ups and downs

[Ktllc]

I think we are heading down right now. V is back to his old behavior where he gets "stuck" on stuff. Things have to happen a certain way, or he needs to do a certain thing and I say no/not right now/in a little bit. And he gets "stuck", he cannot get past it.
For example, he wanted a specific toy to take with him in the car. I said, ok, get it and let's go in 5 minutes. I reminded him we had to leave and of course he never got the toy. We simply did not have time anymore and I asked him to go in the car. Meltdown, crying,etc. I raised my voice "come on! we gotta go, we can't be late for picking up your brother". More crying and "booooooo, Mommy is mad at me". And that happens 15 to 20 times a day. Singled out, that is not much. But one crisis after another, it gets really old. Why does he get stuck like that????
Big meltdowns when he said bye to his Dad, even lots of crying when I had go out on my own for maybe 10 minutes altogether.
If it's not V's way, we have a meltdown. But he does not act in a spoiled way. It's just that in the course of a regular day, things don't always work the way he thinks it should happen.
When he is in that mood, I just really don't know what to do. Sure I make sure the meltdowns are controlled and don't last. But I wish there would be something to actually change his mood so I don't have to keep on putting out fires.

 

[Malika]

Hi Ktllc. Funnily enough, I was thinking about you yesterday, wondering how you and your boy were (well, we don't know each other, but you know...)
I would imagine that what lies behind the "stuckness" (and my son gets stuck too, though not quite in the same way) is anxiety, and it is as if the anxiety is displaced by having the "ritual object", whatever it is. That is what causes the meltdown - horror and fear, you are are taking him off without the object that makes him feel safe in that moment. And then being left by either of his parents also causes fear and anxiety?
I am sure you do already, but I guess you have to accommodate him as much as you can - difficult to do when you have a busy schedule to work around, of course. As for getting to the underlying anxiety... that is rather bigger and wider. Are you still seeing the therapist?
Hugs. It's not easy.

 

[buddy]

My son can generally only really think and react to one thing at a time. Lots of kids with anxiety get in the same mode---I have seen lots of kids with autism like that (and for others during an anxiety episode). Does his favorite/comfort thing (if they are little we call them fidgets but mine has a bigger bear that once in a while is a big deal) anyway, does it switch alot or do you know his patterns? I used to have a bag in the car with the transition things I needed. (never anything HARD in case things flew)

No matter what happened or what his pattern is, you got through it and learned one thing for sure, during transitions, if he needs something it will be worth your time to just get it. At least that is one power battle I would choose not to fight. I forget how old your son is? (just curious)

In another thread we were talking about how exhausting it is to be nine steps ahead and constantly try to avoid fires before we have to put them out. At some point it just becomes part of life, but it is still overwhelming at times.

 

[Ktllc]

My son is 4. I really don't see a pattern, that is the problem. If I knew he needs x,y or z. I would be prepared. When in the car, I KNOW he will be asking for water, so I always make sure we have some before we go anywhere (even if it means running back in the house to get it).
Other than that, it seems completely random. Couple days ago, it was about tieing his shoe laces on his own (which he really cannot). We gave him enough time, but then we just had to go. He started crying, shaking, begging... A few minutes later, it will be something else.
I know what you're talking about, it is so exhausting to always be a few steps ahead. Now, I know better and NEVER do anything for him unless I ask him if it's ok. Otherwise, watch out "everything is ruined!!!".
If it was to be anxiety, I wonder where it's coming from. Who or what triggered it? He was doing so good a coule of weeks ago. I even marked the calendar! I thought someone had traded my son for a easy child. lol It lasted 10 days. 10 wonderful days.

 

[InsaneCdn]

Might be related to the clock change? If affects sleep/wake times, which can result in less sleep and/or disrupted sleep cycles... and a tired kid = kid with behaviors... x10 if its a difficult child to start with.

 

[TeDo]

From your descriptions, it all sounds like it's coming from the "Autism Spectrum Disorders (ASD) traits". My sons are both in various places on the spectrum. difficult child 1 sounds VERY much like your difficult child. I think you are right to not do anything for him unless he asks. However, with the toy for the car thing, that is something I would have followed difficult child 1 to get as soon as he said he wanted to take it. His organizational skills hoover so it is up to me (for now) to make sure HE follows through. Know what I mean?? If things are getting as bad as you're describing, my personal feeling is that he might be more ont he spectrum than you think. Either that or the traits he does have are strong ones.

{{{{(((HUGS)))}}}}

 

[buddy]

If it was to be anxiety, I wonder where it's coming from. Who or what triggered it? He was doing so good a coule of weeks ago. I even marked the calendar! I thought someone had traded my son for a easy child. lol It lasted 10 days. 10 wonderful days.

i was thinking the same as TeDo. In fact, I said my son was "autistic-like" until he was 4 or 5 when I had him evaluated at the child development center where I worked. I do see a pattern (but only from your posts, so of course I have the benefit of 20/20 hindsight). It does seem that transitioning him from what he is focused on is a huge problem. Not YOUR transitions to new things, HIS transitions in thinking. It is very common in Autism Spectrum Disorders (ASD) and the anxiety is internal. My son could never ever handle rushes...still has trouble with that, and as you said, it is unavoidable at times when you have to get somewhere. That is where learning the programs like "how does your engine run' or the five point scale all help loads, you can talk about the worries or upsets in their terms and learn little kid methods for calming down. At my home, sometimes I just have to accept being late. it is frustrating but not worth a whole day of upset because we started out wrong.

