21 June 2011

So here's the thing...

I'm just gonna lay it all out there... but first grab a stiff drink, or some wine. This post turned out a bit lengthy :)

We declined the assessments by the school psychologist.


Okay, so maybe that's sort of anti-climactic and not a big deal. Maybe you did more of a "Huh?" or "So what?" instead of a full-blown gasp... but I assure you, some folks gasped.

I figured our decision might raise some eyebrows among the education community, and even among some parents who have children with special needs. Keep in mind, though, that the school district needs parental consent before anybody can legally assess/observe a child. That means you don't have to consent to specific (or any) of the assessments. So, if you decline, they can't/won't do that assessment (although, in CA that might change if a bill passes requiring the school district to take parents to due process if they refuse assessments/services, but that's a different post). Of course, you can't decline a speech assessment and turn around and say you want speech therapy. So I wouldn't recommend being all willy-nilly with your declinations. But I digress...

All this simply means is that Sheridan - or, more accurately, his pain-in-the-ass parents - no longer fit into the traditional, expected, routine IEP process.

And let me say this before I go on: despite some early-on frustrations (i.e., the school district - for a very long time - did not share what preschool programs existed; we wanted to visit a few example programs so that during the IEP Gary and I could make an educated, collaborative decision with the team... they did eventually identify a few programs for us to visit)... so, despite those early frustrations, our two meetings with district personnel have gone really well (the first was his transition meeting about 4 weeks ago, the second was Sheridan's academic/pre-academic skills assessment). All children have the right to have their parents as equal members (with school district personnel) on their IEP teams. And I believe that Sheridan's outcomes will be substantially more positive if we all work together collaboratively, so I went in to this process with that collaborative, cooperative spirit. And so far, so good on all accounts!

So, the biggest question y'all probably have is: Why did you decline the psych assessments?

It's not an easy answer... but I'm gonna give it a try. And I provide way more details than you probably care to read about, so feel free to skip around a bit, but after receiving so many comments and emails about how useful this level of detail is, I'm happy to provide it. I sure wish I had it in advance...

