Monday, November 06, 2006

Sad & numb...

This morning I'm feeling sad & a bit numb. B had a really tough time this morning. He slept in right to the alarm, something that he dislikes because it really helps him get ready for the day when he's had time to play or watch tv before "officially" beginning the day. He wasn't looking forward to going back to school after the weekend. Last evening after his bath B sat on the floor & fiddled with legos while telling me, in a depressed sort of voice, that school was awful & that today would be awful because of school. I told him that school is really important. I considered reminding him how out-of-sorts he'd felt last Monday when he was home sick from school, but decided this wasn't the time. This kid needs to feel at home in the world & narrowing his options didn't seem like a good idea... So instead I asked him to think about the things he enjoys at school. I said that he seems to really enjoy outside time & the game he plays with his friends almost every day. He said that they didn't have much time to play... but I told him that it's still a bright spot & can be looked-forward-to. I have been trying to get him in the habit of thinking positively about things, so I encouraged him to think of the positive things about school. He still sat hunched-over his legos, but after a few minutes of silence he seemed to perk up. He started telling me about the lego characters he was holding & became animated once more. This felt really hopeful to me, since it was the first time I've observed B to get himself out of a funk, without active participation from me or C. This morning he was back in funk-mode, without the resources to bring himself out of it. Then, as he was getting dressed, he balked at putting on his shirt. At first he just said that the red on it was "asymmetrical" & I said that it was a tie-dyed shirt (one he made himself this summer) & that was the nature of tie-dye. He told me that the red gave him thoughts that make him tic, that it makes him worry about Rufus. I guess on one level I've been waiting for this. He's been having trouble with the colour red reminding him of unpleasant things (blood, guts) since the summer, but he's managed to keep it from becoming too extreme (excluding every red article of clothing he has) up until now... He's been wearing this shirt for weeks & I reminded him of this. He said that he was able to overcome the thought up till now, & I told him that I'd known & was proud of that, & that I wanted him to keep up his good work. No go. He was miserable. He told me somewhat snarkily he knew I thought the OCD was controlling, but I turned that conversation aside, using the "unruly Skitty" model, & said that I believe that the goal is for him to train Skitty, not for Skitty to train him. He tried to derail this ("I didn't think Skittys could talk") but I just told him that I don't think it's a good idea to give-in to Skitty like this. However, it was getting late & I put the shirt away & got out another one for him. Then he had to figure out who (of his pokemon plushies) would come to school with him. The blue belt pack that he usually wears to carry them in (his pants pockets aren't big enough & the plushies fall out) has gone missing, so he took the really small pokemon that fits in his pocket on Friday. B has an identical, except for colour (black) belt pack that could be used, but he's decided that it's a "medical kit" for his spy gear. We'd talked about this last night too, before bed, & that he may have to use some flexible thinking until we find the blue pack... This morning he didn't want to take any of the little pokemon & he didn't want his black pack & he was just mad about the blue one being lost. We decided to table to choice of pokemon till after breakfast. I managed to get his breakfast (warmed-up rice) together & he got his milk. I went down to the basement to start the laundry while he ate. It was getting really late & I barely managed to get a piece of toast in me before it was time to get teeth brushed & walk out the door. He didn't want to choose a pokemon, & I had to roust him off the sofa & up the stairs. I knew we'd never get out of the house if he didn't have somebody with him. While I was brushing my teeth he roamed around his room, all upset, but then there was quiet. When I came out he was putting Mudkip into the pocket of his cargo pants. I told him that this was a great solution, but we agreed that it wouldn't work every day because not all his pants have cargo pockets... He decided to tuck Rufus into bed rather than put him behind a sofa pillow, & we managed to get out of the house at a reasonable time.

I tried to get him talking about Weird Al videos while we drove to school & he did perk up.When he got out of the car, though, he saw something pink on the ground & it made him tic & get upset. In school, he was mad at his locker (he kept reaching behind things & then the thing in front would fall out) & tearful when we got to his desk. I hugged him & he told me that sometimes he feels like he's being ripped-up when he leaves Rufus. I told him that I feel that way sometimes when I have to leave him, too, so I understand. I asked him if he'd like to find Cherie (his consultant teacher) & he said yes. Cherie was in her office, on the computer putting the finishing touches on B's new daily schedules. They are very cool- there are little clock-faces as well as the hours in numbers. I think this will be a wonderful tool for him. We told Cherie that B was having a rough morning & she told him he could find "White & Nerdy" on YouTube & show it to her, as she'd promised on Friday. That really cheered him up & I left to go greet at the school door. When I came up half an hour later he was playing on the computer, having been in his classroom successfully for a bit & was waiting for discussion group to start. He seemed in a much better place & I was able to leave without feeling like I was abandoning him.

