An approach designed to fail deaf children and their parents and how to change it.

The matter of raising and educating deaf children has been caught up in percepts of development that are persistently inaccurate and at odds with scientific research. These percepts have negatively impacted the health and quality of life of deaf children and deaf people in general. The all too prevalent advice is to raise the child strictly orally and wait to see what happens. Only when the child is seriously behind is a completely accessible language - a sign language - introduced, and that is far too late for protecting cognitive health. The medical profession, along with others, needs to offer parents better advice and better supports so that neither the children nor their parents wait and watch as the oral-only method fails. All must take responsible action to assure an approach that succeeds.

Global Regulatory Review Needed for Cochlear Implants: A Call for FDA Leadership.

INTRODUCTION: Using the United States Food and Drug Administration (FDA) as example, we argue that regulatory agencies worldwide should review their guidance on cochlear implants (CIs). METHODS: This is a position paper, thus the methods are strictly argumentation. Here we give the motivation for our recommendation. The FDA's original approval of implantation in prelingually deaf children was granted without full benefit of information on language acquisition, on childcaregiver communication, and on the lived experience of being deaf. The CI clinical trials, accordingly, did not address risks of linguistic deprivation, especially when the caregiver's communication is not fully accessible to the prelingually deaf child. Wide variability in the effectiveness of CIs since initial and updated approval has been indicated but has not led to new guidance. Children need to be exposed frequently and regularly to accessible natural language while their brains are still plastic enough to become fluent in any language. For the youngest infants, who are not yet producing anything that could be called language although they might be producing salient social signals (Goldstein et al. Child Dev 80:636-644, 2009), good comprehension of communication from caregiver to infant is critical to the development of language. Sign languages are accessible natural languages that, because they are visual, allow full immersion for deaf infants, and they supply the necessary support for this comprehension. The main language contributor to health outcomes is this combination of natural visual language and comprehension in communication. Accordingly, in order to prevent possible language deprivation, all prelingually deaf children should be exposed to both sign and spoken languages when their auditory status is detected, with sign language being critical during infancy and early childhood. Additionally, all caregivers should be given support to learn a sign language if it is new to them so that they can comprehend their deaf children's language expressions fully. However, both languages should be made accessible in their own right, not combined in a simultaneous or total communication approach since speaking one language and signing the other at the same time is problematic. RESULTS: Again, because this is a position paper, our results are our recommendations. We call for the FDA (and similar agencies in other countries) to review its approval of cochlear implantation in prelingually deaf children who are within the sensitive period for language acquisition. In the meantime, the FDA should require manufacturers to add a highlighted warning to the effect that results with CI vary widely and CIs should not be relied upon to provide adequate auditory input for complete language development in all deaf children. Recent best information on users' experience with CIs (including abandonment) should be clearly provided so that informed decisions can be made. The FDA should require manufacturers' guidance and information materials to include encouragement to parents of deaf children to offer auditory input of a spoken language and visual input of a sign language and to have their child followed closely from birth by developmental specialists in language and cognition. In this way parents can align with providers to prioritize cognitive development and language access in both audio-vocal and visuo-gestural modalities. DISCUSSION: The arguments and recommendations in this paper are discussed at length as they come up.

Discourses of prejudice in the professions: the case of sign languages.

There is no evidence that learning a natural human language is cognitively harmful to children. To the contrary, multilingualism has been argued to be beneficial to all. Nevertheless, many professionals advise the parents of deaf children that their children should not learn a sign language during their early years, despite strong evidence across many research disciplines that sign languages are natural human languages. Their recommendations are based on a combination of misperceptions about (1) the difficulty of learning a sign language, (2) the effects of bilingualism, and particularly bimodalism, (3) the bona fide status of languages that lack a written form, (4) the effects of a sign language on acquiring literacy, (5) the ability of technologies to address the needs of deaf children and (6) the effects that use of a sign language will have on family cohesion. We expose these misperceptions as based in prejudice and urge institutions involved in educating professionals concerned with the healthcare, raising and educating of deaf children to include appropriate information about first language acquisition and the importance of a sign language for deaf children. We further urge such professionals to advise the parents of deaf children properly, which means to strongly advise the introduction of a sign language as soon as hearing loss is detected.

