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.

The Power of a Simple Smile

I have not written anything for a while so thought it time to try again. But when I was scrounging around in the back of my mind trying to think of an appropriate topic to write on, the only one consistent thought that kept popping into the forefront was my youngest daughter's smile.

As I have said before, the Dancing Queen has this most amazing smile.  Not only does it light up her face, but its almost like her whole entire being smiles. It then radiates from her and its almost impossible not to feel it.  She generates that warm, fuzzy feeling that can almost penetrate even the hardened exteriors of some of society's gruffest elements.  And because she does not know fear of people, she happily smiles to the world and to date I have found few people that can resist her.

Which also applies to me on those days when my head hurts from having the same conversation 26 times, usually while I am trying to do something else, or I have had to ask her to do one simple thing seven times in the space of 10 minutes etc as we try to get out the door for school.  But even if it is through gritted teeth or as I am banging my head against my favourite brick wall out of frustration because I can not understand where she is coming from, she can still make me smile.   Three of my most favourite highlights of the day are the first smile of the morning when she comes to say good morning, the one you get at school pickup or as she comes through the door after being away for a few hours and the one she generates from me when I check on her on last time before I go to sleep.  For all her extra energy and her dishevelled, disorganised state of sleep often upside down and hard against the wall, she still looks angelic.  And she makes me smile from somewhere deep down in me I did not know existed until she came into my life.

So I am hoping that this New Year will be another year of smiles, from both of us.  And that those smiles will help us get through the meltdowns, the stresses and the anxieties and all those extra little challenges that are part and parcel of her life.

Internal intricacies and a loss of confidence

It has been one of those weeks where I have seriously questioned how the traditional workings of my usual thought processes are supposed to read/process/handle thought patterns on what appears to be entirely different wave lengths.  Suddenly being just a caring, patient and sympathetic mother wanting the utmost best for her child is not enough to equip me when I am questioning whether I even have the right degree of empathy. I joke about brick walls but maybe its actually my mind that has just hit one because I am suddenly frustrated that I can't understand the internal intricacies of how my daughter's mind work beyond the most basic, superficial level.  How can you be someone's biggest advocate when you don't even understand where they are coming from?

I have learnt how to reach her and she has so kindly let me into her world for which I will be forever grateful but those brick walls are still growing higher.  I feel a complete stranger in her world because the parameters are too abstract for me to comprehend at this point in time. 

All of these feelings of helplessness were sparked by a very small incident at school this week. But even though it was minor to the class and teacher, it was not to the Dancing Queen who re-lived it for nearly 24 hours as she had mis-interpreted the severity of it all and as a result chose to punish herself to a far greater degree than what the incident warranted. 

Maybe its only now that I am beginning to comprehend what autism actually involves.  I know that may sound stupid and ignorant, but in those initial years I think maybe I was more caught up in dealing with the physical side of things.  Initially as a non verbal child, she was a very angry and frustrated one and day to day life came down to surviving the constant meltdowns and her need to run from anything that disturbed her.  These days she can talk and I have become a master of monitoring and evaluating all environments and external stimuli as a potential trigger so life is far less stressful on that particular front.

However I now suspect that I am still in fact still at the bottom of that ever increasingly steep learning curve and while I somehow managed to protect myself from comprehending the full implications of what an autism diagnosis entails, reality is about to give me another sharp lesson.