Teacher/School do not believe my son's HFA diagnosis

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claire-333
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24 Sep 2008, 11:48 pm

That's a very nice viewpoint. Things have most likely changed a lot too. My story is almost ten years old. At the time, there was only one person in the entire school district who even knew about Asperger's and she was only called in for consultations once a year.



gisgoddess
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25 Sep 2008, 10:39 am

Thank you all for you thoughts on this.

I'll try to address some of your thoughts/questions.

We are currently in the middle of the IEP process, so I really appreciate any suggestions from those of you who have been through the process.

We are in the States, so I know we have some legal backing to get services, but we might have to fight the school to get them.

As for the comments on medication. At the urging of our pediatrician we tried Ritalin and Concerta before my son was diagnosed with Autism. When he was younger they seemed to help somewhat, but over the past couple of years his anxiety has increased and the medication just seemed to amplify the anxiety. We took him off of the stimulants as soon as we recognized that they were making him more uptight. The neuropsychologist, his therapist, and his pediatrician have all recommended a very low dose of Prozac for him because he has such major anxiety.

I do realize that teachers are often over-extended and under-educated with regards to special needs. I also realize that my son's meltdowns can be disruptive, which is why we need to have a plan built into the IEP to deal with them. But, I think it would help if the teacher realized that the meltdowns are in response to stresses, not just a tantrum thrown by a child trying to get his way. I emailed the teacher several links to articles on Aspergers, with a couple of them specifically focused on dealing, or rather working to prevent, meltdowns. She hasn't commented or replied, other than to let me know she received the email.

As for having him in a different school, we live in a small community which is rather far from any schools that might better cater to the special needs of someone on the spectrum. So that option is, unfortunately, out.

The neuropsychologist and therapist have strongly recommended an aide for my son, but the school is definitely opposed to that, as I'm sure they feel it's going to stretch their resources even further.

Anyway, we're just trying to figure out our rights here and what we can reasonably expect from the school.

Thanks again for all of your helpful thoughts/suggestions!



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25 Sep 2008, 10:46 am

Your son sounds similar to my mine. Sounds like you're stuck with a teacher who refuses to understand your child. We had that problem a lot. Once the teacher shuts down, she is looking to have your child removed from that placement. She starts a paper trail of documenting his outbursts and she will say it's for the well-being of the rest of the class, etc........ Once they give up on your child, his behavior will get worse.

We experienced the roller coaster ride. My son only had one good year in public school and that's when a teacher's aide took interest in him and helped him above and beyond his IEP. When she left, he fell apart and I eventually had to remove him from public school to homeschool.

In regards to AS and school, I read that a child's prognosis is only as good as the teacher. It's rare to find one who will be a good fit. I don't blame the teachers so much...that's just the way it is.



DW_a_mom
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25 Sep 2008, 12:03 pm

DevonB wrote:

Just one word on an alternate perception...is it fair to your child, and the other children? It's hard enough for teachers to deal with age appropriate issues...but if they have to deal with one child over the others when they are having meltdowns, would it not be more fair to have him in a school where they know how to deal with it? He'll get the attention he needs, and with more specialized staff. I don't know the extent of things, so I'm just throwing things out there.

Good luck.


I think when handled with insight having our children in mainstream classes is an asset to the school and the other children. I've heard that for years now about my son, how he contributes so much to the class with his obvious passion for learning and his ability to speak in detail about so many subjects. Even if that wasn't true, there is learning to occur, as became evident from a PDD-NOS child also at our school. His presence taught the other children compassion, patience, and a whole lot about outer space :wink: .

The meltdowns CAN be prevented, but it does take training. My son has had ZERO meltdowns in class for FOUR years. The few at school have been during recess. Mostly he knows enough to stave them off until he gets home. It CAN be done. What you need is a teacher who knows when not to push, when to let the child be, when to give an accomodation. The more my son's teachers plain out left him alone to learn on his own in his own way, the higher his test scores became. Interesting, eh? They provide information, they buffer social problems, and then allow the child to learn. It should be that simple.


