Friday, December 8, 2017

The Perils of Improving

We have a problem.  Well, we have more than one problem, but...

My autistic brother in law, Bil, will be dropped from his day program.  He no longer fits the criteria - he has improved too much.  He has to go.

This week, my husband (Bil's guardian) and Bil toured a possible new day program.

It's active.  They get the participants out to the YMCA for exercise.  They go bowling.  They play basketball.  They attend exercise classes.  They are out and about.

They asked Bil what he likes to do.  His response was "go shopping".

Hmmm....I have a feeling this is not a good fit.

So we don't know where to go. 

My brother in law, who is close to 60, has never been in any athletic activity.  For years, he worked in a sheltered workshop.  He came home and watched TV.  He went shopping with his mother.  But when his mother bowled with her friends or mall walked (those days are over), he didn't come with her.  She needed her time with friends.  I totally get that.

The day program he is with now broadened his horizons, but it was designed for those with medical issues, and now he will be in with active adults who love to be active.

I feel for Bil. 

He told the placement "he would think about it".  He doesn't have too long to think about it, though.

I hope he will try it.  We can't force it, although we can encourage it.  It is his life, his decision.

If he says no, then what?  Does he go back to sitting at home while his Mom (now almost 90 with multiple health issues) watches the Hallmark Channel, news channels, and cooking shows?

The future awaits.  And people with autism do not like change.

But change is coming.

Friday, December 1, 2017

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".

Friday, November 24, 2017

If We Were Having Coffee #FridayReflections

Dear friend, here we are, sitting at the able over our coffees.

I have so much to tell you, but I'm not sure how to begin.

We had a wonderful Thanksgiving with my nearly 90 year old mother in law, and my autistic brother in law, Bil. Bil, I think, had a good time, too.

But change is coming in his life.  His day program can no longer keep him.

Next week, Bil will tour a new program.  And, the week after, he is going to consult with a gastroenterologist.  He should have had a colonoscopy years ago, and his doctor says he needs to have one now.

That's going to be fun and exciting.  The prep for a colonoscopy isn't fun for a person who is not developmentally disabled.  Not a topic for a coffee shop, so I'll have that conversation another time.

His doctor feels Bil should exercise more, as his weight keeps increasing.  He loves to eat, and we'll have to see where that goes, too.

And, dear friend, we almost didn't have that Thanksgiving at all, because my mother in law fell yesterday, leaving her apartment.  Fortunately, it was more of a sliding down her rollator than a true fall, but she couldn't get up and had to call my husband for help. 

So it leaves us again, with worries and unanswered questions, as winter starts to close in on us.

There's something about having coffee that relaxes you and lets conversation flow.  I've spoken enough - what's up with you?

Join Sanch Vee and others for #FridayReflections. 

The prompt:  "If you were having coffee".

Friday, November 17, 2017

Authenticity

Authenticity is the daily practice of letting go of who we think we are supposed to be, and embracing who we are. - Casandra Brené Brown

In 2010 Ms. Brown gave a talk at TEDx Houston.  Her profile says:

"Brené Brown studies human connection -- our ability to empathize, belong, love. In a poignant, funny talk, she shares a deep insight from her research, one that sent her on a personal quest to know herself as well as to understand humanity. A talk to share."

If there is one person in the world who is authentic, it is my brother in law Bil, who is developmentally disabled.  I'm not sure he has ever even thought about who he is supposed to be.  He just is who he is.  In some ways, knowing him is a way of understanding humanity.  He doesn't try to be fake.  He doesn't hide who he is.

Some may call it "being naive".  But, with Bil, what you see is what you get.

This isn't to say that Bil never engages in manipulative behavior.  He isn't a saint.  And, really, we do people with disabilities a disservice when we portray them as long-suffering people that are just a step away from sainthood. And, I would not be authentic myself if I didn't admit that I don't always like him.  He isn't an easy person to know.

But Bil doesn't pretend to be something he is not.  

So, it hurt Bil when he got some bad news this week.  He is no longer eligible for his day program.  And why is that?

