Can Purple Be the Color of Hope?

I wish purple could be the color of hope.

Maybe there is hope, given the good news recently released about the health of beloved Jeopardy host Alex Trebek. 

He is responding well to treatment for his stage 4 pancreatic cancer.

But the news isn't all good.  Pancreatic cancer has struck again.  This time, it took a talented woman I did not know personally, but others I know (through blogging) knew and loved her.

In the past several months, pancreatic cancer has taken the mother of someone I know, and someone I knew of as a great advocate for eldercare issues in our community.  I got to meet her less than a year before her death. 

Alex Trebek gives much of the credit for his cancer shrinking to the millions of people who have been praying and thinking of him.  But prayer is not enough.  We must help ourselves.

Pancreatic cancer, and other "rare" cancers needs to be "brought up to speed".  This cancer needs to have some type of early detection, the way breast cancer and cervical cancer have.  It needs  publicity.  It needs marathons.  All cancers need funding.  It is true that pancreatic cancer is only about 3% of cancer diagnoses in our country.  But isn't it strange that, for its 3% rate, so many of us seem to know someone who has had it.

Yes, having had three relatives die from this cancer (my late aunt was the youngest), makes it personal.  While the survival rates for some cancers have (thankfully) increased, the rates for pancreatic cancer have not.

I do wish recovery for all patients with this dread cancer, whether or not they have extensive support systems.  And I am cautiously optimistic about Trebek, because I also know how quickly good news can turn to bad when it comes to cancer.

I seriously want him to return to Jeopardy for season 36 in September.

So, pretty please....

I want purple (the color symbolizing pancreatic cancer) to be the color of hope.  Besides hopes and prayers, what can we do to make it happen?

When We We All Win

There is a small part of Sunday's Super Bowl that won my heart.

"When everyone plays, we all win".

I learned about disabilities (indirectly) early in life.  My father suffered a traumatic brain injury during his service in World War II.  He was discharged, left to find his own way as best he could in a world that was hostile to those with disabilities.  He did make his way, but help would have made his life a lot easier.

My autistic brother in law was also born into that same world of the 40's and 50's, and, through people I've met because of him, I've learned that what many with disabilities are looking for is simply the same chances that everyone is supposed to have in our country.  They want friends.  They want to participate in the activities of their peers, including playing of games. They want a job that pays enough for them to live independently.

Of course, a game controller can't bring these children a total level playing field in life.  But it's a start.

In today's world, the life of those with disabilities can still be harsh.  So anything that "levels the playing field"should be applauded.

I wish the best to the children and their families featured in this video.

Caregivers

In 2015, I blogged about the fact that for the first time in many, many years, we would not be having Christmas with relatives in Yonkers, New York.  Earlier that 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.  And, as my readers know, my mother in law passed away the day after Thanksgiving.

One of the relatives down there will be 107 years old early next year.  She lived with her son, who took care of her.

Yesterday, the son, who was in his early 70's, died suddenly.  We had last seen him at my mother in law's funeral.

Now, he's gone, too.


And at the funeral home, I spoke to one of my husband's cousins, who had cared for her recently deceased husband (dementia) for years, and wrecked her health in the process.

I know so many people who have lost loved ones in the last two or three weeks.  A co worker lost her father. An acquaintance of many years lost his elderly aunt (he helped take care of her), while trying to raise three young children as a single father.

The path of a caregiver is a hard one.  The caregiver doesn't take care of him or herself, sometimes with tragic results.

Recently, our office of aging reached out to me because I had been unable to attend a "focus group" on what caregivers in our community need.  I really need to answer that email.  But, instead of answering their questions directly, perhaps I should just describe what is happening around me.

It scares me, thinking about who else might not survive this winter.

The Blog Post I Wanted to Write

Election Day is next Tuesday.  Today, I ask you to consider this:

Pipe bombs. A hate crime in a Kroger [a large United States supermarket chain] parking lot - a white supremacist (allegedly) killed two black men at random after he couldn't get into a black church.  Another hate crime in Pittsburgh, Pennsylvania - this time, the toll was 11 innocent people, including a 97 year old woman, a number of people in their 80's, a doctor who ran towards the shooting trying to help, and a mentally disabled member of the congregation.  All they wanted to do was pray, but a man filled with hate took their lives instead. 

As I asked yesterday, must we rinse and repeat?  Friends, we have the power to stop the cycle.

There is only one way we can react to this, because we have this freedom, and this responsibility, in our United States.

WE MUST VOTE NEXT TUESDAY, each and every one of us who possibly can.

Please, take a minute and examine the people running in your local races, including mayors and governors. Don't vote blindly. Do they campaign on glorification of violence?  Do they promote division in your community?  Do they use fear as a weapon to get them to vote for them? If so, I implore you not to vote for them.

It's hard.  I'm shy and I know it's hard for me to speak out.  But fear can not stop us, not this time, or we will live in fear for the rest of our lives.

Of course, we must also live our lives.

So, let's switch topics for a minute

Halloween (for those who take part) is tomorrow. Now come The Holidays, the cluster of Halloween/Thanksgiving/Christmas and other holidays inbetween.

Let's take a deep breath and enjoy our season for a minute, because we must take a break from the events of the past few days.  Deep breath.

