Chatting with Haley and Poppy

Holiday Greeting

Big Step Forward for Non-verbal Children

 

We finally have a team behind us. Notre Dame University has stepped up to the plate to address the needs of all children who have severe neurodevelopmental disabilities. The University Neuro Team has been formed and is led by our principal investigator Jarek Nabrzyski,  Director, Center for Research Computing, Concurrent Professor in the Department of Computer Science and Engineering; Michal Kosiedowski, Director of Future Internet Services at the Poznan Supercomputing Networking Center, an Institute within the Polish Academy of Sciences. Michal was the PI for a groundbreaking development of a Translator for the non-verbal language of children who have profound learning and multiple disabilities; and last but not least is the Chatting with Haley and Poppy team.

Our non-verbal children are customarily labeled profoundly learning disabled, as if they have nothing to say. However they are one of many categories of people deprived of speech due to developmental factors, accident, illness, mental health or aging.

Our Neuro Tech Team has completed a draft of a concept paper to address this need. Fundamentally it is an Information Communication Technology project designed to  bring the research into the home, school or institution. It will allow for transmission of any form of physiological or neural data 24/7/365. Our goal is to present our plan to the National Institute of Health (NIH) in January 2024.

It will require unification and synchronization of many scientific fields, which heretofore has not been the case. In the normal course of communication, we rely not only on words but gestures, body movement, posture, tone of the utterance, physiological condition, social setting, environmental conditions, and social status to determine intent and meaning. These various modalities of nonverbal communication are performed by all of us as a suite and their use is idiosyncratic and influenced by cultural factors.

This project is a unique long term developmental effort requiring many institutions. It will also require installation of equipment into homes, schools and institutions. We have already had discussions with very large internet provider and they are eager to assist.

Thanks for your support over the years. A special shout out goes to The International Foundation for CDKL5 Research and LouLou Foundation who co-hosted a Patient-Focused Drug Development Meeting (PFDD) in November 2019 for the U.S. Food and Drug Administration (FDA). There,families made it quite clear their need for communication with their non-verbal children was a number one priority.

Haley and Poppy

 

https://poppyandhaley.com/671-2/

A PATH TO TRANSLATE THE LANGUAGE OF NONVERBAL CHILDREN 

Edward Fennell

Haley Hilt

 

In 1985 Michael Brown and Joseph Goldstein were awarded the Nobel Prize in Medicine for their discoveries concerning the regulation of cholesterol metabolism. Their work set the foundation for drugs we now know as statins. The history of medicine is replete with examples of rare conditions research having universal application. The systemic problems of children with rare diseases affecting both motor and intellectual pathways are no different.

Too often their disabilities prevent them from being interrogated and they are considered as profoundly learning disabled, as if they have nothing to say. For reasons that appear more discriminatory rather than scientific they are customarily excluded from conventional research (Russell et al). However there is research indicating people with profound disabilities have  preserved cognition and vocabulary, (Corderre et al). There is also evidence that autism spectrum disorders may be  similar to locked-in syndrome (Pines et al). Thus they may be only one of many categories of people deprived of speech due to developmental factors, accident, illness, mental health or aging. 

These children offer unique opportunities for cognitive neuroscience to delve deeply into the intricacies of the relationship between the motor and cognitive domains. (Veldman et al). Research projects focused on their nonverbal communication patterns will have universal impact and will open this door. Research projects that can translate wants and needs into intentional autonomous actions will prove especially valuable giving agency to people with severe disabilities.

Unlocking the nonverbal communication patterns will also prove especially valuable to medical professionals and caregivers who seek information necessary for effective treatments, therapeutic interventions or discourse.  

In the normal course of communication we rely not only on words but gestures, body movement, posture, tone of the utterance, physiological condition, social setting, environmental conditions, and social status to determine intent and meaning. These various modalities of nonverbal communication are performed by all of us as a suite and their use is idiosyncratic and influenced by cultural factors  (Bellieni 2022). 

There is evidence  that “assessment of functional (nonverbal) communication is increasingly used in large-scale randomized controlled trials as the primary outcome measure” However, “there is little knowledge about how commonly used measures of functional communication relate to each other”, (Schumacher et al). 

As is customary in science, research is specialized: one chooses facial expression, another vocalization, another body movement and so on. One such example is the work of the MIT Media Lab where nonverbal vocalizations are seen as speech. (Narain, Johnson)  A supplemental work focused on vocalizations that demonstrate “the need and potential for specialized, naturalistic databases and novel computational methods to enhance translational communication technologies in underserved populations”. (Narain, Johnson). Integration of all nonverbal modalities is necessary to provide the answers caregivers and clinicians seek. 

