The feel good factor

When I made the decision to start blogging about my youngest daughter, I also made the decision to try and focus on the more light hearted side of things.  Having been a visitor to hell and back more times than I would care to remember in those early dark days, I wanted to put that part behind us and concentrate on how far the Dancing Queen has come.  And I guess also focus on how much she has taught me on the way.

However today I read the blog of a parent with a child with severe autism who was essentially saying that he was fed up with people sending him feel good stories about autism.  It’s not often that I come out swinging on this particular topic, but I must admit that the article rankled me.

Fairly early on along the parenthood route, I began to get a better understanding of that huge divide between woman with children and woman without which until then had seemed unfathomable.  Then I worked out there were equally significant chasms between working mothers and non working mothers, as well as mothers of single children and those that had multiple.  After that I worked out the gap (possibly the greatest of them all) between mothers with children that fall into society's "normal" parameters and those that have children with special needs of whatever description. 

What I would hate to think however, is that there also exists a vast partition depending on where your child falls on the spectrum.  I know without any doubt that we are one of the lucky ones and for that I am eternally grateful.  I have a beautiful and very special daughter who will be one of my greatest teachers. And yes sometimes when I read the really heart wrenching stories, I feel guilty.  The last thing I want to do is to rub it in anyone's face.  But at the same time, hope is our most valuable commodity.  We have come so far already, why can I not unashamedly believe that hope and complete faith in my child will help her go even further?

As a parent of a mildly autistic child, I know I have limited understanding of the heartache that parents raising children at the other end of the spectrum are going through.  But that's not to say that we are not without any of that pain. I have a seven old that hates her brain because she has already worked that it is different from her peers.  I am lucky that she is able to express her feelings but at the same time that in itself in this context represents a significant challenge, and as a mother it is one that pulls at every single heart string.

So for now I am going to continue to focus on the plus side of things to the best of my abilities.  And if I do offend or upset any parents out there, my apologies in advance because it will never be my intent to.  My hat is permanently off to all parents raising any child of any description. 

The Gingerbread Man - an adaptation

Today's recipe - take a supposedly harmless childhood character, the imagination of an autistic child, a small pinch of creativity, a range of sweet spices from a pantry foray and a large dose of patience (even if done while gritting one's teeth).

Sleep time is not the Dancing Queen's strong point and we have virtually worked through the entire excuse book as to why sleep is not necessary that particular night.  In some instances, she gets ten points for creativity, the Gingerbread Man one being a good case in point.  To most kids, the Gingerbread Man story is about a cute little baking product of a lonely elderly woman who eventually gets eaten after taunting half the local village.  Its a first reader book, something cute to make at Christmas and sometimes a treat at the local cafe/bakery.  End of story.  Not in this house.  The Gingerbread Man took on a life of its own and was apparently the source of nightmares for about two weeks. The latest fixation, he became the latest excuse for not going to sleep - if she did, she would be gobbled up by him as he loved sleeping children in particular.


We suggested all sorts of alternative endings to the dream - including pretending that she in fact was the fox and got to gobble him up but no, apparently he could regenerate all limbs, grow a new head etc.   After about two weeks of this, the story was wearing a bit thin.  So almost in exasperation, I raided the pantry.  The end result was a sweet smelling concoction of nutmeg, mixed spices, cinnamon, a bit of brown sugar etc - basically anything that could act as a sweet antidote to gingerbread (I did not elaborate what gingerbread was in fact made of).  This was placed in a small bowl right next to her bed and was to act as a magical deterrent to all maundering late night gingerbread men.  The next morning she proudly reported that the Gingerbread Man had taken one look at the magical potion and had run off as fast as he could (basically at the same speed as in the story).  The little bowl stayed in her room for nearly two weeks.

Last night, the Dancing Queen proudly handed back the Gingerbread Man antidote, telling me it was no longer required as he had moved to China.  Thank goodness for pantry staples and the ability to believe.

But it is still going to be a very long time before I let her watch the final scenes in the Ghostbusters movie where that giant marshmallow man wrecks havoc.

Follow the yellow brick road

Today is the book week parade at school, and the Dancing Queen has (nervously) skipped out the door with her new sparkly red shoes as Dorothy from The Wizard of Oz. We thought the choice of character appropriate on a number of different levels, not least of which is the fact that she has watched the movie at least a dozen times over the past week - which makes a nice change from Care Bears for starters. 

The other obvious point is the fact that Dorothy has all sorts of adventures in a magical land where she befriends various people/creatures along the way. For a child that has created an alternative reality (in a world we cannot reach) where she takes care of her 'shadow' family, again it seemed fitting.

