8 year old with SPD has trouble with DAYTIME wetting... any suggestions?

by Susie
(Israel)

My 8 year old son was diagnosed with SPD about a year ago. Among other things, he is still not able to keep his pants dry during the day. He says he doesn't feel it. We have had many visits to a variety of different health care professionals (both conventional and alternative). We have tried everything from sticker charts to beeping watches, acupuncture to bio-feedback, OT and more!


He is going into 3rd grade and STILL WETS HIS PANTS.

Does anyone out there have a similar problem? We feel so alone with this. It is common for kids to wet their bed some still at this age, but he is actually DRY at night..........it's just that when he is busy doing something (anything), he does not get the message from his body to stop and pee.

HELP PLEASE...

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Aug 29, 2016
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Hope!
by: Mare

Dear Step Mom,
Know you aren't alone, you can see that from this strand! My son was 11 when he stopped wetting in his pants daily. He wore a pull up all day. He didn't want to change that.

A few suggestions to offer that helped keep me in check... our routine was try to use the toilet in the am, stand and count to 10, no matter what, go in and sit, stand sit on the tub or the sink, pick your nose, just count and wash hands. He hated it every time. It turned into a meltdown, but i had to establish a habit since sensory kids and ones who have memory trouble need consistency.

Use the pull ups, my guy had no trouble sitting in a wet one for 24 hours!! it felt fine to him. I think the weight was ok. I asked him to check himself every hour or two, then use the bathroom to change.

I spent a lot of time early on yelling at him for not using the toilet or changing. This is a huge regret. I changed it up to dealing with it like a job function. Accepting that he just wasn't capable, I had to do it for him. Don't look ahead, deal with each day.

Paying for pull ups was worth every dime. Washing clothes, cars, furniture, carpets and other homes was horrendous. pull ups meant I had a life. The changing part was ok. I always carried extra pants and pullups in the car. He almost always used the toilet to poop (signal is stronger)

Then one day---11 years in, he asked to use the bathroom urgently, it was to pee. We haven't looked back! He occasionally wets overnight, but that seems to relate to not going before bed or over-tiredness. We still keep an eye on him and encourage a bathroom break and stop the car on a dime when he says he has to go. He gets late signals.

I think he does anything when there is a serious treat--candy, video game. He gets hyper-focused, but that can't be taken to mean he can do it. It is very short lived. I wish you well, talk to people who know, accept your child. This runs deep for them, they don't want to be different, but are, they need to feel safe at home. Peace!

Aug 28, 2016
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my step son is almost 8 and wets all the time
by: Anonymous

I recently became a step mom to an almost 8 year old. He will wet during the day and at night. He will even sit in it without changing. Well my parents came and picked up on it said u have to ignore it..we ignored it for weeks if we saw he was wet we would tell him to go change.

Well my husband has dealt with it for 8 years. He has no mother she had her rights terminated when he was two i am it. My husband works alot and his x use to do things like rub his nose in it and put mustard on his tongue. I am not cruel but we now make him wear pull ups. We tried taking things away and rewards.

Example yesterday he said he didnt want to stop watching tv. We did try telling him we got pills from the doctor that was a memory pill to remind him. Well it seemed to work for a few days. The candy box came up missing where i hid it so i think he caught on.. So we know it van be controlled now.

I have taken him to the baby sitter in only a pull up twice..i explained i had to because he wouldnt tell anyone if he was wet and we couldnt have him be sore, that way we new if he was wet. Well when i did this it seemed to work he was embarrassed and he stayed wet to earn back his cloths. Well unfortunately i did it because i couldnt keep up with washing his cloths.idk

i try to keep positive and know if i deal with it its better. My husband took him to the dr once before we married and he just said he would grow out of it..

Aug 21, 2016
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Small steps to dry
by: Michelle

Hi gang,

I have been reading all your comments. Very sad. This is a tough club to be in. My son has Down syndrome. He is dry at night and has minor accidents during the day. It varies a lot. Some days he's dry and some days he changes over and over.

I have discovered that he is sensory shocked a fair amount of the time. He pees if anyone is upset with him or if another kid gets in trouble. He pees if he is frustrated with his school work. He pees if he's anxious about where we are going.

His anxiety about the unknown causes it all the time. If he thinks I'm driving near the barbers or a doctors office he has an accident­čś×. He's also afraid of most bathrooms. He doesn't like the noise from toilets and hand dryers. He fears going into most bathrooms. These are the outward reasons he pees.

I also believe he has low muscle tone and that may be affected more by gravity when he is standing up. We also found that he did have severe constipation on Xray even though he was still having regular BMs and also never complained of discomfort.

We now have home in a drink called calm for regularity. It's kinder than mirilax and easier to regulate.. At school he stays on a bathroom schedule but anything can cause an anxiety squirt. I use carefree liners I. His underpants it has reduced most of his accidents. I hope he'll grow out of it, but this may be life as we know it.

There are in home potty trainers available on the state health plans. We had one in the home when he was 4. She helped quite abut and helped a lot with our behavior on the issue. She taught us that the negative and embarrassment had to end. It was adding to the accidents with high anxiety.

She insisted anyone involved in his potting had to be positive or removed! It was a good move. We made sure the school held that standard. I always make sure he's got positive sped need friendly staff and teachers that are willing to accommodate his physical and emotional needs......insist on that and you may see a big improvement. Get doctors letters involved if necessary.

And for the mom who's daughter is dragging the chair of shame. Shame on that teacher and the admin that let her think she could do that. File a complaint and Insist on same treatment as the other children. Peace.

