Home from Japan...

Here's the view of Tokyo from our hotel window, our last night in Japan.

In a way, I suppose it was a good thing we didn't know how gruelling our trip home would be. Certainly, the trip to Japan didn't prepare us for how difficult the homeward one would be... However, to be fair, there were absolutely no hitches in plane flights or luggage & none of the many things that could have gone wrong did, so we were really, really lucky!

We were up pretty early Monday morning & had a nice breakfast in the hotel restaurant, then finished packing & had some time to lounge & get our last NHK public tv (home of Pythagoras Switch) fix before calling for a cart to take our luggage to the airport shuttle bus station right next door. We got our tickets & were on the shuttle within 10 minutes for the hour-long ride to Narita Airport. It rained on & off & was quite reminiscent of our ride into Tokyo, nearly 3 weeks before. We saw the sights we'd seen on the first bus ride with new eyes...

The bus porter had told us which stop to get off at & we had about an hour until we could check in, so Charlie & Brendan wandered (& finally got Brendan one of those vitamin drinks in little bottles he'd been angling for the whole trip, because it was his last chance :). Check-in, immigration, & security were a breeze- in Japan you don't have to take off your shoes or take the laptop out of the case, so there's so much less fuss, & there were hardly any other people in line with us. There was about an hour before our flight, so we hit a bookstore for last-minute purchases (Brendan has a natural homing instinct for Kamen Rider Den-O books :), for more distraction on the flight. And... we finally ate at a japanese McDonalds :) Yes, the fish sandwiches taste much better there... (naturally!)

When we finally boarded the plane we were ready to go, but Brendan & I soon were in tears, as we saw Japan receding in the window. We really want to go back!! We started out by looking at Kamen Rider books & puzzling out the japanese, then Charlie & I switched places & they played Uno for a while. When I looked up from a puzzle book, maybe 6 hours into the trip (we'd had two meals by then), I noticed Brendan had one of his Kamen Rider action figures out (one with millions of little pieces that fall off...) & was starting into meltdown mode. I decided that it was time to switch back & see if I could get him to sleep a bit (Charlie was glad to have a break :). I convinced him to put everything away & cuddle up with his blanket, & soon he was asleep. He only slept about 3 hours, but by then they were serving breakfast & getting generally ready to land in Chicago. In some ways, the time really flew, but in others, it was very uncomfortable & exhausting. I kept figuring out what time it was in Japan... When we landed it was somewhere around 2 in the morning & Charlie & I had done no more than doze a bit during the flight.

Chicago was the worst part of the whole trip, bar none :( Not only did we have to navigate immigration & then pick up our bags & do customs, having been awake for nearly 24 hours, but Brendan simply could not cope with the noise & the crowds by then. He was in so much distress from OCD anxiety in the immigration line (literally hundreds of people all in the same place) that they noticed, took pity on us, & unhooked the guide line so we could go ahead- no questions asked. We got him through the rest of re-entering the US on pure will-power, but then had to take a train (lugging the bags) to another terminal & go through security all over again. American security: with shoe & laptop removal (& the plush Pochama pokemon he was clutching to his eyes had to go in the plastic bucket & through the xray, too). Everyone was very professional & said not a word to us about our distressed kid, which was a huge relief. I even explained to Brendan that, if anyone asked, I would tell them that he was autistic so that they might understand (he said that was ok), but I never had to do it. We sat just outside security for nearly half an hour, getting him back together & Charlie went for cold drinks while we sat. Then we each took an arm & half-walked, half-propelled him to the gate, found a quiet place to sit, & we parked. Brendan lay down on the bench of seats with Pochama & nearly fell asleep, he was so overwhelmed. Charlie & I took turns hitting the restrooms & getting food. Our next flight wasn't for 3 hours, so we had time to eat & recover. Brendan alternated between doing just fine (regained his sense of humour & everything) & overwhelmed mode at the drop of a hat, but we were able to amuse him with more japanese books & making mazes for the pokemon plushies to navigate, using newspapers, shoes, & bags :)

The plane home was a teesy-tiny one, 3 seats across & acessed from the ground & up the stairs on the plane's door. Brendan was fascinated by this new experience, & then fell asleep before the plane even took off. He woke up about 15 minutes before we landed at our home airport. What a blessing!! Our next-door neighbour, Evelyn, who had dropped us off at the airport was waiting for us there- so nice to see a friendly, familiar face after the day+ we'd just had! The bags were there, too, & we got them to the car somehow & were home in 15 minutes.

