Vol. 29/2020 Issue 58
okładka czasopisma Child Neurology
powiększenie okładki
Journal Info

CHILD NEUROLOGY

Journal of the Polish Society of Child Neurologists

PL ISSN 1230-3690
e-ISSN 2451-1897
DOI 10.20966
Semiannual


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Możliwości i potrzeby dzieci z zespotem Retta


Abilities and needs of children with Rett syndrome






Neurol Dziec 2001; 10, 19: 2-0



STRESZCZENIE
Przedstawiono nowe podejście do poradnictwa w przypadku rozpoznania zespołu Retta. Proponuje ono: 1) postępowanie psychologiczne wobec rodziców, mające na celu wyprowadzenie ich z początkowego wstrząsu, który towarzyszy postawieniu rozpoznania aż do zaakceptowania sytuacji, 2) strategię działania edukacyjnego prowadzacą rodziców do osiagnięcia nowej normalizacji dziecka poprzez uzyskanie umiejętności poznawania jego możliwości i potrzeb. Oba sposoby postępowania będą korzystnie wpływały na jakość życia rodziny

Słowa kluczowe: zespół Retta - poradnictwo, metoda Montessori


ABSTRACT
A new approach to counselling after the diagnosis 'Rett syndrome' is presented. It offers: 1) a psychological coping strategy leading parents from their initial shock to final accept-ance, 2) an educational supporting strategy leading parents to their girl's new normality by deciphering her abilities and needs. Both strategies will contribute to the quality of family life. The results are presented regarding the observation of a nine years old girl with Rett syn-drome during her dialogical interactions with the Montessori therapist. Detailed single pic-ture analyses revealed that she vehemently tried to express her mind through her body in spite of the apparent loss of most motor functions. She seemed to understand spoken words, which were addressed to her, and answered by mimic, sounds and body language. She was able to express her will and to take initiative for own actions (holding and handling an object of her interest; refusing assistance). Her stereotypic hand movements diminished during periods of dialogical activity. Parents seemed not to understand always, what she wanted to express. Unresolved parental grieving and/or reduced expectations can lead to difficulties in captur-ing and interpreting communicative signals of girls with Rett syndrome. The presently avail-able, defect oriented syndrome knowledge may be a reason for too low expectations. Exist-ing strong dependencies between observer's presumptions and subject's visible abilities will lead to positive or negative self-fulfilling prophecies. Based on principles and philosophy of Maria Montessori, our dialogue oriented approach offers a way to see and enhance, what is normal in children with Rett syndrome. It helps to prevent secondary mental disability due to social isolation and cognitive deprivation.

Key words: Rett syndrome, counselling, Montessori methode


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