Friday, June 30, 2017

The Ultimate Conversation

We all will die one day.

There, I said it.

It's a truth we humans like to avoid  We use all kinds of euphemisms in describing it.  Passing on. Passing away.  Going to heaven.  Being promoted to glory.  Going to sleep in the arms of the Lord.  Taking a dirt nap.

Euphemisms don't work too well with people who are autistic.  Many of them take these euphemisms literally.

Yet, we were warned recently, we do have to talk to Bil about the upcoming death of his mother.  No, she isn't terminally ill.  But, she just fell again, earlier this week, and it's a matter of time.  That "matter of time" may be numbered in years.  Or months.  We just don't know.

But it's important to do it right.

For example, if you want to talk to him about his mother (who is elderly) dying one day, we were told you can't say to him "one day, your Mom will be gone".  That might well mean that she is going to walk out of their shared apartment one day and maybe she'll be back tomorrow, or the next day. 
No, it has to be in the sense that death is natural, and it is going to happen.

We need to prepare him for this most unpleasant event which will come one day.

One thing in our favor is that his father has died, so he is not a stranger to death.  But, after his father's death, little changed.

This time, everything will change.

So, the ultimate conversation will have to happen, and soon.

We just have to figure out how.

Friday, June 23, 2017

The Waiting Game #FridayReflections

Waiting.  It's the waiting game.

We have played it for years.

Waiting for decisions.  Will "Bil", my autistic brother in law, be accepted for Medicaid, a joint state/local medical program that is the gateway to various services that will help him?

The days pass.  


He's rejected.  We reapply.  Another wait.

Finally, good news.

Now that Bil's been accepted for Medicaid:  we apply for a program where Bil can be worked with one on one.  But there's nobody who wants to work with Bil.  These programs find it hard to find workers.  It pays so little, in the high cost of living area where Bil lives at the.

We wait, and wait, and they never find anyone.

Years pass.  More waiting.  More waiting lists.  Waiting lists for housing, a waiting list that is discontinued, and then there is no more waiting list.  And then, there is a list again.  Who knows what is going on?

Will my husband we named as guardian for Bil, who never has had a guardian until now? (yes, but that also put additional burdens on my husband, Bil's oldest brother.    It takes months to gather what is needed.  Finally, the lawyer puts in the application.  Another wait.  And what happens if something happens to Bil's elderly mother, in the meantime?

There is a hearing.  The application is accepted.  But then there is more to wait for.  There always is.

We wait and wait and wait, as the days of our lives tick away.

And now, the United States Senate considers legislation that will cut programs that benefit Bil, and others like him.  We can protest, but, more than that, we must wait, and wait still again.

 “Sometimes waiting is the hardest thing of all.” - Luanne Rice
 Blogging for #FridayReflections, 

Friday, June 16, 2017

A Total Eclipse

How many of you have seen a total eclipse of the sun in person?

Today's prompt, for #FridayReflections, is:  Write about a moment in your life you wish you could freeze and preserve.

I thought and I thought and I thought.  But at first, I couldn't think of one!

My memory is far from perfect.  And, as I age, it seems that my memory becomes balkier and balkier, as if my brain was a hard drive that was getting full.  There are a lot of happy moments in my life that I would love to freeze and preserve.

But then, it came to me.  This is my moment -  The total eclipse of the sun that I saw in March of 1970.  That's the moment I want.

Actually, the eclipse was the climax of a trip I took with members of my high school class (a specialized high school for those talented in the sciences) and others, several hundred miles, to see a total eclipse of the sun in North Carolina.  It was wonderful being away from home overnight.

And more wonderful to see a total eclipse, on a sunny day.

It's hard for me to describe an eclipse, because the moments before, during, and after totality are such an experience that words fail me.  I'm not the only one who feels that way, either.  

I am not a spiritual person, but in those moments, I felt something I have never felt before or after.  Don't be fooled by magazine articles that treat it as three minutes of "gee whiz, we can see a corona".  You have no idea what you are in for.

As the eclipse progresses, nature begins to realize something is not right.

Birds fall silent.  A wind springs up out of nowhere.  Even the people you are with stop talking  The air temperature drops and you shiver.  And then there is a wall.  You literally see the shadow of the moon sweeping along the ground (we were on a field in the stadium of a college.) 

The sun is obscured, a bright ring around it transfixes you, and you want to fall to your knees in absolute wonder.  Time stands still. You are chilled.  It isn't just the air temperature.

Dusk fell in the middle of the day, as scientists around me made their measurements and did their calculations.  They couldn't look up to see the beauty of what they were measuring. 

But I could.  I did.  And I wish that moment of totality, instead of lasting around three minutes, could have lasted forever.

