Sunday, August 12, 2012

The Conspiracy of Silence

This is a belated father's day post and rant.

I couldn't help but think when I read this New York Times blog post posted last father's day.....

Sometimes I resent Bil's parents (my in laws) so very much because they just don't want to LET GO.

My father in law claimed he had "everything all prepared" for Bil.  When my father in law died, we found out he had done:  nothing.  Absolutely nothing.  Never got him on Medicaid, although we found out later Bil was the ONLY PERSON in his sheltered workshop not on Medicaid. (Why does that matter?  Because you can't get service coordination, most services without Medicaid eligibility.).  By the time this happened, budget cuts had started and we really had to struggle to get him onto Medicaid.

Left Bil's mother holding the bag.

He hadn't seen a dentist in years and had bad breath that could knock you over.

Didn't they ever smell it?  I couldn't even hardly ride in a car with him without gagging.

She did what she could after her husband died (and yes, Bil did finally see a dentist) but now she is in her 80's, has increasing health issues, and is more and more frail.  Yet she won't let go.  We (Bil's brothers and sisters) have to be responsible for Bil once she is dead but she just assumes this is going to happen by some kind of osmosis.

But then, I get to thinking some more....

We are fortunate in a way though that Bil's Mom still wants to care for Bil with all her heart and soul.  Because that's the way "the system" is set up.  Never mind people in their 80's....I have read about people in their 90's caring for their children with autism!! It has to be so very hard, with failing eyesight, failing ability to walk, failing hearing....and they have this burden, which state governments are more than happy to let them do WITHOUT ANY HELP.  Although said parents are saving the state millions.

Should the state help?  I guess that is the basic question here.

You know the saying that "it takes a village to raise a child?"  It also takes that village when people can no longer shoulder a burden.  They deserve that help.

They deserve to be able to put that burden down.

And, to flip this again, parents also need to help their non-disabled children ease into their burdens.  Don't just assume it will happen by osmosis.

Sometimes all of this just makes me want to scream. 

The conspiracy of silence.  The elephant in the room.  I am so sick of it.

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