I’ll have what she’s having

I think to be honest one of the main reasons I held off blogging for so long was that I did not want to come across as an over tired mum having a bit of a whinge.  I would also hate it when well meaning people would suggest that a good night’s sleep would make it all better and I would somehow miraculously wake up to a new version of reality.  My understanding of the exhaustion concept was stretched beyond any definition I would have previously ever been able to comprehend.  And to say I would fall into bed some nights completely and utterly mentally and physically exhausted would not be too much of an over statement.  Only for the first party time slot to kick in between 10 and 11 pm, just a few hours after spending an hour or so settling my dancing queen.  The next party would then start at 2 to 3am and if we were lucky the day would not start before 5.30am assuming we could somehow sneak in an extra hour of sleep somewhere.  Either way the nights (and days) passed by in some sluggish blur for much of the first seven years of my dancing queen’s life.

But to look at her now, you would not think she as once a sleep deprived child.  On a good day, she is one of those beautiful rays of sunshine.  She makes people smile and in this depressing and selfish world, that has to be one of the nicest gifts somebody could ever have.  Even as a small child, people would be drawn to her and it would always amaze me how people would go out of their way to give her something, whether it be a free cookie, baby cino etc or in more than one instance she was given a small toy by a complete elderly stranger.  And in return she would smile/make them smile.  She has the sort of smile that does more than just light up her face. She smiles with her whole body and I have found very few people immune to it.   She can even reach the gruffest old people, the type you think most small children would hide from.  Hang all your stereotypical assumptions that usually go with autism.  In my view, she is actually a great judge of character. 

I think one of the plus sides of autism is that she has created an alternative world in which she is safe, happy and secure, to use her words these days. This has to be a good thing to some degree.  I look at her with envy some days, thinking how wonderful it would be to have built such a secure cocoon with the ability to be impervious to all the other stuff out there.

First Mutterings

I am not sure why I have finally decided to get my act together and start something which has been on my to do list for too many years.  But after years of procrastination and false promises, I am finally ready to take the plunge - of course it is when I am supposed to be doing at least five other things but that I have found is one of the day to day consistencies of my life.  I am always supposed to be doing something else on that eternal list which grows in size and complexity by the day.

Anyway to get to the point, I was reading the postings of a parent of an autistic child last night and all of a sudden felt inspired to start my own. As is the case with everything and everybody, every autistic child is different. My eldest daugther likes to joke that her little sister is in fact the left product of an alien spaceship because she is THAT different.  And without a doubt, my youngest child (to be known as the dancing queen)  is unique.  But that's what makes her who she is and thats what makes her so special.  Whatever her official label maybe, she has the individuality and life force of 10 people combined and I would not have her any other way.

Saying that however, I freely admit that even three to four years ago I had grave doubts that both of us would survive to celebrate her fifth birthday. There were weeks and even months when that long black tunnel did not even have a flicker of light beckoning at the end of it.  But both of us have done more than survive and she is now busy planning her 8th birthday party.  She is now unrecognisable from the angry, uncommunicative child that she once was and is in fact now one of the happiest people I know with a genuine love for life, and no off switch. In her view, life is too interesting to waste which still includes the need for no sleep - again that is a waste of time which could be spent enjoying something else.  And along the way, she has taught me so much.  She may still be my greatest challenge, but without a doubt she is also one of my greatest rewards.

And so I thought I would start this.  In between the meltdowns (which are now far less phsyical but are actually far more complex), there are ever increasing moments of pure joy.  So this is for anyone else also enjoying the challenges and rewards of raising a child not deemed to fall within the traditionally defined paramaters of expected social behaviour or for anyone interested in reading about the additional complexities associated with an autistic child.   One of the things I love most about my dancing queen is the fact she will always keep me guessing and seven times out of ten will make me laugh, even if it is often a case of "what the...."?.