Our Toilet Training Journey

Hi All, its been a long time between posts I have noticed and I seem to have gone away from my original intention of using this blog to discuss our communication journey so others might be able to use our experiences to learn too.  However, being a Special Needs Parent, you soon discover everything is just that little bit different from raising a 'normal' child.  Everything in our lives has been a challenge in one way or another, and toilet training has been no different.  We've had great progress that has been setback with surgeries and then illness and finally with us parents just deciding to leave it alone for a bit until other things our son was going through came right first.

Communication = Toileting Triumph

One thing that needed to work in order for toileting to be successful was our sons ability to communicate the need to go.  He seemed to understand he needed to use the potty in the beginning.  We started putting him on the potty when he was 2 years old after advice from a friend who had an autistic grandchild who as a teenager was still not toilet trained.  Back then we never worried about him asking to go to the toilet or even had a communication plan, we just put him on the potty for long periods of time (20 minutes) about 30-60 minutes after he'd had something to eat and drink.  If we got success we made a big fuss about him and celebrated! For awhile we got lots of success and I still sat him on the potty while I went toilet and 'modelled' how it was done.  Then all of a sudden he stopped going on the potty and for a whole month we got no success.  Then one day I decided to try him on the toilet and bingo! he went! It was then I realised all my modelling had given him the idea that was where you went toilet, not on a potty.  So from then onwards he was toileted.  However, our son was getting big, and heavy, but he didn't have good trunk control back then so it was difficult to keep him comfortable on the toilet and safe.  So we opted for morning and night time toileting with the odd lunch stop as well.
When he started at a special preschool (Conductive Education) they started a toileting program with him and it was there we decided he needed to be able to tell us when he needed to go.  So we started with a basic card (you can see the picture we used above) and everytime he was taken to the toilet we would touch the card and say 'Toilet', we hoped he would learn to associate the card with the intention/concept.

Toileting Setback - Hip Dysplasia Surgery

Hip Spica Cast - Part One - 2011

Back in late 2010 when we were all reeling from the Canterbury 7.1 Mag earthquake we also got the news that our son had been walking with a dislocated left leg.  He was then scheduled for hip reconstruction and 3 months in a Hip Spica cast in early 2011.  He underwent very major surgery and ended up in a broomstick hip cast (see picture to the right).  During that time it was very unwieldy to toilet him but we managed it off and on by holding him on the toilet supported at the cast.  We got some modicum of success.  Alas this was a setback for more than just toileting so we abandoned anything formal as we just got on with recovering from both the 2010 & 2011 Earthquakes and his hip surgery.  When he came out of cast in Mid 2011 we again started gently working on his toileting, nothing major just morning and night-times.  Fast forward to summer 2011-12 and I put him in undies and spent a few weeks over the summer holidays trying unsuccessfully to toilet train him.

What were the problems?

We had to accept the fact there were a few problems with this whole toileting process.  Namely the following:

• He had no way of telling us he needed to go toilet
• He couldn't physically get to the toilet himself
• He didn't appear to be aware of his bladder
• He suffered from constipation as a side effect of his surgery

So we had to tackle those as time went on.  These are still issues years later in 2015 we have still not resolved.  He again dislocated another leg, this time the right hip, and needed another hip surgery and 3 months in a hip cast in early 2013. So any progress we may have made with him being aware of his toileting needs were again dashed as he had to get used to going in a nappy all over again!

Hip Spica Cast - Part 2 - November 2013

What Methods Have We Tried?

Over the years we have been given many ideas, methods, theories etc on how best to teach our son to be aware of how to toilet.  From pouring water over his privates as he sits on the toilet, to wearing undies within a nappy, to letting him sit in wet undies in the hopes he won't like how it feels.  But all were failures, he just didn't seem to be aware of needing to go the toilet.  By now we had 99% success with solids on the toilet and he was also using the iPad to request tentatively that he needed to go.  However, getting him to just urinate on the toilet was proving to be a hassle.  We were able to get him sitting comfortably on the toilet, his torso control was good and balance stable.  He was doing lovely standing holding onto a rail by the toilet so we could assist with trousers and nappy down and onto the toilet.  He was still struggling with ongoing constipation but medication was helping with that.  So heres a list of what we've tried and how successful its been or not been:

• 'feel wet' toilet training undies - they just got wet, he never seemed to get it
• reusable nappies (PUL+Microfleece - homemade) - they leaked, he needed changing, he didn't mind being wet
• Undies + scheduled time on the toilet - he would wee in the undies 5 minutes after being taken off the toilet, he never cared if he was wet
• wetting the privates - made him irritable and never made him wee
• running the tap while hes on the toilet - nothing there either
• Putting a tissue in his nappy or a strip of cotton fabric so he would feel wet - didn't bug him
• Undies and then a nappy over the top to catch any wees - similar to previous option - nothing
• Reward Charts and stickers for success - an excellent way of tracking successes but he never understood the concept of the rewards
• Water sensor placed in undies that played a tune when wet - terrified the poor guy!
• Trainer undies with a soaker pad - leaked, he never noticed he was wet 
• Scheduled toilet times - within an hour of a drink - mixed success, he appears to have some bladder control

Where to from here?

