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Potty Training and Toe Walking... Are They Related? UPDATE May 2005: For several months, Zachary had a "re-lapse" in his potty training. He was still fine with doing his pooh in the potty, but regresses in peeing. Our family had a very turbulent year this year... moving/re-locating a couple of times... Zachary's father was also away several months at a time for training/work purposes. This was very difficult on Zachary. I debated whether or not to post this because I knew this would only be a temporary relapse... however, the reason I decided to post it was because of something I found rather interesting in "how Zachary came to be re-potty trained". We had gone for a trip to pick up a new Australian shepherd puppy. It was a 12 hour drive one way... we drove the entire trip in just 2 days... there and back... 24 hours of driving. Zachary loved it because it allowed him to go through Chicago... lots of trucks, trains, planes, excavators for construction, etc. to look at. He did GREAT on the trip... except for one thing... which had always been a problem on trips... getting him to go into a strange bathroom. I first noticed this issue with him after trying to get him into a gas station bathroom long ago... the door was EXTREMELY SQUEAKY... and Zachary absolutely hated "squeaky doors"... after that... "roadtrip bathrooms" became a problem... He always hated the "time to go potty" while on a trip. Well... on this particular trip, I told him he could "hold his pee" ... and incredibly... he did... He didn't pee once in his diaper at all... during the entire 24 hours on the road... When I knew there was no way he could still hold his pee (after say about 6 hours on the road), we would pull over for a "pit stop". Since he loved diesel trucks, I told him to use his penis as a diesel fuel hose to use to "empty his load"... (what parents will do to overcome this potty training issue... ). Anyway, when we did stop while on this trip, his sister would have to go to the restroom first, and come back and tell him "Zachary... there's no squeak..." and then, he'd be a little more ok with going in... Having held his pee for so long, when the opportunity to use a restroom finally did come, he was easily able to "dump his load". The reason this was interesting was because the day after we got home, he once again decided he would hold his pee... and then, during the day... all by himself... with absolutely no prompting on my part or that of anyone else... he just once again started to pee in the potty by himself! Allowing him "hold the pee" was key in finally getting to use the potty again! Something I just wanted to share with other parents in case you also experience any "relapses" because our first thought is often to "get them to go several times in short time periods" and maybe we should be doing the very opposite and encouraging them to hold it a little more to practice doing that and force the use of those muscles a little more... and that may be the key that allows them to "feel it coming" a little more and allowing them more "control over turning their hose on or off"! Looks like we are fine once again! UPDATE June 2004: I am happy to report that Zachary is finally potty trained (at almost 7 yo... trained in June 2004, he'll be 7 on Aug 12th, 2004). When I finally decided to "try again", it turned out to be much easier this time around. I had noticed for a while that he was bothered now when soiled. He would stand up instead of remaining seated at the computer if ever he soiled himself. My brother-in-law had helped us to put in a wood floor in the living room. I knew that taking the diaper off would be key for Zachary. Sure enough, as soon as that new floor went in and I tried again, Zachary was somewhat stressed when he had "no diaper" and when it was time to go, he looked for "a place to dump it"... and this time, he did go to the potty and use it. I knew that he very much loved trucks. He often stated that he wanted to be "a trucker". So, I told him I would buy him "trucker underwear" that he would have to keep clean. I think that was a huge motivator for him. I also told him that truckers do not poop in their pants... they use a potty to keep their trucks clean. Luckily for me, when I went to the store to look for "trucker underwear", Hanes had just put out a new "pattern/design"... and it was exactly what I needed. :o) Zachary was thrilled to have "trucker underwear"! He still had a few accidents, usually when really captivated by what he was doing at the computer. Interestingly, visual processing and somatosensory processing are co-located in the parietal lobe... it was almost as though his visual processing greatly over-rides his somatosensory processing... when busy on the computer, he could just "forget he had to go" or he would "wait until the last possible moment". A few reminders helped a lot. I did not have to use timers or anything though. He also wakes up dry now... pretty well all the time... and so, for him, when ready, he was "really ready" and so there was really no "nighttime issues"... at least not so far. Traveling has also proven to go well... he can hold it until we get to a rest room. I now have dad take him into the men's restroom... I called it the "trucker's bathroom" and so he was thrilled to try it out even though it was totally new for him. So, looks like this is one issue we can FINALLY put behind us! Thank you, Lord! :o) END OF UPDATE This is the one I've struggled with... At 5, Zachary has yet to be potty trained... although the writing of 2 books and the creation of my web site, all in approximately 10 months has made it so that I haven't spent the time with him I should on this issue... I'm hoping to do so shortly. I can get Zachary to do a "big boy pee pee" on demand (he still won't just go by himself when he needs to), but stools are still a huge issue for him. I know that Zachary can "sense" when he needs to go relieve his stools. I don't know if he can do so as easily for his urine. For example, in the past, I've waited quite a while for him to go potty and do a "big boy pee pee". On one