Rejecting an IEP - for different reasons than most do

[pacrosby]

I'm actually not sure what kind of help I'm looking for here. Maybe just support. Maybe an opportunity to vent. It's such a long complicated story that I am not even sure I can adequately explain it without going on and on and losing people's interest in the process.

My ds, 7.5, is going into the 1st grade this year. He has a rather complicated medical/developmental history but is currently stable and looks/behaves like a typical child his age (with the exception that he is the size of my 5 yr old). Midway through Kindergarten last year his teacher expressed some concerns regarding his inability to master the sight words. He was doing fine in all other areas. She asked if I might consider an eval to see if 'something' might be interfering with his ability to acquire this skill and I agreed. The TEAM completed their evaluation and we met in June to discuss results and recommendations.

At the meeting my husband and I thought they must have mixed up the paperwork LOL The picture they painted was of a child who would have have been failing miserably in the classroom. Their results? Moderate-severe deficits in auditory processing, verbal organization/formulation and phonological processing skills. They reported that he didn't even possess the prerequisites to learn to read. Now keep in mind that this was not consistent with the K teacher's observations. She had simply been concerned about his problem learning sight words. Oh, and I forgot to mention....................I am a speech/language pathologist myself; worked for 16 years before starting my family later in life. While I understand that is not always easy to be objective when it comes to ones' own children, surely I would have noticed a few of the symptoms.

We walked away from the meeting in disbelief. I immediately did some testing on my own with vastly different results and subsequently embarked on an intensive home program this summer. Let me tell you how he's done....

He has kept a daily journal that he is most proud of. His entries have gone from <50 words to >200 words and of late he has been spelling 75% of those words correctly without any assist whatsoever. He has increased his sight word vocabulary from 24 (the kindergarten words) to over 250 (words are from the Dolch list, not a list of words I compiled myself). At present he can read Hop On Pop, Put Me in the Zoo, The Cat in the Hat, Go Dog Go, Green Eggs and Ham and Are You My Mother? BY HIMSELF!!! This is that kid who didn't possess even the most remedial skills to learn to read????? UGH

Yes he does possess some issues in auditory processing, I do not deny that nor am I surprised given his history, BUT the issues are not nearly to the extent that they suggest and, as a SLP myself who has spent much time working in the schools, I do not believe that direct intervention in a 1)small group setting, with a 2)heterogeneous group of children, 3)for what amounts for about 20 minutes once or twice a week (taking into consideration the time lost for transition from classroom to office/office to classroom, the time it takes the kids to 'settle in' and the time it takes to 'wrap up') will have any functional impact. Right now, what he needs is a staff who understands his needs and can help him to perform to his true potential.

Needless to say I rejected the IEP. In full. I don't want these people anywhere near this child. If they can't even determine what reasonable expectations are (I eventually found that they compared his performance to a age-based peers rather than grade-level peers which is a big mistake for many many reasons) and they can't recognize that certain accommodations might have been neccessary during testing to ensure that true potential was being measured (there's alot that I am not explaining if only for the sake of brevity......................ok so maybe it's still not so brief LOL) they most definately can not service him properly.

So what to do? I am hoping to forge a close relationship with his classroom teacher and help her to understand what is needed for him to succeed in the classroom. I will continue to provide home support in whatever areas are necessary. I do fear fhowever that he will not do as well in a classroom of 22 as he did one on one with me. I don't want to have to spend another 2-3 hours after a 6 hour day just to keep him on track. Makes me wonder if homeschooling is in his future.

Has anyone had this experience? When you felt your sped team was simply too incompetent to be trusted LOL

What a nightmare. I've already had 2 children go through this school (it's K-2) and they've barely heard a peep from me. Now suddenly I'm their worst enemy. Any words of encouragement are greatly appreciated

 

[bookwormde]

First thing is how did they determine an auditory processing differential, since it is rare for the school systems to spend that money to have a proper evaluation done. Not being able to do sight word is certainly a possible indicator of this and other executive function differences but without a good clinical evaluation how can anyone really know from 1 indicator.
I would be concerned also, not that they are necessarily wrong, but that they have not used the analytical breadth of tools to get really good recommendations as to how meet your child's needs.

Tactically it is best not to say that they are wrong, just that the evaluation was inadequate to understand the issues fully and while you do not have any objecting to informally beginning some supports, you just want to make sure the plan truly and accurately identifies all his challenges and gifts and fully meets his needs.

There is certainly nothing wrong with making sure the evaluation in complete and accurate and the supports are properly targeted for the needs.

