| Name: | Description: | Size: | Format: | |
|---|---|---|---|---|
| 6.79 MB | Adobe PDF |
Authors
Advisor(s)
Abstract(s)
O Relatório de Atividade Profissional que aqui apresentamos, decorre da
experiência docente de inclusão de um adolescente portador de uma patologia
considerada Doença Rara (a Síndrome de Pfeiffer de tipo 1), por ocorrer numa pequena
e rara minoria de nascimentos numa população, além deste ainda ter aprendido a
(con)viver com a Diabetes Mellitus de tipo 1, no seu quotidiano e desde a primeira
infância.
Abordaremos o meio social e escolar, a que se seguirá uma revisão da literatura
sobre estas duas patologias que pautaram a inscrição do aluno nos serviços da Educação
Especial e refletiremos sobre o diagnóstico com que foi inscrito e para as quais foram
implementadas medidas educativas previstas na lei.
O caso reflete a patologia do aluno (FA) que frequentava o nono ano de escolaridade
do terceiro ciclo do ensino básico, numa escola pública da Região Autónoma da Madeira.
A apresentação do caso contará, ainda, com anexos em que se transcreverão as
entrevistas escritas realizadas com uma geneticista, no que diz respeito à patologia de
ordem genética da Síndrome de Pfeiffer, bem como de uma entrevista à educadora de
infância especializada do FA, responsável pela Orientação Domiciliária, na época em que
se iniciou a intervenção no âmbito da Intervenção Precoce e que poderá elucidar sobre as
dificuldades evidenciadas pelo aluno na época. O presente trabalho centra-se na
apresentação de uma necessidade educativa especial, no ensino regular, indicando-se as
medidas educativas necessárias, bem como os acompanhamentos clínicos e/ou
terapêuticos que o jovem teve para (con)viver com a(s) sua(s) patologia(s).
Far-se-á uma revisão de literatura sobre a Síndrome de Pfeiffer de tipo 1, sobre a
Diabetes Mellitus de tipo I e tentaremos esclarecer porque foi o aluno elegível para os
serviços da educação especial, beneficiando das medidas educativas que permitiriam
aceder e/ou facilitar as suas aprendizagens, junto dos seus pares. Perceber-se-á como e
porque foi inscrito com Perturbação da Coordenação Motora e o que é esta perturbação,
por forma a percebermos, como se insere este diagnóstico na apresentação de um
adolescente com Síndrome de Pfeiffer de tipo 1.
Observaremos de que modo foi efetuado o acompanhamento na Intervenção
Precoce, durante a primeira infância, com a Orientação Domiciliária desta criança e as
razões que levaram a este encaminhamento pelos serviços de saúde regionais. Para orientar o nosso trabalho, intitulámo-lo: “A SÍNDROME DE PFEIFFER DE TIPO 1 E A
DIABETES MELLITUS tipo I…”, sabendo-se, à priori, que um aluno com estas
características é monitorizado, desde tenra idade, pelos serviços de saúde, e encaminhado
para a frequência da escola, pois esta apresenta-se como um dos melhores contextos de
socialização e desenvolvimento de competências.
Esperamos que, ao longo do trabalho, se espelhem as medidas educativas
implementadas e a sua adequada importância para a aquisição das diferentes
competências do aluno; se possa contribuir para um maior conhecimento e características
da Síndrome de Pfeiffer e como poderá e deverá um adolescente fazer frente a uma
patologia crónica-como a Diabetes- no seu quotidiano, sabendo-se que, em alguns dias,
torna-se impeditivo frequentar o espaço escolar.
Não deixaremos esquecido a terapêutica da aplicação da Insulina e explicaremos
quando teve de ser administrada e como ocorre a sua administração em contexto escolar
e/ou domiciliário.
Por último, tentaremos elaborar uma pequena grelha de intervenção em contexto
educativo em que intervêm algumas áreas, por forma a promover, na criança ou jovem, a
oportunidade de exercitar várias competências a adquirir.
