Session 11, Individual Papers

New possibilities to improve executive function in Down syndrome: the EXPO project

Silvia Lanfranchi1, Madison Walsh2, Chiara Marcolin1, Miranda Pinks2, Benedetta Ceci1^^2, Kaylyn Van Deusen2, Sara Colaianni1, Nathaniel Riggs2, Sara Onnivello1, Susan Hepburn2, Francesca Pulina1, Lisa Daunhauer2, & Deborah J. Fidler2

  1. University of Padova, Italy
  2. Colorado State University, Colorado, USA

silvia.lanfranchi@unipd.it

Several studies have explored the profile of executive function in Down syndrome showing challenges in several domains, with areas of relative strength, such as emotional control, and area of relative weakness, such as working memory. Moreover, it has been demonstrated how EF are fundamental for learning new skills for daily life, for school achievement, as well as for reducing problem behavior in Down syndrome. For these reasons, one of the big challenges for researchers and professionals working with this population is to find early intervention path to foster EF in preschool children, that might be have a cascade effect on the development of other skills important for daily life. From these premises comes EXPO (Executive Function Play Opportunity) an intervention program to foster EF in preschoolers with DS developed with the joint effort of the Colorado State University and the University of Padova. The idea behind this program is to capitalize the opportunities that daily life offers to exercise EF. The child perform the activities at home with a caregiver. An expert weekly supervise the caregiver. Moreover, the EXPO app offers the opportunity to keep track of progresses. In planning the activities, we did our best to combine a scientific approach with a community-based approach. The qualitative results of a pilot study are encouraging and offer further suggestions to improve the program.

Early developmental profiles in infants with Down syndrome

Sara. Onnivello1, Emily K. Schworer2, Mark A. Prince3, Lisa A. Daunhauer4 & Deborah J. Fidler4

  1. Department of Developmental Psychology and Socialization, University of Padova, Padova, Italy.
  2. Waisman Center, University of Wisconsin-Madison, Madison, WI, USA
  3. Department of Psychology, Colorado State University, Fort Collins, CO, USA
  4. Human Development and Family Studies, Colorado State University, Fort Collins, CO, USA

Contact: sara.onnivello@unipd.it

Background: Down syndrome (DS) generally predisposes children to a pattern of relative developmental strengths and challenges. However, a great deal of within-DS heterogeneity is also observed across developmental dimensions, such as cognition, communication, and motor skills. Characterizing the early origins of heterogeneity in developmental profiles may inform more personalized early intervention approaches.

Research questions: The present research aims to (1) examine whether heterogeneity in early developmental profiles is detectable among infants with DS, and (2) identify associations between early profiles and health-related and environmental factors that might influence early skills acquisition.

Method: Seventy-five infants with DS (M age = 10.04 months, SD age = 4.00, age range: 3.9–17.6 months) completed the Bayley Scales of Infant Development III (BSID-III). In addition, a primary caregiver provided information on their developmental and family history. A latent profile analysis was conducted to identify whether early profiles were present across the five BSID-III domains. Then, the association between chronological age, prematurity, medical conditions, participation in therapies, and DS type and latent probability of profile membership was examined.

Results: Three developmental profiles were observable within the sample: a ‘Mild Delay' Profile, a ‘Moderate Delay' Profile, and a ‘Pronounced Delay' Profile. The Pronounced Delay Profile was characterized by lower scaled scores overall, whereas the highest scores were observed in the Mild Delay Profile. In addition, chronological age, having had heart surgery, and having received occupational therapy were associated with probability of profile membership.

Conclusions: Findings from this study contribute to the growing knowledge-base regarding heterogeneous presentations associated with DS. Characterizing variability in early profiles can facilitate a deeper understanding of early stages of development in infants with DS, improve interpretation of early developmental presentations in clinical and educational settings, and inform individualized intervention planning.

Intensive Voice Treatment (LSVT LOUD®) for Children with Down Syndrome: Phase I Outcomes

Jennifer Gray, jennifer@grayspeaktherapy.com

Carol Boliek, PhD, cboliek@ualberta.ca; Angela Halpern, MS, CCC-SLP angela.halpern@lsvtglobal.com; Keren Hernandez; Cynthia Fox, PhD, CCC-SLP CYNTHIA.FOX@lsvtglobal.com; Lorraine Ramig, PhD, CCC-SLP

This study was the first to examine the effects LSVT LOUD on children with Down syndrome (DS) and motor speech disorders. Children with DS have speech and voice characteristics that are similar to other groups of children (i.e., cerebral palsy, CP) who have been successfully treated using LSVT LOUD. We wanted to know whether or not children with DS would tolerate the full dose of LSVT LOUD, would adhere to daily practice, and would exhibit similar positive changes in speech and voice as those previously reported in children with CP (Boliek & Fox, 2014; 2017; Fox and Boliek, 2012; Langlois et al., 2020; Levy et al., 2012).

Nine children (ages 4 to 6 years) with DS participated and were tested before and after completing LSVT LOUD. We measured intelligibility, vocal functioning, and parent perceptions of communication function. All children completed the full dose of LSVT LOUD and showed gains on one or more of these outcome measures. Parents liked the treatment protocol, perceived benefits from intensive intervention, and indicated they would strongly recommend LSVT LOUD to other parents who have children with DS and motor speech disorders. Our results showed that children with DS tolerated intensive voice treatment without adverse effects and made meaningful therapeutic gains.

The results from this preliminary work suggest that LSVT LOUD may be a viable treatment for children with DS. The single target of using healthy vocal loudness along with clinician modeling lowers the cognitive load for these children and increases communication successes. We know that in order to make meaningful gains in communication, treatment must be intensive, meaningful, functional, and challenging. Our preliminary work shows that these children tolerated the intensity of LSVT LOUD, enjoyed the treatment, and made important gains in communication.

Boliek, C. A., Halpern, A., Hernandez, K., Fox, C. M., & Ramig, L. (2022). Intensive Voice Treatment (Lee Silverman Voice Treatment [LSVT LOUD]) for Children With Down Syndrome: Phase I Outcomes. Journal of speech, language, and hearing research : JSLHR, 65(4), 1228–1262. https://doi.org/10.1044/2021_JSLHR-21-00228

Establishing an AAC-infused Preschool for Children with Down Syndrome along the US-Mexico Border

Amelia Rau, Ph.D. CCC-SLP (Affiliation: University of Texas at El Paso; Down Syndrome Coalition for El Paso) Jessica Quinn, M.S. (Affiliations: New Mexico State University; El Paso Special Needs Education Center – Every Little Blessing Preschool)

Contact: amrau@utep.edu

This session highlights a two-year journey and the guiding research used to incorporate Augmentative and Alternative Communication (AAC) at an inclusive preschool program on the US-Mexico border for children with Down Syndrome. Located in one of the world's largest binational and bilingual communities, this AAC-infused school addresses communication needs for children with and without Down Syndrome along a continuum of verbal ability. The goal of the proposed session is to share early successes and lessons learned regarding technology acquisition, maintenance, personnel training and regular use across curricular routines. Notably, both AAC low-tech core vocabulary boards and high-tech digitized speech output devices are discussed along with initial observations on Spanish and English use. Presently, we are seeking funding to further develop and test a bilingual intervention program. The overall findings of this ongoing project promise to enrich the educational literature base on AAC for young low-verbal children with Down Syndrome who have limited- to non-verbal skills and are exposed to both Spanish and English in their daily interactions. A related goal of this work is to better design educational interventions that incorporate technology while also promoting culturally appropriate, natural and meaningful early communicative abilities for self-determination and social inclusion.