Adapting to the environments I'm in to avoid meltdowns...

Hey all I'm having a tough time lately with health and my medical conditions but we are monitoring and treating best we can!!

At times like this communication seems impossible but I'm trying my absolute best and I am transferring over to advanced vocab! 

Even though I'm doing so well and this is my current home page I still go back to basic when needed....

I'm off to Cadbury world tomorrow and have edited my page so that I can easily tell my carer what I need and if I am feeling poorly 

As you can see it's very basic but will be enough for this particular place which can be overwhelming for me if it's busy and I need access to speech fast there isn't time to be searching for words so basic it is!

I can still say what chocolate I want to eat though! 

Learning to speak AAC

If we expect our young person to use AAC we need to use it as well. My lad is starting to observe modelling more and we can almost have a conversation using his device.

We chatted about printing the other day and the need for more ink. 

P2Go on the Go: the iPod Touch

Recently I have felt that in addition to the iPad mini we need a more portable AAC solution: my daughter isn't keen on wearing iPad when out and about (and I've chosen not to fight that battle at present because I want communication and P2Go to remain positive things).  Also she's doing horse riding now and because she doesn't have a means of communicating while she's on the horse she will throw herself off the horse when she's bored and wants to finish!!

For this reason I found a great bargain on eBay: an iPod Touch (3rd gen) for £44.99.  I installed P2Go and set up a very simple 3x3 grid with some of the things I think she would most frequently need to say when out and about - it covers the main physical and sensory issues (hunger, thirst, noise, toileting, want to go home, music to reduce stress).  I've also included an iPad button so she has a way to signal if she wants access to her full vocabulary.  We could expand  in time (scrolling down to a second 3x3 grid for instance) but I want to keep it simple for now. 

I then bought a cheap protective case for it and also a waterproof pouch with a neck strap.  I wasn't particularly looking for waterproof solution but liked how this was a quick and easy way to make it wearable.

She has already used it and seems keen.    We haven't tried wearing it yet but I plan to add her favourite music to it so it can double up as MP3 player which I hope will encourage her to wear.  Fingers crossed ...

Day one - learning to navigate through folders

The slt has given us a programme to follow, Bluebell is much more focused in the morning, so because it's half term here, we made a start today.

Well, A-maze-ing!!!!!!! She was a superstar, using her own intuition as to where words could be. 

Today's words to find were - first name, brother, dad, mum, family names, names of closest friends, bus, taxi, car, wheelchair, home, school, book, music, story, swing, dvd, I, sad, happy, bad, good, OK, please, thankyou, not, am, go, is, like, want......

I'm so proud of her, not only that, we went to costa today, she found all the words for 'I want hot chocolate please', then when the waitress asked her questions she found the words 'little', 'no' and 'yes'. She was anxious, yes, but she managed to do it, she was visibly pleased, and relieved, when she got her hot chocolate. 

Granny was so proud of her that she had a go on proloquo2go, and found the words ' I am very proud of you' for her very special granddaughter.

Dare I really presume competence with advanced core!!

Okay, this might be a long post ....

Bluebell has selective mutism, autism and a severe learning disability. Now, the sm is honestly the most heartbreaking thing, she has a wicked sense of humour, sings and chats all day long at home, however outside this house her mouth just zips up, nada, nothing, as they say. 

I've been plodding along trying to find the right set up on p2go for a while. Yesterday our slt visited, she immediately saw bluebells potential and said put her on advanced core!

 Oh my!!!! Really?!!!!!

 I understand and know she has the vocabulary, but believe me when I say that anxiety takes over and makes her freeze when we go out. Having such an advanced set up scares ME!!! But this isn't about ME, it's about BLUEBELL. 

After chatting to my friends here I've decided to go for it. 

So, please join us on our journey with advanced core 7x11......

I turned into a butterfly.... No longer the 'quiet' one!

Before I had Proloquo 2 go and before I had carers willing to let me use it this was my life...... A shy girl afraid of the world to scared to let anybody in to scared to let any sound out...... 

I wrote a poem at one of the worst times this is how it goes......

Silence

Imagine living in a world of silence 

Where nobody knows your there 

When your upset and want a hug 

But all you can do is shed a silent tear 

I want to talk to people but the words just won't come out 

Only time u will hear a sound is when nobody is about 

My voice is paralyzed and my throat is closed up

I want to be able to chat away 

I want to let you hear me so badly 

If only u knew the pain I go through just to make a sound 

Then maybe just maybe u would understand 

How happy I would be if one day my voice had been found

I don't have to imagine it because this is real this is me

If you find a key 

Please set me free

Bouncy Pony 12.2.14

LOOK AT ME NOW!!!

I have a voice I can say what ever I want to I can choose to do things in any environment would u believe this was the first time I met a friend and we was talking suddenly I decided I WANTED TO GO ICE SKATING and I was able to tell my carer that easily!! No frustration , No meltdowns just excitement!!!! 

 

And look my carer took me ice skating the following week! 

Proloquo 2 go might not be the voice people expected me to use they might have thought one day my verbal voice would come but after waiting 23 nearly 24 years it was time I accepted and everyone accepted a different way to talk. This is real life , This is autism, This is selective mutism. 

This is ME!  

So much more I want to say...!

Hey there,

The following screen shots basically say it all...!!

Within 5 months I have gone from this -

To this -

Amazing right?! I used to think the first page I did for the farm was all I possibly needed to say but it seems I was wrong! Over the last few months I have had more and more to say. It's great having a voice, something lots of people take for granted but something some of us don't have...that is until we came across p2go. I'm so thankful I found it.

My anxiety about using the app is still very high so I usually communicate out and about via gestures but I know there will be a day when I use the app more and more and will be able to say all these wonderful things. Until that day my app is there ready and waiting till I feel able to use it. I can't wait for that day to come. 

Talk to you again soon!

EveryLittleHelps

Peer interaction for the FIRST time ever!!!!!

My daughter has autism and selective mutism. Anxiety prevents her from communicating in any form. Today her friend from school came for tea. And this is what happened -

I surreptitiously left her iPad near her, saying if she wanted to talk she could use this. Her friend immediately investigated the app.......

Then I couldn't stop them (not that I wanted to!)

43 exchanges in one hour!!!!

Her friend really enjoyed using the app too, she found pages and asked my daughter questions.

Did I mention 43 exchanges?!!!!! 

Here is S. talking to Ellie via Ellies app.

Here is Ellie replying 😊

It was so much fun they carried on at the table too!!

Oh, did I mention 43 exchanges in one hour ;)

I got the food I wanted not what my carer 'thought' I wanted!

Today I went out for dinner with my carer for dinner we went to a pub I've been to before and I had chosen what we wanted at the table and told her before getting to the counter just in case I didn't want to say at the till. 

When we got there the man started speaking and my carer encouraged me to tell him what I wanted so I started..... He then asked did I want.... Sweet potato fries, Chips or jacket potato. I didn't answer straight away so my carer began to answer for me but I suddenly frantically was searching for a button and she asked shall we say what I wanted and I really thought about that but finally found the button and I pressed 'Jacket potato' to her surprise as she was going to answer chips for me because that is what I usually go for!! I totally surprised her and this is why it's so important I have my device there all the time because today I had a voice and I chose what I wanted to eat not what people think I would want! It felt so good!!!!