You want it you got to ask for it!

Been out with my carer today and we went on a canal boat ride it was good fun! There was people sitting near us which is a situation I dread and I didn't take my iPad out with me today so I was literally speechless..... That is until I got my iPhone instead and opened up proloquo2go!

As my carer says "If you want it you have to ask for it" she isn't a mind reader! Though I wish she was sometimes! I asked for my drink and I got it there and then perfect! I love the feeling it gives me when I get something I want but don't have the words to say so my device at my side means I can get nearly anything I request or need I just have to use my words and talk to Amy! 

Still enjoying my drink now well earnt I would say! My carer knows I'll do most things for this drink which can be used to carers advantage and instead of simply asking me and prompting me do I want it for me to just take it they make me ASK for my drink! Something so simple and always seems to hard to me but makes it better for me in the long term :) 

Coffee, cake and cars

Today I took my son out to Costa for cake (and sneakily, for some communication practice).  Our local Costa is perfect for this: it has a small enclosed outdoor seating area which you can't easily escape from with a railing which overlooks a busy road.  This means in addition to ordering coffee and cake we could use his vehicle folder to comment on what was passing by!

I was hoping to get him to ask for something at the counter but that proved too difficult (he was massively excited by all the cakes available), so I got him chocolate brownie and a drink (which I know he likes).  When we sat down I got him to ask for drink or cake.  He couldn't decide whether it was 'chocolate' or cake' which was a good teaching opportunity because we put the two together to make 'chocolate cake'.  I realised I hadn't added a 'yummy' and 'yucky' button to his food folder (his sister has those words in her food folder) and they would have been useful so I will fix that for next time!

Then we used his vehicles folder to comment on the vehicles going by.  We saw cars, vans, buses, motorbikes, taxis, and .... the highlight of the day .... an ambulance!   He showed an interest in me modelling and repeated some of the words but didn't do much pressing himself.  However if we go to that cafe and start doing this regularly I think there's a good chance he will.

Progress ....

Apologies for no posts in a while from me.  I have been busy fighting on various fronts, including getting my daughter a new EHCP (in the UK, a legal statement of special needs and the provision that is needed as a result of those needs) in order to get her speech-generating device written into her provision.  Slow progress, but I am getting there!  We now have a Speech & Language Therapist who is sympathetic to AAC and has written a report for the EHCP that she needs to have a regular structured programme to help her make progress on P2Go so that is good.

Another positive thing is that I have signed up for a course on modelling/ Aided Language Input for parents of children 2-11 who use AAC.  Looking forward to getting started.  Here is the advert in case anyone is interested.

Finally, I'm pleased (and surprised) to say that despite very poor modelling from me recently (been distracted due to the EHCP issue) my daughter has spontaneously used four brand new buttons on her device that she hasn't used before.  They are:

Book:  she visited her granny's house and remembered there was a book there that she really liked and wanted to see again so she said 'I want book' (she doesn't normally ask for books because they are freely available on her bookshelf at home).  Unfortunately she's not yet able to specify which book it was she wanted but we worked it out!

Finished: she finished her dinner and said 'finished yoghurt' (she likes a yoghurt after dinner). 'Finished' is a really good one because she has a tendency to pick up food and throw it when she's had enough so if she can start telling us this way that will be an improvement!

Please: she doesn't normally bother with 'please' or 'thank-you' but a few days ago she said 'I want chocolate'.  I said 'chocolate is finished' and she went back to her iPad and pressed 'please'.  I was so impressed she ended up getting some (as she knew she would!!) 

Night-night: her Daddy said 'it's time for bed' and she went to the iPad and pressed 'night-night'.  I was really pleased about this one because it wasn't requesting, it was just nice social communication.

So all this progress is motivating me to up my game with the modelling!  Fingers crossed the course above will kick-start me into action again.  :)

Using morning routine to model

My Lad has been home from college so I have modelled each morning

He is now responding to the prompts in the sentence bar fetching his own clothes and getting dressed and also asking about brush teeth himself. He is accepting a shave which is very difficult for him using his p2go 

I need to get college to continue with this. 

When your carer can't do something u can!

My carer is doing a challenge this month and can't eat meat so couldn't have bacon for breakfast like she wanted when we was at the hotel yesterday..... She has been busy using my device to model and encourage me to talk again...

It worked!

I was really interested in what Amy had to say and she was making me laugh because she was slow finding what she wanted to say! I took great pleasure in being able to tell her I had eaten bacon and it tasted good!! 

