UPDATE: 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
When it came to difficulty in potty training of children with autism, I still very much thought that the issue could be one of “partiality” processing as discussed in book two and I still - more than ever – thought that toe walking and potty training in children with autism were related. Although I would touch briefly on these topics here again, I encouraged parents to read in full the section I had previously written on toe walking and potty training in my second book also.
In my opinion, the issues of bedwetting and potty training certainly had to be related to damage in the area of the basal ganglia and the cerebellum. Both of these areas of the brain were known to be impaired in children with autism. If you looked at the functions involved in the basal ganglia, they included matters relating to movement control, cognition, learning and motivation. These functions were all functions that were involved in bedwetting and potty training. In any child, to gauge if that child was ready to be potty trained, "motivation" was perhaps the best indicator. For example, unless the dirty diaper became “a bother” for the child attempts at potty training were more or less futile. Until a child reached that point, as I had so clearly learned, potty training could be a difficult battle indeed.
Zachary had only recently begun to experience “discomfort” with a dirty diaper. For now, he simply remained “standing” if his diaper was soiled. He could pretty well do a “big boy pee pee” on demand, but would not go “on his own” if his diaper was still on – he constantly had to be reminded. Upon reading of my frustration in this area, two mothers of children with autism had written me and informed me that the “key” for them had been – removing the diaper.
Indeed, if Zachary’s diaper was off, Zachary did go “pee” on his own quite well.
I had tried to “poop train” for about two solid days – in the house – with the diaper off. Well, needless to say, the moment I had turned my back – even if I had carefully watched Zachary for hours – the very moment I turned my back was when he “dropped it” on the carpet. Two days of that had been enough. Spring had just arrived where we lived and I certainly looked forward to attempting to finally potty train Zachary outside. By end of summer of this year – 2003 – I certainly hoped to be able to have this issue under control.
As explained in my second book, I had attempted almost everything in this area. I thus decided to look a little further into “why” this was such a problem for my son. Perhaps in understanding the “why”, I could come to an understanding of what could work better in this very stressful area.
The basal ganglia had
long been known to be involved in "learned responses" and "goal directed
behavior". Clearly, this part of the brain was believed to be involved in the
control of motions and learned responses.
Also, it was well known
that the basal ganglia received information primarily from the
motor cortex (frontal lobe) and the somatosensory (body
sensation) cortex (parietal lobe). The basal ganglia were believed to play a
role in obsessive-compulsive behavior, addictive
Obsessive-compulsive behavior – and “inhibitory” functions… could that mean that “inhibited” functions could become “inhibited” in an obsessive way? That was what I had earlier wondered about and still wondered about. I had no idea.
Yet, of the functions
associated with the basal ganglia, habit formation and working or
procedural memory would again be involved in potty training issues. The
basal ganglia and right parietal cortex were also known to play a role in the
body's "timekeeping" functions - another critical aspect for potty
Note that in his
interview, Dr. Jay Geidd also stated that girls had a larger basal ganglia than
did boys and as such, that could offer them more protection from brain damage.
Although Dr. Geidd was not speaking of autism per se, he stated that a girl's
brain was known to mature faster than that of boys. This could explain why boys
were more impacted by autism than were girls, because the brain of a boy simply
needed a longer time to mature and as such, it could certainly be more
susceptible to assaults from things like thimerosal - a mercury preservative
used in vaccinations that very much appeared to target immature cells.
Furthermore, I believed that the fact that casein (a dairy protein) and gluten (a grain protein) acted as natural opiates in children with autism could also be part of the problem.
An "opiate" numbed. It was a well-documented fact that many children with autism were insensitive to pain. Again, both somatosensory functions and the sense of touch were located in the parietal lobe and this was the area from which the basal ganglia seemed to receive a great deal of "input".
In my own son, sensitivity to pain "came back" when Zachary was put on a casein and gluten free diet.
When I added digestive enzymes from Houston Nutraceuticals (http://www.houstonni.com) to break down trace amounts of casein and gluten (i.e., gluten was in soaps, toothpaste, etc. – basically everywhere), I noticed Zachary's sense of "touch" and overall somatosensory issues as they related to “feeling” things seemed to get better.
Initially, when put on these enzymes, children seemed to release a lot of "pee". Many parents had commented on increased urine levels on parent discussion boards relating to enzymes and autism. This could be due to the fact that food proteins were being better broken down via enzymes – I did not know. In Zachary, within a week or so, "urine output" seemed to get "back to normal".
