A Puerto Rican Family Living with (Dis)ability Advocating for Cultural Competence and Language Access Rights
By: Brenda Liz Muñoz, M.S.
“Just as we attempt to validate the expansion of a Puerto Rican nation and (re)claim our puertorriqueñidad, we also recognize that even within the Diaspora and Caribbean archipelago there has been many who have been historically excluded from the conversation. This is the reason we proudly publish and encourage the presence and leadership of those from the barrios, mujeres, afrodescendientes, queer and trans folks, and Boricuas living with (dis)ability. And to borrow the words of another Boricua publication for its 40th anniversary, we see “affirming identity as a praxis of solidarity” – Xavi Burgos Peña in “All Hail the Boricua Diaspora”
He is un papisongo color caramelo y chocolate. Fifteen years old. Tall, dark and handsome. Highly intelligent in his own right. An avid naturalist and true outdoorsman, born to a Puerto Rican mother from San Lorenzo, Puerto Rico and a Trinidadian father from Port of Spain. With a repertoire of salsa songs he breakthroughs “in context” to everyday life scenarios like a cocolo reventao: “la, la, la, la, la, la, la / que cante mi gente/ la, la, la, la, la, la” or “buscando guayaba ando yo/ que tenga sabor/ que tenga mendó”.
And he is 1 in 68 children living with ASD, or Autism Spectrum Disorders (1), a neurodevelopmental (dis)ability that renders him nonverbal but in his case with high functioning bilingual receptive language and his “gift” for song and dance. Do not dare to play reguetón, ever, por que el pari is on! His puertorriqueñidad asserted to the maximums with moves so smooth to the “dembow” you will recognize la mancha de plátano from a far. Even through his morning ritual, when his mother calls him to wake up for another high school day, “despierta Boricua, defiende lo tuyo” and he responds to the call to action. (In all actuality he is a “Diasporican” a “Trinirican”, but you get it, right?!)
Individuals living with ASD tend to have communication impairments and social interaction deficits. In addition, may be overly dependent on routines, highly sensitive to changes in their environment, or intensely focused on inappropriate items. Again, the symptoms of individuals with ASD will fall on a continuum, on a spectrum, with some manifesting mild symptoms while others more severe ones (2). Not every puertorriqueño(a) living with autism spectrum disorders is the same nor require the same level of need for services, opportunities or support.
Just last year, in 2013, one of the most important changes in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) is to ASD. The revised diagnosis represents a new, more accurate, and medically and scientifically useful way of diagnosing individuals with autism-related disorders. Under the DSM-5 criteria, individuals with ASD must show symptoms from early childhood, even if those symptoms are not recognized until later. This criteria change encourages earlier diagnosis of ASD but also allows people whose symptoms may not be fully recognized until social demands exceed their capacity to receive the diagnosis. It is an important change from DSM-IV criteria, which was geared toward identifying school-aged children with autism-related disorders, but not as useful in diagnosing younger children (2).
El papisongo was diagnosed at three and a half years old by a developmental pediatrician and with a second opinion by a pediatric neurologist after an onset of regression in his development, and (un)learning of words like “mamá, papá, his fruits and vegetables, alphabet, colors, numbers and “cantar la linda manita y pon, pon, pon el dedito en el pilón.” The term regression refers to a loss of previously acquired skills, such as language, motor, or life skills and a warning sign of ASD in children birth to three years old (3).
By age four el cocolo was in a special education classroom at a premier therapeutic school administered by a children’s hospital. While there, he was offered aggressive early interventions for speech/ language, occupational and physical therapies for his communication delays and sensory integration issues coupled with an adapted curriculum through an IEP (Individualized Educational Plan), required by our nation’s special education law (4).
A public school student who receives special education and related services must have an IEP, which must be designed for one student and must be a truly individualized document. The IEP creates an opportunity for teachers, parents, school administrators, related services personnel, and students (when appropriate) to work together to improve educational results for children with disabilities. The IEP is the cornerstone of a quality education for each child with a disability (4).
To create an effective IEP, parents, teachers, other school staff – and often the student – must come together to look closely at the student’s unique needs. These individuals pool knowledge, experience and commitment to design an educational program that will help the student be involved in, and progress in, the general curriculum. The IEP guides the delivery of special education supports and services for the student with a disability. Without a doubt, writing, and implementing, an effective IEP requires teamwork (4).
