Sunday, April 30, 2017

Zeroing (In) #AtoZChallenge

I made it!

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

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

Now what?

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

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

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

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

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

A virtual bouquet of violets for you.

Zee End.

Saturday, April 29, 2017

Yearning (for good housing) #AtoZChallenge

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

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

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

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

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

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

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

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

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

"Y" Day on Blogging from A To Z.

Friday, April 28, 2017

Xenophobia #AtoZChallenge

Websters dictionary defines Xenophobia as:

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

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

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

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

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

Both in harmony.

One could wish....

Thursday, April 27, 2017

Watching and Waiting #AtoZChallenge

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

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

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

Nothing went as planned.  Nothing.

April didn't give birth until April 15.

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

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

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

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

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

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

Thank you for joining me on my Unknown Journey.

Wednesday, April 26, 2017

Voting #atozchallenge

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

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

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

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

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

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

Is he less able to vote than a neurotypical voter?

Should his vote count for less?

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

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

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

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

It's a national disgrace.

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

Did you vote in the last election whereever you live?

Tuesday, April 25, 2017

Unknown #AtoZChallenge

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

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

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

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

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

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

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

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

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

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

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

Monday, April 24, 2017

Taking The (Measure) #AtoZChallenge

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

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

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

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

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

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

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

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

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

My family's unknown journey ahead continues.

Saturday, April 22, 2017

Sheltered (Workshops) #AtoZChallenge

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

Others say, "perhaps not so fast".

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

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

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

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

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

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

Bil walked off another job.

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

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

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

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

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

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

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

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

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

Friday, April 21, 2017

Resilient #AtoZChallenge

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

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

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

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

We were wrong, and I still marvel at it.

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

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

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

He did it without much complaint.  Another surprise.

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

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

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

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

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

Don't underestimate him.

Thursday, April 20, 2017

Quirks #AtoZChallenge

We all have quirks, don't we?

Here are some common ones.

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

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

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

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

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

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

Wednesday, April 19, 2017

People (First) #AtoZChallenge

People with disabilities are not their disabilities.

They are People first.

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

Now, I advocate for an autistic brother in law.

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

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

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

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

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

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

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

Tuesday, April 18, 2017

Ordinary #AtoZChallenge

Some of us crave the unusual.

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

Definitions of Ordinary: Normal.  Commonplace.

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

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

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

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

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

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

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

Monday, April 17, 2017

New #AtoZChallenge

New.  It's usually a good thing.

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

Not so for my autistic brother in law.

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

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

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

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

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

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

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

Saturday, April 15, 2017

Mortality #atozchallenge

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

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

Today's post is about mortality.

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

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

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

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

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

How do we approach it?

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

Friday, April 14, 2017

Learning #atozchallenge

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

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

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

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

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

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

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

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

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

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

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

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

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

Thursday, April 13, 2017

Knowledge - ( Five Things to) Know #atozchallenge

Knowledge is indeed power.

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

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

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

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

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

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

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

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

Wednesday, April 12, 2017

Journeying (The "Origin" Story) #atozchallenge

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

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

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

City girl.  Country boy.

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

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

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

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

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

That was not the truth, not even close.

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

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

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

Tuesday, April 11, 2017

Independence #atozchallenge

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

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

The question is - can he ever achieve that?

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

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

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

Quickly, we learned some things.

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

That wasn't all.

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

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

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

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

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

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

Monday, April 10, 2017

Hate Has No Home Here #AtoZChallenge

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

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

Desecration of cemeteries. 

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

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

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

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

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

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

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

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

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

It's all part of Journeying through the Unknown.

Saturday, April 8, 2017

Guardianship #AtoZChallenge

My husband is the guardian of my autistic brother in law, "BIL".  A court has determined Bil is not competent to make decisions affecting his finances or his health, although it is actually more complicated than that.

One of my husband's duties is to keep his brother safe.

