Silent Voices: Leanne’s Selective Mutism Story

I’m quite thrilled and honored to share another voice of Selective Mutism as a result of Meagan sharing her story with us about 2 weeks ago and then posting a followup on her YouTube Channel.

My second guest post comes from 16 year old Leanne.  Her touching story reminds me of how important having an understanding and supportive friendship is to the selectively mute child.   One of the key elements a parent can do is to find out who that friend your child seems to warm up a little with and do everything you can to maintain contact with that friend – inside and outside of school.

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I first started showing signs of SM when I was about 18 months old – I’m not sure how people would notice it that early but they did. I wouldn’t talk much outside of the house, and I guess everyone just thought I was shy.

I was diagnosed with Selective Mutism when I think I was around 5 years old. Before I was actually diagnosed I just remember getting shouted at alot for not talking even though I couldn’t help it because they just thought I was putting it on and choosing to be this way.

After I was diagnosed with SM, I was referred to CAMHS (Child and Adolescent Mental Health Service), where I was given treatment for shyness… and not anxiety, which obviously didn’t work because as we all know there is a HUGE difference between shyness and anxiety. When they realised that the treatment wasn’t working, I was discharged from there, and basically given up on, when they said there was nothing more that they could do.

No one in my first school ever really understood me for having SM, and in year 1 I was bullied quite badly by some year 2′s. The bullying was so bad that I ended up in hospital and the teacher’s attitude to this incident was absolutely terrible. When my Mum went to talk to the school after it the teachers just didn’t seem to care and said there was nothing they could do about it, even though the bullying had got really serious. So I left that school.

I then moved to another primary school where everyone was alot more accepting and being at that school was MUCH better. I communicated to everyone in my year group by using a whiteboard, but it was hard to write anything down to a teacher, I’m not quite sure why, but it was. So if I was stuck I would ask the person sitting next to me using a whiteboard or I’d just not ask for help at all. If a friend would come round to my house, or if I went round to a friend’s house then I’d be able to talk to them, but I wouldn’t be able to talk to their parents or brothers and sisters, etc.

When I moved up to high school there was only one time where I had friends over to stay where I talked to them. That was the last time I ever talked to friends who came round. In high school I met a very good friend who was the most accepting friend I have ever had. She never even asked me why I didn’t talk she just treated me like I was just a normal person just like everyone else. We’d pass notes constantly in lessons, and even at breaks. Most of the time she wouldn’t actually be talking when she talked to me, she’d pass notes just like me. She was my best friend and even now she still is. We were basically inseparable, we’ve done everything together. But then Christmas of year 8… she moved away. School got ALOT more harder without her. I had no one who really understood me. I had other friends… but was never able to pass notes to them like I had done with her. Gradually my anxiety just got worse and worse until it got to the point where I never communicated with anyone at all in school. Only occasionally when I really was stuck and needed help with something. Those were the times where my frustration just got worse and worse and everyday I just wanted to be normal and be able to talk just like everyone else. Everyday was stressful and I don’t know how I managed to go through with it.

From about Easter/summer time of 2009, I stopped going out with my family as much, I went out with them sometimes but I spent most of my time chatting to friends online – that was the only time I ever felt normal, where I could actually join in with conversations with people my own age and show the real confident, talkative me. Things got sort of easier for me once I got the internet, I always had something to look forward to when I got home from a stressful and frustrating day at school.

By December 2009 though, I began to feel quite depressed and felt like I couldn’t cope anymore. For some reason I’d always felt scared about looking up Selective Mutism online even without anyone knowing that I had… I still don’t know why that was. But I’d had enough; SO much that I just ended up looking it up… where I found YouTube to be the most helpful place, where so many people had shared their story and shown what SM was like for them. I then realised that I wasn’t alone in all of this and even though I’d never met anyone with SM before, there WAS other people around with the same thing, which was 1 of the most relieving things ever! I realised the whole cause of this was anxiety, and that I wasn’t mad or anything. Before I looked it up I’d always felt so confused and never really knew why exactly it was that I wasn’t able to talk to people, but finding out why was really good for me.

But there was a problem. I’d NEVER discussed SM with my Mum or Dad before, it just seemed a REALLY awkward thing to talk about with them, so it just never happened. So asking for help from them was going to be a very difficult thing to do. But around January/February time 2010, I was staying off school alot because my anxiety kept giving me headaches which were quite bad… meaning that I had to stay off. Then on one of the days I ended up getting into an argument with my Mum, who said that I couldn’t keep having all these days off school because it was really important that I did as well as I could because it’d be hard for me to get a job because I don’t talk. Then I got annoyed and told her that it wasn’t my fault that I couldn’t talk. In return she said that she wasn’t the one who made me choose not to. That’s when I told her it wasn’t my choice and never was my choice and it was all down to anxiety. Then she got in touch with the school who then sent the educational psychologist in to help me.