Home looked really weird. The wrong proportions, the wrong smells. But it started feeling homey again very soon. We were blasted, of course. Evelyn brought over some yummy dinner & Brendan supplemented it with his favourite "no-chicken" soup from a can (tofu intead of chicken :). I called my mom to let her know we were home ok. Charlie got Brendan into jammies & into bed & he dropped off immediately. We unpacked & I decided against starting laundry that evening (that would have been "baka", as Brendan would say :). My hot shower felt so good I nearly cried. We were home & in one piece, & everything was home with us!

Yesterday was "the lost day". We drifted around, doing laundry, sorting through omiyage, putting things away. My body hurt so much I couldn't believe it, probably from hauling heavy bags & sitting on planes for too long (although it didn't feel bad at all when we arrived in Tokyo after the same length trip...). Brendan played AQ, played with his Kamen Rider toys, played games with Charlie, & watched movies. We watched the "Lucario" pokemon movie together, & it even made me cry in japanese... Grammie visited, to see with her own eyes that we were home :) Charlie went into work long enough to pick up an enormous box of mail & forms to be signed. Sigh...

Today we all felt a bit better, although I woke up at 4:15 & never went back to sleep. It was a rainy 4th of July, which, perhaps selfishly, suited us because we had no plans... We started thinking about the rest of the week- making a shopping list for tomorrow, Charlie going through the load of paperwork, he & Brendan taking Japan pictures & prezzies to the neighbours. I found that I couldn't eat when the clock told me to eat & was exhausted by 2:00 pm, so I took a nap. Charlie & Brendan headed out to spend some holiday time with sailing friends & I worked on tidying the house even more & getting caught up for the next few days' activities. I discovered that the newest Kamen Rider Den-O was online so Brendan & I watched it when they got home. This evening, at bedtime, he asked me to read to him (our usual, sometimes gruelling, routine before going to Japan), but I put him off (I was busy tidying upstairs) in the hope that he might fall asleep on his own. I went in after a few minutes & asked him what his favourite parts of the trip were, & he drifted off to sleep while he told me :) I asked Charlie the same question before he, too, went off to bed (although, with the fireworks right now, I can't believe either of them are asleep!!). Here is what they answered:

Brendan says that the best part of Japan was Kyoto, because Tokyo was too "urusai" (noisy), & because, although he enjoyed meeting japanese kids in Mizumaki, he was overwhelmed by their attention. He said he loved visiting all the temples in Kyoto, because the temples helped him to cope with "fleas" (his new term for "tics" :). He said that the calm & quiet, & the purifying wells & prayers all helped him a lot.

Charlie said that he enjoyed visiting the Onsen with Tomoko's family very much, but that his favourite parts of the trip were experiencing a different place, being totally out of our element & our ruts, & really experiencing a different culture. He said the trip to Uji (while we were in Kyoto) felt like our best full day in Japan.

I find myself also dwelling on how amazing it was to be out of our usual routine (for better or for worse) & to see our usual way of living from the outside-in. (I am still having difficulty getting used to people speaking english to me :) We tried so many different things while we were there, some which we would never stretch ourselves to do in regular life, for very good reasons! I was struck by the realisation of how very intense life with Brendan is, & how unrelenting his anxiety can be (& how demanding). And yet, there were times when he was stretched & rose to the occasion beautifully, & I was so heartened by these experiences. It helps me to understand that Brendan is learning & growing, becoming more capable of managing his anxiety everyday. I told Charlie this evening that, no matter what we might do next year for vacation, it will be easier because he's growing & learning. And the next time we go to Japan it'll be easier for the same reason (plus our japanese will be better :). I also find myself more focused on how I want our day to day lives to be, rather than reacting to how it is (because I'm immersed in it). I want to find ways to help Brendan become more considerate of others, even in the face of his own very intense needs. He has mentioned this to me, that he wants to be more thoughtful of others, so I want to find ways to help him. Like Brendan, I really enjoyed visiting the shrines & temples, & I really loved trying to communicate with people in their own language. There were so many beautiful things to see & experience. Another thing that I enjoyed so much about our trip was that there was so much time together as a family. In regular life, we tend to play ping-pong with Brendan, with Charlie at work all day & then coming home to dinner & then giving me a break from the intensity that is "life with Brendan". I take over right before bed time so that Charlie can do paperwork. The he & I sit for a few minutes & reconnect, then he goes to bed & we begin it all again the next day. While we were in Japan we were rarely apart & it felt very natural to do things together- from managing the subways to managing tics. It felt very good. When we weren't under the stress of keeping to schedules & planning our own days, it was really fun to be together, no matter how unevenly things went. I am left feeling really good about our family, & about being the family that we are. Perhaps the best & biggest gift of going to Japan :)

