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© 2000-2007 Teresa Kellerman   Research links nerve development to bedwetting
Medical experts say that bedwetting under the age of six is not abnormal for typical kids. Bedwetting up to the age of 8 or 9 is not uncommon in kids with FAS disorders. Advice from professionals might work in some cases, but only if there is a clear understanding of the underlying neurological processes and dysfunction present in FAS disorders. We all know that the real experts are the parents who have been through it, whose children did not incur any serious psychological damage from wearing disposable pull-on underwear for a few years. Here is a collection of good advice from Moms who know: My approach was to totally ignore it. When the kids said they wanted to "potty", I did. Each day when they got up, I asked them if they wanted to wear regular undies or disposable underpants. Which ever they said, I went with that. Same at bedtime. One day, they just went with undies all the time. One child was on and off during the day, but always had the disposables at night, till the day of his 5th birthday. I went to undress him for bedtime and he held up his hand in "stop" gesture, and said, "Oh, no, 5 year olds don't wear diapers." He did have accidents for a couple of years at night time. But the only requirement was that he tell me so we could change the sheets. By the time my last child was ready for training, I was so tired most of the time, I figured it was easier to ignore it again. My other kids were still little when my youngest was born. It was like having quadruplets. And you know how it is -- when kids first train, they want to try out every potty between here and your destination. So I thought it was easier to again ignore it for a while. She was in diapers till 3-1/2, when one day she said she was wearing "big girl pants" from now on, and she did -- never missed. When people ask me how I trained my kids, the best answer I can give is "I didn't." --Suzy in Phoenix Here are some suggestions offered by our doctor: -Limiting liquids after 7 p.m. -Waking child up to use toilet before you go to bed. -A "bell pad" alarm that alerts child as soon as wet. -Health food store "holistic" meds. (We haven't tried these.) My son is 5 and is still in disposable pull-on pants. I don't let this get to me. I know when he is ready we will progress to the next step. I'd feel better if he didn't get up at night anyway!!! --Cindy Can you believe my Psychologist is pushing the toileting issue on my two and a half year old!! I just look at him with a blank stare and say ok :) LOL This morning, for the umpteenth time, my 12-year-old had pooped in his room. This time, he had it confined to his underwear (as if that made a difference). I said to him that I was really tired of his pooping in his room and that he was going to have to clean the carpet yet again tonight. He said to me just as the bus was arriving "But, I didn't poop in my room, I pooped in my underwear." Sigh. I'm not making any headway at all. --Val My son is incontinent during the day, and dry during the night. (Though I'm holding my breath as he has a whole week of being dry!!!) So these methods are not effective for him. Hope some of these ideas help! --Cindy Q: My daughter is 6 years old and has FAS. She has been toilet trained for almost one year, but she still soaks her disposable pants every single night. Is this typical of kids with FAS? When can I expect to see her dry at night? Is there something I could be doing to encourage it? A: Those are good questions. It's hard to say what is typical for FAS, but from parents I've worked with, this seems to be a more common problem with FAS than with typical non-disabled kids. You can expect her to be dry at night anytime between now and age 18. LOL-sorry, that one just doesn't have an answer. What can you do to encourage her? At this age, the best thing to DO might be nothing. I always get a little nervous when someone asks about Toilet Training. There are so many factors that figure into it, not the least of which is the attitude of the parents. But since I know you, Gladys, I can trust that your attitude is just fine, and that you are asking out of love for your child without a lot of the motives that some parents have when they want to get beyond the potty problems. You probably already know all this, but I'm going to write it anyway. Six years old is too young to worry about whether a child is night-trained yet. Complete toilet training depends on the quality of sleep, kidney function, sensory function, fluid intake, salt intake, Nutrisweet intake (very hard on the bladder), caffiene intake (diet cola drinks are especially "dangerous"), neurological function, developmental level, medications, and probably a lot of other factors that doctors might not even have learned yet. There are some really good books on the shelf about Toilet Training, but there's also lots of bad advice too. Sometimes the techniques work, but if they don't work, more harm could be done than if nothing were attempted at all. I ask parents who are concerned about their child getting toilet trained three questions: 1. Why do you want your child to be toilet-trained? There are probably several reasons, some have to do with concern for the child, like the child wants to spend the night a Grandma's or a friend's, and you don't want the child to be embarrassed. There are also parent's own concerns, like the cost of expensive disposable, the hassle of washing sheets so often, the inconvenience of having to bathe your child before breakfast every morning. It is a hassle, very frustrating. There is also that nagging fear, "Will my child EVER become toilet-trained?" Nobody wants to think their child will be wetting the bed as a teenager. It happens, but that is rare, so don't waste your energy worrying about that. 2. How important is it to you that your child be toilet-trained? Make a list of all the problems and issues and concerns you can think of regarding your child's behavior, health, education, future, etc. Of course you included toileting issues. Now put all those problems in order according to priority of importance. Which ones will have the most negative impact on your child if they are not resolved within the next year? See how low down the list the toilet training thing is. Let it stay down there. Don't make it an issue right now. If your child will wear the disposable pull-ons and seems not to be concerned