CHAT Therapy Brings Hope to Parents of Hyperlexic Learners
Parents are thrilled and cheer when their kindergartner or first grader begins to sound out and read the words to a story for the first time. It’s a milestone to call the grandparents about and it’s a skill that will last a lifetime. But what if your two-year-old is reading far beyond the level of one of those kindergartners or first graders, yet they’ve never uttered the words so common for a toddler: ”mommy, no, mine, daddy?” For over 40 years, CHAT has been at the forefront of this learning style called hyperlexia, a term that describes a child’s precocious ability to read (far above what would be expected at their age or developmental level) within the context of another developmental disorder.
“The extreme relief from a parent when they find CHAT is palpable,” says Speech-Language Pathologist (SLP) Ciara Nally, CHAT’s Assistant Director, Teletherapy and Twice Exceptional Services. “They are so happy to have found a place that understands their child and doesn’t dismiss their concerns.” Although hyperlexia may be a key symptom in describing the learning style of these children, it is not a stand-alone formal diagnosis. Rather, it exists alongside other disorders, such as autism spectrum disorder, language disorders, or social (pragmatic) communication disorders. “The way hyperlexic children acquire language is almost the opposite of the way typical language learners acquire language,” explains Ciara. “The hyperlexic learner needs the word before they can attach comprehension or articulation to it; because the reading skills of these children are their strength, we use this strength to develop their weaker skills, such as verbal language.”
Much of what is known today about hyperlexic therapeutic approaches was developed by CHAT founder Phyllis Kupperman. Beginning early in her career, Phyllis was at the forefront of understanding and developing the therapies that worked best for hyperlexic learners. “It really has been my lifelong mission to support these children,” says Phyllis. “It warms my heart to watch a new generation of CHAT SLPs step up and embrace our hyperlexia therapy practice.” CHAT Executive Director, Karine Fiore, explains, “Phyllis has been known to say that what she does is not ‘rocket science,’ but the truth is that her advancements in hyperlexia therapy are extraordinary. Our team works diligently to further her tremendous legacy of service to hyperlexic learners and their families. It is impossible to quantify the impact Phyllis has had, which we are committed to growing going forward.”
“This is more than a job. It’s a calling and I am so privileged to have these smart, beautiful children in my life.”Ciara Nally
While experts understand hyperlexia much better today than 40 years ago, they remain few and far between. Sara Tamborski, CHAT’s Director of Administrative and Clinical Services, explains, “We are always looking for opportunities to expose our SLPs to hyperlexia, in addition to the other life-changing speech therapies CHAT provides.” Like Phyllis, CHAT SLPs believe in following the child’s lead. Not only do these children have a fascination with letters and symbols, and are highly skilled in pattern recognition and decoding, they also often become hyper-focused on specific items or particular areas of interest. By incorporating that area of interest into the child’s therapy session, CHAT’s SLPs meet these children at their level.
For two-year-old Lexington, saying his own name was a struggle. When asked “what is your name?” his response was to spell out his name, letter by letter. By developing a social narrative (and utilizing his fascination with fruit), Ciara was able to teach Lexington that the letters made up one unit that was his name. “The first time Lexington said his name, his mother was brought to tears,” said Ciara. “That’s what makes our work with these children so rewarding.”
It has been estimated that up to one in five autistic people are likely hyperlexic, but approximately 80 percent of hyperlexic people are autistic. With the prevalence of autism increasing, the number of hyperlexic children also grows. “As one of the only clinics in the world that specializes in hyperlexia, we have a duty and responsibility to these children,” says Ciara. The third edition of Hyperlexia: Therapy that Works, A Guide for Parents and Teachers, co-authored by Phyllis in 2002 and 2013, is set to be released soon, providing new and up-to-date resources for families and those that support hyperlexic learners. “This is more than a job,” says Ciara. “It’s a calling and I am so privileged to have these smart, beautiful children in my life.”
