A World Without Books #FridayReflections

“I have always imagined that paradise will be some kind of library.” — Jorge Luis Borges

I have loved books since I was a little girl.  I loved how they felt.  I loved how they smelled.  I loved going to the small branch public library that was located in the housing project where I grew up and taking books out.

Soon after I started school, that branch library closed, and in its place we started to get a bookmobile. It would park at my housing project each Thursday, except during the summer.  I dreamed of working in a bookmobile (a mobile library) when I grew up.

There was another branch library in walking distance, about a mile away.  They would close each June (and reopen in September) but they would allow users to take out an unlimited number of books right before they closed.  I filled my room with summer reading material.

So, when my husband and I became responsible for my autistic brother in law, one of the very first things we did for him was getting him a library card.  Strangely, he won't take the books out.  He wants to read in the library only.  He does have his favorites - science and horror.

In his own way, he loves books, too.  And the library.

In books, we both find our own types of paradise.

If heaven does not have libraries, it will not be heaven.

And, on this day when students and a teacher in a high school art classroom lost their lives in Santa Fe, Texas, all I can do is share a picture of a quilt displayed at our local library during the summer of 2014.  May they rest in peace.

Join Corinne at Everyday Gyaan,  Shalini/Kohl Eyed Me at #FridayReflections and share your love of books!

Dear Santa #FridayReflections

Dear Santa:

Oh, if only you were real.  I would have so much to ask you for.

I would ask that we humans treat each other fairly and with dignity.

I would ask that our health system be fixed.  Last week, I saw firsthand how dysfunctional it can be.

I would ask for housing suitable for my autistic brother in law.  I would ask for a system helping those with disabilities that was easy to manuver and really did do right by the people who depend on that system.

And, Santa, while you are at it, how about peace and plenty for us all?

I don't ask for too much, do I?

If only I had the time and energy to write about the events of the last week, Santa.  But for now, I am setting it aside, and getting a good night's sleep.

Join Sanch Vee and others for #FridayReflections, and see what we are asking Santa for.

Eccentric #FridayReflections

Eccentric - "of a person" "unconventional and slightly strange".

Today, instead of blogging about my disabled brother in law, Bil, I want to talk about me.

My father was a bit eccentric.  In modern times, he may well have been diagnosed with OCD.  One of my cousins on my father's side (now deceased) suffered terribly with OCD, and I am told one of my great aunts also exhibited OCD type behavior.

In my Dad's day, though, the behavior was "quirky".  To the teenaged me, growing up with my Dad - just us two, after the untimely death of my mother, it was more of an embarrassment.

As one example, my Dad liked to put dates on things.

For example would buy a box of crackers - he used to love to snack on saltines.  Every time he removed saltines from the box, he would write a record of it - the number and the date - on the side of the box.

He would buy socks. They were always the same style and color. He would date each sock.  And if I, doing the laundry, put two socks of different dates together, it would make him uncomfortable.  Don't get me wrong, he never yelled at me or verbally abused me - never.  But you could tell he wasn't happy.

I have my own little quirks.  When my child was young, he had several sets of Legos.  It wasn't enough for him to put the Legos away.  They had to go into the exact box they came in (so, after getting him to put the toys away, I would redo them, sorting out the Legos into their correct boxes.  If they were in the wrong box, it made me uncomfortable).  I did live my life just fine but there would be that nagging discomfort if I didn't put the Legos in their correct, original box.


Quirk?  Eccentric behavior?  Or something more?

What about you?

Join Sanch Vee and others for #FridayReflections.  Today's prompt:  "Eccentric".

Heart's Content #FridayReflections

I would love just to be able to laze around.

To read to my heart's content.

To blog to my heart's content.

To take photos of my world.

Yes, to my heart's content, instead of having to go to work when the world is glowing in golden hour light.

But duty calls.  Perhaps an issue that has to be dealt with regarding my developmentally disabled brother in law, Bil.

