Autism Does Not Own Me

twonkSo the other day I’m sorting through the friend requests, adding people who don’t look too much like paid pharma trolls, when I come across a picture slogan.

Catchy!  I like it, of course. It screams to me over the rim of my venti sized coffee cup.  Strong!  Defiant!  Determined!  Too bloody right autism doesn’t own me.  I’m my own person.  I have my own interests and sense of identity.  Autism DOES NOT own me!…

I mull it over a little more as I glance through the morning edition of the Jellyfish Times, and by the time I’ve through the latest articles from Age of Autism and VaxTruth I have decided to adopt it as my new life motto.

“AUTISM DOES NOT OWN ME!”

YEAH!

I lay out the supplements in the seven day sorter and put together my youngest son’s GFCFSFEF lunch before going upstairs to run him a bath and scrub the excrement from his bedroom walls and floor.  Then I load up the six changes of clothes and underwear, the ‘just in case’ packet of pull ups, baby wipes, electronic communication device, and volumes of data sheets and set out for therapy.

(Worthless trivia… between home and the therapy clinic we can listen to Send Me On My Way by Rusted Root exactly nine and a half times).

“AUTISM DOES NOT OWN ME”,

….I chant under my breath as I smile sweetly at the girl who fed him PINK and PURPLE the week before in the form of jelly beans she had found abandoned in a drawer.  Don’t dwell.  Let it go.  What’s done is done, and besides…

“AUTISM DOES NOT OWN ME!”

does it.

After three hours of therapy it’s time to visit the dentist.  I use my iPhone to keep him calm and distracted as the nurse straps him to a body board and wraps him in velcro.

Things start out relatively well…

“No flouride. Yes I understand why you think it’s necessary. No I still don’t want you to use it on my child. I have read up on it, thank you”,

as always, but generally end the same…

“Yes, he is unnaturally strong.  I have no clue how he wriggles free.  Honestly, he’s usually very passive.  No, I don’t think you should get a tetanus shot….”

Then back home for ABA, featuring my favourite song…

The A says Ahhh                                                      

The A says Ahhh

Every letter makes a sound

The A says F**KING AAAHHHHHHGGGGG!!!!!!!

After three hours the therapist staggers to the convertible she purchased as a reward to herself for sticking with such a demanding job.  She’s 29 years old and has a bucket list and symptoms of a mid life crisis.  I’m 40 years old and have a F**K IT list and symptoms of early menopause, but it’s ok….

AUTISM DOES NOT OWN ME!.

Dinner is a marathon of sensory issues, food allergies and plain old don’t like it with two kids who will barely eat and one who would happily chew the legs off the table.  Conversation consists of King Julian impersonations interspersed with random inappropriate dance moves to I’m Sexy and I Know It.  It’s the same every day, but the two ‘older’ boys have mastered the art of loading the dishwasher.  Win!  In your face Autism!!!

And at last there’s just enough time to have another quick glance through my Facebook notifications before I open my laptop and as the screen comes to life I see the picture which started my day…

AUTISM DOES NOT OWN ME!

But now it’s way past midnight and the night is filled with shrill screeching as he stims alone in his room.  The other two boys are in my bed in the hope of stealing some sleep away from the disturbance.  As I navigate away from my new life motto I think to myself

Who am I kidding? I’m going to need a bigger coffee cup.

 ~ Twonk

* For more blogs by Twonk, please read Do You Remember?

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36 Responses to Autism Does Not Own Me

  1. Liora says:

    Oh you listen to Rusted Root??!! I loved them, I lived in Pittsburgh when they were first getting signed. best, Liora

  2. Killah says:

    Melissa Vega you can look me up under Jai Power and send a request 🙂

  3. Mary cotter says:

    It made me laugh and cry at the same time,the bitter sweet irony of that statement,I could relate to it so well

  4. Happy says:

    I think the cartoon you choose is very appropriate especially for that “A says” song.
    Aaaaaaaargh!!!!!

  5. Mamabear says:

    I adore you….and admire you tremendously. You are bloody awesome and I think you are entitled to an enormous coffee cup. I am on the hunt for one <3

  6. Melissa Vega says:

    Signed, sealed, delivered- I’m owned! LOVE this post! Can we be facebook friends?

  7. Sugah says:

    I so freaking love this. That is all. Peace out.

    MUAH!

  8. Shiri says:

    Excellent post! I’m proudly wearing my TMR shirt today, and reading this blog is the most anticipated moment of my day… and Autism doesn’t own me either 😉

  9. Buzz says:

    I hear that A says first in the alpabet song daily…..your are a rockstar…xoxo

  10. LJ Goes says:

    You knocked it out of the park my friend. Blew it out of the water! Told em how it is! This needs to be read, forwarded and shared with every breathing human. For such a little brit you have such a gigantic talent for ferreting out denial/BS. Love everything about you girl. XOXOXOXO lj

  11. Diana Gonzales says:

    All my life, I’ve been a bitch. A little mean bitch, a sexy bitch, one cool ass bitch, and now Autism’s bitch but Autism is starting to meet that determined bitch and I’m kicking its ass…out of my son’s life! Great post!

