Sherri Blaik: Helpful tips for success at potty training our rare children

Help!!!  I've been struggling with potty training and fearing what happens if I don't have success.  It's a scary world out there for anyone with special needs and having access to a bathroom that will allow for the dignity of our family members is not easy to find.  I hope this podcast will help some of our community.

Sherri presented how she successfully potty trained her SKDEAS daughter at the 2022 Family Conference and was nice enough to walk us through it again for the podcast.  It's definitely intense and requires a lot from the caregivers, but it was successful for her daughter and I hope it can be successful for others.  Good luck and let me know how it goes!!

Reference:
Toilet Training in Less Than a Day
by Nathan Azrin and Richard Foxx

Please visit SKDEAS.org for more information about Skraban-Deardorff and how you can support our superheroes.

Transcript

PODCAST INTRODUCTION: This is Emily Beauclair and you’re listening to the Smiles Included Podcast: Navigating Through Life with our Rare Disease Superheroes.  

EMILY:  Hi everybody, this is Part 2 of my interview with Sherri Blaik and I basically just took the potty training section out of the first interview and have this podcast entirely devoted to that topic. Sherri had presented on potty training at the Family Conference, so I asked her to come on this podcast and re-present what she talked about because it was a lot. It is a very intense way to potty train. But Sherri is one of the few people that I know that has a child with Skraban-Deardorff that has been successful with potty training, and that's why I asked her to come on and walk us through how she did it. One thing that I did not talk about with Sherri, and I probably should have is why potty training is such an important topic. And honestly, it's probably something that I never really thought about until I came out of the pandemic.  I'm now taking my 4 year old son into the ladies room and hoping that there is a changing table that we can use. But also that the changing table isn't right out in the open because I remember changing Joe once and just being mortified at, I guess, how undignified it was for him as a four year old being changed in front of all these women that are waiting in line to use the restroom.  It's OK when he's a baby, but it's not OK as he gets older and more aware and everyone else gets more aware that he's older as well.  A lot of times I'll try to take him into the handicap bathroom and have him stand up while I try to change him, but that gets harder and harder as well. And oftentimes when we're out in public, he's got to stay soiled for a little bit longer so we can get to the car and I can change them in the car. So that's kind of why I'm so desperate for potty training to be successful. But I really feel for the parents of older kids and adults and really anybody that has special needs that needs to use a bathroom in a public location.  If any of my listeners have a solution for this problem, please reach out to me. I would love to talk to you, and I'm sure others would love to hear from you as well. But for now, here is Sherri Blaik, who is going to hopefully help some of us potty train our children. She is the mom to Allie who has Skraban-Deardorff. So here we go, kind of picking up mid interview. 

INTERVIEW

EMILY: You had at the Family Conference talked about potty training and you're one of the few moms that has been successful. So please, please help. 

SHERRI: Sure, sure. Again, this is one of those things. I can't take all the credit for it because we had an amazing therapy team who helped us. So we used a method called Foxx Azrin. And there's actually a book out there called toilet training in less than a day. It was written in the 70s, so some of the terms they hear use would probably not be considered appropriate today, but it's the same concept. This is a method that our ABA team also recommended that they use with a lot of their children. And it's a very intense. It basically requires you to live in your bathroom. So I did it over Christmas break and I set my son to go live with my sister for a few days because you really need to 100% it's your job. I mean it's what you do. So kind of the concept is you want your child to have accidents because every accident is an opportunity to learn what to do. So you kind of live in your bathroom. You know, for her we had a stack of underwear, a t-shirt…and you feed them, you make them drink a lot of water because obviously more liquid in the more liquid out and.  There’s a whole schedule and I actually wrote up a memo that is in the files section of our Facebook page that kind of goes through all the details. But the first thing you do is you get them up and you set them on the potty for 20 minutes hoping that they go to the bathroom. If they don't, you get off and you set a timer and every 5 minutes you say you know, are you dry and then you have the child. And if you have to do hand over hand, you do hand over hand, have them touch their bottom. Are you dry? Oh, you are dry. Good job. And like, for Allie we would give her sticker because that was a motivator at the time. And this whole time you're pushing fluids. You know, for her, we had her eat pretzels. We had her eat French fries from McDonald's. Anything that would be salty that would make her thirsty. And we're really, really shoving liquid down her. I got those juice boxes and was like, squeeze them in her mouth, you know, because you want her to pee. And you do that every five minutes.  Then I think it's every 20 minutes, you would sit around the potty. And she sits there for 5 minutes. If she happens to go the bathroom while she's on the potty, then it's a huge party. Oh my goodness, she went to the bathroom. I mean, there's, you know, all the favorite things she got, M&M or whatever the motivator is, and then you get off and you do it again. And so that's why I'm saying this is literally all you do because you're setting a timer for 5 minutes and checking every five minutes and then every 20 minutes sitting on the potty.  When they do have an accident, which will happen, which is good because that's how they learn and you do a thing called positive practice.  So wherever she would be in the bathroom, I would, you know, have her touch her bottom. Are you dry? You are not dry. Peepee goes in the potty and then you run them quickly to the toilet. Pull down the underwear, sit on the toilet for a second, pull them back off the toilet. Pull the wet underwear up. Go back to where they had the accident. You know, are you dry? No…pee pee goes in the potty and you're not emotional, you're not mad. You're just saying, you know, very direct. This is how it goes. You do that five times. You take off their underwear, you put a clean pair of underwear, you clean up the floor and you start this process every 5 minutes so you can see it's extremely intense. It's all you can do. I mean, you can't even answer your phone or text or anything. So we started it with Allie at 6:00 AM we started immediately when she got out. By 10:30, 1/2 hours later she was self initiating. So self initiating is she would start feeling like she had an accident and she would walk to the toilet, which is huge. So we did that that whole day and then we kind of moved into what she and again, once she did that, it was the biggest party ever.  I think she had 10 accidents in that 4 hour time before she started self initiating.  And you can't tell them what to do because you want them to be initiating it. So we actually we used like a little potty not like our real toilet because she physically couldn't get up to the real toilet. So we just, you know this little one just sit on the floor. So I would just kind of like walk around the toilet, stare at the toilet, but you didn't say go sit on the toilet because you want them to initiate it. So once you did that the first day then we moved to like the family room.  Now we're further away and the toilets out of view.  You initiate that and then you just kind of go throughout your house. So I think it took us about four days. We did family room, we did a bedroom and then we went out in public and we tried the same thing. And when you do have to go out, like, you don't put a pull up on, you leave the underwear on and then like put a pull up on top of it because you want her to feel it wet. So you never ever do the pull up again because you want them to feel that. So that's what we did. It took us five days, six days, maybe 5 to do the whole thing. But she was self initiating the whole time. She would be, you know, two or three times and then she'd have an accident and then you just go back through that positive practice. It worked. She was five and I had tried so many things before then because I had another child already potty trained and nothing really worked. I just think that repetition is what she needed. So that was it. She was not bowel trained for about 6 more months and they told us to not even worry about that because you probably get one opportunity a day. So we just didn't worry about that. When she'd have an accident, we just clean her up and then eventually she started figuring that out too. 

