Dr. Rachelle Sheely is the co-founder of the autism treatment Relationship Development Intervention (RDI®). In this video, she and Kat Lee discuss healing and encouragement for the whole family, both the parents and children, through the support of the RDI® program.
One of the most common toughs I see with parents is … and I think it becomes a little fixed in their minds, understandably, is not feeling that they do have a role in their children’s lives. And I think that, unfortunately, well-meaning people in their lives kind of direct them that if others can be involved, others will be able to fix their child.
I’m not saying people make promises. Nobody has a crystal ball, but I think that leads the parents to even less feeling of empowerment and competency as parents. And in fact, I see them really not knowing their role as parents. I’ll say anymore, if they ever did, once this all occurred.
I’ve seen the same thing, Katherine. I’ve seen where these people who are intuitively such good parents, because you can see it with the other children, so it’s not as if we’re just saying that. They’re intuitively good parents. All of a sudden, everything gets shaken up, and what worked with all of the other five or six (this is Houston, where people have a lot of children), what worked with all of the children, for some reason, isn’t working with this child. They figure out how to get the child’s attention, but what they do to get the child’s attention doesn’t necessarily mean that it’s growth-promoting.
And then, when they see that the child is still stuck, they really don’t know what to do. It is hard, and for people who look at a parent with a child on the spectrum and say, “Why don’t you do this? Why don’t you do this? Of course, he’s not talking, you figure out everything he wants, and you just give it to him.” People who have all of these excuses without really understanding how hard this is. I think that it’s such a disservice to the parents because they are doing the best they can, and they actually know how to do it. It’s the child who is not bringing enough to the table.
And so, from my perspective, when I start working with a family, I try to help them understand that I have to help them help their child be a good apprentice to them. Because when the child becomes a good apprentice and hangs on their words and is trying to see the world through their eyes, I wouldn’t say they’re home free, but boy, they’re going to move very quickly and it’s going to feel more normal.
I think it is so interesting how your words are so comforting to me, but I think about the discomfort that comes from parents coming to feel or being told that they shouldn’t be involved in this process. It’s almost an opposite world to the feeling you’re giving me now. I think that’s such a sadness for me.
It’s a sadness for me, too. I know that when I speak with parents the first time and we’re talking about how we’ll work together, it’s a combination. It’s like this is what I’ve always wanted. I always wanted to be able to parent my own child, but because their child is not growth-seeking and they have been stuck, unable to growth-promote, then there’s that fear of, “How can I do this? I don’t know how to do it. You might say that, but I don’t know how to do it.” And so, there’s that combination of that’s what I’ve always wanted to do combined with I don’t think I can do it.
I wonder, too, about … I thought that I won’t be able to do it. This, that has happened, has made that not a possibility. I don’t know if it’s actually spoken, but I’m thinking about an internal discussion a parent may have with themselves.
I think that’s true. I think that’s exactly what happens. And so, for those of us who are consultants, we really have to be sensitive to where parents are coming from, and we can’t in a glib way say, “Oh, you’ll be great. Let’s just get in there and do it, you’ll see.” I think we have to help parents understand that there’s a process that’s very important to us. And that process has to do with figuring out where everybody is and then moving everybody along, including the parents and ourselves and the child, with just noticeable differences and with challenges. Being just one step ahead of where the child is and where the parent is. I think when parents begin to understand, “I’m going to be careful with you. I’m going to be sensitive to you. I’m going to be sensitive to your child and where your child’s coming from,” it makes it easier for them to take the chance with something that’s been hard.
You know, I’ve had parents say that coming into RDI was the first time they felt somebody listened to them about their relationship with the child, listened to them rather than directed them.
I think the thing about listening to people, too, is to be listening to the things that aren’t being said and to be listening to the things that are going on in the family. To me, it’s really important that not only do we help the child who has autism become a better apprentice to the parents, but we help the parents go back and restore what they’ve lost in their relationship with each other and to restore how the siblings are feeling. And so, once we begin to think of this family as this great family that just needs some help moving forward and to be a family where autism isn’t at the center of the family, is very freeing.