Yes, because he is not going to be able to stay in his day program very much longer.

I wonder if they've told him yet.

So the contentment of my heart must wait, still again.

Join Sanch Vee and other bloggers every Friday for #FridayReflections.  Today's prompt:  Heart's content.

The Monster Mash #FridayReflections

He was a graveyard smash.

He's always been attracted to horror.  He didn't know quite why, but there was something exciting about being scared when he was able to control the feeling.

There was so much he couldn't control.  There were the schoolyard bullies when he was young.  Then, when he was trying to find his way through a work world hard to understand, there was the boss that would yell and mock him.  There were the sounds that overwhelmed him.  There were the food textures that were unpleasant.  The tags in the clothing that irritated him.  The facial expressions that made no sense to him.  The unpredictable thunder in thunderstorms that petrified him.

He found so much in the world frightening.  When something became familiar, he clung to it with all his might.  Every change in his world was like an earthquake.

But, the horror stories.  And the horror books.  It was a way of him getting revenge on his tormentors, watching them scream and then be eaten by monsters.

The song "Monster Mash", in particular, made him imagine:  what if he was a famous singer?  No one would make fun of him.  He could do anything he wanted and he could be alone whenever he wanted. 

He would have his revenge at last.

Today's prompt on #FridayReflections:  Turn the radio on to your favorite station. Write a post using the song as your prompt.

Friday Reflections for October 13 - Do You Dare?

Many community groups and nonprofits are waiting with bated breath for the outcome of the Scarecrow Decorating contest in our community.  Who will win?

I am a member of two nonprofits - here are their entries.

ACHIEVE formerly was called ARC, which, at one time, was called the Association of Retarded Children.  The name change shows just how far we have come. No one now, in our country, would ever name an organization using the "R" word.

STIC is the "Southern Tier Independence Center", a non profit for and by those who strive for independence.  Their major fundraiser is a haunted house escape room- do you dare enter the Escape Room?

I've never done escape rooms - have you?

Friday the 13th - a perfect day for a post related to Halloween.

Joining Sanch Vee and other bloggers for #FridayReflections.  Today's prompt:  bated breath.

Nostalgic - #FridayReflections

It was last September. My husband and I were sitting in his cousin's living room.

On his large screen TV, the cousin was playing DVDs of home movies his late father had taken.

On the screen, two teens and a pre-teen mock-fought in a childhood back yard.

Or, should I say, two teens mock fight, because the third boy (who may have been 10 or 11 at the time, come to think of it) wasn't really interacting with his brothers.

The movie was taken at a family picnic.  Almost all the adults in the movie are now deceased.

I had never seen the home movie before, and it took me a bit to recognize the three boys.  But my husband recognized them immediately.

The teens are a lot older now - two of them in their 60's, and one in his late 50's. They were my husband and his next younger brother. The youngest one, the one who really wasn't interacting, was Bil, my husband's autistic brother.

I enjoyed this tiny glimpse into their life, before I even knew them.  It was a time when things just seemed simpler.  We had no idea of what would come in the years since.

Nostalgia is longing for a simpler time. 

My husband's teen years, in many ways, were simple.  His parents were still there to make decisions, and the future was far away.

Sometimes, you just want to go back....

Join Sanch Vee and other bloggers for #FridayReflections

Fearing for the Future #FridayReflections

Today, on #FridayReflections, we have 10 minutes of free writing.

No editing.

Walking on the high wire.

Let me tell you about something that happened the other day.  I was in the building where I work, and someone flagged me down.

"I saw you at the XYZ meeting.  Are you doing the Front Door?"

I was taken aback a minute.  But then I remembered what she was asking, after she told me "I was at that meeting, too.  I was sitting in the back, and you were sitting (where I was sitting)."  Funny how that jogged my memory.  And then, I certainly did remember.

