Serafim's mother's story

Serafim was born on 20 June 1994 and diagnosed with Down’s Syndrome. It was Whit Monday, the day after Holy Trinity Day. I was 45 and the pregnancy was unexpected and detected at a late stage. During the whole pregnancy I was haunted by fears for the baby’s health, although I had never heard of Down’s Syndrome at that point. An experienced ultrasound specialist counted the foetus’s fingers and toes, examined the baby’s ears and at 6½ months noticed foetal hypotrophy. I spent 2½ months lying down, due to the constant risk of miscarriage.

At term a Caesarian section was carried out (breaking the baby’s collarbone). Serafim was put in an incubator (he was very small and weak), away from other children. The paediatrician spoke to me as if I had given birth to a monster. The following day Serafim was taken to the Filatovsky Hospital for a choromotype evaluation. Terror, confusion, the end of life – that’s what I felt when I left the maternity hospital through an emergency exit. For ten whole days the doctors tried to persuade me to abandon the baby. When they delivered the choromotype analysis to my husband, they told him: “It would be better for you to get a puppy or a kitten”.

My proud, defiant husband took the blow badly, and I think he has never been able to accept it. My older son was 19 at the time, and the doctors repeated over and over that he would be doomed to solitude, that he would not be able to build a personal life, and that Serafim would be an eternal “blot” on his fate. We could only tell our nearest friends and family about Serafim’s birth. At that time my parents were nearly 80 years old and lived in their own house in Lianozovo. We moved in with them.

Serafim’s birth completely changed the lives of the whole family as everything revolved around the new baby, and nothing was simple: he didn’t eat, he didn’t drink, he didn’t sleep. Moreover, he very rapidly developed a heart defect (constriction of the pulmonary arteries, second-degree circulatory abnormalities – blue lips and heavy respiration). His heart hammered so loudly that you could it hear it from the other end of the room.

By this time the Moscow Down’s Syndrome Association headed by Sergei Koloskov was already in existence. After meeting with Sergei’s family, life became easier – his four-year-old daughter Vera jumped, laughed, did somersaults and spoke a few words.
From the age of four months we were ready for the heart operation, but the Bakulev Hospital cardiovascular surgery department told us: “We’ve never handled such a combination of abnormalities.” In 1996, with the help of the Down’s Syndrome Association, and especially Sergei Koloskov, Serafim was operated on in Bologna, Italy, where the surgeons told us that heart conditions such as Serafim’s are fairly common and are operated on immediately after birth. In Bologna, all costs of surgery are paid by the parents of the Down’s Syndrome child. In Italy there is no charity. Our stay in Italy changed our view of the world: communication with the Italians, getting to know families with Down’s Syndrome children, their attention and care gave us back some happiness (for a while).

At the age of three, Serafim began to go to the Institute of Corrective Pedagogy, and at four he began to go to nursery. He was an uncontrolled and hyperactive child, often running away from the house (fortunately we lived in village), so we always had to keep him in sight. While my parents were still alive, I had the strength to deal with him. The main game I played with him was ‘daughters and mothers go to the shop and the nursery’ and similar. This was a reliable tactic – for three or four days afterwards, Serafim would play by himself, repeating the elements of my game. However, with the death of my parents life changed and I had to cope with property issues, legal actions, appeals and large financial costs. There was no strength left to care for Serafim. During these years we hired a girl from the countryside whom we hardly knew, to stay with Serafim and look after the house.

Serafim spoke his first recognisable words at the age of one – “Mummy, over there”. He had a wide range of gestures, which he made up himself, however his vocabulary grew at the rate of two or three words per year. The speech therapists at the Institute and nursery told us that he had an abnormally highly-arched palate and very thick, short hypoglossal ligaments, which would have to be stretched. From seven to ten years old, the speech therapist did massages of the oral cavity and tongue three times a week. She also insisted on an operation on the hypoglossal ligaments. After 2½ years of continuous massage Seraphim could still not speak apart from sudden, unrecognizable words. At seven he was sent to school, where the teaching commission judged him to be unteachable

The Circle

At the age of seven we went to The Circle. We found out about it from Professor AM Shcherbakova, who taught a course for parents Serafim’s nursery. We attended the youngest class once a week: Serafim was very slight, as he was not growing. At the age of three we had visited an endocrinologist. Serafim ran riot all over his office and the doctor, looking at the results, had said “Let’s try him on L-tyrosine, but I think it’ll make him even more active.” She didn’t show me the results. We gave him the medicine for about 2 months, but apart from hyperactivity we never noticed any change. But ten years later, at The Circle’s summer camp, I suddenly noticed that Serafim’s head was almost bald. Apparently, all these years he had been suffering from severe hypothyroidism: he hardly slept, his sleep was like a shallow semi-consciousness (he never sleeps deeply, even now). As soon as the hypothyroidism treatment started, when he was twelve, my little boy started to grow and sleep peacefully.

