How did it all go so wrong...again

[buddy]

We went to make cookies and Q did really well, rolled dough, cut them, decorated them, was ugly to me once in a while but good for my sisters... I ran an errand and came back he was taking a 10 minute break, no complaints...so they took care of whatever happened, not a big deal obviously.

Then we finished decorating and were gonna put our separate trays of all the different kinds together. medications were good, I didn't miss any. My sister asked where a cherry pie came from and it turned out it was an extra from a shopping trip and they asked if we wanted to take a little home, Q grabbed the whole pie. I asked him to put it down and he refused and then took plates and started to pile up the cookies he decorated sayign they were HIS and not putting them in a container, I tried to get him to settle back down, go to green zone, he started swearing at me and every word in the world came out, repeating even when no one was arguing, he was totally stuck, I just gathered our stuff up and walked out, he had his plates and the pie and in the car he kept swearing and finally it started to let up, I told him that this is too hard. I can't go to any more family times and have them end like this. He said he was sorry and can we turn around and give Kayla the pie (my niece wanted some for her lunch. I said yes, we had to give them all of the pie though. He said ok... I went back, gave them the pie, and he was to wait in the car. I gathered up the cookies I wanted too as long as I was there and he got out... came in and started calling me a d-bag and b again... so I walked out to the car and he followed...

As soon as we started driving he asked if he could have his pie when we got home. I said no. Can I earn it. I said, not today. He said tomorrow then. I said we wlll see... he was totally accepting and back to how he was before the transition and food issue.

Those two things have been such huge triggers and they both hit at the same time. So frustrating. He did not get aggressive at all, but would not let go of anything. When I got the music on in the car he calmed and was mad at himself but knew he had really blown it. I get so torn because he has such a hard time, but I can't let him think it is OK either....

This is the 4th family event that has ended ugly. Some short, some long, so time does not seem to be the issue. Just the transition, and I give him prep, when we will be leaving etc. He just gets very single minded and there is no talking him out of HIS idea and his concern must be addressed. His cousins got their Christmas presents early... from their Dad because he and his wife will be out of town, so they all had iPods and Q admitted he was jealous. Now he is afraid that he wont get anything... The mean part of me is not ready to reassure him yet. Makes me not so excited about Xmas eve and day this year... I am tired of the blow up that seems like will happen no matter the steps I take to prevent it.

I wish there was a christmas respite I could send him to. But I know I would really miss him.

 

[pepperidge]

one thing I found was that Christmas caused my kids such huge anxiety that I finally let them "discover" what they were getting a week early. It reduced the anxiety about what they were going to get. Don't know if that would help....

 

[buddy]

Honestly might not be a bad idea.. at least for the big gift since the other kids got theirs. Especially since then on Christmas Eve, he will have one too to keep him busy and wont be so worried about things which wlll only come back to haunt me....

 

[StressedM0mma]

Buddy, I am so sorry that you had a hard time this evening. Why is it that transition is so hard for most of our difficult children? I hope that you can have a calmer Christmas.

 

[InsaneCdn]

Dee -
I'm guessing you're caught in a tough catch-22...
1) he's still not back to his usual form, so he's hitting burnout much sooner than he used to... thus, the behaviors...
2) He's used to being able to do all this stuff, so leaving early or not doing it.... would just cause a meltdown anyway

UGH.

 

[BusynMember]

Buddy, my heart always goes out to you. Very briefly, my mother had a brain tumor and then eight years later she also got brain cancer. The trauma of the surgery left her a very different type of person and she was unable to control herself in various situations.

With your sweet, precious son, perhaps his behavior is mostly due to his surgery, which had to have been quite invasive. If so, truly, if it were my own son, I'd lower my expectations that he could actually be in total control in stimulating family situations, and make quiet holidays at home, skipping the extras that other kids may find fun. I can only imagine how much you'd miss the little guy if he were in respite for Christmas.


When Sonic was young we learned to modify our holidays so that he could enjoy and tolerate them and started doing a quiet Christmas at home. Even now that he is eighteen, he prefers being home for the holidays. I just think our differently wired kids like as little change as possible.

Hugs, and you're such a great mom!

