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I also wanted to suggest you get in contact with other parents of special Ed students within the school district. Typically they have a PTA, or SEPTA (Special Education Parent Teacher Associate.), or something similar.
They will give you the lowdown on how your district's special education Dept works. The sp. Ed Dept. will usually do their best to give you as little info as possible. They typically prefer parents who are not knowledgeable about the system.
Syracusa, you can fight it. Qualifying for special education services doesn't mean being excluded from the general student population in a special education classroom all day. By federal law, your child has a right to be in the least restrictive environment. Considering schools are embracing inclusion classes to lower special education costs, it's very unlikely you will have a fight. But if you have a fight, you wil win.
To reassure you, I'll share that I did have a smiliar fight. My son only needed help in the language arts but at the start of first grade, he was placed in the most restrictive environment---a special education classroom with severely disabled students. When I raised bloody hell over it, I learned that the district only did that because their ratios were already met in the other special education classrooms. (Proper placement for my son was full regular classsrooms and only going to a special educaton classroom for READING and WRITING where the other students in the classroom were only there for READING and WRITING too. His school didn't make the switch to inclusion classes until he was in 3rd grade. But that time he had exited out of special ed because he read at a 7th grade level at the end of 2nd grade.)
Guess what? The district had to hire an additional special education teacher and open a second lanugage arts special education classroom---just because there wasn't room for one more child, my son, in the existing classrooms. Being filled to capacity is no reason to be placed inappropriately. If the district provides a specific environment for students, the district is required by law to provide that environment for all students who qualify. It's the law!
If necessary, you fight the good fight. When writing letters and in meetings, just keep repeating, "My son has a right to be in the least restrictive environment." Say it over and over again. Put it in writing. You can report them to the state. They know it. When you put it in writing, that tells them that you know you can report them too.
Just make sure that you don't turn away the services that can help a child with aspergers because your son will benefit from lots of special instruction on social interaction.
I found so interesting this definition of Aspergers on the site jasper recommended:
"Asperger Syndrome (AS) is a severe developmental disorder characterized by major difficulties in social interaction, and restricted and unusual patterns of interest and behavior".
The underlining is mine.
It makes it sound like it is something that would strike anybody as a horrible disaster.
My son is anything BUT "severe". He simply can be a difficult, tiring child- and even this, not always.
Definitely not a "severely disabled" kid.
No wonder there is so much confusion, misinformation and grotesque perceptions out there.
Well you know what they say, "if you've met one person with autism, you've met one person with autism." No two cases are the same, which makes it confusing.
Quote:
Originally Posted by nana053
It is also true that doctors will say asperger's because it carries less stigma than autism.
I agree that doctors do this, but Asperger's carries the stigma of "I'm socially awkward and diagnosed myself on an internet chat room". For this reason, a lot of people don't take Asperger's seriously and think it's made up.
I think the best thing you could do, before making any major decisions, is to get a 2nd and even a 3rd opinion, because your gut is telling you the dx your son received is not correct.
I will be honest with you - yes it is true I feel this way.
At the gut level, I know that if he does have anything "abnormal", it is something very mild which probably blends into the normal spectrum. The psychologist herself said something like this when she discussed the results of the evaluation.
It is indeed bothersome and worrisome to know that he might be affected both by whatever level of "disability" he has and by the label itself; but at the same time - I know in my heart of hearts that we need to get another opinion as he acts way too much like a perfectly normal child 90% of the time.
We will try to see someone at the Marcus Institute in Atlanta just to get someone else to confirm that the dx is indeed there - and if it is, how "badly" does he have it.
Syracusa, you can fight it. Qualifying for special education services doesn't mean being excluded from the general student population in a special education classroom all day. By federal law, your child has a right to be in the least restrictive environment. Considering schools are embracing inclusion classes to lower special education costs, it's very unlikely you will have a fight. But if you have a fight, you wil win.
To reassure you, I'll share that I did have a smiliar fight. My son only needed help in the language arts but at the start of first grade, he was placed in the most restrictive environment---a special education classroom with severely disabled students. When I raised bloody hell over it, I learned that the district only did that because their ratios were already met in the other special education classrooms. (Proper placement for my son was full regular classsrooms and only going to a special educaton classroom for READING and WRITING where the other students in the classroom were only there for READING and WRITING too. His school didn't make the switch to inclusion classes until he was in 3rd grade. But that time he had exited out of special ed because he read at a 7th grade level at the end of 2nd grade.)