Being the change...

The first two mornings this week went like this: I get up & roust Brendan out of the tv room (right next to his room) where he's been quietly watching tv before the alarm goes off for the day to begin. He & I go ino his room & he chooses his clothes for the day. I leave his room, closing the door behind me & admonishing, "Please, only get dressed, ok?" & he replies, "Ok". I go & wash my face, then pick out my clothes for the day & dress. (For me the process takes from 10 to 15 minutes.) When I am dressed, I go back into the bathroom to get my glasses, calling out "How are you doing?" And both mornings Brendan replied, "Uhhh, getting underpanted..." Which means that he's spent the past 10-15 minutes not getting dressed. Blood pressure soars (mine) & I do my best to hold my temper while I brush my hair & think what to do...

It had been pretty much the same the week before break as well, & the break might not even have happened, so far as breaking undesirable patterns goes...

Yesterday I had had enough. I went in when he was getting his shirt on, took a deep breath, & explained to him exactly what would happen if we didn't find a way to change his dressing-time behaviour. I explained that having to chivvy him along every morning was very unpleasant for me & that when he replies "Ok" to my "Please, only get dressed." (in other words, don't do anything but get dressed) I feel as though he's making me a promise, which he then preceeds to break, which is very upsetting. And, if we can't find a way to change things, what I will do is leave him to do whatever he thinks is more worthwhile than getting dressed & then when it's time to go, I will collect him in whatever state of dress or partial dress, he is in & we will get in the car & go. If he hasn't eaten breakfast, then he doesn't get breakfast. As I am speaking, he is listening sullenly, sitting on the bed with a shirt half-over his head. It is an established fact that he can't listen & dress at the same time, & I understand this. So by choosing to unleash it all while he's dressing is somewhat counter-productive, but I decide that it has to be said, for my sanity's sake, & damn the consequences...

Then, I told him why I had not resorted to this solution (also known as "natural consequences") before. I explained that hauling him off to school in his jammies, with no breakfast, feels disrespectful to me. I don't want him to be either hungry or embarassed. But I need him to understand the importance of co-operating with the morning schedule. The thing is, Brendan runs hot & cold when it comes to getting dressed, so I've been brought to the edge of frustration time & again. The OCD has caused some bumps along the way, which led to his starting to pick out his clothes to wear last fall, since some of his shirts & undies sometimes triggered anxiety due to their reminding him of other things. The biggest problems are his being sparked by a lego design that he just has to try out just then, & his sitting & thinking during dressing time. As for giving him more time- I just don't think it would help. What Brendan really seems to need is better structure, since he seems to float through time without taking much notice of it unless it inconveniences him. When he was taking too much time eating breakfast a while back, & I got tired of chivviying him along through that part of the morning, I gave him the responsibility for checking the clock & making sure that he was done by 7:45, so he'd have time to brush his teeth & get ready to go. Any extra time was free time, so that was the incentive for eating quickly. This has worked really well, & all I have to say now is "Look at the clock." & he gets his act together. Up till now there's been sufficient variety between slow dressing days & quick dressing days that I have only contemplated following through with the consequences thing. And... I recently realised that there's another reason that I hesitate to do this...

