Downside Up is Upside Down for Russia: A Chance for Children with Down Syndrome
By Andrew Freeway (Andrew_Freeway@yahoo.com)
It was everyday practice in Russia for parents to give up a child with a disability like Down's syndrome. Even today this happens regularly. Moscow's Downside Up is one of the organizations showing parents, doctors and educators that these children have a right to obtain access to the healthcare system or to educational services... that no one can deny these children access to everyday society.
Immediately after birth Anastasia Daoemnis' baby was taken away for an examination. For almost an hour she did not have a clue if she had given birth to a boy or a girl; she was only told that the child had a 'genetic problem'. Subsequently the hospital advised Anastasia to give up her baby girl Dasja: she was diagnosed with Down syndrome. "She will never recognize her parents and will probably die within a couple of months", said the obstetrician. Feeling pressured like this, Anastasia agreed to let Dasja go to a children's home. After 4 months she saw her baby again. "It was horrible to see her lying there in a glass box just recovering from some sort of illness and not even wearing a diaper", says Anastasia. She decided to visit her daughter more often. In contradiction to what she was told by the hospital staff, Dasja was growing up as a lovely baby making contact with her attendants. Almost 1.5 years after her birth Dasja went on holiday with her - by then divorced - mother, never to return to the children's home. Anastasia did not want to give Dasja up again and took her home.
In Russia it is no exception that obstetricians and other health care workers advise parents to give their children up if they are born with a disability. About 9 out of 10 children with Down syndrome are placed under care directly after birth. In spite of a lot more media attention and information, this inheritance of the Soviet period is still very much alive.
Nastja Mjagkova was also pressured to give up on her son Pasja. Still overwhelmed by emotion she talks about that period: "I became depressed, my soul withered". Only after 2 years her husband agreed to have Pasja back home permanently.
Visiting the center
Dasja, a cheerful blond toddler of 3 wearing a bright yellow suit, and the little 2 year old Pasja and their mothers are visiting the Downside Up center today, a center specialized in the support of children with Down syndrome and their parents. While Polina Zjijanova, Downside Up's teacher, is playing a record the children are dancing to the music. Pasja shakes his two tambourines; the mothers laugh about the serious expression on his face. It was the staff of the children's home that informed the mothers about the existence of an organization like Downside Up.
Improving and extending the knowledge about Down syndrome is the most important target of Downside Up. They have just started a project in one of Moscow's maternity clinics, offering seminars for the staff. Although it is for the first time that Downside Up has succeeded in fighting its way into the medical bastion, their seminars attracted a lot of attention and enthusiasm among the workers in the clinic. The project will be extended to other maternity clinics. "Our message is completely opposite to the message given out by doctors and other healthcare workers," says Downside Up co-worker Alla Kirtoki. "We show them the abilities of these children instead of only focusing on their probable disabilities. In the maternity clinics parents are told that their child would never be able to walk or talk, that the child would become aggressive and that it would not recognize its mother or father. The healthcare workers did not do that because they wanted to harm the parents or the children, but because they did not know any better. They were not bad, just ignorant!"
Support from the Netherlands
In the Downside Up center about 140 children with Down syndrome and their parents are offered educational and developmental support by a team of specialists. A brand new method of physiotherapy will soon be introduced with support of 's Heeren Loo based in Ermelo, the Netherlands.
The center's aim is the integration of disabled children in everyday society, a society that has denied access to these children for a very long time. With the special educational support of the Downside Up center most children are attending regular toddler schools; sometimes non-disabled children are visiting the center to get acquainted with the other kids. Medical staff and students are offered seminars to show them that children with Down - in the words of Kirtoki - "might have problems but they are not a problem".
Zjijanova's lesson has ended and the mothers try to lure their children away from the many toys. In the hobby room the mothers are feeding their children lunch. In between this room is also used as a staff room where the staff, sitting on the small children seats, have their daily meetings. "The support and attention we get here is very important", says Nastja. "I wish I had known this earlier. It just is not true what the doctors said, that we were going to be very unhappy with our Pasja!"
Parental peer groups
The next step might be the development of a parents-supporting-parents group. Downside Up is thinking of facilitating the creation of a self-help or peer group among the parents of the children that are now attended by the center.
-Andrew Freeway (with thanks to Wendelmoed Boersema)
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