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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Hospital Stay and Discharge

It has taken me a long time to write this post. I debated whether it was necessary/useful. I questioned myself about whether I was just having a whinge, looking for sympathy and being a victim…because I know so many Kabuki families had such a hard start with their kids in terms of medical complications. And so our “hard start” seems like nothing in comparison. This post has also been a while in the making as it was a difficult post to write. I kept getting “writers’ block”, as it was bringing up lots of emotions from that time. In the end I decided to persevere and post, as it provides some background about the state I was in when I started my journey into motherhood.

In some ways we were very lucky, in that Sophie was not born with some of the major medical issues that children with Kabuki can have…such as heart defects, kidney problems, or problems with aspirating fluids. That meant we avoided the trauma of having our child in the neonatal intensive care unit (NICU). While that was indeed a blessing, it also meant that Sophie’s issues were not immediately apparent to the doctors in hospital. It was to take us 20 months of battling the system to obtain our Kabuki diagnosis, and another year to obtain our Aspergers diagnosis…but I’ll save that story for another post.

Despite avoiding the serious medical complications, my introduction to motherhood was not an easy ride.

The first day after Sophie’s birth was a blur. I spent most of it asleep. Or, rather, unconscious.

The first night was anything but peaceful. We had been given permission to remain in the birthing suite so we could have a room to ourselves. The midwives felt that Sophie and I needed some privacy and space to recuperate overnight after the difficult birth. Unfortunately there was a change of shift, bringing a different midwife with a different opinion. This new midwife woke me and demanded to know when the baby had been fed. I told her that Sophie had been fed about 5 hours previously. I told her the doctors had informed me that Sophie was exhausted from the birth, and that it was feasible that she might sleep for up to 10 hours without another feed. The midwife told me in no uncertain terms that this was “absolute rubbish”. To my horror and disbelief she literally lifted my top, pulled hard and sharp on my nipple, and yelled that if I didn’t wake “the baby” to feed ‘”it”, she would express my milk and feed it to “the baby” in a bottle. I simply couldn’t believe it – this was the sort of treatment you read about from the 1960s, not something that really happens in this day and age.

She then proceeded to wake Sophie, and very roughly change her clothes, pushing and pulling her arms and legs, and throwing her about roughly. Poor Sophie started screaming hysterically. A high pitched wail of what sounded like sheer terror.

There was nothing I could physically do to stop this woman’s assault on my body or my baby. I still had the epidural in place and couldn’t walk. I was pinned to the bed. I felt disempowered, humiliated, and enraged at the way she was treating us. I yelled at her to please stop, burst into horrified tears. She didn’t stop, just kept yanking Sophie’s arms and legs, then virtually threw her at me before leaving the room in disgust. She returned just minutes later with an orderly in tow, and I was transferred into a shared ward. So much for some peace and privacy. I remember calling my husband in hysterics. I can’t remember any of the conversation.

The first night passed in a blur of exhaustion, intermingled with feelings of helplessness and pain. Helplessness because, paralysed from the waist down, I couldn’t even get out of bed to comfort Sophie each time she woke screaming. No little kitten mewls now. Just high pitched screams. I had to push the little red button and wait for the nurses to come, in their own time, to deliver my baby to my breast. Sophie didn’t latch very well, and didn’t feed much at any one time.  She kept collapsing into an exhausted sleep, only to wake again screaming within an hour or so. This went on all night. She was in discomfort from the very beginning.

I was experiencing pain in my incision each time I coughed. Which was still quite frequently. The nurses kept enquiring about my pain levels. I told them it was about a 4 when I wasn’t coughing, and an 8 when I was coughing. They looked at me like I was somewhat crazy, and I think they categorised me into the “difficult patient” category. “How could she be having pain? “ I could just see them thinking it. “She can’t be in pain – she has a damn epidural in!” Despite me telling them of my pain, no-one bothered to check my epidural site. And of course I was given no oral pain relief. I shouldn’t have needed it, as I had an epidural in place. It wasn’t until the next day, when they came to remove the epidural, that they discovered I was stuck to the bed with epidural fluid. A significant amount of the anesthetic had leaked onto the bed, not into my spine. I did get a very apologetic visit from the pain management team in a big hurry. But no apology from the various overnight nurses who had been virtually rolling their eyes when I reported my pain to them…only down-turned eyes and avoidance.

The second day was not much better. The only upside was that the nurses decided that I should be in a private room after all. I think a combination of my obvious ongoing distress, plus an obviously distressed and screaming baby helped them to make this decision.

That afternoon Sophie were unresponsive and pale when I was trying to feed her. I could not for the life of me wake her. She was floppy in my arms and completely non-responsive. I hobbled down the hallway to the nurses station yelling out “I can’t wake my baby I can’t wake my baby”. I was sternly reprimanded for carrying her down the hallway as it was “against hospital policy”. WTF? I’m scared that my baby might be unconscious, and I’m supposed to ring the bell and wait for a nurse to come? I don’t think so. This is my BABY we are talking about here. We had to strip her completely and wash her with a cold cloth before she could be roused. Then I went to change her nappy for the first time, and asked if I could be shown how. The nurse looked at me like I was a complete idiot, and made some off hand derogatory comment that I can’t remember. Perhaps it was the thousandth nappy she had changed, but I had never held a newborn before, never changed a nappy, I wanted to be sure I would do it correctly. I didn’t realize I would be expected to know how to do this.