This Professional Activity Report originates from the inclusive teaching experience of an adolescent with a pathology considered to be a rare disease (Pfeiffer's syndrome) in his daily life from early childhood. In addition, the teenager had to learn to live with Type 1 Diabetes Mellitus. This syndrome is considered a rare disease because it occurs in a small and infrequent minority of births in a population. The social and school environment will be considered. It will also be followed by a review of the bibliography on these two pathologies, which led to the enrolment of the student in the educational special needs services. It will also reflect on the diagnosis with which the student in question was enrolled in and which educational measures were provided by law. The case reflects the pathology of the student (FA) who attended the ninth year of the third cycle of middle school, in a public school in the Autonomous Region of Madeira. The presentation of the case will have annexes regarding the transcribed interviews of the genetic pathologist of Pfeiffer's Syndrome, as well as FA’s specialized kindergarten teacher, who was responsible for the domiciliary orientation and could elucidate on the difficulties demonstrated by the student at the time. The intervention was started as part of the Early Intervention program. The present dissertation focuses on a special needs case in regular education, demonstrating the necessary educational measures, as well as the supplement clinical and / or therapeutic procedures that the young student had to live with bearing his pathologies in mind. A review of the bibliography on Type 1 Pfeiffer's Syndrome and on Type I Diabetes Mellitus will be done and the reasons why the student was eligible for special needs’ services will be clarified. These led to special educational measures that would allow access and / or facilitate his learning among his equals. We will understand how and why he was registered with Motor Coaching Disorder and what this disorder is, to understand how this diagnosis is inserted in the performance of a teenager with Pfeiffer Syndrome type 1. Early intervention throughout his childhood by child's home guidance and the reasons that lead to its referral by the regional health services will be analysed and accounted for. To guide our task, we have called it: "Pfeiffer Syndrome type 1 and Diabetes Mellitus type I", knowing, a priori, that a student with these characteristics is monitored, from an early age, by the health services, and forwarded to attend school, as this is one of the best socialization and skills’ development contexts. We hope that, throughout the dissertation, the implemented educational measures and their adequate importance in the acquisition of the different skills by the student will be mirrored; contributing to a wider knowledge and characteristics of Pfeiffer Syndrome and how an adolescent can and should cope with a chronic pathology-like Diabetes-in his everyday life knowing that, on some days, it becomes difficult to attend school. The therapeutics of the Insulin application may not be forgotten and its administration, either in school or at home, will be explained. Finally, a small grid obtained from the interviews will be presented. It demonstrates how the families of a holder of Pfeiffer Syndrome and / or Diabetes Mellitus’ life suffers and how they can intervene, in the context of health and education.
This Professional Activity Report originates from the inclusive teaching experience of an adolescent with a pathology considered to be a rare disease (Pfeiffer's syndrome) in his daily life from early childhood. In addition, the teenager had to learn to live with Type 1 Diabetes Mellitus. This syndrome is considered a rare disease because it occurs in a small and infrequent minority of births in a population. The social and school environment will be considered. It will also be followed by a review of the bibliography on these two pathologies, which led to the enrolment of the student in the educational special needs services. It will also reflect on the diagnosis with which the student in question was enrolled in and which educational measures were provided by law. The case reflects the pathology of the student (FA) who attended the ninth year of the third cycle of middle school, in a public school in the Autonomous Region of Madeira. The presentation of the case will have annexes regarding the transcribed interviews of the genetic pathologist of Pfeiffer's Syndrome, as well as FA’s specialized kindergarten teacher, who was responsible for the domiciliary orientation and could elucidate on the difficulties demonstrated by the student at the time. The intervention was started as part of the Early Intervention program. The present dissertation focuses on a special needs case in regular education, demonstrating the necessary educational measures, as well as the supplement clinical and / or therapeutic procedures that the young student had to live with bearing his pathologies in mind. A review of the bibliography on Type 1 Pfeiffer's Syndrome and on Type I Diabetes Mellitus will be done and the reasons why the student was eligible for special needs’ services will be clarified. These led to special educational measures that would allow access and / or facilitate his learning among his equals. We will understand how and why he was registered with Motor Coaching Disorder and what this disorder is, to understand how this diagnosis is inserted in the performance of a teenager with Pfeiffer Syndrome type 1. Early intervention throughout his childhood by child's home guidance and the reasons that lead to its referral by the regional health services will be analysed and accounted for. To guide our task, we have called it: "Pfeiffer Syndrome type 1 and Diabetes Mellitus type I", knowing, a priori, that a student with these characteristics is monitored, from an early age, by the health services, and forwarded to attend school, as this is one of the best socialization and skills’ development contexts. We hope that, throughout the dissertation, the implemented educational measures and their adequate importance in the acquisition of the different skills by the student will be mirrored; contributing to a wider knowledge and characteristics of Pfeiffer Syndrome and how an adolescent can and should cope with a chronic pathology-like Diabetes-in his everyday life knowing that, on some days, it becomes difficult to attend school. The therapeutics of the Insulin application may not be forgotten and its administration, either in school or at home, will be explained. Finally, a small grid obtained from the interviews will be presented. It demonstrates how the families of a holder of Pfeiffer Syndrome and / or Diabetes Mellitus’ life suffers and how they can intervene, in the context of health and education.
Description
Keywords
Síndrome de Pfeiffer Diabetes Necessidades Educativas Especiais Mellitus Inclusão Pfeiffer's syndrome Diabetes Mellitus Educational Special Needs Inclusion