EC + Down Syndrome: The secret to toilet training a special needs child with great success – Down Syndrome potty training alternatives

Welcome to the Go Diaper Free Podcast where we're all about helping you potty your baby as early as birth. I'm your host, Andrea Olson, author and mom of five ECed babies. This is episode 63, EC and Down Syndrome, the secret to potty training a special needs child with great success - Down syndrome toilet training alternatives.

Welcome back, you guys. I am so excited about today's show. We have had a Go Diaper Free certified coach in our circle for many, many years now named Elizabeth. She lives in Colorado. She is a Montessori teacher as well, certified, and she has direct experience with nannying and ECing several Down syndrome babies, including her grandson. We have gone to her for many, many years for advice about this. Today's show is all about doing EC with a Down syndrome baby, the benefits of it, some examples of success stories, and just really a way for parents with a special needs child, such as one with Down syndrome, to not have to have the prescribed outcome of toilet training at five or six years old and maybe not even with success at that age. So we can give a different reality to those of you who have Down’s babies. And these children are so special and so wonderful and they really deserve their hygiene as well, probably more than we even know. It is something that is very primal, very just ingrained, instinctive. Even for children with special needs to be able to be clean and dry and to have control over communicating and taking care of this part of their hygiene at early ages is an even bigger gift than to somebody who does not have one of these special needs. Without further ado, let's go for it.

The show notes for today's episode, including a full transcript and a video of me recording this podcast, and links to anything I mention in today's show are found at godiaperfree.com/63. So you can go there and also comment at the end if you have any questions or any extra tips that we've missed.

Okay, let's do this. Did you know that one in 700 babies have Down syndrome per the CDC? And children with Down syndrome have delayed psycho motor development, which is a factor that influences the level of difficulty in toilet training. So there's a lot of research about how delayed they are in toilet training, but it all stems from this misinformation that we were supposed to wait until a child is showing signs of readiness to toilet train them, which leads most of us toilet training two and three year olds, which is the absolute wrong time to be toilet training. We should be toilet training between 12 and 18 months if we're not doing EC. So there's that part of it. But also what about this concept of doing elimination communication with a Down syndrome baby? That's what we're going to discuss today.

So there are lots of people in the Go Diaper Free community seeking this information. I get emails all the time from people who are curious because they really want to... The earlier you address certain issues with a child with this diagnosis, the more success they have with communication, et cetera, and we'll talk about all of that. So people are starting to wisen up and go, "Hey, well maybe I could do EC with them too." So for example, we have a reader from Israel who wrote in a while back. "We started EC on August 1st and really need support as we're the only ones practicing this with our son who is now 18 months. He has Down syndrome and a brain injury, and it is our goal to provide him with an alternative to diapers to make his life easier. So far poops have gone well, but I'm stumped when it comes to catching pees," and we gave her some advice about that. And my book does come with a private support forum run by our coaches and myself.

Another woman wrote out, "I had a quick question. In looking at your info, I'm very interested in your book, but I'm curious if you have had any feedback from parents of children with Down syndrome. Our daughter is two and a half, and in the last couple of days has showed an incredible awareness to her body and potty needs, which actually is quite early from what the research says about Down syndrome children and we want to jump on this opportunity and are trying to figure out the best way to go about it. Any thoughts or info would be helpful." I will tell you guys during this podcast, which of my books to use at which age for this particular diagnosis.

Another woman wrote in, "We started potty training my older son when he was 18 months. We use your book as a guideline. It went very well," she's talking about the Tiny Potty Training Book, my book for 18 months and up. "My son will turn three in May and he's now dry during the night as well. It's been great. I was planning for my second to start EC as soon as the newborn stage was over. However, things didn't work out quite as planned. Our baby was born with Down syndrome and was hospitalized for the first three months. Once we brought him home, I was overwhelmed with appointments and didn't have the capacity to start EC. He's now 11 months old and I would like to get started sooner rather than later. Doctors tell me that it will be harder for him to learn to use the toilet because of his diagnosis. They all recommend waiting until he shows signs of readiness," and again, we'll cover what those ages are, when they actually show signs of readiness with this particular diagnosis is way too late, you guys. "I however feel that because it might take him longer to learn, I should start earlier." His mom is so wise, you guys.

All right, so we have another person who had written in, and the reason I'm sharing these with you is just to show you, and especially those of you with babies who have Down syndrome or if you know somebody who does or you're caregiving for somebody who does, that there are so many parents out there who want to do something different with their child as opposed to what this doctor prescribed, which just doesn't resonate.

