Aspergers, Aspergers, Aspergers

Seems to be the running hot topic in todays blog list. Yes, I know I follow a lot of ASD Mummy Bloggers and so these posts are to be expected, but usually they are not simultaneous. These are blogs about many things, and of course our kids figure largely, but it is rare that so many post about the Autism Spectrum at the same time.

One intrigued me with the title:
The ‘impact’ of Asperger’s on my family life Like a Dump Truck is a regular read of mine. I find she writes as I think, and thus I always enjoy the posts and the points. This entry was no different, prompted me thinking what would I say to such a question as this mother was asked:
"I was recently asked “what has your son’s Asperger’s taken away from your life?”

My reaction would have been very close to what LADT posted, but like everything, time changes your impressions and answers. But the end result would be the same. Her  answer:
No, his Asperger’s has not taken anything away from me. Instead, it has given me more love and understanding than I ever thought possible. Exactly. Whilst it means a lot of things are different to what others experience, so are the rewards greater.

Another friend (and yes, she is just that) was struggling with what, where, how much to reveal on the blogosphere circuit about her family struggles and battles with ASD. As usual, my blunt response provoked a *ahem* strong reaction. But she has bravely decided to lower the guardrails and allow others to see just how hard it really is in the early years. I won't post a link here, as I am unsure how much public interaction she wants at this point, but I truly believe when we post about our lives it helps others AND it also will show our kids just how far they have come, and how proud they should be of themselves as they grow.

And that brings me to us. We have (obviously) had some very challenging times as a family, totally autonomous to the ASD aspects. But on the Aspie front we have certainly had some swings and roundabouts, both victories and setbacks.
Minuses:

• Boy 1 deciding on flight to funeral that HE does not cope with flying, and has panic/stress attack on landing (not a loud one, but I do think the arms of his seat will still have the marks of his fingers embedded in them, and the sweat poured off him). This meant the return flight was not good either, and we will not be flying again for a while.
• School meeting a month or so back. Was decided to implement an adjusted expectation/curriculum to allow us to set a 45 minute planned study time with no penalties if work not finished. Worked well, but on our return stress/anxiety returned for a few days.
• Appointment with paediatric psychologist made to talk about anti-anxiety medication. None available till August.

Pluses:

• Most of the time Boy 1 is COMPLETING all homework and assignment expectations in the 45 minute slot. Now pressure is off he knows he has to sit and work constantly for that time only. And so without the panic/meltdowns his work ethic is fantastic and the brain is no longer crippled by pain. Big win!
• Increased fish oil capsules (Efalex) to 8 a day. Made big difference in concentration/attitude at school. Teachers have been really vocal about how impressed they are with him the last week or so.
• Psychologist is in same clinic as the proposed psychiatrist. Back from hols, spoke to me at appointment for Boy 2 last week. Was lovely and assured me that whilst it is going to be hard yards in the next few years, he truly believes Boy 1 will come out the other side as a happy, successful adult. That he sees hundreds of boys and the ones like Boy 1 are the success stories. Nearly cried in relief.

And so life goes on.
And to my fellow ASD bloggers, hang in there. We are a bit further down the path than some, and when I read your blogs I am reminded of how hard it is at all stages, and how hopeless it can seem. And with the wealth of hindsight I want to reach out and hug you, but I also know a hug is not always what is needed. And so if I come across as blunt, it is not to hurt, but merely to nudge you out of the fog, as I know I really needed that at times myself.

Just as I appreciate those who are further down the track coming in and giving me a shake when I am wallowing in self despair. Because the truth is these kids are bloody amazing, and we need never to forget it.

An ASD Night Before Christmas...

You all the know the old version, so here is the Madmother reworked one:

An ASD Night Before Christmas

'Twas the night before Christmas, when all through the home

Not a meltdown had happened, not even a moan;

The stockings were hung wherever they could,

In hopes that old Santa would soon hit our ‘hood;

The children both nestled like angels asleep,

As I sat exhausted, having a weep;

The year almost over, appointments all run,

Therapies halted, routine now undone.

For most ‘tis the season for all to be jolly,

In an ASD house to lose order is folly.

And so as I sat, wiped the tears from my face,

I knew that for morning I must myself brace.

He had made me happy, with his pixie-ish glee

The evening was joyous, as the Eve just should be

But tomorrow his senses would hit overload,

And a Christmas Day meltdown was sure to explode.

Lost in my thoughts, stiff drink by my side,

A sudden strange noise drew attention outside.

I walked to the door filled with visions of drunks,

Flung it wide open expecting some punks.

Imagine my shock, when to my surprise

There stood old Saint Nick before tired eyes!

I rubbed them quite hard, then I rubbed them again

As he held out his gloved hand, said “Hello friend”

In shock I did shake it, invited him in

And asked if he wanted some of my Gin?

“No, right now you need it a lot more than myself."

I downed it, surrendered the glass to his elf.

Resplendent in red suit, white beard down his front.

The lounge creaking loudly, he sat with a grunt.

