Transcription:
Talking to Your Child With an Intellectual Disability About Their Body with Megan Coral, MS, LMFT

Maggie McKay (Host): Possibly one of the most awkward conversations parents have to have with their children is about their bodies, including topics like sex, inappropriate advances, personal hygiene and more.

But what if your child has an intellectual disability? Should the conversation be different for them? Joining us today is Megan Coral, Licensed Marriage and Family Therapist, to share some advice on how to talk to your child with special needs about their bodies.

Welcome to Conversations Like No Other, presented by Valley Health System in Ridgewood, New Jersey. Our podcast goes beyond broad everyday health topics to discuss very real and very specific subjects impacting men, women, and children. We think you'll enjoy our fresh take. Thanks for listening. I'm Maggie McKay.

Megan, thank you so much for being here today. I can't wait to dig into this topic. For starters, how do parents start talking to their child about puberty?

Megan Coral: Thank you for having me, Maggie. I'm so excited to talk about this. It can be really tricky for parents to talk about puberty, especially when their child has an intellectual disability or developmental disability or Down's syndrome. Parents can feel like it's overwhelming or like they shouldn't talk to their children about their bodies. And we can all feel uncomfortable talking about our bodies. So, I say start young. Start as early as you can by talking about different parts of the body. So when parents are doing things naturally with their babies, like washing their babies, letting them know what their body parts are, just like an arm or a leg, talking about a penis, a vagina, testicles. We just get comfortable talking about parts of the body just like they're any other part of the body.

And as we lay that foundation, we can build upon what we've already taught our children in terms of keeping their bodies clean, in terms of knowing who is allowed to touch their bodies and who is not allowed to touch their bodies. So, we want to be starting as early as we can and getting comfortable using anatomically correct terms. One thing that is a major pet peeve of mine is when parents talk about anatomically correct parts as cutesy names like cookie or peepee instead of penis or vagina, because it leaves our children vulnerable.

Maggie McKay (Host): Right. I hate to tell you, Megan, when my son was really little, he said, "What's the name for that?" And I said, "Oh, there's no name for that, for girl parts. There's no name." That's the worst. That's even worse because I just didn't know what to say. I was so taken off guard. And then, my husband said, "Just tell him the right name." So, if your parents didn't talk to you about these kinds of things, how do you get comfortable starting the conversation with your kids? What should we say?

Megan Coral: I mean, the first thing I would say is that we practice. Practice with partners, practice with co-parents. Start talking to other caregivers, people who care for your children, that you're going to be using anatomically correct terms for their private parts, because you want your children to be knowledgeable and to be able to tell you if someone is inappropriate with them, especially in their private parts. So if someone is touching them in their vagina or their penis, you want to know that. And so, we need to be able to have them say, my penis, my vagina, and be able to know the difference.

Maggie McKay (Host): Right. That is important. What if a parent has a child who tends to fixate on information? How can we communicate with them without the child getting stuck on it?

Megan Coral: Like I said earlier, we want to lay that foundation of talking about anatomically correct parts from when they're little, and then explaining as they get older and not just chronologically older, developmentally older, what is going on with their bodies. And so, we want to provide accurate information because kids have a lot of questions. And so, we want to answer questions the best that we can in clear, short, specific sentences and make sure that our kids understand what we're talking about. Parents can tell when their kids understand what they're talking about. And if you're not sure or you're not clear, you can always ask them to summarize. "So, what did I just say to you? What did you hear from what I said?" To check to see if kids are understanding.

We can teach our kids who are nonverbal all about their bodies using pictures accompanying our words. So if we lay that foundation, our kids are less likely to get stuck if we answer the questions in short, clear, specific sentences. We tend to get long-winded when we're uncomfortable with topics. Puberty, body changing is very uncomfortable for some parents, especially if your parents didn't talk to you about puberty and your body. And letting our kids know that your body's going to change and your mood is going to change, and these are the things that you can expect. You're going to get hair, your weight is going to change. I don't know if your parents still do this, Maggie, but "Your weight's going to change and just your hips and your breasts and that's it." No, we gain weight everywhere. And I think a lot of our girls, our biological girls are not aware of that and not ready for that. And our boys aren't ready for that either. They don't know what's going to happen in all the ways that we're going to change.

So if we're giving our kids that foundation, if we're giving them age-appropriate information and, again, developmental age, not chronological age, because kids with intellectual disabilities are different chronologically versus developmentally. We want to meet their developmental need. If we give them that foundation and that information, then we can help them move through their concerns, so they're less likely to get stuck.

