It strikes me that we talk a lot about the vulnerabilities of the children, which we should but a lot of times the vulnerabilities of the parents or the family are not really talked about.
For all of us who have had a child diagnosed with autism, we know that they aren’t the only person who is vulnerable in what’s going on.
in the end, relationships can really end up wounded because the vulnerabilities weren’t recognized for what they were in that relationship. There has to be a balance in all facets of our lives after a diagnosis.
Kat Lee: Welcome back to ASD: A New Perspective, the podcast show where we help you understand what is going on in the mind of your child, and we encourage you that growth for your child is possible. I’m Kat Lee, and in this week’s podcast, Dr. Sheely talks to us about helping parents with vulnerable children find balance. Let’s listen in.
Kat Lee: I was thinking about parents I’ve talked to over the years, and one conversation, you kind of go back over visits and wonderful visits you had, but one conversation I had once with a dad that he wanted to talk to me about how having a child go through the process of a diagnosis and having he and his lovely spouse go through the process of talking about and deciding what the vulnerabilities were and what to do for their child, and just all of that had just taken over their life. And his question to me, which I love, which I have a feeling a lot of people have, parents, is he said, “Kat, does autism have to be in all of our life? We’re driving on a date, and I look over and my wonderful wife is looking at a video you sent.” [chuckle] “Of you,” he said, “That you sent her of you,” and I’m thinking, “Well, it can’t be all that bad.” [chuckle]
Kat Lee: But his point was so important, he was really asking an important question, and I think he felt very overwhelmed. So for our chat I actually looked up the word “overwhelmed” and it was like “beaten down, trounced upon”, I didn’t think it was gonna be that dramatic synonyms for “overwhelmed”. But I do… All-consuming. I do think that in some ways parents do feel that way at times. What is your experience?
Dr. Rachelle Sheely: I had the same experience. And I’ve had parents who are actually relieved to get the diagnosis, because they knew there was something going on, and everybody was telling them, “He’s fine, just like you when you were little.” or “Look at… Look at Bill Gates… ” Whatever. And so those parents are kind of relieved to say, “Okay, I wasn’t crazy, something was going on.” But there’s another group of parents who had no idea, no idea they were dealing with autism, and this is even recently. Now, a long time ago it wasn’t very well known, now it’s well known, but there are still parents when they’ll say, “We’re looking at autism,” and they look at this beautiful child they have thinking, “What?” And so they’re traumatized, they’re immediately traumatized and they’re terrified. And once the trauma and the terror join hands the parents are on a road that is taking them in a place that it would be best that they not go.
Dr. Rachelle Sheely: And what I mean by that is they become consumed by “What does autism mean?” They wanna know everything about it. They also want to do everything, and they wanna do everything, whether it’s speech, which the child may or may not need, or whether it’s swimming with the dolphins, or whether it’s some kind of a diet, a gluten-free diet. So they’re going to leave no stone unturned, and they’re always looking for more stones, because they wanna make sure that they’re doing everything they can do, so they are obsessed. And the idea is that more is better. And any time you’re not thinking about autism, any time they’re not looking something up or talking to someone whose child has autism or another profession, they feel like they’re not giving their child everything the child needs. And it’s a terrible situation to be in.
Kat Lee: And I can see how it does become like that Dad said, part of his date, which was hard-fought for anyway, to have that day with his lovely wife, but the other side of that is getting into a conversation with your partner where they feel like they’ve got to do this, they’ve got to be studying, even in the car as they’re going out to dinner. I think that’s just very challenging for our parents and for each partner to know how to deal with each other.
Dr. Rachelle Sheely: And sometimes there’s a… There’s kind of a role, a role that one parent takes on and the other parent is free of that role, and they leave it up to the parent who’s taking it on. It could be the mother or the father, but the role is, “I’m gonna be the person who deals with the autism and you’re gonna be the person who makes money, so we’re gonna split this up right now.” And the parent who is dealing with autism just feels, “This is my life’s work, this is what’s on my plate right now, and it’s all I can do.”
Dr. Rachelle Sheely: Then the other parent feels really incompetent because he or she doesn’t know what to do with the child and they’ll say, “Well, my wife does that, my wife knows about it, my wife’s in charge,” or, “My husband is in charge, he knows about it.” And then you have a split in the family, a split in the parents, and if there are other children, sometimes there’s a split in the family where one parent aligns with the child who has autism and autism is all that parent thinks about, including not thinking about the needs of the other children, the parents’ own needs, or as a couple, what the couple is going to do to have a good marriage.
Kat Lee: It strikes me that we talk a lot about the vulnerabilities of the children, which we should, or what vulnerabilities we need to be addressing, but a lot of times the vulnerabilities of the parents or the family are not really talked about, that the child isn’t the only person who is vulnerable in what’s going on. And I think relationships can really end up wounded because the vulnerabilities weren’t recognized for what they were in that relationship.
Dr. Rachelle Sheely: I think they can too. And for parents who are dealing with autism, depending on what they decide to do, they may think that “In a couple of years everything’s gonna be fine, so I’m gonna put all of my energy into this, and then in two years we’ll have… ” whatever. Whatever they think that is. And while I see many adults with autism who are doing really well and they’ve achieved everything they wanna achieve and everything we want for any of our children, they would still tell you, “I have autism.” And the need to say that, the need to understand it, helps them really get through the day and understand that when some things go wrong it’s not their making, they haven’t done anything, but it’s that they have a different kind of brain, and they’re thinking about it or doing something differently.
