Topic : 07/11 What’s Up, Doc?

I wanted to make sure I read all of the previosly posted messages before posting regarding this topic.  I am very curious about the 9 and 15 year old boys who are not potty trained.  I have been dealing with this issue with my 10 year old son.  Now, I don't know if these two will have issues like my son has or not, but I consider it quite likely.  I think their parents are very brave to appear on television (though not sure of the wisdom of embarassing their sons) to bring this problem to light -- I'm willing to bet it's a lot more common than folks realize, because no one is going to say they are having a problem with it because ..... well, just look at the jumping to conclusions in these posts, with having ONLY the information that the boys "are not potty trained" -- we don't know to what extent they might or might not be trained (can they remain dry and unsoiled and only "go" in a pull-up, for instance? Do they suffer from severe constipation, or the opposite? Does either have a severe anxiety disorder?).  We don't know all the facts.

I like seeing this get out into the open because I feel a little less alone in what I've been going through.  As a result of not using the toilet by the end of kindergarten (he would just "hold it" until he got home, but would do #1 at school if he had to), we got a referral from our pediatrician for our son to be evaluated by a psychologist or psychiatrist (I can't remember which it was) at age 6 1/2.    I remember the day we went -- he was EXACTLY 6 1/2 that day, and we got the diagnosis of PDD (pervasive developmental disorder) and were referred to all kinds of social services.  The condition does NOT have anything to do with IQ or ability to learn and perform in school.  The diagnosis was shortly after that revised to Asperger's Syndrome, which is on the Autsism Spectrum, just not as severe as what some refer to as "full-blown autism."  It is mostly about social interaction, and for many, severe anxieties.  My son had "wrap-around" services (one on one with a therapist in the home about 2-3 days a week) for about 6 months, then attended a social skills group 3 times a week, then down to two, then one, and has not attended for about six months or so now.  His social skills are much improved.  But he also demonstrated having many sensory issues as many with an ASD (autism spectrum disorder) do, mostly regarding the color red, blood (and he suffered a nosebleed most nights for nearly a year -- quite a trauma for all at home here), and loud noises, like emergency vehicle sirens (and, unfortunately, we live along a highway were they are frequently passing), hair dryers, vacuum cleaners, and, most notably, fire alarms at school.  He would develop a "stomach ache" or "headache" on days when he was sure there was going to be a fire drill at school (usually starting on the first day of the month until there had been one).  We worked it out where his teacher would get a pre-warning from the principal that there was going to be one that day (had to be careful so as to not alert the other students, because it's not a TRUE drill if they know ahead of time) but he was able to figure this out and it increased his anxieties.  We finally got referred to an out-patient therapist who has been working with him for two years now.  He has successfully dealt with all of the issues he was going to see her for EXCEPT for the using-the-potty one.  (Note:  I have a friend whose son, I believe, is 17 and is severely autistic.  I asked her once about his potty-training status, and he is not.)

Now, some of the semantics here revolve around how do you DEFINE "potty-trained"?  I suppose for most it means the ability to recognize the urge to have to go (both #1 and #2), the ability to hold it until reaching the toilet, and the ability to "go" in the toilet.  The boys in question might be acheiving one or two of these, possibly none, but the show will tell (I plan to tape it to watch with my husband, perhaps my son, who is aware of his diagnosis and is very apologetic that his anxieties can create problems and inconveniences in our lives).  In my son's case, he has always been very constipated since being weaned from breastfeeding, and gets worse the more dairy foods he consumes (we tried to restrict them, but that was next to impossible, so we have resorted to trying to limit them somewhat and using things like Miralax and extra fiber in the diet, which would benefit anyone anway!).  The constipation problem is proably exaccerbated (sp? too lazy to look it up, lol!) by the fact that he would hold in his BMs (too busy with whatever he was doing to give in to the urge to "go" to the point where he had to relearn to recognize the urge, probably).  He has never been a bedwetter -- I can't remember the last time he had to wear "protection" to bed.  He knows when he has to go, and can hold it.  His problem is that he is truly scared of the toilet.  We've tried some desensitization: standing next to toilet while going #2 in pull-up (note: problem is with BM, not with urination; lucky him for being a boy and can stand up to pee!), sitting down on toilet with pull-up on, etc.  He says he loses all urge to evacuate when he sits his behind on the commode.  Our situation is complicated by the fact that we have just one toilet in the house, and the room is very often tied up by his 16 year old sister (who loves to take showers) or his dad (that is the only room where he will smoke at home, but that is another issue with which to deal!).  I know, why should THIS be a problem when so many (like myself) grew up in homes with seven people sharing one bathroom, not a measly four?  But the fact that someone else is in the bathroom when he has to go is an oft-used convenient excuse for why he couldn't try to use the potty this time.

