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MrXxx
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10 Sep 2010, 11:23 am

that just don't seem to get it.

Long rant! I'm not so sure I'm looking for advice here, but if you feel so inclined to offer any after taking the time to read this, I won't object. I can't promise I'll take any of it, because this has been going on for a long time now (years), and at the moment I've kind of made up my mind what to do about it already. I think I'm really just sharing things maybe a lot of you are going through yourselves. At this moment, I think I'm just wanting to hear from people who can identify. But in a few hours, or tomorrow, I may be ready to hear any alternatives you have to offer, so if you want to share, go ahead.

Keep in mind though, we are a spectrum family. I and all of my kids are on the spectrum. My wife suspects she is, and probably is. This means the dynamics in our family are very different from "NT parent - Spectrum kids" dynamics. I'm not saying I don't want to hear from NT parents of spectrum kids. I'm not saying I don't want to hear from spectrum parents of NT kids. Just keep in mind that if you are in one of those two categories, the dynamics in your family are very different from ours.

I'm an Aspie. Self diagnosed, being tested and very confident I will be DX'd very soon. I have two sons diagnosed on the spectrum, and a third (oldest, 14), who has been DX'd ADHD, tested for ASD (negative even though he scored low on the spectrum ~ 10th percentile). My wife speculates she may be on spectrum as well (her brother has AS). Needless to say, we have a very complicated communication dynamic happening in our home. My three sons are each very different from each other, different from me and their mother (though my twelve year old is more like me and more AS than all of us). We are all high functioning. All three kids are smart, the younger two are very deep thinkers and grasp concepts that surprise even me on a regular basis.

They are all on IEP's. The older two, now in 7th and 8th grade, are apparently having a lot of problems getting homework done. I say apparently, because I knew my oldest was, but did not know my youngest was having trouble (again).

I discovered he is apparently not doing all of his work, by means of a phone call today. And here's where the real problem I have never seemed to be able to solve, comes in.

My oldest two have a case worker at school. She is one of those very "matter of fact" people. When I first met her, I was pretty sure I didn't like her. It was just vibe, but vibes like that don't often misguide me. Nevertheless, whatever vibe I get from people on first meeting, I always give them the benefit of the doubt. When the vibe is negative at first, and I give them the benefit, I usually end up realizing over time my first impressions were right. On rare occasions, I end up pleasantly surprised.

In this case, I'm afraid now I may have been correct in the first place. This woman (I'll call her Sue), is very "matter of fact," speaks quickly, gets to the point, and often covers three to four topics in a matter of a couple of minutes. I need my information fed to me slowly. One bit at a time. If somebody needs me to make a decision based on information their feeding me, I need to hear one issue at a time, need time to digest it, consider all options and implications, then reach a decision.

Sue calls me on occasion about issues they are dealing with regarding my kids. When she calls, it's always three or four issues at a time, often involving both of them. She fires all the information, and questions at me rapidly, and then expects a response from me right away.

This has been going on for a year. At every IEP meeting, I have told her and everyone else there, or over a year now, that I am on the spectrum. They know I am self diagnosed, but they also know I have been planning to be evaluated for quite some time. Quite a few people at these meetings who work a great deal with spectrum kids have said at those meetings, they see it in me.

When Sue calls, I feel like I'm being run over by a steam roller at high speed. She basically inundates me out of the blue, then expects answers to four or five questions I haven't even had time to THINK about, on the spot.

What makes me crazy about these situations is that a lot of what she tells me about in terms of problems they are having, seem to come right out of the blue. The way she brings them up always sounds as if she feels we already know there is a problem, but we NEVER DO know about most of them until she calls. Often by the time she calls, the problems have already been going of for about a week or more.

Sue though, is but one cog in the machine (though she is the most important one on a daily basis). The problem she most frequently calls about is HOMEWORK not being done.

For the past two years, homework at our house has been an all night, mostly losing battle. From the moment the boys got home from school, until bedtime at 8:00, it was a minute to minute battle to get them to sit down and do their work. Getting them to sit is about as far as we got most nights. Unless one of us (my wife, because we tried me, and neither will do a damned thing if I try to help), sits with them, verbally going through each and every question, nothing gets done. (Usually). For two years, WE HAD NO LIFE!! !! !! !! !! And when I say we had no life, I mean we couldn't even get normal things done around the house. Our house became a disaster because we were spending every minute of every afternoon and evening chasing them down. As soon as we'd get one situated to start working, we'd have to go find another. As soon as he sat down, we would notice another had disappeared. Add all that to the fact that one would not work at all without one on one help for every question. Add to that the fact that not one of them picks up after themselves (clothes and laundry dropped wherever, dishes left wherever, with food in them, etc.

