Random

If I was asked for a few words with which to describe my youngest daughter the word random would crop up within the first 10 seconds. As an analyst by profession, I like things to be ordered, structured and logical.  As such I often struggle to comprehend her apparent line of thinking.  To me, her tenuous connections to topics of conversations, people or events often appear random at best, and more often than not, irrational or illogical. I am often left scratching my head with a matching blank look of incomprehension as I struggle to work out how on her earth her response vaguely matches the scenario on hand.

But what I am slowly discovering is that it is the limitations of my own brain and static ways of processing that result in me dismissing her as random.  Her mind processing powers are actually light years ahead of mine in terms of speed, dexterity and essentially general evolution.

For starters, she probably likes logic and sequences more than I do.  As a small child, everything had to be structured and organised to the nth degree. Even then, her abilities to think through a problem and work out a logical solution would amaze me even if she did visit every letter of the alphabet when trying to come up with an answer that in my view simply involved working from a to b. Yet her answer because she could factor in so many additional variables, could actually be interpreted as being far more in-depth and intelligent than my limited view.

I used to joke that my daughter's early development was often a case of one step forwards, two steps backwards with a few random steps to the side just for good measure. Little was I to know that that strange dance would be a consistent feature of our lives.  Every action, event or interaction today has that few extra steps, along with back flips, somersaults and on good days, a bit of hip hop thrown in too.

As the years pass, I am slowly learning to interpret my daughter's actions and reactions.  However when it comes to trying to understand her thought processes, it is me on the left foot, always a few steps behind, and usually with that strange look of incomprehension or bemusement.  I am however hoping that in time her randomness will seem more logical and more understandable within the limitations and confines of my own thought patterns.

I'm different, not crazy

There was an interesting scenario at the dinner table last night.  In response to some silly comment directed towards her, the Dancing Queen turned around and very succinctly replied with  "I am not crazy, I am different". There was no hint of questioning as to why she may consider herself different.  It was just said as a matter of fact with almost complete acceptance.  As an aside, I am not sure as to why this may be, given that just a few months ago her perceived differences were all too apparent to her as much as an 8 1/2 year old can comprehend.  But she certainly seems in a far happier, and more settled and accepting space at the moment and as a result is flourishing.

However what made it even more interesting was the backlash that comment invoked from her 11 year old sibling.  I guess as a parent I have come to terms with the fact that the Dancing Queen will always be considered a "bit different" and frankly when it comes down to it, I would not have her any other way.  But to an elder sibling, her sister's "differences" are in her face on a daily basis for all the world, including her school peers, to see.  And in response to that one innocently made observation, out came a torrent of hurt and anger as my 11 year old daughter expressed her resentment towards her sister.  However again what made it interesting was her view that her sister not only hid behind the "different" label when convenient, but used it to her full advantage.

And I guess again as a parent, I have to accept the fact that there is also truth behind that comment too.  My eldest daughter is an amazing girl who is rapidly growing up to be a smart, sensitive and very perceptive young lady.  She has shouldered far more responsibility than most kids her age and is wise beyond her years, even when her pre-teen hormones play havoc with her usually kind disposition. I could not ask for a better eldest daughter, nor could the Dancing Queen get a better elder sister. And much of her superficial resentment is justified to some extent or another.  She is all too aware of the fact that her sister's behaviour plays some role in influencing most family decisions, trivial or otherwise.  So while she may have the maturity beyond her years to accept this in most instances, she does not always have the necessary understanding to do so and when it comes down to it, why should she at just 11?


So where does that leave the juggling act that is required to properly nurture both a child on the spectrum and a neurotypical child so that both feel fully accepted for who they are? The "a" word is not frequently used in this household because we try to treat both girls as the remarkable individuals they are without the need for labels either way.  Yet obviously the apparent differences are never far from beneath the surface. And I guess the lesson to be learnt from last's night exchange is to make sure that with the need for acceptance of the most obvious differences does not come manipulation, from any party, sibling or parent.

Fear - and lack of

At the back of my mind while writing this post are the horrific tragedies of the three young autistic children in the US that drowned in separate incidences last week.  No parent should ever have to suffer that pain, but in the case of parents of autistic children it must count as the realisation of one of the worst nightmares possible and my heart goes out to the three families involved.

Even before my daughter was formally diagnosed and before I was aware of fancy terms such as elopement, I did become aware of what could happen if you diverted your attention for a split second.  And that’s all it would take for my daughter to disappear.  If we were out in a noisy, over stimulating environment her natural reaction would be to escape it and she would bolt.

But in other instances it would be less reactive and more "calculated".  If she was fixated on something, then she would attempt to follow that through by whatever means possible. That has included dragging chairs from one end of the house to the other and then down a flight of external stairs in order to reach the pool gate latch in order to leave the house, all the time also dragging a suitcase because she had in her mind she wanted to go on a plane that day.  The next step of the plan would have involved walking to the airport (about 10 kms away), still dragging that suitcase and she would have done it (if not thwarted) because she was determined to do so.  She was under the age of five at the time.

In her case, water has become her friend.  As a toddler, a bath would help restore her after a meltdown.  Today baths are almost a preventative measure.  She often elects to take herself off for one when stressed or after we have been on an outing as if she is attempting to wash away any sensory overload vibes. She can spend hours in one, floating away three quarters submerged, completely oblivious to the world.

However outside the safety of the house, water also has a magnetic attraction for her and in these instances my fears kick in.  She has come along so much over the past four years sometimes I wonder if I am being too over protective and should actually loosen the reins a bit more.  But while she has learnt to recognise and express her emotions and develop some fears (darkness, death etc), she has not learnt to recognise danger.  So while I can let her play in the safety of a big back garden behind high walls, still hold her hand whenever we are out together, and monitor to some extent every external scenario for potential meltdown triggers, I have yet to work out how to teach her to recognise danger.  You can point out traffic and stranger dangers etc until you are blue in the face and she can happily rote learn and parrot back what you have said, but I have yet to be convinced they have actually penetrated the bubble which encases the world in which she lives.

It also sits oddly with me that you need to teach a child to "fear" in these instances as a necessary life skill. At the same time, I have yet to work out the line between being brave and being oblivious.   I have however, learnt a new definition of fear since my daughters came into my life - the fear of losing them.  This is why the loss of those three autistic children last week has rekindled my concerns with regards to my daughter’s apparent lack of fear. 

However as much as I would love to fully wrap her up in cotton wool and add a few more protective layers to her bubble, I also know it’s not enough.  As with every other child she deserves the freedom to grow and develop in her own right without me bubble wrapping her to the nth degree. That I do know.  What I don't know is how to achieve it when she is so more vulnerable than the average child, even as only mildly autistic.