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.

Stuck in the spin cycle

On the few occasions when my 10 year daughter has asked why her younger sibling is "different" I have tried to give her the somewhat simplistic explanation that the Dancing Queen is just wired a bit differently with some of the wires doing a few extra loops.  I also try to explain it in terms of a computer with her central processing unit being a slightly different model.

And in the lead up to her first school "sleepover" at the end of this week, that extra looping is evident. Particular conversations and the need for reassurance are currently on the repeat cycle with the last (and same) conversation each night being taken up word for word as the first conversation on waking the next morning. 

For some unknown reason, I was lying awake at 5 this morning thinking about those extra loops.  I have learnt at my peril not to underestimate the strength of those loops and while their size and frequency may vary with the occasion on hand, they are very much part of her processing abilities and help define who she is.  While some days I still feel like banging my head against that almost ever present brick wall, because I have yet to fathom how her brain works, I am coming to the realisation that her brain is actually far more advanced than mine. Even if it were not its usual muddled, sleep deprived state, my brain does not have the necessary speed to process all the extra variables she adds into the standard equation. She adds tangents I did not know even existed, let alone would have considered central to the actual answer. And all of these extra variables are then spun around at great speed on that loop cycle until she is ready to process them whether it be later that day, that week or even that month.

Following in my daughter’s footsteps, my mind then did a few loops and sprang back to the days before she was formally diagnosed.  She is the type of child that if you put her in a room with three specialists, you will get five opinions.  The only diagnosis however that I have refused to accept for her is that she is intellectually impaired.  At one point when I was applying for a place for her at a special education development unit on the grounds of severe speech language impairment, I found out that her application had been changed without my knowledge to one on the basis of intellectual impairment.  I think that was one of the few occasions that I did come out of my corner swinging.

Yes, I freely admit to be being a biased and protective mother but I know in my heart of hearts that just because she appears to have a different processing capacity, it does not mean that her capabilities are any less. Even if we do have days when an analogy with a washing machine stuck in the spin cycle appears to be more apt than one with her as a computer.

Shadowlands

I came across a facebook posting this morning which intrigued me.  It was promoting a book written by a young adult autistic male about living in two worlds, the second one being make believe.  It is something I have yet to research but something I possibly well should given my daughter's tendency to drift between our world and the one we call her shadow world. Just last night she was using an event in her shadow world to argue the case for not going to bed.

Nine times out of ten, I don't have any cause for complaint about her alternative reality.  She can spend many happy hours with her shadow family which she has created.  In this world, she is the nurturing mother figure in charge of a growing number of orphan shadow children which appear to be "misfits" as defined by normal conventional society.  They all have names and very distinctive personalities and it is fascinating to watch her have multiple conversations with them when in the real world you often have the feeling you are talking to a brick wall when trying to engage her in a simple one on one conversation.

And on the whole, we have successfully established the necessary ground rules.  The shadows go to their own shadow school to avoid any classroom/playground issues and also have their own means of transport.  This last rule was established after I was forced to stop the car during a meltdown and then turn back to the last destination to fetch one after inadvertently leaving her behind at the local shopping mall.

I have also found that by quietly listening in on her conversations with her shadows I can gain some insight into what is actually going on her brain and on a number of occasions have been quietly thrilled to find that she has actually absorbed far more than what I would have initially given her credit for.

However every so often she struggles to tell the difference between the real world and her shadow world and can't make the distinction between the two.   Events in shadowland can spill over into this world and she can't appear to see that they are not "real".  A death or departure of a shadow family member can be devastating for her with real heartfelt emotions occurring for a number of hours even though the event itself was her own creation and obviously not real.  Her shadow family is also used to take the blame for incidences that occur in the real world i.e. it was a particular shadow family member that was responsible for over flowing the bath yet again etc and she will swear black and blue that was the case.

So I guess I was relieved to find that this make believe world is not in fact uncommon among autistic children and is in fact used as a coping mechanism.  I also know which book I need to read next.