Earlier in October, I took these pictures of decorated pumpkins at Frog Pond Farms near Bainbridge, New York.

Some for fun, some scary.

And mums.  There are always the mums.

At another farm stand, Russell Farms in Vestal, a display also from earlier in the month.

By tomorrow, they will all be a memory, until they reopen in April or May.

Now, consider this.  Do we want to have this same opportunity next year, to enjoy the bounty of the year, but this time without fear?  Do we want to face down the fear that is taking so many of us over?  Will we let those who think it's now open season on hate take us over?  Because they will take over if we let them.  History is littered with countries where they took over.

Don't let our country be added to that list.  Don't let the founders of our country down.  We've had times of crisis before in our country.  We can get through these troubles.

The power is in your voting hand.  Let's use it next Tuesday. 

Day 30 of the Ultimate Blog Challenge #blogboost

Civil War Sunday -Let's Have Tea

After a nearly two year hiatus, I am starting up, at least for the remainder of February, and all of March, my United States Civil War Sunday feature.   Although I am not a historian, I have always been interested in history.  After all, history is the story of all of us, past and present - not just events, but people.

And who doesn't like a good story about a great person?

I firmly believe that if we don't remember the lessons of history, we are doomed to repeat the same mistakes that past generations did.

A man by the name of Frederick Douglass died on February 20, 1895.  Our country could use him today.

On February 1, someone in high office said something that seemed to imply that Douglass was still alive.  His descendants decided to turn that into a teachable moment. 

It is my pleasure to introduce you, my reader (knowing that some of you are not from the United States) to this most remarkable man who had many ties with my native New York State.

Frederick Douglass never knew his exact birth date.  He was born into slavery in Maryland sometime during February of 1818. His original name was Frederick Augustus Washington Bailey.  He barely knew his mother, whom he was separated from at an early age (not uncommon with slaves in that area) and was raised by his grandmother. His birth mother died when Douglass was 10.

At around the age of 12, the young Douglass was hired out to a man living in Baltimore, Hugh Auld, brother of Douglass's owner Thomas Auld. Hugh Auld and his wife were not experienced slave keepers, which may explain what happened next.

Hugh Auld's wife started to teach Douglass the alphabet.  I can not emphasize here the importance of this act - slaves were not permitted literacy, and in many places, teaching a slave to read or write was a crime.  Any slave, in turn, who was literate had to hide that fact or risk heavy punishment or even death.

Imagine that your love of reading must be kept secret, as you have no right to be literate.

Soon enough, Hugh Auld convinced his wife that teaching Douglass was a mistake.  But it was too late.  In secret, Douglass taught himself to read and write, using various resources, including a school primer owned by Hugh Auld's son, and the Bible.  Later, as a teenager, he was hired out to another man and started an underground slave school for the other neighborhood slaves.  He was caught and brutally punished by being hired out to a known "slave breaker".  Almost psychologically broken, he still managed to survive the experience.

Eventually, in 1838, Douglass was able to escape to the free state of Pennsylvania and then onward to free New York City.  He married (he and his first wife were together for 44 years) and they settled in Massachusetts, another free state.

Douglass eventually took the last name of "Douglass" from a poem, The Lady of the Lake, by Walter Scott.  While still living in Massachusetts, he joined the abolitionist movement - a movement to abolish slavery.  By the early 1840's, Douglass was traveling frequently and giving the most eloquent speeches many had ever heard.

Some people didn't even believe he had ever been a slave, so Douglass decided to write the first of several autobiographies to educate the public about his origins and early life story.  This book, Narrative of the Life of Frederick Douglass, An American Slave (published in 1845), is in the public domain here and in most countries.  If you look online, and it is legal, you will find PDFs of it on many websites.  It is about 108 pages.

Keep in mind that Douglass, at this point, is still an escaped slave.  It was quite possible his owner, Thomas Auld, could hire people to capture him and bring him back to slavery.  After all, he was Auld's property.  So, also in 1845, just as the Irish Potato Famine was starting, Douglass traveled to Ireland and Britain, and spent the next two years there.  There are several historical plaques in Britain and Ireland commemorating that visit.  More importantly, British supporters raised enough money  and Douglass was able to purchase his freedom from Thomas Auld.

Returning to the United States in 1845, he began his association with upstate New York, particularly the upstate New York cities of Seneca Falls and Rochester. If you are interested in learning more about Douglass, many of his other writings are online, free to read.  Or, you can watch a 44 minute "living history" depiction of Douglass produced by a Virginia TV station.

During the Civil War (1861-1865), three of Douglass's sons served in the military.  One became a First Sargent and anther a Sargent-Major.  The third was a recruiter. 

Douglass fought for many causes, including improving the lot of the nation's former slaves (they were all freed after the Civil War), education, and women's right to vote.  He used words, not violence, to advance the causes he believed in.  I must also point out that his beliefs were sometimes complicated, and contradictory.

Douglass believed in the young art of photography, and was the most photographed man, it is said, of the 19th century.

Politically, Douglass was the first African American to be nominated for Vice-President (he did not support this, and did not campaign) and the first African American man to receive a vote for President.

In addition to his work in the abolitionist movement, Douglass also did much work in the women's suffrage movement.  If you are a woman in the United States, you owe much to Frederick Douglass.

