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Old 06-19-2011, 03:17 AM
 
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As I mentioned in another thread, we are currently torn about disclosing our son's recent Asperger dx at the age of 5 1/2 to his school.
He will start K in the Fall in the state of Georgia, in what is considered one of Georgia's best public school districts.

Our psychologist concluded that he has a mild AS form and that he is also very intelligent, especially when it comes to his verbal abilities, as well as academically advanced for the grade. In her report, she wrote that she recommends that my son "be placed in a regular classroom because of his many strengths".

For a long time after the diagnosis we felt that it would be best if we kept the dx private and let him start K without a label - just to see how things are going. Our biggest fear is that, if his behavior or performance in school become less than stellar in time, the school would be tempted to address any such problems with the Asperger dx in mind and recommend that he be placed in a Special Ed Class.

We know that this would be an absolutely UNACCEPTABLE solution for us. We are completely against encapsulating our child with other children with serious weaknesses that would only exacerbate his own, bringing out the worst in him. So Special Ed would be a complete NO-in absolute terms.
If it ever came to that (which nobody right now predicts that it would...but you never know), then we would have to home-school him - something we'd rather not do if we didn't have to.
This is the main reason why we had decided to have him start K without disclosing the dx to the school.

At the same time, we keep hearing about a variety of services/accommodations/help he MIGHT benefit from if the school knew about the dx. We would particularly appreciate some social skills guidance on site (where obviously we cannot be, as parents, on a day to day basis).
Although our son appears 100% normal, those who get to know him intimately figure out eventually that his social skills with age peers are not that great, he has attention issues and tends to respond in a delayed fashion to various commands.

Our final question would be: once the school has the dx in hand, could they ever start suggesting that it would be a good idea to place our son in a Special Ed class - for whatever reason?

I understood no school can legally FORCE parents to accept such placement. However, we all know that there are ways around "legality" and that practices such as putting parents between a rock and a hard spot can do the trick.

What would be the best place to get more information about our rights in this situation, for the state of GA?.

We have very recently become tempted to nevertheless disclose the dx to the school just to see what services he could benefit from (particularly things like "social skills groups", "pragmatics of language", etc). But we are terrified that once the Pandora Box is open, we would open the door to a possible placement-related war with the school later down the road, just in case our son turns out NOT TO have a perfectly smooth sail in school.

Had he been a NT child, we would be very excited about his K start right now, as he seems to be more than ready, strictly from an academic standpoint. Reads above grade level, writes full sentences, does some 2st grade math, etc. Most parents would only anticipate "roses and glory" in our situation, right now; but we're obviously not.

Knowing his social skill weakness, his attention problems and his somewhat delayed response to commands, all in the context of his recent dx, we are simply anxious, worried and heavy-hearted about his K start.

Not knowing what is the smartest/wisest thing to do abut disclosing or not disclosing his dx to the school - makes it even harder.

Thanks a lot for any info specifically related to the state of GA.
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Old 06-19-2011, 06:00 AM
 
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Academically it seems he would do fine based on what you wrote. Has he ever been in a set group setting like a class or daycare where you could see how he does with other kids? Socially interacting or going off by himself? Following directions in a group is different from doing the same as home, more generalized without as many details. Some of that is what Pre-K and K are all about but it would give you some idea how he acts around his peers and with other adults (who won't know him as well as you at first or might not be able to break down directions if its confusing) I've been a special ed aid to a student in a regular classroom (1st gr) - that particular student had a hard time staying focused, would wander off on unrelated topics, etc. but I also got to see how the rest of the class was doing and would help them as needed too. There were 2 or 3 other "regular" students who had a hard time of it, but there really wasn't time to give them the extra help they needed, they were constantly struggling to keep up with whatever was happening. Is there a social group that he could go to outside school hours? I know some private psychologist have them. Might help him learn to focus more as well.

