By David Royko
In our pre-autism days, before the boys turned two, we took them to a kids concert. When the music began blasting from the stage, Ben and his twin brother Jake, who had been happily toddling through the aisles, each bolted for a parent. Karen scooped up Jake, and as soon as I picked up Ben, he pressed himself into my shoulder like a cuddly refrigerator magnet, my hand on his back, his hands grasping me tightly in terror. Before the second song ended, Jake was back on the ground, but Ben had not budged, his face burrowed into the warm, soft spot where my neck meets my shoulder. When the third song ended, I pulled Ben back a bit, to see if he still seemed scared.
That’s how I learned about one of Ben’s defenses: If the situation is too much to take, if he feels overwhelmed, its lights out. And in the face of this sonic onslaught, Ben had fallen sound asleep.
Nearly a dozen years later, this memory rushed in as Jeromi, Ben’s Unit Supervisor, told us that Ben had fallen asleep early, before eight o’clock, on this, the first night of his “new life” at the Oconomowoc Developmental Training Center.
The weekend before Ben’s move had been, amazingly, one of the best we can remember. Amazing, because the previous three months--since the meeting where the school district had agreed with us that Ben needed a residential educational program--seemed to bring daily reminders why Ben needed to go to the ODTC. If we were religious folks, we’d be saying that God was helping us accept our decision by making life with Ben’s autism more impossible by the day. (If we were religious folks, we would have asked, long ago, why Ben had to be autistic in the first place.) His non-compliance--regarding toileting and other behaviors--was becoming routine with everyone but Daddy, the only member of Ben’s circle bigger, and stronger, than Ben, and Ben seemed to know it.
At the same time, the days and weeks leading up to Ben’s move had a surreal quality to them, swinging from, “We can’t make it another day with Ben at home,” to, “We can’t bear the thought of sending him away.” Even though Ben’s autism seemed determined to help us to accept our decision, emotionally, it felt a bit like we were ticking off the days to an execution. When he was being “difficult,” it was helpful to have a firm date approaching when his autism would be managed and treated by someone else. But, especially when Ben was happy, I always felt a huge wave of guilt for what was coming, for what was going to happen to him, for what he would soon be going through.
Karen was busy during Ben’s last weekend at home, getting his stuff ready (and there was A LOT of stuff) for the move, so Ben had almost uninterrupted “Daddy time” Saturday, Sunday and Monday. The high points of the weekend were a couple of nice, long, family swims that we took in Round Lake, courtesy of a good friend (and Ben’s lawyer) who lives on the lake. Round Lake is extremely shallow, so we could spend hours in water that never goes above my waist. Ben was so happy and relaxed, and interactive, that we decided Round Lake is his single favorite place in the world.
The low point of the weekend, for me anyway, was breaking the news to Ben about his impending move. We did this Sunday morning via a “social story,” something we use to help explain major events or plans to Ben. It takes the form of a short book of 8x10 sheets with simple sentences (one per page) and pictures, laminated and bound with three metal rings (in other words, durable!).
The “cover” says “Ben Royko and the ODTC.”
Page 1: On Tuesday, Ben will got to a New School! [Picture of the front door of the ODTC.]
Page 2: The School is called the O-D-T-C. [Another picture of the front door of the ODTC.]
Page 3: The ODTC is in Wisconsin. [Blank map of Wisconsin with a red dot where Oconomowoc is, and below that, a photo of the “Wisconsin Welcomes You” sign you see at the border, which Ben recognizes from the many long drives we’ve taken.]
Page 4: Ben will have New Teachers at the ODTC, like [photo] Jeromi, and [photo] Eric, [etc.]
Page 5: Ben will make New Friends with the Children at the ODTC! [Pics of groups of kids.]
Page 6: Ben will Sleep Over at the ODTC. [Pic of dorm room.]
Page 7: Mommy and Daddy Will Visit Ben at the ODTC! (A photo of Mom, Dad, Jake and Ben having fun on a water ride.]
