The Part I Havent Figured Out

This is the part I haven't figured out yet.

Friends, I can spin beautiful words on a page about all the amazing things that autism has brought to our lives. I can give you a glimpse into how we have overcome the day to day issues.

But I don't know how to do this.

I don't know what to do as I watch my child sink it sickness, utterly clueless about what's wrong.
I see the way he holds his eyes differently. I watch as his words quickly slip from vaguely being able to tell me something is wrong with his stomach, to no words at all and just groans of severe discomfort.
He swaddles himself in a blanket and stares blankly at the wall. He is spending all his energy on whatever is going on inside him, and there is nothing left to even ask for one of his favorite toys.
My mom-gut sounds an alarm that this is a different kind of not communicating. This is a different kind of tired. There is something really wrong.

And with that comes anxiety that I think only special needs moms understand.
I fear him getting a high fever because I can't even trick him into taking the meds to bring it down. I know if we end up at the doctor, I will be shamed for not doing something so simple.

I feel like I'm preparing for battle remembering back to every doctor visit before.
All those months when something was really wrong, and no one listened.

I know that unless I'm lucky enough to get a doctor who passionately understands autism, I will be stuck trying to explain that my mom-gut is sounding an alarm and that I need their help figuring out what is wrong.

I'll have to feel my face turn red with frustration and sadness when they say "its probably nothing" or "further testing is irresponsible to the insurance company."

When we end up back at the doctor again, as it always seems to happen, I'll have to go in with my Google Ph.D. and start asking for more testing and more answers, and pray that the doctor will help me connect the dots.

I'll deal with the shame and embarrassment of being looked at as an over-protective hypochondriac-type mom.

I'll cry tears of relief and joy when we finally meet a doctor that can see past the autism, and what should be, into what is actually happening.
I'll wonder why there aren't more doctors like her out there.

I still don't know how to do this.
I don't know how to be what the doctors need to find answers.
I don't know who I can trust to help me listen when there are no words.
I don't know how to be his words.

I don't know how,
but if this journey has taught me anything,
I do know that I will.

Comments

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