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InThisTogether
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11 Oct 2013, 7:18 pm

I'm bumping up against it again.

You know the one...it's between "not wanting to push too hard on something that can't be helped" and "dropping my expectations too low and not helping him succeed."

There are just certain things that I can't tell if my son really can't help it, or if he really is lazy and not even trying. For example, we have a folder system worked out for school that anything he is handed in school is supposed to go into one black folder. He doesn't need to worry about figuring out where it belongs in class. We can do it at home when he is not feeling pressed for time. At home it is sorted and put in the respective place in his binder for the class. He also has one red folder that has all of his homework in it. So when he gets to any given class, all he has to do is look in the red folder to find his homework. It will always be right there.

Yet...random papers are shoved into his jacket pockets, the bottom of his book bag, inside of books, in his pants....everywhere but the black folder. And half of his homework is still not turned in. Even though all he has to do is get to class, open the red folder, and check for homework for that class.

How difficult can this be? If I confront him on it, he cries and says that everyone is putting too much pressure on him.

How can "put all papers in the black folder and check your red folder for homework" be too much pressure for a 12 year old boy with above average intelligence? I am not be facetious. I really don't get how that can be too much pressure.

I am finding myself getting annoyed by many of his bouts of crying because I am starting to wonder if he is playing me. I feel like he has realized that if he cries, I back off. I mean, it used to be that he only cried when he was really overwhelmed. So I would back off. Now if I ask him why he hasn't brushed his teeth, he will cry.

I know none of you can tell me where the line is. I guess this is more of a vent and an invitation for someone to say they know exactly how I feel.

I am exasperated.


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11 Oct 2013, 7:22 pm

did you choose the folder or did he?

It would be better to try and figure out what kinds of prompts he responds to without having to think too much. There may be something off putting about the black folder or it may be that it's just too much hassle to try and remember it, think about where the folder is, locate the folder, open the folder and put the stuff in - this is all very demanding for a brain that doesn't want to do it.

I know plenty of adults who cannot cope with that kind of instruction and most of them have PhDs.. :roll:



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11 Oct 2013, 7:38 pm

leafplant wrote:
did you choose the folder or did he?

It would be better to try and figure out what kinds of prompts he responds to without having to think too much. There may be something off putting about the black folder or it may be that it's just too much hassle to try and remember it, think about where the folder is, locate the folder, open the folder and put the stuff in - this is all very demanding for a brain that doesn't want to do it.

I know plenty of adults who cannot cope with that kind of instruction and most of them have PhDs.. :roll:


He helped me build this system last year. Last year they started doing the "each class has it's own folder and/or tab in the binder" thing and he really could not handle it. Trying to figure out which folder to use or to open and close the rings in the binder to put papers away was just not happening for him. He would start class anxious because he was already dreading having to put everything away at the end of class. Nothing was ever in the right binder and he could never find his homework. So we decided the two folder method would work the best. Red and black are his favorite colors. Red reminded him of hot, and turning in his homework is a "hot" item for him, and black reminded him of the "black hole" we were trying to avoid with all of his notes, sheets of homework, and handouts.

If it's "just too much hassle to try and remember it, think about where the folder is, locate the folder, open the folder and put the stuff in" then really, what the heck are we supposed to do? He needs to be able to get his notes and homework home in one piece, and he needs to be able to turn his homework in. He carries one bag to class with him all day. Everything he needs is in that bag. How hard can it possibly be to open the bag and get the folder? I mean, really? Can it possibly be that this is really too much to ask of him? I just find that so hard to believe.

I try to sympathize with him, and I am largely sympathetic because I, too, have significant executive functioning issues.

But at the same time, it also makes me frustrated because the truth of the matter is, unless he wants to hold a minimum wage job for the rest of his life, he is going to have to find a way to pull himself together and compensate. Yes, staying even moderately organized at work is probably at least 5 times harder for me than most of my coworkers. But you know what? I have to do it. I have to find the tricks that help me compensate and use them. I have to put forth the effort, even though the effort I put forth is more than everyone else's. I can't just sit there and say "boo hoo! my brain isn't wired for this!" I have to adapt. Just like people with lower intelligence levels need to find ways of adapting to things that I find quite simple.


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11 Oct 2013, 8:13 pm

InThisTogether wrote:
Can it possibly be that this is really too much to ask of him? I just find that so hard to believe.

