My Daughter is not Broken – The System is

fish

The system, the system – ah, what a frustrating beast it can be.

Yesterday we had an appointment with an (unnamed, but well regarded) psych clinic.  The purpose of the appointment was to discuss Sophie’s test results, from a battery of tests designed to give us a comprehensive overview of her “neuropsychological function and cognitive profile”.  Just for the record – we do this testing purely for schooling purposes, so we can advocate for what Sophie needs within “the system”. No need for anyone to fret – I’m not going to put my daughter in a box based on her results 🙂

So yesterday we went for answers, and instead came back with a very big question.  So here is the question – how on earth is the school system supposed to cope with my daughter’s beautiful and unique differences (or anyone’s differences for that matter), if the psychologists who specialise in this field can’t deal with it?

After a long discussion about Sophie’s test results, we determined that the professionals involved in her testing couldn’t really justify or make much sense of the results themselves. According to the test results, Sophie has (apparently) dropped 35 percentiles (no, that is not a percentage, and it is not percentage points) in her results for the standard  NEPSY IQ test since she was last tested (18 months ago) . Her current test results show Sophie as scoring just below average for her overall IQ.  She was tested just 18 months ago, and at that time tested as high average.  Now I know for a fact she ain’t getting dumber.   And these tests are supposedly “valid and reliable”. So why the discrepancy?

To delve a little further, they got Sophie to complete a battery of standardised age-equivalent/ year level equivalent academic tests. And for many of those tests, Sophie scored well above what was expected.  Sophie has just finished Grade 1. For some of her academic test results, she scored at the Grade 6 level (equated to 11.9 years of age – Sophie is 7 years old).  And all of Sophie’s results were at the Grade 2 level  or above. So to clarify – all measures of her knowledge and skills in the academic context are measuring at a minimum of Grade 2 level, some at Grade 3, some at Grade 4, quite a few at Grade 5 and some at Grade 6 level.

The “experts” told us that Sophie’s performance was outstanding on all the academic measures, and that she should be getting all As and Bs.  they also told us that, given how well she performed on all the academic measures, there is no way her IQ score can be correct.  They informed us that they believe that Sophie’s test results were affected by her motivation on the day (apparently she was agitated, getting in and out of her chair. saying ‘I don’t know” and asking for breaks etc. throughout the testing). So they told me they think she may have ADHD.

They also told me they think Sophie may not have Asperger’s.  Let’s remember that Sophie has been formally diagnosed with Asperger’s by a psychiatrist, in conjunction with her occupational therapist and her speech therapist.  And that her Asperger’s diagnosis has been validated by many other health professionals over the years.   And,  to be honest, if we are going to use any labels with Sophie – Aspie  is one that well and truly fits.  We were told that they believe that Sophie is having problems with her peer relations not because she has Asperger’s, but because she is “so much smarter than them”.  And because she is “probably bored at school” and because she “probably wants to talk about things her peers don’t want to talk about”. Um, wait just a second…didn’t you just tell me her IQ was below average? Oh hang on – a year ago you told me her IQ was above average…. Oh yeah, even though she is below average she is actually way above average at school stuff?  I’m confused…

Now the “I’m too smart for my peers” theory is a nice little theory. Yep, that’s the problem. Um, maybe not. Or maybe a bit of both. Let’s just say that whether this current clinic thinks she has Asperger’s or not – Sophie’s social difficulties are not all because she is “too smart” (maybe some of them are – but not all 🙂 ) Sophie undoubtedly has deficits in recognition of facial expressions, social emotions etc. that are completely consistent with her Asperger’s diagnosis.

Anyway – let’s get back to the ADHD thing…At school Sophie is (apparently) always in her chair, has excellent behavior, is always putting in great effort and is an “engaged and conscientious learner”.  According to her teacher (who has kids on the spectrum herself), Sophie is showing almost no signs of ADHD in the classroom setting. So one would think that her academic skills should be able to show up in that environment. But no.  At school she is getting mostly Cs.

Why?  Because, again, it ain’t that simple..The IQ tests Sophie was given included things like writing tasks and copying of figures. Now let’s remember that Sophie has fine and gross motor delays, due to hypotonia and hyperflexible joints and dyspraxia. No, she isn’t being lazy. The signals between her muscles and her brain don’t work as fast as someone without hypotonia. And the academic tests she was given were almost all reading out loud, selecting answers from a list and/or giving oral answers. Which means her physical impairments did not impact on her performance.

And when it comes to variations in test results –  let’s not forget the other things that Sophie has to contend with.  Like sensory issues that impact on her day-to-day, hour-to -hour, minute-to-minute performance. And the fact that she has some executive function difficulties.

Now – what do we do about all of this? Well, it was recommended about 18 months ago that, due to her motor issues, Sophie should not be given any form of written testing at school. Or that, should written testing be required,  she should be given additional time to compensate for her physical differences.  We passed these recommendations on to the school.  But does anyone listen? Certainly the school does not. The IQ testers were also supposed to accommodate her differences, by not using written measures. Did they listen? No. If my kid was in a wheelchair, would you ask her to climb a ladder??? I don’t think so.

The only thing any of these damn tests seem to be telling me at the moment is that Sophie is not going to perform reliably on tests.

Now I know there may be people reading this post who may get upset that I have shared so much of Sophie’s personal information on here. Perhaps I may be accused of sharing too much. But in reality – it isn’t information that is in any way a reflection of who she really is, or what really matters. All of these figures and test results are just that – figures and test results.  On tests that are supposedly valid and reliable.  But apparently are not valid and reliable when it comes to Sophie. And so I imagine they probably aren’t particularly useful for many children.  Be assured that there is probably no real reason to get upset about my sharing our experience on here. I’m not going to box Sophie in because of this rubbish. I’m simply going to use the information to help the school to understand what she needs to NOT fall through the cracks,. I will nurture her, help her to shine, focus on her strengths, and support her in her areas of “weakness”. I’m sharing this on here because very often people keep this kind of thing as “personal information”, ” family information”, “secret information”…information that shouldn’t be shared. Why? Because people will label her? Judge her? Maybe they will – but people do that anyway. And those labels will only matter to my daughter if she is brought up to believe  that those labels have any true meaning.   Those labels would potentially damage her if she grew up in a home that told her she should believe everything “the system” tells her. And she certainly isn’t going to get that in this household.

In my opinion – we need to talk MORE about this – instead of keeping it all a secret. Because I know for sure it is not just my daughter, with her “Kabuki Syndrome” and her “Asperger’s” labels, who isn’t best served by the system. Most “normal” kids aren’t well served by the system. That damn school system – the box that takes our beautiful kids and shoves them in the sausage machine and sends them out the other end (more often than not) feeling in some way unhappy about themselves.

I had a label when I was growing up. My label was “highly gifted”. And I believed that label. Did it help me? No. In fact, in later high school years, it made me think I was superman. So I stopped listening. And my grades dropped dramatically.,

Labels, labels, labels. They can be useful to understand certain characteristics, but they sure as heck are not useful in predicting how you are actually going to get on in this world.

The system is broken, not my daughter, and not me.

enough

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