Social Stories

All I have to say is Speech Language Therapists are amazing.  Truly amazing.  Big Guy went and saw a Speech Language Therapist when he was still completely non-verbal and still very much detached from everyone.

And I will admit that I was completely skeptical of sending Big Guy to Speech I mean really - A child who doesn't speak to anyone. ever. anywhere.  In speech?    How could this possibly work?


I don't know how it worked  - but it did.  While Big Guy never spoke to his Speech Therapist he started speaking at home.  He started talking to me.  And most importantly his time at speech meant everything to him.  He looked forward to going and playing at Speech every week.    He was only 4.  He is now 6 and he still talks about Marie, his speech therapist and how much his time there meant.

They played games together, Big Guy 's world opened up a bit, his eyes were bright - he got to choose the games they played and he loved it.  Mister Potato head became a big hit - Feeding Cookie Monster cookies even got the odd laugh out of him.

His SLT taught us so many wonderful coping mechanisms.  One of which was to ease Big Guy's anxiety about new situations we should use social stories.    We googled like crazy - we found a ton of amazing resources on the internet and used those as the basis for writing ours. 

Being Angry

Sometimes I feel angry
.

All kids feel angry at one time or another.

When I feel angry, I will try to take one deep breathe nice and slow.



I will count to and try to calm down.

　

Then I will find an adult such as my teacher, Mommy or Papa

I will take them to our special Speaking Place.

I will tell them why I am feeling angry.

I may draw pictures to help me be able to explain what is upsetting me.

This will help me feel better.

　

Sometimes I get mad.

Sometimes I think people don’t understand what I am trying to tell them.

Sometimes I don’t understand what people are saying to me. This makes me mad. Sometimes it makes me really really mad.

 


We put in a picture of Big Guy every time our story said I or me and clip art images for all the key words (like angry, mad, people, safe place or speaking place).   We made stories for starting school, going camping and going on our train trip across Canada.  He loved them and we took them everywhere with us.  They made a great road trip activity - we laminated each page so not only did we have a story to read together we also had something that we could draw all over and then erase. 




By the end of summer of 2013,Big Guy's time at speech was over. The program run through the local hospital was only for children before they started school - the schools would then take over, but for Big Guy that meant no more speech, his school didn't have access to a Speech Language Therapist. 

Muddling through Selective Mutism for me was like diving in to a muddy pool.  All the information all coming at me all seeming to tell me so many different things.  Reward talking, don't reward talking, be open about it, pretend like nothing has changed.  I was so lost, I didn't know anyone whose child just woke up one morning and didn't speak a word to anyone for 6 months.  We lived up North, there weren't a lot of resources available that specialized in Selective Mutism, but there were amazing Doctors, Nurses, Social Workers, Speech Language Pathologists, Therapists, Teachers, and Friends who learned about SM Along with us. 

One of the biggest challenges for me to over come was that there isn't one magic cure, what works for one child won't necessarily work for another.  We found Big Guy responded best to a reward system - not a prize system but a reward system special fun family activities (with the odd dollar store prize thrown in every now and then) like pull out the sofa with a big bowl of popcorn and having a movie night pretend sleep over or Sundae Day. 

 

 

This was our first of many charts, simple but Big Guy loved sounding out the words and seeing what "prize" lay behind.   He chose the stickers that went on the board, helped me make the board and then put it up in our kitchen.  When he wanted to earn a prize he knew he could come get me and we would sound out the word together.  That board hung on the wall in the kitchen for weeks before we opened a single door.  But when he sounded out his first word it was amazing.

 

 

Guilt

We learned really early on that not a lot of people know about Selective Mutism.  We heard "he is just stubborn" "he will out grow it" and " he is just pretending" a lot

I also got the look a lot - you know the look- the one that judges you as a parent, the one that says oh so you did this.  Heaped on top of the guilt I already felt - was I too strict, not strict enough, was it genetic, was sending him to preschool too stressful?  What had I done or not done to make my beautiful, smart, funny boy stop speaking?
And why was there no one in our tiny isolated northern town who could help us. We felt alone.

So we ventured into the internet- trying to wade through it and find that one journal article that would cure our boy or at least help him to speak to us.  While there are lots of brilliant scholarly articles there many out there that blame the parents especially the mom.  And as a mom who was already struggling with the loss of her sons voice this hurt more than I ever could have imagined, I began to doubt myself more - I cried - a lot - I felt so much guilt and even though I knew deep down that I didn't cause big guy's selective mutism  seeing "experts" lay the blame on mom's everywhere was devastating.

Then one day,not long after reading those articles, I woke up  I realized I didn't cause it. Selective mutism is a mental health disorder and I didn't cause it but I could do everything to help my son.  We would be his therapist if none were available, we would be the experts if there weren't any near us and the wait lists in other towns were too long (we were on the wait list 20 months before moving - we are now on a new wait list in another province).

And so we delved back into the journal articles and studies and we began reading.

the quietest day

November 2nd 2012 the day my almost 4 year old said "I  not going to speak again till my Papa comes home." The first day I didn't worry, nor the second, on day three I was upset and on day four I was in tears. I begged, I bribed, his brother and sister tried to get him to speak, his friends, teachers everyone.  He had just stopped speaking -after two weeks his Papa was back, but his words were not.

His Papa didn't worry the first day, nor the second, but within a few days he too was worried.  It was nearly three weeks since we had heard our little boys voice. No "I love you" s no laughter, no silly stories not a single sound.

A visit to our family doctor told us that Jean might have "selective mutism" a little know social anxiety disorder.  Our (fantastic) doctor referred us to a paediatric resident who confirmed the earlier diagnosis and ruled out several very scary diseases.

We headed home with a name for what it was that our son had but we were still at a loss. What had caused his selective mutism, why wouldn't he talk to anyone, and what could we do to make it better?

Introduction

One day my then three year old son stopped talking and for the next six months he did not utter a single word to a single person.  Not a single word.  To anyone ever.

Tests, visits to doctors, at home therapy, tears lots and lots of tears, guilt and sorrow.

And then one day he spoke again but just to us and despite all our best efforts, therapy, friends and family he still hasn't spoken to anyone else in 3 years.

These are our adventures in selective mutism - a misunderstood and little known disability that can manifests it self differently in every person it effects.