Bilingualism: A Pearl to Overcome Certain Perils of Cochlear Implants.

Cochlear implants (CI) have demonstrated success in improving young deaf children's speech and low-level speech awareness across a range of auditory functions, but this success is highly variable, and how this success correlates to high-level language development is even more variable. Prevalence on the success rate of CI as an outcome for language development is difficult to obtain because studies vary widely in methodology and variables of interest, and because not all cochlear implant technology (which continues to evolve) is the same. Still, even if the notion of treatment failure is limited narrowly to those who gain no auditory benefit from CI in that they cannot discriminate among ambient noises, the reported treatment failure rate is high enough to call into question the current lack of consideration of alternative approaches to ensure young deaf children's language development. Recent research has highlighted the risks of delaying language input during critical periods of brain development with concomitant consequences for cognitive and social skills. As a result, we propose that before, during, and after implantation deaf children learn a sign language along with a spoken language to ensure their maximal language development and optimal long-term developmental outcomes.

Language acquisition for deaf children: Reducing the harms of zero tolerance to the use of alternative approaches.

Children acquire language without instruction as long as they are regularly and meaningfully engaged with an accessible human language. Today, 80% of children born deaf in the developed world are implanted with cochlear devices that allow some of them access to sound in their early years, which helps them to develop speech. However, because of brain plasticity changes during early childhood, children who have not acquired a first language in the early years might never be completely fluent in any language. If they miss this critical period for exposure to a natural language, their subsequent development of the cognitive activities that rely on a solid first language might be underdeveloped, such as literacy, memory organization, and number manipulation. An alternative to speech-exclusive approaches to language acquisition exists in the use of sign languages such as American Sign Language (ASL), where acquiring a sign language is subject to the same time constraints of spoken language development. Unfortunately, so far, these alternatives are caught up in an "either - or" dilemma, leading to a highly polarized conflict about which system families should choose for their children, with little tolerance for alternatives by either side of the debate and widespread misinformation about the evidence and implications for or against either approach. The success rate with cochlear implants is highly variable. This issue is still debated, and as far as we know, there are no reliable predictors for success with implants. Yet families are often advised not to expose their child to sign language. Here absolute positions based on ideology create pressures for parents that might jeopardize the real developmental needs of deaf children. What we do know is that cochlear implants do not offer accessible language to many deaf children. By the time it is clear that the deaf child is not acquiring spoken language with cochlear devices, it might already be past the critical period, and the child runs the risk of becoming linguistically deprived. Linguistic deprivation constitutes multiple personal harms as well as harms to society (in terms of costs to our medical systems and in loss of potential productive societal participation).

Deaf Children Need Rich Language Input from the Start: Support in Advising Parents.

Bilingual bimodalism is a great benefit to deaf children at home and in schooling. Deaf signing children perform better overall than non-signing deaf children, regardless of whether they use a cochlear implant. Raising a deaf child in a speech-only environment can carry cognitive and psycho-social risks that may have lifelong adverse effects. For children born deaf, or who become deaf in early childhood, we recommend comprehensible multimodal language exposure and engagement in joint activity with parents and friends to assure age-appropriate first-language acquisition. Accessible visual language input should begin as close to birth as possible. Hearing parents will need timely and extensive support; thus, we propose that, upon the birth of a deaf child and through the preschool years, among other things, the family needs an adult deaf presence in the home for several hours every day to be a linguistic model, to guide the family in taking sign language lessons, to show the family how to make spoken language accessible to their deaf child, and to be an encouraging liaison to deaf communities. While such a support program will be complicated and challenging to implement, it is far less costly than the harm of linguistic deprivation.

Correlations Between Handshape and Movement in Sign Languages.

Sign language phonological parameters are somewhat analogous to phonemes in spoken language. Unlike phonemes, however, there is little linguistic literature arguing that these parameters interact at the sublexical level. This situation raises the question of whether such interaction in spoken language phonology is an artifact of the modality or whether sign language phonology has not been approached in a way that allows one to recognize sublexical parameter interaction. We present three studies in favor of the latter alternative: a shape-drawing study with deaf signers from six countries, an online dictionary study of American Sign Language, and a study of selected lexical items across 34 sign languages. These studies show that, once iconicity is considered, handshape and movement parameters interact at the sublexical level. Thus, consideration of iconicity makes transparent similarities in grammar across both modalities, allowing us to maintain certain key findings of phonological theory as evidence of cognitive architecture.

