Such an interesting day...

[buddy]

First, last night I didn't change Q's patches which is fine, we have done that many times, can change them the next day b/4 school...doctor says there is really a couple of days worth of medication left in the patch so I never do a power struggle over night vs. morning. But maybe with the growth or this particular patch or whatever... he woke up ugly. Was so blurty and no to everything...more than the usual morning stuff so I had to lock the door and cancel the bus which is a risk because I knew he would escalate until he accepted it. I gave his clonidine boost which I have been told to do when I change in the day. He had been kicking doors, screaming etc. So I could not risk his getting on a bus to school. I told him when he calmed he could go and he did calm. He was at school not later than an hour after it started.

so, on the way there he said that there was a school store set up and if he could really do an amazing job today could he please have a few dollars and he would EVEN MISS THE BUS (LOL) and I could drive him to make sure he got there so he could see what they had. Honestly it is probably nothing...trinkets, pencils etc... but Q hears the announcements at school and thinks he has to do everything they mention even if it has nothing to do with him, he gets so worried about missing out.

I said I thought that was an amazing idea and I would be looking forward to hearing how the day went!

Well, I didn't get a call yesterday but Q admitted he had some hard times during the day (it is so weird that I am not getting the emails and communication about this... I tell you guys that it is anxiety provoking but obviously it is necessary anyway ... I need to know what is going on... so I like to think that means nothing happened but of course then I find out that he had grabbed the teacher's arm and that ucky psychiatric had to come down to get him out of the room... anyway.... So, she said wow, today was a total turn around from yesterday. He finished work and even asked if he could do some algebra that he saw other kids doing (he has never done anything close to that) so she said sure and they got two little problems done, got to introduce the concepts and it lasted for 35 minutes of work in the classroom by the way (no kids were there though, lol) She said she whispers to him a lot thru the fm system and she said, if you can stay in green you can... and he whispered back to her.. OK...

She said they didnt' even once have to call anyone to come and escort him out of the room.

So, probably a combination of things but interesting.....

1. he got the clonidine boost so as I have thought for months... if we could only safely increase what we know works for him every time we get into this situation (growing and medications not working as well) then that would probably solve so many problems...sigh

2. I put my foot down and followed thru logically, you must use your tools to calm, you must show me you are picking a tool (He has a paper full of them that I use to show him choices) or it is not safe to go in the car much less the bus... so he did the breathing and worked hard to calm down...

3. the trainer does seem to help when he is in a good place, he gets much more work done and seems to show higher comprehension.

4. he had a huge thing he wanted and was willing to work for?? sometimes that backfires because he gets to anxious and if something uncontrollable happens he feels he has blown it and then goes off the deep end. so not sure we can do this often but once in a while, esp. when he is the one who is promoting the idea (is that collaborative enough?? LOL)



so I am really happy for him, I know it is still a work in progress but there are signs that if we could pull things together more he could make progress and if I can be on my game I can support him better.... I do catch many mistakes and get buried in things at times when i am just pushed and pushed....


Unfortunately he was home today when teacher called. SO, as per his pattern, though he came home great after a great day... he started to kick off. tell them I am sick of doing baby work and that it doesn't matter what you say I can do eighth grade work. Mrs TA told me that the work that I do there is work you specifically say I have to do. HUH?? I said I have nothing to do with the books, worksheets or anything. ( I wonder if she said that I was part of making the goals or something? he doesn't understand the iep stuff and how we do it so maybe he misunderstood??)

So, I got off the phone quickly. Tried to tell him I have never had a choice in the work (we HAVE had conversations about first you do this level work then you get to go to the next level etc. those kinds of talks all in an effort to reach some goal he states he wants... like driving a car ... have to read, have to memorize things, have to follow rules, have to pass a test etc.)

But I quickly ended the whole thing because he was stuck. I said he could just ask the teacher tomorrow. And he said if he asks her and finds out it is all me then I am in big trouble. WELL, OK then. ugggg

I emailed the teacher and filled her in and then asked her to take me out of it and dont try to explain the process or anything.... Just a simple first you do this then you get to do that. I am sure she will do that, she really does do most things kindly and gets him in terms of that kind of stuff. Poor Q just thinks he is so RIGHT. He was really upset.

