Nonverbal Learning Disorder, low muscle tone and potty learning

[bbsc]

Hi everyone I have a question about potty learning, but I'll give a little background first.

My son is 5.5 and has recently completed the assessment process through the local school district. They labeled him as having a nonverbal learning disorder and low muscle tone. He's has an IEP now, and is signed up to attend the special ed preschool in the fall, not K. Even though he has attended two years of regular preschool. In my opinion, he has mostly motor (gross and fine) issues, with some social skill issues too. He has trouble feeding himself unless it's finger food and getting dressed too. Those are the reasons I asked for the assessment, plus the diaper issue. He is in diapers full time. At the IEP meeting, the psychologist really gave me a hard time about the diaper issue.

We have worked on potty learning, off and on for the past two years. He's peed in the potty a few times, and it's been six months since the last potty success. I'm not sure if he is getting the signals from his body about needing to go or not. Or if the issue is a strong attachment to using diapers. At the last ped visit, she suggested just going cold turkey, no diapers except for night time, which we have tried. Many tears are the result, and a lot of pee on the floor. I have done a few trials of diaper free, cleaning pee off the floor and encouraging potty time.

He's actually wearing underwear right now! I bribed him with a trip to Red Box to rent a movie. Not sure if that's the best idea, but he's so resistant to the idea of not wearing a diaper at all I figured it would give it a try.

Does anyone have advice for us in terms of the potty learning? Should I try the cold turkey method again? Or something more gentle?

TIA!

[bri276]

Does he like M&Ms? There are "natural" ones at Whole Foods if that's an issue. That's what really was the catalyst for DD (she's very speech delayed, also has gross motor delay, is almost 5 and still wears pull ups outside the home but is 90% PTed while at home and stays dry all morning at preschool). Also putting her on the potty (or regular toilet) every 30 minutes or so until I learned when she was most likely to need to go. Toilet paper and flushing the toilet also seem to be "fun" motivators for her.

But it makes sense that children who are delayed in other areas are going to need extra time to learn this skill as well, so I don't think anyone should give you a hard time about it- if they want to be actually helpful and make useful suggestions, that's great, but they shouldn't assume it's your FAULT that he's not potty learned yet!!

[bbsc]

He's not really a big eater, even candy. I have tried to bribe him with candy, and no luck so far. How does it work, you tell the kid, "sit on the potty for one minute, and you can have an m&m" or what? I can't get him onto the potty willingly at this point, it's been about 6 months since he would do it. When I try the candy bribe, he just says no.

When you were taking her every 30 minutes, did you carry your daughter to the potty? Would she pull her own pants down? Did she go willingly? Back in January when my son was more open to potty learning, he needed help getting his pants down, but he would walk himself to the bathroom. He would sit on the potty for between 1 minute and 30 minutes with me reading books, singing songs, etc. Only if it was his idea though, if I told him it was potty time, he would object strenuously.

I feel like he is not quite ready, but I have the feeling I will be getting a lot of pressure in the fall.

[bbsc]

Today he's been diaper free all day, and only three pee accidents on the carpet, plus a poop in underwear. But he peed outside in the yard a couple of times too! Which is a good start, in my opinion!

[CarrieMF]

Can he tell you when he needs to go?

Have you been able to figure out any specific times he may consistently go?

Will he drink out of juice boxes?

The boy I work with(8) is not potty trained. When he was in kindergarten they started working with him. He would refuse to sit on the toilet. They would give him a juice box(he has a STRONG! oral need to eat things) & hold him down on the toilet. Once he realized sitting on the toilet=juice they wouldn't have to hold him as much. He didn't have any regular times he'd actually pee on the toilet but #1 step is getting him to sit on the toilet without fighting to keep him on there.

He was in K for 2 years & is in Grade 3 now. Part way into his 2nd year of K he moved & went to a different school until this past fall when he came back to this one. He will not tell us when he has to go, we take him twice a day. In his other school they took him to the bathroom every hour. For us it is unnecessary to take him every hour. Our morning trip is not usually successful, but his afternoon trip often is.

When we take him to the bathroom he sits on it for 5 minutes. Sitting there longer isn't going to "train" him to go, it'll be coincidence if you catch him peeing then & most likely will do nothing but frustrate him & make him not want to go there. At first you may need to take him every hour, until you start to notice a pattern on when he's actually peeing.

A big part of our issue with not getting him trained is that at home his parents don't reinforce anything. They let the kids do whatever they want to. As soon as he gets home he strips down to nakedness & mom "thinks" he pees into the bathtub but she really doesn't know.

Does he use pecs at all? Having a story strip of expectations when in the bathroom can help him.

[bbsc]

He's never been willing to let me know before he goes, though he will ask for diapers if he doesn't have one on. His timing seems random to me, sometimes his diaper will stay dry for 3 or 4 hours, but the other day when he was diaper free he was going pee two or more times per hour. He refused to try sitting on the potty, but did make it outside to pee in the yard a few times. Most of his pee landed on the floor in the house though. And he pooped into the diaper I put onto him for bedtime within about 30 minutes during the evening routine of teeth brushing and story time without me seeing any signs he was going, and I was right there the whole time!