Well we're still working on that, scheduled times have been the most successful, along with modelling concepts (e.g. an adult going toilet and explaining while he watches on), and expectation that he will go at specific times.  Its been tricky to work out how soon after a drink or meal he will go toilet and to get the right timing, often he has been or will go quicker than I think.  But then other times I will take him and nothing will happen despite leaving him on toilet for 10 minutes.  But within 5 minutes of coming off the toilet he will go.  I don't believe he has too much awareness of his bladder but he does have awareness of going wees.  He does like the reward of us making a fuss and saying how great he is when he succeeds so thats helpful.

Continuing to model 'I need to go to the toilet' on his iPad has also proven useful.  He is now requesting to go even if hes not successful.  We are 50/50 successful these days.

I read this great blog entry http://bloomwhereheplantsyou.com/2013/01/diy-pull-ups/ about making your own pull-ups using sanitary pads with trainer undies and we are now trying that, undies he has helped choose and a Poise Extra Plus pad put in.  He is given the option of that or a pull-up nappy and he invariably chooses the underwear option.  The big bonus for us so far has been him showing awareness he has gone in the pad.  Everytime he has gone in the pad he has requested to go the toilet straight after so we can change it.  Just tonight he requested to go to the toilet and when placed on it he finally went wees successfully.  We have tried so many different ideas over the years but this fledgling success is promising.  We'll keep you posted on how this all goes. 

If you like us are finding teaching a special needs child how to toilet take heart, you're not alone!

thanks for reading my blog 

Vivien

More Links to help you start AAC Modelling 

Hi All, when we are first starting out with using iPads, Low Tech Choice Boards or other means to get our children to communicate it can be really daunting on 'breaking through' that communication barrier.  We might get success with simple motivating choices but often its like groundhog day with those choices being ALL they will use because they have been successful with them.  However, how do you progress?  How do you get past just requesting set items, like FOOD or DRINK?
Well recently another parent posted links on a Facebook group I am on and I thought I would share those links about Modelling and AAC (Augmentative Communication).  Feel free to ask questions regarding modelling and starting communication with your child.  I will do my best to help you! Remember we're all different and so are our kids!

• https://www.facebook.com/pages/PrAACtically-Speaking/1488812111389361?fref=ts

• http://praacticalaac.org/…/how-i-do-it-encouraging-aac-imp…/

• http://4waystoliteracy.weebly.com/…/2…/using_als_at_home.pdf

• http://www.rockybay.org.au/…/6.2-Teaching-Strategies-Modell…

Cheers, Vivien

How do I get them to Understand Communication?

Hi All

I have been having a lot of thought lately (& discussions) about getting kids past that hurdle of understanding.  Reading my blog might give others the impression it was easy for us, and somewhat miraculous and years down the track it almost seems even to us that it is!
It helps to have a motivated child who is keen on learning and receptive to what they are being given and shown.  Perhaps now at almost 8 years old our son seems to be that way.  However, that wasn't always the case.
He complained, he refused to look, he wouldn't let you redirect his hands, he wouldn't even engage with the iPad originally and certainly didn't have the fine motor skills to manage it.  He has astigmatism and won't use his glasses so his eyesight isn't the best either.  These are all factors that go against his being successful with ANY form of communication.  For years we just got grumps and passive acceptance of whatever he was given, he just learnt to be Ok with whatever was going on and we had a lot of bad behaviour formed out of frustration.  We always gave him Marmite on toast but when he learnt to communicate we learned he actually loved Honey which was why he tended to throw away his toast and not eat it!
At the beginning I totally expected my son to 'see' and understand the pictures he was given, to associate that a picture of cheese was actually cheese.  But somehow he didn't get it, I could tell him that the photo I was showing him was cheese and he would be happy with that, he would accept that it was cheese even though he knew it wasn't edible and totally wasn't cheese, it was just a PHOTO of cheese.  Herein lies the problem, we as parents and adults know that a photo of cheese, is just a photo of cheese, we know that we can go into the fridge and get some cheese and cut a piece (or unwrap a piece) of said cheese.  Your child knows you have cheese somewhere, probably in the fridge and they know a bit of complaining and maybe even fussing at the fridge will make you guess they need or want some cheese.  Maybe every morning tea they get cheese and they look forward to that special time the cheese miraculously arrives in front of them.  However one morning you don't give them cheese you decide on a piece of apple instead.  But they wanted cheese! Ensuing complaining and behaviours start.  We don't get it, they love apple, but suddenly they are upset! If ONLY they could tell us what the problem was, maybe they're sick? tired?  Did we say something wrong? Who knows?
We might try signing, trying to ask lots of questions and add to the kids confusion.
This is the scenario we are faced with, so we maybe with the help of an SLT create a bunch of PCCs (Picture Communication Cards) or PCS.  Usually they are large photos of desirable items, like cheese.  We encourage our kids to look at these photos, we explain they are cheese, we expect them to get it, and we feel defeated after weeks of showing them the photo of cheese, telling them its cheese and they refuse to touch it appropriately in order to get cheese.  When we test them by showing them a picture of socks and a picture of cheese they happily touch the socks photo and expect to get cheese.  We suddenly realise our kids didn't really understand the photos and we wonder if they are as smart as we think they are if they continually choose socks instead of the cheese photo.

Well I am about to shock you...STOP RIGHT THERE!!

