Friday, August 7, 2015

Intensive Potty Training

Potty training is a BIG topic in the Down syndrome community. Potty training any kid can be a challenge, but kids with Down syndrome have extra challenges to overcome, such as delayed comprehension, poor communication skills, and lack of motivation to be potty trained (i.e. while some kids may be motivated by a peer who wears "big kid" underwear, a child with Down syndrome may not notice this or care, which was definitely true for Nolan). Because potty training has historically been a struggle for parents in the Down syndrome community, our local Down syndrome association held potty training seminars targeted to the special needs/Down syndrome population multiple times in the past few years. I attended the seminar twice in preparation for potty training Nolan. The program I learned in the seminar is very intensive and was developed and taught by a child behavior psychologist. After attending the seminar twice and talking with several parents who followed the program for their kids, I thought I was prepared for the intensity and difficulty of the program, but it was even harder (and took longer) than anticipated.

I introduced potty training to Nolan over a year ago. I bought him the Signing Time potty DVD, we read books on the subject, practiced using the potty, talked about it, taught him potty signs, praised him when he would pee on the potty, etc. Even though Nolan demonstrated awareness and control of his bodily functions, I was still at a loss as to how to potty train him. With Nolan getting older, it's been on my radar for a while, but I was recently feeling more and more pressure to get it done for several reasons. One, he's attending a regular (non-special education) preschool in a few weeks, where they require all children be toilet trained to attend (although they were willing to make an exception for Nolan). Two, he's a few days from this fourth birthday (and most of his peers have been potty trained for at least a year). Three, the intensive potty training program takes several days so I didn't want to do it during the school year. Four, we will have a second child taking up a lot of our time and attention in just a few months, so it made sense to get the hard work done before that happens. And, five, he's been wearing the biggest size diapers available at the store, and they were getting tight. All those factors influenced our decision to start the intensive potty training program for Nolan last week.
Underwear!


For those who want to know what we did/how we did it, here is an overview of the program:

Program Overview

As I explained, since many kids with Down syndrome (or special needs in general) are not motivated in the same way as other kids to learn potty training, the idea of this program is to make the experience of potty accidents something the child wants to avoid. In other words, negative reinforcement is the key. [Edit: negative reinforcement meaning the child performs a behavior (using the potty) to avoid a negative stimulus (having an accident).] The basic idea is to praise the child and let them have lots of fun as long as they stay dry and/or remember to use the potty to eliminate. The moment they are wet because they didn't use the potty, the fun stops and the consequences are unpleasant.

You start the program by doing three things: 1) put the child in underwear (the program strongly recommends not going back to diapers/pull-ups after introducing underwear to avoid confusing the child). Tip: It's best to use underwear that doesn't have a pattern or dark colors. It's easier to see that the underwear is wet if the underwear is say, a light gray.  2) confine child to a small area very near the bathroom, and 3) encourage him to drink lots of fluids so as to provide many opportunities to teach. Tell him to stay "dry" and frequently check to see if he is still dry. If he is dry, allow the child to continue to play/watch TV/whatever fun activity he's doing, and praise him: "Yay, you're dry!" At the beginning, when you know the child likely has a full bladder and probably needs to pee, you may put him on the toilet to encourage him to go in the right place. Important: NEVER have the child sit on the potty when he doesn't need to go (this sends mixed messages: i.e. sometimes you sit on the potty when you have to pee, sometimes you sit on it when you don't have to pee...?). When he pees on the potty, he gets a big reward: lots of praise, toys, a movie to watch, candy treats, whatever. Once the child has gone on the potty, you must begin to fade the prompts, from direct, to indirect, and eventually no prompts. The goal of this is to teach the child to be self-initiating. A child may self-initiate in a variety of ways: verbalizing the need, signing "potty," or simply walking to the bathroom on his own. Unless this self-initiation aspect is taught (particularly important for kids with Down syndrome), the child will rely on someone to remind/tell him when to go, so he will not be independent, and will be more prone to potty accidents. An important key in teaching self-initiation is to NEVER ask the child if they "need to go potty" (are you always going to be willing to accept their answer anyway?) You can instead ask, "Are you dry?" That is an example of an indirect prompt. Other indirect prompts include doing "drive-by's" by walking past the bathroom/potty, modeling ("Mama is going to use the potty"), and even physically nudging the child in the direction of the potty when you think he needs to go.
Pushing those fluids!
Life is good when you stay dry!

