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Monday, February 22, 2010

Whatever Makes His Day Easier.....Right?

As Monchichi gets on the bus, he takes his sweet time picking out which giant seat he wants to sit in.  I tell his bus driver, Veronica, how nice it is of her to let him spend a few moments figuring out the perfect place to plant his tiny keister. 

"Whatever makes his day easier," She says with a smile. 

To her, it is a simple statement. Black and white.  He's got a tough gig with all of his disabilities, so if sitting in a different seat each day takes the edge off, why the hell not?
 
Whatever makes his day easier.

To me, it's a concept I struggle with daily.

How much is too much?
How much is not enough?
Should I give in, because he deserves some slack
or do I push him even harder because it's my job to challenge him and prepare him for the cold, insensitive, biased world he will inherit someday?

My inner dialogue on this matter usually goes something like this:

"Crap."

I don't know if what I'm doing as his mother is enough, or too much, or the perfect amount.  I'm totally lost people.  I do know that he's got a schedule most workaholics would find impossible to keep up with.  If he's not in class, he's in speech therapy, or occupational therapy, or physical therapy, or behavioral intervention therapy.  Every. Single. Day.  He barely has enough time to hiccup before his next appointment; not to mention that the things that come naturally to you or I are akin to climbing up Mt. Everest, barefoot, for him.

Which brings me to this fine line I tread upon each time I am faced with a parenting decision.

Do I let him have the buttered noodles anyway, even though his refusal to eat dinner is in direct violation of our official agreement, because he's tired, because he's frail, because I can't stand to see him fall apart over something that I have total control over? 

Do I let him take over my husband's side of the bed because he needs extra cuddles and kisses and someone to protect him as he drifts off to what I can only hope is a slumber sans the burdensome symptoms of his daily setbacks, even though I no longer shave my legs since spontaneous romps between the sheets are not really a concern with a 2nd grader passed out between us? 

Do I turn the other cheek when he ignores my demands to "stop jumping on the bed," or "leave those soda cans alone," or "get down, let go, use your words?" 

Or, do I stand my ground, keeping my focus on the prize; a little boy who is learning, one "NO" at a time, that there are rules, and boundaries, and consequences, and that I will not undermine his future by giving in to those enormous blue eyes every time they well up in dramatic frustration?

Like I said.
I don't know what the hell I'm doing most of the time.
My love for my son comes naturally.
The rest is mostly eenie, meenie, miney, mo.

I watch as the bus drives away, waving and blowing kisses not unlike someone watching helplessly as a loved one is being deported by armed security at the airport, trying to ignore the knot in my throat that appears each morning as I send my son to a place where he relies on others to take care of him. 
(Not my favorite part of the day y'all).

I am deep in thought as I walk back into the house
realizing that my role is more potent than letting him have his way with a seat on a bus
or his favorite snack before dinner
or another episode of a show he didn't really earn

I am the one that has to
enforce the rules
follow through with the consequences
and gently nudge into shape
a little boy who needs me to do
whatever it takes
to make his entire
Life
easier.


 



4 comments:

Sari said...

I think you're awesome and doing a kick ass job! You love your son so much that it hurts and that alone matters a whole lot!

Betty said...

I get very defensive when someone says that I spoil my autistic grandson, whom I have raised. He is 21 and I have learned to pick the battles, which works with all kids. I say to those people, mind you own freaking business, you don't know.

Lisa said...

This is what I first read of your blogs on FB, posted by autismspeaks.org, Then I was hooked. I can't explain my words, so you just did a perfect job... thanks for sharing it makes a difference in my "bubble"

Cathy said...

I sit here after reading this post dumbfounded with how much I connect with you--your thinking, your writing style, your parenting style and your son. It's like you wrote what's been in my head.
You're amazing.
I am a mom of 4 (3 girls--typically develop.) and my son, Jack, who is 8 and living with autism. Thanks for validating the thoughts in my head!