But...he thinks I have some "right" or something to not be in constant pain, and he has something called a "duty" to minimise the amount of pain I'm in

Let me just say how much I totally support this! And wish you the best of luck with working it out. And working from home.

does the medication cause fatigue?

They used to, until we realized he wasn't getting to sleep at night. He now takes 9mg melatonin at night, is up at 6:30 a.m. on the dot, follows his routine checklist (meds, breakfast, teeth, face, get dressed). He then is allowed to play DS or watches tv with his extra time. He is 10, btw. However, pre-meds in the morning consist of bouncing off the walls and terrorizing his sister.

Edit to add:---the checklist was only fully embraced when accompanied by an award system at first. As in, complete 4 days successfully, pick a prize (dollar store items!). We tapered the award system off after a few months.

Sometimes she says she 'shouldn't have to' do more or different things. The anger and disappointment are understandable, but don't help.

"Shouldn't have to?" Nobody should have to wipe up diarrhea but when you're a parent you do. I don't know if her anger and disappointment need to be validated so much, as she needs to get over her sense of entitlement that life didn't meet her expectations. It's just resentment on her part.

They used to, until we realized he wasn't getting to sleep at night. He now takes 9mg melatonin at night, is up at 6:30 a.m. on the dot, follows his routine checklist (meds, breakfast, teeth, face, get dressed). He then is allowed to play DS or watches tv with his extra time. He is 10, btw. However, pre-meds in the morning consist of bouncing off the walls and terrorizing his sister.

Edit to add:---the checklist was only fully embraced when accompanied by an award system at first. As in, complete 4 days successfully, pick a prize (dollar store items!). We tapered the award system off after a few months.

Oh, thanks! I'll recommend they look into the melatonin option. That makes a lot of sense.

Their checklist is based on a daily allowance reward. He makes a dollar a day if he completes it. My sense though, is that there isn't much consistency. Whether he succeeds or fails seems to be predicated more on mood than actual results.

I use a sticker system for our sessions. He has a grid sheet with three categories: game/questions/plan. If he plays whichever game I set out, he gets to put a sticker in that space. If he answers the 2 or 3 specific questions about behavior, feelings, etc, he gets a sticker and if he helps to develop a plan for new/improved behaviors/strategies for the coming week, he gets another. Once the sheet is filled in (four sessions), he gets to choose a sheet of stickers to take home, plus he gets to present the worksheet to his mom for home-display.

Last month, we had a particularly bad day together, so only one sticker. Once the month was over, the two blank spaces were mysteriously filled. As if I wouldn't notice.

I know when I find myself wanting to wallow and roll around in that "I shouldn't have to" place that I have stopped remembering to see the issues that mac has as a physiological thing and not his choice. I wonder if the mother would be saying she shouldn't have to do certain things if her child were deaf or blind. Now maybe she is like some of my extended family and she just doesn't believe it, then that is just a whole different problem.

I don't know, David. I can't disagree that resentment is something this woman needs to come to grips with, but the one thing I need to do for the people I work with is to treat them differently than everybody else does.

My tagline really does say it all. I don't coddle people. In fact, sometimes I'm amazed that some of my clients bravely take it when I push them really hard. But, in this case, both the mom and the boy had learned to control their environment through escalation and 'fits.' I'm guessing that my usual 'guns ablazin' approach would only fuel the fire.

There IS a massive sense of indignant entitlement at play here, but I haven't quite figured out how to peel it back without scarring.

It does make me wonder about how/why different people in similar situations choose different approaches. Bless msbelle, no matter how rough things get...and I suspect it can be much harder than she describes, I never get the sense that she has active disdain for Mac. This mom will say (to me anyway) that she isn't angry with her boy, but then resents him for being alive.

Reminds me of a youtube video I saw a while back...probably linked from here...about a dad with a CP son. The two of them have done hundreds of marathons, triathlons and such together. The son says that he feels free when they compete and the dad has just decided that this is what he does in life. It's hard, but he's going to make something of their situation that makes them both feel accomplished. That kind of courage truly humbles me.

I wonder if the mother would be saying she shouldn't have to do certain things if her child were deaf or blind.

I'm sure there are people who would.

So, my boss is finally starting to give me back some of the work my predecessor did, and she took over during the gap! I think I was supposed to be more grateful, but I am so not in the mood for her raindeer games today.

This mom will say (to me anyway) that she isn't angry with her boy, but then resents him for being alive.

And see I will say to his therapist and him that I am angry with him, but never do I resent him for being alive or the child I adopted.

I think a lot of it is getting in their heads. All it takes for me to be reduced to a pile of weeping mush is to think how it must feel in his head when he really thinks in these hightened states that he will just be left to fend for himself or that when we show displeasure, the next thing coming is going to be a whip with an electrical cord or some wire.

In a weird way, I can respect the mom for admitting she resents the situation. The image of Patient Suffering and near-martyrish self-denigration in situations like this is a strong one. It took a long time for me to admit that I often resented being married to a man with so many health issues, that I daydreamed about the life I might have had if Hubby was still the strong, active man I met.

Getting trapped in the resentment is the peril. It's hard to differentiate between a cathartic wallow in self-pity and an on-going whinefest that just extends the drama and doesn't purge the emotions.

I have had people say, "Why don't you leave him? You shouldn't have to live this way." I, being wife and not mother, do have that choice--at least theoretically. Unfortunately, I can't think of a way to validate the mother's resentment without reinforcing an ongoing whinefest.

and the dad has just decided that this is what he does in life.

I think that's it. I'm speaking primarily of my experience of going through a divorce and dealing with child custody issues, and I had to learn to let go of my "righteous" anger. I had every reason and right to be angry, but it was making me miserable. And it was going to make me a shitty person and a shitty parent. So. I chose not to be angry.

I've certainly still got issues related to that divorce and they do pop up with Emmett's Mom from time to time. But they're trust issues, not constantly being filtered through resentment that life didn't happen the way I expected it.

Holding on to your anger is a choice. I believe that. It'll burn in your chest but it won't keep you warm at night. It just makes you bitter.

Anyway, that's just my experience. I shouldn't extrapolate how others should deal with their circumstances. But I know that was the most important choice I made when I was going through my divorce, and I had a lot of clarity about that. I could see who I was going to become if I held on to that anger, and I didn't want to be that bitter person.