Vacation part 2...

Actually, there is a little bit to tack on to the evening of our first full day at the cabin, forgotten in all the excitement... When we got back to the cabin after leaving the crowded corn roast, there was no electricity :( B had been really looking forward to watching a video to get himself calmed down, but there were no lights, let alone power for the laptop (we always forget that there’s a battery, but I’m not sure it would have lasted long enough anyway...). B was pretty unhappy as we sat in the darkish cabin & brainstormed things to do. It was too wet & mosquitoey to go outside where there was more light. C suggested playing Harry Potter Uno by flashlight, but B was not in the mood. As B’s mood became stormier & stormier, I pulled out some kazoos packed on a whim & handed them out. C & I started to play anything that came into our heads & B soon joined in. In between exploring the kinds of weird noises B could make on his kazoo, we played camp songs, rounds, hymns from church, & even the themes from the first 2 Treks & Staw Wars (what we could remember). We ended-up with a “guess the Beatles’ tune” game. It was 45 minutes of pure silly fun & we were all in a great mood afterward. B was ready for the Uno game by flashlight, & mid-game we were interrupted by a friendly park ranger checking how we were doing. She said that the park had lost a lot of trees in the storm & they’d had to shut down the power to deal with downed lines, but that it should be back within 2 hours. About 10 minutes after she left, I noticed the clock on the microwave was flashing, so we tried the lights & they were back. An eventful end to an eventful day!!

Sunday was cloudy & the weather didn’t look much more promising for sailing. We got up & ate cereal & doughnuts for breakfast, then went over to the club. I was worried that C’s mother would say something about our precipitous departure the night before, but not a word was said. B, C, & his parents played board games during the morning while we waiting to see what the weather would do. After lunch, they went down to get the boat ready, since it seemed as though the racing would actually happen. C was crewing with his father, along with another person from the club. The wind kept picking up & B would not have been able to go out with them, even had there been room. There were whitecaps on the lake & people were putting foul weather gear on as they readied their boats for the race. B & I got settled at the little beach in front of the club. Every year they truck in beautiful sand that slopes right down to the water, where the waterfront is roped-off for swimming. B had changed into his suit & was busily making a dam & reservoir before the boats even started out into the lake. The wind was whipping along, but B didn’t seem to notice, he was so engrossed in his projects. My mother-in-law was taking a nap, so I sat alone & knitted & listened to the play-by-play of the races (the Thistles & Lighnings race together, with staggered starts) from the people with binoculars on the club porch. The wind was so unpredictable that boats kept rolling over. I got nervous when they mentioned a yellow-hulled boat going over (my father-in-law’s boat is yellow), but it turned out to be a Thistle. The club nurse went running over to the rescue boat at one point, to receive someone who had started having an asthma attack when her boat rolled over. It was very exciting. B was oblivious to the excitement & the temperature. I eventually put his beach towel on as a shawl, but he said he was fine when I asked him if he was cold. Occasionally kids would wander down to play or swim during the race, but the only time B interacted with them was when a group of 4 boys came down to swim, picked up some of his beach toys & started to use them as weapons against each other. The decided one of them was “the kraken” & they were “shocking” the kraken to kill it. I wondered how B would take this game. He got in on the fringes of it, asking who was a “crewman” & who was the “kraken”, but did no more than squirt his shark-shaped squirter at the designated enemy. When 3 of the boys started picking on the 4th, chanting & ridiculing him, B backed off. I called him to me quietly & recommended that he saty clear until the whole thing was settled. He had already decided to do just that. Later on I took B aside & explained that they had been playing the new “Pirates of the Carribean” movie. B had 2 questions about their play: why had it been so violent, & why had their parents let them see the movie...? After about 2 hours at the beach the race ended & we went over to see dad & granddad after their boat came in. I could tell they had done well because they had come in pretty early after the race. They came in 3rd & C’s dad was very happy. We decided to head back to the cabin then, since B was tired after so long on the beach & we all needed a snack. C had blisters on his hands (despite his sailing gloves) from handling the main sheet in the heavy wind, & they needed to be salved & bandaged. We got back to the cabin & ate something, but B’s exhaustion was overwhelming him & he was soon in rage/meltdown mode. We did everything we could to help him calm down, but after 1/2 hour he was kneeling on the floor of his room rocking & screaming. C was sitting with him & I was trying to get dinner started because my in-laws were due to come over for dinner soon. I finally decided that B needed an intervention, went into the room, & picked him up off the floor onto the bed. I explained that I was worried about his inability to calm down & that I was afraid that he would get hurt if I left him on the floor. I sat with him & rocked him & eventually he bagan to “come down”. As usual, he apologised & cried a bit, & the 3 of us deconstructed things to see if he could figure out how to stop the rage before it took over & if there was anything we could do. C’s parents arrived before we came to any useful conclusions, but dinner we pretty well & B went to bed without any difficulty.

