55 Chapel Street, Suite 202, Newton, Ma 02458
www.nesca-newton.com
617-658-9800

75 Gilcreast Road, Suite 305, Londonderry, NH 03053
603-818-8526

NEWS & NOTES

Search This Blog

Sunday, December 22, 2013

This American Life #317, Act Two: Hit Me with Your Best Shot

From WBEZ Chicago

Originally Broadcast September 15, 2006

Listen HERE. Dave Royko talks about the decision he and his wife faced recently about his autistic son's future, and whether he should continue to live with the family. (19 minutes).

Ira Glass: It's This American Life, I'm Ira Glass. Each week on our show, of course, we choose a theme, bring you a variety of different kinds of stories on that theme. Today's show, "Unconditional Love." Stories of parents and kids and how hard love can be sometimes in daily practice.

We've arrived at Act Two of our program.

After a bunch of cases where parents of autistic children murdered their own kids, a parent named Cammie McGovern wrote an editorial in the New York Times about all the pressure that she and other parents of autistic kids feel to hear about these amazing success stories where kids end up at Brown, at Harvard. But those kinds of recoveries can't happen for every kid. That's just the nature of autism.

In mythologizing recovery she wrote, "I fear we've set an impossibly high bar that's left the parents of a half million autistic children feeling like failures."

For these parents, the regular parenting rulebook is out the window. There are all these different kinds of treatments. They worry about doing every possible thing.

Dave Royko's son was diagnosed with autism at the age of two. Things have gotten harder and harder over the years and he and his wife recently had to make a decision. They had to decide whether or not to place their son in a facility for the rest of his childhood.

Dave Royko: People say all kinds of things to me and my wife as parents of an autistic son, and they mean well.

Karen Royko: People would sometimes say to me, in public, or in therapy waiting rooms where there's a lot of interaction with parents and they would say, you're a saint. And I would just think, well, Jesus Christ. What am I supposed to do, beat the [BLEEP] out of him? What else would you do? Well, we have to take a lot of antidepressants. That helps.

Dave Royko: God bless medication. People would often say, I couldn't do what you're doing. I know when people would say that, I mean, it's really a compliment. But it would sometimes though, feel like, yes, you would. Unless you're really a [BLEEP] person and not cut out to be a parent, you would be doing the same thing. The only difference is, we have to do it. It always felt like a little whiff of this crap, like God never gives you more than you can handle.

Karen Royko: You just want to kick those people in the teeth don't you?

Dave Royko: If that sounds harsh, here's what it's like for us. On a typical day, our son Ben empties the contents of cereal boxes and egg cartons onto the floor. He opens car doors while we're driving. He walks into traffic. He throws himself up against the sliding glass door in our den. Luckily, he's never smashed through, though he has put his hand through the windows in his room.

And by the time Ben was 12, he was nearly 6 feet tall and 250 pounds. A toddler in a giant's body. He dwarfed everyone in our house but me, which is why my wife Karen's arms are covered with bruises, scratches, and scars. I've come to call the various wounds he inflicts, benjuries.

"Almost daily, we experience things that other parents would recount for the rest of their lives as their biggest parenting horror story."

Almost daily, we experience things that other parents would recount for the rest of their lives as their biggest parenting horror story. Recently, Karen found herself in a toy store with Ben. The store owner complained about Ben's behavior. He looked her right in the eye and unloaded in his pants. Which was nothing new. Crap is Ben's trump card. Useful in all sorts of situations.

Karen Royko: And so she walked over, smelled it-- it smelled horrible-- and got really mad. You know, I said, can we use your bathroom? And he wouldn't let me put on his shorts because they were wet. And so we spent probably 20 minutes in that bathroom, with me fighting him trying to get those shorts on, and him really fighting. And I'm talking about pushing me, scratching me, and trying to get out of that bathroom. And I didn't want to let him out. He had no pants on, no underwear. I'm laughing about it now, but at the time I was just beside myself. I was crying and sobbing.

And finally, after a while, I looked out at that bitchy woman was there. And she saw me and she said, you have to leave right now. Why did you bring him in here? You know, so at that point, I just directed all my anger towards her. And I said, OK, fine. We'll leave. So I just brought him out with no pants on in the store. And then, oh my God, did she ever lose it. And so what was sort of funny was Ben really still wanted to shop. He wasn't ready to leave.

Dave Royko: Ben was only nine when we got the first serious suggestion that he needed more than we could provide at home. Two of his therapists sat us down and said that we should consider placing them in a residential program. And the sooner, the better. As he continued to grow in size, it would only get harder to find a good program that would take him.