Expanding Echo: Coordinated Head Articulations as Nonmanual Enhancements in Sign Language Phonology.

Echo phonology was originally proposed to account for obligatory coordination of manual and mouth articulations observed in several sign languages. However, previous research into the phenomenon lacks clear criteria for which components of movement can or must be copied when the articulators are so different. Nor is there discussion of which nonmanual articulators can echo manual movement. Given the prosodic properties of echoes (coordination of onset/offset and of dynamics such as speed) as well as general motoric coordination of various articulators in the human body, we expect that the mouth is not the only nonmanual articulator involved in echo phonology. In this study, we look at a fixed set of lexical items across 36 sign languages and establish that the head can echo manual movement with respect to timing and to the axis/axes of manual movement. We propose that what matters in echo phonology is the visual percept of temporally coordinated movement that repeats a salient movement property in such a way as to give the visual impression of a copy. Our findings suggest that echoes are not obligatory motor couplings of two or more articulators but may enhance phonological distinctions that are otherwise difficult to see.

Engaging patients and parents to improve mental health intervention for youth with rheumatological disease.

BACKGROUND: Mental health disorders are common in youth with rheumatological disease yet optimal intervention strategies are understudied in this population. We examined patient and parent perspectives on mental health intervention for youth with rheumatological disease. METHODS: We conducted a mixed methods cross-sectional study, via anonymous online survey, developed by researchers together with patient/parent partners, to quantitatively and qualitatively examine youth experiences with mental health services and resources in North America. Patients ages 14-24 years with juvenile idiopathic arthritis, juvenile dermatomyositis, or systemic lupus erythematous, and parents of patients ages 8-24 with these diseases were eligible (not required to participate in pairs). Participants self-reported mental health problems (categorized into clinician-diagnosed disorders vs self-diagnosed symptoms) and treatments (e.g. therapy, medications) received for the youth. Multivariate linear regression models compared patient and parent mean Likert ratings for level of: i) comfort with mental health providers, and ii) barriers to seeking mental health services, adjusting for potential confounders (patient age, gender, disease duration, and patient/parent visual analog score for disease-related health). Participants indicated usefulness of mental health resources; text responses describing these experiences were analyzed by qualitative description. RESULTS: Participants included 123 patients and 324 parents. Patients reported clinician-diagnosed anxiety (39%) and depression (35%); another 27 and 18% endorsed self-diagnosed symptoms of these disorders, respectively. 80% of patients with clinician-diagnosed disorders reported receiving treatment, while 11% of those with self-diagnosed symptoms reported any treatment. Patients were less comfortable than parents with all mental health providers. The top two barriers to treatment for patients and parents were concerns about mental health providers not understanding the rheumatological disease, and inadequate insurance coverage. Over 60% had used patient mental health resources, and over 60% of these participants found them to be helpful, although text responses identified a desire for resources tailored to patients with rheumatological disease. CONCLUSION: Self-reported mental health problems are prevalent for youth in this sample with rheumatological disease, and obstacles to mental health treatment include disease-related and logistic factors. Strategies are needed to improve acceptance and accessibility of mental health intervention, including routine mental health screening and availability of disease-specific mental health resources.

Infants and children with hearing loss need early language access.