Guess what? The district had to hire an additional special education teacher and open a second lanugage arts special education classroom---just because there wasn't room for one more child, my son, in the existing classrooms. Being filled to capacity is no reason to be placed inappropriately. If the district provides a specific environment for students, the district is required by law to provide that environment for all students who qualify. It's the law!
If necessary, you fight the good fight. When writing letters and in meetings, just keep repeating, "My son has a right to be in the least restrictive environment." Say it over and over again. Put it in writing. You can report them to the state. They know it. When you put it in writing, that tells them that you know you can report them too.
Just make sure that you don't turn away the services that can help a child with aspergers because your son will benefit from lots of special instruction on social interaction.
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.
I would appreciate any elaboration on the scenario h886 presented above, as we have just a few weeks until enrollment and are still extremely torn about disclosing our son's dx to the school. We have had parents who suggested that if we do this, there is no way back (Pandora Box open) and that everything the child will ever do outside the realm of "perfect", it will be blamed on the Aspergers.
We do plan on getting a second, even third opinion, but in the meantime are trying to decide what to do when he starts school. It will probably be a while until we get to see another psychiatrist.
Let's assume he just starts school like a normal child. Then something comes up - whatever that is.
A comment from the teacher (such as, "he fidgets" or "doesn't pay attention") or some conflict with another kid, whatever that is. Then we tell the school that we had this dx when he was 5 1/2 but did not feel comfortable with the psych suggestion at the time and did not want to apply a label on him right from the start.
What would be the problem with that? Can the school "reprimand" us just because we were "bad kids" and did not tell "the truth?"
What if I didn't want the school to have that information at the time our son started school? Wouldn't that be within our rights?
If problems indeed do show up, why not take the steps needed and deal with the problems WHEN they happen - instead of anticipating them and expecting them?
I would need to know what can the school do to us, legally or "off the record", if we reveal the dx later (when/if a problem appears) as opposed to disclosing it from the start?
After all, this was an investigation/evaluation we did privately.
The psychologist who did this herself suggested that we DO NOT HAVE TO disclose it to the school if we don't want to.
I would appreciate any elaboration on the scenario h886 presented above, as we have just a few weeks until enrollment and are still extremely torn about disclosing our son's dx to the school. We have had parents who suggested that if we do this, there is no way back (Pandora Box open) and that everything the child will ever do outside the realm of "perfect", it will be blamed on the Aspergers.
We do plan on getting a second, even third opinion, but in the meantime are trying to decide what to do when he starts school. It will probably be a while until we get to see another psychiatrist. Let's assume he just starts school like a normal child. Then something comes up - whatever that is. A comment from the teacher (such as, "he fidgets" or "doesn't pay attention") or some conflict with another kid, whatever that is. Then we tell the school that we had this dx when he was 5 1/2 but did not feel comfortable with the psych suggestion at the time and did not want to apply a label on him right from the start.
What would be the problem with that? Can the school "reprimand" us just because we were "bad kids" and did not tell "the truth?" What if I didn't want the school to have that information at the time our son started school? Wouldn't that be within our rights? If problems indeed do show up, why not take the steps needed and deal with the problems WHEN they happen - instead of anticipating them and expecting them?
I would need to know what can the school do to us, legally or "off the record", if we reveal the dx later (when/if a problem appears) as opposed to disclosing it from the start? After all, this was an investigation/evaluation we did privately. The psychologist who did this herself suggested that we DO NOT HAVE TO disclose it to the school if we don't want to.
First off, I want to point out that the vast majority of the schools you encounter are going to try to do the right thing for the kid. I really do think you are worrying about an improbability. I also think you are creating problems for yourself by coming into the situation like everyone else is the enemy. IF it becomes clear there is a problem, then by all means, be the mama tiger. But right now you are treating the people who could potentially offer help (free help that your taxes pay for!) like they are the sworn enemy, instead of knowledgeable professionals who have dealt with many kids like this before. I think you are creating potential problems for your son by potentially allowing him to flounder for months at the start of his formal educational experience and trying to keep it a secret that he has this diagnosis. I worry that you are allowing your stigma of the condition to negatively affect him.