Now, if all that isn't enough, we finally get them all to sit down and do their work (actually we tried to just tackle them one at a time), then open up their notebooks to see what they have, and half the time, we can't understand the damned requirements for the assignments! More often than not, there are NO written instructions. Our kids CANNOT remember verbal instructions given in class, NOR can they write them down in a way that either they or we can make any sense of. Feeling our frustration yet? I'm not done. Now and then we find papers with printed instructions for their assignments. More than half of those make no sense to us. We can't understand them, and neither can the kids!

Not understanding them though, has nothing whatever to do with my lack of comprehension. I do not like bringing this up, but dammit, I have a 140 IQ, and just finished two solid years of college with a 4.0 average! I know how to interpret well written instructions for gosh sakes! It's NOT that we don't GET the instructions, it's that THE EFFIN INSTRUCTIONS (IF THEY ARE EVEN THERE AT ALL) MAKE NO GD SENSE!! !

How the HELL are we supposed to help them out when we can't even understand what they are supposed to do in the first place?!

THEN, we get these calls telling us, "Um.... Your kids aren't doing their homework. What do you think we should do about it?"

We went through this crap for two solid years, since they started getting heavier work loads. This year, before school even BEGAN, we told them we can't do it anymore. We told them the kids need help, and it needs to be somebody other than us. We TOLD them we don't understand more than HALF the instructions the kids come home with.

Over the past Summer, we have had an assistant, paid for by the schools, working with us. She's a psychologist (PhD) from a local psych clinic that specializes in working with kids on the spectrum She has a daughter on the spectrum, 16, and has been through everything we are currently going through with the schools. She technically works for the schools, because they are paying her, but her angle is to work as our advocate. She's awesome. She "gets" everything we are going through in ways no one else ever has. I'll call her Jen.

Jen was at the IEP meeting before school began this year. She had already been meeting with us every couple of weeks throughout the Summer. At that first meeting, two weeks before school began, she stressed that the kids needed one on one help with their homework, that the school should provide, because we are NOT able to do it. As soon as she brought it up, Sue (the case manager) said, "We already have after school accommodations on site." Someone made a note that that was something that needed to be addressed. Right after that, the subject was changed by someone else there, and we never got back to the topic. The meeting was adjourned a few short minutes later. Everyone had other appointments to make. Until today, the subject of help with their homework was not addressed at all.

This morning, I get a phone call from Sue, telling me my eldest is way behind on his work. He has a social studies project (that I knew about, but didn't know any details, BECAUSE THERE WERE NO GD INSTRUCTIONS ~ AGAIN!! !). All I know about it is that he needs to pick a country to study, explain why he picked it, and write down what about the country he wanted to learn. There's a web site where he has to enter the information. THAT'S IT! That's ALL I knew! Well, he picked Canada. But because he picked it randomly, he was having trouble explaining why he picked it. He also didn't understand how to answer what he wanted to learn about it. I spoke to him for a few minutes, asking him about anything he knew about other countries, and telling him those were the kinds of things he could learn about Canada. For everything he told me about the other countries, I said, "Type that in. That's something you can learn about Canada." Then, because as a child I had listened to Canadian radio a lot, and had traveled to Quebec frequently, I told him a FEW things I knew about Canada. I did not know he typed some of that into the web page. But so what? Trust me, it wasn't much information at all. I'm not exactly an expert on Canada just because I've been there. I haven't been there in over twenty years.

So, during this phone call this morning, Sue tells me about the project. She tells me it's a year long project (nice to find that out now, huh? Why wasn't there something sent home with him explaining this?!). She tells me it's supposed to be an independent project. All the work has to be done by him and him alone. (I'm thinking, "Okay...?"). She tells me he typed in some information about Canada, and when she asked him where he got it, he told her I had told him some things about it. Then she stresses AGAIN, that it's supposed to be an "independent project." WTF? I can't have a freaking conversation with my own son about a country I've BEEN to, that he happens to be doing a project about? I never told him to put any of THAT into the page. And if this is a year long project, what the HELL is the big deal? Obviously he's got a lot more to learn about it. I TOLD him I'm no expert on it, and that the information I gave him was to give him a starting point. Those were some things he could look up more information on!

It may help to know that Sue has insinuated before that we have been doing his work FOR him, which is BS. She's been told all we ever do is try to help point him in the right direction. Until the end of last year, he had an accommodation in his IEP. We were allowed to scribe for him because he had a lot of difficulty writing. We told her even though the writing is my wife's, the answers are HIS. Now, we're not even writing for him anymore, and she STILL thinks we're giving him answers and doing his thinking for him.

