Friday, August 17, 2012

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!


Kim-Marie said...

Wow! That is mothering from the heart. Of course you're going to stand up for your child! Bit hard to be II if you're acing all your school work, isn't it?!

The Kids Are All Right said...

What a beautiful post, and a beautiful mum. Your experience is not something I necessarily understand - there is a lot I don't know about ASD - but my impression is there is such a battle between the parents and the "system". It sounds like you're winning :)

Catherine Rodie Blagg (Cup of Tea and a Blog) said...

What an amazing story. Thank you for sharing it. I find it staggering what teachers will tell parents. I am dyslexic and at 13 my English teacher told my mum that I wouldn't pass my GCES's (end of high school in the UK). Thank god my mum didn't believe her and with lots of support and encouragement I did just fine. Mums know best!!

Grace said...

Your story is truly an inspiring one. Stories like this are important for other parents to keep fighting and believing that they know best for their children.
You're right. Your boy is truly drop dead gorgeous! Wishing him much success in his high school years...and beyond!

Anonymous said...

I have been a long time reader of your blog, and I passed it on today to a new friend of mine who has a young son who she is struggling with the school teacher to see as a child with different needs and not as a "naughty boy". The moment she read this post she messaged to say she didn't feel so alone in waging this war against putting kids in boxes whether they fit or not.

So I just wanted to say thank you for not only providing a delightful and insightful read but for also helping my new friend feel less alone and afraid. And for showing that with hard work kids can shine!

Xxxx Mel

Madmother said...

Glad to help Mel. It can be very isolating when no-one close to you lives it. And when everyone tells you how wrong you are. I wish people would understand every child is an individual, even those on the spectrum.

Kim-Marie - yeah, funny that. He is also not on nor has been ever, an adjusted curriculum, so he is acing it with the best of them. Wish I could track down some of the naysayers now... but he (Boy 1) tells me that is being immature, lol.

TKAAR - a work in progess, ups and downs, but yes, winning!

Catherine - I know you from Muse Wars! And Mum does no best in most cases, eh?

Grace, terribly, terribly biased, but yes he is, isn't he!

Madmother said...

Whoops - meant "know best", lol.

Seana said...

Hello! Good to meet you, what a lovely post to read. I have a son who is 15 now considered to have 'mild atypical autism'... huge and strong, plays the drums and rugby league, has huge learning difficulties but never mind. In so many ways a typical teen, and in many not. A lovely boy, who can still drive his mother slightly barmy - but that's normal right?

Sarah Evans said...

I don't know why the specialists can't just admit they aren't able to accurately assess the intelligence of someone who would be so thrown by the new and different situation and people the test would present that they wouldn't be able to concentrate at all!

I guess then they couldn't call themselves specialists though...


Lee said...

It's such a shame that the people/organisations who do the assessments don't follow the kids through to see how they do. That would give them some genuine stats and evidence that maybe they can't predict as much as they think when a child is 5. So maybe they shouldn't. You must be one proud mama when you see that report! Great post, so nice to pop in here.

Anonymous said...

The comments you got sound like the ones I got. It's such a shame that too many professionals are too focused on those numbers and then decide what the child should be able to do. All children have gifts and talents that we should all be celebrating. These specialists need to start seeing each child as an individual, because that's what they are.

I'm guessing the school didn't bargain on your strength and determination - which is a good thing for your boys.

I know there are still people out there who think I'm delusional about Js abilities. He'll show them one day and I'll celebrate it with him.


Welcome to Jaak's Place said...

Beautiful. Love hearing about your journey and beautiful son. It's so inspirational and reading this has made me remember just why I wrote about K and just why I should start again...without acknowledging overcoming the adversity it is harder to see the amazing achievements we've made along the way :). xo