Treasure Your Vote

I originally posted about politics and one of my in laws being able to vote on November 8, 2011,  election day that year.  

As my regular readers know, my spouse has a younger brother who is autistic.  He is also a frequent listener to the news and is interested in politics.  We saw him recently, and he told us he was voting next year.  He told us his choice for President, although no one has earned a party nomination yet.

In 2016, he voted in the New York presidential primary in April.  He made his mind up from watching the TV news shows he watched.

Not only that, he voted for President, and, furthermore, voted the opposite of how his mother (who he relied on so emotionally and physically at the time) was going to vote.  It led to some interesting comments from my mother in law, who wasn't seeming to like the fact that he wasn't just following along with whatever she said.

Since then, he has made gains in independence, with a lot of help from many people.

In 2018, though, I don't think he voted. We don't press him one way or the other, as he has a right to his private thoughts, so we don't know why.  I wonder, though, if the intensity of this election cycle overwhelmed him.  His mother was also terminally ill.  She died the day after Thanksgiving in 2018.

Voting, for someone with a disability (intellectual or physically) can be a hard thing.   Believe it or not, a person with intellectual disabilities can actually be stripped of their right to vote.  But there is support out there, and information.

It can still be difficult.  In fact, my brother in law, who is in his 60's, voted for the first time in 2004.

I repeat this post in honor of my brother in law.  I also honor those who didn't have the right to vote for years in our country, including women, people of color, Natives, and others.

Please, if you are in the United States, vote today if you didn't already early vote.  Every vote counts, even for offices you may think hold little or now importance.

And now, my post from 2011.

From November of 2011 - Autism Votes (with some edits)

A Facebook post by a Facebook friend of mine, a woman who has an adult son on the autistic spectrum, inspired this post.

Her son voted for the first time in 2011. Although she is his legal guardian, her son retains his right to vote.  She told her Facebook friends that her son has looked forward to exercising his vote for years.  This was a big day for him, having turned 18.

It's also a big day for our country for another reason.

Her son is on the leading edge of a wave of adults and soon to be adults with autism.  

Just wait until all those adults with autism, who have been given the tools and supports to vote, start to exercise that right. 

Growing up, my brother in law was never encouraged to vote nor were people like him ever expected to vote.  This just didn't happen.  The belief was that they weren't "normal".  So their voices, and opinions, were unheard.

In 2004, a person who worked with him in a support role decided that my brother in law should exercise his right to vote.  He watches a news station that carries a lot of political discussions and has formed very definite political opinions.  Why shouldn't he vote?  She worked with him, he did vote, and he was very proud of voting for the presidential candidate of his choice.

For the first time, his voice was heard.

It is not easy for a person with autism to vote, as described here, but it can be done with proper education and proper support.  This issue isn't restricted to the United States, either.

It will be interesting to hear what these new adults with autism have to say in the voting booth.

Labor Day Shoutout

Tomorrow, in the United States, is Labor Day, a holiday supposed to honor those in the United States who labor.

In the year of COVID-19, of course, this has taken on new meaning.

Back in March and April, when a number of states (including my New York State) had to shut down, those classed as essential workers had to stay on the job.  I was fortunate - I am classed as an essential worker, but was able to telecommute. My son, on the other hand, had to continue to work at his workplace.  My spouse, now retired, would have been an essential worker in constant contact with the public if he was still working.  My spouse and I, both senior citizens, would have had to make the choice of continuing to work or not.

At least spouse and I had a choice.

Another of my cousins continued to work retail (and is still doing so) in an essential retail setting.  Another one of my cousins is a teacher in New York City.  I've been told by her mother, who also worked for the New York City schools but is now retired, that many teachers are taking early retirement.  They literally fear for their lives. 

Another one of my cousins is an emergency room in a Midwest hospital and his niece entered nursing school this past August.

For me, and many of my readers, this has become personal.

When my autistic brother in law contacted COVID-19 in April, my family entered a world where our only contact with him was through his health care workers.  He was hospitalized for three weeks and was in a skilled nursing facility set up by the agency that provides his housing and services for another two weeks.  One of their workers took him to the ER and stayed with him until the hospital made her go home.

Thankfully, she did not get COVID-19.  She's leaving her position later this month and our family wishes her the best.  Other employees at similar agencies paid the ultimate price.

The health care workers and support staff we spoke to almost always were able to take the time to talk to us, provide updates, and reassurance, and just kept on keeping on.  They worked hard and yet they took the time to support US.  I will never forget that.

(I will say here that his need for hospitalization was so rapid after he started to show initial symptoms that it was past scary.  I don't have words for anyone who thinks this disease is "the flu" or, worse, a hoax, or even thinks about harassing health care workers.)

I would like to say one last thing.

Essential workers do not care if you support the Democratic or Republican candidate for any office.  They are there to serve you.   By serving you, they sometimes put their lives in danger.

In return, it would be a wonderful thing if everyone in our country could show respect for them in turn by their actions.  Many of these workers put their lives on the line for our health, for our food, for our transportation, for our packages in the mail, each and every day.

This year, honor them on Labor Day with your actions, today, tomorrow and every day.

If you have a story about essential workers (yourself or someone who has helped you), I'd love to know in the comments.  And, as always, I reserve the right to remove attempted posts that are disrespectful or inappropriate.

Respect Recovery and Remembrance #AtoZChallenge

Oh dear, I tried to Resist but I'm deviating from my A to Z theme today.