Here is another part of this amazing life story: In 1877, knowing his former owner Thomas Auld was dying, Frederick Douglass traveled to Auld's side and they reconciled.  I don't know if I could ever have done that if I had been a former slave.  Could you have?

Which brings me to these statues.

Douglass lived for about 25 years in Rochester, New York, also the home of suffragist Susan B. Anthony.  Near Anthony's home is a small park, and there, you will find this statue, called "Let's Have Tea".  Here, Anthony and Douglass's statues...well, they have tea.  A black former slave and a white school teacher having tea as equals?  That, in itself, would have been a revolutionary act.

Douglass died on February 20, 1895, in Washington, DC, shortly after visiting a meeting of the National Council of Women, and receiving the last standing ovation of his life.

Douglass is buried in Rochester, New York.  Here is his grave in Mt. Hope Cemetery.

Mural of the Douglass-Anthony Bridge, Trader Joes, Pittsford, New York

Also in Rochester is the Frederick Douglass-Susan B. Anthony Bridge.

Although our nation's leader may have incorrectly implied that Douglass was still alive, he was right in one respect.  The vision of Frederick Douglass is alive.  His courage in learning to read and escaping slavery still inspires us.  His supporting the rights of minorities and the rights of women continue to be carried forward by those who still believe in his vision. He taught that protest must always be peaceful, and that we must never give up when protesting for a just cause.

Next year will mark the 200th anniversary of Douglass's unknown birthday - and we can even hope that our President will wholeheartedly join in.

Come to think of it - yes, in a way, maybe Frederick Douglass is still alive - in all of us.

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.

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?

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".

How a Journey of 1000 Steps Begins - Part 2

On Tuesday, I started a series on how our journey to advocate for my spouse's developmentally disabled brother in law started.  As I blogged about, my father in law died suddenly, one Christmas night in the 1990's. 

After the viewings, and the funeral, the paperwork started.

"B"(as I call my brother in law in this blog) helped my mother in law and me make the phone calls to various agencies, to my father in law's former employer (he had just retired), to Social Security, and to the ARC chapter who ran the sheltered workshop where "B" worked.

The ARC, in the "old days" had another name (so unacceptable today):  "The Association of Retarded Children". Yes, things were so different back when "B" was born, in the 1950's.  Or, even, in the 1990's when our advocacy journey began.

"B"'s association with ARC dates, I believe, from his late teens.  A long, long time.

"B" didn't make the calls.  I made a lot of them, but if we needed a statistic (such as the date he retired, the date he turned 65, and so forth) "B" was right there with the information.

That is one of his talents.  Not all people with autism have that kind of talent, but "B" does.  He can, for example, remember the weather (a special interest of his) for almost every day of his conscious life.  He also has an internal calendar with dates of almost everything that has ever happened to him.

You'll recall that I blogged, back in June, about "B" insisting that the family cat was responsible for his father's death.  In talking to the ARC, I asked if there was any kind of help they could provide in helping "B" adjust to the death of his father. (Incidentally, in case you are wondering - yes, people with autism do process death differently than many people without autism.  Perhaps this should be the subject of a future post.)

The answer to whether the ARC could provide help was "No."  The reason why shocked me-it was so unexpected.  And it started us on our journey of advocacy, which came to a milestone earlier this month, as my spouse was granted guardianship of "B".

So long ago, my father in law had insisted, every time we asked about "B"'s future, that "everything was taken care of".


It turned out that nothing was taken care of.  There was one important detail he had neglected t take care of. And that was why "B" couldn't get this, or any other service besides a sheltered workshop, from ARC.

"To be continued".  (Yes-there will be a third post.)

My readers, thank you for coming to my blog!  For now, I may have to cut back my blogging for August and September  I still plan to blog daily, but posts may be reruns, or photo posts.
I still will have good content for you, but a family situation is taking a lot of my mental energy right now.  I hope you will understand.

And know that I appreciate you, my readers, every one.  Thank you for reading my story - and thank you for your comments.

See you in August!

How A Journey of 1000 Steps Begins - Part 1

Our journey of 1000 steps (feeling more like 1000 miles) with my developmentally disabled brother in law, "B", deserves two more blog posts this month.  One will be today, and the other on Thursday.

For those who followed my story last month, my spouse has a developmentally disabled younger brother, "B".  When I did my several autism-related blog posts last month, I blogged that my spouse had applied to become the guardian of his brother.

This month, the guardianship (with some stipulations) was granted.  My spouse has a steep learning curve ahead of him, as he learns his duties and responsibilities.

Today and tomorrow, I want to blog about how this journey began.  It didn't begin with the application for the guardianship.  In fact, it started years ago. I've known "B" for over forty years.  We've spent time with him, taken him shopping (one of his favorite activities), done other things with him.

What I wanted to blog about was how we got involved in advocating for him.

My father in law was a good man, but he would always brush us aside when we would make inquiries as to if "B"'s future had been planned.  I think, in his mind, he had done what he could for "B".

While my father in law was alive, he always reassured his other children that "everything was taken care of" pertaining to "B".

It hadn't been.


My father in law died suddenly, one Christmas night in the 1990's.  His death was discovered the following morning.

Earlier that year, "B" had a milestone birthday party.  At one point, someone noticed that my mother in law was the only attendee over a certain age who was not a widow, and made a remark.  How could any of us know that, some months later, my mother in law would suddenly enter the ranks of widowhood?