Serafim and his mother

For two years we attended the youngest class at The Circle once a week. In summer we went to the rehabilitation camp and it was fantastic: set timetables, a variety of activities, the Hearth programme, folk dancing, shows, lectures for the parents – everything to inspire new hope that our Sima could do something and live as part of a community.

The Circle’s summer camps deserve special mention. Serafim went 6 times. Children, teachers and parents were together and busy all day long. Everyone worked hard, and in the evening, you have an amazing feeling of achievement from a fully-occupied day, you feel that the child has learned, seen, tried and conquered something new. The camps are always small – they should be longer and larger. I especially liked the camps where Sima performed in the shows. At the very first camp he played a spider in a show about a fly, based on a children’s story. The shows always took place in the fairytale forest with birds singing and a gentle magic breeze. He was fully involved in the role, felt the pace, and in my opinion, was a credit to the show.

In the third year of lessons at The Circle Serafim was taken into a junior theatre and we spent four years there. At this time Serafim’s speech steadily improved: he began to use sentences, at first with two words, and the following year with three or four. Overall the lessons at the junior theatre were a SIGNIFICANT period of our life. Serafim couldn’t imagine himself outside The Circle, and he looked forward to meeting the children and teachers, and he learned to obey the rules (this was the most difficult thing for him – he is a real hellraiser). Once he saw another, parallel, group – children baking pies, clapping, stamping their feet, chanting rhymes together. He wanted to join in so badly that he sat by the door and cried.

The following year Seraphim was taken into the Stay for a Day programme. We were going to The Circle twice a week – to the junior theatre and Stay for a Day. At Stay for a Day, apart from games, snacks and lunch, there were woodwork and puppet workshops. In the puppet workshop Serafim worked with some little girls and got in their way. Then when we got home, he shut himself in his room and spent a long time making ‘puppets’ out of rags (he kept saying that he was at a lesson).

The following year Seraphim was enrolled in the senior theatre, which was a great honour for us. The group is united, disciplined, older than Serafim (the children are already past the transitional stage, where Serafim is now), and at present the disciplinary requirements of its programme (especially during the warm-up) are very difficult for Serafim, but I think that in time he will master them. This year Sima is also going to The Circle’s Special School, and sometimes they even take him for a walk.

Overall, in eight years of classes at The Circle, Serafim has participated in various programmes, each presenting him with a lot of new demands, some of which he dealt with well, some less so. Take the pottery class as an example: for several years all he could do was eat the clay and get covered in it, but this year he is making things, he enjoys it, and it seems that he is doing rather well. Now, looking back, I am amazed at how much Serafim has developed: he no longer wets the bed at night, he sits quietly on the metro while I read a book, while even a couple of years ago he used to jump out of the carriage at every station, he has stopped disappearing on his bike without asking, he has become much more manageable. Last year he started to go to the remedial school. Serafim’s character is hellraising. To sit and do lessons is impossible: first he has to tear his and my nerves to pieces; but then, even if I don’t insist, he sits down and gets on with them. He much prefers to do lessons by himself: he sits for a long time, copies out examples, scribbles in a nearly-straight line, but so far he hasn’t managed to write.

On Sundays he enjoys going to church – this has also developed over the years. Sima likes to play by himself at ‘documents’, i.e. to put pictures and written papers into files (I think this is a result of the legal cases, when I was continually tidying up documents), and he even cleans up his room; admittedly he has to be in the right mood and then he presents it as a surprise, often moving his belongings, books and even furniture to new places. He does it with artistic taste, though in truth it’s impossible to find anything afterwards.

At home we have always had pets: a dog, Fafa, of Serafim’s age (she died in spring) and a cat, Murka. His relationship with the animals is ambiguous: he can stroke the cat or dog for ages, whispering secrets to them, and also pitilessly chase them around the whole house, fortunately they have somewhere to hide. That said, the animals love him very much.

Eight years of attending The Circle have changed Seraphim and made his life more varied. Each year the child enlarges his circle at The Circle, and each year his circle of friends becomes more intricate. He is acquiring craft skills, new interests, new friends. In short, the alternation of lessons and games, in a comfortable time period and under the supervision of experienced teachers, with the attraction of theatre, make the lives of children with limited possibilities harmonious and varied, allowing them to forget about their dependence on their parents.

The Circle becomes a second home for them.