Monday, October 31, 2016

A Zombie Holiday

Happy Halloween!

My brother in law Bil, who has autism, doesn't get into Halloween that much.  That surprises me a little given that he enjoys reading horror stories.

So, in honor of Halloween, I wanted to share a recent news story here in the United States - two friends with Down Syndrome who wrote out a movie about zombies - and someone who helped to make that movie a reality. 


Friday, October 28, 2016

Where Do I Need to Be?

I may not have gone where I intended to go, but I think I have ended up where I needed to be.” – Douglas Adams.

I look back at my life - some personal reflections.

Before I ever met my now-husband of over 40 years, I was the daughter of a man who had suffered a traumatic brain injury before I was born.  It left him suffering from seizures and an occasional attack of rage.  My parents both tried to hide it from me (that kind of condition was considered shameful as I grew up in the 1950's) but, you can't hide a seizure disorder from a child forever.

And once I knew, and grew older, I saw the discrimination my father faced, because he had epilepsy.

Later, when I met my husband, I was well aware his youngest brother had a disability.  But still, it hurt when my future father in law rejected me for various reasons, among them having a father with epilepsy. 

Now, many years later, my father in law is dead, my mother in law is in her late 80's, and my husband is his brothers guardian.  And what am I?  Well, the life I am leading is not one I ever dreamed about as a little girl.

I don't fit into any ready category.  But, indeed, I feel that my life experiences (many of which I have never blogged about) have brought me to the place I need to be.

Among them, an advocate for my brother in law and, perhaps, in some ways, a trailblazer for the some who will come after me.

Linking to #FridayReflections, a weekly meme hosted by Corinne and Sanch Vee.

Sunday, October 23, 2016

Bil and the Park

They sat in the park, my brother in law "Bil" and his mother.

My sister in law said later, about watching them, that they looked like an old married couple.  But they aren't married.

My brother in law, Bil, has a developmental disability called autism.  His mother, my mother in law, has cared for Bil all of her life.  He isn't as deeply affected as some with autism are - he is verbal and can take care of his physical needs.  But he is far from independent.

They sat on a bench, I was told, close together.  It wasn't a romantic type of sitting, but was more like an old married couple, she said.  They sat close, but not touching.  They leaned into each other without touching, presenting an aura of "you and me against the world".

Will Bil be able to find independence?

He is in his mid 50's.  His mother is in her late 80's.  Her health is not the best.

We, the family, sit and wonder.

For right now, though, he helps take care of his mother more and more.  He does laundry for her, in the laundromat of the apartment complex where they live.  He takes out the trash.  He helps get things she can not reach.  She can't bend anymore, either.

But we wonder.  If she fell, would he know how to get help?  She says he knows how to call 911, but how do you practice that?

That park.  That sunny day, years ago, when they sat together like an old married couple.  Once, she took care of his needs.  Now he helps to take care of hers.  Fair play, fair turnaround, you may say.  But I wonder if she ever goes back, in her mind to that day in the park. Does


Linking to Five Minute Friday, a five minute exercise in free writing.  The theme:  park.

Saturday, October 22, 2016

If I Ran

The Friday Reflection prompt for today "If I ran the country, what would I do?", makes me think of the thing I fear most about Bil's life.

A Friday reflection on Saturday - why not? Just a day late.  So much runs late in Bil's world, my brother in law who is developmentally disabled.

We've been waiting for months for Bil to be approved for a service that will help him develop some skills that may lead to some independence for him, while working one on one with a service provider.

There is another program we were able to get him into, one that is benefiting him, but I live in fear that there will be budget cuts and the program will be discontinued.

If I ran the country, there would be no such thing as budget cuts that leave the most helpless of our citizens without services they and their families depend heavily on.  Budgets would be carefully written and managed.

Why this dependence on services paid for by government, you may ask?  Shouldn't families take care of their own?

The answer is "yes, but".  In many cases, family involvement in a child's life (including when that child is grown), is not enough.

For example, 21 is a magic age in our society - the age that a person becomes, officially, an adult.  They can drink alcohol.  They gain other rights.

If they are disabled, though, they "age out".  They lose services.  Their families, who have the tremendous burden of caring for them, lose supports.  What if your child has a condition requiring 24 hour supervision, just as one example?  Sooner or later, family members burn out.  Just think of a person giving care to an elderly or seriously ill person, because many of of have done that.  Now think of doing that for the next 50 or 60 years.  Could you? Could anyone?

Bil isn't 21. He's in his 50's. And his mother is approaching 90.  Bil has siblings, but they (for the most part) are older than Bil.  They are aging, too, and are developing health problems.  Fortunately, Bil does not require 24 hour attention or assistance.  But he needs it daily.