What that meeting was about was finding out something about a self determination program.  It may well be that eventually, all people with disabilities in New York State will be funneled through that program.  Instead of having others set up programs, the disabled person is basically given a budget and told to hire their own people.  You need to keep track of hours.  In fact, if you find out that the provider of services is not doing their job properly, and you don't immediately speak out, you (the disabled person, or the advocate) may be committing Medicaid fraud.

Anyway.  She asked if I had signed "Bil", my developmentally disabled brother in law, up for that program.  I said no. 

This is what she told me.  She has two children.  One is not disabled.  The other one has serious medical issues.  And she's been having some trouble getting services.  But she hasn't signed up yet, either.

Sometimes I think the pendulum has swung too far.  At one time, disabled people were treated as second or third class citizens, or even as little children, even if their disability didn't affect their mental functioning.  The "People First" movement has been a blessing to many of those people, who can now manage their affairs, with supports.

But then there are the other people.  The medically fragile.  The intellectually challenged.  Under many of those programs, they still have to make the same decisions as those without cognitive disabilities.  Or, they can be like Bil, in his late 50's, and never having had to take charge of his life before.

You just can't be thrown, if I can use an expression, into the deep end of the pool, with out having had swimming lessons. Good luck with that.

I fear for Bil in the coming years.

What if, one day, he ends up with no family to advocate for him?  The two brothers in his life are both older than him.

One day, we may look back on these days. 

And with that, I finally want to say that I still am not sure what direction I want to take this blog in.  I may blog for the rest of October, although I am participating in several challenges with my main blog.

If I stop publishing, I will let you, my readers, know.

(end of 10 minute free write).

Join Sanch Vee and other bloggers at #FridayReflections.

The Blue Bicycle and the Boy #FridayReflections

Photo Credit:  Sanch Writes

The boy looked out from the motel window.  His family was at the beach, enjoying a rare vacation.

In the distance was a girl's blue bicycle. A beautiful aqua blue, it had a basket, perfect, perhaps to carry a picnic lunch.  It had been left there near the water.  Perhaps the girl who owned it was swimming with the rest of his family.  Or eating.  Or doing something else fun.

His family was on vacation, true, but while his sisters had gone with their mother to the beach, the boy had to stay behind with his Dad.  His Dad tried to distract him, but it didn't work.

"Why do I have to stay behind, Dad?" he thought.  "Why will I never even be able to ride a bicycle? Or swim?"

With an effort, he got out of bed to get a closer look.  The effort in itself winded him.  He paused to catch his breath, while his father looked at him, making sure he didn't need help. 

He knew better than to ask the question.

It was his heart.  He would be confined, for the rest of his life, to bed.  But every moment, with every beat of his damaged heart, he would ask.....why can't I be like everyone else?

* * * *

Writing for #FridayReflections.  Today's prompt - the above picture.

This is not total fiction, but rather, is based on the story of one of Bil's next door neighbors growing up.   The neighbor child, "A", born with a congenital heart defect, died when he was in his early teens.  He died before I met Bil's older brother, my husband.

Bil is in his late 50's and developmentally disabled.  He also has an almost "photographic" memory. 

Perhaps he sometimes thinks of "A", the boy who had to stay in bed for part of his life, and died so many years ago.  

And maybe he thinks "we all deserve the best lives we can have, despite what others call our disabilities".

The Impossible as Possible #FridayReflections

"We are all faced with a series of great opportunities brilliantly disguised as impossible situations" - Charles Swindoll.

So true.

I've been blogging about my brother in law, "Bil", in his late 50's, and autistic.  We are trying to get him "forever" housing as the day his mother can no longer care for him approaches.  Both we and my other brother in law/wife are older than him.  We won't be around forever, either.

We thought an apartment opportunity had opened.

But several days later, unexpectedly, we were told the apartment was no longer available.

Frustration.  Disappointment.  Sometimes, it really does seem impossible.  People with disabilities in the United States have it better than in many other countries, but still.