I've been there too, its disheartening, its confusing, bewildering and causes you to re-evaluate everything you think, do and expect.  You can completely give up and think your child will never get it.  THEY WILL AND THEY DID....
Something I found was that the SLT's never mentioned the obvious.  Your child DID get what you were trying to get them to do, they DID communicate.  They may not have chosen the right card but they DID CHOOSE.  What you did was Step one in a long process, you got them to understand what was expected in this communication journey.  They learnt that in order to get what they wanted (whatever it was) they had to touch a CARD to get it.  That is enormous! That is communication! That is progress.  So DON'T feel defeated, don't think your kid is stupid, because they are not.  They got what you were trying to show them.  If they do something like touch a card (or an ipad button) they get something they want.  You have just shaped a behaviour.  It doesn't matter what is on the card, or the button, right now they don't really understand whats on that card or button.  They understand the concept of doing something to get something else, and thats what we want.
Phase 1 of PECs training is all about shaping behaviour to get a desired result, all that phase is after is getting the child to hand over a card in order to get something.  It really doesn't matter WHAT is on that card, it could be anything from a word, to a picture to a colour to anything you feel like.  You are teaching them a process first, picture recognition comes later.

We have had to reset before and go backwards and not use cards too, and we still do to some degree use physical objects for choice making.  We will often show a banana and a yoghurt say and get him to choose between them by handing us the one he wants.  Thats still a useful communication tool.  Thats still a choice.  In the early days we often at breakfast had two cards in front of him (FOOD and DRINK) and just out of his reach was his weetbix bowl and a drink of milk.  Both cards sat in front of those items and we would point at the cards and then at the physical options and say slowly and calmly what each item was.  He would reach for the weetbix and we would gently push his hand down to the FOOD card and say 'FOOD'.  He often wouldn't look and would again reach for the bowl and maybe start to vocalise angrily.  We would then hold the card up and say 'FOOD' again and then hold the bowl up and again say 'FOOD'.  He would just continually reach for his bowl and complain getting quite teary.  It took a LONG time to shape behaviour into touching a card and get past the tears and frustration.  Many times we wanted to give up and didn't think he would ever get it.  We have discovered with many things with our son that everything TAKES TIME.  I really wish there was an express train to training but there isn't.  At the beginning don't expect your child to understand the symbols, photos or whatever you are using.  Get them instead to step one, understanding if they want something they need to first do something for you.  Shape that behaviour and you have success.  Eventually you can teach them the point of each card.  You need to first motivate them to communicate and to want to do something for you so you can do something for them.  Find what their motivation is, a favourite toy, a DVD they love, some food or drink they MUST have, a trip to the park.  Whatever it is, you need to say to them 'Well if you want this then you need to do this for me first'.  They will get it quickly, trust me.  But whatever you do it must be a positive and successful experience, don't set yourself and them to fail.  If you are offering them cheese then have it ready to give straight away, no fussing, no going to the fridge, no going to cut it or otherwise.  If you're setting up the environment for success have the object nearby to associate with.  In the case of the park you might drive there in the car and then point at it and a picture in your hand and ask them to touch the card before then getting out of the car and going to the park.  If they don't touch the card you might instead drive off up the road and try again.  Focus on the learning on days your doing that, don't be distracted by other things or the child will learn that the phone ringing or a sibling being involved is all part of the process and will expect the phone to ring before they touch a card and get what they want.  Kids are literal.  They learn process.  If one time they were successful in getting what they wanted but the phone rang in the middle of it or you spoke to their sibling to get the item, you may find they refuse to do the same thing a different day and wait passively or don't engage because they are waiting for the phone to ring or the sibling to arrive to start the whole process.  Try and make it a quiet time with little distraction, I know how easy that sounds when I only have one child, but for the beginning process its what you have to do.  ANY distraction will ruin yours and their success.

Take heart, it does seem a tough road but once you break through you can quickly leave that behind.

GOOD LUCK!

PS> heres a great link discussing Teaching using repetition: http://www.autismmind.com/Teaching_Strategies_srk/Repetition_cnk/

How Do I get This Kid to Communicate - Part 3 - Using our iPad to Communicate

Using his Choice Board clipped to
an acrylic stand

 Hi All, Well I thought it was about time to talk about how we got lucky and our son started to use his iPad to communicate.  It was a LONG process that we thought would NEVER happen.  I have thought at length on just HOW he started to use the iPad to actually talk and choose items.  What was it that finally worked?  What did we do?  What was the miraculous thing that made it all happen?
I wish I could say I had an answer for that, but alas, I don't.  Thinking back over it I suppose there was a lot of different things that all culminated with success.  Some of it was the low tech PECs training and choice boards, some of it was the early AAC Apps like Talking Cards being used and modelled, and some of it was pure luck and him being ready.

The 'AHA!' Moment

One day about 2 years ago we were all sitting around the table after having breakfast, our son was happily mucking about with his iPad as he often did going in and out of Apps just checking out what they all were and what they did.  He had been randomly going into the 'Talking Cards' app off and on and just listening to what each button said and we had learnt to ignore most of this exploring.
 We figured it wouldn't hurt him to just explore rather than us model or force him to use it. Up until this point he had never really initiated any choosing on the iPad using his App.  It was all forced choosing with us modelling and hand over hand button touching to get the correct answer and then be given what he had requested.  He seemed to understand it but never get the point and wouldn't really try without being 'made' to do it.  He was pretty passive and would only use his PECs Choice Placemat to choose anything.  By this time those placemats had started to get flung and he was obviously over those too.  But back to our original tale...