It is also important to remember that because of your professional training and parental commitment, that he is and will continue to get many needs supported at home so the presentation in the classroom will likely be way above what would be average for a child with EF differentials.

bookwormde

 

[creativeamanda]

You have a right to request a indepentendt educational evaluation of your child with the school district footing the bill. I would start there. Tell them you disagree with the findings and request the private evaluation.

"an evaluation conducted by a qualified examiner who is not employed by the public agency responsible for the education of the child in question." 34 C.F.R. 300.503.

Request one.

 

[LMC]

Independent Eval at PUBLIC Expense
As the pp stated you have this right. Notify the district in writing that you disagree with their findings and you are requesting an independent evaluation at public expense. Make sure you include "at public expense" so you don't have to pay for it. I just had one done on my son approx $4000 and we have three more to go at their expense. Do this asap as they are on time schedules as to when this all needs to be done. If you can, try to find a developmental neuropsychologist in your area who would be qualified to do this. Specifically request a dev neuro psych or the name of a doctor in your request to see what they say. Good luck to you.

 

[pacrosby]

Thanx for your replies I appreciate anyone's willingness to offer their thoughts.

RE: whether another eval is "necessary", for both personal and professional reasons, I'm not so sure that at 'this time' it's the direction I want to take this. My ds has endured more than any child should ever have to as a result of his medical diagnosis. He spent his infancy/toddlerhood/preschool years being poked, prodded and man-handled by a variety of specialists on a rather regular basis and the experience has definately left a mark on more than his physical being. He is very wary of people he doesn't know, especially when they wear white coats (or they behave similarly to those who do LOL); he knows who is who and he knows when they want something from him. As a result, any kind of interaction between ds and someone functioning in a professional capacity becomes an exercise in anxiety for this child. This places the reliability of the results from any sort of performance based assessment in question. So I have to sit back and ask myself, what would 'really' be gained from more exhaustive testing, even if by a more qualified set of professionals.

I guess I really don't feel the need to have another professional prove that the Team was way off the mark as far as the academic testing. The progress he made this summer is really the only proof I need to satisfy any questions I may have had regarding his ability to learn to read. Ds is now way ahead of where my two older children were when they began 1st grade. The processing issues are another matter entirely of course and require a bit more consideration. In response to Bookwomde's concern that the Team did not have the resources necessary to differentially diagnose, while I would have to agree in theory that they may not have enough information to throw out today's trendy diagnosis of CAPD with any degree of certainty, a comprehensive receptive/expressive language assessment does in fact allow for one to identify auditory processing skills as an area of weakness. And the truth is, ds's auditory processing is an area of weakness, I'm not trying to deny that outright (they most definately are not deficient to the extent suggested by the Team however). Issues are most apparent in the area of recall. Is there more to it than that? Probably. Would addtional, more in-depth testing provide clarity to this weakness? Probably. But again I need to ask myself what I'd do with that information. I'm not looking for a label (heaven knows he's got more than enough of those LOL). As far as intervention options, from my own professional experience I know that mild-moderate processing deficits tend to be most effectively managed via a combination of classroom modifications/accommodations and compensatory strategy training. As a 1st grader ds has neither the awareness nor the maturity to be able to truly benefit from the teaching of strategies. So what does that leave us with? Classroom modifications/accommodations. Do I need another evaluation to gain a list of necessary classroom accommodations? Maybe I'll find that I am wrong but right now, being an SLP myself and knowing ds inside and out, I feel fully capable of determining what those might be and taking on the position of his advocate without the need for more official documentation.

It's probably hard for many here to understand my position. I know that it is in such sharp contrast to so many who are in a fight to have their children properly evaluated so that they may receive much needed services. Maybe part of the difference is that most people are concerned about the long-term and how inappropriate diagnosis/intervention will impact their child's education over the long-term. Given ds' diagnosis, we tend to focus more on the short-term. Not that I don't hope for a future. I do. The uncertainty of his condition just means that we only take one year at a time.

So I guess the bottom line is I really don't want services from these folks. They've lost my confidence. I can't even imagine putting him in their hands. What I need to do now is find a way to work cooperatively with his teacher and provide whatever support is needed at home. I guess I just fear how practical this will be. Is it going to be possible for me to provide him what he needs so he can be successful without spending another couple of hours (or more) after school. That just wouldn't be fair to him. Any thoughts on that would be greatly appreciated.

Thanks for taking the time to "listen"

 

[pacrosby]

Maybe I put this on the wrong forum huh? Would it be better on the Family board? Anybody know if it's possible to get the whole post moved or do I have to start all over again?