Bil can no longer find work (I should blog about why).  Bil has a very limited government pension.  His medical coverage is in danger, thanks to the feeble efforts of health care reform in this country.  Why should that even be?

I need to be a better advocate.  But I work full time, and I also have my elderly mother in law to think about.  It's nice to know there are great opportunities out there somewhere, if that quote is true.

So now, the future of this blog is also on my mind.  I have few readers.  I get that.  The subject matter is somewhat specialized.  I also keep myself anonymous for personal reasons (and because I talk sometimes about family), which prevents me from promoting the posts on social media.

I wanted to write a book one day.

Maybe it will all happen.  But right now, it just all seems impossible.  Should I quit?

The prompt I am writing for says "no".

There's always tomorrow, when the impossible may become possible, and another opportunity may open up.

Written for #FridayReflections, hosted by Sanch Vee.

Alone Together #FridayReflections

How can someone be alone, but together?

You can listen to this Fall Out Boy song, "Alone Together".  "We can stay young forever/we'll stay young young young...." the lyrics read.

The problem is, none of us can stay young forever.

One day, the ultimate loneliness will come, especially if a family comes apart.

For my mother in law, it may be today, when she finds out that her autistic son is being offered an apartment.  After years of waiting, "Bil"'s name has reached the top of the waiting list.  They have never lived apart.  My mother in law has made it clear, she doesn't want him to leave.

She never made any arrangements for Bil's future.  She never once sat down with us to share what she hoped we would do for Bil.  I admit to having a lot of anger about that, and anger that her inactions have led to this moment.

If Bil doesn't take the apartment, his housing future is uncertain.  None of us can guarantee what will happen the day his mother can no longer take care of him.

My husband and his younger brother are both older than "Bil".  He needs care for the day we are gone. Chances are, he will outlive all of us.  In fact, he is in better health than any of his older siblings. 

We want very much for Bil to seize this opportunity for independence.  At the age of nearly 60, Bil can start to truly grow up and take on adult responsibilities he has slowly been training for through his day programs.  Everyone feels he has a potential for achieving a lot.  He has been through a lot these last two years since moving up to be closer to us.  So have we.

So, although we are one family, we are split apart.  Mother in law on one side, the two brothers on the other side.

Bil in the middle.

Alone together.


What future will Bil choose?

We will know after today.

Join Sanch Vee and other bloggers at #FridayReflections.

A Sight for Sore Eyes

A sight for sore eyes can be a person or a place.

For Bil's journey to independence as someone with a developmental disability, it may be an apartment he may be looking at next week.  We don't know for sure if he will be able to view it but he will definitely interview for it.  He's one of several candidates for the opening.

It's in the village where he and his mother now live.  He would have a roommate but his own bedroom.

It would be the first time he's ever lived apart from his mother.

For us, his siblings and in laws, it's a sight for sore eyes because he has been on a housing list for so many years. It's taken so much work to arrive at this time, this place.   It will mean that Bil has a place to live, a shelter, a room to call his own, even if something happens to his mother.  And, the time is fast approaching where his mother (who wants him with her) will no longer be able to care for herself without outside help.

By the end of this week, we will know more.  Right now, they are giving us few details.

But we hope the wait is almost over.

Join Sanch Vee and other bloggers at #FridayReflections, where...well, we reflect.  The prompt for today "A sight for sore eyes".

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"

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.

Surprise!

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."

Preparing for Disaster #FridayReflections

Nature taught us a lesson Monday.

Trees - Friend or foe?

Our area was hit by a severe thunderstorm Monday.  Thankfully, there was no tornado, but winds brought down hundreds of trees, and left over 17,000 people without power.  The apartment complex where "Bil" and my mother in law live lost power.  And Bil, who is scared of thunderstorms, was frightened.

We were under a state of emergency for almost two days, as many roads were impassible right after the storm.

In fact, on the route you have to take to my mother in law's complex, a tree fell on top of a house.  It wasn't completely removed until yesterday.  