When the child has an accident, the first thing to do is shut down the fun. Loudly say, "No! You're wet!" and turn off the movie, remove the toy, etc. Immediately stop whatever fun your child is having and begin the "accident routine." Now, the accident routine may sound unusual, harsh, or excessive to some but it's the most important piece in teaching the child where NOT to pee! It has to be an experience the child doesn't want repeated or the accidents won't stop. Once you shut down the fun, put the child to work. You must run him quickly from the site of the accident to the potty saying things like, "When you have to pee, you need to run to the potty! You're wet, oh no!, you need to stay dry! Pee goes in the potty only," etc. Run him quickly back and forth 6-10 times. Then, he must begin the clean-up. The child is responsible for cleaning up the accident, although you must obviously supervise and assure the mess is properly cleaned yourself. Use a bucket and water and have him scrub the area where the accident was (even if there isn't anything on the floor -the routine is important). Make him clean for a few minutes and remind him how much "work" an accident is. YOU decide when the clean-up is over. He must also remove his wet underwear and have him swish that in the water too. When clean-up is over, put on dry underwear, tell him to keep it "dry" and stay near the potty. The fun cannot return for several minutes (up to 30) after the accident. Even if the child decides to use the potty after dry underwear has been applied, delay returning to fun activities for a few minutes because of the accident. It's a lot easier to remember to use the potty when you've JUST been corrected from an accident. Important: never let the child "finish" an accident on the potty. He must learn that you go potty from a dry place, not a wet one.
Cleaning up an accident.

Those are the basic principles. You practice these routines from the time the child wakes up until he goes to bed. At least 4 days must be set aside where no other children are around and each entire day is focused on following the rules of the program. This is why it's called "intensive" potty training. :) The last piece of the program is learning to use a potty outside the house (at the store, restaurant, etc.). Once the child has mostly mastered staying dry and self-initiating to use the potty at home, you can attempt to generalize to pubic places. Plan the first outing to be rather brief (example: a snack at Panera) so you can leave at any time if you need to, and choosing a place where you can pick a seat near the bathroom is ideal. When you get there, show him where the bathroom is and tell him that's where he'll need to go if he has to go potty. If he has an accident while you're in public, you'll need to perform a modified clean-up routine. For instance, have him clean the chair he was sitting on with some napkins or wet wipes. And, you'll have to leave as soon as the accident is cleaned up (shut down the fun).


Now that I've described the overall program, here's how it went for us:

Our Experience

My overall view of doing this program is that it's awful. It's hard being stuck home for days on end. It's miserable feeling like you're being mean to your kid. It's frustrating when it feels like it's not going to work. It's boring and zero fun doing nothing but sitting by the bathroom for several days in a row. It's not an easy program to commit to, but once you start that's exactly what you have to do: commit. And, even though by day 4 you feel like it's never going to work, it will. It's just really really hard. Really hard. Even after it starts to work, it's still hard. I've been a parent of a child with Down syndrome for 4 years now and I've learned that a lot of things take Nolan longer to achieve and they're more difficult to achieve than for other kids. Potty training is no different, but this is the hardest thing we've ever done with him. Thankfully, it's working.
Potty training is so boring sometimes!

Day 1 of the program was hard because even though we knew the program, we really didn't know how it was all going to look for us. Adam was home in the morning to help before he left for his afternoon shift at work. The first time Nolan had an accident, and we did the accident routine, he cried. I felt so bad. He didn't know it was coming. Fortunately (and unfortunately) he got used to the accident routine pretty quickly and we had to make it more work for him because he liked cleaning up. :)

By Day 2, we were in the routine of the program and that almost made the whole thing worse. It was just accident after accident it seemed with no progress being made. An entire day of accidents. That's hard. Fortunately Adam was home for days 2 and 3. By Day 3, I was getting really discouraged, even though he was having success (staying dry and/or getting to the potty after an indirect prompt) about 50% of the time. I was so sick of accidents and sick of being stuck home (although Adam and I did trade off the occasional break), sick of ALL of it. I was warned about this stage by friends who'd done the program. I knew it was going to keep getting worse before it got better, but even though I had mentally prepared myself, it was still very difficult to get through. It helped to complain to talk to those friends all day long via text. ;)

I kept waiting for it to "click" with Nolan, like my friends assured me it would. I was starting to really doubt them when, late on day 3, we were all sitting outside on our back deck (we'd take short breaks outside together, no longer than 15 minutes at a time away from the bathroom) and suddenly Nolan stood up, tried to open the door to the house and I'm pretty sure I saw him sign a really quick "potty." We ran him into the house and he peed on the potty! He did it again that night: got up from playing and went into the bathroom. By day 4, I was sure it had "clicked." He was still having the occasional accident, and we were doing "dry checks" ("Are you dry? Yay!") but the majority of the time, he was self-initiating.
At least potty training didn't put a cramp in his golf game. 