Thus the natural opiate effect of casein and gluten could certainly play into potty training issues – perhaps for some children. Whether or not it did for Zachary – I did not think so given he was pretty well casein and gluten free. So, in his case, I felt it had to be – something else.
I once read on a message board that a parent said he and his wife had to change bed sheets up to three times a night for their twelve-year-old daughter with autism. The father explained how when his daughter was awakened, she insisted her bed was not wet - even though it clearly was. The father explained that it was "as though she could not feel it”.
Bedwetting and potty
training was further complicated in children who had issues with the sense of
touch and somatosensory processing - and that was probably most children with
autism - especially those who were not casein and gluten free.
That incident really made me wonder if Zachary could actually "feel" the pee coming since he appeared so confused when it did come and he had just left the potty. If he had “felt it” coming, I thought surely he would have peed in the potty – but he had not – and getting a “pee in the potty” was not a major issue in terms of getting his cooperation to do that – poops were very much a different story.
Since he has been on
digestive enzymes from
to help break down casein and gluten, this was one area I did feel had been
better in Zachary - that he could "feel" the pee coming more easily and was
better able to control it.
There were many parents on message boards who believed that constipation caused "toe walking" in their children - I thought the opposite could be true - that "toe walking" caused constipation. Co-located in the parietal lobe were somatosensory functions and the sense of touch! In addition, goal directed movement was in the parietal lobe/basal ganglia parts of the brain. A child who toe-walked would obviously be experiencing a "greater sense of touch" as more pressure was exerted on the feet - and in my opinion, the toe walking and the sense of touch and somatosensory functions were related. In so much of what I had seen in Zachary, it truly appeared that those functions co-located in one section of the brain could be much more inter-related than we could ever have imagined.
Whenever I saw my son
toe walking, sure enough, the poop was close. I honestly believed this was how
these children prevented themselves from going to the bathroom.
I had found that if I took my son's diaper off, he had no problem finding the potty I kept in the kitchen and peeing in it. The first day I decided to remove the diaper, in a period of two hours, he peed five times in the potty with no prompting from me whatsoever.
Something I did find useful, however, telling Zachary that poop was "Zachary garbage". Having him understand it as "garbage" in my opinion, made him understand that he did not have to "hold it in", and I believed that had gone a long way in helping to alleviate much of the stress in the situation he seemed to experience in matters of “poop training”.
We literally tried everything it seemed. For a while, I had a tv and vcr in the bathroom. I found Zachary got "too comfortable" and enjoyed that - too much. He could sit through an entire movie without a problem. When I went from the tv and vcr - trying to be the "efficient mom" again - I brought in flashcards and other teaching materials. Well, again, I found that removed the focus of the "reason" we were really there - and so, I now thought it was probably best to just do "bathroom work" while in the bathroom – and our “stays” in the bathroom were no longer than five or ten minutes. If it did not happen by then, I figured it was not going to and so, it was best to just accept that. As such, I did not suggest non-bathroom activities to other parents and believed it was better to stay focused on "why we were in the bathroom in the first place".
In the past, I had convinced myself I could “wait him out”. I had even tried to stay in the bathroom with Zachary for a couple of hours – entertaining and waiting - as I was sure many other parents did in their determination – thinking that if he could just “do it” once or twice, he would be ok - but Zachary could always "wait me out"! So, "long hauls" were also out. If he did not go within a few minutes or so, I figured it was not going to happen.
Zachary certainly could be just as determined as I was – and now - I figured unless the motivation was there - with the feeling of discomfort from a dirty diaper - it probably was not the best time to potty train.
I also learned that the
colon could stretch amazingly. One parent on a message board once mentioned
that the colon could stretch up to four times its normal size. If true, that
certainly posed a problem because "holding it in" could definitely lead to
bacterial infection and some children it appeared, could literally "hold it in"
- for days!
It was not that Zachary
was not trying or did not want to please me or that he was "opposition defiant"
- a new buzz word in psychology - it was that there was actual brain damage! I
could not help but laugh when I saw these “new buzz words” in psychology. In
my opinion, there was simply too much “blame it on the mother” or “blame it on
the child” going around and a little too much avoidance of the actual issues.
I also planned to use a "timer" of some kind in doing this training and would limit potty training to fifteen minutes or so. About a half hour after eating was usually the time a child seemed to “go” if “the need” to was “close”. Recently, I had taught Zachary how to read time. Since I wanted him to also have a concept of "how long a minute was - or five minutes or a half an hour, etc." I made use of the kitchen timer a great deal.