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DW_a_mom
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25 Sep 2008, 12:06 pm

gisgoddess wrote:

The neuropsychologist and therapist have strongly recommended an aide for my son, but the school is definitely opposed to that, as I'm sure they feel it's going to stretch their resources even further.



Ah, yes, this would be why they are fighting you ... money.

It often comes down to dollars and cents, doesn't it?


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natesmom
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25 Sep 2008, 12:52 pm

Did the school provide you a copy of the procedural safeguards. They are supposed to do that. There are numbers you can call for help. If the school does not accept the diagnosis, call one of those numbers as you need some additional support.

Do you agree with the goals in the IEP? That is the most important. Whether or not the teacher agrees with his dx of Autism, she still is required by law to follow the IEP. Was a functional behavioral assessment and behavioral intervention plan completed. Those are very helpful in determining the function of a persons behavior such as what are the precursors of a specific behavior (i.e., when people invades his space, he yells..). When you have that information, you are able to move forward with an intervention plan to help the child. Also, does your child have a picture schedule?

It is still very difficult if she doesn't believe in the dx. Is there a way you can provide her with additional reading that shows you don't have to look a specific way to have the label of Autism? A lot of professionals still see Autism as only one way. It is very difficult for them to get out of that little box. I am so sorry.

Again, my first encouragement to you would be to call one of those numbers for support. There are parent advocates that can assist you. If they are still difficult to work with and don't support the dx or if you don't agree with the IEP, you can take it to due process hearing or mediation (whichever is more appropriate to your situation). There a impartial hearing officer or mediator will assist you and team in coming to an agreement.

Good luck!



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25 Sep 2008, 1:33 pm

DW_a_mom wrote:
The meltdowns CAN be prevented, but it does take training. My son has had ZERO meltdowns in class for FOUR years. The few at school have been during recess. Mostly he knows enough to stave them off until he gets home. It CAN be done.


For some kids, I'd say the opposite is reverse. My son doesn't have meltdowns at home any longer (except for rare times). I'm not sure why he melts down in public and not at home. Honestly, I don't think there is any way they could have avoided a large percentage of meltdowns at school.



DW_a_mom
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25 Sep 2008, 2:09 pm

Tortuga wrote:
DW_a_mom wrote:
The meltdowns CAN be prevented, but it does take training. My son has had ZERO meltdowns in class for FOUR years. The few at school have been during recess. Mostly he knows enough to stave them off until he gets home. It CAN be done.


For some kids, I'd say the opposite is reverse. My son doesn't have meltdowns at home any longer (except for rare times). I'm not sure why he melts down in public and not at home. Honestly, I don't think there is any way they could have avoided a large percentage of meltdowns at school.


I'll clarify: for those kids capable of dealing with the overwhelming sensory environment that is school, meltdowns at school can be prevented with mitigation on the most important triggers and self-management skills to delay the meltdowns for a "safe" place like home.

I do know that some kids can't deal no matter how much you mitigate, because the one thing you will never be able to mitigate is the pressence of twenty other children. They can't get far enough to be ABLE to self-manage, because the pressense of those kids is so extremely agitating. But of the 6 kids at the elementary school that I believed were AS, only 1 was at this point. The others have all done great.


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claire-333
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25 Sep 2008, 5:18 pm

gisgoddess wrote:
As for the comments on medication. At the urging of our pediatrician we tried Ritalin and Concerta before my son was diagnosed with Autism. When he was younger they seemed to help somewhat, but over the past couple of years his anxiety has increased and the medication just seemed to amplify the anxiety. We took him off of the stimulants as soon as we recognized that they were making him more uptight. The neuropsychologist, his therapist, and his pediatrician have all recommended a very low dose of Prozac for him because he has such major anxiety.
Don't take my comments too personally. I have a personal deep aversion for pills.



Tortuga
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26 Sep 2008, 3:13 pm

DW_a_mom wrote:
I do know that some kids can't deal no matter how much you mitigate, because the one thing you will never be able to mitigate is the pressence of twenty other children. They can't get far enough to be ABLE to self-manage, because the pressense of those kids is so extremely agitating. But of the 6 kids at the elementary school that I believed were AS, only 1 was at this point. The others have all done great.


