Three times a week, Kristen Lundstrom opens her laptop from her home in Carroll, Iowa and speaks to a speech therapist at UC Davis’ MIND Institute about ways to help her 14-year-old son, Tyson, grow his vocabulary and better communicate. Tyson has Fragile X Syndrome, which is a genetic condition that causes a range of developmental issues and learning disabilities.
Many children who have Fragile X Syndrome also meet criteria for autism.
Lundstrom and her son are participating in a study that is “training parents so they can essentially function like the speech language clinicians for their own kids,” said Dr. Leonard Abbeduto, principal researcher in the study and executive director of the MIND Institute. Her family is among 30 participating in the study in areas including Sacramento and states including Florida.
She’s three weeks into the 12-week study and she’s already seeing a difference in her son, she said. Tyson has been in speech therapy since he was 2 years old, and “I feel like in this three weeks he has progressed so much faster. He’s doing really well,” Lundstrom said.
Results from previous studies at the MIND Institute have shown that this kind of at-home therapy can help kids double their vocabularies, Abbeduto said.
“We teach (the parents) how to reduce challenging behaviors, keep the kids engaged and give them strategies for teaching the kids vocabulary and grammar along the way, in a way that’s kind of natural and interactive,” Abbeduto said. “What we’re hoping to do is to give the parents skills that they can use long after the study is done to keep supporting the children’s development.”
Lundstrom and the other participants are given picture books to “read” with their child. Since there are no words, Lundstrom and Tyson use their imaginations and create the story lines, she said.
“The first time I would’ve done most of the talking. The second time he’s talking more and by the third time he’s telling me the story,” she said. “Getting him to sit down and read a book with me generally is not something he ever wants to do. So when we started out, he could read for a minute and now I think last night was about 10 and a half minutes reading. I really enjoy the time we get to spend doing it. He makes me laugh and seeing the progress is fun.”
And while they’re reading, speech language clinicians at the MIND Institute coach Lundstrom via Skype in ways to draw Tyson out, such as how to ask questions that will prompt him to expand his answers and use new vocabulary words.
For example, Lundstrom said Tyson usually gives one word answers to questions, “so I’ll say, ‘What did you do in school?’ and he’ll say ‘played basketball,’ and I’ll say, ‘You played basketball in gym class?’ to get him to extend it out and make those sentences longer.”
Talking to families participating in the study through Skype reduces the burden and expense of travel, making the study more accessible to people who live in areas without a lot of access to speech services, Abbeduto said.
“Hopefully it’s easier for the kids to learn and generalize these skills if we’re doing it in their home with familiar people rather than in a kind of unusual clinic setting,” he said.
“The language parts that they’re teaching me I can really use, all the strategies I can use in every day life,” Lundstrom said.