His elf dropped beside him, the sack at his feet

My jaw still hung open, in sheer disbelief

He had a broad face and a big round belly,

That shook, as he spoke, like a bag full of jelly.

“I wanted to drop by in person tonight

Accept my apologies for the sudden fright.

I usually come in when you are all asleep,

To check on the children and spread magic to keep

You all happy and safe and sound for the year

But I have this letter that you need to hear.”

From his red pocket, he pulled out a sheet

All crumpled and wrinkled and covered in sleet.

He unfolded it carefully, well-read as it was,

Pulled out his spectacles, placed onto nose.

He cleared his dry throat and then lowered his chin,

“Dear Santa, well that’s same way they all do begin,

How are you, ready for Christmas this year?

I tried to be good, but wasn’t real good I fear.

My name is Boy 1, I have ASD

Things get quite hard when you have to be me.

See, my Mummy she loves me just as I am

She saves me from falling and tells me I can

Do anything I want, in this great world of mine

She works hard to assist me and allows me to shine.

But she gets quite tired and cries sometimes too

So I have a big favour to ask just of you.

This Christmas please don’t bring me any new stuff,

Mummy, she makes sure I've more than enough.

This Christmas I don’t want my Mum to be sad

So can you please help me to stop acting bad.

I know it is hard when she sees all my fears

So, could you please help me to stop screams and tears?

I know you can do it, I do really believe

In the magic of Christmas, so please could you? Please?

I will do my best to be good next year too,

Oh and I’ve left out some milk and cookies for you.”

He folded it back up, mopped the tears from my cheeks

“You must truly be proud, that boy is unique.

I’ve had tons of letters, is it a million or ten?

But not one of the others I brought back to them.

I think he has granted your one real Christmas wish,

So I will bid you adieu and a very Merry Christmas.”

With that he turned, without a sound he was gone

Leaving me here filled with hope and so strong.

So believe in the magic, when nothing feels right

And

"Happy Christmas to all,

and to all a good-night."

 
 
A very Merry Christmas to you and yours, and may 2011 mark the best of yet to come.
 

ASD - So, You're an Expert, Are You?

This is not the post I am meant to be working on, nooooo. There are two posts I was supposed to be focusing on today: one for my first born's yucky birth story for Tork's award comp - which I will add I came runner-up in with the first award presentation; the second actually for the usurper winner of said award: Romina over at Martyrhood. Cause she is havin' a ba-aby. And a breakdown. And needs someone to curse and blaspheme and shake stuff up a little whilst she enjoys a teeny pause in blogging.

But I'm not. Why? Well because I am an avid reader of other blogs and a lot of times my ideas and inspiration strike from a thought provoking post by one of them. Today it was this one. Heartbreaking, especially to one mother of a child on the spectrum to another.

See, I have this great fear. It may well be an unrealised concern, but it is something that keeps me awake at night. You see, my oldest son has Asperger Syndrome. He is thirteen. And in my eyes he is something of a legend. If you are a regular here you will know what a big heart and amazing depth my oldest has. He inspires most who get to know him, he makes my heart fill with pride. He is generous, loving, articulate, confident, happy, intelligent... just all round amazing really.

To think that someone who does not know him may well take one look at his diagnosis or label and presume to be able to categorise and judge him scares me senseless. And people do. So-called experts do. Other children do. And with their judgements come assumptions, and interferring and demoralising. My fear is that some ignorant person will undermine all the positiveness we have encouraged, pushed and persistently re-inforced in my child. The pack mentality people - "seen one, seen 'em all."

You know what? EVERY ONE OF THESE KIDS ARE INDIVIDUALS. They can no more be boxed or grouped or even taught or dealt with the same way than ANY OTHER CHILD. They are unique - every single one of them.

Do not assume because you read or train or know Joe Blow's second cousin down the road who may be ASD, or was it ADD... DO NOT DARE TO PRESUME YOU KNOW EVERY KID WITH AN ASD DIAGNOSIS. Because you do not. I do not. What works for my child could well not be the way for another, in fact it may be the worst thing for another. All I can do is tell you about my son, how he is, what helps him, and maybe, just maybe you can take some of it and see if it works for another. Same as I listen and learn and take from others what I think will work for my child. But there is also a lot I disregard because it will not.


All I can say to you all is to follow your gut. Whatever your mother/father/sibling instinct tells you to do - go with it.

We did. Or more to the point, I did and the rest just trusted me. I fought against specialists, educators, other parents, you name them, I probably pissed them off.

And it worked. It helped him - MY CHILD - and in some small way contributed to the glorious young man in our lives today.

Seriously - who else will know these amazing kids as well as their own families, eh?

Off soapbox.

Oh, and I'll give the last word to my glorious child.

Four years old and seriously aware of how others treated him he had a dream, a bad dream, a nightmare: "Mum, I was in this box and I didn't fit but the teacher kept pushing me in and closing the top. But I didn't fit!"

