Complex Communication Needs of a Child with Dandy-Walker Syndrome and Mucopolysaccharidosis Type II Case Study

Agnieszka Kamyk-Wawryszuk

doi:10.18778/2544-7238.05.05

Authors

Agnieszka Kamyk-Wawryszuk Uniwersytet Kazimierza Wielkiego w Bydgoszczy, Wydział Pedagogiki, Katedra Pedagogiki Specjalnej i Logopedii, ul. Powstańców Wlkp. 2, 85-090 Bydgoszcz https://orcid.org/0000-0002-0545-6416

DOI:

https://doi.org/10.18778/2544-7238.05.05

Keywords:

complex communication needs, rare disease, Dandy-Walker syndrome, mucopolysaccharidosis type II

Abstract

There exist few publications describing the cases of children diagnosed with two rare diseases. Most of them are medical case studies. The purpose of the research was to describe the complex communication needs of a child and the resulting needs in the area of me as a person and in the home, social, educational, therapeutic and medical environment.

The research involved a boy in early school age diagnosed with the Dandy-Walker syndrome and mucopolysaccharidosis type II (Hunter syndrome). The research was embedded in qualitative orientation using an individual case study. The research was conducted over a period of four years (2016 to 2020).

The complex communication needs diagnosed in the boy triggered the following needs in the area of “me as a person”: to notice the effects of one’s actions, to have a sense of being a member of a group, to engage in activities that will help develop one’s own competencies and gain experience, and to be included in group activities. The research suggests that all of the above mentioned needs exist in the home and social environment area. In terms of education, it was determined that there is no need for a teaching assistant/aide who would know alternative methods of communication and could adapt the classroom to multimodal communication and train other persons. In terms of therapy, there was no need to create a controlled space in an institution, as therapy, the same as education, takes place in the boy’s home. In terms of medical care, Adam has all the above mentioned needs.

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