Often, our focus on the needs of supporting children with disabilities eclipses the need to remember the parents of those very same children. Models for parental support are many in the United States are many, but this post focuses on the implementation of that best practice at a wonderful organization in Moscow, Russia. This blog post was originally published here.
While Russia may face a stereotype that people with disabilities are stigmatized, this does not mean that there is a dearth of social change agents actively working to re-frame the status of this population in society. This morning, the second day of participation in the Eurasia Foundation’s U.S.-Russia Social Expertise Exchange, I had the great pleasure of visiting Downside Up, a Russian not-for-profit organization that “provides support and advice for families raising children with Down syndrome, develops innovative childrens’ trainings and parent support methods, disseminates knowledge and experience among Russian professionals , and works towards raising public awareness about Down syndrome with the aim of changing attitudes.” For more information on this incredible organization, click on this link. I was most moved to learn that Downside Up provides all its programmes to families free of charge – although it is clear there are many more families in rural areas that they would like to reach.
After being escorted into the Early Intervention Centre by a lovely and kind young lady named Dasha, a child with Down Syndrome, we joined in with a therapy group for young children. Seated in a circle on child-sized chairs, three therapists guided children in an educational ritual designed to help them identify their names in writing, to greet one another, to learn their numbers and to recognize activities conducted during different times of the year. At first, all of these activities seemed simple on the surface, butt but it became clear as time went on that they served a dual purpose. One of the goals of this program is to help young children with Down Syndrome develop socially, so that they may more easily fit into the school system – where they will attend without specialized instructional supports. Most of the children were engaged in the process, and smiled from ear to ear.
As the children worked on their social skills development, their mothers sat upstairs having tea and talking over the joys and challenges of parenting a child with a disability. As we walked up the stairs to meet with the mothers, I was struck not only by the works of art designed by people with Down Syndrome, but also by the photography exhibit presented there, as it celebrated fathers who chose to remain with their wives after the birth of a child with Down Syndrome. As I viewed the black and white photos of fathers lovingly holding their children, I learned that the abandonment of mothers who have children with Down Syndrome is very common.
As Downside Up’s website states “In Russia, where old prejudices and misconceptions about the nature of Down syndrome and potential of people with Down syndrome survive to this day, the families raising children with Down syndrome often encounter unfriendliness and lack of understanding…Approximately 2,500 children with Down syndrome are born in Russia every year. On the average 85% of the parents abandon their babies because of an old-fashioned, and incorrect, view that these children are unable to develop.” This was a stunning statistic that was easier to take in while in the presence of such a large group of social workers, educators and mothers devoted to the support of children with Down Syndrome in Russia. At Downside Up, I learned that in Russia, early intervention programming for children with Down Syndrome (or any disability) are only in the beginning stages. As the organization states, “there is no Federal Bill on special education in Russia. Families raising children with Down syndrome suffer from a lack of educational and social support, but most of all they suffer from society’s negative attitudes.”
The mothers support group was clearly a popular place – the women all leaned inwards toward the table and one another. They had brought cookies and cakes to go along with their tea. This was clearly an important part of the lives of these mothers, a place to receive support and guidance with other mothers who understood the challenges they might face. This group reminded me of the Parent 2 Parent model of support for families with children with disabilities in the United States, and I was glad to see this model in place in Russia. This is a low-cost intervention that means a lot to its participants.
As I joined in the tea-drinking with this group of incredible mothers, they had many questions for me about what life was like for children and adults with disabilities in the U.S. I talked about my own experience with my sister with a disability and this created a good connection between us. I told the group that many of the services we have in place for children with disabilities today are present due to the hard won efforts of mothers who banded together to demand assistance and support from the government. I was happy to learn that this type of effort has recently started in Russia as well. My time with the mothers was poignant, and warm feelings were exchanged.
As our visit came to a close, we had a chance to meet with the organization’s director, Irina Menshenina who spelled out her goals for the future. Specifically, Downside Up is working towards developing employment model programs for young adults and adults with Down Syndrome, and will be visiting the U.S. to look at various models in the near future.
Clearly, this organization is working hard to re-frame disability, and doing a great job at it!