Given the multimodal complexity of non-verbal communication, its idiosyncratic usage, unconscious application and a myriad of social situations in which it is exercised, a unique platform for collecting this data is necessary. It will require a unification of sciences to perform the research. The sciences focused on its discrete modalities (ie: facial expression, vocalizations etc.) will require it to partner with artificial intelligence, machine language and ambient technology. Data analysis will replace the reliance on subjective evaluations. This will enable the assembly of digital profiles of large numbers of nonverbal individuals without the customary restrictions of reductive and exclusion selection criteria usually required of studies focused on singular diagnostic categories. Such systems allow for the full range of genotypes  and phenotypes and the idiosyncratic profile of each person , while providing opportunities for research to classify differences in nonverbal communication patterns by genotype and phenotype. 

The number one priority of parents caring for nonverbal children is communication. “Most parents of non-verbal children would agree that communication is at the top of the symptoms list they would like addressed.” (ORCA Study). Recent work at the MIT Media Lab (ECHOS) focused on nonverbal children’s vocalizations, These works typify current works. They recognize that nonverbal communication is important and multimodal, yet often rely on subjective classification or are unimodal.

In 2013 an article appeared in the Child Development Research journal which reported the results of field study focused on nonverbal ASD children in the classroom. The study revealed that the natural setting approached with structured and informed methodologies will reveal behavioral patterns that cannot be produced in laboratory settings. One of the naturalistic settings that is rich in data on the nonverbal communication patterns of nonverbal children is of course, the home. It is there that researchers may find parents and caregivers who are already skilled in the idiosyncratic nonverbal communication patterns of their children. However, parents and caregivers cannot expect to provide the rigor of high quality good research, nor could it sustain the costs required of quality research and sufficient sample size.

In 2019 a paper appeared in the Proceedings of the SAI Intelligence System Conference on  Applying Ambient Intelligence to Assist People with Profound Intellectual and Multiple Disabilities. The application was named the INSENSION project and it was funded by the European Union Horizon 2020 Initiative. It was a consortium of computer scientists, experts in special education and professionals in care provision. Their purpose was to design and develop an Information and Communication Technology (ICT) platform to support people who are nonverbal and have profound learning and multiple disabilities (PLMD). It acknowledged that “for people with profound intellectual and multiple disabilities (PIMD), interaction with the environment is not so easy. In most cases, they are probably dependent on family and caregivers to carry out even basic functions due to severe physical and sensory impairments.”. 

The Insension system is designed to monitor the primary user (child) and their surroundings to detect meaningful behavioral signals.  These  signals  are  interpreted  as  the  user  intent. The system is designed to assist them in carrying out that intent such as switching a light or communicating that intent to a caregiver. It is also designed to capture idiosyncratic nonverbal language without regard to genotype or phenotype and thus opens new possibilities of comparative research well beyond language. 

The Insension Project is an endeavor of the Health Division of the Poznan Supercomputing Networking Center (PSNC), an affiliate of the Institute of Bioorganic Chemistry of the Polish Academy of Sciences. The initial prototype was developed under a grant from the European Union. They have initiated Insension 2.0 and are seeking partners for both technological and application technologies. 

Lastly, we want to mention that the gateway to  cognition  is attention. The platform will allow for extensive observation of nonverbal people with the ability to analyze the objects of their attention, research impossible in short term lab visits. PSNC is aware of the necessity of making such a platform scalable for multiple uses and economically feasible for multiple installations.

We will keep you posted as we meet with them biweekly. 

Poppy an Haley 

Chatting with Haley and Poppy is a platform to advocate for children who are non verbal and diagnosed with neurodevelopmental disabilities including  epileptic encephalopathy. In ensuing posts we will publish articles from journals that we rate as FIVE STAR and advocate for this population.

☆☆☆☆☆ Advancing inclusive research with people with profound and multiple learning disabilities through a sensory-dialogical approach

Journal of Intellectual Disabilities

Volume 27 Issue 1, March 2023

“People with profound and multiple learning disabilities are often excluded from the processes of knowledge production and face barriers to inclusion in research due to cognitive and communicative challenges. Inclusive research—even when intending to be inclusive—tends to operate within criteria that exclude people with profound and multiple learning disabilities. The aim of this article is to provide a state-of-the-art review of the topic of inclusive research involving people with profound disabilities and thereby challenge traditional assumptions of inclusive research.”

 

Contact:  Ed Fennell efennell43@gmail.com

838 218 4337  Please call or email with your comments or suggestions for feature articles

 

Chatting with Haley and Poppy

Editor’s Note: Chatting with Haley and Poppy is a platform to advocate for children who are nonverbal. The recipients of this mail are either current correspondents or professionals in the field. By all means suggest articles or make comments by email or phone listed below.

