The What If's... FYBF Our Story

Firstly, a disclaimer. I am not a psychologist, psychiatrist, paediatrician, doctor, speech therapist, occupational therapist or any other type of specialist. What I AM is a mother of a son on the autism spectrum, which in my opinion, makes me a little of all of the above.

My oldest son is fourteen years of age. He stands five foot eleven inches, tall, slender, and to be totally unbiased, drop dead gorgeous. He is in his first year of high school (Grade 8 here in The Queen's own land). His smile could break a million hearts, his laughter warm a million more.

My son. My beautiful son. My wonderful amazing straight A, acing school, report card written in such glowing terms you need sunglasses to read it, son.

My son who has Asperger Syndrome.

He was three when we began this journey. Three. He was five turning six when we began to formalise it. Back ten years ago there was no financial aide, little support and not much information. Early intervention was a mix of public and private chaos. We were lucky, we muddled our way onto the very path that is recommended for all littlies on the spectrum today. Speech therapy, physiotherapy, occupational therapy, psychologist, social skills group... somehow in  the confusion we got it right.

Which leads me to the point of today's post.

Intellectual impairment and autism.

My son was assessed using all the modern diagnostic tools, I could use all the lovely letters here but they may not mean much to a lot of you. Things such as CARS, WISPII, DSM IV.

But the actual results do not stick in my mind, what is frozen there was the psychologist's words.

Moderate Intellectual Impairment.

My son. My baby. My beautiful boy. I cried that day. And probably the day after too. It is all a little foggy now.

What I didn't know then is that the IQ testing part is notoriously inaccurate in results when testing CHILDREN ON THE AUTISM SPECTRUM.

What I didn't know was that these amazing kids do not test well at all, and their ability is often recorded far lower than it actually is.

What I did realise within 48 hours was whilst testing was well and good, he was still MY son, the exact same child as before diagnosis, before testing, before this specialist's words.

My son.

Whom nobody knew as well as I, his mother did. And in my heart there was no doubt that he DID NOT HAVE AN II.

Over the next few years many people, teachers, specialists, parents treated me with sympathy as they decided I was delusional or in denial. I even had one senior special needs educator (they brought in the BIG guns to deal with me) tell me I was "unduly scaring my child with my inability to recognise his shortcomings"... yeah, that one I can quote word for word nearly a decade later. 

Poor, poor woman. Silly, delusional Madmother.

The crazy woman.

The mother who knew, loved and accepted her child whilst still believing in him. The mother who fought tooth and nail for his rights, for who she KNEW in her heart, he was, for the man she knew he could be.

For the young man he is today.

I guess my point is this. For those of you on the start of this journey, believe in yourself. Trust your instincts as a parent, have the guts to stick to what YOU know your child to be no matter what the so-called experts say.

Boy 1 Grade 7 Graduation 2011

It is worth it. It is beyond worth it, it is incredible, amazing, heart-filling, bursting with pride, jaw-droppingly WOW!

Closed Mind, Closed Heart - Open Mind, Open Heart... My Weekend Grateful.

A minute ago I read a status from a friend on facebook. Now this lady is a very devout Christian, and was making a comment about how upon meeting the local transference healer and saying "Hello", the other person's eyes rolled back in their heads. Following on was lots of happy clapper comments on demons and the spirit of Jesus and the power of God. Judgement.

I did not expect to feel as angry and disappointed in the whole thing as I did.

Closed mind, closed heart.

I was brought up by Wise Woman who was, as she termed herself, a happy clapper. A born-again Christian strong in her beliefs, devout in her devotions, true in her worship. I attended many conferences and meetings (through choice, Mum would say "I am going to this, you want to come?" and sometimes I would, sometimes I wouldn't), many lectures and church services.

Some of them were fantastic, inspiring, wonderfully full of passion... some we sat at the back and watched the obvious charlaton lay hands on people. And as they fell backwards, she and I would giggle and whisper "Damn, he's pushed ANOTHER one over!"

But never, and I mean NEVER did I feel judged for my lack of faith or choices in these places.

And this is what I find hard. My mother was a true Christian. A woman, kind of heart, open of mind. She never lectured, preached or even discussed much of her beliefs with others; and yet she was much loved by so many. I can remember her floating in to my house after one such conference, this one about the healing ministry. A group of my Uni friends were gathered in my lounge room. Mum came in, sat, chatted for a few moments then walked out. My friends all were in awe of how she glowed with some indefinable spirit, shone with joy. They asked me, where had she been to come back so very obviously uplifted? I told them. The jaws dropped - floored by the fact she never preached, lectured nor judged any of them. The term "a true Christian" was muttered under many breaths that day. I sat and smiled. That was exactly what my mother was. The local Jehovah Witnesses loved to drop by her home even though their beliefs differed. They enjoyed nothing more than listening and debating details, revelling in her articulated knowledge.  Oh, the arguments they all delighted in, sitting on a sunny day on Wise Woman's verandah. Their hearts broke a little on the day we lost her.

I guess it is no surprise that for me Christianity is about understanding there is so much more in the universe than what we know, being open to ideas, to debate, to learning. THIS is how I was brought up. Not this close-minded "Get thee behind me Satan" bullshit.

As my mother approached the end of her life, she watched on in joy the growth of her oldest grandson. Boy 1 is a very devout Christian, unlike his parents. He also believes in the power of nature. He is an open vessel, he reads runes, practises crystal healing, has an ongoing interest in transference healing, chakras and reiki. His love of God and Jesus is unshakeable, deep, strong.

One religion teacher at the primary school made the mistake of asking who knew about a particular quote from the bible... An hour later he walked out shaking his head muttering to Boy 1's aide... "That child is incredible! He knows and understands more about the Bible and God's work than I do." Grade 4.

Open mind, open heart.

This, for me, is the true definition of Christianity. A love so pure and generous that it does not close the door on the other powers in life. Being a Christian is not about judgement or preaching, it is about belief, strength and love.

I know I will offend some with this post, but to be honest I feel so strongly about this that it was not a choice, it was a compulsion.

It is how my mother brought me up, and how my son expects me to be.

Open mind, open heart.

And I thank God that he gave me two such wonderful human beings to be in my life. And for that, and so much more, I am truly grateful.