had the meeting today

Also, any insight as to why they would do a complete about-face since our last meeting.

We asked for self contained for areas of disabilities, told it wasn’t on their continuum, wasn’t possible. Today, it was the first thing they offered.

Last time we were told they would fight us on the outside psychoed eval. Now they are offering one at their expense. They are also offering a neuropsychiatrict eval at their expense as well as a CAPD eval at their expense. Several months ago we were told that we could do whatever we wanted at our expense but they did not have to consider the results and if he was found to have CAPD, it would not affect how he was serviced through the school. We were told that they believed they were doing everything they could for our son.

Now, I’m being offered things I’ve never been offered before.

What happened? My husband smells something funny here. When I got home I was thrilled with our progress, but when I went to explain the meeting to him, all the red flags went up. Should we be suspicious? What could be happening?

Do you feel that the anxiety comes from the LD? My understanding was that once a child qualified for SPED, the IEP is developed based on his specific needs— so why slap on another label? What kind of support could they offer? In our district, the ED label is hard to lose.

I do believe that the anxiety comes from the LD. When he gets overwhelmed by things he does not understand or cannot keep up = anxiety.

My understanding of them wanting to use the ED label was that because his WISC and WIAT only show that he is eligible for reading comprehension, yet he truly struggles in the classroom, ED label would guarantee that services could continue despite the test scores barely qualifying him under SLD alone.

As far as services that they would be willing to provide, that’s a good question. They said all psychological counselling would have to take place privately. My guess would be to have grounding (with the state) that he needs his current LD services to deal with the school day.

I am truly, truly skeptical about this whole ED thing.

Despite all my complaining that I’ve done that they are not doing what’s right for my son, I prayed last night that I would walk into that meeting and they would tell me that he no longer qualified at all so that we could just be done with this nightmare.

In my state, Mass, ED diagnosis on the IEP form means serious mental illness, or emotional(not just behavioral) disturbance in a child. Unless your outside psychologist gave your child a mental health diagnosis, I would not want the school to use that category, particularly if they weren’t going to pay for the counselling that the diagnosis indicated.

Speaking strictly as a parent here, I wish I’d done this for my Gen. Anxiety/borderline OCD son. Rather than get him the help, I was worried about the label. Now he is living the greater problems of a young adult without a safety net. Also, there are way more services for the family of ED labels than LD labels. LD kids *seldom* (I didn’t say never) qualify for things like respite care. As the rocky road of pre-adolesence took its toll, I could have used that service. He could use some services now—like vocational rehabilitation. All my remedial work makes him look like he should be able to do more than he can do emotionally.

At the risk of being accused of needing a 12-step program, I believe now (8-9 years later) that I actually enabled him. It created a long row to hoe. My lack of trust for school actually did him harm. (It looks, retrospectively, like denial.)

Now that I’ve got *that* off my chest—I’m sure his teachers could have written some of these BB messages and been justified. I know I wrote some about them. In the end, we have what we have: reality.

My advice:
Do what best serves your child and handle negatives when they appear—not by looking for them beforehand.

Thanks for your candid response.

What services would he actually be entitled to? I was sort of taken back by their introduction of the label that I did not ask in depth about services.

What is respite care?

I really feel that every time we take one step forward, we are taking two steps back, and now I’m scared.

What can I expect to unfold in the coming years especially if I take the path that you chose?

With the half-baked approach we have gotten so far, I really hesitate letting the school have any more extensive control over his future.

How do I know if I am in denial or if my hesitancy is justified by knowing my child the best?

who can visit your school and counsel you…and one that you can trust.

Respite care is a service, usually at the county level, that provides funds for well-trained care providers so that you or your family may do things and not be worried about your disabled-child’s care. Difficult children are usually difficult to care for and take a toll on parents and siblings. We worry that care providers can handle them and so we rarely leave them in the care of non-family members. Siblings sometimes suffer for lack of sufficient attention to their needs. Having good care for the child w/a disability can go a long way to remedy some of these needs.

Despite caring people on the BB, no one can truly analyze this situation without being there and observing all concerned.

About thirty years ago, a self-help book called “I’m Okay, You’re Okay” was popular. The only hitch in the process is that all but about 1% of folks (the true Ghandi types) have what it takes to be objective with self. We just carry too much baggage to really reflect honestly.

Go talk to somebody. I wish I’d listened. We can love our children too much to really see them for what they are.

He will receive the language arts without the ED label-correct? WHy not go with that alone for now and ponder this longer-it sounds like a big decision-have them set a date to remeet if you feel you need a deadline

Does he start middle school next year-is this in any way related?

