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.

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?

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.

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.

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.

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.

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?