Because he has made strides in it, enough that he is no longer impaired enough for them to justify him attending it. But it hurt the program director when she had to tell us.  If things change, she told us, we would take him back in a heartbeat.  We love Bil." And Bil liked the program.

So now, the hunt is on for a different program.

Bil will be Bil, and maybe he will end up thriving in his new program. So again, Bil, who dreads change, will have to face another change in his life.  The Unfamiliar.  But a change that, we hope, ends up being for the better.

Join Sanch Vee and other bloggers at #FridayReflections.  The prompt is at the top of my post.

Friday, November 10, 2017

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.

Friday, November 3, 2017

The Neverending Journey

I spent some time over the weekend cleaning out the binder we store our information for Bil in.  It had been a long time since we had cleaned it out, and there was a lot of out of date paper we got rid of.

That binder holds a lot - nearly 15 years of advocacy, dating back to 2003.  Our work on behalf of my developmentally disabled brother in law, Bil, actually goes back longer than that.

15 years.

Phone calls.  Emails.  Brochures and handouts from meetings.

Evaulations.

More evaluations.

Meetings.

More meetings.

Some of the documents from the journey my husband underwent to gain guardianship of Bil.

Much of it obsolete now.  Much of it thrown out.  Others, still valid after all these years.  It makes me weary, just to think of it.

All of that brought us to where we are now.  Still so much up in the air.

Perhaps it will be like that until we are all a distant memory, a blip in the history of the world.

The more things change, the more they remain the same.

Friday, October 27, 2017

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, October 20, 2017

Them, Too? What About Those with Disabilities?

My autistic brother in law, Bil, has never had a girlfriend.

He is definitely interested in women, especially blondes.  But I don't even know if he has ever tried to ask a woman out on a date.

On the other hand, would I ever have wondered if Bil was ever a victim of unwanted advances, on the other hand?

The recent #MeToo movement has made me wonder how many people outside of the disability community are aware of how often this vulnerable part of our population are subjected to this type of abuse. This is not to minimize what we of the non-disabled community have gone through (I am a woman in my 60's, so yes, I can come out and say MeToo, but that isn't the purpose of this blog post), but rather to bring up the following.

Here are some troubling statistics, courtesy of the national ARC: I quote, and hope the ARC is OK with that.  This word needs to go out.

"How often do adults and children experience sexual violence?
Studies consistently demonstrate that people with intellectual disability are sexually victimized more often than others who do not have a disability (Furey, 1994). Other studies suggest that 49 percent of people with intellectual disability will experience 10 or more sexually abusive incidents (Sobsey & Doe, 1991).
Any type of disability appears to contribute to higher risk of victimization but intellectual disability, communication disorders, and behavioral disorders appear to contribute to very high levels of risk, and having multiple disabilities (e.g., intellectual disability and behavior disorders) result in even higher risk levels (Sullivan & Knutson, 2000)....

Women are sexually assaulted more often when compared to men whether they have a disability or not, so men with disabilities are often overlooked. (emphasis is mine) Researchers have found that men with disabilities are twice as likely to become a victim of sexual violence compared to men without disabilities (The Roeher Institute, 1995). "

And this....
" How can sexual violence of people with intellectual disability be prevented?
The first step is recognizing the magnitude of the problem and facing the reality that people with intellectual disability are more likely to be assaulted sexually than those without disabilities. Also, societal attitudes must change to view victims with disabilities as having equal value as victims without disabilities, and giving them equal advocacy. Every sexual assault, regardless of who the victim is, must be taken seriously."

Yes, Bil is at risk, as is everyone else with an intellectual or communication disability, and Bil has both.

I wonder....does Bil have a #MeToo story to tell?

Friday, October 13, 2017

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.

Friday, October 6, 2017

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

Friday, September 29, 2017

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.

Friday, September 22, 2017

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".

Friday, September 15, 2017

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.

Friday, September 8, 2017

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.

Friday, September 1, 2017

Ephemeral Hopes and Dreams #FridayReflections

Here we were, our hopes popping like a fragile bubble.  It only took one sentence. 

"I don't want to leave my mother".