I haven't blogged about my autistic brother in law, "B", for a long time.  He's had a lot of life changes in the past almost five years.  Here's a partial list: his elderly mother needing to be moved up here so family could take care of her (and, as he lived with her, he had to come along), her eventual death, and him moving into what is called supportive housing.

But all that was to pale besides what happened two weeks ago yesterday.

We got a call that he was being taken to the emergency room - a nurse at the agency that runs the housing and provides other services to him didn't like what she saw in her daily screening of the occupants.  His oxygen was lower than it should be. He was running a fever.

He was seen at the ER, given various tests, and released.

But the next day he was worse.  He was coughing, his oxygen was still low and his fever had returned, higher.  This time, at a different hospital, he was admitted and placed into isolation.  That was two weeks ago today.  He was monitored continuously in this ward that once was a pediatric ward.  It had been repurposed, but the baby monitors remained for monitoring.

A COVID-19 test came back two days later - positive. He was moved into a COVID ward but they couldn't maintain his oxygen level and he was moved to another COVID ward where he could receive extra oxygen support (high flow oxygen) and a lot more monitoring.  He had double pneumonia (we found out after we were told initially it was only in one lung).  He was on IV antibiotics and a number of other medications. 

He's been in that ward ever since.

Let me tell you about that ward, which we have never seen.  We have never seen any of the various nurses who looked after him, either. (My spouse did meet the hospitalist who has been caring for "B" back when spouse was hospitalized last year.)  But I know their names, and they will have a Respectful place in our hearts for the rest of our lives.

This COVID ward is a former Respiratory ward.  It has negative pressure, meaning air can only enter.  Needless to say, everyone working in there wears the PPE we have come to know and Recognize.

As is the Rule, none of us were able to see him.  His family became the nurses and doctors, and they would also update us when we called. 

Eating was too exhausting for most of his time in the ward.  He didn't want to answer the phone, many times.

The head nurse at the agency providing his housing was a tremendous support too, as were some others who have worked with him.

He started to make slow progress several days ago, and made substantial progress (slow but that's how it goes with the coronavirus) yesterday, when he was able, with help, to stand up and be placed in a chair.  Before then, he could hardly move without his oxygen slipping down below acceptable levels.  He lasted an hour in the chair before he had to return to bed and the land of healing sleep.

He has a long Road to Recovery.

We Realize how close "B" may have come to the brink.  With that, we Remember the tens of thousands who passed over that brink, and entered the next world.  We know they were alone except for those nurses and doctors.  Each lost life was a tragic loss.  Those aren't statistics, they were people. Everyone I know who lives in New York City, where some of my family lives, knows one or more persons who are no longer in their lives.

Calling the essential workers: the health care people, the transit workers, supermarket employees, the mail deliverers, the sanitation people, farmers, meat processors and more, "heroes", can not be idle talk when all of this finally Resolves, but that is a post for another day.

And for you out there who think the coronavirus is no worse than the flu:  I will put this as succinctly as possible.  If you develop any symptoms, call your health provider right away.  It could be nothing.  And please, please, listen to those health authorities.

To all those who are or having been involved with my brother in law,  I present a virtual bouquet of flowers. This was taken in April of 2017 in Richmond, Virginia.

Stay well, my dear readers.  Stay safe.

"R" day in the Blogging from A to Z Challenge.  My theme probably doesn't matter anymore.

Autism Votes

I originally posted this on November 8, 2011, which was election day.  I repost it with some edits and updates.

My autistic brother in law, who will turn 60 shortly, has made up his mind he will not vote in November.  Two years ago it was a different story.  He voted in the New York presidential primary in April.  He made his mind up from watching the TV news shows he watched.

Not only that, he voted for President, and voted the opposite of how his mother (who he relied on so emotionally and physically at the time) intended to vote.  It led to some interesting comments from my mother in law, who wasn't seeming to like the fact that he wasn't just following along with whatever she said.

In a way, it is amazing that he never voted until 2004.  And now, he won't even tell us what changed his mind.  We don't press him, as he has a right to his private thoughts.  I wonder, though, if the intensity of this election cycle has overwhelmed him, in addition to the fact that his mother is terminally ill.

I repeat this post in honor of my brother in law.  And please, if you are in the United States, vote on November 6.  Please.  This may be one of the most important elections in our country's history.

From November of 2011 - Autism Votes

A Facebook post by a Facebook friend of mine, a woman who has an adult son on the autistic spectrum, inspired this post.

The day I first posted this was election day in the United States, where I live.

Her son voted for the first time that day. Although she is his legal guardian, her son retains his right to vote.  She told her Facebook friends that her son has looked forward to exercising his vote for years.  This was a big day for him.

It's also a big day for our country for another reason.

Her son is on the leading edge of a wave of soon to be adults with autism.  Some say 1 in 100 live births in this country result in an individual with autism.  Not too long ago it was 1 in 166. Then it was 1 in 150.  (Update, in 2018 it appears it may be as high as 1 in 59, according to the Center for Disease Control).  Let's step back a moment and see what that means.

Those babies are going to grow up.  In fact, the "leading edge" of the autism epidemic I just mentioned are now legal adults in many states, including New York (age of 18).  Just wait until all those adults with autism, who have been given the tools and supports to vote, start to exercise that right. 

Growing up, my brother in law was never encouraged to vote nor were people like him ever expected to vote.  This just didn't happen.  The belief was that they weren't "normal".  So their voices, and opinions, were unheard.

