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.

Monday, April 24, 2017

Taking The (Measure) #AtoZChallenge

 “If you want to know what a man’s like, take a good look at how he treats his inferiors, not his equals.” – J K Rowling.

I get many chances to witness this, when my husband and I take my autistic brother in law, "Bil", out in public.

He loves to shop, for example.  He has several favorite stores - a drug store, supermarkets, and sometimes, a book store.  He also loves to eat out.

It isn't obvious right away that Bil has many challenges in his life. He can go up to the counter, present his purchase, and pay his money.  Or, in the restaurant, he can read the menu and speak his order.  Bil, unlike some autistic individuals, is verbal.

But if there is any deviation from the routine of paying or ordering, that's where you can see that something isn't right.  Bil will struggle for the right response.  And, his tone of voice is flat.

I've seen many clerks smile when they "get it", but you do get people sometimes that are less than patient.  And that's a shame.

It is so easy to perform small kindnesses.  Kindness is what our world needs a lot more of.

To those who do take the time to be patient with Bil when he is struggling with a rough spot, Thank You.

And, to my readers, new and old, Thank You for joining me on this journey.

My family's unknown journey ahead continues.

Saturday, April 22, 2017

Sheltered (Workshops) #AtoZChallenge

Sheltered workshops are going away due to a Supreme Court decision.  Many advocates say "hurray, it's long overdue."

Others say, "perhaps not so fast".

It may surprise you to know, if you are a regular reader of this blog, that I am in the second camp.

But first, what is a sheltered workshop?  And what is wrong with the concept?

Actually, I think there is a lot wrong with it, but getting rid of them may not be the best thing.

One definition of sheltered workshop is " an organization or environment that employs people with disabilities separately from others."

When Bil lived in downstate New York, he worked in a sheltered workshop environment.  He made less than minimum wage - much less.  He worked part time, was paid by the piece and was transported to and from the job door to door (he also had to pay for that transportation from that meager paycheck.)

How did Bil end up at that type of job?  It was because he didn't succeed in more mainstream jobs. It was long ago, and he wasn't given very much support at all.  No job coaches.  He was left to fend for himself when a manager he liked was no longer there and the replacement (apparently) verbally abused him.

Bil walked off another job.

At the sheltered workshop, if he was sick, he didn't work.  If he wanted to take the day off, he did.  He was never taught the skills we neurotypical take for granted.

So, what happens to people who have been in the sheltered workshop system for 25 or more years?  It's nice to say you will integrate them into the least restrictive job setting they can handle, but, based on years of experience dealing with "the system" I know that there isn't going to be the funding for it.

So, while the "system" pays lip service, people like Bil are in serious danger of falling through cracks.

In point of fact, Bil has not worked one day since he moved from downstate up to where he lives now - going on two years.  Why?  Because of the sheltered workshop phaseout, the workshops up here were not taking on any new employees. Bil was asked if he wanted to work, and he said he was interested in rounding up carts at a supermarket.

But the next time they asked, Bil said he didn't want to work.

And now, the local workshop (the one he may have worked at, given the chance) will be closing on September 30.

As an advocate, I ask: Will Bil ever work again? Will there be a job coach or any support for him?  Or will he be unemployed for the rest of his life?

I suspect, for him, and given the dangerous budget cuts now in the works, it will be the latter.

Tomorrow, Sunday, is an "off" day. Come back on Monday for more on my Unknown Journey.

Friday, April 21, 2017

Resilient #AtoZChallenge

It is a myth that autistic people do not care about the people in their lives.

Someone once mentioned that my mother in law and her autistic son "Bil" have a symbiotic relationship (more on that in a future post).  She went on to say that, when she saw my mother in law and Bil sitting on a bench, taking a rest, they looked like an old married couple.

I wouldn't go that far.  But I would say that they both need each other, tremendously.

When his mother could no longer stay in the house where they had lived for over 50 years, I had thought that Bil would oppose it, and we would have a hard time moving him.

We were wrong, and I still marvel at it.

Part of it, I think, is that Bil recognized that his mother was struggling, and could no longer keep up the house.

Another part of it, I think, was the fact that he was moving closer to his two brothers.  Bil loves them both in his own way.

The move wasn't easy.  In inspecting the house, it was found that the bedroom he had lived in all these years  (in a finished basement) was an illegal bedroom.  In order for the sale to go through, the bedroom had to be torn out.  So, for the last month of the stay, Bil had to move into another bedroom, upstairs.

