Kat Lee: I had this said to me at least three times this week, by different parents. They all say to me, “Thank you so much for saying you have a vision of my child doing this or that.” All I ever hear is what expectations not to have.
Dr. Sheely: Is that right?
Kat Lee: And I think that’s one of the things … I kinda of have a short list that drew me to RDI, and one of them was, when I first met you and Dr. Gutstein, you had such a high expectation for the lives of the children. And it wasn’t a false high expectation, it wasn’t, I’m just saying this to make you feel better, though you like to make people feel better, but it was founded in reality and I just … my heart hurts for parents that they get told you shouldn’t maybe have some of those dreams. And I remember when my son was diagnosed, he’s 25, so 23 years ago. I’m sure a very well meaning doctor told us, “You need to focus on your daughter and put your efforts there because there’s not really a lot we can do for him.” And I guess, I can go, “Well that’s 23 years ago.” But I have to hear that parents are still getting this feedback.
Dr. Sheely: And Katherine, when I think about the children that we know who are on the spectrum, and their … actually, their wonderful parents, these parents who put so much energy into thinking about them and planning for their future. I love that we have the Parents Right Admission Preview, and the mission preview can be very hard because, just like you said, when you get the diagnoses you can also get a very bad perception of what the future might be. So when you say, “Let’s write a mission preview,” what is it that you would like to see? Parents almost … sometimes say, “I can’t go there again. I just can’t go there.” And yet, if we don’t go there we’re listening to the narrative that is not gonna get us anywhere. And so, I think because our particular narrative of let’s write a mission statement, in six months what would you like to see? Well, I would like to see Johnny meet me at the door and say, “Hey, dad can I carry your gym bag in?” That’s a great idea, that’s a great mission statement. And it doesn’t mean that we don’t have different mission statements for when a child is 21.
But just like when we’re working with our children and we say, “How do you reward yourself for the small steps?” We say to the parents, “How do you feel rewarded for the small steps, as well? Because if we’re thinking only about that big picture, like, I’m not gonna be happy until I’ve lost 20 pounds, I can’t be happy with a day where I didn’t have ice cream.
Kat Lee: Exactly.
Dr. Sheely: I’m probably happier on a day when I eat ice cream. You know what I mean?
Kat Lee: Yeah. For sure.
Dr. Sheely: I think being able to say, “Actually we have the same dreams for our children.” There’s a different road map now but we don’t have to give up our dreams is very important.
Kat Lee: I think, what you said, “We don’t have to goof up our dreams,” that statement is so chi, and to some extent we have to, I guess, emotionally inoculate parents to those voices that are telling them otherwise because those can be very loud voices, even if they’re not loud, they can be heard loud.
Dr. Sheely: I think part of that inoculation is to accept were we are. And nobody wants to hear the diagnoses, your child has autism, nobody says, “Oh, great. I’m so excited.” Nobody wants to hear that diagnoses. So we have to say, “What’s your reaction to that diagnoses? Where are you right now?” Are you trying to do everything or are you at a point were you say, okay that’s were we are, how do we move forward? And it’s very different because some people are in crisis and if we don’t recognize what that crisis looks like, gonna stay in crisis.
Kat Lee: And crisis is something that you and Dr. Gutstein have talked about so long for parents, but a lot of times they never get talked to about where are they, so they can stay there. It seems strange, I think, to people who have experienced it but they can stay there a long time.
Dr. Sheely: And we also have slogans that make it hard for us to move past that because the slogan that comes to mind is, “No stone left unturned,” and parents will say that to me, “I’m going to do everything. There will be no stone left unturned for me.” And meanwhile, they’re taking a very vulnerable child and they’re making that child more vulnerable because they’re rushing the child here, and they’re rushing the child there. And so, in RDI we say, “We slow down to speed up.” One of the things we mean, slow down, take your time, were is your child? What’s the next step and how do you move forward?
Kat Lee: Another slogan that I can remember, years ago, a parent saying to me as well, “I’m not gonna put all my eggs in one basket.”
Dr. Sheely: Yeah.
Kat Lee: And we move those eggs around too much they’re gonna crack. I mean, I understand the sentiment, but that’s kind of like the stone unturned, it’s gonna … you put the egg and the stone together and you have a mess.