Right now, we are facing what is hopefully mild flooding in our area.  Bil is actually safer than we are right now- we are in a neighborhood that has flooded twice in the years that we've lived here.  
A park by our house on April 7The small building to the right is a picnic pavilion

But it's food for thought.  Our neighborhood has been evacuated twice in recent years, once in 2006, and once (in a flood much worse) in 2011. We would be in no position to keep Bil safe.  But, ironically, we might be able to take refuge in the apartment where Bil and his mother live.  They are, unlike us, not in a flood zone.

It really is ironic - Bil keeping US safe. 

So, what is guardianship all about? 
Note: this post is not legal advice, and is not meant to guide anyone in any guardianship effort.  Also, this process may differ substantially in states other than New York. 

My brother in law is smart in certain areas and naive (if I may use that word) in others.

He is in his 50's and, up to about three years ago,  no one had ever been "Bil's's guardian. There are many decisions he can not make for himself. 

In a talk with his Medicaid Service Coordinator, my husband, who is Bil's oldest brother, found out that if something happened to Bil where a decision (financial or medical) had to be made and there was no guardian, there would be an involved court process where the court would appoint a guardian for Bil.  To put it mildly, it would not be something any of us would want for Bil.

So we hired a lawyer, up where we live (at the time, Bil lived about 150 miles away), to help us through the guardianship process.  

The guardianship process we underwent that year is something called an Article 17A guardianship.   From what we have found, it is not  do it yourself process, although you can do it (technically) without legal help.  We chose to use a lawyer.  There are two other ways to gain guardianship in New York, which we are not familiar with at all.  Again, we aren't legal people.  Do not consider this as advice.

For us, the guardianship application was a slow process, and it is obvious that New York State wants to have safeguards in place for the person you are seeking guardianship of.  Think about it - a person in New York is assumed to be competent once they turn 18 and become adults.  The court wants to know a person is not competent before it grants a guardianship. You don't want to take the right to make decisions away from a person who is capable.

We had to give the court a lot of personal information about the proposed guardian and people living with him/her, and standby guardians, including addresses going back over 20 years. 

We had to get statements from two professionals giving information about Bil.This took a while.

The court wanted an original birth certificate for Bil. This became its own mini-nightmare.  IF YOU DON'T HAVE AN ORIGINAL OR CERTIFIED BIRTH CERTIFICATE IN YOUR POSSESSION OR DON'T KNOW WHERE IT IS, YOU MAY WANT TO CONSIDER GETTING ONE.  NOW. (The difficulties we went through for what should have been a simple process would be a good topic for its own mini-post.)

In the middle of this, my mother in law was diagnosed with cancer. There would have been a way to speed up the process if it had been needed. Thank heavens it wasn't, and my mother in law's prognosis remains good.

Several months (and several thousands of dollars later), my husband, myself, and other interested parties stood before a judge in the Surrogate Court where Bil and my mother in law lived.  The judge asked my mother in law if she agreed with the naming of my husband as "Bil"'s guardian.

She did.  The judge said he would rule and dismissed us.  After months of preparation, the hearing took just a few minutes.

But having a guardian, sometimes, isn't enough.  In some ways, it turns out being a guardian doesn't give you much power - just much responsibility.

Even in a natural disaster, which we are hopeful we will avoid.

Just another step on the Journey through the Unknown- my theme for the Blogging from A to Z Challenge.

Friday, April 7, 2017

Fear of the Future and Flood Fun - #atozchallenge

I had set out participating in the Blogging from A to Z Challenge with the aim of writing about some of my experiences as the sister in law of an autistic man in his late 50's.

Now, it's possible we may be facing a crisis.  I've heard from two people, one of whom has contacts in the advocacy community, that our local ARC may be closing.

Quoting from the national Arc website:

"The Arc is the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities and their families. We encompass all ages and more than 100 different diagnoses including autism, Down syndrome, Fragile X syndrome, and various other developmental disabilities."

Bil has been associated, in some ways, with Arc's where he used to live, and now the local one, for over 30 years.  If they are indeed closing, this, to put it mildly, is not going to be a good thing.