Aug 02, 2016
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You're Not Alone
by: Anonymous

Yes!!! You just described my 8 year old son. While he hasn't been diagnosed with SPD, he has been diagnosed with ADHD and OCD. We are currently undergoing tests/treatment with his pediatrician and seeking treatment from a mental health professional. It is very concerning, stressful, and heartbreaking to see our son go through this, but it is all of that and more for him.

I'll tell you what we don't do: we never shame him nor punish him. The best we can do is continue to encourage him to stop what he's doing when he feels an urge to wee and listen to his body. We also remind him to wee every 20 minutes or so; however, when he goes back to school, we won't be able to---this is a huge concern. Hang in there; you're not alone.

Oct 26, 2015
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Daytime wetting update
by: Mare

I was part of this chain from a while back. My son wet himself 24/7. He only agreed to wear a pull up to school in 3rd grade! Oh, the horror and shame for all of us. Wearing a pull up helped us a lot, we still worked on a potty schedule.

We had it written in that he had to make two trips to the nurse to change. He now was not singled out. He fought us on changing! Nothing is ever easy! this year he started middle school! I lost a lot of sleep, but I did gain some more wrinkles!!

Two weeks before school began and while we were in Bermuda, he used the toilet and has not looked back! I think he had been hearing for the last year that he was going to middle school and that we needed him to make a better effort and he did! Maybe the nervous system shook in to place.

We do understand that we will never understand. This is a gift, the biggest gift ever. I cannot believe that I would ever be glad that there would be a messy toilet in my house! My advice is to take it one day at a time and trust that there will be an answer. Stick with it! Our children don't want this either, people aren't kind, school isn't fair, but we are made of something special.

Find more forums to read and pull ideas from. They are a saving grace! One day at a time! Good luck!

Oct 26, 2015
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hang in there
by: Susie

I was the one who opened this original post.....6 years ago+!!! My son is now 14 1/2, and in the 9th grade. I wanted to write and give you some hope.

We were at the stage you were, functioning normally per say, but wetting and having these weird quirks. Over time, as he matured, I was able to explain to him how the message wasn't being relayed to his head from down there that he had to go, and that he had to figure out how to send the message himself. We had teachers giving him a hand signal to stop and go the bathroom. We had him going at every bell, we had all sorts of things put in place but until he truly understood and realized he needed to be in charge.....

FF to 14 years old........he hasn't wet himself since about 4th grade. But he still: doesn't like big noisy crowds, is very sensitive and emotional, fixes his socks all the time, and has been reluctant to changes. He has improved greatly though with maturity.

Hang in there...........hopefully time will help your daughter as well.

Oct 24, 2015
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so glad to hear that I'm not alone
by: Anonymous

I've been trying conventional forms of potty training with my daughter for the pat 5 years. She's almost 8 now, and she has yet to stay dry. We've gone to doctors,, psychologists, peditritians, and parenting groups. I've read so many parenting books. I used to get angry, but that stopped 2 years ago. I am frustrated, my daughter is embarassed.

Last week, I found out from my daughter that she has been required by her teacher to bring her chair with her wherever she goes in the classroom. This is to prevent pee from getting on the carpet. After hearing this, I felt terrible. My daughter is dragging a shame chair around with her through her grade two life. So I went online to try to find thin pull ups because it breaks my heart to see my child suffer, and what do I find...I find this thing called SPD.

My daughter's world collapses when she gets too hot. I can't find socks that don't cause her sress, and her responces to normal things are extreme. I feel let down by the medical community, and by her school, for not being aware of this condition . I'm not sure if having a lable really does anythingto help, but it sure makes me feel less alone (and her too probably).

Jul 11, 2014
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some more on wetting!!
by: Mare

I wrote in a while back.....My son is now 10.5 and this is still going on. His only diagnosis is SPD. He used to occasionally use the toilet, now he only uses it for number 2. He reacts to that signal late. He wets constantly and heavily. He finally gave in and allowed us to put him in pull ups. We were not happy to do it, but the stress it relieved is huge. He will not even try to use the bathroom. We have been to every medical dr, biofeedback, meds, brain & sprain MRIs. I believe he isn't very aware, at times gets signals late, he has told me it feels good. I know he is over-focused with electronics and will NOT transition well. It is so very hard to understand. Very sad to remind him all day to change and at times do it for him as he is exhausted. He is 85 pounds. I am at a loss, but am ok with having the pullups on, it is less embarrassing than him being wet. Keep you all posted!

Jul 11, 2014
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Help :(
by: Anonymous

My son aged 8 started this behavior one year ago quite excessively at school we feel to get out of the class room .
With support it was managed but has recently started again.
Henry has low functioning autism has tested with a intellectual disability is non verbal and has severe sensory processing disorder.
I have to admit it has been the one thing that has caused us the most stress he has to be supervised constantly.
He will do it in the car on the sofa on the floor
and all over his bed!
It is stressful very disheartening and totally unexplainable I even wondered if it was some kind of stim?
I would be so happy for some advice he wears pull ups
At night but I don't want him to wear them during the day.
I have tried ignoring it time out raised voice and I am also ashamed to admit on 5 separate occasions I have smacked him because I believe he is aware what he is doing.

Then I feel so guilty I was adamant I would never hit a child and I have through desperation :( I am also paranoid that it may be a emotional or psychological issue because he has been tested for physical causes and they have been ruled out.
I may offend many by saying thus but I feel so hopeless in regards to this issue i am becoming so resentful of autism and how severely it has impacted my son and our life.

