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!

But He's Doing So Well!

He seems so normal... He is normal. Normal for a kid on the autism spectrum. What is normal, anyway? Or should I ask how you personally define normal?

He is doing so well. Yes, yes he is. But do you understand the little things we do every day to keep him on track? The things nobody but myself, and maybe his Dad and brother would ever, EVER remember to do?

You should be proud of him. Oh, I am, believe me. Especially as I know the effort it takes both him and us to keep the act up. For it is an act, you know. There are things that are a part of his nature, a part of the syndrome, that just would not be acceptable in this society.

I couldn't do what you do. Um, if it was your kid you could. You would. You don't get the choice.

But he's doing SO well! Do you know I make him laugh? That constantly I make little jokes, or smart comments, I twist and mock and cajole until the mirth explodes and drowns the anxiety in endorphins? Did you know sometimes he is so overwhelmed with the pressure of life that he hits his head and pulls his hair screaming "I can't do this anymore!" Do you know a lot of the time I want to join in? Do you know that the stress can overwhelm every part of his incredible mind, and stunt that beautiful brain? That sometimes I need to go in, soothe, talk, oil those mental cogs with silliness until the frozen fear melts and allows the intelligence to shine once more?

Do you know I worry endlessly about what would happen if I was not here? Who would he turn to, who could take away the pain, who could bring out the positives whilst minimising the negatives? Who knows him through to the truth of his soul and pushes the perfect buttons to make it right?

Who saves him from falling if I am gone?

Who?

Who would see the beauty and the endless potential of a boy who soars into worlds unseen by others all within the mind of mayhem?

But he's doing so well...

Fresh Horses - Words for Eden

Over at Edenland there is a new linky up and running (not new,new, but her new one for this week). The question or theme: Words. You are at a party, step up to the open mic. What would you choose, to read out at this fictional party?



For me this is the one. It is the song that makes me cry, it is the song I sing to my boys when they are troubled, it is the way I feel about motherhood as my heart bursts with the love I have for my children.

Sometime, someday, somewhere... they will "Crash and Burn". And on that day I will be there, I wil catch them and hold them tight within my arms and heart until those bruises heal and their souls are complete and strong once more.

Crash & Burn

~Savage Garden~



When you feel all alone

And the world has turned its back on you

Give me a moment please to tame your wild wild heart

I know you feel like the walls are closing in on you

It's hard to find relief and people can be so cold

When darkness is upon your door and you feel like you can't take anymore

 

Let me be the one you call

If you jump I'll break your fall

Lift you up and fly away with you into the night

If you need to fall apart

I can mend a broken heart

If you need to crash then crash and burn

You're not alone

When you feel all alone

And a loyal friend is hard to find

You're caught in a one way street

With the monsters in your head

When hopes and dreams are far away and

You feel like you can't face the day

Let me be the one you call

If you jump I'll break your fall

Lift you up and fly away with you into the night

If you need to fall apart

I can mend a broken heart

If you need to crash then crash and burn

You're not alone

'Cause there has always been heartache and pain

And when it's over you'll breathe again

You'll breath again

When you feel all alone

And the world has turned its back on you

Give me a moment please

To tame your wild wild heart

Let me be the one you call

If you jump I'll break your fall

Lift you up and fly away with you into the night

If you need to fall apart

I can mend a broken heart

If you need to crash then crash and burn

You're not alone

Never, never alone whilst I have one last breath within this body.



 

Knock Knock, Penny, Knock Knock... FYBF

Boy 1: 2005 - First day of school.

We are coming to the end of the final term of the final year of his Primary school years. The child that was is now the young man that is. For those of you who have followed our story you will know what an incredible difference these years have wrought.

I am bursting with pride at the person before me. This year I had asked him and encouraged him to enter one of the more popular public speaking programs in our district. I said "His was a story that should be told... maybe he could speak of what his school years had done for him? Wouldn't that be a wonderful thing for his teachers to hear?"

He refused. "Why?" I asked, thinking of myself basking in his reflected light.

I must admit I was influenced by another who had done something similar a few years back, though I knew her story had been written not by herself.

"Because they see me everyday and know what it has meant to me."

BAZINGA!

This is the child who has written an illustrated children's book, this is the boy who is happy to market and talk and educate in any public arena to help those younger on the spectrum and to assist those around them to understand and support those kids.

He knew perfectly well my request was not born of my usual educate, advocate, demonstrate philosophy, but rather of a "Ner, ner" motivation. Not to our teachers, but to others who had not believed, who had belittled and made our my life difficult.