When she first came in I was really excited, really happy that I was going to get better. She came in for about 2 weeks in total and after that just stopped coming altogether. The first week she didn’t come I was a bit disapointed but still excited because I thought she’d be back the next week… she wasn’t and she never did end up coming back. It made me feel really misunderstood and like no one cared about me. I’d been given up on all over again…

Then work experience week at school came… I wasn’t given any help with finding anything that I could do for it at all. And I felt so depressed I just didn’t even think that there was anything that I could do anyway. I never thought I’d ever do anything with my life. I felt like a complete failure. I spent the whole of work experience week at home… infact after that week I spent the next 3 weeks at home after that as well. I was too afraid to leave the house for 4 weeks. 2 of those weeks were the Easter holidays though.

After the Easter holidays I reluctantly went back to school, and then went to the doctors to get referred back to CAMHS again… where I thought I’d be able to get an appointment straight away… but then was told I could be waiting months before I actually got one. After about 2 weeks of on and off days going into school, I just stopped going to school altogether. I was in year 10, which was an important year so it wasn’t exactly the smartest thing I’ve ever done… but school just got way too stressful and was giving me panic attacks everytime I tried to go in. I then spent a whole 2 months inside the house and never went out of it not even once because I was too afraid. In that time I would have to say it was probably the most depressing 2 months of my entire life. I never got any work sent home from school so I was ridiculously behind in everything.

Then the school set me up with a self-confidence course which is also a place where people catch up on work that they’ve missed if they haven’t been to school for whatever reason. The self-confidence course is supposed to help you get back into school and stuff. I remember feeling really happy on that day, it was horrible being stuck in the house for as long as I was but going out for the 1st time in 2 months made me feel so happy and it was such a major improvement for me. I went there every Friday afternoon, and every Monday afternoon for about 6 weeks when school ended and it was the summer holidays. After going there it made me feel so much more happier and I got most of my confidence back again.

In the summer I only went out a few times, but for some reason that never really bothered me that much. At the end of August/start of September I began to get really bad chest pains and trouble breathing. It terrified me because I was actually convinced I was having a heart attack or something. I went to the hospital and had to stay in overnight and had tests done on me, but they were all ruled out to be anxiety/stress related. I made myself a goal to go back to school in September which I wanted to stick by and I acheived it!

At the start of August I had my 1st appointment with CAMHS where there was a psychologist who knows all about SM, and he’s treated people with SM before and they’ve been cured by him. So he’s really confident that he can cure me… which makes me SO happy to hear that from him!!! :D He’s even told me that he’s NOT going to give up like everyone else has done over the years, and there’s also another psychologist coming in November (next month) who apparently knows all about SM as well, so hopefully she should be able to help too!

Now I’m 16. School is still extremely hard for me, no one understands of course and sometimes people will laugh and stuff, but I don’t let that bother me anymore. Those people are just the ones who don’t understand and don’t know who I really am, so there’s no point getting upset over them. Now I’m on a part time time-table, so I’m not in school full time like I used to be so it has got a bit easier for me. I go to the same place as the self-confidence place twice a week to catch up on work that I’ve missed. I still hardly ever go out on the weekends, and I still spend most of my time online, but I’m so much more happier than I was a few months ago. Even though I’m still only talking to my immediate family at the moment and no one else, I’m still confident that someday I WILL talk to EVERYONE! My goal is for me to talk before I leave school in May next year. At least then I’ll be able to say I haven’t gone through my entire school life not talking. At the moment at CAMHS, I’m learning relaxation methods which’ll help alot in curing my anxiety, I’ve also just been diagnosed with generalized anxiety disorder and agoraphobia and also social phobia. I’m not gonna stop trying to beat SM, until I’ve beaten it!! SM will NOT win and it won’t take over my life! I want to show people who I really am… I don’t want them to think I’m shy or quiet or anything like that because I am NONE of those things! Underneath this silence is ME, a confident, and loud person, which very few people have ever seen before, the closest most people have ever seen would be me online, but even that wouldn’t show who I am completely. But I do have to say, I am REALLY greatful for all of my online friends who’ve always stuck by me, and not given up on me or anything like that. The ones that have just loved me for who I am and nothing but that. The ones that don’t seem to mind that I have SM. Those are the people who I can’t EVER thank enough and the ones who I wish there was more of around!