In 2004, a person who worked with him in a support role decided that my brother in law should exercise his right to vote.  He watches a news station that carries a lot of political discussions and has formed very definite political opinions.  Why shouldn't he vote?  She worked with him, he did vote, and he was very proud of voting for the presidential candidate of his choice.

For the first time, his voice was heard.

It is not easy for a person with autism to vote, as described here, but it can be done with proper education and proper support.  This issue isn't restricted to the United States, either.

It will be interesting to hear what these new adults with autism have to say in the voting booth.


I hope that many of them, unlike my brother in law, don't decide to sit this one out.

Coming Attractions

Once upon a time, our entire lives were ahead of us.

Now, increasingly, they are in our rear view mirrors.

Many of us of a "certain age" are caregivers for elderly parents, or former caregivers (because they have passed on).

My situation isn't typical.

My parents passed away when I was relatively young (I was 12 for my Mom, and 33 for my Dad). I never knew my Mom as an adult, but, on the other hand, I never had to see her age.

But, I am one of several caregivers for my mother in law, who is a nonagenarian, and for my autistic brother in law, who is close to the beginning of his senior years.  So I am getting to see our system from two different angles - the angles of the treatment of old age, and the treatment of those with developmental disabilities who are aging.

And I am getting to see my mother in law age. I’ve known her for 47 years.

I see the coming attractions and I want to yell out "no thank you, I don't want to be part of this movie!  Get me out of the theater!"  But then I consider the alternative.

I am also seeing a part of the health care system that I haven't before.

So, as a blogger, what do I do?

Perhaps I just roll along, trying to find the beauty in life, and make the best of it.

Just like many of us are.

Happy Birthday At Last

I haven't blogged for a while about "B", my brother in law with autism.

He has a November birthday, and last year it didn't go as planned.

His mother was in rehab, after a hospitalization for pneumonia.  The plan was for us to bring "B" to the rehab place on his birthday last November, have a nice visit, and then take him to our house for a small birthday dinner.

"B" loves to eat at the Olive Garden (a chain Italian restaurant here in the United States).   Some people put chains down, and I would rather eat at a local restaurant (support your local business is one of my mottos.) I will also admit that some chains (including the Olive Garden) do a great job of listing nutritional content.  I look for calories and sodium.  They also do a good job of pointing out allergens in their food.  So this would have been a good choice.

But with his Mom in rehab, we told Bil "why don't we wait until she is out?". She was supposed to get out in a couple of more days.  He agreed.

The visit went well, until it didn't go as planned.  His Mom fell.  On her back.  Help came immediately, and she didn't seem to be hurt (except for her dignity).  But they couldn't take any chances, because she had hit her head on the floor.

We spent the rest of the day in the ER, where we waited for her to get a CT scan.  The results were normal.

Thankfully.

While "B" sat there, I wonder what he thought.  He doesn't talk that much, and he never did say. 

This year, we are hoping for a much less eventful dinner.

Sometimes, uneventful is good.

It will be a good time to pause, before plunging into The Holidays.

Day 13 of NaBloPoMo.

Throwback Thursday - 1 in 100 - Autism Votes

I originally posted this on November 8, 2011, which was election day. I ask myself:  has anything changed for the better now that more of the wave of babies born with autism enter adulthood?

My brother in law, who is in his 50's, and has autism, will vote this November.  He also voted in the New York presidential primary in April.  He made his mind up from watching the TV news shows he watched.

It may be easier for people with developmental disabilities to vote.  At a recent review at a program where my brother in law attends, they asked if he was registered to vote, and he even volunteered who he was going to vote for.

It's amazing that he never voted until 2004.

I repeat this post in honor of my brother in law.  And please, if you are in the United States, vote on November 8.  I'll blog about this more later this week.

1 in 100 - Autism Votes

A Facebook post by a Facebook friend of mine, a woman who has an adult son with autism, inspired this post.

The day I first posted this was election day in the United States, where I live.

Her son is voting for the first time today.  Although she is his legal guardian, her son retains his right to vote.  She told her Facebook friends that her son has looked forward to exercising his vote for years.  This is a big day for him.

It's also a big day for our country for another reason.

Her son is on the leading edge of a wave of soon to be adults with autism.  Some say 1 in 100 live births in this country result in an individual with autism.  Not too long ago it was 1 in 166. Then it was 1 in 150.  Let's assume for the sake of argument that the 1 in 100 figure is accurate.  Let's step back a moment and see what that means.

Those babies are going to grow up.  In fact, the "leading edge" of the autism epidemic I just mentioned are now legal adults in many states, including New York (age of 18).  Just wait until all those adults with autism, who have been given the tools and supports to vote, start to exercise that right. 

And,  it is never too late.

My brother in law, who has autism, is in his 50's. He voted for the first time in the 2004 Presidential election.  Growing up, he was never encouraged to vote nor were people like him ever expected to vote.  This just didn't happen.  They weren't "normal".  So their voices, and opinions, were unheard.

In 2004, a person who worked with him in a support role decided that my brother in law should exercise his right to vote.  He watches a news station that carries a lot of political discussions and has formed very definite political opinions.  Why shouldn't he vote?  She worked with him, he did vote, and he was very proud of voting for the presidential candidate of his choice.

For the first time, his voice was heard.

It is not easy for a person with autism to vote, as described here, but it can be done with proper education and proper support.  This issue isn't restricted to the United States, either.

It's a new day, and soon, the politicians will feel the power of that new voting block.  It will be interesting to hear what these new adults with autism have to say in the voting booth.

