November 22, 2011

He is eight-years-old.

“Autism” has been spoken in my home for seven of those eight years.

Autism has wreaked havoc – on my son, on his sister, on my family, and on me.

My life, when I choose to go beyond the confines of my home, is a never-ending public service announcement.

This is what autism looks like, it says.
Real, down in the dirt, never let up, autism.

I am tired, and so this post might seem cliché. But parenting a child with autism is a lot like swimming upstream -- or floating in the ocean.

He is eight-years-old.

And I am still wondering: what is it that I am going to hang on to?

I look in all directions.

I take note of moms who embrace their faith, who turn to scripture and prayer and find not only strength, but reasons to hope and reasons to praise.

I take note of moms who embrace the fight, who spend their midnight hours reading every book, who wear out the tread on their tires by taking their children to people who claim to have found answers for others, who buy the supplements and the gluten-free foods.

I take note of moms who embrace a mission, who battle the insurance industry and lobby Congress members, and raise their voices in support of this growing community of families who see autism impact the lives of our children in debilitating ways.

I admire them, all of them.

But I am not one of them.

It is not something I am proud of.

I am part of that barely-hanging-on group.

I once fought with an insurance company, only to be shot down.

I have requested more services from a school district, only to be shot down

I have moved with my children so that my son could have ABA services, and I have driven him to multiples therapists … and there is autism, so very real, so incredibly disabling, still such a royal pain in the ass, robbing my son of so much.

I wish I could say that I have found resolve and strength from a renewed faith in God. But I have not. I do not hate God. But I have questions, big-time questions, for Him should we ever meet.

I wish I could say I have searched tirelessly for answers.

I wish I could say I have really advocated for my son in the way he deserves.

But I have not done these things.

I am living in the day.

He is eight-years-old.

And I am still wondering: what is it that I am going to hang on to?

1 comment:

  1. My boy is 8 years old too and I also wonder often what it is that I am going to hang on to. I hope you don't mind but you inspired my blog post being published tomorrow and I have linked to you in it. You are advocating for him, that is proven in the school talk posts you have published. You are doing a great job. Somedays I think just getting to the end of the day still in one piece, still breathing deserves a medal! The OT told my boy that when he gets to 8 years old he will begin to have more control over his emotions...I am still waiting :( .