My spouse is not one to try to get support.  I am.  And, more than ever, I need to connect with people online.  There are support groups for parents, for sibs, for autistic children and adults.  For in-laws, not so much. In fact, I've found that in laws are not welcome in sib support groups - they want a safe place to be able to vent about their unique experiences.  I can respect that, but I find I'm the one reaching out and researching many times, as my spouse has his hands full doing things for his aging mother and trying to cope with a physical job that is harder and harder to do now that he is a senior.

I thought I was a pretty good online researcher, but finding support for my particular circumstance seems to be eluding me.

Programs continue to be cut.  Funding continues to be cut.  And organizations such as Arc can not do their work without funding.

It's not a good situation.

I fear for the future.  And, right now, with our area of upstate New York, I also fear for flooding.  If our area flooded the way it did in 2011, Bil would have another new adventure - a Red Cross shelter.

And that would not be Fun for any of us.

My A to Z theme - The Unknown Journey Ahead.

Thursday, April 6, 2017

Eyeglasses #atozchallenge

 My theme for the Blogging with A to Z Challenge is - Journeying Through the Unknown. 

Today, a story about eyeglasses.  Such a common item, but even something like eyeglasses can turn into an experience when Bil is involved.

For years, my brother in law "Bil"wore the same pair of glasses.  He is autistic, and change can be traumatic for him.

We would travel to where Bil and my mother in law lived, about 150 miles from our house, several times a year. We never questioned him wearing what seemed to be the same glasses year after year.

We figured that Bil seemed always to have the same frames because he either didn't need new glasses or he insisted on using the same frames for new prescriptions. Or maybe he was able to find frames that looked like what he had been wearing for many years.  And I do mean many years.

In 2015, we had to move Bil and his mom up here, near us and another family member, because of my mother in law's declining mobility, and for other reasons.  Sure enough, about two months after the move, Mil had to be hospitalized.  A stint in rehab followed, so we were very much in Bil's life.

One day, he presented us with his glasses.  The frame had broken.

We managed to find a place that would fix it, but, in questioning his Mom, my husband discovered that Bil not been to an eye doctor.  For many years.

(insert some guilt here, but nosense in guilt, we must move forward.)

We had to get Bil to an optometrist.   Bil agreed to be examined.  The optometrist found Bil needed new glasses, all right.  In fact, he needed bifocals.  Fortunately, there weren't other issues.

Bil got his glasses  But then, shortly after, we noticed he was back to wearing the old, obsolete glasses.  We told Bil that he had to wear his new glasses.  On further investigation, we found he was having trouble getting used to them.

Because of cost, we had gotten lined bifocals for him (he has no vision insurance).  With (pun intended) 20-20 hindsight, perhaps we should have spent extra money on no lined, which would have been easier for him to adjust to.

And then the old glasses he insisted on wearing broke again....

I don't know yet how this situation will resolve itself.  Just another day in the life.

That's how it goes.

Wednesday, April 5, 2017

Dentists #atozchallenge

If you have landed here from the Blogging from A to Z Challenge (or not), welcome.  
My theme is - Journeying Through the Unknown.   My journey is with an autistic brother-in-law.

Bil dislikes going to the dentist.  Strongly dislikes.

In fact, when we moved him up here two years ago to be closer to family,it had been years since his last dental visit.  To be blunt about it, his breath stunk.  I dreaded  riding in the car with him.  Bil is totally oblivious to the smell, too - a little surprising, perhaps, given how sensitive his senses are.

Yes, he brushes his teeth, although not as much as he should have good dental hygiene.

We've been through this before.  It took quite a bit of effort to get him to the dentist last time, and his mother, who is going on 90, has had so many health concerns in the past three/four years, that her needs always seemed to get addressed first.

My husband is now Bil's guardian.  There is another brother living about 20 minutes from us.  All of us knew this hygiene situation couldn't be allowed to continue, but we couldn't figure out how to get him to the dentist.

Fortunately, fate intervened.

Going to the medical doctor with his mother has always been part of his routine and he's accepted having a primary care doctor.  On a visit last year, we were told their doctor had left the practice.