We were hoping, so hoping, that my developmentally disabled brother in law, "Bil", could find a housing placement before the time (not too distant, we feel) that his mother will no longer be able to care for him.

When you are young, time stretches before you like an endless highway.  Now, in my 60's, it seems like a rapidly revolving roll of toilet paper reaching its end.  Bil is only about six years behind me.


Earlier this week, "Bil" and some of us toured the three types of housing that would be available in our community with someone who has Bil's disabilities.  He has expressed interest in living away from his mother.  In a day program he has been in for two years, he has made strides towards being his own person. 

I feel I should explain a little more about these housing opportunities.

"Supportive" housing actually gives the least support.  Bil would need to be almost fully independent, able to cook and shop for himself.  He is not there yet - he is afraid to use a stove, and has done very little food preparation in the past.  And we have found that he will not do basic chores needed for independent living without prompting.  In this placement, there would be no prompting, and no staff on premises.

"Supervisory" is the next level, and the one that Bil decided he would be the most interested in.  In supervisory housing, there are a couple of full time staff on premises, ready to help with any kind of emergency.  Other than that, the residents are expected to be somewhat independent. Bil would have his own room, share a bathroom, and share a common living room space, all within a large house housing six men and nine women. 

The home we saw was spacious and clean.

Finally, "IRA" or what used to be called group homes, is the most restrictive.  We agreed this was not suitable; that Bil's level of functioning called for a more independent type of housing (but not as independent as the supportive apartment).  In fact, the one we saw seemed to be more of an assisted living facility geared to people with physical frailness.  That is not Bil.

As we toured, Bil said he doesn't want to leave his mother, who is nearly 90.  He is worried about her and her physical decline.  But, that shouldn't be his worry, and we've told him before that her well being is on our "worry plates" not his.
So this is an addition to our "worry plate".

So we asked what would happen if Bil tried the supportive housing.  When I asked "what happens if he doesn't succeed?" it sounded like they were tip toeing around the truth.  Finally, one gentleman said "he might be returned to his mother's apartment".  In truth, if he turns down the placement, he goes to the bottom of the list.  And it is a very long list.


And his mother's reaction to the possibility of Bil living apart from her (although he would be about five minutes away)?

Needless to say, she was not happy.   She does not support him in this.

Her years of independence have also been ephemeral.  Now, she falls constantly (one fall and one slip since June).   She won't let go of Bil.  But if something happens to her - then what happens to Bil?

She has to let go.  She has to make Bil comfortable in his decision so he can keep growing as a person. 

But life is a series of ups and downs.  Perhaps another up is just around the corner.  Perhaps this setback is ephemeral, lasting for a very short time.

Join Sanch and other bloggers in #FridayReflections.

Friday, August 25, 2017

Taking Off In Flight

Some of us gain independence in our teens, others of us in our 20's.

For my autistic brother in law Bil, it may not be until his late 50's.  For others with developmental disabilities, it may be never.

Bil may never have the ability to fly totally on his own wings, but we will applaud his attempts at independence, no matter how low or how high he may be able to fly.

This coming Monday, he will take another step.

When Bil moved up to this area with his elderly mother some two years ago, he was not at all independent.  He had depended on his mother his whole life.  But, a day program he started to attend changed all that.

He used to watch the same political shows as his mother.  But then, he changed his orientation.  He went from one political party to the one his mother did not support.

If you asked him to do something, he sometimes asked "why?" Not out of disrespect, but he was starting to think things through.

And, he lived on his own (with support) for several weeks while his mother was in rehab after a hospitalization.  He chose that.  The only night he wanted to stay with us was when there were thunderstorms, something he is highly frightened of.

Now, Bil has the chance to live apart from his mother for the first time.  Monday, he will tour the apartment he and others are being considered for.

We are excited for Bil, even as people like Bil, people with autism, face budget cuts and worse.

We will not stop fighting for him, even as those who hate continue their demonstrations. 

Friday, August 18, 2017

The Threat

Up to now, I've devoted this blog to my autistic brother in law, "Bil".  But, starting today, I may take this blog in a different direction.