I also had my sons meeting today and appreciated hearing how different things will be next year in middle school-I plan to observe—and decide this spring on whether to let him loose then or keep him in services. I could have decided to stop services today but felt this was the best case scenario

Find out whats in store next couple years service wise

IDEA states that the team must consider more then test scores to determine eligibility. The team should consider observations in the classroom and classwork. It sounds like the team could qualify him based on his struggling in the classroom.

If his anxiety is caused by inappropriate services for an LD then changing the services may lessen the anxiety. I would wait to see if the anxiety lessens with appropriate services. Also, they are also offering outside evaluations. The neuropsych. could give input into the anxiety. I say hold off until all outside evaluations are in.

One thing to be careful with IEE’s sometimes the SD tell you that you have to go to a certian outside specialist. Can someone recommended by the School District really give a unbiased opinion. A friend interviewed a neuropsych. on the districts list of two and asked how she got on the list. The neuropsych. siad the Special Ed. Dir. had been her 2nd grade teacher. The other person on the list I knew her background and would never consider her to be qualified as a neuropsych. The parent went to a neuropsych. she selected and the neuropsych came up with a diagnosis that I doubt the other two would have come up with.

Helen

NT

What if your (MA) child DOES have a dx from an outside professional (neuropsychologist) of Generalized Anxiety Disorder? (ADHD/Inattentive and LD/NOS also)

Are we heading for new and different trouble with this dx?

Karen

It seemed to me that he was more ADD than Emotionally Disturbed. From my experience, working in a self contained class for ED kids is a nightmare for both the teachers and the kids, it is like a powder keg ready to blow at anytime. I have been spat on, slugged in the face, etc when one of the kids went off.. The tension in this kind of a classroom can cause your child more anxiety…it sure made my blood pressure go up… The kids that are truly ED belong in this classroom not a kid who has anxiety. I have seen people with ADD battle with anxiety because of their minds going 24/7 and they feel overwhelmed. I would suggest the OHI label over the ED label.

My son has add/inattentive and is qualified for sp.ed under Other Health Impaired. He is now in middle school, 8th grade this year.
I agree with waiting until all the evals are in as far as making decisions about the emotional thing. It seems with add you could go with the OHI label and access services as you feel necessary, it’s frequently stated that a multimodal treatment plan of add/adhd kids is the ideal and this can include counseling.

I know you are suspicious of the school because of the past way they have been dealing with you. Perhaps they had an audit or something over the summer so felt they had better straighten up. Don’t know, but I do know as long as they are offering, get all you want in writing.

Best wishes.
Amy

When my 12th grade son was in 6th grade, he had a lot of anxiety due to level of service, the type of other kids in self contained, self esteem, etc. We chose to provide therapy privately, had testing done privately, only shared with the district what would move our own agenda and not the entire extent of his anxieties. Looking back, it was exactly the way to proceed and his improvement was steady and incremental.

Having said that, if the only way I could have gotten services in school that were needed was through an ED or OHI label, who cares? Don’t mean to be flip, but really, people do not generally go through one’s school files (sometimes you wish they would!). If you can’t *lose* the label, but get the services needed, the ends justify the means. Sometimes it is the way we parents feel about the label — the worry, the shame — that really needs to be addressed in private therapy. Only one opinion.

First, all of the stakeholders need to agree on a label that will fit; why can’t you use the outside eval. already done, if the schools’ eval. doesn’t indicate LD enough for service? I agree with pattim that often classes for students with the ED label are fairly restrictive, and don’t offer too much academic remediation.

Lu Lu,

One thing about all of this. Kids have a way of living up to their labels. I see it all the time with my son. Some people have categorized him and when he is with them he acts like they expect them too. He acts different with others.

You need to have evaluation done by a physician. If he is suffering from some type of an emotional disorder it needs to be addressed. I am not convinced the school is the best place to have an issue like this dealt with. The school should be getting direction from an independant, objective expert on emotional disorders. They shouldn’t go around slapping on labels that may or may not be correct. They are not qualified to make such a diagnosis.

You know I was ranting about lack of self contained LD classrooms at my son’s school too. I was talking to a mother whose child is now in fifth grade. Best diagnosis seems to be high functioning autistic. But in Kindergarten, before mother intervened with dietary modifications, they were told he would probably need to be institutionalized eventually. He was put in a self contained classroom. He was moved out in 3rd or 4th grade. This discussion made me see that at least in my district my son would never fit into a self contained classroom. If he cannot suceed in a regular classroom with resource room, we will need a private placement for LD children.