The Road Less Travelled 3 - The Tale of a Boy & his Journey into Autismness

This series of blog posts is also available on Autism Sucks

Part 3

When our first child was born, we were the same as most new parents: filled with love, hope, joy and dreams for our son. Little did we know that God had planned a very different journey for us. Far from the smooth highway we veered onto the rugged back roads and broken dusty trails. We are now at the third stage of our expedition, the crucial stage. Hormones can be the blockage that derails the train, and we must work towards helping him plow on as best we can.

The first part of the section is fact. The second part, in blue italics, contains the less rational emotional journey.

The School Maintenance Years Eight to Twelve Years of Age:

• Grade 2. New year, new teacher. I am astonished to find out they do not communicate with the teacher from the previous year. They do not want to prejudice or allow others' opinions to colour their judgement of a child. This year again, we have to explain that although he appears to tune out, ask him a question and he will amaze you with what he has absorbed and understood. We are grateful to have retained the same aides as the previous year, allowing for some continuity within the class. We write poetry as part of his speech therapy. We arrange an appointment with the Minds and Hearts clinic, an affiliate of Tony Attwood's clinic in Brisbane. Talking to the AVT there seems to be little doubt he falls under Asperger Syndrome, but we want to be sure. He is thriving academically with no sign of the intellectual impairment suggested. We meet with the psychologist that runs the clinic, Michelle Garnett. After many tests she confirms what we knew in our hearts, he has AS. Boy 1 has impressed her with his knowledge and understanding of emotions. The only one he cannot understand is deception. I am not surprised as he believes in the good in most. She asks if they can use him as a case study for their conferences, to show what one can achieve if you do it right. Again, positive feedback. We ARE doing this right. He tells her she is very beautiful as we leave.  How can they not talk? Surely, when this child is classified under Autism Spectrum Disorder it is crazy not to? These children thrive on routine and structure, each one has different triggers, individual sensory issues, each is unique. Why would you put the child AND the class as well as yourself through weeks of hell when it can be avoided? Dear God, this system is flawed. It soon becomes obvious she initially assumed ASD meant an II as well. He soon rectifies that opinion, but still she does nothing to challenge or stimulate him. This is going to be a coasting year, not the first, certainly won't be the last. Instead he reads his encyclopaedias at home, and researches things of interest, he plays his educational computer games. His meltdowns are less. The change of diagnosis is not recognised by the school, but we knew it would not be. They do not think Tony Attwood is an acceptable expert, and yet the rest of the world outside of Qld Ed does. To me this says more about the school system in this state than it does about Attwood.
• Grade 3. Another new teacher, same aides, and the job share teacher is his one from Grade 1. Again we start from scratch but it is soon clear that this teacher has expectations. This teacher has ideas. This teacher is open to any suggestions or advice I can give. Hooray - this will be our year of success and progress. She calls him the Little Professor. She is one of those rarities - a born teacher. Tough, loud, authoritarian, compassionate. He blossoms and thrives. And goes on his first solo playdate whilst his mother sits at home counting the minutes and dreading the phone ringing. It goes well. He makes another new friend when his other mate repeats Grade 2. He tends to have intense friendships which are not always smooth sailing. His obsessiveness can be hard for other kids to cope with. It is even harder when the friend also tends towards the obsessive as this new one does. We lose our second aide, the first leaving due to pregnancy. We have a new lady, but do not replace the two-day contract. Our wonderful AVT is replaced by another. One who is a textbook reader, with no idea about the individuality of the child. One who wants to come in and change what has worked wonderfully for three years. We, the parents, and the two teachers batten down the hatches and refuse to let her stuff it all up. At this point he is coping well with three days a week with an aide. The principal continues to support us. I now call him friend as he has done so much and pushed so many boundaries for our child. I am so much more relaxed this year as I know these educational professionals have my son, as an individual with Asperger Syndrome, and what is in his best interest at heart more than ever before. On one of his bad days he climbs up on the fence at the top of a two-metre drop and threatens to kill himself. Terrifying. I (after defusing him, talking it out and making sure it was a cry for help not an absolute attempt at suicide) wait till he is asleep then drink a bottle of wine. Days later I learn his teacher had done the same thing, sitting crying for my son and his desperation. Luckily it was a Friday. To think she cared so much that we were not that different in our depth of reaction...  This is our year of big jumps forwards and I am proud. Sadly we already know next year will be the downturn. We increase our aide days back up to five to buffer the child, not help the teacher this time.
• Grade 4, the year of hell. We knew it would be bad. We had no idea how bad. Not only did we have an inadequate teacher but it was also the year bullying did untold damage and the SN teacher took control and undid years of work. It was the year of regression and disintegration. The year of anger, pain and fear. The year I wonder if we have lost the battle. We found a new psychologist, a male who specialises in ASD, and initially is part of the Minds and Hearts group. Initially the aim was to build a professional relationship to be ready when Boy 1 launched into puberty, but now it is a lifeline for us. It is also the first year he goes away to school camp, accompanied by Big Boy. Not a great success, but an achievement none the less. I knew it would be bad. I just knew it. SHE was the one who told us our second child was ASD, then ADHD, anything to cover her inadequacies. Our paed made the comment that the teacher was the one with issues, not the child. No matter what we say it all comes down to a power play. She goes against our advice purely to show she can. Boy 1 plays her like a violin, acting the poor little autistic child to the hilt. She responds with hugs, and lets him do whatever he feels he wants to, which is very little. Meltdowns become a regular daily occurrence as he gets to leave the classroom as soon as he launches one. I later find out she has told him I would homeschool him if he cannot cope in the class. Offering him his greatest wish - to be home with me. As his behaviour and control spiral downwards, she makes the ultimate mistake. When I am ill, Big Boy is away with a friend fighting for their life, she sits me down and suggests he does not come for full days, and not every day. My God, she has underestimated me once again. I go straight to the principal after making it clear who is the inadequate one in the equation, and that she has created this situation and by hell, she shall deal with it. Boy 1 and I spend the evening cooking and sobbing. Now he knows he would be going to a new school, without his peers and friends, without his brother, without his aides. Not the dream but a nightmare for him. The hard thing is he now has to reign back in the behaviour, he has to take back control, he has to step up once more, but it is all the harder this time as he has let it all fall apart and must re-learn and re-use all those years of emotional training and the tools he was taught. Slowly, with no help from the teacher, he turns it around. The strength of my son has me in awe yet again. His wonderful psych is there every small, tentative step of the way.
• Grade 5, the year of recovery. An all boy class with a male teacher. It works well. The teacher knows he has a lot of ground to make up. With all the children from my son's class of the year before. Boy 1 is lucky, he is a very bright child, others have not fared so well and struggle to catch up. This year he and I go to camp, with Boy 2 as well. An outstanding success as he pushes well beyond his boundaries and comfort zone. He starts guitar, and loves it. He thrives in the black and white world of a strict male teacher. He copes so well, and understands the boundaries in this testosterone driven classroom, even when he meltsdown he just takes 5 outside the door, gathers himself up and returns to his work. He has grown up so much, taking a lot more personal responsibility as I look after my sick mother early in the year. We have a new SN teacher, the old one returned but on a job share basis. I refused to have her work with my child after the debacle last year. We also have a new principal and must tread carefully until we know her. Things are looking up after the prior year of anguish.
• Grade 6, the here and now. The year of growing up. He is twelve, and puberty is breathing hot and heavy on our heels. I am scared, my once loving, reasonable child is being replaced by a belligerant pre-teen. One who is sullen and uncommunicative. The child who would never shut up is now becoming morose and secretive. Most days I am able to talk, joke and love him out of it. We realise the pressure is on at school. The pace of the composite 6/7 class is frenetic - all the kids are feeling it. It is almost like high school, in fact they say the kids who come out of these two classes are the most prepared for secondary school. But that does not help his anxiety and stress levels now. It does not help my concerns and doubts. Have we mis-calculated? Will this be his undoing, not his making? Will he burn out before he even looks at getting out of Primary school? We are in the unknown, the emotional quicksand and all we can do is put one exhausted foot in front of the other and hope we don't sink. I am tired. We are all so very tired. But we have no choice but to continue. The amount of homework and assignments is incredible. The late nights are not helping but it has to be done. His anxiety is crippling his ability, I have to be with him counselling, defusing, encouraging him to complete tasks. Each piece takes three times longer than it would if he would stop the moaning, the delaying, the prcrastinating. Tempers are frayed as my nights are spent on him. I am not sleeping.

