Monday, February 11, 2013

A Little New Perspective and Some (Possibly) Useful Information

Samantha, at about 9 months old, at a time when the school process was just a blip in the way, way, way off future...

So, after last week's post about how low Samantha's cognitive development (IQ) scores were, I had a very good friend, who has a career in the field of mental health, point something out to me that I had completely overlooked in my typically emotional response:

Her score is against *typically developing children.* 

Of course she's going to score low!  She is not, in any scientific sense of the word, a typical 6-year-old.  Granted, she certainly doesn't test all that well most of the time (even though it was reported that she was being cooperative), and was likely doing some of her own testing of the school psychologist at the time, but that test result was actually not very bad at all.  I should have seen that initially, but, as usual, I let my knee-jerk emotions get in the way of the truth and cloud my objectivity.  Not like I wasn't fine with it anyway, but I did feel that jolt that we all get when our children are evaluated.

One thing that really surprised me, however, was how biased I was when initially viewing the score without having yet received that new perspective.  Suddenly I began to wonder if Sammi wouldn't be able to do all of the things I had hoped and dreamed for her to do.  And really, I had to force myself to remember it's all nonsense.  This test is not a measure of her abilities, either present or future. 

I heard from many parents of younger children who said that they had a tough time facing their child's first evaluation, for entry into the public preschool system.  And yes, that's a really tough one to swallow, too.  To see your child's abilities in the context of age comparison (who really wants to hear that their 3-year-old is developing at an 18 month level?  Ugh.)  I have no advice, except to just take a deep breath, be happy that your kid is getting services (provided they are), and wait to see how they do once they get into the classroom environment.   I'm willing to bet that in at least 95% of the cases, the children thrive under an attentive and caring teacher.

I had a few people ask me to write about the process, how to navigate it when they get to this point of requests for IQ tests and label changes.  I said I would, but I honestly know that there are so many ways of looking at this, so many other experiences, so many people who would beg to differ with me about my way of going about things.  So all I can do is tell you our side in this.  For those of you who may know differently, please forgive me, I'm just writing what I think I know, based on my research and experiences over the last few months. 

To get into school, our children need to be evaluated for eligibility for services.  Often a psychological test called the Batelle is administered.  It's not an IQ test, nor is an IQ test necessary.  The Batelle, in conjunction with speech, gross motor and fine motor evaluations,  does score the child's development.  The child is given a label, which is, in most cases, DD (Developmental Delay).  There are other labels, but this one really encompases our kids pretty well in a nutshell for all intents and purposes. 

Before the age of 7 (at least in our state, and from what I've heard from so many others, but I'm not actually sure if it's the case everywhere), the label needs to be changed, as DD no longer exists beyond that, and another evaluation for eligibility needs to occur.  If you ask me why there needs to be labels or label changes, I can't really answer that.  It just is.  I get that.  I've heard it for years now.  To change that label, more testing needs to be done.  Again, speech, gross motor and fine motor evals will be done, along with an academic eval, vision and hearing screens, and a psychological evaluation to measure cognitive development (IQ test). 

So many people fight against the IQ test, and I totally understand why.  However, the availability of new labels is limited.  None of the labels applies to Samantha except ID (Intellectual Disability), which requires the cognitive testing to get it.  And people hate that ID label.  Here's my understanding of why.

Think about it.  You have the ID label, a perfect IEP team who know your child and his/her abilities and strengths, a loving, nurturing, inclusive classroom environment in which your child is supported and his/her needs met.  And then you move.  To another school/district/county/state.  And before your child even sets foot in the new school, you have an IEP meeting to determine placement.  The team, all strangers before you, takes a quick look at your child's name, age, and label, and determine, prejudicially, that because the child has an intellectual disability, because their school/district/county/state is strapped for cash and the budget is tight, they need to get that child into a self-contained classroom to save their resources, lighten up the already bursting-to-capacity general education classrooms.  (I'm definitely not knocking self-contained classrooms here.  That setting is absolutely critical for some children who thrive better in that environment.  I'm refering only to the example of a child thriving in an inclusive setting.)  And then the fight begins. 

So, in my understanding, that's why people dislike the ID label so much.  I do, too. 

BUT there are options to avoid it.  In our case, because that is the only label applicable to Samantha, we needed to be given that label.  To be given that label, we needed the IQ testing (the testing score is not relevant to the process, really - just the fact that she does need services).  Now that we have that label, we have signed that we do not agree with that label, and are requesting an appeal.  At the appeal (not a lengthy process - just another meeting of many of the same people on her team), we will request the alternate title, Child With a Disability, a label that you may not have been told about.  A label that is kind of an overlay over the ID label, a label that will force future administrations/educators/schools/districts/etc. to look more closely into Samantha's file to determine exactly what the nature of her disability is, to see all of her strengths, to see what she's accomplished, to see PAST the fact that she *does* have an intellectual disability.  Does it mean we won't have issues down the line?  No, but if it can minimize the risk, then I'm all for it.