As grim as it was to imagine sending Ben away, I also found myself agreeing with them. And frankly, feeling relieved at the idea. Life had become an exhausting and sometimes frightening daily struggle to manage what was becoming unmanageable. Hearing them talk about the need for residential treatment felt like validation. That yes, things really had gotten that bad. But Karen had a very different reaction.

Karen Royko: I was just floored and shocked and appalled, and went home just got under my covers and cried all day. I mean, he's a baby. That's the thing that bothered me the most about the whole decision. I just always felt like, I can't do it to him. It's going to be just horrible for him and as much as this is horrible for us, I can't do that to him.

Dave Royko: When I realized Karen felt this way, I found myself questioning my own values as a parent. Hell, as a person. What kind of person wants to ship his kid off to an institution? And how would Karen view me for the rest of our lives together if she ever felt like I pushed her into it? So I resigned myself. I decided that if we had to get through another decade with autism before Ben reached adulthood, so be it.

And to avoid dropping dead from exhaustion and stress I'd better get in shape. I lost 90 pounds. I exercised. I was determined to get through this and come out on the other side alive and able to enjoy life again.

As a parent, you want to believe that there's a cure for everything with your child. In the world of autism, there is no shortage of treatments, only a shortage of results. We were providing Ben with as much one on one stimulation as humanly possible. And it wasn't working.

The summer before sixth grade was the toughest yet. Ben's toileting had regressed badly. He'd become increasingly aggressive. You could be sitting comfortably with Ben looking at a book or a TV show, and before you had time to react his hand would dart out and put a deep scratch into your arm. Or his elbow would land a hard blow to your chest, or smash your nose and send your glasses flying. It wasn't clear where these violent outbursts came from. Was he mad? Just trying to get a reaction? Playing? Trying to connect?

Worst of all, he would often refuse to go to sleep. Or he'd sleep and then be up for the day at 3:00 AM. The only time Ben doesn't require direct supervision is when he is asleep, which means if he's up, one of us is up. Usually Karen.

In 13 years, Karen hadn't had one night of unbroken sleep. Summers were the worst. With no school, Ben was board, which led to more tantrums and destructive behavior. It also meant no chance for Karen to grab an hour or two of sleep in the afternoon to make up for the night. It was this crushing exhaustion that finally did it.

Karen Royko: This was starting to feel like it was a fatal-- Ben's autism was becoming a fatal condition for me, personally.

I was exhausted and you can't function. And so I just couldn't do it. I was done, I couldn't do it. It was just such agony over the years taking care of Ben and there really was no one that could sort of save us, or save me, or save him from this horrible situation. There just wasn't sort of enough help, or enough money, or anything in the world to really make this tolerable year after year after year.

Dave Royko: Then Ben started doing worse in school. He was regressing. His behavior and toileting were worse than the year before.

Karen Royko: It really became clear that this is really bad for Ben. The best thing now isn't for him to have the nurturing of his mother 24/7. And I know you were ready for that to happen sooner.

Dave Royko: Yeah. Honestly, it felt nice for us to be on the same page about this for the first time. And part of it was it felt nice not having to feel like the parent who wasn't as good a parent. Because in a way, it just felt like, well, am I really not as good a person because I want to send our kid away?

Karen Royko: I never thought you weren't a good parent. You never tried to talk me into it or convince me.

Dave Royko: I never really felt it was really open for discussion. I felt it was just such a basic thing. How could I argue that Ben shouldn't be with mom and dad?

At last, we were together on this. The single biggest decision ever in the life of our family. But there was one more person in the house whose opinion mattered and that was Ben's twin brother, Jake. And we still had some convincing to do. Jake explained to my producer.

Jake: Well, the first time I heard them mention it, I thought it was just so they could have more time on their hands and I was pretty angry about that. And I told them, like stop trying to convince yourself that this is for Ben.

Dave Royko: It was a good point. Were we doing this for Ben or for ourselves? Karen and I had asked ourselves this question too. And if sending Ben away had only been for the benefit of the three of us, we wouldn't have done it. Instead of being bothered by what Jake said, I was actually touched.

Because after all he'd been through, all the plans canceled and events ruined, he'd still empathize with Ben, who could be so hard to empathize with. But even Jake's empathy had to take a backseat to the reality that it was time for Ben to go.

Do you remember what it was, where the turning point was for you when it went from feeling like we're sending him away just for our own sake verses a turning point where you really felt like it was the thing that was necessary?

Jake: That one night with the banging and the hitting and the screaming and the sobbing. And the more sobbing and the scratching and the banging and the pounding through doors. You remember it?