This is where we stand today. But underlying all of these years in autism world is the pressure of being his main focus, the only one who can talk him down or reason with him when he is in full meltdown. He slept in bed with me until he was nine. I had little personal space or time, especially when he was younger and am always aware that I need to be contactable at all times. Every phone call grabs at my heart until I realise it is not the school or the playdate parent. It exhausts me and I often wonder what would happen if I was not here. But I am and can only believe I will be for years to come. Because this is a new battle now. Hormones and teenage angst will be entering into the ASD arena any day, and we must be prepared. As prepared as any parent can be against an unseen, unknown foe.

FYBF - Light It Up Blue & Why The Hell Do I do This?

Tonight is the school disco. Today is Light It Up Blue day for Autism Awareness.  Pretty apt mix really. Wonder if the kids would complain if all the disco lighting was various shades of blue, hmmm? I'm on the glowstick stall after swearing "no more" last year. What can I say, I'm a control freak who can't stand by and watch without twitching. And I happen to like and respect the 2011 committee members too much to stand idly by and not offer to help. So instead of just lighting it up blue we'll be lighting it up green and pink and ornage and yellow too!

For FYBF this fine Friday, after the discovery of the impact the poetry of one little boy has made (even if copyright liberties were taken by others), I have renewed hope in the power of words. So I am adding a few of my own in celebration of ASD awareness.

