Thursday, October 23, 2014

Dr. Jonine Biesman: Avoiding Crises Through Respectful Parenting

Photo of Dr. Biesman from theAAPN.org
[Image description: Woman w/beige skin,
long curly dark hair, & brown eyes,
smiling widely, directly at the camera.]
Dr. Jonine Biesman specializes in working with neurodiverse children and adolescents, as well as with their parents and larger family system. She is a training leader and interventionist in DIR/Floortime.

We talked with Dr. Biesman about best practices for parents who need help understanding and parenting kids with aggressive or self-injurious behaviors, about presuming competence in children who need communication support, and about the potentially dangerous costs of parent-enforced compliance. Here's what she had to say:

[Best practices] doesn’t just apply to autism. With any child, whatever age, whatever person, who’s having a hard time, the first step really is understanding. What is that behavior really representing, what is it a manifestation of, and what’s really being communicated. As soon as anyone’s needs are better met, then the function of such strong behavior isn’t needed.

I think that if parents are having a hard time understanding what’s behind a behavior, therapeutic help can be valuable — because somebody can sit down with parents, help regulate the parents, and go over reasons why [the child] may be having that reaction. It could be any number of reasons — sometimes people are simply sleep deprived, and prone to being more irritable and on-edge. Sometimes they are feeling very overloaded by the sensory environment. It could be something that’s accumulating, something that’s happening at school, for example a peer conflict or a mismatch between a teacher and the student.

Oftentimes, people will internalize their feelings until they escalate and get more intense. And sometimes children, adolescents, or young adults don’t themselves have a sense of why they’re feeling overwhelmed. And once someone’s angry and out of control, it’s hard for any of us to bring them out of that extreme of an episode. So the best work we can do is on the front end: really trying to read cues, and read signs.

If our children are trying to communicate something, there’s value in stopping and listening, rather than jumping in all the time with “that wasn’t right,” and going to a place of “well that broke a rule, and there needs to be consequences.” Instead, stop and listen, ask “what’s on your mind?” and ask “what can I help you with?” Say “I’m listening and I want to hear what you have to say,” and then just say nothing. Sometimes the fewer words from the parents, the better.

I get that not everyone on the spectrum has access to that kind of language, but whatever kind of communication system is in place, it's important to give the time for the person who's upset to share. A good resource in this area is Dan Siegel’s new book No Drama Discipline. It has a lot of what I think what parents really need, which are hands-on tools. In the back of the book there are 20 things maybe not to do when your child is misbehaving, and alternatives.

I think when you’re working through the relationship, you always want to be thinking about ways you can help. There are ways you can choose your words that won’t escalate a situation further. A lot of people get angrier when consequences are put forth, or when you’re trying to preach versus just explain something in a calm way. And when our children are very agitated or irritated, or aren’t able to access their cognitive capacities to problem solve, we want to be very calm.

We can choose our words carefully, and not overwhelm with too many words. Whenever you have something you want to impart to your child, there’s always a way to say it positively. For example, when a child has a hard time transitioning and shifting, and moving on to the next thing, you can always move into that kind of situation in the role of a helper.

It’s about saying “yes” with conditions, rather than always saying “no.” Framing in a way that is not threatening to a child, finding a way to let them know they’re going to get what they want, but first they might have to do X,Y, and Z -- and then they’ll be able to get back to what’s really important to them.

Crisis situations are tough, especially when a kid is self-injurious or is in the midst of an aggressive episode. You always want to try to understand the function of a behavior; if a child is self-injuring it may be because they are in a great amount of pain, to the point where they feel numb, dissociated, and disconnected, and self-injury makes them actually feel something. There’s always a function. But do we want someone to continue to injure themselves, to bang their head against a wall? No. You can always say, “I want to help you, and a pillow might feel better. If you really need to feel something right now, let’s try this.”

When it comes to something like sibling interactions, or a parent and child dyad, and there is violence in that dyad — you can always start from day one, impressing on your child what your family values are, letting them know “we are not an aggressive family.” They need to know they have other options. Engage the child, have them come up with ideas for some of those other options. Make sure they’re part of that problem-solving process. You can also talk about another value in your family being forgiveness.