When I’m older I’m not sure what I’d like to be, but I think maybe someone who helps people with SM, because I know just how hard it really is and how horrible it is to be misunderstood, and I honestly don’t want anyone else to go through with what I’ve been through. I wouldn’t wish it on anyone at all, no matter who it was! At the moment I’m working on spreading awareness for SM, because it’s selective mutism awareness month. I stopped caring about what anyone else thought of me, and put my profile picture on facebook as an SM awareness one and put a bit of info about SM, and about 10 people maybe? Have liked it, so it shows that it’s working to help spread awareness which is a good thing! :)

If there was anything I could say to the people that don’t understand me, it’d be that I’m a normal person just like you on the inside. I might have a bit more anxiety than you, but EVERYONE has anxiety… which is normal :) Just I have it at much higher levels than you!

Oh and even though SM seems like it’s all bad… it’s actually not. Being quiet for so many years has made me more accepting to other people, it’s made me understand people much more, I can often see right through people’s personalities so it’s often quite easy to know who and who not to trust most of the time, which is a good thing because it’s hard to trust people when you have SM.

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For more information about selective mutism please check out these links –

http://www.selectivemutism.org/

http://www.selectivemutismfoundation.org/

http://www.selectivemutismcenter.org/

If anyone would care to submit a guest post regarding their selective mutism story or their child’s selective mutism story, please drop me (Casey) an email at:  raisingsmartgirls@yahoo.com.

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6 Responses to Silent Voices: Leanne’s Selective Mutism Story

  1. raisingsmartgirls says:

    Leanne –

    Thank you so much for sharing your story. Yes, I do believe there is an honest effort on the parts of parents and SM sufferers themselves to do their part to spread awareness, to help give hope, and to help themselves through sharing their stories. I believe that every SM individual can turn this adversity into a positive challenge that will result in positive growth (even if it’s just baby steps). The reward will come not at the end, when speech is present, but in the process of gaining the self-respect and the determination to work with what you have, to slowly build on successes. I think the challenge posed triggers a healthy development of a useful trait called PERSISTENCE.

    And yes, there is a HUGE impact on the success of the person when all the support persons in their lives understand that being unable to talk is not shyness NOR is it willful disobedience.

    I’m so glad you found some compassionate support and I wish you the best of luck. Please come back and let me know how your story unfolds with the additional help from the SM specialist.

  2. Mr. RSG says:

    Leanne,

    I also wanted to say thanks for sharing your story and offer some encouragement…

    If you look through the other posts here, you’ll see about our middle daughter, K, who started our whole SM journey. She wasn’t shy or quiet at home, but in school situations she was totally silent and looked terrified a lot of the time. By getting her some help and some special considerations at school she’s now able to speak up – not only in her familiar school situations, but even in new places outside her comfort zone.

    I really noticed how much of a change she’s had when I picked the kids up from school the other day. A mother of one of K’s friends was nearby while we waited for the older group of kids to be dismissed. K was running around, yelling to her friends, hugging nearly anyone that walked by, and just being a “typical” 7-year-old. This mother looked at me and said, “Well, K has certainly come out of her shell.”

    Looking at her there laughing, hugging, and shouting I could only agree, “Yes she certainly has.”

    I have confidence that with some help and support, you’ll be able to let the “real” you come out and show everyone as well.

  3. Leanne says:

    You’re welcome 🙂

    I wish I’d have been able to spread more awareness before now, but I was always afraid of people’s judgement and like what they’d say or if they’d make fun if I told anyone about it. That doesn’t bother me anymore though. I wanna do what helps ME! 🙂

    Yeh, not many people do realise the difference between shyness and anxiety. I guess I must look quite shy in school etc. But I’m not shy at all, it’s just anxiety. I always wondered that maybe because I was treated for shyness when I was younger that maybe that could be why I’m not shy today… but then it just could be that I’m just naturally not a shy person.

