September 16, 2009

A Bad Word

There's a word that people in the disability community get very worked up about, and perhaps rightly so. It's a word packed with powder, ready to be ignited by a callous popular culture. And yet, I never joined in any of the "Spread the Word to End the Word" campaigns, nor did I join in the indignant angry protests at the use of this word in the movie Tropic Thunder. (The latter is primarily due to the fact I felt that in the particular case of Tropic Thunder, the word was being used in a way that aimed cutting humor not at those with disabilities, but at the shallow Hollywood entities who have used those with disabilities as vehicles to Oscar success.) I understand the outrage at the word, both in that case and in general, but in the same way that I've rejected the "universal" acceptance of People First Language, it's not a cause that resonates with me.

This is not to say that I'm never put off by that word. I find it offensive when it wanders too close to my weird and wonderful monster slayer. It is then that I rise up against it. Not when it is used casually or ignorantly, but rather when it arrives with full authority into my world. Insensitive teenagers and edgy comedians don't have power. Professionals do, at least as much as we allow them to have, which is plenty.

We had a meeting yesterday with Schuyler's teacher and the school's diagnostician in preparation for Schuyler's annual ARD meeting later this morning, where her IEP for the coming year will be finalized. With our permission, this diagnostician evaluated Schuyler three years ago, despite my reservations, because the school felt it was important to get a clear idea of where Schuyler stood cognitively.

This evaluation three years ago would determine her IQ (a frankly subjective process of which I am skeptical when it comes to assigning a score to a non-verbal six-year-old), and that IQ rating would put her into a cognitive range. My fear was that this numerical determination would place her within the range described by this word, this very loaded word that I felt had no place hanging around the neck of my determined and bright little girl.

Three years ago, we swallowed our hesitation, trusting in this new school and these new teachers for whom we had moved so willingly. The test was administered, a number was assigned that was high enough to dodge the word, and we went on with our lives.

Last week, we were informed that the diagnostician wants to re-evaluate Schuyler, and we set up yesterday's meeting to discuss that evaluation. And it was at this meeting that Julie and I were gently informed by the diagnostician that based on Schuyler's problems with abstract thinking and her significant delays in her academic and verbal skills, she feels confident that the new test score is almost certain to be significantly lower.

Low enough to assign that word to my little girl.

The diagnostician wants this word to become part of Schuyler's lexicon, not because she has a bad soul, but because she wants Schuyler to become eligible for additional services that this new assignment would bring. She wanted to do the test soon, but suggested that if we wanted, we could wait until after the holidays. "I just need to administer it by May," she told us.

I'm unconvinced. I'm unconvinced that there are services that Schuyler isn't receiving that this bad word would suddenly bring her. I'm unconvinced that these additional services would be enough to balance the feeling of wrongness at having this word, this fighting word of all fighting words, attached forever to Schuyler. It's not a word that can ever be taken away. It's a bell that can never be unrung.

But the bulk of my anxiety tonight comes from the fact that the diagnostician might be right. She's likely to be right, and in fighting this word, I may simply be living in denial, to no one's advantage.

Today's ARD meeting will be a hard one, and we will be listening very carefully to hear what the advantages to having this evaluation really are. More importantly, I want to know what happens if we ultimately decline (or refuse, I guess) to have the evaluation performed at all.

Don't be surprised if I elect not to share the final results of this evaluation, should it actually take place, and please don't feel insulted if we choose to keep it to ourselves. In this blog and even more so in my book, I haven't granted Schuyler a great deal of privacy, for which I don't feel guilt but do often feel trepidation.

But this is different. This is a word, a very bad word, that I will fight, rightly or wrongly, from ever being associated publicly with my sweet and ferocious and clever little girl.

34 comments:

C said...

Blessings to you and Julie as you prepare for whatever comes next. To Schuyler too, of course -- though I sometimes wonder if it isn't harder to be the parent. Someone who Knows Things. Whereas my child is simply living the life that is truly, roundly, fully his, we have agonies over things rational and irrational, and then over truly terrifying things like MRIs and, well, words.