I guess what I saying is that you need to see whether what they would give you with which ever label will really help your son. And think about creative ways to get him the help he needs. For example, my son is doing reading with the lowest reading group in his regular class and then when the other kids do seat work, he is going to resource. He will get more individual attention with a teacher better trained in reading instruction. He will miss writing in the resource room doing it this way but his regular classroom teacher is the 4th grade resource for writing (she teaches the other teachers to teach writing).

Beth

I don’t know how you sort all this out but I think a beginning place is a professional you feel has your best interests at heart, as well as being competent. At times, the school has been able to do that–I think the teacher the ESE specialist recommended for my son for this year is exceptional. But I am the one who has taken the lead most of the time—it was my insistence that got him evaluated for a soundfield system. Noone ever had suggested the possibility, even though he had a diagnosed CAPD.

I also think you need to be aware that having an LD—and not being able to perform as well as other children does not result in all children having anxiety. My son is about as behind as your son and does not have anxiety about school. This does not mean he loves school by any means. And he is embarassed by his spelling—he doesn’t want other kids to see how poorly he spells. But still I would not say he is anxious. I guess all I am saying is that the anxiety may be something distinct from LD and need to be managed somewhat differently.

Beth

I see nothing wrong with the OHI label it has been useful for both of my boys. We too are in Illinois. My oldest son is dx’d ADD, inattentive type, CAPD, and dyslexia. He qualified for a self contained classroom for reading, writing, and math in middle school and made great strides. This year he is in all regular ed classes with a resource room. Besides the resource time which is 55 minutes a day, most of his teachers have offered before and after school help. He is doing very well in 3/4 of his classes and is doing fair in his lit class. My youngest son dx’d with PDD-NOS is also served under this category. He does meet their criteria for an SLD but due to the other issues such as anxiety he is served under OHI. They chose this category because it best covers all his issues, language, social, ect. I would be leary of the ED label only because at least in my district I have only seen it applied to truly unruly students. These students are placed in a self contained class together and from what my kids tell me they don’t get much accomplished due to behavior issues.

Agree with Lisa M. I would be leary of an ED label unless you and a private psych. agree with significant emotional disturbance best describes why your child needs special ed. Schools are apt to then say the problem is one in the mental health arena and the parent’s health insurance will have to cover all the intervention.

Wow, what a great range of opinions and advice. I thank you all for your support. You “guys” are the best and always have great suggestions!!!!

I guess the first step will be discussing all of this with my son’s private psychologist today during his regular appointment. He will hit the roof though. I told him a couple of weeks ago that I had a feeling that they would try to force us in this direction (ED label). He said he really didn’t think so because the anxiety is situational and is not taking over his daily life. It revolves around challenging situations for which he has limited strategies.

I NEVER considered my son to have an anxiety “disorder” but I will ask today if the psych would classify it as a disorder.

Now for the other concern :

History: last IEP meeting postponed to consider neuropsych’s (at our expense) findings. Neuropsych completed in May (her diagnosis = PDD & other findings dyslexia, CAPD and some other little tidbits here and there). Pediatrician and private psych say no way to PDD.

I call the school psych and ask what I should do because I don’t want to submit a dx that we don’t agree with, but the neuro has some recommendations and the dx of dyslexia and such that I WANT to write goals and objectives to.

She and the sped adm. say I have to submit the report for consideration if I want goals to be written from it.

Yesterday, all of this happens because of the neuro’s report. We decide not to put the report in his file but keep the new WISC, WIAT and WRAML.

I’m feeling that I have been duped in order for them to see the report so they could lead me down the path to the ED label because they don’t know what else to do with him? My husband thinks maybe this is their “out” to the situation. I am just plain confused and scared at this point.

He is most CERTAINLY NOT a behavior problem and the anxiety is self-contained. He is hard on himself when he can’t get things right. I just can’t see saddling him with this label.

and maybe Im not understanding the timeframe, but if the school changed their tune after hearing a PDD dx, I am not surprised.

I too have heard ED classes are where behavior problems tend to be the norm-truth or fiction? But since that appears to be a widespread interpretation, you have to think twice.

OHI? I have no preconceived notions-heck, I had to ask what it was!

We all hear that children with LDs are more vulnerable to a variety of challenges and we all hope that our own children will make it through them successfully. Susan brings up a good point though. What happens if, despite our best efforts, our child’s struggles are overwhelming in the future. What happens if keeping a job or even emotional/mental stability is just too difficult. What happens if we can’t help them? Having the labels in place would be benificial then. And… what is the concern regarding labels sticking? Who will actually know about the labels? I’m not claiming to have the answers but Susan’s comment gave me some questions.