Even if you are not feeling he is fully on the spectrum, it sure seems like the learning and coping tools could be of benefit. I honestly do know how hard it is, and every day make loads of choices I wish I could redo and other times just have to accept that there was nothing I could do differently. He is who he is.

 

[InsaneCdn]

If it was to be anxiety, I wonder where it's coming from. Who or what triggered it? He was doing so good a coule of weeks ago. I even marked the calendar! I thought someone had traded my son for a easy child. lol It lasted 10 days. 10 wonderful days.

There is an inconsistency to this, that speaks to a more immediate trigger...
NOT that there isn't something bigger going on - that would explain HOW he handles things, and some of the longer-term patterns.

But if he was doing so well a couple of weeks ago... what changed? Ktlc says, nothing obvious. That leaves not-thought-of minor stuff, like the time change, or the hours of daylight, or some other small thing that us adults miss... that is triggering more "bad days".
If she can find that, there may be ways to modify the impact... and get back to "better" days.

 

[buddy]

There is an inconsistency to this, that speaks to a more immediate trigger...
NOT that there isn't something bigger going on - that would explain HOW he handles things, and some of the longer-term patterns.

But if he was doing so well a couple of weeks ago... what changed? Ktlc says, nothing obvious. That leaves not-thought-of minor stuff, like the time change, or the hours of daylight, or some other small thing that us adults miss... that is triggering more "bad days".
If she can find that, there may be ways to modify the impact... and get back to "better" days.

Well, I agree that things like that do make a huge impact. If looking at it that way i would be more interested in what changed it in the first place to better days?? Then, look at what changed to make it back to what it had been like all of the time before those 10 glorious days.

I have had loads of times where for a short time, something internal settled down (related to external or internal factors) in my difficult child that made for short breaks in the more extreme issues. i suspect the 10 days was not his typical state given what she has posted before, but we dont live there so would love it if I was totally wrong.

 

[Ktllc]

Let's try to recreate the time line.
Switch him to shorter school days: 10 days into the new schedule I had a new kid.
So good for about 10 days.
Then we started Occupational Therapist (OT) (only new event that I can think of): went down hill real fast.
So down hill for about 2 weeks but still not back at square one.
Then husband had to be on the road one more day everyweek (we went to 4days work/3days home to 5days work/2days home): back to square one.
I've actually just gotten the autism test report. According to that, he is not on the spectrum but shows tendencies. On the ADOS, he got 1point for social. On the childhood autism rating scale, he has a score of 21. It says it is slightly elevated with regards to relating to people, emotional response, management of change, listening responses and actvity level.
She did suggest "the incredible 5 point scale" and "How does your engine run". I'am going to have to look it up.
I grieve for those 10 wonderful days... I wish I knew how to replicate it! I can't possibly make is school day even shorter. I have thought of homeschooling (although he is only in pre-k right now), but I don't know if I have the strength to do it.

 

[InsaneCdn]

I grieve for those 10 wonderful days... I wish I knew how to replicate it! I can't possibly make is school day even shorter. I have thought of homeschooling (although he is only in pre-k right now), but I don't know if I have the strength to do it.

Don't go to home-school NOW... it would just be one more change.

Assume there is a fatigue issue. It can be really hard to pin down, and can come in many forms. Just assume its a problem. Assume he is physically/mentallye/emotionally tired. Then... find ways to counteract that.

Work yourself into a really rigid schedule for a while. Ya, I know, its really, REALLY hard to do. But... it can work wonders. Bedtime and alarm time and breakfast and meal times and bath times and whatever else you can... needs to be almost identical, almost every single day. Create as much stability and predictability as you can.

Next... get the pre-K to do the same, as much as possible. NO "oh, I just thought of something fun" left curves... try it until xmas break, for starters - thats only 6 weeks or so.

Just from what you wrote in your last post, there is something changing at least every other week... and THAT is enough to move a kid from "just barely coping well" to "totally off the deep end".

 

[buddy]

totally agree with IC, that was a lot of change. Again seems transitions in some sense really affect him. That is good news actually, Of course we have changes and transitions in every single day, but to know that is a trigger helps me feel anyway, that it is not so random. Glad they suggested those too, I have never bought the engine run program, but did own the 5 point scale book. I always just jumped on the school's use of htem with my difficult child but we used them where I taught too. Now he has that program that is a combo of both of them. I will try to find the name because I understand it is actually formally published now. If I forget, remind me! It has worked better than either of the other two alone.

you did good mama.

 

[MLA]

I think we are heading down right now. V is back to his old behavior where he gets "stuck" on stuff. Things have to happen a certain way, or he needs to do a certain thing and I say no/not right now/in a little bit. And he gets "stuck", he cannot get past it.

Wow, Ktllc, I just wrote you a pm saying how it seems like our kids have some overlap and then I read this post. You could be talking about my R. Exactly. She does not have Autism Spectrum Disorders (ASD) but a regulatory sensory processing disorder. She has gotten "stuck" on things her whole life and can't move past them. She'll get an idea in her head and cannot let go until she can see it through. Which, of course, is impossible sometimes. A missing toy, hearing the answer "no". It's gotten much better at times. But is often unexplainably inconsistent. If you've ever read the book Flowers for Algernon, it's the same thing. She'll do great for a few days and we'll think we've turned a corner only to take a zillion steps back (seemingly) out of nowhere.

I'd be happy to talk to you about what has worked and what hasn't for us. I know how hard this can be...

MLA