Practical applications...

The timing was perfect... after Monday morning's blog entry about re-thinking my expectations of Brendan, we had a regular, monthly, after-school appointment to see his psychologist. Brendan came bouncing out of school like a cork popped out of a bottle & as he piled into the car, announced that he felt like an "office-worker". He further explained that he'd gotten a lot of work done & had a bit of a headache, but his mood was quite positive, so I got the feeling that he was feeling good about his day. :) While he ate a snack, I asked him what the best part of the day had been (his weather research! Something that he'd been not very happy about before break...) & then what he'd done at lunch time, since we'd discussed this during our "food chain" conversations last week. He'd ended-up eating in the classroom with another friend (someone who's been having a lot of trouble with "food chain" issues lately) & avoided sitting at either the girls' or boys' tables. It sounded like they'd had a great time chatting & generally being silly over lunch. When I asked Brendan about the friend he usually sits with, who often triggers tics for him, he said that when this friend had asked to sit with him Brendan explained that he'd like to do something different that day & that had seemed alright with the other boy. (Tuesday's lunch update: Brendan asked one of the girls he's known since first grade if he could sit at the girls' table & she told him of course he could. When one of the older & higher "food chain" girls challenged him, he told her he had permission :) When the boy who triggers tics asked to sit with him, Brendan suggested that they play together during outside time instead, which was acceptable. Wow! Go Brendan...)

In the car on the way to our appointment I found that I had loads of things to talk to Brendan about, so after the schoolday debrief, I told Brendan that I'd been re-thinking some things & wanted his input. We talked about his behavour charting & how I was concerned that he'd outgrown how we're doing things. I told him that my observations lately have led me to understand that expecting zero meltdowns/blowups from him is unrealistic, since all of them are triggered by things outside of his control. I explained that I'd like the criteria for his earning or losing his "number" for the day to be based on how well he copes & recovers from meltdowns. Brendan thought that was fair, so we discussed the kinds of behaviours I was talking about: using self-talk, distraction, & other tools to help himself to recover, being proactive by telling us how he's feeling or if he's uncomfortable, & anything else that he/we can discover that helps. From this we progressed (now in the office waiting room) to chatting about how we're coping with his occasional foul language. I explained to Brendan that the original charting, with stickers for each day he doesn't swear, didn't work very well, perhaps because the incentives weren't very tempting. However, docking his allowance was really not working & causing a lot of conflict at home... By this time we'd made it into Dr. M's office proper, still chatting along. I should mention here that during all of our discussion Brendan was engaged, bright, attentive, funny. He seemed to really enjoy the process of figuring things out together. When we got into the office he began by engaging in some of his usual behaviours in there: checking out if there were any new toys, tossing a soft ball around, & generally bouncing around. I recapped some of our conversation so that Dr. M was up to speed & he was very interested & excited about the conversation. Brendan stayed with us during the recap, mentally at least, as he physically roamed the room, which was fairly unusual. What he generally does is engage in some sort of activity of his own while listening to us while I bring Dr. M up to date on life, usually without commenting. This time, Brendan commented regularly on what we were saying & was definitely part of the conversation. He ended-up pulling 2 chairs together to make a "sofa" & laying down, giggling, while he chatted with us. Dr. M liked the directions we were going in with re-thinking the charting & helped us to figure out how to handle the swearing chart, too. We decided to re-instate the positive charting with a more tempting reward, & also create a "swear zone" at home where it was ok for him to let loose... This came out of Charlie's & my perception that it was un realistic to expect him to never swear, & that it was more respectful & constructive to help him learn appropriate behaviour around swearing. Brendan declared the bathroom to be his "swear zone" (Dr. M agreed that this was an appropriate place for "potty mouth" :). Next we recapped the events of a couple of weeks ago, when Brendan had gotten stuck in his anger & played with matches. It was good to revisit this after some time had passed & feelings (for both of us) had receded. Brendan told Dr. M about the consequences for his actions, & this led us into talking about how successfully Brendan had dealt wih his feelings about going back to school last Sunday evening, & had repeatedly avoided meltdown. Dr. M asked him how it had felt to know he was going back to school after the break, & how he'd managed to keep it together in the face of those feelings. Brendan talked about feeling pressure, like he had to burst, & that he'd avoided actually bursting by talking to himself. They also talked about how story-telling can help Brendan to imagine different ways of responding to different situations, which led to our chatting about Brendan finally getting Dragon (voice-recognition software) at home & his struggles to get it trained properly. Brendan suggested to me that we work some more on the story we'd written for Dad's birthday, but I balked when it became obvious that he wanted to type it for him (!). I told him how long it takes me to make my blog entries (due to poor typing skills) & how envious I am of his having Dragon, & I promised to sit with him, help him with ideas, keep him from throwing the laptop at the wall when he gets frustrated :) as long as he would Dragon it instead of me typing. This seemed acceptable to Brendan :) (It's also led to Charlie looking into whether or not we can have more than one person at a time trained on the software, since it would be amazing if I could learn to use it too!)