Around 96 percent of children with hearing loss are born to parents with intact hearing, who may initially know little about deafness or sign language. Therefore, such parents will need information and support in making decisions about the medical, linguistic, and educational management of their child. Some of these decisions are time-sensitive and irreversible and come at a moment of emotional turmoil and vulnerability (when some parents grieve the loss of a normally hearing child). Clinical research indicates that a deaf child's poor communication skills can be made worse by increased level of parental depression. Given this, the importance of reliable and up-to-date support for parents' decisions is critical to the overall well-being of their child. In raising and educating a child, parents are often offered an exclusive choice between an oral environment (including assistive technology, speech reading, and voicing) and a signing environment. A heated controversy surrounds this choice, and has since at least the late 19th century, beginning with the International Congress on the Education of the Deaf in Milan, held in 1880. While families seek advice from many sources, including, increasingly, the internet, the primary care physician (PCP) is the professional medical figure the family interacts with repeatedly. The present article aims to help family advisors, particularly the PCP and other medical advisors in this regard. We argue that deaf children need to be exposed regularly and frequently to good language models in both visual and auditory modalities from the time hearing loss is detected and continued throughout their education to ensure proper cognitive, psychological, and educational development. Since there is, unfortunately, a dearth of empirical studies on many of the issues families must confront, professional opinions, backed by what studies do exist, are the only option. We here give our strongly held professional opinions and stress the need for improved research studies in these areas.

Manual Movement in Sign Languages: One Hand Versus Two in Communicating Shapes.

In sign languages, the task of communicating a shape involves drawing in the air with one moving hand (Method One) or two (Method Two). Since the movement path is iconic, method choice might be based on the shape. In the present studies we aimed to determine whether geometric properties motivate method choice. In a study of 17 deaf signers from six countries, the strongest predictors of method choice were whether the shape has any curved edges (Method One), and whether the shape is symmetrical across the Y-axis (Method Two), where the default was Method One. In a second study of ASL dictionary entries for which the movement path of the sign is iconic of an entity's shape, the same predictors surfaced. These tendencies are captured in the Lexical Drawing Principle, which is coherent with biological constraints on movement in general. Drawing in the air with two hands, however, is costly, both cognitively and biomechanically. Furthermore, it distinguishes signers from non-signers, who draw shapes with only one hand. Signers assume this extra cost in the lexicon because of the enhanced iconicity the possibility of two hands offers; they assume it in drawing shapes in the air because they apply the same linguistic principle they use in the lexicon. Additionally, having a choice of methods allows the signer to benefit from over-specification in providing redundant information about the shape, enhancing comprehensibility and resolving ambiguity.

Support for parents of deaf children: Common questions and informed, evidence-based answers.

To assist medical and hearing-science professionals in supporting parents of deaf children, we have identified common questions that parents may have and provide evidence-based answers. In doing so, a compassionate and positive narrative about deafness and deaf children is offered, one that relies on recent research evidence regarding the critical nature of early exposure to a fully accessible visual language, which in the United States is American Sign Language (ASL). This evidence includes the role of sign language in language acquisition, cognitive development, and literacy. In order for parents to provide a nurturing and anxiety-free environment for early childhood development, signing at home is important even if their child also has the additional nurturing and care of a signing community. It is not just the early years of a child's life that matter for language acquisition; it's the early months, the early weeks, even the early days. Deaf children cannot wait for accessible language input. The whole family must learn simultaneously as the deaf child learns. Even moderate fluency on the part of the family benefits the child enormously. And learning the sign language together can be one of the strongest bonding experiences that the family and deaf child have.

Should All Deaf Children Learn Sign Language?

Every year, 10,000 infants are born in the United States with sensorineural deafness. Deaf children of hearing (and nonsigning) parents are unique among all children in the world in that they cannot easily or naturally learn the language that their parents speak. These parents face tough choices. Should they seek a cochlear implant for their child? If so, should they also learn to sign? As pediatricians, we need to help parents understand the risks and benefits of different approaches to parent-child communication when the child is deaf [corrected].

Order of the major constituents in sign languages: implications for all language.

A survey of reports of sign order from 42 sign languages leads to a handful of generalizations. Two accounts emerge, one amodal and the other modal. We argue that universal pressures are at work with respect to some generalizations, but that pressure from the visual modality is at work with respect to others. Together, these pressures conspire to make all sign languages order their major constituents SOV or SVO. This study leads us to the conclusion that the order of S with regard to verb phrase (VP) may be driven by sensorimotor system concerns that feed universal grammar.

The right to language.

We argue for the existence of a state constitutional legal right to language. Our purpose here is to develop a legal framework for protecting the civil rights of the deaf child, with the ultimate goal of calling for legislation that requires all levels of government to fund programs for deaf children and their families to learn a fully accessible language: a sign language.