Why Autism?

[Schmeck]

Often, it's the schools that put parents in the unfortunate position of being "those parents." If parents don't advocate for their own children, who will?

The sad thing is, I wonder every day how many children's lives are ruined by "educators" who mislabel them and ship children away to segregated classes where they are basically warehoused instead of taught.

The school system I teach at does not "label" the children at all - the diagnoses of medical/mental disabilities comes from a medical doctor. Learning disabilities are addressed by school testing, which is all documented. I'd never rely on an education system to diagnose a spectrum disorder, or anything else of that level.

I feel sorry for all of you in school systems that you feel you need to bring 'surprise advocates' to meeting's etc. Of course, in this school district that wouldn't work, as every person that comes through the front door has to be invited - if the advocate wasn't on the list the advocate wouldn't make it through the second set of doors. The advocate has to be on the list - the parent has the right to invite anyone, but has to notify the school ahead of time for that person to be let in past the main office. The meeting would have to have been rescheduled so that the advocate could be put on the appropriate list, for the next day at the earliest. We have very tight security, especially past the main lobby.

Once again, student confidentiality keeps me from telling you about some pretty amazing demands made by some parents.

 

[BeckyScott]

The school system I teach at does not "label" the children at all - the diagnoses of medical/mental disabilities comes from a medical doctor. Learning disabilities are addressed by school testing, which is all documented. I'd never rely on an education system to diagnose a spectrum disorder, or anything else of that level.

Schmeck, you know I'm not trying to pick on you, you know I'm not but I have a question for you.

What happens then, if you have a child who has been diagnosed with something (anything, really, although of course I am looking at spectrum mostly) and the school doesn't agree with it? Because they can do that, and they will. That's why the whole Procedural Safeguards is in place. You go to the dr, get a diagnosis, the school doesn't want to do anything-- then the procedural safeguards kick in. That seems to be a big reason they were created, which would lead me to believe it's not a rare occurance.

It seems like sometimes the school system wants it both ways... They don't want the responsibility of doing an eval, of having the qualified people in place to do evals, they expect you to go to a doctor/psych for that. They are not in the business of medicine/psychology. But at the same time, they want the right to disagree, to say a child doesn't qualify for services, when the parent could have a doctor/psych evaluation that specifically states that a child needs certain things. So which is it? Who is "right"? If the school doesn't want the responsibility of diagnosing, then they shouldn't have the right to disagree.

Our school district, once again, and I can't even begin to tell you how often this happens, is pulling the "medicate them or they can't come back" routine on a friend of ours. The school doesn't care what the doctor says. I'm sorry, but the last time I checked nobody in our school system is an MD or anything even close to it. But they feel they have the right to tell a parent to drug up their kid? And I know, I know, if the school says it, then it's "on them" to take care of it, and I know you should go get a lawyer. But I also know that most parents are intimidated, or they can't afford to get a lawyer. For every story of an overly-demanding parent, there's another story of a school that overstepped their boundaries.

edited to add: I went to a meeting with a good friend about a month ago, for her DS. He is pretty much alphabet soup- ODD, ADHD, Aspie, anxiety, etc- She had a note, less than a week old, from a child psych with his alphabet of diagnosis, saying that the child should have certain things in place. Organizational helps, social skills, that sort of stuff, really nothing major. The school's conclusion: He has no LD's. Thank you very much, don't let the door hit ya on the way out. I mean, what is that? Now what does she do? I said, you'll have to get an advocate or a lawyer. Yeah, righty, so now she has to pay someone to go in and "scare" the school into helping her son? The school isn't qualified to diagnose him, but they are qualified to disagree?

Isn't that sort of like the scam with SSI? Deny everyone, and see who is willing to pay a third party for help? Deny everyone so we can weed out who is serious?

 

[Schmeck]

In our school system, we don't accept accommodations 'prescribed' by a doctor, just as a doctor shouldn't accept a school system's medical evaluation.

I'll try to detail the process without going over the confidentiality boundary:

1. Parent or school requests an initial meeting because a child is suspected of having a disability. The parent may have documentation already of a medical/mental disability from a professional.

2. Preliminary meeting is held to decide if an IEP or 504 is needed, most of the time academic testing is set up first.

3. Another meeting is held after academic testing. Recommendations are made by the school staff. The parents are asked for input. At this meeting it is decided what goes in the ed plan, if there is to be one. Other options can also be given.

4. The IEP is created, sent home to be signed or not signed. If the parent refuses the IEP, another meeting is scheduled. The parent is asked before the meeting to bring anyone and anything to this meeting to help everyone figure out what is wrong and how to fix it. Sometimes the parent asks for the moon, and it is impossible to meet all demands as they conflict. This is pointed out.