This woman writes in and says, "My husband and I are expecting our first child in late August, early September. We know there's a 99% chance he will have Down syndrome after blood testing results. We want the best chance for him to learn life skills as early as possible. We know how critical early intervention is for walking, speech, reading, and so much more. So when I arrived at your website, it started my gears turning that maybe EC is something we could try as well, especially since it's our first child and I will be staying at home with him and not working out of the house. My profession is in special education and I came from a collegiate program that plays a lot of emphasis on behavior as a means of communication and as in learning. A lot of what EC sounds like matches philosophies I learned in my education. EC makes sense to try, but I have some questions. How can you start EC right away if you're in the hospital, either for a short or extended stay? Do you know of any stories of people with children with intellectual disabilities that have used EC?" And I am going to answer these questions in today's podcast as well. I love that she wrote in and she did start EC with her baby, and it did go very well. And we also have some examples of that too later on.

Another woman wrote in, "Do you have any experience with children with special needs? My daughter has the diagnosis of Down syndrome. She's 20 months old. She's pretty regular in her schedule for number twos and she gave me signs when she needs to go, but I have not been consistent in training her. I just found out about your program, I would like to try it, but I don't know what book I should start with. She's not walking yet and she does some sign language but no talking yet. I really appreciate any suggestions." And the great thing is I do have an answer for which books to use at what age based on how they are developmentally different.

And another mom, "My almost four year old daughter has Down syndrome, very good at holding and releasing, but absolutely does not care about the mess, poop or pee, also not very skilled at getting her clothes back on all the time, is dry 90% of the day or more when I take her but doesn't tell me." So similar struggles that we have when potty training children who are not ECed, or even potty training or finishing up with children who are ECed, but just a little bit more for a longer period of time. And then she goes on. "My two year old is just getting the hang of it, hopefully helping her older sister. And then my three month baby boy... Diaper free intrigues me, but I feel like I miss a lot or I put them on as just a burp. I feel like I have to hover if I want to catch them on and wasting time on false alarms." This mother has her hands full with three who are in diapers. My oldest is a boy, so she... I'm sorry, she has four, was potty trained a little after two. Ambitious, first time mom.

So this woman wrote in and she has a variety of experiences, but she knows that there's some piece missing with her four-year-old who has Down syndrome.

"My son Leo has Down syndrome and I haven't had any luck potty training him," and so this is another woman who wrote in, "What do I do?" And then that her child is actually five years old. "My daughter is sweet and capable and has Down syndrome and I worry that the road ahead will be much longer and harder than it was with my son who ECed like a champ and has been diaper free since nine months. With her, it feels more overwhelming and I can't seem to catch her movements, like ever."

And the last one I have from the piles of emails that I didn't even realize I've accumulated over the years about people writing in about can I do EC with a Down’s baby. "I'm interested in EC because I've seen it work for my niece, I love the reduce waste, but mostly I'm interested in the communication aspect. I have a seven-week-old with Down syndrome and one of my biggest fears for her is the inability to communicate. I have purchased sign language resources, but I feel as though this will be something that will help us communicate sooner." Doing EC is something that she feels will help her and her baby communicate sooner, and she's absolutely right.

Okay. That's all I have for the people who are seeking this info. Hopefully those stories, maybe they've resonated with some of you, but it gives everybody an idea of what we're dealing with is different. Now I'd like to change into a little bit of statistics, not anything too heavy, don't worry, but the Jornal de Pediatria in Brazil, May-June 2018, volume 94, issue 3, they had an article called “Prolonged toilet training in children with Down syndrome: a case–control study.”

The authors, I can't pronounce their names, but you can look this up on Science Direct and read the whole thing. It says children with Down syndrome have delayed psychomotor development, which is a factor that influences the level of difficulty in toilet training, and this study wants to see if this diagnosis definitely does make toilet training take longer. They studied apparent oriented method, so more like waiting for readiness and things like that, regular conventional toilet training method for this study. They also mentioned other methods that have emerged, including assisted infant toilet training, which is EC, elimination communication, and a daytime wetting alarm. So they did not use those methods for this study, but they used regular old toilet training.

So here are the stats in this report. It is reported that normal psychomotor development boys and girls would start toilet training at 24 months and finish by 35 months, so starting at two finishing by three, taking a year to toilet train them, which by the way with my book, The Tiny Potty Training Book, it takes about seven days average to get past that first hump to toilet train. And then toilet independence is something we work on, but it should not take a year. Anyway, that's the norm. I will stop talking about that part.

A recent study in Turkey, beginning of toilet training occurred at 15 months and conclusion was 22 months, so they started earlier and it only took seven months in this study. So they started at 15 months finished before two. Starting earlier does usually mean that you finish earlier with toilet training.

