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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Invisible Disabilities (Otherwise known as … “She seems fine to me”)

Some kids with special needs have obvious challenges. They may be in a wheel chair, or have a naso-gastric feeding tube, or facial deformities, or missing limbs. Something that people can see, that people may make allowances for, and (hopefully) have compassion for.

Then there are the millions of kids around the world who have “invisible disabilities”. Kids who scream and hit and bite their parents in the supermarket. Who then get judged for being “brats” and whose parents get judged for being “bad parents”. Or the kids who get bullied at school because they have two left feet, can’t throw or catch a ball and run with their hands flapping wildly in the air. They always get picked last for sports teams. They sit there, humiliated, knowing no one wants them on their team, not knowing what they can do to make it better. Or the kids who continually interrupt, droning on and on about topics of interest only to themselves, blurting out tactless comments and then getting worked up when something seemingly insignificant goes wrong. They have trouble maintaining friendships and look on miserably from the sidelines at the other kids playing and chatting together, wondering what is wrong with them and why “nobody likes them”.
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Spare a thought for those kids. And their parents. The first child may have sensory processing disorder. They find the sensory input at the supermarket impossible to deal with, and don’t have typical emotional regulation due to neurological differences in their brains. So they panic and lash out. Their systems are in overload and their behaviour is NOT a sign of bad parenting.

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The second child may have low tone (hypotonia). This is a neurological disorder that means the messages from the brain to the body don’t work as quickly as they do for other kids. In reality their body will never be as strong or agile as every other kid in the class, and they will always have to work harder just to do simple things like use a knife and fork and stay upright in their chair at school.

The third child may have high functioning autism (Asperger’s syndrome). Their neurological differences mean that the subtleties of body language and social graces are lost on them. Unlike typically developing children, children with autism need to be specifically taught about emotions, and body language, and a myriad of other things that most of us never have to think about. On top of that, the part of the brain that is designed to detect potential threats (the amygdala) can be overactive in autistic children. So something that seems harmless to us can cause a huge release of cortisol and adrenalin in these kids, which then activates the fight/flight response. This overrides the “thinking” part of the brain in the pre-frontal cortex, and means that autistic kids (and adults) can flip into a state of panic about seemingly mundane things. They aren’t being precious, they aren’t deliberately being rude, they aren’t “chucking a tantrum” to get their own way. Their brain has flipped into survival panic mode. It can take lots of training and immense self-discipline for these kids to learn to “self-calm’. Some may never learn, despite their best efforts and the best efforts of everyone around them.

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The differences these kids live with don’t magically get cured, or disappear, or get better simply with the passing of time. Neuroplasticity is an amazing thing however, and improvements can and sometimes do happen. But not without significant intervention and hard work by the child and all of the people in that child’s support network. Intervention that takes time, and effort, and costs money, and often requires the child (and sometimes the parents) to push themselves continually beyond their comfort zones. Sometimes those kids can make great improvements. To the point where the casual observer can’t quite pick the problems, and wonders what all the fuss is about. And then tells the parents that the child “seems just fine” to them. And the child may indeed seem “just fine”. But things may look a little different behind the scenes.

Children with “invisible disabilities”, including my own daughter,  are often working extremely hard to function as well as they do. Unlike other children of their age, they don’t always learn things just by observing. They often need to be explicitly taught things that other children learn easily and naturally as part of “normal development”. Many kids who seem “just fine” are attending therapy sessions five or more times per week so that they can make some attempt at keeping up with their peers. Sessions which require them to concentrate, to work hard, to sometimes push themselves past their limits. They are often overwhelmed by loud noises, or too much visual stimulation. Their bodies may tire more easily than other children, their attention spans may be shorter. So everything requires that extra effort. The kids who seem “just fine” are often working very hard to achieve that. And very often their parents are working hard along with them.

I know from my own experience, and from talking to other special needs parents,  that many of us can struggle with finding the time and energy required to deal with the system. We worry about the time we have to take off work to attend medical appointments and therapies, and the subsequent effect that has on our career progression. Many of us have costs we never imagined having, and earn less each year because we can’t manage our child’s needs and a full time job (at least not without losing our sanity). We are climbing down the career ladder, not up it.

We scrabble to find the money required to pay for the therapies, and to find the effort and discipline required to implement the therapy into the home environment. We rearrange schedules to fit in trips to the doctor for medical certificates just so our children can be approved to have swimming lessons, or go to ballet. Because we live in a crazy world of litigation, and no one wants to take a kid into their class that might have a higher potential for injury unless they have a doctor’s clearance.

