Well, okay, stop. Before I get to that "first of all", I should actually define what that means, for those of you who don't know. Here's how the Texas Education Agency's A Guide to the Admission, Review and Dismissal Process defines the ARD committee:
Admission, Review, and Dismissal (ARD) Committee: The admission, review, and dismissal (ARD) committee is composed of a student’s parent(s) and school personnel who are involved with the student. The ARD committee determines a student’s eligibility to receive special education services and develops the individualized education program (IEP) of the student.
So yes, this meeting went well. Now that we're in Plano, ARD committee meetings usually run pretty smoothly. We all tend to be on the same page, after all, and the members of Schuyler's team seem to take us seriously and behave as if they are genuinely happy that we're as involved as we are. Our input seems to drive these meetings, which is as it should be, and yet I know better than to believe that's how most parents feel when they are meeting with their kid's IEP committee.
The issue of the three-year evaluation was only discussed in passing since we put it off until early next year. No one seemed to mind; I actually felt an almost palpable sense of relief in the room. In talking to Schuyler's teacher after the meeting, we learned a little bit more about the process. It looks like we do in fact have the option of choosing not to have this evaluation administered, and since she already qualifies for special education services, there doesn't appear to be anything she'd stand to lose by skipping it.
We're all going to follow up to find out if there are doors to services that might actually be opened by this test, but unless they include a free pony, I can't imagine why would would go through with it. The benefits (aside from possible additional federal reimbursements for the school district) seem intangible at this point. The consequences, on the other hand, seem all too real.
This is hard. Even if she never takes the test, it's still out there. The word is still there, and there's at least one person on Schuyler's team who seems eager to attach it to her. Not out of any malevolent intent, but because in her eyes, it's important knowledge, and knowledge is power.
Except to me, it isn't, not when this knowledge is gained through questionable means. And make no mistake. Assigning an IQ score to a non-verbal child is a subjective process at best. One commenter on my last post put it best:
"To administer the test via AAC breaks the procedural integrity of the test. The norm table that the scores are based on are set using a sample of speaking children. […] The testing may bring some valuable insights to her reasoning, an error analysis might teach the team some things about deficits that may be addressed, but the number is not valid. Unfortunately, numerical scores are easier to read while you are skimming a report than the paragraph of disclaimers that dismiss that number as questionable."
I know that the lens of fatherhood is coloring my thoughts and judgments on this issue, and Julie's objectivity is equally suspect. But I asked myself a question, and in my answer to that question, I knew the right thing to do. My question was simply this. Which would I feel comfortable with as a mistake, one for which I might find myself apologizing to Schuyler one day? My decision to skip a test that might have possibly helped her out of my fear of stigmatization for her? Or a decision to allow someone to attach that awful word to her, despite being mindful of the risk, all on a stranger's assurance that doing so might ultimately benefitted her one day?
That was easy. We don't get many simple or straightforward questions where Schuyler's future is concerned, but that one was no challenge at all.
18 comments:
Were they just doing an IQ test or were they running a full psychometry exam. A full exam would tell you where the difficulties lie and give you some means of getting around them. This is what we are doing. Then my eldest had a full language assessment done which gave us an indepth look at the actual Language LD not just a "has short term memory problems". Our psychometry exam came back as "academically higher than testing shows"... Score one for the Mom... Proves the testing done wasn't necessarily the correct testing for him.
With the younger we are going to request other tests as well, including the ABLL's and Carolina Curriculum. There are many, many tests out there to tell you many, many thing... It's just a matter of knowing what you want to know and then find the testing process to give you that answer.
Testing for us will not have us lose the services. Getting rid of the word "autism" will. I am interested in how they learn, therefore educating them in that manner not whatever the school thinks is appropriate.
Could she be tested with Raven's Progressive Matrices?
I think you are 100% right (no surprises there and not that my opinion matters). Here's the thing...those tests are questionable on neurotypical students. If there are questions of validity and reliability for neurotypical kids, then the chances of error in Schuyler's case are sky high. See, if you test well/score well on these stupid tests, you are more than likely a smart cookie. However, if you score poorly? Maybe you had a bad day. Maybe you didn't understand the instructions. Maybe you stress out over tests. Maybe you don't do well with pressure. Maybe, maybe maybe. And if there are all those questions about how much stock to put in those tests for your "average" child, the risks and questions are only heightened by Schuyler's situation.
As other commenters have said, I have no real right to speak about Schuyler as I only know her through your lens, but what I know tells me that the word you are referring to should NEVER be used in relation to her. There is too much happening in that brain of hers.
Sending lots of good thoughts to Plano.
I pulled out of the public education system entirely after a heated argument in a pre-IEP meeting about what "handicapping condition" to label my child with. The team wanted to call her autistic despite a private evaluation (with a much higher educated PhD neuropsychologist who specializes in kids like my daughter) which had diagnosed her with something called non-verbal learning disorder (everything BESIDES speech and language, basically). The reasoning was again to "get services," but I could not handle the idea of my child being publicly, indelibly, ineradicably labeled with something that was inaccurate. We ended up getting private services suited exactly to our daughter's challenges.