Hyperlexia: Systematic review, neurocognitive modelling, and outcome
Alexia Ostronlenk, Baudouin Forgeot d’Arc, Patricia Jelenic, Fabienne Samson, Laurent Mottron
Centre d’excellence en Troubles Envahissants du Développement de l’Université de Montréal (CETEDUM), Hôpital Rivière-des-Prairies, 7070 Boulevard Perras, H1E 1A4,Montréal, QC, CanadabCentre de recherche du CIUSSS du Nord de l’Île de Montréal, Québec, CanadacDépartement de Psychiatrie, Université de Montréal, H3T 1J4, Québec, Canada
Communication Justice! Meet Two New Members of CHAT’s Associate Board
CHAT had the pleasure of introducing Jessica Velazquez, chairperson of our newly launched Associate Board, in the Spring edition of The Chatter. Now it’s time to introduce two more members of this group of young professionals who will leverage their networks, skills, and advocacy to help CHAT bring its life-changing therapy to communities that need them most. You can’t miss this group’s strong communication justice voice!
When Tammy Le was nine years old, she began accompanying her parents and grandparents to their medical appointments. As a first-generation child of Vietnamese immigrants, she saw firsthand the barriers to care that her family members faced. “Often there was no interpreter and I found myself trying to explain difficult medical terminology,” said Tammy. “It shaped my outlook and helped me discover that my career choice had to involve community connection and communication.”
As a second-year graduate student in speech-language pathology at Northwestern University, Tammy is already making an impact in her university environment. As the only student nominated to the newly formed diversity, equity and inclusion (DEI) committee within her master’s program, Tammy’s mission is to advocate for students of color, supporting many first-generation undergraduate students as they navigate the educational system. “This DEI committee and the opportunity to serve on CHAT’s Associate Board really give me a voice to speak out about barriers to access in health care and education,” says Tammy. “Building awareness about these disparities and effecting change in diverse communities is what fuels me.”
“Building awareness about these disparities and effecting change in diverse communities is what fuels me.”— Tammy Le
Myles Francis draws on his experience growing up in three distinct communities to guide the meaningful career choices he has made since graduating from the University of Illinois at Urbana-Champaign with a degree in Economics. He has come full circle from his early childhood years in Chicago’s South Shore neighborhood to once again living in this community he calls home. “I love this space, I care about it, the diversity means a lot,” said Myles. “I spent my school years in Bolingbrook and Naperville, and my parents were very intentional about explaining that we lived in these western suburbs to attend school and protect us from violence, but they always reinforced the strong cultural tether to South Shore.”
Myles serves as Project Manager for the Chicago Center for Youth Violence Prevention (CCYVP) at the Crown Family School of Social Work, Policy and Practice at the University of Chicago, providing residents of historically underserved communities with resources, workforce opportunities and trauma-informed care via evidence-based, community-led initiatives. In addition, Myles is also an AmeriCorps service member working in a development role with the Greater Chicago Food Depository on approaching violence prevention by meeting basic needs around food security. “CHAT’s Associate Board opportunity allows me to add the third portion of the triangle,” explains Myles. “The academic, research-based work of CCYVP; the basic needs initiatives at the Food Depository; and now CHAT’s educational, health and emotional learning services all come together for me to help pull communities up, make them successful, and thrive.”
Boy’s Confidence Blooms as Articulation Takes Off
When you win a gold and bronze medal in swimming and are blessed by the Pope all in one month, it’s pretty remarkable. But then there are so many things about Franco Bibbiano that are remarkable.
Having the composure to compete in the Special Olympics and the confidence to have a dialogue with Pope Francis was nothing short of astounding for this 12-year-old boy with Down syndrome. “I always knew Franco had it in him,” said his mother, Elena Cutri. “But to see the courage in his eyes as he approached these situations brought me to tears and left me simply in awe of my son.”
As with all children, there is a wide range of abilities, behavior, and physical development among children with Down syndrome. This genetic disorder often includes speech and sound disorders, such as articulation and phonological disorders. Franco struggles with both articulation (producing individual sounds) and phonological processes (learning the sound systems of language), rendering his speech difficult to understand.
Pope Francis: ”What is your name?”
Franco: “I am Franco.”
Pope Francis: “Oh, Franco! Just like me, Francis.”
Franco: “Yes, just like you.”
For Elena, this all came to a head when Franco was 10 as she watched her child try to speak with his peers in a classroom setting, only to see the other children disengaging because they couldn’t understand what Franco was saying. “Even though Franco was receiving some speech therapy, it wasn’t enough,” remembers Elena. “I knew something had to change and I feared if it didn’t, Franco might miss all those opportunities to make friends.” That was four years ago and Franco has been improving his articulation, literacy, and confidence ever since, thanks in large part to CHAT.