And model for your child! We’re always going to have reactions that we regret. We’re going to have times when we’ve overreacted, or didn’t take a moment to listen, or we thought to ourselves afterwards, “wow, I could have handled that better.” We can take those moments, and we can talk about those moments, and we can repair. We can say, “I’m sorry that I used a loud voice, I never want to be scary,” or “I love you guys so much, I don’t want to yell at you guys, that’s not what I want to do.”

Then it’s about having family meetings about how you all want to be interacting with each other. And it’s always OK to go back when you aren’t so heated, and sit down with your kid, and say “You know, I’ve been thinking about this, and I could have done this, and let’s do it this way.” You can go back on ultimatums. Because parents will say irrational things in the heat of the moment. So you have to be aware that a multitude of such things piling up can create harm, can create a break in the relationship. You always have to be working on the parent-child relationship, like any relationship.

You have to nurture relationships. You have to give them time. You have to make sure there are plenty of loving, bonding, connected moments. When you have that as a foundation, there’s more room for mistakes to be made on the child’s part and the parent’s part, and you can get past “transgressions.”

Children with communication challenges often understand more than people think they can, of course. And certainly someone can pick up on a softer tone of voice versus a harsh tone of voice. Human understanding and touch and hugs and rubs on the back — we’re pretty innately wired for reading those cues. I would venture to say that any kid with autism would be able to pick up on some of those subtle human kinds of feelings, and distinguish between something scary and something pleasant.

What’s so amazing about the work that Siegel does, is he asks parents address the ghosts in their own closets first, and understand why they’re making their parenting choices. Because we all have our own histories, and our own exposure to our own parents. Examining that, in terms of the choices that we’re making, is really important. Looking inside ourselves first.

As a developmental interventionist, I’m not a huge fan of the term ‘compliance.’ Realistically, compliance is a necessary part of life in some ways. We need to listen to our parents, we need to be cooperative. But ‘cooperation’ has a very different tone than ‘compliance.’ If we try to force our kids into compliance, it’s almost like we’re trying to make them trained animals, in a zoo. And they’re human beings.

So instead of compliance, why don’t we think about how we can work cooperatively, together, and absolutely listen to not only your child’s cues, and what your child is saying. It’s really important, because sometimes your child is not only giving very strong messages, but is trying very hard to tell their parents what’s going to work for them and what’s not going to work for them -- and ignoring those cues can have some very dire consequences.

You need to listen to your kids, you need to listen to yourself, and you need to ask yourself why compliance is so important to you. Or is there another way to look at the situation, or think about it.

Monday, October 20, 2014

Disability: Considering Insider vs. Outsider Perspectives

Amanda Forest Vivian
adeepercountry.blogspot.com

This post was originally included in our 2011 Dialogues series. But we think it deserves separate attention, and are republishing it with the author's permission. 


----

This is just a theory, so be gentle. But I think a lot of problems between non-disabled people and disabled people might have to do with the fact that for most born-disabled people, their disability is ego-syntonic (integrated with their self-image).

One!

Ego-dystonic is an psych term for an aspect of a person that doesn’t fit their self-image. For example, if someone lost their legs in an accident, they would probably wake up the next day and see a body that didn’t seem to them like their real body. On the other hand, if someone is born without legs their disability is usually ego-syntonic, so they feel as attached to their body as anyone else.  They don’t feel the same distress that the first person might.

Two!

It’s hard for anyone to put themselves so completely in another person’s shoes that they can relate to not only their day-to-day experiences but what it would be like to be attached to those experiences because they are yours. Also, we don’t live in a society that encourages non-disabled people to understand this.

One symptom of this problem is disability simulations. The conventional disability simulation consists of a person who can walk trying to get around in a wheelchair, or a person who can see wearing a blindfold. These simulations are criticized because they don’t really simulate disability. A person can come away with a feeling like, “It would be horrible to be blind,” because as someone who is used to being sighted, they found blindness to be much more scary, overwhelming, and unnatural than an actual blind person does. An hour-long disability doesn’t resemble a real disability any more than the lack of disability does.

