Autism Understanding and Acceptance • This is what Autism is to me….

Autism Understanding and Acceptance • This is what Autism is to me….

Autism Understanding & AwarenessThis is what Autism is to me…

He rages. Has meltdowns on an unearthly scale. Personally I’ve been punched in the back of the head, about my back…my hair pulled, constantly head butted. I’ve been bitten numerous times. Screamed at. Spit on (angry raspberries really, but hey, spit is spit). Toys thrown at me, objects broken. The doors have been methodically kicked for an hour. Walls kicked. Mirrors slammed. Pages of books eaten…eaten. Siblings have had to be protected, learn to stand up for themselves much sooner than they should. The volcano that could erupt within a moments notice…

He has Autism.

He’s seen so many doctors, that when I try to recall them all, I’m very well aware that I’m forgetting about this one or that. I do know we’ve had two psychiatrists, a psychologist; a developmental psychologist, gastroenterologist, nutritionist, 5 physical therapists, 6 speech pathologists, 5 occupational therapists, a neurologist, an epileptologist, a rehabilitation doc, a pediatric surgeon, and of course our pediatrician. He’s had Botox injections, numerous EEGs, so many blood and “other” samples taken that I no longer count. He has twice the “acceptable” level of mercury, arsenic and lead in his system. He is missing two essential bacterias in his intestines. He’s allergic to gluten, wheat, malt, barley, casein, soy, egg, and peanuts. We’ve had a behaviorist literally run from our home, never to be heard from again. We’ve consulted and researched a number of other avenues. Countless resources sought….

He has Autism.

We don’t do the fun things we did before. Beyond the change to parenthood we see others take. It’s different for us. Everything is calculated. Routine a must. Only those that are intimately familiar with his triggers can be with him. Only someone who loves him as we do, who could control their emotions. Many days, it feels the fun has run from our lives. Chasing it as we do, hoping to a fingertips grasp before it gains more momentum, growing the distance between us. Relationships struggle. Friendships are hardly existent…who could blame anyone. It’s hard to be friends with another who is likely to cancel when they haven’t slept in weeks, or because of rages, or because things are just too hard. It’s hard to be friends with another who can’t attend a party because it’s beyond their child’s capabilities to navigate.

He has Autism.

The bills pile up. Piles. Of bills. Some years more than $15,000.00 out of pocket. Medicaid wait lists are long. Years long. Resources are slim. It’s expensive. SO expensive. Paperwork appears on your desk in mounds. Seemingly endless pages of paperwork, much redundant, all of it necessary. The story told over and again so that another resource is accessed; another resource that proves useless…more paperwork appears. You begin again. Pay again.

He has Autism.

And I love him more than words could allow. I respect him. I honor him. I accept him. I see the beauty within him.

For he sees the beauty I had already forgotten. Long since lost on my thoughts that have turned to adulthood. The wonders of life. The awe of animals, of what men make. The intricate details taken in one piece at a time, finally forming into the magnificence of whatever he sees before him. The excitement building as the overwhelming warmth he has for this beauty overtakes his senses, so that he must share. He yells it to you. Points. The breaths he takes to allow his body to envelop the scents the world has to offer. The noises he muffles to keep their piercing difference appreciable.

He has Autism.

His smile infectious; you’ll find him smiling more times than not. The duty he charges of himself to note what’s right and wrong, sacrificing himself in the fight. The enthusiasm he has for other children. Adults. Others who have yet to absorb this beautiful world into the realm of normalcy…those who can imagine….he wants to play with them. He longs to play with them; to laugh and run, sing and dance with them. The way he can see that single person who has dismissed the world, and reclaim them, bringing a spark back to their eyes in a gesture. His laughter will catch you, his sense of humor will surprise you…the kisses he gives are warm, loving. He loves. He. Loves. Us. He wants closeness. To touch. To take it all in.

He has Autism.