In Brazil, the average age where children beginning complete was 22 months and 27 months, so in Brazil they are starting earlier and finishing within about five months. Good job, Brazilians. In developing countries, toilet training appears to occur at a lower age than in developed countries and it also appears to last a shorter amount of time. Earlier start earlier finish.

So with Down syndrome babies in this study, same study you guys, 40 months is when they showed initial interest. So they didn't show an interest in the toilet at all, which is the marker of when do I start toilet training based on everybody's opinion except for mine and a couple other people. Your doctor will tell you wait for readiness, when they show an interest in the toilet, which is actually not when you should start toilet training if you are in that boat. So if we apply that mentality to Down syndrome babies, you're not going to start toilet training until they show initial interest at 40 months old. That's three and a half years old. And this study also said that the things that they researched showed that they were complete by 57 months average, so it takes 17 months of toilet training to train a Down syndrome child only starting at age three and a half and finishing by about age five.

My question is, why wait? And we will prove why we should not wait at the end of this podcast.

Okay. The results of this study in the Jornal de Pediatria, the Down syndrome babies started at 22 months, so much earlier, and they were complete by an average of 59 months, five years old average. And I believe it's because of the method that they used. And the control group who do not have Down syndrome started at 17 months were completed by the 27 months. The point of me sharing this with you is that it took two times as long for Down syndrome children to complete toilet training as their control group. Two times as long. 33 months versus 11 months. And if by the methods that I teach in my books, we're talking you shouldn't be taken 11 months, you probably should take like a week to get over the hump and maybe a month to do toilet training in a very directive, firm but gentle way. Then maybe this Down process would only take also a 10th of the time rather than 33 months. It just depends. So we'll see what happens when we get into some more details.

So why wait? The conclusion of this study is children with Down syndrome experience prolonged toilet training time as versus children without. Well, duh. Okay. We kind of knew that was going to happen, but they definitely proved it. But why do we delay toilet learning beginning with Down syndrome children? "Oh, because we're waiting for readiness signs," but that came from diaper companies, Pampers specifically, who hired a pediatrician, Braselton, to do a study to tell parents to wait until they're ready because they weren't selling enough disposable diapers. And that just comes down to billions and billions of dollars. That's why we're told not to toilet train until two or three years old, you guys.

So with a Down baby, we're telling them not to start until they show an interest in the potty, which is about 40 months. That is way too late to start, my opinion. My opinion.

So with language, with a Down's baby, you're supposed to start early by using American sign language, and sign language programs really help with the outcomes of communication with Down’s babies. We also start early with other skills, like we start early with therapies to teach other skills that they need, just basic life self-care skills. And then with movement, we start to support proper movement development early with certain therapies as well with Down’s babies, so why not toilet training? And this is where EC comes in.

I've got two success stories for you. This first one is very, very brief. Elizabeth, the woman who is one of our coaches in Colorado and a Montessori teacher, she said, "I've seen the blessings and challenges in raising a child with Down syndrome in my daughter's family. My three-year-old grandson, Blake, has opened our eyes to a whole new perspective on life." They began at 10 months. Her daughter knew that she did EC with babies as their nanny and as a Montessori educator. In her Montessori class, she gave me one example of starting with an infant in their infant class at two months, starting EC, and the parents at home were doing the Go Diaper Free methods at home with my book, and that child was pretty much toilet trained by 12 months old. So Elizabeth had a lot of experience, her daughter knew about it, and when her son was 10 months old, they decided to start ECing him.

"My grandson is very proficient in toileting at three years old and communicating with ASL signs with oral language attempts. He delights everyone who he tries to communicate with." You guys, seriously, that is just proof in the pudding.

All right, and then I have another story. This is from a woman in our Go Diaper Free community called Eugenia. She comes from Russian roots. She said, "The boy that I took care of was born with Down syndrome. I became his nanny when he was eight weeks old. It did not click right away that he was a special needs child because that baby looked at me with his big beautiful eyes and all I could see was how perfect he was. It took me a few days to figure out what was going on because his parents had a hard time coping with the fact themselves, so I do not blame them for not being able to talk about it. When I found out, I decided that I will treat him no different as any other kid, that I will have high expectations and hopes for him. He thrived with therapy and all the love that surrounded him. He met all his goals. And when he turned seven months, I decided it's time for him to start potty training." She's doing EC with him.