I'm not really comfortable with forcing him onto the potty, and holding him on it. He likes juice, but he would not be willing to drink it while sitting on the potty. He would be crying to much.

I looked up pecs, and I do think he would respond to something like that, where all of the steps are all spelled out, like pull down pants, pull down underwear, etc.

He's been ill the past couple of days, so I've been giving him a break from the stress of wearing underwear. It is really stressful for him, it seems.

Thanks for the suggestions so far!

[CarrieMF]

He refused to try sitting on the potty, but did make it outside to pee in the yard a few times.

Have you tried teaching him to pee standing up? Put some food colouring in the water so it'll turn when he goes or he can "aim" for cheerios.

the sequence we have for the boy at school is pictures for

pants down, diaper down, sit on toilet, wipe, stand up, pull diaper up, pull pants up, flush.

It took me 6months to realize I forgot to put a picture for actually peeing on it.lol

[lerlerler]

OK, I know it LOOKS silly and you may chalk it up to "silly expensive baby crap" but THIS thing worked wonders on my son who HATED the potty

http://www.peterpotty.com/

it turned my boy's entire PL experience around

Full disclosure - my boy is not SN, I just stalk the SN board for an extended family member

[bbsc]

Do little boys need to hold on and aim when they pee standing up? That's what I've been asking him to do, when I teach him to aim into the toilet. Or do they just aim from the hips? I'm a single mom, so I really don't know the exact mechanics for the peeing standing up. When he wants to pee outside, he takes everything off to do it, and just stands there in a wide stance. No aiming at anything, and he needs a toweling off when he's done.

For the picture sequence, I think that I will just want to add wash hands at the end of yours. He can be pretty resistant to hand washing, but it it's in the pictures, that might encourage him to do it more willingly.

I tried putting cheerios into the water, and it made him really upset! But it's been a few months, so maybe it's worth trying again. I'll try talking to him about it first. But he loves when we put food coloring into his bath water, so that could work.

I'm not convinced that the little urinal will help. He's never seen a urinal, as far as I know, so that might make it a little hard for him to grasp the concept.

Thanks again for the suggestions!

[CarrieMF]

For the picture sequence, I think that I will just want to add wash hands at the end of yours

We have a handwashing one above the sink. No point in putting it across from the toilet since the sink isn't there, yk.

the handwashing one is

turn tap on, wash hands, get soap, rub hands, wash hands, turn tap off, paper towel, garbage.

[bbsc]

Yes that does make sense, since he's not at the sink while he's peeing. I think that my main issue now is trying to figure out how to make him think that the potty stuff is his idea. I'm having very little luck at this point, can't get him to sit on the potty at all, and I really hate using physical force with him.

I still have to hold him down most of the time to brush his teeth, and I don't want to add another to the routine.

[CarrieMF]

The boy I work with I had to hold down to scrub his fingers with a scrub brush(feces issue). I've done it every morning M-F since November. He fought me every day, but there was no option. If it took the entire time I was to be there for it to get done then so be it but we were doing nothing else until his fingers were clean of feces. It would take a long time to clean his fingers. The shorter his nails the harder it was, therefore it hurt more. He stopped fighting me after about 2 months. He did fight me on Friday, but his mom had just cut his fingernails really short again. He had no motivation to stand there & just let me do it so he figured why should he do it. For some things the outcome is not worth the fight, for other things it is.

Does your son have any motivations you could use as rewards. A special toy, candy, stickers etc that you could give him when he sits on the toilet. Each time he sits on the toilet(whether it's willingly or you have to physically put him on there) he gets his reward. It doesn't matter if he actually goes or not, as soon as he's sitting on it he gets his reward. It has to be an automatic thing, his bum hits in a sitting position his reward is in his hand. If he sits for 30seconds, give him another reward. If he sits for 1 minute he gets another. As soon as he gets off, or tries to get off the reward is removed. It may take a couple of months but once he realizes I sit here i get my reward he'll start sitting longer. You can lengthen how long he needs to sit before he gets his reward. It can turn into he has to sit for 30seconds before he gets his first one. The rewards he gets for sitting on the toilet are ONLY for sitting on the toilet. THey are not brought out for any thing else. If he has a favorite book it is used ONLY for when he sits on the toilet. You may need to change up his rewards too so he doesn't get sick of them. Once you get him sitting on the toilet, then you can move onto rewards for letting you know when he has to go(since he needs help with clothes) and then actually going on the toilet.

Now if he's like the boy I work with & has no motivation(or his switch so frequently) it is harder.

I'd try it with the lid down first. Some kids are very scared of the hole in the toilet. If you have a potty lid you could put that on, it makes the hole smaller & not as intimidating. Or you could just use a potty seat instead of the regular toilet.

[HealthHomeHappy]

We're trying PLing this week too, or at least trying to. The first few days we did a story line
http://www.do2learn.com/picturecards..._toileting.htm
And we would look at them before going in the bathroom for the first few days, to get the routine. We set a timer and sit for 3-10 minutes, depending on what I think her attention span/needs are. I'm having her sit on the baby bjorn potty, I think it's better to have something smaller, plus I want to be able to bring it with us.

