A New Year, A New Me?

The driving force of your life 
Three things I’d do differently this year

I've never attempted to address two writing prompts to the same post, but 2017 is going to be a year of challenge for all of us.  A President will be taking office on January 20 who is determined to make a lot of changes, and some of these changes may not be good ones for our family.

So today, I am participating in two linkies.

As my readers know, my husband and I are responsible for "Bil", a man in his late 50's who has autism.  Up to now, Bil has followed the courses that society has set out for a man with a developmental disability.  For many years, Bil worked in a sheltered workshop in the county where he grew up in downstate New York.

But, when my mother in law, who is in her late 80's, needed to be closer to family, Bil ended up living several miles from us in a small city in upstate New York.

Now, it is time to seek new directions for him in this new year.

Right now, the driving force in my life is an attempt to find some balance between working full time (as I approach retirement age, I have no interest in retiring), blogging, and helping my husband with the need to help increasingly with both Bil and his mother.  I can not be totally swallowed up by this, and I can't let my husband be swallowed up, either.  I am determined to do what is necessary but remain my own person.  It won't, obviously, be easy.

With sheltered workshops being phased out, Bil hasn't worked since mid 2015, and it now appears that he never may work again.  But, at the same time, new opportunities may be opening for him.  He has been participating in a day program two or three days a week, where he engages in various physical and mental activities.  You can see him starting to question things.  In the last Presidential election, in fact, he voted the opposite of his mother (something she wasn't happy about, I could add.)

So these are my three things I will do differently this year.
1.  For myself, I will educate myself more in how we can find help for Bil in finding increased independence for himself.

2.  I will take better care of myself.  I allowed myself to gain 10 pounds, and am on the verge of becoming overweight once more.  For the sake of my health, this must be reversed.

3.  I am going to reevaluate what I want from this blog.  Do I want to try to use it to blog a book?  I only have limited readership, so increasing the readership may have to become a goal.  I may find myself joining the Blogging from A to Z Challenge - more on that in the coming

Starting today I will join with Corinne at Everyday Gyaan in writing my heart out.  I won't do the entire Challenge but will participate in the weekly feature if I can. There is a lot more to the Write Your Heart Out event and I invite you to go to Corinne's blog to get the full details:

Write Your Heart Out #wyho is weekly feature that appears every Thursday with a linky that will be open from Thursday to Sunday.

1. Write a new post in which you free write.
2. You’re also welcome to write on the prompts offered in current post and/or add links from your posts from the week.
3. Visit and comment on at least two posts before yours.
4. Use the hashtag #WYHO to share posts and you’re welcome to grab the badge too.

Linking with #WYHO and #FridayReflections.

Autism and Employment

Today will be a short post as we cope, long distance, with Bil and my mother in law needing to be evacuated out of their home (without power since Saturday afternoon) to a relative's home about an hour and a half from her.  Fortunately, the roads were in good enough condition to permit this.

Bil only works part time, in a sheltered workshop, so getting time off from work for this latest evacuation (they also had to be moved, up here, due to Hurricane Irene in August) isn't a problem.

So it was interesting when I found this article regarding adults with autism and employment.

Bil is working in a sheltered workshop, part time - he is one of the "lucky ones".

How sad.

Justice Finally for Mark Lindquist?

It is the sad but sorry truth that people who work with the developmentally disabled, in so many cases, make barely above the minimum wage.  This is one reason why we can not get anyone to work with Bil and haven't been able to despite years of searching.  But people do go into that line of work.  And sometimes things don't work out too well for them.

And then, when an aide tried to save the lives (in vain) of three men with Down Syndrome as the Joplin tornado of earlier this year bore down on them, and suffered severe injuries to the tune of over $2.5 million dollars - his employer's work comp insurance company denied the claim because he hadn't put himself into any more danger than anyone else in the tornado's path!  Even more outrageous, Missouri law allows this.

Thanks to the power of the press, the insurance company has now reversed itself.

The aide was seriously considering selling his house to pay his medical bills.

I do wonder, though, how many other work comp claims have been denied, leaving people who work for the well being of our society's most helpless - bankrupted by work related medical bills.

Thank you, Press, for bringing this outrage to national light.

The Blindness of Blindness

Instead of autism, I want to blog today about blindness.  No, not the visual disability, but the attitude of people towards those with disabilities.  (Throughout this post, I will use the term "blind" as that is the term I grew up with.)