"I started taking him potty after breakfast and he immediately went number two on the toilet." Natural timing. "We used his older sister's potty seat. I held them around his waist because he was still too small. In the evening, I showed his mother after his snack and she said that I should continue doing that since it worked well. His family joined in on potty training a little later. It was not always convenient for them, but by then he knew what was going on and he did what he needed to do with backup diapering. He is seven years old, fully trained for more than five years. I stopped being his nanny when he turned two years old, but we're friends with the family and I see my former charge very often. Bottom line, special needs kids can be potty trained with the same approach as other children. People just need to have faith and patience." And I would edit that, not what the same approach as other children, but they can be ECed the same as we EC other babies who don't have special needs. And this child was fully trained before he turned two years old. She started EC with him at seven months, fully trained before two.

Elizabeth's grandson, three-year-old, proficient in toileting. You guys, there is no way I can't even... I mean, I hope this gets into the right hands, but if you know somebody or you have a child with Down syndrome yourself, this is key. This is essential. This is something that can help your child, somebody else's child, so quickly. Seven years old, fully trained for more than five years. That child should only have been trained for two years, and this is just amazing. And let's talk about some of the benefits of EC for special needs children right now.

“One of the most,” and this is from Elizabeth, our coach in Colorado, “one of the most important reasons for all infants and toddlers, but especially for those with special needs such as Down syndrome, to participate in EC is for the potential for brain development that EC can produce. This is the important thing to understand whenever we feel weary or discouraged with EC. The purpose for our efforts is not dry pants. It is to provide opportunities for development of a young child's will,” which is a very Montessori concept, “something that can only occur through interaction and development of brain and muscle control.” You guys, also the communication benefits. I mean, we already see that in children who don't have special needs, that it enhances and increases earlier mobility, earlier communication, self dressing, independence, self-confidence, dignity. Our babies who have special needs deserve this as well.

So if you have listened to this and now you want to start doing EC with your baby, here are our suggestions, this is some of Elizabeth, mostly Elizabeth, and a lot of mine as well.

Number one is to start EC early. Which book do we use at what age? You can go to godiaperfree.com/store, you'll see my two books. I would use Go Diaper Free, my EC book for ages zero to 36 months for children who have Down syndrome or another developmental delay that's similar in cognitive impairment. After 36 months, because of the statistics that I shared earlier of they don't show interest in the toilet till 40 months, I would say if you're coming to me after 36 months with a Down syndrome child to use the Tiny Potty Training Book, which is my potty training book, there is a special section in that book for special needs.

Elizabeth shares another bit of advice, so the second bit, "My experience has been that the sooner your child starts wearing cotton underwear, such as Andrea's Tiny Trainers or the LEARN design of Tiny Trainers which has the bear on it, they help self-dressing,” and those are found at tinyundies.com, my other website, “the sooner and more consistently she will be toilet trained. Keep a consistent routine for her, integrating toileting before and after eating, sleeping, going out and upon arrival. Trust in her ability to progress, to progress in toileting even when other people tell you otherwise. Set up a bathroom environment that aids her independence in toileting and dressing such as having extra training pants within her reach.” We'll talk more about that in a second.

“The third thing I want to share with you as a suggestion,” you probably hear my baby in the background, “suggestion is to find a Down syndrome research and treatment center in your area.” She has one in her area, childrenscolorado.org, and they help all across the United States with resources for parents.

And next bit of advice, so the fourth thing, “I also recommend that you attend weekly signing smart classes if they're available near you, so some kind of infant sign language class. These are fun classes that will increase her receptive language and communication with ASL signs and words used together.” And she mentions again her three-year-old grandson who is communicating with ASL signs and with oral language attempts, and he is trying to communicate with everybody with both the words and the sign language found in the signing smart classes.

Elizabeth also recommends, as a final recommendation, the Babymoves book by Marianne Hermsen-van Wanrooy, to help develop the baby's motor skill for walking and independent toileting. I have more to say about that as well, where she expanded in a later email to me, but the links for these are in the show notes, godiaperfree.com/63.

“So regarding the choice of the two Babymoves books, there are two books. The most helpful one is the first Babymoves book because it has many photos of babies in various stages of movement development from birth to walking. The second book, Babymoves For The Child With Special Needs has no photos. It refers to the first book, explaining how the information and photos apply to all children, including those with Down syndrome and other special needs. It provides support to people who think that children with special needs have different movement development due to their special needs and they require a different plan. They actually don't. This book explains that children who have developmental delays still develop their muscle control in the exact same sequence of events but at a slower pace. So it recommends focusing on aiding the current stage of development rather than trying to teach the next one, which the child is not yet ready for.”

So she goes on to talk more about Babymoves book, but basically the first book is more important in Elizabeth's eyes than the second one. And the second one can just add to your knowledge about that. So use that if that helps you. And again, I'll link to that as well.