We were visiting, as it happens, that Christmas-after morning when my mother in law awoke to find she was a widow. 

Needless to say, there was the shock, and suddenly having to make funeral arrangements.  My son was then in elementary school, and there as the impact on him, too.

At the funeral home, and the funeral, many people came up to us to tell stories of good things my father in law had done for them.  It was a great comfort.  But then, the funeral was over, and we were all on our own, left to carry on.

It was time to start planning for "B"'s future, even as we coped with the aftermath of my father in law's death.  Thursday, what happened next.

And The Decision Was....

The big day arrived.  My spouse's petition to gain guardianship of "B", my 50-something brother in law who is developmentally disabled, was heard in Surrogate Court in the New York State county where he lives on Tuesday.

My spouse, his mother (who, although never having been appointed guardian, had cared for "B"'s affairs all her life - except now she's in her mid 80's and has increasing mobility, health, and other issues), my sister in law, were present.  Who wasn't? "B".

He wanted to go to work. 

This, again, applies only in New York State, and guardianship in your state (or country) may differ.  Here, what we filed for was for something called an Article 17A guardianship.  It was up to us to prove that "B" needed this guardianship, which we did through material submitted with the petition. 

The law itself (noting I am not a lawyer, only a layperson) is quite an eyeful to read and wade through.  We needed to prove through evidence provided by people qualified to give this that "B" had a developmental disability called autism and that his disability began before age 22. We needed to show that "B" could not make his own "autonomous" decisions.

In New York, it is important to note, a guardian is an advocate for the disabled person. To use the terminology my then teen son would have used some years ago, "it doesn't make you the boss of him."

impairment of general intellectual functioning or adaptive behavior so that such person is incapable of managing himself or herself, and/or his or her affairs by reason of such developmental disability - See more at: http://codes.lp.findlaw.com/nycode/SCP/17-A/1750-a#sthash.MZT3FObT.dpuf

There is nothing like being in court for feeling small and intimidated.  That's how I felt, anyway, as we filed into the courtroom. 

The judge asked us all to sit upfront, and asked each of us to identify ourselves.


The Surrogate Court had appointed someone called a guardian ad litem for "B", who represented "B" at the hearing That local attorney had met with both my mother in law and "B"earlier this year. He told the judge he had personally spoken to "B" and thought the petition should be granted. Our attorney attended the hearing by phone, which I was most grateful for the judge permitting, because it would have been costly to have an attorney there in person.

The judge was concerned with my mother in law's renunciation of her rights, although she never filed for formal guardianship ever, because there was missing paperwork she had needed to file. I suspect it came when she was undergoing her cancer surgeries earlier this year and it just got lost in the shuffle. So he asked her if she was indeed wiling to do this, and her "yes" was strong.  The judge asked for the completed paperwork for filing.

The judge asked a few other questions, including if we had any questions.  I think all of us were afraid to ask anything, in fear perhaps that saying the wrong thing might jeopardize the petition.

Well....the guardianship should be finalized in about two weeks.  (Big "whew")

Once this is granted, my spouse can make care decisions, financial decisions, and other decisions on behalf of "B".

Although he didn't realize it on Tuesday,  "B" now has protections under the law if something happens to his mother, as I've blogged about previously.

I know, for my spouse, this is only the beginning, and, of course, we have no idea what the future has in store for us - or for "B".

But now, although he isn't fully aware of it, he (we hope) "B" has a more secure future.

A Day a Year in the Making

On and off this month, I've been blogging about my brother in law, "B",who has autism.  He is in his 50's.  I had intended to blog part of this month about our experiences (my spouse and I) trying to advocate for him, with the possibility of one day writing an e-book to help others in a similar situation..  I ended up blogging more about him personally, so you, my readers, could get to know him a little better.

Now, it's time to return to describing our advocacy efforts.  Some of what follows is a repeat of a blog post from May - May of 2013.  It's taken all of this time to get to where we are today. 

For all his life, "B" has been cared for by his mother.  It's time for the big step of "what comes after his Mom".  She is in her mid-80's, and eventually, will no longer be able to care for him.  Or, worse-the inevitable will happen and she will leave this Earth forever.   Last November, she was diagnosed with cancer. It was caught early, and was considered curable with the proper treatment.  

She received that treatment earlier this year, and the prognosis is good.  Right now, she is in remission.  This could have had such a different outcome.  And, that is what we must think about now.

The fact is: "B" does not have a guardian.

If, heaven forbid, she died tomorrow, this is the future the State of New York has prepared for my brother in law and other disabled individuals without a guardian, according to a knowledgeable person we consulted last year. (Note, this is not legal advise, and this may not happen in states other than New York.  I am not a law professional.)  Because, right now, "B" doesn't have a guardian, the following would happen:
 
1. He becomes a ward of New York State;
2.  He can't stay where he lives (if his Mom died, he's the only other person living in the house) because he would be alone, and the state will not allow that.  He is deemed to need 24 hour supervision, and the state can't provide 24 hour supervision where he lives now  So housing must be found for him;
3. the court appoints an "advocate" for him, and it is potluck - could be anyone - maybe a person that doesn't know my brother in law at all;
4. Then the State finds emergency housing for him - "first available bed" which could be something not at all appropriate for his disability, but too bad.
And, by refusing the placement, it may be years before another opportunity comes up.
  We found we couldn't help him without someone becoming his guardian. 
 
