This is the story of Janet Fittry of Hustontown, PA, who engaged an entire community to raise awareness about Selective Mutism.
My name is Janet Fittry, and my 8 year old son, Ryan, was diagnosed with selective mutism in the year of 2006. We have had difficulty getting any services, and when we do, they don’t last very long. I have been researching selective mutism since 2006, and use much of the information I find on the selective mutism website.
I have many worries and concerns for my son. One of my fears has been how would he ever let anyone know he needed help or if he was being taken against his will. We teach our children to run, kick and scream; but a child with selective mutism will not make a sound. I was in search of something for him to use and someone suggested a whistle. The idea really grabbed my attention, and I started to give it more thought. The sound of a whistle anywhere will naturally make heads turn, and it doesn’t take batteries. I purchased my son a military whistle, which can be heard a mile away. I have him wear it anytime we are away from our home. I hope I never have to hear the sound, but just knowing he can blow it as a way to use his voice gives me a sense of security.
I have been trying to get services for my son for 3 years now, and most agencies have never heard of selective mutism. They end up asking me for information. I have knocked on many doors and seldom get to keep them open. It is very frustrating for a parent to be knocked down so many times. I refuse to tell my son I can not help him, or find him the help he needs! I will not give up on him! He is my son, and the good Lord gave him to me this way for a reason. I will not quit on him!
In December, my son’s birthday was in a couple of weeks, and I knew how much he did not like the birthday song, but he enjoyed having me make cupcakes for his class. I had read different information that it is important to make others aware of his disorder so they don’t keep trying to get him to say something. So I got this “crazy idea” one day to purchase a bunch of cheap whistles and make up a packet with some flyers giving information about selective mutism, a letter of concerns from me, and a flyer with information from the Special Quest Organization. I thought we could celebrate his birthday in a different way since he has difficulty with the attention generated from a party plus we could accomplish some positive things in the process.
I shared my idea with Ryan and he liked it. I contacted the local school guidance counselor and told her my idea and was given the okay to purchase whistles for each child in his class. I then made a video in which I explained the purpose of the whistle. I submitted it to my son’s teacher for her to show to the class.
My kids helped me fold, staple, and bag up all the information, and the whistles. I took empty cereal boxes and used them as display boxes for stores in our community to sit on their counters. I asked for .25 cents for each whistle purchased. I also asked that on December 20th at 7pm, people would go outside and blow the whistle to be the voice of someone who was afraid to talk. My son really liked the idea that others were buying whistles to blow on his birthday. The case of whistles I purchased contained 144 whistles. We had figured if we sold all the whistles we would raise $36.00 for “Rid the Silence” of selective mutism. It was not much, but what we have accomplished in the process was amazing. We have managed to spread information about selective mutism, made many people aware of Ryan’s disorder, and helped others just like Ryan. We not only sold 144 whistles, but raised $85.00!
Ryan looks at himself differently now. The sale of the whistles has make him realize he is not alone. He is not the only one who is afraid to talk. He is not as different as he thought. I have noticed a difference in him when we are in public. He seems a little more relaxed knowing others understand they shouldn’t try to get him to talk. The best thing for me was having my son come home on the day I sent cupcakes into school for his birthday, and his telling me that he had a GREAT DAY, because no one sang “Happy Birthday” to him!
The outcome of the whistle sale was a learning experience for him, and a rewarding one for me! It was truly a simple way to make others aware of selective mutism and to also raise funds for “Rid the Silence” in the process. My kids enjoyed helping put the whistle information together, and knowing they were doing something important. Anyone can do this, and you can coordinate the project with your own child’s birthday. I look forward to doing it again with my son this coming December. The greatest tip I can give any parent who has a child with selective mutism is to not give up! They really do need us to be their voice. Don’t be afraid to go the extra mile. It truly is worth every step!