This particular morning he was quite interested in the AAC App, randomly listening to what each button said and trying them out.  When he started tapping 'BALL' we looked at him and said 'Ball? Ok, I'll get one for you'.  He looked stunned and watched us go out of the dining room.  I duly came back with a ball and sat there playing with it expectantly.  He got a little agitated and vocalised, but we ignored him.  I asked him to repeat what he'd said on the App and he looked confused.  I then told him if he wanted the ball he needed to ask with his iPad.  He looked at the iPad, looked at us, then complained vocally again.  I looked at hubby and said 'Would you like the BALL?', he said 'Yes, I would like the BALL'.  So I passed it to him.  I then signed Ball and asked for it back.  We did this for a few minutes with our son getting most annoyed.  I pointed to his iPad each time and said 'Ask for the BALL'.  He eventually touched the button again and we said 'Great! heres the ball'.  His face flooded with that expression we all know as 'OH! I get it'.  Suddenly it dawned on him what had happened and he was very excited.  I asked for the ball back and he gave it to me.  Then I played with it for a bit and he again hit the 'BALL' button and I gave it to him and said 'Yes, you can have the BALL'.  We did this back and forth for a few more minutes and he was SO excited.

Using his iPad whilst in
 his Hip Spica Cast

That was our big breakthrough.  We were on school holidays he was trapped again in a hip Spica cast thanks to another hip surgery and couldn't do much but we had something we could work on.  It was from then on that his use of AAC on the iPad just took off.

Talking Cards to Proloquo2Go

We started to add extra buttons and choices to Talking Cards as his level of choosing and wanting to use the iPad to choose got better and more consistent.  All through those 6 weeks of the school holidays he got better and better.  We were using it mostly to choose food items, but he also used it to choose what he wanted to watch on TV, where he wanted to go to, for a walk, to the park, for a swing or even to the swimming pool.  He really started to enjoy using the iPad to control things and he became empowered quite quickly.  The lovely thing about it all was his frustration levels went down as he was finally able to say that he really preferred honey on his toast not jam! (this was by constantly asking for honey when asked if he wanted jam on his toast).
Then school holidays finished and he returned to school. We sent along the iPad but never told school that he was using it to communicate, his teachers and aides continued to use his Choice Book which was a series of pages within an A5 Flip Book. After a few weeks of school we admitted that our son was using the iPad to choose at home and that he was rather good at it.  The School SLT was amazed as were all his teachers.  When they saw just how good, they then encouraged and expected him to use it to choose and converse.

Our Talking Cards Folders

However, Talking Cards was really limiting, no matter how much I tried to setup the varying folders with useful buttons it really wasn't setup for an emerging communicator like our Son.  I started to research AAC usage and read a LOT of blogs, webpages, joined facebook groups and generally upskilled myself on HOW to setup AAC Apps for basic communication.  Both myself and the School SLT realised quite quickly that his Talking Cards App was never going to work for long.
So I downloaded and setup ' Sounding Board'.

Here's another disclaimer: in a previous life I used to be a Senior Microsoft Computer Engineer and a both a DBase & Web Programmer, so I am comfortable with technology.  Configuring Sounding Board and setting up a flowing AAC App of choices and folders was quite my cup of tea and I found it easy.  Therefore I don't suggest you do this unless you feel confident you can.  Its an excellent free App, and if you can set it up with a series of folders and get it to work for you, go ahead and do it.

For a few weeks it worked really well, but if we needed to add more buttons to his folders often Sounding Board would break and I would have to recreate the folders all over again.  I could never get a good resolution from Ablenet the developers of Sounding Board so I had to regroup and think of another App that would do the job.

Sounding Board Main Page setup (the arrows show links to other pages)

By now I had to been researching on the web for a LONG time and knew of a few Apps, had seen YouTube videos, knew the costs and was aware of AAC apps that may help.  But right now our Son was keen on the way I had setup things and we really didn't want to blow all that work.  By now he had been using his iPad to 'talk' for about 6 months. So what AAC app could we use that we could setup to be like his current AAC apps?  From what I could tell the NZ$300 App Proloquo2go was the best option. But it was expensive.  So we waited until iTunes Cards were having a 25% off sale.  We brought enough iTunes $50 cards to make up $300 and brought Proloquo2go essentially for sale! Well at least with a 25% discount!

On the Proloquo2go Journey we go...  

I then spent a few long nights watching Assistiveware Video Tutorials and I went with a Basic Communication user first off with standard folders.  I started to modify that setup quite quickly to look much like his Talking Cards setup and have the same sort of flow as Sounding Board. So despite installing Proloquo2go I never used it configured 'out of the box' and instead attempted to create a system that 'flowed' easily for him.  A sort of  'mind map' based on how I thought he might make sentences, and from the experiences we were already having with him.  Not once did I think that far ahead in my design of the folders or buttons. For some time this setup really worked, it was based on what he was saying right then, and he loved it
 because it was getting him what he WANTED.  I never really understood language acquisition and certainly not in relation to my son.  I didn't really know what he knew and what he didn't.  His iPad communication was proving he knew and understood a lot.  Here was our conundrum, we had it setup to provide 'sentence starters'.  The most often used folders were 'I WANT', and 'FOOD'.  In the FOOD folder I had it set based on eating times, so food items were grouped in BREAKFAST, LUNCH, DINNER and SNACKS.  Over time I needed to add in Core Words so he could start to enlarge his vocabulary.  This is when we hit problems, he had always had some core words thrown in there, his top line of his setup always had YES, NO, MORE and FINISHED.  Obviously I WANT was core words too, but he wasn't using them in context he was using them because I had 'made' him use them in order to get to where he wanted to be, which was often eating Munchos or cheese!
The School SLT was asking us to include more Core Words and we needed to start adding them in.  So cue more long nights watching videos, reading blogs, and getting on the Proloquo2go parents FB group.  Its here I think I will leave this blog entry as its another story in itself how we progressed Proloquo2go and added core words into his vocabulary.  Believe it or not our story as you have read it so far still has about 2-3 more chapters to go!

