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Should we go back to pull-ups?


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#1 mom of 2 boys

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Posted 25 May 2017 - 10:34 AM

I'm at my wits end here. My son (ASD) is going to be 6 in July. I managed to get him 90% potty trained and out of diapers a year ago, and he proceeded to spend the next year slowly regressing. It's been a roller coaster. He regressed to the point of losing all training a couple of months ago, but I got him back up to about 75% trained. Now, he's regressing again. I can't take it anymore. He pooped his swim suit on the way out the door today, and I think this may be my last emotional straw. I'm ready to put him back in a pull up and just accept that I'm trying to force something that he is just clearly not able to consistently do right now. Would that be a mistake?

We homeschool, but I turned to the local elementary school to see how they would be willing to support him. The result was that he "no longer qualifies for special education." I have no interest in fighting it. I don't want people working with him that aren't even willing to see the need. The lack of support was a discouragement though. It is also maddening to experience this level of disability in our daily life and then have professionals act like it doesn't exist. Like I just imagine it all. It's crazy making.

There is good news though, I found out that an ABA agency just opened up near us!!! There previously were none (I was considering learning it myself.) Our insurance covers it, which is the other miracle - we do have to pay copays for each session, but at least it's finally within reach. Hopefully I will be able to get them in to start soon.

Thanks for listening, I'm mostly just venting about my discouraging morning. I have literally no one around me who has been through anything like this before.

#2 coastalfam

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Posted 25 May 2017 - 10:56 AM

Well, my son with Down syndrome is 11, and just this year stopped needing pull-ups at night. I still have to take him/tell him to use the bathroom at intervals during the day, because he cannot tell when he has to go. Luckily he has a bladder of steal, so doesn't wet himself unless I forget. And I am SO hyper aware of his poop signals, that I can just tell when it's time to run to the bathroom. Potty training him, and actually my "typical" 6 year old son as well, has been a journey, and I like to tell people my favorite technique has been putting on the pull-ups and taking a break for our mutual sanity. So, my vote is pop those pull-ups on for the summer, and regroup. It's amazing what a little time and physical maturity will do. 

 

And the public school thing. Man, I am so over special education. There are some GOOD people in special education, but dealing with a district is so beyond frustrating. I decided the stress that comes with homeschooling my son is a much healthier kind of stress than the stress that comes with fighting the district. And it is ALWAYS a fight. I'm glad you will be able to get ABA involved. Having behavior therapy and joining a homeschool social group has been an amazing fit for my son with Down syndrome. Also, I never thought to get him regular old counseling with a psychologist, but after his public school experience, he was clearly traumatized, so I found a psychologist who is experienced working with children with disabilities, and who uses therapy animals in her practice, and WOW! What a difference. I actually count it as one of my son's extracurriculars because he is learning to ride a horse, but so much more is happening that has been amazing for him skill building wise, and emotional regulation wise. And it is helpful to me in learning different ways to support my son. I definitely would recommend seeing what is available to you in this area as well. 



#3 Hilltopmom

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Posted 25 May 2017 - 11:36 AM

I would, yes.
And see if your health insurance will cover them as a medical need (you need a letter & script from your ped & theyll be delivered by a durable medical equipment company & be better quality & bigger than the ones you buy in the store).

#4 OhElizabeth

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Posted 25 May 2017 - 11:32 PM

Toilet Training for Individuals with Autism or Other Developmental Issues: Second Edition  Our library had this book, so you might look for it. Interoception: The Eighth Sensory System  This is another book to look for. 

 

See what the ABA people say about that regression. My ds would have increased wetting like that if he were stressed, getting sick, etc. 

 

I don't think it's a problem for him to be in pull-ups at 5. I think it would be nice in the next bit to see if you can use timers and management strategies to move him over if it can work. 

 

Ok, I'm trying to remember here. My ds was very late, and he still wets at night and some during the day. For him it was complex, which is why I'm linking multiple books. It wasn't just one thing, kwim? We did some listening therapy and reflex work that helped. Retained spinal galant can affect wetting. I'm forgetting now, but iirc when we started listening therapy we got a BIG improvement in daytime wetting.

