Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

My Fight

with 15 comments

a shade of blue

Pudding hates DIY stores.  The ceilings are too high, the lights too bright, the smells too noxious, the noises too loud, the people too many.  We just can’t go there with her, it is unbearable.  Nothing makes it better.  So we just avoid them, easy as that.  Most often Spectrummy Daddy goes alone, but he was ill, and we really needed some stuff.  My Mondays are crammed anyway, but there was no putting it off.  Pudding was in school in the morning, so I took Cubby right after his music class.  He is more sensitive than she is, so I wasn’t sure how he’d do, but apart from a lot of questions about the various noises, he did okay.  Phew.

I only had a brief amount of time before I had to collect Pudding to take her to speech therapy, so I found an assistant to ask where I might find the first item on my list.  She helpfully pointed me in the right direction.  We admired the fork lift truck(!) for a while and then continued to source the rest of the items.

I’d almost finished, when I walked by the stand for the “Light It Up Blue” campaign for Autism Speaks.  I’d been intending to pick one up before April 1st, so walked purposefully over to the display.  Before I got there, I was intercepted by the assistant who had initially helped me.  She asked if I wanted to buy a blue light bulb to support Autism Speaks, and I said I did.  She placed one in my hands, then thanked me for “helping to fight autism.”

It stopped me in my tracks.  Fight.

We hear fight against cancer, and diabetes.  To her mind, autism is just another disease that needs to be eradicated.  Like cancer.  The autism epidemic.  Stealing away our children.  Only Pudding didn’t change.  She is the kind of kid that would have been missed in the past.  I believe there is an “epidemic” of kids who were previously undiagnosed.  Some of her symptoms became more noticeable, but she is the same person.  She isn’t stolen away, she is right before my eyes.  She is the freest spirit I know, who revels in the things that bring her pleasure, who really lives in her every moment.  She has no artifice, she is real.  I’m not sure she’d want to fight who she is.  I know I don’t.

Now I know adults with autism, and they are proud of who they are, and the unique contribution they bring to the world.  I wouldn’t dream of telling them they were diseased.

But then I have only experienced parenting a child who is verbal, who is considered to be “high-functioning.”  For all her differences and difficulties, she has less of a disability.  I know many parents are living a battle.  They have never heard their child speak, and witness only aggression and injurious behaviors.  That is their autism.  They would do anything to take away all the barriers to their child’s ability.  That is their fight, and they are right to fight it.

Don’t get me wrong, there are many things I would like to fight.  Her anxiety.  Her difficulty with language.  Her daily struggles with her senses.  But I find that when I get into a fighting stance against those things, it is Pudding who backs away.  She needs to be coaxed and comforted to move forward.

My fight is about accepting that I can’t do everything for her.  She will struggle, and I will have to witness it.

My fight is about getting her to the point where she could go to this very DIY store, or any other place that she struggles.  Or getting them to adapt for her.

My fight is about ensuring my girl is included, be that in school, the wider community, or in a magazine.  It is through advocacy where our punches seem to hit the hardest.

My fight is accepting that our lives are different from the way I thought they would be.  Acceptance, not an act of violence: submission that is gentle and tough at the same time.  The hardest fight of all.

My fight might not be the same as another mother’s, but we still fight together, and our fight will always begin with awareness.

I smiled at the assistant.

“I’m buying the light for awareness.  My fight is for understanding and acceptance.”

I hope we’ll be the winners.  Our loved ones are our champions.

*****

If you haven’t already, please read and comment on the letter from Jess (A Diary of a Mom) to President Obama, asking him to light up The White House on April 1st and 2nd.

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Written by Spectrummy Mummy

March 24, 2011 at 7:39 am

15 Responses

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  1. I feel the same way. Thanks for saying it so well. Think I’m going to stop what I’m doing and go buy my blue bulbs now.

    Diane

    March 24, 2011 at 9:55 am

  2. I have such mixed feelings about autism. I guess all parents of kids with autism do. Some days I wish I COULD fight it and rid the whole world of it. But, really, it’s just that I want to make life a little easier for my son. More than anything, though, I want people to give him the benefit of the doubt. I want more people to understand autism and how it affects people. I want others to not judge him by his quirks, but really get to know him for the amazing, wonderful boy he is. And for that to happen, awareness needs to be raised.

    Thanks for your post and for writing Parents magazine! I’m going to write something to contribute to them.

    Patty

    March 24, 2011 at 10:49 am

    • Awesome- I can’t wait to read what you have to say.

      I’m certain as parents we all have those days where we would wish away anything that makes life more difficult for our children. Some of us have more of those days than others. Some have far too many of those days. I can’t do anything about that, but I can let other parents know we are with them on every one of those days, both happy and crappy.

      Spectrummy Mummy

      March 24, 2011 at 1:53 pm

  3. You’ve been able to articulate and clarify this–thank you.

    Lizbeth

    March 24, 2011 at 11:37 am

  4. Thanks for this lovely post. As one whose child is more severely impacted by autism, yes, there are days I wish to fight it tooth and nail. But, I think, much like Patty wrote, I really want to fight FOR him and to fight to make the world a bit more understanding and accepting of him.

    Niksmom

    March 24, 2011 at 11:41 am

  5. Beautifully put. Thank you for YOUR understanding. Now, if you’ll excuse me, I have a bulb to buy. 🙂

    Laura

    March 24, 2011 at 2:11 pm

  6. You have to be an understanding and kind person to put these words and thoughts to paper and Pudding is lucky to have you. I cannot express how moving and beautifully written this post is that came from a very simple, unintended short exchange with a stranger. It is simply my favorite of yours. Thanks.

    solodialogue

    March 24, 2011 at 11:46 pm

    • I don’t know how this comment got lost, but thank you so very much, my friend. If I wasn’t so busy, I think I’d have bored the poor woman to death on the subject. Lucky for her I had somewhere to be!

      Spectrummy Mummy

      March 26, 2011 at 4:16 pm

  7. Keep fighting that fight, Mama!

    Rachel

    March 27, 2011 at 10:32 am

  8. My fight might not be the same as another mother’s, but we still fight together, and our fight will always begin with awareness.

    AMEN

    jess

    March 29, 2011 at 5:33 am

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  10. […] Clover No Guile Red Shoes, Autism Blues, and Pinks and Purples The Simile of Autism and Snowflakes Spectrummy Mummy’s Blog Stinker Babies Sunrise Learning Lab Try Defying Gravity Welcome to Stim […]

  11. Pudding is indeed lucky to have you and both of you are so lucky that in Pudding’s case autism was identified early so your whole family understands her. I hope the more the light shines on awareness the more other girls will be identified early. “High functioning” or not should not matter, what should matter is helping them to be the best they can be while accepting that their differences make them who they are which is not less than anyone else. Our lack of understanding contributed to our daughter being the victim of bullying, so yes awareness is crucial to the equation and “fighting” the very thing that makes our children so special is definitely not an option. God bless you for saying it so eloquently!

    Sue

    March 31, 2011 at 1:08 pm

  12. […] aware.  This month is about trying to reach those who aren’t aware.  It is about shining a blue light that gets people talking about autism.  It is about making sure the doctor who dismissed your […]


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