Thursday, January 23, 2014

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 :)

#selectivemutism #shychild #family

29 comments:

  1. Hi! A good friend of mine is going through the same thing with her son, thankfully he is just turning 5 and has a very supportive family and friends. I'm moving to the Scottsdale area and would love to know the practice you took your daughter to so I can refer them to my friend. Thanks so much! And I hope your daughter is finally feeling her confident self out of the home. Xo Jillian

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  2. The Melmed center in Scottsdale, Az is an excellent facility! I wish your friend and her son the best of luck in breaking his silence!

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  3. These children are truly prisoners in their own bodies. It is excrutiating to watch as a mom and the most beautiful thing to see them overcome it!

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  4. This blog site is pretty good! How was it made . I view something genuinely interesting about your site so I saved to my bookmarks . You can visit my site. kids counseling

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  5. I'm so glad you pushed and pushed and found your daughter someone who specialized in SM. It was really heartwarming to read how your daughter has had some success with the therapies and is now more confident in using her voice, and engaging with the kids and external world around her!

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  6. I know a lot of kids who are considered shy and it's left at that. I'm glad you were able to figure it out. I hope she continues to progess.

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  7. I'm glad you were able to pin point the issue and find help for your daughter! Yay on the first sleepover too!

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  8. Wow, you really did your research and fought hard to help her figure this out. You're a heck of a mom and I know she's so thrilled to be able to start communicating more.

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  9. I have never heard of this before and read your post word for word. Amazing that you were able to find the source of her fear and help her break through it. Hugs to you and your family.

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  10. I have never heard of this before and now it's on my radar, my two-year-old is painfully shy and afraid of strangers. Will have to keep an eye out to see if this continues beyond normal shyness. Thank YOU for this post!

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  11. I am amazed that there are not more pediatric specialists for this disease. I applaud you for sharing your daughter's story. Hopefully it will help other parents to speak up for and seek help for their children while they are still in early grade school.

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  12. Thank you all for reading our story! My daughter continues to fight her Selective Mutism and is working hard at trying to overcome her fears! We have seen progress and hope it continues! She will be in eighth grade in the fall and it was just this last year that anyone outside the home had even heard what her voice sounded like. Even family and close friends had barely heard her speak. It is crucial Selective Mutism gets more awareness so these children can get the help they need before it's too late! Please spread the word! Thank you again

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  13. My friend's daughter would only speak to her mother for years... around puberty she started talking to people. She is still not a chatter box, but it doesn't cause issues anymore.

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  14. Your daughter is fortunate that you took the time and energy to search for someone that could help her. I know you're her mom and want the best for her, but so many parents' are unwilling to help or just don't know what to do. I was so happy to read that she is making progress. It sounds like she's come a long way in the year! May there be many more sleepovers ahead!

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  15. That's gotta be tough since shyness is considered a "normal" trait and many people would just write it off as part of growing up. So glad she's making progress and you seem to be on a good path.

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  16. That's great that you found someone that can help. I had never heard of this. Thanks for sharing this information.

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  17. This is interesting, I had never heard of it before. Interesting that about 7 in 1000 suffer from it as well. I'm glad that she is getting the help she needs!

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  18. I'm glad that you were able to identify this and that she is getting the helps she needs. I hope sharing her story helps others too.

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  19. I'm so glad you were able to figure out what it was and that she is making progress. Good luck with your journey!

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  20. I have never heard of this, but glad you explained it in great detail. Glad you're knowledgeable enough to help your daughter deal with this.

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  21. I hadn't heard of selective mutism before. It's great that you were able to find treatment that has helped her. I hope she continues to do so well!

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  22. I hadn't heard of selective mutism before. It's great you found a treatment that is working, I hope she continues to progess well!

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  23. I've heard of selective mutism and wonder if a friend's child might have it - I'll refer her to your blog to see if your story resonates. Thanks for sharing.

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  24. Thank you for sharing this! I once worked as a camp counselor for a little girl with selective mutism. I had read many books about it and was really fascinated by it. One day while the little girl was playing on the playground I overheard her whisper "a ladybug". I picked up the conversation as if she had been talking to me and it wasn't anything unusual. After that she started talking to me all the time. No one believed me though! They thought I made it up until her mom came in and said the daughter had told her that she talked to me. I had kind of forgotten about that special little girl until I read your post. Thank you for bringing the memory back.

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    1. That is wonderful you were able to break her silence!

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  25. Thank you for sharing this. I am a teacher and I knew something was not right in a little girl I had last year. She was over the top shy and it was really hard to watch. So with much persistence I was able to get the parents to look into some ideas of what might be causing it and it is amazing to see the difference in a child that is getting help and that as a team we know how to handle. I didn't know much about this and actually had the parents figure out the name from someone they knew. It is something that really effects the child so much. I am so sad to hear that you never had a teacher help you find the solution for your daughter before you were able to find it.

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    1. I try and share this post at least Once a month to try and get some awareness out there! Most doctors and Pediatricians have not even heard of Selective Mutism. When I tell teachers about it now, they all can recall at least one child in their career that seems to fit the description, but had never heard about it and just assumed these students were overly shy. It is just something that needs more awareness! It is truly heart breaking to watch and to live through. A very debilitating disease :(

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  26. Poor kid =( How come the teachers didn't think of this and you had to find this out online? Instead of calling you into meetings as if you and your daughter were guilty of some horrendous crime (maybe not but I would have felt that way). I think teachers needs to be made aware of selective mutism during their training.

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  27. such a great article, and she's a beauty

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