He did it without much complaint.  Another surprise.

So there Bil was. Ready to leave the house he had lived in all his conscious life.  He had already lost his bedroom.

He packed his own belongings.  Once the house was empty except for the large stuff the mover was moving (including beds!) a next door neighbor friend took him and his Mom in for a couple of nights.

And then it was time for another family member to drive him and his mother up here (we drove back the day before to help get things set up).

The only major crisis in the move was when he couldn't find a pair of his pants.  But, after a couple of days of fussing about it (we kept assuring him the pants would be found in the unpacking process), he announced one day "If you don't find the pants by Tuesday, I want to buy another pair."  And all was well. (We did find the pants, by the way.)

Resilient.  Bil was more resilient than we had ever dreamed.

Don't underestimate him.

Thursday, April 20, 2017

Quirks #AtoZChallenge

We all have quirks, don't we?

Here are some common ones.

When I was growing up, we had a superstition "walk on a crack, break your mother's back". I still will look out, even today, for cracks in the sidewalk.

I was especially interested in one of the common quirks listed in the article I linked to:  aversion to textures.  Why?  I have a number of these, and they seem to be common in a lot of autistic people, too.

When it was my time to start wearing what we, in the 1960's called "nylon stockings", I could not stand the feel of them on my legs.  It felt like I was receiving tiny electric shocks.

Before that, I would not wear clothing with certain textures I considered harsh. I still won't, today, although clothing tags don't bother me as much as they used to.

I suspect that my autistic brother in law, Bil, has certain textural adversions.  There are many foods he will not eat, for instance.  Some of his favorites won't surprise you:  chicken and chocolate.  One may surprise you:  blue cheese.  It's a strong taste, but he likes it.  He will not normally eat veggies, but sprinkle crumbled blue cheese on it, and he (sometimes) will.

There is one more thing he does, though, that is just "Bil". In the middle of a conversation that has no funny content, he will sometimes start laughing. It doesn't last long.  "What's so funny?" his mother may ask, but in an accepting way.  I don't think it is related to anything sensory but I've also read it can sometimes be a reaction to pain.
Do you have any quirks?

Wednesday, April 19, 2017

People (First) #AtoZChallenge

People with disabilities are not their disabilities.

They are People first.

It took so many years for our society to realize that.  For years, people with disabilities were hidden away, or had to struggle without much support.  My own father suffered with a disability from a head injury he suffered in his early 30's, and felt the lash of discrimination.  Growing up with him, his disability was hidden from me until I was old enough to figure out something was wrong.

Now, I advocate for an autistic brother in law.



Watch how people dealt with disabilities years ago, when our President didn't have the full use of his legs.

The People First philosophy is person centered - the person is a person, not their disability.  They deserve to be in charge of determining the path of their life, the activities they indulge in, and what supports they may need.

Right now, to be truthful, the People First philosophy sometimes causes us problems.  It is not designed for a disability where the disability itself can impair a person's ability to understand.  Bil rejects almost everything new, including opportunities to develop skills that will help him be more independent.  People who are autistic tend to resist change.  In some ways, don't we all?

He says "no" and that's the end of it, until he says "yes".

So, how does a person who has intellectual impairments learn to advocate for him or herself ?  How do they learn this when they have spent a lifetime (Bil is in his late 50's) not being encouraged to grow and think for themselves?

People First sounds good, but without a lot of support, people like Bil, who grew up in a system where others sougt o control the lives of those like him, are going to be left behind.

Whether Bil can learn to advocate for himself remains to be seen. 


Tuesday, April 18, 2017

Ordinary #AtoZChallenge

Some of us crave the unusual.

My autistic brother in law, Bil, craves the ordinary.  The routine.

Definitions of Ordinary: Normal.  Commonplace.

In 2015, Bil's world was turned upside down.  He had far from an ordinary year.

He had lived all his life with his mother. For over 15 years, it had just been the two of them, in a house that once had held a large, growing family.

The house they lived in was a split level, meaning there were stairs everywhere.  Stairs to the bathroom.  Stairs to the bedroom.  Stairs to the kitchen.  His mother could no longer navigate the stairs.  She was developing congestive heart failure, too.

She had fallen several times.  Her injuries were piling up.  Each fall was harder to recover from than the last.

