Autism Awareness

Just jumping in quickly to link and post some stuff. My dear friend Jen, over at Jemikaan, is living in the throws of battle on the fields of Asperger Syndrome. It is bloody tough, and I must admit, easy to forget just how bad, until someone pulls the scab off to remind you of the festering wound below.

Recent posts of mine sing my oldest boy's praises. He is thirteen, he is in the throes of puberty, he has Asperger Syndrome, he is incredible. A couple of examples are in my Dragonfly post, or the Hum in my life one. There are many more, but I won't bore you with them all.

For before the good came the hard. The days of working, pushing, fighting, intervening. The nights of sleepless worry, second guessing constantly. The days in which I wrote this:

"What can I say to people to let it out? They say how average, normal he seems but they don’t live it. The fights, struggles, mood swings – his and mine. And the questioning of how much damage I am doing to his brother. How wrong am I getting it? The doubts, anger and frustration of living day to day. The struggle to do normal things like taking a family break. He told me today “I will kill you” and he probably will, somehow, sometime; the heart attack or stroke from the stress, the gun when he is older and angrier… the alcohol I use to feel better... or not to feel at all. So now I sit, unable to sleep; and type and cry.”


Many, many years ago now, so far back in the dim dark past that I need to track down the original to see when it was written (2005). In 2007, I wrote this piece for my first foray into creative writing. Life With Autism. Raw, painful truth. Go, read it. It is good to remember how damn hard it was then. It makes the wonderful young man he is now so much sweeter to savour.

Why this post? Because I want friends like Jen and others who are still caught in the throes of the battle to know it is possible for it to work out as you dream it will. It is conceivable that a light will appear at the end of that dark, difficult tunnel. And those hopes and dreams you have for your child? I am here to tell you they can come true. Ours have. Take heart, stay strong for the possibilities are endless.

 

FYBF - Tales of A Dragonfly Future.

In Japanese culture, it is believed the dragonfly is symbolic of success, victory, happiness, strength and courage, and represent light and joy. It is a reminder that we are of the light and can reflect it in powerful ways if we choose. Seeing through illusions and allowing you to shine with new vision. A symbol of transition, change. From murky depths to shining light.

He is the dragonfly. Transitioning from murky hidden dark childhood into brilliant bright irridescent youth. I watch as he soars to new heights, waiting for the pause, the hesitation of new wings, prepared to provide a safe landing if he falters and falls. It is not necessary. He flits past my line of vision, pausing to hover close, brushing my fears away before flying off to new worlds. Returning, always returning home safe from his latest adventure. Ready to fly once more in the brand new day, pushing past old boundaries and anxieties, revealing unforeseen strength. He radiates happiness from his very soul, deep contentment down to the core of himself. He is the dragonfly. He is MY dragonfly. As he soars my heart soars with him.

 

 

Nowadays I feel more and more distant from others on this ASD journey, saddened to see their struggles,no longer able to relate to the despair. For all that fills my eyes is the blinding brilliance from a myriad of reflections of his rainbow wings as he flies higher and higher bathed in happiness and hope.

Dragonflies have always been his thing. Since a very young age Boy 1 has been enthralled by these magical creatures of the wing, and it is what we have given to those who help him as gifts of thanks to remember him by. Who ever knew how prophetic such a symbol would turn out to be. Always dragonflies, everything dragonflies...

 





 

I Am Here, Sort Of.

The past fortnight has taken a huge toll. There are parts of myself I worry I have lost forever. Some days I am angry, others I am, well, forlorn. I have taken some steps forward, I finally signed on for derby last night and oh, it was a joy to be far from here, away from the insidious whispers, feeling free. The skating flowed, the derby skills were rusty, but surpringly still there from eons ago. WHEN I am better I will blog and post photos in my Hellion blog, I promise.

I am dealing with the loss of my uncle, and am going home. I am so sad it is to say goodbye to someone who played a major role in shaping me, but also glad to be seeing family, some of whom I have not seen for so very long. Too long. I think the death and grief have pulled the rug out a little more, and halted the shaky steps forward I was making. I still cannot bear to be at the school. On the days I must pickup the boys, I shake, sweat and feel ill. I sit in the car, sunglasses cover my puffy eyes, visor pulled down, pretending to be engrossed in a novel or faking phone conversation on the hands free if someone approaches.

