wehner and Jamie Cato, speech language pathologists at the UT Dallas Callier Center for Communication Disorders, run programs for children that draw heavily from the SCERTS model. They suggest a number of strategies parents can use to help their children improve their social communication:

  • Help your child achieve emotional regulation before trying to communicate with him. Heavy work – pushing furniture, lifting water jugs, carrying books – can boost his engagement level if it’s too low. It can also settle him when it’s too high.
  • When working on emotional regulation, narrate your child through his feelings. “When they are upset,” Cato says, “that’s the time to talk about ‘mad.’ Label the emotion while the child is feeling it.”
  • Help your child identify the strategies that help him self-regulate. Point out to her that jumping on the trampoline helps her calm down and encourage her to use that strategy independently.
  • When engaging in parallel play with your child, talk about what your child is doing instead of what you are doing. Try “Oh, you chose two blue blocks!” instead of “Look! I’m building a tower!” Your child is more likely to engage if your language is oriented to her.
  • Be prepared to be flexible when engaging with your child. “It’s not about the end result,” Wehner says. “It’s about the process. If the child is engaged but moves the action in a different direction, abandon what you’re doing and follow the engagement.” In other words, if you’re playing with blocks but your child engages with you about his shoelaces, shift your attention to the shoelaces.
  • Modify your communication level to match that of your child. “Be at or one step above the child’s level,” Wehner says. “If they are using single words, don’t use seven- or eight-word sentences.”
  • Slow down the pace of your communication. Become comfortable with long pauses. If your child doesn’t respond right away, he may just need more processing time. Resist the urge to use more language.

A right to be here
Jeff Marler brings to his practice 16 years in clinical research and 28 years as the parent of differently abled children, including a daughter with pragmatic language challenges related to Williams syndrome. He understands the emotional challenges parents face when they see their children struggling socially. “It’s natural to have dreams and aspirations for your children, but whether neurotypical or involved, they all bring their own set of skills and challenges,” he says. “All parents have to adjust their goals and dreams to those of their children. Our differently abled children make us do that overtly, because they don’t fit a particular mold.”

He stresses the importance of focusing on who your child is as an individual in order to understand what strategies and interventions will be most effective. He also stresses the importance of engaging with the community – others facing similar challenges as well as the community at large. He advises that parents:

  • Find a community. Get to know other parents who have similar challenges and let your kid be with other children. Avoid group “venting sessions” and seek a group built around sharing ideas and providing support.
  • Remember that in challenging social situations, you can’t change how others respond, but you can change how you respond to your child. Remember to tell yourself, “My child has a right to be here.”
  • Try to shift your thinking away from the medical model of fixing problems and focus on the opportunities as you rework your dreams and goals for your family. “Step back from the deficit model,” Marler suggests, “and ask, ‘What are the intrinsic gifts this child brings to me as a parent and to the family?’” Focus your energy on those gifts.

“Challenges are a reality,” Marler says, “but they are not the core truth. The core truth is that my community is better if it can receive what my child has to give.” It’s essential for our children to step back into the community after they have difficult interactions, Marler says. “We have to foster in parents the courage to re-engage.”

So, how do parents re-engage? Often, it’s by understanding and acknowledging their limitations. Advances in social communication skills are real for our children, but they are hard-earned and progress is slow. I talked to my son about conversation last week. I waited for a time when he’d achieved emotional regulation – we were walking around a track, and the pounding of his feet on the rubberized floor helped him settle in and find his “groove.”

“Bud,” I said. “When you talk to someone, it’s important to take turns.”

“Oh, yeah, right,” he said, without much enthusiasm.

“You can talk about what you’re interested in for a while,” I said, “but then you have to switch and talk about what they’re interested in.”

We continued walking in silence.

“So, when you’re talking to Nana,” I said, “what is something that you like to talk about?”

“Teletubbies,” he answered.

“OK, so after you talk about Teletubbies for a while, you need to stop and ask Nana about something that interests her,” I said.

“Yeah,” he replied.

“So what is a question that you could ask Nana?”

He thought for a moment as we rounded the track. “Well,” he said, “I could ask, ‘Nana, who is your favorite Teletubby?”

Progress is slow, but even small steps forward are significant. As we walked the track last week, Bud and I had a genuine back-and-forth, give-and-take conversation about conversation – something that would not have been possible just a few years ago. Bud and I will keep working to strengthen his skills. We will continue to engage with our community and to seek out safe conversation partners with whom to practice.

And I promise you this: The next time we’re shopping and I spot Tom and his mother across the store, I’m heading straight in their direction.