Frankly I'm PISSED! Insulted and pissed. Right at this moment, I want to call her up and say, "Eff it! YOU get him to do the work. We're not having him do any homework at home anymore." I'm really sick to death of this garbage! Can you tell? Don't worry, I'm not going to do it. I told her I would call her back this afternoon just to get her off the phone. That'll give me a chance to cool down a lot, and figure out exactly what I want to clarify and say. I'll have a barrage of questions for her. That's fair isn't it? :lol:

Anyway, she called to talk about the project, but also wanted to know, because apparently both my sons are way behind on homework (why did they let them get way behind before letting me know?), and wants to know now, right now, if we'd like to arrange for both of them to stay after school starting next week.

"Two days? Three Days? What do you think? Would you like to set that up right now?"

"Well, that has worked for one of them well in the past, and he even said last light he thinks he'd like to. His brother though, is a different story. He's really got to be on board with the idea..."

[interrupting] "So, how about two days a week? You want to make it two days a week and see how it works for now?"

[WTF? Is she even listening?] "I'll have to call you back this afternoon."

This problem with teachers giving out assignments to our Autistic kids with nothing but verbal instructions, or even if they are written, written terribly, really has to stop. I'm sick to death of it. What really pisses me off is that we've brought this problem up numerous times at IEP meetings, and NOTHING HAS CHANGED!

So we deal with piss poor communication from teachers, kids that hardly ever have any understanding of what's expected of them, then get phone calls to tell us they're way behind in their homework. What the hell is wrong with these people?! How many times can we tell them what the problems are before they'll actually LISTEN?!

I've given up. I want nothing whatsoever to do with their damned homework anymore. I plan to initiate communication today. I have a message to send everyone in the schools dealing with our kids.

"Hey people! WAKE UP! Our kids are AUTISTIC! That means you CANNOT rely on them to remember verbal instructions accurately. They need it in writing, AND those instructions need to be CRYSTAL CLEAR, step by step instructions they can FOLLOW. If they are NOT clear, we cannot help you. Oh! And another thing. I've been telling you all for years now, I AM ON THE SPECTRUM. I have just as much trouble understanding the instructions the kids have been getting as they do. The bottom line is, WHAT YOU ARE DOING DOESN'T WORK!! !! Either change it, or deal with the damned problems YOURSELF. I'm done with playing games. If you are still doing things the same old way, and they aren't getting their work done, DON'T CALL ME!"

I was thinking at first of putting it a bit more diplomatically, but I'm beginning to think I might not this time. I've tried that. Diplomacy hasn't worked. The same idiotic problems keep cropping up, and we just don't have the freaking time or emotional energy for it anymore. We don't think we've been heard. Maybe it is time to throw a damned fit. They don't seem to be paying attention to what we have been doing.

Oh, yeah. We've heard the "We hear you" crap so many times now, but the bottom line is hardly anything has really changed. I think it's time to loudly retort, "You what? You hear me? NO, YOU DON'T! IF YOU WERE REALLY LISTENING, SOMETHING WOULD HAVE CHANGED BY NOW! Nothing's changed, so NO YOU AREN'T LISTENING!"

Don't get me wrong. These are all very nice people in many ways. I really think, with the probable exception of Sue, all of them have good hearts and the right motivations, but when you put them all together into this "team," the team is dysfunctional. It's bureaucratic SNAFU at it's finest.

Is there anyone here who can identify with this level of frustration with schools? Any of this sound familiar? Would you, if you had been through this kind of thing for years, feel as if maybe it's time to stand up and SHOUT?"

Whew! I'm out of words for now...

Thanks for reading.


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faithfilly
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10 Sep 2010, 12:11 pm

I read your entire post and definitely understand what you're going through when dealing with school staff. I've raised my children already. I'm an Aspie and so is my son. My daughter is neurotypical. In spite of her being "normal" and intelligent, I had to deal with all kinds of crap from the school system. My husband and I experienced first hand how deceptive and nasty these people can get. That's why as soon as it was legally possible, I withdrew my daughter out of school. The school tried to convince me that she'd be a failure. Ha... she graduated college with high grades, without any help from a school district.

While dealing with trying to please the school in regard to my daughter's schoolwork, my son was going through elementary school. He did not want to continue on with public school into the middle school. My husband and I both knew how much trouble we were in for if I didn't do something. I put an end to procrastinating on the idea of homeschooling and rose to the challenge. Before beginning homeschooling, I made sure I belonged to the homeschool legal defense team. I'm sure that's what caused the school keep their nose out of our business. New York State has been one of the worst states for homeschooling. I learned it's all about money and teacher's pride.

My neighbor has retired from being the principle of the elementary school where my son went. I asked her why no one noticed that he has Aspergers. She didn't like that question. Anyhow, I guess what I'm trying to say is that don't feel awkward about getting tough with school staff. I have also learned about many other horror stories about public schools. It sounds like your observations are precise. You are exactly right in all that you are saying, feeling, and thinking. Stick to your guns. Do not let the school staff ruin your life. When people working for schools are incompetent about helping kids on the spectrum, they should not receive a salary. Because they get paid no matter how bad they are at their job, they have no motivation to improve. Maybe remembering that will help.

