Ben turns eighteen this summer, aging out of his ODTC units (Bonzai and Rainforest) that have been home for five years. His next stop -- the Monarch School in Shaker Heights, outside of Cleveland, most likely for the next 4 years. The ODTC (Oconomowoc Developmental Training Center) is in Wisconsin but close enough – 90 miles – to our house in Chicago’s northern suburbs that we were able to see him every weekend. The ODTC had been the perfect place for Ben and for us, with good programming and a staff that was consistently caring, warm, compassionate, and most importantly, really “got” Ben, and enjoyed him. They were his surrogate parents, and we felt fortunate every weekend when we headed back home knowing Ben was with them. Karen was working on the weekend (a rarity), so our final visit at the ODTC before Ben’s big move was with Dad only. The ninety minutes it took to get there were spent with a CD that had just come my way, a live broadcast of Art Blakey’s Jazz Messengers performing at the Jazz Showcase in Chicago, from 1977. I was in the audience for that show, the summer I turned 18, and as the music pulled my mind down into the smoky Showcase basement, the similarities, or lack of them, between Ben’s life and mine at eighteen seemed stunning. On that last visit, Ben and I made the rounds. It started with a Denny’s double cheeseburger, carried in before we headed out because Ben does badly waiting for waiters. Our usual routine involved my dropping Karen at the restaurant before getting Ben so she could order and have the food waiting when Ben and I walk in. This time, he got the burger right away before “a drive in the country” and hitting the other usual spots: McDonald's drive-through for a “snack” of a small plain cheeseburger and small fries, and Starbucks for a bathroom stop and old fashioned donuts or vanilla scones or both. As for the car, little kids (and 6’3” Ben is an eternal toddler) tend to fall into two categories: they love drives or hate them. Ben’s always loved the car. In fact, we had put about 280 miles on the car during most Ben visits – 90 miles to get up there, 100 miles of driving around with Ben, and 90 miles back. The following Wednesday (May 4) was moving day. Karen and I arrived to find all of Ben’s stuff packed and by the front door. Ben seemed to understand what was happening – we’d prepared a visual social story for him the week before – and he said his goodbyes with no apparent sadness, because, I think, he really didn’t get it in the “adult” sense. We knew he’d miss the place, especially the people, but that would come later. Right now he was happy as could be, giving hugs as requested, including back-hugs, where he backs into the person allowing them to give him a bear hug or as he calls it, “Squeeze.” It was Karen and I who had the emotional reaction to saying good bye. I could barely talk. First stop: McDonald’s on Touhy on Chicago’s border, coincidentally right down the street from where I grew up on the city’s Northwest side, and we’re met by Karen’s parents for their Benny bon voyage. As novel as it might’ve seemed to run into them, Ben completely ignored his grandparents until he had his food. I have little doubt he was happy to see them, even if his reaction, or lack thereof, might have suggested otherwise. Back on the road, we make a stop at a toll way oasis, which means another Starbucks snack, and then a final push through the rest of Indiana into Ohio and our hotel in Montpelier. We have two rooms booked, one for Karen and Ben, and the other so I can get a decent night’s sleep for the next day’s drive. Ben loves staying in hotels, and he tends to stay up late. As Karen wrote in an e-mail update, “Ben is having a fine time and thoroughly enjoyed the drive. We are now in a hotel outside of Toledo and he is very excited. He is so happy that he burst into song... ‘A rig a jig jig and away we go, Christmas’ followed by ‘Bim Bam Bim Bim Bim Bam.’ He must be feeling downright spiritual.” After checking in, we drove down the road to a hamburger joint, and with cajoling, Ben eventually went into this unfamiliar place that was not Denny’s, by which point, Karen had already ordered and the burger was at the table. Karen again: “We checked into the hotel where he tried to grab as many candy bars and packages of Oreos as he could from the store in the lobby. I was able to hide most of them. We then went in search of a place for dinner. The only difficult time was when we pulled into the parking lot of the local diner and Ben refused to get out of the car. In his mind, he thought he was going to Denny's but there was not a Denny's to be found in the middle of nowhere. We were able to lure him in with french fries and it worked out fine.” Interesting to us was the waitress at the nearly-empty diner who nodded knowingly at the news that Ben was autistic. I doubt that would’ve been the case 16 years ago when Ben was diagnosed, before “Autism awareness.” Back at the hotel, Ben went for a swim in the pool and then enjoyed being in the hotel room. He tried to stay up but eventually fell asleep at midnight. The next day, Ben was still in a decent mood, but less happy than the day before. We guessed that Ben was anticipating the arrival at a new destination, and Ben does not like going to new destinations. As we drove to Cleveland, he kept asking to go to Brennan's Market, a favorite cookie source back in Oconomowoc. As Karen wrote, "We think he figured we'd go there and then back to the ODTC." We arrived at Monarch before lunchtime, and Ben was upset and refused to get out of the car, so Karen and I unpacked his boxes while he sat in the car and complained. Finally, with the promise of food, he angrily got out of the car and trundled into the “cottage” where he will be living, still pretty agitated. He hollered. He grabbed my arm. He bonked Karen in the face. But then he found some bananas, which helped. We hugged him and told him we were going to a meeting and we’d see him again after. While we were in the meeting in another part of the building, Ben walked by the room, looked in the door’s window, noticed us, and kept walking, exploring his new surroundings and clutching a bunch of bananas and munching on one. Karen: “After an hour we returned to the cottage and he had already taken