Autism: What Would You Change?

As a parent of a child with Autism, I can certainly think of some of my child’s struggles or issues that I would love to be resolved. But I never really stopped to think… is this what my child wants?

We had an exciting weekend of “firsts” that opened my eyes in more ways than one.

This past weekend brought an amazing opportunity to attend the Canine Companions for Independence graduation and puppy matriculation ceremony… at Sea World! It was our first time there, my son’s first ride on a “big boy” roller coaster (and boy what a scary first coaster – he rode Manta!), my daughter’s first experience with Dramamine and extreme car sickness (poor bubbelah!), the first long car trip with an old friend that’s never been in a car with children for that long, and the first time I asked my son directly how he felt about having Autism.

The conversation looked like this:

“Mom? When I get older will I still have Autism inside of me?” (it’s great how he knows he is not his diagnosis)

“I’m not really sure, sweetie – no one knows what the future holds. But I was wondering, what do you like about having Autism?”

“Everything!”

“That’s awesome! How about what you don’t like? What’s really hard for you?”

“Nothing!”

“Nothing at all? Not hearing loud noises or having your body hurt sometimes?”

“Nope!”

How could this be? What about all the times we’ve gotten kicked out of public places? What about all his sensory issues? What about the screaming and crashing and spinning? It made me think: this is his norm. He doesn’t know life any other way. Could I be the one that struggles and has issues with his Autism? I was certainly frustrated when we were face to face with a magnificent polar bear and all he could see and talk about was that the child next to him had the coveted 3DS!

Could my perception of his problems really be that his behavior is not fitting into a preconceived

My little Wednesday Addams

image I’m holding for him? Do I assume he needs help sometimes when he’s just fine?

I’m not saying he doesn’t need support or that this road is easy for any of us, don’t misunderstand. In fact, I’m quite certain Justin’s sister was secretly hoping the roller coaster would shake the Autism right out of him :) But I like to question my limiting beliefs and viewpoints from time to time to see if there are any that are no longer serving me. These questions certainly helped me take a closer look at acceptance.

As we were leaving the pool following our little chat, Justin looked up and exclaimed, “Mom! It’s a beautiful nine-tenths moon out tonight!”

And I realized then that maybe he was right. I would not change a thing about him either, Autism or not.

7 thoughts on “Autism: What Would You Change?

  1. Vanessa says:

    I would change society’s willingness to provide support for Autistics/Aspies/others on the spectrum that need it. Right now in the UK we are facing changes in disability benefits that look like they will exclude anyone who’s disability is not physical in their PIP assessment by multiple choice questionnaire. Yet some on the spectrum can be very intelligent but need high levels of support to reach their potential. And even the others deserve to get the support they need. It costs money and the government want to cut benefits to cut the deficit. We’re seen as an easy target.

  2. Debi Taylor says:

    @Jean – I love your comment! Awetism. We do learn so much from them. I am forever being reminded to “stay out of my hurried head” and remain in the present moment to experience joy. My children are truly gifts.

    @Vanessa – I hear and empathize with your comments as well! There is a reason I dove into this passion and mission to provide home-based, alternative supports and therapies for my son. I know it is frustrating to be in your shoes. Please let me know if I can support you in any way.

    @James – Thank you! What things stood out to you as interesting?

  3. John C Power says:

    I was introduced to you by my personal friend, Mr Jeff “Midas Touch” Gold.
    I am a father of a severly Autistic, non-verbal son, Justin who is 12.
    I am also a Founder & Executive Director of a 501 (c)3 on Old Silver Beach, Cape Cod, MA dealing with Acceptance, Transitioning Teens & Adults on the Spectrum, so as you can see Debi, “I get it!”
    What you wrote is inspiring. We, The parents, have to think out of the box constantly, and preconcieved images are being shattered daily. Hopfully in the next few months our cadets/students will have tales that I would gladly pass on to you to inspire & motivate other famlies too!
    Peace, And keep pluggin’ away, your never alone!
    Sincerely,
    John C Power
    Executive Director
    Project:Believe The Justin Power Foundation 501(c)3
    “We Speak For Those Who Can Not”@
    http//www.linkedin.com/in/thepower

    • Debi Taylor says:

      Thank you so much for your encouraging words! Please feel free to contribute any stories, ideas and viewpoints that would help support and inspire other families! I am also happy to trade links on our sites if you would like.

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