Thanks for reading my blog and stay tuned for the CORE WORD CONUNDRUM!

This is a slightly advanced version of our original Proloquo2go home page.  You'll see how each folder is basically a 'sentence starter'.  If he touched 'I WANT', it would speak that to the sentence strip you see above all the buttons, he could then touch FOOD folder, and in that folder a SNACKS Folder, and in there CHEESE.  The sentence Strip would then have 'I WANT CHEESE' on it and he could push the strip to say that sentence out loud. 

Thinking of a Core Vocabulary

Even though I have yet to have continued our jump to iPad communication story yet and explained quite where we're at I would add in something of interest I recently discovered online.

As I am sure you have read in my previous posts about our communication journey, I label things, give them nouns and point them out to my son so hes aware that things have words associated with them.  This naturally leads to symbols and eventually awareness of symbols as a language.  Letters themselves are symbols, and those letters make up a word that we recognise as a word once we have learnt to read.  For kids like our son he may not understand words in the written form but he is learning to associate symbols of another form - pictures, and associate them with words.  I don't know if he really understands the letters form a word, but he definitely has learnt the associated symbol picture which is often just a photo of the object.  These pictures are often nouns, food items, clothing items, desirable things like TV Programs etc.  But they most definitely aren't a 'core word', like I, ME, HAVE, WANT, GO etc.  Hes started to learn those words have purpose on his iPad and uses them to make sentences.  Mostly thats because I have put desirable items within folders that have a core word like GO or WANT as their title.  So he simply goes to his WANT folder and within that he can find his FOOD folder and eventually his MUNCHOS button.  By this time he has created a sentence saying I WANT, FOOD, MUNCHOS, mostly without trying.  Hes learnt this over time and with modelling help from myself and other people in his life. But I have wondered for a LONG time how to teach him the concept words.  Words like LOVE, LIKE, HERE words that have meaning but no real associated symbol as such.  Can I get him to create a sentence like I LOVE YOU using just buttons on his iPad?  So I am in that phase right now trying to wrap my head around core word concepts and teaching my son how to use them.  Hes currently stuck in that choice level communication of wants and needs, and any elaborate sentence making is limited.  As I have chosen to be his iPad AAC Programmer I need to understand him and the concepts of language.  But returning to my original point of this post:

I read this facinating page: for-the-love-of-core-and-labels-labels-labels
and the concepts they discuss with labelling items struck me and made me re-evaluate my 'noun' based labelling around our house.  Now I think I will go around replacing my labels with more useful 'sentence' labels as this quote from the above link says " label things around the classroom or the home with core word phrases to help learners with delayed language acquisition gain additional exposure to functional core word meanings in the context of their play and learning environment."

So lets see where this leads in our ever changing journey!

Cheers, Vivien

How Do I Get This Kid to Communicate? - Part 2 (Next Level)

Welcome to 2015!

Well its been a long time coming this blog post.  Mostly because I couldn't think of just HOW we got to this point and remember back to just when he started using the iPad.  We were early adopters of the iPad buying it from Apples Online store and waiting a good month for it to arrive from China.  It was one of the early iPad 2's.  Back then I had seen a few iPads in stores with Proloquo2go on it and other AAC (Augmentative and Alternative Communication) Apps.  I didn't think our son would ever really use one let alone understand it back then.  My Husband 'gifted' the Talking Cards App to us via iTunes and we installed it.  I originally set it up with just a few of his favourite food items, and used some of the buttons that came with it.  It was a good simple App, and back then his iPad2 had a reasonable microphone.  It was tricky having both the inbuilt voice (an american female voice) and my own saying the words I had against each button.  Back then it was simple words like FOOD, DRINK, MUNCHOS, CHEESE etc.  Even though we showed the app to him he never really understood it or used it.  We had a bigger problem back then - tactile defensiveness  with his hands.  He also lacked motor control or any sort of fine motor understanding.  So he could barely get past a fly swat type thump of the iPad screen and certainly couldn't individually point a finger and stroke or touch easily.  So we had to work on finger isolation first and that was going to take time.

Finding our Fingers

When we first got the iPad we were using a PC computer and a switch we borrowed from the special needs toy library to play simple switch based games.  All those games required just a 'smack' of the big button switch so he never had to isolate a finger and even though he could pick up crackers, hold a cup or bottle etc.  we were still in the process of helping him to hold onto spoons, cup handles etc and he really didn't have the strength to do that easily.  We were SO excited when he reached out and unfolded his fingers and picked up a cracker using a scooped hand one day.  So thats where we were at, working on motor skills of using his hands properly.  He had no easy pincer grip so that had to be taught too.  So instead I installed simple cause and effect Apps on the iPad like 'Baby Finger' and 'Sound Touch' .  We also purchased 'Injini' which was expensive but has turned out to be worth more than we paid for it over the years.

