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Suit Up for Autism Toileting Success

Toilet house
What our homes can feel like, when toilet training our kids with ASD.

By Cathy Jameson

We've hit a snag in the clothing department.  Ronan has plenty of clothes, but about a month ago, Ronan preferred not to wear them especially the ones that cover his nether region. During this de-robing phase, it wasn't just his clothes he was taking off—it was also his diaper that I’d find on the floor.

At first, I thought maybe we had some defective diapers.  The Velcro tabs weren’t sticking as well as before.  But then, the longer it went on, it seemed like a game for Ronan:

Get undressed.
Saunter casually passed Mommy.
Watch Mommy's eyes widen.
Walk away as if being naked was a normal and acceptable every-day activity.
Then, watch Mommy run all over the place to find what’s been left behind.

The faster I’d leapt to my feet to find Ronan's clothes, I realized that Ronan's game wasn't over.  I'd find his clothing and diaper, which was dry, but Ronan wasn’t done having his fun.  He’d finish the game with a laugh after fighting like the dickens while I attempted to get him dressed again.

This happened every few days.  Then it began to happen every day and several times a day.  Then it happened on a day we had guests over.  New guests.  Who'd we never met before.  Thankfully, the guests were aware of Ronan, the autism, and the need for diapers, but imagine my horror as in walks a half-naked Ronan to the dining room where we were sitting and chatting.  To say that I was mortified is an understatement.



A few days after this back-and-forth clothing on/clothing off activity, things finally subsided. Ronan happily kept his clothes on with no issues.  All was fine.  Until I breathed a sigh of relief. 

That was when Ronan changed things up.  He decided that daytime undressing was not as exciting as night time undressing.  Night time undressing was much more fun especially when he saw that Mommy's eyes got really, really wide.  And when he saw that she moved really, really quickly.  This, plus having to do multiple loads of laundry daily and now nightly, went on for days.  And days.  And days. 

When the night time undressing wasn't the short-lived phase I'd hoped it would be, we had to get a little serious.  We told Ronan that the diaper stays on.  Unless it's wet.  Then it comes off, but please, tell Mommy or Daddy that it's wet and we'll change you. 

Getting Ronan to understand that concept wasn't sinking in though.  And the thought of how many more wet spots we'd find on his bed, on his bedding, and on the carpet made me sink into despair.  After crying, because some days you can't help but cry, we got back to work.  We figured out how to keep Ronan dressed through the night, but we were forced to take ten steps backward. 

Years and years and years ago, a dear friend modified zip-up footed jammies for Ronan.  They were the kind of pajamas that had a zipper that went from the ankle all the way up the front of the pajamas to the neckline.  Ronan had worn those zip-up jammies for quite some time.  Until he figured out that he could unzip them.  Which meant he could undress himself.  Which meant he could remove his diaper.  Which he did multiple times.  Which is why we needed backward zip-up pajamas.  Which is why our friend modified the front-zip jammies.  Which helped. 

But that was years ago.  Ronan’s outgrown those pajamas.  And when that happened, I’d hoped he’d outgrown the need to have that type of pajama forever.  But here we are again.

Finding front zip-up pajamas in Ronan’s size to modify all those years ago was easy.  From when he was in 3T through size 6, most department and big box stores carried the sizes we needed.  But to find Ronan’s size now, and to easily make the modifications we’d need to do to them, was proving fruitless. 

Countless loads of laundry later, and one more search on Google, I found a solution.  I typed 'autism backward zip pajamas" into Google,  and waited for a package to delivered.  Ronan wasn't thrilled to see the long, leggy pajamas arrive, but with encouragement from the siblings....

Ronan PJs

…we found success!

I'd love to report 100% success and that my washer and dryer have had a break from washing multiple pee-soaked sheets, blankets and Ronan’s backward zip-up pajamas, but with as everything we have experienced, we ran into regression. 

Ronan kept his pajamas on for about 3 weeks.  What a honeymoon period that was!  But, he started to cinch his diaper off in the middle of the night—even with the pajamas on.  He also started to take his diapers again during the day.  I realized something one afternoon, though, after picking up the 5th diaper, a wet one.  Maybe Ronan doesn't want to be the diaper because he can finally feel that the diaper is wet!  Never have I ever been excited to see a wet diaper on the floor.  So, we embark on another phase—toilet training.

I know it won’t be easy—not much has been for us lately, but wish us luck as Ronan, aged 12, tippy toes toward toileting training.  Maybe it’ll lead to a new milestone and to some independence.  Independence.  I’d love to see Ronan experience a streak of that.

Cathy Jameson is a Contributing Editor for Age of Autism.

Comments

Cathy Jameson

Thank you all for sharing your own experiences and for giving me some toilet training tips. I appreciate the positive responses and the encouragement!

xo, Cat

MrsP

We did the backwards zip PJ thing but we had to literally sew the zipper shut as my little darling discovered she was double jointed enough to reach behind her to unzip.