She also stresses, "Keep in mind that you're developing toddler wants to do things by herself. So your challenge is to find ways to aid her independent movement through her environment that provides her access to things within her reach and allows her to learn through her mistakes." For example, she could learn how to drink from an open cup without a lid through trial and error and controlling spills that she feels on her chest. And she uses Baby Bjorn cups in their infant class in the Montessori school for that.

So the sequence of muscle development is the same in children who are progressing at a slower pace, and the Babymoves book explains how different factors in the environment can interfere with the development of this muscle control and how you could actually aid the weaker muscles through appropriate body positions and movement activities that were missed in previous stages of development. You'll discover what motivates your child to move at her current stage of development, which will be different motivators than those of a younger child's. If you're working with a three-year-old who has Down syndrome, their motivators will be different than those of a younger child. So Elizabeth, oh my gosh, thank you so much for sharing that about movement with the child.

Elizabeth goes on to share this about ASL sign language. "It is most helpful to use the key word sign while talking during daily routines such as eating, dressing, toileting, and reading books. Children learn more easily when they integrate a motor movement memory of the word so they're doing at the same time as saying and signing," or you're saying and they are signing while they're doing. “Perhaps there is a speech therapist in your area who works with ASL signs with words,” so we can also integrate that with EC, which she'll mention next.

The last thing Elizabeth had to say is, "Regarding aiding this child's toilet learning," child with Down syndrome, "make sure her underpants are easy for her to pull up and push down. Provide many opportunities for her to wear just underpants, cotton, without pants around the house so she can practice taking them off and putting them on. Let her have access to reaching for clean ones, as well as putting wet ones in a hamper, and washing her hands with a variety of different types of interesting soaps and towels. These are the types of independent activities that interest her. Have her sit on a low stool when changing her underpants rather than laying her down passively in a baby position. Have a full length mirror in the bathroom to help her see how she gets dressed and undressed. Also, use the mirror to aid her independence and other self-care activities such as nose wiping, teeth brushing, hair brushing and face wiping. With all these self-care activities, everything should be within reach for her frequent daily practice."

So that is all that Elizabeth had to share. And I want to add a couple of things, when starting EC with a Down syndrome baby earlier on, like zero to 12 months, really zero to 36 months like I said, but really start in infancy as you can. So if you're in the hospital, here's my advice, you want to do the same things that you would be doing at home to start EC with this baby. You would do observation time, which is covered in my book, you would be listening, figuring out what signals are, if any, getting used to natural timing of bowel movements and peeing, and also connecting with the baby on a different level that EC provides access to. Hospital, same as home, you just modify for the environment you're in. You can use the pads, they give you the Tucks pads to do observation and also potty your baby over if you feel like doing that soon. But you can also start whenever you guys feel medically and physically capable of doing that a few months later. Totally fine.

Other thing, focus on the four easy catches, which are covered in my book and on my YouTube and in my podcast, wake ups, diaper changes, getting in and out of something, and poops. We want to do observation just like I teach in the book, just like I teach with a person or child who does not have Down syndrome. And then if you are 36 months and above with a Down syndrome baby and you want to do the Tiny Potty Training Book, there is a special section in that book that just tells you how to modify things a little bit for special needs and just reminds you that it takes a little bit longer.

So the point is, not make it go faster, but just to start earlier because our babies are born with exquisite instincts, even if they have intellectual delays. And it is very, very primal for them to want to be clean and dry. So you're going to have a lot of luck if you do this, and sign language. And you set up the environment in a way that aids all of this learning and you understand the development patterns that are coming and you have lots of support through some kind of an organization that provides you support for having the therapies you need for your child to be most successful.

So the bottom line, I know this was a long one today but I really hope it was very helpful for those of you who are looking for this information. Bottom line is that you can and should do elimination communication with your baby who has Down syndrome and start as early as you feel comfortable, as early as birth. It is likely to give benefits beyond dry pants and it is a gift that can help any less mobile, nonverbal, intellectually-challenged baby, thrive. Not just survive.

Again, you can find the show notes to this episode of the Go Diaper Free Podcast at godiaperfree.com/63. I would love for you to comment with any more questions you have, any tips you have that I didn't cover or anything else that you know that we didn't talk about today. Please leave a review on iTunes so more people can find out about elimination communication. If you have a moment and you could do that, that would be awesome. And I'll see you next week where we will discuss more things about elimination communication and make it much easier to potty your baby as early as birth.

I really hope you've enjoyed today. And I'm so glad and grateful for Elizabeth out in Colorado and all of the other moms and dads who have written in, inspiring this work to continue. Thank you, guys. I'm Andrea with Go Diaper Free and I'll see you soon.