Singing for your Supper

Friday 24th February.
Heard  your voice again yesterday. It was so good. So good. It was a lovely warm afternoon and we had a lovely time having lunch outside and then your brother came home and you were both jumping on the trampoline. You used to sing on the trampoline and this seemed to trigger something in you. You began to make noises. You'd been using your voice for a couple of days - screaming and 'singing' rather tunelessly but using it all the same as if you were unsure that it still worked and surprised to find that it did. You did this on the trampoline and slowly but surely you were singing. Proper words. Your brother's face when he came into the kitchen to see me - 'Mummy - have you heard Paisley?'. He was overjoyed.
By the time Daddy came home at 7.30  two and a half hours later though, you were back to whispering and this morning when I waved you off in Pre School you were silent again.
You were so excited to have your voice back. It was your 'best bit - finding your voice'. Again, it had been hiding in the wardrobe. Jude had been looking after it for you. Just like your book.
Got to pick myself up even though I'm a little crushed but we've got to carry on.
Things to mention -

• You seem to have regressed with going to the toilet. One of the symptoms of Progressive Mutism is a fear of going to the toilet at school etc., but you need me to go with you at home too now. I wonder whether this is a fear of coming down the stairs after your fall which preceded all this. Maybe this is indeed traumatic mutism caused by the fall?
• Part of me wonders whether I'm making things worse because obviously I'm interpreting your sign language for people so in effect I'm speaking for you. Is this making it worse? The books all say that the expectation of speaking is something that I should take away so I can't put you under any pressure to talk but somehow it seems that I'm indulging you..
• You're a happy and adorable child and you do seem to be accepting no better these days without the tantrums that you've developed recently.

Anyway, the fight is still ongoing - and as yet I've still not heard anything from the Paediatrician.

Then and Now....

So, now we're in September 2012, I wanted to give an update on how Paisley's doing.
Her non speaking lasted 35 days and has only come back since March a couple of times.
She's just started school, she's continuing to go to ballet every week, she's started going to tap dancing..and she's still talking! Yeay!
I can still count the number of people that she will speak to of her own accord on one hand but she's making significant progress.
She's still never spoken to my brother, her uncle but she has spoken to next door a couple of times. It's not perfect but it's better than it was.
Starting school was worrying - she'd begun to speak again at Pre School so I was hopeful but thought the change in teachers might start it all off again.
However, she's spoken continually since she started.
I can't just leave her with any child minder or anything as she won't speak to just anyone.
We still do the 'it's normal to be shy but it's good to be brave' thing and this seems to calm her. Taking the pressure off her to speak definitely has been the best way to go.
She's in a ballet show in November and I have no idea whether she'll make it on stage but I'm hopeful.
We take each day as it comes and don't rule out it ever coming back.

I hope this blog helps anyone in the same situation as it was so scary and there's so little known about the condition. I'd rather have Selective Mutism which is what she seems to have now than Progressive Mutism if there's a choice, as the thought that she wouldn't speak to me was terribly hard.
Doctors don't seem to be much assistance in my experience so it was down to me and I've done the best I could to heighten information and knowledge about the condition, as there was precious little for me.
Good luck. It will sort itself out but it's a hard slog...xxx

Progressive Mutism

Day 26. Now I sound like the bloke from Big Brother. So - Progressive Mutism is what your condition is called and there's next to no information about it. If Selective Mutism is rare then Progressive Mutism is extremely rare. It's not mentioned in any books or anywhere on the internet apart from a couple of lines that says it's an extreme version of Selective. Your daddy found a lady's blog that told how her daughter hadn't spoken for 7 days and one other blog after that. And then there was nothing. This is why I'm determined to carry this blog on. I feel a responsibility for anyone one day searching the net vainly for information. I want to continue with any progress you make and the outcome. I hope that it's months old and not years. However, as it's already almost plural months I'm resigned for it being months.
Today is Tuesday. Pancake Day. On Friday just gone you began whispering. On Saturday you were still whispering. On Sunday the whisper was hiding and we were back to silence. Yesterday the whisper was back and today you were whispering this morning and by the afternoon it was silence again. A rollercoaster but I'm learning to roll with the punches. I'd give anything for you to have Selective Mutism and talk to us at home but a the moment it's not to be for whatever reason. This morning before the whisper disappeared you said 'mummy I love you'. I haven't heard you say mummy for 20 odd days, let alone that you love me. I had tears in my eyes. I missed that so much. I love you so much. How long will it be before I hear it again? Albeit in a whisper. Whisper is better than the silence. It isn't golden
Will you ever get past the whisper and speak normally? Sometimes it seems such a dream. Still haven't heard anything from the Doctors or the Paediatrician that I'm being referred to. I'm not sure how much good it will do anyway. Just more stress and anxiety for you.
So - these are things I've tried and whether they've worked or not - just because they haven't worked for you doesn't meant that they won't work for someone else..
Things I've Tried