Apr 05, 2014
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Update on my son.......I started this thread 5 years ago
by: Anonymous

Hi, I started this thread 5 years ago when my son was 8. Next week, we are celebrating his 13th birthday!

I'm writing to give hope to those of you who feel hopeless, and to help myself realize how far we've come.

So yes, up through fourth grade, my son wet his pants daily, he could be sitting on the floor of the playroom playing legos right next to the bathroom and would not get up to go. It was so frustrating.

After many different attempts at treatment, you can see in a previous update that he grew out of it, started hin his power to control it, who knows what? But that's done.

But I still know my son is different........if ever he has to 'go', he has a different sense of urgency that other kids, but these days, he can hold it longer. Stress affects him, as it does to all of us, as does being tired.

My son is a wonderful 'young man', a kind, sensitive soul who goes to the beat of a different drummer. He will never be the most popular or the coolest kid, but he's #1 to us. He still eats very few foods, and is sensitive to smells and tastes and is reluctant to the point of tears to try new foods. Right now, we let him be.

Wishing you all an easier time of what you're going through. Have a nice day......

Apr 04, 2014
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Same boat
by: Anonymous

mt DD will be 8 in May. She wears a pull up to bed and has daytime accidents most days. She says she can not feel it and then all of the sudden she says it rushes out. I have taken her to get an ultrasound and everything checked out fine. I have always thought it was a personality type issue with being in control. I dont want her to get picked on in 3rd grade for this. I am at a loss for what to do to help her.

Jan 06, 2014
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wetting
by: Mare

I added to this in 2010! sad to say wetting has gotten worse. My son used to use the toilet when asked to, or at least try. Now he doesn't do that. He is defiant about going in or fakes using it. He will sit on the floor with the door shut. Lazy? behavioral? We have resorted to pullups in order to keep things clean and less stressful, but it is a bit of an enabler.
He is 10 and it is awful. I can't send him to anyone's house...not that he is invited.
He has been diagnosed with spd and adhd. Not autistic. He is quirky from head to toe!
He wets day and nite. No physical ailments.

I am now defeated. completely. Pls don't say don't give up and that he will outgrow it. Hasn't happened and no light of it happening. It has caused an unbelievable strain in family, great embarrassment, poor self esteem, poor treatment from us parents to him at times. I can be hopeful for you all, my guy has been the extreme end of everything, so i pray that your experiences will be less stressful. Much peace to us all. Let go and Let God.

Jan 06, 2014
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wetting issues
by: Ramona

My son is 7 years old and still has night time and day time accidents. He claims he can't feel the need to go. I have to remind him every couple of hours to go or else he'll have an accident. He's been diagnosed with ADHD and Sensory Disorder. They are currently assessing him for High Functioning Austism. I just wish there was something to help these kids. I thought I was the only one with a child like this. I'm happy to hear there's more kids like him out there. Any suggestions would be helpful.

Nov 14, 2013
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Could it be colon?
by: Anonymous

My son is 8 years old. He was having daytime and nighttime accidents. He has sensory issues and anxiety. What turned out to be the problem was a condition called redundant colon. His colon was elongated and he was really constipated for years! It sat on his bladder and interfered with the "need to go" sensation. It went Undiagnosed for so long because he never reported stomach pain. This may be because of his sensory issues or it may be because he was so accustomed to that feeling. He was blocked for years. I know this is a long shot but might be worth checking out...

It took months after diagnosis and getting the colon cleaned out for him to gain control but he barely ever has accidents anymore. I hope it will only get better.
Good luck!

Oct 25, 2013
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Glad I found this
by: Cismith54

My autistic grandson tells me that he can't tell when he has to urinate consequently we have wet beds almost every night and occasional issues during the day as well. I feel really terrible about this so I am looking for suggestions. He has already been seen by his pediatrician for this and is presently on a low dose medication to help with no luck. We have alarms set to wake him a night to go to the bathroom but he isn't getting up to go. I think he is shutting off the alarm and going back to bed. He does receive OT at school and am wondering if I should talk with them about it. Any suggestions will be greatly appreciated.

Sep 17, 2012
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Changing tactics for daytime wettiing
by: Anonymous

Hi everyone
I wrote before about my son - now 9 years old. I am trying a slightly different approach for my own sanity if nothing else! We now approach this as something my son will grow out of with maturity and that in the meantime he needs to "take care of business" which means wearing a pad during the day (why on earth do they NOT make pads for boys I will never know - they make large pullups! they make pads them for men but they are too bulky and the womens ones are not front loaded so can leak). We are working on him wearing a pad and changing when he comes home - without exception - this has become more urgent as he started football and the tight pants etc are a disaster for a daytime wetter).

Since reading a few comments from other young people who have had this challenge D. does not feel so alone in his problem - thank you for adding to the blog it really helps to talk to someone who actually struggles with this. What approaches did your parents take helped you? - I know a lot of us get very frustrated and scared for our kids so may over react at times.
By focusing on staying fresh and clean I can calm down a bit and be less reactive. I am so fearful that the kids will find out at school and so much of his hard work to make friends will go up in smoke!

It is great to have this blog! I feel a lot less alone - thank you all for staying on, M

Sep 17, 2012
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8 Yr old Day-Time Wetting
by: Madsam

Hi, My 8 year old son has Microcepahly, Autism and ADHD. He has never been dry during the day, but is at night, remarkably! His support teacher at school takes him to the toilet frequently during the day but he still comes home at the end of the school day soaked through (and smelling of urine).