  1. Sheridan does not need a psycho-motor evaluation. The school district offered us OT and PT evaluations, so the psycho-motor evaluation would be duplicative. No need for that. We believe the OT and PT will provide better assessments anyway, given that they are licensed specifically in those areas of expertise. For those who are curious, here's the description of the psycho-motor eval: These observations and tests measure the ability to coordinate body movements in both small and large muscle activities. These tests may also measure visual perceptual skills. The assessment includes observations and testing performed by the following professional staff: [the School Psychologist box is checked]. 
  2. Sheridan does not need a Social/Emotional/Behavior Status evaluation. Not at this moment, anyway. We don't have any concerns in these areas, unless the school district has some kick-ass, magical service that gets rid of the terrible twos. But I doubt that, because the district would have way more money if they tapped that market. And besides, Sheridan's twos aren't nearly as bad as other kids'. [*****this is me knocking on my MDF, fake wood desk*****]
  3. So, that leaves Intellectual Development (ID) described as: INTELLECTUAL DEVELOPMENT (Including means to assess when standard tests are considered invalid): These observations and tests measure the ability to utilize information to problem solve in both familiar and new situations. These tests also reflect learning rate and assist in predicting how well the individual may do in school. Verbal and non-verbal tests may be used as appropriate. These tests may include basic psychological processes of auditory, attention, visual and sensory motor. The assessment includes observations and testing performed by the following professional staff: [the School Psychologist box is checked]. And here's some of the reasons we declined the ID assessment (remember my previous disclaimers that I'm not a lawyer and I don't even play one on TV? Those come in handy here)...
  • The ID assessments are not valid at Sheridan's age. Even the school district noted that the available assessments "aren't very accurate" for young children like Sheridan. Even if I wanted to do an assessment, I would never consent to an assessment that is not going to provide a valid "picture" of my son's abilities. For example, many assessments require a child to speak an answer (I'm not saying that the exact instrument the district wants to use requires this, this is simply an example), so if Sheridan cannot speak the answer (which often he cannot given his Apraxia of Speech), he might not get credit for knowing something. In other words, in that example, the assessment isn't just measuring Sheridan's knowledge or abilities, it's measuring his ability to communicate his knowledge/ability. So, the bottom line is, an assessment is only valid to the extent that it assesses/measures what it intends to measure, and nothing else. Everything I've read about ID assessments at a young age indicates they have validity issues. And the school district agrees with this point, so I will move on...
  • The ID assessment is not required to establish eligibility. As two quick examples, I sat in on two different IEPs this past spring (as a note-taker) - both children have Ds - and neither child qualified for special education support via their ID assessments. Their scores "weren't low enough" to qualify for the "mental retardation" criterion, so the IEP teams found other, general categories to qualify the children. Also, according to federal law you can establish eligibility for special education support through any number of categories, "mental retardation" is just one of them (and, yes, eventually that category will be re-titled "Intellectual Disability" soon). The State of California added additional categories, as well. So, the ID assessment is not the only way a child qualifies.
  • For Sheridan, there is no value added by doing the ID assessment. The result of the assessment is merely an educational determination (or diagnosis) of cognitive status. The assessment has no bearing on any functional outcome for Sheridan. It doesn't provide any additional service or therapy. Functionally, it does nothing. Provides him with zilch. So, the assessment exists (in Sheridan's case) merely to provide the educational determination. Which means every time somebody at his school, in the school district, a new therapist, anybody opens his file they will look at this determination and formulate an opinion of him. Which brings me to our biggest reason...
  • It's a matter of human dignity. It's our responsibility to advocate on Sheridan's behalf until he is able to take over the job himself. And a key function of our responsibility is to respect Sheridan as a person. A whole being. And our belief is that he as the right to the same dignity as any other person. Labeling him based on cognitive assessments (or providing an educational "diagnosis") simply for the sake of checking a box on a form is demeaning. You do realize what they are looking for, right? If a child performs below average (or later when standardized IQ tests are administered and the IQ is anywhere below 70) they are diagnosed with "mental retardation" (again, this will change to Intellectual Disability soon, but the actual words don't matter to me). The sole reason that diagnosis is needed, as far as I can tell in Sheridan's case, is simply to check a box and say, "ok, this kid is eligible for services." It's a label for the sake of a label. 
  • And by the way, he qualifies (at ages 3-5) under California's "Established Medical Diagnosis" criterion. That makes the assessment a moot point. An established medical disability  is "a disabling medical condition or congenital syndrome that the IEP team determines has a high predictability of requiring special education services." And remember that special education services includes things like speech therapy, OT, PT, etc., so it's not just limited to a "special day class" or something like that.
Ok, some counter arguments and questions...
  1. Do I think ID assessments are inherently bad? No! In fact, I think they can be - and are - useful for many students. 
  2. Lisa, you're delusional and afraid of the truth about Down syndrome. Anybody who knows me knows how incredibly ridiculous this assertion is. And anybody who knows Sheridan is aware that there is absolutely nothing to be afraid about in terms of who he is. I can't believe how many people - including advocacy organizations - told me that we are hiding from Down syndrome and we're deluding ourselves. Funny how they don't see our viewpoint as fully accepting Sheridan's diagnosis.  
  3. Sheridan is doing SO great... why not do the stupid assessment and prove all the stereotypes about Ds wrong? As tempting as that is, it assumes any assessment would be valid. But let's say, for argument sake, that there was a valid assessment... Sheridan's abilities (and challenges) speak loud and clear through all the other assessments (e.g., his academic skills) and his previous reports from his Early Intervention providers. THEY know Sheridan better than anybody else at this point (from a "services" standpoint)... most have worked with him for a very long (his PT has been with us since he was a newborn!). So, the new assessments and his final Early Intervention "graduation" reports will provide a clear picture of where Sheridan is. All these combined show how kick-ass Sheridan is doing. The ID assessment wouldn't add anything new.
  4. But, Lisa, don't you want the school psychologist to at least meet Sheridan so he can charm him/her? Don't you want the school psychologist to know Sheridan given that he/she will be on the IEP team?  I admit I hadn't thought of this question until my good friend Jen asked me. It's a really good question (thanks, Jen!). And as much as Sheridan likes knocking the socks off of people (especially the ladies, I might add), we aren't going to agree to an evaluation or observation simply so they can meet. Although I admit we have to do more leg work to better understand the role of the school psychologist on the IEP team - especially in light of declining any evaluation - we just don't see the need. 
  5. Do you have some kind of hell-bent animosity toward psychologists? Hahahaha. No. In fact, much of my doctorate training was in social cognition (social psychology). I happen to like many psychologists very much :)  It has nothing to do with the school psychologist, per se. It has everything to do with assessments themselves, the goals of the assessments, and our philosophy about raising Sheridan. 
  6. Sheridan already has a diagnosis/label of Down syndrome, so what's the big deal if he has another diagnosis/label on him? The fact that he has a medical diagnosis is different than an educational determination. We're talking about a "diagnosis" from an educational perspective, made by an educational team (the IEP team). And, as those of us in the Ds community know, simply having a Ds medical diagnosis means that many people will view, treat, and make assumptions about Sheridan based on misinformation and stereotypes. I see no need to add another layer of labeling to that mess.
Okay... now I'm interested to hear what you think about all this.