He loves me, he loves so very deeply, and yes, he teaches me to be a better person. He is right, they see him every day and realise what an impact they have had on this once lost, little boy who has blossomed into this gorgeous, strong young man.

I see less and less of Sheldon, and more and more of my Deepak boy emerging.

Boy 1: 23/11/11.

Thank you my son, for taking me with you on this incredible journey that is your life.

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.

Motherhood & The Things We Take For Granted - Weekend Grateful

I believe everything happens for a reason.

The painful implosion of a friendship - necessary to give you much needed space to realise how toxic it was in the first place.

The financial struggles of day to day life - required so when these times ease you appreciate it so much more.

The agony of loss - to remember the joy of having them in your life at all.

The fear of a mother. A reminder to make you realise the importance of appreciating what you still have, not drowning in what you have lost.

This Sunday is Mother's Day here in Australia. A day to celebrate the joy of motherhood, to spoil those that deserve it. It should be at least once a month as far as I am concerned. Why? Because we Mums are absolutely fricken awesome! Because we Mums are NEVER off duty. Because we Mums support our children unconditionally and are ourselves the last to be supported in a lot of situations.

This Sunday is my first Mother's Day without my

 Wise Woman. 

You can imagine how I have been feeling about that one.  As the date approached I felt physically ill at the thought of being without her, and asked Big Boy to please arrange for us to be away from here for the day. I could not bear to think of being home on this day without her.

Now, as I said I believe things happen for a reason. I also believe my beautiful mother is somewhere using her strength, persuasiveness and sheer obstinance to continue to look out for me and my family. Things have happened since she left this world, things that have no other explanation than her pulling out the big guns, and I continually feel her love and strength protecting and supporting me.

My Mum. The only person on this earth who could keep me in line, the only one to calm my raging anger, the sane voice of reason when I was threatening dire retribution to any who crossed me, the one who pulled me into line and made me look at things from a more realistic and logical direction.

The centre of our family - October 1996

This week I had a very sick child. My second son. I won't go into details, suffice to say he had the medical profession and his parents totally baffled. And scared. Terrified in fact.

Obviously, after nearly a week, he is on the road to recovery. I would not be posting otherwise.

We still have no idea what this was, but I am so incredibly grateful he is getting better. And somewhere in the back of my mind is the thought that maybe it was a Wise Woman kick up the proverbial... A reminder to make you realise the importance of appreciating what you still have, not drowning in what you have lost.

Thanks Mum. I am now looking forward to tomorrow without any shadows. Well, maybe only a little one, but you wouldn't expect me not to miss you at all, would you...
 
 
This is my Weekend Grateful.




 
 
 

Uncontactable. And Sunday Sessions.

The bane of a parent's life.

The night before school goes back frantic book covering. The bubbles and wrinkles and unintentionable covering of oneself. I am certain there must be a condition called contactitis: fear of failure in performance of covering treasured childrens' school books. Symptons: air bubbles, wrinkles, hair or dust under final product, small cuts in plastic to free air, inability to free hands from adhesive covers, constant cursing under breath. Excessive perspiration at times.

I think it was invented by teachers for revenge. I know it must have been created in the first place by a man, for what woman would ever design such a user-unfriendly product as contact?

Aargh...

 

Time for a Sunday Session methinks. Pop on over to Thea's for the blurb.

Here's my oldie:

Huey Lewis - Stuck on You

And my newie:

Hey boys. You must know how much ya mumma loves you after this. Contact. Arrgh. Oh the pain.

The Brink

He stands on the edge of manhood, no longer a child, not yet a man, but when he lays sleeping beside me in the big bed he is once more my baby. At twelve going on thirteen he is really a little old to be climbing into my bed, yet how do you refuse in the wee hours of the morning as he stands softly crying in fear after a bad nightmare? His mind never stops. The good nights are when the endlessly working brain conjurs up images of magic and joy, heroes and fun. The bad nights are terrifying as that boundless imagination produces unheard of terrors. But when he lays sleeping, his nose snuggled into my neck as it has since he was tiny, the trackmarks of his tears and the look of unbridled fear vanish. And he sleeps the sleep of the pure of heart.

Awake he looks like a teenager. Asleep he still retains the innocence of a little boy. It is in these dark hours of the night that I often allow myself to look deeper. I question how much of who he is and his behaviours tie into the Asperger Syndrome, and what portion is that of any pre-teen hitting the puberty era? He is my first born, and so I have no precident to follow, no level to compare. It is in the dim light before dawn that I worry, and wonder about the future, his future, and the battles we may face tomorrow, and the next day, and the one after...

