Wednesday, 26 August 2015

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