Monday B had wanted to go for a sail, but the wind seemed to have blown itself out & the lake was dead calm. B, C, & his parents got a Monopoly game going, & C & granddad finished the little sailboat they had been building by making the sails & rigging them onto the boat. B started getting restless so we took a walk down to see the water & check the wind. On the way back to the trailer for lunch, B became very snotty & angry (we were talking about alternative “swear” words- a constant endeavour these days) & by the time we got back to the trailer he was heading for a full-blown meltdown. We couldn’t talk him down & he wouldn’t pick an alternative (go back to the cabin, go for another walk, go to the bedroom in the trailer for some privacy). In the midst of it all my mother-in-law announced that when C’s brother had behaved this way she just sent him to his room to calm down. My father-in-law advised her to let us handle things (bless him). We finally decided to go back to the cabin, so we each took an arm & walked him to the car. The very act of moving him seemed to unstick him, & by the time we were on the road he was ok. I was wracking my brain to see if there had been environmental factors in the recent meltdowns. Lunch was not on time & he hadn’t had a mid-morning snack, but when we offered him food back at the trailer he refused it. During our lunch at the cabin we talked about how to manage things when he got so angry. B called the feelings “like sparks” & said that they overwhelmed him, so we asked if we could ask him if he was “sparking” & then he could tell us what we could do to help him. He said that saying funny things & having Rufus “fart” in his face would help if he was sparking. It was very comforting to be able to discuss the meltdowns with B & get his input into what happens to him. After lunch we went back to the trailer. We had explained to B that his grandmother might have advice or comments about his meltdown before lunch, & that she may have interpreted it as a tantrum, but that he could tell her to ask dad if she had any questions about it or unwelcome opinions. When we got there B was very pro-active, telling both of his grandparents that what he’d had was not a tantrum but an OCD-related difficulty. C & I stayed out of these explanations & after B was done there were no questions or opinions offered. I felt really proud of B’s willingness to bridge the gap of understanding between himself & his grandparents.

This is probably a good point to mention my in-laws’ attitudes toward B & autism. Since we do not live in the same town as they do, they are not as aware of day-to-day life with B, but we have always kept them up-to-date as to his diagnoses & particularly how they affect interacting with him. My father-in-law’s attitude seems to be to follow our lead & let us deal with B when he’s not sure what’s going on. My mother-in-law likes to give advice, but she is not terribly interested in the information we give her about AS, & whenever we mention the OCD she acts as though she’s only just heard of it... The main thing that grates on me is that she loves to compare B to C’s elder brother, who we believe to be paranoid schizophrenic. He lives about as far from his family as he can manage & was homeless before he managed to get on SSI. I wish I could have more compassion for him, but he’s one of the most arrogant, self-centered, & manipulative people I’ve ever met. After a disastrous visit with him when B was 5 (we all met at my in-laws for Thanksgiving that year) C & I decided that we would never see him again unless absolutely necessary. So it’s very hard to hear my mother-in-law breezily comparing B to C’s brother. C believes that perhaps, had the social environment been different in the 60’s & his brother had had the benefit of appropriate interventions, maybe his story would be different. In order to make visits with C’s parents easier, C preps them by phone a few days before the visit. For example, they have never dealt well with my being vegetarian & so we knew B’s new veggie-ness might cause difficulty, so C explained & told them that B & I would bring our own food for lunches (we did lunch at my in-laws trailer & then dinners were provided by us at the cabin). Trying to explain anything other than specific behaviours (like the tics B’s developed last summer) usually doesn’t register with my in-laws, so we do as much prep ahead of time as we can. That’s one reason we have dinners at the cabin, since that’s B’s most difficult time of day. When they are in charge of dinners, we often don’t eat before 7:00 or 7:30, because “eating & drinking time” (as B calls their cocktail hour) is very important to them. When we are in charge, we can push things earlier & make sure B isn’t freaked-out from hunger before dinner can arrive. B also has more alternatives for diversion when we are at the cabin. When visiting with my in-laws the main difficulty has always trying to accomodate B’s needs, which do not always intersect well with my mother-in-laws. Sigh.



Back to Monday afternoon, B had wanted to go sailing, but the wind was still absent, so he & granddad went to sail the little sailboat they had made, down at the beach instead. His grandmother decided to take a nap & C was helping someone at the club who had just bought a Snipe to tune & rig it. B had declared himself through with sand & beaches the day before, after taking another shower (2 in 2 days!) to get the sand off his body & complaining loudly about how uncomfortable the sand was the whole time he showered. However, he lost interest in the boat after a little bit so was back at making holes in the sand & diligently pouring water in them. I sat at the beach & knitted & chatted with granddad. In the late afternoon we went back to the cabin to get dinner ready. B was at loose ends, so C decided to teach him how to whittle, since they were going to make marshmallow sticks for the eagerly-awaited campfire planned for after dinner. (We’d tried a campfire the previous evening but the wood was too wet from all the rain.) B really enjoyed the whittling & made all sorts of smoothish pieces of wood from larger pieces :) B also made friends with some kids in the cabin across the road while we were getting dinner ready. He had been scoping them out for a couple days & finally got the courage to talk to them. C & I were really pleased because when B came back to report, he knew the names of the kids he’d been playing with, which is very uncommon for B. We talked about them a bit over dinner & he was able to give more bits of information- the boys were friends, not brothers, which, again, was an amazing accomplishment for B, who rarely can remember what other kids look like, let alone know their names & other details. Dinner went well, but the highlight was the first campfire of the trip- a bit wimpy due to still-damp wood, but enough for toasted marshamallows & s’mores. After B was asleep, C & I watched “Spirited Away” on the laptop. We were exhausted from managing meltdowns 2 days running & really enjoyed escaping into such a beautiful movie...

Again, to be continued...