Day 27 of the Ultimate Blog Challenge.

Autism

Welcome to day one of the Blogging from A to Z Challenge.

Starting today, over a thousand bloggers are blogging daily throughout the month of April (except on Sundays), starting with A and devoting each consecutive day to another day of the alphabet.

My theme is "Days of our Lives".   It encompasses anything that touches my life, or those whom I love, and today, I blog about my brother in law.

Do you have a person with the developmental disability of autism in your life? I do.


April is National Autism Awareness Month.

Blogging about A for Autism is a natural for me.

For me, reminders of autism are everywhere - even in stores.  Even in purses.

I am the proud sister in law of a man in his 50's with autism, a developmental disability that impacts the ability of a person to interact socially and communicate with others.  Autism is a spectrum disorder - some individuals can live lives with less help than others.  Many never live up to their full potential, thanks to the barriers of society, although there is increasing hope that more can be employed in good jobs. 

I blogged about my brother in law last year for the A post and wanted to update you on what is going on in his life.

My brother in law has had a year that would have challenged many of us who are neurotypical (people who do not have autism).  He had spent his entire life with his mother, who is now in her late 80's.  She made the choice, long ago, to have "B", as I call my brother in law on my blog, stay with her.  Her health, these last couple of years, has been an issue which my brother in law has had to adjust to.

We (my spouse and I) worry about his future - a lot.

Last July, his mother needed surgery.  What was supposed to be several days in the hospital turned into about three weeks of hospitalization and rehab.  During this time, "B" lived without his mother, in their home, although he was able to visit her several times a week.  He was cared for by his sister during the week, and my spouse and I (we lived about 150 miles away at the time) on weekends.

In August, he and his mother moved up to where we live, into an apartment several miles from us.  They also have another brother, and sister in law, who live about 20 minutes from them.

In October, his mother had to be hospitalized again, and this time, between the hospital and rehab, she was gone for some five weeks.  This time, "B" made the choice to stay in the apartment, under our supervision.  It was an interesting experience, a learning experience, for all of us, and I will blog about it another time.

There was only one night, out of all those nights, where he asked to stay with us.

"B" has a long way to go and may never be able to live independently without a lot of support.  But he proved his strength this past year - and we are proud of him.

One thing I must admit is that my relationship with "B" is not that of pure love.  I do, however, want to fight for him and his right to enjoy life to the fullest of his abilities. For example, there is the inspiring story of the "first man diagnosed with autism" (not really true), who is still alive.

Do you love a person who interacts with the world in a different way?

Now that you have visited me, go visit others participating in this fun challenge, and enjoy viewpoints from all over the world.

Throwback Thursday - Who Among Us Is Worthy?

Thirty years ago today, my father passed away.

What can I say to pay tribute to the man who raised me after my mother died when I was 12?

I can remember January 21, 1986 so well.  I lived in Arkansas and worked in Fayetteville, their third biggest city.  It was a mild winter day.  I sat outside at lunch and wrote a letter - a letter! - to an aunt living in Iowa.  Went home, took care of my chickens, had supper, and then got the phone call from my aunt who lived in New York City.

He died at a VA Hospital in Brooklyn.  My father had served in World War II and had suffered a head injury (traumatic brain injury) that left him suffering from seizures and with some other issues.  Like many disabled vets, he faced prejudice and a medical system that did not always work for him.  He also built a life, marrying, and fathering a baby girl-me.

He never stopped loving his country, and never stopped trusting the VA.  And, to me, he was a good father.

In a way, having a father with a disability prepared me for being the sister in law of a man, my spouse's youngest brother, who is developmentally disabled with a condition called autism.

Thinking about that made me think about a post from my blog, written in 2012.

Was my father less worthy as a person because he had epilepsy?  Is my brother in law less worthy because he has autism?

Who Among Us is Worthy?

As the sister in law of a 50ish year old man with autism, I have to say something about a recent event.  A little background first.

I know someone who, when a boy, was helped tremendously by Children's Hospital of Philadelphia (CHOP).  He had an illness that stumped doctors in this area.  His health failing, he was brought to CHOP and they were able to diagnose his illness.  He received treatment.  He recovered.

He was worthy.  Our medical system worked for him.  He is an adult today.

And then, there is the case of little Amelia Rivera, who was recently refused a kidney transplant by CHOP because...well, she suffered from Wolf-Hirschhorn Syndrome, a genetic disorder that causes many difficulties for those with it, including intellectual disability.  Finding a donor was not a problem (as it is in too many cases of kidney transplant.)  CHOP refused to do the transplant because she was, quoting what her parents said the doctor said:  "Mentally retarded".

After the mother went public on a support site, the story went viral.  In all fairness, we probably do not know the whole story.  But, in reading some articles, and comments, and lurking around on CHOP's Facebook page, it would appear that this kind of medical decision is not an isolated instance.  From what I can tell, CHOP is rethinking their processes, and are continuing dialog with little Mia's family.

Not that long ago I blogged about nostalgia not being all it's cracked up to be.  My father had epilepsy due to a brain injury he suffered in his service during World War II.  There was little nostalgia associated with the prejudice he suffered when he came back home.  In fact, in some states, I would not have been born because he might have been subject to involuntary sterilization.

So....in our modern day and age people with disabilities are still being denied medical care. Their lives just aren't as valuable as yours or mine.

So what will happen when my brother in law needs medical treatment? Thank heavens that day has not yet come. But will he be deemed worthy?  Until recently, insurance discrimination against people with autism was very much a problem, and it is only slowly being addressed by state laws prohibiting such discrimination.  Do we need legislation to prevent medical discrimination in care, too?

