Voices of Autism: ‘Please Understand’

Every day throughout April–Autism Awareness Month–we will be featuring a different reader-submitted story about living with autism. Today’s story was written by Josie Texidor, mother of Collin, 10, and Drew, 3, and author of the blog Lucyshouse Blog.

texidorI am a mother.  I have three kids, two on the autism spectrum who also struggle with sensory processing.  This fact permeates pretty much all factors of our lives.  It determines which events we choose to go to, when and where we vacation, and which foods we eat.

It has created constant stress around school.  The phone ringing during school hours brings a jump to my stomach and an automatic, “uh oh” from my lips.  What happened now?

Instead of sports or music activities, we’re more concerned with getting speech, occupational, or social therapy set up–and making sure insurance will cover it.  Birthday parties, while exciting, are also scary.  How will my child react to all the change and noise?

Autism brings us shaking heads and wagging fingers from elderly people in stores.  It brings looks of disapproval from mothers with pretty little girls looking quietly at their dolls.  Autism brings uninformed teachers labeling your child with a scarlet “D” for delinquent before they even get out of kindergarten.

Every parent has this to a certain degree. I know that. But what people without autism in their lives don’t understand is that the judgment is so constant. You know that every-once-in-a-while interaction you have because of a bad day? It is a common occurrence in our house.   And not because our kids are bad kids–in fact, they’re amazing, thoughtful, creative and loveable. Just like your kids. They just have autism.

The issues autistic kids struggle with shows itself behaviorally. Some parents may think the way they parent would create a different outcome. But trust those of us in this growing autism community when we say that it would never happen.  You can’t parent autism away.  We’re all trying hard, day and night.  We love our kids fiercely and fight for them daily. The very fact that we work so hard makes those “lazy parenting” looks sting even more.

My natural inclination is to feel every one of those judgmental moments to the core. But somewhere along the way I learned I have to be thick-skinned to parent a child with autism.  I try to do the best I can and ignore the ignorant judgers around me, but being human, it still gets to me at times.

So do you want to know what you can do?  Being an ear to your friend is good. Talking about autism awareness is even better. But do you know what will change their world? 

If you understand.

It is almost painfully simple.

Understand that our kids try so, so hard.  Much of the time the world feels like a bombardment of the senses.  Restaurants have noises that cling and clang, which feels like nails down a chalkboard to my child.

Understand that if my child covers his ears when your baby cries, he’s not being overdramatic or rude.  It truly is hurting him.

Understand that if my child is playing with his iPad at the table while we eat, we’re enjoying the fact that we’re able to be there and the distraction makes it possible to be out as a family. It’s not because we don’t enjoy each other’s company.

Understand that my child is whining because, although he is 3 1/2 years old, he is still learning to speak.  In fact, he just started using three-word sentences!  The whining is a work in progress.  And, just trust me, we’re working on it.

Understand that I have researched, I have prayed, and I have cried over my children.  I have also cherished every moment I’ve had with them and celebrated their amazing accomplishments.  They are treasures that I feel blessed to have given the chance to walk this life with. 

Remember when you see someone having a hard time and you think you understand why, you’re only seeing 30 seconds of that persons life.  Look past the 30 seconds.

Understand.

Please understand, because before being a special needs mother, I was simply human, simply a person, simply a friend.  Just like you.

To read previous stories in this series, click here. For instructions on how to submit your story, click here.

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  1. by Floortime Lite Mama

    On April 26, 2011 at 8:03 am

    Very true
    Sending you a big hug
    thank goodness for Autism Awareness – I think many more people understand today than they did ten years ago – but we have such a ways to go still

  2. by Alysia

    On April 26, 2011 at 8:42 am

    This was so powerful. “You can’t parent autism away”. I feel that so strongly.
    Thank you for sharing this. My son has SPD and autism, and it’s the sensory part that is so hard to explain and so hard for others to really get. This explained it perfectly. Thank you.

  3. by Niksmom

    On April 26, 2011 at 9:04 am

    Beautifully said! I may have to forward this particular post to several people I know…including teachers.

  4. by Lynn

    On April 26, 2011 at 9:29 am

    “You can’t parent autism away”…so true. And the irony being that we work soooo hard and fight so hard for our kids. It’s certainly not for lack of effort.

  5. by Spectrummy Mummy

    On April 26, 2011 at 1:01 pm

    You’re absolutely right, it is painfully simple, understanding. Great post.

  6. by TonyaV

    On April 26, 2011 at 1:59 pm

    From the heart straight to the soul. <3, Blue's Mom

  7. by Mike Olbinski

    On April 26, 2011 at 5:44 pm

    Beautiful words and article Josie…proud of you for sharing this and writing it. Well done.

  8. by Josie

    On April 26, 2011 at 6:57 pm

    Thank you so much for your comments everyone. I’m honored that parents.com chose it!

  9. by Barbara Manatee

    On April 26, 2011 at 10:11 pm

    Great post. I work with kids with Autism and sometimes I feel like its So “out there” today compared to 12 years ago when I started teaching…yet so many people still don’t understand. Honestly, some of my students’ parents still don’t fully understand. We work together to help them as their lives change with each new ‘stage’

    I hope that your children’s teacher take some time once in a while for a “good” phone call or note – to celebrate some positives instead of always calling about the tough moments!

    ******
    April is Autism Awareness Month. I’m dedicating my blog all month to Autism.

  10. by Josie

    On April 27, 2011 at 1:32 pm

    I’ve found that too… people seem so much more aware (myself included) from years ago. I also have a 12 year old nephew with Asperger’s and I just had no clue back when he was first diagnosed.

    Part of me thinks people seem so aware because I’ve surrounded myself with people who understand – or at least people who empathize. Every once in awhile, I’m a bit shocked at how harsh and downright mean people can be. Then I realize how fortunate I am to have the people I have in my family’s life. I hope at some point EVERYONE will have at least a good basic understanding.

    As far as teacher’s go – we’ve had some who truly “get it” and enjoy him and where my child thrives and some who just want to go by the book so much that he has no chance for a successful year. I never knew school could be so stressful for the parents! ;)

    The biggest thing I think teachers should understand is that kids on the spectrum need “structure with appropriate understanding.” And the child should be placed in a classroom where the teacher’s personality is able to handle that. Just my two cents on that topic. ;)

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