So, the day was interesting. good parts, great parts, weird thought parts, frustrating parts... Well, normal life in the DQ home I guess.

 

[susiestar]

I know he had trouble but it seems like a good day mostly. I get frustrated here when we have a good day and then husband gets upset about something and then says the whole day is ruined blah blah blah. I know it can be hard for teachers, but I hope that the school psychiatric, etc.... are not doing that with Q. You do an AWESOME job with him, really understanding his challenges and what he is thinking and meaning and I don't think you give yourself anywhere NEAR the credit you deserve. You really are awesome with him. It isn't just that you love him, you understand him and seem to be very in tune with him.

I am sorry he had a rough morning, but he sure pulled it together. I hope the teacher assures him that you are NOT the one choosing his schoolwork. I can see how he might think that from IEP meetings. I still laugh about back when Wiz was 4-8 or so he firmly believed that New Year's Eve parties were ALL about parents getting together to figure out how to be mean to kids and punish them if they don't do their chores. That it was the ONLY purpose for NYE parties, lol!!! I can honestly say that other than laughing about what Wiz thought we were doing, I have NEVER gone to a party to discuss how to be mean to my kids. It was a tempting thought, NOT. Parties are for NOT talking about your kids.

Now Wiz has some understanding of how funny we found that, esp after my folks has custody of my niece half the time for about 6 mos. OF course it didn't stop him from convincing niece that NYE parties were all about that. He has such a strange mind, but a fun one. Understanding how my kids think is, in my opinion, the best part of being their parent. I am never not amazed by it and often am also amused. Q has a neat mind too. There is always something going on. I don't think I could have coped with a kid who didn't have things going on in their head.

 

[StressedM0mma]

Wow. It seems as if overall he had a pretty good day. Sorry for the bad times mixed in. Is there anyway they can boost his medications? Or is it too hard to do with the enzyme disorder? It seems like it really helped today. I hope the teacher settles the "debate" over whether or not "you told them what papers" he has to do. I always try to put things back on the school whenever possible. It leaves me out of the whole thing.

 

[buddy]

You both are so great. Thanks. Yeah, it is funny the way they think sometimes and I do enjoy it, even those times like these that are kind of frustrating, that is why I said it was interesting... but any day I hear he did well is a great day!

the medications... OH I WISH... it is not the enzyme issue, it is that he is on such huge doses as it is, they are afraid of cardiac problems, that the high dose of stims are adding to the seizures, that the high clonidine will cause blood pressure issues.....and both of them .... they are worried about liver issues in his later life and other things they scared the yucko out of me about.

All along I had been told that the reason it was okay to be on higher doses was due to his enzyme issue and also because brain injured people need different doses than for other conditions.

This was all the reason we started looking at other medications to see if they could fill in the gaps now that they wont go up on the medications. But it would be so much simpler of course in my fantasy world if what we know works, could just be done like we always have done. bummer.

 

[StressedM0mma]

Yeah. I live in that fantasy world too. The Abilify scares me, but so far it seems to be helping. difficult child did mention last night that her brain was telling her she was hungry but her stomach wasn't. I worry about weight gain on it. She is so tiny that any weight gain would be so noticeable to her. Plus they weigh her everytime she goes to the psychiatrist. Not to mention the glucose issues. And the tongue thrusting etc.
I hope Q has had a calm night and he can ride the bus tomorrow.

 

[DammitJanet]

Buddy, is there any reason Q cant have a treasure box anyway at school like most classes do in the early grades? That might actually be a good thing for him. Considering how much he was looking forward to that, it seems something like might actually be a motivator. It would have to be something he could easily meet in the beginning. In fact, he could basically never fail to meet it for the first month or so. After that they could go down to green 25% of the time or something like that. You can get huge bags of dumb stuff like stickers or little erasers or stuff like that at party stores quite cheap.