 

[klmno]

Wow...just wow. I don't know how you do it.

I can't help but wonder if things might be getting worse, just simply because he's at an age where testosterone is kicking in, even though cognitively and emotionally he isn't mature enough to know how to deal with it.

I wish you had more help. You seem to be doing so much more than any one person can handle and I'm so worried that this is going to take a major toll on you- and that would leave him in a worse position, as well as you. Please try to take care of yourself.

 

[TeDo]

I second ALL the other posts, especially klmno's. I am rally beginning to worry about you even more. You haven't called in a while and I've been so busy lately that I haven't called you either. You NEED someone to talk to. I don't want you to go to a "place" that you can't get back from. Q needs you but he needs you to be 100%. What have you done for YOU lately? Hmmmmm

 

[buddy]

Thanks as usual you guys. I do feel sad and frustrated that I can't fix this as easily as I have in the past. But I do not feel even a little bit defeated or not healthy. Up until that point, even with is typical Q behavior, I loved going out with my niece (and spoiling her a little) making the cookies, taking pics of Q and the kids (we compare them each christmas, put them all on the fridge every Xmas as a decoration) etc. We have a very routine schedule for xmas. Any added things, like movies or concerts we dont do.... Q asks about cookies all year....and we do it at the same house each year. He sticks it out longer than any of them because he really does well with it. Until this year, it has been such a positive.... but as you all pointed out, it is a huge time of change, and given what he has been thru I not only need to make accomodations, but maybe need to realize that he DID make it thru the entire thing with only that one issue and while really ugly it was not aggressive in any way (except my dropping about 7 cookies).


Our other tradition, we have christmas eve at my dad's house....then our home for xmas morning...then we go have lunch at sisters. Each of those houses there are presents and he knows it. He would likely scream in total upset for hours and hours if I did not go. But believe me, I have considered it. Maybe I just have to tell everyone to just accept that he is going to swear. The part of this that was so hard for me was feeling like I had to stop it all to make the others not have to hear it, but even the little girls have heard swearing and it is not like they are going to think...if he can do it so can I.....

If no one would tell him to stop it etc. it would likely be far less stressful. They just hate hearing him talk to me like that, the boys especially tell him to stop it. Of course that just escalates him. They hold off for a long time but then finally stick up for me. I feel terrible then. They think when I am silent and just getting my stuff to go that it means I am not doing anything, but of course I know better than to try to interrupt the storm....just have to ride it out and deal with it afterwards...when Iget him alone I can do the things I know will help interrupt it and calm him.

Sometimes I wonder... I know this probably can't happen...what if he was in an environment where we just said, go ahead, you can swear all you need to. Would that reduce his anxiety so much and after the novelty of it wore off...would he just not do it as much. I am sure I can't risk it but would be interesting.

He was so awesome tonight... just totally normal Q. Came to me to get his medications... put himself to bed early, etc. Didn't argue about the pie or any waiting to show he could use nice words, etc. He accepted it not in a pouty way, just did. That makes me think more and more that it is just so out of control, a tic tha tcomes and ends. He was not in a bad place and fully went back to himself after. Those high stress moments like transitions and especially when food/hunger is part of it (I told you guys about school saying he wont stop talking about food related subjects...including nonsense...can I walk to a X restaurant in California??? etc.)

ugg is right.

 

[buddy]

by the way, one reason I had not posted so much over the past week was exactly what you guys were suggesting here. I was feeling a tiny bit of a cold coming on and just did not want to be sick. I slept even during the day on Friday! It felt so good.

 

[Bunny]

I'm sorry that what was a nice day ended badly for you and for Q. Transitions are always hard for kids, but they are especially hard for difficult children. It sounds like you did everything right. It's just a hard thing for Q.