I spent a quite a few times during the day sitting with my son on my lap grasping his right hand and prying out his index finger and then getting him to touch the iPad hoping the cause and effect apps would motivate him.  At first he got grumpy, resisted, pulled his hand away, and sometimes cried.  I kept at it over the months and eventually he got more and more interested at playing with it.  During that time it was always hand over hand help, although as time went on I was able to leave him for a moment or two to 'flyswat' the screen and it didn't matter as Apps like Baby Finger were so forgiving and any touch on the screen would result in a response and that was motivating for him.
At this time we weren't really doing much Low Tech communication apart from a few cards and the labelling of items around the house,  but nothing formal.  I was doing some Makaton sign language at him but really getting no response, he was quite passive in his world and allowed me to dictate whatever he wanted to eat and do.  He did have his favourite foods, yes even then Munchos were a favourite.  I was also helping him eat finger food whilst sitting in a highchair and would put small items like Munchos in front of him and assist him to eat them.  Slowly but surely we got to understand his hands and he got better and better at isolating his fingers and I needed to help him less and less.  Even now 4 years later he still has trouble with his fine motor skills and can have difficulty in touching buttons on the iPad, he tends to use his second finger rather than his index finger.

Early iPad Communication 

So now to our initial foray into iPad AAC.  Well as mentioned above we had 'Talking Cards' Installed modelling' how to use it.  What we did was setup a series of expectations.  If he wanted cheese then we would sit there with the cheese nearby but out of his reach.  He would obviously get agitated and vocalise rather loudly! When he did that I would go to his iPad in front of him and press the FOOD folder and then touch the CHEESE button whilst explaining to him why I was doing that and what I wanted him to do.  I would then grab his hand and get him to do the same steps.  He would often resist and get a bit annoyed.  But I would persevere and once he had allowed me to get him to touch the CHEESE button then I would hand him a piece of cheese.  Slowly he seemed to understand what was expected.  It wasn't always consistent, when he was at preschool they didn't tend to follow through or remember to ask him to use his iPad and I never insisted they use it and encourage him to communicate.  So eventually he got bored with the whole thing and gave up using his iPad to communicate.  There was a dispute with his then SLT who believed he was just being random and appeared to have no understanding of what he was doing or what the buttons meant.  She thought we were pushing him too fast and needed to take a step back to the Low Tech method first.  In some cases she was right, but we totally believed in our son and his ability to 'get' things and being much smarter than others gave him credit for.
and did spend a little bit of time '
In those early days it was more a choice board system of desirable items that he tended to eat or want to watch on TV.  We threw in a few other important words like Cuddles, Swing etc but it was basically a menu of 'wants'.  He was never consistent and began fly swatting and never really stuck with it. So we gave up using the iPad to communicate and went back to a mix of signs, cards, and worked on him having a consistent YES or NO instead.  Quite by chance we worked out he was clapping for YES and that changed everything because we were finally able to ask him direct questions and get a YES response.  Because of that we used the iPad even less and instead concentrated on reinforcing his clap for YES response whilst trying to encourage a NO.  Generally a NO for him was a non-response or a look away and disinterested.  So we go onto giving him physical choices in front of him instead of picture cards.  If he wanted toast we put a jar of jam and a jar of honey in front of him and asked him to touch which one he wanted on his toast.  We still sometimes do this with him but expect him to choose now on his iPad!

Giving up on the iPad and going back to Low Tech

So by now we had decided the iPad was only going to be used as a toy with education items and motivating cause and effect apps and the Talking Cards was forgotten.  In tears I went to his SLT and agreed I wasn't getting anywhere and could she help?
It was at this point we decided on PECs and starting a formal series of lessons implementing PECs and going through the phases with our son.  So over a few months we spent a day a week with the SLT doing proper PECs phase training with him, and he responded pretty well quite quickly.
 Eventually just before he transitioned to school at the age of 5 1/2 years old we discovered he couldn't make it past phase 3 as he was unable to physically move so couldn't grab a PECs card go find a communication partner and hand them the card to get what he wanted.  We tried other methods to test if he was capable of doing that but never found a useful way to make it work.  Then we had the problem of him becoming fixated on the sound and feeling of the velcro dots on the back of the cards and he started to rip the cards off the PECs book and throw them away or just enjoy pulling them on and off! So at home we gave up on PECs cards and looked for another solution.  It was then we went to the Low Tech placemats and started modelling those as mentioned in our first Blog entry on our communication journey.

So how did we eventually get to using the iPad to communicate?

I will leave that to another blog entry as thats another LONG story!
Keep posted for Next Level - Getting him to want to use the iPad


Thanks for following my blog!

Vivien

How do I get this Kid to Communicate? - Part 1a (Addendum)

I have been thinking a lot about my first post about this communication Journey with our son Evan and thought...Ok, I told you OUR story...and mentioned briefly how WE did it, but if you're there at that point with your kid thinking...great I'll try that too...but HOW do I even start?  Well I've been there, and I can sympathise.  Even with an onboard Speech Language Therapist you see every other week (or maybe less) it can seem really overwhelming when you have a frustrated non-verbal child grunting and crying because, well, "you just don't understand me!!".  Yep, that acting out phase where they may physically act out, you know, tantrums, thumping, biting, vomiting (yep, we had that too), and the all important: every time Mum or Dad talks - SCREAM!!
It can be soul-destroying, frustrating and bewildering for all of you, believe or not those are actually your child communicating, even though it may not seem like it.  So HOW do we harness that 'bad behaviour' and turn it into meaningful communication?  Thats what I was stuck with 5 years ago, a child that was really happy and unhappy all in one go, I would talk endlessly at him, use sign language, sing songs, read books, point out words..yadda yadda...but it seemed to just pass him by even though he did say the odd word.  Then came our crunch time, major surgery, out of the blue, our son had a dislocated left leg that was going to take major work to fix.  He was going to be stuck in a pelvic(hip) spica cast for 3 months.  Well believe it or not the sunshine in all those storm clouds was an opportunity to connect with our son as he was going to be a 'trapped' audience.  It was that and the time was right I guess...but anyway, I am getting off topic.