Your post reminded me of how important it is to trust in your gut feelings, especially when it comes to your childrens' well being.


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Kailuamom
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10 Sep 2010, 12:38 pm

I think you are spot on with what you are requesting. I would "professionalize" the wording a bit (so it can't be held against you) and add that further communication with you about the children must be in writing. Phone calls are not acceptable and you feel that you and your children are being discriminated against based on your inability to quickly process verbal communication.

I would request in writing that all homework assignments and classroom notes be provided to the children and to you (or wife) via email.



faithfilly
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10 Sep 2010, 12:47 pm

Kailuamom wrote:
I think you are spot on with what you are requesting. I would "professionalize" the wording a bit (so it can't be held against you) and add that further communication with you about the children must be in writing. Phone calls are not acceptable and you feel that you and your children are being discriminated against based on your inability to quickly process verbal communication.

I would request in writing that all homework assignments and classroom notes be provided to the children and to you (or wife) via email.

That's excellent advice! :D


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Mama_to_Grace
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10 Sep 2010, 1:03 pm

First of all you are dealing with a bureaucracy. A bureaucracy who likes to shun their responsibilities and then blame the parents.

I think your letter to the school is a bit unprofessional and will only add fuel to their position that it's a problem at home.

If I were you I would re-word the letter and make it simple: the burden of education is not on the parents. You have tried to institute their homework but the instructions are inadequate. Remind them that it is the SCHOOL's responsibility to educate your child and not yours. That is their mandate. Of course you are willing to help but have not been given the proper tools to do so.

They cannot ask you "What do you think we should do about it?". That is not your job. They are the "professional" educators. You should say "I think you should find a way to give homework assignments that my child can understand and do without complete and utter frustration."



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10 Sep 2010, 1:08 pm

MrXxx, I don't have any advice because we, my 11 year old AS/PDD son and I, have avoided/escaped from this sort of problem by homeschooling most of the time for the last 5 years, but I totally sympathise with the situation you are in, especially the robotic unlistening reactions, and unintelligible/ambiguous/confusing instructions/exercises.

My son actually stuck school last year for almost four months, from February until the end of the year, because we had found a tiny private school, ( which was very cheap because Catholic and subsidised ), and the teachers were wonderful, especially his year-teacher who was also the headmistress; she was "present", "alive", and *listened*, especially and most remarkably, to my son. Despite the fact that he had only ever attended school for a few weeks on a couple of occasions, and done very little schoolwork at home he quickly got the hang of things, excelled in maths, and did pretty well in everything else, except sport! He has just started at "college" or secondary school though, and the problems are already starting, of insanely pointless tasks, unclear instructions, the mass-production factory treatment that we experienced at the last but one school he tried, and he is very *bored*, so I suspect that he will very soon be home*un*schooling again very soon.

I hope that you manage to get your message through to at least a couple of the key teachers ... and I loved your proposed "note", but have to admit that toning it down ever so slightly might be wise if you plan to keep sending your children to school there! :lol Mama_to_Grace's suggestions sound good.

Best of luck, etc. :)
.



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10 Sep 2010, 2:17 pm

faithfilly wrote:
Kailuamom wrote:
I think you are spot on with what you are requesting. I would "professionalize" the wording a bit (so it can't be held against you) and add that further communication with you about the children must be in writing. Phone calls are not acceptable and you feel that you and your children are being discriminated against based on your inability to quickly process verbal communication.

I would request in writing that all homework assignments and classroom notes be provided to the children and to you (or wife) via email.

That's excellent advice! :D


Agreed. I do soooo much better when things are in writing. Of course, I get to throw in the "I'm hearing impaired" card, and that gives my request extra leverage. Still, people are really resistant to it, since the average teacher isn't as used to communicating in writing as a conversation tool. My compromise is to use the email, then, to set up the meeting, and clue me in on what will be discussed. Since I ramble and ramble and ramble when they do get me on the phone, lol, they start to figure out that written is probably better all around.

Today's teachers pretty much all give out email addresses on the first day of school. Use those email addresses.

Our school uses a system called school loop, where teachers post assignments. That helps, too, but posting by teachers is not very consistent.

Mr. Xxx, I hear you on parts, felt very lucky to have a different experience on other parts.

