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Tuesday, March 29, 2011

Cognitive Testing: Hoping for a Diagnosis

Today I have an appointment with the doctor who has been seeing my son.  Back in late February, hub and I began the process of having Bubba evaluated by a professional.  Dr. P. has administered the Woodcock-Johnson Tests of Cognitive Ability (WJ III), along a variety of other tests.  The goal is to determine exactly where he stands cognitively and achievement-wise for a boy of seven, and to identify any developmental or learning disabilities that may be impacting his ability to manage himself behaviorally while in the public school setting.

Back in preschool, Bub was tested using the K-Seals testing protocol.  The school district administered that test, and having found that he capped the scores (99th percentile across the board), determined that “No Further Services are Indicated”—in other words, he did not present with any indication of a learning or developmental disability.  The fact that he scored several standard deviations above the typical four-year-old did not qualify him for any “Student Services” in our district.  In New Hampshire, standard deviations only matter when a student is below the norm. 

But from the beginning of Kindergarten, he had trouble.  Cacophony is his kryptonite—it cuts him off at the knees.  He also has a low threshold for tolerating redundancy, repetition and rote.  Given that he’s seven, this manifests itself in what appears to be defiant behavior.  Don’t misunderstand; he’s not an angry boy.  But some days, his patience for this is short.  Elementary school, particularly the early years, is filled with repetition. 

Think about the frustration you feel when you’re asked to redo things you’ve already done.  Think about how frustrating it is to have produced a piece of work, or written a great essay or blog post, and then having to do it all over again, because someone lost the file or your computer died.  Or, you handed it in to your boss, who said, “Great Job!” and then asked you to do basically the same thing all over again the next day.  

Some days, that worksheet about adding up coins really ticks you off—you’ve done this, and you’ve proven (how many times?) that you know how to make change, you know how to add up three quarters, two dimes and a nickel, and you know that, yes, in fact, you DO have enough money to buy the goddamn teddy bear.     (He doesn’t say goddamn.  I’m saying it for him.)  So he gets pissed, and flat-out refuses to do the worksheet.

And once he’s made that declaration, for whatever reason, he seems to believe that there’s no going back.  He’s said he won’t do it, he’s not going to do it, and he’ll say it again.  Right before he dives and hides under his desk.  Because, let’s remember, he’s seven.  He knows he shouldn’t refuse to do work that his teacher assigns him, and once he’s stepped off that ledge, that’s it.  Next thing you know, he’s out of the classroom, off to the principal’s office or to the behavior specialist. 

He’s getting a better handle on keeping himself under control.  His issues in the classroom are fewer and farther between, now that he has regular appointments w/ the school behavior specialist.  But they still crop up, particularly if the setting that he’s dealing with is loud and chaotic (see Kryptonite, above).

So it was with mixed emotions that we sought out testing.  There is the inherently curious side of hub and me--the side that wants to quantify to a certain extent, just exactly what we are dealing with in terms of his cognitive abilities.   Then there is the little voice that tells us, “The school thinks there’s a problem with him, emotionally or developmentally, that causes him to act out at times…something must be wrong with him.” I have several other inner voices that argue with that voice:  Typical Mom--He’s my boy—there’s NOTHING wrong with him;  2) Gifted Mom--Of course he’s different than other kids—thank you, asynchronous development;  3) Desperate Mom—Please, please just find something that will allow us to create an IEP or a 504 plan for this child so that he can have an education that is suited to his atypical neurological development.

It’s the “Desperate Mom” side of me that is riddled with guilt.  Despite my educational background (I have a degree in Education from the University of Massachusetts), I feel like a faker.  I feel like I am grasping at straws trying to find a way to force the school into providing an appropriate education for my boy.  The only way to ensure that the school provides a curriculum that meets his unique needs is if he is tagged as “Special Needs”.  Only then, will an education suited for a gifted student be mandated by NH law.  I learned back in the early-nineties that “Special Needs” by definition actually includes intellectually gifted students.  In practice, however, Special Education in public schools actually is limited to those students who would be covered by IDEA (the Individuals with Disabilities Education Act).  If there’s no disability, there is no mandate that he receive a differentiated education—and then, it’s entirely up to each year’s teacher.