 

[SearchingForRainbows]

Buddy,

Glad you're feeling better! Transitions coupled with hunger are the absolute pitts! I also agree with klmno. Once that testosterone kicks in, it's hard for all kids, but for difficult children, I think it's 100x worse. Testosterone, transitions, and hunger too - A lethal combination for any difficult child! Hugs... SFR

P.S. Interesting idea about Q being in an environment where he could swear all he wanted too... difficult child 2 uses his fascination with primates to help him calm down. When he was younger, by himself in his room, he could talk about primates all he wanted to, draw primates on everything, watch movies on them, etc, etc, etc, However, when he wasn't in his bedroom, he wasn't allowed to talk about primates non-stop, "play house" with his monkey puppet, and just drive everyone crazy with his fascination over primates. Even though difficult child 2 had a safe place where he could surround himself with primate pictures, movies, books, puppets, toys, etc, to this day, and he will be 20 soon, he is still just as fascinated with primates as he was when he was a toddler. He still drives people crazy with his nonstop talking about them, and his silly behavior when he sees something primate related while in public. The difference now is that as long as nothing reminds him of primates while he is in public, he won't bring up the topic. I think this has more to do with help from his "life coach" and even a bit more maturity kicking in.

 

[DDD]

Sending support your way. Changes in schedule always triggered GFGmom and difficult child#2. Holidays were the worst. Alot of family traditions were skipped just to keep life on an even plane. Sorry he's having such a hard time. My circumstances were a bit different from yours but with difficult child#2 I gave him permission to cuss into the pillow..and scream too. Of course I had to pretend not to hear the words but it did give him some relief. What a challenge our kids are! Hugs DDD

 

[TerryJ2]

Oh, dear, I'm so sorry that happened again.
Good for you for going back to bed so your cold didn't get worse.
I don't have any suggestions. Just hugs.

 

[TeDo]

Maybe I just have to tell everyone to just accept that he is going to swear. The part of this that was so hard for me was feeling like I had to stop it all to make the others not have to hear it, but even the little girls have heard swearing and it is not like they are going to think...if he can do it so can I.....

If no one would tell him to stop it etc. it would likely be far less stressful. They just hate hearing him talk to me like that, the boys especially tell him to stop it. Of course that just escalates him. They hold off for a long time but then finally stick up for me. I feel terrible then. They think when I am silent and just getting my stuff to go that it means I am not doing anything

Maybe you should just sit down with your family, especially the boys, and explain it to them. That you know it is
"disrespectful behavior, should never happen, but that it is something he cannot control at the time......I you deal with it after we get home......I hate having to leave but I know how much it bothers all of you....hey, what do you think would happen if everyone totally ignored him while he was doing it?" Got the idea? Your family seems to be handling Q so much better than my family deal with difficult child 1. I would take advantage of that caring. Tell them how it is. Tell them what you think. Be honest with them. It might actually work with YOUR family. There is hope. JMHO

 

[buddy]

You are right TeDo.... They actually do respond to that kind of guidance well. The boys both called me and texted me when Q was in the hospital. One of them asked me in private if Q was going to die. They really do love him. One told me that when Q gets consequences, he thinks we are being too hard on him, he says it breaks his heart when he cries because he feels so bad. That little guy (well not so little, now 5-6 at age 13) actually let Q use his iPod yesterday...his brand new, just had it for a day iPod. Huge risk, but he is just that sweet (and adhd, his own behavior issues at times, but heart of gold). They are really both much better than the little girls who are in the tattle phase of life. They do OK until their "feelings" get hurt, lol. I always defend them but also remind them that he is just being Q. Not trying to hurt them.

I think it is like iwth our difficult child's you tell them once and at that developmental time they take it in and work on whatever you are discussing but you have to do it again when they hit a new developmental phase. I need to take the time to do that with my nieces and nephews again at this new phase for Q and their older developmental levels.

 

[Allan-Matlem]

Buddy ,
Not easy , but I am glad , he has managed to get back on track. The question is whether we can gather info about his concerns and then problem solve. In the moment is so hard. I think we need to to do something counter intuitive and slow things down without being controlling.

His concerns - do you have any ideas - tentative hypothesis - maybe when he does the cooking, decorating he feels that they rightfully belong to him , the pie - he had his eyes on it and wanted it for himself or decided how he was going to eat it all by himself. What does he say ? Does he have a problem with sharing his things ?