April 1st  - Light It Up Blue Day, in preparation for
World Autism Awareness Day on Saturday April 2nd. Landmarks around the world will be a beautiful blue in support of this important message.

It is the 4th WAAD. Statistics now show 1 in 100 children are affected by ASD. If you don't know someone on the autism spectrum you are the exception.

I won't be sharing his poem today (learnt my lesson well), but rather some of my own. From a while back now, but the second is so apt as our lives are now.

Ignorance

Look not into my eyes for fear

Unknown things just not clear

Someone holds me very dear

Ignorance keeps pain so near

Look not into my heart so pure

Never tell me you want a cure

I am unique, that’s my allure

Angry people please be fewer

Look not into my tears so loud

I’m not just someone in the crowd

It could be your son being cowered

My Mum says she’s always proud

Walk Before You Run

You have to crawl before you walk,
Walk before you run
But now you need to spread your wings and fly.

I always held your hand before
Locked it tight in mine
But now you have to soar alone so high

The time is now upon us
To loosen up the ties
For all to let you show the world yourself

For I am just a mother
Who must learn to stand aside
And not wrap you up and give you so much help

So now your running strong my son
We truly are so proud
The boy you are will be such a great man

But just remember when you race my son,
And pass the blurry faces my son,
Please still reach out and gently touch my hand.

Happy FYBF. Spread the message. Please.
 
(Will be back to link up when linky up).  

Kathy Lette, Asperger Syndrome and my New Girl Crush...

Yes, back after my early morning brain fart moment. Slowly crawling out of sooky la-la land back to my normal snark world.


I WAS going to write a really heartfelt review of the article in this month’s Australian Women’s Weekly about Kathy Lette and her son, but instead I am going to write something far more appropriate considering the target of my latest stalking obsession girl-crush.

Seven Reasons Why Kathy Lette Should Really Pick Me as her New BFF:

1. And this is indeed Number One! I not only have an intravenous drip to a bourbon bag, I also at numerous times have been hooked up to wine, liquers, port and even, under really strained circumstances, the odd cocktail. But here is the heart of the reason you need me Kat... the real why of this point. Hell girlfriend, ain't anyone ever told you that GIN and VODKA are depressants? The last paragraph of her interview mentions gin is her lifeline of choice. Do you really think you need something that aids the darkness? Like fuck you do! Alcohol is your therapy, remember the ASD Mummas' code: wine for the whine. Man, whomever was keeping this bestie spot warm for me seriously fell down on the job. Kathy, you NEED me. You know it.
2. We are on the same page with those ASD dilemmas. So much so that if I didn't know better I'd swear you've been reading my written works all these long years. In fact, reading your interview was a little worrying, as many of the examples, phrases, attitudes and expressions were uncannily similar to much I have vomited purged articulated in my blog, on parenting sites, and in published pieces. Okay, one published piece. Well... one internet competition published entry if you want to be specific. But a person of lesser self confidence could be threatened by this apparent coincidence. I am not. It just shows to me how well we fit as besties, m'kay? And who would ever accuse their No. 1 girlfriend of plagiarism anyway. That would just be nasty.
3. Puberty Blues. Whilst you may have been referring to some south Sydney beach culture, my youth on the Mid North Coast of NSW was eerily similar. Hey, I have been in the front of a shaggin' wagon only to overhear my bestie and her paramour discussing "is it in yet?" Gag. Also, the term "going slops" was not an unheard expression echoing from the sandhills at those random beach parties. And I usually was the one defending, dragging away, fighting for those who did not have the self-respect to say no. Not even going to mention the brawl at the 24 hour servo on the night of my 21st which started from my guns-blazing, white-horse charging, heroine to the rescue bravado, okay? But believe me, those puberty novel years? I lived it. 
4. Photo opportunities and the great publicity machine! We look good together, need I say more? Oh... I do? We both have that certain something, call it chutzpah or spunk, passion or fire. Man, we are so hot from the inside out, it sizzles! Just check out this photo - it works, don't you think? You may have more polish and style, but I bring a certain something to the table too. And I can honestly say without a doubt, in a battle of wits and one-liners I am more than capable of holding my own. Especially after being hooked up to the lifeline for a bit (refer reason 1).



Handbag, Kathy, Madmother

5. Age. Not much separating us here my lovely. You are a 1958 chick, I'm a 1963 babe. Both baby boomers, both holding those years well. Refer photo above. What better for a bestie, than someone who gets the jokes, remembers the culture, can relate on the same wave-length. And why would you want someone NOT of our generation, who you waste much time in lengthy explanation to. Becomes very tedious. Whereas moi - well, I have no doubt that frequent hilarity will be had from merely a look, no words necessary when you are on the same wavelength!
6. We share a love of our rainbow swirl sons! Boy 1 wrote this when he was 7. Screw Black & White - only looks good on zebras. Or me. Actually black and white really suits me... as does red. But my son is technicolour, even though his opinions may be black and white - HE is not. And apparently neither is yours, Kat. In fact, he sounds very much similar to Boy 1 and I do think as you and I are heading into this bestie thing, your boy should seriously, as the older, 21, think about mentoring my younger man. Just as Boy 1 does for those younger than he. All together now - AWWWWWW. Bucket please.