¿Pero qué pasa si eres una familia que sólo hablas español? ¿Cómo logras navegar el sistema escolar? ¿Cómo abogas o defiendes los derechos de tu hijo(a) a recibir servicios de educación especial?
What if the parents of el papisongo had been new “Diasporicans” arriving to the mainland, to the southeast states of Alabama, Georgia, Florida and the Carolinas as part of the exodus of families doing so from island-nation? What if they had limited English proficiency and could not communicate their authentic wholehearted concerns, desires, ideas, dreams and visions for their son or daughter living with ASD or any other (dis)ability? What if these are padres puertorriqueños of a pre-school age receiving a new diagnosis? What type of culturally and linguistically appropriate individual, family and community-based services, opportunities and supports are available in within educational systems in these southeastern states?
In Georgia, the Leadership and Education in Neurodevelopmental Disabilities (GaLEND) is an interdisciplinary training program for future professionals, disability advocates, and family members. GaLEND operates as a program of the Center for Leadership in Disability (CLD) at Georgia State University (GSU), in collaboration with the Satcher Health Leadership Institute at Morehouse School of Medicine (MSM) and the National Center on Birth Defects and Developmental Disabilities of the Centers for Disease Control and Prevention. These and other community partners offer the expert faculty and resources necessary to provide exceptional interdisciplinary training and services (5).
Through the Combating Autism Act, Health Resources and Services Administration’s Maternal and Child Health Bureau awarded three-year implementation grants to 18 states to improve access to comprehensive, coordinated health care and related services for children, youth and adults with autism spectrum disorder and related developmental disabilities. United States Department of Health and Human Resources, Maternal and Child Health Bureau also awarded two-year planning grants to four states, including Georgia, to develop plans to guide the next steps in supporting children with autism and their families. The Center for Leadership in Disability at Georgia State University received the Georgia Autism Planning Grant in the fall of 2011, working over the last 18 months with an Advisory Panel to design a structure for the plan, to organize input from varied stakeholders, and to generate preliminary recommendations for next steps that will be included in a three-year implementation fall grant phase starting in the winter of 2014 (6).
Our vision for Georgia is that high-quality, family and person-centered, comprehensive, and coordinated systems of services and supports are accessible and available to all children, youth and adults with autism and related disorders. These services and supports are community-based, geographically convenient, culturally and linguistically appropriate, and are designed to assist children to reach their full potential and improve their quality of life (6).
“En cuarto lleno de gente / y yo sin poderte hablar” will not hinder “Diasporican” Spanish-speaking families living in Georgia eager, and in need, to engage, equip and empower themselves to advocate (or work with an advocate) in educational settings and other systems of care. Nor will the young man, el papisongo, living with autism spectrum disorders who inspired this article quiet his breakthrough voice – I am certain he will sing in context yet other salsa songs: “todo es según el color/ del cristal con que lo miren” or “maestra vida, camará / te da, te quita, te quita y te da”.
¡Claro, soy la mamita linda del cocolo reventao’! I am his strongest advocate, and on a lifelong mission to assist other puertorriqueños(as) and Spanish-speaking individuals, families and communities in the state of Georgia and the southeast region living with ASD, autism spectrum disorders and other (dis)abilities.
Centers for Disease Prevention and Control, Center for Birth Defects and Developmental Disabilities (CDC)
American Psychological Association, DSM-5
American Pediatric Association (APA)
United States Department of Education (DOE) / Individualized Educational Plan (IEP)
GaLEND, Center for Leadership in Disability (CLD), Georgia State University (GSU)
Autism Plan of Georgia, Center for Leadership in Disability (CLD), Georgia State University (GSU)
Brenda Liz Muñoz, M.S. (Master of Science in Education, Foundations and Policy Studies) is a Bilingual, Multicultural Advocate, Cultural Broker, Educator, Interpreter, Translator, and Consultant. She is a member of the Local School Board (Advisory Council); 2014-2015 GaLEND Family Fellow/ Trainee at the School of Public Health, Center for Leadership in Disability of Georgia State University (GSU); and 2014 Partner in Policymaking, All About Developmental Disabilities (AADD)