Some general observations, beyond the suggestion from Kailuamom, above:

1) At some point you may have to let your kids fall on their own swords, so to speak. They will not always have you and your wife there to sit them down and make them do the work, and to advocate for them. And, as you have discovered, you can't pick up all the slack. So, you give some long hard thought to what your kids really NEED in the way of support, do what is necessary to provide that, and then STEP BACK. Too much is going on to pick up all their "wants." You can only help with "needs." EVERY middle school child goes through issues with homework, organization, and responsibility, whether NT or AS. Many NT families use 5th grade, immediately prior to middle school, as the "make their own beds and lie in them" year. Perhaps for an AS child, some later year is better. But, at some point, that year will happen. Your child cannot figure out the system unless it does. It is your son's job to ask his teachers for clarification on assignments that do not make sense, to ask if he is unsure when something is due, and so on. I know it can be a lot for an AS child, but at some point they still have to make that transition, just like every child does. Most likely it will be later than with an NT, but it still has to happen. You cannot expect a teacher with 180 kids to know what each individual child needs and to check back on what that child has understood and has not understood; your child must learn to step up and assert for himself. Life skill. Your 8th grader needs to take it on.

2. Set up another IEP meeting for each child and make sure everyone - all the teachers, too - can be there for an hour. Bring a specific list of issues and possible solutions. Kick out Sue if she talks too much; most of this conversation should be between your child and his teachers on how to handle the issues that come up day to day in those specific classes. We had our annual IEP meeting last week, and I confess to being really impressed at how fast this group of teachers came up with solutions for each talking point I had. I could really see the evolution from me and my husband determining our son's life, to us just raising questions, and my son addressing them directly with his teachers. Since the solutions came from the teachers, they are much more likely to stick to them. Since my son accepted responsibility for certain actions (telling the teachers when instructions confuse him, etc), he is much likely to assert himself. OK, lol, maybe I'm dreaming, but for the first time in a long time I left feeling like things were accomplished, even though there was not one official new entry added to the IEP. My son was the same; he left feeling like a school schedule that was completely depressing him the week before was actually doing to work.

3. I've had the same issue with the school not trusting that I'm not doing my son's work for him when I've scribed for him. OT worked with him on transitioning to typing, and he is now fast enough to do all his first line input himself on an alphasmart. The current agreement is for him to work with his academic support teacher on downloading that into Word, and creating a legible document with proper spelling and grammar. Since early last year, I've been out of it. And, you know, it is better all around. My son has trouble doing school work at home work, and won't do one iota more than the minimum; but if this is his assignment for his academic support period, he can actually sit down and go through the tedium of editing. The teachers have gotten used to working with the academic support teacher to decide which written assignments need more work, and what type. It all happens now without anything from me. Again, we won't always be there for our kids, so learning to get what needs to be done through the system, so to speak, is better.

4. Homework should not be a bus to bed process. Get the workload reduced to a reasonable level; that can be an IEP accommodation. In some states it isn't even legal to assign more than a certan number of minutes, and most districts have policies on how long homework should take. Once you are comfortable your kids have work that can be done within 1 - 2 hours should they sit down and actually do it, then put the responsibility on them for getting it done. If they fail to get it done, there are consequences. Real life.

Yes, it sucks that the written instructions rarely make sense. And it sucks that schools can't trust us when we're doing things like scribing. And it sucks that they can't allow enough time for an adequate meeting. And it sucks that homework takes too long, that it serves little useful purpose (if you ask me), and is graded in illogical ways (if you ask me). But, what are you going to DO about it? Some things you can change by getting involved at the right time and place; others you can't. But, long run, schools have less vested interest in solutions that work for your one (or two ;) ) unique child than you do. You have to listen carefully to what is reality, and then provide suggestions for change that seem work-able within that reality. They want to talk face to face? Schedule a time with each teacher and get it resolved face to face.

FYI, I hate managing my own life, much less my son's. Our house is pretty much an AS household, too, except I do seem to have a few solid NT traits that help at key moments. If I see something that has to be changed, I make it change. And I tend to do it in a very nice - but strong - way.


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10 Sep 2010, 2:46 pm

DW_a_mom wrote:
4. Homework should not be a bus to bed process. Get the workload reduced to a reasonable level; that can be an IEP accommodation. In some states it isn't even legal to assign more than a certan number of minutes, and most districts have policies on how long homework should take. Once you are comfortable your kids have work that can be done within 1 - 2 hours should they sit down and actually do it, then put the responsibility on them for getting it done. If they fail to get it done, there are consequences. Real life.


I'm with DW on this one (as I usually am.) The terrific teacher we had for 1st grade had instituted a class-wide policy that kids were to work on each assignment for no more than 30 minutes (she was also the one who started the 504 process for my son, we have her again this year, I'm incredibly grateful.)

I also think that you should look carefully at your IEP regarding these issues - those are your legal rights, after all. If it were me, I'd get Kailuamom's suggestion of having homework instructions emailed to you written into the IEP; it's an extra step teachers may not want to take unless it is required of them.

