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.

Wednesday, August 21, 2013

I love this world and it's beautiful except my child is so seriously depressed she wont eat, sleep, potty, dress, play or go outside independently. I love the world yet the last week I've hardly seen outside my front door.  I love the world and I'm so proud of my son for coping, and I'm hoping he wont be screwed up by this in the future. I could fucking scream, except my belly is frozen with fear.

Sunday, August 18, 2013

Another letter to teacher's of ASD kids.

 Dear teacher,

This is specifically for those of you with the overbearing parents, who refuse to believe their child is autistic, who just mollycoddle their little darlings and expect you to do the same.  My big secret - I was one too! Let me share why with you...

By the end of my daughter's first week at pre school her teacher asked me to ok a referral to speech and language therapy.  I didn't ok this as I'd already sought out our own referral, which as I said to you was hopefully coming in soon.  You very kindly let me know my daughter should be potty trained, especially as you did not have the staff members to change her nappies for her.  You also kindly invited me to a special session on potty training where I brought up with another mum, where you listened in, my worries about my child's autistic behaviours.  You then said I shouldn't be worrying so much about my child not being potty trained which I wasn't.  I was there because you invited me, but maybe there were crossed wires somewhere.

The next snapshot is when I discussed my fears about my daughter being autistic with the nursery nurse over the water play on the open stay and play day.  She told me about her two sons, also on the spectrum, and agreed that I was probably right.

Do you remember the cakes I made for you at Christmas to say thank you?

Do you remember me bringing PECS into school to try and combat my daughters school refusal - you said you would use them as I asked you too, but then you changed it to only include the activities that were new. This was such a shame as at home we'd been advised to use them as a timetable by the local branch of the National Autistic Society, and it confused my child to use them differently.  We stopped using them not long after.

It was also a shame that the discussions about making it clear to my child when staff changes were happening (as advised by the NAS, whose print out I took in to show you) were (as you said) simply impossible.  I mean keeping track of 3 full time member's of staff and 2 part time must be difficult, I see that.

I do wonder if you ever had answers to the questions in the home/school book I started? It's SUCH a shame you lost it.  I completely understand you couldn't read out the social story to my child to help with home time - again not enough staff. Although apparently too many to note their comings and goings.  How do you live with the dichotomy?

I get you were surprised when my child didn't return for the final term but what with you not being able to change her nappies, read her social story  and the three hour meltdowns she'd have she when came home (often wearing the same soiled nappy that you couldn't spot) - well I simply didn't have the energy.

I admit my email expressing my concerns about your ability to safeguard my child during school years was quite strong and angry - I'm sorry about that.  I should have kept my temper.  I didn't expect you to reply saying you were withdrawing my child name from your school rote (the pre school was a feeder to the school) - I think that counts as discrimination?  But discrimination is such a nasty word isn't it?

Is that why it's easier for you say "Oh Mrs X got ever so angry, but then she never accepted her child was autistic."

I repeat - is discrimination such a nasty word it's easier to blame the parent for not understanding?  Which is sad, really sad. How much MORE would you need to convince you I was trying to work with you. Why - because you had my daughter and she is more precious to me, than I am, and I get that tolerance and understanding, breeds tolerance and understanding. I'm a Buddhist also, and every night I would mediate, trying to shine love on the situation so I could deal with it calmly, I failed and I'm sorry.  But I'm also human.

 It is hard when you suspect your child is different, it is hard when you are trying to open dialogues before your child is diagnosed, and you want your child's needs listened too.  That makes parents sad and angry.  It's also a dialogue you will have had many times with many other parent's who also appear "not" to understand - so please make the dialogue easier for us by listening. Often we do know our child is autistic before diagnosis day, it's just difficult to start that dialogue with you.  Especially if you're not listening.  Please listen.

I knew my child was autistic, I tried and failed to share that with her pre school and 2 years on I am blamed for not accepting she is autistic.  I wish I knew how to build a better dialogue so other parents and teachers don't have to have the same pointless battle whilst the child looses out on an education and suffers instead.  Four weeks after I took my child out of her pre school she turned round and said to me "I so happy".  I'd forgotten when she'd last said that, it been so long.

This is based on what happened to my family and the real sadness is that it happens all over.  Please share if you wish, so people in this situation on both sides (parents and teachers) can find a better way of building that pre diagnosis dialogue.  Our kids are worth it.