I too agree with a lot of other posts that the child simply finds it a chore to leave what they are doing to use the bathroom, they feel they are going to miss out on something perhaps. That's my son. He always says "I dont need to go" and then wets himself. You cannot physically make a child sit on the toilet at 8 years of age. It is really tough. Doctors and specialists are hopeless, only wanting to give medication to 'shut down' the kidneys for a time to stay dry during the day, but they informed me that when this medication wears off, the kidneys will go into over-drive and the child would be pee,pee,pee. Not exactly the answer so I declined this. My son has sensory issues and with his neurological disorder too, I really don't know if he will ever be dry.
But it helps to know there's others out there in the same situation.

Sep 08, 2012
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Growing up wetting my pants
by: Anonymous

I am a girl who was wetting my pants all the time at school as a child. It was worse when I laugh. Even if I went to the bathroom and empty my bladder. If someone made me laugh I would wet my pants event though I went. It was like I never went to the bathroom. I was able to go through elementary school by hiding it because we wore uniforms that were dark. When middle school started we had moved and no more uniforms so I was embarrassed when this happen. I had special permission to get up from the classroom and go to the bathroom with out a pass. There was several times that they dried my clothes in the Home Ec room. It is very hurtful when other children found out they don't understand that it is a medical condition.

My mom took me to doctors ran test and could not come up with anything except putting me on medication. My mom didn't want to put me on medication so she ask the doctor about this excercise that I could do. This exercise would help strengthen the muscle so I can control it better. When I went to the bathroom I would pee and then stop and pee then stop. I know you have a boy but once he is able to understand how to stop and go maybe he could strengthen his muscles to help him. It work for me I was no longer peeing at 16 at school. I am an adult and not longer have that issue but once and while I still do the exercises.

I hope this exercise can work for boys. Maybe if he strengthens his muscles he won't have the dribble leak and will know he is full and go. He may not be getting the full feeling because he is constantly leaking throughout the day.

Aug 13, 2012
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wetting
by: Mare

I am going to work harder yet at the reflex integration exercises. Doubling up on the push to get this resolved!

I contacted, via email,a chiropractor. I asked if they worked on reflex integration & spd. I am sure they do. I don't think they take insurance. If I can work out $, I will give it a whirl. At least go in for a free consult.

Will keep you posted. A lifetime of this isn't what I had planned!

Aug 13, 2012
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Update now he is 9yrs
by: M.

Hi - well I know it is no consolation but my son has also not made any progress. I truelly believe he does not Feel the urge and when he does he is so focused that it would take a crowbar to extract him from what he is doing. He has started football which is 2 hours and very hot - so he drinks like crazy and ...yes pees in his uniform - thankfully the cup does a good job at holding in the worst of it. I am trying to keep calm and focused - we have other issues to work on and as long as he takes responsiblity to change and wash his clothes we are not making a big fuss - I am praying he will grow out of it. He has gone from huge accidents to collective dribbles. Please know that you are not alone - it is so frustrating and I am terrified a kid will see or smell something and announc it - that would destroy my boy who finds making friends hard enough.

We did talk to the doctor who put him on a malox for constipation all that did was make him soil himself! He does not read his body so he does not read needing to go more frequently.

As much as I hate to say it but I am beginning to believe that it is a maturity issue and when they get old enough to preplan and understand the ramifications of being publically wet they will find a way to manage the problem.

I dont think it is attention seeking my son is devastated that he cant get control. he cant stand any watches etc on his skin and the beeper think does not help because they are already wet by then!

Let me know if you find the miracle that will save our sanity! nice to know we are not along though... best M

Aug 13, 2012
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8 year old wetting
by: Mare

Hi, Hi,

Nothing new on the wetting! My boy wets several times daily, his transitioning behavior is horrible. We are working on primary reflex integration since Feb. with no change. We started listening therapy in July. Every now and then I think there is some good change. He is supposed to do it for 30 mins. twice a day. He won't. It takes me over 20 mins. to get him to do one session. He is a full time job.
And I already have one!

I don't know where to turn. Besides turn around and head to the airport and head to an island in the sun!! ha ha

Jun 11, 2012
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8 Year Old with Day time wetting
by: M.

Mare - this is so like my son. But it is not just electronics - anything that has him enthralled and really focused - it could be playing out with his friends (doesnt want to leave or he will be excluded, miss something etc - lot of reasons). The total focus of video games and movies I agree are really tricky - we tried timing his play and setting up pee-breaks to help but I am not sure it did. He would still "tinkle" even though his bladder was empty. the other thing I did consider was whether he was not quite finishing in the bathroom - He has a difficult time in bathrooms and we think it is related to the accoustics - the sound echos and can cause him to get scared or disoriented (noisy bathrooms like at school) - on the other hand he loves the sound it makes when he is at play in the bath and on his own. This "distracted peeing/pooing" (I made that name up !) would explain the latent dribbles and accidents when he had just been, and the little soiling in the pants when he is rushing to finish.

To be honest I dont know if it is the rushing or the not making it in time or both! but definately it is how he reads his body signals - He says he goes to the bathroom when he is "farting" and nothing happens - is he rushing? He has a theory that he needs to fart 6 times before a poo comes (my lovely boy has lots of theories :).

My son came to me at 5years of age from a difficult foster home so there will be other things at play - but it does all sound so familiar - maybe age "cures" this - we have reverted to pads (thin ladies ones to catch the dribbles and smells) but he is so inconsistent with those - he doesnt want to get caught wearing them understandably - I try to use them at home to save on laundry.