People with autism, in the best circumstances, find it difficult to cope with any type of change.  And this, to use a cliche, would be the mother (no pun intended) of all changes.
  Years ago, my mother in law told us last year, she and her husband (dead some 15 years now) were advised to apply for guardianship.  Her husband elected to ignore this advice.  After he died, she saw a lawyer and certain other documents were drawn up but again, guardianship never happened. 
 
The blessing is, my mother in law is still alive.   "B" is blessed in that he has a family who cares for him. We are finding that a lot of older men and women in that situation are all alone. No one cares.
 
So, last summer, my spouse and "B"'s other brother saw a lawyer and started the process for my spouse applying for guardianship for his brother.  In New York, the process is not easy, and it took a long time to get all the pieces together.  It's been an adventure, and today, our petition is finally going to be heard by a judge in Surrogate Court, in the county where "B" and my mother in law reside.  This is all with my mother in law's blessing.  In fact, spouse could not have done it without her blessing.

My spouse's next oldest brother will be the guardian if anything happens to my spouse where he can no longer serve as guardian.  Then, one other sibling (the only one younger than "B") will take over if anything happens to both of them.  In this way, my brother in law will have someone helping him throughout his life.  Or, at least, that's the hope.

Let's hope the court hearing goes well today.  Today has literally been a year in the making.  I hope to blog more about the exact process we went through in the near future, and describe whatever happens today.

Tomorrow, my last Spring Things as we prepare further for the future.  Thursday, I will have another gardening post.  Friday, hopefully, I will be able to report good news.

No Cats Were Harmed in the Posting of This Post

In Tuesday's blog post, I blogged about how my father in law died suddenly, in his sleep, on Christmas night, 1998. 

"B", my 50 something brother in law who has autism, blamed the family cat, Pepe Le Pew.

Pepe - who looked something like the cartoon cat many of us remember from our childhoods, if you are of a "certain age"- never really interacted with "B". Nor did "B" interact with Pepe, at least at anytime I ever remember seeing. My spouse doesn't remember any interactions, either.

In fact, while my spouse (who is several years older than "B") was growing up, he owned several cats.  "B" never showed any interest in those cats, either.  His mother and father did not keep other pets, so we'll never know if "B" would have made a dog his own, or a bird, or any other animal.

Is this usual for someone with autism?

The short answer is "there is an entire spectrum of differences between people with autism".  But one thing is for certain, in my experience:  the myth that a person with autism can not love, is just that - a myth.  (Something else to blog about, one day.)  They just find it difficult to show it in ways we without autism understand.

The longer answer is:  Some people with autism love animals and interact with them more easily than with people.

This could be for a number of reasons.  Animals do not judge our social behavior.  For a person with autism, the social behavior of other humans is a mystery, many times a painful mystery as he or she is rejected by others for reasons not easily understood.  The love of an animal is unconditional.

And, perhaps, the social behavior of a solitary cat or dog is something that a person with autism can pick up on.

The relationship between certain individuals and people with autism can be legendary, such as the famous professor of animal science who has autism, Temple Grandin.  Ms. Grandin, in fact, is an advocate for humane animal slaughter for those animals who are raised for food.  She even addresses the issue of humane animal slaughter in the context of two major world religions.

She writes extensively on animal welfare. 

And, those are not the writing of someone who does not care and can not love.

But, let us return to the situation, after my father in law died, where "B" blamed the family cat, Pepe.

We still don't know why "B" blamed Pepe.  I don't think we'll ever know. Perhaps this was his way of communicating something he saw that night.  An unusual behavior my spouse remembers from his childhood, watching "B" develop in a way unlike his other brother, was that "B" would blame his hand for misbehavior.  "The hand did it", he would insist.

Perhaps "B" saw Pepe trying to enter the bedroom the night my father in law died. (they probably had the door closed that night as we were there.)  Perhaps "B" (who loves to read about scientific topics) had read about folk beliefs that cats could smother young babies.  Perhaps he thought the cat had smothered his father. I can only speculate. 

It's important to note that whatever "B" was trying to communicate, he wasn't violent.  In fact, I have never, ever, seen "B" engage in violent behavior towards others.

He never tried to harm the cat.  And, I am touched by my readers who worried for the cat's fate. 

So, dear readers, let me assure you the cat in question lived to a ripe old age, unharmed (and probably unloved) by "B". Pepe died of natural causes when he was around 16 years old. In his older years, Pepe didn't stay at home much.  He took up with another neighborhood cat, and (with the owner's blessings) spent most of his indoor time with the other cat's owner.

I'm happy Pepe found happiness.  Sometimes, I wonder if "B" is happy with his present life.

And, one more thing to close this story.

My mother in law never replaced Pepe with another cat. To this day, they remain without a pet.

Rolling on the Floor Not Laughing

I've realized that I've started to take you, my faithful blog readers, on a journey through an experience called "autism" but I haven't talked about one of the most important thing we must remember as we start our journey.

Dear readers, it is all about support and safety.

I asked my spouse when he first realized that his younger brother, "B", was not developing the same way as his next younger brother.

He was about eight years old, and "B" was three.

"B" was not talking. He would throw tantrums. 