So, this is really today's question:

Wouldn't it benefit society to have safety nets in place for individuals like Bil?  Wouldn't it benefit society for people with disabilities to become more independent, to get training in life skills? To have adequate housing?  To have good respite programs for their caregivers?

 As it is, in many instances, neither the disabled person nor the caregiver can't get a good job.  The disabled person's medical overages are inferior - just try finding a dentist who takes Medicaid, just as one example.  People like Bil and their families must fight just to get training for everyday tasks that would make them more independent, less dependent on the taxpayer.

If I ran the country, we would find ways for these individuals to develop, to ease the burden on their families, and to save the taxpayer money.

But, I don't run the country.  And it is likely I never will.  But I still hold out hope for a good future for Bil.

Linking to #FridayReflections.

Friday, October 21, 2016

Bil's Declaration of Political Independence

I found it so hard to find a good title for this post about "Bil", my 50-something brother in law who has a developmental disability called autism.

Bil spends hours in his room, watching television.  But it isn't all for entertainment or to fight boredom.  Bil enjoys listening to political talk and news shows.  He has enjoyed these shows for years.

But he didn't vote until recent years, because no one really made the decision to find out if he was interested in voting.

When my husband and I moved Bil up here last year, we got him registered to vote.  He registered in the same political party as his mother, whom he has lived with all his life. That was not surprising. In many ways, he never showed much independence from the way she thought.  He watched the networks she watched for news.  He watched the talk programs she watched.

In the New York Presidential primary this April, he voted (we know this, because he told us - not because we asked him, because it is none of our business) for a candidate his mother would have supported.

But, a couple of months ago, he had an annual review at the agency that provides some services for him.  His mother, and my husband (who is Bil's guardian) came also.  By then, it was certain who would be running from each political party.

And there, he made a startling pronouncement, out of nowhere, while everyone discussed his progress.  It was the most surprising off-topic comment of his life.

He was voting for the "other" party's Presidential candidate, for a candidate his mother detested.

The people who work with Bil were pleased.  Very pleased.  Not because of who he was going to vote for, but because he had broken with his mother.  And indeed, according to my husband, Mom shot him a not-to-pleased look.

As he progresses in the program he is in (a topic for another blog post) he is slowly starting to show signs of independence - of trying to find his own way.  Most of us separate from parents as teenagers, finding our own way.  But Bil never did.  In some ways he never fully grew up.

I only think this is going to continue.

This may make it more difficult in some ways once Mom can no longer take care of him - he listens to her in situations where he won't listen to anyone else.  But he has the right to his own political opinions, and, in fact, his own opinions, period.  Opinions he has formed, not opinions handed down from someone else.

And yes, he will vote on election day.


Friday, October 14, 2016

Skywatch Friday Autumn in New York

My brother in law with autism, "Bil", has never learned to take photographs.  But he loves watching the weather.

I wonder how many sunrises he watches from his mother's apartment in upstate New York?  He's usually an early riser.

I remember one year, one of his brothers gave him a camera.   This was before the age of cell phones (which he does not use). The camera never got used.
October 13 upstate New York
In his honor, I took this photo for Skywatch Friday.  This is not edited or cropped in any way.  It looks like a rainbow on fire behind these trees, doesn't it?

Join other photographers from around the world for Skywatch Friday and see what sunrise and sunset looks like all over the world.

Tuesday, October 11, 2016

How to Create a Blogging Schedule

Now that I am trying to breathe some life into this blog, how should I do it?

Many experts say that, when you are creating a new blog, you should
1.  Commit to a schedule
2.  Ideally, in the first month of the blog; post daily
3.  Join blogging challenges.

I am familiar with blogging challenges and know that I am not ready to submit this one yet.

Nor, am I in a position to blog daily.

But, I can commit to a blogging schedule, and I will.  My experience is that people who follow a blog will accept a once a week schedule, if the posts come consistently.

I will commit to blogging once a week, on Fridays.  If I can blog more frequently than that, I will.   But I will make this committment, to prove that I am serious about starting this blog up again.

I invite you to join me in my journey.

Monday, October 10, 2016

Medicaid is Not a Villain

In the United States, there is a program called "Medicaid".  Actually, it isn't just one program.

Quoting from the Medicare government website:

"Medicaid is a jointly funded, Federal-State health insurance program for low-income and needy people. It covers children, the aged, blind, and/or disabled and other people who are eligible to receive federally assisted income maintenance payments."

