"Light Of Life" (LOL) Blind Children's Center serves children from birth to school-age who are blind or severely visually impaired and their parents. The center-based and home-based activities and Center's publications help the parents learn methods and techniques of raising their visually impaired kids and the children acquire necessary skills and build their independence. The Center utilizes its expertise and experience to serve families in the countries of former USSR.
"Light Of Life" Blind Children's Center was founded in November 2000 in Kiev, Ukraine, by the parents of blind child, to serve children from birth to school-age who are blind or severely visually impaired, and their parents by
- providing the special training programs for children from birth to 6 years old,
- publishing a variety of materials on different aspects of raising blind children,
- organizing parent support groups
in an environment where literally no special assistance is available for them and a society which seems to be unable to help them with their problems.
The goal of LOL Blind Children's Center is to radically change the present situation regarding the small children with severe visual impairments in the countries of former USSR. First and foremost the activities of the Center are focused on breaking the existing stereotypes.
All the services and materials the Center offers to children and their families are free of charge. The LOL Blind Children's Center is funded entirely by private philanthropic support. It receives no financial support from state or local governments. 100 percent of the funds supporting Center's activities to date come from the churches and concerned individuals.
The LOL Blind Children's Center is a part of "Light Of Life" (LOL), a Ukrainian charitable organization dedicated to serve people in Ukraine and other countries of the former USSR through the social and publishing projects in which it is currently involved.
Facing The Realities
Blind Children In Ukraine And The Countries Of Former USSR
Statistics show that in Ukraine by year 2004 there were about 67,000 people who are legally blind (UkrStat/Ukrianian Society Of Blind data). The number of blind children from birth to 6 years of age among them is about 1,000 (estimates based on European Blind Union and Lighthouse International data). Totally in the countries of former USSR today there are about 4-5 thousands of such children.
More detailed calculations of the number of children with visual impairments in Ukraine are very contradictory. There is no nationwide registration of these children. The ophthalmologists in district and regional children clinics do not have records of such children. Often they do not know all blind children in their district because many of these children simply do not need an ophthalmologist.
Amazingly, there is still no institution/organization in Ukraine other than the LOL Center dealing with children with severe visual disabilities under the age of 7. There are few kindergartens, located mostly in Kyiv and big cities, which work with visually impaired children. There are several boarding schools for the blind located around the country.
The National Ministry For Public Education offers only rehabilitation programs for the parents of blind kids. Parents visiting the LOL Center have shared with us what kind of assistance they received. One mom from Smela (a small town not far from Kiev) says that in the course of the "rehabilitation" program the psychologist absolutely seriously suggested that she should... abandon her blind child in order to preserve the family. "Sooner or later this man will abandon you," said the professional psychologist sitting in front of her astonished husband.-"You should send your child to the orphanage before it is too late... It will be good for your child, too. The food is very good there..." Similar "counseling" was recently given to another mother at one of the national rehabilitation centers in Kiev.
Many stories like this could be reported, but the general idea is clear: In Ukraine today there is absolutely nothing available for development and education of young blind children. Moreover, after our almost 5 years of working with blind children, we realize that many of them have developed neurological and psychological problems by the age of 5, none of which were caused directly by their blindness, but rather by the social environment they live in because of their blindness.
Ukraine inherited from the Soviet regime an attitude towards the blind as mentally retarded semi-humans. They used to live in small ghettos in big cities and work at special factories doing primitive operations like assembling electric wall outlets and switches. Those very few exceptions when blind people became teachers, lawyers, and scientists just proved the general rule: Most could not fit into society.
This established a public opinion about blind people, which is now a factor of tremendous extra pressure on parents who just found out that their child is blind... No wonder the family often could not survive the shock and suffered many sad consequences. Statistics show that in about 70 percent of such families the husband either starts drinking or abandons the family within the first six months. In both cases the social status of such a family quickly falls below the poverty level and the parents become unable to raise their blind child adequately. For these and other reasons, they try to hide their blind child from people's eyes, and sometimes sending the child to their relatives in rural areas.