Because "it" doesn't happen overnight.

 By "it", I mean tyranny.  Nazi Germany did not go from zero to mass murder of millions overnight.  And, in some scary ways, people enabled the tyrants by not speaking out before it was too late. One day, they no longer could.

I grew up knowing people whose families had been wiped out.  Now, that generation is almost completely gone.  In the next few years, they will be gone.

It is up to us to speak out. What happened Saturday in Charlottesville, Virginia can happen anywhere in this country.

I have to wonder, if that car hadn't plowed into that crowd in Charlottesville, how many fewer people may not have woken up and take notice.  As it is, a 32 year old woman is dead and 19 others are injured.

History has much to teach us, dear readers, if we only pay attention.

And why should I do this on a blog devoted to someone with autism?

You may have heard of a condition called Asperger Syndrome, a " developmental disorder characterized by significant difficulties in social interaction and nonverbal communication, along with restricted and repetitive patterns of behavior and interests."  Some in Bil's life says he has this syndrome.

Have you ever wondered who it was named after?  Because it was named after someone.

Hans Asperger, who died in 1980, was an Austrian pediatrician.  Part of his life was lived during the Nazi era.  You may be interested in his history.

There is some evidence (not conclusive, I must add) that Asperger may have been sympathetic to the Nazis.  On the other hand, others claim he went along with a philosophy he found abhorrent to save the children he was treating.  Like so much in historical study, the story is complicated.

One thing that is not disputed that Nazis held periodic campaigns to eradicate people with disabilities. Bil would have been on his hit list.  

I wonder if those sympathetic to the alt right who have autistic family members  know about this part of the Nazi philosophy, and, if it would matter to them in the midst of their hatred.

If you have anyone in your family who is developmentally disabled, this fight against those who did these terrorist acts in Charlottesville is your fight.  You can not stand by and ignore what is happening in our country.

So, do I continue to write mild posts about my brother in law and his future?  Or do I take this blog in a new direction?

Friday, August 11, 2017

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".

Friday, August 4, 2017

Buckle Up for Safety

My autistic brother in law, when he first came up to this area to live, would not buckle up if he was in the back seat.

It seemed that my mother in law, because the state law did not require her to be buckled up if she was a back seat passenger, wouldn't buckle up.  My brother in law decided, rather quickly, that he wouldn't buckle up, either.

On the other hand, I am strict about any back seat passengers being belted up.  My son, if he hadn't been buckled in, would almost have certainly have died in a car crash when he was young.  I remember how obsessed the emergency room crew seemed to be about if he had been buckled in.  The bruises and outline of the shoulder belt proved he had been buckled in.

In the same crash, my husband and I were also buckled in, and we only suffered bruises.

It was a little bit of a struggle to get my brother in law to accept the back seat belting in, but we insist on it (since my mother in law always rides in the front now, her belting in is not an issue as she obeys the law.)  It's worth the struggle, now that videos show what happens if a back seat passenger isn't belted in.

Oh, about the seat belt laws - each state in the United States has its own laws.

Remember the old jingle?  Buckle up for safety.  Buckle up. Show the world you care. Even if you have autism.

Friday, July 28, 2017

The Medical Kerfuffle

Kerfuffle: "a commotion or fuss".  Apparently this is British (Scots/Gaelic, now British) but the word has become increasingly popular in the United States.

There's another saying in the United States:  No good deed goes unpunished. 

My husband is in this situation now.

It all started innocently, with Bil's Medicaid Service Coordinator noting she felt Bil was paying too much for his health insurance.  He had a mystery insurance policy he's paying on for years, and no one knew what it was.

We are still in the middle of the kerfuffle, so I don't want to go into details (or this post will turn into a rant.)  Suffice it to say, he might be losing some coverage he has.  And we don't know for sure if it can be replaced.  But on the other hand, it may have a not-totally-bad ending.

We just don't know.  Yet.

And we can't get good information.

The system is so complex that, literally, no one knows the answers to the questions that have been raised.

Stay tuned.