a bath (a favorite activity that was not available at ODTC), changed clothes and was bopping around happily. We said goodbye and told him we would see him tomorrow. He did not complain. Again, he requested that we take him in the car but accepted it when we said we would see him tomorrow. We were told that he took a nap and then woke up and ate cheeseburgers for dinner. He has been asking staff to read him books and was going out for a walk when we called to check in. “The next day, we came to say a quick goodbye and although Ben looked a little shell shocked, he did not put up a fuss. “The reports from Monarch have been good. Ben has enjoyed swinging outside and going for walks. He started school Monday and it has gone well. The teacher wrote that he particularly likes ‘calendar’ in the morning. (Ben has always been good at calendar!) After school he has chores and homework so I think he will be very busy. “Dave and I will return for a visit this weekend and then gradually increase the amount of time between visits. “It seems strange not to be making plans to come to ODTC this weekend. We miss everyone and we know Ben does too. One of the staff members in the cottage is a tall guy with a beard and mustache. When Ben saw him, he immediately approached him and then gave him one of his backwards hugs the way he does when he wants to be squeezed. We suspect he thought Justin, one of his favorite ODTC people, had showed up at Monarch.” So, whether he knew it or not, Ben was home. ===
E-mail update from Monarch: Ben's first day of School Monday, May 9, 2011 Hi Karen & Dave, I wanted to let you know that Ben did very well at his first day of school today. He transitioned over this morning without a problem and after spending some time exploring the classroom he had a good day. I don’t have too many details other than that the school team kept him engaged and was giving him tasks so they could get to know his abilities and skill level. He transitioned back to the unit without any difficulties too. I think he is continuing to settle in nicely. He has had some aggression towards staff but it seems to be related to the staff trying to get to know him and not being certain of his wants. He does great when he is presented with visuals to indicate his wants and needs. We have had to strip the kitchen a bit more since he does perseverate on wanting to get in there to search the cupboards. This is no big deal and is something we have had to do in the past for other kids. We are going to be using edible reinforcers with him in the beginning to try to help build the relationship with the staff and to teach him what the rules and expectations are at MBA. We will work to fade this over time. I know that Noah got everything set up for Skype today so we can schedule a time to Skype. --- Karen wrote back: “Minor aggressions towards staff is part of Ben's M.O. and mostly the extent of his aggressive behavior. I hope that having better visual supports will help to remediate this undesirable behavior. I suspect Ben is very excited to be living somewhere with an actual kitchen and that he keeps hoping to find something good in the cabinets. It's a huge relief to be at this end of the process and Dave and I are grateful that Ben is in the hands of such capable and kind staff.” === E-mail update from Monarch May 18, 2011 I wanted to inform you about a restraint Ben was in this afternoon. Ben was asked to start work, but he refused. He wanted to get a new book. Staff asked him to work for a new book. Ben grabbed and scratched staff. He was redirected to sit on his bed, but continued scratching and pinching staff. Staff asked him to sit before he could get what he wanted. Ben sat on the ground and bit staff. Ben was placed in a supine restrain from 3:19-3:24 pm. He was able to calm quickly, and responded well to taking a break in his room. He was able to have a great rest of the night, and worked on various tasks throughout the night. Please feel free to call or email me with any questions. === E-mail update from Monarch May 18, 2011 Ben is having an okay week. We have been starting to increase the demands on him and he has been a little resistant. We also are trying to implement a library type system with him for his books so that they are not just all over his room, the hallway, etc. He can access them one at a time and can trade them in when he wants to. He has had some aggression over wanting access to all of them but I think he is learning the system and I have even heard him ask, "Can I have a book please?" He did have a restraint this afternoon after scratching, hitting, and biting staff over trying to get into the staff office where the books are located. It was a short restraint and he calmed quickly. After, he was able to take a break and then work through more tasks on his schedule. He has been seeming a little sleepy lately. Is this normal for him to want to spend a lot of time in his room under his covers? I'm not sure if he is truly tired, not feeling well or is maybe sad about missing ODTC? What are your thoughts? When he is out of his room he is often smiling and engaged with staff. === E-mail update from Monarch May 23, 2011 We finally had some nice weather so he and his team members spent a lot of time outside, going on walks and at the playground. He also was engaged by going through his schedule in the same way he would during the weekday. From what I understand about last night is that Ben was taking a break in his room to look at his books and lay down after dinner and became upset. He had S[elf]I[njurious]B[ehavior] by hitting himself in the face but was eventually able to calm with squeezes and his blankets. He did not have any other behaviors throughout the weekend and had a great morning getting ready for school today. I'm putting together the calendar for him this afternoon so he can see when you are going to be here. ------------ So, overall, given the expected ups and downs, Ben is adjusting. We’ll be heading out tomorrow for our second visit. This past weekend felt almost surreal, the first time in five years that both Karen and I were home all weekend without going to see Ben. And we wondered: What was it like for him?
May 26, 2011
Ben and Karen at the hotel on our first visit since Ben's move, May 14, 2011