I know you understand that because I'm familiar with your other postings. I try to spread the word that some kids can't do it no matter what because it feels lonely when you are the parent of the that 1 kid who can't do public school. Initially, it feels like devestation when you see your kid floundering at school. Then, you realize it could have been no other way. Like you said, you can't rid the classroom of 20 students (in my son's case, he couldn't handle a class of 10 with 2 teachers).



DW_a_mom
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26 Sep 2008, 3:30 pm

Tortuga wrote:
DW_a_mom wrote:
I do know that some kids can't deal no matter how much you mitigate, because the one thing you will never be able to mitigate is the pressence of twenty other children. They can't get far enough to be ABLE to self-manage, because the pressense of those kids is so extremely agitating. But of the 6 kids at the elementary school that I believed were AS, only 1 was at this point. The others have all done great.


I know you understand that because I'm familiar with your other postings. I try to spread the word that some kids can't do it no matter what because it feels lonely when you are the parent of the that 1 kid who can't do public school. Initially, it feels like devestation when you see your kid floundering at school. Then, you realize it could have been no other way. Like you said, you can't rid the classroom of 20 students (in my son's case, he couldn't handle a class of 10 with 2 teachers).


I hadn't thought of that, how lonely it must feel. It would feel lonely. I am so sorry, it must be such a difficult call to make.

The parent at our school who pulled her child I think was fortunate in that she, herself, has such a strong support group among the parents. We all ask her how it is going, even the teachers and IEP team have been overwhelmingly supportive. They are having a great time, her and her son, but it certainly turned life upside down to take this on. Still, yes, now that she has done it, she does realize it could not have been any other way. But such a road it takes to get there ... I don't envy it, that is for sure. There could definitely be more balanced support out there for it, and guidelines on how to make the call, instead of everyone having to figure it out for themselves.


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gisgoddess
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26 Sep 2008, 6:35 pm

Today I got a very helpful email from his Resource Room (Special Ed) Teacher. My son is in this teacher's classroom about an hour a day. The teacher described a near meltdown situation that occurred yesterday. But he took the time to describe the situation that led up to the meltdown and his process in dealing with my son and trying to calm him down. He was able to able to help calm him to the point that a major meltdown was averted. That was so much more helpful than getting a call from the other teacher saying that my son had a meltdown to the point that he scared the other children. No information on what sent him over or what she did to try and calm him down. Now of course after the fact I realized I should have asked those questions.

Now what I'm not sure is, whether a full-blown meltdown was avoided because his resource teacher knows better how to handle him (I think this is definitely a factor), whether the smaller number of children in the classroom made it easier for my son to keep from completing boiling over, or whether this just wasn't as big of a deal to him (though it sounded like it had the potential to become so). I think it may be a combination of the first two especially.

After this email, I sent an email to his regular teacher (and cc'd the principal and school psych) and asked what kind of procedure is in place for when he does have a complete meltdown, whether in the classroom or elsewhere at the school. This is something I want to get solidified in the IEP, but our meeting isn't for another month (they're currently working on evaluating him), so I would like to see something at least preliminary put in place for now.

And, yes, I know that behavior and social skills are something that is not entirely the school's responsibility. Trust me, we spend a lot of time trying to work with him on those areas, but he simply doesn't have the issues at home that he does at school because he doesn't have the same stresses. We can try and model appropriate behavior and talk about appropriate behavior, but the reality of being at school is just so different than anything he deals with at home. He never has meltdowns at home any more because we've learned how to circumvent them by avoiding stressful situations or distracting him when something stresses him out. But we can't be there with him at school.

On the positive side, the school psych called me and talked for about 30 minutes yesterday. She seemed super supportive (you notice I say "seemed" cause I'm still reserving judgment ). She said that she thinks that behavior and social skills should be our primary focus in the IEP. About damn time! I have the hardest time not saying, "You know, I could give a f**k if he can't write at this point. Someday he'll learn to keyboard and he'll be able to express himself just fine." What I'm really worried about are his social problems. He needs help with them, pure and simple, or Middle School is going to be even more of a train wreck, socially, than it is for the typical teenager.

So, the psych said she understood my concern about the teacher. She said she was going to try and talk casually with the teacher, using the upcoming IEP meeting as a reason to discuss my son and his behavior. So that sounds positive.