I am sorry that you find it hard to believe but yes, it really can be too much to ask. I am so very sorry to have to say this to you, but you sound supper stressed and if you are stressing At him, it will make him even less able to function. That's how this thing works. Believe me, I don't think any of us likes that part.

Quote:

I try to sympathize with him, and I am largely sympathetic because I, too, have significant executive functioning issues.

But at the same time, it also makes me frustrated because the truth of the matter is, unless he wants to hold a minimum wage job for the rest of his life, he is going to have to find a way to pull himself together and compensate. Yes, staying even moderately organized at work is probably at least 5 times harder for me than most of my coworkers. But you know what? I have to do it. I have to find the tricks that help me compensate and use them. I have to put forth the effort, even though the effort I put forth is more than everyone else's. I can't just sit there and say "boo hoo! my brain isn't wired for this!" I have to adapt. Just like people with lower intelligence levels need to find ways of adapting to things that I find quite simple.


You are frustrated and worried for your son's future, this is understandable. However, you cannot force him to function well just because you want that. Even if he is just lazy, that's too bad. You could try taking away privileges as punishment and endure the meltdowns until you can't take it any more and have to revert back to whatever was at least working to some extent but I really wouldn't recommend it. I am sorry I cannot be of more help, I am not a parent. Perhaps you could adapt some of the strategies you use to cope at work to dealing with your son? You used the expression 'backing off' twice in your first post and how annoyed you are with him - I don't think this is helpful for you or the situation. Do you have access to any specialists in dealing with Aspergers who may be able to provide support for you and/or your son?



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11 Oct 2013, 8:43 pm

Yes, I am stressed, and no, I don't stress at him. In fact, sometimes I think that is the problem. I think I back off when I should be pushing. I think maybe if I actually yelled at him or took privileges away, maybe he'd realize this is serious. Maybe if I stopped trying to always be the supportive mother and made him take some responsibility, he'd be more responsible. But because I was pushed as a kid over things that I really couldn't help, I think I am too hesitant to push. And that is what I mean by "the line." If you ever become a parent you will probably understand it. I know I never did before I was a parent. Sometimes you only know in hindsight that your kid was capable of more and you actually held them back by not expecting more. My son has so much potential. I do not want to look at him as a young man and realize the reason he cannot have the jobs that he wants (which all require a college degree) was because I never held his feet to the fire and forced him to learn the skills he needs to learn in order to complete college because I was afraid of pushing him. If you were to ask either of my kids, they would both say that I am "strict," because they recognize that I have more rules than many of their friend's parents, but they would also say that I am "nice" or "kind" because they really hardly ever get punished and I think they know their peers get "in trouble" more often than they do.

The strategies that work for me at work will not work for him, because we organize differently. We already went through a period of me trying to impose my strategies on him. It didn't work. So we moved away from that. And no strategy will work for him if he doesn't try. And that is why I think I am so frustrated. I do not think he is trying. In fact, if you ask him if he is trying his hardest, if he is calm and not in mid breakdown, he will say "honestly, no, I'm not. I just don't want to do it because it's too hard." If you ask him in mid breakdown, he will insist that everyone is pushing him way too hard.

He doesn't have Aspergers. He has ADHD and NLD, and the strategies we have tried are what was recommended by the professional (who is actually quite good) who he sees. The fact that he doesn't hold a diagnosis of AS is not really relevant for issues like this though, because his level of executive dysfunction as a result of his ADHD is higher than many kids on the spectrum. He is really impaired. More than his sister and she is diagnosed with ASD.

I appreciate your input, leafplant. And I appreciate your lack of judgment of me. I know that to a non-parent, I probably sound like a giant witch. With a capital B.


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11 Oct 2013, 9:08 pm

One of the things you said InThisTogether is that your son, though smart in many ways, is very impaired. So I would ask the question how can the school help him? If he is classified they really should and if not, they might still.

I would also think about what your son can do in terms of organizing on his own at home. If you or someone needs to be there and take him through it to organize things, he will probably need a human being to help in school, right? And if he can manage that level of organization without help, at home, maybe he can do more than he has been.

I wouldn't get too discouraged though about the future, you never know, this might be a chance for him to get some help learning new skills to help with organizing.