I think you can see the same issue in mainstream fiction, written mostly by non-disabled people, that features disabled characters. Disabled fictional characters often seem to have an acquired disability, a fairly recent one. They remember being non-disabled, and it’s taken as a given that a non-disabled version of them is their “real” self, and they want to be that person again. The most obvious example I can think of is the movie Avatar, in which a guy finds it less ego-dystonic to be a ten-foot-tall blue alien than to be paraplegic.

When I say this is not a realistic portrayal of how most people feel about their disabilities, I’m not trying to claim that being disabled is super fun or that it wouldn’t objectively be easier to be non-disabled (that’s the definition of disability). But I am trying to say that disability feels very different to disabled and non-disabled people.

Obviously many non-disabled people don’t have the same kind of distress reaction to disability that I’m describing, and some disabled people do. But I think it’s a significant enough trend that it amounts to a kind of culture shock.

Three!

Many non-disabled people who are having kids have formed not only a personal self-image that is non-disabled, but a family self-image that doesn’t contain any disabled kids. Then if they have a kid who is disabled, they feel that they lost something.

When you think about it, this means the kid is growing up in a situation where they and their parents are having a massively different experience of the kid’s life. To the parent, certain facts about the kid’s life equal a loss, but from the kid’s perspective nothing has been lost and these are just facts.

This difference in perspective can lead to some practical problems. Kids tend to be shortsighted. If a kid really loves sitting around making moaning noises, probably their entire thought process about this is, “I found something fun to do. Awesome.”

A parent by definition is thinking something more complicated. “I’m glad that my kid has such an easy way to get into a good mood. But, no one in our house can even read a book because this is so loud, and I’m also worried that my kid isn’t putting much time into learning to do new things.”

Or the kid is having trouble learning to read, gets stressed, and decides it would be better to watch movies instead. Whereas the parent knows that learning to read is important, and shouldn’t be given up so quickly just because it seems hard.

There has to be this difference in perspective between parents and kids -- whether or not the kid is disabled -- because it’s normal for parents to be pushing their kids to learn and do new things.  Ideally, as the kid grows up they will come closer to the parent’s perspective, and become an adult who’s motivated to not just go for instant gratification but to attempt new and challenging things.

Four!

The problem is that when a parent is experiencing a kid’s disability as a loss, the gap between the kid’s and the parent’s perspective can get so huge as to be insurmountable. If a kid’s moaning is heartbreaking to the parent because it’s a sign of disability, and the kid thinks moaning is the coolest thing ever, these are two people who have almost nothing in common.

The kid’s behavior feels like an attack to the parent. Doesn’t the kid understand that learning to read would be a way of moving away from this really bad fact of being disabled, which has caused everyone so much sadness? The parent’s behavior feels like an attack to the kid. If the parent is so personally hurt by the kid trying to do something they love, does that mean they don’t care if the kid is happy?

In this situation, there is a built-in distance and I think the distance can get bigger the closer the parent and child are. If the parent is attentive enough that they know every single thing that is challenging or different about the child’s life, and every one of those things cuts like a knife ... well, I don’t exactly know how to put this into words, but for me it’s like the closer my parents get to the details of my experience, the less me there is, if you know what I mean. They start giving off a sadness that isn’t how I feel, but is so bottomless that it has the effect of terrifying and overwhelming my actual feelings, which are not that existential.

I often feel like the best way to keep my parents on the same page emotionally as I am is to keep things from them. Actually now that I write this down it sounds really stupid and dangerous, but I guess my reasoning process is that I am always a little worried about myself, and if my parents don’t know much about what’s going on, they are a little worried about me too. That keeps us all the same and we can relate to each other. If they found out some of the things I’m worried about, they would be ten times as worried as I am, and maybe this is true of most parents regardless of anyone’s disability status. But it is something I think about when people talk about being their kid’s voice.

Five!

When I was a kid, I liked to sneak around my parents’ room and read all their books about kids.  Some of them were about kids in general and some were about kids with autism and learning disabilities. One had a title that I think was supposed to be encouraging: “How Your Child *IS* Smart.” My parents didn’t really like me reading these books so I had to keep it on the down low, but when I was thirteen I discovered a book about Indigo Children. I couldn’t help but ask them why they had it.

My dad looked at me and said really solemnly, “We’ll try anything to help you.”