Dr. Sheely: And both of those come from a place of fear. A fear of the future, a fear of whether your child is going to be a dependent, and probably unnamed fears that I’ve never thought about.
Kat Lee: Absolutely. As a parent, I understand, wanting to feel like you have researched, wanting to feel like you’ve studied, wanna feel like you’ve devoted. I think what’s hard is helping people understand that doing everything, and feeling like I gotta find everything, everything out there, puts you in a panic stage.
Dr. Sheely: And I think another part of that is coming to the realization that this is still your child, and you are still the parent, and you’re the best parent for your child. It seems a little bit unfair that your child has to deal with this but you’re still the best parent for this child that you have. You don’t have to give up your dreams, you can maybe go in a different direction to get there, but it’s still your child. And in RDI, that’s the one thing that we can’t let go, this is still your child, we’re going to help your child become a better apprentice to you.
Kat Lee: Well, for me with autism, the biggest tragedy would be if the parent lost that relationship with their child, and came to not have a feeling of that child being theirs. I think that’s truly the worst thing.
Dr. Sheely: And turned over what’s happening with the child to professionals instead of taking that child in and working on the relationship, and helping the child become a good apprentice to them. I know I’ve said that before, but the guiding relationship has to do with parents understanding that they’re in charge of helping their child’s mind develop, not somebody else. And so, it’s not just learning new things, not learning static information, but developing a flexible neurological system, so at some point the child takes on his own learning just as other children do who are not dealing with autism.
Kat Lee: And the most beautiful thing is to watch parents go from one state of feeling like, while they might not be able to put a name on it they don’t have that guiding relationship that might’ve come naturally, to seeing them fully have that guiding relationship and knowing that they’re going to have it, it’s there no.
Dr. Sheely: And it feels so different. It feels, as some parents will say, it feels more normal. And what they mean by that, is I’m not spending all of my time trying to get my child to do something. And that getting a child to do something is pretty destructive because you’re turning a child with dreams of his own, into more of a passive learner, which is, feed me the information, I’ll learn it and I’ll spit it back, which isn’t what we want. We want the children to say, “I wanted to learn about this. This is what I think I need to take on next. This is where I’m stuck.” And I’ve been in situations with pretty young children, were they have said, “This is what I need to work on.” Now most children, who are pretty young, don’t think about that or they can’t say it, but our children actually can say this because they’re more aware of who they are and the things that they need to do, to in the end, become independent as adults.
Kat Lee: You know, as you’ve been talking today, I’ve been thinking about … we started our conversation talking about being able to have high expectations, and then I’ve kind of morphed, I suppose to, being able to have expectations.
Dr. Sheely: Oh, wow.
Kat Lee: Because a lot of what we’re talking about are just expectations that you’ll parent your child, I don’t think anybody would, under a typical child, would think I’m having a high expectation to think I will parent my child. And so, we’re really talking about just typical expectations, and in that parents can have those. And they do get told that they shouldn’t think that they can, so it’s interesting how I’ve come to see what we’re talking about at this point is just what should be.
Dr. Sheely: To make a little bit of an adjustment, and that adjustment being, okay today was the day that my child did this. Today was the day my child came up and said to me or today was the day my child took out toys and played on his own in a creative way. So those kinds of things, which if your child is typically developing, you might not notice. But I have to tell you, if you ever have a child on the spectrum you notice everyone of those things with your typically developing children, and you celebrate them.
Kat Lee: Yes, absolutely. I always work in an opportunity to talk about my new granddaughter. So I notice everything, and everything seems amazing, and it is amazing. I think we’re wonderfully made. I think those little things are big and that’s what makes them so important. So I know you have a wonderful grandson, so we both are on that same page.
Dr. Sheely: Yeah. We’re about to talk about our grandchildren but we won’t.
Kat Lee: We’ll try not to veer. But it’s a beautiful thing, and I think one of the most beautiful things about the work that you and Dr. Gutstein have done, is you have given parents real hope. A hope of, as you say, and as he says, it’s something that we’re going to have to work toward, it will be a mindful guiding. It is going to be something that we’re in process on but you can get there.
Dr. Sheely: And I love it when I see children taking on their own learning, and those little shoulders go back, it’s like Bob The Builder, “Yes, I can.” “Can you do it? Yes, I can.”