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11 Oct 2013, 10:44 pm

ADHD is so different really. It sort of looks similar on the outside but from the inside it is different. (although if his sister has ASD and you suspect yourself, the chances are he would have it too as it is genetic). I think ADHD is a more chemically influenced but either way - have you tried gluten/diary free food on your kids?

Well, now you have put it like that (and I am so glad you don't stress at him/them, although if you get this stressed out I hope you find a way to deal with that, it can't be feeling very nice for you), I would suggest some gentle pressure may not be completely out of order. But if he is saying that things are too hard, than you need to dial it waaay down until it feels 'kind of hard but ok I guess for now' and work up from there slooowly. And you are entitled to use reinforcement, either positive or negative, as long as they are right. In other words, don't do like my mother did - sending me to my room when I was naughty - to me it was like an unexpected present. lol

And as you are already being super patient, just carry on with that, because it's not going to be the case of easy progress where he suddenly starts getting it all right all the time.

Also, I am surprised you don't have any home/school help for your son already, is this normal where you live?



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11 Oct 2013, 10:46 pm

My thoughts: I don't think he has any incentive to screw it up on purpose. What I think based on my memory of this sort of thing, is that he is rushing at the end of the period to finish something, get something turned in or close his book, whatever and he has brain flatulence and just hurriedly shoves papers wherever, so he won't forget to put them somewhere. I always had trouble with that kind of thing and always took longer to get from class to class than most other kids, even though I knew where I was going. So I wanted to get out of class without dawdling too much, when it was already taking me a long time to get out of class. I had trouble just navigating through the swarms of humanity in the hallway and needed to hurry especially bad was going to P.E, where I also changed too slow, too. It is harder than you may think.



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12 Oct 2013, 6:55 am

ASDMommyASDKid wrote:
What I think based on my memory of this sort of thing, is that he is rushing at the end of the period to finish something, get something turned in or close his book, whatever and he has brain flatulence and just hurriedly shoves papers wherever, so he won't forget to put them somewhere. I always had trouble with that kind of thing and always took longer to get from class to class than most other kids, even though I knew where I was going. So I wanted to get out of class without dawdling too much, when it was already taking me a long time to get out of class. I had trouble just navigating through the swarms of humanity in the hallway and needed to hurry especially bad was going to P.E, where I also changed too slow, too. It is harder than you may think.
^ THIS.

InThisTogether -- I was puzzling about the 'how' as well, but depending on how stressed your son feels transitioning from one class to another, the hustle-bustle and the fact that there's no set time to put his stuff away at the end of class may well factor into the problem.
I think the approach you've chosen (one binder for homework, one for everything else) is the best thing you can do at the moment. I don't know enough about the US school system to say for sure, but going on my own experiences, it seems sensible.

Do you think you could ask him to at least sort the sheets of paper into the right binders after he gets home from school? Incentives like that might help (and you could help him figure it out if he has trouble).

It took me until I started university to figure out that individual binders and notebooks for different classes just won't do for me (which is why my note-taking in school was horrible; I kept bringing the wrong notebooks, leaving space for 'missed' sessions that I never filled in, etc) -- I ended up with ONE spiral-bound, pre-punched, perforated notebook that I used for all my notes and only really took them out and grouped them together in subjects at the end of the school year, before exams started (if at all).

However, handouts were and still are a nightmare -- they're never punched, so I'd have to carry a hole punch (which I didn't have) or figure out a way to carry them loose. I got a folder to carry loose sheets of paper, but still ended up with half of them stuffed into my notebook ... and I could only really order them properly if I remembered to write the date on which and order they came in onto each sheet. :?



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12 Oct 2013, 7:03 am

With his level of executive dys-function I am surprised that the school cannot make accommodations for his ADHD. Can you schedule a meet with his teachers to ask them to help you out and let them know what steps you are taking but your son needs extra help on their end. To ask him specifically for his homework (I presume that you help him to put his homework in the folder before he leaves school), and to give him a little extra time to put his papers away at the end of class. If they can make accommodations for kids with disabilities to take extra time on exams, then I don't see how this is any less important.



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12 Oct 2013, 7:52 am

Thanks for the input, everyone!