When it was near time for bed, I usually said, "time for bed" and recently, always had the predictable, "no, not time for bed" response accompanied by: "I'll be good if you let me stay up longer" - to which I usually answered, "ok, but only for..." - and I either said, fifteen minutes or half an hour. I then put the timer on. So, Zachary knew that a "timer" meant "it was time for something to happen" - either to go to bed, that food was ready, etc. When I started to potty train – again - I planned on "extending" the use of "a timer" to include "time to poop" also.
In my opinion, if Zachary started to associate a "timer sound" with "time to go", then, that may help, too in triggering his own "clock" and "habit formation". I did not know – but I certainly hoped it did.
There were plenty of sites on the Internet offering parents advice with help on potty training. Many offered the basic, common sense type stuff along with pictures of “steps” to completing the task. Although “step approaches” via a group of pictures to paste on the wall provided a nice first reference for Zachary in laying out each individual, physical step required to “accomplish the task”, I found that such “step cards” actually did very little to help with the actual potty training in his case. Zachary looked at these little drawings and found them “cute” as he read them, but that was about the extent of it. He read the bottom of the pictures much as he would perform a “counting task” – starting with the first and going through all the steps – much as if he were counting to ten. He had a perfect order in his reading of the “pictures” but he certainly was not any “more” motivated to go to the bathroom based on “the pretty little pictures” mom had put up for him outlining all the steps.
I had even made 8x11 “poop in the toilet” pictures with a picture of a “poop” in “yellow” toilet water and pasted them all over the house as “reminders” – but still – no luck!
As I thought about this, it actually made sense. Certainly, I had provided the “references” in terms of what was needed, but, in this case, for a child with autism once the “references to potty training” had been provided – then what? It was not a matter of “understanding” what was expected – it was a matter of actually doing it. Zachary understood “the steps” quite well. He knew “where” poop was supposed to go. He just refused to do it.
Learning to use the bathroom was just that – a learned task – a task that becomes “habit”. To learn that “task” required repetition and memory formation for a learned motor function (frontal lobe). In researching autism, schizophrenia and Alzheimer’s, clearly, evidence indicated processing or task completion issues in all these disorders. I knew that at least in autism and Alzheimer’s, what were called “hand over hand” techniques worked well. These were techniques whereby help was provided with the “first step” and basically, because these were learned tasks or habits committed to memory, the initiation of that “first step” basically triggered all other steps in the process so that the child with autism or person with Alzheimer’s could then go on to complete the task.
Indeed, I had seen this in many situations with Zachary. Potty training was very much the same type of situation – with one huge exception – something “leaving” the body. There was no doubt that Zachary had found sensing “something leaving his body” very stressful. Calling poop “Zachary garbage” had helped tremendously just in terms of letting him know that it was “ok” for this to “leave his body” because – like garbage – it was simply his body’s way of throwing out something it did not need. Yet, I knew that for Zachary, a child who focused very much on the “parts to the whole” – a child who always wanted “all the pieces of the puzzle” to fit in place “just right” – the experience of going to the bathroom, literally involved - losing “a part to himself” – and I knew this was why he found this to be very stressful.
As such, I wondered if there could be a “learned inhibition” in addition to a “learned behavior” given the basal ganglia had “inhibitory functions”. I had no way of knowing – but I certainly wondered if that could be possible – that brain damage could result in obsessive inhibitions as well.
As such, although I very much looked forward to days “without diapers”, I resolved to be patient in allowing Zachary time to come to terms with this issue because as difficult as “poop training” was on me, Zachary’s autism – overall – had been very difficult on him too!
“Poop training” I found to be more stressful on me than it had been on Zachary – of that, I had no doubt. I was now planning on tackling this issue outside - in the late spring and summer - with Zachary wearing just a long t-shirt. He was finally showing discomfort and had finally done a couple of poops in the potty recently – only two so far – but, that certainly was a step in the right direction – especially since he had told me he “had to go” on one of those occasions. Of course, since then, he had continued to poop in his diaper, but at least there was hope on the horizon. :o)
Patience and understanding – certainly two words to live by when it came to the issue of – potty training!
My mother always used to say that when things seemed so hard - just remember - there was always someone worse off than you in the world. That always helped me get through another day and keep things in perspective!