I don't understand why the school is coming to you about homework, rather than working with the kids directly, as - provided you are not somehow preventing your kids from doing homework (which, of course, you aren't) - the kids are ultimately the ones responsible for it. From what you wrote, it sounds as though they are putting the responsibility on you - and if there is a barrier to homework because of your kids' difference, they are the professionals, aren't they? Shouldn't they be the ones with the strategies and ideas?



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10 Sep 2010, 4:49 pm

ouinon wrote:
MrXxx, I don't have any advice because we, my 11 year old AS/PDD son and I, have avoided/escaped from this sort of problem by homeschooling most of the time for the last 5 years, but I totally sympathise with the situation you are in, especially the robotic unlistening reactions, and unintelligible/ambiguous/confusing instructions/exercises.


We actually tried home schooling with my oldest son a couple of years ago. We had placed him in a school that specialized in behavioral problems. He did well there for one year, but in the second year, their methods were actually causing him to get worse. Long story. I pulled him out near the end of the year, because they were not listening to anything we told them. Refused to believe he was on the spectrum, and treated him as NT, which was really, really stupid on their part. Home schooling was an utter fiasco. I even gave him a few months off just to detox. But he would not do any work at all.

Eventually, he wanted to go back to public school for several reasons. He was allowed back in, and this time, the only stipulation for the first six months was that no matter what he did, as long as it didn't disrupt the class, he could stay. He agreed. Previously, if he even so much as put his head on the desk, teachers wouldn't tolerate it, would intervene, and it escalated from there every time into total shutdowns.

Bottom line is, we did try home schooling with him. It just didn't work at all. And based on how his brothers deal with us helping them with homework (they don't let us), they wouldn't do anything if we tried it with them either. So we're kind of stuck dealing with public schools now, like it or not.


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10 Sep 2010, 6:35 pm

DW_a_mom wrote:
LOTS 'o good stuff! :lol:


Yes on pretty much everything you said DW.

The main issue is getting the stupid, "What do you think we should do?" phone calls.

As for falling on their own swords, we do that too, when it's obviously due to their own faults. Unfortunately, a lot of why they miss stuff or don't get it done right is due to poor communications from the school.

I realize under most circumstances kids their age are expected to make sure they have clear instructions, and to advocate for themselves if they feel they don't. In my son's situations, as with my own when I was in school, most of the time it's a situation of not knowing what we don't know.

I remember having this problem at school, and have had it at almost every job I've ever had as well. If you think you've got the instructions correct, you think there's no need to ask for clarification.

"I know what I know, and have no idea what I don't know."

We all need crystal clear, step by step instructions for everything, in writing. If we don't have it, there is almost always a misunderstanding. At fifty years old, I still need everything that way.


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10 Sep 2010, 6:51 pm

Kailuamom wrote:
I think you are spot on with what you are requesting. I would "professionalize" the wording a bit (so it can't be held against you)


That was just the gist of what I would have liked to have said in the heat of the moment, but it is, in essence the "grand message" they need to get, but of course it'll be worded much more politely, but with strength. :wink:

Kailuamom wrote:
and add that further communication with you about the children must be in writing. Phone calls are not acceptable and you feel that you and your children are being discriminated against based on your inability to quickly process verbal communication.


Spot on. That's already in the letter I've written. No more calls unless it's an emergency or urgent. I want it writing also because I want a record of it. And, yes, I did explain none of us are any good with verbals, and why. (Why is it that even though it's IN their IEP's, we have to keep REMINDING them we're on the spectrum, and what that means?)

Left out the term discrimination though. I'm saving that one in case I really get pissed off. This morning was just another big bump.

Kailuamom wrote:
I would request in writing that all homework assignments and classroom notes be provided to the children and to you (or wife) via email.


I have actually requested this, and not gotten very far. Case managers and higher I've had no problems with, but teachers are still living in the eighties. They have assignment web pages, but most are blank or the information is even more useless than what we already have. It's this part of the communications link (teacher to parent) that needs improving, and what I'm trying like heck to get somebody there to do something about. If it doesn't change soon, that word they dread so much (discrimination), will begin to show up in messages.

I am quietly on the warpath, but I don't want to use the big guns until I really need to. Not quite there yet, but getting damned close.


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10 Sep 2010, 9:03 pm

It's so hard!

I think it is important for them to know you know about the big guns. You could say something indirectly like, Some of the advocates I have spoken with are concerned that this is discrimination. I am sure you wouldn't be doing anything like that, but we want to make sure it wouldn't look that way.

I have a terrible time remembering verbal communication, so at work, I make people email me even if they are sitting next to me. I need a trail, so I don't forget. It also covers my backside, but that's not what I say, I just say I can't remember it if it's not in writing.

