The Mother

I wrote this in a note on Facebook, and then decided to share here too. Sorry for the double up for those who are on my FB list. Am also linking for both weekend grateful and FYBF. It's been THAT sort of week.

The mother walked, bent double under her load. On her back were her children, her career, her aging parents, her friends - though who, when and what changed as needed. Her face pale with perspiration, her legs shaking with effort, she put one foot in front of the other, constantly moving forward though sometimes at a snail's pace. Some days her children were dead weights, exhausted, stressed, the pressures of school, social acceptance, conforming wearing them out.
Other days they were as light as feathers, and she needed to tie a string from her heart to theirs so they did not float away with happiness and laughter. And on the terrible, black, heavy days when she thought her back would break, the load would suddenly lighten and the pain lessen and she would look to her side where she had not realised her loving partner or a dear friend had appeared, and they would say: "Hey, I'm here. Do not worry, let me carry some of it for a while whilst you learn to breathe freely again."

Thank you my friends and husband for allowing me to exhale.

Parenthood Review - Maybe I should do this weekly?

Hello again. It is time for me to once again address this week's episode of the Ron Howard acclaimed series: Parenthood. Well, the bit in it that addresses Asperger Syndrome and its accompanying issues any way.

Yes, again. Stop rolling your eyes, I am entitled to my opinion thank you.

Credit: NBC

Last night's episode here in Australia contained an epic emotional meltdown in the emergency department of a hospital. To summarise briefly, Max (the child with AS) and all of his extended family (parents, sibling, grandparnets, aunts, uncles, cousins and various partners along for the ride) were assembled waiting for news of his cousin, Amber, who had been in a serious car accident and was undergoing surgery.

Withing three minutes of the beginning of this episode Max and Adam have a confrontation as Max appears to show absolutely no empathy for any needs other than his own.
"I wanna eat"
"Right, let's see what they have here."
"No Dad, you said that we could go to get pancakes
"Hey"
"and now I've been here for an hour and a half
"Hey"
" and I wanna go."
"look at this, this looks good,"
"No I don't want a danish
"Max, take it easy. This is one of those times where we have to be patient, okay. We're here for Amber and Drew..."
"No. You said that Amber was not going to die..."

You can see where this is going, right? It escalates into Max shouting, "I'm hungry! No Dad, I don't care about Amber right now. I'm hungry and I wanna eat now!"

Of course his Grandfather then yells at him, which takes it even higher... Max tells him to shut up, lashes out at his mother physically... and so on and so on.

Of course we all compare this child to our own, especially those diagnosed with Asperger Syndrome.

But, everyone needs to keep in mind IT IS A SPECTRUM! I watched this episode and listened to Adam talking to his son about empathy, what it is, how to act, and I can tell you I am with Tony Attwood on this one...

At a conference I attended many moons back, Attwood stated: "It is a misconception that these children do not feel empathy. They feel empathy, but have difficulty expressing it.

We have an emergency hospital room story of our own. My mother. Another fracture in her spine. Along with bleeding from her bladder. A large hospital in the capital city of our state. We arrived at 6pm, and were still waiting for her to be admitted at 10pm. My oldest was around the age Max portrays, maybe a little older. I asked Big Boy to take them home, and I'd book in somewhere for the night. It was an hour's drive to return to our mountain.

Both my children refused, point blank. Both stated unequivocally that they were staying to make sure their Nanna was looked after and settled and then we would all go home together.

BOTH. You could not have picked the child on the spectrum that night. Amidst, noise and chaos, blood and screaming, flickering fluro lights and stressed families they were calm, determined, supportive. Of me, of my mother, of each other.

And so that scene and THAT meltdown was one I found totally foreign. And yet I know others related, and I know it is yet again a case of informing, educating and for the drama, worst case scenario.

Boy 1 & 2 May 2011: Credit Madmother

So what did I get out of the show last night? Gratitude. Thank you God for giving me this amazing child, for both my incredible sons. Thank you for his heart, and strength and compassion and EMPATHY. And thank you for this incredible journey and experience. It sure as shit ain't boring!

Done for this week, and as it was the season finale who knows when the next will be.

Oh, and that night at the hospital? We arrived back to our beds at 2.30am.

Parenthood - The Day After.

