Can Determination Be the Key to Success?

Determination.

Many bloggers participate in a meme to choose a word for the year, that they will use as a springboard to achieving goals in the coming year.

As my regular blog readers know, I am the sister in law of a man in his late 50's, living in New York State, who has a developmental disability called autism. I call him "Bil". My husband is his brother's guardian.  Together, we are determined.  Although Bil lives with his elderly mother, he will be my husband's responsibility one day.

It's not an easy thing.  Therefore:


DETERMINATION will be my word for 2017.

DETERMINATION will give us the strength to find services for Bil that will permit him to gain some independence; to be able to do more of the kinds of things he wants to do.  This is not an easy thing to do-dealing with government bureaucracy never is.  In 2016 my husband had to deal with delays, ranging from the agency moving to paperwork being lost to...well, you get the idea.

But it looks like the intake for this service may actually happen later in January.

DETERMINATION will help both of us persevere.  I refuse to be be swallowed up by the need to help with the needs of my elderly mother in law and "Bil".  Is it selfish?  I do not think so.

My DETERMINATION to eventually write a book to help others with an adult member of their family who has autism had disappeared.  I had hoped to use this blog as a vehicle for that.

What I am finding is that I am still floundering; that this blog is still adrift without a clear course of action.  I am determined for that to stop, even if I have to stop posting for a while and regroup.

Finally, I am determined that Bil, once the time comes that his mother in law can no longer care for him, that he will have a place to go.  Shouldn't that be our home?  Well, that would be worth a post or two just on that topic.  We are both older than Bil.  Living with us can not be a permanent solution.

And, there is the matter of the incoming President of the United States. There is nothing I've seen that convinces me that Bil's quality of life will be improved by the change in administration.

I can only hope I am wrong.

Come link with me and others revealing their word for 2017.  Join us at Alphabet Salad and  #FridayReflections.

So... what's your word for 2017?
Please share... then check out some other posts in the linkup!

1.	Laurel Regan, CZT @ Alphabet Salad
2.	Upasna @ LIfe through my Bioscope
3.	Chandni
4.	Deepa
5.	The Unknown Journey Ahead
6.	Corinne Rodrigues
7.	SHALINI BAISIWALA
8.	Alana
9.	Amrita
10.	Mayuri
11.	Sanchie @ Living my Imperfect Life
12.	Suzy at Someday Somewhere
13.	Shraesta
14.	Vancity Girlfriends
15.	Lata Sunil
16.	Shaini : Kohl Eyed Me
17.	Sunaina Sharma
18.	Maliny Mohan
19.	Vinitha
20.	Pamela
21.	Glenda Mommies Reviews
22.	Michele Wynne
23.	blogqueendiane
24.	Cathy Graham
25.	Vasantha Vivek
26.	Gail Williamson @Found and Bliss
27.	Esha @ SoulTalk

(Cannot add links: Registration/trial expired)

A Legacy of Love

I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel. – Maya Angelou.

Sometimes, people make the mistake of thinking that people with autism can not feel.  That is so far from the truth, although they find it difficult to express those emotions in a way that we, the community of those who don't have autism, can easily understand.

When you grow up different, many of your interactions with others are negative.  You may grow up believing that you are not worthy of love.  For those people, the special people who make them feel good have special places in their hearts.

Since moving to the area where we live in upstate New York last year, my brother in law, "Bil", has undergone many changes in his life.  It has been hard for him, but "Bil", who has autism, doesn't show much of it externally.

For the past year, "Bil" has been able to participate in a day program two or three times a week.  They transport him to and from, and he can play word games, exercise, color (adult coloring), and enjoy lunch.

Recently, the program had a holiday open house.  "Bil" came with my husband, me, and my mother in law, "Bil"'s mother.

We were greeted by one of the directors.  "Bil!", she exclaimed, "it is so good to see you.  Thank you for coming!"  She turned to us, smiling.

"Bil is one of our favorites here; we are so happy to see him.  We are happy he comes to our program.  We enjoy him being here."

I looked at "Bil" His face could have lit up the room. It may be a cliche, but now I know where the expression comes from.  I have known him for over 40 years, but I have never seen that kind of smile on his face.

Maybe that director says that to all the people who come.  Many are elderly, all have some kind of medical or developmental issue.  But it didn't matter.  "Bil" knows he is valued, that he has a place where they can't wait to see him come off the bus and walk in the door.

"Bil" will never forget how that director makes him feel.  And neither will we.  From his school days, and beyond, my mother in law received so much negative feedback, as do the parents of many with autism.

I wonder how many times she's been told "we like your son, we want him to be here."

None of us will forget that evening, and the power of a few words.  That director truly is leaving a legacy of love with those she works with. 

Linking with #FridayReflections. 

If Only #FridayReflections

I am again joining #FridayReflections over at Everyday Gyaan.

The prompt today is "If you could re-take a class from your school or uni days, which would it be?"  I want to look at this prompt from another angle.

I wish that there had been a different educational world for my brother in law with autism.

I remember well, my first experience with special education, and how far we have come in the last 50 years.