Some have written a lot more elegantly than me on the issue of the worthiness of Amelia to get this transplant. 

If we say we value life, it has to be all life-not just the lives of the smart, the lives of the wealthy, the lives of the beautiful.  Our medical system is broken, for this and other reasons.  We all have stories to tell from our own experience. Medical bills we can't afford, insurance that won't pay, not having insurance and suffering the consequences.  And now....we'd better not be disabled, either.

We must fix it, for many reasons, including the most selfish reason of all.  One day that person being denied care may be - you.  Or me.

2016 postscript: Amelia's case had a good resolution, incidentally- she finally received the kidney transplant.

The End of Tradition

This coming Christmas will be the end of a tradition for my in laws.

For the first time in many, many years, we will not be having Christmas with relatives in Yonkers.  Earlier this year, due to health and other issues, we had to move my mother in law up here, and about 150 more miles (approximately 241 km) away from those relatives.  My mother in law, who is now in her late 80's, can no longer travel.

One of the relatives down there will be 104 years old early next year.  She can't travel, either.

Fortunately, a family member living in New York City will be able to spend Christmas with the Yonkers branch of the family, but it won't be the same.

Especially for "B", my brother in law with a developmental disability called autism, who lives with my mother in law.  He wants to continue the Yonkers tradition, because change is upsetting to him.  And we all know there has been a massive amount of change in his life last year.  He had to move from the house he had lived in for almost all of his life. He had to witness two hospitalizations of his aging mother, and weeks in rehab.  His entire routine was disrupted.

But he managed (and I still need to blog about that).

He will manage this change, too, although he came up with a couple of schemes (he's good at that, too, by the way) to try to get himself down there while his mother spent time with - well, he doesn't understand about social relationships and the fact that his schemes would not work for that reason.

But we are not going to let her be alone for Christmas.

So, this will be new for all of us.  I will miss my cousin-in-law's manicotti tremendously, but look forward to a quiet Christmas free of travel this year.

Have you had to let go of a tradition?

Beyond Belief

Today, I wish I had the eloquence of a skilled best selling author.  I wish the thoughts could flow off my typing fingers like honey flows from an extractor.

I wish I had the answers.

My brother in law, "B", who has autism, may have heard of this news when he came home from his twice a week day program yesterday.  Or, perhaps he found out when he turned his favorite news channel on later in the afternoon.

Either way, it is so hard to tell how much he understands about the San Bernardino shooting http://www.latimes.com/local/lanow/la-me-ln-san-bernardino-shooting-live-updates-htmlstory.htmlyesterday, where a husband and wife team shot and killed 14 people in a center serving those with developmental disabilities such as autism.  They left some 1400 rounds of ammunition and three pipe bombs attached to a remote control device at the scene.

A holiday party was in process at the time the shooting began.

The dead ranged in age from 26 to 60 and included a woman who had moved here from Iran after the Iranian revolution and a man who left six children behind.

This is what we know so far of the victims.

21 others were injured.

They left their six month old daughter with a relative before they embarked on their acts.  In their apartments, authorities discovered 12 more pipe bombs and more weapons.  In their getaway SUV authorities found about 1,600 more rounds of ammunition.

Actually, none of us here in the United States understand this.   We all have this in common with my brother in law.

Will he go to his program again tomorrow? (Today was an off day for him).  And, if so, what will he be thinking?


I just wish I had the magic words to make it all better for everyone in the world.  Because it just isn't us.  This is only the latest chapter of a story which none of us know the ending to yet.

A Question of Pants

Those of my readers who know I have a brother in law with a developmental disability called autism may be a little surprised that I haven't mentioned him in the past few months.

There's a reason.

This past week, we completed (let me rephrase - it's far from complete) a downsizing of my elderly mother in law's belongings and a move for her to be closer to us and to another family member and his wife.

My brother in law with autism, whom I call "B" on this blog, lives with my mother in law. That meant he moved, too.

He moved out of the only house he ever knew, a house he's lived in since early childhood.  It would be rough for anyone.  But he doesn't communicate much, and he keeps his thoughts to himself much of the time.

The success of the move (from his point of view) all boiled down to a pair of pants.


People with autism depend on routine.  It helps them feel secure and safe in a world that doesn't always make sense.  The world can be painful, and confusing, to an individual with autism.

"B" wants to know at what time everything will happen.  So many times I've had to tell him "B, I don't know."  What made it worse is when his mother needed surgery, experienced a complication and ended up hospitalized a lot longer than first expected, we couldn't predict the outcome. We couldn't give "B" the timeline he craved.  We couldn't say she would be released on (made up date) July 25 at exactly 1pm.   But he survived.

She still hasn't recovered completely.  But as for "B", that is not how he sees it.

He wants his routine, his safety.  He wants life to be predictable.  He doesn't want change.

Moving is not routine.  Moving is not predictable. His mother's health is not predictable. Moving is not predictable.

Towards the end, we were racing against a moving deadline and things got a bit hectic and disorganized.

 The moving van came first.  "B" and his mother came the next morning.
Crisis when they arrived.  The only pants we could locate for "B" were the pants he was wearing.

You could see the rising panic in his eyes.  He raised his voice.  He was yelling.  He wanted his pants.  And he wanted them now.

Several of us, including his mother, got him calmed. We promised family members would look for them.