Might be only one thing I said but I said it unprompted and it's one more thing I said than the day before! 

We're moving forward......

Proud of myself today I managed to say 6 things using my iPad which compared to the zero it has been is a huge step in the right direction! I've been having a pinch attack most times after communicating but I'm getting better and calming down faster with just a few times of catching my breath and some reassurance and I'm ok again until the next time......

This is what I said to my carer unprompted!!!! When we started this Wednesday I couldn't even tolerate the iPad to be turned on so I'm very proud of this!

It doesn't all have to be serious here is me and my carer playing around on proloquo2gowith a hip hop voice getting him to say things it was making me laugh yes it was still tough but it's getting better and I'm working through the anxiety I'm getting and trying to forget about the chest pains and funny sensations it is causing in my body I need to do this and I am doing it!! 

We're using a reward system to help me get talking again I'm well on my way to getting breakfast out next week! Wish me luck!!

Through the good and bad times....

Hi everyone bouncy pony here it's been a really really tough day and when I say tough I mean a 2 hour meltdown..... All because my carer made me take my iPad out with me to be able to speak when out...... Now what u may not understand and the parts to me that you don't see is the anxious , agitated, stressed, scared feeling I get around needing to communicate.... I have refused to take my device out with me slowly over the last few weeks where I'm now at the point where because of my selective mutism and the anxieties surrounding communication how ever that may be I will not take my iPad out of my house and most definitely won't turn it on!!! My carer knows how much it helps me to talk and my behaviour has got worse and worse without me communicating and I'm really struggling to cope so she knew she had to start somewhere and that was today the deal was I took my iPad out with me I didn't have to use it but I had to take it out.... Within 10 minutes of being out she had to pullover in the car and I had one of my worst meltdowns in a long time.... I wanted you all to see its not all rosy and cosy in my world all of the time in fact a lot of the time I am on a daily battle just to ask for a drink! After I calmed down I managed to relax a bit more and got used to wearing my device again and at the end of the day I managed to have it turned on for 1 hour.... This caused huge anxieties and near enough a panic attack because I wanted to turn it off so it was a blank screen again.... But my carer talked to me and we worked through the feelings I had and the fear I felt until it wasn't so scary after all. We listened to my favourite music in the car and by the time I got home I was so proud of myself for doing it! While it may seem like nothing to you it is HUGE to me this is the first step into talking again which will be gradual but slowly and surely I'll be back and happier than I am now..... It's never to late to learn to talk and it's not a smooth path when there is autism AND selective mutism involved but those who love and care for you will need to buckle there seat belts and hold on the ride!! It's sure to be a bumpy one! I hope u will join me on my road to talking again.... 

A day In the woods was needed for peace and quiet and no talking needed!!

The not so glamorous side of autism... When I managed to bite a chunk of my hand while my carer was looking for my chewy I can bite when I'm stressed...... This is the side people don't share but this is a side I think you all need to see so you know I'm a normal human being with autism and a lot of difficulties despite I learnt to speak through my device unless it's consistent it soon becomes a HUGE fear! 

Speak to u again soon! Bouncy pony 

Repetitive, maybe, worthwhile, definitely, age appropriate....oh yes 😀

Had some friends over today. This meant we had 4 children of differing special needs all together. I had put an art table up, we also had some music to dance to on....this was okay, but bluebell spent the time looking out of the window, it was quite obviously far too overwhelming for her.

I decided to redirect her to her iPad, she came and sat at the table with us, and predictably, pressed the same old, same old, 'I want boyfriend ******'. This caused much hilarity with her friends, this then led to writing boys names down, and a general laugh and chat about boys. Typical teenage behaviour if you ask me 😉

When talking stops for a while.....

You haven't heard from me for a while I'm having a really tough time with my health and also had to have my best friend my beloved golden Labrador dog put to sleep yesterday..... That hurt so much she was my everything. 

I've not been talking all week and refusing to take my iPad out but with a lot of encouraging I took it out today and managed to say 4 things it may not seem a lot but for someone with selective mutism who closes up at any sign of stress that is 4 more than I said Thursday...... I'm going to try my best to get back to talking I do miss it in some ways..... What is hardest for me is people telling me to talk and not bottle my feelings up and self injure but how do I do that when talking has never come naturally to me in 25 years..... How can I get someone else to understand how I feel if I don't understand myself? Times are hard but I'm trying my best! 

This is my beautiful dog Millie 

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