One of the daily reports from Human Rights Watch really caught my eye today regarding children with special needs. I know I’ve been missing in action, primarily due to too much going on in the evenings and too many meetings during the day. On Saturday we held our annual special needs celebration to thank all of the volunteers and families that participate in our programs for children and adults with special needs. It’s a program through my church but is open to anyone in our community who has a family member with special needs; you don’t have to be a Christian or even believe in God, oh and the best part is – all of the programs are free.
When I read this article about Russia’s special needs children being dumped into state-run institutions and orphanages it made me cringe. Around 30 percent of the special needs children in Russia live in orphanages; and the vast majority of them have at least one living parent. When a child is born with special needs, in Russia, their parents are told that they will never develop, they will never have normal lives and it is best to turn them over to the state. What happens next is criminal.
Most of the children are left in cribs, sedated constantly and never given any affection or therapeutic attention. Teenage children look no larger than an eight-year-old. They receive little to no stimulation or care and are often underfed. Healthcare workers are under-trained on how to work with children with special needs and have not been educated on the basic rights of the patient. Overwhelmed by the sheer number of the children in the orphanages the caretakers rely on restraints and heavy doses of sedatives to keep any sense of order. Had these children remained with their parents and received any type of therapy they would have been far better off and for many of them they would have led fulfilling lives.
Parents who have taken their children out of these orphanages are amazed at the transformation once they are home. They begin to open up and engage with the world around them. Anyone who has ever worked with special needs kiddos knows what I’m talking about. Just because on the outside their life doesn’t look the same as mine it doesn’t mean their life is any less meaningful.
Russia needs to place more focus on providing community based programs for children and families with special needs. A major shift needs to take place in the medical community where parents are encouraged to keep their children instead of turning them over to the state to be neglected. This whole idea that because the child is not born “normal” and thus are a burden to themselves, their families and their society it outdated and completely wrong. I’ve linked to the video that HRW posted on this topic. I will warn you it is not easy to watch, but it’s important to know.
I can say with a doubt that the kids that I work with are some of the most amazing people I’ve ever met and the joy that they have brought to my life, and continue to bring, each Friday night that we meet, is beyond compare.
Do All the Good That You Can 