That evening Sophie became jaundiced. They took her and put her in a little crib with the bili lights. She was stripped down to a nappy, and blindfolded. She hated it. She hated it so much that she just screamed and screamed and screamed. After several hours of listening to her screaming at my bedside, with me being able to do nothing to help, I begged the nurses to take her to the nursery so I could get some sleep. I just wanted the screaming to stop. After a couple of hours with no sleep, my guilt at abandoning her overcame me and I begged them to bring her back. She was still crying pitifully. It was so terribly sad. Here she was, brand new to the world, alone, blindfolded, stripped, flayed out, not being cuddled, not being held. The nurses never suggested to me that I could hold her. After a while I somehow figured out that I could hold her in my lap and move the light around so it would shine on her. She stopped screaming. I wish I had figured this out hours earlier. I felt like a bad mother for letting her scream so pitifully in that bili light crib for so many hours. Alone and helpless. And I felt angry that the nurses had not told me it could be different.

I think it was about then that I rang Frank in hysterical tears again. I think my underlying certainty that something was “wrong” with Sophie, combined with my grief over the birth process, amplified every little problem that happened during our hospital stay. I was distressed to the core and couldn’t cope with anything going wrong. Being a public hospital, husbands were not allowed to stay the night. But by now Frank was so damn sick of the treatment we’d been getting, and so upset with my distress, that he demanded to speak to the hospital administrator. It was about 3am but somehow the administrator was tracked down and Frank was given permission to come and sleep on the floor beside me. Thank god for that. Once Frank was there I felt safe. I felt like someone was on my side. I felt like the nurses wouldn’t dare mistreat me with him there. I felt like we would get through the next horrible few days until we could get the hell out of there and go home.

I received conflicting advice from every midwife in regards to how to go about feeding, how often to feed, how to get Sophie to latch. By the end of the stay I felt I couldn’t trust my mother’s instincts. I didn’t feel I could even judge how often to feed her. Should I wake her to feed ? Or leave her to sleep? The nurses and midwives insisted I should wake her every 3 hours, as she had been jaundiced and needed the fluids. The doula insisted I should let her sleep and feed when she wanted. Sophie wasn’t much help, as, unlike “neurotypical” babies, she only had one cry. She didn’t have different tones and noises for “hungry”, “cold”, tired”, “lonely” – just the one very high pitched wail.

By the next day, after only about 10 hours sleep in four days, I was starting to lose my grip. The doula suggested I should eat some placenta (which she had saved and frozen, as I intended to plant it under a tree). I had always thought that eating your placenta was something that crazy hippies did (I have a bit of the hippie in me, but not that much!). But at that point I would have eaten my right arm if I thought it would give me some respite. The doula dutifully shaved off some small pieces and placed them inside some avocado, suggesting I pretend it was sushi. I couldn’t bear the thought, but I was desperate. I swilled each mouthful down with a large swig of water. No chewing. Within 45 minutes I was relaxed, pleasantly light headed and very sleepy. Shortly after, I fell into my first peaceful sleep for days. I was a placenta eating convert!

During this whole period, I was dealing with growing concerns about the well-being of my child. From the day after Sophie was born I knew deep in my mother’s heart that something was wrong. To begin with it was something I couldn’t explain – I just thought she didn’t look quite right, and she didn’t feel quite right. I distinctly remember my family passing her around the room, and me looking on and thinking “there is something wrong with my baby”. The first icy twinges of fear closed around my heart. My fears were put down to an overreaction, as I was distraught about the birth and subsequent proceedings, and not coping well. But as the days passed I began to notice some physical differences. She didn’t have a grasp reflex, and no rooting reflex. She seemed floppy, and was having trouble breastfeeding. The doctors and midwives told me this was due to the drugs I had been given during the late part of my labour and the c-section. She had a simian crease, a sacral dimple, an umbilical hernia, and slight pectus excavatum (like a small “dint” in the center of her chest). One of her pupils looked bigger than the other. None of these things were noticed by the doctors. When I pointed them out, they brushed it off, and told me it wasn’t unusual for kids to have a few minor physical anomalies. Months later, when desperately searching for answers on the Internet, I was to discover that about 3% of the”normal’ population have one minor congenital anomaly, about 1% have two minor anomalies, and less than 1% have three or more. And that any baby with three or more minor anomalies should be considered as potentially having a genetic disorder…I’m not sure where those doctors went to medical school, but they must have missed out on that particular lecture.

All in all, my time in hospital was a pretty unhappy time. I just wanted to get out of there and back to the sanctuary of our home, where I thought things would improve. So three days after my c- section I discharged myself. I had imagined going home elated, thrilled with my newborn and full of the lovely bonding hormones of early motherhood. Instead I went home exhausted, in pain and feeling unheard and uneasy.   Pictures do lie!!! Or maybe not. There is a smile on my face, but you can possibly see the tiredness in my eyes….

 

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NEXT POST…FEEDING, SLEEPING, AND SEARCHING FOR ANSWERS

Sophie Rose

Sophie Rose. My beautiful four year old. My little ray of soul shine.

Sophie came to us with many things…purity, innocence, courage, wonder, curiosity, joy and lessons to teach.

She also came with a little something extra…Kabuki Syndrome and Aspergers.

I’ve been meaning to share our story for a long time, and for many reasons…to keep a record of our journey, to connect with other Mums who have children with special needs, to share our struggles and our triumphs, to perhaps give some hope to Mums out there on similar paths.

Enough dilly dallying…let’s get this thing started!