Dr. Rachelle Sheely: So when parents realize finally, “This isn’t going away”, then it seems like, “Well, I can make it go away,” and so what kicks in is, “I’m going to do this, I’m going to do that, I just read in an article that said… ” or “My neighbor told me about… ” or, “My mother-in-law said if you would be stricter or, and set limits, if you would spank your child, or… ” I’m exaggerating a little bit here, but then they start listening. And there are all of these voices, not only voices inside their own heads but the voices from outside which are advising them, sometimes good advice actually, and sometimes the worst possible thing they could do. But they keep going forward with more and more and more.
Kat Lee: I love what you said about the voices, because it took me back to the imagery of the date and the lovely spouse in the car watching an autism video, that really what was going on there were voices in her head saying, “You can’t stop, you can’t take a break, you can’t even enjoy this date, you feel guilty if you enjoy this date.” And I really didn’t think of it as those voices were in the background, either subtly or loudly, talking to her, that that’s really, really important.
Dr. Rachelle Sheely: Well we all have voices. You have voices in the back of your mind and I have voices in the back of my mind, and depending on where those voices come from or what they’ve said to us, we can react in a way where we feel competent or we may doubt everything we do. And so we’re not only bringing to the table who we are, but we’re bringing to the table the voices from our own childhood and trying to figure all of that out in the middle of a crisis is very difficult to do.
Kat Lee: I remember so many years ago talking to a friend of mine, a parent, and she was a pretty big information sharer, and I would say eating of information, she just loved to have lots and lots of information, and she would tell me about being up at 2:00 in the morning, 3:00 in the morning. As you know, in my prior life, I was in radio and I might have to get up at 4:00, be in the station at 5:00, I could be out till 11:00 with a promotion, didn’t get a lot of sleep. Well, I’d been down that road of that kind of consuming activity, so I had set a boundary early on after what went on with our son, that I was gonna close it all down at 9 o’clock. And it could have been earlier or whatever, but for me, close it down at 9 o’clock, get into preparedness for relax, sleep, etcetera. And I knew that was healthy, but I could not convince her that that was healthy. And in fact, I think she thought, “Mmm, no you should be staying up longer,” not in a mean, in a kind way, but that we just have to do this, we can’t sleep, we can’t rest. How do parents find balance? How do they do that? What is the balance?
Dr. Rachelle Sheely: Well, I think that parents find balance. Sometimes they… I think parents find balance in different ways. And we of course want them to find balance, not just throw up their hands and say, “I’ve done everything, that’s it,” or, “I’m going to do more,” but the balance really means that you pull together what is working and what isn’t working. And I have found that when I can begin to show parents and help them see that their child is beginning to take on his own learning, and that might happen very quickly, but when I can help them do that they say, “Okay, this is something we can do, we can move forward as a family.”
Dr. Rachelle Sheely: I think it’s also important that whoever parents are working with, keeps reinforcing to them, “This is still your child, it’s a child you had before you got the diagnosis, it’s still your child. Did you love your child then? Of course you did. Do you love your child now? Yes. We’re going to give you some skills. We’re going to help you help your child be a better apprentice to you.” And all of these other things you have to ask yourself “Is this going to get your child toward independence as an adult?” And so I keep going back to what we’re looking for with people who are independent as adults who have autism, and I keep having parents answer that question for themselves. And a lot of times that helps them calm down, because now they’re looking at what they’re doing within a very focused, positive, encouraged light.
Kat Lee: I think that it’s important that families understand that for their child to be healthy and become independent, they have to be healthy. And not only that, but it’s okay. It’s okay for them to enjoy… You hear sometimes that people will have things happen and they’ll say, “I feel like if I’m happy or I have enjoyment, I’m not recognizing this challenging thing, I’m not thinking of my child right now, and I need to be thinking about them all the time. If I’m enjoying a movie, mindless movie or whatever.” And I think the truth is that that’s so healthy to do, and yet it’s so hard to accomplish.
Dr. Rachelle Sheely: There’s also a staging that happens with typical development, and you wouldn’t expect an 18-month-old to be having a conversation with you. You wouldn’t be expecting that kind of language. And yet for our children who are developmentally on a different trajectory, sometimes when we try to superimpose on them things that they’re actually not ready for. And if we can help parents understand that development is development, there are things that happen first, and there are things that happen second, and then there are all those things that happen simultaneously, and sometimes we don’t know how they happen but they do happen. But there’s a structure to this, and the structure has been documented by lots of developmental psychologists, and for parents who have other children they’ve also seen this. So we’d like to say that we’re not inventing anything new. There is a perfect plan in place for children and parents, we’re trying to observe it and we’re trying to replicate it in bits and pieces in a sequential way that makes sense for the child.
Kat Lee: Thanks for joining us for this special edition of ASD: A New Perspective, the podcast show where we help you understand what is going on in the mind of your child. And we do encourage you that growth for your child is possible. I’m Kat Lee, see you next time.