Swimming with no meltdowns!

Hi everylittlehelps here!!

For a few weeks now I have wanted to go swimming but my anxieties have always got in the way and time after time it's been cancelled

I decided if I was going to swim then I would plan it and plan it well.

First I had to plan a page on proloquo2go so I could communicate while I swam avoiding any frustration or meltdowns from not being able to say or express what I wanted. Normally I would have pre written anything I wanted to say on the app in each button making it so it was simple, avoided huge anxiety and I would just have to point to 1 button. However I decided to be brave, I decided I would use the intermediate vocal for the first time!!! Which meant 2 new things in one day - swimming and vocab where I would have to point to several buttons to construct a sentence.

Seeing as I was swimming having my iPad wasn't obviously possible so I got it printed and laminated so that I could stick it to a float and take it in the water with me! Great idea given to me by bouncypony!

I coped with the face I wouldn't have twinkle (comfort rabbit) or my comfort blanket - both things that go with me everywhere! What helped that whole situation was that I could communicate avoiding any frustration! I constructed several long sentences with no help from my carer! I said what I wanted to do, where I wanted to go, what was wrong all of which were things that wouldn't be possible without proloquo2go.

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!!

Home-School Story Sharing with P2Go

I love the idea of school and home sharing pictures and stories of what the child has been doing via P2Go.  It makes communication so real and meaningful.  I suspect that a lot of children with autism and/or learning disabilities would rather read stories about themselves: they can connect the pictures to concrete events, people and places they remember.  It's also great for inclusion: my son is in a school where there are also children without disabilities, and they have no way to know that he's actually a little boy who does interesting things at the weekend and during holidays unless he has a way to tell them!

So I was really pleased when his teacher suggested a 'news'-type folder for him to share in this way.  Yesterday I made a 'weekend' folder for him to share news.  I created a huge 1x2 grid so it looks a bit like an open storybook with two pages.  I then wrote some very simple sentences about what he did that weekend and added photos.  It was well received and school enjoyed helping him to share it - I can see from his user history that he did!  As I replace it each week I'm going to keep a kind of 'archive' of old stories too because I'm sure he will enjoy revisiting them.

His school are keen to try and make this a two-way process by sending home a little story of his week at school for me to read at the weekend with him - we're going to meet to plan this soon.  Fingers crossed ....

Keeping the set up appropriate for the environment. One size doesn't fit all.....

Bluebell has selective mutism as well as autism. The selective mutism causes extreme anxiety, it's not through choice, it's huge and stops her doing so much. After our slt appointment, the slt said bluebell could use the advanced core set up. Yes, no problem.......at home........but take her out of our environment and she NEEDS basic, complete basic. We have decided to work on asking for a hot chocolate in our regular tea rooms every week. (Poor me eh!!) I'm pleased to say she did it.....we've been twice now, and today she was far less anxious than last time. 

As you can see this set up is extremely easy. It needs to be to help with Bluebells anxiety. Bluebell didn't want to press the 'speak' box, but that's fine, she turned the iPhone around so staff could read the sentence. 

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!!!! 

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