Your concerns - you want to him to enjoy the cookies and pie and also the other guests etc
define the problem - how can we make sure that he enjoys and we can still offer the guests

Using hindsight what would you have done differently in the heat of the moment.

maybe avoid confrontation - go along with him - he grabs the pie - Ok kid hold onto the pie , lets relax for a few minutes , I see you really want the pie , I am not telling you to put the pie down , I am not going to force you to do anything , I just want to hear why you want the pie so much - when we hear his concerns , he is more likely to hear our concerns - and snap out of his mission mode. etc

I understand where you were coming from in the car - but you were trying to be tough and punish him and making him stay in the car . He made a gesture by being willing to go back and give her the pie. You could have said it was very kind of me and very moral to regret what he did and try to make amends , instead he had to stay in the car

If you believe in the mantra - children do well if they can and not if they want to , it gives us the power to slow down and work with the kid , even in difficult situations when they have grabbed something not theirs

These experiences are windows for learning

Allan

Parenting is Learning

 

[susiestar]

I am glad you had a good time decorating the cookies. in my opinion that good time needs to be the focus more than the swearing and problems. You handled his meltdown very well and I am in awe. I don't know if I could have remained so cool.

As hunger/food are a big trigger for him, what would happen if you had stopped every half hour or so to have a protein snack? Hard boiled egg, 2 slices of thin deli ham wrapped up with a piece of cheese or some cream cheese, cubes of cheese, whatever. Just a very short pause during the activity to put a little bit of protein into him. Most people do some tasting while they decorate. Eat a cookie, try a bit of icing, whatever. That injection of sugar can contribute to problems, esp as food and transitions are already hard for him. Figure out what he likes that is mostly protein then do a short snack (refueling pause might be a good name for it, or whatever they call it in races wehn the cars have to stop for gas) and back to cookies. He shouldn't have to leave the area where he is working - just take it to him at least for a while. Of course he will have to wash hands after, just good hygeine. If stopping to go to the sink to wash is a problem, have some baby wipes on hand and let him use those - but ONLY after refueling.

We didn't do it every hour, or really on any schedule, but with Wiz I knew if we were decorating cookies and didn't "pause for protein" (what I called it to let him be SURE that it was just a pause and not stopping totally. I used pause because you pause a videogame and then go back to it, and that is what we were doing with the protein) then we would hae a HUGE awful meltdown when it was time to stop.

I'm sorry the end was so rough, but it sounds like you had a good time in spite of that.

 

[buddy]

maybe avoid confrontation - go along with him - he grabs the pie - Ok kid hold onto the pie , lets relax for a few minutes , I see you really want the pie , I am not telling you to put the pie down , I am not going to force you to do anything , I just want to hear why you want the pie so much

I do think this is where things went wrong right away.... I had the pie in my hand so I did not grab it from him, but he grabbed it from me and I pulled back and it was a battle for a second....I did let go and just let him have it thinking exactly that, but since there already was resistance, he did not calm and started grabbing plates and cookies too. If I had been alone I would have just let him stack them until he could hear me a little and we could problem solve as you said, but he was in fight/flight at that point, with others chiming in.... put it down, you can't have all ofthose, etc...

Then, in the car...I did not say he had to stay there to punish him... I said it to avoid the triggers again. His mind works like that... even when he sincerely plans not to do something, the smell, sight, etc. will trigger him back into the swearing etc. Remember, he is also brain injured and gets stuck, at those moments it is physical...his neurons are firing...not much to do but ride it out and then he feels terrible too.

So, it is not always true that he is not doing well just because he doesn't want to.... for him it is also if he CAN, despite desperately wanting to at times (and others not... he does have typical moments, smile) That has been hard for me to get used to over the years...but a big thing the brain injury experts have helped me to understand. HE has progressed a ton in his ability to problem solve though. And I am getting better to. but yes, we do have a way to go and these days he is still recovering from the trauma and stuck behaviors from the hospital. This very intense kind of I have to stick to my plan or I will die feeling from when he reacts like this. It fills me with sadness, frustration, anger, worry, at those moments, then I calm myself quickly and process it alone or now here with you all. I get over my wanting to take every toy he owns away forever feeling the second I see he turns it around and tries to make repairs. Stinks to be Q sometimes.

 

[Liahona]

Sending hugs and support. You did a great job!