My kids schools have these smart boards the teachers use now - everything that is written on the board can be printed. It makes it so teachers can do it how they always have (on the board), and then hit print. If their classrooms are not equipped with that, I would ask for it.

BTW - I hate the calls home, how do we handle...... If I knew, we wouldn't be having the problem, right?



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10 Sep 2010, 10:48 pm

Hi Mr Xxx, nice rant sir :thumleft: You have very well articulated things I have been feeling for years, I can definitely relate. Dealing with the public school system is like: :wall: I have some suggestions for you to consider:

- First off, don't tick off the school staff, as inept or uncaring as they may seem, you still have to deal with them. Better to save the rants for here. In fact, be extra nice to the people who are most infuriating.

- In terms of dealing with the lady who covers many topics in one sentence, I've had to deal with this type of person too, and my suggestion is when she calls, ask her to wait a moment so you can get a pen and paper to take notes, then listen and write down her points, and then ask questions about each point. This will give you a little time to gather your thoughts. Regarding any decisions, you could tell her you'll have to call her back later with a decision because you want to talk things over with your wife and kids. Basically, take control of the conversation by taking notes, asking a lot of questions, and not committing to anything until you call her back.

- Consider adding the following accomodations in the IEP:
All school assignments to be provided by the teacher in writing.
Extra time to complete homework assignments.
Limit of one hour of homework per subject per night (DW_a_mom has mentioned this one before, maybe she could elaborate)
Grades to be based on in-class tests, and not on ability to complete the homework.

- Increase communication between you and the teachers, so you can ask questions about assignments.

Please understand, that even with these things...we still struggle in school and ultimately the school staff will not do anything out of the ordinary to help. The burden of the work has always been on my son and me, no matter how many accomodations we have gotten and no matter what strategies we tried to "negotiate" with the school. There is no negotiating. They do things they way they do it, and there is very little one can do to change or influence the system.

I understand the purpose of your post was mainly to blow off steam, and not ask for advice. Bottom line is, you're not alone...many parents including me feel the same frustrations as you regardless of neurology.

Hang in there! Best of luck! You'll get through it one way or another :D

PS: I've read many of your posts in other topics and appreciate your contributions.



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11 Sep 2010, 1:55 pm

DenvrDave wrote:

- Consider adding the following accomodations in the IEP:

DenvrDave wrote:
All school assignments to be provided by the teacher in writing.


This we've been working on for years. We keep bringing it up, and keep getting nods and people taking notes, but the reality is nothing seems different to us. We're STILL working on getting this problem ironed out.

This is the one thing we need to make clear the next time we meet: If this does not change, we can no longer help at all, and do not want to be asked for advice anymore. Since this is so key, and we have brought it up many times, and yes, it is written into the IEP, yet we STILL often can't make sense of any of it, it feels to us as if we ARE offering advice, but it really isn't being heard. Why offer any more?

We intend for this to be the "sticking point."

"Fix this first, then we can move on to other things." If it isn't improved, we intend from here on in, every time we are asked for advice about anything else, to bring this issue up.

"We still aren't getting clear lists and instructions. We can't help you until that changes."


DenvrDave wrote:
Extra time to complete homework assignments.


This is already part of the program for all of them, and is being adhered to.

DenvrDave wrote:
Limit of one hour of homework per subject per night (DW_a_mom has mentioned this one before, maybe she could elaborate)


This seems like a great idea on the face of it, I know. The problem with this is that the one son we would use this for, it wouldn't work for, because he is so inconsistent about how long he takes to complete assignments. One day he can get everything done in a couple of hours. Other days, nothing at all, even though he really tries. Some days he simply can not concentrate (this is the son with severe ADHD) at all.

We have to keep reminding the staff that just because he did something once, does not mean he can do it "right now." We, and the staff have to keep making judgment calls on the fly when it comes to his productivity. There may be times (like right now), when it feels like panic mode, but usually by the end of the year, the overall amount of his work is sufficient.

DenvrDave wrote:
Grades to be based on in-class tests, and not on ability to complete the homework.


This varies from one son to another. One is graded pretty much the same as everyone else in the class, and does pretty well. My eldest, is graded differently, on both overall productivity (homework, projects and tests), and accuracy. He tends to choke during tests, and accommodations both for testing settings, execution of tests (some are given verbally), and homework are in place already.

Right now, our main concern is piss poor communication between the schools and us.

DenvrDave wrote:
Increase communication between you and the teachers, so you can ask questions about assignments.


Precisely. This has been a real problem from day one (Kindergarten!). A lot of it is just bureaucracy, but a great deal of it is also individuals with horrible communication skills. Don't they teach communication as part of college curriculum for these people? If not, they should, and should require at least a B grade to get credit for it if their major is in education.