There was a new doctor, and on her first exam, she mentioned Bil's breath, and the fact it could indicate something was wrong in his mouth.

Lo and behold, suddenly Bil wanted to go to go see a dentist.  His anxiety (an issue with him) had kicked in.

I called our dentist's office and they were willing to see Bil - in fact, if the visit was not successful (i.e. Bil didn't cooperate enough to be examined) they said they wouldn't charge.  This was important, as our dentist does not accept Medicaid.  Almost no dentists in our area do.  Bil  would have to pay totally out of pocket.

So off my husband and Bil went.

This is the waiting room of our dentist.
Bil took a seat, and soon, he was in a dentist's chair for the first time in years.

They had to spread the needed cleaning over several visits, but, fortunately, there was no major work needed other than the cleaning.

Now, his breath smells so much better.

He will go back later this month for a checkup, and he is not being oppositional about it.  But now there is another plot complication - the hygienist who did the previous work won't be there that day.  My husband talked to Bil about it, giving him the choice of moving the appointment or not.  He decided he wanted to keep the appointment as is.

It's a milestone.  Bil has gone to the dentist.  Whether they can teach him to maintain dental health, and whether he will change his habits,  is another matter. 
But at least, we can get him into the habit of periodic cleanings, something his aging mother did not have the energy to do.

"D" day on Blogging from A to Z Challenge.

Tuesday, April 4, 2017

Christmas - #atozchallenge

Holiday time is dreaded by many families who have a member on the autistic spectrum. If you've joined me for the Blogging from A to Z challenge, you may have this same challenge.

My theme for A to Z is - Journeying Through the Unknown. 

I never knew my brother in law Bil when he was really young, to know how he behaved at Christmas time.  So many autistic children find the holidays a difficult, overstimulating time. Because Bil is in his late 50's, we don't suffer from that problem.  But, we don't always know what Bil thinks, because, so many times, he doesn't share his thoughts with us.

When my mother in law still lived in the home where Bil grew up we would exchange gifts, with Bil staring into space and not making eye contact with anyone.  Yet, you knew he was watching....observing.

He didn't seem to care.

But I quickly found out that this only meant that Bil had his own ways to show he wanted to be with us.

Bil picked (and still picks out) gifts with the utmost of care.  I don't know how much help his Mom gives him, but he always tries to base his gift on an interest the person has.  For instance, he know I love birds, so for a few years he gave me bird themed gifts.  A singing bird alarm clock (I don't use it as an alarm clock, but, after all this time, it still sings occasionally).  A bird jigsaw puzzle.  A bird pin.

Bil isn't shy about telling us what he wants.  It's mostly gift cards to his favorite stores.  He's quickly learned that gift cards allow him the freedom to choose what he wants to buy.

He is happy to be with family, but doesn't want to get involved in any of activities after dinner.  He wants to be with us, but on his own terms.

So he retreats to a far chair while we open gifts and talk.  He becomes an observer, only a participant when it's his turn.

Bil is fortunate, in a way, that he was born into a family that always allowed him to participate in the holidays in the ways that he wanted to.

I hope he, in turn, thinks we are "just right" for him.

"C" Day in the Blogging from A to Z Challenge.

Monday, April 3, 2017

"Bil" #atozchallenge

 Thank you for stopping by, whether or not you have come here through the Blogging from A to Z Challenge.
My theme is - Journeying Through the Unknown. 

The Unknown Journey is with my brother in law.

Who is my brother in law?   I call him "Bil" in this blog.

 "Bil" is not easy to know.  He doesn't open up easily to people he doesn't know.  It takes him a long time to warm up to someone.   Over the years, I've compiled this top ten list:

Ten Ways to Win Bil's Heart:

1.  Accept him for who he is.  Of course, isn't that true for everyone?

2.  Take him shopping. Bil loves to get out of the house and shop.  He doesn't drive, and doesn't live in walking distance of any shops, so he is dependent on family to do this for him.

