Susan's Blog

Monday, June 25, 2012

Autism Mommy Swami #11: PTT or Potty Training Trouble

Dear Swami,

I am SO FREAKIN’  frustrated with potty training. The ‘special ed pre-K teacher who has been doing this for years’ is DOING THE SAME THING OVER AND OVER (the definition of insanity) to try to get B to pee on the potty. There’s alot of info out there. We are struggling. We also have 11 and a half year old dogs who are struggling with potty & a 6 year old who cries “Will you wipe me now? ” No. please. At least he can ask. At least he was easy to potty train (when awake) I’m just waiting for my husband to need help. Oy and Vey. I have  BCBA behaviorist person consultant who gave me a chart to put his progress on.  Wants me to spend hundreds on a potty alarm for his pullups. There’s barely any progress! Did you have trouble potty training Nat? Just curious. Many have no problem at all potty training their kids falling somewhere on the spectrum. I do.  No rush on this, but thought I would ask.  You know…they make diapers for very tiny ones and big old adults but not many options for the in betweeners. Running out of time????
Thanks so much!


Dear Jewels,

Potty training is the worst. Just the worst. I had trouble training two out of three of my sons —  and it was awful. We had years and years of #2 accidents way after they had peeing down, and I had no idea what to do, despite a lot of expertise around me. Never heard of potty alarms, what will they think of next? That sounds scary. No, all we had was a Cabbage Patch kid fake little toilet that actually made pee sounds when you pushed down on the seat, and it could make a flusher sound, too! It kept at least the Swami entertained for hours. We had books — mostly really stupid boring ones that also didn’t work, and we had reinforcers galore. Every day he would go the window in his room, look out, and drop one in his pants. Even with the potty and me right there. It just wasn’t happening.  By the time Nat was five, I was at my wit’s end.

Then we went to Disneyworld and when we got to the hotel, I showed him the ultimate reinforcer: the Cadbury chocolate creme egg.  (By the way, this is all in my first book, Making Peace With Autism.) I then showed him the bathroom. I said that when he pooped in there, he would get the egg.

He went in and pooped in the toilet, first time. Got the egg, and after that, forevermore.

Was it that it finally sunk in? Was it the extra great reinforcer? Was it the new environment? Was it that he is so literal, God bless him, that he thought I was telling him to go and do it right then and there! Or was it that some neuron fired?

Or was it that he was five, not 2.5 or 3.6 or whatever the damn books say we should be when we are at last willing to let go of what feels like a part of ourselves? It’s hard for me to believe that any of us get toilet trained! But here’s the thing: developmental disorder/delay means developmental delay! AKA some things will take longer!!!!  So can’t we wait until a child is developmentally more ready?  I don’t think enough can be said about developmental readiness, of late blooming, of late intervention. Everyone does early intervention, and that’s great, but if it doesn’t take at that point, then what? People still think there’s a tiny window of brain elasticity until 5, or 10, or whatever, and let me tell you, that just ain’t true. Our guys are often late bloomers. Yet the schools and daycares insist that they be potty trained by a certain age. Whatever happened to accommodations? And by the way, didn’t Freud tell us way back when not to be too hyper about potty training?

You can see that I have little or no expertise in this matter, I am only answering as the Swami, which means I am consulting my own experience with my own children, which happens to go pretty far back. The part that the Swami can help with is encouraging you to consult yourself for the truth, to go with your own gut and expertise about your child. In my experience, charting stuff had its place — like when I was a kid and quit sucking my thumb using a turtle calendar I drew — but that’s not what worked for us. Probably some combination of coaxing, guilting, some show of my impatience, and much rewarding is what did it. But I just don’t know.

I think that the best thing the Swami has to offer you is to see that all things pass — literally and figuratively. So keep that sense of humor I see in your letter, keep talking to experts, read, ask other moms, but the thing is, to some degree, children do what they do and usually they figure it out eventually.




