Tuesday, October 4, 2011

Kind of sad...

I don't talk much about my work.  Mostly because there's not a whole heck about the work to talk about.  What is rather interesting is the family I work for.  I've blogged before about the three brothers.  But I don't mull over them frequently.  I do think quite frequently about one of their off spring.

The oldest brother has kind of a sad family story (apart from his amazing brothers).  He and his wife led wonderful lives, but their children- not so much.  Their only daughter "died" when she was only 25.  No one here is quite sure how.  Mysterious illness (it was in the 60's, so this is completely possible).  Suicide?  Could be.  We'll never know, I'm sure.  It's their son I think about, though.

Here is a young man who would have had the world.  His father was a billionaire business man.  He flew from NY to Cleveland to Florida to Europe on whims.  His mother was a beauty.  But their only son has Down Syndrome.  Rather severely, if the doctors reports are accurate.  He will permanently be 4 years old.  Now, this in itself does not make me sad.  I know a few people with Down Syndrome who I think live really happy, fulfilling lives.  (one makes eyes at LG during church each week.)  This boy had led quite a sad life, though. At least to me, it's sad.

Because he was born in the 50's, the doctors convinced his well to do parents that he would be much better off in an institution.  They couldn't possibly care for him in their home.  He'd be happier at a "facility".  And so he has been.  For the last 60 years.  He's lived at a few places, all rather posh, but still institutions.  He never had known a "family" life.  Which gives me a pit in my stomach.  His father used to visit him regularly (at least monthly), but since he's passed, cousins and sometimes his Aunt go visit "when they can".  They send gifts on his birthday, and holidays.  But they are not there to see him open them.  He lives with nurses, and health aids.  His friends are other people who mostly do not know a life at home. They all have each other, which is something I guess.

But when I think of him, my heart sinks.  Because he has the mind of a 4 year old.  Which is an amazing thing.  LG is not yet 4.  He understands family.  He understands home.  And I don't mean as a building.  He understands that home means comfort, and Mama and Papa, home means good smells and hugs and little brothers and being safe.  He knows that home is not just a place.  He knows that he feels different about home than he does about school.  (side note:  for the first time in his life, last week LG realized that when he felt sick, all he really wanted was to go home)  At 4, you understand feelings.  At 4 you know you are a person separate from your parents.  You begin to understand the world.  You can feel hurt, or slighted, or insulted.  When you say, "He has the mental capacity of a 4 year old." it doesn't really sound like much.  Unless you know a 4 year old.   4 year olds dream amazing things.  Airplane rides and jungle adventures.  When you're 4, everything is possible.  And when someone tells you it's not?  4 year olds don't really understand that.

It kills me to think that this poor little boy (because even though he's nearing retirement, he will always be a little boy) has lived his whole life taken care of by strangers. That he relies on their kindness to make him feel better when he's sick, or feel special on his birthday.  I see people with special needs all the time, with their families.  You hear the stories on the news of their success.  But here's a little boy, with all the money in the world, but no one to really love him.  And quite frankly, though I never had the chance to meet his mother, I can not for the life of me understand how she let this happen.


Jan said...

That is so sad. I can't understand it, either.

Sprite's Keeper said...

Surprisingly, I actually do understand. My grandparents had to do the same thing with my uncle, whose mental capacity was roughly the same as this man you write about.
Back in that time, that was how they did things. Parents weren't given as much information to help them take care of their kids, just told that it would be better for the child and the family dynamic if the "abnormal" one was removed from the home and placed in an environment with round the clock care.
Over time, the institution BECAME the family. My own uncle can recognize his nurses and volunteers but never me when we visit. He may or may not recognize his own brother, but always wants to go back to his group home where he lives with like-diagnosed residents. There, he paints, has a job, eats well, a bit too well, and relies on his support system for his needs. He laughs, he smiles a lot, he has his violent moods as well, and there's someone who knows what to do at all times.
I used to hate the fact that he was there until my dad explained it and I spent a day with him at his home as a teen helping out (I had a volunteering assignment in high school) and saw just how much supervision and help he needed. Then I understood what my grandparents went through. My grandmother blamed herself for years that she wasn't able to keep him by her side, but she would not have been able to keep him thriving at the time.
Times are different now. We have information at our fingertips and can become our childrens' advocates for almost any issue. I would never give up a child for this circumstance, but I don't blame my grandmother anymore for allowing the state to take my uncle.

Sprite's Keeper said...

PS. This also happened in the same timeframe, late 50's to early 60's, which is why it struck me as so relevant. Sorry for omitting that. :-)

blueviolet said...

I suspect that happened back then much more so than it ever would now. My aunt was in an institution as well, but she didn't have Downs. She was severely retarded. (Is that a proper term anymore?) Anyhow, I never really remembered that until you just said this, but I suspect it's just how it was done. My dad visited her every week and sometimes he would let us come along, but she wasn't all that aware of anything.

The Crazy Coxes said...

This is totally sad. I agree with you! Fortunately, we have a much better understanding of disablities today than they did in the 50's and 60's. Of course, nw we understand that each person, whatever their capacities are, is a vital part of the family.

gretchen said...

I fear that Sprite's K is right that it was common practice then. Which makes it all that much sadder.