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Rett syndrome

Publication on Rett syndrome

Publication on Rett syndrome Dear Friends,

we would like to offer you our publication on Rett syndrome, which we put together on the basis of our experiences from ...
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A mother’s view

A mother’s view I’ll skip the period when we first learned the diagnosis and the long journey that we have completed since then. I want to share a little victory with you.
From my ...
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Rett Community meetings of parents and friends at Zahrádka in 2017

Rett Community meetings of parents and friends at Zahrádka in 2017

On 21 April and 10 November 2017, Zahrádka hosted two more meetings of parents and friends of girls with Rett Syndrome. At the spring meeting, chairperson Lenka Kohoutková presented a freshly published methodology titled Hádej, co nás baví (Guess What We Like to Do), which contains numerous ideas for activization exercises suitable for girls with Rett

Syndrome that can be a source of inspiration for parents, teachers, and other care-givers. The fall meeting featured a lecture by physiotherapist Marcela Wadowská from the Zahrada Integration Center on the subject of How to Spare Your Back – a very topical issue for any long-term care-givers working with handicapped children. In addition to seeing video examples, participants also got the chance to try out various methods and to practice various exercises under the guidance of a physical therapy expert.

Advent meeting of Rett Community at Zahrádka

On Friday, 2 December 2016 our school hosted another meeting of parents and friends from the Rett Community. The afternoon was led by ergotherapist Růženka Kroupová from the Zahrada Integration Center, who talked about the concept of basal stimulation and her experience using this technique for girls with Rett Syndrome. Participants got to try out some of the techniques on each other, which they agreed was a very valuable experience.


Spring gathering – 22 April 2016

Spring gathering – 22 April 2016

On 22 April 2016, our school hosted the regular spring meeting of parents and friends of girls with Rett Syndrome. The subject this time was ergotherapy. Our colleague Růžena Kroupová from the Zahrada Integration Center provided an overview of the areas she focuses on in ergotherapy, and also presented brief practical demonstrations.

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Rett Community meeting of parents and friends

Rett Community meeting of parents and friends

Physical therapy for girls with Rett Syndrome continues to be a much discussed topic. During our meeting on Friday, 20 November 2015, we and our guests heard a lecture by physical therapist Marcela Wadowská from the Zahrada Integration Center, who had been invited by the parents from the Rett Community to discuss this subject. The afternoon program also included short hands-on demonstrations with our young pupils Evička and Kačenka. At the end, there was room for questions. Thanks you, Marcela, for sharing your extensive professional experience. We wish all families much joy during the upcoming Christmas season…

20. 11. 2015

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For more information on the meeting, visit the Rett Community website HERE.

 


Experience from Finland

On Wednesday 25 March 2015, we welcomed a special visitor to our school – Mrs. Marjo Lamminen from Finland. This smiling mother of a girl with Rett syndrome had previously visited us with her daughter in June 2013 in order to compare her experiences and methods with ours. During this year’s visit, which was organized in cooperation with the Rett Community, we saw a video of working with the Tobii eye-controller for computers. Mrs. Lamminen showed us how her daughter can not only play computer games but also successfully communicate using her eyes to control a computer. She also shared some interesting information on the Tobii’s availability in Finland, and recommended programs that she and her daughter had found useful. For parents who already have experience with this aid, it was an opportunity to compare the situation here with that abroad; for others, it was an amazing inspiration. Mrs. Lamminen captivated many of the mothers and teachers and confirmed our conviction that Tobii has a place in special educational practice. Thank you for the pleasant and stimulating get-together!


Gathering of parents and friends of girls with Rett syndrome at the Zahrádka Primary School in September 2014

After a longer break, in late September we again held a meeting for parents of girls with RTT. Several regular attendees couldn’t make it this time (Evička Boušová with her parents, and the ...
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Gathering of parents and friends of girls with Rett syndrome

Gathering of parents and friends of girls with Rett syndrome

As is practically tradition, the meeting was held after a longer break, and so the participants’ enthusiasm was all the greater. We first listened to a presentation about the Tobii computer, after which we talked about ourselves, our expectations. and the experiences we would like share with each other. Tonička and Evička were in the care of our volunteers Marie, Aneta, Gabriela and Lucie.

Thank you.

On 1 April 2014, several teachers met for a talk with Lenka Kohoutková, a long-time assistant for a girl with Rett syndrome and a board member of the Rett Community civic association. She gave us a vibrant description of her experiences from a Dutch workshop at the international Rett syndrome conference. We discussed the use of the Big Mac switch at schools in Israel and the Netherlands, forms of communication, and ideas for school activities for girls with RTT. The meeting was pleasant and inspirational, and we are looking forward to working together in the future.

M. Tupá



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