Saturday, April 30, 2011

To a World War II Vet 1921-2011

A friend was widowed earlier this week.  Her husband, a member of the Greatest Generation, passed on at the age of 90 after a long life including a stint in the U.S. Navy and owning his own printing business.  He loved nature, hunting and fishing, family, and friends.  He proudly belonged to the American Legion. You could not have asked for a fuller life.

My friend and her sister have always been so supportive of my involvement in the life of Bil, lending encouragement, sending me articles to read, and providing inspiration.  I didn't know her husband as well, and the last 6 years of his life were struggles to fight a couple of strokes and 4 bouts of cancer.  My friend was his loyal caregiver during this entire time. Even when it became clear he needed 24 hour nursing, she constantly visited him at the nursing home she reluctantly put him in, bringing joy to her husband and many of the other residents when she brought his dog to visit him.

One of the things she was planning to do for the nursing home residents, when her husband suddenly took a turn for the worse, was advocating for the replacement of some very badly worn coffee carafes.  One of the last things she did for her husband was to get his room changed when another resident died, so he could feel the sun on his face one last time.

The small carafes.  The sun.  We take them for granted but anyone in a nursing home loses control over many of portions of everyday life.  And with that I mention a trend of putting people with developmental disabilities into nursing homes before their time.  Could I ever imagine Bil in a setting where he would have to beg for sunshine because his roommate didn't want the sun shining?  But it happens.  And, although this was a "good" nursing home and had a caring staff, "stuff still  happened".  Without his wife at his side, this veteran of World War II would have had an even harder time of it.

Our developmentally disabled deserve care and respect, too.

So today, I gladly deviate from the purpose of this blog to pay tribute to a Friend of Bil's.

Wednesday, April 27, 2011

Phoebe Snow and Random Thoughts

I haven't posted about Bil lately....I do have some items to report but first, I wanted to pay some tribute to the singer Phoebe Snow, who died yesterday.  She was close to my age.

Not long after I was married Phoebe gave birth to a severely disabled daughter.  Phoebe devoted her life to her daughter, who was not expected to live long.  Her husband, soon after the daughter's birth, left the marriage.

Could I ever have had that type of devotion to a child?  I honestly don't know.  And in a way it reminds me of my mother in law and Bil, although Bil wasn't anywhere near the same type of disability.   I remember reading one of the evaluations done on Bil when he was a teenager, and the person doing the testing remarked on the "symbiotic" relationship my mother in law and Bil had.
Thinking about this story, I also thought what happens when people with disabilities have a musical talent.

If we think of entertainers with "disabilities" many of us think right off of blind musicians Stevie Wonder, Ray Charles or  The subject of blind musicians even merits its own entry on Wikipedia.   However, it is not as well known that Leon Russell has celebral palsy.

Did their disabilities make them more or less talented?  I suspect it is a combination of both.  It does make me wonder about the nature of the brain, though.

Bil does not have a musical talent but he does have a special talent of memory, and carries a perpetual calendar in his head.  It doesn't seem like something that he could use to make money, more than the pittance he makes at his sheltered workshop job. But.....there has to be something there, in his talent.  If only I can figure out what....

Friday, April 15, 2011

The Cuts are A Comin

We don't know about Bil and cuts yet (I'm sure we'll find out when we see my mother in law and Bil again next week) of the best advocates for autism in this area, if not the state, Sally Colletti, has lost her job at ACCORD in Binghamton due to budget cuts.

An example of the type of work she did for ACCORD can be found here.

Oh well.  Fewer voices for children with special needs.  Just as that population increases and increases.  We are all going to have to bite the bullet, true.  But we've only seen the beginning of this.

And for people of Bil's generation....with their elderly parents who desperately need help....this is really going to hurt.

Sunday, April 10, 2011

The Unsung Inspiration

An autism advocate in this area posted this obituary....I suspect this may be a family member of hers or if not, someone she met in the course of her advocacy.  Both women have had serious fights against breast cancer in their lives.  I am sorry Marcia Roth was not able to win her battle against that dread disease.

Unbelievable (the way I feel so dragged out sometimes, so stiff) that a person could accomplish as much as Marcia Roth did, a lot of it "after retiring".

I really should be getting off my butt, shouldn't I?  But some days it seems that just getting through the workday, I have so little "left" to give to others.  If I had to retire, and nowadays all of us of a "certain" age know that may happen to us, would I be able to devote my life to something like this?

I haven't written much about Bil lately.  But thanks to advocates like Marcia Roth, his life, and many other lives, will be better.

I can only hope my obit will say something similar.

Saturday, April 2, 2011

World Autism Day

Happy World Autism Day....I guess.

Yes, we can light it up blue, and I did wear blue is the color I feel a lot of times lately, for many reasons, some related to Bil, but not all of it.

There is still not enough attention being paid, I fear, to exactly what is going to happen when all those affected by the current "autism epidemic" grow up and become adults.  In our age of budget shortfalls and government cut backs, I am not sure many people have given this issue much thought.

Is our country ready?  I fear not.

But only time will tell.

Meantime, I read today about how autism has affected us all, in this article about Somali refugees in Minnesota and their fears regarding vaccination in light of a measles outbreak in their population.

We don't need a day....we need 365 of them, each and every year.  Just like the families who deal with this issue every day.  Some days I feel like I am totally stuck in quicksand when it comes to Bil, his issues, and his future.  I haven't blogged much lately for various reasons, but trust me, it is still very much on my mind.