Friday, November 17, 2017


Authenticity is the daily practice of letting go of who we think we are supposed to be, and embracing who we are. - Casandra Brené Brown

In 2010 Ms. Brown gave a talk at TEDx Houston.  Her profile says:

"Brené Brown studies human connection -- our ability to empathize, belong, love. In a poignant, funny talk, she shares a deep insight from her research, one that sent her on a personal quest to know herself as well as to understand humanity. A talk to share."

If there is one person in the world who is authentic, it is my brother in law Bil, who is developmentally disabled.  I'm not sure he has ever even thought about who he is supposed to be.  He just is who he is.  In some ways, knowing him is a way of understanding humanity.  He doesn't try to be fake.  He doesn't hide who he is.

Some may call it "being naive".  But, with Bil, what you see is what you get.

This isn't to say that Bil never engages in manipulative behavior.  He isn't a saint.  And, really, we do people with disabilities a disservice when we portray them as long-suffering people that are just a step away from sainthood. And, I would not be authentic myself if I didn't admit that I don't always like him.  He isn't an easy person to know.

But Bil doesn't pretend to be something he is not.  

So, it hurt Bil when he got some bad news this week.  He is no longer eligible for his day program.  And why is that?

Because he has made strides in it, enough that he is no longer impaired enough for them to justify him attending it. But it hurt the program director when she had to tell us.  If things change, she told us, we would take him back in a heartbeat.  We love Bil." And Bil liked the program.

So now, the hunt is on for a different program.

Bil will be Bil, and maybe he will end up thriving in his new program. So again, Bil, who dreads change, will have to face another change in his life.  The Unfamiliar.  But a change that, we hope, ends up being for the better.

Join Sanch Vee and other bloggers at #FridayReflections.  The prompt is at the top of my post.

Friday, November 10, 2017

Heart's Content #FridayReflections

I would love just to be able to laze around.

To read to my heart's content.

To blog to my heart's content.

To take photos of my world.
Yes, to my heart's content, instead of having to go to work when the world is glowing in golden hour light.

But duty calls.  Perhaps an issue that has to be dealt with regarding my developmentally disabled brother in law, Bil.

Yes, because he is not going to be able to stay in his day program very much longer.

I wonder if they've told him yet.

So the contentment of my heart must wait, still again.

Join Sanch Vee and other bloggers every Friday for #FridayReflections.  Today's prompt:  Heart's content.

Friday, November 3, 2017

The Neverending Journey

I spent some time over the weekend cleaning out the binder we store our information for Bil in.  It had been a long time since we had cleaned it out, and there was a lot of out of date paper we got rid of.

That binder holds a lot - nearly 15 years of advocacy, dating back to 2003.  Our work on behalf of my developmentally disabled brother in law, Bil, actually goes back longer than that.

15 years.

Phone calls.  Emails.  Brochures and handouts from meetings.


More evaluations.


More meetings.

Some of the documents from the journey my husband underwent to gain guardianship of Bil.

Much of it obsolete now.  Much of it thrown out.  Others, still valid after all these years.  It makes me weary, just to think of it.

All of that brought us to where we are now.  Still so much up in the air.

Perhaps it will be like that until we are all a distant memory, a blip in the history of the world.

The more things change, the more they remain the same.

Friday, October 27, 2017

The Monster Mash #FridayReflections

He was a graveyard smash.

He's always been attracted to horror.  He didn't know quite why, but there was something exciting about being scared when he was able to control the feeling.

There was so much he couldn't control.  There were the schoolyard bullies when he was young.  Then, when he was trying to find his way through a work world hard to understand, there was the boss that would yell and mock him.  There were the sounds that overwhelmed him.  There were the food textures that were unpleasant.  The tags in the clothing that irritated him.  The facial expressions that made no sense to him.  The unpredictable thunder in thunderstorms that petrified him.

He found so much in the world frightening.  When something became familiar, he clung to it with all his might.  Every change in his world was like an earthquake.

But, the horror stories.  And the horror books.  It was a way of him getting revenge on his tormentors, watching them scream and then be eaten by monsters.

The song "Monster Mash", in particular, made him imagine:  what if he was a famous singer?  No one would make fun of him.  He could do anything he wanted and he could be alone whenever he wanted. 

He would have his revenge at last.