Yay for using the potty!
[Not pictured: all the times he's tried to stick his foot, hand, or face in the toilet, sometimes successfully.]

On day 5, we did our first big outing. As a reward, we took him to Five Guys for dinner to get french fries, which he loves. I was a nervous wreck, afraid he'd have an accident. I showed him where the potty was when we got there, but I couldn't tell if he understood/was paying attention/would remember. He got up several times during our rushed meal (I didn't want to stay too long) but not to go potty. He wanted to try out all the other chairs in the restaurant, play with the ice machine, etc. He never went in to the bathroom, but he never had an accident either! Although I was disappointed he didn't self-initiate in public, I was happy he stayed dry! He peed on the potty as soon as we got home.
Waiting for french fries!


Mmmmmmm.

I had cancelled one of his therapy appointments on day 5, not sure he was ready for that, but I figured we'd have to do it sooner or later, so we went to his hour-long speech therapy appointment on day 6. When we got there, I showed him where the bathroom was, and this time, took him in to show him the actual toilet in there (thinking maybe he'd understand better if he saw for himself), and I reminded him several times during his appointment to "stay dry" and "sign potty if you need to pee." He never initiated the need to go, but he stayed dry. After the appointment, I really wanted him to try using a public bathroom -just to know he could do it. So I kind of broke the "no prompt" rule. I decided to model using the public bathroom for him, so I told him "Mama needs to go potty" and took him with me in the stall. He watched me pee and then flushed the toilet for me. He seemed very intrigued by this different toilet but just stood there. Since he doesn't verbalize when he needs to pee, and he rarely signs either (he usually just walks into the bathroom), I didn't know if he wanted to pee or not, but I was sure he needed to, so I cheated a little and "prompted" him by saying "Is it your turn?" And he enthusiastically said "Uh huh!" And he peed on the potty! I know I shouldn't have given him any prompt, but for his first public bathroom pee, I thought he deserved a freebie. :) Now that he's done it once, we'll work on being self-initiating in public.
Wearing underwear at speech therapy for the first time!

Thumbs up for using a public potty!

We have now completed day 8 and he is doing great! He's averaged one small accident per day for the past few days. And the accidents he has now are small -confined to a small spot on his underwear only (he stops it before it turns into a big accident on the floor). I still have to plan things around when I know he doesn't have to pee -i.e. he just peed, quick let's go for a walk now! So, that's still challenging. We are still spending most of our days in the house because he wants to use the potty a lot. He still isn't great at spacing out his potty trips. He goes through spurts where he wants to go every 5-10 minutes and will just squirt out a few drops each time. I can't tell if that's because he likes this new potty routine (he loves to flush the toilet and play in the sink wash his hands) or if it's because he's not used to letting his bladder get full before he empties it. We did go to a friend's house today for a little while and he used the potty there -three times! And he insisted on using their pretty pink princess potty seat instead of his that I brought with us. :)
Yay! Getting out of the house for a quick walk.

Thumbs up for doing so well!

All of this success is in regards to pee only. Pooping is a completely different story.

The Poop Story

Nolan is a regular pooper. He always poops once a day and has never been constipated in his life (he struggles more with the opposite problem). So, by the end of day 2 of the program, when he had yet to poop, I realized we needed an intervention. Nolan had exhibited control over his pee and poop when he wore diapers, but I had no idea how much control he really had. He was absolutely REFUSING to poop without a diaper. I didn't see that coming. So, after he was in bed on day 2, I went to the store and bought a box of pediatric mini-enemas. First thing on the morning of day 3 (after he peed on the potty), he got one. It was TRAUMATIC. After the enema was in, he realized he was going to lose his precious control over his bowels and he started SCREAMING. I had to hold him down on the potty (we use his little kid potty for poop since he can assume a more squatted position) and it took all my strength to keep him sitting down. When the poop started coming out, he was hysterical. Crying, screaming, and shaking. It was awful. Once it all came out (and there was A LOT after missing two days of poops), he was fine. We showed him his poop and cheered that he pooped on the potty.

Unfortunately, we've had to do this routine first thing in the morning, every morning since then. At this point, he's still very upset every time we make him poop via enema, although it's not as traumatic as the first time -the iPad helps him calm down. :) Today was the best day so far. It will take some time for him to get used to pooping on the potty, so until then, we will continue our morning enema routine. It's important he not constipate himself during the potty training process because if he's full of stool, it can start affecting his success with staying dry, as he'll be more likely to have accidents.
Thank goodness for the iPad! 