At no time is the parent forced to sign for services they do not want, or if they are not getting the services they want for their child. Medication is a private issue, behavioral/safety issues are dealt with quickly. All children need to be safe before anything else can occur. If a child, even one with a disability, cannot behave safely in a school, then other arrangements need to be made. Until the school system and the parent agree on that, then services already in a signed IEP take place outside of the school.

 

[bookwormde]

Schmeck, It is interesting how your district does things.

The nuances between states is always interesting, our states procedure is a follows:

The parent or school recognizes a potential disability or issue possibly covered under IDEA, either request an evaluation (it is virtually unheard of for the district to refuse to do an evaluation). Parental permission forms are then signed for the evaluations. If there are any medical reports or evaluation, which the parents choose to share with the evaluation team, they are sent.

Once the evaluations are complete (no more than 60 days) there is an IEP meeting to determine educational classification under IDEA. If the child meets one of the classifications, then either the meeting continues to develop an IEP or a meeting is scheduled. If the child does not meet the criteria for one of the classification under IDEA but still has issues which need to be addressed under 504 then the process moves in that direction. The parents are full and equal participants in the classification determination and if they disagree with the consensus may invoke administrative process as a part of an appeal.

An IEP determination may not be undertaken without the necessary school evaluations or equivalent private evaluations. If the parents disagree with any of the schools evaluation the may have “private” evolutions done which are paid for at standard and customary rates paid for by the school.

Once the IEP meeting moves on to developing an IEP, all members continue have input. The parents have equal input as the school. The current “situation” that the child faces are reviewed, strengths, needs and concerns are listed and consensus is reached as to those, which are related to his/her IDEA educational classification. Again if there is not conesus the disagreement move to the “process” phase and the areas of consensus move forward. Supports accommodations, modification to the education process and materials are developed for each of the needs and concerns. Again if there are areas were consensus couldn’t be reached these move on to the “process” phase and for the rest representative measurable goals are developed. Often the supports, accommodations and modifications, and development of goals are done sequentially for each concern or need for the sake of efficiency. As a major part of this process the team must evaluate if the child’s needs can be met in the least restrictive environment, when given full and comprehensive supports, accommodations and modifications. If the child’s needs can not be met in LRE (1st level is the standard classroom) the next level is evaluated (typically an inclusion classroom), if the child’s need can not be met in this next level of LRE the process continues though all the subsequent level until the lest restrictive environment that will meet the child’s needs is found.

In all of this parents are equal partners. The parent also have the right to bring support people or any other who have useful knowledge of their child, the IEP process or identifying concerns and needs and developing appropriate supports, accommodations and modifications and associated goals.

With the complexity of autism spectrum classification it is not uncommon for this to take more than one meeting.

When the meeting is done a “draft” IEP is complete. It is typed up without substantive modifications and distributed to all IEP members for review and comments. If any member of the IEP team believes it does no represent the consensus of the IEP team they may send a note as such and the IEP meeting is reconvened to assure that the IEP represents the consensus of all the members of the team. If there is any area where consensus cannot be reached any member of the IEP team may enter into process to have this discrepancy decided.

It is actually quite rare for issue to have to go to process, unless someone on the IEP team is grossly uniformed about IDEA and is unwilling to look at the regulations or the clinical or educations evaluation and recommendations.

Once the IDEA educational classifications made all behavior issues must have a manifestation determination done, if there are significant safety or behavioral issues these must be addressed in the IEP and in the intervening time the child must be provided education in a setting which is “safe” for all involved.

When all the areas that consensus that can be reach on are complete the IEP is signed by all members of the team and prior written notice of all areas were are a member of the IEP team feels IDEA and the needs or the child were not met is generated and signed to begin “process” for those areas. The IEP typically goes into effect as soon as it is signed, however there are circumstance where there many be some “time allowances” for item, which cannot be accomplished immediately.

I hope this provide a little insight into how the process is supposed to work, it sound complicated but actually when all IEP members focus on the needs of the child as the primary goal it actually goes quickly and smoothly. It is only when you have parents that do not understand their child’s need’s or administrators who try to interject administrative convenience issues that the process breaks down.

There are a few nuances and details that I left out but in most cases they are inconsequential unless the whole process breaks down.

bookwormde

 

[Schmeck]

bookwormde, we said the same thing, you just used a whole lotta more words, LOL!

 

[Libbyt]

I can relate to your "why" phase! I think for the first few years after our daughter was initially diagnosed, we were so busy trying to "fix it" and do something to help her, that "why" didn't even occur to us. Then we sort of hit a plateau with the therapies and I began to fixate on it - felt like I had to know a reason why it happened. But some things you just never get an answer to......Sally was initially diagnosed with developmental issues at age 2 1/2 - 3.......now she's 19 and just recently got a NEW diagnosis that explains a lot of the other things.