My son is a low-verbal, moderately autistic 9 year-old. He was finally completely toilet trained at 6 years old. We used Good Nights pull-ups for his diapers after he grew out of the largest size of regular diapers. Those things hold a lot! I’d buy them like mad when they went on sale. It was expensive, but that was what we had to do. Hang in there Jewels.

— added by Melody G on Monday, June 25, 2012 at 7:27 pm

I had a really truly awful time trying to potty train my son as well. I thought I would go crazy. (We also had an elderly incontinent Labrador retriever at that point too, so I can very much relate to your pain!)

My son, at age 4.5 just finally one day (Christmas day, mind you) up and did it on his own and was after that fairly good. Before that he said he couldn’t tell when he had to go. It was only after several months of OT that he started saying things like “I can tell I have to go now” (though he still at first didn’t go). So, maybe OT if not already tried.

Also… regarding pull ups/ diapers for larger kids… ordering larger sizes used to be easier and cheaper w/ subscribe and save via Amazon (and I could find sizes there I could not find locally). Also, local hospitals and home medical supply places do have sizes that fit kids though they are pricey.

Hoping something helps soon…

— added by Khrys on Wednesday, June 27, 2012 at 9:55 am

Our daughter with (SPD) trained easily for urination but, struggled mightily with bowel withholding. Despite endless (did I say endless?) Google searches and countless calls to our pediatrician, none of the recommendations produced the desired results. Adding to the frustration was the lack of printed material dealing with this particular potty training problem. We were introduced to a fabulous book available on “I Can’t, I Won’t, No Way!” A Book for Children Who Refuse to Poop. Written entirely from a child’s perspective, it has gone a LONG way in helping our family.

Further, for those of you dealing with wetting problems (day and night), check out the blog (and book) It’s No Accident written by Steve J. Hodges, MD. A pediatric urologist in practice at Wake Forest Baptist Hospital…Dr. Hodges has conducted research indicating that accidents are caused by undiagnosed constipation/withholding.