Sorry you are still struggling also I will let you know on the Miralax thing but frankly if he does not take time to finish his business this isnt going to help. I wonder if there is something out there that heightens the feeling of needing to go without actually causing an increase in need?....M

Jun 11, 2012
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More on the wetting
by: Mare

Here is an update.

My 8 year old has been receiving OT from school since Nov. and private OT weekly since FEb. No real progress. We have been doing a moro reflex exercise since Feb. There has been no change. My OT said that perhaps we would see him not sucking on things to see if he is making progress. He has taken up sucking his fingers. Crazy!

His wetting always occurs when he is on electronics. Told this is because the stimulation is intense and they don't sense much.
Went back to psychologist who is helping me set up a plan to work on transitioning from electronics to anything else. This is not in place yet. Not optimistic about anything at all with all of the roadblock that have been in place. Wish it was better news.

Jun 11, 2012
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8 Year Old with Day time wetting
by: M.

My son constantly tells me that he does not feel the pee coming and he frequently ignores the warning signs of needing to "take a poo" - he ignores breaking wind until the last minute and ends up soiling himself a little. His peeing is small amounts throughout the day generally which leave him smelly and his skin gets sore from time to time. He is definitely worse when he is really playing or really tired. He does not want to stop what he is doing and then it is too late.

I had heard that constipation can play a big role if the kids hold their poo then it puts pressure on the bladder and the bladder - leaks all day long until the kids clear out the bowel. We took him to the docs today and he said to put him on Miralax a spoon a day (stool softener) - so it seems there might be some true in this - I will try it and let you know. It is nice to know that we are not alone his is such a heartbreaking one especially when you know your own child smells and that will push other kids away!

best M

Jun 11, 2012
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Hang in there!
by: Susie

Hang in there. My son is now 11 and thank goodness no longer has this wetting problem. We found success in schedules- the school class bell rings every 45 min and he had permission to get up at the end of every lesson to go. We worked on his self image with it building up the thinking in his head that he has control over his own body. Took a while and lots I'd positive talk to undo the explanation that his mind wasn't getting the message as it should. He did it in the end. He occasionally has accidents like I'd he's out riding his bike with friends and thinks he can't stop. Or sometimes b

Accidents in same situation but there's nothing to do. As I said, hang in there. This too shall pass, even if it feels now like it never will. ---Susie, the original mom who started this thread.

Jun 11, 2012
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SPD and bed wetting
by: Anonymous

I live in uk and have a nearly 8 year old son with spd, dyspraxia and low muscle tone. He was a nightmare to potty train (did not know he had these issues at this point) and in the end just before he started preschool at 3 I stopped him warning nappies. He carried on having day time accidents until he was in y2 but still has occasional accidents still now. He does not always seem to feel the need to go until it is too late (just as I am writing this he has just told me he has peed on his chair but has cleaned it up and he is coming to end of y3!!). He is worried about going to school now today as he dosnt want to keep wetting his pants. He has always had good days and bad days but this last week he has been havings several accidents a day - yesterday he wet himself about 3 times in about an hour. He has been off school as it is a holiday, he was not well during the week and he has been trying to sleep without pull ups at night this last week - think the latter has something to do with his day accidents - he has never been dry at night but over last week has tried really hard - he has been going through night ok and only seems to wet just as he wakes up. I have given him lots of praise and said we will find a solution to this together. He was waking up about midnight and peeing first few nights and could then get through night but he was also going into night terrors, which is why we are not keen on waking him!!. Will have to keep a diary and see how it goes!!

Feb 14, 2012
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8 Year Old with Day time wetting
by: Anonymous

My husband and I were just discussing how frustrating this disorder is - so invisible to many but heartbreaking for us and our son. He says exactly what others say " you dont understand Mom I dont feel it" but he is also so last minute about going to the bathroom - I guess if he cant feel it coming down then it is always a rush. He is frequently wet during the day and also does not smell it (phew - dont know how). Has anyone heard about constipation being a connected issue. If he is holding his urine back and his poops are the muscles all misfiring? - anyone understand how this all works. My son is also acutely aware of the teachers identifying him as different - he hates being singled out for special pee breaks etc. Is there any evidence to suggest that as he matures he will understand better how to handle the situation. So do we breath deeply and calmly and weather this storm for a few more years or do we NEED to intervene at the risk of making him feel worse than he already does....(he is a big 110lb 8 year old so this makes it more difficult people expect him to have control!)

For what it is worth knowing we are not alone is a comfort - thanks for all of you who bared you souls..

Jan 09, 2012
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Reflex
by: Anonymous

Hi,
I haven't been ignoring you, I simply haven't logged on! My guy is in a co-teaching class. He receives some push in from the special ed teacher. The entire team is a dream. It is the CSE who is keeping the tight reign on the $'s. His attention is a huge problem. I haven't started OT yet. We now have different insurance. I have to get on it. He requires the reflex therapy, plus therapy for spd.

Since the district dragged their feet in all of this, we are another 1/2 year behind in school therapy. He just began that in Dec. They are working on the basic fine motor skills. The district has offered to have my OT come in to give two 1/2 day classes, called professional development. She is to talk to them about reflex integration. It is to give them a better understanding of what he is up against. They won't be doing the exercises that are to do assist the integration. It is my hope that the school OT will actually work in some of these exercises. Trouble is that the reflexes are to be integrated one at a time.

Every step of the way has been very difficult. His behavior is troublesome, with the low tone, he is weary, yet I cannot let him off the hook on everything.
I could go on for a week about it all. Anyone reading this understands the situation and frustrations!

I have to get going. He is beckoning for me to help him brush his teeth. Then the dog needs me! Another fun day!