So that's how the program has gone for us. Very challenging, but I'd say it has been successful, even though it's not over yet. He still needs to learn how to self-initiate in public places. He needs to learn how to communicate in general when he needs to go! He's still just walking into the bathroom to let us know, so we have to be paying constant attention to him. And he needs to get better about waiting longer in-between potty trips. At this point, I'm confident all these will work out over time. I am concerned how this training will transfer to a class setting, like at school and church. Will he be able to tell them when he needs to go? Will they be paying attention? Will they ruin his self-initiation by constantly asking him if needs to go? We will definitely be having discussions with his school and children's church teachers about his training, but it will likely be a challenge for him at first.


Other miscellaneous details I haven't yet mentioned about our experience training Nolan:

Misc.

Set-up
For the first several days of the training, we stayed downstairs, in the living room and kitchen only, which is near our half-bath. We rolled up the living room rug and gated off our family room, which has carpet. We kept the bathroom door open and the light on at all times to make it easy for him to get in there. (We put or living room rug back a couple days ago and he's now allowed back in the family room.)
I just had him play on a folded up blanket since we took the rug out. 

Rewards
For rewards, we used a variety of things. When he stayed dry, we would let him watch PBS shows on TV or Netflix, or he would be allowed to play with toys and puzzles. When he had an accident, we would shut off the TV, take away the toys, and after the clean up, keep him in the kitchen only (reducing his freedom and keeping him even closer to the bathroom). When he had a successful dry check, we would either just give him verbal praise, or let him pick out a sticker to put on a board. When he had a big success on the potty, we would give lots of verbal praise, offer him mini-marshmallows, and occasionally let him pick out a new toy. I had purchased a variety of little toys at the dollar store to use as rewards. And, of course one reward was always returning to whatever fun he was having before he went potty.
Picking out a sticker. You can see I just made a crude sticker board out of scrap cardboard. The fun was in picking out the sticker and putting it on the board. Nothing fancy needed.

Yay for the dollar store!

"Ooooh!"

Picking out a show to watch on Netflix.

Night/Nap
At nighttime, just before he gets into bed, we put a nighttime Pull-Up on Nolan. He actually stays dry overnight about half the time, but to cut down on laundry, we just use the Pull-Ups. I've talked to other parents who use Pull-Ups at night with this program and it hasn't affected their child's success during the daytime. We just make sure to take it off first thing in the morning and put regular underwear back on.

For naps, I leave him in his underwear. He fortunately always stays dry during naps, so I don't need to worry about it. We just make sure he's recently used the potty before we put him down for his nap.


We encountered some unexpected problems during the training process (aside from the previously described poop issue):

Problems

Communication
Nolan struggles with communicating in general. His speech is very limited, and even though he knows hundreds of signs, he only uses a handful to communicate his ideas and requests independently (most of his signs are used for labeling things). As I mentioned, right now, he's simply walking into the bathroom when he needs to use the potty. He can't say "potty" but he does know the sign for it, even though it's sloppy. But, he's not communicating to us when he needs to go. This is especially a problem in public when he may not be able to just walk into the bathroom when he needs to go. And, with babysitters, teachers, and at church. He will need a universal way to communicate this very important need. I'm not at all convinced he'll be able to communicate his need for the potty if Adam or I are not with him so I did create some laminated potty cards that might help in these general situations, but have yet to figure out the best way to use them with him.

OCD tendencies
Nolan likes routine. He responds well to routines, as he likes knowing what to expect and what's expected of him. And routines are good for him, as they are especially useful in helping him learn new skills. Sometimes, however, his affinity for routines gets a little... intense. He's been known to get angry or have meltdowns if things aren't done the certain way that he likes or expects. And he's also known to get obsessive about certain things, like shutting doors, and fixates on eating certain foods, like strawberries and popsicles.

I don't think his little obsessions and pet compulsions are particularly abnormal, and they are actually common in people with Down syndrome, but it is something we've observed with him, including with his new potty routine. Now that he has a routine of using the potty, he wants to do it the exact same way EVERY time. From how he climbs on the stool to when he flushes the toilet and how he washes his hands. It all has to be done a certain way or he will freak out.

Since Adam has been back to work for several days, I've been home with Nolan, continuing to work on his potty skills. We've noticed the last few days that when Adam is home, and Nolan heads into the bathroom, if Adam follows to help him, Nolan yells "NO!" and changes his mind about using the potty -unless I come to help him. For some reason now, Adam is not allowed to help him in the bathroom. We can't be certain of why this is because Nolan can't tell us, but my theory is that since Adam hasn't been home the last several days while Nolan developed and perfected his routine, he doesn't trust Adam to know how things should be done. This is when his OCD tendencies become a problem. I cannot be available all day every day to help him in the bathroom. And, sure enough, when I went grocery shopping yesterday evening and left the boys at home, Nolan had an accident. Because he didn't want Adam helping him. At some point, he will need to learn to let others help him, even at the risk of altering his precious routine. Hopefully soon, he will decide that avoiding an accident is more important than his perfect system.