Friday, July 21, 2017

Too Many Regrets #FridayReflections

In some ways, my mother in law's life could be called "the one that got away".  But, in her case, it was the sum of some decisions that, with hindsight, weren't all that good, along with some "no one can look into the future, can they?"

For example, choosing not to get a survivors benefit on her husband's pension so that he could draw more money when he was alive.  He died two weeks after retiring.  Who could have predicted?  Well, he wasn't in the best of health, and retired for that reason to begin with.  His downhill slide was apparent.  Why did he leave his wife with no survivor's benefit?

Redecorating her house instead of saving her money for the future.  When her future came, she found she had spent money on the wrong things, things buyers had no interest in. And, sad but true, no one wanted her belongings. (That is true for many seniors in our society here in the United States, by the way.)

While she had health and money, deciding she was going to stay in her house, no matter what.  She waited too long and had to move away from her friends and many of her family members.  Fortunately, we live in an area much cheaper to live in.

But, worst of all, she didn't take heed of the future of her autistic son.  She made no plans for his future.  She refused to have him move into supported housing (placements were offered several times).    She didn't even discuss her wishes for him with her other children.   She just "assumed."

Now, her son is at the mercy of budget cuts and the good will of his siblings.

Did she not realize that her other children were not mind readers?

No, it wasn't just one thing that got away.  It was many things.  Her health (which she did try to preserve).  Her mobility (and she was far from a lazy person).  And now, in the end, her quality of life has suffered.  Her children, including her autistic son, worry about her.


I'm sure this future was the last thing she wanted.  Her future was the person who haunted her, the one that got away.

Join Sanch and other bloggers in #FridayReflections.  The prompt for this week is “Then I wondered if everybody has that person that haunts them, the one that got away.” ― Marlon James, A Brief History of Seven Killings. You can use the entire quote in your post or else as a theme for your post.


Friday, July 14, 2017

The Worry Plate

Have you ever heard of the Worry Plate?

We've been caregivers for my elderly mother in law.  Family members do shopping, taking to appointments, help her with her banking, and provide a lot of other help.

But now, my mother in law has fallen once too often.  It appears her days of independent living are nearly at an end.  On top of this, "Bil", my brother in law with autism (who has lived with her all his life), is apparently near the top of a housing list.  When his name reaches the top, he must take the placement, or lose his opportunity all together.

Bil must leave, but it is obvious that he is worrying about his mother's ability to be alone.  He's been skipping going to his day program recently, and it has been noticed.

At a meeting earlier in the week regarding Bil's progress in a program he attends twice a week and in another program he participates in, we were introduced to the concept of the "worry plate". Bil expressed concerns about cuts proposed by the government that will affect him.  "You can worry about your Mom", the director said.  "It is OK for that to be on your worry plate.  And you can worry about what living in a supported apartment will be like.  It is OK for that to be on your worry plate.  But you should not worry about the budget cuts.  There are people whose jobs are to worry about that. Get that off your worry plate."

I love the concept of the worry plate.

My mother in law is very much on our worry plates, which, right now, seem to be overflowing.

We are trying to educate ourselves regarding how to get the care we need and how to pay for it.  I know that in some countries, an elderly parent just moves in with children but in the United States, it is more complex than that.  We do not have extended families to help us out, either.

We are about to embark on a new stage of caregiving.  It has its own vocabulary, its own experts, its own practices.  We are embarking on a steep learning curve.

We've taken the first few steps.  We feel like we are drowning in air with all the information, and all the research and document gathering we will have to do.

We are like fish out of water.

"Fish out of water" - today's prompt for #FridayReflections.

Today I am joining Sanch Vee and other bloggers in #FridayReflections.  I hope you will, too.

One final note:  For several months I have been keeping a "once a week, Fridays" blogging schedule.  Due to time being taken because of this new turn in our lives, I may suspend writing posts for this blog, or post on an irregular schedule.

Wish us luck.

Friday, July 7, 2017

Mom Have You Eaten? #FridayReflectons

For Bil, my autistic brother in law, his mother, and us, it has not been the best 10 days.