I'm heading in to sit with the school people this week. Could be good, could be bad. Hate this part. Will be thinking about you and yours as you move into the school year.

farmwifetwo said...

Hi.

New to your world but not new to the online one.

I will share with you a story btwn myself and the OT coordinator. I have a son, that I could pull his ASD (autism) dx. He is very highfunctioning NLD (non-verbal learning disorder). We homeschool on top of regular school, he got straight B's last year (Gr 4) except in english (autism, not surprised) and an A in French (Canada).

But I won't. The psychometrist tested him at the beginning of Gr 4 said he could be re-dx'd and I said "NO" and requested a proper language evaluation by the SLP which highlighted the Language LD for us.

Why have I said "No" b/c as the OT Coordinator says "A label is ONLY to get services". Without the label I lose the 1/4 time EA/TA support and OT services. Without OT I lose the ability to get a keyboard/computer for him later this year.

It's also why I have no use for these adult autistics who are "fine" that claim autism is wonderful. Autism is not a "cutsie" club but a disability and developmental delay. Autism as a dx is to get SERVICES only. Soapbox :)

Listen carefully to what they have to say. Think of things you need for her. Find out what the disability services are, OT, SLP etc and how you keep those services. It may solely depend on a piece of paper... and trust me... having been there, done that...the wrong piece.. the missing piece... and you're SCREWED!!!

Thank you again for the ACD idea. Little boy (Gr 3) with full Autistic disorder, is getting a small one to try later this week from PDD services (they go school to school, he's in a regular class). It's worth a try. He does have words, but they are difficult to use.

edbteach said...

Once again thank you so much for opening my eyes to the other side of the story.

I was a teacher for 10 years and now I am a reading specialist and I've sat in dozens of ARDs recommending testing/services, etc to parents who were also unsure. I always thought that I was doing the right thing by asking parents to have their child evaluated.

Because of your writing and your choice to share your family with us I am a different person when I go into those meetings. I think about the other side now. (It's not that I didn't care before - I just didn't know.) Next time I recommend an evaluation I am going to be able to better connect with the parent because of what you have shared with us.

Thanks again.

SLP said...

You have every right to keep that word away. It is just a word, and she is always going to be awesome, no matter what. But it does carry some baggage and I've seen situations where the word makes the decisions for the future. If it makes a teacher push a child one iota further, expect something she wouldn't have expected, then tell them by no means does she need a cognitive measure. IQ is a farce and we know it and it is certainly less accurate in an AAC user. I would not allow any cognitive test that was not totally nonverbal measure, either. Good luck with your decision. It doesn't change how great she is and how far you've come.

queenbee said...

I sent you an email. Let me know if you want some ARD help.

grandefille said...

Schuyler's potential is as unlimited as the number of words to describe her.

You and Julie will do what's right by your girl, because you always have.

We are thinking of you, as we always do.

xo

grandefille & gang in Tennessee

amusings_bnl said...

Rob, we went through the same thing with Geoff when he was 6, again when he turned 9, and they'll be testing him again in November. His IQ score when he was 6 was 70, and all the reports we received back included that bad word.

The diagnostician said to me, "Oh don't worry about this. We know this isn't valid because Geoff is capable of taking the tests more seriously when he has a little more maturity." (Basically, he took two tests, declared it bullshit and walked out of the room saying 'this is stupid and boring. I'm outta here.")

So why did she complete the paperwork, the assessment, the everything and put together this package of information for us and then sit us down and verbally tell us that she thought in 3 years he'd do better? To make us "eligible for programs and assistance" based on that word.

I told her to shove it up her ass basically, that i would rather people who actually NEED the programs and assistance with children who REALLY fit into that "box" get the services. I felt like she was committing fraud.

