I can’t recall exactly how I was approached, I was in kindie arriving to pick up my son and one of his kindie carers asked me to stop for a conversation before I went in to him. I think it went: “I just wanted to have a chat with you about Felix”….and in amongst a series of carefully planted, genuine and concerned statements “We’re thinking he has ADHD”.
I couldn’t agree…naturally, who would straight up?
However, in this instance I had a good reason to refute the idea.
On one occasion, when Felix was younger (around 2 years old) I’d fallen asleep…not unusual. But I was a single mother, passed out from fatigue, and….on waking experienced one single, peaceful moment before horror mobilised me to search for him. I found him happily playing with his toys in his bedroom.
No child with ADHD (Attention Deficit Hyperactivity Disorder) I argued, would be in the same place a significant amount of time (about 2 hours) later.
I clearly remember the way he smiled at me then, it was a knowing look, with a hint of mischief as if he fully understood that I had done something wrong. It wasn’t a ‘deranged’ smile, it was a ‘caught in the act, but it’s ok, we’re all human’ smile. Reassuring, a little unnerving (coming from child to adult) and heartwarming.
And yet maybe there was something….
Of course doubt is always there to wriggle out of the dark, deep recesses of your mind and it wasn’t long before I was in another conversation about Felix. This time I wasn’t armed with a reasonable solution and those sneaking doubts began to supplant my confidence.
“We think he may be…it’s new, there’s not a lot known about it…but we think he may be, I’m not sure how it’s pronounced…Asperger.” (Around 1999. Not a perfect, isolated quote, much was said about his strengths and clearly he was well liked.)
Being told your child is not quite like the others is a daunting prospect. Prospect being the appropriate word, because the reality of it takes some time to establish a secure foothold.
So began my journey away from and into Aspergers. This reality was a double edged sword. One, on which, I foolishly bargained with my own conscience and very nearly lost my son.
The one statement that reverberated from those early, difficult, numbing, unsettling conversations is still clear today: “Between us we care for thousands of children and knowing what we see in the development of those children, it is clear to us that he is different to the other children.” (Again after all these years, not an exact quote, but close.) For as long as I tried to find other answers to their need to determine my son’s differences, for as long as I struggled against the inevitable, this statement reclined at the back of my mind and teased my numbed conscience. It was a bitter pill to take. Fear drove acceptance and understanding away. It was a journey of doubt, struggle, anguish, acquiescence, determination and always compromise.
I can’t imagine being a parent confronted with any kind of physical disability in their child. It’s not my experience. I do know it would be an emotional roller coaster and it would require the same kind of courage.
Being confronted with some mental/emotional difference in your child is disturbing in the extreme. Shock doesn’t quite describe the feeling. Perhaps because in immediate crises, eventually shock subsides. You inform and galvanise for the future and step by step move forward. Whereas in this instance, shock moves through varying degrees of despair, futility, uncertainty and hope and then cycles back through you again. You’re confronted with what was your potential reality and what is, over and over again. There’s a high degree of the unknown, because you’re dealing with an anomaly of the mind, not the body. All the opportunities that were available, seem to be swamped by intense uncertainty. Perhaps the experience is the same for those with physical disability. The major difference: it’s not visible.
Tamsin Greig’s portrayal of a mother experiencing an Asperger diagnosis, in the TV mini series The Guilty (2013), is excellent.
For a long time there’s a need to stay attached to what was possible without that diagnosis. In that respect it is, as was suggested to me by another mother of an Asperger child, like a death sentence.
The potential Asperger reality for me in 1999, was extremely nebulous. Not a real lot was clear or known about Aspergers in my part of the world. I did actually ‘search’ the word Aspergers, on what was early days in internet searching and found very disturbing results. So disturbing I tragicomically wept my heart out and determined that I would remove my child from the outside world, create a cocoon of love and pit myself against the outer forces on his behalf. Fear reigned supreme, why wouldn’t it when the prognosis was psychosis? Suddenly, this beautiful little being you’ve been nurturing on a consistently ‘normal’ basis ( as ‘normal’ as you perceive things to be) treads quite different footsteps to the others and his possible future does not read anything like a ‘normal’ future. In fact its dire.
If you are a parent of a small child, contemplate for a moment the idea of being told that you’re child is likely to become psychotic. It’s a difficult thing to imagine, daunting to accept.
For those of you who are ‘normal’ (yes, I will address that word another time), I don’t believe you can really begin to fathom the meaning of bringing up a child that is ‘other than’. I’m not saying ‘normal’ life doesn’t have its pitfalls, it does – now amplify them (…and I will detail ‘amplification’, in a later post).
Many media reports have said Aspergers is on the increase and cause is still uncertain. Expression and diagnosis can vary and be complicated. (At this point I will not reference these comments as they require much more detail and I will cover them at a later date.) More than likely Aspergers has always been around, we just haven’t seen it as something as distinctly other, till now. Or we have, but circumstances have meant that it was not critical to distinguish the differences and it was enough to just survive in the world. Quality of life was not an imperative.
Consider the character Floki in Vikings (2013) and countless other stories, myths and fables peopled with all manner of eccentricity, intelligence, wit, insanity and inhumane behaviour.
Whatever the reasons here it is today and it’s a contemporary reality that needs must address. Increased knowledge and understanding, has provided the opportunity for earlier diagnosis and treatment improves. (Another future topic)
I have raised these points only to pose a thought, consideration….. If you think back to when you were in primary and high school, how many of you can recall children in your classrooms who were excessively shy, a bully, a nerd, a geek, an eccentric or even a ‘psycho’ (used in the slang sense not the diagnostic sense)? In every classroom there will be children that display aberrant behaviour, who are set apart or in rare instances embraced for their difference. So in contemplating your classroom experiences, check this question with your friends and note how those memories multiply. The reality is difference has always been there. This is the grist for the myth and fable mill. All stories are embedded with the known, it is impossible to fill them with the unknown. The imagination we use to describe the unknown is filled with the known.
Now, imagine the parent that contemplates this future for their child….if you can.
Felix is now 20 years old, sharing a house with friends,100km away and studying Physics and Maths at Uni. After a year of student poverty he was able to score a part time job in a burger cafe. After a rocky start playing soccer, he chose swimming and basketball and competed at state level in swimming and represented his school in basketball. He is also a keen runner, biker, surfer and skateboarder in his spare time.
Part of his story is my story, part of my story is his.
There truly is no beginning to our story and no end to it…for it does not start with Felix’s diagnosis and it does not end with him.
But that’s another story.
References:
The Guilty, 2013, TV Mini-Series,Hartswood Films & ITV1, distributed by ITV, United Kingdom
Vikings, (2013), TV Series, World 2000 Entertainment, Take 5 Productions, Shaw Media, Irish Film Board; Special Broadcasting Service, Ireland & Canada
Collages completed with Diptic app on iPhone
All photos by me, except the last one, bottom right hand corner by Kat Meatcham. Nice work Kat!
Absolutely Asperger 