  12. BB says:

    Positively brilliant governor!

    I would like to add to your new motto, um your new kind of sort of motto on a good day maybe:
    “Autism? Autism? I don’t need no stinkin AUTISM!!!”

    Dear Autism,
    Get the F outta our house and lives, you ain’t welcome here!

    Peace out!
    Love to all!

    Barbara Biegaj in Chicago

    P.S. ( say this the way Milton would from Office Space, the movie):
    Though I may not look or feel it, damn it! :
    “I AM sexy and I know it, um I think so, maybe, um not really today though, I gotta headache and need to take a couple of aspirin and lay down.
    Does anyone know where my red stapler is?”

    http://en.wikiquote.org/wiki/Office_Space

  13. Moneytmr says:

    Killah knocks it out of the park!

  14. Jeanne says:

    Great piece! Love it! Love TMR!

    By the way, here’s a blog that’s been around for a while you might find interesting 😉 “Autism’s Bitch” (http://crystaldavidsonengler.blogspot.com/)

  15. Laurie Connell says:

    Killah, Absoultely brilliant, hilarious post. Autism does not own me. Love the gun, we will destroy it! Laughed out loud! If only some of our friends with typical children knew what we do on a daily basis, the sacrifices we’ve made. Puts multi-tasking in a whole new light when people complain about mundane things. Awesome, Wed. morning humor check.

  16. Laugh out loud hilarious!

    From one bitch to another.

  17. Lynn Mulder says:

    Love it! Made me laugh out loud! You are a wonderful writer and autism warrior mom, thanks for that, you are helping others even if you don’t think so!

  18. Jaci VW says:

    Ah, yes. I’d like to believe I am not Autism’s slave, but really, I am it’s b!tch too. Thanks for the great post!

  19. Goddess says:

    Love this…Sending you a great big PDA kiss…I know you love that. Great post.

  20. Maryann of Matthew's Puzzle says:

    I don’t know what you are complaining about, didn’t you know autism is a blessing. It is beautiful and you should be jumping for joy as you was the poop from the walls. I heard there are some high functioning autistic people that think you shouldn’t change anything.

  21. bethany says:

    This tells it like it is. Thanks.

  22. Melinda says:

    So been there … You will wake up one day and know that Autism no longer owns you … But the inbetween is truly biting.

  23. Guilded Thinker says:

    Love ya, Killah! Awesome post. You manage to describe life with autism so accurately but still through the lense of that wicked sharp sense of humor that is so very you. That paragraph about the therapist and her bucket list had me laughing out loud this morning, even before I’d had my necessary caffeine.

  24. T ammy Foster says:

    It would help if I actually provided the link wouldn’t it? http://www.oxfordhyperbaric.com/

  25. T ammy Foster says:

    You may have already heard about it but just in case, for anyone else who reads this as well, have you ever lookind into hyperbaric ogygen therapy? I don’t know where you are located but a place near me has been treating autism with hyperbaric therapy with astounding results. They even have children who can no longer be labeled as autistic by the school system. (And you must know how the school sysytem LOVES their labels and hates losing any). The therapy really hits to the root problems surrounding autism. It reduces inflamation throughout the whole body. Creates new blood vessels, especially in the brain, delivering more oygen. Detoxifies the body even of heavy metals. You do not have to let autism own you AND you do not have to let it win! Here is a link to the site of the place near me. They have an extremely informative website. At the very least it will help someone decide if it’s worth looking into further. Take a deep breath and love them, because that’ really what gets us through anything:)

  26. Sophie says:

    Haha! brilliant! made me laugh out loud!! especially the bit about the ABA therapist!! 🙂

  27. Marco says:

    LOL…unfortunately autism only owns you as much as you love your affected child. Plenty have a far easier day. And their kids have a far worse life.
    It is what it is…

  28. PoppyTMR says:

    You take it all in such stride., always with a laugh and a great sense of humor. I am in awe of you. Seriously, one of the toughest English birds I know 😉 Love you….now let’s turn the tide and make Autism OUR Bitch xo

  29. Karren says:

    Ha! Well said!

  30. Sylvia says:

    Killah, I’m with you. Autism consumes many, if not most, of my waking moments. Even when I’m away from my son. And really, how could it be otherwise. Thinking of you.

  31. Alison MacNeil says:

    Killah, you are the least complainingest person I have ever met. Yes I just invented a word. Because there isn’t a word to describe your ‘let’s get on with it, bad things have happened, but what choice do we have, we go forward’ attitude. I know mother’s who fall apart because their typical daughters won’t wear the belt that goes with the dress and makes the outfit. You are damn funny too. We choose what owns us. I would say you are owned by your spitfire attitude. In this country and in my book that is high praise.

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