 

For us it's layers of improvements, not one solution. I would put him back in pull-ups now, because he's 5, and I would work on management strategies. I would also make sure you've had an OT eval and screened for retained reflexes. 

 

You didn't ask, but these are awesome. https://www.amazon.c...ge?ie=UTF8&th=1 I keep a slightly bigger  Amazon.com: Premium Quality Bed Pad, Quilted, Waterproof, Reusable and Washable , 34" X 52": Health & Personal Care under the sheets. So I have plastic on the mattress, then a waterproof mattress protector, then the larger pad, then a sheet, then his bed pad. That way I can freshen his bed from the top as needed but know all the layers are protecting, keeping the mattress safe.

 

It wasn't for us, but for some people the wetting could be connected to constipation, food reactions, etc. Just something to look for.

 

 


Edited by OhElizabeth, 25 May 2017 - 11:33 PM.


#5 Kinsa

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Posted 26 May 2017 - 10:24 AM

I hope this doesn't discourage you, but my son (not ASD but ID) will be 14 in a few weeks and I still have to help him with toileting, and he still has the occasional accident. It is frustrating, I know.

#6 OhElizabeth

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Posted 26 May 2017 - 11:24 AM

Kinsa, have you seen that Interoception book? I really think, at least for my ds, it's the explanation on the wetting. They give 14 activities to work on that part of the brain. Some are better than others, and frankly I think they could be more fully developed. This is an area where a lot is already known in the trauma field, etc. So the exercises in Levine's book Trauma and Healing are very similar to some of the exercises in Interoception by Mahler. Levine just takes it farther, giving them things they can do for themselves. I think it's really important, because I think a certain amount of maintenance is necessary. We're using a counselor who's doing these techniques with kids with autism and ID. 

 

So, for instance the body scan where Mahler uses no touch (because this is written to school OTs), we are doing in our house with eyes closed and me touching the body part. You can also do it with a shower head set to pulse. Your ds might be able to do it for himself each day when he showers. Literally turn the shower head to the jet setting, let it thump that body part a while, then he names the body part and says how it feels. Repeat for parts up and down the body, with his eyes closed if he has the balance. It's hitting that interoception part of the brain.

 

I don't know, just connecting dots. Mahler talks about that gap, how even though they know that part of the brain is not firing enough to let them sense and regulate their wetting, it's really hard to connect verbally. So that's where I'm going ok we know there are more ways, gotta connect the dots to these other fields where people are doing this stuff. He might be able to do the other exercises in the book. She gives charts and explains everything. The book was a little pricy, but it's worth the money.

 

Oops, off to my life thing, gotta scat!



#7 mom of 2 boys

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Posted 26 May 2017 - 02:31 PM

Well, my son with Down syndrome is 11, and just this year stopped needing pull-ups at night. I still have to take him/tell him to use the bathroom at intervals during the day, because he cannot tell when he has to go. Luckily he has a bladder of steal, so doesn't wet himself unless I forget. And I am SO hyper aware of his poop signals, that I can just tell when it's time to run to the bathroom. Potty training him, and actually my "typical" 6 year old son as well, has been a journey, and I like to tell people my favorite technique has been putting on the pull-ups and taking a break for our mutual sanity. So, my vote is pop those pull-ups on for the summer, and regroup. It's amazing what a little time and physical maturity will do.

And the public school thing. Man, I am so over special education. There are some GOOD people in special education, but dealing with a district is so beyond frustrating. I decided the stress that comes with homeschooling my son is a much healthier kind of stress than the stress that comes with fighting the district. And it is ALWAYS a fight. I'm glad you will be able to get ABA involved. Having behavior therapy and joining a homeschool social group has been an amazing fit for my son with Down syndrome. Also, I never thought to get him regular old counseling with a psychologist, but after his public school experience, he was clearly traumatized, so I found a psychologist who is experienced working with children with disabilities, and who uses therapy animals in her practice, and WOW! What a difference. I actually count it as one of my son's extracurriculars because he is learning to ride a horse, but so much more is happening that has been amazing for him skill building wise, and emotional regulation wise. And it is helpful to me in learning different ways to support my son. I definitely would recommend seeing what is available to you in this area as well.


