Breaking Out From The Prison Of Autism

Driving down the highway en route to Harry’s doctor appointment this week we passed a prison bus full of inmates.  It was an old school bus repainted white, with chains and padlocks visible on both its front and rear doors.  The windows were covered with thick white metal plates that had horizontal slits in them to let light through, with the exception of a sole window with no bars in the very front of the bus.

There was an inmate seated towards the middle of the bus looking out through the slits.  He stared hard, looking directly at me for as long as I could bear to look, holding his gaze.  All I could see through the slits were his eyes which were hazel, and a bit of an aquiline nose.  I found it disturbing, to be honest; It made me uneasy.  It started me thinking…he conveyed so much with his eyes.  His penetrating stare.  He hated being locked up on that bus and was probably tired of people staring at him like some kind of circus side-show act.  I’ve seen enough movies to know he was chained to his seat as well.  Basic human freedoms, denied.  And maybe rightly so.  I am not sure what he did to earn a ride on that particular bus but am guessing it wasn’t tax evasion.


It made me think about Harry, and the prison bus he’s been locked in for the past few years.  It’s really not much different except that he doesn’t deserve to be on it.  I know he wants so badly to get off that bus, to join us as we enjoy our freedoms.  He uses his eyes to convey so much to me now.  At just four he is still pre-verbal, but after 2 ½ years of intense biomed, homeopathy, CEASE and every therapy we deem promising he’s got great eye contact and he stares at me now sometimes, willing the words that form in his brain to come to his lips on demand. More often than not, they don’t.  I know he has the ability.  Those words are still chained up somewhere in there because sometimes they break through.  We got a two word sentence (owww mama) last Saturday.  And in December 2010 we had a four word sentence after a round of zithro that I can still hear clearly in my head…“Mama I want baba”.  But mostly he looks at me to convey the thoughts that are padlocked inside…the ones he can’t use a sign for.  And usually, I get what he wants to say.

Don’t get me wrong…this child has made progress.  He went from constant reflux and projectile vomiting every ounce he ate or drank at every meal to being a happy, healthy-looking sweetheart of a child.  He plays with his toys.  He loves Lightning McQueen and Mater.  He can spell his name and spells three letter words on the iPad.  He knows sight words—something we’ve recently discovered.  He follows directions and is learning to swim.  He knows all his colors, letters and numbers, as well as animal sounds.  He can do hand movements to every children’s song.  He gives kisses and hugs spontaneously and on demand.  He cuddles, and is the most compliant, eager-to-please child on Earth.  We’re getting close to pedaling his bike.  We go to stores, restaurants and theme parks with no problems.  He imitates.  We have made huge progress and I am thankful for it.  But I still want him to tell me how his day was, in words.

I want consistency.

If I had to say where we were in the recovery process, I’d say he’s in the front seat of the prison bus.  He’s not chained to the seat, but I’m not sure he realizes it.  There are no metal bars on his window and in fact, it’s open.  All we have to do now is get him to jump through it, or better yet, kick the whole frame in and leap onto the Recovery Bus my husband and I drive right alongside him.  I often wonder just when that will happen…but I know it WILL happen.  I can’t explain exactly how I know, but I do know it is certain.



My nickname is Goddess.  We’ll get into how I got that nickname another time.  I chose Demeter, the Goddess of the Harvest, as my avatar.  She was the only one of the Greek goddesses who could really understand the human experience of grief and pain, as she experienced it herself.  The goddess Demeter is best known for her fierce defense of her daughter, Persephone.  In another life, I was best known for perfect accessories from Bergdorf’s and Bendel’s.  Things that seem so far away and insignificant now, although I admit I still have a weakness…one that I can no longer indulge at whim.    A long, long time from now when I die, I will be best known for my fierce fight for, and protection of, my Harrison.  My sweet angel of a boy who by that time will need no protection and will have taken up the fight on his own for his children and his children’s children.  Until then we will throw him every rope, bungee and ladder we can find, and bake him metaphorical gluten-free-casein-free-soy-free-egg-free cakes with heavy-metal-free files inside to get him out of his prison, and into the freedom of our world.

~ Goddess

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15 Responses to Breaking Out From The Prison Of Autism

  1. Yankeegirl says:

    I feel this Harry Nilsson song also fits our kids….

    Everybody’s Talkin’

  2. Donna Powers says:

    Count me as a passenger on the support bus. You women are amazing! With you all the way.

  3. Rebecca Magliozzi says:
  4. Rebecca Magliozzi says:

    You said your son had a breakthrough after a four day round of Zithro.This is a huge indicator he could be sick with an underlying illness or autoimmune disease. Have you run bacterial or viral panels to see if there is an underlying illness? In my son’s case, he had Epstein Barr virus and Strep. Once we got the EBV under control he started being more social and could interact with children. The strep has caused an autoimmune reaction that flares up quite regularly, and we give him antibiotics for it. (cephalexin right now) He acts almost neurotypical on antibiotics. He has PANDAS.
    Some Docs out there have used minocycline for autoimmune disease, and I think also for autism. It reduces inflammation. Augmentin also does and has some immune modulating effects.
    Some things you can test for are:
    EBV and all 10 herpes viruses
    Lyme Disease
    Hashimotos Disease (autoimmune thyroid) or Graves disease (other autoimmune thyroid)
    Addison’s disease or adrenal gland issues
    Mycoplasma (causes pneumonia and other illnesses)- my son’s doc mentioned this recently
    MMR (measles, mumps, rubella)
    high titers to things he’s been vaccinated for

    Test immunoglobulin levels as well.

  5. Pingback: March 3, 2012: Where In The Recovery Process Are You? | The Thinking Moms' Revolution Starts Here

  6. goddess says:

    Lucky for you, our bus has wings. We’ll swing on by to pick you up as well. Always wanted to see Iceland.

  7. Harpa says:

    I love this post – your son sounds so much like my boy …. has the words but just can´t break them out …. I am HOPING for a seat on the recovery bus 🙂 Greetings from Iceland

  8. LuvBug says:

    He’s a-getting ready to leap, Momma!!!!!!

  9. Saint says:

    Beautiful!!!!! I am glad to be riding this bus with you.

  10. Sunshine says:

    I just love this. Save a seat on that recovery bus for us!

  11. Alison MacNeil says:

    Oleta Adams – Get Here this song represents for me the profound connection we parents feel with our autistic kids and the fact that we will never quit in our efforts to reach them and that our kids are trying so hard to help us navigate a way in. If you don’t know the Goddess I will tell you that she is optimism personified. She’s also really funny. And when she says she’s going to smuggle a nail file into that gfcf cake to help Harry saw through those chains, she’s not kidding. Nail file will probably be from the first floor of Saks too, left over from easier days.

    • Goddess says:

      You know, I got a gift card to Saks for Valentines Day and have been debating what to do with it since i am not buying jeans until i lose 10 pounds. OK, 15 pounds. Crap! Summer is coming. Diet starts Monday. For real. So….first stop, beaury counters, for a Recovery nail file it is! Um, I’d like one non-metal organic, bpa-pvc-sulfate-paraben-phalate free Recovery file in a green color please. I’m sure that’s not the oddest request they’ve ever gotten.

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