Jan 09, 2012
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Thanks for updates
by: Deena

So grateful for updates from Susie and Mare. There is hope!!! My son, too, has low muscle tone (diagnosed at 18 mos) that with the SPD makes for quite a challenge.. Will also look more into the reflexes. Also saw urologist who gave meds, didn't work and realized it had nothing to do with urology...it's neurology. Next step is neurologist. Have run into to many roadblocks trying to get OT through local therapy center and insurance. Will be getting school district eval soon and just found a new therapy clinic. Maybe they can provide insurance with the "right" codes so we can get services.

Nov 07, 2011
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frustrating....
by: Anonymous

Hi Mare, sounds like what you are going through is quite frustrating. I used to work in the public school system in S. Florida, but at the preschool level (special education). I remember the frustrations from all sides. The key point that I remember was that for something to be covered by the school and the school system, it had to affect the academics.....but at the same time if the kid's diagnosis warranted social emotional goals, then that's where the other things came into play......

Is your son in a regular class or in special ed? IF you don't mind me asking, what is his 'label', or does he have one? Unfortunately, much of the key to getting services is knowing how to word things in the right way on the proper forms and evaluations......

I would say though, that if the school doesn't provide, then insurance should, no? Wish I had more ideas to offer........keep us posted.

Nov 07, 2011
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wetting
by: Mare

Hi again,

A bit more to the story. The school was expected to give my son OT to integrate reflexes which would help with the wetting, attention and sensory issues. They are now not doing that. I was told that is a medical issue, not academic. They believe he is doing better, even though he has wet in class 4-5 times. Attention and sensory issues are still a big problem. They think co-teaching/special ed are going to help that. The social aspect of wetting isn't academic and since it has eased up, they aren't responsible. I have to look to insurance for it. We sat at the table and we discussed having an outside OT train school OT in reflex integration. They talked this over with lawyer and they aren't required to do this!

Any suggestions anyone? We are in upstate NY.

Nov 04, 2011
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by: Anonymous

Mare, hang in there.......I keep telling myself that if could get over THIS, then he'll be able to do anything in life! :)

I'll check out those reflexes....does sound interesting.

Wanted to mention to you too that my son also didn't used to change, even would argue with me that he wasn't wet when he was, and tell me that I was the only one in the world who could smell the pee.....go figure.

Take care...........

Nov 04, 2011
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An update from me too!
by: Mare

Susie, delighted your situation has greatly improved. We too have moved along some. I have found a terrific OT, who evaluated my guy this summer and we are waiting for therapy in school. However his therapy is specific. She found him to have primary reflex issues. One specifically related to wetting....Galant Reflex.

He has low muscle tone as well and his senses don't allow him to know he has to go nor that he has to change. Some of that is behavioral. He doesn't want to get into trouble. We reprimand him for not changing, not for wetting. He often knows he is wet. It is a difficult balance we have to find with him.

School has been great. They remind him to get to the bathroom before he leaves the room, when he doesn't go, he will wet! When he has a cold, he wets a lot. His senses are very out of whack.

At the urologist's suggestion we did meds and took him for
bio-feed back. Don't do it. Not a pleasant experience. Drugs didn't work. His tone and reflexes are the trouble, no meds would help.

We are waiting on the therapy and I will keep you posted on how that goes. The integration of the reflexes are expected to also help with his attention. Read up on primary reflexes, it is fascinating. Of course, it adds yet another issue to the list you already have for your child. but hope is there for me! a little anyway! Stay tuned! :)

Nov 04, 2011
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UPDATE......... :)
by: Susie

I'm so thrilled to come back here and update on my son. I was the original poster here, when my son was 8. He is now 10 1/2 and is doing GREAT! Last year, during 4th grade, we had our usual parent/teacher/student conference in the middle of the year. We had started the year off with a system where the teacher(s) would give him a sign to get up and go at the end of each class. We worked with him on remembering to go with the bell at the end of each lesson. It worked some days, and others not. In this teacher conference in December, he expressed that he did not want the teacher to do the sign anymore to him because he was worried that other kids were starting to notice. She was understanding but firm and told him that he needed to get it under control. We were at the point that we all felt that he was being lazy with this 'diagnosis' and using it as a crutch. He had overcome some other things and just needed the support to believe he could control his body.

Long story short, HE DID IT! She had told him that if he could work on going after each hourly bell, then she wouldn't bug him with the hand signal. It worked. He is now in 5th grade and hasn't had a wetting accident in 10 months! It feels so good............

Every so often, he waits to long to go to the bathroom for a BM and then we have an issue, but it is usually when we are in a park or somewhere that the bathroom isn't so accessible. But that happens so rarely that I don't feel it's a big issue.

Bottom line parents, KEEP THE FAITH, keep talking to your kids about the issue, and tell them that you believe in them. With the right external reminders, even our kids can move past this feeling that they are not in control.

Nov 03, 2011
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You're not alone!
by: Deena

I just figured out my 10 year old has SPD. He was diagnosed with low muscle tone when he was 1 1/2. We were able to get dry nights with alarm last year, but he still wets during the day. Seeing specialist and on meds, but getting only minor change. Your posting has helped me understand that it isn't just a behavioral/medical change issue. It is the combo of low muscle tone and SPD and we may need to investigate other options for lasting results.

Discouraged that there were no postings for tangible things to do to help. Just like the other Dena, many, many tears and am looking for REAL HELP!

