Yesterday (Saturday 7th March 2015) I attended a conference about selective mutism run by SMIRA (The Selective Mutism Information and Research Association), a selective mutism organization based in Leicester. The conference took place in St. James the Greater Church Hall in Leicester and ran from 10am to 4pm, featuring presentations from parents, professionals, and SMIRA's team alike. Here is a kind of overview of the day for those who were unable to attend.
The day began with a quick welcome message from Lindsay Whittington, SMIRA's Co-ordinator then the first speaker - Phil Thomason - took to the stage. He is SMIRA's International Representative, Facebook Group Administrator, and the father of two children - one who has overcome selective mutism and one who is currently showing signs of the condition. He spoke about his personal experience with raising children with SM in a multilingual environment, "spaces" for an SM child, change, how SM is being dealt with internationally, and the difference between reacting and pro-acting in regards to SM. For those who would like to see his presentation slides they are available for download in SMIRA's Facebook group.
Phil's presentation ran until 12:15pm when there was a lunch break. The food was great and during the break we got to have a quick look at the church building and the books and other SM-related merchandise that were for sale and on display. My parents got to speak with many other families who were in a similar boat to us, as well as get some advice from professionals and SMIRA's team. We even met a family who live in the same city as us.
The break ended at 1:30pm and Kate Jones - a Music Therapist - gave a presentation about why she believes music therapy can be beneficial to people with SM. Her Facebook group is here.
After Kate's presentation, Lucy Nathanson began her's at 2:15pm. Lucy is a Child Therapist who runs the organization, Confident Children which provides therapy and workshops for children who are shy, have low confidence, or suffer from selective mutism. She spoke about how she feels SM should be dealt with in a school setting, such as making it a whole-school intervention rather than just involving the teachers who work with the child regularly as well as appointing the child with a key-worker who is trained in dealing with SM. Lucy has uploaded a YouTube video outlining the basic do's and don'ts of interacting with a child who has selective mutism which she recommends be shown to all members of staff at the child's school. Her website can be found here.
The final presentation of the day took place at 2:30pm and was by Vicky Roe, a member of SMIRA'S team. It was about recent updates to the SEND code of practice and how this may affect SM children.
Finally there was a discussion led by SMIRA's team. The discussion was rather short as a lot of the questions had already been answered through out the day. We hung around a little longer afterwards to fuel up on snacks for the journey home and to have a chat with some of the professionals and other families.
After that the conference came to a close. My parents and I very much enjoyed the conference and would like to send a big thank you to SMIRA's team, all of the speakers, and everyone else who made the event possible. All of the presentations were very informative and helpful (particularly Lucy Nathanson's) and it's nice to know that there are people who are or have been going through a lot of the same things I have and that there might be hope for me after all.
Sunday 8 March 2015
Tuesday 10 February 2015
Selective Mutism in the Home Environment
The response of one's family can often be critical to the recovery of selective mutism. If a sufferer's family is not supportive and understanding it can further delay or even prevent their ability to overcome the condition. I was lucky in the sense that my immediate family were far more understanding than most (my extended family weren't so great but maybe I'll save that for another post), although they did make a lot of the typical mistakes.
One particular instance was when were away on a cruise. My younger brother was off playing with the other children so it was just my parents and me, sitting in one of the ship's restaurants. I imagine I was about 14 or so then. This was when my SM was at its prime - I had just left school around that time and I hadn't spoken to anyone outside of the family in months.
I was sitting opposite my parents at our table, scrolling through the music on my iPod when all of a sudden my dad looked over at me and said, "Lorraine, if you don't order your own drink then you're not getting one."
He wore that very matter-of-fact expression that my dad sometimes got when he was telling me or my brother something he knew we weren't going to like but he had already made his mind up about and no amount of complaining would change it. I answered it with my own stubborn glare.
I moaned. I whinged. I flicked things at him from across the table and when the waitress finally came over to us, of course I didn't say a word. In the end he did end up buying me the drink but this left a bad taste in everyone's mouth and only worsened my anxiety around speaking still.
Another such situation was when my dad had taken me to the library one day. This was also around the time that I had only just left school and currently I was very into Darren Shan books. Every time I went to the library I would get a few of his books out to read in my spare time. This time however, the library's collection of Darren Shan books were not where they were usually kept.
I told my dad this who led me over to the front desk. He repeated what I'd just said to the lady standing behind it who nodded and said, "Yes, we just had a Darren Shan event here so they'll probably be in the back still. Which one did you want?"
I wasn't sure which one I wanted because I was still waiting for one that I'd ordered online to come in the post so did I ask for that one or the one after it? It didn't really matter either way because the words wouldn't come out. I gazed at the librarian blankly who gazed back, waiting for a response. I didn't turn to look at my dad who was to the side of me but I could feel him watching me, growing increasingly irritated.