about it, just leave it for now. 3. How soundly does your child sleep at night? This is probably one of the three most relevant factors, the others being sensory issues and medications. Now I'm going to tell you about the reverse problem that I had with Karie - still have, as a matter of fact. She is 25 years old now, and in many ways is still as emotionally mature - or should I say immature - as she was when she was getting potty-trained. LOL. I had NO problems with her wetting at night, and she was toilet trained at an early age. But... she does not sleep well at night. She wakes up to go to the bathroom just fine. In fact she wakes up to just about any kind of sensory interruption. If I tiptoe into her bedroom at 2 am, she will open her eyes and say "What?" If she gets up to go to the bathroom and everyone else is asleep, she will get into something, snoop, forage, go outside, etc. So I have to figure a way to keep her safe when she wakes up. At her group home, there has to be an awake-at-night staff, and when she stays at my house or goes on trips with me, I have her sleep in the same bed so that I can wake up when she wakes up. I would gladly trade a good night's sleep for a box of size large disposable pull-ons. I know that her waking so easily is due to a lot of the same factors that other kids sleep through the signals that they have to pee. Because Karie doesn't cycle into the level IV and misses out on that satisfied feeling of being rested, she is always tired during the day, and is grumpy and irritable. Of course she doesn't have FAS, but I know many kids with FAS who share the same symptoms. It's all neurological dysfunction that we're talking about. About Johnny - He was not a bed-wetter, but he has had other kinds of issues around toileting, still does, but bed-wetting isn't one of them. He was not a sound sleeper at all. Now that he's older and on medications that help him sleep better (Paxil twice a day), he sleeps much better and is well rested when he gets up. I'm going to guess that, since John didn't have any toilet-training problems, he probably had good neural connections between his bladder and his brain. He got all the messages. He is lucky. Most kids I know with FAS have problems in this area. I'm guessing that for a lot of kids with FAS and other neurological disorders that those neural connections are messed up, and that a lot of the strategies suggested by the professionals and authors probably won't work. You probably already limit fluid intake after a certain hour. You probably already tried waking her up in the middle of the night. You probably found that most of those little tricks don't work. What I'm going to do is this: I'm going to ask the parents of the older kids how many of their kids had issues with toilet-training beyond the age of 5. I'll bet there's a lot. Then I'm going to ask how many STILL have problems with it now. I will be happy to share the results of my little survey with everyone else. Not long ago, someone asked me a question along the lines of priorities for what I worked on so hard with John when he was younger and how I see those priorities and the results of all my efforts now that he is older. I am still thinking about that question, as I think it is important. In looking back, I would now say that getting him toilet trained by a certain age is not something I would make as a goal. Whether the issue is bed-wetting or something else, there is another important question I might ask myself: "Is this my child's problem, or is it my problem? Or is pressure from outside sources turning it into a problem?" Very often we think something is a problem because the professionals tell us it is a problem. Is this a problem for your child? Is someone frowning or going "Tsk Tsk" when you tell them she is not night-trained? Are the messages in your head telling you she SHOULD be trained by now? Since she is only 6 years old, how about putting this one on the back burner for awhile. I'm sure that you don't let your frustration or concern add to her anxiety about it. Be glad that she gets some good, deep sleep, then stock up on the disposable pull-ons. One last word of advice to you: Keep following your intuition and instincts - they're good ones! -Teresa My 7-year-old son still wets all the time. He dances the dance so hard, a blind person would know he has to go, but he doesn't feel it. And I believe he really doesn't. I think our kids are using so much energy trying to survive in our world & their sensory systems are out of wack to begin with. --Paula I think it has a lot to do with Sensory Integration Disorder. Like the rest of their sensory systems, they have trouble recognizing that feeling and if something else is distracting them, well, it's all over. (pun intended LOL) --Gladys I enjoyed the thread on toileting and am soooo glad not to be alone - all my friends are so proud of their 2 or 3 year old - potty trained!! I wish! Between the snot and poops, if I could turn them into a consumer biproduct, I'd be a rich lady!! LOL --Diane W NEW! Tony used to throw toilet paper in the trash can because no one ever taught him what to do. He'd ball up a big wad of paper in his hand, pee in it, and throw it. He'd wipe his bottom with his underwear and hide it. We just told Tony he'd have to be supervised every time he went to the bathroom. He hated being watched in the bathroom, so the behavior changed quickly. We watched him for a week, then allowed him in the bathroom while we waited outside. Then we let him go on his own, but we had to check the bathroom before he left it. --Kris I had a hard time training Anne Marie, and when she was 4 I actually went to a potty-ologist (Dr. Ray Condon, a guy with a PhD in teaching life-skills to people with disabilities who has a reputation locally for being the best potty-trainer in the world), and he asked me all about her. Then told me what to do, I did it, and it worked almost instantly! He said he thought her problem was related to balance and to the ability to focus on her muscles. He said that we needed to rig it so that her feet could be flat on the floor, her back was completely supported, and she had supports on both sides of her, very close. He said that with the back, side and floor support, she would be able to pay attention to letting go and pottying. He said that her focus was on balance, which was a survival instinct, and as long as she had to focus on balance she wouldn't be able to go. He was absolutely right.