• I bought a doll that looked just like you for you to 'talk' through. You don't do this but you do take her to ballet with you to watch you (mums aren't allowed in) and this seems to help you and gives you confidence.
• Treating you as we always have done. We talk to you as we always have done, explaining things, talking things through even though we don't get much back.
• I've taught you some basic sign language as I'm determined that you manners will not slide so you've learnt thank you, please, sorry - you made your own sign language up but this is just to help.
• I've written a childrens' book'My Sister's Voice Is Hiding In My Wardrobe' a book about Progressive Mutism - Lulu.com to enable children to recognise themselves and know there's others out there, for sibling, Pre School. I'm very pleased with this. It's helped enormously.
• I've bought a book - Helping your child with Selective Mutism by Angela E McHolm etc. Pleased with this although not quite specific to your condition but some of it is useful and relevant.
• Normalising things. Telling her that it's normal to feel shy and nervous. This seems to help.
• Giving her a whistle so that she can get my attention if she's in bed and has a bad dream etc/she also claps to get our attention.
• Along with this condition some children get very oppositional behaviour and become stubborn, defiant with severe tantrums. We have to try not to give in to this behaviour just because we want to make life easier for the child.
• The invention of 'Croc and Ali' - hands that become puppets to give them confidence (your hands go everywhere with you so therefore Croc and Ali do). Attempting to give confidence and strength even when anxious. Not sure how successful this one is yet. Still ongoing.
• Giving confidence, telling you how clever, brave, strong, beautiful you are. Ongoing.
• Writing everything down and following the book aforementioned's advice with a journal.

That's it so far......

Why?

And that's how you've been for your three and a half years. True, you've always been shy. When I think back to occasions in the past I can see a recurring pattern - my 40th birthday party when I mistakenly thought you would love it - the dancing that you do in the privacy of our living room was I though testament to the fact that you love to dance, show off, be the life and soul. Like mother like daughter. Like brother.  You were sullen though and clingy. You didn't enjoy it at all. And other occasions have followed the same pattern but I just thought it was you. On Face book I questioned on my status which Paisley it would be that I took to ballet. Your first class. Would it be the extrovert version of my daughter or would it be the introvert version of my daughter? I believe that it was this side of you that has manifested itself so fundamentally in you. I didn't take any notice of those signs. The day before that new ballet class you fell down the stairs. From the top to the bottom. You seemed fine after the initial bruise had gone down but when you were extremely sick two days later I decided to take you to the doctor's. Just to be sure. We then went to A&E and saw four or more doctors/nurses. They were even talking about keeping you in. Finally, we were home. Two days later and you stopped speaking. That was three weeks ago and there's only been a day of speaking in between. Was it all the people that you had to see, expecting you to respond to them? Was it ballet? Was it the pre school that you began in September? I remember in your nativity admonishing  you that you hadn't joined in the singing when you had known all the words at home. Is it a combination of all of these things that have just overwhelmed your brain causing it to shut your voice down to protect you?
Of course, the biggest problem is that I don't know why. Perhaps you don't but with you only being 3 and a half and not talking the speculation is what drives us mad. Daddy and I speak all the time about the whys and the wherefores. To no real avail.
And I guess the worst thing is that you've acquired the most uncommon version of the disorder. Most children just don't speak at school - something which I can kind of understand - but your voice had decided to hide from all of us. Even your closest family. Even from me. I'm the one that you should feel the most comfortable with - the one who will protect you from everything scary and anxiety ridden. And yet I obviously haven't. And I feel such a failure as a mummy.
Even your brother has heard you whisper to him when you both stayed in the same room together a couple of nights ago. Part of me is pleased that you are able to share some things with him and part of me wonders why not me.
It's been 14 days tomorrow without any speaking, 21 days with just one and a half days of speaking. You're mouthing words today which I feel is a good sign but I know that even if your voice comes back it may disappear again. It's amazing the impact that it has on all of our lives but at least it has brought the writing side out of me again. I'd always written things down when struggling with emotions and I suppose that has lessened as time went on. I've just finished my book which I will self publish tonight to help you and others like you. Maybe some good will come out of this.

The Silent Child

It's been 7 hours and 12 days since you took your voice away......cue picture of me with shaven head and beautiful eyes with a solitary tear. I can't do the shaven head (only Sinead could really pull that look off and to be fair you wont have a clue in your 3 and half year life who she is), I can't do the beautiful eyes - you got yours thankfully from your dad and I can't do the solitary tear. Many, many tears yes. Just not solitary.

I remember when I found out I was having a little girl. So many dreams and aspirations. So much thought had gone into what you would look like, sound like, be. Don't get me wrong - the joy in having your brother was indescribable and the joy that he'd brought in his wake with his confidence, his joie de vivre and non stop talking was mind blowing, but there was something about having a little girl - a little Mini Me I suppose that was different. And special. Not more special than your brother. Different special.
Daddy and I would look at little girls on the beach on our pre children holidays, choosing ones that would look like 'Paisley'. Daddy still hadn't said he'd let me call a little girl that if we ever had one but he did indulge me in our game of finding a 'Paisley'. Invariably she'd have long dark hair, big brown eyes, tanned skin and be beautiful. She'd be gregarious, confident, funny, clever and musical. How lucky were we then that this is exactly how you turned out. From the moment you were born we all loved you. Even your big brother. Our little princess. Our clever funny girl. Our Little Miss Sunshine.