There has always been a fear in the back of my mind that one day I would go blind.  I don't know at what point it started, but as long as I remember, I did not have good vision without glasses.  It wasn't noticed until I was 4 years old, when a friend of my mothers noticed that I would watch TV with my nose practically up against the glass.  Fortunately, my extreme nearsidedness was easily corrected with glasses.  But each year (this was back in the 1950's) my parents would get a mailing each summer, while school was out, offering services for the blind to me.  This was back before IDEA so I suspect what the mailings concerned was me going to a school for the blind.  In those days, that is how the school system dealt with blindness-send the children away.

At least in New York they were trying to educate them, which wasn't true for all disabilities.

As I grew up in New York City, I'm pretty sure that I would have ended up in a school for the blind in NYC.  But for people in upstate, the choice may have been a school in Batavia, NY.

By the time I was 11 my uncorrected vision would have been enough to classify me as legally blind, and I wore glasses full time.  All I have to do, to experience blindness, is take my glasses off.  How lucky I am that a low tech solution was available to me.

As I've blogged before, things were very different for people with disabilities in that day.  Some people are so nostalgic for the 40's and 50's but there was a lot of ugliness right underneath the surface.  And the blind people of that era paid a horrible price for that prejudice.  But I did not really understand it until a few days ago.

Someone I know (not well, but I know a very good friend of his) suffers from a medical condition, which left him blind about three years ago despite a last ditch surgery up in Syracuse, NY.  He retired (he had enough service in and he was in his early 60's anyway) from his job and ended up working at a place in downtown Binghamton, which (this may be unfair) may be on the order of a sheltered workshop.

What I did not know, until a few days ago, is that this man actually was born blind, spent most of his childhood blind, and went to that school for the blind in Batavia.  At some point in his growing up, a series of surgeries gave him a degree of vision, and he was able to work in the "usual" workplace. He's never seen well enough to drive, but that never stopped him.  He's a lovely person.  He has friends.  He has a good life.

But now he was in that place for the blind, you know, the place where the blind people work.   And he was - horrified.

So many of the people there - how do I put this delicately, in a "correct" way - have problems.  No, I don't mean visual problems.  I mean mental problems.  They are "off". They aren't right.  I've seen some of them on the bus when I ride to work in the morning.

How could that be?  Blindness is about the eyes not working, about the brain not getting vision signals from the eyes or not being able to process them right.  It is not a "mental health" condition.  Or is it?

He talked to his boss.  He had to understand.  He was struggling to adjust.

His boss told him, "You were fortunate.  Your parents were able to raise you with the advantages.  You weren't abused.  They did whatever they could for you.  (the school in Batavia, at least now, is private, so who knows how much it cost.  In those days there was no federal law guaranteeing a free, appropriate, PUBLIC education in the least restrictive environment.) You were surrounded with love.  They sought out doctors for you.  They wanted you to succeed.

Most of your co workers didn't have that growing up, his manager continued. 

At best, they were neglected.  At worse, they were abused.  They became warped.  That's why they have mental problems.  That's what happens when children aren't loved.  That's what happens when children with disabilities aren't accepted, aren't treasured for their other talents, when people can not see past the blindness and think they are stupid-or worse. (I won't even use the "R" word.)

This is how visual impairment changes a person.  They aren't born like that.  It comes from the attitudes of their society, their family, from the people they interact with.  It isn't from their lack of vision.

My acquaintance understands.  He is trying his best to adjust and accept.  He "doesn't" have to work, but he wants to make some money on the side, and this is the path he has chosen to get that extra money.

What a waste.

And again, it makes me think of Bil, of his suffering when he was younger.  If he hadn't been in a family that loved him, who knows the path he may be walking now.

Working and Autism

I picked up this story about a blind musician with autism thanks to Twitter.

Besides the story of talent and autism, there was another statistic in this story.  I quote:

"According to Autism NOW: The National Autism Resource and Information Center, an estimated 24 percent of people with cognitive disabilities aged 16 to 64 work — and many of those workers keep part-time hours, Brusatori said."

Well....Bil has been working, for a sheltered workshop, over 25 years.  He only works part time.  The last I knew, he was making less than minimum wage.  And yet, his income gets counted in (for example) my mother in law's eligibility (or not) for HEAP.  It seems so unfair.

It doesn't surprise me that a minority of people with cognitive disabilities (I realize not everyone in this statistic has autism) work.  There just aren't many opportunites.

Unless you have a major talent like the man in that story, it is hard for anyone with autism to get any kind of meaningful work.

Bil will never be able to support himself, and it sometimes seems that the entire Medicaid system is geared to keeping people with disabilities in their place - poverty.

It could be worse though-as I blog about tomorrow.

Who Pays the Real Price for Autism?

Apparently, the mother does.

