Stephanie Wang – is mother to Jaran who has autism and recently decided to start a campaign in order to educate people about invisible disabilities. She has set up a Facebook page, Protectors not Bullies which state, ‘We pledge to educate our children on the disabilities that we can’t “see” so they know how to deal with awkward, quirky or not typical behavior.’
What Stephanie ultimately aims to do is to encourage children to become protectors of other children who have differences and not bullies.
Stephanie first came to my attention via an emotional video that she posted on YouTube, in which she urges parents to educate their children about autism and all the other disabilities that cannot be seen. The full video can be viewed below.
As a mother to an autistic child I found the video incredibly poignant and thought provoking and after initially wanting to thank this mother, for posting the video in such a personal and raw way, I then decided that I needed to know more about the reasons for posting the video. So I contacted Stephanie and she kindly agreed to an interview.
When was Jaran diagnosed with autism? What were the early years like?
Before Jaran was born, my husband’s twin sister’s son was diagnosed with autism. I was familiar with the signs of autism and knew what to look for. Not knowing how much was genetic; I kept an eye on Jaran, looking to see if there were any signs. Jaran was different though. He would have eye contact with us, play peek a boo with us and he pointed to objects in books. However, there were other odd things. He did like to line up his cars and he would make strange vocalizations. I brought up my concerns with the doctor and she didn’t think it was autism. At about 14 months (a month after his MMR shot), we were visiting family. Three nights in a row we would put him down to sleep and half an hour later he would start crying. Each time he had thrown up in his bed. During the day he was fine, but he threw up over the 3 nights. We took him to the doctor and they said he was fine. But he wasn’t fine. After that he stopped trying new foods, he became more withdrawn. His eating habits concerned me because he wasn’t able to chew well and he would over stuff his mouth to the point that he looked like a chipmunk. A friend suggested the Regional Center as they were able to help her daughter with feeding issues. So we called and they asked a ton of questions and the questions related to autism. At that point I knew something was not right and I began to accept it. Just before his 2nd birthday he was diagnosed with high functioning autism. I remember crying, not because of the diagnoses, but because I knew he would have a hard life, especially middle school. I am now living that fear with him and it breaks my heart.
What is life with Jaran like now?
Jaran is currently in 6th grade in a small public charter school without an aide. The school has been wonderful for him! He is smart, funny and a good kid. He loves technology! If he could be on some form of technology all day he would. He especially loves Skylanders and Plants vs. Zombies. He has always loved Legos and says that when he gets older he is going to be a Lego designer. I wouldn’t be surprised because he can take apart an already built Lego set and put it back together without the instructions. He tends to be a drama king and loves to be funny. His memory of facts is incredible, but it only manifests on the things he is interested in. Wish it would work on the story he just read in English class!
Are you receiving any support at the moment?
Currently Jaran does not receive any support. In 5th grade he did have someone working with him on his social skills after school, but now that he is in middle school the opportunity for after school social skills does not exist. We are currently trying to figure out what to do for his social skills. We do get respite hours which are so helpful.
What inspired you to set up your Facebook page?
After watching my video on Facebook, my aunt sent me a message saying that I was on to something . She said that I should continue to send out educational videos to help others. I thought it was sweet of her but did not think anything of it. I hadn’t even realized that I had said, “protectors not bullies” in the video, until the people who had seen it kept making reference to it. That phrase caught on and made an impact on people. That was when I decided to make a Facebook page. I also talked to a friend who said she was tired of seeing all the anti-bully assemblies where they talked about what not to do or what not to act like. She wanted to see something that taught others how to act and how to stand up for others. So this inspired me to make the page into something that would help others to educate their children on the unseen disabilities, to give them examples of positive ways to stand up for others, and to give those with special needs children a voice.
Protectors Not Bullies can be found on Facebook here
Part 2 of our interview with Stephanie can be found here