Maggie McKay (Host): So smart. What can a parent do who is struggling to teach their child about keeping their body clean, but it's just not working? Whatever they tell them, it's not getting through.

Megan Coral: Picture schedules are really, really helpful. There are so many easily accessible picture schedules online. One of the things I'll have parents do in my Triple P classes is I'll have them take pictures of a child doing an activity that's supposed to be done in a certain order. So for children who need help with hygiene, we might have them in the shower with their clothes on and have them pretend to put shampoo in their hair. Kids like to ham it up and be the star of the show and show them that picture.

So if a cartoon picture schedule of getting in the shower and taking your clothes off and letting the shower warm up before you get in there and then shampoo and then condition and then putting soap on your body and rinsing your body and making sure it's thoroughly clean is too hard, then we might use the child as the star of the show and we can shape that behavior. For even kids who are nonverbal, picture schedules are especially helpful.

Maggie McKay (Host): Any suggestions on how one can help their daughter manage pads and tampon?

Megan Coral: So, pads and tampons are different for everybody. We want to teach our kids because all kinds of girls don't know when they're supposed to change their pads or change their tampons. And some girls with intellectual disabilities may not wear tampons and pads might just be too tricky, so that period underwear is great, disposable and washable, but also setting them on a schedule, telling them, "Every few hours, this is when you need to change it" and being really clear and really specific about when you change it.

I've worked with parents where the children were changing their pads entirely too often, and then they're going through a pack of pads in an entire day and kids who are struggling to change it at all, and so there's lots of leakage. So, you want to be clear with your child about when they're supposed to change it and what it's supposed to look like. And if they need assistance with changing their pads, showing them how they could get that and who, as a trusted adult, could help them with that.

Maggie McKay (Host): Here's a big question, how does a parent stress that their child's body belongs to them? And how to tell them to let the parent know if somebody makes them uncomfortable?

Megan Coral: So if we start talking to our children about, "This is your body and no one is allowed to touch your body but you," and these are the exceptions, if we're changing your diaper, kids of all ages with developmental disabilities may be using a diaper or changing period underwear.

Touches should not last longer than so long. It shouldn't make you feel uncomfortable. An adult especially, but even a child, there should never, ever be a secret between parents and children. There's a difference between secret, surprise and private, and there should never be a secret between the parent and child.

A surprise is something that we might keep for a little while, and that's going to be when everybody finds out, everybody's going to be happy about that. Private is something you do in your room by yourself. And a secret is something that's never told. And so, we don't want to have that between our parents and our kids. We want our kids to be able to ask us any questions they have.

We know that kids are going to get exposed to pornographic material on their various forms of media, social media, the internet, and we want them to be able to come to us when they see things. We know that kids fixate on images especially, and we don't want them to fixate on pornographic images and not know what to deal with that, or any images that make them uncomfortable. So, we want to create that foundation for our parents and our children that they can have that conversation.

Maggie McKay (Host): You mentioned earlier, resources online, for instance, keeping your body clean charts and things like that. Are there any books or videos that you recommend parents use as visuals?

Megan Coral: There is an absolutely wonderful guide out of the Vanderbilt Kennedy Center, and it's a step by step book for parents to talk to their kids about their bodies, talk about hygiene, talk about puberty, talk about what's going to happen. And it talks to them about masturbation. It talks to them like how to explain all of these things to your children who have intellectual disabilities. And this book is made specifically for boys, for girls with intellectual disabilities. So, out of the Vanderbilt Kennedy Center is one of the resources I would recommend. And in the back of their book, it gives you other sites where you can find picture schedules, but even just typing in picture schedule for showering online will show you picture schedules that you can find for your children. You can also make your own as your child with the model, and I think a lot of kids enjoy that more than something you might find online.

Maggie McKay (Host): And do you have any suggestions for direct communication about understanding peer expectations or social cues?

Megan Coral: So, we want to talk to our kids, especially if we know that they don't understand social cues or have difficulty with social cues. We want to explain to them and use role play if needed. Role play is really effective. I know some kids don't necessarily like it, but a role play is really effective for helping kids navigate social situations. And a parent can pretend that they're the peer who's pressuring their child and talk through with your child what you would do in that situation and how they can handle it. You want to keep the dialogue open. You want to help your child understand what they may not fully grasp.