In this article by Binghamton area advocate Sally Colletti, quoting an article, the mother of a child with autism pays not only an emotional price in raising a child with autism, but a financial price.

In a place like Binghamton, here in upstate New York, that price may be the difference between keeping a family "head" above water in our tanking local economy-or not.

And then, who pays the price? 

This article, of course, is no surprise to any parent with a child with autism, no matter where in the country they live.

Bil's mother may not have paid this price directly.  Bil was not her first child, and she had already quit work at the point (I believe) when he was born. He was born back in the 1950's when mothers were expected to stay home. 

Of course, his father paid a price too.  I don't talk much about Bil's father because he's been deceased for a number of years-but he had to work more than one job through a lot of his work career to keep his family's "head" above water.  But Bil's mother was the one who bore most of the burden:  and, no matter how much times have changed - this still is the case.

The Perpetual Memory

Bil....the memory of our family.

Want to know the weather on a date during Bil's life?  Ask Bil.  Want to know the date that a holiday like Easter (a holiday moving around the calendar) in a certain year is?  Ask Bil. 

For him it's not a party trick.  It may well be a function of his brain, which can not work right in so many ways, being able to devote large amounts of memory to other things.

I leaned on this ability a lot when my father in law died, 13 years ago this next Christmas.  I helped my mother in law out by calling various agencies.  And whenever they wanted a date in my father in law's life, there was Bil all ready to give the answers.

Even in the last couple of weeks-I had to help my mother in law fill out paperwork for Social Security.  They wanted to know the date that Bil had last seen a doctor.  Bill had it down - to the hour.  And the visit before that.  And the visit before that.

I know Bil isn't alone in this ability among people with autism.  I just wish I could figure out a way for it to help him, or even to make him a better income than what his sheltered workshop job.

Social Networking at the Job and Autism?

I recently read a most chilling (to those involved in the World of the Spectrum) book called The 2020 Workplace:  How Innovative Companies Attract, Develop, and Keep Tomorrow's Employees Today by
Meister and Willyerd. 

The book is about getting talent in a changing world....one that is changing quickly, and maybe not for the better for those with Aspergers-just in time for all of those 1 in 166 birth generation Aspies to be entering the workplace.

So.... The prediction that social networking will be used extensively in the workplace, along with wikis, and blogs, may spell bad news for those on the spectrum.  Some companies (and not necessarily technology companies) are using these tools now.

On the one hand, younger people with autism do use the Internet.  Some have blogs, others have websites.  I know at least one person with Aspergers and one with PDD-NOS who are on Facebook.  This is on their terms. But what happens if these social "tools" become the norm and expectation for the world of work?

Unlike Bil, who has always worked in the sheltered workshop environment, others on the spectrum have been able to contribute in the "non-sheltered" world of work.  But contributing by joining Facebook like networks and interacting with others may not be a strength.  Then what?  Are they shut out of the World of 2020?

I can see the older people with autism, who may not have ever been able to learn to navigate present day online life, and have a lot of problem dealing with change, being shut out completely.  It's hard enough for some neurotypical people in their 50's or 60's to adopt to the change coming now.  I can't see Bil ever being able to do this.

Another way for "older" people to autism to be off the radar?

As Bil's advocate, I think about a lot of things.

The future....just some more food for thought.

Earning a Living

 Back in the 1970's, job opportunities were somewhat limited for someone with autism.  Unfortunately, they still are (in many cases).

After bil graduated from high school, he tried to go to college (right after high school, so that would have been in the late 70's-before any kind of supports were available for those on the spectrum) unsucessfully. Subsequently, he ended up at a sheltered workshop through the local ARC.  He is still working in the sheltered environment.

There is a appreciation award on the wall in my mother in law's house, thanking bil for his 25 years of service.  He got that award several years ago.

Over the years, his work experiences weren't always successful.  There was one job in particular he got fired from because of a supervisor who was (to put it mildly) less than willing to work with him.   But that was many years ago.

Right now he only works part time, 16 hours a week.  He works with blister packaging for medical needles.

I do not know what he makes now, but several years ago, it was below minimum wage.

How is someone supposed to live on that?  That would be worth its own series of posts.  I am no expert on this, just a family member, but it seems the "system" is designed to keep those with disabilities at a poverty level, trapped.  Just an observation.

He says the work is OK.   I know his Medicaid Service Coordinator has been looking into other opportunities for him on a higher level, and I know that in the past he has been somewhat resistant to any kind of change.

I will write more on this at a later time, although it may be a while.

I am not sure he is truly happy with his life, but it is so hard for him to communicate what is on his mind.