Soon after, I had an experience that I remember really well. Our dog died, and the next day my parents and I went out to dinner. When we got home and were getting out of the car, I got hit with an almost physical guilt about being an only child. Now that the dog was gone, there were no extra parts in the family unit that could distract my parents from what was wrong with me. It seemed so horrible, just them, me, and the Sadness.

As I got older I started to resent what my dad had said about the Indigo Children book. “We’ll try anything to help” -- what was I, a serial murderer? I was just a kid who people didn’t much like having around. This was most viciously obvious when I was at school, and I was the one who had to be there, not my parents  I felt like if anyone had the right to be desperately concerned about the situation, it was me. But I wasn’t as concerned as they were.

I recently asked my dad why he said that, and it turned out that he doesn’t think I am a serial murderer, but was just try to say something positive. A psychologist had actually advised my dad that this was the right thing to say if I asked why my parents had so many books or why I went to so many doctors. Which is actually where I’m going with whatever section of the post this is.

It might seem like saying “we’ll do anything to help you” or “we tried everything” would make a kid feel like you really adore them, but this can actually make someone feel horrible. If you’ve always been disabled, disability doesn’t really feel like an emergency, nor does it really feel separable from who you are. So it can just feel like, if someone would be desperate enough to try everything you must be sort of a disaster as a human.

Six!

I really love this interview with Norman Kunc, an advocate who has cerebral palsy: www.normemma.com/articles/arstairs.htm  He’s thirty years older than me, but when he talks about how his childhood made him “declare war on his own body,” that couldn’t be more familiar. I don’t have a mobility disability, but autism can also live pretty unmistakably in the body, which is why I used to only want to meet people when I was sitting down.

Kunc came to this big realization when he was in university: “I had the right to be disabled.” This line has stuck in my head, both because I find it incredibly moving and because I know that a lot of people would find it about as bizarre as saying, “I have the right to have a headache.” Wow, great, a headache! Where can I sign up?

But I already am disabled, so it is a right I want. If I don’t have the right to be disabled, it means I have to function like I’m not disabled which I can’t do. Or I have to try to function like I’m not disabled to the greatest extent of my powers, but that isn’t what I want to put all my life force into. I want to be disabled because then I can have a real life.

I feel really nervous when I hear that a kid with autism has “lost the diagnosis” because they stopped having stereotypical traits of autism that people could see. Because to me it means that the kid has done and is continuing to do all this work, but they’ve lost the word that would explain that they’re doing a lot of work. Instead they’re just a normal kid who is really tired and sometimes has to keep this secret stash of movement and feeling because it doesn’t fit the person they’re supposed to be.

Seven!

To get back to the culture shock I was talking about, I think that some non-disabled people don’t understand disabled people having these kinds of feelings, because it’s hard to understand that disability is sort of in us, and not just something that happens. Which to make my way back around to my point is why someone might think it is comforting to tell a disabled kid, “We’ll try anything to help you,” but actually make the kid feel like some kind of natural disaster.

It also explains why some other “nice things to say to a disabled person” get lost in translation -- for example, “No, you’re so smart!” if a disabled person describes a problem, or the classic, “You’re not really disabled, you just have trouble with [area of impairment].” Or when I say I’m disabled and the person says, “Aww! Don’t put yourself down!”

My idea isn’t to chew out people who use these phrases because I know it is meant nicely on their end, but I wish they would stop. I want to be disabled, or at least, since I am disabled, I want to be.

Eight!

Because disability seems so familiar and, well, basically, good to me, sometimes I don’t feel comfortable with efforts to get rid of disabilities. I don’t want to say I am anti-cure, but I wouldn’t want to live there. I know a lot of awesome people with disabilities, and if they didn’t have disabilities their life experiences and personalities would be different. They might still be an awesome person, but not the same particular one.

I don’t suppose a cured kid would be upset about being different from how they would have been, because that version of them never existed. It’s just as biased for me to want some people to have disabilities as it is to think that no one should have disabilities. I don’t think that it is perverse for me to feel the way I do, though, but I know some non-disabled people think it is perverse.

Nine!

Do you think it’s just an interesting exercise, or might some of these ideas begin to explain a problem you’ve had with someone of a different disability status?