Nearly 40 years ago my family moved to the city where I've lived ever since (except for nearly a year living in Ottawa when I was in my early 20's). I was entering 4th grade & it was the 3rd move & school since I'd started kindergarten. It was a really bad year... The school district we lived in then (we rented an apartment for a year before moving into a house) reorganised mid-year & I ended up in yet another school with new teacher, new kids... I was miserable. I had terrible stomachaches, stayed home a lot, & felt really guilty about it. I would have screaming tantrums sometimes- I remember feeling as though life was absolutely unendurable & would melt-down when I just couldn't take any more. (I should add here that I was also being sexually abused by my father, which didn't come to light until I was an adult, so I know that the overwhelmed feelings were due to this as well.) My parents' reaction, when I would melt down, was to throw cold water on me. I have no idea where this idea came from, but it did, eventually, work... but at great cost. It made me feel as though I were an uncontrollable animal when they did this. It embarassed me terribly & I'm sure that's why I eventually stopped. I never did get any sense of empathy from my parents, no support, just the sense that I was horrible & bad & worthless.

So the idea of embarassing my kid in order to get his co-operation is completely out of the question. As I write this, I realise that I could never take him to school in his pajamas (even though he told me that it would be worse to miss breakfast... :). I explained the consequences thing to him with the full intention of following through on it, but the effect was to let him know that I was at the end of my coping with the situation, I think, & to stimulate his thinking about solutions. And that's just what happened...

After we had both simmered down yesterday morning, & he was dressed & eating breakfast, I declared a break from the topic by initiating a discussion of his up-coming birthday party so that I could start laying-in supplies (always a pleasanter topic, birthday parties...). Then when we were both in a better mood I re-opened the discussion of dressing time. One thing I learned was that Brendan seemed to think that he could get "just one lego" done as well as get dressed on time, so we had a chat about the value of self-talk. I told him that sometimes I really don't want to fold the laundry, but if I don't things really get out of hand, so I tell myself "Now it's time to fold laundry." & usually I do. I explained that he has to remind himself that he has to get dressed first- that there's no time for legos first. We also decided that setting a timer would keep him anchored time-wise, so it wouldn't slip away from him. I have a kitchen timer that beeps at 10 & 5 minutes before going off, so that's a great way to keep him on track. I also told him that he might want to consider writing some of his lego ideas down, so he won't forget them & can make them after school.

By the time we left for school we were both feeling fine. We had a plan. School went really well. They were able to go outside & play in the snow & Brendan got his fondest wish- to be buried in the snow :) They were doing academic assessments, too, & Brendan told me that not only did the math assessment go well, but he really enjoyed it.

This morning the timer was in place & just as I was going in to his room to get him going, he ran past me into the bathroom. Diarrhea. Sigh. We set the timer anyway when he was done (& feeling better) & I got into the bathroom to wash my face. As I came out, I heard legos rattling & steeled myself... "How's it going?" "I'm dressed!" "Oh!" I went in & he was fully dressed by the lego bin. He told me that he figured he had some time left because the timer hadn't gone off yet (it had taken him barely 5 minutes to dress :). I gently explained that, because he'd spent a lot of time in the bathroom, he really needed to go eat breakfast, & then thanked him for getting dressed so beautifully. This made me realise that by setting a timer, I have basically given him this time to use as he wishes- as long as he gets dressed first. I'm going to have to remember to be respectful of this... He bopped downstairs in pretty good form & ate some toast. Charlie came home to get him (Wednesday he gives me a break from school driving) & Brendan ran for the bathroom again. I was ready to keep him home, but dad the doctor said "Get the Kaopectate..." Well, he's not running a fever & is in very good spirits, & Charlie said he'd alert Cherie that I'd come & get Brendan if he had any more trouble. And they packed spare boxers in his backpack (much to Brendan's amusement).

Over & over I am struck by how much my own childhood experiences are shaping Brendan's. I am also aware that the abuse I experienced as a child has made me much more empathetic toward my son's autism. When he melts down- for different reasons than I did- I want to support him, to hold him if he can tolerate it, & to stay with him & not let him suffer alone. It is healing to treat him the way I wished I'd been treated... I am aware, of course, that he is not me, & that his needs may be different than mine, so I try to keep this in mind as well. Brendan has responded well to empathy, though. And sometimes when he perceives that I am sad or upset, he hugs me & speaks kindly to me. :)