2 of my bbg are completely trained-finally! I'm now ready to begin my son who has Sensory Integration Disorder, developmental delays, and mild CP (hypotonia). We started earlier this week using all the traditional methods (that worked on my first two) with ZERO luck. He is very eager to train, enjoys sitting on the potty (in fact we have a hard time getting him off the toilet), and is excited about no more diapers. I realize I'm going to have to train him differently from the others, but I don't know what to do to help him.

The problem is he just doesn't get it at all! He doesn't really feel the urge to go or understand how to make himself urinate (we will try poo poo later). He has sat on the toilet on his own for up to an hour with no luck (he wouldn't get up even when we told him to because he thought it was fun). His language skills are good and he seems to understand the verbal cues, but can't correlate the physical sensation. He tends to hide in our dining room when he needs to go, and we've taken him to the potty each time he hides. He hasn't been successful one single time. We've tried the "you can't come out until you go" method, the positive approach, the naked method, the wearing only thin underwear and leaving them on when he has an accident to show him what it feels like to be wet with no avail. ARGGH!

If anyone has trained a difficult child with sensory issues, developmental delays, or hypotonic CP, I would appreciate any advice or help you could give. I don't want to do anything that will set his progress in other areas back. I will also ask his OT and PT for advice when he resumes therapy after the holidays.

Thanks!

Triplefigs
Proud mom to 3.5 year old bbg

"Train up a child in the way he should go; and when he is old, he will not depart from it." Proverbs 22:6

Denise
Proud mom to BBG 2000

One of my boys was very delayed in his training because of severe sensory issues, damage to his vagus nerve (from gal bladder removal), neurological damage from being deprived of O2 for 5 min. after one of his surgeries, yet to be discovered celiac disease (affects motility) and many bowel surgeries. He still wore pull ups until @ 6 months ago (when he was almost 7 yrs old) during the day, because he just couldn't feel the sensation to pee until 'it was on it's way out' .

All of his doctors (that helped him with related issues)- his pediatrician, his developmental pediatrician, his neurologist, his urologist, his gastroenterologist and the motility expert (GI) doctor all agreed on what we needed to do. His OT and PT also agreed. The developmental pediatrician we see is Dr. Barton Schmidt- a well known and widely recognized toilet training specialist. He is at the Children's Hospital in Denver ph # 303-861-8888 (main hosp. #) We just had to wait until his body could distinguish between certain sensations before he was able to go without 'backup' during the day.
We were told that bodies can be trained and that by timed voiding, you can train your DS's body to go at certain intervals. That didn't work for our son, but it may be the key for your son. Our son would go in the bathroom at timed intervals and try to go, and then sometimes a few min later he would be wet - he didn't know what was going on until he was wet. He didn't know how to coodinate what his body needed to do. Does that make sense ?

It was pretty frustrating for all of us - most of all him . I was told by all the drs that boys often don't develop the ability to understand the signals their bodies are sending them- at least it is often amongst the ones seeking medical help KWIM ?
My other DS has SID also and still doesn't pay attention to what his body is telling him. He often has to be asked to go try 'just in case' when it is obvious to everyone around him that he really needs to go. You know the look, and the movements that only mean one thing . He was trained a few months after my DD though. The timed voiding method worked pretty well for him.

I would try to get an appointment with a developmental pediatrician if you don't see one already and try the timed voiding. We started out taking the kids to the bathroom every hour - it's a PITA though. We soon moved to 2 hrs then 3 is what we still try to do (for my 'experts').

Good luck with finding what works for them. We tried very hard (not always succesfully) to avoid putting pressure on him. His body just couldn't do what most kids' bodies can

Lorraine

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

Lorraine,

Thanks so much for the advice. What you describe sounds exactly like Rees. He does not get the "feel" or "urge" at the moment. The few times we've had success with him, it has simply been lucky that we hit him at the right time. Poor guy, he wants to train so much and sits there smiling and singing. Today he even told his penis to hurry up because he wanted to go outside and play-LOL! I do know he doesn't feel the things my other two do. Rees has very low sensitivity to things (such as pain), has had 4 major abdominal surgeries for severe reflux (very low abdominal tone/muscle strength), has the SID, and hypotonic CP.

My DH and I have been researching this issue on the internet, and the timed method is kind of what we'd been thinking of trying for Rees. However, we have 4 questions for you:

1) Did you only do voiding at first, or did you do both urination/defecation at the same time?
2) How long did you have your son sit each hour before letting him get off the potty?
3) Did you use pull-ups, diapers, or underwear with the timed method?
4) If you did use underwear, did you make him wear them for a few minutes to realize what "wet" feels like and correlate it to urinating?

Thank you so much for taking the time to respond to my questions. I really appreciate the advice and help.

Denise

Triplefigs
Proud mom to 3.5 year old bbg

"Train up a child in the way he should go; and when he is old, he will not depart from it." Proverbs 22:6

Denise
Proud mom to BBG 2000

Hi Denise

1) Did you only do voiding at first, or did you do both urination/defecation at the same time?
2) How long did you have your son sit each hour before letting him get off the potty?
3) Did you use pull-ups, diapers, or underwear with the timed method?
4) If you did use underwear, did you make him wear them for a few minutes to realize what "wet" feels like and correlate it to urinating?