Not only that, but he never crawled.

Instead of crawling, "B" rolled on the floor. Everyone remarked about it, but no one seemed to know the significance.

 Now, this would be an indicator that something was wrong, but not back then.

When my mother in law was sure that something just wasn't right, she encountered pediatricians who had not been trained in developmental issues.  This was the early 1960's.  So she knew something was wrong but just didn't know what to do about it.

Why didn't "B" talk at three?  Well, according to his doctor, it was his mother's fault.  She had spoiled him, letting "B" depend on his two older brothers to communicate on his behalf. Did she know there were other mothers and fathers out there in the same situation?  I'm not sure.

There was no therapy the schools could offer. In fact, his right to a free, appropriate public education was not yet guaranteed by law.

Basically, my mother in law made up whatever she did in raising "B" as she went along, as did other mothers of children with what we know today as autism.

Now, the torch is being passed to us, the siblings and spouses.  And, in many ways, we struggle. I thank you for coming along and promise I will be sharing some good information with you during June.

My mother in law, although she didn't know it then, was not alone in her journey, just like we aren't alone in ours.  For a minute, I want to blog about the mother of perhaps the most famous person with autism today, Temple Grandin.  Her mother, Eustacia Cutler, now travels the world, lecturing on various aspects of autism.

This is what Eustacia Cutler has to say, quoting from her foundation website:

"A strong family is the linchpin that keeps a spectrum person from slipping off course. Family care for that person can be a lifetime task—in early years for parents, in later years for siblings. It stands to reason, therefore, that support for all family members in the early years, will build a strong family able to cope with whatever comes—a more humane and less costly solution than 70 years of institutional support.

As yet no autism organization has given full focus to the disorienting impact of autism on all members of the family.

While some families have the strength of an extended family or community support group, and enough money to buffer the non-stop task, most do not."

Families bend, if not break, under the strain.  There is, according to Ms Cutler, hidden domestic abuse.  There is a debate over whether families with a child who has autism divorce at a higher rate than other families. Life can be hard. 

I guess I am still brooding over the incident I blogged about yesterday, where a young blogger caring for her older sister (parents dead) wrote one post and felt she needed to take the blog down, after some less than appropriate comments.

I wanted to thank everyone who commented on my post yesterday.  I will thank you all individually, too. You, my readers, are awesome.

And in the meantime, those who have family members, the sibs the in laws, the caring friends, need to have safe places to vent, to celebrate, to inform.  There are such places.  I will blog about them later this month.   And yes, we do laugh. We do have good days and good times.  But, overall, it can be so hard.  Thank YOU for your support!

I will continue this journey through autism on Tuesday.

The Only Living Cardiologist in New York

No one said it would be fun.

Wednesday, my mother in law, accompanied by one of her sons and her daughter, arrived at Beth Israel hospital in Manhattan to have a radioactive device implanted to treat her cancer.  She has to have it in for a week and will need to return Wednesday to have the device removed.

My mother in law is in her 80's, and has some health issues.  Normally, this surgery is done on an outpatient basis but due to a heart related issue, the hospital decided to keep her overnight for observation. Overall, the surgery was successful.

Meanwhile, my spouse and I are some 150 miles away.

Thursday, my mother in law was able to get out of bed, and the surgeon cleared her for discharge.  But then, someone made the decision that a cardiologist needed to examine her and give a release before the hospital would permit discharge.  I don't know "who" that someone was.  It sounded like a last minute decision.

To make a very long story short, it took the cardiologist some seven hours to get there while my mother in law and her family waited and waited and waited.  It turns out the cardiologist, who practices in Brooklyn, had to finish her regular office hours - ending around 4pm- and then drive from Brooklyn to Manhattan (this is no quick feat, in New York City rush hour traffic.) To make a long story short, the cardiologist arrived after 5 (with my family members having waited since 10am), examined my mother in law, gave her blessing, and some 20 minutes later, my mother in law was on her way home.

She arrived in good time, in good spirits, and not in any pain, all of which we are grateful for.  But we ask the question:  was this really necessary?  Was this cardiologist the only living one in New York?


We (me, my spouse, and I guess everyone else) really need to learn how to advocate and to make sure something like this does not happen next week when we have Part 2 of the surgery.

The oncologists office said they really couldn't control what the hospital does.  The hospital told my sister in law that the oncologist's office needed to deal with the issue.  So we all must ask:  WHO'S IN CHARGE HERE?

Several hours into this ordeal, we got involved, not knowing what the hold up was but wanting to help, calling the oncologist's office to see if they could help, texting and calling the brother and sister at the hospital, and the brother's wife finally calling the hospital's patient representative (the oncologist's office gave me the number, once I thought of asking if they had a department like that).  My husband's sister, in the meantime, had been working with a nurse on the floor.

So, in talking to people since this happened, I was told by several people that my sister in law and brother in law could have signed my mother in law out rather than wait.

I've now also found the website for the Beth Israel Patient Representative office.   and I will review the Patient Bill of Rights.  Maybe they can also help with the fact that we've been trying to reach the hospital social worker, but he does not seem to return phone calls.

What would be the best way to be proactive and make sure this doesn't happen again when the surgical removal takes place next week? What questions should we ask? What resources can we take advantage of to help us with our advocacy?