So, one thing that comes to mind is your child is probably going to hear their peers call their body parts different things. They're going to hear other things from other children using slang terms. So, the one thing that comes to mind is, for boys, nocturnal emissions, they're going to hear their peers call it a wet dream. And you want to tell your child what that is so that they're not feeling like they're left out of the conversation or they don't really know what is being said around them and to bring any questions that they have about their bodies or about puberty to you. We don't want our kids getting the wrong information. We don't want them learning about how people get pregnant from wrong information. We don't want them learning about sex from wrong information. We want our kids coming to the most reliable source, which is you, with clear, accurate information. We want to teach our kids very important messages about masturbation from you, not from their peers. And we don't want them to feel shame or ashamed because they didn't get that information from you, so they're confused by it.

I mean, one of the things that I find for girls who don't know that they're going to get a period, if they all of a sudden start bleeding, it's, "I'm dying. And I felt so uncomfortable. I was so worried about it. I didn't feel like I could talk about it." The other thing is some of these genetic disorders come with delayed puberty or early-onset puberty called precocious puberty. And so, your child might not go through puberty when everyone else is. And so, we want to have these conversations with our kids before, so that they're not surprised by what's coming.

Maggie McKay (Host): How can I teach my child about appropriate and inappropriate touching as well as behaviors that can be done in public and those that are only done in private?

Megan Coral: We can teach our kids what masturbation is, that they're going to feel sexual urges. I think one of the things that happens for people with intellectual disabilities and children with intellectual and developmental disabilities is we consider them to be asexual and that they don't have these sexual urges, and so we don't tell them about, "You're going to have all these feelings and what you want to do with them, or what you could do with them." And talking to them about what masturbation is, and that masturbation is done in private, and making that distinction between what public behaviors are and what private behaviors are, and that masturbation is always private. So, we want to teach our kids that this is perfectly normal. It's part of what happens for your development. And there's nothing wrong with that. You just make sure that you do it in your room privately.

Maggie McKay (Host): How can a parent help their child understand what a crush is with reciprocal behavior versus harassment?

Megan Coral: So, we want to first model what reciprocal behavior is. We can show our kids through role play what reciprocal behavior is. There's a wonderful book called Boyfriends and Girlfriends. The author has all of these wonderful tips about consent and what is a crush, what is harassment. And a crush might be we talk to somebody that we like, we feel excited when we're around them. But we want to take their nonverbal cues and we want to teach our kids specifically what nonverbal cues indicate that somebody doesn't really want to talk to us anymore. They're not looking at us anymore. They're not talking to us. They might be walking away as we're talking to them.

And we also want to teach our kids, especially with technology, that we're sending one, maybe two text messages before we get a response. And we have to kind of get help from our parents and to see if we're reading the nonverbals, because it's very hard through text message. But even in person, we want to make sure that we're not continually giving somebody attention that they don't want. So, practicing with your child what does that look like.

Maggie McKay (Host): I hear a little bit of a theme that seems like very good advice to try to keep the communication open when it comes to these topics and have them come to the parent instead of, you know, maybe their peers.

Megan Coral: Right. Because the kids will go to their peers naturally. They want to fit in and puberty and bodies and sex are all fun things to talk about with your peers, but that's not where we get accurate information.

Maggie McKay (Host): Megan, is there anything else you'd like people to take away from this conversation?

Megan Coral: I want parents to know that this can be a scary conversation. It's a necessary conversation. And once you start it, the earlier you start it, the easier it is. Check back in with your kids about how they're feeling about it. Check back in with your kids after they experience their first period or they experience these changes with their bodies about is it what they expected? Have these conversations with your kids. It is an essential milestone for your relationship. If you feel uncomfortable talking about these topics and you feel like you want extra assistance, as I said, the Vanderbilt Kennedy Center booklet is wonderful and our professionals are here to help you, guide you if you need it, to instruct our kids with the best information that we possibly can give them. We just want to prepare our kids.

Maggie McKay (Host): Megan, thank you so much for this valuable insight and practical advice, which is so useful for parents who have to eventually broach this topic. All parents do, so it's good to have some resources to know about. Again, that's Megan Coral, Licensed Marriage and Family Therapist.

For more information about Triple P Positive Parenting Program at Valley, please visit valleyhealth.com/triplep. If you found this podcast helpful, please share it on your social channels and check out the full podcast library for topics of interest to you. Thanks for listening to Conversations Like No Other, presented by Valley Health System in Ridgewood, New Jersey.

For more information on today's topic, or to be connected with today's guest, please call 201-291-6090 or email This email address is being protected from spambots. You need JavaScript enabled to view it.. I'm Maggie McKay. Stay well.