 

[taylor3297]

I know you didn't want your son to have another evaluation but in order to really know how weak or strong he is, you need to have an accurate result. Once you have that, then you can work on what accomodations you can provide at home and what maybe the teacher can assist with. Though you can't expect the teacher to spend a lot of the one on one time with him, due to other children in the class need her/his attention also, so you may need to set aside a block of time at home in order to work with him.

Now as to the results you were first given, I would not totally blame the inaccurate results on the person giving the test. You son, since you said he knows who is who, may not have performed his best in order to get the accurate result.

I used to test children for AG and there have been many times I have had children not do their best and their results of course were not accurate. So if necessary another test was given in order to get an accurate result and so accomodations to fit their needs could be created. Also, I have tested children who yes were bright but end up finding out that there was also an underlying learning disability.

Of course in the end you need to do what you think is best for your child. I wish you luck. Dealing with this type of issue is never easy.

 

[pacrosby]

Thanx for your input Taylor. I appreciate anyone's input even if we end up needing to agree to disagree Like I said at one point above, there is alot (alot!!) of information I'm not offering here in an effort to keep things as brief as possible. I do in fact have a very good feel for ds's strengths and weaknesses without subjecting him to another exhaustive round of testing. Perhaps you missed that I readministered much of the testing myself (or perhaps I never said that). Enough so as to get a true picture of what he really could and couldn't do and to determine what kinds might interfere with his ability to always perform to his true potential. Honestly, I don't believe that more 'professional' testing is always the answer anyway (if fact, truth be told, both personally and professionally I believe that we have all gotten into the habit of referring, testing and 'treating' alittle too much). Ds wasn't experiencing difficulties across the board last year in Kindergarten, it was only what appeared to be an inconsistency with sight words that concerned his teacher (I really am not in denial here LOL That really was the only issue). Now, seeing that he has, in two months this summer, mastered a list of 250 sight words, I'd say that wasn't really the issue they thought it was (the K list was a list of only 24).

As far as blaming the examiners, actually I can, and I do. They simply followed the 'recipe'. They approached this child in the exact same manner they approach every other child who crosses their threshold. They gave him the same exact battery of tests, administered in the exact same way and ended up delivering the same set of recommendations they would for any child who would have demonstrated similar results. They did not consult with his teacher to get more specific info about his performance in the classroom; they did not sit down with me to find out more about his medical/developmental dx and how it might/might not influence expectations; they did not attempt any form of differential diagnosis. As a professional who has worked in a similar capacity, I know that when I child is failing miserably on my testing I need to step back and figure out why. I need to talk to the classroom teacher and see if what I am starting to see is consistent with their observations; I need to perhaps consult with the parent. If things aren't adding up I need to step back alittle and figure out what things might be interfering with a child performing to to his true capacity and consider how I might control for those factors. It was the examiners' responsibility to make sure the results they presented were both valid and reliable. Putting a child through hours and hours of testing and then saying, "oh, sorry guess we need to do it all again" is unacceptable in my opinion. UGH!!!!! UGH!!!!! UGH!!!!! Sorry Please understand that I am not offering this up as an attempt to "argue" with you, I'm just providing clarification............................and thinking about it makes me crazy. So many examples of poor judgement. Why, they compared the results of his academic testing to that of a child a full grade or more AHEAD of him (he was 7.5 in a K class of children 6 - 6.5 yrs of age)! At the meeting the speech pathologist handed me a huge pile of handouts..............very basic handouts written for the average lay person (and yes she knew I was a fellow SLP). If it wasn't MY child, it might all be a bit amusing.

Anyway. I don't expect everyone to agree with me but I do stand firmly in my position. Right now, given that he's only a first grader AND the short-term goal of success THIS academic year AND the fact that I'm a speech/language pathologist myself and have worked 16 yrs with children who presented similarly AND the remarkable success of my intensive home programming this summer..........well, I feel more than confident going forth without additional testing.

So I'll ask my previous question again (in case this most recent reply and my subsequent response results in it being lost in the shuffle):

CAN I have this post moved to another forum or must I really compose it all over again???? I would really love to hear from people who have, due to incompetent sped departments (ok, so that's rather harsh I know), had to try and support their children at home. I'm interested in hearing how they minimized the negative impact adding another 2-3 hours of work to a 6-7 school day might have on a 1st grade child. I'm interested in hearing from parents who felt that perhaps pulling the child out entirely and doing it at home was the way to go. Just looking to swap stories and share ideas .