Eventually with my head hanging low, I managed to mumble, "Book number 4." or something along those lines and my dad had to clarify what I'd said to the lady before she hopped off through a door that supposedly led to the back room. The moment she was gone, my dad turned to me.
"She was trying to help you, Lorraine." he said, sounding exasperated. He didn't actually say, "So why didn't you just talk then?" but I could feel the words silently hanging in the air between us.
Like I said, I was lucky. I am forever hearing stories about people with selective mutism who were less fortunate than myself, having parents who would attempt to threaten or guilt them into talking almost on a daily basis. I can't imagine how difficult it must be to go to school every day and be jeered at by peers and teachers alike, only to suffer the same fate when you return home as well.
The bottom line is selective mutism isn't very well-known and most of this kind of behavior is usually put down to parents misunderstanding the child's silence. This isn't an excuse though; guilting and verbally abusing your child is never a good thing, SM or not. If you have made any of these mistakes though, it's never too late to change.
Parents, your SM child is not trying to hurt you. They are not trying to be manipulative, defiant, or spiteful. Likewise, you are not to blame for their SM.
You may not be able to make others outside of the home understand and accept your child but the least you can do as a parent is make your home into the most supportive environment possible.
One particular instance was when were away on a cruise. My younger brother was off playing with the other children so it was just my parents and me, sitting in one of the ship's restaurants. I imagine I was about 14 or so then. This was when my SM was at its prime - I had just left school around that time and I hadn't spoken to anyone outside of the family in months.
I was sitting opposite my parents at our table, scrolling through the music on my iPod when all of a sudden my dad looked over at me and said, "Lorraine, if you don't order your own drink then you're not getting one."
He wore that very matter-of-fact expression that my dad sometimes got when he was telling me or my brother something he knew we weren't going to like but he had already made his mind up about and no amount of complaining would change it. I answered it with my own stubborn glare.
I moaned. I whinged. I flicked things at him from across the table and when the waitress finally came over to us, of course I didn't say a word. In the end he did end up buying me the drink but this left a bad taste in everyone's mouth and only worsened my anxiety around speaking still.
Another such situation was when my dad had taken me to the library one day. This was also around the time that I had only just left school and currently I was very into Darren Shan books. Every time I went to the library I would get a few of his books out to read in my spare time. This time however, the library's collection of Darren Shan books were not where they were usually kept.
I told my dad this who led me over to the front desk. He repeated what I'd just said to the lady standing behind it who nodded and said, "Yes, we just had a Darren Shan event here so they'll probably be in the back still. Which one did you want?"
I wasn't sure which one I wanted because I was still waiting for one that I'd ordered online to come in the post so did I ask for that one or the one after it? It didn't really matter either way because the words wouldn't come out. I gazed at the librarian blankly who gazed back, waiting for a response. I didn't turn to look at my dad who was to the side of me but I could feel him watching me, growing increasingly irritated.
Eventually with my head hanging low, I managed to mumble, "Book number 4." or something along those lines and my dad had to clarify what I'd said to the lady before she hopped off through a door that supposedly led to the back room. The moment she was gone, my dad turned to me.
"She was trying to help you, Lorraine." he said, sounding exasperated. He didn't actually say, "So why didn't you just talk then?" but I could feel the words silently hanging in the air between us.
Like I said, I was lucky. I am forever hearing stories about people with selective mutism who were less fortunate than myself, having parents who would attempt to threaten or guilt them into talking almost on a daily basis. I can't imagine how difficult it must be to go to school every day and be jeered at by peers and teachers alike, only to suffer the same fate when you return home as well.
The bottom line is selective mutism isn't very well-known and most of this kind of behavior is usually put down to parents misunderstanding the child's silence. This isn't an excuse though; guilting and verbally abusing your child is never a good thing, SM or not. If you have made any of these mistakes though, it's never too late to change.
Parents, your SM child is not trying to hurt you. They are not trying to be manipulative, defiant, or spiteful. Likewise, you are not to blame for their SM.
You may not be able to make others outside of the home understand and accept your child but the least you can do as a parent is make your home into the most supportive environment possible.
Thursday 15 January 2015
Is that even a real disorder or did you just make it up as an excuse?
Above is a picture I recently posted on my Tumblr blog as part of my Selective Mutism Problems series. I still remember the first time I was accused of this. It was in my second or third year of secondary school. The class had a supply teacher that day and was in a different classroom to normal for some reason or another so the other students were even more hyper than usual.
While the poor supply teacher was attempting to restore some kind of order to the cluster of unruly teenagers, I was trying my best to go unnoticed as always when two girls - one whom I went to primary school with but didn't know much about (for the sake of anonymity I will refer to her as J) and the other who seemed to have a habit of hassling me (M) - got out of their seats and approached me. I had had a little rant about my selective mutism on a certain social networking site the night before and they - or J at least - seemed to have seen it.