And, she was running out of money.  The house hasn't started out in an expensive location, but it was now.  She couldn't afford the taxes.  Her closest child had to move in with a friend because of unemployment, and moved some 40 miles away.  Her support system had been strong, but was weakening.

So she had to sell the house and move.  And Bil would be moving for the first time in his conscious life.  Moving some 150 miles away, to an apartment he had never seen, for a reason he perhaps couldn't understand.

It would stress any of us out.  But Bil made it.  How, is a story for my R post, in my Journey Through the Unknown.

Monday, April 17, 2017

New #AtoZChallenge

New.  It's usually a good thing.

Many of us crave "new".  "New and Improved"! trumpet products, hoping to increase sales.

Not so for my autistic brother in law.

He wants the familiar, but way beyond what you and I might feel comfortable with.  I can remember, several years ago, when his radio broke.  He had to get a new one.  It was traumatic for him.

Once, or so I am told, they changed the color of Bil's chair at the sheltered workshop (more on them in my "S" post) and it took him a month to be comfortable with it.

The familiar is what Bil craves. He wants the familiar because it is predictable.  When it is hard to figure out the world, he clings to the familiar. He's already figured it out.

If my husband, when driving Bil somewhere, takes a different route, Bil will immediately exclaim anxiously, "where are you going"?

If, when shopping or running errands with Bil, we do something in a different order, we need to tell Bil so he is prepared.  Sometimes, we forget, and he exhibits anxiety once again.


No, new isn't always improved, when it comes to Bil.

Is this blog new to you?  If it is, I invite you to join me on my "journey through the unknown".

Saturday, April 15, 2017

Mortality #atozchallenge

We all face endings in our lives.  It is hard for all of us to cope, but we have resources - intelligence, life experience, and the ability to reach out for help.

My brother in law, "Bil", is about to reach an ending in his life.  And his disability limits how he can cope, or reach out for help. 

Today's post is about mortality.

My mother in law will turn 90 later this year, as my husband and I turn 65.  She is not in the best of health.  Without Bil, and some other assistance, she wouldn't be able to live independently.

One day, perhaps soon, perhaps not, she will no longer be able to take care of Bil.  And, eventually, she will reach the end we all do, because we are all mortal.

I've wondered, for years:  How will Bil react to this ending in his life? I suspect that it will be different from when his father died, nearly 20 years ago.  Bil didn't really react to it, not in a way that we not on the autistic spectrum would recognize.  In fact, he blamed the family cat for his father's death.  (His father died in his sleep from a heart attack).  How he came to this conclusion, I don't know.

Bil's  father didn't participate that much in Bil's upbringing.  I don't remember much interaction between Bil and his father, in fact.
None of us is getting younger.  His two brothers and his two sisters in law are all older than Bil is.  And that's another worry, too.  Autism does not shorten your life span.  Bil is in better health than all four of us.  Chances are, we will all predecease him.

I dread the day when we will find out the answer to the question of how Bil will react to his mother's death.  His mother has been his caregiver, his companion, his interpreter of the world, his advocate, for his entire life.   The conversations about this are going to have to come soon, though.  That is also something else we must face.

How do we approach it?

It's all part of "M" day for the Unknown Journey Ahead, my theme for the Blogging from A to Z Challenge.


Friday, April 14, 2017

Learning #atozchallenge


I admire my mother in law for some of the things she did when Bil, her autistic son, was younger.  Bil is in his late 50's, and back "then", children with developmental disabilities were scorned by society.  Parents were encouraged to institutionalize them.

Bil was never institutionalized.  And he was included in family gatherings.  He was never hidden away.

But, as protective and loving as my mother in law was, there were also things she did that didn't encourage her son to develop.   Nor did she (or her husband, while he was still alive) do anything to find a home for him where he could live when she could no longer care for him.  In fact, she turned down several opportunities for decent placements in the past few years..

Now, this job has fallen on my husband, Bil's guardian, Bil's other brother, and their wives.  We are all older than Bil, and chances are, he will outlive all of us.

If Bil had been a girl, things may have been different.  But my mother in law grew up in a world where men did not do household chores and she was socialized into that world.  As a result, Bil can barely make a bed, fold towels the way she wants, or do other things that would help her out tremendously as she struggles with increasing mobility issues and injuries (including an arm injury) from past falls. Why? Because he could not do it to her standards.

We've seen this happen, especially recently, when she's needed his help.