Another local relative was able to take my mother in law and "Bil" in temporarily, and it made me think.

I wish I could be great at organization, and for anticipating.  And maybe I could wish for the ability to see into the future, while I'm busy wishing.

Our loved ones were not prepared with bottled water or with adequate flashlights/lanterns. 

Why hadn't we thought of that?  For that matter, we weren't that prepared, either.  We can (and have) had Bil stay over, but we aren't equipped for an overnight stay of my mother in law. 

Imagine this tree falling on your car

So what if she, and her family here, had all lost power, or had a tree fall on their house, or have been trapped in their neighborhoods by impassible roads?

Today, I went online, and found these two sources - one for those like Bil, who are autistic - and one for pet owners. 

https://www.aspca.org/pet-care/general-pet-care/disaster-preparedness

http://www.monarchcenterforautism.org/safety/disaster-preparedness-tips-autism
Now, all we have to do, with everything else swirling around us, is implement some of these suggestions.  Just one more thing to add to our "to do" list.

Prepare for disaster.

Linking with #FridayReflections  at Everyday Gyaan.

Today's prompt:   "The thing you most wish you were great at."

Monday I will post the Reflection post for the Blogging from A to Z Challenge.  I invite you to come back Monday.

The Wisdom of "Gone With the Wind"

Today, for Friday Reflections, I am pondering this quote:

“Life’s under no obligation to give us what we expect.” - Margaret Mitchell

This is a quote from the American classic novel "Gone with the Wind". The full quote is taken from a conversation between the heroine of the book, Scarlett O'Hara, and a man she once thought she was in love with, Ashley.

Once they were young and idealistic.  Then, the United States Civil War came, bringing suffering, poverty, death, and more suffering.  Now, after the war, Scarlet was speaking.

“We’ve come a long way since those days, Ashley,” she said, trying to steady her voice, trying to fight the constriction in her throat. “We had fine notions then, didn’t we?” And then, with a rush, “Oh, Ashley, nothing has turned out as we expected!”

“It never does,” he said. “Life’s under no obligation to give us what we expect. We take what we get and are thankful it’s no worse than it is.”

Years ago, when my husband and I were in our late teens, we never dreamed how the future would turn out.  We were self-absorbed. My brother-in-law with autism, "Bil", was invisible to us in our youth, someone who spent all his time hidden in his room.  We never dreamed of how, one day, he would cause us hours and days of worry. 

There is much that is uncertain right now.  I haven't blogged about a lot of it, and I should.  But, briefly, he was on a list to get housing when his mother can no longer care for him, and the list no longer exists.  There is another list, years long, and, due to a "catch-22" (another literary expression!) he can not be put on that list.

Other options are limited.  And, with budget cuts, his options are shrinking.  In the meantime, he wants to live on his own, which will not be possible without extensive support.  That takes money.

And we are all getting older.  The clock, as they say, is ticking.

We know now what we didn't know then. We and (he) have quite a journey ahead of us.  I intend to write about some of that, and other of my thoughts about Bil, in April, for the Blogging from A to Z Challenge.  I hope to write a book one day, and hope that A to Z can help me focus on just what I want to write about.

My theme is - Journeying Through the Unknown.  

This April, I will blog daily, Monday through Saturday, and on the last day of April.  On April 1st, the topic of my post will begin with the letter A.  On Monday, April 3, it will begin with B, and so on.

After that, we'll just have to see where this journey is taking us, and Bil.  I'm not giving up - no, far from it, but we must take different directions, and some are unproven.

Join Sanch Vee and Corinne Rodriguez each Friday for #FridayReflections.

Why The Unknown Journey Ahead?

Why have I named this blog "The Unknown Journey Ahead"?


I have a brother in law, "Bil" (I do not use his real name) with a developmental disability called autism.  He's been cared for all his life (almost 60 years) by his mother.  But his mother is getting older, and she has many health problems.  One day, to be blunt, she won't be able to care for him anymore.

