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. 

Only a matter of time

I guess it was only a matter of time before we had to deal with the issue of hurt arising from a child telling the Dancing Queen that she has a disability.  Though to be brutally honest, I think the hurt is more on my side at this precise point of time.  My daughter is more concerned with the fact that her peers think she is a baby.  She would not even know what the word "disability" meant.

Also if being honest, it is actually hard to argue the "baby" label.  Relative to her peers, she is very young.  Her tastes in terms of toys, DVDs watched, books read etc certainly do lag her peers and are possibly more in tune with those of a pre-schooler.  This at age eight is becoming more obvious. So realistically, I can't get too upset on that score.  Her current loss of confidence is also causing her to regress slightly so she is returning to her comfort zone which again resembles that of a younger child.  She is currently watching Miffy and friends while I write this.  Again no real case to defend.

But with regards to the other accusation, my blood levels are still simmering.  It takes a lot to get me upset these days, but I guess this is one topic that makes me see red. I know that in terms of official/government definitions she is classed as a child with a disability, and that I can reluctantly accept.  Society is intent on making sure that its "different" members have their appropriate labels so that even the round pegs can be slotted into the right holes even if those holes are not necessarily squared shape. That I can all somehow accept because there is little I can do to alter that inherent and impersonal need for pigeon holing.

However this is the first time I have had to come to grips with the fact that people in her day to day life may perceive her to have a disability.  In our eyes, she is who she is, end of story.  She is one of the most beautiful children/persons I have ever had to the pleasure to know and I would not have her any other way.  I would not change any of her quirks or her idiosyncrasies even if she has interrupted me at least 20 times so far while I have tried to write this to the point I have lost count of the number of times I have lost my train of thought.

So I guess it has really hit home for the first time while so many autistic people and their families campaign for acceptance.  I fully accept that the hurt arising from this particular instance is my problem.  Thankfully my child is not hurting from it so I know I should drop it.  However I am now even more conscious of the need for acceptance, so I guess that’s where I should be re-directing my energies because again it will only be a matter of time before the Dancing Queen understands exactly what is being said.  And I don't want her hurting from the lack of understanding that still goes hand in hand with an autism diagnosis.

I should also be conscious of and grateful for the fact that is in fact the first real instance of having to deal with this scenario.  So a big thank you  to everyone that is part of her life and who love and accept her for who she is.  A little girl with a huge smile and an ever bigger heart.