He can take out garbage (when prompted).  He can carry groceries (when prompted).  At one point we taught him to use the microwave, but  she hasn't encouraged him to maintain and build on that skill.

So, in a way, this has come back to hurt her, too.  It's hard for Bil to learn when he isn't given the opportunity.  It is hard for him to learn when he is not encouraged to be helpful.

Some years ago, Bil's other brother and his wife spent a lot of time trying to teach Bil skills he will need if he is to live in the way that he wants to live. We've done some of that, too.  It's an interesting process.

As one example, Bil learned to use a key where he used to live. But when he moved to where he lives now, he had to be shown all over again.  His problem solving skills are impaired, and, when you think about it, no two keys work exactly the same.  He won't try to figure it out, though-he will just stand there and wait for someone to show him.  Learned helplessness?


We have to keep reminding him to bring his wallet when he goes somewhere so that he will have ID with him.

Now, it finally appears we may have some help with teaching Bil skills he would need to increase his independence, but how it will turn out we don't know.  Perhaps, with someone not a family member, he will finally start to develop skills he will need in "life after his mother".

Learning and teaching both will be a continued challenge.
All part of our Journey through the Unknown.

Thursday, April 13, 2017

Knowledge - ( Five Things to) Know #atozchallenge

Knowledge is indeed power.

If you have a child with a developmental disability or a medical condition, or if you are a caregiver for any reason, you learn quickly that the more you know, the better prepared you will be for your role.

In our lives with Bil, my autistic brother in law, we have learned a lot.  Today, I want to share some of those things with you.

1.  Always express appreciation for the time people in non profits are taking with your "case".  They have heavy caseloads.

2.  Educate yourself enough to ask questions that matter.  Something we have discovered is that many knowledgeable people will gladly answer questions, but won't volunteer information unless you ask specifically.

3.  Organize, organize, organize!  Have a book where you put information like doctors, names and addresses, appointments, items discussed.  Keep medication lists current. (I'm sometimes guilty of not following my own advice!)

4. If you have a meeting with someone, be it at a school or a non profit, always write or email after the meeting, especially if something was agreed upon.  My philosophy is, if it isn't in writing, it doesn't exist.  Put a copy in your book.

5.  It can seem overwhelming at times.  If there is a support group in our area, check it out to see if it meshes with your needs..  If it does, great!  If you don't, use the Internet to find other possible groups.  You can not do it alone.

Thank you for joining me on my Journey Through the Unknown.

Wednesday, April 12, 2017

Journeying (The "Origin" Story) #atozchallenge

My theme throughout the Blogging from A to Z Challenge has been Journeying Through the Unknown, a twist on the title of my blog.

In this blog, as my readers know, I blog about my relationship with my autistic brother in law and some thing I've learned along this journey.  But I haven't blogged yet about how we met.

When I first met Bil, I was 18 and a freshman in college.  I had met my future husband in one of my first semester college classes.  After dating him for several months, I was invited to his house for Sunday dinner. I was a girl from New York City.  He lived in a suburb that was still somewhat countrified, complete with a nearby dirt road.

City girl.  Country boy.

To say I was nervous was an understatement.  We were of different ethnic backgrounds and different religions.  In the early 70's, that mattered.  A lot.

Believe it or not, knowing I was going to a Sunday dinner in an Italian household, I was scared that I would be served spaghetti and that I wouldn't be able to gracefully wind it around my fork.  I was terrified that I would plop the whole dish in my lap.

I was so scared, I literally made myself sick with a stomach ache.  And that's all I remember about that day.  I don't remember anything about meeting Bil.  And, with my future in laws dead set against our relationship,  I didn't have many invites to their house.  In fact, at one point, I was told I might be welcome there "twice a week".

How ironic the way life has turned out. We married as soon as we graduated college (and, in fact, we moved far away as soon as our finals were over; we never went to our graduations.  We just wanted to get out of what had become a toxic situation for my husband.)  We didn't move back for twelve years.

For so long, we were told don't worry about Bil; we have his future all covered.

That was not the truth, not even close.

The unknown of autism, the unknown of my brother in law Bil's future, the unknown of the risks we (I at my husband's side) will need to take and the unknown sacrifices we will need to make in the years ahead, especially once my elderly mother in law, who has been caring for him all his life, can no longer do so, are all part of the journey for me.