If the teacher knows of the diagnosis, she will know on the smaller issues that your DS may need a different approach, may need the instructions repeated, presented more firmly, may need time to adjust to changes that other children wouldn't. She may know to watch out for scenarios that would bother DS that wouldn't bother the other kids, to try to work around them, rather than put him in them. This would all likely be part of a behavior plan and it would be part of his plan for growth rather than something he's being punished for because of behaving "badly." This will all be coordinated and signed off on in meetings with you, his teacher, the principal and the special ed coordinator.
A child cannot be punished for things that are a manifestation of his disability that is on file. So, if he got into a fight at school (let's say he got overwhelmed in the room, the other kids weren't doing what he wanted them to--you said he can be bossy) and he shoved a kid. Well, there are disciplinary consequences for that action. If he did something worse, there are disciplinary consequences for that too. There are disciplinary consequences for not doing what the teacher says in the classroom on a regular basis. If the teacher knows there is a disability and has his behavior plan in place, your son likely gets extra chances and has a specific, consistent plan for behavior modification, tailored to what he needs. If he doesn't, he will be disciplined the same as anyone else, regardless of whether it's harder for him than everyone else to do what is expected because of a disability you are keeping secret.
If the school knows of his diagnosis ahead of time, they can have him evaluated on their own, have him seen by the special ed coordinator and have the teacher brought into the loop. You will be a full part of every meeting, sign off on everything. The teacher would know to look out for the things that might bother your son and wouldn't bother other kids as quickly. It's not that you will be "reprimanded" for not telling, but that until this diagnosis is on file with the school, your son will be held accountable for his actions as if he was a regular student. That means that until it's on file, you don't get to decide something was a manifestation of his disability. As far as the school is concerned, there is no disability until such time as it's officially on file.
Pulling the "secret diagnosis" card after the fact will get the ball rolling on getting him set up in special ed after that point, but no, it's not going to erase whatever altercation just happened. The school will have that on record as proof that there is an issue that needs addressed, that there is a problem with the current set-up. If it's clear that you're trying to work against them (you know, by withholding stuff like this) and your son's behavior is becoming problematic, then I hate to say it, but they're likely to go into cover their a$$ mode and start documenting every little thing up the wazoo. This is never the approach I would take.
First off, I want to point out that the vast majority of the schools you encounter are going to try to do the right thing for the kid. I really do think you are worrying about an improbability. I also think you are creating problems for yourself by coming into the situation like everyone else is the enemy. IF it becomes clear there is a problem, then by all means, be the mama tiger. But right now you are treating the people who could potentially offer help (free help that your taxes pay for!) like they are the sworn enemy. I think you are creating potential problems for your son by potentially allowing him to flounder for months at the start of his formal educational experience and trying to keep it a secret that he has this diagnosis. I think the stigma here is all in your head, and I think you're visiting it upon him, which is sad to me.
If the teacher knows of the diagnosis, she will know on the smaller issues that your DS may need a different approach, may need the instructions repeated, presented more firmly, may need time to adjust to changes. This would all likely be part of a behavior plan and it would be part of his plan for growth rather than something he's being punished for because of behaving "badly." This will all be coordinated and signed off on in meetings with you, his teacher, the principal and the special ed coordinator.
A child cannot be punished for things that are a manifestation of his disability that is on file. So, if he got into a fight at school (let's say he got overwhelmed in the room, the other kids weren't doing what he wanted them to--you said he can be bossy) and he shoved a kid. Well, there are disciplinary consequences for that action. If he did something worse, there are disciplinary consequences for that too. There are disciplinary consequences for not doing what the teacher says in the classroom on a regular basis. If the teacher knows there is a disability and has his behavior plan in place, your son likely gets extra chances and has a specific, consistent plan for behavior modification, tailored to what he needs. If he doesn't, he will be disciplined the same as anyone else, regardless of whether it's harder for him than everyone else to do what is expected because of a disability you are keeping secret.
If the school knows of his diagnosis ahead of time, they can have him evaluated on their own, have him seen by the special ed coordinator and have the teacher brought into the loop. You will be a full part of every meeting, sign off on everything. The teacher would know to look out for the things that might bother your son and wouldn't bother other kids as quickly. It's not that you will be "reprimanded" for not telling, but that until this diagnosis is on file with the school, your son will be held accountable for his actions as if he was a regular student. That means that until it's on file, you don't get to say something was a manifestation of his disability. As far as the school is concerned, there is no disability until such time as it's officially on file.
