How do I get them to understand????

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Hi All -

My DS is 11 and is a wonderful, bright kid. Because he was having grand meltdowns in the public school, they moved him to an ED classroom, which was a total nightmare and caused his meltdowns to get worse. After a year, we got him out to a private school which they call "day rehab" because it is a mental health placement. As it was a mental health placement, I had hoped that they would have a plan to teach my DS how to identify and then manage his feelings, so he can avoid meltdowns.

Instead, we find this is a behavioral program, which has level systems in place that have my DS terrified of doing anything that will cause him not to be on "blue". It is a much less stressful program than the last as far as his day goes, which is good. The thing is, whenever is is stressed, he saves his meltdowns for home and then refuses school because he doesn't want to "drop a level".

I don't think this is a good place for kids who already do the right thing when they can.

The last placement tried really hard and was very committed to meeting his needs, unfortunately, the environment was so bad, they couldn't add any stressor to his day, or he would flip out - so he wasn't doing school work or anything.

I don't know how to communicate (in a way that will get my way ) that he needs the smaller class and the routine, but this level system is very bad for him. There is a boy in class who sleeps all the time. DS tells me he can't sleep at home. Because he sleeps at school all the time, this child is on "red" every day, and DS is horrified. He doesn't think this boy can help it and is being punished for something he can't control. This increases his anxiety. He doesn't care about the kids who sass or misbehave being on red, when people break rules they should be punished (in his opinion).

In the last few weeks he has had the worst meltdowns at home that we have seen in over a year. He was suicidal, homicidal and absolutely out of control. We can't have him in a place that makes things so hard for him.

Who has been successful in describing this in a way that the schools can "hear"? I think DSs future depends on him learning these skills.

Thanks

I haven't faced that level of challenge with the school so I'm not in a position to answer your specific question, but I will say this: you've expressed the issue extremely well in this post. Perhaps you could turn it into a letter? Could be a start.

I anticipate the objections of;

He hasn't had a meltdown at school, it must be working.

We can't address a behavior we aren't seeing.


One of the meltdowns he had was so bad that I videotaped it so that if the police came, I could prove that I wasn't assualting him. I am thinking of opening the meeting with playing a part of the video.

I don't have a plan for what I think would be better - that's my problem. Further, I like that this behavioral system motivates him to do the best he can - it's just that it goes past what he can deal with.

In my experience, the school got on board when we brought documentation by a developmental psychologist and her team. We have the same issue - except for about 2 or 3 times a year, DS "saves" behavior for us; until we had the clinical backup, they refused to even discuss what was happening at home.

However, I think you're asking for something different: are you asking them to change the school's chosen system of behavior management? (It's not clear if you are asking for a different placement - that I can see as possible.) This may well be something to ask for, to organize other parents to ask for - but if the school is built on this system, it's probably not going to change overnight.

Maybe you could ask that your son be excluded from the system?

I do think you are right that you need to have an alternate suggestion to make when you have this conversation. I try hard not to walk into IEP meetings without some potential solutions on hand. Everyone takes you a lot more seriously, and the conversation moves a lot faster towards resolution when you give everyone some starting points.

What if the color system was tweaked? No downgrade for behaviors that can't be helped if the child does X to show responsibility for the results of the behavior? Do you think this card system is the main cause of stress?

The last few years I've rarely punished the kids because they both are, actually, trying. Instead we changed the conversation, to "I know you didn't mean to do that, but the object is still broken (or your sister is still hurt, etc), so what can you do to make up for it?" Some interesting things happen when the kids start to look at it from the angle of, "what did my action mean to life around me?"

But ... that takes a certain level of sophisticated thinking. Maybe most of the kids in that classroom wouldn't be up for it ... still, could be worth talking about.

At home our focus is always about fixing what's broken rather than "punishment".

Let me expand a little on what I think i'm looking for.

We agreed that we weren't sure if this was the appropriate placement and I agreed to try it. SO, it has been over 30 days, and some aspects are working and others (the card system) are driving us to increase the really scary meltdowns and therefore increase some meds. DS has gained an enormous amount of weight, so the increase in meds in not OK with me.

I think the overall program is for kids who can choose their behaviors. I do not feel that this is the case when it comes to meltdowns for DS. I'm sure there are stressors aside from the cards that are impacting his anxiety, but since he can't identify his emotions, he isn't talking about what bothers him.

If they had a good plan for how to teach him to identify his emotions and then what to do with them, we could probably deal with the colors/points. That said, he has an intern counslor who had no idea how to help him figure out his feelings and then what to do with them.

I guess, that's what I'm looking for.....A plan for how to deal with his emotions. If they don't have expertise with this then, I am concerned that this placement isn't gonna work.

The reality of the situation is, there is probably no environment in this world which will not cause him to have a meltdown for one reason or another.

What specifically does he have meltdowns about though?