If you live here in Oz you may have watched last night's episode of the Ron Howard hit show "Parenthood". If you have a child on the spectrum, especially one with Asperger Syndrome, you may have wanted to jump through the television screen and repeatedly thump the father of Max, the young boy portrayed on the show. The character is a child diagnosed with ASD - specifically, AS.

Max Burkholder as Max Braverman in Parenthood

"Some people have disabilities Max..."

"For you Asperger's is one of those tough things..."

By this point I was yelling at the television, believe me it wasn't pretty.

Then I stopped. For this WAS the reality so many live on this rollercoaster of emotion. This WAS an accurrate portrayal of a father in pain trying to connect and understand this new world early post diagnosis. This WAS truth in television.

Would I ever use those words to my child? Hell no, but we have been on this path from a younger age than this character. We have seen the gifts as well as the hardship, we have lived through the dark days and are now basking in the light.

It is painful and hard for a parent to let go of THEIR aspirations and dreams for their child, not realising that even without Asperger Syndrome those aspirations and dreams may never have been those of the child. And sometimes what we end up with far surpasses anything we could have ever aspired to.

I referred in a past post to a poem Boy 1 wrote when he was seven. We (he and I) have decided to share it again (just remember it is copyrightfully HIS people - if you wish to use it ASK)...

Rainbow Life

You may think I’m different

The way I think and play

But wouldn’t life be boring

If all was the same way

 

See I will change this world

A little bit by bit

And when my life is over

This will be my gift

 

I’ll leave the world a thinking

A mix of logic and my dreams

And there will be no limits

Nothing will seem extreme

 

Think of it like ice cream

Some are just vanilla

I’m a rainbow swirl

All colours a shimmer!

Copyright Boy 1 2006

 

 

Look beyond the diagnosis, look beyond the intervention, the therapies, the anxiety and obsession. Look at what you have, or we have, or your neighbour/cousin/schoolchild or joe blow in the street.

 

Rainbow swirl. Pretty damn special. By the end of the episode the father is slowly realising he is wrong in his approach, that his vanilla viewpoint may not be the only one. I hope the storyline continues down this path, even if it meanders a little off track.

 

Maybe I should drop Ronnie a line, just to make sure. I'm sure he'd appreciate a little insider knowledge from a 

A Memoir in Memory of Memoir Mondays, with Kudos to Thea for her Inspirational Post...

Yeah, I know, the title itself is enough of a novel without the post... But here goes, *deep breath*.

I was MIA for a few weeks as well you know, sunk into the quagmire of sadness and nursing a severely wounded spirit. And so I missed a couple of the infamous Memoir Mondays. Imagine my sadness when upon my return I read this post of Trav's on his aptly named  I Like to Fish... blog.

Now, whilst I understand the reasoning I am one who truly hopes this is a mere skuttlebucket in the Travisphere and that he hurries on back to us blog buds.

But in my own little world as I am, I am holding a Memoir Monday all on my lonesome. If you wish to add to this pseudo blog hop, feel free to leave link in a comment and I'll add ya at the bottom of this post. All you need do to join is:
Grab the button from Trav:

Do your memoir and link it here, it has to be a true tale, and either add a comment on Trav's Blog to let him know, or tell me to do it. Just so he knows we care...

Now, on with my tale... and the story behind the second half of the title.

In my google reader today, up pops a post from the lovely Thea at Do I really Wanna Blog? Now, this a subject near and dear to my heart, as not only do I have two terribly fussy eaters, but I myself was one such creature in my childhood (and even a little now as a all growd-up).

All those wonderful little jibes sounded so familiar, all those "Ooh, what do they eat then?"

comments we endured, not to mention the nasty holier than thou attitude of those "Oh, my kids will eat anything I tell them to" pariahs.

I choose my battles, and as long as they eat, and eat reasonably healthily MOST of the time I sure as hell don't stress over diet.

This brings me to my Memoir Monday Memory...

As I mentioned my children in their finicky fussiness taker after moi. However I grew up in a household where by hell, you ate what was put in front of you or else you will sit there until did! No, not Wise Woman, but Grumblebum imposing his formidible will upon his picky, stubborn daughter. Did I mention how much I take after him in lots of ways?

So, there we'd sit. Glaring at each other. Until I got smart. Learnt to always wear a top or coat with deep pockets, made sure I did a toilet run mid-meal (with masses of food buried deep in my stretched cheeks), brought the family pet in under the dining room table (though that little bugger hated most of the same things I did - bar lamb's fry... very grateful for his appetite for lamb's fry), ducked into adjoining lounge room on a quick ruse..