 

[LMC]

Well if you have the option to homeschool then you should consider it. there is no way your child will get the attention and one one one help he may need. Since you don't agree with the IEP then he doesn't have to be on one. However, to get any accomodations, you will have to come to some sort of agreement. I know you don't want additional testing and you stated you have the experience necessary to give input on this matter on his behalf but I don't know the ins and outs of the system well enough to know if they will consider the parents input as a professional (even though you are) statement or if they would require an additional testing since you don't agree with them. There in lies the rub. I did homeschool my special needs/LD child after he completed 1st grade (had already repeated k5) and he still could not identify or write his letters. It took three years to teach him his letters from memory and for him to be able to write them but what was the point of progressing in school when he couldn't read the text books? After a while, I placed him back in public school, which has not been a breeze but we will finally get some services this year that he truly needs.

 

[bookwormde]

the more you explain the more it sounds like whoever did the evaluation did it piece meal.
Some of the biggest and most important components are questionnaires filled out by you and teachers who a highly familiar with him. Quite honestly it sounds like they were trying to rack up billable hours rather than a broad based evaluation. I guess that sounds very synclinal but I do not know what other observation to offer. Most of the cognitive evaluation will not change much, so I would find out why so much of your and the teachers portion of the evaluation is missing and start with just that.

bookwormde

 

[GraceLuvsWDW]

To the OP, you are an equal member of the team and you can draw their attention to the points you have brought up here and question their testing. You can suggest the mods/supports you desire and see where it goes. It seems as though, with what you are not completely telling us here, he may have other mitigating issues. Try working with the IEP team, you have the complete authority to question and refuse the plan.

from Wrightslaw:

Federal regulations require that parents and school personnel act as equal participants in the development of a child's IEP and that the parents' participation in the IEP process must be meaningful.

"[T]he failure to receive and consider parental information, including evaluations they may obtain, directly denies parents the pivotal role they should enjoy in the development of their child's placement. This role includes not only providing evaluations or other information, but discussing such information. Consideration of such outside information also ensures that a program is individualized and provides a check on the judgments being made by school officials regarding the child." Community Consolidated Sch. Dist. No. 180, 27 IDELR 1004, 1005-06.

 

[GraceLuvsWDW]

Also, if you are concerned about your child being overloaded by a full school day + time working at home you can request a shortened school day. He can go perhaps half days and you fill in the rest of the day.

 

[SmallWorld71]

I'm actually not sure what kind of help I'm looking for here. Maybe just support. Maybe an opportunity to vent. It's such a long complicated story that I am not even sure I can adequately explain it without going on and on and losing people's interest in the process.

My ds, 7.5, is going into the 1st grade this year. He has a rather complicated medical/developmental history but is currently stable and looks/behaves like a typical child his age (with the exception that he is the size of my 5 yr old). Midway through Kindergarten last year his teacher expressed some concerns regarding his inability to master the sight words. He was doing fine in all other areas. She asked if I might consider an eval to see if 'something' might be interfering with his ability to acquire this skill and I agreed. The TEAM completed their evaluation and we met in June to discuss results and recommendations.

At the meeting my husband and I thought they must have mixed up the paperwork LOL The picture they painted was of a child who would have have been failing miserably in the classroom. Their results? Moderate-severe deficits in auditory processing, verbal organization/formulation and phonological processing skills. They reported that he didn't even possess the prerequisites to learn to read. Now keep in mind that this was not consistent with the K teacher's observations. She had simply been concerned about his problem learning sight words. Oh, and I forgot to mention....................I am a speech/language pathologist myself; worked for 16 years before starting my family later in life. While I understand that is not always easy to be objective when it comes to ones' own children, surely I would have noticed a few of the symptoms.

We walked away from the meeting in disbelief. I immediately did some testing on my own with vastly different results and subsequently embarked on an intensive home program this summer. Let me tell you how he's done....

He has kept a daily journal that he is most proud of. His entries have gone from <50 words to >200 words and of late he has been spelling 75% of those words correctly without any assist whatsoever. He has increased his sight word vocabulary from 24 (the kindergarten words) to over 250 (words are from the Dolch list, not a list of words I compiled myself). At present he can read Hop On Pop, Put Me in the Zoo, The Cat in the Hat, Go Dog Go, Green Eggs and Ham and Are You My Mother? BY HIMSELF!!! This is that kid who didn't possess even the most remedial skills to learn to read????? UGH

Yes he does possess some issues in auditory processing, I do not deny that nor am I surprised given his history, BUT the issues are not nearly to the extent that they suggest and, as a SLP myself who has spent much time working in the schools, I do not believe that direct intervention in a 1)small group setting, with a 2)heterogeneous group of children, 3)for what amounts for about 20 minutes once or twice a week (taking into consideration the time lost for transition from classroom to office/office to classroom, the time it takes the kids to 'settle in' and the time it takes to 'wrap up') will have any functional impact. Right now, what he needs is a staff who understands his needs and can help him to perform to his true potential.