Finally, I left Brendan & Dr. M to their usual time together (after asking the doctor if he'd felt as though he'd been doing family therapy instead of individual... grin). He gave me the latest issue of the Tourettes Society of America newsletter to read while I was waiting- it was excellent & made me realise that, not only did we need to join to get our own newsletter (did it yesterday), but also that the autism community doesn't have anything even approaching this level of support & information. It made me sad, because the reason for this is that the autism community is so bloody divided that there's no way we can get a focused, positive message out into the community. Arrgh!! What really put me over the edge with envy (of the Tourettes community) & disgust (for the loudest media voices in the autism world) was an article about challenging the popular stereotypes of Tourettes in our culture. This is a group that takes out full-page ads in newspapers & magazines in response to specific media instances where someone has publicly made fun of Tourettes. They have a series of tv ads by comedian Richard Lewis coming out with the tag line "Tourettes- it's not funny". Compare this to the constant slander of autistic people in the media as diseased, poisoned train wrecks, mostly by so-called autism advocates! It makes my stomach turn. (Also makes me keep blogging as loudly as I can!)

Brendan came bouncing out of his appointment in very good spirits. Dr. M was amazed & delighted by their meeting. He told me that he hadn't seen Brendan so engaged & vibrant since before the onset of the OCD. The take-home message was "whatever you're doing, keep doing it!" :) On the way home I reminded Brendan that I'd promised to start a blog for his stories, as soon as he'd gotten going with the Dragon. He'd forgotten, & got very excited about the possibilities. He told me that he wanted to write about autism, too, & I said that there are a lot of parents & kids out there who would be delighted to read what he has to say about it. Stay tuned... :)

Intention doesn't always make things go more smoothly... Brendan is 11 & has limited patience with frustration, so even though he tackled his Monday evening homework (on Dragon, with dad sitting with him) with a good will, he did end up wanting to throw things by the time they were finished. I keep thinking we need to lower his expectations somewhat & then do lots of short sessions, or something... The good news, parlayed to my by "conference call" (speakerphone in Cherie's office) on Tuesday morning by Brendan & Cherie (his consultant teacher) was that she has convinced our school district to intall Dragon on the new computer in her office for Brendan to use at school. Whee!! What seemed to finally convince the assisitive tech guy was that Brendan's using it at home & has started doing homework on it, after a 1 1/2 year hiatus in homework... I am so pleased that this is working out so well. And Brendan certainly will get more opportunities to use it, so he'll become more fluent, faster... Charlie & I were talking about this last night & he was pleased too, not just for Brendan, but that potentially this resource will be available for more kids at school who need it. Once again Brendan's opening doors for other kids, too. :)

One of the practical results of re-thinking how we're giving Brendan feedback about his behaviours has been realising that this requires more communication with Brendan about his behaviours. This may seem rather "duh!", but in practise, how often do parents talk about the standards they are applying to measure their kids' behaviours with their kids? Aren't these kids supposed to just "get" it? You know... over time, if you're consistent &, perhaps, unrelenting, they learn by repetition... right? Maybe this is the most important part of the recent re-thinking. Brendan is 11 now- rote learning just isn't fast or efficient enough. He's old enough to be part of the process, &, really, isn't that the best way for him to learn to self-regulate, by helping to decide what needs work & what's just fine, behaviour-wise? This morning, when thinking about whether or not Brendan had earned his number & sticker (for swearing) yesterday, I realised that I didn't have enough information to decide. So I asked him for feedback at breakfast time, then quizzed Charlie when he came home from work, briefly, to get Brendan for school. Brendan told me that he hadn't made it to the bathroom yesterday for a swearing bout over his homework (it was math, rather than something Dragon-able, & he was having trouble explaing to Charlie exactly what he was supposed to do), so I thanked him for his honesty. :) I asked Charlie how Brendan had resolved the conflict over homework & he said that they'd come to a satisfactory resolution, so Brendan did get his number, although sticker was forfeit. Brendan was rather surprised that he'd earned his number, so he learned something about what we consider acceptable behaviour. I really like this communal way of deciding the number issue, & I think it's giving Brendan much better feedback than just earning a lego or dvd after earning 11 numbers...

This morning, while perusing my usual blogs, I found this post by MOM-NOS, which was incredibly relevant to some of Brendan's & my recent conversations. It's about Teddy's Turn, a slide show of a boy just Brendan's age with Aspergers who was denied the right to speak to his class about his autism. It made me so glad that we live where we live & Brendan goes to a school where they have no idiotic prejudices about my kid or any of the other kids with IEP's. Give it a look, & meanwhile, I'll kepp working on my kid & his literary aspirations... :)

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. :)