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Potty Training Our Son … Who Happens to Have Additional Needs (Down’s Syndrome)

Potty training is something that’s been a big mental hurdle for me to cross with Saajan. Where with Arjun it was pretty straight forward (admittedly it’s when I was pregnant with Saajan and temporarily living with my parents while we had building work done which meant I had an extra 4 pair of hands!), I had assumed that it would be a lot more challenging with Saajan. Don’t get me wrong, it wasn’t a doddle, but I did overcomplicate it massively! Sometimes the fear and anxiety of something is far greater than the reality. We have mastered day time toilet training and next need to tackle the nights – he’s had a few dry nights but I want to wait a little while before tackling nights.

I’m just putting it out there incase the potty training police come for me – I am by no means a professional potty trainer nor am I am expert in kids with Down’s syndrome/additional needs. I’m merely sharing our journey and what worked for us.

How did I know Saajan was “ready”? To be honest, I didn’t. He would sometimes randomly say “poo poo” if he felt a sensation in his nappy. That was my only real cue.  

Before you begin

1. Where’s your head at?

Whether you have a typically developing chid or not, a lot of the success around potty training (I believe) comes from “where your head is at”. I’ll explain why … during the first lockdown, Saajan learnt to walk at 3 years and 4 months. At around 3 years and 6 months, I decided it was time to tackle potty training. It happened to coincide with mounting stress and mental health challenges I was facing at the time – i.e. my head and heart were not there. I remember removing his nappy and placing him in pants while ensuring I had ample of nappies around “just in case” (the fact that I was “just in case’ing” meant that I wasn’t whole heartedly in). The first day was a disaster – 18 wet pairs of pants and a poo explosion wasn’t my idea of fun. I quit. I gave up because I thought “he didn’t get it” – I had no patience.

Back went the nappy and we cracked on with life. To be honest, I just couldn’t be bothered at that time as much as I would have loved for it to have happened – my desire wasn’t greater than the effort/patience that I was prepared to put in.

A week before schools were due to close for the Christmas break, Saajan’s nursery had a coronavirus case and he was asked to self-isolate. With having a week off where I could focus solely on Saajan, I decided to go for it. This time, there were no extra pull ups added to my shopping basket and my mindset was “I’m removing the pull ups and there is no going back, whether it takes me a month or a year!”. And that was that. And here we are a month later, potty trained! Where your head is at makes all the difference to a) your patience b) your perseverance c) your desire.

So, the first thing, ensure you are absolutely wholeheartedly in the right headspace.

If you’re not, the likelihood is that you’ll end up like me in lockdown one! It’s absolutely ok to not be in the right headspace right now – there is SO much going on and remind yourself that your child will be potty trained one day! Go easy on yourself. It isn’t a race 😊

2. Be realistic

There will be some really really good days and there’ll be some not so good days. It’s rare to whip your child’s nappy off and for them to automatically know what to do. It takes time, patience and perseverance.

What works for you may not work for me and vice versa. That’s why number 1 is really important.

3. Don’t overcomplicate it … break it down

I mean mentally don’t over complicate it. Don’t overwhelm yourself. Break it down and keep it simple. For us, we had several hurdles to cross before actually getting to the peeing on a potty stage which I’ve outlined later on in this post.

4. Don’t go overkill, be sensible

Back to lockdown one, I had tried putting Saajan on the toilet every 30 minutes. Of course, he wasn’t able to make an association as we were putting him on too often. Do you pee every 30 minutes?! Putting him on the toilet every 30 minutes was also really stressful for me. I found myself getting agitated and as a result giving up pretty quick.

When we re-started in December, I started with hourly. He doesn’t have a clear pee/poo pattern. Once he started sitting himself on the toilet, I changed it to every 2 hours and 15 minutes after meal times. 5 weeks later, we no longer need to remind him.

5. No excuses

Ok I’m perhaps braving it by putting this one up here because we are in lockdown at the moment and let’s face it, with a national lockdown right now, there aren’t many places to go! Have no excuses for putting a pull up on once you switch to pants whilst training. When we have been for a car drive (for a cheeky McDs or ice cream as our lockdown treat), I refuse to put Saajan in a pull up even then. Once I had decided that we were going to do this, we were going to do it. I place a toilet training mat at the bottom of his car seat and we crack on. What’s the worst that’ll happen? He’ll wet himself (not going to lie, I do feel slightly nervous when he hasn’t already had a no2!)? It really isn’t the end of the world! In my experience, by switching between pull ups and pants when they’re potty training leads to confusion.

6. YOU know your child best

Despite the various theories you’ll find about potty training, don’t be fooled in to believing “one size fits all” – this is true of even potty training a child with additional needs. YOU know your child best, follow your gut, follow your instinct and TRUST it.

Right, now that we’ve covered the mindset and mental bits, let me share the practical things we did:

  • Ditch the pull ups:  As mentioned above, the sole purpose of the pull up for us was for Saajan to learn to pull his pants up and down. Once he could do this and we were ready to go for it, we ditched the pull ups during the day entirely. I also ditched his bottoms and ensured the heating was on nice and warm. This just saved on extra washing (nd frustration!).
  • Potty: we were given a Heathfield chair by occupational therapy which is like a baby commode. He was given this to ensure his feet are planted on the ground when sitting to help with his posture. We placed this in our lounge so Saajan had access to it at all times. Our bathroom downstairs isn’t easily accessible for him and because he is still a little unsteady on his feet, we didn’t want the added worry of him trying to climb up on to a seat. Upstairs we used a toilet trainer seat in the main bathroom and we place him on it each morning when he wakes up. Whilst training, I’d definitely recommend having the main potty accessible so the child is able to sit on it when they feel to – even if it’s just for the sake of sitting!
  • Caddy: keep a caddy with all the essentials right by your potty/toilet training area. Mine includes plenty of pants, a spare pair of bottoms, socks, wipes, antibac wipes, toilet paper and anti bac spray. Have everything close by and accessible – it reduces the stress!
  • Keep a grid type diary: it’s easy to get fixated on the accidents, focus on the wins! I drew a simple table in a notepad (as shown below) and would complete it daily. Some days where I felt like I was changing pants multiple times a day, the diary gave me a good visual of all the successes we had! Maintain perspective. Don’t let one bad day mean you write the entire thing off (this goes back to the mindset point!). Each time he had a successful trip to the toilet, I would shade the third column in – having a visual really helped and encouraged me to carry on.
  • Reward jar/chart: though pricey compared to the standard reward charts you can get, we went for a wooden poo and potty jar which was recommended by a friend. It was such a brilliant investment as having a clear visual really helped Saajan. He was always excited to place a poo or wee shaped emoji in the jar when he had a successful trip. This jar also helped him with the words “wee wee” (he already knew “poo poo”).
  • A treat: Use an iPad/a phone whatever the heck you need to distract them!
  • Siblings:  Get them involved! There were times where Saajan was more willing to listen to Arjun than us where it came to sitting on the potty. Arjun was very much a part of our potty training journey with Saajan – both in helping and encouraging him but also by celebrating his brother.
  • Role play: There were times where Saajan quite frankly couldn’t be bothered to sit on the potty. What really helped here was the use of role play – we’d get his Peppa Pig figurine or a teddy he liked to play with and ask if they’d like to go to the toilet. He’d get distracted by the toys and taking them and would always sit on the toilet after “taking them” (the antibac wipes come in handy here too!).
  • Alexa: ok, I laughed when lots of you suggested this but my goodness was it a huge help. It helped with point 4 above. I set routines to remind Saajan to go to the toilet every hour – some people may choose to play a song but we chose the option of Alexa saying “Saajan it’s time to go to the toilet now. Good boy”. It meant that I was able to remove one of the stresses from my own head and leave it to Alexa. We use our Alexa for many things but I’ll forever be grateful to her for walking this journey with me!
  • Celebrate:  I mean really celebrate. For Saajan, we’d ask Alexa to play Baby Shark and we’d dance with him. He absolutely loved it.
  • Reward: Saajan loves yoghurt pouches so we stocked up on those and any time he’d ask for one, he was reminded to sit on the toilet. Throughout our potty training stages, he was rewarded with a pouch for whatever we were focusing on at that moment. E.g. when we were getting him used to sitting on his potty, if he sat, he got the reward.

So, here is our timeline for how things went down for us (remember every parent and child is different):

  1. [4 weeks] Learn to independently pull his pants up and down. Due to Saajan’s lower muscle tone, he wasn’t able to pull his bottoms off for a while. From October – mid December Saajan was in pull ups at nursery to practice pulling his pants up and down. That was the sole focus for that duration. The purpose of the pull ups was not for him to learn to use the toilet, it was solely for him to learn how to pull up and down.
  2. [2-3 consistent days] Learn to sit on the potty/toilet for a few moments and learn to flush and wash hands after. Mid December when we decided to whole heartedly go for it, we removed Saajan’s pull up all together and replaced with pants and for the first few days, we simply got Saajan used to sitting on the Heathfield chair. He had been sporadically sat on the Heathfield sometimes but it wasn’t consistent.
  3. [3 weeks] Learn to relieve on the potty: Saajan began getting used to associating Alexa’s reminder to sitting on the toilet. He’d excitedly rush over and sit. The bonus was he’d have his tablet by the toilet to play for a few minutes. When Saajan was distracted, he did his first wee on the toilet a day after removing his pull up. We celebrated so so much and he was ecstatic at our reaction. After this, Saajan began urinating and pooing more frequently but it wasn’t without accidents! When we initially started, Saajan wasn’t overly bothered about being in wet pants – that worried me as I couldn’t help but panic about whether he’d “ever get it”. We had our first accident-free day about 8/9 days after removing his pull up. It wasn’t linear though, we had some days where he’d have several accidents and the odd day where he’d have none. As time went on, and the repetition of what we were doing set in, he became more familiar with the cues from his own body and responding to them. It really helped that the Heathfield chair was accessible. When he was having the odd accident, he’d quickly take himself to his potty, remove his own pants and try and swap them with a new pair before we saw LOL.
  4. [2 days] Returning to nursery: we decided to send Saajan back to nursery in January as he is unable to access the curriculum from home. I was so nervous about how he’d get on as he was still having the odd accident at home. I packed his nursery bag with EIGHT pairs of spare pants! The first day, he had two accidents. But he was fine once he got back home. The second day he also had a couple of accidents but since then he’s not had a single accident! It’s now been 5 weeks since he returned to nursery. This has really helped cement his learning and potty training journey. I replicated a potty jar for him there for them to also use.

It took us approximately 4 weeks to successfully potty train Saajan and we no longer require Alexa’s reminders as Saajan is now able to identify when he needs to use the toilet himself. I was fully focused on the task and once the penny dropped, he did remarkably. It took lots of patience, perseverance and effort but it’s been so worth it! In the last few weeks, he’s perhaps had 2/3 accidents where he’s been distracted or hasn’t quite made it on time but we’re really really pleased with his progress. Next stop … nights!

I hope you found this helpful! Feel free to share with anyone else that may benefit!

Other resources: A really great Facebook group called DSUK Going Potty!

Disclaimer: This post includes affiliate links where I make a teeny tiny commission from any purchases.

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