I understand you concern about picking up bad behaviors, I had those same worries when my mr dd was younger. Back then, she was closer to borderline normal intellectually and we did try a regular class in private school.
It didn't help that her teacher never told me how she was struggling till Spring, here she hadn't been giving her the same homework/classwork. I remember being very upset - our intent was certainly not to have it be that difficult for dd but we didn't know all this was happening till later. Nothing had been mentioned as parent conferences. In March I found out she didn't interact with the other kids at recess, just played herself. Had a hard time in following teacher's directions well find what she needed in her desk, or bring home workbooks. She had done awesome in K in a smaller class but as more was expected, it was just too overwhelming. I felt we had lost valuable time in helping her achieve skills that we would have worked on at home or elsewhere. I'm sure it hurt her self-confidence. If you do decide to keep things quiet, keep close track of what's going on. I had assumed they would have told us about any problems and that wasn't the case. Anyway, that was our experience trying that, FWIW. Our dd didn't have the intellect that your child does so that's a consideration.


Hopefully, others will chime in who know more about GA specifically.
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Old 06-19-2011, 06:42 AM
 
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I can't speak to GA specifically. As far as them "forcing" you to do anything, the only time I could imagine a scenario like that would be in extreme circumstances, for example, if your son became so violent/uncontrollable when upset that he repeatedly attacked other children or became a huge disruption to the daily function of the classroom. But, from what you described, that doesn't seem to be the case. Also, they can often address that sort of thing with an aide within the classroom rather than by removing him to a separate classroom.

The law requires that he be given services in the LRE (least restrictive environment) possible. From your description, that sounds like a regular classroom, possibly with pull-outs for behavioral therapy. It sounds like you fear that he would be dragged into some situation like they used to do 50 years ago, where any child who was different was secluded away from the others in a separate room. They really don't do that model much any more, except in extreme cases, for example, if your son was an extreme threat to other children or if he was so severely disabled that he needed to focus on life-skill type curriculum, rather than academic curriculum. In most cases, schools work to keep any child who can possibly function in a regular classroom in that regular classroom.

I understand that it's hard for you to accept that your son may have a legitimate AS diagnosis. No one ever wants to hear that. However, I think knowing that early offers the most opportunity to intervene and give him assistance before things become an issue. It is better to communicate fully with the teacher, giving him/her all the information you have so that they can help your son and know how to respond appropriately to his differences. "Let's just see how it goes and hope this magically disappears" is not the game plan I would go with.

I think you need this in place in order to get help for your son if/when it becomes apparent that he needs it. I think you will want this in place if he starts getting into behavioral issues at school. No, you can't cry, "But he has AS and we kept it a secret!" after the fact if he's gotten into a fight with another child in a situation that might have been exacerbated by his diagnosis. Had the teacher and school known, they might have intervened or known to monitor that scenario more closely. He will not be their first child with AS. He will not be their only child with AS.

This will be harder for you than it will be for him, but it's something you probably need to do.
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Old 06-19-2011, 06:51 AM
 
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Originally Posted by midwestmom View Post
Academically it seems he would do fine based on what you wrote. Has he ever been in a set group setting like a class or daycare where you could see how he does with other kids? Socially interacting or going off by himself? Following directions in a group is different from doing the same as home, more generalized without as many details. Some of that is what Pre-K and K are all about but it would give you some idea how he acts around his peers and with other adults (who won't know him as well as you at first or might not be able to break down directions if its confusing) I've been a special ed aid to a student in a regular classroom (1st gr) - that particular student had a hard time staying focused, would wander off on unrelated topics, etc. but I also got to see how the rest of the class was doing and would help them as needed too. There were 2 or 3 other "regular" students who had a hard time of it, but there really wasn't time to give them the extra help they needed, they were constantly struggling to keep up with whatever was happening. Is there a social group that he could go to outside school hours? I know some private psychologist have them. Might help him learn to focus more as well.

I understand you concern about picking up bad behaviors, I had those same worries when my mr dd was younger. Back then, she was closer to borderline normal intellectually and we did try a regular class in private school.
It didn't help that her teacher never told me how she was struggling till Spring, here she hadn't been giving her the same homework/classwork. I remember being very upset - our intent was certainly not to have it be that difficult for dd but we didn't know all this was happening till later. Nothing had been mentioned as parent conferences. In March I found out she didn't interact with the other kids at recess, just played herself. Had a hard time in following teacher's directions well find what she needed in her desk, or bring home workbooks. She had done awesome in K in a smaller class but as more was expected, it was just too overwhelming. I felt we had lost valuable time in helping her achieve skills that we would have worked on at home or elsewhere. I'm sure it hurt her self-confidence. If you do decide to keep things quiet, keep close track of what's going on. I had assumed they would have told us about any problems and that wasn't the case. Anyway, that was our experience trying that, FWIW. Our dd didn't have the intellect that your child does so that's a consideration.