He is in the school's Response to Intervention Program (http://en.wikipedia.org/wiki/Response_to_intervention). He does get help and support at school. The problem is, he doesn't use it. He does not follow through on any suggestions. He does not use any system presented to him. He had a daily 1:1 for organization last year, along with an additional 1:1 every other day for building organizational skills, but he implemented NOTHING of what they asked him to do. The teachers do ask for his homework and he tells them he doesn't have it, even when he does. Basically, unless someone puts his papers away for him and physically goes to his folder and removes his homework for him, it does not get done. Now, he is impaired, but he is not THAT impaired.

ASDMommyASDKid...what you are describing is exactly why we switched it to him having only one folder...the black one...to put EVERYTHING in to at the end of class. For all of his classes. Everything. Notes, homework, handouts, any piece of paper he is handed in school goes in that one folder. In no order. Just in the folder. Then we sort it out and put it where it belongs at home. But often, the black folder is empty, and things are just randomly (and lazily, I suspect) shoved wherever he shoves them.

Sometimes I get the impression from him that if something is not easy, then he concludes he should not have to do it. It is as if he is averse to effort. Any effort at all. And I sometimes feel like this is my fault, because I have always worked so hard to accommodate and make things easier for him. It reminds me of when my daughter was a toddler after her diagnosis. I used to say "no, she doesn't really tantrum much at all anymore. That seems to be gone." Then I realized the reason she never tantrummed anymore was because the entire family's life was built around doing everything humanly possible to avoid any kind of meltdown or tantrum. Someone gently questioned me whether this would actually prepare her for life, and I realized it wouldn't. So we had to start the crazy process of teaching her that the world does not revolve around her. I had to resist the urge to circumvent every little possible issue for her. Her tantrums increased. I started to learn the difference between a tantrum and a meltdown, and we started teaching her ways of dealing with life's truth: sometimes things do not go the way we want them to and we need to adapt. Over time, she developed coping skills and strategies. And she is much better for it. I almost feel as though my son needs to learn: some times things may take effort. You may have to actually try harder than other kids do. But that doesn't mean you are not expected to put forth the effort. You have a disability, but you can learn to compensate for many parts of it. But it's never going to come naturally and be easy. You are going to have to work. Period. Stop expecting other people to do the work for you.

Regarding ADHD and ASD being different, I am not so sure, to be honest. At least not the ADHD that is in my family. Perhaps like ASD, there is more than one kind, but they are all lumped together. I do not know. My son's NLD presents like "mild" AS, but the truth is, I cannot always tell where the ADHD begins and the NLD ends. I, myself, am not on the spectrum, though I do have traits to some degree. But I certainly have ADHD. And I see basically no difference in the executive functioning issues that I face compared to what people on the spectrum say that they face. I think that ADHD is misunderstood by many and basically seen as "hyperactivity" or "impulsivity" or the other things that you "see" in the person with ADHD. But when you look under the surface, it is remarkably similar to some aspects of ASD. And the "hyperactivity" part is the least debilitating part. It is what goes on under the surface that no one sees that is so difficult. I don't think it is "chemically influenced," but rather--like ASD--the result of atypical wiring. I kind of see ASD and ADHD as siblings or cousins, not as unrelated or different.


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12 Oct 2013, 9:09 am

I get frustrated when I want the problem to be won't and it's can't. So I have to ask, I thought response to intervention was a temporary thing to try to resolve problems without providing special education services. I thought it was supposed to be tried and if there is t adequate progress something more implemented. To me, he does nothing asked of him in a child who has organizational problems that are severe cries out for more adult effort to find and implement solutions. Wrightslaw.com helps me when I am confused. They're not recommending being adversarial and helps with ideas.

In the end though if your child won't or can't if you're frustrated and your child is impaired, pushing harder on him, the weakest link, it's hard to get to work, because you are upset. Maybe there's nothing wrong if you need teacher help to get things started. It's their job too.



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12 Oct 2013, 9:53 am

See, but this is where I am stuck...

Because what if it isn't that he CAN'T, but that he WON'T? Because if it is a matter of WON'T, giving him extra support is not going to solve the problem. Because if the issue is a matter of WON'T, the problem is that he is not properly motivated and is not taking responsibility for his own learning. If it is a matter of WON'T and we continue to do it FOR him, then we are only reinforcing his belief that he shouldn't have to put forth extra effort, because somehow he is entitled to have everything be easy.

