Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.


Sunday, April 29, 2007

The Tootsie Roll Fundraiser

Fridays are shopping days. Normally I shop in a frenzy between the hours of 4pm - 5:30pm so I can complete most shopping alone (minus children). Last Friday I chose to go ahead and pick up the peanut and take her along.

My first stop is generally Walmart. On our way in there were a couple of men, probably mid-30's to mid-40's both wearing yellow overshirts participating in a Knights of Columbus Tootsie Roll Fundraiser.

They were fundraising to support adults with developmental disabilities.

As a mother of a child with a developmental disability, I have to explain my perspective some. At the time of his diagnosis I was confronted with emphasis in doctor's scrawl of how this PDD thing is a "lifelong disabilitiy." Faced with an overwhelming amount of decisions and tasks at diagnosis, perhaps I flinched at this, but it didn't sink in.

Then later, reviewing our first PCA contract, again that lifelong thing is touched on. Their final note? "Client may require some amount of assistance for life."

And walking by this Tootsie Roll Fundraiser it dawns on me. What do children with developmental disabilities grow up to be? Adults with developmental disabilities.

Something so simple. My lightbulb moment.

Now I realize children with developmental disabilities can grow up to be many many things and that confining their growth into a small box is ridiculous and cruel. Please understand that my hopes for my son expand far beyond just being an adult with a developmental disability, but there is a truth embedded in this that is very difficult.

Autism is not a childhood disorder. Autism is a forever disorder.

I walked past this tootsie roll Fundraiser and did my shopping. And then as we left Walmart I determinedly walked to this fundraiser and gave my part.

And then, wiping away tears, I walked my daughter and our purchases to the car.

And I felt as though I were sinking.

But then again, perhaps I felt more free.

1 comment:

Camera Obscura said...

You cry twice: once for the child, for all dreams one has for every child that may never be: college, a job, a partner, 2.4 children, a house in the suburbs, grandkids, retirement, etc.

Then you cry for yourself, for all the dreams you had that may never be: moving to someplace warm to retire, retiring at all, travel once the kids are all out of the house, attending college graduation, wedding, grandbaby baptisms.

Then you go to work and educate yourself about what will be, what can be.