In starting the LOL Center, we realized that first and foremost our work should be focused on breaking the existing stereotypes.
The LOL Center starts
It is always difficult to call the appearance of a blind child in a family God's blessing. But within five short years Alex and Oksana Yefetov, the founders of "Light Of Life" Blind Children's Center, have seen how, through their young son Pasha (who due to disease lost his sight short after his birth and underwent two very complicated surgeries in the US), the Lord is accomplishing His own plan. Today the ministry, which has grown out of one family's personal problems, embraces many families. The activities of the Blind Children's Center are really able to help children with visual disabilities and (which is even more important) give hope to the parents (see testimonials). After facing the sad realities of raising a blind child in post-USSR countries, parents often consider their situation as a lifetime tragedy, everlasting curse, and an end of times. What a blessing is to see how the light of life and the joy of parenthood return to them, how they break through severe depression and restore their abilities to be happy again, to enjoy their family relations, and to be proud of their child's successes! All this brings real joy to the hearts of Center's staff. Although the LOL Center was officially registered in September 2001, the actual work began in Fall of 2000. While in the US, Yefetovs were able to meet various vision specialists, parents of blind children, and people from the National Federation For The Blind (NFB). They helped tremendously in collecting various useful information and materials on different aspects of raising blind children. Alex and Oksana saw how valuable this information was for them as parents of a blind child and how unique it is for their country. The strategic directions of LOL Center's activities were set as follows:
- Creating a database of the blind children throughout Ukraine Ч finding their names, addresses, ages, diagnoses, social situation in their families, special needs, etc.
- Translating, adopting to the cultural realities of the CIS countries and publishing various materials that can help parents of visually impaired children.
- Developing and providing the special training programs for blind children of ages 0-6 and teaching parents the special techniques they need in raising blind children.
- Organizing regular meetings of parents of blind children for idea/experience exchange and training.
- Developing working relations with different institutions working with blind children.
- Promoting the information about the LOL Center and its activities through various channels, including a community type web site of the project.
Initially the LOL Center's team consisted only of the founders, Oksana and Alex Yefetov. In winter 2001 it grew by half when Svyeta Vanyuk joined us. Today she is working full time as a preschool teacher and mobility specialist making great progress in adopting the known techniques and developing original ones for working with blind children. Besides these three, today's LOL team includes a translator, a designer and an accounting person Ч all work on a contract basis. Other than Alex and Oksana, there are no volunteers. As it was from the very beginning, the LOL Center is headquartered in the Yefetov's apartment.
Consultants and Advisors
The LOL Center currently works with the following specialists and institutions around Ukraine:
- Elena Lepekhova, Prof., MD, Chief Pediatric Ophthalmologist of Kyiv city and region
- Tatyana Orlova, MD, Head of the Prenatal Pediatrics Department of "Okhmatdet" hospital
- National Institute For Eye Microsurgery
- "Okhmatdet" Central National Children's Hospital
- Ukrainian Association of Blind Lawyers
Promotion of Services
The Yefetov's son Pasha (age near 6, with retinal detachment in both eyes due to ROP stage V disease) has become the most convincing promotional tool of the LOL Center. Because all the new training programs and techniques the Center developed were adapted and tested on him first, today Pasha is a walking result of the approach and methods promoted by our Center, combined with parent's love and care. Pasha indeed is very different from the common image of a blind child in Ukraine. In many aspects Pasha is much better developed than his sighted friends of the same age. He lives the life of a happy young boy and has many friends. When we start working with a new family, first of all we try to invite them to visit our office and see Pasha. Often this has a tremendous hope-giving and "eye-opening" effect on parents. They start to realize that nothing fatal has happened in their lives, and the joy of parenthood can still be a reality for them, too.