The need for Dorothy to follow the Yellow Brick Road also managed to bring back memories which now bring a wry smile to my face.  At one point in time, one of the most challenging outings we could undertake (and only undertaken if absolutely necessary) was to a nearby shopping centre where the connecting pathways between the shops were tiled with geometric pavers in various colours/patterns.  The Dancing Queen would only walk on certain colours and if anyone had the audacity to get in the way of her walking in a completely straight line along one particular colour, then we had a problem.  Sometimes it would take us 20 to 30 minutes to walk to our destination at the other end of the mall and more often than not by the time we got there we were in meltdown mode. The other reason why this particular destination was so nightmarish from our point of view was that it had way too many exit points.  Meltdowns would often be followed by the dire need to escape, with the Dancing Queen attempting to make a mad dash out of the first available portal.  In most other shopping centres I had learnt to make it to 5 minutes before panicking wildly.  But with this one, the panic set in almost instantaneously.  We now live in a place with very few shopping malls.

Today however I told her that if she gets nervous, she could always click her red sparkle shoes and say "there is no place like home" and just imagine she is back somewhere safe.

But I am different.....

When I made the decision to finally start blogging, I also made the promise to myself that I would try to portray the lighter side of things.  You read so many heart wrenching stories when it comes to autistic children, I wanted to focus on the upside as much as possible.  I know we are one of the very lucky ones.  The Dancing Queen these days is a beautiful, happy child with this most amazing ability to reach other people. And on the whole, the good days thse days by far outweigh the bad days by factors. This is in stark contrast to those early dark days when the good days were very few and far between and the days seemed to merely alternate between bad days and pure hell days. Yet while the memories of those days are rapidly fading, I don't want to forget them altogether as they are also a wonderful reminder of how far we have come.

But at the same time, these days pose additional challenges where I am still very much at the bottom of the learning curve and some days I feel like am still floundering badly.  The Dancing Queen has been transformed from almost a non verbal child with a highly severe speech language impairment to one that does not stop talking, which of course is a sheer delight (most of the time).  However with the new ability to communicate has also come the ability to express her deepest thoughts and that is where I am starting to come unstuck again.  How much credence do you give to a switched on nearly 8 year old?  In so many ways she is wise beyond her years and you have the feeling that she has in fact been here before and actually knows far more than you do.  Yet in other ways she is still very much younger than her years.  Give her half a chance and she will still more than happily watch Maisy or Sesame Street, and cry if she does not get to see Iggle Piggle go to bed on The Night Garden.  So what do you say when she starts to sob about "how her brain does not work right"? and that "she is no good because she is different"???.  Even at age 7 3/4, all the usual parental reassurances in the world are no longer sufficient. I guess what I now need to figure out is when is the right time to start explaining autism, though given her ability to ask profound questions I think I had better go and read up some more about it first!

Literally.......

One of the things that amuses me is how the Dancing Queen translates everything literally.  And I do mean literally.  Which means all sayings and colloquialisms have to be used with extreme caution, including those that involve missing body parts (such as lost heads or cats stealing tongues etc). I have had many an incident (usually when tired) where I have used a common expression without thinking only for both of us to end up completely confused (though often amused) as she has taken what I have said at complete face value.  As the Fat Controller from Thomas the Tank Engine likes to say "I have caused confusion and delay". 

However what is causing slightly less amusement at the moment are the current advertisements for various Disneyland resorts around the world which have the banner "where dreams come true".  Again this is being taken at complete face value and I am forever finding the Dancing Queen on the computer trying to book a holiday to one just so all her dreams can come true. (I have given up trying to explain the power of false advertising).  She can even tell me all the different room features of the associated hotels and which Disneyland parks offer what (along of course with the obligatory dream promise).  She certainly scores ten points for trying - we had a rough week last week so last night she gave me the ever so convincing sell job that I should book us a holiday to the one in Hong Hong as she calls it (Hong Kong for everyone else), so I could get my wish of a return trip home and she could get all her dreams fulfilled just in time for her 8th birthday which would just be the best birthday present ever (ie two dreams for the price of one).  Even the fact that the video clips on the website of some of her favourite characters for that particular Disneyland were in Cantonese were not sufficient to dissuade her - but then why should they?  She is the child that used to watch Maisy in Swedish and Madeline in Spanish for hours without complaining.  Maybe dreams in her world are bilingual?  Either way, she is very good at telling me each morning what her dreams/wish list is, just in case I fulfill her dreams and act on the Disneyland resort webpages she has so kindly bookmarked on my computer for me.

