I'm back......

Help everyone bouncy pony here!! It's been so long since I last blogged apologies for that but things have been very tough and communication was put to a halt and I am now getting back to it and feeling more confident again slowly!

Today I have had a brilliant day at a castle and park and my carer made sure we had a relaxing day with communication involved of course! What better than to get my favourite a Diet Coke from the cafe! And while I was there why not order for my carer too?! Why not indeed so that is exactly what I did..... 

And here u can see me and my carer enjoying our stuff I ASKED FOR! Woo hoo go me! Feeling proud of myself and back on form that if u want something u got to ask a tough but fair lesson my carer has taught me! 

That's all for now but don't u worry I'm back and I'm on it communication is coming in thick and fast!

Bouncy pony! 

The summer holidays, surely a great time to practice our social communication

Been a bit quiet here recently...sorry!!

We have 2 small but significant stories to tell.....

Yesterday we met up with bouncy pony, who asked Ellie some simple yes/no questions using her device....although Ellie needed encouragement she managed to do this...

Today we went out for a drink in our favourite tea rooms, Ellie asked the waitress for a 'little cup' using her device. 

Doesn't sound much does it? 

Believe me, it's huge :) 

Smoothie making the autism way!

Last week I tried making a smoothie at a centre I go to it wasn't without its challenges due to my sensory processing disorder I find loud noises really hard to tolerate and even with my ear defenders on the noise of the machine can be too much!! I did as much as I could to prepare for it

I made a smoothie page with choices of fruit on and also included fruit I don't like so I could say what I didn't want which is something I'm trying to work on instead of making my no noises im trying to verbally tell my carers what I don't want 

This is what I chose in my smoothie oh and kiwi but I pointed to that

Talking whilst making it to add more ingredients to my list! I wanted pineapple too! 

This is me making my smoothie easiest way I found around making it was to press the button in very small burst of noise but it wasn't mixing properly so my carer took over and pressed it continued for a few seconds what seemed hours to me and I hit her because I couldn't tolerate the noise but I really did want to do it! So it was one of them moment she had to take the chance of me hitting out but I wanted to make a smoothie and this was the only way!

It tasted lovely in the end wasn't without challenges I had HUGE sensory overload from it and really got upset but lesson learnt next time I'll go out the room when others are making them so to minimise the amount of time I have to hear it!!

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.

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 ;)

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!!

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!! 

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!

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!! 

Christmas party...... Meltdown avoided!

At my day service today it was our Christmas party which is a high trigger environment for me so my carer put things into place to make it easier for me. Such as having a choice board set up ready for me to choose activities when I was there which really helped me to be able to choose things stress free.

Here is an example of my choice board as you can see there was very few choices there so as not to overload me. 

I made a guess who game page and played with my carer and friend which worked really well for me and my friend we was able to interact and knew what to say to each other it really was lots of fun for us both my carer thought it was a great page!! 

It was a success and when I started to get stressed it was caught fast and my carer acted fast so as to calm things down before they exploded........

I was able to tell my carer I didn't like the waiting for Santa I wanted him now it may have just been a few words but they made a major difference to being calm or being stressed because I was able to be listened to which I really liked here is what I was able to say........

As you can see afterwards I was very happy to talk to Santa and calm was restored......

And all was good again in bouncy pony land!! 

The first time blueberry has communicated with Santa ever!!!!!!

My daughter asked to see Santa this year, which she has been too anxious to do for a few years now. So, being brave I made a very simple Christmas list page. I didn't include any words like 'I want', or 'please' and 'thank you' because she finds those words highly anxiety provoking in situations she's not used to. She did amazingly well, and happily, yes happily, (whoop whoop)  pressed all the buttons to tell Santa what she wanted.

Working through frustration to avoid a meltdown!

Today I went to the safari park and things was going well , I find transitioning to the next activity hard so my carer warned me of the next thing happening a few times. But I was having such a good time I was focused on finding the discovery trails to scratch on my card so I got a present that I forgot the next thing so when my carer mentioned it was dinner time it was too sudden for me and felt like a surprise which I hate and cannot cope with! So I started to get upset and was repeating what my carer was saying so we sat down and I decided to tell my carer what was wrong making me upset!

This is the start of the conversation I had with my carer which I felt she really listened to me and understood what I was saying and didn't just insist I ate my dinner she explained the reasons for having dinner now such as it would make me poorly and cause hypos and we could carry on having fun after dinner. 

 

This is the ending of the conversation when we made a now and next and I talked through what I wanted to do and we spoke about what was next so I knew what was happening after I had eaten. It was important for me to know that even though I was having fun now and didn't want to stop we would carry on having fun after our dinner. I felt very proud of myself and happy afterwards and didn't headbutt my carer as she put pressure on my head to help me stop that feeling which made me so happy I felt like I had really communicated well and importantly too my carer had really listened to me and understood me that is so important to me! 

When anxiety takes over.... The reality of selective mutism

Today wasn't a good day for me from the moment I went out until I got back I only managed to say 5 things.... All of which was to my mom except 1 of them...... Instead I was frozen today and felt like my body was eating itself as I was struck by major anxiety that I haven't experienced for a bit which wasn't fun at all!! Instead of laughing and having fun I was too anxious to make a sound and squeezed my hands all day just waiting till it was time to go home and I could block all the world away..... Today isn't a good day for me but tomorrow should be better. Even us fluent communicators have bad days it's not a simple path to talking..... Here is what I managed to say it might not be a lot but at least I could ask for a drink when I was really thirsty better than nothing!

How rewards help me speak

When I first got my communication device I was so used to not talking we soon realised it was going to take some hard work to get me to 'talk' so my mom and carers worked on something I liked to do...... Going to a cafe at the park and asking for a Diet Coke.  

I did this same thing for quite a while until I was then able to move the Diet Coke to different places like restaurants and supermarkets. Until I became confident and understood that if I did good communication I got something back which I loved ice cold Diet Coke! 

We still use this method now when I have been good and communicated rather than grunted and got frustrated with mom for not understanding I get to have a drink somewhere with a red straw of course! That's an ongoing battle! 

Here is my star chart the idea is I earn a star for every communication effort I make when I get 6 I get a reward can easily be adapted to suit anyone whatever works for you! 

Bye 

Bouncy pony!