My mother in law, Bil's mother, fell and hit her side and then her head.  Bil pulled the emergency cord in her apartment for her, but she wouldn't let the paramedics take her to the ER.  She didn't want Bil left alone because thunderstorms were threatening.

We ended up taking her, and Bil was so bored because he could not control the TV in the waiting room.  And, finally, he decided he wanted to be home after all.

A CT scan of mil's head was negative.  A stroke of luck.  It could have been so much worse.

When they asked my mother in law if she had hurt anything else, she said only "I am old. I hurt everywhere."  It turns out, after a second trip to the ER after she couldn't stand the pain any more, that she had broken her tailbone.  There was nothing to be done, only pain management.

But our mother in law has two other sons besides Bil, and both are very much in her life.  Another stroke of luck.

The next day was the Fourth of July, and Bil wanted to be at our house, where we were entertaining several other family members.  The plan was to have a BBQ and bring the leftovers (we made sure there were plenty of leftovers) to my mother in law's house.

When we took Bil home, Bil's first words to his mother were "have you eaten?"

Many people believe autistic people don't care about others in their lives. They are wrong.  We are lucky in another aspect - Bil is verbal, and is a great help to his mother.  How lucky.

But this is only a small part of the story.  There's a lot more, but I will blog about it more next week.

Wish us luck.

Linking with Sanch Vee and #FridayReflections.  Today's prompt:  Lucky.

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.  

Uncertainty.

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.

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."

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.

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.

Sunday, May 7, 2017

A to Z Reflection on the Unknown Journey Ahead

On April 1, I decided to do something daring - open my blog up to the general public (and not just people who already knew me in person or as a blogger) by participating in something called the Blogging from A to Z Challenge. 

My intention was to blog a book, but it didn't exactly work out that way.

Did I finish the A to Z Challenge?  Yes, and I hope you (if you participated) did, too.

A tradition of A to Z is to look back on the previous month, and that is what I am doing today.

If the truth be told....

Although I didn't make it public, I was blogging with two different blogs.  One blog is established, and it was my third A to Z on that blog.  This blog I've kept hidden for a lot of its life, and this was its first A to Z.

In fact, blogging in A to Z with two blogs (for reasons of privacy, I've chosen not to reveal my "true identity" on this blog) was rather overwhelming.  I would never do A to Z with two blogs at once.

But it was a learning experience, even if I didn't accomplish my goal.

I want to thank the bloggers who visited my blog.  These included (this isn't a complete list and I don't want to leave anyone out):

Write to Inspire - Shirley Corder   Shirley blogged an entire month on How To Build a Better Blog.  I wish I had read it before the challenge, because it had so much good information.

Hilary Melton-Butcher at Positive Letters - Inspirational Stories.  She won't be participating in A to Z next year, which makes me a little sad.

DeeDee at Mrs. DAsh says. 

 I also wanted to comment on questions the organizers of A to Z asked.  In past years, there has been a list with links to every blog that signed up for the challenge.  You didn't need to participate in any social media.  This year, the challenge went list free, which I fully understand.  The organizers do a tremendous amount of work trying to monitor the challenge, and should be congratulated on the wonderful job they do.  Yet....I'm not on social media as far as this blog is concerned, and I think it held me back.  There was a non social media way of participating, which I used, but I just got that feeling that I was missing out on a lot of the action. 

So, I do not think I will be joining in again next year, unless I take Shirley Corder's advice, spend the entire year really thinking about the book I want to blog, perhaps rewriting some posts, and maybe giving it another try.

Until then - I blog every Friday, and I would be thrilled if you join me every Friday to see what is happening in my Unknown Journey Ahead.

Friday, May 5, 2017

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. 
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.

Sunday, April 30, 2017

Zeroing (In) #AtoZChallenge

I made it!

I have reached the rest of the alphabet.  I zeroed in on my goal and achieved it.

I have 26 more posts than I had on March 31.

Now what?

I go forward, perhaps, and rethink blogging a book.  To do so, I am going to reread a series of A to Z posts I found in one of the many new blogs I read this month.  Shirley ran a series called Build a Better Blog, and it is chock-full of advice (such as this nugget).