Needless to say I rejected the IEP. In full. I don't want these people anywhere near this child. If they can't even determine what reasonable expectations are (I eventually found that they compared his performance to a age-based peers rather than grade-level peers which is a big mistake for many many reasons) and they can't recognize that certain accommodations might have been neccessary during testing to ensure that true potential was being measured (there's alot that I am not explaining if only for the sake of brevity......................ok so maybe it's still not so brief LOL) they most definately can not service him properly.

So what to do? I am hoping to forge a close relationship with his classroom teacher and help her to understand what is needed for him to succeed in the classroom. I will continue to provide home support in whatever areas are necessary. I do fear fhowever that he will not do as well in a classroom of 22 as he did one on one with me. I don't want to have to spend another 2-3 hours after a 6 hour day just to keep him on track. Makes me wonder if homeschooling is in his future.

Has anyone had this experience? When you felt your sped team was simply too incompetent to be trusted LOL

What a nightmare. I've already had 2 children go through this school (it's K-2) and they've barely heard a peep from me. Now suddenly I'm their worst enemy. Any words of encouragement are greatly appreciated

Just a few thoughts that popped into my head as I was reading. Please understand I am not questioning your judgement, just a few thoughts.
First, while I usually find the test to be very accurate, it is entirely possible that there was an error. I would seek an outside eval. to see what they have to say. My personal opinion (as both a SPED teacher who does testing and a parent of a child with auditory processing difficulties) is that a parent is not objective enough to do this kind of testing with their own child.
Second, we are required to use age based norms not grade based which can certainly throw off the results. All the results I've seen from other places such as Children's Hospital in Boston as well as private doctors have also used age based norms. However, for most programs it can often be as simple as clicking on a different button before printing out the report to get the grade based score. Perhaps they would be willing to share that information.
Third, while you say he doesn't need intervention, it sounds like that's exactly what he's gotten from you and that it has really helped! Perhaps some of the strategies you have been using could be incorporated into the regular ed classroom or on an IEP.
Lastly, I've been working with first graders for years and they all progress at varying rates. I have always encouraged parents to take whatever help they can get for their kids in these early years because they are so crucial and are the kids are much more receptive to the help at this age.
For some kids, learning to read moves at a steady pace. For the majority though, there are lots of peaks and valleys. Perhaps your DS has found his stride and will continue to make great progress. I would encourage you to keep open communication with his first grade teacher and see what she thinks.
Good luck! As someone who has been on both sides of these situations is can be tricky. I hope everything works out.

ETA: Just wanted to add that I made my comments based on your first post only before I read your most recent response. Didn't want you to think I was ignoring it.
One point from that post:
Both you and the classroom teacher are required to be at the meeting as part of the team so I am confused as to how they made these types of decisions without your input. If you were not included, that is a huge concern which needs to be addressed with the school.

 

[pacrosby]

Well if you have the option to homeschool then you should consider it. there is no way your child will get the attention and one one one help he may need. Since you don't agree with the IEP then he doesn't have to be on one. However, to get any accomodations, you will have to come to some sort of agreement. I know you don't want additional testing and you stated you have the experience necessary to give input on this matter on his behalf but I don't know the ins and outs of the system well enough to know if they will consider the parents input as a professional (even though you are) statement or if they would require an additional testing since you don't agree with them. There in lies the rub. I did homeschool my special needs/LD child after he completed 1st grade (had already repeated k5) and he still could not identify or write his letters. It took three years to teach him his letters from memory and for him to be able to write them but what was the point of progressing in school when he couldn't read the text books? After a while, I placed him back in public school, which has not been a breeze but we will finally get some services this year that he truly needs.

Actually the school/teacher is more than willing to work with me without a formal doc 'forcing' their hands. It's a relatively small K-2 school in a small town. And to be honest with you I'm not so sure I'd want to HAVE to 'legally' impose the necessary modifications/accommodations. If a classroom teacher refuses to 'help' my child without being forced to do so by some legal document, I'd be running fast and furious.