The first few days while we were getting the routine I had her wear pullups, now we're running around nakey (she's 3-1/2 developmental delay/low tone/spd, development about 18-24 months, language is lower).

She doesn't mind sitting on the pot. I reward her with dates (the food, not on the calendar) for going, and lots of verbal praise that she likes for sitting on the potty. She's never responded very well to bribes, which is why all my previous potty training trying hasn't worked. She does respond well to routines.

I'm working with her little brother at the same time, I think that helps a lot as well. He's easier to bribe, and she's more likely to copy him than take directions from me

I'm curious how long this will take. I did buy a book on it- Toilet Training for Individuals with Autism or Other Developmental Issues. Our OT would ask how pottying was going, but her only suggestion was to bribe her with food. That doesn't work really well for my child- so I bought the book and so far it's going better than my previous attempts.

[CarrieMF]

how long it takes depends on the child. The boy I work with was supposedly going to the bathroom on his own in kindergarten. He was in k for 2 years at the school he's in now. However he regressed, whether due to mom not reinforcing anything at home or the change to a new school(and then back to his first schoo), or just because who knows but in Grade 3 he is no longer going on his own. With autistic kids if they don't have the motivation to do it they won't do it. With our boy I really think he does not care if he goes to the toilet or if he lays down & lets mom do everything for him. She will do everything for him instead of making him do anything himself. She didn't know he could put his jacket on himself.

[HealthHomeHappy]

Originally Posted by CarrieMF

With autistic kids if they don't have the motivation to do it they won't do it.

That's the truth! Do you think having it be as part of the routine is the best way to go? I don't think there's any bribe in the world that can motivate this child of mine She does well with routines (like putting her carseat straps on) as long as I don't accidentally make the wrong thing a routine (screaming the moment we get in the car... been there done that)

[CarrieMF]

Do you think having it be as part of the routine is the best way to go?

only if she's consistent enough to go at certain times of the day. Not alot of people are that regular, yk.

Having a social story may help.

[CarrieD]

I didn't have time to read all of the responses but I am in the process of potty learning with my 5.5 year old. I was so pessimistic at first because we were starting from a place where he did not even acknowledge that he peed..he could care less if it went down his leg or he was wet. I could only "catch" that first thing in the morning pee because it was inevitable but hardly ever throughout the day. We worked with the school and they helped set up a potty learning program for us. The first thing was to give him LOTS to drink and to get him to sit on the potty for 1-3 minutes at a time very, very frequently (like every 15-20 minutes). If hadn't gone for a while then 5-10 minutes. This gave him lots of opportunities for success. We made sitting on the potty fun by reading stories, singing, etc.
The first 3 weeks were very intense. I had to be "trained" before he was. My world revolved around the potty for this time and it was hard. I needed some help on tough days. It was very important to have a timer in the bathroom so that I did not forget to take him. I can't stress enough how important the timer is. You have to stop what you are doing and take him. When he went to the bathroom we cheered and gave him a smartie candy (that's what he likes). After about two weeks he started to get it! By three weeks he was going on the potty most of the time and we reduced the amount of liquids in a day to a normal amount. It has been about 2 months since we've started and I have learned to be so observant about how long it has been since he last went and little things that he does when he needs to go. We still use the timer a lot but I am much more aware of how frequently he goes after he has had a lot to drink or when he has had less to drink. He has about 1-3 accidents a day. Boy have we come a long way and I didn't think that we would so quickly and without it being a bad experience for him. Actually, all of this sitting on the potty has given us a lot of one on one time. He really needed potty learning to be structured.
The next thing that we have to work on is having him "tell" me that he has to go. He is VERY speech delayed. We have a potty PECs picture on the bathroom door that I have him give me before we go now. This part will take a long time for us.
I hope that our experience helps you a bit.
My son has a rare chromosome disorder dup2(q13,q23). He is delayed in all areas, especially speech and has low muscle tone and mild hearing loss. He functions at more of a two year old level...kind of. He is lots of fun and is a happy little guy : )

[bbsc]

The past 24 hours have gone pretty well on the potty front here! I decided to try "running out of diapers" again. Yesterday morning there was one left in the diaper drawer, and it was gone by noon. He willingly wore underwear, and held his urine for several hours, longer than I've noticed him staying dry throughout the day in general.

I decided to try letting him take charge, and I didn't mention peeing in the potty or remind him that he was in underwear at all. At about 4pm went to the bathroom alone and peed in the big toilet standing up (I peeked in to see him)! He had a number of successes, and I did not comment on them at all. He did have one accident in the evening, and wet the bed, of course. But he didn't have a melt down about the lack of diapers! He had a poop accident today, but he's peeing in the potty! Amazing!

Right now, he tracked down a ripped pull up, and wanted to wear it, so right now he has that on. But all the successes have been so encouraging for me! I think that he is getting the right signals from his body, which I wasn't sure about before.

Thanks again to everyone for sharing advice and stories! They have been so helpful for me!