This August, I hope to experience it again.  My husband and I will have to travel hundreds of miles from our home, but we are ready to.  This time, I will have my cell phone, but something tells me I won't be using it in those moments.

My autistic brother in law Bil loves science, and loves to see science documentaries and read science books.  How, I wonder, would he view an eclipse.  What would he think?  I could wish the eclipse was here where I live.

Perhaps we could have watched it together.

Maybe one day.

Join Sanch Vee and other bloggers for #FridayReflections.

Friday, June 9, 2017

Mistakes - #FridayReflections

You haven't lived if you haven't made mistakes.  Mistakes are how we learn, and how we live.

I have made my share of mistakes.  In fact, I can think of a number of mistakes my husband and I have made, when it comes to his autistic brother, "Bil". These include:

1.  Not getting involved in his life soon enough - when his father kept saying (when we tried to bring up Bil's future) "everything is taken care of"....well, it wasn't.  Actually, nothing was taken care of.  Surprise. 

2.  Not applying on his behalf for Medicaid, soon enough, because his mother didn't want us to.  We waited until his widowed mother was struggling, trying to pay for his medications (see #1 above)  that she had to say "yes".  Erroneously, she thought that applying for Medicaid was something that "decent" people didn't do.  But many people don't know that the major beneficiaries of Medicaid, a joint state/federal program, are the elderly, and the disabled.

 By the time she allowed us to go forward, the government had tightened up the requirements.  It took over a year, and a first rejection, to get him the benefits that could pay for his medications, and make other services possible.

3.  Exercise.  Bil never exercised.  When not at his sheltered workshop, he mostly stayed in his room.  Food became a recreation for him.  He loves to eat out.  With his mother, he did plenty of it.

We took him walking in the mall once, and his mother ws upset because he may have had an asthma attack.  We never tried again.

Yes, he has asthma.  But it has also been well controlled for years.

So, why would we want Bil to exercise more, something he doesn't seek out on his own?  For starters, he is overweight bordering on obesity. He does get a little exercise now, at his day program, the program he goes to twice a week (they have exercise videos he enjoys).

But last week, I saw something worrisome.

In our back yard, there is an Adirondack chair.

At a Memorial Day BBQ, Bil ended up sitting in one of our two Adirondack chairs.  The problem?

He couldn't get out of this chair without help.

Bil is in his late 50's.  If you can't get out of a chair in your late 50's, you have a problem.    I've received some education in fall prevention, and I know that your ability to get out of a chair ( a simple sounding thing if you are young)  can predict much about your life as a senior. You need that muscle strength.  Without muscle strength and balance, you become susceptible to falls.

Bil is starting to show signs of vulnerability to falling.  And now I know another mistake - we never paid attention to his physical fitness.  His mother has a long history of falls.  Falls are deadly for seniors.

And now -what do we do, in a way that he will accept?  That is our latest challenge.  Right now, I don't have an answer.  If you have a suggestion, I welcome it.

Join Sanch and Corinne for #FridayReflections.

Today's prompt - "Write a post about making mistakes"

Friday, June 2, 2017

Working the Puzzle #FridayReflections

Trying to advocate for my autistic brother in law, Bil, can be like putting together the pieces of a puzzle.

"Bil" is verbal (not everyone with autism talks) but is a man of few words.  You have to ask him direct questions, and you have to be careful about how you describe something.  Bil takes everything literally.  Many times, you don't know what he wants unless you know exactly how to ask.

And he resists anything new, or a change in his routine.

For example, Bil was recently deemed eligible for a program called "Community Hab".  In this program, he goes out one-on-one with a person, doing things he wants to do (like shopping, something he enjoys), but at the same time the community hab person is supposed to work on skills to make him more independent.  Bil had a big say in the skills he wanted to develop.  He also got to choose if he wanted a man or a woman (he wanted a woman) to work with him.

But, as I mentioned, Bil also doesn't do well with new situations.  This can be like working a puzzle blindfolded.  And what if the puzzle pieces move around unexpected?  Or if the puzzle changes in the middle of working it?  Life is like that.

Well, when he met with the person who agreed to work with him, Bil didn't want to work on anything!  One thing after another was suggested, with Bil turning it down.

The provider had to work on something, so Bil, finally, grudgingly decided to work on a couple of simple skills.

We decided to start him one day a week (he was eligible for up to three days a week) with the provider so that his routine wasn't that disrupted.

Within a couple of sessions, Bil had upped his Community Hab visits to twice a week, dropping a day from another program he was already attending (and which he loved).  He loved his one on one time time even more.


Sometimes, we get to place a piece in the puzzle, or at least understand its shape and size.

Perhaps it is no accident that the symbol of autism in our country is puzzle pieces.

Writing for #FridayReflections.  The prompt:  "Write about putting together the pieces of a puzzle."