“Do you really have that disorder...selective mutism, was it?” she asked me.
I began to nod but her attention was swiftly taken away from me and given to M who loudly announced, “She probably just made it up.”
“No,” J said patiently. “I looked it up online - it’s real.”
“Well, she probably just went onto Wikipedia and made the page herself.” M alleged. She looked as if she wanted to say more but J promptly shushed her.
“What? What?” M kept repeating as J hurried her back to their table, seemingly oblivious to how accusing someone of fabricating their disability could be offensive in anyway.
I’ll be honest, I was angry. At the time I wanted to get up and shout in her face, though I couldn't for obvious reasons. How could she erase my experiences like that? How could she erase the experiences of everyone who has or ever has had selective mutism? How could she just simply dismiss a condition she knew nothing about?
Then I realized I had answered my own question; she knew nothing about it. M could just effortlessly toss the condition aside because she was ignorant about it. Of course I don’t know for sure that she would be any more understanding if she were more knowledgeable on the subject however I feel that a large amount of the stigma directed at individuals with selective mutism is due to misunderstanding. Erroneous ideas like they are choosing not to talk to be manipulative, they are rude, they are defiant etc..
The fact is the majority of people don’t know what selective mutism is and that is one of the reasons why we need awareness. No-one should have to be accused of fictionalizing something they struggle with on a daily basis.
Selective mutism awareness is important so try to be as educated on the subject as you can and get the word out there!
The fact is the majority of people don’t know what selective mutism is and that is one of the reasons why we need awareness. No-one should have to be accused of fictionalizing something they struggle with on a daily basis.
Selective mutism awareness is important so try to be as educated on the subject as you can and get the word out there!
Wednesday 14 January 2015
Would a younger me be proud of who I am today?
"Would a younger you be proud of the current you?"
This is something I find myself thinking about quite often. Maybe it has something to do with my inability to let go of the past. I find part of me is forever stuck in my last year of primary school, with my group of three best friends and my obsession with a certain unpopular TV show. Even though those three best friends have long since moved on and that peculiar TV show ended almost 6 years ago, current me can't help poking her head back in every so often.
The answer to the question though, is probably no. 11-year-old Lorraine may feel a little sorry for me and will most definitely find me a little odd but I doubt pride would be something she'd experience if I suddenly were to appear before her this very second.
11-year-old Lorraine didn't have very high expectations (I suppose I had very low self-esteem even back then). She had hopes and dreams, of course but there were only three things she really wanted, none of which I have successfully managed to obtain:
1. A large group of friends and maybe a boyfriend.
Although I wasn't diagnosed with selective mutism back then, I was still a little on the unusual side. More than anything I wanted to be a normal teenager and my idea of 'normal' was to have a big group of about four or five friends whom I'd do everything with and a boyfriend who was part of this friendship group. As much as I tried to find my own group of chums to ride with, (I shudder at the memories of the times I changed myself, desperately trying to fit in with different groups. First was my emo phase, then my weeaboo phase, followed by many others.) having selective mutism more often than not makes it very difficult to converse with others and well, now my only friend is a girl I met online who lives in a completely different continent.
2. To live independently at a college or university.
This is another one of Little Lorraine's ideas of what it means to be 'normal'. I haven't had very good experiences with education to say the least. I left secondary school in year 9 due to anxiety, the school's inability to meet my needs, and numerous other issues. I was home-schooled for about a year until my parents found me an alternative provider. That wasn't too bad and I graduated from there with a few passed exams. It all started again though when I was accepted to a music college the following year. They were also unable to meet my needs and all the anxiety started up again. I started at a different college last year and had the perfect opportunity to make my little dream of becoming a residential student come true however I'm glad I didn't. It's a huge struggle to get up in the morning even when I know I'll be coming back in a few hours, imagine if I lived there! Not to mention my incompetence when it comes to self-care. I'd probably starve to death.
3. To be a published author.
Little Lorraine loved to write right from when she was old enough to hold a pen. I'm still finding bits of half-finished stories that she scribbled down on scraps of paper in my room to this day. She was convinced that she was going to publish a book before she was 16 and make millions. The closest current Lorraine has gotten to achieving this goal however, is writing this blog and posting a few of her stories online. I would still like to write a book one day, I'm just not as motivated about writing as I once was.
Even though I haven't accomplished any of Little Lorraine's dreams, if there was one thing I'm doing that she might be a tiny bit proud of, it might be my Tumblr blog, the YouTube channel I'm starting up, everything I've done or plan to do to help people with selective mutism or raise awareness for the condition. Little Lorraine has no idea what selective mutism is at this point but maybe she'll be happy that I'm at least trying my best to help people.
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