Three years later Geoff took the tests again and this time every test he was given, he took seriously and finished and turned to the neuropsych doc and said "what else ya got? keep 'em comin...." so she threw every test she had at him, for four hours.

Now he's 12 and jaded and bored. I think that whatever the number was (and I honestly can't recall what it was) when he was 9 will be higher than what he gets in November because hey... he'll call bullshit and walk out of the room again, I'm sure.

Part of me says that yes -- you should embrace whatever comes out of the testing and if it DOES turn out lower and gives you "services" that you're not getting now, that could be a good thing.

But another part of me says... Don't sell your kid short. She could surprise you like Geoff shocked me 3 years ago.

Tell her to give it all she has and have fun with it. Have as much fun as she can. And don't share or remember the number if you don't want to. you're under no obligation to do so...

Schuyler is Schuyler... and truth be told, magical beings can be assigned no label or number that is "real."

Carol Askew said...

Each situation is different I’m sure, and you’re a smart guy and I trust you and Julie will do what’s best for Schuyler. But I will share our experience. We were told when my daughter was 5 that we had no choice – that the school district must do an IQ evaluation. Well, a school district psych that Megan had never met and had no rapport with showed up in the classroom one day, and spent a good long time with Megan “evaluating” her. Megan, who at the time, had an attention span of a gnat, and was (and still is) completely nonverbal. Not surprisingly, the score was well within the MR range. They of course told us the score was to “get services”, didn’t mean much, etc.

Then the next year, “given her low score”, they recommended a classroom specifically for kids with intellectual disabilities. They promised that she would continue to be challenged as much as Megan was ready for. So, even though she was learning to read in K and making great progress, in 1st grade she was put in a classroom where the other kids were significantly behind her. And it became apparent quickly that it just isn’t practical for a teacher to try to teach one child to read when the rest of the class was working on potty training and identifying colors. At least this particular teacher wasn’t able to.

We spent the next year fighting with the school district to get her into a better placement. By this time it was a completely different team. The psych that had evaluated Megan was replaced by someone else, who told me I was well-meaning, but obviously deluding myself that Megan could learn, because she could see by her IQ score on this paper that it was not possible – that the most we could hope for was for Megan to learn life skills. I was obviously appalled.

We ended up getting a comprehensive, private evaluation for Megan, with a psychologist that spent time getting to know Megan, broke up the testing into shorter sessions, and low and behold, we got a score above the MR range. The district accepted that evaluation, and she is now in a perfect classroom for her, and learning. Is her IQ 120, or even 100? No. I hate the numbers anyway and I don’t think they mean much. The real value in the evaluation was that it included recommendations on how Megan would learn best, and her strengths and weaknesses.

Schuyler may have some areas of learning that are harder for her, and some that will come easier. I think we all do to some extent. I worry about a number being on paper and in the heads of everyone in the district that may ever come into contact with her. I would hate for anyone to put limits on her.

Good luck.

Krista said...

Rob-

Food for thought....you already have a "gut" feeling about testing and its severe limitations when it comes to accurately assessing people who are nonverbal. My experience is that we are usually right on and we need to trusts our instincts.

With that said, it is true that the (low) numbers can get you services, however, those numbers can also cause people to limit Schuyler and lower their expectations (whether they intend to or not) for her in school.

One thing to consider, you and Julie could always seek an independent neurophsychological evaluation with a psychologist who has A LOT of experience evaluating nonverbal children. Now, your insurance may cover only a portion of this testing, so that is something to consider. However, the school psychologist is not the person to do this. No matter how wonderful he/she is- they are limited by the amount of time they can spend testing,(a private neruopsych can be done at Schuyler's pace- ie: 1 hour/day for 16 days if need be) the types of tests they can give(they can only give the tests that the school system has available), and in reality a school psych. does not have the day in and day out experience assessing nonverbal children in the way that a neuropsych who specializes in this type of testing will have.

Also, the results of the private testing would be for you and Julie to have and then you could decide if and when you want to share the results with the school....