Once that's finalized, we don't have to have the testing anymore.  We will have the option every 3 years, I believe, which may be useful if we needed the new information for some reason or another, but we will not again be required to have it for any reason.  And I have been told that we may need to change Child With a Disability back to Intellectual Disability at some point when Samantha is around 16 years old, although that would be our own choice and would have something to do with securing post-educational services.  I'll have to do more research to find out about that, though.

So there you have it...


Anna Theurer said...

Thanks for walking us through the process! I do know that Ellie must be retested in 3 years for when she enters kindergarten. At this point, I am not sure what it entails. The label of ID never bothered me until I read your reasoning of why it would be good to avoid it. I love reading about your insight and experiences :-)

Jenny said...

I'm glad you explained all this in detail, I have always wondered how things work down there in the States.

Stephanie said...

I've been waiting to hear this from you and I knew it would be excellent. I'm forwarding this post to several friends of mine who have kiddos that are Owen's age and are trying to figure these things out. You rock!

Leah said...

Wow, thank you for this insight. It will be interest to see how other school systems vary. I know that the likelihood that we'll stay in the same school district long term is pretty so, so this can definitely be a difficult decision. It sounds like you guys have been an educated and sound decision for Sammi.

Lisa said...

I've been wondering if they have already "labeled" Cate without our knowledge or if our state doesn't do that. We've never had a meeting outside the IEP process about it and although she has been tested and I've never seen or signed anything that said "ID" on it. I requested an eval this year for our medicaid app and the school psych told me we didn't have to deal with eligibility again until she was 9 - which would be 3 years. Interesting - I may just have to call her.

Cindy said...

I like that alternative title, Child with a Disability. It requires the educators to look at the child first, not the disability. I'm so glad things are changing for the better. All of you younger parents have so much more determination to change the world for 'our' kids then I did. I'm excited to see what the future holds, because of your vision.

Sue Adelman said...

Hi, We have lived so many of the situations you mention. Dev is 16 (amazing I might add). She went to preschool in Florida, K in Indiana, 1-7 in Michigan, and now 8-10 in Washington. Each place has had it's own rules and stupidities... Main thing to watch out for is that you still qualify for Speech and OT!! The ID label may be a way to limit other services--something to check on! As for Dev, they tried to put her in a "contained-low level" class here in Seattle before even meeting her... Seattle does have away to go in the SPED area. We were not happy. 4 days and lots of drama later, she moved schools and was in an inclusion model. Take a look at a possible future at our site and on facebook

Anna said...

That "jolt". We all get it. That is why I literally cried when I read your comments. That jolt hurts. The pain doesn't last as long as it used to, but it still leaves a sting at times. I almost felt relief this past Fall when the evaluator mentioned she felt Lil G was approx 18 -24 month level and she is 7 years old. The relief was because it was exactly where I thought she was. I have learned that I can only compare Lil G to where she was. I can't compare her to anyone, DS or not. Given our special circumstances and hurdles she needs us to stay focused on where we were and see the joy of the progress we've made in two short years! Thank you for the great post!

Kristi said...

I totally understand your frustration with all the testing. And remember even kids who are typically developing sometimes just aren't good test takers!!! Forget what things say on paper, some things can't be measured by tests and I believe our kids are one of those things!

Alicia Llanas said...

Hola my friend! i just saw this and the other post, hugs!!!!

well i didnt knew about this process and labels in the US

here in mexico, when you apply for school there is a small part where the goverment ask you if your kid has a disabily, if so to fill which type, and of course we fit in the one of intelectual disabilty

here they call the kids with disabilities at school as kids with special educational needs, but the interesting is that once the kids go to school, yes, there are some kids that dont have a disability but yet they dont learn the same way, so there are kids with special educational needs with disabilites and without disabilities that get support from the special ed team

here we dont have separate classes for the kids with special educational needs, basically because there is not extra room, and because there are still many special ed schools where many still go

so the kids are in the classes, with their classmates and have pull-out time for math, reading and speech.

the problem we have is that most of the time the classroom teachers are not used to have kids with special educational needs so they dont do their job with them, and this is how it fails education for kids with disabilities and run to special needs schools

Anonymous said...


i'm a Special ed teacher in England and have been reading your blog for a while! hope thats ok! you may know this as your husband is British but in the UK we don't label kids as such, we say they have a "statement" which is short for a Statement of Special educational needs. this is kind of like your IEP and each term (semester an IEP is drawn up from the statement)
As an educator when I get a new student I read their Statement to get an idea of their needs, I don't get told "this kid is ID" or "DD" etc, it means I can't make jusgement and have to read the document to find out what the pupils needs, strengths etc are.

Becca said...

Anonymous - wow, that's really interesting, and makes perfect sense to me! I *suspect* that the reason we have all the different labels, etc., may have something to do with county/state funding. Then again, the label also encompases any child who needs some sort of modification, I think, even like a food allergy or health concern (seizure disorder, etc.). Very interesting...

Melissa said...

When Claire had her assessments to go into preschool I requested that they not be scored. I didn't need to see exactly how delayed she was, and the school didn't need the number because her skills were behind. I've thought a lot about IQ testing, and at this point am against it, but I know that it will probably have to be revisited the older Claire gets.