Jul 06, 2011
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8 Year Old
by: Anonymous

Glad I found this forum. My son is 8 and has high-functioning autism. He has been pooping in the toilet since 3-1/2 but has always had day & night accidents. He releases a little urine throughout the day until he smells really bad by the end of the day. He doesn't seem to care if he's wet. When I ask why he does this, he says he doesn't know how. It just breaks my heart. Has anyone tried "bladder training"? I've read other forums where people have tried this. Seems to be a common link though...on one forum it was ADHD kids. Interesting, as ADHD is also on the autism spectrum as is SPD.

Dec 02, 2010
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Toileting Trouble
by: Mare

You are NOT alone. I have ruined more makeup and have hidden behind my sunglasses regularly because I cry over my son's wetting etc. He turned 7 yesterday! He wets himself at least once a day. My water bill has tripled. He has taken up wetting the bed just before he wakes. He has pooped several times this year. (twice in school)

We do not have a formal diagnosis, but sensory and attention issues are our focus with the behavioral doctor. I am pushing for OT at school so that we can make him more aware of his body. He doesn't go to sleep until very late. He seeks the big squeezes, tugs hair, squeals, very inattentive, low tone, very fatigued and more.

I watch my son struggle every day. I struggle. I cry for him and for me. I didn't sign up for this. I expected healthy and happy. I didn't expect to cover up for him, explain him, avoid situations. I am happier after I read these postings. Sometimes because someone else's story is more complicated than mine, or someone's is like mine! I feel understood.

I thought I was a compassionate woman before I met my little man Jack! But I have great feeling for people who are trying to keep the lid on the pot. kids, their moms and families!

As far as the peeing goes....stock up on Tide, don't leave home without a backpack of spare clothes and have a blanket on the couch where your little one sits! Peace!

Oct 09, 2010
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8 yeat old autistic son still wets pants
by: Anonymous

My son is a highly functioning and on the spectrum. We had lots of issues even getting him to use the toilet and finally he is good about bowel movements, but he still wets his pants at night and during the day. He still can fit into pull-ups so nights are not as big a concern, but during the day he sometimes will do fine, other times he will not. We have asked his teachers to make sure he uses the restroom frequently (every 20 minutes or so) this usually helps. We purchased a basic sports watch that has three timer settings and can also repeat an alarm at any interval. It was not super expensive and when he wears it we can adjust the time up or down if it turns out to be a good or bad day. If he is very focused on what he is doing he is more likely to not use the restroom. He also seems perfectly happy to be sitting in wet pants, so we have to check with him when possible. Watching the amount he drinks can help sometimes, also his favorite fruit is apples - if he eats a bunch he seems to need to go more often. This is a non-scientific observation though. Just like the rest of the posts - we are all guessing so just trying give as much input as I can.

Sep 27, 2010
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Son With SPD/low muscle tone wetting pants
by: Anonymous

Hi Susie!
I know you posted this a while ago, but I googled "SPD and peeing pants" and your post came up! :) I have a 6-year-old with SPD and low muscle tone. He has been having problems with peeing in his pants or not finishing before he pulls his pants back up. I thought it was just him being in a hurry and not wanting to stop what he was doing, but everytime I ask him about it he tells me, "I didn't feel it until it was already coming out." I am encouraging him to use the bathroom at certain times during day, even if he doesn't have to go, as an intervention. We are also working on core exercises. Have you found any suggestions that have been helpful?

So encouraging to know he is not alone! :)

Thanks,
Dena

Jun 13, 2010
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My six year old not pooping but peeing
by: Anonymous

Thanks for your feedbacks. I plan to try a few new things. My son has pooped a few times in the toilet and thank goodness he can go pee. Still, it's work to clean him up and give into pull-ups b/c I have tried everything. His special ed. teacher told us give him time. I feel the more time I am giving him the more its stressing me out. So...I am hoping he will poop in toilet and that I may not give up. He is such a sweet boy and not his fault. He has a few developmental delays, but we all have complete faith he can do this and needs our help and support continually.

Feb 26, 2010
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I was told to try a chiropractor
by: Anonymous

I am going to take my son to a chiropractor. He has problems with wetting during the day also. A lot of it is that he does not want to stop what he is doing but I want to try the chiropractor also. I have been told that many times these children have something pressing on their bladder and a couple of adjustments from a chiropractor can help.

Feb 23, 2010
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8 yr old son and wetting
by: Anonymous

I had a strong feeling that my son wetting his pants at 8 yrs of age was related to SPD. If he does not go to the bathroom before bed, it's a guarantee he will wet. But over the past 9 months or so he has wet his pants during the day. I have asked him why it's happened. He wont answer me, he usually shuts down. I began to wonder if it was just laziness and he wasn't taking the time to go to the bathroom because he wanted to keep playing...this hasn't been a problem since he potty trained at 3. He has said it just comes out. I am so frustrated with this because I don't want my son to suffer socially if this should happen in school. He has wet his pants while in the car and never said anything. He just goes about what he's doing with wet pants. He's embarrassed by it and has hid his pants in his dresser before. I have gotten frustrated and cried and yelled. Is it one more visit to the doctor? How does he get help for this? I've been on top of OT with his school for fine motor skills...how do I help this relatively new issue of wetting his pants?

Feb 08, 2010
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6 1/2 year old with SPD not potty-trained
by: Danna

Wow--its great to find a place where other parents are struggling with the same issue.

I have been working with my 6 1/2 year old since age 4. He actually was very successful at a special camp in Chicago called Tuesday's Child a couple of years ago. Their methodology is as long as kids are having accidents they need to go more frequently. Sometimes every 20 minutes and then extend the time as they are successful. They suggest taking them to the bathroom during a very busy period when they are very involved in play for two reasons: 1. because that is usually when the will have an accident due to their intense focus on their play and 2. because they don't like to stop what they are doing and you simply tell them we won't have to do this anymore if you get to the potty on your own.

