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.