Of course, Pasha is not the only way of making our work known. The LOL Center has good connections with many institutions around the country that deal with blind children Ч children's hospitals, schools for the blind, public organizations of people with disabilities, Christian organizations, and churches. A booklet describing LOL activities was published and distributed among district children's clinics and children's ophthalmologists in big cities around Ukraine. A full-page advertisement of LOL appeared in each issue of "Christianity" Ч a nondenominational Christian magazine with a run of 10,000 copies distributed around Ukraine as well as in other countries of the former USSR. The LOL staff participates in various exhibitions, conferences, seminars, and public events on topics related to our interests.
The five years of LOL Center's operations brought a much deeper understanding of the situation with blind children in Ukraine and countries of former USSR. Today we realize that there are several issues that should be taken into account when we look toward the future of this ministry:
- The most striking lesson we learned: Parents are generally not very enthusiastic about being involved in LOL activities. The initial thrill Alex and Oksana felt when they started the LOL Center Ч sharing with parents the "good news" about ways of raising their blind children, making disciples among parents, and spreading through them the "good news" to the further regions of Ukraine Ч soon cooled down. Facing the realities described above (Chapter 3), we realized that some parents of blind children have a growing temptation in their hearts to just cross this child out of their lives and to get rid of this burden. They are often skeptical about what they hear at the LOL Center, simply because it is a convincing argument against such plans. Many parents of blind children live with a more or less hidden feeling that society and the people around them owe something to them because they are less fortunate than others. This idea, being fairly common in a society where everyone tries to get to the state of maximum personal comfort, makes them gladly accept LOL services with minimum participation and no feedback. This state of mind requires some time for recovery.
- The Center cannot become self-supportive in the near future. Due to the social realities described above, parents whose children get help from the Center cannot provide adequate financial support of its' activities.
- The staff of LOL specialists (as well as regional representatives) cannot be formed from mothers of blind children who have acquired some of the necessary skills and want to help others the way they were helped. Therefore, we plan to attract students of pedagogical colleges and universities, preschool teachers, or Christians who want to become the part of this ministry.
Remembering that our primary goal is the future of blind children, we keep this in mind and continue our work.
Download the 2001-2004 Progress Report (PDF, 250kB)
Parents Speak (Testimonials)
We asked some of the parents we work with to share what they think about the work of the LOL Center: how it helps them in raising their children and how their lives changed after they started working with the LOL Center. Here is what they say:
Communication with people who faced exactly the same problems as I did gave me so much assurance that everything could be changed for the better, and that there is no need to despair. LOL helped our children learn a lot about the world around them... Ч Tanya Pavlichenko, the mom of blind twins (3)
The LOL Center helped me to realize that my child has every opportunity to have an abundant and happy life. I learned peculiarities of the development and perception of the world my child has. I learned how to be filled with joy and happiness from communications with him. The LOL Center helps my child to fully adapt to life, to learn how to fully use his abilities. He enjoys studying and getting new skills. I am so happy that there is such an organization. Ч Natasha Yankovskaya, mom of a blind boy (1.5)
I am so grateful to people working at the LOL Center for their tremendous support. Before getting to know them we were "isolated" from society. We could not find the answers to the tough questions like: What do we do with our child? How do we raise her? The real help in raising and development of our child we got only after we came to the LOL Center. The knowledge we receive is also very important as it gives a real hope for the future and answers many questions. Meetings with parents of similar children, exchange of experiences, discussion of the problems, and mutually finding the right solutions became possible only at the LOL Center. After they started working with my daughter, she became more quiet, attentive, sociable. I see her really developing Ч and this brings real joy... Ч Svetlana Vovk, mom of a blind girl (5)
The literature the LOL Center gives us is read by the whole family Ч Thank you! We are now optimistic, we are learning how to raise our child, and we no longer see our situation as a tragedy. Ч Olya Kalyuk, mom of a blind daughter (3)