I also don't really believe that there's a state of acceptance vs. denial. You can't (or I can't anyway) just ACCEPT that your child is flawed and go on with life - you just learn to cope with it as best you can. It still hurts every day, to some degree - most days less than others.

I still have the days when I just want to tear my hair out, but then Sally has these moments of absolute clarity and insight and I realize that she understands things better than I do, better than other kids her age, better than the wisest of philosophers!

 

[bookwormde]

Schmeck,

Yes I tend to do that.

bookwormde

 

[MinnieVanMom]

I can relate to your "why" phase! I think for the first few years after our daughter was initially diagnosed, we were so busy trying to "fix it" and do something to help her, that "why" didn't even occur to us. Then we sort of hit a plateau with the therapies and I began to fixate on it - felt like I had to know a reason why it happened. But some things you just never get an answer to......Sally was initially diagnosed with developmental issues at age 2 1/2 - 3.......now she's 19 and just recently got a NEW diagnosis that explains a lot of the other things.

I also don't really believe that there's a state of acceptance vs. denial. You can't (or I can't anyway) just ACCEPT that your child is flawed and go on with life - you just learn to cope with it as best you can. It still hurts every day, to some degree - most days less than others.

I still have the days when I just want to tear my hair out, but then Sally has these moments of absolute clarity and insight and I realize that she understands things better than I do, better than other kids her age, better than the wisest of philosophers!

Very well said. I am right there with you. I don't really ever accept the autism but more that I just cope with the child I have not the one I had.

 

[BeckyScott]

This is how it works in our school district. Two different examples, because both of my kids had different experiences.

Youngest: Was in Early Intervention. Transitioned to SpEd preschool w/ an IEP, then into elementary with an IEP. Nobody questioned his diagnosis, he was already in the system so the transitions were dealt with smoothly. And as far as I can tell, he got all the "standard" autism stuff, without being put into a track.

Oldest: Parent requested eval in 3rd grade but school staff said they weren't concerned so they didn't pursue it. Parent requested eval in 5th grade. Parent had long annoying meeting with SpEd coordinator, classroom teacher, and principal because child was falling thru the cracks due to the inability of the school to *do something*, please. The school squeaks in evals in the last possible days it can.

The eval for math LD confuses me. The test they ran put DS slightly delayed, but only a couple of months and not enough for LD. I look at the test. It has very basic math, I see nothing beyond multi-digit addition and subtraction. This is not 5th grade work. At the time, they were doing multi-digit multiplication and division and decimals. I question it. I understand, yes, that it is a standardized test used all over the US, I get that and that was certainly pointed out to me, but I don't think it is a very good test. I don't expect our little ole school district to buck the system and say the standardized test used all over the US isn't accurate. However, people please, a child takes a test that has 3rd grade work on it, does pretty well, I don't see how that makes him not LD as a 5th grader. But anyway, nothing can be done about it.

There is discussion about DS's diagnosis (currently ADHD) and that I have no intention of upping his meds due to undesirable side effects. The Aspie screening is borderline, relying heavily on parent input, as the teacher hasn't noticed much. An IEP for OHI is put into place to shut up this particular parent.

After it is in place, the SpEd teacher (the one in the trenches) sees that DS has a great deal of trouble in math. She takes it upon herself to go beyond the IEP and tutor DS three mornings a week, before school, which the parent is more than happy to take him to because it confirms that she's not an idiot.

The teacher expects DS to remind her about his accomodations. DS can't remember to brush his teeth in the mornings much less remember to tell the teacher he gets to go to a different room for his test. The teacher routinely sends home graded work where DS is marked down for bad handwriting. (like spelling tests where she thinks they are spelled wrong, but they're not, he has messy writing) DS also has other things to do, for example he is supposed to go to the nurse after lunch to brush his teeth (long story) but they put it on him to remember, even though they know he doesn't remember stuff. I guess I'm supposed to call the school daily to remind them to remind him? The parent gives up and prays the next year will be better.

The "rumor" is that once the child gets older, like in the next year or so, the middle school and junior high like to try to drop IEP's if they're fairly mild ones. You know. If the child only has minor modifications, they try to figure out a way to dump the IEP. I spent way too long trying to get one in place.

While it seems like everyone else has a lovely system in place that works the way it's supposed to, that isn't the case for every school district. Ours follows the law. They know the law. However, I personally see a difference between the letter of the law and the spirit of the law. Maybe because I'm on the other side of the desk.

 

[bookwormde]

Beckeyscott,

What I posted is the way it is supposed to work, unfortunately in a majority of cases it dose not, especially if the parents or teachers are dealing with an area that they do not have a lot of experience with the IEP process or the specific area of need. Lots of kids still fall through the “cracks”. The district will still try to use “convenient excuses” which do not follow the regulations if they can “get away with it”.

bookwormde