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!!!! 

Meeting with my best friend for the first time!!

Yesterday I met up with my best friend for the first time and it was AMAZING!!! We didn't stop laughing and smiling all day! (Communication is so much more than just verbally speaking)

We both drove about an hour and a half to meet and we was so excited and nervous!! I started off by saying hello to both my best friend and her carer on my device then off we went on ur first animal hunt!! 

We each took it in turns talking off my device to choose where to go next it was great fun!! I throughly enjoyed going out with another wheelchair user it was like a race riding next to each other I was laughing and bouncing so much I didn't stop making my happy noises! 

By the afternoon it had gone cold and with my EDS I was in a lot of pain but I managed to tell my carer that and suggested my friend could have a brownie that she had her eyes on at dinner time that idea went down very well!! First time ive ever told my carer I'm cold and not blown or got grumpy because of it!

Me and my best friend even managed a independent conversation while our carers went to the counter to get us a drink I really enjoyed that and felt really confident with proloquo2go at my side! I would never have dreamed that it could be such a success I couldn't have done it without my device that's for sure but with it anything seems possible! 

Overall an amazing day filled with so much fun I was exhausted by the end because I had just met the loveliest person and I felt so lucky she is my friend! She accepted me totally and our teddies Po and Twinkle even got a kiss! I was so happy to be there and be around her I hope to have loads more meet ups! 

 

Bye for now from a very happy bouncy pony!! 

We're off to a pantomime!

Been to a relaxed performance of Aladdin today with my carer it was great apart from the 3D bit that wasn't so relaxing!! My carer got headbutt in the stomach from me and I was in tears scared to death I never will like 3D!!!

The staff was ever so lovely and lead us to the sensory room when I was calming down but still upset it really helped and loved my new toys they let me keep my yellow ring and my colourful ball! 

So helpful and loved how nobody judged me my screaming and noises didn't matter at all nobody even noticed I loved that it's not often people accept me that way as I'm 25 and quite obviously autistic people are very fast to judge my behaviour as wrong but never understand there is always a good reason behind it whether I'm upset scared or just excited!! If you've never been to a relaxed performance would thoroughly recommend! 

Although on this occasion I wasn't able to communicate I just blew this is very rare now I am getting a lot better at talking before I blow today was just too much and words didn't even enter my mind nor did trying to talk instead I just wanted to scream and pull the boy in front of me hair!! Though I managed not to I'm happy to say! 

A bouncy day for bouncy pony!

Now I WANT to talk anything is possible!

Wow just going through my folders and found this from last June 2015 when I visited peppa pig world with my carer and wow what a difference in the amount of buttons I was able to cope with then and also that I would only have buttons needed I would never have put big sentences together or just commented on things like I do now!

As you can see it was a very basic set up and one which I then found hard to deal with but look at me now less than a year later and what I am managing!!.........

Not only is there more buttons because I am happy to talk more there smaller and there is more folders I accept now to try and avoid meltdowns where possible! I'm now 25 and learning to be able to ask for things instead of just getting upset because I don't like waiting within a few seconds now I can say just that to my carer and she can help me rather than her trying to guess what is wrong! I'm so proud if I can achieve this in 7 months imagine what I'll be like a year from now! 

Onwards and upwards 

Bouncy PONY! 

A very explosive morning........ I don't like waiting!!

Today was a real challenge for me because there was loads of traffic as there had been an accident on my carers way to work so she was late....... I find this super hard to deal with especially as on my timetable it said Amy pick up so that is all I would do for the hour I waited was stare out of the kitchen window which made things so much worse but that was on my plan!! Amy has now told me to make a waiting folder so if for any reason I need to wait for things any other time I have a folder I can go to......

This was how talking to mom went while I was waiting but this was huge for me that I was able to talk to mom and didn't completely lose it I took great pleasure in being able to press the sentence bar and repeat 10 times I don't like waiting!!! I only screamed and lay on the floor at home and managed to communicate my feelings but after waiting so long when I got in Amy's car and we was driving I just couldn't contain the explosion any more 

I did tell Amy I felt frustrated then she pulled the car over and the rest was too explosive to talk it just involved biting myself and humming my unhappy noise

I realised though when I wanted comforting I didn't have the button to ask so instead managed to find like hug and Amy understood me phew what a morning!!

Let her choose what SHE wants to talk about........it's not all about choices....

This post speaks for itself. Sometimes you've just got to be  a teen and talk teen stuff, cause, well, because SHE CAN 😊

Typical teen, talking boys, boys, boys.....

She then found the keyboard and asked how to spell words, well, boys names to be fair.....

Don't forget, let them explore, have a voice and talk about what THEY want to talk about. 

Bye for now...

A girls guide to shopping.... The autistic way!

