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."

Friday, May 26, 2017

Star Light Star Bright

Where I grew up, in New York City, you could barely see the night sky.  There were so many streetlights that you could only see the moon, and the brightest of stars.

Yet, I would love to watch the night sky from the west window of my childhood apartment.  I would watch the progression of the moon, as it would set behind one building, and then another, and then reverse direction,  It was reliable. Each month, you knew exactly where the moon would set.

Similarly, the constellations had their own consistency.  There were the summer constellations.  There were the winter constellations.  They appeared and disappeared in rhythm.

Too bad all of life isn't like that.

In this blog, I blog about my relationships with my autistic brother in law, Bil, as he transitions from life with his nearly 90 year old mother to life (with help) on his own.

Sometimes, it seems that life is going good.  In the last two posts, I've blogged about a housing opportunity he applied for last week.  We were told it might take him two months to get on the waiting list.

Instead, it took a week.  As of earlier this week, Bil is on the list.

Now, we wait for his name to be chosen for a supported apartment, where he (with help) will be living with another roommate in a two bedroom apartment, as his mother gets closer to the time when she can no longer care for him.  Sooner or later, he had to leave his mother's home, as her other children did years and years ago.  I think he's, in a way, looking forward to it.

But budget cuts are in the works.

 His disability check, for which he is entitled due to his late father's work record, may be cut. We don't know how much this apartment will cost. He no longer works, as his only successful work experience was with a sheltered workshop, and they have now been discontinued.  He depends on a disability check, and a government medical program called Medicaid.  And, speaking of Medicaid, and budget cuts....

If only Bil's life could be as predictable as the stars in the sky.  Perhaps, to Bil, life has a rhythm known only to him.

Or perhaps we should all wish upon a star.
Star light, star bright,
First star I see tonight,
I wish I may, I wish I might,
Have this wish I wish tonight...

"Look at the night sky and use it to inspire your writing" is today's prompt on #FridayReflections. 

Come and join other bloggers in reflection this Friday.

Friday, May 19, 2017

The Sounds of Silence

Silence is not just the absence of sound.  Silence speaks in its own way.

Last week, I blogged about a housing opportunity for my autistic brother in law "Bil". When my husband told his mother (Bil is still living with her, as she approaches her 90's -her choice) her reaction was silence.

Silence can communicate a lot.

This Tuesday, Bil's service coordinator swung by my mother in law's apartment.  Bil met with her in his bedroom.  My mother in law doesn't hear that well and could hear little of the conversation.

In his bedroom, Bil signed an application to be considered for the housing opportunity.  It's been submitted.

So, yesterday, my husband had to tell his Mom the rest of the story, so she would have time to prepare.  Here's the situation:  If an apartment at this opportunity came free, Bil HAS to take it.  He has to take it right then and there. Otherwise, he may not have another chance.

Housing for people with developmental disabilities is in short supply.  There will be plenty of other individuals ready to jump at the chance.

My husband stopped by with groceries.  Mom knew he was going to talk about the housing.  He told her the full story.

His mother stayed silent for several long minutes.  Her silence said it all.

Finally, she spoke.  She spoke three words, in the language of her parents.

The words translate to "what will be, will be".

I know my mother in law wanted Bil living with her for the rest of her life.  But, he has to leave whenever this opening comes.  It could be two months (it will take that long for the application to be processed).  It could be six months.  But one day, the call will come.

He wouldn't move far- just a couple of miles from her, and from us.  It sounds like a good setup, too.  He would have one roommate.  Each would have his own bedroom. They would share a bathroom and a kitchen.  There is someone on premises 24 hours a day to help with any issues.  There is also transportation available.

Right now, he has his own bedroom and shares a bathroom and a kitchen with his Mom.

Bil came to a meeting yesterday that was supposed to take place last week.  At the meeting, he asked questions about where he would live.  I think, in his mind, he wanted to confirm what he had already been told.  All the answers were the same as information he had been given before he signed the application. 

According to my husband (I was at work), Bil didn't seem anxious.  I think a part of him is ready to fly the nest he has lived in for almost 60 years.

I just hope my mother in law is ready.  Silence, as the saying goes, can speak volumes.

"The sounds of silence" - today's prompt for #FridayReflections. Hosted by Corinne and Sanch, we choose from a small list of prompts, or from a weekly photo.  Come link up, or read what we each have to say and vote for your favorite post.

Friday, May 12, 2017

The Great Adventure #FridayReflections

There we were.  It was time for my autistic brother in law's six month review at the day program he attends three times a week.  My husband and I were there.  His other brother and his wife were there.  The program director was there. His service coordinator was there.  There was just one problem:

"Bil" wasn't there.

Suffice to say there was a cluster of communication failures. 

So, again, there we were.

Without Bil, the person whose progress we were reviewing, the meeting couldn't happen.  But while we were there, we ended up having a meeting so educational that my head is still spinning, several days later.

Bil has a housing opportunity.  It's a good one.  It's not too many miles from where my husband and I live. 

It may take several months to happen.  But when it does, it will be quick.  And he must take the opportunity right away, because he won't be given another chance in the future.  There are many disabled who need this kind of apartment, and a big shortage of suitable housing. 

The people who work with Bil feel Bil is ready to separate from his mother.  His mother is elderly, prone to falls (but thankfully not cognitively impaired) and would need additional assistance without him present for some of the day (he does some routine tasks she can no longer do, and if she drops something, he has to pick it up as she no longer dares to bend or crouch).

Whether his mother is ready to separate, we have some doubts about. He's lived with her all his life.  Where they used to live until two years ago (miles from us), she turned down several housing opportunities for him.  She wanted him by her side.  She's never been able to let him go.  But he's in his late 50's. It's past time for him to spread his wings to the best of his abilities.

When my husband told her Bil's service coordinator was going to be applying for a housing opening, she said - nothing.


We have to have a family meeting to talk to her,  and also to get her wishes for once Bil moves out.  It's going to be an adventure and another journey into the unknown.  We are fighting for Bil's future because they are going to separate now, or separate later (when she dies, or is no longer able to care for him). 

We are reaching for the right words, the words that will make the best of a stressful situation.

I feel like we are at a turning point.  We are all hanging off a cliff without a net underneath us 

But, you know what? 

This is just one obstacle in what is going to be a lifetime of challenges.  We've met some of those challenges already.  Others are to come.  We must remember that attitude is everything.  

We can't give up before we begin.  It's time to consider this as a great adventure.

Today's prompt: “Adventure isn’t hanging on a rope off the side of a mountain. Adventure is an attitude that we must apply to the day to day obstacles in life.” – John Amatt.

Join Corinne and Sanch at #FridayReflections.