When he touches, when he reaches out, he does not wish to be rejected. Discarded. Scowled at, scorned, damned. He does not wish to be judged, hated, misunderstood. When his body refuses him the luxury of walking through a brightly lit store…when the bonds forged in gatherings are negated as his brain rattles with too much to accept, I hope he doesn’t see your glare. Your stare. Your silent words of disapproval. I hope he knows not of how you judge him, thinking of him as spoiled, as having parents unwilling to ‘discipline’, to take charge of this boy who screams and throws himself to the ground.

I hope he believes that you see the pain brought by what you hear as background chatter that, for him, stabs his ears…the wrath of pain brought upon his body from the slightest increase of noise, of commotion, conversation, lighting, smells. I hope he believes you know this isn’t his choice; that this isn’t the child paying for the sins of his parents. When you’re cruel. When you say mean things, talk down to him or misuse the trust he’ll have in you, you should know he hears you.  He knows what you’re saying, how and why you’re saying it.  You wouldn’t say it to another child, yet you choose to say it to him.  I hope he doesn’t absorb it. I hope he believes that you see the beauty and love within him as he chooses to see the same within you.

And so, I write. To you. So that when you see him, another child or an adult who embodies the meaning of strength for what it takes to manage a day…another challenged with Autism…I write with the hope that when you see J you are not only Aware that he has Autism. For it is my dream that one day you will Understand him. You will Accept him. That you will move forward from Autism Awareness to Autism Understanding and Acceptance.

Please. For him. Take this day, this letter and make a choice to walk forward.

© Gina St. Aubin

(This was written in a world wide effort for Autism Understanding and Acceptance. Find out more here).

About the Author:

Gina St. Aubin is a former Victim’s Advocate who now advocates for those with intellectual and physical challenges. Her eldest son is diagnosed with Cerebral Palsy, Autism, Sensory Processing Disorder, Electrical Status Epilepticus during Sleep / Landau-Kleffner Syndrome (a rare epileptic disorder causing verbal aphasia) and Developmental Delays. In June, 2012, her son also underwent a successful hemispherectomy. Gina is the editor, author and owner of Special Happens, serves as a member of the Board of Directors for the SPD Foundation, and resides in Colorado where she is a mother of 3, wife, blogger, writer and special needs advocate.

15 Comments

  1. Samantha Battis April 2, 2011 at 2:22 am - Reply

    Beautifully said. Perfect in every way. Thank you.

    • Gina April 3, 2011 at 12:58 am - Reply

      Thank you Samantha. Thanks for coming by.

  2. Stuart Duncan April 2, 2011 at 8:22 am - Reply

    Perfect, absolutely perfect! Thank you so much Gina for this and your amazing support and huge effort to raise understanding and acceptance for Autism.

    • Gina April 3, 2011 at 12:59 am - Reply

      Stuart…you are to be thanked. A community united. One strong voice. I am thrilled to have been a small part. Thanks Stuart!

  3. Big Daddy April 2, 2011 at 12:36 pm - Reply

    Well done, Gina!

    • Gina April 3, 2011 at 12:59 am - Reply

      Thanks BD!

  4. Jeanette Lee April 2, 2011 at 7:31 pm - Reply

    Awesome, inspring, and moving ! THANK YOU !

    • Gina April 3, 2011 at 1:00 am - Reply

      Jeanette, thank you. I do hope it helps get the message across.

  5. Meredith (Bird) April 2, 2011 at 7:50 pm - Reply

    Just Beautiful, so creatively written, such a powerful feeling emanates thank you for sharing your experience Gina 😉 xo

    • Gina April 3, 2011 at 1:01 am - Reply

      Bird~ Thanks SO much for reading (and commenting).

  6. Deanna April 3, 2011 at 10:48 pm - Reply

    This brought me to tears. Absolutely beautiful.

  7. fabiana April 9, 2011 at 9:37 am - Reply

    I admire you!

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