OK, yes, I KNOW this is NOT considered "normal" behavior -- what you all mean is "socially acceptable."  But please remember that what is not socially acceptable is often hidden from you in order to avoid the passing of severe judgment as I have seen in several posts.   So it may be less uncommon than you think.  Don't jump the gun that the parents are horrible/evil/inept (maybe they are a bit of that, but if they've been trying and tearing their hair out, they have my compassion)/uncaring/whatever.  I don't think I am or have been any of these.  Perhaps my biggest fault is for giving in when my son's anxiety level hits the ceiling and he begins to hyperventilate or have a meltdown, but then I am I being cruel if I keep on forcing him past these feelings?  We don't give up, we are still trying -- there are always new tactics (that don't involve beating the poor child, which it sounds like some might resort to in this instance, or allowing him/her to practically pass out from the anxiety attack) to try out, and I'm hoping that Dr. Phil can shed some light on some.  We keep on patiently plugging away with gradual overcoming of the resistance to leaving the "comfort zone."  The increasing realization that his friends (of which he now has a few) would make fun of him if they were to find out is a motivation, along with the removal of privleges until he makes another "baby-step" towards the goal of using the toilet.  (And we'll work on cleaning himself as the goal after that one, lol!).  (And let's not even get into the anxiety about dentists and inncoculations -- but of course, no one reading this has, or knows anyone or has, phobias or anxieties about these, right?)

Like I said to my husband, I am going to be 50 years old shortly and I consider that too old to be still cleaning up butts unless it's a grandchild (and I'm still way too young for THAT since I'm hoping the 16 year old pays more attention to her education and future career before considering making me a grandma!)

OK, please, go ahead and tell me what a bad mother I am because I have a 10 year old who is still not completely potty-trained.  Sure, I can go around telling myself until I'm blue in the face that "things shouldn't BE like this!" but that's the way they are and I must learn to deal with the way things ARE.  Just doing my best to work with what IS and improve it a little at a time, no matter how little that is at a time and how long it takes to get to whatever "perfect" and "normal" are.

Whew!  Thanks for allowing me to have my say!

Not being "potty trained" can have a MEDICAL reason ... it is called encopresis.  Some children, particularly boys, have difficulty eliminating waste.  This may be a result of many reasons or a reason that cannot be determined.  Some of the reasons include poor muscle tone in the rectum, an inability to feel or recognize the body's message to go to the bathroom, an inability of the body to "move" the waste through the intestines/bowel because there is either poor or no peristaltic movement.  There could be a number of other reasons as well.  This is an illness that is NEVER talked about in public for just the reason that most of you have shown ... people tend to think of it as disgusting with the end result that children who have it are embarassed and have very poor self esteem. They don't want to be ill but cannot fix it.  It takes many many years and a lot of work to get it under control.  Oddly enough this illness is often improved or it may even disappear around the time of puberty.  Doctors think it may be a result of an increase in hormone production.  Interestingly, it is actually much more common that most people would have believed - it is just never discussed - which is a terrible shame because of what it does to the children.  So perhaps instead of immediately judging these children, you might want to be informed first (try googling "encopresis" and "enuresis") and then watch this episode to see if that is what they have.

Encopresis is a true medical issue that involves physical AND emotional issues.  It can GREATLY affect the child and  their family.  They are loners which adds to the problem.  Parents must treat both aspects or the child won't get better.

I teach Special Education and I have only encountered one case in 22 years of teaching but it almost made me quit. If it hadn't been for a wonderful man, Tony Lowe,  who has two sons that suffered with this disorder. He rans the Encopresis Information Exchange in the United Kingdom and was a great source for me.  He even corresponded to the students in my classroom thru email to answer all their questions and frustrations regarding their classmate (who would soil daily).

My advice to any teacher dealing with a student with this disorder is to demand that the parent be ACTIVELY seeing physicans and mental health personnel, and that the school provide a private lockable restroom that the student can change and clean without embarrassment and talk to Tony!  Good luck!