My Daughter is not Broken – The System is

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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.

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Endings and Beginnings

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The first few years are a nightmare..you’re scrabbling, reaching, trying to find answers, researching, filling in endless paperwork, trying to find a good team to support your child. Sleepless nights, endless questions, insecurity, doubt and fear. Then you slowly get it sorted. You find the right therapists, doctors, daycare. You find support networks, and answers. You stop having to struggle and advocate all the time. You stop fearing so much for your child’s very life. And you feel like you have finally got it worked out. To some extent at least. You know challenges are yet to come, but they start to feel far in the future.

Then life happens. Your child grows a little older, they outgrow “early intervention”, it is time to start school, leave behind the secure cocoon you have woven for them. Old challenges are overcome, and new ones have arisen. And you find yourself on quicksand once again. All those wonderful supports you had, slipping from your reach. All that hard earned knowledge, now outdated and needing a bit of an upgrade. Time to start over. Endless reams of paperwork, again. Interviewing potential schools. Moving house. Trying to find new therapists. New doctors. New teachers to support and guide your child. New interventions to assist with emerging issues. And, momentarily, fear sets in. Echoes of that early time of fear and uncertainty come to haunt you in the early hours before dawn.

You find yourself afraid, feeling inadequate, and unsure whether you have the emotional and physical reserves to do this..again. And then you pause..and breathe..and realise that despite the fear, the tiredness, and the (yes) resentment you sometimes feel at having to do all of this..that you are so much better equipped than you were the first time around. Now you have the guidance of others to call on, from having found support networks. Now you have confidence to back you up..you have done this before, with far less knowledge at hand, and when you were far more depleted. You can do this.

And then, the realisation of how far both you and your child have come in such a relatively short time dawns on you. It is, really, a miracle of sorts. It doesn’t dismiss the effort or exhaustion of having to once more educate a new team about your child’s strengths and weaknesses. But it does give you a confidence you didn’t have before, A tentative confidence to be sure, a flickering flame, not a blazing fire..but far more confidence than you had five years ago, when you battled the system to be heard. Now you know that you have a voice, and that you will not be defeated. Now you know that you can find your way through the maze.

To all parents going through change, special needs or not, know that you have what it takes. A parent’s love can overcome many obstacles.

Today Sophie had her last session with her occupational therapist, Robyn, who she has been seeing for three years..since she was two years old. And last night I shed a few tears as I thought of this chapter of Sophie’s life being over. And as I watched her carefully and painstakingly writing a thank you card for Robyn, and painting a “dolls’ house” to give to Robyn as a gift. Because, back then, I never could have imagined that Sophie would be able to do this..

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Next month Sophie starts prep. Far from where we now live. Entailing new teachers, therapists and supports. And I have been overwhelmed. And anxious.

But on reflection, I see the fears are in me, not in her. I know now that my beautiful, brave, joyful and hardworking little girl will continue to amaze and surprise me. And that I must NEVER underestimate her gifts and her potential. Sophie is an amazing teacher…reminding me each and everyday to never underestimate anyone, and to never give up. And so I step out and step up, knowing that if my tiny little angel of a girl can face the world with courage, I can do no less. Onwards we go 🙂