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. 

Neoprene iPad sleeve turned into a carrier

Hi all I thought you'd all like to see the hack of my sons old neoprene iPad sleeve turned into an inexpensive carrier for him. Unfortunately he needs his iPad in so many places & as he's not completely wheelchair-bound it needed to be more portable than a fixed mount on his wheelchair. Also the fact he's self-propelled in the wheelchair meant any mount would get in his way. 

So I quickly made a carry case to hopefully solve a problem at school. 

It's yet to have been fully tested in the school environment so I'll let you know how it goes. 

Here's a photo of the back of it