No, you don't get to pull the "secret diagnosis" card after the fact. You can tell them then and it will get the ball rolling on getting him set up in special ed after that point, but no, it's not going to erase whatever altercation just happened. The school will have that on record as proof that there is an issue that isn't being addressed, that there is a problem with the current set-up. If it's clear that you're trying to work against them (you know, by withholding stuff like this) and your son's behavior is becoming problematic, then I hate to say it, but they're likely to go into cover their a$$ mode and start documenting every little thing up the wazoo. This is never the approach I would take.
First off, I want to point out that the vast majority of the schools you encounter are going to try to do the right thing for the kid. I really do think you are worrying about an improbability. I also think you are creating problems for yourself by coming into the situation like everyone else is the enemy. IF it becomes clear there is a problem, then by all means, be the mama tiger. But right now you are treating the people who could potentially offer help (free help that your taxes pay for!) like they are the sworn enemy, instead of knowledgeable professionals who have dealt with many kids like this before. I think you are creating potential problems for your son by potentially allowing him to flounder for months at the start of his formal educational experience and trying to keep it a secret that he has this diagnosis. I worry that you are allowing your stigma of the condition to negatively affect him.
h886,
You may be right but I am firm in my belief that labels carry weight, that they affect behavior in the long-term, that they lower expectations and that they DO carry stigma, whether we like it or not. The stigma is not mine. It is ours - the people who live on this Planet.
Special Ed may have "come a long way" in the US but the reality is (not the wishful thinking) that there is stigma attached to it, and not little. LOTS.
If I can prevent my son from starting out in life with a negative label (because Aspergers IS a negative label, no matter how we twist it), then I will do it - as long as there is a chance he might do fine without having the label attached to his forehead.
Quote:
Originally Posted by h886
If the teacher knows of the diagnosis, she will know on the smaller issues that your DS may need a different approach, may need the instructions repeated, presented more firmly, may need time to adjust to changes that other children wouldn't. She may know to watch out for scenarios that would bother DS that wouldn't bother the other kids, to try to work around them, rather than put him in them. This would all likely be part of a behavior plan and it would be part of his plan for growth rather than something he's being punished for because of behaving "badly." This will all be coordinated and signed off on in meetings with you, his teacher, the principal and the special ed coordinator.
I understood this and it is appealing to know he may have things "softened out" for him in anticipation of the manifestations of his "disorder".
(I am yet to be convinced that a child manifesting the textbook traits of Asperger is a "disordered" human being rather than a person with a different type of personality, but that's the topic of a different thread).
At the same time, I am afraid that the school will lower expectations of him by the very nature of what it means to know that a child is "disordered".
Quote:
Originally Posted by h886
So, if he got into a fight at school (let's say he got overwhelmed in the room, the other kids weren't doing what he wanted them to--you said he can be bossy) and he shoved a kid.
I never said he is bossy, definitely not with other children. He is rather likely to withdraw if not listened to or picked on. My fears are in the areas of him being bullied rather than him being aggressive and bossy with other children. This is the part that makes it most tempting for me to DISCLOSE the dx.
I would certainly not mind an eye on the part of the school to make sure he joins in with other children and does not get bullied. But then again, what parent would not want that - whether they have a so-called "NT" child or "special"?
I do teach him to stand up for himself. I would like to believe he would be capable of reacting if a child picked on him. In my ideal world, I would teach him to hit back HARD if any child ever bullied him (it is, in fact, what I am teaching him because I always thought he should be more aggressive when among children). We often talk about the difference between attack and self-defense and he knows the rule that you should NEVER attack but you should always defend yourself with all you have, physical fight included. As far as I know, he has never been in a position to have to defend himself that way and I pray he never gets there.
Quote:
Originally Posted by h886
If the school knows of his diagnosis ahead of time, they can have him evaluated on their own, have him seen by the special ed coordinator and have the teacher brought into the loop.
What if the second psych he sees will be unconvinced he has AS?
Also, once you say "my child has been dx-ed with AS by a private evaluator", is the school's evaluator likely to remain objective and say "no, we don't see what she saw, sorry" - if they really don't see anything?
Chances are they will be looking for trouble/traits once they were warned traits might exist.
Quote:
Originally Posted by h886
It's not that you will be "reprimanded" for not telling, but that until this diagnosis is on file with the school, your son will be held accountable for his actions as if he was a regular student.