1) He actualy had problems with his pooping that are very rare for kids w/ short gut. He had a lot of constipation and years of problems and many, many test. He had a probe placed during a colonoscopy that measured what his colon was doing. He interpreted the feeling -brought on by meds to contract the colon- as very painful, not an urge to go. It turned out he has celiac disease also, and that causes motility problems. That was really hard for him to endure (TONS of pain with all the adhesions from bowel resections). Anyways..sorry got off track . He learned to manage his stooling before his urinating, because of the constipation, he didn't have the same 'lack of sensation' problem.
2) He has ADHD, so sitting for long periods (any period of time actually ) doesn't happen. We usually asked him to try for for only a few minutes and had some sort of reward/incentive for him in the bathroom.
3)We used pull ups (actually the Target brand worked the best and was cheapest that we found).
4)We had quite a few trials with underwear and trying to get to feel the 'being wet' feeling. None of them worked for him, and he would just get more frustrated and embarassed. The urologist he sees-for hydronephrosis- said that he didn't feel any sensation, that would clue him in to needing to go, until the urine was actually coming out. He would then say I need to go. He was terrified of having accidents at school too.
He eventually developed that neuroogical connection, and could act on it, it just took much longer than for most kids.

<<Today he even told his penis to hurry up because he wanted to go outside and play-LOL!>>
That's too funny !!
Sounds like something Braden would say
<<Rees has very low sensitivity to things (such as pain)>>
So does Braden and I think it's a big factor
<<has had 4 major abdominal surgeries for severe reflux (very low abdominal tone/muscle strength)>>,
:'( did he need to have his fundoplications re-done ?
Braden had a fundoplication and many major abdominal surgeries-so he also has the same low tone/strength

Some days I was just happy that he could poop and pee at all , and some days I got so frustrated I wanted to scream !!
Most -maybe all w/ very few exceptions- people just didn't get the extent of his obstacles and how hard he was trying.
Our school principal basically dismissed the letters from his 3 GI doctors, his neurologist, his OT and his PT , his urologist and even the expert-Dr Schmidt. His main Gi doctor was so angry, he tried calling the principal several times, but she never called him back. They all said emphatically that he needed to have immediate and close accesss to a bathroom. They still put the first grade classrooms in a portable building that was legally too far from a restroom }> }> }> . They decided to give him an aide to help him get to the bathroom , and that just really embarassed him. Were they expecting the aide to swoop him up and run to the bathroom with him ??? Sorry I started on another tangent.
Hope I helped answer some of your questions.

Lorraine

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

One of my boys has mild autism (with SID) and mild CP. We had to take a different approach with him too. I believe he just couldn't recognize the signs or sensations. When he was almost four we did "the naked routine". I just wonder if it would be worth trying for a longer period of time? Did he actually "see" the accidents as they happened? The visual input really seemed to help our son.

Here's how we did it... We committed to a full week where we wouldn't really be leaving the house. We removed all clothing from the waist down and pushed lots of juice and salty snacks. We tried to keep him in a fairly small area of the house so that whenever he would start to have an accident I would be right there (I also picked rooms that weren't a big deal to clean up, avoiding the newly carpeted rooms!). When I would see him start to have an accident we would go directly to the toilet. I would then show him how to clean up the mess (which he hated since he's so tactile defensive). It really only took a couple of accidents for him to start to make the connection between what he was feeling and what was actually happening. Towards the end of the week he was doing very well. The problem came when I added pants, he seemed to lose the recognition. So first we added underwear for a couple of days, he seemed to have to relearn the recognition, then we added shorts and then eventually pants. It took almost 10 days to get him to recognize the signs when fully dressed. We had to take each transition slowly.

As for naps and nighttime, he was completely dry in about 2 to 3 weeks. We would keep his underwear on and put Pull-ups on OVER the underwear, this way he really felt wet, it didn't always bother him, but at least he knew something was different. Just using the Pull-ups was a waste! He didn't realize anything had happened.

When he started school full time he started having some accidents again, we figured out that it was because he expected his teacher to tell him it was OK to go to the restroom (not realizing that she wouldn't know this without him telling her). The teacher eventually started adding more bathroom breaks for the whole classroom, making sure that he was going at these times. That really seemed to help. We still have to remind him to go if we are going to be traveling any kind of distance. If he doesn't feel the immediate need to go, then he will often wait until it's almost too late. He definitely continues to improve though.

By the way, I moderate an online special needs group for MOST and potty training is a common issue for lots of us. If you are a member of MOST and are interested in joining, just let me know. Good luck, I know it can be extremely frustrating! Also, I heard that there is a technique used for mentally handicapped children where you use a doll that wets and the child is the one "teaching" the doll. I'm not sure this would have worked with my son, but when you get desperate I think you'll try about anything Hang in there!

Take care,
Kristin
Mom to Hayden, Evan, Conner-13 and Kelsey-11
www.cure4conner.org

My Karissa has mild CP. She was not trained until she was almost 4.5. It was very frustrating but until that time she just wasn't ready. I spoke to her pediatrican and neurologist about the issue -- they both said to just wait. So I would try every couple of weeks and if it got frustrating for both of us - back to diapers/pull-ups. I was very worried since she was starting preschool and had to be potty-trained. But her doctors were right, she finally did it and it was very easy. She was trained in less than a week.

Noah has moderate CP and is finally almost potty-trained at 5.5. He attended Conductive Education for two years (a program for children with neurological problems). They start putting kids on the potty at the age of two. They do it at scheduled times - maybe every two hours or so. They only sit for 10 - 15 minutes. For the longest time Noah would do nothing but then all of a sudden it clicked. We kept him on a schedule for awhile but then he started asking to go.

So my advice is to just be patient (I know it's tough). I have friends with "normal" boys who weren't trained until they were 4 or older.

HTH -

Lori --
Mom to Zac (9/91) and triplets Noah, Karissa & Jazmine (5/98 at 27 weeks)

Lori --
Mom to Zac (9/91) and triplets Noah, Karissa & Jazmine (5/98 at 27 weeks)