I get a lot of questions about Nate, but I think the question I get asked the most (especially from people who are not an immediate part of the Autism community) is: "he's almost 5 years old, shouldn't he be potty trained by now?"
My response: "I mean, typically, yes. But he's not, and I'm 100% okay with it."
Is it frustrating to have to keep changing diapers (especially since my 7-month-old daughter is ALSO in diapers)? Absolutely, sometimes. Nate's poops still make me either cringe or laugh. Do I make him feel bad about it? Absolutely NOT.
My step-son is potty trained. He picked it up pretty quickly. He wears underwear during the day, and is still in diapers at night. My friend is currently potty training HER 3-year-old. We all know that 3 is typically the age where they can comprehend the feeling of needing "to go" and can learn to use the potty. For Nate, at the age of 3, we were just learning of his Autism diagnosis, and had WAY more pressing things to figure out and learn and teach than using the toilet.
Nate is now almost 5, and showing NO signs of wanting to actually learn to use the toilet.
We did try, really hard, at the beginning of 2023. I attended a toilet-training seminar for ASD kids (thank you so much Thames Valley Children's Centre for the resource) where I got to ask questions about how to approach a step in the learning process that I felt wouldn't resonate with Nate. After the seminar, I felt pretty confident we could MAYBE do it.
The most important thing to remember is that if you try to potty train before they show signs of being ready, you're gonna end up with one pissed off kid. It'll stress them out, and cause a negative reaction to using the toilet. If you push too hard, or negatively reinforce accidents, the same result is going to happen. Nate was showing signs of being interested. He hides somewhere private when he needs to poop. He doesn't like the sensation of peeing. He pulls at his diaper after he's peed because he doesn't like the wetness. So I thought, you know what? Cool. Let's try.
With Nate, it's difficult because he is non-verbal and we don't currently use a concrete form of communication (such as PECs or an AAC device) with him. Nate and I have a.... special way of communicating... which the only way I can describe it is: I know my son. My biggest obstacle was going to be figuring out a way for him to let me know he needed to go to the bathroom. With time, I know he'd learn to hand-lead me to the bathroom, but for the teaching process? Shit. What was I going to do? So I opted for printing off a picture of the toilet, and encouraging him to grab it and bring it to me when he needed to go.
We started by ONLY changing his diaper in the bathroom for 2 weeks. After every bathroom-diaper change, he got a Smartie. He LOVED this, and after a few days, he stopped protesting laying on the bathroom floor for a diaper change.
Eventually, we moved to taking him to the bathroom every hour. If he sat on the potty for 2 minutes, without getting up, whether he used the toilet or not, he got a Smartie. If he DID pee, he got 2 Smarties. If he pooped, we had a bucket full of fidget toys that he could pick as his "reward."
The first few days of having him sit on the potty were HARD. He screamed, he cried, he got mad. It broke my heart, but because I didn't want to push him when he was obviously uncomfortable, I'd let him get up. As such, he didn't get a Smartie (which of course just pissed him off more).
We kept going like this for a while. We switched him out of his pull-ups to training underwear to try and encourage him to want to go to the bathroom. Nope. I was cleaning up pee and poop off my floors every freaking hour.
Admittedly, after a few weeks, we got lax with the schedule. I started throwing him back into pull-ups. I started skipping bathroom visits. Eventually, we just went back to him being in his pull-ups full-time. He was happier. He lets me know when he pooped, or when his pull-up is making him uncomfortable. I've decided that's what works best for us. At school, they take care of him just the same.
The issue I'm running into now, is that he has started pooping up his back. Leaking through his pull-up. Both things that happen when your kid is growing out of that size. The shitty thing? He's in the biggest size of pull-ups they make (5T-6T).
I know companies have started making size 7 and size 8 DIAPERS (you know, the typical diaper with the tabs on the sides). Nate HATES those. And I don't want him to feel discouraged by putting him back into DIAPERS. At least his pull-ups, he gets to PULL UP like normal underwear. I feel like that gives him a little bit of "dignity" and I don't want to take that away from him.
I did some researching, and most of what I found was moving him into youth/small adult diapers. I am no stranger to these. Adult diapers were my best friend after I had BOTH my kids. I would proudly tell my husband I was rocking a diaper on a particularly uncomfortable day post-birth.
For some reason though, the thought of moving my sweet boy into adult diapers just feels like a slap in the face. You may disagree, or may think it's not a big deal - and that's totally valid. But for ME, I just feel cringey about that thought.
So ASD parents - I do not see potty training in our near future. I also don't want Nate to continue feeling uncomfortable leaking through his pull-up. I also don't want Nate to feel like he's taking a step back by putting him back into DIAPERS. Does anyone have any suggestions? What has worked for you? Are there any brands you've found that you love?
Please help this Mama out!
XO
The Spectrum Mom
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