Struggle to toilet train my 5 yo daughter with severe autism

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johnle
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25 Jul 2024, 1:23 am

My daughter has severe autism and almost non verbal. She has about 30 words but only say them randomly. She is still wearing diapers and still not bothered by soiled diapers. I am trying to take her to the toilet every hour but most of the times she doesn't go in the toilet. Occasionally, may be only 10 percent of the times, she goes in the toilet.

I try to act excited, give her candies when she goes in the toilet but she is still unable to connect sitting on toilet to urinate or defecate. In the stores, the largest pullups I can find is 5/6. In about 1 year she will outgrow them.

My wife and I are so stressed out over this. Could you please give me some advice?



timf
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29 Jul 2024, 4:23 am

Our daughter had a problem with night time urination until she was about seven. We found a product that had wires and a battery that would detect moisture that she would wear and help her wake such that she got some feedback that helped her learn to pay attention to the signals as to when she had to go.



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16 Aug 2024, 1:32 am

All of mine (I have several...) have been older when they toilet train. Six years old was the earliest (my nonverbal kiddo, surprisingly), and 9 years old is the latest, so far.

One of them recently told me that he can't feel anything immediately before the need arises. He can feel everything come out *as it's happening* (which is good, even if it's technically too late) but nothing beforehand. Which is a tough one.

I have no idea how big pullups are (due to genetics, my kids are all on the smaller side, and I've been fortunate that size 5 diapers still barely fit around their waists at age 9, and they typically weigh ~60 pounds), but would a larger size 5 or 6 diaper be a possibility, you think? Just to buy you some more time and ease the stress a bit? Or maybe line her underwear with a super heavy overnight maxi pad. That might be an option, too.

Also, does your wife allow your daughter to be in the bathroom with her? I have an open-door bathroom policy with my kids, which I think (hope?) helps.



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16 Aug 2024, 3:42 am

johnle wrote:
My daughter has severe autism and almost non verbal. She has about 30 words but only say them randomly. She is still wearing diapers and still not bothered by soiled diapers. I am trying to take her to the toilet every hour but most of the times she doesn't go in the toilet. Occasionally, may be only 10 percent of the times, she goes in the toilet.

I try to act excited, give her candies when she goes in the toilet but she is still unable to connect sitting on toilet to urinate or defecate. In the stores, the largest pullups I can find is 5/6. In about 1 year she will outgrow them.

My wife and I are so stressed out over this. Could you please give me some advice?


Is she maybe afraid to let go of the poop? I have heard some kids don't understand that its waste at first so they may freaked out its part of them leaving...like idk is she anxious about it, or its just taking some time for her to learn? But if she has anxieties about going to the bathroom some of those may need adressing. LIke idk my little brother for a while was afraid to go to the bathroom by himself cause he was afraid a man might come out of the toilet so as a little kid he always wanted someone to stand outside the bathroom while he was going so if a man did come out of the toilet he'd have help.

But also I remember it took a while for him to get over that, but yeah idk if your kid is like afraid of goinig for some reason she may just need some encouragment and to use a comfortable bathroom on her own a few times so she feels more comfortable in a public bathroom. But also she may need to be taught that its natural to poop and healthy, so she should not feel bad about doing it when she needs to. Idk I remember as a toddler my parents got me a few picture books about poop, to help me understand why its important to use the toilet and idk they were toddler appropriate books that juust kind of helped explain pooping so maybe something like that could help your kid. Even if they are non-verbal some of the pictures might help. But also somtimes nonverbal kids can still read


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Sweetleaf
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16 Aug 2024, 3:47 am

Sweetleaf wrote:
johnle wrote:
My daughter has severe autism and almost non verbal. She has about 30 words but only say them randomly. She is still wearing diapers and still not bothered by soiled diapers. I am trying to take her to the toilet every hour but most of the times she doesn't go in the toilet. Occasionally, may be only 10 percent of the times, she goes in the toilet.

I try to act excited, give her candies when she goes in the toilet but she is still unable to connect sitting on toilet to urinate or defecate. In the stores, the largest pullups I can find is 5/6. In about 1 year she will outgrow them.

My wife and I are so stressed out over this. Could you please give me some advice?


Is she maybe afraid to let go of the poop? I have heard some kids don't understand that its waste at first so they may freaked out its part of them leaving...like idk is she anxious about it, or its just taking some time for her to learn? But if she has anxieties about going to the bathroom some of those may need adressing. LIke idk my little brother for a while was afraid to go to the bathroom by himself cause he was afraid a man might come out of the toilet so as a little kid he always wanted someone to stand outside the bathroom while he was going so if a man did come out of the toilet he'd have help.

But also I remember it took a while for him to get over that, but yeah idk if your kid is like afraid of goinig for some reason she may just need some encouragment and to use a comfortable bathroom on her own a few times so she feels more comfortable in a public bathroom. But also she may need to be taught that its natural to poop and healthy, so she should not feel bad about doing it when she needs to. Idk I remember as a toddler my parents got me a few picture books about poop, to help me understand why its important to use the toilet and idk they were toddler appropriate books that juust kind of helped explain pooping so maybe something like that could help your kid. Even if they are non-verbal some of the pictures might help. But also somtimes nonverbal kids can still read


But for sure there are picture books for kids going though the diaper to underwear stage so maybe getting her some of that content would help, like could be she is nervous about moving up from diapers.


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SocOfAutism
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19 Aug 2024, 1:16 pm

I hate to tell you this, but I think you need to try cloth diapers.

Any premade diapers are made to suck the moisture away from the skin. This helps the person not get diaper rash or bedsores. But in the case of a small child learning, there isn't an uncomfortable feeling letting them know they need to go to the toilet or clean up.

Once you get her into the routine of going to the bathroom when she is wet or messy, she can start to connect that to going BEFORE she is wet or messy.

It will take time, but it will happen.

My little brother was around your daughter's age when he stopped using diapers, and it was cloth ones that did the trick for him. This was 30+ years ago.



Devoted
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26 Aug 2024, 2:50 pm

SocOfAutism wrote:
I hate to tell you this, but I think you need to try cloth diapers.


This isn't a bad idea!

Cloth has come a long way in the past 20 years. There are a lot of options available. I prefer old fashioned cotton prefolds, with fasteners that aren't poky like the traditional pins, and waterproof plastic pants over everything. But there are all-in-ones and pocket-style, too. If you have your own washing machine on-site, then it's worth giving it a try. I wouldn't invest too much in them at first, just in case your little one rejects them outright.

Be warned that any material that isn't cotton may cause irritation, either due to skin sensitivity or difficulty in properly washing the fabric (some fabrics are more high maintenance than others).



SocOfAutism
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29 Aug 2024, 7:37 am

Devoted wrote:
Cloth has come a long way in the past 20 years.


I'm glad to hear this! Yes, please note that my knowledge is out of date! I know cloth diapers help a lot, but I have no idea what is available now. OP, please check out what Devoted has said.