Wednesday, June 18, 2014

What do you do?

I got asked.

 I knew it was coming because I was second in line. I had a full two minutes to think about it.

"I'm retired."

It was all that I could come up with. 

Until I heard "I wish I was retired, too." That lit my fire. 

Nothing makes you realize the absurdity of your own statement like a good reflection.

Plan B.

"I'm retired from ____. I'm a full time student. I'm a stay at home Mom to a four year old boy who is severely autistic."

It still wasn't enough though. 

"What do I do?"

Nothing really. 

I don't "go to work."

Don't go shopping.
Or out to restaurants.
Vacations.
Coffee dates.
Pedicures.

What do I do?

I wake up a half a dozen times a night to make sure my son doesn't get hurt during night terrors.

I chase him when he bolts, often grabbing him by the collar right before he runs into parking lots or streets. Because he won't wear a leash and he's too big for me to carry him around like an infant.

I hold him like a yogi-Jedi master-pro wrestler when he's having a meltdown. I strain back and stomach muscles doing it.

I make certain he doesn't eat cat poop and cat food. 

I decide which counters he can lick and which ones are off limits. 

I take him to occupational therapy. And physical therapy. And speech therapy. And behavioral therapy.

I hide toys in bins of rice.

I plan his sensory diet.

I practice PRIDE skills.

I laminate PECS.

I help him line up his toys so he is perfectly, ecstatically happy.

I write his name on bathroom walls with shaving cream and teach him to trace it with his finger. And I make him wait 30 seconds before he can rinse it off.

I wipe his bottom.

I turn his straw a perfect 90 degrees.

read stories to him. 

I talk to him about the seeds in his watermelons and how they grow new watermelons. 

I tell him about G-d and I hug him and kiss him and tickle him.

I schedule play dates with children even knowing there will be fighting and screaming and meltdowns. 

I rub essential oils on him that I can't afford and I give him deep tissue massages even though it's my back, neck and muscles that ache.

I fail daily at teaching him how to comprehend danger or sing the alphabet or recognize sight words. I try everyday anyway.

I fail daily at teaching him how to ask for help or answer a question. I try everyday anyway.

I try. I fail. I research. I try again. And again. And again.

I read about and research everything he struggles with; SPD, expressive language disorder, receptive language disorder, lack of post rotary nystagmus, artic and phonological disorders. At night. In my quiet room. Waiting for the next time he needs me.

I live in an 18 hour per day time loop that is full of frustration and exhaustion and miracles.

I am determined that we will not survive this life.

We will conquer it.

I show him how to live in this world and I watch over him and guard him and teach him 24 hours a day. Not because I am super human or paranoid or have nothing better to do. Not because I need to be needed. Not because this is the way I thought it would happen. Or because this is the way I planned my life.

I do it because I'm a Spectrum Mom.

And that's what we do.

RAWR.


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