But then he'll stir, and half asleep he'll murmer contentedly "I love you Mum." And I know we will get through whatever the new day brings. There is no choice.

Watch This!

Another ASD mum found this. It is perfect as is my son. It is just the other morons in the world I cannot tolerate. Still trying to breathe.

Memoir Monday - Wandering with a Wise Woman

After a couple of more serious Memoir Monday's I am reverting back to type... And so here is the tale of the Wise Woman and Madmother Other Worldy Adventure.

For those who do not know Wise Woman is my now 90 year old mother, the matriarch of the Madmother family. In 1990 I was invited to a friend's wedding in Wanaka, South Island,  New Zealand. Wanaka, no Wanaka... not WANKER, WANAKA!

Anyhoos, Wise Woman and I decided to make a real adventure out of the trip and booked a hire car for two weeks to explore both North and South islands. Now not many people in their late twenties would relish a trip trecking around with their mother, but for me it was a great opportunity to share the joy of travel with someone as warped in humour as myself. As it turned out it is lucky I was with her because anyone else would think I was completely crazy-nuts-lost-the-plot insane.

All was going well as we checked in for our first night in a Golden Chain motel in the outer suburbs of Auckland. Have I ever mentioned the poltergeist who follows my mother and I around playing rather impish but embarrassing tricks on us? No? Ah well, I will now.

Several incidents had preceded this trip: walking past a table of handbags, not within touching distance, we both looked askance as one by one each bag dropped off the edge of the table. Sorta like watching a big stack of plump dominoes fall if you get my drift. Or handbag suicide.

And then there was the time a glass cube covered shoe display (you know, one of those on those tree like things all fancy, schmantzy, looking artistic, balance beamish set-ups) decided to fall apart. Not the glass bit, but the shoes. Falling in a heap, looking decidedly unglamorous lying forlornly on the bottom of the stand. Neither of us touched the bloody thing either. Of course, as the shop assistants looked on scowling we pair dissolve into hysterical giggles. Making us look all the more guilty.

Oh, and the Christmas wrapping debacle. Standing in K-Mart, in the stationery section looking at wrapping paper. Unbenownst to us we are under a whole large group of kamikaze rolls. We look up as dozens of tubes flow like a bunch of logs in the rapids off the shelf and onto our heads, and then the floor. Damn those nasty sprites. Some mischievous spirit took great pleasure in that one.

But back to our travel tale. So, there we are, relaxing after our flight and drive, short as it was, when Wise Woman needs to use the amenities. No issue, we are in our room, shouldn't be a problem. Then, as I sit watching TV, she flushes the toilet.

Ever heard the noise an old truck makes as you stuff up the double clutch changing gears? Sorta like a grinding, groaning, put your teeth on edge moan? Well, increase the volume tenfold and then draw it out for about ten minutes, add in a sound similar to a waterfall in the wet season and you have the cacophony which enveloped our room. We didn't know whether to run for our lives, ring the desk for help, or dissolve into slightly hysterical laughter. Of course we chose the latter, and by the time we had ourselves back under control the noise had ceased. After much deliberation and mirth, we came to the conclusion that this was how New Zealand toilets sounded.

Our next incident was in Christchurch. Same sorta scenario. We settle in to a quiet night, deciding to have some toast for a late night nibble. Put bread in toaster, push down lever... Pow - room descends into darkness! Cue giggles as we fumble around in the dark, stumbling over each other in our attempts to find the door. Open door, to more darkness, whole motel is blacked out. Oh crap, only us.

Then we realise that as far as we can see is in pitch black... Uh-oh. At this point the manager comes out to chat, and tells us that a transformer has blown and blacked out the whole area. Whew, didn't think a little toaster could blow the whole street, even with the help of the WW/MM poltergeist.

I could mention far more, but then this post would go on forever. But you get the idea. Most of our trip was spent in laughter, and it passed all too quickly.But now you see why I prefer to travel with the WW. After all, only those close to you really get it when you are a slightly twisted person with your own family spirit...

Challenge 4 Muse Wars: The Things We Do For Love

Muse Wars

Challenge 4: Random Ramblings of SAHM

48 hours 500ish words - Let The Challenge Begin...