Another route you could go- if you decide to have the school test Schuyler....if you feel the results are not valid or if you have concerns for any reason, you can request an IEE (Independent Educational Evaluation) with a neuropsych at the school's expense and the school would have to pay under IDEA.

These are the same issues we have had to consider with Ryan. I know these decisions are never easy to make. We know that the school has good intentions, however, good intentions can sometimes have negative consequences for our nonverbal children.

Best,
Krista

Laura said...

Wishing you strength on this difficult day!

I know I've never written before, but I've been following your story since our 15 month old was diagnosed with PMG 9 months ago. (This accompanied many other diagnoses caused by a rare chromosomal disorder.) It was so hard to take, but reading about Schuyler gave us hope. She reminds us (and daughter's therapists) of Anne. They're both sweet, clever, and spunky. No quantification, labels, or diagnoses will change the essence of who they are. No tests can accurately measure what their abilities are or will be.

Growing up, I had a councilor who thought she was helping me by putting me in the remedial classes after returning to school from a long illness. The label attached to me only crushed my self-esteem, and being where I wasn't challenged held me back academically. Luckily, I told my parents who helped me return to the proper academic tract. I went from Bs to straight As immediately and went on to MIT and a Masters degree.

I'm not saying that our daughters can achieve the same academic success, but labeling and quantifying IQ is very dangerous. Be cautious. Sometimes good intentions have negative results.

On the other hand, it is important to find out where her skills are lacking and where you need to focus your energies. I know it's hard, but look at your daughter objectively. You know her best. You know what she can and cannot do better than any evaluator can.

Is there a way you can have her take the test but not calculate her final score? In other words, can you find out where she might need extra help without tattooing her with a label? I hope you can.

Best of luck on this difficult day!

Jocelyn said...

Even though I have a child with special needs and live this stuff everyday, you never cease to open my eyes even more. To say things that are instantly right in my mind or heart, but I had no concept of until you said them.

You've given a voice to so many ppl, thank you.

MFA Mama said...

Oh, Rob. It hurts, doesn't it? That word was used on my middle child after his initial Early Intervention workup, and it garnered him services he otherwise wouldn't have had access to, and they were very, very helpful. Two years later he is on the borderline of "gifted" and that word is off the radar (everyone on my son's team now acknowledges that it's nearly impossible to get an accurate read on a primarily non-verbal kid, which he is not anymore but was at the time of that first assessment, at the age of two and a half, using conventional testing methods and that the adaptive ones don't have the numbers and data to validate them worth a crap) I'm not trying to make any predictions on Schuyler's behalf because heck, I don't have a crystal ball, but in our case allowing that word into our lives opened doors that we needed to get our feet into. Just a thought.

Sandy said...

We all are given things to handle in life some of us have children with different needs than others, others have different challenges. However, I can promise you that you have the strength within you to face whatever comes your way and the ability to make the right decision for your daughter. Now that my son is off in college I see so many things that I wish we would have done different however, I can't roll back the clock and change any of them. All I can do is look deep inside and ask myself one question, "Did I do the best I could with what I knew and had?" I know you are not big on God Robert,(and I'm fine with that) but I will keep you in my thoughts and prayers as well as your wife and daughter. The right decision is within you, sometimes we just have to put ourselves aside to find it.

Annie B. said...

I just sat and stared at the computer screen for 10 minutes after reading this. Partly thinking about our own journey hovering just points above this same word. . .(I knew what the dread word was the second I started reading). . .and partly just thinking about you all.

We are about 10 years down the road from you. . .on a road that is turning out to be strikingly similar. . .not in all circumstances, but in nature. Even though we vary greatly in other thoughts and beliefs. . .I feel a kindred spirit with you and Julie. We exist in a torturous place that most of the world doesn't understand. We are the champions of these, our broken. . .we defend them, we guide them, we love them, we spend our days looking out for them, and we will spend a lifetime thinking FOR them. We have to be strong for them. . .and yet tucked away in that same brain and in that same heart we war with our own heartache, our own fears, our own frustrations and dashed dreams. . .and we try to make sense of it everyday.