  1. Wow, Lisa, I really do appreciate the level of detail you gave. I wish Sheridan were just slightly older than JM so YOU could do all that hard thinking before I had to make a decision for JM ;-) I do see your point about adding another label, and you have every right to deny the evaluation/assessment if it doesn't make sense to do it. Of all the people on the IEP team, I felt most uncomfortable with the psych evaluation. I agree that it's probably invalid given our boys' ages. At some point, I think it could be useful... perhaps elementary school age and up. Did people really, truly ask you all those questions in aqua? Of all the people I know, I know you aren't running away from Ds... you do an amazing job working for those who have it and their families, but most importantly, for Sheridan. Hugs!

  2. Loved playing Devil's Advocate....ROCK ON Sista!

  3. Lisa...I've long said that kids with DS are "violets" living in a "daisy" world. And, if there were any assessments made exclusively for violets, I'd be all over them. Having a violet take a daisy test and then proceed to have a meeting where the results show the shocking evidence that your child is not a daisy seems just plain ridiculous and wasteful.

    So...I guess I am telling you that we haven't done many formal assessments at all and it hasn't hampered Patrick's education as far as I can tell. Focusing on the disparity in learning doesn't help too much. Finding out the student's strengths and using those strengths to help the weaknesses is our focus.

    Congrats on a thought out and mindful approach to Sheridan's education. :) Best of luck! ~Beth

  4. Thank you so much for this information. My daughter just turned 2, so we haven't crossed this bridge yet. However, I know I will be referring back to your blog when we do. When making decisions for the little ones, I think research and gut feelings are two of the most important tools we have. I applaud your actions!

  5. You know how we feel, Dr. Lindsey. But I just want to say that I am so proud of you for standing up for what you believe in (and what you believe is in the best interest of your child) despite negative reactions from "professionals" and, in some instances, friends. In my opinion, that is love (mixed with a tremendous amount of courage).

  6. Thank you so much for sharing this! I am very much of the same mindset as you and I hadn't had a chance to do much research on this topic, but knew I needed to in a few months. You just saved me a decent chunk of time! Thank you!!!!!

  7. Thanks for explaining. I was very curious when I saw your posts on facebook. I applaud you for thinking ahead and tackling such an established practice. :)

  8. Boy did I come back to blogland just in time....I am so glad that this post was staring me in the face when I did!! Landon is almost 29 months old....I am actually in the process of putting my thoughts together in a draft to post in the next couple of days. About a week ago, mu husband & I visited the preschool program that Landon will be attending in February (wanted the initial visit to be done to make sure that we felt this would be a good placement for him.....would've sucked if we waited until the IEP process and realized that we didn't like the program). I am definitely of the same mindset as you, Lisa.....which is why I am having such a hard time with this transition. You see, Landon attends a daycare/preschool that has never serviced children with special needs (let alone Ds). My other 2 sons (both typical) also attended the same daycare....both stayed there until they turned 5 and moved on to Kindergarten. How I wish I could do the same for Landon.....it has been WONDERFUL sending him to a school where there is no preconceived notion of what a child with Ds must be like or how they learn.