I started elementary school in the Bronx, a borough of New York City, in the United States, in September of 1957.  One day, and it may have been in second grade, we had to move down to the "special ed" room for several hours.  It was a scary place.

It was located in the basement of the elementary school.  The "special ed" students (our name for them used a word totally inappropriate today - a word that began with the letter "R"), were isolated from the rest of the student body.  I never did see them again.  I barely knew they existed.

Those children, isolated in my school's basement, had few rights in education, as did "Bil", my brother in law, who was born in 1958.  Not until 1975 was the "Education of Handicapped Children Act" passed.  By 1990, this law had assumed its current name, IDEA, the Individuals with Disabilities Educational Act. 

But these laws were too late for my brother in law.  I can wish that I could go back in time and bring what exists now to those times.

There was no modern Child Find when Bil started school in the early 1960's.  Earlier, when he was a toddler, there was no alarm over the fact that Bil was not speaking by the age of two.  Rather, my mother in law was blamed for his deficits.  She "spoiled" him, her doctor claimed, when he pointed to items and grunted.  He threw tantrums when he wasn't understood. He didn't speak until he was five.

In today's world, his autism would have been recognized at an early age, hopefully.  He would have been entitled to educational services through the age of 21 (after 21, what happens is a long, and not necessarily pleasant story, to be told at another time).  We'll never know what Bil might have been capable of, had he received the proper interventions.

But, as a wise autism advocate once told me, we can not live in the past. We have to work with the present day Bil, to make sure he has the best quality of life available to him.

But still...I dream....if only.  If only, in life, there could be do-overs.

Come over to Everyday Gyaan, link up if you wish, and read some other Friday Reflections.

Skywatch Friday - Moon over the Mall

My brother in law is developmentally disabled.

One of his favorite activities is visiting our local shopping mall in the Southern Tier of New York State.

I took this picture right after sunset tonight, trying to frame the moon between the utility wires.

Linking to #SkywatchFriday.  Come visit sky pictures from elsewhere in the world.

Ten Ways to Win His Heart

My brother in law "Bil", who is developmentally disabled with a condition called autism, 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.  His disability also affects his ability to relate to, and communicate with, people.

Today's prompt on #FridayReflections, is to describe "10 Ways to Win Your Heart". Since this blog is, in part,  about my brother in law and my relationship to him,  I asked myself, how well do I know Bil?  Can I try to answer this prompt for him, since Bil does not go online and does not read blogs?

Let's see how well I do.

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.  Yes, 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.  Because, for people like Bil, routines give stability in a world he finds hard to understand.

6.  Let him watch 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, ask a question about if they won the night before.

8.  Buy him a book he likes, or take him to the library.  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.  The problem is, sometimes there are things that have to be done that he may not want to do.  It can be so tricky to talk him into doing something like that, like going to the dentist.  And 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".  As I raised a child into adulthood, I know a lot about picking your battles.

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.

Come link with other participants in #FridayReflections.

Gratitude

Today's #FridayReflections post: "Since today is Thanksgiving Day, write a post on the subject of gratitude."

My father suffered a traumatic brain injury during his service in World War II, which left him with lifetime seizures.  Medication could not completely control them.  Without the medication, he suffered from what was then called grand mal seizures-I believe the modern term is tonic-clonic.  With medication, most of the seizures were downsized to what they then called petit-mal.  Now, I believe,they would be called absence seizures.  Whatever they were called, I saw some of the discrimination my Dad suffered.

But it didn't stop him from being a wonderful father.  I have many treasured memories of him.  My Dad used to love to watch houses being built.  We were never able to afford one, but on Sundays, he would take me for walks and we would walk to houses under construction.  Perhaps he would dream.  I would listen to baseball games on a tinny transistor radio.

Thankfully, although some individuals with autism suffer from seizures, I have never seen my brother in law "Bil"  have one. But, when he was young, he was suspected of having seizures.  He was put on a medication, Depakene, that made him so sick that his mother took him off.

Today, the day after our American Thanksgiving  I want to share the story of a mother who has a child with epilepsy - and how those with epilepsy can be taken from us at any time due to a condition that many of us have never even heard of.

It's a scary thing, these unknown countries that co exist with the countries of good health.  I am grateful for the many good things in my life:

The people I spent Thanksgiving with.
The smell of roast turkey, the taste of eggnog.
The full bellies we had the opportunity to have.

I am grateful for Bil's physical health and the Internet that allows me to blog about him and about life in general.  I am grateful that society has changed in Bil's fifty-something years of life, so that he is more accepted in society.  Today I pause in gratefulness.

What are you grateful for?

Being Who I Am

I have a confession to you, my readers participating in #FridayReflections.

My post today is inspired by this quote:  “Be who you are and say what you feel, because those who mind don’t matter, and those who matter don’t mind” – Bernard M. Baruch.

It is so hard to know the direction I want to take this blog.  You may have noticed that, several times, I've taken this blog in various experimental directions.  For instance, several weeks ago, I participated in a five minute free writing challenge from a weekly prompt.  The free writing was fun, but I don't think I will participate in that particular challenge again.