Ironically, because I was too busy blogging (with A to Zing with two blogs - yikes!) I never had time to sit down with each and every one of the posts and really concentrate.

But for now I will zero in on the parts of her advice that speak to me.

And from there...I'll continue on my Unknown Journey Ahead.  Now that A to Z is over, I plan to resume my normal once a week (Friday) posting schedules.

But first, I would like to thank my new followers, and those who had already discovered my blog, for following and reading me.

A virtual bouquet of violets for you.

Zee End.

Saturday, April 29, 2017

Yearning (for good housing) #AtoZChallenge

"Bil", my autistic brother in law, had his annual review recently, and the topic of housing for Bil, once my mother in law can no longer care for him, came up.

Let me backtrack a little.  Bil lives with his mother.  He always has.  First, it was in his childhood home, where he lived for all his conscious life.  In 2015, he and his mother were moved up here to be closer to two of her other children, and they moved into an apartment in a senior complex.

Once his Mom can no longer stay there due to physical or health issues, Bil has to move out, and find another housing option. He would be allowed to stay, but he can't afford the rent.  And therein lies the problem.

We already experienced a time when Bil had to stay in the apartment while his mother was hospitalized.  He had a lot of support from my husband, his oldest brother, and me.

I've mentioned in other posts about the fact that Bil could never grasp the fact that garbage needed to be taken out.  He had to be prompted.  It was surprising that the smell of garbage didn't seem to prompt him into action.

We were a little bit more successful with food.  Bil has always been scared to use the stove.  But, we found he could use the microwave with direction.  Lunch was not a problem two days a week, when he attended a day program. On other days, he would have a sandwich from a fast food place or the local supermarket (one of us had to take him).  For supper, we ended up buying frozen dinners for him (alternating them with ready made dinners from the local supermarket). Bil learned to read the directions and put in the cooking times.

But being able to make microwave meals or being able to take out the garbage does not lead to independence.

Also, there is no public transportation where Bil lives.  He is too young for the "senior bus".  He is not capable of learning how to drive.  And, even if he could get around on his own, it would not solve the problem of housing for Bil.


We will have to learn to think outside the box, because his options are truly limited.

"Y" Day on Blogging from A To Z.

Friday, April 28, 2017

Xenophobia #AtoZChallenge

Websters dictionary defines Xenophobia as:

"Fear and hatred of strangers or foreigners or of anything that is strange or foreign."

To many, autistic people like my brother in law Bil are strange.  They are afraid of "people like that".  They think that "people like that" aren't human, or worse yet, need to be "cured".  Autism isn't a disease. No one needs to be "cured" of autism any more than I should be cured of my love of reading.

Perhaps the fact that autism has become more common will help with the fear of strangers.  If the person with autism is your child or your grandchild, or your child/grandchild's friend, or the artist whose works you are admiring at an open house at an art studio, you will see that person as a human being, and not some kind of statistic.

Although not connected to autism, xenophobia can pop up anywhere in our world with frightening violence - for example, recently in South Africa.


I sometimes wish we could be more like trees.  Walking the other day, my husband pointed this tree out to me.  It must have been grafted, because part of the tree was blooming pink, and part of it was blooming white.

Both in harmony.

One could wish....


Thursday, April 27, 2017

Watching and Waiting #AtoZChallenge

We watch and wait to see the latest developments in the life of my autistic brother in law, Bil.

Perhaps we should be more like April the Giraffe, a giraffe living at Animal Adventure Park in upstate New York. 

The private zoo where April lived decided to train a webcam on her this past February. She had been a prime attraction at the park, and was expecting a baby calf.  The park expected the webcam would be up just a few days.  Her fans could watch her give birth, and then they would take the webcam down.

Nothing went as planned.  Nothing.

April didn't give birth until April 15.

A few hundred fans, in the meantime, blossomed into hundreds of thousands.  In fact, many autistic people, especially children, found fascination in April. (Bil was not one of them - up to now, he's showed little interest in being online). They, and neurotypicals, watched April obsessively.