Can't change it, can't make it go away, can't really prepare you for the other moments like this that are waiting down the road. . .and I'd slap myself if I ever heard the words "Oh, she'll be fine!" EVER cross my lips. . .but the truth is. . .you will deal with this, whatever the results are. . .and you will work that much harder to give Schuyler the support and tools she needs to live a productive and successful life. And bigger than any of it is. . .you love her,you believe in her and you are there for her. . .and that will be as important as anything in the days ahead.

But for right now. . .hugs to you all.

ARB SLP said...

The SLP commenter is right. 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. As a scientist and an SLP, this drives me nuts that we still do this.
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.

Cheryl said...

Just my opinion, IQ scores are crap. Just yesterday in my child psyc class we were talking about how you can't get a false high IQ but how easy it is to get a false low IQ--because the questions are just not relevant. Prof is a school psychologist and used to work in an inner city high school (high african american population). Said one of the questions is "Who is Martin Luther King?" Asked us, people said civil rights leader, I had an inkling it was a trick question. That of course WAS the answer, but what's the answer all his students gave? MLK Jr's father. He gave it to them, but not everybody will. THAT's supposed to make you LESS smart? In my opinion catching a dumb mistake makes you MORE smart.

The thing that would bother me for Schuyler would be the reason I have a false lowish IQ (still within "normal" limits but lower then it should be)-- a lot of the test is timed and your score goes down if you take more time and don't get to as many questions. My crappy CP motor skills should have no bearing on my "intelligence." and yet as far as society sees it right now, they go hand in hand. Where does that make sense?

Christopher said...

For some reason they set up schools as a label factory. Like it is easier to teach and hand out money as long as we put the proper sticker on you.

I am sorry that it has now brought anxiety to your family.

I wish you well and hope with all of my heart that it works out in a way that leaves every one whole and loved.

Nightfall said...

{*{*{*{*{*{Rob}*}*}*}*}*}

My mom and I felt the same way when we decided not to seek diagnostic confirmation of autism in my daughter. We felt the stigma would outweigh the benefits in her case.

Karen said...

You are probably going to hate me for saying this, but it's just a word. I know that words have power, but they have the powere that we give them. I keep thinking of your own term for her, 'broken'. Many people are offended at the term, but you defend it because it's clear to you that things which should work in her body don't work. Schuyler is an amazing girl. But clearly things that should have grown and developed within her didn't. That's technically what the word your post is about means. It means that something interfered with her growth. The problem is not what it means. The problem is what it implies. But like it or not, some people will always look at her in a bad light no matter how she is labeled. Nothing you can do will change that. All you can do is what you've been doing all along... minimize the damage the assholes of the world can do by defending her as strongly as you can.

I don't think Schuyler meets the criteria of that word. In fact, I think she's quite intelligent. If she wasn't, she would not have been able to do all the things she has despite her disability. But I don't know if the test will reflect her intelligence. It isn't designed for people who can't communicate freely.

ANewKindOfPerfect said...

It is a word that I was disheartened to see on a school form with my daughter. With my daughter, there is no doubt. She truly is MR, with severe global developmental delays. That didn't make it any easier to see the words written on papers next to my beautiful princess's name. I had no idea people even USED that word anymore, to be honest. Now I know. I ignore it, it doesn't mean anything about WHO my daughter is.

In your case, I would ask them what services she is not getting, that the word MIGHT get her. If it's not anything you are missing now, then I would definately argue it.

H said...

To me, this has always been an issue with no right or wrong answer and it is confusing as hell to work through it. I wish you and Julie (and Schuyler) the best of luck. You can only do what you can do, what you feel is right and I hope you feel at peace with whatever happens.

buzzalot said...