A PATH TO TRANSLATE THE LANGUAGE OF NONVERBAL CHILDREN

In 1985 Michael Brown and Joseph Goldstein were awarded the Nobel Prize in Medicine for their discoveries concerning the regulation of cholesterol metabolism. Their work set the foundation for drugs we now know as statins. It was In the 1970s, when they began studying a rare metabolic disorder, familial hypercholesterolemia. The history of medicine is replete with examples of rare conditions research having universal application. The systemic problems of children with rare diseases affecting both motor and intellectual pathways are no different.

Too often their disabilities prevent them from being interrogated and they are considered as profoundly learning disabled, as if they have nothing to say. For reasons that appear more discriminatory rather than scientific they are customarily excluded from conventional research (Russell et al). However, there is research indicating people with profound disabilities have preserved cognition and vocabulary, (Corderre et al). There is also evidence that autism spectrum disorders may be similar to locked-in syndrome (Pines et al). Thus, they are only one of many categories of people deprived of speech due to developmental factors, accident, illness, mental health or aging.

These children offer unique opportunities for cognitive neuroscience to delve deeply into the intricacies of the relationship between the motor and cognitive domains. (Veldman et al)
Research projects focused on their nonverbal communication patterns will have universal impact and will open this door. Research projects that can translate wants and needs into intentional autonomous actions will prove especially valuable giving agency to children with severe disabilities.

Unlocking the nonverbal communication patterns will also prove especially valuable to medical professionals and caregivers who seek information necessary for effective treatments, therapeutic interventions or discourse.

In the normal course of communication, we rely not only on words but gestures, body movement, posture, tone of the utterance, physiological condition, social setting, environmental conditions, and social status to determine intent and meaning. These various modalities of nonverbal communication are performed by all of us as a suite and their use is idiosyncratic and influenced by cultural factors (Bellieni 2022).

There is evidence that “assessment of functional (nonverbal) communication is increasingly used in large-scale randomized controlled trials as the primary outcome measure” However, “there is little knowledge about how commonly used measures of functional communication relate to each other”, (Schumacher et al).

As is customary in science, research is specialized: one chooses facial expression, another vocalization, another body movement and so on. One such example is the work of the MIT Media Lab where nonverbal vocalizations are seen as speech. (Narain, Johnson) A supplemental work focused on vocalizations demonstrates “the need and potential for specialized, naturalistic databases and novel computational methods to enhance translational communication technologies in underserved populations”. (Narain, Johnson)

However, integration of all nonverbal modalities is necessary to provide the answers caregivers and clinicians seek.

In our next post we will introduce technologies that provide a platform for such integration.

Contact: Ed Fennell efennell43@gmail.com
838 218 4337
Please call or email with your comments or suggestions for feature articles

Chatting with Haley and Poppy is a platform to promote research on the preserved cognition of nonverbal children. Unable to be interrogated, there is a presumption that these children have nothing to say. In fact, there is research indicating people with profound disabilities have receptive vocabulary yet are unable to say those words. (Corderre et al).

These children are not atypical. There is evidence children with autism spectrum disorders are locked-in (Pines et al). They are only one of many categories of people deprived of speech due to developmental factors, accident, illness, mental health or aging. 

Yet, all pose a significant problem for medical professionals and caregivers who seek information necessary for effective treatments, therapeutic interventions or social discourse.  Hence, research exploring nonverbal communication is crucial to medicine and all patients deprived of speech. 

In the normal course of communication, we rely not only on words but gestures, body movement, posture, tone of the utterance, physiological condition, social environment, environmental conditions, and social status to determine intent and meaning. In dealing with those with language impairments whether temporary or permanent, it is necessary to consider the full range of functional communication (Bellieni 2022). 

There is evidence that “assessment of functional communication is increasingly used in large-scale randomized controlled trials as the primary outcome measure” However, “there is little knowledge about how commonly used measures of functional communication relate to each other”, (Schumacher et al). And there is even less knowledge of potential application to nonverbal children with neurodevelopmental disorders.

As is customary in science, research is specialized. Labs may specialize: this one choosing facial expression, another vocalization, another body movement and so on. Integration is necessary to provide the answers caregivers and clinicians seek. These various modalities of functional nonverbal communication are performed as a suite and their use is idiosyncratic. They are driven, not only by genetic inheritance, but culture, environment and social conditions. The permutations and interpretations are in.

Nevertheless, it is important to acknowledge that at some time in our life we were or will be deprived of language.