The Trouble with Labels

...Is that they paint a very condensed, incomplete and judgmental picture in a person's mind.  They automatically turn a description of a genuine issue into something that is easily tick-boxed and canned and think they know everything about it because they've heard the term before.  I never knew much about Aspergers, despite one of my best friends son's being diagnosed years ago, I didn't take the time to learn much more than what the front pages of a few websites say, which is mostly the same bulleted list of traits. And I didn't understand how she struggled with him.  There are times when I even said to her 'My kid does that, it has nothing to do with ASC, it's just the age - she's exactly the same' - a few years later, my palm hit my face in spectacular 'well, aren't you a dumb-ass' style.

It was October 2011, and the kid was just turned 7 when I started reading about Aspergers, it was because I had applied to go back to Uni, and was looking at Auditory Processing Disorder on my supervisors advice.  I vaguely paid attention to the information thinking of my friends little boy and starting to understand a little better why he was the way he was.  Then I read an excerpt from a mother about her son: "I couldn't understand why it was that my son could be so intelligent and talk non-stop about the universe, but can't stop climbing over furniture in public places".  Not even two weeks before having read that, I had been on the beach with the Kid and family, in a pub having lunch where the Kid had been spiralling on about space, the universe and planets, whilst climbing over the banisters in the pub, and my brother snapped almost word for word the same excerpt. It hit me that for the first time ever, I had read something in a text book on child development and my daughter actually fitted.

I thought back to having studied Early Childhood Studies and Linguistics when the Kid was between three and five years old - the ideal age for observations, sample drawings, analysing their early writing, social development, play, learning...and how much it p*ssed me off that I couldn't use her for my studies because she just didn't *do* what she was expected to do and that age and what was expected of me in my essays backed by the literature - I just couldn't blag it.  And it equally annoyed my friends as they soon realised that they couldn't use my kid easily for that. She just never 'fitted' those boxes, she just didn't *do* those 'normal' things that I was reading and learning about.  She didn't actively seek out friendships, or role-play, or say 'let's play...' as is apparently very typical for little girls.  She didn't start forming random pencil marks onto paper and saying they were a word at 3-4 years old.  She was writing her name and simple words. She didn't get the baby dolls out and pretend to feed them, or carry them or play mummies and daddies.  She was happy sitting in the corner reading to herself quietly, or working out how things worked, or drawing.  Her nursery even once asked me if I took her to Art classes because her drawings were exceptional for her age.  My response as a full-time student, part-time working and very single mother was 'are you freakin' kidding me? Where have I got time for that?!'. But I never thought anything of it.  The kid was simply the way she was, she was perfectly happy being the way she was, she hung out with my friends and I and conversed with us,  and I wasn't worried about her. She still had some raging toddler tantrums, I figured that was just childhood - I'd never been a parent before, I didn't know any different, kids are difficult, I figured she was just difficult at times like any other kid.

But those 'tantrums' are what I now know to be meltdowns, that she never 'grew out of' as I expected her to. And when she hit 7 - she went bang. Totally. You see, the start of year 2, and her teacher was the SenCo.  I thought that it was brilliant because she would be  just the right person to talk to. And I asked if the kid could be seen by the Educational Psychologist, or School Nurse or whoever, because I suspect she has Aspergers.  Her teacher's response was that she saw no reason to have to do so, there were no signs of Asperger's in the kid, that there are usually severe behavioural problems associated with it.  I pointed out that the kid had a totally different personality at home to the introverted, incredibly shy little ghost of a girl she saw at school.  But because the 'kids with those issues are disruptive to class' and the kid just hardly noticeable at all. The teacher ended our conversation with 'I've taught children with Aspergers' before so I would know'.  Out of nowhere, I replied 'how many of them were girls?'.  I hadn't even thought until that point that they would be so different to identify.

I went home and that night Googled Asperger's in Girls, and had another look at the list of Gifted and Talented traits, both socially and academically.  Two things hit me - how similar the two lists of traits were, and how little information there was about girls with Asperger's compared to almost everything else which *exclusively* spoke of male traits.  Although there was usually a mention as to the 1:4 female: male ratio and a question mark over why 'boys are more likely than girls to have autism' - it occurred to me that the girls might just be being missed - slipping through the radar because they were so quiet and shy, and so totally not disruptive in class - a teacher spends more energy on the kids that command the attention.  The kid just coasted along quietly in the back.  There was a huge amount of information on ASC, Asperger's, some of it scholarly articles, some total crap.  I couldn't take it all in to understand how to 'stop the kid being the way she is and go back to normal'.  Somewhere around then, I forgot about studying for Uni, and my reading lost it's academic priority - I needed to learn how to parent this kid.

