My child has Selective Mutism...now what? #selectivemutism
I remember the day she came into the world. I remember the fear of the unknown and the excitement of having my first baby. Am I going to be a good mom? Will I know what to do? How do I know when she's hungry, or tired? Am I going to have complications in the delivery? Is she going to really be a girl, I better get something blue just in case or yellow...yes yellow! All these thoughts running through my mind as I prepare to go to the hospital.
My daughter was born first thing in the morning. After 18 hours of labor and an hour and a half of pushing there she was! Out in this crazy world, no longer protected by her mommy shield. As she began to cry I could physically feel my heart filling up with so much Love. You really can't explain that feeling, but all moms know it! A whole new level of love only a mom could feel! She was beautiful! The most beautiful thing I had ever seen In my lifetime. All I wanted was her to be happy and healthy in life. I wanted her to have everything she ever needed. I wanted to be her protector as I was when she was in the womb. We brought her home and I was so scared! Every little sound she made or cough I would panic and pick her up! She slept on my chest for the first month so I could hear her breathing and feel her heart beat. I was totally freaked out by (S.I.D.S)! She was growing at the normal rate and was healthy besides having colic (which made for some sleepless nights) but all in all a healthy child. My daughter didn't really crawl, she was content with the toys I put in front of her and didn't have the need to go anywhere. She started walking a little later than the toddlers in her playgroups, but again she was just very content with where she was and never very outgoing.
My daughters first birthday came and we had almost a hundred guests. food, drinks, bounce house, crafts...everything! Now you have a toddler you start to envision going to soccer games, girl scouts, sleep overs, and all the fun things kids do in their childhood. I couldn't wait! I ran a home daycare and my daughter had three other girls her same age she was growing with. The girls played, did crafts, ate, slept, did everything together. My daughter had a great time playing with these girls, she seemed normal until their parents would come to pick them up. My daughter like the typical "shy" child would hide behind my legs when the parents would say hi to her. As the years went on the same thing would happen, while out of the house when someone would say hi or ask her her name she would close up and hide. typical "shy child" right??
My daughter started kindergarten. At the first parent teacher conference her teacher told us she was very "shy" and did not engage with the other children or speak when spoken to. I thought well that's kind of rude, I can't have my child not respond when someone is talking to her. That night I sat my daughter down and told her, "it is OK to be shy, but not OK to be rude!, when someone says hi, you need to say hi back!" I would discuss Her shyness with the teacher when I would drop her off and pick her up, my talk did not help! I went to the store and bought a poster board and some stickers and made a chart. The top of the chart read "being friendly has its benefits" every time she would say hi to her teacher or bye she would earn a star! when she got five stars she got to pick a prize out of a treasure box. It kind of worked for a couple weeks then she didn't care to get prizes. I was frustrated beyond belief!
Every year that went by nothing changed. My daughter was getting older now and still was not growing out of her shyness. Every parent teacher conference was the same. "your daughter seems very "shy" and does not participate in class", "we are unable to test her reading because she won't talk", "your daughter doesn't have any friends, because she won't talk to anyone", "this is going to effect her grades". We were called into special conferences...always the same thing. What was I suppose to do!? I can't put my hand down her throat and pull her words out! I can't make her talk! No soccer, no girl scouts, or sleep overs. She was interested in nothing outside the home. Finally she was in junior high and yet again we were called into a conference with her teacher. My husband and I sat there in front of a panel of teachers, none of whom had ever heard her voice. The teachers told us they were going to have to fail her for lack of participation. I did not think this was fair because she always had aced her exams, was in the 98 percentile in the state standardized testing, and had always been very "book smart".
We returned home devastated and told her they are going to fail her if she does not start talking at school! The next morning I sent her off to school heart broken that she was this uncomfortable outside the home and was not getting to live the quality of life I had always hoped for her since that day in the delivery room. I started doing my own research and came across SELECTIVE MUTISM. I read stories from other parents that matched ours to the T! The child is completely normal at home. They talk and interact with the family, they are fun and outgoing but as soon as they leave the front door they climb inside a shell and stay there until they return home. They do not make eye contact with anyone, there shoulders curl, they appear frozen in their own skin, and they are mute! I watched some heart breaking YouTube videos of folks with this disease. That afternoon when my little girl got off the bus I asked her to sit with me at my computer and showed her the YouTube video I had watched earlier. Tears began rolling down her cheeks as she told me, "that's what happens to me! my words get stuck in my throat and won't come out! I want to talk, the words just won't come out!" I now knew I needed to get her help!
I called her pediatrician the next day to set up an appointment. We went in to her pediatrician, they asked why she was there. I told them about her being mute outside the home and I believed she had selective mutism. For the next twenty minutes that darn doctor tried everything to get my daughter to talk to her! Putting someone with selective mutism on the spot to talk is the #1 thing you ARE NOT suppose to do! The person closes up more and climbs deeper inside their shell. The pediatrician recommended I send her to see her personal therapist. This was not good enough for me, I wanted someone who specialized in Selective Mutism and knew how to interact with my daughter. I knew a regular therapist was not going to work because my daughter does not talk outside my home! I searched and searched the Internet and found nothing! Finally I found there was a doctor in another state, which I was considering traveling a couple times a month if this was going to give my daughter a quality life. After weeks of research I had finally found a medical group in Scottsdale, AZ that had Selective Mutism on their list of specialties!! I made my daughter an appointment! My daughter has been seeing her doctor there for about a year now and I am happy to report, people have now heard her voice! The doctors were able to break her silence and I am forever grateful! My daughter has attended a junior high dance, is in an after school art club, and hosted her first sleepover! She has come a long way, but still has a way to go. Do I think selective mutism is treatable? Absolutely! Curable? Only time will tell.
What is selective Mutism you may ask? This is why I wrote this super long story on my blog to get the word out! Most people, teachers, doctors, and even therapists have never heard of it. Selective Mutism is a complex childhood anxiety disorder characterized by a child's inability to speak and communicate effectively in select social settings, such as school. These children are able to speak in situations or settings where they are comfortable, secure, and relaxed, such as at home. More than 90% of children with SM also have social phobia or social anxiety. Selective Mutism is not brought on by a tragic event, the child is born with it. Studies have shown selective mutism may be genetic and the child often has a family history of anxiety. This disorder is quite debilitating and painful for the child. Children and adolescents with SM have an actual FEAR of talking and of social interactions where there is an expectation to speak or communicate. It is common for children with SM to have a blank facial expression and never seem to smile. Many of these children have stiff and awkward body language when in a social setting and seem very uncomfortable and unhappy. Some will turn their heads, avoid eye contact, curl in their shoulders or completely withdraw into a corner or away from the group seemingly more interested in playing alone. Studies vary a little bit but it is said about 7 in 1000 children suffer from selective mutism in the U.S. This is a very sad disease that needs some awareness!! We need help to break the silence and give our children their voices back! Thank you for reading and have a wonderful day :)