Hopefully, others will chime in who know more about GA specifically.
Midwest mom,

First, thank you for taking the time to write.

To answer your questions: yes, he was in pre-K where he did fine academically (if you can even talk about academics in pre-K) and OK socially. The teacher always said that his pre-academic skills were very good but that he needed to find more common ground with his peers.
He developed an intense preoccupation with dinosaurs in his 4th year of life and that is all he was ever interested in, to the point where he managed to frustrate the teacher one time.

At 4, I would often catch him wandering off on his own in the schoolyard, when I would come to pick him up at preschool. This changed later, as he he managed to make a couple of friends.

He also started to do much better on play-dates. He is perfectly capable of playing with a few friends but is just not doing well in larger groups. He can't seem to "schmooze" his way into play groups on his own.

Right now we have no reasons to fear poor ACADEMIC performance; there are, in fact, reasons to anticipate that he might even excel in some areas related to verbal abilities/vocabulary/memory where he scored in the 95th percentile on an IQ test (and in the 50th percentile on a variety of spatial-visual aspects).

We do, however, fear possible problems with attention. He scored very poorly on a section of the test that looked at ability to "stay focused/ on task". The psychologist said that was not part of the cognitive test but did show that he might develop attention problems in the future.
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Old 06-19-2011, 07:15 AM
 
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Originally Posted by h886 View Post
I can't speak to GA specifically. As far as them "forcing" you to do anything, the only time I could imagine a scenario like that would be in extreme circumstances, for example, if your son became so violent/uncontrollable when upset that he repeatedly attacked other children or became a huge disruption to the daily function of the classroom.
The violent part is basically impossible.
He is not an aggressive child and I have, in fact, spent time pumping him up to become more reactive if a child treats him badly. We are afraid he might be at risk for bullying - as he has presented to me some episodes in the past that vaguely seemed to point in that area - though nothing serious so far. He does not have any physical characteristics that might trigger bullying; he is in fact a very good looking child by conventional standards, albeit a bit skinny and with not so good muscle tone. But he does have a way that sometimes makes him appear "off" in social situations with peers - which, in and of itself, might trigger bullying in the future.

Quote:
Originally Posted by h886 View Post
It sounds like you fear that he would be dragged into some situation like they used to do 50 years ago, where any child who was different was secluded away from the others in a separate room. They really don't do that model much any more, except in extreme cases, for example, if your son was an extreme threat to other children or if he was so severely disabled that he needed to focus on life-skill type curriculum, rather than academic curriculum. In most cases, schools work to keep any child who can possibly function in a regular classroom in that regular classroom.
Yes, this is exactly what we fear even though he is nowhere close to any sort of "extreme". I know that such things are not done "much anymore" - but it is exactly this fuzzy area that scares me? What does "much anymore" mean? Things can always get down a slippery slope once the Pandora's Box is open.

Quote:
Originally Posted by h886 View Post
I think you need this in place in order to get help for your son if/when it becomes apparent that he needs it. I think you will want this in place if he starts getting into behavioral issues at school. No, you can't cry, "But he has AS and we kept it a secret!" after the fact if he's gotten into a fight with another child in a situation that might have been exacerbated by his diagnosis. Had the teacher and school known, they might have intervened or known to monitor that scenario more closely. He will not be their first child with AS. He will not be their only child with AS.
This will be harder for you than it will be for him, but it's something you probably need to do.
OK. You brought up some valuable points here and they make sense.
This is exactly why we are so torn.

Yet our concern with the power of the label, per se, is still torturing us.
I still don't know the teacher he will be placed with (we will enroll him at the end of July) but I am simply afraid that some teachers, if not most, are still influenced, if only subconsciously, by the label. I would not want the teacher to start out with low expectations of him just because he will be her AS/"special" child. We have always held high expectations of him at home and it is maybe why he is doing quite well academically for a still pre-K child. I am just afraid that the label will "lower" him in the eyes of the teacher - even if she would not consciously mean to have this opinion of him.

It is undeniable that labels, in and of themselves, have serious power.

