Tuesday, August 11, 2009

Welcome to the Site!

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!

Stay tuned....


  1. I sit here at 1 am, with tears of relief and joy streaming down my face. My son is 5 years old & entering kindergarten next year. His pre-K teacher suggested we have him tested for autism. In my heart, I know my son does not exhibit any of the autistic traits aside from his hand-flapping. Your blog and the information from Johns Hopkins has confirmed my belief. I cannot thank you enough for sharing your story and spreading the word. Bless you all. -Proud Mommy of a wonderfully brilliant hand flapper

  2. So glad you started this site!! The lack of info out there amazes me. My daughter also has this as well. When she began to exhibit this as a baby, I knew she had inherited it from me. Of course, I never was diagnosed and my family didn't understand it. However, they did know it was best not to make a big deal out of it, thank goodness. Other than the stereotypies, I was a normal functioning child. I did well in school and had normal friendships. I just liked to flap and shake when excited, when I played and when I was engrossed in a book. Please know, that as your child grows, they will be able to channel this into a socially appropriate behavior. I personally feel that this is a gift. As an adult, I can still feel that excitement when I am focused on something. I just don't shake and hand flap anymore. I may fiddle with a pen or bounce my leg instead. It has turned me into a highly productive, focused adult. It breaks my heart that some of these children are misdiagnosed and parents are so stressed.

  3. I first located your video on Youtube. My baby started to demonstrate stereotypies at about 6 months also. What I found most alarming was the facial grimacing and blinking. It always seems to happen when he is tired and perhaps teething. Although they went away for several months, they are now back. He is almost 16-months old and is advanced in many areas. He has been walking since 11-months, running since 12-months. He is very social and has said at least 23 different words and responds to commands very well (close the door, honk the horn, hand that to me, etc.). Your website is very reassuring, but I am still very concerned.

    I am hoping that he will be like many of your subscribers who are bright and have learned to redirect their behaviors. The only thing that I care about is that he grows up to be happy and able to accomplish anything he sets his mind on.