Lunacie
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26 Sep 2008, 7:43 pm

This sounds so much like what we dealt with last year when my autistic granddaughter was in the special ed room in the morning and then in kindergarten in the afternoon. The staff was convinced that her meltdowns and bathroom accidents were deliberate temper tantrums and not the result of too much stress and noise and pressure. They insisted that she wasn't autistic and wanted to mainstream her into first grade this year.

They thought having a "safe place" between the first grade classrooms where children can go to chill out when they're having a bad day was going to take care of the problem, and of course if they insisted she do her work or else miss recess she'd have no problem doing her work. It took a whole two weeks before she had first overload/meltdown and was escorted screaming and crying to the special ed room.

A week later she was struggling to put her shoe back on (don't know how it came off), the teacher tried to "help" her and she threw the shoe at the teacher, striking her in the face. We asked for a meeting to go over the IEP and get some new suggestions.

The principle had sat our little one down to explain to her how much trouble she was getting herself into, and what the consequences would be (in school suspension) and she was able to see for herself that our little one just doesn't understand about actions and consequences and simply isn't able to self-regulate when the stress is too much for her.

So things looked like they were going well at the IEP update, but they were mostly concerned with her anger issues - and when I mentioned that in the beginning our therapist had considered that she might be BiPolar, the first grade teacher jumped all over that - something she actually understands whereas she doesn't have a clue about Autism Spectrum Disorder.

And speaking of the therapist, he was so relieved that they finally saw what he had been seeing as far as diagnosing her on the ASD spectrum, because they denied it so firmly he had been doubting himself and his diagnosis. Fine kettle of fish, eh? But now our little one is getting to spend more time in the special ed room where she can work without all the noise and distraction, and has an aide to help her part of the time in the regular classroom.

About broke my heart when the teacher noted that she doesn't have anyone to play with at recess because she insists on playing "her way" and the other kids don't understand that or want to play the games they're used to playing.


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Lainie
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04 Oct 2008, 10:28 pm

I have two aspie boys (and one with ts) and the school hasn't denied our reports, but state...

It doesn't adversly affect their education. Thats the loop hole they use.

Well my 12 yr old started MS this year and promptly went down hill after 3 weeks. My 8 yr old did too and now I have two children that have so much anxiety, they have been housebound for the last 3 weeks.

I have been fighting the school for 2 yrs trying to get them an IEP and at this point I am contacting different lawyers to hire.

But if your interested, email me and I can give you a wonderful Advocate site/forum with some parents and professional advocates who help online. They have been a lifesaver for me and have listed education codes and laws to support my letter writing.

It's basically a mix for all kids with special needs.

Lainie



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05 Oct 2008, 2:27 am

Lainie wrote:
I have two aspie boys (and one with ts) and the school hasn't denied our reports, but state...

It doesn't adversly affect their education. Thats the loop hole they use.

Well my 12 yr old started MS this year and promptly went down hill after 3 weeks. My 8 yr old did too and now I have two children that have so much anxiety, they have been housebound for the last 3 weeks.

I have been fighting the school for 2 yrs trying to get them an IEP and at this point I am contacting different lawyers to hire.

But if your interested, email me and I can give you a wonderful Advocate site/forum with some parents and professional advocates who help online. They have been a lifesaver for me and have listed education codes and laws to support my letter writing.

It's basically a mix for all kids with special needs.

Lainie


Uh huh, cause we all know outright bullying by other mainstream students can't adversely affect their education. The public schools are lying if they believe that mainstream kids won't take the first opportunity they have to "pick on the 'tard"



Lainie
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06 Oct 2008, 9:33 am

Exactly! They would look at my child and say "he is well liked". Well he is well liked... in class. He is sweet, and respectful, and kind, but different.

But on the playground... does anyone let him in on a game of tag? Is he actually playing with someone or is he walking around everyday all by himself? Does he spend more time talking with the adults or visiting the teacher in her class during lunch time than with the other kids?

There's a big difference between the two things. And I have found with both my boys, that teachers or staff NEVER see the bullying. I do because I get it straight from the kids.

Lainie