As far as we are concerned, this would be a wonderful thing because at home, we too hold him responsible for his actions AS IF he was a regular child. Because we SEE HIM as a regular child, with some behavior problems.
I have watched many "you tube" videos about AS children since we received the dx - and I must admit I felt deep discomfort with the extent to which parents tend to indulge, tolerate, accommodate and coddle downright unacceptable behavior in the film - all under the impetus that the child has AS and "he can't help it anyway".
Ours can, because we expect him to. We treat him as if he has a choice; and 99% of the times, he ends up going with the choice he should normally make.
A recent example has to do with a meltdown. He still has meltdowns, though never in public and not violent. He just starts whining like crazy and crying as if he is emotionally crushed when something he thought he was going to get is suddenly no longer possible (go figure, life is unpredictable that way). Yesterday he had one of those - here, in my home country, where we are right now, and where nobody knows anything about Aspergers. My mom said that she once heard something about autism on TV but she has no clue what that is and that no one is interested in finding out anyway - as this is a culture that is very skeptical of psycho babble and where people simply believe in "getting your s**t together". Or else.
My father, who has absolutely no clue about AS, neither would he ever accept to become educated on something like that - absolutely cannot stand his tendency to whine and have a meltdown when he doesn't get what he wants. He thinks this is beneath a "boy"; as in male. As in "alpha male".
He started it yesterday when he was told he can't go in the neighbor's yard to play with his pup because the neighbor (friend of my parents) was busy, had some guests, whatever.
As a result, he went ga-ga with his whining, then crying , then emotional overdrive - as if not being allowed to play with the puppy that evening was the end of the the world. My father got severely worked up by his reaction and asked him to stop. He didn't. I tried to talk to him calmly - it wasn't going to happen.
To which, my father lost it completely and yelled at him in a big time thunder voice. (My father has quite the overbearing personality, I have to say). Guess what? He stopped upon demand when he saw that the s**t hit the fan. Could it be that the AS just suddenly took a break?
He went back to his room and cried some more in private, after which he came out of his room, completely composed and apologized.
People here believe that what you can't do by getting your own s**t together (to be read "internal motivation"), you can perhaps do out of fear. That is good enough for them.
He is a very disorganized, inattentive child, drops things all over the place - and yet his room is pretty clean most of the times because we hold him up to it and make him go back and fix his room every time. It's not internalized yet but maybe one day, in 10-15 years, it will.
He whines and says "it's too hard" - but he does it nevertheless. In the morning, he often fixes his own breakfast and on Saturday, he vacuums his own room. Many NT adults are not held up to this level of "functioning".
He also has a tendency at times to get sillier than called for at his age. We don't tolerate it because it is annoying as H; and go figure, it got even more annoying since I found out that this is what AS children do.
As a result, I give him the look, and magically enough, he stops as he understands that this greatly displeases us.
When I was watching the "you tube" AS videos, I have seen many parents accommodating and even encouraging the worst kind of silliness (loud noises, babbling, sticking out tongue, jumping like crazy, just overall unpleasant manifestations even for a 3 yo, let alone more) - simply because they know the child has AS.
And what if he does? Does that mean every c**p he produces needs to be accommodated? We strongly believe an AS child can still skip the extreme silliness if you hold him up to it; but many parents don't. They just seem to indulge the child because he has the "disability", aka the ability to behave like an a** . I have seen it with my own eyes. Example below.
It is because of this philosophy we hold that we would very much welcome the school holding him responsible for his own actions.
Not only do we treat him like a normal child, we treat him like a "stellar" child. We expect that he step up to the plate and he does. Most of the times.
Quote:
Originally Posted by h886
Pulling the "secret diagnosis" card after the fact will get the ball rolling on getting him set up in special ed after that point, but no, it's not going to erase whatever altercation just happened. The school will have that on record as proof that there is an issue that needs addressed, that there is a problem with the current set-up.
OK. So then, we will address it from there. What's wrong with that?
I just need to know whether the school could do something to us (legal or "off the record") just because we did not disclose the dx from the very beginning. We could simply tell them the truth: that we were not convinced that the dx was even correct, that we felt our son was normal in one million ways, that the psych herself said that his case is mild, and that we did not want him to start school with a label on his forehead. But now, that we seem to have a real problem in our hands, let's get down to work (save being placed in a SPED class, in which case we would say "thank you very much, it was great knowing you - Hello homeschooling").
Problems with this scenario?
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