…Alice had not a moment to think about stopping herself before she found herself falling down a very deep well.
Either the well was very deep, or she fell very slowly, for she had plenty of time as she went down to look about her and to wonder what was going to happen next. First, she tried to look down and make out what she was coming to….
Alice’s Adventures in Wonderland – Lewis Carroll
When presented with a gaping, dark, opening to a tunnel, I’m reasonably sure most of us stop….
if not physically, then mentally….and contemplate a number of possibilities before entering.
The only place we can fall into darkness, without contemplating any potential is in sleep (as did Alice) and even then, some of us have difficulty resigning ourselves to falling into that darkness.
I sometimes imagine myself wading through liquid black velvet, wondering at the endlessness of it. Sometimes, it’s a fearful instant, I can’t go forward….sometimes it’s a sensation of enveloping resignation and sometimes something within me galvanises, to push forward.
Whichever, it’s always a moment of confrontation.
“You’re child’s different.”
“We think your child is….”
Confronting.
This wasn’t the tunnel…this was directing me toward the tunnel.
Shock. Confusion. Denial….
Denial holds us at the ‘doorway’ of the tunnel.
What comes next, really depends on what you have been given before to move forward with.
There are those that say, “Don’t live in the past.”
I have to agree, not much good comes from regret, or fear, based on the past we were given and formed.
But when it’s said, quite often a disjunction occurs.
Disjunction?….nice word, huh?
dis·junc·tion noun \dis-ˈjəŋ(k)-shən\
: a lack of connection between things that are related or should be connected
Merriam-Webster Dictionary
http://www.merriam-webster.com/dictionary/disjunction
[I will interject occasionally with little asides, it’s the nature of my mind to do so. I’m a person who appreciates little details. For those who don’t…annoying interruptions.]
In my past, “Don’t live in the past” had an authoritative implication: “Forget about it, move on.”
This effectively denies the meaning of learning, for in every past there are mistakes and learning.
At the time it was suggested Felix might be Asperger, I was a single mum.
My marriage breakdown was a devastating blow. Worse the realisation that my ex-husband had stopped having faith in the marriage, long before he told me it was over. In the breakdown of my marriage, for the first time I sought counselling. It was necessary….I was on my own – no family support (my mother was working overseas, my father lived too far away) and no friends (I had left them all behind when we had moved from Sydney). The friends we had made in the short time we had lived here, understandably, were unable to help. The pain of the loss of my marriage, our planned future and the beginnings of a family I had waited and longed for, was debilitating. Over time I moved from grief stricken shock, to disbelief, to anger and then resignation. In resignation is the possibility for change. Without counselling resignation is your enemy. With good counselling, contemplation can move you out of the resignation that leads to depression.
I used to fear opening that door, because I thought it would take me to places I would not recover from or return to. In some respects that fear was not misplaced, you don’t stay fixed, change is inevitable but the change does not always have to painful.
In order to cope with my everyday, I had to make sense of the why. The answer to why more often than not, is embedded in the past. The answer to why is not always an answer we want. It takes time to find the courage to see the answers that really matter.
In the early stages, the one pain that was always difficult to resolve was the loss of the opportunity to become a mother.
It was a bittersweet thing to find out I was pregnant in the first weeks of our separation. I haven’t looked back. I will give credit to my ex-husband. He told me how he felt about the decision I had to make, he was not happy about it, neither was I. He had the good grace to leave it in my hands. I have been forever thankful for that gift and we have been able to create a reasonably stable shared family arrangement for our son.
So…to be told my son might experience significant difficulty in life….well…
It didn’t seem fair. (It never does, does it?)
The experience I write of now, is in the past. I have been busy doing life, transitioning Asperger children into adolescence and adulthood and supporting a new husband. I have spent time learning, supporting and advocating. At the moment I am writing on the fringes and sharing the process I went through. When I get a bit further on I will move in and out of my personal story because there will be more knowledge to gain…for you and for me.
So back to the beginnings…
Given very little to start with I can’t say I was proactive, in fact a bit more of the opposite.
Denial fed my fight and flight responses. Looking back at the people I’ve met in similar circumstances, I wasn’t unusual.
I contemplated fight (me and him against the world of ignorance and prescriptive response), while passively engaging in flight (getting on with the every day and pretending it didn’t matter). In this instance neither are helpful.
When someone tells you: “Sorry the path you’re on isn’t straight with a few turn offs, it’s likely to be quite windy, you might hit the odd dead-end, you’ll definitely have mountains to climb and descend, the odd pothole or two and we’re not really sure what your destination will be”…well, sometimes it’s much easier to just get in the car, pretend the road is as it was and appreciate the scenery.