We have a lot of boxes and containers stored at our house.  We looked. But we couldn't find the pants.  Perhaps they are in a mislabeled box.  We aren't going to open each and every box. Truthfully, we were tired....so very tired. 

Finally, on his own, he came up with a solution and a deadline.  If we didn't find the pants by today, one of his brothers would take him to the mall and buy him two pairs of pants.  If only all problems were solved that easily.

Well, yesterday, we found them.  Their container was mislabeled.  Crisis avoided.
So that's that....until the next time.

We have a lot to learn.

The End and the Beginning

A chapter has closed.  Another one is ready to be written.

I stare at the blank pages of today, ready to be written on.

My mother in law and developmentally disabled brother in law now (as of yesterday) live about two miles from us.  We, and my sister in law and her significant other, with help from several family members (you know who you are, and I thank you once again) survived the downsizing and moving process.  My mother in law and the brother in law I call "B" have arrived, and spent the first night in their new home last night.

I can not put myself into the heads of my mother in law or brother in law.  My brother in law has autism, and this process has been hard for him, perhaps harder than for any of us.  He just doesn't show it in the same way.

My mother in law is still recovering from heart valve replacement surgery.  She is trying to gain strength and health back.  It is a battle, at her age.

We all have a lot of adjusting to do. Mother in law and "B" must adjust to a new area, a new home, and apartment living.

We must adjust to them being two miles away and not 150.

It will be a "process".

Now the REAL work begins.  We all have to take it one day, maybe one hour, at a time.

Wish us all luck.  We are all going to need it.

Autism

Today starts the Blogging from A to Z Challenge, where thousands of bloggers are beginning a month long challenge to blog six days a week basing the blog on one letter of the alphabet. We blog for six days a week and Sundays are a "free" day.

Today, April 1, our blog posts are to about a topic beginning with "A". Tomorrow, "B", and so forth.

Blogging about A for Autism is a natural for me.

I am the proud sister in law of a man in his 50's with autism, a developmental disability that impacts the ability of a person to interact socially and communicate with others.  Autism is a spectrum disorder - some individuals can live lives with less help than others.  Many never live up to their full potential, although there is increasing hope for good jobs.

Sign in Charleston, South Carolina, March 2015

Autism has been in my life for almost forty-five years. It entered my life almost to the day I started to date my spouse.  It entered quietly in the form of his younger brother. 



The world my brother in law grew up in influenced a lot of his life, as it does for us all.  It also influenced the choices that were made for him - both in childhood and adulthood.  That world also shaped his personality and how he behaves now.  This was a world without early intervention, without special education programs.

Last year, my spouse gained guardianship of his brother.  That does not make my spouse the boss of my brother in law - no, far from it.  Rather, it makes him his brother's advocate.

For his entire life, "B" has lived with his mother in New York State.  My father in law passed away over 15 years ago. Since then, it's been just the two of them in a house that once was the home to an entire family.  "B"'s siblings, including my spouse, grew up and left.  B grew up and is still there.  He has lived in the same house for almost his entire life.  He has his own room, and his own bathroom.

People with autism do not cope well with change.

Some major changes are coming to "B"'s life as his mother ages.  We know he is aware of that on some level, but his thoughts are unknown to us.  Autism makes it so difficult for him to communicate with us. We suspect he has a rich inner life, but it will be forever locked away from those of us who love him.

Do you have an individual on the "spectrum" in your life?

How Many Stars are Too Many?

When stars of the entertainment field come together to raise funds for programs benefiting people with autism, the answer is "never too many".

As many of my readers know, I have a brother in law, in his 50's, who has a developmental disability called autism.  

When I write about him, I call him "B".

Autism is what is called a "spectrum" disorder.  Some people with autism are high functioning and can function well independently.  Some never talk or even achieve bladder control.  It's hard to say where my brother in law would have been on that spectrum because there was so little help for him available as he was growing up, but he is going to need help and support for the rest of his life.

And funds, a lot of funds, will be needed for programs for my brother in law, "B", and others like him.

Back in 2003, a comedy writer named Robert Smigel (who has a son - now 17 - with autism) put together a charity dinner to raise funds for autism.  He knew firsthand how parents had to struggle (and still have to struggle) to afford therapy and supports for their children with autism. Some even lose their houses.  Yes, today.  In 2015.

This charity dinner has now grown into an annual comedy event called the Night of Too Many Stars on a United States cable network devoted to comedy.

On Sunday night, the fifth Night of Too Many Stars was aired.  (I do need to warn my readers that some of the skits on the Night of website can be "edgy", although the video below is quite family friendly.  However, if you like good, sometimes edgy, comedy, search for the Night of Too Many Stars and be entertained.

I can hope that, one day, one of the programs this fundraiser raises funds for will, in turn, benefit my brother in law.

I think many of you will be inspired by this family friendly musical performance by "Weird Al" Yankovic, performing "Yoda" with Jodi DiPiazza a 13 year old girl with autism.  This is her second time performing - she also performed two years ago with Katy Perry.  Towards the end, Weird Al and Jodi are joined by other young people with autism.

Enjoy!

What A Man Did For His Son

Why must individuals with autism suffer with an unemployment rate of 90%?

Why, indeed. As the sister in law of a man in his 50's with autism, who has spent much of his working life in a sheltered workshop environment, I ask that question a lot.  At some point, my brother in law may be facing unemployment, with the closing of these workshops in New York State due to withdrawal of funding. 

A father and a brother decided to take matters into their own hands.

They caught the Rising Tide.