Disclaimer
Just so you know in a former life (we all have one of those) I used to be a Senior Computer Engineer and have LOTS of experience with technology so I may come across a little technical or give you information you may go "yeah, great, but HOW do I do that?".  Sorry, but I will try and explain and if you need help you can always add a comment and I will try and help.  Also, remember this is one families journey, one unique childs way of relating and communicating.  Every person is different, has different experiences, different problems and skills.  It doesn't mean they won't communicate it just means you haven't found the common ground yet between you to start that dialogue. Take heart no matter how overwhelming it seems, break it down into small manageable moments and you may just find a place to start and maybe like us get a breakthrough.  I am NO SLT, I have no real experience with this apart from what I have learnt, read, experienced, and tried.  This is about how WE went about it and what we found works for us.  Others may have other ways, maybe better, maybe their SLT is fabulous and has great ideas.  Either way I am not advocating anything or promoting any particular product - I am just telling you how I did what I did and what products I have used and found useful.  That said lets give you an insight into what has worked for us.

Stop and think for a moment...
Before you even embark on this if you haven't started already or are still coming to grips with a bunch of failed tries to communicate.  Take a step back.  We were there too, rushing headlong bombarding our son with words, books, pictures, sign language, hand over hand helping etc.  What I didn't realise is I was trying to get him to understand ME, when really I wanted him to TALK to me, so I could understand HIM.  Of course its natural to push your language at a child, you wants and

needs and forget or maybe not even realise thats what you're doing.  So step back, look at your child, be mindful. What are they doing?  Are they actually communicating with their grunts and cries, are they in context?  Are they flapping a hand, shaking their head, looking away or maybe even towards something, do they close their eyes on queue when they don't want something.  When you ask them a question like "Do you want a drink?" do they cry, reach for it, grunt, babble, or just ignore.  All of those are forms of communication. So look at them, take note of these situations because all of them are opportunities for communication.  If they reach for a drink you maybe have in your hand, then great you can redirect that activity to a picture card and have them tap that instead.  If they flap their hands or clap (like our son did), great you can redirect that activity to a switch button with a 'YES' word spoken or even to a picture card.  Its intention, they are showing intention and that is worth redirecting to useful output! Ignoring is still communicating, its a non-response, so maybe they didn't want a drink, so you can use that as an opportunity to say "NO? Ok, would you like MORE food?"  so you just acknowledged their non-response as a NO, and maybe it won't seem it but the child probably notices that and will continue to use that as their means of saying NO.  In these situations its well worth it to learn basic sign language (pick your method - we use Makaton and NZ Sign) to sign words like NO, YES, MORE, FINISHED, WANT and others that may be handy.
So why am I so interested in this food thing anyway?  My kid doesn't eat, they're either tube fed or fussy.  What then?  Well of course I am going to talk about food, thats my sons motivation, yours might not be and thats Ok.  But I bet they love something, what is it?  TV? YouTube? Swinging? Cuddles?  A favourite toy?  So in those situations again stop and think, wait for a moment.  What is it your child is doing when you are standing poised with the TV remote, the favourite toy?
If it helps, write down what you think your child loves, even if its just you! While you're at it write down what you notice through the day as noises, try and notice when the noises happen, what are you both doing?  Are you talking to them? Asking a question?  Are they happily doing what motivates them?  Or is it just random?  Just watch, take note, take video if necessary.  Try and work out what makes your child tick.  Its that mindful step back and watch rather than DO that seems to help.  If you ever get a quiet moment think about your interaction for the day and you'll realise you communicated in so many ways through touch, words, gestures, and actions.  It doesn't have to be a formal iPad AAC App, it doesn't even have to be sign language, or Picture Cards.  There are many other ways to be understood.
In our household we use the phrase "He just doesn't understand the rules of the game yet".  I have used that with many SLT's over the years.  Once our son knew what we wanted from him and how to play that game he was off and 'running' and still is - hes a heck of a lot faster than us too!

Software used (Windows PC (XP/Windows 7) 
Ok, so I use(d) a boring old Windows XP Netbook (HP in fact) with no CD/DVD drive and limited USB ports, memory etc etc.  All that mattered was I had a computer to do stuff with and access to the internet.  I had no fancy camera, I used a standard old Canon 2 Megapixel camera to take my photos

and I just randomly photographed stuff and uploaded it to my PC.

I tried using MS Paint, MS Word, and inbuilt software like it but found in order to adjust the picture size, crop the photo, or whatever I needed something else and it had to be FREE!

So over the years I have been using the following programs on my PC:
Serif Page Plus Starter Edition 
- A free Desktop Publishing software that is great to get started with manipulating pictures on a page and then printing it and laminating.  I created a series of templates of a certain size box to put photos into and then text to create my choice boards.

PhotoScape 
- A free photo editing tool that I found really handy over the years for doing all sorts of edits of my photos and graphics

Google Image Search - yep I just typed into Google Search Engine whatever I was looking for and click on the Images section.