Another website, called Medicare Interactive, adds:

"Medicare and Medicaid are two different government-run programs that were created in 1965 in response to the inability of older and low-income Americans to buy private health insurance. They were part of President Lyndon Johnson’s “Great Society” vision of a general social commitment to meeting individual health care needs. Medicare and Medicaid are social insurance programs that allow the financial burdens of illness to be shared among healthy and sick individuals, and affluent and low-income families."

But, too many people think that Medicaid is a program for people on welfare, and dishonest ones at that.  In other words, there is a big stigma surrounding Medicaid.  That's ironic, as Medicaid, just as one example, ends up paying for the nursing home care of many of our elderly. 

It also pays for many programs for developmentally disabled individuals, including Bil.

Which brings us to the beginning of our advocacy journey for Bil.  Let's go back to the early part of this century.

We found out there was something different about Bil from any of the other people with disabilities working at the sheltered workshop where he was employed.

The difference was that Bil was the only client working at the workshop who was not on Medicaid.

And, without being put on Medicaid, the local ARC (a national advocacy group for those with physical and intellectual disabilities) could not help Bil.

Medicaid provides a means for disabled citizens to get needed services - in many states (not New York, which offers a waiver under a different name) through something called a Katie Beckett waiver. 
(The story of the late Katie Beckett, who died at age 34 in 2012, is a story worth reading.)

These waivers form a crazy quilt of eligibility and a system that is cumbersome, and difficult to maneuver through, to put it mildly.  I am far from an expert, but I know more than on that day when I found out because Bil wasn't on Medicaid, ARC couldn't help him.  I know that system is broken, and people like Bil, and the people who want to help those people, suffer.

When I found out Bil was the only person in his sheltered workshop not on Medicaid, I also found out the reason. Bil's parents believed people should not be dependent on government. They had worked hard all their lives.  Nothing had been given them.  And they didn't feel they should take from the taxpayer.

The stigma Medicaid holds may have held them back, too.  At any rate, they never applied. But, we were to find that, to get any help for "B", any services (including, eventually, housing for him) we had to go the Medicaid route.  That's how the system works in New York and, perhaps, in the rest of the United States.

And so, the journey began to where we are today.

Sunday, October 9, 2016

The Power of the Weather Channel

Last year, Bil had to leave the only house he had ever known, a house he had lived in for over 50 years, and move over 100 miles away.

We thought we would get great resistance from Bil - but we didn't.

For that, we must thank Verison FIOS (the provider Bil's mother was using for TV and Internet) and The Weather Channel.

Bil is obsessed with the weather - in the world of people with autism, this is called a "special interest".  Ironically, although Bil enjoys following the weather on The Weather Channel, he is afraid of thunder/lightning, and heavy rain.

All was well, until the spring of 2015, when FIOS got into a dispute with The Weather Channel (money, what else?) and stopped carrying The Weather Channel.

But guess where FIOS doesn't provide service, and a different supplier did - and that supplier was carrying the Weather Channel?

Yes.  Up here.

And, although Bil was losing his childhood home, he was gaining the Weather Channel.

For him, it was an even trade.

Friday, October 7, 2016

Starting Over Again #FridayReflections

Forgive me, but it has been over two years since I last posted.

I've been hiding.  Yes, I took this blog private, removed it from the Google Bloglist, and made it invisible to search engines.


Because family members read "my other blog".  Yes, I have another blog, one where I don't talk that much about autism (although I should).  Various family members read that blog.

They don't know about this blog.

But so much has happened in the over two years since I last posted.  Bil doesn't live hours from us but, rather, he lives minutes away - still with his mother.  And I don't want to hide any more.

Instead, I want to harness the power of blogging.

My husband's brother is not a young man or woman.  Bil, as I call him in this blog, is in his 50's.  I've been in his life a long time.   I know that one day (we hope it won't be for years, but life is unpredictable) the mother who has been his shield, his interpreter, and his caregiver, will no longer be able to care for him. 

It happened last year, for several weeks, after my mother in law had surgery, and suffered complications. How he reacted has given us a glimpse into the type of future Bil may want. 

We continue to learn.  And I forgot how much I can learn by continuing to blog about all aspects of my life, including the aspect of having an in law with autism.

So I need to continue this story, the story of Bil, my husband, and me.  Warts and all.  Rants and all.

Perhaps, I will make connections with people in similar situations.  That is my hope, anyway.

I also know that increasing numbers of individuals with autism are entering adulthood, and, more than ever, I feel that I have something to offer these families.  I can't do that in hiding.

I don't know how often I will post, but I promise it will be more frequent than once every two years.

If you like what you see, please join me on this continuing journey.

 Linking this with #FridayReflections