Sunday, October 21, 2012

Home visit in Moscow (JFS)

Home visit to Yulia

Yulia lives with her mother, Svetlana. Her parents divorced many years ago and her father has a second family.

Yulia has Downs Syndrome ... but Svetlana refuses to acknowledge the diagnosis because she’s afraid of the consequences. Instead, JFS and Svetlana refer to Yulia’s condition as "an undiagnosed genetic developmental disability." Due to Svetlana’s fear of stigmatizing her daughter, Svetlana hasn’t applied for government assistance and Yulia isn’t classified as an invalid. Svetlana is a cancer survivor, received disability during treatment and recovery.

Svetlana and Yulia live in a 3-room apartment. Yulia’s adult brother, his wife, and their baby, also live in the apartment.

Svetlana is an English teacher at Moscow School 57 and receives a monthly income of approx $800. Yulia’s father occasionally contributes to the family. Because Yulia doesn’t have an official diagnosis, she doesn’t receive disability payments from the state.

Jewish Family Service assistance:
Yulia attends a local school for children with special needs – the Kovcheg school. The JDC-JAFI Integration Program provides services at this school for Jewish children who can’t keep up in regular schools. It's a great cooperation. The Integration Program provides Jewish curriculum, including Hebrew, Jewish cultural and historical classes, and after-school activities. JFS, through the Children’s Home Care Program, which is outside of the Integration Program, provides a classroom aide for Yulia (a requirement of the school). As a result of this help, Yulia has made significant progress. She's moved into the core curriculum at her school and is able to meet its requirements. Through these supportive programs, Yulia developed an interest in photography and is better able to interact with other students and teachers.
Yulia has been a participant in the Integration program since its beginning (2007). Along with her mother, Yulia participates in the Integration Program Summer Camp every year.
Last year, JDC’s Children’s SOS program paid $1400 to repair a special computer that Yulia uses.
She receives: tutor, Jewish content, food assistance, SOS assistance.

We take off our shoes. It’s a nice warm apartment.
They have a cat and a (big) dog called Kara. It’s a good neighborhood. If Svetlana would accept and acknowledge Yulia’s situation, they'd receive several hundred extra dollars a month as a disability payment … so why not? (That’s the question you have in your head as you walk in).

When the JDC local staff start to explain, they frame it in terms that in the West we’d understand: we try to explain the importance of the disability payment, but Svetlana keeps finding excuses not to send Yulia for diagnosis. She's scared. She doesn’t have time.

The program aims to give conditions for SN kids to grow. So this is a 16 year old girl and how could she be helped if she gets the diagnosis? A diagnosis of disability is a life sentence – you won’t get to university, you won’t succeed in life.


German is the older brother. He got married this year and they have a baby boy.

Svetlana shows us the school journal, it’s Yulia’s progress report from her teachers. Svetlana’s very proud of Yulia’s high scores. She got a “satisfactory” in geometry, and “good” in math. It’s quite impressive. She's really succeeding. She got 5/5 in algebra.
5/5 in English
5/5 in literature

At the beginning she would sit alone with her tutor and not communicate. But she wanted to prove she could succeed.
She has vision problems, they diagnosed some muscle weakness in her eyes last month. There's a problem with how her brain interprets the signals from the eyes. The magnifying glass helps her focus on what she's reading.

(Yulia is very shy – she won’t come sit with us, we go to her room after a while to say hello and I give her a Snow White book in Russian as a gift).
Two years ago we started medical treatment and tests. She was writing only in block letters, not fluent. We didn’t even know if she was left-handed or right-handed. She used both hands incorrectly.
Right now she just finished her first ever essay, a short piece about Gogol’s work.

Svetlana is an English teacher (she has a lovely almost-British accent).
Yulia was in an integrated kindergarten at age 4, but then her condition deteriorated, there were no integrated schools for SN kids. SN schools wouldn’t have helped her, and regular schools would have been worse. We sent her to an inclusive primary school, German was a student there. They have 1 SN kid for every 9 regular kids. He’s now 28. This was the Kovcheg school (it’s now an integrated school).
In 2004 I had cancer surgery, I couldn’t make do on my own. Her father is a specialist, actually on SN, but we got divorced that same year. It was a tough year. We didn’t even have a school for her that year, we were looking for something.
[their cat is playing with Yulia; they have a lot of books in the apartment, 3 bedrooms, it’s clean but a little messy and disorganized, dark]
I was working in a private school as a teacher, we lost a year, but I sent her to a regular school with private tutors. I wanted her to get stimuli in school environment.

Now … oy, such difficulties I have (smiling) … I have to learn algebra to keep up with her! I forgot everything!
They asked us to leave the school but the program found us! Since kindergarten we’ve been using CCD experts, they knew we didn’t have a recognized disability because there's no formal diagnosis. We want the diagnosis but the certification will prevent Yulia from ever becoming ‘normal’ in society, going to university etc. CCD said she probably has light Downs Syndrome. We didn’t know about her birth-trauma. They didn’t tell me at the hospital when she was born about the birth trauma – they wanted me to leave her there, they gave me anesthetic that kept me asleep for five days.
CCD made the referral, first we went to the summer camp, five years ago, integrative, in Zvinigorod. It was amazing. Svetlana and Yulia went, with the tutor, a week long camp with special groups, madrichim, some kids with parents and some without.
We have lots of contact with the program. She's at School #57, lots of Jewish kids. It’s the second best school in Moscow for math. Traditionally it was 90% Jewish.
Yulia doesn’t know her parents are divorced. They won’t tell her, it would be too difficult. He comes to visit every Sunday, she adores him and he adores her. We haven’t lost contact.
The tutors come from Hesed and JDC; social worker comes from JDC.

Yulia is in her room, she tells us about Roger Rabbit, shows us her artwork (it’s very good).
Svetlana says we owe everything to this program. It’s opened up a world of possibilities.

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