Wise Woman often remarks that she was still finding food stuffed down the back of the lounge decades later.

Did it change my eating habits? No. It wasn't until I was much older and moved away that my tastes expanded. But I grew up, as will my boys. I don't sweat the small stuff, as long as they eat reasonably healthily most of the time, then I am happy. I tell you though, the smell of fried lamb's fry still makes me dry retch.

And next time my darling sister-in-law makes snide jibes about my kids "And what on earth do they eat?" when they refuse her jam drenched cheese dip, I'll sweetly remind her of the times she bought McDonalds on the way to our place for a meal, when I had already checked and organised their favourite foods... How short memories can be.

See Thea, you are not alone in the kitchen as the short order cook (though I personally prefer to be called Queen), in fact I doubt there would be elbow room!

Schnitzel anyone?

  

Autism Sucks

GUILT

My latest offering on the Autism Sucks (but our kids don't) website.

The Glass Heart

He has a glass heart, gloriously beautiful, vibrant and filled with the colours of innocence, passion and joy. It beats in syncopated rhythm with a tempo driven by loyalty, imagination, friendship and compassion.

But a glass heart can shatter if hit hard enough. Or it can be slowly chipped away until the damage is so great it can no longer sustain its purity.

It can erode under the everyday pressures which flow from expectations, judgement and censure. It can dissolve under the strain of conformity, the weight of derision, the tension of trying to fit in.

I can only keep it safely encased in my hands for such a short time, then it must be handed over to the care of others, less experienced and more careless than a mother. And I must sit and wait, and hope it is not returned so badly damaged that it will never be repaired.

Autism, Asperger Syndrome & Absolute Acceptance

I have a link for you. Another mother of a child on the spectrum posted this in a parenting forum. I could kiss her. I do not seem to have the time or the inclination to troll through pages and pages of literature nowadays, but sometimes, when I follow someone else's research, I find gold. This is one of those times.

An Inconvenient Youth: Raising Children with Autism

It is a heartwarming, hand-holding, tear-jerking, hell of a piece. I could have been sitting at that table, I felt like I was home. I also found incredible similarities to my piece written in 2007.

It was especially reassuring to find like-minded parents, mothers and fathers who do not have some insanely driven need to cure their child. This is the way they are. I loved the terminology of this article. My child is definitely a genetic rubik's cube, uniquely scrambled. Suits him and he himself would embrace this explanation.

This excerpt sums up how I think and feel:

And that leads to a bigger issue—one that really burns this group: the implication that accepting your child's autism is not okay. This attitude is due in part, they feel, to Generation Rescue's dominating and oversimplifying the conversation in America about autism. The simple fact is that not all autistic kids can "recover." "We need to reexamine what it means to be a successful adult," says Erin. "To me, now, a successful adult is a functional adult. We need to give these kids an opportunity to have a shot at meaningful jobs and secondary education. Maybe they'll be bagging groceries, but they'll be paying taxes. They'll be law-abiding citizens. It's not just about the money we'd save, it's about the contributions these kids will make that will benefit everyone. I strongly believe that the energy crisis is eventually going to be solved by an autistic 10-year-old boy who is perseverating on batteries. He's got that kind of focus."


At this point, however, society still has a long way to go in terms of tolerating people who behave in unfamiliar ways.

It could not have come at a better time. This week's Who magazine issue (December 21, 2009) contained an interview which really burned me up. Maybe it was a misquote, or the journalist was utilising the magazines trashy reputation for chequebook journalism and decided to misinterpret a comment. I hope this was the case. If not, the fact that one of our once high profile football players, Mat Rogers, states he thinks his son who is diagnosed with ASD:
"will be a normal boy... He will be a normal boy" is horrifying. And if he doesn't conform to Rogers ideal of normalcy? What then? and how do you define normal anyway? I have yet to meet any one I could call normal. Mat Rogers himself would do well to read the linked article, maybe it would make him realise how offensive his comment really was. Not only to other parents of children on the spectrum, but to his own child.

Boy 1 is an incredible person in his own right, and as much as I wish life let him walk this path a little easier, I do not want him to be anyone other than himself! He amazes me with the depth of his wisdom, caring and compassion. He inspires me. I am humbled to be his mother.

Why on earth would you want to alter this? Could YOU look into his eyes and tell HIM he's abnormal...