I did use an earlier program called QuickPics but it is no longer available, and the graphics are available out there still - Google Patrick Ecker.  

Also I registered for a free trial of Boardmaker which gives you a 30-day trial to play with the software and create your own boards, test some out and get your own graphics.  It was a handy way to get some early boards done with good well known graphics that I could use without spending $200+ on the software that I may never eventually need all the time.  

Other Stuff

I also brought a cheap A4 Laminator, Lamination Sheets, A pencil case to store all my cards in or a cheap plastic lunchbox, a colour printer, scissors, BlueTac, stick on velcro dots (hook & loop) and plenty of other things over the years to do the Low Tech cards we originally (and still) use.  

Heres a link to my Pinterest Page too where I keep all my handy to read items on both Low Tech (paper & ink) aids, and the AAC (iPad) communication 

Pinterest - Special Needs - AAC/Communication 

I'll be back in a few days to do Part 2 of our Journey - Thanks for reading my BLOG!

Generic Choices - Free Printable

Hi All

I have had a request to provide a few files for labelling your items at home so I thought I would provide two free printables so you too can go around labelling the doors at home and your drawers.

So heres the links to the Google Drive stored PDF's

You will need a Google account in order to access them:

Generic Choices 1.PDF
Generic Choices 2.PDF

How Do I get this kid to communicate?? (PART 1 - Baby Steps)

I thought I would write a blog entry about our endless journey on this Special Needs Train we're on.  One of the biggest hiccups for our son has been his ability to talk which has come and gone.  He used to talk when he was 2 years old, only small words like Mum, Woof Woof (for the dogs) and a few others I can no longer remember.  He also has said 'Hello' and 'Banana' over the years but they have all but vanished.  He just garbles now, I think the official term is 'Jargon' where a toddler knows the vowels and the consonant sounds but doesn't form them into words.  Random words will pop out but we've accepted he is non-verbal.  At 7 years old we just have to leave him to it and hope one day he remembers how to talk.  That aside we realised the only way to help his frustrations was to get him talking SOMEHOW.  It wasn't obviously going to be a voice so where next?

LABEL EVERYTHING

A Mum I met early on suggested we label things in our house with large laminated picture cards so he would be at least exposed to PCS (Picture Communication System) Cards early on and we could continue to point them out.  Of course they were going to be nouns, naming words.  So we set about labeling the toilet door, his bedroom door, the bathroom door, and his drawers in his room to say what was in each drawer.  We also had a 'brush teeth' card by his toothbrush in the bathroom.  They are still there today somewhat ignored by us all now.



SIMPLE CHOICES  

So we then moved onto choice boards, and flip books.  We took photos of things around the house and filled a small flip page photo album with familiar photos which he used for comfort at the Preschool.  Every-time he got distressed they could pull out his photo book and sit with him and he would calm down looking at familiar items, Mum, Dad, our Dogs, the car, his bedroom, all sorts of things.  I did put words on them but he really never noticed the words.  So after trolling the internet for advice I landed upon large simple choice cards.  One for FOOD and one for DRINK.  At home we stuck them onto the table in front of him either side of his plate.  We would encourage him to touch each card in order to 'request' some food or a drink.  He would get annoyed at us and wail, but we persevered. He did eventually get the idea and would touch his card when he wanted more FOOD.  We discovered however that even when the card wasn't there he would touch the spot where the card should be and tap.  It was then we discovered the card didn't matter and he wasn't aware of the picture or the word on it.  He had 'motor planned' that in order to get something he needed to tap that spot on the table and people would give him things.  So where to next? How do we get him understanding the pictures and cards have meaning?

CHOICE BOARDS

Next came the simple strip of choices, and large pieces of paper with 4 photos of food choices that we stuck to the front of the pantry. As we came in for morning tea I would take him to the picture and manually hand over hand touch each picture and state what it was 'CHIPS', 'BANANA' etc and then slowly go back and wait for him to make a choice.  I could tell he was choosing an item by the pressure I felt of his wee hand pushing the page.  As he got better at the choosing he would touch each of the pictures himself and wait for one of us to say what the pictures were.  It was then we realised he was 'auditory scanning' , he needed to hear what each picture was called before he chose what he wanted.  Again we realised the pictures didn't matter it was the words spoken and the motor planning of what each picture was and where.  So we added a second 'Core' choice to his choice boards the 'I WANT' button knowing he wouldn't really get it as such but we would continue to model it with him, tapping the 'I WANT' picture before touching the FOOD picture so he learnt the sequence he needed to do in order to get what he was after.

This went on for a few years and at the same time we were doing Makaton sign language with him.  Over time he developed a means of saying 'Yes' by clapping, it was this definite yes sign that helped for our next level of communication, which was also asking him direct simple questions and getting an answer of YES or a non response which we took to be a NO.  He was still doing great choosing using the simple choice boards as well.

But this is when an SLT (Speech Language Therapist) also came into our lives and things started to change.  Also we purchased an iPad2 at this time and put a basic AAC (Communication App) on it.  We never told the SLT we had done that, we just put the App on and setup a few basics and modelled with our son to choose the items on it.  He couldn't manage the dexterity needed to touch the buttons on the App but again we kept helping him and did educational play (cause & effect) till he got the idea of how to use his hands on an iPad.  I will leave the rest of the story for Part 2 - Next Level