So we already know more than we did yesterday but need to know still more to be effective.

I appreciate your advice!

Worries for the Future - Part 4

My regular readers know I have a brother in law, in his 50's, with a developmental disability called autism.  My spouse, who is the oldest of four siblings (including the developmentally disabled brother) is attempting to get legal guardianship of his brother.  This is not an easy process in New York State, where we both live.


Back in December, I updated you as follows:

"As regular readers of this blog know, I have a brother in law, in his 50's, who is developmentally disabled with a condition called autism.

Autism is a spectrum disorder - some individuals can live lives with less help than others.  Many never live up to their full potential.

For several months, my spouse, his oldest brother, has been trying to gain guardianship of his brother.   I promised you a "to be continued" and here it is.

We had had difficulties, but today, we received the last piece of paperwork needed to start the guardianship petition. Tomorrow, we drop it off to the lawyer.  Then, we'll just have to see what happens next.  It's not necessarily a quick process.  Meanwhile, time ticks away - my mother in law (and we) grow older every day."  (more of the post can be read here).


This is where we are now.


We are still in the midst of giving the lawyer information so she can prepare the petition for guardianship.  Very little has come easy - getting the two required medical signoffs, for example, took a lot longer than expected.  Some of the information New York wants about the proposed guardian and the alternate/standby guardians (the other non-disabled sibs) make us wonder - Why?

Now, however, time is becoming of the essence.

The brother has always lived with his mother, my mother in law.  She is now in her mid 80's, and was recently diagnosed with cancer.  Her cancer was caught early, and her prognosis is good, but first, she will have to undergo some treatment later in January.

Thankfully, she is a strong willed individual and a fighter, and is deeply dedicated to her children.

All the sibs have been plunged (my spouse and I, for the first time) into the bewildering and not so wonderful world of caring for someone with cancer - the doctors, the planning of treatment, the arranging of transportation, the phone calls to give support, the questions, the more questions,  the taking off of work to help care for our loved one, and, (eventually, I expect) the "how is she going to pay for all this?" 

And, in the middle of all this - my brother in law.

How much does he understand? Is he scared? Does he worry about his future? I suspect he knows a lot more than we think, but he can't communicate it.

So, we walk our daily tightrope, trying not to look down, putting one foot in front of the other, and trusting that one day we will reach the other side, and be able to jump off.

Have you been through anything like this?  If so I would love to read your comments.

Worries for the Future Part 3

As regular readers of this blog know, I have a brother in law, in his 50's, who is developmentally disabled with a condition called autism.

Autism is a spectrum disorder - some individuals can live lives with less help than others.  Many never live up to their full potential.

For several months, my spouse, his oldest brother, has been trying to gain guardianship of his brother.   I promised you a "to be continued" and here it is.

We had had difficulties, but today, we received the last piece of paperwork needed to start the guardianship petition. Tomorrow, we drop it off to the lawyer.  Then, we'll just have to see what happens next.  It's not necessarily a quick process.  Meanwhile, time ticks away - my mother in law (and we) grow older every day.

Here's my last post, from September.

Worries for the Future Part 2

In an earlier post back in August, I posted about needing to plan for the future of my brother in law, who is developmentally disabled with a condition called autism.  

We live in New York State, and what you are about to read may not apply in your state/country.  I want to share this as a cautionary tale, not as a "how-to" primer.

We've (we and other siblings/spouses) been involved in other advocacy for him, but now the time for this big step of "what comes after his Mom" has come.  She is in her mid 80's, and eventually, will no longer be able to care for him.  Or, worse-the inevitable will happen and she will leave this Earth forever.
  
If, heaven forbid, she died tomorrow, this is the future the State of New York has prepared for my  brother in law and other disabled individuals without a guardian, according to a knowledgeable person we consulted.
 
1. He becomes a ward of New York State;
2.  He can't stay where he lives (if his Mom died, he's the only other person living in the house) because he would be alone, and the state will not allow that.  He is deemed to need 24 hour supervision, and the state can't provide 24 hour supervision where he lives now  So housing must be found for him;
3. the court appoints an "advocate" for him, and it is potluck - could be anyone - maybe a person that doesn't know my brother in law at all;
4. Then the State finds emergency housing for him - "first available bed" which could be something not at all appropriate for his disability, but too bad.
And, by refusing the placement, it may be years before another opportunity comes up.

We can't help him without one of us becoming his guardian.

People with autism, in the best circumstances, find it difficult to cope with any type of change.  And this, to use a cliche, would be the mother (no pun intended) of all changes.

Years ago, my mother in law told us recently when we discussed my spouse applying for guardianship, her husband (dead some 15 years now) and her were advised to apply for guardianship.  Her husband elected to ignore this advice.  After he died, she saw a lawyer and certain other documents were drawn up but again, guardianship never happened.

The blessing is, my mother in law is still alive.  She is trying to age with some kind of grace, but refusing to let go of her disabled son.   This man is blessed in that he has a family who cares for him. We are finding that a lot of older men and women in that situation are all alone. No one cares.

So, my spouse is seeking guardianship for his brother.  It's been an adventure, which I will write about more as time permits.

"To be continued".

A Future in Fiction?