I know homeschooling is never the 'easy' solution. I'm happy to hear you are pleased with the direction things are going with your own son.

 

[pacrosby]

the more you explain the more it sounds like whoever did the evaluation did it piece meal.
Some of the biggest and most important components are questionnaires filled out by you and teachers who a highly familiar with him. Quite honestly it sounds like they were trying to rack up billable hours rather than a broad based evaluation. I guess that sounds very synclinal but I do not know what other observation to offer. Most of the cognitive evaluation will not change much, so I would find out why so much of your and the teachers portion of the evaluation is missing and start with just that.

bookwormde

The teacher did fill out a behavioral questionnaire, as did I. That was pretty much the extent of it. I don't think they were trying to rack up billable hours since they all work full-time for the school as salaried employees. It is all a bit baffling isn't it?????

 

[pacrosby]

Also, if you are concerned about your child being overloaded by a full school day + time working at home you can request a shortened school day. He can go perhaps half days and you fill in the rest of the day.

It's good to hear that that may be an option. I'd hate to pull him out entirely. We'll just have to play it by ear and see how things play out.

In response to your previous post............I did in fact just refuse the plan outright. I wrote them a 5 page explanation as to why and sent a copy to the Team liason, the principal, the classroom teacher and the town's sped administrator. The liason (who actually is new to the position as of last week, the woman who led the Team in June left) called me a few days ago and was very accepting of my decision. She went as far as to say that she understood my concerns completely. I will be meeting with the classroom teacher this afternoon. So far, based on the 2 telephone conversations we have had, it appears that she is more than willing to do whatever she can to help him succeed in the classroom.

As an aside, I had an opportunity to talk to the reading specialist who administered the DIBELS to ds yesterday to quickly assess his reading (administered to all the children in the first few weeks of school). She was in fact a part of the Team last spring. The results? He "blew her away" (her words). She said she simply could not believe how remarkably well he did and went on to say that the only section he scored alittle low on required him to segment spoken words into phonemes. His problem? He was SPELLING them instead

Guess we've put that piece to rest

 

[pacrosby]

Just a few thoughts that popped into my head as I was reading. Please understand I am not questioning your judgement, just a few thoughts.
First, while I usually find the test to be very accurate, it is entirely possible that there was an error. I would seek an outside eval. to see what they have to say. My personal opinion (as both a SPED teacher who does testing and a parent of a child with auditory processing difficulties) is that a parent is not objective enough to do this kind of testing with their own child.
Second, we are required to use age based norms not grade based which can certainly throw off the results. All the results I've seen from other places such as Children's Hospital in Boston as well as private doctors have also used age based norms. However, for most programs it can often be as simple as clicking on a different button before printing out the report to get the grade based score. Perhaps they would be willing to share that information.
Third, while you say he doesn't need intervention, it sounds like that's exactly what he's gotten from you and that it has really helped! Perhaps some of the strategies you have been using could be incorporated into the regular ed classroom or on an IEP.
Lastly, I've been working with first graders for years and they all progress at varying rates. I have always encouraged parents to take whatever help they can get for their kids in these early years because they are so crucial and are the kids are much more receptive to the help at this age.
For some kids, learning to read moves at a steady pace. For the majority though, there are lots of peaks and valleys. Perhaps your DS has found his stride and will continue to make great progress. I would encourage you to keep open communication with his first grade teacher and see what she thinks.
Good luck! As someone who has been on both sides of these situations is can be tricky. I hope everything works out.

ETA: Just wanted to add that I made my comments based on your first post only before I read your most recent response. Didn't want you to think I was ignoring it.
One point from that post:
Both you and the classroom teacher are required to be at the meeting as part of the team so I am confused as to how they made these types of decisions without your input. If you were not included, that is a huge concern which needs to be addressed with the school.

We actually WERE at the meeting. With our mouths open in disbelief LOL The problem was that the Team seemed unwilling to accept the possibility that they could be that wrong. I think they passed me off as "the parent in denial"; unable to believe that her child could be so deficient. As far as to why they didn't put more stock into what the teacher said, I have no explanation.