2010 - Madmother Derby Dame


7. Roller Derby. Who doesn't want a roller derby chick as their bestie? Come ON! Great street cred, whole new cache of story ideas, and I can madmother splat any other stalkers crazies. Sorta like a bodyguard and bestie all rolled into one (get it... rolled? Bahahaha. Okay. Not funny. Little too desperate maybe?). And don't tell me you never picked wheels over heels back in the 70's, K. We both know better! Oh, and I can even sub as a waitress for dinner parties and the like! Cool, huh?

I was going to continue, but as this post is getting pretty damn long I'll stop here. Because we both know this is inevitable, eh K? I could use same lamo terms like two peas in a pod, or sister's under the skin, but that would be tragic.
And that, I am not... merely a

Imaginary Friends (Or I See Unreal People)

a

Most of us who write or contribute on internet forums and blogs will at some point or another make the ghastly mistake of mentioning something to irl (in real life) friends or family. The conversation may go like this:
Friend: "My friend told me that there is a new therapy for kids with ASD, you inject them with sheep's liver and it clings to the heavy metals and helps purge them from their bodies and will cure them."
MM: "Ah, yes I was discussing this with cybermom just yesterday."
Friend: "Cybermom? That is a cute nickname, do you know her from school?"
MM: "No, we are on a parenting site together, I've known her for a few years now. She is really clued into all the cutting edge developments with ASD. I tend to ask her about anything new I hear on the grapevine."
Friend: "Ooooh. One of your imaginary friends *cue condescending little laugh*. Not a real friend. I've always found people on the internet to be a little strange, don't you?"
MM: "No. Do you think I'm weird?"

*Crickets chirrup in the otherwise dead silence

or the longest conversational pause in history*

Friend makes lamo excuse and leaves, quickly.

I have discussed before how I have made some wonderful friends here in internet world. You may have read of the fantastic night I had a couple of months ago with a friend I had known or known of for several years but had never before spoken to or met in the flesh. She only lives a little away, and I would class her as a new but good friend. Since our initial foray (and after bumping into her at the local shopping centre once) we have now caught up a couple more times, the most recent being last weekend at a local winery. Who leads who astray I am not sure, but I do know we laugh a lot when we are together, and never have those awkward silences that sometimes litter conversations with new people in your life.

Yes, I am the old fat one on the left...

Personally, I think she looks pretty good for an imaginary friend, don't you?

I also have another friend of many years standing. We met irl for the first time in 2007. We have since kept in constant contact (she lives interstate, though I am working on changing that), and I would class her as a very close friend. So close we would happily take on her son for life, should she need us to do so. She has stayed with us, with her wonderful son, and we really click. Our thoughts on our boys, very close in age, and how the world treats them, is on a par. I must admit though, she is the more rational one in on-line arguments and tends to allow reason rather than emotion to flow in her posts. I hope she moves here as she wishes, and we can support each other on a constant physical basis, rather than emotional support over the miles (not to belittle how much it means to have this).

Then there was the amazing coincidence when I stumbled across an irl Mum at our little local school whose photo I recognised in a comment on a blog I follow. After much deliberation I approached her, and have begun to get to know her a little more each time our paths cross. She is a lovely person, and funnily, is a close friend of one of my close friends. Her busy life has taken her away from blog world for a while, but I am hoping it is not for too much longer.

 *Hi Waffler! You are missed!*

And of course I now add the wonderful Ro onto this crossover list. Although she too is many miles away, I can see this long-distance friendship will evolve over phone lines, and hopefully into face to face in the not too distant future.

In  fact, you know what? I think it is my internet connections who have gotten me through the dark days, it is my on-line friends who are my safe haven, the place where I come when life is too damn hard, and my stupid pride won't allow me to let others in. It is you bunch of people commenting, cyberholding my hand, and invisibly patting me on the back as I brokenly spill my guts, who pull me back from the brink time after time. 

So, to all those nay-sayers who think these are not real friendships. You are right. Seriously, you are.

These are unreal friendships! The best there is.

Our name is legion for we are many...

I should be working on my Weekend Grateful or Weekend Rewind link ups. No, actually I should be asleep considering it is just after 3am in the morning, but that is a whole 'nother post.