The loud blast of an angry car horn made Jenny leap, only the strong biting grab of her seat belt saving her from slamming her forehead on the steering wheel. With a muttered curse she continued her kerb crawl ignoring the louder and louder beeps behind her. They could all go to blazes, this mission was too important to rush. Struggling to peer into the garish glare of the seedy shopfronts, Jenny scanned each hooded teenager throroughly, slowly, intensely. Where the hell was Immie, and what on earth was her seventeen year old daughter doing sneaking out of their hotel in the dead of night? She could not believe that her normally sensible child had changed almost overnight under the influence of an on-line acquaintance. This new Immogen was an absolute stranger to her own Mother. The once sweet dark-haired beauty had been transformed into an angry, sweatshirt-clad, sullen punk. She had even tinted her glossy brown hair with some sort of murky purple dye, though Jenny supposed she should be grateful that there were no body piercings or tattoos to worry about. None that she could see anyway.

The kerbside crawl continued. Cars now weaved around her snail-pace vehicle, drivers screaming abuse as they flew past. She had no idea what she would do if she could not find Immie. She was in a strange land, with no friends or contacts to call on... well none she wanted to renew connection with if she had a choice.

A glimpse of a plum haired beauty under a darkened hood quickened her pulse. Is it? Craning forward, Jenny rolled down the window for a clearer look. Only then did she notice the grey-haired man holding her child in his suit-clad embrace. Dear God, he was so much older, even in her wildest imagining she had not expected this.

"Immogen!" Anxiety raised the pitch of her voice, shrilly splitting the underlying night murmers. The couple turned, dismay warring with relief as Immie recognised her mother. The companion merely sheepishly shrugged, appearing resigned and prepared for this confrontation. Her anger overrode concern, and Jenny thought she could easily kill right then. How could he act as if this was not a big deal, what sort of a person was she dealing with?

"Hi Mum." Her daughter's defiance resurfaced, shock receeding quickly. She pulled her reluctant companion over to the now stationery car. "Aren't you going to say hello to Dad?"

Shocked brown eyes met the bemused brown gaze of her former youthful indiscretion, thought long left behind in her agonised dash back to Australia.

Damn internet, once Immie knew her birth father's name she would not be deterred from this destructive path. The web made the world so bloody small sometimes.

"Hello Ari. Long time no see."

Do You Vote For Yourself?

Yes. it's that time again. Blog This Challenge 32: Comfort Food voting has opened and I have a question for you.

Come on, be honest! Do YOU vote for your own entry in challenges? I know it is not the done thing, certainly not considered politically correct and most people would deny it until blue in the face, but I do. Not all the time, but when one of my entries captures my heart (and we all have those favourites) like my Literary Whore, or, yes I will admit it, my Midnight Oil Eat It Out entry for this challenge,  I vote for ME!

I also am a competitive git, and as I said in one of my earlier posts, have this immense fear that when I go look at the poll a big fat zero will be there staring right back at me. We all crave acknowledgement or recognition, it is the nature of the beast. Once we have a taste of it, we want more.

The two challenges I have won, the first one I entered: Challenge 26 Quick Fix Meal and the most recent Challenge 31 My New Super Power, have given me an incredible emotional high and confidence boost. And once you have experienced this, well it is addictive.

You see I do not, like a lot of people who write or blog, truely believe in myself. I still find it incomprehensible that I have 58 followers! 58 people who want to see what I write, who find me entertaining enough to want to come back, who like my blog. I think it stems back (at least in my case) to the life change which comes with being a Mum. It is the most rewarding job on the planet BUT you also lose a piece of yourself, of your individuality. A lot of my self-worth was tied into my former working life. It is a situation where if you do a good job, you receive a pat on the back in the form of personal praise, a bonus system, or review. Motherhood rewards are not that clear cut, and usually come from sources who you know have strong personal ties to yourself. And so you lose that little bit of confidence in your ability. Winning these challenges gives you back a piece of that. Others who do not have a strong personal involvement have chosen to honour you and your entry by voting for you.



Get free graphics at blixy.com!

Anyway, enough of my self-analysis, what about you? Do YOU vote for yourself? Just sometimes, maybe? Come on, 'fess up... a bit of self-belief is nothing to be ashamed of.

Oh, and go read all the entires in Challenge 32, and vote for the one you like best. Every one of us who enter would appreciate it more than you could ever realise.

No undue pressure or emotionally charged persuasion from this end this time, but...

December 16: Tea of the year #best09 NOT!

I can taste my favorite tea right now. What's yours?

Gwen Bell 2009 Challenge

BLURGH... Hate tea. Tastes like dishwater. Never touch the stuff. So I will blog other things.

“There is in every true woman's heart, a spark of heavenly fire, which lies dormant in the broad daylight of prosperity, but which kindles up and beams and blazes in the dark hour of adversity.”

~Washington Irving~

Need I say more? No? Then I'll just let the pictures speak for themselves.