But over the next term, her moods at home deteriorated massively, she became quite incredibly unmanageable. We spent day after day at loggerheads, usually shouting, crying, arguing over something ridiculous, going around in circles.  She was amazingly rude, arrogant, argumentative, stubborn, over reacted to everything, was constantly on edge and just impossible to talk to.  I dreaded every day picking her up from school and the futile effort of trying not to let it end in arguments.  Her academic levels were suddenly decidedly average and she just stopped bothering to produce what she was capable of.  Again, I went to speak to her teacher and asked for an assessment, for something to help me, because I couldn't cope with her at home, and I could see the direct impact school was having on her.  She reluctantly agreed, although made it clear that the kid was in no way a priority and that she thought the kid was nothing more than a bit bright, but there were plenty of others with higher levels than her.  I didn't give a toss.  All I knew was that my daughter's smile was gone, my funny, witty, clever little weirdo, and that I had a raging little girl, who was over-emotional and volatile.  I was ready to walk, quite frankly.  I know I never would, and that like it or not, I'm the constant in her life, no matter what she throws at me, I'm the only one that would stick it. But that's how I felt, day in day out.  What I later learnt was that her anxiety levels had hit an all time high, and she was a ticking time bomb constantly.  And that the anxiety she held onto for six hours straight at school, she unleashed on me as her rock that could seemingly just take it all.

Well let's just say that the Senco didn't make getting the ball rolling with an assessment easy.  She told me meetings were cancelled (when I knew they hadn't been), gave me a false date of the next meeting, so my consent slip wasn't in on time, she, quite frankly, bullied the kid all the way through year two - and the kid suffered emotionally and academically and struggled the whole year through.  The headteacher, needless to say, got a long letter at the end of the year, and the teacher's misconduct was reprimanded (she's been very careful around me since).  By the end of year two (literally the last two weeks), I was given an appointment to speak to the school nurse, and I finally had a chance to tell someone about the kid, her traits, the weird things she does, her behaviour, the things that concerned me...and the school nurse agreed that a referral to the Pediatrician for an initial 'Social Communication Disorder' was needed.  She requested a questionnaire from the kid's teacher which was to be sent to the Pediatrician along withe the school nurses thoughts on how I described the kid.  And I thought - 'huzzah!  FINALLY someone's taking me seriously'.  But the appointment with the Pediatrician wouldn't come for at least two months.

That feeling of finally being listened to was amazing, I didn't feel like I was trying to convince myself, or I was being paranoid, or causing a fuss over nothing.  I had bit the bullet, swallowed my single-parent-tiger-hard-as-nails-pride, and admitted I needed help.  It took nine months from first raising my concerns to getting a referral for an initial assessment.  And I felt a little like I had won a small battle.

What I didn't know was that it was just the start (two years and almost at the top of the waiting list now!) of dealing with professionals in child services who just didn't listen to what I said, who judged the kid on a single meeting with her, who wrote false information in their reports, who just didn't didn't understand the tightly intertwined idiosyncratic qualities that made this kid. And NOT ONE single professional in these services who actually HELPED us when we needed it the most. All she was to them was paperwork.  A name and date of birth, who didn't fit the male-orientated label that Asperger's conjured in their minds.

When the kid was in year three, she acquired who can only be described an AMAZING teacher who took on board what I said, doubted me at first, but observed the kid closely, and LEARNT about girls with Aspergers and encouraged me to do the same in order to support the kid as best we could between us.  She deserves a post of her own another time.  Because really, she has been the saving light in a long list of names with titles who have done their job of ticking boxes and signing letters.

So the trouble with labels?  They instantly make people think of a certain few things that identify a person with that label.  But it means that people often don't feel a need to know anymore about it - the token few bits of information is enough.  But when that in itself is true for professional and presents a barrier to identification, it becomes more dangerous than ignorant.  They also annoy the hell out of Aspie's due to their itchy/prickly/sharp nature of phenomenal proportions :P

The RollerCoaster Girl

Here lies the new blog of a frazzled, exhausted and constantly walking on eggshells type of mother with a chaotic, hyper-emotional, nuclear bomb of a wonderful 9 and 3/4 year old daughter who simultaneously amazes and confounds me.  You see - the kid (she does have a name, I do use it, but online, she's the kid) is currently waiting on assessments to confirm what I suspect - that she has Asperger's.  We don't yet have an official diagnosis, so I can't say she does. In my heart of hearts though - the Aspie/ASC label only puts onto paper what I have always known - all those funny little quirks that made her stand out just a little bit. From such a tiny little age - she was just weird.  Brilliantly so.  But weird nonetheless.

And being someone who spent the first five years of the Kid's life or so working in various playgroups, nurseries, studying Early Childhood...it frustrates me that I never saw those quirks as signs a lot sooner.  If I had have done, maybe she wouldn't have hit such an emotional state.  If I had known about Asperger's sooner (other than knowing it was a thing that meant some children, usually boys were good at maths and a bit geeky), if I had any idea at all of what it was about, we could have managed things differently.  But I didn't, and emotional wreck she was for a very long time. I guess this blog will act as some sort of record of the trials and tribulations of her experience and mine.  I hope eventually that she will contribute to it and take some sort of pride in bringing the Aspie out of the closet - quite literally ;)

I feel sometimes that we travel through long dark tunnels of stress, which seem to last for weeks or months before finally seeing a light, which is then so bright and blinding that it shines with all it's glorious might, and burns out in moments.  But how worth it those blinding moments are.  For all the efforts, the consistent, constant trying, the feeling like every day is me and the kid are alternating between that rock and that hard place (usually her pet Rock called Welky and the hard place being her stubborness), that moment of *finally* breaking through and knowing that it was worth it.  See - I'm only just really learning how to cope and manage the Kid, and in turn, trying to demonstrate/encourage/teach her to be able to understand and manage her self, herself. 