occasion in particular, I decided to let him "off the hook" and just wash his hands before leaving the bathroom without "having gone". I had just finished asking Zachary if he "needed to go" and he answered "no". Within seconds of turning on the tap to wash his hands, Zachary started to pee on the floor by the bathroom sink (I had made the mistake of not putting a new diaper on right away :o) ). As soon as Zachary realized he was "peeing", he turned around and headed right back to the potty... standing in front of it in an attempt to finish up there. Needless to say, I wasn't that fortunate since once he started to pee, he had difficulty holding it in to make it the few steps to the toilet. Thus, I've always wondered if he can really "feel" his urine coming. I definitely do know that he can "feel" the stools though. He always has "that look" and does the "stop in your tracks and push" when he needs to go. So, I know he can "feel" that. The interesting thing, however, is that even though I know for a fact he can "feel" his stools coming, even if I'm lucky enough to put him on the potty before anything "comes out", Zachary simply will not "perform" even though he was perfectly ready to go just prior to my putting him on the potty. I've waited up to 2 or 3 hours, hoping that if he just "went", he could get used to it. But, Zachary could "wait me out" until the next day if he had to. He simply refused to go! And, of course, after having waited even several hours, eventually I would break down and finally let him off the hook. I was so determined to finally potty trained him, for a while I actually had a tv and vcr in the bathroom. We watched countless movies there. Worked on countless flashcards and other exercises. I tried the stickers as rewards, the clapping of hands... everything...but, still, regardless of what I tried, Zachary simply refused to go. In total, I was lucky enough to get perhaps 3 poops in all the times I tried to potty train him... in all the hours I had spent on this activity (especially right after the writing of my first book...that was 8 months ago). I spent most of March and April of 2002 trying again... but, still no success. Yet, often, within minutes of putting that diaper back on, Zachary would poop... something I'm sure many parents of autistic children have experienced. Although I honestly have not had the time to work on this issue with Zachary the way I need to, I think I may finally have the answer as to "how" to go about it the next time I do try to tackle this... I literally just thought about this and wanted to share it in case it may work for someone. Potty training has been such a huge area of frustration - I think more so for me than for Zachary himself - that I've actually started to often actually include "potty training" in my prayers at night... as I'm sure many other parents have done also. But, why is it so hard? Why do so many autistic children have such huge problems with this issue? Was the answer a physical one or something else? To help with constipation, so often seen in the autistic, a casein free and gluten free magnesium and calcium supplement may be in order. Many children are not casein and gluten free and those who eat a lot of cheese, apples and breads, for example, may indeed have issues with constipation, and should definitely consider looking into the above mentioned supplements. Zachary has pretty well always been on such supplements. So, for him anyway, I don't believe "regularity" is the issue... although I know this is indeed a huge issue for some children... or is it? Is it constipation, or is it something else? I kept coming back to that. I had read that the colon can stretch to four times its normal size... absolutely amazing indeed... and dangerous because as more and more bacteria and feces accumulate in the colon, the more likely an infection. But, still, that was a very interesting piece of information. I then started to consider other things like the fact that other parents on discussion boards suspected toe walking may somehow be related to constipation... and indeed, I suspect it is, but perhaps not in the manner in which parents think it is! Parents seem to think that constipation causes toe walking... but, I'm beginning to be of the opinion that the very opposite may actually be true... that toe walking causes constipation and that this is simply another coping mechanism in the autistic child. It certainly would make sense if examined in terms of issues with partiality. This would also be something very easy to investigate or research. It certainly would be interesting to see how much "toe walking" was exhibited by children who were potty trained verses those who were not. Of course, if you had parents like myself who were not "that concerned" with the issue, that would be another factor to take into consideration. Zachary does very little toe walking, but he does "hold it in" when I know he was ready "to go". Investigating this would necessitate a correlation between extent of toe walking, time between "poops", whether or not parents punished or not or showed distress when children failed to use the potty properly. I'm not saying that parents who have children who toe walk are "harsher" on their children... some may indeed be... but, perhaps others just have children who toe walk for days or refuse to go to the bathroom for days rather than "go potty". I'm certain a good graduate student would know the appropriate variables to look at in investigating this issue. :o) I knew constipation wasn't the answer for Zachary... and his toe walking had all but disappeared... perhaps because I've been so "not concerned" with this issue anymore and have simply learned to tolerate the fact that "this is just going to take time" and so I had become very good at simply "allowing him to do in his diaper". Given all the issues that I've come to understand based on the inability to cope with "partiality" and understand the whole without first understanding the "parts", I came to look at potty training as it may relate to this issue specifically. So, based on that, I wondered "why" potty training is so difficult