Suitcases, sausages and sauce

The Dancing Queen is all very excited about the fact that she is off to New Zealand in six weeks time for a holiday.  She has proudly told me that she has in fact told the whole school how excited she is about her upcoming trip.  And I also know for a fact how excited she is because she tells me at least half a dozen times a day and sometimes three or four times in the same hour.  Word for word. And I must admit after the fourth time that day it is hard to find the right degree of enthusiasm. She also enthuses about bringing the date of the trip forward to tomorrow so she does not have to wait "hours" (again the time comprehension issue) and some days I also think that sounds a good idea as I am not sure how I am going to go with the same conversation for the next six weeks.

Along with the excitement about the upcoming trip is the need for her to pack her suitcase which at this point in time is staying firmly ensconced on the top shelf of an inaccessible cupboard.  Because if I allow her to pack it (and repack it and repack it and repack it) it means she will not be able to wear those particular clothes for the next six weeks which may create a few clothing shortage issues for starters.  I also have memories of her as a four year old trying to do a runner with a suitcase being dragged behind her down the street as she attempted to walk to the airport (less than 10 kms away from where we were living at the time) just because she wanted to go on a plane that day. And the scary thing is that if allowed, she would have walked all the way there (complete with her bob the builder pink suitcase and its broken wheels) and demanded to get on a plane.  So no suitcases allowed at this early stage.

Of course along with the incessant need to pack the suitcase is the need to figure out what is to go into the suitcase.  I am trying very hard to explain that New Zealand customs may take a dim view of some Australian foodgroups so the next line of (repeated) conversation is the fact that as soon as we get settled into my parents place in NZ we will go to the supermarket to stock up on RED sausages (she does not like the brown ones but will eat under protest if no red ones available), tomato sauce and shredded tasty cheese, all staple food groups in their own right (along with apples).   I would hate to calculate how many tonnes of cheerios and cheese has been washed down by gallons of tomato sauce over her life to date.  All I do know is that the rest of us in this household can not look at a red sausage without groaning and I am quite convinced my eldest daughter's current favourite foods of calamari and curry (not together) is in direct rebellion to sausage consumption.

So lets just hope the next six weeks flies by.

What's the time Mr Wolf?

This morning's question from the Dancing Queen as I was brushing my teeth and trying to get out the door for the school run was "Mummy, how old am I going to be when Daddy dies?".  Now given the circumstances, I must admit I did not give the question a proper answer. (In fact, I often go to bed at night feeling guilty for not giving her questions due consideration or the answers they probably deserve).

But what got me was the need for a definitive answer when in nearly every other circumstance she has no concept of time whatsoever. She was never the sort of child you could count down the number of sleeps to a significant event.  To her an hour represents eternity, so don’t even bother mentioning the concept of days or weeks while months are very much a no-go area.  She can even complain bitterly about a five minute time stretch. I used to joke that instant gratification was just too slow for my Dancing Queen.

Yet she loves numbers.  At age three she could hardly say the word "mummy" but she could count to 30 no problems.  So why the mental block when it comes to processing anything that can't be achieved instantaneously?

The other puzzling issue about her sense of timing issue is you just have no idea of when an event actually occurred.  Lots of her stories start with "last week, back back back when I was little....." by which time you are already scratching your head going "huh????"  The other night was a classic example.  On going to bed she was in tears about an issue her teacher had raised and very much wanted to help resolve a supposed problem.  However on going to the teacher the next morning, I actually found out that the conversation in question had taken place ten days earlier with the problem now well and truly resolved.  She just processes things at a very different speed to us so you are never exactly sure what has been absorbed let alone digested.  Saying that, I have learnt the hard way never to underestimate her processing abilities.

Sleep baby sleep!

Today's wake up call was at 4.53am.  Now that the Dancing Queen can read the time, she can tell me exactly what time she wakes me up.  That came on top of two earlier wake ups last night, though I did not bother to check the time of those.  Having left her just after 10pm, my brain did not want to calculate whether it got a 4 hour stretch of sleep or not. 

What always fascinates/perplexes me is how little sleep she requires.  And what sleep she does get, does not appear to be of the restful slumberland variety.  Sometimes I am not really joking when I say that the Dancing Queen does not have a off switch.  Even when is she is asleep, she is not in off mode. That over active brain off hers does not appear to shut down, and she will continue to have indepth conversations even when asleep, often with more than one person.  The body does not cease its relentless activities either - she kicks and turns all night and most nights can destroy the bed at least a few times. I feel sorry for the teddy bears that inhabit her room - they usually end up seeking refuge under the bed.

At the same time however, if she does ever fall into that deep deep sleep, I worry that she may be unwell as it is almost incredulous that she is so still.  The only other time she is that quiet and peaceful is just as she is about to drift into her own world.  In those instances, she does appear to shut everything down before she vacates this planet.  It then becomes a case of don't bother knocking, as nobody is home.  But once again, she appears happy and content in her own space so where possible we let her be. It would be nice to think she did actually achieve some downtime while absent in her alternative world.