Hocus Pocus

  

You know, I don’t have time to listen to people’s emotional white noise. Ever.  Drama?  Forget it.  Don’t clog my day with that crap and for the heavenly sake of that guy named Pete – do yourself an even bigger favor and focus on what truly matters.  I’m so sorry your suit didn’t come back from the cleaners and there were locusts.  That really sucks for you.  Hold your breath while you wait for my Hallmark card in the mail – that will put an end to your misery.

We are at the end of Autism Awareness Month and I am exhausted by the needling, infighting and general lack of cohesion when it comes to autism and the Who, What, Where, When and How it all should be addressed.  Quite frankly, since it all sounds like a Hatfield and McCoy episode of Scooby Doo, I never bothered meddling into what the actual arguments are.  I just know some folks dislike Autism Speaks and I know there are celebrity autism experts that spend all of their energy nay-saying any treatments they don’t agree with whether or not they work for any of our kids.

There are those that consider it wrong to want to ‘fix it’ if God forbid you want to fix autism itself – or find a ‘cure’.  In a life that leaves little room for strategic war-gaming of such things as my choice of idioms, pronouns and prefixes in everyday conversation – it seems the emphasis is better placed on actual solutions rather than semantics.  But that’s just my lowly, humble opinion.

My daughter is a Rock Star.  BOTH of my children are Rock Stars.  They are each unique, loving and amazing rugrats.  Each has challenges, though vastly different from one another.  My 7-year-old son is brilliant and handsome and has the biggest heart.  He also is an elderly man in disguise and still hasn’t caught on to the hype of riding a bicycle.  The Boy needs the tags cut out of all of his clothing, the shower is too loud for his ears and he cries – A LOT.  He very well may need to start counseling soon as his emotions are truly overwhelming at times.

Having 4q Deletion and autism as her own challenges, RM struggles with verbal communication, transitions from one activity to another, rather dislikes the word “No” (unless she is using it) and carefully doles out her affection and emotions in strong, short bursts – occasionally with her hands.

But is it wrong to want so desperately to wave a Magic Wand and make my children’s challenges disappear?

It’s not your job to answer that for me.

Is it wrong to want to ‘fix’ autism?

It’s not your place to decide that for my child.

In this sometimes convoluted country of ours, parents are put on trial for neglecting to seek appropriate medical care for their ill children because their spiritual beliefs forbid scientific intervention.  Yet millions of parents fighting tooth and nail to get help for their children with developmental disorders are being judged by a different jury for wanting to ‘fix’ their child.

Give me that Magic Wand and I’ll tell you what I would do with it.

With one grand, sweeping stroke I would whisk away my children’s pain in an instant – leaving nothing behind but a wispy trail of sparkled fairy dust.  I would not wish the 4q deletion and autism away, or change the path of the journey itself.  I know that challenges are inherent to learning and growing, and are therefore irreplaceable life experiences.  Our struggles shape who we are and make us unique and instantly recognizable by our Maker.  Physical and emotional pain are a natural part of life as well.  But can anyone honestly say they would not take away their child’s stifling pain if that Magic Wand existed?  You bet I would.  And while I was at it, I’d make all the clothing in this world tagless and soft as a baby’s butt.

Listen.  It’s not about the language we use to describe our struggles, or the differences between what works for you or me.  It’s not about whether I say ‘lives with autism’ or ‘is autistic’ because I forgot for one moment to carefully craft my words into politically correct jargon.  Instead, it’s about the commonality of wanting the best for our kids and adults living with special needs as defined by simple sensibility.

Rather than nitpicking sound bites or the actual effectiveness of blue porch lights, let’s get off our asses and change the world.

We can start by providing the very best opportunity for people with developmental disorders to achieve meaningful communication whether by voice, sign or machine. We can teach others what autism is from our own experiences without prejudice or judgment as to which end of the pool your autism treads water.  We can offer that Warrior Mama on the ledge a bit of help rather than staring at the train wreck of her teenager melting down in the grocery store.  We can offer her a night out and a few drinks without autism around – a personal favorite.

We can hold our government and legislators accountable literally and monetarily to protect and provide the right to an appropriate and productive education as children and young adults.  THEN we can continue that support for our adults with autism by accepting nothing less than the absolute right to live in a safe and comforting home whether an individual lives independently, with family or with compassionate professionals.  We can go one step beyond that and further support these individuals by helping them create a dignified, spirited sense of self by providing meaningful employment whenever possible.

Lastly, it’s not about the organization you work with or the title after your name.  You are either invested in making the world a better place for people living with autism or you are not.  This includes those of you not personally affected by autism – wait a minute – no such person exists.  So invest yourself.  Now.

We all have a list of things that we would and would not change if given that Magic Wand.  But my cape never came back from the cleaners and the tsunami of autism is coming whether I want it to or not.

So how about we step out of Fantasy Land and instead of waving bogus wands around we just ‘FIX IT’?

[Editor’s note: Jess over at Diary of a Mom wrote a post that further discusses why different points of view are important, and I encourage you to read her fabulous account of her visit to The White House on behalf of all of us living with autism in our lives – which really means ALL OF US.]

About Rachel Kenyon

Rachel Kenyon is an Aspie, Advocate and single mom of two beautiful babes - The Boy (11) and RM (8). The Boy is a Legomaniac and RM is a kick-ass diva with Autism and 4q Deletion Syndrome. View all posts by Rachel Kenyon

12 responses to “Hocus Pocus

  • Shanon

    This is perfect, Rachel. Let’s please just all get off our asses and fix it. Perfect. xo

  • therocchronicles

    Love this. xoxo

  • Molly

    Well said, ma’am.

  • rhemashope

    say it, sister. you’ve always been an amazing mother and advocate for your children, now you are becoming an encouraging, powerful voice for all of us.

  • PJ Ruddy

    I have to say one of the best written articles from a parent who just happens to have a child with that Autism label. I personally have never understood what “fixing it” means. I never wanted to fix my son, I just want to maximize his potential because some of life’s most important lessons he has taught me and I am blessed to have him in my life. Your article has brought some light upon what “fixing it” may mean to families and I thank you. It takes enormous bravery to put your emotions out for the world to see. Thank You.

  • Patty

    I found your blog through Try Defying Gravity, and wow, you have blown me out of the water. I agree wholeheartedly with everything you say! This is such a complicated issue and it bugs me when people take one position and refuse to admit that they don’t have all the answers for everyone. Where do I stand on the issue of wanting to fix autism? It changes every single day. This is about our kids, for Pete’s sake. Of COURSE it’s going to be emotional and messy and complicated. The last thing any of us needs is someone cramming their beliefs down our throats or judging. The night out, on the other hand, sounds perfect! Great post!

  • Rachel

    I am very grateful for all of you and your supportive encouragement!

    PJ – That is MY personal and most hearty belief – that autism may overwhelmingly suck much of the time, but my daughter and her challenges and successes have made my life amazingly rich and blessed with the people and lessons supplied along the way.

  • Kate

    “This includes those of you not personally affected by autism – wait a minute – no such person exists. So invest yourself. Now.”

    YES!!! You are amazing:)

  • Robyn

    I just stumbled onto your site. It’s so beautiful. Love the photography. My son is 6 and gorgeous and autistic. So glad that you and “A Diary Of A Mom” are here for us! Thanks for all that you do.

  • jess

    aw, schucks. thx, guys. i love you too :) ..

    rachel,

    i’ve been chewing on this topic all week. i wrote today about why i think the word we use do matter ,,

    http://adiaryofamom.wordpress.com/2011/05/04/a-spectrum-of-words/

    xoxo

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