Instead I am sitting here pondering the sheer magnitude of autism spectrum disorder. Otherwise known as ASD. It is a spectrum for a reason. The incredibly large range of diagnosis and the massive scope of this disorder is, to most, unfathomable. The term Autism Spectrum Disorder is the broad umbrella (at this point in time, until the DSM V comes into play in 2013) which covers such labels as:

• Autism Disorder - this covers what used to be termed classic autism or Kanners autism as well as a variety of behaviours and characteristics. Oh, that's another thing. The terms are constantly changing, as if this world on the spectrum was not confusing enough.
• Asperger's Disorder - otherwise known as Asperger Syndrome. Apparently this is going to vanish *poof* when the DSM-V is introduced. Great. Just great. The condition my son associates with himself, the one we have worked years on becoming an accepted part of his being, the identifying factor that forms a part of his self-belief, identification and confidence is no longer to be recognised. He will just be autistic, fancy that. Or don't. More to the point, DON'T.
• PDD - NOS - Pervasive Development Disorder - Not Otherwise Specified. I call this the limbo one. It is given in many cases in the early days when there is obviously something going on, but it is just not clear what. When help is needed, but the direction of the child's ASD has not become obvious. This is the one we were given in the beginning.

In the old days, when we first began this rollercoaster (around 2002/3) there were two other conditions under this broad cover:

• Rett's Syndrome
• Angelman Syndrome

Both lesser known genetic disorders with very serious and life-long implications. Apparently they no longer come under this ever changing cover.

This line of thought has been triggered by a heart-wrenching article written by a mum I am on several support sites with. The incredibly articulate Kirsty wrote this post which was published on the MammaMia blog.

After reading this, crying for a bit, then thinking on it, I started down memory lane. Our journey is unique to us. Whilst we have travelled a very different path to Kirsty, it has been no less painful, raw. (Refer Road Less Travelled) I think this is where a lot of people make assumptions, that Asperger Syndrome is a lighter sentence. It is not, nor is it a life sentence. It is a part of who he is, and always will be. His struggles are no less heartbreaking than those of others on the spectrum. Our hopes are no less valid. Our pain no less excrutiating at times.

People in my life (real and online) have commented, comparing us to others... you know the "Oh, but look at so and so's situation. You are so much better off than they are, you should be grateful." My answer is and always will be, "Yes, I feel for them. I can offer sympathy, compassion and to some degree, empathy. But it is not my life. It is not my child. It does not make our journey any less difficult, it is does not make the fear, pain and fight we experience any less valid."  Let's face it, EVERY EXPERIENCE of every parent in this complicated world is VALID. It is just that those of parents facing the challenges on the Autism Spectrum resonate far more deeply with me, for they are the battles I have fought, be it to differing degrees.

Our name IS legion, for we are many. It never fails to surprise me, just how many. I talk. A lot. I talk to people I encounter in every part of my life. I talk as much as I blog. And the huge number of people who confide in me that they too have a child, sibling, relative, friend or student on the spectrum... it takes my breath away.

Perhaps this is why when a mother such as Kirsty writes such an honest, powerful, evocative piece, it has a big impact. Read the comments that follow, the multitude of "I hear ya sista"s.

It is not 3am anymore. It is after 9. I can hear my two boys playing together, laughing, arguing, being typical brothers.

Boys 2 & 1 - 2004

I guess this has turned into my Weekend Grateful. Kirsty is right, he is so very easy to love. It is the easy bit. And as I listen to my boys laughter, I am so very grateful for both of them, as unique and quirky and boundary pushing and mind blowing as they are. As Maxabella says... it's all about perspective.

Blatant Promotion of Fundraiser!

Don't you just hate it when bloggers do this? Blatantly promote something of interest/benefit to them and theirs?

Well, tough. Cause I am doing it anyway and it is for a good cause. You know how my last couple of posts have been from ASD world, where mothers wear self-centred t-shirts, and others claim to push the boundaries of what is acceptable in the special needs world? No? Go back and read it then. Well, anyway, I have a compatriot, a cyber friend from this world. A congenial companion on the rollercoaster ride of autism. A soul mate of sorts, who thinks outside the square and pushes those boundaries way out.

She is a bad mamma jamma, advocating, educating and doing far more good in the world than a Madmother ever could.

Well Kirsten, my friend, is running in the City 2 Surf on August 14th. She is running for her daughter, my son, and the many who are nameless in the ASD world. She is running to help give these kids a future. She is running for the ones who need that extra help to reach their full potential, the ones who find it harder in this fast world, the ones who struggle if they don't have people to aid them in their journey.

She is running for this child...

And this one...

And so many others. So please, go to her page here and pledge or donate. As little or as much as you can. Because intervention can mean the difference between joy and pain. And every child deserves joy in their lives.

The Beautiful Words of Wisdom from a Deepak Boy.

Driving down the mountain to pick up Boy's best mate C for a few days, I asked my oldest what he would say about Asperger Syndrome if he was trying to explain it to a room full of people. Now, you need to remember he is only 13 and still finding his path on this journey. But I was curious, after reading another blog and discussion on the topic, as to exactly what he would say.

Boy 1 today - Copyright Madmother

"It is embracing your own kind of normal" he begins, "Whilst there are things it makes me struggle with, it also gives me a different outlook on the world and uniqueness creates greatness." At this point I am struggling not to tear up.
I ask him what would he do to explain it to people who don't know anything about Asperger Syndrome, to pretend he is a motivational speaker (which he dreams of), in a big hall with lots of people who have no idea about ASD.