And then there is the paperwork. The crazy mind-numbing paperwork. Dozens of pages to fill in to qualify for a miserly $52 from the government each week for “disability support”. Literally hundreds of pages of paperwork to deal with each year. Seriously. Sophie has just turned six and I have three ring binders that are bursting at the seams, filled to the brim with therapists’ reports, medical reports, funding applications, treatment protocols etc. Stack them together and it equates to more than 10 inches of medical paperwork. Meetings with the school at least twice a year (on top of all the regular parent teacher interviews) to negotiate an Individualised Education Plan for your child. And ad hoc meetings to follow up on that plan, because more often than not the things that are promised to help your child are never implemented. And it falls to you as the parent to fight the good fight with the school to ensure that “inclusive education” policies are actually followed.

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Parents may be struggling with chronic sleep deprivation, because their child has ongoing sleep disturbances. They are possibly exhausted from holding down a job, managing a home, managing their child’s additional needs and then staying up late to home-bake the speciality foods their child requires to stay healthy. And they are almost certainly dealing with the ever present niggling anxiety of the “what ifs” and “what will be”…What if that elevated urea level in her blood keeps creeping up, and we are looking at kidney failure? How long until he will need those knee replacements? Will her hearing test be okay this time? Will he be able to live independently?

Then there is the constant questioning of our roles, our values, our choices.. Where do we draw the line? How much therapy is not enough? How much is too much? How much time should we dedicate to helping our kids with therapies and nutritional interventions and alternative medicine and mainstream interventions? How much of our time and resources do we dedicate towards trying to give them the best chance of getting on in the big bad world, and how much time can we spend just being regular mums or dads, loving our kids, playing with our kids? Should I sell the house to pay for his therapy? Or keep the house in case he can’t support himself later? Is it okay for me to spend that $200 on going away for a family camping weekend when that could cover two therapy sessions? Is it okay for me to have a life, have some fun, buy some flowers for the garden, when I could spend that money on therapy? How can I ask for people to contribute to her fundraiser, when I just bought myself a new shirt ? How do we find a balance, how do we do all of this and not lose ourselves in it all? Sometimes we don’t find a balance. Sometimes things swing wildly out of control. Sometimes we caught up in it, lost in it, buried in it.

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Special needs parents may find themselves withdrawing from friends, cancelling attendance at social events, forgetting to reply to that email or text message you sent to them. At their times of greatest stress, they may become cranky, oversensitive, hard to be around. You see once loving couples sniping at each other, or withdrawing from each other, or running away from it all by resorting to affairs, or one more glass of wine, or just another few hours on that computer game. And it can be hard to understand these changes you see in these people you thought you knew. Because without knowing what goes on behind the scenes, what you see is a kid who “seems alright to you”. Things can’t be that tough can they? What is the big deal? I’m not saying our lives are one big ongoing tragedy, that we limp through each day hating the world and everything in it. Our lives are full of joys as well. But the reality is that our experience of parenting can be quite different to the experiences of parents with neurotypical kids. And that in cases of “invisible disability”, much of the struggle can be hidden. And that’s a lonely place to be.

Don’t get me wrong, I’m not saying that kids with “invisible disabilities” have it harder than children with other types of disabilities. Parents of kids with highly visible disabilities get all of the same work and stress and financial distress, sometimes more, much more. This isn’t a competition. We are all in this together. I’m simply focussing on what I call “invisible disabilities” today in the hope of raising awareness around something that isn’t so easy for a casual observer to see.

My own daughter, Sophie, has challenges that may not be readily apparent to someone in the street. Things you may not see unless you live with us.. Things you may not notice if you haven’t had exposure to the secret world of being a therapist, or an educator, or a doctor, or a special needs parent. But challenges that exist nonetheless. Challenges that affect her every single day, and that will continue to affect her for the rest of her life. Challenges that she works damn hard at therapy to overcome. But in many ways she seems “just fine”. So she sometimes doesn’t get cut slack in areas where she needs it. Sometimes I get tired of feeling like I have to explain my daughter’s behaviours, or justify why I might use a particular parenting technique. Sometimes I get tired of feeling unsupported because people think she is “just fine”.

Again, don’t get me wrong, I’m eternally grateful that Sophie doesn’t have to deal with some of the really serious issues that other children with special needs have to deal with. She isn’t in a wheelchair, she hasn’t had to have heart surgery, she walks, she talks, she eats, she jumps and laughs and plays and dances and sings. She has an incredible memory and, at just six, a vocabulary that any twelve year old would be proud of. She lights up my life with her joy and enthusiasm. And I never cease to be grateful for these miracles. In many ways, she IS just fine. And hearing that is sure as hell better than hearing the alternative…”Wow..she seems really f8cked up!!!” But hearing it can sometimes feel dismissive of the challenges she has overcome, and the challenges she still faces each day.