As far as identifying feelings, a lot of times kids actually know their feelings but they feel overwhelmed when they try to explain them, frequently as a result of having tried to explain them before to have adults brush them off.

An example would be that boy who is in red because he can't stay awake in school trying to explain to the adults that he can't stay awake because he can't sleep at home. If an adult explained this..."I'm sorry I'm just so exhausted, I've only gotten two hours a sleep a night for the past week because (whatever)" it usually elicits empathy, understanding and respect for the situation. Reply: "Oh God, I remember when my daughter was little I only got three hours of sleep a night. Try to get some rest this weekend!"

But this is how it usually goes for a child.
Adult: Jimmy you're on red.
Jimmy: But I'm really tired and I can't help it.
Adult: Well go to sleep earlier.
End of conversation.

Adults just don't really respect

This is a private school which is paid for by the district, so they don't have the same constraints about what they have to do. If he isn't a fit for thier program, he isn't a fit. I have spoken with the teacher about what I think he needs and after a recent very scary blow up, I asked for a meeting to discuss the emotional "plan". It turns out that they are scheduling a full IEP meeting now. I would have preferred to have a 1st informal sit down, but, whatever, I am fine with an IEP.

His stress is absolutly impacted by what he perceives as the unfairness regarding the other children because then it feels like it could happen to him at anytime (and he can't stand unfair!).

I'm not sure if my suggestions would help but I'll try. First, he needs to have the option of a quiet space. So, for those times when he's feeling overwhelmed by what is going on, he needs to be able to go somewhere quiet where he can decompress. Maybe punch some beanbags, read a book, play with a Nintendo DS or whatever. Does he know when he's feeling stressed out? My son doesn't feel it coming on, so for us, even though he has a place to go, he doesn't know he needs to. Second, I don't think it's right to put a child with AS in with ED students. That is a recipe for increased anxiety. I would document everything you are seeing at home every day. If your son is threatening suicide, I would think that is something they should take very seriously. Can you hire an advocate? Perhaps you could find an appropriate private school and see if you can get them to pay for it. You're very smart to video tape the meltdown....I would insist on showing that during the meeting, but I wouldn't show it first. I would hear them out first and use that as ammunition....to prove that what they are doing now is just not working. Document the correlation between increase in meds, weight gain, increased meltdowns all with the ED class placement. I think if you go on ivillage, there's an IEP parents board. They might be able to help you in this department. I hope you figure it out.

[quote="Kailuamom"
My child is listened to. I have learned to start listening for stuff he's not saying in words. It's not that he's telling us and we're missing it - he needs to learn how to know, then he will learn how to tell.

It's more complicated because he can talk about guitars or song lyrics at an adult level, he doesn't have a pedantic speeking style. This tricks those that don't know a lot about AS to assume all is well unless he says something.[/quote]

I meant he might not be telling the school for such reasons. I didn't mean to imply that you didn't listen to him.

What does he do during a meltdown that he doesn't know he's doing.

We have a similar problem with my son, except he actually has gotten in some trouble. He's gotten two referrals this year (in my opinion, one justified, one not) and he's terrified of getting more referrals because he thinks he will be expelled. He won't, but it's his fear.

SO.... what happens if the kids drop a level or are on red? what does that truly mean? Perhaps you have, but unless I missed it, you haven't told us what that means. He's afraid of the repercussions of the red card, but does it mean he's kicked out? Does it mean detention? Surely these other kids aren't being taken to the dungeon and being beaten... so what does he think happens to them? Perhaps just talking with him about it will help easy his anxiety.

If it's detention, maybe just saying, "Hey, sure you don't want it, but really it's no big deal." (I spent most of my childhood in detention, and I turned out just fine ) I'm sure there is some sort of progression of punishments... Just talk to him about it... Everyone screws up sometimes.. On occasion is no big deal. Maybe even sitting with the teacher and talking about these things with him will relieve some of the stress.

I'm just thinking that with my son, it was the "BIG UNKNOWN" of progression that he feared. He wrongly jumped to the conclusion that he would be kicked out of school.

It's not that he doesn't know when he's in a meltdown, its that he doesn't know when the overwhelm or anxiety is starting him on the path toward one. When in a meltdown, he has run into traffic, broken windows and gone for the shards of glass to hurt people or gimself. At fiirst we thought this was happening out of the blue. Then I spent time here and everyone told me to look closer and I have found that the stuff that bugs many on the spectrum, seem to be happening around when meltdowns happen.

Blue means you go on field trips, Mr. George surprises the kids with special treats randomly, you get 1st crack at doing all the good stuff.

Green - no field tripsor treats, but no restrictions, you can participate in all school activities.

Red - no activities, different lunch from the others, plain cheese sandwich, I think thats it. Not the end of the world and we have talked about it. However, they put such emphasis on the levels, that he equates them as worthy/unworthy and good/bad. The idea that you do the best you can, and the when something terrible happens (meltdown) you get publicly punished - just too much for him.