3.  Buy him chocolate.   Bil loves chocolate.

4.  Make him Chicken Divan.  I don't know if this recipe is the one his mother uses, but it is quick and easy.

5.  Let him follow his routines.  For Bil, routines give stability in a world he sometimes finds hard to understand.

6. Turn on The Weather Channel.  Why? Because he loves weather, and he loves weather broadcasters who happen to be female and blonde.

7.  Be a New York Mets fan.  Because he is a Mets fan, too.  He follows their games, memorizes the scores, and will sometimes, out of nowhere, asks if they won the night before.

8.  Buy him a book he likes, especially at Barnes and Nobles.  Science/weather is at the top of his list.

9.  Don't bring him into uncomfortable situations.  If you have to, it's good if there is a TV nearby.  See #6.

10.  Don't force him if it can be avoided. (Isn't that true for everyone?) The problem is, sometimes there are things that have to be done that Bil may not want to do.  It can be so tricky to talk him into doing something like that, like going to the dentist.  Sometimes, I have told him flat out, none of us always get what we want. The key here, I think, is to "pick your battles".  Ask:  does it really matter?

I have a long way to go in understanding my brother in law.  But, if we take the time, we may find an interesting person beneath the layers of defensive behavior he has built around himself.

"B" Day in the Blogging from A to Z Challenge.

Saturday, April 1, 2017

Autism #AtoZChallenge

Welcome to the Unknown Journey Ahead. If you have a family member or a friend who is impacted by autism, or are interested in the topic for any other reason, you've come to the right place.
My theme for the Blogging from A to Z Challenge is - Journeying Through the Unknown.   Because that is the theme of my life.

What is autism?  Even trying to explain autism can cause some controversies.  There are those who consider it a disability and seek a cure for their loved ones.  Others consider it as a difference, with the disabilities belonging to society as a whole and their attitudes. 

According to the organization Autism Speaks:

"Autism, or autism spectrum disorder, refers to a range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication, as well as by unique strengths and differences.".  They go on to point out:

  • The Centers for Disease Control and Prevention (CDC) estimates autism’s prevalence as 1 in 68 children in the United States. This includes 1 in 42 boys and 1 in 189 girls.
  • Around one third of people with autism remain nonverbal.
  • Around one third of people with autism have an intellectual disability.
  • Certain medical and mental health issues frequently accompany autism. They include gastrointestinal (GI) disorders, seizures, sleep disturbances, attention deficit and hyperactivity disorder (ADHD), anxiety and phobias.
Autism is a "spectrum disorder".  This simply means that there is a wide variation in how individuals with autism and related disorders "present".  So when I write about my brother in law, please keep in mind that no two people with autism are exactly the same.

I have a brother in law with autism I call "Bil" in this blog.  He has been in my life since the 1970's.

"Bil" is now in his late 50's.

I hope, one day, to turn these experiences into a book, because there is an epidemic of young people with autism, and now the oldest of them are reaching adulthood.  Their loved ones need a road map. Perhaps I can help with that.  Actually, I could use one, myself.

My brother in law was born back in the "bad old days" before there was early intervention.  He went diagnosed for almost his entire childhood, and my mother in law was blamed for his differences.  Today, that's hard to believe, but it's true.

It is hard to communicate with him.  Meanwhile,  I am, by nature, a shy and reserved person.  Being with him can be frustrating, to say the least.  I may not always like him, but I've learned you don't have to like someone to love them.

But I fight for his right to live with dignity and full potential.  And I fight for myself and my right not to be swallowed up in his life.

 I hope you will join me on this Journey Through the Unknown.  And while you are at it, I hope you will join a link up at a blog called It's All a Matter of Perspective.  

That blogger is opinionated, and you may not always agree, but you will always get something of value from what she has to say.

This April, I am participating in the Blogging from A to Z Challenge.  Today, April 1, my blog topic starts with the letter "A".   On Monday (we have Sundays off, except for April 30) my blog post title with start with B, and so forth, ending with "Z" on April 30.