If you don’t label him ED today,does this mean he can never be labeled ED again?? If the IEP isn’t addressing his anxiety,then having an ED label without goals to decrease anxiety isn’t going to be worth a whole heck of a lot for your kid.
Now,please forgive my skeptism,and I know that I can not know your situation entirely,and it is possible your school has his best interest at heart, but you do know the school will recieve MORE MONEY from the state for him,being ED,rather then SLD,right?

I don’t care what they call it,are they addressing these issues in the IEP?? If the answer is no,there is something missing.

Little Lulu, You didn’t tell anyone at the school about the PDD dx did you? I posted you strongly a while ago strongly urging you not to say anything about this and how it could haunt you for years afterward. You may have missed the post—the Board had moved on quite a bit by the time I posted. If you didn’t tell—good work—keep it up. In the meantime, do what I advised in the post. Demand the misguided neuro psych to delete all sections of her report that mention PDD. For good measure, go through the report yourself and edit it and send the edits you want to her. Then have her send the new version (same date as old) and submit that to the school if you can’t just submit the scores (better solution). The psych should comply—it’s no skin off of her and hardly any work if you supply the edits—it’s on her computer and the cut function is easy to use. If she raises a fuss, point out to her that you have a doctor who disagrees and question her authority to give what is essentially a medical diagnosis. You could be vaguely threatening about practicing medicine without a license. Do whatever it takes—you absolutely do not want pieces of paper floating around with a diagnosis for your child that you and a doctor believe is fundamentally in error, particularly when the dx could have adverse consequences for him for years to come. To make sure you see this, I’ll post above as well.

How do you find out which categories get which amount of money? Both my boys are serviced under OHI which I don’t think would get the school much money. I would think for at least the youngest they would get more money under a different label such as Autism. His diagnosis on his school record is PDD-NOS, which in some districts is served under the Autism label. I am not worried about the services since I think his issues are being met, just curious as to how the money is figured out. The youngest is in a self contained LD class. He also get 60 minutes of 1 to 1 speech, 30 minutes of group speech, and 30 minutes of social work services a week. He can exhibit some “odd” behaviors and no one is trying to label him ED. I think this whole thing can be rather very confusing.

Go to your state web site and look under education statutes,and the funding. Usually the appropriations are there. It is for my state:-)

No, I did not know that they will receive more money if he is identified ED.

Thank you for the heads up.

Socks, ya know the one thing that keeps going through my mind with this whole thing? How am I going to explain this to him when he gets older that we all considered him to be emotionally disturbed.

This child’s self-esteem is shredded enough with the LD. I just can’t do this to him. Topping it all off, I do not trust the school enough to handle it properly.

This is very good to know. For now the self-contained will be instructional language arts with two other children. According to the administrator, though, these two are supposedly significantly more disabled than my son.

If I ask who these two are, can they tell me?

Absolutely NO placement for self-contained ED. I have heard horror stories myself.

Lulu — this may go one of two ways. It could be a tempest in a teapot and all be blown over by next month; and it could affect your child’s entire life. Hard to tell because many factors are involved.

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I copied the following from “skeptic“ ‘s post. He/she is *absolutely right*. Practicing medicine without a licence is illegal for exactly this reason — you get diagnoses that can be actively harmful.

Demand the misguided neuro psych to delete all sections of her report that mention PDD. For good measure, go through the report yourself and edit it and send the edits you want to her. Then have her send the new version (same date as old) and submit that to the school if you can’t just submit the scores (better solution). The psych should comply—it’s no skin off of her and hardly any work if you supply the edits—it’s on her computer and the cut function is easy to use. If she raises a fuss, point out to her that you have a doctor who disagrees and question her authority to give what is essentially a medical diagnosis. You could be vaguely threatening about practicing medicine without a license. Do whatever it takes—you absolutely do not want pieces of paper floating around with a diagnosis for your child that you and a doctor believe is fundamentally in error, particularly when the dx could have adverse consequences for him for years to come. To make sure you see this, I’ll post above as well.
**********************

OK, now, you say you don’t trust the school. And you say your husband smells a fish.Trust your instincts. There are things going on below the surface. What those things are you don’t know, and again it may just be ignorance and laziness, but it also may be active damage. So trust your instincts not to sign or accept anything until it’s spelled out.

I would really worry about the ED diagnosis and the offer of a self-contained classroom. As many people have pointed out, the ED diagnosis is for kids with severe problems, and those classrooms can be violent and stressful and learning may be limited. Even if a kid really does have an anxiety disorder, I wouldn’t like to put him there unless there was no other choice. I tutored a kid with a genetic disorder (Kleinfelter’s) who had been driven into anxiety after two years of a very ineffective Grade 1; he was then in the ED classroom for five years. He made zero academic progress, having the same reading achievement (about 2.0) and math achievement (essentially zero – scored 1.5 by putting two fingers on a ruler, lost without it) at age 12 after “Grade 6” as he had had at age 6 after the first grade 1.