The son of a friend sent me a link on Facebook a couple of days ago - a link to a video about a car wash in Florida - a car wash called Rising Tide.  

This car wash employs mainly individuals with autism.  In other words, this venture came out of the love of a father for his son, and the love of a brother for his brother with autism.  The two brothers work there together at the business.

I hope that their "CanDo Business Ventures" doesn't mind if I quote from their website, as I feel their message is so important.  People with autism, in the correct environment, have a lot to contribute to our society.  And, why should my brother in law's disability be such that he ends up in a job where he, and his co workers, make less than the minimum wage?  How can someone ever strive towards independence if they are kept down by the inability to earn a living wage?


The owner of Rising Tide asks, on his website:

"Is someone in your family affected by Autism? Have you ever asked yourself the question,“What will my family member with autism do when I am no longer around to take care of them?” If you’re like us, this question has not only crossed your mind but is a concern that keeps you up at night. This simple fact is the inspiration behind CanDo Business Ventures.

John’s son, Tom’s younger brother, Andrew, has autism. ...Although a vibrant, light hearted young man, Andrew’s disability is a clear competitive disadvantage when it comes to securing gainful employment. We believe that Andrew and others like him have difficulty getting a job, not because people don’t want to help, but rather because businesses are simply not set up to accommodate the needs of people like Andrew."

 This is their philosophy:

" More than just a job, our plan is to have the businesses we build be a cornerstone to create supportive communities of individuals with autism where we teach them the skills needed to live independently and self advocate."

I wish them much success, because I believe this father and son duo can help to transform the world of employment for people like my brother in law.  And, we could sure use a good carwash with all of our salt-encrusted cars in New York State.

If you live anywhere near Parkland, Florida - why don't you catch the Rising Tide and give them a try? 

There is No Santa Claus (Autism Edition)

 Remembering this incident from 2011 still makes me smile.

Since I wrote this post, I found out the identity of this young man - and he does have a developmental disability called autism, something that he shares with my brother in law.

Sometimes, people with different points of view from most of us have something to teach - as did this young man on a December afternoon in 2011.

Enjoy this special post.  Do you have a special person in your life?

There's No Santa Claus - So Suck It Up!

As regular readers of my blog know, I have a brother in law with a developmental disability called autism. 

As a result of my involvement with him and a couple of other individuals with autism over the years, I tend to notice when I see or hear someone with an apparent developmental disability when I am out in public.

I should have posted this a week ago when it happened but there was so much going on that I mentally shelved it.  Hence, my last Holiday post of 2011-a few days late.

Last Thursday, I spent my lunchtime in an office building, the Security Mutual building, in downtown Binghamton, NY.  Every year, right before Christmas, they have noontime caroling in their lobby.  I've gone every year for about 5 years now, and it is a treat.

This year, I was standing in the lobby, listening to the caroling, when I became aware of this young man singing along with the carolers. I couldn't help it; he was singing loudly and right in my ear.  Soon, it occurred to me that his voice, while enthusiastic, was also....flat when he wasn't singing.  This can be a sign of autism (and some other conditions).  My brother in law speaks in a very "flat" voice.

As the carolers switched from one song to the next, the young man sang right along, until they sang "Santa Claus is Coming to Town".  In the middle of the song there was an instrumental section - and the young man decided to add some commentary.

"There is no Santa Claus!" he announced to the crowd.  "So suck it up!"

There were a couple of men, and a woman, standing right next to me and all of them were grinning.

It really was the highlight of the concert to me. (sorry, carolers and musicians.)  I don't know if the young man had autism, but he certainly knew how to speak his mind.

Tonight, I went to You Tube to see if there was video of this year's concert.  There wasn't, but there were several videos of the caroling from last year.   (The music selection tends to remain the same).  If you watch the video at the beginning of the post, you'll find the sound quality is terrible but you will get a little taste of the historic lobby and the love the carolers put into their singing.  I hope you enjoy it.

And while you are at it, remember:  there is no Santa Claus.  So suck it up!

"B" and The Rokerthon

Today, in the United States (for those of us who have cable TV) we may have the chance to watch history being made - live.


Al Roker, a TV weather presenter, is going to attempt to break a Guinness world record for most consecutive hours presenting a weather forecast. He plans to present for 34 straight hours.  The current confirmed record is 24 hours.  The unofficial record was set in September by a Norwegian woman who did some of the broadcast in her bathrobe.

This is being done, incidentally, to benefit a charity related to the USO, a serviceperson support organization with a long, distinguished history.  And fans will be able to interact with Al on social media during this weather report to beat all weather reports.

People are already calling it a "Rokerthon".  Let's just say that Al Roker is a showman.  He can be quite funny, and he can also skate along the edge of - shall we say - being a bit outrageous.  Or even risque.

These are the terms and conditions of this weather reporting marathon, which is already in progress (it started 10pm Eastern time last night).

Al gets a 5 minute break each hour. He can save them up (in other words, by not taking them) to have a longer break.

He can't talk about weather taking place more than seven days in the past.

He can't talk about weather predicted more than seven days into the future.

He can only talk about the weather. (Sorry, Al, no BBQ!)

And, there will be an official from the Guinness organization on site at all times to ensure that everything is the way it should be, so that the record can be official.

I was disappointed that the Weather Channel wasn't livecasting it on Al's own Weather Channel show this morning, Today.com will live stream all 34 hours. I am watching him right now - and you can send him some encouragement on Twitter, or drink some green tea and eat some jerky with him.

