The Hungarian Rett Syndrome Foundation has been organizing therapeutic summer camps for girls with Rett Syndrome every year since 1995. This year they took place in Hajdúszoboszló on two occasions in July and August.
Organizing a holiday with activities for the children is an important part of the foundation’s parental support programs, because during the summer camp the parents have the opportunity to organize their own programs and relax, while special education teachers and special education assistants are with children. The girls are all with multiple special needs and in need of full care, so organizing the camp involves a lot of coordination and preparation.
The framework of the camp’s program consists of the therapies, where the girls and their helpers participate in music therapy and craft classes in smaller groups. One of the most characteristic symptoms of Rett syndrome includes hand stereotypes and some degree of deterioration in hand function. In the craft classes we have the opportunity to develop manipulation and fine motor skills, as well as to experience new, interesting and unusual tools and materials. During the sessions, girls were also introduced to various paints, held, played with and baked plasticine. Of course, the making of the memorial could not be missed either. This year the girls made a textile bag with the aid of helpers and sent a handmade postcard home at the end of the camp. The therapies were expanded with the experience and tasting of new flavours and textures, during which the participants took a picture of various spices and fruits. The girls loved making spices as well as cooking when we made coconut balls and bread and puppy seed pudding. It was a huge experience for many of them to taste and discover new flavours.
Movement therapy, moving girls, massages, walks and hydrotherapy are also a standard part of the camp’s activities. This year, a BMC (Body Mind Centring) specialist also took part in the individual therapeutic sessions. These experiences were very valuable for the girls and their families. In addition to all this, Snoezelen room and its visual, tactile and auditory stimulation were also present to the great delight of the special educators and girls.
In the camps, besides therapies, girls also had many activities and programs that were fun and exciting for them. For many of them camp is the only vacation that includes swimming. It was fantastic to see them bathing in the local fishing lake. One of the defining days of the camp was the visit to the Zoo and amusement park in Debrecen, where everyone found a pastime to their liking. Most of the girls, despite their disabilities, were able to ride a big wheel, roundabout, roller coaster and dojo so they could have a special experience. The evenings were not without programs either: there were parties celebrating birthdays, and there were evenings where the girls took part in an interactive storytelling session that was adapted to make the story easier for them to follow.
The camp was also a great experience for the helpers: they had the opportunity to experience the everyday lives of children with multiple disabilities, along with their joys and difficulties. For many of them this is the only opportunity to meet Rett individuals in person and get to know them. In some cases the mothers or parents were the helper and other family members like siblings or grandparents could also participate in the camp. This was a useful experience for special educators too: consulting with parents, talking, playing.
Although the primary goal of the camps is to provide a variety of therapeutic sessions for the Rett individuals involved, all participants — campers, parents, siblings, helpers, and other professionals — had a wealth of experiences in these few days, which are so beautifully reflected in the following short video.