How serious a problem is autism in the United States?  I found this statistic on a quick Google search:   "On March 27, 2014, the Centers for Disease Control and Prevention (CDC) released new data on the prevalence of autism in the United States. This surveillance study identified 1 in 68 children (1 in 42 boys and 1 in 189 girls) as having autism spectrum disorder (ASD)."

One in 68.  It used to be one in 150, then one in 88, and....well, there are a lot of people out there who have family members with this condition.  Now, the first wave of what many call an epidemic have reached young adulthood, and parent struggle with the fact that most supports are removed at ages 18 or 21.


My husband, who is his older brother, is "Bil"'s guardian.  That means that my husband can make decisions concerning Bil's finances, and many (not all) of his medical decisions.  It was quite a process, and costly, for him to be named guardian. 

So, what happens when my mother in law no longer can care for Bil?  Bil lives with her, and this is what she wants.  But eventually, it will no longer be possible.

We are learning the answer to our question is not so simple.   There are programs, but they are not guaranteed.  He can't work (for reasons that I will explore in this blog another time).  He depends on non profits, government assistance, and family.

Plus, with the new Presidential administration in the United States, social programs are being slashed left and right.  Conservatives tell us we should be depending on non profits, but we have found out some those non profit depend greatly on government funding. 

Without great efforts, Bil is going to fall through cracks.  We must be inventive to try to assure he has a good future. We must, as the saying goes, "think outside the box".  There must be another way to get good housing for him, and to assure him a good life, we say to ourselves, and we are going to make it happen

We will not whine.  We may complain at times, but we will gather our strength, and do the best we can for "Bil".  Documenting that journey is the reason for this blog.


Documenting this journey will be the purpose of the Unknown Journey Ahead blog.  My hope is that others just now embarking on this journey (the birth rate of babies with autism continues to rise in our country, as quoted above) will learn from my experiences or help us with suggestions.  For that reason, I hope to participate in Blogging from A to Z Challenge in April.  In fact, I invite you to join me on March 20, when I reveal my A to Z theme.


There is a need for the knowledge I can provide.  In a way, my in laws and I have become trailblazers.  We would love you to join us on our Unknown Journey Ahead.
 
Join us at Friday Reflections.  Today's prompt:  The reason behind your blog and its name.

What are the reasons behind your blog?

To Be At Peace #FridayReflections

Picture Prompt, courtesy of Everyday Gyaan

Oh, to be able to sit calmly on a rock, fishing pole in hand, and wait for a bite.

To not have to worry about you, brother in law "Bil". 

Bil, I wonder if you worry about your future.  Perhaps, to you, time is unending, stretching out forever.  You depend so much on routines.  They provide a security, a scaffolding for your life, in a world where a change in routine means chaos.  That calm is deceptive.  We know how anxious you are.

Anxiety goes hand in hand with autism, a developmental disability that prevents you from understanding much about human behavior.

But we, your family, we must worry about you.  We are not peaceful fishermen.  We are apprehensive, because we can see things coming.

I wish I could transport myself into that picture.  I can imagine the waves lapping against the rocks and the sound they make.  I can imagine the man with his mind clear of thoughts, waiting.

Waiting, always waiting.  Will a fish bite?  Will no fish mean he goes hungry?

It might be nice to suddenly pop into that picture, and shed the worries I have here in my own world.

But here's the thing, Bil.  Your life is going to change drastically.  It may change tomorrow, or next week, or next year.  But changes are coming.

You were on a housing list, and now the housing list has been discontinued.

The State may be changing the way you get services.

Your mother will not live forever.  She's taken care of you nearly every day of your life.  You assume that someone will always be there for you, don't you?

That's the plan.  But, stuff happens.   We know how things are changing so rapidly, here in the United States.  Programs vanish.  Funding vanishes.  People are fearful.