Thank you! I have been considering taking him to a regular therapist. I actually brought him in to a social worker who sounded promising, but within minutes she was calling him a "star child" and "spiritual", which I needed like a hole in the head.

I do have him doing therapeutic horseback riding right now though! He LOVES it!! He is afraid of animals, so I really did not anticipate it going this well!

#8 mom of 2 boys

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Posted 26 May 2017 - 02:33 PM

I would, yes.
And see if your health insurance will cover them as a medical need (you need a letter & script from your ped & theyll be delivered by a durable medical equipment company & be better quality & bigger than the ones you buy in the store).


Thanks, I have tried to get this covered in the past, but they wouldn't. I will try again now that he is older.
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#9 mom of 2 boys

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Posted 26 May 2017 - 02:35 PM

Toilet Training for Individuals with Autism or Other Developmental Issues: Second Edition Our library had this book, so you might look for it. Interoception: The Eighth Sensory System This is another book to look for.

See what the ABA people say about that regression. My ds would have increased wetting like that if he were stressed, getting sick, etc.

I don't think it's a problem for him to be in pull-ups at 5. I think it would be nice in the next bit to see if you can use timers and management strategies to move him over if it can work.

Ok, I'm trying to remember here. My ds was very late, and he still wets at night and some during the day. For him it was complex, which is why I'm linking multiple books. It wasn't just one thing, kwim? We did some listening therapy and reflex work that helped. Retained spinal galant can affect wetting. I'm forgetting now, but iirc when we started listening therapy we got a BIG improvement in daytime wetting.

For us it's layers of improvements, not one solution. I would put him back in pull-ups now, because he's 5, and I would work on management strategies. I would also make sure you've had an OT eval and screened for retained reflexes.

You didn't ask, but these are awesome. https://www.amazon.c...ge?ie=UTF8&th=1 I keep a slightly bigger Amazon.com: Premium Quality Bed Pad, Quilted, Waterproof, Reusable and Washable , 34" X 52": Health & Personal Care under the sheets. So I have plastic on the mattress, then a waterproof mattress protector, then the larger pad, then a sheet, then his bed pad. That way I can freshen his bed from the top as needed but know all the layers are protecting, keeping the mattress safe.

It wasn't for us, but for some people the wetting could be connected to constipation, food reactions, etc. Just something to look for.


Thank you, I'm thinking that it is probably going to end up being more than one issue in our case as well. I'm going to take a break from training for awhile, and see what the ABA people have to say about it in the meantime.

#10 mom of 2 boys

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Posted 26 May 2017 - 02:39 PM

Thanks everyone, I did go ahead and put him back in pull ups. I feel depressed and defeated, but also relieved. No more sitting on the couch to relax and instead discovering that it's soaked with pee!

#11 Moved On

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Posted 26 May 2017 - 04:29 PM

nm


Edited by Moved On, 18 August 2017 - 07:31 PM.


#12 Ottakee

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Posted 03 June 2017 - 10:10 AM

If he was doing very well and regressed, I would strongly urge you to look into encopresis as a possible issue.  Kids can be pooping every day but still be constipated.  It is one of the FIRST things that peds urologists look at when a child come in with toileting issues.  Constipation is very common in kids with sensory issues and on the spectrum.

 

While we dealt with that we did go back to pull ups and got them through our insurance as a medical need.

 

Even with pull ups, at the school I work at with special needs kids, we have "sitting time" twice a day for every child.  It is amazing how much success they can have with a regular schedule.  Some kids it is every 2 hours for 10 minutes.  Praise if they go, no negatives if they don't but it does help them, esp. the sitting after lunch.


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