You know, I love that you say that. I remember when we started on this journey 22 years ago. And we had a lot of professionals in our life, and one of the things that struck me not long after the start of that journey, was that the folks, well-meaning people, absolutely, tended to not seem to realize that there was kind of what I call a BA – before autism – to us as a family. They only seemed to see the AA – the after autism. And in a sense, again, well-meaning, they treated us as that was our identity. And I think that is very damaging and really can create a loss of sense of self.
And you can even see that displayed in email addresses, that sort of thing. And where autism is the center of even something like an email address. I think it’s so important to know where people are and to not make it a sink-or-swim experience. We’re all in this together, we’re going to move forward, you’re going to let me know how you’re doing, and I’m going to let you know how I’m doing. And you’re not an autism family anymore, you’re a family that’s dealing with something that’s difficult, but that’s not going to be who you are.
You know, I know that I’ve talked about this before, but I try to network with people in the community, and I can remember, over a lunch with another very lovely professional, her just suddenly blurting out, “Parents shouldn’t be teaching their children.” And I said, “Are you saying that I shouldn’t have ever taught my son?” And she said, “Yes, that’s what I’m saying.” And to me, that is being a parent, from the very beginning, you remember those moments when they’re trying to walk and you’re like, “You can do it!”
That’s the point. The point is that … that’s the point, that where does the mind come from? Parents grow their children’s minds. And that’s why it’s so important that we show parents yes, you can still do that. We want you to go back and do that. One of the things I love about RDI is that we don’t say there’s a cutoff. We don’t say, “If you haven’t done it by the time they’re five, well that’s it,” no. We say, “Your children are your children, and if they’re 13, we’re going to help you move forward with a 13-year-old. If they’re older than that, we’re going to help you move forward with that.”
And it never ends, as we know as parents of older children, being a parent doesn’t just stop. I remember my sister saying to my mom once her children were gone, “You didn’t tell me that it was actually harder once your children are gone because they’re making all these decisions.” You’re always a mom. Always.
And I think one of the things that has made sense to me since I’m a grandmother now, of course anybody who’s watching will know that I always throw in something about my grandson, so I’ve done it now. But one of the things that I had forgotten is how time-consuming it is to be a parent. And for professionals who have never had children or have never struggled in this way, they don’t know what it’s like to have to fix meals, and be up in the middle of the night, and to have a job with all these things going on. So sometimes, they over-organize what a parent needs to do. For me, and I’m guessing for you as well, Katherine, when I’m working with a parent, I would rather give them too little than too much. I want them to go home thinking, “I can do this.”
And I know that if we can get parents on the right track to begin with, they’ll begin to take on their own learning, just as their children will. So that over-scheduling, I think, can be hard for somebody who doesn’t have a child.
I do think so. I also think, for the parents … and one of the things I love about RDI is that we’re not just looking at what the child can’t do. We’re looking at ourselves as guides and thinking about ourselves first. And I think it’s beautiful … a lot of times, in the beginning, parents will be like, “I just want to think about them. We don’t need to think about me,” and I’m like, “No, to be what you need to be, you need to be thinking about yourself as a guide and not judging yourself as a person, but thinking about you and thinking about your own obstacles. And we can do it together.”
I was working with a mom, which is what I always do. I always have people write their mission statements, and she said, “In six months, I’d like to have lunch with a friend,” and I thought yeah, right? We’re going to work toward that one. That’s a good one.
Yeah, or they would love to go on a date with their husband or what have you. And as we both know, both moms, those are things that you have to mindfully arrange. When you have children they don’t just fall in your lap and, you know, it’s just not, “Oh, let’s run out tonight and have a date.” But it’s so important to the fullness of self. And I see it over and over again, where parents, moms and dads, have lost their fullness of self.
I love that phrase. I hadn’t thought about it for a while, but that fullness of self gives us a springboard from which we can actually gift others. If we don’t have that fullness of self, it’s like everybody’s eating out of the same loaf of bread.
It is. And if you’re not fullness of self, you don’t have a self to give your child. So, it’s very, very hard. What would you say to a parent who feels they just aren’t enough for their child? They feel that they’re out of their league or they’re just not capable of being competent. What do you say to those parents?
I think the first thing I would probably say is, “I understand that. I understand where you’re coming from, and the reason you feel that way is not because of who you are but because of what autism has thrown at you. And so, let’s get started and see how you feel about this in a few months. Let’s go slowly. Let’s think about where you are and move forward in that direction.
