May 1, 2016

No Greater Hell

I'm reading a new book, and so far I like it, and I appreciate the awareness it brings to high functioning autism.

However...

This quote annoyed me.

"I've met so many parents of the kids who are on the low end of the autism spectrum, kids who are diametrically opposed to Jacob, with his Asperger's. They tell me I'm lucky to have a son who's verbal, who is blisteringly intelligent, who can take apart the broken microwave and have it working again an hour later. They think there is no greater hell than having a son who is locked in his own world, unaware that there's a wider one to explore. But try having a son who is locked in his own world and still wants to make a connection. A son who tries to be like everyone else but truly doesn't know how."

OkayJust because a child is nonverbal, does not mean he or she does not want to make a connection. That thought is a huge myth and misconception of autism. It pains me to hear someone even suggest that they don't.

My son is low functioning and essentially nonverbal. He wants so badly to make a connection that he will physically hurt himself, or me, due to such intense frustration from not being able to communicate.  Just today, he clawed at MY face because he hurt HIS foot.    His intention was not to harm me because he was mad at me.  He doesn't know how to express what he's feeling so he lashed out in an inappropriate way.

Maybe I am being over sensitive here. I don't think so...but you know what? That's parenting.  I have stuck my foot in my mouth on this very blog. I don't believe this author to be ill intentioned.  I did some research, and as a far as I can tell, she doesn't have a son with autism.  I am going to continue to read this book because I think it will be good one. I wish that quote wasn't said, but more than anything I hope you are reading this post and understand where I'm coming from. 


To the point of the author, parents of low functioning children should not tell another mother that she is "lucky" because of the characteristics of her son with high functioning autism has.  No person, fellow autism parent or not, should pass judgement on the level of luck or hell we have with our autistic children.

Regrettably, I will admit that I have looked at other autism families and thought, "I WISH those were the extent of our struggles."  Some days, like when Brandon hurts me due to his lack of ability communicate, it is hard not to compare.  But it's not right.  As I go further into this journey, I realize more and more that there are so many struggles on all parts of the spectrum that we will never see.

The real truth is that there is no greater hell than seeing your children or a loved one suffer in any way.  Let's not compare battle scars here.  We special needs parents are licking our wounds - sometimes emotional and sometimes physical.  It's not about who has it harder...who is the luckiest or who is in the greatest hell.





4 comments:

  1. Amen, I always fall guilty of comparing with others and even secretly disliking other parents w/ typically functioning kids but its not right

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    1. I know that feeling all too well. Even though we know we shouldn't feel a certain way or don't want to feel a certain way, it's hard not to sometimes!

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  2. What is the book called? I looked for No Greater Hell and i'm pretty sure you're not reading a book with a buff shirtless dude on the front. :)

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    1. Lol! It's called "House Rules" by Jodi Picoult.

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