But. That was our procedure. It's certainly not for everyone, because it's very intense. But I was at the point I didn't care. I just wanted to be done with it. So I was ready to make that commitment and live in my bathroom, and we took shifts. I would take a shift, my husband would take a shift, a therapist would take a shift, because. It's intense. It's hard. You know, three hours was about your Max. You you're like, I'm going to lose my mind. 

EMILY: You mentioned not being emotional. I don't think I can do that. 

SHERRI: That's why we took shifts. Because it's exhausting, you know? It's hard. And that's why we, you know, 2-3 hours and we would I had a whole schedule, you know, we all had a little shift that we did and after those 2 hours was like, OK, we need to take a break. So we had, you know, we had several people helping with it. But it it worked for us. 

EMILY: Yeah. I just want to be done with diapers. 

SHERRI: Well, I had tried all the things because I wasn't ready to do that intense program yet and I just kept trying and tried and finally I was like, I am so tired of trying different things and cleaning up accidents and cleaning carpet. I finally was we were both at my husband and I were both at the point of it doesn't matter we just we need to get this done and so that's why we did it over Christmas break which wasn't the most fun to do, but we knew that we would both be home and I could have help with, you know, my son. So that was our procedure. 

EMILY: Yeah, I mean, it's very, very intense, but I'm kind of desperate, so I think I might have to might have to try this. And is she potty trained at night as well? 

SHERRI: She is, she is. 

EMILY: Wow. 

SHERRI: Once she potty trained.  Maybe a few months later she would, she would. But she was at night. I really never put pulls back on her. I've always put the underwear and then the pull up at night. But once she kind of got that sensation that she really didn't, we just make her go to the bathroom right before bed and then as soon as we heard her, heard her getting up in the morning, we run up to her bedroom and immediately take her to the toilet. So if we waited that whole, oh, I think she's getting up, lay around in bed, she would have an accident. So we would literally make a mad dash upstairs and immediately put her on the toilet. So yeah, it was pretty quickly after. 

EMILY: That's so impressive. 

SHERRI: Thank you.  It was intense, but you know, I thought we did it so. It 

EMILY: Man, I can't wait to hear if this helps anybody else and if anybody else has success.

SHERRI:  Anyone else wants to spend a week in their bathroom living? 

EMILY: Yeah. 

SHERRI: Her ABA team again, this was a procedure they had used. They had recommended it.  Her ABA therapist had told me she had never had a child that she was not able to potty train using this method, she said. I think the longest was they had a boy who was, I think he had autism, but he was 17 or 18 and she said it took 15 days of living in the bathroom, but he finally got it. So, I mean, the fact that we were there for half a day was amazing. You know, it was wonderful because we were prepared that it might take the whole week or the whole next week. I mean, that's why we just  kind of blocked off that Christmas because neither one of us worked that week. But it may not happen in a day and, you know, you just have to be consistent, so not the easiest thing, but. That's what we did. 

EMILY: I'm going to try it. I will let you know how it goes. 

SHERRI: Let me know how that weekend in your bathroom feels.

EMILY: I know. I have to. I have to find this week that I'm going to do it, and stay non emotional, which my husband will already tell me is impossible for me. But we have to make this happen. So thank you. Thank you for walking us through that.

SHERRI:  You're welcome. The non emotional part. And it is hard because your child will be emotional because even though you're just saying pee pee goes in the potty, you're just saying it, but they know that it wasn't. They didn't get rewarded for it, you know? 

EMILY: Yeah. 

SHERRI: So she cried. She got upset, which is again why we took shifts, because a couple hours, 2-3 hours. We needed a break, you know, 

EMILY: Yeah. 

SHERRI: Then the next person who was fresh would pop in for their shift. But it is it is emotional for the child and you have to kind of be prepared that it's not going to be a happy thing for them.  So that was us.

PODCAST EXIT: Thanks for listening.  I hope you found today’s discussion helpful in your rare journey.  If there are any other topics you would like me to discuss, questions you have for guests, or if you want to be a guest on the show yourself, please reach out to me via the email included in the show description.  Please also visit skdeas.org to learn more about Skraban-Deardorff and consider making a donation to help fund research to help our kids.  Talk soon.