Also, would I be able to request that the school will keep his dx absolutely confidential? I would be foaming at the mouth if I found out that children at school somehow picked on the fact that he has a dx and started to use it against him. In this case, they could only learn it from the school.
Are they even able to keep such labels low profile?

Would the children in school "catch on" if they saw he has an "aid" or whatever those "services" consist of?
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Old 06-19-2011, 07:35 AM
 
Location: Texas Hill Country
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My 5th grader got the dx in 2nd grade and we told the school and even though he is in Special ed he is mainstreamed and in most of his classes working on the next grade level. Special ED has changed alot over the years. Special ED is not the short bus any longer. Specail Ed is simply that, it is tailored to your child and what works for him. We love it, and the teachers have a clue about why our son might act a certain way and understand the reasoning behind it. As far as my relationship with the teachers it has been much better and some of the teachers and I are great friends now. You can ask "off the record" so to speak on how the AU (autism spectrum) label on him would affect him day to day to the special ed laison at the district you are in and maybe that will help.
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Old 06-19-2011, 09:13 AM
 
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even though he is in Special ed he is mainstreamed and in most of his classes working on the next grade level.
I am not sure I understand. Is he in regular classes but has some Special Ed support? If he is in a Special Ed class, what does it mean to be "mainstreamed"? Thanks.
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Old 06-19-2011, 10:58 AM
 
Location: Geneva, IL
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I am saddened that you would label other children with issues in such a disparaging light, but are so defensive of your own child. All parents wish the best for their own children.

In the school district you will be going into the majority of elementary school do not have "special ed" classes, to place your child on one of those, he would have to change schools. The district has "inclusion" programs and EIP (early intervention programs). The inclusion programs are for children who require additional services be they speech, behavioral services, and the EIP program is mainly academic support. Labelling children is beneficial in that children are placed where they may get the additional services that are beneficial to them individually, eg. EIP classes are generally smaller, and have additional teachers allocated to help with more 1:1 interaction.

Disclosing his condition will enable the teacher and the school to do their job to the best of their ability. There are many different children with many different issues, and if teachers had to guess what was going on with each child, it would detract from the teaching IMO.
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Old 06-19-2011, 11:36 AM
 
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The violent part is basically impossible. He is not an aggressive child and I have, in fact, spent time pumping him up to become more reactive if a child treats him badly. We are afraid he might be at risk for bullying - as he has presented to me some episodes in the past that vaguely seemed to point in that area - though nothing serious so far. He does not have any physical characteristics that might trigger bullying; he is in fact a very good looking child by conventional standards, albeit a bit skinny and with not so good muscle tone. But he does have a way that sometimes makes him appear "off" in social situations with peers - which, in and of itself, might trigger bullying in the future.
Then if he's not the least bit aggressive or prone to outbursts, you probably have very little to worry about. The only real reasons they would remove him from a regular ed classroom is if he was a threat to other children or if he couldn't handle the academics. Otherwise it is in everyone's best interest to keep him in the regular classroom.

The fact that he acts "off" and does not react as other kids do to stimuli (and you worry about bullying) would make it all the more important in my mind that the school be made fully aware of this. Many schools with the resources do a lot of work with social skills training with these kids, helping teach them the skills others pick up naturally. For many of these kids, it doesn't come naturally, but can be learned as surely as any other skill. All the more reason not to sweep this under the rug.

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Originally Posted by syracusa View Post
Yes, this is exactly what we fear even though he is nowhere close to any sort of "extreme". I know that such things are not done "much anymore" - but it is exactly this fuzzy area that scares me? What does "much anymore" mean? Things can always get down a slippery slope once the Pandora's Box is open.
I would say "much anymore" because I cannot rule out that nowhere in the entire country does some backwards school system, or some school system with only 100 kids in a K-12 schoolhouse do it. The law requires students to be placed within the LRE. That is what is done. If you were talking about a tiny district with no resources, you would have more cause to worry. You said your district is one of the nicest in the area. I don't think this is a realistic issue to worry about.

Quote:
Originally Posted by syracusa View Post
OK. You brought up some valuable points here and they make sense. This is exactly why we are so torn.