Even though we're several days past the worst and most intense part of the program, I still have mixed feelings about it. Maybe because it's all still so fresh -parts of it were just so hard. And we're still not done working on it... still have kinks to work out. Really, I just miss the diaper stage. Diapers are way easier and I'm sad that easy stage is over. As challenging and as intense this program is, and as much as I disliked it, I do have to say it is working. He understands where to pee and not to pee and can demonstrate his independence in self-initiating. Those are big accomplishments in a matter of days, really. And, I don't know how else we would have accomplished this. As I said, we've been "working on" potty training for over a year. To have continued with the slow, more traditional route probably would've taken another year or more to get to where we are now.

One of the most valuable aspects of this program is the self-initiation piece. That is a huge skill for kids to have. To be independent in that area of toileting is wonderful for the self-esteem and so important as they get older. Nolan loves being told he's a "big boy." And I don't know how else we would've taught Nolan to self-initiate without this program, at least as quickly as we did.
So proud of Nolan for being such a brave, big boy!

Well, if you made it this far, you must be Nolan's grandparent ;) or really interested in potty training, so if you have any questions, please feel free to ask. This was a very long post with a lot of information, so it's very possible I didn't explain something well or left something out. And, I will add that I highly recommend the Potty Time DVD (part of the Signing Time collection) if you are planning to potty train soon.


And, lastly, I want to thank everyone who supported us in this very challenging process. My potty training veteran friends who gave me tons of advice and encouragement, and several members of our church family for praying for us and offering to bring us meals during the first few days! So thankful for a community of family and friends who make this (sometimes very difficult) journey of special needs parenting much less lonely and difficult.

Thanks for reading! And, good luck to all you potty trainers!



This program was written and taught by Alice Belgrade, M.S.ED., L.C.P.C., B.C.B.A Certified Behavior Therapist. Chicago, Illinois.

[this post was published on 8/7/2015]


****Update! 2 years later. After completing the program that August, Nolan went to preschool in the fall and had some setbacks. School was a big adjustment to his potty routine. Throughout that first year of wearing underwear, he would have long periods of success and then start having accidents again. It was frustrating and baffling. I'm sure there was probably an anxiety component, like if something in his life changed (i.e. the birth of his sister), it would throw him off. We had to use enemas pretty consistently for a while. First every day then we moved to every other day to give him opportunities to poop on his own volition. Eventually, he started to. We always let him play on the iPad when he was pooping, to reduce his anxiety, and to this day the only time he plays on the iPad is when he's pooping or has just pooped. :) Even after he started pooping on his own, we would occasionally have to give him an enema if we noticed him not go for a couple days. Now, 2 years later, we rarely have to give him enemas and he has no fear of pooping on the potty.

As far as the self-initiating piece... For the sake of my sanity, I had to let some of that go. I had started feeling like Nolan's bladder was running my life! I couldn't leave the house with him unless he'd *just* peed or I feared he'd have an accident in the car. So I got sick of waiting around for him to pee so I could get on with my life. After a few months, I started just telling him to go when I knew he needed to if we had to do something or go somewhere. "We're going in the car, so let's go potty..." kind of thing. Nothing out of the ordinary for most families probably. I was worried if I took some of his self-initiation away, he'd lose all of it. He didn't. Now, 2 years later, I tell him to go potty if I know he needs to go and I know he won't be comfortable, able to, or want to. For example, during church we just take him about half-way through the service, if we have friends over we make him go before they arrive, or if we leave the house and won't be near a bathroom, he goes before we leave. The rest of the time, he self-initiates by either using the bathroom 95% independently! (he just needs help pulling his pants back up), or by telling us "potty." And he'll usually ask for the iPad if he wants to poop. Although he can poop without it. :)

So now that we're 2 years out from the intensive training, I'd say it was worth doing. But I never want to do it again! I think Nolan may have had more success in the beginning if he'd been a little older. 4 years old may have been slightly on the young side for him to do this program. But what's done is done and I'm happy with where Nolan is now. And he loves being told how big of a boy he is when he uses the potty. :)

Kids with Down syndrome are very capable of learning this complex skill, but like many other things, they may need to learn a little later in life, or learn a different way. Nothing wrong with that, but it can be a frustrating aspect of special needs parenting.

Potty training is not for the faint of heart! Good luck all you potty training warriors!

[Update written 8/7/2015]

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