Sunday, January 07, 2007

Baby, Its Cold Out There


Note: Well, in the words of Sally Field, they like me, they like me, they really, really like me! This blog will be moving to Revolution Health in the near future.

In the meantime, I'll be cross posting with a link to the new site.


Athos said: "We must carry each other. If we don't have this, what are we?" (Anne Micheals)

Lately, I live in fear for my sons. I don't know who will carry them when I'm gone. You see, David and Jamie have autism. Their early intervention years are over. Yes, they have improved. No, barring a miracle, they will never live fully independent lives.

I frequent a lot of message boards, and talk about autism to anyone who will listen to me--family members, friends, politicians, journalists. Even strangers aren't safe.

I used to find mostly polite receptions to my efforts to educate and build awareness. But the winds seem to be turning.

Lately, when it comes to discussions about developmental disabilities, I find myself defending my children's rights to exist. In increasing numbers, all people choose to see when they observe children like mine is a price tag. And they aren't careful to mince their words when they tell me that children like mine have no business stealing resources from children like theirs.

Ouch.

More and more, I hear people labelling children like mine as "drains on society." Their lives are devalued to the status of ones which never should have been at all. They are deemed bottomless pits who exist for no better reason that consume resources.

Those people don't live here, in my house. In spite of my extending open and frequent invitations, they don't bother to visit here. They are not privvy to the joys to be found in caring for people with autism.

They don't spend time with children like mine, nor do they want to. They haven't met the lives changed for the better, or the futures set onto a new path as a result of having known children like my sons.

People who harbor such hateful, elitist notions certainly can't stop to reckon the rich, spiritual treasures that are born from years of caring for a child you brought into the world who will likely never leave your side.

Most of all, I am feeling increasingly afraid because my baby boys aren't babies any more. They're turning into young men. And I am growing older.

Someday I will die.

I will leave two helpless dependents in a world that doesn't very much want them.

I've not been an idle parent. As an advocate, I had the priveledge of teaming with five other moms, and between us we did a lot to help build effective early intervention programs in SC.
Sadly, by the time those programs were in place and running well, my boys had left the years where such programs are deemed most effective.

People forget that their children's successes were built from my children's pain. And yet, I cannot begrudge those families, those children the joy they must feel in knowing they will walk away from the worst of autism's impact. I'd likely have done the same.

For my boys, early intervention has done all it will. I am satisfied that my children's legal struggles paved the way for other people's children to flourish. And I hate myself for hoping that these parents will choose to give back to the community that, but for the grace of God, could have been their children's.

My beautiful sons are pushing into their teen years. The odd behaviors and "oops" moments aren't so easily passed off as "cute" anymore. I worry about arrests. I worry about accidents. I worry about their odd actions being mistaken for assaults or violence or drug induced behavior. I worry about what happens when a sudden impulse moves into the realm of deadly action.

Most of all, I worry about who will love them when I'm not here.


Through the years, my sons have carved their niches into my heart as my prides and my joys. I've come to terms with my boy's differences. They are the growing into the young men their twin destinies deemed they must be.

But the world has not made this leap into reverent acceptance with me. My babies aren't defined as "autistic" in my mind anymore. They're just my sons.

And if, as others say, my hands are full with their care, then Iwill answer back that full hands are seldom idle ones.

Because my children have autism, I must change a world and make it ready to recieve them.


Why not join me on the journey?

1 comment:

mcewen said...

Right there in the wake of your surf dearie. [nice to 'meet' someone else who has two] So don't skip off to a new site without leaving a big post-it sign.
Cheers