And what would you tell them about the other voices in their life that may be telling them other things?
Well, you know what I would say. I would say change your phone number.
Turn the voices off. It can be hard to do, because I think…
Because sometimes it’s your family.
Well, and that’s the truth. What are you doing? I’ve even heard, “What do you know about autism?” But you do know about your child.
You do know about your child, and when you think about the guiding relationship and how intuitive it is once the child is growth-promoting, which happens so early. You know, you just kind of get into sync. Once we can help the parent get their child there, then they do feel very competent. But because the child isn’t bringing enough to the table through no fault of his or her own, I think that’s what kicks in with the parents, and it can be devastating.
Well, as you and I have talked about so many times, there’s so many voices in the parents’ lives. There’s family, there’s professionals, there’s friends, friends who are doing something not guiding their children. So, I think it’s so important for parents to know that that heart they feel for their child is still there and is still something they need to listen to.
And I think what makes it really, really hard … all of those things, for sure, do, is when your spouse isn’t with you. And your spouse is critical and feels that you are the reason the child is in the situation that you’re in. It’s why it’s so important, if you can do it, it’s so important to have both parents on board. And they may not be on board in the same place. But that educational piece, where you explain what’s going on, how this child’s neurology is different, how what the child’s bringing to the table is different through no fault of his own and through no fault of your husband, can sometimes ease that tension. And once they’re on the same page, the accusations stop.
Well, and so much of that is born of fear, isn’t it? A lot of what we’ve talked today, when you get underneath what’s really going on, it’s, I think, the fear. Don’t you?
I think it is the fear, and I believe it’s one reason why we focus not on … I mean, we have objectives and we focus on the objectives, but we have this overall goal, and the overall goal is, “Where’s your child going to be at 21?” So, you see this cute little two-and-a-half-year-old, and when a parent says, “I just want him to be happy,” or, “I want his handwriting to be legible,” and all those things are very valid, but I always come back to, “My goal, as your consultant, is to keep you focused on him being as independent as he can be when he’s an adult.”
I said 21, but it can be any age. As long as we’re going in the right direction, it doesn’t matter, but I think it is important to always be focused on that independence. Otherwise we go down bunny trails and we spend time on things that aren’t going to get us there.
I love what I’ve heard you say, and I think you said it more beautifully than I will, but we don’t have a crystal ball. We don’t know who this child of yours is as an individual, so we don’t know where they’re going, but we want to help you get there.
And what we can say is we can’t say everybody’s going to be a PhD, but we can say that everybody will reach their potential. And that feels good to me.
You know, I still say this about my son, but when he was younger I found myself having to say it even more often, which people would say, “Well, he’s not here. What are you going to do? Be like this when he’s grown?” I’d say, “You know, my son, as many children are, is not on the same trajectory in time as other children are, but that’s okay because he’s got time as long as I acknowledge we have time and am willing to see that it’s okay if things take longer to get to those points.” And I think…
Yeah, I agree with you, Katherine. For me, it’s not, “In the fourth grade is your child doing what every other fourth grader is doing?” And sometimes we hope they aren’t doing those things. Or in middle school. But it’s not whether your child is doing the same thing at the same age, but are their feet still going in the right direction? Are we still seeing progress? Are we still seeing them move ahead?
A lot of times, people think it’s going to be easier if you … well, the old term of Asperger’s if you have a child who’s already talking, but that hasn’t been my experience. I’ve seen children who didn’t have any words until they were five or six years old move forward and do really wonderful things. And I’ve seen other kids get stuck. It really has to do with that momentum and figuring out what the next step ahead is and know that you’re working toward whatever the potential is, that you’re going to help your child reach it.
Well, I think that this has been excellent. You could just do this without me by yourself.
Well, isn’t that what we all aim for. I was thinking when you said that, that’s what we say to parents, “I’m here to work myself out of a job, not into a job.” So, I don’t think you’re going to be able to work yourself out of a job here, but I think it is great that parents understand they’re not making a lifelong commitment to me. I’m making a commitment to them to move them into independence, just like they’re, in a parallel way, making a commitment to their child to move the child into independence.
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