If you have stumbled onto this site, chances are you have or know a child that deals with motor stereotypies. First and foremost let me say that I am not a medical professional nor do I claim to be. I am a mother of a now 6 year old daughter who has been exhibiting stereotypies since around 6 months old. I wanted to start this blog after my own frustration in finding practical information for parents and caregivers about stereotypies and how to deal with them.
For the longest time, we were not at all concerned about my daughter's stereotypy, as she was a normally developing child with only a few colds in her health history. As she got older, the stereotypy became more advanced, and by the spring before she was to start kindergarten my husband and I decided it was something we'd like to follow up on so we could better explain the behavior to her teachers. Her pediatrician reviewed the video we'd taken and said it looked like a fairly complex movement disorder and referred us to a pediatric neurologist at Washington University School of Medicine in St. Louis. I was told that Dr. would like to see video footage of my daughter when she was having the movements, so I uploaded the video to YouTube and sent it on over. Dr.discussed our daughter's stereotypy with us and explained that many of his patient's stereotypies become extinct or greatly diminished over time. He assured us it was nothing to be concerned about as long as it was not negatively effecting her life or impairing her functioning. We were relieved, and when time for school came we were able to discuss her situation with her teacher intelligently.
At our appointment, Dr.was pleased with the video transfer and the use of current technology, so we decided to keep the video posted on YouTube for other folks researching the disorder to have access to it. Since I posted it last spring, I've received many messages asking about our experiences from parents who are just like us...confused and scared about what their child is going through and wanting to do anything in their power to make it better. I've received messages as far away as Jordan from people just seeking information. This is my attempt to help gather that info and provide a place for parents to share experiences and perhaps seek advice. There seems to be quite a bit of research dedicated to understanding stereotypies in normally developing children, but there isn't (from what I have gathered) a place to go and find out how to deal with stereotypies on a daily basis. Hopefully, this will be the start!