Page 8: Ben will Have Fun at the ODTC! [fun pics]
As soon as Ben finished the story, he had his only cranky stretch of the weekend. Coincidence, maybe, but I truly think he “got it.” For me, it felt like I had just done the most awful thing I had ever done to anybody in my life. I could not imagine what it must be like to be a kid like Ben, who hates transitions; who has virtually never spent a night away from Mom or Dad; who fears change and new things; who loves his Mom and Dad like all kids do; who, developmentally, is in many ways still very much a young child (regardless of being, at 12, over 6 feet and 250 pounds)--and then to be told that you are going to be left at a new strange place, while being unable to (verbally) express your feelings about all of this, or even to ask a question. I found myself standing in the kitchen, away from Ben so I wouldn’t increase his angst, unable to verbally express my own feelings as I sobbed.
But the rest of the day was fun, with the trip to the lake and then a Fathers Day gathering at Karen’s parent’s house, where Ben’s aunts, uncles and cousins each told him they would come and visit him at his wonderful new school.
I can only assume that Ben applied some good old fashioned denial to his situation, because, except for immediately after reading his social story, he remained chipper right through the drive up to Oconomowoc. When we got there, he complained about going in, which is typical for Ben and unfamiliar places (though he had visited the place with us a month or so ago). Once in the door, he was not interested in meeting anyone, and seemed slightly agitated. We made a quick trip into the bathroom, where he told me, clearly and emphatically, “Go to the car.” I had to tell him, “No Ben, we’re staying here.”
The next stop was the infirmary with the nurse, and Ben was not in the mood to be examined. We said good-bye to Ben (the “little” good-bye--the “big” good-bye would come later) as Karen and I went to meet with the various people who would be working with Ben. It was a strange feeling to leave an unhappy Ben with strangers--the urge to swoop in and try to calm Ben down and protect others from any potential behavioral shrapnel was hard to resist but, at the same time, offered a tiny taste of the unfamiliar freedom we would soon experience.
Our meeting with the staff lasted for more than two hours. As has been the case with every contact we’ve had with the people at the ODTC thus far, we felt like Ben was going to the right place. The people seem very competent, compassionate, sensitive, understanding, bright, experienced, and just plain nice. They also seem to truly “get” Ben and his needs. Ben’s life will be structured with programming 24/7. From the moment he opens his eyes in the morning through bedtime, he will be busy. Even his “down time” is scheduled. This is what Ben needs, and it is also what he likes. Ben loves to be busy, and he enjoys finishing tasks. It really seems that the ODTC will get Ben to reach his potential, which he can’t do any longer at home. The fact that we are confident of the quality of the people and the ODTC in general is what has allowed us to do this, the almost-unthinkable.
More difficult to grasp is going a month before our first visit with him. The staff feel--and we agree--that Ben should be settled in before our first visit, so that when he has to separate from us, even if it is a hard separation, he will be in a place that he knows, feels safe and comfortable in, and likes. However, it is incredibly hard to imagine, especially for Karen, who has rarely been apart from Ben since birth--no, make that gestation--going an entire month without seeing him, hugging him, kissing his soft, chubby little cheeks, and seeing his sweet, beaming smile.
After the meeting, we unloaded his stuff and went up to his unit (or “pod,” sort of a cross between the floor of a dormitory and an in-patient psych ward, but brighter) to see him one last time before saying good-bye. As we entered his pod, I had an all-too-familiar Ben experience--I could hear him before I could see him. Ben was yelping and crying as he came into view, standing just outside his bedroom. As soon as he saw us, he made it clear he wanted all of us to leave. The week before, Karen had expressed the hope that we’d be able to help him unpack and settle into his room before we left, but that was her eternal optimism talking. In the reality of the moment, Ben was freaking out, and as long as we stayed, that wouldn’t change. It was time to say good-bye.
It was quick--a long good-bye 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.
To describe the week since as an emotional roller coaster only hints at the experience. It is heartbreaking to imagine Ben being heartbroken. What is he thinking? Does he know he will see us again? That we still love him? Autism’s hallmark of being unable to conceive of other people’s subjective inner life means he probably can’t really wonder if we still love him (or that we “love” at all--autism gives new meaning to that age-old poet’s question, “What is love, anyway?”), 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.
And, as we have always strived to differentiate between Ben and autism, we do not miss the autism for all of the shit (figuratively and very literally) that it has forced upon all of us, but as for Ben, we miss him so much it feels like our guts are being ripped out of us.