With twice weekly one-on-one therapy sessions during the school year and participation in CHAT’s 20-session summer program, Franco is looking forward to high school. “To have CHAT in our back pocket, clinicians who truly understand Franco and his needs, and the extra boost he receives with CHAT’s summer program is more then we could have ever hoped for,” says Elena. “Franco is ready for this next adventure as a freshman in high school, he has confidence in his ability to communicate, and he can’t wait to make new friends.”
Voices of Value
Lifesaving Therapy Priceless to Family That Helps Support Access for All Children
Randy and Kay Lewis’ dreams for a healthy baby boy — baseball, Cub Scouts, model airplanes — dominated their thoughts as they welcomed their second child into the world. And although little Austin’s birth and infant years were just as extraordinary as those of his two sisters, there was nonetheless something different. Friends and family began to point it out and make comments, and Kay and Randy began to wonder. By age two, Austin’s babbling and new words had all but disappeared. And while he appeared to take no heed of praise or discipline, it never seemed that unusual. But there was no denying, Austin’s behavior and lack of hitting the normal childhood milestones ought to be checked out.
Autism spectrum disorder (ASD) wasn’t something the Lewises knew much about, or had ever even thought about, for that matter. But when the diagnosis came in, life as they knew it changed completely. “It seemed as if our lives had been blown off course and we had crash-landed in uncharted territory,” said Randy. “We didn’t know what lay ahead. It wasn’t what we wanted or expected. But we had to press on.”
In addition to addressing Austin’s seemingly distant, erratic, and explosive behaviors, and doing everything they could to somehow integrate this little boy into the family, Kay and Randy realized they needed help communicating with their son. “When Austin was diagnosed with autism at the age of three, he had virtually no language. We were at our wits’ end when we heard about CHAT,” remembers Randy. “They were lifesavers: patient, understanding, unmatched expertise. They not only gave the gift of language to our son, but they also taught us how to understand his world and how to help him navigate ours.”
“CHAT changes the arc of a child’s life. They help parents see possibilities when others only see deficiencies. Their work brings those into our world who would otherwise likely be condemned to the margins.”Randy Lewis
Austin didn’t start speaking in short sentences until age 10, continuing with therapy for over 20 years. “CHAT changes the arc of a child’s life. They help parents see possibilities when others only see deficiencies,” says Randy. “Their work brings those into our world who would otherwise likely be condemned to the margins.”
Inspired by Austin, Randy has worked tirelessly to bring equity into the workplace for people with disabilities, and has even written a book about it, No Greatness Without Goodness. Like CHAT, he is motivated by compassion, but his resolve is to bring justice for people who are marginalized. “What CHAT did for us was priceless,” says Randy. “We believe every family deserves access to the kind of services CHAT provides. There is no justice if a child is left behind.”
Through generous donations from families like the Lewises, CHAT has been able to provide access to services to children from historically excluded communities who have few—if any—other options. This summer, 65 percent of clients receiving individual services or attending CHAT’s programs received a scholarship of some kind, and more than half have Medicaid. As we continue to emerge from a pandemic that has laid bare the disparities in our health, educational, and justice systems, the need for speech-language services grows. As Randy Lewis indicated, services like CHAT’s should be accessible to every child, including and especially to those for whom their communication disorders and differences contribute to their inequitable treatment. CHAT has worked tirelessly to make that possible to the fullest extent we can—we call this work communication justice. Please consider helping CHAT to help more children like Austin.
In Memoriam: Therapy Dog Bentley, 2013-2021
CHAT lost its beloved therapy dog Bentley to cancer in June, leaving a hole in our hearts for the unique calming presence that only a special therapy dog can provide. Certified through Therapy Dogs International and having completed the “Children Reading to Dogs” program, Bentley knew just what it took to get a child to read to him. “Often a dog can provide the right amount of comfort and unconditional encouragement to get a child to open that book and share it,” said Bentley’s human Ciara Nally. “I think Bentley took it to a whole new level simply because he loved to be with the children.”
We miss you Bentley—every happy, cuddly, and sweet part of you. Thank you, Ciara, for sharing your special pet with us and the children we serve.