RE: your previous thoughts: While I agree that it is generally not advisable for a parent to use their own testing for the purposes of true diagnosis, I don't agree that there is nothing to be gained from it, especially in the case of assessments that are as straightforward as the CTOPP (reading), PAL (phonological awareness) and the CELF (speech/language). I do think I was able to be objective 'enough' to gain the info I needed. No doubt it guided me in the development of a summer program (and a very effective one at that if I do say so myself LOL)

As far as 'having' to use age-based norms, just for the sake of friendly discussion, while I will agree that clinicians/examiners are sometimes limited by the normative data a test offers, sometimes it is necessary to make adjustments if the results are to be valid. I don't think anyone will argue that when testing a Kindergarten child's academic skills examiners have to compare the results to K-aged children. If the test doesn't allow for grade-level comparisons then they simply have to step outside of the box and break protocol. Even with tests that assess developmental skills there do exist those occasions when examiners need to think about a child's medical/developmental history. They can't always just go the standard route (and if they claim they do, they are incompetent LOL). You all just have to trust me when I say that ds' medical dx has an impact on developmental expectations and renders straightforward chronological age comparisons questionable at best. Setting appropriate expectations was key and in my opinion the Team's inability to do so was a huge contributing factor here.

Lastly, it's the "direct intervention by the school sped team" that I don't want LOL, not intervention of ANY kind. They have proven that they can't be trusted (can you imagine if I had accepted their results/recommendations without question???? That is a frightening thought). No, I'm not saying ds does not have ANY needs. Forgive me if I led you to believe I thought he should be allowed to go off skipping into the sunset without any support whatsoever. No, I will be working with the teacher to develop an effective home program and help her help him in the classroom. Fortunately the reading piece has pretty much been taken off the table as an area of concern since he was just screened yesterday and found to be well ahead of the game. Did he simply 'hit his stride'? I know you are trying to give the sped team the benefit of the doubt but I, sadly, can't agree. I was told in no uncertain terms that based on their evaluation in May he lacked the prerequisites to effectively learn to read. Nope, plain and simple..............they were very wrong. It is a bit disconcerting to think a team of professionals could be so wrong in their assessment, I would have to agree. I'm honestly not surprised by pp's who have expressed some degree of doubt; who perhaps suspect that I just don't want to believe the truth. It was not my intention here but who knows, perhaps this whole discussion might open a few people's eyes. People routinely accuse professionals of "underdiagnosing" resulting in the denial of much needed services. I'm here to tell you that the opposite happens as well. I've seen it happen in my professional life and now I'm experiencing it in my personal life. Just please be aware.

Anyway...........I really do thank you so much for the 'thoughts'. You cited CHB so you must be in MA as well. We just love CHB (for obvious reasons). They are the very reason ds lives today

 

[SmallWorld71]

We actually WERE at the meeting. With our mouths open in disbelief LOL The problem was that the Team seemed unwilling to accept the possibility that they could be that wrong. I think they passed me off as "the parent in denial"; unable to believe that her child could be so deficient. As far as to why they didn't put more stock into what the teacher said, I have no explanation.
Sounds to me like maybe they didn't believe the classroom teacher or trust her judgement for whatever reason. Unfortunately this is something I see too often with people writing someone's thoughts off because of past histories.

RE: your previous thoughts: While I agree that it is generally not advisable for a parent to use their own testing for the purposes of true diagnosis, I don't agree that there is nothing to be gained from it, especially in the case of assessments that are as straightforward as the CTOPP (reading), PAL (phonological awareness) and the CELF (speech/language). I do think I was able to be objective 'enough' to gain the info I needed. No doubt it guided me in the development of a summer program (and a very effective one at that if I do say so myself LOL)
I don't doubt that you got good info., just wanted to make sure you weren't using your testing as the only means of opinion. I know with my own kids, I tend to be biased and often have to get a little reality check from their teacher.

As far as 'having' to use age-based norms, just for the sake of friendly discussion, while I will agree that clinicians/examiners are sometimes limited by the normative data a test offers, sometimes it is necessary to make adjustments if the results are to be valid. I don't think anyone will argue that when testing a Kindergarten child's academic skills examiners have to compare the results to K-aged children. If the test doesn't allow for grade-level comparisons then they simply have to step outside of the box and break protocol. Even with tests that assess developmental skills there do exist those occasions when examiners need to think about a child's medical/developmental history. They can't always just go the standard route (and if they claim they do, they are incompetent LOL). You all just have to trust me when I say that ds' medical dx has an impact on developmental expectations and renders straightforward chronological age comparisons questionable at best. Setting appropriate expectations was key and in my opinion the Team's inability to do so was a huge contributing factor here.
I currently work with a first grader who was tested as part of her 3 year re-eval at the end of last year. She was not having ANY problems in K. But, because she did an extra year of pre-school and started K late the results made her appear lower than she really is. The parents wanted her IEP to continue, so she still has one. Does she need my help? No. But there it is. I don't quite get the reasoning behind this one.