And we 'fixed' the removing the diaper from under the PJ's by literally duct taping the diaper all the way around.

Oddly enough, my 75yr old mother who taught 3rd grade for 30 years until the mid 90's doesn't remember all these kids either. They probably hid them in a broom closet or something. She doesn't remember all the anaphylactic kids or the t1d kids or the poor cancer kids either.

AutismGoAway

Our son has been doing this for a while at night and then started doing It during the day. It's partly a sensory and partly an adolescent thing. Not fun! And I'm hearing you on the laundry!

Jeannette Bishop

Wishes for much success for you and Ronan!

Denise Anderstrom Douglass

Do not give up! My son had an 8 foot stockade fence installed around the back yard, and dead-bolts on the other exits. When my grandson was 8 he had been walking through the house naked and letting himself outside in the back for ages (naked even in the dead of winter in Massachusetts.) His mother left that Labor Day weekend, and, I believe it was around the age of 10 or 11 that my son succeeded in the toilet training. Now, at 14 and over 6 feet tall, my grandson still occasionally appears in the living room or kitchen stark naked, but he can shower himself, is toilet trained, brushes his teeth, and now has learned to shave with an electric razor. People who have not lived with it just don't get it. Where are the senior citizens my age who flap their arms, have meltdowns, and go naked in the snow? Better diagnosing, my a**!

Hera

My heart goes out to you and Ronan; hope the potty training thing works for you.
Had some issues with potty training too. We used a malem ultimate potty training alarm attached to a pair of cotton undies inside the diaper ( cotton undies so the alarm could sense when he wet, diaper on the outside to prevent changing the sheets) for our oldest who did not wake up at night for years. We had to wake him and walk him to the bathroom when the alarm went, but eventually it worked. My second son did not seem to feel it when it happened even when he was awake, so we did something similar with the alarm attached to his clothes.
We used it initially so we knew when he had started to go, and could bring him to the bathroom, and eventually he figured it out too.
All our kids are different though; I could imagine for some the buzzing or vibrating could be a sensory overload, so this might not work at all for you and Ronan.
Wishing you success!

Pam Byrne

Cathy, we also went through the stripping phase and toilet training for ten years, using every method known to man to get my son to use the potty. Finally, shortly before he turned 13, he got it. He's pretty much been clean and dry for more than ten years now. I think B12 shots healed his nerves so that he could feel the urge before he had an accident, or it could have just been a matter of getting tired of being wet and dirty. Praying that this is your time for success because I know how tiring it is to do laundry constantly and clean up a big kid. Looking forward to reading your success story!
Take care,
Pam, Alex's mom

Allie

Is it possible that this means that he has some emerging understanding of toilet-training, and that's why he wants his clothes and diaper off?

My neurotypical daughter was pretty much toilet-trained by 20 months--but that was at EXACTLY the time I had to do a work trip that involved 6 weeks of travel in Europe, and I was bringing her with me.

I thought I'd KEEP her toilet-trained but put her back in pull-ups just for safety, to avoid disasters-on-the-run.

But what happened was, she couldn't tell when she was wet, and she lost her ability to stay dry. It took literally years to fix that, even though we only used pull-ups for a month or so after that trip.

With our autistic son, we did have EXCELLENT results from 2 things:
1) we took him out in the (very private) back yard with no clothes on for an hour at a time, so he was able to both feel and see what happened when he had to pee.
2) We bribed him to sit on the toilet/potty several times a day, especially when he was reluctant to poop.

I know, they're all different, so what worked with ours will not necessarily work with yours.

MamaBear

When I was pregnant with my third child (3 kids in 3 yrs!), I realized that I really should toilet train my 2 older ones before the baby arrived. Nothing had worked so far, especially with my son. I went to the expert, my Mom. She recommended stripping the kids to bare bottoms, then confining them to the linoleum floor where spills would be more easily cleaned. Voila! My daughter easily learned that pee running down the leg was hugely uncomfortable. The boy took a bit longer until his dad took him into the bathroom to "show" him. Many giggles and manly laughter later, the boy was trained.

Ronan may need to actually see someone, preferably male, using the commode. Now you just have to find a willing male 😊

go Rand

When our son lost all his bathroom skills at 18 months, we tried to retrain him by giving him three M & M's if he would simply sit on the toilet at each half hour.

Seems it took at least a year or two for it to sink in... but it finally worked...

theresa 66

Good luck to You & Ronan, We did the pj thing ( just cut off p.j. feet & put on backwards ), years ago. But our child out smarted me yet again, by doing a Houdini and somehow getting the diaper / pull up off without taking p.j.'s off. They are amazing kids sometimes. When I first read this post I thought he may want regular undies, or there is an infection/ irritation of some sort. I hope that You figure it out and that at least one thing gets crossed of Your wish list. It sure is a relief to have ours potty trained. People with non-speical needs kids don't/ can't understand.

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