I know those are not your worries, Bil.  They are the worries of your guardian, your brother, my husband.  Your guardian who, chances are, will predecease you, because you are several years younger. And you are in better health than he is.

Ah, to disappear into that picture, and never reappear.

Linking to #FridayReflections.

Can Determination Be the Key to Success?

Determination.

Many bloggers participate in a meme to choose a word for the year, that they will use as a springboard to achieving goals in the coming year.

As my regular blog readers know, I am the sister in law of a man in his late 50's, living in New York State, who has a developmental disability called autism. I call him "Bil". My husband is his brother's guardian.  Together, we are determined.  Although Bil lives with his elderly mother, he will be my husband's responsibility one day.

It's not an easy thing.  Therefore:


DETERMINATION will be my word for 2017.

DETERMINATION will give us the strength to find services for Bil that will permit him to gain some independence; to be able to do more of the kinds of things he wants to do.  This is not an easy thing to do-dealing with government bureaucracy never is.  In 2016 my husband had to deal with delays, ranging from the agency moving to paperwork being lost to...well, you get the idea.

But it looks like the intake for this service may actually happen later in January.

DETERMINATION will help both of us persevere.  I refuse to be be swallowed up by the need to help with the needs of my elderly mother in law and "Bil".  Is it selfish?  I do not think so.

My DETERMINATION to eventually write a book to help others with an adult member of their family who has autism had disappeared.  I had hoped to use this blog as a vehicle for that.

What I am finding is that I am still floundering; that this blog is still adrift without a clear course of action.  I am determined for that to stop, even if I have to stop posting for a while and regroup.

Finally, I am determined that Bil, once the time comes that his mother in law can no longer care for him, that he will have a place to go.  Shouldn't that be our home?  Well, that would be worth a post or two just on that topic.  We are both older than Bil.  Living with us can not be a permanent solution.

And, there is the matter of the incoming President of the United States. There is nothing I've seen that convinces me that Bil's quality of life will be improved by the change in administration.

I can only hope I am wrong.

Come link with me and others revealing their word for 2017.  Join us at Alphabet Salad and  #FridayReflections.

A Legacy of Love

I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel. – Maya Angelou.

Sometimes, people make the mistake of thinking that people with autism can not feel.  That is so far from the truth, although they find it difficult to express those emotions in a way that we, the community of those who don't have autism, can easily understand.

When you grow up different, many of your interactions with others are negative.  You may grow up believing that you are not worthy of love.  For those people, the special people who make them feel good have special places in their hearts.

Since moving to the area where we live in upstate New York last year, my brother in law, "Bil", has undergone many changes in his life.  It has been hard for him, but "Bil", who has autism, doesn't show much of it externally.

For the past year, "Bil" has been able to participate in a day program two or three times a week.  They transport him to and from, and he can play word games, exercise, color (adult coloring), and enjoy lunch.

Recently, the program had a holiday open house.  "Bil" came with my husband, me, and my mother in law, "Bil"'s mother.

We were greeted by one of the directors.  "Bil!", she exclaimed, "it is so good to see you.  Thank you for coming!"  She turned to us, smiling.

"Bil is one of our favorites here; we are so happy to see him.  We are happy he comes to our program.  We enjoy him being here."

I looked at "Bil" His face could have lit up the room. It may be a cliche, but now I know where the expression comes from.  I have known him for over 40 years, but I have never seen that kind of smile on his face.

Maybe that director says that to all the people who come.  Many are elderly, all have some kind of medical or developmental issue.  But it didn't matter.  "Bil" knows he is valued, that he has a place where they can't wait to see him come off the bus and walk in the door.

"Bil" will never forget how that director makes him feel.  And neither will we.  From his school days, and beyond, my mother in law received so much negative feedback, as do the parents of many with autism.

I wonder how many times she's been told "we like your son, we want him to be here."

None of us will forget that evening, and the power of a few words.  That director truly is leaving a legacy of love with those she works with. 

Linking with #FridayReflections.