He was virtually BM free and almost urine-free (during the day only still wears pull-ups at night) until just recently and now he seems to have regressed. I know his father (who does not live with us) screams and yells and spank him and I told him not to, so there may be a lot of anxiety because of this. We are on a waiting list to see a Behavior Therapist as I am of the belief that it may not be physiological.

I also have tried countless methods to nip this in the bud. The one suggestion that did work for BMs was sitting on the toilet every morning about the same time for 15 minutes along with a MILD constipation reliever. I also purchased a "timed-timer" which my kids really like. My son would sometimes have several BMs several minutes apart during this 15 minute time period.

My son also has very low muscle tone and is being seen by an OT and has been since 10 months old. I also have him in therapeutic riding and I am desperate to get his core stronger. Thanks for the suggestion on the strengthening exercises we have an appointment tomorrow so I will get on that right away.

He is only in kindergarten but already kids are making fun of him and if this doesn't get taken care of soon he will likely suffer even more social/emotional issues from other kids.

God bless all of you, I know how hard it is, how embarrassing it can be, how frustrating it can be, how you blame yourself time and time again, but these kids are so special and its important to remember that.


Nov 24, 2009
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i understand
by: mm

Our son is almost 9 and has PDD and sensory issues. I bowel trained him at 8. He will wet his pants if I do not remind him to go. Boys in general I think don't like to stop what they are doing, but especially my sensory child. We did bio-feedback as well with no progress. I was able to help him thank goodness and he is on Miralax for the constipation.

I believe because of his low muscle tone and sensory issues he still has accidents. I wish you the best of luck. Try a timer if he can tolerate it, or gentle reminders.

Nov 19, 2009
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Bed Wetting
by: GrantD

Hi, my daughter is 7 yrs. She has not had a problem with bed wetting or daytime wetting but approx 5 months ago she stared wetting at night then during the day. It was not due to stress or infections. If you haven't had your doctor check for infections get that done first. This is what we did and so far it seems to be improving;

We are getting her to drink more during the day to increase her bladder size

We remind her to go to the bathroom more regularly and get her to go at the start of each break at school and end of lunch break.

We get her to do her wee then wait 20sec and try again - this helps girls as some can stay inside and leak later, maybe it will work with boys too?

She doesn't have SPD's but struggles to keep focused on drinking and regular breaks. We just had a weeks holiday and were able to 'enforce' her drinking and bathroom breaks and this has helped. Obviously at school there are a lot more distractions and difficulties keeping youngsters on track. If you can get the teacher sending him off to the bathroom that would help but they generally have other priorities.

Good luck.

Nov 18, 2009
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Like Mother like son
by: Victoria G

I am not sure if this will be of any help. As a child I know that when I got busy I did not like stopping what I was doing to go to the bathroom and so I wet my underwear (how frequently I am unsure) until sometime between 8 and 9 years old. It drove my father crazy which didn't help. My son has had a similar issue but with bm's. Especially at school and especially in Kindergarten and Grade 1 he would come home almost daily with heavily soiled underwear. Yet over the summers the problem seemed to dissipate. He would swear up and down that he couldn't feel anything, or that it would come too quickly.

This year is much better but a number of things have changed. Firstly, for the past year and a bit I have been treating this as a time management issue and not a potty-training issue. I have told him at school to go to the bathroom at all available breaks and before and after lunch/recreation break-time.

Secondly, I have removed my emotional attachments and issues over the problem -- i.e. I never get upset over what has happened, I only help him get changed when he needs it and offer love and I try to provide a lot of encouragement when things go well. I am sure that many things have contributed to the improvement, but I certainly know that once I stopped having an emotional reaction to his soiling his pants, things got slowly but surely better.

Jul 27, 2009
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yes I feel your pain
by: Anonymous

my son is going into the 2nd grade and we send clothes with him to make sure if he has a accident he will have a change of clothes . the doctor told us it was anxiety and the anxiety cause a over reactive bladder sorry nothing you can do about it, but encourage to use the bathroom even if they don't have to go. but that didn't work for use at least once a week he was having accident in school seems to be fine most of the time at home but it still does happen once in a while.

Jul 25, 2009
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My son has the same problem
by: Anonymous

He will be 8 in September. It took him what seemed like forever to control his bowels during the day, and still wets his pants a little every day. We just started OT and the therapist said she has had some success with another boy using some reflex exercises: spinal galant and perez (?) The theory is that these children have not overcome, if that is the right word, these reflexes in infancy and so are not able to advance. We do the exercises with our son 3x a week, plus he sees the OT once a week. You said you did OT, I don't know if they tried this. Good luck, I know how you feel.

Jul 24, 2009
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Similar Problem
by: Anonymous

I have a five year old grandson with SPD. We've made progress with him using the toilet to do his BM's but it was a struggle. He can't seem to tell us also that he has to urinate. We put him on the potty approximately every 1 and 1/2 to 2 hours and I can keep him dry that way. I've tried his big boy underwear, but he's had a few accidents. He will start kindergarten in the fall and I am concerned that he is not toilet trained. I really don't know what to advise in this situation. It seems as though you've tried every outlet. I make him go potty before bed and first thing when he gets up. Most of the time he is dry. I pray every night that these children with SPD will grow into adult hood being able to function and be independent. My grandson is close to "normal" but he has issues that he appears odd to other children and adults. Good luck and God Bless!

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