Sophie has low muscle tone and hyperflexible joints. Big deal you say. And yes, compared to being in a wheelchair, these things are a breeze. But these issues affect many aspects of her day to day living. They affect her speech articulation and her fine and gross motor skills. She only just became safe to walk up and down stairs without supervision this year, and only learnt to take her own shirt off about six months ago, at the age of five and a half, A skill that most kids have achieved by the age of two. She only became really competent with a spoon this year, and still spills things much more often than you would imagine. Her low muscle tone makes it hard for her to sit in a seat in class for any length of time. She uses a back support, and a tilted desk, and special pencil grips, and a wrist support to help her in the classroom. Yet still she struggles to keep up with the kids in her class. Not because she isn’t smart, but because her hands can’t get the pencil to do what she wants it to do. And then her low tone makes her tire easily, making it difficult to concentrate, and hence difficult to learn Her sensory issues mean that she is under constant low level stress in the classroom, because 25 prep students make noise. A lot of noise. And that noise throws her system into a state of disarray. So then she can start to act out. Or withdraw.

Sophie’s Asperger’s and sensory issues means that she has difficulty in the playground. Observing casually you may not see anything out of place. Looks like she is playing and getting on just fine. But if you take a closer look you will see that at school she is always engaging in parallel play – playing beside the other kids, not with them. Lost in her own little imaginary world of fairies and unicorns. Which is not in itself a bad thing – hell, I love fairies and unicorns. But it is a problem when Sophie wants to be part of the joint play, and just can’t figure out how to make that happen. A child of her age should be well and truly capable of a reciprocal social interaction with peers of up to 15 minutes, and Sophie is still working on a three minute goal. She’s okay as long as she gets to direct the play, or if she is with kids she is very familiar with, or there is an adult involved, but has no idea how be included in group play in the school playground.

Sophie also has issues with histone methylation. So for the rest of her life she has to have a different dietary regime and take supplements to support her functioning. Not a big deal in the grand scheme of things. Not something you can tell by looking at her. But if she misses her supplements, it shows. The reports from her therapists start to mention attention problems, her handwriting suffers, she starts pushing kids around in class. She tells me “I find it hard to play on the playground because normally I can run, but now I can only walk”. Then the teacher pulls me aside and gently tells me that Sophie has been falling out of her seat a bit this week, and has been unable to control her outbursts in class.

There are other challenges, more than a few, but I won’t bore you with the details of all that in this post. Because the exact nature of all of Sophie’s challenges isn’t really the point of this post. The point of this post is really to raise awareness about what might be going on behind the scenes, not just for our family, but for all parents and kids dealing “invisible disabilities”. The point is to raise awareness of the fact that sometimes, hearing the words “she seems fine to me” , however well intended, may not have the desired effect.

It’s kind of a double edged sword – because part of us swells with pride when we hear these words, and we take the time to reflect on how far our child has come. But many of us also secretly (or not so secretly) wish for understanding. We want people to understand that getting our kids to the point where they seem “just fine” often comes at a great financial, emotional and physical cost to all involved. And hearing those words, no matter how well meaning, can feel dismissive of the challenges our children have overcome. Those words can make us feel that our child’s ongoing challenges are of no consequence. And that we have no right to be tired, overwhelmed and disheartened at times. It can make a special needs parent feel unheard, unsupported, misunderstood, overwhelmed and invalidated,. It’s not pity we are after, but understanding and compassion can go a long way. By all means tell us that our little ones are doing fabulously, that we are doing a great job – sometimes that is all we need to hear. But please don’t dismiss our struggles. Because sometimes we really need that shoulder to lean on, that quiet chat over a cup of tea (or a bottle of wine), that chance to cry and share our worries and feel HEARD. So that we can stand up straight and tall again, feel pride in what our children have achieved and what we have done to support them, and move forwards. We don’t want to live in the world of special needs all the time. In many ways we are still the people we were before our children were born, we want to laugh and play and have fun and experience joy and silliness and beauty and love and all the world has to offer. But sometimes we may just need that little bit of understanding to help get us through our dark places.

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P.S. To all you special needs parents out there whose children have visible disabilities..please know that I am in no way trying to diminish your struggles. As I said in my post, you deal with all of this and often more. And to any of you out there suffering other invisible disabilities like chronic pain, hearing loss, chronic fatigue, depression, anxiety, autoimmune conditions and the list goes on and on..I am not diminishing your struggles either. I hope that my post may help people to take a step back and choose not to judge people in ANY situation. Because we really rarely have a clue about what people deal with in their lives. If we all took the time to be just that little bit more compassionate and understanding towards each other, the world would be a much finer place.
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