I wish it would stop. Sometimes I feel so normal I think: "Okay, now I'll jump back in, go see how the boys are doing, talk to the teachers." BUT every time I drive past or near the school the tremors resurface, and those feelings of being out of control, out of my depth leap to the forefront. Maybe I'll be better when I come back, maybe going home will give me back my emotional solidity, stop the emotional quicksand from sucking me down.

I hope so. This is quickly degenerating into one of those whiny, poor me blogs. And that has never been my style... until now.

National Carers Week 18- 24 Oct, 2009

I am a carer. Actually, I am a mother and a carer. My oldest child was diagnosed with a form of autism spectrum disorder: PDD-NOS; at 4 years of age. Diagnosis was changed to Asperger Syndrome at age 7. He will be 12 in January. Over the years we have intensely accessed speech therapy, occupational therapy, physio therapy, psychologists, paediatricians, osteopaths, homeopaths, and many other groups and therapies. We have employed teacher aides and social skills teachers. Our lives have been moulded around him, and his needs.



Someone commented to me yesterday, a diagnosis or illness or disability not only affects the patient or person, it is of a huge consequence to the whole family. Such truer words have never been spoken. Next week I am off to school camp with him. No other parents are going as their child's carer, only me. Luckily it is a joint grade camp and Boy 2 is also attending. Happily, he is as excited as his brother to have mum on school camp, to him it is a bonus not a detriment.

I do not know what I am aiming for with this post. National Carer Week is over, life goes on, no-one in our lives even acknowledged it.

But to all out their who do care for family members, or friends, or partners: you are wonderful, loving, very special unique people, and from one carer to any other, I applaud you!

Autism Inspiration

I have found a wonderfully positive blog by a writer/mother. I have become a follower, but wished to post the link for those of us on the ASD journey. It is well worth your time having a look.
http://www.esteeklar.com/

I know I should be sleeping, but reading this blog has started my mind ticking over not slowing down. I was only thinking yesterday, on my drive home from work, about what messages I want my choices to give my sons. Yes, I am jumping back a couple of posts to the roller derby stuff. I guess part of the reason I am seriously pondering the offer is to send my kids a strong message: You can achieve anything if you set your mind to it. Let's face it, here I am around 30 kilos overweight, nearly 46 years of age, two young kids, one of whom has Asperger Syndrome, and I think I may well become a roller derby girl! Come on - who could have thought that was a possibility or even within the realms of the possible? I certainly didn't, even the 16 year old who still lives on deep inside me did not consider it. It is all about looking at the positives, not the negatives, and hope. Dare to dream, dare to believe in the good not the bad, dare to see the miracles not just the disasters.

Dare to soar.

And watch out for me and my wheels as I zoom past! See boys, if Mumma can skate, you two can move mountains!

Bringing back the sun.

Glitter and be gay

That's the part I play.

Here I am, unhappy chance.

Forced to bend my soul

To a sordid role,

Victimized by bitter, bitter circumstance.

Richard Wilbur

I do not remember the day fun left. I certainly cannot recall at what time laughter ceased resonating through this house. When did we stop laughing at life, choosing instead to entangle ourselves in the politics and drama of other peoples' trivia? There are so many suffering real hardship, it is quite embarrassing to admit to being caught up in what amounts to a high school popularity contest. And grounding when you look around at those friends struggling yet still managing to retain wit and whimsy. For all my flaws, a lack of humour was never before one of them.

It was not so very long ago I was running around after my little boys, giggling hysterically being the Mummy Monster holding the secret smelly sock weapon. Now all I seem to do is nag, lecture and worry what actions others are plotting. But I made a decision today: I am going to take back control and relaunch our life of laughter. I am walking away from the small town trash and embracing all that is good in my life. My children, my husband, my mother and my wonderful friends. Be they old or new or, as someone I adore said, imaginary internet friends, I am very grateful to have them in my life. So, to all of you out there in interweb land, I send you wishes of joy.

Oh, and bring back the smiles, I sure as hell intend to. Or at least die trying.