So here I sit, hoping for a diagnosis, in order for the school to stop brushing aside the fact that his sometimes negative behavior is directly related to his elevated cognitive skills;  so the school can address the cognitive and behavioral issues in tandem instead of piecemeal.  I feel like I’m trying to game the system.  But without a diagnosis, the school will continue to address his behavior in a vacuum, and won’t set up a program that will follow him through the school system.  This year in school has been great for Bubba--his teacher is fantastic with differentiation--but last year was an unmitigated disaster, thanks to some serious rigidity and an armchair diagnosis of autism (that the school later determined was unfounded). Future years are a crap-shoot without a diagnosis.

In a few hours, I’ll get a peek into my boy’s brain, courtesy of a professional who has a solid background in both intellectual giftedness and autism spectrum disorders, and an absence of personal bias.  Her report will include recommendations for his education, and insight into exactly how that brain of his operates on a regular basis.  No matter what comes out of all this testing, he’s still my little boy.  I just never expected that I would be in a position of hoping that there’s something that can be identified as a problematic issue, in order to ensure that he gets an education appropriate for his skills and aptitudes. 

14 comments:

Headless Mom said...

I could have written this. Different, a little, but still anxious.

xoxo for what you want!

Just Margaret said...

Thanks, Kendra...It wasn't what I expected, but I will update soon!

Sharon said...

Believe your instincts about your child.
One of my daughters had "cognitive" issues early on. She was evaluated at Bryn Mawr College's Psychology Department. I was told that based on her drawing of a doll, she had made the head too big. This they informed me, indicated that she had underdeveloped cognition abilities. I asked what type of doll she was given to draw. "Raggedy Ann" the therapist told me. "Doesn't Raggedy Ann have a head significantly bigger than her body?" I questioned. Of course, I was told that was irrelevant. And, I was told that I was in denial.
Turns out that daughter is exceptionally intelligent. As an adult she has a very powerful career; is an internationally respected equestrian; and, actually had some significant hearing loss that went undiagnosed due to her having taught herself to read lips!!
Margaret, take those results and fight for you child with what you know to be true about him.

Just Margaret said...

Sharon, thank you. I was visiting my sister just this morning, and she essentially said the same thing for similar reasons. It can be hard going on 'gut', but hearing two wise women tell me to do so gives me that more confidence.

Missy said...

We went through testing when our now 9 year old was 4, going on 5. She had a teacher who only wanted to think behavior disorder, we "suspected" giftedness. Everything turned out well and we were able to start addressing her needs at an early age, which has helped her tremendously now that she's 9. Good luck to you. It's hard, taking this leap, but I always believe that knowledge is power.

Just Margaret said...

Knowledge *is* power, Missy, thank you. It's great to hear from someone who's "been there, done that". :)

Christina said...

Great post, Margaret. You've put it all down so eloquently. I really admire your ability to write so well and so precisely.

Whatever the outcome, I know that you will always do your very best for children. You are a fantastic advocate.

Just Margaret said...

Thank you for the vote of confidence, and your kind words, my dear friend. :)

Mom et al said...

Margaret, I have little experience with what your family is going through, but you clearly understand your son very well. I agree with what the previous commenters are saying. You are his mother and know him best. Keep following your gut. I hope that the news you received will pave a way for you to move foward with a plan. Peace, friend.

Just Margaret said...

Thank you so much, Maria! :) I'll update shortly, too...

TZT said...

Wow, I hope this went well! We have similar problems here in Ohio - the smattering of resources that have existed for gifted segment of the special needs population have been done away with.

I've put my son in Montessori school, which has been tough to afford. It has its own limitations, but his ability to move beyond what he knows (and not have the curriculum kill his impulses for deep learning in math and science) have made it worth it.

As I've been told by friends who know so often - he has a serious advantage in that he has an advocate like you!

Just Margaret said...

Thanks, TZT--our resources are *severely* limited, as we live in very rural N.H. The closest montessori is over 20 miles away, and isn't necessarily our best option. Choices do not abound in these parts...relocation may wind up being our best option--

Thanks for stopping by!

WritRams said...

I cried for you on this post. You are such a strong and amazing woman. I pray that your very gifted son will find the place and people (at school) that will allow him to shine.

Just Margaret said...

((WritRams)) thank you...