    Thanks, I’m glad I found the help too 🙂 And I will let you know how that goes once I start to improve, which I’m sure within no doubt I should start to VERY soon! 😀

    – Mr RSG

    I’m really happy to hear that K has been able to get over SM! It always makes me happy to hear about people getting over SM because I know that they’ll be much more happier now… which is always a good thing 🙂 At the moment I’m exactly the same as what she was, and it gives me hope that I can improve just as much as what she has too! 🙂 I feel like I missed out on most of my childhood because of SM and had to deal with things that no child should’ve had to put up with, but seeing that K has got over it at 7, it’s good to see that she’s not going to miss out on it like I did. 🙂

    Thanks 🙂 I know that it’s not going to be easy to get over SM because of the other problems it has caused over the years, but now that I’m more determined than ever to just… get rid of this then I’m sure the ‘real’ me should start to come out very soon… 🙂

  4. raisingsmartgirls says:

    Leanne –

    One thing I’ve come to realize about many children with selective mutism, is that 1) they are usually very bright or creative in some way, 2) the children are MUCH more harder on themselves than other people are (and that’s the way anxiety is).

    It would not surprise me to find out if you are a very bright/creative young woman.

    Anxiety lies to you, you know. Anxiety tells you things that are false about you and the world and people around you. And it’s tied into perfectionism. “If I can’t do something perfectly, I will be too afraid to do it at all”. Remember, many of the greatest inventions came out of a failure of something to do what it was originally supposed to do.

    Our brains are powerful things. It can tell us what is true and tell us what is not true. Our brains have a nasty habit of reinforcing the false things, rather than the true things. It’s your job to quiet the voice that lies to you and listen really carefully for the voice that rings true for YOU!

    If you aren’t already doing it, start journaling. Julia Cameron, in the Artist’s Way, talks about writing 3 pages of stuff every morning…whatever it is that comes through your brain – the good, the bad, the ugly. Just get out the negative messages so you can get on with your day. And then don’t read them after you get them out. See, what you may not know is that journaling purges a lot of the messages, so that it can clear your thoughts for the day.

    I have a friend that tells me that our thoughts are just like any other input. We can choose to pay attention to them or ignore them, though we think because they are coming from within, they MUST be so very important. They really aren’t. We give our thoughts power, they don’t take our power from us. We can choose to keep the positive messages and ditch the negative messages. In a way, consider yourself lucky, because you will be learning a LOT about yourself through this process. It’s very empowering to help others and get valuable feedback in doing so.

    By the way, I’m planning on searching for more resources to put on this blog as a result of Meagan’s and your stories. And I’m also looking to become a state coordinator for the selective mutism group. So, you two have inspired me to spread even more awareness and help, so thank you for that.

    And, your selective mutism was a protective measure. One that served you for a time, but no longer does. You will find other ways of dealing with your anxiety.

    Oh, and even though I didn’t have selective mutism as a child, I feel like I lost a lot of my childhood because my family fought a lot (my mother divorced when I was 2, remarried when I was 5). I COULD speak, but it didn’t make much difference because my family was just mean. No one wanted to hear me in my family, no matter even if I shouted. I was always the one getting into trouble for opening my mouth at the wrong times. I also didn’t have friends. My older sisters did, but I managed to not have any except one for a short period of time – partly because there was no one my age and partly because I was simply too weird for most of them.

    Anyway…now I’m just a big kid, enjoying life through my daughters’ eyes. So, don’t think you’ve completely lost touch with the joyful wonder of being a child. Grow up, but not completely. Save a little bit of your childhood wonder because it will do you good in your adulthood.

    Yes, I do believe you will be seeing good things come of this. I love the energy I hear from you about it. I think that is part of the battle right there.

  5. BJ says:

    I’ve just read Megan’s and Leanne’s stories and was touched by them. Until a few weeks ago, I never knew there were people out there like me or that there was a word for it. I was always accused of just “being shy” or “quiet.” I wasn’t able to speak to anyone outside of my parents and siblings all through elementary school and high school – except maybe for a nod of the head or short answer.
    But you girls are still so young, there is hope to overcome this, at least enough to have a fairly normal life. I’m in my 50s now and still struggle with SM, but I also have a husband, two children and a job I love. I still have difficulty talking on a “social” or “friend” level, but I’ve found that by putting myself in a job situation where I have to talk on a professional level, I can.
    Leanne, you sound like such a sweet, intelligent girl. I’m so glad you are spreading the word about SM. Always remember the “real you” is definitely worth knowing. Thank you for sharing your story.

  6. raisingsmartgirls says:

    BJ –

    Thanks for your words of encouragement. I’m so glad to hear that despite your struggles with SM, you have a very positive outcome – husband, children, work you love.

    I’m so glad you’ve come forward to share a little bit of your story. I appreciate you doing so. I know others will too.

    Best wishes to you and your family.

    Casey.

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