Saturday, August 31, 2013

Selective Mustism

After a WONDERFUL day when D voluntarily got out of the house and sat on the bus into town, and was INCREDIBLY brave about all sorts of things, and M was brilliant at coping with a huge disappointment relating to her getting suddenly frozen in fear, I've been reading about selective mutism.  Had a conversation with husband recently and it turned out that he knew nothing at all about selective mutism whereas I did and assumed he must also... Sally-Anne conundrum to test Theory of Mind in ASD anyone?!

Anyway, reading up on selective mutism and I realise that it's sometimes triggered by a trauma, sometimes by an domineering mother (ouch!) and absent father (not true), etc, etc.  It's also often accompanied (in about 97% of cases) with Social Anxiety Syndrome.  D's mutism is not caused by her ASD, she talked despite having a separate communication and language delay and disorder.

Her speech comes and goes when she is ill, but she currently has no physical illness.  She has however started to show greater social awareness like nodding and smiling, or grimacing and shaking her head.  Recently she burst a balloon of Michael's and when she heard him crying, gave him hers and was then quite upset when he refused it. There's been a few other bits like anticipating the feelings of book characters etc.

I'm wondering how much of her social anxiety is based on her interactions with M - he is a communicator par extroidinnaire (except he NEVER stops).  She was at the beginning of her social awareness phase when M had a rectal prolapse and Ian had to rush him off to hospital.  Michael stood at the door refusing to leave the house until he had hugged D, and D was giggling (probably because she though M's wails sounded funny). I said something along the lines of "Don't laugh, Michael is sad, give him a cuddle and make him feel better". She did so and I put her to bed - I remember her face falling as she watched Michael go out the door and realised he really was going.  I wonder if she feels responsible for sending him away with an inappropriate response?

This may sound fantastical, but do remember that I always apologise as I find it a comfort to put sorry on the end of any sentence whose reception I'm uncertain of. I do this because my mum had terrible post natal depression, and I always felt responsible for this.  I felt that if I hadn't have been born, then my mum would never have suffered.  So on some level my ASD brain (remember the problem with social empathy) doesn't get that other people are responsible for their lives and happiness - I get it academically but not intuitively.

So would it be surprising for my child to be doing the same thing?  During our recent holiday all of her aggression and outbursts have been focused on Michael, but you know, guilt does that!  She may well feel guilty for sending him away at some level, and angry also!  After he was back from hospital, he poo'd all over the place, until we came up with the idea (from friends) of giving  him a cheap toy every time he poo'd on the loo. Guess which child wasn't suddenly being showered with toys?

M went away again recently, and D started to improve having just some time with us.  M was only on a sleep over, but I made sure during the day to highlight to D what was happening so she understood.  M loved it and came home wreathed in smiles and things seemed easier between them.

D is still scratching, hitting and pinching us all, but it is still mainly focused on M.  She seems calmer now she also gets a toy when she poo's, and even used the loo today, which she hasn't for about 2 months.

The only other time I've seen that look of extreme sadness on her face, was one time she was playing with a friend who didn't talk very much.  Suddenly this friend was joined by an older one who talked loads - D's face dropped as she realised she couldn't join in.  This was before she was dx, but was heartbreaking.

From what I've read selective mutism is involuntary, just like my sorry is.  Those that can talk about it, apparently feel like their throats were closing up when they tried to talk. I don't have those levels of anxiety but I HATE it when people tell me off for saying sorry. It's like a verbal stim, it feels WRONG if I don't and does worry me if I cant tell if I've upset someone or not (quite common!). So I can sort of get D's speaking stuff, and it must be SO HUGE for her. Oh my goodness, you know, a 6 year old having feelings this big and having to face them in a closing in world - and that's MY daughter. Not my fault, but MY daughter.

Waiting for CAMHS appointment to come through, hence making notes like this at stupid late o'clock at night.  I wouldn't sleep until I did anyway.  Waiting for assessment for respite care, waiting for return to school and return to Speech and Language Therapy. Wheels in Motion.

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