    Landon's EI therapists see him at school (all week). The teachers & students are always included in Landon's sessions (which helps the teachers to understand Landon and techniques on how to HELP him do the same things as the other children). This has been working GREAT. Landon gets assistance/help, when and only when, he needs it. There are NO assumptions that Landon can't do the things that his peers are doing.

    I couldn't agree more about declining that assessment.....I would probably do the same....ESPECIALLY at that age. Is it possible that the assessment could be beneficial in the future.....maybe.....but we will cross that bridge when we get to it.

    You are doing a FABULOUS job with Sheridan.....I love a good old (not literally, lol) fashion KICK-ASS mama!!!!! Kudos to you and thanks for the detailed information.....it will come in handy as we approach Landon's transition.

  9. I'm so fortunate that, unlike Monica, Sheridan actually IS just a little bit older than Maybelle! So I'm getting this info right when I need it!

    Thank you for a thought-provoking post. The human dignity part got me the most, and like you, I'm incredibly wary of labels being put on Maybelle by a culture I don't necessarily trust. We are all over Down syndrome--that's a label we enthusiastically embrace--but I also recognize we have a lot of work to do to challenge the stereotypes surrounding intellectual disabilities.

  10. Monica, unfortunately we DID receive all the comments/questions in aqua.

    Alison, I feel the same exact way... I embrace the label of Down syndrome with open arms and a happy heart, despite any extra work I have to do as Sheridan's mom to help people see beyond just the label.

    Kelly, you said you wished you could keep Landon in his current school environment until Kindergarten. Of course, I don't know MA education law, so you'll want to check this out, but in CA you absolutely CAN keep your child in a private school FOR PRESCHOOL and still keep services.

    Here's the thing: preschool (in CA, and many other states) is volitional. It's completely voluntary. Which means you could say you're not sending him anywhere, you're keeping him home, and you still get services designated at the IEP (e.g., OT, PT, speech). You can get the same if you have him in a private school setting (but ask around to other local parents to know how forthcoming you should be with your district - it's technically your/Landon's right, but some districts frown on giving services if the child isn't in their preschool settings - because they don't get special ed money for your child attending school ;-) Ok, so that's a long way of saying that until Landon reaches the compulsory age for school (most states legally require children to begin attending school at Kindergarten or 1st grade), you can have him in any setting and still get the support he needs. It's a whole different story once they start K or 1st, but for now, hope this helps you look into various options for Landon :)

  11. My daughter just went through this same thing down here in Ventura County...deja vu! First, I refused to check the form the said "MR" and instead checked a box "other" and wrote in DS along with a mention of the new federal law changing this language and it being offensive.

    Next the psychologist told us our daughter could not be determined to have a delay because she was able to put a triangle in a trianle slot and a circle in a circle slot....really?! That is the mark of what a typical 3 yr old should be able to do?!? Well cool they say she is not delayed. I hope they are right, but I am realistic.

  12. I like your reasoning. I like the fact that you really thought about this and realized it wasn't doing anything to help Sheridan. You questioned authority. You stood up to the man. You're so punk rock.

  13. Lisa, I appreciate this post so much. Thanks for all the info and explanations.

  14. Love this post! The closer Claire gets to going to preschool, the more I love reading about everyone's experiences.

    I have already decided that Claire will not have the ID/IQ testing. And my mother, as much as I love her, is the reason why. She's been a special ed teacher FOREVER, but she routinely refers to kids by their IQ, labels, etc. And I will not have that extra limitation placed on Claire. I know my mom, and other SpEd teachers, don't mean anything by it, but it does change their expectations of what a child can do. And I don't like it.