Best wishes to you and lots of prayers for your beautiful girl!

I hate the "R" word too. I hate it when I hear it at work. I hate it when I have to say something because I am compelled to and I really dislike the looks I get from co-workers.

Elizabeth said...

I'm with you. And while that word has been assigned to my own daughter and is even on her IEP, I despise it. It's just not true and I regret profoundly not having it excised. Services be damned. They're not worth it.

Girls Rock Denver said...

Long time lurker. Hello.

I have never had to deal with this particular problem because when it comes to my sister, there was never any doubt. I grew up desensitized to it but for entirely different reasons. One thing was true for my sister, though, which seems like it may also be true for Schuyler: the various labels my sister's been given in her lifetime have not made life easier or harder for my sister. They have simply made life supposedly easier for her caregivers (with the exception of my parents). My sister's condition is very common. For a child like Schuyler, who exists in a nebulous world between possibility and stormclouds, with such a rare condition, it doesn't seem like more labels are helpful to her. Teachers et al want to know who and what your child is so they can effectively educate her; but Schuyler will let you all know who and what she is in her own good time, and if her teachers' lives are made harder in the interim, well, that's too bad for them.

I did not know, though, that it was still used on IEPs. I was under the impression that the PC crowd would have gotten around to changing the wording on official documents a long time ago. (Were I a member of the PC crowd, that would be first on my to-do list.)

Anyway, I don't have much to offer that hasn't already been said, but your entry made me think of an episode of This American Life from last year. One chapter is about a woman who raised her son who was diagnosed with mosaic Down syndrome in an unorthodox way. She had a similar antipathy towards labels:
http://www.thislife.org/Radio_Episode.aspx?sched=1265

(The episode is called "A Better Mousetrap 2008" in case the link doesn't work. And no, I don't work for Ira Glass or any of his affiliates.)

Karen said...

Isn't it funny that, with all the medical wrongs going on, it's that one word that seems to frighten the most? I'm still coming to terms with it, and it still hurts. It's part of our diagnosis. I don't have to like it. I don't have to embrace it. But I will not hesitate to draw my sword when someone uses that word in regards to my child. Even if it is true.

And still, so much to live through because of it.

Anonymous said...

Hello there,
I have twins that I have been fighting against this word for the last several years. Last year they finally agreed to put in one of their IEP's that her eligibility was based on her autism, but only if they also added the other word in there. I fought against it. They put that her test results showed that she was but that I as the parent refused to let them put that label on my child. I was livid and still am. I'm still fighting it. I don't believe that we will get any more services because of this label and am not a parent in denial. My daughters teacher can't find programs on the computer so she has my daughter find them for her. She is a very smart child, has an excellent memory but cannot speak. Anyway, good luck to you all.
Barbara

tsel said...

As a professional-in-training, and as an adult with disabilities, I often have a vastly differing opinion from the rest of the profession.

If you feel that Schuyler's needs are being met right now, then don't do the test. It seems to me that if the professionals in your district can't find some other measure or plan to analyze the way she thinks or processes, then something is wrong.

Ecological assessment seems like a more useful tool in this case.

If you determine that someday, it will be useful for her to have the word, then there's no reason she can't have the testing then. But in the meanwhile, since our "open" society attaches stigma to all sorts of things that we can't keep concealed, there's nothing wrong with shielding her from it.

Hello? said...

I feel you on this one. I really, really do. Made a similar choice for my son regarding a different kind of testing / service opportunity and haven't regretted doing so....yet. I can always choose that road in the future if the cost/benefit analysis yeilds different results at a later date.

This is unrelated but didn't know if you saw this. How about the idea that for some people consumer choice and lowering health care costs are one in the same. Why is it no surprise that this idea meets with bureaucratic resistance? Is it really that important to make sure people can't access the internet or play computer games????

http://www.nytimes.com/2009/09/15/technology/15speech.html?_r=4

Gina said...