At the same time, the change for the remaining three of us in our household has been profound. I knew it would be very different, but after so many years of gradually adjusting everything in life to accommodate autism, it was only when it was gone did I come to understand the extent that it had become--had to become--the core of our daily lives. Removing autism from our lives was like having the framework, the entire skeletal structure of our lives ripped out, leaving an immense, gaping void that now required us to rebuild the framework of our household. We have been living in a house that has had to be more and more “baby-proofed” as Ben’s size and strength grew far beyond his developmental age. We were sitting on couches and chairs that had been broken and pulverized, replacement promising only more destruction. We could never let Ben out of our sight, so someone always had to be on “Ben duty.” Going out meant either leaving one parent with all of the burden, or paying much more than typical sitter wages to one of the very few who could handle Ben while we waited for the cell phone to ring with a crisis. Autism meant unpredictable bed times, unpredictable nights, and unpredictable wake-ups. Going places with Ben had become virtually impossible accept for a few standard outings to therapists and the like. At any moment, anywhere, anytime, there was a good chance Ben’s bowels or bladder would bring about the kind of event that most parents recount for the rest of their lives as their big parenting horror story, but for us was business as usual. These and a thousand other aspects big and small were now history, or at least someone else’s problem to solve. Ben is where those issues actually can be solved through 24 hour a day behavioral programming that should eventually re-hardwire his brain through behavioral repetition.
That evening, Jake had a couple of friends sleep over, which was good because it kept him from hearing the heavy silence and feeling the uncanny calm of the house that first night. At about 9:30, Karen and I, anticipating the stampede to the kitchen looking for a snack, called up to the boys, “Let’s go get some ice cream.” We grabbed the dog, crowded into the van, headed to Baskin Robbins, and ate our ice cream on the bench outside the store. For Jake, it was a first: He had never had the experience of a spontaneous trip with Mom and Dad, and friends, to get ice cream. It was our first “normal” experience as a family, the kind of normalcy that most people take for granted, but for us, it was anything but normal. It was extraordinary.
This will be Jake’s first summer where his parents can take him places and do the things that make summer summer, and if it were happening any later, it might have been too late. We’re catching him at the tale end of his childhood before his hormones command that he totally hate and never come near us, and we’re going to try to make the most of it.
We have called the ODTC every evening, and the reports have been good with the exception of eating. You will not use up both hands when counting the foods Ben will eat, but the staff was committed to getting Ben to try other foods besides grilled cheese and plain hot dogs. Besides a couple of snacks and the plain yogurt and the apple juice that are mixed with his medications, Ben ate very little in his first few days, refusing the offerings at meals, though he was able to sit as others ate, which is a stretch for Ben, as the sight of others eating can make him sick. Then Sunday, a breakthrough! Ben ate Sugar Frosted Flakes for breakfast, a corndog for lunch after the coating had been stripped (a hot dog, yes, but very “different” from what he was used to), and for dinner, he removed the ham from his ham and cheese sandwich and ate the cheese sandwich, again a combination of old (cheese and bread) and new (“raw”). He also tried and then ate jello! He’s on his way.
On his seventh day at the ODTC, Karen and I had a telephone “conversation” with Ben. Ben’s not a phone person. He listens for a moment but soon pushes away the receiver, which is why Ben was brought to an office with a speakerphone for the call, our first contact with him since his move. From our side, we sang him a favorite song, recited some of his favorite phrases (“Go Clifford go!”), and, among other things, told him how much we love him. Ben said, “The piggy says oink!” By Ben standards, it was a wonderful phone call, and we felt good about it.
So far, we’ve heard that his behavior has been good, with few outbursts, and no out-and-out tantrums beyond the first few hours after we’d left. His mood sounds like it is improving, and my daily question of “Did he smile at all today?” is bringing more affirmative answers. Though we won’t be seeing him for a few more weeks, we’ve arranged, with the staff’s OK, some visits by friends and extended family for the interim, beginning this weekend, which we expect him to enjoy. Karen and I are counting the days until we get to see our little Benny boy.
So, after one week, it sounds like Ben is rising to the occasion in grand fashion. As for us, we are adjusting to the most immense change we have ever experienced, second only to having Jake and Ben in the first place, almost 13 years ago. Jake, after expressing some strong feelings of missing Ben, also said, “I’ve never felt this relaxed before.” Until now, we hadn’t really realized how autism and its constant requirements had made us so physically tense, every minute. After the second night of our new life, Karen said, “It feels like I’ve taken a muscle relaxant.”
If it only had been that simple.
June 27, 2006