You asked the right question, and you got the right answer from yourself.
(This is not a "down with public education" comment, but a recognition that the way the system works requires some very well-meaning people to bandy labels about in a way that carries some significant, unintended consequences.)
My son is 6 and was labeled as "Autistic" in his evaluation for K. If he was autistic, I would have no problem with it, but he is not.
I understand being wary of labels. I told them over and over that he isn't autistic and that ADHD should be his main label. They didn't listen.
His present teachers completely ignored the Autism label. He will be evaluated again at a later date to have the label removed.
There is no reason for a label unless they are trying to deny her services. They should treat her delays only.
We just received the dreaded "A" bomb today from the developmental pediatrican. Aside from the fact I feel like vomiting, I can't even begin to process this. So your post... and choices...resonate with me. I have zero words of wisdom, just best wishes.
Your parental instincts are so strong on this... you will never regret paying attention to that.
Annoying suggestion/question:
Have you had any receptive language testing done?
I only ask because A) I'm a random person on the internet so it's my job to make suggestions
and B) Last year my son's speech therapist tested him on receptive language comprehension. It was a fun, relaxed, game-like test where he pretty much could point to the answers or pantomime along with his answers to make himself clear. They even let me translate for him when she couldn't understand his response. They just kept going until he missed four in a row, then stopped. Not a traditional IQ test by any means (which wasn't what we were looking for) but it gave us a good idea of where his reasoning/comprehension were ahead of his ability to express himself. I actually felt awful afterwards. We'd been talking to him like he was that word-ed. :-\
(Which you don't do, but maybe others do? I have no idea. I should almost definitely shut up now.)
Hannah gets this word attached to her too.
This may sound Pollyanna-ic but, I try to divorce the playground interpretation of the word. Which is that person is stupid.
I'm an artist and we use retardants to slow the dry time of paint. The Latin root “tard” means slow and the root “re” means again. Truthfully, Hannah's rate of learning is not at the same pace as her peers in everything and yes we do need things again and again.
I feel it is a hindrance to get Hannah the resources she needs if people can't discuss truthfully the issues she is dealing with.
On a gut level the playground interpretation haunts me, but I remind myself these people are not trying to taunt me or my daughter. I don't think any word they use to describe this does not have a stigma attached to it.
I saw a recent show where the main character asked the person talking to her that when he said she was special did that he meant it in the ride the short bus way.
P.s. My husband chimed in to say he doesn't agree with me.
It's just a word. It won't change who she is. If it gets her some benefits so much the better. You know what her abilities are and the word won't change that..
I'm so glad that you can opt out of the testing. If the time comes where you need to do it for some reason, you can make the decision then. It does seem like Schuyler is being underestimated, particularly given her unexpected success with the TAKS testing last year.
IQ tests are so problematic--my 4 year old was tested for enrollment in a private school that has only gifted-talented students. (We ultimately decided not to place him there--the burn out potential seemed too great). But, the IQ testing with the specialist took 7 minutes. Seriously--7 minutes to give us a number that could mean a lot. We've hidden away the score and will probably throw it away, because we really don't want him to know "that number." That number, in its essence, is a ranking used to compare people without regard to their special gifts.
Laura
There should be psychometric tests which don't weight the verbal aspects as high, just as there are valid tests for individuals who are blind.
A major reason to retest a child in the school environment isn't to qualify (or requalify), though that's possible. A larger reason is to ensure that they're progressing and that the education is meeting the student's needs. I would disuade you from passing on the eval. Rather, find the one that can accurately (as best possible) assess her abilities.
All the best
Learn everything you can about a concept called Response to Intervention. Your last two posts have illustrated a bigger struggle that's happening out there in the world of special education, and actually, general education. I'm really excited to see a parent's perspective on NOT testing, since a lot of what I see in the schools is parents demanding that their children be tested without really understanding what it entails. We're rolling it out in our schools here right now and spending a lot of time educating parents and teachers about just how much can be done for their kids without testing them.
Are there cases in which testing is good? Definitely. However, and keep in mind that I don't know how the state of Texas and your schools work their system, there's a growing movement to realize that students don't need labels to get the services they need. A lot of this applies to children with learning disabilities, but it works for almost everyone. The bottom line is that many of us believe testing doesn't always provide educationally relevant information. Yeah, that's the IQ score, but does it really give me the information I need to help this child succeed? If not, why do it?
I'm an old special ed teacher in West Texas. I've found time and again that once a student has that MR label attached, everyone connected to that student doesn't expect much anymore. The bar is lowered by everyone, seems like. Since she can still qualify for sp. ed. services even though it's time for her re-eval and you don't have to have her tested again, I'd advise not to. Maybe there's something I don't know about what services that label would get her that she isn't getting now. I have had lots of students with all kinds of handicapping conditions. Don't know of any services the MR ones get that the others can't. I'd like to know specifically what other services she'd get if tested and subsequently labeled. If it's just to get more federal money for sp. ed. forget it.