But my brother in law, "Bil", has his own journey to take, with us, or without us.

I hope you will continue to join me on my Journey Through the Unknown.

Tuesday, April 11, 2017

Independence #atozchallenge

All of us want to be independent.  For some of us, independence comes naturally.  For others, it can not be achieved without a lot of help and support.

My autistic brother in law Bil wants to be independent, or, at least, to live by himself once his mother is out of the picture.  The fact that he is autistic does not mean he can't be independent - many on the spectrum do live independent lives.  But others can't.  Overall, given his skills, abilities and personal challenges, people who work with him feel he won't get there without a lot of work and effort.

The question is - can he ever achieve that?

He's always lived with his mother (with his parents, before his father died) and has had his Mom to do things for him. To cook.  To clean.  To do laundry.  To transport him to the shopping outings he loves.

Two years ago, his Mom had surgery, then experienced complications and had to be hospitalized and in rehab for about five weeks.  Her driving days ended - her last drivng experience was right before the surgery.  It was an interesting time. During that time, we moved Bil and his Mom up here to be closer to family.

During Mom's hospitalization and rehab,  Bil did not want to temporarily come and live with us, or the other brother who lives in this area.  Instead, he wanted to stay in his apartment.

Quickly, we learned some things.

Garbage had been left the day of his mother's appointment (she went from that appointment right to the emergency room).   The day after the hospitalization, we walked into that apartment and almost passed out from the smell. We had forgotten about the garbage, and Bil was oblivious to the smell, or the fact that the garbage hadn't been taken out.   One of his jobs around the apartment, incidentally, is to take out the trash.  Without his Mom there to prompt him, he never did it.

That wasn't all.

We had to spend time encouraging Bil just to answer the phone.  We would visit daily but also would call from time to time to make sure he was OK. 

We had already known, in food shopping (because he loves to go to stores with us) that he has no clue about the prices of food.  If he wants blue cheese (one of his favorites) he will just pick some up, not even looking to see if it is the $10 lb type or the gourmet $50 a lb type.  This man who lives on Social Security disability has no clue how to budget, because no one ever taught him.

We are trying to get some of these skills developed in a program my husband was just able to get for him, called Community Hab, but he has to OK the skills being worked on and he said "no" to almost everything when they drew up his plan.

He doesn't understand the connection between the skills and his desire to keep living where he does when his mother finally can no longer take care of him.

Making him understand (we have to assume he can, unless he proves us otherwise) is our next challenge, in between working for a living and being caregivers for his mother.

"I" day on the Blogging from A to Z Challenge.

Monday, April 10, 2017

Hate Has No Home Here #AtoZChallenge

It's unspeakable, hating people for being different.  There are many unspeakable things that we have had to face in recent months. 

Symbols of a political party that once exterminated millions of people being painted on subway walls and buildings.

Desecration of cemeteries. 

People who hate feel enabled to express themselves more openly.  Hate crimes are on the rise.

My brother in law, "Bil", cast his vote this past November. He had a simple viewpoint:  one of the candidates was "mean".  That candidate didn't get Bil's vote.
Binghamton, New York, March 2017
But while we are on the topic of hate and homes, there is a hate that Bil may not know exists.

Some people hate him, without knowing him, because he is autistic.  In fact, when I Googled "people who hate people with autism" I got 10,900,000 hits. OUCH.

Have you ever heard of the expression NIMBY? It stands for Not In My Back Yard, and the fear people have of people different from them living in their neighborhoods.

That includes autistic people, and others similar to them.  As a result, it is hard for people with developmental disabilities such as autism to find decent housing.  I have read a statistic stating that over 50% of adults with autism live with family members.  Some of those family members are elderly, some even in their 90's. Parents fear for the future of their children.  It's a nationwide problem, not just where we live in New York State.

That is what Bil has done all his life - lived, first with both parents, and, for the last almost 20 years, with his mother.  But now, with age and health issues,  she is moving closer and closer to the day when they will have to part. 

My husband and I, and his other brother and his wife, are all older than Bil is, and, in fact, he is healthier than all of us are.  Ironic, isn't it?

We've been trying to find good housing for Bil, as it is his wish to continue where he lives after his mother is no longer able, but it is a long, rough road.  Explaining this road would be too long for this challenge, but in short, he could not afford the apartment where he is now. 

Maybe I can fit some information into another letter, another day. 

It's all part of Journeying through the Unknown.