He is at the age where he is going to have to start taking more responsibility. He is not a little boy anymore. There are certain things that I will never expect of him because it is not possible. I will never expect him to have neat handwriting. I will never expect his room to be organized and neat. I will never expect him to remember his after school routine without a posted schedule and reminders. These things are not an issue of WON'T. They are an issue of CAN'T. He has fine motor issues and executive functioning issues that make organization unnatural to him. But I do expect him to write as neatly as he can (even though it never meets anyone's standards of "neat.") And I do expect him to put his clothes in his hamper so they make their way to the laundry, and make sure that things that can rot and spoil are not in his room. And I do expect him to use the checklist we made for his after school routine.

I don't know...I am still not convinced...

I do believe that he CAN'T organize himself the way most kids his age do. I remember last year they brought in an example from a highly organized girl in his class. And all I could think is "Wow, that is beautiful, but there are way too many "wrong" places to put things in that system. He'll never be able to use it. He will be paralyzed by all of the possibilities."

But I am not convinced that he CAN'T use any system at all to manage himself. Perhaps I have mislead in the way I described his level of impairment. He is quite notably impaired in many executive functioning skills. But I do not believe his ability to learn compensatory mechanisms is impaired. I suspect his belief that he shouldn't have to do anything that requires effort is what is is at the root of his "impairment."

It seems like the general consensus here is not to push him. I respect and appreciate that. But, when I say "push," I do not mean punish. I do not mean harangue. I do not mean belittle or disrespect or ride incessantly. By push, I mean set reasonable expectations that scaffold and build, and that have natural consequences if left unmet--and that will very likely require a level of effort that he does not want to commit to. I am not one to always follow the "general consensus" and the more I think of this, the more I am starting to think I am erring too far on the side of caution. I think he probably is much more capable than his current level of functioning suggests.

I think I am on the side of the line that involves not appropriately challenging my child in fear of "pushing" him. I think it is probably likely that my desire not to "push" is probably preventing him from reaching his maximum potential. I think he probably needs me to to push him. I think in this particular case with the red and black folders, I have held back too much.

But there are many other "lines" out there. Where I fall on those, I still have no idea. But such is the life of a parent with a kid who is high functioning, but has significant impairments.


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12 Oct 2013, 10:22 am

Go with your instinct and push. I just think that a child in response to intervention who is not progressing might need adults to scaffold more so he can be self motivated, or pushed, to be successful. Pushing a person to do their best and it's still failing is very unmotivating. Sit with your son, watch him and do it with him, see where he is and insist he do more if you like, but with you or someone making sure the effort is successful. He may try harder, he may learn something and so may you. Most if all don't do it if it makes you crazy, back off and maybe watch someone else. Even maybe hire a neighborhood kid if you can once or twice so you can watch, it's much easier to judge if you don't have to be the one pushing. He may do more that way, too. Be creative, try something new!! And then go with your instinct, but not if it makes you crazy!



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12 Oct 2013, 11:18 am

Thinking outside the box...could we eliminate the transport of papers entirely, by using a phone or digital camera? Every paper he receives in class, he would take a picture of, and print it out at home when it was time to do the work. Every piece of homework, take a photo as soon as the page is complete, and email it to the teacher. Take a picture of the list of assigned problems if the teacher writes it on the board, or of a post-it with the instructions if they are given verbally.



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12 Oct 2013, 11:18 am

Just maybe you should focus on motivation. Looks like you are saying he certainly is smart enough to know what you require him to do, he just doesn't do it, and will give any excuse.

What I'm learning about ADD is that it's a motivation issue. As you and I know, it's extremely frustrating to be ABLE to accomplish far more than you are motivated to do. Unfortunately lack of motivation wins out.

How about a system of rewards that build up. Reward all the little tasks involved. You can start with tiny rewards (I mean pennies) for every sheet of paper he brings home, no matter what state is comes in. Reward more for the papers that make it to the black folder. Eventually remove the reward for the papers in the jacket pocket but instead give a reprimand for it not being in the folder. Then adjust your system to reward placing the correct papers behind the correct tabs. (Kids usually have tons of time at lunch or while waiting in lines to put papers where they belong, they just want to socialize instead.) Then move your reward system to reward once a week, and then once every two weeks for having a clean notebook. Might take two years, but I'd have long term goals in mind. Sounds like at least he is bringing home his papers.