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.