He is quiet for a little. I ask him if it is too hard... "No, just unexpected and I need to think about my answer."

He is silent for a moment longer.

"Asperger Syndrome means you are different, not bad or good, it just means you are different. You stand out from the rest. You should enjoy it because it means you are a unique individual. It also means those hyper-senses can be used to your advantage.
Keep an open mind and you may learn new things. I would tell them about the things I found hard when I was younger, like noises and changes, and writing. I would also explain that these things are less hard now I am older. They also need to think how they are different and how it would make them feel if people teased them or tried to make them feel bad. Maybe if they talked to or asked us kids on the spectrum they would find out we like the same things and can be friends. Everybody needs friends. I am really lucky with my friends.

Do you think that would be good Mum?"

Yes, my son I think that would be very good. If only we could teach everyone to embrace the unique, wouldn't the world be a wonderful place? I adore my own little Deepak, he makes this world a positive place.

On this same note, a friend on Facebook just this minute sent me this link, ties in nicely methinks (though about ADD, it also resonates for ASD).

VIVE LA DIFFERENCE!

Swings and Roundabouts

I have recently added a couple of new finds to my blog roll. I seem to go in cycles: you know... Full tilt, riding that white pony up and down on the ASD roundabout, researching, reading, being proactive; to falling in a denial heap in the silver coach section, sitting on the bench unable to move, discuss or even mention *shudder* Asperger Syndrome. It is quickly approaching a decade of being on this ride, and even the strongest of us end up with motion sickness after this long. Round and round, up and down, faster, slower, spinning ground...

Ah, but back to my finds. I follow a wonderfully informative, helpful blog,

 The Thinking Person's Guide To Autism

and it is through this blog and its myriad of contributors that I find many of my new haunts. It is via a wonderful link to an open letter that I have stumbled onto Pia's blog:

the crack and the light . She writes so eloquantly of the emotions and battles we parents of the special ones face. I am reminded of how the fire can burn from a mother's love and quest for answers and help. Memories of the fight we have waged for ten long years are re-ignited. Don't get me wrong, I have not forgotten the campaign nor abandoned my role as his advocate. It is just sometimes the heat is not as intense, and other struggles take priority. Sometimes I cannot even read of another's ASD journey, sometimes I am tired.

Sometimes it is good to be reminded of how it was. Sometimes it is necessary for us to now see how it is today. Go, have a read, it is pretty powerful stuff.

One for the DADS of ASD kids...

One of the blogs I follow is a writer and dad of a son who has ASD. This is a great link for the men in the family who need the support just as much as us mums, but don't like to reach out. For you, guys: Kicking and Screaming by Brian Patrick Tracey.

The Unresolved.

This is where it gets hard. I know I have a massive amount of unresolved issues with grief. When my sister died my parents lost themselves in their bereavement, and in my almost fifteen year old eyes I had to hold it all together for them. The sight of my six foot tall Dad sobbing in his five foot nothing sister's arms on Christmas morning destroyed my belief in the solid foundations of my life. Somewhere deep inside I feel I did not do enough, I should have made it easier for them. I should have been able to lessen the pain and devastation. Logically, I know I needed help, but I was left to cope. Probably because I appeared to do it so well, a trait I still have today. Reading some of my teenage poetry from back then is quite confronting. How very close to the precipice I was. I do not know why some of the other adults in my life could not see it, the scars are burned in my soul, deep and charred even today. When I fell into the black hole of depression at the time Wise Woman 1 was so very ill, I finally requested the help of a professional. A psychologist.

Well, what a major cock up, to say the least. Sad when you realise you are smarter than the therapist you are looking to for help. She kept focusing on so-called unresolved issues with Boy 1's ASD - something I had dealt with and resolved many years ago - and not my problems with grief. I was honest and quite blunt in my appointments, and yet she still did not seem to understand the situation. If I had been in a better place I would have sort out someone else, but did not have the emotional energy at that time to do so. Though it did scare the shit out of her when she gave in to my requests to screen me for depression. She had NO idea how severe it was until she reviewed that little piece of paper. And then her bandaid solution was to get me onto anti-depressives, not to delve into the underlying catalystic emotions. Nothing resolved here I sit today: same issues, same problems.

Loss is not something I cope with. Upon hearing of a death I am thrown head first into the feelings of old, that terrible feeling of helplessness, the despair, the frustration even anger. And the pain, the unrelenting pain... I think it is why I want to help so desperately, yet in most cases am unable due to distance, other circumstances or even the fact that it really would be intrusive at such a terrible time. It is why, when people in my real life are the victims of tragedy, I always step up and ask: "How can I help?" or if I know them well I do whatever I can without asking them to think. I am not trying to big note myself, it is a selfish reaction not altruistic at all. I do it because in some strange way it helps me cope with MY grief. I am doing something, and even though I cannot change circumstances and fix what is wrong, I can sometimes assist in some small way. I am no longer the powerless child frantically trying to hold her shattered family together.

Sorry for the me post, I just needed to get it out.