I cannot even begin to understand what you are going through right now. I guess I just wanted to say that
1. I think that if I were in your shoes, there is no way I would want to test her. I can't imagine any of the services the school district could provide her would be worth the label.
2. My thoughts are with you and Julie right now. I hope it all works out...
Oh Boy! Bureaucrats and proffesionals
I think maybe e-mail or pull up a visual representation of what it is they need to do to explain it to schuyler. It reemainds me of a scene from a movie where the real villian is the system, I think robin williams is in it. So I am in A.T. in NY and Have had the same experiance of those testing me and labeling, until I went to a small private school that was not interested in my scores but more so in my interests and my motivation. So as fate would have it, our son too is dangerously close to the edge as well with that word, and despite teachers and therapists knowing us (my wife as well is a P.T.( they donot know our feelings regarding testing. She has to believe some of the motor stuff but when it comes to cognition? that is a dicey theory that I contend is not at all accuratwe and will not really provide with more services. From my knowing you guys through this blog and your book and your stories I would contend that she has a large understanding of the abgstract and the world around her, as much as any7one else her age, I mean my eight year old son....well lets just say that his knowledge and perceptions of the world depend on what mood he is in. He can sit through a nova episode and understand what is going on but has a hard time remembering that the bus will be here in 15min and he needs to get moving so cognition memory perception is all relative, I contend that that word needs to go completely and at all times I try not to use it at all. if there is one problem with our system as a hole is the testing. I had to take sat for example, I scored so low that they thought I had mild retardation, and proceded to test me...which I have blocked from memory other then vivid images of puzzles and timers. So I picked a college with out sat requirements that I was interested in and got my gpa up and transferred to a better school springfield college in which I graduated with a respectable b avg I think, it was a while ago. So anyway test smest, ask at the meeting about how they have learned to acess schuy's interest and how they have been able to adapt to her way of learning.
Even if you don't do the test now it will still be around in 5 years or next year if you feel it is appropriate.
That "word" will still be around too (unfortunately) and whatever benefits may be out there will still be.
We took our daughter to a developmental pediatrician when she was 8 months old. The woman told us that she was the word because she wouldn't look at her and she thrusted her tongue. It's in her record somewhere because of that woman and that angers me. Our daughter is visually fine now and doesn't thrust her tongue.
Good decision. Follow your gut.
You are right, I wouldnt want Schuyler evaluated by a school or "general" psychologist. They just don't have the specialized training and materials to do the right job. However, a valid and helpful evaluation CAN be done if it's done by a specialist in special needs and neurological differences- and one who has the necessary tools. There are a number of nonverbal test measures that test different aspects of neuropyschological functioning including intelligence (the UNIT, C-TONI, Raven's, Leiter, PPVT, etc). Some are normed on both typical and "clinical" populations- although we usually want to know how she compares to her typical peers. And other efforts can be taken to make sure the testing is valid. In my own practice, I like to have the parents in the room to help determine any ambiguous communicative gestures or whether the kid is "messing with me" (kids are kids). I also take my time- a quicky evaluation is foolish.
So, why bother with testing? You can get some good answers. It is not uncommon that I have a client who is referred to me as "nonverbal autistic/ MR" and then lo and behold an appropriate evaluation reveals a normal nonverbal IQ- or at the very least strengths that had not been identified before. Good to know right? I've seen kids that had been stuck in "Profound MR" classrooms that are now in mainstream classes with an aide. Or so called "Low Functioning-Nonverbal-MR" folks that have now been taught to type and can communicate meaningfully. And what about learning style and an individual profile of strengths and weaknesses? Such information can help to inform how to teach the kid most effectively. I find evaluations especially helpful in cases like Schuyler because she has an unusual brain, frankly, and we dont fully know how it affects her neurological functioning. It would also be good to know her "baseline" in case she undergoes any future neurological changes, for good or bad.
The MR label? Even if her nonverbal IQ is consistently below 70, it takes more than that score to get that diagnosis. She would need significant delays (again below 70, the 2nd percentile) in at least two areas of adaptive functioning. Adaptive functioning refers to her ability to function in "real life"- to communicate meaningfully, perform chores and self-care, have friends and play, etc. Just something to keep in mind.
I think you are making the right decision. An IQ test is absolutely unnecessary for either label or service purposes, and in Schuyler's case it would be difficult, if impossible to get a valid IQ score anyhow. (Though, as an aside, there are many decent tools that can be used to assess IQ nonverbally.)
As a school psychologist, I would not even consider requesting an evaluation for CI at this point anyhow, and I am surprised it has come up. There is more to this label than purely IQ. A second major criteria in most school systems is academic achievement in reading and math in the lowest 6th percentile.
Don't I remember that Schuyler passed the state assessment in reading last school year??? I would think at this point the "bad word" can be ruled out based on that information alone.
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