My worry is the following possible scenario: you sign this and the school promises you certain services. Either they don’t provide the services, or the services are provided piecemeal and by non-professionals so he doesn’t make any progress. You go back to the school and demand better services. The school then points to the ED and self-contained which you signed, claims he is a disruptive element in the classroom (leaving you with the impossible task of proving a negative), and transfers him to a school with a self-contained ED room.
Something similar was done to us — my daughter had a perforated appendix and peritonitis and two major abdominal operations. She was immobilized with IV and drainage tubes and was also very weak. A severely retarded teenager was moved into the same ward, and her erratic behaviour as well as her physical size frightened my daughter. When I complained, they moved her to a different ward — right next to a girl with uncontrolled epilepsy who was strapped into the bed, screaming. While you sympathize with the other parents, you still have to protect your own!
Again, this is only a potential problem, but it could happen. I personally would never sign this ED diagnosis unless at least two qualified psychiatrists whom I trusted had convinced me that my child needed specialized counselling and this was the only way to get it.
And same on erasing the PDD as above.

As far as the school doing the about-face, remember what I said about bullies responding to their own medicine? You actually went and got an outside diagnosis from a professional, and the school administration *knows* this will stand up in court. Perhaps you also took some of my advice about being more assertive. They’ll back up into the next state if you show you know the rules and can prove they’ve broken them.

******************

Legal fights aside, remember we were going to drain this swamp, before the alligators distracted us. The first and most important thing is for him to learn to read, and then learn math. Please do everything you can to find him a tutor who knows and uses a good phonics-based system. Once he is reading better, most of the rest of this will be irrelevant.

How you will explain it is very simple. You will tell him that you made decisions based on what you felt would help him most,that you loved him enough to do what you felt was best and with what information you had. That you love him. He will turn to you and say,I love you too.

Lulu

IDEA prevents teachers and administrators from revealing the identity of the other children. This is to protect their privacy.

Laurie

Maybe everything would have turned out the same anyway no matter what. I do think that I was in denial about the depth of his emotional issues. Back then we called it “Behavior Disordered.”

I have a problem with calling anyone “Emotionally Disturbed.” (Feels like name-called to me.) I think that label needs to be changed to emotionally disordered. (not a lot better, but a little.) It may be the same thing, but calling someone disturbed just doesn’t seem right.

I think my son is making progress now. Like I said, maybe he would have gone through all this anyway. I’m not sure the glorious psych professionals know what they are doing…diagnosis by trial & error. Flavor of the month comes to mind sometimes.

Yes, I do beat myself up a lot. Just tired of years & years of all this.

Susan,

You know we all do the best we can at the time. In retrospect, it may not be the best, but it all we could do. There are lots of things I could beat myself up over, if I wanted to. My LD child had undiagnosed ear infections which have played havoc on his development. He was a grumpy, irritable toddler and I just assumed it was his personality. Afterall, it wasn’t like there was much variation from day to day. I put him in front of the TV a lot—it was the only way to get any peace—and I am not even a TV watcher. This is the worst thing I could have done for a language delayed child. I even had a pediatrician sister in law bugging me to get him evaluated but I dismissed her concerns. I thought he was just a boy (compared to his sister) who was developing a little slower (and had a lousy personality) In retrospect, I really missed the boat and my serious misreading of what was going on contributed to his problems.

But I really don’t beat myself up over it. I, like you, would have never done anything that I thought wasn’t in my son’s best interest. He had regular medical care—and noone picked anything up until the second time his hearing was evaluated by an audiologist. The first time, when he was just 3, his hearing was normal. An audiologist I now work with told me that some kids have fluctuating problems and those are the worse from a developmental perspective.

You love your son dearly and would have done it differently, had you known the outcome. I would have too. But we made the best choices we could with the information we had, given our interpretation of the world at the time. Noone else could have done more.

Beth

Beth

I know you are right.

Right now though, I find it very hard to believe that he would see it this way. He is very resentful of us “forcing” help of any kind on him. I think finding out about ED down the road would be the straw that breaks the camel’s back.

I think that I have decided that before I agree to anything that identifies emotional issues in the IEP, we will see if the change in school environment has an impact or affect on his emotional condition. They offered the instructional self-contained language arts.

The trick is, will the school give us more of the same or will they heed warning from the letter that our private psych wrote to the school in my son’s defense. He stated that their intervention to date has been indadequate and contributing to his emotional state.

Thanks again for your support.