Before then, I posted in a Skywatch Friday. I enjoy Skywatch and participate using my other blog. The problem is that my developmentally disabled brother in law Bil, who I blog about here, doesn't take photos.

If he did, a blog where photographers post pictures of the sky each Friday would be a wonderful showcase for him.  Bil loves the weather after all.  But he doesn't.

I even thought about writing a book with this blog, but I am not sure if anything I write can can add value to the topic of caring for an adult with autism.


So,  I found myself lost.

I don't want to share these posts and connect with others on Facebook, as Facebook prohibits multiple accounts, and I don't want to post this under my real name for various reasons.  Most blogging challenges I know about require Facebook participation.  After the Presidential election here in the States, I am trying to limit my Facebook time to save my sanity.

Perhaps, this is a good thing, because I will have time to iron this out without worrying about pleasing readers.

Since I started this blog years ago, I only wanted to say what I felt, and be true to myself and to "Bil".  So I will continue on that path.  Even if I rant a little sometimes.  But there will be joy, too.

I, again, invite you to join me on this Unknown Journey.

Come visit the other bloggers reflecting on FridayReflections and Make Your Words Count.

Why Fairy Tales Are More Than True

The United States Presidential election is over.  "Bil", my brother in law with autism, proudly voted.

He needed his brother's (my husband's) help.  He didn't understand much beyond the President and the vote for Senator. He's only lived here a little more than a year, and knew nothing about local candidates.  So he only voted for what he understood, and that's good.

But, in a way, his troubles may have only started.

I wonder what Bil thinks of all the post-election stuff happening - the fear, the protests.  He doesn't engage in any social media. He doesn't own a computer, a smart phone, or a tablet, and I decided years ago not to encourage it.  He is too naive - he is black and white in a grey, grey world.

Does he realize there are people out there who hate him, that consider him less than human, because of his disability?

Does he realize some of those haters want people like him gone from our society?  That isn't restricted to the United States, either.

Our President-Elect has not discouraged these haters, and there are, in fact, anecdotal reports of hate graffiti and worse since the election ended.

This is going to be a long four years for Bil, although he does not know it yet.

Which leads me to #FridayReflections.  One of the prompts is "What 10 things do you hope to be remembered by?  The first one would be "That I helped to make a better life for my disabled brother in law." because if we don't, who will, especially with all the incidents of hate taking place in our country?

Here are the others.

That I tried to make this Earth, in my own little way, a better place than it was on my day of birth;

That I raised a child who grew up to be honorable and hardworking;

That I remained true to my beliefs and did not give into hate (it's so easy to);

That I gave faithfulness and joy to the man I chose to spend my life with;

That I helped others with my skills;

That I did not misuse the talents I was granted from above;

That I honored the memory of those who came before me;

That I will be remembered for the good things I did and not the bad; and

That I recorded the beauty of this world and of the times I lived in.

“Fairy tales are more than true: not because they tell us that dragons exist, but because they tell us that dragons can be beaten.” – Neil Gaiman.  

I hope Neil Gaiman is right, because I fear we are going to be seeing a lot of dragons in the coming months and years.

Please visit the other blogs linked to #FridayReflections.

The Humorists #FridayReflections

Today, on #FridayReflections, the prompt is:  “To be yourself in a world that is constantly trying to make you something else is the greatest accomplishment.” There is a certain alchemy about words and the process of expressing yourself.

Bil, my developmentally disabled brother in law, has problems communicating but, without fail, he is always true to himself.  Here's one example:


There is very little, in my opinion, funny about the upcoming Presidential election.

Bil, however, thinks in different ways than many of us.  Having autism means that it is difficult, many times, for him to communicate his thoughts with us.  If he laughs, it is (many times) at private jokes. He will burst out laughing at the dinner table or while listening to some of us talk, whether or not the topic of discussion is funny (to us, that is).

Bil goes to a day program two or three times a week, where he is encouraged to engage in various activities - exercising, bingo, Sudoku , and even coloring.  A couple of times a year, family members can attend a review of Bil and his progress.

At the last review, my spouse, one of Bil's brothers, was told that Bil likes to tell political jokes.  And apparently, they are good ones (or at least not anything that upsets anyone).

It's nice when you hear about a side of someone else you think you know. It is so hard to know Bil because he is closed off to us so much of the time.

But he loves to watch, to observe.

Which brings me to another man who loves to watch, to observe, and to use his words.

His name is Garrison Keillor and many know him for a weekly show he did for many years until recently - A Prairie Home Companion.

What I never knew, about recently, is that Mr. Keillor is on the autistic spectrum.  Just like Bil.

Is there a hidden Garrison Keillor inside of Bil?  We may never now, but I suspect his inner life is quite rich.  And, every minute, he is true to himself.

Can we say the same?

Come on over to #FridayReflections  and check out what other bloggers have written.

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. 

Enjoy!

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.

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

THE END.

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

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.

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.

Proudly.

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.

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.

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.

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.

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.

Why?

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