So let me bring you up to speed.  She never really showed any developmental delays or issues - other than not uttering anything more than a single "Idiots" towards myself and her dad at 10 months old until she was 21 months old and finally started talking, then she just didn't look back.  I was never worried about her not talking, she understood so much from being just a baby - it was said to me by a number of people that she had an old soul behind her eyes, she never wanted for anything other than to be wrapped up safe and understand what was going on.  I guess nine years later, nothing has really changed in that department...She was always pretty shy, and preferred to have just one or two close friends or play on her own.  She was most happy in adult company, and her dad and I being Uni students until she was five, meant that she did spend a lot of time hanging out in adult company, surrounded by philosophy, psychology, sociology, linguistics related literature.

Before the age of 18 months, she would spend hours, yes HOURS a day flicking through picture books, cover to cover, over and over again.  She would go through her whole shelf, one by one, and then start all over again when she got to the end of the last book.  How we laughed when any visitors thought it was cute that she would bring them a book to read to her... little did they know what they had let themselves in for...one book would turn into armfuls, sweetly dumped in their laps as she firmly took up her reading position.

(Insert about two years of family breakdown between the ages of three and five and no contact with her father after the age of four - another post for another day).

At five years old she started primary school and that's when the trouble really started.  All those quirks of hers, that personality that so far had for the most part been so influenced by myself and her father, that was proud to be clever, that took it upon herself to learn things far beyond what you expect a young child to even consider was suddenly something for her to hide, be ashamed of, to not let anyone see - well, that's what I thought at the time anyway.  She very quickly developed a number of issues which took years to understand and start to get on top of.  Night Terrors, bed wetting, temper tantrums, repetitive arguments, general increase in attitude and decrease in respect (yes, you may cringe to hear it described like that, but that's how it seemed at the time, I have a better understanding now and will revisit those terms another time).

At seven years old, end of year one and her report boasted 100% in marks and effort across all areas and subjects.  It didn't seem unusual to me - her dad was like that with academia, anything less was a worldwide disaster in his mind.  An old acquaintance who's daughter was similar, suggested I take a look at the National Association for Gifted Children (NAGC) who are now Potential Plus UK.  So I did.  I paid the nominal fee to do an online test with them, thinking "Right, well, how easily am I going to be duped into thinking that my kid is one of these genius kids and pay for some membership for a few leaflets".  She came out with an 84% ranking, placing her in the top 5% among her peer age group.  Then I started thinking back over her Dad's childhood and academic life - he finished Uni with an Upper First Class Honors, something less than 5% of students achieve.  I started reading about GnT kids, I started seeing the similarities.  But it still didn't explain a lot of the 'problems' that we had.  So she was bright, that's great.  We didn't have the usual struggles of encouraging her to do homework, to read, to try and pick up a pen and write - she did it all herself. Cool - most parents can only dream of a kid that was apparently *so easy*. But she was far from.

Just before she turned seven, we went to our favourite hideaway, camping for ten days in a community where time, structure and routine exist in a very loose format.  It was our place to have fun, be free, let go, for her to reset herself and forget about all that academic stuff - enjoy some music, dancing, creativity, running around all day barefoot in a field with other children.  But for her, it caused a meltdown which finally made it clear to me, things weren't as straight forward as they seemed, that I needed help with her and she needed help to just 'be'.  What caused the meltdown?  Well, at the time it was in the disco, with loud music, lights, lots of people dancing (retrospectively I see things differently).  The kid never really varied her dance moves - she had one.  Spinning. She span and span and span for years.  Until that night, when she was aware that no-one else was.  Her argument? "I don't know how to dance.  I don't know what they are all dancing and how to do it like that!".  There was just no explaining to her that it was just random, free, drunken dancing, there were no moves, no set style or routine, it was just however you want to move your body at all.  She freaked, I ended up carrying her out like a log on my hip to the safety of our quiet camp, where she attempted to kick someone's chair into the fire.  We yelled at each other, she screamed, I cried.  I sent her to the tent to sleep and we left it in a horrible, stressed, emotionally charged and negative way.  I spent the rest of the evening coping to terms with knowing that upon our return, we needed help.

The start of year 2 and her eight birthday, and her new teacher was the Senco.  And so began the most stressful start to even having my concerns acknowledged and the phase to which I am hopefully coming to an end to soon.  It's taken 2 and 3/4 years to get from asking to speak to someone about assessments, to being near the top of the waiting list. And one huge dive on the rollercoaster that felt like it was never going to climb again.

Oh and why do I call her the RollerCoaster Girl?  When she was a toddler (and even now) she adored Gwen Stefani, one of her songs being called 'The Real Thing'.  One particular part of the song always seemed like it was written for the Kid:

 "I never know what will come next, so emotional, you're so complex. A rollercoaster built to crash, but I still love to have you around".

The Real Thing - listen to it here x