Meeting with parents of children with Down syndrome

Tonya Luna, HWS '97 & Geneva City School District, Geneva, NY

     Jenna Keeton and I recently had the opportunity to meet with some parents and children with Down syndrome here in Barnaul. I myself have a son with Down syndrome and it is a strong interest of mine. During many of our previous visits to schools in Barnaul we would ask about the education of children with disabilities. The answer we received is that they have special schools and we got the feeling that inclusion was not yet acceptable, which is why we wanted to hear first hand from families.  The four mothers that came are pioneers in this region and country. They are the first to advocate for inclusion, although with limited success.  They are out there trying to change public perceptions of people with Down syndrome and show their capabilities. They do admit that they are still the minority, and many parents still give their babies with Down syndrome up at birth.
     As we entered the room, we were greeted with the biggest smiles from 6 year old Varrya and 15 year old Arman. Varya then proceeded to say hi and use other English words. Her mother, Marina, says that she has been learning English from Canadian websites. Wow! As we talked, she shared that Varya attended a regular preschool but she does not want to send her on to the first class in a public school because she would be with 30 students and they do not have student helpers or specialized teachers.
     As we began talking, the parents fired questions at us about education, inclusion, sports, and benefits for children with Down syndrome in the NY. They seemed intrigued with many of our answers and we could sense just how different it is in Russia. They are part of a group that translates as  Sunny Kids that are working to change public perceptions of Down syndrome.  Check out their website, www.sunkrug.su
     As it was nearing time to leave, you could sense that we all still had more questions for each other, so by exchanging contact information and with hugs and "I Love You" from Varya we reluctantly parted.  I am so fortunate to have met these wonderful mothers and I applaud their efforts to make a difference for their children.