Today's prompt on #FridayReflections:  Turn the radio on to your favorite station. Write a post using the song as your prompt.

Friday, October 20, 2017

Them, Too? What About Those with Disabilities?

My autistic brother in law, Bil, has never had a girlfriend.

He is definitely interested in women, especially blondes.  But I don't even know if he has ever tried to ask a woman out on a date.

On the other hand, would I ever have wondered if Bil was ever a victim of unwanted advances, on the other hand?

The recent #MeToo movement has made me wonder how many people outside of the disability community are aware of how often this vulnerable part of our population are subjected to this type of abuse. This is not to minimize what we of the non-disabled community have gone through (I am a woman in my 60's, so yes, I can come out and say MeToo, but that isn't the purpose of this blog post), but rather to bring up the following.

Here are some troubling statistics, courtesy of the national ARC: I quote, and hope the ARC is OK with that.  This word needs to go out.

"How often do adults and children experience sexual violence?
Studies consistently demonstrate that people with intellectual disability are sexually victimized more often than others who do not have a disability (Furey, 1994). Other studies suggest that 49 percent of people with intellectual disability will experience 10 or more sexually abusive incidents (Sobsey & Doe, 1991).
Any type of disability appears to contribute to higher risk of victimization but intellectual disability, communication disorders, and behavioral disorders appear to contribute to very high levels of risk, and having multiple disabilities (e.g., intellectual disability and behavior disorders) result in even higher risk levels (Sullivan & Knutson, 2000)....

Women are sexually assaulted more often when compared to men whether they have a disability or not, so men with disabilities are often overlooked. (emphasis is mine) Researchers have found that men with disabilities are twice as likely to become a victim of sexual violence compared to men without disabilities (The Roeher Institute, 1995). "

And this....
" How can sexual violence of people with intellectual disability be prevented?
The first step is recognizing the magnitude of the problem and facing the reality that people with intellectual disability are more likely to be assaulted sexually than those without disabilities. Also, societal attitudes must change to view victims with disabilities as having equal value as victims without disabilities, and giving them equal advocacy. Every sexual assault, regardless of who the victim is, must be taken seriously."

Yes, Bil is at risk, as is everyone else with an intellectual or communication disability, and Bil has both.

I wonder....does Bil have a #MeToo story to tell?

Friday, October 13, 2017

Friday Reflections for October 13 - Do You Dare?

Many community groups and nonprofits are waiting with bated breath for the outcome of the Scarecrow Decorating contest in our community.  Who will win?

I am a member of two nonprofits - here are their entries.

ACHIEVE formerly was called ARC, which, at one time, was called the Association of Retarded Children.  The name change shows just how far we have come. No one now, in our country, would ever name an organization using the "R" word.

STIC is the "Southern Tier Independence Center", a non profit for and by those who strive for independence.  Their major fundraiser is a haunted house escape room- do you dare enter the Escape Room?

I've never done escape rooms - have you?

Friday the 13th - a perfect day for a post related to Halloween.

Joining Sanch Vee and other bloggers for #FridayReflections.  Today's prompt:  bated breath.

Friday, October 6, 2017

Nostalgic - #FridayReflections

It was last September. My husband and I were sitting in his cousin's living room.

On his large screen TV, the cousin was playing DVDs of home movies his late father had taken.

On the screen, two teens and a pre-teen mock-fought in a childhood back yard.

Or, should I say, two teens mock fight, because the third boy (who may have been 10 or 11 at the time, come to think of it) wasn't really interacting with his brothers.

The movie was taken at a family picnic.  Almost all the adults in the movie are now deceased.

I had never seen the home movie before, and it took me a bit to recognize the three boys.  But my husband recognized them immediately.

The teens are a lot older now - two of them in their 60's, and one in his late 50's. They were my husband and his next younger brother. The youngest one, the one who really wasn't interacting, was Bil, my husband's autistic brother.

I enjoyed this tiny glimpse into their life, before I even knew them.  It was a time when things just seemed simpler.  We had no idea of what would come in the years since.

Nostalgia is longing for a simpler time. 

My husband's teen years, in many ways, were simple.  His parents were still there to make decisions, and the future was far away.

Sometimes, you just want to go back....

Join Sanch Vee and other bloggers for #FridayReflections