for the autistic child. Going to the bathroom is a "process" in and of itself, so perhaps that has something to do with it. However, as I thought more about this issue, as it relates specifically to partiality, it all began to make perfect sense. Going to the bathroom literally involves releasing a "part of oneself"...literally losing "parts to the whole"... undoubtedly what could be a very stressful situation for the autistic child. Could this be the reason autistic children were "holding it in" to the point of often becoming so constipated? The reason they were so difficult to potty train? I now truly suspected that partiality, again, was the key. If this theory was correct, then the key would then lie in showing, again, how the parts fit into the whole... only this time, the parts that truly were parts to the whole had to be somehow identified as not really belonging to the whole. A difficult task indeed. So, how do you do that... how do you explain to the autistic child that these "parts" are really not "parts of himself" and that it's ok to "let them go"? Well, the thought came to me that Zachary understands the concept of "garbage" so I simply told him that when he eats (I pretended to be eating something and made "eating sounds" as I explained this concept to him), his body uses up the food, but then, it has some "garbage" it needs to get rid of... I called it "Zachary garbage". I then told Zachary that this "garbage" was the "pee pee and pooh" and that they needed to go in the "Zachary pee pee and pooh pooh garbage... the potty garbage". Amazingly, he grasped the "concept" right away... his first response was: "WOW" followed by "Zachary garbage". He thought the whole concept was rather funny and kept saying: "Zachary garbage". So I kept saying: "yes, mommy doesn't want to see Zachary garbage in your pants... you have to put those in the pee pee and the pooh pooh garbage". I introduced this concept to him perhaps a month ago. He has been less stressed in terms of my insignificant attempts to potty train him, but, I honestly haven't had the time to work this issue with him since I've been writing almost nonstop since the time I introduced it. Unfortunately for Zachary, his mother has put more emphasis on sharing this knowledge with other parents than on making sure his poop and pee pee get to where they need to be. :o) You have to prioritize everything, and I had dealt with this one for so long, that waiting a little longer really did not matter that much to me. If anything, the time I've spent writing has simply allowed Zachary to familiarize himself with the concept that this is "garbage" as opposed to an actual part of himself. I'm anxious to see if this concept will help train him once I am able to make more time and once again tackle this issue. :o) UPDATE: 08-22-02 Well, I'm very happy to report that yesterday, after updating this section, I decided to let Zachary run around the house without a diaper and to put "his potty" in the living room. With no prompting whatsoever on my part... within 2 hours he peed ON HIS OWN in the potty 5 times! As he did this, Zachary referred to the potty as the "garbage cup" - a phrase he came up with on his own! Taking the diaper off and placing the potty nearby was definitely KEY. Perhaps having the diaper on somehow allowed Zachary to sense that "this part of him" was still there... but, without the diaper, he had to put "the garbage somewhere"! I can't believe it could be this easy. :o) Now, I'm just waiting for that first "poop". :o) I will be buying him new underwear and hope to have him trained very shortly, although this is really only an issue I will be able to tackle in September! :o) 08-23-02 Well, the "poop" came... right onto my carpet! Zachary had held it in for close to 2 days. Interestingly, however, he called his potty the "garbage cup" when he peed into it. END OF UPDATE!!! As other parents read the information on my website, a few wrote back to let me know what worked for them. I've posted these on my website also. To see how other parents have done it, please read: Potty Training Help From Other Parents Of Autistic Children. I do believe that actual “physical sensation” may be an issue for some children, and I think more so with the issue of urine. I once read a parent tell the story of how his 9 year old autistic girl, not yet potty trained, had peed in bed during the night. This father explained how he and his wife often had to change the sheets 2 or even 3 times during the night. Upon waking his daughter and telling her she had “wet the bed”, the daughter kept saying to her father: “no, I didn’t”. It was literally as if she could not “feel” the urine… even as it was right there, on the sheets all about her. This issue of potty training in the autistic child is indeed a serious issue for parents who are for the most part, already very sleep deprived. To have to change sheets several times a night is indeed exhausting and frustrating. In closing, I want to caution parents to be careful in disciplining their children over these issues, because in all honesty, I do believe they simply can’t help themselves… either because they can’t physically “feel” the wetness or because their brain makes it such that they are terrified to lose a part of themselves… literally. Thus, again, in my opinion, the key may lie in helping the child understand the parts to the whole of potty training through the use of labels and coping mechanisms that may help. Perhaps a timer in the kitchen would bring enough order to teach a child to “go” to the bathroom upon hearing the timer go off. I don’t know. This is still an area I am struggling with and need to spend more time on… but, if indeed I am correct in this issue and that “not going” is the child’s way of coping with the apparent loss of a part to himself, then, perhaps there is finally a light at the end of the tunnel in that the issue is at least better understood now… and understanding the issue is half the battle! Patience and understanding are indeed words to live by when you are the parent of an autistic child. :o)
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