Dave Royko: I remembered it. It was a long, nasty tantrum late one night, where Ben lunged at me over and over with all his weight and I ended up bloodied and bruised, holding his bedroom door closed while he smashed himself against it for hours, trying to get out.

Jake: And it sounded like there was punching going on. I'm not sure if there was. I could hear every single thing that went on.

Dave Royko: What went through your mind?

Jake: Well, he's certainly not happy. If he's throwing tantrums like that he's not happy here. Not happy enough.

Dave Royko: The one thing that likely never will be resolved in all of this, the thought that wakes me up in the middle of the night is, what is Ben thinking right now? Does he know he will see us again? That we still love him?

An autistic child can't conceive of other people's subjective inner life. And that means he probably can't really wonder if we still love him. Because the idea that we feel anything at all is inconceivable to him. But he certainly can wonder why the people he loves most in the world, that he has always known, and relied upon, and trusted, have abandoned him.

In June, we drove Ben to his new life. We were extremely lucky to live near a facility that was perfect for him, an hour and a half drive from us in Wisconsin. After our meeting with staff and unloading Ben's stuff, it was time for us to go. It was quick. A long goodbye would only make things harder.

I gave Ben a big bear hug said, I'll see you soon, and headed out the door as Karen said her farewell, which I couldn't watch. Very briskly, we walked down the hall and out of the door, accompanied by the sound of Ben's wailing. It was a strange feeling to leave an unhappy Ben with strangers. The familiar urge to swoop in and try to calm Ben down and protect others from any potential behavioral shrapnel was hard to resist. We felt terrible. But at the same time, we felt liberated.

"We hadn't realized just how tense and jangled our nerves had been for 13 years. We sank into the coach and looked at each other. Karen said, this must be what it's like to be let out of prison..."

When we got home that evening, we were so calm that it felt foreign. It felt like we were on muscle relaxants. We hadn't realized just how tense and jangled our nerves had been for 13 years. We sank into the coach and looked at each other. Karen said, this must be what it's like to be let out of prison.

Jake and his friends were upstairs and Karen got the idea to take them for ice cream. My immediate reflex was, we can't do that. And then incredibly, three minutes later we were in the car getting ice cream, like we'd gone through a tunnel and came out in another universe. It was even stranger for Jake. He had never known life without autism.

Jake: 
The first couple days when he was gone I was so relaxed that I was nauseous. I was like sick to my stomach. I felt like butterflies in my stomach. You know, like what now? It's like I was pulled out from my life and put into another with a couple of people who I still know there, and they're with me, but it didn't feel like home anymore. For me, like home meant stress and it meant a 5,000 pound brother who could be dangerous at times and hog the couch.

"When weekly visits with Ben began after his first month, we immediately knew we had done the right thing. Ben was happy. In fact, it is very possible that Ben is happier than he's ever been..."

Dave Royko: When weekly visits with Ben began after his first month, we immediately knew we had done the right thing. Ben was happy. In fact, it is very possible that Ben is happier than he's ever been. His days are jammed with activities and tasks from morning until night. Every minute is scheduled. Even the downtime is structured with rules and responsibilities. That's what's Ben needs and we could never have given it to him. And for us, that's what the choice boils down to.

Karen Royko: I don't have any second thoughts. I don't feel guilty at all. I know some people trying to be nice after he went were like, oh, you must feel so guilty. Or you know, how are you? You must be doing-- just assuming that I was really doing terribly. And I was like, you know what? I really feel pretty good. I mean, I didn't even have to go to my shrink or anything. I thought for sure I would be scheduling some appointments with my therapist, but I just feel it was right.

Dave Royko: Last weekend we had our first home visit with Ben and it was a joy. Ben walked into the house and stared momentarily at things that had changed, like the new couch in the living room. Soon we were in the backyard and he swung on the bench swing for two hours, as happy and relaxed as I have ever seen him. He spent the rest of the day with us and when it was time to m Ben and I got in the car and headed back to his new home.

A half hour into our drive Ben said, the letter D. That was my cue to say, and D is for? Ben countered with D is for dump truck. And he said, D is for daddy. I glanced in the rearview mirror and Ben was looking right at me, a rarity, and smiling. I reached back and patting his leg said, that's right, Ben. D is for daddy, and daddy loves you so much. He beamed and choking back tears I said, you'll always have daddy.

It's very possible Ben was oblivious to the meanings I was laying on our conversation. But I swear, it felt to me like we were on exactly the same page.

Ira Glass: Dave Royko, he's a psychologist in Chicago.

No comments:

Post a Comment