Yet our concern with the power of the label, per se, is still torturing us.
I still don't know the teacher he will be placed with (we will enroll him at the end of July) but I am simply afraid that some teachers, if not most, are still influenced, if only subconsciously, by the label. I would not want the teacher to start out with low expectations of him just because he will be her AS/"special" child. We have always held high expectations of him at home and it is maybe why he is doing quite well academically for a still pre-K child. I am just afraid that the label will "lower" him in the eyes of the teacher - even if she would not consciously mean to have this opinion of him. It is undeniable that labels, in and of themselves, have serious power.
I know you are worried about the label. But the thing of it is, your son is different. Even if you try to keep the diagnosis a secret, do you think he will magically begin behaving like the average child? Reacting to things like the average child? I have had AS students who are at the very top of my class--exceptional by any standard. I have had others who are at the lower end, and others who are just average. Chances are, this is not the first AS student his teacher will have had. Chances are, even if there is some negative connotation with the label (which you seem to carry a lot of yourself, incidentally, and I have to wonder how much this influences things), you will probably find teachers to be more knowledgeable and more informed about this subject than the average public, save for parents who have been through it with their own child and doctors who work with this type of child all the time.

Giving the teacher all the information you have helps him/her to do a more effective job teaching your son. I really don't see what you have to gain by withholding that information. Do you really want to sit in a conference in November (the point where the "just starting school willies" would have worn off and they would start to suspect an actual problem rather than just adjustment issues) where the teacher is spelling out all the AS behaviors you have already known were an issue, have him/her suggest you have him evaluated and then have to confess, "Well, he actually was already tested. We just kept it a secret." By that point, your son might have gotten off to a miserable start, have problems forming peer relationships and have developed an unhappy attitude about school in general. I'm not sure that's such a desirable outcome over the chance that the teacher might expect less with an AS diagnosis.

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Originally Posted by syracusa View Post
Also, would I be able to request that the school will keep his dx absolutely confidential? I would be foaming at the mouth if I found out that children at school somehow picked on the fact that he has a dx and started to use it against him. In this case, they could only learn it from the school. Are they even able to keep such labels low profile?

Would the children in school "catch on" if they saw he has an "aid" or whatever those "services" consist of?
The diagnosis is confidential by law. Everything about your child's educational record is. That's the reason that if a child bullies yours, the school cannot tell you the bully's name. It's part of their private educational record.

As to what the other kids will pick up on, that's tough, but I'm not sure that there's much you can do either way. If your son behaves differently, how much can be done to prevent them from eventually noticing that? Yes, they may wonder who the aide is, but most aides will be clever about not calling attention to themselves and they may think it's just the classroom aide, or his mom or something. Plus, your son may not even need a one on one aide. That is more often used in extreme circumstances. He might be served fine with pull-outs for behavioral therapy. Or he might have an aide who assists several kids in the same classroom. They do the lowest level of intervention needed. If your son did have enough difficulty functioning in a classroom to the point that he needed a one on one aide there with him, then frankly the point you're worrying over is moot. The kids would have no doubt picked up that he was different merely because of his behavior--which the aide could have helped cut down on before it became noticeable if they were there. It's six of one, a half dozen of the other. I don't say that to be hurtful, but merely to illustrate that there's only so much we can all control. Most classrooms will have multiple students who need one modification or another, most classrooms will have multiple students with a disability or difference.
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Old 06-19-2011, 11:39 AM
 
Location: PA
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My 12 y/o son is also mainstreamed in regular classrooms with an IEP, but still gets OT services, has a case manager to oversee the other teachers he has and does journal entries back and forth with her to address his feelings and self esteem. He also sees the guidance counselor on a weekly basis, and is eligible for speech and language, though we prefer to do that privately outside of school. He has a high IQ and is on high honor roll also, his difficulties are in behavior, communication (he is very literal and has problems with pragmatics), and social skills with his peers. He tends to do better in this area with adults rather than kids his own age, which is common with AS. He has a lot of accomodations listed in his IEP, and he cannot get into trouble because of behavior if it is a manifestation of his disabilty...we have been there and were thankful that he was "labeled" with AS. As far as the teachers expecting less, you could write a letter of introduction to hand out, explaining your child's strengths and differences, and ways which you have found helpful in dealing with him. My son's teachers sometimes think he is being disrespectful, but he is just so literal and needs black and white responses from them....again, another reason for having a "label", they understand more now and are more tolerant.
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