Rob, you are right to question the test. We advised our school they could do a test if it was designed for a non verbal, vision impaired, completely immobile, left handed child otherwise it wasn't appropriate... their response was "oh no, clearly he will be "TLTA" in Aust this means "too low too assess", I smilingly suggested if they were going to put TLTA anywhere is should be written out in full as them being "too lazy to accommodate"... needless to say no TLTA has appeared nor any IQ request designed for our Son.
There is a good 3 part overview of IQ testing by Bruce Udisky, Canada you can find the first part here... http://www.aacl.org/Portals/0/Connections%202(1)%20low-res.pdf
and the following two parts from that same site.
The problem with the IQ test is it becomes a FACT not a tool for identifying additional support needs.

Anonymous said...

I've commented a few times in the past... I'm a teacher for kids with "that word". Well, actually, my official title is "cross-categorical". The state I teach in still classifies and places students by label. The state I came from, and the state I'm originally certified in (different states) use the label, because it is in the federal law. But they do not place students based solely on that label. My class in Pennsylvania was called "Life Skills", and was ANY child deemed in need of that kind of teaching.
And, I'll tell you that my students ALWAYS do academics. I've spent a lot of time fighting low expectations, and proving that my students can handle these in-depth tech-based projects.
There are some benefits to the label; my students who do not have it but have needed the functional academic curriculum are at a significant disadvantage when they graduate. They don't qualify for many services and state services are being cut back because of budgets. Most do not qualify for a job coach or support in that fashion, which they need. Students with the label get those services, residential assistance (including that really cool College Living Experience program...), and more funding. So do students with autism (in some states).
If you think these are services that Schuyler may need later, you may want to consider the label. But, don't allow it to change expectations. We have 2 students in my high school that came to us from another district with "that word" as their label. Both are in mainstream, team-taught academic classes, on target for a regular diploma. Why? Because the team at my school recognized that these kids could handle the environment. However, we left the label because we didn't want to wind up exiting them from special education completely... And if they need the assistance for college, it is in place with a dedicated funding stream that wouldn't be available with an LD or other label.

Rob Rummel-Hudson said...

One thing I feel like I should point out, as a reminder to myself as much as anyone else, is that Schuyler can't speak, and even though her verbal speech is getting marginally better, the chances that she will ever achieve complete, intelligible speech is pretty remote. So she's in no danger of losing her eligibility for special education, no matter how well she does on any given evaluation. I need to remember that.

Tania said...

As a wee lass, probably around Schuyler's age, I went through similar, regarding the schools and their assumptions.

I was a very quiet kid. Virtually non verbal. No one knew why. No one asked. I was sent to speech pathologists and remedial classes galore, and tagged with that dreaded word.

I was just a really quiet small kid who'd had bigger kids pound the crap out of me when I spoke. So I kept silent.

Anyway. Once we moved on past early elementary, it seemed to be less of a label, and just as labels can be attached, they can too be removed.

( I detest the word here, someone last year said "we call them BadWord" and she works with said same people. Shocked and appalled, I haven't seen my respect for her since. It packed up and left. In canada, we have some much kinder ways of phrasing it, mercifully.)

But yeah, if it doesn't really affect her services, I don't see a rush to tag Miss S so fast with a label from a test that isn't entirely a reliable test at all.

Anonymous said...

Short reply, my school uses the Hawaii Early Learner Profile (HELP) checklist which is divided into 2 categories, birth-3 and 3-6, it's an informal checklist that really only needs someone to check of yes, no, or you're seeing the start of the skill in question, and then assigns an age range that that skill is acquired by in neur-typically developing children.

Anonymous said...

I am right there right now too and love how you articulated it here.
My daughter is 4 , probably has Doose Syndrome and has Severe Verbal Apraxia.
When they try to administer these ridiculous boxed tests from the 1950's I want to scream.
I feel less neurotic when I come here and read your prose and wit. Thank you.