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...