And for a while that’s a good way to go forward. Fear of an uncertain future meant for a time, I did just that and stuck my head in the sand. I don’t mean by that, that I ignored IT altogether. I did seek knowledge and understanding, I did look for answers. But for a long while I didn’t connect the dots and contemplate the implications of my son’s diagnosis. I’m sorry to say I unconsciously set him apart. Aspergers resided within him. It was his problem not mine. It’s not hard to do.
Sometimes we can be awake and asleep all at once. Sometimes we think we have everything figured out, when we don’t at all. Sometimes just getting up in the morning is enough.
In 1998/9 it wasn’t really clear what one was supposed to do, when someone told you, your 4-year-old wasn’t functioning like the rest of the 4 year olds around him.
I asked the Kindie staff what I should do. A paediatrician was suggested. I was told that one recommended paediatrician was known to “medicate”. At the mention of this, a number of thoughts began warring in my head.
“I’m battling with acceptance and denial and the complications of ‘abnormality’. Do we really require ‘medication’? “
All manner of experiences inform our decisions, this was one path I wasn’t sure I wanted to tread. We describe instinct or intuition in a magical way, as if its plucked out of the air and provides us with serendipitous answers. Ultimately intuition is based on everything we have ever known and think we have forgotten. My decision to avoid medication was ‘well-informed’, if instinctive.
I wanted my child to have the same opportunities and potentialities any other child has. It was just wrong that he didn’t and he wouldn’t. How in the hell was I going to make sure he did, when no-one seemed to know exactly what I should do next? Maybe they all had it wrong. “He’s just fine, I’m fine, his father’s fine…how could it be possible he’s that different?”
So I took a forward step in the interest of maintaining the status quo. Denial. I decided first to make sure they were right…or more to the point, more than hopefully, wrong! And all the time I’m taking this approach because it takes me a few steps further away from the next logical step. The next logical step may or may not seem so obvious to you now….it definitely wasn’t to me. But more about that later…
Around 1999 not a lot was known about Asperger’s on the Sunshine Coast.
It seemed the only option I had available to me was to visit the medicating paediatrician. Yes, being a single mum meant being financially supported by my ex-husband and welfare. I was no longer able to pursue a new career in Training consulting in Brisbane. The 6 hours of travel had drained me when I was pregnant (admittedly unaware I was, but not a feasible option now).
After a number of conversations with the Kindie staff, I decided I would have to visit the paediatrician and prove everyone wrong. I don’t know why, but Felix seemed to reserve some of his rare but most unusual behaviour for this Doctor. If the Doctor had clinical tricks that manifested wayward, erratic responses they weren’t evident to me. Within minutes Felix had climbed on him and suddenly what ever he did from that point was in the spotlight. The peaceful, shy little boy I knew disappeared. Naturally, it took the paediatrician very little time to concur with the Kindie staff. He did suggest that his reactions were mild and that he could prescribe medication to control his attention deficit responses.
This was too difficult. It may seem ridiculous to suggest that I was shocked again, but I was. The voice of denial is a potent persuader.
I needed to think. He seemed to be in too much of a hurry to prescribe, when it wasn’t clear to me anymore exactly what was at issue. I declined the medication and after receiving a referral to a local District Health Service, left….never to return.
At this point I was chewing a very bitter pill and wanted nothing of it.
Words fail at describing the inner turmoil and conflict that arises when debating the meaning of ‘normality’.
Are there degrees of it?
He talks just fine. Tick the box.
He walks just fine. Tick the box.
He listens just fine. Tick the box.
He sees just fine. Tick the box.
He laughs just fine. Tick the box.
He thinks just fine. Tick the box.
He runs, he jumps, he builds, he counts, he jokes, he paints, he sleeps, he reads, he plays, he eats….
Tick the box
Tick the box
Tick the box…
He’s not perfect! Nobody’s perfect!
but…..
In hindsight (lovely thing it is), the referral was the best thing the paediatrician did for me.
I was provided with the help of a Speech Pathologist and a Psychologist. Kindness in good measure, went a long way to helping me take the smaller details, on board. That was all I was ready for. In testing Felix clearly displayed “pragmatic problems and difficulties with processing information”. These had not been obviously evident because his speech was fluent and he was already exercising strengths that accommodated the weaknesses.
Later it would become evident that he displayed deficits similar to dyslexia (though he was never formally diagnosed – refused) and he appeared to be hyperactive (ADHD – Attention Deficit Hyperactivity Disorder). My take on that is that he experiences ADD (Attention Deficit Disorder) and as a child, became hyperactive when his attention or capacity for patience was stressed to it’s limit (another topic to consider).
I know that while I am writing this, the approach to labelling children in this way has changed and there is a preference to determine what deficits are evident and to treat accordingly. Please, don’t be offended by my references, they are simply describing past experience. You will find my approach much more considerate, I was simply dealing with what was available.
I will stop for now and continue my story soon.
Absolutely Asperger 