The thing we need to get through to them is that verbally delivering information to these kids is about like printing it on a piece of paper and throwing it into the wind. They all have one on one assistants. I can't tell you how many times they've sent notes home that look like this:

"Assignment for Social Studies. Asia. He knows what it is." :roll: Uh... NO, he doesn't! He never does.

DenvrDave wrote:
Please understand, that even with these things...we still struggle in school and ultimately the school staff will not do anything out of the ordinary to help. The burden of the work has always been on my son and me, no matter how many accomodations we have gotten and no matter what strategies we tried to "negotiate" with the school. There is no negotiating. They do things they way they do it, and there is very little one can do to change or influence the system.


Yes, I do understand this. But, with all due respect, I do not accept it.

Either the system changes, or they quit asking me for help. I realize that may seem childish, but it's not, and here's why. We are taught all of our live by society (which includes the school system), that we need to work on things we have the power to change. We are told it's a waste of time trying to change things we cannot. But the fact is, schools CAN change.

Not only that, but to teach this to kids, then hit their own heads against brick walls trying to make children like ours behave as something they are not, is a bit hypocritical.

Many Autistic kids are highly functional. I like to compare kids to little machines. All of them filled with delicate parts. All of them capable of making life's journey. Some run with electric motors. Some run on clockwork parts. Some are rocket powered. All will get where they need to go eventually, but if you force the slower "vehicles" beyond speeds they are built for, it can damage the internal workings.

The public school system is part of a larger governmental system that was established based on values that did not accept the status quo. It was all about change, specifically change to empower individual rights. While it may be true that one family may not have the power to change the entire system, the family does have the power and the right to insist that their individual rights be respected. Whether one agrees with George Bush's politics over all, he did sign into law "No Child Left Behind." We have the power and the right to insist that law be applied to us.



DenvrDave wrote:
I understand the purpose of your post was mainly to blow off steam, and not ask for advice. Bottom line is, you're not alone...many parents including me feel the same frustrations as you regardless of neurology.


Yes, it was to blow off steam initially, and though I wasn't ready for advice at the time I wrote it, I also knew I would probably be ready to listen to ideas fairly soon. I appreciate your input, as well as everyone elses here.

DenvrDave wrote:
Hang in there! Best of luck! You'll get through it one way or another :D

PS: I've read many of your posts in other topics and appreciate your contributions.


Thank you on all three points. We will get through it one way or another. Whatever happens for the next few years, at some point, the schools will either listen and make changes where we are concerned, or will run out of time. They've only got twelve years. After that, we're somewhat on our own. We'll get whatever we can out of them until then.


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11 Sep 2010, 2:58 pm

MrXxx wrote:
DW_a_mom wrote:
LOTS 'o good stuff! :lol:


Yes on pretty much everything you said DW.

The main issue is getting the stupid, "What do you think we should do?" phone calls.

As for falling on their own swords, we do that too, when it's obviously due to their own faults. Unfortunately, a lot of why they miss stuff or don't get it done right is due to poor communications from the school.

I realize under most circumstances kids their age are expected to make sure they have clear instructions, and to advocate for themselves if they feel they don't. In my son's situations, as with my own when I was in school, most of the time it's a situation of not knowing what we don't know.

I remember having this problem at school, and have had it at almost every job I've ever had as well. If you think you've got the instructions correct, you think there's no need to ask for clarification.

"I know what I know, and have no idea what I don't know."

We all need crystal clear, step by step instructions for everything, in writing. If we don't have it, there is almost always a misunderstanding. At fifty years old, I still need everything that way.


I guess the challenge is for your kids to realize as soon as possible that their assumptions on what they do know are not always correct. So that they get in the habit of, no matter how obvious things are, repeating back what they intend to do with the instructions, so that the person giving the instructions gets the opportunity to say, "that is not what I meant." The more they can figure out that "obvious" is not always "obvious," the more they can start creating the work-a-rounds they will need to get through.

Those annoying phone calls ... you need hearing aids. I have the best answer to all that sort of thing: "I really can't do this on the phone. I wear hearing aids and have to focus uncomfortably hard, and even then I miss half of what is said." If one could insert "sensory issues with the phone" in place of hearing aids and actually have the other person "get" it, then we'll really have progress on public understanding of AS, won't we?

I've had my go-rounds with teachers on what they think is clear v. what I think is clear, and have had to settle with, "I'm sorry if you feel you've already stated that clearly 4 times, but we're going to have to ask for the 5th." There are people in this world that just cannot communicate with each other. Sometimes it's just, "my style of absorbing information does not seem to be compatible with your style of sharing it, so can we try something different?" Yeah, does not always go over that well, either.

Best of luck. Sorry it is so frustrating. With us, it all goes up, then down, then up, then down. We'll see where my frustration level is next month ;)


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