Chatting with others at the door & greeting all the kids has a cheering effect, but it didn't last today. I think I just worked too hard trying to help him stay together, at times by pure force of will. Keeping my temper in the face of his occasional sarcasm takes energy, too. It's so hard to know what's best to do. Getting back to his original difficulty this morning, I don't feel as though I can just leave him to act at the whim of the OCD thoughts. I don't think it's healthy for him to think it's ok to live his life like that. The sense I've gotten from his psychologist is that we need to challenge B as much as we can, falling back when it's obvious that he's not going to be able to overcome the thought at the present moment, & that's what I did today. It's very much like living a philosophy, & takes a lot of thought & energy. It would be easy, on some level, to let the OCD dictate what he does, but my own experiences with OCD make it more uncomfortable to take this easy way out. I try very hard to clarify for B the distinction between doing things that he chooses to do & doing things because the OCD thoughts impede or encourage him to do things that way. If he can tell the difference, & he can, he has a tool for "training" the OCD.

In a little while I'm going to see the rheumatologist again, for a follow-up appointment. My dealings with this doctor have not been easy so far & I am having trouble keeping my eyes on the prize, which is to keep myself functioning optimally for myself & my family. This particular doctor has made the assumption that, because my child is autistic, I have a "difficult" realtionship with him, which is a bunch of idiotic bull. I'm trying to figure out how to challenge his assumption without appearing confrontational or "difficult" myself. I'm hoping I have the courage/energy to address this issue with him. I am just plain tired, though. I guess I'll do what I can. Wish me luck...


At 12:03 PM, Anonymous Anonymous said...

Sometimes though when you have chronic OCD you need to take a break and be allowed to not have it constantly mentioned or have every behavior determined if it is OK. It is incredibly exhausting to have to be challenged all the time. No one else is expected to be challenged all the time about their thinking - they are allowed to have fun and just be.

I would take very seriously his thoughts about school too. I became very depressed as a kid because I just could not see how things were going to be different and I hated school. I was bullied and even if that is not happening if it is a very unpleasant place for him than think about how to respect those feelings. There are no easy answers, but sometimes I think just having someone listen to you instead of trying to force you to change and challenge all the time can be validating that you are OK even if you are doing things that are OCD related.


At 1:36 PM, Blogger Lisa/Jedi said...

I appreciate your comments, LB. I try very hard to keep life in balance, without too much challenge or too much lacksadaisicalness (is that a word?). I also use my own experiences with OCD to help gauge how I respond to B. I do realise, though, that I don't always do the right thing, nor at the right time. Sigh.

School-wise, though, we are doing everything we can to minimise B's stress & give him ways to make choices about what happens there. He's not being bullied, thank goodness (they keep a very close eye on things & B is a very good self-advocate). He's actually been having an easier time the past few days & spending more time in his classroom, which is great. His psychologist is making a visit to school later this week to help identify further thinkgs that can be done to accomodate his OCD challenges & make school more manageable.

At 4:21 PM, Anonymous Anonymous said...

It's great that they are on top of the bullying - it seems like so many schools think of it as a non-issue and it can effect the OCD symptms so much.

I wasn't trying to make you feel like you were being insensitive - but that sometimes I think there is a "therapy" burn out after awhile - even if it has been fun or accomodating. Part of that though is kind of just natural when you are dealing with it.

And of course - he could be happy as sunshine when he somes home from school and has a completely different attitude towards it :)

At 11:06 PM, Blogger Kristina Chew said...

I know more than I can say about having a hard time getting a child off to school in the morning, and all the little things that can hold the process up-----Charlie has so much less language than B, and what you relate of what he says gives me some insights into what Charlie might be thinking (he stalled/froze about 5 times en route to the bus---a line of cars was stopped in the street!).


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