Been shopping today with my carer and took full use of my device talking to the people in the phone shop about my new phone I'm getting soon. Then we went for dinner where I told the man what I wanted to eat and drink he was very good at listening and I didn't have to repeat it which was really good!

Nothing better than some pizza! I'm sure it tastes even better when u ask for it yourself! ;) 

Then off we went shopping like everyone else takes for granted being able to just go wherever you feel like. For me I need it more structured and need a visual choice of where I can choose or else I can never decide! I did realise today though I'm missing a button on my device to tell my carer what it is I want to buy so have now added that extra! 

We put the shops in an order and went to them as I said which meant less stress and no meltdowns because I was in charge where we went and I had a say too in things which always makes me feel good when I am heard and listened to! 

This is my shops page ........ Since I added the new I want to buy folder.......

Oh and here is my new things gotta love a bargain! Bye for now 

A successful day at the space centre!

I went to the space centre today with my carer and happy to say it was a big success! My planning really helped to make it possible for me to have choices in what we looked at and where we went which is really important for me as I'm a wheelchair user I can't just walk where I want to go.....

I was able to talk to my carer and tell her what I would like to do tomorrow while showing her my new folders which by the way she loves! Also I was starting to get agitated after waiting for the show to start we had only waited a couple of minutes but it was a couple of minutes too much for me! I really struggle with waiting as I can't see an end to it I began to throw my head backwards but managed to stop myself from doing anything else I told my carer I didn't like the waiting and was soon out of the situation. Meltdown avoided CHECK! 

After the show it became really crowded and I couldn't cope so I quickly told my carer I needed some quiet time before closing my eyes to avoid sensory overload! After I had calmed down we was back on track choosing where to go it was good fun being in charge! 

To my surprise my guess who page came into use upstairs with a game so I was able to play that as well with ease even when someone came over to try and take my turn away from me my carer told them we was playing and I continued to be able to talk to her when usually I would have immediately closed down and gone mute in that situation but I didn't I was so proud! 

Overall a GREAT day not been poorly avoided meltdowns I would take that as a very successful day!! 

We're off to the moon!!

Ok so I'm not off to the moon but I am off to the Space centre tomorrow with my carer!

I've been before but never had a very successful time there because I didn't have anything set up knowing what my choices was when I was there and also being able to just learn and identify things! 

This is what I have come up with for my trip...... As you can see I like to keep things spaced out so as not to overload me and I can communicate fast and when needed! 

 

I've even managed to make a folder for me to be able to talk about the topic of space to try and identify things when I am there. Well that's the plan anyway will see if it goes to plan! Could be a learning day as well! 

Bye for now Bouncy pony!! 

Christmas miracle

Hi, I'm new with all this, I just got the app proloquo2go just a handful of months ago for myself. I have never really had a communication app before. After lots of help from a friend who is very familiar with the app I finally had to attempt to set up a page for the very first time with very little guidance. I did it!!! Well I did 90% of it myself! After I had added what I thought I showed my friend who suggested a couple more things making my Christmas page perfect.

With my app as I'm not used to using it and I have severe anxiety it has meant I have hardly used the app even with just family however Christmas Day I used it lots (shown below)! It meant less frustration for me and the whole family! I am so glad I got the app!

That's all from me for now! Hope you had a lovely Christmas and happy new year!

Having a voice in the most magical place in the world

We have had a magical trip this Christmas to Disneyland Paris. Preparation enabled choice and modelling.I could also quickly add things as needed.

 He was so pleased in Stitch Live that he could use his colours folder and "shout out" with the other children the colours to enable Stitch to escape.

Let's talk about my Christmas presents.....

Something most take for granted..... Being able to talk about what you had nice for Christmas. This seemed like something I would never be able to do but I managed to do it for the first time today!!! I met up with some new friends and was really excited to show them what I had got for Christmas and introducing them to my sister too and I thought what better way than to show them photos!!  But having just a photo wouldn't work for me as I had no way then of explaining what was inside the photo when in my head I have so much to say! So I made an album for them and away I went!

I've made a few folders each with things inside I want to show people it always is easier to talk to people when I am motivated and excited!! 

What better way to start a conversation than showing someone my paw patrol collection!

As you can see I kept it short and simple and showed my favorite things which kept me interested and it really helped to break the ice as you would say to help me start to talk to my new friends it was a 100% success!! 

Learning to expand sentences using adapted home made book

Blueberry had a slt session this week. We discussed the words that she is missing out and how to help her expand her sentences. Me, being me, thought I'd set up this activity. Blueberry did find it hard to stay on task and remember what the question was, so lots of prompts were needed. We will persevere and keep trying though.

I made a Christmas book template.

Then to use the connective and describing words I made a 'little words' pop up. This kept it simple for Blueberry.

Happy Christmas 🎄🎄