When you have a child diagnosed with autism, the recommended therapies can take up a lot of time, often leaving the parent feeling isolated from their child’s treatments.
Do you feel like you are involved in your child’s therapy? Do you want to be?
Is a parent even important for the long-term growth of a child with autism?
Dr. Rachelle Sheely, co-founder of RDIconnect, talks about the important role that parents play in remediation.
Kat Lee: I am continually hearing from families that the interventions they’re getting involved with are not involving them as parents, and that in fact they’re being encouraged not to be involved. And from my perspective as a parent as much as for my consultant, really more as a parent I think, it is very disturbing to me because I know that our son would not be where he is if Brian and I had not been so involved in what he was doing since he was little bitty. And so I wanted to talk today about why parents are the best guides. Which for you and I, you certainly, who’ve been in RDI so long, it just seems like, of course parents are the best guides, the main guides, et cetera. But I’m afraid that that is not something parents are hearing, Dr. Sheely.
Dr. Sheely: I think you’re right about that, and it’s very surprising and frustrating and sad for me that the approach to dealing with autism has excluded the parents. And the reason it’s so important to include the parents is for one thing, we want a sense of normalcy in what happens in the families that we deal with. If the parents don’t recapture that guiding relationship, what we’ll see is we’ll see children who do well with a therapist and a reward. But within the family life, they don’t do that well, and so the normalcy can never exist in a family. Parents are always going to feel they have a child that they have to treat in a special way, that they have to do what the therapists recommend.
Dr. Sheely: In RDI, we really believe in parents and we also believe that there is a developmental structure inherent in the way children are raised worldwide. And that just because that’s difficult for parents who have a child on the spectrum, it doesn’t mean it’s impossible. And in fact, we see that pretty quickly, once parents are given the tools they need, they can help their child be a better apprentice to them.
Dr. Sheely: And so that’s exactly what happens in typical development. The parents intuitively have the tools they need to have their child become a better apprentice to them, and that’s kind of the lifelong trajectory we’re all on. It’s important to honor that. It’s important to honor development and it’s important to honor the family. And if you don’t do that, you’re probably going to create more problems than you resolved.
Kat Lee: What a tremendous loss for parents and what a tremendous loss for the children, for the babies, when this is not restored to them. As you’re speaking, that’s what I’m thinking of.
Dr. Sheely: Mm-hmm (affirmative). Yeah, it is. And I really feel that the longer you wait to reestablish that guiding relationship, which was lost through nobody’s fault… The child didn’t want to lose it, the parents didn’t want to lose it. The longer it takes to restore that, the more difficult it is. Not because of the autism, but because of the things that co-occur. And those things once they start co-occurring, take on a life of their own. So it’s really important that as soon as you start working with the family, which has autism in its picture, that you begin to restore that guiding relationship.
Kat Lee: What do you say to parents… And I know, goodness, you’ve spoken to so many parents. But what do you say to parents who say, “That just doesn’t seem like it’s my role or I’ve been told that I’m part of the problem?”
Dr. Sheely: Mm-hmm (affirmative). Well, first of all, I know that they didn’t hear that from us. And I know that somewhere within them, their hearts are breaking because they have this beautiful child that they don’t know how to guide and isn’t allowing them to guide him or her. So I actually talk to them about it. I asked them to tell me about a person in their family who was important to them, who taught them to do something. Who did they spend time with? And every now and then a parent will say, “I can’t think of anybody.” I’ll say, “Well, try. Let’s, let’s give it a few minutes.”
Dr. Sheely: And then this wonderful expression comes over their face. They’ll say, “I remember when I used to go to my grandmother’s house. She taught me how to make biscuits or sew,” or something like that. And it’s usually something very mundane and common. And once they start talking about that, you can see that it was not only the skill that was taught them, but that it was taught with such love, and that they felt loved and they felt important when that happened. So once they’ve told the story, I say, “You wouldn’t want to deprive your child of that.”
Kat Lee: And I always say, “You don’t want to deprive yourself of that.” We’ve talked so much about the loss of infants in losing their parents, but the loss for the parents too. Often say, “You deserve it,” to the parents. “You deserve to have that relationship with your children.”
Dr. Sheely: And if there are other children in the family, they know what we’re talking about. It’s only because autism makes all of us feel so incompetent. It’s like, “What do we do?” I’ve been doing it for years and I’ve probably seen thousands of children, but I always still wonder the first time I see a child, will I know what to do? Will I know how to connect?
Dr. Sheely: And so having someone reinforce that, someone who’s wearing a white coat or someone who seems to speak with authority say that to you, it’s like, “Well, I know that’s true because that’s the way I feel.” What we’re saying is, “We have hope for you and we have hope for your child. We don’t know your child’s potential, but we can help you get there and you can help your child get there. And we’re working ourselves out of a job, not into a job.” My favorite saying.
Kat Lee: Yes, which I love, which I never get tired of hearing. I love that saying. Well, I think too, and you’ve already mentioned this; but, it’s the noises or the voices or if we want to call them than noisy voices, can be really loud to parents. Let somebody else take care of this. You don’t know how.
Dr. Sheely: They can be loud. And unfortunately, I think those voices often began with the diagnosis. So they’re called in, they’re told this devastating news that their child has autism. Nobody wants to hear that. So they’re told that, and then the person says, “This is what I want you to do.” And they’re sitting behind a desk and they have lots of degrees behind their head. “This is what I want you to do and I want you to start at right now.”
Dr. Sheely: Katherine, I think that’s one reason the mission statements become so important. Because when they hear those words, “We’re going to have people come into your house and they’re going to take care of it for you. Don’t worry about it.” When those things come about, it’s really important that parents get their dream back. When we’re carrying our babies, we have dreams for those children. Autism robs parents of the dream. So if we can say to them, “Look, we’re going to ask you to write a mission statement. Something you would like to see happen in six months. Don’t use any jargon.”
Dr. Sheely: And then they say, “I would like to see Johnny run out to me when I come home and say, ‘I’ll take it, Daddy,’ and he carries my gym bag in.” That doesn’t seem like a big thing to many people, but it really is pivotal if you have a child on the spectrum to think that your child might do that. And so some parents find that very difficult because they say, “I can’t allow myself to dream again. It’s too hard.”
Dr. Sheely: I say, “Well, when you’re ready, you’ll write a mission statement.” But that’s why the mission statements are so important because it restores in the parent the idea that they can still have a dream for their child and it’s their specific dream, not somebody else’s.
Kat Lee: All right. I think that’s so beautiful and so wise that you point out that it’s a dream stealer, basically. And unfortunately, well-meaning professionals can contribute to the dream stealing.
Dr. Sheely: Yeah, they can. It’s very sad to see that. And we see a variety of parents, and when they can’t allow themselves to dream… And a lot of times that’s because maybe the child has some co-occurring things that will need to be addressed. And they can’t allow themselves to dream, it’s very important that you take the time you need to restore that. And that the things you do with them are small things where they begin to feel comfortable with their children.