Voices of Autism: ‘Trapped in Your Own Head’

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 Amber Ayers, mother of Xavier, 7, and author of the blog Autism Supermom.

AyersThis story begins with a boy named Xavier with a big diagnosis of moderate-to-severe autism. Our family story revolves around autism. Not a moment goes by that we are unaffected by the “Big A.” As parents, it is difficult to accept such a large label on our sweet curly-haired boy. It’s nearly impossible to remember time B.A.–Before Autism. There is no getting off this ride.

Since before age 3, X has gone to intensive therapies, giving every ounce to say the word “momma,” and learning to live in a world that does not understand him. Challenges? We have more than a few, but what I want the world to know is the blessings that come with it all.

My family is by no means “cookie cutter.” We strive daily to do our best while overcoming obstacles that few who have not lived it can imagine. I just desire understanding and acceptance. Don’t feel sorry for me because my child has autism, feel love in your heart for a boy so intelligent, with so much to say, but who can’t get the words out. Be amazed by the obstacles he overcomes daily. Allow him to impress you with his computer genius. With a smile that could light up any room.

X is learning to speak more clearly in his own time. He can’t be measured by any “normal” progress chart. His vocabulary consists of, at most, 20 decipherable words. Often he is very loud and vocal, which throws some people off. There is no doubt in my mind, however, that he has so much to say. Imagine being trapped in your own head, unable to fully express your needs, wants, desires. My son has learned such independence. He is unique, graceful, genius, and beautiful.

With the birth of his baby brother, X has learned that he will have a best friend for life: a bodyguard, a videogame comrade, and most of all, someone to help him learn how to be a wonderful big brother. It has taken a year to get him to sit by his brother on the bed and not be anxious. It was 100% worth the wait, as he now hugs, kisses, and comforts his brother. He understands that the little King Dragon is here to stay. The baby loves his big brother ferociously, babbling for “bubba” all day long. He is our little King, a tiny warrior. Born in April, I am sure he is here to help make the world better.

My wish, this April and every day of the year, is for everyone to be more understanding and accepting of special needs. If you see a child having a meltdown, don’t assume he or she is bad. Lend a hand, or at the very least, a friendly smile. Educate yourself on something affecting 1 in 110 children. The future depends on learning to accept people as they are. If we learn to embrace autistic individuals, our world could be extraordinary.

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 Alysia

    On April 16, 2011 at 11:29 am

    What a beautiful story you shared here. Your boy is adorable.
    I feel like you do – that in my other children, my son has friends and protectors for life. Thank you for telling your story here.

  2. by Spectrummy Mummy

    On April 16, 2011 at 1:49 pm

    It took my girl a while to warm up to her brother too, it was such a relief when she finally did. The best of luck with overcoming those many obstacles. I’m sure you will with so much love in your heart.

  3. by Nidia

    On April 16, 2011 at 2:17 pm

    He is so adorable! My oldest ignored her youngest sister for a long time. And now they are the best of friends! (Well like all sisters, they have their moments.) Beautiful story, thanks for sharing!

  4. by Sylvia

    On April 16, 2011 at 3:03 pm

    Your post made my cry. You nailed it Amber….out of something so difficult comes incredible beauty. Our kids have pure hearts…no hidden agenda, they are honest and love unconditionally. They are these beautiful souls that teach us daily.

  5. by amy jo

    On April 16, 2011 at 7:26 pm

    I love you Amber:) Thanks for writing this…our children are amazing xoxoxo Give the boys kisses for me!

  6. by Karen V.

    On April 17, 2011 at 6:11 pm

    Oh Amber, this post is spectacular! Your son’s photo is beautiful and your words could not be more true! Our boys are trapped inside and struggling and working so hard each day to communicate and integrate in this fast-paced world. With love, patience and understanding by the world, they can reach their full potential. We can only reach those goals by dispelling myths and providing knowledge which spreads awareness and breaks down the barriers caused by ignorance.

  7. by Amber Ayers

    On April 17, 2011 at 7:44 pm

    Thank you all for your kind words. I sincerely believe that together we can help educate people on the miracles that are our children :)

  8. by Barbara Manatee

    On April 18, 2011 at 10:58 pm

    Great point about “cookie cutters” – it goes the same for Autism too – definitely NOT a cookie cutter disability. Acceptance and understanding is so important…

    April is Autism Awareness Month. I am dedicating my blog all month long to Autism.

  9. by Tawny Boyd "Zaders Grandma"

    On April 20, 2011 at 9:46 am

    Thank you Sweet Girl for your beautiful words. I am honored and blessed beyond words to call this marvelous child my Grandson. He is everything his mom wrote about him and more. Loves to you and Kingy every moment of every day.

  10. by Jennifer

    On August 18, 2011 at 4:16 pm

    This is special..it brings you into a world of understanding of what is acheivable and good when you know that Autism has perfected your belief in life..this article gives you Hope in the time of Despair…Chin up Shoulders back X is a soldier to this world