Rett girl pupils at the primary school ZS Zahradka
In the previous past years, seven girls with the Rett Syndrome (RTT) have been attending the primary school “Zahradka” in Prague. It is a rather unusual experience due to a frequency of occurrence of girls with RTT in Czech population. Thanks to this experience we had a great opportunity to learn a lot from the Rett girl pupils.
At present, there are five Rett girls and one girl with the Angelman Syndrome attending “Zahradka”. The pupils have been studying according to the individual study plans. Their individual plans are regularly updated by team of school teachers and specialists. A cooperation with parents is very important – parents communicate with teachers and specialists everyday while handing over the girls, as well as twice a year over the preparation of the individual study plans. The relationship between the school and parents is very friendly – apart from the above mentioned the school is meeting the parents on several other occasions like the school festivals or arts & crafts workshops. The girls are able to be involved in many different activities organized by school, which is closely cooperating with the welfare services provider – the integration center IC Zahrada (ICZ), as for example trips, parties, or they are provided respite care. Once a year, the school offers a small get-together – it is open to all Rett girls’ parents, also to those whose girls do not attend “Zahradka”. The parents have an opportunity to talk about the most urgent and important issues.
The Rett girls’ education is organized as a combination of group and individual lessons. The girls take part either in an activity in their classrooms together with other children with various, mainly combined handicaps, or they attend according to their individual study plan different school lessons and therapies. Among the therapies are for example: physiotherapy, ergo-therapy, canine therapy, music-therapy, basal stimulation, hippo-therapy, water-therapy, or swimming. The girls also visit a special therapy room – snooze-land, music-therapy room, or visual room.
One of the girls also attends once a week for an hour a regular kindergarten with a personal assistant.
This year, the school has bought three iPads and we are all looking forward discovering new options and possibilities in expanding communication skills and abilities of our girls. Until now, we were using voice communicators, symbols, photographs, and the alternative picture communication symbols. We are helping with a creation of the communication books and tables. We are not using facilitated communication, although we know about it. I personally have a great experience, and I find very helpful a method by Mrs. Linda Burkhard.
The Rett girls’ education is a great challenge for both teachers and parents, and it is also a great adventure and seeking. The young and new teachers are very often lost. A Rett girl needs an assistant and elaborated study program, and her teachers support and enough educational materials and facilities.
I see the biggest weakness of education of Rett girls in the Czech Republic in an insufficient, mainly financial support from the state – there are not enough finances for personal school assistants – and we all know how demanding and difficult is education of girls with the RTT.
The special pedagogical centers (SPC) in each region or a big city offer support – methodical or diagnostic – to the children with special needs. However, in many cases, due to low capacity, these centers are unable to provide an adequate support to the teachers and girls. A situation, however, varies from town to town. Unfortunately, very often parents are individually seeking financially resources to cover the personal assistant for their girls. However, it always depends on an individual approach of involved staff – the school directors, the SCP employees, parents, the local authorities, sponsors etc.
We have launched a new project this year called ‘Good experience in education of the Rett girls’. By sharing our experience via email, we are comparing and enhancing our experience. The project involves school teachers and parents from all over the Czech Republic. We are at the beginning, however, the first positive reactions and responses indicate positive direction and they give a good feeling of support and new ideas in education of the Rett girls.
Mgr. Mirka Tupa Prague 4. 12. 2013
Translated by Mgr. Ivana Hanus (mum to Paulinka, RTT)