MY WORDS ABOUT AUTISM

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April is Autism Awareness month. I’m not really in the mood to celebrate. To be clear, autism and I are not friends. I do not want to raise awareness. I really have nothing to celebrate. In fact, I’ll just say what everyone else won’t: I hate autism.

I hate the fact that a label turns heads. That a label gives people reason to ignore. To exclude. To dismiss. To be afraid.

I hate the fact that one giant Autism Spectrum Disorder diagnosis includes precious children who may never speak and who may need 24-hour care and yet also kids who will go to Harvard because their brains are virtual computers.

I hate being stuck somewhere on the mild end of an autism diagnosis. So much so that many don’t believe it and others demand he be like everyone else.

Neither too extreme nor too brilliant. Not different enough to belong in a special class, but definitely not normal enough to be accepted.

I hate that there is no place for my son. I hate that we have tried with such hope the best schools, the most amazing churches, the most inclusive sports teams, yet still nothing fits.

I hate it when those in authority could budge just a little and it could change a life, but it is too hard to accommodate. Too tough to consider. But we don’t do it that way, they say.

I feel claustrophobic and I want to punch a wall and I want to scream in everyone’s face “IF YOU WOULD JUST STOP AND APPRECIATE HIM!” “IF YOU WOULD JUST TRY TO UNDERSTAND HIM!” “IF YOU WOULD JUST BE HIS FRIEND!”

To him I would say, “IF YOU WOULD JUST PICK UP A HOBBY – ANY HOBBY – AND DO SOMETHING!” “WOULD YOU EAT SOMETHING BESIDES BREAD?”

The world is squeezing this mama from every possible direction. And I’m just plain weary.

I hate having to advocate for my son. Advocate again and educate more and advocate tomorrow. I am strong and I am fierce and I am passionate. Just not today.

I hate that sometimes the tears just come and they won’t stop. Sometimes they are his. Sometimes they are mine.

I hate seeing the younger brother torn up inside because he wants people to appreciate his brother the same way he does. To see him for his amazing-ness and great heart and super talents. I hate that his heart grieves as much as mine. His is too young a heart for that. Yet his heart is so big, he just can’t let it all go.

I hate that I have to explain away behavior. To everyone. To my family. My husband. The school. The youth pastor. The neighbors. The dog.

I hate that I don’t understand the behavior myself. I hate that sometimes it embarrasses me. I hate that I get so fed up sometimes, that I resent him.

I hate that he is so confusing. Even he doesn’t understand his behavior either sometimes.

I hate that I can’t convince him to try guacamole. Or hunting or fishing or rock climbing or soccer. Or anything new.

I wish this world would just slow down for him.

I hate all of the skills that he must learn the hard way. The expensive way. The time-consuming way.

I hate it that I love him so much I would do anything for him.

I wonder if he hates autism as much as I do.  I think today, he just might.

Tomorrow I will celebrate him. It is, after all, his birthday. Now that’s something to celebrate.

Happy Autism Awareness Month.

4 thoughts on “MY WORDS ABOUT AUTISM

  1. Amanda,
    What real emotions. I’m sure writing this exhausted you . I’m right here with you, and you with me , walking this journey together. God has blessed my life with you! God has blessed you with kindness to be the Mom G needs . You love him so much . He’s a kind and handsome young man that has God’s heart. Thank you for making a loving and accepting Home where he feels comfortable being himself.

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  2. I can so identify with these emotions. I am not a place where I see autism as a gift, as I’ve heard some say. I would totally take this away from my daughter if it were with my capacity to do so. We just received her diagnosis 10 months ago at age 13 and I’m still processing it all even though we knew for years this was what we were dealing with. It’s hard being an autism mama but not as hard as putting myself in their shoes. Thank you for your honest feelings.

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    1. You are exactly right, Jill. It is hard being an autism mama, but their shoes are heartbreakingly more difficult. I write for them. Hang in there and may God give you the strength you need today. 💗

      Like

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