SOC Sunday: Complacency

#SOCsunday

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Sometimes, I fool myself.  I get lulled into this world of almost normality, and i kinda forget the reality of my situation.

Not that this is a bad thing, really.

My son has autism.  we know this.  We have official papers saying this is so.  We get a special pass at Disneyland.  A majority of my week is spent in his therapy.

BUT

as he improves, he becomes more and more high functioning.  WHich is AWESOME.  But it lulls me into a certain complacency.  Which *could* be dangerous.

Lemme splain.

Part of my acceptance of Ben’s situation was an absolute VOW to live in the now.  I’ve posted about this before–it’s almost boring now.  But it’s true.  I don’t look much further ahead than maybe next month.  Sure–i’ve got Kindergarten in the back of my mind, but there still winter break and the following IEP before i even have to tackle that one head-on.  But right now my focus is Thanksgiving and family visits and making sure Ben enjoys his time with both his Grandma and Savta (my mom).

But when he’s doing well, I start to daydream a little.  I start to think forward.  You know–like parents do.    TYPICAL parents.

I know my other special needs parents will feel me.  We live in this amorphous world in which there are a million possibitilites for our kids–and we imagine them all–good AND bad.  and this is dangerous territory.  Because it can both get your hopes up too high, or drag you down into despair.

which is why we live in the now.  because a) it keeps us SANE and b) it’s the most fair option to our kids.  When you aren’t thinking ahead to future nobel prizes, or possibile instituionalization, you are letting your kid shape his/her destiny, serving instead as a tour guide instead of a dictator.

This is what i know:  Ben is improving by leaps and bounds.  In a way that *may* allow mainstreaming. But that doesn’t change the fact that he will always see the world differently.  and THAT’S what i need to keep in the forefront.

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That was my five minutes–but lemme add:  I know there is nothing wrong with getting your hopes high.  And mine are–believe me.  I expect this kid to tackle anti-gravity or some shit to the point of making Star Trek a reality (he gets very frustrated with gravity on a daily basis–to the point of meltdown sometimes.  It is his nemesis, if you will)

Yes, I hold him to high standards and expectations.  While I have no crystal ball into the future, I do know what this culture can do to a kid with special needs, and the last thing I want to do is mollycoddle him.  He already has very pretty manners–to which he will hold through life, even if I have to beat it into him during his teenage years.  And by beat of course I mean take away every electronic device he’ll own until he can “yes ma’am” me in his sleep.  We push him daily, which is factor #1 as to why he is improving  (Well, almost daily–some days he needs a break).

These thoughts were spurred on when I watched Horse Boy this week, and saw shades of Ben in their son, and I began to realize what I was doing.  Whether or not you have a kid with special needs, it’s an interesting flick.

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Categories: Uncategorized | 3 Comments

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3 thoughts on “SOC Sunday: Complacency

  1. Jen

    A very thoughtful post. It’s so difficult to really be in the now, I’m trying to do more of it myself. Be gentle with yourself!

  2. I don’t have a special needs child but I feel you – my child struggles with anxiety to the point we have her on medication – I know it’s nothing in comparison so I can’t really know what it’s like – but I’ve had days where I have to say to myself “focus on the now” and let’s just get through today. I hope that I haven’t offended you in any way – sometimes I don’t say the right things! I will definitely check out that movie – have a wonderful Thanksgiving with your family!

  3. I am not a mom of an autistic child but my neighbor is and I’ve gained so much insight from her. She’s realistic. Slightly optimistic. Basically, she appreciates when things get better AS they get better. I once asked her if she wanted to get involved with a charity that was working on autism awareness and surprisingly, she declined.

    She said, “You know, things right now are going well and for once, I’d like to not think about anything else.” And I totally got it.

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