Hope this information proves helpful…

— added by Naples Mama on Tuesday, July 10, 2012 at 7:14 pm

I know this comment is late but I am writing it anyway hoping someone benefits from it. I have been thru this w 2boys(1w/ASD) and I’ve found many of the common suggestions are just BS & will have little effect on those who haven’t gotten the hang of it already. Clearly it’s not as simple as a freakin sticker chart or m&m per poop! Lol so here’s my advice:
1) Forget those Lil cute noisy singing potty’s! Start w the reg toilet!! Not only will u then have to teach twice-first potty/then toilet…but also it’s SOOO much easier eliminating the step of washing the removable potty insert-what a pain in the ass that is!
2) ppl say oh just put them in underwear-throw out the diapers&pullups….No not for all kids. Some kids need to get used to underwear slowly. Both emotionally&physically. It’s a safety net for some, a sensory thing for others. What we did: started w underwear for a specific time period of the day startin w like 2-3hrs at a time. Best IMO, after dinner. We knew he’d poop after dinner, so once he did (in the pull up) we let him stay naked until bath time. After a couple weeks of that we introduced the underwear(fave character)to wear during that time only. We expected them to be full of pee soon thereafter so showed NO dissapointment. It was “for fun”. What got my son trying to keep them dry as long as possible was that he did not want to get pee on Optimus prime or bumblebee’s face. Lol (transformers obsessed) I was lucky thou they made underwear w his special interest on them. Theres SOOO many diff kiddie character choices & it is worth it to find ones they care about.
3) Transition slowly-dont rush them-they sense the anxiety!! So we went from underwear a couple hours Aftr dinner to underwear during the latter half of the day at home to underwear all day when we stay home. All other times in schl, store, out for the day,etc-PULLUPS! Hello public toilets need a lot of gettin used to-that’s last when they got the hang of it at home. Another thing that’s last-night time training! Not the same as daytime & we contd nighttime PULLUPS 2.5 more yrs in which they slowly became drier & drier in the morning. At 6now (pee trained at 3y10mo) he’s just now ready for underwear at nite bc for a good 4mo now PULLUPS r 100%dry in morn everyday& goes to toilet himself right away.
4) Don’t bother making Lil boys sit to pee!! It’s a skill in itself for them to learn how to “hold it down” correctly & at first it’s a lot to remember when theyre just tryin to make it to bthrm in time.
Plus, eventually boys need to learn to stand to pee anyway. Guess what? They use urinals in the school bathroom in Kindergarten. Start them standing and aiming for the hole at home & use a stepstool if ur toilet is too high. Make it a game to aim for the “target”-u can use a Cheerios or front loop.
5)Most ppl don’t realize but for kids who r struggling w num 2 it’s prob not just as simple as offering incentives or rewards. There may be more to the story if they’re having messy poop accidents all the time or not going when they need to due to withholding. My son was a withholder. He was always constipated & at times severely so. Since a baby he had constipation issues. He’d go in his PULLUP later on after we had just sat on the bowl trying. He held it as long as he possibly could for fear of having to push bc pushing=pain. (he told me this much later on once he talked & cld communicate clearly) Holding it in bc ur afraid it’s gonna hurt is not good & only prolongs the constipation & pain. What happens is-the kid can only hold it for so long, eventually it’s gonna come out on its own. That’s what they wait for & when it finally happens to come out w/out pushing, it usually happens unpredictably fast, wherever they r at the moment, in the pullup. We knew we had to get him regular & soft. We tried extra fiber. Not enough. We tried prune juice. Worked but temporarily. We looked at his diet. He was a carboholic. (so am I lol) We added more fruit&vegetables. He started to go a Lil softer & more often. He had successful poops in the toilet often, enough to make the switch to underwear 100 % of the daytime. He didnt resist tryin to push anymore bc he knew it wasnt gonna hurt anymore. But it was still very unpredictable. There was no telling when he’d have to poop & if he was busy on the playground, playing toys w kids, even sitting for story time… he would not stop the activity to use the bathroom. He’d just do it in his underwear & wait til HE was finished what he was doing, then ask to get cleaned. He didn’t wanna waste fun time sitting on the toilet. Why? BC for him, sitting was difficult. He had to go go go! He was pretty hyperactive at that time. Sitting to do an activity for longer&longer were always goals worked on w the OT. So basically, his shit didn’t come out fast enough for his liking. Lol He was right, it did take a while for him. He had to sit abt 5-10 min and although it didn’t hurt like it used to, it still was uncomfortable for him to sit,push&wait. ESP w mom hovering & waiting to wipe. That’s when we looked into a change in diet. We went GFCF cold turkey one night & haven’t looked back. Prob best decision I’ve ever made for him. He was never crazy picky but he did crave those foods w gluten & casein so it was interesting that once he got accustomed to his new diet he didn’t crave them anymore. His love of fruit was born, he tried every new food offered&liked 95% of it all. After about 2wks he was much calmer. After 1mo he started sleeping better. After abt 6wks, his bowels started to change. He started to go even softer & so much more at a time. He started to go regularly where we could predict 99% of the time when it’d be based on his daily bathroom habits.We knew he’d have to go within the hour after eating breakfast & sometime after dinner but before bath time. Everyday. Like clockwork. Then he even started going first thing in the morning everyday also. I couldn’t believe how much needed to come out of this Lil boy everyday!! When I thought about the amount of waste sitting in his body that needed to come out but wasn’t, it all started to make sense. The addition if supplements and ESP probiotics, really kept him regular like clockwork everyday. It helped him understand & take control of his own body. He was so much healthier overall& knew exactly when he needed to get on that toilet, so no more poop in the underwear!!

— added by Momofboys on Monday, July 23, 2012 at 7:16 pm