So what does this have to do with "B", my brother in law with autism?

Well, many people with autism have what is called a special interest - something they are obsessed about.  "B"'s special interest is the weather.  In fact, my spouse is an amateur metereologist, and has already shared how HE would do this Rokerthon if he was called to do it and not Al Roker.  But his love of weather is nothing like the love of weather that "B" has.

"B" isn't much of a conversationalist so he could never do his own "B"athon, but one of his topics of conversation, when he chooses to converse, is the weather.  Especially the weather in the city where the brother he loves lives.

I hope that Al Roker talks about Binghamton and Johnson City, and "B" gets to see it.

Knowing Al, he might even do it in a bathrobe.

Do you plan to watch any of the Rokerthon?

Do They Care About Others?

Today, I'd like to tell you a story - a true story.

Once upon a time...no, wait, this happened on Sunday.

My spouse and I were driving "B", my brother in law who has autism, to the supermarket.  He was out of lunchbags and we needed to pick up something for a quick lunch.

"B" isn't big on idle chatter.  If something is on his mind, he blurts it out, whether or not the moment is appropriate or not.  At least, it was an appropriate moment.

"What are you doing for C's birthday?", he asked.

We've had so many things on our minds recently.  And, with my mother in law's recent falls, it most probably was not on her mind.

But "B" knew better.  He only has one sister, "C", and that sister was going to celebrate a milestone birthday later this year.

And all of us had forgotten.

"What should we do, "B"? I asked him.  I was curious about how he would answer.

How about having it on ______, so we can also celebrate "A"'s birthday?, "B" responded.  The date in question was a milestone birthday for my son.  Trouble was, the date was several months in the future, way after my sister in law's birthday.  But "B" was keeping track of everyone's birthday, no doubt about that.

After a couple of more questions, I realized that "B" had it all planned.  The date.  The restaurant.  Even who should be invited.

I don't know why I should be surprised.  Why do we, as a society, underestimate (and undervalue) people with autism?  And, furthermore, why do we feel they don't love anyone?

They may not show love the ways we neurotypical (people without autism) folks think love should be shown.  But that love is there.  And, in the midst of us worrying about so many things, "B" was thinking of his sister first.

Now, for an announcement.

This is my 1800th post.  No giveaway.  Just a big thank you.
Thank you, dear readers for making my writing of this blog worthwhile.

A Place of Their Own?

I haven't blogged about "B", my brother in law with autism, for a while, but that doesn't mean my husband (his guardian) and I have forgotten him.  No, quite the contrary.

All his life, "B" has been cared for by his mother, as my regular blog readers know.   But time has marched on. He is in his 50's. She is in her 80's, with increasing physical issues.

Their lives have always been intertwined but one day, that will no longer be true.

A couple of years ago a relative, seeing them both sit on a park bench, remarked that they "looked like an old couple who had been together many years".

"B" lives in a split level house with his mother, some 150 miles from my spouse and I.  For much of that time, he has lived in a bedroom in a finished basement.  He has access to a TV set and his own bathroom.  He grew up in that house with his sibs. They left, he stayed with his parents.  Some 15 years ago, his father passed away.  Now, it is just he and his mother.

He depends on her, but increasingly, she depends on him.  And, as much as we would love my mother in law to live forever and be with "B" forever, we know that, one day, she will no longer be able to take care of "B".  And, I have a strong suspicion "B" knows this.  It is hard to communicate with him.

You have to ask the right questions.

I am not the greatest verbal communicator, either. 

Several years ago, my brother in law had an opportunity to move into a residence operated by the local ARC (an advocacy group for children and adults with developmental and intellectual disabilities).  He would have shared the residence with a number of other disabled individuals.  The residence has a good reputation in the community.  He would have a lot of opportunities to participate in various events, including going to ball games and shopping.  He would hopefully find activities he would enjoy.  Group homes are not a housing solution for all individuals in "B"'s situation, but it is an option.

As I've mentioned before, individuals with autism don't adapt well to change.  It is imperative that we find "B" a placement before something happens to my mother in law, to give him time to adjust.

My mother in law turned the placement down - twice.  These openings don't come too often.  Many openings come from - let's be blunt here - death of a resident.


It is difficult to find good housing situations for those with disabilities.  That is a fact, I suspect, everywhere in the United States.


We are investigating housing options up here, miles from where "B" and his mother live, for the future. My mother in law does not want "B" to live apart from her.  She wants him with her as long as possible.  This is her wish.  But, we are finding it difficult to find senior housing that has two bedrooms.  Usually, seniors move into one bedroom apartments.  There just aren't that many units available where we live - an area that is a lot cheaper than where they live.

(Seeing the lack of senior housing in this area makes us think twice about our future in this area, perhaps a post for another time).

My mother in law wants to age with grace with "B" at her side.

What does "B" want?  He wants to be with his brothers (there is another brother in our area besides my spouse).

He wants to be able to eat out.  He loves that activity. He loves to shop.

And he wants his own private room, and his own bathroom.  He wants quiet. He wants control over his life.  He wants his own dignity.

This much we know.

A guardian, incidentally, is not the boss over the person he or she is guardian of.  A guardian is supposed to be an advocate.  But we all know that you can't always get what you want, and "B" must learn this hard lesson, too.

Appropriate housing, once the time comes.  Appropriate, but "B" may not get everything he wants.

Wanting.  Having wishes granted.  If only it was that easy.

My spouse and I are finding out just how non-easy it is.

"To be continued".