The staff of AAP was not ready for their fame.  Going viral can be a blessing and a curse.  Now, they had to scramble to accommodate all the news agencies, the new fans, the old fans, those who claimed the pregnancy was a hoax, those complaining about the camera angles, those demanding the lens be cleaned, the water be moved, or whatever else.

But April, the unknowing center of attention, just continued to do what she always did (in a way, just like Bil).

Here are the lessons of April the giraffe I learned while watching and waiting for April to give birth (and after the birth):

1.  Expect the unexpected.
2.  Do the best you can with what you have.
3.  Don't hesitate to ask for help if things become overwhelming.
4.  Don't let the naysayers get you down.
5.  Don't be afraid to reach for the stars.

"W" Day on the Blogging from A to Z Challenge.

Thank you for joining me on my Unknown Journey.

Wednesday, April 26, 2017

Voting #atozchallenge

To the best of my knowledge, my autistic brother in law, "Bil", never voted until a handful of years ago.  He was registered to vote where he lived then by his Medicaid Service Coordinator.

As far as I know, Bil had never voted before.  In years past, people with disabilities tended to be forgotten in many ways, including in having a right to exercise one of the basic rights of United States citizenship.  Outrageous, isn't it?

My husband, Bil's brother, is also his guardian. When Bil moved here in 2015, my husband made sure "Bil" was registered to vote.

 Last spring, "Bil" registered as a member of the party of his choice.

Then, in the New York presidential primary, my spouse took Bil to the voting place, and Bil voted.  Bil needed some assistance in the physical aspect of voting, but he made his own decisions and voted for the candidate he believed would be a good candidate for the party he follows.

Bil has some intellectual disabilities.  However, he watches TV a lot, and made up his mind who he would vote for.  If that process was influenced by the news channel he watches a lot - well, aren't we all influenced by someone?

Is he less able to vote than a neurotypical voter?

Should his vote count for less?

I say "no" to both.  Bil did vote - which is more than a lot of us do.  And he gave an interesting reason for his vote.  Because he felt the other candidate, the one he didn't vote for, was mean.

Some people would say, he does not have intellectual capability to fully understand the issues. Perhaps he did not totally understand the issues - but how many of us vote for logical reasons?  Think about it.

It's shameful that people with disabilities still find it difficult to vote in the United States.

Thankfully, Bil was able to register without difficulties in our home state of New York.  Shameful that so many with disabilities, who want to vote, find themselves disenfranchised.

It's a national disgrace.

I am proud, meantime of my brother in law, for doing his civic duty.

Did you vote in the last election whereever you live?

Tuesday, April 25, 2017

Unknown #AtoZChallenge

I can't see into the future.  That is part of the reason for this blog.

It's not easy embarking on an Unknown Journey, and on the Blogging from A to ZChallenge.

I didn't fail in the Blogging from A to Z Challenge - I'm still here.  But I have failed in my immediate goal.

I had hoped to blog a book about life with my autistic brother in law, Bil. I hoped such a book could help others in similar situations.  My brother in law is in his late 50's.  Many autistic children, meanwhile, are entering adulthood.

Failure is a good teacher.  It tells you that you have gone in the wrong direction.

Although I am an experienced blogger, the "Blogging a Book" thought was not a successful attempt.  I need to go back and reassess.

That's not a bad thing, though. I know one thing I did seriously wrong - I decided to be a "pantser" (a term in writing) which is what I am, and not plan the book out first.  I was too obsessed with just surviving the A to Z Challenge.

Now, I have to make a choice.  I've helped make so many other choices in the past months and years, on this Unknown Journey I embarked on years ago when the relationship with my husband of over 40 years became serious.

Because I had a disabled father, I was not scared off by having an autistic brother in law (in those days, it wasn't quite like what it is like today, I hasten to add.)  So, I won't be scared off by this failure, either.

For now, I am so close to the end of the challenge, I may as well finish it.  Then, I plan to go back to my normal blogging schedule.

I will reassess blogging a book, while I continue on my Unknown Journey.
I want to humbly thank everyone who has accompanied me on this journey through the month of April.   I hope you will continue to stop by every Friday as I resume my normal schedule after April ends.