Lastly, it's the "direct intervention by the school sped team" that I don't want LOL, not intervention of ANY kind. They have proven that they can't be trusted (can you imagine if I had accepted their results/recommendations without question???? That is a frightening thought). No, I'm not saying ds does not have ANY needs. Forgive me if I led you to believe I thought he should be allowed to go off skipping into the sunset without any support whatsoever. No, I will be working with the teacher to develop an effective home program and help her help him in the classroom. Fortunately the reading piece has pretty much been taken off the table as an area of concern since he was just screened yesterday and found to be well ahead of the game. Did he simply 'hit his stride'? I know you are trying to give the sped team the benefit of the doubt but I, sadly, can't agree. I was told in no uncertain terms that based on their evaluation in May he lacked the prerequisites to effectively learn to read. Nope, plain and simple..............they were very wrong. It is a bit disconcerting to think a team of professionals could be so wrong in their assessment, I would have to agree. I'm honestly not surprised by pp's who have expressed some degree of doubt; who perhaps suspect that I just don't want to believe the truth. It was not my intention here but who knows, perhaps this whole discussion might open a few people's eyes. People routinely accuse professionals of "underdiagnosing" resulting in the denial of much needed services. I'm here to tell you that the opposite happens as well. I've seen it happen in my professional life and now I'm experiencing it in my personal life. Just please be aware.
This may not be the case with your DS's school, but at our school we have 4 Spec. Ed. teachers, 2 Speech Therapists, 2 OT and 1 PT. We also have 3 Title 1 reading teachers because we are a Title 1 school. There is also a Psychologist and an Adjustment Counselor. We are a small town, but there is only 1 Elementary School (PreK to 5). The people who do the testing aren't necessarily the ones who will be working with the child. Perhaps there is a way for your son to get the supports that you think he needs without having to involve those who did the testing on your son? Or perhaps there are things that the classroom teacher can implement with just minor assistance/ consult from the Spec. Ed. staff? Given that he made such great progress over the summer, there must be some ways to implement those strategies into school?

Anyway...........I really do thank you so much for the 'thoughts'. You cited CHB so you must be in MA as well. We just love CHB (for obvious reasons). They are the very reason ds lives today

All 3 of our kids have been at CHB for some reason or another. The middle one for a couple surgeries and the other 2 as a result of their more "exuberant" nature.

 

[bookwormde]

Yes baffelling, for a broad based evaluation, there are typcially 4-6 sets of those questionares, I hope you can get them to really listen. Just think what it would be like without your understaning and training.

bookwormde

 

[Brer Shay]

My DS just started middle school this year. We received his dx of Asperger's when he was in Kindergarten. The initial response of the school was to provide an IEP with all sorts of interventions and pull out services that would go into effect in first grade. For an assortment of reasons, DH and I chose to reject all of them except one -work with a speech/language pathologist for 40 minutes every six days (which has VERY beneficial to him). Every year I was able to have a very good relationship with his teachers and work through strategies that were most helpful to him in the classroom at the time he needed them. Some of them were consistent for 2-3 years, some were only needed for 2-3 months. I always made it clear that I wanted to partner with the teacher to help DS learn and not be a drain on classroom resources to the extent that was feasible.

That course of action OFTEN led to 3 hours of work with him after school. I will not say that it was fun. I will say that many times I didn't want to do it. I will say it was often frustrating and very limiting to our family. I often felt bad for him that he didn't have the play or "off" time that a kid should have. I also would make the same choice again without hesitation.

We were fortunate to work with teachers who were willing to work with us, I can't ignore that. An IEP followed to the letter wasn't going to be in his best interest long term. At that age and with his development, an IEP (without constant changes and updates) wasn't going to meet his actual needs.

From DS perspective, he really didn't recognize the extra hours of work as being unusual because it started so young. To him, it was just part of school. Most days (but not all), he didn't feel deprived, it was just our routine. He has learned how to help himself learn and that he has the ability to work hard and diligently.

He has just started middle school, and we're in a "watching" mode with him. His IEP is down to itinerant language evaluation. He's moved passed the need for most accomodations, though that might change. He's also learned that he needs to meet the same academic expectations as everyone else.

That's how it worked for us. You seem to feel strongly in your opinion and plan for him. If you are willing to spend a portion of your day "reteaching" what he needs to know, it can work. My only other suggestion is to not completely reject an IEP. Have one with VERY minimal goals, but have one so that if you fine you need other evaluation or services for him you can get them more quickly because he's already "in the system."

Good luck with the coming year.