Parents of children with FAS/FAE who have extended need of disposable underwear for toileting troubles that are related to neurological damage (as is the case in FAS/FAE) have had success with getting insurance and/or medicare to cover the expense. Bulk products can be ordered here, and if arrangements are made with the insurance company, you never see a bill, just order and wait for the delivery:
My son Matthew is seven years old and can't sleep through the night without wetting. He has been wearing "Goodnights" since he was a toddler. He was teased by a neighbor's child who came into our home and saw one of them in the bathroom, and now the entire neighborhood (some of whom attend his school) knows his secret shame. He has made a friend at school (and scouts) and talks about wanting to spend the night at his house, and fear that if we don't fix this problem soon, the entire school will be teasing my dyslexic, Central Auditory Processing learning disabled son. In short, this calls for drastic measures. I ordered an alarm and moisture sensor online and Matthew has been using it for five days now. The first night was really rough. He wore his goodnight and we attached the sensor to it. He was afraid of the alarm and barely slept at all. He was in my bed, scared of it, all night, and I had to get him up every 2 hours for a bathroom run. He didn't let me sleep more than an hour at a time all night. The second night I got him out of the goodnights and into underwear and we turned off the sound on the alarm and set it to vibrate. Once again, Matt spent most the night with me but I finally got him back into his own bed and stayed with him till he fell asleep; the alarm was not waking him but it did me, so I got him up. By the fourth night, he had learned to awaken when the alarm vibrated and take himself to the bathroom. He had trouble turning off the alarm and so awakened me. No problem. I reset the alarm and re-attached the sensor to his clean pair of underwear (yes, there are plenty of changes of underwear with this program, but that's just fine with me). By the next night he was awakening himself, taking himself to the bathroom, changing his own underwear, and awakening me to ask me to attach the sensor to his clean underwear. He has experienced success (he charts his progress daily) and he now has no fear, for he has realized that he is going to beat this problem. He believes he will never need his goodnights again, and so do I. Sure, he will probably have to wear this alarm for quite a while, but that's better than wearing diapers to a young man, and his mom understands that. Besides, it's kind of cool to have a high-tech gadget pinned to his shirt. I am sure he will want to explain it to his pals in the future. If you're having trouble teaching your kids to hold their bladders, you may want to give enuresis alarms a try. --Diane We tried that with Vincent and we practiced before he went to bed, making the alarm sound and telling him that as soon as he heard it he should jump out of bed and pee. Well, first night will heard it we ran in and he had jumped out of bed and was peeing on the floor beside his bed. Now, talk about taking something literally! --Carol Ann A message from an adult who experienced bed wetting problems up to age 12 and survived: I wet the bed until I was 12 or 13 years of age, at this time I had no idea I was FASD and My Parents where beside Themselves trying to get me to stop wetting the bed! They even bought a new device in the 1960's called The WeeAlert, this caused me to have a Phobia about alarm-clocks (still do to this day at age 48 years)! Also we lived in a row-house in Philadelphia, Pa and it was funny when the wee-alert went off which was connected to a pad that went under the sheet in the bed so when urine hit the pad a ungodly sound went off! I was frozen in fright and Mom Dad and My Sister stood in line to use the bathroom, also we heard a lot of our row-house Neighbors flushing their toilets LOL! I was scared sh_ _less and had to be dragged out of bed LOL, don't know what happen to cause me to stop wetting the bed but did! Anyway this FAE-Man had a bed wetting problem until 12 or 13 years of age!! --Steve NOTE: When following advice from friends and relatives, from doctors and psychologists, from books or articles, keep in mind that most advice is directed toward typical kids, and that your child is unique and that many of these suggestions might not be in the best interest of your child. Follow your instincts about what the best advice is for your particular situation.  
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