Last year, I wrote a fictional memoir.  It was a "what if?" piece.  The fictional "me" writing the memoir had not made a career change I made in my mid-40's.  Her mother was still alive (my mother died when I was 12).  The fictional me was not on vacation in Maine when a flood hit her neighborhood in September of 2011, and went through the flood instead of experiencing it from hours away, as I did.  It was a healing process.  It helped me a lot.  It served its purpose, and I am increasingly thinking that I should dust it off and start the editing process.

After trying to write my "real" memoir,  I find myself thinking about that work in progress more and more.  One of the characters, my fictional daughter (in real life I have a son), has been pleading with me, in my mind, to let her out and let her live.  How can I not resist?

I had been afraid of fiction, but in a way, fiction will now seem liberating.  I don't have to worry about fact verification - although I have to worry about all those aspects of fiction writing that I've never learned about, and now will have to.  Nor do I have to worry about writing about real, still living people, who might not like what I have to say.

So, then I got to thinking.  I hadn't inserted a fictional character with autism into that fictional memoir, but perhaps I should.

Why?

I am a long distance caregiver to two people.  One of them is my elderly mother in law.  Nothing unusual, there.   I am walking a path that millions of people have walked.  Nothing unusual there.

But no, there is something out of the ordinary. My mother in law lives with one of her sons. She has cared for this son every moment of his life.  He is developmentally disabled with a condition called autism. Mixed in with my mother in law's needs are those of my brother in law.  He will never be able to live independently.

What will happen to him when my mother in law passes on?  I've blogged about this several times over the years, and will be blogging about it again, soon.

I obviously know about the subject, and care.  So why not have the "fictional" me also experience this challenge, and perhaps I could set that part in a future that hasn't arrived yet in real life.

I just might do it. (I promise, no videos like the one in yesterday's blog post.) 

So...dear fictional daughter, hang on.  I might just be reopening that manuscript one day soon.

Gulp.

Thankful Friday - Morris the Cat Pays it Forward?

Do you remember Morris the Cat, or was he before your time?  This finicky cat, impossible to impress (except by a can of cat food), used to make me laugh. He used to advertise 9 Lives Cat Food, at least in the United States, back in the 1970's.

Morris has an interesting story. He was discovered at a shelter, and went on to a successful TV career.  He died in 1978, at the age of 19, after having made some 58 cat food commercials.  There have been successor cats, all, in turn, rescued cats.

Now we can do something for cats, in honor of Morris, here in 2013, or so I'm told.  And all we have to do is go online and...

....watch cat videos?

Yes. If you go to a site called Morris Rescue Watch, and watch videos, the ASPCA promises:

"The more you watch, the more hungry kitty bellies will be filled! Through our grants program, the ASPCA will be distributing the entire amount of food as in-kind donations nationwide to shelters, rescues, and other animal welfare groups that help feed cats in-need and at-risk."

On the ASPCA website, there is a long list of rescue organizations, humane shelters, and others, who will be receiving these donations.

Do you ever participate in these "free click" types of promotions?  I was slightly disappointed to find only two organizations in New York State, both in New York City, but clicked on a couple of the videos anyway.  Also, the total number watched just somehow didn't seem high enough - I would think cat lovers would be flocking to this.

So, this may be a good opportunity for the blogging community to "pay it forward".  Care to watch a cat video or two today?

What do you think?

Worries for the Future Part 2

In an earlier post back in August, I posted about needing to plan for the future of my brother in law, who is developmentally disabled with a condition called autism.  

We live in New York State, and what you are about to read may not apply in your state/country.  I want to share this as a cautionary tale, not as a "how-to" primer.

We've (we and other siblings/spouses) been involved in other advocacy for him, but now the time for this big step of "what comes after his Mom" has come.  She is 85 years old, and eventually, will no longer be able to care for him.  Or, worse-the inevitable will happen and she will leave this Earth forever.
  
If, heaven forbid, she died tomorrow, this is the future the State of New York has prepared for my  brother in law and other disabled individuals without a guardian, according to a knowledgeable person we consulted.
 
1. He becomes a ward of New York State;
2.  He can't stay where he lives (if his Mom died, he's the only other person living in the house) because he would be alone, and the state will not allow that.  He is deemed to need 24 hour supervision, and the state can't provide 24 hour supervision where he lives now  So housing must be found for him;
3. the court appoints an "advocate" for him, and it is potluck - could be anyone - maybe a person that doesn't know my brother in law at all;
4. Then the State finds emergency housing for him - "first available bed" which could be something not at all appropriate for his disability, but too bad.
And, by refusing the placement, it may be years before another opportunity comes up.

We can't help him without one of us becoming his guardian.

People with autism, in the best circumstances, find it difficult to cope with any type of change.  And this, to use a cliche, would be the mother (no pun intended) of all changes.

Years ago, my mother in law told us recently when we discussed my spouse applying for guardianship, her husband (dead some 15 years now) and her were advised to apply for guardianship.  Her husband elected to ignore this advice.  After he died, she saw a lawyer and certain other documents were drawn up but again, guardianship never happened.

The blessing is, my mother in law is still alive.  She is trying to age with some kind of grace, but refusing to let go of her disabled son.   This man is blessed in that he has a family who cares for him. We are finding that a lot of older men and women in that situation are all alone. No one cares.

So, my spouse is seeking guardianship for his brother.  It's been an adventure, which I will write about more as time permits.

"To be continued".